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Day 100

24 Aug

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

14 Aug

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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Reason

6 Aug

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.

Not So Good Behavior

25 Jul

Well that didn’t take long. Almost as soon as my little red car eeked up the steep driveway to our little red house, I didn’t feel quite right. After a weekend of hoping it would get better, I went to Mayo on Tuesday and initially baffled the doctors. With symptoms getting worse, we made the trek again to Mayo last Thursday to figure out what was really going on – something called hemorrhagic cystitis (HC). You can look it up if you want. Not fun.

We go back to Mayo tomorrow to learn more details, but basically it’s a painful condition caused by one of my dirty chemo drugs – Cytoxin – that sat in my bladder too long and wrecked things, even though we took all the proper precautions.

So in addition to the IV anti-viral medicine at home, I’m now on some serious fluids for 12 hours a day.  Let’s just say I make a run (or downright sprint) for the little girls room about every 8 – 30 minutes. It’s pleasant, really. I don’t know how long I need to be on these fluids, but the docs ordered a month’s worth. Ugh.

Now I’m my own little walking pharmacy, with UPS boxes crammed with medical supplies arriving almost daily: 

My body needs to stop being so dramatic. It’s one big fun circle of revenge. My osteosarcoma treatment caused thyroid cancer and MDS, and now the treatment for MDS caused hemorrhagic cystitis. Pull yourself together, body.

Jimmy likes to remind me that I’m doing pretty well for having my entire immune and blood system kicked to the curb, but these setbacks are hard when I’m supposed to be getting better every day. But we decided I have a new opening line: “Hi, my name is Jenna. I can grow a new immune system. What can you do?” It will also make a nice bolded bullet on my resume. 

Next time I hope to have real adventures to report from the Motherland. 

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We Made It (Four Blocks)

12 Jun

The Exit

We made it. To the Gift of Life Transplant House we came on Thursday – and oh how up-and-down my hospital exit was.

We knew early Thursday that I was home free, but of course I needed platelets, discharge papers and a prescription before I left. At the same time Jimmy, who had just taken his DO and MD Boards in the last four days, was making up time on his way home for the snarly Chicago traffic that morning . We were both just itching to get away – he to New Ulm and then Hackensack with his family and I just four blocks down the road. 

(The Transplant House, or The Halfway House as my mom likes to call it, is comfortably hugged by the Mayo Clinic and St. Mary’s Hospital just four blocks on either side. It keeps all of us on just a little less Ativan.)

Just as I was waiting outside the hospital in tears – I’m talking seriously weeping because my prescription was four-times unfilled and my mom was finally (huff, tear) getting the car, Jimmy pulled up and surprised me with an unannounced visit on his transition from I-90 to Hwy 14. My mom, now driving to the front of the hospital, sees me embracing some guy. “Oh no, she’s so pathetic-looking a strange man thought she needed a hug. What am I going to do with this girl?” Needless to say, I was just fine after that. (BTW, Jimmy is coming here starting Tuesday (!). My mom keeps reminding him, “Medical school starts next week.”)

The first thing I did when I got out of the hospital was go for a drive. Not me – no, you should see the bag of meds that keep me from driving – but just looking out the window. That’s about all I can do because I’m supposed to avoid groups of people. Who knows what they have. But I’m the proud new owner of several Mayo-stock masks and I can go outside, so I’m happy.

Living “Communally” 

The Halfway House is wonderful. The accommodations are completely above what I expected. Granted, I’m used to a nurse and/or IV pole waking me up every two to three hours and I still can’t get that hospital stink off my clothes, but this place is easily distinguishable. With that comes a bunch of rules, but hey, I don’t want some sick person not using the water machine correctly and I definitely don’t want that guy down the hall who hasn’t taken a shower in three days to walk around in bare feet. (Most of the people staying here are OCD-clean without the rules anyway.)

Arriving at the Gift of Life Transplant House

The kitchen

The dining room

My dad, Jack and me grilling in the backyard of the Transplant House for Father's Day

Next Up

So what’s next? Well, lots of things. We met with Julia Friday and my blood counts were smashing. I still have a “very naïve” immune system as Julia put it, but they’re good for where I am. My neutrophils are now a hefty 1010 and we’re waiting for all these -cytes type of white blood cells to follow their lead. I only needed a 3½-hour transfusion over the weekend. “An immune system in a bottle,” Julia called it. 

Tomorrow is a big day. I’m getting another bone marrow biopsy to see where things stand. Are there any blasts in my blood? (Yuck – remember that dirty word?) Is the MDS actually gone? And the best – Have I acquired my donor’s DNA yet? Yes, my blood and bone marrow will actually have the DNA of a stranger. The rest of my body is me. I’m already thinking of creative petty crimes to get away with. We won’t get the results for a few days, but please send extra prayers on this one. It sort of shows if the BMT worked or not.

But the bottom line is I am so grateful to my doctors and nurses who helped me get out of the hospital a little banged up but in pretty good condition in 40 days. A wonderful team they are.

