Friday, August 16, 2013

Fire and the elements

Hi Everyone

Thank you so much to all of you that comment, it truly makes my heart swell. :)

I saw my Polarity Therapist yesterday. She came to my house since I wasn't able to go to hers.

It was such a gift! She always makes me feel better, not just physically, but spiritually and emotionally.

Now some people out there may not agree with going to anyone else other than doctors who practice Western Medicine and that's totally ok, your choice.

I believe in trying both when needed. I also believe our country doesn't support preventative medicine like I wish it would. Mostly the insurance companies. They are slowly coming around by paying for some massage therapy if they work out of a Physical Therapy office and I've heard some Acupuncture is covered sometimes. So its coming along.

I believe in Polarity Therapy and also Eastern Medicine. The pathways of our bodies are connected in an interesting way. I'm not a Polarity Therapist so I'm not going to teach anyone about it. I just wanted to share my experience.

So, since I am having Radiation beaming into my neck and head area, but is hopefully going to help the pain on my right lower ribcage area, I think is interesting. It has to do with the nerve pathways. Radiation Therapy is fire and heat and all things related to that. So what do you do when there is too much FIRE? You add WATER and sometimes AIR. So my Polarity Therapist worked on opening the pathways to allow more water and air thru my body. I'm not explaining it well, but that is the only way I can try to. I've noticed that I've been angry and irritable and impatient and emotional.....very weepy. At the RADS appt I saw the doctor about a new pain in the middle of my back which could be another compound fraction of my spine and I started to cry. There is nothing they can do for that.

So, I knew that I had too much fire due to radiation and that my stomach issues are related even though the Radiologist says otherwise. My Polarity Therapist says that anything that puts too much fire to the head area, can affect the digestive area and the thighs. So, I'm not crazy in thinking its related. It's just another way of looking at things. From a different point of view.

My horoscope today, via Yasmin Boland, said something about having my own point of view and to stand strong with it even when others don't agree. So, I do stand strong with it because I am feeling it. I can feel what my body is doing and how it relates to what is going on lately.

My mood already feels so much better. I still have 4 more Txs to go, so I have to visualize the ocean and air and ether balancing me out and hopefully that will get me thru the rest of the treatments.

I know the fatigue will last 1-2 weeks after its over, but I am already tired due to having cancer and my weight is down to 105. Not having a lot of weight on you makes it harder to do things and wears one out faster I'm discovering. Things that were so easy to do are now making me have to lay down for a while.

My Polarity Therapist also said to allow people to help me. I'm really trying to do that. Lots of my peeps are busy or are going away on vacations or work related trips. I am visualizing lots of people helping me do things around the house and getting items I need etc....

I think it's also wanting people around me, especially overnight. I feel safer knowing someone is here at night in case something happens.

So, thats all for today. Busy day for me, but I know I can get thru it.

I hope you all have a wonderful Friday and weekend!

Blessings to you all!


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 me......red 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 now.......lol

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!

Sunday, August 11, 2013

Back to RADS.....AGAIN!!!!

Yes, it's true. I'm having more radiation therapy. I had to be in the hospital for what I thought
was a pulled muscle that caused me so much pain it was excruciating. I was there for 3 1/2 days and left still dealing with the pain. I was told on one day that I had to go home with this uncontrolled pain and die in bed. I was sobbing uncontrollably. I was not ready to hear that. My mind could not wrap itself around that information. The Oncologist didn't ask if I wanted a family member with me or a nurse or anyone. She drops the bomb on me in not a nice way and leaves the room saying "sorry". I was devastated.

Then the next day she came back to say that maybe radiation would help shrink the tumors that they saw on the CAT Scan the night before. Or I could try a nerve blocker. I don't think I"m going in that direction. They want me to have 10 sessions of RADS. I have had two so far. The weekends there is no treatment. So on Saturday (yesterday) I had horrible digestive issues. Nothing was staying in my body. Not throwing up, thankfully, but coming out the other end. Not fun. I soooo wanted to have some ice cream with my friend who stayed over last night but it just wasnt worth the torture my body would go thru afterwards. I wanted my body to have a break for a while. I'm hoping the reaction to the RADS is over and my body will be acclimated from here on out. I can't afford to lose any more weight. I'm about at 108 or less at 5'7". I lost about 60 pounds since last Summer.

I have been thinking that I have just lived too long and also have been feeling that from some family members and non family members. It's too hard to give out compassion for a year or more I guess. I try to understand it and wish I could take the pain away from others, but I can't.

I am living with this every single day. I can't take a break from it and go camping and forget about it all. Nope. Every day.

This is what I wanted. To die with dignity and not with excruciating pain. So far it was happening until now. I'm feeling optimistic about the RADS working. I'm wondering if I need all 10 sessions.

I know that everyone grieves differently and expresses their fear differently. I'm trying to find acceptance for that. It's hard when I"m exhausted and in so much pain. So I figure if people want to come to me and share love and compassion with me then thats what I'm needing and requesting. Not judgment or telling me what they think I should or should not do. This is MY path, MY journey of dying. The most important journey of my life in this body. If people can't show and share love with me, then hopefully they can process their pain and fear with others.

I have enough to deal with on my own and can't fix anyone else or should I do that. NO.

Everyone hurts and expresses that hurt in their own way. This is my mantra for today.

I love you all out there!!!!!

Love one another please!

Peace

Jenn