Monday April 6, 1998:

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!


Tuesday April 7, 1998:

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!


Thursday April 16, 1998:

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 bronchoscope, so I should know more soon. Stay tuned for more info!


Friday April 17, 1998:

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. On Monday I will be having a bronchoscopy and lung biopsy which will hopefully provide a definitive diagnosis, and which will allow me to pare down my daily intake of medications.

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.


Monday April 20, 1998:

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.


Tuesday April 21, 1998:

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.


Wednesday April 22, 1998:

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.


Friday April 24, 1998:

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.


Monday April 27, 1998:

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!

Friday May 1, 1998:

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.


Saturday May 2, 1998:

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.


Monday May 4, 1998:

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!)


Monday May 4 (later):

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.


Tuesday May 5, 1998:

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 ...


Wednesday May 6, 1998:

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!


Thursday May 7, 1998:

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.


Monday May 11, 1998:

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.


Wednesday May 13, 1998:

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:

beautiful little cherry blossoms

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!


Friday May 15, 1998:

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.


Saturday May 16, 1998:

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!


Sunday May 17, 1998:

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.


Monday May 18, 1998:

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.


Thursday May 21, 1998:

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.


Friday May 22, 1998:

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!


Monday May 25, 1998:

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.


Tuesday May 26, 1998:

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!


Wednesday May 27, 1998:

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.


Thursday May 28, 1998:

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.

Monday June 1, 1998:

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!

Monday June 8, 1998:

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!

Thursday June 11, 1998:

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!

Saturday June 13, 1998:

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.

Monday June 22, 1998:

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.

Friday June 26, 1998:

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!)

Saturday June 27, 1998:

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.

Friday July 3, 1998:

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 ...

Monday July 6, 1998:

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!

Tuesday July 7, 1998:

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.

Thursday July 9, 1998:

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.

Tuesday July 14, 1998:

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.

Thursday July 16, 1998:

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!

Thursday July 16 (later):

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.

Monday July 20, 1998:

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!

Tuesday July 21, 1998:

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!

Wednesday July 22, 1998:

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.

Thursday July 23, 1998:

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.

Wednesday July 29, 1998:

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.

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