Thursday, August 1, 2013

Those tingling fingers

A couple of weeks ago I was tapping on my iPad as usual and for some reason the letters got all jumbled up.  I should say, they seemed more jumbled up than usual. I am a touch typist and I don't usually make too many mistakes.  This time I did and it was very strange.  I took a good look at my fingers and realised that there was something wrong with the tip of every one of them.  They were tingling and when I touched something, it felt different from what I expected. There was a dullness to the touch.

Neuropathy!

I was horrified.  Isn't it enough that I have neuropathy in my feet from the chemo seven years ago, now I have it in my fingers as well?  At first I felt very sorry for myself, but then I started to wonder what could give me this new unwelcome surprise? Well, there were only a few culprits - methotrexate, 5FU, cyclophosphamide or the exemestane.

I immediately ruled out the exemestane, but then told myself: 'hang on, let's take a look at the possible side effects.' So, I did. Well, that doesn't seem to be a side effect, but vision problems are. Aha! That's another problem that's crept up on me. Lately, my glasses have been bothering me. I have trouble focusing when I work on the computer. It all looks fuzzy. When I told the professor, he asked if I saw double. No, I said, it's more like an angle split than double. Weird. I thought it was the frame that was getting out of shape and went to the optometrist twice already.  She suggested I get a cheap reading glass from the chemist to use for working on the computer.  Well, it's better, but I think I better have the eyes examined properly.

OK, back to neuropathy.

I just found an article about this condition and learned that it's called 'chemotherapy induced peripheral neuropathy, or CIPN. Unfortunately it doesn't mention any of my chemo poisons, but it talks about Taxol, which is what I had seven years ago and thought was the cause of the problem with my feet. Nice to have confirmation.

So, let's dig further. What about cyclophosphamide? No, it causes hair loss. My hair has gotten thinner and there are small bald patches on my scalp, but you wouldn't know looking at me, so moving right along.....

What about 5FU?

No. So, there's only methotrexate left.

Well, that doesn't seem to be that either.

What did I learn from this exercise? Probably that it's best not to trust my own internet research and I better continue with keeping communication lines open with the Professor. I usually compile a long list of complaints, so I will continue to stick to that practice. Saves much time and mental frustration.

Sunday, July 21, 2013

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.

Saturday, July 13, 2013

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...

Sunday, July 7, 2013

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.

Wednesday, June 19, 2013

A setback

My new hat
She made me laugh when she took this picture with my new hat.  I wasn't feeling too happy, though. I'd just been told that I can't start taking the cyclophosphamide, because my blood test was not good. My white blood cells and neutrophils were too low.  About half normal. What does that mean?   I began to worry, but Keith, the head nurse of the chemotherapy suite, said not to worry. He was sure it would soon recover and told me to come back for another blood test in two days' time - on Thursday.  This was on Tuesday. That would mean I would be going to the hospital like a yoyo this week - back and forth almost every day. I wasn't too happy about the prospect.

I wasn't feeling too happy to begin with. I woke up really tired and achey, happy that I had arranged to get transport.  The weather was iffy and my abdomen was pulling in all directions. I had great difficulty walking upright, even with my walking stick. I have neuropathy in my feet from the chemo seven years ago and I am very careful about not falling. Rather the walking stick than a fall. I can't understand people who refuse to use a walking aid out of vanity, when they clearly need it.

In any case, I felt I needed a pick-me-up. So, while I was waiting for my volunteer driver, I took a look at the volunteer sales desk and bought myself a lovely, hand knitted hat, the one in the picture taken by Nada, the amazing volunteer coordinator. It seems she is not only a brilliant coordinator and human being, but also a good photographer. She made me laugh so hard that you really can't tell I am sick at all. That made my day.

Well, not quite.

When I got home, I felt really strange. A heavy fatigue as well as the discomfort in the abdomen. The weather outside was getting worse. Cold and wet and windy. Slowly it dawned on me that I was having one of my chronic adrenal episodes that I've been living with for over 25 years, something I can never get used to, but something I no longer fear and learned to manage. I think it's called adrenal insufficiency or adrenal storm. It's basically an inappropriate release of adrenalin, and the symptoms vary from very mild to unbearably scary, both for me and those around me. Once I realised what was happening, I went into my coping mode, which is biofeedback - a mind control technique I learned specifically to lower my blood pressure during these episodes.  It's a sort of quick meditation - a Pavlovian mental trick - to put the body into alpha relaxation mode. It helps to quiet the body and also eliminate the fear of the episode. It works for me. It would be nice if one could learn some similar mental trick to remove the cancer as well as the fear.  Ah well.... one can't have everything. (Sigh)

More limbo

It's been two weeks since my last IV chemo and I am now sitting at my computer, waiting for a lift to go to the hospital to get the blood test that will determine whether to start taking the chemo pills tomorrow or not. In the meantime, life continues in interesting ways.

