Let it grow, let it grow, let it be white as snow.

A sort of quick update - my hair (facial, top of head etc) is starting to grow back after taking a 2 month hiatus.  Eyebrows are still pretty thin and leg hair is quite patchy.  All in all it looks pretty funny so getting hair growth back is probably pretty good but I must admit I will miss not having to shave.  The beard has taken a turn and has a LOT of white hair.  Very salt and peppery - I would give Hodgy a good run for his money.  Hopefully that is not the case with the top of the head.  I guess we will find out but the hair on top will remain shaved until it is coming in thick enough to look normal (as opposed to a commercial for the Hair Club for Men or that stuff you spray on top of your head) and then we will see what I end up with. 

Should have some serious results in the next few days - I had a CT scan that showed the tumor is about 3cm by 3cm.  This could be dead tissue and is not considered a major issue by the docs.  I had a PET scan on Friday that will let us know if there is any activity that we should be worried about or if I am in remission.  I got the PET scan only because I have signed up to be part of a clinical trial of a drug that is in stage 3 of testing.  The drug is supposed to increase the chances of staying in remission permanently (current odds without the drug is between 20-30%).  66% chance I get the drug and 33% chance of placebo (1% chance the Leafs make the playoffs).  I only qualify for the study if I am in remission so a lot hinges on the PET scan results.

Heart and lung tests show normal results although not as good as prior to the radiation and stem cell transfer.  This just goes to show that there is still a ways to go until I fully recover.

I had promised some preaching with the next update so here it is.

What is important in your life?  What are the priorities?  Do you try and maximize your time with the priorities and most important things?

I have spent a lot of time in touch with a friend from Queen's who is living in Tokyo.  He was in a building during the earthquake and he said it was swaying 20-30 feet for about 2 minutes.  Luckily it was Japan and they are obsessed with building structures that can survive tremors (apparently even big ones).  He got his family out of Tokyo as soon as possible but he stayed because he had responsibilities at work.  A couple of days later when things at the nuke plant were looking grim he finally got out.

Why do I bring this up?  Because you never know when the earthquake, tsunami or illness might hit and then it could be too late.  Nobody ever says "I wish I had spent more time doing things that weren't that important to me in the grand scheme of things".  Although Chandler may have wished to spend more time with his Weenus.

Also, there are times when we have responsibilities and these are important as well - we have to juggle these with the life priorities... but do not lose sight of what is MOST important.  For the people from Queen's, that probably involves drinkng.

And of course, I would still love to get updates as to what is happening with you.  Seriously.  I am fully versed on what is happening with me so it would be a nice distraction to read about someone else for a change.

Cheers,
Rob

Things to test border crossing security

It has been awhile and a bunch has happened so I thought I would send out an update.

 

Last I updated I was looking to get out of the hospital and get home.  I cannot stress how much I appreciated getting home and seeing my kids who I had not seen in 17 days.  I had been very fortunate that Claudine was able to visit me everyday in the hospital and spend so much time with me but it was so nice to be home.  PMH can be a little depressing - the people are great (doctors, nurses, other patients) but knowing that everyone being treated there has cancer can get depressing.  Thanks to all the friends and family that managed to stop by (and to those who wanted to come but were told no during that time I was not able to deal with extra visitors).

 

Anyway, getting home was a plus and I was starting to feel stronger and was getting around and going out of the house.  Unfortunately I seemed to get sick about a week into being at home.  This completely weakened me and left me bedridden for several days.  The doctors were concerned and worried that I was getting dehydrated so this meant that I was put back on fluids (a nurse would come in daily to give me an IV drip of 1L of fluid over two hours).  That meant I was having 2L to drink and 1L in fluids for over 3L per day.  Talk about the need to pee!  I am finally off the fluids but am still having to drink over 2L of fluids (water) each day... how much are you drinking?

 

Anyway, after 13 days of this sickness (no fever, no elevated white blood counts, lots of coughing, and coughing up yellowy phlegm) they then determined that I might be at risk for pneumonia and put me on anti-biotics. 

 

A few days later Riley and Maddie got ill with a virus that had them coughing and vomiting and later something else that had them dealing with issues at the other end.  I got shipped off to my parents in order to try and avoid getting this illness or illneses.  The ban ended up lasting 10 days (thanks Mom and Dad for allowing me back... I guess I am never to old to move back home).  Through some miracle, Claudine managed to stay healthy during this despite nursing two very sick children (and prior to that one needy adult).

