Team Suss

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.]

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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.

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[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…..).]

Grand Finale

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.

  • Lots of great sports the last several days (so not a terrible time to be in bed).  As great as the Cavs v. Warriors game was (I watched twice as I did not really start getting sleep until a few nights ago), watching James Connor go out of the Pitt v. Northwestern bowl game at Yankee Stadium with a concussion was crushing.   There was lots of hype — as there should be — for Connor in his last collegiate game.  And there should have been: he won a battle against Hodgkins lymphoma in 2015 and came back to have a great 2016 season.  Connor is off to the NFL.
  • The boys were in Philly from Sunday through Thursday with Lenny and Helene (as was always planned) and they have no clue I am in the hospital.  The boys had a blast, as always, and even got a chance to work (twice) at Lenny’s office and run around from activity to activity with their grandparents.   Obviously the boys appreciate it as do we — always.   [Jen went to Philly on Wednesday morning and brought the boys home yesterday morning.   She called me from the car with the boys, who were completely occupied with their iPads and had no desire to chat.   Jen had already told the boys I would not be home Thursday night, but instead at a holiday party in Delaware.   (They know I go to Delaware all the time, so not crazy).   And they were totally un-phased.   Plus, they will get home from some activities today and I will be there.   As if nothing happened.  I would take credit for this but I obviously cannot — Jen has had everything planned, as if something was going to happen, for months.]
  • I got to spend Sunday, Monday and Tuesday with Jen (she too was frustrated and disappointed, but even from Philadelphia (on Wednesday afternoon) she pulled a rabbit out of a hat and took care of me the entire time).   As tough as those days were, including some in hours of silence (as a result of frustration), I love my wife and know, especially during a week like this, that I have had the easy job.   I obviously couldn’t leave here.   Jen was pulled in a million directions with obligations to all of her children, including the one in the hospital.   I am sure there are other people who will be excited to toast the end of 2016, but in my world, I don’t know anyone more deserving of a glass of champagne than Jen.   [The chances of me making it to midnight tomorrow night — 50/50 (in honor of the assigned oncologist at White Plains Hospital.]
  • My Dad flew in first thing Wednesday morning and today will be the third day we get to hang out together all day.   When do you get a chance, at almost 39 years old, to spend most of three days in a row with one of your parents one-on-one?   [I am fortunate to have both parents (and great-in-laws).  And all four are “all-weather” parents/grandparents — with us in the sun and snow storms.]    While it would have been nice under different circumstances, spending time one-on-one with my Dad for three days is a blessing and I have had a great time even though I generally felt like garbage.   Dad, thanks much for coming in yet again.  And Mom, thanks for letting Dad take this one.  Also glad he will be driving us home…..
  • The support from family and friends has been, as always, uplifting.   I have purposely tried to avoid most friends/colleagues as I know lots of people are away with family this week and a neutropenic fever is not something I wanted people to worry about or distract them from vacation.  But outside of “family,” if people have asked I have told them what is going on.   Bottom line is we are all going to celebrate with everyone soon but, as always, appreiate the outreach from many.
  • I just got poked (hopefully) for the last time (blood test).   So many pokes I can’t remember.   I refused a blood test for the first time (a culture after one of my fevers on Wednesday; Jen refused first, my Uncle Mike was here (and he agreed), so I refused too).   After several attempts at the first two IVs (both of which ended-up in my right hand and ultimately fell out at different times), the IV specialist came yesterday with a new ultrasound vein machine.   I have an IV in my left arm (that I really didn’t need, but for two antibiotic transfusions), and I didn’t even feel him put it in.  Where the hell has this guy been for the last eight months??   He was also a great guy.  We spoke for a while, including about our kids (he has five-year old twins) and working out (he was in good shape and commented that I looked like someone who “used to” work out a lot but got beat get up pretty good.  Thanks much man.  [I will come visit in a few months…]

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.

 

 

 

Full Circle (But Not Quite)

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.

