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Tuesday, June 9, 2015

A look at 2014/2015 from my perspective

I should actually start with last summer... Steven was going through different doctors around that time. Steve was running him to and from appointments, whether they were for acupuncture, physical therapy and even throwing in a doctor's appointment or two. I had a MRI to which the doctor (who had done my neck and lumbar disc surgeries) said that my back pain wasn't a surgical issue from his standpoint. I was thinking, "well, what am I supposed to do with my pain?" I put off dealing with the pain issue for a few months.

My father was diagnosed in August  2014 with myelodysplastic syndrome, a kind of cancer that affects the bone. He held off deciding whether or not to get an infusaport for chemo for a month or so. Mom had had issues with her infusaport during her chemo days back in '96, and she ended up with a clot in her subclavian (if I can remember correctly). Dad was afraid of having issues like the clot Mom had, and didn't want to get a port no matter how many times that I tried to convince him that it probably wouldn't happen to him. One of my aunts on my Mom's side was able to talk with him and finally convince him to get one. He spent time getting a port put in sometime in October.

From here on a lot of the events that happened blur, since I was working 32 hours a week, and trying to help with things going on in our household and Dad, too. Steven had a few falls around the house, yes, the boy. One of them happened in the garage while I was at work, but before he was supposed to get on the bus. Dad had chemo, and ended up in the hospital with counts very low. I want to say that his WBC's were less than 0.5 -0.7, and he was on neutropenic precautions . That means no fresh flowers, no produce, no sick people near him. He ended up leaving there to go to a hospice unit, and then to our home for a few weeks. Steve, Steven, and I helped to pack his apartment up, in between work and school and Steven's appointment in Gainesville. Hospice came to visit him at our house while he was there. I took Dad to a few doctor appointment and spent Black Friday with him as he received 2 units of blood. My sister  Laura and her family came over from Orlando along with Dad's older sister and her husband to finish packing up his apartment. Karen and her husband Bruce came down in early December to fly Dad up north to their home, and Bruce drove the moving van from FL to up north.

Dad ended up in the hospital, I think one more time, between a few outpatient blood transfusions and one more inpatient stay. He decided no more treatment in mid-January. From there till the day he died in February, Karen and Bruce took care of him.

During that time down here, we were trying to straighten out things in our house and tried to get things back to pre-Dad being here. We were dealing with issues with Steven's back pain keeping him out of school for almost 2 weeks between early January and late February. I spent a lot of time on the phone with doctors, trying to get Steven  hospital/home bound schooling in our county. He was at the point where he couldn't tolerate sitting in class for even an hour. We finally got him on the schooling through the county in early March. His pain kept him from concentrating much on even the homework much less tests, and he got behind. (As of early June, I'm not sure what his school status is for next year, sophomore again, or heading for a junior.)

We had issues with trying to get a pain management procedure done during Spring Break. He ended up with having a wisdom tooth or two removed instead! I finally was able to focus somewhat on getting my back pain and fibromyalgia taken care of. My rheumatologist decided to refer me to another pain management doctor#2 whom she felt could better handle meeting my needs for the fibro pain, maybe the other doctor could do something different with my meds. I went back to my pain management doctor#1 for my lumbar pain issues, and we had a discussion. He opted to refer me to another neurosurgeon who could look at my MRI from last summer to see what else could be done, like surgery or if not maybe a spinal cord stimulator.
The neurosurgeon recommended a spinal cord stimulator trial. 1/3 of the patients who have the surgery to get the SCS put in according to him say that it worked wonders on them, 1/3 say "meh" that it helped some, and then 1/3 want it removed after they've had it put in. Encouraging or discouraging, I don't know! All that I know is that with the back pain, my quality of life is nowhere that I want it to be. I have a consult with a therapist next month, and the therapist will send results and notes to pain management MD #1. From there, the SCS trial will happen. It's just this waiting for things to happen that gets to me.

Steven's at church camp this week, and he wanted to go regardless of how his back pain was. He's scheduled to see pain management doc #1 next Monday, I'm hoping that he gets some form of relief. We have him also going through Nemours this summer for another doctor.

Oops, I forgot to throw in that we had to put down our 21 year old yellow collar mini-macaw last month. It was the hardest thing that I've had to do in a long time. We had her euthanized and cremated, and her ashes were scattered in Central FL somewhere.  We were blessed earlier this year to receive Poppet from our dear friends Alesha and Doug and Ike. Poppet's an Timneh African Grey, and she's brought joy into our house.

You probably have also noticed or will notice in the next couple of weeks several posts a week. I got majorly behind on posts and projects during the time that Dad was sick/we were dealing with Steven's back pain. I am still trying to get caught up. I will be running a very late giveaway within the next 2 weeks re: "The Good Lie".  For those who have stood by me and continue to do so, thank you! For my new readers, bear with me, I am getting caught up! Thank you!



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