Friday, June 29, 2007

Never Look Back

I titled this blog entry, never look back, and then proceeded to look back. I second guessed every decision I've made regarding my health, from the time I was diagnosed with node positive melanoma. I decided to delete the futile look back but keep the photos I picked from amongst my numerous recent ones of my garden.

I should mention that part of what's ridiculous about my looking back is that I am lucky as all get out to be N.E.D., as in no evidence of disease. It would be more understandable for me to second guess myself or my doctor if I was actively fighting a recurrence but all I'm fighting is a string of mess which may or may not relate to my groin lymph node dissection. Also, since my sentinel node was positive for metastatic melanoma, it's particularly silly that I fixate on the fact that some articles suggest the SNB and LND are not as clear with patients who have a very deep primary because their melanoma is as likely to have spread to distant sites as it is to spread to the lymph node basin. The point is, my melanoma did spread to a lymph node and hasn't spread anywhere else as evidenced by my latest scan.

I ended up coming back and adding the gist of what I deleted because without this addition, it ends up sounding like I'm second guessing and looking back because of something big, bad and ugly, and that's not it. I guess like a lot of people, I want it all. I want everything to be the way it was before . . . I feel guilty for being like that. I am all too aware of how lucky I am. It's not that anything particularly different is going on today which makes me keep coming back to my blog if only to write some more and delete some more. I'm a little discouraged that my energy has been decreasing lately but that's probably temporary. Could be something as simple as the heat.

It's humorous how many pictures I'm taking of my garden because I am afraid everything with wilt, shrivel up, and become compost. Although it's hot as all get out and we aren't getting much rain, it's not like I'm going to suddenly end up with a barren desert.As a matter of fact, a major storm just landed in my garden. Well, maybe not in my garden alone, but the boomers are booming and the water is pouring down. I can almost hear my flowers saying, thank you, thank you, thank you.
The good thing about letting nature take its course, for the most part, is most of my plants are pretty adapted to drought at this point. I still find myself holding my breath when I go outside for fear the lantana or other plants I love will be casualties. So far so good. I may have a jumbled mess but the color and variety is holding strong.

Wednesday, June 27, 2007

Summer perks

Summer is not my favorite time of the year but it does have some perks. Since I got home from the beach, each morning, I've been able to pick as many blueberries as I can eat. There isn't anything like food straight from the plant to a quick rinse and into the mouth. I seem to have reached an understanding with the birds. They get the top berries which I would need a ladder for and I get the rest. It's ironic that the main time I had trouble with the birds cleaning out my berries was when I actively tried to discourage them. I remember years when I used nets but increasingly I'm more than happy to share as long as they don't clean me out. I used to have 3 blueberry bushes but I can't complain because the remaining bush is big enough to provide berries for me and the birds, with extras if I get the energy to pick them to give to friends. I usually give away at least a few quarts and unless the heat and drought take a bigger toll than they have so far, this year shouldn't be an exception. I'm looking forward to black raspberries a little later on. I have a ton of them. They are all volunteers and in spite of the fact that they are growing in some rather inconvenient places, I enjoyed the ones so much last year that I decided not to pull any volunteers up for at least another season. I may have to cut back one because it's perilously close to my face when I go through the entrance from the garden to the deck but other than that I'll probably let them be until after I get this year's crop. I'm increasingly liking my volunteers more than any of my planned plants. I have to start making decisions about the volunteer pecan trees. My one big pecan tree provides nice shade for my deck swing and is approaching the height of my mature oak trees. It was an easy decision to pull up a volunteer pecan in front of my rose bed but other spots are less clear. Do I want more summer shade or to keep the sunny spot for the flowers. Decisions, decisions but good, fun ones. One thing that I've noticed is flowers that go wild in the spring before the deciduous trees leaf out, often seem to keep plugging along once they get less sun when the trees leaf out. I've even found that to be true with lettuce and other edible plants. Makes sense to me. We can all use some shade in the summer, plant and animal alike. One of my favorite things to do is listen to the birds chirping deep in the bushes hidden from view. I'm starting to think I've finally arrived at what I'm going to be when I grow up. I struggled with that well into my 40s. I don't think I'm going to be anything but me. I'm lucky to have a job which pays the bills for the most part and an ever changing view when I glance out of my home office window (otherwise known as my den, studio, or various reincarnations as living space through the years). I have good health insurance and when I take a break I can go into my garden and pick a bunch of flowers. Nothing much earth shaking going on in my life and that's okay by me. By the same token I'm not done yet. There is always the possibility of change, good and bad, as long as we are alive. I think it's at least remotely possible I'll wake up in 20 years and laugh at how settled I was when I finished up my 49th year. I certainly don't take any given day for granted any more which is good and bad. As long as it doesn't hurt anyone blissful ignorance may be under rated.