  1. Just as when we drove home on May 13 and I had no clue what was really coming (other than that I felt so good reconnecting with so many people and overwhelmed from the support of so many different people), I really don’t know what January or February (or beyond is going to actually look like).  But it is not quite full circle (not even close) because I know I am going to recover.  Just a question of time.  Huge.
  2. I went to the hospital for a blood check this morning.   I was supposed to get platelets and potentially blood tomorrow.  If I didn’t feel like I needed blood, I could wait until tomorrow and just get platelets.  But if there was a chance I needed blood, they need to test Saturday for type and screen.   [I know my type at this point (I have had 15-20 blood transfusions — not sure any of the blood in my body is my own — but hospital policy is that a test expires after three days.  So you have to retest overtime to make sure].   Knowing what it feels like at this point to need someone else’s blood, I decided to drive in.   When they said they were only doing a type and screen test, I said OK.   Full circle.  But a few minutes later, I called the nurse practitioner back over (after getting poked twice for blood) and said I would like to do a test for all my levels.  I was concerned it was low and I needed to know if I needed blood.  She said that if it was less than 7.0, they would need to admit me (she was worried about the holiday).   Not quite full circle, because in April I might have said let’s wait until tomorrow.  Today I said better safe than sorry (and spoke up on my own (small victories people)).   My hemoglobin level was OK (8.8), but my platelets were 10,000.   They transfuse at anything less than 20,000.   Based on quick research and reviewing the tests over the last eight months (where they give a range and say whether you are under, over or in between), a “normal” platelet count is 150,000-450,000.   On Wednesday I had 17,000 (and received a transfusion).   This means you cannot heal from a bruise or poke.   [My arms look like I was beaten with a stick.]  They told me to come back tomorrow for platelets.   I didn’t push too hard (but asked if today was possible when I first got there and was told it was too busy (which it was; everyone likes to get the chemo and transfusions in before the holidays), so I went and got in my car to head home [Jen was texting me saying I should call/e-mail my Dr./PA to see if I could get the platelets today, but I told her it did not seem possible.  Jen is always right (but doesn’t mean she doesn’t drive me crazy!)].   My PA called within 8 minutes (I was on 77th and 2nd going to pick up some food for everyone).  She said I should turn around, get the transfusion and not come in tomorrow.   So I did.   Took about 45 minutes to get the platelets and I was home by 1:00 pm.  Not planning to leave the house tomorrow (unless I get a fever because my white count is so low and I am taking my temperature religiously).  [JINX!]  Full circle (but not quite) because I should have said let’s just do the platelets today and/or listened to Jen and called my Dr./PA before I left.   Oh well.  Again, a blessing (and great problem to have).
  3. On April 28, 2016 — my second night in the hospital — the Browns had high hopes for the season.  Robert Griffin III was healthy and locked in on a new two-year deal, the Browns made what we thought at the time was smart trade to load up on draft picks (and pass on Carson Wentz), and there was hope for a new coach, front office and revamped team.   We went to opening day in Philly.  The Browns stunk and Robert Griffin III was injured.  He didn’t return until a few weeks ago.  Today, the Browns won their first game (season record: 1-14).   I read so many articles the last few days about how they were the worst team ever.   Not anymore.   Ugly win.  And unfortunately Robert Griffin III was hurt again (concussion).
