I am very relieved and pleased to report that my blood test on Friday yielded good results. My hemoglobin count has risen from 109 to 119. This means that my marrow has continued producing red blood cells, even since last week's transfusion. The normal range for hemoglobin starts at 120, so my count of 119 is quite respectable indeed. In fact, my oncologist confessed that now my hemoglobin count is higher than hers! (I hope it stays high.) This recovery suggests that the original problem really was stomach bleeding, and it looks like the bleeding has been contained.
Further good news is that my platelet count has also increased from 97 to 115. When my oncologist told me this news, I could tell she was very relieved. (I sure was too.) She had been worried that my body was "eating" its own platelets. If this had been the case, my most recent platelet count would have been in the 40 to 60 range, so it is nice to see instead a higher number.
I still wonder why my platelets dropped in the first place. The doctor said that after a transplant, the platelet count can waver for some time. I am still taking a drug every night to contain the sharp headaches - amitriptyline. I did a bit of research on this drug, and I discovered that it can depress the bone marrow, resulting in low platelet counts, the blood blisters I have been observing all over my skin, and several other effects in the blood. I am told that these problems only emerge in high doses of amitriptyline, but I wonder if they might also appear in someone like me who has weakened bone marrow. In any case, for now I must continue taking the amitriptyline. I tried tapering my dose down, but the headaches immediately returned. On Tuesday I will be seeing the doctor who specializes in pain management, and hopefully she can suggest some other options.
The pain in my neck, back, and arm is still very intense. I have been experimenting with various prescription narcotics, but all of them have some drawback or another. I must say it is easier to enjoy life when the pain has been dulled, but I would be a really happy camper if the pain would just disappear all together. Soon, I hope that will be the case.
Last night, my brother Trevor came over with his buddy Steve, and my mom and her friend Angela came over as well. All of us, including Mark, went down to English Bay to watch another night of fireworks, courtesy of Spain. The show was spectacular! I think it may have been the best fireworks display I have ever seen. Over 300,000 people watched it from different points in Vancouver; most were watching from the downtown beaches, like us. I am so happy to be able to get out to enjoy events like these!
This morning, Mark and I wandered over to our neighbourhood Starbucks for coffee and scones. Occasionally we do that on a weekend, with a big fat newspaper in hand. We had a nice time, enjoying the sun and relaxing with no pressures or commitments to bog us down. On our way home, we crossed the street at a crosswalk. When we venture out these days, I often have to walk fairly slowly, to cushion my very sore neck from movement. Mark and I were crossing the street in that fashion, when the driver of a vehicle who had to stop and wait (for all of a few seconds) hollered "Gee, could you walk any slower?" I was really jarred by the sarcasm and anger in that comment. I felt like hollering back that I am dealing with the effects of cancer and a bone marrow transplant, but I realized that would be unlikely to achieve anything. I feel so frustrated when people judge me on the basis of appearance. All too often, people presume I am totally able-bodied, and they express anger at my apparent laziness or my slow pace. It is hard enough accepting my dependence and my weakened state; dealing with people's misplaced anger makes life even harder. I am lucky that the people I choose to have in my life, friends and family, are so much more tolerant and patient.
I wish I could report that I was finally pain-free, but that isn't so. The pain in my neck has gotten so intense that I wear a brace to help me hold up the weight of my head. I go to physio every day, and I hope we're making progress but it is hard to tell. Sometimes the pain is so intense that I feel like calling it quits. Those are desperate, illogical moments, and they pass fairly quickly. Nothing I take seems to help the pain, so it's quite difficult to cope. I am trying to be hopeful that a happier day will come, but this is some of the most intense pain I have ever dealt with and it is incessant. Some nights there is no way for me to lie that doesn't hurt. It's unbelievable that even the strongest of my pharmacy of drugs offer no help at all.
I was disappointed to miss out on a dinner out with friends last night. I hope that soon I have the physical strength and the emotional energy to hop back in the saddle. I am looking forward to days filled with fun. Poor Mark has to be my caretaker during these difficult times. He is so patient and loving.
I spend most of my days reading. I have just finished another book, called Here On Earth.. Reading has been a terrific distraction for me lately.
Things have come to a grinding halt around here, as the muscles in my neck have landed in a constant state of spasm. I have to wear a neck brace in the car (and even around the house sometimes), and it is pretty difficult to get myself up from a reclined position. Pain killers do not seem to help my discomfort much, and there doesn't seem to be an end in sight.
I have been seeing all kinds of doctors, but no one can explain why this is happening. On Friday, my beloved family doctor begged, pleaded, and succeeded in getting me an appointment (that same day!) at a pain clinic in North Van. The car ride there was excruciating, but I think the trip was worth the pain. The doctors there use medication, physio, chiropractic, acupuncture, massage, relaxation, and any other tools that might be useful in treating chronic pain. I was very impressed with my first visit (during which I had acupuncture done) and I will return for more treatment Monday and Tuesday. While I was there, I bumped into a colleague who has been undergoing treatment for pain there (I didn't even realize that until now), and she has been very happy with the results.
