Salon Erin

Whenever I am home with Mom, we take respite at Salon Erin for a little ‘upkeep’---or as I like to say, “takin’ mama to the parlor”.  Communicating through the power of human touch is a bonding moment I hold dear to my heart. I give her a pedicure, massage her feet and legs, and lather her up with her favorite lavender lotion. She usually wiggles her feet in anticipation and murmurs a few “ohhh that’s nice”, “awesome”, or “that’s exquisite” throughout the ‘session’. I look up every now and then to see her pitched forward with a broad grin, watching me as I work. The sparkle in her eyes says it all. Makes my day to know that the small gesture of a pedicure can be so fulfilling for her, and perhaps, just maybe, distract her from the other junk in our lives. -- E

Barium or Bust

The doctors came in this morning and said that they are no further along in solving the infection riddle than yesterday. The cultures have come back negative thus far, leaving them scratching their collective head as to what could cause the high fevers. So, next option…another CT scan. Just as Craig is allergic to real cats, the blessed ‘cat scan’ invokes a similar reaction (albeit with different physiological symptoms) for it involves ingesting his beloved friend, Mr. Barium shake. He has had to take Barium 5 times before, and each of those 5 times has invoked intractable vomiting. Always something to look forward to! You can imagine Craig’s enthusiasm when they said, and oh by the way here is a liter of salty barium you have to throw back in two hours—even though the volume alone makes you vomit, let alone the fantastic taste. The nurse called the doc to advocate busting out of Bariumville, but no dice. Over two hours, Jill and I performed operation Barium push every 3-4 minutes. We’d stir him from his drug induced sleepy state—a state that almost prevented him from drinking altogether!---and have him sip a little bit at a time. We’d rotate shifts to keep up vigilance. After two hours, he was able to keep down 700cc’s---a huge improvement from the vomiting episodes before. (The last time he had to push the barium, he vomited after only 100cc’s). Hi-5 to the twinies and a big hi-5 to Craig for keeping it down! Let’s hope the CT scan points us in SOME direction for resolving this mystery infection.  -- E

Goin' fishin'

Craig’s feeling much better today -- he's actually taking a walk down the hall just as I type.  The doctors were in earlier, but had little in the way of new information.  At this point, all the tests have come back negative, so we’re now on to plan B, which is a full CT scan of his lungs, stomach and pelvis.  If the CT comes back negative, then they may consider a bone marrow biopsy, just to make sure he doesn’t have any growth in his bones.  And if that doesn’t work, well, then we’ll just have to chalk his fevers up to something of unknown origin.  He continues to have a fairly high fever, despite being on a hefty dose of antibiotics.  I have a sneaky suspicion that this may all be related to his cancer, but I suppose time will tell.  I’m off to Oklahoma tomorrow, and since C has been in the hospital all this time, E and I have yet to have our one-on-one training.  We’ll have to pass the torch blind, so to speak, and rely on C’s in-house nursing service to pick up the slack.  Still, C and I have developed a little system over the past months, and his meds have changed a bit.  I’m nervous about leaving C at the hospital and leaving E without at least one dry-run.  However, I also need to get back to Stillwater to reconnect with mom and dad, and help with her care.  I suppose we’ll wait to make any decisions until we know a little more about C’s condition.  And still, we wait… -- J

Thank You!!

Just wanted to say thanks to everyone for all the birthday wishes! I had a great day and hope that Uncle Bruce and Veda did, too.  And steve, how would you get around safely if I had your training wheels? hahahahaha

D

The 11th Floor

This is my second visit to Denver in as many months, and like the first visit, the first stop was the University of Colorado hospital—our home away from home. I rolled in late in the evening after 10 hours of the most exhilarating drive yet. Fields to the left of me, fields to the right of me---the variety was overwhelming. The encouraging news is that had I drifted off the road, I’d likely just blaze a course through the fields, likely running into the occasional cow or llama instead of a hill, or say, structure of any kind. This would be very cruel if it weren't so true. (Not all of Kansas is this way, just a good stretch of the journey). It’s quite stunning, in all sincerity. However, I tempted fate twice, flirting with “empty” much too closely. Kansas is not quite the state to do that, especially when there was ne’er a structure as far as the eye could see. I typically appreciate the open skyline, unfettered of all things billboard or building. BUT, it would have served the weary traveler well to have A sign indicating ‘gas ahead’ from time to time. I’m exaggerating because it’s fun. The drive was quite lovely, and I appreciated the uninterrupted sunset above and beyond the “hustle and slow” of the DC beltway.  

 

I did see quite a few advertisements for visiting a prairie dog farm. Craig or prairie dog, Craig or prairie dog. What to do… Alas, I stayed the course, resisting temptation to see the world’s largest prairie dog. Guess that lifelong dream will have to wait.

 

I approached the hospital around 10:30; Jill met me outside with a big hug, and said how glad she was that I was there. We let out a big exhale and moved toward the hospital and Craig’s room. The “11^th floor” is the oncology unit and a place Craig has stayed probably more nights than his home over the last month. I was actually surprised and a little disappointed not to see a designated VIP room with a placard for him. Surely his frequent flyer miles have earned him a badge of some kind. I wonder if hospitals have punch cards where the tenth visit’s free. If so, ante up!!  

 

We opened the door. The only illumination was that of his IV stand and dimmer lights that hung low over the couch near a window with a panoramic view of Denver’s ‘burbs. There was a quiet hum from the medical equipment pumping him full of the needed antibiotics and nutrition. Craig lay in his bed clad in blue hospital jammies and appearing very small---half the stature that I remember and much paler that I’ve seen. Emily was by his side and his friend Writer sat on the couch. In a weak voice, Craig said heyyy and opened his eyes halfway to show the palest of blue eyes. I put down my stuff, made a silly joke and held his hand, trying to bite back tears all the while. No matter how well you prepare yourself, not enough imagination and scenario-playing in the world could prepare you for seeing your brother so very sick in such a short time. The sadness and anger welled in me faster than expected. It wasn’t a shock and awe experience, but he was quite incoherent, very uncomfortable, tired, zonked out, thin, you name it and that’s a stark difference to the energetic, quirky, colorful brother I know. Any shade of grey from that colorful person takes some adjustment. The nurse came in, biding time for me to come to terms with the image of my brother fighting cancer and this all too raw reality. Wish this wasn’t happening to him. Wish there was something more we could do. Until we find the magic answer, we’ll keep up with the laughter, the random stories, the cold cloths on his neck as he vomits, the interception of medical errors, and the hope for a better day with every day that passes. -- E

He’s back in the Denver ER, you don’t know how lucky we are, boy ..

Craig had a fairly rough weekend, to follow a fairly rough week.  After running a high temp Saturday and Sunday, I called the medical oncologist for advice, and after a minor discussion with Craigery on the pros and cons of heading back to the hospital (someone needed convincing), we hopped in the Honda and headed due-whatever direction the hospital is, for yet another trip to the ER.  Thankfully, Craig’s earned enough flyer miles to be fast-tracked to a holding cell (or patient room, as they prefer).  Actually, I think the doctor called him in for us, but it’s fun to think that we’re famous where (and when) it counts.  Anyhow, as per usual, we bumped into a not-so-friendly ER nurse, who preferred talking shop – in this case, the latest issue of the Economist -- over patient support.  He was quite rude until he saw that I was reading ‘his favorite magazine.'  Prompted by an article on the elections, we dove into a ten minute debate on Clinton’s candidacy, etc.  Too bad he couldn’t muster that kind of enthusiasm for administering C’s meds on time!  Despite telling him that C was on a strict med schedule, the guy would disappear, or worse, chitty chat out in the lobby about other patients (hello HIPA...pssst, sound travels through curtains).  Maybe we should have left little Economist treasures outside his room to lure him in.  

Oh well, after spending a solid 8 hours in the holding cell – and only after undergoing the standard chest x-ray and urine test (which are performed without fail and despite hefty resistance) -- C was finally wheeled upstairs to the 11^th floor.  The sad, yet comforting, thing about the oncology ward is that friendships are often made -- nurses bond to patients, and vice versa.  The nursing staff here is top-notch, and, by now, they’re all aware of C’s condition, making his treatment a little easier. 

He’s doing better after another tough night -- his temp was up to 103, which has been the highest yet.  The new medley of antibiotics seems to be doing the trick, so we’re hopeful that he can head home in the next few days.  Erin is now here (more on her arrival in next post), and will be undergoing intensive one-on-one training (complete with flashcards and a real-life demo) as soon as he’s out.  Emily will also join for the ‘learning-by-doing’ extravaganza.  No room for slow learners, no sir, only perfection.  (Good thing D’s in Oklahoma…aharhahar.  The jibes will keep coming until you figure out how to type....love in my heart, D, love in my heart.) ;)

So, we wait – which is something we’ve mastered.  At least now, I have my other buddy here to help pass the time. -- J

Tragedy of distance

Tomorrow, I'll drive to Denver to switch with Jill. We'll take a few days to ensure a proper 'handoff' and then she'll journey to Oklahoma to help take care of Mom. How does one leave their sick mom to tend to their sick brother or vice versa knowing that time is somewhat of a scarce resource? It's unbelievable we are even faced with these decisions, but here we are and have been for the last 2 months.

