Prevail, LA - a very special thank you

"Breeeaaaaaaaathe. Do the combo and then take three deep breaths to slow your heart rate and get in control. Fight hard, but fight smart. You got this!" Milan briefly paused the masterful work he was doing on the bag next to me to deliver this important message. It had been 7 weeks since I last worked out at Prevail, Los Angeles, the boxing gym that has played a huge role in helping me survive cancer treatment over the past year.

From day one, I knew that Prevail was a special place and was immediately hooked. I'd been grinding hard at work and was in the worst shape of my life, having spent six months or so doing half-assed 20 minute workouts on the bike or short, slow runs. I'd been an athlete my whole life and the joke of an exercise routine that I'd fallen into simply wasn't me. Thankfully, my workout inertia ended abruptly when I joined Prevail and Coaches Lolo and Milan quickly whipped me into shape. Lolo's classes were electric and Milan's humble leadership, magnetic. Every day, I looked forward to going to boxing (and maybe even dreamed about it a few times…) and as the weeks passed, Prevail quickly got me into great condition, just in time for the fight of my life.

On September 9, 2014, I was diagnosed with late stage Hodgkin's Lymphoma and have since endured 34 rounds of chemo, 32 nights in the hospital and an autologous stem cell transplant and just started a year-long course of antibody therapy. The Prevail family has been there for me at every step of the way, cheering me on and supporting me as if I was kin. I’ve been lucky enough to be physically able to keep working out during treatment and Prevail has been part of the foundation of my life during this insanely challenging period.

My return to Prevail signified my return to normalcy after each chemo session. It was liberating to sweat out the toxins, use my muscles after days of being a couch zombie and punch through the intense emotions, exacerbated by heavy doses of steroids, that come with having cancer at age 28. Prevail was one of the few places where I could completely forget that I was a cancer patient and be myself, which was a tremendous gift and made treatment more tolerable. The workouts, however, only scratch the surface of what Prevail has done for me over the past 14 months.

I had been a member of the gym for only a couple of months when I was diagnosed, and despite the fact that we didn’t know each other well, Milan and Gina made sure I had Prevail gear to wear on my first day of chemo to remind me that if I was tough enough to get through the workout, then I would be tough enough to get through chemo. Each time I walked through the door after treatment (and also during treatment via text and email) the Prevail team would check in with me about how I was doing. They even put me in touch with their friends and family members who are cancer patients or survivors and referred me to doctors that had helped their loved ones. The coaching staff also watched me like hawks to make sure that I took breaks when I needed them and didn’t overdo it. And when I was hospitalized for treatment, they came to visit and walked laps with me in the courtyard with my chemo IV pole in tow.

When I joined Prevail, Milan delivered the official welcome that he gives to all new members and with great sincerity said “welcome to the fam.” It's not a cliché and this greeting genuinely embodies the gym's ethos; Milan really means "welcome" and Prevail really is a "family". Milan and the incredible team that he assembled have created a world-class fitness boxing program with an infectiously positive and supportive culture. It has been a pleasure to watch the team and the gym grow from a start-up to a flourishing, wildly successful enterprise, while maintaining the quality of its product and integrity of its culture.

I want to thank the Prevail family from the bottom of my heart. I am forever grateful for your generosity and support and could not have made it through the past year without you. I feel incredibly lucky to have accidentally wandered through your doors in July 2014 and am thrilled to finally be back at Prevail on a regular basis. The Prevail family is truly the best. Thank you so, so much.

 

  March 2015 - Celebrating finishing 6 months of AVBD by sweating it out at Prevail surrounded by positivity and good vibes.

 

March 2015 - Celebrating finishing 6 months of AVBD by sweating it out at Prevail surrounded by positivity and good vibes.

  April 2015 - hanging out with the Prevail Team at the Nike Women's LA event, which was one of the most fun nights of my life.

 

April 2015 - hanging out with the Prevail Team at the Nike Women's LA event, which was one of the most fun nights of my life.

  April 2015 - the day before I started IGEV, leading up to the stem cell transplant. Once again, Prevail has my back!

 

April 2015 - the day before I started IGEV, leading up to the stem cell transplant. Once again, Prevail has my back!

July 24, 2015 - My 29th birthday and 6 days before my stem cell transplant.

  September 2015 - FINALLY back at Prevail.

 

September 2015 - FINALLY back at Prevail.

11/19/15  - back at Prevail, with a head of hair and eyebrows!

11/19/15  - back at Prevail, with a head of hair and eyebrows!