Poor Mark was my chauffeur yesterday when we rode over some railroad tracks, jarring my tender neck and causing very severe pain. Mark immediately pulled the car off onto a side-street where I screamed and bawled for what seemed like hours. It sure wasn't Mark's fault, but I know he felt badly for me. I felt very frustrated at that moment, for it seemed the only way I would be able to move from that spot was if an ambulance came to my rescue, securing my neck in every possible way. Fortunately, both Mark and I got brave enough to continue the rest of the ride home, with only one incident involving a rude individual who didn't appreciate our cautious speed. We had our vehicle's hazard lights on, but this individual decided to tailgate within inches of our rear bumper. When Mark waved the fellow past, he drove by our car, and rapidly veered into our lane without warning. His attempt at punishing us, I guess. If Mark hadn't quickly leaned into the lane beside us, we would certainly have been in an accident with this fellow. For the foreseeable future I will be venturing into cars only when absolutely necessary!
Here is a puzzle we haven't been able to figure out. Every night, around 8pm, hundreds and hundreds of black crows fly past our building, originating somewhere west of us (maybe English Bay or the west side) and aiming toward what looks like East Van or Burnaby. Does anyone have any idea where all these birds are going and why they are going there?? We guess they are heading off en mass to roost for the night, but it seems like strange behaviour to us!
Note: (August 22, 1998) Lots of folks were interested in my question about the crows in the last email I sent out! You can take a look at what I asked and what lots of people wrote back to me by clicking here. Thanks to everyone for the enthusiasm!
I just finished reading Into Thin Air by Jon Krakauer.
This book is a personal account of the 1996 disaster on
Mount Everest which cost many people
their lives, in spite of the fact that most were very experienced climbers.
The well-written and emotion-packed book
kept my undivided attention and caused me to weep repeatedly.
I felt saddened that the author remains guilt-ridden, to this day,
for failing to somehow avert deaths that were clearly beyond his
control. My view is that each individual on that mountain was there
by free-will and in full knowledge of the risks inherent. I am
deeply dismayed that Mr. Krakauer's conscience still remains burdened
by an outcome beyond his personal control.
I think I am fortunate to have read this book at this particular
time in my life.
Having spent the last year and a half battling cancer, having
endured a bone marrow transplant which brought me within a breath of
my life, and having spent all my days since that February transplant trying to
overcome one difficult complication after another, I have gained some
perspective. I am still in pain; I am unable to keep my head erect without
the aid of a brace; I cry regularly -- tears of self-pity and tears
in fear of an unknown future. But I have this moment ... I am lucky to
have at my fingertips countless conveniences that enhance my quality of
life. I have my full mental capacities, and I am unencumbered by obsessions
like what must have magnetically pulled many victims of that May 1996
Everest storm towards the summit. I am surrounded by loved ones like
my mother, brother, husband, and numerous friends. And I have the
cherished memory of a loving father.
All in all, I am very lucky, and my life is happy.
Although I know I will never climb Mount Everest myself, perhaps
each of us metaphorically climbs a mountain at some point in our lives.
Sometimes I wonder whether I have reached the summit, or whether
bigger challenges still lie ahead. That uncertainty will remain with me
for the rest of my days, so instead of worrying and wondering, I
must try to tread lightly on this earth, doing as little harm as possible,
and hopefully bringing a little sunshine into each day for myself and others.
Ah, to enjoy a day at home without a medically jam-packed schedule.
(Well, I do have a physio session
this afternoon, but I don't mind that so much.) The past week
has been so crazy, with appointment after appointment. Getting
around by car was next to impossible after the "railroad track
incident", but Mark came up with an ingenious reclined position
for me in the back seat of the Jeep which has made travel
much more bearable. It has been essential for me to do some
travelling daily to see different specialists; thank goodness
I can do so without incredible bursts of pain! Mark has been
very generous with his time, chauffeuring me all over the place and
spending hours in medical
waiting rooms all over the city, day after day.
The pain clinic I started attending last week hasn't provided
immediate results, but there is promise and hope. Mostly I have
been seeing different doctors there for assessment purposes.
I have had two acupuncture sessions with one doc (unfortunately
those sessions don't seem to be providing me with much relief).
Another doc prescribed a muscle relaxant
which doesn't seem to diminish my muscle spasms. I had a bit
of a personality clash with a third doctor - oops. (It's a long
story.) The massage
therapist and the physiotherapist I have seen at that clinic don't seem to be
any better than the local ones with whom I already have
established relationships, so the extra journey for those
pursuits doesn't seem worth my trouble. The aspects of that clinic
which show the most promise in my mind are biofeedback training
and possibly cortisone injections into muscular trigger points.
I will be looking into the biofeedback training, and the trigger point
injections can't be considered until after the CAT scan of my
neck comes back clear. (The scan is scheduled for Monday afternoon.)
Meanwhile, I have been seeing my local physiotherapist (Marge) on a daily
basis. I have found that when I relax before a session, Marge is able
to do much deeper work without triggering pain. So I usually arrive
at the clinic a little early for a lie-down! Over the past week,
Marge has been trying to deal with the severe spasms in my neck.
She thinks I might have over-extended myself about 10 days ago when
I walked down to English Bay to watch fire-works. (I was walking
and turning my head a lot more than I really should have been doing.)
