Wednesday, August 14, 2013

CAT SCAN and other joyful news

Hi Ya'll

I didn't even go back to see when I wrote again and what I said.....I'm winging it and just
writing what I feel like now.

I got out of the hospital and came home to a very grateful Maine Coon Cat who missed me very
much, and me him as well. I was so happy to be back in my tree house once more. It felt so much
better than the hospital where one gets assaulted to every sense. Smells, Textures and greasy door knobs and needles poking and prodding and the food is horrible and doesn't change, the noises are unbearable. All the beeping of machines, including mine. I had a pump machine to put in all the liquid meds into my pick line and when they got low, the machine beeped very loudly. Sometimes at 3 in the morning. The nurses were up partying at 2 in the morning one night. I asked for a xanex to get some sleep and I got major attitude. I couldn't take a shower except there was a shower cap that you put on and you scrub your head while the cap is on. It has some kind of shampoo and conditioner mixture that you scrub into your head and then towel off afterwards. Not good.

So, being home was incredibly important for so many reasons.

The pain was not controlled so I am now doing radiation treatments again.....oh boy! This time the doses are higher than when I had them in 2007, but there is one big difference. I have 10 sessions where in 2007 I had 33 sessions. I am half way there. Today was my 5th. I have been experiencing stomach issues, big time. I'm told it has nothing to do with radiation. Despite the fact that it started 3 days after I started RADS. I am sure being assaulted with radiation has some effect on other parts of my body. You can't convince a Radiologist that. I tried to in 2007 as well. I had some side effect happening and the doctor would not accept that it could be related to the treatments. I was so furious. I know my body and know what is affecting it.

Anyway......The up side about doing the RAD treatments is that hopefully the pain will be gone and the other pain will be manageable. Also what I didn't know right off and the main Radiologist who has my case failed to tell me is that the two tumors they are "attacking" are very close to my spinal nerve in my spinal cord. If the tumors grew any more, they could push against that nerve and cause paralysis to the rest of my body. I found this out from another doctor where I am getting the treatments at. I say treatments, even though I am not being treated with radiation, this is not curing my disease. It is only making it more comfortable for me to continue dying. Also that little fact about the spinal nerve.

I had to get off of Hospice for the 1 1/2 weeks due to Hospice not willing to pay for it, its cost is $10,000.00. Yikes! So, I'm hoping Medicare will pay for it and the part they don't pay for I qualify for Free Care. So, I'm all set. Or so they say. I also almost had my hospital bed taken away from tape......the company is taking my cane, my tray table which has been VERY helpful and my oxygen tanks and equipment. Good thing I don't need the oxygen right now and I have another cane due to a friend buying me one. Then after the 1 1/2 weeks is over, I can have it all back. Luckily my Oncologist wrote a Rx for the bed. I don't know what I'd do, I'd lay on the futon bed but it would be very uncomfortable for me and people couldn't stay over night with me unless they slept on the floor. But it's not an issue thankfully.

I am very grateful for so many things and yet there is still so much to gripe about. I do try to look on the bright side of life.....hey isn't that a song? lol

Sometimes its just a sucky situation.

The RADS is making me tired for sure. I still have 5 more to go, luckily I have Saturday and Sunday off, so maybe my body can rest up a bit before the last 3 txs. I am told that I could have a sore throat for a week or more after I stop tx. I also may have trouble swallowing. Radiation is the gift that keeps on giving.

I AM lucky they saw the tumors pressing on the spinal cord etc... if I hadn't had the pain and hadn't had the CAT Scan, then I could be going about my business and wake up one day unable to move. Not ok. It could still happen. Hopefully not.

When I met with my Oncologist yesterday, with my mom and Soc Worker from Hospice, I tried to keep it together but I ended up crying quite a bit. I asked him a bunch of questions and he showed us the CAT Scan on the computer. Pretty freaky.

Then I asked him how bad off do I need to be until he can sign off on Paliative Sedation. He said that it's up to me, but I know I have to be pretty bad off. I started crying due to the fact that I feel like I'm almost there. It has been a long long year and my family and friends, some of them, possibly could be experiencing Compassion Fatigue. It is a long time to put out love and caring for someone and to prepare yourself for someone to die and they don't.

I can't get away from it and go camping or go traveling or just not communicate with ......well, me.....I live with this every single day. It is getting emotionally very very hard for me to keep looking at the positive parts of this journey. I am still doing it, but it's getting harder. My mom says I'm so brave. I don't feel like that. I also don't want to have to live up to that. I don't want people to expect me to be brave all the time. I want to be able to fall apart too. To be allowed to have crappy crappy horrible disgusting days sometimes. After all this is not a fun time to be had by all. I am dying of a horrible disease, so aren't I allowed to have some bad days?

I really just want to be loved and cared for and not looked at with pity or with fatigue that says to me....."you've lived too long"

That is incredibly hard to hear or to imagine people are thinking. That my loved ones want me to just go. Maybe it's partly due to them not wanting me to suffer, or that they are scared. I am just very vulnerable right now, so that means I'm super sensitive to others' emotions. I"m thinking that I'm turning another corner of where I am getting worse and will soon be sedated more than I am now. It's about Dignity and Grace for me at this time on this journey. I don't want to be angry and mean to people as I've heard people get as they get closer to the end. Even if it IS part of the process. Not for me. I want people to remember me as a person who can show love and be loved and respects people no matter what their story is.

I am rambling

I just wanted to show you a small window of what goes on in my mind lately. The fears and issues I"m dealing with. I also have experienced Love and Singing. My friends came over to give me a private Kirtan session recently and that was so healing and wonderful! I also have had reiki from a friend not too long ago and tomorrow my Polarity Goddess is coming over to my house to give me Polarity. I can't wait! I hope she can balance me out a bit. Open up the closed up areas of my body and spirit. My body is being attacked by this radiation that is helping but also is hurting other parts of me. So those parts need some help.

I am very grateful for the community I have around me. It is a bit smaller now than it was in the beginning. Some people have faded into the back ground and some are very busy before Fall gets here. Either traveling or busy with their kids. I still have an amazing core crew of beautiful souls who help me in so many ways.

So, I'll end this post with a thank you for reading and for witnessing my journey.

Blessed Be!


S. R. Roy said...

Still with you in spirit, Jenn.


Anonymous said...

Me, too, Jenn. Love you. Ellis