83. Close and Yet So Far
Anticipatory Grief
I don’t remember what day of the week it was, or even the date, but it was a beautiful, crisp, clear, fall day in early November when Tim and I got into the RAV and headed to Auburn. Hannah and Jessica rode together — who could blame them for wanting to put some space between themselves and us. I’d been living with the news that I wouldn’t be living much longer for several days, and here we were heading to Auburn to drop a bomb on my mother and sister.
I’d tipped them off that something was up merely by saying we were stopping by with news. Remember, Covid was still fucking up everyone’s lives and it was most definitely keeping our 183 Wildwood family from seeing our 1 Inwood family — and yet here we were visiting unexpectedly on a weekday.
Marjorie was masked and standing in her doorway when we pulled to the curb. I could tell she expected bad news, her eyes giving her concern away. She watched four OBs close four car doors and one by one tentatively step in her direction. She stepped backwards — I think it was an instinctive protective attempt to put distance between herself and whatever hell we were ushering into her home.
My mother was sitting on the couch when we entered — my mother never sits on the couch. She is a lone percher and has many recliners and chairs upon which to do so. Yet there she was, sitting with her feet pressed firmly to the floor, her upper body leaning over her thighs, her arthritic hands clasped and pushed tight in her lap. There were no pleasantries other than a couple grunted “Hellos” amongst us.
I sat myself in a chair opposite my mother, everyone else milled about behind me. I didn’t really know how to jump into the deep end of this conversation, but I knew I had to and I had to do it fast — Mom looked so panic-stricken already. Time dictated my actions and words, “I am sick. Very sick.” My mother drew in a deep breath and began shaking. Marjorie spoke from somewhere behind me, “Mommy, do you want me to sit with you?”
“No,” she whispered.
I offered a timid smile at my mother then shook my head in disbelief that I had to tell her this: “Mom, I have terminal cancer.” She pushed breath out with the sound of a wounded animal following it. Marjorie joined her on the couch and began hand-swirling circles on Mom’s back.
I told them the sequence of events: bad alk phosphatase, more specific blood work, nuclear bone scan, full-body x-rays, blah, blah, blah. The news that day was delivered before I met with the oncologist and the orthopedic oncologist. I hadn’t yet been benched, which meant I didn’t know how fragile my skeleton and femurs were. No matter really, the visit wasn’t going to end with a celebratory cartwheel. A long silence claimed the space, interrupted only by my mother’s occasional, almost silent sobs. Marjorie pushed one question into the room. I’m sure my mother was wondering the same thing — hell, we were all wondering the same thing.
When? How long?
The only thing I knew at that time was what Dr. Wonderful told me after he read my nuclear med scans — it wasn’t about length of time per se, it was about the severity of the metastases. In Blog 18, My Bestie and My Doctor, I wrote:
He delivered the news — a death sentence really — with clarity and sympathy. “You have metastatic breast cancer of the bones. It is in your skull, cervical, thoracic, and lumbar spine, in your pelvis, hips, both femurs, both knees, and in several ribs.” Then he gave me his personal cell phone number. “In case you need to talk, day or night.”
I shared that information with Mom and Marjorie because it summed up everything. “I don’t know when, but it’s safe to say there isn’t going to be tons of time.”
Marjorie spit out hopeful snippets, “Maybe treatments ……. maybe when we know more ……. maybe there are trials.”
I shook my head, “This is terminal. I decided I’m not going to wage a fight that I won't win. I’m not going to drag Hadley through a shit fest. She needs to see me accept this news. The only thing I need is to enjoy this holiday season.” Heads began nodding, “Oh, and I already told Donnie and Denise, so when we leave you can call them and talk about all of this.”
Without knowing it, I laid a brick cornerstone in a wall I would construct over time. Recently, I realized my mother and sister were on the other side of a wall we sort of built together, though none of us knew there was any construction going on. I didn’t want to hurt them, so whenever I had something cancer related to share, I did so only when I had to. No matter the issue: bobbleheading, tooth breakage, new areas of Chewy Louie munching, the news waited until I could bring myself to tell them. Discussing those events unleashed emotions from Mom and Marchrie that were very difficult for me to handle. Let’s face it, there is absolutely nothing easy about any of this — and there is absolutely no way to travel this journey without tears, sometimes rivers of them. The problem for me was, I couldn’t handle their emotional pain because I was dealing with mine and my husband’s and my childrens’.
During the emotionally charged timeframe between meeting with the oncologist and the orthopedic oncologist, I left some of the ‘serious’ communication for Tim to have with the Loved Ones in Auburn. I didn’t want to answer questions because I didn’t really have any answers, and my patience level was iffy at best. Not to mention, the ‘pity’ vibe hung over every interaction I had with everyone who knew about my situation. Pity, while a completely normal reaction to this kind of news, is an ‘impossible to ignore’ vibe.
