SO, you want to be in a Clinical Trial? (prt One)

I stepped into the shiny new train and eased into one of the comfy seats with lots of electrical plugs handy. I tried not to think too much about what was about to happen, because doing so brought tears. Not fearful tears, but tears of hope and tears of sadness. I was bound for Miami - 30 minutes by train - to begin a clinical trial to hopefully save my life and the lives of others diagnosed with Triple Negative Breast Cancer (TNBC).

Just the day before, ironically, I “celebrated” my 365th day cancer free. A birthday of sorts. Some women begin counting on the day of their diagnosis. Under the reasoning that we all become survivors the day we take on this fight. Others, like myself, prefer a more joyous date to memorialize - the date I was finally free of cancer. That date for me is July 24. The date of my double mastectomy. My surgeon found “residue cancer” within my tumor during surgery and removed it along with my boobs in one 4-hour operation. As a cancer patient, you hope for pCR (Pathological Complete Response) meaning there is no cancer left after chemo therapy. Approximately one-third of TNBC survivors receive pCR. I, however, was not among them. 

From the very moment of my diagnosis, I knew I wanted to be a part of finding a “cure”.  If this fucking disease was going to enter my body, I was going to fight like hell to kill it - for me and for anyone who would have the misfortune to follow me.

Finding a “cure” for cancer - all cancers - lies in the field of clinical trials. Basically, doctors and researchers think they may have discovered something, a drug, a test, a vaccine, but to find out if it helps or works they need humans to step up and offer their bodies to research. Many folks find themselves on clinical trials because nothing else it is working for them. They have metastatic cancer (stage IV) which at that point is incurable. They’ve tried all proven methods, drug, therapies, yet they continue to get sicker.  I, fortunately, am not in that position. I’m entering a clinical trial to hopefully keep my cancer from returning. Thus, helping others remain cancer free, and in doing so I’m willing to take on the risks of the unknown. Look, once you have stared down cancer, little else is as scary.

The train rolls into the bright and shiny new Miami station. This high-speed train has only been making this trip for a couple of months. I step out and make my way to the Sylvester Cancer Center, located at the University of Miami, where my clinical nurses are waiting for me.

To qualify for this clinical trial, or any clinical trial, you must pass a rigorous and extensive list of prerequisites. For this one, I qualified on my diagnosis of TNBC, having residue disease post chemo, and having ended all treatment within 365 days. I qualified on that last one because my treatment included an additional 18 weeks of “extra credit” chemo (Xeloda) because of having residue cancer. For me, my treatment ended December 31, 2017.

I also had to have blood and urine tests and somehow pass those, which I did. AND I also had to “prove” my cancer had not yet returned - or in the process, find out it had. To do this, I needed to have CT scans of my chest, abdomen, pelvis areas and a bone scan. Well, if you have been following along, you know by now of the “scan-iexty” that comes from having to chase down every little blip on a screen to prove it’s not cancer (or find out it is cancer), but instead a cyst, or other benign thing that everyone has, but you don’t know it, can’t feel it.  Three months of all that and I eventually passed that big and scary hurdle as well. Phew!

I am met in the lobby of the Center by no less than five clinical nurses, research assistants and various interns. They, along with my breast oncologist, will make up my team for the duration of the trial (more on that later). Together, we move as a pack down the narrow hallways, up an elevator, across the buildings, down an elevator to the CTU, the Clinical Trial Unit. -------------

Scan-xiety - Chasing after the unknown (Part Two)

So, where did I leave off. Oh, I remember. Back to DC to get a second scan of my chest because the first scan I had in February was because I was complaining of a cough and tightness. Well, that scan showed my lungs were clear, BUT something else funky. The lymph nodes under my clavicle that lit up the first scan in February have returned to the rightful sizes. All good. EXCEPT now the CT of my abdomen (which I got because I’m needing to prove I’m cancer free in order to qualify for a clinical trial – more on that later) shows a cyst – or something – on one of my kidneys. You have to be kidding me?! Ok, OK, OK…the oncologist gods have proven they are right about scanning!  I totally get it now!  NO SCANS.  The “cyst”, however, is NOT cancer, so everyone assures me.

I have started to inch myself back into the working world. Through luck, good timing and a fast rapport with a fellow White House staffer, I have found myself consulting part-time for a wonderful non-profit based in Fort Lauderdale focused on the elderly population in Broward County. I need to build up my concentration and stamina for an eight-hour day. Plus, I want to be sure what I do professionally for the remainder of my working life continues to uphold and is line with what I’ve been lucky to have done previously. It has to matter. I have to be making a difference in the world. Even a small portion of it like one county in one state.  I enjoy the work and the mission. For now, it’s fitting it nicely with my life.

