It's been a really bad week.
The scary thing is that we don't know why, since the Gamma Knife treatment seems to be shrinking the brain tumors we worked on a couple weeks ago, and the PET/CT scans look as though the body tumors are relatively stable or somewhat less active (although there are a couple more in the liver and lungs, they don't seem to be affecting me much per se). They were able to get to the little tumor in the back of my head on Wednesday, and the neuro guy says that the tumors are small and there is little-to-no swelling in the brain.
So why the vertigo, the nausea, the weakness, the falling, the misery of a foot that not only won't hold me up or obey my commands, but is pulling the muscles of my foot and leg in such a way that they are cramped up, frozen, and 'asleep' all the time?
I can't get up to our house any more - at the moment, that's the big issue. I am going to need to move to my folks' house in order to go to doctor appointments - and in order to do that, I need to move my hospital bed and various sick-person's accoutrements to their house. And they don't have a real guest room, so we're forced to stick me in their living room - a terrible amount of trouble and loss of privacy and fearful amount of work for them and for me.
Will the trouble itself force me into hospice care? I don't feel anywhere ready for that yet, in spite of the pain and debilitation... but there are all sorts of questions that accompany these decisions. If I get better for a while, would I be able to move back home for a bit? Would moving me back and forth be more bother for my folks than all the work and sacrifice that caring for me entails, or less? Are my folks both physically and emotionally strong enough to deal with my needs? For how long? Am I emotionally strong enough to deal with all the various changes that my condition and my living quarters are forcing on us?
Will I essentially be forced to quit treatment and abandon all hope of a bit of extra time, all because of a relatively short but unfortunately steep set of stairs between me and my doctors? At the moment, that's how I'm feeling. I'm being put down by a set of steps...
6 comments:
Family is so important. You are truly loved by your family and they wouldn't offer help if they didn't truly want to do it. Accept the love and know that everyone will end up blessed.
So can you rent a ramp!? As for your parents, if they offer to have you stay there, they mean it. They want to help. With all the 'good' news on the shrinking tumors....the symptoms are soon to shrink too, okay?!
The ramp might be a great alternative to this move. I didn't know you could rent them, but it makes sense. Do explore this if it seems like a possibility. And indeed, good news about the shrinkage, etc. Hope you can enjoy your mother's day in the sun, feeling better!
we cannot get a ramp that can get me into the house - the angles are too steep, unfortunately. There is no doubt about my family's love and desire to help, The problems lay in the emotional and physical requirements - I am a large person and my mother is small and in her 70's; my dad has a bad back and artificial hips; my mom is very sensitive to my pain and will suffer and panic every time I express pain or distress (which is inevitable, especially when there will be no privacy for any of us - hard, since we are all very private people). Not to mention all the practical issues, of which there are many,
Options are somewhat better once you go into hospice care - more aid and equipment and even housing may be available (for a cost, of course) - but in order to do that I will have to give up all cancer treatment and just let the tumors take over and kill me fairly quickly. Which in my case will be a painful process... so far the pain meds have brought more pain and dysfunction, rather than less.
Sometimes there are no good answers, and unfortunately that is where we are now.
But I am incredibly grateful that my family is so loving that they are willing to go to great inconvenience and sacrifice in order to try to help me keep my choices available for as long as possible. They are wonderful people, that's a sure thing!
Hi Eileen
Just wanted to let you know I am thinking of you. I am going to the sundara event that I think you went to a couple years ago. Take care
KOB
Http://www.ihatebreastcancer.wordpress.com
Eileen, what about a double ramp? You know, one that goes down and then turns and goes down some more.
Linda (from Hand Prepared Fibers)
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