San and I arrived at the clinic at 8 a.m. We are in early for blood work, as Dr. Sud, whom we are scheduled to meet at 9 a.m. and the lab results take a little time. The good doctor decides to either sign off on the chemo treatment after reading the lab results, or, as was the case last time, postpone them until my numbers are good enough to stand the intensive poisoning that my aggressive therapy requires.
Usually this blood work is a routine procedure. The oncological nurse – yesterday it was Monica - “sticks me” (her term) with syringe that is injected into my “port,” draws the necessary blood, labels it with my name, and hands it over to the lab for analysis. Usually San and I then exit the clinic, drive to a nearby Starbucks, get some coffee and a scone, and return for the results about an hour later.
But not yesterday. I’ve had some trouble with my port. Nothing serious, nothing that unusual, but the “stick me” part of the procedure doesn’t work if my blood doesn’t fill the syringe. Monica explains to me that sometimes the body, during the interim week when nothing is stuck into it, responds to the portal by trying to cover it with tissue. When this happens, the port gets blocked and while the chemo drip can go into the port, blood can’t come out of it. So Monica and I try some remedies. These include standing up, turning my head, raising my right arm and playing “sock puppets” with my fingers, coughing, sitting back down, being reclined in the chair, and, if none of this opens the blocked port, we do it all over again.
We repeated this procedure twice but the port did not sufficiently open.
Monica is a super oncology nurse and very knowledgeable about what to do. We have learned that she, too, has major health challenges, not of her own but with her daughter, a lovely eight year-old who suffers from a rare skin condition that requires regular trips to a specialist in Denver to treat. Without going into too many details (it’s Monica’s story, not mine), I ask you to imagine having a young daughter with a rare illness that shows on her face. It is curable, but it takes time. Now imagine what you might do, as a mom or a dad, to lessen the issues that might come up. Or the expense. Or the questions. Of course the adults all know that what is on the inside of a child is far more important than what shows on the body, but we were all children and also know how hard that message is when you are eight.
Listening to Monica’s story reminded me how lucky we have been with Nic. Aside from an allergy to almonds and shellfish, one scary cut on his head when he fell on the monkey bars at school, and a few sudden fevers - one requiring immersion in ice - he had a fairly healthy childhood.
The other thought was how lucky I am – all of us in this room – to have such a caring and compassionate human being on our side during our own bout with a major health challenge. Thank you, Monica, for who you are as well as what you do for us.
Monica is also a descendent of the French philosopher Albert Camus on one side of her family and Cheech (of Cheech and Chong fame on the other side), and is a bit of a comedian as well as an excellent practical philosopher, which fits my spirit perfectly. She jokes with me about more drastic procedures that she could use but instead goes to plan B, the practical philosophy of which is to inject the port with some drug (begins with Heper-something) while calling for an assist from Jackie, the resident phlebotomist, who expertly draws my blood in the old-fashioned “through the vein” way. We don’t want to needlessly delay the lab work waiting for the port to clear, and sure enough, the lab results were awaiting Dr. Sud on time for our appointment with him and the port was finally cleared just before that.
I love it when a plan comes together, don’t you? Thank you, Jackie, for expediting the labs.
Dr. Sud is his usual charming, affable self – what can I say? He is a refreshing tonic to my usual (now only imagined) gin. We chat for awhile about things that have nothing to do with my disease or treatment – and everything to do with why San and I feel so good about his care. We talk about our families, the challenges of raising kids, recent articles we have read, and so on.
Somewhere in that exchange we got around to my meds. Dr. Sud is decidedly not one of those docs who favors long-term pharmaceutical use, and once again he “challenges me” to cut back on the frequency of two of my drugs, always with the understanding that I feel any pain or nausea, I should use them. “Remember,” he says with a big smile, “our goal is to get you back to normal, which was a life without these prescriptions. We want to get as close as we can to that.”
So I agree. San laughs, because she knows that my agreement really means that she will be the one monitoring and administering them. She will also have to change the app on her iPhone that has come in very handy for scheduling meds and treatments. We leave the consulting room and move into the chemo treatment room with confidence and none of the anxiety we had the first time we entered here. It is closing in on 10 a.m.
Two women – we later learn it was a mother and her daughter – are in the chairs by the windows and a woman – Rebekah – whom we know from past visits is in the chair across from the one I take. Next to me is a fellow new to us, but it turns out he is a veteran of the orange chair who underwent aggressive therapy over a year ago and is now on a maintenance schedule that calls him into the clinic only once every two months.
