Farewell

This is definitely the last entry in this particular blog. I went to see Dr A.S. the gorgeous surgeon last Monday for my 3rd annual checkup. All clear! Except..a cyst somewhere in lieu of a lymph node; sore ribs and sore feet. But hey, I can live with all that and even with the diminishing, but ever present chemo brain.

In the interim, Dr A.S. has become Associate Professor and I am about to embark on a new direction in my professional life as well, following my mild success at writing short drama and community related work. So, cancer and its treatment related issues are very much in the background, which makes this particular blog past its usefulness.

I will continue to be active in Dragons Abreast, even if only as one of their photographers and permanent novice paddlers (I can't race for non-cancer related health reasons). Also, I have joined the newly formed Jewish Women's Breast Cancer Network to help women undergoing treatment.

So, thanks everyone for all your help, patience and support over these past three years. I truly don't know what I would have done it without you all.

Chemobrain revisited

Well now, it's official: chemobrain exists, I got it, and nobody knows what causes it or what to do about it. At least that's the gist of my conversation today with Dr JV, who specialises in these things and is member of the International Cognition and Cancer Taskforce.

A true blue Brit, with a very Hungarian surname that nobody seems to know where it originated, Dr JV actually listened to my litany of complaints about how hard it is to focus on things technical; how I miss my clarity of mind and ability to multitask. I was delighted as each gripe merited a note on my chart. Well now, that must mean something! She even noted that acupuncture helps! But that's only temporary, and I want a permanent solution.

She can't promise me that, but I do qualify to participate in a new study that may possibly help. Of course it's a double blind study, and with my luck I'll probably be put in the control group, but never mind, I was assured that should that unhappy situation eventuate, I would be offered the support that promises the best outcome of the two approaches that are being studies. So, I can't lose, and I signed up to support science. Watch this space!

A bad day

It's been a really shocking day. So glad it's almost over.  All I have to do is to finally finish the freelance story I've been working on for weeks, never being able to quite settle down to it. I stretched it out as long as I could, always having the excuse that I wanted to interview someone still.  I did the interview last week and I should have finished it by Friday. Today is Tuesday night and I am still only half way through. I can't focus and I don't really understand it at all. It's all too technical, my brain doesn't take it in. Not as bad as a year and a half ago, but still clearly chemo brain for sure. 

One thing I don't quite understand is why it's only the technical stuff that is so difficult and not the creative writing. Today I had an insight that might explain it. Maybe it has to do with left and right brain activity. The technical writing requires left brain virtuosity, while creativity resides in the right. So, my thinking is that maybe I have remnants of chemo-brain in the left.  This may just be rationalisation, but I'll mention it to the Professor tomorrow.  

As the day progressed and still nothing got done (on the writing front that is, I clipped the bush, cooked dinner, watched a movie, did some qigong exercises, etc) I got more and more hysterical. Finally I called Angela, my cancer counselor and luckily she had time to listen to all my nonsense.  She reckons I was just as flustered before I had my second year checkup with the surgeon, and this is just the same fear and also the worry about changing medication. Also, regarding the chemo brain, she said it's just part of the normal recovery that focus and clarity comes and goes. Darn, I thought I had overcome that problem already. 

Honestly, I think time is measured differently in cancer recovery from normal. Everything takes so long.  By the time you can say you have recovered, you either die of old age (wishful thinking) or the bloody thing comes back. I think I understand my sister-in-law Susan, who died of breast cancer 22 years ago. About 7 months before she died, when I realised how serious her situation was, I asked if she wanted me to approach my contacts at the National Institutes of Health for some new treatment. I was working at the Voice of America at the time and was a regular reporter working at NIH. She said no, she just wanted to live her life and then go. 

I must say I was shocked and didn't understand her attitude at all. Now I do. Considering how much better our treatment is today, I can imagine that she didn't want to go through the awful ancient chemotherapy again. Oh dear, why am I thinking so negatively?  Well, of course because I don't want to switch to Aramidex. The upside is that I do have a bargaining chip.  I called my endocrinologist and made an appointment to get my adrenal adenoma checked out. He should be able to tell me authoritatively about whether my fears about Aramidex are valid. The appointment is for July, so I bought myself some time. 

OK, Professor.  I got myself together.  Get ready, here I come!

