This is the first section I've written, but it's about the death so it really comes at the end of the book. I'm trying to work backwards so I don't forget so much, and so I can just get the most unpleasant chapters out of the way. What I plan to do is a chapter like this, that describes what happened to us, then a practical chapter that discusses other scenarios that happened to other people, and tips for coping with whatever stage of the GBM journey the previous chapter was about. Like, an "Our Story" chapter, and then one I'll call "Practicum," or something, alternating all the way through.

“Is that a fancy word for ‘mess?’”

                                         --Richard Jordan in The Equalizer.

            Adam passes me the Scrabble board, and glancing at Bob, says what I have been thinking for the past half hour. “I think his respiratory effort has increased.”

            I look and listen as Bob comes out of another apneic phase. His chest rises and falls faster, with a rasp on the exhale. “Yeah,” I say, “I’ve been noticing that, too.”

            During Sean’s and Eric’s turns we all listen as the end rasp gets a little louder, as the next few cycles ofcatch-up respiration get a little harder, a little faster.

            I get up. “I think I’d better call the nurse.”

            I fight through the obstacle course in the office, hopping like a frog and sidling like a crab. When Michelle doesn’t pick up her cell phone, I repeat the process coming and going to get At Home Care’s main number off the sign on the refrigerator door and scuttle back to the phone. Their phone operator takes all my information, spelling it all back to me yet again, and says Michelle will call me back.

           Michelle rings back a few minutes later. “I just tried to call you,” I say. Turns out I got one digit of her cellphone number wrong. I describe what we are seeing.

            “It sounds like he’s transitioning,”she says. “But I’ve been on call two nights in a row and I’m not on call tonight. I’m going to call the nurse who is on call—her name is Michelle, too—and fill her in. She’s going to want to come check on him, take his vital signs, and see if there’s anything else we need to be doing.”

            I have pretty much guessed what “transitioning” must mean, but I ask anyway. At a time like this, you don’t want any lingering doubts. “Um, okay. ‘Transitioning.’ That would mean exactly what?”

            Michelle fumbles a bit. “Well…what that means, is that he’s beginning the process of actively dying.”

            Well. Now I know. Two years of hoping, living, writing, fighting, and knowing it was going to happen anyway, and now it's here. He’s starting to die on us.

            “Are you all doing okay over there? Michelle will call you in a few minutes. She should be over in half an hour or so to check on him.”

            I find myself saddened, wishing this had happened on another night so our Michelle could come and see him instead.The idea of asking her pops up in my mind and I push it right on out again. Everyone needs sleep. I certainly wouldn’t want to be on call two nights in a row. Back in the early nineties when the only veterinary emergency clinic in the area was in downtown Richmond, I didn’t even like doing it for one.

            “Okay. Thanks.” I try to keep the tears out of my voice. You’ve see a million things die. Buck the fuck up.

            I reverse the obstacle course again and walk back to the living room. Before I can get there the phone rings again. It is the chaplain. She asks if we need anyone to come and sit with us, just to be there. I tell her thanks and say no.

            In the living room, I force the words out of my mouth. “What they’re saying is, it sounds like he’s starting to die. They’re sending a nurse out to check on him. She’s supposed to call us back and be here in about half an hour or so.”

            Adam looks up from the Scrabble board. “I figured they’d say that.”

            I settle back beside Bob and the Scrabble board goes around again. Adam beats the crap out of the rest of us as usual. We start another game over James Taylor’s melancholy voice and the intermittent sounds of mucus popping and rasping in my husband’s throat.

            Almost an hour later I’ve claimed my third triple word bonus and have my first ever Scrabble lead, tonight of all nights. Bob would be tickled if he knew, after all the many, many games I’ve finished dead last. I snuggle my legs closer to his under the quilt. He doesn’t move.

            Suddenly he hiccups four times, so loudly the last one sounds like a yell, and then goes back to gurgling and rasping again. I ask if the boys can help me sit him up a little more. The problem with cranking up a hospital bed is the pillows creep down as the head of the bed goes up, and a sleeping person sort of folds below the rib cage like an accordion and scoots down the bed.

            Adam holds Bob up as I crank the bed up and reposition the pillows. Although he’s alive, his neck and shoulders are already stiff. I try to turn his head to a position that looks more comfortable. I can’t do it. His T shirt is wet where he’s been drooling on it. I get a blue paper bib to place under his chin.

            We ease Bob back down. Not a moan do I hear, and he doesn’t grimace either. He seems completely unaware of what we’ve done. I am glad.