Once all the acute neck spasms settle down, Marge can resume working
on the original problems which brought me to her: the
muscle spasms in my back, the overall stiffness of joints in my body,
and the overall weakness of muscles. It's a long road, but I'll
make my way.
It is frustrating watching August slip away from a reclined
position inside our apartment. I had visions of Mark and me doing
some travelling this month, or at least enjoying the local good
weather. Hopefully I will finally be back on my feet in the next
month or so.
Last week I underwent a bone density scan to assess my risk for
osteoporosis. (I am a high-risk candidate for the condition,
given my history with the steroid prednisone and given other
facts of my life.) It turns out I am "osteopenic" which means
I am more likely than most people to suffer
a fracture. I am particularly vulnerable for a broken hip,
so I think my family doc will be wanting to put me on some
bone-building drugs. This is all tied in with the hormone
replacement question, but I think I am fairly resolute in
my decision not to take estrogen. The risks are not outweighed
by the benefits, in my mind, especially given the availability
of drugs to strengthen bones. I am told that the bone medication
would only need to be taken for a week out of every three months,
and as far as I know the drugs are less harmful than estrogen
replacement. (I still have to investigate that a little further.)
Well, I spoke too soon. It turns out the doctor who
interpreted my bone density scan was mistaken about me being
"osteopenic". In fact I have full-blown osteoporosis! My family
doctor, Janet Franiek, called me in for a visit on Friday because
of her concern over the result, and she showed me the report.
Janet suspects that my prednisone intake over the past 6 or 8 months
is responsible for my bone degeneration, in which case
the condition may completely reverse
over time. For now I have to be really careful to avoid fractures,
however. A hip replacement is not a procedure I really need to
go through right now, so I will definitely be staying off my
rollerblades.
I am noticing over the past couple of days tiny improvements
in the condition of my neck. Although I still have trouble holding
up my head, and although I only have a couple of comfortable
positions for lying down, I am noticing a definite improvement
in range of motion. The pain is still pretty bad, but hopefully
that will lighten up over the coming week.
I am being careful to avoid over-extending myself right now. A
setback could cost me several more weeks on my back!
Last night my mom, my brother, and a family friend Angela came
over to watch home movies! I tracked down about 8 films from
when my brother and I were kids, and I had them converted to
video. It only translated to about 20 minutes of footage, but
it was so neat to watch! Seeing my brother as a two-year-old
and me as a ten-year-old, noticing how little my mom seems
to have aged, being reminded of the mannerisms
of my late dad ... Very fun stuff.
I just finished another great book,
The God of Small Things
by Arundhati Roy. What a pleasure.
Lately my level of pain and discomfort has put evil thoughts in
my head. As much as I am grateful for the gift of life, I have
wondered if it wouldn't be easier just to call it quits. Sometimes
I feel so much pain and I am so lacking in hope for the future that
I lose touch with my sensibilities. But then I remember how much
Mark loves me, I think what a wonderfully supportive community
of friends and family I have around me, I realize that even
in the midst of a painful day I can experience a moment of profound
joy ... I can't give up! I think I realized this tonight while
speaking on the phone to my late friend Russell's grieving wife.
Russell died almost a year ago, and his family is still stumbling
to find solid ground. They are relieved that Russell's pain has
ended, but they miss him deeply. The void left in my life by
people like Russell and Gayle reminds me to hold on to every
precious moment of life until there is truly no fight
left in my body.
I don't think I mentioned that my family doctor and I decided
to cancel the CAT scan that had been scheduled for Monday.
Although the pain in my back and neck remains, there no longer
seems to be such a puzzle about what is going on. No one really
knows why I am having such bad muscle spasms, but
the small degree of improvement has everyone convinced that nothing
sinister (like, say, cancer) is responsible. That's a big relief.
While the CAT scan could confirm that suspicion, it would be
costly in terms of time and energy. I am perfectly happy to avoid
another scan.
I am still going for physiotherapy every day, and it continues to
help. But boy does it hurt sometimes.
Tonight a couple of friends (since high school!) stopped by for
a visit, Shannon and Christina. We had meant to go out for dinner, a whole
bunch of us, but in the
end not everyone could make it so we cancelled. I was kind of
relieved because my neck and back aren't exactly up for a big
social evening out just yet. It sure was fun having Shannon and Christina
over for a while though. We had lots of laughs and vowed to plan a
"girls' weekend"
up at Whistler some time when we are all fit and able. I think
that would be a blast!
Today a package arrived from our friend Shelley in Chilliwack. (Several
years ago she sold us our precious kitty Macska.)
All kinds of seasonal fruits and veggies were contained within
(including a baby pumpkin, blackberries, tomatoes, and corn),
and plus she made some stuffed peppers for us. Yum!
I am lying about waiting for more improvement on my back
and neck condition. After yesterday's physiotherapy session
I felt pretty crummy, but then I had a fairly decent sleep
last night in spite of it all. Today I am feeling just run
down and a little discouraged that the recovery is taking
so long. Everyone who works on my muscles feels that progress
is coming and that the end of my pain should be just around
the corner. I hope so.
