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!!!!
