Hopeful but Apprehensive
Current day; Regimen 2, Round 10
Our journey began with our GP and quickly escalated with our first oncologist, Dr. Krishna Pachipala. We were meant to travel the first leg of this path with Dr. P. He was not only kind, as mentioned before, he was connected. He took us under his wing and guided us to where we needed to be. He was Cancer 101 for us.
After months of delayed action we finally caved in and called CanCare to get some much needed support. We had walked through fire and survived. Our families were beginning to struggle with their own confusion and helplessness. We needed someone who had been through this who could take us further.
We thought this is what we would find at CanCare. Instead we found a patient advocate who was zealously promoting aggressive participation in our own treatment.
He told us of his amazing fifteen year journey since his diagnosis of PNETs (pancreatic neuroendocrine tumors). We were exhilarated, knowing that we no longer had to stare death in the face. WE HAD OPTIONS!
Our patient advocate gave us several names of the world’s leading doctors in neuroendocrine and strongly encouraged us to seek out a specialist as soon as possible. Two of the names he had given us were right here in Houston at MD Anderson.
For the first time we considered leaving our safe little nest we had been nurtured in at Millennium with Dr. P. It was terrifying. We had come to love this team of doctors, nurses and administrators who cared so tenderly for us. We didn’t really have a choice. We had to choose life and we believed that “life” would be found at MD Anderson. So we set out to do just that; switch oncology teams.
I remember vividly the visit when we informed Dr. P that we would be leaving Millennium. All three of us knew it was time and yet that stopped none of us from being sad. We had built a trusting respectful love for each other over the past seven months.
MD Anderson had a condition that we be free from care prior to being seen by anyone at their facility. David was two months without chemo after having received seven rounds of that first regimen. I sat day after day and watched him wither away just as I had done back at the beginning of this nightmare. His weight was shedding, his appetite — non existent, his diarrhea returned, his ability to swallow diminished. There was nothing we could do but wait for our appointment to roll around.
By the time we got to MD Anderson David looked as pitiful as he did initially. I think it was even shocking for our new oncologist, Dr. Daniel Halperin. He was so taken aback that David and I nicknamed him Dr. Doom & Gloom as the news he delivered that day was not good.
Now with seventeen rounds under his belt he is good again. Not fabulous, but good. And because of that we’ve gotten to see a different face on Dr. Halperin.
Our chemo schedule was halted completely during Hurricane Harvey. David went four weeks without an infusion. Now that doesn’t seem as bad as two months but back then Regimen 1 was only being administered every three to four weeks. Today Regimen 2 is being administered every other week. So, four weeks is a lot.
David began having pains in his torso (he had these during those earlier two months) and told me his pain was a nine on a scale of one to ten. MD Anderson was completely shut down. Now just like Aurora Greenway (Shirley MacLaine’s character) in Terms of Endearment — I was doing everything I could to get my husband some relief. I had left messages with the service. I had left a message on the supporting doctor’s (Dr. Craig Kovitz) voicemail. I sent a message through the My MD Anderson portal. And just for good measure I had left a message with our GP’s assistant for a call back. I was just debating the benefits of contacting Dr. P with David when Dr. Kovitz called us.
We got some pain medication and anti-inflammatories just until we could get to the hospital again. RELIEF.
At our appointment we discussed how all regimens eventually quit working. “Dumb drugs. Smart cancer.” We were told not to worry though because Dr. Halperin had a back-up plan. And that he had a back-up plan to the back-up plan. Regimen 3 may be in our new future. That or a trial. We’ll find out.