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. 

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.