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 . . .

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.

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.