Monday, May 30, 2011

It's a weird, weird, weird, weird world

WELL … Susie, my best friend in the whole wide world since high school, has been prodding me to write some more on this blog, but I haven’t been able to do it. I have a hard time writing about sad things, and I’ve felt a lot of that in the past few months. I seem to think that blogs are for fun and laughter, not sadness and tears, never that. Every time I’ve thought about writing more on here, I can only think of my pain and confusion, not the happy times. But now that I’m sitting here typing, I’m suddenly thinking of the many sunshine moments that I’ve had between the clouds, and I’m going to write (and think) about those. So here I go.

But first I’ll start with the things that have been pretty much consuming my life for the past months. Feel free to just skip this post if you want! I won’t blame you!

The problems with Cary, my boss, began the week before President’s Day in February. To back up a little, he had been having trouble with his knee. He had a minor surgery on it a couple years ago, but of course as soon as it felt slightly better, he was hauling a refrigerator up and down the steps at his cabin in Utah. Yes, a full-sized refrigerator. He bought it in Cedar and hauled it to his cabin. After he plugged it in, it didn’t work. He had to drag it back down the steps and back onto his truck and back to the store, where it was exchanged for another one that he subsequently pulled up the stairs again. A week or so later at work he was complaining to me that the dang surgery didn’t work and his knee was hurting again. I gently inquired whether or not carrying refrigerators up and down steps might be on the doctor’s approved activity list, but he gave me a cranky look so I dropped the subject. He soon started talking about knee replacement surgery, but that was forgotten when his back started hurting. He plays a lot of golf and the sore back was interfering with his game, so he had surgery to fix that. Then last fall he decided to get a full physical at Scripps in California. He got a clean bill of health, so he decided to go ahead with the knee replacement surgery. The knee replacement was done in December, and he returned to work in January. (Usually he tries to return to work way before anybody sane would consider, but that time his doctor refused to release him until he stayed home the full four weeks.)

Then in February, the Tuesday before the President’s Day weekend, he said his stomach felt a little upset and he was going home early. I thought he might be coming down with the flu. (This was before the twins were born, and Jill had been really sick with the flu about a week before that.) On Wednesday, Cary called and said that he still felt a bit nauseous and now he had a fever, so we agreed it was the flu and he should stay home. We had a conference call with our bond consultants scheduled for that afternoon, so he said he still wanted to participate. I planned to connect him to the call from home; everything was just business as usual. At about 11:00 that morning, Heather, his longtime girlfriend (been around almost as long as I have), called to tell me that he suddenly started having a lot of stomach pain so she had taken him to the Emergency Room. He’d called her at work to come get him, so I knew it had to be bad if he didn’t just drive himself. (He came close to driving himself from his cabin to the hospital in Cedar City when he cut off his finger a couple of years ago while working on his cabin. He was alone up there, and he called a friend in Vegas after he did it, and the friend insisted that Cary call 9-1-1. That’s my boss.) At first they thought it was a blockage of some sort, a twisted bowel kind of thing. Later they discovered it was a growth. They took him by ambulance to another hospital, and on Thursday around noon he had surgery.

To make a long story short (yes, I know, it’s already long), they removed over 30 tumors around his stomach and intestines. They couldn’t get them all because they were everywhere. At first the doctors thought it was Gastro Intestinal Stomal Tumors, or GIST, a type of cancer that has a fairly successful treatment history with medication. After initial treatment, it’s a pill you take every day to keep the tumors from growing and spreading, so it’s not a cure, but it can keep the cancer from progressing for a decent amount of time, years, even (they call it PFS or Progression Free Survival, which sounds kind of harsh, but it’s not that bad, when you think of the alternative). Hard to accept, but something we could (kind of) deal with for now and who knows, maybe a better treatment would come along by the time the pills stopped working.

It took weeks to get the results back from the biopsies that were done, and the end result was much worse. It’s something called spindle cell sarcoma; his specific type is very aggressive, and there is no approved treatment for it. In addition, he was in Stage Four. Cary’s only hope was a clinical trial being run by the Mayo Clinic in Minnesota (actually a clinic in Texas is also doing a clinical trial on it, but Cary chose Mayo). In between bursts of total joy (the birth of the twins and visits with my family), I was dealing with travel arrangements for my boss and basically trying to keep the office running on a fairly normal path. Of course Cary returned to the office probably ten days after his surgery. He was supposed to be in the hospital for at least two weeks. He got out in one week and then dragged himself to the office the following Monday. He looked like death warmed over and didn’t stay long, but he did his best to be there nearly every day. At that time I took a week off to be in Arizona for the twins’ birth. I had asked one of the department secretaries to sit at my desk and take care of Cary while I was gone, but it turned out that she wasn’t needed, because Cary was out all week with pneumonia. He was back to work the next week, a few hours a day, but he was not feeling very well. The stomach pain and nausea never really went away after the surgery, and he was struggling. I went back down to Arizona for the babies’ blessings (much more about that weekend later). A couple weeks after that, Cary’s son got married. I went to the wedding. Cary had still been dragging himself to the office every day. I took the next week off to go back to Arizona to help (and be with) Jill and the kids for the last week before they moved. Again I arranged for someone to sit at my desk and again she wasn’t as desperately needed, because again Cary didn’t come to work all week. In fact, the Thursday before the wedding (we are off on Fridays) was the last time he was at the office. He was too sick to go to the office and believe me, knowing Cary, it had to be really miserable to stay home. He just ain’t the stay-home-just-because-I-feel-horrible kind of guy.

When I got back to town after my last trip to Arizona, I found out that Cary was back in the hospital. The Thursday I was gone, they had started chemotherapy in his clinical trial, and they had installed a port to make that treatment easier. He was in the hospital for tests to find out why he was so sick and in so much pain. I stopped to see him. They decided he also had an ulcer and he went back home the next day. Since then, the chemo made him so much sicker than he already was that he has barely been able to move from his bed to a chair. Coming to the office was completely out of the question, even for him.

After a couple weeks of total misery, Cary decided to stop the chemo. The doctor said it wouldn’t cure him, and now Cary is more interested in quality, rather than quantity, of life. After weighing the options of what would be best for his kids financially, he put in his retirement papers, effective June 1. Heather (his girlfriend) is hoping that he can make it to the office one more time, so last Thursday I cleaned up as best I could but left all of his mementos scattered about as he always had them. They are recruiting for his replacement, which will be difficult. He really is among the smartest people I have known, a financial genius.

I hate to even mention how all of this has been affecting me, because I don’t want to make this awful situation “all about me.” He is the one who is struggling. He is the one who has had to face these awful truths, and without the comfort of the Holy Spirit to help him through, but I guess you have to admit that these things affect a lot more people than the person himself. He has two kids who are really suffering, and his girlfriend, of course, and his father, who is still living (like I mentioned earlier, his son got married a few weeks ago; his daughter graduated from UNLV last year). But I have worked very (sometimes too) closely with him for 17 years, and it has hit me really hard. When he first had the surgery, I had his permission to tell everybody about what had happened and what was going on. When we had the initial GIST diagnosis, I was allowed to tell people about that. He never gave me permission to ask for prayers, but I did it anyway. In the group e-mails I sent, I said “he isn’t asking for your prayers, but I am.” But after we found out that it wasn’t GIST after all but something much worse, I was no longer allowed to share the information. Cary didn’t want people to know. So there I sat in my office, knowing the truth, with people constantly coming around to ask how he’s doing, and I have to put on a positive face and say that he’s doing good. Most people still think it’s GIST. I can’t just sit in my office crying all day, so I have to get control over my emotions, and I’ve done a pretty good job. Once in a while when someone is being especially sympathetic, a little leakage will occur, but pretty much I’ve kept it all inside except for the when I get home, which makes it really fun for those I live with. Jimmy tries his best to comfort me and then escapes to his room. The cats don’t care. Chica just cuddles up and throws in a lick here and there. Dobby does what comes natural to him – he will make a gesture at comforting me but worries deep inside that it’s somehow something he did wrong and goes to find a corner to pee in somewhere. It’s a guy thing. At least it takes my attention away from my sadness long enough to get mad at him. So he’s helping! (And both of the dogs are now confined to the kitchen or their kennels a lot more than before.)

All of this restraint at work is taking its toll, though. It’s sort of amazing to me that no matter how tiny the tear, the headache and general weariness that follow are the same (or worse) as a full outburst. People are always telling me I look tired (read: OLD), even those I rarely talk to. Actually, I’ve been taking headache, sometimes migraine medication nearly every day. I’ve broken out in acne, hives, and I even got a sty in my eye over the weekend. The emotions are coming out, whether I want to let them show or not! Instead of crying all day, I just get to look old and ugly. What fun. Added to that is the mixed reactions I get at work. Some people look at me and seem to think, you sure don't seem to care, where are your emotions? Others look at me like I'm too emotional and therefore unprofessional. I can't win.

Added to all of this, on May 5th, Joyce, a friend from work that I have known the entire time I’ve worked there, had a sudden, massive stroke. She was having a little Cinco de Mayo get-together with a few friends when it suddenly hit her. Her husband called 9-1-1 and she was rushed to the hospital, but vital parts of her brain had already died and she was paralyzed from the neck down. She couldn’t even swallow. A mutual friend, Linda, rushed to the hospital to see her that night, and she said that when Joyce opened her eyes, Linda could see that Joyce was already gone. When Joyce’s husband first started texting Linda, Linda thought he was checking on arrangements for the surprise 50th birthday party they were planning for Joyce in June.

The family knew that Joyce wouldn’t want to be kept alive in her condition, so they took her off life support and put her in a hospice (she was able to breathe on her own, and they didn’t put in a stomach tube). She died a week later. The week after that, they had her “Celebration of Life” at their Baptist church. They showed the slide show that was made for the surprise 50th birthday party that never was. It’s so strange, because I saw her for the first time in a while on the day she died. She was passing by my office and stopped to say hello. Since we hadn’t seen each other in a while, we asked each other where the other one had been hiding. As she walked away, she said one of her trademark favorite phrases, “S.H.I.T.” (Sure Happy It’s Thursday – again, we have Fridays off). And that was it.

If all this isn’t bad enough, Cary has now decided that he doesn’t want to talk to me anymore. He rarely calls, and when he does, he wants to talk to Rick, one of the department managers. Cary, who never bothered to learn anyone’s phone number but mine, calls him directly and, if Rick doesn’t answer, then Cary calls me to say, “put Rick on the phone.” If Rick is gone, it’s “put Randall on the phone” (another department manager). I don’t think Cary even knows about Joyce, because Rick didn’t think he should tell him. The only reason I know most of the details about Cary’s health is because I have asked Heather for the information. Maybe Cary doesn’t want to listen to another weepy female, but he should know that I can hold it together, I can be trusted, and I care.

And yes, I remember that it’s not all about me. But still, being shut out hurts even more. It really hurts.

So, on this Memorial Day 2011, I sit at home and feel sad. Tomorrow I’ll reaffix my mask, put on my big girl panties (Gs), and go back to work. I’m pretending to put together a retirement party, in case he's ever well enough to attend one, and working on a farewell video. I hope he’s here long enough to see it.

(Are you still sure you wanted me to write something, Susie?)

For anybody that's still reading and might be concerned about me posting this information on a public blog, I'm pretty comfortable that hardly anybody at work reads my blog. Plus the fact that Heather is friendly with someone else at work, and everything I have written here has already been spread around work by the other person. I've heard these things (and much more alarming stuff that I can't confirm that may be exaggerated) from other sources at work. I don't feel that I'm revealing anything confidential.

In a day or two I’ll post some of the sunshine moments of my past few months. I just can’t write any more right now. Something to look forward to?