Thursday, November 30, 2006

Odd what makes me worry less

It doesn't make any sense at all but I worry less when doctors address up front some of my risk factors in terms of what's going on with me. I had a good appointment with the medical oncologist today. Always nice when a new doctor makes me feel better. I tend to be a little nervy about meeting any new doctor and am always relieved with it goes well. He started off pretty soon by addressing the fact that I am at a high risk for recurrence. It's odd how that would make me worry less but it did. As I've mentioned here before, I trust my surgical oncologist but sometimes the attempts to reassure me (both him and his NP) back fire. It's not their fault. Most people probably would be reassured but I am weird. I worry less when my doctors address some of the negatives up front with me. This new doctor was very compassionate as well as direct and I think it will help me a great deal to have his input as well as the follow up I already have. He did a thorough physical exam and on the face of it said I seemed fine. He wasn't concerned about the little things on the PET/CT I had done in September. He did say with all the adhesions in the groin that the only way to know there would be with a biopsy but that's pretty much what I knew. He said my lungs sounded fine. He has ordered a bone scan which I've never had as well as an MRI of the brain since it's been 15 months since I had one through my neurologist. I'll see him again in two weeks to discuss everything after they can schedule the scans once they get insurance approval. He doesn't know why the CRP test would be high and he did say that PET/CT is good for macroscopic disease but that none of the scans will show microscopic disease, which I knew. If the bone scan and the MRI are fine, I am going to try once again to move on. By that, I don't mean turn off the little voice completely but know that I've done all I can for now and beyond that I need to be optimistic that my body will keep fighting like it's always done.

Monday, November 27, 2006

"Know your body"

I recently read a comment on a cancer board that I'm involved with. The comment, know your body, is on the face of it a good one. I've seen this comment before and each time I'm a little torn. I'm sure that it's true, as is often stated, that most patients of any disease or disorder discover a new problem or recurrence first and bring it to their doctor's attention. It stands to reason that the person inside of their own body would be able to recognize changes and warning signals before a doctor would. I know that in the past I've always had good instincts. I've generally know when it was some nagging little something bugging me and when it was a symptom I should go to the doctor with. When I was in my mid twenties and had emergency abdominal surgery to remove a large fast growing ovarian cycst, I knew that it wasn't a normal stomach ache or virus. Fortunately it was a benign cyst but it was a necessary surgery because of how large it was getting. When I had endometriosis, I knew that the pains weren't normal menstral cramps. When my melanoma first popped up, I knew it wasn't a normal mole although I did accept reassurance from a dermatologist that it was nothing and left it for 20 years. Even there, I had a nagging feeling from the end of 2004 to the beginning of 2005 that something was wrong with me and I started to associate it with the long ignored lesion on my hip that I had been told was nothing in 1984. As it turned out that nothing was a very deep nodular melanoma. The problem that I have now is every instinct is telling me something is off but with the chronic pain and neurological symptoms I've had since a few months after my LND, it's impossible to sort it out. I'm so happy that my balance has greatly improved with the vitamin D supplements. That is huge. The balance issues were perhaps the scariest of any of my symptoms and to have that explained by a vitamin D difficiency is very reassuring. The bone pain which was new has also improved and that is a biggie for me. However, I am still left with this feeling of something being off which isn't being addressed. By that I mean something beyond the chronic pain which I accept as a side effect of having a groin LND. I am thinking about this more lately because of the CRP staying over 10. Oddly, I'd be less worried if it was extremely high since that would be more likely to indicate an acute inflammation or infection. It's not really about that. It's more of an instinct that I couldn't possibly explain to someone. I see the medical oncologist that my dermatologist has referred me to this Thursday. I'll still be followed by my surgical oncologist and have no interest in changing melanoma clinics but this will be an extra doctor. Part of what I want to discuss with him is blood work, as well as scans which keep showing a little something but not a big enough something for my surgical oncologist to want to pursue it, or that's my assumption since the NP said the scan was normal. I feel awkward because more than any of the data or scans what I'm concerned about it my sense of something being wrong that should be followed not masked with medications. I feel awkward because knowing my body is why I'm the most concerned and I'll come off as being paranoid if I emphasize that. The crazy part is I know I'm not paranoid. Any little thing that I can grab on to and be reassured by, I tend to grab on to. But a new doctor isn't going to know that. Oh well, I guess I should see what happens. As my mother often said, you pay a high rate of interest on borrowed trouble.

