Your Friend and Mine

My best friend worked at a funeral home.

It used to be fun for her and for me to reveal that information--she liked the shock value of it, I think. I kinda did, too. Everybody had questions, and I would sit back and watch her answer matter-of-factly, about things that made people wonder.

Yesterday, I attended a funeral at the place where she worked. Spoiler alert: It was her funeral.

It was a weird day.

I had written some notes to say at the podium, but in the middle of the night, instead of sleeping, I was editing my notes in my head based on my experience at the visitation the day before.

Fucking writers, always shuffling things around.

Turns out I blew it in the presentation, anyway, since...I didn't read the notes while I was standing there--I just sort of glanced at them and winged it. I will blame lack of sleep and grief.

If I tell you what I truly think of how it went, I'm gonna piss somebody off. Maybe a few somebodies.

Ah, what the hell...here goes...

You know those Pinterest wedding projects with the signs that say, "Pick a seat not a side"? This was not that. There were sides, and I got a good long look at what my friend Barb has been going through for the last 25 years. She was peacemaker in the middle of a couple of warring factions, each led by...OK, I'll say it: a couple of stubborn jackasses. Barb was stubborn as hell, too, which is why she never fully caved to either side.

Let me back this up a bit--go back the 20-some years to the time Barb informed her parents that her roommate was actually her girlfriend. They didn't see that coming, and, were not all that happy with her choice of partner. Stubborn Barb said "suck it, this is what I'm doing" and...thus began a two decade long saga of her father basically pretending this was all a phase Barb was going through and not including Barb's partner Kathy in, well, anything, while Kathy and Barb made a life of their own, with friends filling in gaps that might have been filled by Dobbses if they had pulled their heads out of their asses some time before she became gravely ill.

OK, now that I've pissed on the Dobbs clan, let's swing to the other side. Kathy, understandably upset after being rejected by Barb's family, crossed her arms and said "fuck those people." She (Kathy) was also dealing with a lot of deep-seated insecurity that made her hold Barb much closer than she needed to. She played some (not all) of those nasty mental tricks desperate people play to get their lovers to stay. If Barb went to see her family, or went anywhere, really, Kathy was in constant contact (a recent memory: Barb and I attended a concert at a nice dinner club and instead of letting her just go out and have an uncomplicated evening, she was calling her for some bullshit, like "I can't get the dog to eat, you need to come home", and when Barb didn't answer her phone, Kathy called MY phone to try the same ploy via a third person. I let it go to voicemail because screw that--you're a grown up and you can deal with the dog for 2 hours).

Now, could these two sides have come together? With effort, yes. I think they could have. It would have taken work, but I believe if they had made the time to get to know each other, Kathy's confidence would have improved if shown real support, and, Master Dobbs would have seen that Kathy is a good-hearted and sensitive person who means no harm.

Key factor here? One Barbara Kaye Dobbs, queen of the innocent little white lie (for the purposes of placating, only! She was not a liar, she just hated people to be upset or disappointed and would fib a little to keep the peace). This is a woman who, I think, never let her parents know she smoked, just to give you an example of the lengths she would go to keep people from information she thought might upset them. She smoked cigarettes for 30 years and basically pretended she didn't while in the presence of her parents. They went on a family vacation to Costa Rica and they were there for a week. She went for a walk and bought smokes off a lady on the beach cuz she was jonesing and didn't dare bring her own stupid cigarettes with her on vacation. Whatever value there was for her in staying her parent's little girl, she clung to it. She told a lot of those little white lies all over the place, to Kathy, to me, to her boss, to whomever--she genuinely hated disappointing people.

Barb would have had to be planning and plotting aggressive peacemaking maneuvers for at least 5 years early in her and Kathy's relationship to have made the uneasy ceasefire between the two sides that would have eventually led to everyone getting along. She would have had to be the one to do it because she was the center of it all. She would have had to say "screw it" and bring Kathy home with her for Christmas and Thanksgiving, and every other visit, and they would have had to act like a couple in full view of her parents, just like they did at home. She...did not do that. Instead, she placated both sides and let them carry on with their stubborn B.S..

For 20 years.

