March 27, 2014 (9 years) I have been truly blessed. My
immune system continues to improve and I only rarely get sick. I
have a very active life. My wife and I have been able to travel
because of my stable health. In the last year we have visited Peru,
Equador, Belize, London, US Virgin Islands and several states. We
are enjoying time with our three grandchildren and our five
children. Life is good!
March 21, 2011 (Almost 6 years) I am alive and feeling
better than ever! Over the past few years I have suffered from
shingles and pneumonia due to my compromised immune system. Shingles
was very painful and I had residual pain for over one year. I was
hospitalized with pneumonia for 5 days and was on medication for one
year. I continue to get stronger and currently walk 3 miles several
days per week. I am cured and no longer need to visit Mayo for
checkups! Thank you again for all the love and support I have
received. I could not have survived without it.
August 29, 2006 (1 year, 124 days) Sorry for such a long
stretch between entries, but my health has been steadily improving.
The key indicator of my recovery, my hemoglobin level, reached a new
high today of 13.3. That is considered in the "normal" range by most
standards. In many ways, I have been healed. Deb and I are assuming
a very regular life style these days and my energy level is no
longer an issue. Life is very very good!!
May 9,2006 (1 year, 12 days) My doctor from Mayo called
today with results of my bone marrow biopsy and reported there are
NO SIGNS OF MYELODYSPLASIA! That is the best news I have received
since my transplant. There is no guarantee that MDS will not return,
but my stem cells are 100% those of my donor's and they are making
good blood for me.
May 5, 2006 (1 year, 8 days) I got back last night from my
one year checkup at Mayo. They did all the usual blood tests, a bone
marrow biopsy and bone density tests. Everything went really well.
They are still waiting for the biopsy results, but my doctor does
not expect any surprises. My bones have lost a little density, but
that is expected from the prednisone steroids. I have been off
prednisone for almost two weeks now, so I will not lose any more
bone density and I am still in the normal range. My hemoglobin is
holding above 11.3, which is very good. I am still receiving a
monthly shot to help boost hemoglobin production, but the long term
effects of it usually maintain. My kidneys are still having a rough
time, but we dropped the cyclosporine level today, which should
help. I am still a risk for graft versus host disease, but with a
slow taper of cyclosporine, I should be able to avoid illness. My
doctor is very pleased with my recovery. I have been extremely tired
while coming off the prednisone. My energy level will begin to rise
over time, but probably not to my old level. I have learned to refer
to it as my “new normal”.
I also made another visit to dermatology to look at some
“suspect” skin spots. In January, I had 5 spots removed and 4 of
them proved to be basil cell cancer. The doctor said that I am
“fertile soil” for skin cancer and I should be very careful to stay
out of the sun. My transplant and post drug regimen only adds to my
susceptibility. They performed a full body scan and found so many
suspect spots (more than 10) that they did not have time to treat
them all nor did they think I could endure all of the needle pokes.
So, I am going to reschedule with them a time when they will give me
sedation and perform all the tests at once. Please use this as a
reminder to wear your SPF 30 when in the sun!
April 27, 2006 (Day 365) Happy
Birthday to me! It has been one year since my bone marrow transplant
and I am doing great! All in all, it has been one heck of a year.
Thank you all again for your support and most of all, thank you for
April 3, 2006 (Day 341) Deb
and I have returned from our second trip, a trip to visit our
daughter Megan in Cork, Ireland. We brought Andy with us since his
spring break happened to coincide with our trip. We had a wonderful
time - kissed the Blarney Stone, visited a little seaside town of
Kinsale, ate some great food and washed it down with a Guinness or
two. The weather was cool and rainy, but we knew that going to
Ireland was NOT going to be Florida. I managed to catch a cold
there, but my health has been very stable. I continue to reduce my
daily medications. I return to Mayo later this week.
March 9, 2006 (Day 316) Last
week Deb and I went to Florida to visit my dad and step-mom. It was
the first time my doctor allowed me to fly since my transplant. The
weather was in the 80's and we had great time. It felt so wonderful
to be well and on vacation!
Yesterday was spent at Mayo - my
first checkup in FIVE weeks! My hemoglobin was 11.1 - the highest
level since becoming ill. My doctor is very pleased with my progress
and I begin reducing some of my medications today, especially the
anti-rejection medication and the steroids. I do not have to return
to Mayo for another month!
February 12, 2006 (Day 295) I
have been feeling fantastic! I continue to gain more energy and feel
better by the day. I have been to a local clinic three times to have
blood tests faxed to Mayo as a precaution. But that is all the
medical attention I have had since January 27th. I can now visualize
that I could feel pretty close to normal by my 1st anniversary of my
transplant (April 27th).