Saturday, November 25, 2006

Fall's Ending New Beginnings

I had a pleasant thanksgiving with my daughter, one of my sisters, and Bill. My sister flew home this afternoon and my daughter goes back to school tomorrow. I am taking everything fairly easily lately. I see the medical oncologist next Thursday and hopefully that will be a positive step for me in terms of feeling reassured that whatever is going on with me is just stuff and not related to melanoma. Not long after I see the medical oncologist I have a follow up with the rheumatologist I started with in September and I'll see what his take on my stuff is. Stuff, what a nice all encompassing word. I love the end of a season because that means a new one is coming. In a way, the end of fall heralds all that new growth which is on the way. Bare trees show the limbs and bark in ways that aren't obvious when leaf covered and before I know it, the buds and new growth begin. Of course winter comes first but I like winter too. I hope that we have a decent touch of winter this year but I also know enough to be careful what I wish for. It's a gamble here. Some years we barely have winter at all and others it's unexpectedly intense. The grassy green slope with the lone man on a bycicle, against the blue sky reminds me that I wish the city hadn't had the grass mowed so early this fall. One of my favorite things at Shelly Lake is the tall grasses with autumn seedheads waving in the breeze but this year it was mowed regularly and I suspect my taxes in a small way paid for that. The problem is the birds hang out in the tall grasses and the seedheads provide food but recently the grass was quickly mowed into a carpet. Oh well, it does have an inviting feel. A grassy slope always reminds me of my great grandparents farm. I was quite young when they died but I still remember rolling down the grassy hill at their farm. Funny the memories that stick with me.

Wednesday, November 22, 2006

All's Well in my universe

For today, at least all is well in my uiverse. I cooked my thanksgiving dinner a day early so tomorrow all I have to do is stick it in the oven. Took today as a vacation day and have been cooking all morning, BEFORE my daughter and sister arrive so I can enjoy their company and not worry about cooking tomorrow. Bill's coming too so although a fairly small group it will be pleasant and for me 4 is about the right amount of people to cook for. My daughter's plane is ontime and she said she'd be happy to go back for my sister whose plane is delayed. I've spoken to both of them on the phone so that's all straight. I took this picture of the cardinal having brunch this morning. As long as I can watch the birds eat I have something fun to do even if the rain has been prohibitive of any outside activities since yesterday. Off to the airport for the first pickup.

Sunday, November 19, 2006

Reading is a mixed bag

It's been two months since my rheumatologist did my initial blood work-up. It was repeated on Tuesday. On Thursday I called to see what the numbers were so I could let the medical oncologist I'm seeing at the end of this month know if the CRP stayed up there. I received a call from the nurse letting me know that my doctor would have to look at it before she could give me the results. I got another call saying that the doctor wanted to fax the results to my oncologist and that the CRP was still over 10. I made a split level decision to have them faxed to the medical oncologist. I've never seen the medical oncologist and my regular follow-up is with a surgical oncologist who specializes in melanoma and endocrine disorders and who is the director of the melanoma program at a large research university. I will continue seeing my surgical ONC but my next appointment with the melanoma clinic isn't until March, and that's with the NP. I guess I felt like, since my dermatologist had referred me to a local medical oncologist to get a consultation and work-up that would be in addition to my follow up with the surgical oncologist, I might as well have the blood work sent to him since I see him in less than 2 weeks. My regular melanoma clinic doesn't do blood work as part of their regular follow up. That's okay with me. I know all these clinics have somewhat different follow up for stage III melanoma patients. However, with my weird history I wanted a closer look, which is why I'm seeing the medical ONC. My history is weird because I had a nodular melanoma primary on my hip for over 20 years that wasn't removed until 2005 and I lived to tell the story. Something in my body is good at recognizing melanoma and regecting it or, let's face it, I wouldn't be here to write about it. My concern is that I do have some little issues on my lungs, thorax, and liver that are probably nothing but if they are something, I want to know as soon as possible. I also continue to light up in the inguinal region which is assumed to be from surgical changes, at this point. My surgical oncologist puts a lot of faith in the PET scans and uless something is cooking there, he isn't concerned, or that's the impression I've formed. My concern is that if I'm effective at fighting, something may be cooking but not be that dramatic on the PET scan. At the very least, I'd like to have repeat dedicated scans to measure the new issues that showed up which I wouldn't know about if I hadn't requested my last PET/CT scan. Normally I am given a copy of the report but this time I wasn't and never had a chance to ask questions. That's the reason for a consultation but over all, I do trust my main doctor and want to stick with him. Soooo, back to the blood work. My CRP has stayed high for two months but not in the range that my rheumatologist thinks is likely to relate to his field. It's more in the range to relate to heart disease or cancer, but of course may not relate to either. It's non specific. On the paranoid side I found this back, "Altogether, for first diagnosing AJCC stage IV melanoma, CRP is the superior serum marker when compared to the conventional LDH." I know that doesn't mean I have active melanoma it just means I have a hit on a serum marker which may mean anything. So back to the point of my title, Reading is a Mixed Bag, I found this: "In the body, CRP plays the important role of interacting with the complement system, an immunologic defense mechanism." So what may be happening is my body is doing what it's done all along. It's FIGHTING BACK. So what I need to do now is go on more walks and spend less time on the computer trying to figure out something I will never be able to figure out. It could happen.