I have to keep in mind what an improvement even this state of
health is over my condition six months ago. The transplant was
hell on earth, and I have so much more freedom now than I did
back then. Just being able to get up to grab something (anything!)
from the fridge is a huge privilege. I hated the food restrictions
I faced in the hospital, and even worse was
having to ask someone else to venture out past the doorway of
my room to retrieve stuff for me. Having Mark by my side day and
night is such an improvement over the few hours we could share
during his hospital visits. Not pining over my cat from the
confinement of my hospital bed is a big improvement!
She is finally used to having me back around the house again.
(For a while there, she was actually preferring Mark's company!)
There are so many ways in which life is better now, but it is
hard not to be impatient all the same.
Wow, can life be ironic. Last night I was expressing my
gratitude for being free from the hospital. Not 24 hours
later, I found myself in a bed at St. Paul's Hospital
Emergency Ward ... Thankfully, I am back home again, but
it has been a draining day.
Today I noticed signs that my hemoglobin may be low. I was very
low in energy, I seemed pale, and I noticed signs that I might
be experiencing stomach bleeding. When I contacted my doctor
late in the day, she told me to get myself to the hospital.
She made a few calls ahead of my arrival, so the doctors
and admitting crew would be expecting me. She told me I would
likely end up spending the weekend in the hospital and I would
probably have an endoscopy tomorrow or on Monday. After a few hours
of poking and testing at the emergency ward, it was decided
that I could return home. My hemoglobin count was 98, lower than
normal, but not so low that I needed a transfusion.
I have to have my blood tested again in a couple of days to
keep track of where things go from here.
I am, once again, immensely grateful to be home and not
stuck in the hospital. But I am also very very eager to feel
strong again. I am so tired of being sick. I'm not supposed
to be a sick person! Right now this whole experience seems like a
mistake or a bad dream.
Here I am writing in the wee hours of Monday morning. I tried
getting to sleep over an hour ago, but that obviously didn't work.
I haven't had trouble sleeping since I came off prednisone a
few months ago, so this feels a little strange!
Tonight my back was bothering me a lot, so I
thought I would take a couple of pain-killers before turning
in for the night. Somehow, after only a few days of not taking
the pain-killers, I managed to forget how itchy these things
make me. So I have spent the last hour scratching like mad!
Ah well, sleep will come in due time ...
Earlier today my mom came by for a visit. We chattered while she
gently rubbed my feet to comfort me. I'm still constrained to spend
most of my time lying down, since sitting up any length of time
is too much of a strain on my neck. My mom lent me her
Thighmaster equipment, so that helps me stay relatively limber
even though I'm not on my feet much.
Tomorrow I plan on having my blood counts re-checked. I have also
got a physio appointment. Plus my friend Laura plans to come
by for a visit! That will be nice; I haven't seen her in ages.
My blood counts yesterday weren't too bad. Hemoglobin went up
by 2 to 100 (happily it didn't go down), and platelets went
down 6 to 119 (not really a big deal). I am convinced that the
amitriptyline I take for headaches is too hard on my bone marrow.
I have started to gently (and slowly!) wean myself off that drug.
Hopefully the headaches won't return as a result.
I felt so crummy yesterday that I had to cancel Laura's visit.
I think I'm coming down with a cold on top of everything else!
Coughing and sneezing are really hard on my sore back and neck.
My oncologist called me at home this morning because she was so
worried after receiving doctor reports on everything I have been
going through lately. I will be seeing her on Friday for my
6-month-post-transplant check-up. Although I always harbour a subtle
fear that there might still be cancer lurking somewhere in my body,
I am going into this check-up more confident than usual. I just
don't feel like I have cancer. That may sound bizarre, but I
remember the sensations that went with having active disease.
Right now, though I'm a bit worn down, I feel nothing more than
fatigue from the cumulative effects of treatment and recovery.
I am seeing my family doctor today to get on top of all the "little"
ailments that have been plaguing me. The neck and back muscle problems,
the variable blood counts, the osteoporosis. Sometimes I feel like
I am a bit much for her to handle. The bone marrow transplant unit
was set up to deal with patients going through a variety of
complications. My poor family doctor isn't used to all of these
challenges in one patient!
Well, I finally agreed to go on low dose hormone replacement.
But I'm pretty fussy about what I'm willing to take. The
estrogen is equivalent to a true human estrogen (estriol),
not a horse estrogen, and not a molecular composition "similar"
to a human estrogen. I'm also taking progesterone supplements,
true progesterone, not "progestin" which is close to but
different from progesterone. Hopefully taking these hormones
will reduce my night sweats, will strengthen my bones, and will
help me feel a tad more balanced.
My doctor prescribed a topical anti-inflammatory to help me with
the neck and back pain, but it doesn't seem to help much. I am
getting desperate for pain control. Sometimes the pain gets
so bad (and the frustration level rises so high) that I just
break down in tears. All of the pain killers I have been taking
lately cause me severe itching, which is more annoying than
you might be able to imagine. I spoke with a home care nurse today,
and she suggested taking some ativan to calm my nerves, going for a
nice relaxing massage, and then taking a bath with baby oil.
All of these were helpful. Tomorrow there is a home care doctor
coming to visit me to help me figure out what other pain control
options might be available to me. Although the mobility of my neck
is slowly improving, the pain level can still be unbearable. Hopefully
with the help of this doctor, we can get things under control for a
while. I also have an appointment at the pain clinic in North Van on
Monday, but I sure can't wait for relief until then.
