_____________________________________________________________________
Update Concerning
BMT: November 9, 2009
Hi,
I am sending
out this blanket email to try to keep all of you updated on current events
concerning my bone marrow transplant (BMT). If I miss someone (i.e. someone
asks you concerning my situation), please feel free to forward this along. I will try to keep up with weekly
emails.
The first week
has been successful. I had the
first dose of chemo (four days) and am now in the "nearly isolated"
waiting period while they wait mobilization of my stem cells. Once this occurs (which coincides with
my immune system dropping), they will collect the stem cells and start the
second batch of chemo. In a few
days, I will have stem cells collected, go into total isolation, and then the
massive dosage of chemo. Then ...
reintroduce the stem cells and hope they catch!
Spirits are high; fatigue is high; lots of supportive
emails, etc., to me and to Alison (all very much appreciated). Both the family and I are weathering it
well (as well as expected) and appreciate the expression of concern.
I apologize if I cannot respond to every email individually
(trying to do so though) - but do know that my family and I appreciate your
concern and all the offers of assistance and support.
I look forward to being healthy again! :)
Cheers,
Mike
_____________________________________________________________________
Update Concerning BMT
– Number 2: November 17, 2009
Dear All -
I have now made
it through week two and am starting into week three. Week two was spent on the following activities: lots of
medications for stem cell stimulation and mobilization, lots of different
rounds of various anti- viral/biotic/fungal medications, daily monitoring and
medication to combat renal issues (massive edema), and various daily physical
checks of my heart, lungs and stomach.
By the
conclusion of the week I was on bladder catheterization due to bleeding and
clots, and an NG (nasogastric) tube due to esophageal bleeding. I had both CAT scans and my stem cell
collection port in my neck placed.
A good part of
my week was spent being neutropenic (having no immune system) and hence not
being allowed to exit my room. I
spent most of my week utterly wiped out.
I am now in
week three. I apologize for the one delay on an update. The physicians decided to (a) have an
endoscopy done to monitor the esophageal bleeding, and (b) they decided to
start stem cell collection last night.
Spirits are
reasonable (given the trials of the week). The family spirits are probably a little better than mine,
but things are looking up.
I apologize if
I cannot respond to every email individually (no reasonable way to do so) - but
do know that my family and I appreciate your concern and all the offers of
assistance and support.
Cheers,
Mike
_____________________________________________________________________
Update Concerning BMT
– Number 3: November 23, 2009
Dear All -
I have now made
it through week three and am starting into week four.
The good news
so far: catheter (bladder problem)
and NG tube (stomach problem) seem to be resolving. Both have been removed. I started eating solid food again
yesterday (and it will certainly take some getting used to eating again --
especially hospital food). They successfully harvested my stem cells last
week. They only needed two
days and were able to get 30 million stem cells (the target is to collect 20
million).
The frustrating
news is that due to protein loss in the urine they are having a hard time
managing my water retention. My
weight fluctuates greatly as I retain water in my legs. Hopefully they will resolve this soon.
The current
plan is to have pre-transplant tests today (Mon) through Wed. I will meet with Dr. Tricot (my
oncologist) on Wed morning, and will start the heavy dose chemo on Thurs
(ironic -- on American Thanksgiving).
I will have four days of chemo (Thurs-Sun), and then re-inject the stem
cells on Monday of next week.
Then it is merely a waiting game to see how long it takes for my body to
repopulate the bone marrow. They
are saying that I may be allowed to leave the hospital by 17 Dec (or sometime
close to Christmas).
I am tired of being
in the hospital, but it is good to know that I am half way through this
process. They family is holding up
reasonably well, although the children keep asking when dad will come
home. Just a little bit longer ...
Cheers,
Mike
_____________________________________________________________________
Update Concerning BMT
– Number 4: November 30, 2009
Dear All -
I have now made
it through week four and am starting into week five.
This past week
I received my two major doses of chemo - on Thurs and on Sunday. Today (Mon) is Day 0 -- Transplant
Day. I will receive my own stem
cells back.
