Gwennie here

After reading Monica's most recent post and then talking to her on the phone, it occurred to me that this would probably be the best way to reach out and let everyone know that I'm doing okay. As Monica said, the emails and cards are so touching but so numerous that it's sometimes overwhelming to respond to all of them.

Again, I'm doing okay. There are moments when I think of Mom in a happy way. When I know I'm doing something she wouldn't approve of (like going over 65 on the highway), I feel guiltier than I ever did when she was alive. Sometimes a song that reminds me of her comes on the radio and I'll just smile. And then this morning it occurred to me that I had the bag of jewelry she had at McLean and decided to wear her beautiful (and totally ancient) Seiko watch. As I struggled with the clasp, I remembered helping her put on her jewelry when I was little before she went to work. Little memories like that pop up in my head all the time, and for that I am so, so grateful.

Then there are other times that I sink into a rut that seems impossible to get out of. I was walking around New York City on Monday and got a little lost because I couldn't remember if the even streets went east or west. My mom used to live in New York and would always be able to answer questions like that without skipping a beat. I typed "Ma" into my phone to find "Maman" and pressed Send. When I remembered a second later that she wouldn't pick up it was like she died all over again. Tears started streaming down my face under my sunglasses and all I wanted to do was curl up in a ball and cry. However, I kept trudging on and eventually met up with good friends was able to come out of it.

The amount that I miss her is the heaviest thing I've ever felt. But my memory of her, especially from the last 8 months, is like a warm blanket I can wrap myself up into and immediately feel close to her again. The other thing that helps is the emails and cards from all of you. I feel so badly because I don't always respond, but please be assured that they are more than appreciated. My sister and I have felt so supported through this whole process and feel especially so now. So thank you :)

I wish everyone a happy New Year. If 2010 isn't better than 2009 (or 2008, or 2007, or 2006, etc) I give up.

New Beginnings

Cliche title, but true.

It's been two weeks today since my mother passed. The first week was no less busy than all the weeks before, because even though we didn't have my mother to care for, there was lots to do. This past week is a bit different. It has been about marinating, sleeping, processing, sleeping, crying, sleeping, sleeping, sleeping.

Until now, it's been a cycle of being manically productive and "on," then crashing, but then having to pull out of it quickly to be back in the game. All of a sudden, there's no needing to rapidly regroup. Mom isn't waiting for me to recover from a mini-meltdown. I can actually slow down now, which has lead to the craziest development of all: I'm TIRED!

It is an exhaustion that I can only compare to that of a new parent perhaps. No matter how many hours of sleep you get, your body is still reeling from the energy spent for months on end. And the appetite! Where did it come from? I could spend endless hours on the couch, in pajamas, eating egg salad and popcorn. Oh- and cookies. Holidays + Deceased Mother = Mass quantities of cookie deliveries and 5 extra pounds. Bonus.

Emotionally, there have been a few surprises here and there. I got home to my condo after my first shift back on Christmas Eve and was in the best mood. I literally caught myself humming Rudolf the Red-Nosed Reindeer as I walked up to my door. Then out of nowhere, it occurred to me that I would never buy my mother a Christmas present again. Never. Then it spirals in to wishing I'd gotten her an early present this year, or wishing I'd splurged on something better last year, or wishing I'd just done more period. Somehow I always end up back at: did I do everything I possibly could?

This question haunts me. I won't ever know if any of those hundreds of options would have made a difference, all I can try to remind myself is that I did the best I could at the time. Decisions made seemed logical at the time, but now sometimes I wonder. The "what ifs" seem to be my greatest hurdle.

I wish I had the energy to respond to each and every one of you who has reached out to Gwennie and me. The mailbox overflows daily, and I have stacks of unopened cards that I haven't gotten to because I want to give each and every one of them the attention they deserve. The sentiments you've shared about our mother will sustain us, and the compliments you pay to us really aren't so much a reflection of who we are, but further testimony to our mom. We are who we are because of her.

This year has been a tough one, and I was worried about coming home Christmas night to an empty condo after my second day back at work. I got a little teary, but then I remembered last Christmas. I was having a hard day, and within minutes of calling my mom, she and my sister were in the car. Two hours later they arrived with cheese, crackers, and shrimp cocktail in hand. That night we went to downtown Boston and saw Marley & Me. A movie on Christmas night had been a family tradition for years. As we exited the theatre, Mom and I just trailed right behind Gwennie as she happened to turn in to another theatre playing Doubt which happened to be starting at that very moment, and before we knew it, we were having a two for one night at the movies. The one and only time I'd ever done this was with my mother: Housesitter and Sister Act. I will never forget it. This made me smile.

"Are you sure you want to delete: Mom?"

This is the tiny little window that stared me in the face from my cell phone this morning. I knew I had to bite the bullet and just do it: take "Mom" out of my phone. It's just a number, her phone is disconnected anyway, but still, it was a hard thing to do.

How come there was "no-I'm-not-sure-I-want-to-delete-Mom-but-I-know-I-have-to" option?

This is a quick post. I am back at work today for the first time since I left mid-shift after learning the cancer had spread to her cerebral spinal fluid. That was in August. I barely remembered what bus to get on. Gwennie too is back to work this week, taking it a day at a time.

We are really okay. I think how "okay" we are surprises people, but when you have the priviledge of sending your mother away peacefully and painlessly after months of decline, maybe the hardest part went away with her. Of course we have our moments, and who knows how tomorrow will feel, being Christmas, but as for now, we are holding strong and steady. If we were even to waiver the slightest inch, we'd be caught by a massive sea of friends, family, and co-workers who have engulfed us with love and support. It is truly amazing.

More to come about the wonderful service last weekend, with plenty of pictures and details. Thank you for checking in, and stay tuned.

Elisabeth Monique Guerlain Talbot

February 26, 1953 ~ December 12, 2009

Leaving a legacy of optimism, perseverance, courage and elegance, Elisabeth “Babette” Talbot, 56, of Avon, CT, passed away peacefully on Saturday after a long illness. Her daughters, Monica and Gwendolyn, and her husband, Paul Fischer, were at her side.

In addition to her dedicated daughters and husband, she is survived by her father, Bernard Guerlain of Nokomis, FL and Rockport, ME; her three brothers, John-Nicholas “Nick” of Denver, CO; Thierry of Montpelier, VT; and Peter of Boonton, NJ; as well as her four sisters, Claude Guerlain (Karpuk) of Northborough, MA; Natalie Denoyer of Fairfield, CT; Caroline Feroleto of Easton, CT; and Stephanie Guerlain (Haschart) of Charlottesville, VA; and all their spouses. The father of her children, former husband and lifelong friend, George “Pat” Talbot, of Justin, TX, also survives her. She was predeceased by her mother, Fanny Guerlain.

Babette cherished the gift of motherhood and time spent with her daughters. She reveled in the people who enhanced her life, and the individual relationships she developed with each member of her extended family on both sides of the Atlantic, including numerous aunts and uncles, 16 nieces and nephews, and 33 first cousins. She was a guiding light, a confidant and a mentor. Any encounter with her could burnish one brighter.