It's a heartbreaking and somewhat helpless feeling knowing that we all need each other but are torn between two places--four, if you're counting DC and Bangkok. To visit one means sacrificing precious time with the other. So, we rotate and hope that we can "pack it in" in the time we have before another shift change. It would be ideal and perhaps easier to move either Mom or Craig to one location, but both Craig and our mom can't necessarily travel without the significant risk of compromising their current conditions, not to mention disrupting the element of "home is where the heart is" for one of them. 

It is the proverbial logistical nightmare at the moment and we hope that as the weeks pass, one of them (hopefully both!) will be well enough to make the journey to visit the other.  

I once wrote a poem when Craig was originally diagnosed two years ago in response to the abrupt departure from normalcy and simplicity (relatively speaking...not like our lives were all that simple pre-cancer). This is the beginning of one version:

...The harried riptide of this disease

changes the contours of a crafted plan

calmly and cruely it carries you sideways

further from the simplicity that you demand

'til it finds you between the crest and the fall

crying i can't swim despite swimming along...

~E

With every high there is a low, with every to there is a fro…

Emily came over this afternoon to spend some time with Craig.  I took the time to head to Barnes and Noble for the latest Economist, and catch a nice bite to eat at the Rock Bottom Grill (and this time not next to the kitchen!).  A few hours later, I arrived home to find C in the bathroom, so I checked in with E on how the evening went.  Once he emerged, he passed by me shaking, and headed for the bed.  He tipped over slightly just as he reached the bedside.  I haven’t seen him have balance problems before, so that was a new one.  He crawled into bed shaking, and I was just about to take his temperature when he vomited.  His eyes looked so scared; this was the worst I’ve seen him.   It looked like he vomited a few specs of blood, though not enough to be concerned.  This may simply reflect a slight irritation of his gut from all the retching.  Anyhow, I just checked his temperature, which was normal, though he had a temp of 101 earlier today.  One would think his temps would go down, if bronchitis was, indeed, the culprit.  His temps may simply be the result of his cancer, which is a tad disconcerning.  I’ll continue to keep an eye on his symptoms, and if they continue to worsen, well, back to the hospital we go.  ...And that's what makes the world go round.  -- J

9:15 p.m. -- His fever is back up to 101.8.  I'm not sure if it was the fever or the fact that he's been in bed most of the day, but, for whatever reason, he lashed out at me.  He's clearly frustrated with the situation, and I don't blame him.  The hot flashes alone are draining -- add on back pain and nausea, and it's enough to drive anyone over the edge.  Still, it's hard to stand there and get accused of mucking up the drug regimen (when it's not the case), and be blamed for his fatigue.  Caretaker abuse ;) comes with the territory.  Right D and E?       

 

You Did WHAAATT?: A Hodgepodge of All Things D-sgustin’ …

But, first, a quote:  “Well, it looks like I forgot to shave again.” -- Craig, the observant (April 26, 2008)

Hardcore

Craig’s been complaining of thirst lately (perhaps the chemo), and, as a result, has been playing an old fashion game of chicken with the vomiting by drinking more water.   Yesterday, he lost big time; he vomited at least four times with quite a bit of volume, compared only a few times just a few days before.  We now have ice-chips for him, to help quell the feeling. 

Anyhow, a funny thing happened while I was working out.  Just before heading to the gym, I gave C the second dose of his antibiotic, better known as the little white horse-pill.  He’s supposed to take this with “plenty of water.”  Riiight.  Hey Vlady, chug-a-lug!  C was already at this saturation point, so the pill really didn’t have much of a chance staying down (thankfully, he’s been able to keep the chemo!!).  He vomited the pill within 40 minutes of ingesting it.  He only has five pills, with each tailored to pack a pretty hefty dose.  So, seeing the little guy abandoned in a pool full of vomit, C did like the Army, and left no man behind.  He scooped that sucker out with a knife, dumped it in a glass of water, swished it about, scooped it back out with the knife, and plopped it in his mouth.  Now that’s commitment.

Jamming the Harmonica

Craig broke out his harmonica today, which was his first time to practice in several weeks.  I just doubled his Fentanyl patch to two times the size of his last patch.  It seems to be doing the trick.  At one point, I asked what he was playing, as it sounded familiar.  He said he was playing something like ‘cousin Mary’, but then added, “it’s hard to play when my nose is running the whole time, and when entire patches of skin are flaking off into the harmonica.”  So that’s why the rattling…

Ped care

And last but not least, I had the misfortune of stumbling on a commercial this morning, which showed a bunch of ladies sitting in a living room (imagine a Tupperware party), scraping dead skin off their feet.  I told C about it, and he said well maybe he should get one, as hoof problems are a well-known side effect of his new chemo.  I said we should invite Writer and Tamir over for a good ol’ fashion skin scraping party.  They can dump the contents out on a towel, just like the commercial.  And in my best dad voice, I say 'gggross'.  --J

"This is what you call...payback"

There is a time in Michigan that I think about often as a surefire way to make me smile.

Most nights, as my dad readied himself for bed, I would help tuck my mom in, starting with helping her swing her legs over and then scoot, scoot, scoot away from the edge of the bed. We had a system where she'd use the foot rest as a pushing board as I held it in place. More times than not, she'd swing over and settle into an awkward resting place as if being jack-knifed at the waist, resting no where near her pillow or the head of the bed, and flirting precariously with the edge of the bed as if it was EXACTLY where she meant to be and wouldn't change it any other way. After some convincing and lots of laughing, we'd finally compromise with a place at least 6 inches from the edge and something relatively straight. One night, no amount of coaching in the world from me or dad would make her fatigued body move. Finally, I stood over her on the bed so that I could get a better angle for moving her shoulders and hips, but not before saying, "since when did you become mute, mama" (we say mama when we're being silly or a wiseass and it always makes her smile). She had not been talking and finally broke the silence with a laugh. (Little did we know at the time, she was likely developing the blood infection...hence the sheer fatigue).

But, back to the night I like to recall. I was repositioning my mom, grabbing her pillow that rested two feet above her head to place under her head and shoulders (which were somewhere in the middle of the bed rather than near the headboard). Dad hopped in bed, his reddish face and disheveled silver hair contrasting beautifully with the white linens. I drew the comforter up for him. Within an instant, he reached for mom's hand, eyes closed, feeling around until he found her, and they held hands. I couldn't help but smile and take a mental snapshot of that image, hoping never to forget how tender and loving that moment was---a daughter tucking her parents into bed; a husband and wife holding hands.

Over a grin, he said "isn't it nice to have a daughter who can tuck us into bed". We laughed and he said "this is what you call, payback".

~E

Tilt-a-Mary

Mom's having more difficulty with balance and stability of late --really, ever since the bout with sepsis. Could be the tumor, could be her new chemo, perhaps a combination of all three, or could be residual effects of a late night tilt-a-whirl bender we aren't aware of. Whatever the case, she tends to bob around like a Bobo doll without a gentle hand on her back for support. Unlike the Bobo doll, she rarely bobs back to neutral.

Sitting down without back support is quite the unsteady affair. It's a slow tilt at first as she's "taking on water" then faster and faster until she's either on her back or tilted sideways.  When helping her get dressed, I usually sit down beside her and keep some body part (shoulder, arm, knee, even head) on her to keep her steady. One time, she did the unexpected and tipped to the side. We laughed and I said, well that's a new one! Another time, I was helping her with her shoes and she said she had a good grip on the bed bar (it's a hospital bed with railing). I slid her foot in and told her to push push push, cheered once we were successful and then looked up to find her at a 15 degree angle, nearly flat on her back. We CRACKED up and I said "well no wonder it was difficult to put your foot in, good grief" and she said "I wondered when you'd notice".

It's a similar process when helping her dress while standing. I usually keep my head, arm, elbow, something on her back to serve as a sensor as I pull up her shorts--just to help with her proprioception and to help me detect when things are moving slightly off-center.

It's something we embrace and crack up about as part of the 'new normal' (i.e. we don't make a big fuss about it or call attention to it...just help her find her neutral again). Yet, from time to time, she'll say "I think it's so bizarre how I can't keep upright. It's interesting how it affects my balance" as she's rubbing her head. One time, she said "it's right here" as she stroked the front part of her head where the tumor is located.

The Tilt-a-Mary draws a big grin on her face and ours each occasion. Seeing her big brown eyes staring back, waiting for help always and without hesitation pulls on the heartstrings. It's a comical yet extremely tender moment and you know then just as in every moment in life that you'd gladly walk through fire for her...if it would only help. In the meantime, we'll be the safety bar on her tilt-a-whirl. -- E

Coping Part I: Kid n’ play’s take on death (and other touchy subjects)

Alright, so my last solemn post for a bit...

