I was released from the hospital on Saturday with instructions to set up appointments for radiation. Doctors expected that I would have between 5 and 15 radiation sessions. I am disappointed that I might not get to Magee for 3 weeks. Yesterday, I practiced walking with my prosthesis with the knee bending. These days, nothing cheers me up more than walking. I surprised Mom and Athena by walking to greet them. I still need to balance heavily on the walker when I move my right leg, but I know I will get better at trusting my left leg to hold me up. Maybe, by the time I get to Magee I will be pretty good at walking and I won't have to stay long.
The more I walk, the more phantom pains I have that night. It's hard to describe phantom pain. I sometimes feel a jolt of sharp pain where my left knee used to be. Sometimes, my missing foot or calf cramps up. Usually these intense sensations last for less than a minute. Most of the time, I feel a sensation like my left foot is asleep. When I wake up, my left knee often is painful. The first 3 months of my amputation, I woke up trying to rub my sore knee and had to re-learn about its being gone several times a week. Now, I think the soreness is coming from the end of my little leg, but it's a few inches beyond my body. It's weird and almost hallucinatory.
The pain in my left shoulder is likely referred pain from my left lung. Basically, the sensations from my lung go to the same part of my spinal cord as the sensations from my shoulder. My brain is more used to getting sensation information from my shoulder than my lung, so it perceives the pain as coming from my shoulder. It's annoying, but the pain has gotten better. The pain is worse when I cough or take a deep breath. It can be hard to find a comfortable way to lie down.
I have been coughing all weekend, but haven't coughed up blood until today. I have my list of questions for my oncologists, but the most important to me is finding a way to trust that the radiation won't make make my skin dissolve (which was both disgusting and painful). I want to know what makes this treatment ok for me, especially since my body is apparently good at making cancer cells and radiation carries a risk of causing cancer. I also want to know what precautions we are taking. I can't have an open wound on my chest for a month.
Hi Jen, have you tried simple exercises visualizing your short leg with a mirror reflecting your long leg? I know this is among your less pressing problems right now, but simple "mirror therapy", just visualizing your short leg with the reflection of your long leg, doing simple movements, has been shown to be a great pain relief for some folks with amputations. I've used just a cheap plastic mirror from target taped to a cardboard box, then place over the short limb. Maybe worth a try if the phantom pain is persistent? Thinking of you and wishing you all the best ~ kristin
ReplyDeleteI did a lot of mirror therapy when I was in rehab earlier this year. It definitely helped when the pain was very frequent. Right now the pain is pretty sudden and intense, but, thankfully, brief. I will try using the mirror more at night. Maybe that will help too.
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