Yule tidings to all! We’re grateful to be home after Steve received his high dose Ara-C chemo treatment at Newton-Wellesley (free parking on Christmas Day, by the way). From the attached photo please let me know if I should call him Yul (Brynner) or buy him lollipops (a la Telly Savalas). Views/votes?
Steve is fairly exhausted but that’s more because of the “screamers” on the chemo ward the last two nights than any specific side effects. We had none other than Dr Wisch personally attending to this first of three cycles of the Ara-C; he seemed relieved to hear that Steve was mostly bored for the 48 hours. His direct quote was, "I like boring. A LOT." It is fairly disconcerting to see all the hazardous chemical warnings and special trash bins for the IV materials with this cocktail. Every 9 hours, Steve needed to have neurological testing done because Ara-C can affect the cerebellum and thus fine and gross motor function (ugh). In classic Steve fashion, he renamed one of the neuro exercises “the cancan” and even hummed along to Dr Wisch’s delight this morning! Yup, some guys will do anything to get released from the hospital…
He also promised Dr Wisch to touch his own nose next time. (Just kidding, but Dr Wisch did say that he has had patients touch his nose before!)
Tomorrow Steve gets another shot of Neulasta to stimulate his white cell production, and Monday we’re back at the doctor’s office again to document his plunging white cell counts. But most of all, we’re grateful to be home with a lot of movies still to watch in Alex’s great duffle bag of treasures, some more yummy shepherd’s pie, and the prospect of seeing most of our brothers this weekend.
Remember to wish Steve a Happy Feast Day tomorrow – he is convinced that December 26th is better known for the St. Stephen piece than for the sales-Boxing Day stuff. Let’s not burst his bubble, OK?
Well, I'm nearly through the first day here at Newton-Wellesley Hospital, and based on my rate of shedding, I predict that I will be bald as a pool cue by St. Stephen's Day on Friday.Lest you feel some pity for me in that revelation, let me direct your attention to the above photo for a prime example of the bed head phenomenon that was me prior to getting my buzz cut a couple of weeks back. I'm talking Big Apple Circus bed head here, not the stray cowlick here or there but a high-altitude, high-wire act that was not appropriate for viewing by the young or those suffering from cardiovascular challenges. Goodbye bed head; you won't be missed.
I took the first dose of the ARA-C from 10:30-1:30, and I'll get the second dose at 10:30 tonight. Doses 3 and 4 happen on the same timetable tomorrow, and then with any luck, I'm out of here late morning on St. Stephen's Eve (also known to some as Christmas).The first dose appears to have gone down well, thanks to a host of anti-nausea drugs now coursing through my system like the snow-clogged Charles River just around the corner from here (OK, I'll save the poetry for the other blog). The good news is that it's so far, so good. I've eaten two square meals (very square: turkey, mashed potatoes and gravy) plus some potato chips and cookies that Kath was good enough to smuggle in from the commisary downstairs (I told her that she "gives good nurse."). I don't yet have any of the neurological side effects that cause some ARA-C patients to lose sensation in their extremities and have difficulty signing their names, which can make it difficult for them to pay their bills so they won't get released until they can (just kidding)...
You've had a chance to read Kath's earlier post, which was lovely. She should have no performance anxiety on this blog as far as I'm concerned. As she wrote, members of Class V from the Eureka-Boston Fellowship that I ran back in the day came over for dinner last Wednesday. I love all of the nonprofit leaders who were part of that amazing network that we built together from 1999 to 2003 (and that lives on in the Massachusetts Nonprofit Network). This particular class has a special place in my heart because they have continued to meet regularly and informally in the five years since their program ended, enduring marital crises, personal tragedies, new fixer upper homes, professional duress, and much more and continuing to hold each other close whenever times got tough for one of us. So no surprise that Mark, Sandy, Phil, Sarah, and Renee should show up with crazy amounts of Redbones barbeque and the kind of friendship that can carry you through the darkest times.
As I told them that night, these are by no means the darkest times for me. In the past two months, I have been reminded in myriad ways of how many people I have had the chance to touch and be touched by going through over two decades of trying to see if we couldn't maybe someday give kids born in poverty the same lucky breaks and the same second chances that guys like me carry around like a birthright. And well we should carry them around as such; but only if every other child, regardless of circumstance carries the same rights.
Which leads me to why I know the times are not dark. One of the Eureka Fellows at dinner last Wednesday works at Boston Healthcare for the Homeless' McGuinness House, which provides respite care to patients with long-term illnesses. When I talked about my work with MY TURN in Brockton, she told me about a patient from Brockton who has just been transferred to their facility so that he can begin chemo. He can't do chemo in a shelter because of the potential exposure to pathogens that could kill him with a compromised immune system.
So while I sit here in my private room at Newton-Wellesley hospital, paid for with generous health insurance benefits and arranged through that Lebanese-Egyptian-Rhode Island mafia I celebrated in an earlier post, there's a man just like me, but for the grace of God, who will walk a much harder road. Not a hopeless road, thanks to Healthcare for the Homeless, but a far more daunting road.