A few weeks back, Diane and I had to sit through an agonizingly slow discussion on death and death’s symptoms, while Craig had his second Hickman put in.  Unlike popular belief, people go quietly, or so we were told.  I was surprised D sat through it, because she has a tendency to use her need for a fix (Coke Zero) as an easy out during awkward conversations.  Though the discussion itself was a bit ham-ball cheesy, the topic brought to light a few interesting questions like, when is it appropriate to talk about death?  Who’s right is it to initiate?  Should the discussion be merely hypothetical, or actually get down to the nitty-gritty? And does such a discussion invalidate one’s fight, one’s process?  In other words, can such a topic fast-forward a process when the real fight has just begun? I don't have any easy answers, but personally, I find it’s easier to consider this sort of stuff with my mom than with Craig.  I rationalize it as this:  a parent passing before a child is always in the cards.  That’s part of the game.  We’ve had numerous opportunities to play with the notion, spin it around a bit, and spit it out when it became too uncomfortable.  But the notion was always there, and in a way, priming us for the inevitability of losing a parent.  Though the possibility (stress possibility…still a lot of fight left) of losing our mom so early is absolutely heartbreaking, it’s still within the order of things.  Losing a sibling, well, that’s frankly not something many consider unless very late in age.  And sibling grief seems rarely talked about, as a result.  I call it the unwritten hierarchy of grief:  children often defer to their parents grief and try to be strong in that regard.  I’m, of course, writing from a so-called child’s perspective, so perhaps this may not be the case for a parent.  But I find that, for my siblings, it’s been mostly true.  We try to be strong for my mom, and, most especially, my dad.  We ask about their well-being and assure them that we’re doing fine.  We’re often advised by others that we need to be there for our parents, which is true, for that’s not only the cycle of things, but, more importantly, ingrained in our Lawler blood -- not out of a sense of obligation, but a genuine love for our parents, and interest in their well-being.  But it’s interesting, D and I looked through the book On Grief and Grieving, and not one section (as least from what I can recall) discussed a) simultaneous grief not brought on by tragic accidents or b) sibling grief.   I write this as a way to put dimension to something different to traditional concepts of grief.  The loss of a spouse is heartbreaking, and the loss of a child, unnatural.  The loss of a parent, a role model, a friend is absolutely painful.  And the loss of a sibling, a comrade, a partner in crime, and a best friend is, well, in a word, lonely.  Where this is all going, I haven't a clue.  With that said, I just tucked my comrade into bed… --J

Contingencies Part II

I’ve been thinking about this as well, and partly because I’ve been having a few heart-to-hearts with Craig’s Pathways nurse (PN).  His nurse is practically the only person talking about C’s short and long-term prognosis (this goes back to the whole idea of wanting to be pleasantly surprised rather than have the rug pulled out).  It’s a bit of an awkward situation, since Craig hasn’t really asked (nor has he talked about) his prognosis.  Though I’m speaking with PN, I feel as though it’s not my position to impose my own timeframe for discussing this.  His doctor should really be spearheading these conversations, and should give C the option of knowing what lies ahead so that he can plan accordingly.  However, Sorafenib is just getting started, so perhaps that sort of conversation is best left until after it’s had some time to work.  

Anyway, so PN has been briefing me on what to expect, and what we should have in order in terms of durable powers, etc.   Craig and I have been working on his ‘Five Wishes’ statement, which includes his durable power of attorney.  I feel the need to preface this with the following:  to draft and sign a Living Will does not mean C is nearing ‘the light’.  It’s more of a preemptive measure to make sure we know his wishes should anything unfortunate happen.  We should all consider these things regardless if we’re dealing with a serious illness.  The Five Wishes list was written by the American Bar Association’s Commission on Law and Aging and the nation’s leading experts in end-of-life care.  It starts with “There are many things in life that are out of our hands.  This Five Wishes gives you a way to control something very important -- how you are treated if you get seriously ill.”  This is something we should all take to heart.  Still, I’d be remised if I didn’t acknowledge that Craig and mom are perhaps in a different situation.  

Watching him fill it out, and say out loud his wishes was more than surreal.  Just five months ago, C and I were climbing the sides of mountains and traveling around some the best parts of Southeast Asia.   Now we’re talking about what he truly wants, during and after.  We tried to crack jokes about his wishes.  Some of the ‘wishes’ that were listed were just off-the-wall bizarre, like ‘I wish to be massaged with warm oils as often as I can be’ and ‘I wish to be cared for with kindness and cheerfulness, and not sadness’.  On the section that says ‘I wish for my family to read my favorite limerick’, he said, yes, this one:  ‘There once was a man from Nantucket, who kept all of his cash in a bucket’.   It's hard to believe that somewhere, some committee decided that these were the best wishes.   “Yeah, keep the one on oil, I like that one... and the one on limericks, that sounds pretty good.” I’d love to see the loser’s list.  Still, despite laughing, there was a feeling that, by doing this, it made it all the more real.  Like we were acknowledging the possibility…and that was tough. 

The Five Wishes indicates to what extent we are to ‘work’ for his ‘survival’.  In other words, how far he’d like us to go, should anything happen.  Through our discussions, I now have a clear understanding of what he’d like.  We went through his wishes with Dr. F today, and left a copy with him for safe keeping, so that now everyone’s on the same page.   I suppose knowing is part of our contingency plan.  My lifeline is C, Dr. F, and Pathways, though I understand E’s point about needing more training for more emergent situations.   PN mentioned that if we were to get to 'that' stage with C or mom, the recovery would only be temporary.  I’m sure there will come a time when their contingency plans will need to be redrafted, according to their wants and needs.  The best we can do is to make sure that their wishes are carried out and that they’re comfortable, if (and when) that time comes.  

I realize that writing in such a frank tone may be disconcerting, but I see it more as scenario building so that we’re not surprised when the time comes.  This is our life, and these are real scenarios.  I wouldn’t want denial or ineptitude to come in the way of their care.  They have enough to handle; they shouldn’t have to worry about us.  --J

Bronchitis and Brazilians

Well, we went back to the doctors today for C's weekly check-up, and it turns out he has bronchitis, if not the beginning of pneumonia.  He’s been running a fairly high fever for the past week or so, and had recently developed a wet cough.  We alerted Craig's doctor, and after listening to C’s chest, Dr. F decided on another chest x-ray.  Sure enough, something was brewing (we dodged a bullet, big time).  He's now on a 5-day antibiotic, which should kill just about anything.  Perhaps this was helping to drag him down.  Hopefully, by treating this infection, he'll get a kick back in his step. 

In other news, Craig’s been having some funky dreams again.  This time, he was going on a double date with Steve Buscemi and two Brazilian women (though Craig didn’t have a date??).  Apparently, Steve was wearing cologne, which prompted C to ask, ‘are you wearing cologne’. (I just tell like it is, folks.) Steve replied, ‘yes, but don’t tell anyone; this is part of my trick’. Craig then asked him if he dated much, and then dramatically put his hand on his forward, mimicking Steve’s response.  ??  He was goofy in his delivery, almost kid-like.  This was the most lucid and alive I’ve seen him in a while.  I wish I had recorded the moment; it was as though the old Craig was back, if only for a second.  Strangely, a few minutes later, he vomited. 

After cleaning up his vomit, I went to the family room to document our little exchange.  Craig called out for me, and asked what I was up to.  (He’s been asking for me a lot, which is comforting.)  I went into his room, laid on the other bed, and chatted while he rested.  He asked whether I’d find it strange that he’s been dreaming in different voices/ethnicities.  He said when his fever was at its peak, he was dreaming everything in Spanish.  His washcloth became a bandana and everything was segmented into little parts of Mexico.  Later, he dreamt in SE Asian, which country specifically, I'm not quite sure.  He also said that when he dreams, he feels like his stomach is laid out in little segments, similar to an accordion.  These segments also have separate ethnicities.  Apparently, a little Italian family lives in his stomach.  Cracked me up!

C also mentioned a conversation he had with Emily, where they were joking about his ‘deadbeat’ status.  As example: she’s always having to come over to his apartment; he never talks to her for any length and often falls asleep; he never buys her dinner or eats her home-cooked meals; he kicks her in his sleep (nightmares); he has a job but never goes, etc.  He often says that it’s frustrating that their ‘dates’ so far mostly involve her coming over only to watch him sleep or vomit. ;)  I told him that he’ll make up for it, soon enough. 

After this lucid moment, C vomited, making it 2 for 2.  Strange.  Anyhow, it was nice to have this exchange.  I hope more are to come. –J

Contingencies

We had a threat of 'severe weather' this evening. Clouds rolled in, things looked quasi-ominous, rained a bit, then wahla storm front passed us by without much action and we never paid it any mind...at least this night. It dawned on me, though, what DO we do if there was a tornado and we needed to take cover. Driving to a storm shelter in the midst of a storm is a bit unrealistic now, partly because mom's mobility has decreased considerably and partly because her walker and/or wheelchair make her one helluva lightning rod. I suppose we could take shelter in a central bathroom and wear helmets, as Diane pointed out is the latest in tornado fashion, I mean, precaution!

It brings up an interesting point for Craig and mom's situation, though--proactive risk assessment. What happens if... What do we do if there is a tornado warning or a fire (all somewhat tongue in cheek), but, more realistically, what do we do if one of them goes into cardiac arrest, or faints, stops breathing, you name it. Put on a helmet? Kidding aside, as the recent bout with sepsis shows, anything could happen--we dodged a big bullet that time. These are all good questions to ask and plan for since, hey, it COULD happen and only our mom has a true nursing background. We intend to 'caretake' as long as we can, for all circumstances, but some things just aren't T-ball and you have to have some plan and basic ability to hit a curveball when you step up to the plate....or have a capable pinch hitter handy.

Suppose it's never a good time like the present to talk contingency plan so that we have our pinch hitters warmed up and ready!

Chemo take, ummmm, 3?

