We were scheduled to revisit MD Anderson on July 7th and 8th for test results. Sarah and Sean accompanied me and the emotionally long journey began. On July 7th we had appointments scheduled back to back starting at 9:30 in the morning. Our first appointment was a nutritional consult because I was interested in doing a treatment called Gerson therapy and changing to a vegtable based diet(new way of basically saying vegetarian). People should check out the Gerson Therapy book, and the Gerson Miracle documentary, oh and Food Inc. documentary and Food Matters documentary. Anyway, the nutritonal consult really just validated what I was doing dietary wise and we just reviewed ways to get enough protein without dairy or eggs, I am almost going vegan but I am willing to eat some organic eggs, cheese, and fish infrequently.
Our second appointment was with the fertility specialist. I was optimistic and excited. And those feelings were quickly replaced with reality. I asked the doctor to be honest, open, and blunt, because that is how I am and I expect that in return. And honestly I have been on her side of healthcare and I know the game, so lets not even go there.
Her conclusion after reading my test results was this. That I could harvest eggs and have a gestational carrier for a baby. However, it would need to be Sean's decision because he would be a single parent, due to the fact that there is an extremely slim chance that I would ever see that child out of it's toddler years.
At this point, I am pretty sure Sean's mind imploded and Sarah was silently crying, I had tears, but,in true Ashley fashion, I continued on with direct questioning and writing things down in my overly organized self made notebook.
I asked the doctor what she felt my prognosis was and she start with the statement,"well I don't have a crystal ball". I promptly stopped her and said I have worked hospice for six years and I know that game, we are not playing it. I told her I have had hundreds of patients ask me specifically, as a social worker, what I thought their prognosis would be and out of respect for them and their loved one I felt that it was my responsibility to be honest and open with them because they had enough fucking courage to ask. So don't give me a crystal ball bullshit lady. What I would tell my patients as a hospice social worker was that if their disease continued at the rate it has in the previous 3-6 months then they could expect "xyz". I told the doctor she knew this and that is what I needed her to tell us.
She then gave us the truth, if things continue at this rate I would have 1-2 years and if they could get containment on this it would be "great" to have 5 years.
Wow, what do you do with that. I want you to ask yourself. What would you do. What do Sean and I do. We are a young couple that just wants a normal life and now we will be grateful to have 5 years together. How would you live each day? It is the question we are now faced with. How do you not feel sadness everytime you look at each other or wake up together, but still try to feel gratitude for another moment together? How do you not wonder how many more days will I be able to get out of be without assistance. How do you not think about your own death and the sadness you feel for your partner, family, and friends? How do you not think about the level of unfairness for your partner to be a childless widow at the age of 37 years old. How do you not say FUCK YOU GOD! Just some questions that are going on in my head right now.
So the appointment continues with the fertility doctor discussing the treatment plan. She suggests an anti-estrogen pill called Tamoxifen to assist in the containment of the cancer. I look at her and bluntly say the following. Tamoxifen is a 50 year old drug that was invented for postmenopausal women. I am sitting in the best research/educational institute in the world for breast cancer and there are billions of dollars going into breast cancer research each year and that is all you got for me. And further more there are AIDS patients living for decades now and you all can't figure out a fucking breast cancer cell, and the best drug you have for me right now is 50 years old....you haven't come up with something bigger, better, and newer since then. What in fucks name have they been doing? The doctor sat there for a moment and said, "well I can see that you have educated yourself (no shit lady, this my body and my life you better bet your perfectly non-cancerous breasts I have researched the shit out of this b/c clearly no one knows what the fuck is going on), but please don't underestimate the power of Tamoxifen, that is why is has been around for so long.