One of my favorite nurses, Jeanie, and me on the night before I left the hospital

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Engraftment Day

7 Jun

Day +26. It’s Engraftment Day! The day when my doctors finally consider my donor cells to be successfully growing and making new blood cells in my body. I told you my donor would like me.

We began to see signs of engraftment late last week because my white blood cell counts were on the rise, an indicator that my neutrophils – a type of white blood cell that are vital for fighting infections and growing platelets that control bleeding – would soon follow. Sure enough, they went from undetectable last Friday and jumped to 350 on Saturday. By Sunday they had passed the big 500 marker to 650. (congrats to the 9% of you who voted for June 5! – especially to Julie Seifert, who was the only one to get it right on the calendar in my hospital room!) Yesterday morning I awoke to hear they were at 800 and today they dipped a little to 790, still well above the 500-gets-me-out-of-here mark.

After 36 days straight in the hospital, my family and I are so grateful we’ve met what Be The Match calls a “milestone.” Now my task is to prove I can get out of the hospital – that I can get off the IV pole and ingest all the pills that normally hang in IV bags, drink enough water on my own, and eat enough calories, a new quandary for my usual first-in-the buffet-line self. But with the help of those sweet little Ensure shakes you might see mocked on an SNL commercial or something, I’m trying.

I’m sorry I haven’t been the best communicator of this increasingly good news over the past week, but the move up in neutrophils hasn’t been reflected in how I’m feeling. I won’t go into the nitty-gritty, but mainly I’ve experienced some headstrong engraftment syndrome, where your bones ache and reel, you can barely peel yourself out of bed, and an assortment of other fun symptoms. I also had an unnerving reaction to a new drug on Sunday, which kept me laid up for a good day or two.

As of today, my mom has taken the lead in landing us a room at the Gift of Life Transplant House. Dr. Arndt is vehemently trying to get me out of here by Thursday. (Thursday!) “You’re past the launching pad, it’s almost blastoff,” she said this morning.

So what’s next at the Transplant House? Until Day +100, I’ll be recruiting committed caregivers (mostly my parents and close family) to stay with me while doing all sorts of the daily cares I would be doing in the hospital, plus three-times-weekly blood work and appointments at Mayo Clinic, and what I suspect will be several visits to the Pediatric Infusion Therapy Center (PITC) for random orders of fluids, blood transfusions, medications, etc.

There are definitely still many obstacles ahead – viruses to watch out for, graft-versus-host symptoms, strength to rebuild and more types of cells to grow. And I will certainly not be back to normal – I still have to abide by the “no fresh fruits or vegetables rule” and have acquired the “no going in large, public spaces” (like a restaurant) rule, the “wear a mask if you’re around a group of people”, and the “no going outside 30 minutes of Rochester” rule – but I’ll be losing so many rules, most important of all, “stay in your hospital room.”

Thank you for your consistent support even during my hiatus. Oh, and my mother will never be writing a blog entry again. Lesson learned.

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Reinforcements

18 May

“We’re bringing in reinforcements for the Mayo Calvary,” announced Dr. Arndt, adopting my vocabulary as she led the charge of 15 doctors and nurses into my stowaway room this morning on rounds.  

The last two days have been worse than the last time I wrote. The docs have concluded that the root of my fevers is a staph infection, so we’re sticking with those sock-it-to-ya antibiotics. But the pain in my legs has gotten far worse to the point that I can’t walk. I can’t even move them. For the last three days I’ve been beefing up my arms and challenging my parents and nurses to move me around without touching my legs, letting them bend weirdly, leaving them unsupported, etc. It’s been fun.

My doctors are a bit stumped. A leg ultrasound and chest x-ray yesterday came back normal. But it got so agonizing last night that they called neurology for a late-night exam. (yes, I made a poor on-call doctor come back to work). The very good news is that I don’t have a spinal infection, a suspicion of the neurologist that led me to the MRI machine at 1 a.m. last night. Clanky MRIs are definitely not fun when you go in with a spiking fever, but it was such a relief to cross that very serious complication off the list. 

Thankfully the collaboration of a bunch of big minds this morning has rendered my legs feeling a bit better. I’m bending them now, in fact. Granted, I need someone to help me bend them, but it’s progress. The new thinking is that this leg thing may be the result of a combination of things – an offshoot side effect of my anti-nausea drug, which they’ve switched, plus maybe a symptom of this lovely staph infection. Let’s hope this works. Otherwise it’s back to the drawing board.

No More Redhead, But I'm Convinced Chemo Made My Freckles Come Out

Oh yeah, and I shaved my head yesterday. My red hair was falling out in clumps, so it’s better to just get rid of it. There’s a volunteer barber here who comes around and does it for you – a wonderful service. My mom teared up. I didn’t for some reason.

Now I know “Redhead Report” no longer technically applies, but you know a redhead is so much more. Plus I thankfully still have eyelashes to prove it.

For all the comments, Facebook messages, notes, cards and other fun forms of support you’ve come up with, thank you, thank you, thank you. I’m reading everything and it helps more than you know.