"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.

One More Request...

Rest for Mom is rare. Please no phone calls, and absolutely no visitors. The risk of infection is way too high, and as much as she'd love to see your shining face, she doesn't need any germs.

Which reminds me, have you gotten your flu shot yet?

If you want to say hello, her favorite thing to do is read comments on the blog, or send an email through the St. Francis system.

Thank you for understanding!

Yours truly, Nurse Ratchet