  4. I chatted with a very nice couple this morning in the infusion center.  The woman was giving her husband crap about not drinking water.  She commented that I had a huge 2 liter bottle with me.  I asked if she thought it was the result of me bringing the water, or my wife packing it.   She laughed.  As did he (he was hurting big time and needed to be helped from a wheel chair to the infusion chair).  He was also in need of platelets.   We had a great conversation and it turns out we have the same doctor.   Whom (together with the entire team) we think the world of.   Small world.   I think they forgot for a few minutes how crappy they felt (and how much they have been through), especially on X-Mas eve.  They have been fighting way longer.   I listened to what they have been dealing with for over two years and, of course, I told a few stories of my own (they wanted to know how this happened, what I do, about my kids etc.).  We had a few hours and I can chat it up.   It is also distracted me from waiting for the blood results; just like at the beginning, I have an intense fear of staying in the hospital unless mandated (except for May when I felt comfortable there and nervous to be home for lots of reasons).   I was pumped when the hemoglobin test came.  Still feel like garbage, but completely expected after 43 days of chemo.
  5. It still takes me a while to figure out what is going on.  I was on chemo pills until Tuesday.   Since it is not a drip, you forget how potent three pills a day for several weeks (in addition to everything else) can be.  I knew this from Jen and Lenny but my conversation with the nice couple reinforced it, because the man has not had any transfusions of chemo, only pills.   And he is banged-up.   It was causing swelling and pain.   And constipation — just like at the beginning (when combined with the chemo).   I started on some meds today (like I did the first few weeks).  Too much information, but another example of almost coming full circle. I wonder if this is leading to my mild case of insomnia?  [I also know it is why it is hard to eat, yet I am starving so I just deal with feeling like I am going to blow up!]  Last night I slept from 1030-2:59.   Plus, I am in the guest room again (like I was in May).   No clock (not sure why), so I roll around and ultimately turn the TV on hoping it is 5 or 6 am.  Two nights ago it was 12:59 am (so frustrating).  Last night, almost 3 — not so terrible.   Hoping it starts getting better.  But my mind is racing with excitement and I have headaches and leg pains at the same time.   I feel terrible keeping Jen up when I watch TV and ultimately give in and look at my phone (the light never let’s you rest).   But I find amazing (and scary things) on the internet.   I have never searched more in my life than in the last eight months.   Here is the inspiring story I read around 4:30 am.   Riley Sorenson — we will be watching The Holiday Bowl Tuesday and hope to see you on Sundays with my boys in 2017 when we watch the “Red Zone” all day long.
  6. Jake and Ryan are in NJ tonight (sleeping at Kim’s and Justin’s house) and then heading to Philadelphia to hang with my in-laws for a few days (my in-laws drove to NJ to pick everyone up because I was planning to have a transfusion this am).   As much as I want to be with the boys (full circle), I really cannot be near them right now and it is harder to be here and not be present.   So I will take advantage, hopefully recover some more, and enjoy the end of the holidays and New Year’s (when we rip off December 2016 and start 2017).  Jen will stay here for a few days with me (after dropping Brandon off in NJ tomorrow am) and go get them and bring them back Thursday.  [Jake and Ryan sleeping out last night turned out to be another blessing.  See point #10 below.]
  7. I am posting at the same rate as I did at the beginning.  Full circle (but not quite).  At the beginning, and I have said it many times before, I was overwhelmed my the outpouring of support (which has lasted throughout).   Today, I am so excited to have gotten through the protocol and be in a position to return to life.
