Thursday, August 31, 2006

From the crash

It's funny how I keep flipping through my blog photos trying to find some of my favorites that are missing. I realized that I posted my purple cone flowers, sunflowers, and feather rose before my big blog crash but didn't go that next step of putting them back on again. I guess I'll do that now. I like the idea of getting some of my favorite shots of my garden in one spot which I have never done with my computer files. Such a relief to hear my daughter sounding so good today and know she's already feeling up to getting reading assignments from her classes. Someone mentioned that if she has to miss a week of classes, it's better that it's the first week as opposed to the last week. I don't remember who said that but they are absolutely right. Also a huge relief to have my oncology appointment out of the way and to have a plan. I'll be so glad to get the lump off my back and I'm glad my oncologist is who is going to do it. I'm not crazy about getting a PET/CT scan to decide about the groin but I understand why he wants to do that. So things are moving along. I hope the evaluation at the pain clinic tomorrow goes well. I think that may make the biggest difference in the way I feel of anything. If I have a good pain management plan with some flexibility that includes conventional and alternative methods, hopefully I'll start to be able to function without so many medications. That would make a huge difference to me. I used to have a fantasy about hiking from Georgia to Maine on the Appalachian trail. Maybe my new fantasy will be to hike from the mountains to the sea on the currently being finished Mountains to Sea trail in my home state of NC. That's a pretty fair trekk. It's a 900 plus mile trail so not exactly a whimpy goal. Still, more manageable that hiking from Georgia to Maine.

One down

I like some of these fuzzy photos that end up looking a little bit like paintings. The irony is all of the paint like ones I took were with an inferior digital camera with low resolution settings. Made it through my oncology appointment and have added to the plan. I'm getting a full body PET/CT scan next week and on September 19 he will excise the lump off my back. It's an out patient, local anesthetic surgery. No biggie. He'll decide about the groin after the PET/CT scan. So the appointments are lining up like little toys on a tight rope. Tomorrow pain clinic; Next week is PET/CT scan, P.T. outpatient clinic, and gyn/yob, oh my. Then a one and 1/2 week break before the excision to get the monkey off my back. I'll roll with the punches if my daughter can recover from her appendectomy without further mishaps.

Oncology appointment and such

Getting geared up for my oncology appointment which I hope goes well on all fronts. I hope the rapport I have always had with my doctor hasn't been compromised by my pushing. I know I have every right to push and try to manage my own care because it's not like anyone else is going to do it. In spite of the fact that the cancer clinic I go to makes a point of saying, in their literature, that they assign each patient a primary physician and that they take the team approach regarding all aspects of your care, not just your cancer care, it's not like that in reality. Part of it is I only go to my oncologist at that center. My neurologist, dermatologist, and pain doc are in Raleigh which is easier for me than having an hour's drive for all of my doctor's appointments. I think, however, if all my doctors were at the research hospital where my oncologist is, the communication between doctors would be better. Actually, communication is nonexistent except between my dermatologist and oncologist. Those two do pass reports back and forth. I don't want to change neurologists because he is the most thorough doctor I have but having him be a private practice doctor, removed from the cancer clinic I go to may be an issue. I am hugely relieved that my daughter is okay. That is, as always, the big thing for me but I'm also aware I won't be any help to her if I don't take care of myself. It's funny the photographs that appeal to me. Sometimes I post funky ones that aren't anywhere near as good from a photographic standpoint as others I could include on my blog. The reason I select some is because they have a back story but unless I tell the story they're silly looking. It's not like I expect anyone to actually read through all of these entries anyway. The main thing from the stand point of sharing with others is the photograph but I appreciate the comments I have gotten from friends and family who have been here. One unusual source of friends I've had with my melanoma ordeal are the ones I've met through the MPIP. I am amazed that at my age I would participate in a BB, something I never understood when my daughter did it, and that I would meet so many intelligent, supportive, kind people. I have a great family and am lucky in terms of some old friends I've always been able to count on, including an amazing neighbor who has been great to me when I'm under the weather. I don't know how to express what the MPIP crew has meant to me. It's partly having a network of friends who have been through similar experiences to mine, in terms of having melanoma, but it's also meeting a diverse and interesting group of people who are so giving. I hope I can make it to one of the MPIP gatherings. I've already met two people from that sight in person. I guess I better collect myself and point my car towards Chapel Hill.

Wednesday, August 30, 2006


What a relief. My daughter is being released from the hospital after a day with an MRI of the brain, CAT scan, EKG, and being put on the heart monitor. Turns out she has a complex migraine, she lost feeling on one side in the hospital which I didn't know about until it was over. I am going to get instructions on what to discuss with the heart specialist she saw at Duke. I asked to speak to the ER doctor but she said she could tell me what I need to know so I'll start that process of reaching her doctor here after my oncology appointment. What a lot of fun, NOT. But I'm so thankful that my baby is okay, the rest is nada.

Daughter and tomorrow

I started to work pretty much straight from waking up and then was going to write a short blog entry. Mostly wanted to blog because posting my garden photos gets me looking back through my garden and is a boost in an odd way. At the moment, my garden is in late summer mode and not as fresh as it could be but my photos stay fresh indefinitely. I also had my oncology appointment on my mind. That's tomorrow. Everything else was driven from my mind when I got a call from JF's school to let me know she was back in the hospital. I talked to her and she sounded good. Not much to say yet as the doctors are sorting it out. It's probably a reaction to all the post appendectomy meds she's been taking, often on an empty stomach because she doesn't feel like eating. However, with the PFO they have to be extra careful, as well they should be. She was going to let me know once she knows more and I've made sure the people at her school know to give us the word and we'll be there in a shot. She told me not to come yet. I may get BF to go anyway and wait until after my oncology and pain appointments to join him and JF, if we need to be there. I wish I could get her home but she says she doesn't feel well enough to travel and it's better for her to finish up the recovery at school and go to classes after that. She mentioned that the ER doctors said she may have had a mini stroke and I was relieved to hear that isn't even like a minor stroke but is something people sometimes have and don't even know they are having them. In her case though I still suspect the dizziness and fainting are more likely from taking pain meds on an empty stomach when she's not used to taking pain meds. She's one of those people that rarely even takes a tylenol. If I'm not blogging for a few days it may mean my mommy radar goes into overdrive and flies me to Maryland for a few days. I think that's unlikely given the information I have so far. My daughter said not to come yet and I do need to try and go to my oncology and pain clinic appointments unless I can be of any actual use to her.

