Your mother’s sneezing??

I’m staring at mom as I type.   She’s sleeping in one of Brelle’s nice lounge chairs, not five feet away.  I don’t feel comfortable taking my eyes off her these days, especially after yesterday.  In fact, this is her first time to be home since about 12:30 yesterday afternoon, when she left for her 1:00 p.m. appointment with a nutritionist.  How long ago it seems. 

Yesterday will go down as one of the scariest days of my life – of all of our lives.  Mom awoke a little groggier than usual, and was dragging her left leg considerably.  But, given that she had just started a new chemo regimen, we chalked it up to simply newby’s fatigue.  She seemed fine during lunch, and spoke a bit during the 30 minute ride to the University of Colorado Hospital.  She seemed a bit tired during her hour long appointment with the nutritionist, but again, her behavior – sans a little left-legged restlessness -- was not unusual.  

After her appointment on the second floor, we wheeled her to the first floor to join Craig for his weekly consultation with Dr. Flaig, where we’d also learn the results of his latest CT scan.  Mercifully, Craig finally received some good news.  It seems the chemo is having some effect in slowing the tumor’s growth.  Most of his tumors have shrunk slightly, with only one growing, but only by a few millimeters.  We’re hoping Sorafenib will continue to strengthen as time progresses.  In any event, we feel like we’ve turned a corner in Craig’s treatment.  And it was great we (including Emily) could all be there with him in support. 

Just after finishing with C’s appointment, Diane and I wheeled mom to the public bathroom just next to C’s cancer unit.  Erin eventually joined us after trying to get C’s prescriptions filled.  We transferred mom from the wheelchair to the toilet, and vice versa, and then wheeled her to the sink to wash her hands.  I was standing behind her, and E was helping her with the soap and water when all of a sudden, her left arm started twitching like she wanted to move it from the counter.  Her twitch soon progressed into a convulsion, with her left arm contorted into a bicep flex, and her head awkwardly cocked to the left and facing the adjacent wall.  In a turn of a second, mom was seizing. 

Almost immediately, I ran out the bathroom door and hooked left towards Craig’s cancer unit.  I ran inside, mumbled to Emily that mom was seizing, and then proceeded to the front desk for help.  I told the assistant that mom was seizing and asked that he alert Jennifer Bryan, Dr. Flaig’s nurse, for help.   Annoyed, the helpful assistant replied “your mom’s sneezing??”  Quick, someone get some Kleenex and Claritin stat…and make sure it’s the D kind! (Good Lord) At the same time, another nurse overheard and had started towards the back to get Jennifer.  Frustrated by helper bee, I broke protocol and entered the hall where I saw Jennifer gathering her things.  I then ran back into the main corridor to join E and D.  By that time, mom was blue and in full body convulsions.   D took her legs, and E and I grabbed her shoulders, and on a count of three, we hoisted her then limp body from the wheelchair and onto the ground.  Jennifer was behind us with a pillow, and within seconds, Craig’s doctor, along with his entire cancer team, was there assessing mom’s vitals.  I remember telling them that she wasn’t breathing, and just as I did, her color changed from blue to ash-gray.  It was then I thought we’d lose her, and in the most ironic of circumstances.. 

Craig’s team – already equipped with oxygen and a defibrillator (as a precautionary measure) – took over while the three of us held her hand.  Soon after we had her on the ground, I got up and headed for dad, who was sitting down.  Dad had been waiting for us out in the lobby, and was visibly shocked by the scene.  I knelt down, put my arm around him and told him she’d be okay.  For a few moments, we both sat there watching as mom’s body continued to twitch.  I quickly rejoined E and D and continued to comfort mom as the team continued to work.  Slowly, her body started to calm, with her color returning to a chalky red.  By the time the paramedics arrived – we waited 15 minutes for the ambulance to drive her next door (cheers to protocol!) – she was responding to verbal cues.

D and I walked to the ER while dad joined mom in the ambulance.  E stayed behind to tell Craig, who, at the time, was having an ultrasound performed on his bladder to see if a tumor was preventing his bladder from emptying completely.  E quickly joined D, dad, and I in mom’s ER room, just as the paramedics were transferring mom to the ER docs for care.  Craig and Emily arrived ten minutes later; C looked visibly upset.  He stood behind mom’s curtain for a few moments and then proceeded gingerly into her line of sight. By then, she was awake, though still a bit out of it.  I stood beside him with my arm softly on his back, while D and E held her hand.  Soon, C and I joined Erin and D at her side, and held her hand while she cried. I placed my hand on Craig’s shoulder and the four of us stood there teary-eyed, looking at each other in disbelief over what had just occurred.  Remarkably, Emily was with us through it all, and at one point, I walked over and put my arm around her as she cried along with us.

The docs attribute her seizure to a combination of things, including a UTI, her recent decrease in steroids, and an introduction of Ritalin.  Though they were going to discharge her last night, we staged a sit in and insisted she stay overnight for observation (and so that we could prepare ourselves for mom’s arrival, including securing a medical bed).  I spent the better part of the afternoon tracking down medical supply companies in order for a bed to be delivered this evening.  (She was discharged at 6 p.m.; we’re still waiting on the bed!) 

The doctors warned us that she’ll be groggy and “not herself” for the next few days as she recovers from this event, and gets used to her new anti-seizure med.  The next 24-48 hours will be touch-in-go in terms of having another seizure.  I hope yesterday was a freak occurrence, and that she’ll never have to endure something like that again.  I hope I never again see my mother blue, not breathing, and frothing at the mouth.  I hope I never have to whisper words of comfort to my dad while seeing my sisters circled around my mom.   I hope I never see my brother so distraught.  And I hope I never feel so helpless. 

Twice now, her condition has selfishly pushed her to the edge.  Thankfully, she’s had other ideas.  She’s a fighter; she always has been.  And we all have that fight in us.  I remember glancing at my sisters as we sat calmly next to my mother as she struggled to breathe.  I thought how strange it was that we weren’t crying – at least not then.  We responded just as she taught us.  We were by her side, and were going to be whatever the outcome.  

We’re now watching t.v.  She’s coming back to us, slowly but surely.  It’s nice to hear her voice after so long.  I told her not too long ago that I’m glad she’s here.  Her response:  me too.  -- J

Finally, the moment you've all been waiting for...

Yes, I am still here :)) Writing has become a SMIDGE redundant lately, seein' as my two sidekicks sometimes post two or three times a day. So, I sits and I waits for little morsels of comedy or tragedy to save for my posts; just so I can say to the sisters...face, runts, face! (Lawler's ain't nuthin' if not competitive :)) Here are some of the moments I've stuck in my treasure box:

 I was sitting and watching tv with mom when the news casters started talking about the horrors of aging, blah, blah, blah.  I asked her, without really thinking, if she was afraid of getting old.  "No," she said. "Because it means I've survived." And I worry about stretchmarks.

Mom tends to be a little cantankerous after she's walked to the breakfast table.  After griping out my Dad for asking her if she liked being in Denver, I asked her half-jokingly, "Are you fixin' to be hateful today?"  She sat back, squared her shoulders, and said in a VEry loud, sassy-Mary voice, "Is that an invitation?"  We all started cracking up.  I turned to Jill and said, "I think I've just been called out! It's go-time mama!"  She sat there, fists a-ready, eyes a-twinklin'.  Sassy Mary strikes again.

D

My (long awaited) take

I’m typing as mom watches the Price is Right.  She’s sipping a cup of decaf and waiting for Erin to arrive for our morning/afternoon transport to Craig.  I’ve been meaning to write for the past six days but haven’t found the time.  Since arriving in Denver, it’s been non-stop fiddling.  We’ve etched out the slightest shadow of a routine, but it’s hardly permanent.  We’re constantly shifting and adjusting -- sometimes awkwardly – to our new situation.  For some reason, life has grown more complicated with all of us here.  Whereas before, mom and Craig had only themselves to consider (as did we, in terms of caretaking),  they now have to think about how to manage their day in order to a) see each other and b) be awake for it – which is not an easy feat. 

Our reunions, when they happen, are often quiet affairs.  Conversations trend on the brief, and though we had a good day Saturday (before Memorial Day), it seems that may have been an outlier in an otherwise steady trajectory of staring competitions -- sans the crap-talk that usually comes along with it.  Still, nothing compares to having the six of us together, even if the time between seems a bit quiet. 

As D and E have said, getting to last Friday took some careful maneuvering, but we made it, thanks to the generosity of two strangers-come-friends – Brelle and Leigh.  Brelle offered her house while Leigh offered her time in arranging mom and dad’s wings. (It’s been said, but worth noting again:  what you have done for our family goes without saying.  You made this possible!  Thanks for being our private Dream Foundation -- we’re so spoiled!)    We arrived at the Stillwater airport/landing strip just as the Williams Energy jet landed.  Diane and I helped a very teary mom out of the car while dad transferred the luggage inside.   Once out on the tarmac, three William’s personnel helped mom into a hard metal chair, and carried her up the steps and into her chair. With a long hug and a kiss on the cheek, I said goodbye and joined dad on the tarmac where I gave him a big hug.  I gave the Williams crew one last smile, and then walked with D to a secure spot where we could see the plane take off. 

