Thursday, January 19, 2012

Just the Beginning...

Seriously? I didn't think that my first battle would be just to get an appointment with someone who can help me. It's been a lot of phone call after phone call and waiting on offices to do their part. I've had to send my records to the oncological gyn's office, but had to request, receive, sign and email back a med release form to have my records faxed to their office...wait, wait, wait, call, call to make sure the fax was sent (took like a week).
.
Then the little gal at the gyn's office told me on the phone, "This is just your maternity record information. That isn't helpful." Actually, that is the only provider I've seen for the last 7 years and yes, it would probably be helpful, since it talks about all my girl parts and how well they work, and my PAP tests results are in there, and my blood tests, and mention of my BRCA2 and breast exams... it's useful information. It seems that they'd tell you everything that you need faxed over from your provider all at once...but after several times back and forth, then they tell you that they need a referral faxed over too. Another phone call, two or three phone calls (with provider and follow up to ask why it hasn't been faxed yet after 2 days). I do love my midwives and I know they have a lot to do. It's just been slow goin' and I wasn't expecting that it would take me so long just to get an appointment with the onc gyn.
.
I have called my insurance company so many times too...about which providers are in-network, about what procedures are covered, about meeting my deductible and what my out-of-pocket max is, about what expenses are able to be used toward meeting my deductible. The biggest disappointment has been that I really wanted a particular plastic and general surgeon at Huntsman Cancer Institute. Weird enough is that the plastic surgeon is in-network, but he only operates at Huntsman and that facility is out-of-network. I would end up paying $4,000 more out of pocket if I go out-of-network.
.
After so much back and forth over several days on the phone with the surgeon offices, and the insurance, I broke down on the phone with the plastic surgeon receptionist. My insurance had "false hope" suggested that I ask the plastic surgeon's office to write a letter stating that they would be able to provide the best care and for this reason they should be able to be treated as in-network for me. I thought it might be a long-shot, but called the plastic surgeon's office to explain my last-effort at being able to go to this surgeon who came highly recommended. The office receptionist told me that they had tried that sort of thing before and it never works and they really weren't interested in pursuing that avenue. It seemed far-fetched enough that I didn't push it, but sobbed to her a bit. So frustrating.... for the past few years, I just figured that Dr. Neumayer would be covered by my insurance. HOW CAN THE HUNTSMAN CANCER INSTITUTE NOT BE AN IN-NETWORK FACILITY???????????
.
I do have an appointment now with an oncological gynecologist on Feb.9th. I'm compiling a list of questions to be answered and will bring Dan along so he can hear all the details and about my risk from the physician. He needs to hear it from the physician. I think it will help him understand how important this prophylactic oophrectomy is. The genetic counselor who told me I was BRCA2 positive recommended Dr. Soisson. She said he has expertise in the genetic mutation area. I realize there are a lot of physicians who can perform an oophrectomy, but it's somehow comforting that Dr. Soisson knows more about patients like me and my risks.
.
Since I am still breast feeding, I'm not exactly sure when I will have the surgery. That's the biggest question in my mind. I didn't get James used to a bottle or binki early on and he doesn't take one, he just chews on them, so bottle feeding would be a bit difficult if I had to stop breast feeding early. I do want to get the surgery this year. Today I tried Lani's sippie cup with James. He gnawed on that too, but it seemed a little easier for his little 5 mo old mouth to hold onto. I'll keep trying, just in case that's his only way of getting nourishment besides his solid foods.
.
Somehow too, I think there would be someone at the Huntsman Cancer Institute who was a "High Risk Care Manager" and could walk you through what you needed to do and who you needed to see and would take care of all of your insurance issues and would be able to work with you to give you a time line of when the surgeries would be and when the fills would be and how long this whole process would take. I am my own "care manager", so I am reading as much as I can and talking with as many people as I can. That's all I know how to get the best results for me.