Tuesday, August 29, 2006

Friends don't let friends buy annuals but I let them plant them from seeds

This is from Tony Avent's garden catalogue covers/T-shirts. I don't know him personally but we are the same age and went to the same high school, until I got shipped off to boarding school. I'm exagerrating, I stupidly wanted to go away to school. I figured that nowhere could be worse than Raleigh. I was wrong. I enjoyed Tony's column for our newspaper and when he stopped doing that and opened the amazing garden and nursery he now has, I was very pleased. He has open houses several times a year, where you can tour his garden and buy from his greenhouses. His main business though is mail order. He teaches classes as well as gives lectures on perennials across the U.S. and goes on plant collecting expeditions throughout the world. He has a great sense of humor and I love the, Friends don't let Friends buy annuals T-shirt. However, I do plant annuals and many of my annuals plant themselves from seeds left behind so it doesn't get much better than that. I should try to go to the Plant's Delight open house this fall. BF and I went the fall after all my icky symptoms hit and I felt like I was wandering around Tony's phenomenal bog garden like a drunken sailor. That was when my coordination was most effected before the neurontin built up to a high enough dose to control it. BF didn't mind being seen with me and I doubt the plants cared. I hope it's okay to put these graphics on my blog but hey maybe someone that stumbles here will follow the link to Plant's Delight Nursery and order some plants or even a T-shirt. The outlaw gardening catolgue cover was one of my favorites. I have a T-shirt which BF bought for me from Tony's which has a multicolored frog and says, It's not easy being variegated. Ain't that the truth. The older I get the more I understand that it's not easy for anyone. Some are just better at covering up than others. I've always tended to wear my life on my face in plain view and the older I get the more my attitude about wrinkles will be put to the test. I always loved heavily lined faces if the eyes still held a smile. Heavily lined faces on the defeated are no fun but otherwise are interesting to me. The older I get the more I understand the other side, involving wrinkle cream and extra care. It's one thing to appreciate the sings of age in others but a totally different proposition to appreciate it on my own face.

mother's rose and onward

My mother loves yellow roses and I planted a yellow rose bush for her. Turned out that was her last year on earth. Her roses always bloom on her birthday much like my daughter's daffodils always bloom on her birthday. Doesn't hurt that my daughter was born in March and my mother in June. Such a relief that my daughter is doing okay. What a way to begin a semester. I'm still feeling much better, although sedated, with my new arsenal of meds. I hope that I'll reach a point where I don't have to take anything. Perhaps the physical therapy I'm starting next week will help. The P.T. I saw before, who was mostly working on scar tissues and myofacial knots, helped in so far as it went. The problem was my P.T. helped me get physically active which in turn aggravated the situation and I was worse than before. She warned me to take it slow so it wasn't her fault. Also a big part of what she did involved heat and estems after the deep massage and with my nuerololgical symptoms, that was beyond uncomfortable. The new P.T. clinic is at a hospital outpatient clinic and my doctor prescribed specific things like back, lymphedema, and balance. I suspect that will be somewhat helpful especially in conjunction with the pain clinic I start on Friday. My biggest problem now is allowing myself optimism. I have always tended to be optimistic but disappointment corrodes that. I realize how fortunate I am. At diagnosis they thought there was a good chance I was already stage four because of the confusing pathology on my nodular melanoma. I went into my first PET/CT scan not knowing what I was facing but my attitude was, I don't care what this shows, I'm not checking out anytime soon. I was almost belligerent in my initial optimism. Hopefully I'll get that back.

Monday, August 28, 2006

Snug in her dorm, Questions for my ONC

Quite a relief to talk to my daughter once she woke up from sleeping for 10 hours after she got back to her dorm from the hospital. Of course it was a comedy of errors and not so comical if you're in pain. Finding a pharmacy that was open at night on Sunday was a challenge. The hospital pharmacy was closed. The doctor forgot to write his number on the script so the pharmacy they did find had to call the hospital and verify it. All this time my daughter who had an appendectomy at 8:00 am that morning was sitting there doubled over. There had been security issues at her dorm and her key card didn't work so she had to sit on a bench until her friends could get someone to open up the dorm and let her in. But all's well that ends well and she got to sleep 10 hours straight. That wouldn't have happened in the hospital. The daffodil reminds me of when JF was born. We went to the hospital with ice and snow on the ground and once JF was born, our daffodils bloomed. They always bloom on her birthday and the picture I am posting was one I took a few years ago where they bloomed in the snow and ice like they did the day she was born.

I am trying to come up with a list of questions for my doctor when I see him Thursday. Want to take bets on whether they'll take one look at my list and run in the other directions.

1. Can the “supposed lipoma” be tested with FNA today?

2. Can I have an ultrasound of the region where they can’t rule out melanoma in the groin?

3. Can you excise the supposed lipoma and get some tissue from the questionable groin area in one surgery?

4. If my ongoing symptoms are part of an autoimmune response, are steroid injections for pain risky?

5. If I do have an autoimmune response set up to fight MM, is it possible that the 4 cm mass in the inguinal region which was imaged a year ago and which the MRI said was “consistent with a tumor recurrence” and the PET said was “worrisome for an FDG avid malignancy” would have gotten smaller on repeat scans because I’m in that small percentage of people who have untreated melanoma tumors that get smaller?

6. My last PET/CT scan (March 2006) said that the FDG in the inguinal region was most likely due to changes due to surgery. My PET/CT prior to my WLE and SNB said the same thing and I had 2.8 mm of melanoma removed which was said to be consistent with residual dermal melanoma. If the issue in my groin is small, wouldn’t that be the reason for the same language?

7. I was told that I would get an annual MRI of the brain during my six month check up in August of 2005. Since my neurologist had done an MRI as part of my work up with him a year ago, I didn’t ask about that in March when I got the PET/CT scan. Since it’s now been a year since I’ve had an MRI of the brain, will I get one as part of my follow-up?

