Monday, May 13, 2013

for Hugh

Leave a message for Karen, TC HERE.

Thursday, May 2, 2013

Radiation - this time complete with side effects!

I finished my 2 weeks of radiation to the rodded and fractured and becancered femur, and to the lumbar vertebra that had the doctor worried. Stop those pesky cancer cells from growing. Stomp out those hot spots.

This is the fourth time I've had radiation. First go-round in 2006 to the breast, of course, which even with the 2nd degree skin burns I worked right through, doing radiation on my lunch breaks. At least I could walk.

2009, right after stage IV diagnosis, late summer, to the right illiac wing thing. Helped the pain IMMENSELY, and I had almost nothing in the way of side-effects. A bit of fatigue. But I was actually walking better by the end of the treatment.

2012, Spring, after repair of compression fracture in the lumbar region, radiated that area and the LEFT illiac wing area. Again, no side-effects, but welcomed pain relief. Walking with walker, though looking back I am amazed that I was walking so far in and out of the facility that way.

2013, Spring again. What a waste of good weather. I've shared my horrific hospital story with the rod being put in the femur, and the long stay (2 weeks, felt LONG to me) in rehab. Walking a little with the walker by the time I left, but I think the attempt to work the leg put more pressure than I should have on the ribs and back. Did one round of Xeloda, since I had been on a break for surgery and rehab, and then a two-week radiation treatment. I wasn't walking very far (down the hall) and so I didn't attempt it for this every day trip. Wheel chair, all the way. I felt bad that my mother, who is almost 70, had to load and unload the thing, and still does, for all my appointments.

Going into this round of radiation, I didn't really have much pain in my back. My pain focus was on my leg.

Let me side-bar here and mention that I had the same wonderful techs for radiation that I'd had for the other two back/hip treatments, especially my most favorite person in the whole medical world, Sam. Kindest, made me feel securest, always patient, always made me laugh or smile. Thank goodness I had Sam.

This time, I think I've had side effects. While my back wasn't really hurting that much, after the treatment, maybe toward the end, it started getting worse and WORSE! Ribs, flank, sides, spine. Oh my gosh, there were days when I felt like every single rib was broken, surely; that's how badly it hurt. Ribs front and back. Sides, everywhere. Oh so much pain.

Surely not from the radiation, says the radiation doctor.

Sounds like inflammation and possible pleural effusion, says everyone else! I was to the point, last weekend, where I was going to go to the ER to have that evaluated. I was in so much pain, I was willing to face the ER and possible needles and junk. THAT's how bad the pain was. I actually put it on my schedule for this past Monday. See family doctor. Go to ER. But Sunday I was feeling a little better and Monday morning, still out of the extreme pain that would drive me into an ER visit. Pain started spiking again midweek. Finally I put 2 and 2 together and correlated the pain with the wearing off of the pain patch (pain meds transdermal patch). Now that I've correlated, if I wait the full 72 hrs for patch use, I am ready for the ER. If I change it 8 - 12 hrs ealier, I can stand it, but definitely feel a dip. The family doctor suggests I talk to the prescriber (oncologist) about changing on a 48 hr rotation, not 72. I think that would be best. Upping the dose I don't want to do again, and I think it would still wear off too soon. If I go the full 72 hrs, it take a day and a half for it to rescue me, and that leaves me about a day before the pain returns. If she will prescribe for 48 hrs, then I think I can handle this pain at a more manageable level. Is it managed? Well, no. I'm still taking add'l oral Rx meds with it, but not every 4 hrs. Ibuprofen seems to help enough. So is it managed? Sort of. I could live (for a short while) with the level at 48 hrs. I am hoping that these obviously caused by radiation symptoms clear out by a month's time. I'm not walking, not even down the hall. Barely getting from bed to toilet with the walker. Front door to car with walker. Wheel chair to recliner with help. Is it an acceptable quality of life? No, but I can take it for a little while longer if I think there is a light not far off.

Tomorrow I am having a full body bone scan, ordered by the radiology oncologist, mostly to calm me down about having broken bones that no one knows about. I think it's a good place from which to move forward, knowing there are no breaks for fractures. If there aren't, and the pain doesn't start to subside, then evaluation for pleural effusion will still be in order, but we've at least narrowed it down, ruled something out.

I hope I don't have any new compression fractures. I hope I don't have anything that will require me to reenter the hospital. I need at least a year between visits to emotionally be able to face that. I hope I don't have anything next spring that returns me to the hospital, or radiation, or pain.

