Searching for balance

It's been an interesting week: the second week of my first full chemo cycle. Perhaps my main concern has been to establish a routine. I need structure in my life, but I don't want it to become obsessive. This was the week I was trying to establish balance. Not sure it worked.

The stumbling block has been the fact that my reaction to the various poisons varies, so even if I expect to feel a certain way at a certain time of the day, it may never happen. Conversely, if I expect to be a vegetable for the whole day, that will never happen either. For example:

This morning I woke up after a very fitful night of incredibly vivid dreams about losing things or getting lost. (I know, must be some deep psychological meaning there...) After my morning shower my head was perfectly clear and I did my BrainHQ exercises to keep it that way. Following that, I did some Qigong exercises and finished by mapping out some stories I am planning to write. Then, it was time to take the cyclophosphamide pills. Another BC situation. (Remember, previously I said that in my new state BC means 'Before Cancer'? Well, here's another definition: BC = Before Cyclophosphamide.)

Within a few minutes I felt that my face became drawn and there was pressure on both sides of my head. The fog was descending. Or was it?  Actually it lifted fairly soon and only some four hours later did I finally hit the bed and fall asleep for a few hours, after which I felt wrung out for another few hours. It is now around 8pm two days after I began to write this blog entry and I am still not sure that I will be able to finish it. My mind keeps jumping onto other things.

In any case....

Getting back to the week and finding balance....

One of my great discoveries was the therapeutic effect of music to find balance. On Tuesday, the day of my IV chemo was long. I got a ride to the hospital and back by a volunteer driver, but for various reasons she picked me up almost two hours before my 10am appointment. I got home about 2pm. What to do when you are high on steroids and low on chemo poisons?

Physical activity is always helpful to settle a restless mind. But what if the body is tired? Do something mindless that is not physically demanding.  I decided to back up my CDs onto an external hard drive. OK, but then why not just listen to the CD and forget about everything else? That's exactly what I did when I came to copying my wonderful version of Mozart's Don Giovanni.  I settled on my couch and listened to the whole opera cover-to-cover, with Libretto in hand. I happen to have a special fondness for this Opera and listening to it brought back wonderful memories of my childhood in Budapest and teens in London. A perfect way to find balance!

Another day I went for a walk and later did some weeding in the garden. Now, that's really therapeutic.

So, overall, while I think I did and do a valiant effort, I don't think true balance is possible during chemotherapy. I am going to return to taking things one day at a time, not worrying about becoming obsessive, and, hoping against hope, that the 'fog' will lift this time at the end of the treatment and not shroud me for years as it did before.

Finally! A full chemo cycle.

This morning I woke up fresh, bright eyed and bushy tailed. Full of energy, I put on some African music and danced my heart out. This was around 9am, just before I was to take my cyclophosphamide pills which, I knew, would change everything.

After four weeks of ups and downs, on Tuesday I was finally able to start a full 3 week CMF chemo cycle. This consists of an intravenous 'bolus' of methotrexate and 5FU first week, intravenous 'bolus' of 5FU the second week and 14 days of 100mg cyclphosphamide in pill form. The third week is a period of rest free from medication. The week after that, it's all repeated. I am told I will have a total of four cycles, and this is my third, so I expect to be finished sometime mid-August.

In the meantime...

I have to cope with...

Soon after I took the chemo pills at 9:45am, my mood changed completely. My lips started tingling, my stomach constricting. My mind was getting foggy and tears poured down my face. Not a happy chappy.  I took notes, because I knew the mood would lift and I would forget the details. So, here it is:

' Just a half hour ago I wrote a note to ... (a friend) to say that I'll live a long time. Now, I have no thought of the 'after'. Just want to cope with the present and get it over with. Half hour ago I was full of hope. Now, I just am. There's no past or future, just the now, and the strange sensations coursing through my body and the coldness of my tears. I can explain it all as a physical reaction to the medication, but emotionally all I can do is scream: THIS IS A NIGHTMARE.'