Bob comes in shortly after that for a brief visit. You remember Bob? He is wearing the infamous Chemo-Sabe teeshirt. He is a “graduate” of the clinic who returns from time to time just to spread good cheer. He and I chat for a minute or two, I give him my blog address so he can read the entry about inspiring teeshirt, something Monica, Jan, and Jerry all encourage him to do.
This exchange makes me smile – all writers are pleased to know that we have readers – and soon thereafter my pre-chemo flow of anti-nausea drugs and fluids and liquid magic begins. San and I begin playing iPad Scrabble, our favorite activity during chemo treatments, and no surprises she beats me badly during the first round. I take the second round by one point.
Around noon – I tend to lose track of time in the chair – San leaves to pick up some lunch. For some reason I am craving a Firehouse sub, which also gives her a chance to visit the nearby Whole Foods for the best peaches we have eaten in Phoenix since we moved here. Our pals Steve and Diane had us over for a lovely dinner on Sunday and they served them atop a homemade shortbread cookie laced with orange zest and topped with fresh whipped cream. Yum! Had to get some of those peaches for ourselves after that.
While San is gone, Jan makes sure I am comfortable and offers me a free lunch. I explain that I had a craving for a Firehouse sub, and she smiles. Jan is a cancer survivor as well as a full time employee of the clinic and she, too, has health challenges that make her caring nature, upbeat attitude, and concern for us that much more endearing. I learned today that her husband had an “episode” over the weekend and learned that their health provider changed something and now they may have to contest it or find a new provider. Not good news. Yet here she is, chipper as always and full of concern for all of us. Thank you, Jan, for who you are and for all you do for us.
As I look around the room I am reminded that all of us have a lot going on, both here and in our homes. When we share our stories I learn interesting facts not just about cancer, or about cancer treatments, or about dealing with some of the negative side effects, but I also learn about our common humanity, our sense of community, and the vital importance of acting on the big difference in attitude, in communication, and in outlook between living with cancer rather than focusing on dying from it.
Being realistic does not have to mean being down. So I’m not at all surprised when Terry visits the room, the music of Bruce Springsteen comes up, and we are both transported back to New Jersey in 1975, the summer of “Born to Run.” She is from Freehold, she knew all of the beaches, the clubs, the lore of The Garden State. Since I spent part of my teenage years in Philly, and the summer of ’75 on Long Beach Island, courtesy of my best friend Stew and his generous parents who rented a home there, we had a lot to talk about. We share all of the Boss’s concerts we’ve seen, the songs we love, our feelings about Jersey, the era, youth and beauty – the whole thing - and time flies. Bruce was and still is, for both of us, a spiritual leader of our generation whose gospel truth is contained in his songs. Thank you, Terry, for reminding me of it.
I have to add that no one I’ve met thus far doesn’t have some kind of a spiritual belief or hope that helps them deal with the bad news and bad days. I’ve never been an organized religion sort of guy (although I am intimately familiar with most religious texts), but I have always believed that everything and everyone is somehow connected – spiritually connected, not only to each other and this earth but to the whole of the Cosmos – and there is a mystery behind all of it. I don’t think we are supposed to figure it all out.
I think that religions of all kinds – in addition to peddling some genuine nonsense - offer some insights into the big mystery, as does science, as do artists, as do soldiers and sailors and candlestick makers. I think also of Christopher Hitchens, a writer I otherwise greatly admire, and wonder about his staunch atheism and unwillingness to change it despite his terminal cancer diagnosis. On one hand, I admire him for doggedly sticking to his beliefs. That, after all, is a true test. And they are his beliefs. He’s not asking me to share them. On the other hand, Chris, my friend, so far you are the only atheist I’ve found in a cancer clinic.
I’m sure there are others who share his non-belief, but at this point in my life, I’m just not interested in their arguments.
San returns with our Firehouse subs and with the excellent peaches, a few or three for us and a bag full that she gives to the nurses. She and I eat happily, so happily in fact that I eat part of her sub in addition to my own. What is it about chemo and my appetite? No one knows. Some people have exactly the opposite reaction. Others report no change. But here I am with oceans of poison flowing directly into my gut area and all I can think of is a Firehouse Philly cheesesteak sub.
I should also say that during this part of my treatment day I feel good but “floaty” – a curious mix of lightheadedness combined with a general sense of well-being – which, if given half a chance becomes a urgency to talk with other folks in the room. Which I do.
Dr. Sud comes in to check on us and it isn’t long until he and I, too, are engaged in fun conversation that, given the setting, is as close to The Daily Show as is prudent. What can I say? We have a really good time together, me and my oncologist. The doc and I were both college debaters and both of us admit openly to a certain fondness for the activity, although unlike today’s policy debaters, we prefer the old style, when debate was less about fast talking salesmanship than about exchanging reasonable ideas interspersed with good humor.
