Hair today, gone tomorrow...

It seems that my hunch was right, and that sore scalp was indeed a hint that my hair was about to fall out. It has not been dramatic, but more like a cat in Spring - heavy shedding. My appointment with the "Look Good, Feel Better" program has been moved to this Thursday, and the timing couldn't be better.

Yesterday my three men went with me for blood work at Princess Margaret, and then to see Dr. M. She was unhappy that I have been taking sleeping pills (afraid that I will develop a dependency), and wants me to try other methods of getting to sleep (appointment to see a psycho social practitioner). I did not take my pill last night, but tried melatonin instead - resulting in a sleepless night. I think that I dozed off for about two hours around daybreak, but am a bit wasted this morning. I'll hope for the best tonight because I know that sleeping is going to be an issue for the first few days of this next treatment (while I am taking the steroids). Dr. M. has pronounced me fit to resume chemo on Wednesday, so I'll be taking the roller coaster again, and hope that the chemicals do their job. She is reducing the paclitaxel by 20% because I am still experiencing tingling in my feet and legs from last chemo, and that is not good because of the danger of permanent nerve damage. She pronounced herself pleased with my body's response to this first chemo (fluid retention slowdown) and is "quietly optimistic". For right now, that is good enough for me.

Eric is going to cut my hair later today with his electric clippers that he brought with him from Lisbon. Yesterday's attempt failed because North American current was too weak to make them work effectively. Eric said that he could see the blades opening and closing, and I could imagine them pulling my hair out instead of cutting it. We found a transformer last night, so should be good to go this afternoon. I'll be putting to good use the hats and scarves that good friends have given me, and by Thursday, with my new makeup skills, should be able to make myself presentable.

My body lies over the ocean

It seems that my white blood cells are holding their own. My little scare with a fever responded after several hours of hot baths, salt water gargles and obsessive temperature checks. I woke up yesterday with all symptoms gone, and decided to put the thermometers away until I feel ill again.

My scalp is becoming more and more sensitive; it feels sore when I lift a hank of hair or disturb the roots. I am being very gentle when I shampoo or brush, and wonder if this is when I will begin to lose my hair, though I have read that is normally at the end of the second round of chemo. My skin is very dry, and I take quick showers and then soak in a tub of hot water and baby oil.

My mouth and tongue are a bit sore, so I am careful when I brush, and I rinse with baking soda and warm water - luckily I seem to still be able to eat lightly spiced foods. Last night we drove to Little India for my birthday dinner. I love going to all-you-can-eat buffets with my men-folk because they make me feel like we are really getting our money's worth. Through all of this my appetite has remained good, and I am looking forward to pot roast and sweet potatoes that Eric is cooking tonight.

Some of the perks of my cancer: people send me flowers, cards and chocolates, others bring me food and other kindnesses, I no longer do the vacuuming or clean bathrooms, I am waited on hand and foot and am being spoiled rotten - and I like it!!!

Get a little, give a little

Eric arrived last night in the middle of a game of Quiddler; his plane was only half an hour late. We are sooooo happy to have him near again.

I had a bit of a scare this afternoon, suddenly feeling a deep sore throat and jabbing pain in my right side. My temperature was up a degree for a couple of hours, but it didn't reach 38 C., the point where I am supposed to go to Emergency for antibiotics, so I hope that this was a false alarm and not the beginning of an infection. I am trying to be so careful, but there are germs everywhere, and I am feeling vulnerable again.

On a brighter note, the sun is shining and it feels good to be outside. I am just making brief sorties onto the deck, and not risking a full walk till I know what is going on with my body. I have received Flat Anne, a cardboard cutout doll, from the daughter of a friend in Minnesota. I will be taking Flat Anne around Toronto, photographing her at iconic Toronto sites for a school project, and hope that I can get most of this done this week, while the sun is shining and I am feeling good. i already have a photo of her in front of the house her parents lived in while they were in Toronto, eighteen or so years ago.

Hurrah for last night's vote!!

God bless the Democratic Party! Republicans - just get over yourselves.

Water, water everywhere - NOT!

Week 3 of Chemo 1 begins tomorrow, and I am feeling better and better, though still a little weak, probably because I am so out of shape now. If this is the pattern, then it will be: Week 1 - feel terrible, Week 2 - feel weird, Week 3 - feel good. Let's hope that it stays like that - I can take terrible for a week, if I know that good is on its way.

