Saturday, December 30, 2006
I am so glad that I decided fifteen days ago to begin another push towards physical rehabilitation. I would hate to be starting once again with resolve centered around a new year because, if I do that, I would have to think about last year's resolve. I am literally focused on a day at a time and I've made it to day 15 having walk/jogged 11 out of those 15 days and if I make myself push off this morning it will be 12 out of those 15 days. My eye is on the weather and with rain in the forecast for tomorrow and the next day, I may try to do my route today. Not going to worry though if I don't because today will be the third day in a row of walk/ jogging 2 and a half miles and I'm dragging a bit. Besides the fact that I've been able to maintain a regular walk/jogging routine for two weeks, I am encouraged that I've picked up the pace. I've shaved three minutes off of the first mile, two off the second one and one minute off the last half mile. At one level it's probably a mistake to pay so much attention to distance and speed. It's not like I'm running a race or rather walking a race which is what my speed is like. I've never run a race since junior high school which is when I started smoking. Almost immediately after starting to smoke I had chronic problems, not only with a reduction in breathing capacity but also with sinus headaches and chronic bronchitis. Instead of realizing that meant I couldn't smoke, I dropped off the junior high school track team. It wasn't even like it was easy for me to smoke. I had to sneak around and until I was through high school I couldn't smoke around my parents. By the time I was 18, I wanted to stop smoking but by then was totally hooked. It took another 25 years before I was able to stop although I rarely smoked when pregnant and nursing. Almost immediately after I stopped smoking I stopped having sinus headaches, bronchitis and breathing issues. Within a few years of stopping smoking I was able to jog and eventually run again. I only had about a year of being able to run before my melanoma dx but the muscle memory from running 5 to 6 miles most mornings had been sufficient for me to pretty quickly get back to jogging a couple of miles and walking the rest once the drain came out after my groin LND. It's been a struggle since then. No whine just the facts. Given my prognosis going in, with the pathologist favoring the lesion as metastatic, and the good news being that it ended up likely to be a deep primary with the only spread being to the sentinel node, I have been lucky as all get out. However, it has been hard for me to give up something that made me feel so good. Running gave me an endorphin rush that made the whole day brighter. I listened to music more. I danced around my house. I was optimistic about the rest of my life. That's what I've been struggling to regain since my groin LND. The reason I think endorphins are the issue is because when I get well enough to push again, I start to get some of that back. However, in order to get that elevated mood from endorphins, I have to push a little bit past my outer limits and the trick is to do that without having a set back which lands me back to limping around the block. Perhaps an even bigger problem than limping around the block is how I end up with new and different symptoms and that starts me back to worrying about some kind of recurrence. I'm pretty much over that at this point. Unless I end up in an ER situation, I'm not pushing anymore for answers no matter what happens. I'm going to assume any set backs are just that, set backs, not recurrences. In a few weeks I get the blood work repeated at my rheumatologist's office (vit D and CRP). I have a full body PET/CT scan that my medical ONC set up for me in early March. I see my DERM in early March. I see the Rheumatologist in early March. I see the NP at my surgical ONCs in late March. I see the pain doc in April. I see the medical ONC in June. Those are all routine follow up types of appointments, blood work and scans. I guess my point is that if I have new and changing issues as I have in the past, I can assume they relate to my continuing rehab efforts and know that if I'm wrong there are a lot of smart people approaching it from a lot of different angles who will carry out additional diagnostics if something is funky. Perhaps my new year's resolve is going to revolve around letting go. Letting go is not the same as giving up. I am not giving up anything, not a single thing that matters to me. I am letting go of my efforts to figure out things I'll never figure out. February 3, 2007 will mark 2 years since my melanoma lesion, which was at least 6.9 mm deep, was removed with a shave biopsy. The subsequent WLE removed another 2.8 mm of residual dermal melanoma and I had one node which was positive for microscopic amounts of metastatic melanoma. I am trying very hard to believe that I am done with melanoma for good. Perhaps if I tell myself that I am done with it enough times, I will believe it.
