Started radiation yesterday

The first 7 sessions are a concentrated radiation dose with a machine called "AccuBoost" - your breast is squished in like a mammogram and the boost lasts 1/2 hour. I read a book. Because my surgeon did such a fantastic job and left markers in my breast, I was eligible for this process that focuses just on the cavity. This is like what I originally wanted, the partial breast irradiation, only this is from the outside while the PBI is from the inside.

Then the next 26 sessions are the whole breast radiation. I have had thoughts of not going back after the first 7 are completed - what are they going to do to me if I just don't come back? But I bought myself a ticket to see Cher in Las Vegas after the completion of the whole treatment session, sort of as a present for completing the whole damn thing. A Good For Me! As my neighbor across the street who is also dealing with BC said, radiation is just an insurance policy. Oh, and another neighbor was diagnosed last week. That makes four women in eight houses.

There is a lot of money in the cancer industry - the AccuBoost people give you a plushy pink bathrobe that you wear every day you go to treatment. I may hate the color pink when this blip in my life is done. But I also may love it even more!

And then Elizabeth Edwards died today and I felt sorrow. And then I looked up what kind of breast cancer she had. I bet I'm not the only person who did that.

But I'm happy and working and going swimming in the morning.

Update on this trip!

Well, I had it all worked out - get a bilateral mastectomy and reconstruction and be done with it. No radiation needed. But the Universe keeps talking to me and I hope I have finally heard the right words.

Dr. Ben Anderson is the first surgeon at Fred Hutch I saw after I was diagnosed in April. Because Fred Hutch is a ways away, I found a surgeon closer and she did an excellent job. But when I decided to have a mastectomy he is the one who works with the reconstructive surgeon at the UW - Dr. Anderson takes them off, the other guy puts them on. Already seen the reconstructive guy, everything is fine. Dr. Anderson is also friends with the doctor in Arizona I wanted to do partial breast radiation.

So my pre-op with Dr. Anderson was last Wednesday. I expected him to be delighted with my decision. I was wrong. He said I was trying to hit a nail with a sledgehammer by having a mastectomy. All I needed to do was whole breast radiation and take drugs and I would be fine. We can cure breast cancer, he said, we cannot cure metastatic cancer. Breast cancer is the most widely studied cancer, and there are many studies that say if I would just do the radiation I would be fine. He even pulled out how serious the surgery was and how one of his patients was in a walker for 2 months afterwards. I got his point.

That sums up the hour in a few lines. I shed a few tears, promised I would consider it. Two hours later he called me and asked if I would be interested in talking with one of his patients who had just finished radation and was doing well.  She was a lovely woman who indeed had no side effects and other than going 33 times she was fine.

So I called the oncologist who scared me away from partial breast radiation and went to see her Friday. She was thrilled to see me. I start the radiation process tomorrow. I'm going to ask her what makes the number 33 magic.

I am sad, I feel like I got beat up to the point of giving in. I just wanted to stand up for myself against the onslaught of fear that the medical community permeates every visit with.

Bu I want to feel joy at this decision.

Facebook September 27

Whoa! So who would have thought I would decide to get a double mastectomy and reconstruction? Not me!! Well, my decision literally happened overnight, but there were hallmarks along the way that guided me.

 

Happenstance appeared a couple of days before my appeal when I met 3 women who had had mastectomys - and each one of them told me the only regret they had was that they didn't have a double mastectomy. One said each year when she got a mammogram she wondered if this would be the year cancer would be in her remaining breast.

 

I was expending a lot of energy trying to persuade my insurance to pay for partial breast irradiation (PBI) instead of whole breast radiation. My in-person insurance appeal was set. To bolster my appeal, I saw a new oncologist the day before my appeal - I wanted her notes that she would not do PBI on me. I picked her because she was close to my house - that's it.

 

She was so earnest and passionate about what she thought I should do - whole breast radiation. She explained how my cancer had learned to travel to my bloodstream in a year and I had the chance now to seriously retard - and maybe prevent -  it coming back. She drew pictures and explained why PBI would not reduce my chances for recurrence below 15%, and because I had two types of cancer she thought the odds were higher. I imagine I had been told this before, but there was something about her earnestness that propelled me to rethink my whole 'less is more' strategy. She offered to get me started on radiation right then and there. I declined.

 

That evening I made my decision. I called my surgeon. I cancelled the insurance appeal. I will never have to wonder about the cancer coming back.

 

Today I saw my plastic surgeon and it turns out that the UW performs something called DIEP - basically taking fat from your tummy and making new breasts. The recovery is faster than ever and the results are even better. This is state of the art surgery and not done much outside of the Northwest. She is on the staff there and I will see them this week. She also told me I was a perfect candidate - healthy, strong, with a good amount of tummy fat (well, she didn't quite say it that way, but I knew what she meant!). So not only do I get new breasts, I get a tummy tuck to boot! I could go on about all the good things she told me about this procedure, but suffice that this is really the lemon tree making lemonade ... and I'm joyfully looking forward!

 

The one thread that has stuck with me through this is how critical your support system is when you are dealing with cancer. Thank you all for being my support system. I save all your notes and have reread them when I feel a bit low. I am fortunate, lucky, blessed and loved to have you. I want to be able to share with and listen to other women over 50 who get breast cancer, and I'm sure the universe will guide me there, too. When I have surgery scheduled I will let you know.

 

My plan is to run the Tucson Half Marathon on Dec 11.

 

LOVE TO YOU ALL - THANK YOU!!!!!

