about today...

Today I realized I have not written lately. The second infusion of high dose vitamin c was exactly one week after the first and thus was the third. I'm writing the week after the third.

Looking back and wanting to be informative, hopefully so that folks, on any day, can use my example when comtemplating their own next move, I will talk about the dosage issue I ran into on week two. I began, the first of this year's vitamin c infusions at a 30 gram dose. Anything over 25 grams and up to 50 is charged as one rate. On the second week, I arrived and was told I would go up to 40 grams. I asked that the nurse convey to the doctor that I would sign a release of liability or whatever it would take to allow me to go up to 50 grams. The nurse said she would call for me. She later returned to say that my wishes would be honored. I chose to go up quicker because of the costs and my limited ability to provide myself the infusions, but also because I felt confident that last year, after gradually going up from 25 grams, I did very well with 50 grams as a steady amount.

At the third infusion, last week, I asked for a lab to be ordered and faxed to the location I wish to have it drawn. Follow up was required, but the ordered was placed and today I went and had the lab drawn. Interestingly and for me, even noteworthy, the new phlebotomist who put the tourniquet on looked nervous and couldn't find my vein by running his fingers over my arm. The female counterpart had the feel, so to speak, and as she put her hands right on the vein I know to always work well for output, I said to the young man, "If you might miss then I don't want you to try." He was prompt to say that he'd gladly let her....and I said that made me happy. She was extremely competent and it went as it should have: easy. I have learned to stand up for myself. There were far too many times last year I was hurt senselessly by incompetence. I'd like to avoid that.

Today I'm at a crossroad. I do not have any more vitamin c scheduled. There is no protocol for what I am doing. I ought to call Dr. Puc tomorrow and ask her what she can find in the research data. I just tried to find an answer to a question I came up with recently: would it have been better to bombard myself every 5 days or 3 days or? Is once a week adequate to have enough in my bloodstream to act as peroxide agents scouring anything that is possibly there but not yet showing up as a tumor on a scan? ...whatever is making the CA-125 number elevate progressively...please be gone...I mean that is what the mission of the infusions, afterall...and I am just curious what the best sequence of administration is with such a mission. I will provide a couple of url's attempted as links below to research I looked at...and if, by chance, anyone knows something more and can share that with me, I would listen and evaluate.

http://www.blockmd.com/blog/new-study-on-intravenous-vitamin-c-for-cancer

http://consumer.healthday.com/cancer-information-5/mis-cancer-news-102/vitamin-c-and-cancer-684595.html

http://www.cancer.gov/cancertopics/pdq/cam/highdosevitaminc/patient/page2

http://drhoffman.com/article/intravenous-vitamin-c-for-cancer-2/

...and this one I just found while creating this post, showing the research of the now deceased Dr. Riordan and colleagues:
http://www.doctoryourself.com/riordan1.html

I found dosages noted at the last site above and almost always infusions are administered twice weekly. I often feel a host of emotions over money versus getting to live...a gamut of emotions at that. Today I am working on my list of to-do's, knowing selling this house will provide me what I need...and embracing a bit of excitement when it surfaces for what it will feel like to have gone through the work between now and departing, all packed up.

Today I know I am at a crossroad because my lab results will show if there is any change in CA-125  number. What I just read has me concerned that I should have doubled up my dosages...I was hoping to not need more, but that seems likely. It feels crummy to not have a definitive source to tell me a protocol for my purposes...or a best idea of such...

I will end this by saying how strongly I feel the way in which research funding decisions are made is flat inhumane. The potential benefits of high dose iv vitamin c were negated by studies that used high oral doses of vitamin c. Sigh. I am hopeful that whatever info I gain through my experiences can somehow be of help to the goal of better understanding vitamin c's role in ridding one's self from ovarian cancer...with and without chemotherapy. I will post the lab results when they are back. Fingers crossed there will be some change noted...

Vitamin C Infusions: Round Two

This morning I drove out to the Brittonfield Office of Hemotology Oncology for my first infusion of high dose Vitamin C this round...this year. I felt good about it, too. I had never infused at that office; last year Dr. Puc was at the Community General site,so that is where all infusions took place. There are far, far more seats/stations available at the Brittonfield Office. It feels daunting that there could be a given day the seats would all be filled. Too much cancer...in too many folks' bodies...that is what anyone could conclude.

