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.

So far, so good

D-day arrived three days ago. I started to take the Cyclophosphamide pills. This is one of the cytotoxic agents that I have to take to kill the cancer cells. The other two are Methotrexate and 5FU. These are given as 'bolus injections' at the Cancer Centre. The treatment is in cycles of three weeks, as follows:
Week 1 - Methotraxate+5FCU+Cyclophosphamide 4 pills taken orally daily for 14 days.
Week 2 - 5FU+continue Cyclophosphamide.
Week 3 - rest - no cytotoxic agents.

At least, that was the original plan. With the bad reaction I had to Cycle 1, the protocol has been changed. I have to take only three pills for 14 days.  But that will end on June 4th, the day I start Cycle 2, so I am not quite sure just how it's been adjusted. I forgot to ask.

There's just too many things to think about and my mind keeps wondering off the cancer treatment. This time I made the decision not to check on side effects until I don't feel well. Last time I checked the internet when I was in treatment, I found the details of the side effects so frightening that I don't want to face that fear again. My view at the moment is that one has to trust one's team. I do. So, I just go with the flow as far as the medications are concerned.

Mind you, I feel I am a walking pharmacy at the moment.

Normally, I take two types of medication: one for thyroid (which they took out in 1993) and one for blood pressure. Now?  Let me see.  I don't think I'll bore you with all the names, but enough to say that there are two different pills for the stomach, the Cyclophosphamide, and now antibiotics for cellulitis that developed around the peritoneal port they put in while I was in hospital.  This makes drainage a breeze, as I discovered last Tuesday, when I went in to get the inflammation around the port checked and lovely Keith (head of the chemo unit) took one look at me and said: 'It's cellulitis. It happens, so we'll give you antibiotics and, I think we'll drain you too'.

Now, lest you think it's all gloom and doom in the cancer world, let me tell you what happened while I was being drained. First of all, it was really easy. Without the port one would have to wait to go down to ultrasound for the radiologist to check where is the best place for the doctor to insert the drainage tube. The tech marks the place on the abdomen and the patient can't move at all until the drainage tube is inserted by the doctor upstairs in the 'chemo lounge' or the ward. With my 'port' the chemo nurse simply inserted the needle attached to the drainage tube and voila, the fluid was flowing. No waiting.

While the nurse was doing this, a new patient arrived beyond the curtain and I heard, what I thought was a familiar  voice. I thought it was Martha, one of the patients I met 3-4 weeks ago when I first went into emergency to be drained and stayed for a week. She is Greek, with a large, wonderful family. We clicked and decided to keep in touch. I told the nurse that I thought I knew the patient, but didn't want to bother her.  A minute later, a voice comes over the partition: 'Elizabeth, is that you?'  Sure enough, it was Martha.  Last time we talked 3-4 weeks ago was when her mother and sister arrived from Greece. She came to be drained too. With her were her sister, , her husband and her daughter. We had a wonderful, laughter filled afternoon, while I was being drained (it takes a couple of hours) and Martha, who has no 'port', was waiting to be taken to radiology for the ultrasound. When she was gone, the 'visit' countinued with her family.

There are two people I decided to keep in touch with from my two hospital stays in April and May.  Both are amazing women with far more advanced cancers than I have. I am in awe of their resilience in the face of their suffering. I am also delighted to know them, because they are interesting and fun. And it is really important to have normalcy while you go through this cancer journey. Having fun and games is definitely on the agenda. I am really looking forward to having more energy, when I can visit Martha and Marie and play scrabble and exchange jokes. Or, just simply moan together and laugh about it, without being told how brave we are. Laughter is medicine. You have to keep your sense of humour or you may as well just give up. For me, giving up is not an option, so I'll stick to laughter, which comes easily now as I have had no bad side effects yet from the Cyclophosphamide. May it continue so.