Christmas Message from Jerry

To the Join Jerry Family: It’s late. Santa is approaching. To help, we’ve filled the living room with gifts. Sam, Lindsey and Michael, ages 16, 14 and 12, say they know what the deal is. Michele and I play Santa anyway. I’m sure it’s just for the kids.On this Christmas, more than any other, I am thankful for the many blessings in my life, including my Join Jerry family. You helped me take a year of challenges and turn them into triumphs. You helped me laugh at bad news and embrace good news. You showed me even tough guys can use help. Your Relentless photos made me smile on most days and cry on others. After 2 ½ years of this, I occasionally find myself on the dark side; being sick and tired of waking up sick and tired. Then, without fail, someone says something via phone, email, text, FB, card or in person, that puts me back on the right track. Thanks. I know exactly how Lou Gherig felt on July 4, 1939. Merry Christmas to you and your families. Jerry

Relentless Santa

Coincidence?

I was at the bagel shop and the young man who was helping me had on a relentless band, and I held up my arm and showed him mine. I said "for my brother," and he said "for my sister," and I told him to come to this site because she was going to get a bone marrow transplant, and she did not know what to expect. So if you are the sister and you are reading this, welcome aboard and know that you are not alone. The transplant is documented in detail on Facebook, Join Jerry 2010. We would be glad to help any person or family get through this journey in any way we can.

Relentless

To be afflicted with a life-threatening illness is to feel a host of strong emotions, not the least of which is isolation. This is especially true of bone marrow transplant recipients, whose compromised immune systems often restrict contact from the outside world. My brother is a social, warm person who makes friends easily and holds on to friends for decades. Imagining him cut off from people is like imagining the family dog not coming up to say hello when its owner comes home after a long day.

Fortunately, my daughters--who are as fun loving as their uncle--understood the potential problem, far sooner than I. Armed with enthusiasm, hope, and knowledge of Facebook, they started a "Show us your Wrist" campaign, hoping to connect people to Jerry throughout his transplant journey. Since Jerry wears the NHL red “relentless” wristband, they encouraged others to wear one too--in a show of silent solidarity. And they asked people to post pictures of themselves wearing the wristband so Jerry would know he is not alone in his battle.

The response speaks to the generosity of the human spirit—and its creativity. The site has about 150 posted photos, and each week more come in. They are of individuals alone in their own backyards or of large groups, gathered at restaurants, delis, bars, Knights of Columbus meetings, SWAT sessions, museums, FBI gatherings, sporting events. There’s even one of a large group aboard the USS North Carolina battleship. The photos include people Jerry has known all his life as well as those he has never met—like an entire college swim team; the Georgetown tennis coach who has worn his red wristband so long it has turned pink; the attorney general of the United States, Eric Holder; and CBS Medical Correspondent, Jennifer Ashton. There are photos that are funny--like those of wristband-wearing trees, dogs, horses, fish and butterflies--and photos that are poignant, like those of the Duke Medical team who helped Jerry and his donor, our brother Anthony; those of our dad in his final days; and those of FBI agents on tours of duty. There are people doing relentless things while wearing the wristbands, like climbing mountains; running in half marathons, marathons and triathlons; and standing on their heads in yoga classes; as well as people just having fun: dancing on tables, swimming with dolphins, bowling, whitewater rafting, tailgating, water skiing, and drinking beer (Jerry’s beverage of choice). In fact, there’s even a bunch of photos of beer cans themselves. Wristbands have been found on teddy bears, Halloween decorations, children’s toys, mimes, contortionists, bikini-clad beauties, and there’s even a photo of the Rocky statue in Philly donning a wristband and a large statue south of the border thats's holding one in his massive hands.

Perhaps the most remarkable thing is that, somehow, wristbands have managed to travel around the country--as well as the world. Wristband-toting supporters have posted from DC, Kansas, Hawaii, California, New York, North Carolina, the Jersey shore, Chicago, Philly--as well as from Cairo, Colombia, Mexico, Kosovo, London, Germany, Italy, Paris, Stockholm, Afghanistan, Kabul, India, and Qatar.

The show of support has clearly helped Jerry in his recovery. I had a feeling that would happen. But what I didn’t realize is that Jerry would, in turn, help us, his family and friends and all of those who have followed his story. With grace and humor, he has demonstrated what it means to be relentless, and by doing so he makes us realize we are capable of conquering our own battles—whatever they may be.

