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.

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.