Thursday, July 22, 2010

A Moment of Levity

Should I let my friend know that I think maybe her Facebook status could use some editing? I hope it needs some editing. Otherwise, how can I stay friends with someone who supports breast cancer?

[Name Removed to Protect the Innocent] Please help! I will be walking 60 miles in the Komen 3 day to support breast cancer. So far I have raised over $800, but I still need over $1,000 to reach my goal. No donation is too small! To donate there is a link on my facebook page or go to www.the3day.org, click donate, search for a participant, and then type in my name. Thanks so much!

Monday, July 19, 2010

If You Ask Me How I Am, I Will Cry

Sounds dramatic, I know. But it's true. Right now, if you talk to me about the weather, or parenting, or traffic, I will happily chat along with you. I may even appear to be carefree. But the sadness, the worry, the grief is lurking just under the surface. Scratch at it a little with an innocent question like, "How are you?" or with a expression of concern for me, and the tears will well up like Jed Clampett's crude.

So, if you care about me, please be rude to me so that I don't have to embarass myself with quavery voice.

Sunday, July 18, 2010

Live from Cancer-ville

Mom's diagnosis is the same. I appreciate that the doctors were so blunt with the worst-case-scenario from the outset of all of this. Stage IV lung cancer that has metastasized in the brain. Some doctor in the future will ask me about my family medical history for my medical record, and this will be my answer for how my mother died. That is awful to contemplate, so I don't. Not really.

She's started chemotherapy, though I'm not entirely sure that she really wanted it. I think Mom always knew that her endgame would go this way, and to prepare, she told each of her seven children -- in separate, one-on-one conversations -- that if she were ever diagnosed with a terminal illness, she wouldn't fight it with aggressive treatments. She said she'd just give into it and live the rest of her days as comfortably as possible.

Yet in our family meeting she said, "Let's do it," when asked if she wanted to undergo a round of chemotherapy. A family meeting, for the uninitiated, is an awful, medical all-cards-on-the-table meeting wherein the doctors inform loved ones, in the presence of the person who is ill, what the treatment options and recommendations are. I call it awful because it has all the hallmarks of a business meeting -- agenda, packets of information, next steps -- but the meeting is about your mother's life. So you hear numbers, percentages and time frames and things like that, but it's not about whether your company is in the black. It's about whether your Mom is going to make it to her next birthday.

But you can have an idea of how you want to handle these things and change your mind about it, right? When you're prepping to have a baby they tell you that you shouldn't firmly decide whether or not to have an epidural because you can't really know for sure how you'll feel when you're in the thick of labor. So I have to think this is true when battling cancer.

I suppose I'm mixed up about this because the lesions in Mom's brain are causing disorientation, forgetfulness, and things like that. So, for lack of a better way to put it, I don't know if Mom's agreement to undergo chemotherapy is HER decision, or the lesions'. I don't know that someone should be included on her medical decisions when she sometimes thinks it's 2003 and she's in the hospital for a heart attack.

Guess that's all water under the bridge, though, because she's completed her first round of chemotherapy.

Since she's done with that, she was discharged from the hospital. They were recommending that she go to an inpatient physical therapy rehab center. The Army of Brain Lesions have caused weakness and a lack of coordination, which caused her to fall at the house in the middle of the night last Monday, which in resulted in a banged-up knee that swelled to the size of a volleyball. All of this adds up to need to learn how to work the body she's got right now. But, Mom was desperate to come home, and Dad is desperate to do right by her and follow her wishes as best he can, so they selected an alternate option that the hospital outlined: discharge Mom to home care, and send a nurse and a physical therapist to her home three times per week, for an hour at a time.

This has my siblings and me very, very worried. My father is not capable of doing this on his own, and we of course want to help, but I don't know if we have the facility for this kind of thing. He has a decent chunk of change saved up, but I'm not sure if he can afford long-term 24/7 care, which, frankly, is the only thing that would ease my mind and would also satisfy my mother's desire to be home.

Today, we have another family meeting among the kids to divvy up responsibilities -- helping my father, getting Mom to-and-from appointments, making sure the prescriptions get filled, and things like that. I feel incredibly, outrageously lucky to have family -- my brothers, their wives, my sisters, my brother-in-law -- who can help with this kind of thing.  They are all such wonderful people, all with the best hearts.I appreciate this beyond all measure, really. 

I also feel very lucky to be geographically close to my mother. One of my sisters lives abroad, and it's crushing her soul not to be able to be here to see Mom, help her, talk to her. I recognize that our situation is better than most in terms of time, and money, and support. Cold comfort. It all still sucks though. A lot.

Friday, July 09, 2010

Raw

If you came here looking for WWE information, hie the here.

Otherwise, the title describes how I'm feeling right now. My mother is sick. Like really, really sick. And it's all shocking, but not really. Maybe this is how Cassandra felt when things she foresaw came true?