In the weeks before Jerry’s transplant, dad’s health took a sudden turn. Jerry was enroute to see him but the hospital staff told us the delayed plane would certainly not arrive in time. Dad hung on for many hours longer than was expected, and the nurses were surprised. Jerry managed to arrive in time to say his goodbyes. Then quietly, just a few minutes after Jerry’s arrival, dad let go. Of the many things I recall of that night, one stands out: dad’s hand in Jerry’s, both of them wearing the red relentless wristband.

It is amazing how one word wrapped around a plastic band can unite us and give us strength we never knew we had.


"Relentless, adj: showing or promising no abatement of intensity, strength."

4 months: Is that all?

This has been a memorable four months. We lost dad two weeks before Jerry's transplant. Dad wanted to stay but knew it was his time. He made me promise to take care of Jerry, which is a little like promising to take care of a wild bull. I did my best, of course, but Jerry did all the work. His spirit and humor carried us all through. He inspired people from around the country and world to wear relentless bands and consider joining the bone marrow registry. Facebook photos of relentless band wearers have been inspiring, touching and entertaining to all of us. He is now actively involved in an effort that will result in reaching out to thousands of potential marrow donors across the country. The outpouring of love has helped him and all of us who love him. Thanks for your support along the way and for reading this blog. Here is the latest update from Jerry: "Well, it's been about 4 months and I am starting to feel much better. I am taking a lot less medicine (for now) and that has lifted the "fog" I have been in for awhile. I hope to replace the medicine with beer at some point. But then the whole fog thing will be back. Thanks for all the support, and laughs. Also, please consider registering as a potential bone marrow donor. Registering is easy and if contacted, you would be asked to save someone's life. Pretty cool. Donating marrow or stem cells is easy. If my brother can do it, anyone can do it. Thanks!"
Join the Registry - Be The Match Bone Marrow Registry
www.marrow.org

"New Talent"

One of my new talents is to give myself medicine everyday. Before June, if I was going to medicate myself, it usually involved several cold beers. Lately, that has meant hooking up to this handy pump and injecting some medicine with a funny name twice a day. Since you have all been with me during this, I thought I'd share some of the fun stuff with you :)

Day 100

To all 400 of you Join Jerry Crazies. Today is day 100. 100 days ago, someone said they wanted to poison me for 5 days, wipe out my immune system and then, here’s the funny part, take my brother’s marrow out of him and put it into me. If that’s not crazy enough, they said that my sister was going to be in charge and t...aking care of both of us. I said, OK, why not. I have been feeling pretty good the last few weeks. The medicine, and this process, makes me very tired sometimes, but every day is Saturday so it’s not a problem. I must tell you again that, even though fighting cancer is a little hassle, I have sucked every bit of fun and goodness out this. A lot of this is from you crazy people that have Joined Jerry, bought silly shirts, worn Relentless bands, attended a dinner, sent messages, shared Relentless photos and basically shared your Relentless spirit with me, making mine even more Relentlesser. Thank you for your support.

Jerry, checking in

It’s day 92. 92 days since I had my bone marrow wiped out and replaced by my brother's. (Who was the first one to try this crazy idea?) Everything is still going great. The only complaint I have lately is that I’m tired a lot. All the medicine I’m taking is probably more responsible for my fatigue than anything else. The docs are continuing to monitor me at least a couple times a week, making sure that my crazy brother’s marrow doesn’t mess up what used to be a very healthy body. My hair is starting to grow back. My kids say that it’s coming in a slightly different color. It looks ok to me. Thank you for all your support and all the great Relentless photos. I could not do this without all of you.

Relentless, indeed

Mark to Jerry: "Things going boom, bad guys with guns, and good guys with even bigger guns. Wish you were there pal."

Jerry to Mark: "It's been about 11 weeks so far. Sometimes I miss work, sometimes I don't. But I always miss the people. I work with such friendly people. Wish I was there today..."

My brother, still smiling

Feeling great today. But stopped in to see the doc and they hooked me up to this stupid machine. That's me today, 20-25 pounds lighter and no reason to shave this week! Thanks for messages and notes. You guys are great.