Wednesday, December 27, 2006
I'm glad everything is falling into place for my daughter. She got the job she applied for yesterday at a bakery/cafe. It's a little over a mile from here and will be convenient as all get out. I was hoping she'd get a job right away because I knew if she did that she could save money living at home for gap semester in between graduating from college and starting law school. This will be the longest that we've lived together since she went to college. For that matter, this will be the longest we've been in the same state since she went to college. I think it will work out well, especially since she was able to get a job right away. She is going to try to get a part time job at a book store which is in the same shopping center as the bakery/cafe and work two jobs. Either way though, at least she knows she has one job and that will begin next week. I am having trouble getting going this morning. My work has hit a brief lull, in part because so many people are on vacation this week. I am off soon for a walk but am not in a hurry. Pretty chilly outside which I like but for some reason today I haven't felt like rushing out to the chilly morning. I've been watching the birds from my bedroom window. If the screen didn't provide such a weird background I could have gotten some good pictures. Funny to post a cloudy shot that I took a week or so ago because the sun is bright and the skies are blue.
Tuesday, December 26, 2006
It's nice to have my daughter home for a while. She graduated from college this month and is waiting to hear from all the law schools she has applied to before deciding where to go next. She has been accepted to start in the summer at one which would be a big move and if she goes there it wouldn't make sense to make some of the moves that she had planned for this out of school semester. Therefore, she asked if I minded having her home with me until her next big move and of course I said I'd be delighted so she has an interview lined up today for a bakery/cafe job that would be within walking distance. Something like that would be ideal for her, in my opinion or the bookstore which is also hiring and where she'll interview in January if she doesn't get this job. The way it has turned out since she went to college in 2003, I have rarely had her home for any length of time. One winter break she had a three week course in France. She had jobs out of state for two of the three summers. Therefore this will be different for both of us. Depending on the job she gets here and where she goes to school next she could conceivably be home until next fall although once she hears from all the schools, she may go ahead and move to the one she'll attend if she can get a job lined up there. I guess we'll see. Busy body that I am, I've also mentioned the nearby library and other places she might try for a job close by. Her car died a year ago and since she was going to Ireland for her semester abroad (last spring) she decided that it didn't make since to try and get it fixed (it was old) or try to get a new car. Since then she has decided she doesn't want a car. She'd rather walk or use public transportation. Hopefully that will work out although where I live isn't geared towards not having a car. There are, however, a fair number of places within two miles where she may be able to work.
Saturday, December 23, 2006
I find it odd the way I can keep writing on this blog and can't seem to write in my journal anymore where I would be free to say anything. I'm pretty free here but it's such an odd thing to do. Keeping a daily journal for myself is one thing but the way I keep writing here almost daily, at times, is quite bizzare. I didn't understand it when my daughter used to do it. The funny thing is she doesn't do it anymore. When I mentioned that I was keeping a blog she said that she was over all that. Not in so many words but that was the gist of it. I really should get going with my day. My daughter is sleeping in and I intended to walk earlier than this and then go do my christmas eve grocery shopping so I don't have to do it on Christmas eve. My daughter went to the store yesterday to get the heavy stuff so I am mostly getting fun stuff today. I want to wander around and get what catches my eye. Normally a dangerous thing to do in the grocery store but what the heck, it's Christmas. One reason I need to get moving soon for a walk is that it's not raining. It rained most of yesterday and is going to rain today although I'm hoping not until later. Christmas day is forecast to have rain and temps in the 40s so no chance of a white christmas here. That's okay. I didn't expect a white Christmas. We're more likely to have a white Easter than a white Christmas with our bizarre weather patterns. The birds are active as all get out. Everytime I walk out the door there are a ton of them zipping into the bushes or up to the tree limbs but I don't have the ability to photograph them although I keep trying. I guess I'll get going soon because if I don't I'll miss that walking window and I've done so well since I started my latest effort. If I walk/jog, I almost make the kind of time I used to do with my fast walk way back when. Funny that I have to have short jogging intervals to get up to what was my normal brisk walk. I'm not even talking about what I could walk when I was younger and slim. I'm talking about the brisk walk I did in my early 40s before losing my excess weight the first time. The thing I hate the most about extra weight is that it makes everything harder to do and with my other limitations it has become a big factor. Whine, whine, whine . . . but I am starting to lose some of it which is helpful.
