Monday, September 25, 2017

Going Beyond Standard

Today, I started round two of six of the chemotherapy drug, Xeloda. As you know – if you’ve been following along - I decided to do extra chemo at the end of my “standard of care” journey, to give me the best shot known to modern medicine of not ever having cancer again. 

Xeloda is a drug primarily for colon cancer, although many women who have breast cancer that has metastasized (or made an unwelcomed return) take the drug as well. Fortunately, a clinical trial that ended in 2015 showed Xeloda could be beneficial for women like me as well. So, to no one's surprise who knows me, I'm going beyond "standard".

The short term “fear” of chemo is of course the dreaded side effects. God only knows what the long-term side effects of pumping poison into your body will do to ya. But let's stay focused on the present shall we? I’ve stared nausea, fatigue, malaise, sadness, anger, and a whole host of other shit dead on. So, after shedding a few tears in complete horror, I swallowed my first set of pills three weeks ago. You see, Xeloda is a pill form of chemotherapy. Unlike my other chemo drugs that were administered via IV through that handy-dandy medi-port installed in my chest with a direct line to my jugular (I lost that beauty along with my boobs in July), this chemo is up to me to take.Twice a day. With food. And a full glass of water. No nurse. No doctor. No one but me to remember and make it happen (and of course Liz, who, every morning so lovingly sets out my morning dosage in one of our wedding shot glasses). I admit, it takes a bit of guts on my part to voluntarily swallow chemo twice a day. But I do it because I choose to fight this fucking disease with everything modern medicine has (and thinks might work).

The side effects of this lovely drug include something referred to as “hand foot syndrome”, or more affectionately “HFS”. This is where the palms of your hands and the soles of your feet become red, swollen and blistered. Yipee! As well as the all-too-familiar twins: nausea and fatigue. At the end of my first round, I encountered a bit of nausea and my feet were sore but I think it was more due to the fact that I need new running/walking shoes – at least that’s what I’m whispering into my own ear at night. But of course, these side effects work on a accumulative effect. That is the longer you take the drug, the more likely and intense the side effects become - something to look forward to in the weeks ahead as they say. 

Eighteen weeks (on a cycle of 2 weeks on and 1 week off) on this drug will take me through the end of 2017. A full year of everything being about cancer. I never would have thought this could have happened to me and when it did, I could have never have thought I’d make it through, but I have and I will. I can only hope each one of us has the opportunity to overcome our fears and exceed our own expectations of ourselves. It's a pretty powerful feeling really. That feeling has helped me conquer much over this past year. I have come to know we humans are stronger than we think. Heck, I’ve faced everyone’s biggest fear – cancer – with my humor intact and my common sense vibrant and enlightened. Take, for examples: good quality, affordable healthcare, keeping us from a nuclear war with the world’s other small-minded “dictator”, and not forgetting the people of Puerto Rico are Americans who need our help to recover from Maria are much more important than pitting the fans of the NFL against the fans of NASCAR.

So, this morning I swallowed my chemo on a full stomach with a full glass of water and got caught up on “Schitts’ Creek”.  Funny, every time the character, Alexis is mentioned, my Echo spins awake. Funny. Keep rooting for me! #Onward

Friday, September 8, 2017


I said "good-bye" today.

Some would say I'm a natural hoarder - blame my mother. I like shit around me that reminds me of shit. Ain't nothing wrong with that. Until, of course, there's more shit than you can deal with around you. I save papers, cards, receipts, pictures, medical bills, newspapers, magazines - you get the picture.

From time to time, it all gets to me. A suffocation if you will. I need to cleanse. A cathartic need. But first, I must be reminded one more time of why I have things. So, I sort through all of it. Read all of it. One receipt, card, document at a time. One more time.

I have saved all my medical bills since my cancer diagnosis in January. Now typically that wouldn't be a lot - if one was a fairly healthy person. But, come down with cancer and medical bills fly at you from every direction. Every day. For whatever reason, I thought I'd want to look back at all those piles years from now to be reminded of what I'd been through. Crazy I know,  there's not much logic to it I get that. None the less, here we are. A bag full of old (luckily paid) medical invoices, doctor notes, and receipts. I don't need those to remind me of this fight. Hell, every time I look in the mirror I'm reminded. My hair has gone grey. My breasts are gone. My fingers are numb my finger nails black and thick. There's enough "reminders" to go around. So today, I said good-bye to that pile of paper and good-bye to the need to keep it around me.

I've also become the "family keeper of old pictures and stuff". My grandma, Arline, on my mother’s side was the family historian. I only wish I took the time to sit with her even more than I did to write down the history of my maternal side of the family. She knew it all and had every-single-picture-ever-taken to prove it.

When she died in 2006, she passed on the "keeper" status to my mom, Nela, but only because they shared a home. My mom was not the nostalgic-kinda gal. But she kept everything Grandma had saved over the decades, some of it centuries old.

When my mom passed in 2012, that role fell to me and my brother. As we cleaned out the home my mother was born and raised and died in, we lovingly sorted through what remained of our family history. Boxes and boxes of pictures of people we did not know and had no way to identify stayed in lowa with my dad (who is our family historian on my paternal side).

None the less, I brought multiple boxes of memories back with me. Along with records and receipts surrounding my mom's death, her banking records, estate related documents, keepsakes I couldn't bear to part with so close to her death. For the most part, this stuff has remained in unopened boxes, stacked in our spare room, shoved into the attic. Until today.

