Wednesday, October 18, 2006


I love the reflective quality of water. Sometimes it's a clear image and sometimes it's distorted and almost like finger painting. I love to finger paint. I haven't done that in ages. Maybe I'll give it a try soon. I've been doing a fair amount of reflecting myself. I am well aware of my good fortune at so many levels. Perhaps what I fear more than anything is that I will stop expecting improvement. I have no reason to expect that. I have had quite a bit of improvement. The first thing that started me thinking about expectations today was when I was at physical therapy. This latest round is drawing close to an end. I have another session this Friday in the clinic and next Monday in the pool is the last scheduled appointment. That will be 15 appointments in a little over a month and some things are dramatically improved. The range of motion in my shoulder is so much better that I was able to swim laps this Monday which was huge. The therapist was running a little late so I swam until she got there and was able to swim 2 laps free style. She showed me some new exercises to do in the water and we discussed a routine which would incorporate swimming along with the exercises that would help the left leg lyphedema as well as the issues in my right shoulder. Today was mostly lymphedema massage in the clinic and the therapist is leaning towards not ordering a custom compression garment. My measurements are borderline. Definite improvement, particularly below the knee but not much improvement above the knee. The way we left it is the other therapist who will be working with me in the gym Friday and the pool Monday will be consulted but probably they'll discharge me and see how I do with just running tights and other compression I have on hand to use. When I asked what I should do if it got very bad again, it was encouraging to have the therapist say, don't let it get bad again. If you start to notice more back up with the lymph fluids, call and we'll get you in for a re-evaluation and decide if you need to start wrapping your leg and if we need to order a custom compression garment. I didn't know how it would work with this P.T. since they are at a hospital and only accept people with prescriptions from a doctor. Apparently now that I'm in with them, they can keep my file open and all I need to do is call if I need to come back. That helped me keep the optimism that I've started to regain, in an odd way. I've gotten used to being optimistic and then with each set back I feel like I start all over again, generally from behind where I was before. The good part about today was to realize that I had something in place to take into account changes and new needs and that I can come back before it gets too bad. Then I had to come home and check my mail and everything became muddy again. Not really. I shouldn't let it get to me and I shouldn't have requested the report. I think about so many people much younger than me that are fighting active cancer and comparatively, my anxiety and muddy issues aren't muddy at all. I'm doing quite well. That said, I can't help but wish I hadn't looked at my latest PET/CT report. The NP told me it was normal but in the back of my head it has bugged me that I didn't get a copy of the report. They always give me a copy of the report but this time, they didn't. So I just had to call medical records and request it which was a pain in the butt. Doing it that way means calling, getting them a written request and release, paying the separate company that handles those requests (just a few bucks) and then they mail it. If I was a doctor's office there wouldn't have been a charge and they would have faxed it or sent the CD right away but it's not that easy when you are the patient. The bottom line is no definite evidence of metastatic or recurrent disease. Well that's good except the prior scan didn't have the definite word in there so I didn't like that being added. I have a 1 cm hypodense area on my liver which wasn't there before but without appreciable FDG on the PET part, it's most likely a cyst. I have a tiny nodule in a lobe of my lungs with mildly increased FDG. I have unchanged mild FDG in inguinal region so that's still likely due to surgical changes. I have bilateral mild dependent atelectasis which I've never seen in a report before and when I looked that up online it's apparently more likely in smokers (the chronic kind) and the acute kind can happen when a lung collapses. I stopped smoking in 2001 but maybe it's some late damage. It could indicate bronchitis, etc. That's not that bothersome to me although I wished I'd know about it as that may explain my high CPR level which my rheumatologist is retesting in early November. That's something I'll run by him if it's still high. I have some sub cm lymph nodes in the thorax which showed up but were too small to adequately characterize at this time. That's most of it. A few little things which make sense in terms of tendonitis I know I have don't worry me at all. I am very fortunate and I know it but all of the sudden everything shifts slightly the water moves and it feels muddy to me again. If they had given me the report when I was at my clinic check up and explained it to me, I would be alright about it. Instead I called and was told that it was normal. I had my wound check with the NP after my doctor excised the lipoma and she did have the pathology report for me then but when I asked again if the PET/CT was okay she said, yes everything was normal. I didn't ask her for a copy then and now that I have a copy and don't go back until the spring, I'm not sure how I feel. I will see my dermatologist in November and my rheumatologist in December so depending on the CRP results, I guess I'll decide where to go from there. If that's down, then I'll assume the spike was due to an infection and that will also relieve my mind about my lungs. I don't know how to feel about a cyst on my liver that I didn't have before. Hopefully all will be clear in a good way soon. Either way, one foot in front of the other with beautiful fall scenery to give me a lift.

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