And man oh man does the doc have a great sense of humor! At some point in our banter and in between laughs, I tell him that our dear friend Vikki, also a wonderful doc, for a short time left medicine to arrange flowers (she was burned out, but returned to medicine when, one day after opening her malpractice insurance bill, she realized she had spent years in school learning to be a healer and here she was worrying about “a seasonal mix”). I added to the story, “yeah, she is now a recovering physician – you know, one day at a time.” That cracked him up. Thanks, doc, for another great conversation!
San had by that time struck up a conversation with Rebekah, a lovely soul and an upbeat woman in her forties who, upon learning of her diagnosis and no longer as interested in her old job, turned her executive background in marketing into a campaign for a family friend who is a Christian singer now enjoying success recording for a major label in Nashville. Her story is punctuated by her love for her two children and some major sadness that I won’t talk about (it’s her story, not mine). As I listen to her, I am once again reminded how lucky I am to have San and Nic by my side, always.
I am profoundly grateful. Thank you Nic and San, the two halves of my life that join together at my heart.
We are also happy to have Rebekah as a new friend. Rebekah and I are “racing” to see which one of us finishes the chemo treatment first. She wins, but only by a couple of minutes. Monica fits us both with chemo fanny packs and we all hug and say our Four Winds goodbyes. Thank you, all of you, for making this part of our journey such a positive, uniquely caring, and enjoyable experience.
That combination of adjectives is – no doubt about it - not one I ever envisioned for a cancer clinic. Now, as San says, we wish this humane approach to healthcare - one that combines authentic communication, compassion, humor, and genuine care with complete professionalism and state-of-the art knowledge and practice - was an integral part of the universal coverage that everyone – and I mean everyone – in our society deserves.
Today has been a good day. I finished it in my usual full body sweat (pancreatic cancer is part of the endocrine system and when it is attacked by one of the chemo drugs, it tends to produce this particular effect, known as “chemo fever”).
As we exit the building we see another haboob moving low, dark, and dirty through our town. Fortunately, we are on the edge of it and make it home. Yes, I know that is an apt metaphor. Saying so only makes me smile.
Home again. Into my comfy blue recliner again. I am very, very tired. This time the chemo took a little more out of me. As the French philosopher Roland Barthes once put it, I have an “absence of a presence” inside my body, which is difficult to describe but distinctive as a feeling.
Here’s the thing: For a fleeting moment or two I have the mental image of the chemo killing off the good cells as well as the bad ones. Maybe the accumulated assault on my system with all that poison, produced a hint, a foreshadowing of what death feels like. Maybe there is a presence of an absence as the body dies and the spirit, or energy, or soul, or whatever it is finally released into the Cosmos. I don’t know. I’m not sure anyone does.
But it’s not over yet, and with a little luck . . . . Fingers crossed not for a lot longer! I have – we all have – goals to achieve, places to go, children and grandchildren and even pets to love, friends and relatives to spend quality time with, and so much more to learn about our journey.
I am snapped back into the here and how with a call to dinner. Nic and Alyssa made a scrumptious baked ziti for and after I demolished two bowls of it, I fell sound asleep in the blue chair, fully reclined. No wonder. I was full of chemo and food and the joy of living with love and human kindness, counting our blessings when our cancer plight – tough as it is and no doubt will become - is placed narratively as well as physically alongside of other people’s health challenges and their own existential struggles. All of us – all of us - take it one day at a time.
One glorious day at a time, made even more so by the care and compassion of others. We all made it through another treatment, with a little help from each other.
Life is good.
Postscript: Woke up today feeling much better after a good night’s sleep. Dreamt of the next season of “Sons of Anarchy.” Don’t laugh. Some dreams, I’m learning now from personal experience, you just cannot explain as anything other than the obvious. I love this series. I want the next season to begin. So it goes.
I am still tired and a little nauseous, but not anything I cannot handle. San and I return to the clinic for the fluids and steroids that combat both symptoms and I leave in good shape.
Once again we enjoy our two-hour stay. We make some new friends from Michigan, a husband and his wife, the wife undergoing treatment, and we talked about a lot of good things, from those peaches we brought in yesterday (a big hit with the nurses) to civil rights in the South, to football coaches (San reminds us of her favorite coach, Bear Bryant, and his leadership of racial integration at a time when it was not a popular move in Alabama), the Vietnam war and its powerful memorial, to who makes the best fast food fries in town (Surprise! It’s apparently Del Taco!), and even shared humorous quips about how we respond to others’ looks or turn-aways when they see a chemo cap or fanny pack.
