My Journey… My Detour!

This last week has been very interesting to say the least.  Monday started off like a regular day. I had an appointment with my plastic surgeon. I have been getting my right breast expanded and ready for radiation. But since the bilateral mastectomy there was some concern about the skin on my left breast. There was no blood circulation to the skin and they were monitoring it. Monday the surgeon noticed that the skin was not healing and decided I need surgery that same day. I already had an appointment with my Oncologist Dr. M, as well as, an appointment for my 2nd hormone shot.  It seems like every month there will be some excitement surrounding these hormone shots. Maybe it’s a good distraction from the needle. I’m not sure. The appointment with my Oncologist went well. We talked about the pathology results of the surgery. Nothing new was discovered during the surgery. We also talked about “the plan”. The monthly shots are forcing my body into menopause and I will start taking hormone blockers.  All of that was great information to get since we had our appointment with Moffitt Cancer Center on Tuesday.

Monday around 6pm I was wheeled into surgery once again. All I could do was laugh as Richard and I made jokes about my boobs. I had the giant tumor on my right breast, which is doing fine. My left breast had the smaller tumors, but is the problem child.  My boobs are lopsided because they can’t expand my left breast until the skin heals and this surgery just prolonged the process,  but it is what it is.  Now I know why a lot of women choose to “go flat”. This is a lot of work. I am seeing my plastic surgeon twice a week and I still have a lot to go. I will have to wait 6 months after radiation to have reconstruction.

I wasn’t released from the hospital until 10:30pm on Monday night.  I had another drain sticking out of my body and back on antibiotics.  All of that excitement was not going to stop us from getting up early the next day to drive to Tampa for our second opinion. I can only speak for myself, because I can’t imagine what Richard was thinking or what he expected from this appointment at Moffitt. But we both liked Dr. K. She had all of my records and had time to think about the best course of action. At the end of it all she agreed with everything my Oncology Team at Memorial is doing. She also said that I was lucky that all of this happened the way it did. She admitted that if I would have been diagnosed Stage 4 back in August my story would be different. They would not have been aggressive with my treatment. I would have never had chemo or surgery. Richard and I just looked at each other and thanked God for my bone disease. It has truly been a blessing in disguise. Dr. K also agreed that I should definitely go for the clinical trial.

Thursday I had a follow- up appointment with my plastic surgeon, who told me that I had an “organism” growing on my skin. WHAT? How does that even happen. It’s a good thing they cut out that skin. Unfortunately, I have to keep the drain longer. It’s really not so bad the second time around, but it’s still weird having a tube coming out of your body. The good thing is that we were able to enjoy some quality time with Sebastian. My mom watched Leo so we could take Sebastian to a “Night of the Arts” event at his school. I think it was good for him to see that mommy is ok and he was able to show off some of his artwork. Thank you to all my prayer warriors and everyone that has reached out in regards to Sebastian. I am blessed to have some great people in my life. I have a college friend and a college professor who did some research and were able to put me in contact with a Child-Life Specialist  here in Florida, who reaffirmed that everything we have done thus far has been the right thing for Sebastian.  I think as we slowly get back to our regular life he will see me doing well and he will be just fine.

Friday we had an appointment with my Radiologist to talk about when we would be starting radiation. First, I will need some physical therapy so that I can lift my arm over my head. If I can’t get my arm up then I can’t have radiation. I have been doing some arm exercises a few times a day and I know Physical Therapy will help. I should be starting radiation in 2 weeks. I will need 5 1/2 weeks of radiation. That is about 28 sessions. It will be everyday, Monday through Friday for about 10 minutes. I have heard all kinds of stories about the side effects. Some patients have described it as a really bad sunburn. I have no more cancer in my breast. Radiation is a preventative and at this stage in the game I am up for anything that helps keep me around.

Richard and I both really like my Radiologist,  and after having a conversation with Dr. C, once again everything was reaffirmed that the stars were aligned and we had all the right doctors in our corner. I have an Oncologist who I trust and that is fighting for me, a Surgeon that preformed a mastectomy that no other surgeon would have because of my diagnosis and now we have a Radiologist that is heading up a clinical trail that could potentially cure me (put me in remission). Since my new diagnosis no one in the medical field has mentioned anything about a “cure”.  Everyone has said its terminal and something I have to live with for the rest of my life. It’s about controlling the spread of the cancer and making sure I am comfortable. This clinical trial with the cyber knife (radiation to my spine) could put me in remission, meaning there is no more cancer in my body.  Unfortunately, no one knows because there haven’t been any successful studies conducted for Stage 4 Metastatic Breast Cancer patients. That breaks my heart and it really lit a fire under my butt!  To know that there are other women out there like me left with no options or hope. All I can do now is pray that I get into the right group for this clinical trial. We WANT the cyber knife, especially if it means that it will kill the cancer in my spine. Because of my bone disease doctors have always tried to use me as a guinea pig. Sticking me and probing me trying to understand Ollier’s disease. I was not happy about any of it. But now I would gladly be a guinea pig if it means helping other women! I will bare that burden with pride.

Saturday we went to visit Richard’s family in West Palm Beach. Unfortunately, there was a death this week. His cousin’s boyfriend was killed in a motorcycle accident. He was only 24 years old and left behind a 3 year old little girl. That just reminded me how fragile life really is. We forget that tomorrow is not promised. I didn’t have to get Cancer to know that, but now I do wake up every morning feeling blessed. I thank God every morning for another day and I make the best out of every minute. People comment on how I am always smiling. Well, I make a choice every morning to make it a good day. Yes, I have my moments, but I choose to be happy.  I know there are people that have it worse then me. I have prayed for peace in my heart and God has given me that peace.

Today we went to church. I have such an amazing support system at Hollywood Hills. Everyone has been amazing. Praying for me and just showing us so much love. Pastor Larry gave me a shout out that made me laugh. This morning, during a worship song, I cried. I wasn’t sad. I was emotional. I was looking up at the alter and thinking to myself that a year from now I will be standing up there in front of the congregation giving my testimony. I am determined to tell people about my miracle. I am a strong believer that everything happens for a reason, and if God is using me to teach others then I will gladly be that vessel of faith and hope.