8. If the current issues turn out to be ruled out as recurrences, can we establish a plan to account for some of the oddities of my case? It will be hard for me to go by symptoms since my multiple symptoms are managed by strong medications.

I'm making progress, I'm returning to my blog to delete one long and one short question. Who knows by Thursday I may have it down to something reasonable.

Daughter, this week, old man on a throne

I will be glad to see my daughter's IM name pop up on my buddy list. She opted for leaving the hospital last night just shy of 12 hours after her appendectomy. Since it was done with a laporoscopy, I guess it was more like my laser treatments for endometriosis than it was like abdominal surgery when my appendix and ovarian cyst came out. Even so my comfort level would be higher if she'd spent the night in the hospital. She even said most people do spend the night, according to the doctor. In her case having come in the night before which she spent in ER until they checked her into a room after the CAT scan showed it was her appendix, I understand that she was ready to leave. However, my mommy radar is beeming to Maryland and wishing I was physically there. I'm doing much better this morning in terms of the sedating quality of my latest med. Instead of taking it right before bed, I took it at 9:00 pm which makes a noticeable difference in how I feel this morning. This is a big week for me. I go to my oncologist and have the initial evaluation at the pain clinic. I am hopeful that both of these appointments will be moving me towards help. I'm not sure what I want from my oncologist. I'm leaning towards an ultrasound of the groin and FNA of the subcutaneous "supposed lipoma". The sooner the lipoma is laid to rest the better because in the unlikely event that it's a subcutaneous melanoma metastais, I will be stage IV. I'm not expecting that and I know my doctors aren't suspecting that but even with a small chance, I want it to be determined as fast as possible. In terms of the groin, if that's melanoma, I suspect it's the same issue that showed up 6 months after my dx and I further suspect my autoimmune response is what has made it show up smaller on repeat PET/CT scans. All well and good except for what that autoimmune response has done to my quality of life. I am such a barterer with the powers that be, even though I don't believe in that kind of greater power. I do believe in the great unknown. In times like this though, I start bargaining with an old white haired man sitting on a throne dispensing reprieves at will. If my daughter will be okay, I'll roll with the punches about me. She's had a PFO diagnosed this year and now her appendix. Give her a break already. The minute I think like that though I remember the children and teenagers with melanoma and what their parents went through. Good thing I don't believe in an old man sitting on a throne because I'd kick his ass if I did. I do, however, believe in something beyond what we can see, touch or feel and I send those good thoughts out and hope for the best.

Sunday, August 27, 2006

Blog addict?

I think I'm becoming addicted to blogging. Not sure why I don't do this in my notebook or on computer files off line. Strange. I love cosmos and I hope the heat doesn't zap the cosmos I have. I was disappointed that my daughter ended up deciding to go to her dorm from the hospital tonight after having an appendectomy this morning. Her friends called to say that the doctor had said if she could eat she could leave tonight, if she wanted to. She was able to eat and wanted to leave so they packed her off with a pain med script. I'm sure she'll be fine and she has great friends at college but it's still pretty nerve wracking. She sounded good but hoarse when we talked today. That's why her friend called. JF is trying not to talk much because she's hoarse from the general anaesthetic. It still seems very odd that my daughter would have surgery at a hospital in Maryland and I would be in NC. I know at 21 she's an adult but it feels weird to me. Nothing I could do if I was there but I can't shake the feeling that I should be there. Hopefully she'll be pretty well recovered in a few days and will have a good last semester of undergraduate school. What a way for her to start the year. Boy howdy. I've heard of beginning the new with a bang but that's ridiculous.

Relief, Castor Bean plant

What a relief that JF is recovering well, resting, and will be spending the night at the hospital. Hard to believe she had an emergency appendectomy her first week back at school. At least with the laporoscopy surgery her recovery time should be swift.

Castor bean plants are a favorite of mine but I stopped growing them after I was told how poisonous they are for animals. I grew them for two years and they got enormous. One was close to 18 feet tall from two seasons of growth before it got zapped in the winter. What I did was grow them one season, transplant into huge pots and put them in the greenhouse for the winter and then planted them back outside the next spring. The problem was, after two growing seasons they were too big to fit it the greenhouse even if I had dug them up and found a monster pot. The cool thing was they self seeded and I was all set for a third year of castor bean plants until a friend told me about the risk to animals. Too many of my neighbors dogs occasionally get loose and come into my back garden and I was told they would be at risk. I also have a ton of cats that hang out in my back garden but I doubt they'd eat castor bean seeds. Not sure if any animals would be at risk but it's not worth it so that was the end of my love affair with castor bean plants. I did enjoy them so. I hope JF has a good last semester at school and isn't thrown off her rhythm too bad by the appendectomy. I'm grateful that she has so many friends that are visiting her in the hospital. It feels so weird for her to have surgery away from home.

Curves in the road

My daughter had an appendectomy at 8:00 am this morning and I'm waiting to hear how it went. It was performed in a small hospital outside Baltimore where she goes to school. She called before going to the hospital and I requested that she please go to Hopkins or one of the other famous hospitals in the area and she said her friend who was driving her wouldn't be able to find Hopkins and that it was probably going to be nothing anyway. Then I heard that her blood work was normal and she didn't have a fever but was waiting on the CAT scan which would probably be very late as the hospital was busy. She said that I should go to sleep and she or one of her friends would leave a message on my cell phone. I did go to sleep like a log but when I woke up at 3:30 am instead of going back to sleep right away I checked my cell phone messages and both she and a friend had left messages telling me that she was getting an appendectomy at 8:00 am in the morning. Incredibly enough I went back to sleep and shortly after I woke up again at 7:00 am my daughter called to explain it was going to be done with a laporoscopy which was a huge relief. When my appendix was removed it was part of an abdominal surgery. At first they thought it was my appendix and then found out it was a humongeous ovarian cyst but while he was in there the surgeon took my appendix too for the heck of me. I had no idea they could do appendectomies with a laporoscopy. She should be back in her dorm either tonight or tomorrow and fine for classes on Wednesday. I had assumed until she called it would be much worse as I was out of work a long time when mine was removed as part of abdominal surgery. I wish I was there but she said she's fine and had 8 friends in her room last night and they are returning after she has time to wake up after surgery. I'm sure the hospital where she is being treated is fine although my comfort level would be higher if she was at hopkins. I love the picture of her I am posting above from 1999 when she was warming up for a modern ballet recital. It captures a moment in time for me. Hard to believe that was 7 years ago. I have a ton of photos of her dancing in the house as a child that are wild. Some when she was about 5 and was dancing in a slip with her hair twirling wildly. She broke her collar bone falling out of a tree at five and had her arm in a sling but was determined to dance in her recital. Her doctor said she was recovered enough to take her arm out of the sling for the dance if she was careful.

