Dark after light

Didn't have to wait long to see how things go this time. It's the next day from the previous post and I am crashing - hard. Had a sleepless night last night. Was up two hours without being able to go back to sleep. That's from the steroids they pump into you with the inravenous methotrexate and 5 FU.

Now, I am having problems. My eyes are blurred, I am dizzy and my mouth is burning from the cyclophosphamide pills. That will go soon, I know from experience, but I am not sure how long I'll have to fight the dizziness. I find that if I focus on mental things then somehow the physical hardship is more bearable. I don't want to sleep during the day, because I don't want to lose total control of my day. Of course, I may have to. I'll just wait and see. For now, I'll try and do my classwork before friends drop by...

Forget the class work. It's 4-5 hours later. My friends have come and gone and I had a chat with another one on the phone. I thought I was ready to take a nap, but no. I can't get settled - on or off the bed. I have to keep moving, but doing what? My body is shaking internally and I am not balanced. I am worried I might fall over if I go for a walk....

I had a lovely, light lunch. Body seems a bit better. Head still fuzzy. Maybe watch some TV or listen to music? Very listless, jittery. A chemo frenzy? Been there before. It will pass.

It's quite amazing how fast one forgets the unpleasantness of chemotherapy. Maybe just as well. Maybe the body is programmed to recover and that's how people going through major physical and psychological traumas can actually recover and lead productive lives.  My mind wonders. Time to rest. The body will take care of itself.

Taking it in stride

This was a good week. I was feeling well and focused on my writing. I finished the web story on deadline and delivered it Wednesday morning, before the start of THE BIG DAY – my appointment with the Professor.

The Professor looked dapper and suntanned after his sporting holiday in Italy and he had good news for me. My cancer markers are down, which means that the treatment is working. My white blood cells are back to normal, so we can have treatment. And, last but not least, all my various organs, like liver and kidney, are working fine. Phew! It was good to hear. But then, there was a down side.

I am not out of the woods yet and the Professor could not tell me how long I have to have chemo treatment, which has been adjusted to my current status. Instead of a three week cycle, we now have a four week cycle. Two weeks on, two weeks off . This will go on until I leave for a planned, six week vacation with my family in the US in November.  On my return, there will be a reassessment and we shall see.

So, the way I see it, at present my best option is to settle in for the long haul and treat this as a quasi chronic disease and get on with my life. The question that remains is how to do that.

Until now, I had the philosophy of taking one day at a time.  I had incredible emergency help from my family, community and government services. This can't go on forever, so I have to plan to re-enter my normal life and earn some money. My current assignments are a good measure whether I am physically and mentally ready to do that.

So far, so good. Yesterday, the day after the intravenous chemo, I was pretty groggy and, even with my wonderful helper, Shoko, I could only get to my local supermarket for a few groceries. Today, however, I was quite all right. I mean, better. I went for a walk and was still dizzy, and my eyesight has been shoking today, but my head is clear and the dreaded chemobrain is still at bay (I do my brain exercises every morning in the hope that the dreaded fog will never rise this time).

Another thing I started to do is to organise my exercise regimen.  On Monday, I went to the gym and got assessed for gentle strengthening exercises. I am going to see if I can go back this weekend, or latest Monday.

Everything at the moment is trial and error. I don't know what my abilities and limitations are for the two weeks of chemo treatment. That is the next lesson to learn during this particular cycle.

And talking about learning. The only thing that suffered this week was my studies. I have only done about the third of the assignments, if that. Tomorrow I'll focus on catching up and see if I can make up what I've missed so far.  In order to get a certificate, I have to pass a quiz each week. So far I got 80% and 90% for the first two weeks respectively. Now we are getting to the end of the third week and I have two more to go. Let's see what I can do. If I make it, I'll definitely be superwoman! If not, well, I've tried. It's still a triumph in my eyes. What do you think?

Time flies

Time flies when you are busy. I've been very busy ignoring the fact that I am having chemotherapy next Wednesday. It's been great fun feeling increasingly more healthy and being able to do small things, like walking down the street to the local cinema and/or going out at night. The best gift has been that my brain remains unaffected, so when the call came for a freelance commission, I could honestly say: 'yes, I'll do it.'

As a result, I now have projects coming out of my ears. I am still doing the online Data Driven Journalism course that I think should help me with my essay, but the essay is now on the backburner.