            Adam counts the time that elapses between breathing periods. “Still about twenty seconds.” This time Bob finishes hard, with a noisy exhale that whistles through his voice box and comes out sounding like a moan. I brush his hair back from his face and notice that it looks oily, sticking together as if I haven’t put dry shampoo on in a week. “Is he diaphoretic?” says Adam. I feel Bob’s forehead. I don’t think so.

            “Where is this nurse, anyway?” says Sean.

            “Don’t you think you’d better call her?” says Adam.

            I have been waiting, since it’s not uncommon for the GPS to lead caregivers astray on their first trip here. Any time now, I expect the nurse to call with an exasperated, “Where are you close to, again? I’m on Candlewood Road!”

            This time I get up to go for the phone. Almost at that exact instant, a knock sounds at the door.

            The new Michelle turns out to be tall and stylish, with sparkly gray beads and a short, fluffy blow-dry. “I’m so sorry I’m late,” she says. “There was an accident on Chippenham, and I was stuck in a traffic backup.”

            “I was confused. I thought you were going to call,” I say. We all introduce ourselves and shake hands.

            “I’m sorry we have to meet at a time like this,” she says.

            “Yeah, so are we,” I say. “Thank you so much for coming.”

            Michelle starts to examine Bob. We watch as she takes his pulse, listens to his chest, takes a respiratory rate.“Have you been giving him the atropine?” I explain that the old Michelle has us on an every three hour schedule. I’ve been using three drops at a time.“Although it’s hard to count the drops, because the light isn’t good over there, and you have to put the dropper in his mouth.”

            New Michelle frowns at the noise Bob is making. “You can use more than that, like half a dropper or so. Although, it sounds like a lot of the noise is deeper down in his chest. It might not help that much.”

            Bob stops breathing again. We all hold our breath, feeling the silence in the room.

            Softly Bob’s chest rises and falls,building up to a good hard rasp with that crackling gurgle.

            “He’s going apneic for about twenty seconds, then he starts breathing again,” says Sean.

            “The Cheyne-Stokes respiration is more about serum level Co2. Whereas true central apnea syndrome is usually related to nervous system issues or damage,” says Adam, ever the registered sleep technician.

            Michelle puts the pulse oximeter onBob’s finger and studies the readout. “His pulse ox is only seventy-two, and his heart rate is one-sixty. Even with cold hands, that isn’t good.” She sits on the couch. “When they’re working that hard and their pulse ox is still that low, that’s one thing that tells us it’s almost their time.”

            I sit next to her. “Well, he hasn’t urinated in over twenty-four hours, either. Michelle and Gina were in here and changed him for us about one pm yesterday and he’s been dry since.” I know that this is another signal.

            “Yeah, that’s another sign, too,”says Michelle. Bob is breathing harder and faster even as she sits there. His skin is paler, his fingertips are a little blue. I know now why they put so much makeup under the eyes when actors are dying in the movies; it really happens. To me, he looks much worse now than he did when I called.

            The hard questions have always been my job. I am thinking: We’d better call Eric out of work. Is it better if he’s here tonight or tomorrow? Will I get a chance to get some sleep so I can be awake for the death? I feel gross. Do I have to sit up all night like this, or do I have time to take a shower?

            I have to force the words out. “So, how long do you think we have?”

            It is eight pm. Michelle says, “We never know, exactly. Sometimes we can be wrong by a day or two. But looking at him right now, I’d say twelve to twenty-four hours.” Just watching the deterioration over the past three hours, I would say a lot sooner than that.

            Michelle explains that one of the objectives of the morphine and lorazepam is to help slow down the patient’s respirations. At this point, the body is working very hard to no avail. “Actually, when they reach this point, we start giving the meds every hour.”

            I am sure my shock shows on my face. Every hour? I already spent last night mostly awake, jarred by the sounds of Bob’s breathing and his hiccups. I was just thinking that if I could doze off for a couple of hours between medication administrations, I might just make it through. Now I’m going to have to stay up all night long? I want to be awake when Bob dies, but I am not sure I’m going to make it if I have to stay awake all night.

            I look over at my sleeping husband,his head twisted to his left, drooling on his bib. I feel dirty and greasy and oily, having had to delay my shower because of the phone tag with the funera lhome. I am still in the clothes I wore yesterday.

            I have to take these off. This is my favorite purple sweatshirt and matching plaid print leggings. I was wearing this outfit the first time we ever went to bed together over ten years ago.When I flew out to visit him at his house on the lake, I took this outfit because I knew it would be comfortable to work in. I still have a smudge of paint on the front from painting the interior doors in it. If this is the outfit I’m going to be wearing when he dies, I know I’ll never be able to look at it again.