We stood there, arms hooked, crying softly as mom and dad lifted off and then made a turn westward.   I mumbled to D that I couldn’t believe they were finally on their way, and that it was so easy.  Having made such a to-do about whether mom would be able to fly, make it up the steps, etc., we were left with a falling sensation of anticipating resistance and meeting none.  The whole ‘transaction’ lasted maybe 30 minutes, which is a far cry from the three plus hours we surely would have spent at the airport.  Watching mom succumb to emotion as the plane landed in Stilly proved we had made the right decision -- metal chair and all.

As soon as the plane disappeared, D and I headed home to grab a quick bite and load up the kitty cats for our little road trip.  And around 2:30ish, the (very vocal) boys and I were on the road for our ten (more like nine… speed limits are more like guidelines, right?) hour drive.   We arrived at Brelle’s around 10:30.  I quickly ran the boys upstairs, and came down to give mom and dad a hug, and help mom to bed.  The next morning, I awoke to mom shouting for someone to take her to the bathroom.  She was soaked so I helped her to the commode.  Ay, no rest for the weary.  With a shout and a soak, so began our routine, which typically starts with a morning wipe down, followed by dressing, and then breakfast.  :0)

That afternoon, we headed over to C’s for some quality time.  As soon as we entered his apartment, we had a code red with the commode, and promptly went into action.  Mom’s not one to dither over appearances, and doesn’t mind dropping trou in times of emergency -- usually with a grin.  I remember looking over at Erin just after settling mom on the commode; she was administering meds to a comatose Craig, and I couldn’t help but shake my head in disbelief over the circumstances:  me helping mom, and Erin helping C just a few feet away.  We shared a long stare, and then went back to work.  I helped mom into her wheelchair, and then wheeled her in to say hello to C.  She watched while Erin finished with his meds, and began to cry.  Craig turned his head towards her and began crying as well and with a laugh, he said “good to see you too.”  At first glance, he looked paler than two weeks before, and still quite sick.  He’s lost about ten pounds since the last time I saw him.  Yet still, the familiar sarcasm that is Craig.  Boy, how time can change everything, and then nothing at all.   

 After a nice dinner at Rock Bottom, E drove us home and, at round midnight, left to help C; dad and I finished up.  We awoke early the next day to start the routine.  As E mentioned, we’ve had to modify things after the unfortunate pss, pss, pling of the air mattress (whoopsy), but for the most part, the framework is still there.  And with a shout and a soak…so it goes.  -- J

CT Scan--Take 50?

Craig had ANOTHER CT scan today. It was meant to be a quickie--get in and get out--gig, lasting only a few hours from barium chug to the scan. Instead, it was a considerably longer process given the fact that, oh hey--bird on a wire--can't use the hickman for an IV line like it is supposed to be used. Better to, instead, try to dig for a lost and forgotten vein buried underneath the skin.

Craig and I arrived and waited in 'CT scan central' until he could push enough barium to make a difference with the CT scan. After swallowing nearly half of one bottle of the apple flavored (salty) shake, Craig began feeling nauseous. Fortunately, this was just before he was due for a host of anti-nauseas. I set up shop in the waiting room and, one after the other, pushed the meds. This may have seemed bizarre but we were in company of the Bold and the Beautiful; disgruntled office clerks; loud talkers; folks attached to wheezing, portable oxygen tanks; and the like. So, I think we were the least distracting of the lot! This just in: privacy refers to visual and auditory access, both of which folks enjoy having SOME ability to regulate in the form of furniture, privacy nooks, etc etc. Guess they missed the memo. The open "in your face" room configuration reminded me a bit of a Beetlejuice scene.

Fortunately, Craig was eventually called back. I waited in the "gown waiting area" for some time before a quirky gentleman whispered (literally) along the (not all that surprising) news that they were having difficulty finding a vein...six times over. What WAS surprising was that they weren't using his Hickman line, which is specifically for that purpose along with infusing saline and/or TPN. The infusion rate was not appropriate, evidently. Hmmm. In any event, they tried and tried with several nurses, but no dice. I finally was able to join Craig and saw him--his arms extended with cotton ball track marks up and down each arm. His pink chair was only a few shades lighter than the rims of his eyes. I'd be tearing up too, shoot. He told me what had happened and then said "it's a good thing I'm sedated or things would have really gotten ugly". I added "it's a good thing we changed your fentanyl patch, too, to cut some of the pain". He agreed and went on to say that they not only pricked him six times or so, but they dug and dug for an available vein. It turns out, Craig is pretty dehydrated. That coupled with the chemo-collapse of his veins made it seem like digging for fossils.

They gave up trying to do IV contrast and settled for the barium Craig had ingested--nearly one bottle, which is impressive given the past vomiting issues.   

Here's to hoping it's enough to have a clear read.

Here's really to hoping that the read this Thursday is in our favor. We could use some good news...

~E

Bad, Bad Leroy Brown

Yesterday, when Jill, Diane and I were helping our Mom into the car, Diane referred to Mom's defiant left hand as "Leroy". Wherever there's opportunity for song, we'll find it and fill the space with our (somewhat less than harmonic, but always full of fun) voices. I launched into "Bad, Bad Leroy Brown", changing the lyrics to "he's the baddest hand in the whole damn town...". Jill and Diane joined in and we left Mom hanging until we were 'good and through' with our spontaneous musical serenade. Priorities.

Last night was particularly rambunctious. As they say, we were on "fi-yah". We hit every off note like it was written for Pavorotti. Kid songs, Phantom of the Opera songs---no obscure song was saved from our C-rated (but with a whole lotta gusto) vocal talents. Dad joined us in our favorite, "my name is stegosaurus" song and like a moth to a flame, you could hear Craig quietly chime in from the other room. The sisters followed the voice to find him reciting a forgotten verse...the tyrannosaurus rex verse, complete with the thunderous "boom, boom, boom". Craig's eyes widened as he told the tale of T-Rex. When he reached the point of the booms, he pounded his thighs as the sisters either stomped or did the, always intimidating, hip-sway. Emily sat next to him giggling and shaking her head. Yes, welcome to the sing-alongs. She even hummed along to familiar "Phantom" tunes before the night was through!

After another long day of being pistol-whipped by life, it was a nice way to end the evening--laughing harder than we have in recent memory, following the current from random song to random song, letting go of all inhibitions and stressors for a moment.

~E

Pancho and Lefty

In the world of Cowboy songs, Mom (Pancho) would be the bandit kicking up dust and causing trouble, but in her own western, it's that wild Lefty that rules the roost (relatively speaking).  

Like a disobedient teenager, her left hand has a mind of its own these days. In nearly every moment, she's gripping something, stroking something. The stimulation may bring her comfort, but more times than not, she's unaware of why she has something in her left hand. We make light of it by naming her waist strap "Stew or Stewie", changing the context of holding a strap to perhaps "holding Stew". In a "Lefty" popularity contest, Stew would win hands down (ba dum pish...pardon the pun). She loves holding Stew. She'll also holds tight her kleenex, which weakens the grip she needs for more important things, say holding onto the walker. Whatever the case, Lefty is nearly always up to something.

Last night, Jill bumped me and looked over at Mom. We got Diane's attention too. Now, I'll pause for the cause and mention that we are not schoolyard kids poking and pointing at someone who has clearly lost mental functioning. It's a devastating and sad thing to witness. The three of us looked at each other with a twinkle of that sadness in our eyes. It's our Mom and this is her brain miscommunicating with her body. But, last night, Lefty was holding her food. Noticing the potential for a big mess, we slowly moseyed into her own little western, and asked "whatcha got thar"? She smiled and responded, "pasta, an onion...food" and we all laughed. Whew--she was aware, and responding favorably. Diane said, "that hand has to 'Bob Dole' something," and removed the food to give Lefty a fork to hold. 

The night before, however, she was a bit more agitated. We were heading back to resume watching a movie after dinner, but were waiting on Mom to take her pills. The dining room area was empty save that of Mom--wheeled up in her wheelchair close to the table, left hand stretched out trying to grip something, and the right hand holding her drink. I watched as her left hand fingers flinched in effort to make the move to her mouth. She stared at her hand either in intense concentration or disbelief. I sat down beside her and talked her through it, trying to time words of encouragement with the flinch of her hand. Pretty quickly, she moved one pill to her mouth, and reached for the next. Another stalemate with Lefty. We waited patiently until another flinch. Success! Both pills went down.

We take so much for granted. Those activities that were once unconscious responses to life are now interrupting her life. We try not to make it a big deal or make her feel different, and try to help preserve her independence and dignity as best as we can. It is what it is, after all. But, from a distance, when you step back from the frontlines, it's another sad--"loss of..."-- detail to this process.

