Wednesday, August 10, 2016

" oh, Lord, don't keep me up all night, side by side with the moon. with its desolate eyes miles from the sunrise, the darkness inviting a tune, the insomniac's lullaby" from paul simon's Insomniac's Lullaby

i had my second to last, probably, physical therapy session this week. unfortunately my insurance company only allows so many visits per year. i wonder when health care in this country will focus more on what keeps us healthy, instead of mainly just treating our illnesses? physical therapy has been one of the best things that i have done for myself- as far as taking care of myself. my physicians did not suggest it, but i asked for treatment, and i did get an order written for the physical therapy.

this week, my physical therapist  measured my " lympedema arm" as i call it, and compared the measurements to what they were before i had the lymphatic massage. all of the measurements were better than before, and by that i mean my arm is now somewhat smaller. most of the measurements were just a little better, but one was a whole centimeter smaller. and maybe it is just me, but i feel better. the swelling was also in my side, chest and back. the physical therapist did not measure this, but she said that she could tell ( and i can,too) that the swelling has gone down quite a bit from these areas. lymphedema is a chronic condition, and can not be cured. but it can be managed, and a person can feel better when receiving the right care. of course, i have to do my part,too. i have to wear my compression sleeve and do my massage at home. infection ( cellulitis) can be a serious complication, so i have to be careful not to injure myself- that is a little tough because i am on the clumsy side. also, any infections that i get- such as sinus infections,etc. need to be addressed as soon as possible. i used to think that this was due just to the chemotherapy, and what it did to my immune system. this is partly the case, but that old lymphatic highway is congested now, so that is the other part.

this is just an example of being your own best patient advocate. knowing your body, and what is best for you. recently,  i had a conversation with a friend of mine who is also recovering from breast cancer. she said that she is regretting a major decision that she  made  regarding her treatment. it was a tough call- her doctors could not agree on a particular part of her treatment. in the end, she just had to make the call and go with it. after the procedures were over, two other doctors came out and said that she should not have made the decision that she did. it has not been a good outcome for her, so now what? well, sometimes you just have to make a decision, run with it, and not look back. i told her that all we can do is research the problem, get several opinions, and choose what we think would be the best treatment for us.

i will use this as an example. when i got my RAI- 131 treatment for thyroid cancer, i got a monster dose. that was what the radiologist ordered, and because my thyroid cancer had spread to my lymphatic system, and a couple of the tumors had broken open, i went with his recommendation. now, six years later, the effective dose has been proven to be much lower than the dose that i received. there are some people, though there is no firm research on this, who claim that the RAI-131 may have some link with breast cancer.  i do not know exactly what caused my breast cancer, five years after having thyroid cancer. i do know that they are somehow related, but this theory has not yet been proven. do i regret the decision that i made six years ago about having the large dose of the I-131? good question. i used the information that was available to me at the time, made my decision, and ran with it. hind sight is always 20/20.  the radiologist made the call on what he thought was best for me, and at the time, i agreed with that decision.

my friend that i was talking to told me that she has to let her" bad treatment decision " go and move forward. that is all that any of us can do, ultimately. just make our best decision, go with it, and move forward. this is easier said than done, though. as far as my decision about the I-131 goes, i might just give you a different answer about that monster dose- depending on when you ask me about it.

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