My last post was full of downers of self doubt and sadness, so I thought I would post something upbeat for the holiday weekend. My family is vacationing with MaryBeth’s family (parent’s, siblings, sibling’s spouses and most importantly for MaryBeth, sibling’s newboarn infants). MB loves to hold and play with babies, so she has a 2 to keep her busy this week. It’s was great to watch her with them yesterday as she had a HUGE smile on her face just holding the baby and letting it fall asleep in her arms.
Healthwise, I met with Dr. Kauh on Thursday. The news wasn’t great. Essentially, we both agreed that I have worked through 3-4 treatment regimens to slow down or stop my tumor growth and nothing has really worked. My tumor is now a cm smaller than the original tumor and is growing around and getting tangled up in some very delicate arteries. Dr. Kauh is going to get me into a Phase IB clinical trial which will look at the potential efficacy of a new drug for treating cancer (they are not sure exactly which cancer it will help: pancreas, thyroid, or lung).
The hope is that this experimental drug holds some promise, but if now, the next step would be to set up home hospice care. Essentially, the hospice workers deal with the issues surrounding people who are dying (not that I am planning on doing so in the near future, mind you). Instead, they would come by daily (or more if needed) to check on me, provide medication as needed and all in all just be supportive of the transition we are going through. One benefit is that MB would have to worry less about taking care of me, as the hospice nurse would be able to take on someone of those duties, leaving MB and I more time just to enjoy being together.
A friend of mine, with whom I was talking about this yesterday, boiled it down for me. If the Phase IB trial doesn’t work, we’ve essentially exhausted palliative treatment for me. I have no sense how this will affect my prognosis, but truth be told, I have too many trips and plans in the works for me to die any time soon.
Next month, MB and I are traveling to DC for PanCan Advocacy Days. I was going to go by myself, but MB felt it would be helpful to have someone there to look after me (not to mention that she is committed to the cause, too). In July, the family and I will be flying up to NJ to visit with my mother and attend her annual blue berry festival. For those who are long time readers of this blog, you may remember that Mom owns a blue berry farm, and she has a party each year at which she invites friends and family members to come pick blue berries and enjoy in some revelry.
In August, MB and I decided to join my family in Wildwood NJ for the annual Hamburger family get together. We have been unable to attend for years and years because the trip to the beach occurs the week after school starts for our kids and we couldn’t see pulling them out of school to go to the beach. This year, however, given the situation, we thought we could pull the kids out so that we can all go join my family and my step mother’s family at the beach. Sometimes special circumstances call for special action.
So as you can see, we have a lot to look forward to over the summer. I’m getting excited about all the stuff coming up. And we are doing all this to continue to make memories that my kids can have of me when I am still generally healthy.
This past week was horrendously busy. It doesn’t sound like a lot, but I worked extra long days for much of the week and I am exhausted. Last night I think I ended up going to bed before 8p because I was so tired. I hate that my disease continues to affect me so that even simple tasks (working, driving, etc.) wear me out. I am so glad that my supervisors at work understand my situation and have encouraged me to take care of myself (e.g., work for a long as I can and then go home). It is hard for me to accept the reality that things are only going to get worse, with me having less and less energy which will impact all aspects of my life. I miss being more involved in Karate and Scouting, but I just do not have the energy to do either, really.
As much as this posts sounds like I’m complaining, I’m not. I getting used to my “new normal” reluctantly. I’m getting used to it, but that doesn’t mean that I have to like it.
Sorry for the long ramble of a post. I will post more later. But for now, the day is just starting out, it’s sunny and warms outside. I’m on vacation with my family and MB’s family, and things are good. Much to be thankful for today.
Thank you for all your well wishes, thoughts, and prayers. I say it all the time, but I truly mean it. I love you all and thank you for your support and love.