~E

Comfortably Numb

Not too long ago, I drove Craig home and put him to bed after a rousing evening of movie watching and festival touring. As days go, this was one extraordinary day for both Craig and Mom.

Craig got a haircut for the first time in 5 weeks. Regardless of the style, he made an appointment and sat through a 30 minute process without hiccupping or vomiting. Even though the place creeped me out like the birds (what place says, "how can I take care of you today?" except for maybe some "offsite businesses" just outside of Vegas), kudos to him for hanging in there! Plus, heyyyy, he looks good, so double bonus.

I drove him to his apartment, gave him his meds, and then we scurried off to meet up with the family over at Brelle's house. The fam was planning on walking through a Gaylord neighborhood festival later in the afternoon, but, by Craig's impetus, we went early. We walked, slowly but surely, the several blocks to the fest, fest, festive festival. It was replete with beverages, junk food and, oh yes, a petting zoo for the youngins and the 65 and over crowd, as it would turn out. There we were wheelchair wrestling for space near the goats and alpacas. Ya know, come to think of it, I recall seeing goats lying on top of each other on the Discovery Channel-it's their natural resting position, you see. Yes, yes. And, wherever there are goats in nature, there are camels and turtles sharing space in perfect harmony. Why there wasn't a polar bear, search me. But, it was cute to see Mom and Dad interested in the animals and even cuter to see that Diane had overcome her childhood fear of petting zoos. (The girl would fall into hysterics, and always for the goat, too. The very FRIGHTENING goat. ACK! Who cares about sharks, gators and the like? Run! Don't walk!! "Them" goats are fierce! Only love in my heart, D.) .

We toured around the festival, navigating the many obstacles they set up for the occasional wheelchair warrior. Cracks, cords, little knee high kids--seemed like a regular backstage studio for American Gladiator! It was outrageous. But, not as outrageous as the sunshine band on stage. We stopped at an acapella group singing---"interesting"---versions of old standbys. Let's face it, the Lawlers aren't fan club presidents of any acapella group, and this one was no exception. If singing doesn't work out, they could always double for a dog whistle! I kid, I kid. It was more like a whale call. (Ouch!) Noooo, they weren't that bad. And, I'll give them props for singing a Beach Boys song---Good Vibrations. Mom is a big Beach Boys fan and immediately began to bee bop along...and then cry. We're becoming "comfortably numb" or desensitized to the frequent crying, rising to the occasion when the tears "speak". It's becoming easier to distinguish tumor tears from grieving tears, fortunately. Both are valid and important to recognize, and we do. Each time, we pause and comfort her; some of the time she knows why she's crying and others she doesn't. We work through both as they surface, and that time was no exception. I rubbed her back and Jill patted her leg--"comfort food" for the moment, as we say.  

We walked back after spending some time at the festival. To share that moment as a family was meaningful and memorable, and for that I'm grateful.

At home, each of us fell into chairs, "comfortably numb" from our long walk--some more than others since this was the longest Craig or Mom had walked in quite some time. I massaged Mom's feet as she and Craig rested. Shortly thereafter, and to our surprise, both Craig and Mom were up and at em, ready for a movie at 6:30pm. Most nights, 6-7 is the groggy prologue to sleepy hour for Craig, but tonight was different. There was a familiar sass to him as he teased Dad. He seemed extremely interested in what we were up to-particularly when it came to what Mom was doing-and wanted to join. We even laughed and joked around like old times. To see him smiling and laughing again is food for the soul, and a "mental still-frame" I will keep close in mind. He seemed enlivened by the day's activities, and more alert to conversations and smartass statements said under breath. The evening finished with a movie and the obligatory after movie critique. We sat around as a family and laughed together for the first time in awhile. I did my best impersonation of one of our doctors and that cracked Dad up. Good to see him laugh. Though admittedly tapped out by the end of the night, today seemed to be the most active day yet for Craig, and the most lighthearted and at peace we've been in some time (relatively speaking, of course).

A Van Morrison/Pink Floyd duet serenaded us with a version of "Comfortably Numb" as I drove Craig home, and immediately he fell into story. It's a rare occasion when he initiates a conversation anymore, so this was a prized moment. In a voice stronger and smoother than "normal" he said, "I can't tell you how many times I thought of this song as they were sticking me and pumping me full of medication at the hospital. The IV morphine [and other pain and anti-nausea meds]...  I'd first feel very warm and then I'd feel feverish. Then, pretty soon I'd be out of it and hallucinating". I asked what part of the song and he said all of it. And there were others, too. Other songs fell into heavy rotation in his mind, partly because he didn't have his own music handy. This exchange put a certain human touch to his circumstances. He has yet to describe or reveal much of what he is feeling and thinking, but through a song, he shed a bit more light into what he experiences in a moment when the light seemingly turns off to all of us watching. 

In any event, these moments are pearls-blemished as they might be, but beautiful nonetheless.  

~E

Chemo Cranky and Chemo Sobby

Chemo Cranky 

When one battles a life-threatening disease, you give him or her a LOT of latitude when certain personality traits---that you would otherwise not tolerate---surface. The cranky aspect is a somewhat unspoken detail of our reality, since it's one we can empathize with and understand. Who wouldn't be irritable under such circumstances? We certainly don't blame either Craig or our Mom when they become a bit hurtful. Still, it's a biting wind that stings at the time (and make you laugh after).

Craig is El Capitan of Chemo Cranky. We used to call him Cranky Craig or Craigy Crankypants, pre-cancer. It manifests a bit differently during cancer. Two mornings in a row, I evidently didn't have my "What Not to Wear" hat on and pulled a clean, brown shirt from his closet. I was promptly told that he had worn the color brown for several days now (I can't help the fact he owns a lot of brown) and I would have to find another. I thought to myself, "babycakes, we've been wearing the same clothes over and over let alone the same color", but I dutifully went back to find another color. Wrong again. He told me to hurry up, that I was taking too long even though I had JUST walked away and into his closet. Mariah Carey needed me STAT, apparently. I guess she didn't mind wearing brown, after all.

The next day, I pulled another clean shirt and learned that was yet another shirt he's been wearing "over and over". I went back to his closet and scratched my head. Unless "Mariah" had a trap door where she keeps her other shirts, I couldn't find a new "assortment" from which to choose. 

These are difficult moments mainly because I'm doing my best and the caretakers who came before me were doing their best. It's hard when you feel like your best isn't quite good enough, but, after all, it's the cancer talking--not Craig.

On my "to do list": buy Craig new t-shirts. Maybe that will make his heart smile....

Chemo Sobby

On a sadder note, Mom has become quite emotional of late. Well, of course, she has cancer, right? But, this is a different type of emotional, it seems. Today, we learned that this is a common symptom of frontal lobe tumors. She cries without much effort and to see her face turn red and her tears well, breaks my heart. Her voice turns husky and, in an instant, it's as if the parent becomes the child. Last night's "moment" isn't all that rare anymore. Lately, she's been afraid when she stands and begins to cry. She doesn't like to use her walker when she's tired, which means that the daughters have to help hold her up to keep her stable and safe. Unfortunately, she feels unsafe, as if she is about to fall, and begins to cry. We'll ask her if she's okay and she'll say "no" without giving much indication as to what is wrong. On occasion, she'll say that she feels like she's going to fall and we reassure her that we have her (usually, we are on either side holding her by her arms and the waist strap she wears, or we are in front giving her a bear hug as we pivot back and forth). Either scenario, she is safe and sturdy. She has never fallen in those circumstances. Last night, she really became scared and said "she didn't like when we do that", meaning hold her up and help her walk. By then, Craig and Emily had walked up and Craig's face showed concern and frustration that he couldn't help. Back in the day, he was part of the "Mom rotation" after her surgery, and stayed over night at the hospital to help with toileting and to make sure she was breathing. Sad how the circumstances have changed...

Earlier in the night, Jill and I took her to the bathroom to give her a sponge bath. During this "moment", she began to cry and felt scared or uneasy, as well. We did our best to talk quietly, to reassure her that we had a secure hold of her, and that we would help HER help HERSELF walk. But, her legs froze and she became immobile. Today's visit with a neuro-oncologist in Denver confirmed that she is having left-side neglect and attention issues all related to the frontal lobe tumor. She's having difficulty communicating with her left leg and arm, and is experiencing overall fatigue/weakness in her body. The neglect is most apparent when she holds onto something with her left hand and can't let go, as is often the case with her waist strap (which we use to help lift her up). She always holds that in her hand, often times without realizing it. Or, as was the case when washing her hands tonight, she didn't or could not reposition her left hand to wash the underside of her hand. She was also still gripping a Kleenex in that hand despite washing her hands. Later, at dinner, I asked her for a silverware set since she used the one nearest me. She could not locate it, since it was in her left peripheral vision. These details come and go and are not constant; there are times when she can wiz around with her walker and coordinate well with the left side. Yet, those times are becoming more and more infrequent.