Message from Jerry: "A Long Process"

"Sorry for lying low, but it’s been hectic lately. Thanks again for all the support and for those of you that attended the dinner. I appreciate your emotional and financial support. It’s been an amazing and humbling experience. I’m feeling pretty good but I’m learning that this is ...a long process. Though I got out of Duke in record time, there is still a lot to do. I’ve had some stomach and other problems but we are working through them. I see the docs a lot, in Charlotte and at Duke, but it’s great to be at home and not a hotel. It’s been challenging here of late. My daughter Lindsey was in the hospital for a week with some bizarre infection last week. Of course, I was banned from the hospital, so I couldn’t visit. That was tough. On top of that, my son Michael was playing his first scrimmage at middle linebacker and broke his arm this weekend. He’s handling it well. Just another challenge. We laugh and smile everyday. Love to you all."

Join Jerry Video

The Knights of Columbus, Council 10852, from St Matthew Catholic Church in Charlotte, NC are relentless.

Join Jerry Dinner Pictures from my Camera

click on title above

Consider being a bone marrow donor

Jerry has been fortunate to have two siblings who are bone marrow matches. But other people are not so lucky. They rely on the bone marrow registry. Please consider signing up. Jerry tells me, "You can save a life and be home by dinner." Now that's something.

Relentless in Kabul, US embassy

Relentless in Bagram, Afghanistan

Wristband Mania Continues

Dr Jennifer Ashton, CBS Medical Correspondent, and Jerry's nieces

United and Relentless

Relentless in Kosovo

Relentless in London

Relentless Wristband at Pearl Harbor

Day 44, a weekend at home

Day 44 for me today. 44 days since I received my brother's stem cells (bone marrow). And I'm writing this from home and not the hotel I've been in since June 24th. Everything looks really good and I feel great. I have an appointment at Duke next week. Depending on some test results, I will either stay at Duke for ...about two more weeks or continue north to some crazy dinner at the Brownstone. A fellow patient asked me today how I was able to get "released" after only 44 days. I told him that I have a lot of relentless people pulling for me. Thank You from the bottom of my heart for all your support.

No words necessary

The Kindess of Strangers

It has been humbling for me to watch Jerry battle this disease and humbling to read letters of support from people around the country. Here is a note I received today, for instance:

"Although I don't know your brother personally, he is my brother too. I work for the same organization as Jerry but in our San Francisco office. I heard about Jerry's battle through his co-worker/friend and immediately felt compelled to assist in any way I could. Please relay on to Jerry that my wife and I are praying for him and for the rest of your family. If there is anything that we could do for you please do not hesitate to contact me."

My brother belongs to a truly remarkable "Band of brothers." I wish I could join...

Update from Jerry - Day 29

To all my friends, family and Join Jerry Crazies; Thanks for your continued support. It’s “Day 29” - 29 days since I got my brother’s stem cells and 36 days since we started the latest chapter of this adventure. Everything is going great. The doctors, nurses and staff at Duke are fantastic.

It still feels like “Groundhog Day.” Every day is the same. I go in to the clinic, they draw blood and I wait for the results. They then give me whatever meds I need that day. Lately, I haven’t needed any. My counts continue to rise, slowly, as hoped. My appetite is day to day and I’ve lost about 15 pounds. And still no abs
I’m working out at least every other day and feel really good. I tend to take a lot of naps during the day though, which is no different from when I was working. This whole Join Jerry thing and everyone’s Relentless spirit is amazing. As I’ve said before, I’ve gotten more good out of cancer than bad. That’s because of friends and family like you.

At the site of a relentless hero (in Sweden), Jim wears his wristband for Jerry

Relentless in Paris

The Far Travels of the Wristband

Jerry's friend wears his relentless wristband in the shadow of The Sphinx of Giza.

Relentless butterfly

Found this butterfly folded up in a puddle after a rain storm. It hardly looked alive. My daughter assembled a box for it, complete with relentless bracelet, and brought it into the house. After 4 hours, the butterfly finally dried up, and flew away. Left the relentless bracelet behind...

Update from Jerry

Hello all. Thanks for everyone's continued support. It's "Day 16." 16 days since I got my brother's stem cells (ie, bone marrow). That followed a somewhat "challenging" week. The last few days have been great though. Daily blood tests show that many of my counts are rising. Optimistically, this is my brother's stem cells finding a new home and getting to work. I've even been able to workout a little. I continue to go to Duke's bone marrow clinic daily. The doctor's and nurses there are great. I haven't had a beer in 23 days! That's the longest stretch since I was 16, and may be the reason for my morning nausea! Thanks again for all your support!

Band of Brothers

The FBI Charlotte SWAT Team and U.S. Attorney General, Eric Holder, show their Relentless support.

