I have to say I am incredibly grateful that things have continued to
improve this past week. I have been derelict in my duty to keep this
web site regularly updated, but everything has just felt so overwhelming
until very recently. Now that I am starting to see tiny improvements
in so many aspects of my health, I have hope that the trend will continue,
and someday I will regain my old strength and confidence.
For so long, it seemed like I would never return to my old self.
I was beginning to feel like I was on a permanent downward spiral. I
didn't want to be negative or pessimistic, but it was so hard to
be bright and sunny with in the face of so much adversity.
Yesterday, I was on my own (no Mark, and no car), and after my morning
physio visit, I
walked home across the Cambie Street Bridge from the vicinity of
Vancouver General Hospital! It took me about half an hour, and
I kept up a slow but steady pace. This is the furthest I have walked
(by far) in months. It felt like a tremendous accomplishment!
I can only hope that things continue to improve. I'm doing my best
to make sure it happens. Soon I will start a comprehensive six week
rehabilitation program at my physiotherapist's clinic.
Tonight I had a surprise visit with a bunch of friends from high
school! Four of my old buddies met for dinner at a restaurant a
few blocks from where I live, and I got a phone message from one
of them that they were hoping to stop by to visit me after their meal.
Well, I surprised them by stopping by the restaurant for a visit!
They were a little shocked to see me up and around! It was terrific
to catch up a little. I hadn't seen Tracy or Shelley in years, and
Tracy just got married about a week ago. Christina and Shannon I've
seen recently, but it's always nice to see them again.
Mark walked me there, and sat at Starbucks 'til I was done.
While we were walking home together, we bumped into one of our neighbours
from our apartment building. It's someone we don't know very well; in
fact I didn't even recognize her. She sure recognized me though, and
she was very happy to see me walking around. She said, "Are you
feeling a little better?" I smiled and said, "Yes," and she got all
excited and gave me a big hug! What a sweet woman! I don't even know
her! As we continued walking home, Mark told me that she had
asked him how I was doing in the past. I felt so warm and
reassured to know that in this hectic, crazy world, even strangers can care.
Today was a busy day with an early start, but it was a little more
manageable given how much better I have been feeling lately.
I had two physio appointments, I attended my relaxation group at the
cancer agency, and I had a blood test for my hemoglobin level (it's up
to 105 now, probably thanks to the hemoglobin-boosting injections
I have been doing).
My neck is really sore tonight, probably because I have been pushing
it a bit. This upcoming long weekend should be a nice restful break.
Mark and I hope to take in a movie or two, but otherwise we have
no challenging plans. It's raining, so I won't be breaking any distance
records for walking. Come to think of it, yesterday's long walk likely
has a lot to do with my sore neck!
Tomorrow morning I have an early appointment with my dermatologist.
I don't expect he will have any new solutions for my itchiness. I have
been taking a drug called doxepin for about 10 days, and it doesn't
seem to reduce the itch, but it does knock me out so I can get a full
night's rest. That's really important right now. Without proper rest, there
is no way my body will heal; before the doxepin I was sleeping really
badly. Yesterday I started ultraviolet light therapy
which is supposed to help unexplained itchiness. (Don't worry, there is
no risk
of me getting a tan on this pale face, or more freckles. It's part of the
*burning* spectrum that they use. Great! Get this though ... They only
expose me for NINE SECONDS at a time though!)
Where I am, the moon has looked incredible for the past few nights.
The other night it was like a big orange ball, low on the horizon (which,
for some reason, always makes me think of the Charlie Brown Halloween
specials I watched as a kid!). I hope that wherever you are, you can see
the glorious harvest moon tonight (or soon).
It's Canadian Thanksgiving, so things are pretty quiet around here. Mark and I
have had a pretty lazy weekend. We saw a matinee on Saturday (ANTZ) which
was fun.
We stuck around home yesterday, and my mom came by for a visit late
in the afternoon.
Today it's pouring rain, but it's nice to sit by the window watching
birds and hearing the sound of the raindrops.
I saw my oncologist for a follow-up visit yesterday, and she was so
surprised at how much better I am doing. (People can tell I'm doing
better just by looking at me lately. Three weeks ago I was pale,
tired looking, and messy! Now I'm looking more energetic, and there is
a smile on my face!) My hemoglobin has come up to an astounding 125.
(It's in the normal range now.) I will keep injecting the drug
that boosts red blood cell production until it hits 140, and then I
can stop. I can really feel the difference from the increased count -
I have tons more energy and my mood is much improved.
I spoke to Julia in Ottawa this week. She and her family are still
waiting for news on the pathology of the tumour taken out of baby Liam last
month. It seems to be taking forever, but the surgeon says there is still
no news to report.
