Onward!

I. Am. Cancer. Free. 

Like the sound of those words. As of my surgery on July 24th, I no longer have cancer.

Although, it could return (and if you have been following along closely I apologize for being repetitive) as I have triple negative breast cancer (TNBC). The most aggressive all breast cancers. According to Contemporary Oncology, about 34 percent of women with triple negative breast cancer experience a distant recurrence with the average time of relapse being 2.6 years. According to BreastCancer.org, the five year survival rate for TNBC is around 77 percent versus 93 percent for other breast cancer types.

 

But enough of the scary news. Right now I'm now cancer free. And from a medical "standard of care" definition, I have completed my cancer treatment. I'm done.

But.... I'm not. 

You see from the very beginning of this fight, I told Liz I would go beyond my treatment (regardless of the outcome) and enroll in a clinical trial. Whether or not the trial helped me, I wanted to play a part of helping women who will come behind me in this fight. To do that, you can become a participant in a clinical trial. You volunteer to join the medical professionals who are giving their careers to finding a cure for you and others like you. Clinical trials are specific- meaning the participants selected for any trial must meet rigorous characteristics and protocols. 

Post-surgery, my oncologist was excited about a clinical trial currently being run out of the National Institutes of Health (by the way, people who work there are super heroes and literally life savers). The results of my surgery discovered my tumor had shrunk 90%. And my entire medical team was thrilled about those results. Me, being of type-A over achiever ilk, was looking for 100% (referred to in the medical world as "complete pathological response" or "pCR"). According to the most recent research, complete pathologic response rate of approximately 15%-18% is seen among patients with all breast cancers, and the pathologic response rate in patients with triple-negative disease is quite a bit higher, maybe as high as 30-35%. This is in part because triple negative breast cancer reacts well to chemotherapy. But I got a 90 percent response and I will take every percentage . 

To qualify for this specific clinical trial, one had to have a certain percentage of "residue disease" or cancer left after chemotherapy but before surgery. My oncologist called a few days post surgery to give me "good news and bad news". The good news being obviously a 90 percentage shrinkage is terrific, but the bad news was to qualify for this trial, one needed a higher percentage of residue disease before surgery. That's ok. I didn't want to "qualify" for that trial, anyhow! So at the moment, there are no trials out there that I meet the criteria for. 

However, a clinical trial presented at the 2015 San Antonio Breast Cancer Symposium on December 2015, known as CREATE-X, was actually stopped early, in 2015 when it became clear that the drug, Xeloda had benefits for women with triple negative cancer with residue disease post surgery. 

While this drug has yet to become part of the "standard of care" for cancer patients like myself, my oncologist, Liz, and I agreed that given what we know about my disease and my willingness to continue care, I would start yet another round of chemotherapy - this time using Xeloda - to give me the best chance known of survival. I suspect I will begin this next round in the coming week. We are looking at 18-24 weeks on this drug, if I can tolerate the side effects. It is a pill that I will take at home, twice a day for two weeks and have one week off for 6-8 rounds. I will be closely monitored by my medical team while I am on the chemo as before. I look at it as my "maintenance drug". Women who have other forms of breast cancer take medication 5, 10, and 15 years post original diagnosis to keep cancer from reoccurring. My type of cancer has no known medication so I will throw another chemo drug at it, continue to look for clinic trials that I qualify for, and remain positive and to lean on my wife, and our village of family and friends to get us through. So keep rooting for me.  Keep Liz in your thoughts (and occasional email).

 

And so I move onward. Cancer free and determined to stay that way. Oh and boob-less. 

Cheers!!!

Fight Like A Girl

A little girl joined the world on July 24^th. She may have been one of some 250,000 babies born in July, but this baby is special. She and I will share an amazing bond to thrive for existence on this earth that she may never fully realize – neither may I – for the rest of our lives. 