The Moving Force: Friends and Family

There have been many wonderful people who have listened and shared their time with me as I begin to sort through the options and formulate my personal plan of action.
.
FORCE
I've only been on the FORCE (Facing Our Risk of Cancer Empowered- for genetically predisposed individuals) website once or twice. I found the messageboards and searched through there. There were a lot of people asking questions, and then there was a gal who had just had a nipple-sparing prophylactic mastectomy and she said that if anyone had any questions, that they could contact her.
.
I e-mailed her and she has been such an angel of comfort. She answered so many of my questions and she told me all about her story and her experiences through the surgery. When I asked her questions about how she felt about her breasts when she looked in the mirror, she was honest and said that she cried for a while. I told her that I was afraid that Dan wouldn't be as attracted to me....I know Dan loves me and will love me, but I don't want to be disappointing for him. She totally understood and said she had felt the same way. She said her fiancee is incredibly supportive of her decision.
.
She is very young, not yet married and hasn't had kids yet. She is sad that she won't be able to breast feed her babies, but she wanted to jump on her risk as soon as she found out she was positive. I am grateful to have been able to have the children that we have and breastfeed each one without having gotten ovarian or breast cancer yet. We have been blessed greatly in that regard. And yet, many times I am breastfeeding James and cleaning up cereal messes, or sorting mail, not even paying attention to the beauty of this shared time together. But I am grateful for those sweet moments when James is eating and pops off to smile at me, then jump right back on for a little longer, till the next smile...
.
Grocery Store Encounter
About a year ago, I was in the cereal aisle and for some reason struck up a conversation with a woman I didn't know. I found out that she planned all the activities in our stake, that she had 6 children... and that 9 years prior had undergone a unilateral mastectomy. She had just gone through reconstruction a year prior to our meeting. She had waited for reconstruction because when she found out she had breast cancer, she was 4 months pregnant. She underwent a type of chemotheraphy that is indicated safe during pregnancy. A week after the baby was born, she was put on the more powerful chemo. She couldn't breastfeed that little baby. She had two more children after that and breastfed and bottlefed them, saying that she never knew if she really had enough milk for her last two.
.
I called her up to talk to her for the first time since I met her in the grocery store. I keep thinking that maybe I had that initial conversation with her for a reason, that maybe she'll be the one to share some important information with me that will prove useful or that she used a surgeon that maybe I will. She was great to talk to and very helpful. The main points I took from our converstaion were that even though she ran 4 miles a day and was very fit, she was surprised that the initial mastectomy surgery was so painful and took so much time to recover from. Sje also shared with me about her nipple experiences. Her surgeon took skin from inside her thighs to recreate her areola and nipple. He feels this procedure makes a more natural looking nipple, but her nipple soughed off. She told me about a product that is injected under the skin and raises up to create a nipple. I had never heard of Artecoll.
.
"By transforming the surgically created breast mound into a more natural-appearing breast, nipple-areolar reconstruction can significantly enhance patients' perspective of their overall aesthetic result and can improve patient satisfaction. The most challenging aspect of nipple reconstruction is, however, the creation of a 3-dimensional structure with the dimensions and contour similar to a natural nipple. Various techniques have been used in an attempt to achieve long-term nipple projection, including local skin flaps, cartilage and fascial grafts, and nipple-sharing techniques. Irrespective of the technique used, a common disappointment is the loss of projection overtime. This phenomenon is particularly evident following implant-based breast reconstruction. As a means to increase projection after nipple reconstruction, the subcutaneous injection of Artecoll may be useful. Artecoll (Artes Medical, San Diego, Calif; Canderm Pharma Inc, Saint-Laurent, Canada) is an injectable