January 27, 2006 (Day 275) Deb
and I returned from Mayo today after a two day visit. They kept us
very busy. My progress continues with my hemoglobin level
maintaining at 10.0 and my liver and kidney functions are a little
high, but stable. I got a "booster shot" to help my hemoglobin
production; hopefully it will have long term impact. I do not have
to return to Mayo for a month, my longest break yet! But, I will
have some quick blood tests performed near home and sent in weekly.
My doctor even ok'd plans for Deb and I to travel to Cork, Ireland
and visit Megan in March!
While at Mayo, I visited the allergy
department to see if I am allergic to shrimp (see next entry). They
tested my tolerance for cod, crab, halibut, lobster, oysters,
salmon, scallops, shrimp and tuna - all were negative. My doctor
told me that while the tests did not confirm that I am
allergic to any of the above, he has some doubts about receiving
positive test results because of two drugs I am currently taking -
cyclosporine and protonix. So, he suggests I continue to not eat
shrimp for a while.
In addition, I had
today to remove a nodular basal cell carcinoma (skin cancer). They
took quite a chunk out of my right cheek. They also removed a cancer
spot on my left arm. Two weeks ago they removed cancer spots on my
back and my stomach. A little reminder for younger readers - wear
your sun screen (or end up like me). To see a pic of my bandage on
my face, click
January 19, 2006 (Day 267) My
IV treatments finally finished on January 11th after 30 treatments.
My hemoglobin was 10.2 on January 12th - another great record! I
have had three bouts of extreme flu-like symptoms over 15 days
beginning December 27th. With the help of my daughter Kelly, I
finally realized that the common food denominator for all three
bouts was shrimp. I love shrimp, but there is a good chance that I
have a food intolerance for it. I am arranging for an allergy test
at the Mayo Clinic next week. In addition, I visited with the
dermatology department at Mayo and they discovered a couple skin
cancer spots on my face and back. I will need surgery to remove the
spot on my face next week.
December 30, 2005 (Day 247)
Happy New Year! I picked up a small virus or something the other
night and got sick a couple times, but I am doing fine now. My
hemoglobin on Wednesday was 10.0, the highest (without a blood
transfusion or drugs) since this whole ordeal began in September of
2004. My platelets and white cell counts were also up. Yippee! I
have been in a hospital every other day since November 16th
receiving antibiotic IVs for a strep infection. I have been testing
negative for the infections since November 30th, but the treatment
continues to ensure that the infections does not return.
My Mayo doctor even told Deb and I
that we should be able to visit Megan in Cork, Ireland this spring
(Megan's semester abroad). My doctor has colleagues in both Dublin
and Galway in case I need to see a doctor while there. My
improvements are outstanding. Thank you all again for your prayers
and concerns. Happy New Year - 2006 just HAS to be better!!
December 20, 2005 (Day 237) My
Mayo doctors added a second antibiotic to my regimen - Gentamicin.
Both antibiotics essentially do the same thing - reduce the
likelihood of my strep infection returning. This lengthens my time
in the hospital by a half hour or so every other day. But, I am
happy to do it to make sure this bug is gone once and for all!
Megan returned for the holidays today
and Andy returns in two days. It will be so much fun to have the
whole family around for Christmas.
December 17, 2005 (Day 234) I have had sixteen treatments
of Vancomycin IV, either at Mayo or Fairview Southdale. For each
treatment, they need to start an IV, and then I am hooked up for an
hour and a half as it is pumped in. I will get treatments every
other day until January 11th.
I continue to feel very well and my
energy is growing faster than ever. Just this week I climbed three
sets of stairs in a row. I could not have done this a month ago.
December 6, 2005 (Day 223) We
returned to Mayo to test my allergy to Penicillin. It was determined
that I am allergic to Penicillin in June, but they want to re-test
me since Penicillin is the drug of choice to fight my strep
infection. It turns out that Penicillin will not give me a skin
rash, but they cannot determine if my kidneys will be damaged from
Penicillin. So, it was decided to continue with Vancomycin.
December 5, 2005 (Day 222) My
TEE at Mayo procedure was painless. They gave me a very nice IV that
kept me conscious so they could give me instructions, but I don't
remember a thing. They determined that I have strep growth on the
strands attached to my aortic valve in my heart. The treatment
remains the same, to kill the bacteria with Vancomycin and continue
treatment every other day until January 11th.
My cultures have been negative since
November 30, so we are really just in the process of running out a
long term antibiotic to make SURE it does not return.
December 1, 2005
(Day 218) Mayo called and the scan on Wednesday was positive for
growth on a heart valve (see entry below). So a further, better scan
test has been ordered for Monday. It is called a transesophageal
echocardiogram, or TEE
See decription here. For this test, they sedate me and put a tube down my throat to
project a better picture of my heart and its valves. So, Deb and I
will be at Mayo on Monday. In the mean time, I will receive IVs at
Fairview Southdale on Friday and Sunday.
