Wow, I cannot believe that it has been so long since I have blogged. I think that the blog served a significant purpose for myself and extended family/friends for different reasons. Clearly, I began the blog to keep everyone informed of the happenings with the cancer. However, I found that the blog became a place for me to purge many of my feelings and ideas as such a surreal and traumatic event was unfolding in our lives.
I will try to fill in the enormous gap from where I left off to where I am now. Who knows, maybe I need to blog again in order to purge some underlying feelings. I will try to be more attentive to posting.
After reading several of my latest posts I could definitely sense the intensity, fear, and courage regarding the unknown path I was about to travel. The physicians predicted that it would be amazing if I survived 5 years. Well, as of today I have survived almost 2 1/2 years! Believe me when I say,"everyday is a battle"! I have an amazing husband, the unwavering love from my mother, supportive sisters, and beautifully fun and supportive girlfriends. My sister and her husband Donald have even moved to KC area to assist in helping me when I need it. My in- laws are beyond the title of in-laws they are my family. Sean's parents are so supportive in helping us wherever they can. Ryan my BIL sends me supportive messages all the time. Sean's dad has taken me to so many dr. appts that the staff just think he is my dad. and I don't bother correcting them b/c he is just like a dad to me! And there have been people in my life that I thought would be supportive and helpful but over the past years they have shown their true colors. I am not mad at them, I just have taken note of their actions and in return have been more guarded with my feelings with them.
I really don't even know where to begin, in order to catch everyone up on this journey. It may be difficult for me to remember in exact chronological order of the events, but I will try my hardest.
After meeting with all of the physicians at MD Anderson, the treatment plan for me there would be the same as the treatment plan at KU Hospital. It made us feel very comfortable that the KU physicians were just as good as MD Anderson, even in MD Anderson's mind. We returned to KC and began treatment here at home. Oh, and don't forget that our wedding venue had closed and refusing to give our deposit back, even though we had no fault in the cancellation of our wedding. So I was scrambling to locate another venue,which was nearly impossible even if we moved it into the Spring of 2012. The whole matter went to court, we got a partial amount of money back, but still no venue.
It was a blessing in disguise b/c at the time I did not know that I would be in the middle of radiation therapy during the spring 2012. The tumors on my spine were growing and hurting fairly rapidly. I went back to Dr. Coster as recommended by Dr. Rabe for palliative radiation, meaning radiation therapy for my spine, not to cure it, but to shrink it enough for me to be more comfortable. I also had reconstruction surgery again on my left breast because the implant of leaking.
The breast reconstruction was not as painful as I thought it would be. Every 2 weeks I would have saline injections into my implants in order to stretch the skin on my chest to allow the implants to have space enough to fit. The mastectomy was by far the most difficult surgery, as you can read in earlier posts.
The palliative radiation to my spine was also very difficult. I had 14 consecutive days of radiation. The radiation burned my esophagus and my upper stomach to a point where I could not eat or drink without using this special medication that numbed everything. Nothing tasted good, I slept for hours on end, and even when I was awake I had zero energy. The good news was that the tumors shrank slightly to give me some comfort.
During this time Sean and I decided we would shoot for November 2012 for our wedding and reception. So I could put the planning on hold for a bit.
Also, during this time I felt that my current oncologist Dr. Rabe was not the right fit for me any longer. She is a great doctor, however, I felt that my current situation was just out of her scope of practice and I needed to explore for an oncologist that had more experience with difficult cancer that did not play the regular game. So I began my search for a new oncologist.