Thank you and an update

I don’t have words to adequately thank the friends, family, acquaintances and friends of friends who showered us with love and support over the past year. Your kindness and generosity are unmatched and we could not have gotten through this year without your unwavering support. So many times, your wonderfully overwhelming generosity and love have moved me to tears.

Despite having drawn the short straw with undetectable late stage cancer in my twenties, I feel that I am one of the luckiest guys in the world because I have such amazing people in my life. Thank you so much for all that you’ve done for Allison and me and our family during this immensely hard year. Please forgive me for lacking the ability to concretize my thanks in a way that even begins to scratch the surface of the gratitude for your kindness that I feel acutely every day.

I also want to give you an update and about how I am doing. Generally, I’m doing well in terms of my recovery from the stem cell transplant. I’m able to exercise and I am slowly getting back into the office. The challenging part is that it’s not “over,” which, for me is hard to come to terms with. After going through the hell I’ve been through, it feels like it should just end abruptly and vanish from my life, but that’s unfortunately not a reality. I’ve completed some awful treatment and the really bad stuff, more likely than not, ended with the stem cell transplant. People keep asking me, “so, you’re good right?” (and don’t feel bad if you’ve asked this, it’s OK). I don’t know how to answer that question. If you have one cell of the disease, you have it. It’s very black and white and unfortunately, the scans can’t tell definitively if something is hiding in there. So, for the next year or two, it’s going to be a game of sit and wait. With each clean scan, I’ll get further and further out of the woods.

THE GOOD NEWS is that I had a CT scan in late October, which was promising, but inconclusive. All of the masses in my chest are completely gone and my lymph nodes look normal. I did not have a PET scan, because in the few months post-transplant, PET scans aren’t reliable and give a lot of false positives. I’ll have a PET/CT scan in a few months to see how I’m doing.

The week I was released from my transplant hospitalization (good freaking timing), the FDA approved an antibody therapy called Brentuximab Vendotin (BV) for HL patients at a high risk of relapse post SCT, which according to my SCT doctor, improves the likelihood of “progression free survival” (aka cure) by up to 20%. That’s pretty damn good and means that I’ll be in the up 70%-80% likelihood of cure range with BV. My general oncologist stresses that the stats aren’t particularly meaningful, because they represent mostly people who have been highly resistant to chemo (the disease got worse during treatment) and people who are much older and/or in poor physical condition, both of which are not me. When I started the first line of treatment (AVBD chemo) I had a TON of disease and it was all over my lungs and in my neck. By the time I finished the AVBD, I was in remission and had virtually no disease. My general oncologist believes that I may have been cured with a few more cycles of AVBD, but, unfortunately, the protocol is to draw an arbitrary line at 6 cycles and move onto harsher treatment if scans aren't completely clean.

So, now the plan is to do a year of BV treatment where I will go in every three weeks for an infusion and complete 16 cycles. BV is chemo, but has low toxicity and only targets cancer cells, unlike regular chemo, which kills everything. It supposedly is unlikely to be meaningfully disruptive to my life other than having a long doctor’s appointment once every three weeks. I had my first BV infusion on November 2 and it was fine. I felt a crummy for the rest of the week and am not sure whether I had a bug or whether the treatment made me feel sick. As I’ve been doing for the last year, I will continue to play it by ear, see how I feel next cycle and adjust as needed. Also, the potential side effects (fatigue, hair-loss, peripheral neuropathy, lowering of blood counts and nerve damage) are cumulative, so we will see if any of these develop.

For me, life post-transplant has been very challenging. A lot of things seem muffled because I have such low energy reserves, but I’m trending upwards and each day and week and month that passes, I gain awareness and more energy. I am rebuilding my life and especially my body and my mind. It’s the hardest thing I’ve ever had to do, but it’s all moving in the right direction and will take time.

So that’s what’s going on with me. I don’t want my sincere thanks to get lost in the update about what's going on with me. I cannot thank you all enough. Thank you from the bottom of my heart!

 

Waiting Game

Hey everyone, Allison here.  I'm taking over to let everyone know how Jonno is holding up.  Jonno finished six days of high dose chemotherapy and received his stem cells on Monday August 3rd.  As a result his immune system is non-existent and he is required to stay in isolation until his body can rebuild its defenses.   He is extremely fatigued but has otherwise tolerated things pretty well.  If you don't hear from him please don't take it personally.  He just doesn't have the energy to communicate right now.  I will keep you all posted on his recovery and thank you all for your continued support and kindness.  