The cloudy and rainy morning I woke up to magically transformed into
a gorgeous sunny afternoon. While Mark and I were down by the
waterfront inhaling the fresh air, we discovered how gusty the wind was
and we marvelled over the choppy ocean water. It was
simply gorgeous out today.
I am having a quiet, solo evening at home while Mark is out with
an economics professor from his undergrad days at Queen's University.
I was invited to come along tonight, but I anticipated that
the two of them might have more fun on their own. Plus it has been ages since
I have been on my own on a Saturday night! I remember Saturday nights
from my wild and crazy youth ... boy do times change. Tonight is
going to be very low key in comparison! I have been
reminiscing a lot lately. Last night Mark and I were driving
through Richmond (a suburb of Vancouver where I lived from age 9 on)
and the memories were just jumping out at me. It is so bizarre how
much things can change over the years. I had no idea back then that
by the age of 29 I would have two years of severe illness under my belt.
(I think it's best that I had no idea.) I remember wondering where
I would end up in life.
I am continuing to feel stronger and more confident about going out places.
My neck still gets pretty sore, but I am convinced that my higher
hemoglobin level is enabling my body to heal more quickly.
It is so nice to have more energy for the small things in my life.
When my energy was less abundant, I didn't
take time for anything but the most essential tasks.
Now that I'm a little stronger, I don't mind taking a few minutes
to do things like putting on earrings or wearing something fun.
This morning I awoke to a gorgeous sunny day, and the view from our
living room was amazing. I looked out over the ocean water in False Creek
which was like a mirror. It reminded me of waking up in a cottage
by a lake, and looking out over the still water as a gentle mist
rises, with the sound of awakening wildlife in the background. Unfortunately
the only noise surrounding me this morning came from the construction
site we live beside. Oh well, you've got to make the most of the positive
stuff!
I went to my relaxation group at the Cancer Agency this morning. What
a wonderful idea. I felt like part of such a supportive community.
It has been tough to attend those meetings very often lately, with
so many doctor appointments and such. As my schedule lightens up with
my improving health status, I can take time for other things I care about.
This morning at the group, I was greeted with hugs, smiles, and warmth.
Lots of people told me
how glad they were to see me (and to see me looking so much better).
I am so grateful to be feeling stronger each day.
The stories that emerged as we took turns speaking around the circle
wove into a comforting tapestry ... I feel so lucky to be part of that group.
This week I have read two very excellent books, both Pulitzer Prize
winners. The first is
Larry's Party by Carol Shields and the second is
Angela's Ashes by Frank McCourt. It is odd that I would choose to
read these books in succession, as they both follow the sagas of
young boys coming to maturity. One covers the first nineteen
years of age and the other continues to middle age, but both
make for interesting reading.
I had a terrific week in the unexpected autumn sunshine. The temperature
has been breaking local records, and I cannot complain. I have been
continuing to feel stronger and happier. Today I was out shopping along
Robson Street,
and I picked up some nice new shoes and a shirt. Last week was my
first time
shopping for clothes in ages. It feels good to indulge in luxuries
for a change.
Oh yes, and a piece of good news. My hemoglobin count continues to
rise. Today it's at an all-time high of 132. The drug I inject
to stimulate my red blood cell production is definitely doing its
job very well. It's worth every precious penny. (It costs over $300
per millilitre! Yikes!)
Mark and I went for a walk around our old neighbourhood last night,
close to where we were living two years ago when I was first diagnosed.
The area, near Broadway and Granville, has become more lively since
we lived there. A big bookstore moved in and stays open until 11 every
night. In the bookstore, and even out on the street, there were
tons of people milling about, drinking cappuccino,
enjoying jazz music, laughing, reading ... It's a nice vibe.
I felt amazed to be out and about on a Friday night for a change.
Of course, Saturday night has been much more subdued with Mark and me
crashing on the couch in front of the TV. (Hey, Fantasy Island was on!)
Since the clocks get turned back an hour tonight, we will get an extra
long sleep. Ah, decadence! In the morning, if I have enough energy, I might
make a batch of blueberry muffins for the first time in months!
My friend Linda came by for a visit today, which made me feel happy.
She is a sweetheart and I love seeing her. A couple of days ago,
my friend Jeanne rode her bike over (which is amazing considering
she had pretty intense chemotherapy treatment not too long ago). We
went for a walk by the waterfront, just outside the building where I
live. It was sunny and warm, and we had a wonderful time just chatting.
Last week another friend, Laura, had a day off work. She
chose to spend her day with me! We wandered through
the shops here in Yaletown and had lots of fun catching up.
