Saturday, September 30, 2006

Off the beaten path

I went on another photo walk. Took my time, taking pictures along the way. Very pleasant. Since I'm not up to jogging or even speed walking yet, I thought I might as well go on the narrow unpaved trails that are part of the greenway trails near my house. Some of them are pretty rough going and I knew I wouldn't be able to maneuver the whole trail but figured I might as well do what I could. It was fun. I always get this illusion of being in the moutains when I go on the rough trails along the creeks because there are a lot of hills andI get a sense of being in the mountain forests I love. Silly because these trails cut through subdivisions with a thin veil of trees between the greenway system and the neighborhoods. When I was a child we didn't have the elaborate greenways but the neighborhood I live in now was all forest back then. My neighborhood wasn't developed until 1968. I was born in 1957. One of the trails in my neighborhood winds through the woods beside the creeks and goes all the way to the neighborhood I grew up in which is quite a few miles from where I live now. When I was a child I used to play in the little park down the street from my house. It wasn't a play ground style park. Just a little strip of trees with a creek in the middle and a grassy field at either end. I would pretend that I was in an enchanted forest when I played in the park. To an extent I still do that when I get in the woods, particularly on the dirt paths where I'm shielded from any houses. I can leave my ordinary life behind. I used to think a wiked witch had turned me into a human being and that I would be rescued and return to the land of enchantment. It took me longer than most children to discard my fantasy life. It took me even longer to appreciate the here and now, the reality of my ordinary life. My ordinary life is pretty damn good in many ways. I think a new goal may involve balance. The vitamin D deficiency which is being corrected explains my balance problems. That issue is already improving. I had to be careful when I was walking today, and I turned around at the part of the path that reguired agility. The issue was I needed to scamper over large rocks or make my way on a very narrow ledge with a sudden drop. Let me say I didn't scamper or maneuver the narrow ledge. I turned around and went back to the wide paved trail. That was pleasant too and I was able to cross a bridge and go back to the other side of the creek where the off trail path didn't have such a steep drop beneath it. I'm not interested in falling at this point in my life but if I do fall I don't want very far to go before I land. It was a very pleasant morning. I guess I'll try to be productive this afternoon. That could happen.

Thursday, September 28, 2006

Photo Walk

I went on a photo walk this afternoon. That's the great thing about fall weather. I was able to take a break from work and walk in the afternoon without it being too hot. There was only sporadic fall color, as it will be several weeks before more than a scattering of trees are changing colors in the NC piedmont but the process has begun which is enough for me at the moment. I drove the mile or so up the road to the lake instead of walking there as I used to. I had the bright idea that I would drive and park at the far end where the arts center is since I wasn't walking and I would start my stroll from that end for a change. It didn't really hit me until I was walking back to may car after my photo walk that those nice downhill steps were now being turned uphill. I'll call that a brunette moment of the 1st degree. It wasn't that bad but the whole time I was walking, I was so smug as I thought to myself: cool, I don't have to walk home, I just have to turn around and walk to my car. The only issue was that I was pretty tired by the time I got to the steps that lead up through the woods to the art center parking lot. Not a long distance at all but stairs and hills have become my weak point and I was mostly embarrassed because I felt like I must have looked about 80 as I slowly walked up the steps. Who cares. It's not like it's a competition. I'll either get stronger and better or adjust to slow. I'm sure I'll get over it. The hard part for me is no matter what I've weighed, what kind of shape I've been in, I've always moved fast. That is an adjustment for me but one I'm slowly but surely making, pun intended. I'm still ending up with a lot of photographs that get away. Perhaps the most interesting photograph I didn't get today was a humongous turtle sunning on a rock. I got it set up perfectly. I had to take it through the trees and get in just the right spot so the light was good and also be careful not to lose my footing and, drum roll, I snapped the picture right when the turtle grew tired of posing or perhaps was a little sun burned and dove into the water. Oh well. I will hopefully get better at this as time goes on. I am justifying taking another break from work this afternoon to post these pictures because I will try to work as much as possible tonight. I have physical therapy tomorrow morning and would like to be caught up enough so I only need to get a little work done in the morning before P.T. I guess it doesn't matter since I'm sure I'll end up working this weekend. I am so lucky to be able to work from home and to an extent set my own hours as long as I get the hours in. I didn't mind driving to my office this morning to pick up some materials I needed because it was a pleasant drive. Hard to believe I used to make that drive every morning and afternoon. It's not that it's that far to my office as far as commutes go. I know plenty of people have well over an hour, sometimes two hour drives to work in rush hour traffic. It's only about my being so accustomed to being able to get out of bed and go straight to my computer and work off and on through the day and evening. I'm not sure with the chronic pain and neurological symptoms I've had for 16 months if I could have continued working full time, if I had to commute. I know there are plenty of people with worse problems than mine who have active cancer and somehow keep working under much harder conditions than mine. I have the utmost respect for people who can keep going even when it must seem impossible to. I often feel like a total wimp. I know I've mentioned this before on my blog but that's how I feel sometimes but it's counterproductive to dwell on it. I think it has to boil down to what I'm going to do with my good fortune. I am like a broken record but it keeps coming back to one foot in front of the other and trying to move forwards. It's about finding a new rhythm whether or not I get significantly better than I am right this minute. What I have right this minute is a lot.

