Mundane

Right now I am imagining my friend Barb and her partner Kathy picking out clothes for her to wear to her own funeral.

I am picturing her making decisions about how she wants the whole thing to go down.


On the one hand...what a gift. To have a bit of time, and have a say in it.


On the other hand...fuck. Who would have thought at the age of 55, this is the shit you have to consider?


She will be leaving the hospital soon and going home, with hospice. Probably going home for the last time, to the little house on 40th that she and Kathy have shared for 20 years. I can see Kathy standing in the living room, with Barb sitting on the sofa. Kathy is holding up shirts and Barb saying "yes" or "no" to them, like it was any other occasion where she had to find something to wear.

That's what's in my head.


Barb knows the funeral business. She worked in it for many years. She knows the people who will care for her body after the life has left it. She knows the medical examiner and the funeral directors and the people who cash the checks. She knows the numbers to call for death certificates and various other paperwork required by law. She knows dumb stuff like, what happens to jewelry if you are cremated, and, if you can wear polyester. (I dunno, and, I dunno why I am even curious...)

The mundane stuff of her job, she is now applying to her life in the most unexpected way.


It was the middle of March when the hospitalizations started. By the middle of June it may be over.

An absolutely stunning time-line. I can't imagine what I would do, if it was me. This is the strength of the dying. The calm.

Everyone's a Critic

Last night, my friend Kathy called me to tell me that her mate of 25 years, my college roommate and best friend Barb, was inching closer to death.

What started off as a back-ache was eventually diagnosed as bladder cancer. It then metastasized, and spread to internal organs, affecting her kidneys. She went from a 75% chance of surviving the next five years (if her bladder was removed), to a 5% chance. It was inoperable, and the only treatment they could do was chemo, which would only shrink the tumor enough for other symptoms to be suppressed. She would ultimately never be "cured" of the cancer.

At that point, I adopted a motto of, "we won't know until we know." Obviously the odds were against her, but...somebody has to be in the 5%, so...who knows? 

In my head, my "math" (completely unscientific and involving no math whatsoever) told me she would not be around to see the next presidential election. I thought, that's long enough for all of us who love her to make sure she knows that we do. It's far from a good scenario, but...how many of us die without having that time to connect with the ones we care about?

Yesterday, they discovered that the cancer had expanded again, this time to her stomach. In addition, there was a small perforation in her small intestine which would make chemotherapy impossible.

I feel like...now we know.

Now we know that she would never catch that much-needed break, medically. Since the cancer was discovered, there has been virtually no good news on that front.

Now is the time when you feel the full brunt of the natural human emotion surrounding death--when you are in the inner circle of a person who is dying. Now is the time when reality strikes and people start to freak out a little.

As normal as it is to freak out, it's never been my reaction. 

That's another thing people freak out about.

Ironically, Barb worked in a funeral home right up until she had to stop working. She saw it all the time. She'd say death makes living people crazy--all those questions, from who will pay for the funeral, what will happen at the service, etc. The living feel like they have to duke it out to get what they want out of the deal, and they mostly ignore the wishes of the dead, even if the dead person wrote them down and made them all swear to follow their wishes. As soon as a person dies, it all goes out the window.

Case in point: My husband Jim's father died while we were dating. James Sr, ("Doug" to all of us) had been vocal about his wishes, and had them witnessed and signed. He wanted to be cremated and have his ashes put in the briefcase that he carried for the 40 years he worked in an office. 

How many of his wishes were carried out by his next of kin (his 2nd wife, who was not the mother of his children)? 

Zero. Exactly zero.

His wife and Jim's sister said they wouldn't cremate Doug because he was Catholic and they thought that whole briefcase idea was ridiculous. Jim was pissed off, and, rightfully so. They went against what his father had wanted, but...who was going to stop them? Doug was no longer there to have a say in the matter.

12 years later, Jim died, and basically the same thing happened. I was no longer married to him at the time, so I didn't have a say, and don't envy his daughter having to plan a funeral when she herself wasn't even 25 years old yet, but...that funeral didn't feel like the Jim I knew. 

I think it's rare to have a service that feels like the person you are honoring--maybe it's because we are all a little different to each person we meet. Parents put together a different service than a person's friend might, for example. We know people in different ways and what feels like honoring them to one person, feels tone deaf to another.