Decisions

It appears old age IS creeping up on me, as well as renewed health. What a combination!

A few days ago, I woke up with my right thumb stuck at a strange, perpendicular angle. When I moved it, it clicked back to vertical. Weird! A colleague assured me it was osteoarthritis and proudly showed me several deformed fingers on his own hands. Then, he told me how to deal with it. God bless him. It actually works!

Yesterday, I went to work  and I felt very strange as weird shaped lines started floating in balletic rhythm in front of my eyes. When I started to shiver, which is usually a sign that my adrenal episode is ending, I was relieved and thought the eye thing will disappear too. I was wrong. It got worse and I freaked all the way to the eye hospital. I can't take it, I cried. First the cancer, now my eyes. Will I ever be healthy again? (I completely forgot about the osteoarthritis!)

Well, the good doctor brought every conceivable lens to check the eye and put enough anaestheic and/or relaxant in it to blur my vision for the rest of the day. 'Floaters' -  he said. No, can't do anything about it. Comes with age. A kind nurse gave me a sheet that said the same thing. 'Live with it' – they advised.

It's a marvelous thing that when something happens to you, and you talk about it, suddenly everyone else seems to have had the same problem. High blood pressure? 'Oh, I take pills for that'....Cancer? 'Oh, I've had that 12 years ago'...Floaters? 'My mother has them'...When you come out of the closet, everyone else seems to have been there, and some.

But, like the ads that promise: 'But wait, there is more...' my problems are not over and the decisions I will have to make next week will be really hard, that is quite clear, and my indecision is profound.  

I am having my 2 year checkup with the Professor. He will want to change my medication from Tamoxifen to Aramidase. I know, because we've talked about this last year. I told him I didn't want to switch to Aramidase, because it acts on the adrenal gland and, thanks very much, I am very familiar with adrenal problems. What I have is enough, I don't wish to have any more. We agreed to disagree and not to talk about it - until next week.

So, just like before the annual checkup with the surgeon, I am now stressing about this coming meeting and all other problems seem pretty minor.  Isn't it amazing? Well, I guess it's just common sense.  There's so much to this recovery, you can only take it one day at a time, and one step at a time. What I find so daunting is that I am not sure I want to have the freedom to choose. What if I am wrong? If the doctor is wrong, I can blame him and feel like a victim. If I make the wrong decision, I only have myself to blame. Decisions, decisions....

New speed

It took me 10 minutes, or less to clean a very dirty, crusted grill. Actually, it's a George Foreman Lean Mean Fat Reducing Grilling Machine!  It's the best thing I have in the kitchen, besides the oven/microwave combination I got almost three years ago, when the old microwave gave up the ghost just before I moved here from West Ryde. 

The reason this is such a momentous event is that I have been procrastinating with this particular cleaning for the past two days, when I grilled the best Lebanese sausages I got from the Halal butcher in Merrylands. I do move about greater Sydney a lot, so I try to find butchers who have good selections besides every conceivable variety of pork that's in my local shops. No matter how tempting, I just don't eat pork. It's been 30 years now (But, that's another story, as the saying goes).

In any case, the important thing to note here is that my perception of time has changed during the cancer treatment and I think I am finally getting back to something approximating the fast pace at which I used to be able to do things. At least, faster than things have been done in the past couple of years. 

I can't really explain it, but sometimes it seemed that time was an elastic band, stretched forever to get one task done. And I wondered how I could ever have packed as much into one day as my hazy memory imagined I used to do. 

Today I realised that I was going gangbusters, like speedy Gonzales, and it was amazing how much I could pack into one day without really getting tired. 

My take on this is that my perception of time has pretty well bounced back to normal and also, my energy level has returned as well. 

I find I get quite annoyed when, trying to figure out how much further I can recover, well-meaning people reassure me that they have the same problem and it's all to do with age! Balderdash!  I am recovering from the devastating effects of chemotherapy! Surely one recovers first, before succumbing to old age oblivion!  (OK don't answer that, I don't really want to know!)

Act II

It's my mother's birthday today.  She would be 97. I am sure she is happy not to have reached this grand old age. Mom was always afraid of being dependent and a burden. Well, she wasn't. She died of a massive stroke at 74. Every year since then, I wish she was here. This year is no different. Mom had a special way of looking at the world - she looked for beauty and goodness everywhere. But shit happened at regular intervals and, when it got too much, Mom just kept brushing it under the carpet. She presented a happy, funny face to the world, while the memories of unresolved hurts and pain festered inside into bitter, never to be resolved, resentment. 