Pause to enter this important disclaimer: All of this is all just a series of instances of people acting on the information they had available to them at the time and while we can look from the outside and say, "That's messed up," we can't say that we haven't made some stupid human error or done things that, in retrospect, contributed to the strife instead of the solution. I have never been in a same-sex relationship or had to come out to my family. I have never had to make something like that work. I would not be able to say I did my best to have a solid relationship with many members of my immediate family. It's just like that--you don't know, usually, until it's too late.

OK, now jump back ahead to March 2019. Barb is diagnosed with bladder cancer. She's scheduled for surgery to remove her bladder. Kathy is there through all of it, and, with the diagnosis, parents swoop in to support their little girl. The surgery happens, and, it's bad news. The cancer has spread and there is now a...95% chance that she won't make it.

Time to come together.

Barb's siblings take the lead and try to salvage whatever is left of their relationship with Kathy and Barb. Barb hurries up and gets paperwork done indicating Kathy is her medical POA, says she wants to get legally married, and makes all kinds of motions indicating she does not want her family stepping in here, when decisions need to be made. Kathy continues to include them in all meetings and decisions, but, ultimately does whatever Barb wants her to do.

Her father spoke up and said he felt left out. Huh...imagine what that must feel like. Oh, that's right, we don't have to imagine, we can just *ask Kathy*, since Barb's family has left her out of pretty much everything for 20 years.

*sigh*

Rapid disease progression, Barb's brothers hang in there, dad makes visits but also demands, thus irritating Kathy, and then, the inevitable.

Now a funeral to plan.

As I mentioned, my best friend worked at a funeral home. She had the paperwork in order that basically left her father out of the decision-making process for her own funeral--she knew what needed to be done. Now...if she had been legally married to a man instead of living with a woman for 25 years, nobody would have even bothered asking what Barb's father wanted because everyone would have recognized that it's not his place. However...legal next of kin is a hell of a thing in the funeral business. If you don't have the paperwork done, a person who has no business planning your funeral ends up planning your funeral.

A tense meeting occurred at the funeral home with the two stubborn jackasses butting heads, and the paperwork prevailing--thank God, because Barb's wishes were pretty clear.

A week later, the viewing...

I walked in, caught sight of one of my best friends, Chrissy, talking to a family member and stuck with her for a while, looking at the picture boards.

Wow, what a life you lived, Barb. So many friends and so many smiling photos. Hundreds of them. But I was to learn that even the picture boards were segregated. There were the "Family" picture boards and the "Kathy" picture boards. I made appearances on both--grab a meal with the Dobbses in some far flung location and they'll take a picture. Owing to the fact that Barb and I had been living in the same city for the last 8 years, we finally had opportunities to hang out and thus, lots of recent photos of us doing stuff around town.

At the viewing, Kathy was "stationed" at the open casket, greeting people and talking to them about Barb. The family was in the entry-way, greeting people as they walked in, with Dad generally avoiding Kathy. To be fair, Kathy *had* ripped him a new one at the planning meeting--I might not want to hang out with her, either.

(This is the part where I tell you the funny anecdote about how when Barb met Kathy, Barb liked her a lot, right away, but was afraid to tell her because, in her words, she thought Kathy might "punch" her. It's cute in retrospect, but gives you a clearer picture of what a tough broad Kathy is.)

I was very nervous to look at Barb. I remember the shock of seeing my father in a casket and how I pretty much lost it at the sight of him. I expected the same to happen when I saw Barb.

It didn't.

She looked so beautiful, and peaceful. Like a fairy princess waiting to be kissed. She also looked incredibly frail--she had lost a lot of weight, and lying there, she looked closer to 90 years old than 55. But she was lovely. What a comfort.

(Of course, it was Barb's friends and co-workers who prepared her body. Barb had chosen exactly who she wanted to pick her up and do the work. A labor of love, for them.)

Kathy and I talked, cried, hugged, laughed, cried some more, hugged some more, and then I let her go because more people wanted to see Barb. I made my presence known to various family members and then Chrissy and I, with her daughter and my boyfriend in tow, made way to the nearest tavern to hoist a glass for Barb.

The next day...funeral.

