Archive | June, 2011

Creamed Corn

28 Jun

I got out of the hospital this morning after an uneventful day and evening yesterday. I was hospitalized for pains that turned out not to be a big deal. Better to be precautionary these days. I landed the same room of the transplant unit with the same beeping IV pole, the same mid-night and early morning wake-ups, the same unwilling menu, but the same smashing team of doctors and nurses (minus Dr. Arndt, plus Dr. Rodriguez, that is). My mom and I were so grateful to enjoy the sunshine-y day today in the outdoors, not behind the thick pane of our window.

Only at the Transplant House: Earlier this week I walked by my ol’ neighbor Joe on the way out of my room. He had just returned from the hospital earlier that morning after receiving a stem cell transplant.

“You smell me?” he asked.

I leaned in and sniffed, but I didn’t have to inhale much. “Yeah. What is that?” I replied.

“Smells like creamed corn, eh?”

I considered, not wanting to admit that the scent was uncannily similar to my Aunt Sue’s renowned Thanksgiving creamed corn. “Yeah, that’s exactly it. What’s the story, Joe?”

Apparently when stem cell transplant recipients are treated with stem cells harvested from their own body to treat a disease (don’t ask me how that works), they smell like creamed corn for a few days after their transplant. It has something to do with the preservatives they use to store the cells. 

We both kept walking in opposite directions and sure enough, there was a trail of Del Monte-esque canned cream corn wafting down the hallway.

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“Honey, That Is A Girl”

23 Jun

Well look who’s back. Sorry for my hiatus but with Jimmy visiting this past week I don’t think I could concentrate long enough to write a blog post. I’m sure he’s still basking in his self-assumed “I’m the boss” role as caregiver and Dr. Arndt’s comment at an appointment last week that he’s “probably better medicine than we could provide here.” That one sunk into his head pretty deeply.

The biggest health-related news to report is that the Mayo team caught CMV trying to take advantage of my beautiful new immune system. CMV is a virus most of us were exposed to when we were little, but never knew it because it probably manifested as a cold. Both my donor and I were positive for it, so the docs knew to look out for it. For people with itty-bitty immune systems like me, CMV can wreak some pretty serious havoc. The good news is that they now have such sophisticated blood work tests for CMV that they catch and treat it before symptoms appear, which is good, because the symptoms don’t sound all that great. So now I have to go back to the hospital twice a day to receive an anti-viral IV infusion for at least a few weeks. No big deal considering the alternative.

Oh, and did I mention I’m sprouting neutrophils like it’s nobody’s business? I’m now almost to 2,500. Just waiting for the rest of that immune system to prop itself up. I’ve had trouble jumping on the platelet-growing train, but at least I’m holding in the 20s. That means I’m at least making some on my own and haven’t needed a transfusion, just not nearly enough to start my usual acrobatics or wrestling.

My kidneys have also taken a pretty serious hit with all these knock-‘em-dead medications (plus I didn’t exactly go into this with shiny new chemo-free kidneys), so I’m trying to help them by drinking as much as I imagine I would if I was walking across the Sahara.

As for Jimmy, his favorite new development is that kids are now afraid of me. I’d be scared too passing someone with a bald head, glasses and a lower face-covering mask. Walking on the other side of your mom, staring and pointing, and whispering to your dad after I walk by are totally normal reactions, kids. But Jimmy’s favorite? It went something like this:

After several seconds of staring: “Mom, why is there a boy in the girls bathroom?”

Whispers, no eye contact with me: “Honey, that is a girl.”

Pensively: “Then why doesn’t she have any hair?”

I proceed to explain to the girl that I used to have long red hair and it will grow back. She didn’t believe me.

Otherwise, Jimmy and I did everything you would expect a retired couple to do:

We drank Ensure together

He filled my pill box

We rocked in rocking chairs reading, watching traffic, and talking for hours

Of course he had most of the older women here – and men, for that matter – wrapped around his finger by the time he left. I must admit he was a wonderful caregiver, even if he insisted I call him Student Doctor Vancura. He’s earned it by now.

Me and Jimmy

P.S. I finally updated photos of the Gift of Life Transplant House to my post We Made It (Four Blocks) if you want to check them out.

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Plain Old Good News

16 Jun

Today offered a huge sigh of relief. The results of my Day +30 bone marrow biopsy are back and all three measures that determine if my transplant worked have proven it did!

First, the pathologist sees no blasts and no traces of MDS. Second, my bone marrow is 100% my donor’s, based on DNA. Apparently, even 98% or 99% her DNA would have had the doctors worried, so good thing this wasn’t an algebra test. Who am I kidding – that would have landed me in the 70s or 80s for sure.

I sort of jumped the gun with this information on Tuesday when those two results came back, telling people here it proved my bone marrow transplant worked, only to find out from Julia that the third measure – chromosomal abnormalities – was the biggest piece of the puzzle.

Today Dr. Kahn called and said the biopsy showed no chromosomal abnormalities in my marrow, meaning the cells with the chromosomes that were all out of whack before that caused the MDS were not there, killed by my large doses of chemotherapy.  So I’m not a Teenage Mutant Ninja Turtle, as Jimmy would have called me. Whew. 

The news couldn’t be better. Granted, I have to get several other biopsies down the line that could show changing results – the first on Day +100 – but things are looking up. Exhale.

P.S.  My computer is rejecting my USB port. I promise I’ll get those photos of the Transplant House up soon!

 

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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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day 35 in captivity

5 Jun

Disclaimer:  This in NOT Jenna writing this new report (lower your expectations) it’s her mom, Lisa.

Jenna asked if I would update you all, so I will give you a quick review.   First the very GOOD NEWS!  Jenna has neutrophils!  Early this morning lab tests showed she had 350, later this afternoon they are up to 650!   Now if she can keep putting up numbers like these, we will be talking discharge.

One potential problem for getting out of here is that Jenna has been extremely tired and feeling very crummy for about 5 days now.  She has no energy and no appetite.  It’s not for lack of effort that she isn’t eating, but today the doctors suggested  Marinol she took one dose and it seems to have back fired.   Jenna is even more tired and dizzy thus she doesn’t feel like eating.  She could do a commercial for  Scared Straight or “this is your brain on drugs”.  She is not enjoying it.

So she hasn’t been able to celebrate or appreciate the  great news of her high neutrophil count.  Crap.

That’s the latest from St. Mary’s Hospital in Rochester.  I am sure Jenna will be back soon, and she will have so much more to say.

Thanks to everybody for all the email, facebook notes, prayers, cards, offers to visit etc.  It is much appreciated by Jenna’s family.

Lisa Langer