Archive | May, 2011

Planning the Welcome Party

31 May

My white blood cell count still hasn’t budged. So, yes, all of you optimistic souls who picked today or any of the days preceding as THE day, dry those tears. I’m glad some people chose those days; no optimism would have been a major bummer. Plus, you’re in good company. I’m already out (is this the NCAA tournament?) and so is one of my main oncologists. But no worries, to be waiting on Day +19 (today) is pathetically conventional. I have until Day +31 before my docs start to get worried about engraftment.

If you haven’t voted in the super trendy poll I started taking in my last blog post, you should really place your bet. (Plus, you admittedly have a bit of an upper hand because you already know two days that aren’t THE day).

Otherwise, my health has been relatively uneventful – so uneventful that I’m sleeping about eight hours during the day. I’m still dependent on blood transfusions, so once- or twice- daily IV Benadryl certainly isn’t helping my lids stay propped open. Plus I like to think that my body is working really hard to welcome this new bone marrow. Perhaps they’re working overtime to plan an elaborate “Welcome Home to Jenna” party, complete with “Yes, This Is Your Body, Isn’t It a Pretty Place to Live?” banners, a “Fun With Jenna and Donor’s DNA” party game, and of course some sort of accompanying red cocktail.

In other news, it’s pretty vacant up on the Peds BMT unit. Two people dashed out of here in the last week, leaving a 6-year-old boy and me to hold the fort down. Apparently we’re getting two newbies to fill the unit right back up this week.

3-year-old Elizabeth beat me out of here. She also regularly beat me at "swimming" across the lobby floor and time spent wearing laser lights shoes.

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Teamwork

28 May

By now I’m sure you’ve noticed it takes a hefty fleet to take care of me. And not just any fleet – a brilliantly competent team of doctors and nurses that handles the curveballs I throw almost every day. A team that is together on their toes. Because of this, I have the utmost faith in their care.

Why? Sure, it’s the Mayo Clinic. But what makes them so good? After nearly 5 weeks in the hospital, I can tell you a big part of it is their teamwork.

Every morning my hem/onc team visits, led by an experienced consultant and supported by a fellow, a few residents, nurse practitioners and my nurse. And they bring me on to the team, letting me in on the day’s problems and asking my opinion on solutions. They communicate to me how powerful my role on the team is. If I take responsibility for the simple, yet painfully monotonous daily tasks that patients often begin to forfeit – keep eating, do my four-times-daily mouth cares, keep on top of my mental care – I can accomplish far better outcomes.

And that’s just my hem/onc team on daily rounds. There’s a whole major league team back at the Mayo Clinic that is consulted and kept up-to-date of my stats, because every few weeks they rotate in and become my new team at the hospital. And if there’s a staph infection that’s a bit out of my hem/onc team’s expertise or I have leg pain they just can’t explain, without hesitation they bring in the infectious disease team or the neurology team and they become equal partners in my care. My doctors and nurses instinctively ask for each other’s advice and readily take it.

Many have suggested that Mayo Clinic is able to give this kind of synergetic care because its doctors work on salary instead of worrying about getting reimbursed for individual services. I’m no expert, but I don’t think the collaboration I see in my care could happen if they were paid on a fee-per-service basis.

And then there’s the nurses. Don’t even get me started on the nurses. If my nurse can’t jump at my beeping IV pole, another nurse jumps. I’ve lost all my privacy and any sense of body shame to my nurses, but I’ve been exposed to the most caring, think-ahead, comfort-first, confide-in-me caregivers the world has to give.

That’s why the last three days have left me feeling pretty good. I’ve kept the fevers pretty sparse but the naps pretty frequent. It’s tiring to grow bone marrow! My platelets keep hanging out too low – this morning they were at 7,000, so even rubbing my eye left me a nice lid bruise – but we’re working to bring those up. And I can fully walk again! Granted I’m a little wobbly, but when wasn’t I?

The “What Is The First Day That Jenna Is Going to Hit 500 Neutrophils?” Poll is flourishing on my room calendar. Apparently once my white blood cells start showing up in my morning blood work, that means my neutrophils are fast on their way. Once I’m at 500 for three days I can shift out of here and into the transplant house.

And so I ask you to lay down your bet. Here are the most popular answers from my doctors and nurses to the big question, “What Is The First Day That Jenna Is Going to Hit 500 Neutrophils?” 

It better not take longer than this 🙂 Please only vote once. Winners get full bragging rights!

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Walker Steps and 5K Strides

25 May

Day +13

It’s been small, but sturdy steps through each of these past days that end with my mom triumphantly crossing out another square date on my calendar. Each healthy X is one step closer to not paying attention so closely to what day it is.

I’m almost walking whole-footedly again. Two days ago I was hoping for my first steps. Yesterday I was hoping for functionality with my walker. Today I’m hoping I can get by mostly by hanging on to that IV pole. Tomorrow I hope these legs just straighten out for good. Sure, they’ve made determined progress in the physical therapy department, but they’re in my doghouse for another reason – my leg hair won’t fall out! If the hair on my head is going to fall out, it’s only fair that my leg hair, of all things, follows suit!

