We didn't decide until the last minute, but I was feeling strong and well, so we packed our bags and headed to Kelowna (a beautiful destination in the interior of BC) this past weekend. Months ago, our friend Dr. Bill Nelems told us he would like Mark and me to attend the April 3 grand opening of the new Cancer Centre for the Southern Interior. Bill has spent a long time getting that facility ready to start taking patients, and his efforts have clearly paid off. The atmosphere at the clinic is friendly and welcoming, the staff is warm and accommodating. That community is fortunate to be home to a cancer centre run by Bill, for it is clear he will bring a lot of love and expertise to his role.
Bill booked us into The Rocking Chair Bed and Breakfast along with our friends Lis and Anthony. The bed and breakfast is run by a lovely couple, Jeff and Royce, who made our stay very pleasant. Shortly after our arrival, Mark and I were noticing family photos in the living room. Mark pointed to one picture and asked Jeff, "Are those your kids? Your son looks exactly like a friend of ours!" Jeff started telling us about his kids and Royce's kids, and when he mentioned that his son is currently in Paris, I said "Your son ... isn't ... Grant ... Is he?" It turns out that I have known Jeff's son Grant for about 10 years! We went to school together in the south of France, and we've been in regular contact ever since. What a small world!
Yesterday I had a follow-up visit at the bone marrow transplant daycare unit, and all is well. My progress continues to be good; in fact my blood counts are normal now! My next scheduled visit to that unit isn't until June 1st, when I will go in for what is known as day 100 follow-up. That is the visit, 100 days following transplant, when various tests are conducted to monitor progress. It's a real landmark to know I am already well enough that I get two months "off" before my day 100 visit.
In the meantime, I will be starting radiation treatment. "Planning" starts in two weeks. That's when I will be lined up on a machine called a "simulator" so the technicians and doctors can determine the parts of my body to be radiated. I will be having a CT scan done at that time as well so the doctors have a good idea of what is going on inside my chest. The following week, around the end of April, I will start the 4 weeks of daily radiation treatments. Between now and then, if I can find a bit of energy, Mark and I hope to do some fun stuff!
Mark and I managed to get away from home for a few days, but I quickly started feeling unwell, and we ended up coming back a little early. Basically, I developed a shortness of breath, consistent with some potentially serious lung difficulties that can arise post-transplant. I called the transplant experts back home, and they strongly encouraged me to see a doctor immediately for diagnosis. The xray taken of my lungs confirmed that something was amiss. Mark and I ended up returning home ahead of schedule so I could start treatment immediately. I spent all afternoon today at the outpatient facility, getting treatment and undergoing tests. Tomorrow I'll be having a CT scan and possibly a bronchoscopy, so I should know more soon. Stay tuned for more info!
The exact nature of the problem has not yet been pinpointed. I may
be dealing with a bacterial lung infection. (Immuno-suppressed folks
like me are vulnerable to a particular set of lung infections
that don't generally pose a risk to other folks.) It may also be
a chemotherapy-induced lung inflammation called pneumonitis.
Right now I am taking a whole host of medicines to treat all the
possibilities, and I feel very much the way I used to feel after a
dose of chemo.
I am happy to report that one of the drugs I am taking is already
helping, so I am already breathing more easily! This condition,
whatever it is, should be retreating soon. (It should have known
better than to mess with me in the first place!) Before long I
will be ready to embark on that final (fingers crossed, we can
only hope) phase of my treatment, radiation.
For me this will be an indoor-weekend, but that gives me a chance to
work on my somewhat neglected web page. You know I can't be feeling
THAT bad if my fingertips are busily engaged in keystrokes.
I have been watching a TV biography about Rachel Carson, author of
Silent Spring. Earlier this century, this woman pioneered a fight
against the use of insecticides such as DDT, deadly not only to
pests but also to human health and the ecosystem in which we
thrive. In spite of her own health problems, she diligently
catalogued scientific facts and damning evidence against
chemical companies. I suppose more contemporaneous authors
like Sandra Steingraber (a biologist who recently wrote a
chilling book called
Living Downstream) are following in her
footsteps. It seems crucial to me that we as a community develop
a better appreciation for the damage we inflict on our environment,
and the impact on our own well-being. These women have demonstrated
bravery and diligence beyond my comprehension.
Right now I am awaiting results of the bronchoscopy I had performed
earlier today. Until a definitive diagnosis is obtained, I am on
multiple broad spectrum antibiotics and steroids. Hopefully we will
soon learn precisely what has led to my lung problems so I can
pare down the volume of medications I consume. As much as the
medicines seem to help alleviate my shortness of breath, they do
so at the expense of other aspects of my well-being. I am continually
nauseated and I often have pain in my stomach. My sleep is quite
disrupted as well. Either I sleep 20 hours a day or I awaken in the
dark of night with insomnia. I will be very happy when a diagnosis
arrives. So far we know my lungs have not been taken over my
Hodgkin's and we know I don't have Legionnaire's Disease. We're
getting closer. I may have PCP pneumonia or pneumonitis caused by
the high-dose chemo I received in preparation for the transplant.
Good news, the volume of medicine I consume daily has been somewhat
reduced. The bronchoscopy did not reveal any nasty bugs lurking
in my lungs (yay!), so the suspected diagnosis is an inflammation caused
by the chemo drugs I was given in preparation for the transplant. Not
exactly wonderful news, but we can work with this. To facilitate
this condition going away as soon as possible, I am still taking a
few potent drugs, but they are more bearable than what I was taking
before. (And now I am no longer sleeping 20-plus hours a day!) Because of
this condition, my radiation treatment will have to be postponed
for a couple of months. More time to get stronger.
Already today Mark and I have been outside enjoying a stroll in the
sunshine. It's *great* to be able to walk more than 20 steps without
stopping to catch my breath. Ahhhhhh.
Thanks for all the moral support, gang. I sign off today with a smile on my
face.
Well, I sign back on with a yearning for sleep in my eyes. It's
just after midnight, and for the first time in ages I can't sleep.
The last time this struck was during December and January when I
was taking prednisone as part of my oral chemo regime. Well, prednisone
is the drug of choice for combatting the chemical pneumonitis I'm
facing. So sleepless nights are back. It's a strange feeling -- I'm
tired but not sleepy. In fact, I'm downright wired and giddy, which is
a big change from who I have been over the past couple of weeks.
This mood makes for more smiles and laughter around our home, but
I must say some sleep would be nice too.
I heard earlier today from my oncologist at the Cancer Agency,
Tamara Shenkier. She just called because she had heard about my
bronchoscopy and she wanted to make sure everything was all right.
She is one of the dear doctors who came for a social visit during
the time of my transplant. She sat with me one morning and told me stories
about her kids. I laughed when she told me that her 4 year old daughter likes
pretending she is Dorothy from "The Wizard of Oz". (Tamara had noticed
I had the movie poster up on my wall. It's an all-time fave of mine.)
In fact, it goes a step further because Tamara's daughter insists that
everyone in the family has to play a role from the movie.
Mom is Scarecrow, Dad is the Lion, the nanny is the Tin Man, and
baby sister is Toto!!! The sherade can go on for days, and if someone
slips out character, there is trouble! One morning, Tamara greeted
her little girl by her "real" name, and Tamara was scolded back, "SCARECROW!
I'm DOROTHY! Have you forgotten?!" Moments like those made my time at
the hospital much more pleasant. I feel lucky to have fond memories like those
to look back on. Even in the darkness there were rays of light to keep
me going.
Ever since my lung problems have been clearing up, my chest pains
have been dissipating. The pain in my chest has always been the litmus
test for the cancer's progress, so I am hopeful this state lasts and
lasts. Tonight I actually started feeling well enough that I could
imagine a whole, long life, growing old and stuffy with Mark. I realize
we can't know when our time is up, but it makes me happy to feel
hopeful again.
I spoke to Gayle's Mom and Dad, Edith and Don, on the phone tonight.
They live in Winnipeg, but they've been on my mind a lot. Edith sent me
a card around the time I was in the hospital, and in it she drew a
hug, like a hug she used to send to Gayle in letters. I was so touched.
Edith says that Gayle once said that ever since her leukemia diagnosis,
she felt there was a time-bomb ticking
above her head, and she never knew when it was going to go off. I
thought maybe we all have a time-bomb, in a sense, but we both agreed
it's all the easier to ignore the ticking when you don't have a
life-threatening illness staring you in the face.
Once again, I am writing in the wee hours of the morning. The time is
almost 2 am, and I find myself dealing with insomnia. It's not an
unpleasant feeling, but I must say I would rather be asleep right now.
In an effort to deal with the effects of this monster-drug prednisone,
I ordered a book on-line today, called "Coping with Prednisone". It
should arrive in a week or so, and I hope it lends new levels of
rest to my existence!
Yesterday (I want to call it "today", but it is today no more) was
a very good day. I felt better than I have felt in a long time...
I was cheerful... I could breathe a little more easily (though exercise,
that is walking almost any distance, still knocks me out)...
I was lacking many of the old feelings and bodily sensations
that have recently struck fear in my heart... I had energy to do fun things...