The "Relentless" Wristbands: A Story of Solidarity

Two years ago when Jerry was diagnosed with Non-Hodgkins Lymphoma, he kept the news largely to himself, planning to take on cancer like he does any other adversary: swiftly and with little fanfare. Unfortunately, cancer plays dirty and had other plans. As time went on, he started wearing a red wristband produced by the Leukemia and Lymphoma society (available at http://www.leukemia-lymphoma.org/all_toplevel.adp?item_id=4189.) The band captured, in one word, his attitude toward the disease: RELENTLESS. Slowly, he noticed others in his office start wearing the same band, a silent message of solidarity.

When his friends and family learned of Jerry's NHL earlier this year, we launched a website telling his story, JoinJerry2010.com, and then this blog to keep people updated. My daughters brought us into the world of Facebook, and they came up with the idea of asking people to post photos of themselves wearing the red bracelets or t-shirts made in Jerry's honor. The response has been awe-inspiring, boosting spirits far better than any medicine. Here are the latest batch of band wearers: SWAT Team practicing maritime skills, showing their relentless spirit and their good humor.

The Latest from Jerry

Today is "Day 13" according to the Cancer docs at the Bone Marrow Clinic. That means that it has been 13 days since I received my brother's stem cells (ie, bone marrow). The week prior to that was a little rough on everyone. Anthony was a trooper and endured painful shots and two long days of "harvesting." I was hospitalized and turned puking into a fun daily activity. Thankfully, my sister was there to keep it all together. We could not have done it without her. This last week has been good. My blood tests show that many of my numbers are rising, as expected. I feel good and actually worked out a little today. I understand that this is the quiet before the storm. We'll see. The only downside is that every day has become the same and somewhat boring. It's become Groundhog Day. But the Docs say boring is good. Thanks for the continued support, notes, emails, prayers, etc. It helps me poke cancer in the chest and say "is that all you got?" It's not me vs. all this. It is all of us vs. all this. How can we lose? Thanks again.

Big sister and little brother

A good sign

Duke's Bone Marrow Transplant Center, where I spent most of the last two weeks with Jerry, is located on Pratt Street. I think this is, quite literally, "a good sign."

Leaving for NJ

It's been a month since our dad passed away and two weeks since we started Jerry's transplant journey. If there is any truth to the quote "that which does not kill you makes you stronger," then our family is pretty tough right now. Toughest of all is my little brother, of course. I am in awe of his determination, good spirit, and good humor.

This is my last night in NC. It is hard to leave Jerry in the midst of procedures, but I know he is in good hands. There are many people who love him here and want to help. Despite the trying circumstances, I am glad I had the chance to spend time with both my brothers. It's not every day that adult siblings leave their lives behind and live together as they once did in childhood.

As I type, Jerry is answering mail and deciphering insurance papers. He at last feels well enough and sharp enough to concentrate. I am glad I did not have to leave when he was so sick with fever and had to be hospitalized. I am sure I could not have done that. Thanks to all my friends who have been sending me words of encouragement and support and all of Jerry's who have sent him their love and good wishes. It makes such a difference.

I am counting on Jerry and his supporters to keep me posted so I can write this blog. If I don't hear from anyone, I will just hop on a plane and come back. "That's not a threat; that's a promise." I sound like an honorary SWAT member. Maybe they'll make me one...

A scenic part of Duke U Med Center

On the way for chest x-rays today, we ran into this pretty part of the Duke U Medical Center

An unreliable narrator

How cute is my FBI brother holding this pink computer? He's trying to fix some technical issues on my mac. He is very reliable in helping people, but I have confirmed, over the past two weeks, what I have long suspected: Jerry is an unreliable narrator. A literary device, the unreliable narrator is not to be trusted because the information he provides is suspect, (think Holden Caulfield in Catcher in the Rye). Today, the nurse practitioner asked Jerry what he did yesterday, and he reported he took two walks and used light weights at the gym. Light weights he said, which are allowed. But when I pressed for him to provide details on what light weights meant to him, it turns out that they were not "light" as defined by the bone marrow team. Poor Jerry, can't wait for me to leave. I got his number now.

Many examples come to mind. When he went to Iraq, I was so worried. He called to tell me that he was in "the green zone," but I found out later that he was there at the time of his phone call to me but not the entire time. When I pressed him about this later, he said sheepishly that he was in the "green-ish" zone. When my mom called him last week while he was sick with fever and hives, his tone and demeanor were so uplifting that he could have won an Oscar telling her how great he felt.