I've been commissioned to write something for the 25th anniversary of STARTTS, the NSW Service for the Treatment and Rehabilitation of Torture and Trauma Survivors. As you may guess from the name, this organisation deals with refugees and asylum seekers. I've been associated with them, both in a volunteer and professional capacity, since 2007, when I participated in their Sharing our Stories, Sharing our Strengths conference. In 2008 I wrote and essay for their 20th anniversary. About ten days ago they contacted me if I'd do a reprise and write again for their 25th anniversary. This is the most amazing organisation (and they pay well), so I immediately said yes. It's been a wonderful week, being back in my journalist stride, interviewing, thinking story. I completely forgot about the looming chemo.

Today I came down to earth. I had some bureaucratic stuff to sort out with my energy supplier, who have been shamelessly overcharging me.  I completely fell apart. I can't take indifference, it seems. Not to mention indifferent bureaucracies. They want my money, but offer no service.

What happened to THE CUSTOMER IS ALWAYS RIGHT?  It seems to have gone the way of the dodo. Nowadays the customer has no rights, no say-so, just to hand over the money for service or goods, no matter how shoddy they are. There must be a way to get back at them, but I sure can't think of anything now - except not buy anything. Well, that's not hard, as I don't have much money to spend. Maybe that's why they don't care.

Ah well, I did find one solution to get them moving.  Follow my own advice to my mother, burst into tears and tell them I am on chemotherapy and can't cope. Amazing how fast things get done!

My mother (may she rest in peace) was the type of person who never wanted to burden anyone with her problems. One time she had a particularly unhappy altercation with bureaucracy and she was really upset, crying her eyes out at home. I told her: 'Mom, don't cry at home, cry where it counts. Cry in the office of the idiot who is giving you the runaround.' She did and was amazed how fast she got results. Amazing how smart I was when I was younger, healthy and cocky, but I am not sure I like taking my own medicine. I've had enough of crying. Truly.

Brain matters

Yesterday was a perfect, sunny, spring day and the weatherman promises the same for all next week. Yet, we are still in the winter season here in the Southern Hemisphere. Yesterday it was over 20C and it is expected to be up to 24C tomorrow. It's very welcome as I walk more and more to improve my physical strength. I try to walk every day when the weather is good and I am signing up for the gym next week if I remember to get a doctor's certificate to exercise.

Last week I forgot, what with all the things I had to discuss about my visit to the eye hospital. This coming week I have to have a blood test for diabetes, and then the only test remaining is an MRI to rule out vascular problems in the brain.  I am pretty sure that will be clear too, as my brain is the only part of me that seems to function as well, if not better, than before this current visit from my cancer monster.

My brain. I think I may have mentioned before that I had post chemotherapy cognitive disfunction, or chemobrain, for at least three or four years after my first chemotherapy in 2006-7. It was a nightmare. This time I am foggy while I take the cyclophosphamide pills, but as soon as I stop the fog clears and I can think clearly. What joy!

Since I am chemo free for most of this month, I am focusing on my writing. This time I am thinking of entering the Calibre essay competition ran by the Australian Book Review. I started the research two weeks ago and am really fired up, as I know I have only until 28 August before the fog descends for another two weeks (if my blood test is OK, that is).

I find the chemo much more manageable now that I can plan my activities. I seem to take things in stride. I focus on seeing my friends and doing my research. I do my brain exercises every day and try to do creative writing exercises as often as I can as well for this month. I have to be careful not to overdo things, which I have a terrible tendency for. Tomorrow, I am starting an online course in Data Journalism. I am hoping it will help me with mining the data I am collecting for my essay.

So, there's method to my madness, but I still have to watch that I do only as much as my energy allows. And this is my challenge for now: to do what I love to do, but stay within the constraints dictated by my health. I think that's one of the hardest lessons to learn in this journey.

An eye day

It's Monday.  As planned, I left home shortly after 8am and got to the Eye Hospital emergency around 9am. I had a long, uphill walk from the bus to the hospital, and was very proud of myself for not being out of breath. That's called 'getting feelings of achievement from small milestones' in my book.

It was quite a long wait before I saw the doctor, David, a skinny little thing with a big brain. He asked all the right questions and asked back to make sure he got right all my strange symptoms. He talked about having to check first for the 'nasties' - like stroke and cancer - just to rule them out, you understand - he said. Sure I understood. But, I was so convinced it's a chemo side-effect that I simply refused to entertain any other possibility.