  8. I walked on the treadmill yesterday.   Kind of disappointing:  3.5 and 0.5 incline (for 40 minutes).  Legs very heavy.  Dizzy.   I was upset when this happened in May.   As upset as I wanted to be yesterday, I know it is going to take time.   Just getting on is half the battle.  [But I took today off for lots of reasons.]
  9. A very good source recently questioned my use of agida vs. agita (he left it out there as a rhetorical question although I think he was telling me I was wrong!).   I had thought I had done some research on this early on and was very confident.  I used “agida” in a recent post and I was sent a link explaining why “agita” is the right term (with a dictionary explanation).   Full circle.   I need to go back and fix.   Along with a bunch of typos (Jen is all over me).   No excuses (although I could come up with quite a few!).
  10. I was about to post the points above last night and take a shower before Evan and Carrie came by for dinner.   I had a pretty bad headache (and the chills all afternoon), so I decided to take my temperature yet again.   102.   Then 101.9.   I went upstairs and took a shower.   Did not feel great, but was thinking I was overheated from being in my hot home office.   I laid down on the bed after the shower and took my temperature again.  97.6.   Texted Evan and Carrie and said we were on for dinner.   15 minutes later I decided to take my temperature again.   101.   A few minutes later it was over 100.    The next time it was 99.4.   Better to be safe than sorry, I sent an email to my Dr. and PA explaining the fever and headache, and called the clinic so the Dr. on call could get back to me.  The Dr. on call called back and said I should come to the ER.  My PA called me a few minutes later and said the same thing.   And my Dr. (who is on vacation), emailed back saying that unfortunately an ER trip was necessary and she asked about the headaches.   As soon as Evan and Carrie got to the house (Brandon, who did not sleep at Kim’s, was sleeping upstairs), Evan said he was taking me to the ER (I would have taken an Uber otherwise).   He has been to the ER as many times as me during these eight months (I think three).  This was an extra “special” trip.  The ER is always fascinating (for so many different reasons beyond the scope of this post).   Because I was neutropenic, I was escorted to a quarantined room.  [A few good pictures will follow.]  And because of the headaches and risk of infection, they needed to run lots of tests.   We got to the ER around 8:30 p.m.  I put a mask on for the second time in my cancer-career.  After the resident scared the crap out of me (talking about the possibility of meningitis — I was on the phone with Jen and Lenny immediately), they started antibiotics and we waited for other tests.   I was freaking out (so grateful Evan was there).   An EKG, CAT-scan (to check for bleeding in the brain) and lung x-ray followed.   There was a nose swab (to test for the flu and other viruses).   And several blood cultures.   While we are waiting for the blood cultures, everything else came back OK.   My hemoglobin, however, dropped from 8.8 to 7.4 during the day (and 6.9 this am).   Probably explaining the headaches, although we have had them for a few days.   We are getting a blood transfusion now (going very slow) with another to follow.   Also have had IV antibiotics (and it was not easy to get two IV’s in.  The IV specialist suggested I get a PICC line today.  I laughed.).  Full Circle.   Jen is next to me (after dropping off Brandon in NJ), and may even stay here tonight (just like on April 27).  But, just like everything else, not quite full circle.   I am not planning to stay in the hospital again.  But of course will be careful.   Lower back and hip pain started today, which we welcome with open arms; this means the white blood cell shot/booster from Wednesday is starting to kick in and my body is making white blood cells.   Evan — can’t thank you enough brother for being here all night and into the morning.  And of course you too Carrie, for being there with Jen (who obviously wanted to be here but needed to be with Brandon).  All will be fine — this is part of the process.   And that process (at least the hard part) is  coming to an end soon.

