Archive | July, 2011

Belt It

31 Jul

Between the 24 hours of fluids and the two units of red blood cells I got Friday I feel…well…full. My face is puffy. My feet feel like over-blown balloons. I know you’re thinking, “Gosh, it might be fun to poke her.” Good thing for me, I think I’m finally deflating.

On Friday a check of my blood showed a mixed bag. My white cells had increased (yay! because I somehow caught a cold that needs fighting), but my platelets and hemoglobin were slumping even further. But those snazzy white blood cells – rising all by themselves by a whole point – lend us real hope that this unwelcome drop in my blood counts is really a result of the hemorrhagic cystitis, not a problem with my graft. That’s what we’re banking on, and we have no bone marrow biopsy scheduled.

In the meantime, I’m trying to keep above these de-energizing 7-point-something hemoglobin levels, above-70 dewpoints, and oh-yeah, I’m-tied-to-a-10-pound-sack-of-fluids days.

My main diversion has been my red set of four wheels. It doesn’t judge me for my ability to grow red eyebrows and red leg hair but still-inability to grow red head hair. It shields me from the germy public but cruises me through lots of public places, breezing through the cornfields, past the red barns and stopping at all historical markers. I can roll the windows all the way down with no care of blowing, snarling hair. And I’m learning how to sing at the top of my lungs to the radio again. It’s got to be the right song – Dixie Chicks always works, or a 90s Shania – but I’m finally warming to my old belt-it tendencies. For some reason I’ve chosen the long road, but I’m trying to find the song in it.

 

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More Bad Behavior

27 Jul

“This is for Jenna Langer?” Julia asked again, scribbling down numbers recited to her over the phone. “Can you say them again?” she asked, following each line of numbers with the ballpoint of her pen.

My blood counts inexplicably took a nosedive from last week, completely wrecking the weeks-long upward curve I’ve enjoyed since leaving the hospital. Some of my counts are even in transfuse-able territory, a place I haven’t been since they bottomed out in the transplant unit.

On the homestretch to Day 100, my family and I are not amused by these dramatic blips.

I could see the thoughts barreling behind Julia’s grimace. “I want to see you again on Friday,” she said. “If your counts keep falling, we’ll have to do a bone marrow biopsy next week to see what’s going on in your bone marrow.”

After more of my medical team weighed in, the agreed-upon hope is that this unwelcome slip is a fluke – a result of the anti-viral treatment for CMV plus the hemorrhagic cystitis, which is draining valuable hemoglobin and platelets from my system. To more quickly get rid of the latter, they’ve switched me to 24 hours of the backpack fluids. I’m the most hydrated girl you’ll ever meet.

In anticipation of Friday, I’m doing some inner-coaching of my bone marrow. “Donor cells – fight. Jenna cells – give it up.” I’ve never wanted so badly to be somebody else – my dear donor. 

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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Home! (On Good Behavior)

17 Jul

“Good news,” said BMT nurse practitioner Julia. “You’re CMV test came back negative – that’s two weeks in a row. You know we’re all excited that you’re doing so well, and we think it’s time to transition you home.”

Knowing the healthy benefits of being home, Julia and team were enthusiastic to send me the short 120 miles west, so long as I was continuing my upward curve – uppity (or at least stable) blood counts, absent graft-versus-host disease, no new infections, etc. – and two weeks’ worth of negative CMV tests. The second negative means they can spare my kidneys one dose per day of the tough anti-viral IV and switch to once daily doses at home, given through these things that look like baby bottles.

After a few days of arranging by Mayo, I got word that a week’s worth of home healthcare was set, specialty pharmacies identified, and my weekly doctor appointments at Mayo scheduled. My mom, sympathetic to my 72-day stint in Rochester and excited that I was leaving Mayo-land a whole 38 days early, left work early and picked me up amid a flash flood warning.

We left my elastic-waistband-denim-wearing, Wheel-of-Fortune-watching old friends at the Transplant House, only to arrive in New Ulm, a town that has nearly as heavy of a concentration of traffic-watching, home healthcare-receiving people. But alas, I’m still one of them.

But really, in these weeks at the Transplant House I’ve learned from several astounding people – old and young(er) – who are going through unimaginable trials. The man from Colorado who received a heart, liver and kidney at once to halt the progress of an organ-killing disease; the couple from Oregon who have been at the Transplant House for 10 months waiting for a set of lungs for his wife; the Mennonite girls who leave their own homes for six-month stretches to clean the kitchen I use at the Transplant House, sing to me in the hospital, and entertain my questions in the hallways.