Everything was the same as the day before, with the exception of the seating. Now, "Reserved" flags hung over the first two rows in the sections near the podium. Parking lot was overflowing--I ended up parking two blocks away and having a little walk. Dobbs family out front, Kathy's camp in the room with the casket until such time as we had to all come together, then the Dobbs gang sat in their section and Kat's group sat in hers. Kathy said I could sit with her, so I took a seat next to her mom in the front row.

The pastor started with, "We are here to say goodbye to your friend and mine" and, I was struck immediately by how we were sitting in a room full of people who did funerals literally every day of the year, but this one was different. I remember Barb telling me about this pastor years ago, about what a neat guy she thought he was, and there he was at the front of the room, having been picked by her to do this.

Exhale.

She was my friend for 34 years and I felt bad for everyone in that place but me.

I felt that we were lucky to have the chance to tell her we loved her before she was gone--you don't always get that chance. The last thing she and I ever did was hug and say "I love you", in that room in the intensive care. A rare gift. Her brother and her Kathy were with her at the end. What a privilege.

The pastor spoke, songs were sung, Kathy spoke and thanked everyone, I spoke (I have written many eulogies but never once delivered one until now), and one other person spoke. I was somewhat surprised that so few people wanted to talk, but I suppose it's not for everyone.

The service wrapped up and everyone was invited to eat in the family room at the funeral home, but Kathy turned to me and said, "I'm not staying," because to her, that meal was a Dobbs thing, and not for her. She told me to take some flowers home, packed up the guest book and left.

A day has passed and as I reflect on what happened, I know that those two sides will never make peace. The one person who could have made it happen is gone now. I wish I could wave a magic wand and make it all OK. I'm sure Barb did, too. These conflicts are not cured by magic, though. Everyone has to want it and everyone has to participate, and that is not likely to happen. The family will have "their" Barb and Kathy will have hers and nobody will admit that they were the same woman. The same complex, wonderful, beautiful, flawed woman. Your friend and mine.

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! 

To The Terror Community:

Sometimes I see a funny/cool thing online and think, “I ❤️ the internet,” and sometimes I see awful/hateful things and think, “I hate the internet.” Today is a ❤️ day on the internet, and let me tell you why:

I woke up this morning to a bunch of Twitter notifications and before I had my first cup of coffee, discovered that a group of people that I do not know were coming to the aid of my friend who has cancer.

I started a fundraiser for Barb a couple of weeks ago because my friend was not able to work and was stuck waiting around for a month before her surgery. At the time, we thought the surgery was going to do most of the heavy lifting getting rid of the cancer.

As we discovered once they had her open, there was a newly formed and inoperable tumor, so, Plan B.

A bit of background: my sister works in cancer research. Her best friend, who is also my friend, is also a cancer researcher, and...by virtue of analyzing things in this way, they have a level of calm about cancer that is probably not shared by most folks. I share that calm, just being close enough to them to get the information in the way they present it. It can seem cold to the casual observer. It's not meant to be, it's just...we see a problem and our brains get to work on the solution. We don't see the word "cancer" and collapse into a puddle, which is the more human thing to do.

When they got the initial diagnosis, Barb and her partner just “lost it”. Perfectly normal to do so. And when Kathy heard the word “inoperable”, yesterday, she lost it again. Perfectly normal.

We all sat with this information marinating over the evening. My researcher friend sent me some stuff in a calm-voiced email, and I was glad to hear that tone...that soothing sound of “OK, here’s what I would do,” coming from an expert that I trust.

And that thing...the immediacy of that information becoming available, was definitely an “ I ❤️ the internet” moment, but it gets better...

My friend is a horror fan. Barb has read every Stephen King , watched endless scary movies with my daughter (who also loves horror), and is mad-addicted to scary TV like The Walking Dead and The Terror. She joined some of their online communities, enjoys talking about them with other fans, and generally just has a ball with it. That’s “I ❤️ the Internet” Number 2. Fans! Worldwide! How great is that?

But today...today was the biggest “I ❤️ the Internet” day of all, because those Twitter notifications I got this morning? They were from those fans. Those fans, those actors, producers and other folks from that community, all saying, “we’d like to help”.