            I have this irrational fear that if I leave the room, he will die right now. Hurriedly I explain about the phone tag and how I haven’t had a shower in over twenty-four hours. “Do I have time to take a shower?” I ask, thinking I must sound like an idiot.

            “Sure,” says Michelle. “I’m going to stay for a bit.”

            “I’m going to call Eric at work and let him know,” I say. “Then I’m going to take a shower and be right back.” I hang back, hardly able to leave the room. Everybody finally has to tell me to go and take my shower.

            I have to call a 1-800 number and leave a message with the security guard in a warehouse that, from the background echoes, must be enormous. She tells me Eric will call us back. Thankful to take off this one special outfit, I close the bathroom door and hurry through my shower.

            When I get back, Michelle leaves and the boys tell me Eric called and is on his way. “We decided we’re going to go out for some chicken,” Sean says. “We haven’t had any lunch and we’re starving. Do you want any?”

            I already have fried chicken in the refrigerator, along with the mashed potatoes and the macaroni and cheese I know now Bob will never eat. “No, thanks, I say. I just bought fried chicken—still have some in the refrigerator.

            I know that the next few minutes,while Sean and Adam are gone and before Eric gets here, will be the last moments I will have with my husband alone while he’s still alive. After the boys leave I get the kitchen chair and bring it back to the side of the bed. I slide my hand under Bob’s shoulders, hoping I’m not hurting him, for one last hug and kiss.

            Tears stream down my face. I start to talk to him. I tell him how much I love him, that I’ve always loved him more than anything. I thank him for sharing these last ten years with me. I tell him he could have picked anyone, and he could have. I promise not to let any editors eviscerate his book.

            I apologize for being upset these last few nights when he peed. I tell him I didn’t mean to hurt him turning him or changing him, and to forgive me if anything I said or did hurt. I apologize for being so depressed all the time, and being so overcome with all the bad things that happened while he was still healthy. I thank him for putting up with me while I was so difficult to deal with. I thank him for a million private things.

            I thank him for all the special times we’ve shared, for all the writer’s group meetings and the fun times out, for all the meals and snacks snuggled up on Sunday afternoons watching movies, for all our special talks, for all he’s taught me. I have a first draft of a novel now I’d never have if it wasn’t for him. I thank him for his happiness, for his humor, for his courage and his sunny attitude. I tell him I’m so glad he came to stay. For the past ten years, it was as if a wonderful breeze swept through this little, falling-down condo we lived in. I tell him that, and I tell him how much I will miss him. I tell him I’ll never forget him, and promise to send him secret messages of love and hugs through the Huggy Bear. I tell him wherever he goes, to listen out for them and not to forget me. I tell him I hope more than anything that we’ll see each other again. “Me and you,” I say for the last time. “I love you a million times.”

            This time he doesn’t kiss back. His mouth tastes like medicine. I lean over and hold him close, listen to his breathing change from a loose rattle to a rasp, and dry his forehead of my tears. I wonder if he can hear me. I hope he knows I’m here. I hope he knows we’re all here.

            Eric could knock any moment. I try to stop crying so my eyes won’t be all red.

                                                            ***           

             In the interest of protecting his ipad from chicken grease, Adam has turned off the Scrabble game. Sean picks out one of Bob’s favorite movies, The Last Boy Scout, and starts that playing. Eric has glided through like a pale ghost and sits in the office playing video games.

            Before I eat I run out to the car to get my stethoscope. I listen to Bob’s chest and take a heart rate. 180. Not good. The hourly meds seem to be helping his breathing, though. It’s not quite so heavy and the rasping and gurgling are quieter.

            Adam gets up and walks back into the office. I hear, “Eric! You know, we called you with the idea that we could all be together. You want to come out here and get some chicken or something?”

            “Okay.” Eric ambles out of the office and dishes up some chicken and fries. I do not know what old family arguments predated me on the scene that might be at work here, or maybe it’s just that Eric doesn’t like seeing his father this way. Who can blame him?

            The boys know every funny line in The Last Boy Scout, and jokes and laughter bubble throughout the room as they try to beat each other and Bruce Willis saying them.

            The whole scene is surreal. On the one hand, it’s exactly the right thing; Bob would be laughing and having a ball if he were here. And he is, only he lies snoring and drooling on his bib. Here, and gone.

            I pull up the quilt and press my legs close to his and hope he can tell I’m there somehow. His legs have turned sideways across the pillows now and it’s easier to snuggle up to them. They feel feverishly hot.

            After the movie ends, the boys pass the Scrabble game around again. The infamous Bailey digestive system becomes the subject of much hilarity. It seems they all love fried chicken, but it doesn’t love them. Whoever gets the Scrabble board, it seems like it’s his turn to fart. They crack jokes about this until even I am laughing.