I had what I hope is positive news today. When I went in for a thoracentisis this morning, Doctor D. gave me a thorough ultra sound and didn't find enough liquid in any of the 3 cavities to warrant removal. He said that there had been no accumulation in the left side and belly, and that there was a negligible amount in the right side. I left feeling a bit bad that I might have taken an appointment that someone else needed, but elated that centesis may be a thing of the past for me. I have reserved another two appointments in case I need them - one Thursday, and another Tuesday - but can cancel on the day if I am feeling fine. I am hopeful that this is an indication that the chemo is already working and that the production of fluid has been slowed down or halted.

Eric flies in tonight and tomorrow the sun is supposed to return, so I am looking forward to an excellent week!

A little help from my friends

Thursday I had another paracentesis at North York Hospital, where they drew a liter of fluid from my abdomen. Instant relief, and for the first time since chemo I was able to feel my stomach muscles. Took advantage of the excellent weather for walks at the beach, short shopping expeditions and just sitting on the front porch with Ranger at my feet. Sylvia arrived by train that evening and has been wonderful company for both JP and myself. I feel guilty having her here, as her daughter is having surgery on Tuesday in Montreal, and I feel that she should be with her. She has made a deal with Miriam, it seems, who will be standing in at Jenn's bedside for her till she returns on Wednesday. I guess when you feel like one big family, individual members can be interchangeable.

Unfortunately, each day I feel better and better, just as I should be keeping away from people, and I take this as a sign that I will be strong again for chemo 2 in another ten days or so. Now I am beginning day 11 of chemo 1 - in the trough of the low white blood count period. I must be extra vigilant of germs, nicking myself, keeping my hands away from my face, washing hands, washing hands, washing hands. I am still sleeping with the help of my little pills, but find that discomfort at night keeps them from acting quickly. I can feel the pressure rebuilding in the right side of my chest, and wonder if I can wait till next Thursday for my scheduled appointment. I'll probably have to phone on Monday to see if I can have an earlier slot for thoracentesis.

I must be the wealthiest person I know in friends. I'm having to book visits now, so that I guard my strength. Mornings seem to be my best time, afternoons I try to keep for walking when the weather permits (our sunshine disappeared overnight and didn't return this morning), but evenings I can be quite exhausted. May came over with videos and gave me a beautiful manicure. How pampered can one woman be??

Things that I am thankful for today: friends, sleeping pills, Skype, the North York Hospital team who look after me, my new manicure!!

Ramblings

Last night (Wednesday night) was disappointing as I gave up on falling asleep after about 40 minutes and ended up taking yet another sleeping pill. I did sleep deeply, and woke up after 6 hours, then went back to sleep for another 3. This morning I feel great! A burst of energy to finish preparing the guest room for friend Sylvia, who is coming to stay for a few days, till Eric arrives on Tuesday. She is a vegetarian, and I have become this raging carnivore, whom I sometimes have trouble recognizing - we may have some very interesting mealtimes...

Feeling groovy

Seven hours of pill-induced sleep, followed by another two hours of the real stuff, and I woke up refreshed and pain free this morning. I still have pressure building up on my right side, but all things considered, this is about as good as it is going to get for the next few months, and I am not complaining. I ate a whole sandwich at lunch, plus half an avocado with homemade salsa (yes, Miriam, Dad has successfully replicated your recipe!), but spent the next little while walking off the unexpected mass in my stomach. The weather was gorgeous, and we took advantage of the 17 degrees C. to walk to the beach and back. Tiring, but very satisfying. Afraid of taking a chill, I overdressed, giving my new blue hat its first outing, but there was no wind and I got so hot that I ended up carrying my coat back over my arm. The hat feels good, and next week it will be cold again, so it will probably be put to heavy use.

Our kitten Ranger is getting so big now that he no longer fits into his favorite place, the bathroom sink, and so he has test run the kitchen sink as a poor second choice. If he continues to grow, we may have to give him the upstairs bathtub!!