I found out last night that a friend in Thunder Bay just relapsed
with Hodgkin's. I met her last summer when she was diagnosed for
the second time, and I was at the hospital visiting her once in
a while during her
bone marrow transplant. I was pretty shocked to hear the disease is
back for her. She sounded happy and optimistic, though she is refusing
any additional chemotherapy. Her plan is to modify her diet and
lifestyle to combat the cancer. I wish her the best; it must be
scary for her to face cancer for the third time.
Tomorrow is my doctor appointment at the cancer agency; their chance
to tell me I am still in remission! I feel fairly confident that my
body is rid of the cancer, though some of the physical effects I
have been experiencing lately are textbook symptoms of Hodgkin's
(night sweats, itching). I am sure I will have good news to report
tomorrow!
I had an appointment on Friday with my oncologist, and I am
happy to report that test results indicate the Hodgkin's is still
in remission. (yay!) I wish I could report overall good health,
but unfortunately my neck and back troubles, persistent anemia,
and now a strange allergic condition are all still making life
very challenging. Mark and I don't seem to get a moment's rest from
all the busyness of medical appointments and such, but we are
trying to remain hopeful that relief is just around the corner.
Thank goodness our cat is totally clueless about all this. If
she was tense too, we would never be able to afford the massage
therapy visits for all three of us!
More about that strange allergic reaction I mentioned yesterday.
It has a lot to do with the itching I complained about on Thursday.
All last week I found myself feeling itchier than usual whenever
I took a pain killer. (Drugs related to morphine have always made
me a little itchy, so I didn't think too much of it.) By
Saturday night, I was having such an intense allergic reaction
that we had to call a doctor to make a housecall at midnight!
I was so itchy that I thought I was going crazy, plus my face
was turning red and puffing up.
The doctor prescribed an
anti-histamine, and I felt better most of Sunday.
I figure that I must have developed an allergy to peanuts -- the
progesterone I started taking on Tuesday is in a base of
peanut oil. That's about the only new thing I've been putting
in my body lately. Anyway, after Saturday night, I stopped taking
the progesterone capsules. (I'll go back to using my totally natural
and non-allergenic progesterone cream!)
This morning I had a visit at the pain clinic, and the
doctor did some injections in my neck muscles along with some
acupuncture. It didn't occur to me until I was back home (and
Very Itchy) that the injections might have contained something
I would react to. Sigh. So I took more anti-histamine, and I'm
trying to avoid anything that might push me over the edge again.
I feel like my body is tired and overwhelmed by all the strange
chemicals I have been taking during my recovery. I am trying to
gently get myself off as much stuff as I can, but that is easier
said than done. I still have some severe pain to deal with, and
it is really difficult to go without pain killers. Plus I am
still taking pills that keep my headaches away, and it's dangerous
to stop taking them cold-turkey.
I got a very distressing call from my dear friend Julia today.
Her youngest son, born earlier this year, may have cancer! A 4-inch
mass was spotted in his stomach in an xray taken to diagnose the pneumonia
he has been dealing with. His parents have to wait two harrowing weeks before
their boy will undergo a CAT scan and surgery. I really feel
for Julia and her husband right now. I know how hard it has been for me
to struggle with cancer; I cannot imagine how hard it must be for a parent
navigate such an arduous course with a precious, helpless child.
I am heartbroken for them.
It's 2am and I'm sleepy as can be, so expect lots of typos.
The last several days have been almost unbearable for me as
I have dealt with intense itching from the allergic reaction.
I am not sure why I should be so itchy so long after eliminating
the offending foods and drugs. It sure is aggravating. I cannot
sleep, I am so uncomfortable!
This afternoon I had some tests done on my heart: a MUGA angiogram
done with nuclear medicine, and a common ECG. At around 5pm my
oncologist left me a distressing phone message that my performance on the
MUGA has deteriorated significantly since before my transplant.
That is a known possible effect of the toxic-level chemo drugs
I was given in the hospital; I just didn't expect to be dealing
with every possible complication in my recovery. I won't learn
anything more until I meet with a specialist next week. All I
was told is that I used to be high-normal and I have dropped
all the way down to low-normal. I think the test examines the
way blood moves through the heart. On that basis they can
determine if there is muscle damage in the heart and if valves
are leaking. Sigh. I keep saying that just as things seem a little
more hopeful in my mind, some other big roadblock comes along.
I am trying to remain optimistic in the face of adversity, but
it's tough these days. It's all I can do to rise from a reclined
position. Outdoor walks and social visits are basically out of the
question. So I try to keep my little world as comfortable and
happy as I can. Hopefully things will improve soon.
It's a blustery cloudy day out there; it reminds me that a season
change is on its way. Mark and I got out of the house for a
non-medical event today! We went and saw the movie "Ever After"
which is a Cinderalla story starring Drew Barrymore. I liked it
because it was just the sort of escape I needed. Right now I
am paying for the three hours out of the house by nursing my
sore neck with a hot-water bottle.
