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!
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