 

Chapter 2.5 — The 10th Floor

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.

  • The 14th floor had a special kitchen and allegedly great food.   The 10th floor, however, was way better.   Beginning on morning of May 2 (omelette, hash brown and turkey sausage links), I enjoyed 2-3 meals each day during my stay.   And this was notwithstanding a constant flow of food from guests (or Jen and my parents/in-laws).   My favorite:  the turkey burger.   I love turkey burgers but this one, kind of narly looking, was delicious.  If I didn’t see it on the menu, I would ask the person coming by if they didn’t mind bringing one on the side (at both lunch and dinner).   [A few weeks later, as a result of the cumulative chemotherapy, I lost my taste for turkey burgers — and a lot of other foods.  But this happened after May 13, so I got to enjoy a turkey burger close to every day.  Here I am enjoying one with Scott (who liked it too) in my Lehigh t-shirt.]

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  • The nurses and nurses’ aides on the 10th floor were great people and they took good care of me.  As was the entire staff on the floor, including the people who sanitized the rooms on a daily basis and were very friendly.   [The same can be said for everyone on the 3rd floor infusion center, where I spent most of the past eight months.  No patient wants to be on the 10th floor (or the 3rd floor) and there is no patient that actually chooses to be on these floors.   But my philosophy was always to make the most of it and not change who I was.  So I was positive and said hello to everyone.]  My first two aides were men and they both looked like body builders.  Which pissed me off because I had not been to the gym in two weeks.  But they were both nice guys and I saw them off and on over the course of the next 12 days.   There was another aide who used to hang around a lot (we will call him “K”).   A young guy who was hysterical and had lots of stories.   He met lots of people who came to visit and if he had the time, he would come by to say hello.    In addition to being a nurse’s aide, he was a “back-up” dancer hoping to get into music videos.   I pushed him to have a dance-off against my buddy Evan.   Ian taped it (and posted it on You Tube); me, my Dad and Naomi watched.  We moved the furniture to create a dance floor.   Who said the “induction” phase can’t be fun? 
  • My brother brought me Dunkin Donuts coffee every single morning on his way to work.  [My kid brother is one of a kind and throughout these eight months, he was always willing to do whatever he could to help out, including rides home from the hospital to Scarsdale (and then back to the City) so Jen could get home for the boys if treatments or infusions went long.   He drove me home after my last treatment on Wednesday.]  Drew also made tough phone calls to friends, including some I had not spoken to in years, to make sure they knew what was going on.   I have not been drinking coffee over the last several months (no taste for it), but in May I enjoyed every cup he brought.   And once in a while he would grab one of those breakfast sandwiches (an extra special treat).  [Drew, Alexis, Mia and Violet — don’t let us down.  We will see you in Scarsdale in 2019.]img_5329
    [This was the summer of 1997; I was 19 heading into my sophomore year at Syracuse.  Drew was 16 and heading into his junior year of high school.  [Drew is taller than me now (and in better shape — but as I told him the other day, that is only temporary).]
  • I was not sleeping well (or much) at night because of the steroids. I would respond to emails and texts for hours and watch SportsCenter before trying to fall asleep. Sometimes I would sleep for a few hours, other than times I would just lie there and ultimately grab my phone. But I was never tired (steroids). I would shower and get dressed (in sweats and a t-shirt) first thing in the morning.  Jen would usually be there in the morning after dropping the kids off at school (or my Mom and Dad after they stayed in NY for what seemed like a month).  Drew would be there in the am and Jeff F. came for several breakfast meetings.   Most visitors would start coming late morning and throughout the day/night.  It was awesome.  In addition to the emails and texts from so many people, friends, family, partners, associates and colleagues from Scarsdale, Syracuse, Cardozo, Cleveland, Florida, Philly, Boston, New Jersey, Kirkland & Ellis LLP, the restructuring community (including people from LA, Houston, Chicago etc.), camp, and Jen’s friends (who are my friends) from Cornell, all came by to say hello (usually with food or books and magazines).  Even Rabbi Dan (my Rabbi from growing up in Florida), who married us in Philadelphia in 2004, happened to be in New York the first weekend of May, came by the hospital and said a prayer with me and my parents.  As I have said many times before, I am forever humbled and grateful for the support.  And we cannot say it enough or ever be able to really explain in words what it meant to us (Jen was home alone and her friends were there nightly making sure there was food (for months) and people around to support her (as she had it the hardest from day 1).  We are so fortunate to have had a support system throughout these eight months.  It is only appropriate for us to pay it forward (and we intend to do so in many different ways).  [Makes me think about the guy I met on December 15 who had his own business (that is failing) and lost his insurance; then I think about my firm and partners (who are friends) who stepped in, handled all of my matters and told me and my family to focus 100% on getting healthy.  That is what we did and we are blessed to have been in a position to have done so.]
