Well, things are as they are. I decided I had to try the chemo and the prednisone, and the rest of it, and it is not how I want to live my life. It is not how I can live my life. The prednisone made my heart leap out of my chest, the chemo made me sicker than I have ever been in my life. All the worry about prednisone making me fat was unwarranted. I haven’t eaten for two days straight and lost four pounds in two days. Reassurances from the nurse that it was water weight doesn’t make me feel any better…so I have a decision. . .
I am not doing it. I am not doing any of the treatment. I tried it like I promised various people who know me in real life and it is not for me. I would be spending whatever I have left pathetically puking in a corner of my room wondering what was going to kill me first, the meds or the disease. I spoke to the doctor, and told her about the side effects and she said we could try something else. A different chemo drug, a different steroid. I politely refused. I cancelled my CT scans, my heart echo, my pulmonary function test and every single appointment I had booked. I am not going to do any of it. I don’t want to know what state I am in, I am going to live in blissful ignorance and probably live a lot longer since no one has yet told me I can’t. I will not be seeing the doctor, I will not be doing any conventional treatment. I will avoid doctors as much as humanly possible.
The doctors won’t do so much as give me a pain killer, despite seeing the damage to my joints and me telling them how much I am struggling with it. Getting up hurts. Sitting down hurts. Typing hurts. Lifting a cup? Hurts. Sick enough to warrant such terrible drugs, but not to be given any mercy? To be frank, they are good for nothing except making me want to simply give up on life. I had a dark couple of days. I am tough, I am a bon vivant, I love life and I love the life I have struggled to make happy for me and the Boy. It takes a lot to make me google euthanasia clinics. Now I have made the choice to go my own way and ditch the hospital and the doctors who don’t care about me I feel so very much happier. I felt exhilaration better than any drug once I decided I was just going to refuse treatment, and get away from the hospital.
What I am going to do is as many alternative therapies as possible. Acupuncture, yoga as long as my joints permit me, guided meditations, herbal supplements, cupping. Heck, I am happy to get on my knees and worship the Sun God if it would reduce the inflammation and some of the pain. I am going to make a bucket list and paint the town red. I am going to go and sit in a jazz bar and bliss out on music. I am going to live, damnit…at least until I don’t.
So . . . I just don’t know what kind of course things are going to take from here. I want to keep on blogging. Who knows, perhaps I will be able to go on longer than western medicine suggests I will. I am going to get stoned out of my box as soon as I feel the meds have cleared my system, and try and deal with some of this pain. I feel like getting on the back of a Harley, let the wind blow in my hair and hurtle towards hair pin turns on the 101, winding endlessly north, free as a bird. Now, that is medicine!
I would really appreciate any of you who know me better, accepting this choice. I will write to some of you personally when I have more energy, I promise. Please don’t be mad with me or ask me to try different meds. It just is not the way I want to go out of this world, or live in it while I have time left. Make mad suggestions for my bucket list. Make me climb hills, go swimming in a water hole…I don’t know….while I still can and don’t give up on me. I still think I can live a long time, at least long enough if I can find alternative ways of calming the inflammation raging in my body. Don’t burst my bubble. What’s the point?
So…I will keep on blogging. You might hear a little more from me in these little letters, but I will try and mark them so people know they are more personal ‘blog’ posts!
Live life and live life well, my friends,
“Your body is not a temple; it’s an amusement park. Enjoy the ride.”
I agree with Anthony. It might well be the way that some people want to deal with chronic disease, but not this bitch!
“I feel like getting on the back of a Harley, let the wind blow in my hair and hurtle towards hair pin turns on the 101, winding endlessly north, free as a bird. Now, that is medicine!”
That’s beautiful. Your journey through all of this has been on my mind. All the love to you. 💛
Thank you so very much for your kind words and thoughts. It has been a tough few weeks. The light in me acknowledges the light in you. as always, Detroit
As my favorite poet, Dylan Thomas, would say:
Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.