the sun

Been thinking about the sun recently. I've even been letting myself get some bright sunshine full on my face for 10 or 15 minutes on these fall days and it feels great. I took this photograph at a family get together in Key West in March of 2002 and I love the way the sun is dropping into the ocean. I don't like the way our culture has ending up with tanning as a fashion statement. Tanning can be a fashion statement which results in non melanoma skin cancer for some, and metastatic melanoma for others. I'm perfectly comfortable with my skin being much lighter than it has ever been. I don't even like to see people suntanning on the beach and I can't stand it with young people. However, that said, I seriously doubt my melanoma had much to do with the sun. It could have but I don't burn easily and I don't fit the profile. What has made me start spending some time with the sun full upon me again, was finding out that I've developed a vitamin D deficiency which explains some of my pain. Although I'm on a major suppliment and may not need the sun, it has made me realize how much I enjoy the feeling of the sun on my face now that I have a reason to enjoy a bit of it again. After my melanoma dx, I started avoiding being outside, except in the shade, during the full sun times of day. At first I also wore suncreen and hats but the past 6 months or so I haven't done that but have avoided the sun. I haven't sat on my deck during the time of day when the sun would fall on my face in 18 months. For the past few days I've been sitting on my deck in the full sun for short periods of time and it's good for my soul. I don't need to do it for very long but I do want to get a little vitamin D the natural way. I'm sure I had plenty of vitamin D before my melanoma diagnosis because I was outside a lot and besides I never had any symptoms of a deficiency. Amazing how a deficiency in vitamin D can explain my balance problems and my bone pain. I will take the mega suppliment I've been prescribed but I'm also going to let the sun fall on my face for at least 15 minutes a day because it feels great and I think that's sensible.

My late September Photo

Not sure that this photograph is worth an entry of it's own but imagine if you will a dense covering of these little white flowers and that's what's on the horizon this fall if they will open up before a hard frost. They are just begining to bloom but will soon be covering my garden. I wanted to include this photo with my monkey off my back post below but blogger wasn't cooperating.

Monkey off my back

I feel like I have a monkey off my back literally and figuratively. I had an excision today of a "supposed lipoma" which was in the soft tissue on the mid part of my back. After it was removed, my surgical oncologist said that "with the naked eye, it looked like a run of the mill lipoma". Although I'll have to wait a while on the official pathology, that's good enough for me. My doctor is very experienced with melanoma and I will be shocked if this doesn't come back benign. After my doctor left, the other doctor finished up and I asked him if the lipoma could have been causing the additional pain I've had lately which I've associated with the new thing I felt on my back. I found the lump because I felt along my spine trying to figure out why I felt more pain. The doctor said that the lipoma wasn't wrapped around a nerve but that it was near a nerve bed and it was possible that when I moved it irritated the nerves. That makes sense in general since all along lying down has been the one way I can get comfortable so perhaps as this thing was growing it was annoying the nerves more and more. So that's one monkey off my back.

Number 2 was when I got home I had a message to call someone from from the rheumatologist's office. Turns out that my vitamin D levels are below the normal range and I am to start taking prescription strength vitamin D. How do you like that. A totally benign explanation for all the increasing bone pain I've had on the same day I get an explanation for some of the nerve pain. The rest of the lab work from the rheumatologist is still being done but that was so amazing to get that news right off the bat.

I took some photographs yesterday that I wanted to post of one of my favorite fall flowers. Tiny white daisy like flowers on a woody plant that is all over the place. I can't think of the name of the plant but I let it self seed and it comes up in dense almost bush like structures and starts blooming this time of year. Blogger isn't letting me upload a photo. I'll try one more time and then give up as I'm pretty wiped and may even shut down my computer since I'm taking the day off work.