Let me explain.

In late April, my Mom was diagnosed with pneumonia. Not the normal time of year for that sort of thing, but it happens. She took antibiotics, she got better, done. In the second week of June, she and my father flew to England to visit my sister. The first week of the visit, she was her normal self. But the second week of the visit, she started slowing down, had shortness of breath, and basically took to her bed. She was fairly certain that it was pneumonia again, but kept pooh-poohing my sister's request that she go see a doctor. On the third day -- this would have been June 28, I think -- of my mother being completely wiped out, my sister and brother-in-law basically forced her to go to the doctor in England. He clinically diagnosed her with pneumonia, but urged her to have a chest x-ray when she returned to the States.

Why?

Because my mother is a smoker. For fifty years, she's been a smoker. Usually a pack a day. I've always been grossed out by the habit. Have you ever been around and ashtray while you're trying to enjoy Saturday morning cartoons? I have. And when I flounced onto Mom's comfy recliner, it would knock into the end table on which the ashtray sat, and specks of blue ash would mushroom up and out of the ashtray. Yuck.

So, this doctor was telling her that it could be more than pneumonia. Red flag. No, CRIMSON flag. VERMILION flag.

They flew home on June 30. I can only imagine what a nightmare that was for her. Unable to breathe properly, weak, and cramped into a coach seat on a transatlantic flight. My older brother picked them up from the airport and got them home.  He called me to reassure me that he'd gotten them, but I could hear her saying things like, "What are you doing in New York?" in the background.  That must have been so awful for him.

The next day, Mom was seen by her general practitioner, who took a chest x-ray. But, the results wouldn't be back until after the holiday weekend. They went home with fresh prescriptions, and Mom retired to the bed again. She was up and about a bit throughout the weekend, paying bills, eating a little here and there. So it seemed like she was on the mend, little by little.

Then she fell.

In the middle of the night on Monday night, she took a spill. My father found her in the bathroom and tried to help her up as best he could. He's seventy-nine and has a history of back problems, so it was not an easy endeavour. For most of Tuesday, she was in bed, and very disoriented. My husband and I had already decided to visit since it was on the way home after our holiday weekend visiting his parents. Luckily, we'd decided to leave our three children with my in-laws for an extended visit. Why luckily?

Because kids can get scared when you have paramedics tromping through the house.

We called an ambulance. As soon as I saw my mother, I knew she had to go to the hospital. One of my older brothers, got there a few minutes after us and agreed. Thank God he was there. My Dad didn't know what to do, and I would have only been playacting if I expressed any idea of what to do. 


Mom couldn't move. She'd wrenched her knee so badly, she couldn't support her own weight and was pretty disoriented. We helped her into a wheelchair that was leftover from my grandparents' convalescence and rolled her into the family room. The paramedics arrived very quickly and performed an exam of her. It was pretty clear that they were thinking she'd had a stroke. So was I, frankly.

I rode with Mom in the ambulance, but I had to ride in the front seat. It was a really long ride. We caught EVERY red light on the way, and the paramedic who was driving didn't turn on the siren. She wasn't an EMERGENCY emergency, I guess. He was a nice enough guy, and tried to make conversation. When I said we'd just gotten back from Cleveland, he decided I must be from Cleveland. This meant that for the ten minutes it took to get to the hospital, he would periodically ask me how I liked living in Cleveland, and whether I liked the Ravens. After the second or third correction, I just went with it and waxed poetically about the weather in Cleveland as compared to the muggy soup that is Baltimore's atmosphere.

Did I mention that it was like 105 degrees that day?

Once at the E.R., Mom's gurney was parked near the automatic doors. There was no room at the inn, which I found frustrating. I mean, if the hospital says it's receiving ER patients, shouldn't it, you know, RECEIVE them? But I was trying to be patient. Mom, though, kept fidgeting, pulling at her I.D. bracelet, wanting to get up. The automatic doors kept opening and closing, opening and closing. Elderly people in gurneys were strewn about the hallways, and it was so sad to see that they had no one with them. That firmed up my resolve that I wouldn't leave my mother's side. There was a young woman near us who was being questioned by a paramedic. He kept telling her that she was slurring her words, that they found a lot of mostly empty pill bottles, so they can only conclude that she had overdosed on something.

I couldn't help thinking that I SURE there's a HIPAA violation in there somewhere.

At one point my Mom said she had to go to the bathroom. She's had seven children, so the muscles Down There aren't super strong. Honestly, she knows where every public or store bathroom is within a five mile radius of her home. But she couldn't do it on her own, so I and a paramedic had to help her go. I literally carried my mother. It was not dissimilar to my daughter's potty-training routine, so thank goodness I had that under my belt.