Add to that, the job of filling everyone in on the day to day became exhausting — thus the birth of the blog. There are 83 now, and a lot of information has been shared. I began putting my feelings on ‘paper’ because it was easier and way less messy without all that emotional stuff getting in the way. Inadvertently, my blogs built a wall between me and some really important people — the people who needed an emotional outlet and were struggling to find a comfortable balance with me.
In order to move forward, I’ll be taking a look back at previously written stuff. It’s not something I like to do, but the writings are part of history, my history, so for accuracy purposes I need to see the words and immerse myself in what was happening way back when. Besides, if there’s something I’ve learned through all this it’s that I need to do what needs to be done — case in point, “Hello recliner, meet my ass because it’s gonna be on you 24/7 for the duration of my life — deal with it.”
From time to time I mentioned that conversations I was having with Marjorie and Mom were mostly chit-chats about safe things. I never specified, but this is what we talked about:
“Today’s weather report is for sun but temps will stay in the 30s; did I tell you the garbage can blew down the street; boy it’s windy out there; Nicole postponed the birthday party for Evie because of the weather; the forecast for tomorrow’s weather is hot and humid. Argggh, it’s too soon for hot and humid.”
It doesn’t matter who said what during those conversations, what matters is that we were at a stalemate. We weren’t communicating and each of us owned a piece of the problem. In Blog 21, Twelve Days Before Christmas — the last six days, I wrote:
Later that afternoon, I spent a good amount of time chit-chatting with my mother and it was wonderful. Our conversations have been on the short side lately and I’ve missed our ‘other’ talks, the gabfests that usually ended with the poor old woman gasping for air because of something I said that tickled her funny bone. On this particular day, Mom and I stuck to the drama-free topic of meatballs and sauce simmering on her stovetop. “Do you think you could eat some? I could send some over.”
“I’d love some, Mom.”
“Good, oh that’s good, Sheryll Anne. Someone can pick them up mid-afternoon.”
I wasn’t sure at that time whether I’d be able to eat them, but I wanted them here just in case. I had a bout of nausea late afternoon and worried that I wouldn’t be able to tolerate the sauce and balls, but by 7 PM nausea edged out and hunger eased in and I ate a good bit of the dinner...It tasted like I knew it would and it made me cry because it tasted like I knew it would. Comfort food — Mom’s comfort food.
Chatting with Marchrie was more problematic. Her emotions live just beneath her skin and the family ‘funny’ is that she can’t make it through a Hallmark commercial without a tear or two. In Blog 35, Donna Sort Of, I wrote:
My sister walks through life in service of others. She spent many years as an elementary school teacher putting in long hours doing the ABCs of learning. She was a familiar face outside the classroom, spending oodles of time cheering-on students or pitching-in at after school functions because she wanted her classroom kids to know she cared about all parts of their lives. Most generously, she spent money she didn’t always have on kids’ school supplies, and Christmas coat drives, and giving trees, and, and, and.
Marchrie’s professional choice and service to others speaks to the big heart she has beating inside. So, from the moment her older sister entered a losing battle with cancer, she has easily been brought to tears. That is completely normal for anyone — and so perfectly part of my kid sister. If you know her, you know this to be true. Unfortunately, my response to her pain was to commiserate a bit, then to pull back. I just couldn’t handle the enormity of her grief. With each pulling back I did, the higher the wall of strained communication went.
I should state for the record that no medical information was ever put into a posted blog without my discussing it with Marjorie and Mom first. The dissemination of information, however, was done after I had my own emotional breakdown, and only when I knew I could handle the fallout from their impending one. That’s not to say they haven’t handled many things with a remarkably stiff upper lip, it’s just to say that I never knew what awaited me so I avoided things for as long as I could.
Carrying a heavy load on a very weak skeleton.
I discussed this with Heather, my hospice social worker. She said this type of distance is common and really upsetting for all parties — the person dying and those who are intimately involved with that person. Basically, we are parts of the same story, but we have two totally different plotlines. I’m the one with the death sentence, therefore, I need to focus on the loss of life — my life. And I need to do it now because I won’t have a later. Very simply stated, I need to wrap my head and heart around this fact: I won’t be here anymore. I won’t be part of the future. My future ended the day I was told I was terminal. With the pump of a metaphorical brake my road trip all but ended. I’ve been sitting by the side of the road waiting for the end. While I’ve been hanging out, I’ve been doing the work of dying. I’ve spent long lonely nights thinking about all of the things I won’t get to do, to witness. I suffer through the knowledge that there will be an empty place at every dinner table, around every Christmas tree, and in the car heading to Wells.