It is so refreshing to be getting more socially active. Feeling happier
and more energetic makes me crave the company of my friends, which just
makes me feel even happier and more energetic!
So many people have been commenting on the fact that I look a lot better.
I am convinced that my mood greatly affects how I come across to people.
I'm not very good at hiding what's going on. (Why should I hide anything,
anyway?) At my physiotherapy clinic, a different physiotherapist from the
one who treats me commented that I am looking healthier. She says that
when I first started attending the clinic, all the physiotherapists asked
each other what the heck I had been through. (I think I looked like I
had been through a war.) It's nice to see so many people excited about
my renewed energy. I gather that people around me have no
trouble knowing how I feel just by
looking at me. I think my formerly a ghostly
white face (due to the anemia) and my rigid movement (due to the neck
and back muscle problems) probably had something to do with my gloomy
appearance, but I think the lack of a smile and the lack of a bounce
in my step were big factors too.
Mark and I have been invited to a Halloween party next Saturday night!
I would love to dress up in a costume and hang out with friends,
so I will have to give some
deep thought to dress-up ideas. Our friends Debbe and Peter, who always put on
a fun bash, are hosting the festivities. I really hope to make it.
I was at the photo-therapy lab this morning, receiving my
ultraviolet-light skin treatment for the itchiness, when a nurse
asked me if itchiness was the only adverse effect I have experienced
from the bone marrow transplant. Looking back, I am surprised
I didn't burst out in laughter. Instead I calmly told her about
all the stuff I have experienced since the transplant in February.
As I rattled everything off, I felt a little overwhelmed. I hadn't
really stepped back and thought about how difficult my overall recovery
has been, obstacle after obstacle. While in the hospital I had
unexplained fevers, nausea, and digestive problems (which lingered for
months). Since returning home I have suffered from pneumonitis (for which I had
to be put on steroids, leading to sleep disorders and other effects),
severe headaches, debilitating muscles spasms in my back and neck,
loss of appetite,
depression, extreme anemia, heart defects (leading to a rapid heartbeat
and overwhelming fatigue), unexplained itchiness ... Happily, most of
these problems are become more manageable. I feel more energetic and
strong every day.
After my treatment at the skin clinic, I stopped by to see the
pain specialist at the cancer agency, Pippa Hawley. She happened to have a few
spare minutes, so we had a chance to chat. I was happy to let her
know that things have been getting better for me. (I was in pretty rough shape
last time I saw her.) She warned me that over the coming winter I
might experience some additional discomfort in my neck due to the
cold and damp weather. She advised me to holiday somewhere warm and
tropical; relaxing on the beach would do me a world of good.
I asked her to write that in prescription form so I can submit the
expenses to my extended health plan. (I wish!!)
I am happy to
report that things continue to improve around here. My spirits have
been up, my energy level has been up, my hemoglobin count has been
up. If only my bank account would follow that trend! (Instead my
VISA balance is up! Shop, shop, shop!)
I have been really excited to continue with the physiotherapy treatment
with the recent addition of an exercise regime. My exercise therapist
is a lot of fun, and everyone at the clinic is amazed by how well I am
doing. (A few friends are also amazed to see the word exercise in the
same paragraph as the name Lisa ... Why does everyone think I hate
exercise? Haven't you people seen the pictures on my web page of
me on rollerblades, of me climbing sand dunes, of me hiking through
jungles ... I am the queen of exercise!)
Anyway, all my fingers are crossed that my recovery continues without
any more hiccups. Mark and I are bracing for the cool, damp Vancouver
winter. I can't believe it is almost November. Any suggestions for
making it through to spring? (I have already thought about hibernating
in Hawaii, but more "thrifty" recommendations would be appreciated.)
The best suggestion will be awarded used snorkelling equipment from my
Hawaiian excursion last winter, sent to the comfort of your home (COD)
in a box filled with wet sand. Okay, there's really no prize, but
suggestions would be appreciated all the same.
Some of you have already seen this piece of artistic genius, but for
those of you who haven't ... When I was in Grade 4, I entered a school
poetry contest with the following masterpiece:
Is it inside my pocket?
I won second prize, a book of poetry! (Thank you, thank you!)
If anyone feels inspired to send me their own works of Halloween poetry
(doesn't everyone have a collection?), I would be happy to display it
on my web site. Happy Halloween, everyone!
Today has been a very exciting day! I started out by eating a
blueberry muffin, made by me! I baked some muffins a few days
ago, a definite milestone that I am doing a lot better.