In any event, the left-side neglect/weakness/what have you sets her up for feeling unstable and unsupported--like her world isn't hers to navigate and control. That's the conclusion we've drawn. Now, we are to the point of manhandling her or manipulating her feet. She relies on us to hold her up and place her in a seat, safely. For a woman who could do everything and anything once before, it must be difficult to accept being so dependent. It's very hard, and sad to know that there's a tumor in her head causing such a dramatic shift from the woman she was and still wants to be. We try our best to preserve her sense of control by encouraging her to walk. It's unfortunate that sometimes fatigue and the cancer get the best of that capability. Whether it's the disruption to the frontal lobe or grieving for her circumstances, we embrace Mom's "chemo sobby" moments as they come, and do our best to address the sources of stress, agitation and sadness as they arise.

Chemo cranky or chemo sobby, these are merely a few more brushstrokes to the painting of our lives. They add detail and texture but certainly are not the "big picture". ...it's just a story to tell...

~E

Say it Ain't So

The nighttime is the "write time", it seems. I've just returned from eating dinner with the rents and the sisters. There's a void with each dinner outing--a glaring hole of "incompleteness". It slaps you in the face when you request a table of five instead of a table of six. Scents and sights of food make Craig nauseated and these have been quite the nauseous times of late. We can't bring dinner over to his apartment and he can't join us at other venues. The pain it brings to leave him out is unbearable, and sometimes one of us will stay back just to keep him company. Other times, Emily keeps him company.

While driving to Brelle's house where the parents and sisters are staying, I asked Craig if he saw Mom's "moment yesterday". (I'll save the moment for a dedicated post). He said yes and asked what that was about. I relayed the conclusion the sisters and I have drawn, that it might be related to loss of control, etc since she has lost nearly all confidence in walking and standing. I asked him if he feels a loss of control with his process, and he said "yeah, kinda--especially when it comes to food." I asked him how that makes him feel, if he feels angry, etc, and he said "well I try not to think about it". It's a heartbreaking reality and one we can't do much about. I even asked him what we could do to help him have more freedom and he said "nothing really". Still, while at dinner, the sisters and I brainstormed options like sucking on hard candy, eating better sorbet or even ice cream--anything that might satiate his appetite and taste buds.

The cruel reality is made worst by the recurring presence of an unwanted guest.  The vacationing hiccups have returned with spray-on Florida suntans and cheap beach visors. They are well rested and are giving Craig another nagging assault--albeit not nearly as violent as before. But, this time, the hiccups hurt. Before, they took his breath, they made him choke, they kept him up at night like a pre-adolescent slumber party, but they didn't really cause pain. Now, he frequently requests liquid morphine to cut the edge. This new detail piggybacks increased drug fatigue, nausea, muscle weakness, and increased blood pressure. The guy can't catch a break, and he continues to lose weight. He's at his lightest now at 133, a two pound drop since Tuesday and a five pound drop since last Thursday. I asked the palliative care nurse what accounts for the weight loss and she said that tumors secrete an enzyme, which feed off of muscle, fat, etc. There are drugs out there that can combat this, but a large tumor bulk can overcome any effect drugs might have, even with increased calorie intake or exercise. It's most certainly not Craig's fault, but a product of not moving very often (due to drugs), water loss, and the overall fallout of having cancer. Regardless of his fatigue, he always inquires what the family has been up to and seems to enjoy being with the family, even if it is only to sleep in our presence. In his words, "it seems to work out well" partly because he has a napping buddy in Mom.

Yet, he's had a bit more energy of late and watched a snippet of CSI with the family (and hand-and-hand with Emily, I might add. Very sweet.) before becoming nauseated from Diane's healthy home cooking. Craig even talked back to the TV and made wiseass remarks. ...Just like old times.

Those are the moments you hold dear and hope will never end...

(p.s. I just gave him more morphine....man alive)

~E

Record Holder

It has been said that Craig is Chartwell Home Health Service's record holder for having the most medications (IV mostly) distributed to an "in-home" setting. It takes them the better part of the day to mix Craig's TPN and prepare his various IV meds. Folks requiring his level of care are usually in the hospital, so says the home-health nurse who checks in on Craig every week. Each time they deliver the boxes (plural) of medical supplies, I "ham it up" in tribute to the moms with a lame "I feel like the president, signing my name so often" comment--yuk yuk yuk. One delivery gentleman in particular said Craig beat others by a long shot in terms of how many sheets we have to sign, and medications that are "inventoried". In an arrogant/sarcastic fashion, I quickly replied, "well, there are no losers in our family and we want to make doubly sure no one can catch up". Hey, I charm the delivery fellas, what can I say.

All those who attend to Craig in a legitimate healthcare capacity often boast of our--perhaps illegitimate--nursing talents. Even the pharmacist kept me on the phone in the wee hours of the morning to profess the pharmacy's astonishment and appreciation for "what you [Diane, Jill, Emily and I] are doing". Yet, as we know, even the most skilled nurse can make mistakes. Ech hem, it takes a bit of humility to admit to succumbing to the human factors "set-up" of one of Craig's medications. I'll preface this by saying in my best 9 year old tattle-tale voice--Jill did it too. ;0) So, there!

When Jill trained me, she pulled out one of the many pre-filled syringes for Craig's IV meds. The Benadryl, as it would turn out, had TWICE the dose that was to be actually administered to Craig. Stupid say what? I told Jill this was a textbook "Human Factors 101" issue. The chance (and likelihood) of giving the full dose was extremely high--particularly under stressed conditions such as ours. Great! Just my luck...watch the human factors person who works in patient safety overdose her brother... Not so great for my street cred.

Six AM rolled around for my very first shift after Craig's discharge. I popped out of bed determined (and perhaps nervous) not to make a mistake (HF problem number 1: stress and horrible working hours, which cause fatigue, can affect 'vigilance'. More reason not to SET PEOPLE UP through poor design). I prepared the meds, stood bedside, and confidently (though sleepily) pushed one med after another. It wasn't until after I pushed the full syringe of Benadryl that I realized my error (HF problem number 2: it should be a single dose syringe to avoid such easy errors!). By the way, they are all in identical syringes save that for the occasional size difference. The only distinguishing characteristic is a faint, dot-matrix type printed label. Brilliant. Who can name the other human factors issues (plural) here?

I texted Jill to report the issue. After all, there's no learning in avoidance. She said, "don't worry. I did that too my first day. That's actually his real dose; he just PREFERS a smaller dose". Thank the lord for small favors, right! No harm, no foul. WOW. But, it's interesting when you can identify a train wreck waiting to happen and there's nothing you can do to avoid it. I couldn't really waste the Benadryl without compromising sterility. To rely on the always helpful advice like "try harder" and "really pay attention this time" is about as useful as Paris Hilton is to acting (or singing--you pick). Perhaps "more training", "work direction", and "education" would have been of use. Or maybe, WE COULD HAVE THE RIGHT DOSE IN THE SYRINGE! Goes to show how certain situations set you up to fail, despite your best intentions. Such is the case for Mom when navigating wheelchairs on sidewalks and through restaurants, bathrooms and the like. The physical environment does not support wheel-chaired patrons....still. It sets one up for a certain amount of failure in the sense of not achieving goals peacefully, effectively, and safely.  

To my surprise, the next med drop-off had single dose syringes and we haven't had a repeat event since. Imagine...  It's amazing (hands in the air) what thoughtful design can do...

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

Goals

Craig has a palliative care nurse who visits every week to assess "quality of life concerns" such as chapped lips, split tongue, intractable hiccups, vomiting, relentless pain and the like. She visited Craig two weeks ago during the time when his speech and breath were still interrupted by unstoppable hiccups, and asked him what his goals were. In between hiccups, he highlighted the primary "goal", if you can call it that, which was to continue treatment---to let Sorafenib have a longer period to 'prove its stuff' before being fired a la Donald Trump. He also named four, more immediate goals: 1) to play harmonica again; 2) to be able to go on walks outside; 3) to return to the outdoor and athletic activities he loves; and, 4) to return to work at least part time. That week, really the next day, the hiccups lifted and within days he was playing harmonica again. Check mark! Last week, Craig and his best friend Steve went on a walk down the 16^th Mall. Check mark, again! In a little more than one week, Craig was able to achieve goals that, at the time, seemed unrealistic to him.

Now those achieved goals---harmonica playing and walking---have become much more than mere goals. They are imperatives to his health. Craig's visit with his urologic oncologist last week indicated that he's lost considerable muscle mass in his legs, and has been given a "prescription" for four, ten minute walks per day. Tears filled his eyes immediately after the doctor discussed his muscle wasting and the need to walk, and I couldn't help but tear up at seeing his pain. In an exasperated voice, he explained to the doctor that he's absolutely tired all the time and can't help but sleep. "Right when I get home, the first thing I'll do is crawl into bed", said Craig. Dr. Flaig rolled over to him and put his hand on his knee to comfort him. He said it's not Craig's fault by any means. This happens, especially when lying on one's back most of the day and the drugs are doing that to him (among other things). Broke my heart. He's such an active guy. Just over the winter holidays, the four of us would look forward to either going to the gym or jogging around a cross country track. He usually was the instigator or, at the least, a very willing participant. In a matter of weeks really, he was stripped of his mobility much like Mom's been stripped of hers. What we take for granted every day--walking--they put on their "goal" list. Imagine.