 

 

 

Radiation problems!!!

Now we come down to it. The industry standard, or current guidelines evidently state that people who have tumors larger than 3 cm are not eligible for PBI. There is no reason given, that was just an arbitrary number that was decided upon during early PBI clinical trials and it stuck.

So insurance companies won't pay for PBI unless the tumor size is 3cm or less. Mine is 3.3 cm. So screw me, the insurance company says. Too bad for you. You have to have your whole breast radiated every day for 7 weeks, and a corner of your lung will be scarred, and hopefully the radiation won't harm your heart. You will be so tired you can't work full time. And oh, yeah, once you've had your whole breast radiated, if breast cancer comes back in that breast you can't have a lumpectomy, you must have a a mastectomy. All because you are .3 cm over the limit.

But PBI? That only takes 5 days and you won't be so fatigued you can't work. And it is just as effective as WBR, at least that is what the trials say. Statistics can be twisted and misread and even altered to say anything. And they certainly do where breast cancer is concerned. But that is another post.

Oh, you found a doctor who will do PBI on you? Oh, he is a pioneer in the field of PBI and has done clinical trials with women over 3 cm? He says 3 cm is an arbitrary number, but your surgeon did such a great job leaving markers that he has no problem offering you PBI?

But your insurance company says no? They don't care if you don't have any radiation at all, they have to stick to 3 cm? Current guidelines keep changing, and with breast cancer they are changing even more rapidly. My neighbor had breast cancer 20 years ago. She had chemotherapy once a week for a year - and ended up with open heart surgery to repair the damage. That is not a guideline anymore. There are still PBI trials going on - companies are making newer machines - doctors are being educated. This is not experimental, not investigative, not out of the box. PBI is an industry standard! 

So if I found a qualified doctor whose letter says that 3 cm is an arbitrary number and my surgeon wrote a letter supporting PBI for me, why won't you pay? Why are you making my stress level go up? Why don't you see the big picture? If I do radiation now the odds of recurrence go down. PAY NOW, OR REALLY PAY LATER - ALL OF US!!!

Why are you doing this to me????? Why do you make me cry????? God I hate Regence.

My sister called me

I haven't heard from Laurie since July 30. It was a nice surprise when she called. Amazing to me, when she asked how I was doing I got a catch in my throat and what poured out was that my family had abandoned me and that I had finally told Mom and Dad that their job was to call me once a week. She asked if they had done that and I said yes - then she apologized profusely for not staying in touch with me - she said she was sorry a lot of times, had no excuses, and I said it was nice that she called. She said she would call me each week, too. She has been having trouble with plantar fascitis and I told her to find a physical therapist.

I didn't know I would get a catch in my throat. She is hoping I can come to Florida in November, although Ross's job may move to California in January. I told her I am not making any plans right now until I get this radiation thing worked. Forgiveness goes a long way, although not with my other sisters. Laurie had talked to Mom previous day and Mom had not mentioned me at all. Mom is too scared to talk about the sisters with each other, afraid Carla and Marcia and Sherrie will yell at her again and call her a gossip, I think.

Labor Day Weekend

A lovely girlfriend offered me time at her retreat on Harstine Island, out past Gig Harbor on the peninsula going toward Shelton. Her place is on the point close to the water. So within an hour of arrival I have braved the cold waters of Puget Sound and my whole body is happy. I spent an hour in the water, sorta standing with the water clear up to my neck, just watching the boats and letting time pass. I thought about the insurance issue, and realized there is nothing I can do. They turn me down, they don't, well, I will deal with it next week. Maybe I go Wed and maybe I don't. I was told by Boeing that Regence has declared this radiation a medical necessity, and if they turn me down to go to Arizona they will have to find me someone within 50 miles who will do my size of tumor. That's okay with me. I've done my due diligence and they can, too.

I am really thinking how to make sure this experience helps other women. I don't want to get breast cancer and let the experience go to waste. I want to change my life but I don't know what that looks like. I just know that I am so blessed with the community of friends that I have surrounding me. I ran into Mary this morning out on her run - she was wearing a scarf around her head. I saw her  3 days ago and she showed me her hair was just falling out in handfuls. So yesterday she shaved it all off. She said her head hurt because it wa falling out. She gets her real-hair wit next week. She is another women who will not become a victim of breast cancer. I still wonder how three women who next door neighbors all got breast cancer ... we joke that it must be the water, but I wonder about the environment.

Oh, man ... sigh

The hardest part of dealing with all this is when the tasks, the calls, just the daily things you do slip through the cracks. It is unlike me not to return calls, to ignore requests, to not follow through. But yesterday afternoon I had enough of dealing with this insurance fiasco. I let it go - let it all go - and just read a book. I thought that my brain needed to untense - and I feel better today. Did Pilates this morning and Donna taught me Body Mapping, a way to clear out my joints and let my body repair itself. My surgery arm already feels more mobile.

Boeing Clinical Advocacy called this morning and she is going to call Dr. Kuske's office and see if she can get past the gatekeeper and talk with him. I also faxed her everything, and Dr. McFall wrote a letter supporting Dr. Kuske and she got that, too. I've prepared myself to not go down to Arizona next week. One more thing to take care of - the airline ticket - what to do? I also paged Dr. Ben Anderson this morning but he has not returned my call. My thought was that he could call Dr. Kuske for me, since they are friends.

Just writing this makes me tired. Got a lovely card from Mary Ellen Johnson - how did she know I needed it???