The other condition of being homeward-bound is that I remain just as much of a hermit as I was in Rochester. No bars, restaurants, grocery stores, shopping malls. Cleanliness. Rest. Close watch. But of course I’m finding some things to do. I surprised my grandparents and a few other rellies by popping my still-bald head around a corner. I’ve already had a hearty meal of sauerkraut and dumplings (Czech, not German), cooked Jay Vancura-style. I even made it home in time for Bavarian Blast, but the combination of Amazon-level dew points, kegs and kegs of beer, and crowds make it an anti-Jenna event this year. Good thing I’ll be back next year.

Dirndyl and Lederhosen Leads to Questionable Polka Dancing, 2010

Polka Band Pulled By an Old John Deere Tractor at the 2010 Bavarian Blast Parade

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Capable Hands

12 Jul

One of my biggest upsets about ditching DC was leaving behind my world map shower curtain.

Not only was the map a colorful addition to our bathroom, but I learned a lot. I could beat most anyone at Sporcle’s Countries of the World game (except my roommate Karen, who had the same shower curtain advantage as me). This week I was relieved to know that I had left the shower curtain in capable hands. Karen and visiting friends Dan and Erin ceremoniously divided the new South Sudan from its parent Sudan. They went so far as to play South Sudan’s squeaky-new national anthem and even represented America and China by flags at the ceremony. Too bad I wasn’t there – you can bet Germany would have been flying high, too.

No Room for Error

I’m still marveling at the accuracy of the new border.

There are arguably 197 countries in the world now with South Sudan, and nearly seven billion people in those countries with all sorts of hybrids of HLA types. In fact, with modern testing, there are billions of different HLA combinations possible. Because HLA is genetic, patients are most likely to match someone of their own race or ethnic heritage. As I mentioned in a previous blog post, minorities have a particularly tough time finding a match. Of the 9 million people that make up the Be The Match® Registry, only 10% are Hispanic, 7% are African-American and 3% are multiple race.  (Source: National Marrow Donor Program® Key Messages, Facts & Figures)

To increase these numbers, Be The Match® is celebrating African-American Awareness Month with their STEP UP campaign. (did I mention TLCs T-Boz is spokeswoman??) I am particularly drawn to 11-year-old Imani’s story. Like me, Imani has MDS and needs an unrelated bone marrow donor to live. Unlike me, she can’t find a match because she’s biracial (African-American and white). Imagine if you were Imani. Imagine if you were her parents.

To learn about volunteer and sponsorship options, and to sign up for your slot to swab your cheek and join the Registry, go to: http://www.keeponkeepinon.org

That’s why my friend Jen is teaming up with Be The Match® to host a Marrow Donor Registration Drive at the University of Minnesota’s TCF Bank Stadium on Saturday, August 13 from 9 a.m. – 3 p.m. We’re looking for business or personal sponsorships, volunteers, and of course marrow donor registrants.

For all you wonderful people who have already swabbed your cheek, please invite your friends and family. Volunteer. Spread the word.

We need all of your capable hands to make sure that everyone finds their perfect match.

Fireflies, Not Fireworks

6 Jul

At this point there is no popping, flashy news. No occasions of perfect match finds, engraftment announcements or DNA switches. Like my weekend, no fireworks.

But in these weeks of creeping recovery, there are smaller bursts of light – sparks that I have to remember are worthy of my focus.

It’s the Mennonite girls who volunteer here and always ask about me when I’m at the infusion center instead of their suppertime singing performances. It’s the wonderful friends and family who cram my weekends with stories from the outside. It’s the easy silence I can have with my caregiver mom because we’re finally all caught up. And it’s the mini improvements in making my very own blood components.

“If you keep putting up numbers like these – try to get that hemoglobin out of the eights – and can turn over two consecutive negative CMV tests, we may even send you home before Day 100,” said Julia today. She explained that I would still have to get a daily anti-viral IV infusion, but apparently my mom could suspend it from a wire hanger or something at home all the same.

The only other stipulation is that I would need an on-call driver (ahem, mom) who can hustle me to Rochester if I spike a fever. Not to worry, my mom is better than an ambulance. On a trip to Rochester seven years ago, she was speeding to the sound of sirens behind us. As she pulled to the shoulder she barked, “Take your hat off!”

Rolling down the window she pouted, “I’m sorry, officer – I’m just trying to get my daughter to Mayo for chemo this morning.” Works like a charm.

My biggest feat in the last week has been walking up the mammoth hill behind the Transplant House that leads to the historic Pill Hill. On the 4th of July I scaled this thing with breath to spare:

Definitely steeper than it looks.

Although the fireworks would begin in an hour, I was content staying home. Strolling past rows of antique houses, tiny blips of light in the grass caught my eye. The lawns were exploding with fireflies, their first night out on the town. As I continued, I came to appreciate that these small flares can be just as brilliant as the fireworks in the distance.

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