Christmas post

Hi all,

Eric here. Anne has asked me to update the blog as she hasn't been feeling up to it lately. Feel free to comment, however, as she does use her computer regularly and enjoys hearing from you.

Her days are up and down now, and it's difficult to predict how she'll feel from one hour to the next. Happily, she has plenty of good moments, but there are hard times too. It's important to have a lot of family time these days and Christmas has provided the occasion. Miriam has been here for a week now, helping take care of Anne in a big way and being that much needed breath of fresh air. They've spent some time making beautiful Christmas decorations out of paper, and Miriam has helped make aspects of Anne's care much more efficient. Rick is here now too, also helping to round out the picture and raise our spirits with his profound kindness and sense of humour. Viva has most recently arrived and made a warm situation even better.

There's not much more to say except that Anne is receiving excellent care at home now, with daily visits from the nurse and weekly from the doctor. We wish our friends and loved ones everywhere a merry holiday season, and encourage the use of this time to connect with the important people in life. All the best!

Christmas in our sights

These days my low energy makes me spend much of my time in or near my bed, except for trips to the North York General Hospital where I get drained, and the odd other hospital visit. However, I have a doctor who visits me at home once every 2 weeks, or more often if necessary.

For the past couple of weeks, I have been concentrating on getting stronger - after a drain I have two to three days when my appetite is good, my capacity is at a maximum, and I eat all the full fat food that I can get my hands on. By day four though, the liquid has built up again and I can only eat in bites here and there. Starting the week after next, I will be going in for 2 drainings per week, hoping to be more comfortable.

JP bought me a wheelchair last week so that now I can contemplate leaving the house. I had hoped to go to one of his Christmas choir concerts, but nearer the time I realized that I was too tired to be in one place for a couple of hours at a go. I have been out in the chair for a brief shopping, so it does help.

Miriam was home for a couple of days this week, and she and JP's sister (also here for a visit) shopped for a Christmas tree for the living room. We spent an evening making decorations, as all of ours were taken to Alabama years ago. Miriam's new rule is that we use only items that are already in the house - no purchases other than several strings of lights. We have made lots of white paper snowflakes, foil icicles, and cutouts from cards and boxes. The prettiest result was from some old dried and faded Chinese Lantern flowers that she has slipped over yellow and orange lights - they mute and spread the color, and the light that shines through, highlighting the delicate veins, is just beautiful.

Next week, Miriam is back, then Rick, then Viva, all staying over Christmas and New Year’s. We are all looking forward to it!

Sorry for being away

Two weeks is too long for me to leave my blog in limbo - I am beginning to get worried messages from friends all over the globe, so am shaking myself into action to put your minds at rest and let you know what I have been up to lately.

We had a wonderful week of family get-together that came about by accident, with my older brother from England and his wife, two of his children and his daughter's boyfriend, my younger brother from Alabama, Miriam and her partner and partner's mother, and Eric. Normally three house guests at a time were all that we felt we could handle, but this was the little week that grew and grew, and it turned out to be one of the most satisfying weeks of the year - the first time in so many years that my two brothers and I were together at the same time. At our most crowded we were 12, but everyone pitched in with cooking and cleaning, and we celebrated American Thanksgiving two weeks early with turkey, dressing and all the fixings! I don't know if it was the good fellowship, but I felt very comfortable all week, and it was with some sadness that we said goodbye to all our visitors. Now the house is back to normal, and I am back to my normal up and down days.

My medication has been changed to a long-lasting narcotic painkiller that I only have to take twice daily, so am able to live now without one eye on the clock. I have completed two rounds of my new chemo Caelyx, and we are hoping that it will prove successful in fighting some of my symptoms, such as ascites. Time will tell, but in the meantime I am having weekly taps to belly and thorax that typically take out from 2-3 liters of liquid, and make me feel much easier. I've had my nephrostomy tubes replaced once, and today had a doppler ultra sound test on my left leg to check for possible deep blood clots.

Friends continue to shower me with cards, flowers, good wishes and sweet surprises, so I am feeling very blessed. Autumn is here for sure, and most leaves have fallen from the trees. Winter is around the corner, and it is looking more and more as if we will be spending Christmas here in Toronto - I just don't feel secure enough to absent myself from Toronto for long periods, and a long drive or airline flight is not realistic for me at this time.

Back to NYGH

This past week went by slowly. I was very uncomfortable with a build up of fluid in my chest and abdomen that my oncologist didn't seem to want me to have dealt with (risk of infection, not really enough build up - what did she want? an explosion??). I had to push her to recommend me back to North York Gen Hospital, which she declined to do, saying that perhaps my GP would do this for me. I called my GP, and she, very kindly, did just that. Friday we drove to NYG where I met lots of the staff that I knew from last March, and they tapped the left side of my chest and drew off 600 ccs of the vile liquid. Then they tapped my abdomen high up on the right side and removed another 2.9 liters of liquid that had been compressing my lung and stomach and caused my ribs to ache and all sorts of other discomforts. In less than an hour I had lost another 7-8 pounds of excess liquid, and I went home walking upright and with an appointment for next Friday, in case the ascites returns. I am still on pain killers for other reasons, but at least I have ruled a new tumor out of the swelling on my right side.

Today I have been letting my insides sort out where they should be, and hopefully tomorrow will be a more comfortable day for me. It better be - I need to be a little more active to help my men get the house ready for our family to arrive from Alabama, Montreal, France and England for an early Thanksgiving gathering, US style. There will be 12 of us at our most numerous, and a great week of feasting and fellowship is on order.

Pleural effusion

This past week for me has been very busy, with days of energy and activity (Friday and Saturday when Alabama relatives were visiting), and days of not being able to get out of bed (Sunday and Monday). Frequent bouts of lower bowel pain were becoming more and more unbearable, though were usually under control by the afternoon. Tuesday, Wednesday and today were eaten up with hospital appointments, but these bore good results though we were all exhausted at the end of each day.

I have made contact now with the thrombosis clinic at Toronto General, where they are referring me to Miriam's friend from St Joseph's Hospital in the West End, who weaned me off the super expensive Arixtra ($30 per injection) and on to Warfarin, only to have to stop it in order to go in today for my thoracic tap. These lovely people gave me a carrier bag of my injections that had been donated by a patient who no longer needed them - a three month supply worth $2,700 that should tide me over until I can get back on the Warfarin.

Yesterday I met with the doctor from the Palliative Care Unit at PMH who is referring me to the Community Health Unit (called Symptom Management) and who are local, available 24/7 and who make house calls. This should cut down significantly the number of visits to hospital, where inevitably we seem to spend half a day for each appointment. I was assessed and my pain medication tweaked and I am now in my second day without pain - a first in a long, long while!!

This afternoon I went in for thoracentesis, but after my ultrasound the doctor was not convinced that there was enough ascites build up to warrant tapping. Instead she drew out a pleural effusion under the left lobe of my lungs - a whopping 1.7 liters of liquid that had been compressing my lung, which has left me 4 pounds lighter and hopeful that I will be able to breathe and sleep easier now. Tonight I am already feeling much better, and am taking pleasure in getting my blog up to date.

We have our pumpkin carved (thanks Cousin Jenn - he is beginning to have a serious underbite, so we will have to prop his mouth open with toothpicks) and are stocked with candies for the Trick or Treaters this weekend. Happy Halloween to all!!

Three liters

As you may have noticed, when I feel sick, I do not blog. If I feel sick and things are going on, then JP or Eric will blog in my place. From this you can deduce that since my last blog I have been feeling worse and worse without anything much going on in my life besides hobbling around and staying in bed. By last week I couldn't walk upright, my stomach was compressed so I was eating less and less, and my lungs were compressed so that I had to sleep more and more upright, most probably caused by a collection of fluid in my cavities due to renewed cancer activity. This Monday was my blood testing for possible chemo - all a go for Wednesday, and when I met with Drs M and L they were not happy with my request for immediate centesis, saying that they did not want to put me at the risk of infection by sticking more needles in me. They did agree for me to have an ultrasound the next day, which did indicate some fluid build-up, but from the belly - annoyingly the thorax ultrasound had not been ordered, so no news there.
Wednesday I went in for chemo - just an hour long drip this time, but I was feeling so much worse that we paged Dr L, who came by, listened to my chest and booked me for a thoracentesis for Thursday, much to my relief. I made it through one more mainly sleepless night and this morning drove out with light heart and bursting belly to PMH.
My bubble of joy deflated when they learned that I was taking Warfarin as a blood thinner and told me that a thoracentesis (chest drain) was impossible - I would have to be off Warfarin for five days to get it out of my system before they would put a needle into my chest. The doctor agreed to do a paracentesis (belly drain), sent me for ultrasound, and then drew 3 liters with two different taps. Immediate relief - I am now able to stand up straight, put on my shoes, eat a meal, lie down to sleep, and am 6 pounds lighter and feel quite good to boot. I'll fairly fly up the two flights of stairs to watch the West Wing on DVD tonight!

Colostomy and eating again

Tomorrow will be two weeks since I went into Toronto General emergency with a blocked bowel. We phoned for an ambulance to make sure that I was able to lie down while waiting to be seen after triage, and I was lucky enough to have been diverted into the fast track room. X-ray, CT scan, enemas, but nothing doing - it was total bowel obstruction this time, and it was painful. By Sunday afternoon I had a bed at Princess Margaret and was wheeled over there through the underground tunnel, by way of Mt. Sinai. Because I was vomiting a lot, they inserted a naso-gastric tube to vacuum out my stomach contents, something that helped the nausea overnight. By Monday the pain was overwhelming, and I was on a morphine drip till they released the built up gas in my intestines. I moved into a private room, which made a huge difference to my comfort.