The restorative power of friendship

If good wishes killed cancer cells I would be already out of the woods by now. I have been overwhelmed by emails, Facebook messages, notes on my blog, phone calls, flower deliveries, visits - the good vibes are out there humming through the air, and I pull real energy from them, and thank you all for giving me strength through your love and attention. Wonderful people have been dropping by with food treats, made with so much tender care and loving attention. I am receiving good luck talismans and hats in the post, and wonderfully cheerful cards, and even an inspirational short story. Photos are being posted on my Facebook Wall. My family is weighing in in a big way - JP taking the brunt of the day-to-day grind of making me comfortable - Miriam has been the best nurse possible, organizing the house to make it more cancer friendly, arranging appointments, vetting phone calls, leaving lists so that JP doesn't have to make too many decisions about mealtimes - she will be returning for a week during each of my future chemo sessions. Eric is subletting his apartment in Lisbon, and will be here in a week's time to pick up the relay, and in the meantime, a good friend from Montreal is coming to stay till he arrives. My younger brother is coming for a ten-day visit, and all this activity is going to be very helpful in keeping me distracted from myself.

Friendship is restorative, but has to play second fiddle to sleep. Last night I took a wonderful little green pill that allowed me seven hours of uninterrupted zzzzzzzzzzzs. After more than three weeks of sleep deprivation, it was - HEAVEN!! I am planning on repeating that experience tonight - too good!! And a short aside concerning my liver pig-out from yesterday. I think that I got all the goody out of that purchase, as I now have a hard time even imagining how that could have sounded an attractive idea to me. I did enjoy it as it went down, but that satisfied me on some deep level that just doesn't need to be plumbed again. Ranger, our cat, is going to have to give us a hand with the left-overs, cause JP was no help at all. His serving yesterday went into his mouth and right back out into Ranger's bowl.

So today, I have felt fairly good - we took a short walk that tired me, and didn't get us all the way to the lake, but at least we took some advantage of the beautiful day. In spite of being a bit wobbly, I haven't needed any pain killers, and was able to spend some time on the computer. One day at a time.

You can't keep a good woman down

This morning I got up (didn't wake up because I didn't sleep) feeling a bit desperate and beaten up after three pretty bleak days. We called my doctors for some advice and new medication, then headed out to the hospital for another thoracentesis (600 ccs from the left side this time), and headed home feeling noticeably better, the aches and pains subsiding as we drove. It makes me wonder if it is all the chemo, or if the pressures from the fluid build-up is playing a larger part in my discomfort.

We made a lightning visit to the local grocery store to stock up on quick protein (I am having more cravings than a roomful of pregnant women), arriving home with barbequed chicken wings, a pound of chicken liver and two packs of sliced turkey breast. I am now full to the gills with liver and broccoli, comfortable for the first time in three days, and looking forward to taking my sleeping pills tonight for a long, dreamless night of healing sleep.

The honeymoon is over

After three days of wondering what the big deal was with chemotherapy, my 4 tablets of dexamethasone were finished, and, as reality settled in, I discovered that I was just as big a baby as the next person. I was sleep deprived, constipated and suddenly felt like a truck had just run over me two or three times. JP was sent out on expedition to find a big bottle of extra-strength Tylenol and Miriam massaged my feet, fielded phone calls for me, and I finally fell asleep for about an hour - in the middle of the afternoon! I still do not know if this great battle of my insides has been going on in my body since chemo started and was just masked by the steroids, or if it has suddenly kick started, but the effect has been startling. My swollen belly has started to deflate, and I have lost about 5 pounds since yesterday (most likely in excess fluid), and hope that this means that the cancer is being attacked. Last night I slept for six-hours in our bed - my first night not spent in the Lazy Boy in three weeks!

I just found out that my brother Rick is flying up from Alabama for ten days, in ten days'time, and that Eric will be arriving from Lisbon the day before Rick arrives. It will be such fun having them both here at the same time! Something good to look forward to.

Things I am thankful for today - family, friends, flowers, Skype, Canada, Tylenol...