I then said to her, why has no one mentioned removing my ovaries if estrogen is such a problem. Don't get me wrong it is not like I want to continue amputating pieces of my body off, but common sense would say why not remove the problem, is it b/c they can make more $$$ by making me take a pill for the rest of my life. Her response was that if they remove my ovaries too soon then my body could potentially make estrogen in other places. Too early???? Do you hear yourself lady? You just told me I have 1-2 years and 5 years would be amazing, at what point does removing my ovaries become too early....pretty sure that timeframe was approximately 10 years ago....come on....what the fuck, really. This is the best we got!!!! It is no longer about a pink fucking ribbon for me people it is about the reality of what our healthcare system fails to do for us everyday and the scars physically and emotionally they leave.
Oh but, wait this is just my second appointment of the day I still have 3 more, and it keeps getting better and better.
So that appointment ended and Sean was too overwhelmed to hear any more. So he sat by the beautiful waterfall outside and got some fresh air. Sarah and I proceed to meet with Dr. Murray the oncologist. He was running late so we waited patiently, not out of kindness, but b/c Sarah and I were mostly in shock and couldn't speak and had a million and one things running through our minds. I tried to laugh at the situation by thinking of things I will do with my 401K....it was really not funny...but I was refusing to allow my true feelings to show themselves, which I continued throughout the weekend(note to self: not a good idea, don't keep the emotions inside).
So Dr. Murray arrives and quickly explains his treatment plan. Here is the next shocking part. The cancer has spread to my liver within the past month. I have a 1.3 cm mass on my liver at this point. He was in agreement with the prognosis that the fertility doctor had just given us. The cancer that was previously found in my bones appears to not be growing right now, however, there have been some new spots found. There are now spots in both femurs and skull.
There plan is to start an anti-estrogen pill and a bone strengthening shot for 3 weeks see if there is any containment, if not we will remove my ovaries(my choice/suggestion) and try the next anti-estrogen pill for another 3 weeks. If after this there is no containment we will consider chemotherapy. There was brief mention of possible non-invasive laproscopic surgery for laser obliteration of the liver mass. After I researched this more, it is not a question, they will have to give me a good god damn reason why we would not do this.
My next appointment was with the Integrative Medicine doctor, which I was excited for because they are attempting to integrate holistic medicine with conventional treatment, which is my cup of voodoo/witchcraft tea...just kidding Carol. He was very nice and comprehensive with his assessment. He agrees with my choice for vegetarian/vegan diet with occassional organic cheese, eggs, and fish. Unfortunately, he felt that chinese herbal medicine would not be effective for me at this time b/c it has the potential to produce estrogen in my body. He did confirm I have a severe case of neuropathy in my feet and recommended accupuncture, which I received while I was there. I plan on continuing the accupuncture here b/c the neuropathy is debilitating many days of the week for me, walking is extremely painful. He also recommended, as did all the other doctors that I have palliative radiation to my spine to assist with this pain. He also recommended for me to have a palliative care doctor follow my case in Kansas City, at that point it was a bit shocking b/c he was sugar coating the fact that I should have a palliative care doctor on board so when I need hospice it would be an easy transistion....I am not at that point yet. I have faith in my KC doctors to manage my pain at this point...call it denial or whatever....I am not ready for palliative doctor yet.
Just a note. I had to advocate very hard for me to receive an appointment with the fertility specialist and the integrative medicine doctor. I should have to say it once, not repeatedly and not give a reason why I want to see them. I have insurance, and I am an educated woman who knows what she wants so fucking do it, my god. It is frustrating. And what about those who don't know how to advocate for themselves or educate themselves. Or the generations or people who think that "white coats" mean they know everything....I am here to remind you all....fuck that...they don't know everything....find your voice and use it to advocate for yourself or someone you love! The fertility specialist said to me you know one of the first signs of lobular breast cancer is abdominal weight gain....I said well isn't that funny b/c while training for a triathlon that is how I knew something was wrong with my body and for 2 years I went from doctor to doctor telling them something was wrong, and they all made me feel like I was the crazy one.....now who's crazy...thanks again healthcare system!!!