Thursday, November 16, 2006

Fall's End

I love fall's end. There is such a mixture of images. Some trees are bare, the limbs against the sky, exposing the structure. Some trees still have some of their leaves adding color to the mix. I even have a few late storage building roses. I may not have a rose covered cottage but I do have a rose covered storage building. It's a rainy day and I'm waiting on my next batch of work. I want to go on a walk but seeing a tornado warning is in effect, I better not risk ending up in the emerald city. I doubt we'll have a tornado but you never know. The weather has been extra strange so far this fall. I like strange weather as long as no one is hurt. I don't think we need anything as strange as a November tornado. I do like the way it goes from being down right cold to being spring like. As long as we get a sure enough winter this year, I'll be happy. Last year was the first year in ages that we didn't seem to get much of a winter at all. A few snow flurries, a few nights with single digit F temps but that was it. Much of the winter was more like spring or fall. I know to be careful what I wish for. I don't want to have an extra fierce winter mostly because I'm not quite steady enough to risk walking on ice. It's odd to me how we're more likely to have ice storms than snow storms although in recent years, excepting last year, we had a few of both for a bunch of winters in a row. I had something happen yesterday that made me realize that tree climbing may be as unrealistic of a goal as rock climbing. I went to my water class and didn't feel like waiting with the hordes to exit via the pool steps. Therefore, I tried to exit via the side of the pool. I couldn't do it. I tried three time and I couldn't push myself up high enough to sit on the edge and get out. Woah! That brought me up short literally and figuratively. It never ocurred to me that I would be too weak to get out of the pool on the side. There I was feeling so strong because I had lugged pavers and rocks from my back garden to the driveway garden and I couldn't even lift myself out of a swimming pool. I am going to start doing some exercises to build strength in my triceps but even there with the few I tried I was astounded at how weak I was. In May of 2005 when my last drain FINALLY came out after many weeks of trying to dry me out, I was still able to do military style push ups. I stopped doing them because the small seroma I still had leaked out lymph fluids all over my carpet. My what a lovely image that is. Since then I haven't done anything close to a pushup because besides the chronic pain, I formed adhesions in the area around my lower abdominal muscle where the seroma was. That's one of the several areas that I worried indicated a recurrence because of the hard areas I had that got bigger. At least I got over trying to poke around in there and see what was going on. I don't have a clue. I poke around and it hurts and I worry so that's a no brainer, stop poking. Now if I could only stop poking around with my head. Not sure if I really mean that. I have reasons to educate myself about the cancer I have but I don't get any comfort from it. It's not even as simple as whether or not I find good or bad information. When I had my blood draw at the rheumatologist's office Tuesday the technician and I were discussing the CRP test and I mentioned that I needed to stop researching because it definitely didn't make me feel any better to read about that test with relation to metastatic melanoma. She said that you have to be careful about what you read because some information isn't reliable. That's not my problem. I know to check sources, dates, etc. and make sure I'm reading the same kinds of things that my doctors are probably reading. Hell, one of the reasons I'm reassured about my surgical oncologist is that quite a few of the studies, papers, etc. that I've read have him as one of the authors. However, the problem is that there are so many factors that get weighed in when a doctor sees a patient and those are the factors that I don't know about. My problem is feeling like I may not be getting viewed as an individual but instead am being fit into the particular study, etc. that the university where I'm seen is doing. I don't think it's that my doctor doesn't try to see me as an individual but he doesn't have the time to spend on me that I have and I don't have the knowledge or experience that he has. Hopefully my CPR will be down to zero and I can assume that I had an infection I didn't know about during the first blood draw. That in combination with the consultation I'll have in a few weeks with the medical oncologist should help. I think I'll have a charlie brown christmas tree this year. The last photo in this blog entry is one I have all picked out in my front garden. I've been letting volunteer trees grow in spots I don't want mature trees of that kind but I see each new one as a possible christmas tree. My days of lugging down 20 or so boxes of ornaments from the attic, and buying the largest possible tree that will fit in my living room are over. But I can't skip the decorating altogether so I'm growing an assortment of trees that I'll use in the style of Charlie Brown with his funky little tree overloaded with ornaments.

Wednesday, November 15, 2006

Garden Guards

I had a blast setting up my new/old driveway garden. Little did my unsuspecting neighbor know what he would start by stepping on my grave before I was in it. That's what it felt like to me even though I knew he didn't have a clue. Part of why I'm so defensive about all my little stone, and other hard material, surrounded mini gardens is because they are all me. A good friend built my year round boxes, greenhouse, storage building with garden boxes in front and I love having those areas for gardening. However, the ones that I lovingly created by myself are the little stone circles which have had a variety of plants through the years. At one point I had pansies and other annuals until I moved towards self seeding wildflowers. Yesterday I moved some of my garden ornaments into my driveway garden. The garden guards include a metal hummingbird, a couple of frogs and a cherub. Even if the stepping stones, granite, marble, sea stones, river rocks, etc. are covered by the emerald carpet which grows like crazy in the spring, I know my froggies and hummingbird will bite back if a lawn mower gets in there way. Today my work break will be a return to the water classes I'm doing at the YMCA. I am starting to feel all the gardening I've been doing and want to be smart about it. I also don't want to lose the momentum I started in terms of going to water classes which are a good total body workout. I had my bloodwork done yesterday at the rheumatologist's office. Hard to believe that it's already been two months since I had that done. During that two months I had the benign lump removed from my back, started the vitamin D suppliments the rheumatologist prescribed which have helped enormously with balance and bone pain, and completed the hospital physical therapy which has helped build my confidence so that I could not only go nuts when my garden was threatened but I could also do something about it. I sound so melodramatic. Ewwwww, threatened garden, garden guards, too silly! The blood test I'm most interested in is the CRP. I know the vitamin D levels are coming up due to the balance improvement in particular. Hopefully the CRP level will be zero. The CRP is the one which is sometimes high with people who have metastatic melanoma. I'm not overly worried because it's also high for people who have bronchitis or a host of other things. However, I'm glad I'll be seeing a medical oncologist for a fresh look at the whole picture. As I've said before, I don't want to change doctors, I have confidence in my surgical oncologist at UNC but I think at this point it will be reasurring to get a fresh look from a medical oncologist and that's just around the corner on November 30.

