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…..).]
Josh Sussberg 