Thursday, September 19, 2013

Every time I sit to write I'm bombarded with all the other pressing tasks that need to be accomplished at my desk. I am determined to give an update right now.....

I have not begun radiation as was planned. I was geared to face all the dire warnings the radiation oncologist had for me in regard to how difficult radiation would be for me when the oncologist called and changed everything. Some weeks back she had reduced the number of chemo treatments originally prescribed based on the PET Scan results that indicated an excellent response to the treatment. Unfortunately the rapid response slowed as revealed in later PET Scan and she moved me from the category of significant improvement to moderate improvement. She was not sure how to continue treatment because there is controversy as to the protocol in this situation, she was certain she needed to move quickly. She consulted with a doctor at UK who consulted with his colleagues and together they decided to continue 2 more rounds (4 treatments) of the same chemotherapy drugs I have been using. After that she would like me to repeat PET Scan and another biopsy and visit UK to determine the next step which could be either more chemo - different drugs or go on to the radiation. She has emphasized that my cancer is possibly refractory - meaning difficult or impossible to treat.

Frankly, I don't know what to think about all of this. It was very difficult to return to chemo after joyfully finishing my final treatment. I have to be honest and say, even as I left the last treatment I felt the Holy Spirit prompting me to expect the most difficult ahead of me, not behind me. I thought after meeting the radiation oncologist that it just meant radiation was going to be tough but as it turns out I have more than just radiation to face yet.  I'm not yet convinced the cancer is "refractory" as she emphasized because she had reduced my treatment plan and then returned to the original. I'm hopeful it just requires what she initially thought it would require. Only time will tell.

Symptoms from treatment continue to fluctuate. Some days are good days and some days not as good. For the most part "not as good" continues to mean fatigue and tired. I have been experiencing a good deal of edema which has caused pain in my joints. The worst in my hands but in my feet, knees, hips as well. I have been encouraged to use pain medicine but I find it virtually useless so don't use it very much at all. Besides the fact that it does not stop the pain it leaves me feeling "yucky" for lack of better description and I don't like the underlying accusation I am made to suffer when trying to fill the prescriptions (the doctor has tried a few different types). Apparently I could make a house payment with the street value of drugs I've got in the other room. As it turns out I'm not a drug addict based on not only the moral conviction I possess but it apparently wouldn't work out for me anyway, the drugs just don't do anything for me. None the less, everyone in the state of KY is officially considered a drug addict and made to suffer the shame and guilt of it when filling a prescription even from the oncologist. But now I'm thinking about politics and that is a whole other can of worms.

In addition to all of this we have been exposed to a virus so the entire family is down for the count. I spent last night watching my fever which was lingering close to the "call the doctor number" they gave me. Tylenol and turning the air conditioning down kept me home all night - I really do not want another hospital stay. We picked this up at a camp we went to last week. It was a family camp we had really wanted to attend but could not because the daily radiation treatments were scheduled. When we received the change in treatment plan we called the camp and they allowed us in late even though registration was closed and they waived the enrollment fee as well. What a blessing. We were all refreshed and filled and exhausted from a great weekend spent with 2,000+ people much like us - conservative, homeschoolers in love with Jesus. It was a fun time and we left with new friends from all over the US, Canada and even one family from Germany. I spent a lot of the time sleeping in our camper but was blessed by the sessions I was able to attend and I am always blessed knowing the kids are enjoying new experiences.

The news from the doctor was a hard blow. I felt discouraged and in need of a reset. The reset came fairly quickly and I'm humbled further at the love of Jesus and family and friends. Right now I'm just drained and don't feel much at all. That is OK. Next week will be all together different again. I was looking forward to hair growing back and energy returning and this battle winding down but I'm refocused on keeping up the fight and hoping for a fabulous outcome. Thank you all for continuing to pray for me and my family. We are growing weary, the prayers and the meals and the cards and gift basket are all so encouraging. Thank you!