The entrepreneurial spirit ran deep within Babette, inherited from her father. She followed his example of tenacity, forthrightness and integrity in all her business endeavors. From her mother she gained a love of the fine arts and learned to carry herself forward with grace, self-confidence and determination. Babette was a self-described collector of art. In fact, she was an artist of life. She loved to play classical piano, go to the theater and the opera, and surround herself with art works of all types.

Babette grew up in Redding, CT. She graduated from Joel Barlow High School and Manhattanville College, after which she worked at Vogue Magazine. Upon moving to Avon, Connecticut, she became a well-known photography stylist and was Executive Director of the Connecticut Art Director’s Club. Subsequently, she developed a career in real estate, becoming a “Unique and Unusual Homes” specialist, before joining the corporate relocation industry.

Babette’s greatest career joy came from The Talbot Group, the independent relocation counseling company she opened in 2001. Over the years, she successfully expanded her business adding new divisions such as HomeWorks, SeniorMoves and AcademicMoves.

In both 2005 and 2006, Liz Talbot, as she was known in business, earned the Business Champion award from the MetroHartford Alliance for increasing year-over-year business revenues by more than any other company her size in Connecticut. Liz was accredited by the Women’s Business Enterprise National Council, active in the national Women Presidents' Organization, and spoke at relocation conventions throughout the United States.

Babette’s daughters, Monica and Gwendolyn, are especially grateful to her many friends, the mighty Helping Hands and the staff at McLean Hospice for creating a network of love and support throughout their mother’s illness.

A Celebration of Life will take place this Saturday, December 19, at 11:00 AM at the Universalist Church, 433 Fern Street, West Hartford, CT, followed by a reception at Abigail’s Grille & Wine Bar, Simsbury.

Babette truly believed in the power of integrative medicine. In lieu of flowers, donations in her memory may be made to Integrative Medicine/St. Francis Foundation, 114 Woodland St, Hartford, CT 06105.

extraordinary. every day.

Celebration of Life

Saturday, December 19, 2009 @ 11 a.m.

The Universalist Church

433 Fern Street

West Hartford, Conn.

Reception to follow immediately at:

Abigail's Grille & Wine Bar

4 Hartford Road

Simsbury, Conn.

All are welcome!

In lieu of flowers, donations can be made to the Integrative Medicine Program at St. Francis Hospital.

Checks can be made out to "Integrative Medicine" with "Elisabeth Talbot" in the memo and mailed to:
St. Francis Hospital Foundation
114 Woodland Street
Hartford, CT 06105

Questions, call 860.714.7451

Many have asked for Gwennie and my mailing address as well:

Monica and Gwennie Talbot

21 Boynton Street

Unit 3

Jamaica Plain, Mass. 02130

New Beginnings

I wish you could have all been there in the hours after our mother passed. Gwennie and I went downstairs to be engulfed by our family in a huge group hug. My mother had always said that her "perfect possibility" at the time of her death would have been to see all her siblings, her father, and have her brother-out-law Eric play the guitar. Sure enough, she saw every sibling yesterday (one via speaker phone, who she'd seen Wednesday), had a few hours of quiet time with her father, and a concert by Eric. Not a half hour before she passed away, the only sibling she hadn't seen yet that day sat at her bedside.

Yesterday feels surreal, almost as if one week was compressed into a day. I watched her breathing patterns change and maybe it was because I'm a nurse, maybe it's because I'm her daughter, or a combination of the two, but somehow I knew we wouldn't be spending another night in the family room. Gwennie took some time with her, just the two of them, while Matthew and I roamed the campus so I could fill my lungs with some cold fresh air. When I returned to my mother's room with one of her sisters, her breathing changed. Slower and deeper. We gave her morphine, we repositioned her, but somehow she was different. Not uneasy, but mechanical. Her spirit and soul had left her body, and with her sweet nurse Laurel, we prepared that this could be her time. Our wonderful Susan Eastman entered to visit at this time, but it was clear she was changing. It is a scary moment, because you just want to optimize her comfort and relieve any distressing symptoms. Laurel helped us turn her on her side and lay her flat to help promote easy breathing. I supported her head with my arm around her back and my other hand holding her face. Gwennie wrapped herself around her waist with her head in her lap, and Paul sat beside her on the bed saying words of encouragement and helping administer morphine as needed. It was amazing, because when we got her comfortable, her breathing immediately became slow, gentle, and almost inaudible. I'll never know if she really said to me, "I want to go," or if I just heard it in my head, but the next thing I knew I said, "you can. Breathe easy." And with support and words of encouragement whispered from all around her, she passed before Laurel even came back to the room. Just like that, she was gone.

The moments after are indescribable. The feeling of loss and sorrow cuts so deep and sharp, and yet you almost feel weightless because years and months of wondering, anticipation, and preparation have just come to an end.

Friends and family came, paid their respects, and sat with her. Gwennie crawled right up next to her and put her head right on her shoulder. Even after, she lent her girls support. To see Gwennie, comfortable, calm, soaking up this opportunity to be at peace with our mother's death, warmed my heart and I knew in an instant that we would be okay. My grandfather stood at the end of her bed and said, "Bon voyage, ma pousse," meaning, "good travels, little flee," which is a very common term of endearment.

When the funeral home came to pick her up an hour or two later, Gwennie, myself, my Aunt Coco, and Uncle Tommy walked with her to the elevators. As we crossed the balcony with all of our family below us, they let out cheers and applause. Just when you think, "oh maybe walking through the halls with my deceased mother might be a little scary," you're met with love, joy, and celebration. And it didn't end there...

Perhaps the most tender thing I witnessed yesterday was getting off the elevator and seeing my Uncle Peter and my 9 year old cousin Stephan standing there waiting for us. Mom was beautifully snuggled under a red, blue, and green quilt with only her flawless and peaceful face exposed. As we rolled by, Stephan just watched, and said, "I'm going to miss Aunt Babette." And slowly from around the corner the troops came marching in: her siblings Nicky, Peter, Claude, Natalie, Caroline, and Stephanie, along with our outlaws Tommy, Eric, and Kimberly, cousins Emily, Kip, Stephanie, and Stephan, our dear grandfather Bernard, precious friends Tom V., Lissa, and Matthew- the lined the way towards the door, giving kisses and good-byes. I couldn't help but sob, because Mom would have so loved that. She was the one who always set the example to us in times like these, that death doesn't have to be scary. It doesn't have to be frightening, or hidden, or protected from youth. It is natural and something we'll all be touched by at some point. She'd set such an example to us, and in turn we were able to thank her with the most flawless, spontaneous, and organic farewell ever imagined.

Gwennie and I walked her out and gave her final kisses once she was safely snuggled in the car. I've never been so proud to be part of my family as I was in that moment.

The night went on with a delicious dinner at Eric and Natalie's in to the early hours of the morning. Afterwards with full bellies, warms hearts, and swollen eyes, we got a good night's sleep. Today we'll have brunch with our family and then head back to McLean around change of shift, so we can pack up her room and say thank you to both the day and evening staff for all they've done for us.

A memorial is tentatively scheduled for a week from yesterday, Saturday, December 19th at The Universalist Church in West Hartford, Conn with a reception to follow for all. More details to come.

This is hardly the end of the blog. In many ways, our journey is just beginning.