I think I was pretty well along the same path until this Big C hit, which, truthfully, I expected to 'overcome' as I had done every other problem in my life. But, as I travel along the road to recovery, I realise that this is not going to happen.  I am never going to be the same and this bloody recovery may take the rest of my life. 

The other day I started working on my father-son screenplay and took out some old notes. They were from 2005-6. Suddenly, I had this weird thought: "How come it's been so long? Why haven't I finished this yet? What have I been doing in the past three years?" And then, the question: "Where have I been all this time?"

It was scary. I picked up the phone and called Angela - my wonderful cancer counselor. I am determined not to end up like Mom and leave this world with unresolved pain. 

Last year was a year of healing: I made peace with my brother and the years I was a stateless person, and all the other things that happened. Nowadays, I feel at peace. I am never nervous and I don't lose my temper as I did before. I am no longer the "Hungarian Firecracker" of old. 

Healthwise, my energy returned, my memory improved and, to all intents and purposes, I am healthy as a horse. Yet...

Angela says the doubts and worries, the feeling of having been away, are part of the normal healing process and recovery from cancer.  However, on a personal basis, she says some of my worries arise from the fact that my life is returning to normal and I am so used to and am so good at dealing with trauma and drama that I get very uncomfortable when life runs at a normal pace.

Wowee! I never thought about that! So, now I have to worry about not worrying about living a normal life?  That's a bit too deep, even for me. I think I'll just take Angela's advice and return to writing this blog and see how things develop. 

Maybe Mom right. Look for the silver lining and let the rest take care of itself..........Happy Birthday Mom!

Curtains for Act I

Eighteen months have passed since I've started this blog. That's a long time by any measure, and I think it's time to wind up this intense focus on my health and welfare. 

I originally started it to allay the fears of my family and friends scattered all over the world. It was a selfish move, because I didn't want to repeat myself over the phone a thousand times. As it turned out, many other people found my cogitations interesting and even 'inspirational'. 

So, to summarise the current situation:  as far as we know, the cancer is in remission (can't say it's gone completely, because nobody knows).  I feel fine.  There are days when my feet no longer hurt, and I am very conscious of the absence of pain. I can walk up the stairs without huffing and puffing and no longer use the lift in train stations. I go dragon boating once a week and I try to do some form of exercise (qigong and swimming) at least 4 times a week.   

My weight is stable at what it was before the cancer diagnosis (which is still way too high, I know), and I am getting fitter every day and hoping to shift the flab eventually. 

I can't do dragon boat racing (yet), because I discovered that it induces my 'episodes', the adrenal storms that have been plaguing me for the past 22 years. I also can't work 5 days a week in an office anymore, because it's just too tiring: my knees lock and my right side, the site of the surgery, gets sore (possibly from the accumulation of lymph due to sitting in one place, I don't know).  Although the 'chemo brain' is improving, I still can't focus for long periods of time and I can't multi-task (my forte in pre-cancer days).

My interests have also shifted markedly. I am no longer a news junkie, and I pick my intellectual and every other fights very carefully. Mostly, I slough off unpleasantness, whether directed at me or not. I can't watch the news without crying, so I don't.  I just listen on the radio. 

What else is different?  Every day I say the she-he-he-yanu prayer that I've lived to see another beautiful day. I am calmer and more accepting of things as they are, and am no longer terrified of dying. I am still planning to live for another 20 years, but if not, I still think I've had a good trot. My plan for whatever remains is to continue writing my screenplays, short stories and books that have been in the planning stages forever, and to actually finish and sell them.  Also, I am getting more involved in doing community relations work – interfaith and living in harmony. 

Some people tell me that they are happy they had the cancer, because their life is better now than before. How awful! My life was fine before and will be fine after, albeit different. The cancer hasn't stopped me from being my crazy me. It simply forced me to look at what I am doing, accept the good and the bad and freed me up to adjust the trajectory of my life in the direction that I really want it to go. 

Needless to say, I could not have done all this without the love, good wishes and help from all of you out there for whom I wrote this blog. 

Love you all and thanks for everything.