Welcome to my blog.
I plan on using this blog to update you all on how i’m doing and to stay in touch.
Please feel free to add your comments below any post.
Heartfelt thanks to my entire family and all of you for your support.
Beating This Thing
Welcome to my blog.
I plan on using this blog to update you all on how i’m doing and to stay in touch.
Please feel free to add your comments below any post.
Heartfelt thanks to my entire family and all of you for your support.
Tuesday, January 3, 2016. Happy and healthy new year to everyone. The healthy part of that sentence has taken on new meaning for me. [As much as I have joked in the past about whether saying “happy (and healthy) new year” is appropriate when you get into late January or even early February, this year there are no rules and I might just say happy and healthy new year all year long.] And while I am healthy (cancer free and done with the intense chemo), I am not yet healthy. There is a long way to go before I am back in fighting shape. The Christmas-break “vacation” (in the hospital) took a lot out of me; as much as I would like to be in the office today — if only for a few hours — I know I need to take it slow and recover this week. But I still got to see Rogue One with Jake (awesome), walked on the treadmill at a snail’s pace, and hung out with friends on New Year’s Eve (which might explain why I spent most of New Year’s day in bed (thank you, Jen). All worth it. Yesterday we had brunch in NJ for Lenny’s b-day with the entire Nelson family at Brad’s and Julie’s new house (where I napped most of the time). Today, after sleeping great last night, I spent most all of the time at my desk at home and feel organized and ready to go. The bottom line is we are taking things day by day. And everyday is a little better/easier than the day before. The exercise bike (as adjusted yesterday by Pete) was harder today than it was in March/April when I unknowingly had a grapefruit in my chest. Tomorrow I think it will be a little easier. Talk about good problems to have…..
This post is a long time in the making. And it is one I saved until now for many different reasons.
When we first found out I had T Cell Lymphoblastic Lymphoma, we had no clue what it was (and neither did the assigned oncologist at the local hospital). [After lots of “Google” searches in late April and early May (similar to those conducted by the assigned oncologist), we learned the basics (and some of this was included in my very first post on May 13, 2016 and a few that followed)]. We know a little more now. But still not that much.
Not going to bore everyone with too much science, but we all have five (5) different types of white blood cells: (1) neutrophils, (2) eosinophils, (3) basophils, (4) lymphocytes and (5) monocytes (here is a link if you are interested in more detail about what these cells actually do). A “T cell” is a type of lymphocyte (also known as a T lymphocyte, part of category “4”) that originates in the bone marrow and matures in our thymus. All T cells are part of the body’s immune system, which helps to fight off infections, viruses etc. And there are many different types of T cells. [When your white blood cell count is low (meaning all five categories are depleted), your body has trouble fighting off any infection — like mine last week as a result of lots of chemo.]
T Cell Lymphoblastic Lymphoma occurs when “abnormal” lymphocytes are present in the lymph nodes or thymus gland. In many instances, these bad T Cells gather and form a mediastinal mass in the inner chest area, causing breathing difficulties and chest pain (exactly what I had for a while before we actually figured this out). This usually presents itself in an “acute” manner and requires immediate treatment (otherwise it can spread fast and cause major problems throughout the body). There is nothing to do to “prevent” abnormal lymphocytes from forming a mass or otherwise presenting itself through swelling of lymph nodes — but if you look hard enough on the internet you can find anything!
T Cell Lymphoblastic Lymphoma is extremely rare: it accounts for just 2% of all non-Hodgkins lymphomas. Based on my math (and seeing various numbers on various sites), this means less than 2,000 instances each year (and I am rounding up significantly). In addition, most cases of T Cell Lymphoblastic Lymphoma involve children and young adults. Adult T-Cell Lymphoblastic Lymphoma is even more rare. [I was treated through a “protocol” that is highly successful for children diagnosed with Acute Lymphoblastic Lymphoma (ALL); for adults, the specific doctor in question will determine the right course of treatment for (and there are lots of studies on-line to review about how people react to this treatment, all depending on age, how far this has spread and a host of other factors).]
We were lucky for so many different reasons. One of those reasons is because I had an unbelievable doctor (and team) who knew exactly what I had on the day I showed up (April 27), along with a plan of attack before we really even knew what was being attacked. We never had to worry about the course of treatment or whether we were on the “right” path forward. We are fortunate to have gotten to the right doctor at the right hospital (there are several people on our team to thank for this) and we are forever grateful to Dr. Roboz and everyone at NY Presbyterian / Weill Cornel. [Within minutes/days, we had dozens of recommendations for doctors or hospitals from friends, family and colleagues. As discussed below, this was just the beginning of the incredible support that came from so many people. I hope everyone knows we appreciated each and every recommendation, even though we were fortunate to have family that helped us figure this out literally within minutes of being diagnosed.]
The other big reason is we have never been alone. From the Sunday when I left the Scarsdale medical center for the local hospital to the present day — family, friends (old and new), colleagues, communities that we belong to (or have belonged to) and so many others have been by our side in too many different ways to count. I have said it many times before — with apologies to those who are sick of hearing about it — but I am going to say it again. Calls, e-mails, texts, visits, being able to focus 100% on getting healthy and not worrying about anything work-related, the “meal train” (which started in April and only recently ended), helping with our kids (whether it be sleepovers, playdates, driving an extra leg of a carpool), getting me in touch with friends or family members that are dealing with (or otherwise beat) cancer, the list goes on and on and on. Both Jen and I are humbled and grateful every single day. We will never forget it.
During my stay at the hospital in late April/early May, I was given an orange bracelet that says “No One FIGHTS Alone” (it is still on). I learned that orange is the “color” for leukemia awareness. I asked about the “color” for lymphoma too, since at the time I was unclear if I had lymphoma or leukemia. [I’m still a bit unclear (and if I have confused any of you in prior posts, apologies). The answer is that I have a rare form of lymphoma, but my doctor is a leukemia specialist. And the best way to treat what I have, which is similar to a blood disease (leukemia), is via a leukemia protocol]. The color for non-Hodgkins lymphoma awareness is lime green. I received a package at the hospital from The Leukemia & Lymphoma Society, which I remember thinking at the time was a great “combo” for someone like me (the orange bracelet might have been in the package, just can’t remember). [If you want to read an inspirational story, which includes a bracelet (it says “Life Goes On”), see the link that follows.] I was in touch with people from The Leukemia & Lymphoma Society soon after being diagnosed and remain in contact today. [I hope to get involved in certain initiatives (although I did not really take advantage of the other opportunities provided by this organization to patients immediately after diagnosis, including participating in support groups and getting regular information about cancer).]
After finding out about the orange and lime green colors (and confirming with Jeff, who knows all about this unfortunately), I talked with my brother, brother-in-law Brad and Evan (I think they were around at that moment) about making a “new” colored bracelet. I can’t remember whose idea it was. And I can’t remember who came up with “Team Suss.” But I do remember Evan put the muscle emoji after Team Suss. A combo of Drew and Brad ordered the bracelets. It was — on purpose — a marriage of orange and lime green. [And I still have bags of these near my desk at home.]
And while it was just a bracelet [which lots of people wear/wore; I haven’t taken mine off], it ended up meaning so much more. It truly was a team effort. Forget the bracelet, we had a team of people from around the country support us throughout. In all ways, big and small. Just a short note letting me or Jen know you were thinking or praying for us was huge. Even an e-mail or card that said you would like to help (and felt helpless) was, in and of itself, incredibly helpful to me. No one needed to spend a penny to support us. I have consistently felt guilty at some of the things friends, family and colleagues have done. But I also know we would do the same (or at least try to). And while we hope to never have an opportunity to help the people that have helped us under similar circumstances, paying it forward (in many different respects) is very important.
Many people have asked throughout if there was a specific cancer-related charity that we became involved in as they were interested in making a donation. I thought a lot about this over many months. There are so many wonderful charities dedicated to cancer research and/or helping people through treatments. Whether it be The Leukemia & Lymphoma Society, The Jimmy V. Foundation, Sager Strong Foundation, Leukemia Fighters, American Cancer Society, St. Jude, Stand Up To Cancer, LiveStrong, Tina’s Wish, the list is quite long. We support many of these organizations (as does my firm) — as well as our friends who are personally involved — and we will continue to do so. But doing something on a smaller scale and little more personal was something I was interested in thinking through. With some directional guidance from Evan, the specifics around Team Suss were hatched.
Created with the help of several people at K&E (led by Nicole), Team Suss, Inc. was incorporated on December 30, 2016. Timing is everything. Team Suss, Inc. is/will be a not-for-profit created with the goal of helping individuals (and families of individuals) who are dealing with T Cell Lymphoblastic Lymphoma. We are going to leave finding a solution for this and all other cancers to the big organizations and focus on raising a few dollars that can directly help a family (or two) get through an incredibly challenging time. We had a team of people that helped us get through this.