(Mark will attest to the fact that I have spent very little time
in the kitchen until now.) After my delicious breakfast, I
headed to a music workshop, put on by Katherine Nicholson, the
music therapist at the
cancer agency. That workshop involved three hours of experimenting
with music, voice, and sound with other folks living with or
supporting people living with cancer. A very good time was had by
all. I am sure that if you walked into the room at any point, you
would never have realized that all the laughing people are dealing
with life-threatening illness.
Tonight Mark and I went to a very fun Halloween party! I hope to
have a picture of our costumes on my web site soon. I went as a
fairy (complete with sparkly wings, glittery eyelashes, and magic wand), and
Mark went as a vampire (a very well-dressed vampire: he wore his
tuxedo)! We had a fine time dancing, chatting, and feeling like
normal sociable people.
I just had a nice time evening of pampering myself. It started with a terrific
hour-long therapeutic massage at a clinic just a block from home.
Then I came home and lit lots of candles, put
some soothing music on the stereo, and drew myself a hot bath
(complete with essential oils). I felt so warm and cozy after it was all done.
Earlier today, Mark and I did some walking around the city. It is such
a treat to be able to go for walks again. My neck still gives me some
trouble, but it's nothing compared to a couple of months ago. My progress
with physiotherapy seems to have plateaued a bit. After a great deal of
improvement, I don't see as much change on a week to week basis any more.
I am sure my neck will be all better again at some point, but I realize
it is going to take some time. Meanwhile, I am happy to have a chance
to work on regaining muscular strength throughout my body by working
out in the gym, lifting weights, doing stretches, etc. With a bit of
perseverance, I just may reach a point where I have a buff, muscular body like
Linda Hamilton in Terminator 2 ... Okay, that's unobtainable, but it
doesn't hurt to have goals! I think my physiotherapists would laugh if
they thought I thought it might be possible for me to ever be that
muscular! I'm still a fly-weight, oh well.
I have some very good, long overdue, news to report. Liam, son to
Julia and Lauch and brother to Jack, is fine! The tumour that was
removed from this six month old child was finally (almost two months
later) reported to be
benign. There were some slight abnormalities detected which means
that Liam will have to be brought in for check-ups every six months
or so. But you can bet his parents (and everyone who knows him)
breathed a big sigh of relief when the news came out. I am so
very glad.
Today is Remembrance Day, which always makes me pause to ponder the
significant bravery of those who lost their lives in war. Tonight I had a
wonderful chance to remember others as well. At the cancer agency, a one-hour
concert
called "Music from the Heart" was arranged for tonight, and
everyone who has ever been
part of the relaxation circle was invited to attend. There was music,
singing, laughter, tears ... Departed friends were remembered, including
several people I had the pleasure of knowing quite well.
The presence of many people I care about (including Mark) made the
evening special and memorable. It is so nice to feel like part of
such a loving community.
Hi Everyone,
I am pleased to report that things continue to go well as far as my
health goes! Two weeks after stopping the drug that boosted my red blood
cell production, my hemoglobin count is holding steady at 143. That
is a good 15% higher than it ever was before I got sick 2 years ago, which
is definitely good! My cardiologist is happy that my heart is sounding
better (no more murmur sound, so the valve and muscle are likely
healing), but I will stay on beta blockers until next spring when a
heart test gets repeated. My dermatologist is happy that my
skin isn't nearly as itchy any more. (I am still taking a drug for the itch,
but I am starting to scale back on the ultraviolet light therapy.) My
oncologist is happy that she can't find any signs of cancer!!!
My hematologist is happy that my blood counts are holding steady.
My physiotherapists are happy that I am steadily increasing my
exercise endurance, and that my neck seems to be slowly improving.
And my family doc is happy that I don't constantly bug her for more
narcotics any more! (She is not so happy that she has been handed
the responsibility of re-immunizing me against most everything you
can think of. After a bone marrow transplant, the immune system
basically forgets about everything it used to have antibodies for.)
Me, I am happy that soon I won't have to visit with so many xxx-ologists!
I was really pleased to see such an enthusiastic response to my
"poetry contest"! You can check out the great poems I got back as
replies (some are pretty funny, some are serious, they are
all excellent) on my web site.
For tomorrow's meteor shower, Mark and I hope to be at one of the
best worldwide vantage points. Hawaii! We booked a spontaneous one-week
getaway now that I am feeling more solid on my feet. After the massive
rain storm here in Vancouver last night, we are pretty excited.
Hi Everyone,
We are back from Maui, and all is well. It was incredible to go
somewhere tropical and feel strong & healthy. It felt like a dream.
