If I had but asked the questions . . .

I was reading through the TopHealth newsletter, which is stuck in with my pay checks, today and it included 7 questions to ask about surgery. Number 2 on the list was: How will this operation help me? and 6 was - What if I don't have this operation? Number 5 was - What are the risks of having this operation? If I had asked my doctor those questions prior to my groin LND, I probably would have had the surgery anyway. It would have been nice going in to realize that the SNB as well as the LND are primarily for staging. It would have been nice to know that there has been no proven statistical benefit to removing non clinically involved nodes. It would have been easy at that point to have convinced me of the wisdom of the surgery but I would have liked to have been told up front that it was not a treatment of any kind and did carry a risk of chronic pain. I can see the doctor not wanting to go into every remote possibility but at least the broad strokes would have been nice. I didn't know enough to ask those types of questions myself. It never occurred to me to question if there was any benefit of the surgery.

What I had trouble with was the way it all happened so fast. I realize, however, that without all the issues I have had with chronic pain etc., I wouldn't be second guessing. It would have been nice if someone had told me up front that some studies suggest that the SNB is of most benefit to people with thin and intermediate primaries. The point being that you already know someone with a very thick primary should be followed closely. There is a study I'm linking about the role of lymphatic mapping with melanomas over 4 mm being unclear on the off chance someone in a situation like mine reads this and wants to check it out. After all is said and done though, I'm glad I did have the surgery because otherwise, I would have second guessed that decision forever. I'm not suggesting I shouldn't have had the surgery I only wish I had known more up front.

I got the standard of care and beyond it for that matter. My surgeon is good at what he does. My body's reaction to the surgery couldn't have been predicted. For that matter it's not even clear if the surgery was my problem. I healed well. My scars are fading nicely away. I never had an infection. My only post surgery problem was drainage but that was a minor matter in the scheme of things. As to my ongoing problems, I may very well have had the problems without the surgery. I still suspect if I don't have active cancer, I'm having a weird autoimmune response. I mostly wish that I had been told more up front.

I'm ready for winter

I think I wrote about my desire for winter on the sight that crashed, or rather our lack of a well defined winter this year. For quite a few years it looked like my part of NC was having longer winters, and more snow, until last year. nada. I missed it. I like 4 seasons. In general I like change. That works out well where I live, some of the time, although our summers are a little long for my taste. We have always had overlap in seasons and weird weather. Sometimes it snows easter and on the other hand, sometimes I can go out for my paper barefoot on Christmas day. As a rule we have at least a spell of each season. I think we had a couple of nights in the single digits this winter which is pretty unusual for here but we didn't have a stretch of days and nights staying below freezing and we didn't get any snow accumulation. I'm ready to begin again. I want to go straight into fall and then have a longer than usual winter, followed by a spring that brings me alive. Then a short summer for a change. It could happen. Anything is possible when it comes to North Carolina weather.

We didn't have a lot of snow in 2005 but we did have snow mid March. On my way with HB to get the results from my SNB it was another of our wild thymes. She had green beads for us to wear in honor of St. Patrick's day and on the way to Chapel Hill it started snowing. I remember the patient counselor checking on me while I waited on my doctor. I felt pretty bad which was obvious but she said, at least you felt up to the green knecklace for St. Patrick's day. I explained about my friend. She felt up to thinking of beads for both of us on St. Patrick's day.

We had a wonderful spring in 2005. In spite of the ongoing issue with drainage and the continuing need for me to have a drain in the groin area, on and off, for NINE WEEKS; I enjoyed that spring. I built up to longer and longer walks and I even planted a scaled down garden. I enjoyed myself in general. That was before I went on my melanoma research binge. I did some writing not connected to me and my melanoma. I was pushing for a full recovery and intended to put melanoma behind me. That was sort of my honeymooon period after my dx, in spite of issues with too much lymph fluid. I had all sorts of plans and was at a good place mentally. Ah, to get back there or at least to find that new normal I keep seeking, whatever that might be.

Clouds, memories, pain

The dirty spot on the sky is either a bee or a bird. I can't tell which but I was trying to photograph a very fast bird and caught something, but hard to tell what that something is. I love August and September skies with the exceptional puff ball clouds they often have. When I as a child, we always went on vacations during August. I think my favorite part of road trips was watching the amazing clouds and weaving stories out of what I saw. On my way home from getting 3 MRI's, I was in rush hour traffic but was saved by gorgeous clouds which I could watch while I waited for the traffic to move.

