I am terrified.
I spent the better part of the last two days being re-staged (how I hate this term. Most expect restaging to go only one direction - worse) and finding out what it all means. I was told I needed to be careful not to miss a window for HIPEC surgery if it interested me.
What that meant was getting a Pet Scan and CT Scan.
Sounds so simple, doesn't it?
My friend Sherri Robbins was with me. She went, in part, to validate me and my experience. She felt it so important, that she pushed herself past any reasonable place physically. She dared to tread where people with much less physical issues would fear to tread.
She shared with me what she was thinking, and having to deal with as we were in that environment, and we could both see why anyone would run for the hills when it came to dealing with what I am facing. Who would willingly face it?
I wanted her to be a first hand witness to as much as possible, so that there could be no question, no doubt, that what I am facing is real. At one point, she told me that for as much as I share and express - it comes no where close to what she expected. She said had she known what she was signing up for - she likely would never have gone. She was amazed by the fact that I had been there so many times - and have gone through most of the physical part of dealing with doctors and treatment by myself.
The fact is I could have done that this time, too. In some ways, I prefer it. The minute someone else is involved, I need to start being more aware of them than I want to be. Their emotions are involved. It alters the situation for me, and not in a particularly good way.
People might look at that perspective, or my seeming lack of support, and feel badly. But if they were going to feel badly about that, it is really more about them - than it is about me.
While it might seem to matter to have help that way, I do not need awwws, and I do not need cheerleaders. I NEED practical, tangible help desperately. I have spent the last year of my recurrence trying to get back to life, as the threat of it being taken away loomed. I acted against my doctor's wishes more than once. I tried to balance things that just have no way to balance. I watched my savings dwindle, as donations trickled in and words were in ample supply. All kinds of advice to keep positive, or things I could spend money on that would most assuredly help me.
I spent money I did not have on alternatives with the hope that more would come, with the hope that I could/would make money, or somehow, some way, people would begin to realize that even $1 could help me, and that they would enroll their friends in family in the idea. It would not take much to help me survive: about $2000 per month. It is not much, but when you do not have it, it might as well be 2 million.
I hear the skepticism of people. I hear I need a "spin doctor," someone who can "sell" me and my situation. I am in a horrible position. To look bad enough to need help, I have to really look and sound the part. I have to BE the stereotypical cancer patient. Add things like young children, a romance, or any other heartbreaking elements, and people might just be willing to help.
But here's the thing: I do not have those sympathetic elements. I am by myself. I also am looking to be positive and have the best possible outcome and experience here, why in the world would I immerse myself in the crap, unless I needed to? There are countless blog posts and videos that show that side of things, and when I am there, I get people telling me to be positive. I can't win.
I am now facing one of the toughest decisions, and I need to act within the month, or else have to face the possibility of a new scenario with yet another CT and Pet Scan, as well as an unwelcome allergic reaction to the dye that leaves me red and itchy the day after, and that occured after taking two equally unwelcome doses of steroids and Benedryl in an attempt to prevent that reaction. Might I have died, had I not? As I got the scan, I truly debated what it would take to walk away, to say enough, that I was done.
The Oncologist seems to want to keep me alive - at any cost. He tells me they will do all they can to help me have quality of life while being treated. Odds are good, it would be similar chemos to the ones I had, and despite my efforts to do all I could previously, including supplements, alternative therapies, using hypnosis, I still barely had a life while on treatment. Chemo to me barely seems like an option.
He then tried to tell me how miserable it is to die of ovarian cancer. What does that mean? I do not know, and I was not going to ask. My response was that sooner or later it could happen any way, with, or without chemo. His retort was that if I stay alive, there may come a new treatment that could ultimately work.
I can understand that, in theory and logic. But here is the thing: HOW do I survive in other ways? How do I pay the bills? How do I keep my insurance going? How do I pay for supplements? How do I do the things I need to to just survive? You do not realize how much that all takes, until you have nothing left to give.
Do I want to sit back and collect people's money? It may surprise you to hear the answer is NO. A big, fat no. I have tried a myriad of things to make money on my own, but it is not working.
When I was with Sherri, she offered to pay for a few things that I would normally need to pay for, had I been alone. At first, I told her to keep it. I kind of laughed. Some people may be so skeptical of me that they would think I would manipulate every last dollar I could, and yet, here I was telling her to keep her money, despite the fact that I could desperately use it. Once she insisted, I took it. I am really in no position to turn down the help. I also am all too aware of how uncomfortable the money conversation is.
If someone does not freely want to help me, I would rather they not help.
I would like to think there are good and ample reasons to help me, but there are times I wonder if I am delusional. After all, if I was right, why am I in the position I am in? Why are people so reluctant to give even just $1? I try my best to offer perspective that would not only help and empower me, but others. I feel like it often falls on deaf ears.
So many say they wish they could help, but then do nothing. $1 would help. Asking for help on my behalf would help. Sharing my story or videos or blog would help. But they do nothing, but pat me on the back and tell me everything will be Ok while the floor crumbles from underneath me, and the walls tumble down.
Is this everyone? No. And it is the only reason I am still standing right now.
I am grateful for what is, but you stand in the middle of a storm, and you see just how easy it is to focus on gratitude for more than moments at a time - if even moments are possible.
I stopped writing for a bit. I am having a reaction to the dye from yesterday. My foot is really itchy and red, and it seems to be extending to my thighs. I have now taken 50mg of Benedryl, and am hoping it kicks in. If it gets worse, I have been advised to go to the ER.
I am so not happy now. PTSD feels like it is being awakened. I am remembering some of the things that happened while I was doing chemo. Can I go through "all" of this again? Am I strong enough?
Basically, I am trying to hold myself together, as I lay here, with my feet over my head, wanting desperately to communicate my situation. There is no way I can likely cover it all. Even if I did, I would have to trust that whoever began reading this, has continued until they have gotten this far.
I know I write way too much for most people. It is too much in words, and too much in emotion. It is hard to grasp, or understand.
I am so scared right now. I had an advantage the first time. I had no clue what I was in for. If I walk away from this/medicine, I may be walking away from life. But to stay in it - especially without financial support - is nearly impossible. I can't stand the idea of more medicine or the ER, but even worse is an inability to pay for what happens as a result. I know the two should not be tied, but they are. It is impossible for them not to be.
I realize that many reading this likely have no clue what I am talking about, and no clue of what I have been through these last two years, these last two days. It is so annoying when doctors so casually suggest things, and shrug off others. I suppose it is a place they need to get to, but it sucks to be a recipient of what occasionally appears as indifference, and a true lack of understanding.
So desperate to keep me alive, when I can barely live.
If, and it is a big IF, I go the route I am thinking, I will be required to do chemo for 3 months, and hope that it does what the doctors want it to do. At which time, I have to hope that my insurance and my medical provider tell me my insurance will cover HIPEC surgery. I will likely be in the hospital a minimum of 3 weeks, one of which will be me in ICU. Recovery is long, as so is the incision and surgery. My abdominal area will be open totally, and it would likely be a 10 hour surgery. At some point after the surgery, chemo would resume for another 3 months.
The hope would be that afterward I would be cancer free for "several years."
I would have to do my best to rewire this feeling of going through hell to get there, if I am going to stand any chance of making it. But I am just so overwhelmed. I am just dealing with way too many things.
One could say "one whatever at a time," but when they are all crash landing within moments of each other, it can still overwhelm.
You may never be able to fully understand even a small portion of my situation, and quite frankly, I hope you never have to. But the thing is, I have to try to live within it, and unless I reach outside of it to people like you, I have little to no chance of surviving. If you don't know me, that might just sound sad, and it will end there. But there are others like me - some people you may care about. And those people may be silently desperate. There is a very quiet desperation for many in situations like this because reaching out is rarely an answer, and often can create its own set of problems.
This is not a safe space to be in. At any turn, there is a potential to have a losing situation. What people may think they want, is often not likely what they really want.
People tell me how "inspirational" I am, and seem to appreciate that, and yet if I fit the picture of the cancer patient in need, inspirational would likely be one of the last things anyone would say about me. I am not trying to be inspirational. I am just trying to be me. But in being who and how I am, I am precluded from those who would be inclined to help.
I have much more I need to write. But it is not going to be now. But it needs to get out. It needs to be expressed. It was horrible crying last night, but I think it had to happen. It needed to be expressed. I thanked my friend for being there. For listening. For witnessing. There was nothing that could be said that could fix or change a damn thing.
Since I have come to realize that there is very little that anyone can say to me that will truly matter, it let's us all off the hook. No one has to find the magical solution or answer - because there isn't one. Not a single person likes the sound of it, and I can tell it frustrates the hell out of many others, but not me. I get a sense of things in a way that is hard to grasp for those not in this position.
What this all comes down to is an urgent plea for help. I figure $20,000 will get me through the end of the year, when I will likely complete chemo. I will then need to start the climb up again, as I once again try to live life in the shadow of treatment. It took several months after treatment for me to feel like my head was back. It has only been recently that I have been able to somewhat freely move again, having had to deal with significant back issues for months. And I have been appreciating having hair again.
That could soon all change. I am afraid that without support, I will not make it. People so casually suggest that I do this thing for "only" $50 when I don't have it. If it was "only" to them, perhaps they might consider using that to help another in desperate need with it. I sometimes get frustrated and angry about things like that. There is a lot more I would try, if I could - but I can't. It is not from an excuse or a lack of trying that I say that. I have tried and tried and tried a lot more than most people will ever realize.
It is exhausting.
I am exhausted and contemplating a marathon.
I just don't know how this is gonna happen.
I need help. If you got this far, is it possible you can help? I realize it is uncomfortable. It is awkward. It is a whole lot of things, that if you were ever dealing with, you would want others to find a way around it. You might need it more than you could even imagine at the moment. Dealing with cancer is often nothing like what you imagine. People will surprise you. Total strangers will step up, while those you thought would be there will disappear. It happens all-the-time.
If you read this far, please consider doing something to help me have some faith that I can make it. Faith requires action. I am taking action by writing this blog posts, and others like it. I am taking action, by trying to find things to sell.
I am pleading with you to please take some action on my behalf, to extend yourself in uncomfortable ways. Am I asking a lot? I know I am. I also know that those who have hung out with me in this space, and have gone to those uncomfortable places have told me how much they have gained from it. I suspect the same might hold true for you. It is a tough "gift" to give or get, and I would much rather have no part of it. I can only imagine how you must feel.
I would rather not ask. Believe me. But I am.
If you would be willing to help, this page gives you some options: a tax-deductible option, a recipe booklet, some MP3s, artwork...a few ideas of possibilities to do and/or share. Thank you.