They say don't sweat the small stuff... but sometimes the small stuff is out to get you.

I have a giant cancerous tumor in my chest and I almost get capped by a multivitamin?  Seriously?

 

Let me explain.  I arrived to get my chemo (the good stuff) and after a couple of days they then re infuse your stem cells.  I had three bags - it was two but apparently I had so many white cells in the mix they added another bag.  This would be impressive (and apparently good) except the re infusion made me a little nauseous so the extra bag was not as appreciated as might be expected.

 

I got nauseous because the preservatives that store your stem cells and white blood cells smell and taste like creamed corn while being re infused.  This apparently lasts for a few days but luckily I only smelled it during re infusion (those around me however, not so lucky).

 

Anyway, after that you start to head down the road of feeling crappy. I will admit that this process really kicked my ass (compared to the previous chemo or radiation treatments). 

Your blood counts are dropping (red blood cells which increase fatigue as they get lower, white blood cells and neutrafils which indicate your immune system, and platelets that help clot the blood) and that makes you feel worse.  This also can lead to secondary symptoms such as dryness in the throat.

 

This is where the multivitamin comes in.  They were providing a series of medicines to take orally to help while my immune system was shut down - anti biotics, anti virals, vitamin K, etc.  They also provided a horse pill that they called a multivitamin.  The thing was huge.  Anyway, I started having throat issues earlier than most and on Day 2 I choked on the multivitamin.  In fact I could not breathe.  I managed to shift it but it was still stuck in my throat and causing considerable pain. This aggravated my throat issue and I was not able to swallow. I was not able to swallow anything and so did not eat or drink for 9 days.  I hate to say it... but I may have post-pill traumatic syndrome.

 

Anyway, that is the story of how I almost got taken out by a multivitamin.  Let's just say that going forward, I will be looking for the Fred Flintstone gummy bear multivitamins.

 

Good news is I am starting to swallow again (slowly) and my blood counts made a VERY rapid recovery (platelets, white blood cells and neutrafils - red blood cells (for fatigue) will take at least 3 months to recover) so that I should be going home tomorrow.  This will include me trying to drink 2L of fluid a day and eating what I can (so far watermelon, cooked carrots, apples and applesauce and soup).

 

I look forward to seeing my kids (who I have not seen in 2 weeks) and just settling in at home.

 

More to do after this of course and no testing for a couple of months to see how I am doing but in the meantime, I will continue my dietary restrictions, see the shaman once I am feeling up to the travel, and generally try and get healthy again.  I have a ways to go to rebuild muscle and energy levels. 

 

If you want to see me, I will start seeing people again around Tuesday (I want the weekend to be family only).  While I do have an immune system and I do like visitors, lets continue the no visiting if you are sick or were recently around someone who was sick.  I will not be attending any large group events for a little while (at least a month, maybe two) so please do not take it personally. 

 

Call me if you want to visit next week.

 

All the best,

Rob

I may be down but I can still type - too bad for you!

Welcome to the town of AssKicked - population: me.

 

In keeping with the results, I will spend the next 5 minutes of the e-mail groaning.

 

I am currently neutropenic - I have no immune system (Neutralphils are 0).  I had to get an infusion of platets as I dropped below 10.  I am hovering on the edge of getting a transfusion of red blood cells (currently 79) but have remained the same for 3 days.

 

These are the bad days - I should be better in about 5 days.  Thanks for all the well wishes, and offers to visit but I am not looking for any guests until Friday at the earliest,

 

I will probably be in the hospital for the weekend and if I am lucky, I will be out by the 30th or so.

 

The nurses and staff and the patients for that matter are all great.  The only issues are that you get poked and prodded constantly when you are asleep so to get 3 - 4 straight hours is a rare and precious commodity.

 

Short and sweet as I should go puke or give blood or something.

 

All the best,

Rob

Stop! Hospital time! Do, do, da do

Short and sweet.

I was admitted to PMH yesterday to start my stem cell transfer.  I am on the 15th floor, in room 728.

Guests are limited to 2 at a time so...

Let me know when you are coming if you want to visit.

Let me know if there are going to be more than 2 of you (there are lounges we can go to - but not in the room with that many guests).

Do not come if you are sick, are maybe starting to feel sick, think you could be sick, were exposed to someone who was sick etc.  I do like guests but not only is my immune system compromised but so is my 70 year old roommates so I do not want him or I to get ill.

One final thought - apparently doctors do not appreciate it if you self medicate. 