Everytime I get pricked or prodded here over the next few days or lament where I'm spending part of Christmas week, I turn my mind to this brave soul a few miles away from me. A brother in arms. I'm as lucky as they get and I will never, ever forget it.
OK, OK, OK already… so you all know what I’m feeling: just how can I keep up with Steve’s amazing writing and poetry? Isn’t it intimidating to share a blog with him? The answers are: I can’t and YES! So I’m just going to be me. Hope that’s OK with you, because it’s really OK with me.
We’re here at Dr Wisch’s office. Steve is asleep – thanks to a few doses of Benadryl; the infusion of the Rituxan seems to be going well. Tomorrow morning we need to be at the hospital about 6:30 a.m., for the Ara-C "round". This is the 2nd chemo series, and alternates with the CHOP. We’ve been told to expect that the nausea will be more noticeable with this round, and Steve continues to have a positive attitude along the lines of, "Just bring it on and let’s plow through this…"
Speaking of plowing – we have over a foot of snow at the house. The two back-to-back snowstorms this weekend were undoubtedly organized to wreak maximum havoc on my nervous system. I’ll spare you the details but suffice it to say that thank goodness all four of our boys are safely in their tropical destinations for Christmas, my mother is a saint for flying up to get Theo and Lucas and then flying back to Florida (timing BOTH legs of the trip to coincide with a snow storm), and I survived a treacherous 2+ hrs ride home from the Providence Airport last night. (Let me just say my knuckles are still white today) Steve loves all things mechanical and refused to let me use the snowblower; I think the next storm is on me, however!
We did celebrate Christmas on Friday night with the boys, and amazingly, we actually succeeded in choosing gifts this year with which everyone was HAPPY. It just goes to show that being really focused and not having a lot of time to make ourselves crazy about Christmas gifts is a good thing… as is online shopping.
We’re grateful, too, for some fun and lovely friend visits this last week – the timing was great with Steve’s white blood cells rebounding, and schedules working out. Thanks to Andrew, Renee, Sarah, Sandy, Mark and Phil – and of course Aunt Debbie and Uncle Joe - for making the trek to Dover!
As predicted, Steve is losing his hair, in fairly large clumps. He’s really doing OK with it, although I teased him that he had the misfortune of wearing a black sweater yesterday so that we could calculate the number of hairs lost. Let’s just say it’s a lot. Oh, and he’d want you to know that the BACK HAIR IS COMING OUT. He’s going to thank Dr. Wisch for that one –
Hugs to all -
p.s. I just looked online and have to say that I’m sorry to bump Coach Troy out of the top slot on the blog…
We're enjoying a mellow weekend over here and I'm feeling just fine. Put in a regular week of work and did all of the things that you wouldn't expect a guy with cancer to be doing. My favorite line from Monty Python And The Holy Grail often comes to mind these days: "I'm not quite dead, yet."
Living a normal life includes resuming my normal bike training routine during the winter, which is doing a variety of interval drills with my bike up on a folding trainer under the direction of Coach Troy Jacobson, who has put out a bunch of DVDs under the name Spinervals. These DVDs have a couple of benefits: (1) they keep you from being bored out of your skull while sitting on a stationary bike in your basement at 5:30 a.m. and (2) they push you to challenge your own limits and build more endurance and power reserves when you get back on the road.
I've started posting my training log on the right-hand side of this blog, partially to brag, but mostly to reassure you that I really am doing ok. There will be ups and downs, usually for the days around a chemo treatment, but for the most part, I should be able to live and work and play as I normally would, with the exception that I am absolutely positively not going to shake your hand or share a swig out of your beer bottle given my dangerously low white blood cell counts.
I eased back into my training regime earlier this week with relatively short, lower intensity (for me anyway) rides of 30 and 42 minutes, respectively. Today, I planned to do about an hour and a quarter, covering about 30 miles in that time, following Coach Troy's DVD called Spinervals 22.0 - Time Trialapalooza.
So, I was in my spandex (sorry, no pictures--for which former colleagues at Boston Beyond breathe a sigh of relief) about to head down to the basement when Kath brought in the mail before heading out to run her errands. At the top of the pile was a padded envelope from Troy Jacobson MultiSport, postmarked White Hall, MD. I tore it open to find a brand new Spinervals DVD (Spinervals 28.0 Aero Base Builder IV) and a hand written note from none other than Coach Troy himself:
Dear Steve:
Happy Holidays! Kathleen sent me a note about you. I wanted to first say that I wish you all the best in regard to your treatment--and recovery. Being fit will be a huge benefit. I also wanted to thank you for using Spinervals DVDs as part of your training regimen. I hope you 'enjoy' them. Finally, be strong, ride smart, and keep the rubber to the road.