I went through every piece of "memory". Every card of sympathy and well-wish Everything. In doing so, I re-lived the pain and sorrow, the hurt and anger and confusion of losing my mom at 66.  Of having cancer at 53. Re-lived it all. Felt it all. Let go of it all. And then I mowed my yard.

And so on the day before a massive category 4/5 hurricane is to come crashing all around my brother and his family in Fort Lauderdale - I am anxious and nervous and a bit sick to my stomach at what may come to pass -  I cranked up my SONOS to Pandora's  70's station, built a fire in the back yard, and said good-bye to stuff that no longer mattered. And in the process, rid myself of the heaviness, the sadness of it all.

Liz will be proud I've "purged". After all, our goal is to squeeze ourselves in about 1,000 square foot condo (God-willing it's still standing after Irma) in due time. To reach that goal is gonna take many more days like today. But I have started. I've started saying good-bye to memories and to stuff that holds no healthy purpose to me going forward. In the years - decades- I have left on this Earth, I vow to be surrounded with what is "today", what may be " tomorrow". And I will hold what "was" close to my heart - where it belongs.

None of us knows what will happen tomorrow. None of us. What we do know is that we can choose to love deeply, to feel life's valleys and mountains deeply. We can do better for and by others. We can live and love life. Keep rooting for me.

Monday, September 4, 2017

Paying It Forward

Today I begin 18 more weeks of chemotherapy. Honestly, I'm scared. I know (or have a good idea) of how this particular drug (although different from my other chemo drugs) will make me feel: fatigued with GI issues and sore hands and feet. Yet, I open the bottle of pills that are now sent to my house and take two at breakfast and two at dinner. Increase to three at breakfast and three at dinner for the second week. Fourteen days on, seven days off - for six rounds, eighteen weeks. And hold on.

We are prepared should the known side effects, listed earlier, begin to surface. This drug like the others produce their crappiness on a accumulative basis. They get worse as the weeks on go.


All of this because I want to be a part in out how medical professionals and the women who will come after me in this fight can better manage, defeat and prevent cancer. Breakthroughs in research and medical care have come via clinical trials. I know the care I received, the techniques of my surgeons, the confidence of my oncologist were the results of these efforts. Of the brave women who came before me, who volunteered to try new drugs, new regimens, undergo new surgeries. Some of which worked, some sadly that did not. I wish to pay that forward.

So my team had been looking for a clinical trial for me since my diagnosis. Sadly, there aren't as many as you'd think. The protocols and requirements to be included in a trial are extremely stringent. You have to have a specific type of cancer, have had a certain prior chemo protocol (or not), be of a certain age, live nearby (or reasonably so) in order to participate in the treatment and/or evaluations, etc. Many trials involving triple negative breast cancer are focused on metastasized cancer. Cancer that has returned and is very difficult and or impossible to cure. I suppose this is because triple negative cancer is the most aggressive of all breast cancers. Chances are decent that this bastard will return. Finding a cure for when it does is certainly critical.

Coming out of surgery, however, my oncologist mentioned a trial, being conducted by the National Institutes of Health (NIH), that sounded promising. The purpose of the "Eastern Cooperative Oncology Group" or "ECOG" ,  according to " : "This randomized phase III trial studies how well cisplatin or carboplatin (platinum based chemotherapy) works compared to capecitabine in treating patients with remaining (residual) basal-like triple-negative breast cancer following chemotherapy after surgery (neoadjuvant). Drugs used in chemotherapy, such as cisplatin, carboplatin and capecitabine, work in different ways to stop the growth of tumor cells, either by killing the cells, by stopping them from dividing, or by stopping them from spreading. It is not yet known whether cisplatin or carboplatin is more effective than capecitabine in treating patients with residual triple negative basal-like breast cancer." 

Because I did have "residue cancer" post-chemo, it seemed I would qualify for this trial. I fit all of the multiple qualifying factors and qualifications to be a participant and the trial - involving over 560 women- was nationwide and my hospital, Sibley, was the local participating institution. There was only one factor that could disqualify me. Just how much residue cancer did I have as opposed to how I needed to have to qualify. Well, as my oncologist said several days post-surgery: "I have good news and I have bad news."  As it turned out, I did not have enough residue cancer to qualify for the trial - that was the good news by the way, along with the fact that neither lymph node removed during surgery showed evidence of cancer.

One of the drugs being used in the ECOG trial had already gone thru a "successful" trial in Asia. The CREATE-X study, presented at the 2015 San Antonio Breast Cancer Symposium, showed to increase disease-free and overall survival rates of folks like me. This result coupled with the fact that capecitabine, or Xeloda, is a pill you take at home verses via IV, is "less toxic" than its counterpart drug in the ECOG study, and that I had a 50/50 chance of being randomly assigned to either drug had I qualified, we have decided to "shadow" the ECOG trial by taking capecitabine (Xeloda) for six rounds (18 weeks) as prescribed by the trial. 

Today is Day One of the next eighteen weeks - my "maintenance drug" meant to keep this bastard from ever returning. And while I'm not officially participating in the ECOG trial, I hope whatever happens to me - during treatment and after - can be helpful in making care and treatment strides for women who will fight this battle after me.

I plan to keep up my daily morning walks with Bettie and add in increasing time on my Concept2 Rower to strengthen and stretch my chest. For as long as I can. I've healed extremely well from surgery. And yea, I don't miss putting on, tugging at, and otherwise managing a bra, in case you were wondering.

We have two big trips planned this fall - I don't plan to miss either. We are contemplating our futures. What they hold and where they unfold. We are looking forward. Keep rooting for me.