Breaking Promises....With Good Reason

I took my last chemo at 5:45 pm ET, August 15, 2018.  Or at least I HOPE it’s my last chemo. I have sworn to Liz I will never take another chemotherapy as long as I remain cancer free.  Seems reasonable to the “average” healthy person. But not so much to those of us living with cancer. Particularly, cancer patients like me who have no other known, proven alternative to fight their disease than to take chemotherapy.  Making that promise did not come easy.

If you have been following along with me on this journey with cancer, you know that I have known – from the day of my diagnosis – that I wanted to play a part of finding a cure. Discovering a “hope” that me and others like me could cling onto for even just a little while longer while modern medicine and research continued their brave and fascinating exploratory work in ridding this disease. The fact is, the advancement of cancer treatment is moving at such an accelerated pace, what was “standard care” for me just 18 months ago is changing for those undergoing treatment today. This is due in large part to the area of clinical trials. Stepping on my soapbox for a moment: It is not progressing fast enough, however. If you can, and when you can PLEASE give to cancer research. It may save my life. It may save yours. Thank you.

As you know, after my surgery in July of 2017, my oncologist attempted to qualify me for an ongoing study for the chemotherapy, Xeloda. I did not qualify for the study because of all things I didn’t have ENOUGH cancer left after the initial chemo treatments, but she and I agreed I would go on Xeloda and “shadow” the study because of its initial positive findings.  My family and friends had concerns about me taking on more chemotherapy and how my body would respond, and I said then it would be my last chemo as long as I was cancer free.  As it turns out less than a year later, Xeloda is now a “standard of care” post-surgery for most Triple Negative Breast Cancer patients who, like me, did not achieve pCR (Pathological Complete Response) to the initial rounds of chemotherapy.

My hardest fight against cancer has been mentally.  Thankfully, I was healthy and strong at my diagnosis. I didn’t have other health or mental issues that may have complicated my treatment or how my body handled chemotherapy. I didn’t miss a treatment due to low WBC counts, or require iron or blood transfusions, or hospitalizations that many undergoing chemo face. Sure, I experienced debilitating side effects during treatment, but much of that has settled down, gone away, or I’ve accepted as permanent. For me, the mental anguish of knowing – for a fact – that there was a pretty strong chance cancer could return – and if it returns, it is incurable - has been very difficult for me.

I have sought counseling, been a faithful attendee at group meetings, and I have focused more on being mindful and developed a love for meditation. All of which has helped get me through difficult and trying days – and nights. Yet, I have found myself less patient with the world. Who has the time to fart around when you can be changing the world for the better – right now? I have lost the ability to “wait it out” and to “let things take their course”. It’s made me cranky and stressed out at times. And it’s driven by the fact that I now value every minute of every day in a fashion few ever get the privilege to experience. There’s not a minute to waste. Do not put off today what you could do tomorrow. Tomorrow is not a given. But there’s also a life balance. I must work to regain my patience. It was something I valued myself having before cancer.

Ok, back to chasing a cure. As I mentioned, I promised my wife that after my “extra credit” rounds of Xeloda, I would no longer seek chemotherapy as long as I remained cancer free. Chemotherapy does awful things to your body. Some we know about, some we don’t. Hell, I could survive cancer and die from a weaken heart as a result of chemo years later. However, as someone living with cancer there exists a very delicate balance between living your life as “normally” as possible and getting to live your life for as long as possible. Cancer fucks with your mind in this regard. My friend, Crystal, was a strong, determined, healthy, young, cancer-free person. One day making plans to live a long and happy life with her fiancé. And dead 18 weeks later. Come on, now. Who could blame any of us living with cancer for how we feel? Enrolling in a clinical trial, for me, was how I could give back and give voice for those who have fought, and for those now fighting and hoping for an end to this disease. Whether or not it helps me personally, I know that I have contributed something to make a difference. I’m at peace with that. But for those who love me, it is scary to see me go through more chemotherapy. I understand that and I had every intention of honoring that. It just so happens that the clinical trial I enrolled in last month begins its first phase with – you guessed it – chemotherapy.

So yes, I broke my initial promise not to undertake more chemo. In my mind, I broke my promise for a good reason. This clinical trial is NOT studying the effects of more chemotherapy. It is a study on how the immune system can be activated, strengthened, and focused on searching out and killing cancer cells. This is the answer to finding the cure for cancer. I feel that deeply. It just so happens, this trial “shocks” the immune system with chemotherapy before introducing the immune system-boosting vaccine that is undergoing study. 