Best wishes,
Troy Jacobson
I have to say that this simple note, from a guy who I have occasionally cursed as a sadist with corny jokes (pretty much an extension of my own personality, I guess) moved me to tears. So many of you have written me emails, called me, sent me cards, and done so many, many loving things to let me know that I am in no way alone in this struggle, that I have as big a cheering section as Lance Armstrong ascending the Alpe D'Huez. And now, thanks to my amazingly loving and resourceful wife, I have this half stranger/half household fixture cheering me on.
So, I went downstairs and posted that note right next to my bike on the wall, climbed on and proceeded to kick the crap out of Time Trialapalooza putting in as good a time as I did before chemo.
Life goes on, and I plan to go on living. As I've written before, please don't grieve for me, because I am not grief-stricken. I am counting my lucky stars for each and everyone of you. And for Coach Troy. And especially for Kathleen.
Well, we're about a week into this. There are all sorts of tired sports cliches that I could summon to ground us, to give us some navigation tools in this undiscovered country. I prefer to think about the centuries for which I've trained and ridden off and on for the past 20 years of serious cycling. A century is a 100-mile bike race, and it's more or less on par with running a marathon. I've completed a bunch of them, usually breaking five hours. To ride a century requires at least 10 weeks of focused training, covering between 150-250 miles a week.
How do you get through that kind of training and keep going? How do you punish your body and find something left in the tank for that last hill?
One mile at a time. The key is to discipline your mind to stay in the mile you're riding and to know your body well enough to know how much to keep in the tank for the miles to come. If you ride a bad mile, you make up for it in the next one.
OK, I think I've made my point. This is a century, and we're at Mile 2. One week into chemo, and I'm actually feeling more than OK. As Kath wrote in her earlier post, I had a couple of rough days last week where I felt a bit run down and nauseous. But honestly, I felt the same way both times Bush won, and I got over it. We kept a bucket in the bedroom last week, and I never had to use it. A no bucket night is a good night. By Thursday of last week, I was able to work a full day. On Friday, I drove down to Rhode Island for a board meeting for MY TURN and felt fine. Amazingly, I'd been craving baked ziti all week, and wouldn't you know that my wonderful assistant, Jennifer Travers, had ordered it for the luncheon that day! Talk about a mind reader.
The board was incredibly supportive and helpful, which was an enormous comfort. After the "business" part of the meeting, we came downstairs to have lunch with a dozen key stakeholders of our Rhode Island programs. Wendy Mackie, our Rhode Island Executive Director, wowed everyone with her energy and vision for the program. But what I took with me on the car ride home was the words of the principal of Mt. Hope High School in Bristol: "MY TURN has saved at least 15 kids from dropping out so far this school year." If that isn't worth dragging my sorry ass out of bed and riding the next mile, I don't know what is.
The boys and I had a good, low-key weekend together doing normal things like going to Guitar Center to jam on instruments we couldn't afford, working on ridiculous science project homework assignments, and most entertaining, going to the New England dog show, so that Louis could see the running of the West Highland Terriers. This was a down-market version of the movie "Best In Show," with more pathos than comedy. That said, getting a chance to see a dozen corgies with their owners trotting out to the parking lot and back might have been the oddest sight of a very odd human/canine assemblage.
Don't let cancer own you was the advice that's stuck in my head these last few weeks--not unlike the bike racing maxim that you have to own the course, not let it own you. Sticking to the normal, even the abnormally normal things like dog shows, is my way of owning this course. A couple of miles into this very long ride, I'm keeping my cadence up and making sure there's plenty in the legs for the miles ahead.
OK, Stephen Colbert I am not, but “word of the day” did enter into my mind this morning… and I thought we could use “RESOLVE” for this first day. It has quadruple meaning in my life this morning…
1) How proud I am of Steve and his resolve… this week wasn’t fun, although he will continue to be Mr. Funny on this blog. His energy sagged this week most days around 4-5pm, he wasn’t hungry (my homemade turkey sausage and sage soup – made with love – went untouched), and even his coffee doesn’t taste the same anymore. Steve not finishing a cup of coffee - what will Starbucks do? Susan in SF (thanks for the tip!) said that lemon sorbet is the best thing for the metallic taste in the mouth after chemo. Steve said, “Well I’ve never liked lemon sorbet before but given all the stuff I like tastes awful, we’ll give it a whirl.” He is still not sleeping well – the port in his chest sits on bone, and given he has no fat on his body, hurts like a son of a gun. And the flu-like symptoms have been nasty… the shot he received yesterday helps to stimulate white blood cell growth, and it “pulls” from your bones. In Steve’s case, the site of his marrow specimen in his pelvis is the epicenter of discomfort. 2) Resolve is also the name of the rug disinfectant I used after Lucy the Westie vomited on Louis and Roddy’s floor and pee-ed in Lucas’ room. Steve said she doesn’t understand me when I call her out for that inappropriate behavior. She was looking mighty contrite to me, so maybe she’s smarter than those “Far Side” dogs by Gary Larson. By the way, one of my favorite all time Far Side cartoons was entitled ‘What dogs hear’: “Blah, blah, bllah, Lucy, blah, blah blah, blah Lucy” (my other really favorite one had the dog driving the car, and the man in the passenger seat with his tongue wagging out of the window) 3) Resolve relates to my drive to have Lucas (13) keep his hands clean. I am dogged, persistent and down-right irritating about it. “PLEASE WASH YOUR HANDS” is my new mantra. As if my teenager didn’t dislike me enough before all of this… 4) I am now resolved to hop on the bike in the basement and use one of Steve’s intense biking DVDs. This is because I am resolved to not put on 25 pounds during the next few months. Let’s just say that my resolve as it relates to Lindt 85% cacao this week has been poor…
Some lighter moments in our life this week…
A) Steve: "I think it's an American thing... I mean, I'm really going to support those cash-starved pharmaceutical companies." Kath: "Gee, I'm so glad this stuff makes me sleep, I guess I'm helping those poor pharma folks in my own little way, too." Steve: "Well, I'll meet you there and raise you four (more drugs)..."