We had so much fun snorkelling, we ate too much food, we watched
rainbows, we wandered along gorgeous beaches, and we spent time with
our friends Jennifer & Kurt (who were also vacationing to escape
wet Vancouver). We flew back into stormy Vancouver to find there had
been severe power outages while we were away, due to winds and fallen
trees! Yikes! So if you tried to view photos on my web page and had
trouble connecting, this is the explanation. Please try again. I have
already added some new pics of our trip to Hawaii!
Yesterday Mark and I adopted an 18 month old Abysinnian cat,
to keep our 4 year old cat (and us) company. Her name is Tessa, and
we are all having fun getting used to each other.
Sending you warm and sunny thoughts,
I thought I was bringing along some light reading for our Maui getaway.
Little did I know both the books I would read dealt (each uniquely)
with life-threatening illness. The books are
The Rainmaker by John Grisham and
What Looks Like Crazy on an Ordinary Day by Pearl Cleage.
I also read some lighter books and magazines while we were there. What a
relaxing way to pass the sunny days.
I indulged a bit and had some fun drinks on our
trip. Since the transplant, I have
avoided alcohol altogether. But I decided to live it up (a little)
on Maui
and have a brewskie now and again. I also tried a local creation
called a "Lahaina Sunrise": vodka, raspberry, and orange. Yum, yum.
I think my favorite part of the trip was the snorkelling. Mark
and I snorkelled almost every day! I just love the feeling of having
my body float on the
seawater, gently rocking with the waves, with my mind immersed
in the underwater splendor! The variety of fish is amazing, and the
range of colours is quite unbelievable as well. We went snorkelling
twice at Black Rock (in Kaanapali) where tons of fish congregate to
be fed by the snorkellers. (The Sheraton Resort on that beach sells
fish food.) As soon as I submerged my face mask, even in very
shallow water, I could see hundreds of needlefish hovering at the
surface as they searched for food. They looked a bit intimidating, with
long pointy "noses". After watching them for a while, I convinced
myself they were harmless, but when Mark and I started feeding some
other fish, we noticed the pointy "noses" were actually their long
jaws which opened up like jagged scissors! Yikes! Fortunately,
the fish were not interested in biting anything they couldn't
swallow. Surprisingly, they were able to swallow objects as large
as green peas! (The frozen foods section of Hawaiian convenience
stores carries frozen peas in addition to ice cream, since it is
known that the local fish will eat this veggie from the hands of people!)
Mark and I slipped out to see a movie tonight: "La Vita e Bella" (Life
is Beautiful),
starring and directed by one of my favorite actors, Roberto Benigni.
The film has been described as "Chaplinesque", featuring physical
comedy, love, drama, and a beautifully touching story.
I have to say I loved the movie.
Tonight I went to my first choir practice. Since the summer, I have
had an urge to join a fun community choir. I searched for a month or two,
asked friends in choirs about their groups, approached
musical friends for contacts ... Finally I stumbled upon the
"New Folk Choir" for folks with little choir experience, and it's
perfect! Although I have known about this choir for a few months
now, I haven't been physically up to attending until now. (What a
milestone!) I had a little trouble keeping up tonight, since all
the songs are new to me, but I have the feeling I will catch on
quickly. The group seems friendly and accepting. I am so excited!
Mark's birthday was yesterday and we had a really nice time. We slept in
late, grabbed a quick breakfast at home, then rushed out so Mark could have
a massage and I could have a manicure and pedicure. Luxury!
We met back at home, then went out for brunch at a cozy neighborhood
restaurant called Tomato.
We spent the afternoon wandering around Gastown, a part of Vancouver
that has lots of antique shops. Mark was hunting for a nice crystal and
silver ink-well, but we didn't have any luck. (We did have fun though.)
On a walk along the shore in our neighborhood, we noticed the tide coming
in. There is a sculpture that has flat concrete blocks which you can
hop along during low tide. During high tide, the sea-water slowly pools
over the blocks, fully submerging them under water. It was quite
a moment when we witnessed the last of the
concrete blocks gradually become submerged.
Later in the afternoon, my mom and brother came by for a visit
(with some nice gifts for Mark, including gift certificates for
Starbucks coffees!). A bit later, Mark's friend David came over and
we all went out for all-you-can-eat-sushi, Mark's choice! We were the
last folks out of the restaurant, after which David came back to our
place for a night-cap. All in all, a very fun day.
Well, no news is good news when it comes to frequency of my entries
on this web site. The fact that I have only been updating occasionally is
definitely an indication that I am off being busy and doing fun things
(and some not-so fun things too, of course).
I remember someone sending me email a while back, someone who had
stumbled upon my web site on the internet. They commented that after
reading through my arduous ordeal, they
were hoping to find a "happily-ever-after" entry at the end of it all,
but instead they found I was still in the midst of medical upheaval.
Well, I think this is the first point at which I can confidently
say the worst is behind me. I don't feel "cancer-ish" for the first
time in more than two years, I don't have very frequent chest pains, and
most of the nasty complications that hit me over the summer and fall
are starting to resolve themselves. Finally! There certainly were
times over the past several months when I felt like giving up. During
the transplant I never had that urge to give up; only a desperate longing for
things to get better.
And they have gotten better (after getting worse!) and so I feel very
grateful and lucky.
Tonight is Friday, and Mark and I have no concrete plans for the
entire weekend. We are just going to kick back and do whatever inspires us.
We just had a fun afternoon and evening, watching a late matinee then
having dinner. We saw "The Red Violin" with our friends Lis and Anthony,
and we all loved it. (In fact it was Lis and Anthony's second time
seeing it!) What a rich, touching, wonderful tapestry of a movie. If you get a
chance to see it, I would highly recommend it. Don McKellar was involved
in the making of the movie, plus he plays a neat part. (He has been involved
in other movies I have loved like "Roadkill", "Highway 61", "Last Night",
and "Thirty-Two Short Films About Glenn Gould". He is also involved in
the hilarious Canadian TV show "Twitch City".) Colm Feore
played a terrific role in the movie as well. Mark and I have watched his
career take off since the days when we used to see him acting in plays
at the Stratford Festival in Ontario. Very talented guy.
After the movie, the four of us walked across the street to a
great vegetarian Indian restaurant called "Annapurna" to meet
our friend Linda for a meal. Yum. We always love the food there.
In fact, Mark and I used to be such regular customers that the
staff knows our order off by heart (even the quirky little off-menu
requests we favor). It's great fun.
Earlier today I got some bad news about a dear friend, Jackie, whom I know
from Callanish retreats and from the relaxation group at the cancer agency.
She is suddenly back in the hospital (she has been living with cancer
for over ten years, and recently found herself in remission).
Within ten minutes of finding out she was in hospital, I was by her
side, holding her hand. She is such a sweet, inspiring woman. I believe
she is close to eighty, and in spite of the fact that she is
mostly blind, she has knit hundreds of pairs of slippers for
cancer relaxation groups.
(In fact, just after I was diagnosed with lymphoma,
I was at the cancer agency for an early morning bone marrow biopsy. I was
scared as hell. Lis -- the woman who came to the movie this
afternoon -- was a counsellor at the cancer agency at that time, and
I met her for the first time that morning. She came to my biopsy
to help me get through the experience, using voice, imagery,
anything to keep my mind preoccupied. When a nurse told Lis I had
"cold feet" (I was actually frightened, my limbs weren't really chilly),
Lis produced a pair of Jackie's hand-knit slippers to warm my feet and
my soul!!!
Jackie has touched hundreds of people similarly.
As a person, she is full of humour and insight. To see her in the
hospital this afternoon was to see a shell of the Jackie I know and
love. She was worn down and depressed by the state of health care in
this province ...
Apparently the level of care she is getting in the hospital is
quite inadequate. She feels the nurses are angry, her requests for
the bedpan get met with scorn, she doesn't get any help keeping her body
clean, and she hates the food. Hearing these complaints from as
kind and serene a person as Jackie carries a lot of weight. It pains
me to think she is so vulnerable and unhappy.
Today was a busy day of rushing around, but by evening I had a
couple of events to attend that I really enjoyed. The first was
the annual relaxation group Christmas party at the cancer agency.
I saw lots of familiar faces, got lots of hugs, sang some
songs, and had a terrific time. Next I went to choir practice
which is always a blast, I'm learning! I am so glad I joined
that group. We are having our first concert on Janaury 31! That's soon!
Today I received a Christmas card from my cousin Laura in England.
We used to be pen pals as kids, so I feel like we really shared
our childhood. As adults, we haven't been as good at keeping in
touch. I feel a special connection to my British cousins through my Dad,
because whenever they visited he treated them with the love and pride he
would express if they were his own kids. It was really special to see.
Anyway, hearing from Laura brought back old memories, both of times
when we were kids, and of times when she was living with a boyfriend
here in Vancouver (which gave Dad a good chance to watch over her
and be a good uncle!). Laura said she checks in to see what's happening
on my web site every week or so. But since she doesn't have access to
email, she never told me she was "lurking". It is so heart-warming to
know she is out there keeping tabs on my progress.
Speaking of progress, my neck is still at a plateau in terms of
improvement, but I am so impressed with how far I have come that
I really shouldn't complain! My
side-turning is somewhat blocked in both directions, and my neck is
all-round stiff, but at least the pain has subsided tremendously.
