September
16, 2003
Did I mention how brave and beautiful
she is.
It is with a broken heart that I report to
you for the last time. Heidi has fought with grace, dignity and
determination and has finally found the strength to let go.
Heidi Suzanne McIsaac (nee Stanzel) died
today, September 16th 2003 at 1:49pm.
I know that if you are reading this your
heart is aching, as she has made a great impact on everyone whose life
she touched. I will not use this moment to tell you all about who she
was, instead I leave you with your own personal memories and hope that
you will find peace as Heidi has.
October 4th 1969 - September 16th 2003
The Funeral Services will be held at
Oshawa Funeral Service
847 King Street West
Oshawa, Ontario
L1J 2L4
(905) 721-1234
Details will be in the Toronto Star on
Thursday, September 18th 2003
Sept 7th 2003
Just a quick
note to let you know that not much has changed since the last update.
Although her liver counts are still elevated, they have stayed down
since my last reported decrease . The rest of the lab results remain
inconsistent except for her kidneys, which are steadily high. Her blood
pressure has been high and she is back on meds for this as of today.
She continues to receive blood, platelets etc as needed and is still on
antibiotics for the blood infection. She will be having a bone marrow
biopsy early this week to have a closer look at what is going on in
there. Please note that it does typically take some time to get
these results back. So far there has been no change to indicate
if the Graft has taken…she still has less than 0.1 White Cells and
Neutrophils are zero.
She got to see Alannah and the girls today. Brave and beautiful as
always she is sleeping now…probably dreaming they are still here.
TTFN!
Sept 3rd
2003
Here
it is, a long overdue update for Heidi. It's
Sheri, still writing on Heidi’s behalf.
From a lab perspective there is not much new to report. The counts we
report on continue to go up and down, but are certainly not getting
worse. As a matter of fact her liver counts have shown some minor
improvement…lets keep up that positive thinking. Heidi has also
developed an infection in her blood and is on yet a different set of
antibiotics. There continues to be a series of ailments (blood in
urine, mouth sores, etc) and she battles them as best as she can. How
she does it, I will never know.
Has the Graft taken you ask…regretfully we do not have news on that
front yet. She still has less than 0.1 White Cells and Neutrophils are
zero. We still have a week or so to know if the transplant was a
success.
Want some good news??? Silly question, I am just having some fun with
the fact that I can write the words “good news”. Heidi has sat up in a
chair for a few minutes a day for the last three days. She is awake
much more than last time I wrote and is much more talkative. The flip
side of this is that the more alert she is the more frustrating things
are for her. As always her strength prevails and she gets through these
moments quickly. Did I mention she is brave and beautiful?
TTFN!
Aug 25th
2003
Good morning again from hotel PMH.
We have stopped with the daily count updates for a couple of reasons.
Mostly because we aren’t updating the site on a daily basis, also
because we do not expect them (white cells (WBC) and neutrophils (N)) to
change drastically until her Graft takes. Her hemoglobin (Hb) and
platelets tend to change daily and she receives blood or platelets as
necessary.
Her kidney and liver counts, which were not being reported on the site
previously continue to be a cause for concern. People keep asking “but
is she getting better”, we don’t have any answers yet. What we can tell
you is that over the last few days she seems to be holding her own, with
her liver and kidney counts marginally going up and down. It is good
that she is not getting worse, and not great because they are not
trending down. I spoke with the doctor this morning and it could be
another 10 days or so until we see results in her counts that would
indicate that the Graft has taken.
She is tired and still sleeping more than not, but her spirit is still
strong. Brave and beautiful as always, when she wakes she wants to set
goals…have we ever known her to be different?
Until then, trust she is doing as good as she can be…TTFN!
Aug 23, 2003
Hi there from Sheri, reporting
from Heidi’s room at hotel PMH.
Just a quick note to let everyone know that Heidi is still continuing to
fight the good fight. We are in that “twilight” stage right now where
there is not a lot to report on a daily basis. Her kidneys, liver and
fungal pneumonia are still a concern and the medical team here are
treating her as aggressively as possible. Treatment is tricky, as a lot
of the medication will pass through the compromised organs. She refuses
to let these conditions worsen. Over the past week or so, her kidney
and liver results will go up and down, but do not trend in any one
direction. Currently she is sleeping as she has been for the better
part of the last two days. Maybe her body has asked her mind to slow
down and relax for once so that her body can focus on wellness. When
she wakes, she is fairly alert, asking questions and of course still has
yet to loose her sense of humour.
She remains brave and beautiful and ready to kick this thing in the
butt.
TTFN!
Aug 18, 2003
Hb 91 Plt 29 WBC 0.4 (N) ? (the nurse did not have them handy)
Please note that we will be doing our best to update the site
as regularly as possible and appreciate your patience when there is a
delay. Thank you also for restricting the calls into Heidi’s room, as
she is not able to speak on the phone due to her mouth sores, medication
and her need for rest. We would prefer that the Website remain the main
communication tool.
Her energy
is typically low, although she has perked up a little over the last two
days. She still battles the previously mentioned (or referred to)
ailments…I choose the word battle carefully as she is a fighter, with a
determination that would make you proud to know her.
There are
concerns about her liver and kidney functions at this point. We have
discussed this with Heidi and she reassures us that she has no plans of
going anywhere…she still plans on that survivor party! She certainly
hasn’t lost her spunk…today there was talk of Chip and Dales (I am not
referring to the cartoons). Quite seriously though, if anyone can pull
through it is Heidi. Trust us, Chris and I have seen her run and she is
no quitter…as a matter of fact last week she was talking about her next
marathon already.
Thank you
on behalf of Heidi and the rest of the family for your
love and support. Heidi is still grateful for any positive thoughts,
prayers and well wishes.
TTFN!
p.s. did I
mention how brave and beautiful she is…even through all this, she
shines.
Aug 8th Counts
Hb 102 Plt 49 WBC 0.3 (N) 0.1
Aug 10th Counts
Hb 105 Plt 23 WBC 0.1 (N) 0.1
Aug 11th Counts:
Hb 91 Plt 39 WBC 0.1 (N) 0.1
Aug 12th Counts:
Hb 75 Plt 42 WBC 0.2 (N) 0
Aug 13th Counts:
Hb 88 Plt 59 WBC 0.1 (N) 0
Aug 14th Counts:
Hb 93 Plt 31 WBC 0.1 (N) 0
"Apologies for
the delay, Heidi is fighting the good fight and using all her energies
to do so"...hi...this is Sheri, writing on Heidi's
behalf today.
It has been a long six days since the last
update and there are far too many details to include. I will do my best
to compile a “Coles Notes” version.
First off, I mean what I say about her
fighting the good fight. She is getting hit pretty hard over the last
few days and is managing to cope with dignity, grace and determination.
I get asked repeatedly when we will know if the transplant is working…it
will be a few weeks to determine if the Graft has taken and then there
is a chance of rejection. There isn’t a set date with a yes or no
attached but we will know more in a few weeks. Trust me…when we are on
the up side and this takes, we will let everyone know.
I met with the pharmacist today to review
all of her current meds, there are too many to list and they seem to
change or alter quite often. As expected her energy is low and the
battles (complaints as she put it previously) have grown. Without
providing you with the laundry list of current ailments, please know
that she is doing as good as can be expected now. She is not able to
talk on the phone these days, please do not be discouraged by this. The
doctors and nurses are on top of everything and helping her through this
as best as they can. Her pain meds have also increased, so this of
course causes some confusion and fatigue.
When able to, she still has her twisted
sense of humour and she is brave and beautiful as always. Please
continue to send your positive thoughts, prayers and well wishes…I
believe they work and I know that she believes it too.
As Heidi and Tigger would say….TTFN!
Fri. Aug 8/03
Today's Counts:
Hb 112 Plt 38 WBC 0.3 (N) 0.3
Energy: moderate but impeded by chest
discomfort and shortness of breath
Complaints: indigestion, hunger pains but no
desire to eat due to heartburn/indigestion, mouth/throat sores have
started - that is the radiation and chemo have started to break down the
mucosa lining in my mouth, aesophagus and GI tract - this is called
mucousitosis and is unfortunately a common reaction to the treatment.
Consistent use of sodium bicarb mouthwash rinse and a special
mucousitosis mouth was with lidocaine will help a little with pain
relief.
I had another chest x-ray and CT scan of my
lungs and Dr. Loach has confirmed that I have developed another fungal
pneumonia of the lungs, primarily in the left side as before.
Fortunately, early intervention was the key this time and no time was
wasted on getting me onto the correct medications. Dr. Loach
recommended a platelet transfusion, although platelets aren't usually
ordered until they've dropped below at least 20, due to my lung
condition as he wants to avoid further complications by perhaps a
bleeding lung. I am very pleased with Dr. Loach. He is another of the
many fantastic doctors here at PMH... and as I've mentioned before, I do
NOT think that they are all great! I was hoping to do some minor
exercise today because I really don't want to get as weak as I've been
in the past. However, Dr. Loach is discouraging exercise at this point
due to my Oxygen saturation, I guess I should appreciate this having had
respiratory difficulties in the past. I certainly don't want a
recurrence as severe as the last time but I'm just anxious to leave here
this time in better shape than when I was admitted... I know chances are
slim but it gives me a bit of goal!
I was very drowsy today, likely due to the
constant (low dose) morphine drip for the chest pain and the
Demerol...not to mention a lack of sleep. Sheri and Grant spent most of
the day with me and didn't leave until 11:50pm. Luckily, my car was
still parked where Sheri left it on Aug 6/03 and only cost them $54 to
get out - he he. My wonderful hubby was here too and spent most of the
afternoon and early evening. He had to leave at 6:30 to pick-up Jackie
and Kelly. Wow, do I miss them. At their age they can change
physically (and emotionally) so quickly and I hate missing out. Kelly
really sprouted this summer and is as tall as her "bigger" twin sister
now. However, Kelly is still our "skinny-mini"!
