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