This is the point where my 'coping mechanism' kicks in and I look for things to do to distract myself from my distress. I think I mentioned somewhere in this blog that I moved house in February, when I was really ill. It's just  a very small, one bedroom garden apartment, where I plan to eventually have a vegetable garden, but I am still unpacking and slowly making the place habitable – with lots of help from amazing friends. So, I've taken to sorting out small things that make life more pleasant. Yesterday I sorted out my CDs and thereby liberated two large stackable drawers that will now be used to help organise my bedroom closet. Today I plan to start copying the CDs to an external hard drive.

'OK, so the tears are gone, but now, instead of the 'lightness of being' and energy, I feel like my body is imploding, like someone is sitting on my chest, my bum glued to the sofa. It's difficult to even make the decision to move. My vision is blurring slightly. I am putting drops in my eyes to stop them burning. My throat is starting to get sore. One bright thought – these symptoms will disappear by evening, only to start again tomorrow after I take the next cyclophosphamide dose.'

It's 11:30am as I write this blog and I am starting to feel better. The sun is shining outside in my garden and I am expecting a friend to visit, so we can go for a walk. It's very important to keep walking and exercising during this period. I am not always able to do it.  The fatigue I mentioned above comes and goes during the day. I never know when it will hit. Yesterday, I walked to my local cafe with friends (two blocks). When we were ready to leave I could hardly walk and they had to bring the car to take me home. And so it goes...

R.I.P

It's been a long wait, but we are resuming chemo on Tuesday this week.  In the meantime I learned a big lesson about how to deal with the loss of friends made in hospital without losing hope for myself.

 This is a picture of me and Martha Psarakis (left) taken in April, on the day we were both leaving hospital to go home. She was brought back from the brink of death the week before I got to the ward. With her family at her side, we became instant friends and vowed to stay in touch.  Martha died two weeks ago. Her son called me with the news. I told you about our accidental meeting at the hospital in May, when we both needed emergency draining. That was the last time I saw Martha. We talked one the phone, but I couldn't go to visit, because I wasn't feeling well and she lived too far away. I was upset when heard the news, but I was expecting it and I can't say that I was overwhelmed with grief.

The second 'hospital friend' I made in May was Marie Searson. She was 81 years old. A very forceful personality with a fascinating mind. We clicked instantly and when we were not too much in pain or sleeping, we were chatting all the time. We never ran out of things to say, either with her or her family and, after two weeks, when I went home, we vowed to stay in touch. She was also terminally ill, but was still well enough to go home. I arranged with her son Michael to go and visit about a week-and-a-half ago. A few days before my visit Michael called that Marie has been moved to a hospice for palliative care and was fading fast. I was devastated. I was really looking forward to my visit. I didn't think she would go that fast.

Every time I thought about Marie, I cried. Why? I was very confused about my feelings. After all, I knew she was terminal. I also realised that it was not just grief, but also fear for myself. But my situation is not terminal, so why I am crying? I went to see my wonderful cancer counselor, Angela.

Angela said that during this cancer journey one can form deep friendships in a very short time. This, she explained, was because we are going through similar journeys and understand each other. 'I may be your counselor', she told me, 'but I don't really understand what you are going through as I have never had cancer.'

Her candour surprised me, but then I reflected that she is probably right. When I was in the hospital, one of the young interns, insisted on discharging me before I was ready. When I objected, she said: 'I understand how you feel'. 'No, you have no idea!' I screamed at her, and listed a litany of reasons why I could not be discharged that day. I completely lost my cool. Later, when we discussed the incident among ourselves on the ward, I told the other women: 'How could she know how I feel, when I don't even know how any of you feel. I am not going through the same stages as you are.' So. I understood where Angela was coming from.

Today I heard that Marie died last Friday. May she and Martha rest in peace. I am so glad I have met them and even if just for a short time, we had some fun times to share. It may sound strange, but it was fun to laugh together at our various health problems and about life's foibles.

I am sad that I had such a short time to get to know my new pals, but the fear is gone. My situation is different. My ascites is almost completely gone after two incomplete chemo cycles and the prognosis is that I would go into remission after treatment. Whether it will come back again is another matter. Nobody can tell. And that's good enough for me for now. I feel much better and am ready for the next chemo cycle, which, as I said, is scheduled for Tuesday - two days from now.