Friday, December 22, 2006
I was looking through some of the photographs on my old computer that I haven't decided yet whether to move onto the new computer, or delete, and I came across my Christmas tree in 2000. I guess I'm exaggerating in my mind a bit the difference between my current Charlie Brown tree and the ones I used to get. At least that year, it doesn't appear that I moved much of the furniture out of my living room. I guess that was more my tactic when my daughter was small as I distinctly remember storing a lot of furniture to get the tree in. I have to admit that looking at these photographs I do sort of miss having a tree large enough to hang lights and read underneath it with my daughter. I'm picking her up from her dad's today. Bill and I picked her up from the airport together last weekend and after a brief stop here she went to her Dad's for the week and is coming back here today. Bill and I only live a few miles a part which is convenient. I'm doing Christmas eve supper this year and he's doing Christmas Day dinner. We alternate the feast days now which works well. Since I did Thanksgiving this year, he's doing Christmas day dinner but on the years it works out like that I usually do some kind of Christmas eve supper and invite him over which is fun. I am very lucky to have a close friendship with my ex husband. The older I get the more I appreciate that for a variety of reasons. The first few years after our divorce we weren't this close but fortunately we are now. Looking at my old Christmas trees is making me a bit nostalgic. Who knows maybe I will get all the ornaments down after Christmas and hang them on clothelines strung up around the windows. It's a thought. Keep a little year round magic going. A friend suggested that I do that during Christmas because I have so many ornaments that I can't hang on my tiny trees this year. I do have a few of my favorites on cabinet knobs and the large ones sitting under the little tree in front of the increasingly large pile of presents. I don't even think Santa is going to fill the stockings this year. My theory is Santa is going to take one look at the pile of presents under the little tree, kiss them and move on without bothering with the stockings. That's what I'd do if I was Santa. Perhaps an orange in each of the stockings but that will be it.
Thursday, December 21, 2006
I keep trying to take a good photograph of my blueberry bush this winter. None of them really show off just how red it looks, almost like a burning bush. It's particularly spectacular because almost everything else in my back garden is brown and bare other than the privet hedge and nandina and the neighbor's pine trees which form part of the horizon. The blueberry bush is pretty much the only bright color left, with the exception of a few holly berries in the front of my house and the nandina berries in the back. On the right hand of this picture is my 2007 Charlie Brown tree. I have it picked out and will see what a year's worth of growth does. Bill thinks it has too many bare spots but isn't that what makes a Charlie Brown tree? The little volunteer cedar I lopped down this year is pretty full but even so, it's size alone gives it that slightly funky look under the weight of even the few ornaments I hung on it. It does amuse me that I am letting volunteer pines and cedars grow in my garden with the idea that they will provide the rest of my christmas trees for here on out. I think the last cut Christmas Tree I bought was December of 2004 and it was almost a hundred dollars. Pretty silly for something that was going to end up on the curb after a few weeks. Last year I bought a couple of potted trees which are sill alive but they are pretty sad looking so I'm shifting to the garden volunteers. The potted trees would do better if I got them out of the pots and planted them but I have plenty of volunteer Pines which is what they are and even more volunteer cedars. I love the way one man's weed is another man's volunteer. I even have volunteer bulb flowers. I guess the squirrels dig them up and bury them somewhere else. That's the only idea I have for how I end up with irises and tulips in spots that they weren't planted. The lilies have big seed pods so I understand how they travel around the garden but I don't think that's what happens with the other tubers and bulb flowers that volunteer in unexpected places. I need to remember to pull up the little trees volunteering at the base of my pecan tree. Not sure what they are. I left them for the burgandy color but that is not the spot for them to join the multitude.
Wednesday, December 20, 2006
Looking through my old garden photos I thought I'd go for contrast. I'm thinking ahead to the spring because I want to try to help it along by scattering seed heads that tend to volunteer even without my help. I'm helping because there are areas I would like to have flowers which haven't been garden spots before. The contrast part is since it's almost Christmas it seems odd to post the shot I think of as my in my easter bonnet shot so I'm also going to post one of my ice tree shots. Amazing how destructive something as beautiful as an ice storm can be. I titled this post walking the world because I'm intriguiged by the idea and there is a group called walking the world which is geared towards the 50 and up age group. I'll be 50 in November of 2007 so I'll be in that age group in a blink. In some ways the trips seem a little tame. Particularly since my goal at one point was to do an older adult tailored outward bound trip. Walking the world as the name implies does involve a lot of walking but there are nice hotels at the end of the walks. One of their upcoming trips is to Costa Rica and according to the description you get perks like: "And for an unforgettable evening, we’ll enjoy a luxurious soak and dinner at Tabacon Hot Springs, an extravagantly landscaped series of hot pools and waterfalls at the base of Arenal Volcano. Overnight in Fortuna." Since you have a four hour walk the next day, it probably is nice to have a recovery like that to get re-energized. This is all fantasizing at the moment. For one thing I'm worn out if I walk for an hour. Funny how the sissy trip seems beyond my current abilities. I am feeling so much better though and I want to focus on that. This is day 6 of my latest effort to do the best I can. I've been walk/jogging for 4 out of those 6 days. I've also been doing my P.T. exercises. I've lost 7 pounds. I suspect at least half of that is water weight but that's good. My left leg looks almost the same size as my right leg so I know the lymphedema is under control. Progress.