Engrafting
(stem cells starting to produce new bone marrow) should take 10-14 days (then I
might have a chance of going home).
In general, it
has been a good week. My strength
is up. The doctors warn me that
this next week (especially toward the end of the week) will be the harsh week
as the chemo will take full effect.
I will have no immune system again for several days. Then, hopefully next week, it will pull
out again.
Thanks to all
for the prayers and supportive emails.
Cheers,
Mike
_____________________________________________________________________
Update Concerning BMT
– Number 5: December 7, 2009
Dear All -
I have now made
it through week five and am starting into week six.
This past week
saw the high point of feeling great (Mon-Wed) and the low point of feeling
miserable (Thurs-now). My
white cell count has gone to zero now for over three days. I am receiving platelets and red blood
cells daily or every other day to compensate for now bone marrow. I am suffering from GI bleeding due to
the chemo (just as with the last round).
So far, they think they have it under control. We now are just waiting for the engraftment process to
happen - when the stem cells start generating new bone marrow. This will probably happen over the next
few days. Until then, it is an
uphill fight.
Family is doing
fine; mother-in-law is visiting which has helped out tremendously. Alison is getting caught up on
things.
Thank you for
your prayers and emails of support.
Cheers,
Mike
_____________________________________________________________________
Update Concerning BMT
– Number 6: December 14, 2009
Dear All,
Where as last
week was good, this past week was miserable. They chemo caused full force abdominal bleeding (massive
amounts of blood), forcing me to the medical ICU unit for the week. During this time I could not eat,
drink, or basically move. I was NG
tubed again (three times) catheterized, and feeding tube added. They finally minimalized the bleeding
enough to send me back to a normal floor.
The good news - I am engrafted! My WBC is in the normal range. Now, if they can be confident that the
bleeding is done, that all fevers are gone, that I can eat, and that I am
mobile (I currently have 200lbs of weight - 40 lbs of water), then I might get
to go home. Still hoping and
praying for home by Christmas.
With
mom-in-law still here, the family is still holding up nicely.
We appreciate
all the thoughts and prayers
Cheers,
Mike
Update Concerning BMT
– Number 7 – going home: December 19,
2009
Dear All,
I have
received permission to go home!
There is still a lot of healing and recovery ahead, but the doctors feel
that it can be done at home as well as at the hospital.
I will be home-bound
for quite a while (other than visiting the doctor three times a week or so),
but it will be nice to be home.
Thanks for all
the thoughts and prayers. Further
updates as things progress.
Cheers,
Mike
_____________________________________________________________________
Update Concerning BMT
– Number 8 – slowly healing:
January 21, 2010
Dear All,
It has been
nearly five weeks since I left the hospital. Many of you have emailed to enquire as to how I am doing
(thank you for your interest in my well-being), so I figured it best to send
out another update email with my progress.
I must admit,
it is difficult to see the day-to-day progress that is happening in my body as
it heals, but there is certainly a difference between when I departed the
hospital and now. The water-weight
problem is now under control (with careful monitoring), I am starting to eat
normal foods, and my strength and energy levels have increased (enough that I
can make it around the house comfortably, go on small walks outside, and drive
myself to the doctor's office).
Initial
indications based upon blood work show that the treatment has been a success. Amyloid production has gone to zero and
my body is now healing (trying to deal with the amyloid that has been deposited
over the last year).
The doctors
are telling me that they would like to do one more round of chemo sometime this
Spring. This is not because they
"missed something", but apparently studies show that the remission
rate probabilities go up drastically if you do two doses of the chemo within
six months of each other. The date
of this next treatment has not been planned yet as they want to see how well I
heal after the first treatment.
Right now my
routine is to sleep a lot, work some and exercise some. There is still lots of energy, strength
and health to regain and since it is so systemic, it will take time.
Thanks for all
the thoughts and prayers. Further
updates as things progress.
Cheers,
Mike
____________________________________________________________________
Update Concerning BMT
– Number 9 – return to the hospital for Round 2: March 3, 2010
Dear All,
As the subject
line indicates, I will be entering the hospital again sometime soon (within the
next week) for Round 2 of treatment.