I even get a weightlifting belt for the outing. You can see the Peds BMT lobby. This is where I'm allowed to walk in addition to my room.

Balding for Reals

Speaking of hair, the many red nubbins that were clinging for life up top my head have now fallen out, leaving a sequence of red infrequent patches, but also exposing that my freckles continue even in high altitudes.

So now we’re lucky enough to just be dealing with normal bone marrow transplant maintenance stuff again – balancing my electrolytes and minerals, finding time in my day for a long-list of antibiotics and meds, keeping mouth sore pain at a minimum, and receiving near daily platelet and red blood cell transfusions (thank you, Red Cross!). I’d like to meet all the people I’m a conglomerate of a body. I imagine I have amassed quite the eclectic blood-producing assembly line by now.

Today we’re approaching that real waiting homestretch. First, we wait for any signs that by white blood cells are starting to grow. White blood cells are the only blood cells you can’t transfuse, so with mine sitting a big fat 0, any growth will be obvious. Before it shows in my numbers, we may first see signs in the form of my mouth sores healing and other such wonderful things.

Then, the big number we start to care about is neutrophils, a special type of white blood cell. (check out this info on measuring engraftment from Be The Match). Once I’ve hit 500 neutrophils for three days in the row, consider me a free woman from the hospital, that is if I’m not otherwise sick, can keep all my pills down, etc. Then it’s (hopefully) to the Gift of Life Transplant House I go until Day 100. I’ll get all sorts of daily transfusions outpatient at Mayo Clinic, plus there are several complications the docs watch for Day 30-100 that indicate the (ICK) Graft Versus Host Disease (GVHD), a reactive disease where your body realizes the donor cells are foreign, or vice versa. Let’s say that all together now, “Graft Versus Host Disease is gross. We don’t want it for Jenna.”

And there were also some big strides taken minus a walker by my supporters this weekend on my behalf during the Be The One Run® 5K Saturday around Lake Harriet in Minneapolis. The entire race raised nearly $145,000 for Be The Match. They braved what was reported by all as POURING (yes, worthy of capital letters) rain. Thank you so much to all those who formed teams or ran as an individual on my behalf.

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My dad’s wife Cindy formed a team with coworkers at Thomson Reuters that raised $4000! Thomson Reuters also sponsored mile number two. My company, Weber Shandwick, sponsored mile 1 to my  pleasant surprise.

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Padilla Speer Beardsley, the Minneapolis public relations firm where I interned after college, had a fabulous team and raised more than $1000, mostly in bake sale goods and coffee sales at the office (that sounds about right if I do harken back to my days of well-fed-ness at the office).

Team Jenna from Padilla Speer Beardsley included (not necessarily in this photo): Laudan Sakizadeh, Whitney Mares, Sarah Pierce, Catherine (Claeys) Scott, Tameka Davis, Nick Banovetz, Tiffany Jungers, Kurt Stafki and Kirsten Lesak-Greenberg

Jimmy’s brother Franz and sister Mary both ran. Franz hates running but signed up anyway.

I must point out that three of the people that ran in support of me ended up in the top 20. Need I remind you that I always came in first in the mile in middle and high school? (Yes, there were only 25 girls in our grade) Way to go, Jay, Kurt and Mary. I only surround myself with good people. I bet it all looked something like this.

And in the spirit, I can’t conclude without calling attention to Dr. Arndt’s husband, who this weekend shaved what I hear were long, luxurious locks as a fundraiser for the St. Baldrick’s Foundation, which funds children’s cancer research. He raised over $5,000 – so his title “the golden fleece” must be well earned.

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Birthday Weekend

23 May

“This calls for a birthday weekend,” my mom decided, considering my days are much shorter than a normal person’s day. That is, accounting for all the naps I need, the exponentially longer time it takes me and a team of nurses to do anything because of my gimp legs, random echocardiograms, blood transfusions, drop-by physical therapy, visiting nutritionists – you get the drift.

Morning Birthday Instigators

So birthday weekend it was indeed. To kick things off, I was awakened by a very festive version of my Mayo Cavalry. I assume the pediatrics crew isn’t as well-oiled when it comes to celebrating the big 2-5 among its patients, but you would never have known. They totally pulled it off. Plus I’m a sucker for cone-shaped hats and cupcakes.

Fresh-off-finals-but-now-cramming-for-medical-boards Jimmy couldn’t resist, breaking his study schedule for an early morning drive from Chicago to make a surprise visit. Any sour feelings, tension, anxiety, you name it, peeled right off when he was here. He sat through my echocardiogram, which the techs had hauled right up to my room, and of course offered many inappropriate faces and other charades at the techs’ backs. We enjoyed a romantic lunch in bed. I tried to teach him new medical terms.

Hospital Food in Hospital Bed

Olivia had more hair than me.