I am not a vain person. My new apartment doesn't even have a full length mirror. However, when I looked in the bathroom mirror last Friday morning and saw the state of my hair, I suddenly snapped. Besides the unpleasantness of the cancer treatment, I was having a bad hair day every day now. I haven't been able to go to the hairdresser for almost three months. It got so bad that even the colourful scarves I used to hide them could not completely give umbrage to my limpid tresses. So, in a fit of pique I picked up the phone and made an appointment with Maria, my recently discovered hair 'artiste'. She works only on Saturdays. 

Saturday. Conundrum. Do I drive, or do I take public transport? Checking tummy to see how much liquid has accumulated. Will it slosh about on the bus and make me sea sick? Tap, tap. Not bad. 

I drove to the hairdresser.  Not a very wise decision, as it turned out. Fatigue set in after an hour of sitting upright in a hard chair. Distracting myself with reading on my iPad eases the discomfort. Sue arrives. I have to go to the bathroom. Emergency. It's on the other side of the food court. Will I make it? Just. Pay hairdresser. Feel very fragile.

Mind over body. Take the escalator up to Woolworths, wobble along the aisles, taking care not to fall. Cashier finally. Phew! I need a chair. Manage to shuffle to cafe and sit. And sit. It took quite a while to thaw out. 

In the end it was worth it. Lovely coffee with Sue, although I doubt it was much fun for her, as my brain had turned into mush by now and subliminally I just longed to be lying on my bed. 

Which is exactly what I did for the rest of the day and most of Sunday.  Monday I felt better and braved the bus to have the abdominal fluid drained. It's only one stop and a bit of a walk to the hospital.  After about two hours of draining the bag was half filled with only half a litre. Two months ago five litres came out in the same time period. This means the ascites is subsiding. The treatment must be working.  I was over the moon. 

Until I got off the bed, that is. 

Suddenly, I was very tired and my legs kind of buckled. Worried, I went to the volunteer office and arranged to get a lift with a volunteer driver the next day, which is today. One day I will tell you about these amazing hospital volunteers - angels in disguise - who give us food, tea, coffee and drive us to our appointments. Always with a smile. They are truly amazing. 

Oops. She is at my door. Anon. 

Saturday, June 8, 2013

When symptoms subside

One of the most important things to do during this cancer journey is to stay abreast of what goes on in the outside world. It is normal and natural, I think to focus inward at the beginning, when everything is scary and it feels like your whole world is falling apart. But, when the medications kick in and the physical pain and discomfort fall by the wayside, it's very important to reclaim one's normalcy. That's what I am trying to do right now.

Last Tudesday (4th June, 2013) I had my second dose of Methotrexate and 5FU. My cousin Anna came up from Melbourne for two days, to help me with any side effects, in case my reaction was as bad as the last time. It wasn't. This time, the Professor changed the treatment. I didn't have to take the Cyclophosphamide pills concurrently and everything was given intravenously, including the Prednisone. This way my stomach was spared.

The first day after the chemo, I felt positively well. I remembered the same effect seven years ago, when I was told that the Prednisone helps with the side effects of chemotherapy and can increase one's appetite. I also seem to have had more energy, so Anna and I went for a nice walk. The next day was diferent and I slept most of the time. Sleep was on the main agenda until today, when I drove with my friend Sue to get some errands done and get a coffee at our favourite cafe down the road.

Today, the fatigue is more manageable and tomorrow I hope to be able to get back to doing some work on my writing projects.

One of the proactive things I am doing to get back to normal and avoid 'chemobrain', is to do brain exercises specifically developed to help with this condition. The software I use is called BrainHQ, from Posit Science.  A number of years ago I participated in a study that compared their Insight program to other, commercially available, brain training programs to see which one is more effective in helping overcome chemobrain. I happened to be in the Insight group and found it wonderful. My chemobrain, which plagued me for three years after the chemo treatment, 'lifted' after about 10 months of intense excercise. So, I was really happy to discover that it had been recently incorporated into BrainHQ.