My friend is not internet savvy. She doesn’t Twitter, can manage Facebook, but doesn’t really know how to reach folks on a grand scale using this tool. When it came time to start a fundraiser, she had just me and my (purposely small) Facebook friends group plus Barb and Kat’s even smaller lists. They asked me to try to raise $3000 based on the premise that Barb would be back to work in a month or two and they just needed some temporary help. I started a $4K go fund me and started talking on the internet.

“Talking on the Internet” is a weird skill. I mean I think I suck at it, but it kind of reminds me of the days when I worked in Top 40 radio....you have a 20 second ramp! Be witty and informative, but mostly be quick! Oh no! The singer started singing! Shut up now!

And you just do that over and over again, until everyone knows the Phrase That Pays or whatever.

Good ole radio...

Anyway...

We pulled together a couple thousand dollars relatively quickly and I thought, this is OK. We’ll be OK.

Then Barb’s prognosis went from 75% 5-yr survival rate to 5%. (I keep wanting to retype that because I wish FIVE PERCENT was a fucking typo. It’s not.)

It became clear that she would never go back to work, might not be alive to vote in the 2020 election, would leave her partner of 25 years devastated, and, let’s face it, leave the world a lot less fun because she’s Barb, and we’re just damn lucky to have her.

That’s what I went to bed with last night. I will likely lose my friend, sooner rather than later. Fuck.

What I woke up to was...Twitter notifications. Fans and folks from The Terror saying hi. Helping. Inviting others to help, because Barb is one of them. This is the Internet. This is...fucking beautiful, is it not?

So...I ❤️ the Internet today. I’ll probably hate it later when my asshole cousin posts mean-spirited political memes on Facebook, but right now? Pure gold.

Cool thing about the Internet? I can also use it to send my undying gratitude. To all of you brilliant, gorgeous folks in The Terror community, you make my day. When Barb sees what you did, she’s gonna cry, but it will be good tears for a change, so THANK YOU.

Because Zombies Are Less Scary Than Cancer

The best and worst things happen when you start a crowdfunding campaign to help a friend with a medical-bill-induced financial crisis.

[Disclaimer: I know this is just a thing in the USA, and really nowhere else. In this country, the word "Cancer" is synonymous with the word "bankruptcy". We do our best to squeak on by, and in the process, learn a lot about people. Here are some things I have learned.]

The Best: People who don't even know your friend, who are just good people wanting to help, chip in a buck or two, saying, "I don't know your friend but I see she's important to you." Or people who do know your friend chip in surprisingly large amounts and it's a little overwhelming. Things like that.

The Worst: People become super-judge-y about how money is being used. Don't get me wrong, I'm judge-y too. Very. But what would I do with that money? One dinner out. I can eat at home one night.

• Example: My friends have cable and are worried about getting their cable shut off. I hate cable. Haaaaaaaate cable. Hate-hate. But you know what? My friend is stuck on her sick ass at home alone all damn day, not able to work and bored out of her mind. She's not particularly internet savvy--Netflix is like a super complicated, novel thing to her, and she doesn't know what a Roku is. She's drifting in and out of lucidity (on four different painkillers...good grief...). I'll raise $100 so you can have your one comfort for thirty days, even though I want Comcast to burn to the ground (once innocent employees have left the building, of course). What's it to me? Not a damn thing. Next.

The Other: Wow, it's complicated. I mean, promotion is an easy thing for me--the task of getting the word out about a thing is second nature. I can write that shit all day. I don't have a platform to speak of these days, though. I keep my friends list purposely short on Facebook, assume all my Twitter followers are bots, and apply both of those problems to my Instagram. Probably 20 actual humans I touch base with on a regular basis. I am not yet at the stage where I am tweeting celebrities and asking them to share my Beggin' Click, but...it's on the radar.

Looking at you, Norman Reedus.

Why Norman Reedus? Because my friend has fucking cable, and zombies are her comfort. Zombies are less scary than cancer.

It's the navigation of all of the good and the bad that makes it so complicated. You have people giving you money, and you're so grateful--you can't say enough things to express how grateful you are. At the same time you have people who aren't going to budge, and you wonder how much effort to put into them (probably none is a good amount), and you're strategizing how much or how little to talk about it on your Facebook or your Twitter.

What's the tipping point of annoyance in your small circle of acquaintances? If you go past the tipping point, what will happen? Lifetime ban from social media?

I should be so lucky.

