Wondering what to make of life before the Necessary End

The last time I wrote here, four months ago, I was 36 hours away from doing my third cycle of Carboplatin.

Life has changed a bit since then, and not much of it has been good news.

1. 25 January 2011: Yes, I can go on my holiday

   My gynaecological oncologist says that yes, I can go on my grand holiday at the end of February. A friend is going to come with me, and he came along to talk to the doctor. I had to pay for the airfares by 26 January, so I did that when I got home from the hospital. Great news!

2. 25 January: Hip and back pain

   Through late December and January I was getting pain in my hips and back. Not every day. I was told it was probably joint pain. That didn’t make the pain go away.

3. 27 January 2011: Allergic reaction to carboplatin

   I went for the third cycle of Carbo. After the usual anti-nausea, anti-vomiting drugs, the nurse started the carboplatin infusion. About 10 minutes later I kind of, err umm, felt kind of, um, strange. Not bad, not ill, just odd. I decided I’d get up, so I put down the foot stool on the big chemo chair. I was just about to stand up when the palm of my left hand started itching. I was scratching it a little when two nurses appeared before me. I hadn’t even looked up, and this was only seconds after I began to feel odd. Nurse 1 asked if my palm was itchy. Even as she asked, the other palm started getting itchy. Nurse 2 was turning off the carbo. I couldn’t decide if I was going to throw up, feel OK, faint, or what was happening. Another minute later, I was leaning forward, belabouring every breath. I could still breathe, but it wasn’t straight-forward.

   Then it seemed like all hell broke loose.

   Nurses and doctors came from everywhere.

   One nurse went off to get a bed. Another nurse wrapped my arm in one of those blood pressure things that automatically measures blood pressure every so many minutes. A third nurse came brandishing an oxygen mask, but I still thought I might throw up, and couldn’t cope with the idea of a mask over my face. So she just stood there and held it near my face until I got use my right arm back from the blood pressure nurse and could hold the mask myself. Another nurse had an oximeter and stuck it on a finger. My left arm was still hooked up to the IV, but by now the carbo had been turned off and some kind of antihistamine was dripping into me.

   I moved on to the bed. A few minutes later there was great consternation about oxygen levels. Someone was told to go and get nail polish remover, but I’d read enough to know that polish doesn’t affect oximeter readings, but that my acrylic nails may. So I told them I had acrylic nails. A nurse ripped off my shoe and sock and put the oximeter on a toe. After a few minutes they seemed to be satisfied with the oxygen levels.

   I realized I was having an allergic reaction to the drug, though no-one actually said that. What was strange was that while all of this was going on, I felt quite removed from it all. Not worried. Not panicked. It was as though there was a scrim, or a light mist, or some peculiar distance between me and the doctors and nurses. I could hear them, I knew who was there, I could respond when they asked me to do things. I knew that nail polish remover wasn’t going to solve the oxygen problem, and told them about the acrylics. But through all this I was kind of fazed out, not-quite-all-there. Very peculiar.

   After a while (half an hour maybe? it was hard to tell) I kind of ‘came round’ and could think and talk ordinarily. The main nurse said that I just had to sleep off the drugs they’d given me, so I rolled over and went to sleep for 2 or 3 hours. When I woke up, there was some concern about whether I was OK to drive home, but I went for a bit of a walk, got something to eat, and then checked back in with the nurse. Yes, she said, you’ll be OK to drive.

   It was a very weird day.

4. 28 January 2011: No more carboplatin.

   Back to the hospital to meet the medical oncologist.

   No more carboplatin.

   This was a big blow, because it is the main drug used for ovarian cancer. In some cases, they can try to de-sensitize you to the drug by taking all day to give increasingly stronger doses. But I was told that, given the severity of my reaction, it was unlikely that I’d get through another dose.

   So what’s the plan now? Cyclophosphamide. It’s not administered through an IV. It’s a DIY drug, three little pills every morning for two weeks, then two weeks off. What could be easier?

5. Late January/early February: Cyclophosphamide

   Cyclo turned out to be almost as vile as carboplatin. I have never been so weary and tired and fatigued and exhausted. I spent days and days bored and frustrated lying in bed. One day I got up and decided to send one email. I only had to type one sentence. I got half way through the sentence and thought ‘I have to go back to bed now’.

   But I’m going on overseas at the end of February. I have a session to give at a conference and then 4 weeks of travel. How can I possibly do it in this state? I just didn’t know.

6. Late February: Off overseas, bearing cytotoxic drugs

   Cyclo is two weeks on; two weeks off. I was due to start my second cycle the day before I left for overseas.

   The doctors and nurses were very helpful in accommodating my trip. I started the second cyclo cycle a day early, hoping that the worst of the effects would be over by the day I had to give my conference session. I got lots of helpful advice and what seemed like a small pharmacy to take away with me—along with a letter to anyone who cared saying that I was holding these drugs legitimately.