You see, her parents are neighbors. And when I started chemo in February of this year, Liz felt better about me driving to work if someone would ride with me. Liz – for those of you who are not aware – rides her bike and or runs into work each day. It’s something she cares deeply about, it’s good for her emotional and physical health and she has been doing it for years. Her life had been uprooted enough already with all this cancer-related stuff and I did not want her to lose this piece of herself. So I would continue to drive to work, but we would ask my work colleague – and neighbor – if he would drive into work with me every day.   Mike agreed. He proved to be a wonderful commuting partner. We share a love of Africa and travel and conversation was easy.  Shortly thereafter, he announced he and his wife Kelly were pregnant and Kelly became a regular commuter, too. I truly enjoyed our rides to and from work. I found myself less stressed about traffic and the stupidity of fellow drivers. We were never at a loss of conversation. The dad-to-be and I shared many conversations about his newly found awareness of what it takes to be female in this world even before his baby girl was born. She would have to be smarter, stronger, tougher. Hearing how their pregnancy was progressing and how they as a young couple were readying themselves for the arrival of their first born was awesome and entertaining.

As I struggled through my 20 weeks of chemotherapy, and dealing with my fears for my life, listening to - and watching – their baby (shortly determined to be a girl) thrive for her life was a welcomed distraction – and amazing to see firsthand. Each day it seemed Kelly was getting bigger and the baby girl was getting more and more active. You knew she was a fighter.  We were both fighters. Each of us struggling to get to the next day, to participate in the world, to live. There were many times I caught myself from just losing it in the car on I395 at the thought of how juxtaposed our lives were at that point in time. There was this young couple discussing how they were checking off a long list of “honey to dos” to be ready for her arrival: painting the nursery, installing doors on open cabinet storage areas, etc., while Liz and I were focused on scheduling doctor appointments, handling the shitty side effects of chemo and just trying to hold on and holding it together until the next day. 

 

Her nursery was ready, her dog, Tank, was ready, her parents were ready, she was ready. She was due to enter the world July 31. If she arrived early and before my last day in the office before my surgery, the plan would be for me to get Mike and Kelly to their house where they’d pick up the “go bags” and be on their way to the hospital. I was overjoyed to share in the plan to help bring her into this world. But alas, July 21 came and went and she was not yet ready to make her entrance. 

My surgery, scheduled for 7:30am on Monday July 24^th consumed me that weekend. It’s a lot to take in: waking up to no boobs was the slightest of my worries. How much cancer survived the 20-week chemotherapy? Had cancer gotten into my lymph nodes – your body’s highway to anywhere and everywhere. Ugh.

In my room, post-surgery (and before I ordered mac n cheese and carrot cake to celebrate), Liz looks at her phone and gasps. What?! I say. What’s wrong? (what could possibly wrong?). Nothing, Liz replied. She had let Mike and Kelly know I was out of surgery and they in turn sent a picture of the young parents and their little girl, Winny. She had entered this world about the same time I became cancer free. For so many reasons, she will be forever in my thoughts each year at this time. You can bet I will be sending her a birthday card to honor and celebrate her every year in this world as well. Happy Birthday to us both. #Onward

Now That They Are Gone

I admit. I was a bit apprehensive Monday morning as we sat in the pre-op area of Sibley Hospital. With my IV in, numerous consent forms signed, redundant questions like "what's your full name and birth date" repeated and answered, we waited to meet the anesthetist, and my surgeons. Liz held my hand and rubbed my head as the tears came. It was clear I was sick. Very sick. And I needed a team of professional medical folk to make me better. My biggest unknown was whether there was residue cancer still in my breast and that - god forbid - it had spread to my lymph nodes.

To locate the lymph node that would tell the surgeon important information, she needed to located the "sentinel node" that first node in the series of nodes throughout the body and see if it contained cancer cells. A large man named Carl entered my pre-op area with what looked like a tiny metal tool box. Inside that tiny box was some sort of nuclear medicine that my surgeon - under Carl's watchful eye- would inject into my left nipple and then continuous massage throughout my breast while holding me down from running out of the room. Not pleasant.

 My surgeon would then locate my sentinel node via a Geiger counter - ???? during surgery. Remove it and then have it biopsied while I was on the operating table. If the node was positive, the surgeon would continue to remove nodes until she was certain she removed all with cancerous cells. Apparently as a backup to the nuclear thing I will also injected with blue dye during surgery. I peed blue for 24 hours.

 My surgery was scheduled for 4 1/2 hours and I was out in 2. Luckily I do not have any complications with  anesthesia and within 30 minutes or so I was reunited with Liz and wheeled up to my room. I was up roaming the ward within a few hours and I spent a night in the hospital - BTW, Sibley has great Mac n cheese and carrot cake. After quick consultations with both surgeons early the next day, I was released and went home.  I'm always so thankful for the nursing staff. I was well looked after and well taken care of.