And then you have the people who feel like they need to give you a little sermon before telling you no. The ones who don't agree with your friend's "lifestyle" (a 25+ year stable relationship with one person) because she is gay, or that ones that question how they will spend the money because they don't seem particularly good with money.

Let's not forget the ones who, since nothing bad has ever happened to them, personally, figure your friend should have just planned better so they would be ready for the upheaval that cancer brings.

Sure.  Should have just...planned better.

Meanwhile, my friend and her partner are about to lose the house, so her (wealthy) parents sent her a greeting card saying they "feel so helpless" and tucked in a $50 gift card to Olive Garden, because that's how fucking tone deaf they are.

It's weird.

Money is weird, people are weird, and people are really fucking weird about money.

PS: Don't get sick.

Anyway...someday my friend and her partner are going to have themselves a fine, celebratory meal at Olive Garden. We'll laugh about her crazy parents and there will be much eye rolling and probably wine and stuff. Until then...let's see if my bullshit can pull them through.

You know the drill...help if you can, and thank you, fair human. Or zombie. Either/or. I don't judge.

Remember That Old Cartoon With a Picture of a Tombstone With the Inscription, "I told you I was sick!"?

This morning, I drove my best friend to an "urgent medical care visit". Those are the words I texted my boss to tell him I would be a little late.

"Urgent medical care visit" should be taken to mean, "my friend has no insurance, no primary physician, no money, and gets her medical care from the urgent care and/or Emergency Room, depending on the severity of the situation in question."

The fact that I drove her would indicate it's serious, and the place we went to was the ER.


There is so much to talk about, here. Just soooo much.


Beyond the cost of care in this country, there is the issue of medical literacy, and the fact that my friend is the caretaker in her household. She also has an unsympathetic employer.

If you are wondering how it got to "serious", please re-read that last last sentence.

For months, she has been experiencing pain. MONTHS. But her unsympathetic boss needed her. so she took pills and went to work, and her partner needed her, so she hunched over the sink and washed the stupid dishes.

Wanna know why she has no insurance? Well, they needed the money for day to day living, so, no, her needs were secondary and would have to wait until they were doing better. (Note: she is in a same sex, unmarried household and I'm not sure if her partner has insurance or if the partner's employer offers to domestic partners, I just know my friend doesn't have medical insurance)

No Primary Care Physician? Same. Can't be all "going to the doctor for my annual check-up/pap/mammogram" because who the hell has that kind of time and money? That's where they're at. These are real choices that real people are making every day.


Now...as I said, there is a lot to unpack here. My friend is not blameless. I have been hassling her for a while now to get health insurance. It's offered at her work, it's just so damned expensive and the combination of Sticker Shock and I'm Not Worthy has kept her from getting health insurance. I have NO idea what they were doing regarding the "individual mandate" requiring people to get health insurance, but, even though she has been at the same job for well over 10 years, she has not purchased a health insurance plan. That's Issue Number One. I completely understand WHY she doesn't want to shell out the money because it's a lot for an hourly worker. I just wish she would.

It's...a luxury item, health insurance. But it's like you are a person who doesn't carry a purse but you buy a new Louis Vuitton bag every couple months. That's how she looks at it, and how a lot of people do (and...they're not wrong on the price point). It's just something that doesn't seem practical, until...one day you are forced to produce the financial equivalent of a couple dozen Louis Vuitton bags all in one day instead of buying them slowly over time. My friend would have a lot less anxiety about seeking care if she knew, for example, that if she had insurance, even the low cost insurance, that she would get an annual checkup included with that every year. How valuable are annual visits? Very. You and the doctor have those conversations, and things come up, and you say something like, "well, I don't think it's anything, but it hurts when I _____" and your doctor says, "That's interesting. I would like to test you for ____" and you discover a very treatable condition that's a 5 dollar prescription instead of a 5 THOUSAND dollar ER visit down the road.

Spend the savings on a Louis Vuitton bag.


Issue Number 2. Urgent Care, ER, urgent care, ER, urgent care, ER, blah, blah, blah, on an endless cycle of trying to put out a raging fire via bucket brigade. If you have a Primary Care Physician, and you see them once a year, there is a nice record of your stats somewhere, someone to coordinate care, and a less expensive place to go when (still little) things pop up.