The doctor also advocated strengthening his lung capacity through playing the harmonica as it will only aid in the fight against ‘sticky lungs' and shortness of breath. So, he now has even more incentive to partake in those activities that give him joy.

But, the catch. Yes, to every story there lurks the dreaded antagonist, and his is persistent fatigue. We went on a wheelchair walk with Mom yesterday afternoon, and Craig wanted to briefly join before heading home to be hooked up to a new TPN (nutrition) bag. We slowly walked around the neighborhood as the sun sank low. After 15-20 minutes, Craig's legs were quite sore, his body extremely tired. It wasn't 30 minutes after returning to his apartment and hooking him up to the TPN that he was snuggled between the sheets in the comfort of his own bed.

You can see the frustration and fight against this incessant fatigue each time. We often ask him if he'd like to lie down. He'd shake his head and refuse even as his eyelids flutter and head bobs. Despite the fight, without fail, fatigue always has the winning serve and he eventually peters out (usually in an uncomfortable position in a chair since Mr. Stubborn had his way). 

It's a product of the many drugs he's on, the cancer, and perhaps even lingering anemia, though he had a blood transfusion one week ago. This last transfusion didn't give him the euphoric energy like it had before, and that was visibly disappointing to him. It seems the disappointment continues each time his body succumbs to the fatigue, and he noted just today that he can feel that his legs are growing weaker. Jill and I noticed this and he brought it to air that he's been having more difficulty with balance. Jill noted that he stumbled quite a bit yesterday. He's also struggling with getting out of cars. Instead of taking one leg out and then the other in one fluid motion, he swings both around, plants his feet on the ground then finds the strength to stand.

Today, after what seemed to be a good morning filled with lively harmonica playing, Craig slept most of the day waking up occasionally to vomit and then go back to bed. He vomited at a time when we were to venture out on another wheelchair walk. I stayed back with Emily to attend to him while Dad, Mom and Jill walked around then went to dinner. It was at that one to two hour window of time when Craig arose with a bit more energy. He expressed his frustration that he slept most of the day, that interactions with people are compressed into sporadic and seldom placed 5 minute intervals. He wanted to be able to wheelchair walk not only for the interaction with the family, but he's desperate to keep moving his legs to stave off further atrophy or any decompensation. I've offered to do resistance training with him where he can do light leg extensions against my arm resistance. We may try that. At least tonight, he was able to go on a walk with Emily although he felt sick upon return and later vomited.

It's a hard balance to strike. How does one protect one's vitality when pinned down by 11 or so drugs and--oh by the way--cancer. It's something like walking in quicksand and, every now and then, Craig's caught in the middle. We do all that we can to throw him a line and help pull him ashore. Still, wish there was something more we could do--not for us or any expectation of entertainment, but, as his palliative care nurse says, his "quality of life".

Finding Our Feet

We thought we knew hard but we had no idea. While having my parents and craig reunite is important and necessary, the actual management of them hit another stratosphere of complexity. A routine has not yet been established and, in so doing, there are always logistical challenges and general pitfalls of the respective diseases to coordinate. Part of yesterday fell victim to establishing a "new normal" here in Denver.

Yesterday was rough for both Craig and Mom, and to attend to each simultaneously with the attention and care that they deserved was not only logistically difficult, but physically demanding. From the early hours of the morning to around 1am, Jill and I were constantly moving whether it was giving Craig his meds, helping him when he vomited, making our parents lunch, doing laundry, or toileting Mom and putting her down for a nap. Of course, we'd do this over and over until the cows came home if it meant that their lives were just a little bit easier for them.

Craig began vomiting Friday night and on into Saturday, so we decided it was best for our Mom to try traveling to his apartment rather than him vomit his way to Brelle's house. However, this wasn't without debate as to who was more fit to travel. The conversation--Erin:"maybe you should stay here today and Mom can come over, since you're sick. Don't think it'd be wise to push yourself." Craig: "Yeah, but all I need is a vomit bucket while Mom seems to need more help getting in and out of cars". What an absurd conversation to be having, if you think about it. Looked at independently, one would say they should stay put where they are given that they are FIGHTING CANCER and have COMPROMISED SYSTEMS, but when paired together--Mom's situation versus Craig's--it's a matter of who is worse at a given moment in time. When you step back from it, you can't help but shake your head and laugh at how ridiculous it is. I convinced him otherwise, but that meant Mom would go through hell.

Mom was tired starting out and maybe a little overwhelmed with the journey to Craig's, which only makes her leg strength diminish at a faster clip. Jill and I did all we could to get her in the car. She apologized that she couldn't help us and that made us even more determined to help her.

It was a protracted process getting over to Craig's, and she had lost all strength by the time we made it to his apartment. We tried to stand her up but her legs were not there...at all. They were crooked, bent, dangling from her body. She could not move them and depended on Jill and I to hold her up. We were on either side, holding on to what we could so that she wouldn't collapse onto the hard pavement below. We somehow were able to get her to her wheelchair without letting her fall. We made it up to Craig's apartment at last, and in time to change her wet britches. I helped Jill get Mom on a portable commode (which we brought with us) and then attended to Craig for his 2pm round of meds.

After lunch and laundry, Craig vomited sometime in the afternoon. There he was heaving over a bucket with our Mom peacefully sleeping in the next room. Despite the horror of that scenario, there's some comfort in knowing that they were sharing space and time going through their respective processes together--albeit completely differently. Later, when she was awake, she'd whisper questions to us about his drug regimen or nausea. It was cute and screamed of motherly love.

At another point during the day, Jill went on a smoothie run for my Mom (protein shake for her afternoon snack). She had to use the toilet right when I needed to switch IV drips. I slowed Craig's IV enough that I could get her on the commode, then switched out his meds (after washing my hands, of course!). Fortunately, Jill  showed up just in time.

Later in the evening, Jill and the rents went out to dinner while I stayed back with Craig, who was still vomiting. Things were slowly falling into place and, when they returned from eating, our Mom seemed much more comfortable. Attending to Craig and Mom became a more manageable process. Emily came over to help with Craig and to meet the parents for the first time in person. Of course, they had "met" on skype but this was the first in-person encounter. Mom cried a bit, as was expected. Unfortunately, I was giving Craig his 10pm meds, which knocked him out and he couldn't participate in the "meet the parents" experience. No bother. It is what it is. We throw status quo and "normal expectations" to the wayside, taking each moment as it comes---casually and with open hearts. Pretty quickly, we were joking around with Jill and Emily on the floor and the parents lounging in wheelchair or chairs.

The long day was finally over and Mom did much better getting in and out of the car to head home. She was much stronger standing on her feet. Craig's vomiting had resolved (for the most part), as well. By the end of the night, we had found our feet...literally and figuratively. ~E

Dueling Banjos

Wowee wow wow. What a day, what a day! Whewww. The moment we've been planning, retracting, planning again, changing the course, and worrying about has arrived. The moment that would reunite parents and son, cancer patient with cancer patient has taken place at last.

Diane told the front end of the story, which began today on a sleepy Stillwater Airstrip but really started months ago when life became much more complicated. Craig and I completed the epic tale at about 12:15, an hour after Cleo and her mister took to air. But first, the daily routine!

I awoke at 6am to deliver IV meds, then again at 8 to give Craig his chemo, followed by an IV push antibiotic at 10:45 before gearing up for the big reunion. Craig decided that he wanted to be there when Mom and Dad rolled in, so he got ready while I prepared his 12pm and 2pm meds to take on the road. I also cleaned the fella's car, since, well, we needed places to sit and he had none to spare. When I ventured back to his apartment to rally the troop (singular), to my surprise, I found Craig shaving! He's clearly his father's son. The man decided that he needed to shave 5 minutes before our already late departure time. (Really sweet, if you think about it. He wanted a clean shaven face to greet his parents. And, good for him for having the energy! But, back to the point). This, of course, is very similar to Dad's almost compulsive desire to want to let the dogs out, or wash his hands, or go to the bathroom, you name it, right before leaving. The ladies are punctual, the fellas are not. Go figure! But, hey, there are more pressing things in life than punctuality. As the saying goes, don't sweat the small stuff. 

Craig helped me navigate directions to the small(ish) airport on the outskirts of Denver. This is a notable point; Craig and I rarely talk during car rides. He usually is quite tired, fatigued, perhaps even nauseated; therefore, I try to remain as quiet as possible to allow any ZZZ's to pass even while driving. BUT, he was awake, alert, and interested in helping. Made my heart smile!

When Craig and I arrived at the airport, we were met by airport personnel and a representative from Williams Energy, who instructed us to drive the car up to the plane which had taxied and parked on the tarmac. The Williams Energy personnel, who escorted mom and dad to Denver, were so considerate that they asked us to pull the car even closer to the plane so that they could simply carry mom directly to the car seat.