I just heard from her and she is doing fine, back in her room. She said the doctor told her most people do spend the night in the hospital but if she's doing exceptionally well she can go home tonight or rather back to her dorm. I told her to spend the night in the hospital if she can because they will do a better job with pain relief in the hospital if she needs it. She said that the pain isn't even as bad as it was prior to surgery which is a great sign. The second picture in this post was taken the same year as the dancing one. We went to Williamsburgh and had a blast. She went not to long after that with friends but I was glad I took her although I wouldn't have if I'd known she would be invited to go with a bunch of friends so soon after we went. Life is so unpredictable. I never would have guessed that she'd have surgery before me. Mine will be a simple excision on my back of the subcutaneous mass assumed to be a lipoma and maybe a biopsy of the groin if the dubious area has something specific my doctor can go after. That was at the forefront of my mind and now it's pushed way back. If my daughter can recover quickly and not have any more health issues, I will take what comes my way. She never heard back about the cardiac MRI which is probably a good sign but the doctor at Duke where that was done regarding the PFO (congenital heart defect) said he or his P.A. would call and they didn't. I am going to see if my daughter minds if I keep calling and bugging them about it. I can say she just had an appendectomy and isn't up to calling herself, will they please call me.

Saturday, August 26, 2006

Summer heat grows old

I am so tired of hot weather I could scream but I am all too aware of how ungreatful I am. I have an air conditioned house and an air conditioned car. Only a small percentage of people in the world have ever made a telephone call. I'm pretty sure I have that right. I can't remember the stat but it was staggering. I bet the number of people who live with hotter days than I do without air conditioning would astound me. When I was a child we had an attic fan and big oak trees surrounding the house but no A.C. until I was older. Not sure when but I remember first getting a unit A.C. in our kitchen and eventually central air. Since I ended up in my home town it was probably similar weather to what it is now but it didn't seem as hot. I'm so conditioned to comfort that it's hard to imagine going back although the total dependence on artificial climates can't be good for the environment. I love the few weeks on the opposite ends of summer when I can open the windows and don't need anything but the wind. We lost power in an ice storm in 2003 for 10 days. Some people got their power back sooner but I toughed it out at home, not wanting to leave my new bathroom. I kid thee not, I wanted to keep the water dripping because I was in the middle of a bathroom remodeling project so I stayed home while my daughter bailed and stayed with friends who had their power back. I got a little nutty here with the house temperature around 30 degrees farenheit except in my den/office which I kept a little warmer with the fire place. My bathroom contractor brough me a kerosene heater at one point too. It's staggering to think about the fact that most people don't live in houses with central heat and A.C. I'll have to dig up those stats and refresh my memory. Once I start thinking about something like that it drives me nuts until I find the answers but I can't remember the answers once I find them so why do I bother? Sort of like that with all my melanoma research. I remember broad strokes but half of what I read I forget before I finish reading it. I also glass over when it gets too technical. That's why it's such a joke that I try to manage my care. I'll never retain the details. I retain some of them but what I glass over about is probably the important part. I do feel better now that I have a PCP I like. I never got over my family doctor retiring. Half the time I didn't have to even go see him. I could call and talk to him over the phone and he'd call in my antibiotic script which was the main reason I needed a doc when I was in my twenties. I smoked and had chronic bronchitus frequently back then. After my family doctor retired I didn't need a doctor except for my gynecologist, for the most part, but it's been a problem for me not having a PCP this past year. No one has coordinated the various specialities for me and try as I might to do it myself, I feel like I spin wheelies. The old LP keeps whirring round and round in my head with a corny song I can't recall.

Green houses and Dr. Pain

Although it looks almost blue in this light, I painted my storage building green. It is attached to my greenhouse and cracks me up that my storage bulding is a green house and my greenhouse is not green unless filled with green plants. The storage building has the same roof as my greenhouse and lets in a lot of light. My friend who built both structures thought it would be good to have the option of putting junk plants in the storage building in the winter if I ran out of room in the greenhouse. I have occasionally used it like that but for the most part it has become a junk room minus the junk plants.

I'm filling out the forms, which I printed off the internet, that the pain clinic I go to next week require. They want to know everything. It's a four page form. The irony is they ask for precisely the information which I volunteered to Dr. Pain on our first meeting. Dr. Pain said I was obsessive and to stop doing that. In other words he made me feel bad for compiling that information which I thought would help him assess my case. The other thing that pisses me off at Dr. Pain is that he probably kept me from getting into a pain clinic the first time by hanging fibromyalgia around my neck. The pain clinic does treat people with chronic pain after surgery but they don't treat people with fibromyalgia. Dr. Pain very quickly jumped on FibroM without taking the time to address the complexities of my situation or the fact that I don't fit that in key ways. The problem is when I got my main neurologist to refer me to a pain clinic because Dr. Pain and I weren't a good fit, Dr. Pain had already written me up as a fibroM patient. Since my main NEURO and Dr. Pain are in the same practice, his notes were in with the rest for the referral. He even said that the reason the pain clinic didn't take me probably related to the fact that I had fibroM. I told him I had tried to get in there after our first meeting didn't go well. He did make an effort with me after our rocky start but the sticking point is that when I finally was able to address the fact that there were key ways in which I didn't fit fibroM, he said that he agreed but it didn't matter what was wrong with me as long as the pain was managed. It mattered to me. It mattered because my PCP immediately got me in at the pain clinic once the referral was handled in the correct manner. It mattered because I was fearful of masking the pain so much that I wouldn't know if I had symptoms of something more ominous than pain. Hopefully I won't have to see him again.