Walk the walk

Day 5 of chemo. 8 infusions complete. 2 more to go. Today I walked 8.43 miles, 6.3 yesterday, 5.9 Thursday and. 5.47 Wednesday. I'm feeling like a badass. Eric Berry is also giving me inspiration. Dude is back playing in the NFL after chemo. Not going to lie though, it's maddening being cooped up in the hospital, even with the outdoor walks inbetween infusions. Trying to focus on everything I'm thankful for and approach this with Gratitude! As my shirt says, "Stay Positive Bro, Never Give Up...". That's what I'm doing.

image.jpg
image.jpg
image.jpg

Day -6

That's the medical name for today, "day -6." For the next 6 days I'll receive chemo that's 5 to 6 times stronger than anything I've had to date. On "day 0" I'll be "reborn" (they say it's your new birthday) and I'll receive my own stem cells to regrow my immune system that the chemo will have killed by that time, along with any residual disease. After that, I'll wait about two weeks in an isolation chamber in the hospital until my immune system grows back to a level that's safe for me to leave. Isation is a bit of a misnomer as I can have limited family visitors and potentially leave the room for a short walk around the transplant ward. But that's it.

Am I scared? Absolutely. Am I excited? Absolutely. Am I grateful? Absolutely.

This will be one of the hardest things I have endured in my life to date. No question. But I'm so excited to get this over with. It will likely and hopefully be the end or towards the end of a long road to a cure. So please, send me some good vibes and love from wherever you are. I need as much positive energy in the universe as possible over the coming weeks.

Thank you for all of your love and support to date! 

 

JBD

I'm gonna be wicked bored and need your help!

I'm about to be ridiculously bored and I need your help to come up with some creative solutions for passing my time. On Tuesday, July 28, I'm going to be admitted for about three weeks at Cedars Sinai for my stem cell transplant. I'll be in partial isolation (translation - limited/no visitors and really, really, really bored). Obviously, I'll have less room to do what these geniuses have done, but I need this kind of creative thought from all of you!

I've put together a form below that will populate a spreadsheet of your brilliant ideas for movies, TV shows, ipad/iphone games and anything else you can come up with. During my past hospital stays, I've found myself fumbling through nextflix, HBO go, TWC on demand, etc... and watching absolute crap. It would be so great to have a list of really interesting, fun, funny and/or captivating shows or movies to watch.

A couple of people have already made some awesome suggestions, like rosetta stone and meditation via the headspace app. I'm also considering studying dog training videos so we can teach Lucia some cool tricks when I'm out of the hospital. I'm all set with book suggestions for the moment. Many of you have kindly sent a library of best-sellers that I'm enjoying tremendously and still working through. 

So, I'd really appreciate it if you could provide some suggestions by doing the following:

  1. Check this link before filling out the form to see if someone has already recommended what you're about to suggest. It will take you to a spread sheet. Just CNTL+F (search) your idea to make sure it's not already there.
  2. Fill out the form below with your suggestions. You'll have to submit a new entry for each recommendation. Sorry about this! It'll make my life a lot easer when it comes to sorting through the recommendations.

Thanks so much for your help!!!

JBD

Name
Name
Type in the name of the movie, TV show, book etc...

Hee Haw we're harvesting

Quick update. I had a temporary catheter installed in my neck this morning and I'm harvesting stem cells. This hopefully won't take more than a day or two. Fortunately, it's outpatient, so I'll be able to sleep at home tonight. 


My transplant is scheduled to be the week of July 27th. Unfortunately I'm not going to be able to have visitors. Until then, I'm gonna have me some fun! 

 

image.jpg
image.jpg
image.jpg

A tip for how to address a stranger who looks like he or she might have cancer

SMILE AND SAY HELLO! Yes, it's awkward and perhaps intimidating to look a cancer patient in the eye. Maybe people focus on our lack of eyebrows or sallow skin. Maybe they're just sad to see someone going through what they imagine to be tremendous pain in every sense of the word.  

Solution: regardless of what you may feel, just smile and say hello.

This goes for anyone you may see with a physical condition that makes you feel uncomfortable. You know what it feels like when someone is staring at you or looking through you. Like when you play eye contact chicken on public transport and sheepishly look away from the person across from you before your eyes lock; you know they're looking at you too and you wait anxiously hoping that their stop is the next so that, God forbid, you don't accidentally make eye contact and escalate the awkwardness. Or you know, when you feel like people are looking at you strangely and eventually realize after few minutes that your middle shirt button is undone or that your underwear has come out to sun itself...

