kenisms

November 7^th (There You Are)

People asked me when it started. When did the tumor let me know it was there? If it was trying to let me know it was there, it spoke too quietly, for I never heard it. I had a cold. A little sore throat. When I went to see a doctor, it was to have my hearing checked. That turned into a visit to an earn nose and throat doctor, which led to a CT scan, and then that ominous call requesting me to return to the clinic.

It was Thursday, October 16^th, at 1:00 pm. When you hear that the mass they found on the back of your tongue is cancerous, you remember every detail of that day. We walked into the doctor’s office and were told to make ourselves comfortable. As Deb and I waited nervously for what was clearly not shaping up well, we exchanged small talk, trying hard to make everything seem fine. No more than five minutes had passed when there was a soft knock on the door and at once, the doctor and three other clinic staff crowded into the room. I remember how hard Deb was squeezing my hand.

After an introduction that included the ironic question, “How are you doing?,” the verdict was delivered. “The mass we discovered is cancerous.” I was glad I had not answered the question of how you are doing before I actually knew how I was doing. To their credit, the doctor was extremely empathetic all the while convincing us of their confidence in the diagnosis. She assured us almost immediately that it was a highly treatable and very responsive form of cancer. She went as far as to say she could almost guarantee us full cure. As Deb and I absorbed all of this, she went on to describe the process. The treatment for this cancer would need to be a combination of radiation and chemo. There would be a team of different clinicians to get us through it and that it would start as soon as the protocols were in place.

And so, for Deb and me the journey begins. We will need to work together. I will have to do the dirty work, but Deb will do what she has always done. She will keep me honest when I’ll want to be lazy. She will be my medical transcriber when I cannot listen to the details. She will be my support team when I get low. Deb will be my rock because she always is. I do not look forward to what lies ahead, but I do know it’s the only way to come out whole.

November 8^th (Time to Fess Up)

This past week started with a battery of tests. I endured a CT scan and an MRI. In addition to those scans, my mask impression was molded. This mask will hold my head in place for the radiation. Tuesday and Wednesday were spent with various doctors and OT people who will comprise my cancer team. These appointments gave me comfort, but they also spelled out the reality of the treatment I will receive, now scheduled for two weeks from today. I am trying to be as positive as possible, but I have been cautioned to prepare for what is ahead. Still, there is always hope that I will avoid the worst side effects.

Today, Bailey let us know that one of Jackson’s teachers has cancer. He is asking them questions about it and Bailey thinks that it is time to tell Jackson and Adela about my cancer. Though dreading the point when we would tell them, I also felt that if we were clear about the outcome, they would react well. To their credit, they managed the conversation well. Though seemingly calm, they were not ready to ask questions, and I am sure that they do not fully grasp what is ahead. The key to the conversation was that they know I will survive but need to be prepared for days when I might not be myself.

November 9^th (The Tumor Whispers)
Just some thoughts today. This morning, we went to church, and once again I was struck by the generosity of people—the way they care so deeply for others. I find myself feeling unworthy of the kindness and concern our friends show. I tell them I am fine, and that is true. This cancer does not shout; it only whispers, reminding me quietly that it is there, though it leaves me mostly pain-free.

Still, that quiet presence weighs on me. I find myself anxious, waiting these two weeks for treatment to begin, and wondering—if I feel fine—why I need to do this at all. Ironically, today’s sermon was about living in the moment, or at least that is how I heard it. I am trying to do just that.

But the truth is, this cancer is distracting. It pulls at me whenever I let my guard down, its whisper tugging me away from the moments that matter most—time with my grandchildren, my children, my friends, and especially Deb. For them, I need to be present. I need to keep pushing the cancer aside.

November 11^th  (Patient in Waiting)

Treatments are set to begin on the 24th. For now, the waiting is weighing on me and causing anxiety. Though we have been walked through the procedure, introduced to the multiple specialists, and sternly warned of the side effects we need to prepare for, it still seems a huge unknown. My cancer seems almost minor when it is described, but the treatment seems so more than minor. I think it is that we have never been told what would happen without treatment. My assumption is that the tumor would slowly take over my ability to eat and likely my ability to speak. Entertaining the idea of refusing treatment would be selfish and a cowardly act. Thus, I prepare for the chemo and radiation knowing full well it won’t be pleasant. I can only hang onto the possibility that I can skip many of those side effects.

November 13^th  (To Eat or Not to Eat)

With treatment still two weeks away, we have already been to countless doctor appointments, with yet another more unpleasant one coming today. I have been warned how much the treatment will impact me and how drained I will feel at the end of them, and yet, it only leaves me confused. How can something that barely impedes my daily life, create such a disruption in Deb’s and my life?  Shouldn’t I be feeling more pain? At the most I am only experiencing some discomfort. It somehow tends to leave me feeling guilty.

Today I will see a doctor about the placement of a feeding tube into my stomach. Though they say it is a precaution, they have been insistent on its need. The thought is unpleasant at best, but I am committed to going through with it. I have to trust the doctors when I am told that at some point it will become necessary. I also do it for Deb. I sense how much she is worried about this aspect of the treatments. If it reduces that fear, then I will get over my psychological resistance and get it done. Just another step in this journey.