Here is another example where I had to take my health and needs into my own hands and find the professionals I needed to receive the best chance I could have. I found a physician at KU who was head of clinical trials board and had been in breast oncology for many years. I made and appointment with Dr. Khan and went in with my Team Ashley girls and tons of questions to see if he would fit the position I was looking for. On the intake paperwork, there was a question asking why I was seeking a physician. My response was, "I'm interviewing physicians for oncology care". Dr. Khan met with us in a conference room, and answered every question to my expected standard. At the end of the appointment it was clear to me that I had found my new oncologist, I didn't let him quite know that yet though b/c I had other "interviews" to conduct. As Dr Khan was escorting us out of the conference room he paused and looked at me and said,"why did you put on your intake paperwork that you were interviewing for a new physician"? I told him, this is my life, I expect certain communication and protocols in my care in order for me to have the best chance in making it the next 5 years. He chuckled and said, "well, maybe this should have been an interview for me as well." I agreed with him and told him that if he didn't feel comfortable with what I was asking for then, yes this should be him interviewing me as well. He smiled and said he would have no problem with taking care of me. The things that appealed to me were that he LISTENED to all I had to say, and then would respond with an intervention. And the other thing was that he was positive, in a realistic manner. And he had several interventions to recommend with each problem I would present to him.
That Fall, it was determined that it would be in my best interest to remove my ovaries. Clearly, this was the final decision for Sean and I regarding our ability to have our own biological children, We scrambled for a test that had to be sent to Mayo Clinic to determine if my ovaries had any viable eggs left after chemo and radiation. However, the test results didn't return quickly enough for us to wait to have the surgery. So Sean and I had to decide what to do without even knowing if there was a chance. I wish no couple has to make such a decision. It was so sad. I have always wanted to be a mother, and Sean would be an amazing father. This decision would be life changing. How many more difficult situations would be given to us!!! The surgery was scheduled, Mayo Clinic had not returned results, Sean and I had to decide. We decided that we would remove my ovaries b/c we didn't want to chance the cancer to spread further and we knew that we could adopt no matter what. This decision was such a heavy feeling, so sad, surreal, unfair, and heartbreaking. I felt like I was not a woman in some ways, I would be broken goods, unable to give my husband a child. In my mind I was more sad for Sean, it was so unfair, he didn't choose this, I am sure he wanted his own biological children. He would always hold me as I cried and said that he would rather have me for many more years than chance having a child. It continues to hurt me today when I think about not having a baby. Sometimes it is too hard to be around new parents and newborn babies, I just have to walk away sometimes. Well, as fate would have it, the day of the surgery, after Sean and I had made the decision to remove the ovaries, Mayo Clinic provided the test results.....my ovaries were nonviable, so the decision would have been made for us ultimately anyway. This was yet another experience that Sean and I would go through and only make our relationship stronger.
Since being diagnosed I have had PET/CT scans every 3 months. During the 2012 year the results would be mixed at times and I would be changed to various chemotherapies. The liver tumors grew and spread to a point where there were so many you couldn't count. The bone cancer was maintained for the most part, but continues to remain in all the bones as originally found.
I had a pain pump placed inside my abdomen that has a catheter that runs under my skin around to my spine and floats in my spinal fluid and is stitched in place to give me pain medication 24/7 and I have, what I call an "easy button" that I can give myself increased medication as needed. My bone pain, spinal pain, and neuropathy in my feet are the reasons the pump was placed. I was having to take too many pain meds orally, so we placed the pump. We thought it would also help with my pharmacy bill, but that is not really the case. I take so many meds for the side effects of the chemo and plenty of medication for my psychological needs that our house income is greatly effected.
Our daily life is effected everyday by the cancer, Sean worries about me constantly. He has been such an angel as he anticipates my needs and without question takes excellent care of me. I spend most of my time.in bed or resting b/c activity is too much for my bones. I am considered completely disabled and I hate to admit it but I use my wheelchair more and more. Some days it is just too much emotionally. Being "sick" everyday really takes a toll on EVERYONE! I try to meditate and use positive affirmations, but some days are just too much. I know that everyone close to me has the same days from time to time, we all hide our tears at times, sometimes tears come out in anger, or frustration. I try to remember that we are all human and these emotions are part of the human experience but they can still be daunting.