This happens every day to cancer patients. It's not momentary or situational awkwardness. Knowing that people are avoiding eye contact or are looking at you strangely lurks over you like a shadow and unfortunately, you can't get rid of it by buttoning your shirt properly or rearranging your underwear.

Peoples' stares or avoidance of eye contact are not I'll-intentioned. If I saw a guy with half of his face burned off, I'd probably have a similar reaction to how people look at me with my bald-head and sparse eyebrows. But, damn it, we are all human and we should do a better job of making people feel welcome, regardless of physical appearance. I'm as guilty as anyone when it comes to this, but I'm committing to welcoming people and hope that you'll join me.

 "This is a nice thought, Jonno, but where's this coming from?" You may be asking yourself. Fair question.

This morning I walked down to the hospital cafeteria here at UCLA hospital in Santa Monica to get a coffee. People looked at me like I was a ghost. (To be fair, I had forgotten to brush my teeth, so maybe it was my morning breath that set the stage.) No one could look me in the eye. Four or five people looked straight through me as I passed, towing my chemo stand on wheels (it looks like a metal version of an old fashioned coat rack with IV bags hanging off). I grabbed my coffee and went to sit outside because I'd been indoors for a long time. It is a rare dreary day here in Southern California and is cloudy with a cool lower 60s temp (I know, boo hoo, lower sixties - dreary in Boston means horizontal rain and 37 degrees). As I sat at the picnic table I felt small, which for me is rare as I'm 6' 3" and currently around 230 lbs (thanks to all the steroids I am required to consume). I drank my coffee quickly so I could get back to the judgment-free zone and privacy of my hospital room.

When I finished my coffee, I went back into the cafeteria and a woman who sat at a table directly opposite the double doors looked me smack dab in the eyes with a wide grin on her face and said "good morning, how are you today?"

I immediately felt human again. From ghost to person, her kind gesture melted my isolation instantly. Thank you stranger.

Remember, just smile and say hi. It goes a long way.

Update to 7/1/15 Post - Murphy's Law

The docs are finally, mostly on the same page. Just got a call from my Onc at UCLA. Tomorrow or Friday I will go in for one more IGEV and will get out on Monday or Tuesday. My doctors feel that this is the safest approach, so I'm on board with that. I mean, what's the difference between 20 and 24 infusions at this point (I'll be at 24 after this cycle)? After that, I will do high doses of Neupogen (white blood cell stimulant) until my white blood cells are high enough (>10) to start harvesting my stem cells. Harvesting will likely start July 13th or 14th (Allison's birthday - Happy Bday Allison!) and will last as long as it takes to harvest enough stem cells (likely 3-4 days). Transplant will be in late July or early August. Stay tuned...

Honestly, though... WHATEVER! IT'S A CURE! 

 

Again, thank you all!!!

What's up doc? Good news and some venting...

I've been waiting to post until I have more info, but have been in limbo long enough over the past week that I need to get it out there. I so appreciate that you all care and want to know what's going on. As described in my last post, what's going on is very complicated.

GOOD NEWS

My PET scan last week came back clean! This is my FIRST clean scan since I was diagnosed in September. This is huge and means that I am eligible for the stem cell transplant. This happened much faster than my doctors anticipated. Yay!

The annoying news: My doctors at UCLA and Cedars Sinai are working to get on the same page as to wether I need another round of IGEV chemo before transplant. I was supposed to go in for IGEV yesterday (6/30/15), but that's on hold until my doctors get on the same page. If they can get the insurance process moving quickly enough, then I won't need another IGEV. If not, then I will need another round, because the longer I wait between the last round of IGEV and the stem cell transplant, the higher the risk that the disease comes back prior to transplant. This could potentially lower the efficacy of the transplant. Think of it like a bacterial infection. If you wipe it out only partially with antibiotics and let it come back, it can be more resistant to the drugs. Same deal with Hodgkin's. Don't worry though, we are still in the "safe" zone and the doctors will not let too much time pass.

In the interim, Allison and I went to Cedars yesterday for a "Pre-transplant Workup" that lasted about six hours and consisted of an EKG (heart), echocardiogram (heart) and pulmonary function test (lungs - translation: blow into a tube until you get a headache and black out), meetings with a nutritionist, social worker and the bone marrow transplant coordinator and a tour of the blood donor facility where they will harvest my stem cells. It was an exhausting day, but was amazingly efficient. The transplant coordinator, a nurse practitioner, named Lety squired us about the hospital and made sure everything ran smoothly and quickly.