Tuesday, December 19, 2006
This is day five of my new focus on improving physically and forgetting about the cause. I've done everything possible to find out the causes of my ongoing mix of symptoms and at least two worisome ones has been diagnosed. The chalazions explain some of my weird visual issues and are being helped by the eye ointment. The vit D supplements are helping my balance. As to the rest, it doesn't really matter whether it's about my body freaking out after the groin dissection or some weird autoimmune dysfunction. What does matter is that I do the best I can, within the context of what's possible, and stop driving myself crazy trying to find answers. This is day 5 of my latest effort to get back to doing the things that I love. Perhaps this would be a good day to put new strings on my guitar or play the piano. Work is slow which gives me flexibility. I'm also going to go on a walk/jog. I am finding that my 2 and a half mile route is do-able. I probably don't jog more than 6 minutes total but just that little bit is enough to make my walk aerobic. I'm walking for a few minutes jogging for a few and back and forth until the mile mark when I stick with walking for the rest of the route. I managed to do that 4 days last week and this week I'm shooting towards 5 depending on how I feel. I'm also doing the physical therapy exercises. Yesterday was my day off from my walk/jog and I ended up doing some minor garden work. Mostly cut down the stalks with seed heads for flowers and sprinkled them where I think I'd like to have flowers in the spring.
Monday, December 18, 2006
I am considering habitat gardening when I decide what to do for fall cleanup. Yep, I know, it's winter but we're having some unseasonably warm weather. I didn't do much fall cleanup and I'm feeling marginally strong so it seems like a good time to decide what I want to do. I definately want to pull dead weeds out of my rose beds. That one is easy. I want to shift some more of the suplus leaves from my front garden to my back garden. My main leaf shift has been from the driveway which was enough for some of my back garden pathways but I have a ways to go. I'm not sure what to do about the leaves in the bushes. If I don't get them out before spring nesting, I can't do it. The birds often build nests in areas where the leaves add to the cover and I can't risk disturbing a nest in the spring. I was surprised when I got my wreath off the hook against my house where the deck is to find an old nest on the back side. I'll repriese my photo of the baby bird here because I wonder if that was the bird that was nurtured in the nest. Probably not. It was probably a much smaller bird. Last year's wreath was my first sort of fake one. It had dried greenery and berries so it wasn't exactly fake but it wasn't fresh either. After Christmas I hung it on the hooks in the back and a bird nested on the back side where I couldn't see it. This year I got the wreath down to put on my front door and added fresh greenery and red berries from my holly bushes to give it a face lift. When I was brushing off the leaves and other materials that I assumed had fallen from the roof onto the wreath, I came across a perfect little nest but fortunately it was clearly old and had done it's duty of protection already. I wish I knew more about fungus. Some of my mushrooms look like the ones you pay a fortune for in the grocery story and I love mushrooms. However, I'm not brave enough to try to harvest the ones that volunteer on the old base of oak tree trunks. I used to have 5 oak trees in front of my house but one got sick and the other was iffy so I had them removed. The base is a fungi heaven. The three remaining oak trees are more than enough shade for the summer shade garden.