November 14^th  (Battling Emotions)            

Yesterday’s appointment went well and gave me some clarity that I have been looking for. We went in assuming we would be set up for the feeding tube I dreaded. We left deciding I would wait until and if it became necessary. The doctor was very empathetic and opened the conversation with a question. “How was I feeling about the procedure.” She went on to let us know that her position was not to be preemptive, but rather watchful of where my ability to eat was heading. This was a relief. I now know I can wait without disrupting the treatment and I have a much better visual on what the tube even looked like, i.e., much smaller than I had envisioned. Before we left, she gave me one more piece of advice. I need to stop referring to my cancer as minor. It may be curable with treatment, but it is still cancer, and cancer is not minor. I have been feeling both guilty and selfish, guilty, feeling it doesn’t deserve this attention, and selfish because I do, at some level, like it. I have decided on my answer to the “how are you doing” question; I don’t feel bad enough to be sick, but not well enough to feel good.

November 16^th  (Who Turned Up the Volume)

It could be my imagination, or the tumor has become more noticeable. Or it could be something else altogether. I feel more pain in my jaw and right side of my head. Little stabbing pains that linger for a while before they go away. That, or my mind is distracted enough to not notice them. That pain in my or the poke behind my ear. More so, the chicken bone feeling when I have that last bite too many and swallowing starts to hurt. None of these are so big as to deter my activities, but still not small enough to ignore. This tumor simply seems to be speaking a little louder as time goes on and harder to pretend that it’s not there.

November 20^th  (Conversations and Revelations)

Today, I received this email from my sister:

These are various affirmations that I read every morning.

I Thought they might resonate for you heading into next week and the weeks ahead.

1.  “I am the Lord your God, who holds your right hand, and I tell you, “Don’t be afraid. I will help you.”

Isaiah 41:13 NCV

2. Dear God, I will quit wringing my hands and place them in yours for you to hold and guide me.
3. Fear is what if……faith is even if
4. Be brave, be strong, be bad ass

Sending love and hugs and positivity

I replied with this and figured I might as well include it in my journal.

Though I will likely adhere to the first three, I resonate with number four. I have been struggling with two conflicting emotions up to now, guilt and selfishness. I was blaming the guilt on the cancer and the selfishness obviously on me. I have referred to “my cancer” as minor, more or less the “common cold cancer.” The guilt is due to feeling that this is minor, so why all the fuss, so why do I even feel compelled to tell people I have it? The selfishness comes from kind of enjoying the concern and love I get from everyone. One of the multitude of doctors and clinicians involved, actually the one I saw only a few days ago, chastised me for referring to my cancer the way I do. She told me cancer is cancer, yours is fortunately curable. She reminded me that at the end of the day, it’s still cancer and untreated, it would still kill me. This helped, somewhat, I could now get angry at my cancer, but the guilt doesn’t go away. Today, I met with one of the planners I had trained. He survived cancer that he had as a kid. He told me that even all these years later, he still feels guilt any time he speaks with someone about his cancer. Turns out it isn’t about having had cancer, it’s that he survived. At least I have a better perspective on guilt but feeling, even knowing it might never go away. 

I’m not sure why I dumped all this on the beautiful sentiment of your email, but internalizing all of this leaves me wanting to vomit it back out once and a while. I apologize, but you are someone I believe understands me better than any of our other siblings, and I trust you. If one doesn’t want to deal with emotional messes, it is best never to be trusted. 

If you are still reading, I love you and really do appreciate your concern and encouragement, and now I feel selfish. While I am at it, I might as well be bad ass too.

It has been like the, I have my days where things are fine and then this anxiety creeps in. At those junctures, anyone unfortunate to have asked how I feel gets this unloading of my emotions. There is this void between the “How are you?” and the “How do you feel?” version of that question. There is such a big difference between.

November 23 – 24 (It Begins)

T Day! Later this morning I will get the first of my thirty-three days of radiation. Chemo will be introduced on day three and follow one day a week from that point until the end of the cycle.  The fact that it is 1:30 am as I write this, speaks volumes on my ability to sleep lately. It is the unknown that is distracting me and causing the up and downs in my mood. I have been given the list of side effects, but which ones will hit me? How much control will I really have? I tell people I am optimistic, but the reality is that inside I have the dread of the “what ifs.” At least today I will get my first taste, though it will likely be more about how it will go as opposed to what it will do, what it will feel like, how will I react?

On a side note, I write myself notes reminding me of what I am doing and what needs to be done. I seem to be forgetful these days leading up to the treatment. At times I find myself struggling to find the words to just complete a comprehensive thought. I blame this on a combination of the drug I am taking, the distraction of all of this, and likely the tumor itself. It can be frustrating. It is even more frustrating for Deb as it is she who must deal with me daily.

