Latest News for the Month of
March 2009
I was asked by several people as to how
things went in Seattle so I thought I would provide this update here.
Some of you probably didn't know I snuck out of
town. :)
I flew to Seattle last week and seen my lead
oncologist at the Seattle Cancer Center affectionately known as the Hutch.
They are rated as the number one stem cell transplant center in the world
for diseases such as mine and I was extremely lucky to have gotten Dr. Deeg
as my primary Oncologist. Known as one of the world leaders in stem cell
transplants, he is in heavy demand and people from around the world come to
see him and thankfully he accepted me as a patient and took my case 4 years
ago.
The Hutch is like no other hospital you have
ever seen. It is small as compared to some medical centers as their entire
focus is on leukemia type diseases as well as some cancers. Every staff
member you meet has an overabundance of compassion and patience. I have yet
to meet a rude or impatient staff member as each one goes well out of their
way to make you feel comfortable and to help eliminate your fears.
As you can imagine, the waiting rooms and lounge
areas are filled with some very sick patients. Some will never see summer
and others will have some serious battles to maintain any resemblance of
life. Because so many are transplant patients and / or have impaired immune
systems, germs are dealt with in a very strict manner. I had previously (
two weeks before my trip ) had a cold and was gloved and masked and placed
in isolation throughout my visit. Their sterile techniques is one of the
reasons why they have the best success rate of any transplant center in the
world. So my playing my part in helping was no biggie.
My meeting with Dr. Deeg lasted an hour and a
half during which time he drew explanations on the blackboard and discussed
a possible transplant. Interestingly they record the entire meeting and then
present you with the tape afterwards for your records. It sure helps as
Ingrid and I just went back and reviewed the meeting. I had forgot much of
what was said. He had taken my last four years of records home with him the
night before and was knowledgeable and up to date on my case when I arrived.
It was his feeling that it was too early in my disease for a transplant and
that while there was compelling reasons for one, the risks far outweighed
the need for one at this time. With bone marrow / stem cell transplants they
either cure you or it kills you. There is no in between. So he was not
comfortable with transplanting me at this time but it will remain an option
in the future.
He is going to be monitoring my progress
carefully and if my bone marrow begins to fail again like before then I will
have to head back to Seattle and we can discuss the transplant issue then.
With my disease you have a much better chance of survival if you are
transplanted early in the transformation phase ( its called Myeloid
Fibrosis ). Luckily I have been on a chemo regimen of Interferon Alpha 2a
since diagnosis back in 1999 and it has controlled my disease pretty well.
This drug once transformed me back into my original disease when my bone
marrow failed in 2003. There is a very high risk though that the day may
come where it no longer works or my body can on longer handle to toxic
effects and it is at that time where either experimental drugs are used or a
full blown transplant will take place. These
drugs are being cautiously watched as the last drug used with my disease was
causing patients to transform into lymphoma. It is a very delicate dance
sometimes and any new drug introduction can turn one stem cell switch off
and turn on a nastier one in its place. Many patients have transformed into
full blown leukemia's with a few of these drugs and lost their battles
quickly so I have refused all drug trials and experimental drugs to date.
They did do another bone marrow study to see
where I am at and he was confident it would show I have some fibrosis or
better known as scar tissue of the marrow. His biggest concern
was the continual strokes I am having. To date I have had 13 mini strokes
and 3 full strokes, despite being on blood thinners. I will take the blame
for some of these as I was not watching my clotting factors carefully
through routine blood tests. I am sure also that the fibrosis is being
caused by my extremely energetic marrow. To date and since 1999 I have had
over 125 phlebotomies which is amazingly high for patients such as me. It
figures I would be the weird one and get a horrific case of this disease.
But thankfully Ingrid is now trained and does all of the phlebotomies on me
at home. Because of my compromised immune system my family Doctor was never
crazy about me going near a hospital unless I absolutely had to.
The game plan is to continue treatment through
the use of the Interferon and use massive doses of it. For some reason my
bone marrow will not respond to small or normal doses and I require 3 - 5
times the normal dose. I am glad I get a response and it controls my disease
but I am NOT happy at having to use such large doses. Ingrid can attest to
the fact that it makes me sicker then a dog and gives you the chemo flu
after each injection which is 5 days a week. It's extremely toxic and plays
hell on my liver and kidneys as well as causing some brain issues such as
confusion at times. It also gives you gout like symptoms in the joints and
causes excruciating pain inside the large bones ( legs, breastbone and arms
). I could never begin to explain just how nasty this drug is when taken in
large doses and the hell patients go through while using it, But by gosh it
works and has kept me alive for 10 years so I am grateful.