Of the approximately 2,000 cases of T Cell Lymphoblastic Lymphoma each year, it is not hard to imagine people across the country who find themselves in difficult circumstances. Whether it be insurance coverage issues or an inability to take a leave of absence from work to either seek treatment or more likely care for a child that is going through treatment; making meals that are incredibly important but nearly impossible to find time for when going back and forth to a hospital (sometimes daily) for treatment; child care or support at home; an extra pair of hands (especially for bigger households); spending money if there is no income during this time; a dinner out with friends for mental health; the list goes on and on and on. Just like the list of little and big things that people did for us over these last eight months, I am certain there is a parade of horribles list that others going through this can pull together just as quickly. Again, the hope is to raise a few dollars to shorten the list of challenges for one or two families each year. We are also in a position to share some lessons learned and there is no reason for a child, young adult or adult going though a similar battle to not get the benefit of our personal experience (if they are interested).
Team Suss, Inc. is incorporated. The plan is to put together a website (hopefully we can figure out a way to be one of the first hits when someone types T Cell Lymphoblastic Lymphoma into a search engine) and start discussing with various doctors/hospitals how best to reach patients or those recently diagnosed. Lots of people have indicated an interest in getting involved, which we very much appreciate.
If you are reading this, you are part of the reason we are in a position to create something like this and hopefully help a few families/people along the way.
Thank you for your support and friendship. Again, we are forever humbled and grateful.
[Just a few of the pics people sent with bracelets. Lots of these are Russell K. traveling on business in many places (domestic and international)! The kids’ belong to a few of my good buddies from college. One arm is mine in December 2016 (if you look closely, you can figure it out). Some I cannot remember (although Joel E. dressed up in Cleveland gear heading into the NBA Finals is hard to forget). And the last one is Steph S. (one of “our” closest friends) showing off her summer tan. I have proof (from her) that this very bracelet was thrown in the ocean this past weekend, but that’s ok — we have more. (As I finish this, a Neulasta Onpro commercial is playing on the TV in the background; constant reminders…..).]
Friday, December 30, 2016 [started this on Wednesday, wrote a little more Thursday am, but ran out of gas in both instances…].
[NOTE: Most of this was written on Wednesday (12/28). It was unclear on Wednesday when I would be leaving the hospital. We were incredibly frustrated and disappointed after having arrived on Christmas eve. After all, when we cancelled our travel plans for December (leaving on December 24 and coming home today, December 30), we had just learned the protocol would run through mid December (this was over the summer). Although the Dr. said traveling was not out the question at the time, she suggested we stay close; we decided just to stay home. Jen planned a special week for the boys; we told them that Zika necessitated us staying in NY, NJ and Philadelphia.
Who would have ever imagined I would have vacationed for the exact the same time at NY Presbyterian / Weill Cornell?? As I finish this post on Friday morning at 8:15 a.m., I just had my temperature and blood taken (yet again). I have not had a fever since Wednesday evening around 6:00 p.m. I will be leaving after the team on call does morning rounds. 6 nights and 5 days (the same as our cancelled family vacation!). Jen and I have joked with friends all week that I do nothing “half-ass,” so why would “the end” be any different? I saved the second longest overnight hospital stay of these eight plus months (and we are close to or in the double digits for overnight stays), for when I was cancer free and done with chemo. And while this might be easier said now (as I pack things up to get out of here), this was not a big deal and I am glad to have been here: having a consistent 102 fever for several days when you have no white blood cells (because they beat the crap of you for months) is not a time to mess around. Nor do you have energy to do much of anything. I didn’t leave the room or walk around until yesterday. This was a first for me (during what we hope is our last stay).
What follows is a post that I have been writing off and on for a few days. Hopefully not confusing. I am not frustrated (or disappointed) as I type right now, but when I started writing this, we were very frustrated and very disappointed.]
I am not a huge fan of firework shows. I don’t necessarily dislike fireworks, but I always find myself craving the “Grand Finale” for at least two reasons: (1) the rest of the show is just build-up; and (2) it means the show is over. The grand finale brings it all together and is all you need to see within 2-3 minutes. Sometimes I wonder why they don’t just skip to the end and call it a day? I always find myself trying to predict when the finale will start, usually because the rest of the show is boring. And once it is done, it’s time to go (again, I don’t love firework shows).
Firework shows are not that much different from hospital stays (although I would much prefer to see a firework show). After many hospital stays over the last eight months, I am hopeful this current stay is the last one — the “Grand Finale” if you will. Having finished chemo last week Wednesday, this was supposed to be a recovery week ahead of a return to normalcy and the maintenance regime. We have incorrectly predicted the end of this hospital stay so many times, that I have given up “guessing.” I am here until the fever is gone for at least 24 hours. Whenever that is, it is.
[This has been disappointing and incredibly frustrating for us. But being this close to the goal line, being safe and spending an extra few days at the hospital is undoubtedly the right (and ONLY) approach. Does it make any of this easier? Of course not. But I will take disappointing and frustrating over the alternatives all day long. And if the goal posts move again –and we have to push back previously set goals and target dates — we will deal with it. Right now the focus is on getting rid of this fever and then recovering. A good problem to have.]
Lots of people have asked us if this stay was unexpected. The answer is yes and no. Whenever your white blood cell count is as low as mine was (and you are “neutropenic”), you do not have an immune system that is able to fight off infections. So if you are exposed to something, it is likely you run a fever and you must come to the hospital immediately (this is why I go on “house arrest,” take my temperature as often as Cameron in Ferris Bueller’s Day Off, and generally try to stay away from everyone, including Jen and the kids).
I have been neutropenic (as a result of cumulative chemotherapy) several times, including for more than 2 weeks right before we started this last 43 day phase of the protocol. I have had a neutropenic fever (over 100.4) on two separate occasions, each necessitating a run to the ER (Evan — you should start an ER service out of Scarsdale). Once over the summer (I was here for 2 nights and they determined I had “para influenza” (i.e., a common cold)) and Saturday night. Although I was neutropenic when I arrived here on Saturday, by Monday the Nuelasta shot (that I received last Wednesday) had kicked-in and my white blood cell counts have recovered significantly (0.4 on Saturday; 5.3 on Monday night; 13.7 on Wednesday am; and 15.4 yesterday (which is off the charts)) [Some of the side effects from Nuelasta, as we have read on the internet, are fevers and headaches. Who knows….]. I have had a few blood transfusions over the last couple of days (some interesting stories on a standalone basis…..), and my red blood cell count is starting to recover. Any my platelet count is on the rise (10,000 on Saturday; 59,000 on Wednesday; 75,000 on Thursday).
The problem is I have had a fever and headache since Saturday, and neither is [was] going away. So far, there are no answers as to why I have had an ongoing fever and headache; every test has come back negative thus far. It could be from dozens of different things. But until you are fever free for 24 hour straight hours, you must be in the hospital, on IV antibiotics and have blood cultures each and every time you spike a fever (even when you have no veins or access points). On Tuesday night, and again Wednesday morning, my fever was 103 and 102.7. [My last fever was on Wednesday at 6:00 p.m.; it was over 101 but it broke quickly.]
I usually am up and about at the hospital, walking around the halls, looking for snacks, chatting with willing people in the halls. This has been the only hospital stay where I have not left my room [until yesterday (Thursday) afternoon]. I have barely been out of bed. Even taking a shower is a challenge. [Two days ago, I got lightheaded in the shower and had to cut-it off early. But I did shave my head before that shower with an electric razor (quite a chore), which took a long time because I had waited several days in between, so that might explain things]. Plus I have a rash all over (which could be viral and explain the fever), and have spent a good amount of time in the bathroom after getting loaded up on meds to “help.” Do I complain? Of course. But I am not complaining (if that makes sense). I am (trying) to keep everything in perspective, and we know that this will resolve itself. Just a question of time. Nothing has otherwise changed — and that is a good thing.
And as always, there are silver linings everywhere.
Morning rounds just finished. I’m out. The firework show is over (and the grand finale, kind of like my last chemo treatment, was anti-climatic). Feels just like the end of a real fireworks show. And I am always happy to leave. The lingering headache is just a function of the nasty virus that had me laid up for 6 days. No fever and all counts recovered, so time to go home. They even said have a “great time on New Year’s.” When I asked about restrictions, including movie theaters etc. (I need to take Jake to see Rogue One), they said “you can go wherever you want.”
Time to start the recovery process. Albeit a week later than expected, when I am home now I don’t need to worry about getting a temperature while neutropenic. One day at a time. But let’s get it on.
Saturday December 24, 2016 [but not finished until December 25, 2016]. Merry Christmas and Happy Chanukah. About time it all happened (started) on the same night.
[Disclaimer (and to be sure the reference to two dates above are not confusing): when I refer to “today” I am referencing December 24, 2016. All events described below — with the exception of a few that actually happened on the current day (December 25th, as described in point 10 below ) — occurred on December 24th.]