Sunday, December 17, 2006
I am not exactly where I started when I first began keeping a blog. There are some similarities. I am trying to build up a walk/jogging routine that I can live with. I am trying to think more about habitat gardens and less about melanoma. I am still in search of that elusive new normal. In a way it makes sense that I'll be going back through old photographs for a while, possibly having some repeats as there's no way I can remember which ones I've already posted. The main thing I'm photographing these days are the birds and I'm not very good at it. Part of it is the places they sit still are in branches were they feel protected. I can photograph them through my windows but I find that less than satisfactory. In my last blog entry I said that I needed to stop thinking about melanoma so much but that doesn't mean I'm not going to be checking the MPIP or blogs that people I've gotten to know through that site keep. These are people, most of whom I'll probably never meet, who have come to mean a great deal to me and I want to know how they are doing and if there is anything I can do to help, I want to do it. I also like to find information for people and offer what support I can to the newly diagnosed. What I need to do though is find more balance. I also need to focus on the fact that I am NED. I need to find a way to believe it. One of the many things that has concerned me off and on has been visual changes. My eye doctor has prescribed some meds for me because I have chalazions. Apparently these little bumps that keep popping up under my eyelids are yet another sign of immune system dysfunction and treating them may help my weird visual issues which have concerned me. Pretty much everything that's wrong with me could be explained by an autoimmune response and the irony is that it may be a good thing for my melanoma prognosis. If I look at it like that, I can believe more and more in NED. I'm sure I've mentioned this before but the frustrating thing for me was that I chose not to do interferon thinking I stood a better chance getting back into fighting form after my LND. When that didn't seem to happen but instead I started to fall apart physically I assumed that I was having a recurrence. It is finally sinking in that falling apart may have been a good thing. People get so sick on these tough immunotherapy treatments because the drugs are sending them into a strong immune system response, hopefully killing any lingering melanoma cells. Simplistic explanation from a non medical type like me but I think I have the gist of it. In my case it seems like my body did that on its own. I ended up with symptoms of peripheral neuropathy although nerve conduction studies were unremarkable. I've had some symptoms of fibromyalgia. Now I have the eye issues. All of this could be part of my body fighting and rejecting the bad stuff. I was surprised that I was negative for the antibodies I was tested for in terms of paraneoplastic syndrome because that would have fit in but just like nerve conduction studies can underestimate, people can also have paraneoplastic syndrome without testing positive for known antibodies. I need to focus on the fact that my body may be fighting this internal war but all signs are that it's winning. All I can do is keep putting one foot in front of the other and do the best I can. If I can hang on to the fact that the vitamin D deficiency and an autoimmune response can explain pretty much everything that's happened over the past 19 months, I can start to believe that I'm NED.
Friday, December 15, 2006
I am getting a break from it all. By that I mean a break from the endless doctor's appointments. I have no appointments in January and only see my periodontist in February. March begins the next cycle of appointments but that's almost two months off. My appointment yesterday with the medical oncologist went well. He strikes the right balance with me. He addressed the uncertainties that cancer patients have to live with and how no test is 100 percent but that he isn't seeing anything to indicate the need to be concerned yet. I discussed with him how hard it was for me to stop listening to my body. The issue being that I've always had good instincts about my body and have been able to recognize when something was seriously off. He said I shouldn't stop listening and that if I had new or worse symptoms I should try to find answers and that I should call him if I have concerns. Right then and there I felt a wave of pure relaxation that I haven't felt in ages. The way it will work is I'll see him every 6 months as well as continuing to go to the melanoma clinic I've been going to every 6 months. My other oncologist is a surgical oncologist and my appointments at the clinic alternate between him and the NP. Now, I'll also be followed by the medical ONC at the cancer center where I live. The medical ONC also said he could set me up for my regular PET scans and then would send them to UNC prior to my appointments there. That will be so nice to get scans in Raleigh instead of having to drive to Chapel Hill. I was afraid that the medical ONC was just a consult and that I'd have to decide between seeing him and seeing my UNC doctor. That would have been a hard one because I feel like the Cancer Center at home is so much easier for me but the surgical ONC