Tuesday, November 14, 2006


Something good came out of my tantrum on returning home from my grandmother's funeral. I realized that having my relatively new young neighbor dismantle my butterfly garden, in his enthusiasm for neatening up our inbetween strip of land, was a symbol for me of my disability. I am not going to pretend that I've ever been a neat gardening. I haven't. The only time my garden has been neat has been when I've had someone in my life, living in my house, who took care of the tidy part of gardening. However, I've always had a big part in adding magic to my garden. Part of the magic was 10,000 pounds of river pebbles that I hauled 600 pounds at a time in my car to create a breadcrumb trail. Part of the magic was marble and granite chips I hauled from Willmington having selected ones I liked out of a discard pile an artist had on the curb of his house from progects he was doing. Part of the magic were seashells and ocean stones I hauled in my trunk from beach trips. These hard materials blended in with the flowers, ornamental grasses, perennials, mulch and soil in my garden. Having one little garden area dismantled by a strong young man was symbolic both of how much I'd let my garden go, represented by my neighbor thinking a garden was a trash heap, and was symbolic of how fast magic could be replaced by a manicured lawn. That's why I moved fast and shifted stones and pavers from my back garden to the area that had been dismantled because I'm not ready to give up my kitchen window view of butterflies and songbirds who don't care whether it's tidy or not as long as there is something for them to eat. In order for them to have something to eat, I needed to enclose the wildflower area so it didn't get mowed down for good and seeded with grass by a well intentioned neighbor who wanted an easy mowing swipe as he kindly mowed my part of our in between area. What he didn't realize is that I always hoped that the entire area could become a garden and no one would have to mow but at this point I don't need to add maintenance issues but I do need to keep certain parts of my garden intact for the wildlife as much as for me. The best thing to come out of all of this is that I realized I'm so much stronger now. The last time I tried to do any heavy gardening, I was barely able to walk for months. Yesterday, I had my second day in a row of garden work. I not only raked my driveway leaves into piles to be chopped for mulch, I also raked my neighbors leaves since they were from my largest oak. Since he saw a touch of my temper when I know he was trying to do a good deed, I thought I should tidy up the parts he can see and get my leaves out of his driveway. I am having a brief lull in work so it's the perfect time for me to do this. The weather is also cooperating. I can't believe how much my balance has improved with the vitamin D suppliments. I had a few minutes where I even considered getting up on my roof to clear off the leaves there and in the gutters but I remembered the promise I made my daughter when she went to college in 2003 which was before my melanoma dx and the problems I've had since the LND. She had made me promise I'd pay someone to clean my gutters because she had witnessed my rather unprofessional style of doing it in the past and was afraid I'd fall and no one would see me for a long time. So after all the leaves have fallen I'll call the guy who I've been getting to come take care of that particular chore. As to the rest, I am so encouraged to feel like I'm doing well enough to take care of it myself, a few hours a day until winter arrives and hopefully it will be done. The problem with my garden is that even if I could afford to pay someone to tidy it up, I'd never find someone to do what I would want. I can't say, these seedheads need to stay put so the birds can get what the want and the rest can drop down for spring flowers. I can't say, these are weeds that need to be pulled and these are volunteer plants that I want to keep. I guess I might be able to find a horticulture student at NCSU who wants to earn some extra money helping me out but I can't really afford it and I want to do it myself. I think I may actually be getting strong enough to where I can do it myself. I have to be careful since I still have to take a lot of medications but as long as I don't take extras to deal with the garden work, I think it's okay.