Sunday, June 24, 2007

A Different Change Scenery

One thing I love about where I live is that I'm in the middle of a state which has the sea shore at one end and the mountains at the other. I went to the beach for a short vacation and had an entirely different change of scenery from the one I had last month when I went to the mountains. Oddly after my brief ansty period, not that long ago, where I wanted to get far away, I'm in a hibernating stage at the moment where I want to stick close to home. I've always had a little bit of a hermit in me. That's why I'm glad I had a few planned vacations because it is important to get outside my home base from time to time, if for nothing else to literally see the scenery change. With a short drive west, the subtle changes unfold during the drive and the same thing happens with a short drive east. From where I live, if I head east for a few hundred miles I'm at the beach and if I head west for a few hundred miles I'm at the mountains. When I was growing up we always spent vacation time at the mountains and the beach and it was quite a nice way to collect different memories. My daughter had similar experiences as she also got those mountain and beach vacations when she was growing up. I used to think one of the best things about where I live is that it was an easy drive to somewhere else, the mountains or the beach. Recently, though, I find myself having long periods of wanting to stick close to home. It's a great perk of my job that they let me, for the most part, work from my home office with rare commutes to the office. Sometimes I think I should make more of an effort to change my scenery though because it is so easy for me to give in to the hermit side of my personality. If nothing else I should drive to some of the different trails that are too far for me to walk to at this point and take a few photo walks a week. I remember doing that for a while when I was trying to motivate myself to walk but not worry about speed. I'd walk with my camera and go to different trails although most were within a few miles from my house. The problem is when I walk with my camera, I don't get the same kind of exercise I do when I have a steady walk. I probably need to do some of both kinds of walking. I'm still struggling with that new normal, post lymph node dissection. You'd think after 2 plus years I would have found that new normal, particularly since I've been lucky as all get out and haven't had a recurrance.

Monday, June 18, 2007


If I haven't said this enough times already, I love fresh starts. Here I am at day two of my latest, renewed effort towards being as active as possible and I have walked 2 miles each of those two days. I know that it's silly for me to fixate on silly logs but it helps me stay motivated. I'm not running any races, even against my self but I'm moving towards optimism yet again. I need to keep finding ways to feel like I'm making some kind of progress, even if progress means not sliding back down the hill and ending up needing more physical therapy. That's the big deal. I have demonstarted that everytime I let myself get to a stand still I end up with worse problems, if nothing else the lymph fluid backs up when I stall out. It almost helps that the weather is getting so horrendously hot because it motivates me to get out and walk before the ozone alerts are blazing out at me on my desk top weather alerts. As long as I walk in the morning it's okay but past about 9:00 am it's too late to start which helps get me moving in an odd way.

