Day 5: I woke up at six a.m. after sleeping for eight solid hours, albeit aided by anti-nausea and painkilling drugs. Surprisingly, the quality of my sleep has changed very little. I’ve always been able to sleep well and relatively uninterrupted for seven or eight hours, and to arrive with the morning sun into a new world, splendid with purpose and energy.
So far, the main difference between my pre-diagnosis sleep and my current sleep is that I now wake up tired. I stand up slowly to avoid the inevitable lightheadedness that fills my vision with tiny black dots and comes with a partial loss of equilibrium. Once my head clears, I move from the bedroom into bathroom and from there to the living room and my chair. Those few steps take a noticeable toll on my strength.
San brings me a breakfast of fresh fruit and coffee, plus a small glass of apple juice laced with a high fiber additive to combat another one of the predictable side effects associated with chemo. The fresh fruit is served at room temperature, which is another consequence of another one of the cancer drugs coursing through my system, the one that disallows anything cold meeting my lips or nose because it could interrupt my ability to breathe. So, at least for the next six months I have to avoid opening refrigerators and freezers, touching water in a sink or from a faucet that is less than room temperature, enjoying cold drinks, ice cream, or even a glass of cold water.
Days four and five following the all-day chemo assault are all about feeling tired. I was forewarned. My strength should begin to recover in the days ahead, but for now I am caught in (with apologies to Milan Kundera) a “bearable tiredness of being,” an experience of my body that is new to me, surprisingly annoying, yet entirely manageable.
Yesterday was a good long day at the chemo ranch with some morning blood work that allowed seven hours in the comfy recliner chair while my system received three different poisons, dextrose, Zofran, and a bunch of other secret ingredients designed to massively assault the bad guys in a way that also lessens the likelihood of negative side effects, and then, for the next two nights and three days, live and sleep with a fanny pack containing an electronic pump that keeps the chemo flowing through plastic tubes that run from my waist into the port cut into my chest and then into my blood system.
If you think that was a long sentence, imagine living it.
I tell you, brothers and sisters, you cannot do this end-of-life journey through Cancerland well without a lot of love and support from your family and friends, the kind of love that endures without complaint, that helps you manage the pain and the changes and the nausea and the boring in-betweens, that keeps the fun stuff fun if not funner, and that holds on to you—the you that you were before all this shit—in their eyes, their smiles, their talk, and their hearts.
Nor can you do it and not lose your way to the bottomless grip to the grief and self-pity without an oncologist you trust with your life – our Dr. Rohit Sud - and without a caring, compassionate and incredibly knowledgeable staff working in a place that feels right: Monica, Tia, Jan, Gerry, Ashley, Sandy, Donna, Lauren, and Terry of the Four Winds Cancer Clinic.
In all of these parts of living as well as I can while dying of cancer, I have been greatly blessed. But if you have been reading my blog regularly, you know that. I just cannot stop saying it
It’s all part of the Chemosabe life. If you want to know what that means, keep reading.
***
Dr. Rohit Sud always knocks on the door to the consulting room before entering it. We have a nine o’clock appointment with him and Ashley, the always-chipper nurse, had already taken my vitals. I was happy to know I was still vital after all these years. I’ve even gained five pounds, which in other circumstances might be a cause for concern, but among those of us in Cancerland, weight gain is a blessing.
While Ashley was going about her tasks she told us about her weekend birthday trip to Vegas, where all she won was strengthened legs from all the walking she did up and down the Strip. She is 27 years old, an ex-cheerleader, and clearly still in excellent physical shape. We had to laugh. San’s folks used to walk that Strip without complaint back when they were in their 60s and before the closer casinos opened up along The Big Muddy. But even Ashley’s walking travails were related to us with a smile on her face. She is a happy soul doing good work in the service of others. We love to start our all-day chemo treatments with my weigh-in and that special Ashley smile.
Dr. Sud is always on time. Always. We are especially grateful for his on-time habit because today is the day we learn about my test results from last week. So, after he enters and we exchange a quick “hello, how are you?” of the phatic communion variety, he sits down in a chair, pulls it closer to both of us, and opens his file. “So,” he begins as a big smile can’t help but widen on his face, “the results are in and here they are.”
We arrived at Four Winds Cancer Clinic early for our 8 a.m. appointment with Dr. Sud. Truth is I am always a little apprehensive in advance of the all-day chemo treatment, not because of the treatment itself so much as because I am at my best the week before it and I will be at my worst for the week to follow it. Inject your vascular system with multiple chemotherapies, anti-nausea drugs, magnesium, and steroids for six or seven hours, then slap on another chemo treatment in a 24/7 slow release fanny pack that you wear for two more days and nights, and it tends to wear the body down.
As readers of my blog know, one result for me has been is a low white blood count that gets countered on Thursdays with another injection that excites my bone marrow to work harder, but that by Friday produces aches and pains that with Advil gets dulled down to near zero over the weekend. By the following Wednesday, or one week after the fanny pack is removed, I am usually less affected by chemo brain and the chemo sweats, and feeling just fine and dandy. Just in time to anticipate the next all-day treatment on the following Monday. Or, as will be the case because we are at the 2/3 milestone, another series of CT-scans, blood work, and a bone marrow scan. Sigh.
The good news is that by the time you read this blog Round 8 of 12 will be history, except for the scans. The end of the chemo treatments is in sight! I am ready – and San is ready – to be done with this part of our journey into Cancerland.
***
Since I was diagnosed with Stage 4 Pancreatic cancer and entered an aggressive chemo treatment in early June, there have been clues given to me about how this initial part of our journey through Cancerland – this new mystery in our lives – might turn out. But as is the case in many detectives engaging those mysteries, connecting the dots is much easier to accomplish in hindsight.
One of those clues is that when patients reach the end of their treatments they are entitled to “The Happy Dance.” Each dance involves members of the oncology team and San and I have witnessed a few of them. But we have also observed that each dance is a little different, tailored to the patient. What is in store for me? For us? No matter how hard we tried to get details prior to the dance, the team members only gave us back big smiles, laughter, and obvious deflections. So that is how it was to be. It was, for this detective, “A Case of Strategic Dance Ambiguity.”
***
Doctor Robin’s assistant called us around ten o’clock to let us know that the Doc was a little backed up and needed to move our scheduled appointment from 11:40 to noon. No biggie, but nice of the Doc to call. Last time we had an appointment I had complained about sitting too long in one of the clinic’s hard chairs, but that was back when I was still experiencing pain in my back. That she…
I have not cut back on some of the meds. Other than that I’m fine.
I mean there’s nothing to worry about. I’m doing fine. I’m also doing fine with the drug dosages too. I still take the prescribed doses of long-term oxy twice a day, Advil every six hours, B-12 and ALA twice a day, Prilosec once a day, and depending on the state of my “regularity,” and whether or not I needed to rely…