Wednesday, September 27, 2006

Bird walks to come

I went on a walk this morning. It was a slow walk but felt good. I am going to have to start taking my camera with me when I walk. Being NED (no evidence of disease) is fabulous and I am well aware of how lucky I am. I have to find a way to live with the chronic junk I've had since a few months after my LND for melanoma and hopefully get better. I am starting a whole new P.T. set up and the rheumatologist is looking at various issues, having already identified one problem which is fixable, HOORAH! Walking this morning, the birds were everywhere and I wished that I had my camera with me. That will take the edge off how slow I walk these days if I can combine photograhy with walking. When I got home I did take a few pics of one bird on my deck. As long as I am satisfied photographing the birds which hang out on my deck through the glass door, I can at least get a little practice photographing birds. They are harder to capture than the flowers but it's worth the effort or rather will be if I can get better at it. I'll have to see what's hanging out at the lake near my house. I hate to drive to walk and my walks and runs around the lake were always part of my extended walk or run from my house. However, it's too far to make it to the lake on foot these days. It's only a little over 2 miles to the path that begins in the woods and winds around the lake but it's a good 5 miles and longer depending on the trails I choose to do the whole loop. That used to be my normal morning trail, even when I was pregnant 22 years ago, and I worked back up to that trail after my LND when I still had the surgical drain in. However, I have to accept the fact that I can't do that now, hopefully eventually I will, but not now. I can however, jump in my car and drive to the lake trail in about 2 minutes and walk to where I can see the lake and what's hanging out these day. I've spotted a blue heron there before although that may have been in the spring. I'll have to take my camera and see what I can find. Maybe I'll even try that tomorrow.

Monday, September 25, 2006

onward and forward

My checkup today went great. The tumor removed from my back was consistent with a lipoma and no maligancy identified was the magic phrase. It was well over twice the size when it was taken off from what it was a month before on the MRI which verified what I could feel. I knew it was growing pretty fast so great to know I had a fast growning benign tumor not a malignant one. Onward and forward.

Sunday, September 24, 2006

Cardinal posing for me

Apparently if I settle for photographing the birds through my bedroom door, they will pose for me. That's how I managed to get photographs of a baby bird. I got photographs of a mocking bird through my den door which also looks out on the deck, as my bedroom door does. The ones I took of the gold finch were through my kitchen door which faces the driveway; I have puple cone flowers (echanasia) on the other side of the driveway which lures the finches and butterflies. The humming birds like lantana but so far they are too fast for me to photograph. This group of pictures I took this morning of the cardinal worked out pretty well considering how fast he was moving. I need to clean the panes on all of my doors. I think about that everytime I photograph the birds because I can only use one or two panes as my window out since most of them have spots. My what lovely subjects I bring up on my blog. I could keep my dirty window panes to myself. I am so excited about tomorrow. I can't wait to find out that my lipoma was just that, a lipoma. Not melanoma, not liposarcoma, not any other nasty. Just an irritating lipoma that sprung up quickly and irritated nerves. I can't get over how much better I feel now that it's off. It's not like it has solved all of my problems but it has taken care of one of the newer issues. I suspect the vitamin D suppliments will take care of the other new issue which was bone pain. Then I can go back to the chronic junk I'm okay with. What bugged me so bad was that I had finally gained an equilibrium after almost a year from when the chronic pain and neuropathy symptoms began. I could live with that and had a pretty good perspective about it. What was hard for me was when a few months ago new sypmtoms began. We are supposed to watch out for new symtoms. The we could apply to everyone but specifically for a melanoma survivor. I know I was a broken record about fearing that a new problem would be lost in a sea of symptoms but I think that is a real concern. The goal with chronic pain is to stop listening to your body. Turn it off and get on with it. I did a pretty good job of that for a while. The problem was that when new problems began I needed to start listening to my body again. Hopefully now that the lump is off my back and the vitamin deficiency explains the balance issues and bone pain I can regain my equilibrium. It would be nice if the symptoms of peripheral neuropathy, lymphedema, and some of the ongoing nerve pain could get better but I'm not going to whine about that. It is what it is and I can live with it. I am so incredibly fortunate in so many ways and I intend to remember that.

