A Mess of Acronyms

It may seem strange but when I re-read the last two posts I realized that I never mentioned my dad's final diagnosis. Initially, he was diagnosed with ALL (acute lymphoblastic leukemia). His original doc in Alabama was a little unsure, though, whether it was ALL or AML (myeloid, a.k.a. myelogenous) because the cells seemed to have characteristics of both. Turns out that it was ABL (biphenotypic), which means exactly what it sounds like -- it's a weird mix of both ALL and AML. No wonder it was so hard to treat. The treatments for the two types are somewhat different. This hybrid makes up only about 3% of the total number of leukemia cases, and its survival rate is incredibly low. It's basically untreatable. When we found out (about 2 weeks before my dad died) I was pretty unhappy that the docs at the Mayo Clinic in Jacksonville hadn't figured it out til then -- I mean, they're supposed to be experts, right? When I had more time to think about it, though, I realized that we had been given a gift. If my dad hadn't received any treatment (even for the wrong type of cancer), he would likely have died much sooner and we wouldn't have had that time to come to terms with what was happening. Sure, he wouldn't have suffered as much from the treatment side effects, and I hated that for him. But, I think he would have wanted to make that sacrifice to have the extra time. Besides it being nice for us to have him around longer, he got to say goodbyes, to make plans (he planned his funeral with an old family friend, and had a list of hymns so long that we would have been in the church for days to get through it all!), and to comfort and prepare us all for his death. Anyways, I just wanted to remember that. It helps me get through some of the tough times to think that we snuck some extra time.

Happy Six-Month Anniversary

Dear Dad,

So much has happened in the past 6 months -- things I would have liked for you to have been here for, things I felt like you were here for, and so much more.

My car has had problems lately, and every time I take it to the shop I think of you. You asking what's wrong with it, where I'm taking it, how much they're charging me.... I asked Mom's husband some questions, and he's really great, but it wasn't the same. I missed your input. I think that the mechanic thought I had lost it when I teared up as she told me I needed repairs. Sure, it was going to be expensive, but really I just wanted my Dad.

School's been rough, too. I've been pretty unmotivated. And all I can think of is what you'd tell me. You'd be a little gruff and tell me just to get to work. Maybe you'd tell me about times you were having trouble getting a proposal going. Maybe you'd tell me that I'd be so happy and have time to relax when the PhD is all over. But mostly I think you'd just tell me to get off my rear and get to it already. Then you'd send me some goofy card to make me feel better about it all, telling me that you just wanted to see me with all of those stripes.

Sometimes I try to imagine how you'd handle me during my grieving if you could be here now. It's one thing I can't wrap my head around. The only part I can be sure of is that you'd give me a big hug. And you'd call to check up on me. And if you didn't get me on the phone you'd leave me some dorky message saying "Tag! You're it!" or "Hello, 443-365-XXXX, this is 334-774-XXXX. Call me." And I'd smile when I got the voice mail. I can't believe I used to delete those. I wish I had just one of those now so I could hear your voice.

I did find the pictures we took in February, the last time I saw you while you were fully conscious. For months, I couldn't find them. They didn't seem to be stored on my camera (the one you gave me last year). But the other day I downloaded pictures to my computer, and there they were. One with me and one with Sheryl (things with she and I are going really well, by the way). I had almost come to terms with not having them, but when they popped onto my screen, I got so excited. Then, of course, I got a bit sad. You looked so rough. You were so thin, and yellow, and hollowed out. But there was a look of serenity on your face, and you were smiling, and I could tell that you meant that smile. And the real kicker was that in the photo, you were comforting me. The guy who had lost over 50 pounds, who couldn't make it down the hall because his feet were so swollen, who had been through so much in the previous three months, and who had only a little more than 2 weeks left to live had his arm around me, comforting me the day before I left to come home. I value that time with you so much.

Dad, mostly what I want to say is that I miss you. I love you. And I'm so proud of you. I can only hope to make you as proud of me. Thanks for being my dad.

Not goodbye, but see you later,

Keri

long time, no update

well, i've been consistently inconsistent with my blogging. i don't know how people blog through such difficult times. i wanted to be able to have this blog later, as a reminder of the minutia. instead, i have it as a reminder of the big moments, the trying times.

my dad passed away on march 17th, 2007 at 8:45 pm on the nose. he was surrounded by family and comfortable under the effects of fenatanyl and a myriad of other drugs. prior to his passing, we were able to spend a good bit of the afternoon talking to him (he was on a respirator and mildly sedated). it was good to be able to say our goodbyes. and to have him be able to acknowledge hearing them by nodding his head very slightly and moving his eyes and hands. and it was heartbreaking. so heartbreaking.

so here it is, 2 months later, and i've reverted to shock. i can't process the idea that my dad is dead. gone. forever. dead. so strange and unwelcome. there's been a fair amount of crying. mostly random tearing up and spilling over. unpredictable. but i suppose that's to be expected.

the next month promises to be treacherous territory. my brother is riding in the team in training century ride at lake tahoe on the 1st sunday in june, benefiting the leukemia lymphoma society, and i'll be in the crowds cheering him on. the next sunday is dad's birthday. the sunday after that is father's day. and comps are the thursday of that week. a tough month ahead. and no dad to lean on for support. wish me luck.