With only a few days left in my stay, I am worried about the information I will get from my unreliable narrator of a brother, who goes through great lengths to make sure the people who love him do not worry. I hope the band of brothers who come to replace me in the weeks ahead will be good reporters.

The way they were

This is a photo of Jerry and our dad from the 1980s. Dad past away on September 8, not quite a month ago. In the last weeks of his life, he spoke often about Jerry and his recovery; being a religious man, Dad prayed for him daily. A father always worries about his children, he used to say. I like to think Dad is nearby; in fact, we are frequently reminded of him throughout our days here in Durham.

Day +6

Tony's stem cells are still about a week or so away from being part of Jerry's bone marrow system. In the meantime, Matt gives Jerry his daily cocktail of needed meds. Nausea is still lingering on, but that is about par for the course. Despite high temperatures in Durham and low hemoglobin in Jerry, we went for a brisk walk today, and Jerry visited the gym for a bit, careful to apply hand sanitizer as needed.

The good doctor visits

Dr Rizzieri stops by to check in with Jerry and provides some ideas on how to control nausea; he also recommends a nice walk later.

The daily routine

We have settled into a routine here. We wake up and drive to the Duke Bone Marrow Clinic. Here we don protective equipment, not the kind Jerry and his SWAT team are familiar with, but just as important. In these corridors, protection comes in the way of soap, masks, and gloves. Vitals are measured and then blood samples are taken and analyzed. Then Jerry gets a cocktail of IV meds based on the results. Hemoglobin, calcium, magnesium, platelets, potassium, antibiotics, and anti-nausea meds are some of the usual IV bags. This process can take us into the late afternoon or early evening. While the IV drips, Jerry usually listens to his ipod or checks his phone. Then we drive back to the hotel, where Jerry rests, and we try to figure out what he thinks his stomach will tolerate. Then Jerry either sleeps, channel surfs or checks the internet for messages from friends and family. The next day, we repeat the process. If temperature spikes, we have to call the hospital, and they decide if he has to go from outpatient to inpatient. This is what happened last week when he had a fever and hives and was admitted for four days.

In addition to having to endure the ailments that come with this process, a patient also has to put up with a feeling of isolation. I know Jerry misses his regular life, his family and friends, his work. But messages on this blog and on facebook (Join Jerry 2010) help him to feel connected. The outpouring of love has made a big difference. I told him that the support people show him is a testament to the kind of man he is. And he says, characteristically, it's a testament to the people themselves and the communities.

Thanks to all of you.

Responding to the labs

Conversation on the way to Duke:

Michele: I wonder what your blood sample will say you need today?
Jerry: I think it will say I need a Budweiser...

We are back at the clinic, waiting to see what the labs will report Jerry needs today. Yesterday, we were here about 8 hours because Jerry needed to get some platelets. Each day, the staff responds to the labs. Jerry is hoping that, someday, someone will discover that the cure to NHL is a cold beer. Until then, no beers until further notice. Not even on Independence Day....

Wall of Survivors

On the way to treatment, patients and family members walk past a wall that has photos of bone marrow transplant survivors. Here is a small portion of that wall. Using his gallows humor (as usual), Jerry said, on our first day, I guess they don't have a wall with the people who didn't make it....You have to have a sense of humor to get through this process. For sure.

A neutropenic diet

Jerry's wife Michele is reading about the neutropenic diet, which is for people with weakened immune systems. Jerry can't eat fresh fruits and vegetables, for instance. But, ironically, twinkies and ring dings pass the test. The diet unnerves me a little, reminding me of Blanche in a Streetcar Named Desire, who dreamed of dying from an "unwashed grape." Unwashed grapes can do Jerry in too. The Duke Med manual explains it well. He is very susceptible to bacteria at this point.

We are at the clinic this morning, as is the routine. Jerry's blood is analyzed and then he receives the IV meds he needs. Today, he needs some platelets, calcium, potassium. He is still on the antibiotics to prevent a recurrence of the fever he had earlier this week. Has it only been a week? Feels like forever. The nausea has subsided, mercifully, and Jerry was able to have a good breakfast, at last.

I think we may be in the quiet before the storm. Jerry said his good friend Kenny, a doctor, told him that the real test happens in about two weeks when Jerry's bone marrow starts to accept Anthony's. Fortunately, Kenny will be visiting at about that time. Knowing what I do of Kenny, he probably timed his trip so he could be around for that.

