Square One, The Return

After four cycles of my immunotherapy trial, my scan results showed that the disease is no longer stable, but is progressing. Dr. D immediately took me out of the trial and we decided to meet again in two weeks so that she could propose another treatment solution.

In the meantime, I headed to Bovenant for Alec’s birthday – 38, is that possible? – then on to the New Forest in Hampshire, England with Virginie and Jasmine for a fun-filled, action-packed vacation “entre filles”.  Jasmine has only recently begun speaking English so we wanted to give her a bit of an immersion at the same time that we gave ourselves a nice holiday.  She was really impressed with our trips on the ferry and the fact that we could go to the cinema and watch Moana on the boat !  We met up with Jeni and Wendy and their new puppy, Willow. The highlight of our trip was to Peppa Pig World, a theme amusement park for little kids.  She has been watching Peppa Pig animation as part of her English home-schooling and was totally enchanted when she got to meet Peppa and George in person.  By the time we got back to Brittany, she was literally singing the blues with her own improv rendition of  “I gone away from you”.

Once back in Brussels, we met with Dr. D who essentially proposed the same chemo combo that I had originally started with (taxol + carboplatine) in one of three different treatment protocols.  For the first time, I felt that we had reached the end of the line as far as treatment choices were concerned. I was so tense during this meeting and had been since I’d gotten back, that my neck and shoulder muscles felt like steel cables.  This was not helping the overall situation.

We reached out to our good friend in the states Dr. G who offered to put me in a trial over there based on sequencing the tumor tissue for known mutations and then matching any finds against a database of molecules known to react with those mutations.  Mr. T started looking for flights; I was in contact with the study nurses in Boston and here in Brussels getting all the information ready to transfer over.  It was a bit frantic and felt somewhat like grasping for straws but I just couldn’t accept the fact that taxol+carboplatine would be my only option.  And I really didn’t want to go bald again.

I had a cystoscopy on the following Friday and I finally got to meet my cancer face to face. There they were: two swollen red knobs against the healthy, creamy-pink lining of the bladder.  The verdict was in now.  There would be no trip to the states since we would have to move fast now.  I’d never had any organ invaded as yet and since these lesions were very small they had to go.  I began looking at turbans online.

That week I went into a tailspin feeling a bit hopeless and tired of the whole affair.  One of the hardest things that I struggle with is not so much the “fear of dying” part which does enter the picture when I sink too low, it’s dealing with my emotions. I can go from being quite resigned in the worst sense of the word to panic in the course of a few minutes.   I tend to fold in on myself, flee contact from others, stay in bed, sleep a lot.  I feel that I’m letting my friends and my family down by not being “on top of my game”.  But I’ve realized that I have to fall below the flotation line before I can muster up whatever it takes to get back on board.

When we next met with Dr. D we looked at the images from the cystoscopy and she explained that this meant there was only one way ahead:  taxol+carboplatine once a week for three weeks, and then one week off.  So I now had my program and I knew where we were heading and what the effects might be and I felt incredibly relieved and light-hearted.  I was ready to go.  There was a clear plan.

I made an appointment with my hairdresser to get my hair cut as short as possible (that will be tomorrow) as a way to take action in order to feel as if I still had some control over my body and its destiny.

We showed up for my first chemo last Friday (3/3) and as the nurse was explaining the side effects of the drug, I asked her if the cold caps were efficient against hair loss.  A cold cap is a frozen ice pack that is placed on your head and tightly bound in place during the course of the chemo drip.  (For me that would mean about two and one-half hours.) It causes the blood vessels in the scalp to constrict thus restricting the amount of chemo that reaches the base of the hair follicles.  She told me that it could be between 60 and 70% effective, so I said bring it on.  It was quite uncomfortable for about 15 minutes and she warned me about this but then reassured me that the discomfort would wane after that.  So I tried it and we now have to wait and see.  

Doing whatever it takes.

I keep talking about this royal “we” when in fact I mean Mr. T and me.  He has been steadfast and constant and encouraging even though I suspect he has his own well-hidden turmoil going on inside.  He invited our good friends, Nicholas and Véronique over for supper and I was so angry since I really didn’t feel up to it.  But he promised to help in the kitchen, cleaning the house up before they came, preparing the apéro, setting the table, serving the meal, clearing away afterwards.  It was a great evening and I was so grateful for his initiative.  I also realized that with your true friends you don’t have to be “up to it” all of the time;  they take you as you come and what better sign of friendship could you hope for?