There we were, parked next to a streamlined jet. The sky above was a bit cloudy, but otherwise beautiful. The moment had arrived, and could not have been more surreal. Craig stood tall with the TPN bag fit snugly against his back, the cord draped around his neck. He scrambled with the vomit bucket for a moment and I thought he was going to be sick. I realized later that he was merely making more room. No nausea, no pain. Not today. I realized then how screwed up the whole scenario was. Not in what was happening or how it transpired (that is quite beautiful), but the picture of my brother, who is fighting "terminal" cancer, waiting to receive our Mom, who is fighting "terminal" cancer. How f*^%ed up is that? Utterly mind-boggling. I close my eyes and shake my head in disbelief each time. Hard to believe that this is our family and we are really going through this.

Dad appeared at the doorway, and was visibly surprised to see Craig whom he did not expect to make the short trip. He crossed those five steps quickly and hurried over to Craig for a quick embrace. With the wind in my face, I couldn't tell if they exchanged words but body contact and the tears in his eyes said enough. Dad and I hugged and then we waited.

I could see Mom's profile just to the right of the plane entrance. Her white sweater complimented her blond(ish) wig. She sat patiently as the gentlemen readied another foldable waiting room chair. Slowly and deliberately, they lifted Mom using her black pivot belt and steadied her on the chair. They turned her around and already she was crying. She looked at Craig and the tears fell faster and harder. Then she looked at me and returned my wave. One by one, the men traversed the five steps until she found ground again. Dad and I cheered, while Craig covered a call from his friend Brelle who had arrived to help carry luggage and escort us back to her home she has graciously leant.

Within moments, the gentlemen hoisted Mom again to take her to her car. Their commitment extended beyond merely flying their "Angel" passenger to Denver, but to ensure that she had safely transitioned to her new destination. They helped Mom into the car, and Mom returned my obligatory "knuckles" once settled. She had made it at last (still crying, of course). Craig and Dad loaded in the back and away we went--from the compassionate wings of Williams Energy, mobilized by Craig's friends, Brelle and Leigh--to the generous hospitality of Brelle. These individuals turned a seemingly impossible and daunting trip (if achieved through conventional/commercial means) into something that WAS achievable and, in fact, relatively easy. Most importantly, it made Mom and Dad feel like they were the most important people in the world today. Mom was clearly overwhelmed by the care and support, and awestruck that the trip finally occurred. We all are. This is the product of not only Williams Energy, Brelle and Leigh but all those who shared their thoughts, suggestions, and support. We are no doubt indebted and will surely rely on your continued support to carry us through what promises to be difficult days, weeks, and months. 

To continue our day, we arrived at Brelle's and after getting acclimated to the new surroundings, so began the dueling banjos. Care giving doesn't stop at go, doesn't collect $200--at least not today. I helped maneuver Mom out of the car and into the house and then promptly set up shop to deliver Craig's medication. Immediately following that, I helped Mom to the bathroom. Given the commotion of the day, Mom's legs were spent and she had difficulty "talking to them". I would help her by picking up one foot, then the other, and then the other. We inched little by little to the toilet, and after resting there for a spell, inched back out. But, significant time had passed while navigating out of the bathroom, necessitating another visit. This was incredibly exhausting for her given the emotional, physical, and psychological workout she had already endured. She said, "I'm sorry sweetheart" and I quickly said, "lord, nooo. No apologies. I'm sorry you are tired and are going through this. We'll wait as long as you need to." Broke my heart. 

The surreal moments continue. Mom needed critical medical supplies and it was "now or never" as the window before Craig needed his IV drip antibiotics was quickly closing.  Craig joined me and we split up, trying to locate different items. Blew my mind. Here he was traipsing through a store looking for items for Mom, while carrying his TPN and working through his own growing fatigue. It brought back memories of teaming up before his cancer. The last time we did that was when picking out clothes for Mom over President's Day. By then, Craig was sick with a "hernia" or "gall bladder disease" and couldn't move that well. Still, he scoped out stores like the best of them, and helped me snag garments for Mom to try on in the dressing room, where Diane was stationed as her "dresser". This was our routine and there we were, moving at a slower pace but still set on our agenda.

We returned, dumped our load, made sure Mom was comfortable, and then sped (yes, moving faster than legal speed) off to Craig's apartment before antibiotic window surely closed. We made it just in time to hang the first bag and, just as quickly, Craig conked out from the high level of activity. While he slept, I ate my lunch (at 5:30) and ordered Mom and Dad dinner (with the help of Diane still in Oklahoma) after I realized that it would be very late before I could bring dinner to the rents. Mustn't let them die from starvation after having come so far! ;0)  Emily came over to keep Craig company (as a watchful eye--Mom and Craig really shouldn't be left alone for too long. We're a well-coordinated team). I changed Craig's TPN and by 8 I was off again to buy groceries for the rents and set up Mom's special bed. I asked what they thought of Craig and the reunion and Dad seemed relieved, stating that Craig looks thin and pale but not as bad as he had expected. Dad and Mom were scared and nervous to see Craig, understandably so. I can't imagine how it must be to see your son fighting cancer. For their sake and Craig's, I'm happy that they reunited on one of Craig's good days.

To end the night, by 9:30, I headed back over to Craig's to deliver his IV meds again at 10, followed by chemo at 11. And, wahla, so goes managing two cancer patients in two different homes! ;0) Whewwww.

Reinforcements arrived at 10:45; Jill drove in with the cats. Now, we're just awaiting the Yorkies and Diane, who has a cold and will delay departure until she's no longer contagious, to complete our family reunion. It's comforting to know that Mom and Dad are simply a 20-30 minute drive away.

Next hurdle, getting Mom on chemo stat! But for now, the big day is over. We'll see what tomorrow brings...

~E

Carried on like Cleopatra

Mom and Dad just left Stillwater like a bunch o'pimps in their own private jet, which was generously provided by the Williams Energy Corporation (yeah, I just plugged them.) And they deserve it, too.  The plane arrived in our rinky-dink little airport with three burly guys to help load her on.  Her wheelchair was too wide to lift up the stairs and through the doorway and she can no longer lift the left leg high enough to climb steps.  So, they got a metal chair from the waiting room of the airport and Jill and I strapped her in.  Up she went with two strapping men on each side and one at the back. Just like a queen.  Jill and I helped get her settled into the seat and away they went.  In an hour, they'll land in Denver and she'll float down those stairs again. :))

D

 P.S. Shout out to the Cheneys. Gonna miss my other family.  You demand your L and O, punkin' pie!

I'm leaving on jet plane

Well, I'm not really leaving as of today. The original plan included me flying from Denver to escort the rents a la a commercial flight. Diane and Jill would take up the rear en coche con animales. (Bet that's not even accurate Spanish...been a few years. Sounds a bit like someone had car with animals, but whatever).

So, a revision to the song: [Mama and Daddy] are leaving on a [private] jet plane. Don't know when [they'll] be back again [maybe two weeks]. Yes, in the world of cancer ping pong match Craig V. Mary, it would appear that Craig has a stronger serve this week. He's been flaunting his "I'm goin to get you cancer" stuff by playing harmonica, walking around, and the like. In the warped world we live in, we are banking this new found energy and upward progression with the hope that he can return the flying favor in two weeks. Yes, it's Mom's turn to fly since she is able. In all reality, we don't know what her flying status will be in two weeks. IF Mom is reading this, you are not failing! You are not an invalid! The tumor is just making you work for it. As Jill says, you are surviving cancer until...  Every day you are living, you are fighting!!! Survival takes many forms and a form just might involve the inability to walk, and that's ok.

Knowing that our Mom can still walk, albeit in limited capacity, why not make the most of it? With a little maneuvering, Diane and Jill will load Mom and Dad on the plane. We'll cross our fingers that no clots are thrown, no strokes are had. I'll be in waiting, ready to offload said 'rents from the plane to take them to one of Craig's friend's homes. This will aaaaallllll occur during a narrow window when Craig does not need medication. With fancy footwork, maybe I can buy a bit more time. Jill and Diane will arrive with zoo later in the day. If all goes according to plan, we'll be in one state at last.

By nightfall, the Lawlers will have reunited for the first time since our lives hit the proverbial shitcan. You don't know lonely until you are faced with the very real possibility of a family of six falling to a family of four in one short year. There are no predictions and we hold onto hope that we can be those that defy the odds, but to be separated by distance and time accentuates the loneliness and desperation to be together. To be together at last might very well let reality sink in. Everyone buy stock in Kleenex; I'm sure we'll be crying a river of tears.