Friday, August 25, 2006

Laughing at Links and my Life in General

Hopefully by this fall I'll be rehabed enough to rake up a big leaf pile to fall back into. I love leaves. If I injure myself falling back into the leaves, I'm all set. I got my first appointment coming up in two weeks at a rehab clinic to work on back, lymphedema and balance. Next week is oncology and pain clinic. My annual gyno physical is the day after my rehab appointment. That had me mildly amused as I glanced at my appointment book but what got me hysterical was looking at my links. I have so many pages bookmarked that I can't ever find anything. I have a bunch of folders to organize the links but the more folders I add the more confused I get. My bright idea was to start putting a hodge podge of links on my blog. That way I'd have one long link list of fun and not fun sites which would include ones I wanted to be able to go to easily for phone numbers or to refresh my memory about what they say they do. So today after I found out I got into the rehab and pain clinics I added their websites to my list. What got me hysterical was the way my blog's link list has expaned to be as unmanageable as any of my other booksmarks. I have firefox bookmarks and AOL favorite places and now I have my blog's hodge podge. Sort of like my computer and paper files. With paper ones I have a file cabinet in my office/den and then another in my bedroom where I usually pay bills. I never can remember which file cabinet houses which files. My computer files are beyond bad. My work folders are fine because they mirror the work network. My personal ones are ridiculous. I wonder what it would take to get me organized. In my own way I am organized. I'm so paranoid about how flaky I am that I have tons of reminders and notes. You know, the kind of notes that say: don't forget to not forget what you've forgotten what is, or something like that.

In the present

I know I spend way too much time thinking about what was. I think about where I was at physically and mentally when I got my melanoma dx. I wanted to go on an outward bound rock climbing trip when I turned 50. I wanted to run a marathon although I knew a half marathon was a stretch but I like to reach high and that way the mid way point is still an accomplishment. 2007 is the year I turn 50 and I am working on new goals. Perhaps climbing the oak tree in front of my house is a start. I've never climbed that tree as long as I've lived here because getting to the first branch took upper body strength I didn't have. When I was a kid I climbed every tree in sight. In high school, during lunch, I would climb a big oak and sit in a branch and read until someone else joined me. Usually before too long, friends would arrive and smoke would fill the air. Took me a long time to drop the smokables but I finally did.

I posted pictures yesterday of my corn rows. The second picture in this entry is that same corn row minus the corn. Lots of queen anne's lace, purple cone flowers and tall grasses. Cleome and coriopsis have sprouted up recently and those plants should be joining the mix soon with their colorful display. Hummingbirds, gold finches and butterflies can be spotted in what was once my corn row. I like it. I like the diversity and the wildness of it but I miss fresh corn. The best way to eat corn if you want the maximum sugar is to start the water boiling, go pick the corn and drop it in the boiling water right off the stalk. My mother taught me that trick. She told me about how to do it once I started growing corn back in 1979 when I was still in the duplex I rented an apartment in. I married the man in the other apartment in that duplex and we stayed there for 4 years until we bought the house I still live in. Our landlord let us knock a hole in the wall between the two studs and convert the duplex back into a single family house which is what is orinally was. We had two kitchens which was fun. We usually used the kitchen on BF's side because it was bigger and what was his bedroom was the dining room and the living room was the living room. On my side we used my living room as a den, our bedroom was on that side and we had the small kitchen off our bedroom which was especially nice in terms of having an extra kitchen.

We got to know each other gardening. I started a garden in the back yard. I dug an irrigation ditch around a huge area and dug into the clay and enriched it for my garden. I ran out of steam before I had cultivated all the land within the irrigation ditch so BF asked if he could plant a garden beside me where I left off. We started going on camping trips together, fell in love, and got married. I was literally the girl next door and he the boy next door.

I started this post with the idea of staying in the present but for whatever reason, the past keeps cropping up. That's not necessarily bad as I have good memories for the most part. Funny to live long enough to feel that way about it. I used to have so much anxt I couldn't see the good memories for the trauma. No more. I can truly look back with a sense of calm and pleasure on what once was. Now to continue making good memories for a long time to come.

Thursday, August 24, 2006

Lettuce, lettuce and more lettuce

I remember picking this lettuce during the summer of 1999. To be honest I only know it was 1999 because the photo disc says so. It was going to be too hot for the lettuce soon so every morning I picked bags full for friends and neighbors. I ate a lot myself but there is such a thing as too much lettuce. I washed it and spread it out on a beach towel. I picked an extra large amount because I had to go by my office and thought I would take lettuce to some of the people I worked with. Once I spread it out on the towel to dry I thought to myself, that's pretty enough to take a picture of. Crazy thing to photograph. A big pile of lettuce. Now I'm inspired. This weekend I'll plant my garden boxes with lettuce. This is the perfect time. The seeds will germinate fast as warm as it is and hopefully it will cool down soon and be perfect lettuce weather. I think I'll plant spinash and radishes, maybe broccoli and kale. My I'm getting ambitious just writing about it. Beats the hell out of what I have been preoccupied with lately.

