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.