This PFT blows!!!! Hahaha

This PFT blows!!!! Hahaha

NOW TO VENT

The funniest/most absurd thing that happened yesterday was as follows. My oncologist at UCLA prescribed medical marijuana to mitigate chemo side effects. It is a Godsend when it comes to nausea, neuropathy, anxiety and sleeplessness and causes none of the side effects that the individual medications to treat the above-listed chemo side effects do. Despite the fact that my oncologist, a doctor, prescribed it as a legal medication, widely recognized to help cancer patients, to me, a cancer patient who has had 20 chemo infusions in the past 10 months, Cigna decided that I am "at risk" for substance abuse and required me to sign an "Abstinence Agreement" as a condition precedent to Cigna covering the transplant and consent to random drug and alcohol testing. That's right, I am no longer allowed to use a medication that my doctor prescribed and I am, in Cigna's eyes, an alcoholic, despite absolutely no evidence to corroborate this absurd supposition. Not only did you (Cigna):

  1. make me switch hospitals from UCLA to Cedars for my transplant, despite the fact that I've been treated at UCLA for 10 months, which has caused me to spend 50-60 hours over the past few weeks on the phone coordinating the handoff between hospitals, which is still a mess, and wading through knee-deep bureaucratic bullshit, which may cause me to get a session of IGEV chemo that I don't need because it's hard to get doctors from two hospitals on the same page, but also;
  2. to add insult to injury, you've now flagged me a a substance abuser based on absolutely no fact other than my medical records show that my doctor prescribed legal medical marijuana to me in order to mitigate chemo side effects.

Are you effing kidding me!? Would you make a lung transplant candidate sign an abstinence agreement swearing that they would not use opiates prescribed by their surgeon during and after the surgery for pain management? No, you wouldn't, because that would be REALLY STUPID.

REITERATING THE GOOD NEWS 

My venting and administrative nonsense aside, all that matters is that I responded very quickly to IGEV, my scan is clean, and regardless of whether I have another IGEV, I will be moving forward with transplant. This is VERY GOOD NEWS. If I don't need another IGEV, my transplant will likely start the week of July 20. If I need another round, then it would likely the following week (July 27, 2015).

Thank you, thank you, thank you for your love and support!

This is what's next

I got out of the hospital on Saturday and my mom was here to take care of me for the weekend and to give Allison a break. It was great to see my mah! A lot of you have asked questions about the plan for my treatment moving forward and, until Wednesday, I didn't have enough info provide a complete answer. On Wednesday, Allison, Mindy (our friend) and I met with Dr. Michael Lill, the head of bone marrow transplants at Cedars Sinai. He goes way back with my primary oncologist, who I adore, so it was no surprise when Dr. Lill and I hit it off. To date, I've been treated at UCLA, but my insurance isn't contracted with UCLA for bone marrow transplants, which is why I am headed to Cedars. Last week, I did a lot of negotiating with people who provided dmv clerk like service. I came very close to literally banging my head against the wall (but my platelets (stuff in your blood that prevents you from bleeding) were too low, so that would have been really dangerous). Weeding through bureaucratic mumbojumbo while hooked up to a bag of chemo is not fun. Whatever...we figured it out. I'll save my crusade for shaming health insurance until I have more energy and am cured.

So what’s next?

The path forward involves some more IGEV chemo and, eventually, an autologous stem cell transplant (SCT, aka bone marrow transplant, or BMT) (described in detail below). We are still talking outright cure here. What's up in the air is how many more cycles of IGEV chemo I will need prior to SCT. The results of my PET/CT scan on Thursday, June 25, 2015 will dictate the timeline and the number of additional cycles of chemo I need prior to transplant. My doctors want the disease to have the smallest possible footprint before transplant, which means that the PET scan needs to show that I am in complete remission (CR). Dr. Rosen at UCLA describes a PET scan as a geiger counter for cancer cells; PET scans show "hot" activity, i.e. active cancer cells. If the PET is clean, I'll move to transplant. If it isn't clean, I will need more IGEV chemo, and won't go to transplant until the drugs have achieved CR, or close to it. 

I should have the scan results back on Friday, or Monday at the latest.

If the PET scan shows that I'm in complete remission

If my PET scan is clean and shows that I'm in CR, then the SCT process starts when I get out of the hospital on July 4th after my next IGEV chemo.