Back in the days of the neat and tidy garden

I was looking through old photographs from 1999 which I have on CD's before the days of my digital camera. I got the prints with a CD and it occurred to me it might be fun to put some of the old photographs on my new computer. I love my secret garden and the privacy that comes with it but I'd forgotten how productive my old farming garden was. A totally different style garden than what I have now. I still grow vegetables but nothing like the quantity I did at one point. I can almost taste those cateloupes. Amazing to have more canteloupes than my daughter and I could eat. Particularly considering that we can both eat a lot. The other one I recall with wonder are the corn rows when they were filled with silver queen. This is the first year I didn't have a corn crop but it's been awhile since the rows were all planted with it. I had flowers too but the fresh produce was pretty over the top for a small family. Of course I gave a lot away which was part of the fun of it and I froze a lot. I need to plant lettuce this fall at the very least. I had a pretty good lettuce crop this spring until it got so hot and fried everything. I'm adjusting to my new meds okay. Definitely better this afternoon. I was so zoned out earlier I didn't know how I'd function but I have shown some improvement as the day has gone on. That's all I want at this point, improvement. Looking at the photograph that shows the hummingbird feeder reminds me of the days when I had to fight the bees to change it. No more. I have a ton of hummingbirds but they seem perfectly happy with the lantana, puple coneflower, and other plants. Much easier to grow flowers for them than to change the feeder.
Pretty much like that with all the birds. I used to spend almost as much money on bird food as people food and not just in the winter. I still have about the same number of birds but they make do with what I grow. I stopped feeding the birds with store bought food because of the neighborhood cats. If you feed the animals, you feed the animals. I know the cats need to eat too but I don't have to make the birds such easy targets. However, it doesn't seem to make much difference whether I put out store bought bird food or not. As long as the birds come, the cats come. At least the cats stay home when the weather is bad which is the one time I do help the birds along. I have even walked home from the grocery store with a 20 pound bag of bird seed in the sleet and snow. Do I sound like an old codger or what. At least I'm a well meaning old codger.

the morning after

The morning after my scan report appointment with new plans in place also brought a call to let me know I'm down for an oncology appointment next Thursday morning. My doc does Thursday clinic for all his regular patient appointments. I've occasionaly been worked in earlier in the week, where he comes to clinic after surgery, meetings, and such. I'm fine waiting for the appointment since the new meds are doing a great job with the pain. I'm a little more sedated than I like but there is always a trade off.

My cleome field above isn't as good of a photograph as some I have but I like the fuzzy look. I'd prefer that I not feel so fuzzy. I don't know how people do the strong treatments which knock them through and around and under loops. I'm a wimp about that stuff which had a lot to do with why I didn't do interferon. My doctor was neutral about it which was part of why I made the decision that I did. However, my strong reservations about how I'd handle INF was the deciding factor. The odd part is that I feel, to an extent, that my body has put on it's own immunotherapy show. Beginning 14 months ago, I started having symptoms similar to those with strong side effects to INF or to chemo. The first question that all the doctors I saw asked, when my symptoms began was whether I was doing chemo or had radiation treatment. It was so weird.

Oh well it is what it is and at least the only things which showed up on my recent scans are remote in terms of a recurrence. The more I think about it language like, cannot rule out melanoma is pretty promising. I've had language like consistent with tumor recurrence in the same area a year ago and it got better and better on subsequent scans. Maybe what I need is a little faith. Maybe I'm overthinking everything. Maybe I should go to the art museum for an indoor slow stroll. Maybe, maybe, maybe . . .

Wednesday, August 23, 2006

Center pieces that take over the world

I have a high tolerance for plants that take over the world, or their little part of the world, as long as they are interesting. The variegated ivy in the first photo cracks me up because it was from a center piece my parents had for a party. There was a little ivy in with the flowers in the arrangement which was on my parent's dining room table. My two types of variegated ivy which now cover an entire bank on one side of my house are from that center piece. The large leaf form has grown through the gate to my back garden, up and over the deck and hangs on one corner of my deck wall. The other is growing around the corner and up the front of my house as well as the side of my house. All from a couple of sprigs to set off a flower arrangement. Makes me laugh.

I got in touch with my melanoma clinic's NP and I will see my oncologist next week after they get the slides from the MRI's that were done through my PCP. I'm not sure what will happen but I am going to try to listen to what they say. I am also guardedly optimistic, in terms of my overall health, that some of the new clinics I'm going to go to may help. In addition to the pain clinic referral, I have an rx from the PCP for an outpatient rehabilitation clinic and she checked - evaluate and treat under: physical therapy; back on track - back education program; balance and vestibular disorders; lymphedema. Lots of evaluating and treating to be done in a new environment. I like the physical therapist I was going to but she wasn't in a hospital rehab setup and my insurance didn't cover much so I couldn't keep it up forever. This will be covered by my insurance and will be more comprehensive.

I have to watch my knee jerk reaction to my weight being mentioned. My new PCP said that one of the things the rehab clinic will probably want to help me with is the fact that I've gained quite a bit of weight over the past year. My knee jerk response is that I gained the weight because the pain kept me from running or even walking fast most of the time. It's the chicken and the egg deal. That said, the fact that I have gained a lot of weight isn't helping matters at the moment. What I would like to do is lose the weight prior to going to these clinics because I think it's a total red herring but at this point I can barely walk around the block, and I don't see the weight coming off any time soon. I think while I wait for the oncology appointment next week and then for the lipoma to be excised and possibly for the groin biopsy, I should go ahead and at least make appointments for the new clincs. They probably can't schedule me in immediately anyway.

The PCP's office is handling the pain clinic referral and they will call me with that appointment. All I have to do for the rest is call and set up the evaluations. Since I have adequate pain meds for the moment, with the latest increase, I could probably handle going to these clinics now if they got me in right away. At least it would be a positive step forward. If I show up at the evaluations in bad shape, hey that's what I'm going for, to get better. It's so typical of me. I always want to make a lot of progress on my own before involving anyone else. I wouldn't ever go to aerobic classics back when I did some of that until I was already in pretty good shape. I started working with a trainer after I was already jogging 5 miles most mornings as well as swimming a few days a week. The trainer was to help me with weights to build upper body strength, primarily. That was right before my melanoma dx and the rest as they say is history, at least in my little universe.

Overall good appointment

Saw my PCP. The bottom line is that although there is some uncertainty, overall it looks better than I expected. The lump on my back is most likely a lipoma and it will need to be taken off by a general surgeon and biopsied to be sure it's benign but the assumption is that it is. The pelvic area is murky. Can't rule out melanoma but that's a regional recurrence at worse. I also have edema in that area. I have arthritis in my lumbar spine but I already found that out in April. The PCP couldn't reach my oncologist but that's the next step. I'm also getting into a pain clinic, lymphedema clinic and will work with a hopsital physical therapist. The PCP is great. She's so nice and on top of things. She can refer me to a general surgeon for the presumed lipoma but she agreed it made sense to see if my oncologist will excise that as well as get some tissue from the dubious inguinal area. I'm okay. I was a little pissy in terms of wishing that my ONC would have called the PCP back. She was surprised the NP hadn't called me because she thought it was left that she would do that but I'm sure they are busy. I'm trying to take the high road. I am too aware that many people have it much worse than me and these doctors have to prioritize.