Monday, November 13, 2006

Didn't know I still had it in me

The first thing I noticed, returning home was how colorful the trees were. Most of the trees in the mountains have dropped their leaves but we still have a week or so left, where I live, to enjoy the color. I fear my language was as colorful as the leaves once I had a chance to take in the full view on returning home. My daughter, one of my sisters and my ex-husband were privy to my outburst as we had gone to the mountains together and my sister's plane wasn't taking off for several hours. I would like to say that having cancer has given me the perspective I hear people talking about. You know, that perspective where you realize that the small things don't matter and you focus on this new improved life where you relish the important stuff and let the small stuff go. No such luck with me. I do relish the important stuff but I can still be as petty as I ever was if my sentimental nature gets crossed by the unaware. So here's the deal. I have a young man living next door to me on the side where there's a strip of land in between the two driveways. He's a relatively new neighbor, especially considering the fact that the neighbor on the other side of my house has been in her house since 1969 and I've been in my house since 1984. My new neighbor is a nice young man almost young enough to be my child. When he first moved in, I took care of the strip of land in between our driveways because I was used to doing it. The woman who lived in his house before him was elderly and I tried to do little things for her. The property doesn't have clear borders and is awkward because most of the top part is my property and most of the bottom part is his. There isn't a straight line and the border isn't clear. At the top of the driveway I had two little garden areas, although at this point it's a stretch to call them gardens. The rocks, granite, sea shells, and marble that circled them were mostly covered by the "emerald carpet" I had planted years ago, and there were lots of weeds and grasses mixed in with the purple cone flower and other plants within the border. As I neglected the garden area more and more, my neighbor started doing the rounds on his riding lawnmower. I did mention that there were rocks and such that might hurt his mower as I knew he was riding over my garden parts only steering cleer of a volunteer sour gum tree and the purple cone flower. He said it wasn't a problem and didn't get the hint that I didn't want him up there. I didn't press the matter as there were enough flowers to continue to attract the goldfinches, butterflies and humming birds that I watched from my kitchen window. It also made it easier for me since I didn't have to pull weeds or do my rounds with my old hand mower. However, I wasn't prepared to return home and see that he had not only removed the trellis between us but he had also removed all my rocks, marble, granite, and sea shells. The trellis was a mess and I was happy to see it pulled up. He had asked me about that since it was on my side of the property line. I said sure, pull it up, it's warped and I let a neighbor put it up on my side a long time ago when they were trying to close off the fences in the back for their dog. What I didn't realize was that when he pulled up the trellis and the clemantis, jasmine etc. on his side (that was sad that he trashed beautiful vines but that was none of my business as they were on his side) that he would also pull up my rocks, etc. and mow down most of my flowers before they had time to set all their seeds for the spring. He was still outside demolishing everything in site with that slash and burn style of maintenance when I returned. When I told him I wanted my rocks etc. for my butterfly and songbird garden back, he said he could put them in my driveway. I said, no, put them back where you found them, PLEASE! When I woke up the next morning and saw that he hadn't tackled that project yet, I did get a little perspective. I realized most of the bits and pieces of a border I had lovingly laid were at the bottom of trash cans filled with debris. Here is the good news. I found physical strength I didn't know I still had. I dragged stepping stones and rocks from my back garden, in areas where the butterfly flowers were taking over the paths, and created a new garden area in what used to be two. That way there is no need to mow in between the two. I can fill in by planting new wildflowers in the spring and I'll still be able to watch the birds and butterflies from my kitchen window. The second picture was taken last night after I finished setting up my new garden area and discovered I'm not as weak as I thought I was. That's the most physical activity I've done in years and out of a major annoyance came a feeling of victory over my compromised body. I didn't know I still had it in me to create a garden out of a mess. Depending on work today, I may even tackle the leaves, moving them to places where they are needed for mulch. Good thing I love leaves as I sure have a lot of them.

Sunday, November 12, 2006

What a great laugh

This old photograph of my grandmother made me remember what a great laugh she had. She laughed freely and often which is such a great quality to have. My mother died 16 years ago but she was made a part of the Friday service in such sweet ways. My mother's youngest brother talked about the trip out west that my grandmother took as a new mother with her husband, Carver Young, when they intended to move to California. Her husband died in Duncan, Arizona and she was close to death herself at one point. She took a train from Arizona with her baby, my mother, to West Jefferson, NC. She was despondent and wanted to give up but my mother, a three month old baby sitting on her lap, gave her the will to live. My uncle said my mother was an angel riding on her mother's lap on that train trip in 1924. It was very touching. Years later, after returning home as a young widow with an infant child, my grandmother remarried and had my mother's younger brothers and sisters. It meant a lot to me that they not only included my mother in the service but also her father who died in 1924. All of my grandmother's grandchildren and great grandchildren gathered this weekend in Boone, NC for what was truly a beautiful celebration of a remarkable life. My mother was a part of that celebration although she was the only one of my grandmother's children who didn't survive her. I know my mother is greatful for what good care her brothers and sisters took of their mother. I think the laughter this weekend, as my grandmother's family gathered to send her off in style, was as much of a testament to her as the tears. I remember when the saying started going around that the family that prays together stays together got started, I always thought that should be that the family that laughs together stays together. Love, laughter, hope, guts, are all qualities I admire and at 49 I am able to recognize that my grandmother was filled throughout her life with those qualities.