The doctors harvest stem cells when white blood counts are low because this is when the body creates new stem cells most productively. Chemo makes one's WBC count plummet, so we will harvest right after a cycle of chemo; this is referred to as "harvesting off of chemo". 

During the week of July 6, 2015, the insurance authorization process would kick off and I would go to Cedars for a litany of tests to ensure that my body is strong enough to endure the SCT according to Cigna's criteria (my insurer). My doctors are certain that I'll pass this with flying colors. Allison and I will also meet with a number of the administrative and medical staff at Cedars to get a plan together for the events leading up to, during and after the SCT.

The following week, we would harvest my stem cells. The timeline is a bit in flux for the harvesting because it will all depend on my WBC levels. July 16-19, I would go to Cedars outpatient cancer center daily, where they'd give me high doses of Neupogen, a drug that stimulates white blood cell production and stem cell production. It could take 1 day or up to 4-5 days for my body to produce enough stem cells to harvest.

Likely, the actual harvesting would take place on July 20-24 (my 29th birthday), but could be earlier if my stem cells reproduce quickly enough. Here's a great article about stem cell transplants. For more information about what I am about to go through, feel free to check it out.  Scroll down to the section called "How are the stem cells collected?" for more info about how the harvesting process works. To put it simply, I will go to the outpatient cancer center at Cedars daily, for approximately 5 hours each visit,  and they will collect my stem cells. During this time, I'll have a catheter installed in a vein in my neck or my arm (TBD), with a two-way stream. Blood will come out one way, from which they'll harvest the stem cells and store them in liquid nitrogen until the transplant, and go back in once they've harvested. I will do this every day until they have enough stem cells and it will likely take 2-4 days to get the number of stem cells needed.

The following week, the transplant would commence. I'll be in the hospital for a total of 18-21 days, assuming I don't have any complications. Recovery will take a few months once I'm out of the hospital.

What the SCT Entails 

I will receive high-dose chemo for five days (approximated 5 to 6 times more intense than the chemo I've received to date), which will kill all of my bone marrow. Once my white blood cell (WBC) count is zero, indicating that my bone marrow is all dead, they will re-introduce my own stem cells into my body of a course of approximately 10-14 days, until my WBC counts are high enough that it will be safe for me to go home. After the SCT, it will be a few months before I go back to normal (relatively). 

If the 6/25/15 scan doesn't show CR

I will need more cycles of the IGEV chemo (I'm now 2 IGEV cycles deep) and once I've achieved CR, we will move to SCT. If, for some reason, IGEV doesn't get me to CR, then we will try a different type of chemo to get the disease to the minimum footprint possible before transplant, but let's not go there until we have to.

More treatment after transplant?

It is possible that I will need additional treatment after the SCT, but it's too early to know. Possible treatments include a promising new antibody treatment, called Brentuximab vedotin and/or possibly radiation.

So what does this really mean? 

It's gonna be a long few months. The IGEV treatment is really unpleasant and I have a bunch of annoying side effects. The high-dose chemo will be brutal and it will probably make me nuts to be in the hospital for three weeks. I get caged-animal syndrome pretty quickly. 

But, who cares. It's a cure. These next few months are going to suck physically, but I will continue to find peace and joy and have fun. All things considered, it ain't that bad.

Thanks for reading this. I know it's really long, complicated and probably confusing. As you can imagine, it's hard to explain verbally, so here it is for your reference.

Thank you all for your love, help and support. We can't thank you enough.

JBD

Brohawk

I have ALWAYS  wanted a mohawk. Maybe it's my Native American heritage. Maybe it's because Chuck Lidell looks so badass, who knows. So yesterday, when my hair started falling out, I called up my friend, Ryan Lewis (he's a superstar, but he's not the musical superstar, Ryan Lewis). By the way, I'm totally fine with losing my hair. I get the sweet haircut pictured below and will get to rock the Mr. Clean look for a while. Also, better me lose my hair than a woman! Happy to take one for the team.

Ryan is an artist in more ways than one. I've never had anyone sculpt my hair like Ryan does. His attention to detail is unbelievable. Ryan is also an accomplished photographer, teaches styling all over the country and is one of the kindest and best dudes I know. He's been cutting Allison's and her Mom's and sisters' hair for years (he now cuts my, Allison's Dad's and my sister's hair). When he first heard that I was sick, he offered to cut my hair, pro-bono. What Ryan didn't anticipate was, that I wouldn't lose my hair for the first 10 months of treatment... sorry Ryan! In addition to being thankful that I didn't lose my hair until now, I'm every grateful to have gained Ryan as a friend. Ladies and gents, if you live in LA and Ryan doesn't already cut your hair, get over to Saulino Smith ASAP and get in with Ryan. You'll never want anyone else to cut your hair...ever. 