Some days I think about all the people that know me or not and they pray for me. I think that prayer, meditation, or whatever someone can put out there for me is making a difference. I meditate over my medications for them to heal me and I meditate for peace. These words are being heard because I have been fighting cancer for almost 3 years and I plan on fighting past that miraculous 5 year mark. With that said, thank you seems insufficient, but thank you for all of those who put positive energy out there for me, I have gratitude everyday that I wake!
Next post will include our wedding that was AMAZING!!!!
Tuesday, June 11, 2013
Wednesday, July 13, 2011
The results are in
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
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
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.
Friday, June 3, 2011
What has happened this week
Tuesday MD Anderson in Houston called me, I have a case manager assigned to my case already. We discussed what I needed to have sent to them via fax and what I needed to bring in my hands to my first appointment. They were willing to try to get me down there to see a doctor the week of June 6th, but then I informed them that I have a bone biopsy here in the works, but I could cancel that and come down there for the biopsy if that is what they felt would be most beneficial. They told me to have the bone biopsy done here in KC first, since it was already in the works. So, Tuesday, Wednesday, and Thursday I was on the phone or at doctor's appointments from 8:00-5:00, non-stop on the phone coordination in between appointments. I was so mentally and physically exhausted I hurt everywhere. I ached all over and could even feel my breast expanders ache under my skin with breath. Lately, hot salt baths, relaxing music, meditation, and hot lavender tea have been my comfort. Well my therapist, meds and amazing support system(you know who you are) helps a ton too! I have been successful with meditation recently and I describe it like this. I just have a "knowing" about certain things these days, I am more centered, and maybe because my physical body is weakening this allows my spiritual body to be more sensitive and allows me to be more open and to hear what I need to. I have a knowing that MD Anderson is where I need to be, I told Sean, it is not a knowing that they have a cure for me but it is a knowing that something good/positive awaits me there. Sean had 3 different stories told to him this week about women in my particular scenario and MD Anderson has been able to put them in remission! Houston, here we come!
Things are falling into place for us to go to Houston. I met with the doctor who would be doing my bone biopsy yesterday, I really liked him. However, some of the things we talked about really brings the severity of my case into my face. He said that I had plenty of options for biopsy sites, which I asked for clarification on. He said I have 3-4 ribs with enough cancer in them for biopsy, also enough in vertebra 8-11 and then 1-2 vertebra a little lower, some on my left shoulder blade, and some on the tip of my right pelvic/hip bone. So hearing all of those "significant" sites was sad, and didn't even mention the smaller areas. The doctor has elected to take the biopsy from my 11th vertebra. He explained he will use a large needle and hit it with a hammer to get it into my bone. Awesome. I said what is the probability that you get into my spinal cord or weaken the vertebra to a point that I have back problems or some other issue. He said the probability was extremely small and my body should be able to heal itself. He said that b/c I was young my bone would most likely fill itself back in, but in some elderly patients that he has had and a fracture occurred they are able to go back in and fill the fracture with a bone like cement. Awesome. So I am scheduled for this procedure on Wed June 8th @ 8:00.
I spoke with MD Anderson this morning and they said that they would most likely call me by the end of today and schedule my appointment with them for Monday June 13th. That's all I have for now! Much love & In Celebration! Ash
Things are falling into place for us to go to Houston. I met with the doctor who would be doing my bone biopsy yesterday, I really liked him. However, some of the things we talked about really brings the severity of my case into my face. He said that I had plenty of options for biopsy sites, which I asked for clarification on. He said I have 3-4 ribs with enough cancer in them for biopsy, also enough in vertebra 8-11 and then 1-2 vertebra a little lower, some on my left shoulder blade, and some on the tip of my right pelvic/hip bone. So hearing all of those "significant" sites was sad, and didn't even mention the smaller areas. The doctor has elected to take the biopsy from my 11th vertebra. He explained he will use a large needle and hit it with a hammer to get it into my bone. Awesome. I said what is the probability that you get into my spinal cord or weaken the vertebra to a point that I have back problems or some other issue. He said the probability was extremely small and my body should be able to heal itself. He said that b/c I was young my bone would most likely fill itself back in, but in some elderly patients that he has had and a fracture occurred they are able to go back in and fill the fracture with a bone like cement. Awesome. So I am scheduled for this procedure on Wed June 8th @ 8:00.