When my father passed away, our local small town pastor was left with the task of eulogizing him. Let me start by saying that Don Carr was not a man who attended church. Not a regular Sunday-goer, not an Easter/Christmas goer...just...didn't go. He didn't know Pastor Wayne, and Pastor Wayne didn't really know him. We sat around at the family service with Pastor Wayne at the front of the room, asking us to tell him about my dad. We did. We all had stories. Some of them seemed like they were out of a Smokey and the Bandit movie because that was who my father was, ultimately--a bit of The Bandit with a heaping handful of Rooster Cogburn thrown in there. Cowboy hat, crooked smile, charming as hell, good at what he did, and not interested in your bullshit. (We went to see True Grit on the big screen the other day, and...that's my dad, right there. John Wayne = Don Carr).

The pastor fashioned a decent eulogy for the funeral based on the things we told him at the family service, but the mischievousness was missing, for me. Of course it was missing--the head mischief maker was being uncharacteristically quiet in the box at the front of the room, instead of hanging with us in the pews. He was not a pew sitter to begin with, so I suppose that part is perfectly appropriate.

Maybe the reason I don't like funerals is because they never feel like they should, to me.

*sigh* Everyone's a critic, right?

**Cue flashback to the TV Show Six Feet Under, "Invisible Woman" episode--the single lady, at home with her cat(s), chokes to death on one of those frozen, microwave, "meals for one" in the opening scene. Her body is not found for a while, and, it's not pretty, so they can't do much with it. At her funeral, pre-planned and paid for by the deceased, we hear a recording of Jennifer Holliday belting out "And I'm Telling You I'm Not Going" to a room full of empty pews. Wow...that's...unexpected, but...it's what she wanted, and who knew her better than she, herself? None of the people on her contact list were involved in the planning or even showed up to the funeral. If her friends had gotten involved, I'm sure that song would have gone the way of the Doug's briefcase.**

(I fully expect that Barb's funeral will go like this: Her father, with the money, will make all the decisions and all the speeches, and, like all the decisions he has made "for" her for most of her 55 years, those decisions will have nothing to do with what Barb wants, and will exclude Kathy, entirely.

Mark my words. I am making this prediction, right now, and I'll bet $100 on it to any taker, though I would be happier to lose that bet than win it. Barb wants to be cremated and to have Kathy keep her cremains. My $100 says he'll do a traditional burial in her home town, 250 miles away from Kathy. 

I better be wrong, or that man is going straight to hell.)

At my age, I have been able to avoid going to many funerals. I suppose that will start to change, now, as time ticks on. My mother is nearly 80 and goes to a lot of funerals, unfortunately. If luck holds, I will one day be almost 80 and going to a lot of funerals, too, even though I hate them. They say funerals are for the living, and that is certainly true in that the dead are no longer here to talk about what this whole "life" thing meant to them. If only they could--maybe that would set a few people straight. 

I'm sure somebody would still walk out of the room disappointed.

I have, at this hour, which is less than 24 hours since I heard my best friend's death is imminent, already been told that I'm doing this whole "mourning" thing wrong.

Everyone's a critic.

I am easing into the idea of her not being here anymore. At some point, I'll hit a bump, and have a sob. 

I will probably hit several bumps and have several sobs.

I have a lot of complicated feelings about this that will never be spoken beyond one or two extremely trusted acquaintances. The online community is never going to see me cry. This is not for your consumption.

No wailing or gnashing of teeth. No bedside vigil. I will see her and let her speak her peace, but I will never, ever, speak mine to her. I don't have the right.

I will think of her when I travel, and think of her every time I see The Wizard of Oz, or Gone With The Wind, or Jaws. I do that now, and it won't change when she is gone. I will think of her when Robert and I are sitting at breakfast at Curran's, if I can bring myself to ever have breakfast at Curran's again, since she can't join us there. I will think of her when I'm rummaging through tchotchke shops, or any time I hear Huey Lewis...just like I do now.

These are rather specific ways of mourning and honoring a person and none of them are "wrong", but this is how it comes to pass that funerals are so...unsatisfying. We think of them as a way to say goodbye, and there just *isn't* a way. That person is forever. They live on, long past the time their body is disposed of. There is no "end", no finale. They are there in that song or that movie or that little Tin Man knick-knack you found at that junk shop...until you yourself die and take your memories with you.