Saturday, September 23, 2006

Back to the one who got away

The one who got away this time was a cardinal. I quietly followed Mrs. cardinal from a distance, trying to capture her with my camera. Alas, I need a telephoto lens that allows me to be just a little bit farther away. My new digital camera has a stronger telephoto lens than my old camera which I left on top of a mountain in May. Since my old camera was duck taped together it was no biggie to leave it on the mountain. Hopefully someone found it and took it so it wasn't litter. The place where I left it is in the area where the NC outward bound school is located in the western part of the state. I'm sure someone picked it up and either kept it or threw it away. My new camera has a built in telephoto lens and the option of adding on a stronger removable one but that's not in my budget for awhile. I have to buy a converter as well as any new lenses. I did manage to get my first fall leaves photo this morning. The pictures I've posted of my oak trees fall leaves are from several years ago. The photo in this entry of my dogwood leaves was taken this morning. The dogwoods are among the first to bloom in the spring and among the first whose leaves change colors in the fall. The oak leaves are still very green and lush. I can't wait for them to start changing. However, my hope is that I'll be stronger by then so I can gather them up and shift the leaves to where they are needed for mulch. I also hope I'll be able to do some major chopping. My current lawnmower is rather labor intensive when I use it to chop leaves or even to mow for that matter. I used to have a gas powered mower but when it stopped working I decided to go for a manual one. At least 90 percent of what used to be lawn is now garden, or at least a wild life habitat to put the mess I have at the moment in a kind light. I don't like the noise of my old gas mower or the hassle of maintaining it. However, at the time I bought a manual mower, I was in great physical condition. At the moment I not able to do much with it at all. This too shall change.

Friday, September 22, 2006

I hope the final word will come Monday

I hope that I will will find out Monday that my lipoma was a lipoma and nothing else when I go for my surgery check up. I have been doing oh so much better mentally and somewhat better physically. Finding a fixable answer to part of my physical problems was huge. Kind of funny that I'd be so thrilled to find out I have a vitamin D deficiency but the point is that it's something that can and is being fixed. I will even be glad if the other lab work the rheumatologist is doing explains the rest in terms of peripheral neuropathy, frozen shoulder, etc. As long as it's not lupus but that is not one he thought even remotely likely. The thyroid and/or hypoglycemia which would fit with the vitamin D deficiency are more likely. Both of those are probably correctable if I do test positive. Which brings me to my biggest fear. I have assumed the lipoma will come back as just that, a lipoma. I am basing that on my doctor saying "from the naked eye" it looks like a run of the mill lipoma, after the surgery. I am superstitious enough that it worries me to be too certain of anything. It will certainly be a shocker at this point if it turns out to be melanoma. Ironic because my gut has been telling me something was seriously off for over a year and I have been expecting bad news at every scan. I strongly suspected I had paraneoplastic syndrome and my body was attacking its self while trying to attack the melanoma cells. The problem was lately I've felt like I was losing. Ah the mind is a dangerous thing. Where my superstitious side plays in is I've been so happy this week and I'm afraid that's when the hornets going to dive bomb on in with the stinger. I feel like benign answers are lining up and to top it off, the lipoma looked like a lipoma after it was excised. I'm almost afraid at this point to become too optimistic and that's not me. I've always been great at optimism. I've also always had this slightly superstitious side and am a little fearful of jinxing myself which is silly. Murphys' Law, supersition, whatever you want to call it is just at the surface tonight and to hell with that. I'm not going to let it bring me down. I guess it's time to stop researching. Yep, I just couldn't stop myself from reading more. Digging up those cases with differentials. I know better. I know if I google with lipoma and melanoma and differential in the search string, I'll find something to make me worry. Stupid, stupid, stupid. That's okay. Just a few more days and I'll get good news and then onward and forward. I may even start limiting my computer time to work and email for a while. It's a thought. I'll want to check the MPIP and blogs to see how everyone else is doing but I need to seriously limit it. Sarah was right when she suggested on a comment a few days ago that I might try taking a few weeks break from the boards. I know I should do that. For one thing my eyes are giving out on me. Between work, the BB, blogging, and email not to mention reading and TV my eyes are being asked for a lot and they are failing me.