See? Perfectly understandable why I would break my promise. This is my last effort to contribute cancer-free to finding a cure for cancer. I am ok with that. And I hope to hell it works. With that, I took my last chemotherapy at 5:45 pm ET, Wednesday, August 15, 2018. Next up, my first vaccine scheduled for Tuesday, August 21^st. Please keep rooting for me. And Fuck Cancer.

SO, you want to be on a Clinical Trial (prt Three)

Before we move to Part Three of my clinical trial experience, I must say a BIG THANK YOU to everyone who responded to my blog post regarding the death of my friend, Crystal. The post enjoyed an overwhelming readership rate (over 2,000 folks read the piece as of today) and I received so much love and support from folks across the country. You helped me to move forward. And that's all I can do. Today is Crystal's service in upstate New York. To honor her and to "be her voice", I will continue to post my journey for as long as I am able in hopes it educates those yet to experience cancer first hand, and to provide a level of comfort to those of us who fight this disease daily. You are NOT alone. Your voice will NOT be silenced. Ever. Well, I was actually "muted" for a period of time for "being rude" on one FaceBook page and almost removed from another last week as a result of the url of my blog, but all's good now (Crystal would have loved the ruckus)...and that's for another post!!! Ha! So, here we go.......and thanks for continuing to follow my journey. (jjb)

Before the start of the trial, I am required to give 16 tubes of blood. These tubes go to the “sponsor”, the researchers behind the trial, to use as a base-line of my health as the weeks, months and years of the trial go forward.

I’m met in the lobby by my entourage of clinical nurses, research assistants, and interns. Together we meander through the maze of the Medical Center to the CTU (the University of Miami's Sylvester Center for Cancer "Clinical Trial Unit") for the blood draw. Luckily, I had been pounding back liquids for hours, on the train, etc to be well-hydrated in preparation. As I sit waiting for the lady to take me back behind the CTU door, I begin to cry. Not exactly sure why. I guess it’s the overwhelming sadness of even having to do this shit. I’m not so much scared of what’s to come, but I am sad is has to be this way.

The clinical trial has a bunch of rules, or “protocols” that must be followed EXACTLY. Remember, the 280 participants in this trial, like most trials, are scattered across the country and receiving treatment at various cancer centers and hospitals. Keeping a handle on how each of us individually follow the rules to ensure a defensible, clinical rigorous outcome most be nightmarish to develop. This trial is a double-blind, two arm study. That means participants are “randomized” into one of two “arms” or teams as I like to call them. Both teams will receive 28 days of chemotherapy.

Yep, I will have gone thru my fourth round of chemo by the end. As you can imagine, this did give me some pause. Chemo is bad for you. It may save your life, but in doing so, it harms you. Some of the effects are reversible, some simply are not. The extreme fatigue I battle every day is a direct result of chemo. I still cannot feel the ends of my thumbs. My hair turned grey. My joints ache. I have developed arthritis in my sternum which affects my left shoulder. I remain hopeful it will lessen as the months and years go by, but there’s no guarantee. Some survivors develop heart, kidney and even leukemia years down the road following chemo. It is bad shit. But it saved my life and to try and keep me alive, I have volunteered to take another round.

The chemo is cyclophosphamide and is in a pill form this time and thankfully, not given by IV. I do not have to have a medical port put in again. And I take a pill twice a day. One week on, one week off, for 28 days. I had cyclophosphamide during my initial round of chemotherapy. The combination known as “A/C’, was paired with Adriamycin or the “red devil”. Awful shit that if spilled, would literally burn a hole in the linoleum floor. I’m told the cyclophosphamide is of a lesser dosage than my previous round and the risk of losing my hair or developing severe nausea as before is unlikely. I guess we will see.

I was given a bottle of cyclophosphamide pills. A bottle of 100 - exactly 100 pills.  Now mind you, I only need 28 pills in total (2 pills per day for 7 days – one week on one week off for four weeks). Why would I be given 100 pills when I only need 28? Still a bit of a mystery to me. Perhaps it will reveal itself as we go along. I’ve been given a document. I’m told it’s an official document, i.e. don’t lose it, and on it I must record the time of day, each time I take a pill, as well as writing down any symptoms, issues, etc. I experience. If I drop a pill, I need to keep it – not throw it way – and return it along with the other 71 remaining pills – and the official document - at the end of the first 28 days. The rules are ridged but I get it. The researchers have to do what they can to ensure some sort of standard protocol for everyone on the trial. Good thing I’m not a natural rule breaker!!!