Currently my standard daily medications are
as follows:
- Levothyroxin 0.075mg 1 X/day for
hypothyroidism
- Zoloft 50mg 1X/day - anti-anxiety
- Clonazepam 0.25mg nightly - sleeping
pill as needed
- Cyclosporin 130mg 2X/day via IV - an
immuno suppressant with the purpose of reducing graft vs. host disease
reactions
- Acyclovir 80mg every 12 hrs (2X/day) -
an anti-biotic given as a prophylactic measure
- Tazocin 4.5gm every 8 hrs ( 3X/day) -
a broad spectrum anti-biotic also for prophylactic measures but standard
for lung infections
- Amphoteracin 50mg 1X/day given via IV
- an anti-fungal drug for the fungal pneumonia, I've been on this many
times in the past 6 months., it requires pre-medicating with Tylenol,
Demerol and a steroid. - Yes, I do love Demerol hour - that is Happy
Hour. One hour of total bliss and a peaceful state of mind! Even
though Amphoteracin is hard on the liver I do find the Demerol worth the
risk! Give me a break, I get so little pleasure from the drugs I'm
given in here. Demerol is the only one that has any mental and physical
positive side effects! Everything else seems to cause indigestion or
diarrhea.
Sorry for the long winded update but I think
that covers most questions/answers for the next few days anyway.
Tomorrow's update I promise will be much shorter!
Love to all - TTFN and TGIF
Heidi
Thurs. Aug 7/03
Todays Counts
Hb 113
Plt 52
Wcb 0.2
(N) 0.2
Energy okay but fatgued. Appetite not
good. My treatment has been delayed by 24 hours and I won't be
starting my TPN (nutritional IV drip) for a few days. Also the
methotrexate won't start until tomorrow, this is being used as an immuno
supressent (to control Graft vs Host disease) not a chemo drug. I
started drinking a nutitional suppliment today - hopefully it will fill
the void. Nothing else seems to be working.
My day started out poorly, lack of sleep, GI
problems, sore abdomen, indigestion, sore chest!
Cathy, Chris and Sheri were here. It is
nice to have company that doesn't need entertaining, just having them
with me is comforting enough. By about 7pm I started to livenup and
feel better. My chest was still very sore from the respritory
difficulties I had experienced throughout the night. Sheri stayed
overnight again and we relaxed and watched a movies until midnight.
Fortunately, we both had a relatively good uninterupted sleep. I love
Sheri being with me but I worry that she isn't getting enough rest. Of
course I worry about Chris too. I'm sure trips to PMH daily take enough
energy out of him, plus work, keeping up the house and the kids...my
babe sure is amazing.
Thank you to all who called me before and
after the transplant. I appreciate every single call! All of
your love and best wishes have been well received.
Love Heidi
p.s. I had a chest x-ray today and waiting
results.
Wed.
Aug 6/03
Today's Counts:
Hb 106 Plt 76 WBC 0.2 (N) 0.2
Well the big day has arrived!! I awoke
feeling ok but with abdominal cramps and some back pain. My energy
level was ok and my appetite has not been good. I was seen my Dr.
Lipton and Dr. Loach and it was explained that my match was at least
8/10 or 9/10 but there seems to some confusion about whether or not my
match was harvested via bone marrow or peripheral stem cell... I've
asked for clarification which the Dr. will look into. Sheri and Chris
came to visit and my IV line was capped off so we were able to go out to
rent a few movies and I had the pleasure of watching them eat great
Chinese food.
My BMT transfusion started at 9:10pm and I
had two units to be infused. My 1st unit ended about 10pm and then
Chris went home. Fortunately for me Sheri was able to stay with me for
the night because shortly after Chris left my lungs filled up with
fluid--- this was a result of all the hydration I was receiving via IV
and my bone marrow volume was over 1 litre. The transplant was put on
hold while they gave me Lasex ( a dihuretic) to void myself of as much
fluid build-up as possible. The 2nd bag of blood (marrow) didn't finish
until 3:10am although it was originally expected to finished before
midnight. My oxygen saturation dropped to 88 briefly but on average was
about 90 while on 6 litres of oxygen. I coughed a lot and today my
chest is very sore and I'm still on oxygen.
I went sleep at 3:30am a little rattled from
the experience but feeling euphoric knowing that my "new" life has began
and in time I will be well again. That's how I see myself - alive,
changed, vibrant and running! My treatment schedule has now been
delayed by 24hrs... just minor.
I'm feeling everyone's positive energy and
prayers so don't stop yet. Thanks to all of you out there! Much love
and best wishes to all,
Heidi
Mon. Aug
4/03
Today's counts:
Hb 80 Plt 105 WBC 1.5 (N) 1.5
My energy today was moderated.. . I biked
and did my weights but I was pretty tired. The whole GI tract problem
started again today, so I was in some discomfort. Although I was warned
it would happen it difficult to prepare for it because you just keep
hoping it won't happen.
Tracey and Chris came to visit me today.
Tracey's hair is growing beautifully and she's a whole different beauty
queen now!! We played yahtzee for a while and just chatted. It's so
wonderful having company when I can just relax. This was my last day of
cyclophosphamide and then I don't receive any major treatment tomorrow.
Hopefully I'll get at least a short day pass to spend with my Mom and
Alannah.
TTFN - Love Heidi
Sun. Aug
3/03
I awoke feeling hungry which made me feel
nauseous with the dry heaves. It's hard to eat due to the indigestion,
heartburn and dry-mouth. Early this morning I was started on a saline
drip because my chemo (Cyclophosphamide) starts today and it is
extremely importants to keep well hydrated and particulary to keep the
water works flowing... lots in & lots out! This particular chemo can
cause bleeding of the bladder lining if not monitored. I will get Mesna
4x a day today and tomorrow. It binds the urine to ensure no bi-product
from the cyclophosphamide is left in the bladder... science eh!
Sandy & Michael came to visit for a little
while. Michael sure comes out the sweetest things to say. He so
desperately wants to understand what my medical condition is all about
(he's 10). The best part is, he's absolutely certain that everything
will work out just fine. Thanks Mike - your Auntie Heidi loves you!
Chris also came to visit - yes I broke the
rule again and had 3 visitors instead of just 2. He spent most of the
day with me and we ordered chinese food which was good but with appetite
not as satisfying as I'd hoped. I wonder when I'll start to lose my
hair again - it just started to grow back 5 weeks ago!
TTFN - Tigger's so cool!
Love to all,
Heidi
Sat. Aug 2/03
Today's counts:
Hb 88 Plt 147 WBC 4.0 (N) 3.9
My energy level was ok but I experienced
some mild nausea again. My BMT doctor on the ward, 14B is Dr. Loach. I
like him and he's got a great bedside manner which makes me feel much
more comfortable. Drs. Messener and Lipton, being clinical Drs will
still likely oversee my overall transplant process but won't be my
primary care doctors.
Since I didn't have any treatment planned
for today, I was able to leave on a day pass. At least was able to eat
out... I can see the headlines now Leukemia Patient Suffers Death of
Taste Buds by Hospital "food"! Sheri and Grant took me out for the
afternoon, we went to the Eaton Centre and sadly, I didn't buy a single
thing! Sheri and I went to the movies and saw Finding Nemo... it was
the only suitable time slot and besides it was fun. However, Shrek and
Monsters Inc. are tough acts to follow. After having New York Fries
covered in Malt Vinegar and Nachos with cheese and Jalopenos it's now
wonder I was sick when we got back to the "hotel" sometime after 9pm...
it was worth it though! After the movie we broused & bought at
Chapters, Sher and I could spend hours in a book store. Just for the
record, I'd really like to read "the Vagina Monologues" , it's
apparently very entertaining.
TTFN - Sincerely,
Heidi
Fri. Aug
1/03
Today's counts:
Hb 91 Plt 192 WBC (leukocytes) 8.0
(N)- neutrophils 7.7
I had some trouble falling asleep last
night, so I was up 'til 12:30am reading. Therefore, I'm tired this
mornining. Overall, my energy level is ok and I biked and did some
minor weight lifting again today. My last 2 radiation treatments were
once again uneventful. I did experience some mild nausea around dinner
time, but I'll say it again... the hopsital food sure doesn't help!
TTFN (That's Tigger - you know from
Winnie-the-Pooh - saying Ta Ta For Now)
Heidi
July 31, 2003
My second day of TBI was uneventful, thanks again to anti-sickness
medication.
My energy level was supposed to drop, but so far it seems to have had a
reverse effect. Perhaps it\s because I was reading Lance Armstrong s
book during his fifth Tour de France victory after his battle with
testicular cancer. He provided lots of inspiration to attempt to stay
as fit as possible&October 2004, another half marathon ??? Maybe even a
full marathon!!!!
By my own account, cancer is not a death sentence. It s a rebirth, a new
beginning to a way of life. This is my second rebirth, I m so very
fortunate. With cancer, you make the choice to accept or deny what you
have, and then decide what you will do with it. Do you choose to live or
to die? I CHOOSE TO LIVE&AND I WILL for me, for my family and for my
friends, all of whom I love dearly and owe so much of my life to.
Okay, enough psycho-babble! This year I am an honouree for the Team In
Training, ( more info to follow later ) I will be matched with
participants that don t have any personal connection with
leukemia/lymphoma. Hopefully I can inspire them enough to raise some
good $ for LRFC, encourage them to cross the finish line, not to mention
create awareness.
Since yesterday, the food here has only gotten worse. My friend Andy (
lymphoma patient) and his roommate Allan and I, ordered pizza last
night, to fill in the stomach void. Poor Allan didn t stand a choice 1
piece only, while Andy and I devoured the rest of an extra large,
leaving only two small pieces behind for the nursing staff on 15B. I did
however exercise on the bike for 35 minutes today!!!
My sister in law Cathy and Jenna came to visit for the day, and
everything seems to be going well so far with the exception of slight
swelling of feet and ankles at the end of the day.
Today\s Counts
HB 96 PLT 185 Leuk 7.6 Neut 7.3
July 30,
2003
All things considered I slept quite peacefully last night. It was a nice
change being here at PMH without an IV pole being attached. My appetite
this morning was moderate… the food hear really turns me off!! This is
my first day of total body irradiation ( TBI ). At 9:15am and 3:15pm. I
was given decadron (steroids) and granisitron (anti nausea medication).
