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.