I can't cure you

I CAN’T CURE YOU

A few months ago I had a clean PET scan. That gave me a 3-month hiatus from chemo. Three months later my next scan showed cancer on my liver. I knew 2 things then; 1) my hope of our “no holds barred” plan of attack (chemo and surgery) didn’t work. When my oncologist saw that the cancer was back, she said the words I dreaded, “I can’t cure you.” 2) The cancer was in an organ. It was no longer on some innocuous breast tissue that I didn’t need to survive, it was on an organ that I did need to survive and it was an aggressive cancer.

Luckily, I had an option other than chemo. I had been receptive to chemo, which put me into that small group of 30% to 40% of people who were. The other 60% were SOL. Triple Negative Breast cancer is the deadliest form of breast cancer. However, chemo kills everything and it damned near killed me last time. I really didn’t know how many more times I would survive a chemo regimen. Nor did I want to put John through that again as I was completely dependent upon him.  Luckily my oncologist had trained at Moffitt Cancer Center in Tampa and had maintained close ties. She was able to pick up her phone and get the head of clinical trials dealing with triple negative breast cancer on the phone and set up an appointment for me the next week.

There was a list of criteria a mile long that somehow I met. They only want healthy people in their studies whose only malady is the breast cancer so that they can make assumptions regarding the treatment without having to wonder if factors from other illnesses played a part.  I had to have had 2 occurrences separated by a period of being cancer free, I had to have had at least 2 chemo regimens, I had to have had surgery at least once and I had to have had healthy liver, kidney, glucose and about 100 other blood tests that scored in an acceptable range as well as be within a height, weight, age, EKG, CT, MRI and bone scan score range. I qualified in every area but one. My PREGNANCY test came back as inconclusive. Obviously I could not be pregnant and the retest proved it but we got miles out it with all the nurse jokes, FB retorts and watching John strut around the ward hooting and swinging his fist in the air. We now have to refer to him as “the bull.”

After much waiting around, taking a nausea pill and steroid, waiting around, eating lunch, and more waiting around, I was finally allowed to take THE PILL. I was then observed for 4 hours for side effects. We had gotten there at 9:00 and didn’t leave until 7:00 PM. They gave me two vials, each filled with a steroid, a nausea pill and the test pill. I’m to take them every Wed and Fri. On Tuesdays I go to Moffit for testing and a complete exam. I even get a thorough eye exam. In 8 weeks I get the CT, MRi and Bone scan again. If the cancer has stopped growing, I will get this drug for the rest of my life unless it finally becomes an approved drug, which I can then get through regular means. The doc said it would probably take 10 years for it to be available to the public and that was one of the great perks of being admitted into a study – you get drugs 10 years ahead of everyone else.

IF IT WORKS for me, it will only harm the cancer, not the rest of my body, which in effect is a cure to me. While the cancer will never be completely out of my system, this drug could keep it from ever growing any more and with natural cell death, the amount of cancer could be reduced. Since I’m in the study I will get the drug for free until it becomes FDA approved.

If it doesn’t work for me and the cancer continues to grow, I may qualify for another clinical trial that will open sometime in the next 2 years and go on chemo in the meantime.  If I can’t get into the 2^nd trial then I am back with regular chemo, which will extend my life as long as my body can put up with the collateral damage.

In the last 4 years I have gone from hearing I have cancer to being told I was cured to being told I might be cured to being told I couldn’t be cured to the nebulous promises of clinical trials. I believe in positive thinking and choose to think this drug will work for me however, I have been on such a roller coaster, I’m afraid to let any hope in.  This is serious shit. I’ve made a will, bought insurance, made final financial arrangements and taken as pragmatic an approach as I can to the whole business of dying and its consequences. My faith has been tested. I have been forced to be more real than I have ever been in my life. Realizing that everything you have ever known, every memory you have ever stored, any plans for the present or future, even the deepest ties to other people will all be gone.  You simply cease to exist and life goes on without you. People will be sad for a while, and you’ll be missed for a while but life must go on and you will no longer be a part of it.

Strangely, my reaction to that was not to drop everything and party or to even allow myself to be self-absorbed. I regretted that I had not done more for others. The first thing my mind went to when it began to occur to me that I might actually survive this was that God had spared me for a special job. My faith returned in force. I wanted to teach in some poor country, work in an inner-city school again, buy a house for maladjusted students so that they could get away from lousy home conditions and concentrate on school. The next time I faced death, I wanted it to be with a better track record of service.

It no longer was a factor that I didn’t know what life after death would be like. I didn’t have to understand the trinity or the Bible or any church laws.  I only knew for sure that there was a God and that I had an obligation to him/her to use whatever gifts or talents I may have to help others.  I have no idea what I can do at my age with my health track record. That is something God is going to have to make clear.

One amazing thing is that John is actually considering a move to Tampa. He wouldn’t even talk about it before but at dinner tonight when David brought it up, he started to consider it. He said he had originally opposed it because he thought we would be encroaching on David. However, since David was pushing for it and it now seems we will have a lifetime relationship with Moffit, he actually said he saw more pros than cons.  I think that some of it might have been the effect of just having left his 2 adorable grandchildren and having a better realization of how important it is to be around them as much as possible.  David is dating an delightful girl and I don’t want to jump the gun or put any pressure on anyone but I think even he is starting to think about settling down and he actually wants me around!

This is all far down the road but it is impossible to relay how far I have come from first learning I had cancer in my liver to taking a little pill today that could totally change my life around. I guess I’m the kind of person that God has to take a brick to to get me to listen.  OK God you have my attention. What do You want?