Little That is Noble

My mother's biggest fear was going old and senile, of losing her marbles before her body shut down. She would, from time to time, remark that she wished there was a bottle of that "special Tylenol" in the top of the cupboard, referring to the Tylenol cynaide scandal of the early '80s, just in case she started to slide into dementia. Those jokes were kind of half jokes / half wistful thinking living in a state where any sort of assisted suicide would be seen as punishable to the greatest extent of the law.

My mother, brave and strong and tough as nails, weathered some of the greatest heartaches life had to dole out, the final coup being a diagnosis of stage IV lung cancer one week shy of her retirement. She dug in, for us, and tried to stave off the cancer that would inevitably kill her. She tried, beyond probably her own desires, to stick around as long as possible.

And the end was a shitty one. The entire process, honestly, was a shitty one of doctor's appointments and side effects and loss and not knowing, really, when to say "when". She did it for us, true to her form of putting her own desires last, loving the people who needed the comfort of a few more months or days more than her own need for peace.

We talked through the "special Tylenol" options, downloading Final Exit only to discover that the options were to put her physician friends in professional peril or die of suffocation, her worst nightmare. I remember sitting on the ottoman of the big chair where she spent most of her time, walking through the options with my sisters, her shaking her head at each one. That was about the time when we decided hospice was the best option and things went downhill on icy skates.

In my mind, there is little that is noble about the way we treat the dying in this country. There is little noble about asking someone to suffer a horrible end or to be drugged nearly unconscious until her/his body fails. There is always the question of when to say goodbye, because there is always false hope. There is always the question of what to do, how to be, what to say, who to involve. I brought David and Ava in to say goodbye to my mother in the final days of her life. Ava clung to her father's neck crying "That's not my grandma! That's not my grandma!" while David buried his head in my waist. I don't know that I can forgive myself for that failure as a parent, for giving them that fearful last look at someone who loved them so deeply, who was hilarious and full of energy and love all of their lives. Instead, my mother was a shadow of herself, incoherent and frightening. 

What a beautiful thing it would have been to have had her pass on her own terms, our small family with her, her having said her goodbyes in her own way. She could have kissed and hugged all of her grandchildren, she could have had a final drink with her sons in law, she could have given each of us girls a special kiss on the cheek and held our hands as she did in quiet moments. Yes, that night would have been one of the hardest in all of our lives, but she would have gone out strong. She would have been herself. For those of you who knew my mom, you know what I am talking about. On her own terms, just like she lived her life.

I watched this video from this beautiful young woman who is now living in Oregon so she can end her life with dignity, vibrant and true. People faced with a terminal illness want and deserve a choice in the matter of how they live out their final days. I can't say this much better than it's described in the video, but I honor her choice as it may some day be my own. 

It's the not knowing

It was deja vue all over again. My oncologist sitting in front of me with a really perplexed look on his face. "Your counts were low two weeks ago and so we didn't do chemo, figuring they'd rebound but they haven't. In fact, they are lower than last week, down to .5. Your liver enzymes are also elevated again, which is unusual. Honestly, I really don't know why this is happening."

Bwwwwwwwwwwwwwwwwww. I blew out a deep, long breath and waited for him to continue, not loving that this was the second time my too-honest-for-his-own-good oncologist had told me that my situation was "unique" and "unusual" for his 30+ years on the job. They'd been huddling outside the office for a good 20 minutes, waiting for the input from my hematologist, and I was nervous about where this was going. [Little did she know, the worst was yet to come...]

"So, we are going to need to do a bone marrow biopsy to see what is going on. We'll schedule that for tomorrow and get this all figured out."

A BONE MARROW BIOPSY? Are you fucking kidding me?

I got teary, again, and sat there for a minute trying to collect myself and not go into full panic mode.

[Bone marrow biopsy means they are looking for something like leukemia, which can occur as a result of chemo. Shit, shit, shit! What if I have leukemia? What the hell am I going to do? There is NO WAY I can handle anything else, especially not leukemia. I am done. Forget it, I am quitting chemo. What does the taxol get me? Probably nothing. Shit, what if I have LEUKEMIA? Shit, shit, shit!]

And then got up and left, feeling incredibly numb.