Tuesday, August 22, 2006

Twenty more hours to go but progress

Very frustrating to be told that I would find about about the MRI results on Monday and then not hear but shit happens, as someone eloquently put it. Not me. I'm rarely that eloquent. Zoom forward to today. This time I called the PCP and left a message that not only was I waiting to hear about the MRI but that I had pain issues. I love that word, issues. Has such an all encompassing reach. An issue can be a finger nail that's broken. Since I generally get my manicures with my teeth that is a minor issue. The short story is they don't have the MRI report, the doctor isn't in the office today, the nurse set me up to see her tomorrow at 9:00 am by which time they will have the MRI results. Sooooo twenty more hours to go. I have enough meds to deal short terms so hopefully it will get sorted out.

The morning after . . .

I woke up this morning much calmer about the whole scanning issue. Scan results aren't half as important as pain management at the moment and I'm not going to go to the hospital to pick up the report, even if I don't hear from my doctor today, as I had planned. I can always get the report later, that's not the big thing. I'm going to call and leave a message again if I don't hear by mid morning and explain that I need to discuss the pain issues as well as the scan and could a nurse call me back, if the doctor can't. The good part about literally having a weight on my back is that it is something that can not only be felt but seen and I know that's what's bumping up the pain so it seems like a no brainer to take the damn thing off my back. I'm a little slow these days or that would have occured to me sooner. It doesn't really matter what the scan shows in an immediate sense, in an immediate sense it matters that I find someone to remove the weight from my back. I hope that it will be that simple. Since it's just under the skin, as long as whoever does it is careful about my spine it shouldn't be a big deal.

My daughter made it safely back to school and only had her deoderant confiscated from her carry on bag. I worry a little with her flying these days that she'll encounter difficulties but she didn't. Her Dad offered to drive her but she wanted to fly. She had a car until last year but after it was on its last legs, in part, from all of her road trips to concerts; she decided she doesn't every want the hassle of a car again and that she'll only live in cities with good public transportation. I hope it works for her.

Monday, August 21, 2006

No news is no news and I'm feeling witchy

NO NEWS and I'm feeling very witchy. Saw my daughter off at the airport and she's fine. She doesn't borrow trouble. As my mother would say, you pay a high rate of interest on borrowed trouble. My daughter is better about remembering that than I am. This picture is from halloween of 1990. I made my daughter the dorothy costume. Unfortunately I also cut her bangs. Her Dad asked me to please never try that again. When she was little she would decide on both of our halloween costumes. The year before the one pictured here, I was Cinderella and she was my fairy godmother. If I do say so myself we were cute as bugs in rugs. This picture shows me looking how I'm currently feeling.

I am disappointed not to have heard anything as the PCP gave me the impression she'd call me fairly early Monday morning but it may not be her fault. Even if it is, I understand doctors have to prioritize in terms of the unexpected. My anxiety may pale in comparison to any number of emergency situations. Also, since I didn't leave the MRI room until after 5:00 pm on Friday, the radiologist may not have the report done. What concerns me the most is my new PCP wanted to try to talk to my ONC today since he was in surgery Friday and I do not want them playing telephone tag to effect how soon I find out if anything showed up on the MRI. Patience is not one of my virtues. Until today I thought I was better and learning patience but I'm not handling the wait as well as I have with other scans. Worse comes to worse, I'll go to medical records at the hospital tomorrow and ask for a copy of the reports. I don't want to have to do that but I will.

Not a good picture but the one of my daughter on the train in 2001 when we were going from Ulm, Germany on our way to Paris for the weekend is a favorite of mine. It captures something that makes me smile. JF was doing a student exchange between a high school in Ulm and hers in Raleigh and I rather spontaneously decided to fly over for a long weekend and take her to Paris. It seemed like a great mother/daughter outing. I hadn't been to Europe since 1974 when I went with my family for the summer when my Dad was studying in Canterbury. My daughter was studying French and German and the exchange didn't include any travel to France so I decided I should pop over and take her to France. My original idea was the French countryside in search of a chocalatier since we both loved the movie Chocalate. My daughter wanted to go to Paris. I enjoyed Paris when I went with my family in the 1970s so I said sure why not, we can find a chocalatier in Paris. We had a blast. Although this isn't a great picture it makes me think of that trip and I can hear my daughter saying, mom let me do the talking, I know you studied French a long time ago but if you try to speak French everyone will switch to english.

Me and my daughter

My daughter is playing piano for one last time during this summer vacation. Nice hearing her playing pieces from Les Miserables in the background. Takes the edge off waiting for MRI results. She is off to school soon for her last semester of college and we took a few photos this morning. Although slightly blurry, for some reason this one is my favorite.

The painting of the girl over the lamp is one my father did from a old black and white photograph of my mother as a child and I always loved it. They didn't know each other as children but that's remained my favorite portrait of her. He captured something in it that is more like her than any other photo or painting. Glad I ended up with it in my house. Well Not too much to say as I'm in the throes of anxiously waiting for the doc to call. I hate that. Guess I'll start thinking about something J and I can have for lunch soon.

I woke up furious

I woke up this morning madder than a wet hen. Mad at the system not any individuals. Mad because other than the pain management end, I can't see how it could have been that different. The pain management end of my care could have been much better. I'll start there. About four months after my dx, with surgeries in between, I had unbearable pain and neurological symptoms hit. Still not sure why. Maybe an autoimmune response combined with being in that percent of people that have delayed ongoing pain after an LND. The short story is different docs wrote short terms scripts to last until I was passed to the next doc, until finally landing with a pain management specialist.