That's the hard of the hard things...Stuff keeps happening. Recovery times get longer. That's where I am at now. It's the next level of this cursed frickin' disease. It's been hard to wrap my head around. It's been hard to accept that while there may be little "betters", for the most part it's downhill from here. I will have to rely more and more on others. I cried about this to my mother, about facing this alone, about being alone in this. She assured me that I was not alone. But I am worried that a new crisis at the attention-sucking sister's house will pull her away.

I've felt always 2nd to Attention-Sucking Sister. 2007. I was barely finishing up radiation and getting my port taken out. I'm sorry that Attention-Sucking Sister anacronyms down to A.S.S. I didn't plan that. Anyway, she is diagnosed with Stage 0 DCIS and rushes into a bilateral mastectomy. My support is immediately gone.  I wasn't even finished with treatment, and BAM, I am nothing. I am on my own.

2009. Maybe 2010 by now. I'm still reeling from this Stage IV diagnosis and she has major crisis involving one of her children being delinquent. BAM, I am nothing. I am on my own. Her depression takes all the support and attention.

2013. I've been through the wringer this year. I'm not walking or driving yet. I am still completely dependent on my my mother for transportation to doctors, for grocery trips, for prescription pick ups. A.S. sister's delinquent son falls into more trouble. Last night. Mom is out there today. And by out there, I mean this sister moved to another county a couple years ago. I have a few more appointments already on my mom's calendar, including that early-morning bone scan tomorrow. I sit here on the edge of my seat, hoping that I am not completely cut out again. I can already tell that I will not be seeing much at all of my little sister and here kids when they come to visit from out of state later this month. She will spend almost all of her time Out There. Never mind that I could be dead before she is down to visit again next year. I am completely feeling on the verge of being dropped with no support.

I could go on and on about this. I feel like almost no one understands what I am saying when I mention how much help and attention A.S. Sister gets for a cold or a hang-nail, let alone the big stuff. And I'm not saying that she shouldn't get support and help from family in a crisis. But I AM saying that I STILL NEED some. Her newest crisis does not instantly clear up whatever I am facing.

I expressed these things to my mother a week or so ago, before this latest crisis of my sister's. I hope she remembers what we talked about. I hope she is aware of how it may affect how she supports me. I hope having said something a week ago means I don't have to stomp my feet like a child and cry "no fair" to get attention this time. Because I'm not just being a baby; (it is a real phenom, I'm not being a baby about that either) I really DO still need help and support. Not just emotional support, which I am pretty much getting used to being shafted for this sister, but I canNOT take care of myself yet. I canNOT drive myself to appointments yet. I canNOT drive my son to get groceries or pick up prescriptions yet. I am holding my breath to see how the rest of the next week plays out, with appointments and help. Oh, and then there is the handi-craft project my mom and I are working on TOGETHER for Christmas gifts. I'm sure her time over here working on that with me will fade, but at least we've got until Christmas to finish. I recently made an appointment to begin seeing a new psychologist, whom I met in rehab, and it's not on my mom's calendar yet. I really need this. Will I have to find a non-family ride to counseling? Will I have to use dial-a-ride? Will I have to forego it?

I hate that I sound like I am whining and being selfish. I hate that I probably sound selfish to anyone reading for worrying about how this will affect ME when I haven't even given it a chance yet. It would be selfish. It would be petty. HAD THERE NOT been so many precedents already set!

Please, someone out there, get me.

Now, maybe I can sandwich this in between talking about radiation and continue in my belief that no one in my family reads my blog, and that I can therefore speak my mind.

Back on Xeloda. Trying to outlive these radiation side-effects. Bone scan tomorrow. Review of results with Rad Onc on Monday. Oncologist that Friday, with review of meds. Follow-up with ortho surgeon the following Monday. And hopefully new psychologist the Monday after that. Doctors want me to start more physical therapy after radiation. I've worried that this is a lot more appointments to ask of my mom to drive. I probably won't even ask now. We'll see.

My other sister brought me a new (to me) recliner last weekend, to replace the one with the broken handle. She surprises me with things like that. I can't recline without help yet, but it is wonderful. WONDERFUL. Best thing going right now. My bed has been a constant battle since getting home of too high to get into or to low to get out of (isn't that a Michael Jackson song?).  I'm doing pretty well with it, as long as the pain is in check. On the week when I was planning the ER, there was so much pain that I lost my breath and was gasping for air and scared the hell out of my son when he was helping me to bed one night. Is that sort of thing in my future? What will my end-game be like? Who will be there? How drawn-out will it be? These are the next-phase questions. These are questions that resist denial now.

I wish I had the energy and mental wherewithal to write blog posts that read like articles or essays. I barely have it in my to keep up with documenting the happenings. But funny still creeps out when I accidentally almost type MJ lyrics, and I do have the wherewithal to see the humor in that sort of thing. Thank goodness.