Nick had gone up north with the kids for a week, my sister wasn't coming in until evening the next day and that put her in Ann Arbor after the biopsy. I had to face the procedure without Nick, and ask my dear friend Jenn to put off her family vacation to take me. And what if something was really wrong? What then?

So much of what wears you down in being ill, dealing with doctors, dealing with health issues is the not knowing. Not knowing how things will turn out, not knowing what the treatment will be like or how your body will handle it, not knowing what is happening when things go very, very wrong. The dreaded words are "X is happening and we don't know why." I think of my friend Ashley's stroke and my friend of a friend Maria's TBI that is causing new problems. I think of my friend Beth who deserves to get her zing back and my dear friend Anne in London who has just started on the path I began back in March. So fragile are these experiences where so much hangs on so many factors. It's easy to get frustrated at the doctor's not knowing or be angry with your body, but it's really just the reality of not knowing that leaves you paralyzed.

My sister and I also ventured into the conversation about what my longer term stats look like. I've never gone there, too scared to start googling about and the medical community is reluctant to raise those issues with patients (thank goodness) unless prompted by the patient's need to know. But Lisa had done her homework and so we started talking about what this means going forward. Basically, if I make it 5 years without a new cancer, I am in great shape. If not, not so much. Triple negative cancer has a higher recurrence spike, but if you can get through those five years, your future looks bright. It's a more aggressive cancer but responds really well to chemo. Five years out and you may live to be a hundred. It's the not knowing that eats you up.

Nick and the kids came back from camp on Friday night while I was still waiting for my tests to return and, in some ways, thinking about the five year frame gave me a new lens on things. We'd be talking about college and it would hit me that maybe I won't be here to see David go to college or Ava graduate from highschool and I would be awash in tears. I have never allowed myself to go there because I am convinced that everything is going to be fine. It is. But it makes me think a lot about what the next five years looks like for me, the way I want to live my life, the choices I make about work, where I live, who I am friends with, how I treat my body. Sometimes it's the not knowing that spurs you forward.

After a weekend of held breath, my bone marrow tests showed no signs of leukemia (which my oncologist said would have been really unusual (that word again!) at this stage of the game). My Absolute Neutraphil Count went through the roof thanks to the neupagin and my liver enzymes are going down. I have a meeting with my Infectious Disease doc next week to talk about the possibility of a virus and to see what can be done if it happens again. My oncology doc switched me from 4 sessions of big Taxol to 12 weekly sessions of smaller Taxol so it's easier on my bod and means I get to go to Providence for my sweet sister-in-law's wedding and I am hoping a conference in San Fran. I am negotiating now, damn it. Small wins while you can get them while living in the land of not knowing make a difference.

And, am watching my own personal shot clock get reset and run down, reset and run down.

12, 11, 10, 9, 8, 7, 6, 5, 4, 3, 2...1.

It's the not knowing that...

Ashen from the Inside

I wake up in the morning with a face that resembles the Laughing Buddha, except that I'm not laughing, just swollen and red from the steroids that have wrecked my sleep and made me edgy. I remember Mom looking like this too so I welcome the day with the sarcastic smile she used to give to say "this shit sucks" when we'd comment on the chemo.

Chemo fucking sucks.

Four days in and I can tell the difference already. The skin on my face has grown rough, I can feel the little hairs on my head starting to revolt. My breathing feels off and my scars hurt. I feel burnt from the inside out. I am in no way myself.

It's really hard not to despair right now, so newly on the edge of this phase, looking out 16 weeks and wondering how I am going to make it through this time. Maybe it will get easier (ha), maybe I am just going deep in this feeling right now, exploring it and making it my own before I put it aside and live through it. But I will say that I have never felt anything like this before in my life. And it's frightening.

But, as my friend Liz said tonight when I noted "chemo sucks ass" on my Facebook page: "Yes, it does. But then you are here. Healthy."

That's what I am trying to grasp on to tonight, the reality that I will come out of this healthy or somewhat like I was before this began. I hate my vanity, but I hate looking the way I look, feeling the changes in my body, feeling so hollow, ashen and carved out on the inside. I can't quite figure out how to pass the time, to mark the passage of this time, to check off the days and weeks coming up so that I can cling to it being over. I need something to physically manifest this experience to let me know where I am in the process. It just seems so long.

I guess there are things to look forward to...a wonderful sister in law getting married, a conference in San Francisco in October...little things that will mark the end time after this has come and gone. I need to set these markers up. I need to find the rock cairns along the way from women who have already traversed this path and can help me see the other side. I need to find the reason for the movement forward, every day.

Right now, I just feel like curling up and escaping for a few months.

Tonight I am off of the steroids for the first night, so here is to better sleep, a less puffy face in the morning, maybe a real Laughing Buddha to greet me as I walk out tomorrow. Here's to making it through. Here's to moving it forward.

These Uncomfortable Shoes

Brief update: Went to see the plastic surgeon yesterday for my checkup. Good news is that I got two drains out (now that was fun!). Bad news is he's concerned about the swelling and redness around my incisions (although the incisions look fine) so we took a quick blood test to see if I will need IV antibiotics (to the hospital with you, ma'am!) or not. Please direct all prayers, energy and otherwise good intentions to the healing of this redness. I'm really not up for the possible downward-casting decision tree on this leg of the trip.

And now, a story...

[note on this story: because of the foggy time line in my brain around my mother's illness, I don't remember if my mom was talking about my cousin Kim or my cousin Valerie in the scenario below. It could have been either because they are both amazing, amazing, amazing caretakers. So, Val, if it was you and not Kim that provoked this experience, you should get credit. Mom adored you too.]

"Well, Fran isn't a very natural nurse" my mom said to our table of friends as she took a drink of her water. "Not like her cousin Kim." The air crackled for a minute and the pasta turned to sawdust in my mouth. "What?" I turned and looked at her with incredulous eyes. "What exactly do you mean, Mother?"

Our dearest friend Gerry swooped in to save the situation "Susan, I am sure Fran is a wonderful caretaker! She's had two of her own kids and they are amazing. How could she not be?"

"She doesn't anticipate my needs the way that Kim does. Kim knows ahead of time that I need something, she pays attention to the little things. I'm not being critical of Fran, I'm just saying that it's not a natural strength of hers."

I stared at my plate, furious. How could she say that? What an impossibly hurtful thing to say! Hadn't I given up the past three weeks to care for her? Hadn't I quit my classes and moved to Houston to be with her through all of this? I remember my face burning red with embarrassment and anger, half horrified that my own mother would say such a thing, half horrified that she may have been telling the truth.

The reality is that nursing someone like my mom, and also nursing someone like me, is tough work. We are women who like to do things ourselves, have always been headstrong and independent and don't like to rely on anyone. My attitude with my mom's care in those first few weeks was "If she needs it, she'll ask for it." I mean, Mom seemed irritable and crabby when I'd try to help. I would do things wrong or the wrong way or not the best way. Given her way of living before cancer, I naturally thought she'd just let me know what she needed.

But now that I am on the other side of the sheet, I will tell you that it's an incredibly different story. People who have been through major surgery, whose bodies and hearts hurt want to be wrapped up in cotton wool, fed spoonfuls of nectar, bathed in golden light. They really want to be 12 month old babies whose parents allow them to do what they are able but whose caretakers have that freaky spidey 6th sense when something is going to go wrong or even just take the opportunity to make things wonderful. It is, in my mother's words, the essence of "anticipating need".  If you are a caretaker of someone who is normally a Viking, know you will have a lamb on your hands, even if they don't admit it. I didn't realize it then, but my "functional" care was not what she needed. She couldn't ask for it, I didn't know.

Last night I read with David cuddled up in my bed. Ah, the warmth of a snuggly little body and a good Harry Potter book. When he left, I sat there musing that I wish I had a huge, clean-smelling, warm Hagrid-size figure who could pick me up and cuddle me, bathe me in warm water and put me to bed fresh and happy every night. So good it would be to be that baby again, so wrapped in love! Our adult selves don't get that many opportunities to let go and feel the need for care in that way. It takes a major setback to bring it to our consciousness and then we work with all of our fiber to repress that need.

It's a pretty amazing experience to be on the other side of something like this. I mean, how many times has each of us done volunteer work with one (our own) mindset without being able to feel what it would be like to have to receive help? Or, just to walk in the shoes of another, slip on somebody's skin for awhile and know how their experience (need, desire, wish) might be? The world would be a different place if we had a machine that could expose us to what we don't or can't know. An empathy-adapting machine where in a moment you could know the truth of another's experience. For people with an open soul, it could change the world.

The end of the story with my mother is that my cousin Kim and cousin Valerie were amazing caretakers to my mom. I suspect my sisters were too, in the best way that daughters can be. For myself, the story came around again in the final three weeks of Mom's life when I came home to share a room with her (for awhile) and tend to her needs as her body was letting go. I had forgotten this part of the story, actually, until my sister reminded me about it. I think blocked it from my mind because it was both an intensely difficult time and one of the most deep and moving experiences with my mother that I have ever had. Things, as they do, come full circle.

[post script: I will say that during those three weeks, my mother told me at one point to "go sit on my thumb" because I was making her take her medicine." For those who knew my mom, I knew you were waiting for this oh-so-Susan punchline. Love ya.]

Gracious Space

Yesterday, I got off of a conference call, pushed in my chair, shouldered my bag and left work for what may be three weeks. It was really strange and incredibly sad to walk out of the office feeling this ick feeling of not knowing when I was going to be back. I am leaving behind projects that I really love, people who have been incredibly generous and kind, time with colleagues that I find warming and satisfying.  And I am leaving for something that is unknown and scary, a rolling into the inevitable and, worse yet, inescapable that sits just paces in front of me, no matter how I drag my feet.

There is a tension between this inevitable/inescapable feeling of slowly being swallowed by what is coming and the simple grace of letting it happen. In the words of the Cowboy Junkies: "the one thing in my life that these years have taught is/you can always see it comin', but you can never stop it." Struggle as you may to wish it away, joke it away, freeze it out, ignore it, cry it out, scream it away...it remains. Until you realize that it is what it is and sit with it, interface with it, level with it, accept it at your side and create a gracious space that allows you to be both afraid and fearless, loved and alone, valiant and cowering, illuminated and confused.

Because being "sick" is all of these things. With cancer, or at least early on-set cancer, you don't feel it in your body. It's like a little timebomb that over time you forget is ticking. It's the insidious guest that you forget is still staying at your house until the utility bill comes. It's the thing that causes you to chuckle, thinking surely that God has been worn down by the multitude of prayers hurtling heavenward and said "Fine! Fine! Enough! So I'll cure her (ping!). Can't you see I've got a lot on my plate right now?" It's the last minute reprieve from the path lab that comes minutes before the surgery that they perform to alter you forever...except it never comes. It's the three deep breaths and lights out and waking up, feeling around and trying to sort out which way the decision tree went in the OR.

So these anxieties are a little like that song about the boa constrictor...oh no, he swallowed my toe, oh gee he's up to my knee, oh fiddle he's up to my middle...Today I saw a friend and stopped the boa at the toe. I know I will get to Monday and see my sisters, have a little reprieve and keep him at my knee. By Wednesday, no doubt, he will be up to my neck. I keep breathing. I keep finding little things to hold on to (one of my dad's old wallets, mala beads and their 27 count made for me by my friend Molly (that reminds me of my girl Sha), my mom's fading but still present scent, cards from you all, pictures from Ava, hugs from David, a picture of Kali, deep rhythmic music, a smiling picture of my husband) that I can hold in my hand or feel on my skin to keep me grounded and not freaking out about what is coming. I know I will be fine, I just don't like getting there. I am not worried about the cancer (or so I tell myself), I am worried about the surgery. I am lucky, I am lucky, I am lucky. Breathe. Breathe. Breathe.

There was a song that was on auto-repeat for my sisters and me the entire time that we were living through the end of my mother's life. It has such special meaning for us all, but these lines from "Little Fire" always put the lump in my throat, every time I hear it.

"It says comes rest beside my little fire
We'll ride out the storm that's coming in
My friend, you know me and my family
You've seen us wandering through these times
You've seen us in weakness and in power
You've seen us forgetful and unkind

All that I want is one who knows me
A kind hand on my face when I weep
And I'd give back these things I know are meaningless
For a little fire beside me when I sleep"

So tomorrow is sitting with it, thinking about the religious tradition I grew up in and how there are lessons there about the process of surrender and triumph. Or, from David's wonderful Latin teacher's blog:

'non, si male nunc, et olim sic erit.'
'Even if evil is present now, it will not always be so'
Horace Odes Book 2 x

Amen.