So the trip to MD Anderson and the recent prognosis is emotionally exhausting. It was as if each appointment was repeated punches in the stomach. We are in a state of shock right now and greiveing. We are also dealing with a completely shot AC unit and living with Sean's parents while we try to figure out how to replace the unit. Our wedding venue is closed and now saying that they are unsure if they have enough money to return our deposit, so the wedding will not be happening until the spring now. And I will have to schedule a surgery soon to replace my leaking breast expander. So if God could give us a break sometime soon we would appreciate it. I dream of the day that I can update the damn blog with good fucking news!
I know everyone's initial
Wednesday, July 13, 2011
First trip to MD Anderson
We were at MD Anderson from June 16-21. The oncologist wanted testing done there in order to compare what had been done here in Kansas City. Let me just say that MD Anderson is literally city blocks of a hospital. I was so excited to be apart of such an institution and was so hopeful to have some great care. The hospital is a well oiled machine, they know where you are at and what you are doing at all times. I was scheduled for things all day each day I was there b/c they understood I was an out of state patient that needed to make the most of my time while I was there. I have a whole team assigned to me from oncologist to social worker to even a patient advocate. They did their testing a bit different down there but for the most part they did the same as Kansas City.
I was anxious to meet the oncologist Dr Murray down there, I was just hopeful that we would click and that he would hear me as a 31yo young woman seeking answers and not medical record number 884464. That was my only issue with MD, was that you were asked you medical record number before your name, Sean jokingly said all the patients should just wear jail jumpsuits with our medical record across the front.
I meditated for days prior to our visit to MD, on various subjects, but one was most prevalent. I was meditating on that Dr. Murry would "hear me" as a patient and understand that I want to explore all options conventional and alternative to cancer treatment.
When I met Dr Murray for the first moment I felt like there was a bit of disconnect and that made me a bit worried. He appeared to be a very smart "research" kind of doctor, but that is not what I needed him to understand right now, I am not just another protocol I am Ashley Carol Bilbrey who needed to be HEALED. So as he spoke rapidly with a closed off energy I nodded and listened but then began to meditate and ask that he HEAR me. His assessment and verbal recall of beneficial medications and protocols continued. I told him that I wanted him to discuss fertility with me regardless if I were stage IV or not. I know that for someone with a 5-10 year life expectancy stamped on their life that they should be grieving that, but I was more focused on my ability to harvest eggs and have a gestational carrier. Dr. Murray stated bluntly, as I had asked him to do, that children should be put on the back burner. I was still meditating and asking him to hear me and he continued with a disconnected energy. Then 15 mins into the appointment all of the sudden you could feel the disconnection dissipate and he looked in my eyes rolled his chair up to my face, grabbed my hand and out of no where stated,"I hear you." He then really listened. He agreed to schedule an appointment with the fertility specialist. He hugged me at the end of the appointment, and as he walked out my mom looked at me and said,"What did you do to him?" Sometimes I think she thinks my energy work and meditation could be on the edge of voodoo or something....lol! As my energy healer/spiritual teacher Shani says, "we are all one, I am you, you are me, and we are God", we just have to stop and be open and listen.
His plan as far as the breast cancer with bone mets is to attempt anti-estrogen medications first before chemotherapy. He wanted me to complete testing at MD, they would read the results and then I would return the first of July to determine at treatment plan.
During this time, as if our lives were not filled with enough chaos, our wedding venue called me to inform me that the event space no longer meets city code requirements and that they are trying to decide if the space will be available for our Sept. 17th wedding. Awesome!!!!
Oh and the other amazing occurrence, I hope you sense my sarcasim, is that my left breast expander is deflating despite the saline fills, so I have a right breast that is filling fine and you can actually begin to see it when wearing clothing, and I don't look like a lesbian so much.....still a little bit b/c my hair is way short but not short enough for people to understand that it is growing back and that I didn't cut it this way, but now I only have one breast and a flat left chest. Nothing against lesbians...you know I love a gay....I am just saying that is what is happening to me right now. LOL. So I have an appointment with plastic surgeon anyway to get a fill and we will see what he says.