And we're off with mom, as well!! She began her new chemo yesterday. It's a two-fer, one-fer, two-fer gig where she "takes two pills one day alernating with one pill daily".  Wuhhhh? Confusing to anyone else? Is that three pills in a day? Is there another pill to alternate with the two pills? Fortunately, there's not just beauty in our family and we put our minds together to conclude--alternate two one day, one the next day, two, then one, and so on.

Side effects aren't too extreme, I don't believe. We have noticed increased confusion and balance issues, which is likely the chemo, the fatigue factor, and the tumor playing pattycake together. Would throw anyone off kilter!  

Still, if mom were a sailboat, she'd be listing to port!

~E

Burglars

In an earlier post, Craig aptly referred to his new 'tenants' as squatters. Back in the day, when this cancer scored a "low" to "guarded" on the Craigland security threat level system, I made an analogy that the cancer was like burglars new in the "B & E". They picked the lock, crossed normal defenses and were sneaking around looking for prized possessions to steal until a light came on and then another and the burglars were scared away just in time before something more significant could occur. To see them in the house was a fright, no doubt, but they're gone, and you cling to the hope that they won't return. But, back in your mind, you realize that they now know where you live and how to break in.

Two years later, it seems they've returned and are packing heat.

~E

Well I've never been to Heaven, but I've been to Oklahoma

Round one of Maryland-Oklahoma-Denver rotation series has begun! I am now in Oklahoma after driving 22...eerrrrr, 27ish hours over the weekend. (Who's counting?) It seems that when you talk shop of all things cancer with the twin, you tend to miss critical exits and wind up closer to Canada than Oklahoma. It had been oh so very long since I'd seen northern Pennsylvania that my subconscious clearly took over and made it happen! Alas, I can FINALLY check that off of my to do list! All kidding aside, it was nice to take a drive down ol memory lane--the lane that took me to and from Cornell many a time (many plus one, now).  In any event, mom got a kick out of it and I'd do it over in a heartbeat just to hear that laugh. ~E

Chemo: Take two

And we’re off.  Fed Ex delivered Craig’s new chemo around 8:30 this morning, and by 9, the first dose was in his tummy.  It’s still early, but so far, no complaints of headaches, chills, or nausea, which are common side-effects.  Other less common (and more severe) reactions include: rash, blisters, oozing or severe pain in the hands or feet; swelling, rapid weight gain; rapid weight loss (the ultimate yo-yo diet…gaunt-swollen-gaunt-swollen!); and numbness, balance problems, and confusion.  For the most part, people do well on Nexavar (Sorafenib), so we’re keeping the ol’ fingers crossed.   

He’s been running a low-grade fever (around 100) for the past week or so, and continues to have wacky dreams/nightmares, as if he’s on the anti-malarial drug, Larium.  The latest involved a dirt-fight with an ‘Aztec kid’ and searching for a soup kitchen after spending some time in a spaceship (or something to that effect).  He woke himself up after shouting ‘sir’, as in “sir, whereabouts is the soup line?”  Dreaming about soup...yeah??

In other news, we had a nice birthday celebration yesterday, complete with a scavenger hunt through Stillwater (thanks L and S!), a Marcel Marceau impersonation (thanks mom!), and, of course, a virtual sing-a-long that only a dog could love.  All in all, I think D enjoyed her 30^th.  Craig was able to hang in there most of the day, but became sick late in the evening.  Still, a one-off event is small potatoes to what we’re accustomed to, and it’s nice to see him up a little more.  He and Emily were giggling like little kids yesterday.  I think they were reminiscing about their first date, where, due to miscommunication, they both thought they were being stood up by the other.   Anyhow, it was good to hear him giggle.   I haven’t seen (er, heard) him that happy in a while (kudos to E)!  

Craig just read a few of the blog postings.  I mentioned that it must be surreal to read all this.  He said yes, but that it’d be more surreal if he wasn’t on so many drugs, something he referred to as his Spinal Tap answer.    He said that if he were to write something, it’d be on how nothing in his life is normal.  He added that perhaps the only thing that is normal or routine is sleeping half the day away.  He’d like to go on walks, but is just too tired.  Short walks down the street poop him out, and typically induce vomiting, which, if it happens in public, makes him uncomfortable.  For instance, he became sick last Sunday while out on a picnic in Wash Park.  He was feeling pretty strong for most of the day, but then whammo, hello the Exorcist:  Cancer Days.   According to C, he ‘puked on the goose poop’ so it didn’t make much of a difference (i.e. adding to the landscape).   He’s limited in doing ‘normal’ things as his symptoms are so unpredictable, and carrying a spit-up bucket everywhere he goes is simply unsustainable.   There's gotta be better fit.  Enter Sorafenib.  I suppose we’ll just have to give Sorafenib time, but I hope, for Craig's sake, it's a quick worker. --J

To my sister, on her 30th birthday!

Happy B-day, D-spot!  I can’t believe this day is finally here.  It wasn’t too long ago when we were turning in Craig’s big 3-0.  I sent him a Samurai sword as a gesture for, well ...you know.  But, I figure with your luck on the bike, you probably won’t need any props.  ;) 

All kidding aside, really hope this turns out to be a magical day for you and that you can enjoy this as your special day separate from all the madness that is our lives.  We’ve been through a lot this past year, which goes to show that maybe the 20s aren’t as super fantastic as they’re cracked up to be.  I think 30s will be different.  Though you’ve been biking uphill for a long time now, I feel a long downhill ahead, and one with a strong wind at your back.  Hope this day marks the beginning of many good days to come…Lord knows we could use a few. 

Love you with all my heart, D.  We're there with you in spirit.  

J

Honest

There are some days, I just don’t know what to write; this happens to be one of them.  Today, I’ve found myself teetering on the fulcrum between anger and anguish.  Hearing Craig laugh, or watching him sleep keeps me in the middle.  There will be times I’ll stand outside his door and it’s all I can do to keep from crying.  Then I remember, Craig’s not crying.  If he can do this, so can I.  Little does he know I draw a lot of my strength from him.  I’m amazed at how he tolerates the onslaught of bad news.  I’m amazed at how he views each vomiting episode like it’s a science experience, asking me to record the volume and the consistency.   I’m amazed at how he can muscle through what I imagine to be fairly painful symptoms, if only to be awake for his friends.  He wants to do these things; he wants to be ‘normal’.  But I know it’s a struggle and the shifting postures and quiet moans reveal a more honest monster.  

Ironically, we’ve had some of our most tender moments during bouts of pain or nausea.  The other day, he told me he’d like me to hold his hand or buzz his leg when he vomits.  I’ve also been massaging his lower back and legs to help ease the pain.  He said today that he thinks the tumors have grown to a point of pressing against his spine and back muscles.   He’s also having difficulties fastening his pants, now that his belly is so distended (I hope he's just water-logged from the saline).  It’s hard to sit at his bed-side, and push IV meds into my 32 year old brother.  I look at his arms and see familiar veins, familiar skin -- the same brother I’ve known for 28 years.  And yet, a process entirely foreign to us continues underneath. 



I often catch myself staring at Craig, just wondering how this all came about.  Just tonight, we had a little discussion about how fast things can change.  A few months ago, we were traveling around SE Asia, with the only worry on our mind being, of course, our mom, and then what destination we’d hit next.  Never did we consider this as a possibility.  I’m so grateful for the opportunities we've had.  I wish more than anything we could go back to Raleigh beach, to gazing at the stars and laughing at how romantic the situation would have been, if only we were with other people (i.e. not cramping each other’s style).   How long ago that seems.

We’ve developed a routine, and that somehow makes our life feel normal.  But time ticks on in our new ‘normal’ and I can’t help but feel like there’s simply not enough of it.  As much as I think I’ve come to terms with our reality, there are times I look at him and just think ‘this can’t be happening’.  It’s a tough balance, and the best I (we) can do is to take one day at a time.   I only wish those just now coming into Craig’s life could see him at his best -- he’s a way of being as much as he is a person.  He’s made a lot of people laugh along the way, and still does, despite it all. His strength inspires us all to continue on, and to focus on the times we've had, and the ones to come.  Even as we say goodbye to elements of our old normal, we turn over another page with the anticipation of discovering new things to love.  Sad and a tad cheesy, but that’s coping.  --J

Mr. Pooh and Mama

Last night Mr. Pooh (Herbert, my 15 pound yorkie) slept curled up next to mama.  I walked in to find them both together, looking oh-so-peaceful that I had one of those AWWW moments. He seems to be very sensitive to her; didn't eat for the first couple days while she was in the hospital.  Anyway, I hope his little warm pooh-ness was a comfort to her last night.

D

And e, writing about your cats is lame. Writing about the awesomeness that is a yorkie-dog is, well, awesome!

Your eyes have died ....

Emily mentioned Craig's been talking in his sleep, and as she said, that night he dreamt of monsters, infusions, and the oh-so-scary stairwell.  Yep, though he squeezed and squeezed, he just couldn't fit through.  My response:  I hate it when that happens.    

We’ve been having some goofy moments together, which is nice.  The other day, C and I were waiting in the hall just before his 4th round of chemo.  Some guy was playing the song Daniel on the piano, and I mumbled to Craig, “I don’t know what’s worse, playing the depressing song Daniel, or playing the depressing song Daniel off-key.  It seemed someone got the beginner’s version of Rockin’ to the Oldies for the Piano, and was testing his skills at the hospital.  There’s nothing more comforting than hearing some guy practice, practice, practice when you’re waiting for chemo for a life threatening condition. 