Below is a picture of Ryan and me after my cut yesterday. Ryan, being the artist that he is, wanted to give me a really cool "Premier League" mohawk. We've decided to call the cut a "Brohawk". I gotta be honest, it looks pretty badass. Ryan, you're the man. Looking forward to playing some golf with you soon. Thanks again brotha!

Week off!

Hi Friends,

First and foremost, I'd like to thank you for your love, kindness and generosity. To describe the overwhelming and selfless response that Allison, my family and I have received from you as an outpouring would be like calling biblical floods a rain shower. It has been nothing short of amazing and I am so grateful to have you all in our lives.

I've been out of the hospital for a week now and have been recovering nicely. Other than a fever here and there, some bone aches and a very itch rash from an allergy (likely to one of the chemo meds), I feel really good. I'm more fatigued than normal, but have been able to remain active. I can't go back to boxing and yoga yet, because my white blood cell counts and platelets are too low, but I'm hopeful that I'll be able to return next week. In the meantime, walking, hiking and video yoga sessions will keep me busy. Also, my sister, Margot, is visiting and we've been having a blast hanging out. I've been really excited for her to meet our dog, Lucia and, not surprisingly, it was love at first site.


Anyway, just wanted to let you all know that I'm doing well and looking forward to enjoying my second week off of chemo this week.

If you want to help out, visit www.csource.support/helpus. We've re-vamped the way we are doing this and I think is simpler and easier to use. Thank you again for all of your help and support.

-JBD

Suggestions and other Tidbits

First and foremost, thank you to everyone for your love and support.  Your kind words and well wishes have made all the difference.

If you're interested in sending Jonno something that is off-registry, see below for some guidelines and suggestions. 

Food and Treats

  • Jonno is trying to stay super healthy during treatment so if you're going to send food, please avoid candy and anything with artificial ingredients.

Wellness

  • Massage
    • Chemotherapy causes something called "neuropathy" which causes numbness, pain, tingling and the sensation that your extremities have fallen asleep.  Massage, particularly foot massage has been known to help relieve these symptoms.
  • Bath and Body Products
    • Chemo ravages your skin but moisturizers and soothing skin care products can help.  Jonno is sensitive to smell so something lightly scented or unscented is best.  They should also be free of chemicals or artificial fragrances.

Entertainment

  • Shout-outs
    • Hospital time can get boring and lonely. Drop Jonno a line!  An e-mail, Facebook message, text or phone call is always appreciated.  He may not always be able to answer but he will love hearing from you.
  • Music, Movies, Books
    • Jonno loves music almost as much as he loves Allison (jk... but not really).  He is always interested in discovering new stuff so send him Spotify playlists, Dropbox downloads, iTunes suggestions, etc.
    • Send us suggestions, books or DVDs!  Lots of downtime means plenty of time to catch up on series, your favorite movie or book.   
  • Visits
    • If you're in the LA area, contact us to set up a time to say hello. 

 

Update: I am fighting cancer

This is hard for me to share, but I've been keeping it relatively private for the past eight months and I need to get it off of my chest. I have cancer and I need your help. In September, I was diagnosed with Stage II or IV (medical opinions differ) Hodgkin's Lymphoma (HL), just three weeks after Allison and I got engaged. I finished 6 months for a total of 12 infusions of AVBD chemotherapy in February. Fortunately HL is a curable cancer and 90% of HL patients are cured, most with AVBD alone.  AVBD got me most, but not all of, the way there. I will be one of the cured eventually, but we've got some serious work to do to get me out of the woods.

Today, I begin a new treatment regimen that will consist of: 1) "salvage chemo", which will be in-patient and last 9-12 weeks (I'll be in the hospital 5-6 days, every three weeks), 2) a week-long in-patient, high-dose, continuous chemotherapy treatment, and finally 3) an autologous stem cell transplant (meaning harvesting and re-introducing my own stem cells into my body) during which I will be hospitalized for 2 weeks or so. The next 4-6 months are going to be rough and this will be the fight of my life. But don't worry, I've been training for this my whole life with football, wrestling, lacrosse, boxing, music, love, laughter and friendship. I've got this! Also, I was able to keep training for boxing the first six months of chemo and I don't plan to stop this time!

