July 10, 2020

It is after midnight. A few hours ago I learned that if I don’t start chemo immediately, my tumor could invade a blood vessel and cause immediate death. I am so scared. And I am angry that no doctor told me this horrendous fact. I don’t want to die from an internal hemorrhage. This is the second life threatening emergency I’ve had in the past 30 days – and my doctors didn’t tell me about either of them. The first I learned from a doctor at a different hospital who had never even met me and this one I learned almost a month after my surgery.

I am tired and I want to sleep but I’m afraid. How close to death am I? I have been saying that the area under the incision has become painful – that’s where the tumor is located. Maybe the tumor is growing again and that’s what I’m feeling. What is happening to me?

I am writing because I don’t know what else to do. I’m doing – that’s the point. I’m alive and doing. As soon as I turn off the light, I am alone and waiting – waiting for morning, waiting for the doctor to call, waiting to check on my insurance, waiting to find out if the tumor will get me first.

It feels like things have gotten too far. My medical oncologist didn’t tell me the tumor could invade a blood vessel and kill me right then and there. If I hadn’t had the bowel problem yesterday and reached out to the hospital, I wouldn’t have known I was standing on another life/death precipice. But I am.

I desperately need new doctors. I want to live.

Slept about 2 hours.

It’s 3:00 p.m. in the afternoon now. I have been on the phone all day with insurance and doctors. Here are the fast facts: My oncologist never called me even though the surgeon emailed him yesterday about my starting chemo ASAP due to the life and death tumor issue. So I called my oncologist. I cannot speak with him – only with a variety of administrators. They set up appointments for me.

Here are the problems:

1. The earliest I can start chemo is in 10 days (Does that mean my oncologist doesn’t think it’s an emergency? I asked to get it moved up but never heard back). I’ll be moving 10 days after that. Why start in one hospital when my second treatment will be in a different hospital? Hospital 1 would have to give me an implant in my chest to receive the chemo (a surgical procedure for which I will be sedated like the sigmoidoscopy – horrible). What if Hospital 2 wants a different implant? What if Hospital 2 doesn’t like Hospital 1’s cocktail? What then?

2. My oncologist set an appointment to meet with me to discuss treatment for the very first time directly prior to my chemo. So I won’t be given options. I’ll be told what I’m getting. I’d like the opportunity to read up on whatever cocktail they’re going to throw my way and then ask questions – side effects, etc. (For this reason, I asked for an earlier Zoom meeting which was rejected). It seems I’ll be treated just like I was in the hospital. My questions and concerns don’t count. They’ll all listen through glazed eyes and then they’ll do exactly what they want to do. IT’S MY BODY. Why doesn’t anybody get that?

3. Cost. I am moving out of state and there is a question as to whether or how much my new insurance will cover. I called my insurance; I spoke with the hospital billing office; I talked to the office in charge of insurance at the cancer center. No luck. No one knows the cost of any procedure. No one knows how much insurance will cover. No one will call the insurance company to find out (as I was told to have the hospital do). It all depends on billing codes and no one can say for sure what they will be. Who is the criminal genius who devised this system? Let’s not tell the American people how much a procedure will cost or how much they will have to pay and they can’t get the treatment unless they sign that they are responsible for the cost of it ALL. Wow.

I need to get treatment in my new state because there I know I will be covered. So I pushed a little today – I hope not too hard. I’ve been referred to a doctor who is out of town this week, returning next, and I wasn’t planning on reaching out to him at all. My friend reached out. But given this life or death – treatment now or never – state of affairs, I reached out directly, introduced myself, and sent him my medical records. I hope they understand. I hope I didn’t jeopardize their goodwill but I felt impotent just sitting here doing nothing.

And, as a final refrain, I will tell you that I am in pain. I just took Tylenol. I’m basically living on it though it no longer helps much. The pain is in the tumor and surgery region. I think the tumor is ramping up again. I hope it’s not too late.

Now I have work work to do – first time since the surgery – and I’m too worn out and in pain to do it but I have to.

Love, Molly2923

One thought on “July 10, 2020

  1. Get the implant. It’s called a port and it will make your life a lot easier. As for chemo, the basic cocktail is likely to be either FOLFOX or FOLFIRI. There may be additional meds, but your chemo will almost certainly include one of those cocktails. Things went fast for me too. I had my port implanted on a Friday and Monday I learned what chemo cocktail I’d be on and chemo started on Tuesday. Insurance can suck, for sure. One thing you can look into with your new insurance is whether they have case managers. I had one earlier this year to help guide me through the process to get my insurance to pay for a second opinion out of network.

    I’m not sure if you’ve joined yet, but please join Colontown at http://www.colontown.org. You’ll find great support there and people who know far more about this than I. The support group functions on Facebook and its secret groups. I wouldn’t know most of the things I know without them.

    Like

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