B) My brother Gene called from Pennsylvania and simply asked, “Do you have the bumper sticker?” to which I replied, “What bumper sticker?” and he said, “The GOT CHEMO bumper sticker?”
C) Steve showing me his bruises on both arms from blood tests (each day) and saying, “Maybe when this is all done I can do that cage-boxing thing… if I can survive this, I can survive that!”
We’re hoping for a quiet non-eventful weekend. Steve got the OK from Dr Wisch to take Louis and Roddy to the car show (as long as he doesn’t kiss anyone there). Lucas has a swim meet tomorrow, and he/I will head down to the Cape to take Theo out for brunch on Sunday. We’re also hoping to set up the Christmas tree with the boys; Dr Wisch’s advice to Steve was, “It’s fine, just don’t lick the tree, OK?”
Love, Kath
p.s. I hope the Republican followers (my brothers!) don't take offense at the use of the word resolve - I do love you guys! ;)
Hello Gentle Readers: As expected, Day 2 is when the chemo effects started to become real. It's amazing how much macho bravado gets knocked down by the reality of running the medical equivalent of battery acid through your veins. Yesterday was the CHOP part of the R-CHOP regime. You can read Kathleen's erudite post below to learn more about that. All I wanted to know was where I would be getting the lamb chop or the pork chop. They let me go with the lamb. Speaking of food, one of the drugs they gave me was called something like "aloxy" and I did give the nurse pause for a moment by asking if I could get "a bageley" with my aloxy.
Things change; things stay the same.
Anyway, I felt fine while I was at chemo, which was a good three hours. Thanks to the wonders of Wi-Fi, I was able to get a handle on my inbox, write a poem (which involved me double-checking the difference between turgid and turbid, thanks to Google's handy-dandy online dictionary), crack more bad jokes with the nurses and patients, write more emails—in other words, I was mostly bored out of my skull.
Don't get me wrong. Boring is good. I've been way too interesting to my doctors and my friends and family the past month, even for an unreconstructed narcissist. The day this whole ride started, in early October, I had been at my internist's office for a routine blood pressure check. He brought in a Harvard med school student who follows him on Thursday rounds and made some offhand joke about most of the patients being boring, especially fit, healthy 45 year-old males with hereditary hypertension. He then asked if there were any other medical issues I wanted to ask him about, and I brought up these swollen glands in my neck. Within three minutes, the tenor of the meeting had changed and my doctor said to his student, "Well, you got to see something interesting after all."
So everything going according to normal—blood chemistry, tolerance for the meds, water retention, etc.—is exactly what we want. Of course part of normal is getting nausea later in the day. Don't worry, I won't get too graphic here and give you specific colors, consistencies, etc. You need to have some room for your imaginations to run wild. When I got home from chemo, I was feeling a little light-headed but otherwise fine. I took Lucy on a 45-minute walk since it was sunny and the two of us had a nice time. I then sat down and continued working on a deck for the MY TURN board meeting on Friday. By 5:00, I was out of gas and crashed on the living room chair with NPR for white noise. When I woke up, my stomach let me know that we weren't in Kansas anymore.
The good news is that I did not throw up, but I did feel my stomach at work all night long, so not the greatest night of sleep ever. I'm keeping myself hydrated and just made myself a hard-boilded egg and toast for breakfast, to help wash down the five prednizone tablets, the emend anti-nausea pill, the allopurinol to keep my kidneys functioning while all of this stuff runs through me, and the blood pressure pill that started this whole thing. Well actually, that last one may just end up having saved my life, my internist's snarky comments notwithstanding.
Today, I head in for more blood work and a shot of something that is supposed to stimulate generation of white blood cells. I may actually go into the office for a little bit, but don't worry. If my body says no, I will listen.