It was raining but I marvelled over the beauty in the
cherry blossom trees... I went shopping for clothes that made
me feel pretty (and they were even bargain finds in second-hand stores!)...
And perhaps most exciting of all - my hair is showing a definite
fuzzy comeback with attitude! (I'm still definitely in the hat-zone,
however.) What more could a woman ask for? Well,
sleep, I suppose.
For the first time in ages, I have a modicum of faith that
I might still have a long, healthy life ahead of me. This brings
immense joy to my heart, and it puts a noticeable bounce in my
step. I am sure Mark has noticed the upswing in my mood.
I have reservations
about the effects of my upcoming radiation treatment (though that will
be postponed for a couple of months while my lung problem is being
treated). I am aware of the high risk of secondary cancers that comes
with radiation to the chest (like breast cancer and non-Hodgkin's lymphoma).
I also know further lung complications and heart problems could easily emerge.
And right now when I am suddenly feeling stronger, I wonder about the
logic of putting new risks on my plate. I have pondered such questions
before, and I will not attempt to reach an answer to my current dilemma
just now. I have a reprieve before me right now so there is no immediate
need to make any drastic changes in my planned treatment protocol.
For now I will maintain the current course with an open mind.
Today I wore light-weight (spring!) clothes in pastel colours and
I was told I looked like someone from a Monet painting. What a
sweet compliment to make a woman feel like she is walking on air!
It must have been the big peach scarf wrapped around my straw hat.
I did look pretty traditional and French painting-ish, I suppose.
I probably could have pulled off an appearance at an afternoon garden
party or something. Strolling aimlessly in the
sun was much more to my taste, however. It feels great to be
able to walk again without losing my breath. This is the best
I have felt in two years. I do still have tightness in my chest,
but for now I'll take that as a gentle reminder to be grateful for
each breath. No need to obsess on the "what ifs".
I have been doing a lot more reading now that my eyes are feeling
stronger and my mind is feeling more supple. The mental stimulation
is terrific. I am pondering thoughts and ideas that tickle my
sensibilities. When I walk into a bookstore, I have an overwhelming urge to
spend hundreds of dollars! I already have an accumulated stockpile
of books to last me quite a while, so there is no
need for me to break the bank just yet.
I am pleased to find myself doing more enjoyable stuff around the house
too. Lighting candles at night, savouring the pleasure of aromatherapy,
cooking old favorite treats and meals, playing with the cat, and even
doing mundane chores like laundry and dusting. I feel a little more
human every day. A bit more of Lisa is emerging -- not entirely the same
Lisa I used to be, but a Lisa I love. I feel a sense of freedom,
I feel curious and stimulated, I feel alive. There are so many moments
of sensory pleasure in each day. What a treat it is to just observe
what happens around me; taking part as an active participant in the
world is like icing on the cake!
It is just after midnight, but I am still excited because
earlier tonight I went rollerblading for the first time in ages!
And this only two months post-transplant!
For the past few days, I have had a chance to use muscles that
were on the verge of disappearing from my body. It feels great to
move about in the warm
spring weather, to enjoy walks, to feel the air coming in and out of my
lungs ... I feel quite motivated to regain my strength (slowly).
With the terrific sunshine, there have been lots of opportunities
to resume activities outdoors. I know that my increased motivation
is largely a side effect of the steroid I am taking (the same one that keeps
me awake at all hours). But I'll take it all the same!
It is bizarre not really knowing if my body is "well", but I am
taking advantage of this energy burst to work towards improving my
physical condition. I am really out of shape, so any
increase in activity is a step in the right direction. As time
goes on, I will have a better idea of how well the transplant worked.
I vascilate (many times a day) between fits of panic that the cancer
isn't gone and the affirmation that the high-dose chemo must have
done its job. I will never really know for sure, I suppose. But hopefully
over time I can develop a greater sense of calm. I feel that sense of
calm developing. I am certainly more at peace now than I have been
at any time in the past two years. I truly understand that we will all
die, and so I make the most of what I have right now.
I have been like a vampire lately, updating my web site in the dark
of night. Well, today my update comes in the company of sunlight!
It's a gorgeous Vancouver day, reminiscent of hot summers past.
Early yesterday morning, when Mark and I suspected good weather was
in store, we took a spontaneous drive up to Whistler. We managed
to get ourselves into a gorgeous room at the Chateau Whistler at a
sweetheart of a bargain, and we relaxed! Our cozy room had a fireplace
and a soaker jacuzzi. We did a lot of walking around the village
and along brookside trails yesterday, but my prednisone-induced
energy fizzled out a little by late afternoon, so we spent the rest of
the evening in our room being lazy. Some old familiar chest sensations
returned last night (and have been lingering ever since), sending my
mind reeling. I think the most likely
explanation is that my lung problems are not quite cleared up.
My prednisone dose has been slowly tapering downward, and with
that, for some patients,
it can become clear that the pneumonitis is not quite
gone. I must admit that "cancer" is the first thought
that pops into my mind when I feel chest pain, but I must try not
to let such thoughts control me. Discomfort makes it hard to
"live in the moment" and savour the "good things in life", but
I must do my best for there is so much to enjoy.
Just a little snippet today. I thought I'd mention a couple
of things that have been bringing me real pleasure lately.
Reading. I have been devouring books like there is no tomorrow.
Books about Buddhism, books about genetics, Canadian fiction,
and all sorts of other stuff. I am having so much fun reading!
I look forward to each new book with eager anticipation.
Walking. When I first got out of the hospital,
walking was something I could only do with great difficulty.
For the first week, I often found myself crawling around the
apartment when my muscles couldn't bear to hold me upright.
In time, I was able to take
the occasional walk around the block. This made my muscles
groan and complain, but they gradually became more limber.
Then I became brave enough
to go for longer walks (though I usually regretted having aimed
to walk too far). For the past week, Mark and I have been taking some
really long walks. It started last Wednesday night, when I was feeling
awful from the prednisone, and I felt like I needed some exercise to
get some "good" chemicals circulating through my body. We walked
from our apartment to English Bay, watched the sunset, then continued
walking through the downtown streets, eventually winding our way
home after a solid two hours at a brisk pace. I slept like a baby
that night!
The short rollerblade jaunt was a boost to my spirits, and the next
day I sure could feel some interesting muscles in my low back!
My next physical endeavour might be to hop on my bike. That should
be easy with the good weather we've been experiencing.
All of this increased
activity is a good counter-balance to the appetite changes that have come with
prednisone. Prednisone often leads to round the clock hunger,
and it also causes strange weight-redistributions on the body.
The face becomes bloated (known as Cushingoid syndrome), a
small hump can develop between the shoulders, weight goes on around
the torso ... I have been eating a LOT, which isn't a bad thing
in and of itself. (I'm definitely a fly-weight right now, and it
would likely be a good idea to put on some reserves before radiation.)
It's just that the stuff I most crave is junk. (Ask Mark, he will
tell you what horrid stuff I desire!) I can accept that a few
temporary physical changes are a small price to pay for the long term
benefit of my lungs. But after all I have gone through in the past
two years, this just feels like yet another assault. I take it in
stride though. My first reaction to being on prednisone was
almost mournful; I dreaded the physical changes. Then I realized
that I can deal with the changes if I just relax a bit. So I am
doing my best. (Though I am giving in to the occasional evil craving!)
I just found out my grandfather, Agner Johansen, died about an hour ago.
He was 84, and he lived in Denmark with my grandmother Helena, my
uncle Gus, and my aunt Gerd.
I last saw Agner almost 5 years ago, when Mark and I visited Europe.
I sure am glad Mark had a chance to meet him.
Agner was a jolly, healthy man who loved gardening, story-telling,
bird-watching, and books. (In fact, my grandparents' house
is filled with books under tables, stacked double thick on shelves,
under beds, ...)
Agner was active and healthy almost until his final moments. I
am told that just a few days ago,
he was out riding his bicycle in the rain. It makes me happy to think
that he was so strong to the end.
Last week, my aunt Helle who lives in San Diego was
visiting the Johansens along with her granddaughter Shoshanna
(who is Agner and Helena's great-grandchild).
I'm sure this little girl brought much joy into her great-grandfather's
final days.
My grandfather was a teen-ager when his parents decided to immigrate
to Canada from Denmark. They lived in a town called Skidegate in the
Queen Charlotte Islands, far to the north of Vancouver Island off the
coast of BC.
I don't know a lot about his years there, but I do know that
at some point they all moved back to Denmark. My grandfather served
in the navy as a young man back in Denmark. Later, after marrying Helena
and having
four kids, he brought his young family to Vancouver. My mother met my dad
here when she was 15, so when Agner and Helena decided to move back
to Denmark a few years later, my mother stayed here. (Lucky for me!)
I will light a candle in my grandfather's memory tonight. I hope his soul
rests safe and sound.
I spent some time with my Mom tonight. She is leaving for
Denmark on Thursday, so she can attend her Dad's funeral.
She will spend 9 days with her mom, brother, and sister
(and a huge extended family) which I think she will find
quite healing. I remember the pain of losing a father. My
Dad died suddenly in 1992, at the age of 53. My grandfather
was 84, but the pain of losing a parent is never easy
to deal with.
