It’s been a while since I’ve updated and quite a bit has happened. This experience the past few weeks has really bankrupted us… physically and emotionally. I know that I’m exhausted and can only imagine how tired Lauren is. SO tired. More than tired.
Check out the hardware!
Out with the old (the broken plate and several bone screws)
And in with the new (longer screws and pins)
The revision surgery to install a new plate in Lauren’s leg went well (April 11th). Lauren seems to have more mobility in that leg now, including a tiny bit of dorsiflexion (the ability to lift her foot up). That’s a big HURRAH! as Lauren has not been able to lift her left foot at all since the big surgery last November. “Foot drop” (http://en.wikipedia.org/wiki/Foot_drop) is a risk with limb salvage surgery, a procedure that removes cancer (most often bone and soft tissue tumors), avoids amputation, and preserves appearance and function of the limb as much as possible. Lauren’s primary orthopedic surgeon (rock-n-roll star Dr. Chappie Conrad) helped pioneer limb salvage surgery in the United States and established the bone tissue bank in Seattle. It would be fair to say that Dr. Chappie saved Lauren’s left leg.
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| L's AFO is purple/blue with stars |
Walking is more difficult without full foot sensation. That said, seeing even a small amount of dorsiflexion is important because the nerve takes up to 6 months to heal; after that window has closed, recovery of the nerve is less promising and a normal walking gait is not possible. (Try to walk without lifting the foot and you’ll see what I mean.) Lauren is at the end of month 5 in that 6 month window, so the dorsiflexion is super exciting news! Keep your fingers crossed for continued progress in the foot-lifting department.
I will say that this latest surgery meant more pain for Lauren. It’s more physical therapy—starting over from the beginning. After ALL that hard work? We rant and rave, we make faces, get angry, sulk, and cry. Yup, this whole “do over” surgery and recovery to fix the broken plate makes me want to cry. Then I think how much stronger my daughter is than I am... and I don’t have the physical pain. Speaking of that, Lauren is back on long- and fast-acting morphine, instead of the occasional breakthrough oxycodone. My girl has a pretty high pain tolerance, so that’s saying something right there. *sigh.
Pain isn’t just the bodily type, but rather, it’s written there. Would it be too much to call all of “this” depression or simply the blues? Lauren’s scar that was nearly healed for a summer of swimming is back to a red, raw, fresh wound; the doctors say she can’t swim until all of the scabs are gone. Drag. And as shallow and vain as it might seem, I think the new wound makes her all the more self-conscious. Up and beyond the typical self-consciousness of a middle-schooler. With cancer. With no hair. With a limp and two leg braces. With a giant red zipline down a once perfect leg. Her original incision is now several inches longer to accommodate the new hardware and plate (longer, thicker, and wider). I’m making a big deal of this, perhaps. She’s lucky to be alive. She’s lucky to be alive. And she's lucky to have her leg. I understand this deep within the logical left side of my brain. Perhaps I’m projecting, hearing her as I do when she cries in the shower, looking down at her water glassed gams, imagining what she’s thinking when she can’t even tell me. This new scar. Our home is Hawaii. Our home in Hawaii where skin isn’t hiding for most of the year under long pants. Lauren lives in shorts, small skirts, and bathing suits most of the year. The pain of this year won’t end when we fly away from Seattle. Maybe it’s not meant to.
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| Dr. Douglas Hawkins |
After the surgery on the 11th, Lauren was plagued with about 10 days of intermittent fever. They never did figure it out. Temperatures in the red zone: 101, 103, 102, 103, 103. Mostly 103.something. A helpful nurse printed out all of the fevers for me in a seven day stretch, even graphing it. Two pages of single-spaced, tiny line item temperatures. A line graph with sharp peaking spikes resembling a needle reading seismograph chart of the San Andreas Fault. The nurse was so proud of her work. I, on the other hand, felt dizzy and really, really scared. The doctors futzed around with different thoughts about the fevers. We tried Tylenol, the incentive spirometer, cold compresses, ice packs under the arms, chanting. See, this could be a HUGE problem after chemo when Lauren’s immune system tanks. And this scenario just happened to one of Lauren’s best friends here, also a cancer patient. She had an infection, but was taking IV antibiotics. Then her ANC dropped and this sweet young gal ended up in the emergency room with a temperature of 106.4. She was transferred to the ICU and was treated successfully, but she could have died. Freaks me out. She could have been my own child. She could have been any of the kids we know and love here. Just… BOOM. I went that night and stood awhile with her mom after Lauren was asleep. We were already in the SCCA cancer wing; the nurses there were also worried about our friend. They kept a special eye on Lauren while I was out. When I returned to our hospital room, I couldn’t sleep. I stayed vigil another hour or so until the sun peeked through the blinds. Things seem less desperate in the daylight hours.
We were delayed with chemo. The docs wouldn’t start it without a better understanding of the fevers. But Lauren’s fever, while scary and dangerous, sure wasn’t 106.4. The docs referred us to the infectious diseases team. They introduced themselves to Lauren this way: “We’re like the people on that TV show ‘House,’ but we’re nicer.” Ha! After all the questions and tests and “team consultations” they decided it might be the antibiotic (Piperacillin. Can you believe?) and a drug-related fever. Sure enough, they stopped it and the fever disappeared. Still not 100% sure. We’re hoping that she doesn’t have a low-level infection. If so, we’ll likely spike a fever when her ANC drops to zero. Fingers crossed about so many things.
We’re glad we’re back on chemo, albeit 3 plus weeks late. It’s such a strange thing for which to be glad—checking into the hospital, filling the body with toxic chemicals, lying around all day waiting. Waiting to throw up… or not. Waiting for visitors. Waiting for meds to kick in. Waiting for time to pass. Waiting for a nurse shift change. Waiting for the day to wink its eyes closed. And waiting for not a promise, but a mere possibility or hint of a cancer-free future.
It’s 11:05pm and I’ve missed Starbuck’s downstairs by 5 minutes flat. I was going to meet my friend whose lovely daughter is no longer 106.4. We were going to go catch a late night coffee or tea, sit across from each other and commiserate. She knows me better than some of my own relatives now because she knows so intimately what I’m going through. We share a similar experience here as caretakers and cancer moms. It’s like we have a secret handshake now to a club no one wanted to join in the first place. We missed our mini date because Lauren started to feel sick.
Best not to wait for nausea to become more than a whisper. Headache often leads to hiccups, then tummy pain, and then the Pepto-Bismol pink emesis bucket. Wet washcloths. A sleepless night. We have avoided all that Linda Blair ugliness this time. Not sure if it was the IV Benadryl or a surprise visit from Ross, aka Nurse Beefcake, one of Lauren’s favorite (and few) male nurses.
So, I’ve missed late night caffeine with my friend. I’ve got a fresh but not-as-fun-to-drink-alone 12-pack of Coke Zero here in the hospital room. For now I’ll stick with that popular theme: Waiting for chemo to start again in a half hour. Waiting to read a bit of vampire fluff. Because I’m waiting for the two Advil I just swallowed to do their job. Waiting for a new day tomorrow. Waiting and wondering…
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