Today was my third day of house arrest, but the first time I left the house since Wednesday when this was (supposedly) all over. I say supposedly, but I knew that there was going to be a significant recovery time. It took 10 days for my blood counts to recover after the last 43 day cycle (and before we could start the next cycle (three days more than I was planning, which was frustrating but obviously OK)). I am hoping for shorter this time, but I am realistic and understand that the recovery process is a blessing. My plan is to start back life on January 3. I am going to shave and attempt to go to the office. But everything is “play it by ear.” I am now realistic (we will see how long that lasts in January). I also know that if I over do it, there is nothing good that will come of it. I have not been active for eight months. This will NOT be like riding bike. Again, a blessing.
I say Full Circle (But Not Quite), for a bunch of reasons.
Friday, December 23, 2016. Full after eating Jackson Hole, I was rolled to the North corner of the 10th floor (Room 214) late in the evening on Sunday, May 1, 2016. [I would ultimately stay here for 12 days.] As I was wheeled to my room, with a few good friends in tow carrying my current belongings, we got to see most of the 10th floor “oncology wing.” A few patients were out and about, but it was generally quiet. There was no doubt this was totally different from the 14th floor (which, again, was not “real.”). This was real. Everyone here had cancer. [And that became more and more apparent as the days went by.] There was coughing and wheezing as I was rolled past the rooms, and I saw nurses’ aides walking in an out with medications and blood pressure checks. I thought and said out loud that “sh&t just got real.”
At that point we made it to my room tucked away in the corner right next to a patient/guest lounge area with couches and a television. The room was huge. Couches and tables, lots of chairs, good nightstand, large closet, decent bathroom and a little “work station” where I could set up my laptop. After my friends took off, I started getting myself organized (something I do wherever I go, whether it be a hotel, my home or the office). The next morning Jen and my Mom started stocking me with new sweat pants (I had only had a pair or two before all of this) and some t-shirts to wear around the room (everyone was sick of my Lehigh and Cornell t-shirts, which I have been wearing every weekend for 15 years (and still do)). We had friends send and bring me blankets and slippers [I am wearing the same slippers as I type this.] If I was going to be here for 3ish weeks, I was going to try to get comfortable and make the most of it. And that is exactly what I did.
I made myself at home. Jen ordered me lots of drinks to stay hydrated (some good, some bad). I kept food in the fridge. I ate meals at the kitchen table. I had a recliner chair with an effective desk where I would sit for hours in the middle of the night reading and responding to emails. The hospital brought me an exercise bike because I was tired of doing laps in the hall after a few days (there were signs everywhere that said “Walk to Health,” so I walked in the morning, mid-day and at night as I felt good most of the time). People on the floor knew it was time for my walk and I made sure to say hello to people as I walked by. [One guy that was changing bed sheets (I had said hello to before) stopped me in the middle of my walk on the second or third night, and said he wanted to ask me an inappropriate question. I said no problem (although I wasn’t sure what was coming). He asked me what I was doing at the hospital. He said I didn’t look sick at all. At that point I told him I didn’t feel sick either, but I explained the situation. We spoke a bunch over the next couple of weeks, including about some ideas he had to start a business (I listened more than talked).]
I met a bunch of other patients on the morning and afternoon walks too (each person had some type of leukemia or lymphoma and everyone was in the hospital either at the beginning of their treatments or because they needed a serious procedure; and not everyone was in good spirits). [I actually ran into two people on Wednesday in the infusion center that I had met and become friendly with in early May. One was doing OK (he had a stem cell transplant but no chemo), but he is still unable to work because of low white blood counts. The other guy was not doing great and was starting on a new trial to see if something different would work. Good reminder that each person’s cancer is different.]
Other than a few hiccups over the course of 12 days (described below), my nearly two weeks on the 10th floor will be remembered for the steady stream of visitors and outpouring of support from so many people in different places. All of which made me think much less about being in the hospital and the suggested six months of treatments ahead. It was all still raw and not totally real, but I certainly felt like my life had flashed in front of my eyes just a week before. [Strange to be writing this now, eight months later, with my head intact and in a position to be back on my feet in 2017 and beyond.] And, of course, I missed my kids (and Jen) and not living at home. We did a bunch of “strategic” face times, always when I was feeling great. But never a replacement for being home.
Truth be told, by the end of my stay on the 10th floor (which was extended because I ran a fever), I was so comfortable that I told Jen and my Dr.’s team that I was worried/nervous about going home too early (it was my first time being neutropenic and I had to get injections before I left). Which frankly scared me a little as I was incredibly conflicted. The doctors pushed me, however, and we went home on Friday, May 13, 2016 — just 16 days after being admitted to the hospital. When we left, I felt good and had all sorts of plans (together with a bunch of promises, many of which were broken) to enjoy the summer. [We obviously did not appreciate that the “protocol” would run through December 21. And I was feeling good with minimal side effects, so dI did not embrace that it would get worse than the “induction” phase. Not a big deal at the end of the day and I would take the same results 10/10 times, I’m just calling balls and strikes…]
What follows are some of the highlights of my 12 days on the 10th floor at NY Presbyterian in May 2016. The visits, emails, texts and phone calls from family, friends, partners and colleagues will define those 16 days in the hospital (and these eight months more generally) much more than the mouth sores, horrible constipation from mediation (that required attention from the doctors and then the nurses!) or my first spinal tap. And while I can’t sit here and thank each and everyone person that got in touch or came to visit, I feel like I remember and do not plan to forget, each call, e-mail, text and visit. We are incredibly appreciative for the outreach and support because that was what this all
was — not the cancer.
Thursday, December 22, 2016. I have been analyzing, marking-up, highlighting (don’t know why), generally staring at and preparing calendars for the “IRB Protocol” one-pager that I received in July (my copy is below).
For those keeping score, the protocol is over. We stayed the course and got through it. [That is not to say there weren’t moments when even our Dr. suggested that we might need to try a transplant instead of continuing the protocol if the many side effects, including blood clots, cholesterol etc., could not controlled. But we never wavered and it is now done. And getting through the protocol is the best way to address this cancer.] All intense phases of treatment, totaling almost eight months, are complete: Induction, Phase I (April 27- May 30), Intensification, Phase II (June 1-July 18), Intensification 1 /Re-Induction 1 (July 27-October 3), and Intensification II, Re-Induction II (October 13-December 21).
People often ask about “rounds” of chemo. I never really approached it as rounds. For me, it was one long round with hundreds of jabs to the face, body blows and just a couple of short knockdowns. Today, while certainly not feeling — and definitely not looking — like a million bucks, I am standing and ready (almost) to move forward. It’s definitely going to take some time to get back into fighting shape. And I fully appreciate it is a marathon not a sprint.
After touching this one-pager so many times that it literally could fall apart at any moment — sometimes hoping to see something, like a short-cut, that never appeared — I took out my black sharpie this morning and drew the “X” that you see below through most everything (with the exception of the “Maintenance” reference at the bottom of the page, which we know will begin once I recover). I’m not a user of the “X” (on calendars or otherwise), but this just felt so right and so good.
I definitely did not shoot 100% from the floor over the course of these eight months (I have missed a day of pills here or there, and taken a night or two off from the approximately 280 Lovenox shots that I self injected into my stomach (if I was way too bruised or way too tired). But we came pretty damn close (and I say we because the only times I missed anything was when Jen was out somewhere and otherwise didn’t make sure I was doing what I needed to do). We never missed or had to reschedule a treatment and we always pushed to get each phase started just as soon as we could. And while I don’t think there ever was a doubt that we would get through the protocol, it’s over and I like looking at that “X.”
Couple of shots from yesterday, including me with a face mask on. Notwithstanding that I have been neutropenic many times in the past, I am paranoid at this point about getting an infection or otherwise getting sick (because I have no neutrophils at the moment from all of the chemo), so I wore a face mask for the first time in eight months yesterday. It is uncomfortable, hot and one can hear what you are saying. Other than potentially this weekend (when I need to go in for more blood and platelets), I don’t plan on wearing a face mask again. The other shot (care of Nicole) is me getting the last drip of chemo on the IRB protocol (vincristine). As for the beard, it started growing in again a few weeks ago. My current plan is to shave the morning of January 3, 2017. Right before I leave for the office. [By that time, the swelling in my face (and feet and cankles) should be reduced, as Tuesday was my last day of Thioguanine chemo pills.]
Wednesday, December 21, 2016. I met my brother-in-law Brad about 15 years ago. He was a senior in high school. His oldest sister had invited me home (to Philadelphia) for the Jewish holidays (I was in my last year of law school; Jen a year behind). I am notorious for overpacking but always forgetting something important. For my first trip to the Nelson’s house, it was my underwear. Brad got home from tennis practice right after I finished taking a shower and I was in the process of helping myself to Brad’s underwear drawer. I was in a towel, rifling through the kid’s underwear (there was lots to choose from). Brad walked into his room looking dazed and confused as he proceeded to introduce himself. [I told the more detailed version of this story many years later when I was the best man in Brad’s and Julie’s wedding.] The rest is history…..
