A Wounded Heart

I'll always remember pulling into the driveway back in July, just before Mom was scheduled to undergo surgery. This was my first time to be in Stilly since September 2005, when I left for Thailand, and though a few buildings had cropped up, everything still looked the same. I remember the drive from the airport. D and E picked me up and gave me a crash course during our long drive home on what to expect. I remember passing stretches of golden farmland and commenting on how pretty it looked contrasted against the setting sun. I remember being a bit nervous as we drove into the driveway, and then, I saw Mom standing in the doorway. She smiled and didn't say anything. As I walked up the drive, I just whispered ‘hey, Mom' and gave her a big hug, which was all that was needed.

Tomorrow, Erin and I will make the drive back to Stillwater from Denver, and though I know Mom's gone, I'll find it difficult not to envision her standing in the doorway, waiting to welcome us home. Though we've had eleven months to prepare, her passing still seems so sudden. We'd been living so long with this day in the future, it's hard to believe that it's now our reality. The permanence is overwhelming.

It's revealing to say, but since Wednesday, I've woken with nightmares, first of Mom's passing, and then, of C's illness. There have been a few nights where I've bolted upright in bed, with arms stretched forward towards C, as if to hold on. I asked E if she had noticed, and she replied, "I was having my own nightmares to notice yours." It's a desperate and absolutely powerless feeling. I wish more than anything that we could reverse course, hit pause like we'd do our old Betamax, and simply breathe. Instead, we must move forward; we must make the drive to Stillwater and close one chapter of a two chaptered book. I'm somewhat terrified of going back; there's finality to heading home. Being in Stillwater means Mom's really gone, and I'm not sure I'm there yet, mentally.

It's hard to get ‘there' given how quickly things have changed. One moment, Mom was on the up and up and was talking to the nurses about being discharged. Then as quickly, things changed. One moment, Mom was leading an Upward Bound summer camp, and then as quickly, things changed. One moment, Mom was traveling around Asia, and then as quickly, things changed. One moment, Mom was with us, and then as quickly, things changed.

And in the midst of all this, there's C. I just took a pause from writing in order to give C his evening chemo. He was mumbling something about guts and tubes, etc. - in other words, he was clearly out of it. He had vomited just a few hours earlier, so we gave him his evening bolis of meds one hour early; hence, the dopiness. We had a nice discussion earlier about Mom, where, for the first time in a while, we cried and reminisced of old times. C tires quickly, so conversations have been hard to come by. Still, despite his own discomfort, he's expressed his wish to be a part of the process, and to grieve Mom personally, and as a family. We're keeping our fingers crossed that his blood levels will be stable enough for him to fly.

It's hard to convey how surreal this feels, and how absolutely difficult all this is. Thankfully, we've been able to call on friends and family for support, without which we'd feel lost. Indeed, we feel overwhelmed by all the love and support we've received these past eleven months, and now is no exception. We deeply, deeply appreciate it. Mom was truly loved, and that shows. It's comforting to know that, though we're leaving Denver with a wounded heart, we're heading home to community of support.

After we lay Mom to rest, I'll likely return to Denver to help C with his process. That's what I promised Mom, and frankly, there's no place I'd rather be. -- J

L.S. Causes Cancer

(Tongue in cheek ...)

Just before learning of Mom's cancer, I bought a book by an irritating author whom I shall refer to as L.S. This was my first encounter with the author, and since she had recently won an Orange Prize for her work, I thought, heck, I'd give her a go. Big mistake. I remember boring Mom to tears back in August as I read passages from her book, and frustrating the others with her circuitous, and oftentimes esoteric, paragraphs on this, that, and the other. Her language seemed more a reflection of her own high-brow personality, than a true portrayal of her main character, as clearly demonstrated in her biography, where she continued to use archaic language to describe her wonderful accomplishments and peripatetic life. To steal a few lines from Don Quixote:

And as this piece of yours aims at nothing more than to destroy the authority and influence which books of chivalry have in the world and with the public, there is no need for you to go a-begging for aphorisms from philosophers, precepts from Holy Scripture, fables from poets, speeches from orators, or miracles from saints; but merely to take care that your style and diction run musically, pleasantly, and plainly, with clear, proper, and well-placed words, setting forth your purpose to the best of your power, and putting your ideas intelligibly, without confusion or obscurity.

In other words, dumb it down sister! Why I harp on old L.S. is due to the fact that her inability to speak plainly caused my family much grief, as, out of frustration, I felt the need to read examples of her inane language aloud.  They grumbled and sighed and feigned strokes just to have me stop. But alas, my annoyance of L.S. was too powerful to keep at bay. I preached and preached that, in an effort to appear sophisticated, she sacrificed an otherwise personal relationship with me, the reader. William Carlos Williams, Alice Munro, Hemingway, they all had a knack for speaking convincingly through simple language. How this young author missed the memo was vexing and worth relaying to the rest of the fam., if only for a little entertainment. When the family fled, Mom, the captive, was the proverbial last man standing.

Knowing all along that L.S. may have had a hand with Mom's diagnosis in August, I made the mistake of picking up her second novel just before Craig was diagnosed with R.C.C. The second novel picks up where the last one leaves off in irritating, high-brow rants. So, to recap, I bought a book in July and then Mom was diagnosed with cancer. I bought another book in February, only to have C diagnosed with cancer. If A+B=C, carry the two, add the one ....the only logical conclusion is L.S. causes cancer -- that, or a really bad headache. Either way, I now realize the cruelty and injustice involved in bringing the rest of the fam. down by reading. Mom wasn't too pleased when I offered to read her passages from her latest. In fact, Craig asked just the other day why I keep torturing them with this drivel. I'm not sure, exactly. Good question. L.S's material has become such a fixture of our life, it's hard not to... (C, D, E, and Dad know what I'm talking about...) -- J

Firefly, keep on shining

The days leading up to Wednesday seemed like catching fireflies on a summer night. They'd blink sporadically, giving direction. We'd run towards it certain we're near. Eyes wide, we'd wait for another sign, another direction in which to run with arms outstretched, hands open waiting for the chance to catch the light and watch it beam in our hands---only to let go. We'd run, and wait.

For the weeks leading up to mom's passing, it seemed we were chasing fireflies, clinging to their luminance if only temporary. One day it seemed skilled nursing was optimal; so quickly tides changed to reveal hospice as a likely candidate. Then, the lightning bug moved too fast even for hospice to catch. She wasn't one to be caught anyway--not her care plan, not her essence. We stayed true to her path as long as we could keep up and waited for her light to give direction. She led us to where she was--peaceful, content, ready to be caught--and we held her in gentle hands for her final moments, after all.

As I walk through life, there will be flashes of mom much like a lightning bug--moments where she feels like she's holding my hand, moments where she's whispering "I love you sweetheart", moments where she's just out of reach. I'll rely on those moments just the same to give me direction, looking in the open night for another moment where I might see her again...

I miss you Mom.

E

The Plan*

"I gotta fight for my life here, people, so get outta my way." - Craig, after watching the 9News interview (June 27, 2008)

"Fighting cancer is like eating yogurt with a fork ... freakin' frustrating." (Jill, mumbling to herself while in Craig's hospital room, April, 2008)

Craig was indeed admitted to the hospital the other night, and has since been discharged after adding a few more pints of blood to his circulation. Yet, we still walk around with the proverbial question mark above our heads, hoping it will soon switch to a lovely (energy efficient) light bulb tomorrow. We await word as to whether his blood loss continues (hemoglobin levels drop) or if we've reached some semblance of stability with the increased Factor VIII infusions. If stability is our friend, then we hope he can fly to Oklahoma on Wednesday to join us for a beautiful service in celebration of Mom, which is tentatively planned for this Saturday. If he is NOT stable (i.e. levels dropping precipitously), then we'll need emergent scans to get a better idea as to whether a tumor is bleeding, etc. Though he seems more energetic, and was even able to attend a Cherry Blossom festival, something still seems amiss. We are "staying the course" as per Craig's request until we learn more. Diane and Dad are flying to Oklahoma as I type. Jill and I (and, oh yes, the cats) will be driving tomorrow depending on Craig's news, and Emily and Craig will arrive on Wednesday, on a Willliams Energy flight. With any luck, our plan's asterisk will be removed tomorrow--one way or another.

If the rug wants to pull out from under us, then it will take a good tug...

~E

So Mary Climb In ....

For some reason, Bruce Springsteen's live version of "Thunder Road" has always held special significance for me. Frankly, all songs with Mary remind me of mom, but his lyric "So Mary climb, it's a town full of losers, I'm pulling out of here to win" is particularly poignant. I remember listening to that lyric over and over as I streamed past Kansas farmland towards Denver. I pictured Mom as the hesitant Mary waiting for her moment to drive off into the sunset, and wondering to myself when that would be. Cliché and a tad cheesy -- and I suppose that makes Dad Bruce Springsteen -- but, what can you do. Thoughts are thoughts, and memories are memories. Anyhow, I remember getting a bit teary-eyed singing those lyrics to her while The Boss performed Thunder Road during Tim Russert's funeral. She was laying on her hospital bed crying at the coverage, while I massaged her hands with lotion. It's those memories that sustain me, and, at the same time, seem so far away.

All this jumping from crisis to crisis, confronting and handling each situation as we go, has made my brain and body tired. The past few days have been no exception. Since Mom's passing, we've launched into crisis mode #847 with C's admittance to the hospital to treat anemia. Thankfully, his body has responded well to the three pints of blood, so he was able to return home after spending less than 24 hours at the hospital -- a Lawler record! Though he was discharged today, and seems to be fairing a bit better, we're still not sure why he's losing blood. Most signs suggest he's bleeding out, but just where, we're not sure; he'll undergo further blood tests on Monday to see if his blood counts remain stable. If so, then we'll proceed on as planned. If not, then we'll have to consider other tests/plans.

It goes without saying that returning to the hospital just two days after Mom's passing was a tad emotional for all of us, not to mention physically exhausting, especially for C. To have to go through this so soon after Mom is simply unfair. We haven't had a chance to slow down, decompress, and really consider the pain of losing her. I've been trying to set aside time for myself to remember mom, my last moments with her, and all that has transpired. But, even in those moments, I can feel myself shelving my emotions. My brain and body are telling me "there will be time for grieving, but first, there's Craig." I recognize what's going on, and the effectiveness of defense mechanisms during such times of crisis. But there's something to grieving Mom in the moment.

And as for grief, what it looks like, I'm not exactly sure. We seem to be laughing more than crying, which, for me, feels like a more natural way of grieving. People find ways to cope during traumatic times - my coping strategy seems to be dark humor mixed with tears. Call it macabre, but we've been joking about the silliness of the situation. We've mentioned before that, during her illness, we had to do a few gut checks on what Mom would really want. After the intensity of the last few days, and noting the degree of subjectivity involved in separating someone's wants from ones own interpretation of those wants, we've taken to ending every minor fork in the road with a "Mom would have wanted _____." Mom would have wanted me to have goat cheese instead of feta. Mom would have wanted us to pick paper over plastic. As Erin said, "Mom would have wanted me to wash my clothes on delicate" or like Diane said, "Mom would have wanted me to eat bell peppers."

Humor helps, and honestly, mom would have wanted us to laugh ;). Still, I can't help but feel guilty when I do, like I'm disrespecting our loss, and putting a happy face on the real grief I'm feeling. I'm sad. I'm in shock. I don't know what's going on or what will happen in the next few days/weeks/months. I don't have an easy answer for "how are you?" The best I can muster is a shrug and a "well...." And I surely don't know why our family has been hit so hard with cancer. If laughing can get me through another moment -- another day -- than bring on the jokes, even if they are a tad off-color. At least it's a change from the sorrow ... --J

Go Back To Oklahoma

A few weeks ago, a lady in a trendy Subaru honked her horn and belted "go back to Oklahoma" as I turned into a 7-11. Apparently, my pausing for an oncoming car had irritated her. In hindsight, I suppose I should have taken a card from her "me first" play book and rammed my way into the parking lot, but pause I did, and, hence, the ill-timed screeching. I say ill-timed because her very loud and somewhat unhelpful recommendation had interrupted an intense discussion Erin and I were having on whether or not we'd ever have another conversation with our mother. Being told to go back to Oklahoma seemed not only childish, but a tad insensitive given our circumstances. If ever there was a time to chase a lady down, that would have been it. Instead, we laughed at her expense and mocked her drive-by cruelty, mumbling to ourselves, "lady, if you only knew."

Crabby ladies aside, it's hard not to feel a little resentful of those who can simply plow on with life with little regard for others. As our experience has shown, those types of people are in the minority, but when you run across them, it's hard to resist the urge to do a Mary and "kick 'em in the shins." Seeing people carry-on with normal activities also carries with it a tinge of envy; we can't be faulted for feeling lonely in the midst of all this. We've been wondering out loud how we'll move on with life, and what that life will look like when all this is over. In the end, it's a rhetorical question, and, as they say, if anyone can get through this, it's the Lawler clan. ;) (Cue nervous laughter....just kidding.) Ohhh, we know things will be alright. What's the alternative, really? Those who know us know intuitively that we'll get through this, and, most likely, with laughter. But being positive all the time really isn't that interesting, is it? So, to spice things up, why not throw in a little bitterness, and a dash of resentful -- all in good fun. Take last night, for instance. We were strolling down 16 Street Mall with Emily when she noted something we've also been feeling: seeing happy people makes us sad. It's fun to write, and a little revealing, but also somewhat true. I'd like nothing more than to play a spontaneous game of red rover with wandering couples or to say "I'm so happy for you" in a little louder voice than normal or to pass Green Peace without so much as the conventional white lie "I'm already registered." Of course, I'm kidding...(again, nervous laughter). Who am I kidding. It would've been fun to smack the latte out of cranky lady's hands. It makes me laugh because it's so out of character. I say, life hasn't been in character, so why stop now?

"Go back to Oklahoma." Very Grapes of Wrath of her. Where's Rosasharn to save the day? "Lady, we'll beat it outta Denver when we're good and ready! In the meantime, enjoy the jalopy with the mattress on top!" -- J

We Still Don't Need Food Service...GAH!

And so it begins. Like clockwork, food service stopped by to deliver Craig’s breakfast, and then again, to pick up his non-existent empty breakfast tray, forgetting all along that he declined breakfast in the first place. Communication: the biggest human factors error. Craig’s been on continuous TPN since March, and hasn’t had a meal – let alone a hospital meal -- since then. Yet still, the ever diligent food service folks continue to pop by with their trays o’ food. We’d be helping ourselves if the food was halfway decent, but seeing as though we haven’t had the best run of luck, we’re trying to avoid high-risk behavior, like eating off Craig’s tray.

It’s just about noon here. T-minus thirty until we hear “boom, boom, boom…food service.” – J

New Photos

Check out new photos posted in Mom and Craig's gallery.  More to come...

Channel 9 Interview

Check out http://www.9online.com/ click on "video"  or http://www.9online.com/Global/category.asp?C=116601&nav=menu681_4 and scroll to "Family battles illnesses together" for footage of News9's coverage of our journey with cancer. Thanks to Stephanie and Lonna -- and everyone else involved -- for making this happen.  I know somewhere, some place, Mom's smiling, doing her cocky slow walk, and hamming it up old style. ;) Thanks so much...it means more than you know. -- The Lawler Family

You've got to be f&*^ing kidding me

Pardon the profanity but you'll know why a few curse words are deserved given the following:

Craig will be admitted to the 11th floor either tonight or tomorrow. We will walk the halls of the oncology ward once again, only two short days after Mom's passing. The timing couldn't be more "shitastic". At least give us SOME time to grieve. We managed to crack up at how uncanny and surreal this is in between the cascading tears. Hilarious laughter accompanies feelings of being distraught and shocked; you just can't write this stuff.

We talked with his doctor today; Craig's condition seems as bad as he looks. In the passing days/week, Craig has grown more jaundice and evidently some of his smaller tumors may have grown (hard to know without ingesting barium). Regardless of tumor growth, his clinical symptoms are not improving, and, if anything, are getting worse. He's quite tired, vomiting still, and his liver enzymes are abnormal. The latest to this cocktail of crap--he's anemic and likely bleeding from the tumors. Last week, his blood level registered at 11 and now it's dropped to 8. They believe that he's bleeding near/within his lungs, or near/within his gall bladder area. Something is amiss and the doctor seems quite concerned. If Craig doesn't turn the corner this weekend, then we may have a conversation lurking in the near future about postponing his treatment until we can have a better understanding as to why his liver is mucked up, etc. If he doesn't improve this weekend, then we might need to change memorial service plans for our Mom. The horror to this tragedy is that we haven't had much time to even process the loss of Mom before redirecting full attention to Craig's care and ensuring his health, as we promised our Mom we would. These are unspeakable, unbelievable, horrifying circumstances. BUT, we're taking it one day at a time and trying to "deal" as best we can.

A message to whoever is in charge, knock it off with the voodoo doll already. Joke ended looooong ago.

~E

Thank You

Words can't properly convey how thankful we are to all who have walked beside Mom these last eleven months. She never walked alone; she never felt like a burden; she knew she was loved. Your posts, phone calls, sit-alongs, and commitment to Mom gave her that comfort. You've comforted us as well, during extremely difficult times and, for that, we are grateful.

To those who have followed our stories and shared their own, thank you for letting Mom know just how much and how many people cared about her. She followed your comments, and often choked up when we'd relay a post. It's not often one has the opportunity to see and feel the love around them. Mom left being embraced by not only her family, but all those she's touched throughout the years.

To our friends on the 11^th floor - the nursing staff, oncology and neuro-oncology teams, Dr. Damek, Dr. Borges, Dr. Kono, the palliative care duo, Dr. Knowels and Dr. Rosenberg, and, of course, Darcey - thank you, from the bottom of our hearts. Thank you for helping Mom die with dignity, for treating her as a person, and for staying true to her wishes. And thank you for being there for us. You prepared us; you gave us space when we needed it; you comforted us when it was required; and showed patience as we asked the same questions many times in many different ways. Thank you. Our only regret is that you didn't have the opportunity to know her before. Her life is/was more than cancer.

Friends and family, we'll continue to need your love and support as we care for Craig. Craig needs you, the family needs you, and we'll all need each other as we journey forward. Thanks for reading.

-- The Lawler Family

The most beautiful day of my life

Tuesday night was the most beautiful, as well as the saddest, day of my life. After deciding to take Mom off oxygen, Jill, Erin and I decided to have one last slumber party. Mom wasn't awake anymore, but she was still there and could hear us, or so we were told. So, we stayed beside her, playing her favorite music, singing through tears, reminiscing, and holding her hand. Had I imagined a scene like this before, I would have run for the nearest exit. Talk about intense. We stood by Mom's side throughout her dying process; Erin was stroking her head, Jill was at her left shoulder, Dad was holding her left hand. I was holding her right hand and watching her face when she took her last breath and wanted to run after her, tell her not to leave me yet, just one more anything. But, underneath the panic, I knew that this was right and it was a beautiful gift for all of us....and her. To be able to love in action, not just words. She died without pain, with her babies and her husband holding her and telling her it was gonna be okay. As hard as it is, we, I, couldn't have asked for more.

Thank you all for your support and for letting us share this experience in an authentic way.

D

"Food service"

Life has a way of injecting a bit of humor during times of profound sadness and sorrow to lessen the load. Yesterday was no exception. The six of us--Craig, Emily, Dad, Diane, Jill and I, had pulled chairs up around mom, who was lying on her new air mattress atop her patient bed. She was sleeping relatively peacefully, save that of labored breathing. All of a sudden, we heard a knock and the door opened to reveal a familiar uniform--hairnet, maroon apron, you get the picture. "Food service", they said. Now, if this was the first time they tried to give us a full tray of food or a smoothie for mom to eat, perhaps we would have been more patient, but it wasn't. Somehow, somewhere food service didn't get the memo and that knock happened to be the 5th or 6th "food service" we had to deal with. We told them we don't need food anymore, yet, like the movie Groundhog Day..."food service". I finally got to the point where I wagged my arm as if to say, "get the hell out of here". Jill and Diane would (politely yet firmly, as mom would do) "inform" them that we STILL don't need food. Eventually, we dumbed it down to a quick "no". Maybe if we pantomimed it they would get the point. Or, use pictographs: mom+food+stop sign+Mr. T = STOP BRINGING OUR MOM FOOD, FOOL!

Minutes after this event, we heard another knock at the door and before we could even say "come in", one of the cockier neurosurgeon residents entered the room complete with OR scrubs and hat. He quickly said, "oops, wrong room" once he realized who we were. We all started cracking up. You have GOT to be kidding me (insert a few curse words). You can't write this stuff. As Jill said, "maybe he's looking for Mr. Lewis in room 32".

You see, Diane perhaps ticked off this resident when she mocked him. We had been discussing the shunt issue for days, and had been waiting the arrival of the great Dr. Lillyhigh for at least four days when Mr. neurosurgeon -- we only hold baker's hours (i.e. 5:50 a.m.... we're still waiting for the Krispy Kremes) -- popped in for our morning round of "let's do a shunt" (despite our reluctance). Note to self: don't pop in on people before six a.m. unless you're bringin' doughnuts.  We had told the team that we weren't going to make a decision until we had a chance to discuss the shunt with mom's neurosurgeon, and of course, Dr. L.  So, when the neurosurgeon suggested that we go ahead with the surgery, and that Dr. L would be by, Diane quipped back, "is there really a Dr. Lillyhigh?" Evidently, the humor was lost on him and he explained that Lillyhigh was an extremely busy person. (Good for him and his datebook, I say). He then said that maybe he came by when we weren't here and Diane said, "what with his super hero powers", knowing full well that mom was rarely (if ever) left alone. Each morning since that day, the neurosurgery residents would wander into the room in the wee hours of the morning and inquire about the shunt, even though we (the oncology team, neurology, and Dr. Lillyhigh--he finally visited and was quite kind and informative) decided to hold off on the shunt for some time. Tuesday, as Mom's condition worsened and things looked imminent, I told the oncology team to send a memo to neurosurgery to stop coming by, that "we are kinda over the shunt issue". That made the resident's "wrong room" blunder a bit more hilarious.

Shortly after the neurosurgeon incident, and a few minutes after Emily and Craig left for the afternoon, guess who paid us a visit? "Food service..."

Mom would have cracked up.

~E

The morning after

It's 6:30 in the morning. Erin and D are sleeping quietly on Craig's pull-out couch as I type. I just gave C his morning meds; our energy is now focused on helping C through his process, just like we promised Mom and just as she wanted. He seems slightly better than he was a few days ago, and has had fewer anxiety attacks/vomiting episodes. Strange Craig-esque body gestures are still common, however; he was pointing his arm towards the ceiling when I entered his room this morning – a common Craig move these days. We’ll learn tomorrow the results of his latest CT scan.

It's hard to know where we are in all of this, but for Craig, it’s especially difficult. I can't imagine what he must be feeling. We called C yesterday morning to touch base with him on Mom’s process. He had left the evening before to get some rest. We told C that Mom was nearing the end of her process, but that she would want him to take care of himself, and that we’d be there for him should he wish to stay at home. Still, he mustered the energy to travel the thirty minutes from his apartment to the hospital, just to be with her one more time. Mom held on while he was there, and shortly after he left, she began her process. It was as if she was waiting, as if she knew that it would be best for Craigy for him not to see. Throughout her stay in Denver, she constantly asked of his health, and insisted that he put his own before hers. I know he had wanted to be there in her final moments, but he was there with her in the morning, and in all the months and years before. The five of us were all able to spend quality time with her, and were able to say all that needed saying. We were singing, laughing, and sharing stories up until her final moments. That’s what counts, and is exactly what Mom would have wanted. She left with us by her side, and in the most peaceful way -- just as she had wished. Dad, E, D and I held her hand until the end, and told her we loved her. I can say definitively that she left on her own terms, and without regrets.

Though cancer took her body and her ability to speak, she was very much herself, even until her final moments. Her journey with cancer was long and difficult, but you wouldn’t know it from her. Through all the skin tears, the incontinence, the immobility, she embraced her diagnosis with the same no nonsense attitude that’s grown to define her. She laughed when tears seemed more appropriate. I remember a time back in November when she fell back on me, pinning me to her bedroom mattress. We laid there laughing – mom with her body on mine (we took a picture of this). She danced with a hip shake when her feet wouldn’t move. And she said “thank you” with every compliment. Erin and D have a funny story of her telling the CT scan people “thank you for bringing me down for a scan.” It took all her energy to muster the words, but she was able to say them just as the CT folk were leaving her room. She had the nurses and doctors looking out for her notorious one liners and sassy comebacks (e.g. feeling with my fingers). I remember her responding to one of the doctor's question about searching for her legs under all the sheets with “ohhh, believe me, they’re in there.” She was their favorite, and they only saw a fraction of her true personality.

We'll be taking Mom home to Stillwater soon (we're still in Denver), and are planning a service for sometime late next week. Craig and Emily will also join. It's hard. I can't describe it in any other way. No matter how long I've prepared myself, it still doesn't seem real; I can hear her voice so profoundly. Just at dinner last night, I had the sense she was talking to me, telling me in her calm voice that “it’s going to be okay, sweetheart.” I know she's still with us.

Speaking for myself, I’m hanging in there, and feel as though I’m doing well (whatever that means), given the circumstances. The sense of permanence is overwhelming. I'm sad for all of us. We’ll all be reliving moments, remembering the past, and grieving a life without our beautiful Mom. Thankfully, we're talking and sharing our feelings, as they come and without pressure. Last week, E, D, and I took Dad out for Father's Day dinner, and talked, then, about how we were going to get through this. We didn't know the 'getting through' would be so soon, but we're talking and mourning her together. Dad said yesterday that he just lost his life partner of 36 years, the woman he’s built his entire life around. Like us, he’ll see her everywhere, and in everything we do. Some memories will be sad, others will make him smile. He assured us, he’ll be okay and will move on with life, as will I. Being with her throughout this process and sharing in the memories will help ease the grief. There’s peace in knowing that she didn’t suffer and didn’t experience pain. Still, losing mom has left a bruise that will take some time to heal. Until then, we’ve tucked wads of Kleenex into our pockets and sweaters to catch our tears – just like Mom used to do. -- J

To Dad

I love you.  We'll get through this ..... -J  ...and E.....and D

Heyyyy, Mom (said in her sing-song voice)

Mom, it will be hard to match today in beauty or in grace. You showed us what it means to love unconditionally; to laugh unabashedly; and to leave on your own terms. We needed you then, you needed us today. And like you, we never left your side. I will always love you, and will miss you, profoundly. I can hear your voice so clearly, and can feel you with us as we come to terms with our new configuration. You’re with us now; you’ll always be. As we reminisced earlier today, you always walked slightly ahead of us, to lead the way, and more importantly, show off your speedy little legs. I’ll continue to follow your lead, as I move on with life. I miss you, Mom. I love you with all my heart, and then some …. --J

To Mom

Mom  

July 24, 1942-June 25, 2008

Mom, you will live on inside me, inside all of us. I'll look for you, always...in Jill, Diane and Craig's laughter, in dad's random mannerisms, in the faces of my children...I'll look for you.

Everytime I'd leave Mom after one of my visits, I'd immediately text her "I love you Mom and miss you already".

Well, I love you Mom and I miss you already....

Love,

Erin, your very special "ratface"

Bye, Mama

Dear Mom,

I love you so much, down to the bones.  Thanks for having me and giving me the three best friends I'll ever have.  I am lucky to be your daughter and will miss you always. 

Love,

Diane Ruth

Bird-flappie hug mama

Where we are....

Last night was the hardest night of my life.  We (Craig, Dad, Jill, Erin and I) decided to stop giving her oxygen.  It's time. She wasn't awake yesterday except for one or two moments when she opened her eyes.  Oxygen wasn't stopped immediately, but has been gradually decreased over the past night to a minimal amount to let her natural process take place.  Her comfort is our priority and so far, she seems comfortable and pain-free.  Watching this happen is more than difficult; it's heartbreaking, gut-wrenching and draining. But, I can't leave her. I won't leave her until she is gone.  She deserves that. I think Jill and Erin feel the same.  So, until that moment comes when I know she's not there, I'll be within earshot or holding her hand; telling her how much I love her.

D

Lady, scram!

Earlier this morning, a lady popped in along with another nurse and began asking us questions about Mom’s skin care. She wanted to conduct an interview on instances of hospital-based skin breakdown. We thought she was simply going to ask us questions, but then came the “do you think your Mom would mind if I turned her on her side to check her back?” Uh, come again?? Did someone miss the memo? Erin said “uhhh, she’s in her dying process, and now’s not a good time.” Mom’s having a difficult time breathing; I’d imagine she wouldn’t appreciate being steamrolled on her side, just in the name of science. Incredibly, the lady objected (a tad), but thankfully, another nurse stepped in to say that wouldn’t be a good idea, what given the fact that we’re trying to have a peaceful moment with mom. Mom would have cracked up over the silliness of the situation. You just can’t write this stuff… -- J

Show of Support

We just sang Mandy, one of Mom's favorite songs. She used to cry to this song, and though we'd asked her why, we never quite found out the reason. It may have reminded her of her mom. Like Mom, someday our kids will ask us why we're crying to Mandy. The answer will be simple: this was Mom's song.

Since Mom's diagnosis, we've celebrated five birthdays, two holidays, and several milestones - each one with their own significance. Back in January, we celebrated her 6 month anniversary by asking our friends and family to do something special for themselves, and then dedicate it to Mom. That Saturday stood out as a day to CELEBRATE her, and how exceptionally well she was doing; to celebrate her incomparable tenacity, courage, grit, sass, and determination; to celebrate being a survivor! People from all over celebrated along with us, with each taking time to honor Mom. Maria and Dany in Austria sent Mom a You Tube video where they wore Eskimo Joes shirts Mom had bought them just a few years before when they visited us in Oklahoma. Lindsay and Travis took a moment while out in a remote part of Antarctica. Jane took a stroll around a lake and ended the night with a bubble bath, while Nu had a piece of carrot cake - mom's favorite. Our family also joined the call. Alison went shopping, while Chris and Aunt Joan drank wine.

I took myself out for a nice dinner and live music. There's a blues joint in Bangkok that's known for authentic Delta Blues. Having achieved under Craig's patient tutelage a hazy appreciation for the blues, I thought this would be a nice way to celebrate mom, as well as Craig, who was also nearing an important milestone - his second year as a cancer survivor. The first act showcased a trumpet player, who reminded me of Craig (he used to play the trumpet). Then jolly-the-green-giant jumped on stage. I'd describe his sound as a cross between Tom Waits and Jimmi Hendrix. Anyhow, it just so happened that they started with "Messing with the Kid," one of Craig's favorites. I remember seeing Craig play that song live at one of the Denver jam joints.

We relayed all the messages to Mom, and like clockwork, she'd tear up with each story of how people spent their moment in her honor. She felt overwhelmed by all the support. This is another call for support, to commemorate Mom whose entire life has been peppered with important milestones. This is a call to share your stories about Mom, and to join us in celebrating her life while she's here. Do something small that you love to do, and dedicate that moment to Mom. She was a softy for carrot cake, Sonic blasts, and Three Musketeers. We'll share the stories with her, in between songs, of course. She'd think it a hoot. ;)

We just sang Neil Diamond's "Oh Mary" to Mom - another favorite. The three of us stood by her side with a hand on her leg/arm, while dad sat nearby silently crying. This was the first time he had heard the song, and started crying when he heard the chorus that began with "oh Mary." We always imagined dad singing this to Mom. It just seemed fitting; now he did. -J

Hard times have fallen

Mom took a turn for the worse, unfortunately. Whether it's a pulmonary embolism, pneumonia, raging infection of some sort, or a combination of all three, her body is shutting down at last. After nearly a year of fighting a hard battle, riding a bull that few can ride longer than ever expected, she's slowly and peacefully drifting away from this condition. Soon, she will no longer have to be rolled to be wiped, to be fed pureed food, to be poked and prodded for vitals, to have her body be unresponsive to her mind. This weekend she had the energy and clarity to laugh, sing, and talk with us one last time. Soon she'll have peace.

We've weaned her oxygen, allowing her body to decide when it's her time. They are giving her morphine to limit any distress or discomfort she might have. Craig visited yesterday afternoon in between appointments; Dad stayed until the wee hours of the night. Diane, Jill and I never left her side. We had a slumber party and played her favorite Beach Boys album and a compilation of her favorite songs I made for her. We sang nearly every tune. I say nearly because, let's face it, some Beach Boys songs are just plum annoying. ;0) Though we don't know the lyrics of said annoying songs, we hummed along and bopped our heads as Mom would do, keeping a hand on her all the while.

She opens her eyes on occasion and we pop up to get within her visual field, and say I love you as much as possible until she drifts back to sleep once again. When she's asleep, we're filling her ears with stories of the past, and hope for the future.  She's comfortable, and loved. I wanted everyone to know that and hope that brings some comfort.

...and so goes the music once again. Her favorite compilation of her favorite songs sung by her favorite daughters...Dad started dancing the way he does...This is the way she'd want to leave us.  We're happy amidst the sadness.

~E

New Photos

We've posted new photos of mom and the family in the "photos>mary" section.

Put out the fire in your head

(written on Saturday June 21)

As mothers do, mom would often 'give a kiss to make it all better' as we bumped and bruised our ways through childhood. For whatever reason--perhaps the emotional comfort of a mother's affection--the pain would subside and we'd carry on with the random, hell-raising activity that led to pain in the first place. Most often, it wasn't the pain that was so startling but the surprise of one's own vulnerability-- life's little reminders of one's mortality. Through a kiss she'd say, "put out the fire in your head, sweetheart. It will be OK".

Now, every morning, every night and the moments in between, I kiss Mom on the forehead hoping that somehow the returned favor--a daughter's affection--would somehow "make it all better", at least for a moment. To help "put out the fire in her head". There is so much said in the human touch, a conversation where no words are needed. Between Mom and her children, the touch reads like an epic. So much is spoken, so much is communicated, so much is expressed that mere words can't properly convey--nor should they. It's in a touch, a held hand, a massaged leg, a hug, or a kiss that says "I am always here beside you, you are not alone". It is love without description, devotion without request.

Lately, she'll form a kiss on her lips and send an "air kiss" back. With eyes as brown and full as ever before and over a tired voice, she echoes my "I love yous" with a whispered, "I love you...too".

We're not alone in this form of affection. Mom's attending oncologist just so happened to 'attend' to Craig when he was admitted more than a month ago, and the surreal nature was neither lost on us nor her. Her spunky, sarcastic yet sincere demeanor automatically put her into 'advanced placement' in the Lawler camp. She became our new best friend when she, too, shared the power of human touch and gave a kiss on mom's forehead. Though mom may not actively participate, she always listens intently as the care team discusses plans with mom and the family. Ever in tune, the doctor notices when mom is upset or when we've covered sensitive information, and will reach out to hold her hand. Ever so gently, she'll purposefully lean over to give a kiss on Mom's forehead before whispering words of comfort.

This level of interaction and compassion has seemingly fallen into extinction between physician and patient (perhaps for good reason...ought not to breach sexual harassment/misconduct codes). Yet, each exchange between this doctor and mom showed that "she got it"--she got mom and she got what we were going through as a family. Maybe it's the improbable circumstances that we face that makes the interaction more "real"; she's helped two family members, both young, both battling stage IV cancer. One is nearing the end of that process, the other still wading through. She knows we have no misperceptions of what a lumbar drain might do, what the chemo might accomplish, or, for Craig, what "tumor fever" really means. We shoot straight from the hip much like her and perhaps that's why we relate. Or maybe it's that she takes the time to see Mom and Craig as they are, and as they'd want to be.

At least we know through our conversations with mom that she is not frightened, she's at peace, there are no fires left in her head...

~E

Snippits

Here are a couple posts from my blog that were written during Mom's illness. Please pardon the profanity.

Tuesday, January, 8

caterwhaulin'

Sometimes I feel like we're trapped in an episode of Hee-Haw. I'd say not a good one, but were any good? Anyway, I was getting out of the shower and thinking about what I was going to write today. Yesterday was okay, but kind of trying. She was moving slower than molasses up a hill. I got home from tutoring and literally had to wave my hands in front of her face to have her answer a question. Course, she was watching tv. Not law and order though. It was like I was shouting across a canyon. Helloooooooo. Anybody there, ere ere ere ere. Decided that we are NOT waiting to start the steroids, Roger Clemens, we are taking them NOW! Gave her a dose, which she did not seem too excited about.

Anyway, back to my original story. So, I'm drying off and thinking to myself "I'm gonna title my blog 'take your goddamn steroids, mama' " and grumbling to myself about her resistance to taking them when I hear "AAAAAAAA!" from her bathroom (she was also in the shower). Oh shit! Another fall?! I stop and hold my breath. Then comes the "mi-chi-GAN. Ohhhhhhh, I got to...." Singing the Michigan fight song in shower. I started cracking up. Went in and peeked on her and she was doing just what I thought, bouncing around nekkid. Take your goddamn steroids, mama. It makes a difference.

January 5

It ain't broke

Went to the e.r. today. Mom woke up and the side of her hand was hurting where she had caught herself during the fall. Better to be safe than sorry since chemo can make bones brittle and all.

Anyway, in the old days, p.c. (pre-cancer) any trip to the emergency room would have triggered some sort of panic or sense of urgency. But now.... we decided to have lunch, take showers, I cleaned my car. No hurry, her hand's not going anywhere. We've become so desensitized to medical stuff, I guess. Or we were just freaky drama queens before :).

So, we get there and are eating our snacks on the way, listening to System of the Down (What is THIS? It's not music! Yeah? Neither is Windy, you crazy lady). Her demeanor changes the minute she walks through the doors. Loud Mary has arrived in the e.r., folks. I can really see now how affected she is by people. She really likes the social contact and being noticed. Beginning with asking the intake person when the LSU game is, with a very dramatic eyebrow wag. Uh, mighten we sign in first? Show him the insurance card, perhaps? He doesn't know of course, and commences to GOOGLE it. Fucking surreal. Dude, a guy just walked in with a bloody nose. This is an emergency room, for chrissakes! Enough with the game! Anyway, this little scene ends with her telling him, and everyone else within a 100 mile hearing distance, that she hopes Les Miles gets his "butt whooped." Nice.

P.C., I would have been mortified. Actually, most of my childhood and adolescence was (were?) spent being embarrassed of the things she said or did. Can't she just ratchet it down a bit? Be a little softer, quieter......less. Now, I realize that while I still get the "oh god, mother"(s), that I am proud of her for not being any less, for saying exactly what she thinks, all the time, not mincing words, and living life on her own terms. And she lets me laugh at/with her and doesn't get offended, for the most part. That is what I love about Mom.

Other recent "momisms":

"those doctors got in there and fucked with my brain"

yes, they did.

"black birds are bitches."

"get out of the room so you can save your ovaries"
this was said in the e.r. when they were wheeling in the x-ray machine. point taken, but still an oh-god-mother moment.

Moments

A few days ago, Dad, D, E, and I met with the palliative care team in mom's room. At some point, E pointed towards mom and made a twitching gesture. D and I looked over, and without saying anything – not even a glance in each other's direction – we bolted from the couch and crossed the few steps to mom's bedside. Pretty impressive the response time. I think we startled the palliative care folks, but…what can you do. Our mama raised us well.

-----

E and I picked C up from his apartment the other day to take him to the hospital. Once we arrived, I hopped out of the car and grabbed C’s cooler from the back. Immediately, I could feel my hair standing on end, and I mumbled to Erin, “great, am I going to get struck by lightning? Should I be crouching down in a field somewhere?” Would figure.  Erin replied, “do whatever, just don’t do it near me.” Now I know where her allegiance lies. With my luck, one lightning bolt wouldn’t do the trick. I’d likely get to my feet and start with a wobbly slow run, when wham, the second would strike.

Quotes:

(Back in May)

Diane: “If you love your Diet Coke so much, why don’t you name it?

Mom: “I will.” The name mom gave her pop: Bob

(June 19)

Me: “Maybe after we’re finished with lunch, I can read you another chapter.”

Mom: “God forbid.”

Touché.

Rollercoaster

Mom just opened her eyes. Though she was back to her old self this weekend, she’s unfortunately taken a turn for the worse, and has been in a deep sleep since Sunday afternoon. She’s opened her eyes only a handful of times since noon. We’re not sure what’s going on – her blood, urine, and chest exams have come back negative -- but it’s clear her body has initiated a process from which she will most likely not recover. We’ve discussed her condition with her medical team, and have agreed that the best thing for mom is to allow this process to continue – no more CT scans, no more prodding, no more invasive measures. She’s worked hard for nearly 66 years; it’s time for her to rest. We’re not sure when it will happen, but we feel it’s soon. She’s no longer eating, and we’ve stopped her medication. Our focus now is to make sure she’s comfortable. The nurses and doctors have been more than supportive, and have offered us hugs along the way.

D, E, and I slept over last night for one more slumber party with our mom. Dad and C arrived at the hospital a few hours ago. We’ve been rotating alone time with mom, so that we each can have an opportunity to spend private time with her. Balancing this with Craig’s care has been difficult -- he’s actually downstairs getting a CT scan of his chest as mom rests. Though he had flirted with rescheduling his scan until tomorrow, his health is also important and this scan is particularly critical given his recent symptoms (the latest being bleeding from his Hickman site). Though I know he feels torn, it’s important that he not compromise his health, and I think mom would agree.

Though we’ve anticipated this moment, it’s difficult seeing the process happen. Saying goodbye is hard, especially when you don't know when the end will come. Loss as it happens and the anticipation of it are equally difficult. Still, we’ll be here until the end – as a family. -- J

Mr Lewis? Mr. Lewis, are you in there?!

Funny story for the morning.  We were just sitting here waiting for the doctors to round when a new female doctor barged in.  I say barge because there was no knock, no warning that anyone was about to come in. As mama would say, "were you raised in a barn?!" She introduced herself as the heart doctor. Uh-oh, I thought to myself, what now? Heart failure.  She proceeded to put her hands on mom's shoulders and shout "Mr. Lewis?!" Jill and Erin and I looked at each other and tried not to start cracking up.  No Mr. Lewis here, lady. Whew!

D

What You Are Picks Its Way

(Written June 21)

Through birth, life, death, burial, the means are provided, nothing is scanted,

Through angers, losses, ambition, ignorance, ennui, what you are picks its way.

- Walt Whitman

Before coming to Denver, D and I took a drive out in the country like old times. It was just near sunset as we traveled back into town, and as we did, two girls on horses crossed the street. It seemed the scene was ripped from a movie, with the reddish sun casting a silhouette on their horses and the long grass below. How far that day seems. Now, I'm watching mom's chest expand as she sleeps. She has her C-Pap on, which muffles her snoring. I never thought I'd be in the position to actually yearn for that sound, but tonight - of all nights - it would be a welcoming comfort. I'm writing from the couch after sitting by her bedside. She was woken earlier by a certified nursing assistant (CNA), who we've gotten to know over the past months. The CNA stopped in to give me a hug, and then proceeded to lead mom in prayer. After the prayer, mom said thank you and the CNA left us to sleep. I asked mom if she would mind if I held her hand just for a bit - I didn't want to leave her side, not after today. So I lingered at her bedside a little longer than normal, holding her hand and watching her tummy rise with each breath. While sitting there with my hand on hers, I couldn't help but remember that this is how she used to tuck me in. She'd buzz our backs until we'd drift off to sleep, and then, at some point unknown to us, she'd lift her hand ever so slightly so that we'd still feel her presence long after she had left. I let my hand linger on hers just as she did, and then at some point, I slowly lifted mine from hers, keeping my hand at a hover just in case she stirred.

With every shallow breath mom takes, I realize just how much I'm not ready for this -- no one ever is. The idea that there's a perfect fulcrum of emotion, a resting place of peace and acceptance when the time comes, is void of all things real, and oversimplifies human emotion. We've been through the whole gamut, feeling our way as we go. We're hopeful, and afraid; content and melancholy; at peace and, at the same time, not ready to let go. For all the bravado, there's an honest fear, a fear that there will soon come a day when mom is no longer with us. With that fear, there's also a peace and understanding that mom is, and will be, okay.

It's hard to come to terms with how this is impacting us individually and as a family. We've had our good days and our not so good days. And there are those brief and often private moments when the reality screeches out like Mariah Carey searching for a note. You can sometimes catch these 'a-ha' moments on people's faces or in their eyes, but they're often fleeting. For me, the only constant is this pressure on my chest. I've become the resident heavy breather, but flaring nostrils and heavy sighs are no match for this emotional strain. Given the circumstances, however, I'd say we're handling things as best we can.

That we've arrived at this point after nearly a year is terrifying and comforting. We've known from the outset her prognosis, and have lived each day with the knowledge that this one day - the day most young people fear - has been out there lurking. Before, we were picking out big occasions that mom would miss, like seeing us walk down the aisle, or being a grandmother. Now, the thing I want most is for mom to be happy, comfortable, and at peace; the moments we've had are more than enough to sustain us. She'll live on in the woman I am and will become. I'll see her in my sisters. Her voice will guide me in my dreams and memories; the feel of her lingering touch will provide me comfort when it becomes simply too much to bear. More importantly, she'll be at peace.

Strength in my mind is calmness, clarity, realism, and honesty. In our family, those components seem in harmony. To quote Erin, when climbing, you have no perspective or scale; it's only when you take a step back that you can see the breadth of it all. Talking seems to help give texture and dimension to what we're feeling. It's important we let the sadness surface, talk about it, let it linger and then let it pass on naturally. When our mom is teary-eyed, an "I know, mom" seems to help. With Craig, music and laughter seem to help tie things together. We recognize that our lives have and will change, and that we have a tough road before us. We're matter-of-fact when we need to be, and idealistic when it counts. It's a careful balance.

Conventionally, you grow conscious of happiness at the very point that it begins to elude you. We're lucky in that we can tell mom everyday how much we love her, and how proud we are that we are Mary Lawler's daughters. But knowing there's nothing we can do to stop this is painful. We find ourselves helpless amidst the laughter. We have to remind ourselves that there's something bigger going on - bigger than ourselves and the situation. Acceptance is sometimes a bittersweet pill to swallow. - J

Thoughts to share...

Several friends and family members have sent me touching emails with either reflections or insights on many of our posts....

From Mom's French sister (and our French Aunt), Chris:

...I try to remember Mary just as she was when I last saw her, she was pregnant with the two of you and beaming all the time. As for Craig, I can picture him sitting on the front steps to our house in Codalet, with a beautiful smile on his face...

 From one of our cousins on my dad's side, Carol:

...I don't believe we've actually ever met; I have a vague recollection of our grandmother, Deedaw, talking about you and Jill helping each other wash your hands while at her house (she marveled at your partnership), and I think over the years I have sort of adopted that as a "memory" of you two.  I met Diana years and years ago (she had to be one of the most beautiful toddlers I have ever seen), and Craig (he was wearing a red Superman cape and pulled open the door to Deedaw's basement popping off the security chain to which he exclaimed, "I must really BE Superman!").  I also remember your Dad, some years later when you were going back for an advanced degree, asking me if I had ever heard of Human Factors Engineering and seeming relieved when I said, "Yes, that's a great field!".

 From our former babysitter Amy--here are thoughts regarding a post Jill wrote about cancer metaphors:

...The voice from the past speaks again!

 I've been reading your blog posts--I admit that I open each entry with a bit of trepidation because clearly your days aren't easy (I have a talent for understatement!) but what you are writing strikes me as so important--not only for you and your family and those of us who wish you well but because it is so honest.

 Jill's post today about metaphors for "fighting" cancer touched on a topic that is close to my heart and I get a little soapboxy about it so I couldn't resist sharing a couple of thoughts with you... As the NYT article alludes to (or at least my bias makes me read in to it) the problem with all the fight metaphors or positive thinking encouragement is that the dark underside of both is that if you don't feel like fighting or being all that positive--even for just a day, a moment--that some how the fact that the patient doesn't get better is the fault of the patient in a horrible blame the victim mentality.  There is this secret implication in even the kindest of hearts that if you'd just taken my advice and eliminated wheat from your diet or tried the yoga tapes that my cousin's best friend's boyfriend said cured his third grade teacher, you wouldn't be going through this right now.  Or maybe I just have extreme passive/aggressive/paranoid tendencies to even think that :)

 I think the real struggle in finding metaphor for illness is that there simply isn't one. Metaphors are useful and wonderful for helping to put things into context or perspective, but frankly, there is no context or perspective for life and death.  They just are.  The most fundamental of the fundamental.  And the truth is we each have to find our own way-of course  with help and support along the way.

So I guess my hope for you is that you feel in your hearts what your writing acknowledges--given what you are facing, doing the best you can each day and in each new curve that comes round the bend isn't measured against some sort of objective gold standard.  It's about love and reality and fear and sadness and hope and joy and doing things the best way you know how...

Chucky's cousin

(Written last night, June 21)

I just finished massaging Craig's shoulder. He's been having panic-like attacks (as he says) since yesterday. It all began shortly after his ultrasound to review his liver and gall bladder; it seems his last blood work showed abnormal levels. (Craig's scheduled for another CT scan this Tuesday, though he's not due to have one for another three weeks. After examining Craig on Thursday, Dr. Flaig thought it best to get another look – this time with contrast – just to make sure his persistent pain/vomiting isn't caused by something else. He'll have another PIC placed before the procedure.) Though the ultrasound was without incident, about a half hour later, Craig became restless and twitchy. He began moving his arm like he was shaking off bugs, and massaging his feet as if he was trying to kick off his shoes. I brought him a cold washcloth and told him to close his eyes and take a few deep breaths. It didn't work, so I took him back to his apartment and gave him extra Ativan. D stayed over that night; C didn't sleep a wink. He woke her up at 5:45 for his morning meds, and when E and I arrived at noon to give him his second round, he was already jittery and asking for another round. Later that afternoon, while I was sitting in his family room, I heard a weird cackling noise reminiscent of young Chucky coming from Craig's room. I bolted off his couch, jogged the five steps to his room just to find him moving his left arm in a slow circular motion.

Concerned about his persistent jitters/anxiety, I paged both the Pathways folk and Craig's "on-call" doctor; they both said he could be having an interaction with his meds (though we haven't changed his meds, he could be experiencing a build-up effect) and suggested that we increase his Haldol. Though he may be having a reaction, his anxiety could also be related to stress and sheer exhaustion – this has been an intense week for us all, but more so for Craig. He hasn't been sleeping well -- the combination of the drugs, cancer, and sleep deprivation may be too much.

C stayed home today while we attended to mom at the hospital (shuttling back and forth from the hospital and his apartment in order to deliver his meds). We hoped that the rest would help his anxiety, but now it's 10 p.m., and he's still jittery. We've exhausted all possible med options, and breathing helps only so much; there's been so much focus on getting the meds right, we find ourselves with very few non-medicine tools (breathing techniques, etc.) to help C get passed acute anxiety attacks. I gave him a little more Haldol, as suggested, and then rubbed his left shoulder as he drifted off. Though his fan is on, he's sweating profusely. If this keeps up, we'll give the doctor another call, and possibly take him in.

All this is quite surreal, especially since while I was pushing Craig's meds, Diane was relaying the latest on mom's condition. It seems they've found blood in mom's lumbar tap. It could be an indication that her tumor is bleeding, or that there's a hemorrhage somewhere in her brain. They don't seem TOO concerned, but are taking her for another CT scan just in case. They've also paged the neurosurgeons for a consult. I hope they won't have to remove her Lumbar tap; she's been speaking more these past few days then she has in over a month. Though we enjoy conversing with her, more importantly, she feels more present, and less agitated now that she's able to communicate. She's back to her ol' feisty self a la Grandpa Tinse. In a way, it's like having the old mom back, if only briefly.

With all of this going on, our greatest fear is that someone will get lost in the shuffle. Mom is sick, but so too is Craig. We've managed a routine amongst the three girls: we rotate who stays with Craig, and who stays with mom, while never forgetting Sammie the cat, who also receives morning/evening IV meds (the Uni C nurses also ask about Sam). This means we're often separated, but better to be separated and ensure that C and mom are well taken care of than to let someone slip through the cracks. This is our reality. We rely on constant communication so that, just in the event something happens, the person away can book it to the hospital, or vice versa. It's not pretty, and we haven't slept in a while, but it works. We can handle the intensity – it reaffirms that we're still a family of six. And every time I think my backs against the wall, I look back to find a few more feet of space.

Craig's resting now. Erin moved our sleeping pads from Craig's room to the family room; I think I'll move them back for tonight, just to make sure he'll be okay. -- J

Turtlehead

Somehow, somewhere, my shoulders have crept up to my ears. Maybe it's from sleeping in one too many hospital recliners or cushions piled on cement floors. Or from lifting and transferring. Most likely though, it's from gritting my teeth and holding tight so that I can make it through one more day with Mama and Craigy with my head on straight.  At least I think it's on straight.

So, after a year of living in and out of hospitals, I now have turtlehead. A small price to pay for being able to be here, but annoying just the same. On the bright side, turtles are one of the cuter reptiles.........

:))

D

Getting here

 

We've grown accustomed to receiving drive-by hugs from the nurses here -- their hugs being a testament to the level of care they provide, as well as proof that we've been here a while.  Random hugs from nurses-come-friends are just what I need these days.  After talking around the main thing for over a week, we finally discussed mom's prognosis and end-of-life wishes.  Though it's been a long journey getting here, we -- including mom -- couldn't be rushed. 

As D and E have mentioned, the past week has been the proverbial rollercoaster, with as many twists and turns and direction changes as the creaky Kentucky Rumbler.  We've entertained a variety of opinions - some good, some not so good - and have gone head-to-head with some of the best here.  Though we appreciate frank talk - I prefer it over Pollyannaism - we're typically looking for something a little peppier than the Grim Reaper/throw in the towel speech, and a little less vague than the "there are known knowns, unknown knowns, and then unknown unknowns" drivel circa Don Rumsfeld. 

Last week, we were saddled with more of the Grim Reaper "your mom has a few weeks to live; better to take her to hospice now" variety, given to us by an insensitive oncology attending out in the hallway of the 11th floor oncology unit.  Location, location, location.  The attending expressed his opinion that mom was nearing the end of her process, and that we should terminate chemo and other drastic measures so as to avoid another Terry Schiavo.  Emotional intimidation, always classy. 

We've known since August the gravity of mom's illness.  The prospect of her death comes as no surprise.  What we bristle at is not the content, but the manner in which people so carelessly frame mom's wishes.  We have no interest in keeping mom around for our sake, but do have an interest in honoring her wishes to be kept alive if is she's cognitively here - a fair request, me thinks. The problem with opinions is they cost nothing to hold, and nothing to change, especially for those on the periphery of this experience.   D and I spent most of last week countering the local Flash Gordon's (not just one) with our own assessment of the situation:  that mom is very sick and likely nearing the end, but that she is still cognitively there, and has indicated her wish to be alive - sans tube feeding, resuscitation, etc. -- until she is.

Though we received a handful of "are you sure looks" and "dying with dignity" lectures - whose perspective on dignity really matters, the patients or the doctors? - we were finally able to make headway; this week has been categorically different from the last, both in pace, and in intensity.  With each encounter, people have gotten to know mom and see her for the person she is.  As they have, they've come to a different understanding of the situation, and have sidelined their own biases for mom's stated wishes.  I credit mom's nursing staff and two doctors in particular for that momentum swing.  Mom's new attending, who also treated Craig, has a knack for making uncomfortable things pleasant.  Her neuro-oncologist has also been extremely supportive of mom's wishes. 

With their support, we were able to discuss with mom her prognoses, and subsequent wants and wishes.  And on Friday, we were able to have perhaps the most meaningful conversation we've had with mom.  E and I sat with her early morning, and talked with her about her death - a pretty brave conversation for all of us.  I remember watching Erin stare at mom, her eyes a crystal blue from all the crying -- we were crying, and that was okay.    I told her that I love her; that she's bigger than life; and how proud I was to be her daughter. I told that we'll be okay, and that we'll make sure Craigy will be okay.  E and I told her that we'll look after Dad, and stand by him the rest of the way.  We were also honest.  We told her that we wished this wasn't happening to her, and that there was more that we could do.  We told her that she'll live on in all the hopes and dreams of the Upward Bound students she touched along the way; in all that we accomplish and aspire to be; in the women we become; and in the lives we will lead as sisters, daughters, friends, and hopefully, mothers. 

She said she wasn't in pain, and that she was proud of us.  And that there weren't any loose ends that needed tying.  She said she loved us, and that she'll be okay.  To write this is painful, yet beautiful.  There's beauty in the love we continue to have, in the moments we share, and the process we're all experiencing.  Mom is showing us with each day what it means to die with dignity.  She's showing us there's a grace to the process.  May her grace continue to live on long after ... -- J

 

 

 

Hotel Hospital's Quotable Moments

Dad, the profound: While talking with mom I asked her, “When you had us did you ever imagine just how wonderful we’d be”? Dad chimed in, “well you certainly are useful”. 

Jeepers Peepers: On Sunday, Jill, Diane and I were dancing for mom in tune to Stevie Nicks and Pat Benatar, complete with dancing with veils, shoulder shakes and intense stares. We left mom’s patient room to find the nurses smiling and laughing as they asked us if we were having fun. They could see our dramatic arm movements through the window. Can never beat Pat Benatar, we responded.

Craig “the joy kill” Lawler: In one of our important impromptu sing-along moments, we began harmonizing on “we built this city, we built this city on rock and roll” cue closed eyes and clenched fists. In the midst of such musical brilliance, Craig chimed in with “you’re in the wrong keeeey”. Nice, Craig. You’re right. We should have brought our tuner and found the “key of  80’s” prior to belting.

While Dad talked about various “administrative issues”, Mom finally smarted back with a familiar “stifle it, Jim”. We all immediately said, “ahhh” and I said, “she’s back folks”. We all laughed.



Good stuff.

~E

Say what you need to say

I'm sitting here next to a sleeping mom. I have one hand on her leg while the other types. Every now and then, I'll look over to find her staring at me. We'll look at each other for awhile, memorizing each other's faces, until one of us breaks with a yawn. The last time, it was me who (yes, purposefully) initiated the contagious cascading effect of a yawn. She succumbed with her own yawn within milliseconds. I love those moments...her yawns, her smiles, her peaceful gazes, her voice, her whispered I love you's...

These are the moments you cling to hoping to remember forever. It's impossible to believe that one day memory will be one way in which mom lives on, living on inside us rather than among us. The once shadowed inevitability, a silhouetted concept standing in the distance, seems to be gaining definition and form as days pass. We don't know when the end of the journey will come for Mom. They say "soon" or "weeks" but no one REALLY knows. It's how you spend the time that is most important, after all. When you sincerely appreciate that the journey will in fact end, those words that are difficult to say, you say anyway. Those things you're not sure you should do (or if she'd want you to do), you do anyway. These are the days of life and living. The ability to share with someone just how meaningful they are, to show them just how much they are loved is a gift many do not have. This is the time to take advantage, to live to the fullest, however long time permits. To make the most of what we have while we have it... 

I'm eternally grateful I headed west, once again, to be with her. I would have missed the hard yet beautiful and life-changing conversations about her dying process--what she means to us, what we mean to her. I would have missed this moment on this day, sitting next to mom as she peacefully sleeps.

How lucky am I

~E

The Change

Yesterday was an intense, painful day, which was preceded by a string of intense days.  About a week ago, Jill and I were informed by the oncology team that she had weeks, maybe days to live.  That wasn't news to us, or me (better to speak for myself) but hearing it stung, especially in the way it was said.  Her body has been, and still is, going through a lot.  Last Friday, I think, the palliative care team spoke to her directly about the prognosis.  Erin was in DC and Jill was getting Craig, so I was there by myself. This was the first time, to my knowledge, that Mom has been talked to in a real way about her death and where she is in that process. I thought that my heart was going to rip out of my chest when I had to ask the doctor to "please tell her, because I can't." It felt like giving up.  Like not being strong enough to reassure her that everything was going to be okay anymore. After they left, I put my head on her chest and told her that I love her with everything I have and we sobbed together. It still felt then that we were helping her through this; that maybe we had more awareness of what was going on than she did. 

Yesterday was different. I walked into the room in the morning and sensed a change.  Jill and Erin were red-eyed and sitting by Mom's bed, holding her hand, and I had the immediate uh-oh feeling.  Mom looked more alert than she ever has, thanks to the lumbar-tap, and said hello and good-morning in a stronger voice then she's had in weeks.  After Jill and Erin left, I started to feed her lunch.  She was looking at me with such an intensity that I started to cry.  For the first time in my life, she didn't start to cry too.  I knew then that she has accepted her death and is ready, relatively speaking.  Her eyes told me what I had know intellectually for the past several months and thought I had accepted.  I thought I was ready before, when she wasn't ready. But looking at her and seeing her change, that made it real.  And I'm not ready.  I asked her if she had any worries, was scared, and she said "no."  I asked her if she was at peace and she said "yes." I share this not to be maudlin or melodramatic, but to let all of you who know our Mom, love her, see where she is in her process.  It's not like the movies, at least so far as I can tell.  Accepting death doesn't mean you like it.  She still wants to fight, whether it's for two more days or two more weeks. So we'll support her.  I love you Mom.

D

Slow dance

I just read Jill's post. It brought back the time at Dixon's...ohhh, that memory.

We were crammed in the handicap stall--Mom, Jill and I. Mom had just finished going to the bathroom and I held her up as Jill pulled up her pants. I began humming along to a song that played quietly in the distance. Slowly, Mom and I swayed together--her head close to mine. I could feel her short hair on my face and her chin on my shoulder. She danced with me, listening to my humming and I closed my eyes hoping to always remember how it felt to hold her, to dance with her. I remember looking at Jill with tears in my eyes, and without words we told ourselves to hold onto that moment. 

It hurts like hell knowing that moments like those are memories, but there's some comfort in knowing that I can close my eyes and feel our gentle sway once again. ~E

Red Eye

It has been an unforgiving pace of life these last few days, one that has not left much time or energy for the written word or the eloquence in which to capture the raw beauty of love, life and the ending of life. 

Since leaving Denver for DC, I could not ignore the constant tug, the twisting feeling of time lost and the uneasiness of relying on mind and memory to feel Mom instead of the outstretched hand. Jill and Diane's voices formed my vision for a little more than a week and what I was seeing wasn't right. Late Friday, Jill called and just said "I'm putting you on speaker phone". Immediately I could hear Mom wailing and I knew then where I needed to be.

I took the red eye the next morning and made it to Denver by 10am. Jill and Diane picked me up and updated me on the latest since the previous night. Friday, the palliative care team told Mom in the most candid and gentle of terms that she was nearing the end of her life, that we are talking weeks now and not really months, that she should think of living each day beautifully. (Prognoses are somewhat relative; no one REALLY knows what we are looking at, but the best intepretation is that she is nearing the end of her life--whether that means weeks or months is not as important as how those weeks or months are spent).

I don't believe this was necessarily unexpected news given the disease and progression of illness, yet it's startling/sobering/saddening/terrifying/every other adjective, all the same. Jill had patched me through just after she had this conversation with palliative care, and Mom's children were there to embrace her as she digested the news.  (This is one point she has never needed to doubt or will ever wait upon--we have been and are always there for her). As we drove the familiar route to the hospital that Saturday morning, they filled me in on the details of this conversation and how she seemed to be processing.

We arrived at the hospital at noon, and proceeded to the 11th floor. You couldn't write the following scene even if you were writers for Grey's Anatomy. We crossed the first positive pressure doorway towards the bone marrow wing only to find Craig wheeling his IV stand as he traversed the hallway, clad in brown sticky socks and the same green checkered patient gown that Mom was wearing. He had just visited with Mom and was heading to his own patient room across the hallway as he awaited his hickman replacement procedure. Bizarre timing. I gave him a quick hug in the hall and then walked into Mom's room.

Mom immediately started crying when I arrived and I sat on her bed and draped over her as we do. Through tears and sniffles she greeted me, "Hello, raaatface". Ratface is a pet name she now gives me courtesy of my sisters' prodding. To hear her gear up and slowly annunciate the words warmed (warms) my heart. She usually follows with a giggle or smile, and that time was no exception. We cracked up and the world was right again, even if she was lying in a hospital bed and her arms had doubled in size since the week before when I saw her last. She had changed in one week, despite my internal protests that she couldn't be THAT bad. But alas, she had changed and it became a new paint stroke to define what we are looking at. I wasn't shocked; mom's inherent clinical nature taught her children well. Her skin tears were more substantial, the bleeding up and down her arms more pronounced. The ill-defined form of her fingers and hands were as apparent as the absence of her (recently cut) wedding ring that once circled her left ring finger. Her arms were as full and heavy as water balloons. Still, she was there. Her eyes showed me, the whispered I love you's told me. She was there, and she was overjoyed to see me and to know her family was complete again. The sense of comfort that brought was palpable. I, of course, made it known that the world was right again BECAUSE I had arrived. They could rest easy, Erin (third person a la Whitney Houston) was there. This made Mom laugh, and laughter is worth your weight in gold.

Immediately, we have fallen into step with our sing-alongs, laughter, random story-telling, and impromptu dancing and Mom tracks every movement, every expression, every word uttered like a hawk. As Jill mentioned, as we fed her one day, I began quietly singing, "in the morning I wake up, just before I put on my make-up...". Jill chimed in and we sang to her. She watched us intently and began to cry. You can tell without her articulating--through the clatter and commotion--the presence of her children brings her peace and joy.

Family is everything to us. It may be every Mother's dream to have a tightly knit family as committed to each other as they are to her. For Mom, it's her reality and it's our driving love for her that, during times like this as she's nearing the end of her life, we race to be with her, to share space and time with her. To sing and laugh, and give her bear hugs. To say 'I love you' in every moment. To let her know just how extraordinary a woman and a mother she is. I heard the palliative care nurse say to Mom, "they were lucky to have you then, you're lucky to have them now". We're lucky to have Mom, always.

Until the end, it is our job to let her know our love--always and forever . ~E

Priorities

It’s interesting how quickly things can change. How once unbending priorities can fall into obscurity, and little notes in the margin take center stage. We’ve all had to adapt to cancer and none more so than mom and Craig. In what many would consider their prime, they’ve had to adjust to a new normal, setting new priorities and giving up on old ones with little objection or resistance. It’s frankly impressive that they continue on as they do. It’s a credit to the people they were before cancer, and the people they continue to be today.

We’ve discovered, as a family, that being together makes a difference. I remember breaking down in the parking lot garage of Baptist Hospital when we first received word of mom’s GBM. I was overwhelmed with the realization that I’d spent the better part of the past decade outside the U.S., and have missed birthdays, holidays, and everything in between as a result. Getting the phone call in February that mom had fallen only reaffirmed the importance of being there. Though I continued working in Thailand, I wanted more than anything to be there with the family, to regroup as a team like we always had. I felt like an observer to the process; like I had no relevance to the situation; like I was missing the nuances of life with mom and the rest of the family. The distance allowed me to construct my own narrative – my own storyline. And of course, my imagination got the best of me.

The decision to shift priorities, pack the few things I had and make the trip east from Thailand was easy. Being together allows us to build life stories together – adding new chapters along the way. Our content: the quirky exchanges, long conversations, spontaneous sing-alongs, and, of course, laughter. Since being home, I’ve been able to be a part of the little things, like seeing Craig sing in an acapella group, or watching mom bob her head to the Law and Order song. Or personal moments like softly crying in Dixon’s bathroom as E and mom slow danced to some song she was humming.

I’ll remember the way mom’s hand felt as she buzzed my hand during our trip back from Mother’s Day dinner in Tulsa. I’ll remember the sound of her voice when she belted out “good morning, Jill” and then started laughing (this happened just before her seizure). I’ll remember laughing with dad as mom reclined on his chest, while eating string cheese (at a purposefully slow pace). I’ll also remember the tender moments, like mom in the morning saying she can’t do this, and dad rushing to her side to give her a reassuring hug. And mom asking about videos of Craig playing harmonica, and expressing regret that she never had the chance to see him play.

I’ll remember the touch of mom’s frail hands as I rubbed lotion on them, and discussing why someone would bother with the voice impersonations while listening to books on tape. I’ll remember the wacky moments like watching dad put his dessert in a bowl and then leaving the bowl in a cupboard. Or random conversations like dad telling us about one of his childhood friends who was an heir to a circus; his friend had a role as a circus clown in his family business. Dad seemed particularly happy when one time, his friend – the clown – waved to him from the circus ring. And I’ll remember mom singing her own version of Elizabeth Cotton's “Freight train,” with mom’s lyrics something like “I don’t care which train I’m on, just as long I keep rollin’ on.”

I’ll remember watching the Colbert Report with Craig, or watching him pull a hand towel over his legs over and over again, as if on the fourth try, it’d magically turn itself into a full length sheet. I’ll remember watching him pound his legs in beat to “my name is stegosaurus…I’m a funny looking dinosaur.” And talking about Burma while pushing his meds. Or laying on my belly in his room, and laughing with Craig at some lady attempting to sing on NPR (psst, you ain't no Streisand). Or hearing him tell Emily “I promise I’ll try to get better.”

Some have expressed concern that I’m “giving up on my life” by being here. Being here ensures that I’ll be able to continue after all is said and done. If I were to stay away, I’d be sacked by a lifetime of regret, and a book with no character. It all goes back to knowing your priorities. My priority is being here with and for my family, and giving Craig and mom the quality of life they deserve. Our love and memories will provide comfort later in life. I would have missed all of this had my priorities been different. -- J

Mama bear

Sometimes I feel like a mama bear protecting her cub when it comes to Mom's care. Since she's been in the hospital, it's felt like a daily struggle to remind everyone that she is a person who has cancer and not the other way around.  And not just any person, but someone who has accomplished a lot during her life. Not just for herself, but for our family and the community.  Everyday, we try to convey to the different teams how special she is, not was.  And that she can understand everything they say, not to mention HEAR it.

Which brings me to the mama bear thought. Two days ago the nuerology team came for their rounds with a new attending doc, who happens to be the head of the neurology department.  I was here by myself; Jill and Erin were administering meds either to Craig or the cat (can you believe even our cat gets iv meds??)  Anyway, they came in with four med students which made 7 or eight docs crowded around my moms bed. I could feel her start to get emotional, but decided to sit back and see how things went.  After short introductions, the head doctor began asking her questions and then interpreting what it meant to the team.  It was like Mom was being dissected; like she wasn't even there.  I tried to redirect their questions so that they would engage her, but the doc was too excited about using her as the "ultimate" teaching moment.  Understandable. It is a teaching hospital. But, there are better ways to do it than poking someone and gawking.  Mom started to cry and up I went.  Nobody makes my Mama cry.  Especially after they've been asked nicely to give her space and speak to her.  So, I asked if I could stand at her side and hold her hand while they continued the exam.  She seemed to relax a little when I grabbed her hand, but it still felt like we were under siege; rapid fire questions, chatter amongst the doctors, and this little woman in the bed trying to follow all of it. I began to get pissed.  She deserves better. Why make her feel anymore fear than is necessary?  I noticed myself leaning further and further over her, trying to shield her with my body, mama bear covering her cub.  Not to infantilize my mom or patronize her; she's still the matriarch and runs this show.  I guess the cubs can protect their mamas, too:))

Anyway, it was a pretty horrible experience, although I don't think the docs intended it to be.  The next day, after having dreams where I told certain people where to stick certain things, I made sure we expressed our wish that Mom be spoken to, not about, and that only three or four people come in at a time.  Also, that they ask her permission that students be a part of the team.  I know she doesn't mind, but it shows respect to give her the choice.  Basically, that they treat her sensitively, like a person and not a case.  I think we conveyed that message in a way that Mom would be, and is, proud of and agrees with.  People are actually getting on eye level with her and the volume and content of what is being said is more real and appropriate to who she is. Hopefully, this incident and our overall experience will influence how these doctors treat people in the future. 

D

You don't have to yell

“You don’t have to YELL.” – Mom, to the neurology team, June 15, 2008

Suffice it to say that mom and the neurology team won’t be getting married any time soon. Yesterday marked mom’s fourth unpleasant encounter with the loud talkers-come-neurologists. For some reason, they insist on talking to mom like she’s a child. Unimpressed, mom typically doesn’t respond, which only encourages the team to ask more inane questions like “Mary, can you say ma-ma” right in her ear. D embarrassed one doctor after a particularly “frustrating” encounter with mom (at least to them). The doctor was asking mom what she thought of the weather, and, of course, mom didn't respond. Hey pal, she hasn’t been outside in days, and happens to be turned away from the window, so pardon if she’s not so Johnny-on-the-spot with her assessment of Denver’s climate. Frustrated, the lead doctor mumbled to his apprentices “see, she can’t do anything.” Matching the doctor in frustration, Diane walked over to mom and asked her “mom, do you like tofu?” which mom replied “hell no!” What they haven't yet caught on to is that mom can, and will, talk if sufficiently motivated; asking redundant and often annoying questions is clearly not the way. Some of the neurology students were visibly touched by this exchange and even lingered to hold mom’s hand. Shortly after, they began speaking to her as an equal -- not as an invalid -- which you’d think would be standard given their profession.

Aw, but how quickly memories fade. Just the next day, some of the students returned only to yell louder. Tired by the emotional bullying, mom finally told the neurology team “you don’t have to yell.” She then began to cry. Unaware of the trauma that their questions induced, the neurology resident chalked her emotions up to steroid fatigue. True, she’s been crying a bit more these days, which could be the steroids – they have a habit of playing toss with one’s emotional state. However, she could also be expressing genuine feelings of frustration from being trapped in her body, and unable to speak.

Mom is there; her essence is there. You can see it in her eyes, and the way she furrows her brow. She watches us; laughs when we laugh, and cries when we cry. She’s there, and to be talked down to on a daily basis after having achieved so much in her rich life must be the second cruelest joke -- the first being the sense of invalidation brought on by someone assessing real emotions as steroid fatigue.

The next day, the group returned along with the chief of neurology. Erin and I had stepped out for breakfast, and entered her room just in time to find Diane crouched around mom, with perhaps seven neurology students huddling beside her. E and I immediately asked what had happened, and the neurology fellow explained that mom became “emotional” again during their exam. E and I watched as the chief doctor continued to poke and prod, all the while telling his eager onlookers “see, look at that, see that.” Diane finally asked them to speak TO mom and not ABOUT mom and to explain to her what they’re doing. The chief doctor said he couldn’t, and waved Diane off. The next day, Diane and I spoke directly with the two neurology students that had been following her care, and asked that the team reduce the number of students allowed in mom's room, and that they try to improve their communication with her.

Engaging with patients and family members in a respectful way is also a valid teaching moment. We’ll see whether these teaching moments will actually lead a change in behavior.  Somehow, I doubt it. -- J

The days between

When you cock only half an ear, it’s hard to tell if mom’s laughing or crying -- you have to give her face a glance to discern the two.  Today, she’s been laughing, and I think more AT us than WITH us.  Like always, we’ve been serenading her with our off-the-wall sing-alongs.  I asked her if she felt trapped; her response:  yes (but between smiles).  As much as she heckles, she's more alert when the three of us are around.  Call it the noise, but I think she enjoys seeing her girls goof around, and we enjoy seeing her eyes smile when we do.  But, we have our sad moments as well.  The day Erin arrived, E and I spontaneously started singing one of mom's favorite Dionne Warwick songs and she began to cry half-way through.  Mom continued to look at us with these intense eyes as we sang "In the morning I wake up, before I put on my makeup, I say a little prayer for you."  It was as if she was burning the image into her memory.

We’ve been enjoying these moments together, and taking each day as they come.  She's been in the hospital a week now, and will continue to be for at least a few more days.  I’ve been reading her favorite Patricia Cornwell to her, and though I’m the only one actually following it -- she usually falls asleep within five minutes of my reading -- I enjoy reading to her, and she seems to enjoy listening, even if my droning voice does put her to sleep.  (I’m a natural sedative, what can I say.) Just seeing her eyes light up when I ask if she wants to hear another chapter provides the impetus to continue (with the torture, as E and D would say).

And much to their annoyance, the “torture” will continue at least for a few more days. She’s scheduled to have a lumber tap tomorrow, which will help alleviate pressure in her ventricles.  It seems the so-called dam, which was constructed back in August to prevent her cerebral spinal fluid (CSF) from leaking into her brain, may have burst.   The CSF and tumor have been “communicating,” as the neurosurgeon likes to say.  What they’ve been saying to each other during their little chitty-chats is not yet known. Nor are we aware of whether the cancer cells have spread throughout her spine -- her last spinal MRI was negative. (The doctors have said that this is a slim – emphasis on slim – possibility, so we're not too worried.)

The lumbar tap may alleviate some pressure, and may help mom with motivation and activation.  Since her seizure, she’s been on a steady decline and is now unable to move without assistance, and can only eat pureed food.  Finding the words to express her thoughts and feelings is, of course, a challenge.  Reducing her CSF may improve her motivation/activation for speaking, eating, and perhaps moving – in other words, her quality of life.  After discussing this with her doctor, mom agreed to give it a try.  The procedure is minimally invasive, with few side effects, and will be performed at her bedside.  We should know within the next few days whether it’s had an effect.

Our goal is to support mom in her wishes to have a “quality life.”  It doesn’t matter the days between, only how she feels, and as long as she continues to express her desire to continue with treatment, we’ll support her in that decision.  And when the time comes she’s unable to communicate her wishes, we’ll do our best to do right by her and to honor the beautiful woman that she is.  Thankfully, the six of us are all in agreement on what exactly that means.  Our close family bond has not gone unnoticed; we realize how fortunate we are that we enjoy each other's company, and have a good sense of each other’s wishes.  It must be comforting for our mom to see the five of us continue to rely on each other for support during this difficult time.  In the end, we'll be okay because of that bond, and her mentorship. I hope knowing that is of some comfort to her. -- J