Le monde de fromage de Kate

One year ago I knew my Beloved Grandma would die today. I recognized the signs. By evening, when everyone else had left for the day, I was dosing her with the appropriate medications hourly. I intended to do it all night if needed. It was not necessary.

I’m still second-guessing myself; I find so many things that I could have done better – I could have made my Grandma more comfortable AND comforted. I know I must let it go, but the sound of a voice crying out in pain and confusion stays with you.

I sang to Grandma. I sang with more intensity than I think I’ve ever mustered; I sang with every fiber of my being. I wanted to sing the Pie Jesu from Fauré’s Requiem, but I couldn’t get my Mother’s voice out of my head. She sang it so beautifully at the funeral of Helen Ann Williams Pawlowski, one of the other dear Mothers of my childhood. And she told my wonderful Pamela, who always was a sister, really, that she was not an orphan; she said she’d be her Mother, too. You cannot sing when you remember that.

So I played it for her. And then I started In Paridisum on a loop. But you always think there is more time. I’m glad I had leaned down close to her ear and touched her face and given her my thanks, all my love and told her to go to my Grandpa, for he had waited almost sixty years for her.

Though I didn’t know it until a few minutes later, I heard my Grandma’s last breath, just as I walked from the room to get doses of medication. When I went back into the room less than a minute later, I stood there with my hands full of syringes of liquid medication – just stood for few minutes at the side of her bed. I thought she might start breathing again (it happens) but she didn’t. I went and put the syringes down and came back to check her pulse. 11:55 p.m. January 6, 2009. Time of death.

I called my Mother. She was not surprised. I called hospice. I received, by some miracle, a call from my friend Grettir before anyone showed up. Bless him for having miraculous timing, compassion and patience when my life falls apart.

I had the privilege of helping the hospice nurse prepare my Grandma’s body for the Funeral Home. With reverential care she pulled the access needle from the port and removed the other tubes, we took off the cannula, she cleaned my Grandma while I helped move her body, and finally we put on a clean gown on her. She had to dispose of all the medications and she left. The funeral home gentlemen came and before they zipped up the home-made quilted shroud, and though I knew she was gone, I kissed my Grandma on her cool, smooth forehead.

I might protest at this juncture in some other entry that I had a point. I’m not sure that I do, unless it is to say that some moments in your life will never be forgotten. And many of these moments are ingrained on my psyche forever.

I had entries written in my head for my Grandma’s birthday (in JULY) and for other occasions, but they never made it to the page. Well, the title did. For when I was alone a year ago tonight – so alone – after they took my Grandma away and my Mom left, I didn’t know what do to. I had decided to stay with Lucy, her cat. That’s when I looked at her things. That’s when I laughed at some of the “collections” and cried at the beautiful letters written back and forth between she and my Grandfather.

I put on her anniversary band – ten diamonds in a band of white gold. She bought it herself on her Fiftieth Wedding Anniversary and it was the ring I remembered her wearing the most in the last decade. She was a little embarrassed that she’d purchased it for herself, but we all reassured her that my Grandpa would have wanted her to have it.

The ring is mine now. At some point after her Birthday, I started wearing it not just regularly, but night and day. My LIVESTRONG™ and other wristbands are a fixture as well unless I’m showering or the like. The most recent, a colo-rectal cancer wristband sent to me from Germany – a gift from my beloved Soul Sister, Henrike, was purchased in my Grandma’s honour.

So day and night, I wear my Grandma’s ring. I sleep with the diamonds on, because I cannot forget one year ago tonight. Nor can I forget a lifetime in which my beautiful Grandma was always, ALWAYS there for me. I will love you forever, Grandma.

A year ago today I was sitting with two hospice nurses in my Grandma’s bedroom. She was sitting on the edge of the hospital bed that had been delivered earlier (which the delivery man so kindly switched about with me AFTER the frame was put together so it faced the “right” direction). My mom was in Kansas. My uncle was on his way from Washington State.

One year ago today the nurses were asking her questions. She could answer some. I helped with others. She could scarcely make a mark on a piece of paper any more unless we gave her a marker instead of a pen; she was so frustrated.

One year ago today I wanted to be able to tell them there was no time. While the nurses were wonderful – knowledgeable, kind, honest, comforting – I sat wishing there had been time to say, “THERE IS NO TIME. She will not be alive by the time the musical thanatologist can be here. She may not make it to the day that she could have a bed bath. She won’t be able to speak – literally speak – to the counsellor. Ah well.

One year ago today is somewhat a blur, though some moments have stayed stayed with me with such clarity that I feel like it was yesterday. I remember rushing through the drive-through at Wendy’s because it’s so close to the condo and I’d only had coffee that day. I remember finding bedding for the hospital bed and thinking that I was making the bed in which she would die. I remember that the weather started out clear but SO cold. I helped the medical supply delivery man carry things up the stairs. He kept saying I needn’t help, but I said I didn’t mind. I needed to do something.

One year ago last night I had stayed at the hospital after Grandma was admitted after that endless day in the ER on January 2, 2009. That was after she’d been on the floor for possibly hours. I was supposed to take her to an appointment and she didn’t answer the phone to tell me when. I think I knew on some level that she was NOT just getting ready. I don’t think I didn’t wanted to call the paramedics again. I think I knew it was the end. I should have… I should have done many things. But I must lay that to rest. I know I must.

One year ago yesterday: All day in the ER. Scans, blood tests, more scans (some I kept saying, “she’s just had those”), more tests… Calls to her oncologist. The first time in my life I’d EVER seen my Grandmother confused (she was completely with it even when in renal failure months before that). And late that night, the doctor and intern asked me to come out and speak to them. Then they thought better of it. They came into the room and I stood across my Grandma’s bed from them while they explained that there was unusual and horrifically rapid metastasis from the lymph nodes (about which we knew) to her lungs and to her brain. I remembering covering my mouth with my hand; I don’t know why. What could I say?