"I really should see someone for that. Oh wait! I have someone!" That doesn't make going to the doctor less of a pain-in-the wherever-your-pain-is, but it's less painful than the ER bill.


Issue Number 3, the elephant in the room: It's expensive. Getting sick in this country can and will bankrupt you. I think we all know this and don't need to go into too much detail but if you want to know a big part of the reason why my friend delayed care until she absolutely could not stand the pain another minute, you can look to the fact that to her, even the lower price points are too much--can't afford it, period.


Now, we're going to talk about medical literacy, and we'll call it Issue Number 4. Little, dumb stuff like, if you get antibiotics, take ALL of your antibiotics, even after you start to feel better. Or, great big stuff, like, every growth/mass/shadow on an image isn't cancer, and even if it is, many of them are "easily" treatable and have good survival rates. There is a lot of "I don't want to know" going on in this situation, and, honestly, a lot of denial. My friend has it in her mind that this is a "They're just gonna figure it out and give me a pill" kind of illness, when in reality, based on what I know about the situation, the medicine required may be surgical in nature. While I am personally not afraid of surgery, the thought of it utterly terrifies her. There are a multitude of complicated reasons why it's frightening to her. Some of them are legitimate, some not, but you can bet front and center is the price tag.

Issue Number 5: Why do you keep missing work? Your department is a mess! That's an actual thing that was texted to my friend. "(Department) is a mess!" like it's her fault. My friend doesn't run the place, is not a manager of people and does not decide who covers things in anyone's absence--that's the manager. Guess who complained about the department being a mess? That manager. The one who is in charge of that and all of the other departments. So first of all, fuck that bitch. Second, my friend is a prime example of a worker with an employer who does not give a rats ass about them--hourly wage earner who, if she doesn't work, doesn't get paid, even after years and years of loyalty. No breaks for you, not a hint of compassion. She has a boss who, instead of saying "sorry this is happening" is texting my friend the company attendance policy and trying to shame her for calling in sick "wrong" while she was sitting in the passenger seat of my car on the way to the emergency room. Nobody gives a fuck about the attendance policy when they are crying and hugging me at a stoplight on the way to the hospital, Karen, so save it.

Also, fuck that bitch.

Meanwhile, my boss? A notorious, cranky, curmudgeon? My boss? When I told him I was going to be late because I was running my friend to the ER, he said, "Drive safe and thank you for helping others in need."

Now...my employer would replace me in about 5.26 days if need be, but at least they are not full-on pricks about it in the interim.

And finally....lets talk about what I personally think is the *other* elephant in the room, and that is...women don't take care of themselves. Women are taking care of others and when the shit hits us, we're all, "It's nothing," and you know what? The more you do that, the more people will take advantage of that. The more you work through pain, emotional or physical, the more your boss or your partner is gonna take advantage, and I don't say this to mean that they all do it on purpose, it's just a combination of women not wanting to be a bother and women wanting to be strong for their families and take care of their mates/children and those other individuals just riding along because for them, everything is fine. Everything is fine because we never let on that it's not until it's really, really bad. We're just like that. We joke around about "man flu" when a guy has a cold and goes to bed for three days, when what we should really being doing is exactly what our mates do. Oh, they may not be very good at taking care of us, or not as good as we are at taking care of them, but they will manage. Stop acting like you're the only one who can feed the household, or clean the kitchen. Take your rest when you need it! Let them crow all they want--if they're the type to complain about you being sick, then they'll find something to complain about when you're well, too--might as well go to the doctor, since they're going to complain, anyway...

So...an update. Since I started writing this, my friend has been admitted to a hospital. Bad news, right? Well, in this case, it's not. In this case, it's validation that this illness should be taken seriously, by her boss, her mate, and by my friend, too.

She's gonna half to sit there and...LET PEOPLE TAKE CARE OF HER.

The horror.

She's going to be on happy pain relievers and won't be able to think about how much it's going to cost her.

Good.

She's going to have medical staff tell her mate how to take care of her, and friends like me sending her flowers.

She's going to have a nice "I told you I was sick!" moment with her asshole manager.

Right now, that's my favorite part of this. Because fuck that bitch.