Hugs to all of you for your amazing support and friendship,
Steve and I are sitting at Dr. Wisch’s office with an adorable lady named Frida and her daughter; it looks like Frida isn’t winning in the cribbage game, but her spirits are high. It’s a full house in the chemo chairs today – I’ll probably get bumped out to the waiting room soon.
Today, Steve receives the “CHOP” part of the R-CHOP cycle which is part A of the regimen (part B will be the inpatient Ara-C in 22 days). “CHOP” is not a Ronco product (nor, I reckon, does it only cost $9.99) but it is:
This is the real-deal chemo, and will make him nauseous and lose his hair… he did want to add that not having “bad hair mornings” upon wakeup should have been on the Top 10 list he created yesterday. And Thursday is the day Steve will get his super short buzzcut; apparently his hair will fall out within a couple of weeks.
By popular demand, here’s some of the science behind what we’re learning right now. It has been helpful for me (“helpful” is a relative term) to know about the mechanics, especially as I know a bit about the immune system given my boys’ autoimmune issues. I’ll just say that my learning curve is still steep, and while this is all logical it is still hard to really comprehend. And I’m sure I’ll be tweaking this as I understand more b/c it may not pass a medical professional’s muster…
Lymphomas are a cancer that start in the lymphatic system (our bodies’ first line of defense); they are officially a blood cancer b/c the lymphatic system and the blood cell-forming system in bone marrow are closely related. There are actually three types of lymphocytes (lymphatic cells) that travel around the body: T cells (created in the thymus), B cells (created in bone marrow) and Natural Killer/NK cells. B lymphocytes make antibodies in response to foreign antigens, especially microbes. Antibodies basically attach to a microbe, thus making it possible for other white cells to recognize the antibody and ingest it into the cell along with the attached microbe. The cell then kills and digests the microbe. So, the background here is that B lymphocytes – by their very nature – are mutating all the time. (This adds to the complication in treating a B-lymphocyte cancer, because we need those lymphocytes to mutate, in the future, for the right reasons but not to mutate for the wrong reasons. This is a different mechanism from an organ cancer which happens when a bad cell is formed and divides and divides to form localized tumors)
There are two kinds of lymphomas: Hodgkins and non-Hodgkins. There are then more than 30 non-Hodgkins lymphomas (NHL). 90% of NHL’s are B-lymphocyte lymphomas, including mantle cell; there are 14 different kinds of B-cell lymphomas. (Mantle cell is one of the rarer of the B-lymphocyte lymphomas) Are you confused yet? Just wait!
Dr Hochberg had a great way of explaining how the immune system has evolved and needs to work. Basically it has two jobs: to respond to threats (bacteria, pathogens) and not to respond to every protein or cell in the body (b/c that can cause autoimmune disorders like rheumatoid arthritis).
So, imagine a Chinese food menu (Steve commented to Dr Hochberg that he hates Chinese food, but I like Chinese food so I stuck with the lesson) with 9 soups, 8 salads, 12 appetizers, 6 chicken dishes, 11 beef dishes, 7 starch dishes, etc. Imagine all the possible combinations that the system would need to remember; and by the way, it’s all arranged in a linear way with enzymes cutting and rearranging the DNA. So, just imagine how many opportunities there are for mistakes to happen with all those combinations.
In Steve’s case, a mutation developed (a bad menu combination) and his immune system missed that bad cell. (And then it spread – because the lymphatic system is, indeed, a system) Literally, the DNA was rearranged; the system reached into chromosome 14 and matched it to Cyclin D1 for those of you interested in the detail.
The single biggest factor for lymphoma is age – because mistakes are more likely the longer the system is at work. Other activations of the immune system (such as HIV, or autoimmune disease) might show an immune system fragility. The former is Steve’s case, not the latter. In fact, mantle cell lymphoma usually occurs in people much older than Steve – just adding to how special and unique he is.
Seriously – the main concern with mantle cell lymphoma is that it has a notorious track record of coming back and being harder to treat the next time… hence the reason, we are raising our non-alcoholic glasses to the geniuses behind the Nordic Regime (more on that in a future blog)
On a lighter note, my friend and colleague Jengie shared some important insight into Mighty Mouse: “A quick fun fact about Mighty Mouse and my family - When my grandmother first came to this country she was a private nurse to Mr. Paul Terry, the original Mighty Mouse cartoonist. Basically he adopted my grandmother, mom, aunt and uncle and they lived on his estate when they immigrated here from the Philippines. My uncle, who is a great artist, was very influenced by Mr. Terry and he even went on to become a toy designer. My family tells great stories about him.”
Day 1: So, here I am sitting next to Steve in Dr Wisch’s office; he is cracking jokes with the nurses and other patients. In true Yazbak form, I found a small hole-in-the-wall Greek place in Newton Lower Falls that carries lemon soup. This morning wasn’t so great for me; there is a fair amount of anger that goes along with having this intruder in our lives. But all in all, I think we’re doing OK.