And Daniel???     

Daniel my brother you are older than me
Do you still feel the pain of the scars that won’t heal
Your eyes have died but you see more than I
Daniel you’re a star in the face of the sky    

Gee Mister, what happens next?  Sure can't wait to see what tomorrow brings.  Uplifting, you betcha.  I’d pick the soundtrack from the movie The Shining over a song about some older dude with his puss-filled scars and a couple cataracts flying some red-eye to check out the rain in Spain... or whatever. ;)   -- J

Eenie, Meenie, Miny, Mo

We've been all over the map with regards to mom’s treatment.  November was particularly tricky as we considered next steps after learning George was back.  First, the doctors suggested surgery, followed by intensive chemo/Avastin.   Then, our neurosurgeon said the tumor was too small for another surgery.  Then the radiologist weighed in and recommended radiosurgery using Gamma Knife.   The Duke team said x-nay on the radiosurgery-ay, but the parentals weren't convinced.   While mom and dad discussed these options with the medical oncologist in Stilly, I contacted experts at UCLA and Duke, and Erin contacted an expert at NIH, who unanimously said NO RADIOSURGERY.   Essentially, the radiosurgery would have caused tissue necrosis and would have prevented blood from reaching the tumor site, which is needed in order to effectively transfer the chemo.  Anyhow, she started Avastin/CPT-11 one week later and was doing well until last week, when we learned, yet again, that her tumor is back.  She started her new treatment today, which pairs Avastin with another oral chemo.  All this maneuvering proves just how difficult GBM is to treat.  Still, some options are better than others and the oral-IV combo appears to be as good next step.  She seems to be improving from her bout with sepsis, and is ready for these next chapters of die, George, die.  It’s nice to hear a stronger voice on the other line; it gives me hope that we may actually turn this corner.  And that’s something!  --J

August

When we say it’s a miracle that mom is still here, it’s for a reason.  I think it’s safe to say, August was one of the hardest months of our lives (though April’s coming in at a close second).  The first night out of surgery gave us a false confidence that mom would be back on her feet in a few days, just as the doctors had predicted.  Instead, that first night marked the beginning of a downward spiral, from which she would take almost four weeks to fully recover. 

 

 Shortly after surgery and a recovery period in ICU, they moved mom to her own room, and to our surprise, they didn’t hook her up to a pulsox machine to monitor her breathing/pulse, despite having undergone major surgery on her BRAIN.  We immediately asked for one, and were reluctant to leave her alone since she seemed fairly ‘unstable’ at the time.  Once back at the hotel, Diane, Erin and I drafted our bunking arrangements so that one of the four kids would be with her, just in case.  Diane was first up to bat; E and I were second and third in the order, with Craig taking the clean-up spot, trading nights on the hard pull-out couch just to make sure she was okay.  Dad rounded out the order by filling in as relief pitcher during the morning and afternoons.  This was our routine for nearly a month.

 

Needless to say, our nights there were exhausting.  She’d forget to breathe which would trigger an alarm on her pulsox monitor.  We’d quickly have to help her puff into an inspirometer to keep her lungs inflated.  When she developed a rash, we were up every 15 minutes helping her put on Benadryl or scratching her back.  (She’d often say, ‘Oh Jill, that’s exquisite’.) During the day, we were in charge of turning her, bathing her, making sure she drank the appropriate fluids (she was on restricted water intake for most of her stay) and ate a full meal.  Most importantly, we were in charge of getting mom back on her feet, starting with her brain functions.  Days after her surgery, mom was barely herself; the blank stares were the hardest part of her recovery.  She didn’t recognize us, couldn’t put names to faces, and so on.   There’d be occasions when she’d look at us with an ‘I don’t know who the hell you are, or why you’re in my room, but I’ll sit here and endure it until you leave’ kind of gaze.  We’d each take turns holding her hand, but often she’d pull away.  One time, when dad asked her who I was, she looked away and mumbled I don’t know that person.  She then said I was her nephew.  (Double ouch).  We put up pictures of the family, the house in Stilly, our dorkie dogs and kitty cats, etc. to help jog her memory, and motivate her to get better.  She'd have lucid moments where she'd be roughly the same old mom, and then just as quickly, relapse back to being virtually catatonic.   One day, in particular, stands out.  This was the day she turned to me and asked for some water, and at that moment, I thought all would be okay.  I quickly called everyone to let them know she was ‘back’.  Unfortunately, her moment of lucidity was short-lived, and she quickly fell back to a more kid-like state, where she couldn’t follow simple instructions like ‘spit out your toothpaste’ (she’d end up swallowing it). 

 

The doctors were less than helpful at first, and responded to our queries about her lack of affect with answers like ‘don’t worry, that’s why you pay me the big bucks’ and ‘you guys are trying to predict the future too much’.  Frustrated at the progress and unable to confide in our mom, the five of us would resort to hallway discussions where we’d strategize on ways we could help (e.g. hanging photos, etc.).  Call it getting our ‘bang for our buck’, but at some point, the doctors discovered that her relapses were likely due to low sodium and potassium levels, which were also causing small seizures.  After reducing her fluid intake to 500ccs/day, she slowly but surely came to.  We quickly became the water police, and would alert her nurses (who seemed rather clueless to the plan) that she was not to exceed 500ccs.

 

In addition to the problems with memory, she also had a hard time detecting the left side of her body, something the medical field calls ‘left-sided weakness’.  The tumor was removed from her right frontal lobe, impacting everything on her left as a result of the brain’s mirror-image phenomenon.   It was funny (in a sad kind of way) to watch her move her right leg when directed to lift her left.  The left-sided weakness affected her vision as well, so that she was unable to see or recognize things on the left side of her peripheral vision.  There’d be times I’d stand to the left of her, and have the real sense that she didn’t know I was there.  We would massage her left leg and hand in order to get her feeling again, and taped pictures in strategic locations so that she’d have to turn her head to look. 

 

It seemed like weeks until mom was well enough to walk.  Her balance was off, and she couldn’t move her left leg (or both of her legs, for that matter) once we’d get her standing.  The short walks to and from the portable commode were exhausting for us all.  There were a few times when she’d collapse before reaching a chair; it would take all five of us to get her back to bed.  Again, the hospital staff was less than helpful.  Rather than encourage her to take one step at a time, they’d tell her (in a not-so-soft voice) that she couldn’t do it and that she had no business being out of bed.  Yes, walking was a struggle, but how do you improve if you don’t try?  Scaring her sure didn’t help!  (Funny enough, the day after being told she couldn’t walk, mom was walking down the hall – a major F-you to Nancy, the naysayer.  Never tell a Lawler they can’t do something.) 

 

Anyway, on top of physical therapy, we were also in charge of her basic upkeep, including ‘turning’ her to prevent bed sores, and bathing her.  It seemed their idea of a good wash was to sprinkle baby powder on her, and hope for the best.  There were several occasions when we’d come back from dinner only to find mom sitting in urine or feces.  On one occasion, the nursing staff left her in a crumpled mess, where she was slouched into the crease of the bed (imagine a pike position) and leaning to the side.  Her face was beat red from a fever.  Man, just remembering that moment … 

 

I’d like to say that with each day, we’d see subtle improvements, but it was more like one step forward, and two steps back.   It wasn’t until the third week she was finally stable enough to be transferred to inpatient physical therapy.  Once there, she thrived, and within a week or so, mom was outperforming everyone there.  She was discharged after a week, and was able to walk from our driveway into our home with the assistance of a walker.  Despite all the ups and downs, mom fought through it and recovered, through sheer will and perseverance.    

 

And so ended our little month of hell where every human emotion was thrown into the mix.  We had our highs and lows, our little fights and moments of real bonding, and, of course, our Mary sing-alongs.  (We, a.k.a. the girls, have a habit of calling our mom Mary or Mar-Mar, if only to annoy her….she just rolls her eyes.  Our dad gets a ‘sir’ or James Joseph.)  Her favorites were ‘Up, up and away, in my beautiful, my beautiful balloon (hit the high note), ‘Goodbye, so long, blah blah blah blah blah blah’ (from the Sound of Music), and, of course, ‘George, George of the Jungle, watch out for that …radiation’.  Yep, she named her tumor George.   

 

We also had tender moments where she’d relay stories of her life before meeting dad.  It was nice getting to know her as Mary Kennedy (and then Lawler) -- the woman she was (and still is) before becoming a mother.   She told us stories from when she was the head nurse on the pediatric ward of a major hospital (in Pittsburgh I think).  Ironically, she specialized in taking care of kids with advanced illnesses, including cancer.  Her stories are pretty heartbreaking, but you can tell through her stories that she loved nursing and would do anything to help her patients, including ticking off doctors.   She told us of the time she pissed off a bunch of doctors by removing the ashtrays from the peds ward.  Though she had many run-ins with the nicotine-deprived doctors, she never gave in and told them to take their habit outside, and away from the children.   She was a pioneer in many ways.   Mom received a Masters in nursing when Masters in nursing were rare.  She also taught nursing in Oklahoma for many years.   

 

Like so many, we’ve always relied on her for medical information and care.  It’s a strange reversal to be handling much of her medical care now.  I look at it as a much deserved pay-back for the years mom and dad have given to us.  Being there for her (and for dad) during this time is the least we can do.  -- J

You’re not going to bully me cancer man ...

Craig and I got into a bit of a tiff earlier this morning (early, I mean 6am).  See, Vlady the Vomiter was objecting to taking his anti-nausea meds, saying that they made him too tired, and that he shouldn’t have to take them.  Fair enough, but the regimen we're on is what the doctor(s) ordered.  He persisted (in a not so polite way).  After a few back-and-forths, I finally said “look, I’m not going to bend on this.  If you don’t want to be zonked, then try Ritalin.  I’m not going to risk backing down on your anti-nauseas just when you’ve stopped vomiting, and especially not when you’re about to take oral chemo.  It’s too risky.”  A 'so there', would have topped it, but I held back. 

 I get his point, though, and it’s a really hard spot.  He sounds drugged, so I can’t imagine how he actually feels.  We’re going to ask the doctors tomorrow if he can reduce his Benadryl intake, which may help.  And I’ve already switched up his Zofran and Ativan so he’s taking the ‘sleepy pills’ later in the evening.  He’s also trying green tea.  The fact is, though, he’s zonked most of the day, and that’s frankly no way to live a life.  Something’s gotta give.  This is about his process, and on the one hand, if the man doesn’t want to take anti-nauseas, then dangit, he shouldn’t have to.  The tradeoffs aren’t pretty and there’s no easy fix.  I wish I could go back to 2006 and change the course of things, but I can’t.  We are where we are, and we only have so many tools to play with.  He wants to fight this thing, and fight we will.  There’s still plenty of room left to tinker. -- J

Joanie

While in Michigan, it always stopped my pace when I heard mom refer to her siblings in tender names. Down the line from Aunt Donna, Uncle Bruce to Aunt Joan, there was something in the way she spoke of them or looked at them that made you smile. Ever the protective matriarch, she'd talk about her siblings during car rides home, recapping the days events.

A moment that stands out in particular was when she was ready to walk down the steps to the garage at Aunt Joan and Uncle Dave's house--a task that called for Aunt Joan. She'd say, Joanie can help...or some variation thereof. Regardless, it was the "Joanie" that would always give me pause and made me smile, so similar to the Jilly's or D-Spot's or Craigery's for which I'm familiar. It gave dimension to mom, not as a mom, but as a sister.

Aunt Joan would take position and navigate backwards down the steps as she held mom's hands....Dad would take care of the walker, mom's belongings, and be ready to open the door...I'd take up the rear, gently supporting mom's back.

This was our system, and it always involved Joanie.

Bathroom party

One night while in Michigan, I remember rising from a sleepy slumber to the feeling of something moving. I first heard her, then saw the metal walker slowly glide past the doorframe. Mom appeared seconds later, clad in her blue nightgown, head down staring intently at the ground. She disappeared towards the bathroom light, which we left on as a "nightlight" for just these purposes.

I arose to see if she needed any help. We squinted at each other and at the jarring light. Then, I felt another presence and turned to see Dad, who had also woken up to check in.

There we were--the three of us in our jammies, hair smashed every which way, each of us with one eye open and the other still asleep.

That's love.  

~E

Sleeping Beauty

Given the current state of affairs, when I visit Craig at home we generally spend a significant amount of our time together sleeping, which actually turns out to work in my favor.  As a teacher (apparently "The Teacher"), I spend a lot of time exhausted and sleep is generally in short supply.  Plus, sleepy time in the Lawler house continues to be quite the improv show.

Perhaps it's coming home for the first time in a few days or perhaps the return of the Haladol to the mix of anti-nausea drugs, but Craig was dreaming up a storm yesterday evening.  Part of what I love about this is the relatively coherent statements that he makes about his dreams:

Craig: mumbles
Emily: what?  (thinking he's awake)
Craig: maybe the IV wasn't a good idea
Emily: Ok. Well, good thing it's out.

And later as I'm half asleep I feel him move a bit next to me.  I open my eyes to see his left arm raised straight up in the air above him.  Startled, I ask him if he's ok, to which he replies, "I have to get through the stairwell."  "Are you going somewhere?" I ask.  "In this dream," he says.  Ok.  Later, he informs us that he was being chased through a decrepit (yes, his word, even in his drugged state) stairwell that was collapsing in places.  He had to squeeze through the collapsed bits and was having a hard time making himself small enough to do so.

As Jill is administering IV drugs later he starts to get that "I'm not feeling so hot" look.  Pushing the drugs sometimes makes him sick and we all wait on tenterhooks each time to see if the things that are supposed to help will cause more problems. 

Jill: (Seeing the look on his face) You still doing ok?
Craig: You're just giving me a lot of medicine.  It's going to fucking knock me out.
Pause.
Craig: (turns to Emily) I guess I'll just be your sleeping beauty for a while.

Indeed.

- Emily

The wonderful magic that is Jill

Not to brag, but I think it's only fair that I call attention to the fact that C hasn’t vomited since 9 yesterday evening.  This is after a string of upchucking episodes of, I’d say, an average of 15 a day.  A triumph, nay a miracle, some might say, but I wouldn’t dare go that far.  No, I think it’s more a reflection of the wonderful magic that is Jill (third person for dramatic effect).  Diane likes to think she’s the world’s sunshine, but I beg to differ, and now I have clear evidence to the contrary.  It is I, I the bearer of all things good and special (I’m the Mary…).  I could, of course, give Craig some credit, but I won’t.  Until pumpkin gets on the ticky tack and starts typing his damn self, he gets no say in the matter.  And if he tanks, well, that’s just the Evil we’re facing rearing its ugly head.  Not my problem.  Now, I must get back to my super wonderful caretaking; people who’ve reached this level mustn’t rest, not for a second.  (He’s now taking a shower…watch him step out and vomit.  I’d laugh, but of course not at him.)  – J

It’s all about the W

Craig got his butt kicked in Checkers, of all things.  This comes after multiple losses in Scrabble, Uno, and other tough brass-knuckle games.  The winner:  his girlfriend, Emily, street name the “Teacher”.  Schooled on the mean streets of Mattel and Fisher Price, she knows all the tricks and isn’t afraid to fight dirty.  How many a man has cowered to her ‘Qats’ and triple ‘pick fours’.  She’s beaten some of the best, most from the cruel halls of Westminster schools.  Crying cancer only emboldens; whimpers of pain merely fodder for the flame.  No sir.  With the Teacher, it’s all about the W.  I told C, we didn’t raise no loser, but alas, a loser he is – and a big one at that.   It’s not as though he’s just slow with words, or that he simply hasn’t figured out the whole number/color thing with Uno -- he’s bad at ‘em all.   He’s even lost at thumb wrestling for God's sake!  When you stack them all up, I think he’s down by 25.   Maybe he’s super intimidated by her slick street moves.  Maybe he’s simply toying with her.  Or maybe it’s the ADHD …;)  Either way, it’s gonna take the fella a looong time to catch up, and the odds ain't lookin' too good. But if Billy-Ray Cyrus can make a comeback, well ... --J

SosoSorafenib (by Genesis)

How it was meant to go... 

 

There’s this drug that’s been on our mind

Cleveland pimps it, all the time

SosoSorafenib  … oh oh

Now Sor don’t even know Craig’s name….

But it’ll work just the same

SosoSorafenib

 

Oh if the tumors, could just play fair

Tori’d be here, to fight anywhere

But they’re greedy, growin all the time

I feel much better with Sory now on board

SosoSorafenib … Sory's now on board

  

 Well, the latest is they’ve nixed Torisel.  Dr. Flaig stopped by today to tell Craig that the Torisel’s not working.  Apparently, Dr. Flaig just now had a chance to look over the scans, and though he initially thought a few of the tumors had grown ‘only slightly’ (based on the written report), the scans revealed that they’ve all grown substantially.  The idea is better to give ol’ Tori the can now, than hang on another four weeks only for the little guy to get his arse kicked even more. And if we waited another month, it may be too late.  So, enter Sorafenib (or Nexavar by brand). 

 

Sorafenib is a multi-targeted kinase inhibitor (much like Torisel, I believe) which interferes with the growth of new blood vessels within tumors.  It’s been used to treat people with advanced metastatic kidney cancer, and clinical trials based out of the Cleveland Clinic (hence the reference) have shown some promise in reducing tumor growth.  Unlike Torisel, Sorafenib is an oral chemo agent, which is taken twice a day, every day.  Now, some may wonder how a serial vomiter is to keep down two chemo pills -- which, by the way, also cause nausea -- twice a day.  Fret not, we have a solution, and that is….keep doing what we’re doing, and hope for the best.  Pump fist, yes!  Craig will resume his Haldol (pity his multiple personalities) and will increase his Ativan, with the hope that we can dope him up just enough for him to keep these things down.  Ritalin may well be our best friend in all of this, but he’s yet to try it.  We’re giving the pain patch and everything else a chance to settle before we try tackling his ADHD.  Priorities, priorities.

 

I asked Craig how he was doing with all of this.  He said that Dr. Flaig seems to have the right idea, but that it’s disappointing he’s now on his second best option, and so soon.  Still, he’s eager to see what Sorafenib may have in store.  So, here’s to hoping.  And last but not least, his bone scan came back negative.  Thank God for small favors, sheesh!  -- J

 

The beast of burden

This whole situation sucks. That in itself is a massive understatement. I just want my best friend to be better and for life to get back to normal. I used to always be the guy that showed compassion via the opposite method (e.g. Craig if you do not get better I am going to stick my foot in your ass). Believe you-me, I had that conversation with him on multiple phone calls. I still want to say it because in a way if I could, it would imply Craig has/had a silly little cold that will just go away... That was what I thought was happening when he told me he was tossing chunks for a few days... Little did he tell me or I knew, about a week later, that it had continued in his absence of calling. I just assumed he got all better. Cancer was not even a thought. So now we are where we are. I call my best friend and ask him how he is doing and I know it sucks. He doesn't have to tell me anything. I can tell from his voice. Sometimes he sounds normal and then other times he is tired. And, coming from Craig, if you have known him most of his life, is not abnormal (wow commas). So now I just want to tell him I'm going to kick his ass if he does not get better, but I cannot. I feel for the immensity of the situation in front of him and the rest of the Lawler family. I cannot demean this beast of crap that grows in side of him because now I have been touched closely by the shit known as cancer and I sadly respect it in it's adept skill at whittling at my best friend. So now I do not want to kick his ass, I want him to survive so that I can have the pleasure and ability to continually threaten and possibly kick his ass in the future.

Fight on my bro! Love ya man!

-Stephen

Cancer Pain

"Can I get you anything?" -- me

"How 'bout a new lower back." -- Craigery (April 14)

Before diving into a more solemn post, I thought I’d lighten the load with a little story.  Craig tried calling a nurse the other day for a shower.  This is done by pushing a little black button on his bedside, and then wait, wait, waiting for a response.  A few moments later, a CNA piped in with a cranky ‘I know, I can hear it, I’ll tell your nurse’ and then hung up before Craig could ask for his shower – the reason he pushed the button in the first place.  You see, his monitor had gone off just at that moment, leaving ol' CNA to think Craig was just calling to complain about the beeping again.  Craig’s response?  A mumbled ‘and thanks for listening’.  

Also, I caught C's nurse (youngish, semi-handsome, fly-fishin' type), checking himself out in the mirror as he rinsed the vomit from Craig's throw-up bucket.  Uh...Fabio, perhaps we could save the muscle flexing for after C's good-n-done upchucking his insides??? Thanks.

And now to the real stuff…I always feel like I need to preface this with a 'danger, danger, semi-not-so-happy stuff ahead'.  Anyhow, I asked Craig how much he wanted to know about mom’s condition, and how much he wanted me to convey (through the blog) about his situation.  He said he wants to know it all, and that he’d rather people know how he’s really doing.   So, this is how he’s doing.  (As Matt Holliday says, baseball’s day-to-day.  So, too, is cancer.  There are good days, and not so good days.  These comments reflect an honest account of a not so good day.  With hope, he’ll be whistling a different tune in the near future.)

“My pain seems to be increasing, and it’s a different kind of pain.  I have to fidget around to find a comfortable resting position, and I’m always slightly uncomfortable no matter what I do.  The tumors seem to be hitting the nerves, so when I move out of a position, or try to get up from the bed or chair, they tend to trigger.  My hips and lower back are starting to hurt from all the sitting.  My vomiting seems to be increasing, though I haven’t had a meal in over a month.  I miss the days when I could drink unlimited amounts of water.  Whereas mom’s situation is pain free and debilitating, mine seems to be painful AND debilitating.  I’d like to go back to work, but if I get tired doing virtually nothing, I can’t see how I’ll ever be in a position to work.  And I don’t want to mortgage my life out to the government by advancing all my leave.” – Craig (April 11, ‘08)

He's been staring at the ceiling, biting his lower lip -- something I've grown to know as Craig's worried look.   If he’s not in excruciating pain, he’s either vomiting or conked out from all the drugs.  He vomited nearly six times Thursday night, and about eight times on Friday, though the vomiting seems to have tapered off over the weekend.  He now has trouble walking because of the pain, which the doctors have dubbed ‘cancer pain’.  When it’s at its peak, I have to help him in and out of bed, so that he can relax his stomach muscles as much as possible. We’ve been putting heat packs on his lower back to help relax the muscles.  I joked that I’d be happy to rub hot oil on him "as often as possible", which made him smile.  (Tad ridiculous and somewhat creepy? You betcha, but hot oil is actually listed as an option in his living will.  He, of course, declined.)

Even the shortest conversations seem to wear him out.  He’s often unable to ‘visit’ with friends – in person or on the phone – for more than ten minutes.  And when he is able to communicate, he’s often too drugged to remember what he said, or what was said to him.  The doctors are considering Ritalin and more pain meds to help improve his quality of life, but he doesn’t want to ‘burn all his cards’ so early in the game.  Pushing through the nausea and pain just exacerbates things, and makes him nauseous to the point of crashing.  They’ve given him a fentanyl patch which seems to be taking the edge off, but it also causes drowsiness.  The reality is the pain will be there unless we can a) remove the tumors through surgery or radiation; b) get the chemo to work; or c) dope him up on morphine.  By default, we’ve had to go with the latter, which has its own drawbacks (e.g. fatigue).  Dr. Stabler told C that if the tumors are still growing, than the Torisel is probably not working.  Dr. Flaig, Craig's primary oncologist, syas that the tumors have grown slightly, but that the Torisel may not have had enough time to do its thing.  Craig is still scheduled to receive chemo as planned, which I think is a good approach.  C agrees, and said that it may be premature to end Torisel.  However, he also said that he'll likely have to endure these symptoms (and others) until the end.   While this was extremely difficult to hear, in a way, I was glad that he felt comfortable sharing.  It’s back to the tricky balance of being hopeful but realistic.  We don’t want to be so hopeful that we give Craig the impression that we’re out picking daisies in la-la-land.  I don’t want him to feel any pressure to do anything more than what he’s doing.  On the other hand, we’re cautious of being so honest with what the doctors say, or about his day-to-day symptoms and what they likely mean, that he loses hope.  To write our reality in blatantly honest terms does not mean we’re throwing in the towel, or that we aren’t hopeful.  Indeed, hope is what sustains us.  We’re still looking for better days ahead, and believe they’re just around the corner.  We’re cautiously optimistic, yet aware of the very real battle we have before us.  For me, knowing the odds and trying to defy them is a heck of a lot easier than not knowing and having the rug pulled out.      

That's one way to enter a garage...

To Jill's "and yet you smile" comment I would add "and sing". In fact, I was happily singing Soulshine (because it makes me happy) when wammo--I "apparently" didn't clear the garage wall when parking. Immediately I said, "well that's one way to enter a garage. I'm heeeeerrrre. scrape scrape scrape" (in mom's voice), and went back to laughing and singing. Add 'go to body shop' to the to do list...after, 'pay your taxes' of course. Cracks me up. You just can't write this stuff. As a human factors nerd, I must say that their garage design is aaaall wrong. ;0)

Anyway, talked with Craig 30 minutes ago. He and Emily are watching "Pirates of the blah blah blah" as he receives a blood transfusion. Turned out he was pretty anemic. Whatever it is---the blood boost, the morphine patch---he sounded better and it sure was nice to hear.

Dogpile

It sometimes seems that the 6 of us are lined up, face down playing what was once an innocent game of dogpile. It started when Craig got "baby cancer". Not that it was cancer of the baby and not to diminish the seriousness of his disease, but that at the time it seemed relatively innocuous in the cancer world. He, in fact, was told he had a nearly 0% chance of recurrence. At the time, regardless of the statistics and assurance that it was contained, it was absolutely horrifying, life-altering, and confusing for our family. So, "ooooof" groans the family as that issue climbed on. One by one, a new "something" adds to the dogpile and each time we adjust, wriggle around just enough to evenly distribute the load and wait for more. Add to it, putting down our family dogs, a sick cat, big body slam from the GBM, another wammo from the Chromophobe and pretty soon we're in a pile you can't simply push up and walk away from. It might be easy to be stuck in a moment feeling down and out, weighed down by all those "somethings", but with a little more twisting and maneuvering, we can shift just enough to catch our collective breath. I would agree with Jill that despite the ridiculousness of our lives, we can still find our happiness without tooooooo much effort.

Then there's that 800 lb gorilla, slowly climbing a ladder to get a better angle for his bodyslam debut... 

~E

Smiling

Sometimes I’ll just sit here and watch him sleep, his quiet snore a nice distraction.  He looks so small in his bed.  As the nurse says, “he just kind of blends in”.  He’s been moaning a lot more and it seems nothing eases his pain.  I can give him meds and a heat pack for his back, but really, this is one man’s journey through cancer.  In the space between pessimism and optimism is our strange reality.  It takes a certain level of dexterity to battle through all that we have and sometimes it’s hard to keep moving when our little green pasture seems like a mine field, and the hope we cling to seems so bleak.  Yet still we manage, and I think doing a darn good job of it.  I was telling our story to a good friend of mine, who, by happenstance, was in Denver for a week before traveling on to Nepal via Bangkok.  When telling her the latest, she softly said ‘and still you smile’.  I smile because I’m happy.  Through all this profound sadness, I’m honestly happy.  I’m able to be with one of my best friends as he goes through this important process.  I get to witness the snoring, the moans and groans, the long-winded Checkers games with Emily, the strange little sayings like ‘your evil is growing tiresome’.  We realize that the time we have together is the time we have.  We’re doing our best to make the most of it, while keeping things as normal and natural as possible.  We continue to fill our days with laughter when it counts, and tears when they're necessary.   Though being here is hard, I wouldn’t trade it for the world.  I’m grateful for my brother.  I’m grateful for our little pod called family.  I’m grateful to be here.  That’s why I smile.  -- J

Poppin' a wheelie with Mama (or, Mama hold onnn!!)

