Thursday, August 11, 2016. It has been a little since my last post. 14 days to be exact. I know this because everything these days are by number. Each phase of treatment; your blood counts; methotrexate levels; how many bottles of water you have consumed; your blood pressure, temperature etc. Lots of numbers. Some of which are larger/longer than originally expected….
Our sole focus is being done with this forever. Whether that takes — whether it be five, six or eight months — that has obviously always been the goal. We are incredibly fortunate to be in a position for this to be both a possible and realistic goal. And there is no doubt in my mind that we get there. So in between, while you sit on the sidelines of life as it relates to 70 plus percent of your normal existence, you have to embrace the grind of treatments (i.e., the new normal), put your head down and get through it.
But nothing in life is that simple. Plus I am human, so much of time is consumed with thinking about why this can’t be shorter, how I can get back to work, when will I feel and look like myself again and being able to make concrete plans and actually stick to them. That said, I really don’t have “bad days.” Treatment days and hospital stays are not particularly fun. But they really are not that bad, especially because of the unbelievable support system around us, who all help us forget (even if only for a minute) the crap we are going through.
And in between, there are lots of goods days (with silver linings everywhere). In fact, after leaving the hospital on July 29 and not having any treatment before returning to the hospital this past Tuesday (August 9 (i.e., “day 15”)), I had a really good week (including a great weekend at the shore for the first time in a while). Getting the opportunity to walk around the neighborhood with Jen everyday at 10 am and seeing the kids both before and after camp on an almost daily basis was not something I thought I would get to do this summer (or any other summer for that matter). Visiting with friends throughout the week and weekend is always a highlight. We even got out to dinner twice this past weekend for the first time in months, which felt great. And without the minute by minute pressures of work (which I love and miss), I have been much more present when I am around and I am certain that has been noticed. [Something to remember/store away.]
Although there are no “bad” days, there are most definitely frustrating ones. Having to call Jake at camp yesterday to let him know that I could not make it up to Maine for father/son weekend starting this Friday has given me a stomach ache for weeks. Jen did not sleep for many nights leading up to yesterday’s call. And after rehearsing what we were going to say with each other, the camp owner, our parents (and anyone else who would listen), when it came time for me to say my part, I lost it and Jen had to jump in. It was the first time I cried since late April/early May when all of this went down. No parent wants to disappoint their kids. Ever. And I of course made a huge deal about father/son weekend all year because I remember when my Dad came up to camp my first summer and slept in my bunk for two nights. We beat Dick and Greg Adler in doubles and I watched my Dad water ski. That was 28 summers ago. In the end, Jake was unfazed and actually thrilled to hear that his mother (who gets A+’s across the board always) had ordered a huge water slide for the backyard and was going to have a post-camp get together. [And I am going to sign up for father/son weekend in 2017, and likely torture all three of my boys when I insist on going up every summer even if people usually only go once.] Plus, Jake and I are going to have breakfast everyday next week, take long walks and I signed us up for a golf lesson.
It was also frustrating to miss my 20th Spanish River High School reunion this past weekend in Florida. Having been in touch with a bunch of people from high school over the last couple of months because of the circumstances, it would have been nice to get together and properly catch up. From the pictures, it looks like everyone had a blast. It makes you realize that losing touch with people is an unfortunate part of life, but it makes getting back in touch that much sweeter (no matter the reason). Hopefully we have a 25th year reunion (I will likely still be bald). And I did get a good consolation prize in getting to hang out with Royce Bergman on Monday afternoon; we had lost touch during the college years and had not seen each other in close to 20 years, but we have been able to pick right back up (and catch up — cliff notes version — on everything in between).
Last Thursday — when we realized that the protocol that I am on will carry us through 2016 — was particularly frustrating. When I got to the hospital on April 27 (107 days ago), I remember hearing a couple of things: you are going to be fine, you will be in the hospital about four weeks, and the treatment will last about six months. Since I knew I was going to be fine, and after only needing to be in the hospital about two weeks for the “induction phase,” I figured we would be done with treatments in four-five months as there had to be a way for me to beat the six month prediction. That meant getting back to work (and working out (I know, I’m nuts)) in September/October. But it does not work that way. There is no beating a set protocol. It was frustrating to figure out that we were not even halfway through the treatments in the designed protocol. Like all things in life, you vent a little to your family and close friends, put things in perspective (something I do a lot of these days), and realize a few extra months is just that. As desperate as I am to dive back into work and everything else as quickly as I can, I am on a tested protocol that is designed to rid your body of the initially presented cancer (which it has) and provide a tried and true course of treatment thereafter to help ensure that those same cancer cells do not present themselves again. And when the chemo is complete in late 2016, there will be three years of maintenance to help make this a reality. We are obviously all in.
Today is our third day in the hospital this week (we told Ryan I had another bankruptcy conference in Delaware!). The hope is to go home no later than tomorrow morning; Jake’s bus from camp arrives at 1 pm in Westchester. Other than being tired (sleep is hard to come by in the hospital), I feel OK.
I had another Methotrexate injection on Tuesday, followed by an injection of PEG-Asparaginase on Wednesday. The “PEG” led to blood clots and high cholesterol in June, but we are prepared this time with twice daily Lovenox and cholesterol meds (which I have been on consistently over the last month). I am also back on a low dose of steroids for the week and Leucovorin to reduce the effects of the Methotrexate. Methotrexate is a medication that interferes with the growth of certain cells that reproduce quickly in body, including cancer cells. [As I learned from Lenny this weekend, Sidney Farber pioneered clinical development of Methotrexate in the treatment of cancer.] A significant IV injection of Methotrexate — like the injections I had on July 26 and August 9 — is highly toxic and, accordingly, the levels of Methotrexate must be reduced before discharge. Hence a three-four day hospital stay is necessary, with 24-hour IV’s of sodium bicarbonate and Leucovorin to ensure that all organs (especially your kidneys) are protected as the Methotrexate enters and exits your system. This is all part of the “Intensification” phase of the protocol, which will be done on Tuesday (8/16), and followed by the “Re-Induction 1” phase (which lasts about 45 days). And then we will do both phases again. I am going to need to make another trip to the mall to get some fall/winter appropriate hang out clothes.