And my mobility is a gazillion times better than it was in the
summer and fall.
Most everything else seems to be going well. My chest is sore once
in a while, but not enough to set off alarm bells. I haven't
found any inflamed lymph nodes (which would be really bad to find),
so that's a huge relief. My hemoglobin counts have been slowly
dropping ever since I stopped injecting the drug that stimulated
production, but the numbers are still in the normal range, and I
hope they will stay there. My itchiness has almost completely
disappeared (knock on wood) -- what a huge relief!!
So all-round, life is good!
Well, payback for my rushing around and depriving myself of sleep
last week, is suffering from a brutal cold this week! It's so bad
that I had to skip physio today (and I wimped out on doing exercises
at physio on Friday). I'm sniffling
and sneezing, but this gives me a good excuse to stay inside
where it's warm. It snowed last night! Today the skies are clear,
so it's gorgeous to look outside (from inside where I'm cozy).
The woman Jackie I wrote about last week has been released from
the hospital today, on a trial basis. She will have 24-hour-a-day
homecare support, and lots of friends will be keeping tabs on her.
If things don't work out for her at home, she has a welcoming spot
reserved in the Palliative Care Unit of St. Paul's Hospital, a
wonderfully nuturing place. I know she is resistant to the idea
of going into Palliative Care, but she would be very well cared for
there, and she would be under absolutely no obligation to die!
Mark's sister Patricia, her husband Peter, and their son Noah arrive
from Calgary today. They are staying with Peter's parents in North
Vancouver, but we will be seeing lots of them. On Christmas Eve,
the three of them will be joining Mark, me, my mom, and my brother
at my mom's place for dinner. It's terrific when we can all get
together in a big group.
Tonight, just as Mark and I were about to sit down to have dinner (which
Mark graciously prepared), I heard the sound of drumming. It was coming
from the Roundhouse Community Centre
which is 18 floors below our apartment, across a courtyard.
I went to the window to take a look.
The sight was mesmerizing. There were a couple of hundred people
surrounding the courtyard roundabout which was used to turn trains decades
before
the Roundhouse was ever a community centre. The people were carrying
handmade lanterns, lit by candles within. There was drumming, singing,
and a few people were in the pit of the roundabout, lighting fire in
the pattern of a a giant star. I knew instantly that this was a celebration
of Winter Solstice, the shortest day of the year. I felt privileged to
be witnessing such an event.
We postponed dinner by a few minutes as we watched the star gradually
take its fiery shape. The crowd cheered, the drum bellowed, and my
skin shivered. I brought both the cats in to take a look! (I know, call
me weird.) Tessa wasn't
too interested, but Macska's eyes lit up the moment she saw the sight
below. I could feel her heart race as she watched the people, the smoke, and
the whole scene.
Although I wasn't taking part in the celebration directly, it was
heart-warming to be a witness. I felt the significance of the changing
seasons, and I felt alive!
I had a pretty minor scare last week, suspecting I found some
troublesome lymph nodes and feeling some pain in my chest. I dropped
in on my oncologist (she's very patient and very accommodating!) and she
checked me over, reassuring me that I'm probably just experiencing some
anniversary jitters. For the past two Christmases I have been in crisis,
so it's kind of natural to expect to be sick this Christmas too.
But I'm NOT sick (except for this very normal cold I've got), which
is TERRIFIC!!
The impending new year gives me pause to reflect on this past year.
It has definitely been a rough one, but there have been some huge
patches of sunshine! TWO great trips to Maui; countless phone calls,
letters, visits, emails, and other unique gestures; lots of prayers and
good wishes; and an incredible Medicine Quilt special delivered right
to my door -- if you still haven't seen the pictures, you really must!
I feel very blessed. I extend a very sincere Thank You to all of you
who take the time to read my updates and who let me know in different
ways how much you care. You are all very important parts of my life.
You motivate me to keep trying to live in the moment, to continue
fighting for things I care about, to maintain hope and a strong spirit.
Many of you have sent us gorgeous pictures of your kids. You can find
most of them in the photo album here on my web site.
Please, keep the pictures coming and we'll post 'em! (Folks without
kids can send us pictures too!)
My web site now contains dates for the
bone marrow donor
information sessions in Vancouver.
If you go to a session, there is no obligation to register. And you
know what? These days, being a donor is way easier than you probably
think. It's really not very different from donating blood, so you might
want to look into it. I have friends who owe their lives to the
generosity of strangers who donated marrow. Let me thank those of you
who have already registered as potential donors. It's a gift beyond
measure.