One year ago last night the doctor and the intern said that her oncologist said that she could have part of the transfusion that had originally been planned for the day if she wanted it. It was established that it might make her feel a little better (and somehow they let me know that it was not cruelly life-sustaining). She said she’d take it. Then we waited, again, for another doctor to admit her. I had to step into the hall and called to tell my Mom that she had to come home right away to see her Mother before she wouldn’t know she was there.

One year ago last night SO many calls then and the next day in the halls of the hospital. One so that my meds could be brought so that I could stay with her that night. Many others to family, to her church, to ask my older sister which hospice she’d been researching. I was on the phone, huddled against the wall, weeping – I don’t know who I was talking to – and I remember one of the social workers (was it a nurse?) coming by, putting their hand on my shoulder for a moment, and walking on.

One year ago today this morning, the oncologist, wearing his University of Utah Hoodie, stood in the hall with me while they were x-raying an injury of her arm. The process was hurting her. And he just sensed what he could say to me. He said, slightly exasperated, “What are they going to do if it IS broken?” He told me that he was really surprised about the metastasis. He’d seen her on New Year’s Eve; she’d walked right into the office. He thought there MIGHT be spots on her lungs. He studied the films (which were a few weeks old) at length. But he also knew she had had pneumonia.

One year ago this morning he said, “She has a few days to a week.” “Probably closer to a few days, as she’s not eating [hadn't eaten in the ER and had only had a popsicle in that day].” Then he walked into her room, told her she looked horrible (which made her smile and almost laugh). He said, “Let’s get you out of this horrible place. We could radiate the brain tumor, but I don’t think it would give you much. I think you’re very, very tired and want to go home.” She nodded.

One year ago today, because of some blessed miracle, bureaucracy took a back seat. The necessary equipment was arranged for delivery. It was acknowledged that I could stay the nights with her, so the hospice team was contacted and scheduled to arrive. I barely had time to get back to her condo and figure out where to put the equipment before she was transported home.

One year ago today my Beloved Grandmother came home to die. And one year ago today I promised her she would not be alone.

In short, please wear yellow and think pink!  Do the first in support of the important cancer awareness, recognition, fund-raising and remembrance activities taking place all around the World for LIVESTRONG™ Day.  The second I’ll talk about tomorrow (in the meantime, please visit the Pink for October website).

As for my LIVESTRONG™ Day activity, I am, even at this late (early) hour not certain I can make it happen.  I will post more information later today.  BUT, never fear, there’s always someone who’s on the ball.  If you visit the LIVESTRONG™ DAY 2009 page you can find an activity in your area in which you can participate.

Lastly, please make a difference with this quick and painless activity: Sign the “Healthcare Reform Now” petition.  Together we can encourage Congress to pass life-saving health insurance measures that would protect cancer survivors and others.  As a special bonus, you can try and find ME (or, rather, a portion thereof) in the photograph on that page (and, evidently, a number of others – I’m the LIVESTRONG™ “Find Waldo,” it seems).

Call me lazy (really – go right ahead if you must – I’ll just lie here and take it), but I think this says it all:

Last month when I started the Tour de France, I asked you to join me in signing the World Cancer Declaration. Your response has been staggering —you and more than 100,000 others added your names to this urgent global push to fight cancer.

In three days, the LIVESTRONG Global Cancer Summit here in Dublin will come to a close. It’s an incredibly rare opportunity to urge some of the most powerful people in the world to commit the time, energy and resources needed to make a world without cancer a reality. And we can do just that if we add 10,000 more signatures to the Declaration before the Summit ends on Wednesday.

Will you ask your friends and family to help us add 10,000 commitments by Wednesday night? It only takes a moment and every name counts:

http://www.livestrongaction.org/campaigns/spread_the_word

Cancer affects all of us. By 2010, cancer is projected to become the leading cause of death worldwide, yet the fight against cancer lacks urgency and focus. That is why we must take matters into our own hands and force cancer onto the global agenda.

The LIVESTRONG Global Cancer Summit in Dublin will do just that by bringing governments, communities and survivors from all over the world together pushing for new commitments to stem the growing impact of cancer around the globe. Closing this commitment gap is a critical step towards a world without cancer.

We have just three more days to make the World Cancer Declaration as powerful as possible. Every additional name we add will lend weight to our cause; every single new voice adds urgency to our fight. I know we can reach our goal if each and every one of us asks someone close to join the fight.

Will you ask a friend or family member to join us before Wednesday night? It only takes a moment and will make a big difference:

http://www.livestrongaction.org/campaigns/spread_the_word

LIVESTRONG,

Lance and the LIVESTRONG Action Team

P.S. From August 24–26, individuals from all parts of the world are uniting in Dublin, Ireland, for one goal—a world without cancer. Visit our blog for the latest updates from the LIVESTRONG Global Cancer Summit.

How can you argue with that?

Just a quick PSA from The Lance Armstrong Foundation:

Pre-order the LIVESTRONG Guidebook today.

The LIVESTRONG Guidebook is hot off the press. And you have an exclusive chance to pre-order this valuable resource for free this week only.

The LIVESTRONG Guidebook helps guide survivors through the cancer experience from the moment of diagnosis, during cancer treatment and after treatment.

Guidebooks should ship within the next four to six weeks. Future orders will include additional charges, such as shipping and handling. So pre-order the LIVESTRONG Guidebook for free today.

Offer expires August 9, 2009. And if you are feeling sassy, you may use THIS LINK instead of the one above.