Thursday, November 09, 2006

Fall has fallen

Thought I'd post one more fall photo. Not sure what settings I used with my camera but this one ended up looking almost like a painting to me. I took it a week ago along with others I posted from a walk at Shelly and amazing how much everything has changed since then. Hard cold rains have contributed to more and more leaves on the ground and less and less on the trees. Heading back up the mountain bright and early tomorrow morning to go to a large family gathering to celebrate the life of my mother's mother who died this week. There will be a funeral but in this case there is more to celebrate than anything. My grandmother lived close to 103 years. My mother's father died in his early twenties and I was named after him. My mother died at 65, over 16 years ago. I have aunts and uncles from my grandmother's second marriage and a bunch of cousins who have a bunch of children. Both of my sisters as well as my brother are flying in and my daughter flew home yesterday from college so she could go. She felt like we all do that this might be the last gathering with all the aunts, uncles, cousins, etc. I think it will be a joyous occasion in many ways as my grandmother had a long life and even at 103 she left behind a horde of people that loved her.

I had my dermatology appointment this week which went well. Never much to look at on my skin but my dermatologist is easy for me to talk to and talk I did. He has referred me to a medical oncologist who I will see at the end of the month. This won't change anything about my regular oncology follow-up which is with a surgical oncologist at a large research university who has a lot of experience with melanoma and has been involved with melanoma research into novel treatments. I like and trust my oncologist but I have a slew of little questions that I don't think have been answered and I'm concerned that my next appointment isn't until March and it will be with the NP. I'm fine with seeing the NP every other appointment but the timing was bugging me. I saw my ONC in September but so much of the appointment was spent on the issues relating to MRI's my PCP had done and the main thing that got done was I was scheduled for a PET/CT scan and surgery to excise a lump from my back. I had the scan and the lump was excised. My surgery check a week later was with the NP who gave me the pathology report on the lump which was benign and said the PET/CT scan was normal. She said I'd see her for my next 6 month appointment since the one I had a few weeks prior was with the doctor. They usually give me my PET/CT scan reports but this time didn't so after some agonizing, I ended up getting it from medical records. Lots of little issue that weren't big enough to be of concern yet. However, given my history and a blood test my rheumatologist did which showed I had a high CRP, I've found it hard to leave it there. If I had seen my ONC and been able to ask questions point by point about the scan and the other issues, I might well have been reasurred but without that opportunity I've continued to have to push away thoughts. Seeing a medical oncologist for a consultation is perfect. I'm not changing clinics, which I don't want to do, I want to continue with my surgical oncologist because overall I trust him but I am afraid of letting things go and later regretting that I didn't pursue these pesky things. The pesky things include my groin where the LND was, a 1 cm hypdensity on my liver with no appreciable FDG, a tiny nodule on my lungs with mild appreciation, and sub cm nodes in my thorax which are to small to adequately characterize.

There I've said it, those issues worry me mostly because, except for the groin issue, they are new and so far as I know I won't get another scan for a year as part of my regular melanoma follow up with my surgical ONC. I don't think they are anything that are likely to relate to melanoma but combined with the CRP blood test being 10.5, I want to ask questions about these issues and seeing a medical oncologist will hopefully help put it together. The CRP is a non specific test which can relate to inflammation. It can mean I have a harmless infection. It can be a signal for a host of things my rheumatologist doesn't think I have. It can signal cardio vascular disease. It can also indicate cancer and in terms of melanoma some doctors have written that it is sometimes an indication of metastatic disease with melanoma. Yes, I just had to google with CRP and melanoma in the string. It's also kind of like these precscription medications that say using this medication may cause everything under the sun but probably won't cause anything. Paraphrasing here. I'm not really all that worried but I'm not happy that my ONC doesn't do any bloodwork or get reports from my other doctors. I see my DERM more than my ONC but I don't have anything to follow on my skin.

My concerns stem from having at least a 6.9 mm breslow with 2.8 mm more removed during the WLE. My concerns stem from having a strange history where I survived nodular melanoma for decades before it was removed. I know my body does something right and fights back in ways that most people don't. I know that I am beyond lucky and I suspect everything will be okay but I've read too much to feel comfortable leaving all these questions I have unanswered. I don't want to kick myself if things start changing fast and I have wondered about things but not tried to find the answers. Hopefully I'll see the medical oncologist and he'll answer my questions and I'll be reassured. That's what I'm assuming will happen.