While I was visiting my Mom, my aunt called from Denmark,
so I got a bit more information about what happened to Agner.
I am told that he died relatively painlessly due to a sudden
case of pneumonia. I guess getting pneumonia when you're 84
is about as dangerous as getting pneumonia (or pneumonitis)
just after a bone
marrow transplant. I understand why the doctors are so cautious
about such a condition.
It's really sad that Agner is gone. It's not clear who will tend
to his huge garden, who will read his books, who will take care of all
the handy chores he managed around the house, who will listen
to the bird calls. Maybe he is just around a corner, still
witnessing ...
I just got a nice smile from a stranger on the street. It makes
me feel good when folks out there are friendly.
This morning Mark and I took a drive out to West Vancouver
to walk through Lighthouse Park, which is
filled with old growth trees. We saw huge stands of hemlocks,
cedars, and firs. Seeing those ancient stands can be pretty humbling.
Some of the park trails lead down to the shore. We found ourselves
by the water's edge at low tide, just as the sun was breaking
through a thin layer of clouds. We poked around in tidal pools,
observing starfish, crabs, and shrimp in their micro-world.
We walked over big
boulders in the sea, marvelling at the view. The site was totally
isolated; it was great to have some time there all to ourselves.
Before we left, I saw a seal in the ocean, not 20 feet away
from us! He ducked underwater as soon as he heard my voice.
I wonder if he would have stuck around longer if I hadn't been
wearing a hat. (Would he have realized I am bald, just like him? Maybe
he noticed my hair is just starting to grow back and that's what
scared him off!)
Strolling back up to the parking lot was a bit arduous. I walk better
downhill than uphill! We took it slowly, noticing all kinds of
beautiful spring flowers along the trail. After all that, we were
back home in time for lunch. What a great start to the day!
I feel that my body craves motion and activity. If I spend most of the
day at home being lazy (like I did today!), then by late afternoon I
really need
a long walk. My lungs are not fully on-board yet, but my muscles are just
aching to be used. I wonder if some of the lingering lung symptoms
are partly related to my increased activity levels. The pneumonitis
can't just disappear overnight, even with the help of the prednisone.
The fact that I still feel pain in my chest could be explained
by some of that lingering lung inflammation aggravating scar tissue
from the Hodgkin's and from the pneumontis. (This would be especially
likely to happen when I am active and make my lungs work hard). Of course
there are other potential explanations which don't appeal to me quite
as much, but I have no choice but to wait and see.
Yesterday Mark and I set out for a walk in the morning, and we ended
up meandering through Chinatown, having vegetarian dim sum
for lunch, then taking in the splendour of the
Dr. Sun Yet Sen Classical Chinese Gardens. The gardens were
put together in 1985 and 1986, but this was my first visit. The
place is beautiful with trees, rocks, water, and architecture placed
according to exact Chinese standards. Every corner has a purpose;
every season has a distinct look. While we were there, a variety
of flowers were in bloom (including a tree with pretty pink blossoms
which I think may be called chamelia), and we had a spontaneous visit
from a couple of Canada Geese and their newly-born gosling.
I just got email from a friend with a couple of suggestions for this
web site. (Thank you! You can always feel free to tell me what is on
your mind.) One comment was that the background I had on this page made it
difficult to read the text. Well, reading the text is pretty important,
and I want all of you to be able to do it! So here is a little
snippet of the background which will be no more:
Let me tell you why I like it.
It reminds me of how
desperately I longed to see the cherry trees blossoming when I was in the
hospital (patience ...), and it reminds me how happy I felt that the
cherry trees were still in full bloom when I did get released
(pleasure ...)! Cherry blossoms have always been among my favorites!
The second suggestion was that with all the reading I have been doing,
couldn't I please share some titles and comments
so that others with more pressing schedules and
less spare time might live vicariously through my book perusing?!
Well, of course, I would be most happy to oblige! There is a
recently-added page here on this web site where I keep a very short
catalogue of some of the books
I have found interesting, but it is not a comprehensive list by any
means. There is no mention of fiction, for instance, and many of the
books are directly related to cancer.
From now on I will try to mention when
I have read a particularly good book. In turn, I would really love to hear
from others about noteworthy books. I have got to maintain knowledge of
fresh book titles, after all!
Why don't I start mentioning some books now? During the last week
I have finished reading some amazing books, after all. I think what
I will do is add them to the catalogue
I mentioned above. You can just click on the book title, and you'll
be whisked away to my mini-review. Just use your "back" button to
come back.
The two books I have read most recently are
The Cure for Death by Lightening
by Gail Anderson-Dargatz and
Kitchen Table Wisdom by Rachel Naomi Remen, MD.
More to come soon!
Mark and I just got back from an after-dinner walk along the seawall
near our place, and what a lovely evening it is. When we started walking
west, toward the sunset,
we were both a bit cold, but we pressed on. We warmed up in no time.
During our stroll,
we passed by several groups of Canada Geese with their golden goslings.
I could pass hours just watching the babies pluck the grass out
and listening to their faint chirps.
At one point I saw a mother duck and her three tiny ducklings in the water.
The ducklings were poking barnacles on the dock above the waterline,
and the mother was just casually watching them wear themselves out
for the evening.
On the return part of our walk, the sun was setting, so we were looking
towards clouds over the eastern horizon that were under-lit by the
colours of the evening. The sunset cast a pink, almost reddish-orange
hue on some of the clouds. Other clouds appeared purple or blue.
We could see patches of brilliant sky between some of the clouds.
There was rain falling in the distance, so it was no surprise when
a rainbow sprung up, high above.
Now, sitting in our apartment, I can see the remnants of a gorgeous sunset
out to the west. What a great place to call home.
I am happy to report that my nights are once again filled with sleep
(when Mark isn't snoring, that is).
My dose of prednisone is being slowly tapered off, and at current
levels, I am able to rest at night without the aid of sedatives. What
a relief! I do still face some of the other lingering side effects
(my cheeks are a little on the puffy side) and there are some new
ones that come into the picture with the diminishing dose (my knees and
teeth are sore, my energy levels are much lower, and I am prone to
the blues) but it's all manageable stuff.
I am also dealing with a few additional physical issues.
Most nights I get light night sweats, which bring to mind thoughts
of Hodgkin's. (I push such thoughts away as quickly as I can.)
I have pressure/pain in my chest and back pain as well.
For a couple of days I have had an earache, which was checked
out by the doctor today. (I was told I have the best looking
eardrum she has seen in a long time, so that's good news!)
I try not to dwell on the physical sensations in my body (unless they
are good)! Instead I attempt to distract my mind with happy
thoughts and activities. Some sensations are hard to completely
avoid, but for the most part I think I am succeeding at maintaining
a light-hearted disposition.
Today has been sunny and gorgeous. Mark and I strolled through Stanley
Park a bit, admiring flowers, and seeing first-hand the colour "peacock
blue". I had somehow forgotten the stunning beauty of peacocks; it
was nice to be reminded.
Later we found ourselves at Granville Island, where we wove our
way through the market crowd, and bumped into our friends Dave and
Mary Ellen (there with their baby
Rebecca). It was fun chattering with friends in the sunshine
amidst the busyness. Watching Rebecca soak up the sensory marvels
was a reminder that we should all act more like kids!
Tomorrow Mark and I celebrate five years of marriage!
Mark and I started out today with a brisk walk and 5 minute
ferry-ride to Granville Island,
where we bought some gorgeous yellow fresias! Then we spent some time
with my mom, who just got back from her trip to Denmark. I'm glad to
have her back, for I missed her. She visited me every day
when I was in the hospital, so I am used to seeing her often.
Having her back is nice. We caught up on news from distant
relatives while taking a long walk through the Reifel Bird Sanctuary.
For the book-lovers out there,
I have finished reading a couple of titles:
Twelve Weeks in Spring by June Callwood
and
A Gradual Awakening by Stephen Levine.
I borrowed from the library the five-part video series
"Bill Moyers: Healing and the Mind". Today I watched the
first one-hour segment, entitled "Chi", and it got me
thinking about the way my own approach to
dealing with cancer has changed.
When I was first diagnosed, my primary instinct was to seek
a cure, using whatever means might work. I explored
conventional medicine, Chinese medicine, various herbs and teas,
acupuncture, diet, visualization, meditation, and many
other possibilities. It rapidly became clear that no approach
offers a quick fix for everyone. Some people have found
success with various methods, but there are no guarantees
for an individual facing a particular diagnosis.
After a year and a half of living with cancer, my approach to
dealing with the disease has changed somewhat. Part of that
has to do with someone I met shortly after diagnosis,
Russell Kelly. Russell had been living with a rare sarcoma for about
three years, which was much longer than the doctors had anticipated.
He died last November, about a year after we became friends, but
not before he came to terms with his illness in a way that I admire.
I think now I
am more appreciative of the connection between
state of mind and physical well-being. I am also less driven
to find a "cure" but seek overall balance instead. Perhaps
if my mind and body are more settled, a cure will follow.
And certainly, at the very least, I will be more content in my
day-to-day affairs
if I manage to achieve something closer to a state of balance.