On Tuesday a possible solution was to have a stent inserted in my colon to ease passage of stool, so JP and I were transported by ambulance to St Michael's (Musical Hospitals again...). Unfortunately, it did not work, because the stricture was too close to the rectum, and a stent would have made it impossible for me to sit.

On Thursday we decided that the quickest way for me to be able to start eating again would be for them to perform a colostomy, so I was once again wheeled through the tunnel to TGH for surgery. I went under the knife at 10:00 pm, and woke up several hours later in much pain. It took about an hour for them to get it under control, and then I slept well. TG has an fantastic post op wing, and they took excellent care of me for two days, after which time I was wheeled back to PM for more recovery. I was eating my first solid food in many days on Saturday.

The next few days were spent learning about pain control, walking as much as possible and taking care of my new colostomy. On Wednesday the stoma nurse removed the rods supporting my stoma and helped me change my colostomy bag. I was pronounced good to go and dismissed from hospital. It was a lovely, sunny day to return home to. Now, two days later, and I am impatient for the surgery pain to subside so that I can get back to some semblance of normalcy. It is wonderful to be eating and eliminating again. Just in time for Canadian Thanksgiving - Miriam and Viva arrive tonight, and we will be celebrating with all our children this weekend.

Surgery Success

Good news: a colostomy was performed late Thursday evening, and Anne is recovering nicely. She is already on a liquid diet and the surgeon came by today and said she could probably start on solids tomorrow! She was in excellent spirits on Friday morning and was only a little groggy from the ordeal and the meds. The nurse had her sitting in a chair for lunch, then took us for a walk around the ward after. Anne is now snoozing peacefully after the workout, but another walk is scheduled in the next couple of hours.

We are all looking forward to finally getting some good food in her tomorrow. Thanks to everyone for finger-crossing, good thoughts and support.

Colostomy

Another quick update: after much consultation, the team of doctors at PMH looking after Anne have recommended a colostomy, which was due to happen today, but now looks likely to happen Friday (as it is now 7PM). We have been moved to TGH, across the street, so we went for another weird trek through the tunnels connecting all the hospitals. The reason we're here is because most surgeries happen here; PMH doesn't have much in the way of ORs, unfortunately.

Though it's not the most appealing prospect, we're happy with the doctors' reasoning for this course of action. Two other options - putting in a stent, and radiation therapy - turned out not to be viable, and not guaranteed to fix the problem, respectively. On the other hand, we're really looking forward to Anne eating again, and eating whatever she wants, to boot. This could take a while (4-6 weeks after surgery, but it's not really clear), and it depends a little on what "-ostomy" she gets. A colostomy (we want this one - pray/hope/cross fingers for this one) means little or no dietary restrictions, but an ileostomy has restrictions related to bulky food. (Colostomy for large intestine, ileostomy for small intestine, and the latter if the former is not viable for whatever reason.)

That's the news for now - time to go back to watching Grey's Anatomy to get Anne into the mood for her operation!

UPDATE: It's now 22:42 on Thursday, and Anne has gone into surgery. JP and I (Eric) are at home now and will return to the hospital in an hour or so, just before she's due to come out. She was in good spirits and happy to be getting the procedure done. Also, the surgeon we spoke to tonight thought that she could be eating normal food much sooner than the 4-6 weeks estimate, so I don't know where that came from. Keep your fingers crossed!

Feelgood update

Eric here again, with some good news: Anne is no longer in pain!

I will keep this brief but just wanted everyone to know that she is in no pain at the moment. Our doctor was concerned enough with how much pain she seemed to be in to get a consult from a chief surgeon, and ultimately asked him to do a procedure which essentially consisted of inserting a tube you-know-where in order to let some gas escape. He did this and the effect was immediate: Anne went from intense, constant pain to immediate relief faster than you can say fart. Another doctor has since commented that it was like seeing two completely different patients before and after the procedure, and I can attest to that. Two hours ago she was in a rather uncommunicative morphine fog and now she's perky, happy, and beating me at Quiddler.

(Incidentally, Anne had been requesting a procedure of this type since Saturday night.)

Life is good again - just wanted to share this great news!

Back to the PMH

Eric here, at Toronto General Hospital. Anne was taken to emergency last night by ambulance after a couple of days of not passing anything via the bowels, including gas. She had also been feeling nauseous, and vomiting. She was in considerable discomfort, and the doctor who came to the house recommended going to emergency sooner rather than later. The ambulance service was used (at our friend Nikki's wise suggestion) for purposes of comfort rather than for any kind of urgency, as sitting up for long periods was very painful to Anne. The added bonus was that the EMS workers dealt with the triage nurse at the hospital, and that Anne was able to wait in a gurney instead of a chair.

An x-ray was taken and showed a lot of gas and stool in the bowels; the doctor subsequently ordered an enema to get things moving, and a second one when nothing happened. As there were still no results, he ordered a CT scan to look for obstructions. It being Sunday, the hospital was short-staffed and we didn't see another doctor until just after twelve noon (arrival at emergency was around 8 PM Saturday). He and the radiologist determined that there was (were) indeed some obstruction(s), caused by the cancer, which is pressing against the intestine from the outside.

They've gotten us a bed at the Princess Margaret Hospital - the only bit of good news so far, as it is an excellent hospital - and the next steps will be to get Anne some pain killers, some medicine to help move the bowels, and possibly a nasogastric tube to extract gastric fluids from the stomach. At this point, she has refused morphine (quite a jump from extra strength Tylenol) and awaits the other medication and procedure.

The news is not good. The worst of it is that Anne has been in considerable discomfort for a while now, especially the last couple of days, what with the pain (which can be like "labour at its worst"), nausea, and malaise. However, she remains stoic to both the pain and the news. We remain by her side - Miriam spent the night with her last night, and will do so again tonight - and hopeful that this will pass.

PMH stay

My latest hospital stay was vastly different from the Sunnybrook ordeal. For one, I was less sick and less medicated, and I was in a private room rather than sharing with two others. The main difference though was that the approach of the hospital was very different. The nursing staff worked as one team and the floor was presided over by one staff doctor who did only that - oversaw the progress of all the patients on his floor, all day, every day. This left little room for missed medication and mixed messages. We were able to keep our door closed too, which meant that inside the room was restfully quiet. There were no visiting hours - patients could have family and friends at any time of the day or night, as long as they were not rowdy. Family could sleep over, and cots and bedding were available to this end. Miriam stayed with me for her two nights in Toronto, coming straight from the train station to the hospital, and Eric slept there on Saturday night when she returned to Montreal. The result was that I actually left on Sunday feeling better than when I came in, and today was feeling strong enough to go grocery shopping with Eric.

I met with my oncologist several times during my stay - the chemo seems to no longer be attacking the cancer, so it is being cancelled. Just my luck that it does still attack hair, so once again I will be bald, and I am already shedding fast and furiously. We will be meeting with her again next Monday to discuss my options (she has given me this week for recovering from the fever - urinary tract infection - and to get used to my daily injections of blood thinner to help dissolve the blood clot).

"Musical Hospitals"

JP speaking: Anne is now at Princess Margaret Hospital, being monitored for an infection she recently contracted.

It has been a busy time! Since her visit to Womens' College Hospital Urgent Care Centre on the Labour Day weekend, where she suffered enemas, she had an unproductive visit at an endoscopy clinic last Thursday, but on Friday was being seen again by Dr M, her oncologist at PMH, and has seen her every day this week.

Monday blood work, Tuesday blood transfusion (could be the source of the infection - she was feeling poorly and vomiting that afternoon and the following morning), Wednesday CT scan, but her temperature was rising afterwards, and a small blood clot was found in her lung, so it was decided to admit her to the hospital. However, no beds were available, so she needed to go to Emergency - at Toronto General Hospital, because PMH does not have its own Emergency. So, she was wheeled on a gurney through a tunnel from PMH to TGH, and the route took her through Mount Sinai Hospital, just for good measure! Very fortunately a bed (actually a private room) became available at PMH a few hours later, so she is now there, fever subsiding, and being well taken care of.

The next steps in her treatment will depend on the resolution of this infection and more thorough results of the CT scan.

She felt a lot better Thursday, her fever having dropped, and Miriam arrived from Montreal and immediately persuaded the nurses to let her have a bed in Anne's room. She is also being medicated to get rid of the blood clot.

This Friday, we are all together at PMH with her, and she is feeling a lot better. (We shared some take-out sushi!). After 48 hours of stability she should be allowed home, so that means tomorrow, Saturday. Yay!

Feeling better

Writing this on Sunday (chemo day 12), and looking back to last Sunday (chemo day 5), the difference in my treatment and comfort this weekend is so vastly superior. Last Thursday I was referred by my GP to a gastro clinic where they were super nice but told me that there was nothing that they could do for me. They concurred that I probably had a constriction in the lower bowel or colon and offered to refer me to another surgeon.