Thursday, September 21, 2006

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.

Tuesday, September 19, 2006

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.

Sunday, September 17, 2006

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.

Thursday, September 14, 2006

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.

Tuesday, September 12, 2006

wooohooo normal PET/CT scan

Woohoo, good news! I had a normal full body PET/CT scan. That definitely lowers my tension level about the lump removal next week. I am so happy to hear back from the NP and know that everything looked good on the scan. Nice to get some definite good news as opposed to the maybe kind of news I sometimes get.

Waiting is no fun

I am sick of waiting but I understand these nurses and doctors have to prioritize. No matter what did and didn't show up on my PET/CT scan, my knowing about it isn't a top priority. I am coming in anyway on September 19 to get the lump off my back. I will be so glad to get at least that particular monkey off my back. I wouldn't mind so much that the NP didn't call back if I thought they didn't know anything yet. I know that my doctor and the NP can look on their computers at the slides as soon as they are done and that they get the radiologist's report by the same day or early the next. I waited 5 days to call so I know that they have the report. I'm not even comforted by the thought that they would have called if something showed up. That's not how it works. Normally I have an appointment right after a scan (within a few days). When I don't and I call the NP, sometimes it takes longer not less time for me to hear back if there is an issue. As my mother always said, you pay a high rate of interest on borrowed trouble. I am trying very hard not to borrow trouble.

Sunday, September 10, 2006

Cool Mornings are a blessing

I love cool mornings. Maybe if we had a longer winter or a shorter summer it wouldn't be so exciting to move into the time of year when we have cool mornings but as it is, I rejoice in the slightly chilly air. It's nice to have the option of going on a walk a little later in the morning too. In the heat of the summer here the only decent time to walk is before 8:00 am and I'm not an early riser anymore. I used to be. I went years where sleeping until 6:00 am was good and I was often up by 5:00 am or earlier. Now I frequently sleep until 7:00 am and it often takes me several hours to feel like doing anything. I hope we have a long stretch of time where I can open the windows and not use heat of air conditioning. That's my favorite time of year. It's more than one time and generally falls between seasons. I really ought to plant lettuce in my garden boxes. They won't take much prep work. I could dig out a little compost from my untended heap, mix it in and I'd be set to go. Although I'm not actively composting any more, underneath a big pile I throw leaves and the occasionaly clippings on, I am please when I run a shovel underneath that there is rich black broken down compost to add to my boxes. At least that was the case this spring when I did plant a few things. Even something small like planting lettuce is a sign of hope for new things yet to come. I was pleased to note, when I walked up to my garden boxes yesterday, that I had some volunteer broccoli and kale plants. I generally let a few plants bolt and voila, they set seeds and I have a volunteer garden. I should have some volunteer lettuce also but I want to plants at least one box with mixed types of lettuce and another with spinash. Now that I think of it carrots, radishes, cauliflower and a few more broccoli and kale plants would be good. I love thinking about something besides melanoma. In many way melanoma has replaced gardening for me. Weird as it sounds it's true. The time I used to spend gardening as well as with physical activities (running, swimming, etc.) is now spent researching melanoma. It's almost become an addiction. I don't feel like I obsess that badly about my own situation but I do tend to keep gathering information, and to what end? I already have a pretty good idea of what my options would be if I have a recurrence. I keep thinking that in time I'll move on to other things but that doesn't seem to be happening. The hardest part for me is that my situation keeps changing. I don't think every little thing that happens to me signals a melanoma recurrence but I am having trouble turning off the voice which is screaming inside of me, this isn't right. I have always had good instincts. I have always known when something big was going on that couldn't be ignored. Even with my nodular melanoma which was on my hip for decades, I knew something wasn't right with it. I had such a bad experience going to a dermatologist when I was pregnant who dismissed it as nothing because it was symmetrical and made me feel dumb that I swore off dermatologists but even so I knew something wasn't right. When I had an ovarian cyst, I knew I didn't have the flu and I got the tests I needed to end up having surgery to remove a fast growing cyst in the early 1980s. Fortunately that was benign but it was huge and would have been a problem has it not been taken care of. I knew when I had endometriosis that I wasn't just PMS ing more than most people and when I had laporoscopy laser treatments it turned out the out of control endometrial tissue had bent my falopian tubes into v shapes which was why I wasn't getting pregnant. Fortunately, that time they could be lasered off and I conceived my daughter. I have that same kind of feeling now. I know something is seriously wrong with me and it's different and changing. I don't know what it is. Hopefully it's not melanoma but it's SOMETHING and as long as I can, I will keep pushing for answers. As long as I do that I won't become depressed and hopefully I will be thinking more and more about gardening and less and less about melanoma as time goes on.