I can use non-traditional practices in my quest to achieve
balance while simultaneously pursuing
traditional forms of treatment like chemotherapy, the bone
marrow transplant, or radiation. Some individuals may instead choose to
strive for balance using purely non-traditional means.
It's such a personal journey.
I just got home from a pulmonary function test
(lung test, in plain old English) at Vancouver General Hospital.
I had some baseline tests done prior to the bone marrow
transplant, so today's results will be compared to those
to determine how much the condition of my lungs has deteriorated.
The tech who did the tests gave me a quick assessment of today's results.
Most of the numbers from my baseline in January were quite excellent,
so the fact that my lungs have incurred some damage doesn't matter much on
most counts. Many readings (like lung capacity) have gone from the
excellent range to the good range.
One particular set of tests was conducted to determine how well my lungs
incorporate gases from the air. Back in January I didn't do wonderfully
on those tests. (One of the chemo drugs I was given during the first
8 month course of chemo can be quite hard on the lungs.)
My performance at that time was about 71% of what they
would have predicted for someone of my height and weight.
Today my performance on the same test was about 42% of what
they would have predicted. Ouch. That likely explains why I move
at a snail's pace on my bicycle.
I will not be speaking to a doctor about these results for another
ten days or so. By then I will be just about completely weaned off the
steroids I have been taking for my lungs. (My dose has been tapered to
10mg a day already, down from a peak of 120mg!) Based on all
the available evidence, I expect the doctor to make an assessment
on whether I could readily withstand radiation treatment.
I also saw my family doctor today for a referall to an endocrinologist
(doctor who specializes in hormones). Most women undergoing the kind
of transplant I had go through early menopause as a result of the
treatment. I will have some blood tests done to determine hormone
levels in my body and to determine if, for example, my ovaries are
still functioning. Depending on what is found, hormone replacement
therapy (taking hormone pills orally)
might be recommended. This is because declined hormone levels in the
body can lead to a heightened risk of osteoporosis and heart disease.
But by taking artificial hormones, one faces an increased risk
of breast cancer and endometrial cancer. Yikes.
Hence, my inclination is to investigate natural supplements (such
as progesterone cream) as an alternative to taking drugs.
A lot of research has been done into this area recently, and
I have skimmed through a couple of informative books that suggest
some women can safely avoid hormone replacement. More on this after
I see the endocrinologist on Monday.
I received the most wonderful gift today! It's a "Medicine Quilt"
embroidered just for me, with squares made by friends from the
distribution list of friends to whom I send regular updates.
Most of the contributors have never met
each other, yet they came together via the net to make something
really special. You can see a whole bunch of pictures (taken just
hours ago!) of me seeing the quilt for the first time and link to a
web site that contains up-close pics of the quilt by clicking
here.
I had NO IDEA this was going on, so you can imagine how surprised I
was to see the finished product. What a touching, beautiful gift for
me to treasure always. It is clear that there is a story behind each
square. I invite each of you who contributed to tell me about the
"making of" ... I am just so touched!!
I'm feeling very loved tonight. I will sleep soundly and dream
about happy things!
My head is still up in the clouds after receiving that Medicine Quilt!
Over the past couple of days, I have been hearing about the stories
behind some of the individual squares. How people got their ideas,
what mishaps got in the way of the construction, things that happened
along the way ... Some folks were having a hard time keeping the whole
thing a secret for so long! It's heart-warming to think how long this
was kept under wraps. For me, the surprise was immense!
I saw an endocrinoligist today. He told me that blood test results indicate
that my ovaries have definitely shut down. Based on this fact and the fact
that I display many osteoporosis risk factors, the doctor recommends
hormone replacement therapy. However, he feels that the issue is by no
means urgent, so he is happy for me to take time to think things over
and explore other options. (In fact he recommended I do just that.)
My current feeling on the matter is that avoiding osteoporosis is
a long-term concern, but it introduces potential serious short-term
complications like an increased risk of breast cancer.
What good is it to have strong and healthy bones if I die from
breast cancer in 5 years? (I don't mean to be startling in my
use of language; my fear of coming down with another form of
cancer is real. Heck, I'm not even sure I'm done with this
cancer, and doctors are talking about risks of all kinds of
other cancers. It can be unsettling.)
For now, I will have a bone scan done to provide a baseline for
future comparisons. I will also be seeing another endocrinologist
for a second opinion.
I also spoke with one of the doctors from the bone marrow transplant
unit about my progress on other fronts. She reduced my prednisone
dose to 5mg a day, to be taken for only another week. It
will be so nice to be done with prednisone. For the past
couple of weeks, with the lower doses, I have finally been sleeping
well at night. In fact, last night I had the first dream that I can
recall in months!
She and I also spoke about my recent lung function tests. Although she
hasn't taken a close look at the tests yet, she will do so before
we meet next week. There is one set of results which indicate poor
performance in my lungs' ability to exchange gases. She feels this
would be consistent with the pneumonitis I have been experiencing, and
she suggests we keep an eye on the matter by repeating the tests later.
I will have more information after I meet with her next week.
I have had a lovely evening at home with my husband and my cat,
consuming delicious food (it is so wonderful to be able to eat the
foods I love again), soaking in the candlelight, wearing comfy
jammies, ... Now I am off to bed, maybe to enjoy some sweet dreams.
I have been feeling a little bit under the weather for about
ten days. Not enough to stay in bed, but enough to notice that
I move a little more slowly than I would like. This morning I noticed
I was even more tired. I slept all morning, and I felt an
awful headache. I took my temperature and was surprised to find
I was a steamy 38.75C!! (101.3F?) I called the bone marrow transplant
daycare unit, and they asked me to come straight down. They
drew blood cultures and checked me over for signs of infection,
but so far nothing has been found. The doctor thinks I likely
just have the flu.
So I am resting in bed, watching TV, drinking hot tea, and all-round
taking it easy. Not such a bad way to spend my time!
Well, my pace is slow and even, which isn't entirely bad.
It has been days since I have been out for a good long walk.
For the past few days, I have mostly
been sleeping and watching the rain fall from the safety of indoors.
This routine reminds me of my first few days home from
the hospital. I was so grateful to be out of my little isolation room
that I even got teary-eyed with joy as I sat at home with my cat
cuddled up on my lap, watching the rain fall outside.
The doctor I saw yesterday called to check on me today, and he
said that if my condition hasn't improved by tomorrow then I need
to come in for a chest xray and to start antibiotics. I presume
that there is no evidence of infection from my blood work, which is good.
The doctors on the transplant daycare unit tend to be conservative, however,
because they are dealing with folks like me who still don't have
sturdy immune systems. I guess the concern is that if there might be
a tiny infection hiding somewhere in my body.
Mostly I just feel like I have a bad flu, but I hope the symptoms
subside overnight so I don't have to
introduce more antibiotics into the picture.
I am dizzy, headachy, lazy, feverish, and hungry. (That last one
has got to be a good sign!)
I finished reading another book:
A Year to Live by Stephen Levine.
Heavy reading, but worthwhile.
Today I received my PhD! It was my chance to wear a fancy
degree gown and a puffy hat while parading across a stage
in front of hundreds of onlookers. I was actually first
in the degree procession. Protocol dictates that hats not be
worn onto the stage by graduands, so there I was with my thin layer of
new hair growth, leading the "Class of 1998." I am told that nothing
looked amiss from the viewpoint of the crowd.
(But then again, the people who offered me these reassurances are all my
relatives, so they would be a little biased.)
The weather for this event was absolutely amazing. The ceremony itself
was held at an indoor auditorium, but the reception afterward was
held above the rose garden amidst sun and warmth. Such good fortune
had not been in the weather forecast; in fact just yesterday
record-breaking levels of rainfall were recorded in Vancouver.
For a while it didn't look like I would make it to the ceremony.
I woke up this morning still feeling pretty crummy, and by
mid-afternoon I had taken my second hour-long nap. Because my
fever still hadn't completely dissipated, the doctor at the
bone marrow transplant daycare unit wanted me to come in. I went in
and had a chest xray taken, and bloodwork had been ordered up as well. But
nothing had really changed in my physical symptoms, so I convinced
the doc to let me go home. I promised to call or come back
if anything changed for the worse. I have an appointment with my
hematologist on Monday anyway (to discuss my overall condition and to
tackle the issue of my lungs' well-being). Until then, I hope I muster
up some strength to start taking walks again. If the weather holds up
and my flu keeps retreating, the next few days should hold some nice
times.
I have been snuggled up at home with a flu bug for a while now.
This has had an impact on my walking schedule (gotta make room for
all the extra sleep, you see) but it certainly has not made a dent
in my high spirits. Hopefully this bug will be behind me next time I
write.
I got the official word today that I will NOT be having radiation
treatment. Given the lung complication I have already faced, and
given that my recent lung function tests indicate less than optimal
performance, the risks of subjecting my lungs to radiation outweigh
any potential benefits. I have mixed feelings about this. On the one
hand I am relieved to be finished with all my treatment; I won't have
to take 6 or 8 weeks off to deal with radiation sickness. On the
other hand, this treatment was initially recommended because it
would reduce my chance of relapse ... so there are some fear issues
that crop up. No point dwelling on all this though. It's just the
way things are, so my plans are to make the most of summer (and
lots of seasons to follow) and to do my best to regain strength
and hope.