7. Late February/March: Overseas

   This was to be the last grand trip. And it was very, very grand. We flew first class. Stayed at the very bestest hotels. And had a wonderful time. Travel seems to produce sufficient adrenalin that I didn’t suffer from the cyclo as much as I had the first time round. And, we’d reduced the dose a bit, which may have helped, too.

   But… the pain in my hips and back got worse and worse. It started about 4 or 5 days after leaving home, and continued for the rest of the trip. One day we left the hotel expecting to go exploring the city. I felt like I could barely walk. We made it to the first corner where there was a cafe, and I suggested we stop for a break, after all of maybe 100m!

   I’m glad I did the trip. I don’t care that it cost a fortune.

8. Late March: Welcome home!

   I was away for nearly 5 weeks. Ideally, I should have started the next cyclophosphamide cycle a few days before I got home.

   So I had agreed that, since my flight got in at 7am, I’d go to the hospital first thing for a blood test, then go back later in the day when the results were available to see the medical oncologist.

   Not a fun day to look forward to as your welcome home from a long trip.

The last two months have not been good.

1. Late March/early April: Cyclophosphamide cycle 3

   The day I got home from overseas, I had a blood test and later saw the medical oncologist.

   The CA-125 level was up again. It had been 1980 in early December. 2044 on 11 January. It was now 2221.

   So I started my third cycle of cyclophosphamide. And was sent off for various scans and tests.

   I was not well for the first couple of weeks that I was home. I had no energy at all to do anything. I put off having the CT scan and bone scan till the very last minute. Even then, I cancelled the first appointment for each, and re-scheduled because I just didn’t have the energy to get out of the house.

   The hot flushes, that had been bad while I was travelling, continued to be difficult to deal with. Even though winter was setting in, I was sleeping under an electric fan every night and struggling to cope during the day.

2. 12 April: Results of CT scan, bone scan, blood tests

   By the time of my next visit to the medical oncologist:

   1. The CA-125 level was up yet again. That was very disappointing. It had been 9 back when I’d finished the first line of carboplatin last year. Now it was skyrocketing into stratospheric numbers.
   2. The bone scan showed that no tumours had invaded the bones (which is good!). That means that there’s no way of knowing what is causing the pain in my hips and back. Maybe it’s just arthritis, I’m told.
   3. The CT scan showed that the tumours are coming along nicely. From the radiologist’s report:
      

      “Multiple mildly enlarged lymph nodes [around the trachea]… a large mass of retroperitoneal lymph nodes surrounding the aorta, which measures about 11cm x 8cm x 4cm … moderately enlarged retrocrural nodes” [and] “left iliac lymphadenopathy”.

      So the tumours have grown significantly since the last CT scan in December. 11cm x 8cm x 4cm is kind of grapefruit size. Not good news.

   But… the medical oncologist points out that (a) the CA-125 level has only gone up by 10% since December and (b) no tumours have yet reached any of the major organs: lungs, liver and bones are clear.

   So, I stop cyclophosphamide. And, I stop the taxoxifen I’ve been taking since I first got sick. And we’re going to move to letrozole. The move from tamoxifen to letrozole was always on the cards. They are mainly addressing the breast cancers which in any case have become a second-order problem. The doc says that, because my ovarian cancer is also estrogen-receptor positive, letrozole will help it, too. So the deal is: start letrozole and come back in 5 or 6 weeks.

   4. May 2011: Folorn hope

      I didn’t need another CT scan to tell me that strange things were going on in my abdomen. I was getting various kinds of pain: not severe, but enough to prevent me from sleeping. It’s insistent. It grinds away continuously for days. The pain itself is not bad, but it saps the spirit. Fortunately, paracetamol solves it. Paracetamol does not, however, take away the hip and back pain. It reduces it a bit, but not much.

   5. 24 May 2011: Now what?

      After 6 weeks on letrozole, I was hoping that the CA-125 might have come down. But it was just hope.

      I wasn’t really surprised to find the CA-125 had gone up. But I wasn’t expecting it to be over 3,000. It had gone up nearly 50% in 6 weeks.

      The conclusion now is:

      • I can’t have carboplatin again because of the allergic reaction.
      • The tumours progressed under cyclophosphamide, so we won’t do that again, either.
      • The letrozole may or may not be helping the breast cancers, but it sure didn’t do any good to the ovarian cancer.
      • Therefore, we’re running out of options.

      I’m given three options, and a week to decide:

      • Caelyx, aka Doxil, aka Pegylated liposomal doxorubicin
      • A Stage II trial involving Topotecan plus an experimental drug
      • A Stage II trial involving Taxol plus an experimental drug

      That’s a bit like choosing between having your finger nails pulled out, having your legs broken with an iron bar, and having your heart removed with a rusty cheese knife.

      I have till Tuesday 9am to decide.