A Better Day

Nurse Markita responds to Jerry's sense of humor with some fun of her own. The nausea has subsided today so Jerry is more light-hearted. The people at Duke Medical are both competent and kind.

It is lovely weather here in North Carolina; much of the oppressive heat is gone. We are thinking of taking a short walk when the sun goes down. I mean only a short walk. The challenge for Jerry (and those who want to help in his recovery) is to make sure he doesn't overdo things....Like lift weights after a chemo session while enduring a 102 fever. You know, "little" things like that...

10 million stem cells

Nurse Carolyn makes sure that Jerry gets every last stem cell that Anthony donated. 5 million yesterday. 5 million today. And she does it while wearing a relentless bracelet.

Anthony returns home to NJ

We are back at the Bone Marrow Stem Cell Transplant clinic this morning. Anthony left earlier on a plane back to New Jersey, where he will return to his usual responsibilities of home, work, family. He leaves behind another 5 million stem cells, which Jerry will receive in a few hours. We will miss Anthony's abundant patience, a quality that both Jerry and I tend to lack. It takes a lot of patience to be on this journey. Courage, determination, and faith are the more obvious prerequisites, and Jerry has these in abundance. But it's patience that helps you endure the waiting--waiting for doctors, procedures and your body to heal. And it's patience that allows you to put your life on hold and attend to, well, your life. Our dad, who had to endure hospital stays of his own, resigned himself to this fact later in life. "It takes patience to be a patient," he would say. Since Italian was his native language, he was proud of his play on words.

Jerry is resting comfortably now, having had to endure the usual headaches and nausea that accompany this process. Anthony's stem cells are safely stored away until Jerry's IV of pre-medications is completed. Thanks for all the messages of support and thanks to all of our friends and family who are watching over our loved ones back home, filling in for us as necessary. I would say thanks to Anthony but he would only shrug me off. "Thanks, bro" was all Jerry said to him as Anthony was leaving this morning. And that's all that is needed between brothers.

Transplant part one

Around 1:00 today, after a morning of preparatory drugs and evaluations, Jerry received the stem cells that Anthony donated yesterday. Anthony donated more today, which Jerry will get tomorrow. It took about 6 hours to collect the cells from Anthony. Jerry received them in just one hour. One of the nurse practitioners said that in the next weeks, Anthony's bone marrow will begin to take over Jerry's. Until then, Jerry has virtually no immune system, so I definitely can't hug him, although I thought I saw the boys exchange a pretty hearty high five today after the transplant. And it seems they called each other "bro" an awful lot, too.I started to feel left out, but then they called me "mom," and I felt oddly comforted.

We are relaxing now, glad that the awful chemo days are behind us. I think dad would have been proud that we all hung in there for each other.

Getting Ready

Nurse Practitioner Jill checks Jerry's vitals in preparation for receiving stem cells. Anthony has another day of harvesting his cells ahead. Both my boys are in the bone marrow clinic today, just a hallway apart from each other. All's well.

Nurse Jeannie and Patient Jerry

Thanks to Nurse Jeannie, who helped Jerry conquer fever, chills, hives, hiccups, nausea, and other associated Campath reactions. She also makes a great chocolate shake. And now she wears a relentless bracelet too.

The Magic Apheresis Machine

This machine takes Anthony's blood and removes the stem cells for Jerry's use tomorrow...

Donating stem cells

My Sleeping Brothers

Day 5 at Duke, mid-day. Both "boys" sleeping comfortably as I type. Jerry is on his last day of super-charged chemo and Anthony is hooked up to the apheresis machine that is extracting stem cells from his blood. Today, I really do feel like I deserve being called mom. I have spent the day so far walking between Jerry in the hospital and Tony at the clinic. Campath gave Jerry a few more inconveniences to deal with, nonstop hiccups for instance and stomach woes. He regularly curses out the iv of drugs but appreciates all the nurses.

They are amazing here. What a place. The bone marrow stem cell unit is in a special wing. You need to get through three sets of double doors and a reception area where the protocol includes hand washing and mask-donning. The air in the rooms is continuously circulated too. Every once in a while, I get the urge to hug Jerry but I am afraid I am not up to the standards.

Transplant begins tomorrow. What would a Jerry with Tony cells be like, I wonder? Those of you who know both of them know why I'm chuckling at the thought...