Saturday, September 09, 2006

I went for a walk today and they weren't after me

I went for a walk today, wooohooo, first one since Monday and I did okay. I was distracted from the fact that it wasn't that easy to walk when I noticed a code enforcement truck parked in front of one of my neighbors, whose house is behind mine. This was the same neighbor who called to complain about my composting set up attracting mice almost a decade ago. Back then I had a well maintained garden and a productive and neat composting set up and the city inspector basically commended me on what a good job I was doing of re-using my garden waste and kitchen scraps. At this point I'm not even bothering to try to continue composting other than big leaf piles with a few clippings periodically thrown in. My habitat garden gets wilder and wilder and is best viewed in close ups of individual flowers except when there is a lot in full bloom. I was relieved to get home and find that there wasn't a notice stuck on my door saying - WEED OR MOW by order of the City of Raleigh code enforcement division. Perhaps they did come by but couldn't maneuver through the gates on either side of my back garden and for that matter couldn't fit their truck in between the dinosaur azealeas. Sometimes my garden is too wild even for me and I have a high threshold for wild. I have to remind myself that even when I had more energy for weeding and working in my garden that certain times of year make me wonder if I'm going over the top from habitat garden to abandoned yard. Then the seasons change, new plants flower, winter does it's major weeding job. Generally in spring I'm amazed that I ever despaired of my garden and it's not til late summer that I start to wonder if the city enforcers will be sicked on me by my neighbors. Then fall comes and the little white daisy like flowers are everywhere and the marigolds continue blooming as the grasses die back and the gerber daisies will sometimes get a second wind before they are hit by a strong frost. Sometimes my irises and lillies are confused by the cold then warm then cold then warm weather we often have in NC and will bloom again in late fall and somehow still bloom in the spring. The fall leaves also dazzle and distract me from so much left undone. Hopefully I won't let it get to the point where the city enforcer really do have to give me a hard time. In general, I suspect they want to leave someone like me alone who is really trying to be environmentally sound as opposed to people who have waist high grass that attracts mosquitoes and little else. Then again the waist high grasses are also environmentaly sound. If people would only mow twice a year they could end up with mini meadows in front of their houses instead of the uniform little yards most people seem to go for around here. Sometimes I see the benefit of having a uniform little yard. If that's what I had then I could occasionally pay someone to tidy me up but as it is I really can't. I'd have to find someone I could walk around and point out what's weed and what's plant and what to pull up and not pull up and it would cost a fortune. I was planning on waiting to see if anyone calls me about my PET/CT scan which is doubtful. Usually I have an appointment scheduled right after a scan or I have been told to call the NP for the results the day after a scan. This time I didn't have any instructions about the scan but I am scheduled for the lump excision (supposed lipoma) on my back September 19. I had originaly thought I would just wait and see if they called and if they didn't I might call medical records and see if they will fax me the report. I don't want to drive to Chapel Hill and pick it up if I can avoid it but I am more impatient to know something than I thought I would be. I'm also not sure if they will call if something shows up. I'm already scheduled to have the issue on my back removed so they may not want to call and say it lit up if it did since the final determinant will be the pathology after the excision. If my groin lit up more than the last scan, they may want to wait and discuss that with me when I'm there because I'm coming anyway for surgery. I'm not even sure they'd call in advance of the planned excision if something new lit up. Rather than agonize over all of that, what I should probably do is call them Monday. A plan is always good even if I change my mind.