substance that consists of inert, nonbiodegradable poly(methyl methacrylate) microspheres suspended in a partially denatured 3.5% bovine collagen. After the subcutaneous injection of Artecoll, the collagen carrier is degraded by the body within 3 months and completely replaced by a matrix of autogenous collagen at a similar rate. Because the microspheres are nonbiodegradable and too large to migrate to be phagocytosed by macrophages, tissue augmentation is expected to be permanent. Thus, it is hypothesized that the subcutaneous injection of Artecoll will provide long-lasting nipple projection with minimal patient morbidity and create a more natural-looking breast following postmastectomy reconstruction.The purpose of this study is thus to prospectively evaluate the efficacy of Artecoll in augmenting and maintaining nipple projection in the setting of postmastectomy, implant reconstruction." The Efficacy of Artecoll Injections for the Augmentation of Nipple Projection in Breast Reconstruction January 4, 2010
.
Dental Assistant
My mother has gone through three bouts of breast cancer and has been on several drugs for numerous cancer-related things. One of the results of all of the drugs is that she has had dental complications. The dental assistant at the office where she was getting some work done said that she would be happy to talk with me. I've had her number for a long time, but now that I'm serious about this endeavor, I gave her a call last night. She was great to share her experience with cancer, her surgeries and her reconstruction. She gave me the names of her surgeons.
.
That has been the most frustrating thing for me....HOW AM I SUPPOSED TO FIND THE PERFECT SURGEONS????? There is no comprehensive list I've found of general and breast surgeons. If I had that list, I think I would call each office and ask what proceedures they specialized in and where they cut and how they reconstructed the nipple, and how they solved after-surgery asthetic issues. I could do a lot of screening out just with office phone calls and then try to find physician reviews or speak with OR nursese and OBGs who could give me a better idea of the physician's work.
.
This lady was 39 (two years older than me) when she had her mastectomy. Her mother had been on the fertility drug, Diethylstilbestrol (DES), back in the day that ended up effecting their offspring's fertilty and increased their breast-cancer/ovarian cancer risks. She was only able to have one child and because of her ovarian cancer risk had an oophrectomy as well.
.
I learned a few new things from our conversation. She said that a bit after the silicone implants settled, they looked like two big balls on her chest, an appearance she referred to as "shelving". She said that her surgeon is one of few who does a lipo of fat in one area and performs a "fat transfer" onto the top of the implant to give it some padding. This solves the "rippling" effect issue where you can see the ripple of the implant since it is just implant under skin and gives a more sloping, natural appearance. She said that after the fat transfer, her breasts look Fantastic! I don't know if TRAM or Fat Transfers are an option for me. I don't know if fat from another area of my body could be succeptible to cancer.
.
I had also been a little worried that a hysterectomy/bilateral salpingo- oophorectomy is going to throw my emotions into a rollercoaster ride that I won't be able to control since I can't be on estrogen or pseudo-steroids. She said that after her surgery, she didn't find that she was a crazy lady or anything like that at all. She said that her hot flashes were unbearable and finally her pysician prescribed a drug called Gabapentin. It is indicated for epileptic seizures, but apparently controls the number and intensity of hot flashes as well as estrogen.
.
I have received such great information from these three women that I had never read about in my online research or in books. I feel like I need to keep speaking with women so I can have all the information I need. I don't want to look back and say, "Oh, I wish I had known about Artecoll or Gabepentin, or ..." I think I'll jump on the FORCE messageboards again and see what other information I can gather.
.
Mom
Of course, this lady is the one who has been on me about getting these procedures done NOW, like yesterday! She is pushing me forward and asking me when I am going to get appointments so that I'll get serious. Mom is the one I can cry to or share the latest information with. Mom is the strongest women I know... and I hope I can be as amazing as she is through this all.

