change in plans..

“We're not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be”

-C.S. Lewis

This entry has definitely been the hardest one for me to write thus far. I've been trying to gather my thoughts and process through what is going on enough to put it all into words, which is why it has taken me two weeks to report the most recent developments in my life. On one hand, the news I have to share is heavy, terrifying and sad. On the other hand, it is relieving, encouraging and emotionally freeing. The news came two weeks ago with my first visit with an oncologist at MD Anderson.

Up to this point, I had only been to see liver doctors and surgeons. My path through the next year seemed clear: Get on the transplant list, get a transplant, recover, and move on with my life! Although I had heard from many how intense the recovery process was with a transplant, I had already accepted this and was ready to take action. I was willing to go through the pain of recovery and ready to take immune system suppressing drugs for the rest of my life. I was prepared for this contingent on the fact that it was the only way I could get completely better.

When I met with Dr. Ravi for the first time, he asked me what I knew about my disease, EHE (for short). He then informed me that he almost never supported patients with my condition getting transplants. He wanted to make sure that I knew all the facts and statistics before I made my decision to go through with the transplant. This was the part I was not prepared for... Based on the cases in circulation on people with epithilioid hemangioendothelioma, 40-70% of people survive liver transplantation. Of those that survive, there is a 60% chance of living completely disease free. Patients also experience a decrease in quality of life post transplant and are at risk due to the suppression of their immune system required to keep the body from rejecting the transplanted organ.

Another risk I would face, the doctor explained, is the likelihood of the cancer spreading post transplant. My tumors are multi focal, meaning they are several different places in my liver. Because of this, there is a good chance it could spread to other places in my body the same way, primarily my lungs and bones. I would be at greater risk for it spreading post transplant, as I would be taking drugs to hinder the body's most important defense against cancer, the immune system. The doctor said his biggest concern at the moment was making sure the tumors had not spread to other parts in my body, so he ordered a CT scan of my chest, abdomen and pelvis for later that week. He informed me that even if the scans didn't show any tumors yet, they could be present but too small to register on the scan. This would be the primary reason he wouldn't recommend a transplant for me.

Dr. Ravi has a special interest in EHE and has seen around 15 cases in his career. He told me he has only lost one patient to it to date. Most people deal with the disease using a "wait and watch" procedure, meaning they come in every 3 months or so to get another CT scan and see if the tumors have grown or spread. The tumors tend to be very slow spreading, however, the disease is completely unpredictable. Some people live with it for years and some don't survive it. Up to this point there is no treatment that has been proven to help. In some cases, the cancer has gone into remission on its own and the tumors began to shrink.

That day was the first time I have felt completely scared and helpless through this whole process. I had been sitting in front of one of the best doctors in the entire country for my condition and even HE had no clear solution. I saw my parents break for the first time. I wouldn't say I had any anger towards God, just a sheer sorrow from the burden of it all.

When I got my results back from the doctor a week later, prayers were answered. The tumors had not visibly spread anywhere else in my body and they did not appear to have grown at all in the previous three months! It was such relieving news, and I feel like God had lifted a portion of the burden off of our backs. Dr. Ravi then reminded us that we had a decision to make about the transplant. He said they had actually discussed my case at an oncology meeting the week before. Afterwards, the head of the department approached Dr. Ravi and told him to do whatever he could to convince me to not get a transplant. The risks were much greater than the potential rewards, they both believed.

My parents and I left the hospital a little lighter after that meeting with the doctor. We knew we had to make a decision, but all felt that we were leaning towards not getting a transplant. I felt I could wrap my mind around it all a little more than I could before. The reality was that I would most likely be living with cancer for the rest of my life. Scary, yes, but also SO freeing. It's easy to say things like "life is short" and "God could take us at any time", but I actually get to experience it first hand. I have been given an opportunity to make the most of every second because of the reminder that this disease has given me, an experience I might not have had without it. Yes, it sucks to not be in control, but I was no more in control of my life before I found out about the cancer. The truth is NONE of us are in really in control.

I am still trying to process through all that has happened. I bought a couple books about the effects of alternative medicine and nutrition on cancer prevention. I want to take better care of my body, soul and mind and do everything I can to fight. I want to start cherishing every day and allowing God to use me to impact the lives of others. I want to do the things I've been putting off doing. I want to love others without fear and hesitation. I want to start living. I just finished up Donald Miller's new book "A Million Miles in a Thousand Years" on a flight this weekend, which I would highly recommend for those who have not read it. At one point Miller states that "fear is a manipulative emotion that can trick us into living a boring life." I couldn't agree with that more. I want my story to be exciting, and I feel like God has given me the opportunity to do just that.

Love y'all so much!

-Joanna

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.

-Jeremiah 29:11