Rarities and B-sides

I think we’ve had it up to here with the “this is an extremely rare case”, or “we just don’t see this very often” junk. Let’s look back:

The five of us (plus Diane’s friend) were awaiting news from mom's neurosurgeon to let us know that things went well, and there were no surprises — the sort of news that one bites their lip to in anticipation. Nope. Instead, the neurosurgeon discussed what an interesting and rare case her tumor was. If it wasn’t for his awkward bedside manner, you’d almost think he took glee in describing the very strange gooey consistency of the tumor, noting that the slimy greyness that was the cancer surely indicted her tumor was growing faster than its own blood supply. Plus, it had invaded her right ventricle (the cerebral spinal fluid filled space within the brain). This was superdeeduper rare and he used a superdeeduper rare patchwork technique, so that the CSF wouldn’t create a geyser effect. He probably was disappointed when we didn’t hi-5 him for his remarkable talent. (This is not to say he isn't an extremely skilled neurosurgeon. We just weren’t too keen on marveling over the case study that was our mom).

The rare-train didn’t stop there. It kept roaring on through her near MONTH long stay in the hospital. Whereas most brain tumor patients receive surgery, recover quickly and are discharged 2-3 days later to begin treatment, her electrolytes were out of whack from her super cool ventricle invading tumor. She couldn’t recognize us for at least 48 hours, had difficulty with speech and cognition, trouble walking, you name it. Sodium and potassium were drastically off-kilter and no matter what they did -- i.e. banana pushing, water cutting -- the electrolytes were not rebounding quite like the doctors had hoped.  Another ‘huh’ moment. Two and a half weeks would pass before she was moved to an in-patient rehabilitation facility, and nearly a month went by before she could head home (several weeks after her ‘expected’ discharge date).

But, it gets better. Her FIRST MRI after a month of radiation and standard of care chemo treatments showed tumor growth. It took a trip to Duke to realize she didn’t qualify for a clinical trial since her tumor came back so quickly. Only 10% or so of her cohorts see tumor growth this quickly, apparently -- another hi-5 moment clearly lost. We knew our mom was top tier, but come on, do you have to prove it in EVERYTHING?? The doctors concluded that hers was an abnormally aggressive cancer.  But fear not, they had a plan.

Fast forward to February:  entering from stage left, super rare and aggressive form of a typically non-aggressive cancer, Chromophobe Renal Cell Carcinoma. The doctors were quite surprised to find that the cancer they had assured almost never recurs/spreads had in fact recurred and spread throughout his abdomen in an order of 6 short months. Craig's cancer is pretty atypical and the doctors here said they had not seen this happen very often -- a head scratcher for sure.

We're not through yet. Our mom’s latest MRI in early April indicated probable tumor enhancement. I spoke with the Duke team overseeing her treatment and the doctor said -- wait for it  -- it’s very rare to see tumor enhancement in the first cycle of Avastin/CPT-11. Guess what, she was in her first cycle of Avastin/CPT-11! Another point for the “huh, that’s strange” team.

Must round off these oddities to an even number or “huh” moment number 6. Craig’s tumors haven’t even flinched at his various chemos, at least not yet. (There’s always hope and always a fight). He’s been in the hospital for the last week and the doctors were positively stumped as to what could be causing his fever. The sisters and Emily landed on the “cancer is the culprit” idea pretty quickly, but the docs wanted to exhaust all other possibilities. We learned today that they even have a name for it:  “tumor fever” or “fever of unknown origin”. Evidently, “tumor fever” is fairly rare. Big surprise. If it’s common, it ain’t Lawler.

Would love to hear for once that what the doctors are seeing -- either for our mom or for Craig -- is par for course, or, in other words, expected. If only we'd hear that their respective treatments were working, and everyone is doing well, at least for a moment. Instead, our mom has been fast-tracked in terms of losing certain motor functions and mobility, and in a blink of an eye, it seems Craig has spent more time in the hospital than at home over the last two months. All this has happened so fast that the notion of returning to favorite vacation spots, or taking the family to some respite place away from hospitals and the like seems highly unlikely. It would be great to actually send our mom to England or Southern France as we had hoped, or send Craig to Vietnam so he could snack on exotic food. Those ideas seem as practical as going to the moon. Not complaining or throwing a pity party, it’s just the reality.

It’s the spring and folks are busy planning summer vacations and fulfilling dreams of visiting exotic places, eating decadent foods, experiencing different cultures, or simply slipping away to a relaxing vacation home or familiar travel destination. For us, dreams have been scaled back to the small hope that we can somehow bring our mom and Craig together, and perhaps have a day where we don’t have to whisk someone to the hospital. I don’t think we care where we are anymore, simply that we are together. The greatest vacation of all would be time away from these ‘rarities’ and this constant drip of bad news. Instead, we write, we laugh, we talk through this as we can, and we somehow bring a vacation to our mom and Craig in the form of supportive care, quirky distraction and being together. -- E