This decision is not because amyloid-producing cells have been found; on
the contrary, biopsy shows no amyloid-producing or myeloma plasma cells (i.e.
the first round was successful) being present. This next round is in some sense prophylactic; current
studies show that doing a second dose of chemo and a second transplant
increases the remission rates substantially (patients going as long as several
decades in remission). The
deciding factor on timing (to do it now and not later) is that the studies
indicate that it needs to be done within six months of the original (and my
original transplant was on 1 Dec), and within the last two weeks my appetite
has returned to normal which means that I have gained some weight. This weight gain, return of some
strength, etc., were the indicators they were awaiting before deciding to
subject my body (again) to chemo and transplant.
I had
"hoped" (planned) to enter tomorrow (Thurs 3 Mar), but the doctor
would like to delay a few more days and has given me a one week window in which
I will enter (entering by Thurs 10 Mar).
This decision was due to the fact that I have been battling RSV (a
virus) and the oncologist would like to give my body a few more days of immuno-preparation
before subjecting me to chemo. So
- it is a waiting game. When they
call I will head to the hospital.
This next round
of chemo will not take as long as my first stay as it is only the heavy
dosing. I will do four days of
chemo drugs -- denotes days -4 to -1 (two days of specialized bone marrow
killing drug and two other days of steroids and other drugs), transplant with
approximately 13 million stem cells will be done on day 0, and then six days of
steroids and other drugs to help "guarantee" that any sleeper amyloid-producing
or myeloma cells are eradicated. I
will then stay in the hospital a couple of weeks while all the consequences of
the chemo drugs take their full effect, the body filters things out of my
system, and my stem cells start producing new bone marrow components. Once my white and red cell counts are
sufficient and stable, I will go home again to restart the healing
process.
As odd as this
sounds, I am ready to get started.
Knowing that this is the final "heavy" round, I am ready to
tackle it and then move on to full time healing and recovery. The family is about as prepared as can
be expected.
Once I get into
the hospital and things start progressing, I will keep everyone updated through
my running email blog.
Cheers,
Mike
_____________________________________________________________________
Update Concerning BMT
– Number 10 – Round 2 Chemo has started:
March 11, 2011
Dear All,
Round 2 has
started -- they are infusing the first dose of chemo now. I will have IV chemo today and Sunday,
stem cell transplant on Monday, and various meds for the next 11 days. After day 11 (a week from Sunday), I
will remain in the hospital until my white cell count returns to 500 for three
consecutive days (which means my immune system is strong enough for me to head
home).
We are as
ready as we could be for this next round -- family-wise, mentally and
physically. My parents will be
here next week to help Alison with the children, which will free her up to stay
with me on most days.
Thanks for all
the emails, thoughts and prayers.
Cheers,
Mike
_____________________________________________________________________
Update Concerning BMT – Number 11 – Waiting on engraphment: March 24, 2010
Dear All,
Round
two of chemo was done by March 14, and stem cell infusion was done on March
15. I am now in the midst of the
waiting period where you wait for the stem cells to finally engraft into the
bone marrow. The white cell count
has gone up, so this seems to be happening.
Day +6
was Sunday so today (wed) is day +9.
Day +10 - Day + 14 is the normal engraftment period and then I get to go
home, so I may be home by as early as the weekend, or early next week. No bleeding, just lots of diarrhea and
fevers due to engraftment.
Parents
arrived just as things started (around the 17th), which freed Alison to come up
and see me. My parents will be
here until Monday March 29, so may actually get to see me return home. We will see.
All are holding up well.
Family seems to be weathering it.
Thank you for the thoughts and prayers.
FYI - correspondence will be slow this next week as I try to regain
strength pre-engraftment. They say
that engraftment helps.
Cheers,
Mike
_____________________________________________________________________
Update Concerning BMT
– Number 12 – Waiting to heal:
April 2, 2010
Dear All,
For those of
you who read the email below and presumed that I would be home by now (as I
did), well ... it did not happen.
