Life comes at you fast!

Quick Update....Media Media Media

2009-10-08T09:32:00.004-04:00

Yesterday was the ribbon cutting ceremony at the Cancer Center for the NEW Learning Resource Center and new website ( http://www.cancerlrc.ca/ ).

Here is a link to the A Channel News story ( Click Here )

Here is a link to the CBC News Story ( Click Here ) - the story starts at 43:39 seconds - you can move the cursor to that point and play from there.

Here is the Picture and Article from the Windsor Star:

Cancer survivor Jeff Casey sold his Radioactive Man T-shirts to raise about $9,000 to help start a Learning Resource Centre at the the Windsor Regional Cancer Centre.
Photograph by: Sharon Hill, The Windsor Star

"WINDSOR, Ont. - A day after his daughter Isabella was born, Jeff Casey was diagnosed with follicular non-Hodgkin’s lymphoma.

The 34-year-old wanted as much information as he could find on his form of cancer. What’s a MUGA scan? How does it work? What’s going to happen to him?

“You only get so much time with your oncologist. Even though she spent two hours with me there, I still had 100,000 questions in my head,” an emotional Casey told a small crowd at Windsor Regional Cancer Centre Wednesday.

The centre officially opened its Learning Resource Centres Wednesday, two libraries within the cancer centre where patients can search for information by computer, borrow a book or take home pamphlets with more information.

When Casey heard the Do Good Divas and the centre were working on more resources for cancer patients, he sold T-shirts to raise about $9,000.

The idea for the resource centres started with the Do Good Divas who got pagers for patients so they could move about the cancer centre and still make their appointments. Their idea for an education kiosk grew into a library. The Do Good Divas donated more than $30,000.

The Windsor Regional Cancer Foundation funded a $14,000 video that gives patients a tour of the centre before they even step in the doors. About 2,000 new patients come to the cancer centre a year. New patients will get a letter telling them about a website at www.cancerlrc.ca that will have the virtual tour or they can request a DVD copy.

Carol Smith, a breast cancer survivor and Canadian Cancer Society volunteer, said knowing what to expect is calming for new patients. Smith said not all the information on the internet is reliable and even though patients get information at the beginning of their treatment, they may forget, have more questions or not be able to absorb all the details.

“Everyone’s overwhelmed,” she said. “You have a lot of questions and sometimes you’re so overwhelmed you don’t read it all.”

The cancer centre found patients wanted improved information and emotional support. Forty-three per cent of patients did not know about available support groups, the centre found.
Casey, an ergonomist, said it comforted him to know more. He was diagnosed Sept. 25, 2008, after finding a lump in his throat. He had his tonsils removed, went through chemotherapy and his cancer is now in remission.

The T-shirts he sold say Super (Radioactive Man) Casey in reference to his power to unwittingly shut down the tunnel border crossing.

During his treatment, he had been injected with radioactive dye. He didn’t realize it made him radioactive until he went to cross the border. One after another, all the tunnel gates went down. He said tunnel traffic was held up more than 40 minutes.

A cousin had the shirts made up and friends and family wore them on his treatment days to show support.

Last Post

2009-06-26T22:51:00.005-04:00

I suppose that not too many people will be reading this, my final, blog post. However, I am writing it to ensure that I get the pictures from the Cancerbration into my blog book (which I will make available to anyone that is interested).

'Cancerbration' was an excellent day - over 200 people showed up, including 70 kids. The food was great, the weather was great...but the bouncy castle stole the show. I didn't realize how much of a hit the castles are - I'm sure we will experience them again.

The cancerbration was meant as a means to celebrate my remission, my birthday, Isabella's baptism and really, to say thank-you to all of those who supported me through the cancer battle.

I am looking forward to getting to the 'New Lease on Life" stage...I'm almost out of the pool.

Ciao,

Jeff "Super Radioactive Man" Casey

Peter's Page

2009-04-30T22:53:00.002-04:00

I haven't written in a long time...and I likely will only write one or two more times - and it will only be to talk about our upcoming "Cancerbration" - Diletta, Isabella and I are having a huge picnic party on June 6th at Jackson Park here in Windsor. The party will go from 11am until about 4pm. We will be providing all the food and drink. Also, for all the kids (and a few of my friends) we will be having a bouncy castle, face painting and other fun things for the kids. Everyone, and I mean everyone, is welcome...we just want to know who is coming to ensure that we have enough food.

This party will celebrate my remission, but will also celebrate Isabella's Baptism and my Birthday (June 8th). So once again, everyone is welcome!

Canon Peter Walker is the rector at St. Peter's Church in Cobourg, Ontario - my home town. He we Diletta and I in Italy and is a person that I love and trust. I want to share with you what he recently wrote in the St. Peter's Parish Magazine for Easter. Quoted verbatim:

What my friend Jeff has shown me

I have a friend named Jeff. He is a handsome athletic young man in his early thirties, warm and outgoing. It was my privilege to officiate at his wedding two years ago. Jeff and his beautiful dark-haired wife made a particularly striking couple. They had the world at their feet and everything going for them.

I knew they were eager to be parents. Last year "they" became pregnant and in the fall gave birth to their first child, a daughter named Isabella. Though they live in another part of the country, I get baby pictures regularly sent to me through the internet. To watch the growth of their adorable child (blessed with her mother's dark hair), from newborn to half-year old, delights me.

I relate this story because just at the time Isabella was born, Jeff was diagnosed with a serious cancer. It gobsmacked him. It completely floored his family and friends. How could this trim, fit, healthy young man be so sick? Whatever happened? All the troubling Good Friday questions assailed us: "Why, what evil has he done?" The news sent everyone reeling, me included: "My God, my God, why have you forsaken him?"

I remembered Jesus' words: "Let not your hearts be troubled". But my heart was troubled! The awfulness of this sickness, the unfairness, troubled me deeply. In the French translation of the bible, the Greek word Jesus uses is rendered "bouleverse"; a much better translation I think than "troubled" because it means totally upended, our world turned literally upside down! That's what I felt, overturned.

What must Jeff have felt? I quickly learned.

From the date of his diagnosis Jeff started a blog. He let us follow the course of his treatment and know how he is feeling from day-by-day. It is, I think, his way of dealing with the disease - and helping others far away deal with his dilemma. His chronicle has captivated me. In the raw outpouring of his soul, he speaks to me.

It never occurred to me that Jeff had a particular gift for expression, but he does. He is a born writer, honest, clear, direct. I follow his regular blog entries religiously. They comprise the journey of a soul: a young troubled soul struggling to keep faith, to "hang on" in full process of treatment. I have wept with Jeff from afar and smiled at his baldness. He is truthful about the meaning of his wife's love, the woman who so recently vowed to stand with him "for better or worse," promising to cherish him "in sickness and in health;" he is also truthful about the meaning of his daughter, the infant who so inspires him to further courage.

Jeff's blog reveals a man of deep character. So with countless others I pray for this young man whose life was suddenly 'bouleverse', upended. I pray also for his wife and daughter, for his extended family, for his doctors and nurses, their healing arts, for his friends and caregivers. We all need help to deal with difficult reality!

Jeff's roller-coaster life careens from pathos to bathos, from setback to success. Hanging on for the emotional ride challenging. Yet, in faith, he has hung on. Today I heard 'good news'. In his blog Jeff writes that it was been 161 days from diagnosis to remission. Such joy! Dare I believe it? Dare I allow myself to believe that his hope, faith, and courage is rewarded? Dare I believe that he has returned to his home and family and is gaining fresh strength by the day? Dare I believe that a new day has dawned? These are Easter questions.

For those who dare to hope and believe, for those who keep faith, Easter comes. Not always in the precise way we want it perhaps, but Easter comes. Alleluia!

Peter Walker

Ciao,
Jeff

Just Pictures....

2009-04-14T23:02:00.008-04:00

The ribbon cutting ceremony at the cancer center. The room pictures right below is the main reception area - very nice little area with a fireplace and gran piano.

Diletta, Isabella and I standing in the resource room. We are standing in front of the painting that Dawn Banning donated - very nice!

Check out the progression...

Getting Better

2009-04-07T22:00:00.004-04:00

It has been a while since my last writing...and I miss it. But at the same time a part of me wants to stop writing as a way to walk away from cancer. I am a bit torn.

Anyways...things have been going okay. Mentally I am getting a lot better. I find that I am trying to be more positive and I am able to care more for Diletta and Isabella than I have in the past. That does not sound 'right' - but before I was very worried about myself - now that I am not as worried there seems to be more room in my heart and head to think about and care about what really matters...

Physically is a different story...last time I wrote I was taking some time off from physical exercise...I ended up taking a few more days than projected and then I got back into it last Thursday playing squash and I ran out of gas quite quickly. It was a playoff game and after 2 games I was done...he walked over me the next 3. I hate losing. Hate it. But I had nothing left.

After that I went to Chicago with my Wednesday night hockey buddies and we played 3 games, 2 on Saturday and 1 on Sunday - I was wiped and I am still wiped. Crazy.

My biggest problem is that I don't really have a middle ground for physical activity - go hard or go home. I guess I'll have to stick to lower impact sports and activities until I get my wind back.

Last Wednesday my Grandma threw a celebration party for all of her friends ... This was a party to celebrate the fact that I was in remission and also to meet Isabella. There were about 50 women...and me. Needless to say it was GREAT! Everyone loved Isabella!

Finally, today Diletta, Isabella and I went to the cancer center for the opening of the Patient Resource Rooms. There was lots of media and speeches and a cheque presentation from the 'Do Good Divas' who raised $30,000 for the rooms and new pager system being implemented.

The final amount we ended up giving to the cancer centre is about $8,700 - I am very proud of this and so should everyone who helped me do this. There were about 100 books in the book shelves and a ton more are on order. In addition, they are taking lists of books to the doctors and nurses to get opinions as to whether or not they should be purchased.

I'll post some pictures later and maybe some new videos...

Ciao

Your Basic Update...

2009-03-29T18:53:00.003-04:00

I think that right after absorbing the good news of being in remission I hit the gym/life a little too hard and fast. After about 2 weeks of being super active (squash, hockey, working out, house stuff, waking up at night) I was exhausted. But not my normal (pre-cancer) exhausted. I was getting a bit depressed and I was finding it difficult to get my energy back...so, I've taken the past 3 days off from hitting the gym and will take the next 4 days off too. This was pretty difficult considering that there was a big squash tournament this weekend - with some good friends and all the people from the league I play in playing. I love to play and compete and hated missing it. But, I am better off for missing it....

Anyways, we are doing great and slowly making the adjustments...

Isabella turned 6 months on March 24th and is now eating rice cereal, a bit of banana, rolling from front to back and back to front, she is able to pick up her soother and put it in her mouth...and is constantly saying, in a very soft little voice "mamamamamamamamamama".

Diletta is starting to get some more sleep now that I am getting up in the middle of the night to feed Isabella. However, Diletta, out of habit, is still getting up...This morning I got up at 5:30 to feed Isabella and then I put her back down to bed...she was still a bit alert and making typical little baby noises...Diletta heard this, got up, went downstairs and made a bottle and brought it back up ... only to realize that this had already just been done by me...

P.S. There is a delay in the blog being sent out...for some reason there is about a 2 day delay...I have researched it and can't find a solution...and there are no responses to my emails.

ciao,

Jeff

Stats....

2009-03-25T23:33:00.005-04:00

I thought I would put together a 'numbers' summary of all the drugs, drug costs, tests, time and blog/internet. If you know me well, you know I like to count - hahaha.Check it out:

Drugs:

Rituxan - 10,500Mg - and lots more coming!
Prednisone - 10 pills @ 50Mg each X 6 sessions = 3000Mg
Cyclophosphamide - 750Mg per dose for 6 doses = 4500Mg
Doxorubicin - 300Mg - this was given for 6 cycles at 50Mg each. The therapy limiting dose for this drug is around 500Mg - at which point the risk of congestive heart failure increases. This is one of the major reasons for only doing 6 cycles.
Vincristine - 10Mg - nasty drug. The first 4 cycles was 2Mg and the last 2 were 1mg each. The major difference I noticed was the tingly feeling in my fingers.
Cytosar - 500Mg given in 100mg doses - this drug is given via Lumbar Puncture
Mystery Drug - given via lumbar puncture once - I do know that the following drug was taken in addition to it...
Leucovorin - 5Mg - These were taken in pill form every 6 hours 4 times starting 24 hours after my 5th lumbar puncture to counteract the drug that was injected. Very odd eh?
Ativan - This is a fairly common drug for anxiety - but it is also good for nausea. I tried to take as few of these as I could. Dr. Hamm was reluctant even giving it to me because of its addictive nature...
Emend - excellent drug - I started taking this during my 2 cycle and I think it made a huge difference. Mainly for nausea. I took one in the morning on the day of my chemo and then one that night and the next night.
Stematil - as needed for nausea.
Zofran - taken the day of chemo and the next two nights for nausea.
Pariet - to protect my stomach from all the drugs.
Kytril - This was replaced by the Emend after the first week.
Benadryl - given during every chemo cycle to prevent reactions to the rituxan (and it really relaxed me and made me tired during chemo)
Gravol - I took a lot of this...to help with the nausea and to help me sleep. Generally speaking, I took it every day for 10-20 days post chemo. A few nights I took 2 - but that really knocked me out and I was very groggy in the morning.
Extra Strength Tylenol - I normally don't get headaches...but I got a lot of them during this.
Neupogen -1.6Mg X 30 shots - My second chemo cycle I took 1 shot daily for 10 days ... the 3rd - 6th I took 1 shot every other day for 10 days.

Drug Costs (all are estimates):

Estimated Costs of the over the counter drugs is $12,000. This does not include the Chemo Drugs Rituxan, Cyclo, Doxo or Vincristine...

Rituxan costs around $4,000 per dose, I have received 8 so far and will get 8 more = $64,000. I have read that the cost is between $3,000 and $8,000 per 'treatment'.
Vincristine is about $40/Mg - I had a total of 10Mg = $400.
Doxorubicin costs about $100 per 50Mg - for a total of $600.
Cyclophosphamide - 4,500Mg @ about $100 per 50Mg for a total cost of $9,000.

Total: $95,000

Tests:

3 - CT Scans
2 - X-Rays
1 - PET scan
2 - MUGA Scan
1 - Bone Marrow Aspiration
6 - Cerebral Spinal Fluid (lumbar puncture/intra-thecal)

Time:

161 Days - from diagnosis to the day I was told "Remission" - That might be a record?

Blog:

110 Blog Posts
43 Blog Followers
83 Blog Subscribers
23,684 Page Views
2,228 Number of Unique Visitors to the blog
34 Number of Countries Represented
425 Number of Cities (top 10 cities: 2951-Windsor; 1343 Toronto; 645 Cobourg; 294 Ottawa; 247 London; 244 Whitby; 194 Vancouver; 188 Kitchener; 156 Etobicoke; 140 Burlington)

Fundraising:

140 - Shirts Sold
$3,974.52 - Money raised from Shirt Sales
$4025.00 - Additional Money Donated
$8,074.52 - Total Money Donated to the Windsor Regional Cancer Centre for use in the new Patient Resource Rooms

Ciao

Thank You!!!

2009-03-22T19:32:00.009-04:00

Hi Everyone...All is pretty good in the Casey household these days! I have been getting back to the gym to workout with a personal trainer, playing squash 1-3 x's / week and I am still playing hockey 1x / week. I am a lot more tired post playing than I am used to - but I suppose that I will get closer to normal as time goes on. My energy levels are waaaay higher - and at times I feel they are greater than pre-cancer. But, more tired post playing...so I think I will have to monitor myself a bit more and take it a bit easier...(but I likely won't).

I have a few more shirts that I would like to sell - I have about 10 left over - so if you didn't order one you would really be helping out by donating a bit more money to the cancer center. Please just email me at caseylibero@yahoo.ca - Thanks!

I have hired a blog-book designer to help me put all of this into a book format that I can easily load up to blurb for publishing - as soon as I have got that done I will post on here for people to order. The reason I am offering this is that a few people have expressed interest in getting a copy...so if you are interested, I will let you know.

Diletta and I are starting to 'move on' with our lives by booking vacations and other plans for the future that we weren't able to 2 weeks ago. It feels great to make some plans, but some decisions have still been difficult because of an impossible-to-get-rid-of feeling that cancer is still around. This will decrease over time - and I can't wait.

--------

Now to the point of this post - Thank You.

Thank you to everyone that prayed, thought, e-mailed, called, commented, smiled, visited, cooked, baby-sat, joked, injected, prescribed, shipped, sent, hugged, donated, and bought for me and my family.

To my Family - Diletta, Isabella, Mom, Grandma, Kathy, Paul, Kahley, Erin, Kym, Brian, Graham, Kate, Marisa, Marco, Melissa, Val, John & Hallie!

To all the medical staff that helped me - Dr. Hamm, Dr. Ling, Dr. Warwarak, Pam, Debbie, Sheila, Donna, Maggie, Anna, Marg, Diane, The chemo nurses, the pharmacy, the booking staff, the blood clinic, Joanne, the registration staff and all the volunteers.

To Everyone that bought a shirt: Fed, Dante, Kristina, Caley, Stef, Don, James, Nick, Julie, Ruja, Tripun, Chuck, Gord, Ange, Abe, Mona, Andrew, Jeff, Cheryl, Graham, Gwen, Bob, Grandma, Marco, Melissa, Bello Metal Recycling, Rob, Steph, Chris, Chrystal, Adge, Susan, Frances, Brenda, Jeff, Laura, Marv, Joe, Moe, Ryan, Josh, Dana, Kelly, Justin, Miguel, Joel, Leo, Rosa, Fab, Dave, Blair, Albert, Lindsay, Melissa, Dave, Dora, Angelina, Anna, Tawny, Tony, Sherri, JP, Chris, Krissy, Dayna, Cathy, Mark, Lori, Shannon, Mike, Deidre, Sabrina, Bruna, David, Gratsiano, Denise, Phil, Justina, Jodie, Connor, Tim, Diletta, Mike, Phil, Syed, Alex, Scott, Nadia, Jamie K, Jamie M, Max, Greg, Ric, Doug, Jenny, Dave, Tanya, Diane, Mike, Steve, Scott, Chris, Gavin, Kristy Lee, Joanne, Mike, Sheri and Andrew.

To everyone that donated Money: Joanne, Jeff R, Brenda, Karen, Austin, Kathy & Paul, Dave, and Abe.

The TCS crew that did a combination of bought shirts and donated money: Kevin, Andrew, Peter, Sarah, Karim, Courtney, Scott, Heather, Tamara, Tom, Chris, Scott, Peter, Craig, Ryan, Steven, Graeme, Marc, Mike, Jamie, Sheila, Denise, Jeff, Mark, Austin and Danny.

All the people that joined Team Casey on Facebook - All 354 of you!

All 84 people that follow the Blog.

All 2,228 people that visited the Blog.

...and anyone else that I might have missed. If I was in contact with you ... I thank you!

Ciao!

Done Done Done!!!!!

2009-03-15T23:17:00.007-04:00

Wow.