Saturday, June 16, 2007

Fresh Start Take Two

It's funny how I am about these fresh starts, first days, renewed effort. I always loved the idea of the first day of a new school year. That's one of the few things I miss about being a kid. The idea that each new year could be completely different than the last. For some reason, I've never gotten into the whole New Year's resolution thing. Seems that would be a natural for me but it's not my thing. Six months ago I decided to make a fresh start to get into fighting form. I did okay. I didn't do as well as I hoped but about 10 days ago, I was rolling in to day 170 having hit an average of slightly better than every other day for my brisk walk. I still occasionally try to walk/jog but that is usually counter productive so a brisk walk is my current mainstay in terms of exercise. Alright then, I was doing okay but for the past 10 days I haven't don't any exercise type walking which means I'm hitting the 6 month point no longer averaging every other day. At first I thought, if I want to get back on track I need to walk every day or almost everyday for a few weeks but that's not realistic in terms of where I'm at now. For one thing, I want to keep doing a little bit of garden work. Not anything terribly strenuous but I don't have the energy to walk 2 plus miles and garden. Sounds pitiful but it could be a lot worse. These 10 days I haven't gotten motivated to walk, I have done a little gardening. My decision is that I'll start fresh again with day 1 beginning tomorrow. This time instead of trying to build up to anything, I want to stay the steady course. I want to walk at least 2 miles three or four times a week. Not great but better than standing still. I could look at it as going backwards since last time I did have a few 5 mile walks and quite a few weeks where I walked or walk/jogged 5 days a week. The problem is when I do that, I don't get stronger. I find myself getting worse and end up having to recuperate. I don't know why but I do know this is a pattern. So with my fresh start, I don't want to push to do more, I want to push to be steady. I still need to lose quite a bit of weight that I've put on over the past two years but I want to think about that as little as possible. If I focus on being steady, being active but not wearing myself out, try to eat well, that's what matters. I turn 50 in November of this year and I'm not going to set any over the top goals but what I want to try to do is enjoy what I do have, keep moving, never give up, never give in . . .

Friday, June 15, 2007

One more appointment out of the way

I saw my medical oncologist yesterday. As far as the melanoma angle goes he thinks that I'm doing well. Since my CRP has been elevated for at least 10 months and my scans during that time period have improved, he doesn't think it's likely to relate to the melanoma. If it turns out that I do have an autoimmune disease, he thinks that it will depend on how bad it gets as to whether I would want to take autoimmune suppressants and indicated that only I can answer that. He said all things equal it's better to avoid systemic treatments that would suppress an immune response but sometimes they are necessary. I know that as long as my pain is managed, I'm not going to want to risk it. If anyone stumbles across my blog and wants to know what the heck I'm talking about, here's a pretty good description of CRP: "When the immune system senses injury or a foreign invader (e.g., harmful bacteria), immune system cells secrete inflammatory chemicals. These are chemical signals that launch an inflammatory cascade as the body begins the healing process. CRP is produced in response to elevations in these inflammatory chemicals. CRP is also produced in response to blood coagulation." Okay then, so as I read more the list of specific conditions that can cause an elevated CRP include cancer, heart attack, unstable angina, rheumatic fever, rheumatoid arthritis, systemic lupus, tuberculosis, pneumonia, postoperative infection, heat stroke, trauma, high blood pressure. There are medications that can cause mild elevations, same with exercise, etc. but none of those factors cause it to be as elevated as mine is. For that matter, mine is higher than would be expected with heart disease which is why the autoimmune diseases or cancer seemed more likely to the rheumatologist at this point. That's why it was a relief for the oncologist to think cancer is unlikely. He said he'd schedule another full body scan after I see him in six months and that I should feel free to call if I need to come in before then. He also said I should try to stop taking premarin. He said at my age I may not even have hot flashes or other symptoms and that I should try to wean off the premarin so I'll discuss that with my gynecologist when I have my September check up with him. Perhaps the biggest surprise was how he changed my pain meds. He's concerned about all the tylenol I'm taking and wants to protect my liver and kidneys. He said that he would get in touch with my pain doc but in the meantime he wrote out a new script for a stronger med that didn't have any tylenol in it. He said if I occasionally need to add tylenol that's fine but I shouldn't take as much tylenol as I've been taking. The pain med my pain doc had me on had tylenol in it and I also added tylenol when my level of pain medication wasn't sufficient. I don't feel like I have a good enough rapport with my pain doc to request something stronger. I was surprised that the medical oncologist would take care of it without me asking him to. The pain doc is fine and lately my appointments with him have gone fine but he offended me at our first appointment and I've never really gotten past that. I think that's more about me than him. I'd rather make do than risk him pissing me off but it's nice that the medical oncologist is taking care of it.