I’m realizing that I’m shamefully out of the loop and need to check and see if the LIVESTRONG™ Guidebook replaces the lovely and information-packed LIVESTRONG™ Notebook (of which I have about three billion that I meant to give to anyone who needed or wanted them) or if it is different entirely. I’ll let you know. In the meantime, consider this a very belated announcement, indeed, that if you would like a LIVESTRONG™ Notebook or some LIVESTRONG™ wristbands (or any other information concerning The Lance Armstrong Foundation), please let me know.

A wee bit ago (okay, last September), I asked you to support the LIVESTRONG™ Global Cancer Initiative. Now, with more urgency, I’d like to make the same request. Please consider the following message from Lance Armstrong:

I returned to cycling this year for one reason: to fight for the 28 million people affected by cancer worldwide.

We are making tremendous progress in this fight, but there’s still so much to be done. By next year cancer will be the #1 killer in the world and yet most of the world’s leaders lack any real plan to fight back.

During my 20-day ride in the Tour I’m calling on leaders around the world to make major commitments to fight cancer worldwide – but I can’t do it alone.

As a first step, will you join me and sign the World Cancer Declaration – a major global push to pressure the world’s leaders to act now on cancer?

http://livestrongaction.org/campaigns/commit-fight-cancer

As an added incentive, a donor has pledged to give $30,000 if we can collect 30,000 signatures before the end of the Tour.

I’ll send these signatures to world leaders after the Tour de France and pressure them to make cancer a priority in their own countries. It’s our best chance to push for better treatment, more funding for cancer research and access to care for everyone around the world.

Without your commitment, these leaders won’t pay attention. Will you sign the declaration then ask your friends and family to do the same?

Do it for family or friends. Do it for strangers. Do it for those who have fought and won and those who we have lost to this insidious disease. Do it for yourself or for your children. Do it for the World.

I have a list far too long of people to whom I could dedicate this declaration. Today, I choose two survivors:

The Bride dances with her Father-in-Law.

It’s not the most transcendentally beautiful wedding shot, but that is SUCH a “Sarah” expression that I went with it anyway. What we’ve really got in the image is Sarah dancing with her new Father-in-Law. I’ve written ad nauseum about Sarah’s cancer journey – like this. Dennis is another story. Dennis has thyroid cancer (well, technically, I believe they’re to the point that they will say he “HAD” thyroid cancer). He had surgery (and complications) during the wedding planning phase, at the insistence of medical officials. He put off, however, the next phase of the treatment (during which the patient becomes radioactive – literally) until after Robert and Sarah’s wedding (and a close cousin’s wedding a week after their wedding) so he wouldn’t miss anything. He was exhausted; he felt horrible, but he still was there for them.

So please – PRETTY PLEASE – go to the LIVESTRONG™ Action Page and sign the declaration and dedicate your signature to someone who is or was there for you. It will only take a moment, but the impact could last a lifetime. THANK YOU!

P.S. BONUS! My thigh is in the main picture on that webpage. Seriously. My left thigh, my Summit badge and a small portion of my shirt.

UPDATE, November 12, 2009: I apologize, but my thigh, et al. are no longer a part of the aforementioned page. On the landing page you will, however, see a bit of my “Back-East” Hair and LIVESTRONG™ hand. A different viewpoint of my ultra-powerful LIVESTRONG™ hand is also on the page to which you click through.

March 5, 1949 was the worst day in my Grandma, Evelyn Monson Lee’s, life. A Chaplain from the Air Force came to tell her that her husband, Charles Shirley Lee, had been killed in a horrible plane crash at Promontory Point along with four other young men. She did not remember that details of that day – or many of them for a while thereafter. We only know these details from her relatives and a letter I recently found from that Chaplain. She was five or six months pregnant with my Uncle Chuck. My Mother was not yet two years old.

After Chuck was born she sat for about a year in her in-law’s garage apartment and rocked her precious baby boy. Then she got up, went back to school, and prepared to take care of her family. The little family lived for years in Bozeman, Montana in the basement apartment of her parents (wonderful people I was privileged to know until they passed away when I was a teenager) while she finished her education. They moved to Provo where she became a Professor as Brigham Young University in Textiles and Clothing. After both children had married and moved out, she eventually bought a condo in Orem in which she lived through her death.

This past year my Grandma faced a battle with colon cancer that prompted her to tell my Mother that it was the “worst thing that had ever happened to her.” My Mom had to remind her about that day, almost sixty years ago, when she became a very young widow.

Because she was a widow, my Grandma was always there for us; she attended every birthday, Christmas and special event she possibly could. When we lived in Stanford (where Janet and I were born), she came to visit, evidently prompting a toddler Kate to walk around after she’d gone home repeating, “Oh dear, oh Dear, OH Dear!” When we, too, lived in Orem, and she was still young enough to tolerate a night on our couch, she stayed over on Christmas Eve. In my memory, her overnight bag was just like the tiny valise the Grace Kelly pulls out in Rear Window. She always had silky pajamas and a satin pillowcase (it influenced me so strongly that I got my first satin pillowcases as a child and now I’ll only sleep on a silk pillowcase). Yes, she was always there for us. And she went to Washington state as often as she could so that she could visit my Uncle Chuck, my Aunt Mary Ellen and my cousins.

I wish we could have been there more for her this past year. My Mom did as much as was humanly possible; she is amazing. I helped as I could. And Grandma was accustomed to being alone and sometimes preferred her solitude. She had always been shy. My Mother said at Grandma’s funeral that she didn’t think she’d ever have married had my Grandpa not inadvertently been “put in her way” when he was a lodger at their house when he was working in Bozeman.

But she was afraid. Her “normal” anxiety was naturally magnified; she was so frightened.

I’ve gone through some of the details from the beginning of her diagnoses, but for now I’ll skip some of the middle. It was pretty horrible for her, and I can’t say that it was easy for those around her. She was living at home, trying to eat and drink enough, trying to…try. But we were concerned. She seemed too weak, but we knew if she was to go into assisted living she’d give up entirely.

