One step forward, one step back

It's been a very strange day. The last day of this particular two week chemo cycle, which was rougher than the last one. My eyes were a real worry. I noticed that my vision got worse just after I took the cyclophosphamide pills. It was hard to focus without the eye-patch for much of the day. So, I did a little research. I googled both the cyclophosphamide and the 5FU. I seemed to recall both had visual disturbance as a side effect.

What would we do without Google?

Well. we could turn to ask.com.

I guess there isn't much difference between them, because both came up with the same answer for 5FU - 11.5% people treated with it reported blurred vision.

Another study on cyclophosphamide found that after 1-6months of treatment 31.58% of people taking cyclophosphamide suffered some form of medium blurred vision, including those who were also treated with methotrexate.

OK, I am not going to go into the statistics, because that's my weakest subject, but the point is that, even with my limited knowledge it's plain to see that the blurring of my vision is the result of taking the chemotherapy drugs.

Naturally,there are other side effects as well. Today, I had a body-full of those too. About a half hour after taking the pills my body became very heavy and I simply could not keep my eyes open.  In the morning, I had plans for working on my assignment, but that was not to be. Not until the late afternoon, when the cyclophosphamide was supposed to have cleared for the day (4-5 hours, according some of the information I've read). Within a short time I was fast asleep and woke up around 2-3 hours later. Well, that's half the day gone, right there.

Then, my eyes wouldn't focus and my head was mush. I couldn't concentrate on anything. So, I gave in and played games on my iPad. What a waste of time. But hey, if my body wants to rest, why not put on the music and let the games begin!  Tomorrow is another day and I will not have to take those damn pills for two weeks! Halleluyah!

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...

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.