It’s 1pm and Steve is having only minor allergic reactions to the Rituxan he is receiving. This is actually an immuno-therapy drug, and the chemo comes tomorrow. For the record, he did sing the theme to "Mighty Mouse"
Last night I spoke with my cousin, Bryan, who lives in Princeton, NJ, and has been battling Multiple Myeloma (another lymphoma) for 8 years. As I emailed with his wife, JoEllen, this morning, that anyone I love has to face any of this is the piece with which I won’t make peace. They are amazing people, and an amazing couple I love and have admired for so long. Bryan was pretty categorical on a number of fronts, and it felt great to hear him tell me we’re going to survive this.
As well, Bryan and JoEllen have mastered the germ-a-way thing, so I am now their most serious pupil. Believe me, once you start thinking about germs, it’s easy to see how OCD happens. Not that I had any OCD tendencies to start with… ;)
I'm sitting in the basement with Kathleen and Lucy (the dog), watching "On Her Majesty's Secret Service" and getting myself ready for the start of chemo tomorrow. The dog always preferred George Lazenby's Bond to Connery or the others. You'll have to ask her why.
Thanks to all of you who sent me emails or voice mails as we got ready to talk to the boys about all of this. The bottom line is that they did fine, all things considered. I met with my guys this morning along with their mom and the talk went well. We focused the conversation on what they need to know right now, which is that I have this disease but that we also have a solid plan of attack. I reminded them of famous and not so famous people we knew who have successfully beaten cancer. This is just one conversation in what is likely to be an ongoing series. They're concerned, and there will certainly be other conversations during the rough days we'll go through to get to the other side of this. But there will be another side, and that was the main message. The boys' mom has been extremely generous and supportive through this, for which I'm very grateful.
Kathleen also sat down with her boys, Lucas and Theo, to share the news today. They wre quite supportive, and I know that they'll do whatever they can to help us get through this.
I'll be honest and say that getting the "mediport" put in my chest on Friday was not fun and still hurts like a son of a bitch. That said, I can now say that I have four nipples. How many other bipeds can tell you that? The discomfort was a sobering reminder that regardless of my attempts at false bravado and compartmentalization, this disease is going to extract its pound of flesh from me before I'm rid of it. I have this odd sense that as we have become increasingly aware of the intruder's presence, it is shedding its stealthy ways. We're about to have war out in the open, without the cold war subterfuge of the last few months (ok, maybe that image came from watching Lazenby foil Telly Savalas on the TV)...
So tomorrow, I start my chemo with a 5-hour dose of Rituxan, which is derived from mouse proteins and attacks the outer lining of the lymphoma cells. At 9:40 a.m., I'll be singing the theme to Mighty Mouse ("Here I come to save the day..."). If you want to sing along with me, you know, as a sign of solidarity with super hero rodents the world over, not to mention solidarity with yours truly, that would be most welcome.
Happy Thanksgiving! We are stuffed like pigs at Christmas, or is it turkeys at Thanksgiving? Castle Hill - and all of you who got us there (you know who you are!) - spoiled us rotten today... We overlooked Newport Harbor holding hands, grateful to be together, so surrounded and so supported as we head into this chemo/immuno marathon. We managed not to think about "stuff" for a few hours... OH, and last night's sunset in Newport was so incredible - and so special.
I remarked to Steve that after our all-day meetings at MGH on Tuesday and Wednesday's trip to Dr Wisch's, I realized how skewed my view of the medical profession had become. I never ever had such an authoritative, competent and confident team describe to me in a holistic way what was going on with Theo which is why I had to become the autism project manager.
I do have a fair amount of understanding now of mantle cell lymphoma - but let's just say I'm leaving the hematology to the specialists.
In this surreal, science fiction story (which I still wish would go away, alas...) we have many strong prayers of Thanksgiving that we live where we live, know who we know, are in the care of these amazing folks, have good insurance, etc . So, yeah, it's utterly weird, random and rare but we have a PLAN that has been tested. I love those Nordics with their icy blue hearts too.
Anyway, the important thing is that Steve and I are ready to rock and roll. And on the tough days I will heed the advice which is etched onto the great new mug that my dear friend Janet gave me: "I'll have a caffe mocha vodka valium latte to go, please!"