Thursday, June 14, 2007

People with Melanoma who blog

On my Big Bear group of links, I have a section with perspectives from people with melanoma. I only included web sites or blogs which included a history rather than journal type blogs. Although my blog is a journal, I linked the part of my blog where I summarize my story in the patient perspective section. I have decided that I want to have a list of all the bloggers with melanoma that I've gotten to know either on the MPIP, through their blogs, or in some cases in other ways. If anyone wants to be removed from this list, or their family members in the case of the dearly departed want a blog off my list, please let me know. I am compiling this in July of 2007 but dating it in June so it won't come up as a regular blog entry. Also, if anyone wants to be added please let me know. Latest update is October 2008 and I hope I've added everyone.

I'll start with the web sites and go from there:

Patients Perspectives (not in alphabetical order)

Miss Melanoma - Official Site

Other Bloggers with Melanoma (these are not in alphabetical order)

HollyG Tri and be Happy

Becky The Power of You

Jackie Doss

Miss Melanoma blog

Melanoma Moments


Kerri's Cancer Journey

Amy Busby Melanoma Warrior

Melanomanum RuthUK

Operationsunshield Myspace Blog Jane from Maine in NC

Melanoma Awareness (Lee Jordan)

What Now?

Caregiver blogs who continue to update their blog although their loved one with melanoma didn't make it.

Our Fight (Liz and Mike)

Two Lucky (Rusty and Yen archive from melanoma category)

Brad Horstmann has a blog at CarePages

Keith (Stage IV Melanoma), Suzan and Christopher

Their Words Live on but sadly the following bloggers are no longer with us physically.

Bryce D Brown

Arby's Guitar

Charlie Wemkea Blue

Melanoma, Life and other Crazy Stuff (Shannon aka Butterflymom)

Que Sarah, Sarah

Kim from Iowa

Randy Evans

Living with Melanoma (Heather)


Brian Halley Family Prayer Blog

Nancy Solnikowski

Michele Rigney

Monday, June 11, 2007

Carver's Melanoma Links July 2007

This is a new stab at a page with all my melanoma links. The date says June so it won't be part of my current blog entries. To go to my current rambling photo and prose blog click on this link: Carver's Sight or is that Site. To find more than you probably want to know about melanoma go to the links below, organized into some major categories. But first a pretty picture.Note - Janner has finished her site which includes both of our links so you can check that out at Melanoma Resources. It's more comprehensive and logical than mine. Those of you who know both of us will understand why, ha.

Charts, Tables, Staging



Treatment Options (note- also see the articles section)

Stage I Melanoma

Stage II Melanoma

Stage III

Stage IV

Recurrent Melanoma

Cancer Care

Unknown Melanoma Primary

Psychological Issues

Newly Diagnosed

Patients Perspectives

The patient perspective above are from blogs and patnets that give a history of some people's experience with melanoma. Recently I decided to compile a list of all the blogs I have seen with people who have melanoma. The link to that list is on my permanent links or you can go directly there:

People with Melanoma who Blog

Complementary Medicine

Radiology, Lymphatic System, Anatomy

Side Line Issues

Butterfly to the Rescue

Okay, I'll admit it. My post blog title today is over the top silly even for me. However, it felt like my day was rescued by this busy butterfly. Not sure why I was in such a dark mood but I was. I woke up out of sorts and as the day progressed that out of sort feeling grew. I'm a little keyed up about my Thursday appointment with the medical oncologist but no particular reason to be. I don't expect anything beyond the same old, same old, which is GREAT. I'll discuss the CRP issue with him but the bottom line is as long as my scans aren't showing anything alarming I have to assume that the melanoma isn't getting a toe hold in me. I do believe that except at those deep dark places I keep telling to shut up. Part of my problem is optimism about physical improvement. I know that sounds a little nuts but I swear I think that's the problem. I'll have some kind of an adjustment in pain meds or a shot and I feel enough better to do more and am disappointed when I slide back down. It's not that it's that bad comparatively. I think if I could get to a place where I accept my limitations and am grateful for what I do have and stop going up and down, I'd be much better off. It is a worry that the CRP keeps going up because I don't want to take a chance with systemic autoimmune suppressants and I don't need to discuss that with the oncologist to know that's what I think although I will discuss it with him. I'm certainly going to be interested in his take on it. That said, I am pretty sure that unless I get significantly worse physically, I'm not going to want to risk certain types of medications that could help with the chronic pain but might be risky to me as a melanoma patient. Back to the point of my blog title. There I was getting darker and darker when I glanced out my kitchen window to see a butterfly sent to rescue my mood. Yep, just for me. How egocentric is that but I don't care. I'm happy to provide the butterfly with a lovely feeding station and the butterfly in turn seemed perfectly contented to keep eating while I snapped picture after picture. My garden provided the afternoon snack and the butterfly in turn provided the mood elevator. How symbiotic is that! I don't lose sight of what I have in my life. Friends, family, birds, butterflies, flowers. Yep, I sound like some cheesy blurb or feel good message, and the miracle is that it's true. If I can push away the dark cloud and focus on the butterfly I find that I feel much better. Not always easy but for today the butterfly rescued my afternoon.

Thursday, June 07, 2007

Autoimmune Response

I have to admit that if I wasn't pretty busy, I'd probably start obsessing a little bit. Found out Monday that my CRP is continuing to go up. Well drat. As I've mentioned before it's a non specific test which could mean a lot of things. At first the doctor who has been testing it said if it stayed where it was, he'd probably want to refer it back to my GP who would probably refer me to a doc for a cardio vascular work-up. That was my first question when I found out that it was still going up. The rheumatologist said no that the range it's in now is too high for him to consider it might relate to a cardio issue. So that leaves a whole string of autoimmune diseases and cancer. Since my PET/CT scan in March was good news, I'm not too worried about the cancer angle. The problem is that the treatment for so many of the other candidates would be autoimmune suppressants which wouldn't be a good idea. It's one thing to have an occasional steroid shot but quite another to do systemic steroids. I'm not willing to take that chance without something life threatening going on. The doc said to be sure to mention it to my oncologist and for now we're sticking with the status quo. The rheumatologist will keep ordering blood work but unless I get worse, there isn't much point in doing a lot of tests to try to determine if I have one of the autoimmune diseases because the treatments are counter indicated. That's the gist of it. I'm glad I have a regular follow up next week with the medical oncologist I started seeing in December. Funny how it's working out, I see the rheumatologist again in September, and a week after that appointment I see the surgical oncologist who is following me so I continue with another cycle of rheumatologist and oncologist appointments but it's different oncologists. I'll also get more blood work done in July as the rheumatologist re-tests every two months. It's ironic that the reason he tested the CRP to begin with was to err on the side of caution but he was certain that I had a vitamin D deficiency. I was referred to him on the slight chance that I might have lupus. He said I'm sure your vitamin D is low because of the balance issues and bone pain but I'll test the CRP as a nod to making sure nothing else is off. Since I did have a low vitamin D level, he thought his instincts were correct and the fact that my CRP was elevated didn't mean that much as so many different things can cause that but at this point with it continuing to go up rather than down over a 10 month period, it's more problematic. The way it stands now though is if I can continue to do okay with my current pain management, there isn't much point in trying to dig too deep into why I'm having this funky blood work because the treatments could be risky for me as a melanoma patient. When I wrote my Sunday blog entry, I thought I was used to this stuff but it wasn't reassuring to find out Monday that the CRP is continuing to get higher. I'm glad I had fairly recent scans because it makes it easier not to worry too much about whether it might be connected to the cancer. I googled with melanoma and autoimmune and was surprised to read about a treatment for metastatic melanoma which was in trial where they injected tissue (not sure if tissue is the right word as I'm doing this from my failing memory) from people with autoimmune disease into a melanoma patient to try to elicit a response that would fight the cancer. That certainly adds to the hunch I've had for a long time that my body has mounted it's own little defense. This is all supposition but it does make me wonder.