Happier moments

C. on the beach in San Diego.



C. petting dolphins at Sea World.



Things have been so sad this past week that I never got around to blogging about the good stuff. Mike and I got married in San Diego on January 21st. The ceremony was beautiful, the weather was gorgeous, the setting was perfect, and Mike was incredibly handsome. I was a little scatterbrained, but everything worked out in the end. San Diego was amazing, and Conner and I both enjoyed the break from the winter weather.

It was actually our second wedding. When we found out my mother's condition was worsening significantly, a group of friends got together to fly Mike out here so that we could have a church wedding just for my mom. It was very last-minute and hurried, but it was the best gift we could have ever given her. It was the last day that she "was herself," the last time she ate, and the last time she left home before returning to the hospital.

Mike is here now, and I couldn't be happier. No more nightly phone calls and frequent trips to the airport. He's here...for good.

I'm sure I'll have more to say about the past couple of weeks as I digest it all. There will also be wedding pictures as soon as they make their way into my hands. Right now I'm just searching for normalcy.

Another obit

From Germany.

She's...

gone.

Relapse

From www.labtests.com:
In an adult, a normal count is about 150,000 to 450,000 platelets per microliter (x 10^–6 /Liter) of blood. If platelet levels fall below 20,000 per microliter, spontaneous bleeding may occur and is considered a life-threatening risk.

She just left for the hospital to get a transfusion. Her count is 15,000.

Fun at the funeral home...

...and other stories.

Today we went to the funeral home to plan my mom's funeral service. No, she's not dead yet. She just wanted to be sure that this was taken care of while she was still able to make her wishes known. We wrote her obituary. Talked about family. Who's gone already. Who will survive her. What she's done in her life that's worth mentioning at $7.50 per column inch in the newspaper. My dad sat and beamed as he told the funeral director about an award she won, the soldiers she baked cookies for, the restaurant she was waiting tables at when he met her, the people she's cooked for at the community kitchen... You could see in his eyes exactly how blessed he feels to have spent the past 31 years with her. You could also see the pain in knowing that there isn't going to be a 32nd year.

Every night now, I have dreams about her. They start out as something normal - eating dinner, shopping for groceries, watching something on television. Normal things that every family does. Quiet, calm, peaceful. She looks healthy. Not only does she still have her hair, but it looks perfect, shiny, and full. I always think to myself in these dreams that I'm jealous of how perfect her hair is. Quiet, healthy, pefect, yet somehow I wake up trying to catch my breath after everything de-evolves to screaming and anger. Not her at me, like it always was, but me screaming at her and calling her names. Not asking why she isn't honest and open about her illness, but shouting at the top of my lungs how much I hate what a fucking liar she is.

I know it's just my brain making up for all the things I haven't gotten around to saying. Things I'll never say because it serves no purpose. We weren't close before she got sick. We never spent more than an hour or two in eachother's company without a fight breaking out. Now we never fight. I hug her every time I leave. I smile and bite my tongue because fighting doesn't make any sense any more. That doesn't mean my brain doesn't need to do something with the words unsaid and the feelings bottled up. I just wish it didn't happen every night. Sometimes three or four times a night, waking up in a cold sweat. Wishing I didn't feel that way. Not on the surface, not even deep down inside.

She's home from the hospital. They let her out the week of my birthday. There's nothing they can really do for her any more. They can keep the fungi under control, but in the meantime they can't give her the chemotherapy she needs to keep her leukemia from relapsing. Without chemotherapy, the relapse will come any day now. They won't be able to treat it without the fungi growing out of control. When she relapses, she will die. We can see her getting sicker. She's been throwing up every day, several times a day for the past two weeks. First she told us it was a reaction to her medication (the same medication she's been taking, without incident, for months now). Now she says it's because food tastes so good that she eats too much (a week after she bemoaned the fact that her tastebuds were destroyed by the chemotherapy and nothing tastes good any more.) Even as she moves around the house, it looks like someone has pushed a button that makes her slower every day. Not enough to notice from one day to the next, but then you think back a week and realize that she's moving in slow motion.

At least she got to spend Christmas at home.

So it's been...

...a pretty lousy week.

First the update on Mom, since I know that a good chunk of people come here to find out what's going on with her. She spent the week following her surgery unable to talk or move. She was being fed through a tube and her breathing was assisted. The doctors weren't sure at first why she wasn't "snapping out of it," but they finally figured out her electrolytes were out of balance. Last Saturday she spoke again for the first time. She's still very confused and gets tired very easily. I have been really sick lately, so I finally got to go see her today for the first time in a week. It's sort of like walking into a horror movie. She's aged thirty years in the past three months and talking to her is a challenge. She speaks, but it's a mixture of English and German and often doesn't make any sense. She doesn't realize when her actions or her speech are inappropriate, which is embarassing around the nurses and the kids. She's actually been getting worse and more confused as the week has gone by. We can see my dad starting to crack a bit, too. His speech patterns have been a little strange lately, which tends to indicate an upcoming breakdown. My sister and I are keeping a close eye on his behavior so that we can intervene before it gets out of hand. I could say that I don't want to deal with any of this any more, but that would be both obvious and futile.