I think the game plan laid out by Dr. Deeg is
sound and with the use of the Interferon I hopefully will be able to control
this disease for a couple more years. But he did state that I could start a
downturn at any time and go downhill quickly if it stops working. I run the
risk of the marrow no longer responding in the future at which time we will
look at some of the experimental drugs or if warranted go for a full blown
transplant.
Until then I am going to try not to worry, get
back on the chemo and then raise some hell and enjoy life. I have never been
one to lay down and give up on anything. I refuse to whine, cry and feel
sorry for myself and I do not want any of you to do this either. It is
counterproductive and does no good. Things are what they are and you deal
with the cards that are dealt to you. You do not waste the precious days of
your life crying over how you wished it was different. I plan on getting on
with life and extracting every single ounce of fun from life that I can. If
the Grim reaper knocks on my door in the future, I wish him the best of
luck. If you want to take a Marine down you better bring a BIG army. I
refuse to go easily and without a fight. :)
I also cannot forget that they gave me 5 years
when first diagnosed and it was thought I had 2 years left in 2003. Next
month I celebrate my 10 year anniversary from when I was diagnosed and I am
still kicking and harassing people on a daily basis. :)
So things will continue on as they were but I
need to make a conscious effort to watch after my blood cells and clotting
factor. I have lost so much of my cognitive abilities as well as my hearing
and dexterity in my hands through these strokes. As I tell others, " I have
two brain cells left and ones waving bye - bye to the other at the moment ".
So I need to be more proactive in my routine blood tests and start having
them much more often. I am sure that Ingrid and the kids will see to that.
:)
I wanted to thank each and every one of you for
your support over the years. I cannot begin to explain just how it has
effected my battle with this horrible disease. When I have been down some of
you have been there to pick me up. When I have fallen into a dark hole, many
of you came through with words of encouragement that lifted me free from the
dark space and provided me light and hope. Sometimes it was a simple message
that reminded me that your a trusted friend. One never battles these
diseases alone and wins. Instead you battle them with others and draw from
their strength in order to maintain your fight. Your e-mails, phone calls,
prayers and support is part of the reason why I am still here today. Your
well placed harassment has also gave me the will to fight as I live for
those payback moments. :)
I just wanted to update you as well as take this
time to thank all of you for all you have done for me. As a final word this
is your warning so pay close attention - I plan on sticking around for
several more years to harass and tease all of you. You people are not going
to get rid of me easily. You may have thought my antics were
through..........sorry folks, I was just catching my breath and warming up
for another 10 years. So stand by........:)
From the bottom of my heart, thanks you for all
that you do for me. I cherish each and everyone of you.
May God Bless all of you like he has blessed me
and please do continue to pray that my fight remains strong and that I win
my daily battles.
I wanted to publicly thank my good friend Rick who lives in Seattle for all that he did for me while I was there seeing the Doctor.
He opened up his home and his heart to
me and invited me to stay with him. He took several days off work from his job
at Boeing so he could make sure I got to all of my appointments. He then looked
after me at home like a nurse would, checking on me and making sure I was OK
after my biopsy procedure. He met with the nurses and got their orders ( because
I was still coming out of anesthesia ) and then wheeled me downstairs in a
wheelchair to his car to take me home.
I could never repay him for opening up his home, his heart and giving me his
time and anything i needed for 5 days straight. Tell me this man is not an angel
sent to me by God. I am just astounded by him and his compassion for people.
I watched as he woke up every morning and made his 13 year old son Ben hot cocoa
and breakfast then drove him to school. I watched him interact with his 18 yr
old daughter Lizzie. I seen the immense amount of love this father poured out to
his kids every minute he was with them. It is no wonder that both Ben and Lizzie
also opened their hearts to me and looked after me. They surely learned from
their awesome father.
I cannot begin to explain just how fortunate I feel to have spent this time with
3 of the most awesome people you would ever want to meet. I wonder how God ever
created such great human beings who will sacrifice several days of their life
and pour out love and compassion for someone like me. I am just in awe and do
not know what else to say.
It has restored my faith in people and made me realize that there are still
awesome people in this world that you can trust with your whole being and know
everything will be fine.
Rick, Ben and Lizzie, words will never explain my deep gratitude for all you
have done for me. Be proud of the people you are because you folks are simply
awesome individuals. I cannot wait to see you again and my visit and stay with
you made me realize I now have 3 more people in my life that I can count on.
Thank you and God Bless,
Chris
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