God bless the Canadian medical system

With all the uproar over Obama's proposed medical bill in the US, and the fear-mongering that is being spread by the Republican party, using horrors stories from Canada as examples, I thought that I should weigh in on the debate and just say, "ARE YOU GUYS CRAZY???? Since the end of January, I have seen my own GP 3 times, she has called me 4 or 5 times at home to check in on me and make sure that I am alright, I have had 2 chest xrays, 1 ultra sound, 1 CT scan, 4 thoracenteses, 1 paracentesis, 2 rounds of blood work, 1 session of chemotherapy, seen my oncologist twice, and two other cancer specialists. How much did I pay for all this? NOTHING!! And all of the interventions have been done in a most timely manner, professionally, and by first class, caring professionals. I am being treated in a premiere Canadian cancer hospital, with free workshops and social services available to me on the spot should I feel the need for additional support while I am in the building. I shudder to think how different things might have been if I lived in the US without medical insurance. Support Obabama's bill for the right to affordable treatment for all Americans!

I love my chemotherapy

Wednesday, March 10th, I am finally ready to begin my chemotherapy treatment. We arrive at Princess Margaret Hospital at 8:30, I sign in and am installed in a hospital bed at the end of one of the long corridors, separated from a row of beds by curtains that can be drawn for privacy. Luckily, there is a back door to the waiting room near my bed, and we are at the end of the line, so Miriam and JP are tolerated to stay with me in spite of a one-visitor at a time regulation.

As a first-timer, I spent 8 hours there, hooked up to a drip that alternated between saline solution to flush the system and actual medication. Besides cortisone, benadryl and anti-nausea drips, the actual medications that I was given were paclitaxel and carboplatin.

We won't know for several weeks whether treatment is working, but at least the 8 hours were a painless, almost fun event. JP, Miriam and I played cards, met with a nutritionist, chatted, and while I slept after a benadryl drip, the other two explored the hospital and brought me goodies to eat. I had absolutely no reaction to anything except the benadryl, which made me high as a kite and then knocked me out for a half hour or so.

Miriam has booked me in for a "Look Good, Feel Better" workshop next week where I will learn how to paint on eyebrows and otherwise use makeup to help disguise the ravages of chemo - I can't wait to learn some tricks of the trade that totally flew over my head when I was a teenager. She also got me on a waitlist for a "Head Wrap" workshop that will show me how to cover my balding head in glamorous ways. On my own I have perfected three looks: Mother Theresa, Aunt Jemima and babushka. I need help!

background information to catch you all up

It all began in mid January when I noticed a funny crinkling sound in my lungs when I lay down on my right side or my back. This didn't get better, and in fact became so pronounced that it was keeping me awake, so I made an appointment to see my doctor. She knew that I was not a whiner and ordered a chest xray, which showed clear lungs, but a pocket of liquid under the right lobe of my lung. She sent me for an ultrasound that showed liquid in the abdomen as well, and I began to be aware of feeling bloated to the point of not being able to sleep. Next she ordered a CT scan and a thoracentesis (thoracic puncture) and paracentesis (abdominal puncture). The CT scan showed a scattering of suspicious looking cells on "critical organs," and the fluid that was drawn off (2 litres from the right side of my chest and 800 ccs from the abdomen) was analyzed and showed the presence of adenocarcinoma cells that are generally indicative of gynecological or peritoneal cancers. I heard this last Wednesday (Feb 24, 2010). Our daughter Miriam arrived on Friday evening from Montreal to stay for two weeks and has been wonderful at keeping a cool head and distracting us from morbid thoughts.

After a couple of days of thinking that I would have to wait for two weeks to even get an appointment with an oncologist (my GP was hitting a brick wall), Miriam and JP wrote to a few of our friends/ex students/ old neighbours who were doctors, and we got immediate response (like one minute after sending the email) from doctor friends in a Minneapolis teaching hospital, who contacted the doctor that we were trying to see at Princess Margaret Hospital - this was on Saturday. On Monday morning I got a call to say that I had an appointment for Tuesday (March 2). I had some blood work done, and will be going back in on Monday to discuss the results from tests that they are doing to decide if we can go ahead with my first chemo session on Wednesday (March 10). The rhythm will be chemo every three weeks for three sessions with blood tests and analysis between every session. There should be positive results by the end of the second session (as well as hair loss).

I am feeling positive for short term results, but have been told that the cancer will most likely return in a matter of years, so the long term prognosis is not fantastic. Still, I will take whatever I am given, and hope that I will be one of the unexplained miracles of modern science.

I am a bit sore from having to sleep in the lazy boy chair because the fluid buildup means that I cannot lie down to sleep because of pressure on my lungs. Hopefully that will disappear with the first chemo, and that will mean that the cancer is being attacked.