After the initial 28 days of chemo, the two teams split. Team One will receive an injection of the trial vaccine (TPIV200) and sargramostim, which is more commonly used to decrease the chance of infection in people who have acute myelogenous leukemia or in people who are undergoing blood stem cell transplants, or for people who are undergoing bone marrow transplants. It works by helping the body make more white blood cells. Team Two will only receive the sargramostim. This is the “control” group. So, at the very least BOTH Teams receive the initial course of chemo, followed by an immune system booster for the duration of the study. The vaccines for both teams happen every 28 days for the first six months and then once every six months for next 3 ½ years. It’s a loooooong study. Before getting the vaccine, I will need to give blood and urine for testing and whatnot. Because the trial is double-blind, the I won’t know which team I’m on and my doctors don’t know which team I’m on. Apparently, the only time this is revealed is if I should have some kind of reaction or otherwise become pretty sick and only then, the researchers will notify my doctor. I have faith and will continue to believe throughout this trial that I am a member of Team One - the Team receiving the vaccine.

So, there you have it. That’s my clinical trial. I took my first chemo pill at 8:05am, Thursday, July 27^th. So far, so good. #FuckCancer #KeepRooting4ME

For Crystal

Yesterday, breast cancer took the life of my friend.

We met online in a Facebook support group for Triple Negative Breast Cancer survivors. I immediately took to her and to her story and she to mine as were diagnosed with TNBC at the same time, January 2017. She lived in the Syracuse, NY area where my wife is from.

We followed each other’s journey, offering advice and support when we needed it, and generally staying in touch. I felt I had a partner through all this, someone who truly understood what I was going through and how I was feeling.  She was a nurse and had a nurse’s caregiving and nurturing side to her that made me feel heard and supported when we talked. She also liked MMA fighting and Las Vegas, where she and her fiancé managed to visit a few weeks ago. She was a well-round person for sure.

By all accounts she was kind, she was caring, she was brave, she was strong, and she was determined to live. She was 38 years old.

Last fall, we struggled through the “extra credit” chemo, Xeloda, together as neither of us were pCR (Pathological Complete Response) to the initial rounds of chemo. She struggled more than I with the side effects and decided to end her treatment a few weeks early. I understood, and she was at peace with her decision. She was ready to get on with living.

We met in person only once. I met her for coffee when Liz and I were in Syracuse visiting family in November 2017. We talked about our cancer journeys, but most importantly we talked about our lives. Our loves. And our hopes for the future.

She and I stayed in touch over the coming months. She was excited about plans to travel to Las Vegas in July with her fiancé. She loved spending time with her family, her dogs and her cats. She was organizing a fundraising drive for ovarian cancer. She was returning to her life.

June 19, she told me she was Stage IV. Her cancer had returned to her lungs, to her liver, to her bones. I couldn’t breathe. I was shocked. I was pissed. And I was scared. I reached out immediately to tell her to I was here for her. I’d be here for her. Anything she needed. She told me she was going to fight. I believed her.

She spoke of her pain. Her shoulder was excruciating. Her liver was insufferable at times. She and her fiancé were planning that trip to Las Vegas and she was bound and determined to go before her life-long treatment – more chemo – would begin.

She went on that trip to Vegas in early July, and from what I saw, while still in pain - particularly her liver - she thoroughly enjoyed herself.  She somehow pushed aside the terror of metastatic breast cancer for a few days and just lived. It makes me happy to know she had that time, in that place, with her love.

July 12, she had her medical port put back in. It was the signal that her treatment would soon begin. A signal she was prepared to fight for her life. A signal she was ready.

July 15, she posted for the last time. It says it all.  

July 21, I sent her a message that I was thinking about her. That she need not respond. Just know I am here and with her.  I had received many messages like this when going through chemo from friends and family. There was no pressure to respond, just to know. They gave me comfort that the strength of someone else just having me in their thoughts would carry me forward. I wanted that for her that day. She saw the message, but never responded. 

August 1, she passed away. The details of her final weeks are not clear to me. And I’m not sure they matter that much. Each of us have a common, yet separate journey with cancer. The disease affects us all similarly, yet a bit differently. What is important is she fought for her life. She wanted to live. She DID live. She was a good person while on this planet. She left an ever-lasting impression on me.

I am heartbroken for her family and her fiancé. I am angry and scared for myself and others with cancer. The disease never truly leaves you. The impact it has on you is life-changing. Somehow, we struggle and find a way to remain positive and brave, and live with cancer.

A wise woman said to me this morning in response to my telling her I was at a loss for what to do now, in the face of my friend’s passing. She said, “Be her voice.” I intend to do just that. Rest in Power and in Peace, my sweet friend. Fuck Cancer.