Wednesday, June 15, 2106. “Phase II” of my treatment started 2 weeks ago today. There were many similarities to today and two Wednesday’s ago. There were also some important differences in between…
At first I was going to write about each day of treatment, a play by play of sorts. But then I decided to wait until the first four days were done. I even thought about titling the first part of Phase II (Wednesday through Saturday (June 1-June 4)) the “4 Game Sweep.” Other than feeling a little crappy at times for a few limited hours, I felt good pretty good each day. 4 Game Sweep was going to be written on Sunday June 5th.
But we were thrown a solid (and well moving) curve-ball Saturday night June 4th. At that point, a “sweep” was no longer in the cards. [I covered all of this in my June 6th post.] It was similar to how the Cavs (and their fans) felt after we blew out Toronto the first two games of the Eastern Conference Finals, only to lose two games in Toronto and suddenly be in a real series. Fans were definitely concerned. Some even felt fear. But LeBron rallied the troops and the Cavs got it done.
It did, however, seem apropos to write about the last two weeks today. Today we were in the same room we were in on Wednesday June 1st (K 305-1, Infusion Bed 1). We even had a consultation with my phenomenal doctor in the same room (Exam Room 10) where I had my bone marrow test on April 27th (the day Chapter 1 was written). I am a big fan of signs and connecting the dots. Today also marks my last day of chemo for two weeks, as well as my triumphant return to steroids (i.e., a desire to organize, an increased appetite and little sleep; but all things we are now well aware of and can undoubtedly handle). And while I call it a “9 Game Series,” this has actually been 15 days of chemo in a row. [This explains the reason for blood transfusions and low hemoglobin and white blood cell counts, which we were told will likely happen again next week. Only now we are much smarter about what I should do after certain treatments and when I need transfusions.]
[By the way, I write all of this NOT for sympathy purposes (trust me, I know how to play that card); this is for me, my family and friends to both understand real time (or close thereto) what is happening and (for me especially) to look back on and remember how we all beat this thing together (the support from everyone has been humbling and empowering). And maybe this could even help others in similar circumstances understand what may happen or what could come during the course of their treatment. As I discussed with my doctor today, it is nearly impossible to plan for how people react to chemotherapy. No matter what you read or who you speak to, we are all different and react to treatment in different ways. My simpleton take coming out of that discussion: hearing and reading about what others have gone through, at the very least, helps focus the here and now and adds some color to the side effects you read about in black and white.]
Each morning, for the last 15 days, I have taken two “6 MP” pills. This is short hand for Mercaptopurine. It is a type of chemotherapy used often to treat ALL (acute lymphoblastic leukemia). One of the side effects, which research suggests occurs in greater than 30% of patients taking this medication, is low blood cell counts (i.e., your white and red blood cells and platelets may all decrease) . I am in the greater than 30% (last week I had 5 blood transfusions plus a platlet transfusion earlier today; while my white blood cell counts were low, I was spared a shot today and instead have been taking several antibiotics to fight off infections). Other side effects include nausea (which I have daily, but have great medication to address); poor appetite (not a problem for me); mouth sores (have not had these in June but did have these during my first hospital stay (as I will explain in unwritten Chapters 2, 2.5 and 3), and these suck); and skin rashes (none to report to date).
On June 1st and earlier today I had spinal taps (known as Lumbar Punctures). I hate these procedures and get agida if I know they are coming. Which explains, as I have said before, why Jen does not mention these to me before they are coming. And even the “chemo calendar” my doctors made is deceiving; it is listed as IT-MTX, so I just assume it is a chemo (which it is, just delivered through the spine). I even asked today whether there was some coordination between Jen and Natalie (one of the great PA’s) to use “code” and try to trick me. In any event, I guess I am getting used to these. And that is good since today was number four of 12. So I’m 1/3 of the way home! IT-MTX is code for Methotrexate. I am fortunate my cancer is not in my spinal fluid (it is one of the places this type of cancer likes to “hide out.”). But I am getting treatment just as if it was in my spinal fluid, as well as continued tests of my spinal fluid to make sure it has not spread. The extraction of spinal fluid (for testing purposes) can lead to nasty post-LP headaches. A way to minimize this side effect is by lying flat, which I have been doing all day and will do tomorrow, and drinking caffeine. Walking several miles and lifting weights (like I did on June 3) is not recommended.
On June 1st, I also received 3 chemo transfusions, including Cyclophosphamide, Cytarabine, and VCR (better known as Vincristine). Vincristine is a drug that leads to full or partial hair loss (not a problem for me) and constipation (a real problem for me (on three separate occasions)). I have had several rounds of Vincristine (including multiple rounds during “Phase I”). While June 1st and June 15th were long days, the other chemo treatment days (June 2, 3, 4, 8, 9, 10 and 11) were all relatively brief — each transfusion took anywhere from 30 minutes to an hour. If blood work was needed, the appointment would take a little longer. Blood transfusions, on the other hand, take about 3 hours. So last week (June 7 (just a blood transfusion), 8, 9, 10 and 11) were all long days. This included a three night/four day stay at the beautiful (true) 14th floor in Room 14-228.
Week 1 of “Phase II” was indeed a clean sweep. Jen was with me on Wednesday (June 1) for the long day and spinal tap (just like she was with me today). I really love driving into the City with Jen. There is something so calming about being in the car with Jen (and it is not her driving or ability to navigate with or without Waze). This is especially true when I have no clue that I am about to get a spinal tap. The truth is, when she is not telling me to drink more water and nagging me about eating or taking my medication (which in a sick way I actually enjoy), being with Jen is just easy. I can close my eyes. Make a phone call. Pass gas. Talk to her about important things (the kids) or unimportant things. Whatever I need to do. And she still loves me. She also knows the days that I need her to be there and when she should be there, and of course she makes arrangements to make that (and everything else) happen. The “book end” days both went fine, including both spinal taps (which Natalie performed with no pain other than a “bee sting” from the numbing medication (but I never did like getting stung by a bee)). We had a great nurse (Camille), who helped us on each of Wednesday, Thursday and Friday the first week as well as today. All in all, the book-end days were long (door to door 8 plus hours), but successful. I did not feel well on the car ride home or the afternoon of June 1, so I was not active. But in hindsight, especially on the heels of the spinal tap, I should have rested in bed that day (like I did today).
Evan drove me in on Thursday. Jen gave him very specific instructions the night before and even gave Evan my medication for him to give to me at the appropriate time. She also asked him to check me in so that I could go right to the small waiting room and avoid the “traffic” and watchful eyes in the main room. [I haven’t liked that room since April 27th.] When I was called by Camille, we were led to J-310, Infusion Chair 10. Not a private room, but definitely private in the sense that a curtain could be closed and there was a wall on 3 sides (although one wall adjacent to the next room was short and you could hear everything going on in the other room). We chatted for a bit with Camille (something I love to do with everyone) and she told me about her car getting hit the night before while it was parked outside of where she lives. There was real damage and she was trying to figure out the best way to deal with it (though insurance or otherwise). I told her my recent car escapades and offered to help in any way I could. I also told her it could always be worse. She agreed and said “[a]t least I have my health.” Amen. Edward came by when the infusion had just finished and we ended up going to lunch at a place on Madison near the Mark Hotel (of course Edward knew every person to walk through the door, including Wendy who made a guest appearance!). Nicole was also able to join us. [In the past I have always had mixed feelings about having “worlds collide” (as it relates to friends from different places), but in the last 8 plus weeks, on many different occasions, it has been so gratifying to see friends of mine from different times and places in my life be able to meet and interact. As I reflect on these many interactions, I have come to realize that people are meeting because of my cancer but everyone is getting along so well not because of me or my cancer but instead because of the quality of people that I am fortunate to call friends.] Lunch, which was a great time and very relaxing, was followed by a brief walk in Central Park, including up Cat Hill (which felt better than going up the hill in St. Lucia). In the times I have been in Central Park, which I ashamed to say is not nearly enough after living in NYC for 12 plus years, I did not appreciate how alive you feel walking through that park in the center of NYC with so many people (young and old) doing so many different things. I felt good on Thursday until about 2 pm, when we were in the car on the way back. I got home and took it easy the rest of the day.
Danny L. took me into the City on Friday. Danny and I go back to our Cuse days . We met in the airport at JFK in January 1999 on our way to London for a semester abroad. Syracuse asked people to gather in groups of five for housing purposes, and we got introduced to Danny by some mutual friends who said he would get along with the four of us that had already decided to live together (me, Stu, Jon K. and Ryan K.). Stu and I had lived together the previous two years (he knew how to put up with me). Jon K. and I go way back to my Cleveland days (our mothers grew up on the same street). And Ryan K. is a Boca guy who I met before college started and we were buddies at school. Danny, however, we had only just heard about. But everyone who told us about him said we would all get along. I remember someone saying Sussberg especially. Whoever said that was spot on. We were inseparable in Europe. I say Europe, not just London, because we took some great trips. We met a few girls and went skiing for the weekend in Switzerland. I did not know how to ski. And Danny bought a powder blue onesy ski suit at the equivalent of a Swiss dollar store (at first it was a joke, but I actually think he liked it). I called him Lloyd (from Dumb and Dumber) for 3 days. We also did a week plus in Italy, traveling around and staying with friends. There were a bunch of other trips too (Spain, Prague, Amsterdam). That was a tough semester for Allan and Janet Sussberg (financially speaking). I remember Allan asking me if I was going to be flying around the Continental U.S. upon my return, as I seemed to have a knack for getting around Europe. I assured him this was a once in a lifetime opportunity. And it was. The best part of Friday was Danny brought with him a photo album that catalogued our trip and brought back so many great memories.
Danny — you live 15 minutes away in Westchester and we can count on our hand how many times we have seen each other in the last five plus years. Let’s not let that happen again. [I have found myself saying this to a lot of important friends in the last two months….] The other person I met in the JFK airport in January of 1999 was Mark Levine, Danny’s Dad. Mark was an All-Star in every sense (as is Jane) and there was an immediate bond that is difficult to explain. We all lost a friend (and Danny lost his best friend) when Mark passed away on September 11, 2009 after a battle with pancreatic cancer. Danny, I am so sorry your Dad cannot be with you now and go to your beautiful boys’ sporting events and take stock of everything else you have accomplished. But I know he is up there looking down as proud as can be.
Heading out of town
June 3, 2015
I felt good on Friday. My brother came to hang Friday afternoon, which is always a good time. I then got a workout in (4 miles on the treadmill followed by light weights, all while watching the Revenant (great line —“As long as you can still grab a breath, you fight. You breathe….keep breathing“). Friday ended with Jen, Helene, Steph and Gary N. all hanging out for a few hours. I felt good Friday night. [Although I clearly over did it.]
Pete picked me up on Saturday morning. We had a good ride in, just catching up, but I did not feel great that morning. As with Evan and Danny, Pete got his specific instructions from the Boss (Jen) and all pills were taken at exactly the right time. Saturday had a different feel. Camille was not there and they put me in ST-335 — which was a room that was lined up against a bunch of other rooms and not very private (felt a little bit like a horse stall, but still better than the “Fast Track” room). The guy across the way (in a private room) had a Giants hat on. I commented on his hat; he said he hoped the Giants had a better year in 2016 than this past one. I told him to read Herzlich’s book. Pete and I then got very busy looking at Wranglers. I even bid on one on E-Bay (not a brilliant move) and sent my Dad and our family friend to inspect a car that was for sale down in Florida (turned out to be a stinker and I passed). Looking for cars was a lot of fun and a good distraction. We were then joined by Uncle Michael and Aunt Sue, who made a special visit to NYC to see me, which I really appreciate. Sue was also able to go to my cousin Lauren’s shower on Saturday afternoon and then see Jackie and Brett on Sunday following their return from Italy.
Pete, Michael, Sue and I had a great quick lunch near the hospital (I wanted to get home for Jake’s baseball game at 1 pm). [Unfortunately, one of the things I remember most about that lunch is the father sitting across the way eating lunch with his young daughter who undoubtedly had cancer. She could not have been more than 5 or 6. I can close my eyes and see the other young girl walking out with her mother just staring as I know she could not understand why this girl had no hair and was in a stroller. Heartbreaking to say the least.] I got to Jake’s game on time, took it easy in the afternoon (as I was not feeling great) and then tried to take Jen to dinner that night after hanging with friends. That was when the clean sweep ended (see my post on Monday, June 6th ). [We did not realize this was the result of low hemoglobin (as opposed to the spinal tap).]
Week 2 of “Phase II” was a different story. Most of this was covered last week in various posts. I spent Tuesday, Wednesday and Friday night in the hospital getting blood transfusions (and getting to the hospital Tuesday was a real effort as I had to go down the steps on my rear end because of dizziness). Janet, Allan (who split the week up and spent 7 days here in total) and Lenny all spent full days at the hospital (with several guest appearances from Drew and Alexis). Helene came to town on Friday and still hasn’t left, helping out in more ways than I can count. I don’t know where we would be — or how we could do this — without our parents. Thank you’s will never be enough to demonstrate how appreciative we are. We are lucky lucky people in so many different ways. Nicole, Shai and Paul all came to cheer me up and I felt much better than I did on Monday and Tuesday when my hemoglobin dropped into the danger zone (and it is always good to hang with these guys who have been like family for years). I knew I was in bad shape when I showered on Wednesday morning for the first time since Friday. And while I am definitely better, I have only been able to shower twice since. This is from a two shower per day guy in normal times. It is sobering when you don’t have the energy to take a quick shower.
But today, in what became the decisive Game 9, I feel like we came out on top. With Jen at my side, we had a great conversation with my Doctor, we know what I am going to feel like if my counts go down, and we understand what I should and should not do after a day like today (and more generally going forward). I took it easy all afternoon and plan to do the same tomorrow. Am I looking for a clean sweep June 29-July 2 and then again July 6-9 when we have another 4 game series in back to back weeks? Of course. But I also know that if my counts drop, that’s OK too. It is part of the process. And you roll with the punches and deal with it as necessary. You live and you learn right?