I can not accurately describe how it feels. Tears come to my eyes often thinking about what I don't have to worry about - as odd as that sounds. You often hear the term "weight lifted off your shoulders" - doesn't do it justice. I have a new step, brighter eyes, bigger smiles, bigger fight...just an amazing feeling. I was able to go out Saturday and not worry...

I'm an Uncle! Or, more importantly, Val and John are parents! Beautiful baby Hallie Veljanovski was born Wednesday, March 11 at 9:30pm! She was 5lbs 15oz - sooooo tiny. So beautiful! An interesting coincidence...Isabella was born the day before I was diagnosed and Hallie was born the day before I was done with chemo.

So, last Thursday I went in for my last Lumbar Puncture and the 8th round of Rituxan as part of my 8 cycle chemo plan. The LP was booked for 9am and Dr. Hamm was called for an emergency and I didn't get the LP until about 11:30am - kind sucked, but at least I got it done...and I almost didn't. It started with the usual injection of freezing and then she inserted the needle (which I found out is a 20 gauge 3.5 inch needle - WOW) to start collecting some fluid (she collects every time to test the fluid) but she wasn't getting much - a little dry (I think she was joking??)...So she pulled out. She said that she will try again in a different location and that if she wasn't able to get any there, that she wouldn't do it - and that she was ok with that. After all, it is just prophylactic anyways. Didn't matter, the second one worked. But man it sucked getting 2 done.

Then on to the Rituxan...I normally get this drug over about 3-4 hours...We decided to push it and see if we could get it done in 90min - which is normal. We did it slower because of the reactions I had in the past. Anyways, they loaded me up with Tylenol and benadryl and then started the Rituxan...no problem. As soon as I was able to get up from the LP I went to the bathroom came back and Joanne was there to visit and try some therapeutic touch. Within 2min of getting back in bed I was asleep! Fantastic!

On my way out a few nurses got together and sang a bit of "Happy Last Chemo" hahaha ... and gave me a little bottle of champagne blow bubbles. It was cute.

My plan was to go visit little Hallie (and Val / John) in the hospital attached to the cancer center...walking out of the cancer center I was overcome with emotion and I cried a little and impulsively, I shot the cancer center the finger! hahahah (nobody saw this - but it made me laugh and still does). I wanted to collapse and cry - but I wouldn't let myself - it was harder than I thought.

I've got a few more posts to write specifically about this journey so I will continue on with the blog...

I couldn't pick a favorite....

Ciao

1 More to GO!

2009-03-09T23:12:00.003-04:00

I can't wait to be done with this shit.

I had a lumbar puncture today and Dr. Hamm used a new drug : mexa-idon'tcare-atose. I went in for my appointment at 8:30 to get blood work prior to my lumbar puncture and found out that I wasn't booked for a lumbar puncture. hmmmm....So, I went up to the doctor's office to see what went wrong and to see if I could get it done anyways...sure enough, my nurse Pam said that I was supposed to get the LP....blah blah blah, I went back down and got my blood work done and then made my way up to the chemo center. I didn't get my LP until 11am...out of there by 1pm. Also, Joanne (social worker) came by to visit and we had a good little chat about living with a history of cancer...Sounds good doesn't it - it is history, in the past, gone, see ya...bye bye.

I am really tired and have a slight weird headache. I slept for 1.5 hours post injection and then took a 1.5 hour nap around 5:30...and now I can't wait to go to bed. The only reason I am still up is to write this - I haven't been able to for the past 3 hours because Isabella was sleeping in my arms.

I have a lumbar puncture and a Rituxan on Thursday - my last treatment until June 4th. Wooooooooooo Whoooooooooooooo

P.S. I think that is the first time I have sworn in my blog - but it is called for.

We had some good weather on the weekend and Diletta and I took Isabella for a walk...she had a bit of problems with the wind and sun...but she loved it!

Ciao

REMISSION

2009-03-05T13:32:00.002-05:00

This is very overwhelming at the moment and very difficult to put into words. We are very excited, scared, happy, worried....but overall, very happy. It is difficult to just turn off all the worry and anxiety - but I know that eventually it will go away.

So, celebrate with me tonight in whatever way you can!

P.S. There will be a party to celebrate - I'll let you know!

Ciao

Jeff

.............Still waiting............

2009-03-03T23:21:00.009-05:00

Sooooo Cute!

I don't feel too anxious, but I have to admit that the number of times that the PET scan results crept into my head dramatically increased today.

On Monday they cancelled my LP because of this stupid cold. I have been so cautious over the past 5 months - likely overly cautious (if that is possible) - but I slipped a little at my cousin's family get together 2 weeks ago and caught a cold. I hate that this has been delayed at all - essentially it adds a week to the treatment. I am better today, but have had a sinus headache all day - just annoying.

My next LP is on Thursday, the following Monday and then I am not sure when my last one will be...hopefully she will do it next Thursday when I have my 8th round of chemo (lite) - Then I can be done and won't have to go back until June.

I wanted to give all my doctors something special from my family to say thank you. How do you do that? Essentially, I placed my life and family in their hands and they have done a phenomenal job. Words cannot do it justice. If I could say anything, it would be that each doctor, Dr. Warwaruk, Dr. Ling and Dr. Hamm all made me feel safe. I knew when I met each of them that there was something special about them and that I was is the right place to get the right things done. I can't type enough here to get the entire point across...I hope if any of you have a medical issue that your doctors are 1/2 as good as the ones I have had. In addition to my medical doctors, my Social Worker (Joanne) has had a huge impact on my mental well being, which is the biggest part of the battle.

OK - with that said, my hobby is photography and I have a few photographs that I have taken that I really love. The following picture was taken in 2006 at the Serengeti National Park in Tanzania. I call it "Family of Elephants" - I had 20" x 30" standouts made of the picture and have so far given one to Dr. Hamm and Joanne (the Social Worker). I plan on finding Dr. Warwaruk and Dr. Ling in the near future.

'Family of Elephants' seems too simple, but the point is that the doctors helped keep my family together - and this picture symbolizes that...

Now for some more pics...

Our extended family decided to wear their Casey Kicks Ass shirts to the Super Bowl!

My mom and Isabella - quite the hat!

Not too sure how I feel about Isabella wearing a Juicy bathing suit....

Trying to eat/suck her toes...just like mom!

A little out of focus...but look at those eyes!

Keep your fingers crossed today!!!

Ciao!

Cancer Table = GONE

2009-03-01T18:46:00.006-05:00

I only have 2 weeks of treatment left and some big news coming mid-week.

Monday morning at 9am I have a Lumbar Puncture and a meeting with the social worker during the rest period post-LP. I was very surprised at how wiped out I was after the last LP so I plan on taking it easy for the day - maybe 2 - also because I have another LP on Wednesday.

Also, I took the cancer table apart and threw the empty bottles away, put the papers/binders away, got rid of the calendar, etc...felt good. Diletta wanted to burn it all! hahaha.

A friend just sent me a cool Lance Armstrong Commercial - check it out at the link below - I am starting to see Livestrong everywhere:

http://www.youtube.com/watch?v=HjcZNR6MiRE

Some pictures from Belleville and some friends in Sudbury skating in Ottawa on the Rideau Canal.

Have a good week and keep your fingers crossed,

Ciao

...and now we wait...

2009-02-26T22:24:00.002-05:00

I stayed at my cousin Kahley's house last night and her fiance Jay came with me this morning. We got there early, 7:15am, and I was injected at 7:30 with the sugar solution...waited an hour and got in at 8:30 for the scan. So I lay down on the 12" wide hard plastic concave 'bed' and I get strapped in - one from beneath the bed around the wrists/thighs and one around the biceps/chest, a pillow under the knees and one under the head. One good thing was that they had warm blankets - this helped. They take several pictures from my pelvis up to just below my ears. The pictures were to take 1.5 hours - 60min for the first set and 30min for the second set. The first group of pictures each take 8mins....so I guess the second set should have taken about 4min each. The donut thingy slides up and down you body...for claustrophobic people, I think this would suck. Anyways, the tech, Sandra, made some miscalculations and the scan ended up taking 2hr and 15min. Laying perfectly still for this time sucks - but I just kept telling myself that the results of this test was going to be some of the greatest news of my life - so don't screw it up by moving.

They said I should get my results mid-week next week....not bad, but we'll see.

So, again, do whatever positive thinking/praying/acting you can ... and have a good weekend.

P.S. Thanks for all the encouraging emails and comments!

Ciao.

Cancer be gone....

2009-02-24T23:23:00.005-05:00

The lumbar puncture went OK on Monday...mind you, she was 2.5 hours late, so I didn't get the injection until around 11am, which means that I didn't get out of there until about 1:30 in the afternoon. This sucked because of the build up of anxiety and side effects caused by the smells alone...seems odd, but the less time there the better.

Hammy also cancelled my LP for Wednesday so that I could safely drive to Hamilton for my PET scan. The major thing to avoid after the LP is a lot of movement - like running or similar physical activity. She was concerned that the driving could be to rough and maybe too long (if weather was bad).

I did pretty good in the afternoon but was very tired last night. Today I felt like I was hit by a train. soooooo tired. I slept for 10 hours, took my grandma to the train station and then came back home and went to bed. I didn't really get out of bed until 7 tonight...man I was wiped. I think I should have taken it a bit easier Monday...not that I did anything significant, but at one point my body was telling me to relax and I didn't...I should have taken a nap. Today, I paid for it.

Wednesday, I am off to Hamilton for my PET scan Thursday morning...cross your fingers, pray, wear THE shirt, do all your superstitious rituals, whatever it takes....Cancer be gone!

Big Week!

2009-02-22T20:18:00.003-05:00

I ended up going to the "Care for Todd's Kids" fundraiser on Friday night with Diletta, my mom and Grandma. It appeared to be a huge success - there must have been over 1200 people. They had to open a second and third room to fit all the people. I would guess that they raised at least $40,000.

It was great to meet all of Todd and Amy's family and they were very happy to meet me. I was known as the 'pay it forward guy'... As you may know, I experienced my first chemo session beside Todd and Amy and was dramatically affected. The love that they were showing for one another and their interaction with the nurses, doctors and other patients provided me with the perfect role models. I wanted myself and my family to be like them. I couldn't remember their names (likely because it was such a dramatic moment for me), but they certainly stuck with me and I thought of Todd and his family often. Passing my experience on to his family must have struck a cord with them and they were able to see how Todd being Todd was inspirational to a virtual stranger. I am very glad that I was able to pass my experience on to them.

So...a big week...Monday morning I have a lumbar puncture...and then again on Wednesday and then my PET scan on Thursday. That is the big one!

I hope we all have a good week!

Ciao

100th Post

2009-02-19T21:26:00.003-05:00

Today sucked - man did it suck. I was extremely nauseated the entire day. I couldn't stand the smells and gagged a lot, way more than in the past. I was able to sleep a few times for short periods, but today was a busy day with lots of 'Chatty Kathys'. AND, I was in there for a long time...from 8:30 until 3pm. When I got home I went straight to bed...slept for an hour, woke up and had some cereal and water...then back to bed and slept until about 8:30 - very tired...I'll be going back to bed soon.

I think I plan on going to the charity dinner for Todd Pike tomorrow night...I'm kind of looking forward to it, but am also nervous to see Amy Pike again...I'm sure I'll cry.

I hope you all have a great weekend!

ciao

Chemolite

2009-02-18T22:23:00.006-05:00

Tomorrow is the first session of 'chemolite' - and I am nowhere near as anxious as I have been in the past. I think everything will go super smooth tomorrow!

Today I took some cookies to all of the people that I have dealt with at the cancer center. I had received cookies from the people at Bruce Power and the Power Workers Union in Toronto from a place called Zelcovia (www.zelcoviacookies.com) ... they are amazing. So I ordered 12 dozen for the cancer center...I took a dozen to the pharmacy, one to the secretary for the social workers, one to the receptionists at Dr. Hamm's office and 2 dozen to Dr. Hamm and her nurses and 4 dozen to the nurses in the chemo room. I have 2 more to drop off tomorrow that were not there today - the blood work clinic and the 2 front receptionists. This seems like nothing as all the people in the center have done soooo much for me ... just by doing their 'jobs'. One thing that seems evident is that they don't just do their jobs. I don't know how to put it...you know when you come across people that do their work with such ease, professionalism, sincerity, happiness (yes happiness), and so much more, without even trying....they are great. AND, I hope you never have to meet them.

I have also had some photographs that I took in Africa printed as standouts (www.mpix.com) to give to all the doctors that have helped me...I'll be dropping them off next week. One for Dr. Hamm, Dr. Ling, Dr Warwarak and one for Joanne the social worker. I'll post more on that later.

Also today I made a donation to the Pike Family (www.carefortoddskids.com) - as I mentioned in a previous post they are having a huge fundraiser for Todd's two boys education (they are 6 & 8 years old) Friday night here in Windsor. I would really like to go, but not sure if I should. I will talk to the nurses tomorrow and try to find out how careful I really have to be (germ-a-phob that I am) in large crowds.

Now for some pics!

Diane, Grandma, Laura, Mark, Chris and some dude?

Miguel in Mexico!

Yoga?

Ciao!

NED

2009-02-18T00:14:00.002-05:00

I got a call from the nurse this morning - no prescriptions for this 'chemo-lite' session. Fantastic! That means very minimal side effects...the only ones that I will likely get will be psycho-somatic (if that is the right term) - the ones that I will create. Last week I just thought about the lunch food and I got nauseated - horrible stuff.

The session on Thursday will only be the Rituxan drug...and will likely take about 4 hours to get it all into me, no big deal.

Starting next week I'll be getting spinal taps Monday and Wednesday for 2 weeks. Those are 2 weeks that I am NOT looking forward to. Even though I have done 2 of them, 4 more scares the crap out of me. There are worse things to go through, but these have been one of the scariest. ahhhkkkk - I'm psyching myself out...I'll be fine!

Also, next Thursday is the big PET scan...I am getting somewhat anxious about that. The scan itself will be easy, but a lot is riding on the results.

NED - No Evidence of Disease. I learned this one from Dana...and I think this is what I am hoping for.

NED, NED, NED!

I have got some thank you gifts for all the staff at the cancer center...I plan on dropping them off tomorrow during the day - when I get my blood work done. I don't think I am supposed to get my blood work done, but I want to just to make me feel better about the state I am in.

My next post will include more pictures...I bet a bunch of you visit ONLY looking for pics! I am very lucky...I get to see them both all the time!

Ciao

Sad Weekend

2009-02-15T21:59:00.003-05:00

I found out on the weekend that the man that was beside me during my first chemo session passed away. I am extremely saddened by this. His name was Todd Pike, 41 years old with a wife, Amy and 2 young boys, 6 and 8. Over the past 5 months I have thought of him often and was worried about him - I am not sure why - it is likely because that day was so significant for me that the memory of Todd and his wife was very strong ... and now I can't stop thinking about them. I didn't really even talk with him - just his wife, but they left a strong impression. I could tell that they were in a big fight and were fighting hard. I could tell how much they loved one another - they way they spoke to one another, looked at one another an how she sat by him when he was sleeping. When I saw his pre-cancer picture recently (on the website below) I didn't even recognize him - he had lost, I would guess, at least 100 pounds.

They are doing a fundraiser this upcoming Friday to raise money for his two boys education...

http://www.intensemedia.tv/charity.html

Cancer sucks.

The Cancer Table...

2009-02-11T23:19:00.002-05:00

I thought I would share a few pics of the 'cancer table' - I think that we will soon dismantle most of it. The black binder at the bottom is the mass encyclopedia of everything I have gone through - it has all of my medical reports, notes from appointments, receipts, etc...I think I'll bronze it and throw it in the river.

Below is the drug box - a majority of these are empty...I guess I'll let these go soon too. My stomach must be rotting - oh ya, I've been taking a drug for that - hahaha. Sooo many drugs. These don't even include my chemo drugs - these only control the symptoms from the chemo - that really just hit me...so many drugs just to control what happens from the chemo. WOW.

Now a few nicer pictures...

Aren't they Amazingly beautiful!

Symptoms ....

2009-02-10T22:17:00.005-05:00

It feels like I am pretty close to being done with symptoms!!!! I think that the Rituxan may cause some sort of reaction, but nothing close to the full CHOP R. As for the spinal taps, they will likely just cause headaches, but those can be kept at a minimum with limited physical activity.

I keep thinking about the PET scan and what the results will mean. Assuming that they are clear, I should be pretty happy. But I am sure that I will need some time to mentally recover/deal with having gone through all of this...and learning to accept that the future is somewhat uncertain.

I have read a few scientific studies lately (Thank Julie) and have been reassured that the chosen path of Dr. Hamm is the correct one, and that people in my situation (age, stage, grade) have had good results with CHOP-R and maintenance R.

I'll post more pictures of Isabella soon...I am sure that people are missing her!

Ciao.

PET Scan Booked!

2009-02-08T21:38:00.005-05:00

PET Scan booked for Thursday, February 26th - 7:30am - Hamilton.

I don't know how much weight I should be putting on the PET scan - but I think it is pretty important. I did a little research on PET scans ...

I will be injected (or swallow or inhale) with a radioactive material (essentially sugar) and then one hour later will go into the scanner for between 30 and 60min. I am guessing that I will have to lay with my hands over my head for the duration - if you don't normally do this it is a huge pain in the ass - HUGE - hurts like hell. The PET scan is best combined with a CT scan, which they have requested that I bring a CD of my last one, because the CT scan is best at determining size and location and the PET is best at locating overall cancer regions. PET scans are only good for specific types of cancer (Lymphoma is one) and can be used for diagnosis, during treatment or post-treatment to determine if the cancer is still active. Essentially, the 'sugar' will light up any cancerous areas - whereas the CT scan can only indicate where cancer cells 'might' be.

Ya...so....it is important.

Below is an example of 2 PET scans, before and after treatment for a Lymphoma patient (lets hope for the picture on the right!).

Today I receive a new picture...2 very good ol' friends...Phil and Bryan.

Ciao...

FYI - some more official technical information on PET scans:

Taken from the Ontario Health Technology Advisory Committee:

Positron Emission Tomography (PET) is a nuclear medicine diagnostic imaging exam. Nuclear medicine exams use small amounts of radioactive material (known as radiopharmaceuticals) that are usually injected into a person’s bloodstream but are sometimes swallowed by mouth or inhaled as a gas. The most common radiopharmaceutical used in PET scanning is 18FDG (Fluorodeoxyglucose). Health Canada regulates 18FDG as a new product and authorizes only licensed manufacturers to distribute it to PET scanning centres. The use of 18FDG is subject to a Clinical Trials Agreement unless the institution applies for a Notice of Compliance to manufacture the radiopharmaceutical for a specific indication and maintains an Establishment License. 18FDG is a form of sugar and is taken up avidly by many cancers because cancers use sugar for growth. However, metabolically active normal tissues like the brain, as well as benign conditions such as inflammation, also take up 18FDG. Imaging exams, such as plain radiography, ultrasound, computed axial tomography (CAT or CT) and magnetic resonance imaging (MRI) are routinely used to provide information on the shape and size of anatomical structures and this information is used for both diagnosis and treatment decision-making. However, PET scanning can provide information on both the location and the extent of metabolic activity of abnormal tissues such as cancer and it has the potential to identify areas of abnormal metabolic activity before there is distortion of the anatomy. The key question is does the information from PET make a difference in the clinical management of patients compared to these other tests?

A PET scanner works with a computer to create two- and three-dimensional images of the structureand function of organs and tissues. This technology is useful in determining the stage (extent) of somecancers, which in turn may help to define the most appropriate treatment for the stage of cancer.

Like any diagnostic test, PET must be used based on evidence because it can pose risks, as well as benefits. PET scanning can give false results if chemical balances within the body are not normal. As well, cancers that do not take up 18FDG may give a negative PET scan. If the PET scan upstages cancer accurately (i.e., the cancer is more serious than it was originally thought to be) patients can avoid aggressive treatments that will not help them. However, if the PET scan upstages the cancer incorrectly, patients with potentially curable cancers risk not getting the most appropriate treatment for their cancer or they may get aggressive treatments they do not need. Of particular concern is the recent report from the U.S. that 70% of patients who were scheduled to have a biopsy (the gold standard for diagnosing cancer is biopsy followed by pathological exam) before a PET scan ended up not having a biopsy and having treatment based on their PET scan results alone. The PET scan was three times more likely to lead to treatment than non-treatment, with physicians changing the management of 36.5% of their patients after the PET scan.

Same ol' Same ol'

2009-02-05T21:57:00.005-05:00

I hate nausea...

I am really looking forward to the day that I don't have nausea, and that I don't have to have it again. Mind you, one thing I neglected to talk to my doctor about before last chemo was the drugs that I would be on for the next session. I will only be getting Rituxan, but I am not sure what else I have to (or should be) taking. I have a feeling that it will only be the pariet (to protect my stomach), but I'm not sure. I don't think that the Rituxan will cause nausea - but I do know that walking into the cancer center does cause nausea.

Apparently my boss and his wife went to the Riviera Maya for a vacation...AND they took the shirts to take some pics...awesome!

As for the rest of you that have yet to send pics in....SEND THEM!

Ciao

Strength

2009-02-04T23:06:00.003-05:00

Today was the same ol' same ol' with symptoms...nausea and headaches. Through all of my past post-chemo nausea bouts I was able to eat through them, but this time I am finding it very difficult. I am getting cravings for crap (fast) food - so I ate A&W today...barf. BUT, I did get to eat Bruna's cooking tonight, which is always fantastic!

The only real eventful thing that happened today was that I went to see Joanne (Social Worker) today...On my drive to the cancer clinic, which is where her office is, I was thinking about what I would like to talk about. [She has a special talent as a social worker and is able to really listen what you have to say and provide some sort of insight or perspective that is truly thoughtful.] Anyways, on my drive, I wasn't really able to think of anything that was really bothering me - which is great. And as she confirmed, I really am doing well and have found my mechanisms to cope with this 'crisis'.

Crisis seems like such a harsh word to me, but I bet everyone out there reading this thinks that I am going through a crisis - but you know what, I bet most of you would find the courage/strength/ability to deal with it just as well as I have. It may be in a different way, but we do all have the strength inside...

Attitude is everything!

Ciao!

Yuck

2009-02-03T22:18:00.003-05:00

Today was filled with nausea and headaches...I keep reminding myself that this should be the last time I have to deal with this. I am a little weary of what the rituxan will do to me in terms of side effects and also the lumbar punctures. However, I think that that LP's should be fine...maybe some minor headaches and no physical activity for 2 days.

I was able to mail out most of the shirts today - so please feel free to send me pics ... as I get them I will post them.

Also, I was able to drop off my LTD forms at Dr. Hamm's office...I'm curious how this is going to work out. I've heard that they tend to deny first time around...maybe to deter, maybe because they need more info...we'll see.

I am very tired and still feeling like crap...so I'm gonna go to bed...

Ciao!

What a good day!

2009-02-02T22:46:00.005-05:00

I don't know where to begin....how about with some great news...I spent some time on the phone this morning with Nicole and Beth from the Cancer Foundation to see where things are at with the resource rooms and they had fantastic news! They have certainly been working hard and have things right on track! Apparently they have ordered printers, which was one of my main concerns in the beginning because they weren't going to. In addition, they are making the resource rooms Internet based, rather than intranet (means the patients and caregivers have access to all websites - not just the hospitals). These ladies are fantastic - such great news. In addition, they were able to do everything within their original budget...which left me wondering if they would need the money that I have raised so far...and YES they do! They don't have any money to fill the room with other resources, books, DVDs, videos, etc. So, they don't know exactly how much money they need right now, but I have decided that I want to raise a minimum of $7,500 for them. There are many medical books that I know are extremely expensive and I want to be sure that they get the everything they need. So, with the sales of my shirts, I have raised about $3,800, which left me about $3700 short (notice the past tense). Then this afternoon I spoke with an old dear friend from my year at TCS and he has donated 1/2 of what is needed to get to $7500 - so about $1800 - HOLY SHIT! (I have avoided swear words in the past - but what the heck). Thank you Austin! Thank you Thank you Thank you!

This puts the current total around $5600. I need to find a way to raise a bit more...If anyone has any ideas or would like to help out...please let me know!

I get a few emails a day from people with words of encouragement and I probably should have shared more of them...I keep them all and will often read them over a few times. Today, I got one from my cousin's future husband - Jay. He is a firefighter in Brantford and he sent me a picture from work...Awesome!

Also, this past Saturday I received a few pictures from the Medved's of their girls in their shirts...so cute!

As for my symptoms today - odd. I have an appetite but can't eat. I'll feel up for eating something and will start to eat it...then can't continue. I hope this passes cuz I am hungry. I exercised a bit today and got really light headed and a bit dizzy. Oh well, in light of everything else today, a great day!

I have more to write but will save it for the next few days...

Ciao.

Looooong Weekend

2009-02-01T23:49:00.005-05:00

Friday was one of the worst post-chemo days ever - it must have been a combination of the spinal tap chemo drugs and the CHOP R Drugs - whatever it was it kicked my ASS! I couldn't' eat all day and had trouble getting water down. Put it this way - I had a carrot and an apple for dinner.

Saturday wasn't much better - I spent most of the day in bed getting up for 30-60 minute stints. We were able to get out to the transition to betterness gala Saturday night - I was feeling like total crap until about an hour into the evening when I started to eat - seems that as soon as I was able to get a bit of food in me I was feeling much better. I was able to see some friends that I haven't seen much lately - and that was great.

Today was a bit better - I choked down breakfast and had some energy (likely from the prednisone) - I did crash around 1pm with a bunch of nausea and a headache. I couldn't eat anything until around 5pm when i gagged down a bit of food so that I could take my prednisone (which is likely why I am up so late). But I was able to eat during superbowl and didn't feel too bad - mind you, I shouldn't have eaten just pizza, nachos and guacamole.

I had mentioned in the past a friend of mine who has recently started her Battle with cancer. It turns out that she has her chemo days the same as mine - so we get to see each other during that time. She is a strong person. She has started a blog to share her story with family and friends - feel free to check it out http://sasha-icansir-vive.blogspot.com

Here is a picture of her and I from Thursday:

Ciao!

#6 - DONE!!!!!!

2009-01-29T20:31:00.004-05:00

Today was a loooong Freakin day. We got to the cancer center for 8:30 I was told that I could go right in to room #2 and that would be where I was going to stay for the day. I didn't like that idea - I think that the last place you want to be treated 'special' (for whatever reason) is the cancer center. I was also very nervous and anxious - I'm not sure if that is because it was my last major chemo or if it was the LP I was about to get....I was actually verklempt for a bit (not a big surprise for me).

Dr. Hamm got in around 9:40 and started on the LP right away... I'd like to say that it went well, but it didn't. A small procedural error was made on the first one and we had to do it twice...CRAP. The first one hurt quite a bit, but she aced the second one and was able to extract the fluid and inject the chemo drugs. She told me that I would likely get the results from the test today...good.

The rest of the chemo went pretty much as usual, but I was very very nauseated and tired from the drugs I took for the nausea.

I have to eat at lunch so that I can take the prednisone and hospital make me nauseated (like right now thinking about it - seriously) - so I ordered a chicken delight!

I was able to sleep in the afternoon a little but was still very nauseated. Tonight, I was feeling a lot better but now I am getting very very tired and I feel like crap. I am struggling getting this blog done....

But one last thing....back to the Cancer Survivor Park pictures...I kinda feel that I am in the last little square right now - almost outta there. I think that as soon as I can get the positive PET results I can dive out!

Lots more pictures below...ciao!

Good News....

2009-01-28T21:37:00.007-05:00

My CT scan and Gallium scans are both normal - no evidence of cancer - this is great news! We can't hang our hats on this, but it is still very good news. The really good news will come when I have the PET scan at the end of February...I should get a call within the next 2 weeks telling me when my PET appointment is, and it will be in Hamilton.

My schedule for the next 2 months....due to my symptoms of the past 3 weeks (headaches, nausea and chest pain) I'll be having a Lumbar Puncture tomorrow morning before my chemo (UUUUGGGGG - I HATE LP's). This will test my spinal fluid for evidence of cancer and at the same time I will get some chemo drugs. The chance that the cancer is in the spinal fluid is very very small, especially since it was negative the first time, but she wants to rule it out. Also, it means fewer LP's in the future.

My next 2 rounds of Rituxan will be in 3 weeks (Feb 19) and 6 weeks (Mar 12), then after that I will get Rituxan every 3 months for 2 years with the first one on June 4th.

Feb 23 & 26, Mar 2 and 5th I will be getting the Lumbar Punctures with chemo - and I have to get blood work done each day to make sure that my counts are good.

I also asked about my sperm to see if it would be OK to get pregnant again...and apparently it won't be until after I am done with the Rituxan. However, she is fairly confident that the drugs will not have long term effects...so I guess that is good.

My blood work is all good to go for tomorrow.

Finally, some pictures...a lot of pictures! Thanks to everyone who sent them - I very much appreciate it!!!!

2 Days....

2009-01-27T23:14:00.002-05:00

Today was better than yesterday in terms of symptoms...and I found myself thinking about what I was going to do when this is over...so many ideas! This got me to thinking about how positive it is that I was thinking this way - without even trying to.

I got quite a few questions for Dr. Hamm tomorrow; I have to find out about my blood counts (which I'll get done first thing in the morning), my CT results, Gallium results, I need to find out about my schedule (when I'll get the Rituxan and Spinal Taps), when the PET scan will happen, what other testing I will receive and I have to ask her about LTD.

So tomorrow's blog will be a bit longer with what I hope will be a lot of info and lots of pics....

If you have a shirt, take a picture(s) and send em to me...

Ciao

3 Days....

2009-01-26T22:04:00.002-05:00

3 Days until my last chemo...wow. I'd like to say that time has flown by, but it hasn't. Mind you, I can't imagine what it would have been like without Isabella.

Today I had nausea on and off and a headache all day - man that sucks.

I'm having mixed emotions about being done chemo. I want to make sure it has worked and I wonder if I (we) have done enough - enough drugs, enough nutrition, enough exercise, enough positive attitude? It bothers me that I'll never really know it is gone - only if it comes back will I truly know. That is such a weird feeling - and I'm still working on figuring out how to deal with it.

Unfortunately there was another mix up with the shirts...I have a majority of them, but there are still some missing...I'll drop off or mail the ones I have tomorrow. Sorry for the delay people!

If you have shirts...you owe me a picture by Wednesday!

Ciao.

Sunday Sunday Sunday Sunday

2009-01-25T22:34:00.003-05:00

I had a great break and spent some quality time with family!

Today, is kind of weird. I have a headache, nausea, my back hurts and I am very very tired. The tiredness is apparently typical around this time though - which seems odd. My blood counts are dropping, but it shouldn't make me tired...

During my 'week off' - I did expect to get a call from the doctor with results...but no message was left - so I guess there was anything significant. No news is good news? Ug. I guess I will find out at my next appointment with Dr. Hamm - Wednesday.

Tomorrow (Monday) I should be picking up a lot more of the shirts and will either be mailing or dropping them off over the next 2 days. If you ordered recently, it will still take a bit of time. So....If you have one, be sure to send me a pic of you in it so that I can post it on the blog - see if you can be a bit creative...

Ciao.

Week Off

2009-01-18T15:43:00.007-05:00

I had a particularly crappy day on Friday - for some reason I was feeling kind of depressed. Sometimes stuff just sneaks up on you and you can't control how your mind runs with it. I spent the day at home lying around with a headache and feeling nausea on and off. I take Ativan when I get nausea and try not to take more than 2 a day, Friday I took 3. Really, it wasn't that big of a deal and I was able to get through it better than past bouts.

Saturday was much different and I was feeling physically and mentally much better (...and I didn't take any Ativan).

Today, I have a lot of pain in my low back and some in my chest. It is only present in my bones and I can tell that it is from the Neupogen. It is a weird pain of pressure in the bones that causes pain, especially when I sneeze or cough - crazy. But this is a good thing because it means that it is working.

In light of this, I am taking a week off from my blog and Diletta, Isabella and I are going to visit some family. I'll leave you with a whack load of pictures from Saturday...might be a bit of overkill, but the pictures are super cute.

Ciao.

No Results...Blog Publishing....Book Idea

2009-01-15T21:47:00.003-05:00

The symptoms are all the same...tired, nausea, headache, fingers tingling and of course, the constipation.

I left a message 2 days ago at the cancer center asking for them to call me back with the results of my Gallium and CT scan's. Dr. Hamm had said that they would call me and tell me...I guess no news is good news? B.S. - I want to know. I'll call again tomorrow morning.

I've come across a way to publish my blog in hard copy and am quite excited about it. www.blurb.com . Seems like I could get an 8" X 10" hard cover, 200 pages for about $60 (softcover ~ $44). They even have a list of professionals that can help you with formatting, language etc. I figure that I will do this for myself at a minimum, but others have already expressed an interest in getting a copy, so I could have a 'cheaper' version done. The next question is at what point should I get it done? I suppose that I will just know...

The other thing that I have been thinking about lately is a book for cancer patients on how to deal with the treatment / chemotherapy / radiation / psychology / physical activity / etc. The format could be a top 10 list from 100 different patients of how they best dealt with it all. For example; how to swallow pills you don't like the taste of, what prevents nausea, how to get rid of constipation, and many other things, some of which you have read about during my experiences. I guess it could be a patients guide to dealing with cancer...

Ciao

Isabella's First Swim!

2009-01-13T23:28:00.005-05:00

Still no luck with the Prune Juice...and man that sucks.

Today was another bout of nausea combined with a few run ins with headaches and for some reason my finger tips are very tingly today.

Ok, so I finally figured out how to upload video from my video camera...easier than I had thought (the last video was from my point and shoot camera)....and YES, I need to work on my video skills!

Enjoy...

Ciao!

Lazy Monday....

2009-01-12T21:44:00.003-05:00

I had a very lazy Monday - but I guess that I have a good excuse!

After yesterdays positive blog - I hate to bring it down. But, after how good of a weekend I had my head and soul are doing great and really make days like today easier.

I was extremely tired today...spent most of the day on the couch. I started the day with a big dose of prune juice to help get rid of the constipation. DID NOT WORK. All I ended up with was a rumbling stomach all day... Ug.

Today I also got hit with nausea and minor headaches....The ativan did NOT seem to work for the nausea...hmmm....

But hold the presses....We took Isabella to her first swimming lesson! WOW - she did so well, no crying, not scared...it was great. I took video, but haven't made time to get it on here yet...maybe soon.

Also, I didn't quite realize how important it is for people to hear the better parts of my days, as was the case this past weekend. I thank everyone for all of their emails today - it helped me realize how right my aunt Kym was - people are living thru this with me and need to hear my good stuff too.

Ciao

Hockey Sunday!

2009-01-11T21:38:00.006-05:00

The symptoms have been well managed this time - the drugs seem to be working well. However, I think I wrote too soon about the constipation - seems to have crept up on me (I'll do the prune juice tomorrow morning). I am a bit concerned about how the symptoms may surface tomorrow...or over the next couple of days because I will be done with the Emend and Zofran. I am still taking the Pariet every day and the Neupogen shots every other day...

I had a good day today and was able to play some pond-style hockey. 3-on-3 (my team had 4 - to give me breaks) and the games were only 8 minutes. It wiped me out but I felt great! My lungs/chest/throat seem to be sore and congested, but that is likely just because of the rapid influx of oxygen today.

I am sure that I will sleep like a baby!

I would like to thank all of you who read this blog and send me messages. I have had tremendous support and I truly believe that it has helped my psyche and my soul. I believe that I will be a stronger person at the end of this. I have heard people say, long after they have gone through chemo, that it was the best thing that ever happened to them. I'll believe that when I get there....and I will!

Diletta brought Isabella by to watch Dad play hockey....she pretty much slept the entire time.

If you look close, you can see the steam coming off my head...the guys were all cracking up how much steam was coming off.

Me, Todd, Brad and Scott.

Ciao!

Nice Little Saturday!!!!!

2009-01-10T23:27:00.005-05:00

Not a bad day....but it was underlined with Nausea....I guess I am just waiting for my anti-nausea drugs to wear off. This will likely be Monday/Tuesday.

I have learned my lessons from past chemo sessions and I am not doing any coffee or chocolate - must be the acid - but it tends to set off my nausea. So...water water water. Boring ol' water.

One odd thing this time is that I haven't had any constipation - at least not yet. This is extremely exciting.

No real bad headaches yet either...but again, maybe after the anti-nausea drugs are over.

My energy levels were kind of high today too...well, high for me anyways.

I can't really beat yesterdays videos and pictures...but I was able to get some cute shots of Isabella today...Enjoy!

Ciao

Barfy Barfy Barfy

2009-01-09T21:38:00.007-05:00

Tired day full of nausea.

My nausea was horrible during chemo - but I think a lot of it has to do with my phyche. I associate being in that place with nausea...But, even now I feel really barfy. Even the hand sanitizer they have in there makes me nauseous. YUK.

So, I thought I would throw in some happiness - here is Isabella in her brand new jolly jumper..hilarious...she loves it. (it is a video so click the play button).

So...my mom is in Florida with my aunt and uncle, Kathy and Paul, and they decided to send some pictures with their shirts on....

Also, Dana sent me some pictures of herself at the doctors appointment in front of the hospital....

Then getting a needle stuck in her ass! She knows me .... skin to win!

Ciao!

5th DONE

2009-01-08T21:00:00.002-05:00

Got er done...but nausea was ever present...couldn't eat or drink anything all day. Tonight, I was able to force some food down, but it just makes me feel worse. I am very very tired (I slept for 3 hours right when I got home from the hospital) and I want to go to bed now. So that is what I am going to do.

I'll post some more details tomorrow and I have some pics and video to post..

5 of 6 - ya baby!

Ciao

Tomorrow is #5 of 6

2009-01-07T22:16:00.002-05:00

Ya....5 of 6....

Dr. Hamm informed us today that I would only be doing 6 CHOP-R's. There isn't any real reason why 6 instead of 8, but I guess that Dr. Hamm just decided that it would be 6. As I have stated in the past, the literature does not show that either one is better, and this was reaffirmed by Dr. Hamm. The one thing that she did say is that the Cyclo, at 450cc does dramatically increase risk of Heart Failure, and after 6 cycles I'll be at 300cc's...so, keeping away from 450 is a good thing (8 cycles would put me at 400).

I was a little shocked by this and I don't know how I feel about it...I'll get into that later. For now, I have the understanding that after my 6th session I will do 2 more sessions of Rituxan at 3 weeks apart. I also think that I will be doing the 5 spinal injections and 2 years of maintenance Rituxan. I'll have to confirm all this.

She did take a look at my CT scan and said that it looked clear. However, I did have some chest pain sunday and monday, so she will wait to see what the radiologist report says. She is slightly concerned about a blood clot, which are somewhat common for lymphoma patients...yuck.

I also got my MUGA results, and am slightly confused...to set the stage - anything above 50% is normal. So, my last MUGA result was 74% (I wanted 100% but I guess 74 is good). This test result was 59%, but used proper positioning...So, we can't compare the results. Either way, I guess I have to accept that both results are considered to be >50%.

My blood counts are good enough for Chemo tomorrow, and are actually more normal than all my past pre-chemo tests.

Dr. Hamm also informed us that London is now doing PET scans, so this is where I will get mine done.

I guess I should be happy that I am doing 6 instead of 8 chemo sessions...I just can't be happy about it. I think I would rather do the 8 to be sure that it gets the crap kicked out of it, not just slapped around. I'll have to trust hammy on this one...but I need a bit more time to get my head around it.

I hope you have your shirts on!

Ciao.

Even More Tired...

2009-01-06T21:50:00.003-05:00

I can't believe how tired I am today. Shoosh.

Around 2pm today I started to get a bit of nausea and anxiety. This was good timing as I was about to go meet with Joanne (social worker) at the cancer centre. The plan was to do some therapeutic touch - which we did.

So, I went in with nausea, the starting of a headache and very tired. At the end of the session the nausea and headache were gone. I was still very tired, but much more relaxed. During the session I was instructed to focus on breathing while she did her magic. At the end of the session she said that most of my energy was being blocked in my neck/head region and then she asked if I had a lower back injury, because she noted that there was some blockage there too...If you don't know, I have serious low back problems (bulging disc) - I was kind of impressed with this.

After that, we talked about some more issues relating to living long term with the knowledge that the cancer can come back at any time. She related this to the fact that people just learn to live with it and to not worry about it for now. She provided the example of cutting off your finger...right now, I couldn't imagine living without it...but, if it happens, you just deal with it. It won't be as simple, but it will just happen.

After the session I went home and slept for about 2.5hours...and now I am still extremely tired, so I'm off to bed. I have my Gallium scan in the morning and then I meet with Hammy! I hope she has some CT scan and MUGA results.

One final thing...As I was walking into the cancer clinic today I realized that I wouldn't have time tomorrow morning to get my blood work done before I met with Dr. Hamm...This is another problem with my bookings for this week. So again, I am not happy with the booking department. I believe that it is important for me to have my blood work done the day before my chemo to see exactly where my blood counts are...Anyways, I got my blood work done today and will find out from Dr. Hamm whether or not this is ok. She might just make the decision, about whether or not I can do my chemo, based on the past.

Ciao

Tired Monday

2009-01-05T22:59:00.003-05:00

Very tired...

The scans went well today. The radiology department was ram packed today, but I only had to wait about an hour to get in for my CT scan. It was standing room only in the main radiology lobby, but I think most of them were waiting for x-rays. The contrast dye wasn't so bad this time...I didn't get as warm all over as I did in the past (you might remember from a previous post that my butt got the most warm - and no I didn't like it). For the CT scan they put a needle shunt into the crease of my elbow just before the scan. They use this to put in the contrast dye.

Right after the CT scan a nurse came in looking for me to do the MUGA and get my Gallium injection. This was great - no waiting...When I got home Diletta told me that the hospital had called saying that I didn't show up for my appointment??? I don't know about the booking department at the cancer center...Something goes wrong every time...Anyways, the nurse that took me in for the MUGA and Gallium injection was great. Very nice and knowledgeable. I asked her about me testing positive for Uranium the first time I went through the border...she didn't know the answer but asked some colleagues and looked it up...not possible. Gallium 67 (what I am injected with) breaks down into Zinc 68. So their detector must have been wrong.

The other thing I asked about was whether or not I can/should handle Isabella now that I am radioactive...she suggested that I don't hang onto her for long. There are no official restrictions, but who knows, nothing wrong with being precautious.

All in all I was there for about 3 hours. What really sucks is that you can't eat or drink for 4 hours before the test...so I had a crazy head ache when done, likely from dehydration.

After that I went to meet with Beth and Nicole who are in charge of the resource room at the cancer center. I had written them a letter of recommendation for what I thought should be in the room and what patients need to have access to. In addition, I had sent them some drawings and quotes from Shannon. I wanted to get some feedback on all of it. They loved all of it and are looking forward to getting it done...their goal is to have it done by the end of February - A lot faster than I had thought.

Ciao

Big Week...

2009-01-04T22:04:00.003-05:00

Now that I have completed 4/8 chemo sessions it is time to do some testing...Tomorrow I have a CT scan of my head, neck and chest and a MUGA scan. I don't really like being injected with contrast dye for the CT scan because it causes my entire body to heat up - very weird feeling that creates a bit of panic. I will also drink the Gallium 67 tomorrow for my Gallium Scan on Wednesday. Also on Wednesday I have an appointment with Dr. Hamm. I don't know if she will have any results at that time, but she should have at least the CT scan. Either way, the results won't affect my treatment plan.

The results of the CT scan and Gallium will tell if I am in remission or not and the MUGA will report on how my heart is doing (because of the drugs). Dr. Hamm is very very confident that I am in remission right now.

In addition, I am meeting with the social worker again on Tuesday to try out the radiant touch...I'm still a little skeptical, but I have to keep my mind open to anything that can help...so I'll do my best!

Thursday is my 5th round of chemo and a friend will be joining me for her first chemo session.

Finally, I received an email confirming that Dr. Gascoyne has reviewed my slides and file. His opinion is that I am a Grade 3b. The grading is still unclear, and I don't think that the professionals agree, but I will ask Dr. Hamm for clarification. My understanding is that Grade 3a has more small cells and 3b has more large cells. Grade 3a, supposedly, will act more like Grade 1 or Grade 2 (slow growing harder to kill) and Grade 3b will act more like Diffuse Large B Cell (Fast growing easier to kill). I also think that Grade 3b has ALL large cells...but I am not sure...

Anyways, I'll get some feedback from Hammy Thursday.

Ciao

Happy New Year!

2009-01-01T09:48:00.012-05:00

Quite the freaking year!

I've taken a little more than a week off from writing on the blog and I feel kinda guilty...I know that there are quite a few people that read it and get updates on how me and my family are doing.

The last post I wrote was on the Dec 23rd and I had just received some of the shirts...I got a few more that day and was able to deliver some of them. However, not all shirts are in yet. There was a mix up in the ordering of the shirts and I won't get the rest of the order for about another week. Sorry about this, but there is nothing I can do about it and really, it isn't worth worrying about. I know you will all understand.

So...Isabella's first Christmas...and she got 2 of them. The first was on the 23rd at Diletta's sisters house as seen in the picture below:

We hid her until the tree for a little but...the little cutie!

....and she very much enjoyed opening gifts. She obviously didn't get it, but she did seem to enjoy the colours on the paper and the tearing open of the gifts. Below, she is opening her stocking.

As for me, the 23rd was a day I was worried about as it was the 5th day after my chemo. I had several bouts of nausea, but was able to get through the day no problem. It wasn't until later at night that I really felt the nausea...

The next morning the 3 of us caught the train to Toronto for our visit to Cobourg for Christmas day. My aunt Kym picked us up at the train station in Toronto around 2pm and it took us about 2.5 hours to get home from there. Normally, it takes about 1.5 at the most. I was feeling pretty crappy and as soon as we got to my mom's house I took a nap and slept for about 2 hours. This sucked because my grandma was hosting a dinner for the entire family. We showed up just as they were finishing dessert. No big deal...when we did show up, we ate the left overs, which were great!

The next morning was Christmas. We had a great time opening gifts and of course Isabella was super spoiled! A ton of clothes and a few toys. She even had on a cute little 'Santa's Little Helper' outfit...

She didn't last too long...and was soon fast asleep on Great Grandma's lap!

I had a few crazy bouts of nausea during the day and had to take a few breaks to take a nap or catch some fresh air. But overall, I was fine. For Christmas dinner our family went around the table to say our best moment of the year. This was really good and I was forced to really think about all the good things that happened throughout the year. I can't let the stupid cancer overshadow all of them...

While in Cobourg we were able to spend some time with a few friends and Isabella's God Parents...

Not exactly sure what they were thinking with the outfits...but I guess that is just how they roll...

We were able to get a pick of them in their 'normal' clothes (mind you I think the bright ones are their regular ones...).

We spent a few more days in Cobourg and ended up coming home on the 28th - our wedding anniversary.

On the 30th I met with the social worker again...and once again it was very beneficial. We talked about the 3 main things that we came up with as issues for me last time we met. They were sleep, guilt and anxiety.

The sleep has gotten better, but I think this is because my anxiety not as great. The anxiety is better because the guilt was addressed and because I can now exercise...which I have been. I've been using my bike trainer and the Nintendo Wii. I'll likely start getting back to hockey and squash - I'll just have to take it a bit easy and be sure not to get too close to any germs.

For New Years, Diletta and I stayed home for dinner and then went to her Sisters house around 11pm..

...and finally, I'll part with one final cute picture of Isabella!

I hope you all had a great night last night ... and as a good friend said:

2009 will be Fine!

Ciao

1/2 Shirt Day!

2008-12-23T01:33:00.002-05:00

I was able to pick up about half of the shirts today...and was able to deliver a few. Very exciting and they definitely are cool. I will deliver as many as I can tomorrow, which won't be many as we have the Bello Christmas tomorrow. Then, the following morning we are travelling to Cobourg for the Casey Christmas and won't be home until sometime around the 28th. I will do my best to deliver the rest then and if I have to mail your shirt(s) to you, you likely won't get it until the new year...sorry about this, but you should have it in time for my 5th chemo....holy crap...5th.

I had nausea pretty much all day but was out and about doing last minute mailing and shopping. It is difficult to have a conversation with someone when you are concentrating on not barfing! hahahaha....it really is funny. The other thing that is still bothering me is my fingers...they are getting a bit worse, which is odd because Dr. Hamm reduced the amount of Vincristine in the chemo cocktail...hmmmm.

I made an appointment with the Social Worker, Joanne, just before the new year and I also made one with Dr. Ling (the ENT that did the surgery) for mid January.

I likely won't write as regularly over the holidays because I will be busy. But I wish you all the best Christmas and Holiday Season!

I'd like to say that I want 2009 to be better than 2008 - but what is better than a baby girl?

....another?

ciao!

Some self reminding....

2008-12-21T23:50:00.003-05:00

Again - not a bad day.

I took all my drugs as prescribed and got Big John to give me my neupogen shot (thanks). I had to take ativan 2 times today for nausea...nausea sucks. My finger tips are still numb, I'm tired, minor headache...nothing too major.

I heard one of my best friends give a eulogy today that was very impressive. Such a strong character this guy has. He is one of the best. He demonstrated to me how to be strong in a difficult situation.

Now that Hammy has given me permission to be active I feel like a new person. I went to the gym today and hit the squash ball around for 20min and exhausted myself. I then went and walked on the treadmill for 12min - and was finished. Holy crap am I out of shape. On the squash court I worked on testing my mobility - slow lunges and making sure I had my hand eye co-ordination. I got dizzy a few times on the court and the treadmill. But all in all, I am glad I went. I really can't push myself with this. Too bad...but at least I can get out there.

I have been thinking a lot about my head and what the social worker talked to me about and the spiritual healer told me. They were both a bit overwhelming, but both have a lot to offer. I am going to follow through with both. However, I am going to be sure that I am in charge of what positions I put myself and will be sure to fully understand what I am about to put myself through, if anything.

I have read about some cancer patients going through hell and they will likely not survive. I hate reading that, and will stop it.

I have talked to patients who have nooooo clue what cancer they have, nor any info about the drugs they are on. That is not me.

I have read about people who are alone. That is definitely not me.

I have read caregivers posting questions that should be coming from the patients (and maybe some are) but that is not me.

I have read stupid stupid stupid questions from patients where it is evident that they do not have a good doctor. That is not me. Soooo not me.

I have heard from hundreds of people, over 200 people read my blog everyday, over 1,500 different people have been to my blog, over 16,000 hits on my blog, I have the best family in the world, the most beautiful wife and daughter in the world (yes I do), the best friends in the world, I am in charge of my cancer and I know what I am doing.

I have to remember this.

Man this thing is a roller coaster!!!!!

The shirts should come in tomorrow....I sure damn hope so!

2 days post chemo...

2008-12-20T22:30:00.003-05:00

Again - not a bad day!

A few bouts of nausea. One pretty bad this morning where I thought I was actually going to barf (I haven't done that since the first night). Then one bout again tonight around 9pm. I quickly took a Ativan and was fine.

I received a few emails confirming my thought from yesterday - I have to take and maintain control over how I deal with my diagnosis and treatment.

I'm very much looking forward to Christmas, but I just hope that everyone is healthy. Isabella has changed so much from when was last seen by a lot of my family..they are going to be soooo excited to see her look at them and smile. There are going to be many melted hearts! Awesome!

I got a very cool shirt from Dana in the mail yesterday that I forgot to write about yesterday....

This will be the shirt I wear when this is done...but when is it done? The doc said that I am likely in remission right now...but will continue to receive treatment. Also, that I will go on maintenance rituximab for 2 years....or should I wear it at the 5 year point when being clear for that long is a great sign....hmmmmm

Hope you all have a great weekend!

Jeff

6 days to Christmas!

2008-12-20T00:19:00.003-05:00

Today was great.

I woke up to my regular drug cocktail (emend, zofran, pariet, prednisone) then around noon I took another prednisone. At 4 i gave myself the neupogen shot, I figure I am better off getting 1 instead of Diletta's 5 pricks. Somewhere around 11 and 4 I took some Ativan to help calm the nausea. I took a nap around 2 - 4, then finally, I took a zofran at 9pm.

This is what the day comes down to...drugs drugs and more drugs.

I was able to go out with Diletta shopping for Isabella for xmas - that was kinda fun. But there aren't a lot of toys to buy for a 3 month old. Plus, she has everything. And I bet everything X 10 has been bought for her for xmas. It will be an exciting Christmas! And also, I went out for a few hours to a Christmas party. I was very careful not to shake anybodies hand and I must have washed my hands 50 times with Purell. The party was just a few guys playing cards and drinking beer in a garage...It is way better than it sounds...I of course wasn't able to have any beer, as it doesn't mix well with Ativan - so I'm told@!

Sometime this afternoon I spoke on the phone for about an hour with a person that is a type of spiritual healer. I was quite skeptical when I heard about this type of thing. But in speaking with her, she has a lot of insight to a persons sole and is also a cancer survivor - so she can relate in that sense. She did agree with me not wanting to become a patient (the discussion I posted 2 days ago). I still feel as though I have to keep a barrier between myself and the worst case scenario - I'll deal with my shit when I have to. In the meantime, I'm gonna kick the shit out of my cancer my way. Got it. She did get the sense that I tend to take on other peoples emotions and this may be why I feel the need to stay away from other cancer patients. I am already helping the cancer center with the resource room, president of the Lancer Volleyball Club and Chairman of The Clay Elliott Scholarship Foundation...Right now I need put myself first. Especially when it comes to cancer. This make sense? It does to me....

I hope everyone else is prepared for Christmas and doesn't have to weather the weather and the crazy crowds that tend to be out this time of year! Mind you, there seem to be a lot more sales on than in the past...

I am reallllly tired.

Ciao.

Post chemo #4

2008-12-18T23:33:00.006-05:00

Today went well.

I started at home by taking my Emend at around 8:10am. I got in a bit earlier than usual...about 8:50. They started me on my saline and gave me my pills (zofran, prednisone, tylenol, pariet, benadryl). Tally = 5 drugs pre chemo. Then they started me on a drop of saline and then into the rituxan (6th drug). I am on the same slower pace for infusion as they are still concerned about how I would react if they went full speed. If they did it at full speed it would take 90min and they way I go it takes about 3 hours. Somewhere around the 2nd hour I started to get nauseated, so they gave me a stamatil (7th), this wasn't really working but I forced down some food my mom had brought me and a bit of strawberry ice cream. The nausea wasn't going away and they couldn't give me another stematil so Terri (my nurse) went and got the head nurse to ... she came over to try and find out why I was experiencing this...Rituxan does not cause nausea...so she was a little perplexed. I told her that it was likely anxiety. I kind of think that I have created this crap in my head. nutz.

So they decided to give me an Ativan (8th)...from there I started to feel a bit better. Then I was able to take the Doxi, Cyto and Vincristine (9-10-11). I ended up getting out of there around 3pm. The other patients in the other two beds around me were great. But what continues to boggle my mind is how people would rather live in the dark about what they have and they put FULL trust in their doctors.

I got home around 4pm and went to bed at 5pm and slept til 8pm. I am now exhausted and ready to hit the sack.

picture...

My aunt and uncle Paul and Cathy!

Speaking of shirts...monday!

Ciao!

Chemo #4

2008-12-17T21:29:00.005-05:00

Today was a bit of a roller coaster...

I went to get my blood work around 10am this morning ... not bad, only a few people in front of me. After that I went to talk to a social worker (Joanne - who may actually be reading this). This is a difficult thing to summarize without writing a lot...so I'll do a really short version. Essentially, there are 3 things to work on...anxiety, sleep and guilt - all of which go together when you think about it. She gave me a few options which I will think about, many of which are provided by hospice, these included:

speaking with her on a continuous basis - I really like this idea.

a lifestyle changes class starting January that runs for 4 Wednesdays for 4 weeks - this is a class about transitioning from a person to a patient. Frankly - this scares me. Based on what Joanne said, she and another social worker act as facilitators to what becomes a patient driven discussion. What I am afraid of is hearing a bunch of people talk about how bad their situation is...i know that I have a good prognosis and I don't think I want to hear how bad other peoples are. Ug. However, maybe this is some reality I need to be exposed to. Surely they created this class for a reason (to fill a need???). What might be good about this is to hear other people having similar problems / concerns. Ack - I don't know.
Yoga - maybe.
Radiant touch - Apparently this is like reiki. She offered to come do this during my chemo - but I said no. I don't like being touched or massages so doing that does not appeal to me.

I also got a schedule of all the other things going on with hospice that I have yet to look at...

So I have some decision to make...If you have experience with any of this...let me know.

Diletta and I then met with Dr. Hamm, my Oncologist. She is pretty cool - a great doctor that really takes the time. I am lucky to have her. Anyways, we asked all the questions I wrote about yesterday and got the following info (btw - it's late and I have chemo tomorrow...so this will be brief - maybe...):

cure vs remission vs Overall survival vs etc...what's the deal? This is not straight forward. Basically I have a 60-80% chance of being in remission at the 5 year point. There is not scientific consensus as to whether or not getting to the 5 year point means cure. Some believe it does and others do not. Dr. Hamm noted that this is a very difficult cancer because it is so rare, which leads to very little research. If it does relapse, it will likely come back as the same cancer. She believes that I am likely in remission right now (it is not growing any more) and is confident that my CT scan in January will be all clear.

One of the problems with follicular, is that it is a mix of large and small cells. The large cells are fast growing/replicating and will react well (die) with the chemo. However, they don't know if the small cells are cancerous and if they are, they are likely a lower grade and slow growing. This means that the chemo may not work on them because it can take much longer for them to grow/reproduce. So, if it does come back, it can be in 5 or 20 years as a low grade cancer.

Clear as mud.

Regarding the types of testing that can be done post treatment II listed them before) some of them were already done and some might get done post treatment...we'll wait and see.

Blood Counts - all good. My counts are high enough for chemo Thursday, and are higher than in the past. This is great. Also, regarding my Red Blood Cells other ones that I don't remember, I am good to exercise and be active. This is great and I went to hockey tonight..man it wiped me out. soooo slow.

Side effects - I still have tingling finger tips...so Dr. Hamm said that we would reduce the Vincristine to 1mg from 2mg. This is part of the CHOP-R and she said that of all the drugs the vincristine is the least effect so she has not problem reducing it.

We asked about all of the anxiety I have been having and if an anti-anxiety drug would be good for me - namely, the Ativan. She basically said NO. She is hesitant to give such an addictive drug to a young person. She doesn't want to create an addict. I am very much ok with this - I think I can find other ways to reduce my anxiety. Exercise will be one for sure!!

I am sure that I am missing some details, but time to hit the sack and get ready for chemo.

As for the shirts...they won't be ready until Monday - too bad because I really wanted people to have them for Thursday. Oh well, there are 4 more chemo sessions.

Pictures are always great!

Born a Leaf fan - she doesn't have a choice (yet).

...and the best for last!

Ciao!

The day B4 #4

2008-12-16T22:19:00.005-05:00

I'm pretty lucky...I've got a great family who is always around supporting me.

So tomorrow I'll go for my blood work in the morning and I am going to try and talk to a social worker there. I have not been feeling my normal self and think that I need to do something. I think this will be considered proactive...I'm not too "not-normal" - I'm afraid to use other words - but talking to a professional should help. I hope. Anyways, then tomorrow afternoon Dil and I go to see Dr. Hamm. We have a few questions...

We want to fully understand the difference between cure/remission/survival. I'm pretty sure that there is not 'cure' for follicular, by my overall survival rate is fairly high (90% +++). But, the scary part is the chance for transformation (and what does 'it' transform to?)
We are going to ask about all types of post treatment testing...I'll likely get a PET scan, but what about 1) polymerace chain reaction 2) flow cytometry and 3) DNA microarray. I think all of these are very specific and accurate...but I have no idea (yet).
Get some feedback on my blood counts and the use of neupogen - can I take for longer to decrease my risk of getting sick?
Side effects - my fingers are still tingling, I had nausea up to day 10 and then on day 18 (yesterday)...
I'm going to ask about an anti-anxiety drug (that should be the ativan - but I stop taking it on day 10 - should I take longer?); and review the use of the current drugs that I am on.
I'll also get my scrips ordered for Thursday...

Half way through and I am sick of this. I hate it.

I hope the shirts come in tomorrow!

Ciao!

Almost at the 4th ...

2008-12-15T21:49:00.003-05:00

Just a few more days until my 4th chemo. I am surprised by how anxious I'm getting. I got nausiated a few times today and I don't think it can be anything but stress. This is not good. I am supposed to be relaxed and thinking positive. I am still confident in my outcome, but dreading the side effects of the drugs. From what I've read, the 4th can be the most difficult. I'm not sure if this is in terms of side effects or mentally. The last chemo round took the hardest toll on me mentally...and I'm getting sick of being 'stuck' indoors. yuck.

Anyways, the shirts should come in soon...I hope tomorrow or Wednesday. So, if you haven't mailed me money or dropped it off...can you please do so. I'll send them out as soon as I can after I get them.

ciao

Just a picture....

2008-12-14T23:34:00.003-05:00

If you click the picture it gets ALOT bigger...

Ciao.

Have a good weekend!

2008-12-12T00:35:00.003-05:00

Another uneventful day...I did get my Christmas shopping done though. I bet most of you haven't ... hehehe

I'm going to take the next few days off from the blog...I'll be back for Monday.

Have a good weekend!

Ciao.

Spinner Wednesday

2008-12-11T00:07:00.003-05:00

Thanks to everyone who sent some feedback about the resource center...If anyone else has some ideas, please send them to me.

Regarding the shirt sales...i received another 11 orders today...so we're up to 121! I can't wait to see them...

I picked up a bike trainer today so that I can get some exercise. That is one big thing that has been missing and man do I miss it. I don't plan on training per se, but at least getting my legs moving. I hope I use it.

P.S> One thing I always wonder is who actually reads this blog...If you do read it, send me a message. If you get it via email - I know you read it...but if you visit the actual blog, I have no idea...

That's all I got...

Ciao

T-Shirt Update...

2008-12-09T22:43:00.006-05:00

It is a lot more difficult to write when things are good...But this is a good thing.

T-Shirt Update - 111 shirts have been ordered! Holy Crap. This means that we have raised about $3000. Holy Crap. Thanks to all of you for this! I am going to be personally involved with the development of the Resource Rooms at the Cancer Center and they are definitely going to make a significant change - and all the people that have purchased a shirt have helped me help them. Thank you Thank you Thank you. I will continue to update everyone regarding these rooms.

By The Way - Never too late to order a shirt - but you won't get it until after Christmas.

I met with a few people from the Cancer Center and Shannon from Working Environments today regarding the Resource Rooms. It went very well and the rooms should work out great. I was most impressed with the amount of research that they have put into determining what the rooms should have. They did a tour at Princess Margaret Hospital in Toronto to see their resource rooms. PMH has a resource room for each disease site, which means that they have 23 resource rooms. WOW. 23. Some of the rooms have fire places and leather couches - sounds really nice. Windsor's won't be the same...but hopefully we can get them 'close'.

They are going to put in a computer, desk, chairs, phone, book shelves, pamphlet holder and a display board. Also part of the project is designing a website, which is actually the bulk of the cost - surprisingly very expensive. The overall budget is not very big so they are looking for any and all help. I told them about the T-shirts that I have been selling and that I would like to put the money towards these rooms.

Surprisingly, the one thing they are not putting in (for now) are printers. This boggles me. They have identified it as a need but are not able to. Apparently, there are problems with controlling what people print, keeping the paper stocked and IT issues. I see this as an absolute necessity. If you go to a good website to read about your specific cancer...there is not just a few pages...but dozens of pages. I think that they should be able to print and take the information home. They can't sit and read for hours and take notes...this seems ridiculous to me. They were happy to hear me say this as I am the first cancer patient to give them any feedback. One of the things that I have offered to do is write an opinion email regarding what I thought the perfect resource room would have.

If anyone has any ideas of how to help with the resource room, please let me know.

Now for some pictures...

Ciao

Finally - Cycle 3 DONE!

2008-12-08T22:57:00.004-05:00

Today was good.

I went and got my blood work this morning and did not hear anything from the Cancer Center - so I assume my blood counts are good. They should be fine considering the shots that I have been taking.

I didn't have any nausea today...I started to feel something come on, but it didn't develop like it normally does. So, I consider myself done with symptoms. Until next time.

I meet with the people at the cancer center tomorrow to see about the resource rooms, so I should have a pretty good update about that...

Also today we did some Christmas photos ... they aren't ready for posting though...but here's a small taste....

This is our house...I took this picture at night using a long exposure. Surprising how much light there is from across the street and the spot lights I have put up on our two front trees.

Our Christmas Tree...again, a long exposure to make the lights glow.

We ended up changing outfits to a more Christmasy one.

Ciao.

Sunday Sunday Sunday

2008-12-07T20:33:00.006-05:00

I sure hope that today is the last day of symptoms for this crap.

I had some nausea and headache symptoms on Thursday and then nothing Friday...so I thought that I was golden! The past two chemo sessions caused symptoms for 10 days ... and I was hoping that these new drugs were the answer. But no. I was hit with a bit of nausea Saturday and then kicked in the face with it today. CRAP!!! The nausea today was to the point that I was bent over the toilet gagging. Today better be the last day. I can't portray enough how frustrated I am. I think I would be fine if I was able to go out and be social while feeling crappy...I can handle that. But, I have to sit at home relaxing - soooo annoying. $%^&$##%%$

This session has been the most frustrating. The emotional ups and downs really took their toll on me and my family. Coming down off the steroids seems to have really kicked me in the ass. It made me feel grumpy, angry, sad, depressed - some for short periods of time or all day. So frustrating. Especially yesterday and today when I thought everything was finally OK.

OK enough complaining....

Last week also had a highlight...the pictures from the Cancer Survivor Park. Freaking amazing. If you missed it, go check it here ( CLICK THIS LINK ). I can't fully explain what these pictures mean to me (even though I have not been there) - but man it affected me. And you can see from the comments on that blog post that it affected others as well. There were confirmations and reminders that are extremely important. But I think that you have to experience cancer survivorship to fully understand all of it. I don't fully get it all...but I will be a bit more prepared for it. More specifically, the fact that for the rest of my life I may be doubting my body and worried that every cough or ailment is the cancer coming back...Ug. I have to prepare for this.

So tomorrow I'll go for my blood work. Dr. Hamm told me that I don't have to go as often as before...but I want to go to ensure that my counts are up and so that I can compare to last session (last session I took 10 neupogen shots and this session was only 5, one every other day - finished yesterday).

On Tuesday, I'm meeting with the people at the cancer center regarding the resource / computer rooms. I am excited for this and looking forward to helping them as much as I can.

Finally, here are some pictures from the past couple days...enjoy:

This has become her favorite toy ... even though she probably doesn't know what a toy is. But she is playing with the best she can. As far as I can see she has excellent hand eye coordination and will likely be an excellent hand baller, in her spare time.

We attempted to put her in her new snow suit (thanks Dante), but it might be a bit early...

I definitely missed this a lot this week. With chemo I can't hold onto her for 2 days and then with the cold, I tried to avoid holding on to her. We didn't want to start a vicious cycle of colds in the house...ug.

Wow...she won't have me wrapped around her finger for the rest of her life. OK...so she already does!

Cutie Patootie.

The first time she discovered this bear with wings (we can't figure out what it is...except that it looks like a bear with wings) she stared at it for at least 20min. It was hilarious.

She loves the Bumble Bear.

Thanks for Reading!

Ciao

Drug Rollercoaster Continues

2008-12-04T22:51:00.003-05:00

The shirt sale continues...

Please email me at: caseylibero@yahoo.ca if you would like one. You can check this post to see what you will get. For $40 I will mail you a shirt of your size.

I am pretty wiped today. Again, the lack of drugs, or combination of drugs, is messing with me. I had nausea on and off today combined with fairly minor cold symptoms.

Today, there was an article in the paper of a man that died of cancer. While I was getting chemo 4 weeks ago this man was beside me getting a blood transfusion. I remember how unhappy he was and he was pretty sure that he was going to die soon. I thought at the time that I didn't want to be exposed to that because I needed positive thoughts. I wish I had spoken with him more. I wish his family the best.

ciao.

Best Pictures Ever!

2008-12-03T19:40:00.014-05:00

Today sucked...But today will be the most important post to date.

I woke up with a head cold...not too severe, but considering the circumstances, I wasn't very happy about it. In addition, I had some nausea - those two don't mix well. I was able to take some Advil cold and sinus and some ativan. A few hours later I took a 2 hour nap and woke up with the nausea and head cold symptoms again. Diletta was able to get a hold of Pam (Dr. Hamm's Nurse at the cancer center) and she sent in a prescription for Azythromycin. Great, more drugs.

This all set off a weird feeling for me, which is likely a combination of drugs (or lack thereof), sickness and bad timing. Then to boot, my cousin Erin had been scheming to come up with a unique way to take a picture of herself wearing the "My Cousin Kicks Ass" shirt...and she finally sent me the pictures today. Amazing. Which leads me to the basis for this post.

Erin, Paul and Kathy took some pictures at the Cancer Survivors Park in Ottawa. What a great idea. I know that I will soon be a survivor, but this certainly hit an emotional cord for me.

This one looks like it could be me, Isabella and Diletta!

The 3 pictures above depict the sculpture "Cancer: There is hope" and shows 8 figures at different stages in dealing with cancer. At the beginning are people beginning to deal with it, in the middle is a woman in the midst of moving through the treatment maze and finally, a family of 3 who have survived. Man this hits home.

The next set of pictures cover two other sections of the park. The "positive mental attitude walk" and the "Road to Recovery".

The statements here mean A LOT - I cannot express to those reading that have not dealt with cancer how much these mean. I have heard them many times and DO realize that they are essential to mental and physical health.

I can't get my head around this one. When will that be? if ever? If I get told that I am in remission at the end of CHOP-R, I will still be going through maintenance Rituximab - so is it after that? Or, at the 5-year remission mark, which seems to be so important to so many people.

I am constantly working on this and it helps! I think the overall concept regarding cancer should be to leave the place better than how you found it. In terms of your own goals to accomplish, take your time and ensure that what you are doing will make you happy in the end. You don't have to put up with the bull shit.

I have done this very well. I don't think everyone agrees with it...but I have certainly put myself out there. As a result, I have a physician helping me in BC, a friend helping me find my slides, a contact at Rituximab, constant emails and messages providing support. Putting yourself out there is hard but rewarding.

...and a 3rd if you can. A doctor should not make you feel guilty about getting a second opinion. I did not run into this.

HHHHAAAAMMMMMMMYYYYYY (Dr. Hamm!)

This sounds like a no brainer - but you have to overcome some mental barriers to push yourself to keep seeking information, from the right place, to get the right answers. Then you have to question them. Sometimes twice. I've met people that don't even know what they have and they have been getting treatment for months.

Although these two can go hand in hand - but they should be separate. Having a positive attitude is paramount to everything. Treating your cancer promptly, properly and thoroughly is obviously important.

This speaks to having a positive attitude - you truly have to believe that you will survive.

I learn about new stuff all the time. People are working working working on finding causes and cures. It is important to stay on top of these things. Cancer can change at a moments notice and you have to be prepared to deal with it.

I did not know this.

Commitment, Knowledge, Treatments, Physical Welfare and Mental Welfare

We have to get the people the RIGHT information. There is a lot of bad info out there that can easily be mis-interpreted.

A lot to read - and all of it summarizes in a basic way what I have been dealing with in some form. I hope you are able to read this and take a more broad understanding of what dealing with Cancer entails.

This has been the most important thing I have written so far.

Thanks for reading!

Jeff

Tired Tuesday

2008-12-02T22:08:00.003-05:00

The cold symptoms kind of turned into a cold today...which sucks. Diletta called the cancer center to see what I can take, or what I should do, but they didn't call back. I did pretty much nothing all day and I am exhausted. I think this is a combination of the cold symptoms and the lack of prednisone in my system. As per Dr. Hamm, I am not going to get my blood work done tomorrow, but will get it done first thing Monday morning.

On another note, I am surprised that I have yet to hear back from the cancer center regarding the computer kiosks and/or chairs. AND, I have yet to hear from the Lymphoma Research Foundation. I have contacted both several times offering to help and donate. Odd.

As for my shirt sales...I sold 7 more today...so I only need to sell 6 more - 6 more!

If you don't know what I am talking about...please refer to yesterdays post by clicking here.

Ciao.

Jeff

Shirt Sale!

2008-12-02T00:00:00.004-05:00

Today was another good day! These drugs seem to be working great. However, I seem to be getting a bit of a cold. Not sure why...but hopefully it does not amount to anything serious. I also think that tomorrow will be an important day to see what effect the drugs really have on me as today was the last day for Prednisone (steroid). Tomorrow I only take the Pariet (which I will now take for the next few weeks to get a hold of my heart burn) and the Neupogen shots every other day for 5 days.

Now, back to the shirts...I would like to sell a few more before I go place an order. My goal is 20 and I have currently sold 6.

The Front will look like this:

...and then you can get whatever you want on the back...as long as it ends in: Kicks Ass!

You can message me directly at: caseylibero@yahoo.ca

Thanks Everyone!

Ciao,

Jeff

Happy Monday

2008-12-01T00:50:00.003-05:00

I got about 5 orders for shirts (Example Shirts are Below) and am throwing this message out there to see if anyone else is interested. The front will remain that same, but you can put whatever you want on the back. I was thinking of charging $40 for the shirts and using the money to put towards what I end doing with the cancer center in terms of chairs and computer kiosks. So, if you are interested, message me your size, what message you want on the back and where I can mail it.

So today was not as good as yesterday...but still not too bad. I got hit with nausea a few times and had to take it a lot easier than yesterday. But all in all, the post-chemo session is going great! The Adivan really seems to be working well combined with the rest of the drugs. I hope it lasts.

Isabella, Diletta and I put up the Christmas tree today, so you should be seeing some Christmas type photos coming soon!

Ciao

Nice Little Saturday!

2008-11-29T22:54:00.002-05:00

I love to say that there isn't a whole lot to report on...Today was great. I think we have found a great drug combination. I had a high level of energy today and was able to do some things around the house. I sure hope that when I go off the zofran I keep this energy. I am very tired now, but I was fairly active today.

Isabella is changing fairly dramatically these days...she is discovering her hands and feet and is starting to be able to handle things. I haven't been able to handle her for 2 days because of chemo so I am really looking forward to tomorrow.

Isabella haning onto a rattle and shaking it...seems like a small thing...but it isn't!

Perfect light....

Had to get another....

Very happy in Great Grandma's arms!

My cousin Graham trying to hide behind Isabella!

Ciao!

Post Chemo #3

2008-11-28T23:02:00.004-05:00

Today went well.

I really started to feel like crap last night around 7pm, but was able to take some Adivan and Gravol and get to sleep for about 11pm. I was awaken at 9am by Diletta with my morning cocktail of drugs! Pariet, Prednisone, Emend and Zofran. I then took an Adivan at 11 because I was starting to feel nauseated, than a Prednisone at lunch. I took a hard nap at 2 and woke up at 4 to get my neupogen shot (did it myself), another Adivan at 6 and finally, my zofran at 9pm.

All in all I feel pretty good, just tired.

Short and Sweet - Ciao!

Chemo #3

2008-11-27T17:51:00.005-05:00

Today went very well. I had not problems with any of the drugs, which is great...now for the detailed version:

I started this morning by taking the Emend (anti-nausea medication) at 8am. My grandma and I got to the hospital for about 8:20 and headed up to the waiting area outside the chemo room. We didn't get in until about 9:30 and started the drips at about 9:45. While the first saline drip was going I took my pills (Prednisone, tylenol, zofran and benadryl). At around 10 they started with the Rituximab.

With the Rituxan, the normal course of action is to take the first dose slow (like during my first chemo) to see how the reactions go. My firstchemo session, during the Rituxan, I got an itchy throat and hives. During the second chemo, I reacted just slightly, so they slowed it down. So I thought that for today the would speed it up and it would only take 90min - but they didn't, so this adds about 2hours to the treatment. This is fine by me as I would rather be cautious.

Around noon I took more tylenol and benadryl. So far today I have taken 9 drugs and will take 1 more tonight (either gravol or Ativan).

So i thought all was going well..until about 6:30 - now i feel like crap. headache, nausea and more. I'm off to take drugs and go to bed.

Awesome pics!

Ciao

Chemo #3 Tomorrow

2008-11-26T18:12:00.003-05:00

The appointment went well with Dr. Hamm...but it was a reminder of how shitty this is.

Diletta and I showed up at the cancer center around 9:45 and there were no parking spots. Diletta had to drive to the other side of the hospital (to the main entrance) to park.

When I first go into the cancer center I check in at the front desk where they hand me my appointment forms and a form to fill out what testing I have had done, if any, and to list what concerns I have for my doctor. I then go upstairs to Dr. Hamms office where I drop off my forms at her front desk. Then to the waiting area.

For today, after I checked in at the first front desk, I went to get my blood work done. There was only 1 person in line and it went quickly.

I was called in for my appointment around 11am and finally got to meet Pam, Dr. Hamm's regular nurse who has been off for some time. We talked for a bit to discuss my concerns and to see how I was doing. She spent about 20min with Diletta and I. She is great and was able to straighten out a few things and help me with getting some more reports.

Then Dr. Hamm came in...apparently she has found my blog. I had actually assumed that she had read it before. She didn't say too much, but did mention that Isabella is beautiful! I also told her that my family calls her 'Hammy' - hahahaha.

So, about the questions that I had for her:

8 treatments instead of 6 - She started answering by saying 'good question' - and then proceeded to tell me what the research says and handed me a summary of the research. To summarize, nobody has really studied whether 6 is better than 8 is better than 12. She feels that 8 is fine and may have considered doing 6 CHOP-R's and then 2 Rituximabs + the maintenance Rituximab, but we will wait and see what happens after the 6 treatments. As per an email from a fellow Follicular NHL'er - I asked about the effectiveness of Rituximab over time and whether or not it decreases - she told me that there is NO evidence of the effectiveness decreasing. If that were the case then continuing with the maintenance Rituximab would not be an option. So, we are sticking with 8 and I feel comfortable with this. However, to consider will be what I asked next;

CT scan of my head, neck and chest, Gallium and MUGA testing schedule - I will get all of these tests in early January. The CT scan and Gallium to see the activity of the cancer. This will tell a lot. We will be hoping for decreased activity. I asked what would happen if there was no activity - would that change the treatment plan - No it would not. We will proceed with the next 2 chemo sessions and then get the PET scan done and go from there.

Dr. Gascoyne at the BC Cancer Agency - she is going to set up the referral. No problem! Woooo Whoooo.

Blood Count results...as Judy had told me, my WBC went up to 53.3 (normal is 3.6 - 11.0)and my Neutrophils went up to 42.6 (normal is 2.0 - 7.5) and they are now at WBC = 3.0 and Neutrophils = 1.4. The key to remember here is that the neupogen shots did their job and likely protected me from getting sick during the down time and now my blood counts, although low, are good enough to get my chemo tomorrow.

Drugs - I am going to try Zofran instead of Kytril and Adovan instead of Stematil/Gravol.

So, after Dr. Hamm I went to check out and get my next appointments. Then to the pharmacy to pick up my drugs, and then to the pathology department to drop off my slides and arrange for them to be sent to BC Cancer Agency. They will send them via Canada Post for free, but you can pay to have them Purolated. Based on my previous experiences, I don't want to feel stressed at all so I paid to have them sent out West.

That pretty much sums everything up.

Tomorrow is Chemo #3 - so wear your shirts if you got em.

P.S. If you want a shirt, let me know and we can arrange something.

Ciao!

2 more days...

2008-11-25T22:59:00.003-05:00

It is nice to not have anything to write about, cancerly speaking. However, I find that I am starting to dread the 10 days following Chemo Day. I can't believe that I have 6 more sessions to go...Ug. Time is moving fast and slow...

I have an appointment with Dr. Hamm tomorrow morning at 10am. I plan to ask her about getting a referral for Dr. Gascoyne (pathologist at BC Cancer Agency), the reason for 8 cycles of CHOP R, the 10 shots of Neupogen for my blood counts (I don't need that many), check my blood counts, the 5 post chemo spinal taps...and anything else that I think of leading up to the appointment.

I also plan on picking up my prescriptions tomorrow morning (all 6 of them), maybe dropping off my slides (if I can get Dr. Hamm to refer me to Dr. Gascoyne), speaking to someone about the computer kiosks and the chairs.

Other than all of that, I have to mentally prepare for the next 2 weeks. I felt nauseated today and I think it just purely based on stress. Crazy.

My aunt Kym and Grandma are coming from Cobourg to help Diletta and I for a few days.

Ciao.

All is Great.

2008-11-23T21:42:00.004-05:00

I love the fact that I have nothing 'cancer-related' to report on. Just a good ol' weekend! So...of course...more pics!

Saturday Night Isabella and I watched the hockey game...Diletta took this picture before the game...

And this picture after the game...

Ciao.

Pictures...

2008-11-21T21:28:00.006-05:00

All is great with me so I thought I would share some pictures from the Ladies Night out and the Jim Cuddy Band Concert.

Just before the Ladies Night Out dinner - my family and I were able to meet with The Jim Cuddy Band!

The event took place at "Meet at 66 King" in Cobourg....here is a picture of the room prior to being filled with Ladies!

A few ladies enjoying their wine and gifts.

4 beautiful ladies...from left to right, my cousin Kahley, my wife Diletta, my mom and my aunt Kathy.

Me with 3 very beautiful and amazing ladies. From left to right, Lynn, Chris, me and Diane.

Me giving my speech to about 150 people. Apparently it was the best one I had ever done.

My cousin Kahley giving her speech to about 500 people...she said she was very nervous, but the way she spoke you couldn't tell. Again, she did amazing!

The Violinist - she really knew how to play that thing.

Jim Cuddy Belting out a tune.

This picture will give you an idea of how large the crowd was...This picture looks like it was taken when Kahley was speaking...and the two below when the band was a rockin.

Wow What A Night...

2008-11-19T23:11:00.002-05:00

Wow Wow Wow...

Tonight was the Ladies Night Out event and the Jim Cuddy Band Concert for our foundation - The Clay Elliott Scholarships Foundation. And holy crap it was amazing.

I am not really able to be around people I have to be very careful about getting sick. BUT, I went to the ladies night out and gave a small speech thanking the 120 beautiful ladies and to stress the importance of having the right attitude (I consider myself an expert now) and to ask them for money. I kind of snuck in and snuck out so that I wasn't 'exposed' to too many people. A huge thank you to Lynn and Diane who worked so hard to make this night happen. We had at least 30 volunteers help out too...thank you thank you thank you. My speech went very well and I had a lot of great comments after.

Then, I went over to the Park Playhouse Theater to see the concert. I hung out upstairs with the A/V and sound guys to watch it. There were 500 people there and it was freaking unbelievably fantastic. WOW. My cousin Kahley started off by giving a speech about the foundation, the importance of attitude - and she nailed it. I have never seen her speak so well. She was right on cue and impressed all 500 people. We also had a past scholarship winner speak about how the foundation helped her out (she won in 2005 and is now working in her field in the area). We had a slide show going highlighting the foundation and a looping video highlighting the past scholarship winners. We gave everyone in the crowd an Attitude pin and Kahley, in her speech, explained to each of them that they have to wear it on their right side so that they have the Right Attitude. I'll say it again, she nailed it! 500 people.

At the end of the concert, the entire crowd was up dancing. It was a perfect ending to a perfect night. I am guessing that we raised around $20,000 tonight...I'll report later on how well we did.

I feel great and what happened tonight was great for my soul.

Ciao.

I should have known better...

2008-11-19T00:10:00.002-05:00

...things tend to always work out for me. They found my slides and my blood counts are through the roof.

Erin from Windsor Pathology called me this morning to tell me that Lena (international center at karmanos) had called her to say that they had found my slides. Awesome...I then called Lena back to find out where they were...and she told me that Pathology had called her to say that they found them. So, they were in the Pathology department...so then I page Dr. RM's nurse (the one that was adamant that they mailed them) to be sure that they weren't looking anymore (...and maybe to see what she had to say)....she called me back a while later and was very nice (of course) and apologetic. She said that when we got off the phone yesterday that they decided to look some more (but i thought they mailed them????) and made a call to pathology...and found them.

Anyways, so my brother in law went to pick them up and all should be good!

Then, early this afternoon, I got a call from the cancer center (I had left another message this morning for the nurse to call me) saying that my blood counts were all good...in fact, they were really high. My White Blood Cell counts were around 42 (pre chemo they were 7 and normal is between 4-11) and my platelets something like 4300 (not 100% sure how high that is but normal is between 2.5 and 7.5 - so I'm guessing that the 4300 is really 43). Anyways, this doesn't mean that I don't have to worry about getting sick...but that I don't have to be AS worried. She also said that Dr. Hamm will adjust the neupogen shots accordingly for next time.

So Diletta and I decided to head to Cobourg - which is where I am writing from right now, my mom's living room. I am still going to stay away from people to ensure that I don't get sick - but it is nice to be home.

Ciao!

Another Great Monday.

2008-11-17T21:58:00.004-05:00

What a frustrating day... which is the last thing I need.

I went to get my blood work done around 10am...I went in to the blood clinic and dropped off my health card. As I suspected, there was at least 10 people who were in front of me so I ran upstairs to drop off my neupogen package (all my used needles, containers and the package they came in), ordered my drugs for my next chemo session and I also dropped off a package of old drugs. The pharmacy there is running a program to properly get rid of old drugs, apparently you shouldn't flush any medications down the toilet...never considered this before. Anyways, I then went into the chemo treatment area to speak with Sheila about the computer workstations and chairs....She was very excited. She wanted me to speak with the people that are in charge of donations and such, so she got on the phone to see if they were available and I went back downstairs to get my blood work done. I was down there for about 10 minutes when Sheila came back down to get me because Victoria and Sharon were waiting to speak with me (and Sheila said that she would do draw my blood upstairs in the chemo area). So, I met the two ladies and they too were excited but said that I needed to speak to Lynn who was not in at this time...so it was left that they Lynn would call me in the next couple of days. Sheila then drew my blood and off I went. It was around 11am.

Late last night I got an email from a friend who works in the pathology department (I didn't know she worked there...) saying that she would help me any way that she could with finding my slides. I saw her today at the cancer center working in the blood clinic and I was able to say hi and thank her...

So, after the blood drawing I went to the pathology department to see if my presence could help anything...Ug. So I was able to get in quick and talk with Erin (I believe that she is an administrator). She had spoken with the nurses and Lena from Karmanos. The nurses told Erin that they are 100% positive that they mailed them...and Erin is 100% positive that they have not recieved them. Ug.

Knowing my audience I can't curse and swear as I would like.

So I asked Erin about worst case scenario - what if the slides are lost? Can I get more slides made...she wasn't sure and she said that she would have to go speak to the director. So she came back and said that he wanted to talk to me...ok. So I went in to speak with Dr. Shum who is the Medical Director and Chief of Pathology. Essentially, he just wanted to let me know that there is a chance that if they were to try and make new slides, it may not work. Several reasons; not enough tissue (I had 33 slides which requires a lot of tissue and these were cut from 3 blocks) and the results of how they treat the slides may be different. My discussion with him was at least 15min and much more complicated than what I am typing...What he recommended that I do for when I wanted to deal with Dr. Gascoyne, is to sign out the blocks myself, so that I am responsible, and let Dr. Gascoyne to the slide preparation. I am not sure if this will fly. I'll have to find that out...

So...I went home and paged Dr. Runge Morris's nurse again to see if they had discovered anything. She called me back fairly quickly and we talked for about 10min. Bottom line - they are 100% positive that they were mailed and that there is nothing I can do. She threw out a ton of scenarios and options for me....I could contact the postal office in Windsor because it is waaay different than the one in the US because it is waaaay smaller and it could be just sitting on the shelf (are you kidding me?). Or, it could be sitting on the shelf at the Windsor hospital mail room...so I should go look there. OK I said...so what about the US postal service and the postal office at Karmanos...it could just as likely be there...she stumbled on that one and referred back to how small the Toronto office is...yes, she said Toronto. I asked why it would be sitting on a shelf at the post office...she said a wrong postal code...so you're saying you may have written the wrong postal code - stumbled again...no...it could have been read wrong. Ug.

So who is accountable? and how? .......

Anyways...looks like I'm screwed. I may be totally screwed too because I may not be able to get my slides redone.

So then I called the cancer center to get my blood work results. What happens is that I leave a specific question as a message for my nurse to call me back. This was around 2pm because I know it takes a few hours to get the results and I really don't want to bother them. I waited patiently until 4pm to call them back (because the center is open until 4:30) but my nurse had already left for the day.

More cursing and swearing.

So no blood results. I hope to find out tomorrow.

Other than all the crap today...I feel fine. No head ache or nausea.

Ciao.

Lets hope for good Blood Counts!

2008-11-16T23:53:00.002-05:00

I sure hope that the Neupogen shots worked and I will have good White Blood Cell and Platelet counts. This will mean that I don't have to be AS worried about getting sick or catching some type of virus/infection. If the blood counts are good I'll likely head home to Cobourg with Diletta and Isabella for a visit (Tuesday to Friday). This will be great! My mom had a designer furnish a baby room for Isabella and she hasn't even seen it yet. It has been done for months and she hasn't even gone in to take a peak...so there will be a big un-veiling.

Also, the Ladies Night Out (LNO) event is happening in Cobourg. This is a fundraising event that has happened for the past 3 years as a benefit for Attitudes For Education - The Clay Elliott Scholarship foundation, of which I am the chairman. If you are not familiar and would like to be, please visit here: www.attitudesforeducation.com . In addition to the LNO there is a benefit concert for the foundation the same night ... to be put on by the Jim Cuddy Band (from Blue Rodeo). WOW - this is huge! This is going to be an amazing night - 400 people that will be exposed to our foundation and the great entertainment of Jim Cuddy (I bought a Best of Blue Rodeo CD a month back and have been listening to it in the car). We will likely make about $10,000, but we also hope to dramatically increase the awareness of the foundation and the scholarships that we provide. There have been radio and newspaper ads running for the past couple of weeks. I doubt that I will attend either (too risky to be exposed to sick people) - but I am very much looking forward to seeing some people and maybe driving by to see everyone going in.

When I was getting my last group of chemo drugs I was talking to one of the nurses, Sheila, and she is working on getting some new computer workstations at the cancer center. When I say working on, I mean trying to raise money to buy - She works as a nurse and is trying to raise money to make the Cancer Center better. Very cool. They want to set up 2 kiosk's for patients to research cancer topics. They plan on having reputable websites bookmarked for patients to search, read and print. This is very important for many reasons; there is a lot of bad information on the Internet; people that do not have computers or Internet access; older people that are not sure what they are looking at, etc etc. I have spoken with a friend of mine, Shannon, at Working Environments Inc ( a company here in Windsor that sells desks, chairs and such) about height adjustable/wheel chair accessible desks and she is going to get me a great deal. I would also like to see if I can get someone/company to donate computers, printers and other accessories.

Another thing that bugged me about the chemo treatments were the chairs for my family beside the bed. Being an Ergonomist, I can't let this go. They were hard and uncomfortable. I sent an email to Shannon at Working Environments regarding this as well...Shannon will likely help me a ton! I'm not sure about paying for this...so I may end up trying to raise money or talking to the manufacturers. We'll see...I plan on talking to Sheila tomorrow to see where things are at on her end.

Finally, one other thing that I did was get in contact with the Lymphoma Foundation Canada ( www.lymphoma.ca ) . I did this because they have 2 things I am interested in...first is the support groups that they have set up in various city's....why not Windsor? I'll see if I can help with this. Also, the money that they raise appears to go to some great initiatives. The have a "know your nodes" education program (this is very important for early detection), a fantastic resource manual (that I found myself) and they provide research fellowships for research. I have reviewed their website and like what I see. You may remember that I was questioning where all the money goes for cancer research...for this organization, it appears to be very transparent (I read their financial statements).

Just because your body slows doesn't mean that you mind has to. But don't worry Mom, Grandma, Aunts, Uncles, cuz's, etc....I won't over do it. Promise.

If anyone reading this has any ideas of how they can help...please contact me!

Let's hope for good blood counts!

Jeff

I was stabbed 5 Times today....

2008-11-14T23:00:00.004-05:00

A much better night and day!

I apologize again for complaining so much yesterday...but I am trying to be as honest and detailed as I can.

Today was good...I had a few bouts of nausea and very minor headache. I feel about 90% and will likely be 100% by Sunday! I can't wait. I think that this chemo session has prepared me even more for the next 6. I have read some other peoples experiences with similar treatment and they too were experiencing a 9-10 day symptom cycle.

If you've been reading my blog, you'll know that Diletta has had a bit of a hard time giving me my needles. Well today was the worst one yet. She ended up sticking me about 5 times before she gave up. Luckily, Val (her sister) was her to help out. I'm not sure what we are going to do about the next 2...I might have to do it myself.

Some bad news regarding my slides...seems as though they are lost. This is not good. I've spoken to Dr. Runge Morris's two nurses - ( Dr. RM is the Karmanos Oncologist that I handed my slides to) and Erin at the Windsor Pathology Department and neither have my slides. Dr. RM's nurse told me that she mailed them to Windsor Regional at least a month ago, about the same time that she mailed me my CT scan and Xray CD's. I got my CDs at least a month ago. Not sure what to do...

I am not going to post Saturday but will Sunday...have a great weekend!

...a few more pics...Isabella had great hair today!

Ciao.

Last night SUCKED

2008-11-13T15:41:00.006-05:00

This will be a lot of complaining. Sorry.

Last night sucked. I made another mistake. I was going to head to bed for about 12 last night and had planned on taking some gravol to help me - as per the usual. Around 11:30 I heard Isabella crying upstairs - for longer than usual. Diletta has a nightly routine where she bathes, feeds and puts Isabella to bed...but she kept crying. So I go upstairs and the crying is getting louder as I get up the stairs...odd...I see Isabella in her crib crying without Diletta...so I rush into Diletta's room and turn on the light...no reaction...I go over to the bed and grab Diletta...she wakes up - but looks like DEATH. I go back to Isabella's room and pick her up. Back to Dil's room and turn off the light and tell her to go back to sleep until Isabella needs to feed, which Diletta has to do.

I go back down stairs and hang with Isabella so that Dil can sleep. Diletta comes down around 3am and I have a crazy ass head ache, nausea and stomach ache. But I know that Diletta needed some peaceful sleep so I pushed through it.

I took a gravol and went to bed. What a horrible night. I was up many times and tossing and turning with a crazy headache. It felt like I was wearing a hockey helmet that wast too tight and someone kept tightening it - I had never had a whole head headache. Freaking sucked. That and the nausea and stomach aches...then came bone pain in my legs. That too was a first. I got up at 9ish and felt the same...more drugs and back to bed. I woke up at 1pm feeling a bit better, but still with a headache, nausea, stomach ache and weird pain in my legs. Oh ya...and the tips of my fingers are numb.

Holy Complaining. I am sure this will get better in a few days. I would hate to feel what my symptoms would be like right after chemo without all the anti-nausea drugs. I don't know if I could do it.

Anyways, it will get better. Now for pictures:

Ciao.

Wasted Wednesday...

2008-11-12T21:19:00.004-05:00

I guess that I am just going to have to get used to nausea. I've had it for pretty much the whole day...combined with a headache. Ug.

I ended up taking the 2 gravol last night to get to sleep...worked fantastically, but I woke up very groggy and had to go get my blood work done in a rush because Diletta had an appointment at 11. All worked out well.

I called the Windsor pathology department today to find out if my slides were in and to see what I had to do to get my slides sent to the BC Cancer Agency. They didn't have them. ???? It has been about 5 weeks...that is odd? So I called Karmano's to see when (or if) they were sent to Windsor...and sure enough, they don't even know where they are. I hope this doesn't get ugly. I know that I have backup specimens in Windsor (so they told me) - but the slides are not prepared and I don't know what it would take to get more done...Cynthia from Karmano's pathology is going to call me tomorrow...She has to look through the piles for them. What the heck does that mean?

Diletta did my shot again today...and AGAIN stabbed me pre-maturely. Thank goodness it didn't hurt.

Ciao.

Wasted Tuesday?

2008-11-12T00:37:00.003-05:00

The prednisone kept me up until 4am...I woke up at around 9 feeling crappy. Diletta made a great breakfast but then the nausea started...I went back to bed around 1pm, but my mind was racing.

I took a gravol at 2pm to get rid of the nausea (kinda worked) waited until 3pm to try and sleep so Diletta could give me my neupogen shot (she did pretty good this time...but still had 2 pre-stabbings). I fell asleep at 4pm and woke up at 7pm - feeling like crap again. It is a weird feeling that is difficult to describe. The nausea kicked in around 8pm so I took a Stematil - which only kind of worked - but, it doesn't really make me drowsy like gravol...now it is 1am and I feel like I'm boiling and gonna vomit. So, I'm going to take 2 gravol and hit the sack.

See what I mean by 'wasted Tuesday'?

I hope tomorrow is better and that I have good blood counts.

Ciao.

November 10

2008-11-10T22:07:00.002-05:00

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I started the ball rolling with getting Dr. Gascoyne to review my slides. I have now heard from another source that he is not only THE top lymphoma pathologist in Canada, but also a world renowned lymphoma pathologist. What I am really after is clarification with the Grading. I have also heard more about Follicular NHL transforming...this worries me a bit. So, staying on top of this is important.

I also called the doctor to discuss whether or not I should get a flu shot...I was called back and the nurse told me that I could get one about 1 week before my next chemo. I plan on waiting for my blood counts on Monday November 17th to make a decision. If high, yes...if not, no.

I screwed up just like last chemo drug session - I forgot to take my Prednisone at lunch today. So I took it about 45min ago...I hope I'm not up all night. Diletta and I got focused on my Neupogen shot and I completely forgot about taking it. Idiot. I could blame it on what they call "Chemo Brain" ... but nope. I typed out a freaking calender listing the drugs to take and at what time...so I'm just an idiot.

Also, tonight I had a bout of nausea...it hit me around 7pm and is still kind of lingering...that sucks. Just a constant feeling of "I'm about to barf" ... damn.

Ciao.

Good Weekend....lots of Pictures!

2008-11-09T19:17:00.008-05:00

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Thankfully, not a lot to report...

Friday night went very well. I woke up again in the middle of the night feeling nauseated, but just tried to get back to sleep without drugs. Probably wasn't the best decision, but it worked. I woke up around 7:30am, had some cereal and watched TV for an hour and then went back to bed...until 12:30!!! That is at least 12 hours of sleep and I don't feel guilty. My body needs to work. The only bad thing was likely the lack of water intake...

What woke me up was a phone call around noon...I went downstairs at 12:30 and the nurse from comcare had called and wanted to come at noon. My mom was the one who answered the phone and didn't really know much...so I called them back and tried to get a hold of the nurse who was to come for the visit (the nurse was coming to help us with the Neupogen shot). Anyways, so the nurse called me back about at about 1pm and wanted to come then...I said no. I was given pretty specific instructions from my doc and nurses that I was to take the shots 24hrs apart, which means that I am to take them at about 3pm each day. She said that there was a lot of paper work and that I could take the shot an hour earlier or later ... and it wasn't a problem. Ummm...NO. Come at 2:30 and I'll take the shot at 3pm. ...but there is paper work and ... NO, come at 2:30 and I'll take the shot at 3pm. OK..bye.

Made me feel like I was interrupting her Saturday...sorry, but deal with it.

So, she shows up and has an OK attitude (by the end she was great...we just had to charm her a bit). The paper work took about 20min and then we started with the shot. So, the purpose was for the nurse to show Diletta how to do it...It seems like it should be simple, but it is kinda freaky. Diletta got the needle all prepared....take the vile out of the container, open the vile, wipe it off with the alcohol pad, get the syringe out, get the needle out, attach the needle to the syringe, pull 1.6 of air into the needle and press that into the vile, turn it upside down and let the vile fill the syringe, flick the air out of the syringe and fill the syringe with 1.6, pull the needle/syringe out, wipe area on Jeff to be STABBED, pinch the skin with forefinger and thumb and STAB Jeff...ok... now for the hard part. Diletta decided to do a little test stab. hahahah. This hurt a bit...a little prick in and out...ooops. A couple of deep breaths and she was able to do it. Finally.

The main concern for me with the side effects of this drug is the bone pain. I have been through quite a bit of pain in my low back in the past and don't really want to feel any more...but apparently I am going to have to. I am getting pain in my low back, but it is more dull and spread out. To review, the neupogen shot works to increase the creation of the white blood cells, which occurs in the bone marrow and therefore, builds pressure inside the bones. Kind of weird, but glad it feels like it is working.

Saturday night went even better...Diletta went out for dinner at The Keg with Marco/Melissa, Val/John and Rob/Steph while I stayed at home with Isabella and watched the Leaf game! (they won 6-3 against Montreal). I asked Diletta to bring me home some Sliders (these are amazingly fantastic little hamburgers) which I wolfed down 2 of them (only about 2 oz each) just before bed. I woke up with a barfy stomach but couldn't tell if it was chemo or slider related...so lets write it off as slider!

The nurse came again today (last time - the next 7 are solely Diletta's Responsibility - should I be worried???). Diletta pulled it off this time a bit better...she decided to poke me pre-maturely again (revenge?) but it didn't hurt like the first time.

Other than that...all is great!

Now for Picture overload:

Ciao!

Post Chemo #2

2008-11-07T18:39:00.009-05:00

Soooooooo much better than last time.

I took the Kytril at 8pm and then the Stematil at 8:30. I was feeling very crappy but was able to eat and drink. I went to bed around 10:30 and fell asleep within and hour. I woke up at 4am and took two Gravol and woke up at 10am. I ate breakfast (fantastic banana and blueberry pancakes that my wife has mastered) and then took my Prednisone and Pariet. I went back to bed at around noon. I felt pretty good but I know that I have to take it easy - so I chilled out and tried to watch a movie. I ended up falling asleep and was woken at 2:20 to go to the cancer centre for my neupogen shot.

The nurse showed Diletta and I how to do it and it seems like no problem...it might be a bit freaky for her, but she can do it. A nurse that the Community Care Access Centre set up will be coming to help/show/do it. So we have a back up. We could arrange to have one come all 10 days, but figure that we will be able to do it.

Now, a few pictures!

Diletta and I while I get my chemo. The drugs that I get through my port-a-cath are 'hung' on the pole on the left. The nurse programs the flow rate and timing. If I need to go to the bathroom I unplug the machine (it has an internal battery) and I roll it into the bathroom. The machine on the right is for checking my heart rate, blood pressure and amount of oxygen in my blood. This is checked quite frequently...I'd say every 30min or so.

Graham, my cousin, at his condo in Toronto:

Kym and Brian, my aunt and uncle, I think they were somewhere in Toronto:

Kate, my cousin, in PEI just before her hockey game (which she won - she's THE goalie):

I know that the rest of my family wore their shirts and I thought of that often. It really meant a lot! Thanks.

I wish I would have got everyone to take pictures...next time!

Jeff

Chemo Day #2

2008-11-06T19:29:00.003-05:00

All went fairly well today. I have a mild headache and stomach cramps right now...but hopefully they will subside.

Now for the long version...I took my Emend (anti-nausea drug) at 8am this morning and then my mom and I headed to the cancer centre. The Emend is to be taken one hour before chemo starts. I got into the chemo room for about 8:30 and jumped into bed #8 (my number). The first thing I asked about was my blood counts...Dr. Hamm had told me that my neutrophils had to be a minimum of 1.2 to get treatment (normal range is 2.0 - 7.5) and mine were at 1.3. The nurse told me that the actual cut off is 1.0 - so Dr. Hamm is being cautious - Good. I didn't write down all my other blood counts - but some were still low, but better.

They started me off with pills (tylenol, zofran, benadryl, prednisone and pariet). At around 9:15 they started me on the Rituxan. This drug was given to me through my port and was to take about 90min. But, because I had the reaction last time, they were decided to go at it a bit slower. So, it would be 150min (2.5hr). During this time, the nutritionist came by to talk about my nausea....blah blah blah...eat high protein foods. I also asked her about sushi, because I love it, and she said to avoid it. Boooooooo.

At noon I took the Prednisone and Benadryl pills again....the rest of the afternoon was Cyclophosomide, adriamycin and the vincristine. I'm not sure if I mentioned this or not, but the Adriamycin is given by hand using a large needle and injected into the port. It is bright read and is supposed to make my pee the same colour (I forgot to look last time cuz everytime I peed I was sitting...if you know what I mean). I'll be sure to look this time.

After the last drug, Vincristine, they do one last saline solution to flush out the line. This all ended around 3:30pm.

Now lets hope that I have a good week in terms of side effects. The Emend should help, and I'll be taking the Kytril and Stemasil as I was told (not like what I did before - and substituting them for the gravol - I'll be taking gravol in addition to). Also, I'll be taking the neupogen for 10 days so that should help my blood counts.

P.S. I mastered how to go to the bathroom in that place without touching a thing - except my thing. There is one bathroom for all the cancer patients and it is kinda weird going in there...Everyone has to walk with their IV and this likely makes it difficult for a lot of people and the results end up all over the place - if you know what I mean.

I have some pictures but I really don't feel well now...I'll post tomorrow.

Ciao,
Jeff

Chemo Round #2 Tomorrow (Today)

2008-11-05T22:26:00.005-05:00

I went for blood work today at around 11am and I was the only person in the lab. If you remember last week it was packed. In addition to the regular CBCs I requested my blood type, this required an additional 2 viles of blood.

After the blood work, I went up to get my drugs for the next week. I picked up my Prednisone, Pariet and Kytril (I received all of these last time). I picked up a new drug, Emeral, for anti-nausea. I am to take this 1 hour before my chemo starts - which means that I'll take it just before I leave for the hospital. The other drug that I'll be getting is Neupogen. This drug I have to inject for the next 10 days starting 24 hours after I am done Chemo. This means that I have an appointment at the cancer center for 3pm on Friday. At this time they will teach Diletta and I to self inject.

I didn't get a call today from the Cancer Center (re: blood work) so I guess that I am all clear for chemo tomorrow....

I had mentioned in a previous post that my cousin Kahley had t-shirts made for the entire family to wear for when I go in for Chemo....my cousin Kate sent me a few pictures wearing them today...

Did I mention that she loves her dogs!

Ciao

Still Wallowing in Monday's News

2008-11-04T23:46:00.003-05:00

This cancer is serious stuff. I have an overwhelming feeling of gratefulness right now. I have met a few people in the past few weeks that are in very serious situations. Not to down play what I have too much - but man do I feel lucky right now (I hope it lasts). The cancer, stage, grade and resulting prognosis for me is really good. I have a long road ahead but I know that I will prevail - and thank goodness I have all of you. Just knowing that people are reading helps me.

I have looked a little further into the different groups, societies and foundations for lymphoma. I hope to get involved in some form or another and look forward to doing so. From everything that I have read so far there is a lot of research being done and a lot of new drugs on the door step for treatment.

It appears as though I'm not going to lose all my hair (I have also read that just when you think you won't lose it...you lose it). My hair is thinning - a little faster than the past few years - but not falling out really fast. Everything feels fairly normal but it hurts a bit to rub the hairs on my head...who knows? ... and who cares - it's only hair.

I am getting my standard CBC (blood work) tomorrow. I have to hope that my blood counts are high enough for me to get my chemo treatment Thursday. Of everything that they measure in the blood counts my red blood cell count was normal and this is the only count that I would actually 'feel' the effects if they were low. The red blood cells carry the oxygen; so if they were low I would feel tired - and I don't. So lets hope that they are good.

ciao.

Wooooooooo Whooooooooo

2008-11-03T14:58:00.011-05:00

Mostly great news at the doctor.... some of this is review but now from the doctors mouth:

CT scan of pelvis and abdomen all clear

Bone Marrow - all clear

MUGA - 74% (normal is 50% or greater)

Spinal fluid - all clear. Elevated protein levels but not sure why and Dr. Hamm is not concerned. When I first had the spinal tap I was given a shot of chemo as a preventative measure and I mentioned in my blog that she told me that I would be getting 5 more Spinal Taps. At the time, I thought it was for testing, but it is part of the treatment for this type of cancer - as a preventative measure. So I'll be getting five Spinal Taps within 2.5 weeks right after the CHOP-R.

Gallium - there is activity in sub-mandibular area in the salivary glands. Dr. Hamm is kind of concerned with this and will continue to monitor it. It may even be gone already (because it was pre-chemo) and likely isn't Lymphoma. She does not want to remove this with surgery because it is a horrible surgery (and it could be gone). She also wouldn't radiate this because I would lose my teeth. Yuck.
LDH levels - 125 (no idea what that means) but it is normal.

Bottom Line: Stage 2 and low risk. FANTASTIC.

I asked a few more questions...

Stage 2 because: The cancer is only on one side of the diaphragm (this was found using the CT scan - negative results for pelvis and abdomen); Negative bone marrow biopsy (this was found doing the bone marrow biopsy and aspiration); Negative spinal fluid; and no B symptoms (night sweats, unplanned weight loss and fever)

Low risk is based on the the FLIPI (Follicular International Prognostic Index) score...see this link for more information (Click here). Essentially, I am a 0 (zero), or LOW risk because I am under 60 years old, Stage 2, regular LDH levels, regular Hemoglobin and less than 4 extra nodal sites.

Excerpt from the above noted website:

In the pre-Rituximab era patients with 2 or more risk factors have less than a 50% chance of relapse-free and overall survival at 5 years. However the proposed revised IPI indicates since the inclusion of Rituximab with CHOP there are three distinct prognostic risk groups.

0 risk factors, very good - 90% progression free survival @ 5 years
1-2 risk factors, good - 80% progression free survival @ 5 years
3-5 risk factors, poor - 50% progression free survival @ 5 years

Blood work results - my results from October 22 were normal and on the 29th I had low White Blood cells ( 1.8 & normal range is 3.6 - 11.0) and Neutrophils ( 0.3 and normal range is 2.0 to 7.5).

Blood work (Complete Blood Counts - CBC) - we are kind of concerned with the timing of all of this. As of now, I am to get my blood counts every Wednesday. This is mainly to fall in line with the fact that I have to get blood work done just prior to my chemo sessions (which are every 3 weeks on Thursday's). The reason for this is to make sure my WBC (white blood cells) and platelets are high enough to get the chemo. The concern is whether the timing of these tests is appropriate. The range of critical time is from day 6 to day 14 and Dr. Hamm noted today that day 10 is the most important. So...why do I not just get tested on day 10? (once again, I am currently tested on day 6, 13 and 20). I feel that I should know when my blood counts are low...I should be more careful when they are...So, the solution, as discussed with Dr. Hamm: different timing for tests and Neupogen. I will now go for my first blood work on the Thursday after the chemo and the following Monday (days 7 and 11). In addition, I will take Neupogen for the low neutrophil counts, these are self injections take for 10 days after chemo starting 24 hours after chemo. The bad thing about this is that it can cause your bones to hurt - especially in younger people. This is a bit worrisome. BUT, if I don't have to worry about getting sick and going to the hospital...OK.

The CCAC nurse (Judy) came to see me and will arrange for a nurse to come to my house post chemo and teach me how to do the injections.

Nausea problems post chemo. I took the Kytril once and the Stematil once post chemo and didn't take them again because i was sick after them. Dr. Hamm said that I should have stayed on them and I likely wouldn't have had the on going nausea. So I'll do this. Also, she wrote me a scrip for Emend which I start taking one hour before chemo starts. I don't know much about this...but will soon.

I asked about how we know if the chemo is working or not...I will be getting a Gallium Scan and CT scan after the 4th round of chemo. I will also be getting a MUGA at this time to make sure my heart is ok. After 6 cycles I will be getting a PET scan (done in Hamilton which will likely be covered by the government by then - it currently is NOT covered and costs $3,600).

There is some controversy about the grading of Follicular Grade 3. The controversy is fairly complicated and surrounds whether it is Grade 3 A, B or Pure Grade 3. Dr. Hamm got the World Health Organization (WHO) pathology book out and we talked a bit about the number, type and orientation of cells in combination with my Pathology report to determine what type of Grade 3 it is...she figures that it is Grade 3 B. But not sure. She also noted that this will not change the prognosis or treatment so I shouldn't worry too much about this. Either way, I am going to proceed with sending my slides to Dr. Gascoyne at the BC Cancer Agency.

After the initial treatment plan (8 cycles of CHOP-R and 5 shots) I will be going on what they call Maintenance Rituximab for 2 years. Every 3 months I will receive a 90min dose of Rituxan. I have to decide whether or not I keep my Port in for that time...I should be fine with my veins...but I'll wait and see. I think there might be an issue with having the port flushed once a month - so that might be a pain in the ass.

Diet. Canada food guide....don't take supplements, don't take the anti-oxidants, etc etc...trying to kill my immune system to save me...
Nausea and Food - Dr. Hamm "Don't eat food that causes nausea" ... hahahah .... Dr. Hamm is a Ham.
Acupuncture - yes can do...

So this is a great day...now, lets kick the shit out of this weak ass cancer!

ha.

I got in crap from Grandma for the 'prison picture' - so here is a 'nice good grandson pic'...

Ciao

My new look...

2008-11-02T22:08:00.011-05:00

A good weekend...I have an appointment with Dr. Hamm (Oncologist) tomorrow and I have created my list of questions, only one page, so I should have a lot of information tomorrow. Lets keep our fingers crossed for stage 2, negative bone marrow/spinal fluid/CT/LDH. In the meantime...here are some more pictures...

...I shaved my head...

Ciao

Happy 'yawn' Halloween

2008-11-01T09:31:00.001-04:00

Very tired yesterday....napped at 10:30am for 2 hours and slept on an off during the day. Then I fell asleep watching TV before 10...went to bed and woke up about an hour ago.

I'm losing my hair in small bunches that only come out if I pull them and it hadn't really affected my head ... until today. So I might be shaving my head today to control it somewhat...

The Cipro drugs I'm on don't seem to be effecting me at all unless the tiredness is related - but that is likely the low blood counts.

I'll be posting pictures for tomorrow's blog...we took a bunch of Isabella last night for Halloween...holy cute!

Are the Cancer Gods Playing a Trick on Me?

2008-10-30T23:03:00.000-04:00

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I got up this morning and went for a Timmy's...when I got back Diletta told me that the doctor's office had called and that my blood counts are down. What the hell? I have been told several times that the doctor gets my blood work results within 2 hours (normally within an hour) of me going to the lab. I was at the lab yesterday morning so the latest that they would have got them would have been early afternoon...Having not received any results Diletta and I went grocery shopping and did a few other things and she had some friends over. So this call disturbs me on a few levels.

First, and most importantly, my white blood cell count and platelets are down (Not sure what else?). So the doctor called in a prescription of Cipro for me. Cipro is a broad spectrum antibiotic that I am taking as a preventative measure. This also means that I have to avoid crowds, sick people...etc etc.

Secondly, I find it a bit scary that they seem to have screwed this up. Hopefully I am over-reacting. But my health is important to me and I want to know on a minute by minute basis what is going on. Wouldn't we all in this situation? I hope this isn't a symptom of other things that I should know about. I may be a boring case for them...but this is the most important case in the world for me.

This all kind of made we ansy all day... I guess bitchy is a better word. Diletta might even use another word. Ug.

Anyways...about the title of this blog entry...I think I started to lose my hair today...pubic hair that is. Of all the places to start losing your hair... hahahahahahaha...

Add to all this ... I read too much crap. I'm confused on my diagnosis, more specifically, the Grading part. I have Grade 3 (high grade) but everything I read talks about Grade 3 a or b....or pure grade 3 that is very rare. I have to ask the doctor a lot of questions Monday.

Overall, a frustrating stressful day for me (and Diletta) - with a bit of humor thrown in!!!

Jeff

Germ O Phobe

2008-10-29T23:50:00.000-04:00

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Not a very exciting day...I guess that should be a good thing...

I went for my blood work this morning and there were people standing in the waiting room, that's how many people were there. The clinic is only for cancer patients and works like a walk-in; generally, there are no set appointment times. So for me, I go every Wednesday any time I want. I go in the morning to ensure that the doctor gets my results that day (the doctor gets them within 2 hours and if there is a problem, they call me immediately). Of the people in the waiting room, you can't tell that they have cancer. I have to remember this for everyday life...you never know what someone else is going through.

One thing that surprises me is the number of people with cancer. On my chemo day every bed was full (15 people) and there are chairs on the other side that I couldn't see, but I think there are about 10 of them and likely full. I wonder if they are full every day? , other than being at the cancer center, I would have no idea that they have cancer. I see a lot of middle aged couples bringing in a parent in their 60's or 70's. Once again...the majority of people are older.

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Diletta and I went grocery shopping today and I found myself being a bit of a germ-o-phobe. I didn't feel that comfortable with that many people around...I need to get more specific information about how germ-o-phobie I have to be...

Ciao,

Jeff

I think I'm losing my hair...

2008-10-28T22:29:00.000-04:00

Probably a bad joke in the title...I've been losing it for years. hahahaha. I hope when it is all gone I can laugh...

Not much to update on today...

I met with Manny today, he is an acupuncturist, homeopath and a Massage Therapist. He is a great guy, genuinely kind and helping me out of the kindness of his heart. Really, we just discussed how my case came about and the drugs that I am taking. I wasn't prepared to do and treatments, I just wanted to find out some of the things he was thinking that could help me. Using acupuncture he can treat nausea, headaches, pain and likely anything else that comes up. Based on the location of the headache a different pressure point is 'pricked' to ease out the pain. For example, Kidney headaches generate just above the eyes and the pressure point is in the V of thumb / index finger. But, as I told him...my new boss is Dr. Hamm - whatever she says goes!

The other thing Manny and I discussed is eating for your blood type. The idea behind it is that each blood type have different enzymes, some of which are better at breaking down and utilizing certain foods and other enzymes that don't exist can't help break down certain foods.

Anyways...that's all I got today...hopefully the hair joke was good!

P.S. More blood work Wednesday morning...

Ciao

Super Strikes Again!

2008-10-28T00:28:00.000-04:00

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I had a great conversation with Dr. Nathalie Johnson who is a hematologist (essentially a blood doctor) with the BC cancer agency - she spent about 30min with me. A high school friend of mine who is a statitition is working at the BC Cancer Agency and has hooked me up. I have received some great insight from him as well and will likely post it tomorrow. I had sent Dr. Johnson an email that outlined my story and we discussed where we were at in terms of staging and the fact that I had Grade 3. I'll only discuss the important points that I took from the conversation.

Maintenance Rituximab - she asked if it had been discussed yet (it hasn't) and said that I should ask my doctor about it. I will...apparently, some patients get this regiment every 3 months for 2 years post the treatment cycle that has been prescribed. This means that I could be getting treatment for 3 years. Holy Crap.
I asked about acupuncture, homeopathic remedies for nausea, avoiding sugar, avoiding white flour, etc ... Her response: "There is no evidence" ... but they say there is, again "there is no evidence". Ug. This bothers me...I spoke with the nutritionist who says follow the Canadian food guide...eat eat eat....I've spoken with several doctors now...eat, rest, drugs...What really bothers me is that I am not doing anything to help fight this. I should eat right...but not change my diet or avoid anything. Exercise should be kept reasonable...nothing to strenuous. I guess all I can really work on is my psychology... This is still bothersome and confusing.
I will lose my hair and it could start as early as 2 weeks after the first chemo treatment. That means that I could start losing my hair Thursday. I am pretty sure that I will be ok with that - but who knows. However, one thing that will change is other peoples perspective of me, and this has been very weird so far, as I have mentioned in other posts. People will start to look at me different and treat me different. One good thing is that it is the winter time and it is easily hidden with a toque (she said toque - so I know she is Canadian!!!..hahahaha). Funny isn't it...I have to hide it from others for their sake...She brought this up because it is a large source of stress and anxiety for a lot of patients...and that is very BAD. Which leads me to my next point...
Keep stress and anxiety low...try to maintain a normal life. Taken out of context, this sounds weird because I have cancer, how can I maintain a normal life? But, what she had to say was very comforting...always keep in mind that there is a plan in place that is being executed and it is the means to an end. All will be good in the end!
She has spoken with Dr. Gascoyne, who apparently is THE lymphoma pathologist in Canada. I will speak to Dr. Hamm about this. Keep in mind that any differences will likely not lead to a change in my treatment. I am interested in proceeding with this though, and will likely do so.
In terms of Rituximab - a wonder drug (this is part of my chemo) and it has increased survival rates across the board.
In terms of research...it is a really really good time - they are in the process of sequencing Lymphoma (mapping the very small genetic abnormalities) which will lead to the development of even more wonder drugs. I asked more about research (I will talk more about this below) and she directed me to the Lymphoma Research Foundation. I will spend some time on this site to see what is being done.

Radioactive man struck again...Diletta, Isabella and I headed across the border for some shopping and I set the detector off again. I didn't shut the border down this time, but did have to drive into the stand alone detector and then we had to go in to the office so they could test me again...I tested positive for Gallium 67 with a rating/score of 19.8. I'm not sure what the 19.8 is but I do know that the Gallium makes sense as I did have a Gallium scan. I was very surprised that I was detected again...I'll have to find out how long this crap can stay in my system (Dora - maybe you know?).

Cancer research - Does anyone wonder where all the millions and millions of dollars go that are raised to fight cancer? And what are 'they' researching? A cure? Drugs? Prevention? What should they be researching - I would think prevention...but all they look for is a cure...Why is that? Admittedly, I am not educated about this, but I plan to change that. As with myself, I feel as though I have to do something...but I want to ensure that what I do makes a difference. You will hear more about this.

I didn't meet with Manny (acupuncturist & more) today. Instead, we set up an appointment for tomorrow at 3pm. I will take what he says and discuss it with my doc on Monday.

Ciao,
Super

Excellent Weekend

2008-10-27T01:29:00.000-04:00

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I feel 100%. Confusing.

I played squash Saturday, pushed too hard, but it felt good to do something so active. The only thing that really bothered me was the port - the muscles and surrounding area are still kind of tight, likely because of scar tissue. Other than that, I thought I was gonna barf cuz I'm so outta shape.

So...Great weekend.

I'll have a few more updates tomorrow because I will be talking with a doctor in BC and Manny who is going to help me with some acupuncture and eating habits (I'll be sure to talk to my Doc before I do anything).

....Jeff

De-Stitched Friday!

2008-10-24T21:48:00.000-04:00

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Today was way better.

I took extra gravol last night to ensure a good nights sleep...and it worked! I woke up a bit groggy, but it was worth it. I headed to the hospital to get my sutures out (from the port-a-cath surgery). I freakin got lost in the hospital...I finally found the NEW location of registration and they sent me along to radiology. I waited for about 5min there and walked to room 0 (zero) - who the heck names a room zero? I went in took off my shirts, she ripped off one bandage...looks good, second bandage, looks good...grabbed some tweezers and 'zip' - pulled out an inch long piece of fishing wire...all done...see ya!

Went home and showered for 15min. OH ..... MY ..... GOD! fantastic....it had been 10 days (I'm sure Diletta is really happy now too).

Valentina (Diletta's sister) came over to babysit so we could head to chemo class...so to school we went. From what I understood, there were to be presentations from a nurse, the nutritionist, pharmacist and social worker - all followed by a tour of the facility. The pharmacist didn't show up and there was no tour. This did not affect me because I had spoken with the pharmacist and been to chemo...but what about the others?

There were 11 of us in the presentation, and from what I could tell, only 6 of us with cancer. The presentations were pretty good...and they allowed us to answer questions (I asked the most - as per usual). Some things that I did learn include:

results from blood work (cbc) get sent right to the doctor within 2hours and if there is an issue, they call you immediately

with regard to my white blood cell count - I should avoid crowds and sick people, monitor my temperature

Diet - nothing (same dietitian as before). This has been the most frustrating part so far...I want to know what to eat, what not to eat, etc. She just says: "following the Canada food guide" - great...

Like I said, it was general and I have been through most of it already. But now looking back at the handout (72 slides worth) not everything was covered. I hope this isn't a sign of complacency at the cancer center - but I fear it is. The presenters didn't take time to find out who was in the presentation and did not address anyone specifically. So all in all, I wouldn't say useless...but close. I feel bad for the others in the presentation that missed out on the people that didn't show up.

All in all .... I had a pretty good day in terms of symptoms. I had some weird things going on in my chest - but nothing too significant and I'm not worried.

Regarding my blog, I wanted to share some statistics. Using google analytics I can track a whole bunch of stuff...so, here is a quick summary:

51 people have subscribed

2,117 visits to the blog (some people could have visited several times)

6,227 page views

651 different people have visited

12 countries of origin

74 cities in Canada

20 states (in the US)
4:45seconds average time on the site

I can also tell the number of visits from a particular city...so if you are from say Brisbane Australia (Hi Chris, Rich and Wendy!!) I know you've been 14 times! So if I know you, and you live in a city that I likely don't know anyone else, I know how many times you've visited...and for how long...and when....kinda creepy isn't it...I wonder what google tracks on you!

Anyways...I'll likely take Saturday and Sunday off from the blog...I hope all goes well!

Oh ya...pic:

Jeff

Shit Thursday

2008-10-23T20:58:00.000-04:00

Woke up feeling like crap.

Felt like crap all morning.

OK mid afternoon...

Now crap again.

Headache, Nausea, bit of stomach cramps...more nausea. Ug.

Picture:

I took some drugs to get rid of the nausea...which means that I'm off to bed...getting my sutures out tomorrow (from the port surgery) - hopefully I can shower!!! Then I have 'chemo class' at 2pm - I sure hope it is useful.

Super

Pictures Pictures Pictures

2008-10-22T22:55:00.001-04:00

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So...another great day!

The only pill I have to take now is the Allopurinol - which protects me from developing gout and kidney stones from all the dead cancer cells. Crazy. I just read all the side effects and don't think that I have any ... but my complexion has definitely changed, for the worse of course.

I went for my blood work this morning at the cancer centre - no problem. Quick in and out...I was a bit disappointed because they had to prick my arm. I thought that my port would enable them to get blood from there...but as the needle lady told me, a nurse has to perform that procedure...oh well.

Around 7pm I experienced some nausea - this surprised me as I thought it wouldn't come back until the next round of chemo. Then I had dinner and it came back after that...I then talked to Patrick who told me to have a beer...I had 1/2 and it seemed to work. I am sure the 'beer' didn't help specifically, but psychologically, it is something normal.

Diletta, Isabella and I had a great day...we tried our first photo shoot ... lights, lens changes, tripods and all! Here are a few unedited results...

Pooh, Results and T-Shirts!

2008-10-21T22:00:00.000-04:00

Today was a great day...

I kind of screwed up...apparently, I missed a prednisone (steroid) pill either Friday or Saturday) and I am supposed to take the pariet with it. This might have been a problem because I was only to take 5 of the pariet (the main purpose of the pariet is to protect my stomach from the prednisone). So, we called the cancer centre to see what I should do - as per the usual, we left a message and they called me back about 10min later. Cheryl was on the phone and basically instructed me to take both pills and I can get an additional pariet before the next chemo session. No problem.

In addition - I asked about the constipation and she said that she would call in a different scrip for me. Great... (it later resolved itself) and then I asked about some of my results that were outstanding and got some GOOD NEWS (below is comprised of the conversation with Cheryl and a second conversation with Debbie - both are nurses at the cancer centre):

CT scan of my pelvis and abdomen were negative. This is an important part of staging because if there are inflamed nodes below the diaphragm, I increase a stage (I am currently a stage 2). Bottom line, this decreases my chance of increasing in stage.

CT scan result for my neck showed that the mass that was removed was completely removed - excellent! In addition, the lymph node that was swollen on the right side (below my jaw line) is still swollen...but smaller. Not sure what to think about this yet - but I will be speaking to Dr. Hamm about it at my next appointment.

MUGA scan - great. This means that my heart is good and strong for chemo.

Gallium - this scan is used to determine where the cancerous cells are. The scan showed positive results for activity in the sub-mandibular (same area where the lymph nodes are) area on left and right side - left greater than right. This means, to me, that there are cancerous cells in my neck area.

Spinal Tap / Lumbar Puncture - as far as the nurse could tell, the results show that the fluid is clear. This is good as it also plays a role in staging.

Bone Marrow - these results have to be interpreted by Dr. Hamm. This is also a big one in terms of staging. I won't know until I speak with her (November 2)

Then...the greatest part of the day...I received 2 packages in the mail from my cousin Kahley; 3 t-shirts with this logo on it:She made a whole bunch and is mailing them out to my family. Each shirt is customized on the back to read how they relate to me. Mine says "I kick ass"....Diletta's says "My husband kicks ass"....Isabella's says "my dad kicks ass"...how freaking cool is that!!!!!

I can't wait to post a family pic tomorrow with our shirts on.

One last note...I have been reading some positive thinking / energy books and was excited about what I read today. One of the chapters I read included a section on attitude and keeping it positive (this is something I have constantly been working on - for the past 6+ years). It also went on to talk about surrounding yourself with others who have a positive attitude and how that can make you stronger, but that you have to have the courage to expose yourself. This excited me immensly. The facebook group Don Patten created and my blog have opened me up to many many other people who continue to write me and share their positive thoughts and prayers.

This makes me stronger. Keep them coming.

Isabella Picture of the day:

Super

Just a Monday

2008-10-20T23:27:00.000-04:00

It's gonna be OK dad!

Today was pretty good...

Considering that I haven't left anything too private off of this here blog...I had to contemplate the following. Constipation. It sux. The drugs, and other things, just aren't working...how about I just leave it at that...

Other than the constant headache, I am pretty good right now. My numbness and tingling are 100% gone so I'm not worried about that (and I received a good email from a family friend that helped to assure me). My port incision/stitches are a bit itchy, but that is a good thing...indicates healing.

A few things that I have decided is that I am going to set up medical files at Medcan in Toronto and possibly in BC via a friend who just contacted me. I want to do this in case things go wrong and I need a plan B, C or D. Also, if the chemo doesn't work I will know now that I am prepared with seeking other opinions. Secondly, I have to stop second guessing as much as I can. This is very hard...but I'll work on it.

I tried to start reading today...but Isabella got the best of me..she is so fun. I ended up taking a bunch of new pictures of her with my new lens: Here are a few...facebook has a few more.

3 Days Post Chemo 1

2008-10-19T22:42:00.000-04:00

If anything, just a bit of an emotional day... still trying to wrap my head around the whole idea of having cancer. I really have no 'symptoms' other than those now created by drugs. A lot of drugs.

Anyways, I woke up with a headache and a crappy gut feeling, but not as nauseated. I took my steroids and other drugs, plus some Tylenol to get rid of the headache, relaxed for a bit, then took my drugs again around 1pm (as per scheduled). I felt pretty good, still crappy, but ok. Around 3pm I started to get feelings of numbness and tingling in my legs...not overwhelmingly, but still there...I kind of blew it off at first because I was walking around and driving...But it didn't go away - so I went home and read the lit on the drugs I was taking to see if this was a side effect..sure enough, it is common for the vincristine (part of CHOP) but is considered serious for Allopurinol and to call the doctor immediately if it happens...so, I called the Cancer Centre. I left a message for the on-call doctor to call me back, it happens to be my doctor this weekend, Dr. Hamm, and she called me back within 10mins. She already knew what was up and said that there is nothing I can do about it and not to worry, these are common for the Vincristine drugs that I am on - but wasn't sure about the other. She said that she will look it up and let me know if there is anything to worry about...but she is not worried. I am confident in her. 100%.

My stomach still feels weird and I have a constant headache - I guess similar to a hang over - so at least I've had experience with that (thanks James).

As for the emotional side of things....as my wife, Patrick and others have been guiding me on; I have to remember a few things. The obvious, Isabella, my wife, family and friends - I know you are all here with me. But, as for how I am thinking, I have to keep positive. The shark theory, keeping positive, praying, thinking, thoughts, relax, etc etc...all great advice and I learn something from each email, blog message, card, gift, visit, facebook note, group started, phone call, messenger message, dingleberry message and conversation. This is a struggle. And as two people just told me, the chemo will likely be the hardest part. Cancer will be gone, but the journey to beat it will be tough.

Thank you all!

Super