Those aren't chills running down my spine
I'm getting SOME answers finally. Went to Philly on Thursday and talked to the radiologist, Dr. Suh. He showed me the most recent scans of my spine, and explained the pain I'm having is from spots where tumors on my spine and in my pelvis are pressing on the nerves, effectively pinching them. The tumors are too close to the nerves to be able to use the Interventional Radiology technique of inserting a "hot needle"- one that actually heats up enough to burn away the tumor-because the tumorous material is wrapped around the nerves, and the procedure would kill nerves also.
Instead I will be going to Philly for the next 2 weeks for the more standard radiation treatment, meaning laying on my own special custom-formed cast, while the machine zips and buzzes around me, trying to zap as much cancer as it can while avoiding as much good tissue as possible.
The biggest side effect will be fatigue, with diarrhea thrown in for good measure. I will also have to forgo my beloved hot soaks for quite a while. Then again, if the radiation gets rid of the pain, I will not need to spend so much time soaking in a tub! Hopefully I will not need to be quite so doped up with pain meds either....
It also means that I will not be here for the next two weeks. My accommodations aren't completely sure yet. If I can get into Hope Lodge, it would be great, as there is no charge to stay there, and they have kitchen facilities so I could take my own groceries and cook my own meals, but someone would also have to stay there with me for the whole time; their policy is that you can only stay there with a caregiver. Of course, I would NEED someone with me, as there is no way I could handle all the cooking and shopping alone, let alone laundry and such; I can barely walk from the bedroom to the bathroom without being in exquisite pain, and I'm new enough with a wheelchair that cooking is a real challenge!
If instead I end up at a hotel, it is conceivable I could take care of myself for the majority of the stay, as breakfast would be at the hotel, and all my other meals I would eat at the Center. I really hate the thought of asking the Beloved to use up all of his vacation time to sit around a hotel room in Philadelphia with me, seeing as how the treatments only take up about 15 minutes of the day! Of course he is perfectly willing to go, and I bless his wonderful, big, generous heart for being so supportive. However, there is still a lot of work to be done to get us moved from the upstairs to the main floor, and who is going to do all that if he isn't here?
So, if I DO get into Hope Lodge, is it possible there would be a few friends who would be willing to take a few days a piece to explore lovely Philadelphia with me, in between trips to the Lazer Cannon Death Ray?
What is bothering me the most is that I thought the cancer was pretty much in abeyance, and it obviously is not. Dr. Suh tells me he will be irradiating my spine with two-thirds of the total amount of radiation that area can have for the length of my life, and that if this doesn't work, then there is no way to go back with radiation to fix it. If two-thirds doesn't stop it, then the other one-third isn't going to either.
So once again I find myself contemplating my own mortality. Often in my years as a medic, people would say to me, "I don't know how you can do what you do, I can't bear the thought of death," or perhaps "being around dead people." I've never been harmed by a dead person; never even been offended. No dead person has ever insulted me, attacked me, or even hurt my feelings with a careless remark. The living are the ones who can hurt us.
Even more than that, I have seen the ones for whom death comes as a blessing. We have all said it, one time or another, that so-and-sos death was actually a blessing, they had suffered so much.....well, if living a long time with the pain that I have had this past month is the alternative, I can see how death would be a blessing. I only pray that the doctors can find a way to break this pain cycle I am stuck in, so that I can enjoy whatever time I have left without agony. I leave that in the hands of the Spirit That Moves The Universe- it's too big for me to think about right now!
Instead I will be going to Philly for the next 2 weeks for the more standard radiation treatment, meaning laying on my own special custom-formed cast, while the machine zips and buzzes around me, trying to zap as much cancer as it can while avoiding as much good tissue as possible.
The biggest side effect will be fatigue, with diarrhea thrown in for good measure. I will also have to forgo my beloved hot soaks for quite a while. Then again, if the radiation gets rid of the pain, I will not need to spend so much time soaking in a tub! Hopefully I will not need to be quite so doped up with pain meds either....
It also means that I will not be here for the next two weeks. My accommodations aren't completely sure yet. If I can get into Hope Lodge, it would be great, as there is no charge to stay there, and they have kitchen facilities so I could take my own groceries and cook my own meals, but someone would also have to stay there with me for the whole time; their policy is that you can only stay there with a caregiver. Of course, I would NEED someone with me, as there is no way I could handle all the cooking and shopping alone, let alone laundry and such; I can barely walk from the bedroom to the bathroom without being in exquisite pain, and I'm new enough with a wheelchair that cooking is a real challenge!
If instead I end up at a hotel, it is conceivable I could take care of myself for the majority of the stay, as breakfast would be at the hotel, and all my other meals I would eat at the Center. I really hate the thought of asking the Beloved to use up all of his vacation time to sit around a hotel room in Philadelphia with me, seeing as how the treatments only take up about 15 minutes of the day! Of course he is perfectly willing to go, and I bless his wonderful, big, generous heart for being so supportive. However, there is still a lot of work to be done to get us moved from the upstairs to the main floor, and who is going to do all that if he isn't here?
So, if I DO get into Hope Lodge, is it possible there would be a few friends who would be willing to take a few days a piece to explore lovely Philadelphia with me, in between trips to the Lazer Cannon Death Ray?
What is bothering me the most is that I thought the cancer was pretty much in abeyance, and it obviously is not. Dr. Suh tells me he will be irradiating my spine with two-thirds of the total amount of radiation that area can have for the length of my life, and that if this doesn't work, then there is no way to go back with radiation to fix it. If two-thirds doesn't stop it, then the other one-third isn't going to either.
So once again I find myself contemplating my own mortality. Often in my years as a medic, people would say to me, "I don't know how you can do what you do, I can't bear the thought of death," or perhaps "being around dead people." I've never been harmed by a dead person; never even been offended. No dead person has ever insulted me, attacked me, or even hurt my feelings with a careless remark. The living are the ones who can hurt us.
Even more than that, I have seen the ones for whom death comes as a blessing. We have all said it, one time or another, that so-and-sos death was actually a blessing, they had suffered so much.....well, if living a long time with the pain that I have had this past month is the alternative, I can see how death would be a blessing. I only pray that the doctors can find a way to break this pain cycle I am stuck in, so that I can enjoy whatever time I have left without agony. I leave that in the hands of the Spirit That Moves The Universe- it's too big for me to think about right now!