The Group

Every Wednesday evening since we moved to Fort Lauderdale I’ve found myself in a gorgeous, reclaimed “clubhouse” on the Tarpon River with peacocks strutting in the front yard. Sitting in a room with whomever decided to spend their Wednesday evening with me.  I never know who is going to show. Sometimes there are three of us, sometimes there are 20 of us. “Us”. Folks living with Cancer.  All kinds of cancer.  All kinds of stages. From the newly diagnosed to those whom the medical world has given up on. Old. Young. Women. Men. Gender nonconforming. White. Black. Hispanic. Asian. You get the picture.
 

Every week, each night, the 90 minutes we spend together is driven by what’s on our minds. Questions about treatment, how to ask your doctor questions, fear of re-occurrence, healthcare issues, the power of medical Cannabis.  Anything and everything is on the table. Regardless of whether it’s related to our cancer. We do our best to voice our truths and our lives, however refraining from and politics and religion. But every now and then anger at God, or whatever your higher being may be, and or at the current Administration can creep in. Listen, it is an honest conversation. What is most important, though, is we are free to show our fears, our hopes, and our dreams with others who share them with us as a result of our shared circumstance. Our shared relationship with cancer. No alarming the family and friends. No judging. 

Many times, in group dynamics you have a cast of characters. The person who dominates the discussion. Maybe it’s his first group meeting and has been bottling up stuff for some time. Maybe lives alone (or feels alone) and yearns for companionship of others. Others who “understand”.  But I swear can yammer on and on and on.  I’ve grown to be much more patient with this type of human. Before cancer, I would have told him he was being rude and should allow others to talk. Or I may have left the group altogether never to return instead of speaking out. Not now. Now, I listen. I take a deep breath and clear out the clutter in my head and I listen. I smile when he glances my way to encourage him to keep talking. As an acknowledgement I understand where he is coming from. As it turns out, if I really “listen”, I realize I share his fears, his frustrations, his “but I was never sick before this happened”. We just have different ways of expressing them.

Of course, there’s the curmudgeon. She just doesn’t seem to like people. Hates her circumstance prior to cancer and now, well, she’s just unbearable. Doesn’t have a positive thing to say to anyone or about anything. But for some reason she shows up to group. It seems she stills needs the warmth of human companionship. The comfort of understanding folk who listen to her regardless of her defensive bark. I, too, relate to this person. I am angry. Hell, I’m pissed when I let myself go there. I had a wonderful, blessed, existence before cancer. And yet, I can get right down in the muck in the blink of an eye. If I let myself. I rarely do that though. For me, it’s not a “why me?” thing. I don’t feel badly for myself and don’t want others to feel badly for me. Just want people to support me. Just be there for me. And so, me and the curmudgeon, we are there for each other, we co-exist and relate to each other nicely.

Sadly, he just celebrated his retirement only to find out a month later he has cancer. Or she lost her job just a month prior to receiving her diagnosis. She's had to sell her home to pay for her treatments, and now lives in her car. No health insurance, little hope. Yet she comes to group. We share our resources and our hope. 

And there’s ALWAYS someone who has had their road with cancer way bumpier and twisted than anything you’re driving on. She was diagnosed with lymphoma at 22, thrived and had an awesome family  - an awesome husband she is still married to and a wonderful, caring son who is an addict and fearful of relapsing without his mother. And her biggest fear is he will relapse when she dies. Later in life, she was diagnosed with breast cancer that has since spread to her lungs, her liver, her bones. The medical community gave up on her years ago. Yet, she’s still here. Thriving the only way she knows how. Smiling, smoking, selling everything “unimportant” and traveling the world with her husband, eating whatever she wants. She’s made her peace with her God. She has picked out her burial plot (including a seating bench for visitors) under a majestic tree she noticed while driving by. And yet she’s scared to die. At the end of every meeting I make a point to hug her and to tell her she’s wonderful. Every meeting, I worry may be her last. I want her to know I appreciate her and her contribution to my healing every Wednesday evening. Sadly, I have not seen her in weeks.....

This group of somewhat dysfunctional, wide ranging individuals has become my blanket.  They “get me” in my new normal. They have taught me patience with the human condition. While giving me a mirror to what may lie ahead of me, they bring me focus on the here and now. From the frighten, confused faces of those recently diagnosed to the exhausted faces of those staring down end-of-life circumstances. I hope I give as much as I get from these folks. Giving and receiving compassion and empathy from total strangers - there's much power in that. 

My family and friends want desperately for things to be as they were BC (before cancer). I’d like that too. However, after having examined close up just how fragile life is coupled with having your body fail you in such a tragic way changes you. Forever. In this group, I can confide my fears, worries, share my coping skills and pain to total strangers who may know me better in some ways than do most folks in my life.

Outside the group, I try and focus on the positive changes cancer has brought me. How much sharper the sunrises are, how beautiful the sound of birds in the morning stillness, how the smell of a flower brings such delight. My grandma Arlene lived this kind of life. She lived to be 94, and she understood how to live for the moment. I’ve since learned this joy through cancer.

I hope to live to be 94.

If I can from time to time wrap myself in the caring and fellowship of others fighting this disease, I  am convinced my remaining years will be brighter, clearer, and more compassionate and meaningful than my first 55.
(a birthday wish. happy birthday to me.)
 #KeepRooting4Me #FuckCancer

My Recliner

As I sit here in a recliner meant for clinical trial patients, in a room meant for those grasping at anything to make it just one more week, one more month, I think back on my last two years.

I was told in January of 2017 I had cancer. I spent the next 12 months surrounded by hospitals, oncologists, nurses, IV bags full of chemo, plastic surgeons, oncology surgeons, pills for nausea, pills for pain, pills to reduce the side effects of pills. I slept thru 2017 and my wife did everything else. This past year – 2018 – spent outside of the “chemo bubble” has been full of anxiety, pain, apprehensiveness, anger, and yet pure joy.

Today, I’ve completed “phase seven” of my 3-year clinical trial. And with it, I again must break free of a routine that has become comforting and comfortable. I know the nurses. They know me. I can find myself around the Sylvester Cancer Center, housed on the campus of the University of Miami Hospital, with my eyes closed (not really but it is impressive). I found a sense of peace knowing I’d return every 28 days to give blood, pee in a cup, see my oncologist, be deemed “healthy”, and receive my trial vaccine. I felt as if I were moving forward with each visit. I felt I just might be ok after all.

Beginning with the eighth phase and for the next two and a half years, my 28-day routine in this trial extends to once every six months.Three months before I see my oncologist for a "routine" visit. 

I again feel lost and anxious. Of the unknown. What is going to happen to me? Will I be OK in six months? Will I be too sick to walk these halls on my own the next time I visit? Oh, how I hate that this has happened to me.

 
I sit in the recliner, my feet up and under a warm blanket waiting for my vaccine. I past the time laughing with the nurses, smile knowingly at the others sitting in their own recliners fighting this horrid disease, hold my head high and breathe deeply.  I’m a proud survivor. Yet I’m scared, doubtful and terrified. And so it is. My life. Moving onward. But never to be as it was.

#KeepRooting4Me #FuckCancer

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.