I spoke with MD Anderson this morning and they said that they would most likely call me by the end of today and schedule my appointment with them for Monday June 13th. That's all I have for now! Much love & In Celebration! Ash
Sunday, May 29, 2011
This will probably take your breath away
What I am about to post is really difficult. I know that everyone loves us and will want to call, come see us, and message us, but Sean and I are trying to gather ourselves and we need some time. Please feel free to facebook private message us or text message us, but if we don't get back immediately, please understand. Each time we have to retell this story we grieve it, so that is the beauty of this blog. Because we love you all so much and we want you to be informed, here it is.
I had a CT scan on May 18th, because I asked for it soon after I had my mastectomy follow up appointment with my oncologist. We had done a CT scan and bone scan in December 2010 prior to chemo so we could have a before and after picture to ensure the chemo worked. If you remember the December results confirmed the mass in my breast, lymph nodes, and scattered cancer cells in my abdomen and a 1 cm growth on my adrenal gland.
I went into the CT scan on Wednesday May 18th and upon leaving the nurse stated that they would call me within 24-48 hours. On my way home I was talking to my friend Shelly and I said jokingly,"oh I probably won't hear anything until Monday." However, something inside of me was telling me I was wrong. There were other things that I was feeling too but I didn't want to believe, I will get to that in a minute.
I get home and within 2 hours the nurse calls me. My heart dropped when I saw Dr.Rabe's name on my caller id. I knew this was not good. How did I make the 2 hour call back list, I want to be on the 48 hour call list...you know the call back that has nothing significant to report...you know you are fucked if they call you back in 2 hours. I answer the phone and the nurse states that the doctor has read my scan and has found something "suspicious" and is wanting to schedule a PET scan, which is basically a high definition scan they use to find cancer throughout the body. The nurse told me not to worry too much, it could be nothing. Really, really, don't worry, come on! The nurse hesitated when I asked her where the "suspicious" situation was in my body and she hesitated and said....well....."in your back". First of all I didn't like her hesitation and no one ever needs to draw out the word well or use the word "suspicious". The word "suspicious" means nothing ever...think about it. The nurse stated that the scheduling team would be contacting me with the first appointment available, again if it is nothing why is everyone rushing around. I got off the phone sat on my couch and had a good cry. It's not the cancer that is killing me, it's these damn bad phone calls. I am tired of this, I don't want to be in this club. As I sat on my couch and I cried I had that feeling, like I was talking about earlier, and I said to myself, worst case scenario is that it is in my bones.
I was scheduled to have my PET scan on Thurs. May 26th at 11:30 and results read with the doctor at 3:30 the same day. As I laid in the scanner that morning I already knew what was coming. Call it God, call it the universe, call it my own intuition, I just knew.
Here is the bad part, Sean had gone to Hawaii on the 18th for a friend's wedding that I was suppose to be going to as well but earlier in the year the doctors had said I shouldn't go b/c I might have a compromised immune system at that time. The night before Sean left, he said to me that he felt bad going without me(but we had already committed to share a house out there with the couple before I was even diagnosed) and he felt weird being away from me for such a long time. I reassured him, and meant it, that I would be fine, I wasn't even in any serious treatment right now and he needed to go to take a vacation from cancer. Though, in the almost 6 years we have been together this would be the longest we would be separated, that's either really cool or kind of weird...just kidding. So Sean was on a plane when I got the results. We had planned for him to meet me at the house after the appointment. My mom, and girlfriends Cora, Shelly, and Kressy attended the results appointment with me.