JP began reaching out to our friends in the medical community, and spoke with my oncologist's secretary (just back from a short holiday). Results began pouring in. An appointment on Friday at PMH - very satisfactory - with Dr M and her fellow from the Netherlands, who both spent quite a lot of time with me. Dr M is taking me back on as primary doctor, and any future surgeries or interventions that I may need will be made in-house. She spoke with my surgeon at Sunnybrook, and he is completely out of the picture now, much to my relief. My blood work shows very low hemoglobin, so I will be going in on Tuesday for blood transfusions and another scan to try to see what my cancer is up to (CA125 is very high again...). Our Minnesota mentor has set in motion the collection of a team of doctors to work with me in case a new surgery will be required, and hopefully this will be approved of by Dr M.

As for my plumbing, Dr M wants me to avoid more surgery as long as possible. Her focus, very rightly, is the cancer, so as long as I am passing anything she is happy, and she has given me techniques to avoid more weekend visits to emergency rooms. Constipation is not the problem, so I have stopped taking laxatives and am much more comfortable. I am eating a low fiber diet and taking stool softeners morning and night, and this morning that problem has begun to resolve itself. The best news is that I am to try to gain some weight back, so ice cream is now back in my diet.

In week two of my chemo, I am feeling totally pain free, but quite tired. Hopefully after Tuesday I will begin to feel more perky.

I spoke too soon...

Just when I was feeling that I would get through this latest round of chemo relatively normally (not compounded by the pain from surgery complications), my day 5 turned out to be terrible. I felt bloated, nauseous, and totally ill, and after some phone calls to the home health care people (of course this happens on the Sunday of a long weekend), we were told to go to Womens' College Hospital's Urgent Care center, as it was likely to be much quicker than going to an emergency room. Not so. After 2 hours of sitting on an uncomfortable chair and threatening to go sit in the car where I could recline, they found me a stretcher and put me in a corner for another painful 4 hours. When I was finally seen by the doctor I was sent for X-Rays which showed that I was packed with stool, probably been building up for a month or more. I won't go into details of what followed - suffice it to say that it was extremely painful and ineffectual. They admitted me for an overnight, and I was put on a completely empty ward - nice after the zoo of Sunnybrook - and I had the greatest nurse ever. The next morning I was put on a drip line and blood work taken, and mega doses of laxative administered over the course of the day. When we finally had results it was painful and violent, resolved the current emergency, but didn't seem to have solved the problem. They sent me home that evening with treatment to follow here, but I think that I need a specialist. Tuesday passed in a fog of feeling really bad.

My surgeon called today to cancel the appointment that I had with him this afternoon. He is not interested in seeing me any more and has thrown the ball back to my oncologist - he is convinced that my problems have nothing to do with his surgery, but must be chemo related. I remain unconvinced. So now I am waiting for someone to take control or refer me to another specialist. I am feeling a bit better today, so one day at a time.

Chemo 6

With some trepidation we decided to go ahead with my 6th round of chemo this week. On Monday my blood work showed that I was ready, but Dr M left it up me to decide if I felt strong enough to face the extra pain and fatigue on top of residual post operation complications.

We went to PMH early on Wednesday, but because I am having plumbing problems right now,chemo was put off for a couple of hours till I was given the green light by another doctor, worried that I might have some sort of bowel obstruction - I didn't. But it gave us time to play a rousing game of Quiddler before the poisons arrived. Finding a vein that would accept the line without collapsing proved to be another challenge, and after three tries was finally successful, and then followed a rather boring 6 hours of drips. An interesting aside was that with my nephrostomy bags, I was able to stay in bed for the whole 8 hours, emptying them straight into a urinal - no more dragging the drip pole to the washroom and back. I was a bit wobbly and sore when my treatment was over from not having moved around enough, and so I waited in the hospital lobby for Eric to pick up my brother Rick from the bus station and return to collect me for the trip home.

High on steroids, my day two was the best day I've had in a month. I was energized, pain free and got so much done in the house and garden. Now in day 4, I am back to the normal routine of tiredness and discomfort, but should be feeling considerably better by the first of the week. It is lovely to be surrounded by my men-folk.

We are feeling the effects of Hurricane Earl today - the temperature dropped by quite a bit overnight and rain clouds scud by overhead and branches have blown off the trees. The Labor Day air show has been cancelled today, due to high winds - a feeling of Fall in the air.

Wilson

In the three weeks since he came to live with us, Wilson has insinuated his presence into our daily lives in ways that we could not have imagined before. He arrived during my second week in hospital, accompanied by a beautiful bouquet of cut flowers, an indifferent, shiny metallic pink, helium balloon, who kept to himself and spent most of his time inspecting our living room ceiling.

By the time I arrived home, he had lost most of his shyness and had floated down to people level, his paper tag just touching the ground, joined to his solemn round/flat head by a blue paper ribbon. Now, don't get me wrong - we knew he was just a balloon, but he had an uncanny way of catching the most subtle movements in the air. A door opening, a slight breeze coming through an open window, someone walking through a room, an arm gesture - whatever - he would, without fanfare, begin to move, gliding across the floor until his forward motion ceased and he stood undecided or contemplatively until wanderlust again sent him on his way.

Wilson was without comment, but still managed to convey something - concern, loyalty, curiosity? His shiny, flat head was startling to wake up to - often he entered my front room while I slept or read, and would be in my personal space when I looked up, gently swaying several inches from my face. Someone crossing the living room might find Wilson following along behind, stopping discreetly before that person exited. I think he was happy with us in his own way - he never tried to go outside, though once we lost him for several hours and found him on the third floor, where he might have gone to have a little quiet time.

For two weeks now, we have tried to keep him mobile, cutting bits off his paper tag as he lost buoyancy. A shorter Wilson still commanded a certain amount of respect, but we could see that he was losing his focus. For the past couple of days he has been dragging his chin along the floor, and now he seems to have lost interest in life. We are wondering how to dispose of him, not quite ready to just deflate him completely - is he just, in the end, garbage - is he recyclable - should we bury him in the garden?

He has been a good companion, though a bit creepy at times, full of surprises and making us laugh. We will miss him, though we probably won't replace him. One Wilson is enough, and his would be a hard act to follow.

Getting better

I've been home now for a glorious 11 days now, and am making gradual progress on the "getting better" front. I can walk to the end of the block and back now on JP's arm, and eat all my meals at the table (or outside when the weather is nice). Miriam bought me several loose dresses that are easy to put on and that cover my nephrostomy packs - they are comfortable enough to sleep in, so that during the day I am always ready for visits.

We have rented a hospital bed that is snugged up to the front bay window, from which I can see into the garden, and even watch the traffic if I get really bored. A few days ago I felt focused enough to begin reading again, and I have devoured "The Lacuna" by Barbara Kingsolver and am racing through "Her Fearful Symmetry" by Audrey Niffenegger - both very different, but excellent books. I am trying to sort out my email and Facebook messages, an hour or so each day, but the task seems so daunting that I fear that for most people I'll just have to hope that they are reading my blog to keep up with my progress. JP, Eric and I play Quiddler most days, and I can just about stay up for one game. I can also manage to watch a movie at night before going to bed. I sleep long and restful nights and hope that before long my gut will sort itself out. I am meant to start chemo again next Wednesday, but have an appointment on Monday with my oncologist to make sure that I am strong enough. This kidney ordeal has been so rough that I look back on my days of chemo with something approaching nostalgia - ask me to reconfirm this in another week...

Back in the saddle again

I've been home now for six days and resting well at night. For any of you who have had extended stays in hospital, you will know that it is no place to be when you feel sick. What a joke. I was admitted because my kidneys were failing, but it took a day to figure that out, and for the next two weeks each day involved another test or procedure that showed something else that needed sorting out. One test led to a new medication that caused another side effect that required another test. I had chest X-rays, CT scans, VG scans, dialysis, stents implanted into both ureters (didn't work), stents removed, nephrostomy tubes inserted into both kidneys (working well). Throughout it all I was nauseous, couldn't eat, was losing weight and muscle mass, had low energy and thought that I was not going to make it out alive. I developed pneumonia and low blood oxygen saturation. My body was black and blue from blood drawing and drip lines, and my veins were all flat. My pain threshold had plummeted and I whimpered like a baby at the sight of a nurse. Then, miraculously, the only thing keeping me in hospital was a low platelet count. We watched the numbers fluctuate, and then begin to rise over the weekend, and on last Monday I was released to go home. I couldn't leave fast enough!

Six days at home have seen my appetite restored - I sleep wonderfully on the hospital bed that we have rented that allows me to live on the ground floor, with easy access to the garden. Fresh air and bird calls are therapeutic, and having friends and family drop in for short visits makes me feel more normal. I am slowly gaining my strength back - I can walk around the garden now and eat meals at the table.

I am taking anticoagulant injections each day till my platelet count is normal - JP and Eric have had to learn to inject me (a harrowing, but successful venture), and I am on antibiotics until Monday. After that I will hopefully be free from medication, except for the pain killers that I am still taking for belly pain - and perhaps that will disappear too over the next couple of weeks.

We had a freakish accident occur yesterday while I was taking the sun in the garden. On his way to get me a sun hat, JP put Ranger onto my lap. Ranger's leg slipped between the slats and he tried to jump down, twisting his leg in a very painful way. Ranger, hanging upside down, screamed, clawed my legs and bit my foot. I screamed and managed to lift his leg out of the chair. JP ran back totally confused, and we cleaned up my painful wounds. The nurse came shortly after and did another clean-up - says to watch the area for infection over the weekend. I was going to try to go for a pedicure with Miriam on Monday, but doesn't look like this is going to happen now, as soaking my foot doesn't look like an option any time soon.