~E

Blues Man

May 8th marked the night of the Blues Music Awards. It would air at 8ish EST, 6pm Denver time or as we refer to here---antibiotic time. Noticing the time, I hooked up the antifungal and then went to work, registering for a free membership to XM so that we could stream the bluesville radio program through Craig's computer. Craig was pretty zonked out the majority of the day and when the time grew closer, he still wasn't putting two and two together very well. BUT, when I turned it on and brought the computer closer, he perked up (in the world of drugs, this means he sat up and looked at the screen intently). We began to listen. As the antifungal slowly dripped, blues artist after blues artist played a few songs and won awards. I busied myself by cleaning his closet and folding his clothes. Brother clearly hadn't folded his clothes in QUITE some time. Wonder why? ;0)

Quick diversion: It's interesting to see the fallout of cancer. Bills, laundry, groceries can easily be forgotten when something much more important---say, one's health--catapults to the forefront. Yet, bills still need paying, laundry still "needs a washin" and I am happy that Craig can benefit from my supreme organizational skills like Mom and Dad do when I visit. I usually "brag" in sarcasm because the family and I never take ourselves too seriously, but I'm still awaiting a parental confessional as to my remarkable ability to dispose of moldy bread and clean out pantries. Why they haven't named a star after me is beyond me. In any event, Mom can rest assured that Craig's refrigerator is clean, his closet organized, and laundry folded.

Getting back to the Blues: As I organized, Craig would remark on the artists and whether their sound was 'generic' or 'unique'. It was fun to listen to him and to hear his excitement--his critiques were meticulous and specific to the art. He's truly a bluesman through and through. When he said one guy was 'generic' (ouch), I agreed and noted that the sound was NOTHING like how Craig and Watermelon Slim would play. There's something deep in their souls, a true love for the harmonica, that comes out in their voices and instruments.

The rest of the world apparently caught on. Watermelon Slim and his band were nominated for 6 awards that night, and they'd win big with "Blues Album of the Year" and "Blues Band of the Year". This was, of course, wonderful for Watermelon Slim. But, being Craig's mentor and friend, it was a wonderful night for Craig, as well. He beemed at the prospect of his friend winning not only accolades but prized awards for a talent Craig had known intimately for some years now.

Slim, as he's called, taught Craig when Craig was first starting out. I believe Craig had only been playing for a few years when he caught wind of "Slim" and they've kept in touch ever since. In his own words, Watermelon slim would say the "student had outrun the professor". These are emails Watermelon Slim sent to a friend of Craig's when Slim first learned of Craig's current condition:

3/4/08

Dear Graham,

I appreciate your putting me in touch with Craig Lawler, who as you say is a terrific young man, and is my greatest student on the harp. He went to Jason Ricci awhile back, and met me and the band at a gig we do once in awhile at a little postage stamp town west of Vail. He showed me some of what Jason had shown him about overblowing, making a diatonic harp into a chromatic one. I couldn't play a note of it, and threw my good hat. the student had outrun the professor, and in a fraction of the time it took me to learn what I know about the instrument. But that's just what a brilliant fellow Craig is.

I will be playing a rare gig here in OKC tonight, and I will be dedicating it to him. We talked about getting him down to the BMA Awards ceremony May 8, where I'm nominated for a bunch of awards. If I have to I will fly him in myself. I have an extra ticket at my head table with his name on it, if his health permits.

Regards,

Watermelon Slim

3/20/08

Dear Graham,

I am in Denmark at the moment, and though I have his number, I do not have a telephone I can use to call him. I have already begun dedicating each gig I am doing this year to Craig, and the dedication on my record which will come out in June, No Paid Holidays, is to Craig. Please let him know this.

When I get back to the US (April 5, as planned right now) I will try to get an advance copy for him.

God bless us all, every one,

Slim            

3/22/08

Graham,

Here is the dedication to Craig which will appear on my next CD. I hope you will pass this on to him, with my love and God's blessing.

Watermelon Slim
*********************************

 This record is dedicated to Craig Lawler. A brilliant man, and the greatest harp student I ever had.

Craig Lawler has a great family, and thank God has never lacked for anything. One could wonder how he could have the blues. Well, before he ever had cancer he had hemophilia. Just living in the world of bumps and scrapes was a challenge and a danger to him. I've been writing songs for years dealing with my own confrontation, resolution and with my own mortality. If he'd not found me to learn the harp from, he'd have found some other way of expressing himself.

Craig, of Stillwater , Oklahoma , is simply one of the bravest men I have ever met.  He is an inspiration to me and the Workers. God bless him, and his family

----

Congratulations Watermelon Slim and the Workers!

~E

Sing alongs

As Erin mentioned, sing alongs are typical for passing time.  Since time immemorial, we’ve tried to outperform each other in annoying song-dance tributes.  The three girls will typically start things off, with the rest of the family chiming in for an over-the-top, craptastic sing along.  All of us have our go-to songs.  For instance, Dad’s favorite is a beatnik version of “I shot the Sheriff” while mom likes to sing a super high version of “Windy.”  Mom and dad are also known for whipping out absolutely random songs, some of them self-composed.  Dad, for instance, wrote a song with “it’s a bad day for taking a test, but it’s a good day for getting some rest.” Mom, however, tends toward Michigan fight songs.  I remember running to her room one morning as I heard something like a scream coming from her bedroom. But, nope, no danger, just mom belting the ‘ooohhh’ to the following:  

I want to go back to Michigan,
To dear Ann Arbor town,
Back to Joe's and the Orient,
And back to some of the money I spent,
I want to go back to Michigan,
To dear Ann Arbor town,
I want to go back; I got to go back,
To Michigan.
Ohhhhh! (insert Mary wail)

Father and Mother pay all the bills,
And we have all the fun,
In the friendly rivalry of college life, Hooray!
And we have to figure a helluva lot,
To tell what we have done,
With the coin we blew at dear ole' Michigan!  

Jeez Louise.  Caterwauling fails to describe.   

 

Just the other day, D and I did a rendition of the Phantom of the Opera for mom.  It started with me saying "come to me" (Marlena Dietrich style...another family favorite) to the tune of the Phantom’s “sing to me.”  She cracked up when D and I squawked the high note.  (The Phantom always makes her smile.)  We then sang an old childhood favorite “My Name is Stegosaurus, I’m a funny Looking Dinosaur.”  We could hear dad’s deep baritone chime in from the kitchen.  Hilarious.  We ended with a scat version of TKO and a bouncy version of “I’m walking, yes indeed, and I’m talking, about you and me…”  We like to keep our annoying tunes theme oriented and slightly motivational, although, I think our screeching has more the effect of slowing the ol’ lady down, than getting her to hop to it.  I remember a time back in August when D and I took mom for a walk.  We bobbed back and forth behind her to our rap version of Rocky and said we’d drop some beats for her as theme music.  (I bet she was rolling her eyes the whole way.)  Come to think of it, the most motivating song would be the theme song to Law and Order: Special Victims Unit (SVU), mom’s favorite show.  She even has a finger point-finger point-hip shake dance to go along with it.  Maybe SVU could be mom's rehearsal song for American Idol?? It could work.  -- J

An Ode to the Sisters

In sixth grade I met my soon to be best friend on the bus to school. She offered me some of her chocolate flavored chapstick and we became fast friends forever after. What I didn't realize at the time was that becoming friends with Pearl meant befriending her entire family. They were a unit, a flock, a web of intertwined threads and knowing one meant becoming involved with them all. In some respects, the Robinson family was the polar opposite of my own—loud and boisterous, unorganized, mostly unfettered by parental rule—and I loved every minute I spent with them. For several years I became the 6th Robinson child, practically living in their maze of a house, complete with two loft bedrooms and a basement full of ski equipment, ice skates, and firewood. This was the only time in my life I was entwined so deeply in the intricacies of someone else's family.

Meeting Craig at the time that I did has given me the opportunity to become involved in the life of his family. My level of involvement and the rapidity with which I have come to know his family, particularly his sisters, has been escalated by the situation. I was extremely nervous to meet Craig's sisters so quickly. Even after a few dates I had heard of many adventures embarked upon by the "children" of the Lawler clan, and knew that I would likely need a big fat seal of approval.

In retrospect, I can say that if there is anything positive for me about the severity of Craig's illness, it is that I have had the chance to spend so much time with his sisters. Diane's sharp wit; Jill's calm presence; and Erin's optimism and meticulousness have sustained me more often than they know. As an outsider who has been given a slice of the insider's perspective, I am amazed on a daily basis at the emotion, skill, grace, humor, and sensitivity that Diane, Jill, and Erin have all shown as they have taken their turn as Craig's caregiver. Their care allows him the comfort of home; without them he would likely spend almost all of his time hospitalized. Their patience, respect, and kindness often takes the sting out of an extremely compromising and difficult situation. Despite their emotionally debilitating and tragic situation, these girls can be counted upon to take an optimistic (although realistic) viewpoint and keep on truckin', usually with a smile in tow. And possibly most amazing, is that all three have taken the time and mental energy to welcome me into the fold, showing true compassion and understanding for my unusual position in their lives. Craig is incredibly lucky to have these women for sisters, and all three are people I would choose to have in my life, regardless of the situation.

All of this makes me anticipate getting to know Craig's parents, the people who have helped nurture and develop the Lawlers I have come to know. I wish you all a safe journey, traveling and otherwise, and want you to know I feel fortunate to be along for the ride.

