Day 100

Day 100 has come and gone, celebrated on Saturday just as lavishly as had Day 100 been the newest spike in a blood- and immune-growing craze. My mom and I exploited the faux freedom of Day 100 immunity and jutted over to Uptown’s Juut Salon for our first-ever facial (thanks, Weber Shandwick Minneapolis colleagues!). I had to make a dent in the thousands of facials I owe her for the permanent facial strain she held for 40 days beside my hospital bed. We left greased and gilded in a relaxation I don’t think either of us has felt in months.

Later I drove south to my dad’s for a typical Langer feast, as if Miss Day 100 was the prodigal daughter and we wanted an excuse for the fattened calf. But that’s how all celebrations are treated under the Langer House, as Feast Days.

Grandma Langer, Grandpa Langer, Aunt Sue, Uncle Jay, Jack, Cindy, Me, Dad Celebrating Day 100

There we were, out on the patio, huddled around my grandpa as he recounted his research on our family tree. He was prepping my Aunt Sue for her upcoming trip to Europe, a trip where she’ll search for the baptismal records and gravestones my grandpa has already uncovered dating back to the 1500s in an area that is part of the Prussia to Germany to Poland rotation. As he recited the 16 Ludwigdorfs that were not the Ludwigdorf we hailed from, the complexities of where one comes from glared at me from the illiteracy of his Polish map. I couldn’t help but think of my donor’s familiar genes. Had her ancestors been my ancestors back then? At one time were our great-great-greats the blood sisters we skipped generations to become today? Or are our matching genes a fluke of evolution? It’s fun to imagine.

Day 100 was less of a pinnacle than what the “Survivorship and Your Bone Marrow Transplant” materials foretold. After all, I had moved on from the Transplant House way early, my Day 100 biopsy was already in my medical records, and my mood-swing-y blood cells haven’t always been on the up and up. But I got to ditch Dorothy and the other “big gun” drugs that have been propping up my immune system. Now we’ll see how I do on my own against those viruses, bacteria and fungi, and if my evolving bone marrow can breed some Day 60-style blood cells again.  I’m becoming more of a believer.

 

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Falling In Line

It felt sacrilegious cuddling with my cell phone Thursday night in my bottom bunk at the cabin, but Julia had to be calling Friday morning. She couldn’t make me wait all weekend. I’ve gotten used to the beeps and rings of IV machines since May, so I didn’t want to risk mistaking The Big Call for a tantrum from Dorothy, the newly agreed-upon name for my Old Bag of an IV-toting backpack.

The rural phone grids held. Julia called at 7:30 a.m., a full two and a half hours before my hemoglobin would have me rise and shine otherwise. Her cheerful voice was a welcome wake-up. All 16 of my chromosomes in some special cell were lined up as nicely as I lined up with my 15 classmates in 3rd grade at St. John’s in Searles. Before transplant 14 were out of line, but they haven’t budged since the Day 30 biopsy. The organized lineup led the pathologist to note “No sign of MDS or blasts” in his report, an accolade as appreciated as those scratch-and-sniff stickers Mrs. Hodapp used to put on exceptionally neat papers.

What’s more, the DNA of my blood and bone marrow is still 100 percent my donor’s – a “2 for 1” as Jimmy calls it. My doctor had been particularly anxious over this measure because my blood counts have steadily fallen for three weeks. Contrary to what we feared, there is no problem with my graft. I’m still 100 percent. Anything less than that is worrisome because it leaves room for the cancer cells to come back. My marrow just has to start working a little harder to “populate” my blood with some meaty cells, Julia said. “So this is really good news, Jenna. We’ll talk more about it Monday when I see you.”

I rolled out of my bunk, careful not to rest my knee on my IV tubing and pull my hickman out even farther out of my chest. Gross, I know. The now-arbitrary blue stitches dangle about an inch down from where they should be, as scar tissue tries to hold on, at least another few weeks. Led by the weave of early morning moonlight and sunlight, I sat next to my mom on her bed. “Julia called,” I said. “I’m 100 percent.” She hugged me tight and clenched my hand with her even smaller one, letting a few tears go but not letting out exclamation that would wake the others. “That’s really good news,” she repeated, pushing the words out in big breaths, as if she’d held them all week.

I think my whole family breathed a little easier for the rest of the weekend at the cabin we’ve enjoyed together for years. Although I still had to stay away from the who-knows-what-could-be-in-the- lake and sand, didn’t dare a game of horseshoe or a rowboat for fear of rupturing my hickman, and still shied away from the fresh summer harvests that could bring sickness, I didn’t mind as much. That night, the moon at the end of the dock shined brighter, closer than I had thought it earlier in the week.

Grandpa Domeier with one of his "wall hanger" fish.

Dragging around Dorothy when Andrea's Polish Golf balls are lobbed too far. She gets heavy. Probably why my hickman isn't faring too well, but I pull from the tubing. Relax.

My grandma made me a Day 100 cake (German chocolate, of course). Saturday, Aug. 20 is Day 100.

Jack (brother) and Kurt (cousin) head out to fish

My cousin Andrea and me. I grew up across the street from her, a fellow St. John's-er.

My grandpa and aunt Cate take a walk/scoot around the resort.

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No News

Still no news from Mayo on last week’s bone marrow biopsy. Maybe they’re all taking a break like we are. We’re keeping close to the phone, although a phone seems blasphemous here. Love from Up North Minnesota.

Crow Wing Lake #11 Near Akeley, MN

Reason

Today I’m limping around the house, recovering from an easy bone marrow biopsy at Mayo yesterday. The good news is that this one hurts far less than the last one – which really didn’t hurt that badly either – and I’m attributing that to the fact that they didn’t have to dig so far into my hip bone to find a decent repository of bone marrow. This girl has marrow to give. We should find out the results Monday afternoon.

Yesterday was Day 85, a bit early for the routine Day 100 biopsy, but Julia seemed to need bribery when I dropped the “Can I go to our family cabin all next week, five hours from Mayo?” question. She said she gives Day 100 biopsies often in the 80s and 90s, and originally wanted me to get mine next week, I thought I’d offer yesterday as a bait to say yes to my “Up North” aspirations.

Plus, my blood work hasn’t been the greatest lately. My platelets keep falling but my white count is holding steady, and that’s the evidence behind our hope that my up-and-up recovery from HC is to blame for my dwindling blood counts. The real shiner in this all has been my hemoglobin. After my double-transfusion last week I jumped from 7.5 to 10.5. I’ve been running around the house all week with so much energy I don’t know what to do with myself. I’m doing curls with my IV fluids backpack just for fun. I’m reading into all hours of the night because I CAN’T sleep. I don’t understand what I’ll do when I’m a normal person again with a 12-16 hemoglobin. I think this explains my run-tourists-over pace in DC.

One of my new I-have-energy projects is to organize and album-ize every photo I’ve ever printed. That means even the high school cardboard-camera-at-every-danceteam-competition era. I love you dear friends, but the 100s of versions of my face plus your face photos were not necessary. Of course I didn’t write on the backs of them, so figuring out their dates usually involves two factors: 1) The length of my hair. When I was growing it back out the first time, there were many “cut off the mullet, just cut off the mullet” stages. 2) If the my eyebrows were long and spiky. I took very seriously the rule my mom told me about not plucking eyebrows from the top. It took me a while to learn I didn’t have to be so absolute, especially when your eyebrows heighten and bush-ify when they reach your nose crease.

Yesterday I came across a 2005 photo of my dear friend Laura Jahnke and I at Glamorama (a yearly Macy’s socialite fashion show in Minneapolis to benefit the Children’s Cancer Research Fund). It just so happens to be happening tonight. Laura taught me more about poise, gratitude, humor and sincerity in the face of illness than anyone I’ve ever met. Two weeks before she died of osteosarcoma, a death she and her family knew was imminent, I visited her meet-and-greet style along with several others who flocked to Minneapolis when she was in town from her new Ohio home. That girl, already in a wheelchair but displaying her bald head like a trophy, was the calmest, most at-peace person in the room. Expecting to stumble through a conversation about her health, I was flummoxed when she sincerely asked me how I was doing, never slipping her eyes away from mine or wilting that sincere smile.

Laura and me (yes, that's the bad, growing-out hair you can all look forward to again)

I often think about Laura and where she’d be today. No doubt she’d be up to something worth all our while. That’s why when someone says to me, “Ah well, everything happens for a reason,” I force a shuddered half-smile and walk away. There is no reason that Laura died from the same cancer I survived. No reason Alex, Nantedah and Amy died, either. Sure, they taught a lot of people a lot of valuable lessons, but to say that their early departure made their examples more valuable for the rest of us is trite and self-righteous. Likewise, there is no reason there are more than 250,000 children famished in Somalia, thousands that still live in tents in Haiti, and a hospital in Benin that draws all patients’ blood using one needle because they have no others, while my house is plush with food, a secure roof and more medical supplies than that entire hospital. No, everything does not happen for a reason.

Instead, as Laura taught me, with the right support and a thoughtful spirit, you can reason with anything.