is the one who has melanoma as a specialty and who is involved in melanoma research. What a relief that I didn't have to decide between the two although eventually I hope I won't need so many appointments. Sometimes I wonder how different things might have been for me if I had automatically been referred for physical therapy after my groin dissection like some people are. I like the melanoma clinic at UNC as far as it goes but the attempts to reassure me, after I started to fall apart physically, back fired. The NP in particular had a tendency to say, it's unfortunate that you are having all these problems but they don't have anything to do with melanoma or the surgery. Huh! My surgical ONC is an excellent surgeon and it's not that I blame him for anything. He was up front with me about a percentage of people having chronic pain after a LND. I will never understand why the NP would say to me repeatedly that my problems had nothing to do with melanoma OR the surgery when the surgeon himself acknowledged that some people do have chronic pain after that surgery. It didn't help either that the first post surgery PET scan I had, to reassure me that my problems didn't relate to melanoma, was the one where the radiologists found an issue in the groin that at that point they were saying was consistent with a tumor recurrence. That issue settled down and is now considered (on PET/CT) to be consistent with surgical changes although the last pelvic MRI couldn't exclude a recurrence. I am ready to move on and it's easier for me to do that now that I have a doctor who has made it clear that I should call him if I have a problem. It makes it easier for me to start looking once again for that elusive new normal. I also feel like all the bases are being covered. I see the NP at UNC in March for my regular check there; I see my medical ONC in Raleigh in June for an exam and lab work; somewhere in there I have a dermatology appointment and PET scan. I also have a Rheumatologist and pain specialist appointment this spring. The one I most want to drop is the pain specialist but there's no way around that while I have to take the pain medications. I hope one day to go back to having years between doctor's appointments except for the obligitory GYN physical. When my family doctor retired in 1990, I didn't go to a GP except for once for 15 years. My only other doc appointments was the GYN physical, eyes, and teeth. Since my melanoma dx I've seen a dermatologist, oncologists, neurologist, rheumatologist, pain specialist, NPs, PCP, physical therapists, blah, blah, blah. I know how fortunate I am. I know how much better my medical care is than what so many people can get. I also know that people with a better prognosis than I had going in are no longer alive. I know people fighting active disease and who handle tough treatments with so much grace and humor. I am going to try to honor my good fortune and do as much as I can. I don't want to merely occupy space. As far as melanoma goes, I'm going to try to take a break from thinking about it at all. I want to check in on people I've gotten to know through an online melanoma support group. I've met several people in person through that site and ones I only know through their blogs, MPIP posts, and email have become people I care about and respect. I don't want to lose touch with the people I've gotten to know through melanoma but I want to take a break from thinking about melanoma so much. I am so incredibly fortunate in that I'm not in an active treatment against active disease. I need to find ways to honor my good fortune and . . . . . .
Tuesday, December 12, 2006
I may be starting to believe in NED. No evidence of disease is shortened to NED on a melanoma site I participate in. I was very relieved to get a call yesterday from the nurse at the medical oncologist's office to let me know that my MRI of the brain and bone scan were normal. I will see the doctor Thursday to discuss my situation but was very pleased that they went ahead and let me know the scans were fine. At this point I think I have to try once again to start moving forward, one step at a time. I have been walking regularly. Not running, not strolling, walking steadily on my standard neighborhood routes. I am being careful not to get carried away but at the same time I'm trying to go fast enough so the endorphins will jump in. It's working for the most part. I'm getting a little better mentally. I have to believe that I am going to continue to improve physically and mentally. If I hold on to that I can start moving away from the stress of trying to figure out things I'll never figure out. I will never understand why I've had so many physical problems since my groin lymph node dissection but I can start trying once again to find that elusive new normal. I may have to accept that the new normal will be full of changes. Some changes for the better like I've already received from the vitamin D supplements which are correcting the deficiency slowly and improving my balance. As my levels come up more, that may help with some of the myofacial pain. There's no answer yet about the C reactive protein being high or the peripheral neuropathy symptoms but perhaps the medical oncologist will have some ideas. If not, all I can do is keep trying and be grateful for what I do have which is quite a lot.