Dr. Rabe walked into the room and inquired where Sean was and why the room was filled with my girls. I explained the situation. She was direct and said she was glad I had brought extra support because what she was about to tell me was not good news. She directly said the cancer has spread to my bones, I am now stage 4. There is a mass on my spine covering vertebra 8-11, a mass on my rib, and widespread throughout the other bones in my body. She then says that she has seen women live up to 10 years with this.
So the doctor allowed us to ask many questions and it was extremely difficult for her to give us the news. I felt so sad for my mom, I can't imagine what she was feeling. I felt sad for my girlfriends too, and most importantly I was already preparing to drive home and tell my husband there is a potential that he may be a childless widow by the age of 40.
The next day I had an appointment with my radiation oncologist,who is from Mayo Clinic, and Sean and I went to get his opinion of my scan. I was sure that he would say that I should go to Mayo Clinic, however, he said because the type of cancer I have and the aggressive nature it is moving without a doubt he would tell me to go to MD Anderson in Houston. Again, before he confirmed that for us, I "had that feeling" or that voice telling me that I need to go to Houston. He stated that this is the best academic hospital in the WORLD, for my type of cancer. He stated that most likely they will recommend chemo treatment. He also said that this our golden ticket. That we have to get this combination of chemo drugs right this second round because the likelihood that a 3rd or 4th round working would be severely diminished. He also explained that the cancer in IN my bones versus ON my bones which is a good thing. He explained that this would be more treatable with chemotherapy. He explained each case is different and prognosis varies, but my young age is a benefit, and another benefit is that the first rounds of chemo appear to have eliminated the scattered cells in my abdomen, remaining lymph nodes, and the adrenal glad. Sean and I said that we want the most aggressive treatment possible. I said bring me to the brink of death if you have to, just be able to bring me back.
So this is the plan Sean and I feel comfortable with at this point. We have already contacted MD Anderson in Houston and we are waiting for them to call back with scheduling most likely on Tuesday. Tuesday I have lab work to be done. Thursday I meet with a doctor here in KC who will be preforming a bone biopsy and within a few days of that consult I will have the bone biopsy. The consult is needed because we will need to determine which bone will be able to harvest to best bone sample with the least amount of damage. Apparently, with bone biopsies there can be plenty of complications/infections. The doctors are all hoping that the cancer in my bones is a different cancer from the cells that were in my breast. The doctors cannot understand why my cancer is so aggressive right now with only being 2 months out from chemo, this may have been more predictable if I were years out. Again, I am an atypical case! That's why we are going to MD Anderson.
I know this is not the news any of us wanted to hear, but it is what it is and we will deal accordingly. I will fight this because I love you all and life way too much! Sean and I are spending some much needed time together these last few days and will hopefully get our feet back underneath us soon. We love you all and thank you for your thoughts, prayers, and positive energy.
I had a CT scan on May 18th, because I asked for it soon after I had my mastectomy follow up appointment with my oncologist. We had done a CT scan and bone scan in December 2010 prior to chemo so we could have a before and after picture to ensure the chemo worked. If you remember the December results confirmed the mass in my breast, lymph nodes, and scattered cancer cells in my abdomen and a 1 cm growth on my adrenal gland.
I went into the CT scan on Wednesday May 18th and upon leaving the nurse stated that they would call me within 24-48 hours. On my way home I was talking to my friend Shelly and I said jokingly,"oh I probably won't hear anything until Monday." However, something inside of me was telling me I was wrong. There were other things that I was feeling too but I didn't want to believe, I will get to that in a minute.