I got a friend to give me a script for an antibiotic on the 26th of December as I was getting sick and I know that they are proactive about ensuring it is nothing serious when you are in my situation.  While this was the right call, apparently not going through proper channels was a no-no.  Handslap number one.

I was then told off for stopping my Fragmin (low dose blood thinner) despite it being the requisite number of months because I just did not renew my script.  Yes, I was going to have to go off the meds when I was in the hospital but the 2 weeks that I was off prior to that I should have been on (supposedly).  Handslap number two.

So... tell your doctors EVERYTHING that is bothering you or strange or different, do not self medicate (even if you are right), do not poke the doctor bear with alternative medicines (do them, but do not flaunt it).

Cheers,

Rob

Tumor meltdown vs. CDN Juniors meltdown - which is bigger

He's baaaaccckkk....

Okay, I have an update and since we all need something to take our minds off of yesterday's Canadian Junior meltdown here we go.

Saw the doctor on Wednesday and here is what we found out.  The CT scan shows that the tumor is smaller.  How much smaller you ask?  Great question.  I asked the same thing and was told... smaller.  They did not measure it so they do not know how much smaller.

Why do I get a picture in my head of the doctor holding the scan further and further from his face and saying... "looks like the tumor is getting smaller to me".  If he gets someone to hold the scan on the other side of the room, the tumor might practically be gone.

Regardless, the smaller size is a plus.  Now is this due to the radiation?  Or due to the Shaman (healer, quack or other term you prefer)?  I have to say that giving any credence to the success of the shrinkage to the Shaman went over like a tonne of bricks down at PMH.  Man, a lot of Western doctors do not have a sense of humor about this stuff.

The Shaman is, of course, ecstatic as he had stated prior to the scan that the tumor had shrunk and now he has proof.  The Shaman has stepped up his healing/energy transfer and almost made me pass out.  I must be storing a lot of bad energy because it seriously is taking a lot out of me.  He was doing something to the kidneys and I could feel the heat transfer and then boom, I got seriously light headed.  Take that tumor!

I also got my Hickman line put in yesterday.  Good times, good times.  Sure the 4 hour wait for my minor surgery was annoying but it did allow me to play a lot of Plants vs Zombies.  If I am the Plants and the tumor is the Zombies, the tumor is getting its ass kicked.  I am way better at this game than I am at Angry Birds or Cut the Rope.

Anyway, back to the Hickman line - this is a line that they put into your chest (and into an atrium in your heart) so that they can put in the chemo/intravenous and take out blood etc.  I have about a foot of tubes hanging out of my chest and apparently about the same inside my chest (in a vein).  Unfortunately it does not look anywhere near as cool as the CT biopsy needle to the chest looked (which looked like the sword coming out of some guy's chest in Braveheart) so I am less inclined to take a picture of it and make it my Facebook profile photo. 

Having the Hickman line means that I could end up in the hospital at anytime.  Chances are I will be in early next week.  It will be one day of fluids, two days of chemo, a couple days of recovery and then stem cell transfer.  First week will probably not be pleasant.  Two weeks of recovery and then home for further recovery.  Healthy visitors are welcome anytime but note that they are big on hand washing so expect that this will be mandatory.  I will be at PMH, probably on the 15th floor.

Last thing - I had a great surprise tonight.  My buddy Ross from Ballarat Australia showed up at my door tonight in the snowstorm.  He and his family are taking an extended vacation in Europe and he flew over from Salzberg to spend a few days with us in T.O.  Really nice unexpected surprise.  Especially since he brought some Aussie Footy paraphernalia for me from my team, Collingwood, which had just won the recent championship.  To put this in perspective, it was like a Leafs fan buying a Habs fan a championship jersey just after the Habs won the cup.  Ouch.  I know that had to hurt Ross (and Matty too, who shopped with him) so thanks a bunch!

If anyone has any suggestions for something really fun to do in Toronto for the next couple of days, feel free to drop me a line.

Otherwise, I will let you know when I am in the hospital and where I am, when I know.

One final thought - can someone explain to me why when the latest round of chemo caused a lot of hair to fall out and to stop growing, the white hairs were the first to recover?  I get sporadic facial hairs in my beard and they are ALL white.  Not only is it weird, it is annoying as I have to shave every few days just to cut these 25-30 white hairs that keep popping up.

All the best,
Rob

All I want for Xmas is high dose radiation...

Merry Christmas and Happy New Year!

2011 has to be a better year than 2010, right?  I mean, it is a bigger number.  It's not divisible by 2.  That alone makes it cooler.  In fact, 2011 is a prime number.  That has to be worth a lot.  So bam, I am already feeling better about this year.  Maybe I will win the lottery.