Other reasons this week has sucked: I've been sick. I have a nasty chest cold that has been keeping me up at night and kept me from finishing the 5K race on Thanksgiving. I had been looking forward to this race since I started running in May, so it was really dissapointing that I had to stop. I ran the course last Saturday, so it's not a matter of me not being able to finish it under normal circumstances. I just wish I didn't feel so disappointed over something that was out of my control. If I can get to feeling better over the next week, I'll run a 5K in Rochester next weekend so that I can get one more in before the end of the year. Mike is going to come out to see me next weekend, so he's being extra sweet to take time out of his trip to cheer me on. While I'm sure he'd much rather sleep in Saturday morning, his encouragement of my goals at the expense of late mornings is just one of the countless things that reafirm how lucky I am to have found him. (Even when things suck, I can count on Mike to be a bright spot.)

I spent Thanksgiving alone at my house. After the failed attempt at the race, I was too sick to head out to my sister's house. Even if I had wanted to, the roads were in terrible condition from all of the snow. My dinner consisted of two frozen burritos, and dessert was a Tootsie Roll pilfered from my son's trick-or-treat bag. Other than that, I napped a lot and tried not to be too depressed about the race.

But things are looking up. I'm back to being pretty much caught up at work. My birthday is in just over a week. Mike is coming out to visit. I've been able to do quite a bit of housecleaning during the long weekend. I'm bound to start feeling better any day now. I have some crazy (but attainable) goals for running next year. I'm going to be married to an incredible man in less than two months. My kid is doing great in school. My tiny new nephew put on a whole pound last week. I'm still making progress on my bass playing. I need a belt for my new jeans. I got an amazing deal on airfare for C. and I for the wedding in San Diego. I get to leave the tundra of upstate New York in the middle of January to experience the west coast for the first time. I have friends who genuinely care about me. I've got a really good chance at getting a good, fun part-time job to help out with the recent financial crunch.

So many good things. I really shouldn't complain so much.

Update

My mom's surgery:
She was scheduled to go in on Thursday morning, but her surgery wound up being pushed off until Friday afternoon. The procedure was expected to last six to ten hours. After a little less than two hours, the waiting room clerk called us to the desk and said the surgeon would be up in a couple of minutes to talk to us. It took about ten minutes for him to get up to the waiting room. He was looking at the floor and took us all aside into a separate room and closed the door. My sister was fighting back tears, and my mom's best friend was bordering on hysterics. We were all sure that she was gone, but apparently the surgery went much faster than expected. I could have cockpunched the surgeon for not saying something sooner or at least having less disheartening body language. She is still in the ICU, and not recovering from the surgery as quickly as the doctors had anticipated. I spent all day Saturday with her in the ICU, and while she could respond to things, it was obvious she was very disoriented. She thought I was her mother, and any time I left they said she cried out for her mom. I don't think I've ever experienced such emotional stress as I did holding her hand all day, reassuring her, and keeping her from pulling out her tubes. She didn't recognize my dad when he made it to the hospital Saturday night. He stayed with her all day Sunday and her condition didn't improve. They are probably going to put her back on a ventilator today because she is having trouble breathing on her own. But she's still alive.

I'll be going back to see her tonight after work. Hopefully she is a little more cognizant of what's going on. I hate to think that she's going to make her way back to reality and not have anyone she knows there with her. On a side note, one of her ICU nurses today is a girl I went to school with in Germany. Small world.

My sister:
She had her baby on Saturday morning. He was a month early. Luckily, I convinced her to head back home Friday night to take care of a few things, or else she would have gone into labor at the hotel and had her baby in Rochester. The baby is adorable (of course), and both mom and son are doing well. I told my mom about the baby while I was with her on Saturday. I know she didn't understand, but on some level she must have registered something. Later in the afternoon, she got a little agitated and said, "Baby's coming. Baby's coming." I can't begin to express how glad I am that she made it long enough to hopefully be able to see the new baby very soon.

My Fiancé:
He's coming to visit the weekend before my birthday! Here I was trying to figure out how I was going to make it until January before I got to see him again. Now I only have to wait a few weeks. The hard part will be letting him go back to San Diego once the weekend is over, but I know he'll be back for good at the end of January. With all of the emotional turbulence of the past few months, it's great to know that I can look forward to settling into normalcy with him soon. Sounds crazy, but I can't wait to be bored with him. Just to have a weekend with nothing to do, no trips to the hospital, no long distance phone calls, no cancer, no fungus, no stress...just being bored.