The pain doc was having a bad day at our first appointment which clouded everything for me. I know it was just a bad day because of something I heard totally coincidentally from someone not attached to his office. The point being I know he's normaly quite nice both from others and from what I later saw for myself first hand but he was anything but nice the first time I saw him. He was rude. While he flipped angrily through my chart, his NP and I chatted and he said, be quiet, I'm trying to read. We were both in semi shock. He then told me I had fibromyalgia after barely examining me and said that I also had buildup of adhesions from the groin dissection, duh. He went into his hydrocodone lecture and said if I would sign a paper saying I wouldn't get meds from anyone else he'd write refills for that and try to keep increasing my gabapentin. He said at some point he might try an ilioinguinal nerve block. I said that as a cancer patient with my oncolgoist currently following a possible recurrence, I might need medications from other doctors. He said, of course in that case you will, you know that's not what I meant. I said, no, when I am asked to sign something, I assume that it is binding morally because I honor my word and signature. He brushed me off.

Before I saw him, every doctor had seemed to appreciate, and had read my summations of what was going on. They are skimmable and cut to the chase. For him I did a spreadsheet of meds so he could see how long a gabapentin increase helped and at what point I had to start adding in more over the counter meds with the hydrocodone and gabapentin. He refused to look at the spreadsheet and told me to stop doing that. He said it was obsessive. I was in so much pain by then that I let it go and left assuming I'd need another pain doc.

I found a pain clinic close by which I decided I'd try to get into and at my next neurology appointment, I told that doctor who is GREAT that I wanted to try to get into the Rex Pain Clinic. I explained the Dr. Pain and I weren't a good fit. I knew I could go to the pain clinic where my oncologist is, if I was willing to wait 3 months to get in, but it would involve an hour each way, including parking and walking in. I didn't think that was a good idea. Therefore, I went through my neurologist to try and get in at the local hospital's clinic. Before I found out they wouldn't take me on, Dr. Pain called me on the phone and made nice. He said he felt like we got off on the wrong foot and he talked to me at length. Close to an hour. I mentioned being put off by the way he reacted to my chart of meds because basically I did what the ACS recommends. Being at my computer all day, since I work from home, I carried it one step further. I did an easy to read spreadsheet VS a daily log because I thought it would be easier for him. He accepted why I did that but he said he'd seen people again and again become obsessed with their pain. HELLO. When you're in constant increasing pain it's not like it isn't a big factor in your life, unless it's adequately controlled.

Zoom forward. I've been seeing Dr. Pain now since November of 2005. He's been okay and to be fair has increased pain meds when I've asked but I haven't trusted him enough to let him know I needed an increase recently. It's not just about trusting him. I've been afraid that new warning signs would be lost in a sea of symptoms. I was the one who most didn't want to be overmedicated unless someone was looking into the causes.

My neurologist has continued to look at possible causes but he leaves the oncology issues to other doctors. The other doctors have done routine follow up but I feel like I've been stuck in a box of someone with chronic pain. No one except my neurologist is looking for answers, or weren't until my most recent problems. The deal is that I don't fit fibromyalgia, as convenient of a label as it may be. My condition has been changing. I should at least rule things out today, if I don't rule anything in. The reason I woke up furious on the morning that I'm to get the MRI results is that the past year may have been my best year after dx. It may never be any better and the pain may never be as controllable as it could have been this year with adequate care. Then again, I may be back where I started with no clear dx. The good thing is I have a PCP now that I like and already trust. The bad thing is I may either get devastating news or find out that there is nothing they can put there finger on as to why my condition is rapidly deteriorating at this point. To be continued after I get the phone call from my doc which I was told I would get today.

Sunday, August 20, 2006

Ah time, time, time where does it go

So cliche to talk about time a fleeing but it surely does. My daughter is finishing up some last minute packing for school. She is going back early because she's working part time at the front desk at one of the dorms. Not a bad job, usually she can sit and read while she works.
I'm a little anxious about tomorrow. I so hope that I don't need to go for any appointments that interfere with taking my daughter to the airport. Of course more than that I don't want bad or uncertain news. I do want to hear something about Friday's MRI's early. Otherwise I will be even more anxious.

I hope I feel like a walk in the morning. I spend too much time inside and it would be nice to go for a walk. I doubt JF will be up early enough to go with me but it could happen. Particularly if I walk loudly past her bedroom. Just kidding, sort of. Here I am at command central where this picture was taken today. I spend way too much time at my computer. I hope I can get moving soon. I feel like it will take a wheel barrow to cart me around if I keep going at this rate. It's not about the weight. I see people running all the time who are bigger than I am although my frame wasn't made to carry this much weight. It's about the fact that I am so much less active and feel like I'm weighted down. Yep this is a complaining moment and it too shall pass.

My daughter and I played some funny games for old times sake today. Scattegories and passport. Passport is a game where you fly around the world and answer questions on different continents. Pretty funny because both games were easy even when my daughter was in elementary school. Now that she's at her last semester of college it's just plain silly. About my speed though. My mental focus gets worse and worse. I hear my name being called so I guess I'll end here. Don't think I was going anywhere good with it anyway.

Garden dreams

I am dreaming of the energy to plant a winter garden. I am discouraged and waiting on a series of scans I had Friday but I did buy some wild flowers on an impulse. I'd like to plant some in case we have a long fall and I don't get the winter I'm actually longing for. We had much too mild of a winter to count last year. Odd too as our winters got longer and longer for a while there. I could also plant some wild flowers in my garden boxes and hope for the energy to cover them and turn the heating element on and off at night. I could also use the hot water jug method. If I get my greenhouse door fixed, I could try to do a big winter planting in there, as I was doing until last winter when my energy took a dive.

I am also looking forward to fall when my front garden is a blaze of color and the leaves are everywhere. I lOVE leaves. I love them in the trees and on the ground and raked into big piles to fall back into. I love leaves for mulch and added to the compost to break down with the green matter and form that nice black stuff. I can shake the compost through my sifter and scatter on my plants in the spring, and add to the boxes and greenhouse pots year round, largely due to all my leaves.

My daughter goes back to her university tomorrow. I hope I don't get a phone call Monday before I take her to the airport with bad news. I am prepared for the fact that I may get a phone call that sets my adrenalin into overdrive. However, without a biopsy, I know enough to ratched it down a notch. I know I have some kind of soft tissue mass on my spine because I can feel it and I know the pelvis had a possible recurrence before that turned out to be dismissed because it got smaller on a repeat scan. I know better than to let my adrenalin go off half cocked but that doesn't mean that it won't do that anyway.