The radiation can make some people sick, hopefully I won’t be one of
them. For the treatment I had to lay down on a hard board on wheels
about 2 inches off the ground. First I was on my back, head turned to
the left the radiation technician marked my chest and films were taken
to mark exactly were my lungs are. Since the TBI machine must see the
patient as a rectangular block I was packed with strips of “bolus” (a
solid jelly like substance). The bolus strips are of various thicknesses
and simulate body tissue, to ensure that my body receives equal doses of
radiation. Due to the low density of the lungs I received a full dose of
radiation on my lungs the first time but for the next five treatments a
mini lead mould will be made of my lungs placed under the Radiation
machine and projected onto my body. This is done to minimize radiation
exposure to my lungs.
I
started the Low Microbial Diet again even though my counts are OK. I
have: Lots of energy, slight swelling of feet and ankles, eaten well and
done lots of exercise today.
Today’s Counts Hb 87 Plt 157 Leuk 4.1 Neut 2.4
Love Heidi
July 29, 2003
I was admitted, once
again, to PMH. This time I brought tons of stuff with me: games, doodle
art, books, pcitures, markers, etc. I was
examined by Jacob, the resident doctor, and he allowed me to have an
evening pass. Chris and I went shopping at the Eaton Centre and then
had dinner at Mr. Greenjeans. Fortunately,
I have lots of letovers so I don't need to
eat the hospital food today. I was a little weepy when Chris left. I
am nervous, anxious and exicted all at the
same time. Having had long stays in the hospital in the past, I already
miss Chris, Alannah and the rest of my
family. However, I am confident that things will work out just fine.
The radiation doctor, Dr. Wells, came to see me to explain the radiation
procedure. Otherwise the evening was uneventful. I will continue to do
daily updates. Please send your good thoughts and prayers my way, it
seemed to work before and my best wishes to you all.
Love Heidi
REVISED TREATMENT SCHEDULE
July 30, 31 and August
1 - total body radiation - 2 times per day
August 2 - no
treatment
August 3 and 4 -
Cyclophosphimide (Chemo)
August 5 - no
treatment
August 6 - transplant
August 7, 9, 12 and 17
- Methotrexate (Chemo drug also used as
anit-rejection)
July 13, 2003
Hi again everyone...
I've come back out of hibernation. Here's what's been happening
since June... I'll try to keep it brief but you all know me by now,
keeping it short and sweet has never been my forte!
- The infection had
was not easily treated and took about 21/2
weeks of antibiotics before the strepp.
infection was gone completely.
- During that time, I
suffered from pretty severe GI (gastrointestinal) problems. I
experience a lot of pain and cramping for a few days and many weeks of
general discomfort.
- I remained in the
hospital for exactly one month, a lot longer that I'd expected because
my GI problems were causing me to lose all of my electrolytes and
dehydrating me.
- I went for an
abdominal X-ray which didn't show much and then finally a colonoscopy.
The colonoscopy (done about a week prior to my release) revealed that I
still had some inflammatory edema at the start of my bowel which was
still causing my GI problems.
- I am now feeling
much better and have not had any chemo for about 3 weeks now because it
was stopped while I was in the hospital to allow my body to heal.
- Due to the GI
problems, I had been on a liquid diet, no sugar, for awhile,
then graduated to liquid with noodles or
rice, crackers, white bread or melba toast.
- Now that I'm home
(it will be one week tomorrow) I've been able to introduce one new solid
at each meal not to exceed 3 new solids a day including fruits.
- My GI problems seem
to be resolving!
Good news!!! My
results from July 8/03 are in!
- The Dr. Lipton
decided I need more time to get my strength back and postponed my
transplant to Aug 6/03 - I will be admitted on July
29/03.
- My bone marrow test
results are in... absolutely NO
leukemic cells in my marrow and NO sign of
the
Philadelphia
chromosome which means on CML!!
- My doctors seemed
quite happy with these results and is very
positive for my upcoming transplant.
- Yesterday, I went to
clinic at PMH and all counts are good. However, my
neutrophils were at 1.0 and they don't want them to drop any
further so I am no self-injecting Neupogen
for the next 7 days to keep my neutrophils
up!
So
that's about it for now! Now that it's getting close, and I'm
getting stronger, I'll be updating more frequently (I'm not planning on
winding up in the hospital again unexpectedly).
Definitely,
once I'm admitted updates will be daily although they be given by Chris.
Please keep those
prayers and good thoughts coming my way! It seems to be working
for me and remember I could not have made it this far without ALL of
you!!!
Much love and thanks,
Heidi
June 25, 2003
Chris made it back from his fishing trip on June 14 in just enough time
to answer the phone…the hospital called and wanted me to be admitted
immediately. The fever I’d been experiencing was the real deal and
my blood cultures revealed a streptococcus bacterial infection.
The infection or some other form of it infiltrated my bowels and caused
some action!! I’ve been on IV meds ever since… anti-fungal and
antibiotics. I had some pretty terrible abdominal pain for the
first week. It’s still persisting but has definitely improved and
I am on the road to recovery. Hopefully, I’ll be home by the
middle of next week at the latest. I won’t have too much more time
to enjoy life at home before coming back in for the transplant.
I’m certainly getting anxious about it and keep looking ahead to a time
when I can then look back on my experience and help others get through
it. It seems like a million years away but I know that in only 3-6
months I should start to feel “normal” again.
Once I’m home I’ll send another update. For now I’m just dealing
with the one visitor per day policy. It sure makes things tough
when I have so many family and friends that I want to see.
Sometimes it’s days between visits from Chris, my parents, Alannah &
Sheri. Oh well!
Take care everyone, please keep sending me your good vibes and
positive thoughts.
June 13, 2003
Hello everyone, I
know my updates have been few and far between but there's not always a
lot to report.
Events: On June 6/03
I attended the "Relay for Life" for the Canadian Cancer Society.
Sylvia and her family took Alannah and I and
Carolyn (Sylvia's daughter) and I participated in the "Survivor Lap".
It's actually a great event, a team is put together and someone from the
team must be on the track at all times from 7:30pm to 7:30am. The
idea is to get pledges and raise $$ for the
CCS. We were unable to put a team together but we have thoughts
for next year. Bowman the Lion from the
Bowmanville Zoo lead the survivor lap
with Sandy Hawley (jockey & cancer survivor). I had the
privledge of not only having my picture taken with Bowman but
also had Bowman snap at me and leave a large bruise...ok it was a
teeny-tiny bruise but it sounds better the other way. When I get
the picture emailed to me, hopefully we can get it up on the webpage.
Event: June 8, 2003
It was a great day
at Heydenshores
Pavillion for theUFCW Walk for a Cure
(For Leukemia Research Fund, Eastern Region Branch). I walked a
little of the 5km but mostly was pushed in a wheelchair. About 3
dozen family and friends donned t-shirts proclaiming "WE'RE here FOR
heidi". Sylvia's
idea no doubt!!! Although all tally's aren't quite in it is
projected we raised +/- $32,000!!! Our
goal was $50K but we did well considering last year the total was about
$23,000! A big thanks to volunteer organizers Deanna
Weekes (my favourite nurse), Jackie
Robinson and our UFCW representative who I unfortunately did not have
the pleasure of meeting that day!!
My health: I
went to the hospital on June 3/03 and my
haemoglobin was down to 74, so I received 2 units of packed cells
(whole blood for
haemoglobin). I spiked a fever which
is not uncommon when receiving blood products but it ranged between
almost normal to 102.5 F for a week. I was put on an anti-biotic
for the GI tract but taken off a few days later because the samples came
back normal. All blood cultures appear to be normal as well.
I started my 3rd cycle on June 10/03 and received a full round of chemo
along with steroids. So the steroids mask fevers and infections,
today Dr. Minden prescribed Septra (another
anti-biotic) just as a prophelactic measure.
My stomach has been fairly upset this past week and my appetite hasn't
been what it usually is. Hopefully, after another day or two on
steroids I'll be an eating machine again.
Family: Chris, my
Dad and Brothers-In-Law Bob, Peter and pseudo B-I-L Reuben along with a
few other guys left for a weeks fishing trip on June 6/03 and will be
back tomorrow. I'm glad they went because my transplant date is
fast approaching and I wanted them to have some time to relax and enjoy!
I guess I'll be in for some "fishy" stories when they get back.
Hopefully, my Mom had a bit of a break, Ma went to Uncle
Dion's then Uncle Calvin's for most of the
week and Sheri, Grant, Malvia,
Alannah and Dars
all pitched in to look after me (Sheri or Mal staying over night).
Thanks family & friends for being so great to me AGAIN!!!
Alannah's been negligent her regular
household chores but in all fairness she really has watched over me like
a mother hen this past week and been my gopher!
I have attached a
schedule for my Pre-Bone Marrow Transplant as well as test required
should anyone be interested.
Take care and I'll
update again in a week or so when something exciting happens!
Remember.... no news is sometimes good news!!
All the best to
everyone!
Love,
Heidi
May 29, 2003
Hello Everyone!
I've not been busy
but there hasn't been much to say. I'm 1/2 way through my 2nd cycle of
this current phase of treatment. I'm ok, but right now I'm having some
bone and muscle pain due to the steroids. When I feel good I do what I
can, but some days I feel so helpless! Sometimes my muscles get so
weak I can barely climb the stairs or walk at all. It seems to come
and go. Chris works so hard I always feel so guilty! He's been
so good to me I'm going to owe him big-time when I'm well again.
I received a call
from the hospital today and my transplant has been scheduled for July
23, 2003. I'll be pre-admitted on July 18/03, I'll have 2 days of
chemo followed by 3 days of full-body radiation. On July 8/03 I'll be
having all my "pre-op" tests, including a bone marrow test to ensure
I'm still in remission. Today's call has made me anxious about the
procedure and the future but I will continue to take things one day at
a time and get through each day as it comes.
I'll keep everyone
as up-to-date as is interesting.
I know I'll get
through this with all of you behind me!
May 21, 2003
Hello Guys and Gals,
I skipped chemo on Friday so that I
could enjoy my weekend at the cottage. I'm glad I went, it was
such a beautiful weekend and I think God kept the blackflies away just
for me....I only go one bite... right in the middle of my forehead of
all places!!! It was great seeing the Rush Lake crowd... Judy,
Joey, Mr. & Mrs. Henry Sr. - Henry's Steve and
Sharon and the kids, The Martins - Good luck and best wishes on your
move to Boston. We've all enjoyed you company over the last 4 yrs
- couldn't ask for better neighbors!! - That includes you Steve (just
kidding), Janet & pups, and especially Sharon & Nicole... I love
my chats with you guys... yeh...yeh Paul you
too and that string bean of son you have! Hey Sharon, maybe he'd
be taller if he didn't bash his head into the fence so many time (sorry
that still makes Mom and I giggle!).
Yesterday at PMH I got full chemo
but some of it at a reduced dose because my neutrophils are only at 0.6,
they don't want me to become neutropenic ( zero neutrophils) - that
would mean back into the hospital. Today I feel ok, but it's back
downtown 1st Mt. Sinai for a MUGA (heart test) then PMH for CT Scan on
abdomen and chest - all in preparation for my upcoming transplant in
July sometime (date TBA). I'll likely get the results on Friday
when I'm back at PMH for a count check and GMSF injection to stimulate
my neutrophils into my peripheral blood (that is out of my bone-marrow).
I'll keep you all posted.
Gotta' go, I'm late as usual!
May 14/03
Hello Everyone!
I've been fortunate because I've felt pretty good for the last 5 days.
My muscles are still weak, but that will continue as a result of the
chemo drugs. I was at the hospital yesterday. I was
supposed to start my second 21 day cycle, which meant I was supposed
to get a full round of chemo and start my chemo pills for 14 days.
However, my platelet count was only 40 and it has to be at least 50 in
order to get chemo. Hopefully, my platelets will go up by
Friday, if not I guess I'll need a platelet transfusion first.
On May 21/03 I am having a MUGA test (to test the strength of my
heart) and a CT scan on my abdomin and chest. These tests are required
to ensure I'm strong enough to endure the bone marrow transplant.
I'll let you all know how it goes.
My appetite is still ok, I'm trying hard to put on some weight.
When I feel good I try to eat alot to make up for the times when I
don't feel so great.
Well, take care everyone. And I'll update again on Friday after
my trip to the hospital.
Much love,
Heidi
May 8/03
Well folks today is
probably one of the best days I've had in a very long time. I
guess because I haven't had any chemo for a few days. On
Tuesday it was confirmed that I am still in remission and the donor
screening process has been activated. I will be scheduled for
a date sometime in July for the bone marrow transplant. It's a
scary thing... the risks are high. But I am confident that
I'll pull through because I have too much going for me, too much to
live for and so much love and support! Since I've been out of
the hospital I've only need on 1 blood transfusion and so far
haven't needed any platelets although they are starting to drop.
My white cells are low but I receive
neupogen shots on Tues and Fridays to
help keep the neutrophils up. I'll
be starting some physiotherapy soon because I'm still pretty weak
but hopefully I'll regain some strength in my arms and legs soon.
Take care, more
next week. I'm off to the hospital tomorrow for the day!
Love,
Heidi
May 7/03
Happy Birthday
Jackie and Kelly! Wow - double digits!
Love you,
Heidi
May 6/03
Hello Family
and Friends,
I apologize
for being so negligent in keeping everyone up-to-date on a daily
basis. I haven't made much of an effort because I haven't
really had the energy to make it into the basement to use the
computer. I know this is unfair as so many of you have been
so caring and loyal and following my progress, I will make more of
an effort from this day forward and it will be long haul.
I came home on
April 16/03, just like I told my doctors I would! The first
2 days I was violently ill and then a few good days. After
being home for 6 days I started the first cycle of my
intensification phase (phase III). It involves 10-21
day cycles. On day 1 I get injected
chemo (doxorubicin & vinblastin), L'asparagenase in the butt
(which I continue to get every Tues throughout the cycle). And
from day 1 to 14 take oral pills of Glivec and 6MP (both chemo
drugs) then I get 7 days off and then start again. The type of
chemo changes a little towards the end of the cycle. I am
having a lot of stomach problems with this part of the protocol.
I'm eating but I my I have a lot of pain in my stomach and
abdominal area. I've had it checked out and it seems it's
just gastrointestinal irritation caused by many different factors
including medications & chemo.
Today is my
step-daughter, Kristine's Confirmation. Naturally, I
wouldn't miss it I just keep telling myself I need to stay well
today! It's a long drive to her school and back!
I have been faced with the
decision of whether or not I want to proceed with a bone marrow
transplant or not. I have 3 potential donors (none yet
confirmed), but they need my commitment first. Without a
transplant my time is limited on this protocol...I won't give
details because I don't really believe in statistics. An
unrelated donor transplant is risky business. First you are
tested for overall strength, heart, kidneys, liver, respiratory,
dental etc... Then if all is well 6 days prior to transplant you
are admitted and begin chemo with full body radiation 2x/day for 3
days. You are placed in isolation for about 3 weeks because
all of your hemoglobin, platelets and white cells are destroyed.
It is during this time that you become prone to infection etc.
On day 1 the transplant takes place. It is only blood (bone
marrow) administered through the hickman line (just like a blood
transfusion). The graft (the donor's marrow) should start to
take within about 2 to 3 weeks. During that time there is
risk that the graft won't take and that the Host (the recipient)
will reject the donors marrow causing either chronic problems or
acute such as heart, kidney, liver, respiratory failure etc.
I consider myself fortunate to
know that at least for now they
have 3 potential donors and will surely pick the one that's best
suited for me. I'd be admitted sometime mid to end of summer
if all goes as planned. It's scary and it's going to be
rough. I would ask all of you to please help my family in
anyway you can with you support, strength and love. I will
continue the fight always drawing in everyone else's support and
help. When I don't feel well I suffer from brief moments of
depression, wondering if this will every be behind me, will the
pain, discomfort and sickness ever stop. But it will!!!
Most often I am strong and I know that I can endure. My work
here is not yet done. Post-transplant my mission will be to
continue find ways to create awareness about the need for bone
marrow donors and platelets, not to mention the need for whole
blood! I hope to inspire others to never give up, to focus
on getting better one day at a time!
So, being home
has been wonderful! I love seeing Chris and Alannah and
parents everyday. I am experiencing a lot of muscle weakness
due to some steroids that I've stopped taking and I feel like a
big noodle but I'm going to get myself some physiotherapy and try
to regain my strength before transplant!
FYI: I
go to the hospital every Tues and Fri for blood checks. So
far this past Fri was the first blood transfusion I've needed
since I've been home which is pretty good. I haven't needed
platelets yet and my white counts are low but ok, I just have to
be careful what I eat.
I wish I could
answer all of you emails in a more timely fashion and shower all
of you with thanks', but I hope you
understand that it's been difficult to keep
the mojo going most days!
April 16
I am being
discharged today!!!
Yesterday I spoke
to Dr. Anna and the discharge nurse at length about the "risks and
precautions" of going home.
- no large crowds
ie. malls, restaurants, stores
- everyone is to
wash their hands upon entering my home, before touching me, or my
food.
- children
especially are to wash their hands frequently ( at least every hour)
- I am not to be
near ANYONE who has even the slightest symptoms of a cold or the flu
(not to mention SARS)
- I am not to be
alone for a few weeks
- dogs ARE
allowed, just no picking up after them or grooming.
- exercise slowly
and daily resting often and when necessary
- I have been
advised that the rehab will be a long process
I would ask that
everyone understands this, and will respect these precautions, as
I'm sure you will.
Tuesday I am
being seen as an outpatient by Dr. Minden. The fungal pneumonia has
cleared up with only a few small lesions remaining, which are
apparently nothing to worry about at this point. My third phase of
chemo ( the intensification phase ) has been delayed about two weeks
due to my lung problems and the oral Itraconazol and the Glivec are
not compatible. I'll keep you posted.
My recovery over
the last week and a half, has been miraculous. I had been feeling
depressed, and wanted to do nothing but sleep all day, because I was
missing my family and friends so much. Ever since I spoke out, I
immediately felt some relief and began to turn around the day I was
able to see my first visitor after 15 days. That is why you are ALL
so important to me !!! I need each and every one of you...I am so
blessed to have everyone who has supported me and kept me in their
thoughts.
Wish me lots of
luck at home, and over the next round of chemo, whenever that
starts.
April 15
Happy 21st Birthday
baby cousin Alicia !!!
I slept well from
11 p.m. to 6 a.m. but forced myself to lay in bed and rest until 7
a.m. and then I got up and started playing. Yesterday I received the
best care package from Tracey M. it included the following fun stuff.
Two mud masks, nail polish, remover and emery boards, yummy cereal
bars, Riesen candies, Looney Toons playing cards, People magazine and
a puzzle book, and the best part......a sun catcher for me to paint,
AND a Play-doh set, to make a bug. The box
said it's for 3 plus...I think it was a mistake, it should be 35 plus.
Even then my dad and I tried for an hour to reproduce the bug on the
box, and we both failed miserably. It ended up looking like a
windshield spattered bug!
Good news!!!! I
have been told that I get to go HOME tomorrow!!!!!!!!! Couldn't
have done it without you guys.
I had a blood
transfusion today to top me up till I come back on Tuesday as an
OUTPATIENT!!!! Yeaaahhhh! They stopped my IV Caspofungin and I'm on
oral anti-fungal drugs only.
Hb 87 Plt
277 Leuk 20 Neut unknown
April 9, 2003
Happy Birthday John...I hope it's a
good one! I awoke feeling physically okay, but was an emotional basket
case ( just ask my sisters, husband, brothers
in law, and parents ) I need my family and friends ! I miss my family
terribly, I haven't seen anyone in 12 days.
I'm going crazy and WAS losing faith. Thanks to my family and friends,
an interview was arranged with City Pulse through the window via cell
phone and I was able to vent my frustrations to the public. Look for me
on City TV on April 10th at 6:00 p.m.
I'M BACK
!!!!!!!!!!!!!! ( wink )
HB 97 Plt
163 Leuk 2.1 Neut
0.5
April 8, 2003
Had a terrible day.
Was sick immediately after breakfast. I
literally slept all day and all night, only waking when the phone rang
until I got smart and turned the phone off ( no
offence folks! ) I was sooooo out of
it !!!!!
HB 91
Plt 118
Leuk 2.4 Neut 0.7
Much Love,
Heidi
April 7, 2003
Had a terrible
sleep last night.
Didn't fall asleep till 3:00 a.m. I tossed and turned all night.
I think aside from leukemia, I also suffer from restless leg syndrome
( it IS real )
The good news is after my long talk
with my Dad # 2 from 1:15 a.m. till 2:00
a.m., I planned lots of home renos for
Chris. Throughout the day I did some walking and some socializing with
some other patients after dinner.
HB 95
Plt. 66
Leuk 3.1 Neut 1.0
Much Love, Heidi
April
6/03
Slept ok but awoke at
6am with another major nose bleed. I felt sick in the morning but
a shower I felt better and ended up having a pretty good day.
Thanks to Sandra S. and Deanna W. (friends and employee at PMH)
I got some clean clothes today. Sheri, Grant and our nephew
Dalton came to visit today. They parked in the rear parking lot, got out
of the car and phoned me from their cell phone. So we chatted for
15
mins. and I was
able to see them through my window. Dalton entertained my doing
the Macarena-- he's good! And I entertained them with a "full
moon"! I was trying for a "pressed ham" but my IV lines were long
enough. I also spent some time socializing with the other inmates.
Today's counts:
Hb 95
Plt 72 Leuk
1.8 Neut 0.5
More later, if keep feeling
this good then I'll try to stay more up-to-date. We still haven't
got word when the visitor ban will end!
Much love to all,
Heidi
April 5/03
Still got sick but slept o.k.
I'm getting very restless. I really need to get home soon.
I'm going crazy and my nose is still bleeding. Dr.
Messener came to visit me today, to see how I am doing physically
and mentally! It was a nice visit.
Today's counts:
Hb 100
Plt 79 Neut
0.3 Leuk 1.8
April 4/03
No radiation today,
I'm all done. But I still got sick today. I've heard it
would take a few days before the effects of the radiation disappear. I
also got a major nose bleed which took almost 1 hour to stop. It's
just due to dryness.
Today’s counts:
Hb 97
Plt 71
Leuk 0.7 Neut 1.7
April 3/03
Thank goodness!
My last day of radiation. Got
pretty sick in the
afternoon. Not
feeling great!
Hb 102
Plt 74
Leuk 1.9 Neut 0.9
Take care all!!
Heidi
April 2/03
Awoke with a head
ache and felt nauseous all day. I refused radiation at 8:30am and
at 1:20pm because they didn't prepare me with
stemitol. Had radiation around 3pm after taking
stemitol but sick after anyway.
Hb 112
Plt 54 Leuk
2.7 Neut 1.0
Much love,
Heidi
April 1/03
Happy April Fools
Day!! Hope it was filled with lots jokes and trickery! I awoke
feeling ok but after radiation (about 2 hours later). I started to
feel very tired and nauseous. I was given
stemitol (anti-sickness) and was very tired. I napped
during the day and couldn't keep my eyes open in the evening.
Went to bed around
8:00p.m.
Had morphine for my head ache and
gravol also anti-sickness.
Overall I slept ok but had muscle spasms again.
Today's counts:
Hb 111
Plt 6.3
Leuk 1.1 Neut 0.4
k 4.3
Creat 135
Have a great day,
love to all!!
Heidi
March 30, 2003
I woke and still
have some pain in the lower left abdomen just under the ribs, but no
pain relievers were required. I had an ultrasound done on my legs
and right arm to rule out the possibility of a thrombosis, which could
cause
a embolism in the lung, which could be
causing the pain. The ultrasound results were clear.
Otherwise I'm bored, tired and I need meat. I can't eat the
hospital food.
Everyone have a
great day and I hope to see everyone within the next few weeks.
Much love, Heidi.
Today's counts:
HB 86
PLT 98
Leuk 1.7
Neut 0.6
March 29, 2003
I slept o.k., but I
woke at 7:00 a.m. to do some exercises because I was getting stiff and
sore and then went back to sleep. Under my ribs are very sore,
especially when I take a deep breath. My appetite isn't that
great, but I am forcing myself to eat a little. I just can't stand
the hospital food. The pain in my ribs has gotten worse and I have
had to take morphine a few times to ease the pain. An EKG was done
and again the results were normal. I personally think it's a
severe muscle spasm, but no one will listen. The pain continued
throughout the day and into the night. Also, we were advised today
no visitors for 10 days,
ahhhhhhh!
Today's counts:
HB 87
PLT 127 Leuk 1.8
Neut 0.5
March 28, 2003
I woke feeling
better today, still feel weak and a little nauseous, but not too bad.
I delayed radiation until the afternoon so that they could give me an
anti-nausea drug first. My nose bleed is still persistent, but
just a slight drip. I had a CT Scan
done on my sinuses today and the results were normal. The last CT
Scan I had on my chest was not completely clear yet, so I am continuing
with the I-V anti fungal drugs. As usual my back is still sore,
but otherwise o.k.
Today's counts:
HB 91
PLT 144 Leuk
2.6
Neut 0.9
March 27, 2003
Had radiation again
today at 8:30 a.m. and a lumbar puncture at approximately 2:00 p.m.
Cathy spent the day with me since I had to stay laying flat for 4 hours
following the lumbar puncture. I had a bad headache and the lumbar
puncture site is very tender, not to mention the muscle spasm in my rib
cage (wouldn't have been so bad if Cathy didn't keep me laughing).
After Cathy left, about
4:30 p.m.
I became nauseous and started vomiting which continued until about 11:00
p.m. My nose continued to bleed most of the day. They gave
me platelets last night to help with the nosebleed. My friend
Leanne, from work, came at 4:30 p.m. and stayed until midnight.
She was a real trooper, Queen of my barf bucket and all. I was
unable to take nighttime meds as I was too sick.
HB 88
PLT 116 Leuk 2.4
Neut 1.3 K 3.1
March 26, 2003
Again had trouble
waking up this morning, I was so tired. I had radiation again
today and nausea most of the day, but not vomiting. I didn't have
much of an appetite. I had a headache with back pain all day.
I had a minor nose bleed, like a constant drip most of the day. I
seem to have some tenderness in my jaw area. I asked the doctor to
discontinue the
Celebrex because it's not effective and
causes upset stomach.
HB 98
PLT 205 Leuk 1.8
Neut 0.9 K 3.8
Creat 106
March 25, 2003
I slept soundly
last night but was still tired when I awoke at 8:30 a.m. My
radiation started today, it was painless but creepy. They strapped
the mask to the table to hold your head in place and it fits very snug.
Became sick to my stomach in the afternoon, which is likely due to the
radiation which causes swelling in the brain.
HB 95
PLT 166 Leuk 2.9
Neut 0.9 K 3.4
Creat 142
March 24, 2003
I did some
stretches for my back before I went to bed last night and it seemed to
help, but again I awoke with the nausea. My message therapist came
from
Whitby
today which helped to relieve some of the backache. Tracey,
Dalton, Tyler and Jordyn and Chris came to
visit and we ate pizza and as usual, my Uncle Calvin came and read to me
after the others left. I had a lumbar puncture today and received
1 unit of blood.
HB 80
PLT 209
Leuk 3.5
Neut 1.9 K 2.8 Creat
170
March 22, 2003
I had a pretty good
sleep last night. Sherry stayed with me and rubbed my back until I
fell asleep. My back is still pretty sore and they prescribed
Celebrex. The on-call doctor is a nice
guy and seems to listen to what I have to say. I have been feeling
a little bit of nausea and it seems to come and go. My friend
Vivien came, she is a registered massage therapist,
she gave me a great massage.
HB 89
PLT 234
Luk 4.8
Neut 2.9 K 3.2 Creat
115
12 years ago today of
prostate cancer. I guess he is up there guarding me and keeping me
strong. I slept fairly well after the massage, but I awoke with
the usual lower back pain. My appetite is not great this morning
because I feel nauseous again. Overall didn't feel great today.
HB 86
PLT 213 Leuk 4.5
Neut 2.5 K 3.2
Creat 144 (a bit high)
March 21/03
Sylvia left around 12:30 p.m. to
donate platelets…. 3 cheers for Sylvia! Cathy arrived and spent
the day with me. I was nauseated most of the day unfortunately but
still managed to force myself to each lunch and dinner. Likely
because it was supplied by my Mom and was not hospital food. It
was delicious…. Thanks Mom!!! Cathy and I watched the video again.
Chris, Sheri and Grant came (they enjoyed Mom’s cooking with me) and
guess what…. We watched the video again!!! Sheri put me to
bed with some hugs, and a light massage. I didn’t even hear them
leave. I had great sleep as a result. Sheri to the
rescue again!!! Thanks Sher!!!
Today’s counts: Hb 93
Plt 227 Leuk 4.0 Neut 3.0 K 2.9 (low need
potassium IV today) Creatinin 114 - still taking ampho.
Note: I asked my Dr. when she would
do a follow-up CT Scan on my lungs. She advised that in order to
see any remarkable changes we should wait probably until end of this
week or perhaps even next week…. I was afraid to ask if she meant as an
in or an out-patient. I’m guessing I’ll be here for at least
another 7 days!!!
Take care everyone. If you
can’t be good be careful! And try to keep the sniffles away!
Love and friendship to all,
Heidi
March 20/03
I awoke feeling nauseous this
morning but it eventually went away in the afternoon. I had a
lumbar puncture (L.P.) this morning. Spinal fluid is removed and
replaced with chemo. I find the procedure relatively painless but
it’s inconvenient because you can’t move for 4 hours to avoid developing
raging headaches that apparently last for days. So it’s nice to a
slave or a family member with you to get this and that and to keep you
company. Dars, Rose, Bob and Alene came in shifts to help me out….
Thanks guys and gals! My arms are very sore and my right wrist is
swollen, I think I pushed it when I was given physio for my upper body.
My fingers and especially my toes keep getting very cold and numb, just
like I’ve been out in the cold weather for hours. It’s caused by
one of the chemo drugs, vincristine. Alene warmed them up for me
with her hands and got my hot water bottle ready for me. Sylvia stayed
the night with me and I ate too much popcorn while we watched the video
from March 8/03 at Pleasure Valley. Wow…. It was hard for me not
to get emotional. But I certainly felt everyone’s presence and
love! Thank you all again!!!
March 19/03
Welcome to war! - God
Bless the innocent!
I’m very tired and lazy today.
I did a lot of exercise yesterday including having a shower all by
myself, something that until recently I’ve always taken for granted!
I had a Reiki session today. Something a little different but I
enjoyed it. Chris didn’t come tonight, he’s at home suffering from
a head cold, ‘tis the season I guess. I still have the chest
pain/discomfort and unfortunately it, along with my lower back pain
affects my sleep.
Today’s counts: Hb 92 Plt 214
Leuk 5.5 Neut 4.0
March 18/03
Happy Birthday Sandy!!!! (my oldest
“sister”). All is well today. My upper body (ribs
and/or lungs) are very sore and have been for a while now! Again….
I know, be patient!
Today’s counts: Hb 83
Plt 203 Leuk6.3 Neut 5.0 K 3.4
Creatinin 127
As you can see, the chemo I had last
Sat. causing some of my blood counts to drop (which is to be expected).
I received a blood transfusion today (1 unit) and my creatinin is coming
down which is good news.
March 17/03
I had a 9:30 a.m. in the ocular
clinic this morning. I had a follow-up visual field test.
There is a huge improvement and my vision thankfully is almost fully
restored. The doctor did say that there will still be some minor
vision and memory problems that linger and could take as long as 1 yr to
completely heal but that within a few weeks I should be mostly back to
normal!! (whatever that was?) My lungs are sounding much
clearer and the Dr. can clearly hear good air intake. The
physiotherapist was in to see me and gave me some leg exercises to do
while in bed to get my muscles moving again and build up some strength.
It’s amazing how quickly your muscles become weak and start to
deteriorate!! I’ve been advised that the rehab process for my
muscles and lungs will be a long one and I am to be patient.
That’s hard to do, especially when you start to feel better!
Today’s counts: Hb 86
Plt 184 Leuk 6.3 Neut 5.0 K
3.3 Creatinin 169 – again high but will flush me with
lots of IV saline and I have to drink tons of water…. Ampho will be
continued today!
March 16/03
I had lots of visitors today and as
a result was very tired at the end of the day. My oxygen levels in
my blood are slowly improving and my breathing is also getting better.
I went for 2 very short walks today…it’s a start! My legs and arms
feel like rubber and my vision gets a little scrambled when my pulse
goes up too high but like I said, it’s a start!
Today’s counts: Hb 99 Plt 178
Leuk 10.3 Neut 8.2 K 3.5 Creatinin 139 (this is
getting high but my Dr. wants me to continue on the amphoterasin for my
lungs as she feels it’s more important to rid me of the fungal infection
at this point!) Note: amphoterasin is an anti-fungal drug
the is very strong and effective for fungal infections but must be taken
over a course of at least 10 – 14 days regularly. It is very hard
on the kidney’s which is why they monitor the creatinin levels so
closely. If it gets too high then they are forced to stop the
amphotersin.
March 15/03
I’ve been very emotional the last
little while, likely because I haven’t had much sleep lately. I
have some pain in the left side of my chest, it’s likely muscular.
Breathing better but still short of breath with too much activity.
Dr. Minden said I’m starting chemo today – vincristine, amsacrine
(instead of doxorubicin because they don’t have the results of my echo
cardiograph yet so he wants to be safe). They will do a MUGA (I
don’t know a heart ultrasound or something) before my next round of
chemo. Chris and Alannah came to visit and Billy and Irena dropped
off Jenna and brought Jackie and Kelly for a visit. It was really
nice to have Billy & Irena visit. And of course great to see the
kids!!!! Jenna… the creative one, made me the most wonderful
collage of all the girls – Jenna, Kristine, Alannah, Jackie and Kelly
and Chris and the Roxy and Crysta too!!! It’s beautiful, a priceless
gift that I’m very proud of and show off to all the nurses, doctors and
visitors!!!!
Today’s counts:
Hb 95 Plt 171
Leuk 13.5 Neut 10.0 K 3.6
Creat. 123 (getting a little high, they will monitor closely).
Please everyone keep well!
Take care and with any luck I’ll be home in a week or so.
March 14/03
Fell asleep about 1am last night but
had to take ½ clonazepam and 1 Adivan. Sylvia stayed the night
with me. It was great! I always seem to sleep better when
someone is with me. I slept soundly from 1am to 6:30 a.m. and then
cat napped until 7:30 a.m. Feel great this morning. My
breathing is good today! My tummy is still sore though. Dr.
Anna said my chest is getting clearer but I still need to take the
amphoterasin (anti-fungal) for a few more days until the fungal
infection clears up entirely. My sisters Tracey and Sandy came to
visit for a little while. Then Chris came to visit and we had
great Chinese food together. It was really nice! Then
Uncle Calvin came and re-reviewed my protocol together as a refresher.
Stephanie my relaxation therapist came and she also gave me some arm
exercises to do. I also had a blood transfusion today.
Today’s counts:
Hb 83 Plt 169 Leuk 12.4
Neut 9.4 K (unknown) Creatinin 114 (a little high)
Otherwise all is well! Take
care everyone.
Love to all,
March 13/03
I have been having trouble sleeping
lately. It is due to the amount of steroids that I am taking not to
mention the back pain and chest pain. I think I fell asleep last night
around 1am. Dr. Elliot called and said she will re-asses my Zoloft 9
(anti-depressant) and clonazepam (sleeping pill) later this week. My
mind keeps racing at night thinking about family and friends, wondering
how everyone’s doing and trying to figure out how I could possibly thank
everyone for all they have done. This morning my body is very sore
especially my lower back and I’m getting muscle spasms in my sides. Good
news! My breathing is improving. I went without oxygen from 8am-9am
while lying in bed. However, my oxygen still drops with any activity.
Tomorrow Dr. Minden will decide if I should resume chemo or not. A
physiotherapist finally came to see me and gave me some exercises to do
in bed for my legs. I can’t believe how weak they are it will take some
time. My Uncle Calvin’s friend Ann came and did reiki healing with me
for an hour. It’s very different but it was very energizing and at the
same time relaxing. They have begun decreasing my steroids, which will
help reduce my water retention and bloating. Hope all is well with
everyone. Take care and dress accordingly with this crazy weather so you
don’t get sick.
Today’s counts Hb 84
Plt 134 Leuk 11.7 Neut 9.0
(k) Potassium 3.5 (norm about 4)
Creatinin 109 (norm 100)
March 12/03
Feeling even better and stronger today my eyes are
even a little better to. Had a chest x-ray and CT scan today. Will keep
everyone posted on results. No headache today. Stomach still sore and
distended.
Can now last about 10 minutes without oxygen.
Today’s Counts
HB –86 PLT – 141 Leuk – 9.2 Neut
– 6.1
Keep smiling everyone.
Much love
Heidi
March 11/03
Feeling better my eyes have gotten a bit better.
The eye doctor said (based on the MRI) that there is eschemia (death of
tissues) in various parts of my brain, which was due to a lack of
oxygen. He does not know if it will get better but does not think it
will get worse. He is full of cucu. I know it is getting better because
I can see better it is healing. I am not accepting any negative thoughts
from anyone including Doctors and Nurses. Had an Echo Cardiogram today,
results pending.
Today’s counts
HB – 90 PLT – 140 Leuk- 9.4
Neut 6.5
Found out about John, I understand but wasn’t happy
they kept it from me. John you better get better soon.
Much Love
Heidi
Friday March 7, 2003 – Monday March 10, 2003
Sorry for the delay in updates but it’s been a
crazy weekend. Friday while Chris was here I suffered from respiratory
distress again; otherwise Friday was a good day. Saturday morning Chris
and my dad came to visit, and in the evening Monica, Guy, Jackie, and
Kelly came to see me. Monica brought me a Big Mac and it was the best
one ever! I was so happy to have time with Jackie and Kelly, they
snuggled with me while I chatted with their mom. Dr. Ron Sperber came to
visit just as they were leaving and I forced him to take me for a short
walk. Unfortunately I ended up in respiratory distress again. While
everyone was partying they were getting ready to take me to ICU again (hehe).
They got my breathing under control without sending me to ICU. Thanks
Ron for staying with me and keeping me company during that stressful
time. My doctors think it was partly due to fluid build up on my lungs,
and they put me on a diuretic, which seemed to ease my breathing. After
Saturday night my right arm became weak and palsied, however after
Vivian my friend, and massage therapist, massaged my back and shoulders
it got better. I am a little distressed about my vision as it has become
impaired the reason is still pending – I’ll make sure to keep everyone
posted. I spent most of Monday in various clinics within the hospital;
in the morning I was fitted for my radiation mask (in preparation for
cranial radiation) and most of the afternoon I was in the ocular clinic
trying to sort out the issue with my vision. They have an MRI scheduled
for as soon as possible. Otherwise spirits are still up, it’s been a
little tougher but I keep smiling, that’s all I can do.
I hope everyone in attendance on Saturday night had
a great time - I will never be able to thank you all enough for
relieving some of my stress. You’re all wonderful. Keep sending me good
thoughts – they are working.
Much love,
Heidi.
P.S. So far my counts have been excellent, the
leukemia is under control it’s just my damn brain and lungs that are not
working!!
March 06
Had a good sleep last night with
some night sweats but not to bad. Yesterday I had a CT scan on my lungs
and a chest X-ray. One Doctor is convinced it is a fungal infection in
my lungs and it looks like a snowstorm because the white blood cells are
invading the fungus and trying to fight it. This is similar to the
previous explanation but not discounting the fungus. I had an abdominal
ultrasound and a bone marrow test today. All results will be reviewed
tomorrow. Sherri and my dad visited today and I did a total of 2 laps
around the nurse’s station. Any exertion still effects my oxygen
saturation but at least I am slightly ambulatory now.
Today’s counts
HB – 93 PLT – 310 Lueks
– 15.4 Neut - ?
Keep smiling I know I am how could I
ever stop with all of you out there supporting me. I am a VERY lucky
women!
Love to all
Heidi
March 05
This was intended to be treatment
day 28, my last day of treatment for the induction faze which would have
included a lumbar puncture and a bone marrow test. However, given the
recent minor setback the LP and BM may be delayed a few days. As it
turned out the doctors have no definite explanation from my shortness of
breath. I have been told by my family that Thursday to Saturday was
quite an experience for them! I don’t remember much except the cute
ambulance driver-but then again I was delusional from lack of oxygen and
heavily sedated. I also have one brief recollection of opening my eyes
on Friday, seeing Tracy and grabbing her beautiful curly hair. All of
the test results on my lungs through the Broncoscopy were negative. They
are continuing to treat me with antibiotics, antibacterial agents and
antifungal drugs as a prophylactic measure. The doctors are now
speculating that the breathing problem is due to a pooling of white
blood cells on the bronchial tubes in the lungs.( the fine capillaries
that absorb the oxygen in your lungs) Therefore the WBC are suffocating
the bronchia and only forced air can pass into the lungs. Something like
blowing air into a balloon. Since Saturday I have been progressively
getting better! This morning I was able to sit up by myself and last
night Chris and Cathy helped me take about 25 steps. There is still a
significant drop in oxygen when I exert myself but I have been assured
that the recovery process is a long one which requires plenty of rest
and God forbid not to much talking – Yikes that’s like asking a women
pmsing not to be moody! Ha ha ha. My counts were great yesterday
HB 80 PLT 262 LUK 10.3
NEUT 4.17
Had a blood transfusion yesterday
and had a much better sleep last night at PMH then I did at ICU at Mount
Siani. Night sweats were annoying as usual but at
least I had air! Anyway, I thought I would dictate today’s message early
just for the FYI, tomorrow I will tell you about the rest of my day
since its only 8:00 a.m.
Lastly, I received a beautiful
e-mail from Ginelle, a young girl with Leukemia. Ginelle if you are
reading this I will e-mail you when I am healthy enough to do so. Until
then you will be in my thoughts and prayers every moment. Let’s keep
smiling little one and never ever give up hope.
Much Love,
Heidi
March 4, 2003
The staff at Mount
Sinai is preparing Heidi for her transfer to Princess Margaret
Hospital. She has just been told that this transfer will take place
sometime this afternoon. Heidi had a good nights rest and is eating
solid foods again. Her recovery from pneumonia is on schedule and her
doctors are pleased with her progress so far. Her visitor and phone
call restrictions are still in place.
March 3, 2003
As of
1:00 p.m. on Monday Heidi is still in intensive care at Mount Sinai
Hospital. She is expected to be moved back to Princess Margaret in the
next couple of days. The treatment she is receiving for her pneumonia is
working and her condition is gradually improving.
*URGENT UPDATE* February 28, 2003
On Thursday evening Heidi was rushed to Oshawa
General Hospital and is in intensive care. She was having great
difficulty breathing and has since been diagnosed with having pneumonia,
a common complication after chemotherapy.
Many of her family and friends spent the night by her side and I’m happy
to report, having just spoken to my brother Chris that she seems to be
making some progress. They have just hooked Heidi up to a different
machine and Chris says that this new machine seems to be making her more
comfortable. I think that at this time all the rest of us can do is say
a prayer and ask that Heidi finds the strength to fight this latest
challenge.
February 28 - 2:00PM
Heidi was
transferred to Mount Sinai Hospital, where she will be admitted and held
in the intensive care unit for further treatment to stabilize the
pneumonia.
Feb.
26/03 - Treatment day 21
Had a good sleep last
night, I guess I was exhausted! I awoke a little shaky but
otherwise ok. Still have a great appetite! I went to the
Look Good, Feel Good Program at the hospital. It was a great
program! It's a not-for-profit organization with over 60 locations
world wide. They even have an 18 wheeler that travels to remote
parts to give women a chance to experience the program! They teach
you how to care for your skin after/during chemo and about applying
cosmetics to make you look healthy and like you have eye brows and eye
lashes! I received a big package of cosmetics and skin care
products. It was a lot of fun. They also educated us about
the different types of wigs and how to care for them. I'm going to
make an appt for a wig appt. Maybe I should get one for Tracey
too! Well I'm going home today. I feel better about it now,
Deanne Weeks a friend and Leukemia Research Fund, Durham board member
came to see me. She has been a nurse dealing with leukemia
patients for about 20 years and she lives in Oshawa about 5 minutes from
me. She has told me to call her any time night or day if I have
any problems... and believe me she knows what she's doing!
So... thank you Deanna for making my trip home more comfortable.
Today’s counts:
Hb 95 Plt 114 Leuk 6.6 Neut 3.4
As you can see some
counts have gone up but my neuts have gone down a bit. Apparently
that's ok. I'm no longer on a low microbial diet, unless my counts
go down. I'm even allowed one glass of wine when I get home.
But just one because of all the meds.
More tomorrow!
Have a great day!
Love, Heidi
Feb.
25, 2003 - Treatment day 20
I had lower back pain
and chest pain which continued throughout the night. I didn't fall
asleep until about 3am. Thanks to my favorite roommate! God
Bless her! Sandy got up at 3am to give me a back rub! I fell
asleep while she was with me which I was thankful for! After that
I slept fitfully throughout the remainder of the night. Took
codine again at 6:00am for pain and oddly it made my teeth sensitive - I
think the chemo's affecting my brain -- I'm delusional. Haha!
I let the pain meds
wear off to determine if the pain is still present... it was but a
little better. Overall an ok day!
Today's counts: Hb 91
Plt 77 Leuk 7.0 Neut 4.1
As you can see my
counts are coming back up which is a good thing, it means my marrow is
producing it's own healthy cells. However, there is likely still the
presence of Blasts (bad white cells) in the marrow which is what's
causing the bone pain. I am the miracle patient getting those
counts up so fast... yeah me! I know it's from all the love and
support I've received from everyone... it's very sustaining and
uplifting! Sandy I'm happy to say is on the mend and almost back
on solid food again. I think today's meals consist of jello, soup
and juice! Tomorrow she can start on crackers hopefully.
See you later!
Take care everyone!
Love, Heidi
i
The following dates are the beginning of
Heidi's treatment schedule!
February 12, 2003 Day 7:
I
started my treatment on Day -2 and will last until Day 28. I will
receive Glivec daily (pill form). My first dose of chemo was
Vincristine Sulfate Injection into my IV line and Doxorubicin Injection
which takes about 20 mins to inject into my IV line on Day 0.
Day 1 - Doxorubicin and a lumbar puncture (remove spinal fluid & inject
chemo), Day 2 - Methotrexate given via IV - high dose chemo which 36 hrs
later they administer Folinic Acid rescue to bring the Methotrexate
levels in the blood down to 0.1 to minimize kidney, liver and other
tissue damage. Day 3 (that was the Folinic Acid Rescue). Day 4 -
L'asparaginase, an intra muscular injection... where? you've got
it... one in each cheek ( and I don't mean my face!). Day 5 & 6 no
chemo, Day 7 Vincristine which I'll get weekly until my discharge!
So
far the side effects are minor... a sore mouth, shaky in the morning,
great appetite, a little shortness of breath and some fatigue (although
minor so far). I spend more time in washroom than anywhere else
because they keep you so well hydrated it's enough to wish you were
male! Scary eh! Doctors, Nurses, staff are like angels!
My view isn't the greatest, the metal sculputures outside my window look
like muscle skeletons in pain.... hhmm!
Blood counts: X1000 per ml of blood
Hb
(Haemoglobin ie/ red blood cells) 98 (norm is about 132 for me)
Leuk (Leukocytes ie/ white blood cells) 1.0 (norm is about 5 to 19)
Plt (platelets ie/ blod clotting cells) 14 (norm is 150)
Neut (Neutrophils - white blood infection fighting cells 0.00 (norm is
about 3.5 for me)
Looks grim... but it's partially the disease and soon will be the
effects of the chemo ( a good thing!).
I
had a terrible sleep last night, but at 6am my roommate got up and sat
on bed and rubbed my calves and feet... how sweet is she! I got a
little sleep then.
Take care & good health everyone!
Til tomorrow,
Heidi
Feb 13
Hb
106 Plt 12 Lk 1.0 Neut 0.0
Yesterday I was tired but had slow day for visitors... my mom came with
our friend Cathie who's daughter is a good friend of Alannah's and has
been sooo helpful with Alannah!!! My friend Malvia also came &
brought me a nice cozy blanket and finally... a nice pillow. I
slept quite well last night and has made me feel much better this
morning. Leanne (a co-worker turned good friend) brought a movie
here last night and it was very relaxing. She's going to come
every Thursday night for movie night with me!!!
My
appetite is still good. I may get platelets today, I'll let
everyone know tomorrow. So far today (10am) I'm feeling pretty
good, slight nausea but not much & NO Head Ache!! yeah! I
was hoping to get my hair cut today when my sister-in-law Cathy gets
here but I can't get an appt... do I really want to spend $42.50 on a
hair cut that will only last another week or two tops!! My own
hairdresser, Cindy from C.C. may be able to come this weekend to cut
it... what a sweetheart. She always reminds me of Speedy
Gonzales... never stops & is a speed demon!
I
don't have my counts yet for today but will update in the morning.
Happy Valentine's Day to everyone! Enjoy it and spend time with
those you love today and everyday!!!
Heidi
Feb 15/03 - treatment Day 10
Happy Anniversary Mom & Dad. I wish I could be with you
celebrate! Soon I'm sure!
Had a terrible sleep last night. My mouth sores have started and I
do hate to complain but damn they hurt. Raw open "cankers" under
my tongue on the back of throat. It got a little better throughout
the day and I forced myself to eat, but by dinner I had tears in my eyes
while trying to eat! I'll have to order lots of soup over the next
few days. Visitors: Karen brought Alannah to see me and Al
and I had some time to ourselves. It was nice to cuddle up with
her on my bed... I miss that soo much! My hairdresser, Cindy & our
friend Gail also came by. I can't believe they made it here in one
piece.... crazy girls they are. They certainly brightened my day.
Cindy cut my hair very short in preparation for the upcoming hair loss I
keep hearing about.
They left around 4 and Al around 5:30pm. I thought I was done for
visitors for the day but then my faithful, charming Uncle Calvin came
for his visit! After he left I got a wonderful surprise! My
extend family Cathy, Patricia and Brittany showed up! It was soo
good to see them, I couldn't believe they were here! Cathy coming
all the way downtown to the big city from farm country
Peterborough,
scared out of her wits by Pat's speedy driving. I think it was a
mini adventure! Thanks guys so much for surprising me, it was
awesome!
Today's counts: Hb 105 Leuk 1.1 Plt 48 Neut 0.0
Hope everyone had a great Saturday!
Love,
Heidi
Feb 16/03 - Treatment Day 11
My
mouth sores are very painful and to make matters worse I'm an eating
machine. I can't seem to get enough food but it hurts like hell to
eat! Talk about being in a pickle... ugh no...too painful.
I've lost a lot of my tastebuds so that's not much fun. So the
next time someones eating a great pasta dish, pot roast with potatoes
and gravy & vegs or a bbq steak with hot peppers and onions, call me and
describe every single flavour and taste sensation! I think I'm
obsessed....suddenly I love food way too much. Dars came to visit
during lunch today and I wanted to steal her lunch because mine came so
late! Meals for now consist of nutri-drinks, soup and maybe a
sandwich or toast soaked in my soup so I can eat it. Problem is,
the darn soup bowls are soooo small! I guess I'm not supposed to
want to eat. Had a great day! No visitors until 3pm when the
kids, Monica and Guy came for a great visit. I'm so thrilled she
brought them to see me and came with them! My Aunt & Uncle came as
the girls (& Guy - sorry) left and we had a nice visit. I was
tucked in and snuggled up with the new book Monica bought me by 10pm
(that's early here).
No
nausea or headaches...just a stupid super sore mouth and a growling
belly! Not too bad!
Counts:
Hb:
101 Plt: 28 Leuk:1.1 Neutrophils - they didn't
process in the lab so I don't know.
Guess I'll need another platelet transfusion soon... my guess is Feb
19... bets anyone?
Take care of yourselves out there and take care of each other!
Love,
Heidi
Feb 17/03 - Treatment day 12
I had a pretty good sleep last night, I took
something for the pain in my mouth because I figured a nights sleep will
do me some good. And it did. Other than my mouth I feel
great today. I've definately started losing my hair! What a
strange experience. I wonder if my dog feels that way every spring
when she sheds? Had great visits today! Dars joined me for
lunch, Alene took me walking (around in circles on the floor, but at
least it's some exercise), Chris was here for a short visit... he had to
get home so that the furnace could get fixed! When it rains
it pours as they say! And my evening was complete with a visit
from my Uncle Calvin who came bearing gifts.... distilled water, movies
and an earphone extension cord!!!! My roommate went home for the
night but will be back early morning. Her treatment is much
different so she may have the fortune of going back and forth!
Lucky lady.
Hopefully someone can arrange to have some warmer weather for me when I
leave in March. Can someone put in a good word? I can't
believe the stories I'm hearing about how cold these last few weeks have
been. Crazy weather!!!
I
will see you all sometime in the not to distant future. In the
mean time, take of yourselves and bundle up!
Love,
Heidi
Feb 18/03 update - Day 13
Counts: Hb 88 Plt 25 Leuk 0.8 Neut 0.0
Last nights sleep wasn't a great one. I thought it would have
been since my roommate was gone for the night but I was restless and
still my mouth is causing pain. I awoke early in preparation
for my call from Terry Johnston of AM1350. I talked to him
live on the radio about the upcoming blood donor clinics and the
importance of educating the public on the need for all blood
products including platelets and bone marrow. Oddly around 8am
I began to run a fever and was experiencing shortness of breath and
a burning in my chest. It continued for most of the day.
Thankfully I had a steady stream of visitors so that I had plenty of
one-on-one time with: My Dad, my Daughter, my Husband, in-laws Grant
& Alene and my Sheri. It's nice to have someone with you when
you're not feeling very well.
FYI - It's now 10:00am on Feb 19 & I feel remarkably better, nothing
a good burp won't solve!
Be safe, stay warm, be healthy and enjoy your day!
Love & good wishes to all,
Heidi
Feb
19/03 update - Treatment Day 14
Sheri stayed with me
last night, she slept in the recliner again. I must admit that I
do tend to sleep more restfully when she is here. Sandy my
roommate was also with us and we all seemed to sleep ok. My
mouth sores are still there and I struggled through breakfast. I
got smart and decided to take something for pain for lunch and dinner
because I'm still always hungry. I had pretty good day, I felt
good. I experienced some shortness of breath at about 10pm and
unfortunately called Chris and scared him half to death while trying
to catch my breath. Sorry babe! I just needed to hear your
voice!! My mouth started going a little numb with a white
coating over it, I was actually able to eat a few crackers.
I didn't get all of
my counts but my platelets were only 14 and I had to have a
transfusion before I could receive my weekly chemo, Vincrystine and I
also had a lumbar puncture which went well. Dr. Anna L. is amazing
and the procedure caused very little pain!
Visitors:
My Mom & friends Cathie and Heather, Sheri stayed for the day and
Grant dropped in when he came to pick her up, Liz from work had a
great visit with me...she brings sunshine when she walks into a room
she's so bubbly and my last visitor where my faithful Uncle Calvin and
Ma (my grandmother). Poor dear gets so upset when she sees me.
I wish she wouldn't feel so guilty being 81 and relatively healthy!
I don't think she realizes that I'm really doing ok!!
Well it's now 9:00
am Feb 20 - I had the room to myself last night until about 4:30am
when my roommate re-admitted herself early because she's not feeling
well. I didn't get much sleep after that but lets all say a
little prayer for her today. I feel good so far, my abdominal
and chest cavities are sore... a combo of gas, indigestion, and I
think too much lying around. I'll try to do some small exercises
today and stretch a bit. Well, have a good day everyone!
I hear it's a little warmer out there today. Hope so, I think
everyone's had enough of Jack Frost for this year! Keep on
smiling!!
Love,
Heidi
Feb. 21/03 - Treatment Day 16
Had a good sleep last night, but with
major nightsweats. I woke up at 8:00am with lots of energy and
with the dreaded trotts. About 9:00am I had terrible chest pain.
The doctor said its indigestion or a gas pain. WOW! Did it ever
hurt. What a suck eh?
Todays Counts: Hb 88 Plt 45
Leuk 1.0 Neut 0.2
Over all a good day. Hope everyone
has a great weekend. Take care!
Love,
Heidi
Feb 22/03 -Treatment
Day-17
Sleep was ok last night but with many
interruptions. Still got the trotts. Woke up at 5:00am
with another chest pain. Im really groggy this morning and my
lower abdomin is tender. I still have the mouth sores but at
least I can eat now. I always fell a heavy weight on my chest
especially when I lay down. This is caused by the fungal
infections on my lungs. I had a blood transfusion today.
All things considered I am doing very well. My spirts are still
high but I am getting anxious to go home. I am really missing my
family. I hear the weather is bad and I beg all of you to drive
safe and only if necessary.
Todays Counts: Hb 80 Plt 46
Leuk 1.3 Neut unknown
Love,
Heidi
Feb. 23/03
I had trouble falling asleep last night,
I am not sure why but I did have chest and stomach discomfort.
Still got the trotts. I am happy to report my roomate, Sandy is
felling much better. Her husband, Bart brought me a great
Scottish cam with crazy red hair. Sandy is mortified that I wore
it throughout the hospital today. Having a great day with only
three visitors. Unfortunatily, I have a terrible virus acquired
at the hospital which I may have passed on to many of you.
A computer virus that is. So sorry. It is currently on the mend,
so e-mail will be delayed. Hope everyone has a great Monday.
Tdays Counts: Hb 80 Plt 51
Leuk 2.4 Neut 0.8
Yah counts went up
Much love,
Heidi
Feb 24/03
Treatment Day 19
I had a good sleep last night even though I was very uncomfortable
due to severe night
sweats. Had to change about five times because I was soaked! My
lower back is
very sore, started yesterday but seems worse today. My chest is
still tight
and sore and I am experiencing some shortness of breath. My regular
doctor
is away this week and I am feeling some anxiety over being seen by a
doctor
I don’t know. The doctor is suggesting that I go home Wednesday or
Thursday.
I was uncomfortable
with this decision however, after a lengthy conversation with
Doctor Messener and Doctor Minden I feel more comfortable.
I am women hear me roar! I am a super Leukemia fighter! My
Doctors are
amazed that my counts are coming up so quickly. I did have a blood
transfusion today but otherwise all is good. My lower back and chest
pains
may be associated with overcrowding of cells in the bone marrow. My
Doctors
have suggested that I enjoy the time at home because over the next
40 weeks
I will be required
to visit the hospital for treatment 2 to 3 times a week and I still
have a long difficult road a ahead of me.
Keep well everyone I know all of your good wishes and thoughts have
helped
with my speedy recovery.
Todays Counts
Hb - 74 Plt - 62 leuk - 4.8 Neut - 2.9
Much Love
Heidi
P.S. My computer is still not available
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