She’d decided that she wasn’t going to take any more chemo despite the recurrence of the cancer in her lymph nodes. She couldn’t handle the idea and theoretically her prognosis, even with treatment, was a couple of years. She’d gone to see her oncologist on New Year’s Eve day so that he could give his assessment of a chest CT that was about three weeks old. My Mom said he studied it and studied it. He decided that she’d had pneumonia while at post-surgical rehab (which was very possibly the case). He told me later that he thought he saw some infiltration but it was really hard to say.

We took her back and forth to Christmas Eve and Christmas breakfast and dinner. She saw my beautiful youngest niephew, Bela, blessed (though later we found that perhaps a decline was more ominously at play because she said to my Mom the next day that she thought she’d driven the wrong way down the biggest street on her way to the chapel). She came to New Year’s Eve and she got sweet, tender hugs from a visiting Paisley. She had New Year’s dinner with us. When my Baby Brother was helping her up the stairs she said something about how she couldn’t see.

On Friday, January 2nd, I was supposed to take Grandma to get a transfusion. We all thought that it would help her strength. My Mom was going out of town, but called Grandma that morning before she left and said she sounded fine. I started calling her to see when the appointment was and kept getting no answer. I think on some level I knew something was wrong, but subconsciously perhaps I didn’t want to face the reaction my Grandma had the first time I called the paramedics to come and get her (though she did go) – I don’t know. I finally just showered and went to her condo. And indeed, she was on the floor, attempting to half-sit in a vaguely comfortable position (she had a pinched nerve in her left leg/hip and had pulled tendons as a consequence trying to shift herself). I tried to help her up; she’s lost so much weight this year and I thought I could do it. But I realized that even if I got her up she wasn’t walking anywhere; she’d been on the floor for hours – she couldn’t say how long for certain. I told her I needed to get help and she did not argue with me. I laid her down for a second with a pillow under her head and called 911. Then, because it was more comfortable, I sat on the floor behind her so that she could lean against me as though I were a chair.

In the ER, I saw something I’d never, ever seen before; I saw my always intelligent, well-read Grandmother confused and unable to remember very basic things. I had been in the ER with her when she was in renal failure and she’d been more “with it.”  They performed test after test after test, including a chest x-ray, a chest CT, a head CT, ultrasound to rule out a clot, a million blood tests. Nothing to eat or drink (which I didn’t push considering the circumstances). The ER physicians consulted with her oncologist, I told them in private that she’d never been that confused and perhaps it was because she was anemic and had been on the floor for too long – she did need oxygen. I also told them that she denied pain and depression (in the best of circumstances). More time passed. At one point she didn’t know my name. That night, the doctor and the intern came in, said, “Let’s step outside” and then the doctor changed his mind and we stepped into the room with my Grandma.

By some twist of fate, I’d been the one to take Grandma to the appointment with her oncologist during which he told her that “it wasn’t good,” that the cancer had reoccurred in her lymph nodes. That night, the two doctors stood across the bed from me, my Grandma looking frail and tired like I’d never seen. They proceeded to tell me that the cancer had metastasized so fast and so far that it was everywhere. It was distending her abdomen, it had completely infiltrated her lungs and it was all over her brain. They had to admit her, as she certainly couldn’t go home as is. They said that she wasn’t really that anemic, but that she could still have a transfusion and might feel a little better. She was aware enough to sign a DNR form with the admitting doctor who said that Grandma would see Dr. Tudor (her oncologist) in the morning.

My Dad and Baby Brother brought my meds to the hospital. I attempted to sleep on one of those hospital chairs. I tried to make sure that they knew not to pull on her left arm and leg if they could help it. I got a bubbler for her oxygen. I’d made a million phone calls in the ER – my Mom needed to come back from Kansas, she needed to call my Uncle Chuck and my siblings. At five or so in the morning Grandma wanted to sit up. I helped her sit on the edge of the bed. I asked her if she wanted water or a one of those little sponges to wet her mouth. No. Then I remembered what I’d heard was “delicious” (the first time she’d said anything like it in six months) when she was in the hospital dehydrated and starved, her kidneys amazingly coming back from failure: A Popsicle. So I got her a blue Popsicle, prepared just as she liked, broken in half in a Styrofoam cup. She could hardly grasp the stick – she kept dropping it into the cup. But that made her all the more determined to finish it (which she did). They brought her pills (the woman takes hardly any pills, really, as it is – I outdo her in that respect at least five-fold). She HATES pills, but she was determined to take the water herself and do the job. She ended up having her gown and her entire bed changed, which just exhausted her.

Dr. Tudor came to see her. He told me very frankly that the change in the chest CT from three weeks prior to to the one from the night before was pretty horrifying. And as for the brain tumors, she had one on the right side of her head that was pushing hard against her brain/skull; this certainly accounted for some of the confusion and loss of memory, not to mention her rapidly declining strength. He said that she had anywhere from a few days to a week, considering that she wasn’t eating or drinking as of then (and it was not kind to push it at that point, obviously, as her body didn’t want it). He asked if we’d arranged hospice and I told him that my Sister had been trying to schedule a visit so we’d have things in place. Bless Shirleen for having thought of it when she did.

He told Grandma “that it was bad.” This was after he’d walked into the room, told her “You [she] look[ed] terrible” and made her smile. He essentially said, “I know you’re tired and you just want to go home. Let’s get you out of this horrible place.” I’d offered to stay with her; at home twenty-four hour hospice care isn’t a reasonable option in this area. I promised her I’d be there. Between the social worker, Dr. Tudor and Applegate Hospice everything was in place within a few hours. I went to her condo where a hospital bed, oxygen, etc. were delivered. Grandma was transported next. Soon two nurses from hospice arrived. She was home with Lucy, the cat who spent the year in anxious concern for her.