I am surprisingly not worried about what I will find out about
my MUGA scan results in the next few days. Whatever is just is;
it's out of my hands. I have spent the past couple of months trying
sooooooo hard to affect the progress of my recovery, and I have
little to show for it. I am realizing that some things happen
in spite of our best intentions.
I have been ridiculously tired all the time, which I hope will
improve as soon as my hemoglobin picks up. Meanwhile it seems to be
a good excuse for lying about doing nothing!
It's 2:30am, I've taken all kinds of stuff that should make
me really sleepy, yet here I am tossing and turning. I think
the itchiness is keeping me awake. I saw the allergist again
today and he wants me to continue with the 3 anti-histamines
I'm taking now. I wish they would work better though!
Tomorrow is a "day off" for me! No physio appointments, no
doctor appointments (unless that follow up for the angiogram
gets scheduled), no nothing. I'm going to go for a one hour massage
if I can manage! Well, I'm off to try to get some shut-eye
or I will be sleeping all day tomorrow!
Last night I made a concerted effort to get a better sleep, and
it paid off. I probably got a full 7 or 8 hours. I was itchy all
night and I can remember Mark grabbing my hands on several occasions
as he said "Stop scratching!" It's awfully hard to resist.
I put another call in to the allergist today to see if there isn't
some other option to help me cope. I wasn't there when he called
back, but Mark told me the gist of what was said. Basically, the
doctor grilled Mark (at length) about my emotional stability. He seemed to
infer that the itchiness is all in my head, and he wants me to
continue taking the drugs I've been given. How patronizing!
I just hope the itchiness lightens up soon so I won't have to deal
with this guy any more.
I had an appointment this afternoon with the cardiac specialist.
We learned that my MUGA scan score deteriorated from the 70s pre-transplant
to a level of 49 now. It could be a lot worse ... But the fact
is there has been damage done to the heart muscle, and one of the
valves isn't working properly. I will be taking two different
medications for my heart, the first one starting tonight.
(Sigh. And I was trying to reduce my drug intake.) It is possible
that this condition may be reversible over time. I sure hope so.
At this moment, so many things are going wrong in my body, I feel
like a discarded toy: once useful but no longer much fun.
I really crave a vacation from my body. Someplace tropical where my
neck works properly and I don't have any pain or worries!!
Mmmmmmm, Hawaii comes to mind. Mark and I had such an idyllic
vacation there in January. All the woes that had been plaguing
me here at home seemed to magically disintegrate as soon as we
got off the plane. I felt strong, happy, healthy ... I still
hold lots of images from that trip in my mind. They are great for
little last-minute getaways in the midst of high stress situations.
It still seems that Mark and I spend most of our days
running from one medical appointment to another. Happily,
all the physio appointments are starting to pay off. The
pain has reduced a bit, and the range of motion has improved.
I still can't lift my own head off my pillow, but one step at
a time ...
The strange allergic reaction I mentioned last time turned
out to be a mild allergy to peanuts. Peanut oil is the base
in a drug I WAS taking (no more). Unfortunately I am still
REALLY itchy and now I am very prone to reactions to other
drugs. The allergist I see has decided I'm crazy. He doesn't
believe I'm really as itchy as I claim to be! (I say it's time
for a new allergist!)
We now have a better understanding of why my pulse rate has been
so high lately (120 beats a minute). The chemo drugs I had before
the transplant did some damage to my heart (one muscle has been
weakened and one valve leaks). I have been put on a particular
heart medication for the next 2 weeks. Then I will meet again with the
cardiologist, and a second drug will likely be added. Sometimes this
sort of condition can be reversed, so that's what we're believing in
this case. We knew going into the transplant that there was a
high risk of organ damage. I guess I just didn't think any of
it would really happen to ME!
Ah well, it's a quiet Saturday night, I can hear my cat crunching
her food, I'm sitting back with some warm tea (it's starting to
feel like autumn), and soon I'll be sleeping and dreaming
happy thoughts. I hope all is well wherever you are in the world.
We all get so wrapped up in our own affairs, it's easy to lose
track of time, to lose sense of priority. Baby Liam, son of my good
friends Julia and Lauch in Ottawa,
had his surgery today, and the mass removed looks like cancer.
It will take up to 10 days for specific pathological information
to be available, but he has made it through the first hurdle.
Julia is staying at the hospital to be constantly by his side.
I wish I could do more than pray for Liam, Julia, Lauch, and Jack.
I hate that cancer so viciously touches so many lives.
I talked to Lauch last night, and both Liam and Julia are back
home, safe and sound. Apparently Liam is so joyful and resilient
that they are having trouble believing anything could be wrong with
his health.
There are still benign options that could come forth, so everyone
continues to hope for the best. It won't be
known one way or another for another week however.
In my own little world, I've been focusing on pain management
(for my neck), itch control (I finally got a lotion that helps
a lot, but I have to slather it all over my body about every hour),
and mood enhancement. I have definitely been depressed about how
long it is taking to deal with all these complications. So last
night I finally broke down and took a pain killer. And y'know what?
It really felt like a little holiday from my body (except for that
pesky itch)! I took advantage of my good humor by making a few
phone calls I've been meaning to get to. It felt good to talk
with friends, to laugh, to be lighthearted (even if only temporarily).