Emily

Cuss can and Los Cabos

Back in the day, we (i.e. the four kids + dad) used to have a cuss can in which we were to deposit one quarter for every time we said an impolite word.  Though, technically, we should have been able to collect enough to pay for at least three college tuitions, I doubt we had enough for even a Diet Mountain Dew.  For those gimmicks to be effective, you first have to have a) a ‘shit’ sheriff to keep the peace; b) some way to enforce it; and c) people who actually give a damn (whoops).  Still, had we our little can o’ cuss now, I think we (especially senor Craig) would all be depositing our entire life sayings, for there’s nothing like having two people diagnosed with aggressive cancer to bring out the ol’ sailor mouth (or at the very least, a whole bunch of Jeez Louises).   Call me old fashioned, but sometimes a good ol’ ‘f-ing-A people’ is needed, if only to take the edge off.   

Take yesterday, for instance.  To celebrate Mother’s Day, we took mom to her favorite restaurant (which is located in Tulsa).  The drive up went well; mom seemed to handle the bumps and turns sans nausea.  As we pulled into the packed parking lot, we had dad jump out and put our name on the list.  The hostess assured us that it’d be a 20 minute wait – not too bad for Mother’s Day.  So, D and I helped mom out of the backseat and into the wheelchair – now a two person job – and headed for the restaurant.  We had to weave around tables and pint-sized toddlers but finally made it to the front door. 

And so began the nightmare de Los Cabos.  First, the customers wouldn’t give way to mom; I had to laugh when, as someone (I think Diane) held the door for mom to go through, at least ten able bodied folk cut in.  Classy.  Then after squeezing mom into the entrance way, we had to work our way through narrow aisles and around pulled out chairs just to reach the women’s bathroom.  Mom, Diane, and I then had to squeeze into a small handicap stall, which was handicap in name only as it lacked not only a handrail, but a proper seatback.  Oooooh, get ready with the quarters…   Would it kill someone to put in an f-ing handrail in the handicap bathroom?  And why not splurge on an extra two feet and an f-ing Kohler flip-top?  As Diane said yesterday, it was like we were doing Cirque Du Soleil just to get mom on the toilet, never mind the wiping, changing, and transferring.   Doing a few modifications would sure as heck be cheaper than a personal injury lawsuit, just sayin’ people. 

After the bathroom, we weaved back through the aisles to the front entrance where we proceeded to block traffic for the next 20 minutes.  Hello, fire hazard (actually the police did arrive later in the evening, but for what, we’re not sure).  They called us up to the hostess booth three times, only to be sent away due to some error.  Finally, they found a table outside and near the bar, which was the equivalent of sitting us near the kitchen.   They treated mom (and us) as if she was the first wheelchair bound patron they’d ever had to ‘deal’ with.  So perturbed was I about the bathroom that I asked to speak to the manager (this was before being seated).  I pleasantly mentioned to him that it would make the world of difference to a disabled person if they could install handrails and seatbacks for all their handicap stalls.  He pulled out a piece of paper and dutifully wrote my comments down -- we’ll see if they actually do anything.  I figure, it’d be easy to stay quiet, but I’d hate for another family to have to go through a similar ordeal, when the fix is so simple. 

 

The lack of handrails and adequate toilets serve as subliminal messages that the world is for able people only -- people with special needs should stop being selfish and stay within the safey and comfort of their own homes.  With all our technology, evidence-based design, blah, blah, blah, it’s impressive how unfriendly the U.S. is to the disabled.  And the list is long: streets are rocky; sidewalks are uneven; doors are too narrow; and bathrooms, well …sh*t.

 

After dinner, and thankfully, an easier bathroom run, we said adios and f- you to Los Cabos, promising ourselves that it’d be a long time before we’d come again (or at least long enough for them to install the damn handrails…we sure do like their queso).  Aw, but here’s the kicker.  About ten minutes into our drive, we noticed a strange beeping coming from the passenger side.  We searched our cell phones to see if it was perhaps a dead battery.  Nope.  We had run off with their pager.  Take that a-holes … and add another quarter to the can.  -- J

Freight train, freight train run so fast

Last Christmas, we sat around the kitchen table after unwrapping gifts, and lazily enjoyed breakfast while listening to Craig play his guitar and harmonica. Jill made a request for "that one song". Craig began playing "Freight Train" and in an instant Mom sang along. Pretty soon we were all singing a song some of us had heard before and others were hearing for the first time. That song will always represent that one morning when we were together, singing. And, still, it is a theme for the progress and pace of our reality.

Each day presents a new way of reminding us what we are dealing with, and each day we manage to sustain a new level of determination, care, and consistency when so much around us isn't so. It's a tumultuous river to navigate but somehow we stay afloat.

Today, Jill, Dad and Mom went in for the reading of the recent MRI. Like Craig's MRI readings, these are both dreaded and anticipated moments. While we want to get it over with, we don't. Her recent, worsening symptoms hinted as to what we'd find, and it promised not be to in our liking. More and more, she's had difficulty using the left leg, keeping upright without falling, keeping normal cadence in speech and gait, and just yesterday Jill noted that she gripped onto her walker without any real intent to use it. Jill coached her to let go, and Mom would eventually join in telling herself, "let go of your hand, Mary". Weathering nearly 10 months of her GBM tumor, and sitting front and center with its cues of progression, has made us quite the gifted armchair oncologist. Several times now we've dissected her symptoms and concluded that the tumor is on the move, and several times we've been accurate. Today was no exception.

Like a freight train, her tumor has roared ahead claiming more than half of her original tumor bed in the right frontal lobe. To put it in perspective, back in early April during the time of sepsis, her MRI report showed what was originally deemed a "non-enhancing flair", which may or may not have been tumor. They revised this to say it was definitely tumor, albeit a wee sliver of a thing. Now, there's no question whether it's back or not.  It is, and so began the scramble to find alternative treatment options.

As per usual, no search would be complete without first hearing inspiring words from the very helpful and always informative oncologist. Jill relayed that he said, "yeah I think it's the tumor and not the whatchamacallit". Yes, yes whatchamacallit--that's a common search term in Medline. Brilliant. It gets better. He made the astute observation that Mom had really gone downhill since the last time he saw her. Might be true, but it would be worthwhile to ask him when he remembered seeing her last since, quite frankly, he doesn't seem to remember much of anything (certainly not the fact that Craig is also sick when I personally told him twice). It is true that she's had a hard time of late. To tell someone that point blank might not be the best choice when said downhill turn isn't related to a simple head cold but to something that is taking her life little by little. Not something to talk about so casually and callously, nor is saying that she should get to Denver as soon as possible because "it's only going to get worse". Really doctor? Tell us more. Seems like a bake sale and things are going fast, fast, fast.

The 'beaut' of it all is that rather than saying "this is disappointing, but let's look at other treatment options" (since Mom has articulated she's not willing to throw in the towel on her life), he told Jill basically that the family is to go on the hunt for clinical trials. He recommended Gamma Knife surgery...again...and...again...we'll have to tell him that that procedure is not indicated for her cancer. In fact, leaders from NCI and Duke explicitly say that it only causes necrosis, which will cloud future MRIs, and will cause extreme edema--plus, oh by the way, the tumor will come back with a vengeance.

So, Jill called me at 9:45 or so and by 10ish we were hitting the pavement, contacting our various resources in Bethesda, Ohio, California, New York, Texas, you name it. One contact mentioned a specific drug and it was corroborated by the Duke oncologist once I spoke with him late afternoon. He verified with me that Mom wasn't depressed in terms of dignity, self-respect, etc and wanted to pursue treatment options. Then he mentioned a possible plan and will confirm it once he sees the slides that Dad and Jill sent today. Jill also got in touch with immunotherapy clinical trials out of California. It's interesting--tears may fall but they fall while strategizing and networking. We recognize that time is of the essence for Mom and by close of business today, we had a viable plan for her. Now that's a different type of freight train! The new plan won't save her or cure her, but it just might slow growth or even reduce tumor size, and give her more time. When time is discussed now in months, weeks, even days, we'll turn over any stone to give her just that. Still, it's extremely hard to write and even more impossible to comprehend that we might be that much closer to this mysterious 'inevitable' lurking in the shadows.

As such, where there was planning, there was grieving. Craig came out the family room and sat down after I spoke with Jill. Times before, we had asked him just how much he wanted to know of Mom's condition and we'd ask Mom the same question about his condition. He said he wanted to know everything. When I told him the news, as Lawlers do, he stared ahead intently as he weighed the news, fought the tears as best he could, and let them slowly well in his eyes until they finally fell. I sat on the floor next to him and put my hand on his knee as we cried together. He said it was hard news to hear. And, then he wondered what it will be like when we are all together this weekend yet seemed more determined than ever to reunite.

And, there again, the freight train traveling on a parallel track. We have two aggressive, unique forms of cancer roaring ahead, and a feisty, stubborn, fearless family willing to lie on the tracks to stop it. Just wish that would actually stop these trains from 'running so fast'.