Oh and right before we left for Houston, our air conditioning unit is on the outs, we may be needing a whole new unit. Really, really....what have we done. We are good people, we try our best, could we please get a fucking ease card somewhere!!!!
I was anxious to meet the oncologist Dr Murray down there, I was just hopeful that we would click and that he would hear me as a 31yo young woman seeking answers and not medical record number 884464. That was my only issue with MD, was that you were asked you medical record number before your name, Sean jokingly said all the patients should just wear jail jumpsuits with our medical record across the front.
I meditated for days prior to our visit to MD, on various subjects, but one was most prevalent. I was meditating on that Dr. Murry would "hear me" as a patient and understand that I want to explore all options conventional and alternative to cancer treatment.
When I met Dr Murray for the first moment I felt like there was a bit of disconnect and that made me a bit worried. He appeared to be a very smart "research" kind of doctor, but that is not what I needed him to understand right now, I am not just another protocol I am Ashley Carol Bilbrey who needed to be HEALED. So as he spoke rapidly with a closed off energy I nodded and listened but then began to meditate and ask that he HEAR me. His assessment and verbal recall of beneficial medications and protocols continued. I told him that I wanted him to discuss fertility with me regardless if I were stage IV or not. I know that for someone with a 5-10 year life expectancy stamped on their life that they should be grieving that, but I was more focused on my ability to harvest eggs and have a gestational carrier. Dr. Murray stated bluntly, as I had asked him to do, that children should be put on the back burner. I was still meditating and asking him to hear me and he continued with a disconnected energy. Then 15 mins into the appointment all of the sudden you could feel the disconnection dissipate and he looked in my eyes rolled his chair up to my face, grabbed my hand and out of no where stated,"I hear you." He then really listened. He agreed to schedule an appointment with the fertility specialist. He hugged me at the end of the appointment, and as he walked out my mom looked at me and said,"What did you do to him?" Sometimes I think she thinks my energy work and meditation could be on the edge of voodoo or something....lol! As my energy healer/spiritual teacher Shani says, "we are all one, I am you, you are me, and we are God", we just have to stop and be open and listen.
His plan as far as the breast cancer with bone mets is to attempt anti-estrogen medications first before chemotherapy. He wanted me to complete testing at MD, they would read the results and then I would return the first of July to determine at treatment plan.
During this time, as if our lives were not filled with enough chaos, our wedding venue called me to inform me that the event space no longer meets city code requirements and that they are trying to decide if the space will be available for our Sept. 17th wedding. Awesome!!!!
Oh and the other amazing occurrence, I hope you sense my sarcasim, is that my left breast expander is deflating despite the saline fills, so I have a right breast that is filling fine and you can actually begin to see it when wearing clothing, and I don't look like a lesbian so much.....still a little bit b/c my hair is way short but not short enough for people to understand that it is growing back and that I didn't cut it this way, but now I only have one breast and a flat left chest. Nothing against lesbians...you know I love a gay....I am just saying that is what is happening to me right now. LOL. So I have an appointment with plastic surgeon anyway to get a fill and we will see what he says.
Oh and right before we left for Houston, our air conditioning unit is on the outs, we may be needing a whole new unit. Really, really....what have we done. We are good people, we try our best, could we please get a fucking ease card somewhere!!!!
Juen 8th Bone Biopsy
Well the bone biopsy was the most flawless of all my procedures so far. I contribute that to my peaceful state of mind, my energy healer Shani Enns, and my physicians who actually listened to my needs. However, the bone biopsy results revealed that the cancer in my bones is breast cancer cells that are estrogen and progesterone positive (ER/PR +) (HER 2 -). Not exactly what I wanted to hear. This cancer is being very aggressive and no one is clear on why this is happening to a 31yo. So I began packing my bags and all my medical records and actual pathology lab slides for my first trip to MD Anderson. Surely, the best research/educational hospital in the world for breast cancer will have some answers for me. It is a 12 hour drive with much anticipation packed with our luggage, fears, and hopes.
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