My Story...

As a youth, the scant moments considering my future years were filled with visions of vibrance, a radiant glow, spending time with family, strong bones and health filled days. I think those days are still mine... that is what I am fighting for.
.
Isak Dinesen shares "To be a person is to have a story to tell." And so it's my turn. For me to organize my thoughts, share my fears and gain strength from others, to be a resource for others fighting, but mostly for my husband and my children to know that mommy is fighting to be in their lives and to gift them strength when they need it most.
.
I am BRCA2 Positive. I was pregnant with my second child when my mom was going through the aftermath of her third breast cancer. Her oncologist recommended she be screened for genetic mutations predisposing her to breast cancer. She was BRCA2 positive and urged us girls to be tested. My 2 sisters and I went to genetic counselors and were tested. My sisters do not carry the gene, so they won't pass it on to their children. My genetic counselor and I were sitting in her office and she asked me, "So, do you have an idea if you are positive or not?" I thought it was a question that was wasting time, but I guess she wanted to prep me somehow? I told her that I could very likely carry the gene, but didn't know. "You are positive....mlah, mlha, blah, mlha, mlah...for the BRCA2 breast cancer gene." I heard her speaking the words, but my mind was resting on "You are positive" and in 30 seconds, I was trying to figure out in my mind everything I needed to do, formulate a plan of what I was going to do.
.
This ended up being my plan... put it off. I had been putting off the idea of getting breast cancer from day one. I was in 7th grade in Mrs. Armstrong's class at Hines Middle School, VA. Mrs. Armstrong wore a wig everyday. Later she became a great help to my mother and to me, speaking with my mom on the phone and making sure that I had friends to surround me.
l
In the evening of my mother's diagnosis, mom and dad gathered us around them. They sat on the couch and I remember sitting in front of them on the floor of our modest home in Newport News, VA. I vaguely remember them telling us and we were all crying. I wonder if my younger siblings knew what they were upset about. My soul was shouting in protest, "No!, Not my mother!" Was she going to die? Would she be in a lot of pain? What would our lives be like now?
.
Mom was amazing. Mom is still amazing. She is strength. We never really saw her sick or sad or knew when she was visiting the doctor for treatment. She made it so that our lives weren't really disrupted. She took us to piano, sports, scouts, church. She was even better than just amazing. I remember she played on the church women's basketball team, running down the court with her hands up holding down her wig that was held on by a sweatband. She was funny and made everyone comfortable. Mom was the stake young women's camp leader one year...she would walk greet us each morning at Sunrise Service with singing, chanting and her turban upon her head. One ward even did a skit where our friend Jessica wore a towel around her head acting like my mom as camp leader. Mom was great!
.
I had my first child when I was 30. Dan had just finished grad school and was working now so I could stay home with our children. Would we have started having children earlier in our marriage if we had known about BRCA2? I think so. Two years ago I went to consult with an oncological gyn who suggested that it would be fine to go ahead with another pregnancy but that afterwards I needed to seriously consider getting the prophylactic hysterectomy/oophrectomy. He said he couldn't guarantee that I didn't get cancer before that, but he felt comfortable with that suggestion. We are so grateful for the little people in our lives. Now four months after the birth of our fourth child I am pulling my head out of the sand and starting the battle. January brought with it the new year's resolution of taking care of myself. The hefty sum that we deposited into this year's health savings account helped motivate me forward. I've had a long time to ponder on what I am going to do next. Even though I wonder sometimes about the extremity of the situation, I feel that I'm doing the right thing, the most logical action.
.
Here we go...

Wednesday, January 18, 2012

Jako Pisek Translation

I served a mission in the Czech Republic for 19 months as a representative for The Church of Jesus Christ of Latter-day Saints. "Jako Pisek" is one of my favorite Czech folk style songs. When I was trying to think of what to name this blog, the song came to me quickly. "Like Sand" is a song about overcoming difficulties. "I'm not one of those who doesn't get back up after a heavy blow..." sums it up. You should push play on the audio video on my blog sidebar. It's a lovely song. Here is a rough translation (Google Translate...but I'll finish the translation soon):

"Like Sand" by Nezmaři

As the sand between my toes přesíváš,
as they remain empty hands,
nepřeliješ sieve or water,
Sometimes very few want to,
I am not of those who don't get up after a heavy blow
nepřeliješ sieve or water,
Sometimes very few want to,
I am not of those who don't get up after a heavy blow...
.
Firm will also neoplýváš too,
seems to take me seriously nemíníš.
How much time we still meet or is all gone,
and what actually we are still racing?
How much time we still meet or is all gone,
and what actually we are still racing?
.
As a stone suddenly you're standing in my way,
I know that many things difficult to bypass,
Rather, try somewhere a different story,
which will have a better end,
But now I can say that I nescházíš.
Rather try somewhere different story,
which will have a better end,
But now I can say that I nescházíš.

As the sand between my toes přesíváš,
as they remain empty hands,
nepřeliješ sieve or water,
Sometimes very few want to.
I am not of those you don't get up after a heavy blow ...