Wednesday, May 24, 2017
Peripheral Neuropathy. According to www.Chemocare.com (a go-to website for me these days), “the body's nervous system is divided into two major systems; the central nervous system and the peripheral nervous system. The peripheral nervous system is also divided into two major parts, the somatic nervous system and the autonomic nervous system. The somatic nervous system consists of peripheral nerve fibers that send sensory information to the central nervous system and motor nerve fibers that send signals to skeletal muscle. The autonomic nervous system controls smooth muscle of the viscera (internal organs) and glands.
I gotta tell ya, this chemotherapy shit is wearing me down. 20 weeks, 140 days, 8400 minutes. And I have been taking this ordeal minute by minute. That’s a lot of minutes. A lot of minutes feeling generally and specifically awful. A lot of minutes concerned for my wife’s well-being and how she’s holding up. A lot of minutes thinking. A lot of minutes terrified.
However, I can now count the number of treatments I have left on one numb hand – five. As you remember, I got “extra credit” for the one treatment of the special “non-allergic” version of the chemo drug that made my face, tongue and mouth numb (!). That’s the good news in this edition. Always looking for the good news!
Say, if you get a moment, give my wife a shout of encouragement will ya? She’s not on social media but you can email her at firstname.lastname@example.org. Just a “hello, been thinking about you. You are terrific” kinda email or text. She’s my hero and I know without a shadow of a doubt I would not be here right now if it weren’t for her unrelenting support and determination. I cannot imagine what she's been going through. As I can attest watching her perform numerous Ironman competitions, it's always easier swimming, biking, and running than it is watching on the sidelines and worrying. She officially took me “for better for worse, for sickness and health” just 2 short years ago. Neither of us could have imagined what that vow would really mean. I know it now.
Posted by JJB at 1:07 PM
Tuesday, May 16, 2017
Ever wonder how much it costs to survive Cancer? In dollars? Real dollars. Well, because I’m a naturally curious individual and a “numbers person” at heart, I have been keeping track.
Since mid-December 2016 (when I had my first mammogram) through my four first chemotherapy treatments (that takes us through the end of March 2017, if you are counting folks). So, that’s about four months of doctor visits, scans, blood work, surgery to install my medi-port, and four chemotherapy treatments (one every other week).
Yep. My chemotherapy treatments alone are over $13,000 apiece.
Of that, we have paid out of pocket a total of $690.55 (not including our monthly premium).
Over the course of my treatment (the full 20 weeks of chemo, followed by the double mastectomy and possible radiation therapy), I suspect we are looking at close to $300,000 to cure me of Cancer.
Healthcare is complicated – and expensive.
Access to good, reliable, affordable healthcare is vital. If I didn’t see that before my diagnosis, I know it now. If this very healthy, non-smoking, 53-year old with no family history can come down with Cancer, it can happen to anyone of us. The “insurance” of having good-quality, accessible, and attainable healthcare should be a given in the “richest country in the world”. And my newly-found “pre-existing condition” may haunt me for the rest of my life regarding how I get my healthcare, where I get my healthcare, and how much more expensive my healthcare is, if some in Congress and this Administration gets their way (I refer you to the title of my blog). It’s truly frightening – and real.
The discussion about healthcare in this country will continue. So will the invoices. I will keep you posted.
Posted by JJB at 1:34 PM
Thursday, May 11, 2017
Sunday is Mother’s Day. I think a lot about my mom this time of year. I suppose most folks do. It’s a day to celebrate your mom, after all. I wonder how my fight against Cancer would be different if my mom were still here. If I were only able to call her up and talk to her about it all. I would worry, however, that she would feel badly for me. That she would somehow internalize this as being her fault, something she did wrong. I can only imagine this is extra hard on my dad. How helpless he must feel for his daughter to have Cancer at 53. We email and “talk” as much as possible these days. Both of us struggling with our health “issues”. I find comfort in knowing he is there for me, but I worry that he worries a lot about me and that he feels helpless in the face of what is happening to me Like others around me, I need him to be strong, to be positive, to be active in my life….. Jesus. Yep. This post is a downer.
This is mostly because I’m withering from effects of the steroids I have to take to keep the allergic reaction of the chemo drug at bay. I feel generally crappy and depressed most of the week now due to these damn drugs. Ironically, it’s not the chemotherapy drugs that are keeping me down, it’s the meds I have to take to keep my body from fighting off the effects of the chemo drugs. And just about the time I feel better, it’s time for another round of chemo.
My oncologist has me back on the original chemo drug for the remainder of my treatment. As you will recall, the drug that caused a torso rash and itchiness. I guess that was less scary to her than the numb face, mouth and tongue caused by the supposed “non-allergic” variety of the drug. Hmph. To keep the rash at bay, I’m on a heavy dose of steroids for the first few days following treatment. Alls great until I come off the steroids. Crash is more like it. And I crash hard. Fatigue, dizziness, depression - generally crappy.
And thus, has been my 2017. I have been fighting Cancer since January 24, 2017. That’s three months, seventeen days. In that time, I’ve had numerous doctor visits, scans, drugs, chemotherapy, as well as a huge amount of pent up tears and fears, coupled with built up hopes and sheer determination. To say I will come out the other side of this a changed person is not an exaggeration. I have learned a lot about myself, my wife, my brother, my family, and my friends who have all had a hand at making me a stronger, more resilient person through this. Guess perhaps, this is by some grand design. Since I’m going to have to muster that strength now for the rest of my life.
I am hopeful I will beat this. In fact, I am determined to beat this. But I worry. I worry mostly at night and when I’m coming off the steroids. I worry about it coming back. I worry about the very real possibility the rest of my life will be spent in total fear of “it coming back”.
Not all Cancers are the same. It’s important to understand the kind you or your loved one has. Many people beat Cancer – never to have it return. Some struggle the rest of their lives in chemotherapy, drug trials, etc. beating back the return of Cancer. The latter is certainly not my Option A, I can tell you that. It’s not even a preferable Option B in my book.
If you have been following along, you know I have triple-negative breast cancer. A 2007 study of more than 50,000 women with all stages of breast cancer found that 77% of women with triple-negative breast cancer survived at least 5 years, versus 93% of women with other types of breast cancer. Now, I have no plans to live just 5 more years and so, yea, this scares the be-jesus out of me.
Sunday is Mother’s Day. My mom lived to be just 66 years old. Her only sister, the same – 66. I always thought they both died at a very young age. I will now have to fight to live to be 66. I will have to be vigilant to live to be 66. I will have to have access to good healthcare to live to be 66. I will have to be “lucky” to live to be 66. I will need to "believe" to live to be 66. I will no doubt need to live in a state with a Democratic governor to have a fighting chance to live to be 66.
I need a stiff drink. And - I need to cheer the fuck up. Hell, I’m still here. I have a lot of fight left in me. One day at a time, right? I have a huge network of family and friends who are pulling, praying and putting out for me every day. I have a wife who loves me, supports me, believes in me. I will become a Cancer survivor. And now for the rest of my life I will be a Cancer survivor. And I will wear that badge of honor proudly.
I have been blessed to have known my great-Grandmother, to have learned to laugh and dance from both my Grandmothers, to feel the love and support of my Aunts, to have the courage and resolve of my Mom. Happy Mothers' Day to everyone who has influenced you in your life like these women have mine.
Fuck cancer. Root for me. Pray for me. Give to Cancer research. Be an educated, courageous voter. Watch me.
Posted by JJB at 6:48 AM