Thalidomide

http://www.amazon.com/Goodbye-Keanu-multiple-myeloma-ebook/dp/B00CB87K8Y 

Thalidomide was developed in the 1950s and marketed as a mild sedative. It reduced morning sickness so it became popular with pregnant women. Then it was discovered the drug caused babies to be born with malformed limbs and consequently it was banned in 1961. But it didn’t completely go away. In the 1990s studies indicated that thalidomide might inhibit the growth and survival of myeloma cells. The combination of thalidomide and dexamethasone is now a common regime for patients with newly diagnosed multiple myeloma. To be eligible to receive thalidomide, I had to sign a form indicating I could not get pregnant, nor would I give the drug to someone who could potentially get pregnant. Because of the high incidence of blood clots associated with thalidomide, I was also prescribed 100mg of aspirin daily.

      I found a list of thirty-four side effects of thalidomide and those are only the ones that affect the nervous system. There are also side effects to the hematologic, immunologic, dermatologic, metabolic, gastrointestinal systems and more. But the one that affected me the most, as usual, was constipation. It was worse than ever. So I was back to carrying a bowling ball in my stomach most of the time. At the end of my first cycle on thalidomide I was so constipated I looked pregnant. No, I looked more than pregnant I looked like octo-mom. For the first time ever in my life, when I put a shirt on, the material pulled hard away from the buttons as it stretched around my waist, like trying to put clothes on a pumpkin. It made me feel sick and tired and ugly. I was prescribed three different types of laxatives but in spite of trying them separately and all together, doubling the dose and increasing my exercise, I still got no relief. In five days I would be lucky to pass anything more than the size of a peanut. I added some over the counter dulcolax and a liquid enema without much relief. So I turned to colonic hydrotherapy. In this therapy a tube injects water into the colon through the rectum. I took four sessions from mid-November to mid-December. It is not something I ever thought I would do and it is not something one speaks about at dinner. The therapist who helped me with my “session” said when she explained what her job was to others their first reaction was “euw”. It was that sort of thing. But it helped. So except for ironically looking pregnant all the time and having to wear stretchy pants, I was fine. I mean I couldn’t complain really considering the alternative.

Goodbye Dr Doom

http://www.amazon.com/Goodbye-Keanu-multiple-myeloma-ebook/dp/B00CB87K8Y

On October 10^th I was put back on four cycles of drug therapy. This was to consolidate my treatment and hopefully get rid of any last remaining cancer cells. It would include four cycles of velcade which I was still entitled to with a government subsidy, having only used five cycles before my stem cell transplant. Along with the weekly shots of velcade I would take antibiotics, a daily dose of thalidomide, and the steroid dexamethasone once a week.

          On October 29^th I had hopefully my last appointment with Dr Doom. I was dreading it the night before and wouldn’t let Alex even discuss it. I was sure she wouldn’t be able to say anything positive. I had just had my first post-transplant blood test to check the protein level in my blood. This would indicate if there was any cancer left. To my surprise the doctor was more jovial than I expected. She was actually smiling. But she told me there was a trace of the cancer left. My urine showed light chains (an identifiable protein and an indication of multiple myeloma) was in the urine. She termed my result a “very good partial remission”. I didn’t like the “very good” or “partial” parts of the sentence. I always thought the words “very good” were a bit coddling. I was disappointed. I wanted a 100% on my report card. I wanted the cancer to be undetectable. Instead after nearly a year of taking drugs and going through the transplant, the little buggers were still simmering. My face must have fallen because she immediately said it didn’t mean much. She said people who had a complete remission (translated to excellent full remission rather than very good partial remission) after their transplant, didn’t fare better in the long run. 

She said she was glad I was getting four more cycles of velcade and thalidomide and that the drugs would hopefully beat the rest of the cancer. I couldn’t understand how four more months of therapy would change anything after all I had been through. But this meeting became about options and that is what really gave me some hope. She said she had a drug trial going and there were others. She even said “by the time” I needed the new drugs they would probably already be mainstreamed. I knew an allogeneic transplant was not off the cards either as my sister had been proven to be a match. So even after four months there would still be choices to make to continue my fight. Choices are everything. As long as there are choices there is light. Then, because she couldn’t help herself, she said something outrageous. It started with an apology for never visiting me in hospital.

      “I’m sorry I never got to see you. You were out too quickly.”

      “Yes, I was only in two weeks.”

      “I was dealing with people who were (laughs) falling apart (laughs). You were doing fine.”

I immediately thought of those people “falling apart”. I didn’t think it was funny. Those are people whose lives were being ruined. Maybe I’m being melodramatic but I was pretty horrified by her manner. Then again, I guess you have to be the type of person who can spend your day with those “falling apart” and still sleep soundly at night. Of course it takes all types. But I was glad to be out of there and hoped to never be back.

 

Homage

http://www.amazon.com/Goodbye-Keanu-multiple-myeloma-ebook/dp/B00CB87K8Y

Whether you are religious or not, it would be infinitely more satisfactory to die having served some sort of higher purpose. Heart surgeons and research scientists, teachers and iPhone engineers, can all utter in their final breath: “It’s okay; at least I didn’t waste my life.” That must be such a relief! But some people don’t have a chance to reflect on the journey their life took. On September 28^th, a small plane crashed in Nepal which killed nineteen passengers. It crashed two minutes after take-off. Residents of the town where it crashed said they heard passengers screaming and saw them waving their arms as it nosedived. I have only seen the names of the seven British men who died and I want to remember them here: Raymond Eagle, 58, Christopher Davey, 51, Vincent Kelly, 50, Darren Kelly, 45, Timothy Oakes, 57, Stephen Holding, 60, and Benjamin Ogden, 27. I give them my respect. They did not expect to die. Now if they had all been base-jumping or rowing across the Pacific well…

      Since then there have been massacres, murders and accidents. There have been too many deaths to count. The BIG GIANT FOOT has been busy as usual. Unlike the death of the famous, only a handful will lament my passing. I didn’t get around to doing anything great. So it is better that I go instead of the heart surgeon, the research scientist or even George Clooney.

      But I am still here. My September doctor’s appointment went well. My blood results were good. I was set to start more velcade, steroids and thalidomide as a last powerful hit to my body to show it who was boss. I sleep well and am only reminded of my disease once or twice each day.

I don’t know how much longer I have here on earth. I don’t know how much longer my voice will be heard by those I love. I don’t know if anyone will care that I was here at all. But if you have a notebook and you hear of my death, write my name down. It will make me feel special.

Lonely Planet Guide to the Other Side

http://www.amazon.com/Goodbye-Keanu-multiple-myeloma-ebook/dp/B00CB87K8Y

I thought about people who committed suicide. If only they waited, they might have woken up the next morning feeling so much better. I never saw how far down in the pits I was until I looked back on myself from a distance. It took months to realize I was fighting a disease that occupied my mind as well as my body. But first I had to believe my life was worth battling for.

       But in the end it doesn’t matter how hard we fight. When it’s our time, it’s our time. Since I discovered the secret to the universe, that the BIG GIANT FOOT determines our fate, I am calmer about my approaching demise. I will face it with grace and aplomb.

Of course that’s bullshit. I am already panicking. Being incurably ill is like going on a voyage to another world. You don’t know what you’re going to encounter so you can never really be prepared. You have no idea what to pack. You can only wear clean underwear every day and hope for the best. The unknown is a scary thing. But it has never made me think religion is the answer. Instead of a bible I want a Lonely Planet Guide to the Other Side.