Back in Fort Lauderdale, Liz and I traveled to Miami earlier this week to see one of two oncologists on my new “fuck cancer” team roster. Both women are top in their field and based out of world-renown Sylvester Cancer Center at the University of Miami.  The purpose of the visit is to review the results of the DC scans and to find out our next steps with regard to “qualifying” for the clinical trial (I promise, more on that later). It is also time for my wife and number one care-taker and chief advocate to ask her questions to the doctor about the clinical trial, and to voice her concerns about seeing her wife go through more chemo. Ugh, there’s that – more chemo – as a part of the clinical trial. But, I promise more on that later…First things first.

As I was told in DC, the scans are clear of cancer. However, the “cyst” on the kidney, while not disconcerting to anyone in the room of the five women medical professionals (it seems my new oncologist likes to travel with what she calls her entourage – U of M is a teaching hospital), we do need to figure out what it is. So, an MRI has been scheduled for later in the month. Forchristssake. AGAIN, another test to chase after a previous test result.  Oh, and I need a bone scan, too.  As it turns out, the part of proving you are cancer free is proving it hasn’t settled in the bones. So, I have to have a scan of my bones, too.  Oh, and if the bone scan finds any kind of arthritis, I will have to have an MRI to rule it out! Knowing that this 54-year old, previous catcher body surely something like that will turn up.  I scheduled the bone scan ahead of the MRI for my kidney hoping that if anything lights up in the bone scan, they can rule it out in the MRI. Fingers crossed my scheduling cleverness works out.

Personally, it was also one of the hardest days since being diagnosed with cancer.  A friend I met in an online support group for cancer survivors. Who was diagnosed with my breast cancer, Triple Negative, at the same time as me. Finished chemo the same time as me, had her surgery the same time as me.  Who I traveled to meet in person when Liz and I were upstate New York last fall as we were both struggling through the “extra credit” of Xeloda. Such a lovely, caring, YOUNG, strong woman, found out last night her cancer returned. In her lungs and her liver. I cried for hours. I cried for her. I cried for me. I am scared. For her. For me. For all of us with Cancer. And I am pissed. I hate Cancer. It’s so unfair. So unforgiving. So fucking unfair! 

I've heard people say, trying to be supportive, I suppose: "we all die sometime. Any of us could get hit by a bus at anytime. You have to just live your life". Yea, I get that. But you are blissfully unaware the bus is coming at you. We in "Club Cancer" are acutely aware there's like a gun at  our head. Maybe loaded. Maybe not. And every once in a while the trigger gets pulled. You hope to hell the gun's not loaded. Scans are like the trigger getting pulled.    

She told me she will fight. And I will continue to fight right beside her. We cannot do it alone. Give to a cancer organization today. Support me in my efforts to again raise funds for cancer support (more on this year’s “challenge” later). Volunteer to drive someone to chemo. Help us. Be there for us. Vote for us, as we ARE pre-existing conditions. Keep rooting for us!

Scan-xiety...It's a Thing (Part One)

I could have been nervous. I should have been nervous. I was headed to Washington DC a few weeks ago to repeat a test – CT scan of my chest - three months after my first scan in February showed “something not normal” in two of my lymph nodes under my clavicle. February, I had been complaining of a cough and of a tightness in my chest. A few times, I actually came close to asking Liz to take me to the ER (no joke) because I was having such breathing issues.

I was told by my oncologist if I should ever have “symptoms” that last a week or two, I should bring them to her attention. So, after a few weeks of feeling this as if I was either having a heart attack or my lungs were collapsing, I finally mentioned it to her. Previously, it should be known, I voiced my opposition to the “standard of care” given to breast cancer patients who just finished chemo.  That standard of care is basically composed of kicking you out of the nest that is constant attention and hands on by the medical team for six or so months while they inject poison into your system that makes your hair fall out (which turns out to be the least of your worries) and then telling you to “go live your life”.  Oh, and come back and see me every three months for blood work and a chat on how you’re feeling. AHHHH! Couldn’t they put me in a scanner, I replied? Couldn’t you shove me into an MRI machine and ENSURE my cancer hadn’t returned?  For crimeny sake, I did not know I had cancer the first time!  How the hell am I to know it’s come back?!?!

Anyway, she heard me (as it turns out, I’m not the first of her patients to have such a meltdown. I was assured most of us – apparently - have similar reactions), but she was staid fast on the “NO SCANS” sign she posted in her front window the day I graduated from chemotherapy, patted me on the head as she scooted me out the proverbial door.

So I complained.  And I explained these were real feelings. And I looked scared.  She heard me and agreed to CT my chest and figure it out. This was February of this year.  I had just finished my “extra curricular” rounds of chemo (Xeloda). Surely, some of that poison was still in my system, hunting down any stray cancer cells in my body.  Surely, cancer couldn’t have come back THAT soon? Yes. Yes, in fact, it could.