Good friend Jenn came from Montreal and spent a whole day with me. Her major contribution was making a contraption to hold my nephrostomy bags, and taking pressure off the tubes, allowing me to be active during the day. Bless her.

Every day I am feeling stronger and more active - thus this blog today. Thanks so much to everyone who has been keeping in touch - even though I have not been responding personally, I have taken strength from your good wishes.

She's Home!!!

Today is a great day as the doctor said Anne could finally come home. There were more ups and downs on the weekend because her platelet count was lower than the normal range and fluctuating. On Monday morning it was still low but getting higher, so she was given the green light to come home, and boy was she ready to get out of there!

Right now she's in the garden enjoying a beautiful day OUTSIDE. She's waiting for a decaf coffee, which is presently being served, and is about to eat some crackers and cream cheese. Thanks again everyone for your good thoughts and words; I'm sure every one of them counts.

I hope the next posting you read will be an authentic Anne entry!

Down but on the rise...

(JP here). Ostensibly wireless internet is available for visitors & patients at Sunnybrook, but access is limited. So these blogs are generally written at home.

Thursday was harrowing. After a wonderful start, including lunch in the food court for Anne and Eric, Anne started feeling gradually worse in the afternoon. Alarmingly tired, in some pain, unable to eat again, drinking little. She wanted to sit up, to go for a small walk with me around 6 pm but when she tried, she felt faint. (Vagal syndrome, the passing doctor proposed). She then got back into bed and decided to have some oxygen after all (in spite of nausea) since her saturation level was low. She “stabilized”, and her friend Rikki Blitt came to spend the night at the hospital.

This Friday morning, Anne reported being a bit better, and was again hungry, had some breakfast, and a bite of lunch after Eric and I arrived, but was definitely not ready to brave a major outing again. She is low on potassium (go figure – when she arrived at Sunnybrook 10 days ago her potassium was dangerously high), so is mandated to take pills again, and these make her nauseous. Nevertheless, she managed them, crushed and taken with banana. She was also put back onto intravenous drip as it was thought she had lost so much fluid yesterday (mostly urine into the nephrology bags).

Except for the potassium, and a sudden drop since yesterday in the platelet count, her blood indicators are all better, on the way to falling into range. The platelet situation needs to be monitored and could be a result of blood thinners.

All in all, Anne is still feeling a moderate upswing; ate again this evening and went for a short walk with Eric. Presently the plan remains to have her discharged Monday.

Tonight Miriam is coming for the weekend, and cousin Jed is due for a week’s visit tomorrow.

More good news

A quick note to say that Anne continues to do well. Today she is off the oxygen tubes completely and maintaining a high oxygen level. She is feeling good and her appetite is returning. She didn't sleep well because of the oxygen, ironically; it irritates her to have the tubes there and she says it leaves a smell and a taste in her mouth that is unpleasant.

But this morning she craved a navel orange cut into sections. They had other types of oranges in the cafeteria, but I bought her one and it seemed to satisfy. It was heaven to watch her devour them with relish as she read the morning paper (also a first since she's come in). After this she eagerly awaited the breakfast tray, and in particular the nescafe. She drank the coffee and ate about a third of the pancakes that came with it.

Her urine output had decreased to what seemed like a more normal rate in the meantime. In the late morning, we watched an episode of Gray's Anatomy together; again, something she just couldn't muster the energy to do before. Her nurse Elein told her later that she could be wheeled down to the food court for lunch, and so we had them call for a wheelchair. It was very exciting to go somewhere that wasn't for a test or a scan for once! She ate some chicken teryaki, again a small amount, and afterwards I was thrilled to be able to take her outside for the first time in nine days to breathe some real air. Fortunately the sun was shining.

We didn't stay long, though, as the experience of being in the chair was becoming a little tiring; she is coming off a very rough two weeks, after all. We returned to her room and slept for a while.

This afternoon her doctors came by with the wonderful news that they expect to discharge her on Monday! We are so excited to have her coming home and feeling well. Thanks again to everyone for your support and good vibes!

Waiting Game

(JP here). Tuesday was hectic. Anne started Ampicillin, a more appropriate antibiotic for her infection. She was taken down for an ECG, then a VQ (Ventilation-Perfusion) Scan, then had a chest X-ray in her room. (One nasty thing was the 1-hour wait after the VQ for a porter to bring her back to her room. We intend to complain about it).
Doctors and others (including the Rapid Response team) were concerned about the build-up of fluid, and nevertheless recommended a blood transfusion, and tube insertion last night. In fact her indicators improved a bit, so they decided against both, although she is due to have the nephrostomy tubes today at 1 pm. After she returned to her room she was given an oxygen mask to increase the flow to her blood, and felt much better, although the mask and the excess oxygen did not help her sleep.
Still, she was perky this morning, but now sedated as she is preparing for the tubes.
We have also been contacted by our dear thoracic surgeon friend from Minneapolis, who may be trying to help from afar - and any such help is most welcome!

UPDATE: Anne's tubes are in; she said she liked the doctor, who explained things well, the procedure went fine, and she already has a bagfull of urine. Still a bit drowsy, looking forward to eating tonight...

Postscript: Eric here, at the hospital. I just wanted to add to the above that since yesterday, early evening, Anne's energy has gone up and her nausea has diminished. The difference was enormous, and tremendously uplifting (at least for me). On Tuesday morning, sitting up and brushing her teeth was an ordeal that made her extremely nauseous. Walking to the bathroom was not an option. On Wednesday morning, sitting up and brushing her teeth was a breeze and she felt fine. She walked to the bathroom against orders and literally hopped back into bed afterwards. We aren't sure what to attribute the change to, but the oxygen mask seemed to be most responsible.

This change in feeling has continued today, and if we're lucky, she'll be able to hold food down. She certainly seems to have a healthier appetite at the moment, which will soon be put to the test. It's perhaps too soon to say we're out of the water, but I would say that the signs are encouraging. If nothing else, it's wonderful to see her feeling much better and to have long conversations with her.

Hospital Update

On Sunday night, a doctor came around and gave us some news: first, that the infection was not in the urinary tract, but in the blood. The next step was to determine the type of bacteria in order to treat the infection with the appropriate antibiotics. Second, that there was some kind of "pocket" that showed up on the x-ray around the heart that they wanted to follow up on with another x-ray, apparently to determine whether it was linked to the infection (pneumonia) or if it was a result of Anne sleeping in a particular position. Third, Jean-Paul had noticed on the labs that her levels of creatinine had increased - abnormally high creatinine levels are used as a marker to indicate renal malfunction - and so I pointed this out to the doctor, who was unaware because she had not checked the most recent lab reports. This ultimately resulted in the scheduling of a CT scan for Monday morning to determine whether or not the stents were working properly.

Overnight, Anne remained nauseous and had her fever return. She also vomited a little a couple of times. In the morning, she had her second chest x-ray and had her CT scan around 1:30. By this time, her fever had gone. She was quite keen on drinking a soy drink that Miriam had bought in the cafeteria, and did so in small doses. She ate the smallest bit of a cracker. Later in the day, she seemed to perk up and requested a coke and some ice cream. Small portions of these items were obtained by Miriam, mixed, and avidly consumed by Anne, and she continued to drink the coke. This seemed to relieve some of her nausea, to our relief, and to perk her up some more.

A doctor from urology came in the late afternoon to recommend an ultrasound to determine whether Anne's stents were functioning. I countered that she had just had a CT scan a few hours earlier for that very purpose, which surprised him and caused him to leave to have a look at it and return about 45 minutes later.

The next big piece of news was that Anne's hydronephrosis - swelling of part of the kidneys and ureters - had not gone down. (Monday's labs had also indicated another rise in creatinine.) The assumption was that the stents were not working properly, and therefore that they would recommend inserting nephrostomy tubes into her back and kidneys. Essentially this means eliminating urine via these tubes straight from the kidneys and into a bag.

While this may not be the best news, we may take some comfort in assuming that Anne's persistent nausea has been due to the stents not functioning. At this point our desire is to have the nephrostomy procedure done ASAP so that she can start being and feeling healthy again, and come home. The doctor also suggested that this procedure will be less painful than the stents procedure. Further, there is the possibility that renal function will return at some point in the future.

There has been no update on the status of Anne's infection at this point (Monday evening), nor on the results of the second x-ray. Her oxygen situation seems to be better today. Miriam has spent two nights at the hospital with Anne, the first in a chair while resting her head on the foot of the bed! Last night she slept in the little bed with Anne, but we have now brought a mattress into the room so that one of us can be with her at all times.

Thanks for all the good vibes! Knowing that so many people care is a great support to the family. If anyone is aware of any mistakes or misunderstandings of my interpretation of the medical information in this and other postings, I'd really appreciate correction in the comments section. Thanks again!

Still in hospital

Eric here. Unfortunately, Anne is still in hospital as her nausea has not let up much since her arrival here Tuesday night. They have had her on three different anti-nausea meds, but neither has done the trick. The doctors don't really know what is causing it, but one theory is that she has a lot of toxins in her system that need to be flushed out; a consequence of her recent renal failure.

On that topic, she never did have another dialysis session, which was a relief. However, she did have stents inserted in her ureters (lines between the kidneys and the bladder) because there were some obstructions there. The experience was very unpleasant and painful, but she has endured everything with typical and yet amazing stoicism. We were further dismayed to learn that these stents will have to be replaced in three months.