Tim and our girls, and Mom and Marjorie, and Donnie and Denise, are in a unique place — a rather nasty place. They are in a stage called anticipatory grief. They know they are losing me, and in many ways they already have. They are grieving the things that have already changed; the tight bond we shared, the conversations we used to have, the ones we can’t seem to have now. Until I pass, their grief is in a holding pattern. They are in agony, trying to be strong for me, emoting here and there because their hurt is so very much part of their lives.
I understand their suffering, and I wish I could do more, or be better at what I do, but there are so many more people in anticipatory grief than there are me. I’ll be the first to admit the holding back on conversations has turned this shit fest into a colossal clusterfuck. As it relates to Marjorie, I am very cognizant of something I wrote about in Blog 57, Isn’t it Ironic. I think about this often, too often.
Last November, my soon-to-be 61-year-old sister learned my fate. She did a bit of falling apart, then pulled herself together and got on with business, the business of taking care of our mother. Like me, Marjorie wondered whether the aged woman, the one who has pushed through whatever life handed her without hand-wringing or hand-holding, could shoulder the fear, worry and grief about her dying daughter. Like me, my sister has spent hours in prayerful thought.
I am completely sure Marjorie has spent some of her time in a ‘this for that’ barter with God because who among us hasn’t done that? With every fiber of my being, I suspect she has suffered through panic-shivers in the dead of night with this realization, the two women Marjorie has had by her side her whole life will, in all likelihood, predecease her. I can try, but I can’t fathom the weight of carrying the loneliness she must already feel, and the fear she surely bears.
In case you didn’t know, everything about cancer sucks: the shit you go through to try to remove it, shrink it, stop it, or change its course; the shit you go through if it comes back again; and the shit you go through if you find there’s nothing you can do to remove it, shrink it, stop it, or change its course. And then you are told you’re terminal. You suck it up and ready yourself for death — bad enough, but there’s a whole lot of work still to do. It is emotionally draining, for you and for everyone who loves you.
Thankfully, I have people who are walking close beside me. I tell one of them, the She Devil, everything about my physical crap and most things about my emotional state. You might laugh in the face of this statement, but before this shit fest took over my life, I kept my thoughts and concerns private. And then one day someone told me I’m dying, and I said, “Hello Blog, and anyone who chooses to read it, my name is Sheryll O’Brien and I am going to tell you everything there is to know about my life and my death.” This is sooooo antithetical to who I am. But, this is who I am at this very moment in my life — a dying woman trying to handle this crap the only way I can. I know I’m making mistakes along the way and I’m okay with that unless I find that I’ve caused unnecessary pain and confusion for the ones I love.
So what’s a girl to do?
Ask some questions and set some boundaries.
I called Mom and Marjorie and told them everything I wrote in this blog. I took ownership for keeping them on the outside of the wall I constructed, and I told them why I had to. I explained that sometimes their pain is like a weighted brick being tossed upon my fragile frame. That sometimes I just can’t carry their load, and so I find ways to avoid it, which means I avoid them. It’s not great, far from it actually, but I’m not beating myself up about this, nor should they. There isn’t a playbook for anyone to follow on death and dying. Yes, there are stages that people go through, but how and when each individual moves through the stages is as unique as the people moving to the other side.
In my most previous blog, Pretty In Pink, I neglected to mention an important part of why I think Hadley is beginning to move to a safe place, a stronger place. I have told her, on many occasions, that my death is going to suck (she loves it when I sneak an inappropriate word in now and then, so I do it). I tell her that it will suck for everyone who loves me and that it will make everyone sad. But I also tell her that she has a support system to help her work through her pain, and that she can help others work through their pain. I have reinforced this message over and over.
I somehow forgot to include my mother in this really important conversation. I know she knows this will suck and she’s lost more than her fair share of loved ones, but the other day Tim came home and told me Mom was feeling deep sadness that she and I will no longer have our daily morning telephone call. In a fragile moment, she apparently took hold of that thread and pulled it, and somehow it left her wondering if my little OB family would forget the women in Auburn.
She absolutely knows that would never happen.
But knowing things doesn’t mean you don’t fear other things.
So, what’s a daughter to do?
Call her mother and have a heart to heart.
We had an open dialogue Wednesday. It started with the reality that she and I will no longer have our morning chit-chats — it morphed into something much bigger — something that bothers her deeply. She is outliving me.
“It should be me. Our family needs you. You’re the leader of the family.”
I paused because I’m not a leader of anything, not really. I went along with her statement. “Maybe that’s why I’m dying first. Maybe I’m supposed to show you how to do it.” We laughed. “Maybe what I’ve been doing with the blog is part of my life’s purpose. I know it is helping me and others because they contact me and tell me.”
“Oh, Sheryll Anne, you’re helping so many people. I get a lot of help reading your blogs, and Marjorie too. I think I misspoke when I said leader. I think I should have said the glue — you’re the glue that holds our family together.”