Thankfully Jimmy’s departure was eased knowing my best friend Melissa, her husband Jordan and their brand new baby girl Olivia were waiting in the lobby for their visit. I had last seen Melissa when I visited them in Jacksonville, where Jordan is stationed with the Navy. They managed to swing by on their way to their new station in Washington State. Melissa and I have been naming our babies (and groomsmen, and wedding venues, and jobs we’ll have) since developing an extreme, complex version of the game MASH. It’s gratifying to see how those columns are finally shaping for both of us, although she sure does have far more categories crossed off than I do.

Yesterday I spent the entire day with my dad, giving my mom the opportunity to attend my cousin Andrew’s high school graduation (congrats, Andrew!). My dad used every bit of his motherly flair with this girl-with-no-use of her-dumpy-legs. He already visits nearly every night after work for a few hours, making his total day commute something like 3+ hours, and he’s even more of a workaholic than me. It was good to spend a good hunk of time with him.

Kyley and Rachel visit

Rounding out my birthday weekend visitors were Kyley and Rachel, friends I’ve had since high school and Katie and Mary -Katie was the only Minnesota girl (even though she’s a Badger) out in DC at Powell Tate and Mary and I worked together quite a bit when I worked at the Weber Shandwick office in Minneapolis. Between the four of them, we easily yakked away for hours. I even have a trophy mouthsore today to prove it.

Mary and Katie Visit

If there was a prize for “Best Birthday Confined to a Hospital Room (Let’s Be Real, Hospital Bed)”, I think I took the cake.

My legs are slowly but surely getting better. Yesterday I stood for two, then three minutes using a walker. And I just took physical therapy break and walked with a walker! I’m a little wobbly, which could be taken advantage of by certain people (ahem), but I’m well on my way to that graceful stride. My staph infection has been treated, but I’m still on the antibiotics for it. My new problem is mouthsores and bleeding from low platelets. Mouthsores that are back with a vengeance. Bleeding that won’t stop. So, we’re trying to keep the pain medicine just right and I’m trying to keep eating to keep that food tube out. And we’re trying to talk a fine line between giving my enough platelets but only when needed, as their effectiveness can ware off once you’ve had too many transfusions. They’re hoping my blood counts may start coming up on their own by late this week. Fingers crossed.

I want to sincerely thank all of you for bombarding me with cards, Facebook posts and messages, notes on my blog, gifts, and other messages for my birthday. Your overwhelming support and unrelentless care for my wellbeing enthuses me, motivates me, and is invaluable to reference when I’m feeling in the gutter. Thank you for reading my Redhead Report, even when I take what I’m sure are annoying breaks in my writing (because I’m not feeling well, have a lot of various appointments, don’t feel like dealing with the Mayo Internet access wall, or need a long nap). I truly value your loyal readership.

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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.

Day +4

16 May

Today was not a good day. I spiked a fairly serious and tenacious fever that earned me some sock-it-to-ya antibiotics. They drew blood cultures this morning to diagnose the root of my hot chills, but until we receive a diagnosis they’re treating it preemptively with a suite of antibiotics that cover all the bases. I have muscle aches in my legs so tight that I can’t walk, even with a walker. I’ve developed mouthsores that have earned me my very own morphine pump. I’m getting blood transfusions daily. I’ve had so much IV Benadryl over the past few days that I can stay awake through it. My hair is starting to fall out.

Oh yeah, this is chemo. It just took a while for my body to realize it ingested a ton of it.

The good news is that I’m still able to eat, which is apparently some sort of feat. Most are on food tubes by this point, so eating ice cream draws veritable applause around here.

So now we wait. We wait for my brand new bone marrow to engraft and fend off fevers that are taking advantage of my obsolete immune system meanwhile. Engraftment typically takes two to three weeks, but it’s anyone’s guess. I’m having a little fun with it by starting a pool with my doctors and nurses.

In other news, my brother Jack graduated from the University of Minnesota yesterday. No more “Jenna, can you edit this one last paper for me?” Whew. He landed a job with AmeriCorps VISTA in a St. Paul school. This is one beaming sister.

Jack and Dad on Graduation Day

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Transplant Day

12 May

Well we pulled an all-nighter, very uncharacteristic of me. The bone marrow minus its red blood cells arrived sharply at 4 a.m. after a delayed 9 p.m. flight. The nurses hooked me up to all sorts of radars, monitors and maybe even GPS. Who knows.

After a few pre-meds, they let the bone marrow start dripping. Drip, drip, like a blood transfusion. Much to my dad’s pleasure, we used the occasion for a Glee marathon. Fighting through the IV Benadryl to squint through my favorite scene, I eventually resigned and just slept.

I could feel my heart heavy with the new marrow, beating faster to soak it in. My blood pressure rose to accommodate, but otherwise the transplant was the anti-climactic success we were aiming for.

Because of the delay last night, today is now my official Transplant Day. Tomorrow is Day +1, when the waiting game begins. Waiting for engraftment, for white blood cells to start growing and multiplying to form my brand new immune system. This usually takes 2-3 weeks, all time I have to spend tied to my IV pole in my hospital room. We’ll hope for boring days because boring days mean complications are at bay.

But as I was so enthusiastically reminded last night by my costume-designer friend Andi and her Children’s Theater Cast of Annie, those sunny tomorrows are only a day away. (you have to listen)