Brad has a heart of gold and is all about family. For many mornings over the last eight months, Jen and I woke up to the “Song of the Day,” included in an e-mail from Brad with the artist, title, a link to the video, and the best quote from the day’s song. [Like my blog posts, Brad came charging out of the gates, slowed down as we got deeper and deeper into the grind, and picked up steam here at the end.] Most of the time I knew the song. There were a lot of times I sang out loud. But every time one of these e-mails from Brad came through, I always smiled. Sometimes the song had a lot of meaning and depending on the day, I might choke me up. Other times there were songs that I think Brad just liked (you will know it when you see it). It never really mattered to me or Jen.
After sending us the last installment early this am (“Closing Time” by Semisonic), Brad also sent me the full “play list.” I thought it made sense to share. Artist, titles, video links (at the end of each song title), and the important quotes selected by Brad all included below. There are even some notes from Brad regarding the particular day he was sending the song.
I’m not sure I am going to post again tonight. I actually think I may fall asleep. Last night I slept about 1.5 hours (from 2-3:30 a.m.). Jen is hoping I sleep too as I have a knack for making sure (not necessarily on purpose) that she sleeps the same amount as me.
Today I finished the eight-month protocol. No more chemo in 2016. Feels good to say that. But not sure it has fully registered (notwithstanding how long we have been waiting for today). There is no doubt my inability to sleep (last night and the last several weeks) is directly related to the fact that we get to “un-pause” so many things in our lives as soon as I recover. And I am pretty banged up at the moment, which is expected after eight months of chemo and nine treatments in 14 days. In fact, while the “last” chemo treatment was done hours ago, I am typing this from the infusion center where the second bag of blood is just about empty. I also needed a bag of platlets and a Neulasta Onpro contraption put onto my arm (to help create white bloods, of which I have zero at the moment).
Wait, the machine just beeped. It’s done. Gas tank refilled. Chemo over. I am getting my ass out of here (until next week when I need my counts checked). More to come……
Pearl Jam – Just Breathe.
“Oh I’m a lucky man, to count on both hands the ones I love. Some folks just have one, yeah, others they’ve got none.”
Lynyrd Skynyrd – Simple Man.
“Oh, take your time, don’t live too fast. Troubles will come and they will pass. You’ll find a woman and you’ll find love. And don’t forget, son, there is someone up above
Bon Jovi – We Weren’t Born To Follow.
“We weren’t born to follow. Come on and get up off your knees. When life is a bitter pill to swallow. You gotta hold on to what you believe.”
Van Halen – Right Now.
“Don’t wanna wait til tomorrow, why put it off another day? One more walk through problems, built up, and stand in our way. One step ahead, one step behind me. Now you gotta run to get even. Make future plans, don’t dream about yesterday”
Tom Petty – Learning To Fly.
“Well some say life will beat you down. Break your heart, steal your crown. So I’ve started out for God knows where. I guess I’ll know when I get there”
Creadance Clearwater Revival – Long As I Can See The Light.
“Though I’m going, going, I’ll be coming home soon. Long as I can see he light.”
Bruce Springsteen – Land of Hope and Dreams.
“Well, I will provide for you. And I’ll stand by your side. You’ll need a good companion now. For this part of the ride. Leave behind your sorrows. Let this day be the last. Tomorrow there’ll be sunshine. And all this darkness past”
Grateful Dead – Touch of Grey.
“Sorry that you feel that way, The only thing there is to say, Every silver lining’s got a….Touch of grey”
Bruce Springsteen – Prove It All Night.
“Everybody’s got a hunger, a hunger they can’t resist, There’s so much that you want, you deserve much more than this”
Pearl Jam – Love Boat Captain.
“Is this just another phase? Earthquakes making waves. Trying to shake the cancer off? Stupid human beings. Once you hold the hand of love…it’s all surmountable.”
Tom Petty – Won’t Back Down.
“Well I won’t back down, no I won’t back down. You could stand me up at the gates of hell. But I won’t back down.”
Beatles – Let It Be https://youtu.be/rsxUDjfhj5Y
“And when the night is cloudy, There is still a light that shines on me. Shine on until tomorrow, let it be.”
Guns N Roses – Welcome To The Jungle.
“Welcome to the jungle we take it day by day. If you want it you’re gonna bleed but it’s the price you pay.”
Bruce Springsteen – The Rising.
“Can’t see nothin’ in front of me. Can’t see nothin’ coming up behind. I make my way through this darkness. I can’t feel nothing but this chain that binds me. Lost track of how far I’ve gone. How far I’ve gone, how high I’ve climbed. On my back’s a sixty pound stone. On my shoulder a half mile line”
Aerosmith – Dream On (ESPN Top Sports Moments).
“Yeah, I know nobody knows, Where it comes and where it goes, I know it’s everybody’s sin, You got to lose to know how to win”
Pearl Jam – Love Boat Captain (Performance dedicated to a Joshua).
I know I already sent this to you, but this is the performance I told you about where he dedicates it to Joshua. “Trying to shake this cancer off!!!!”
Red Hot Chili Peppers – Dark Necessities.
“Coming out to the light of day. We got many moons than a deeper place. So I keep an eye on the shadow’s smile. To see what it has to say.”
James Taylor – You’ve Got A Friend.
“You just call out my name, and you know where ever I am. I’ll come running to see you again. Winter, spring, summer, or fall, all you have to do is call and I’ll be there, yeah, yeah, you’ve got a friend.”
R Kelly – I Believe I Can Fly.
“If I can see it, then I can do it. If I just believe it, there’s nothing to it.”
David Cook – Dream Big.
“But if u dont dream big whats the use in dreaming. If u don’t have faith theres nothing worth believing. It takes one hope to make the stars worth reaching for. So reach out, for something more.”
Will Smith – Summertime.
“Summer, summer, summertime. Time to sit back and unwind.”
Bob Marley – Three Little Birds.
“Don’t worry about a thing, ‘Cause every little thing gonna be all right.”
John Lennon – Imagine.
“Imagine there’s no heaven, It’s easy if you try. No hell below us. Above us only sky. Imagine all the people. Living for today.”
Pearl Jam – In Hiding.
“It’s been about three days now, Since I’ve been aground. No longer overwhelmed and it seems so simple now. It’s funny when things change so much. It’s all state of mind.”
Daughtry – No Surprise.
“I’ve practiced this for hours, gone round and round. And now I think that I’ve got it all down. And as I say it louder, I love how it sounds. ‘Cause I’m not taking the easy way out.”
Eminem – Lose Yourself.
“If you had, one shot, or one opportunity. To seize everything you ever wanted. In one moment. Would you capture it, or just let it slip?”
Michael Jackson – Beat It.
“You better run, you better do what you can. Don’t wanna see no blood, don’t be a macho man. You wanna be tough, better do what you can. So beat it, but you wanna be bad. Just beat it, beat it.”
Nas & Damian Marley – Strong Will Continue.
“Come we’ve got a journey to go. And when the battle get sour and dread. A lot of weak are to wither and moan. Only the strong will continue. I know you have it in you.”
David Lee Murphy – Dust On The Bottle.
“You’re still with me, and we’ve made some memories. After all these years there’s one thing I’ve found. Some say good love, well, it’s like a fine wine. It keeps getting better as the days go by”
Twisted Sister – We’re Not Gonna Take It.
“We’ve got the right to choose and, there ain’t no way we’ll lose it. This is our life, this is our song.”
Grateful Dead – Ripple.
“There is a road, no simple highway, Between the dawn and the dark of night, And if you go no one may follow, That path is for your steps alone.”
Beatles – Long and Winding Road.
“The long and winding road that leads to your door, Will never disappear. I’ve seen that road before it always leads me here. Leads me to your door”
Bon Jovi – It’s My Life.
“It’s my life. It’s now or never. I ain’t gonna live forever. I just want to live while I’m alive.”
Maroon 5 – Harder To Breathe.
“When it gets cold outside and you got nobody to love. You’ll understand what I mean when I say. There’s no way we’re gonna give up. And like a little girl cries in the face of a monster that lives in her dreams. Is there anyone out there ’cause it’s getting harder and harder to breathe.”
Counting Crows – A Long December.
“And it’s been a long December and there’s reason to believe, Maybe this year will be better than the last. I can’t remember all the times I tried to tell my myself, To hold on to these moments as they pass.”
Red Hot Chili Peppers – Under A Bridge.
“I don’t ever want to feel, Like I did that day. Take me to the place I love. Take me all the way.”
Eminem – I’m Not Afraid.
“I’m not afraid, To take a stand. Everybody. Come take my hand. We’ll walk this road together, through the storm, Whatever weather, cold or warm. Just letting you know that you’re not alone.”
Queen – Bohemian Rhapsody.
“Is this the real life? Is this just fantasy? Caught in a landslide, No escape from reality.”
Live – Beauty of Grey. https://www.youtube.com/watch?v=iQy-Vk2RmcQ
“This is not a black and white world. To be alive, I say that the colours must swirl. And I believe, That maybe today, We will all get to appreciate…The Beauty of Grey”
Michael Jackson – Scream.
“Peek in the shadow, Come into the light, You tell me I’m wrong, Then you better prove you’re right, You’re sellin’ out souls but, I care about mine, I’ve got to get stronger, And I won’t give up the fight.”
Red Hot Chili Peppers – The Getaway.
“That’s right you’re right, We will do our thing tonight alright, Take me through the future, It’s time you’re fine”
Red Hot Chili Peppers – Million Miles of Water.
“Broke down, I found. Even when you think you need a rest. You will live to fight another round. I know its too bad, so sad. All the things that we could’ve been and could’ve had”
Oasis – Wonderwall.
“Today is gonna be the day, That they’re gonna throw it back to you, By now you should’ve somehow, Realized what you gotta do”
Grateful Dead – Deal.
“Since it cost a lot to win and even more to lose. You and me bound to spend some time wondering what to choose”
Queen – We Are The Champions (sent day after Cavs won NBA championship).
God is with us. Believe Land.
“I’ve paid my dues. Time after time. I’ve done my sentence But committed no crime. And bad mistakes ‒ I’ve made a few. I’ve had my share of sand kicked in my face But I’ve come through. And I need just go on and on, and on, and on We are the champions, my friends, And we’ll keep on fighting ’til the end. We are the champions. We are the champions. No time for losers. ‘Cause we are the champions of the world.”
Live – Pain Lies On The Riverside.
“You’ve got to learn to live until no end now. But first you must learn to swim all over again”
Bruce Springsteen – Waitin’ On A Sunny Day.
“It’s rainin’ but there ain’t a cloud in the sky. Musta been a tear from your eye. Everything’ll be okay”
Pearl Jam – Even Flow.
“Even flow, Thoughts arrive like butterflies, Oh he don’t know, So he chases them away, Someday yet he’ll begin his life again”
Allan Sherman – Hello Muddah, Hello Fadduh (day Jake left for camp).
“Hello Muddah, hello Fadduh, Here I am at Camp Grenada, Camp is very entertaining and they say we’ll have some fun if it stops raining.”
Grateful Dead – Uncle John’s Band.
“Well the first days are the hardest days, don’t you worry any more, ‘Cause when life looks like Easy Street, there is danger at your door.”
R.E.M. – Stand.
“Stand in the place where you live, Now face north, Think about direction, Wonder why you haven’t before”
Peter Gabriel – Don’t Give Up.
“rest your head, you worry too much, it’s going to be alright, when times get rough, you can fall back on us, don’t give up”
Bee Gees – Stayin’ Alive.
“Well now, I get low and I get high, And if I can’t get either, I really try. Got the wings of heaven on my shoes. I’m a dancin’ man and I just can’t lose.”
Grateful Dead – The Wheel.
“The wheel is turning and you can’t slow down. You can’t let go and you can’t hold on. You can’t go back and you can’t stand still. If the thunder don’t get you then the lightning will”
Survivor – Eye of the Tiger.
“Rising up, back on the street, Did my time, took my chances. Went the distance, now I’m back on my feet. Just a man and his will to survive”
Harvey Danger – Flagpole Sitta.
“I’m not sick but I’m not well. And I’m so hot ’cause I’m in Hell. I’m not sick but I’m not well. And it’s a sin to live so well”
Neil Young – Keep on Rockin’ in the Free World.
“Got a man of the people, says keep hope alive. Got fuel to burn, got roads to drive.”
Bruce Springsteen – American Land (sent on July 4th).
“There’s treasure for the taking, for any hard working man, Who will make his home in the American Land”
Red Hot Chili Peppers – Soul to Squeeze.
“Where I go I just don’t know, I got to, got to, gotta take it slow. When I find my piece of mind, I’m gonna give you some of my good time.”
Maroon 5 – She Will Be Loved.
“It’s not always rainbows and butterflies, It’s compromise that moves us along yeah, My heart is full, and my door’s always open, You can come anytime you want”
Black Eyed Peas – I Gotta Feeling.
“Let’s paint the town, We’ll shut it down, Let’s burn the roof, And then we’ll do it again”
Live – Heaven.
“I sit with them all night, everything they say is right, but in the morning they were wrong, I’ll be right by your side, come hell or water high, down any road you choose to roam”
Bruce Springsteen – The Rising.
“Lost track of how far I’ve gone, How far I’ve gone, how high I’ve climbed, On my back’s a sixty pound stone, On my shoulder a half mile line”
Grateful Dead – Mississippi Half-Step Uptown Toodaloo.
“All you got to live for is what you left behind”
Sum 41 – In Too Deep.
“Cause I’m in too deep, and I’m trying to keep, Up above in my head, instead of going under”
Counting Crows – Round Here.
“And in between the moon and you, The angels get a better view, Of the crumbling difference between wrong and right.”
Britney Spears – Stronger.
“Stronger, than yesterday, Now it’s nothing but my way, My loneliness ain’t killing me no more, I, I’m stronger”
Green Day – Good Riddance (Time of Your Life).
“Another turning point, a fork stuck in the road. Time grabs you by the wrist, directs you where to go. So make the best of this test, and don’t ask why. It’s not a question, but a lesson learned in time”
Bruce Springsteen – Glory Days.
“Glory days, well they’ll pass you by. Glory days, in the wink of a young girl’s eye. Glory days”
Steve Miller Band – Fly LIke An Eagle.
“I want to fly like an eagle, to the sea. Fly like an eagle, Let my spirit carry me. I want to fly (oh, yeah). Fly right into the future”
Bob Seger – Against The Wind.
“Wish I didn’t know now what I didn’t know then.”
Counting Crows – Big Yellow Taxi.
“Don’t it always seem to go, That you don’t know what you got ’til it’s gone”
Coldplay – The Scientist.
“Nobody said it was easy, It’s such a shame for us to part, Nobody said it was easy, No one ever said it would be this hard”
50 Cent – Hate It or Love It.
“Hate it or love it the underdog’s on top, And I’m gonna shine homie until my heart stop”
Bruce Springsteen – We Take Care of Our Own.
No caption necessary, song speaks for itself.
Notorious B.I.G. – Juicy.
“You know very well who you are, Don’t let em hold you down, reach for the stars”
Troy Ave – Doo Doo.
“To the people who thought I was gonna flop. Ya’ll a part of the reason I ain’t gonna stop. Against the odds, I went hard until I popped. Came from the bottom and now I’m standing on top”
Smash Mouth – All-Star.
“So much to do, so much to see, So what’s wrong with taking the back streets? You’ll never know if you don’t go, You’ll never shine if you don’t glow”
Green Day – Basket Case.
“Do you have the time, to listen to me whine, about nothing and everything, all at once. I am one of those, melodramatic fools, neurotic to the bone, no doubt about it.”
The Offspring – Self Esteem.
“The more you suffer, The more it shows you really care. Right? Yeah, yeah, yeah”
Eminem – Till I Collapse.
“Feel weak, and when you feel weak, you feel like you wanna just give up. But you gotta search within you, you gotta find that inner strength. And just pull that shit out of you and get that motivation to not give up. And not be a quitter, no matter how bad you wanna just fall flat on your face and collapse.”
Rolling Stones – I Can’t Get No Satisfaction.
“Cause you see I’m on losing streak. I can’t get no, oh no no no. Hey hey hey, that’s what I say. I can’t get no, I can’t get no. I can’t get no satisfaction. No satisfaction, no satisfaction, no satisfaction”
Grateful Dead – Wharf Rat.
“But I’ll get back on my feet again someday, The good Lord willin’, if He says I may. I know that the life i’m livin’s no good, I’ll get a new start, live the life I should.”
Beatles – All You Need Is Love.
“There’s nothing you can do that can’t be done, Nothing you can sing that can’t be sung, Nothing you can say but you can learn how to play the game, It’s easy”
Fleetwood Mac – Don’t Stop.
“If you wake up and don’t want to smile, If it takes just a little while, Open your eyes and look at the day, You’ll see things in a different way.”
Michael Jackson – Man In The Mirror.
“I’m Gonna Make A Change, For Once In My Life. It’s Gonna Feel Real Good, Gonna Make A Difference. Gonna Make It Right
Traveling Wilburys – Heading for the Light.
“Been close to the edge, hanging by my fingernails. I’ve rolled and I’ve tumbled through the roses and the thorns. And I couldn’t see the sign that warned me, I’m Heading for the light”
Marc Cohn – True Companion (sent on Jen/Josh wedding anniversary).
Guns N Roses – Patience.
“It’ll work itself out fine. All we need is just a little patience”
Beatles – Here Comes The Sun.
“Here comes the sun. Here comes the sun, and I say, It’s all right. It’s all right”
Counting Crows – A Long December (sent on December 1st, 3 weeks left of chemo).
“A long December and there’s reason to believe, Maybe this year will be better than the last”
Barenaked Ladies – One Week (sent with 1 week left of chemo).
No caption necessary
Bob Seger – Turn The Page.
“When you’re ridin’ sixteen hours, And there’s nothin’ much to do, And you don’t feel much like ridin’, You just wish the trip was through. Here I am, On the road again. There I am, Up on the stage. Here I go, Playin’ star again. There I go, Turn the page”
Bruce Springsteen – When You Need Me.
“When you need me call my name. ‘Cause without you my life just isn’t the same. ‘Cause when this world kicked me around. Baby, you picked me up off the ground. So if you need me I’ll be there”
Grateful Dead – One More Saturday Night (sent on last Saturday of treatment).
“Then God way up in heaven, for whatever it was worth, Thought He’d have a big old party, thought He’d call it planet Earth. Don’t worry about tomorrow, Lord, you’ll know it when it comes, When the rock and roll music meets the risin’ sun.”
Van Morrison – Days Like This.
“When you don’t need an answer there’ll be days like this. When you don’t meet a chancer there’ll be days like this . When all the parts of the puzzle start to look like they fit. Then I must remember there’ll be days like this.”
Jay Z – Young Forever.
“Fear not when, fear not why, Fear not much while were alive, Life is for living not living up tight”
Linkin Park – In The End (sent on day before last day treatment).
“Time is a valuable thing. Watch it fly by as the pendulum swings. Watch it count down to the end of the day. The clock ticks life away.”
Semisonic – Closing Time (sent on last day of treatment).
“Every new beginning comes from some other beginning’s end.”
Tuesday, December 20, 2016. This post is a long time in the making. A post I intended to write months ago. But things happen when they happen.
My first post was on May 13, 2016 — the day I got home from the hospital. I am not even sure I had decided I was actually going to post something before I got home that day. In any event, “Chapter 1,” which details our first day and night at the hospital (April 27, 2016), was posted on June 1, 2016. Many details from the 16 days we spent in the hospital for the “induction” phase — on both the 14th (Chapter 2) and 10th floors (Chapter 2.5, which will follow) — are firmly stuck in my brain.
I stayed on the 14th floor on Wednesday night, Thursday, Friday, Saturday and Sunday (through the evening). Late on Saturday (April 30) they told us one of the few private rooms on the 10th floor was going to open up on Sunday night. The 10th floor is the Oncology floor, with a dedicated team of doctors and nurses. This made total sense to me and was my preference all along. I just could not get my head around sharing a room and bathroom with someone else that I didn’t know for 3-4 weeks under these circumstances, so we stayed on the 14th floor the first couple of days because that was the only option if I wanted my own room. [May was actually the only time that a room on the 10th floor was available at any time we stayed in the hospital; the private rooms on 10 are usually reserved for people that must be alone because they had a transplant etc. In all other instances, it is two to a room]. The 14th floor was nice. And I liked the staff and nurses. They would bring by newspapers in the morning (including my NY Post), the food was good and you could order multiple entrees (which I love to do), there was a great snack closet and they served my father (and anyone else interested) a glass of red wine in the late afternoon (although this was “discontinued” after my initial stay). But the 14th floor was not “real” in the sense that you did not know why someone was staying there (could have been for cancer, elective surgery or anything else in between). [This might have been a good thing at the get-go looking back on it.] My only complaint: there was some glitch in the TV system and I could not get the first round of the NFL draft on the television (Thursday, April 28), which was the only round I really cared about. The hospital got this “fixed” by Friday and I watched more draft coverage then I had in years, including the third round when the Cleveland Browns selected Shon Coleman. Coleman beat acute lymphoblastic leukemia (t-cell lymphoblastic lymphoma gets treated the same way) after being diagnosed in 2010. He watched the draft at St. Jude’s Research Hospital.
Jen slept over Wednesday night. And we had lots of family around before we went to sleep. [My brother-in-law Justin came by that night with a bottle of MaCallan; I told him it probably made most sense for him to take it home with him and we would drink it together when this was all over…] By the morning (even though I had barely slept that first night), the pain from the procedure the day before had subsided and I was ready for breakfast and a shower. I shaved my head that day (I had not yet been told to stop using a straight edge razor), but I made a conscious decision to let the beard start growing.
I remember Jen being conflicted that morning (as she has been throughout these past 8 months). She wanted to stay with me, but she had not seen the boys in 24 hours. [Truth be told, Jen is never really “conflicted.” She knows what the right answer is and always goes with her gut, but that doesn’t mean she doesn’t feel torn doing it.] And while the kids were in great hands with Helene, Jen knew she needed to be around. Of course I wanted Jen to be there with me, but there has never been a doubt in my mind that she knew exactly what she was doing and I always follow her lead (though I may question her from time to time).
Jen also knew that lots of friends and family were going to come say hello over the next couple of days. So she immediately started figuring out, beginning on April 28, 2016, how to juggle everything — and she has yet to drop a ball. Including making sure that I was NEVER alone at the hospital those first couple of days. I even had my Mom and Uncle Mike sleep over the next two nights! [Uncle Mike really enjoyed the scrambled eggs and bacon the morning after our sleep over. He also scared the crap out of me when he put a Darth Vadar helmet on for his sleep apnea. As I told him, and vividly recall the sounds, the mask did NOT help his snoring (but I wasn’t sleeping much, so it was fine)].
There was a lot to take in during a very short of period of time. I found out I had cancer on Tuesday, was admitted to the hospital to start immediate treatment on Wednesday (for potentially 3-4 weeks), and I was told that I would basically be taking a timeout from life as we know it for “about 6 months.” And then there was the stuff I would find on the internet (which I knew I shouldn’t be reading for a whole host of reasons) in the middle of the night when I couldn’t sleep. A bad habit that I still maintain. But being positive has always been the way I carried myself, and there was no reason to change because of T-Cell Lymphoblastic Lymphoma. In fact, quite the opposite. And I had every reason to be positive. Including how comfortable I felt the moment Dr. Roboz walked in the room, especially after she said that, while this would suck, everything was going to be fine.
Sure, I remember them putting in the first IV’s, getting my first chemo treatment (described below) and staring at the ceiling in the middle of the night, but my 16 days in the hospital — and frankly this entire experience — has been more about the unbelievable support from family, friends (old and new), partners and colleagues than the treatments and what has admittedly been a long grind. And as I sit here describing a 16-day hospital stay to begin a long run of treatment for something I never imagined would have been our 2016 or any year for that matter, what I remember most about the hospital is the emails, texts, phone calls and visits. [I am forever grateful, humbled and appreciative for all of them.] It was euphoric. Which is wild because we were about to start our biggest battle yet (although you don’t even know what you are fighting or what really is about to happen). All the more reason why the support was so important; it kept my attention and focus away from the nonsense, dark thoughts and uncontrollable elements of this horrible disease (and while there was/is plenty of time to think about this “stuff,” you just cannot let it take over). Connecting and reconnecting with so many different people was the best medicine any doctor could have ordered. [I am so lucky to be able to say that and I appreciate that not everyone is as fortunate.] Being someone who loves to tell stories, if you came to visit, you were definitely privy to “live” versions of the blog posts (likely with added color) that describe the lead-up to April 27 (including the (mis)diagnosis). I loved every second of every visit (and there are so many memorable moments, including where people from some of my different worlds collided — and it was never awkward). I loved responding to every text and email, usually for several hours in the middle of the night. I loved the phone calls and conversations that followed. I still do.
I felt good each of those first four days on the 14th floor. Even after three days of chemo. Yes I was on steroids and pain medication. But the “side effects” didn’t kick in until Chapter 2.5. And the reality that I was going to truly hit pause on so many things that were part of my life had not fully registered. I was still following (and included on) all work emails for those first couple of weeks, dialed into a few court hearings from the hospital (just to listen) and I was convinced that I was going to figure out how to get back from this in record time; I did not yet understand that there was a set “protocol,” so no records to be broken. I also had ambitions about doing all sorts of things since I was feeling was fine.
After being connected to fluids (and pain meds) for 24 hours, the first chemo session was on Friday, April 29, 2016. I had been given a calendar for the month of April and May (which I still have), so I knew I would be receiving two chemo treatments on April 29: Daunorubicin and Vincristine. I was also scheduled to get Daunorubicin on both Saturday (April 30th) and Sunday (May 1). In addition, I was started on a high dose of Prednisone (a steroid) for 26 days beginning on April 29 (with a dose of dexamethasone on each of April 27 and 28 in advance of chemo).