Another Angel

Our mother passed away peacefully at 5:30pm with Monica, Gwennie, and Paul by her side. She was comfortable, embraced, and loved.

Giving Thanks

Our evening was just as Mom would have wanted it. Siblings and friends drifted in, visited with her, and were otherwise planted around the fire place in the lobby eating, drinking, and sharing. The lights in the lobby went off at 11:30pm so we set up camp by firelight. It was kind of perfect.

Mom had a quiet night in comfort and peace. Our amazing Lissa sat bedside while Gwennie and I got some shut eye. Her morphine has been increased today to prevent any respiratory discomfort, and she's become non-responsive. She'll throw a smile here and there when someone she hasn't seen in a while enters the room, but otherwise she's quietly inside of herself, receiving endless gifts of love and prayer.

I've spent a lot of time reading entries from the past, and it is strange to see where we were a year ago. In fact today we were delivered a basket created by the hospice volunteers, that a year ago this weekend, Mom spent preparing and delivering to families herself. I wish losing a mother on no one, especially as prematurely as this, but if it has to happen, I feel confident that we've created the best possible scenario. Today Gwennie and I shared in a ceremony of giving thanks with Lynn, Mom's trusted spiritual counselor. She anointed each part of Mom's body, and gave thanks for how each part has helped support and nurture us in our growth. It was incredibly meaningful to share that time together as mother and daughters.

We're all here, supporting one another, eating incredible food delivered by friends, drinking beers cold off Mom's porch, and taking turns visiting.

Energy is low, need to refuel (cookies + beer), but will update later this afternoon.

Transitioning

Since I last wrote, each day has brought a tremendous amount of change in my mother. She did not want to get up to her chair Tuesday or Wednesday, managed to sit in her chair for about 45 minutes yesterday and 20 today. She's stopped eating, but asks for sips of liquids or a bit of something smooth to "wet her whistle" from time to time. Swallowing is difficult and often invokes these little coughing spells where Mom cannot seem to comfortably clear her throat. For a while now she's had some audible congestion in the back of her throat, and found some relief with nebulizer treatments every few hours.

Confusion has been subtle, but pops up out of nowhere. She and I were talking yesterday afternoon and she said, "I'd like to take a vacation with my brothers and sisters." "That sounds lovely, where do you want to go Mom? Block Island?" "No. Too close. Too boring." Well okay then. We settled on a cruise to Chile. This wasn't even so much confusion as a sign that Mom was slowly transitioning to a place where she is more inside of herself, dreaming of how the next stage will be. These types of conversations about going away, vacations, changes, etc. are often a way in which the dying can express their desire to move on.

Today, she sleeps. Quietly and comfortably, Mom is snoring gently and listening to the Nutcracker on her iPod. Paul, Gwennie, and I had a meeting with her hospice team and we discussed the fact that she is truly starting to make her transition in to the dying process. This afternoon we will access her port and start morphine. Morphine is a miracle drug that serves many purposes, the most commonly known being pain, however morphine is excellent at treating respiratory distress. When people are passing away, they can experience what is known as "air hunger," which is a sort of gasping and rapid breathing when the body shouts to the brain "I need oxygen, breath MORE." Morphine blocks this function, allowing someone to be pain free, and breathe comfortably. If at any point Mom seems at all uncomfortable, she can get a small dose of morphine to relieve the symptoms almost immediately. For anyone who's lost a loved one in hospice, they're probably well aware of what a gift morphine can be.

We are all hanging in there. This isn't easy, but this isn't our mother, and that is so much harder to bear than the prospect of losing her. In the past few days especially, Gwennie and I have been able to make our peace and say our goodbyes. In our counseling with the staff here, they've all instructed us on the five steps of letting go, which are:

1. I love you.

2. Do you love me?

3. I forgive you.

4. Do you forgive me?

5. Thank you.

We've had the conversations at length and on many occasions, and she knows she has our permission to leave whenever she is ready.

In the meantime, I've thrown her schedule book out the window. We're setting up shop in the hospice family room, pulling together snacks, kleenex, family, and friends. The French do nothing quietly. Mom always said to me that when the time comes, she wants to be surrounded by those she loves and those who love her. Done and done.

We were visited by some chorus members from The Cobb School, Montessori where Gwennie and I both attended as children. They entered the hallways singing carols with a holiday arrangement and huge card for Mom. If only I could do justice to the look on the faces of the residents here. An impromptu holiday concert lifted all of our spirits, and even if Mom wasn't able to enjoy it herself, she made this happen by just being who she is.

Now we wait, talk, hold hands, cry, laugh, and eat Beth Holland's cookies (thank you!!!). Mom is at peace. We are at peace. Casey is lying right in the doorway of her room blocking the way: all is as it should be.

Housekeeping: Correspondence

Just a little request- email has gotten VERY difficult for my mother, however the more she continues to get, the more she feels she has to read and respond! Phone is no longer ideal. It is hard for her to hear and her faint voice does not travel well.

If you have a message to send to my mother, snail mail is wonderful and someone here can read the note to her.

McLean

Attn: Elisabeth Talbot

75 Great Pond Road

Simsbury, CT 06070

She also enjoys reading messages on the blog, so please feel free to write notes there as well.

If you do send an email, consider making the font at least 16 point, and email her at talbot07@gmail.com. You can also feel free to send messages to Gwennie or I and we will pass them on promptly. mmtalbot@gmail.com or gwennie.talbot@gmail.com.

Thank you for your understanding!

Little Battles, Big Differences

This last week has been filled with ups and downs. It seems that with each passing day, symptoms get a bit more severe and even simple things more tiresome. For example, Gwennie and I went on a pharmacy mission to grab up various types of reading glasses to see if any would help her eyes focus while reading emails. And of all things, dental floss became an issue. Her teeth feel tighter, and all the floss we had was either too stringy, not stringy enough, too smooth, not smooth enough, you get the picture. After days of trial and error, the little floss sticks were a major home run.

We roll our eyes when Mom starts a sentence with, "you know what I need?" but the truth is there's nothing we'd rather be doing than reading up on dental floss on consumer reports. This is why we're here, and every little effort people make to accommodate Mom's ever changing needs make such a difference in her daily life.

Because our mother is so proactive and such a fighter, our conversations of late have been about what does Mom feel like she has to do versus what she wants to do. For some, the answer might seem very obvious, but for my mother, who is an infinite do-er, it has been hard for her to slow down. We've talked about what enhances her life from here on out, however long that may be, and how does she want to spend the time she has. She continues with her acupuncture, meditation, and massage regularly, which helps control pain, stress, promote circulation, and allow for healing energy to be accessed. There's no question that these tools have helped and will continue to do so.

So the big question: when is enough enough? Imagine you had advanced, metastatic disease, and someone told you they thought if you followed their strict regimen of filtered water, supplements, smoothies, and therapy, you might cure yourself. Would you do it? Would you go to another country and do clinical trials? Would you be able to find peace or rather die fighting? How often are we forced to think about these things?

Ever since the first time cancer entered our family's daily vocabulary, people from all walks of life have offered up suggestions. With Mom's disease being as advanced as it is, she's taken a "well, then I just need to fight it harder" approach. She is truly unbelievable. If most of us were in her shoes, we'd put on our slippers and eat ice cream for every meal.