Happily, I am no longer taking prednisone! Within a day of taking my
final dose, I noticed I could see my cheekbones again. Most people
didn't think my "chipmunk" look was terribly noticeable, but I could
sure see it. One thing is for sure -- I had the roundest face of
anyone at my graduation ceremony at UBC last week. And I had the shortest
hair of any degree-recipient that I noticed. I must admit the lack of
hair made for a nice snug cap fit, though! Gotta look on the bright side!
I have not been sticking to my usual frequent schedule of making
updates to this web site. Frankly, there hasn't been much to
update. (Slept extra late today ... Had one more nap than usual ...
Watched a little too much TV ... Yawn ...)
For over a week I have been dealing with pretty bad headaches. It was
thought that I had been sporting a flu bug or two, but on top of
that I picked up a nifty headache condition that no one could figure out.
Nobody quite knew why I had the pain or how long it would last,
but by yesterday I was crawling
up the walls. The pain had become intense, and codeine wasn't
helping much any more, so Mark and I visited the bone marrow transplant
unit at VGH where they always manage to help. Dr. Kelly McCall thought
my description matched "ice pick headaches" so he called a neurologist
to find out what to do. The non-steriod anti-inflammatory he
prescribed seemed to do the trick, and now I am pain-free in spite
of the fact that I haven't taken codeine in about 32 hours!
I am also on an intravenous antibiotic (vancomycin) to fight
a pesky urinary tract infection ("UTI" -- that sounds nicer don't you
think?). The infection was noticed last
week, and for several days I was on oral antibiotics that weren't helping.
So yesterday the switch was made to something I was "guaranteed" would
make the infection go away. Unfortunately, I have to go to the
hospital every day for a couple of hours to get the IV infusion.
More news as it happens!
Today was (hopefully) my final IV infusion of antibiotics.
It looks like the UTI may be cleared up, but I will continue
taking some oral antibiotics for a few more days to be sure.
The ice pick headaches seem to be staying under control, which
makes me happy. The doctor thinks coming off the prednisone
(an anti-inflammatory drug) may have triggered the
headaches. This makes sense when you consider that the drug
which made everything better was also an anti-inflammatory.
Today I feel kind of mixed. On the one hand it's nice to have
some of these annoying health problems resolving. On the other hand,
I feel frustrated that the transplant made my body so vulnerable
to these problems, and I am eager to feel strong again. I am
also aware of sensations in my chest and sweats at night that
make me worry about relapse. But I will take things as they come.
I have a CAT scan scheduled for June 26, and then I will see my
oncologist in early July. These appointments are for
the post-transplant "re-staging"
of the cancer, where we determine if the cancer is really gone.
There is really no way to know for sure, but the CAT scan will
be the closest look taken in months, so I will be glad to take
care of that.
Today is sunny, warm, and gorgeous; perfect weather for the first
real (albeit tiny) walk I have taken in weeks. If my body
cooperates, I will be leaving on Saturday for a 6-day retreat.
During the retreat, I will have loads of time to relax, rejuvenate,
and introspect, so I am looking forward to the opportunity!
I'm off to the retreat until Thursday! It's a gorgeous sunny day,
and although my icepick headaches returned with a vengeance last night,
I am determined to have fun this week. I will write when I return.
I can hardly believe almost four months have passed since my transplant.
While I have had periods of strength during my recovery, I have
mostly been dealing with a string of physical challenges. I feel
like the past several weeks have been consumed by illness and recovery;
it all seems like a hazy fog of memories.
Flus, colds, wicked headaches, chest pains, back pain, night sweats,
low energy, doctor visits, intravenous antibiotics, seemingly one thing after
another. As overwhelming as it has been, I am determined to
get through all of this. I have a CAT scan on Friday and a visit
with my oncologist at the cancer clinic a week later. I hope some
looming fears will be put to rest at that time.
During this past week, I had the immense pleasure of participating
in a Callanish healing retreat! For five days I was showered in
soothing attention along with seven other people living with cancer.
The seven facilitators
cooked our food, did our dishes, made our beds, rubbed our backs,
played music for us, sang with us, listened, shared, cared, and did
a zillion other things that made each of us feel loved.
The retreat location was a Buddhist retreat centre near Whistler
where we were immersed in nature. The house overlooks the emerald-green
"Daisy Lake", with glacier-capped mountains in the distance. Wildlife
surrounded us during our visit. I had encounters with hummingbirds,
eagles, and creatures that made strange sounds in the night.
I have been involved with Callanish Healing Retreats
ever since I first attended a retreat
more than a year ago. One of the ways in which I have been trying to give
something back to the charitable organization is
by building their web site
which is finally available for public viewing!
Today was the first time in ages that I felt up to attending a relaxation
group I often go to at the cancer clinic, and I brought along my lovely
quilt (to show off)! I suspected that the members of that group
would fully appreciate the magnitude of this gift, and indeed they were
each quite touched. I can still hardly believe that quilt is real!
For those who are interested,
I have read a couple of books recently:
Random Acts of Kindness by Conari Press (ed.), Dawna Markova,
and Daphne Rose Kingma and
Healing and the Mind by Bill Moyers.
Great news: my CAT scan today came out CLEAN! There is no evidence
of active Hodgkin's disease in my chest or abdomen. The fact that
I have had worrisome symptoms like night sweats and pain is probably
somehow related to all the hardship my body has been through with
the transplant.
Mark and I would have headed out to celebrate tonight, but I am still
stricken with serious headaches. I have referals to both a pain
specialist and a neurologist. With their help, I am hoping this will
all be resolved soon. Meanwile I have a great excuse to stay in my
pyjamas all day watching Bob Newhart reruns on TV. ha ha!
Wow, today marks exactly four months since my transplant. What a
perfect occasion to discover that pesky cancer is in Remission.
(Am I officially allowed to use the "R" word?! I hope so!)
I am sitting on my bed watching the pinkish effects of a gorgeous
Vancouver summer sunset. Music from the annual Jazz Festival
is floating in through an open window, reminding me that I was sitting
in this exact spot a year ago today. The same Jazz Festival was
on a year ago, at which time I was still undergoing chemotherapy
treatment for my first instance of Hodgkin's. At that particular
moment, I was lucky to be at a place in my chemo cycle where
I felt well enough
to go outside into the summer air with my husband and dance to the
music in front of the Jazz Festival's open-air amphitheatre!
My headache today precludes any sort of dancing, but my heart
holds the same lively spirit it did a year ago today. I feel happy
as I sit here listening to the music from my comfortable perch!
I have read two intriguing books over the past couple of days:
Natural Woman, Natural Menopause and
What Your Doctor May Not Tell You About Menopause.
I read these books because the bone marrow transplant
resulted in chemical menopause for me. Many of the hormones that
would have circulated naturally in my body for the next 20 years are no
longer present (due to ovary damage from the
chemotherapy drugs). Unless I take steps to
replace these hormones in my body, I will face a
greatly increased risk for osteoporosis as I age (among other
things). Therefore,
the endocrinologist I recently consulted recommended "hormone replacement
therapy" (HRT) - prescriptions of synthetic estrogen and progesterone
taken orally on a daily basis.
Most women who go on HRT do so around the age of 50, and they
typically only take the drugs for a year or so, just to get through
what can be a rough transition period. The recommendation was for
me to take the drugs until what would be a normal age for menopause,
about 20 years from now. Because of the unusually long
time period involved, I decided to do some research.
(The endocrinologist agreed that there would be no harm
in delaying my start of the drugs for as long as a year while I
investigated various options.) What I discovered shocked me!
There is a common belief that HRT may increase a woman's risk
of breast cancer and endometrial cancer, but the standard
rationale for exposing women to these risks has been the offsetting
reduction in osteoporosis risk (which is a profound concern for most
post-menopausal women). As it turns out, natural hormones
don't pose the increased risks of cancer and they simultaneously provide
better protection against osteoporosis than sythetic hormones do!
The reason synthetic hormones have gained such prominence has to
do with the fact that the natural compounds cannot be patented.
(By introducing slight modifications to the chemical structures of
natural hormones, drug companies can patent and profitably market
the compounds. Surprisingly, with only slight differences
in chemical structure from their natural counterparts, the
synthetic hormones can cause profoundly different effects in the body.
Many of the undesirable side effects caused by the synthetic hormones,
including the higher risks of cancer, are virtually nonexistent
with use of the natural compounds.)
With an aging population, drug companies have had tremendous profit
incentives to promote artificial hormones. It saddens me to think this
has been at the expense of women's health. Drug companies
have created an environment in North America whereby
synthetic drugs are routinely adopted in place of the less-expensive
and more-effective natural hormones.
In parts of the world beyond North America, synthetic hormones
do not enjoy such prominence.
My headaches persist, though the intensity may be weakening.
The neurologist I saw last week suspects I may be dealing
with neuralgia, pain in the nerves. The pain specialist
I saw last week agrees with the neuralgia hypothesis. She
said this sometimes occurs in patients who have been immuno-suppressed
(like someone with Hodgkin's, and like someone
undergoing a bone marrow transplant). It can last 6 weeks,
3 months, and even longer; there is no way of knowing. And
unfortunately, there are few treatment options.
