Last week I learned two things which, I must admit, caused me to feel as though a rug (of hope) had been pulled out from under me. To back up a bit, I need to explain where Seattle was fitting into this picture (for those of you who read the previous post and were waiting for more info on this). I had been informed several months ago that Seattle may be a place that I should look into in terms of an allogenic bone marrow transplant. I believe they do the most allo transplants in the U.S. Flashing forward a bit, I was told a few weeks ago that they had a clinical trial that I may potentially qualify for....meaning I perhaps would be receiving my transplant in Seattle. While the idea initially startled me and brought me to tears, my heart eventually softened to the idea. I am at a point where I will do anything I need to do. I just want to lie down with my arms spread open and say to the medical world, "I am a willing guinea pig....try it."
I am queen of saying and writing what I refer to as "side notes." So here is a quick side note: for anyone who just read that and feels that I am depending more on the medical world that I am on my God....you are mistaken. I have surrendered all that I have to the Lord many times. I am simply trying to do my part and patiently persevere through this with His strength....and in the meantime you better believe that I will try what may be effective in my course of treatment. God has given us knowledge to use for His glory....and praise the Lord for the medical field. Ultimately, I know the Lord is my Healer...my life-sustainer...my eternal hope. I am trusting in Him to heal me....whether miraculously like the woman who touched His robe, or through medical intervention.
So, I was under the assumption that after my PET scan in early September, I would either be proceeding with one of two things. I thought that Doug and I would be making a trip to Seattle for the initial meeting with the doctors to get everything lined up for the transplant (assuming a donor would be found eventually). If we were not able to get an appointment in the near future, I believed I would go in for my third round of the EPOCH chemo regimen. So, here are the two surprises I learned last week from my doctor's office. First, there is not a clinical trial that would be appropriate for me in Seattle at this time. I was disappointed to learn this. I was also told two days later that I could not go in for another round of the chemo, because there were not "significant" enough results. This was very difficult for me to swallow. For those of you who are curious, my doctor feels it would be potentially damaging to my heart, as I have had a high dosage of adriamycin based drugs over the last year. I understand this could be the case. I also refuse to sit down and do nothing. Which brings us back to New York....
After feeling at a bit of a dead end with my local doctor, I contacted the doctor that I saw in May at Memorial Sloan Kettering Cancer Center. I received yet another recommendation from Dr. Carol Portlock that I see Dr. Papadopoulos (say it a few times...it gets easier). She is a bone marrow transplant specialist at MSKCC. Doug and I both feel that since I am not going through any treatments right now, this is an opportune time for another visit to New York City. We were really hoping that I would also be able to see Dr. Portlock again while we are there. Before I dialed the phone number to schedule my appointment with Dr. "P", I prayed out loud and asked the Lord that we would be able to see both doctors on this trip. As I spoke with the secretary I said "I know this would be a miracle, but we are hoping to have an appointment with both doctors." I was assuming we would have to wait a day or two in between. I was called back that afternoon, and my miracle had taken place. We are seeing Dr. Portock at ten o'clock Tuesday morning, September 22, followed by Dr. "P" at eleven o'clock. Thank you Jesus! Doug and I will be flying out Monday morning and returning home Wednesday evening.
I don't know what the appointments will bring us. I do feel a peace about returning to New York. We both really like Dr. Portlock and would just like to discuss everything with her. I trust her judgement in wanting us to see the other doctor, too. I don't know if this means a transplant would be taking place in New York when the time comes. We still are waiting for a donor. There are pieces of this puzzle that need to be found yet, but I know with all of my heart that the Lord is leading us.
In our college chapel (MVNU), I used to sit and look around at the beautiful and enormous stained glass windows. I like to believe that is what my life is like. While I sometimes just see one little speck of it....perhaps one color that is not even that attractive by itself....Jesus knows there is so much more than that. He sees it all....the magnificent beauty and wholeness that He longs for me to experience. Friends, whether on this earth or in heaven....I know I will be healed. I would like for it to be here....but no one can take that truth away from me. I love it....I love knowing that even when I feel a rug of hope has been pulled out from under me, Jesus is still holding me. He is never taken my surprise....He knew we would be going to New York again, and I will love Him and trust Him every step of the way! I feel so much better after sharing all of this with you. Please be in fervent prayer for these appointments on Tuesday. Pray that we would know the right questions to ask and for the doctors to be filled with wisdom and insight. Thank you to all of you who faithfully walk this journey with us....I really do love you.