Your first chemo session is hard to forget. I also had no idea what chemo really was. I was obviously familiar with cancer and knew it was treated in many instances with chemotherapy, but I didn’t know what was actually involved. There was a special nurse that needed to come to the 14th floor and handle the chemo (appropriately called a chemo nurse). This was the same on the 10th floor. Only a chemo nurse can handle the administration of the treatment. Once she arrived (which was later than we expected and I was getting very antsy), I tried to make some small talk. This chemo nurse was all business. My nurse for the day from the 14th floor was also there, and before I knew it they both started putting on Hazmat suits. As I would learn, this is necessary anytime that chemotherapy is handled (there are actually lots of articles out there on secondhand chemo (thank you Lenny) and the precautions that hospitals are taking to protect people). All of which was amazing to me and makes me shake my head now when I think too much about it. If the people handling the chemo are wearing suits and gloves to avoid touching the poison — I remember not only thinking this but actually saying it out loud (in a joking way) — what did this mean for me if the stuff was actually going into my body? Before getting started, the nurses did a chemo check (which is why they always need two nurses for chemo). The “bag” of chemo (and all bags of chemo) had my name, birthday and patient ID on a label/sticker that was placed on the bag when the chemo was “mixed.” As did my hospital ID band (which you must wear in the hospital or for any out-patient chemo treatment). One nurse read my ID band out loud (“Joshua A. Sussberg, 01/18/1978, 6367752”) and the other cross-checked the bag (same info, so we were good). They asked me to confirm who I was as well. [I didn’t think too much about it at that moment in time, but if you are going to get chemo it definitely makes sense to be certain you get the right one].
After the chemo-check, the chemo nurse “hung” the chemo (I’m a pro now, but when she said was going to hang the chemo I just wasn’t sure what to say), and then ran a small tube from the bag of chemo through the machine on the IV stand and directly into my IV. She pressed a few buttons on the electronic machine fixed to the IV pole and the chemo started dripping. I watched as the tube filled up with the red substance from the bag and made its way into my arm. Kind of weird. Felt a little cold at first. Before I could think too much more about it, it was over. About 40 minutes. The vincristine infusion was next and that was even faster (about 10 minutes). I was waiting to feel something after my first two chemo treatments, but didn’t. Other than my pee being orangish/red for the next 24 hours (and some major constipation that Dr. Roboz and team ultimately cured), I felt fine. Frankly, I felt better than I had in months (largely the result of steroids and pain medication, but also because the tumor was literally shrinking from the high dose of steroids). Treatments on Saturday and Sunday (both Daunorubicin) were similarly easy to handle. Feeling OK and being surrounded by family and friends before, after and during the treatments had me energized and thinking this was not going to be so bad. Even when friends (who had seen loved ones go through this) explained that the initial “buzz” of it all would wear off and the effects from the treatments would pile up, I knew it was true but I didn’t really care. I was in a good place. [Just like I am right now, even though I feel like garbage after getting my ass kicked the last couple of weeks and know I will need blood and platelets tomorrow, in addition to the last bag of chemo for 2016. Generally speaking, I have been in a good place throughout. But I have definitely complained. At times, I have been a huge pain in the ass (usually to my family (although I try to apologize every time)). And there are moments when I’m not “positive” and have questions that I know cannot be definitely answered.]
Someone from my doctor’s team mentioned on one of the first days that I should not eat anything from outside the hospital. As much I always loved the Jay-Z/Eminem song Renegade, this didn’t seem like the time to be a rebel. So I ate the hospital food (even though some people were bringing me delicious looking food and snacks). I used the special (a) Cholorhexidine Gluconate Soap that the hospital gave me for the shower (which is a red liquid that helps protect against infection, but annoys me for no particular reason) and (b) mouthwash that would protect against mouth sores (which I ultimately got anyway), generally stopped using my straight edge razor as soon as I was told cuts could lead to infections (I say “generally” because I still used/use it for clean-up on my head but I am always very very careful), and did a good amount of walking around the floor (although Jen always was pushing me to do more). But by Sunday, after effectively eating the same thing four days in a row, I decided to “ask” the team on rounds whether I could eat something from outside the hospital. One of the first pictures posted on this site (dated May 3rd with the caption “Starting Off Strong . . .”), was actually taken on late in the afternoon on Sunday, May 1 (the food (Jackson Hole) and picture care of Shai and Nicole). I got the green light to eat anything I wanted (but to stay away from street vendors etc.). After finishing up that meal, my friends helped me pack up my stuff — including some new books, magazines and a few stuffed animals from friends who stopped by — and I was ready to move to the 10th floor. I was pissed that I had to be escorted in a wheel chair, but it was hospital policy. And we were off…..
It is now 12:25 a.m. on Wednesday, December 21, 2016.
Have I mentioned that today is our last day of chemo before the eight-month protocol is in the books?
Sunday, December 18, 2016. It’s the final countdown (got to love the band Europe). Stat line and thank you’s to follow. After four days of chemo — including an early drive to the city yesterday in the snow and rain — I was excited to sleep in this morning. Probably explains why I was up around 2: 00 a.m. (although I was out cold a little after 9 p.m.; my Mom had to help me get from the couch into bed).
Sleep has not come easy at any point. Whether it a function of the steroids or just the excitement of actually beating this thing and being so close to the end, I have recently embraced the lack of sleep. Jen, however, is exhausted (it’s just after 9 p.m. and she is in bed) and I am sure she is sick of continuos episodes of SportsCenter and Diners, Drive-Ins and Dives in the middle of the night. But she is selfless and makes sure that I actually turn the TV on when I can’t sleep no matter the time.
We have one more day of chemo (Wednesday) before the eight-month protocol is in the books. And to think I was just getting the hang of this! [This past Wednesday, at the check-up before the four-day blast, I suggested to one of our PA’s (physician assistants) that even though my blood counts were good on Wednesday, it might be a good idea to do a blood check Friday. Sure enough, after a blood check early Friday am (and feeling lightheaded on Thursday night), I needed two bags of blood. This saved the weekend and, among other things, ensured I could get to both of Jake’s basketball games (although I missed my nephew’s first birthday today because my white blood count is low and it is not a good idea to be near lots of little kids or otherwise over do it (though I did get to spend several hours with Aunt Lynette and Robert, which was awesome)). But just when I was about to give myself a real pat on the back, I forgot to take my pills last night because Jen wasn’t home for the first time (she went to dinner for one of our close friend’s birthdays after I assured her that she should go; I was able to stop by early to see everyone, but Jen staying made the reality of one more treatment (and return to normalcy in a few weeks) real. For the record, it would have been OK with me if Jen wanted to have a Saturday night out with our friends at any point, but that just isn’t Jen.] We have never been people to wish away time. That said, as happy as we were to see the holidays coming, we will be just as happy to turn the page on 2016. Thom Patterson (a senior producer for in-depth digital projects at CNN) seems to agree. Sleepless nights leads to lots of internet surfing and I recently came across Patterson’s year in review type article, which begins as follows (link to full article at the end): “Dear 2016, Pack your bags; we’re done. It was one disappoint after another with you. Just how bad were you? Let us count the ways.” Speaks for itself.
Blood check and check-up tomorrow followed by a day of rest Tuesday. Not sure there is anyone else in the world (other than Jen) as excited about a chemo treatment this Wednesday.
Thursday, December 15, 2016. Probably worth adding this to my “observations” from last night, but the timing of some of the things I saw and/or discussed with people today warrant a quick standalone post.
Throughout these last eight months I have often said (to anyone who will listen) that while this whole thing has sucked, it could always be worse. Along these lines, I love the famous quote from Regina Brett: “If we all threw our problems in a pile and saw everyone else’s, we’d grab ours back.”
What are your problems? We all have problems. And that is not to say that each of our problems are not real or otherwise important to address. For me, the takeaway is making sure you keep your problems in perspective because I truly believe things can always be worse. This certainly does not solve your problem(s), but when I put my problems in context — relative to problems that others are dealing with — my problems seem easier to solve. [This is all new for me and I am not giving advice or attempting to trivilaize anyone’s problems. Simply sharing my view and new perspective.]
We checked the box on another chemo treatment today (just three more for the year), got the “green light” to stop the twice daily Lovenox shots, and started on a medication to reduce the significant swelling in my feet, ankles and legs (from the steroids and daily chemo pills). I was in a good mood heading into chemo even though I couldn’t tie my shoes and had to wobble down the hall. [As an aside, Jen just pointed out (and I am well aware every time I put them on), that I am wearing sweat pants today that I bought on August 28, 2004; the day we got married. Jen told me she was wearing sweat pants on the plane when we left for our honeymoon that next day. My mother always told us we needed to “dress up” when we got on a plane, so this was new to me. I made my Dad walk over with me to the mall near the hotel, and the rest is history. The sweats themselves have seen a better day but they are still the most comfortable pair I own.]
As I waited to be called for chemo, my Mom and I sat in the “East” waiting area (she drove me back and forth today (no comment on the driving Mom)). This is where I always sit. The “main room” is intense and crowded. In fact, I reminded my Mom today that this was the same waiting room we sat in (and where I passed out after my first and only bone marrow test) on April 27, 2016. She remembered.
