Sunday, January 27, 2008

Time to Live

How many times have you been told that you must have a positive attitude to beat your cancer? I can't count the number of times I have been graced with such wisdom. I don't think having a positive attitude makes cancerous cells divide slower, or keeps a lung tumor from growing or even helps you ace that PET scan. In fact, some of the most upbeat, positive people I know are dead.

However, I have learned and witnessed that not letting your disease define you and not being dragged down by the weight of all the pretty harsh things that come with it, makes living a whole lot more enjoyable.

It breaks down to this: you are diagnosed, you are treated, you go back to your life. What are you going to with that life you are going back to? You could be bitter and dwell in the fact you were dealt such an unfair hand or you could live. Really and truly LIVE. No one knows how long they have on this earth, but we were given a clue that our warranty may not be the best on the lot.

Recently, there was a terrible accident where a man was sitting in his living room, watching TV, minding his own business, when a car careened across his lawn and through his front window and killed him instantly. He never saw it coming. He never had a chance to say good bye to his loved ones. He never got his personal life in order.

We can do that now. We were given a warning that our time may be shorter than other people's time. We can get our personal lives in order. We can make that trip to a relative we haven't seen in ages. We can say "I'm sorry" to someone we know is hurting. We can do the things we never dared doing but now, suddenly, we have the courage to take that first step.

While we may not be able to control our cancer with our attitudes, we can control our lives. We all have a list of "if only's " in our heads. Our wake-up call has given us the opportunity to go ahead and find out about remedying past regrets or taking that risk we were always so afraid of before we knew what real fear really was.

We can choose what memories we want to make and what we want to remember and how we want to be remembered.

Make that call.
Give that hug.
Say, "I love you."
Forget that fight.
Remember what you love.
Remember who loves you.
Tell them.
Little things are just that- little things.
Take the dare and do it.

Time is slipping by for everyone on this earth. Some of us are lucky enough to know it and do something about it.

Monday, January 21, 2008

Here we go again

This story has a very happy ending. The head doctor has taken over my case and will now be the doctor who examines me. He will drive all the way over to the facility where I am getting treatments just to see me. In other words, there are still good guys in this world! And this worked out for the best! They are listening to their patients now and it really has made a difference. I wish there were more doctors like him so all of you could benefit.

Six years ago I was diagnosed with triple negative, invasive ductal carcinoma of the left breast. I had a lumpectomy and a full axillary dissection. I had six months of chemotherapy followed by a trip to hell.

The hell I am referring to was my radiation experience. According to radiation doctors it is not "the norm" which means, it didn't really happen in their opinion.

Let me tell you what happened.

I was sent to Facility A for my radiation treatments. I met with a very nice doctor who explained everything to me. They told me they would have to take X-rays to map me. This means they need to see where your heart and lungs are in relation to the radiation field so that they do not "hit" any of the vital organs with their radioactive beams.

When they were mapping me, I had to lie on an X-ray table for some time while measurements were taken and charts were drawn. I was topless for this, naturally. There were about three techs doing the mapping and a workman on a ladder changing the fluorescent light bulbs in the mapping room. No one but me thought that was disconcerting. Perhaps because I was the only one who was half naked.

When they were finally done and they gave me permanent tattoos to mark the spots they sent me to set up my appointments...appointments that would have to be every weekday for almost 8 weeks. The receptionist discovered that Facility A did not have any room for me in their schedule and I would have to go to Facility Hell instead. Facility Hell was a much longer drive for me, but I needed radiation so I went.

Upon arriving, I was informed that the powers that be in Hell do not accept the mapping procedures of Facility A. I had to get re-mapped.

When I had my lumpectomy, my surgeon used an incision much lower than where the tumor was. He did this so the scar would not show in clothes or a bathing suit. It is clearly written in my chart that my cancer field was at least three inches higher than the scar. In Hell they don't read your chart.

The mapping began with having more X-rays done and this time the added bonus of a CT-scan. Then they tattooed me. I noticed that they were tattooing me much lower than Facility A. When I could get their attention I mentioned that my scar was located "here" but my tumor was located "there" and pointed it out to them. Of course they thought I was making it up and ignored me. But I knew this was important so I repeated myself in a louder voice than I normally use and suggested they OPEN my chart and perhaps READ it.

They discovered I was correct.

Back on the table again I was mapped for a third time. I received my third set of tattoos. "THIS TIME, they got it right" they said.

Radiation began and I immediately had a terrible pain deep inside the breast. I complained to the head doctor in Hell and he told me it was nothing. I then started to swell. Not a problem, according to him. Happens all the time.