My family doctor feels strongly that I have to take my pain
meds more often, even if it does make me so itchy that allergists
think I'm crazy! (She sent me to another allergist for a second
opinion. This second specialist couldn't replicate the peanut allergy
found by the first specialist, and he feels very
confident that I don't have any food allergies of any sort.
He thinks my itchiness could be due to a/ strange interactions
between all the drugs in my body and after-effects of all the
treatment I have been through, b/ surges in my pituitary gland's
production of follicle stimulating hormone ever since I went
chemically menopausal, or c/ Hodgkin's. Itchiness can be a symptom
of Hodgkin's, but it never was for me, and I sure don't have
any other signs of the nasty disease's return. I don't have much
choice but to wait and scratch (or try not to scratch as Mark
would prefer me to do).
Going to physio every day has been very grating on my nerves.
I've been seeing several different ones (because each one has
a unique approach, and I want to experiment to see what fits
best for me) but my progress hasn't been very steady. Right
now I feel I have reached a plateau. On Thursday, I told one
of my physiotherapists (Bill Treloar) that what I really need is a
total rehabilitation program. It's as if I have been hit by a
truck (we're talking an 18-wheeler, not just some little pickup truck!) and
need to go somewhere for many hours each day
where I'll get physio, exercise, supervision, feedback. Bill said
he would be willing to tailor-make such a program for me,
since they (at Treloar Physiotherapy)
have the facilities for Workers' Compensation
Board patients and ICBC patients. He said it would cost over
$100 a day, but today my family doctor said she would write a letter to
my extended health insurance company to ask them to cover it.
I sure hope that works out. Meanwhile, I'm keeping up with the
pain clinic, various physiotherapists, massage therapy, gentle
stretching and exercising, and LOTS of time spent resting horizontally.
Time for dinner. A good thing about taking painkillers is that it
brings back a bit of my appetite. I have been eating really poorly
lately. It's nice to feel hungry right now!
I had a good long talk with Julia in Ottawa yesterday. Liam is
doing a terrific job bouncing back from the operation. Apparently he
bends and turns in every direction without even flinching from pain.
He sounds like a tough, resilient little guy.
Early pathology reports on the extracted mass are promising. So far
only benign tissue has been found, but the final word can't be
made for about another week, when tissue in the calcified portion
of the mass can finally be tested. There is still good hope that
Liam doesn't have cancer. And even if the mass is malignant,
it has been caught about a year earlier than is normally the case.
Since the surgery was so successful, it's not even clear if Liam would
have to endure chemotherapy. A "wait and see" approach might be
adopted to see if he fares well now that the full mass has been removed.
Julia sounded so upbeat and positive when I spoke to her. I know the
last week has been hellish, but she's doing a wonderful job at
maintaining strength and optimism. I'm really proud of her.
My own mood has been very self-centred and dark. I am trying not to be
too much of a burden on people around me, but the physical constraints
I'm facing are so overwhelming lately. Last night I was flopped
out on the bed, unable (or unwilling) to move, just focussed on the
fact that my heart was racing at 120 beats per minute. The ACE inhibitors
I have been taking for about 10 days are having no impact on my heart,
which is discouraging. I guess the next step will be to try Beta Blockers.
My family doctor says that although the heart muscle is not as
good at regenerating as, say, liver tissue, there is good reason to
believe the Beta Blockers will help a lot. My body is stuck in a
"fight or flight" mode, not surprising given all the chronic pain,
foreign drugs, emotional stress, etc. The trick will be to convince
my sympathetic nervous system to take a rest.
As I was lying on the bed last night, focussing on the beating of my
heart, I saw an image of my dad on his deathbed. He died in January
1992, alone and penniless in a grungy hotel room on skid row.
He was loved, and I felt emotionally very close to him, but I will
always regret that he died with no one to calm his nerves or to
hold his hand. He had known for many years that his heart was in bad
shape, but he found it difficult to make the necessary lifestyle changes.
I don't think he would have any regrets if we could ask him today how
he felt; I think he might even do a lot of the same things he did and
things might turn out exactly as they did. It's hard to say. I just
like remembering the happy times we had, and I like reminding myself that
he knew he was loved.
There is no mistaking that I am very loved lately. Many people have been
doing kind things to make this rough time easier. An internet friend
who has also struggled with Hodgkin's, Lisa in Southern California, sent
me an amazing care package filled with a seemingly endless supply of
treats!! A Wonderwoman Pez dispenser, lots of books and magazines,
candy, a gorgeous lavender-scented pillow, a stone to give me strength,
a picture of her so I know what she looks like, a kaleidescope, and on
and on. What a generous gift from someone I hardly know. She wanted to
make sure there was some sunshine in my cloudy days.
Another friend, Ifat, came over today to guide me though some gentle
yoga and relaxation. She is generous to spend her day off doing with
me what she does for work. She brought gorgeous flowers and helped my
body feel calm and useful. If you ever find yourself looking for
someone to lead you through a journey in yoga, meditation, health,
and well-being, consider visiting Ifat's beautiful
yoga centre.
Ifat has offered to come visit me again next Sunday.
I am already looking forward to it!