            Bob’s heart rate is about 160 again.The hourly atropine appears to have helped; the rasping and gurgling have all but stopped, and although he’s still not breathing for twenty seconds at a time and then panting to play catch-up, he isn’t breathing as hard now.

            By two-thirty in the morning it looks as if this could go on many hours longer. Bob seems stable for now, weare all yawning, and everything everyone says to me takes five seconds to penetrate. Then Sean remembers: He left his medicine an hour and a half up I-95 at Adam’s. Nobody thought today would be the day, that they might have to stay all night. And Adam needs to walk his dog.

            “We’re gonna go back up to my place and crash for a while,” Adam says. “If we stayed here we’d just end up falling asleep anyway.”

            Already accustomed to being up all night at his job at Amazon, Eric volunteers to stay up and continue the hourly meds. I unplug the baby monitor from the bedroom so he can use it if he’s on the computer, and then I stumble into the bedroom that’s now solely mine again. I collapse onto the mattress on the floor, still in my clothes in case I have to jump up suddenly.

            Oh my God! A night without the baby monitor! But I find that I cannot sleep. I lie there awake in the darkness for what feels like an hour and a half. My entire body hums like a live wire. I keep picturing my husband, dying in the next room. Any time now, I will no longer be married and a new life all alone will begin. I used to believe in such things as a soul, and that that part of him would have already left his useless body, moved out of the brain that is slowly being crushed by the tumor, and removed itself someplace peaceful and high above, looking down with compassion on us all. After the constant rain of catastrophe, calamity, and tragedy over the past two years, I no longer am able to think that way.

            I think of my husband, so handsome, funny and charming. I think of the wealth of information dying with him, about old Detroit and its mobsters and old-time, old fashioned strikes. About all he knew about firearms, private investigating, and writing. That all that can be here one minute and gone the next seems absolutely impossible, and yet I know it’s true.

            I hope I’m wrong and there really is an afterlife, because the permanent ending of such love, such wit, and such high spirits is nothing short of an abomination.

            I am thinking I will never get to sleep, and how am I supposed to stay awake and function tomorrow when I think I hear a knock on the door. I open my eyes; the sun is sneaking around the windowshade.

            Go away; I need sleep. Can’t I sleep even half an hour more?

            I hear the knock again and Eric says, “Linda? I think it’s over.”

This is truly wonderful, Linda. I felt like I was living it while I read.

Thanks. I hope I can remember the rest of things that happened this well.

Thank you. I'm thinking about something like this for the beginning: (Sorry if some spaces are missing. It does this when you copy paste. I try to find them all but I may have missed some.)

When My Husband Was First Diagnosed

When my husband was first diagnosed with the most malignant brain tumor there is, Idid The Internet Search, as I imagine most families do, looking for treatmentsand prognosis. The brain tumor support center at our hospital, the CullatherBrain Tumor Quality of Life Center, showed up the morning after my husband wasadmitted with the book "100 Questions & Answers About BrainTumors." I read, and I read, and I started to plan.

When my husband was first diagnosed, he was a struggling novelist who had received some critical acclaim but not much else. As I researched, two possiblefutures took hazy form like twin ghosts: one where he defied the odds, releasedanother book, found the success he had always hungered for, and we had a happylife for many years; and another full of increasing disability and a deathsomewhere around Year Two. I was prepared for the wistful sadness ofunderstanding that that triumphant announcement that we had defied the odds wasnever to be. I was not prepared for the sudden ninety degree drops and fullbelly rolls this disease will put you through.

In high school, daydreaming about the brilliant future as a doctor or a veterinarianthat my parents and teachers had always assured me lay in wait, I imagined myself tall, thin, always looking lovely and performing perfectly, handling allresponsibilities effortlessly. As I grew older and ran headfirst into thereality, I realized I had been stupid. (I’m not even tall.) I realized why noone in these professions, or in any profession, actually is that way: all people,not just sick people, actually have needs. I was really slow to recognize growingup that I actually was part of all people,that I actually had needs too, and I think some of this old Disneylandmentality was still operating as I researched GBM and what we were likely toface. I still had some of that idealized, all-capable picture of myself when my husband was first diagnosed, and while it kept us going, it caused a few problems, too.

I had a much prettier picture of disability than the one I rammed into likethe Titanic at four-thirty one memorable morning. You can read a line like, “Maybegin to see weakness starting on the non-affected side,” but it willnot prepare you for the utter consternation of finding your beloved on thefloor in a puddle of urine and you can’tget him up. What do you do when your husband needs the bedpan, but finds it impossible to actually use one? This is the kind of crap, no pun intended, that brain tumor books and websites don’t prepare you for. Real-life, stinky, real-world crap, real problems at four-thirty in the morning.