After being carried to the hospital bed, Grandma wanted to sit on the edge of the bed. I got her one of her own housecoats (because hospital gowns SUCK). She drank a little juice. She sat there when the nurses from hospice came to do “intake” and meet her. In the ER, she’d still managed to sign some paperwork herself and even lying on her back and in her confused state her handwriting was so much lovelier than mine it’s just a crime. That day, with a regular pen, she couldn’t put enough pressure on a piece of paper to write. When we got her a pen more like a marker she started to take a “test” they provide to see the state of the patient’s comprehension and ability to follow directions, etc. In the meantime, I signed all her paperwork, including a POLST form. We realized at some point that my Grandma was still laboring away at her sheet of paper. I have never seen such a combination of determination and confusion at work. All of the sudden she decided she was GOING TO WALK. She let one of the nurses support her and we asked her where she was going and she didn’t say. She walked into her living room and sat on her piano bench. The nurses left, and she proceeded to watch, with obvious pleasure, Bela crawling on the floor (she throws a little doll ahead of herself and then goes to fetch it).

It was then obvious that she needed to go back to the bedroom, but when I tried to assist her, she gave me her “talk to the hand” gesture and said, “No, NO.” She has employed this gesture for a number of years when she wants you to stop talking – especially if you’re telling a doctor something she doesn’t want them to know – or she’s offered a treatment or anything not to her liking. And though its meaning has always been very transparently, “TALK TO THE HAND,” she imbued it with what I always felt was a Queen of England flavour. Anyway, I was petrified that she was going to fall. I repeated silently a mantra of “PLEASE don’t fall, PLEASE DON’T FALL.” Anytime I got too near her (though I was in some respects ATTACHED to her as I had her cath bag and her oxygen tubing – twenty-five feet of it – and was desperately trying to keep it from tangling all together or tripping us both) she would say, “No, NO!” My sister-in-law reflected later that it sounded like she wasn’t talking just to me, but to the World; she was protesting the meteoric, horrid theft of her strength. She was losing her ability to move as she wanted. Her dominant hand wouldn’t cooperate. She memory – even her ability to speak were failing her as mere hours passed.

My Uncle arrived that night. She was obviously delighted to see him, but she couldn’t say much. I tried to leave them alone. But he is such a private person, and since she hadn’t much she could say, I thought I’d try to get her to take some of her pills (just the ones I thought might make her more comfortable). I knew if anyone could convince her to do something, it would be him. But she wanted to handle the pills AND the water herself. Let’s just say that it was a debacle and those pills were not ingested. She DID let him cut off her three hospital bracelets which she would not let me do. (I guess the image of me coming at anyone with a pair of silver scissors is always frightening, given my history with sharp objects – especially if your eyesight is rapidly failing – must be a horrific image.)

He left so she could sleep, and Lucy and Grandma and I spent our first night alone. She struggled breathing, some, her wheezing was getting worse. For a number of years now, she’s done what I call, “The Hairball Thing,” when dealing with congestion. As to this…phenomenon, I will not elaborate. And it will be my only “delicate” omission (I couldn’t do it justice anyway). She did sleep some; her snoring was comforting when it came. I already felt so helpless. I didn’t know how we were going to ever get her medicated appropriately. They’d left a kit with meds – strong meds – that were in liquid form. I had mentioned that I didn’t know if we’d get her to take anything by mouth and wondered if there was a way to deliver medication through her Power Port without adding an excess of fluid to her system that would merely prolong the struggling of natural organ shutdown.

The next morning, after another visit from my Baby Brother, my Sister-in-Law and Bela (Bela managed to make her smile when nothing else could) I assisted her in sitting up and getting some water. I brought her more than I had intended (I was trying to get it the correct temperature – not too cold, not hot) and a bendy straw as an afterthought. She insisted on holding the cup. She struggled to get the straw to her mouth, but she insisted on drinking the whole glass of water BY HERSELF. I was hovering on her bed, next to the hospital bed, waiting to catch the cup as needed. Several times I thought it was empty and went to take it away. I received WITHERING looks for that, I can tell you.

My sister, Janet, and her family came from Tooele to visit. Janet asked her how she was and she actually said, “So-so.” It was by far the closest she’d come to admitting that not everything was honky-dory. My Mom arrived. She’d had to get up at 1:00 a.m. to make the flight back. I don’t care how old you are, sometimes the most welcome sight in the World is your Mom.

The days were already becoming a blur. Grandma had some Frosty, which she loved, giving me a deep and abiding respect for the Wendy’s® Frosty. Uncle Chuck came back at some point. Eventually, I went home. It was time for clean clothes (after three days – yes, gross) and a shower and a nap during which I attempted to sleep without keeping one eye and ear at the ready. Evidently she insisted on the entire water routine with my Mother that evening and much less than the amount she’d had earlier took a half an hour or longer to finish.

That night was horrible. I promised myself, when I learned about end-of-life and palliative care at The Division of Medical Ethics, that I’d never, ever let someone I loved suffer because of lack of knowledge or resources. I broke that promise that night. Grandma was having more and more trouble breathing. I’d been gradually increasing her oxygen flow, but the infiltration to her lungs was racing along. She would mumble, “Help me, help me…” and then when I went to her and asked what I could do or asked what was wrong she would say “Nothing.” She also repeated, “I don’t know, I don’t know…” over and over and over again. I finally just told her that it wasn’t her fault. I asked her if I should call the hospice nurses and see what we could do to relieve her anxiety, breathing and pain. She kept saying no. I shouldn’t have asked her. I knew she was mentally altered, and I should have called and used the resources available to at least give her some relief from her anxiety. I have never felt so helpless, even though in retrospect I know I could have and should have called hospice.

I had to do something. I found myself sitting on a footstool next to the hospital bed, with a book of hymns and a tiny blue LED flashlight. I sang anything and everything I thought might be comforting. She was trying to tell me something – pointing vaguely past me. I have no idea what she wanted. She seemed to sleep a little eventually. It was a long, long night.