We know this, but....we forget, and, we freak out because it all seems so urgent now, and we want to duke it out with people to make sure *our* way of mourning comes out on top.

There is no "timely" death, no "proper" way to mourn, no by-the-book sadness, and there will probably never be a fully satisfying funeral. It is my hope that this transition will be a peaceful one, for Barb and for Kathy. Nothing I, or anyone else, has to say is all that important, right now. I hope everyone just shuts up and listens, because I don't want to have to duke it out with anyone (though, my dad was The Duke, after all, so...you don't want to pick a fight with me...)

Cookies and Ice Cubes

I went to visit Barb and Kathy at their house last night--actually went over to drop off a couple of bags of ice. You know how when you are in the hospital, if you can't eat, one of the few joys you have is the ice? A cup of chipped ice is some kind of weirdly life-affirming sustenance.

She's taking her ice "whole-cube" now, but luckily it's to just cool the drinks.

Not so luckily, drinks is all she can have at the moment, but chewing ice still feels like eating.

I got a tutorial on the medical tools being used to keep my friend alive, and that is why I am posting on the blog instead of on the Go Fund Me page--I wanted to talk about what she is going through and knew that describing it would take up a bit of space.

I want to be clear that I'm not trying to paint a dire picture or anything, but the reality of the situation may be upsetting. It's certainly upsetting to Barb and to Kathy, but, it's a part of the process. Science at work. Tubes come out, tubes going in, bags, buckets, bandages, etc.

Another thing I wish to make clear is this: We didn't start the fundraiser with the idea that we could pay for her treatment or anything lofty like that. What was a $3000 fundraiser became a $10,000 fundraiser after we learned of the seriousness of the medical situation and learned that she would not be returning to work in "a month or two". We are not under the illusion that three, or even ten thousand dollars can buy you a seat at the table when it comes to cancer treatment in the United States. They have sought, and received, help from social services for the medical bill part of the equation. The fundraiser was started because after Barb missed a lot of work due to her illness, they were in danger of losing their house. Of course, she is still not working, and now, Kathy has reached a point at her work where they can no longer pay her on days or hours she misses work while taking care of Barb. This bit is where the fundraiser has taken on a new importance, because getting cut down to one income is one thing--severe, but with adjustments, you can make it. When you are needed at home, as Kathy is, and your being needed means you have *no* income at all during those times, it becomes a scary situation.

Kathy and Barb paid up the mortgage and put a large chunk in their savings account for later use and are doing what they can with the very kind gifts from various sources. More on that, later.

Anyway...on to what is happening.

When you go to Barb and Kathy's house, the first one to greet you is Gibson, the chocolate lab, who is just as confused by the chaos as the human occupants of the house. I wish my boyfriend was with me last night when I went over, because Robert is a bit of a "dog whisperer" (OK, who am I kidding? He prefers dogs to humans.) and he would have sat on the floor and loved that pup to pieces and by the time we left the dog would have been so mellow you'd have thought somebody mixed a sedative in his food. As it was, Robert was not there, and, Gibby is just damn sick of people coming and going from his house all day so he was a bit stressed out. :-( Poor sweetie.

I sat down next to Barb on the sofa and had The Stuff explained to me. So...there is a tube going into her stomach, to supply sustenance (this is a tan-color liquid that must be refrigerated, and comes in bags which hook on to the tube. They deliver it to the house a few days supply at a time). The tan stuff is pumped in, and there is a little back-pack style thing that holds the bag and the pump. Kathy does the work of getting the bags and pump together and going. One of the bags is pumping in from 6PM to 6AM every day--the pump is silent so even though this is happening, a person can still get some rest. There is another bag that is on for 4 hours at a different time of day. As fluids go in, they must also come out eventually, and there is a tube for that, which empties into a container that is dumped out every few hours. This is due to the blockage in her bowel, which was the reason she was most recently hospitalized. The same port that is used for nutrients will eventually be used for chemotherapy, and the chemo will then shrink that blockage, at which point she can have pizza. Or whatever.