I mean last year I won the cancer lottery.  No really, this is not a joke (ha ha), I really won the cancer lottery.  My co-workers were very nice to purchase me a ticket in the Canadian Cancer Lottery and I won $100 in the December draw.  Of course, I did not look to see if I won until... say it with me, 2011.  So yep... this will be a good year.

Okay, so radiation is completed.  Not really a difficult thing to endure (at least for me) in that the side effects were minimal.  Bit of a throat issue (trouble swallowing) and some fatigue but the biggest pain was getting to the hospital daily.  Big thanks to all those who were volunteer drivers.  Avoiding parking and all that entails was a great help.

Just in case you were thinking about going for some radiation in the mantle area (maybe you have this on your bucket list, I don't know) - here is what you need to know. 

• The tattoos are kind of lame.  I could claim that I got the entire world tattooed on my chest 4 times or I have 400 angels dancing on the head of 4 pins but it really kind of looks like 4 blue dots.  Probably not going to impress my prison friends.
• Scuba diving is good practice as you have to breathe through a snorkel (seriously) and you have to hold your breath, not pearl diving hold your breath, but at least a minute helps.
• Other than that you just sort of lie there (perfectly still without moving) for about 15-20 minutes depending on if the computer crashes.  Based on my experience, 5 crashes in 20 sessions, I now know where all the old Commodore 64's got to.
• Bonus is you are allowed to bring in your own music to play while you are lying there.  Apparently the ska/punk combination was a bit of a novelty in the radiation ward.  I was told that they have a lot of Indigo Girls folk type music, mellow melancholy tunes or Tom Jones.  Yes, Tom Jones is not unusual to be played by everyone... dadadada... sing it with me.

As I said, that was about it.  Not a ton to tell other than the radiation is supposed to continue to work for another few weeks even though my last session was on the 28th.

In other news, I have added to the classic Western Medicine approach of chemo (as let's face it, they were not having a good year - 0 fer in the killing the Cancer department) with a "healer".  Okay, bio-rhythm guy.  See sidebar on this below and how he has convinced me to change my diet:

Sidebar:
For those who do not know, I went to see an "energy healer".  You may say Quack if you want.  One of Claud's friend's swears by him and he was pretty good at diagnosing what my issues were and where they were.

He noted that I had lower back issues (this has flared up again only recently), that I had blood problems (he saw my bald head but went with this rather than just any cancer - so score one for him on the blood cancer angle), he asked if I was constipated (again, not usually an issue but happened to be one that day - sorry if I am sharing too much), and about my left hip (this is not a problem as far as I know but it is where they did the bone marrow biopsy... we will call this a miss at this point).

I will give him 3 of 4.  He noted that the cancer was in the chest - not a bad guess although he was a little left of the site as far as I know.  I think his knowledge was pretty good and you can "feel" some form of heat or energy transfer from his hands while he treats you.  I do give him some props - during one session I actually felt weak and spent.

Anyway, since I am open to alternative therapies at this point and since I do believe that some people have "gifts" in things like charisma, it is not a huge stretch to healing.  So... I am going with it at least until the cancer is gone.

Anyway, the healer has suggested I change my diet (and in a lot of ways) so now I am going to be like that annoying Vegan that you really do not want to invite to your dinner party.

No Beef or Pork - chicken, turkey, lamb, veal (less hormones I am led to understand), and especially goat are fine.  That said, less meat is probably a good thing.

No milk/dairy - exception is goat's cheese.  The goat apparently gets a free pass.  Not sure who the goat pissed off.

No sugar.  Yikes, I should be pleasant to be around.

No caffeine - fine for coffee and tea, and I can live with no coke but it includes chocolate (ahhh! but this was probably included in the sugar).

No alcohol.  Whatever.  It was always funnier seeing you all hammered and the silly things you did anyway.

No bread or pasta.  This is getting difficult.  Apparently the KFC Double Down is the way to go.

No salt unless it is sea salt. 

What can I eat:

Lots and lots of water and fresh veggies and fruits.  Nuts.  Seeds.  See meats above.  Rice.  Chick peas assuming they are dried and not from a can (why?  who knows?).

I also need to exercise and get more oxygen into my lungs - apparently cancer cells cannot thrive in an oxygenated environment.

Anyway, long story short, I am going to try and adjust my diet... good luck, I know.  I will try and focus on the no beef, no pork, no dairy, no sugar, and limit breads and pastas as much as possible.  I should have no problem with this when I go back to work (mmmm... Craft Burger).

This was a little longer than I expected so I will leave off here...

Cheers,
Rob