I remember driving my Dad to Duke when he was at the end of the end of his long run with congestive heart failure. It's only about a half hour from where he lived but was stressful at first because I frankly wasn't sure he'd live to the end of that trip when we set off. As it turned out he lived to go home and had two months more with us. He had an appointment for check in at Duke, in a week, but his condition went from bad to worse and I was told to bring him to ER to check him in through there. Someone met us and got him right in a room. On the way there, he was a little confused and briefly thought we were going to the mountains. We both enjoyed the clouds and discussed past trips both to the mountains and to the beach with similar skies. It was an oddly pleasant trip, mostly because of the beautiful clouds and memories.

I am more myself now that the pain is under control. I had reached the point where I thought anything was better than the pain. Part of it was my fault. I could have called my pain doc a month ago and told him I needed stronger pain meds but I like to have as little to do with him as possible. He's not looking for causes like my other doctors are and I try to avoid him and any personality conflicts. Also, I've been scared to keeping upping pain meds for fear I'd miss something important (early warning signs). At this point I realize no matter what's wrong with me, too much pain makes me lose myself in unacceptable ways and I have to stay on top of it in order to stay on top of the rest.

New PCP, then scans, scans and more scans

So, after initially being relieved that the lump on my thoracic spine gave me something solid, and which I assumed was a ganglian cyst, and would be a benign answer to increasing pain; I read too much. Then I woke up this morning with unbearable pain. Reading too much was finding out that sometime melanoma is mistaken for a ganglian cyst and here I was, not even at the docs yet deciding what it was. Maybe I was wrong. I hope, of course that I'm right about the ganglian cyst. However, due to the increasing pain, I called the PCP bright and


early and got right in with a new one. She was great. Looked almost as young as my daughter which was odd but of course she has to be older than 21 unless she's quite the protege. The thing I liked was that she was very polite, kind, thorough and decisive. She gathered the information, checked out other things, then felt the lump. She excused herself, went to call my oncologist. She couldn't get him because he was in surgery but she talked to his NP and the plan unfolded. To make a long story short I got a thoracic, lumbar and pelvic MRI this afternoon. The PCP wrote me a script for stronger pain meds. She is going to call me Monday and let me know about the scans and whether I need to see my ONC before my regular appointment in early September. It's amazing how much more level headed I am with adequate pain meds.

Missing the bird songs

I am up early and the birds aren't singing to me. It is so dramatic the difference between the times of year they are up from the middle of the night on, to the times when they sleep in. I miss hearing them sing first thing. I am going to call my PCP as soon as their office opens and I sort of dread it. I miss the days when I had a family doctor who knew me very well and was a family friend. I had that until I was in my 30s and it wasn't such a big deal at first because I do have a gynecologist who I know well and can count on. As long as I don't have a lot of things to manage, I can just go to my gynecologist for my annual physical. The problem is at this point I have a string of specialists but no one is managing the big picture and things keep cropping up. Oh well, I'll figure it out no doubt.

I used to start my day for years in bed with coffee and a notebook, listening to the birds sing, writing about whatever was on my mind. When my daughter went to college, I had a reverse nesting binge. I went through decades of notebooks I stored in a trunk and tried to get out what I wanted to keep and get rid of the rest. I didn't want so much left behind when I was gone. I was young, still am, at close to 49. Even in 2003, I had a sense of wanting to get my house in order for when I was no longer here. Didn't get very far except with the notebooks. I kept a few in my handwriting but most I discarded and I typed up journals on my computer of what I wanted to keep. As it turned out most of what I wanted to keep was my record of when the birds were up: notes like - I can't sleep, it's 2:00 am and somebody is singing to me. I guess I'll see if I can figure it out from my bird book. If I woke up at 5:00 am and they weren't up yet, I would make note of it and then record when they were up and how many different songs I identified. I also kept a record of my evolving secret garden. All the anxt over friends, my music, my job, family, even goals and desires were gone, poof. I kept a log of birds, plants, walks, some trips but little else. I did keep a few of my political and philisophical essays though doubtful that they were worth keeping. Now if I write in my notebook at all it's a few sentences every other week.