Update 6/27/2006
Indiana Weather
I recognize that the comparison comes across as flip, but as teb and I have learned over the past year, that doesn't make it any less true. Cancer's a lot like the saying about Indiana weather: "If you don't like it, wait a minute, and it'll change." I suspect that Indiana's not so unique in this regard and that every state has a similar saying. Hoosiers, incidentally, have two such sayings about their home state -- one for weather and one for time: "If you don't know what time it is in Indiana, wait a minute [or drive a mile], and it'll change." The latter may fall out of favor with our recent shift to daylight savings, and I'm not wed to either, so feel free to pick your favorite, or use your own like analogy, here. The point is that with cancer, things change and they change fast, and what's true one minute is not necessarily true the next.
It's been a while since teb's posted, and there's a lot to cover, so please bear with me. Let's start with this year's Law Ladies Trip. For some of you who have been with us for a while, you might remember that teb and her law school ladies (or as they now are called, with much affection and gratitude, the Teb's Troops Officers) have a contract requiring them to take a trip together once a year. (It's an actual written agreement. I've seen it.) This year, the ladies went to Jenny's lake house in Wisconsin, about five hours north of Indianapolis give or take, for an extended weekend. This was three weeks ago.
Teb made the trip just fine, but shortly after arriving, as fate would have it, her sacral pain (hips, lower back, tailbone, legs, etc.) escalated out of control. Even though the ladies, our hospice nurse David, and I made arrangements to get teb emergency pain meds shipped overnight to her in Wisconsin, the meds couldn't stop the pain, and teb and the rest of the ladies had to come home early. Having left on a Thursday afternoon, Teb got back late on a Saturday night. We moved her from the backseat of the car to our downstairs guest bedroom.
By Monday, June 12, the pain had still not abated, and teb had been confined to that bed since Saturday night, unable to sit, stand, or walk on account of the pain. We made arrangements to admit teb to the Ruth Lilly Hospice Ward at Methodist Hospital. And on Tuesday an ambulance came to our house to pick her up.
When choosing the downstairs guest bedroom for teb to rest upon her return from Wisconsin, we had the best intentions. Our thought was that she could avoid the stairs that lead to our upstairs "master" bedroom. For those that haven't been to our house, it's a compacted cape cod that squeezes every extra space out of its tiny frame. The downstairs bedroom sits off a small L shaped hallway that branches off the living room. In choosing the location, we did not consider, to teb's later dismay, how a stretcher and two EMTs could possibly fit teb through that little L hallway and out the front door. For a nearly unbearable half hour, the EMTs and I struggled with putting teb on a back board, taking her off it, putting her on a rolling stretcher, sitting her up in that stretcher, and pushing, pulling, lifting, tugging, sweating, and finally willing the awful contraption (with teb on it) through. The stretcher -- a mix of steel bars, wheels, pneumatic pumps, levers, and a rudimentary cot -- no doubt looked as gruesome to teb during all this as a medieval iron maiden, and probably felt worse.
But we got her out and got her admitted, and as soon as we could began pumping her full of morphine, dilautid, ativan, and haldol. Over the next few days, she took enough narcotics to kill an elephant, and still the pain would not subside. We had a neurosurgeon consult, and we elected to have a interthecal (I'm not spelling that right, but I don't care) pump installed in her abdomen that would pump morphine directly into her spinal column via an epideral catheter.
That didn't work either. We had a CT scan performed, which revealed a new spinal lesion, about 2 cms, at the L4/L5 vertebrae (lumbar spine). The tumor was very nearly compressing the nerves in the spinal column completely, which not only contributed to the pain, but also prevented the morphine delivered there via the recently implanted catheter from relieving any of that pain. In fact, the morphine was probably being trapped there, and the added pressure of the liquid volume inside the spinal column was making the pain worse.
So, on Monday afternoon, June 19, we had another surgery. The doctors removed a non-weight bearing vertebrae from teb's lumbar spine and plucked out the offending tumor. The surgery went off without a hitch. When her mom, dad, sister, and I saw her back in her room post-op, teb was awake, lucid, and not in pain for the first time in two weeks. As her mom, dad, and I left the hospital that evening to get some rest, we hoped that teb and her sister Val, who would stay with her that night, would get a much deserved good night's rest too.
That was not to be. As you might have guessed, overacheiver teb was very anxious to sit up in bed after having lain prone for weeks. And as the neurosurgeon had given her the greenlight to do so with no restrictions, she did that evening with relative ease, even moving out of bed to a nearby chair to sit for a moment. Unfortunately, the spinal tumors had their own ideas about what teb should be doing.
That night teb and her sister suffered through another painful ordeal and the hospice nurses, pharmacists, and doctors worked constantly pushing dilautid, morphine, ativan, and haldol in an effort to get teb comfortable again. By the time we arrived the following morning, teb was unconscious, cold and clammy, and sweating through her sheets every fifteen minutes.