The “good news” was my lungs were clear as clear can be!  The “bad news” was they saw what appeared to be two slightly enlarged lymph nodes under my clavicle.  Ugh. They were too small to see in a PET Scan, too small to biopsy.  All that could be done was to WAIT three months or so and have another scan to see if they grew, or changed in anyway. Really?  That’s the answer? To wait?  Wait to see if they grow? I hate cancer! I just hate it. By the way, as soon as I knew my lungs were fine, my “symptoms (the coughing, the tightness, the feeling of needing to go to the ER) all just disappeared. Went away. Your mind is a powerful friend and/or foe…..more on that later.

Three months has past. Three months of waiting. Of pushing the anxiety and the fear down into some other compartment in my head. I started mediating regularly - like EVERY day. Which has helped a great deal. I needed a distraction – and a prescription of Xanax – to make it through this. Oh, so we moved. We sorted through 30 years of living our lives in DC, and we tossed out, sold, gave away almost everything! My crap went beyond 30 years as I discovered grade school report cards, high school Year Books, old catcher masks from a time well-remembered, and grade school report cards in my stash in the attic. We then piled our 12-year old vizsla into the back of the SUV and conjoiled a good friend to join us on the two-day, two-vehicle, totally uprooted drive to Fort Lauderdale.  That whole thing was distracting, I supposed.

Now, I’m back in DC. Back to the “bubble” of political upheaval, stress, traffic, congestion, yuck. Back to have another scan of my chest. Back to see if cancer has returned.  How wonderful.

So I should have been nervous.  “It” even has a name, scan-xiety. The fear of the scan. What it can tell you. Cancer has returned. You are now incurable. You are now stage four. (there are no more “stages”, BTW). You have metastatic cancer. So, sure all that can provoke anxiety. For sure. I should have been nervous. Scared out of my wits. Frightened and losing sleep. Remember, I wanted to be scanned A LOT when I finished chemo. I haggled with my oncologist about it. I wanted something to tell me I was cancer-free. I wanted something to look inside my body and tell me it had not returned to my liver, my lungs, my kidneys, my bones. What I didn’t know (but the doc was genius to) every scan turns up something. It may not be cancer, but nevertheless, you’ve now jumped down the rabbit hole of the “unidentified spot” and chasing after the truth (meaning additional tests to check out the previous tests) now commences.

I went alone to DC. My wife is busy keeping a roof over my head and my belly full.  I haven’t worked in almost a year now. We were grateful she could keep her job in DC and work remotely. This was key to our decision to move away from DC and the stress of living in the DC metro area. So I came back alone.  I went to my appointment alone.  I could have asked any of my friends to go with me and I know they all would have, but I didn’t.  I wanted to face this alone. I wanted to stare down my fear (this time) alone.  I felt confident and strong – regardless of the outcome. I knew – no matter the result – I’d be ok.

Off to the hospital I went. This is a VERY familiar place. Almost comforting to be there.  I traveled down the elevator to the ground floor where the Imaging Department of Sibley Hospital is located. I checked in and took a seat. All pretty standard. After all, I just went through these steps three months ago. All very familiar.  Then a nice gentlemen walked up to me, knelt down and hands me a bottle of some pre-mixed (berry favored) drink and tells me I’ll need to drink it… and there’s another one behind it.  It tastes ok. It’s tolerable. It’s berry favored.

Several minutes later, the kind woman who started my IV the first time comes out and ushers me back to the department. She pricked my finger to ensure my kidney levels are strong enough to handle the “contrast” that’s about to enter my body via the IV. It’s the contrast dye that will “light up” anything unusual in the CT scan.  The berry flavored drink will do the same in my abdomen.  You see, not only am I repeating the chest CT of a few months ago, I’m also attempting to qualify for a clinical trial in Miami. To be accepted, you have to show you have no evidence of cancer. Thus, additional CT scans of my abdomen and pelvis region were ordered.  Do it all at once, I asked…

My IV line in, she took me to the room with the big machine. It’s a tube, really. You lie down at the front end of it, covered in warm blankets. Told to put your arms above your head (not as easy for me these days), close my eyes, and the tech hooked up my IV to a machine that administers the contrast dye. “You will feel a sense of warmness, like you are peeing your pants. But you are not”…..hmmmm yes, I remember that.

The machine doesn’t make any sound as you simply slide in and out of it. Asked to hold your breath a few times.  Gratefully, it’s not like an MRI machine that beats and hums and whizzes at ear-splitting levels for 45 minutes. No, this is quite civilized. After about 5 minutes I’m done. Out of the machine (I didn’t even have to change into a gown) and headed out of the hospital. In two days I meet my DC-based oncologist for the results.  I drive a car- borrowed from a good friend - to the home of other good friends who agreed to put me up for the week, and we share a meal, a few drinks, and a few laughs. The next day, I'm lying in a chair, shirt off, getting the line work done for my chest tattoo. Hey, when time could be your enemy, you don't wait.  

To Be Continued……….