Somewhere around Day 11 I started having massive lower bowel problems. They moved me to ICU in case it were due
to infectious disease (like C-diff , a common colon bacterial bug people get in
the hospital).
Several days
in ICU they decided that all of this was merely the impact of the second round
of chemo. It had impacted my gut
differently than round 1. So I
moved back to BMT a few days ago.
They are now trying to deal with the colon issues and swelling (due to
excess fluid) before they will let me go home. The current plan is probably to be home sometime next week if
things resolve in good order.
Parents were here for 10 days, which allowed Alison to visit
frequently. The children loved
having grandparents around.
Alison's mum's sister arrives today to help out for a
week. This will hopefully bridge
the gap of my coming home.
All are holding up well. Family seems to be weathering it. Thank you for the thoughts and prayers.
Cheers,
Mike
____________________________________________________________________
Update Concerning BMT
– Number 13 – Unexpected Infection: April 7, 2010
Dear All,
The
hospitalization saga continues ... just when I thought that I might be allowed to head home I
started spiking fevers of 40C!
They determined that my port (the second port that I have had placed)
had become infected and that my body was fighting the infection. No home-bound for me! They need me to be non feverous two
days in a row before they will let me go home, so I might just be here a
while. They took the port out
yesterday and now have me on strong antibiotics to help my body fight off the
infection. The "good"
news in this is that my body has sufficient white cells to put up a fight (a
good sign that engraftment went well).
Alison's aunt
from Toronto has been here all week which has helped out a lot. Alison can leave the children with her
and come up to visit me.
All are
holding up well. Family seems to
be weathering it. Thank you for
the thoughts and prayers.
Cheers,
Mike
__________________________________________________________________
Update Concerning BMT
– Number 14 – Finally Home: April 14, 2010
Dear All,
I finally
received the OK to go home today!
I am now at home starting my recovery. My next appointment at Huntsman is Monday to do blood work
and to see how I am doing.
It is nice to
finally have exited the hospital.
It was a long stay.
Thank you for
all the thoughts and prayers.
Cheers,
Mike
__________________________________________________________________
Update Concerning BMT
– Number 15 – Hospitalized: May 23, 2010
Dear All,
Although I
have been out of the hospital for five weeks, the progress has been very
slow. I had a sinus infection set-back,
electrolyte imbalance imbalance issue, and now am dealing with severe bowel
problems. They do not yet know the
cause of the bowel problems -- whether it is infection (bacterial/fungus) or
merely chemo generated. What they
do know is that they have to get this under control as it is making my blood acidic, which can cause a slew
of other problems.
So ...because
of the risk of heart attack.. they admitted me last night. They are hydrating and medicating me
today, and will do a colonoscopy tomorrow.
Hopefully this
will be a short stay, but any stay is depressing.
Family is
holding up quite well.
Thank you for
you thoughts and prayers.
Cheers,
Mike
_____________________________________________________________________
Update Concerning BMT
– Number 16 – Hospitalized: May 25, 2010
Dear All,
As a quick
update, they allowed me to come home today. Things are not fully resolved, but my levels are stable
enough so they said that we could medicate me just as well here at home as in
the hospital.
Not much has
changed but at least I can be with my family and sleep in my own bed.
Thank you for
you thoughts and prayers
Cheers,
Mike
_____________________________________________________________________
Update Concerning BMT
– Number 17 – Hospitalized Again: May 30, 2010
Dear All,
Just to let
you know, I landed back in the hospital.
The digestive issues are not getting any better and my weight is down to
118lbs. They would like to try to
scientifically ferret out the cause of this recent issue so that I can go home
and start gaining weight (and muscle).
Family is handling
all of this well. School will be
out soon -- summer begins.
Hopefully this will allow Alison to use the community pool to keep the
children distracted.
I will let you
know what we learn.
Thank you for
your thoughts and prayers.
Cheers,
Mike
____________________________________________________________________
Update Concerning BMT
– Number 17 [sic] – Hospitalized Again: July 4, 2010
Dear All,
I have finally
returned home. Even though I am
not eating yet and am on fluid restrictions (750ml), the doctor felt that I
could continue my healing at home.
I will still have to keep up with TPN (IV nutrition) at night, but
hopefully the healing will continue!
The doctor is
still stressing that this is all due to chemotoxicity and that I need to show
patience and just wait it out.
Eventually they say my gut will heal.
The children
were very excited that I was home.
I will
let you know how the healing goes.
Hopefully soon but it looks like I have to get ready for the long-haul.
Thanks for
your thoughts and prayers.
Cheers,
Mike
____________________________________________________________________
Update Concerning BMT
– Number 18 – Remission: July 21,
2010
Dear All,
As you know, I
have been home from the hospital since July 5th. It has been nice to be home!
Last week I
completed a battery of tests designed to determine what my status is
physically. I discussed the
results with my oncologist yesterday.
The good news -- I am in total remission! There are no signs of cancer cells! The oncologist is very pleased (as am
I). My different systems are
starting to show signs of healing (kidney, heart and gut) -- slowly but
steadily. He does not know how
long it will take for the gut to heal so that I can eat again, but once it
happens, I should be able to accelerate my progress even further.
I am still
required to work from home instead of heading out to the office. Working continues to provide
stimulation for my mind while my body is trying to catch up on things. The university has been very
accommodating with my situation (both at the administration level and the
individual faculty level) in allowing me to work from home. I really appreciate this.
The goals now
are to try slowly to introduce food to my system (a process that will take
weeks of trial and error possibly) and slowly try to get more and more physical
activity. I just have to be
careful not to overdue any particular thing (food, work, exercise, etc) lest I
be set back in my forward progress toward healing.
Thanks for your thoughts and prayers. The support through this time has been
outstanding and very much appreciated.
Cheers,
Mike
____________________________________________________________________
Update Concerning BMT
– Number 19 – Hospitalization: August
18, 2010
Dear All,
Just to let
people know - I have been hospitalized again for excessive water weight
imbalance (due to low blood albumin levels). The doctors feel that a short stay with IV medications given
frequently should clear this up rapidly.
They believe the start of all of this was the bacterial infection that I
was fighting earlier in the week last week.
Hopefully just
a few days (home by the weekend, if all goes well), but wanted to keep you all
informed. Thanks for the thoughts
and prayers. Progress has been,
for the most part, positive. There
will just be there little hick-ups I have to deal with along the way as I make
it to full recovery.
Thanks,
Mike
____________________________________________________________________
Re: What’s up?:
August 18, 2010 (email to Chris Johnson)
Hi Chris,
Yes, I have landed myself back in the hospital. The viral/bacterial infection that I
have been fighting (and winning) through off my water management. Over the last two weeks I managed to
gain 20 lbs in water weight. I
thought (as did the oncologist) that this could be managed from home, but the
cardiologists (after consultation last night) said that it was best to get in
the hospital for a few days and get this off before it causes problems.
We may still be able to meet tomorrow afternoon. It would just have to be in my hospital
room (4120 -- CMVU 4th
floor). So far I "feel"
OK other than all the pains and frustrations that come due to increased water
retention. Hopefully this is only
a minor setback and that I am home by the weekend.
Cheers,
Mike
________________________________________________________________________
Update Concerning BMT
– Number 20 – Back Home: August
20, 2010
Dear All -
Just to let
people know - I was discharged from the hospital this evening. The doctors were able to get the water
weight issue under control (will still be dealing with it at home, but they
were able to turn the tide on the weight gain) and to wrap up things w.r.t. the
infections that I was battling. It
is nice to be home for the weekend.
Thanks for the thoughts and prayers.
Cheers,
Mike
________________________________________________________________________
Update on my return:
December 23, 2010 (sent to
profs@cs)
Hi -
As I believe
all of you know - this past year has been quite a trial for me physically as I
have had to deal with cancer treatments at Huntsman. I have successfully had two rounds of major chemotherapy
followed by bone marrow transplants.