According to my doctor, the treatment
for this growth is the same I am receiving now (Vancomycin IVs), but
probably for a longer period of time. I am now scheduled to receive
IVs until December 15th, but I am guessing that they will continue
treatment until about Christmas.
November 30, 2005 (Day 217)
The infectious disease doctor at Mayo ordered an echocardiogram (an
ultrasound of my heart), to look specifically for vegetation
(growth) on my heart valves. Bacteria growth on the heart valves can
be an offshoot of a strep infection in the blood system. If not
treated, it can lead to heart valve failure and possible need for a
mechanical valve replacement.
On the happy side, my other
conditions continue to improve and Dr. Hogan reduced my
anti-rejection cyclosporine level by 25% and dropped my steroids
(prednisone) from 17.5 to 15mg daily. I continue to feel pretty good
and my strength is slowly increasing. So, we were at Mayo a little
longer than we anticipated. We got up at 5am and arrived home from
Mayo at 10pm - a long day.
November 28, 2005 (Day 215) I
have had six IV treatments to fight off my strep infection. I was
able to skip my treatment today, but will go again tomorrow. On
Wednesday it is off to Mayo for my regular check up. Deb and I will
also be meeting with an infectious disease doctor to evaluate my
strep infection treatment. Hopefully, the infection is gone and we
can move on. I am still hopeful for 30 days without any
November 24, 2005 - Thanksgiving
(Day 211) I have a lot to be thankful for today. I am alive and
feel wonderful. Andy and Megan are home for Thanksgiving and we have
have been having so much fun with the whole family. I started the
day early. While Deb put the turkey in the oven and prepared for her
family to arrive, I went to the hospital for an IV treatment. As
soon as I returned, everyone showed up for a fun day of food and
November 16, 2005 (Day 203) I
went to Fairview Southdale today for my first IV of Vancomycin, a
different antibiotic than we used last time to fight off the strep
infection. The IV takes an hour and a half to drip into my blood
stream. I feel fine, but I know the Vancomycin will be fighting a
war in my blood stream. I will need to visit the hospital every
other day until about December 1st.
November 15, 20005 (Day 202)
Well, it turns out I did not dodge another bullet as written in the
post below. They drew blood cultures yesterday at Mayo which turned
up positive this morning for streptococcus imtermedius
(strep) again! My Mayo doctor called me at home this morning and
wants me on IV antibiotics right away. I tried to make arrangements
to receive treatment at Fairview Southdale today, but my doctors at
Mayo and Fairview did not talk together on the phone until late in
the day. Looks like I will be going in tomorrow.
November 7, 20005 (Day 194)
They kept me in the hospital until they could determine the strain
of strep that infected me (see posting below). I was finally
diagnosed with streptococcus imtermedius on Saturday morning
while still in the hospital. Once diagnosed, they prescribed
Clindamycin, an antibiotic, and let me go home Saturday night. I am
home now and feeling well. I return to Mayo tomorrow for a regular
checkup. I have dodged another bullet...
November 2, 2005 (DAY 189)
Since my episode at Mayo last month, I had been doing very well.
Halloween night I went to bed feeling fine. I woke up yesterday
about 5:15am with severe chills. I woke Deb about 7am to get my
thermometer and had a temp of 103.2F. We called Mayo right away and
they said go to to a local emergency room. Deb got me to the car and
off to Fairview Southdale. I started in ER where they gave me
Tylenol, an antibiotic and saline IV. They also drew blood for tests
and cultures. My temp began to drop right away. I was admitted and a
room at 3pm and my temp was down to 98.9. My hematologist doctor
is on vacation, but one of his colleagues saw me. They believed I
had some kind of infection or a virus. They kept me in the hospital
over night. My doctor just came in and informed me that I have a
strep infection, so I will be getting some more antibiotics via IV
and will be in the hospital at least until tomorrow.
October 21. 2005 (DAY 177) Deb
and I returned home three days ago after spending an entire week in
Rochester. I had developed both staph and strep infections in my
blood system and was on antibiotics IVs to recover. My doctor called
me at 10pm at home when the blood cultures were positive for the
infections. Deb and I drove immediately to Mayo where I began my IVs
at 2:00am. In addition, I developed a skin rash at the same time.
The doctors watched me closely as I began to fight the infections.
I am doing much better now and the
rash is beginning to fade. I estimate my energy level at about 15%
of normal. I continue to watch for any symptoms of infections by
monitoring my temperature closely.
September 29, 2005 (DAY 155) It is my birthday today. While I am
considered to be 52 years old, I also see myself as being 155 days
old since my transplant. I am rejoicing in being alive! My current
condition is very good. My doctor expects a full and complete
recovery. In the meantime, I am building back my immune system and
taking many drugs to help the process. I take about 20 pills per day
plus an insulin shot. (I am a steroid-induced diabetic - this will
hopefully end when I quit taking steroids.)