I had a much prettier picture of disability than the one I rammed into like the Titanic at four-thirty one memorable morning. You can read a line like, “May begin to see weakness starting on the non-affected side,” but it will not prepare you for the utter consternation of finding your beloved on the floor in a puddle of urine and you can’t get him up. What do you do when your husband needs the bedpan, but finds itimpossible to actually use one? Thisis the kind of crap, no pun intended, that brain tumor books and websites don’t prepare you for. Real-life, stinky, real-world crap, real problems atfour-thirty in the morning.

I expected to have to give up my own writing, not to have any leisure, to haveall my time taken up with laundry and cooking and nursing and working. I wasn’texpecting the episodes of dizziness and just plain weird sensations of tingling that would just rush from head to toeduring a busy morning at work as I struggled to cope with the sleepdeprivation. I didn’t know I’d feel like an absolute zombie for an entire month, that I’d get tongue-tied a lot and forget what drugs we had in the lock box, or that coworkers would stop speaking to me.

When my husband was first diagnosed, I had a very real fear of ending up bankruptand homeless. Happily, we managed to avoid that for now. I’m not making any promises about what will happen when I get diagnosed with anything terminal,but Bob at least was able to complete his journey indoors, through a combination of good planning and great good luck. I’m going to share what we did, and a few thoughts about our system and what could happen if we don’tconcentrate on making it work affordably for everyone.

Basedon what I read when my husband was first diagnosed, I had only the wispiest idea of what hospice was or when a person was ready to call one. I thought itwould be obvious when to make the decision. Nobody tells you that a personmight be rubbing exfoliating body cream into his moustache one day, thinking it’sshaving cream, and then be perfectly lucid the next, saying, “I want tocontinue treatment.” I didn’t know I’d be emailing the doctor one day that wewere ready for a hospice referral, and then emailing the next day saying, “He’slucid again. Would you be willing to continue with treatment?” and feeling like a total idiot. It’s tricky stuff, this brain tumor diagnosis.

From things I read on websites like Brain Tumor Hospice and on postings from some ofour GBM4Cure members, I had this gauzy peaceful idea that a brain tumor deathwas always a good death, that people just slept more and more and then theydied. I had this quiet picture of myself snuggled next to my sleeping aphasichusband like a faithful dog. Nobody tells you there are medications to be givenevery hour, that you might find yourself struggling to stay on top of pain, or that you may not be able to tell if your loved one is in pain or not. Nobody tells you that changing a diaper may be excruciatingly painful for your loved one, or that giving him a simple bed bath could make you feel like a butcher.

No,I didn’t know any of this when my husband was first diagnosed. But you will. As I share my husband’s journey to complete his last book and his last breath, I also plan to share some experiences from others in our group that were different from ours. I don’t think it’s possible to be prepared for everything thatmight happen. Brain tumor symptoms vary by location of the tumor and because of nebulous factors even the oncologists don’t completely understand. But I hope to create more of an understanding of the reality of the situations and the feelings you might confront…or that might confront you.

I've organized this in temporal order of the journey from diagnosis to end. At each stage, I talk about our experience, Bob's and mine, of that stage. Bob left us some personal writing about his own experiences that I will share. After each chapter of our story I present a "Practicum" chapter with some advice about how we got through it and what may work for you. Since everyone's experience is different, you may see some personal stories from other members of the GBM4Cure support group sprinkled in here and there, along with helpful articles by some of the members who had problems we didn't have and had to find their own way to solutions.

Welcome aboard. As we say in the group, we’re sorry you have to be here but glad you found us.

Crap, just lost my reply! Linda, what a great job you are doing! You have an easy open writing style that allows the reader to feel right here with you. I like your ideas for the format as well. What do you think of a section with emails / blogs from the gbm patient. I have learned so much from all the caregivers regarding their thoughts, feelings, fears....(and things I can and need to do to help alleviate my caergiver and family's fears and questions) Maybe some words from us would help the caregivers have a better understanding of the :impossible paradox: (as I call it) that we live every minute trying to affirm and enjoy our lives, yet also always thinking about our death at the same time...

I guess it would depend on what the posts were. As I complete each practicum, I plan to post it so members can share any thoughts and advice they have. Maybe that would be one way to do it, so different writings are grouped by topic? I don't know...

The other thing I don't know about, is compensation. Anyone whose material I use will have to be paid. I don't really know how to do that when for all I know this book, should I even complete it, will probably never make even so much as one red cent.