Fever, and Chills, and Hives, oh my

Jerry hates campath, the drug that gave him fever and chills and hives. We learned all these symptoms are fairly common with the chemo regime he is on. He is spending another day at the hospital (rather than the clinic). But he was fever free when we left him, and apparently tonight--after a breathing treatment and chest xrays--he walked across the hall to the exercise room and sent us a photo with some light weights. If we can figure out how to post photos, we will. No surprise, he remains relentless; dad would have been proud.

Also no surprise, Jerry is a favorite of the hospital staff. One nurse even personally made him a milk shake. Tomorrow, Anthony gets his last shot for stem cell generation and then undergoes the 6-hour process of harvesting the stem cells, which will be transplanted to Jerry on Wednesday. Thanks for all your messages. When he's awake, Jerry reads them or we tell him about them. He continually says how lucky he is to have such a support network.

A nasty drug

In the last 24 hours, the chemo drugs are proving to be as nasty as their reputation suggests. Jerry had a reaction to one of them and ran a 102 fever for the last 12 hours. He is quiet, which means that he is not happy. The tv is on but he is mostly in and out of sleep. When he wakes up, he just looks over and smiles to me as if to say, "you still here"? The nurses keep telling me how pleasant he is, but I know he is really annoyed at the drug causing the trouble....We have moved from the clinic to the hospital, but I am sure that is a temporary step and that he will be better soon.

So Far So Good

Yesterday at Duke, Jerry had some procedures and Tony had his two shots of the day to help grow his stem cells. Today, Jerry is having all day chemo, and Anthony is continuing with his shots. We are in a special bone marrow stem cell wing of the hospital. It is very comfortable, with a family lounge and a good cafeteria across the street. Despite the 99 degree temps, Tony and I regularly make the trek for hot coffee. As I type, Jerry is having chemo and resting comfortably, no doubt dreaming of drinking beer (a now forbidden beverage) back at home.

As you would expect, there are lots of other patients and family members walking around the halls. We all seem to share the same knowing glances, and it starts to feel comfortable here rather quickly. Except for all the "ya all"s that we hear so often. That will take time to get used to. We're not in Kansas anymore, Toto.

On Our Way

Important Weeks Ahead

We are coming up to some important weeks ahead, and I am trying not to worry. It is good to know so many people are sending love and support. So many that it's humbling. Our friend Michael, who is much more tech savvy than I, installed a stat counter on this blog when we first introduced it. It's hard to believe this page has been accessed more than 1,000 times.

My new mantra

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."

Matthew 6:34

Join Jerry Dinner: August 22

We have the details for the Join Jerry dinner, and we hope you all can come.

We are so grateful to friends and family who have handled all the plans for us while we were taking care of our beloved Papa. The date is August 22, 6:00 pm, at the Brownstone. 351 West Broadway, Paterson, NJ. Family style dinner. DJ. Unlimited beer, wine, soda! That's right, unlimited...

$65 per ticket before August 16. $75 after. To purchase tickets, please send checks to Diane Makoujy, 9 Columbus Ave., Totowa, NJ 07512.

xoxo

Arrangements for Papa

http://festamemorial.com/obituary_view/73832

Good bye, Papa

Our beloved father, Damiano Senatore, passed away. He was a devoted family man, and I miss his quiet strength and boundless love already. Throughout his hospital stay, Dad wore his relentless bracelet for his son. Jerry now wears it in dad's honor. Relentless, the both of them.

Mike and Kenny

We have two new committee members for the Join Jerry Dinner, Jerry's good buddies Mike Nicusanti and Kenny Cooke. They are going to help with the planning. Jerry's going to wish he could come to this...

Save the Date: August 22 Join Jerry Dinner

Jerry's godmother, Aunt Connie, is organizing a Join Jerry Dinner event to be held on August 22 at the Brownstone in Paterson, NJ (a familiar site to those of you who are fans of the "Housewives of NJ"). We have set up a committee to help her in the planning: Diane, Anna, Ro, Lu and me. I don't know what I'm doing, but I am being led by people who do! Thank God. Save the date! We hope it will be a PV reunion of sorts, as well as a family reunion, a friend reunion, and just a fun way to support Jerry. (Note to cohorts of Jerry: yes, there will be beer.) More info to follow.

Excerpt from a Text Convo

Me: Heard you sent mom flowers for Mother's Day. You are a show off.

Jerry: No, sending flowers makes me a suck up. Beating cancer will make me a show off.

Me: Fine then go show off ...