With all these symptoms, it has really forced my mother marinate in reality. I think she's realized that she can refocus her energy from working towards a physical healing, to just living the life she has in happiness and peace. Just when I think my mother can't amaze me any more, she recently said to me, "I just don't want to stop fighting because I don't want you and Gwennie to think I'm giving up. I want to set a good example." Sniffle...

I just had absorb that for a minute. It seemed CRAZY to me that she would be doing this all for us, the hours of therapy with healers, the timeless research on vitamix blenders and alkaline water filtration systems, the homework. All I could do was reassure her, that the decision to be less proactive is not to welcome death, but to move forward bravely and with grace.

Any book on death and dying will discuss the need to give permission for loved ones to go. But my mother is very much alive and living, and nothing prepares you to look one another in the eyes and have a discussion about giving it everything you've got, or just enjoying your time together.

Since my mother's decision to ease up on her therapies, it has allowed more time for visits with friends and family, which she believes is really where she draws the most quality of life from. We've been able to just sit for hours, and sometimes we're just working on our computers side by side, but we're present, and we're there together. We talk about how cheated she feels; wanting to see Gwennie graduate from college and me get married and become a mother. We acknowledge it is unfair and it sucks, but then we talk about those events in our future, and how Mom imagines those times, what she would say to us, how she would participate, and we know, that when those times come, she will be there and active in spirit.

My mother has only ever wanted to be the miracle patient who walked out of hospice. It has taken her a long time to absorb that no matter how much she does, she may not impact the outcome, but to do less, makes her no less a failure. She is brave, graceful, and is setting an example not to just my sister and myself, but to all of us. Perhaps the miracle won't be her physical healing, but there are other miracles happening every day. My sister and I are together, with our mother, almost every day. My mother has had the opportunity to make amends with people and emotions of her past. She's found a place for spirituality in her life that never existed so strongly before. These are the real miracles, and we are grateful for them.

Gestures of Love

I could dedicate a blog entirely to the kindness bestowed on our family these last few years. But Miss Mollie O'Hara, this post is dedicated to you.

Mollie is the daughter of one of my mother's Talbot Group counselors. When my mother first underwent chemotherapy, Mollie donated her hair to Locks of Love in honor of her. Mind you, she's never met my mother, and was 12, maybe 13 at the time. A few weeks ago, Mollie sent a letter to my mother with two drawings she did herself, citing that "one is for quiet times, and the other for happy times."

Mollie, I hope you don't mind me sharing your drawings and letter. They're too amazing not to. She wrote:

I have never even met you, but I love you because what you have done for yourself, my mom, and your company. You are in my prayers. It takes a lot of courage to do what you have been doing and I am proud to say that I have even an acknowledgement of who you are. I'm sorry I could not come visit you in hospice, but I guess it's not my fault that I'm not 18 yet. The best I could do was make you these pictures and send this letter to you. I hope it has made your day a little brighter, because that was my goal.

Well mission accomplished Mollie. You made not only my mother's day a little brighter, you make every day a LOT brighter because we have your pictures to admire.

This is one young lady who is destined to do incredible things.

And speaking of impressive pieces of creativity, an honorable mention is due for my Aunt Coco. Mom had mentioned that she has a hard time keeping things in reach and organized on her bedside tables, which is nothing new. It has taken a village to come to a halfway decent solution. First it was containers to keep everything gathered in, but those made the table to heavy for Mom to role. Then we tried little upright organizers with little slots, but still too heavy. Of late, we've had success with that rubbery gripper stuff cut to the size of the tables, so at least loose things don't slip off the table easily. But today, ah HA! Look what arrived...

It's a tool belt, covered in words that might come to mind when thinking of Mom. It's tied around the bedside table, and already holding purell, pens, remotes, kleenex, you name it.

A+ for creativity.

Recommended Readings

Thank you to everyone! You were spot on. The following three books were assigned to me when I took an elective in nursing school called "Care at the End of Life." I've picked them up a few times since because at each point in my life, they've meant something different. I would highly suggest any of the following:

On Death and Dying, by Elisabeth Kubler-Ross, M.D.

Final Gifts, by Maggie Callanan and Patricia Kelley

Dying Well, by Ira Byock, M. D.

Day by Day

Since Thanksgiving, we've noticed a few changes in Mom. They're mostly neurologically related, such as her left eye looks slightly weaker than the right, her double vision has returned, she has to lift her right arm with her left in order to extend that arm fully, and her right foot seems to move involuntarily while she is in bed. Her pain symptoms have morphed a bit as well, but remain relatively well controlled having increased her pain patch and added ibuprofen around the clock. The swelling in her legs is not concerning, and certainly improves when she spends less time sitting up in the chair. It is a lot of little things that we seem to chase, but put them all together, and the big picture reveals that overall things may be heading in a different direction.

It's hard to believe that Mom has been at McLean for a month now. She built up a lot of strength and energy over that month, and spent a lot of that energy and time crossing things off her list while she was feeling well. Although a bit less energetic this past week, she is still plugging away on a few projects that mean a lot to her, and despite some of her staff recommending she slow down a bit, she is really happy to be accomplishing so much.

And so we come back to balance, because despite the fact that we see physiologic evidence of change which could be considered decline, Mom is purely not ready to go there. Nor should she be. I've had the opportunity to sit in on a few discussions with her nurse, counselor, and doctor over the past two days, and despite these changes, she's made it clear she wants to continue living her life as best she can. We acknowledge, but we don't dwell. We breathe it in, then we move on.

This hasn't been as easy for me. I'll admit that at times I get fixated on my mother's physical health. I analyze and I worry. I get nervous that her continuing to push, fight, and believe means that she is in denial of reality. Sure enough though, mother knows best. She isn't in denial of the changes that are happening, she is just choosing not to be defeated.

We did an exercise with her counselor, where she asked Mom, "if tomorrow were your last day on earth, how would you want to spend it," and Mom said, "with my girls." Of course "tomorrow" was not her last day, because "tomorrow" is today, but you get the point. She is trying to live as best she can, without dwelling, and we are trying to soak up as much quality time with our mother as we can, without dwelling. Welcome balance.

I don't know what I would do without a hospice team to lean on. They've not only escorted my mother through this process, but my family as well. We're not the first to be winding down this path, and they're understanding and knowledge keep us empowered.

Thank you Beth H. for pointing out the excellent article in the New York Times yesterday about hospice. And if you're a 60 Minutes fan, there was a fascinating segment on about the cost of care in terminally ill patients (it is also very pro-hospice).

These concepts and ideas are hard to wrap one's head around. I remember right before my mother's mother passed away several years ago, and many of us felt unsure of how to act or what to say to my grandmother. Mom on the other hand, was a natural. She never shied away from the topic of death, dying, wishes, amends, and tears. She passed around a book to all of us that I would highly suggest everyone read, regardless of whether you've lost or are losing someone in your life. I'll give a hug the aunt or uncle who names the title first because I'm having a serious brain fart at the moment.

I'm heading back to McLean now, with clean laundry and lots of obnoxious holiday decorations for Mom's room, which is looking beautiful by the way. See for yourself...

Mom's gallery continues to grow!