November 24^th  (Ramping Up)

When I was diagnosed, the doctors asked me to keep track of the cancer. It was important in their treatment that I keep them informed of my pain types and levels. With treatment starting today, I wanted to look at how things have changed since this all began.

When this cancer first showed up, it was almost unnoticeable. It started with discomfort when I swallowed stickier foods.  Then I began to feel pressure in my ears and problems hearing clearly. I was able to ignore most of it because it was slight and not out of the norm. A cold coming on is what I was thinking. As of the last two weeks, it has become much more noticeable. The episodes of pain are a bit more intense now and more varied in where I am feeling them. The hard ones to ignore are the toothache pain and the increased pressure on my ears.  In short, what started as a whisper is getting louder. It seems like the tumor thought I wasn’t paying attention and is turning up the volume.

November 24^th (One Down a Lot to Go)    

Relief! At least it was a relief of sorts. Treatment went well and I now know what it entails. Other than a very confined 20 minutes on a scan table, it was tolerable. We met with Doctor Burr after the procedure and as he answered our questions we began to feel a lot better about the prognosis. My biggest concern was the pain I am currently experiencing, especially the sharp tooth-like pain in my jaw. He assured us that it was indeed the tumor referring pain to the nerves in my jaw. That tumor was also causing the pressure pain in my ears; the reason I had come in before the tumor was even discovered. Dr Burr then walked us through the upcoming weeks and the pain management and protocol they would be administering. We left with a much more hopeful outlook and that is a relief.

November 25^th  (Strap Me In Scotty)

T-31 and counting. I had barely sat down in the waiting room, when I was taken to the radiation room. I know this will become routine, but for now it is still a strange process. I climb up on the table, laying my head back in the special head rest, molded to perfectly fit the back of my head. Next comes the mask. It was created from a sheet of plastic form fitted around my face, head, and shoulders. The thing looks like a huge Freddy Krueger mask. Quite attractive. The mask is then placed over my head and snapped to the table. I am now locked in place and will spend the next 15 minutes being dosed with radiation. As I lay there, I visualize the radiation burning through the tumor. At some point, I begin to imagine that I can actually feel it.

I find it strange. I have been conditioned to think of radiation as deadly. There are these images of Chernobyl, Japan, and Three Mile Island, none of them comforting. Yet here I am, soaking up radiation every day for the next eight weeks and that’s a good thing. Science and technology are incredible. True, as long as I don’t end up glowing in the dark.

November 26^th  (Stir in Some Poison)

T-30 and holding for a day. Only fitting that on a cold, windy, and snowy day, I get my first round of chemo. As I take my seat in the cancer waiting room I can’t help but look around the room at the people waiting this morning to get their chemo treatment. I have a deep sense of sadness and worry about the ones that, who unlike me with the “good” cancer, are fighting through a cancer that doesn’t always have the desired outcome. Strangely enough, in that same sense of sadness comes this feeling of brotherhood. We are all members of the same group, “The Cancer Club.” I look forward to more times of hearing the bell and knowing that another  member of our club, has been accepted to “The Survivors” club.

Yesterday I referred to the strangeness of being dosed with radiation. If it were not controlled and laser focused on the target, it would be, in any other setting, lethal. Today, they added poison to the cocktail. As I watch, the nurse puts on a protective gown and then hangs a double bagged serving of the chemo to my intravenous pole. She is cautious with good reason. Simply put, chemo is poison. As it drips in, I am again amazed at what science has accomplished in the medical fields. Absorbed in nature, too much radiation will kill. If poison gets into the system, it too can kill. But in the hands of my doctors, specialists, and nurses, the only victim of this deadly recipe will be my tumor.

It is only fitting that as tomorrow is Thanksgiving, I have some people to thank. For all the innovators and researchers that develop these cancer protocols, I say thank you. To the doctors who stay on top of all that research to better treat their patients, I thank you. To the nurses who practice skill in their care and understanding in their eyes and their words, You are saviors. To my spouse, Deb, who is always at my side, taking notes, keeping me straight, making me eat, I love you. And last but never more than a silent prayer away, I thank God for providing all of these care givers, guiding the hands of the doctors, inspiring the researchers, and for being in this with Deb and I.

November 28th (Nod to Stanley Kubrick)

T-29. Today, as I return for radiation dose number four, it is all becoming routine. A few minutes in the waiting room then down the hall and into the “chamber”. I slide unto the table and wiggle my head into the custom headrest. Next comes the mask and as they fit it snuggly around my face, head, and shoulders I hear the snaps lock it in place. At that moment, I feel like an astronaut being prepped for a flight into deep space. I think about playing out that fantasy in my head while the whatever it is, whirrs softly as it circles my head, “Hal …. open the door”. Then fifteen minutes later, I hear the welcome voice of the technician as she reenters the room and let’s me know we are finished. Hal has opened the door. For those of you to young to remember or old enough but never much into sci fi, a shameful nod to “2001 A Space Odyssey.” And so concludes day four of treatment. The next two days are mine to rest and regroup and then it’s back to the routine.