Friday, January 30, 2009

Taxol hell!

Naomi and the 'Big Girl' in foreground-Naomi in black

I guess I got off lightly with the AC arm of my treatment. Yes I had burning mucus membranes, burning skin and scalp, hair loss and lots of queasiness but it was somewhat tolerable. Most people suffer much worse. But I am finding Taxol intolerable. I was warned that I might have muscle aches similar to that from the flu by the 3rd day but the pain should be treatable with NSAIDs. By late yesterday afternoon, I could not do anything to make myself comfortable. My muscles, particularly in my thighs, were unbelievably painful. Any pressure on them results in more pain. I kept tossing and turning last night trying to find a position that I wouldn't be in pain. Ibuprofen did nothing. I had Steve leave the room as I knew all my tossing and moaning would keep him up. Finally I took vicodin, which has knocked down the pain to something I can tolerate. I don't understand the mechanism of the pain. Nerve damage? Over the years I've had lots of temporary muscle pain due to overuse injuries from marathons, triathlons, etc but nothing that ever approached the pain I had yesterday. Even dealing with the broken arm felt better as it would not hurt if I could keep it still and supported.

Hopefully this will be as bad as it gets and the vicodin is working. I can always take more and knock myself out. With the arm, I was on Percocet for 2 weeks, which felt way stronger than vicodin. By the 2nd week I was just taking half-tablets. I barely feel my bad vein and the clot has stopped migrating.

I tried to get reimbursed for my wig purchase yesterday. In 2007, we had MCare, a local HMO based on using UM services. That dissolved and our employer gave us Blue Cross instead but not Blue Cross of Michigan, Blue Cross of New Jersey!!! For the most part, they have covered almost everything with no deductables until yesterday. Did you use an in-service provider for the wig? Noone told me I had to. I was told that a wig would be covered-not that I had to get it from a special provider. Finally they told me that they will cover the wig if there is no provider within 50 miles of me. Then they told me that there is a provider in Toledo. I said that there is no way that I could get to Toledo in less than 60 miles unless I was a bird flying a straight line. No in-service providers at all in Michigan!

Through the slippery slush and rush hour traffic, we went to Birmingham to watch the Rats lose against the team ranked first in the state. I will post later a video of Naomi trying to guard their center who is 6'6". Naomi looked very tiny next to her even though she is 5'10". I couldn't think of anything yesterday that I would enjoy eating but we then drove by the Star Deli in Southfield. Mushroom barley soup-perfect! That was dinner and breakfast.

Josh thought he would be so happy by the relief of keeping his job but seeing grown men cry as they were told one by one over the last 2 days that they have no job has been very hard on him. Such despair.

video

1 comment:

Renee said...

Sue,

Tell the Onc Doc you want Taxotere. It is similiar to Taxol, but much easier on the body.

10-30 grams of glutamine and increasing Vitmain B6 and B12 really helps with the neuropathy.

It seems like a road that you will never get off, but you are almost to the end! Hang in there, my friend.

~Renee

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