Dear friends & family: On the verge of Thanksgiving, we have so much for which to give thanks. That’s true every year, but after today’s visit to the Cancer Center at Massachusetts General Hospital, I think that this is true in spades. We met with Dr. Ephraim Hochberg, who with that name was destined to be a doctor or an undertaker. I guess he split the difference and became an oncologist. OK, that might have been a little dark, even for me, but there’s nothing like a visit to one of the bigger cancer centers in the US to give you a healthy dose of darkness. But, seriously, folks…Dr. Hochberg gave us a thorough explanation of lymphoma, mantle cell in particular, and the amazing genetics of our immune system. I won’t embarrass myself by trying to reproduce his explanation because I know I have two doctors, a nurse practitioner, and a semi-professional medical sleuth (my wife) in this distribution list. Suffice it to say that we all have the ability to create mutant cells as our immune systems battle intruders and it is this very capacity for mutation that can save us or sicken us. Whether it’s lousy luck, bad genes (not a reference to my brother-in-law, of course) or the environment (microwaveable hot pockets), who knows? After all is said and done, this is where I am, and how I got here is not particularly interesting at the moment. I’m much more interested in how the hell we get out of here. And that’s what was so encouraging about today. As you’ll see by reading the article, “Intensive Regimen May be Curative in Mantle Cell Lymphoma,” if I had gotten this diagnosis a year or two ago, it might have amounted to a death sentence within three to five years. The most likely interventions would either get me to remission, only to see the lymphoma return quickly and more aggressively or give me leukemia in the process of “curing” the lymphoma. A new treatment regime called the Nordic study offers the first real hope of long-term survival for mantle cell lymphoma. I agree with one of the people interviewed in the article that calling this a cure is a bit of a reach and I would never want to jinx myself with a word like that anyway. I know that my life is changed forever by this disease. I will carry its scars and I will also carry a deeper appreciation for my own mortality. But I also expect to carry lessons for my sons about the power of courage, perseverance, positive thinking, intensive exercise, and warped humor. The next nine months are going to be a hell of a ride for all of us, and your support of Kathleen and me as we climb two very tough mountains will be essential and cherished. You already have a sense of what the next 18 weeks hold—chemo every three weeks for 18 weeks, with three hospital stays as part of the administration of the drugs. I’ll lose my hair, but evidently there is no guarantee that I’ll lose the hair on my back, so I may still have to get that wax job I’ve been saving up for. I will also have to give up Guinness for a wee bit, so I did drop by the liquor store today to give the owner a hug because I know he’ll miss me. The good news is that it appears that I will be able to see my boys regularly and go to work through much of this period, provided that we’re hypervigilant about avoiding infection through the sort of germaphobe practices that have made Donald Trump beloved the world over. As we’ve known already, the chemo will be aggressive and tough and there are risks that cannot be taken lightly. That said, the second hill will be much steeper and riskier than the first. We met in the afternoon with Dr. Thomas Spitzer, the head of the Bone Marrow Transplant Center at MGH and no relation whatsoever to Elliott nor a regular customer of the Empire Escort Service. The stem cell marrow rescue, as it’s called, involves harvesting my marrow stem cells at the end of the 18-week chemo cycle (probably about two to four weeks after the last treatment). After the stem cells are harvested and frozen, I will be admitted to MGH for at least three weeks. They will bombard me with one final mega-dose of chemo, designed to blast out any remaining lymphoma. At this point, I will basically have no immune system and will be living in a hermetically sealed hospital room that I like to think of as the medical equivalent of Michael Jackson’s house. After about 10 days, they will reinsert the stem cells, which are essentially the “seeds” of my new, improved immune system. They’ll be watching me intensively over the next stretch to ensure that my blood cell and platelet counts are coming back. Once those counts come up, I’ll be on my way to release from the hospital. I will get on a first-name basis with the radiology team at Newton Wellesley Hospital and will be getting CT and PET scans for a long time to come. To think that a guy who has been deathly afraid of needles would end up becoming such a pro at IVs and barium milkshakes (I prefer the banana flavor to the berry. How about you?)… As scary and risky as all of this is, I feel more genuinely optimistic tonight than I have since this entire insanity began back in September. There are no guarantees and plenty could go horribly wrong. But isn’t that true for all of us, in one way or another? All I can ask is to be given a set of weapons and a chance for a fair fight. I feel like those Vikings who ran the Nordic study have given me exactly that, bless their icy blue hearts. OK, this has gotten to be another one of those long missives for which I’m famous. At least my poetry is concise. I thank you all for cheering me on through all of this. It means the world to me, and I’m looking forward to hoisting a Guinness with all of you come the fall. Love, Steve
Hi there: I’m sorry for using email to tell you about this, but as you’ll read below, this is an emotionally challenging time I’m going through, and I’ve found it less trying to send out these updates by email. You can definitely call me about it on my cell; if it’s a bad time for me, I will let it go to voice mail. The bottom line is that over the past month, I’ve been getting some increasingly grim indications about my health, starting with the discovery of abnormally enlarged lymph nodes in my neck in September, a couple of CAT scans, and a biopsy, we now know that I have lymphoma. Here are the headlines:
1) I have a rare form of non-Hodgkin’s lymphoma called mantle cell lymphoma. It only affects about 3,000 Americans, so you now have medical confirmation of how very special I am. My recommendation is that you do NOT get off this email and Google mantle cell lymphoma, because you’re likely to see some info out of context and get freaked out.
2) On Friday, I had more blood work done, a physical exam, and most entertaining of all, a bone marrow sample taken from my pelvis. On Monday, I had a PET scan and EKG. All of those tests let my doctors know two things. First, my lymphoma is stage 4, meaning that it has affected my entire lymphatic system from neck to groin and that it is also in my bone marrow. Second, the PET scan let them know how the cancer cells processed nutrients, and the good news is that the cells reacted the way they expected, meaning that they will be able to trace my response to chemo and the effectiveness of the treatment.