So much for...

...the even keel.

The study drug my mother is on hasn't been as effective as the doctors had hoped. They have to remove her spleen. They don't know if they can perform surgery on her, since her platelet count is so low that she would run the risk of bleeding uncontrolably. Her oncologists will be talking to a surgeon tomorrow to determine if they can operate.

On the bright side (I'm trying here folks...really I am), the solid part of the marrow biopsy came back negative for leukemia. That's one thing less to worry about.

Things I'm conversant in today that I had next to no knowledge of two months ago:
(Disclaimer: I'm not a doctor, so don't take any of this as fact. It's merely my understanding of what's going on with my mother. If you have questions about this kind of stuff, talk to a licensed medical professional.)
1. FAB typing of Acute Myeloid Leukemia. (That's French - American - British typing. It gives the doctors a better idea of a patient's prognosis based on the specific type of leukemia they have.) Types range from M0 to M7. My mother's type is M1 which has an "average" prognosis of 1 in 3 patients being alive after 5 years.
2. The spleen. Here I thought it was a digestive organ. Not even close. It's more of a circulatory and immune system kind of thing. It's more important in children, but is an adult's only line of defense against the germs that cause pneumonia, strep, staph, meningitis and some types of flu. That means if you don't have a spleen, you have to get lots of vaccinations and take antibiotics non-stop for at least two years following your splenectomy.
3. Fusarium and Fusariosis. That's the fungus and the name of the disease that my mother has. Seems like it's mostly found in the soil of house plants, but is also often present in hospital water systems (how or why, I have no idea). Most people who get system infections...well, they die. Those who don't can get cancer from the carcinogenic mycotoxins produced by the Fusarium fungus.
4. Posaconazole. That's the study drug that she's taking right now. It's already been approved for use in Europe, but is still in its third trial phase here in the States. It is a relatively effective antimycotic against fungi that are typically nonresponsive to traditional therapy (Amphotericin, Flucanozole, Miconozole, etc.) By effective, they don't necessarily mean "it cures the fungal infection." If you look at the studies, they call it a successful treatment if there is "complete or partial resolution" of the infection. They also don't have specific information available about the "success" rate against Fusarium.

I really wish I didn't know any of that.

Coasting...

...for a minute.

For the past two months, this blog (as a reflection of my life) has been an absolute roller coaster. I'm not sure how each entry winds up being the polar opposite of the one before it, but for right now I'm going to attempt a neutral post.

I just got done with my lunchtime run. Since my mom got sick, I've been slacking a bit on the physical fitness front. I'm still eating well enough that I continue to lose weight, but without the running I definitely feel like something's missing. I want to use the excuse that things are too stressful, but I know the truth is that running helps me deal with the stress.

So I went out and did it today. (Thanks for the nudge in the right direction, Mike!) I feel great right now, and really hope that I can keep up the motivation. The local Thanksgiving Day Turkey Trot is coming up really quickly, and I'd like to be able to run the whole 5K. Ideally, I'd like to beat the time from my last race, but this late in the game I'll be happy just to finish. I'm going to turn in my race application tomorrow so that I have an added incentive to get going on this.

There...finally an even-keeled entry. That feels much better.

I'm not sure how it's possible...

...but my mother is really doing so much better. On Thursday, at the doctor's advice, I called the local funeral director to let him know that she wouldn't be making it through the weekend. Today, she's back to walking through the halls of the hospital. If you could have seen the looks on the faces of some of the nurses when she walked out of her room the first time...nobody expected her to get better. She still has a long road ahead of her, and the fungal infection is still very severe, but after a few days of utter despair, we've all got a lot more hope that things will work out for the best. I've got a metric ton of work to catch up on, boatloads of emails needing replies, and money is going to be crazy tight for a while...but my mother is getting better. That really makes it all worth while.

I wish I could say that I handled everything maturely this weekend, but I had a couple of lapses in my good grace. I snapped at my sister a few times over trivial things and feel pretty lousy about that. The emotional load has just been so insane. I was the one that had to tell everyone she was going to die. I walked into the hospital on Thursday, not sure how much longer she was going to be cognizant enough to hold a conversation. Preparing myself for the worst and being told that it would take a miracle for her to survive this...that makes it so much harder for me to drop my guard and let my hopes back up. She's not out of the woods yet. Her organs are still very heavily diseased. She still has to stay in remission from the cancer. So many things could go wrong, and I don't know how I'll be able to handle it if they do. Thankfully I have the support of my family, friends, and fiancé to help carry me through.

A few more days

The doctor talked to me at the hospital today. The infection has spread from her liver to her lungs and spleen. One or all of them are going to fail in the next few days. My dad thought she was going to be coming home this weekend. I had to call and tell him she was dying. Then I had to call my sister. It's going to be a rough couple of days.