She has had intermittent fever over the last twenty-four hours or so, but most recently her temperature was normal. The doctors suspect she might have a urinary tract infection, so she has been given antibiotics. She has been eating very little, and occasionally has not been able to keep food down. A doctor this morning also thought she was not getting enough oxygen and so she now has tubes going into her nose with a feed.

Anne and the family are extremely appreciative of all the support we have been given. Due to her present condition, however, we would ask that friends check with us before coming to visit. Besides the nausea, she usually feels fatigued and sleeps a lot.

In spite of this gloomy report, we remain optimistic and hopeful. Anne is fighting through this. We all want to get her happy and home. Time to send out your good vibes!

Addendum

On Thursday afternoon the various urologists and nephrologists decided to put stents in both ureters. A rather painful procedure, visible to Anne through live TV from a camera inserted into her (cystoscopy). But the idea is that now the kidneys will be relieved. During the procedure, it was determined that the ureters had been affected as a sequel of the surgery.

One step back ....

This is JP writing. Anne has not been feeling good for a couple of weeks, (bloating, unable to eat, no bowel movements for 5 days, even though we saw her surgeon "post-op" last Wednesday, and her GP on Friday, with those complaints).
We were advised by Brenda (secretary at PMH) and by our friend Jimmy (who works at Sunnybrook) to go to emergency if things did not improve, so I went to Sunnybrook with Anne Tuesday night. They did a CT scan, and it turned out after a blood test that her creatinine was very high, indicating kidneys not functioning properly - also her potassium level was high. Wednesday, while Eric, Carolina and I were visiting, they did a dialysis, but the machine malfunctioned after an hour or so. Still, that was enough to bring down her potassium to normal levels, and her catheter showed good urine flow. She also began to eat and evacuate more normally.
Next? They were thinking of putting in tubes to help relieve the kidneys, but now, this Thursday morning, think maybe that will not be necessary, may be healing herself. She is in good spirits and definitely feeling better.
Doctors still looking around for a cause, more blood tests, more diagnoses. She will be in hospital for a few days - but for sure the chemo planned for next week will have to be put off.

A little better all the time

I'm beginning to get anxious calls from friends, so it must be time to update my blog once again. Coming home from the hospital was a big deal for me. I'd always heard that hospital was where you caught stuff, and with a big incision in my tummy, I was feeling vulnerable. The ride home was rough, with each bump shifting my insides. It was lovely to be eating real meals outside, to be sleeping in my own bed and to be taking slow walks around the neighborhood. I had learned that keeping to a strict schedule of Tylenol and Naproxen was important, and I was feeling pretty good.

On day 12 I went to my family doctor to have my staples removed, and to touch base with her. It felt good to have a snag-free tummy again, and no, my belly didn't pop open once the metal was removed. Just having a doctor to chat with about all sorts of things was nice - she explained a lot about the healing process to me, and said that I was progressing very well. She thinks that I could begin to cut down on my pain killers, since I am feeling so well.

Day 13 I went to see a naturopath who talked a lot about dietary treatment that could be used in conjunction with chemotherapy or after chemo is over. It would be nice if the MDs could work with NDs, but that isn't happening yet in Canada, so I left with a list of supplements to run by my oncologist to see what she will allow me to take during chemo. If nothing, then I will get back in touch with my ND when I have exhausted my chemo options. I am taking only 1 Tylenol every 4 hours now, as well as the Naproxen.

Day 14, yesterday, I decided to stop taking the Tylenol, and in typical Super Woman mode I decided that I was ready to shop at Costco. Bad plan. First of all, the half hour car ride was about all that I could take - I only managed to get to the frozen food section before I was on my knees, and I spent the rest of the hour sitting on a bench in the food court while JP and Malle finished shopping. I couldn't get back home fast enough and take a couple of Tylenol. So my lesson has been - 1. listen to the experts - 2. it takes about 6 weeks to heal completely - 3. pain killers are your friends - 4.rest often (lie down) during the day.

Day 15 and I am back on track with the Tylenol. I had a couple of visits from friends this afternoon, and a couple of mid-day naps, and am feeling great now. Miriam will be here tomorrow with Viva, so the house is being super cleaned and healthy food prepared in advance. We are all aware that her critical eye will soon be upon us!

Post Surgery - days 3 and 4

Saturday (day 3)I got out of bed, washed myself, dressed in real pajamas and had a short walk around the corridor. How nice not to have to have hospital gowns floating around me! Was served "breakfast" and couldn't face the jello. PASSED WIND!!!

The doctor came around and pronounced me ready for real food, and I lay waiting for lunch to arrive for the next couple of hours. My first real meal was a creamy soup (yum!) and a dry egg salad sandwich. I ate the inside bit of a half sandwich, then drank my milk. Most of the afternoon I lay in bed feeling digestion taking place, new pressures in my gut, getting up, and passing wind. Our room was full of my family and the other Anne's, and there was much cheering going on from both camps when there were audible digestive changes. I was feeling a bit worse than yesterday, probably because they were reducing my pain meds prior to dismissal. They dismantled and took away my drip station, but kept my lines in, in case I became nauseous.

Supper was sausages and instant mashed potatoes, covered in brown gravy, along with steamed carrot strips. You have to wonder if they know who they are feeding when they fill the trays, but my meal was different from my roommate's, so I guess that there is someone at the helm. All my nurses were saying that I would be dismissed in the morning - not soon enough.

Sunday (day 4). Washed, dressed in civilian clothes, had my first bowel movement (apologies to the squeamish), and felt like I had won an Olympic Gold Medal. The doctor on call came round and pronounced me good to go. Nurses removed my lines, and JP and Cathy came to collect me. I was moving less well today, and got my pain meds a little off schedule. Seems that these regular interruptions by nurses night and day serve some purpose after all.

We arrived home to a clean, bright house, a gorgeous bouquet of flowers, and a wonderful meal. My challenge now is to eat less than I want in order to keep the pressure in my bowels down and pain at a minimum. I took one narcotic pill (oxycodone HCL), but didn't feel a whole lot of difference. The risk of constipation from it helped me decide that I would rather just depend on the anti inflammatory (naproxen) and extra strength Tylenol for pain control for the next week.

I am sleeping wonderfully, have no trouble negotiating the stairs, and am reasonably pain free. I wish I had snagged me one of those hospital gowns though - I cannot wear anything around my waist because of risk of snagging one of my 31 staples, but think I have found a solution by wearing a long tee shirt under a shift dress.

Hospital - days 1 and 2

My operation was a bit like my first chemo - it was in and out, followed by "what was all the palaver about?" On Thursday morning I woke up at 7:00, showered and dressed, and by 7:45 we were in the car and on our way to Sunnybrook. I was admitted to hospital, peeled away from my family and prepped for surgery - clothes bagged, lovely gaping gown put on, laid out on a gurney in a little curtained area and covered with an inflatable heated blanket. A drip line was inserted into the back of my left hand, and blood was drawn to cross check for typing. Then JP and Miriam were allowed in and rode up to surgery with me. They kissed me goodbye and went off to the waiting room, and I was wheeled in the other direction. In the hall outside the OR, I met with 6-8 doctors who would be with me inside - My surgeon and his assistant, the anesthetist and his assistant, and others I can't remember now. I was told what they expected to do, and it was my chance to ask last minute questions. I have to admit that for once my mind was blank. When the room was ready, I was wheeled inside the OR. Things began to happen quickly - I was given an injection of antibiotics and was attached to a drip. I was given an oxygen mask to suck on for several breaths, then asked a series of very interested questions about where I had lived and worked recently. I remember getting to Italy - and then I woke up in Recovery about 2 hours later. I stayed there till about 4:00 pm, with people fussing about. I discovered a sausage shaped bandage running from above my navel to the top of my pubic bone, and I felt amazingly comfortable.

At 4:00, I was wheeled off by the same nice nurse. As we entered my floor, I could see Miriam, Eric and JP at the end of the hall, and we waved to each other in relief. My room was a double, even though I had signed on for a triple ward - the good luck of the draw! - and my roommate was another Anne who had had surgery just previous to me. She too had peritoneal cancer, and it turned out that we shared both oncologist and surgeon. This gave us an immediate sisterly bonding, and her good natured wise-cracking, easy to get along with nature, and wonderful family made it the best possible environment for healing.

Thursday evening (day 1) I was able to sit up on the side of the bed for 5 minutes, with the help of a morphine pump. A couple of hours later, I pumped again and sat up for 15 minutes, till once again I felt nausea. I slept deeply, in 2 hours chunks - interrupted for pills and taking of vital stats.

Friday morning, my surgeons visited on rounds, and told me that they had removed my appendix as well as the female stuff - there was a cancerous cluster there - they found studding on the pelvic floor, but it seemed to be inactive (don't remember if it was removed or not) - that everything that remained was microscopic, and that they were pleased with the operation and the results. I was still feeling no pain, sat up for half an hour without nausea, and took a walk down the hall before lunch. Calling it lunch is being generous - it was just like breakfast - juice, hot water, lemon jello. Miriam and Cathy brought me wonderful homemade broth that tasted soooo good. I took another walk around the halls in early afternoon, and another with 3 laps around the unit later that day. By evening they were letting me trot around without human support, dragging my drip station with me. By this point I was not using the morphine as the other drugs were fine alone, and I suspected that my little bouts of nausea might be traced back to the pump.

