MM – August 07, 2014

Money woes… still worrying over where the money is coming from but the recent tests all went well. I have been advised that I have an excellent chance of surviving with this disease for at least 10 years and possibly as much as 20 years and with the progress that has been made in the last decade who knows what advances will be discovered given time! Test results showed that the rest of my organs and body functions are all in great shape, if it wasn’t for the damage now caused by cancer, I could have lived to be a hundred.

One of the side effects from taking the Bortezomib is Neuropathy (damage to the nerves in the extremities, fingers, toes and such) I am experiencing this side effect and it’s one of the reasons the Doctor reduced the chemo treatment from twice a week to once a week. Unfortunately, it came back worse than ever in July. Both of my feet up to the ankles have the sensation of tingling and mild pain and across the top of my feet at the base of my toes is tender and feels like the area is bruised, although there is no visual sign of bruising. The soles of my feet feel like I am walking on tender puff balls, although there is no visual sign of swelling. The sensation regularly goes up the back of my legs, from the calves to my knees as well.The Doctor has stopped the treatment and has advised me to stop doing so much walking and to keep off my feet as much as possible or I may have permanent damage. This is all well and good, but I still have to get about to all these tests and appointments and I can’t afford to drive everywhere.

Stem Cell Separator machine

Stem Cell Separator machine

I have taken the G-CSF injections, (I self injected to save on the repeated trips to the hospital and monopolizing nursing staff that have far more important demands on their time over a long weekend). Although, I did suffer a couple of days of associated bone pain and headaches, not really headaches as much as my skull hurt, very weird sensation. But I did end up with a migraine one of those days.

For the most part, the preparations outlined in my previous blog went along great with only needing 1 full day of being hooked up to the 2 – IV lines for Stem Cell collection. Everything went so well they were able to collect enough stem cells with just 6 hours of being hooked up to the separator. I was so relieved to not have to go back and be re-hooked up for another day to that machine.

I panicked for a bit because I had to arrange for a volunteer driver to get me back and forth to the hospital for the collection, even though I had called and made the request several days in advance, apparently no one was available. I didn’t know what I was going to do, but at the last minute it was covered by two of the BC Cancer Agency Volunteer Drivers. This is such a needed and wonderful service, done by some very caring individuals. But I find arranging all these details very demanding on my limited energy and when they fall through I find it hard to cope. The stress from all of these combined worries is unbelievable.

Looking forward to a much needed ‘break’ from hospitals for a few days before the next and more challenging part of this proceedure, which is the upcoming pre-Hickman Line insertion blood work, Hickman Line catheter insertion, 8 hour Chemotherapy treatment and then the actual Stem Cell Transplant, which is when they give the stem cells just collected back to me. They advise the first month will be the most incapacitating time for me during recovery. So I will use this ‘break’ as best I can to prepare in advance for when I can’t do things easily for myself, such as cooking/freezing pre-made meals and cleaning away as many household germs as possible.

Happy Living!

Messy Shepherdess

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