And her desk is filled with books, pictures, and cards from all of you.

Giving Thanks

I could spend all night listing what I am thankful for, but this picture pretty much sums it up (or roughly one fifth of it up): FAMILY.

The above is from our second celebration of the day at my aunt and uncle's house in Canton, where Mom housed her second full plate of Thanksgiving dinner. Mom, Dad, Gwennie and myself had our first plate of turkey delight at McLean, and I was pretty sure that Mom would be too tired to venture out, but I was quickly corrected.

After a few days of feeling a bit under the weather, it was a vision to see Mom energetic and hungry. She'd been dealing with some new pain in her lower back and legs, which was difficult to treat without making her feel too groggy. She's also experienced some nausea and increased fatigue, some of which may be a product of over-working herself, or some neurological changes, so her team is watching her closely and working hard to ensure her symptoms are well managed.

Today was a wonderful day. One of the best Thanksgivings in a long time. The last two we've been a week before or a week after major surgery, so to just relax and enjoy time with family was a treat. My food coma keeps me from mustering up further creativity, but from our family to yours, we hope you had a wonderful holiday!

Best of Intentions

Mom continues to improve with each day. We're now almost three weeks out from when she would have had another cycle of chemotherapy, so her body is clearly using this time to rebuild and replenish. Although we're not closely on top of what her cancer is doing, the plan of action continues to be day by day, capitalizing on what energy she has and allowing for rest when she wants.

Finding balance seems to be something I discuss a lot with regards to my mother, and even myself at times, but there is new meaning behind the concept today and I'm asking for you all to help.

When someone we love is sick, we march in to action, with food, cards, prayer, love, advice, answers, music, research, theories, etc. Each of us react in different ways. Mom has been benefiting from all the kindness and generosity of her friends and family for so long now, I fully believe it is why she is flourishing now.

Going forward, I'd like to make a suggestion that we all seriously consider, myself included! My mother is feeling well, she is conducting business, managing her schedule, taking charge of her life. She does not need anyone else telling her what to do! Because she is in a long-term care facility instead of her own home, she is realizing how easily and frequently people "pop in," but end up staying for 20 minutes! Might not seem like a huge deal to you or I, because we can retreat to our own home, close the door, and not let anyone in. But at McLean, she often feels that people don't respect her space as much because they're accustomed to dealing with a less energetic/aware/productive clientele. Mom has had to really say to the staff, "if I need you, I will call you, otherwise, please respect my quiet time." And I think the rest of us need to do the same.

What she's expressed is that she really enjoys scheduled visits, one a day. And if when you visit, you'd like to bring something, how about lunch? She is so enjoying nutritious, enriching, delicious meals. These days she is less inclined towards sweet treats, and is looking to fill her body with all the wholesome nourishment she can get. It doesn't even need to be a lot! She shares a communal refrigerator with other residents and when huge Tupperware dishes roll in, Gwennie and I are full throttle-fridge managers. Her room is small and cozy, so I hope everyone will understand that right now, all we need you to bring is yourselves, a smile, maybe a nutritious treat, and a listening ear.

This is a hard post to write, because I too am guilty of calling my mother and talking her ear off for a half hour, saying "you should be taking it easier, spend less time doing things, relax more, tell people to stop coming by, blah blah blah blah blah." What have I just done? Taken up a half hour of her energy to satisfy my inner-control freak daughter because I love her and just want to help.

Moral of the story? Respect her space and time just like you would anyone else's. Unless you're absolutely sure it will cure cancer, please try to keep elixirs, healers, meditations, teas, for your own enjoyment. Food is always good. Small portions, delicious, and nutritious. Above and beyond all, thank you for the outpouring of love, and know that this is purely my attempt to rein in the incredible gestures of one outstanding community.

Farewell Old Friend

No no, not Mom, she's still kicking. More than you and I combined actually, but enough about her.

This post is dedicated to the passing of our trusty steed, the Pathfinder. Many of you have borrowed it to move children to college, or to transport a dog to the vet. Maybe you were there to pick Gwennie or I up when it died on the side of the road (multiple times). At any rate, it's been there for us, delivering us to boarding school, traveling to friends both near and far. Mom and I visited 10 colleges in 5 days in that baby. There's a strong history of taco bell drive throughs embedded in those seats.

I recently re-inherited the 1997 boat/car from my sister, and when I went to get the oil changed, was told to "save my money." 'Nuff said. It is being donated next week to be used for parts and put to pasture. Sigh.

This week I got a new car, but I'm not the only one taking to the road.

WATCH OUT! Mom has a new motorized wheelchair. I kid you not. She said she feels like she's "been given a new car too." Gwennie took video footage of the maiden voyage, so stay tuned for that.

Frankly, having her confined to a non-motorized wheelchair may have been a smarter choice. At least then we could physically rein her in (mentally, forget it). Now she's all over the place. Today she rented out the art room to hold a three hour business meeting. She is no joke. She exhausts me. I need to take a nap after visiting my mother in hospice. What is wrong with this picture?

Nothing. Absolutely nothing. She is happy, eating, flourishing, loving life sans chemotherapy as she should be.

Extraordinary, Every Day.

For those who are not familiar with my mother's business, the title of this post is not only her company's motto, but the heart, soul, and nourishment of what I have come to see in my mother, especially of late.

She raised me saying "garbage in, garbage out," which was generally in reference to my choice to watch Beverly Hills 90210 instead of Reading Rainbow. However this is applicable to much more than one's choices in television viewing, specifically the company with which we surround ourselves.

I've run out of words to express the kindness bestowed on my mother, but truly believe that it is nothing short of a reflection of who she is as a human being. A perpetual people pleaser, almost to a fault, she rarely acts without thinking of how it will impact those around her. Even today, she pressed the call light to ask for help, and prefaced by saying, "I don't want to inconvenience you, but...."

You have all stepped up to bat in so many ways, but two stories in particular I had to share:

Not too long ago, Mom's good friend Naomi Lerner gifted a matching earring and necklace set that she not only custom made for my mother, but named after her as well!

"Liz It Is" has been a huge success. It has been selling like hot cakes, and we recently learned there was a bidding war on the last available set at a fundraiser.

When Mom wears it she glows. For someone who is known for never leaving the house without her Mulberry lip gloss and a scarf (she single-handily started the craze), she is now most often without make-up, sporting a pastel terrycloth head cap. It is so much more than a tribute, it gives her a piece of familiarity back, and that is an indescribable gift.

I was recently sent a song called "Keep Me In You Heart," by Warren Zevon, who wrote his album The Wind shortly after being diagnosed with cancer. The sender was my childhood best friend's older brother.

Mind you, this is a boy (okay fine, now man) who I used to tell on regularly. He made fun of me for crying, inflicted many bruises on me, and taught me an extensive library of profanities at an impressively young age. None of which matters, less to say how in this experience, where emotions peel off like layers, people come in and our of our lives in the most surprising and touching ways. He put it better than I ever could:

"Whether abrupt or protracted, when a tragedy unfolds itself into a life, as it has clearly has in your case, I imagine that all of the people involved hear a lot of wonderful things from a lot of wonderful people and a lot of strange things from a lot of strange people and a lot of things in between. With all of the tasks immediately at hand, maybe it’s hard to separate all of the wonderful sentiments and kind words from the crazy rambling and stammering people seem to do in these cases, the true friends from the clingy weirdos who show up and maybe make only themselves feel a little happier or more comfortable for a moment."