Time was measured by meals - supper was like lunch/breakfast - and I was told that I could not have real food until I had passed wind (farted, for the less cultured). The nurse told me that there was lots of noise in my bowels and that walking would eventually work the air out, and once there was proof that food would not just go to my bowels and stop, they would let me eat. I went to sleep that night to the sound of "The Shrieker" an elderly gent with dementia who lived two doors away because there was no bed for him on a more appropriate ward. I was filled with compassion for his roommate of one week...

Surgery Day

We are very pleased to announce that Anne has come through her surgery in good shape. An unexpected appendectomy was performed in addition to the scheduled procedures, and she is presently resting in hospital.

Jean-Paul and Miriam went with her to Sunnybrook early Thursday morning for an 8:30 check-in. She was then admitted around 10, and was experiencing little to no anxiety. She doesn't remember falling asleep, but only answering a bevy of questions from the anesthesiologist about her early life.

The surgery was completed and Anne was transferred to recovery around 11:45, where she remained in a state of semi-consciousness for several hours. It was during this time that she overheard some staff talking amongst themselves about her appendectomy.

At a little before 4 p.m., Anne was moved to the bed where she will complete her hospital stay. She was greeted there by Jean-Paul, Miriam and Eric (her favourite) with much relief and emotion. Amazingly, she was very coherent, felt good and was all smiles. The family stayed with her until about 7, during which time she dozed a little, made and laughed at jokes, and even sat up (to the amazement of all present). Based on the events of this afternoon, a quick recovery is expected.

Cathy and Anne-Marie were not at the hospital as the number of visitors was very limited today, but will come tomorrow.

Many thanks to everyone for your support, attention, and good wishes.

Countdown to surgery

Monday's appointment with Dr M was very good - we had her full attention and she answered lots of my questions before I asked them. She was concerned with the rise in my CA 125, and wondered if that would compromise my upcoming surgery (not an issue says my surgeon). She says that I am to let her know when I feel strong enough for another chemo (she wants another three) after surgery. I'm not looking forward to that, but then, I wouldn't want to not have them.

The past week was busy with lots of work on the house and in the garden. We biked to the Spit (I rode from home to the lighthouse and back)- I was exhausted by the end - too long and with strong wind - and arrived back at home ready for a long rest. In the evening we walked to the beach to sit in the sand and watch the Canada Day fireworks - splendid! Today, Saturday, we drove to a friend's house near Peterborough, our first foray outside the city since December. The weather was beautiful, and it felt great to get away for a few hours.

Tomorrow begins my countdown to surgery - I take the first of 5 daily disinfectant showers and fanatical clothes changing to help keep super bugs out of the hospital. Monday will be my last day of solid foods. Tuesday and Wednesday I will be consuming only clear liquids - we've stocked up on Jell-o, fruit juice, Gatorade, clear broth and popsicles - Yum!! Nothing at all for four hours before I'm admitted, except for my thyroid pill.

I'll get the call Wednesday afternoon that will confirm the time of my check-in and operation on Thursday. I have opted to stay in the 3-bed ward, rather than the semi-private, more expensive option. I wasn't given a private room option, and can't see the difference between sharing space with 2 people or 3.

The troops are gathering - Cathy is here, Anne Marie has just flown in from Paris (she has a cold, so will probably be sleeping at her dad's house), Miriam arrives Tuesday evening. It seems a waste that they will be here while I am in hospital, but it will nice to have their visits, I am sure.

My next posting will be post surgery - not sure when I am going to feel like having my computer on my tummy. I'm feeling very good, looking forward to the surgery, and trust that all will go well. Thanks for all your good wishes.

Oops

I seem to have gotten the wrong message - our meeting at Sunnybrook yesterday was not with the surgeon - I appear to have had my one and only session with him two weeks ago. Instead, I met with an anesthetist to go over my file, have multiple tests run, to make sure that I am ready for surgery, physically. Blood was drawn, X-rays of my chest taken, EKG measured. My CA 125 has risen to 400, which was not good news, but overall I seem good to go. Monday, when I meet with my oncologist at Princess Margaret, I'll have a chance to get some answers to my questions, but I must prepare well so that I get the most out of my 5 or 10 minutes with her.

I am keeping busy with gardening, work around the house and visits from friends. Eric has a bad cold, and is keeping away from me, wearing a mask and trying to get well fast. This is his second since his arrival in March - not much fun! Ranger has found a new place to drink - the bird bath - and he sends out the message that he is thirsty if I let it dry up by lying in it. What must the birds think??

Chemo 5

Yesterday I got the unsettling news that my surgery was going to be postponed for an additional 2 weeks, which felt like a postponement of convenience vs the best plan for my treatment. I panicked about running through my chemos too fast, not having enough for post surgery. I still don't understand how the maximum number of treatments is arrived at, and if I sound like I am babbling, it is because I am confused.

Anyhow... This morning we were wakened at 7:30 with the good news that someone had cancelled their surgery, and that my operation would go forward as previously thought, on July 8th. This is a wonderful way to start the day, and all the questions of yesterday have just become moot.

This 5th round of chemo, begun last Friday, is going well. I have been less uncomfortable and more focused and energetic for days 4 and 5, that are typically my bad days. Wednesday, day 6 is not great, but I am pretty sure that by tomorrow I'll be back up and running once again. I don't know if an easy chemo means that the chemicals are not working, or if the cancer is on the run???? Or is the iron that I am taking in preparation for surgery giving me more energy? Maybe it doesn't matter - my oncologist says feeling good means doing well, period!

Surgery Alert!

Eric came back from Montreal last night, and we all went to a very satisfactory meeting with my new surgeon this morning. Sunnybrook is a brighter, more relaxed hospital than Princess Margaret, but the parking is super expensive. I was so impressed with the amount of quality time that I was given with Dr C. He was well-versed with my case, and his direct, clear assessment of my options made it an easy decision to opt for surgical intervention over just chemotherapy. On July 8 he will remove my uterus, ovaries and fallopian tubes. He will also take out anything else that looks suspect, most probably the omentum, and he says that the cancer has shrunken significantly since the beginning of my chemo. I am feeling very relieved to have a consensus for having surgery and to know where I am going in all this.

This week I have been healthy and energetic, and I will try to hold this feeling in my head for the bad week of chemo coming up very soon. I will have round 5 on Friday at Princess Margaret, and will begin taking an iron supplement in preparation for my surgery next month. Miriam will be arriving for a few days on Friday night - poor thing, she seems to be here for my worst days...

The weather is disagreeably cold and wet - fine weather for going through my closet and getting rid of things that I haven't worn in years. I'll be dropping off bags of clothes and household items to the nearest women's shelter tomorrow.

Checking In

It's been a while since I last wrote, but nothing has changed on the health front, except that this week three is fantastic. I feel almost like I have not had chemo. Except for a bit of tingle and numbness in my feet and legs, and general weakness, I am fighting fit. The weather has been sun and rain for the past three days, and this has been good for the garden. We've been eating at the picnic table as much as possible, and the rest of the time are enjoying the sunroom, from which we can watch the squirrels in the back yard.

Work continues with the house, and we have furnished two new sleeping areas. The downstairs is now comfortable - just in time for my next treatment. Wednesday will be my appointment with a surgeon for a second opinion. If he convinces me that surgery will be a good option, then that will be my summer. If he convinces me that chemo is the way to go, then I will have my 5th chemo on Friday. It looks like a lose-lose situation, but hopefully I will end up with the best treatment available.

A friend who is through with her chemo, though not quite finished with her treatment, brought me some new caps for the summer and a red wig, which I wore today to JP's choir concert. He left the house before me, and didn't know that I would be wearing it, and couldn't find me in the church audience. It was funny to see him scan the crowd and move right over me time after time. We did find each other during the intermission! The concert was inspiring, and I got to catch up with some good friends who were there to cheer my man on.

So another 5 fantastic days - I'll post again after my appointment Wednesday.

Second Opinion

At the end of last week I heard back from my wonderful Minnesota friend, who had shown my file to his colleague, a specialist for my kind of cancer. He reported back that he felt that, without hesitation, surgery was my best option at this time. Needless to say, this new information filled my weekend with confusion, and not a little bit of anxiety. After consultation with more of my medical friends, I went to my scheduled oncologist appointment yesterday, and was pleased, and relieved, to learn that she was a fan of debulking (but went by her surgeons' recommendations), and so suggested a second Toronto opinion with an aggressive surgeon at Sunnybrook Hospital. I am waiting now to hear if she has been successful in getting me a quick appointment - it is important that I have this second opinion before my next chemo in a week's time, as there are only limited numbers that I can have, and I must be able to have some after surgery.

Once again, it feels weird to be hoping for invasive abdominal surgery, but my doctor says that chemo alone will not eliminate the cancer.

I am at day 14 in this 4th cycle, and I am feeling just great. We are trying to sort out the house - today I will hang curtains in the sun room and try to get rid of some free funiture on Craig's List.

Victoria Day, 2010

Saturday should have been a bad day for me, but I began to take my Ibuprofen last night, and seem to have stayed ahead of much of my typical post-chemo discomfort this time. I woke up relatively comfortable and had a very active day, trying to keep up with the work that my men-folk were putting into painting, sanding, varnishing. Fatigue hit me by mid afternoon, and I slowed right down for the evening. There seems to be a curious lack of the stabbing pains that I usually get - again, hopefully this is the pain killers working.

