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.