The next day the hospice social worker called, wanting to meet with me and my Mom. We arranged a time, and I explained how concerned I was about Grandma not being able to take pills and her resistance to pain meds in general. He called her nurse, and she arrived that morning. She got Grandma to take some liquid anti-anxiety medication (with some Frosty as a chaser). We moved her for some reason, and it was patently obvious how much pain she was in, so she took pain meds from the nurse.

The days were definitely becoming a blur. We met with the social worker at some point, the hospice aide arrived; she had an appointment to give Grandma a bed bath on Tuesday. I hadn’t medicated her enough and it was a painful process. She slept Monday night; it was a relief.

My Uncle had to leave. The nurse was there at the time and she and I both thought that Grandma was going to break down, but she didn’t. Each day I was sent home to sleep a little and shower and whatnot. Family came and went. Shirleen brought Will’s tiny poodle to visit, as promised. Ironically, HE was dying (though Grandma was too out of it to know that). She petted him a little, and then she and the tiny white dog slept together for a while.

Tuesday I knew that it would not be much longer. She was receiving the maximum amount of oxygen that the equipment would deliver, yet it still took every single muscle in her abdomen to breathe. My Mom and my Uncle had, at some point during those days, both said goodbye in their ways and gave her permission to “let go.” When I stood next to her I thanked her for her life, for being a wonderful Grandmother; I thanked her for being there. I told her she could rest now, told her she could finally go to Grandpa – anything that seemed right at the time. They say, after all, that a person’s hearing is that last sense to go.

I decided that evening that I would just stay up as long as necessary dosing Grandma with the necessary meds every hour. I didn’t want to hover over her every second – maybe I should have – I could have sat and held her hand. Yet second guessing is too easy. At about 10:30 or so I started up my computer so that I could get some lyrics from a song that’s gone through my mind a lot for the past two years; I just couldn’t remember the first part. The crux of the lyrics is, “May you find your way in peace.” I sang it to her then. I sang with more intent to reach her than I’ve ever mustered in my life. Then I turned on Pie Jesu from the Fauré Requiem. After repeating that a number of times I turned on In Paradisum and let it repeat over and over again.

After 11:30 she had stopped breathing once and then started again. I expected that to go on for a while, so at 11:55 p.m.I walked into the kitchen to get another dose of meds. When I came back my Grandmother was gone. I suppose I heard her last breath, but in a final private act, to the glorious strains of In Paradisum, she slipped away when I was out of the room. I stood with all the syringes in my hands for a minute or so, not knowing if she’d start breathing again. I went and put the medicine back, finally, and checked her pulse. Gone.

I called my Mom. Then I called Hospice. They liaison with the funeral home. A nurse arrived, and with great dignity and care she removed the various tubes. I helped move my Grandma as the nurse cleaned her a little and arranged her in bed. I actually was going to warm the bath wipes in the microwave, as the aide had asked us to do earlier for her bed bath. The nurse and my Mother just looked at me when I said, “It’s 15 seconds, right?” Some things are just too unreal. The nurse disposed of the liquid meds (no morphine or methadone, etc. with which to play, I guess). The funeral home men came and removed her body. My Mom went home.

That was four weeks ago yesterday night. I felt strongly that I couldn’t leave Lucy (the cat) alone. Animals know when something is wrong, so she’d had a very long year, too. I’d been keeping somewhat “normal” hours, but I immediately reverted to my bizarre ever-evolving schedule. I couldn’t just go to sleep. I started to look around with an intent to start sorting things; I thought I might as well be useful.

My Grandma, let’s just say, had a weakness for beautiful things – expensive shoes, LLadro, Waterford, Steuben, more books than a library – and a surfeit of dust. I had to take my brain somewhere else, and it made me laugh and shake my head to find twenty or thirty tubes of Esteé Lauder lipstick here and there and everywhere. I found twenty or thirty Sucrets® tins from various eras – some with actual Sucrets® in them and some with what I can only call miscellany. It made me so proud to see some of the amazing things she’d sewn and worn. It was wonderfully nostalgic to find sweaters that my Great-Grandmother knitted. I’d been forewarned, but finding my Uncle’s umbilical cord still made me squeal.

I don’t know how many days I spent there with Lucy. They came the day after Grandma died and took away the hospital bed and the equipment. Funeral arrangements were underway. I went into her storage unit downstairs to get some framed pictures I’d found on another occasion. I happened upon a box full of love letters that my Grandma had written to my Grandfather when they were engaged and he was away working. In the same box was his funeral program, letter after letter of condolence and the cards that had been attached to pages and pages of floral tributes (according to the notations in his memorial signature book). That was heartbreaking. It took me back to the worst day in her life and wonder again how she survived it all. Here’s an excerpt of the first letter I happened to read, which, under the circumstances resonated profoundly:

After the funeral, (right before which I slipped a small black, ceramic poodle into my Grandmother’s casket), I slept most of each day, spent part of the wee hours with the computer and hackneyed syndicated television shows. The hours in between I devoured murder mysteries with a fictitious Jane Austen as the heroine (combining two of my Grandmother’s favourite genres: Regency fiction and mysteries). Then I drugged myself to sleep. I’ve been the very portrait of dissolution.

I don’t know what’s been plaguing me more: Broken promises and dwelling on “I should have…” and “I knew better.” Or, in the very throes of self-absorbed thinking – particularly, the idea that I will die alone (oh yes, it’s all about ME). I mentioned this in passing (and tears) to my Mother, who, having plenty to do without indulging my newest self-induced despondency, proceeded to tell me a story about someone who had no children or spouse who had a niephew step up and take care of them as they died. From this I gleaned that the nugget of wisdom that I was to take with me was the following: I must start buttering up my niephews now and figure out who will be the most likely to take pity on me and preserve me from a completely solitary demise.

