Monday, June 6, 2016. My first post since Friday. This requires an explanation as I had intended to post every day (or at least until I didn’t have something to say). So when I didn’t post, I got a bunch of notes asking if all was OK. Which I appreciate very much. Both because people are reading this, but more so because so many people continue to remind me how much they care. And, of course, stroking the ego is always a good thing, especially when you are literally lying in bed!
There is a famous saying that “payback’s a bitch.” I have even heard someone say that “karma is a bitch.” Fancy way of saying that something bad is going to happen as a result of something else. So on the day after that I wrote about my favorite word donkey, would it not make sense for me to be the biggest donkey of them all? King Donkey. Sir-donk-a-lot. Moron even works.
As I ate my over easy organic eggs this morning with a piece of grainy bread (from Whole Foods) and sautéed spinach, all prepared by my mother — who thank g-d came to Scarsdale yesterday at the perfect time — I realized I have one person and one person only to blame for having to lay flat for the last 36 hours because of a splitting headache, nausea and dizziness. Me, myself and I (I love the song by G-Eazy and Bebe (this is the title for those unfamilar)).
This past Wednesday, on my first of four consecutive days of treatment, I had a Lumbar Puncture. This was my third “LP.” [They start using acronyms once you become a veteran.] A lumbar puncture is a fancy way of saying a spinal tap. It is a procedure in which a small amount of fluid that surrounds the brain and spinal cord is removed and examined. At the same time the fluid is removed, sometimes medicine is also placed into the spinal fluid. Each time that I have had an LP, in addition to testing the spinal fluid for cancer (which fortunately for me they have not found), I also get an injection of chemo. The type of cancer I have has a way of getting into the spinal fluid so they need to make sure to cover those bases, treat me even if it is not there, and test my spinal fluid for the rest of my life. But it is the extraction of fluid that leads to nasty headaches. They tell you to drink caffeine before and after, and you must lie flat for at least 1 hour post-LP. I read the information they provided to me at the very beginning of my treatment and did not see any directives about the days that follow. One would have to believe, however, that taking it easy for the few days after the LP, and probably laying flat and resting, would make logical sense. There is also a huge disclaimer at the end of the Lumbar Puncture document they give you that says, among other things, “[t]his information is brief and general. It should not be the only source of your information on this health care topic.” How could I really believe that if I lay flat for 60 minutes (and not a second more), I am out of the woods?
After my first LP, I did not experience side effects until 2 plus days later. Didn’t know what it was from, but I had a terrible headache and threw up (it was my second Saturday morning in the hospital and Brad had come over for breakfast — he brought me pancakes). I don’t remember getting a nasty headache after the second LP. [I will say that I get agida before each and every LP. Probably explains why Jen conveniently did not tell me I was getting the LP this past Wednesday. I should have paid closer attention to the calendar and I would have seen it myself. When we walked into our designated treatment room (all of which I will discuss under separate cover), Jen asked the nurse about getting some anti-anxiety medication. I was totally confused as I was felt decent and was ready for chemo. It all made sense in a few minutes when I heard that in addition to 4 different chemo treatments, I would be getting the LP too!]
I did not exactly take it easy after my LP on Wednesday. There was a walk in Central Walk with Ev on Thursday, a 4 plus mile walk on the treadmill Friday (with an incline) while watching The Revenant followed by biceps, triceps and rear delts in my basement (I am still a little sore). There was also Jake’s baseball game in the hot sun on Saturday, and I couldn’t exactly stay seated for the three full innings I attended. I even tried to take Jen to dinner on Saturday night at one of our favorite restaurants (Andrea’s 25 in Mamaroneck on Boston Post Road). Although I had a headache brewing Saturday afternoon, I did not really feel badly until we were in the car on the way to the restaurant. Jen, of course, suggested we turn around, but I really really wanted some alone time with Jen and thought sitting at a table in a restaurant we both loved would be perfect. Turns out there was no table available, but we sat at the upstairs bar (may have been the first time ever I sat at a bar and did not order a real beverage). I didn’t tell Jen I was so incredibly nauseous I thought I was going to throw up at the bar; instead, before the entrees came I told her it probably made sense to get things wrapped up and head home, which she of course had been suggesting the entire time. I even remember telling her I had a terrible head ache and we looked up on my phone whether or not headaches could be a side effect of chemo. We both specifically discussed and agreed that we were well past the LP and that the headache could not be related. We were wrong.
[We go to Andrea’s 25 a lot. We go with friends. We have been with the kids. It is just a great place to have a good meal and a good time. And all the people there are genuinely good people. They take the kids back in the kitchen and let them prepare their own desert. The kids love that. And I don’t think we have been there on Saturday night and not had a great time. So when Jen pushed Carmine, whom we know well, for a table and said it was important because I was sick, Carmine started asking what was wrong. Was it the heat? Flu? While I have played the cancer card, I am not looking to play it for a handout. But when I didn’t shake Carmine’s hand or give him a hug (as I always do), I figured I should just tell him what was going on and that this was just a speed bump- I would be back in a few months sitting upstairs with all our friends and making noise. His genuine concern was much appreciated. His paying for our dinner, however, was totally unnecessary. I definitely was not telling him that I had cancer so that I could get a free meal. I was telling him because I actually like him and was I uncharacteristically “non-friendly” when I didn’t give him a hug upon entry; he deserved an explanation. But I do very much appreciate the gesture and I guess that is why we like the place so much. The people there are really just good people and it makes you want to go back. Donna — apologies again that I had no cash in my wallet. Jen is bringing an envelope today and we will leave it at the front. And sorry we didn’t get there yesterday as promised. [Time and time again that happens to me — no cash in my wallet. (Randy Pausch (I know you’re out there somewhere) you were spot on in your book, which I finished yesterday.)]
As soon as Jen pulled into our driveway, with the entrees sitting at my feet, I knew I was going to be sick. Barely made it out of the car. I threw-up a ton (sorry to the Miller’s who brought over appetizers; lots of celery and humus in our driveway on Saturday night). Even after I threw up, I had a nasty headache. So bad that I after speaking to my in-laws and watching my father in law try to wash away the barf with water from the flower pot, I had to lay down. I woke up around 11:30 pm and ate my chicken scarpiello in 30 seconds. I thought that was why I felt like I was going to throw up again. That sensation did not go away for hours. Nor did the headache. So we (Jen joined me) laid down again in the study and Jen rented the movie How To Be Single. I didn’t fight her on it as it secretly looked decent. She passed out within minutes and I sent her upstairs to bed around 12:30 am. I wanted to turn off the movie and go sit at my computer to write a post that night. But I couldn’t. I liked the movie too much. Undoubtedly a “chick flick,” I really liked this one. Come to think of it, and I can admit this, I like most all “chick flicks.” There is something to be said for a romantic comedy that isn’t trying to win an Oscar. You have no expectations. In fact, you expect it to suck. But they never really do. They entertain you. Which is exactly what this type of movie is supposed to do.
When the movie was over at 2 am, and since I had slept a few hours earlier, I tried to do my post for the day. It was not going to be a long post because of the time and how I was feeling, but I only made it through two paragraphs. The headache was too much. I could not finish and had to lie back down. [A draft was saved and I am going to finish it today. I also plan to include a separate post I was thinking about from yesterday but just could not type out.] I woke up at 4 and got myself into bed. It was not easy making it up the steps and I woke Jen to let her know. She of course did not sleep the rest of the night and I quickly passed out. But the headache was still bad the next morning. After missing Jake’s basketball game (the third one in a row), and having trouble getting out of bed, I finally called the clinic at Jen’s insistence. I also eventually emailed my doctor. She called me within minutes and explained this was all related to the LP (again, I have the best doctor and she is the best for lots of reasons, including her responsiveness (something I have always strived to achieve 24 hours a day). She also said that because of the way I have been reacting to the LP’s, we may need to figure out a different way to get chemo into my spinal fluid (she mentioned a brain port, which she briefly explained and said sounded much worse than it is!). In the meantime, I needed to lay completely flat and hydrate myself. I also would need an MRI to see if anything was wrong (you can look up whether it is grammatically correct to say “a MRI” or “an MRI.” I am correct). When I told Dr. Roboz that my next day of treatment was Wednesday, she said I might need to come in sooner if the headache is not better. And after an email exchange yesterday, she said suggested if the headache was really bad I should get admitted to the hospital, get an IV and start running some tests. But I had a sense that I would be better this morning and needed a good night’s sleep.
Last night was one of the better night’s sleep that I have had. While I had a pretty bad headache when I went to sleep last night (holding Jen’s hand), I woke up and felt much better today. And then it hit me. I thought I was in the clear from the LP after laying flat on Wednesday for 60 minutes. When I asked my mom to make me two eggs “over easy” this morning, I was chuckling to myself as I hadn’t taken it so easy after the LP and thought it would be poetic to eat eggs over easy (which I really do like). I certainly did not take it easy after the LP. I am pushing myself, like I do with everything, and trying to keep things as normal as possible, especially for the kids. Yet I am recognizing that the harder I push the less I am going to be able to do. It was much more important to go Jake’s soccer game on Sunday afternoon (which I missed because I had to lie flat all day) than walk several miles and lift weights on Friday. Kind of like eggs over easy. And there is no right way to eat eggs over easy; everyone’s preference is different (some like the eggs cooked through, others like the eggs runny). While I am somewhere in between, I’m thinking to myself I may be best served now and in the future letting the eggs cook a little longer — thinking about the little things more (like I would with any major decision) and not rushing everything.