And so began a very long and arduous process of scaling teb back off this IV pain medicine, which was rendering her comatose, and increasing her catheter pain and oral meds in order to return her to consciousness while at the same time alleviate her pain. But the IV meds weren't finished. Even after they were stopped, their metabolites remained behind, and made teb very agitated and confused. She would lash out at her mom, dad and me, not understanding where she was or why we wouldn't allow her to (1) play with scissors, (2) pull out her IVs, (3) walk to her "other room" to sleep, (4) plan the party she decided to host at the hospital, or (5) some combination of the other four. Being with teb during this time, when she looked and sounded like herself, but acted like anything but was the hardest part of our two week stay. Especially disconcerting to me was the fact that, on teb's first night in the hospital, she complained of a visual aura, which she had only seen one time before -- the day before we found out she had a brain tumor. I was, therefore, suspicious that it wasn't simply the drugs causing her confusion and agitation. Thankfully, I was wrong. We had a CT scan performed and it showed no further CNS disease.
Good news, the CT scan was negative. Bad news, we weren't out of the woods. We didn't know it yet though: By Saturday night, we had successfully weaned teb off the IV narcotics and titrated her oral meds and catheter successfully so that she was relatively comfortable. Not only that, but physical therapy came and teb, with their approval and assistance, sat up in bed, stood up, and walked behind a walker down the hall. And this time, her pain did not return when she got back into bed.
Instead, the following Sunday morning, (we're now up to yesterday, if you're counting) teb began to vomit. She had begun to complain of acid reflux and nausea the previous night, and by morning it had gotten worse. Her stomach was distended, tight, and she was in a lot of abdominal pain, which-- you guessed it -- needed to be treated with the very IV pain meds that we had just worked so hard to wean teb off. Worse, being unable to swallow her pain meds (she's now on unbelievable amounts of oral narcotics), her sacral pain started flaring up again too.
We learned that teb had a bowel obstruction. You'll recall that, for some time now, teb has not had control of her bowels. The pain meds she's on make her constipated, and the copious amounts of drugs she got over the past two weeks made things that much worse. We have been manually disimpacting teb to move stool out, and we continued to do so every day at the hospital. Still, stool was compacting in teb's small bowel, and you need only to imagine a clogged drain to have some idea as to why teb was nauseous and vomiting.
This time, however, the drugs were not the only culprit. You'll also recall that we had to stop treatment at NIH when we discovered a suspected metastasis and resulting intussusception in teb's small bowel. By way of a brief recap, intussusception is when the bowel folds back upon itself, usually causing an obstruction. (Picture those long balloons that clowns use to make balloon animals and imagine you're pushing your finger into one end of the balloon and you have the basic idea: your finger is the tumor, and the balloon folding back on itself is the intussusception.) The NIH scan showed only a minor intussusception, not enough to cause an obstruction, but enough to end treatment because of the risks of continuing should she develop an obstruction. We had another CT scan done yesterday that now showed multiple metastases and multiple intussusceptions in the bowel. These too, along with the constipation brought on by the pain meds, is what is quite literally backing up teb's plumbing.
We had a suction tube inserted down teb's nose and into her stomach last night (yes, it was as awful as it sounds). But it succeeded in pulling out a lot of fluid and relieved teb of her nausea, before -- with my having drifted off to sleep at 5 AM after another long night of trying to push IV drugs to catch up to teb's pain -- teb decided to pull out it out in another of her confused moments.
Which brings us to today. As of this evening, teb's comfortable and awake and mostly lucid again. We (teb, me, and our parents) met with social workers and doctors most of the day and talked about teb's current condition and prognosis. We have decided, for now, not to perform any further surgery on teb in an attempt to remove the bowel metastases or cure the intussusceptions. Speaking frankly, the risks of that reconstructive bowel surgery and the recovery period, even if successful, do not make much sense given the progression of the disease in her bones and elsewhere. Tonight, teb will have some things done to try to push out whatever stool remains in her bowel. And she will start on clear liquids and oral pain meds again. The intussusceptions may prove to be transient and resolve themselves once we clear that stool, allowing teb to keep down the liquids and, eventually, solid food for some period of time. Then again, they may not. As I finish writing this, the much-predicted hail storm that was supposed to hit my house tonight never came. Or, it being Indiana, it may be just waiting a minute. I simply don't know, and I'm not going to try to predict what will happen from here.
More importantly, we're going to do what we need to do to bring teb home from this much-too-long three-week hospital stay. We ask, but know we'll receive without asking, for your continued prayers and support as we face what lies ahead. I hope that teb will post again here and tell you all first hand about these events or her next trials and successes whatever they may be. I'm certain that, upon critiquing my post, she'll say I've spent far too much time sweating the details, altogether too much effort trying, and failing, to be witty, and she'll perhaps be worried that I ended on a downer. She would, of course, be right about the first two.
While this news is hard to read all at once (it's certainly painful to write), and probably leaves you rightfully concerned, you also must know by knowing teb as you do that she is not now, and never will be, defeated by this disease. Take comfort in that.
With much love, hope, and peace to you all.
Michael.
www.tebstroops.org
Jon_Trish on 06.27.06 @ 12:16 PM EST
