You gotta laugh a little, cry a little, until the clouds roll by a little

That's the glory of love. That is sacrifice. That is the face of a family going through the most severe and sad of circumstances, gracefully. Laughing and crying. Yes, there are ups and downs, and a few turn arounds along the way. We had high hopes that we'd sit around laughing and singing as we have before (of course in the tapestry that has now been woven), but the times have been largely passed by bathroom breaks, naptimes, and running around from here to there. For the caretakers, not a minute is spared. The ideal of our circumstances--which is not really "ideal" by any means--would be to fall into the same rhythm as we have before with perhaps new furniture (wheelchair) and wheezy devices (TPN). We're adaptable people, and continue to adapt. But, you could write the words exchanged these last days on a single double-ruled notebook paper; the interactions between family members have been brief, and that is hard. Even dinner conversations--of which Craig can't participate because the smells send him into nausealand--have been fairly quiet. The silence is deafening, and the tension palpable. Yet, there are still words said in silence--words of fatigue, sadness, perhaps even fear. They linger on the air like stale smoke, wondering when they'd either drift away or finally fall to the point of recognition. We have yet to really discuss the two elephants in the room. When in the same room, the two elephants stare at each other at a loss for words. Sometimes our Mom will start crying unexpectedly, and sometimes it's Craig although his is more of a flushed face and a slight redness of the eyes. We talk about it tangentially, cut an angle not quite deep enough to find the center of concern, so as not to send someone south too quickly. But, the effect of that is the proverbial stalemate (not without a lot of effort from us to move at least a pawn). It would appear that Craig is especially stuck since his process has evolved--or devolved--so rapidly. It's impossible to understand how one grapples with the sudden changes, loss and anticipatory grief (grieving for the past, present and future) under a year's progression as is the case of our Mom, but in a few months for Craig? Both are horrible realities. It's hard to imagine ANY time being enough to let go of the life you know.

As for the tears: As days go, yesterday was particularly brutal. I awoke early in the morning to coordinate our Mom's chemo scenario with the Duke team. Shortly after, Jill and I spoke and she did a hand-off with Mom. Mom has been crying a lot of late, to no surprise or discredit, and the phone call was no exception. When Mom spoke, I knew she was crying--the deep silence after greetings is usually a dead giveaway (either that or she's watching Law and Order!). I asked her how she was doing and she said not good. I asked her what was wrong. Her response cut to my bones like a blade. She said, "Erin, I'm scared."  I said, "Oh, Mom. I am too. I'm really, very scared and that's OK. It's OK to be afraid and to cry, to go through the process." We sat in silence for a spell, taking in the meaning of our sticcato conversation. We both exhaled, and I told her I was on the chemo beat--that we would have something up and running in no time. Days before she said she felt like she's walking around with a ticking time bomb in her head. Her fear and frustration that morning were testimonials to that statement.

Later in the afternoon, we tag-teamed a doctors appointment, since Craig was feeling pretty lousy and had been vomiting quite a bit these last few days and our Mom needed a dressing change. Imagine what it might be like to have two terminally ill cancer patients looked at simultaneously--one a mother staunchly protecting her son, another a son staunchly protecting his mother--multiply that by a million and you might have a sense of how difficult it was. Craig pinched back tears, his face visibly flushed as HIS nurse gave our Mom a hug. She had heard quite a bit about our Mom through Craig and yesterday was the first encounter in flesh. Mom cried when the nurse assessed Craig. Dad, Jill and I bit back tears all the while. It was a regular ping-pong match as to who would cry next. Craig was quite uncomfortable and restless throughout the visit. He's been having more pain, nausea, high blood pressure, jittery feelings, and panic attack sensations that usually occur when lying down. No position or relaxation techniques seem to assuage the situation, save that from another IV Ativan dose. He eventually paced to help calm the symptoms. While he was struggling, our Mom had a "situation" of her own. It seems the dressing from Stillwater was such that the tape quite literally took her skin like lint to a roller (through no fault of the nurse). So, her dressing change not only included flushing her pic lines, but dressing the new wound that had been established--a sister wound to the several other orphaned bruises, bumps and scrapes left behind by the Avastin and CPT-11 chemo regimen. Her skin is as fragile as baby's skin, but tears much more easily. Craig watched as his nurse attended to Mom and it visibly disturbed him, whether it was a flushed face or the hint of tears welling in his eyes. I can't imagine what it must be like to witness your mother's situation while battling your own--whether he's internalizing it and wondering what will happen to him.  

As for the clouds: When we returned home, I attended to Craig's IV meds as he listened to National Public Radio. On air was coverage of Ted Kennedy's brain tumor. I looked up to find Craig tearing up. With my spare hand, I patted his leg and he looked at me as he blinked back the tears. I asked him what he thought of all that is happening and he said he was "just tired". I asked if he wanted to talk about it and he said he was "just tired". It's worrisome because "just tired" seems to be a response to most invitations to talk--silly or serious. Yet, the tears in his eyes were an honest response to the contrary. We are all tired, and we are all sad. I can't imagine what added feelings he is having knowing that he is fighting something equally frightening and grim as a brain tumor. It's unfair beyond all words. For Mom, too. With every new broadcast and newsreel, old wounds are ripped open and we are reminded what we are battling.

Ted Kennedy's situation, sad and tragic in its own right, places quite the magnifying glass on our situation. With every treatment protocol he has access to, with every odds ratio and grim prospect that is discussed, it's as if we are reliving each detail of our Mom's process and prognosis. Not only are we reliving it, we get to second guess ourselves and wonder "have we found the latest and greatest technology? Did we leave a rock unturned?" When new doctors are revealed with new experimental approaches, you can't help but berate yourself for not going with the needle in the haystack. For Craig, too. We know wildly exciting science exists out there. It just doesn't fit with Mom and Craig's wildly aggressive cancers--at least not yet. Yet, we have found the best of the best in terms of established approaches, and the news media will pimp any prospect of hope without looking at the particular demographics, success ratios, etc. Still, despite the tears that may fall when watching, we may be the only family out there (extended family and friends included) "staying tuned" and taking notes on both GBM and kidney cancer newsfeeds with the hope that SOMETHING new and amazing will present itself for their particular situations. (Diane and Mom watched back to back specials on GBM and Renal Cancer, of all odds. Go figure!)

In any event, today marked the first day we'd all be together. Diane "the sunshine" rolled in late last night after a few midnight antics. The air mattress our Mom had been sleeping on sprung a leak at no fault of the owner, the air blower upper (aka, me) or the sleeping beauty who's been resting on it night after night. It just blew a seam. Jill and I had to scramble to relocate our Mom and, by default, our Dad. Then, Mother Mary couldn't use the restroom which only meant that the floodgates would likely open at the most inconvenient of hours. After watching a pot that would never boil, we turned into our respective homes at too late an hour. BUT, we awoke ready to take on a new day and by midday we were all six together at last.

I drove over to give my cat his IV fluids. For the first time since Craig's initial diagnosis a couple months ago, the sisters were together. In one stolen moment outside, we fell into a deep embrace--crying, sharing strength, supporting each other. Once upon a time, it was the four children locked in an embrace and we still are--it's just that one member of that embrace is now fighting for his life and the others are doing our best to help him. Embraces like those are at a premium, so is the "ideal" mentioned earlier.

As for the laughs: We experienced the ideal for a short while over lunch. Jill and I picked Craig up to go over to the other home. He joined us around the kitchen table, and even ate a bit of tuna salad! There was something about his eating tuna along with the rest of us that normalized the situation, even though he still had his TPN, could only eat a small amount, and our Mom was the star performer in "my little tea pot, short and stout...tip me over an pour me out" as she ate her sandwich. It was surreal, but also familiar and welcomed. Regardless of the extrinsic details, intrinsically this was the way it's been and what we hold dear. We joked around, shared stories, talked about all things non-cancer or "how are you doing" and, for the first time in recent memory, got Craig to laugh. It was as if cancer didn't matter--its voice wasn't loud enough. It played second fiddle to the family. The freedom from that was nice, though short-lived. Soon enough, Craig needed to lie down and our Mom had an accident in her depends. But, that hour set the tone for the day. At last, we could laugh, cry, and let the clouds roll by a little as a family. ~E