Liz has been a trooper with keeping up with yet a new list of meds ( I'm on a steady diet of valium and Cipro) and emptying my drains every eight hours. I got my first look at my new chest and while I did shed a few tears, I knew it meant for me I was on my road to healing - and it would be ok. It will be a big relief to us both to have the drains pulled as early as Tuesday of this week.

This coming week brings a slew of followup appointments with my plastic surgeon to see how I'm healing and hopefully have the drains removed, with my cancer surgeon to discuss what she found, with my radiologist to see if I need further treatment, and with my oncologist to help us interpret all of it.

I very much want to say that I'm a cancer survivor. That I'm ready to move onward with my life. To honor those who battled this disease  before me. To be there for those who will battle it after me. To do what I can to play a part it finding a cure. Fuck Cancer.

My Heart is Full (video) - Shout Out of Love to My Village

Please Keep Rooting for Me!

Love, Jacki

Herding Cats - WWKD

My need for bras  - FOREVER - ends in 6 days. A week from today, July 24th - I am scheduled to have a double mastectomy. For those not familiar with that medical term, it means I have will have BOTH boobs removed.

As you will kindly recall, cancer was discovered in one of them (left one to be exact) earlier this year and I'm not interested in the stress, worry or general hassle of ensuring it doesn't comeback in the right one. So she's leaving too.  That's not to say, my cancer won't return in another part of my body. In fact, there's a fairly good chance it will show up elsewhere should it return, but having both breasts removed is the best personal decision I can make to keep the cancer at bay for as long as I can.

In any case, they are both coming off in a week.I - like most women -  have a drawer full of bras: everyday ones, sports ones, pink ones, poka dotted ones, blue ones, white ones, black ones. Strangely sad, I won't need ANY of them come next week. So as I wear them this week, I'm saying my good byes.  I've worn a bra since the age of 10 or 11. For 40 plus years. And for 40 plus years I've searched for the "perfect" bra - never found it. The good news I can stop searching, I guess.

The process to remove my boobs takes a medical village of sorts. I currently have four physicians involved. Each one has a specific role. One to cut them off and to cut out any remaining cancer, one to make the scars as minimal as possible, one to figure out next steps in the fight against cancer, and one to look after my general health and well-being. Each one prescribing meds, giving me instructions, poking and testing and giving their blessing I'm ready.  Unfortunately they don't always talk to each other and so I've spent a good deal of time this past week or so (and stress) sharing with one what I've been told by another to make sure everyone is on the same page.  If I've learned anything thru this I've learned to be a pain in the ass until I get the information I need and the answers I seek. I can't tell you how many times I've said to I don't remember how many different people these past few weeks that my worse nightmare is going to get my boobs (and my cancer) cut out only to discover I needed a test, should have gotten an ok from someone and didn't. No one and nothing is preventing me from having this surgery Monday. And if I have to herd them cats to ensure it happens then so be it.

BTW - My hair is returning. And as I predicted it is grey.

Yet I continue to lose my eye brows and eye lashes. Weird.

Walking to the dentist today, I was confronted by a nice young person raising awareness for Amnesty International. If you've ever come across these folks they stand on the sidewalk, or come to your door, seeking your attention and interest for usually a good cause. In any event, I didn't have time to stop and chat and as I walked by very politely declining his request to chat, he asked if I was interested in saving lives. That got me. Yea, I'm interested. I'm interested in saving my own life right now. Priorities dude. 

The reality of this is hitting hard. I have cancer. In a week, I won't have any breasts. Like Forever. This shit is life changing. 

I am faced with heading into this next stage of my fight without the strongest, most generous, most courageous woman I've ever known. She lost her seven-year battle with breast cancer this month. Every Thursday before my chemo, she would rise above her own pain, her own fear and she would cheer me on. She constantly told me she was proud of me. During our last visit as she struggled to keep food down, she looked me in the eye and told me how proud she was of me. She was my hero, my Wonder Woman, my coach through the hardest fight of my life, a role model of bravery and perseverance. WWKD.?...she'd fight like hell to live. Ride on, my friend.

Please continue to root for me.