Quote of the day from the woman in the chemo cap (whose name is Debbie): “Yes, I lost my hair but the good news is I don’t have to shave my legs!”
Today’s volunteer, Donna, worked with Gerry and Monica to ensure we were well cared for, hydrated, and fed. She also told us about her love of riding a big BMW motorcycle with her husband throughout Europe and the United States, racking up 300,000 miles over the years! The two hours passed as if minutes. We exited the building in time to run a couple of errands and were home in time for dinner.
Tonight we dined on Nic’s beef stroganoff … delicious! For the foodies out there, this is an authentic recipe that requires marinating the seasoned beef in Worchestershire Sauce before sautéing it in a butter-and-flour roux, then adding beef broth slowly to the roux until it thickens, then adding a healthy half cup of Dijon mustard, and bringing the sauce to a simmer until it thickens again. Drain the marinade (reserve the sauce) and then sautee the seasoned beef quickly in a pan with a little melted butter and olive oil over a high heat until browned. Pour the sauce over the beef and place in a pre-heated 325 degree oven. Bake covered for two hours, then add a large package of mushrooms, and bake for another hour with the cover removed. Boil the noodles and drain. Add the beef and sauce to the noodles and allow the noodles to soak up the broth. Garnish with cornichons and parsley. Serve with sour cream (if desired) and a good dark pumpernickel bread or whatever you have on hand.
I guarantee you won’t be disappointed. Nic is all smiles when he and Alyssa serve it. There are few winter dishes that bring happiness to the summer nose. This is one of them. But what it does to your tongue when you taste it, well, that should probably be reserved for dining with those you truly love. Which of course, we are.
Max is the only one of the loved ones not treated to a dish of this beefy aromatic treat, but he is clearly doing his very best “I’m a good dog, very cute and all yours” performance for leftovers that probably won’t be as easily forthcoming as he imagines. Why not? Because yesterday he was a bad dog. He cleverly managed to steal half of Nic’s lunch - a Western Bacon Burger from Carl’s Jr., snatched while Nic was away from it - and get this: Max did it without disturbing the bun or the fries.
So tonight, while we are oohing and aahing over the food, there he sits patiently waiting, hoping if he does his very best “I’m your dog, I know you love me, and a piece of beef from that dish would prove it” he will earn a little bite.
I’ll watch. San and I are not big on allowing a dog to go too early to table food. But I’m still betting on Max. How can you say no to a face like that?
Thank you, again, everyone! Round three is behind us.
Yes, there was a little nauseous discomfort, a bone-tired aftermath that came equipped with a presence of an absence feeling I’ve never felt before and that may foreshadow the end of my journey. And yes, having cancer sucks.
But living with cancer is living with hope. It is embracing the happiness that is always available if we just look for it, and making others happy whenever we can. It is accepting the fact of death with a decent, if at times irreverent sense of humor. Last but certainly not least, living with cancer means believing that our lives matter. The goodness we do and have done, the joy we still bring and have long brought to others, the knowledge and skills and stories we pass on, will go on and live on after we die.
We have all been bad dogs. We all want forgiveness. But forgiving ourselves is part of being forgiven by others. Max and me, well, we are both learning how best to do that.
Living with cancer is also living fully in each day and in each moment, the “here and now” that is really all we have to live in. One benefit of that life strategy over any other option is that living fully in the present denies the time wasting, the life wasting habit of living for the “there and then” that is already gone. Life moves forward, not backward.
So must we.
Yes, once again: having cancer sucks. Chemo is poison. None of this journey through Cancerland is without risk or uncertainty or consequence. The risk and the uncertainty and the consequences are not ours alone. We share them with those whom we love and who love us. Sometimes we both hurt, in different places and for different reasons, but pain is pain. And pain sucks, too.
But here’s the big lesson in pain management that I have learned during the past six weeks of my treatment: Love beats back the pain. Joy beats back the pain. Doing what you want to do beats back pain. Laughter beats back the pain. Friendship beats back the pain. Forgiveness beats back the pain.
And yes, no doubt the magical meds help too. They remove the physical impediments to enjoying the good stuff of life. But it’s the good stuff that we live for.
In the end, we all know who wins this fight. Death comes to all of us in this life, one way or another. Worrying about it is pointless and may even hasten it. Yes, the necessary end-of-life legal paperwork is already signed and there is no doubt that one of these otherwise fine days it will be useful. But until then …
Until then, life, wonderful life in all of its splendid beauty, mystery, and possibility, goes on …