Friday, September 08, 2006

Reminded of my breadcrumb trail

I was reminded of my breadcrumb trail when I was at Ace yesterday and saw bags of the river pebbles I hauled 600 lbs at a time to my house 6 years ago. The bags weigh 50 pounds a piece and I was told 600 lbs was max in terms of my cars suspension. It took quite a while to get 10,000 pounds home which was what it took to pour the trail from curbside in front of my house up and around and through the back garden. I knew when I did it that it was temporary which is why I called it a breadcrumb trail. I didn't dig or grade or do the things that would be necessary for a more permanent path. I know I talked about this in one of my blog entries before my first blog crashed but I think about it whenever I see river pebbles or when I'm in my garden and even the big stepping stones are starting to disappear in a sea of earth and plants. Everything is temporary. Even a carefully graded path would need to be replinished over time or at least the kind of path I made would. The most permanent seeming structures are only permanent in a finite way. I could still recreate my path with time and hard work for very little money. If I started digging in the areas where the pebbles and larger rocks which came from cultivating my yard as I turned it into a garden, I would have most of the material to lay a new path. The stepping stones are still there. Maybe that could be a physical goal for me. The goal could be for my body to be rehabilitated to the point where I could salvage my breadcrumb trail. It's not hiking from Georgia to Maine or the Appalachian trail, or running a marathon, or doing an outward bound trip. It's still a huge goal in terms of where I am now. I need to start forming new goals. I feel like my fatalism of late is unacceptable. I wan't depressed or sad or unhappy but I was growing increasingly fatalistic and I don't like that. One of the main components of my personality has always been an undying glimmer of hope no matter what the situation. After P.T. yesterday I am once again getting back that glimmer of hope that I can at least find a new normal which will include being able to do some of the things that I love. Maybe I won't be able to dig my trail again but I can have that as a goal for now and then as things go along, if necessary, I can adjust my goals to my situation. That's the important thing. If I can stay flexible I can remain optimistic, if I get rigid I may break and I'm not going to do that.

Thursday, September 07, 2006

Finally something positive . . .

I am so happy to finally have a positive health related experience. The physical therapist at the outpatient hospital clinic was great. For that matter the P.T. I was going to before for deep massage, breaking down scar tissue followed by heat, and estims at the end of the session was great too but she was out of network. This is a hospital, in network clinic which is prescribed by my doctor and which will be paid for by my insurance, whoohooo. This is my second P.T. and it's 2 for 2. Why do the P.T.'s seem to get it so quickly when they pain docs don't. I just don't understand. Maybe it's the hands on issue. For whatever reason, I feel like the physical therapists have the best grasp of what's going on and understand the complexities and that it's not a one size fits all issue but rather a group of issues, some of which are acute and some less so. The only thing that worried me was she felt the lump on my back and thought at this point that it was getting into a muscle. That wasn't showing up on the MRI or discussed by the doctors which makes me wonder if it's growing. Hopefully not. The way it came up is we were trying to decide if I'd be up to P.T. a few days after the lump excision and she thought my doctor might have to go into a muscle. Please no! If he does have to get into a muscle that will be a factor in terms of how sore I'll be, obviously. One of the interesting things that came up was, when she took the measurement on my feet and legs for the lymphedema assessment, it turned out my right upper thigh is actually bigger than the left (surgery side). The deal is, my left foot calf and near knee are somewhat bigger, as expected, than the right. However, I mentioned that I could tell I keep more fluid in the thigh. Turns out that although it's obvious I have fluid in the left thigh, it's smaller than the right one. The reason is that my right quadracep has been built up to take weight off my left and my left quadracep is getting puny. That explains a lot. I know when I started running again after initially recovering from surgery, other runners in my neighborhood mentioned that they could tell I was leaning to one side. That conversation happened after all my problems began and theories floated around about how I was thrown out of allignment which was possibly part of where the neck and spine pain was coming from. Apparently, even from walking, which is all I can do now, I have built up the right muscle to compensate for the lingering issues with scar tissue and such on the left. Not sure what the resolution will be. Good though to have someone working with me on it in a methodical way. The plan is for me to go 3 times a week for 4 weeks. My only reservation was that was the plan with my first P.T. and we did that and then twice a week and then once a week but it never got me fixed. This is different since the specific issues she and another P.T. will be working with me on are lymphedema, balance and my back. It feels good, whatever happens, to be with someone who understands what I'm dealing with. I recall how good that felt with the other P.T. but hopefully approaching it from a different angle (balance, strength, moving the lymphatics, allignment) will have a longer lasting benefit than focusing on the deep massage did. The problem with my first P.T. experience is at first she helped me enough for me to hurt myself. That time she worked on the myofacial knots and it made a difference but I started jogging and before I knew it, I was all out of whack. This time the goal is functional strength and walking regularly. I am slightly better than guardedly optimisitic at the moment. I am close to truly optimistic. I like that feeling.

More from before the crash

I think I'll reprieve a few more of my, before the blog crashed, photos. This hollyhock was a much loved plant because it was amongst a very few that survived a big summer hail storm. It was quite a few years ago that I had a veritable field of hollyhocks and huge sunflowers when a strong storm whipped through complete with enormous hail (or is it hale). My garden bounced back but the hollyhocks and sunflowers were for the most part demolished along the lines of the bigger they are the harder they fall. This hollyhock didn't break under the weight of the hail and I enjoyed it. I still enjoy plants from the seeds it put down which have sprung up in new places in my garden. I was looking over my paperwork for the clinics I'm going to this afternoon which will hopefully help me get back to whatever level of physical activity is possible. It isn't that easy to read my handwriting even when I printed as neatly as I can. Still I think it probably does have the information they need. One thing that will be better about the outpatient clinics for rehabilitation is that I've been written a script for several different ones. They probably won't be able to do the all the evaluations in one appointment but this will be an initial evaluation to come up with a plan. The three separate clinics are lymphedema, balance, and back. To an extent that covers it although I'm not sure those are the divisions I would use. What I find frustrating with the pain doctors, yes I am a broken record, is how they see I have so many different problems and they jump to a diffuse pain diagnosis and look for conditions like fibromyalgia which I don't fit. At least we're past that one but the lastest is for me to see a rheumatologist which I'll do eventually. What I try to get across is that I have problems directly relating to the groin LND which are by and large manageable. The increasing lymph back up is annoying and the periodic nerve pain on the left leg can be quite uncomfortable but those issues alone wouldn't send me to a doctor. The shooting pain straight down my spine and the burning pain in my right neck, shoulder and arm are not manageable without strong medications. The low back pain that goes into my legs which is probably from the disc bulge they found in the lumbar can be quite bad but that alone wouldn't have sent me to a doctor. The pelvic pains are the ones I most fear relate to a recurrence but they aren't anything like as bad as the spine or right neck issues. The lack of coordination and balance, particularly when I'm tired is upsetting. The overall sunburn feeling, tingling in my feet and sometimes hands, and weird sensations are managed with neurontin. Without neurontin I wouldn't be able to shower. So there you have it. How any doctor could be confronted with that and come up with diffuse pain or generalized pain is beyond me. The doctor who probably gets it the most is my neurologist and he'll keep looking for causes within the specialty of neurology. He's tenacious but he isn't going to look for causes outside his field. Fair enough. The problem is he's the only doctor who has spent enought time with me to get it. The P.T. I saw for a while got it. However, she wasn't in a position to do much about it beyond deep massage, estims and heat. When it got to where I couldn't tolerate the estims and heat we decided to hold off awhile. Besides, since she was out of network for me, the cost became prohibitive. Hopefully my insurance will cover the outpatient rehab now that I have a script for specific types of P.T. from my PCP.

Wednesday, September 06, 2006

Messy it is . . .

Made it through my PET/CT scan today without any mishaps although I was surprised that I literally couldn't sit up on my own at the end. With other scans I've been bothered by how unsteady I was. I even built up a guess that they saw something after one PET scan based on the technician helping me up and being solicitous. This time, no one rushed to help me but I had to wait on them to sit up because I couldn't do it on my own after lying there that long in one position. Oh well, it's a fairly small thing but it registered on my personal radar. I have been filling out a bunch of forms which the outpatient rehab clinic I'm going to tomorrow sent me. It is very messy. I have terrible handwriting and there isn't enough room to do a good job of providing the information they need but I'm sticking with the format they have and am going to give them the benefit of my messy handwriting. I'm sick and tired of going to the bother of printing out neat forms with attachments containing the facts in an easy to read format only to have the people I give them to seem taken aback, as if I'm somehow obsessive. That's not fair because most of my doctors have seemed fine with that technique but it hasn't worked well with the pain docs. So the rehab clinic will get incomplete information and it will be in my impossible to read handwriting. Maybe that will go over better and make me seem less obsessive. I never have figured out why providing complete information seems obsessive and to be fair only one doctor (my pain doc) ever said it was. The other doctors have seemed appreciative and have been nice about it. The pain clinic last week though burned me again about trying to be helpful when the doctor made a comment about my copious materials or something like that. What made me decide to stop trying though was when he said that he had originally thought he might do an epidural since the disc bulge could be painful but that after seeing that I had diffuse pain he didn't think it would help. I DO NOT HAVE DIFFUSE PAIN. I HAVE THREE problems all the time and a FOURTH some of the time. The whole point in supplying all that information was to be sure he got it. He didn't get it. All he got was that I gave him a whole lot of information that he didn't have time to read or that's my take on it. I give up. I'm not going to be able to keep trying to help the people that are trying to help me. Either they can figure it out or they can't but it's too frustrating for me to keep trying to make it easier to figure out.

All dressed and not time to go

I should have known I would be up early on scan day even though I've been sleeping later than usual lately. I had a choice of times for my scan and I chose 9:30 am since that means I don't have to leave here at 8:00 am. I have to allow extra time for rush hour traffic but leaving at 8:00 will give me plenty of time. Since I can't drink coffee and I woke up at 6:00 am, nothing much to do. I don't trust myself to be coherent without coffee. So I'll be incoherent on my blog. I can't use the extra time I'm up to get some work done because I'm afraid that working without coffee would be risky. Amazing how addicted to caffeine I am. I'm not as nervous as I was yesterday. I wonder if there could be a correlation between no coffee and not so nervous about the scan. There could be but I can't function without coffee. It's not debatable. With all the medications I take, I have to have coffee.

Tuesday, September 05, 2006

Nervy and I'm not Sure Why

Not sure why I'm so nervy. Decided to call it a day as far as work goes. I had intended to get a little more done before I saved to my work network but I was far enough along to decide that enough was enough until after my scan tomorrow. What I can't figure out is why the PET/CT scan tomorrow would loom as this dreaded obstacle to get past. It will be my fifth one of it's kind that I've had starting with the initial pre-surgery one I had in February of 2005. I should be an old hat at it by now. I think I meant to say old hand not old hat. I certainly feel a bit like an old hat, a slightly funky one. Perhaps a slightly aging beret with a colorful feather to the side. Yep, I'm getting silly. I used to collect hats. I still have most of my hat collection. I have some hats going back to the 1920s that were my Godmother's Aunts. An older friend who saw me perform my original songs wearing one of my funky hats, gave me one she'd saved from when she was a young woman in the 1940s. Then I have hats that were my moms and hats I bought because I thought they were neat. Along the winter hat line, I have a bunch of those stocking style ones in wild colors that a friend brought me when he was visiting a friend who worked at a hat store. My daughter asked me to please take one of the wilder of those hats off, when I picked her up from school in the winter because they were embarrassing to her. I think that's when she was in elementary school. I have a couple of hats that look like what you see Russian soldiers wearing in the 1920s or something like that except mine are decorative. Maybe I should start wearing hats again to give me a boost. Not sure if I have the pinnache at this point though to carry it off. When I was first dx'd with melanoma, I used it as an excuse to buy some fun summer hats but I rarely wear them. At this point I avoid being outside in the heat of the day and usually don't bother with hats. I love yarrow. The white and red yarrow are old photographs I took. At this point I have more yellow yarrow and only a little of the red and white. I'll have to look and see if I have any photos of my yellow yarrow. Not a great picture but I found one. Yellow yarrow it is. On that note . . . to be continued when I'm not bouncing off the walls. I still can't figure out why I'm bouncing off the walls. This scan tomorrow shouldn't have me so unnerved.

Knocking them out this Week

This is another week of knocking out the health related appointments. Tomorrow is PET/CT scan, Thursday is outpatient clinics including P.T., lymphedema and such, and Friday is my annual physical with my gynecologist. I shouldn't complain. When I think of people in tough treatments (radiation, biochemo, chemo, immunotherapy) my irritating stuff is mostly irritating. Just the endless appointments to get to and through. Work is busy at the moment but I did some catch up this weekend. That's one of the advantages to working from home, it's easy for me to work most days for at least part of the day. I had fun yesterday with BF. We went to a recently completed, natural ecosystem at a lake with trails, and a restored mill house that actually works. Don't you love it, a recently completed natural ecosystem. Anyone else getting the irony here. They have to be very agressive not to let non natural habitats take over. I couldn't help but notice the bamboo springing up in the woods. I don't think bamboo is indiginous to the NC peidmont. I'm sure it will have to be pulled up soon. Probably someone living closeby has bamboo in their garden and voila, there it is at the woods by the lake. To have an ecosystem that duplicates what was in an area before all the foreign plants are introduced you pretty much have to have a team of gardeners keeping out unwanted volunteers. I'm sure that provides needed jobs for students and others. BF and I had fun going for a slow stroll through the woods and then we had lunch at the farmer's market on the way home. I guess I better get back to work. It was getting very tedious and since I started work almost straight from sleep this morning, I needed a break. My scan tomorrow will blow at least a half a day with the travel time as well as it taking a long time for both the PET and CT pictures not to mention the quiet time beforehand while the radioactive sugar courses through my veins. I'm being just the tinsiest weensiest bit dramatic about it.