I am currently taking a nonsteroidal anti-inflammatory drugs
(hard on the stomach) as often as twice a day. I also take
codeine for occasional pain. Its relief only lasts a few hours,
so it is not feasible as an on-going pain reliever (plus it has other
undesirable side effects). For on-going relief,
I am starting to take amitriptyline,
a pain reliever commonly prescribed to treat fibromyalgia.
This drug does not offer immediate pain relief; one must take it
for several weeks before its effect starts to kick in.
And then it is recommended
that the drug be continued for about 3 months before attempting
to taper off.
Today is the first day in ages that the headache pain hasn't been incredibly
intense. Hopefully the effect of the amitriptyline is starting to
show. I had a CAT scan taken of my head last night, just to rule out
anything bizarre. Hopefully I will see the neurologist next week,
and he will have some helpful recommendations.
I spent most of yesterday and today trying to find some direction
in my attempts at hormone replacement. I am still astounded by the
fact that conventional doctors are skeptical of natural hormones.
Hopefully, in time, more work will be done to establish the
validity of using natural hormones over synthetic. It certainly
seems sensible
to me that one would want to replenish that which is naturally found in
the body, rather than using a drug which is close to the natural
hormone but dissimilar in arbitrary ways. Anyway, with the help of
oodles of books, my naturopath, my aunt in England, and my own
instincts, I am getting closer to where I want to be. And I am
in hot pursuit of referrals to a couple of sympathetic doctors
here in Vancouver.
Other than managing the headaches and attempting to get my hormones in
balance, I haven't been up to much. Taking care of mundane errands,
trying to help where I can around the house, eating fresh berries (I love
fresh berry season!!!), playing with the cat, catching the
occasional movie with Mark ("The Last Days of Disco" -- written, directed
and produced by Whit Stilllman; I'm a big fan -- and "The Opposite of Sex" are the
two we've seen most recently).
The weather in Vancouver has been incredible, which sure helps keep
my spirits ups. Today is rainy and cool, but this makes for a nice
(temporary!) change. Our friends Christina and Murray kindly offered
us the use of their condo at Whister at some point this summer,
so Mark and I are looking forward to that getaway!
This is the first time in ages that I am feeling confident enough
to think about the long-term future again. For months my body
limited the boundaries of my imagination. Now that I have had
a clean CAT scan of my chest, I feel somewhat revitalized. The fears and
worries are still on my mind, and my body is still in pain, but
my mind seems freer to explore exciting ideas once again.
It is promising to think about growing old and being a thorn
in Mark's side for many years to come, exploring parts of the world
I love and seeing places I haven't yet been, becoming a person
who makes a valuable contribution to her community ...
This morning I went to the relaxation group at the Cancer Agency.
More than a year and a half has passed since I first started attending
on a weekly basis. Lately my headaches have prevented me from being
part of that circle
as often as I would like, but I somehow managed to drag myself there
today! It was terrific to see the familiar faces of the facilitators and
the participants with whom I have become friends.
Although I knew it in my mind, it was surprising to see that my friend
Debbe is bald from chemo again. She is facing her second relapse of
ovarian cancer, and I admire the bravery with which she is carrying on
with her life. Debbe and her husband Peter have somehow managed to
sustain a very active social life over the past weeks, in spite of the
chemo. I haven't come anywhere close to keeping up with her during this
time! Mark and I had to miss a barbecue in their backyard
and a live play (in which Debbe was performing). I am hoping
that we manage to make it to the picnic they've organized for late July.
I love getting out, especially with the sunny summer weather, but it's
tough when my head and neck are giving me so much trouble.
The amitriptyline I take every night before bed hasn't yet started providing
me any pain relief. Tonight I will be increasing the dose for the
second time. Maybe I'm getting closer to relief. Meanwhile, I continue
to try making the most of things.
Last night I loaded up on codeine so Mark and I could make it to
a barbecue at our friends Janie and Daphne's place. A couple of
friends from Callanish were there, as well as Daphne's sister and
brother-in-law (Deidre and John) and their two adorable kids from Ontario.
Earlier this year, John made a very sizable donation to
Callanish; the largest donation Callanish has ever seen, in fact.
And John is a man of modest means whose wife is expecting their third child!
The barbecue was organized by Janie and Daphne to recognize the
generosity of John's gift, with past retreat participants present.
It is so uplifting to see such acts of kindness taking place
in a world seemingly so full of pain and senseless acts.
Today Mark got a phone call from the bone marrow registry. He
is a potential match for someone needing a transplant! He has
matched on the first four criteria considered. The registry typically
contacts potential donors at this point (to confirm continued
interest) before continuing to test for a match on the two final criteria.
I have heard of transplants taking place with only four of the six
criteria matching, but it is usually preferred to have five or
six criteria match, to decrease the likelihood of graft versus host disease.
It may be another month before we hear back about Mark's potential donation.
(If anyone would like more info about becoming a bone marrow donor,
check out these links:
Local Information Sessions for Becoming a Bone Marrow Donor
and
International Information about Becoming a Bone Marrow Donor.)
I am incredibly impressed by Mark's willingness to put his marrow
on the line. Having gone through all kinds of bone marrow related
procedures, I have to say that the least painful or uncomfortable
is the harvesting of marrow, which is what a donor would go through.
If the retrieval is done "peripherally", one just gets a few injections
of a marrow-stimulating drug and then cells are collected with an IV
needle (it's much like donating blood). If the retrieval needs to be done
directly from the bone, less common these days, it's a quick
operation that leaves most people with the sensation that they've
been kicked in the rear. (When my own marrow was retrieved in this
manner in February,
I was walking around and laughing later the same day, in spite of
the fact that I was fairly weak and sick from the cancer.)
Regardless of the method chosen, the marrow retrieval is
a medical procedure, so I understand why some people
feel scared or apprehensive about registering to donate.
My brave husband has put any of his own ambivalence
aside as he does what he can to potentially salvage someone's shattered life.
A couple of friends, Shannon and Mary, have made the same commitment
by putting their own names on the bone marrow registry. (And I would
bet several others have done so without telling me.) What a gift!
I got a phone call today from Vancouver General Hospital's CAT scan
department. The neurologist I saw last week sent me there for a CAT
scan of my head, which was done on Thursday. The radiologist who
viewed the films today decided that I need to come in for finer,
more detailed scans. The appointment has been set for Thursday at 9am.
(Please, think good thoughts for me.)
This turn of events automatically sets my mind to worry-mode. Why do
they need finer detail? What do they think they see? My head hurts
a heck of a lot more than it should for something minor; I sure hope
nothing serious is going on. I won't find out for days ...
Mark reassures me that after a bone marrow transplant, lots of things
can go wrong, and not all of them are serious. I sure hope whatever
the CAT scan reveals is manageable, and I hope it leads to resolution of
the pain which is wearing me tired.
Well, I am happy to report that the most recent set of CAT scans,
done this morning, showed nothing troublesome. The radiologist
present told me that scans done last week showed an anomaly that
needed a closer look. I saw the films, and the anomaly was a
big white dot (about 1cm in diameter) amidst the gray of a lobe
at the back of my brain, on the right side. It was suspected that
it may have been a harmless, though abnormal, vein. Another suspicion
was that it could have been a harmless calcification. The first
set of scans taken this morning ruled out the second possibility,
and subsequent scans confirmed the first possibility. Phew.
I didn't even want to know the other possibilities.
While I was in the hospital this morning,
I noticed a young man lying on a stretcher,
wearing a mask, and hooked up to four IV pumps on the pole
beside him. I realized he must be from the Bone Marrow Transplant
ward which was my home for 23 days not so long ago.
I stopped and chattered with him, taking off my hat to show him
how much my hair has already grown back. He asked if I'm okay
now, and I told him that yes, I'm in remission. I tried to give
him hope to get through what has yet to come. He must still be
in the early stages of his stay at the hospital; it looked like
he was still getting his chemo (he still had his hair).
It is nice looking back sometimes, realizing where I was and where
I am. I think it is also important to acknowledge that people go
through the same sort of experience all the time. I needed to be
reminded how it felt to sit idle in a hospital corridor, armed only
with a mask to protect my precariously balanced life. And I needed
to remind someone in that same position that there is light at the
end of the tunnel.
I am still left without a confirmed explanation for my headaches,
but at least I can be pretty sure I don't have brain cancer!
Over the past couple of days, I have kept my mind preoccupied by
reading a terrific book, which I just finished this morning.
It's called Fall On Your Knees by
Ann-Marie MacDonald. Before she died, my friend Gayle had told me it was
a good book. Then when she died she left it to me.
Another book I have just finished reading is
Dr. Susan Love's Hormone Book
by Susan M. Love, M.D., with Karen Lindsey.
I plan on making that the last hormone book I read. I think I
am getting closer to finding the appropriate course of action
for me to take. Last week, my family doctor was willing to prescribe a
combination of three natural human estrogens (commonly called
tri-est), which I have been using in conjunction with a
high-concentration progesterone cream. In place of the tri-est,
I may be better off using
only one of the estrogens, namely estriol, the only estrogen
which is unlikely to lead to an increased risk of breast cancer.
