Thursday, February 26, 2009

...and now we wait...

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.

Tuesday, February 24, 2009

Cancer be gone....

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!

Sunday, February 22, 2009

Big Week!

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

Thursday, February 19, 2009

100th Post

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

Wednesday, February 18, 2009

Chemolite

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

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

Sunday, February 15, 2009

Sad Weekend

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.

Wednesday, February 11, 2009

The Cancer Table...

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!

Tuesday, February 10, 2009

Symptoms ....

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.

Sunday, February 8, 2009

PET Scan Booked!

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.

Thursday, February 5, 2009

Same ol' Same ol'

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

Wednesday, February 4, 2009

Strength

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!

Tuesday, February 3, 2009

Yuck

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!

Monday, February 2, 2009

What a good day!

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.

Sunday, February 1, 2009

Looooong Weekend

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!