Radiation continued and I was burning badly. I had no skin left. I asked for something, anything to ease the pain. I was given free samples of aloe vera. This is the equivalent of a cement block to a drowning man. Other women I knew were getting gel pads to sooth their burns. Hell does not stock gel pads. Finally, a pharmacist took pity on me and gave me a cream to use. Biafine RE. It helped me tremendously. But nothing could touch the pain deep inside my breast. And nothing was stopping the swelling.

By the end of radiation I had a breast that was three times its normal size, orange peel skin, and red and maroon stripes across my chest. The doctor from Hell told me it was normal from the radiation. He had another doctor there as well when he was too busy to see patients and she agreed- this was a normal looking chest.

When radiation was over I did not do anything special for the folks from Hell. I had done a lot for my chemo team when I was done with that. But I couldn't wait to get the hell out of Hell.

My breast got worse. I was put on Cipro and it still got worse. Finally my surgeon insisted on going in. If this wasn't an infection, it was showing all the signs of Inflammatory Breast Cancer.

During the surgery it was discovered that deep inside the breast tissue had been badly burned. The skin had turned necrotic and I had an infection from that. The solution was to remove the bottom of my breast.

I have given you all of this back story because I am in Hell again. And it is happening- AGAIN.

When my oncologist told me I would need radiation I told him I will not use this radiation place- EVER. Apparently they are the only act in town. So I insisted on seeing the head doctor in Facility A. I told this doctor what I just told you. I also said I want my treatments in Facility A and NOT IN HELL. He promised me I would only have to go to Hell once, and that was for the mapping.

Once in Hell you can't get out. They told me that I must have all my treatments there. They assured me that the doctor who had mistreated me so badly was no longer there. But the other doctor still was and now she is in charge. I told her my tale and she said she only heard of that happening once to someone else and it wouldn't happen again because Hell has been cleaned up and it is new and improved.

Wanna bet?

The pain started this weekend. If you are a regular reader of this blog you know I do not complain about pain. I am the one who had the bilateral with immediate recon on just tylenol, remember?

It was the same pain from six years ago. Only this time I have no breast tissue to be turning necrotic. It was all removed. So just what are they killing? My pectoral muscle? My chest wall? I am not even going to complain about how difficult it is to swallow because my throat is swollen from the radiation that hits it.

I used to have a doctor who would rate pain like this: Can still walk pain; need to lie down pain; jump out the window pain. Jump out the window was the one that you are meant to call a doc or go to an ER. I had jump out the window pain this weekend. I didn't call the doctor, for obvious reasons and what would I do at an ER? All they can give me are pain pills and I can't take them. So I dealt with it.

I went for my treatment today. I told the techs how bad it was. The techs are very kind and were concerned. They insisted I see the doctor. She was not happy to be interrupted. In fact, she left the door open to the exam room to let me know I guess just how much of a rush she was in and what a monumental inconvenience this was. Oh yes, I am back in Hell alright.

She told me I couldn't possibly be having pain because I have no breaks in the skin. I quietly reminded her of what happened six years ago. I had no breaks in the skin when the bad pain began, the surgeons had concluded that they had burned and killed the tissue probably the first week of radiation. She countered this with, "There is no record in your chart of you having any problem with radiation six years ago."

"That is because you ignored it then and I wound up having to lose half my breast because you kept blowing me off." I said.

Her response? "I am going to have to see if that really happened. I have to get your chart from the surgeon who supposedly did this operation on you."

You know, I have had cancer twice. I just finished nine months of chemotherapy. This is totally unacceptable. I begged the head of this radiation practice to not send me to Hell again. And here I am- with the same problem.

So I have left word with him. I will see if he calls me back.

Patients are powerless so often in these situations. When no one listens to you, when the doctor looks at you and implies that your documented history never happened... when you are treated like an annoyance instead of a patient. It wears you down. So much so that you give up trying to fight it. You accept the treatment because you are just so sick and tired of being sick and tired and God if we have to fight our doctors now on top of cancer then what is the point? So we take it. And we wind up with serious complications because of it.

Not this time.

I have a voice this time and I will be documenting my journey into Hell here where many, many people read. And if things start to get worse I will name the facility and the doctors.

I am taking back control. I have had enough.

Please bare with me, friends. I will still have regular postings. But there will be updates on this situation. And if any of you want to add your own horror story, please contact me. I will be glad to add them here or on the website.


What part of No Surrender does Hell not get?