I'm going to stop right there because I realize all of this sounds awful. If you are a medical professional, this is probably routine, but while describing it just now I thought...wow, that's pretty heavy. Please know that our patient is not lying weak on a hospital bed, unable to communicate or anything like that. When she called me, her voice was as strong as it has ever been, and she has her sense of humor. She has very good upper body strength, but her legs are quite weak due to the edema and due to lying in a hospital bed for 9 days. This process is not normal for a human body--we MOVE, and those of us who can walk are walking all the time. When we don't do that, we atrophy, and need to work back up to walking. Right now, Barb is considered a "fall risk" patient due to weak legs. She can get around somewhat if someone helps her up, but really isn't allowed to get up by herself. She would empty her own waste container, for example, if she could rise and walk safely, and do lots of other things, but she is sort of stuck on the sofa.

Barb is taking several pain-killers at the moment. They are pills, and basically the only solids she is consuming. When she takes the pills, she has to shut off her "drain" tube for about 45 minutes to allow the meds to get into her system, otherwise they would just drain out with everything else.

All of this is taking a real mental toll, as you can imagine. When I got there last night, she was in a worried state, pulling at tubes and saying "this is my life now" and feeling pretty bummed out about it. This is a normal reaction. It can be very depressing, and a person is really in mourning for the life they once had--they just want it to be the way it was before. You, as a patient, have moments when it seems so useless and you wonder why you bother. That is normal. It is hard for those of us who aren't Barb to hear her having a hard time, and our reactions run the gamut from trying to cheer her up and telling her she has to fight, or, telling her she's gonna beat this thing, to just wanting to hug her and try to show some empathy. I do not know what the "correct" response is. I know two things: A 5% chance of survival over the next five years is shitty odds, and, *somebody* has to be in that 5%. That's all I know. I don't try to sugarcoat a damn thing for her. I just put my arm around her, let her have her emotions, and remind her that we're just moving forward from here. We don't know yet, what will happen.

Meanwhile, Kathy, who is the chief caregiver, is also having her emotions. In February, she was a kitchen manager, and by May she was an almost full-time nurse, AND a kitchen manager, only she was not getting paid for the nurse gig. She is exhausted. While Barb was in the hospital, Kathy called me a lot because she needed to vent, and have someone to talk to, too. Now that Barb is home, she has her focus, but, it's still difficult, of course. When you work, you want to do the best work you can and as long as your employer is good to you, don't want to leave them hanging, but life calls, and you must go. Her employer has been great, but there is only so much any employer is willing to do in this situation. Add to that all of the random housework Barb and Kat used to share that is now 100% Kathy's job, and, you understand why she's exhausted. 

That was the bulk of my visit--learning what was going on, medically. It's a lot, but, it's forward movement. What more can you do, right?

The rest of the time, we talked about how grateful they are for all the help they have received. Kathy showed me long-needed repairs that friends had come over and completed for them, free of change. She told me about how people from her work had given her gift cards for food and other gift cards for various expenses. Obviously, the overwhelming response to the Go Fund Me has been incredibly helpful. We had a bit of a funny time going through literal baskets of stuff that people had put together for Barb. It was mostly snack foods, cookies, nuts etc. Barb is currently on a diet of really watered down malt-o-meal, applesauce and ice, plus the tan-colored goop. As such, Kathy decided I should take those gift snacks home to Robert and there was audible whimpering while Barb watched her cookies being given away!

Don't worry, honey, I'll buy you cookies when this shit is all over. In the meantime, folks, please don't give her any food as a gift--it's just depressing right now. I reminded her that fasting before chemotherapy is a good thing but I think I now owe her something like 10 boxes of Mrs. Fields. A small price to pay.

One last thing: They are working to get more home care for Barb, because, as I mentioned, Kathy is in a difficult position at work at the moment. They will need someone to come over for a little while in the morning, let the dog out, get Barb settled for the day, etc., and hopefully that will happen sooner rather than later. If anyone reading this knows of a resource, please get in touch.

And that's my update. I wanted to paint as clear a picture as possible so everyone understands what is happening now. Obviously, the fundraiser is still active, and all help is appreciated. We're just trying to keep it going, so we welcome all "shares" of the fundraiser. We are incredibly grateful to David Kajganich for using his platform to get the word out--the internet can be a wonderful place, sometimes, and that boost literally saved their house, so things like that do matter! Thanks everyone, for your ongoing support!