I have an appointment next week with a doctor on the North Shore
who is said to be a "menopause expert". We'll see how comfortable
she is with non-pharmaceutical approaches.
I just finished reading Alias Grace,
a great novel by Margaret Atwood. Lately, reading has made for a wonderful
escape. My headaches and neck troubles are least noticeable when I
am comfortably reclined with a book in hand. I often drift off for a nap in that
position (which should be taken as no reflection on the quality of
the reading material!), an outcome that is probably quite conducive to my
recovery.
The neurologist I saw two weeks ago has reviewed the CAT scans of my
head, and he called this morning to say he has nothing constructive to
offer me. I am considering
seeking a second expert opinion, just to verify that these headaches
have no remedy except time.
My social activities have been pretty limited,
but I have managed to go out for a couple of happy events in
spite of my neuralgia. On the weekend,
Mark and I went with my mother to see family friends that have known
me forever. In fact, these friends first met my mom and dad before
they even knew each other! Last night, Mark and I went out for Mexican
food with a friend who is visiting from Portland. It has been tough
to do anything socially, except for last minute stuff. But I rarely regret
it when we do manage to get out.
I took myself outside for a short walk yesterday. As I started walking,
I noticed refreshing, light raindrops on my cheek. The air was cool,
but not uncomfortable. I felt kind of liberated, wandering around on my
own, with no restrictions ... For a while, if I held it just right,
my head didn't even hurt. I inhaled the sights and sounds of
summer along the sea-wall for a few minutes. Then I returned to my safe
haven for more rest. As time goes on, I am sure I will get out for more
interesting excursions, but for now it excites me to experience even a little
taste of what people do when they are well.
Mark and I have this paranoia
about our cat escaping into the hallway, without us noticing,
whenever we come or go through our front door. We worry that
she will lurk out there unnoticed until the elevator doors
open, luring her inside, and scooping her away from us forever.
Of course this is
a somewhat far-fetched notion, but that doesn't stop us from
mentioning the grave danger to our friends who house-sit for us.
Once in a while, Macska does sneak into the hallway, but so far
we have always noticed immediately, and she has been quickly corralled
back into the safety of our apartment.
Well, last night something bizarre happened! I heard what sounded
like a meowing cat, and my first thought was that Macska might
be trapped somewhere. I found her lounging in her favorite
warm spot on top of the computer monitor, oblivious to the world.
By then the strange noise had
stopped, so I carried on with whatever I was doing.
About an hour later, I was heading out of the apartment, and
I found a cute white kitty just outside our apartment door!
That explained the meowing!
I had never before seen this cat, and I had no idea whose it
was. I knocked on the door of neighbours who have two cats, but
there was no answer. So I tried the doors of other neighbours
on our floor. The people who live next-door to us opened their
door, and were surprised to find me holding the cat they are
taking care of short-term! They hadn't noticed the cat sneak
into the hallway, and were grateful to have the little guy
returned to them. Satisfied by the happy ending, I headed out for my
meeting.
I returned home a couple of hours later, and got comfy with Mark on the
couch in front of the TV. Both of us heard a strange noise, similar to the
one I had heard earlier.
I knew immediately that it was the sound of a cat meowing
in the hallway. I opened the
door to find a different cat looking up at me! I tried
knocking on the front door of the neighbours who claimed the last
cat, thinking they could be taking care of two cats, but there
was no answer. I tried the door of the neighbours I know to
have two cats, and indeed this was one of theirs. I think it is
so bizarre that this would happen twice on the same night,
when it has never before happened during the year and a half
we have lived here.
Now we have real-life experience as a basis for being so
irrationally paranoid about our own cat getting out!
It looks like the medication for my headaches is finally starting to
have an effect. I was told it would take two or three weeks to kick
in, and what do you know, it has been two and a half weeks since
I started taking it every night. The headache
pain has not been totally eliminated, and I am still
having trouble using muscles in my neck (you know, the ones that
let you turn your head even the tiniest bit?), but I see definite
improvement. In fact, tonight, my biggest complaint was a pain
in my back around my left shoulder. Sigh. I have been seeing massage
therapists to try to get the shoulder situation under control, but it is still
bugging me a lot. Tonight I took a couple of codeine pills so
I could enjoy a few pain free hours. (I am sooooo sick of always
having something hurt!) It was great to be pain-free for a while;
I had a big smile on my face!
We took advantage of tonight's pocket of pain-free
time to go visit our friend Debbe
in the hospital. She had a surgery for a bowel blockage earlier today,
and she is doing really well tonight. I was surprised to learn that
she will now be living with an ileostomy, which will not be easy for
her. Mark and I both admire her strength and courage.
Last night I had trouble falling asleep, which is unusual these days.
Thanks to the amitriptyline, most days I have no trouble with sleep; in
fact, I often sleep in 'til 10am, and take a long afternoon nap as well.
But last night I was unsettled.
Thankfully, the headache pain is more manageable now, but I still can't move
my neck very much. The back pain is still pretty bad most days
(though massage sometimes helps) and for the last few days
I have experienced a new pain in my left hip late at night.
The pain in my hip was more intense than anything else as I tried
to sleep last night, but together with my sore back and sore neck,
there was no way I could sleep. I took some codeine for the pain
and some ativan to help me sleep, and then I stayed up for about
an hour, finishing a novel I was reading.
I felt pretty depressed until I got the book open. I shed a few tears
wondering how
I could continue to endure this pain, day after day, more pain and more
pain. It seems to me that I have been in some kind of pain for most of the
past 2 years. I am frustrated and eager to feel healthy again.
This morning, I had a follow-up lung function test, and my performance
was even worse than the one I had six or eight weeks ago indicated (right
after the pneumonitis episode). I will find out tomorrow what this
means, exactly. But it sure isn't great.
Good thing it's a sunny day this morning. I should get myself out there
for a walk to clear my mind. I am loving all the reading I have
been doing. The book I finished last night is called
Echoes
and
it was written by an Irish author, Maeve Binchy. My friends Mary and Keith
in Calargy sent me several books by this author when I was getting ready to go
into the hospital.
Mark and I had a nice visit yesterday
with Keith (from Calgary) and his two year old Terry,
along with Dave and Mary Ellen and their one year old Rebecca.
We all hung out together at a neighbourhood playground for a while,
where there were all kinds
of happy kids. Mark and I were mesmerized by the playground culture;
there were all sorts of kids and their parents interacting, playing together,
sharing, not sharing, and basically spending their time together. It
felt like community. It was nice!
Today has just been a little bit too real for my taste.
It all started with a routine follow-up
doctor's appointment at the bone marrow transplant
unit. I told the doctor about all my recent aches and pains, and
since all my CAT scans and such haven't provided any answers,
all she could offer was to have me go in for a neck x-ray.
The many other doctors I have seen have ruled out
other avenues as sources of my headaches and neck pain.
If the x-ray found something out of whack in my neck, it could explain a lot.
The doctor also thought I looked a bit pale, so she ordered up some blood
work.
I went over to main hospital ward for the blood work and the x-ray.
While Mark and I were waiting for me to be called in for the x-ray,
I felt incredibly overwhelmed by everything that's going on for me.
I am just fed up with the
pain I have been dealing with in my head, neck, back, and now
faintly in my chest too (which brings up all sorts of old familiar fears).
While wallowing in my misery, I noticed hospital in-patients
on their stretchers or in their wheelchairs, also waiting for x-rays.
I noticed one fellow who had a bag of urine hanging near the
wheel-base of his stretcher, a predicament which must be a little
humiliating. Others were waiting ages for
porters to cart them back to their wards. One guy's body was curled
over in his wheelchair and he was unable to control his bodily movements.
As if all that wasn't enough to make me feel hopeless and miserable
about the medical system and the lack of dignity associated with
many people's final days, a fellow in a stretcher started making
strange noises. As he attempted to breathe, he made sounds
like thunder. I thought
for sure this was the "death rattle" that I have been told can be
heard emanating from the lungs of people in their final moments of life.
I rushed to his side, and saw the fear and sense of helplessness
in his eyes. I tried catching
staff members to alert them to the problem, but no one seemed to care.
Mark ran to tell the x-ray reception staff, but still it seemed
that no one could be bothered. I sat holding the poor man's
hand as he wheezed for air. Finally,
a hospital worker who was sitting in the x-ray waiting room came over
and noticed
that the fellow's oxygen tank was empty, and she darted off to get a refill.
Meanwhile, doctors and technicians passed by without showing
any concern. The man motioned that he wanted to write, so I got
him paper, and Mark lent him a pen. He wrote "orderly?" at first,
conveying that he was anxious for an orderly to bring him back up to
his ward (presumably where there would be some nurses and doctors equipped
to help him). When I told him I thought the orderly would be here soon,
he looked exasperated.
He wrote "I am getting desperate." I felt so helpless.
The oxygen replacement arrived and was installed, but the noise
continued along with his difficulty in breathing. His tracheal
opening was filled with phlegm -- no wonder he was gasping for air.
Soon thereafter someone with some medical knowledge came along and
arranged for immediate suction to remove the man's phlegm. That
was about the time I got called in for my x-ray. Mark, who
remained in the waiting room during my x-ray, assured me that
the man ended up getting all the help he needed.