While I get a few muscle cramps and
other symptoms, I am pain free - a problem that so many other sick
people have to deal with. Deb is still my constant companion and
helper through all this. I don't know what I would do without her.
We still visit my doctor at Mayo
weekly for tests and an exam. My doctor wants to keep a close eye on
me so that no symptoms of problems become larger issues. Deb and I
look forward to lessening our dependence on Mayo, but that may take
June 26 (Day 60) Deb and I have officially moved home!
We have not spent a night in Rochester since June 8th and have moved
out of our apartment. My regiment of pills, blood pressure checks,
ointments, insulin shots and blood sugar monitoring keeps Deb and I
very busy. We still drive to Mayo twice a week for blood
tests and see my doctor. Our little spare time is spent with our
kids and trying to catch up on much needed rest.
June 23 (Day 57) My rash is improving, but my blood
sugar level has been on the rise. My doctor explained that this is
another common effect of steroids. Deb and I met with a diabetes
specialist and they put me on insulin to help maintain my blood
levels and help my pancreas. This should be a temporary condition
until my rash improves and my steroids levels are lowered. So, the
king of blues, B.B King, and I have one thing in common - we both
use the same One Touch blood sugar meter (I named my meter Lucille).
June 22 (Day 56) The steroids have kicked in and the
rash seems to be improving. Back to Mayo tomorrow to check with the
doctor. Deb and I got lots of work done around the house.
June 20 (Day 54) We met with my doctor and we all
concluded that the rash is returning. This time it is doing so
without effecting my liver or kidney functions, so the doctor is
convinced that it is graft versus host disease. This is most likely
a good thing. Now we can treat it separately from other problems. My
doctor increased my dosage of steroids again and sent us home.
June 19 (Day 53) Happy Father's Day to all the the
fathers!! I am very happy to be around for this one. And I am a
lucky 51 year old to still have my father here to celebrate with.
His daily contact with me throughout my transplant process was
always an inspiration for me - I love you Dad! Time with my kids on
the lake today too. It is one of the best weather days in MN this
year! Back to Mayo tomorrow.
June 16 (Day 50) Day 100 is about when I will have a
thorough exam at Mayo to determine my full bone marrow transplant
success. Today marks my half way point to that goal. My checkup at
Mayo today was favorable, but they started me on a very low grade
blood pressure medication. Back home afterwards - next appointment
June 13 (Day 47) Monday was a long, but good day. We
arrived at Mayo in plenty of time for my blood draw at 8:30am and
saw my doctor at 2:30pm. My hemoglobin level was a little low, which
can happen during this period. So, they gave me two units of blood.
But, we still made it home by 11pm. Commuting to Mayo is a long day,
but sleeping at home makes it all worth it. Next appointment on
June 12 (Day 46) All the kids (but Andy) were around
for part of the day. I started to dread having to return to
Rochester. We decided to leave for Mayo on Monday morning to stretch
our weekend as long as we could.
June 11 (Day 45) Deb and I treated ourselves to in-home
massages in the morning. Then, Deb, Megan, Kelly and I had our first
summer lunch at Maynard's on the lake. It was raining and we ate
inside, but it really felt like home. Attending mass at our home
parish later was a real treat. I was tired from a full day. Deb was
correct in telling me to slow down.
June 10 (Day 44) Andy was out of town for the weekend,
but Amy, Ben and Megan came to the house for a barbeque. We laughed
and had fun until way past my usual bedtime. I was tired, but Deb
and I really missed the kids.
June 9 (Day 43) My blood pressure is still fluctuating
on the high side and my doctor wants a second check on it before I
can be released to go home for the weekend. Although my pressure was
still a little high, my rash has improved along with other levels.
My doctor cleared the way for Deb and I to head home for the
weekend. We packed and scrambled home by early Thursday evening.
Everything was so GREEN on the lake. Deb and I had a nice quiet
dinner on the deck and enjoyed the sunset.
June 8 (Day 42) I received lung "drug mist" treatment
today that will help my lungs fight infection for 30 days. My lungs
have been very clean, but my doctor wants to keep it that way. I
also met with my primary doctor. He is happy, but cautious about my
progress. He is watching my blood pressure closely and wants me to
stay in town until at least Thursday.
June 7 (Day 41) Met with kidney specialist again. He is
very happy with my rash progress and believes my kidneys will
improve as the rash improves.
June 6 (Day 40) My doctor is watching my liver, kidney,
blood pressure and skin rash closely. Because of the steroids and
other medications, the levels have not been very stable. On the good
side, the steroids are clearing up my rash in a quick hurry.
June 5 (Day 39) Having Andy & Megan around was great.
We went to a sports bar for dinner last night. I found out that the
steroids I am on is what is driving my appetite. It is incredible. I
am eating like a horse.
Today is Deb and my 13th wedding anniversary! I am truly
blessed to have a soul mate as wonderful as Deb.
So, we had plans to have brunch with Andy and Megan at the Marriott across the
street before they returned home. But, Megan was scheduled
to work at 11am today (waitress at outdoor pool), and so Andy and
Megan had to be on the road by 9:15am for them to make it. Unless,
of course, we new it would rain. Weather.com reported certain rain
in the afternoon based on Doppler forecast, but the morning looked
ok in Minneapolis. So, we abandoned our rainy day plan and they
headed for home. At 10:55am while Megan was one block from work,
they called her cell phone and cancelled work for the day...
My rash is healing quickly while all of my blood counts are
improving constantly. We meet with my primary doctor Monday
afternoon. We hope to hear that we will be able to to take
occasional trips home again soon.
June 4 (Day 38) My rash has already improved. My skin
has changed from like an orange peel to a lime peel overnight! The
clinic is closed on Saturdays, so they brought me into the
outpatient area today to monitor my blood tests on a daily basis. I
feel much better. Andy and Megan came down today to spend the night.
June 3 (Day 37) I had my kidney test (2 hours) in the
early morning. I showered when I got back to the apartment and felt
very faint afterwards. I saw a kidney specialist in the afternoon.
They checked my blood pressure - 80/55! I guess the ONE pill I took
for blood pressure lowering worked too well and explains my
light-headedness following my shower.
The specialist said my kidneys
are only working at about 20%. He said he believes that it may be
because of the rash, in effect, spreading to the kidneys. Or it may
be by me receiving both penicillin and another antibiotic at the
same time. Since my kidneys deteriorated so fast, he believes they
may heal just as quickly. He spoke to my primary doctor and
virtually simultaneously they both recommended to put me on
steroids. They figure steroids could fix both the rash and the
kidney problems. My primary doctor also stopped both the blood
pressure pill and the penicillin and adjust one dosage and added
steroids and another medication.
June 2 Day (Day 36) The great news today is that I was
scheduled to see my primary doctor in the Transplant Clinic. When I
met with the team there, they informed Deb and I that we are now
patients of the Clinic! This is great news! When I entered Mayo, I
was considered inpatient, then I moved to outpatient and now I am
considered a Clinic patient! Clinic is not located in the hospital
and more like going to a doctor's office. While in Clinic, we will
get more passes to go home and eventually be released to go home.
We have reached the third and final stage!
The results of my rash biopsy were not back from the lab yet.
My rash has now spread to 80% of my body and gotten much worse. In
addition, my blood tests reveal that my kidneys are not performing
well. My doctor scheduled me for a kidney test tomorrow.
In addition, my blood pressure has been pretty high. We
believe this is mostly from the cyclosporine I am on, but the doctor
added a blood pressure lowering medication.
June 1 (Day 35) I have developed a rash over 70% of my
body. I saw a dermatologist today. They took a biopsy of my skin,
but believe the rash is eczema or graft vs. host disease (GVHD). The
biopsy will hopefully give them a clue. We are hoping it is GVHD so
that we can cure it and hopefully be done with it. In the meantime,
I need to apply special lotions to my body twice a day, wrap in wet
cotton and let the lotion soak in. Not exactly comfortable. My white
blood, platelets and hemoglobin numbers continue to fall into line.
I feel pretty good, but I itch like crazy in a couple places.
May 30 (Day 33) Memorial Day Megan and Kelly woke up
fairly early and had to leave for work and school projects. I called
my Dad to tell him Deb and I were home. We made plans for them to
visit in the afternoon. He was so shocked to here we were home. The
whole weekend I was in touch with Andy and we planned on him being
home Monday (today) in the afternoon. It was a perfect day on the
Lake and we spent hours on our deck watching the boats go by. It was
great to see my Dad and Rosalyn and then Andy arrived home shortly
before we headed back to Rochester. Deb and I were in heaven.
Deb and I knew I could not go from "mostly resting" days to
"heavy visiting". I do not have that kind of energy yet. We knew that
seeing all of our kids and my Dad and step-mom would even be pushing
my endurance. We were right. It was very tiring for both of us. We
will see family and friends when I know I am able. Until then, thank
you for your thoughts and prayers. I feel better every day. I hope
we can get more "passes" soon.
May 29 (Day 32) We were home today and had to start
telling our kids. But, Ben was having a Memorial Day weekend
barbeque at his house. Instead of calling him, we figured the only
way to tell him would be to surprise him. And we knew Amy was going
to be at Ben's, so we extended the surprise to her. Next, we called
Megan and Kelly to see if they could join us in going to the party.
They were very excited to hear we were home and both made plans to
join us. In the mean time, I needed to rest up so I could be up and
around at the barbeque. Deb, Megan and Kelly and I drove up the
barbeque and I surprised Ben by calling cell phone to cell phone
telling him the connection was so clear it was as if I was standing
right next to him. Then I walked right up to him. Ben and Amy were
so glad to see us they were speechless. I mustered up enough
strength to stay about 3 hours. It was very fun. Again, Deb and I
were in Heaven.
May 28 (Day 31) Saturday was a very nerve racking day.
I went in for my morning tests to see I would be able to take the
next two days off. There was a little glitch in which tests I
needed. After a second trip to the hospital, we got the final test
results about 2:30pm. We were free to leave for 2 days! We packed
the car and were home on the Lake Minnetonka by dinner time. Since
it was our first trip outside Rochester, we only told our house
sitter and my son Andy that was planning to be home from college on
Sunday. It felt so wonderful to home, sleep in our own bed and see
the green yard. We were in heaven!
May 27 (Day 30) My doctor surprised Deb and I with talk
of a "pass". This means a day that I do not have to come into the
hospital and they suggest that Deb and I return to our home for the
day. We were amazed. They gave us options for a pass day, a hospital
day, followed by a pass day. Or, we were offered Saturday as a
hospital day and have Sunday and Monday (of Memorial Day weekend!)
both as pass days. We enthusiastically chose to have 2 days off in a
row. Since about 20 things needed to fall into place for this to
happen, we decided not to tell anyone.
May 26 (Day 29) My white count passed the magic mark of
1.0. In addition, my body is making its own platelets and red blood
cells. Because of this, I only need to go the hospital once a day
now - unless they find something a little off in my blood tests.
This improves daily living for Deb and I considerably. I can finally
catch up on some much needed sleep.
May 24 (Day 27) My white count hit a new high of .9! I
am getting very close to having a low, but adequate, amount of white
blood cells. Once this happens I will be taken off one of the
antibiotics that I receive via IV three times a day at the hospital.
My quality of life will improve dramatically.
May 23 (Day 26) My day was normal (considering my
condition), but my son Andy graduated from Boston College today!!
CONGRATULATIONS ANDY!! Deb and I had planned to be in Boston for 4
days to celebrate with Andy, but we will have time to for that this
May 22 (Day 25) My white blood cells continued to climb
to .7. And my treat for the day was a visit from my father! It was
so good to see him again. I saved up a bunch of energy so that I
could accompany Deb and my father to our favorite Rochester
restaurant. I still cannot eat in restaurants due to my low white
blood count, but Deb was able to enjoy a nice evening out.
May 20 (Day 23) My white blood cells on Day 21 were .5,
dropped on Day 22 to .4, but, today, my whites hit a new high of .6!
That is roughly half of the level I will need to move to the next
phase. So, things are still progressing on track. Yesterday, I felt
so good that I quite my pain medication, walked more than ever, and
tried eating orange juice and pizza [note to self - do not try this
all in ONE day!]. By the end of the day, I was totally exhausted and
not feeling too well. I have decided to take my advances one step at
a time. I feel much better today.
May 18 (Day 21) Wow - it has been THREE WEEKS since my
transplant! My white blood count reached a new high today of .5. I
feel the best I have since I started chemo. I am walking to and from
the hospital and I am eating and drinking more than I have since my
transplant. The doctors continue to be very pleased with my success.
I am still having lots of little issues, but they are all
being monitored - low grade fevers, nausea, skin rashes, liquid
intake (I am dying of thirst, but my stomach cannot handle liquids
fast), caloric intake (hello? for Dan? - yes, my best day is about
1200 calories), minor diarrhea, mouth sores, etc. These are all
pretty minor compared to my overall progress.
Deb's job is now in "power mode." She prepares all my meals,
lays out all my meds (about 30 pills over 5 different times every
day, keeps the apartment clean, communicates with many family
members and our home sitter, and reports my food and liquid intake
to the doctors. She also keeps track of my hospital appointments and
gets me there on time. Believe it or not, we are actually busier now
than when I was in the hospital. I have appointments at about 7am,
2pm and 10pm every day. They can last anywhere from 30 minutes to 2
1/2 hours. While at home we spend every minute sleeping, eating or
trying to catch up on communications. I predict it will be several
weeks before we can have visitors.
May 15 (Day 18) Update - got released from hospital at
about 3:30pm. Oh happy day! I am now an official Outpatient! My white blood cell count has not
jumped higher than Day 15, but I know from my healing mouth sores
that they continue to increase. My guess is that my white
count will jump tomorrow or Tuesday. Deb and I are looking forward to some quiet days at the
apartment. The hospital is really not a place to catch up on rest.
The doctors continue to be amazed with my progress. I can tell
you that there are lots of patients in my unit that are really going
through a rough time. There are still many challenges ahead for me,
but so far, I am doing excellent!
Thank you all for your prayers and concerns. You are helping
me cope everyday with my progress. I could not do this without your
support! And my loving family, especially Deb, have been with me
daily giving me strength to endure this process. May God shine His
love on each of you! I love you all!
May 12 (Day 15) My new stem cells are starting to work!
The first blood cells being made are the white blood cells. Most of
them them are working hard to repair sores in my mouth, stomach and
digestive tract. But, my the white blood cells level in my blood
took a small jump today, the highest levels in several weeks. The
doctors are very optimistic about my quick recovery. They are hoping
to release me to outpatient status sometime next week!
May 11 (Day 14) I am feeling pretty good today, despite
my tiredness and complications. The doctors are very happy with my
progress and we should see my white blood counts start to rise
within the next 3-5 days. I can hardly wait, I will begin to feel a
lot better when that happens too.
May 10 (Day 13) My energy level has dropped to its
lowest level. I slept most of yesterday, last night and today. In
addition, I have been fighting with nausea and loss of appetite. My
doctors are very pleased with my progress. This nausea, and loss of
appetite and tiredness will probably last another week. I will post
when I feel up to it.
May 7 (Day 10) I have lost all my hair now. I look
pretty funny. But, not too unlike most of the patients in my unit. I
am still in the hospital while the doctors watch my symptoms
carefully. I have been fighting with nausea and diarrhea, skin
rashes, sore mouth, liver concerns, etc. The doctors and nurses
continue to keep me pain free as we deal with each problem. All in
all, I am doing great.
May 5 (Day 8) Cinco de Mayo Hola! I am still in the
hospital. The doctor team has been working on a staff infection, low
grade fever, higher than normal blood pressure, mouth sores, skin
rashes, vitamin deficiencies, bruising, and hydration. I am
improving on all these issues, but new ones pop up every day. I feel
very good and have been sleeping well. All in all, I am still right
on track. Thank you all for your prayers. They are working!
May 3 (Day 6) My cultures from May 1 came back positive
for a staff infection. About 90% of transplant patients get a staff
infection. They said it could be from a bout with strep throat from
many years ago - it becomes active when the white blood count is low
and cannot fight it. In addition, my fever is still under control
with Tylenol. I got my third injection of post-transplant
chemo. It will help in control of graft vs. host disease. I feel
pretty good and I am eating fine. The food doesn't taste good
because my taste buds are dying, but at least I can keep food down
now. I will probably be in the hospital for a couple more days.
May 2 (Day 5) I began a regiment of trying to drink
small amounts of water without vomiting. It took some practice, but
after several hours, I could drink water again. Then, I discussed my
nausea treatment plan with the doctors. After a short time and drug
changes, I was able to eat food again. They continued to add to my
fluids via IV. I began to feel a little better, but needed to stay
in the hospital. My temperature was kept down with Tylenol.
May 1 (Day 4) When I woke up, my tongue felt very large
in my mouth. I showed it to Deb and she called the hospital right
away. They told us to come in right away. By the time we got there,
my tongue was back to normal size. My nausea was worse and I could
not eat or keep water down. They admitted me back into the hospital.
They began new treatments for anti-nausea, antibiotics, and pain. In
addition, they gave me fluids via IV. I also had a fever over
several hours. This triggered automatic cultures to see if I had
some sort of infection.
April 30 (Day3) The doctors are monitoring my blood levels
closely. I continue to fight nausea while continuing to get enough
calories. Day 3 and I am doing fairly well. Got second of four low
dose chemo for Graft VS Host disease.
April 29 (Day 2) It is so good to be in the apartment. I am
fighting with some nausea this morning and lost my breakfast. I
report to the hospital at 12:30pm to see how I am doing.
April 28 (Day 1) My energy level has started to drop as my
white blood counts drop. I will make entries as I have energy. Day
+1 was pretty good. They actually checked me out of the hospital at
about 2:30pm. It was good to be at the apartment overnight with Deb.
My appetite has diminished somewhat as well. Deb and I are trying
hard to keep me full of food and water. I also had a tough day with
diarrhea - another side effect.
April 27 (Day 0) I received my transplant about 12:30pm today.
My donor has the same blood type as I have. This meant that they
could run the stems cells into me very fast. The whole process only
took about an hour and a half. I had no reactions, so I am just
staying in the hospital to be watched carefully. Everything has gone
perfect. Thank you all for your prayers and concerns. My Dad, Molly,
Deb and I are just relaxing in my room. See a picture of my
April 26 I found out this morning that my stem cells
will not arrive until Wednesday. By the time they reach me, it will
probably be somewhere about noon tomorrow. At that time my bone
marrow transplant will begin. All systems are still and go and I
feel fine. My dad and Molly came to visit today and we were able to
leave the hospital for a long lunch. I will rest up tonight for a
long day tomorrow. Deb and I doing great.
Thank you all for your continued prayers and concerns - they
are all working, so don't stop now! I will keep you all posted the
best I can tomorrow. I am certainly looking forward to my big day.
April 25pm I got a pass to leave the hospital from
about 2:30pm today to 7:30. Deb and I bee lined it to the apartment
for some relaxing, eating together and talking about the days ahead.
It was a great departure. Then back to the hospital for more drugs
and prep for tomorrow.
April 25am I got my catheter out this morning at 8am.
Boy, is that a relief. I now step into my final preparations for my
stem cell transplant. I found out my timing on my new stem cells.
Since they are from an international donor, their arrival at the
airport is set for Tuesday at 9:30pm. If they miss that plane, they
will arrive about 10:30am on Wednesday. Once landed in Rochester,
they must be delivered to the hospital and sent to the lab for
processing. So, my transplant will be either very late on Tuesday
night or about noon on Wednesday.
They are pumping me up with cyclosporine, an anti-rejection
drug today so that I am loaded up by the time I have the transplant. My hemoglobin levels have
dropped again, so I am receiving two units of red blood cells this
to boost my energy for what is to come. I am also receiving a
handful of pills to help in many other ways - liver, lungs, viral,
My father is flying home from Florida today to visit to me
tomorrow. My sister Molly will be driving to Rochester with him.
April 24 My last day of chemo was a breeze also. I took
lots of drugs to keep it that way, but the day went really well.
Sleeping with the catheter is the biggest hassle. But, everything
went as planned. I am done with chemo!!!
April 23 Well, I really got hooked up today. They
placed a urinary catheter in me (not fun) and hooked that up to
endless IVs to rinse my bladder and drain it at the same time. In
addition, in my chest IV I received endless IVs to keep my fluids
moving. I also switched to the other chemo treatment, Cytoxan. It is
only a two hour IV. With the big handful of pills I took, I had very
little side effects. But, being hooked up to four tubes severely
decreased my mobility. But for having only one more day of chemo, I
could not be in better condition and spirits. I am almost done!
April 22 I have now had 14 dose of chemo. I had a
pretty strong bout with nausea this morning, but they gave me some
drugs to combat it. I never had to run to the bathroom. My sister
Molly came to visit again. She bought me a couple t-shirts. I wore
one around the hospital. I have no idea why people were staring at
me - picture here. I am more
and more tired, but Deb and I still made it out of my room for a
April 21 I have had 10 doses of chemo and all is going
well. I am only five days away from my transplant! Deb and I are
more bored than anything. The hospital food here is called Room
Service. You get to pick what to eat, when you want to eat and they
deliver within 30 minutes. It is not the best, but very convenient.
April 20 I slept much better last night. I have now had
six doses of Busulfan and no real side effects. I am on a slurry of
other drugs to make sure that happens. My doctor said that this is
normal, but others do have problems. My sister Molly came to visit
today. Deb and I laughed away a couple hours with her. It was so
nice to see her. She left me with some nice foil balloons (I can't
have plants) and a lucky penny from my niece Mary - thanks Mary!
April 19 (3pm) I didn't sleep too well my first night.
Being without Deb only made it worse. But, like clockwork, they
started my first chemo, Busulfan, at 6am. It runs into me for two
hours and then I get a four hour break. Then, it starts over again.
I feel no effect at all. I am told this is pretty much normal. My
really bad days will start about seven days after I received my new
stem cells. I have had two doses and I am doing fine. Deb is here
with me, of course, and we are playing games and passing the time
It is now 7:45pm and I am finishing up my third dose of
Busulfan. I still cannot really tell any effects. I know there are
some rough spots on the road ahead, but so far it has been smooth
sailing. I am getting pretty tired from not much sleep. I am looking
forward to sleeping better tonight.
April 18 I had to fast after midnight Sunday to prepare
for surgery to put in my Hickman venous catheter. I reported to the
hospital at 7am. They decided to give me one more unit of platelets
before and during surgery. I was only mildly put to sleep for the
surgery and I was in recovery in no time. After letting me drink
some water, eat a sandwich and prove I could walk, they released me.
On the way back to the apartment, I got my hair cut, instead of
waiting for it to fall out. We had some fun with the haircut and
took some fun pictures along the way. See them
April 17 Started my Dilantin anti-seizure medicine. It is a
precaution before I begin chemo with Busulfan on Tuesday. No one at
Mayo has had a seizure from Busulfan since they began using
Dilantin. The heavy dose of Dilantin makes me a little "woozy"
though. By the afternoon when I got my transfusion of 2 red and 1
platelets, I did not feel I could walk on my own. So, Deb has been
pushing me in a wheelchair ever since. What a way to travel.