Monday, November 06, 2006


I walked five miles yesterday with Bill and made myself go to a water class today. I am so tired I feel like hibernating for a month. Well, duh. In August when things got much worse I wasn't even trying to walk around the block. Then I built up to a mile and occasionaly two to three miles tops. I did one photo walk which was between four and five miles a month ago but I didn't do much walking at all the next week. I went to P.T. but that was pretty much it. All my long walks have been with my camera. Yesterday, I didn't take my camera and we walked at a good pace until near the end when I had to sit down and rest for a minute. I made myself go to the waterclass today because I don't want to lose my momentum with that. I think the water is helping with my lymphedema but it's exhausting. Mostly from doing movements I'm not used to. I feel like if I stop, I'll never start again. I do have a sense of being at a make or break point. If I get any heavier, I'll never get back to my fighting weight. I could care less about the cosmetic issue. I think people look good at all different sizes and that side of things isn't important to me but I want to be at the right size for me. I have pretty much given up on my goal prior to the groin LND of doing a beginner rock climbing course. Considering how hard it was to do an indoor climbing wall with my daughter, in January 2005, a month before my melanoma dx; when I was in the best shape I'd been in decades, it's a little over the top to think I can rehabilitate to the point that an easy rock climbing course would be possible. However, maybe I could climb into my oak tree by say 2008. That's something I've never done although I've thought about it at various times since I moved into my house in 1984. My balance is tremendously improved since I've been on the vitamin D supplements so that deficiency was the reason my balance got so screwed up over the past year or so. That is great news. I worried about the balance problems I was having almost more than anything. Pain sucks but poor balance without knowing what was causing it was frightening for a variety of reasons. I am so greatful that a benign answer was found to that question. I bet my neighbors would think I'd lost my mind if they saw me sitting up in my oak tree one day. Maybe something that simple will be my new goal. I'm still recovering from the frozen shoulder but that got a lot better with P.T. and I have close to full range of motion back. I need to find my rhythm. I need to find a way to keep going without losing momentum. Running would be great but that almost seems more unrealistic than tree climbing. When I look back it seems like so many of my problems, particularly neurological ones started when I was trying to jog after recovering from the LND. Every time things have improved a little, I've tried to jog again and very quickly things start going down hill again. So perhaps I'll start thinking about a safe way for me to climb up into my large trees. That would take a lot more upper body strength than I have which is why I never tried it before when I was fairly fit. But the good thing about climbing a tree is that you get to rest on the branches. I used to love to climb trees all the way through to the time I was in college. When I was in high school I'd climb up into the trees and read a book. Sounds very appealing even now. Then again, climbing up and down some pretty stairs is pretty strenuous at the moment and would be more than enough for the endorphin release I enjoy from cardiac exercise.

Sunday, November 05, 2006

Late fall roses

I always enjoy the late roses more than any other ones. It's amazing how some varieties will linger even after a few hard freezes. On the rare occasions when we get a November snow in my part of NC, I have been blown away by the roses in the snow. So beautiful. Ironically, I took some photographs that worked out well of my roses in the snow a number of years ago, but I changed it to black and white for some project or another and the only version I could find was the black and white one. I posted that in an early blog entry. These roses shots were taken yesterday afternoon and this morning. I woke up this morning and when I saw that it was 27 degrees farenheit, I put a coat on over my nightie and went out side to see if I could get a shot of my storeage building rose with a covering of frost. No such luck. It was frosty but the rose has enough protection that the main signs of the cold morning was that it was bowing down. The difference in the morning and afternoon light interested me. I've noticed that before. In the morning the storeage building is a totally different shade of green than it is in the afternoon. I did get a few frosty shots of the plants and the verbenum leaves look almost silver. I love verbenum. It is such a pretty groundcover and in the spring the flowers are almost like a colored blanket. I don't have as much verbenum as I used to and ironically what's doing the best is not in an area where it was originally planted. It spread out to where the stepping stones I put in the pathways are and the main place it's thriving is in the pathways. The treeline I can see in my back garden is such a tapestry and those tree are in my neighbors gardens. Funny how I've stopped calling the lots, yards. I got that from the wife (Viv) of a man who owned a publishing company I worked for in the early 1980s. When Bill and I bought the house I still live in, we had a housewarming party. I said something about my yard and Viv said, this isn't a yard, it's a garden. Viv was from England and the terminology was different because back then I had a lot more yard than garden. For that matter, we hadn't put in a garden at all so although we did have some nice trees and blueberry bushes, there was little else besides grass. Bit by bit I've eliminated almost all of the grass. It's funny how much I love tall grasses and meadows but don't care much for lawns. My problem with lawns is my favorite grasses are tall stands with interesting seed heads. A lawn gets mowed before it has a chance to form seed heads. I like plants that can cycle through all their natural times, all the seasons. Also, when they are allowed a natural cycle, they often support a host of wildlife.