As of now, I am in remission and am starting the slow but steady climb
back to normalcy.
First let me
say thank you to all of you for your supportive emails and visits. I have missed interacting with fellow
faculty members. Secondly, as some of you have noticed, I am "back"
on campus. I will be teaching next
semester (the graduate course in high-performance computing and
parallelization), and plan to start attending more and more faculty functions
in person (as my oncologist will allow me to do so). I look forward to catching up with you all as the spring
progresses.
I wish you all
Happy Holidays. I certainly look
forward to a more positive 2011!
Thanks,
Mike
____________________________________________________________________
BMT Update: August
12, 2011
HI -
Many of you
have enquired as to how I am doing now one year out from my bone marrow
transplant ordeal. The report is
good. I am in remission, have
regained a solid (healthy) amount of weight and am back to being reasonably
active.
Starting this
past week, I began one more round of chemo (considered 'maintenance' chemo)
which consists of IV chemo twice a week every other week plus oral chemo every
day, for one year (52 weeks total).
This is not due to any acute issue, but merely to attempt to (statistically)
increase my chances of successful remission.
If all goes
well, the impact of this one-year round will be mild (and controllable with
dedication on my part). So far, it
has not inhibited me from working or spending time with family and friends
(unlike last year's transplant issues). So, I will keep moving along and adjust my schedule as
needed to accommodate any physiological issues that might arise. Then, hopefully, this stage of my
adventure is over and I can get back to full-time (healthy) living!
I have started
to travel some again and have had the opportunity to meet up with many of you
in person. It was great to get
back into the swing of things.
Hopefully my restricted flight arrangement (currently six weeks as of
last week) will end on time and I will be able to visit some of you in the fall
and spring (at your universities or at conferences).
A special
thanks to my family, my colleagues here at the U (faculty, Dean Brown,
Department Heads Berzins and Davis, SCI Director Johnson and VP Dave Pershing),
and my friends for their supportive comments, prayers, and thoughts. They have certainly been an
encouragement both to me and my during this time.
I look forward
to a successful academic year (starting week after next). 2011 has certainly
turned out better than 2010. I am
now even looking forward to 2012 and beyond! :)
Thanks again,
Mike
_____________________________________________________________________
Chemo Decision:
January 23, 2012
Hi -
I have met
with Tricot today. All of the
tests done last week while I was hospitalized indicate that I am still in
remission. We have decided,
however, to discontinue maintenance chemotherapy because the risk to benefit
ration is too high. The reason for
doing maintenance chemo was because studies have shown increased remission
rates when taken for one year.
There is not significant data to indicate what benefit there is from a
partial round of chemo (in my case, five of 12 cycles). However, during my five cycles I have
been hospitalized twice for "life-threating" infections. Seven more cycles would probably
involve several more such hospitalizations as the chemo greatly reduces my
immune system, and my organs are already impacted due to the presence of amyloid
and hence do not recover as quickly as what is seen in other
"healthy" multiple myeloma patients. Although my organs have been willing to come back to
some functioning form after my last two hospitalizations, Tricot pointed out
that there is a risk that during another episode of this form, my kidneys or
gut may not return to its current (functioning) state. He said that this risk is not worth the
unquantifiable benefit of continuing with the maintenance chemotherapy.
Over the next
month I will work with my nephrologist to try to get my diuretic doses adjusted
properly so that hopefully I will have reasonable kidney function given last
week's hospitalization for dehydration and kidney failure. I lost 10 lbs over the past week due to
not eating, but are currently retaining 10 lbs of water weight due to kidney
issues. Hopefully I can get this
resolved over the next few weeks with the help of the nephrologist.
Once this minor
issue is resolved, I will finally be on a road to recovery that does not
involve any more chemotherapy, but rather only trying to regain strength and
stamina (and undue the ancillary impacts of the chemo drugs that have been used
on me). I will be monitored every
couple of months to make sure that I remain in remission.
A new phase in
the journey has (finally) started.
Cheers,
Mike