May 18, 2015 - Boxing at Prevail Los Angeles to set the tone the day before chemo! Big shout out to Prevail. They've been there for and with Allison and me at every step of the way! I'm so lucky to have them in my life.

May 18, 2015 - Boxing at Prevail Los Angeles to set the tone the day before chemo! Big shout out to Prevail. They've been there for and with Allison and me at every step of the way! I'm so lucky to have them in my life.

Before I go any further, I need to say this: Allison Towle is the most amazing life partner I could ever hope for. She's been there for me in more ways than words can express. She's been my rock - a mountain of a rock.

I am NOT looking for a pity party. If you saw me, you'd never know I was sick. Life is so, so good to me. I am marrying the love of my life (we are actively planning the wedding), have the best family and friends I could hope for and the best dog ever, a great job and so much happiness in my life. I'm approaching this experience with gratitude rather than fear or sadness. I am so thankful for what I have and I have big goals and ambitions for my long, happy life. You are all a huge part of what I have to live for and thinking of all of you will help me beat this.

During the first six months, I couldn't bring myself to publicly announce that I was sick. I don't know whether it was pride, fear... who knows... but I didn't do it. I wasn't good at asking for help. I've learned from that experience and need all of the help I can get. Below, I have outlined what Allison and I do and don't need. We would greatly appreciate your help!

How to help

We have set up this website where you can 1) get updates about my progress, and 2) sign up to provide meals, rides or other items that we need. Think of it as a blog about my progress and a wedding style registry for stuff we need while I'm being treated. This should help streamline the process. We will probably register for new items on a weekly and then daily basis. We will post on facebook when we have added new items. (Note: we are working on a very advanced version of this and ultimately will launch a care technology startup company. It will build a lot on this site, but we haven't had time to get the mobile app in shape, so this is what we have for now. Stay tuned!). The instructions for the site are listed here. Please review them if you want to help.

We likely won't need much while I'm in the hospital this week as they have a cafeteria and I won't be going anywhere, so please stay tuned for posts notifying you that we need help.

What we need:

  • Meals

    • Providing meals will help us tremendously. It will mean that Allison or one of our family members can focus on taking care of me, instead of stressing about the grocery store and cooking, especially when I am sick from chemo. If you live across the country, you can still help out by ordering via seamless, grubhub, eat 24 etc...

  • Rides

    • Allison is working full-time as a corporate attorney throughout my treatment. Sometimes she's not available to get me from a to b, so I uber. If you can physically provide a ride or pick up the tab for an uber, that would be amazing.

  • Wellness items

    • Massages, acupuncture, therapy etc... are really expensive. I've spent thousands of dollars on this stuff. My bank account is hurting. It is REALLY hard for me to ask for help with this. If you can help pay for even a portion of one of these items, it would help me a lot.

  • Or anything else you'd like to provide

    • If you want to help out with something for which we haven't registered, that is very kind of you! Please sign up to provide the special item on our site and we will let you know if there's a reason why we can't accept it. I don't want you to waste your money on stuff I/we can't use.

  • I'd love to talk to young people who've had stem cell transplants. If you know of any athletes or musicians that have been through STCs that would be ideal.

How this will work:

  1. Review the instructions for using the site.

  2. Sign up to provide an item. You will fill out a short form and provide your e-mail address.

  3. My mom, Marion Dry, or sister, Margot Boyer-Dry will follow up with you via e-mail to confirm that you're able to provide the item.

What we DON'T need:

  • COMMUNICATION: It can be a full-time job to update everyone about what's going on. While I so appreciate that you care and want to know what's going on, I'm unfortunately unable to update everyone on an individual basis. There's limited days and times where I feel well enough to do fun things and I'd like to focus on having fun! So please follow this blog for updates.

    • Please DO feel free to send me notes via email, facebook or send cards (these are particularly awesome). I love hearing from you.

  • Information about Cancer, research, stuff you find about cancer on the internet etc... I appreciate the sentiment, but I am being treated by world-class doctors at UCLA that specialize in Lymphoma and stem cell transplants. They are leading world experts. I don't need any more medical or homeopathic information at this point.

  • Candy & knickknacks - I have some dietary restrictions and I don't want you to waste money on stuff I won't/can't use (this is different from the first time, so thanks to all of you who sent these things before!)

    • As stated above, if you want to send/provide something I haven't registered for, that's great and I appreciate it! Just ask us first to make sure we can use it and you don't waste your $.

Most importantly, THANK YOU! I greatly appreciate your help, love and support.

Be Strong, Stay Positive!

Peace, love and happiness 

-JBD