May be starting to believe

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.

It's beginning to feel a lot like . . .

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.

No Woman No Cry

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.

Winter walks are amongst my favorites

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. . .

Old to New

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.