 

Meanwhile I am still going to appoitments (seeing the Shaman, my doctors etc) but the anti-biotics do not seem to be doing a tonne to make me healthier although I am slowly getting stronger again and am no longer spending most of the day in bed... I had finally graduated to the couch.  At one of my appointments the doctors determined that I had actually contracted Radiation Pneumonitis.  This has similar characteristics to pneumonia (minus the usual fever) and can occur when you have radiation treatment to the mantle area such as I had.  It typically takes between 1 and 3 months after treatment to manifest itself and occurs in 5-15% of cases.

 

I am not sure if I should be annoyed that it took the docs 27 days to figure this out or if I should be happy that I am starting to show a propensity to land on the rarer side of the odds (something that I hope will continue on in the future in my upcoming tests).

 

Anyway... it has now been 34 days with the Radiation Pneumonitis and it is getting better on its own (typically steroids are prescribed but the docs have been trying to avoid that and since they tend to really wire me, I am willing to bear with it for a bit longer).  I am not coughing up much phlegm anymore and the coughing is getting rarer with the exception of during my pulmonary test.  Pulmonary testing involves breathing into tubes and taking in big breathes and then exhaling everything until your lungs are empty.  This is tough and really agitated my lungs and caused a lot of coughing.  Based on the test I am not sure that the lung capacity is up to snuff so it does not look like I will be able to be back in the lineup should the Leafs manage to make the playoffs.  :)

 

Speaking of tests, today saw me participate in one heart test (MUGA) and a CT scan.  For both these tests there is contrast dye or nuclear materials used in order to help light up and reveal data for the scans.  What is interesting about this, other than the lead lined needles they use, is that if I were to try and cross the US border now or anytime in the next few days, they would be able to see me coming from over 5 km away.  Apparently I would really light up and the border is able to detect these sorts of things.  Luckily I am not heading to the US for awhile so I should be able to avoid the no fly list.

 

Up next test wise is another heart test (the heart tests and pulmonary tests are used to compare to my November tests to see if the radiation or stem cell transfer did any damage to my heart and lungs) and then the PET scan.  The PET scan will show if the cancer is still active or in remission.  So I should have a good idea of what is going on in the next couple of weeks.

 

That said, regardless of the results, the treatment and recovery continues and seems to drag on.  My doctor had to write a note for Claudine to explain her absence from school (I could not get Tiffany to crib her one like I used to do in high school - sorry Mom and Dad... although I think you figured it out when you saw I had missed 24 French classes) and in so doing he stated my condition, my treatment and that I would need care and follow up for a further 6 months before being near back to normal. 

 

6 months!  Sacre bleu!  I am not sure if this extension from what I thought was 3 months is due to the Radiation Pneumonitis or if I misunderstood previously or if he is just being conservative but that puts me in August or September before being back to normal.  That is a long haul... so... am I back to work first or the NFL?  Bets can be made with your local bookie.

 

On a side note, my diet continues (no sugar, no dairy, no pork or beef) although I am allowing some small adjustments.  I have added asparagus (4 tbsp) to my morning and evening meals based on recommendations and internet survival stories.  Who knows if it works but who can say it will not.  I continue to known as crazy diet guy at the hospital as I refuse to eat all the ice cream and Ensure products they suggest.  They want to fatten me up as I am currently at 160 lbs.  As for the 160 lbs... I am now crazy fast as I have basically gotten rid of that fridge I was carrying around so look out....  For those of you scoring at home, this would give me a BMI of 20, which is considered normal, whereas prior to the disease I was at 205 lbs (of which maybe 5-10 was excess) and had a BMI of 25.6 which is in the obese category.  HA!  Those Victoria Secret models have nothing on me now!  Anyway, I found this whole BMI thing quite funny as I really look like an emaciated scarecrow at the moment (but an emaciated scarecrow that is getting stronger everyday and can totally rock a leopard print bra and thong).

 

This has gotten quite long so I will skip the preaching that I had planned and save it for the next update.  Instead I will mention this - a few people who I have not been in touch with all that much over the last few years sent me updates in what is happening with them (spouses, kids, jobs, extracurriculars etc) and I cannot say how much I appreciated hearing about it.  If you have not kept me updated on YOU in the past few months or years and can spare 10 - 15 minutes for an e-mail or a phone call to talk about yourself, I would love to hear it. 

 

After all, as much as I may think so, I cannot all be about me can it?

 

Cheers,

Rob