Difficult Conversations

I have been going to MD Anderson just about every Friday…either for labs, to see a doctor, or sometimes just for a dressing change on my PICC line. I have lots of opportunities to visit with other patients and with the staff at MDA. I have written frequently on Facebook about the opportunities the Lord has given me to encourage those who I call “deer in the headlight” patients. Those who I can tell are fairly new to the process and who look lost and afraid. I was once there and understand those feelings. It is my honor and privilege to be able to talk with them and help in whatever small ways I can.

But today I’d like to talk about a couple of conversations, both of which hit me pretty hard. First, while I was in Infusion Therapy getting my dressing change, the nurse asked me, “Is that your hair?” Not an uncommon question in my circle. ☺ I told her that it was and she complimented me on it. I told her that I was very thankful because I had lost a great deal of it twice so far. The first time it grew back much grayer and mousy looking with a much different texture than my regular hair. Then the second time I lost it, it grew back it’s original brown (with just the amount of gray that I was on track to have) and with my original wave and texture. It was a very nice relief! She then told me about a friend of hers who had lost her hair and it had also come back gray and mousy. I teasingly said that maybe she just needs to lose it a second time and she’ll be lucky like me and it’ll come back better. Then her whole face told the story as she said, “she doesn’t have a next time.” My heart sank. Why hadn’t I thought before I had spoken…especially here. She shared that her friend had started with breast cancer, which had then developed into brain cancer. But, she said, her friend had bartered with God for ten years. Her son had been eight years old when she had been diagnosed. She asked Him to please let her see her son grow up. She made it to his high school graduation! Then her time was up. She had gotten her ten years.

It made me think a little of my situation. I have no idea how long I will have here. I am so thankful for the time I get to spend with my sweetheart, the time that is carved out for me to be with my grandchildren, conversations with those I love about everything and about nothing at all. Time sitting on the patio holding hands or walking across the fields under the big blue sky in Oletha.

Which brings me to the next conversation…the one with my doctor. While we know it’s only been six weeks since my DLI (donor lymphocyte infusion) and there is still time for results to come, it doesn’t seem to be working. My donor count has only moved a few points. So the plan is to give it another four weeks with continued lab checks, and on October 6 we’ll do a bone marrow biopsy and a full set of labs to get a complete look at the situation. She’ll then present to the team once again and possibly/probably recommend a SECOND DLI. This time there would be no pre/chemo; just an increased amount of donor cells…which to us increases the fear of GvHD. :/

As of now, my WBC and my platelets are holding well. She said that I am an anomaly. Of course, I am. I always have to be different! If I were to only get a ten-year gig as my nurse’s friend did, I am already six years into it. That would leave me only four left. I wouldn’t see Dana graduate. I would barely see Caleb and Ethan get out of elementary school. Jonah would remember. But I’m not sure if Lily and Elias would have had enough time.

Teach me to number my days, Lord! And if you are still into bartering, I’ll take 30!

"So teach us to number our days that we may get a heart of wisdom."
Psalm 90:12