Thankful

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.

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.

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.