  • There were definitely some tough moments/days on the 10th floor.   But the good outweighed the bad.  [Some friends have reached out and said I did not complain the entire time.   That is not true.   I definitely complained.   I am going to complain below.   And I have complained about certain things throughout these eight months (to Jen on a daily basis).   But I have kept my complaints and issues in perspective, always realizing that someone else is dealing with something worse.  (For example, and for those who know me well, you would not be surprised that when I am neutropenic I take my temperature often.  If you have a fever of 101.4 for an hour, you need to go to the hospital.  I just took my temperature because I have a headache and freaked out because it was 99.7.   I debated not bothering Jen (who is at lunch), but I texted her anyway.   Watching for a response (I like to respond quickly and impose that on others), I went upstairs and took my temperature again about 15 minutes later; it was 98.8.   My home office is the warmest room in the house (we went through this exercise last night when we took my temp and it was 100 before moving rooms!) and it just dawned on me that the terrible headache is from wearing new glasses the last two days during my house arrest.  I just put in my contacts (and might take some Tylenol since I know there is no fever), but of course Jen is on her way home.  Sorry.  I may have new perspective, but I am definitely not smarter.)    And with that, let the moaning begin…..]
    • On Monday, May 2, I had about a 1.5 hour procedure to insert a PICC line.  This would have alleviated the need to get an IV every time I had treatment (and would remained in place for eight months).   Once the PICC line is in, you can not lift anything over eight pounds and need to make sure it is cleaned properly and covered for showers.   Pain in the rear-end.   I dislike (very much) procedures and I can’t stand the IV getting inserted.  Especially when they miss.  [This just reminded me of the time on the 14th floor the week before (prior to knowing  there were IV specialists (who I subsequently asked for every time — and now I ask for my beloved Judy, who has stepped in over the last six weeks or so because I have no veins left after having IV’s inserted for eight months)), that a very nice nurse from Boston (a big Pats fan who loved the movie The Town, one of my favorites) put in the IV.  I asked her if it was normal to lose feeling in my middle finger.  She literally hit a nerve.   That IV came out almost as fast as it went in; the feeling in my middle finger did not come back for a day or two.]  I knew Jen had been outside waiting with a few of our friends from Scarsdale (the procedure started just before noon).   After they finished, I was in a little pain but got up to let everyone come in as they were gathering their tools from the procedure.   In trots my friend and colleague Steve R. and his good friend Michael Strahan (see one of the first pictures on this site).   Jen and some of the Scarsdale girls were right behind.   Apparently Michael got there with Steve just as the procedure was starting and waited the entire time.   It was great to meet him and I told him I had a lot of respect for his post-football career (and very much appreciate Steve making this happen).   Lots of nurses (and doctors) were equally happy that Michael Strahan hung out on the 10th floor for a while.   And it certainly distracted me from the pain I was feeling from the procedure and PICC line generally.   To make a long story short, the PICC line was removed less than 24 hours later.  I had developed a small clot on the line, which explained why I was in pain (the medication did not even help) and my doctor decided I could move forward without the line.   I remember thinking that this was a great development (including because I could lift weights (I can count on my hand how many times that has happened).   Would not go back and change anything; just saying what happened.
    • I started getting mouth sores around Tuesday, May 3rd, and they got worse before they got better.   There was a day I could only eat Jolly Ranchers as the sores made their way into my throat.   But it got better quickly with all sorts of medication.  And while I definitely talked a little funny with anyone who was there, I remember saying if this was the worst of it, no problem.
    • On Thursday, May 5th, I had another chemo session (vincristine) and my first spinal tap.   I did not know what was involved in the spinal tap, other than they inject chemo (methotrexate) into the spine so that it gets to the brain.   I was told the brain is a place where micro cancer cells of this type hide and the spinal taps are an important part of the treatment to help ensure this never comes back.   [We were lucky to learn early on that there was no exposure to my bone marrow (following the test on April 27) nor my brain.   While the treatment regime was the same no matter what, this was a pretty important development.]  The agida for the spinal tap started on Tuesday.   To this day, even after 12 of these (with 12 more to come in the next three years), I still start getting antsy about two days before.   But the first one was a big one.   And it ended up going OK.   I wanted Jen to be there for this and of course she was.   You sit in an awkward, uncomfortable position and the procedure feels like it takes 2 hours (it can last anywhere from 10-30 minutes).   After it was over, you must lie down for at least an hour and drink caffeine to avoid a nasty headache.   We did exactly what we were told (laid flat for more than an hour, drank coffee etc.).   I took it easy that night.   By Friday, I was fine.  Up and about, walking the halls.   Hanging out with friends.  All good.  On Saturday morning (May 7), Brad came by for an early breakfast.   He brought me pancakes.  I knew he was coming and every day prior I was up really early (after not sleeping), and ready for anyone that came.  But Saturday morning I had a terrible headache.  I was very worried that I was getting sick.   Plus the team had suggested that there was a possibility of me leaving the hospital on Sunday (which was Mother’s Day, and I was pumped about that).  [Also loved that it would have been less than two weeks.]  When I stood up and I walked over to Brad, I had an awful sensation come over me and the next thing I knew I was in the bathroom throwing-up.   I had a spinal tap headache.  At least that is what they thought when I called them.   I remember being cold (and having a blanket wrapped around me).   I fought through and still got to hang with Brad (and got some medication to help alleviate the headache).   But that turned out to be a not such a great day . . .
    • My blood test later in the day on Saturday (they check your counts every day in the hospital), revealed I was neutropenic.   [Same as I am right now.]  Fancy way of saying you have very few white blood cells (if any) to fight off infection.   There are foods you cannot eat and you effectively need to stay away from people.   They suggest you wear a mask.  [Something I did for the first time on Wednesday, and I have been neutropenic many times before.]   As a result of being neutropenic, they took the few flowers out of my room and left them in the hall (for reasons I never really cared to understand).   And when I showed a slight fever later in the day (a little over 99), they told me that going home on Sunday was not in the cards.   I had to get a few shots (on May 8th and May 10th) to help boost my white blood count.   I was incredibly bummed about Mother’s Day.   Jen was home with the kids and all four grandparents were there.   I had hung-out with Lenny and Helene on Friday night (after they drove from Philly as soon as Lenny was done working) and saw my parents on Saturday (and nearly every other day).   They were all on rotation.   But getting home for Mother’s Day was something I really wanted to do.   Plus, and definitely more important, Jake’s birthday was the next day — May 9th.   The reality set in that I was not going to be there for his birthday or his party after school.   That sucked.  And being the jack-ass that I am, I mentioned to him that it was possible (on face time a few days earlier) that I would make his birthday.  Jen knew that was stupid when I said it several days before.   And she was of course right.  While I was able to put this in perspective after the initial disappointment, Jake had no real idea what was going on (Daddy was in the hospital because he had an infection and he thought I was coming home for his birthday after I said so just days before).   Plus I was not at home.   So Jen, like with everything else, had to deal my mess.  No surprise, she handled it like a champ.   Jen blamed it on my Dr., and then asked my Dr. to get on the phone with Jake and tell him that it was her fault (which she did, explaining that she decided I needed to stay in the hospital for a few more days).   According to Jen, who was in her car on blue tooth, Jake kept his composure while my Dr. was on the phone, but towards the end even the Dr. felt the tension and Jake was going to blow-up.  When my Dr. hung up, Jen told Jake he had permission to say whatever he wanted about the doctor (including a swear word if he was so inclined).   What he said is hysterical, but not something I want to put out there.   [Plus it is hearsay coming from me, so if you want to know, give me a call and I will put Jen on.]  Jake was ultimately fine, and Jen and others who were at the party (including my parents), told me he didn’t think once about me not being there.  [Thanks much Jake.   If you read this at some point, know that I am not planning to miss any more birthdays (or Mother’s Days).]
    • I had another round of chemo on May 12.   The day before I left.   This time it was vincristine plus a new one — pegasparagase.   [This turned out to be a tough chemo for me.  And sure enough, about 5-7 days after getting it, I always felt like crap or developed some issue (blood clots, cholesterol etc.]
  • Jen drove me home on Friday May 13.   Same day as my first post.   I was nervous, excited and uncertain (probably) about what was to come.   I remember talking about doing in 2 weeks what they said would take 3-4 weeks, and Jen suggesting (and me agreeing) there was no way life was going to be “on pause” for six months.  Sitting here now and writing about this after eight months is pretty wild.   The side effects were minimal after the first two plus weeks and, while I was told it was going to get worse, I had no idea what was really in store or just how long this would take.   We often say if we knew then what we know now, it would have been different.   No thanks.   I wouldn’t change a thing.   And don’t want to ever do it again.  Plus, with monthly trips for chemo and quarterly spinal taps through 2019, it is going to be impossible to forget.   That is OK too.   It is necessary.   If they told us the maintenance was extended another year (or two), that would be OK as I plan to be cancer free forever (although I might ask if we could stop the spinal taps; already thinking about the next one…).  I am definitely going to be “me” coming out of all this, as I know no other way to live.  [I have some business/ski trips planned starting at the end of January, though I appreciate it is a marathon not a sprint and need to play everything by ear.] But I am pretty certain that this has changed me forever.   Time will tell.   Right now at least, notwithstanding that I feel like crap after getting my ass kicked for eight months and have developed a case of insomnia (mixed with excitement), my head is firmly affixed and my eyes are wide open.  Just like when Jen drove me home on May 13.   My beard, however, is definitely longer.
     

Box Score

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.

 

 

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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.]

Play List

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.”

Chapter 2 — The 14th Floor

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…..

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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?