I get home and within 2 hours the nurse calls me. My heart dropped when I saw Dr.Rabe's name on my caller id. I knew this was not good. How did I make the 2 hour call back list, I want to be on the 48 hour call list...you know the call back that has nothing significant to report...you know you are fucked if they call you back in 2 hours. I answer the phone and the nurse states that the doctor has read my scan and has found something "suspicious" and is wanting to schedule a PET scan, which is basically a high definition scan they use to find cancer throughout the body. The nurse told me not to worry too much, it could be nothing. Really, really, don't worry, come on! The nurse hesitated when I asked her where the "suspicious" situation was in my body and she hesitated and said....well....."in your back". First of all I didn't like her hesitation and no one ever needs to draw out the word well or use the word "suspicious". The word "suspicious" means nothing ever...think about it. The nurse stated that the scheduling team would be contacting me with the first appointment available, again if it is nothing why is everyone rushing around. I got off the phone sat on my couch and had a good cry. It's not the cancer that is killing me, it's these damn bad phone calls. I am tired of this, I don't want to be in this club. As I sat on my couch and I cried I had that feeling, like I was talking about earlier, and I said to myself, worst case scenario is that it is in my bones.
I was scheduled to have my PET scan on Thurs. May 26th at 11:30 and results read with the doctor at 3:30 the same day. As I laid in the scanner that morning I already knew what was coming. Call it God, call it the universe, call it my own intuition, I just knew.
Here is the bad part, Sean had gone to Hawaii on the 18th for a friend's wedding that I was suppose to be going to as well but earlier in the year the doctors had said I shouldn't go b/c I might have a compromised immune system at that time. The night before Sean left, he said to me that he felt bad going without me(but we had already committed to share a house out there with the couple before I was even diagnosed) and he felt weird being away from me for such a long time. I reassured him, and meant it, that I would be fine, I wasn't even in any serious treatment right now and he needed to go to take a vacation from cancer. Though, in the almost 6 years we have been together this would be the longest we would be separated, that's either really cool or kind of weird...just kidding. So Sean was on a plane when I got the results. We had planned for him to meet me at the house after the appointment. My mom, and girlfriends Cora, Shelly, and Kressy attended the results appointment with me.
Dr. Rabe walked into the room and inquired where Sean was and why the room was filled with my girls. I explained the situation. She was direct and said she was glad I had brought extra support because what she was about to tell me was not good news. She directly said the cancer has spread to my bones, I am now stage 4. There is a mass on my spine covering vertebra 8-11, a mass on my rib, and widespread throughout the other bones in my body. She then says that she has seen women live up to 10 years with this.
So the doctor allowed us to ask many questions and it was extremely difficult for her to give us the news. I felt so sad for my mom, I can't imagine what she was feeling. I felt sad for my girlfriends too, and most importantly I was already preparing to drive home and tell my husband there is a potential that he may be a childless widow by the age of 40.
The next day I had an appointment with my radiation oncologist,who is from Mayo Clinic, and Sean and I went to get his opinion of my scan. I was sure that he would say that I should go to Mayo Clinic, however, he said because the type of cancer I have and the aggressive nature it is moving without a doubt he would tell me to go to MD Anderson in Houston. Again, before he confirmed that for us, I "had that feeling" or that voice telling me that I need to go to Houston. He stated that this is the best academic hospital in the WORLD, for my type of cancer. He stated that most likely they will recommend chemo treatment. He also said that this our golden ticket. That we have to get this combination of chemo drugs right this second round because the likelihood that a 3rd or 4th round working would be severely diminished. He also explained that the cancer in IN my bones versus ON my bones which is a good thing. He explained that this would be more treatable with chemotherapy. He explained each case is different and prognosis varies, but my young age is a benefit, and another benefit is that the first rounds of chemo appear to have eliminated the scattered cells in my abdomen, remaining lymph nodes, and the adrenal glad. Sean and I said that we want the most aggressive treatment possible. I said bring me to the brink of death if you have to, just be able to bring me back.
So this is the plan Sean and I feel comfortable with at this point. We have already contacted MD Anderson in Houston and we are waiting for them to call back with scheduling most likely on Tuesday. Tuesday I have lab work to be done. Thursday I meet with a doctor here in KC who will be preforming a bone biopsy and within a few days of that consult I will have the bone biopsy. The consult is needed because we will need to determine which bone will be able to harvest to best bone sample with the least amount of damage. Apparently, with bone biopsies there can be plenty of complications/infections. The doctors are all hoping that the cancer in my bones is a different cancer from the cells that were in my breast. The doctors cannot understand why my cancer is so aggressive right now with only being 2 months out from chemo, this may have been more predictable if I were years out. Again, I am an atypical case! That's why we are going to MD Anderson.
I know this is not the news any of us wanted to hear, but it is what it is and we will deal accordingly. I will fight this because I love you all and life way too much! Sean and I are spending some much needed time together these last few days and will hopefully get our feet back underneath us soon. We love you all and thank you for your thoughts, prayers, and positive energy.
The news
When the mastectomy was preformed the surgeons are unable to tell how many lymph nodes were infected with the cancer. The surgeons could only tell me that the tumor in my breast was about 7 cm and that there are 3 levels of lymph nodes in the armpit which she could reach and she took out levels 1 and 2. It would be a couple of weeks before the pathology report indicated how far the cancer had spread into the lymph nodes. The surgeon was confident she had been able to remove all the breast tumor and lymph nodes.
I had a follow up appointment with the breast surgeon in order for her to monitor my wound healing. She informed us that 12 of the 14 lymph nodes removed were cancerous. She then gave us the news that my cancer is now a stage 3. We were in shock.
I know that it is just a number, but it is not the number we wanted to hear. I cried and grieved all weekend. The next week I had a follow up appointment with my oncologist as well. Fresh from a weekend of tears and grief I didn't go into the appointment with a smile on my face. I was tearful and distraught. My oncologist spoke sternly to me, which was out of character for her, and told me that I can't worry over things that I don't have control over and that if my mind is not in the right frame then my physical body will not heal. Really, really, does she know who she is talking to? I, of all patients, understand the benefits of mediation, balance, but don't forget I am in therapy for my anxiety and control issues. I left that appointment with Sean driving and I was crying. I said,"what the fuck do they want me to do? I see a psychiatrist, a psychologist, and I have a fucking workbook my therapist gave to help me with my anxiety/control issues. Do they forget that I am a 31 year old woman trying to fit cancer into her fucking planner!"
The next day I signed up for a yoga class for chronically ill patients, which makes me feel like the cream of the crop in society. There is an organization called Turning Point, that is for chronically ill patients and their co-survivors that provides many different types of classes for free. So I looked at several different classes and signed up for a few. I ended up really liking the yoga and the Jin Shin Juysitshu. So when I saw my therapist that week I told her about the stage 3 news and my odd appointment with my oncologist. My therapist reminded me that even healthcare professionals have difficulty with seeing a young person struggling and maybe my oncologist reacted this way b/c she was trying to manage her own emotions. Okay, whatever. No I am kidding. I get it. I also get, that the day I was diagnosed with cancer everyone in my life got diagnosed too and we all carry it around with us differently and we all grieve differently and at different times.
So my therapist then asks me how things are going with the Anxiety Workbook. I said do you want my honest answer...of course she does. I say,"I feel like a fucking idiot!" I don't think that is the response she expected to get. I explained to her that I have a master's degree in this, I counsel patients to do these skills in order to cope. I am pissed that I have this fucking workbook. She explained to me that when going through college I was able to always view "them" as patients and that I could never be one of "them", yet that is exactly what I am. Awesome, I am pretty sure she just labeled me as crazy. We spoke of other things that day and I said several curse words, and told her I felt like a fire has been ignited within me and I have found my voice. Her response,"I know you are going through an angry stage right now, and you have the right to do that, but just keep this in mind....don't leave slaughtered bodies behind you." If I were unsure if she had labeled me as crazy before, I am sure of it now! I'm kidding, I get it, and I told her I am assertive, I am not a total bitch that no one wants to be around and that will not be my intention, but I'm glad she brought it to my attention with those words.
badass self is draped across the exam table. There is a nurse on each side of me and they tell me they will pull drains now. Before they begin to pull I say,"Let's be honest here ladies, is this going to hurt, I don't care if it is, I just want to brace myself." Their response was no it won't hurt, it's just going to feel weird. My response,"Okay with that being said, I want you to recognize that you have not restrained my arms, so if this does hurt there is good probability that I will reach up and choke both of you and/or pull your hair." I was serious. I scared them...they made a nervous laugh! I win! It didn't really hurt.
I had a follow up appointment with the breast surgeon in order for her to monitor my wound healing. She informed us that 12 of the 14 lymph nodes removed were cancerous. She then gave us the news that my cancer is now a stage 3. We were in shock.
I know that it is just a number, but it is not the number we wanted to hear. I cried and grieved all weekend. The next week I had a follow up appointment with my oncologist as well. Fresh from a weekend of tears and grief I didn't go into the appointment with a smile on my face. I was tearful and distraught. My oncologist spoke sternly to me, which was out of character for her, and told me that I can't worry over things that I don't have control over and that if my mind is not in the right frame then my physical body will not heal. Really, really, does she know who she is talking to? I, of all patients, understand the benefits of mediation, balance, but don't forget I am in therapy for my anxiety and control issues. I left that appointment with Sean driving and I was crying. I said,"what the fuck do they want me to do? I see a psychiatrist, a psychologist, and I have a fucking workbook my therapist gave to help me with my anxiety/control issues. Do they forget that I am a 31 year old woman trying to fit cancer into her fucking planner!"
The next day I signed up for a yoga class for chronically ill patients, which makes me feel like the cream of the crop in society. There is an organization called Turning Point, that is for chronically ill patients and their co-survivors that provides many different types of classes for free. So I looked at several different classes and signed up for a few. I ended up really liking the yoga and the Jin Shin Juysitshu. So when I saw my therapist that week I told her about the stage 3 news and my odd appointment with my oncologist. My therapist reminded me that even healthcare professionals have difficulty with seeing a young person struggling and maybe my oncologist reacted this way b/c she was trying to manage her own emotions. Okay, whatever. No I am kidding. I get it. I also get, that the day I was diagnosed with cancer everyone in my life got diagnosed too and we all carry it around with us differently and we all grieve differently and at different times.
So my therapist then asks me how things are going with the Anxiety Workbook. I said do you want my honest answer...of course she does. I say,"I feel like a fucking idiot!" I don't think that is the response she expected to get. I explained to her that I have a master's degree in this, I counsel patients to do these skills in order to cope. I am pissed that I have this fucking workbook. She explained to me that when going through college I was able to always view "them" as patients and that I could never be one of "them", yet that is exactly what I am. Awesome, I am pretty sure she just labeled me as crazy. We spoke of other things that day and I said several curse words, and told her I felt like a fire has been ignited within me and I have found my voice. Her response,"I know you are going through an angry stage right now, and you have the right to do that, but just keep this in mind....don't leave slaughtered bodies behind you." If I were unsure if she had labeled me as crazy before, I am sure of it now! I'm kidding, I get it, and I told her I am assertive, I am not a total bitch that no one wants to be around and that will not be my intention, but I'm glad she brought it to my attention with those words.
badass self is draped across the exam table. There is a nurse on each side of me and they tell me they will pull drains now. Before they begin to pull I say,"Let's be honest here ladies, is this going to hurt, I don't care if it is, I just want to brace myself." Their response was no it won't hurt, it's just going to feel weird. My response,"Okay with that being said, I want you to recognize that you have not restrained my arms, so if this does hurt there is good probability that I will reach up and choke both of you and/or pull your hair." I was serious. I scared them...they made a nervous laugh! I win! It didn't really hurt.
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