This part of life is lived differently by everyone. It is awkward and scary. I don't even know what I am saying or doing half of the time. So to all of you, wonderful people and clingy weirdos alike, the roll you play in this, through cards, comments, prayer, food, thought, art, or song, is essential in our process. We are so lucky to have you.

People Please, One at a Time

There should be a red carpet outside my mother's room. She needs a social secretary. This is insanity. The woman is practically booked through Thanksgiving.

Mom has been at McLean for just 10 days now, and although it has not been without a hiccup here and there, her strength improves daily, her appetite is intimidating, and she is even conducting and business meetings! The woman is out of control.

It has taken a while to adjust to her new surroundings, especially learning the system, but the staff is very eager to get to know Mom as well and each day is an improvement.

The greatest of all, is perhaps, the bedpan situation. If this is TMI (too much information), you're reading the wrong blog. Since Mom's last hospitalization, the ordeal of getting to and from the commode can be a painful hassle, so it has been bedpan city. Go ahead and grab plastic mixing bowl and sit on it for 5 minutes 5 times a day and see how good your butt feels. Exactly.

Mom's good friend Tom V. got wind of this situation and showed up the next day with a variety of bedpans from which to choose. She went with a lovely wide-brimmed model. It never ceases to amaze us to what lengths friends and family will go to in order to make Mom's life just a little bit better.

As for the traffic, Mom has taken control by scheduling one social visit a day. So if you have emailed or called and not heard back, fret not, you will. One a day seems to be the magic number, because it allows to enjoy her time with people but not spread herself too thin. Believe it or not, I even had to pencil myself in on Sunday. True story.

Extreme Room Makeover

Some pictures of Mom's room before, and some of our progress thus far...

Some of Mom's wonderful friends got together and sent her a beautiful collection of Mums for her patio. Also included is picture of her view from her bedroom window, and Miss Gwennie Gwen sitting below the start of our little in-house gallery.

Liver and Onions

You know you're eating in a nursing home dining room when one of the entrees offered is liver and onions. My aunt and uncle came to visit today, and we decided to try lunch in the dining room for the first time. It is a great system actually, you just make a reservation for however many guests are joining you, and voila! It was a nice change of pace to Mom's normal daily routine, and the staff was lovely. The food is nothing to write home about, but that's coming from very intense foodies.

We had one major incident today that really took it out of my mother, and I think Gwennie and I as well. Since Mom's strength is improving little by little, we pushed her to take a few steps with the walker between getting out of bed to the wheelchair. She did really well until it came to sitting down. Instead of waiting for Gwennie and I to lower her down in the chair slowly, she slammed straight down on the chair which sent shooting pain through her entire spine. It was a few minutes of severe agony and pure fear for my mother. Initially she was just petrified that she'd done major damage, but she took some deep breaths, and the nurse got her pain medication immediately. She required some additional pain mediation through the day, but seemed to be more comfortable by mid afternoon. She has limited control due to muscle deconditioning, which combined with some disease they've seen in her bones on MRI's, her bones are quite fragile. It is no wonder she was in such severe pain.

Our greatest fear is that she get too scared to move and doesn't push herself to walk and transfer from the bed to the chair often, but I worked hard to assure her that wasn't the way it was supposed to happen! It is essential that we keep her moving to promote good circulation and healing of the wounds on her bottom and her right leg.

When she sits up too long, the edema in her lower extremities gets so severe that it's pitting, meaning if you pressed your finger on her leg, an imprint remains for a few seconds. This occurs when fluid shifts out of the cells and collects in the tissue. It can be a result of many different things, but we're not as concerned as to why it is happening as to how we can prevent complications from edema. For example, edema can inhibit circulation, which prevents efficient wound healing. So for a few hours a day, we try to keep her legs elevated, while also balancing time with her sitting up in her chair to take the pressure off her back.

It always comes back to finding the balance...

Emotionally, Mom cycles up and down from minute to minute. For years she's been relying on physicians and nurses to make recommendations and tell her what to do to fight for her life, and now there is a "do what you want to do" attitude which has been hard for her to adjust to. It is easily misunderstood as people giving up on her, as opposed to just wanting her to be happy. Like most people, she wants to remain in as much control of her life as she can, and in talking with her team, they were really receptive to this. They understand that Mom appreciates recommendations and suggestions on how to promote her health, so again, we're back to finding the balance.

What is bringing a smile to her face is all the mail she's gotten since I posted her address to the blog! Wow- you all work fast.

Mom visiting with Marilyn R. and Gwennie

by the fireplace.

Uncle Bud and Aunt Missy visiting for lunch in the dining room.

Speaking of visitors, Mom is loving them, but requests that people don't just drop by. Not for her, but more out of respect for your time! She often has scheduled appointments during her day, so if you'd like to visit, it is best to send her an email or give her or I a call to set something up. That way you don't risk showing up while she's busy!

Miss Party Pants

It is no surprise that Mom's room is flooded with people at all hours of the day. Certainly, in comparison to her neighbors who are mostly greater than age 90 and are more than just a little confused, she is a welcome change from the traditional pattern of residents. In just a few days, she's formed solid relationships with the nurses and CNA (certified nursing assistants). It hasn't all been completely without difficulty though. Adjusting to a new environment and learning the system has been frustrating at times.

At St. Francis, her nurse would have 4 patients max, but at McLean, there is one nurse assigned to a 20 bed unit. But there are between 8 and 10 CNA's because the bulk of the work to be done with these residents can be done by a CNA. The nurses oversee care, pass medications, change bandages, etc., but the CNA's are really at the heart and soul of the hands-on care. I remember my days as a CNA, and the work is not easy: lots of work, very little glory, but the CNA's we've encountered thus far have been wonderful and patient with my mother. I've been particularly impressed at how willing they are to take extra time to "learn" her and accommodate her needs rather than just do things they way they might with everyone else.

The hospice team who oversees her entire plan of care continues to impress us left and right. We had one major snafu over the weekend, where Mom was up to her chair in the middle of the room, needed to get back to bed, and realized her call light was no where in reach. Fortunately, she had her cell phone with her, was able to call me, and I was able to call the nurse's desk and alert them that she needed help. Even though we were able to get her the help she needed, this was obviously very concerning to all of us. The response by the team has been appropriate in that they took it to the director of nursing and were incredibly apologetic, but kinks in the system remain. Fortunately the team is working on making this the best possible experience for her.

On our end, having Mom in a safe environment with a staff to call on at all times has really puts our mind at ease. I feel my stomach slowly beginning to relax, and today I was actually able to sit with Mom while she had dinner, and talk for almost two hours. Just talk. About nothing in particular. It was amazing. I can't remember the last time I've been able to just be with her, without running through a check list in the back of my brain. Don't get me wrong, I spent the first 5 hours of our visit hanging paintings and making lists for her, but we're getting there...

I've found this process is about balance. Taking care of ourselves so we can take care of Mom.

"I'm Here to get High Till the Day I Die"

Those exact words came out of Mom's mouth. I kid you not.

You'd think they'd be giving her medicinal marijuana the way she's embracing this change, but no, what brought her the most relief yesterday was some good 'ole Mylanta. All the medications in the world couldn't get rid of the heartburn, till she put the chalky goodness to her lips.

Mom arrived to McLean mid afternoon yesterday with Gwennie riding shotgun in the ambulance (and yes, she got to run the siren). The second she walked through the door, her spiritual counselor Lynn T. was waiting with a smiling face. How wonderful it was for her to see someone familiar! She's been working with Lynn T. just a bit independently, but will continue to do so on a regular basis at McLean.

She is on a regular long-term nursing unit, mixed in with all sorts of other patients. Most of them elderly, a good number of them slightly confused, a few trying to make a break for it: all very amusing really. Her care is completely overseen by the hospice team. We met with the hospice clinical coordinator (Karen), and Mom's go-to case manager (Jill), her social worker (Gretta), the head of hospice volunteer services (Lori), the head of the hospice program (Deb), and that's only the beginning. You thought swiping the cancer card was effective? The hospice card gets you platinum access to all things wonderful.

Right off the bat, everyone has completely taken us in and made sure our every wish, concern, need, fear, hope, and question has been addressed. Mom's bedside nurse Carol (this woman has probably worked at McLean since it opened 100 years ago, and will work there till she's ready to be a resident) was giving her some pain medicine before physical therapy, and Mom said, "are you sure you're not slipping me some uppers? Because I am feeling way too good."

All this is really, is quality of life. She's getting it back and then some. Her appetite is improved, today she was in the lobby by the fire with a cup of tea, tomorrow she's getting a manicure. We even ditched the little TV they provided us with for a 26" flat screen with a DVD player that maintenance is helping us mount Monday. Life is good.

The philosophy in how the hospice team manages her care is very family-centered. We've got magic numbers to call any time, day or night, no matter what we need for our Mom or ourselves. Despite how much we grappled with whether to send her to McLean or not, to see her now I know we made the right decision.

I'll post some before and after pictures of her extreme-hospice-room-makeover, but at the moment I have to get back to packing. This is me returning the favor for all those years of moving me in and out of boarding school and college.

If you want to write, her address is:

Elisabeth G. Talbot

c/o McLean

Unit 4

75 Great Pond Road

Simsbury, CT 06070

Calling her cell phone is best (as opposed to the room phone), and visitors are more than welcome unless you have or have been exposed to someone sick. She also has her computer, so email away. As she gets a bit more energy, she enjoys keeping in touch with the outside world.

And We're Off!

More to come later, but with Mom's symptoms being well stabilized, and her having spoken at length with her entire interdisciplinary teams, she's very secure and confident that McLean is the right choice for her. And they're transferring her at NOON TODAY!

YIKES!

It all happens so fast, but she's excited for a change of pace, a room to decorate, a new environment to explore, and a wonderful staff to meet.

Today will be a lot of getting settled and starting to make her room feel her own, and hopefully in the next few days as she settles in we'll have a sense if this is a good fit for her. Since she is being admitted as a hospice patient, there is a plethora of resources that will be made available for her and all the family so that both physical and emotional needs are being met.

Will report after our move via ambulance. I hope they'll let me turn on the siren.

Chicken Crack for the Soul

I'm thinking it should be the title of my memoirs? Thoughts?

Actually no- that is what we call Carol K's chicken dish with onions, capers, and kalmata olives. It is insane, and we've received it a few times (by request) as one of our Helping Hands dishes and we love it! Just in time too, because Mom is finally able to eat without too much discomfort. Carol, if it isn't a secret, you have to send me the recipe to post to the blog.

Yesterday was long, and today we are processing. Mom woke up in a great mood. She was able to have a long conversation with Gwennie and I, and then Paul, after she'd rested and absorbed our family meeting. She is accepting, graceful, positive, and hopeful. She seems to be leaning more and more towards McLean for a variety of reasons, and everyone has said, what you want is what you get. Period. Boom. Done. (Aunt Missy, that was for you.)

But surprise!!! Guess who's baaaack! C. Diff. I kid you not. You may remember Mom's run in with c. diff in January 2008 after her kidney removal. It was miserable, and we're really hoping and have every reason to believe this time will be very different. Clostridium difficile, or "c. diff" is a bacteria that is part of the normal flora in our gut that helps with all sorts digestive function. Because Mom has been receiving very heavy duty antibiotics to protect her body from infection, these antibiotics have suppressed the body's ability to keep these bacteria in check, and c. diff has grown out of control. The side effects are diarrhea, incontinence, and colitis (swelling of the colon). It is uncomfortable, inconvenient, and a pain in the ass. Literally.

It has to be treated with 2 weeks of (what else) a heavy duty antibiotic called flagyl. Her emotional reaction to hearing this news was significant, because she associates having c. diff with all awful post-operative period years ago, but her team has assured her, that this is almost an expected complication of antibiotic therapy, and will not last forever.

This buys her at least another few days in the hospital, and if all goes according to plan, we're looking at a Thursday or Friday discharge. "If all goes according to plan..." I crack myself up.

Because her diet has been so poor, and her circulation impaired from lack of mobility, we're seeing skin breakdown in places that are virtually impossible to prevent friction. Not to over share, but frequent diarrhea and spending most of your time on one's buttocks is a lethal combination. I say this not to be graphic, but only to express the laundry list that must be attended to when caring for people. Her nursing staff has been astounding in meeting both her emotional and physical needs, but even in the hospital here, we struggle with what we are taught are preventable things. Every day the severity of her needs is made crystal clear. Ideally, she should be repositioned every hour, and spending only a third of the time on your buttocks, which means being turned side to side. Doesn't seem like a big deal, but it is. People are not meant to spend a long time in acute care hospitals if they don't need to, so hopefully when she is discharged we'll be able to tackle some of these issues more closely.

Now she is resting. She is loving St. Francis emails, cards, and letters. News from the outside world is a welcome distraction!

Thank you for all the supportive and thoughtful comments. I read the blog to her daily and share all the comments, and nothing could make her happier.

Family Meeting Minutes

This afternoon we were fortunate to have a family meeting coordinated by a woman who works as a social worker for patients receiving palliative care services (stand-by for definition). It included Mom, Paul, Gwennie, the social worker, the nurse case manager, and Dr. Donadio.

At this stage, we've determined that the systemic chemotherapy is doing more harm that it is good. It was started initially to keep the systemic cancer (small tumors that have emerged here and there in her lymph system) at bay and prolong her life. We knew very well that it would not likely cure the cancer. The systemic chemotherapy is no longer on the menu for my mother, thank goodness. Hopefully no more mouth sores, sore throats, low blood counts, and all that comes with it.

Our focus is shifting towards "comfort-based care," with the objective that if we can not cure the cancer, at least we can keep Mom as comfortable as possible so she can enjoy her life.

There are two options: palliative and hospice care. Many think they are all-encompassing, but there are subtle yet distinguishable differences.

Palliative care means that the focus is still the person's comfort, however some interventions can still occur if the patient chooses. For example, in Mom's case, if she wanted to continue receiving intrathecal chemotherapy in her Ommaya port, or be able to be hospitalized for stabilization, etc., she would be considered palliative.