Sunday, January 6, 2008

Criminal Behavior

I am in a catch 22 here- I want to name the perpetrator of the criminal behavior, but if I do, then they can do more damage to me, if that is even possible. Forgive me for being vague- trust me I want to scream their name from the highest rooftop.

I have had the same insurance carrier since 1992. First it was a group plan, then it went to a private plan. Then I got cancer and I now I am stuck with them forever-and I am at their mercy. Mercy is not something that they have a lot of.

I have been denied many things over the years. MRIs, PT scans, etc. But they eventually get approved after many letters and phone calls and hounding.

When I was diagnosed for a second time last February, they approved my surgery and they approved my plastic surgeon because he is the only person in the area who is able to reconstruct previously radiated skin. The surgeries went well. I started chemo and had a few skirmishes with them approving certain drugs, but they relented.

Then one of the tissue expanders ruptured. This is not a life threatening event. However, it is threatening to the future of the final product of reconstruction. If a new one was not put in place, I would lose the pocket created and thus not be able to get the final implant.

The first letter came stating I did not need a new expander.

The second letter came stating that they are no longer covering me for plastic surgery.

These were responded to- and the Federal LAW that was passed that forces insurance companies to pay for reconstruction after breast cancer was quoted.

The third letter came that stated they will not permit my plastic surgeon to be my doctor- ever again.

This doctor- the only one in the area who can do the complicated and intricate work that my previously radiated skin calls for- is no longer allowed to treat me.
We countered with their original APPROVAL of him.

They returned serve and said that they made an error... and I should stop abusing the system.

We got the ACS involved and the NY State Attorney General's office. At the eleventh hour, while waiting in the OR in the only time slot that I could get the surgery between chemo breaks, the "conditional approval" came through for a one time exception for this ONE procedure and that in the future I was not to "attempt to get around" the system again.

They feel that a local plastic surgeon who specializes in children's cleft palate deformities can be the one to finish the intricate work that my plastic surgeon pioneered. I met with this new doctor. She is lovely. She also thinks they are out of their minds and refused to complete my reconstruction.

Time passes and I had chemo to complete so we have put the fight for my implant exchange on a shelf until we need to haul it out again.

Chemo is over. Now is the time for radiotherapy. I had four positive lymph nodes with cancer that went outside the lymph nodes. This means it could have spread to the subclavicle nodes, the mediastinal node as well as the chest wall. I have no option. I need radiation and a lot of it.

I was mapped for it and tattooed. They even had to deflate an expander to get a better shot at the tumor field. I am scheduled to begin tomorrow morning.

I received a letter in the mail yesterday from my insurance company. Their medical director has decided that I do not need radiation. He says it is "not medically necessary" he also says that "radiation has not been proven in the treatment of breast cancer"

I would like to know who this person is.
I want to go to his house.
I want to see how he lives and look him in the eye.
I want to meet his kids.
I want to know what kind of a man decides the fate of people's lives.
Then I want to talk to him about his medical credentials. I will show him the thousands of studies on the benefits of radiotherapy. I want to ask his wife when she had her last mammogram. I want to know how his mother is feeling. I want this man to see the face of one of the thousands of people he so cavalierly dismisses and declares not medically necessary.

I am not going to just fight for radiation tomorrow.
I am going to fight to have this man removed from his position.
What he has done is criminal.
And I am not just referring to myself. I know of other women who he has decided that they do not need Avastin for their mets. Who he feels a diagnostic breast MRI is not necessary in a breast cancer patient with dense breast and a history of DCIS and ALH. I also know he denied my friend Tom the proper treatment for his lung cancer and he died while waiting for his appeal to come through.
I want this man to pay for what he is doing to those of us who are too sick and too tired and too worn out to fight.

I don't only want my radiation to start tomorrow.
I want this man- the medical director of my insurance company- to pay.

Tuesday, January 1, 2008

Thank God That's Over

2007: BUH BYE!

What a year. I found the new lumps Christmas of last year. I spent the entirety of 2007 in Cancerland.... a place I thought I was done with.

For someone as diligent as myself and as big a pest to doctors, it was such a shock that round two was discovered so late and required SO MUCH. Bilateral mastectomies, nine months of chemo that just ended, and next, radiation.

I never thought I could survive chemo again after 2001, and it scared me. I just wanted to get through it and prayed I would be able to manage it better than last time. I knew what was ahead of me so all I asked was to be able to go the distance.

It was a rough nine months and I had to really push myself. But I did it. I went the distance. It was a long hard fight and now it is done.

I know that rads won't be any joy ride, but I'm ready for them. I am stronger now and getting stronger every day... because I found out something in 2007: I can do anything.

THIS sums up 2007 for me: