Every day is different

Posted on March 26th, 2008 by Cam.
Categories: Let's talk.

I have been coming off chemo again so I started to feel a bit tired by Monday morning. I keep forgetting how quickly a body can start to shut down when trying to pull out of a bender. I went for a ride around Hyde Park but that was enough to take it out of me.

Pain in the bones is frustrating. There is something about not being able to escape from a dull ache from the deepest part of your body. These ‘down’ days have been more severe than I remember the others. It clicked yesterday that it is most likely a result of my bone density infusion (that causes bone pain) a few weeks ago as well as coming off the drugs on Sunday. Not a good combination.

We headed to the gym yesterday but I was about as useless as mammaries on male bovine. I just could not walk properly, couldn’t stand without the desire to faint and had no strength left to give. My legs were also quite sore above the knees. Whenever I feel pain like that, I get a bit anxious, envisaging myself walking along normally when suddenly my bones just snap or crumble.

We went straight from the gym to the hospital for our 3-weekly catch up and results review. My results were once again showing that the treatment is taking effect. My para-proteins are down and stable and my immunity indicators are in range.
We then spent a bit of time talking about the process of stem cell transplanting.

I will be having my central line put in on the 15th of April. The same day I will be given a dose of mephalan that will begin to destroy the myeloma deposits, along with my marrow and immunity. A couple of days after that, I will be receiving my stem cells back. The nasty part of the process kicks in over the next few days, weeks and months for my myeloma-loss, hair-loss, weight-loss, immunity-loss program that I have scheduled.

Our specialist has been very good. It is great to get someone who explains things honestly and sensitively. We discussed what we had been thinking about insofar as how to best plan for our future. This included family, work and management of time.

The best indicator we have is by referring to the 5-year relative life expectancy. There has been roughly a 40% survival rate for males with MM over 5 years, but has recently improved to 50-55%. This is good news, and indeed a lot of the recent research I have been doing into the survival outcomes has been moving quite rapidly in a positive direction. So basically, we can afford to plan for some ‘definites’ within the next two years, and the five-year chunks we will look at as we go.

So we were kind of encouraged by that, as it was not worse than what we expected. Our specialist did put it plainly when he said it is never good when someone this young gets this sick. He said to live normally, do the things we enjoy doing to the best of our ability, and we plan to do so. Yesterday, I struggled to walk around a gym. Today, I was floating in crystal clear water at City Beach. Every day is different.

For now, we rest. Libs has just been through our calendar and we are realising we need to slow down in these next weeks.

2 comments.

Asher's G'ma

Comment on March 26th, 2008.

……had my Carer’s hat on today, looking after our Pastor’s severely disabled 20 yr old daughter. Epilepsy is part of her condition….she fitted badly for several minutes ….. she “came back to us” totally exhausted… but she can’t tell us how she is feeling…that’s part of her condition… at least you can tell us how you are feeling….how your condition is making you feel…. so we can try and share your feelings… and share them with our Heavenly Father

Cam

Comment on March 27th, 2008.

I agree A’s Gma. I can’t even begin to imagine how some people cope with their situation, were it not for people like you being hands and feet. People like you turn ‘walking beside’ into an extreme sport.

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