Hospice is a service that is offered to keep patients out of the hospital, either at home or a skilled-nursing facility, and to manage their symptoms in an effort to keep them comfortable. No interventions are done to prolong their life, such as feeding tubes, breathing machines, etc. If it does not enhance comfort, it is not done.

None of these decisions come lightly. Mom's positive attitude and strength thus far has been astounding. There are no words to describe her perseverance. We all want her to be the miracle, no one more than herself, but her cancer has a life of its own, and at what length does she want to go to fight what we're being told is incurable?

The last week has been peppered with conversations and tears. My mother fears nothing more than feeling she's failed, or giving us the impression she's given up. She always goes back to Gwennie, who being just 20 years old, is being cheated out of important years with her mother. But we do our best to remind her that we're not losing a mother, we're gaining the honor to share in her final days of life. She reminds us that if a miracle will occur, it will happen with her girls at her bedside, and that's what she'll get, miracle or not.

Her care is complex, and along with the decision of whether to continue the intrathecal chemotherapy or not, we're grappling with whether she will receive the best care at a skilled-nursing facility or at home. I know at first glance it seems entirely obvious. Believe me, I am in the biz. However, in the team meeting today we were able to seriously dissect the pros and cons of both going home or not, and the answer is not so black and white.

What muddies the water is that we happen to have a world-class skilled-nursing facility in the neighboring town, McLean. They've been providing us with visits at the house since September and we've been thrilled with their professionalism and attention to detail. If we didn't have a top-notch facility at our finger tips, bringing her home would be a no-brainer.

If Mom goes home, she'll receive visits from McLean as she did before, but now that her needs are so significant, we'll be responsible for hiring around the clock care to ensure her safety. By safety, I mean, both physical and medical. She is already experiencing some skin break down, and her medication list is intimidatingly long. Having people in the house who are impeccably qualified is a must (enter ACDC daughter/nurse/now hiring manager). She gains the opportunity to stay in her home that she knows and loves. To go to McLean, she has physicians, nurses, and nurse's aids at her finger tips, not to mention a private room, with an attached handicap bathroom, a small veranda which looks out on to the woods, etc. But it's not home. And as much as they said, "move in, bring art work, your dog, your friends, your music, etc." it is still not home.

So we have to flesh out a few things. Where would Mom feel safest? How do we ensure she gets the best care? Who will manager her needs best? And even though Mom is the priority, what is best for her family?

We shall see. She's not being pushed out the door of the hospital. Over the weekend she started having diarrhea, nausea, vomiting, and painfully annoying heartburn. We won't be heading out until her symptoms are beautifully controlled and we have a safe, thorough plan in place.

Now the room is quiet, free of visitors and personnel. She's rubbing her temples with her headphones on, which signals to me that she's half way through her meditation. Nothing stops this woman from doing what she loves, not even cancer. In the meantime, I'm going to have faith that Mom will make decisions for her future based on what she feels is best for herself, and will in turn, be best for the rest of us.

Quick update

So far, today has been a slightly less eventful day than the past few, but eventful nonetheless. I mean we are talking about my mother here.

Dr. Donadio (who just happens to be the oncologist on call for the weekend) came in at 9 am this morning with the great news that Mom's counts are back up! Her red blood cells and white blood cells both have finally made a come back to the point where Mom is no longer neutropenic. Her platelets are still low, which may explain some bruises creeping up in weird places, so she received one more platelet transfusion this morning.

Her other symptoms are all getting under control as well. Her cold sores and thrush are going away, which means she's eating more and more of every meal she gets. She's gaining weight, she's sleeping well, and "BMing" (bowel movement-ing) normally. Unfortunately, she does get heartburn after every time she eats, but it at least is not stopping her and she considers it something she can live with. However, she does get sudden bouts of back pain that are so bad it has her in tears. We're not exactly sure why she's getting that, but it's probably due to a combination of the Neulasta shot she got last week and being in the same position in bed all the time.

They're predicting that she's going to be discharged early next week, as long as the rest of the weekend goes smoothly.

"I'm A Little ACDC."

You can't make this stuff up.

When Dr. Donadio told us today that Mom would likely be kept through the weekend for monitoring and infection control, Mom said, "it's okay, we're a little ACDC about infection."

If you're slow on the uptake, ACDC is an 80's metal band. She meant OCD: obsessive compulsive disorder.

Today has been quieter, mostly because Mom sleeps through everything. I'm watching her doze with a spoonful of pudding in her hand right now actually. Although her fatigue is extreme, her pain is much improved today, and without too many narcotics. Her mouth sores appear to be improving, but her cognition is a little spotty. Chemo brain is in full effect.

The MRI and CT scan done yesterday were not massively impressive. As Dr. Donadio put it, there were a few little blebbs here and there, but nothing wildly concerning, and nothing that could be contributing to her bone pain. For all intensive purposes, the masses we've been tracking are stable. The treatment however, is clearly taking its toll.

Here in lies the massive debate which we knew we'd eventually come to: this cancer is incurable according to the medical world, and the objective of these chemotherapies is to increase quality of life. We're now teetering on the fence of increasing quality of life versus doing more harm than it's worth. Our objective during this admission is to control her symptoms, watch her blood counts (she needed another platelet infusion today, for example), and prevent infection. When she is safe to go home and she has more energy and less chemo brain, we'll have to weigh the risks and benefits of treatments going forward.

Everyone has feelings and thoughts surrounding this I'm sure, but ultimately, it is Mom's decision. I know she gets the most out of her days when she is able to do mediation, acupuncture, massage, deep breathing, and especially enjoy all the delicious food being delivered to us. When she is ready, we'll start focusing on just the things that make her feel good, not this crazy chemo business.

Her moment to moment needs have certainly changed as well. Since she is no longer able to even readjust in bed, the level of care she requires when her energy is low has become significant. In speaking with her care team today, and acknowledging that she'd like to stay home as much as possible, we've started researching some options for help in the house. As wonderful as Gwennie, Paul, and the rest of our friends and family have been, there is a lot of training that goes in to caring for someone this needy that can not be taught overnight. For anyone who has been there, caring for someone is emotionally and physically exhausting. It is important for everyone to feel capable and safe in what their role is, and not to compromise themselves or their loved one. As hard as it is to step back sometimes, ultimately what is best for Mom is to have good care, and by releasing her care to professionals, it can free up her family to be just that: family. This way, all of her friends and family can focus on doing the things they enjoy with my mom instead of feeling responsible for all aspects of her care (except for me, cause I'm ACDC).

Things are changing, but Mom is happy. She is not defeated, she is realistic. She's spent the last two months (lovingly) barking orders at Gwennie and I to clean out closets, organize papers, transfer this, box up that, mail those, etc. Now is the fun part. She takes a lot of joy and comfort in meeting with friends one on one, reinventing her thoughts on spirituality, listening to music, and discussing her childhood memories.

Still no visitors as her white blood cell count is below what is desirable, and talking on the phone strains her already weak voice. She's LOVED the St. Francis emails though. Out of all the pictures you can choose to be on your email, the fluffy cat wearing strands of pearls has won, hands down.