Another thing that torments my brain is this: NO ONE should ever have to die that way. I don’t mean to disquiet the many people who I know have lost their loved ones in this manner. Yes, it was a blessing that my Grandmother’s death was “fast.” Like I said, I cannot fathom what a prolonged deterioration would have done to her. And because cancer is still a constant and malevolent presence, it is a blessing that healthcare professionals are coming up with an increased awareness of services such as end-of-life care, palliative care and hospice, and the necessity of the improvement of this work. Management of pain is much better than it once was, the stark facts of the process of death are more well-known (thus averting unnecessary treatments that can sometimes even cause pain rather than prevent it), and patients – ideally – are receiving respect and their wishes are honoured when possible.

And I should say right here that I cannot state strongly enough what a godsend the hospice caretakers were for my Grandmother (partly in their support for me and my family – in helping us know what to do); they were incredible. They are angels. I must also express my gratitude for the numerous nurses, aides, technicians and the caring and skilled oncologist who cared for my Grandma. She was so lucky, and by extrapolation, so were we.

BUT, it’s not okay that my Grandmother became a statistic – one of over 560,000 Americans who die each year of preventable cancers. It’s unacceptable that she had to suffer the effects of an insidious and wanton replication of those errant cells. In the end, she lost basic abilities, speech, movement and memory – at first day to day and then hour to hour, and then, it seems, moment to moment. She was SO frustrated. And while we eventually were able to ameliorate some of the effects of the pain, anxiety and trouble breathing, I sat and watched my Grandmother, having had the best care possible, and being afforded the opportunity to be in her own home, struggle with every single muscle to breathe – taxing her already damaged abdomen and lungs. I saw the consequences of her brain tumors as they robbed her of the most basic human capabilities and, I cannot doubt, caused her extreme pain. It is deplorable to know that advanced metastasis in so many cancers, as was hers, drown a person in fluid that collects in a patient’s lungs and other tumors take over their very most basic of actions and thoughts. It’s not right.

Grandma said, not more than two months ago, with only partial facetiousness, that she was going to live until she was 120. She could have approached that goal. She was in such amazing health EXCEPT the cancer. Her strong, kind heart would have kept beating for many, many years. She was robbed and our family was cheated.

But this isn’t all about my soapbox; I will leave most of the intricacies of that for another time. Today, on World Cancer Day, I honour an exceptional life. This is about an anxious and shy young woman who met an extraordinarily handsome, funny, affectionate man who changed her life and would have continued to do so, had he not been stolen from her when they were just getting started. It’s about a woman who did not let this horrible tragedy damage her life beyond repair. It’s about a woman who had the strength to mange her fears so that she could educate herself and provide for a family. It’s about a woman who balanced a career (at a time when it was just not done) with motherhood. This is the story of a woman who was a wonderful mother (and grandmother and great-grandmother). It’s about a woman who was not naturally inclined to social pursuits keeping strong connections with her husband’s family as well as her own so that her children could know about their Father. It’s about a woman, not innately social, who had friendships that extended through many, many years and who respected differences in personality, religion and ideas. This concerns a woman who was still in regular and loving contact with a friend she’d known since she was three or four. It’s about a woman with fine talents who, despite her extremely shy nature, developed and shared those gifts for the gratification of others, and, I hope, herself. It’s about passing the deep love of the the arts and education to her children and, in turn, helping them develop their own talents. This is about a woman with music in her soul who passed that love through her children to her grandchildren who pass it to their children – an endowment of four generations.

I’m still in rather a fog. I’m trying to deal with the loss and the guilt and the sense of unfairness. One of the nights I was there Grandma said, “Don’t leave me alone.” I promised her I would not – I would stay with her – and I did keep that promise to the best of my ability. I hope I was worthy of the task. It was an honour to be with her, in spite of my feelings about the injustice of it all. And if I forgot to say it before, in the mist of those surreal circumstances, I will say it now. Grandma, thank you for always being there. Thank you for being a wonderful grandmother and an amazing person. I miss you every day. Also, I want you to know, that despite the nebulous quality of my convictions and beliefs (or lack thereof), I know that you will be together with Grandpa. It’s not about rationalization (though I am skilled, indeed, in that quarter); I just know it must be so. You’ve waited so long. He’s waited so long. I cannot conceive of it any other way.

I know this is an unforgivably long entry. I was going to cut it. Unfortunately, my brain is just not working that way. So here it ALL is, sprawled out before you. I look at it this way: I’ve not written anything in months, so people can take the next three or four months picking away at this post if they wish.

I’m going to finish with a bit of poetry. I talked about how frustrated and afraid my Grandmother has been during this past year. Still, I found a bookmark on the table next to my Grandmother’s favourite chair – the one she’d been practically living in – with this Dickinson verse on it:

HOPE is a thing with feathers that perches on the soul
And sings the tune without the words,
And never stops at all.

I teach musical theatre to over sixty students at the Barlow Arts Conservatory (where they mostly conduct amazing ballet training). My pupils range in age from four-years-old to young teenagers, though most are younger than ten. One student is male. Basically, I’m SURROUNDED by pink. My youngest class wears their pink ballet uniforms (including frou-frou pink hair ornaments galore in their obligatory hair buns), the rest often choose pink warm-ups to wear over their black leotards. Then there are the ubiquitous pink ballet shoes (when they aren’t showing off their cool, cool jazz boots for my class) and “ballet” pink tights. The older girls, naturally, have soft pairs, but also their treasured pointe shoes – pink ribbons required.

Now consider this:

Breast cancer is the most common type of cancer among women in the United Sates and is the leading cause of cancer death among women age forty to fifty-nine. It is second only to lung cancer as a cause of cancer death among women.