Some of you know I recently joined a choir (!!) which has been
tremendously fun. We will be having a concert January 31 at 7pm at the
UBC Medical Student & Alumni Building at 12th and Heather. Tickets are $7,
kids under 10 are free. Let me know if anyone is interested in attending.
Sending love to you and your families, and many good wishes for the new year,
Lisa.
PS - I promised a friend I would ask if anyone on this list who lives in
BC is heading to Scotland for a vacation in the new year. If you are,
could you drop me a line please?
Christmas Eve brought a tremendous surprise to everyone living in
Vancouver: snow! Mark's sister and her family visiting from Calgary
were pretty disappointed to find the weather here worse than they left
behind. Traffic was pretty messed up here in the city for Christmas,
but in the end I think most people managed to find their way to their
destinations.
We spent Christmas Eve at my mom's place (we've celebrated on Christmas
Eve, in the European tradition, ever since I was a kid). Mom's boyfriend
Les, my brother Trevor, Mark's sister Patricia, her husband Peter, and
their son Noah were all there. It was a lot of fun! Having a toddler there
made all the difference, I think. Noah was so excited about each and
every present, even the ones that weren't for him! He had so much fun
opening all the gifts. It was adorable. My mom really put a lot of work
into making Christmas special, and it paid off.
Mark and I felt like we really
got a chance to know our nephew on this trip. We look forward to spending
lots more time with him and his folks in the new year. (We are long
overdue for a visit to Calgary, to visit them and a couple of other sets
of friends!)
After the Christmas Eve celebrations, Mark and I drove my brother
out to North Delta to be with his best friend's family. We came in
for some refreshments and to meet the whole family -- including Lacey
the cocker spaniel and her newest adopted sister Brittany (also a
cocker spankiel, who was my brother's Christmas present to the family)!
Brittany, unfortunately, went into heat within hours of being introduced
to her new home! That will add an interesting spin to Christmas, I'm sure!
Unfortunately with all the celebrations, I have come down with an even
more brutal cold than I had before Christmas. Ugh. Oh well, plenty of
bed rest and fluids for me. It's a good excuse to stay inside, safely
away from the cold.
My birthday, the 26th, was a lot of fun! We had given theatre tickets
to a bunch of friends and family to attend "It's Snowin' on Saltspring"
at the Arts Club Theatre, and I think everyone had a good time!
I was still pretty sickly (I brought my own box of kleenex into the show),
but I managed!
So now I'm 30! I'm actually pretty impressed that I have come this far!
I know some people get depressed when they hit their thirties, but for
me it feels like an accomplishment. After being diagnosed with cancer at the
age of 27, finding out it came back with a vengeance at the age of 28, and
spending most of 29 not knowing if I'd survive the bone marrow transplant,
30 feels excellent!
I spent most of today at the Cancer Clinic with a close family friend
who was recently diagnosed with breast cancer. This was her first visit
to the clinic, a time when information overload can be a factor, so
I came along as an advocate and a scribe. While we were there, we
bumped into some of my old nurses and my previous oncologist, Barb Melosky!!
Dr. Melosky joked that I'm the patient that turned her into an alcoholic
and that ended up making her have to dye the grey out of her hair ...
I still remember the day when I told Dr. Melosky I was quitting chemo.
She said she had to go home that night to have a scotch. I ended up
returning to the chemo regime a few weeks later, after some pain and fear,
but I don't regret exercising my right to choose my own treatment.
I think Dr. Melosky learned something about me and patients in general
that day back in '97 ... She certainly manages to laugh about it today.
She's a sweetheart. (And I would never even have noticed she dyes her
hair now if she hadn't told me!)
Copyright 1998, All Rights Reserved.
Wednesday October 7, 1998:
Thursday October 8, 1998:
Monday October 12, 1998:
Friday October 16, 1998:
Saturday October 17, 1998:
Monday October 19, 1998:
Friday October 23, 1998:
Saturday October 24, 1998:
Tuesday October 27, 1998:
Email sent out Tuesday October 30, 1998:
Email sent out Friday October 30, 1998:
Witches and goblins,
Pumpkins galore,
Where is that candy
I put on the floor?
Or inside my shoe?
But worst of all,
Is it inside you?
Saturday October 31, 1998:
Saturday November 7, 1998:
Wednesday November 11, 1998:
Email sent out Monday November 16, 1998:
Email sent out Saturday November 28, 1998:
Lisa.
November 30, 1998:
November 30, 1998 (Later):
December 7, 1998:
December 11, 1998:
December 13, 1998:
December 15, 1998:
December 21, 1998:
December 21, 1998 (Later):
Email sent out Thursday December 24, 1998:
Friday December 25, 1998
Wednesday December 30, 1998