My friend Kate in England, inspired by the discussion of crows that
took place while she was vacationing in Greece, sent me a copy of
Ted Hughes' book of poetry called "Crows". How appropriate!
Still in the evening, I am mesmerized by the journey of the crows.
Last night I was lying on my bed between 6 and 8 in the evening,
and I watched the crows head east to their roost in dribbles and
drabs. It's interesting to see their journey start earlier as
the days get shorter.
Our friend Gilly came over for a couple of hours a week or two ago,
to counsel Mark and me through what has become a physically and
emotionally difficult time. She helped us assert that we are still
top priority with each other, but she also helped us come up with
some concrete ways to cope better with some of the unpleasant stuff
that's going on. Gilly also told me about her physiotherapist,
who helped her get through some serious neck troubles some time
ago, and she even sacrificed her own appointment time so I could
see the woman sooner than I might otherwise!
I longingly look forward to the day when Mark and
I can toss up our heels and run through the sand, drive to the
desert, or spontaneously take in a weekend matinee. I marvel at the
thought that one day I will crave food again, and I look forward to
not losing any more weight! Gosh, maybe the solution is just to eat
as much chocolate as I can get my hands on.
Some things can seem so amazing that you need real convincing to
believe them. For months on end my pulse has been racing along
at 120. I have been taking ACE Inhibitors for 2 weeks now, but to
no effect. I saw my cardiologist yesterday, and she added Beta Blockers
to my collection of medications. Lying in bed just now, I took my
pulse, and for the first time in sooooo long, it was 80. I didn't believe
it so I checked again. And again, and again! Hopefully this will give
my heart the rest it needs to start rebuilding the damaged muscle.
I hope I don't have to stay on this medication for too long.
My cardiologist was a bit of a hoot yesterday. Her name is Vickie
Bernstein, and she's very elegant, competent, respected. She has a
reputation for being somewhat blunt and for "shooting from the hip"
(as she puts it). When I walked into her office yesterday, she said,
"My God, girl, you are pale!" And I replied, "Well, yeah, I'm pretty
anemic!" She said, "The least you could have done was to put on a little
lipstick to brighten up your face a little before you came in."
I laughed! "Dr. Bernstein," I said, "I had actually considered doing
that (it's true, I had) but then I figured you would want to see me
as I am, to make a full assessment." "Well, you're right," she said,
"but next time consider a little colour in your lips and around your
eyes. You'll be amazed how terrific it will make you feel. And your
husband will feel better too!" She went on to tell me how the first
thing she does in the morning is to put her face on. I had to feel
flattered by her candor and honesty. Her approach to this matter made
it very clear to me that she's totally comfortable around me; I think
she even likes me! Anyway, she is remaining hopeful that the significant
loss in my heart's efficiency can be reversed, so I hope she is right.
Earlier today I spoke to Julia in Ottawa. They are all remaining
cautiously optimistic and hopeful. Apparently Liam has bounced back
as if nothing ever happened and the scar on his belly looks like it
has been there for years. The doctors had hoped to know by now whether
or not there is any sign of malignancy in the extracted tumor, but the
calcification is making things difficult. The wait may extend as long
as 2 more weeks. But at least all the early signs are positive.
Tonight Mark and I were taking it easy, watching a video of
Saturday Night Live from last night. I had had a rough day with
a lot of nausea and a great deal of difficulty eating. Mark
zipped out for a few minutes to get himself a coffee at Starbucks,
and while he was gone I actually vomitted, something I haven't
done in ages. I felt a little better after it was done, but it sure
would be nice to crave food and to keep it down again. I guess after
the anemia lightens up, I can expect that to happen. Mark came home
after most of the gruesome stuff was over, and to his disappointment
he had found Starbucks was closed. So what he brought back instead was
a single red rose. It smells so beautiful. It's rich and over-ripe, so
the petals fall off easily. I love it. What a nice way to recover
from a gastro-intestinal disaster!
I got flowers earlier today as well, from my friend Shannon who attended
our friend Tracy's wedding. Shannon caught the bride's bouquet (actually
it sort of fell at her feet, and nobody else would go anywhere near it)
so she picked it up, and brought it to me. It's gorgeous, dominated
by freesias which I love.
I spent most of today at home alone, being very lazy. Some time in the
afternoon, I mustered up the initiative to go downstairs to get the
mail, and I ventured outside in the sunshine to read it. It felt
nice to walk alone, slowly, by the waterside, to inhale the fresh air,
and to find a humble bench
where I could rest and soak up the surroundings. This was my first
venture out unaccompanied in ages. My neck pain wasn't too bad for
most of the time; when it got a little sore I headed back inside
to recline.
If I feel up to it in the morning, I will head to the cancer clinic
to attend my relaxation group. It isn't very often that I have been
able to spend time with those friends recently. It would be nice to
show up for a change.
Lately, my schedule has been too filled up with doctor visits and
medical appointments to be able to attend very frequently. Tomorrow
my physio appointment starts just as the relaxation session ends, and
since the physio clinic is just down the block from the cancer clinic,
it should work nicely.
My heart rate is still slow and steady, but my itchiness still drives
me crazy. Hopefully that thorn will disappear soon.
Copyright 1998, All Rights Reserved.
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Wednesday September 30, 1998:
