Monday, March 30, 2009

Living with Dying: Emotionally Crazy

Originally posted on MySpace,
Views (127) · Edit Mar 30, 2009

Last week was an odd one for us. At least emotionally. Let me start with some background.

Harriett is a very private person. As long as we have been friends, as long as we have shared a home, there are thousands of things I don’t really know about her. I think she probably knows just about everything that can be known about me, but she keeps her ghosts well guarded. And that privacy can be taken right into everyday living. She rarely shares her feelings or her fears with me. When she does it’s such a shock that I break down as much as she does and that doesn’t make for such a supportive friend.

Last week was a “doctor’s appointment” week. Forgive me if this is repetitive, but the oncologist only sees Harriett because Harriett has asked to continue seeing her. Since Harriett is in hospice care, she doesn’t receive any more curative treatments. If she were to have a heart attack right in front of me, my instructions are to call the hospice workers, not 911. I am pretty sure Harriett doesn’t really understand all that, but she feels better to get the check up every couple of weeks and the doctor is kind enough to accommodate her. So every couple of weeks I wrestle her out of the house and into the car, to & from and into & out of the doctor office, back home, into the house and into her chair. It physically exhausts her.

Harriett and Mark have an antagonistic relationship. She LOVES to give him shit. Really. LOVES IT! When he’s out of earshot she gloats over it. So he gives her shit right back, tempered with some sort of gruff gentleness, if that can be said. I try to stay out of their “stuff” and leave them to the relationship they’ve created. If I do say something to either of them, it seems to give them fuel for their own opinions, so keeping my mouth shut and watching in amusement is more or less my position.

Last week started off pretty normal. The daily routine was the same and Harriett didn’t have much to say or contribute to much. Her aide and nurse made their visits, which is always good. They are so upbeat and chatty, it really gives Harriett a boost when they come. Thursday we went to the doctor and got a reasonably clean bill of health. Nothing much has changed… Harriett weighs 100 pounds with her gym suit, boots, and heavy coat on. She looks good compared to when she was on chemo. She’s got a bit more energy. I thought it all went well.

She mentioned something to me on the way home about the nurse calling her a “fighter.” I thought, “well, that’s good, because you are!” What I didn’t realize is that Harriett had added her own twist to it. Her interpretation was that they were saying they were surprised she wasn’t dead, that it’s amazing how much she’s still fighting. That hadn’t even occurred to me at the time. I have my own issues with “words of encouragement” meaning something different to me from what was intended, so I wish now I would have realized then what she was telling me.

Later that evening Mark was asking her about the appointment and she started in on him. At some point I asked, “Okay, Harriett, can I laugh at him now?” To this she fell apart and replied that we think she likes sitting in that chair all day and don’t we know she’d rather be dead than not be able to do anything for herself. She went on like that, crying and yelling at us and all I could do was sit in silence and cry myself. It appeared that the dam had cracked. She went on about how we all treat her like she’s dying and how much she hates it. In the course of this was when it became clear to us what “being a fighter” meant to her. Then she became upset with herself for breaking down and making us uncomfortable. She asked the question that comes up occasionally, “why don’t you just put me in the street?”

Ultimately Mark and I were both glad that it had happened. She holds everything inside and sooner or later she has to let it out. Again, I don’t think she understands that. She kept saying that she must need a stronger anti-depressant. No, being on an anti-depressant doesn’t mean “happy all the time.” It means being able to manage your despair with some sort of sanity and even then, there are times when you need to break down and let it out. That time was WAY overdue!

What happens after the cork has blown of the bottle? Everything comes back to some sort of equilibrium and we march on a little bit happier. That’s the up side. But “happy” to Harriett means chatty and I am not a chatty person to those I live in close proximity to on a daily basis. And I can deal much better with the physical aspects of terminal illness than I can emotional aspects. I won’t say give me the poopy mess any day… I really don’t like that either. But at least I can clean that up and light a few candles and spray the air and it’s done. But the genie bottle of emotions isn’t ever going to go away. It sits there quietly until something jars the cork and then boom! It’s sort of like that time bomb game in which you pass around the bomb and hope it doesn’t go ka-pow in your hands. But this is sort of like playing the game solo. Ka-Pow. It’s going to be a little while but I know it’s coming again.

Wednesday, March 25, 2009

Living with Dying: Insert Primal Scream Here


Betsy Gully
Post a comment...


    Those feelings of depression you describe are SO familiar...thank heaven for Wellbutrin! Sometimes it feels like having a "flu of the soul". I think it's often best to treat those the same way you would a physical flu.... put yourself to bed, rest up, and don't ask any more of yourself than you absolutely have to. I know it can be hard to take care of yourself the way you should while you're responsible for taking care of others. But ultimately I think it helps both you and them if you give yourself a break now and then. Even if that means enlisting outside help. Thinking of you. {{{{Hugs}}}}

    2 years ago

Sunday, March 22, 2009

Living with Dying: Who's Life is this Anyway?

Originally posted on MySpace, Mar 22, 2009

I had a Tastefully Simple party last Thursday night. My biggest concern when I booked it was, would I be able to invite enough people to make it worthwhile? I never once thought about Harriett or how comfortable/uncomfortable she'd be. Not until the day of.

The party was successful. We had fun, served Blueberry Pomegranate Margaritas, ate beer bread with all kinds of dips, tasted sauces and jams, cheese balls, cakes and cookies. It all went well and I met some people I didn't know before.

But the entire evening Harriett looked much less than happy. She was greeted by virtually everyone who came. If I was busy and didn't get over to introduce them, most guests introduced themselves to her. But she had very little to say or add and basically looked grumpy. After most of the guests left I helped her up and to bed. She let me know she had waited because she might be wet. That would have embarrassed her. I can't blame her for that. It would embarrass me, too, if I were in her position.

Now I am not sure what I think about the whole thing. We have our weekly scrap date and she seems fine with that. Just one other person, Susan, who she enjoys and has accepted into her small circle of friends. But if I expand on the scrap day and have more people come, am I creating a weekly situation she will be uncomfortable with? I know I have to have my time and do things that are for me, but there are times that it's just not worth the negative feelings I may end up facing. And silly me, I don't feel like asking permission to arrange for an event in my own home.

To be very honest it's not that big a deal to me. I inherited the "hermit" gene from my mother and I am very comfortable staying at home without a lot of outside stimulation. I can't go it forever, but I can do pretty well. The hospice nurse seemed to get a little frustrated with me the other day when I said I was doing okay. We'd had one conversation wherein I wasn't doing so well and I think she thought I should still be in that place. But honestly, if I have the opportunity but decide to stay home, that is almost as good as going out. Bottom line, it's my decision to stay or go.

So why am I thinking so much about this party incident? There may be some guilt inovlved in that I didn't even think about Harriett when I planned it. Or maybe some resentment that I should have thought about her. Perhaps I was a bit disappointed that she appeared to be so grumpy. But then again, 1) that is her usual expression, and 2) she did have more pain than usual that evening.

I think if I boil off all the extraneous stuff, what I get is that I just didn't want to spend my life this way. For more years than I can count, I wished I was a stay at home mom. We lived in-city in Seattle, not a cheap place to live. We needed two incomes and I really was okay with that. But I did envy moms who were at home during the day. Eventually I worked out a plan where I worked part time and was home before and after school with my girls. So, in essence, I was there for them as if I didn't work outside the home.

When we moved to Sandy and Mom and Harriett moved with us, I didn't start working right away. I called myself a Stay At Home Daughter and took care of my mom. When I couldn't stand being at home all the time, Harriett picked up the slack and I got a job. As I've already written, I quit that job when Harriett was diagnosed with her cancer.

I know it's not really true but I feel like all my choices have been taken away. I can't just decide I want to go to work and do it. I can't need an item from the store and drop everything to go get it. Spend an afternoon at Starbucks with a good book on a whim? No can do. Go site-seeing in my new state? Not without some serious planning. Not even on the weekends when most people can just blow off whatever "needs-to-be-done" and just go.

I do have choices, though. The choice I made was to be by my friend. To be the family she doesn't have and to make sure she is loved and cared for and not living on the street.

But some days I just want to say, "I gave up my life for this?" Knowing Harriett doesn't have a choice doesn't make my choice any easier. Gah. Forgive me.

Thursday, March 12, 2009

Living with Dying: The Diagnosis

Originally published on MySpace, Mar 12, 2009

I find myself wanting to write and do a flurry of blogs and then nothing. It's like I get it all out, or enough to help settle my soul, and then I don't feel the need for a while. But I don't want to drop the ball with this blog. I know I have a whole lot more to write about. So if this feels a little forced... well, it is. It's not welling up in me shouting to be let out today, but I am giving it a little push instead.

I wanted to title this "The Beginning" but it's really not the beginning at all. I don't know when the beginning was and someday I am going to explore that. Let me do this, however, let me show you that I think the beginning was at least more than 2 years prior to the diagnosis.

This photo shows Harriett in July of 2005 when we were unpacking our house in Utah. I think she already shows signs of the cancer, as her right breast appears larger than the left. I know this is not an uncommon situation, but knowing how completely full of cancer/tumors the breast was at diagnosis, I sincerely believe it was well into development at this time.

It really doesn't matter even in the slightest. Nothing I can note or do or say will ever change what has happened. Nothing will make the disease go away or change what we've been through. Especially what Harriett has been through.

When we moved to Utah in July of 2005 we began, for the first time, our life as an extended family unit. My mother made the move with us so I could continue to be close to her and care for her. Initially we expected to find her an assisted living apartment. But as we settled into our new home it appeared that she could navigate our halls, the bathroom was large worked well for her and we had a step-in shower in our master bath. With a few simple tweaks we could accomodate her. I am so fortunate to have a husband that agreed to those living arrangements, and so she stayed. At the same time, several things made it difficult for Harriett to look for work in our new location so as a matter of convenience, she began caring for Mom. All in all it was a great plan and we stuck to it for a couple of years, allowing me to go back to work outside the home.

As the holidays approached in 2007 Harriett began complaining about her health. She felt sick quite often and felt less and less able to care for Mom. I wasn't very sympathetic and felt she was just tired of doing what she was doing it was her way of forcing me to take more responsibility for Mom's care. I felt annoyed. I didn't see Harriett being sick, I only knew what she told me. Eventually the girls began complaining about the downstairs bathroom, that Harriett wasn't cleaning up after herself and it was filthy. I could no longer be an ostrich, I had to look at the situation more seriously. Christmas passed and we started the new year. I began to do more and more for Mom as Harriett did less and less, eventually only doing what she could when I was at work.

Harriett had been losing weight for quite some time. We originally thought it was cool - what overweight person doesn't think losing weight without any effort isn't cool? Then, she had her teeth pulled, jaw bone trimmed and dentures made and fitted.* It was quite an ordeal and major oral surgery, and of course it explained why the weight was dropping, in our minds. At this point we just were not concerned about the weight loss.

By April it was apparent that something was seriously wrong. Harriett didn't keep much if any food down and she was having severe stomach pain. Although we had offered on many occasions to take her to the doctor, she'd always refused... until now. That in and of itself told us how very seriously ill she was. Alyssa had gall bladder surgery just prior to this and we suspected maybe Harriett's stomach pain was similar. We hoped.

I took Harriett to the ER toward the end of April. They looked her over and eventually said they were going to admit her to the hospital. They did every kind of test on her and in the end hospitalized her for a full week. On April 28, 2008 she was given the news. She has breast cancer. The cancer has also spread to her lymph nodes (bad) and into her bones. There was concern that it had also spread into her brain and that could be what was causing the nausea and vomiting. Fortunately, that was ruled out. On that day I called my boss and quit without notice. With Mom living with us and Harriett seriously ill, I could not hold a job and care for these two women either physically or emotionally. I consider that day the Black Friday of my life... I wonder what Harriett calls it?

*In retrospect I wonder about Harriett's oral surgery. As long as I have known her she had bad teeth. During our time in Utah, I noticed that one of her front teeth was moving when she talked. I didn't mention it, feeling that would be "rude" (ha!). Some time later, I noticed the tooth was gone. I did ask her about it then and she said her teeth were getting loose and she didn't know why. Without insurance she had to make the decision to get the rest of her teeth extracted and get dentures. It turned out to be much more of a major undertaking than "normal." Removing her teeth didn't just involve pulling them out, but her jaw bone had started to 'overgrow' so her gums were cut open and the bone was shaved down to a size & shape that could accomodate dentures. It occured to me much later, after her cancer diagnosis that perhaps the bone cancer had played a role in the loosening of her teeth. I supposed I will never know, but it will make me more aware about questioning things regarding my own body.