So, what are the symptoms?

It's a bit unusual, to say the least. When I read, all the letters are slightly blurred and periodically the line splits into two. Not into parallel lines, but a straight line and then an angle.  Very strange. Enter the boss. I think her name was Elena, but am not sure. Very nice, no nonsense woman who knew exactly what she was doing and talked to David as the seasoned educator she probably is. This is a teaching hospital, you see.

Dr Elena explained that the muscle of my left eye is weak and the right one compensates for it. This means that I have something like lazy eyes, but the question is why now at the ripe old age of 69?  She also explained that they have to look for all possibilities, so she ordered: a blood test (for infection); a visit with the orthoptist (to measure my eye movements); a CT-scan (to look for cancer and stroke); an MRI  to check the CT-scan, and a neck ultrasound to check for possible vein blockage in the neck that could affect the eyes. They did almost all the tests, except the MRI and ultrasound. That's why I spent 6 hours of today at the hospital.

And the outcome?

I was most pleased when the doctor who did the CT-scan and did a fabulous job inserting the canula (it didn't hurt at all) for the contrast dye, called me to say that the scan was fine.

Phew, that's a relief. But so what? What can I do to overcome this (hopefully) temporary problem?

I can now tell you that I am the proud owner of a black eyepatch. I look like Lizzie the Pirate or Lizzie the Ancient Warrior.  Add to that the fact that my hair is really beginning to thin out from the chemo and ....  OK, no more of that.
I am trialling the patch as I write this and I have to say that it's a most bizarre sensation, but it seems to work. I change sides periodically. 


When I take the patch off it takes a while for the eyes accommodate to focus on the page, but no double or split lines.

 I can live with that.

A Short Respite

No chemo for a month! That's what the Professor said. I thought he meant he wants to see if the anti-estrogen pill will do the trick and I won't need need more chemo.

NO WAY!

My treatment is done in a team. That means that no matter whom I see, they write up my condition and inform every other member of the team. Initially it was the surgeon, medical oncologist, radiation oncologist and GP (my family doctor). This group has now expanded to include my cancer counsellor, the other Professor who saw me in hospital a few months ago, and someone else, whom I don't even remember. The reason I know all this is because I get a copy of every letter any of them write to my GP.  I like it. It makes me feel involved in my treatment. On the other hand, sometimes I think it would be better not to know everything.  Now is one of those times.

Ever since Tuesday, when I saw the Professor, I told my friends that the treatment is working and possibly no more chemo. My head cleared, I have a new writing project and I was over the moon with renewed optimism. Then came the letter.

Well, the reality is that I am better. The ascites is almost gone, I look healthy (even though my hair is getting quite thin - but still not noticeably) and I can even walk without a cane for a little while. But my treatment continues to be Exemestane and the three chemo poisons. So, that means I am not out of the woods yet. The saga continues.

In the meantime, the latest issue is my eyesight. For the past month, if not longer, I noticed that my eyesight is deteriorating. The letters on my laptop are becoming blurred and I have to make them larger to read comfortably. Worse still, my glasses are multifocal and sometimes the lines on the page seem to split at an angle. Yesterday I drove to the next suburb and I experienced this split when I was driving. What is going on?  This is intolerable.

I suspect this is a side effect of either the chemo or the Exestemane, or both. So, come Monday, I am going to the eye hospital emergency to get to the bottom of it all. They are wonderful.  A number of years ago I discovered contact lenses. I felt liberated. No more glass bumps on my nose, no more dirty glasses. Well, the freedom didn't last long.  One day I woke up with my right eye feeling like it had sand in it.  Someone suggested I go to the Sydney Eye Hospital.  I didn't even know such a thing existed. It was quite a long wait, but I think they saved my eye, as it turned out to be a very bad infection from the contact lens. Ever since then, I always go there whenever I feel I have a problem.  Monday I'll queue up again and wait my turn. I am sure they will have an answer.

And, on 28 August, when I see the Professor again, I am pretty sure I'll be looking at a new chemo cycle. Ah well. I have 25 days to get my strength back and get stuck into my writing. I have an apppointment with the trainer at the gym on Tuesday. I hate the gym, but they have a wonderful swimming pool. One can't have everything, I suppose.

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.