I stayed with her until we had a room -- or rather an area -- in the E.R. Dad came back at that point. Any time there was an update, I'd text it to my brother and husband in the waiting room, and they would relay the information to our other family members. By that time, another of my brothers, we'll call him, had joined them in the waiting room. Doctors would periodically visit to examine her. We answered the same questions many, many times. My Dad offered too much information. Not inappropriate information. Just unnecessary. Like how he thinks that he might have caused some of the damage with Mom's knee because he has a history of sacroiliac problems, so he doesn't think he helped her up from the bathroom floor very well. And the bathroom, by the way, is a very small space. He was so, so overwhelmed.

Based on what they were asking, it seemed like they too thought Mom had a stroke. They recommended another chest x-ray, a head CT, and possibly a lumbar puncture. These things would tell us about pneumonia, stroke or concussion, and maybe meningitis. Dad and I awkwardly trying to pass the time while I furiously texted information to my brothers and husband.

Imagine my surprise when a beautiful curly-haired doctor came back and told us that based on what they saw with the chest x-ray and the head CT, that they believed Mom had lung cancer that had metastisized in the brain. This was four hours into our stay at the E.R.

Mom seemed to understand what was said. But I wasn't sure, because she wasn't wailing or gnashing her teeth, you know? Then another doctor came back to talk to her a bit more, and he asked if she understood what was going on. She looked at him and tearfully said, "I'm dying." The doctor seemed to slip out of Medical Man mode for a moment and said, "And I'm very sorry about that." Then he explained that she would be admitted, and that they'd need to do further scans and testing the next day. But that the average life expectancy is about five months.

Once they had an idea of what was going on, they could admit her. After she was nestled into her room, we all went home. I wanted to stay because I knew that she would be confused and lonely, but they said it wasn't allowed in her unit, the Intermediary Care Unit, which is a step down from Intensive Care.

There was weeping. All of the weeping I wanted to do at various points in the previous five hours came out at that point. I was trying to be strong for my Dad and my mother, but when it was just my husband and me... Well, he knows that I'm about as tough as dandelion that's gone to seed. So I could just let go.

I haven't cried like that for a long, long time.

The next day was, if possible, harder than the previous day. My mother had gone from the sharp tack that maintains the bills, the house, the everything, to someone who didn't know she was in the hospital, or why, and only wanted to go home. There were some hallucinations, as well. They did another CT to see if the cancer has spread anyhwere else, and to help guide them during the biopsy. Again, I spent the better part of the visiting hours in her shared room with my Dad.

Shared rooms, by the way? They stink.

Mom's roomate was hard of hearing, and during that second day, the first in the IMC, this woman's visitors would need to shout to be heard. Since my mother was easily distracted and suffering swollen brain dementia, she thought they were talking to her. And my mother is nothing if not social, so she'd talk back. She was making me laugh, because she'd kind of roll her eyes as if to say, "Jeez, these people clearly do NOT know up from down since they are talking to me like they know me."

We didn't get the results of the CT scan until yesterday, July 8. They said that based on what they saw, they weren't going to do just a biopsy, but something called a bronchoscopy. This will be done today, hopefully. They changed what they thought needed to be done because the mass on her lung is apparently really close to her airway, which has in turn partially collapsed the lung. This procedure will help clear the airway and deal with those problems, and at the same time they should be able to get a tissue sample to biopsy. So, better to do two procedures at once than to put her through two separate procedures. They may still have to do a regular thoracic biopsy if this doesn't produce results.

Ugh. Words that are now a part of my every day vernacular are ugly, lumpy, greco-latin words.

Visiting hours start in a couple of hours, so I'll head over then. I don't know what today will bring. Yesterday her cancer specialist doc told us that she MIGHT be able to be discharged this weekend and start radiation therapy for her brain lesions next week. That brings up a whole host of other realities that need to be dealt with, like how best to get her to and from and to make their house as comfy as possible for her.

And me? Well, I'm pretty crushed. I can't wrap my head around the fact that I need to start doing what I can to, for lack of a better way to express it, wrap up this mother-daughter relationship. I thought I'd have more time. That sounds stupid, doesn't it? I've already gotten more time with my mother than she had with hers. She's seen me grow into an adult, and succeed, and settle into a beautiful home and marry a wonderful man and have gorgeous, friendly children. And then I dissolve because my younger two probably won't remember her and how much she loved them, how she calls after every pediatrician appointment to find out how it went. And that I can't call her to ask if she'll watch them because daycare is closed, or if she could give me the recipe for her potato salad.

Oh, God, potato salad is going to make me cry for the rest of my life.

So that's where I am right now. We don't know everything about this THING that is eating her from the inside out, this thing that she opened the door to (most likely) because of a habit that was cool and harmless when she came of age. But based on educated guesses and likelihoods and averages, I'll be lucky beyond all measure if she can see my baby turn one in January.