Monday, December 11, 2006
I finally got going on christmas this weekend and pretty much did the shopping and little bit of decorating I'm doing this year. I thought I'd post some of my snow shots from past winters to get even more in the mood although it almost never snows here for christmas. As a child all of my white christmas memories were in Boone visiting my Grandmother. I think we have had a few almost white christmases but they were more a light covering. Looking at the dates of my old snow shots, I'm amused at the range with some in November, some January and some March but none are December. I have a Charlie Brown tree this year and it cracks me up. I cut it down from my front yard. It is a volunteer cedar which I almost pulled up as a weed but I thought to myself, no I'll let it grow a few years and then use it as a small Christmas tree. That's what I did. I have some pine trees that volunteered and I'm letting them grow for the same reason. The days are long gone when I move most of the furniture out of my living room so it will accomodate a tree large enough for my bazillion ornaments. I used to enjoy that but it's not a priority for me any more. Besides, my Charlie Brown tree amuses me and is more than enough. I also have a small table top tree and have hung ornaments on odd places like cabinet latches and curtain rods so I can use some of my favorites that won't fit on my little trees. I have never quite lost my child like enjoyment of the magic of days that are out of the ordinary. Doesn't have to be Christmas magic but anything fanciful tends to strike my fancy. Maybe that's why I believed that a wiked witch had changed me into a human being for so long. I was far to old to continue to believe that I was a fairy princess but I held onto that fantasy for a long time. I came to appreciate my life as an adult but I was far more comfortable with make belive as a child. Perhaps that's why I am so fearful of immunotherapy type treatments for melanoma. I don't want to risk a treatment that messes with me mentaly. It would be different if the stats were better but I was afraid of interferon more for the slight chance of long term mental side effects than the physical ones. I have never been mentally ill but I've always been a wee bit eccentric and I fear becoming more so. My balance of eccentricities is about all I can handle. I guess I'll leave it here with my Charlie Brown Christmas tree which fit in without moving a thing. It makes me laugh everytime I look at it and that's a good thing in my book.
Friday, December 08, 2006
I made it through scan day yesterday fairly easily. The bone scan wasn't bad at all and I knew what to expect from the MRI of the brain having had one before. The MRI was a different machine and my head was in the cage but it was tolerable. I almost laughed out loud near the end but controlled it. I had requested reggae as the music I listened to in order to counteract the clanging. Right when I thought I couldn't stand another minute on the narrow hard bed, Bob Marley's, "No woman no cry" began to play. When it got to "everything's gonna be alright" I had to control myself not to laugh at the perfect timing of that song. Ironically Bob Marley died from melanoma which metastasized to his brain, liver, lungs and stomach and who knows what would have happened if he'd been willing to have his toe amputated when he was first diagnosed. It certainly would have improved his prognosis. I didn't know that was what he died from until I was diagnosed with melanoma. I don't think it was talked about that much in the press or maybe I wasn't paying attention but I loved Bob Marley's music for a long time and was totally ignorant about the cause of his death and also ignorant about melanoma. I didn't have a clue that any skin cancer could spread to vital organs. Since I've mentioned "no woman no cry" I guess I should mention some of the other lyrics in that song like, "I remember when we used to sit In the government yard in trenchtown" or "Good friends we have, oh, good friends weve lost Along the way. In this great future, you cant forget your past; So dry your tears, I seh." It always drives me crazy how great songs get sanitized or the quoted lines skip the important part. Like Bob Marley's, "One Love, One Life" which is on travel commercials. You don't hear my favorite line in that song very often in the mass appeal places it crops up. "Let them all pass all their dirty remarks (One Love) There is one question I'd really like to ask (One Heart) Is there a place for the hopeless sinner Who has hurt all mankind just to save his own beliefs? " Another song that is often sanitized is Woody Guthrie's "This land is your land". I learned that song in elementary school and I still have than elementary school song book. However, it left out some of Woody's best verses in that song which are: "As I went walking I saw a sign there And on the sign it said "No Trespassing." But on the other side it didn't say nothing, That side was made for you and me. In the shadow of the steeple I saw my people, By the relief office I seen my people; As they stood there hungry, I stood there asking Is this land made for you and me?" I think it's important to remember the good and the bad of our history and take an honest look at our present. I guess I'll leave it there because I'm bordering on being political which isn't what I want to do here. Let's just say that I often wonder what I'd do if I didn't have adequate health care insurance through my job. I am very fortunate.
