Gag Me in the Morning
September 23, 2009
Finally, O Best Beloveds, I’m writing about those weeks that had me sounding so dour. Since this dates back two months, it’s hard to believe it even happened, so much have I improved since then. But you can always write to Deb or Steve for confirmation.
So it was four days after Dave died when we heard from Dr. W. that chemo was now pretty much off the table as an effective treatment, and that we were down to one final Hail Mary pass in the form of estrogen treatment. (A regime since written up in JAMA as being the new hot thing for breast cancer. Go, Dr.W! Way to stay ahead of the pack!) Heaped on top of our other soul-crushing event, Steve and I didn’t know who to grieve for–Dave, or us? Both? Is there even room for that much? I think we both opted to go numb with grief and try to ignore it all.
I still think this was a good plan. But it turned out to be not possible. Because reports were clear that Tylenol and a healthy liver are not compatible, Dr. W. took me off Vicodin and put me on Fentanyl pain patches for my persistent body aches. Now, here’s something you probably didn’t know; in 12 (nearly) years, I’ve only googled about matters relating to my disease and treatment maybe three times. I figure what I don’t know won’t then cause me to imagine all kinds of terrible things. Ignorance, bliss, etc. Yet I did look into Fentanyl, and casually noted that a side effect can be breathing issues.
So of course, within a day or so on the patch, I started noting a tightness to my chest. I chalked it up as psychosomatic. But it got worse. And worse. By the time Deb arrived the following week, I was having serious trouble breathing. We went off to get an X Ray, which showed some fluid in the lungs. I blamed the patch and cried “Get it off me, get it off me!” and nearly chewed it off with my teeth. Dr. W. switched me to Norco pills. But by Friday, I really couldn’t breathe right. Also, I start coughing and then suddenly vomiting, except there was nothing for me to throw up, yet all this fluid came out of me and it seemed like it was coming from my lungs. So the three of us are in varying stages of freaking out, because–what the hell? And also, you know a good time, and by good time I mean “just about the worst possible time”, to have a medical crisis? 3pm on Friday afternoon when you live in Silverlake and your doctor is in Manhattan Beach. I was really upset, and my body was betraying me in all kinds of ways it never had before, and all of a sudden, for the first time, I felt like I had cancer, because I wasn’t on any meds that could cause this, only the disease could, that’s a first for me. And, I am sorry to report, Beloveds, there was some sniveling.
We got Dr. W. on the phone. “You know, Mary,” he said, “I’ve known you 12 years now, and this is the first time I’ve heard you cry.” Sad to say, that warmed my stoic, approval seeking little heart. Discussions were had, because the goal is to try to prevent a trip to the emergency room, for all kinds of reasons. Dr. W. assured us that he was on call all weekend and not to hesitate to call.
The next morning, as soon as I got up, I started to cough, and then was overtaken by a gagging action that sort of sounded like a cat coughing up a rhino-sized furball from the depths of hell. Steve and Deb held buckets and washcloths and I tried not to freak out some more, but again; it’s deeply disturbing when your body is so out of control. The gagging stopped after a bit, and I spent the rest of the day down, coughing hard, and fretting. That late afternoon was Dave’s memorial party and of course I couldn’t go, it was ridiculous, I can barely sit up. So I got in Rick’s car and we all went. And stayed for hours. I know! None of us can explain it! If there is such a thing, I think it must have been Dave, harumphing “Miss a great party, will you? I don’t think so!” (And it was a great party; his favorite food, his favorite music, his many t shirts hung up as decoration, friends dating back from grade school, a proper New Orleans funeral second line, and more.) I only gagged and freaked out once, but Perfect Diana was there to soothe me, and Robin brought me coffee the exact way I like it, which only she can do, and its taste made me think of Jazz Fest mornings in our New Orleans house, the best mornings there are, when she would do the same, and that’s what made it a loving cup.
So that was Saturday. From then on, every morning when I woke up I would go into uncontrollable gagging. (It remained unfun and panicky.) And my voice was either gone, or super raspy. And I coughed all the time. And yet, and yet…by Monday, when I went to see Dr. W., I was…better. Incrementally, but enough that Rick could see a difference from Saturday. Dr. W. put me on prednisone, hoping to help the lungs, and I started the estrogen. Then we went back home and hung out. Every night, someone would bring or make my favorite foods and I tried not to think negative stuff like “is this the last time I’m going to eat Langer’s pastrami?” (No, as it turns out. Had some more this last Saturday.) And I coughed and I gagged and my body ached and felt weird weird weird, like it wasn’t my body any more.
And that was hardest of all. I’ve experienced this before, feeling alien in my own body (yes, you materialists out there, I said that and it’s true), but that was during chemo. And even during the worst of those times, I could always say “I only have to do this X number of times, and by March XX, I will be done and it will be over.” I had something to work towards, see. But this time–what am I working toward, exactly? Getting better? How? And if not getting better, then what? Getting worse? And then what? I am sad to say that with an attitude like this, there was some additional sniveling.
Things just weren’t good, and Steve and I made plans only for each day, and nothing more. I’ve never lived so much in the moment as that time. Nothing beyond each day existed for me. Or him. On more than one occasion, we talked about getting out, just going somewhere, getting on a plane for Budapest or Rome, and just spending what time there was there, just us. Completely impractical, but we thought it. What we wanted to do, really, was escape. I wanted to get rid of my traitor body, and we both wanted to run to where we couldn’t hear the other shoe fall.
And yet I did keep getting…better. Just a tiny bit. Half a percentage point every day. Maybe. But…better. Each morning, I gagged for a shorter period of time. For a couple days, I didn’t at all. Then I did again, but briefly. And then it went away. I kept coughing, but not as much. Sometimes my voice came back. My appetite fled, and I dropped ten pounds–didn’t need them anyway, frankly–but it came back again, some, anyway. (Strangely, I lost the desire for sweets for weeks. That may have been the weirdest twist of all.) I went into see the doctor, and he said my lungs were clear, which could be the pred, so don’t get excited, but my liver was smaller and that could be nothing but the estrogen. Could it be? Really? The blood work came back, as you know. Yes, maybe.
Still, I didn’t have energy, and I still hurt, and I still couldn’t breathe much, and here comes Plucky Survivors, the make it or break it moment when I had to decide, and I said “What the hell, let’s go” even though Deb was rigid with worry about the venture. I questioned the wisdom of it myself, but like a good disciple of Scarlett O’Hara, I just thought “I will worry about it when and if it becomes a problem.” And to everyone’s shock, it didn’t. Sure, I hurt when I got up in the morning, but Norco only takes about twenty minutes to kick in, and by then I was in Plucky Mobile with Rick, and it was like any other PSSA, like nothing had happened, like my doc hadn’t just given me dire news and my sister wasn’t writing emails to various friends saying “Er, if you want to see Mary, make it soon.” (Yeah, she was TOTALLY doing that. She meant well. And I really wasn’t feeling very good. Any day, we thought we were going to be able to tell the make and model of the other shoe. So she legitimately thought she had a point. Let’s tease her about it anyway.) Came even the day in DC when Yasmin, Becca, Steve, Rick and I went to two Smithsonians and the Crime and Punishment museum, and I walked around and viewed like I wasn’t a cancer patient at all. I mean, I think Yasmin, who had flown up from Amherst for the day thanks to one of the aforementioned emails was thinking “Er-huh?”
And it’s been that way ever since. Yeah, even the slightest incline makes me puff. And I still ache. And cough. And while my left arm has absolutely improved, it’s still only slightly functional. And I don’t want to do much, but mostly that’s because what I am doing is my favorite thing in the whole world, apart from walking around an Eastern European town with Steve; reading. But I’m amenable to doing stuff, and lovely people are coming to visit and feed me, and that’s quite good. What’s more; plans that go beyond today are being made. Suzanne and I are looking into going to New Orleans towards the end of Oct. And Steve and I are actually looking at those European European towns and wondering what the weather would be like in mid-to-late November. There’s some walking and eating we would like to do.
Eye of the hurricane, maybe. But I feel mentally and emotionally perky again, and my big hope now is that I can hold on to that if the storm is coming back. It helps a lot, you see.
So does really good pastrami, as it happens. And Chuck’s bbq shrimp. And a good book or 40. And pills. And loving family and friends.
Like you, Beloveds,