Sunday was another work day, and, as a day 5 was typically the worst one in the cycle. I was quite tired, and rested often while others worked around me. The painting in the kitchen is complete, and Rick and JP worked long hours installing the lovely wooden shelves - I'll try to post a photo in the next few days - while Eric painted on in the dining room. Miriam arrived from Montreal on the evening train, so once again the family is complete.

Monday, Victoria Day, and it is hot outside. I am feeling better today and not taking any pills, though fatigue is a constant companion. We (I spent a lot of time flat on my back) worked like bees all day with cleaning, painting, cooking, moving furniture, and finally rewarded ourselves with drinks in the garden. Tonight Eric and I watched the fireworks from our top floor - the others walked down to the beach for a front row spot. We;ll all relax in front of a good movie this evening. Tomorrow we should move our kitchen things down to the ground floor and celebrate the good weather with our first meal outside.

My films and reports have all arrived in Minneapolis, and I hope to hear back from our good friend in a few days to see whether or not he agrees with the treatment that I am receiving here. I don't imagine that there will be new information, but it will be nice to have a fresh set of eyes looking at my file, and to know that a friend has my back.

Chemo 4

I went in for blood work on Wednesday, and my neutrophils had gone up to a healthier 1.9 from 1 the previous Wednesday, so chemo went ahead as scheduled. I was tired by the end of the day, mostly because I had been lying down for 6 hours. I increased my sleeping pill to 1/2 to counteract the steroids, and slept well for about 7 hours.

I woke up today full of pep and had a very active day, driving to North York Hospital to pick up a CD of my first CT scan to send to Minneapolis, and buying a beautiful leather rocking chair and a side table from Craig's list. Rick, Eric and JP were busy installing a wooden backsplash over the kitchen counter, and we found the shelving in the garage that had been taken down when cupboards were installed a few years back. By tomorrow they should be on the wall, and we can begin moving our things downstairs. At some point we are going to have to find time to grocery shop - we are out of everything! I mowed the lawn this evening and will try to do some gardening tomorrow while I still feel good. Saturday to Tuesday will be my dreadful days, and then it will get better for the next week.

Reprieve

This week's postponement of chemotherapy has been like a gift of good days, especially since the weather has improved and there is still lots of painting to do on the ground floor before we move down. Yesterday I finished painting the kitchen and sunroom, and will look for some grey tiles for the counter backsplash today. We'll be putting up the shelves, and then will begin to fill them with our pots and pans - I am already using the fridge to keep extra food. I hope that by Wednesday we will have begun to move the kitchen and dining room things downstairs.

I am sleeping now with just a quarter of my sleeping pill, and imagine that a lot of this is anxiety that I might not be able to fall asleep. I'll see what happens during chemo - if I have to revert back to taking the whole pill again.

Our Minneapolis surgeon friend has requested to see my file, complete with slides and scans, for a second opinion. I don't imagine that he will find out anything different, but since making the request, I feel that I have my oncologist's full attention. It is a great feeling to have someone watching your back.

Steph is progressing with the exterior painting - the second coat is now on everything except the second floor - he will need to rent a longer ladder to reach there. It is all looking fabulous, and I can't wait for it to be completed so that I can concentrate my work on the flowerbeds below.

I am feeling very good, and have very high energy that I still must hold in check so as not to exhaust myself. I hope that my neutrophils are high enough on Wednesday for me to start round 4 of chemo. Life is fun, and it is almost barbeque weather!

chemo postponed

My blood work today showed an improvement in neutrophils - from .7 to 1 - since Monday, so I have been booked in for chemo next Wednesday. I didn't need to have an injection to boost my immunity as my body seems to be recovering on its own. I am a bit anxious to postpone the chemo for a week, but this will give me another week of feeling really good, so I'm not really complaining!

The house painting is progressing - outside and in, and as we finish one room, I will try to furnish it. It is amazing how empty the place is right now - it feels like a ballroom, but that won't last once we are living downstairs. The weather is still beastly here, and I am trying to keep all the little plants alive inside till I can transplant them outside. The wisteria is still beautiful, but the leaves are growing in quickly, so the best time for photos has already passed - the flowering crab apple is already losing its flowers, but lilac is in full bloom.

We had sad news from France today, that our beloved cousine Francoise has fallen into a gentle coma, from which she is not expected to awaken. Another cancer casualty, and our family feels broken.

Where have all the flowers gone?

This week I have been super energetic, and busy with friends and beginning the move into our downstairs quarters. We've begun by removing wall units in the kitchen, prepping the walls for painting and choosing colors. You know that you have great friends when they offer to come over and clean ovens and bathrooms for you! We are waiting for the weather to clear for our painter to finish the exterior of the house - for now he is painting ceilings inside.

Yesterday I went in for routine blood testing, but my white cells are too low for chemo on Wednesday, so tomorrow I will go in for more testing, and if they are still not back to where they should be I will be given an injection to boost the production - all this may push my chemo back by two weeks - a real disappointment, but then it will give me two extra weeks of feeling good (unless the injection has side effects that I am unaware of). I had an excellent meeting with my oncologist, who was very focused on me and took lots of time to hear my concerns and answer them in depth. She is prescribing another three rounds of the same chemotherapy, followed by another CT scan and assessment.

I have become a Craigs List addict - have bought a beautiful bed, picnic table and chair, and am selling my kitchen cabinets, and along the way meeting some really nice people. Cold and rainy here for the past week - I want Spring back!

The good, the bad and the ugly

Today was my meeting with the surgeon to go over my CT scan results. Miriam, Eric and I drove down to PMH for my 9:00 appointment. After waiting for three hours (the doctor's schedule had been shuffled because of a meeting, and my scan results were late getting to her office)we finally met with her to the disappointing news that surgery was not my best option. I suppose we were hoping that there would be a nasty tumor that could just be removed.

My cancer now has a name - primary peritoneal cancer. A diffuse tumor in the abdominal cavity involves blood supply to the bowel - surgery would remove a big part of the bowel, there is too much risk of complications, and they would not be able to remove it all. Because we know that it is also in the thoracic cavity, the likelihood of a cure is low, but not zero.

On the brighter side, I am responding well to my chemo, so will continue for an additional three rounds, and will then be monitored every three months. If the cancer returns before six months have passed, then my prognosis will not be good (an indication that the cancer is resistant to the drugs). If it does not return for a couple of years, that will be a good thing. I look forward to lots of feel-good days during the summer, and am relieved not to have invasive surgery and painful recovery in my future. For now, I am living each day as it comes, smelling the roses, and determined to make the most of what I have.

CT scan and feeling great

Day 11 feels excellent! Miriam came back to Toronto Thursday evening, and she and Eric took me to my CT scan yesterday morning. I was in and out in less than ten minutes - laid out on a movable tray, full of barium for the digestive system and dye in the circulatory, and then sent through a big donut with lasers and x-rays several times. Right in front of your eyes is a glowing space that says "do not look directly at the laser." Is this a bad design, or what? As with many tests, the preparation was more disagreeable than the actual event. A barium shake is not bad tasting, but it is the quantity that gets to you - half at bedtime the day before, and the other half an hour before the scan. It has put me off my breakfast smoothie - just a decaf coffee and granola for me this morning!

After the scan, Miriam and I spent an hour or so painting the garage doors - I was being very good, keeping off ladders and going slowly. This morning we will try to finish, but rain clouds are coming in, so we may have to wait till after the weekend for more outdoor activities. If we stay indoors we may be forced to clean house - nooooooooooo... I am feeling energetic and discomfort free, and looking forward to ten more days of the same!

Round 3 - over the hump

In spite of my rapidly dropping CA 125 results, I have been disappointed with the way I am feeling during the first week of this round of chemo (3rd). I was expecting to begin to recover by day 6, but still, on day 7, I was very weak and generally feeling bad. I spent the morning on the internet (usually not a very smart thing to do) to find out how to interpret results from my blood work, and concluded that my red and white levels are all down (which would explain rather nicely why I am not bouncing back as quickly this time). By evening my body was feeling more normal, but I went to bed with a belly ache - can I be eating too much? When I feel sick, I find it difficult to know if my stomach is already too full, or if I need a meal - sometimes I just eat because something needs to change.

Today is day 8 - Like magic, I woke up feeling good, and I am forcing myself to stay rather inactive today, in spite of wanting to be outside working in the garden. Eric drove me to PMH to pick up instructions and a mix that I must drink before the CT scan on Friday. These next few days are my most susceptible, and I must be careful not to catch an infection. Friends are visiting, the sun is shining and life is good - the outdoors calls me, but it is deceptively cold.

Chemo 3 - and CA 125

Wednesday I went in for my third chemo session - the wait was long because of a staff meeting that stopped the intake for about an hour - annoying for people like me who were in for the whole day. I was lucky to be given a private room with my own bathroom when we were finally admitted - just the luck of the draw. I continued taking my sleeping pills during this whole past couple of weeks, and I think that coming in well-rested made a lot of difference to the way I reacted this time to the steroids. I slept well Wed. night (a full 8 hours), but only 5-6 last night. Could have been because we had to get up early this morning for a family counselling meeting at the hospital - good for talking about ourselves to a sympathetic ear, and speaking to each other through a third party.