Tuesday, December 05, 2006
Part of what I love so much about winter walks is that I can walk anytime I want to without worrying about the heat. I can generally bundle up enough to be plenty warm when I walk, as long as the wind isn't blowing too hard. Today, I had a very pleasant brisk walk in the middle of the day, a luxury that is rare in the summer when it's too hot to walk except in the morning and evening. I also love the change of scenery. Now that most of the leaves have dropped it's almost as if a new painting has been brought in, replacing for a time the old. I think that's why I need 4 seasons. I need the change of scenery I get without going going anywhere. I must be mellowing. I don't even mind my subdivision being more exposed. I've always liked bare trees but thought the boring houses in my neighborhood needed the spring, summer and fall foliage which softens and hides the monotony of the 1968 stock plan houses. For some reason when I was walking today I thought my neighborhood looked comfortable, cozy, bare trees forming an interesting skyward view but the houses themselves didn't seem half as monotonous as I remembered them seeming in the winter, when they are more exposed to the street. I get my bone scan and MRI of the brain on Thursday and have an appointment with the medical oncologist exactly a week from Thursday when he'll give me the results and we'll discuss my situation. Not expecting any problems but it will be good to know that my brain looks like it looked 15 months ago when I got my last MRI of the brain. I've never had a bone scan so it will also be a relief to find out that all looks fine. Nice to be able to get these done at my local hospital and not have to deal with more than a short hop skip and a jump to where the scans are being done. Considering how far people drive routinely for melanoma follow up and treatments I can't complain about the hour, give or take, it takes to get to the university melanoma clinic I usually go to. However, it's nice having a medical oncologist at the hospital which is only a 15 minute drive from me. Kind of the best of both worlds having a surgical oncologist with a large research university that's within an hour from me and the medical oncologist that's within 15 minutes from me. I'm feeling pretty good about things today. Calm . . . Greatful . . . Mellow. . .
Friday, December 01, 2006
I found an old photo of my driveway garden. This one was actually my bathroom garden. Beside it was another circle which was my maple memorial. The bathroom garden was created when my bathroom remodelers put junk there and killed the grass and it gave me an excuse to get rid of the grass I didn't like and have a new garden area beside my driveway. I almost left the old toilet for garden sculpture but decided it was a bit much. The maple memorial was created when Hurricane Fran knocked down a mature maple tree. I hoped eventually to have little circle garden down to where my dogwood is and then beyond it to the azaleas that border the street. I ran out of steam. Not only that, over time they were so neglected that the rocks, shells and marble scraps were covered in grasses, groundcovers, etc. and my neighbor with the riding lawnmower plowed over them. It wasn't until he pulled down his trellis and trashed my circles that I had my little tantrum and ended up with what I've discussed already. My new oval which combines the two garden areas into one big one with stepping stones. Sometimes out of the abandoned old garden can come a new better one. I'm still struggling with how to turn a bad event like being diagnosed with melanoma and ending up with chronic junk after my LND into something positive, something new and better. Many of my plans for turning 50 revolved around physical activities that I can't do now but I need to focus on what I can do and create a new path from the rubbish. I am so lucky and I know it. I know that when I was initially diagnosed and had my very first scan there was a good possibility that I would have had wide spread metastatic tumors since the pathology on my primary made it unclear if it was a metastatic tumor or a primary. I was damn lucky that all they found was one micrometastatic tumor on my sentinel node and some residual melanoma removed during the wide excision. In some ways I was even lucky that I wasn't diagnosed 20 years earlier when pregnant. I resent the first dermatologist for telling me that my nodular melanoma was nothing but if I'd been diagnosed then, during my pregnancy, it would have added a layer of stress when I was raising my daughter that I didn't have. One of the reasons that I was glad that the new doctor I saw yesterday spoke about my history and risk factors is that I think it's important that it be recognized that I have an unusual history which could go either way. As long as I know that my doctors are keeping that in mind as all this new and changing crap keeps me from finding my new normal, I can relax. I didn't explain it very well in my last blog entry but the worse thing to do to me is say, don't worry about it, we'll worry about it. Or to say, you'll get a full body PET/CT scan once a year so we'll know if something comes up. That's the protocol at my main melanoma clinic and I'd be fine with it if I didn't have so many symptoms. I'd be fine with no scans if I felt like I got a complete check up and the opportunity to discuss my concerns. I've had a lot of scans and am getting more so it's never been a matter of me getting an annual scan alone but the hardest thing for me to forget was being told when I initially had concerns well over a year ago that I didn't need to worry that I'd get a scan once a year whether I had symptoms or not. I know it wasn't meant to be taken literally. I have been scanned out the whazoos because initial scans did show an "issue" which has gotten smaller but never completely gone away. Here's where my strange history is a factor. I want my doctors to acknowledge that I have something in me that fought all those years before I was diagnosed which may be a big factor now. As long as I keep fighting that's great but there may be a time when it won't hurt to get a biopsy of "issues" even when they are smaller so I'll KNOW that it's not melanoma. Either way, I need to focus on turning the crap into something new and better much as I created the bathroom garden.
Thursday, November 30, 2006
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
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
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.