not in the handbook

so, he's dying. chemo hasn't been effective. has hardly touched his leukemic cells. this, after he's travelled to mayo clinic in jacksonville (end of jan 07) and undergone a 2nd round. the drug called ara-c resulted in terrible neurologic side effects -- stumbling, mumbling, fine and gross motor issues. other side effects this time around included so many mouth sores that he couldn't eat or speak, loss of his voice (due to sloughing of cells in the throat?). it's hard to tell what's the leukemia and what's the chemo. down to 200 pounds (45 pound total loss). unable to tell when he's about to urinate or void. having to get my dad clean, dry pants. cleaning spilt urine off of the floor. asking techs to change his bed. seeing him depressed. hearing him say that he can't do this again unless he's guaranteed success. and now, bone marrow biopsies tell a different story. no need to face chemo again. get some rest. spend time with your family. wait for infection. his response: i just wanted to see you (me) with all of the stripes on your robe (phd in 1 1/2 years). me, too, dad. me telling him that i had no way to express how much i loved him, and him saying that my hand on his shoulder said it all. i'll miss him. i can't imagine not having him. i can't imagine watching him be sick anymore, though, so i hope he goes quickly. why don't they teach us how to deal with this in school? it's not in the handbook.

Home Again, Home Again

I got back from the funeral in Memphis last night. It was great to see my family. My grandmother has the most hysterical sense of humor. We laughed for a large part of the weekend. It was definitely a Southern funeral, with more casseroles and congealed salads and desserts delivered by little old blue-haired ladies than you could count. It was great to see so many people turn out to support my grandma.

An interesting story... My grandfather, on the night before he went into the hospital, called my grandma into the bedroom from the kitchen and asked who was in the house. She replied that no one was there, as it was about 10:30 p.m. He seemed shaken, and insisted that he had seen someone in the house, but went back to sleep. In the middle of the night, he woke her up asking the same question: who was in the house? She again answered that no one was in the house -- she had checked that the doors were locked before she had gone to bed. The next morning when they woke up, before they decided to call the ambulance to take him to the hospital, he turned to my grandma and insisted that someone had been in the house the night before. In fact, he said, they had been in the bedroom. She was a little bit exasperated, and asked him what they had looked like. His response? There were two of them in bright white robes. How amazing. I'm certain that the visit from these angels made his passing much less frightening for him, and hopefully for my grandmother. Some people may think I'm crazy for believing it, but poo on them. My grandpa was a man of God, who quietly and humbly did God's will. So, I'm proud to say that my grandpa got a personal escort to heaven. Awesome.

Memphis-bound

My grandpa died Thursday morning. It was rather merciful: painless, quick, not entirely unexpected. So, I'm off to Memphis for the funeral. When I get home, I'll have one week to the day before I leave for a month to visit my pops and help him through the chemo rollercoaster. My cats aren't going to recognize me after the new year starts. Oh well. I'll feed them and they'll forgive me.

Which news would you like first -- the good or the bad?

Let's go with the good first. It's always nice to get good news. This morning the results came in regarding my dad's Philadelphia chromosome. Basically, a positive finding indicates that he's particularly resistant to the treatment for the leukemia and survival or cure rates are cut in half from an already low 30% 5-year survival rate. And it's negative! Thank God, some good news can be energizing. I had a ridiculous grin pasted on my face all day. I'm sure that people were confused as to why someone whose dad has just been diagnosed with cancer was so darn happy, but I think it's pretty awesome. I was telling some friends about it and likened it to the following: you get thrown into a coliseum with 70 bulls. You're told that there may be 15 more bulls added to the mix in a week, so get ready. Then, after the week has passed, you're let off the hook with only the original 70 bulls. Sounds like a lot of bulls, except when you compare it to 85 bulls. At least that's how I'm thinking of it.

After my incredibly productive, grin-worthy day, I made my way home to prep for a knit night I was hosting. Nothing big, but I needed to sweep and clean the bathroom. I also made a delicious vegan pumpkin pie. First one I've ever tried. Pretty yummy. And it was good that I had some baked goods on hand because, lest we forget, there was still bad news to be had.

So, my pals and I were sitting in my squishy new furniture, knitting, listening to some Yo La Tengo, just relaxing. I was sitting there thinking how lucky I am, and just kind of soaking in my blessings. When the phone rings. It's my dad. I went in my room to take the call, and it turns out that my grandfather is in the hospital in Memphis with pneumonia and sepsis and is on a respirator and sedatives. And he's not expected to make it through the week, maybe not even through the night.

What the hell? Can't a family get a break? I mean, I'm so grateful for what I have. And I don't mean just material goods, but my relationships with friends and family are amazing. I just know the most incredible people. But, really, is this fair? Sure, he's 85 or 86, and he's been sick on and off for quite a while, but couldn't it all have gone down either before my dad got sick or after he got well enough to fly so he could at least make it to the funeral? And my grandma is just going to be heartbroken. As are their daughters. This is all so much for them to go through.

But, silver lining: pie was at the ready. And I had a room full of friends to walk back into, and 2 wonderful cats to curl up with later. So, I'm thankful.