I know when you read that title you did a double take. At least you did if you are in the medical community or watch crime shows. I borrowed this idea from a friend who has had multiple losses in her own life, and who caught me up just the same. It makes an important point.
DOD: it's not the Date of Death that truly rocks your world when someone you love is terminally ill. It's the other DOD that moves you off your axis- the Date of Diagnosis. That never to be forgotten moment or moments when you realize your world is coming to an end as you know it, imagined it, planned for, dreamed of- all of that changes. Hugely.
Yes, I know the day your beloved dies is huge. Truly, I do. But you know what? If you have been lucky enough to face an illness together you have had time to be prepared for what's coming. (Did I just say lucky enough to have an illness? Funny how your perspective changes over time.) But the date of diagnosis? Who can be prepared enough for the unknown, and for how it is presented?
When Linda was first diagnosed with breast cancer years ago, she went in for a routine mammogram. She was fit, took her vitamins, exercised like a fiend (and got irritated with me for not doing so) watched her weight and diet. What did we have to be worried about? An hour after her appointment she called me from a pay phone on the side of the road (remember those?)
"They called in an ultrasound tech. Then a specialist. I have a tumor. I'm in Winter Haven. I don't know where I am. Please come home and meet me." Truly- when your world is rocked you do lose your bearings. We raced through meetings with a surgeon (who acted just like a surgeon- he was God and he knew it), surgery, recovery. All the while I was consulting unofficially with our hospice oncologist at my office. He minced no words with me- "Get into chemo. Get things in order. Take a nice vacation. She's going to be on hospice."
Then we met with the treating oncologist. By that time we knew the tumor's forces that were lurking in Linda, despite a full mastectomy. Of the 18 items they did pathology for, 14 were deemed "grave" in their outcome. Think about it. They use that word for a reason. So there we were with the oncologist. Dr. Fraile looked at both of us. We were in a tiny little consulting room, paneled in ugly brown faux wood. Linda was on a miniature exam table, and I was standing. I will never forget the rushing sound in my ears and the look on her face when he said "They got the tumor out, but it's already spreading like wildfire. Linda will be dead by Christmas."
I know why he said it that way. He was one of us. Linda was a nurse. I was the social worker he saw all the time. He knew us as being in the circle who understand the reality of ugly. But that feeling- that DOD- it is like nothing else. Because that's when you have to really make the plans. To face what's coming. To know what you have left to do. That's when the carpet is yanked so spectacularly from under you with no warning.
Ten years later Linda was cancer free after a battle she won. But we were back in a hospital, and she couldn't breathe. Pneumonia- again? IV meds, but they weren't helping. We had a pending appointment with a pulmonologist, but were in the hospital the day it was scheduled. A hospitalist walked up to me in the hallway. "Come look at the X-Rays" he said. Sure- I must be able to understand them? He points to Linda's lungs. I was looking for a tumor. Nothing looked ominous to my eyes. He waved his hands over the entire film. "See those clouds? That's not pneumonia. That's fibrosed tissue. She has pulmonary fibrosis. She's going to die. She needs to get out of the hospital today." A familiar rushing filled my head. I was left to go tell Linda what he said. That DOD- once again our world changed. Tremendously. Later we would face a cardiologist who added another DOD of heart failure, common to PF. "You have right sided heart failure. It's untreatable. You are going to die sooner." Then again the pulmonologist, who said "I wish I could do more. You're going to be pushing up daisies soon in the big dirt nap."
It is at those moments that you realize that there won't be grand kids you get to watch together on the front porch (yes, lesbians have the same dreams the rest of you do). That a special trip is no longer possible because you are too sick for the Bucket List you waited to do until later. And then suddenly it was later. It's then that the soon to be survivor realizes that "later" actually means "alone." Trust me- it is not a good feeling. You suddenly begin to resent retirement commercials because they always have a happy healthy couple out skydiving or something. You being to hate the stupid signs in cutesy stores that say stupid things about life not being about the breaths you take but what you do. How stupid is that? Really? Breathing is an essential part of that living thing. I'll admit that particular one rubs me wrong every time because Linda died of PF, and now I've added anything about holding onto memories to my list of plaques I will never invest in.
The DOD for Casper is not what's coming soon- and that one most certainly is- but the day we finally, for once and for all, had a doc tell us that she absolutely had Lewy Body Disease and that there wasn't even research to enroll in. After three years of misdiagnosis, guessing, blaming, outrageous medical bills for private consults and testing, we finally had a DOD. By that time Casper was already fully disabled. Her memory was fading fast. But that day the rushing noise was when I heard her answering the questions for the MMSE (Mini Mental Status Exam). I'd convinced myself that the memory meds she was taking were helping, even a little. I'd hounded the nurses I work with and our doc to tell me what they really thought of them, and some were honest, while others hedged out of kindness to me. That rushing came as Casper could not tell him where she was, how we'd gotten there, the weather, the season, the year. I kept my head down as she searched my face for approval. That time I just couldn't look up. It tore at my heart. It tore hers, too.
On the way home (nearly two hours) she said "I didn't pass, did I?" Yes, you did fine. "I have that disease we were worried about?" Yes, you do. No- WE do. This is our illness. And this is our DOD. And now what limited time we thought we had just got so much smaller. The next trip to Hawaii? It will never happen in this world. I hope it does in the next. The need to renew her driver's license and nursing license? Not so much- except to her it mattered, and in fact this week I renewed them both. (Even social workers are allowed a bit of denial). The plans to move? Gone. The partnership/friendship/parenting relationship she had with Kerry in particular? Pain beyond belief to even think about that one. Even now. And especially now, as Casper has used her time now to say special goodbyes to each of the kids and tell them how proud she is of them and that she got to be mom for even a little while.
That DOD gets you ready for the other DOD. It's the one that rocks you. The final one is what seals it and throws you into the final grief process. But grief does not start with death. It begins with knowing death is coming, and about to steal your plans and your life as you know it. It certainly has in my world.
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