Saturday, November 04, 2006

Me and my garden and melanoma

I thought I might try a self portrait in my fall garden for my profile pic since I've changed a little since 1960 when my current profile pic was taken. Didn't really come up with one I felt like having in the profile but thought I might use it for this post. I took some pics of my secret seat this morning which show the crepe myrtle's fall color. The one of me that I took this afternoon was too close to get much of the tree. It is funny how this blog has ended up in large part being me and my garden and the aftershock of getting melanoma. Maybe funny isn't the right word. I often use funny when I mean odd. Sometimes oddities are funny but sometimes they aren't. I remember a charcoal my dad did when he was in the hospital of an orchard in a urinal. That was odd and funny. I miss my Dad's sense of humor. That isn't a great example of his sense of humor because he could be quite sophisticated. Maybe the mix of silly and sophistication was part of his charm. He could almost always make me laugh although I'll admit I was a little pissy with him about some of his humor which pushed my buttons. I understand the older I get and the older my daughter gets, why he didn't always have much patience with my thinking he went over the line with some of his humor. For one thing, he never directed it at people who would be hurt by it, at least not when they were around. I find myself at times amazed when I think my daughter is lecturing me about something I cared about before she was born. I realize it was like that with my Dad. I ended up with my Dad's journals and I've never quite been able to decide whether it was okay to read them. I've started to several times but always felt uneasy. I remember one entry that made me melt into a total puddle. We had gotten into a tift over something silly and my Dad had written about how he had to stop baiting me. He mentioned that he was immature and then he said, God I love those two so much (referring to me and my daughter). I know that he knew how much I loved him and I know that he knew that his maturity level was actually quite high in the important ways. I think that part of why that entry always stopped me from reading further is that I didn't want to think of him as having pain from feeling like he was goading me when it was all so silly and never amounted to much. It's not that I think he dwelled on it. I don't. However, I know how I tend to dwell on things in my life and it somehow boils down to doing the best that we can. The top part of my largest oak tree is FINALLY the fiery red I've been waiting for. The lower branches are stil a mix of red and green but the top part is bursting with color. Won't be long now before the leave are all lying around patiently waiting for someone who cares to rake them. I care enough to try to keep from having wet leaves on the places people have to walk to get to my doors, including me. Nothing like slick leaves to trip the unwary meter men and women who run from house to house. I think the gas and electric services must give commission based on speed or something like that. In recent years I notice them running in between the houses they check. That would be a tiring job to have, particularly as you get older. I fear that they may be held to unreasonable standards or they wouldn't jump out of their trucks and take off running.

Friday, November 03, 2006

Red Stars on a Blue Sky

The tips of the trees look like stars to me. Little red stars sitting on top of a tree. I have a friend I used to walk with fairly regularly. We still occasionaly walk together and have a plan to call each other on the next foggy morning because we both love the fog and have had some pleasant foggy walks in the past. One of the things I like about this friend is she is also very responsive to what's going on around us when we walk. I can remember her stopping in awe at a burning bush when it was in full color. We both got hysterical walking around Shelly Lake one time when the path was flooded. We missed our chance to turn around and ended up slogging through water that was knee deep and the whole thing made us laugh at having one more adventure. The foggy walks started when she was a neighbor and we both had infants. We'd nurse the babies and put them back in their cribs and go for early morning walks before our husbands went to work. There were so many times we were walking in fog as thick as pea soup and it lent an air of mystery to everything ahead. We aren't neighbors anymore but we don't live too far from each other. My practical side can't ignore the fact that a plan to walk in the next dense fog means that one of us has to drive in it, at least for a short distance. I thought about that when we had warning about dense fog. It didn't work out that morning because we both saw the fog warnings fairly late at night but were afraid we might wake each other up, if we called to set a foggy walk date. I was amazed yesterday by how dramatic the differences in my surroundings were as I walked. I left my house with the red stars dancing on a blue sky and as I walked around the lake, one view was puff ball clouds on a silver lake and the next view was blue skies once again. I love the way the clouds look in the fall. They come in and out so fast and add an air of mystery and drama. Everything will be changing very fast now. It's quite cold this morning and tomorrow will be even colder. Of course it's all relative. Cold here in the fall is anything below freezing. I am procrastinating this morning. Can't seem to get moving although I should. Hopefully I'll get some energy soon. Even if I don't, I can take those baby steps, do those little tasks, go to the water class I'm taking. That's usually effective for me if I feel like I'm getting depressed. First do what I have to do (work), then do what I need to do (water class), then depending on work for the day, be sure to fill my time with something productive. Those small tasks like paying bills or washing the dishes can add up to a day not totally wasted. Not sure why the urge to climb into bed and curl up under my comforter is so strong this morning. I'm sure it just a fleeting moment in time. I haven't had that feeling of wanting to hibernate in a while so maybe I'm due.

Thursday, November 02, 2006

Almost makes me giddy

The colors in my neck of the woods almost make me giddy. The mountains were quite beautiful this weekend but past the peak color. We're just hitting peak in the central part of the state and it's enough to make me drunk with the sheer audacitiy of it all. There is so much that I can't make sense of and I'm beyond trying. What I can do is try to enjoy what is available that doesn't require a lot of analysis. I made it to my second water class yesterday which was fun although tiring. I think I'll go for a walk today before I do anything else. Fortunately I'm in a slow spell with work which is nice since I was quite busy for the past few months. I ended up working most weekends for several months. It's nice to be able to work from home but the price I pay is that I feel obligated to work weekends when it gets busy to make up for the slower spells when I have the luxury of being home. It was especially nice to go out of town last weekend because I had been working a lot of extra hours until recently. My life is so easy in comparison to so many people's lives. I am in awe of the people on the MPIP who keep working while doing Interferon and other treatments. The mother's with young children who are fighting so hard. The teenagers and young chidren who are undergoing tough treatments. It's sobering. On to the day and the blast of color that will greet me as I head out the door.