Breast cancer accounts for one of every three cancer diagnoses in women. Nearly 200,000 women will be diagnosed with invasive breast cancer this year and about 40,000 will die from breast cancer this year. An additional 60,000 new cases of in situ breast cancer are expected to occur among women this year.*

This week, I had breast cancer weighing heavily on my mind. Foremost was the recent breast cancer diagnosis of the mother of my wonderful and exotic friend, Terry. Also, I’ve been advocating online each day this week for Go Pink for October (Thank you Matthew Oliphant! And you, too, can be his FAN. Officially). I started thinking about my students. The American Cancer Society says, “The chance of developing invasive breast cancer at some time in a woman’s life is about 1 in 8 (12%).” And that’s not counting the cases of carcinoma in situ (the non-invasive and earliest form of breast cancer). If I round down my number of students to sixty, that means seven of them are likely to develop invasive breast cancer in their lives. If we extrapolate that to their mothers, grand-mothers, aunts, sisters, cousins and so on, the probability of these girls (Jack as well) experiencing breast cancer second-hand is mind-bogglingly high. At some point I’ll address the reality that Jack, too, could get breast cancer himself.

But for now, let’s stick for the most part to the present. I lost a beautiful friend last summer to breast cancer, and she was only two years my senior. No one should die of breast cancer before they are even forty. No one should die of breast cancer.

That’s why it’s time for Breast Cancer Awareness Month and time to GO PINK FOR OCTOBER. You know you want to. We MUST raise awareness about breast cancer symptoms, breast cancer risk factors, preventive care, treatments and research.

I, personally, promise that I will shout from the roof-tops about breast cancer in hope for my leotard-bedecked students, in hope for my wonderful niece, Sarah, whose Hodgkin’s Lymphoma (even AFTER a complete response to treatment) puts her at higher risk for breast cancer – not just because of the radiation therapy but because of the Hodgkin’s itself, in hope for my friends, family and colleagues, in support of the continuing breast cancer treatment of women like Dr. Lisa Cannon-Albright, a former boss of mine and, ironically, a member of the research team that identified the BRCA1 and BRCA2 genes (which are involved in the majority of the 5-10% of all breast cancer cases that genetically-linked, and their involvement entails HUGE increased incidence of young, family-linked and insidiously fatal cases), and in loving remembrance of those who have succumbed to breast cancer as Kari did.

*Information quoted from Susan G. Komen for the Cure website. Please visit for a wealth of additional information.

Many, MANY thanks to Jessie for patiently standing en pointe – and in dead pointe shoes – while I took approximately one zillion photographs.

I received GREAT news from Henrike. She received an anonymous transfer of donation funds from another LAF fundraiser into her account, giving her enough to make it to the Austin LIVESTRONG™ Challenge. And there’s not a better person to BE at the Challenge, considering the recently announced plans from the Lance Armstrong Foundation: The LIVESTRONG™ Global Cancer Initiative.

And what is the LIVESTRONG™ Global Cancer Initiative? Here’s the description straight from the horse’s mouth (?), so to speak:

More than 12 million people worldwide are diagnosed with cancer and eight million will die from the disease each year. To address this global cancer burden, the LAF will join with local partners, organizations and world leaders to achieve three major goals.

1. Together we will end the stigma of cancer and turn cancer victims into cancer survivors. Millions of people around the world suffer from cancer in isolation, victims not only of the disease but of social stigma. For all too many, a diagnosis of cancer can result in ostracism from colleagues, friends and even family, and cancer becomes a shameful condition that must be hidden. This stigma leads to a lack of early detection, failure to seek treatment and an increase in cancer mortality.
2. Together we will build an international grassroots movement that will take cancer from isolation to collaboration. Research shows increased mortality is often caused by a lack of resources and knowledge related to cancer awareness, screening, prevention, treatment and care. However, a third of cancers could be cured if detected early and treated adequately.
3. Together with world leaders, we will transform cancer from obscurity to priority. Cancer kills more people than malaria, tuberculosis and AIDS combined. However, many governments devote few resources to fighting cancer and collect little information about its causes and effects. The LAF will work with world leaders to focus on developing international partnerships, cancer advocacy, research and data collection. The Foundation will kick off this effort at the LIVESTRONG Global Cancer Summit in Paris at the end of the 2009 Tour de France

Please consider these amazing goals. Sign the World Cancer Declaration. Donate to the cause. GET INFORMED. Cancer is a World War.

A little Henrike update. This is part of an email she sent me the other day. I debated about splashing it on the world-wide web without permission and decided – HELL, YES!

Okay, this is getting ridiculous:

I had a LIVESTRONG Army booth at a regional cancer hospital, where I talked about the whole LIVESTRONG movement and gave away yellow bands when I suddenly realized that someone stole most of my LIVESTRONG magnets, buttons and wristbands. I had about 100 wristbands, 10 magnets and tons of buttons and they’re all gone, can you believe that? Never mind that I received the wristbands for free. I planned on raising some more money with those and they are all gone, now. I can’t believe those people! I was thinking about filing a report with the police, but they pretty much told me that they didn’t have any hope of them finding the thief, since I didn’t see him/her.

This is just wrong.

I’m sorry, Henrike, but I just want people to understand what you’re up against. Forgive a crazy lady? And in all fairness, to anyone reading this, I should tell you that after that previously quoted section in her email Henrike promptly tried to balance it out by giving me some positive news and, as always, generous encouragement.

So remember: You can give to a WONDERFUL cause (the Lance Armstrong Foundation) through an INSPIRING source (DUH – HENRIKE – click HERE to donate – or HERE – or, if you prefer, HERE) and she can actually go to the LIVESTRONG™ Challenge. She IS the International mentor, after all. And time is running out. I’m not harping am I? I don’t want to nag, but it is important… VERY important.

I know, “Shut up, Kate.”