For many years, I'd go out to Des Moines to "surprise" my grandmother for her birthday. I put the word surprise in quotes because, really, at some point she probably caught on. ("Oh! You little rascal!")
For whatever reasons over the last few years - usually work - it's not been possible for me to get out there for my annual "surprise" visit, so I've gone at different times of the year instead. In 2008, I actually made it out there twice - once in the spring before I left for Paris, and again in August. We had a great time in April while I was there, but I could definitely see the physical manifestations of the disease that had begun claiming her body. They're going to find a cure. I don't know how, at the age of 40, I was still telling myself she was never going to die, but I was. Misdiagnosis. And I believed it.
I know it's weird. It's not like I go around wishing immortality on my loved ones but, when it came to my grandmother, it's like my brain somehow got suspended into the thinking patterns of a five year-old. Denial. And selfishness. But mostly denial. (And selfishness.)
I made a hasty and impromptu visit again last August (2008). Probably because I'd heard or sensed that she was declining. I drove out there and, after one day, I had a total meltdown. She still looked beautiful and healthy and was living independently - but...
How do I explain this next part?
Let's just say that a big ol' tidal wave of reality came crashing down on me and I finally woke up. Your grandmother is very sick and has a disease for which there is no cure. She's almost 86 years-old and she's dying. GOT IT?
I completely freaked out, packed up my stuff and high-tailed it back to Denver - bawling the whole way. Yeah, I'm so not proud of that. At all. But I guess that's when I finally accepted the fact that, well, you know. And, if my out-of-character and immature behavior around that visit weren't bad enough, I actually started fearing talking to her on the phone because I was afraid of what I might hear. So denial turned into avoidance. Not total avoidance - we still talked, just not as much - or for as long. I'm pretty sure that had I had a healthy and realistic perspective on my grandmother's mortality from the get-go, I could have parsed these irrational behaviors out over the course of four decades, but I didn't, so there you have it.
She went into the hospital in May after she took a fall. I didn't know it until just recently, but apparently it was pretty bad. Not the fall itself, but how her disease was progressing and the fact that the blood transfusions weren't working as well or for as long as they had been. She was losing weight, losing energy, losing the battle.
I'm not sure why I didn't know other than maybe my family was afraid to say anything to me. I still remember the conversation with my mom after Grammy had been diagnosed with myelofibrosis. My grandmother had maybe three colds in her life - she just never got sick; that, coupled with my immature fantasy that she was going to live forever - well, yeah, I'm sure that wasn't the kind of news my mom looked forward to giving me. Even my grandmother was reluctant to talk to me about it, though I realized she didn't really talk much about it to anyone at all, except maybe her kids.
She "recovered" enough to go back home but her lifestyle had changed significantly by then. She stopped driving and, for the most part, stopped leaving her apartment. This past August, I was talking with her on the phone an she asked me when I was going to visit her again. She'd never before asked me that question so I had a feeling she had a feeling...
I knew that my mom and uncle had made plans to visit her in late October. Normally they'd go out for her birthday (October 22), but this year they booked their trips out a week later. Knowing that they were going out there to see her gave me some comfort because I wasn't sure how I was going to swing it (can't just close the bookshop, right?).
Everything happens for a reason - good or bad. I've always subscribed to this theory, but never more so than with the events that took place next.
My grandmother had a blood test done on October 23 (the day after her 87th birthday) and they discovered that her white blood cell count had gone upwards of 200,000 (a healthy count is somewhere between 4,500 and 10,000) and her platelets were hovering around 7 (normal range: 150,000 to 400,000), so they hospitalized her immediately. She would receive a couple of blood transfusions, a platelet drip or two and they were going to release her after about four days - just before my mom and uncle were to arrive.
When she found out that Grammy was in the hospital, my mom made arrangements to extend her stay so that she could get Grammy settled in at her apartment and take care of her for awhile.
They got into town on October 29 - Grammy was still in the hospital and it wasn't clear when she'd get released. Meanwhile, I'd made plans to come out to see her when I'd initially found out she was in the hospital. I think we were all feeling a heightened sense of urgency this time around.
My husband's contract (job) ended on October 31. Not an ideal situation for our family, but it meant that he and our daughter could work at the bookshop so I could go spend a few days with my grandmother: I'd drive out on November 1 and come home November 5 in time for the weekend events at our shop.
