I have just returned from a whirlwind 27-hour road trip to Oklahoma City. I am sitting in my quiet-for-now house, absorbing the familiar surroundings and a little bit wishing I had never left in the first place.
I left Texas, my Texas yesterday morning with my mom. Can I just take a minute and tell you how great my mom is? She holds down a full-time job in which she pours herself into other people. But...she is Mom and Nana first. We all know it. She insists on attending each doctor visit, regardless of time, location, or convenience. She has traveled literally across the country with me on the search for a cure, and she is my #1 cheerleader. She has lived in my home, taken care of my family, and stepped in for me when I simply could not do for myself. She created an Allyson playlist just for this trip with my favorite tunes, and we listened to it going and coming. There is no one who gives more, expects less, or has a bigger heart. I love you, Mom.
Back to the story....Mom and I drove the 3 hours to OKC and made it there with a little time to spare. We checked in to our hotel and I managed to get in a quick nap before we were in the car again headed for the OU Medical district. I have to say this for Oklahoma: The CT scan I did there was the easiest, most pleasant (if such a thing can be pleasant) radiology experience that I have had. The staff was efficient and kind, AND, instead of the terrible barium drink, they only asked me to drink a regular bottle of water before the test. It made for a much, much more comfortable exam. I was in and out of there in record time. I didn't leave empty-handed, either! The sweet nurse loaded me down with a fresh bottle of water, a granola bar (to make up for not eating for 6+ hours), and a thank you card. Texas, take note! There IS a better way!
We had been back in our hotel room for just a few minutes when my phone rang. It was the research nurse calling with results. The scan had disqualified me from the clinical trial. Just like that, I'm out. Yes, there is cancer in there. But instead of being one (or more) large masses, there is what is known as "papillary smattering." It means that there are lots of small pieces of cancer just...everywhere. Monster is having a block party.
I couldn't help it. I cried. I have found that the longer the fight wears on, the less I tend to cry. I suppose I'm used to it. But never before have I wanted for the cancer to show up bigger or plainer on a scan...and the one time I need it to, it does THIS?!? The news was more than my heart could bear.
We spent a long and noisy night in OK, thanks to a rambunctious group of retirees who stopped in during their bus tour (Tour of what? I am still wondering.) and the truck stop next door to our hotel. Neither of us was sad to pack up and check out. On our way out of town, we stopped back in at the medical building so I could retrieve the CT disc and copies of the report. The research nurse met me in the lobby and provided this tidbit of encouragement: There will be a site for the MEK162 study opening in several months closer to my home. By that time, perhaps my cancer will have grown to meet the criteria size.
Yes, and perhaps the farmer and the cowman should be friends.
I did not cry when I finally saw the Red River in the rearview mirror. I would sum up my visit to Oklahoma by borrowing the words of a friend I once traveled with: "This state is a complete disaster." (**No offense, of course, to my friends with OK ties. You can still feel free to eat your fried pies, cheer for your football team, and house your law firms inside your churches.)
So what now? Good question. Before I even left Oklahoma, I called Dr. F's office. He again offered to set up chemotherapy, just to give me something to try. I again declined, noting that if I have any more chemo--no matter where or what--I will have zero chance of EVER getting into the MEK162 trial, as I have already maxed out what they allow in that area. Not to mention that any chemotherapy that is available to me as a "standard of care" I have already taken and found no success. He was not surprised. Dr. F suggested that I might try calling MD Anderson again, essentially starting over there with another doctor. MDA has clinical trials that are exclusive to their organization. For that reason, I will take his advice.
When Goliath was little, he loved to play hide-and-seek. I would hide, usually with a baby brother on my hip and Abby Dog following closely, and he would look for me. Some days I would deviate from the usual hiding places--in the shower, behind the laundry room door, underneath a blanket in the closet--and he would have to work harder to find me. If it was taking too long to find me, he would just stop looking. At age 3, he didn't have the courtesy to call out and let me know he was done...he just quit. It was too hard, it was taking too long, he couldn't find what he was looking for. (Would have been nice to know on that day I hid in the dirty laundry hamper. I couldn't stand up straight for two days!)
I feel like that little Goliath now. I am so frustrated! The search has gone on for a really long time. I just want to wave the white flag of surrender and be done. I want to get back to what I want to do and forget what I have to do.
This week's disappointment has brought back the old question that has nagged for such a long while: What does God want? I rarely do the "why me?" thing; I tend to think instead "why NOT me?" I know that there is nothing about me that is better or more deserving than anyone else. But why the ongoing suffering? "Suffering" is a heavy word, but there is not a better one to describe the physical pain I have, but also the emotional anguish that I carry--and others share. Sometimes I think that this would be so different if I had never married the man I love....or if we had not had children....or if my "Original Five" weren't so close....or if....
I were alone.
I HATE knowing that I am causing pain for others. If I could walk away........
I would get exactly nowhere. Cancer would still be there, suffering would follow me. It is hard to follow God when you don't understand Him, isn't it? It's hard to know what to do when you feel forgotten. It is hard to trust when you feel let down.
"He has shown you, O man, what is good. And what does the Lord require of you? To act justly, to love mercy, and to walk humbly with your God." Micah 6:8
Lord, help me to do what is good. I want to walk with you, and I need your strength in these difficult days. I don't understand cancer, I don't like it, and I would love it if you would erase it completely from my body. But I know that you have a plan for me and I believe that it is good. Please help me to trust you. Show me where to go and what to do next, and then lead the way!....because I will follow you wherever you go. Amen.