When Mark and I got home, I was already feeling pretty drained.
There was a phone message from the doctor I had seen earlier, asking
me to call her. I called her right away, and she told me that my
blood tests indicated that my hemoglobin was really low. Until
recently, my hemoglobin had been hovering just on the brink of
normal, at 120. Today the reading was 79, and she told me I am
booked for more bloodwork and a double blood transfusion tomorrow.
I thought my transfusion days were over.
Normally I try to be strong and optimistic, but tonight I'm feeling
pretty emotionally frail. On top of all the other stuff I'm dealing
with, I have this new issue thrown in. Mark tries so hard to soothe
me, but my mood is just black tonight. It seems like new challenges
keep emerging, even though I don't feel strong.
Sometimes I just feel like escaping from my body. I want to run
away to a place where there is no pain, where I can forget what
ails me. But wherever I go, my body comes. I can imagine how
people become hooked on pain-killers. Me, I try to keep my
pain-killer intake to a bare minimum. Sometimes I just can't
take the sensation though, and I have to pop a pill or two.
With all the time spent in hospital waiting rooms, I have
finished reading another book:
She's Come Undone by
Wally Lamb!
I am feeling a lot better than I felt last
night, when I wrote that last entry. I spent
most of this afternoon at the bone marrow transplant
outpatient clinic receiving two units
of red blood cells, and that gave me a real energy boost.
My brother came along to the hospital
to keep me company for the first couple of
hours, and Mark spent the last hour or so
with me. The doctor I saw yesterday was there
waiting for me when I
arrived, and she hung around until my IV was started so we could
talk. She says that there are several possible
explanations for my sudden drop in hemoglobin.
The first possibility, and the least
worrisome, is that the anti-inflammatory drugs I have
been taking occasionally for my headaches have
caused some stomach bleeding. A
second possibility is that I have a stomach
ulcer caused by bacteria. To distinguish
between these two possibilities, the doctor
recommends a stomach endoscopy. Yuk. Less
likely possibilities include a problem with
my bone marrow's ability to produce red blood
cells, relapse of the Hodgkin's disease,
and abdominal cancer of some form. All of those
are pretty ugly to think about, but they are
not very likely (given my clean CAT scan and
lack of other symptoms). It is awful to even
think of these possibilities, but I guess the doctor felt
obligated to mention them. She was pretty
graceful in the way she handled things. I must
say I like my new hematologist! (Yesterday was the first time
I met her.)
Although the doctor recommended an immediate
endoscopy, I requested that we try
treating the first possibility (stomach
bleeding caused by a drug), then see in a few weeks
if my hemoglobin count has recovered. The
endoscopy would have to be done as an outpatient
surgical procedure, much like the
bronchoscopy I had done a couple of months ago. So
clearly I would like to avoid it if I can.
Happily, the doctor was agreeable to waiting. But
if my counts don't recover in a few weeks, I
will have to have the endoscopy done. If that
procedure rules out bleeding from the stomach,
I will have to have another bone marrow
biopsy done, something I would like to
avoid almost at any cost. Ugh. I have had two of
those done since this whole cancer ordeal
began, and I aim never to have another.
Anyway, today's blood transfusion has given me more
energy already. My cheeks are
back to their usual rosy self! Looking through a
write-up about anemia last night, I
realized I have every single symptom possible!
Thank goodness this was diagnosed
now. I presumed my recent dizzy spells were arising
because of the amitriptyline I take every
night for the headaches. How wrong I was!
I also saw my family doctor this morning, and
she prescribed a different pain killer for
me to take (percocet), to help me deal
with my severe back and neck pain. She asked me
to be more diligent about taking the
medication regularly so my quality of life isn't so
compromised. She is right that times have not
been too exciting for me lately; mostly I have
felt confined to home. She says there is
no reason that has to be the case. I guess she is
right! So I may be hopped up on narcotics
for the next while, but at least I will be getting
some exposure to sunlight. And I'll get some
more exercise too. Oh, one more thing: I will
be starting physiotherapy tomorrow as well, to
help ease my muscles back into the real
world!
Thank goodness for patient family and friends,
who listen to my woes and hold my hand
when I am scared. I can't believe five months
have passed since my transplant. I feel like
time has flown by in a blur. Once again, I
feel hopeful that this difficult patch will soon
be behind me. What a difference compared to how I felt last night.
Oh yeah, one other piece of news (and it's good news).
The fact that my hemoglobin count is so low likely explains my poor
performance on the lung function tests I had a few days ago.
The notion that my diffusion ability has declined was based
on the assumption that my hemoglobin count was normal, 120.
Having a lower count causes poor diffusion, even with healthy
lung tissue, so there is a good
chance that the tissue in my lungs has actually remained unchanged
or even improved since my last set of tests! I will find out for sure
next time I talk to the doctor.
I am determined to get myself back in shape, strengthening muscles
that have become incredibly weak (and hopefully eliminating the
aches and pains I have come to live with).
I had my first physio session today, and it looks like we are
starting at ground zero. The exercises I was asked to do are very
basic: lifting my left arm and bending my head forward. I'm
telling you my muscles are in a very bad way! Hopefully my progress
will be quick so I can move on to more challenging stuff. I am
eager to get more active outdoors again, and I am looking forward
to pulling my weight domestically again soon. (Mark is a great cook,
but he is not quite as, um, innovative as me in the kitchen. I figure
it's about time we added a bit of variety to our meal repertoire again.
I have become a little bored by the food we eat, but then I'm just
notoriously fussy!)
So all in all, I am feeling much better today. My spirits
are up, and I have hope that my body will be feeling better soon
too.
Physio seems to be yielding some good results! The range of motion
in my neck has improved a great deal, and I have found a tool that
shows promise for alleviating my back/chest/arm pain (yes, now the pain
radiates down my arm too). Yesterday, my doctor concluded that my
pain is consistent with shoulder muscle spasms pinching a nerve that originates
at the T3 joint in my spine. She thought TENS therapy might help in this
case, and after today's physio using TENS, I have to agree.
(TENS stands for
Trans-dermal Electrical Nerve Stimulation, and it gets endorphins
circulating in your body using gentle electrical stimulation.)
I am renting a TENS machine for a week,
and if it works out as I suspect it will, I plan to buy a unit. My
extended health covers this benefit, if prescribed by a doctor,
so I consider myself very lucky.
Yesterday
I mentioned to my doctor that I have some splotchy blood blisters
appearing on my skin lately, and she sent me to have my platelets
tested. We found out today that my platelet count is well below
normal. (My count is 97, and the normal range is 150 to 350.) In conjunction
with my recent depressed hemoglobin count, this is definitely not good news.
I will be having more blood tests on Friday. The big fear running
through everyone's mind is that these symptoms are indicative of
bigger bone marrow troubles. It never turns out to be a happy occasion
when my doctor calls me at home with news that can't be given an
optimistic spin. I waited to hear my doctor say "Oh, it's
probably nothing," but she said nothing of the sort. In fact, she
felt sufficiently concerned to call and alert my oncologist. My plan is
not to worry about this until there is a concrete reason to worry.
This may sound bizarre, but I am going to write it anyways. If
I find out on Friday that there is likely a problem with my bone
marrow, I don't think I will be willing to submit to a bone marrow
biopsy. Having already gone through two bone marrow biopsies,
I feel strongly that
I never want to go through another. If I was to go through with
a biopsy and the results indicated that I need further chemo or
other invasive treatment, I am pretty sure I would decline anyway.
I say all of this with the realization that I can always change my
mind ... but knowing the fragile state my body is already in, and
knowing how brutal further treatment could be, I just don't think
I could do it. There comes a time when quality of life dominates over
other issues, and I think I may be getting close to that point.
Copyright 1997, 1998, All Rights Reserved.
Monday April 20, 1998:
Tuesday April 21, 1998:
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Friday April 24, 1998:
Monday April 27, 1998:
Friday May 1, 1998:
Saturday May 2, 1998:
Monday May 4, 1998:
Monday May 4 (later):
Tuesday May 5, 1998:
Wednesday May 6, 1998:
Thursday May 7, 1998:
Monday May 11, 1998:
Wednesday May 13, 1998:
Friday May 15, 1998:
Saturday May 16, 1998:
Sunday May 17, 1998:
Monday May 18, 1998:
Thursday May 21, 1998:
Friday May 22, 1998:
Monday May 25, 1998:
Tuesday May 26, 1998:
Wednesday May 27, 1998:
Thursday May 28, 1998:
Monday June 1, 1998:
Monday June 8, 1998:
Thursday June 11, 1998:
Saturday June 13, 1998:
Monday June 22, 1998:
Friday June 26, 1998:
Saturday June 27, 1998:
Friday July 3, 1998:
Monday July 6, 1998:
Tuesday July 7, 1998:
Thursday July 9, 1998:
Tuesday July 14, 1998:
Thursday July 16, 1998:
Thursday July 16 (later):
Monday July 20, 1998:
Tuesday July 21, 1998:
Wednesday July 22, 1998:
Thursday July 23, 1998:
Wednesday July 29, 1998:
