Sorry it has been so long since I have posted an update. I have a few places I put updates and didn't realize until today I have neglected my blog!
I did start TDM1 the beginning of March. After one treatment I had an amazing response to the drug. My tumor markers dropped drastically. However, I had a physical reaction as well. I had this horrible pain in my right abdominal region. Pain medication hardly put a dent in the pain. I waited to go in though, because I was having a fundraiser that week and didn't want to miss it. The day after my fundraiser I went to the ER and found out it was my gallbladder. They thought they were going to have to remove it, but the following day the pain began to ease and after more tests we found it was healing on its own.
I had this reaction again after the 2nd dose, and again they hospitalized me and thought they would be removing it. The surgeon felt we should give it more time and it again healed on its own. I was very thankful for this. The good news continued as I had a PET scan after this and the tumors had shrunk drastically. They saw no cancer in my liver, which previously had been covered with tumors. My lung still lit up some but it had gone down some. The lymph nodes were all clear as well. My oncologist said she felt it was almost a complete response... but she was assuming the lung may not be cancer. However, I know and now she knows that was a wrong assumption.
I continued on this drug until almost 3 weeks ago. A couple months ago my tumor marker started gradually raising. Not by much, but enough to worry me. So, I had a PET scan again and this time it showed a few lymph nodes and more cancer in the lung. This of course means I have to start a different treatment as the cancer has built up a resistance to the TDM1, I was so extremely disappointed as I was so praying and hoping this drug would cure me. I had such a miraculous response initially and I did what I have tried not to do but keep doing, I convinced myself I could be cured and be cancer free. Although I know the Lord can cure me I also know He hasn't promised me that and He can say NO! When I get complacent and believe this might be it I am always disappointed when it comes back or grows.
I don't know if it makes any sense, but by remembering that my cancer may take my life in the near future I do not get so upset when I find out it is growing... I am still upset but it doesn't hurt as bad. When I not only have faith but complete belief and hope that I may be cured I am much more distraught to find it isn't working anymore. I, of course, am always upset to think that I may die at anytime from this cancer, but knowing this, it is easier to keep in in the back of my mind and separate from it. I don't spend too much time talking about it. I try not to think about it very much. I guess I pretend a little bit that it isn't there all the while knowing it is... I know that sounds weird but it works for me. If I don't get my hopes up they can not be dashed again and again and again.
I have agreed to be a part of a trial. If my brain MRI is clear and the insurance approves I will begin this trial in the near future. I will be on an oral chemo I was on before and another oral drug that is new. It is only a phase I trial, which is rather scary, but my Oncologist doesn't have very many other options for me. This was actually the only one she presented me with until I asked for other options. She only has 3 other chemo options... this is very scary to me.
For those of you who pray for me and see me at church or other places, please know that I am not avoiding you or do not appreciate your prayers and encouragement. But as you may not know what to say to me I also do not know how to respond to you besides saying thank you. I typically get all my tears out on my husbands shoulder when I first find out and then try to separate from it so I don't have to be depressed and sad and crying all the time. When you tell me you are praying for me, ask me how I am doing, etc... my response will be short because I do not want to cry or begin to dwell on it again. I appreciate hearing your concern for me and it touches my heart. I don't want you thinking I don't.... I just don't know what to say besides thank you for your prayers and when asked how I am doing typically I say "ok" or "alright". I am not lying because emotionally I have spent my tears. I have spent as much time as I am willing to, thinking about it (normally 1 day). Then, because I can not change any of it I step away from it and put it in the back of my mind. If I continue to dwell on it I will only make myself feel worse. There isn't anything I can do but change treatment. Once I begin a new treatment and have all the side effects then I will respond in regards to my symptoms. Please don't be offended or hurt. Know that I appreciate your concern and your prayers, but it is much easier for me to communicate in written form where I don't have to be emotional but can just state the facts.
Thank you everyone who is praying for me. Thank you for supporting me for such a long time, and praise the Lord that it has been such a long time. Although I would prefer to not have been on chemo for 4 1/2 years, I am thankful for the time with my loved ones. I mourn when thinking about leaving my loved ones, especially my baby girl. I can't fathom leaving her without a mother, and that is what hurts me the most. Thinking about her losing me, her confusion as to where I went and why I am not here to comfort her, her growing up without me there and her not having me to support her physically and emotionally through all those mile stones and complications life brings.
I will try to get back on and update as soon as I know what is going on. My MRI is tomorrow... hopefully I will have the results soon and shortly after have the approval from the insurance to begin. I would prefer to start asap and not give the cancer free range to grow at its will.
thank you all again