We are finally home. After waiting most of yesterday afternoon for the new equipment to be delivered, they finally got her discharged----at 4:15.  Mama was sitting in that chair, scowling, looking at the clock, staring at the door, waiting to bust out so she could go to the retirement party.  Every now and again she'd revise her plans for getting ready. "I could just go home, put some deo on and wash my face," became "I could just put some deo on," which then became "You could drive into the Atherton basement...."  She was bound and determined, regardless of the fact that the person who would be pushing her reeked of b.o., was wearing a highly inappropriate shirt a-la craig, and was really, really, really coke zero deprived.   Anyway, we got her into the car, which is becoming problematic because the buckket seats are too deep and she can't sit back far enough to swing her legs in.  She ends up being half slumped and on her right butt cheek.  It's not unsafe or painful, just awkward and uncomfortable.  Maybe a draw sheet could work.  Anyway, we got home at 5 and she tried to use the walker from the car to the front door, but got too tired.  So, out came the new wheelchair!  However, no one told me that you can't even go over little bumps straight on.  Mama bought popped out of the wheelchair when I rammed her over the lip in the cement on the porch.  Ooopsies.  We both started cracking up.  Then it happened again when we tried to get onto the carpet.  Like I've said before, cancer has its moments of hilarity and fun.  I'm tempted to take her out today and whip her up and down some curbs, too!

Fur Elise

As I waited on hold to discuss payment options for my recent state tax 'discovery' today, the pre-recorded operator switched to waiting music. Instantly, I started cracking up and crying all at once. You have GOT to be kidding me!! It was Fur Elise--mom's one and only piano song that she'd play time again. What are the odds. I could picture her hands gliding over the keys. How she sat on the black piano bench. How she moved. Nice to have the picture in my head...

Dad

Dad deserves a post all of his own today. Today, he OFFICIALLY retired. Yes, he mini officially retired back in the fall from his 30 some odd (35???)  years of shaping the young poli sci minds at Oklahoma State University. Yes, he hasn't taught a course since then. But today, the department celebrated his service with a bon voyage (albeit double billed) retirement party. We had all hoped to be there for his big celebration. I know I earmarked the day in my outlook calendar. As of last week, Craig and Jill were verifying Craig's "travelability" as if doing a paruchute check before jumping. Even today, mom was hell bent on busting out of the hospital, running home to freshen up, and then joining her husband for the day he's discussed for the last 5 years (at least!!!).

As he says "...the best laid plans...". I doubt he expected any one of us to attend. It's just that 5 years ago (at least), when the thought of retiring became more a reality, I'm sure we imagined a different setting under different circumstances. Whatever the circumstances, his friends and colleagues were there in support...his family was there in spirit and heart. 

 Way to go dad!

Smile through the rain

I sought live music on Tuesday as that seems to be a decent source of distraction. As the band started and the lead lady played with her MAC computer, I murmured over a smile (perhaps louder than I intended) "holy cacophony!" followed by a slow "what the heeeelll???". Cracked up inside, of course. BUT, to my enjoyment, it meandered into something more euphoric than discordant and I left quite impressed at these young musical whippersnappers. 

Tonight, I took myself out, yet again, to a local restaurant to feast in their live music offerings and perhaps distract myself from recent events (bonus, right!). I was distracted all right. It was a crapfest like I've never heard! Cracked me up. Geneva convention protocols need amending; I think we have something here. There were moments when I asked myself, 'would it be rude if I plugged in my Ipod?'

I'm being mean. They weren't THAT bad. But the telling moment was when the 'monsoon' struck at the same time my check came. Band or monsoon. Band or monsoon. Tuffy. I chose the rain. (Am cracking up still).

The rain bent sideways to no surprise. It was indeed quite a rain storm. What I was looking for, however, was the tornado. SURELY there was a tornado in the area given the way people were sprinting and panicking. Alas, just rain. What's the fuss over??? I hiked up my pants and went a' strollin sans umbrella (didn't bring one).

The rain splattered my glasses and drenched my clothes as I walked home, and I couldn't help but smile and think, "damn straight....that's how we do!". Instead of weathering the storm indoors, we walk in it. We take it on no matter how hard it pours.

Uncle!

As Jill mentioned, I was given a whopper of a surprise last night when I realized that I owed all of my state taxes, better known as $5000. It's the year that keeps on giving, folks. 2007 began with a bang when Sam was diagnosed with "your cat has two weeks to live" Feline Renal Failure. (Yeah, Sam. More than a year and counting. Take THAT polly pessimist!). Months later, by random luck, a tree fell on my car...only my car! Ya had to be a hater, mother nature. Tste. This, of course, ruined the rods and every other expensive part of the car.  Then, we had mom's diagnosis followed by Craig's... So VERY glad the IRS at least has our back!! Now, Jill might be in a pickle since she's playing chicken with arbitrary 30 day rule, having spent some time in the states taking care of Craig.

In taxspeak (tis the season), there are definitely 'penalties' to cancer, we have found. But, there are few means to declare 'exemption' from it.  Would the word uncle help? If so.....um, uncle.

~E

Quotes

On being 'psychotic' …

“I may have cancer, but at least all of my personalities are happy.” – Craig (on being on two anti-psychotics to help with nausea)

Craig and I were watching Law and Order: Special Victims Unit the other day, which, by the way, is also mom’s favorite show.  Anyway, during the episode, Dr. Wong whipped out Ativan and Haldol to calm down a paranoid schizophrenic.  Pleeaaase, we have that AND morphine.  Good to know just in the event D-spot flips her lid again and starts talking about pink people with megaphones.  We can just zap her with the good stuff. ;)

On staying motivated …

When I mentioned to C that people tend to describe him as especially ‘determined’ and ‘positive’, he said “well, I just try to make it through the next obstacle, and that damn well better not be getting another Hickman.  If so, I think it’s only fair that the technician also gets a Hickman, only for it to be ripped out.  That would be the only just outcome.”  -- Craig, a.k.a 'the forgiver' 

On writing ...

"I'd write if I wasn't so damned tired." (said with a smile) -- Craig, the energetic 

He asks often about the blog, and wonders if I've written on various events of the day. We have a system now where he talks, and I type.  I figure that's the least I can do, given his discomfort.  It's just nice to be able to share his perspective. 

Hickmans, tumors, and payin the freakin taxman

From now on, Thursdays are off for planning big events -- they seem to be especially bad days for the Lawler crew.  As example:  last Thursday, mom fell ill with sepsis; a few Thursdays back, Craig had to have his Hickman replaced; and not to be outdone, yesterday (a.k.a Thursday), Craig was admitted to the hospital with probably the worst pain he’s had in weeks.  But that’s not all.  Simply vomiting six times in a few hours would be child’s play considering our track record.  To make last Thursday a worthy candidate for the bad Thursday bunch, Craig would need to, oh I don’t know, have something happen to his Hickman line.  Bingo.  Apparently, Susie what’s-her-face from the CAT scan place (sure there’s a more technical term for it) thought it’d be a good idea to stretch Craig’s catheter line across the room, and then have him hold onto the line as he entered the CAT scan machine.  Just a classic case of ‘well it seemed like a good idea at the time’.  Unfortunately for Craig, her good idea turned out to be a real-life catastrophe.  One of the lumens on his Hickman snapped just as he entered the machine.  It seemed she didn’t allow enough slack from her IV stand to the CT table.  Whoopsy.  He’s lucky she didn’t pull the thing right out.   So, down one lumen – the other lumen is reserved for his nutrition – the nurse had to put an IV in his forearm, and we know how much Craig loves those.  We’re now waiting to find out whether they can simply patch it up, or if they’ll have to install yet another Hickman, the third in almost as many months.  Talk about kicking a guy when he’s down.  Diane said that our mom’s pick-line may also need to be removed, as it’s already plugged (from what, I don’t know).  Maybe the moral of the story is don't put tubes in Lawlers.  Just say no!

And now the tumors…

It looks like some of Craig's tumors have grown since his last scan.  So much for no whammies.   Still early days, so we’re not reading too much into it, but it’s hard not to feel a little disappointed that the Torisel hasn’t at least stopped the growth.   Our money’s on the comeback kid with a strong second half finish (we're 4 wks from an 8 wk benchmark).   The family motto is to fight fiercely, and that’s what we plan to do until Craig tells us otherwise.

And here's to pouring salt on the wound …

To top off a bad Thursday, Erin learned she has to pay the IRS an extremely HEFTY fee due to some glitch with her W2 form.   It’s like the IRS just ran up and gave her a whiplash inducing push to the back.  And I’m not talking about a fake WWF sort of push.  No sir, more like an Ultimate Fighting-did I hear uncle-can't feel your legs kind of blow.  Not too sportsmanlike, but what can you do.  For me, expats are exempt from filing taxes up to a certain amount if they’ve stayed 330 days out of the country.  However, I’ve likely exceeded that as I’ve traveled back from Thailand in order to take care of C and mom.  Tough break, but I wouldn’t do it differently had I the chance.  We’ll figure things out… we always do.