Sometimes I wish that I could go back

Sometimes I wish that I could go back to a time when I took my cues from my doctors alone. If I had done that in terms of melanoma, I would not have had the convinction that I was having a recurrence. Granted, chronic pain and neurological symptoms were and are big issues and until they are resolved it will be hard for me to push melanoma out of my mind. I have always known that I had too many symptoms for them to be explained by melanoma alone. What my fear has been was that new problems would be lost in a sea of symptoms. I didn't see how I could turn off my concerns because how would I know if I was symptomatic? Each time my fear barometer has been hiked up a notch it has been due to changing and new symptoms. I've never found a new normal. I realize part of that has been my push to be as active as possible and if I look back over the activity log I still keep, when problems accelerate, I have had a longer walk or tried to move faster or something I barely registered has been different. If I hadn't read the PET/CT scans they gave me, I wouldn't have known that I do light up. I would have know the one time when they had to do comparison scans because the radiologist thought it was consistent with a tumor recurrence but even there I could have been fully relieved when later scans showed a reduction in FDG. The problem is I read about all the little issues on PET and then I read about how in some cases melanoma patients have spontaneous remission and then I go off into all sorts of side research. I almost don't want to see the latest PET/CT report. I want to take it on faith from the nurse'es call that it was normal. I know that normal means no increase in FDG uptake in the areas where I do light up which if FABULOUS. But there is something in the back of my mind that can't fully relax until after the surgery Tuesday to excise the lump off my back. If that's benign I have to find a way to move on. Move away from my excessive melanoma research. Hopefully the answers to the chronic pain and other symptoms aren't far away. Hopefully these problems will be fixable. The cooler weather is invigorating me and I feel like perhaps answers are on the horizon. But even if they aren't, I have to move on. I need to find a way to take my doctor's lead. My oncologist thought early on that I couldn't listen to my body. He didn't put it like that but when I asked the questions, How will I know . . . , he said let me worry about that. I think either way, I may have to do that. The either way is about allowing for what to do if vitamin D, thyroid or hyperglycemia don't provide the answers. The either way is about a life of pain management and doing the best I can within the framework of the cards I've been dealt. The either way is about it not being possible for me to have a full life if I keep being all or nothing. I can't count on being able to will the answers through the strength of my own personality. I have to release my feeling like I have to control the situation. I can't do that. This is beyond my control and I need to find a way to be grateful for what I do have. I think about people who are literally fighting for their lives and I know I am incredibly fortunate. I need to honor my good fortune by finding a way to live my life fully.

Optimism in unexpected places

I went to a rheumatologist yesterday not expecting much. I certainly didn't expect that he would spend three hours with me. It was unbelievable. I thought my neurologist was the most thorough doctor around but the rheumatologist was even more thorough. He is convinced that I have a vitamin D deficiency and said that even if I had been tested when I was getting a battery of tests from the neurologist that they wouldn't have picked up on it because they have recently changed the levels that are considered adequate (March of 2006 is when they changed). After I got home naturally I started researching this subject. Anyone who has known me for five minutes would expect that. I found out that people with vitamin D deficiencies are often misdiagnosed as having fibromyalgia. I found all sorts of articles about studies into unexplained chronic pain that ended up being a vitamin D deficiency. An article in American Family Physician - Vitamin D the Once and Present Epidemic sums it up well. He also thought I might have a specific thyroid issue that doesn't show up on standard tests and also that I might be hyperglycemic. Reading online I found all of these issue can be connected to vitamin D deficiencies. The FABULOUS news is that if this doctor's hunches proved to be correct, after the tests that are being done on me are completed, that would mean that I can be fixed. I even found a host of autoimmune diseases, including ones involving the T cells and other things I familiarized myself with when I was convinved I had paraneoplastic syndrome, can be connected to vitamin D deficiencies. It was interesting to me that the doctor pointed out that people with deep tans can be vitamin D deficient. Sooooo, I'm not going to start baking my skin. I don't know yet how it will be boosted because I'm not supposed to do anything until the tests come back. If this first string of tests doesn't show the abnormalities the doctor suspects, he has a whole other string of tests. It's so encouraging to me to have a doctor starting in fresh who has a ton of ideas and theories and is looking for answers that might actually fix me. Even better, I have discovered that I can be optimistic again. I am by nature optimistic. I was happy to get somewhat optimistic about the new physical therapy but this goes further. This gives me optimism that I might get back to my old life. I might once again be physically active. This doctor also said that my frozen shoulder on the right side needs P.T. immediately or I will be in danger of permanently losing range of motion. None of the other doctors even prescribed physical therapy for that shoulder even though they knew I couldn't reach behind my back on that side. The neurologist and pain specialist sent me to have PT to work on knots in my neck and shoulder, my recent scripts from my PCP were for P.T. for balance, back and lyphedema but this is the first doctor who precribed P.T. for my frozen shoulder. I am so encouranged and mentally am already hopeful once again that I will FINALLY get a diagnosis which can move me towards health. Even if it's not vitamin D, and or thyroid, and or hyperglycemia, I feel like this doctor may find an answer. At least I know that I have a doctor who is still looking for an answer. My neurologist would keep looking within his specialty but the amazing thing about this doctor is he's looking and considering all sorts of different areas whether or not they relate to rheumatology. Whooohooo. All this and a good PET/CT scan too.