I got a nice nurse and we chatted lightly while she prepped me. Her insertion into my port did not hurt at all. I no longer choose to use the numbing agent and that is for the best. I told the nurse my desire: to have my CA 125 number go down. I told her I could never know to what extent the Vitamin C infusions had helped me because I had one each week throughout chemo and then an additional 6 weeks, if I recall correctly. She was prompt to tell me that she saw a big difference in every one of the patients who opt for high dose IV Vitamin C while undergoing chemo. All do markedly better. She then added that attitude was also a big predictor. Those patients who were negative and fearful had more side effects from chemo. Interesting anecdotal evidence.

Well I sat in my recliner and read on my cellphone. And interestingly enough, I had an email with a link to studies about high dose IV Vitamin C. It was not new information to me, but it felt good to read about all the hopefulness associated with the infusions while I was infusing with hopefulness. The total time for the infusion, including the fluid afterward that takes it's own 45 minutes, is two and a half hours. I grabbed an interesting book from a cart, read some of it, and did online reading while sitting there.

I was happy to walk out, feeling good, to go meet Ed and travel to live out the adventure I had been craving us to do: go to a Herkimer Diamond mine. The afternoon was spent driving about 70 miles to the mine and that left three hours for hunting. I did find quite a few on the ground and pounded many rocks in the hot sun. I feel satisfied with my lovely double terminated crystals and would like to go and get more and perhaps, with help, make an item of jewelry with them when I have found enough. Herkimer Diamonds are very cool, I like their energy, and rock hunting leaves one's mine focused and present. It is meditative to seek them out...well, except when trying to split a rock open with chisel and hammer.

I am going to bed tired and with some optimism. I am doing for myself what I can to keep me from needing chemo. I pray the Vitamin C infusions are going to work and will keep this blog posted.

...emotions...

I have come to see my writings as a form of therapy. I am one who realizes I feel strongly, deeply and perhaps too much. And yet the depth to which I feel seems part and parcel to being me. Maybe better stated, being me is too much for me, for I feel on an island alone. Maybe knowing we are each on an island alone, highly likely to depart the planet alone, is key to getting through the last chapters of one's life?

I struggle too much. And I wear my heart on my sleeve, knowing that leaves me vulnerably me. I have tried to change those things about myself that I feel do not serve me well, and in some cases, I have made considerable headway on the path of change. But in other ways, such as feeling so deeply, I seem hindered in ability to change.

I face the biggest heaping platter of problems to resolve or learn to overlook as has ever been in my life. That itself is a huge truth to state. And in some ways I am stronger, more able, more maturely grounded to push aside that which I have no control over, at least for a period of time. But in that other hard-to-accept way, I am so rawly vulnerable...so in need of external strokes since getting done with cancer treatment last year. And when I feel needy, I know not how to handle that properly. It seems as though when I most need to feel connected and loved, I do or say something wrong and push away what I want most. It is not at all intentional. I feel I am relating my truths, and I feel too deeply and say things wrong and when I most need to have others support, I seem to be without.

I share this, rawly, from a place of feeling on an island...realizing so very much and doing my best to accomplish what I can to advance toward reaching some goals. And even my goals are now in question.

I am afraid right now to talk about my CA-125 level rising more and my concerns. I want to be that brave person who boldly pushes past, despite the odds, despite this, despite that...and on a given day I may not be that brave any more. I feel stuck.

I have outside gardening type work I am completing to help my property look it's best. I have so much work ahead, on both coasts, that it feels daunting. I do the one step at a time boogie, but still get sidetracked into overwhelm from time to time. I realize that sharing problems is unattractive and not fun and am modifying how it is I even attempt to cope.

I wonder: will I get it right this lifetime? I know my shortcomings and have self-love nonetheless. I value my honesty, but know it to get in the way of the types of relationships I want and value most.

I, I, I. Why do I bother like this? What do my writings accomplish? I think I clarify for myself what I am feeling and why and then it is a form of release...but do my needs, my honest to goodness needs get better met for putting my story out there? Not really.

Perhaps I am coming to terms, slowly, with what it means to realize more about the journey of life and the myths with which we are raised and the desire to make them reality and...how I just don't seem to be the alchemist that can pull that off. It is the equivalent of losing my middle name and surrendering to what will be.

I'm about to take another leap of faith and begin Vitamin C infusions with the goal of lowering the CA-125 and not having to get back into chemotherapy as appears to be the trajectory my life is on...I shall post about outcomes because I am in a research group of sorts. Monies are not being put into research because pharmaceutical interests cannot profit from ascorbate, and yet some promising studies have come from the one research facility that is getting some funding in Kansas. As I charge and borrow my way through treatment, I would at least like to know that my one person sample can be public knowledge and maybe help someone else...down the line with a tough decision of his or her own.