I got to the hospital just after 5:00 on Sunday evening and, as I was going down the hall to her room, she happened to be out for a little stroll with my mom. You have no idea how happy I was to see her - to see her up and about. I walked with them around the floor, taking note of how tiny she'd become. Breathe.
On Monday morning when I got to her room, my mom was already there tending to her. She was very itchy - due either to a medication or kidney and/or liver issues. Out of her mind itchy - and this would plague her until the end. We took turns putting lotion all over, scratching her back, rubbing her feet, getting her vaseline, walking her around the hall, getting her situated in her chair, back in bed, bundling her up, re-bundling her up... it was non-stop like that until about four days before she passed. She was restless and itchy - but, thankfully, not in any pain.
Anyway, on that first Monday, I was sitting on her bed with her and she said, "Have they told you my prognosis?" I said, "No, tell me."
"Well, I have about one or two months." To which my mom said, "Mom, that's not what the doctor said, that's what you said." Her short-term memory was a bit glitchy, so my mom was gently reminding her that no one had set a time-line yet. But, when someone tells you that they believe that their death is imminent, well - you sort of have to pay attention to that.
At that point I asked my mom if I could have some time alone with Grammy. We held hands and she looked into my eyes and lovingly said, "I don't want you to cry. I haven't shed one tear over this - it is what it is and there's nothing to be done about it so we must accept it." Of course I started to cry. She went on, "I want you to live a good life. I love you and am so very proud of you - enjoy this life and be happy."
If anyone lived a good life, it was she. Always smiling - always finding the joy - always grateful. She'd been the ultimate role-model - I knew exactly what she meant. But - ugh - it was like a hug and a punch in the stomach at the very same time. It was that exact moment that I'd finally fully acknowledged and accepted - and understood - the inevitable.
Four weeks ago today, on that Monday afternoon, we (mom, aunt, uncle and I) met with Grammy's oncologist. It was purely for our benefit - our chance to ask questions. He showed us her medical file - more than two-inches thick - and reminded us that it had been almost exactly three years since her November 4, 2006 diagnosis.
What were her options at this point? Stay in the hospital? Not likely. Back to her apartment? No - and probably never again. Nursing care? A possibility. Hospice? Also a possibility.
We didn't discuss the options with Grammy until Tuesday. She wasn't even trying to hear the word "hospice" so it was decided that she would go back to her apartment building and take up residence in one of the apartments in which she'd receive ongoing nursing care. We had a plan and, at that point, I was still planning to come home on Thursday.
On Wednesday morning, I wanted to get to the hospital early in hopes of catching the doctor. We were all anxious about her counts and just wanting as much information as possible. I got there at 7:00 and Grammy was up and about opening the blinds to her room; the weather had been unseasonably warm and gorgeous and she wanted to let the morning sunlight in.
I'd missed the doctor by 30 minutes.
"Is everyone else coming this morning, I've made a decision and want to talk to all four of you together so I only have to say it once."
I told her that Nardi would be stopping by on her way to work and that she should be there any minute.
"Did something change, Grammy?"
"Yes. I think so."
When my aunt arrived, and we didn't know when my mom or uncle would be getting there, Grammy went ahead and explained to us that she'd had a nice, long talk with her doctor and that she'd made the decision to go to Kavanagh House (hospice).
The doctor told her that she had become 100% transfusion dependent and that, while she'd be under the care of a skilled nursing staff, she would not be able to receive her transfusions anywhere other than the hospital. This would require her to get up and dressed each morning and spend four hours each day at the hospital. "To what end? It might prolong things for a few weeks or a month, but it's too much of a burden. I've made my decision and I'm okay with it."
She was unusually calm and lucid as she delivered this news to us. It was as if she transcended everything (the itching, the restlessness, and surely a good deal of anxiety - whether she'd admit to it or not) in those moments. It's so hard to adequately explain, but I knew she was completely at peace with her decision and that gave me the strength and fortitude I'd need to get through the next stages: I just didn't know it yet.
Needless to say, I opted to postpone my trip home.

At IMMC - Monday, November 2, 2009: Her smile is genuine, mine is not (crying on the inside). Oh - and that's the natural color of her lips. Gorgeous.