T-shirts and wristbands

Thanks to everyone for the t-shirt orders. I ran out of a few sizes and placed a new order, which will arrive on Saturday. I'll ship them out right after that. The red relentless bracelets are showing up everywhere I look. They are available at the Leukemia and Lymphoma Society web site and support research for a cure.
http://www.leukemia.org/all_toplevel.adp?item_id=4189

Hoyas join Jerry

I went to a U Conn vs Georgetown tennis match recently. It was a tough match, and I was concentrating on the play when I noticed one of the Gtown girls, Vicky, was wearing a red "relentless" bracelet, the same one pictured on our JoinJerry2010 site and the one that Jerry has been wearing. I looked around and noticed that Vicky's doubles partner that day, Elizabeth, wore a bracelet too. Then I scanned all the Gtown girls, those on the court and those watching. Everyone had a bracelet. I was moved and mentioned this to Michelle, who sported her own bracelet and then asked me look at the Gtown coach. He had one too. So did some of the fans in the crowd who were watching and many of the swimmers who I saw later in the day at a banquet. Many of these athletes don't know Jerry personally but are moved by his story. Hoya Saxa.

Happy Birthday, Jer

Carpe Diem....xoxo

Facebook, wow

After Kristen set up the Join Jerry page on Facebook, she invited all her Facebook friends, one of whom is her godfather, Uncle Jerry. She apologized for not letting him know sooner of her plans. (She knew he'd understand; they are both relentless.) He responded by posting the story of his past two years battling cancer. To date, there are more than 90 Join Jerry fans on Facebook, many of whom are friends of Kristen and her sister Michelle. Recently, I have recognized the names of Jerry's friends and neighbors too. It's been an amazing week....

We're on Facebook

We heard from friends who thought we should be on Facebook. Kristen set us up about midnight last night; by the time I woke up this morning, Join Jerry 2010 already had 22 FB friends. Check it out.

T-shirts

The first batch of "be relentless" t-shirts were sent out this week; they crossed the country from NY and NJ to Colorado and California. It's been heart-warming reconnecting with people Jerry, Anthony and I have known over the years. Original fund-raising ideas in keeping with Jerry's "carpe diem" philosophy of life have come in too, including creative uses for t-shirts from overzealous college girls, a belly-dancing cocktail party, and t-shirts with new slogans. I'll keep you posted.

Small world

We received well wishes and support from all over the last few days: NC, NJ, Ohio, Illinois, Colorado, Washington DC, and even Italy. The internet makes the world pretty small. Thanks to everyone...xoxo

Time warp

Football warriors

Thanks to Kenny for this photo from long ago. That's not Jerry's son in the first row, but Jerry himself. Who would have guessed that this motley crew would produce such fine men? Kenny himself is an accomplished doctor. In fact, he has a long impressive title: "Ohio Eminent Scholar and Leonard C Hanna Professor in Stem Cell and Regenerative Medicine." How fortunate for Jerry that his good friend would end up being an expert in bone marrow transplants. I'm not sure who is who in this photo anymore. Maybe Kenny can supply the names. I recognize the faces. The years went by so quickly.

Our web page is live

http://www.joinjerry2010.com/

We did it. The web page works. Special thanks to Gail and Gary who designed the site, to Kristen who edited it (and found a grammatical error, gulp), to Luanne who recommended we "twitter," to Michelle who figured out what she meant and set us up, to Sandra who provided encouragement, to Pat (alias Boom Boom) and Julie who keep my spirits up no matter what the issue, to Barry who I never met but guided me somehow, and most of all to Jerry, who trusted me to tell his story my way (via Thoreau and Puccini). I am sure he would have preferred that Liam Neeson quote he's so fond of...It took a village.

Twitter Account

We recently started a Twitter account for JoinJerry 2010! If you want to follow us, here is our twitter account: https://twitter.com/joinjerry2010

Thanks for joining Jerry

If you're reading this blog, you are here because you know Jerry and his need for a bone marrow transplant. At this point, we don't know the exact date of the procedure, but it will definitely be this spring. Anthony, Jerry's older brother, and I (his much, much younger sister) are both matches (how great is that), and the people at Duke Medical are trying to figure out which one of us is the best fit for Jerry. Thanks for supporting him and the whole family. Feel free to leave him messages. At some point, he will be in isolation for a while so I'm sure the blog will be a good distraction and a good way to keep in touch. We are in the process of compiling a website. Go to joinjerry2010.com.