I had been particularly anxious about my CA 125 results from Monday's blood test, which had not been available on chemo day. We tracked down Dr. M at the hospital this morning, and got some very encouraging results - down to 486 since the beginning of chemo 2 (1,237)!! Talk about walking on air - the relief was such a rush.

Eric has had a sore throat for the past couple of days and has been so good about wearing a face mask and washing his hands - but it is frustrating not to be able to get a good hug from him. I find it a nice change to be worrying about someone else's health for a change.

I can feel the bad weekend on its way - battle is beginning in my insides and I have started the pain killers. Good to know that I will begin feeling better again by Monday, but as long as the CA 125 continues to drop, I am a happy camper!

True Blood

Yesterday was blood day at Princess Margaret Hospital. I had a later than usual appointment, and the waiting room was overflowing with people. The lady who finally drew my blood was talented, finding a vein at first try, but she said that I would have a large bruise. Waiting to see my oncologist afterwards, we saw that there was a large backlog there too, and it was an hour or so before we were called in. Dr M was not available, so we saw Dr D instead, who gave me a thumbs-up for chemo 3 on Wednesday.

I found out about CA 125, a marker in the blood for some ovarian or peritoneal cancers. Mine has come down from a serious 1,989 on March 2, before I began chemo, to a still serious 1,237 after that chemo on March 29. The results from chemo 2 were not ready yet, but I have to stay positive that it is still coming down - normal is anything below 35! Before leaving the hospital, we went up to Chemo Daycare to visit with the mother of Eric's friend who has the same symptoms and diagnosis as I, but who is one chemo behind me in treatment. It is good to speak with someone who is going through the same wringer as I. She still has her hair, and she is amazingly still working!

Today is another gorgeous day. My sore throat is gone, so on today's list is walk to Queen Street for coffee with some old friends, paint some more garage, give myself a pedicure, mess around in the garden, and a shopping run to Costco.

You give me fever

I was disappointed this morning to wake up with sore throat still there, and with lower energy than yesterday. My planned walk to the beach didn't happen, and I spent most of the day obsessing about my throat between visits from friends expecting to find me more active. I called the hospital to find out what medications I could take (why do these things always happen after Friday, 5:00 pm?), and the on-duty doctor told me that even vitamin C or zinc is off limits during chemo!! She also told me to go for blood work on Monday, no matter how I feel. I hope that I don't have to postpone either chemo on Wednesday or the CT scan at the end of the month.

This afternoon I tried to force a fake fever by soaking in a very hot bath - got my temp up to 38.5 for about half an hour and hope that I killed off some germs in the process. Tonight, I am running a slight fever - 37.1 (my normal is 36.1) and am drinking a garlic, ginger, lemon and honey concoction that Eric has made me - the throat feels better, but I could drop a fly at ten paces with my garlic breath.

What a difference a (sunny) day makes

This has been an excellent week! Day 12 - 16 have been fantastic in terms of energy level and focus, and days 17 - 21 are bound to be wonderful too. I seem to have bounced back from chemo at the same rate as before, but I feel capable of sustained exercise, though I do poop out a bit in the evenings. I have been painting the garage for the past 4 days - up and down a low ladder for up to four hours at a time. The weather has been warm and sunny, and that must work to my advantage, and I am getting long nights of sleep (thanks to the pills...).

Life is taking on a more normal pace. I have been seeing more people, shopping more, cooking more. and sleeping more. I finally bought glasses with my contact lens strength (contacts are off limits because of the risk of infection), so that I am seeing clearly when I walk around now - this makes a huge difference in my ability to function and focus on tasks. I have also noticed that my craving for meat and proteins has subsided a bit, and I now need more salad and vegetables in my diet. I hope that this is a good sign - I'm still not back to being a part-time vegetarian, but am sure that this is a healthier diet for me.

Last night I developed a sore throat halfway through watching a good movie (An Education). The throat is a little better this morning (good sign that my white cells are working), and there has been no fever so far. I am gargling with salt water every so often, and hope that this will take care of the problem.

There is rain in the forecast for this weekend, so I may have to put the painting on hold, but I hope to get some flower seeds in the ground this afternoon.

Spring is in the air

The sunshine returned today, but it is still brisk outside. We drove Miriam and Viva to Scarborough to catch their bus back to Montreal this morning, and then walked around the neighborhood in the afternoon, visiting an open house, and were amazed at how expensive houses are right now - we are sitting on a fortune, it seems. Our fortune needs a new paint job, and I am agonizing over paint chips. We tried out some sample paint that we bought a few days ago, and it seems to be completely different from what we were expecting. I need some more input from family and friends before I'll be ready to take the plunge and invest in gallons of the stuff.

Gave myself a manicure yesterday - professional ones are out during chemo because of the danger of infection. I wouldn't pay for a manicure, but I do like going out for a pedicure during sandal weather. I have had a low-grade shooting pain near my right ear for a few days - think that it is coming from my gum, but there is no swelling - just tenderness. I'll be on the lookout for fever over the next few days, which would indicate infection. Hopefully this will just go away by itself.

Day 11 feels very good, and I have been busy and active all day long and still not feeling tired. Perhaps my five nights of good sleep have something to do with this. Yesterday I saw a psychiatrist at PMH because Dr M is concerned with my taking the sleeping pills and thought that I needed some alternative coping strategies. I left the appointment with a new prescription for pills and confirmation that my insomnia is drug induced and that these pills are not particularly dangerous. Vindication feels sweet, but I don't like thinking that my doctor is the enemy! And I am looking forward to another week of deep sleep zzzzzzzzzzz.

Buff and muffins

Day 8 and I am definitely feeling better. I've now had two solid nights of sleep (helped along with pills...), and am more alert and active. JP and I shopped a bit yesterday for paint samples to try out colors for the outside of the house - in desperate need of a lift. Also looking for a special Canadian mustard, we discovered the Distillery District, a new shopping space created out of the old brewing warehouses east of downtown near the waterfront. We'd heard lots about it, but never been there - it's a bit off the beaten path. We'll be back to investigate more when the weather is better and I am in week three and feeling great.

I am getting Flat Anne's photos together and will try to get her into the post, back to Minneapolis, tomorrow. It has been fun showing her around Toronto, but she is missing her second grade class, and is anxious to get back to work with regular Anne.

My buff arrived in the post yesterday (thanks for the tip Mirta), and now I have a really comfortable head covering that is easy to throw on, and even pop a hat over for going out. Miriam cut what is left of my hair to a very short buzz, and I don't leave so much fallout in the shower now.

The kitchen is warm and full of wonderful smells - JP and Viva are cooking tonight. I made a big recipe of muffin mix, and we just fire up the oven when we feel like having some fresh baked goods.

With the weather wet and rainy, we have all stayed inside, and I took the day to catch up on some work for Nordic College. I have to be careful not to overdo when I feel good in the morning, because I pay for it in the evening. This will be another early night for me, and hopefully another good night's sleep.

I'm so tired, my mind is on the blink

Everything feels worse when one is sleep deprived, and this is where I am right now. Day 5 of chemo was the low point for me in this cycle, but day 6 is not feeling much better. My insides are making battle with themselves - don't know who is winning, but there is a lot of action going on. I just cannot find any refreshing sleep - even the sleeping pills don't seem to be able to knock me out, so I have stopped taking them and am hoping that fatigue will kick start a more regular sleep pattern. Right now I seem to be sliding into an hour or so of very light sleep at intervals during the night, and that is just not good enough. Not sleeping also means that my metabolism doesn't slow down, so I am ravenous overnight, and that works to keep me awake.

The sun is shining, and it may be our last beautiful day for this week - thunderstorms and cooling trends are on the way, so I will try to get out for a short walk at some point today. I am looking forward to week 2!

Chemo 2 and primate look alike

Yes, I do actually look forward to my chemos! I know that this will be the day when I am feeling the strongest, the most energetic, and safe because my cancer is getting another blast. Wednesday was no exception - Eric, my brother Rick and JP took turns playing Quiddler with me, chatting, watching me sleep through the Benadryl drip, and helping me multiple times get to the washroom with my drip station in tow. We went out for a snack afterwards, and then spent 2 hours showing Rick around the beautiful AGO (Art Gallery of Ontario).

Miriam and Viva met us at PMH on Thursday for the "Look Good, Feel Better" clinic, Mim going with me, and the others sightseeing in Kensington Market. I got a huge box of makeup donated by big companies, many goodies that I will probably not be using (lucky Miriam), and thoroughly enjoyed the pampering session - I highly recommend that any woman going through chemo sign up for a similar session.

Back home again, and Miriam gave me a very short scissor cut because my hair was seriously coming out, and each hair felt like a splinter in my scalp. She left some longish hair in front to peek out of my head coverings, but when I took a shower, the amount of hair that came out was truly frightening - a veritable rug of hair collected over the drain. My family has been very supportive, telling me that I look cute, and making comparisons to the Jean Seberg look in "A Bout de Souffle" (but she had thick hair, about twice as long as mine, and was blond) - I know that they are being nice, and probably truly believe that I am cute, but personally I think that I look more like a baby orangutan. I will save you all from that photo!

So now to the down side of chemo - the wonderful steroids that make me feel energetic and comfortable also don't let me sleep. Two hours only last night from 6 - 8 am. Tonight, after my last steroid, I will take the dreaded sleeping pill and try to catch up. Then it will be all downhill for another few days. And then I will feel better and better till my next chemo - YAY!!

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!