There were two middle-aged men sitting in the room. I said hello to both and made a comment that one of the guys had a nice set-up (he had an effective work station in the corner). [I am a friendly person. I like people and I enjoy talking to everyone. Sure there are times I am quiet, but I am a big subscriber to the “it is easier to say hello theory,” and it inevitably leads to conversations and hellos down the road. These last eight months have been no different (whether it be the hospital staff or people in the waiting rooms/hallways).]
The guy with the set-up commented that he was trying to “log in” and work, but that it was not a secure network and it was restricting his ability to get anything done. We discussed how silly that was for a few minutes and I said hello to a few of the nurses and doctor assistants that walked by. The other guy commented that I seemed like I was in a good mood. I said I was both in a good mood and very lucky, which led to a discussion about “my story” and status. Both guys commented and smiled. I then made the mistake of asking the guy (who asked about my good mood) how we was doing. When you ask that question in a cancer lounge, you have to be prepared for the answer. His response was “not good.” The guy with the work station suddenly got busy. To make a long story short, while he did not have cancer, he was being treated for a rare genetic disorder and nothing seemed to be working to solve the issue for the past eight months. He has been sick and unable to work, which is a problem because he owns his own business. To add insult to injury, he learned yesterday that his insurance company was changing his plan and it was unclear if he would have coverage in 2017.
As I was saying I was sorry and shaking my head, a man with no legs in a wheel chair came into the room with his wife. I noticed he was wearing a Notre Dame football t-shirt (he sat right in front of me), and I immediately asked him if Brian Kelley was coming back. It led to a five-way discussion (me, the two men that were there from the beginning, the man in the wheel chair and his wife (my Mom sat quietly in the corner) — about college football and college athletics more generally. I was wearing a North Carolina hat (which I wear often simply because it fits) and we ended up talking about ACC basketball and the fact that the Barclay’s Center would host the tournament this year. The wife of the man in the wheel chair got excited because she said her son, who graduated from NYU, got them tickets to that stadium last year and they loved it. The guy who was talking about his business failing and losing his insurance jumped in to mention that his daughter played college soccer in Vermont and he never missed a game. Even the guy buried in his work station jumped in when I mentioned they needed to watch an ESPN 3o for 30 about the original coaches in the Big East Conference as a follow-on comment to the man in the wheel chair telling everyone that he once got to met Lou Carnescca (the legendary St. John’s basketball coach). A moment later they called my name and I said goodbye to everyone. While I was happy to leave the conversation at this point instead of when I had nothing to say other than “sorry,” it was not lost on me that the man in the wheel chair with no legs was the reason the conversation ended on a better note.
My chemo session was in the “Fast Track” room today. It is an open room where six people can get treatments at the same time. Such a personal thing in an open space can be awkward, and I try not to stare. Sometimes people will engage in conversation (I spoke to a young woman yesterday (late 20’s/early 30’s) who had a kidney transplant a few months ago and was still recovering, getting treatments etc. She was unable to work because she has been sick and her blood counts are low.
Today was a particularly tough day. There was an older man getting shots right across from me and he was talkative. But he left before I started. Next to me was a little girl — maybe 12 or 13 — with a woman who I believe was her mother. The mother basically said nothing the entire time. She didn’t look up from a notebook she was scribbling in. The little girl was not doing well. As it turned out, she had a liver transplant recently and this was one of her first follow-up treatments. She was getting some type of infusion for more than 5 hours. And the doctors and nursing staff had to rush in because she was having trouble breathing. The little girl engaged in the dialogue with the doctors and she was very sharp. She knew exactly what medications she was taking, when she had taken them and all the details in between. But this little girl was hurting and I heard her tell the nurse (not her mother) that she was very scared. The mother whispered a couple of things to the girl, but I never really heard her speak or raise her head. My chemo ended, my mother left to get the car, I thanked the nurses and staff who I have come to know so well, and I wobbled out of the room shaking my head yet again. I have been thinking about that young girl all day long……
It was announced this afternoon that Craig Sager passed away at 65. I wrote about Craig Sager on July 18, 2016. He died after a battle with acute myeloid leukemia starting in 2014. A terminal diagnosis didn’t stop Craig from undergoing three different bone marrow transplants and lots of chemo treatments, which enabled him to continue to do what he loved for as long as he could.
Being told it is only a matter of time before you die is a problem that I suspect many of us would not be so quick to “grab back.” But Craig Sager took a different approach (as he explained when he was honored with an ESPY award this summer).
“Whatever I might’ve imagined a terminal diagnosis would do to my spirit, it’s summoned quite the opposite — the greatest appreciation for life itself.
“So I will never give up. And I will never give in. I will continue to keep fighting, sucking the marrow out of life, as life sucks the marrow out of me. I will live my life full of love and full of fun. It’s the only way I know how.”
Continue reading “Problems”
Wednesday, December 14, 2016. Being able to write this post is cathartic in and of itself. It is a post I have thought a lot about. And I definitely was focused on getting to the end and being able to include some of these observations. Some of these points I wrote down in a notebook at the beginning. Like the blog posts in July, August, September (0), October and November (a total of seven (7)), there were lots of notes at the beginning. Those notes, however, soon trailed off and ultimately ceased entirely. Although I did carry around my red OfficeMax notebook marked “Suss” in my back-pack for most hospital stays/trips, the urge, desire, energy and, at times frankly the state of mind, kept me from pulling out the notebook. Or adding a post to this blog.
I guess what I am trying to say, and it is likely an “obvious” observation for anyone following along, is that there were days, weeks and sometimes months in a row that I didn’t feel like writing anything. At first I felt like I was letting myself and others down. [I am not looking for sympathy here, just being candid.] After all, when the blog was created and I debated whether I was actually going to write anything, the purpose was to keep people posted on what was going on. But there was no scope of work or set number of posts to be made. And although I came sprinting out of the gates in May and June (posting something nearly every day), when the initial euphoria of this experience (and medications that keep you up at all hours) starts wearing off — as so many people said it would and I will explain below — and I really started feeling the cumulative effects of the treatments in June/July, the postings (and notes) slowed down.
The guilt of not posting then turned into questions of whether the lack of a post was because I wanted to avoid being negative or simply didn’t have something interesting to say. I also realized, and was reminded by those who unfortunately had to deal with me on a daily basis (I am a pain in the ass without cancer…), that this blog was for me. So if I did not feel like writing, there was no reason to write.
It is not a coincidence that I have felt the urge to post again in last the couple of weeks [my little notebook was filled with various ideas on blog posts at the beginning (some of which I am going to try to knock out here before “the end.”)]. After all, we are literally less than a week away and the emotions of actually being done are overwhelming. I feel like I felt at the beginning (this is effectively observation #1), when we were reminded how lucky we were to have such an unbelievable support network of friends, family, community and colleagues who made sure to lend a hand and their support, literally keeping the focus away from some of the scariest and most surreal days we personally have experienced. That support has been there non-stop and we are so blessed and forever greatful, but as you get into the grind of what has been a long eight months, things in life naturally slow down. We are so lucky that we get another chance to speed everything up (and we are so blessed that the support never let it up, it is just impossible for things to continue at the torrid pace it starts when something like this happens or if you have unfortunately been through something that brings people you care so much about together….)
Had a blood test, check-up and chemo this morning. The blood counts were great even after a four-day week of chemo last week. Chemo today was a breeze (just four more to go!!!). [After 8 months and having trouble getting the IV in over the last 6-8 weeks because it has happened so many damn times and I am running on empty, I finally took Jen’s advice and spoke up about having Judy come insert the IV (so as to avoid potentially getting pricked multiple times). It is no offense to any other nurse, all of whom are talented and really good people who dedicate their lives to patients who come to a place where no one really wants to be. But I hate needles and the stress of the whole process is enough, so why not just speak up? Seems simple. Only took me 7 plus months to actually say something. See below…]. And notwithstanding that I am incredibly swollen all over from the steroids (literally having trouble walking); have a mouth sore for the first time since May; bled through my shirt and all over the sheets last night from the continued beating I have been taking from twice daily lovenox shots (great having my mom here for many reasons, including because she is a perennial all-star in making beds); and obviously don’t feel or look like myself generally, WE ARE SO DONE with what has been a pretty grueling eight months. I am so excited to get back to everything that we missed, yet at the same time hold on tighter to so many things that we have gained.
Long way of saying that I know there were people that were concerned that the lack of posts meant something was wrong or things had gone in a bad direction. I was definitely NOT intending to worry anyone. I simply posted when it felt right and I felt like I had something meaningful to say. Looking back, I might have added some posts when it didn’t necessarily feel right, or might have been a bit negative, because that could have have been something for us (and others) to look at down the road and otherwise reflect upon. But the lack of a post says something too. I get that and always appreciated it. Bottom line: no regrets and (certainly not looking — or going! — back).
So on to the observations, which are included in no particular order. And I am fully reserving the right to use the “Edit” button on this page (which happens often after Jen reads a post in the morning and yells at me about typos). But this type of edit could be a missed observation in a few days, weeks or even years down the road (feels great typing that and even better underlining it). So onto a few observations…….