3) I have a wonderful doctor named Jeffrey Wisch, who is the head of oncology at Newton Wellesley hospital, a fellow at Dana Farber, and most importantly, an expert on treating mantle cell. He’s done this before, and as he emphasized to me, patients have gone through treatment with this and gotten better. Dr. Wisch will be coordinating my care with the world-leading oncology team at Mass General.
4) That encouraging news aside, I will tell you that this is not a run of the mill lymphoma and the treatment will not be run of the mill either. The chemo will be aggressive, with the goal of getting me into remission as soon as possible. What is encouraging is that I am not currently symptomatic and am in excellent physical shape, if I do say so myself. That makes my prognosis much more encouraging than would otherwise be the case.
5) When I successfully get to remission, I will be looking at a stem cell transplant to allow my bone marrow to regenerate and for my immune system to work again. In all likelihood, they will use a new method that involves harvesting my own stem cells, cleaning them of the lymphoma, and transplanting them back. That’s several hurdles down the road however, so I would prefer to focus on the battle at hand, which is ridding my body of lymphoma and getting to remission.
6) I will be starting chemo the Monday after Thanksgiving. While a few details are still to be worked out, it looks like I will be getting a day of chemo every three weeks for six cycles, meaning that the therapy will last 18 weeks. Three of the treatments, including the first one, will be out-patient treatments at my oncologist’s office in Wellesley. The other three will involve 48-hour hospital stays because the treatments will be taken at precise 12-hour intervals.
7) “Life is what happens while you’re busy making plans,” John Lennon wisely observed. More than anything else, my ability to make plans and commitments through this period will be pretty limited, to say the least. I’m hoping to be able to work in between treatments, although how much of that will be at my office versus working remotely will depend both on my own strength and on my doctors’ assessment of my ability to fight off infections. I will take the good advice of many of who have gone before me and listen to my body and put my health first. I will also take the advice of Dr. Wisch, who reminded me today that I should not live my life in a bubble, that I should not let cancer own me.
8) I’m lucky in more ways than I can begin to elucidate here, but let me cite a big one: I have an incredibly talented and caring wife, Kathleen Yazbak, who has already walked across hot coals to share a life with me and is now turning all of her talents for Lebanese networking and professional recruiter research to helping me fight this battle together with her. We found Dr. Wisch as well as Dr. Morton Kahan, the wonderful surgeon who performed the biopsy, through my father-in-law, Fouad Yazbak’s Lebanese/Egyptian Medical Mafia, which is based out of (where else?) Rhode Island.
9) I will be talking to my sons, Roddy (13) and Louis (11), the Sunday after Thanksgiving. If you are part of my Arlington network, please do not share this news with anyone in Arlington until after I’ve had a chance to talk with them. I’m grateful to the boys’ mom, Maria Gonzalez, for the support and flexibility that she’s offered me. We’ve done a good job of co-parenting after a difficult separation and divorce, and I know we’ll both support our boys through this new set of challenges.
As I suspect you’ll be quite upset if you’ve read this far, let me assure you that I’m doing just fine. I’m sitting in my favorite comfy chair with a blanket and my dog Lucy next to me, catching up on email and listening to NPR. Despite being literally radioactive on Monday so I could do the PET scan, I felt well enough to bike 21 miles that afternoon and another 20 miles this morning, and it felt great. I’m determined not to act sick until my body tells me to. Don’t cry for me, Argentina. I’m going to beat the shit out of this thing, even if it gives me a pretty good beating in the process.
I never wanted to prove myself this strong, but here I am. Reminds me of a variation on that old Groucho Marx line that I was thinking of while sitting with all of the poor souls in the waiting room at the oncologist’s Friday—“I don’t want to belong to any organization that would have me as a member.” So here I am a member of an exclusive club that no one wants to join, but once you’re in it, you only want to reach out and help the other members of the club, to crack a joke to a nurse and hear an old lady with a walker giggle when she overhears me. What else are you going to do? You can’t quit the club.
The best thing you can do is keep rooting for me while I deal with this stuff. Being who I am, I’ve set up a blog that I will share with family and friends about how I’m doing emotionally through all of this. May not be your cup of tea, but it’s called Poetry of Strong Living. Maybe it will help some others going through this someday…On a lighter note, if you’re on Facebook, you can join the group my brother set up for me, “Make Steve Pee His Pants,” in which various friends and family attempt to make me laugh hard enough to…well, you get the idea.
You may feel free to share this email with others so they know what’s going on. Let me tell you again that I am going to be strong through this, because I have a lot to live for and a lot to still give this world. I feel the love and prayers of my friends and family every day, and I ask you to keep them coming, maybe with FedEx thrown into the bargain.
Posts
