» I was going to title today's entry » Moving Back the Oncolytic Goal Posts .. for reasons that will become clear. But that would have been the whiny title, the sniveler's title. The pussy title. And nobody appreciates a whiny, sniveling pussy .. especially when it's a guy.
Instead, today's title is .. well, you see it there .. which I will use as a springboard to discuss these oncologists » The Cancer Killers.
It should be noted that, my experience with cancer, while growing up, with both mom and gramps, was that » following diagnosis, the patient is dead within a matter of months. The kinder and more loving the person, the quicker and more gruesome the death.
Is there a statistical correlation between kindness, compassion, empathy, and cancer? I have discussed this concept (and the possible theories for reasons behind it) with my shrink during our most recent weekly session.
Not many, I bet.
But before I get into that, and discussing the cancer killers, let me update you on the status of my latest iterations.
Just when you think it couldnt get any more bizarre. Or challenging. Or trying. Or testing.
» The Voice
My VOICE .. it has been a problem, off-n-on, for a week or so. The last time I saw the radiation oncologist, he said » "If your voice doesnt improve by the next time I see you, I am going to look at it."
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[ My voice did indeed improve for a few days, but had again failed by the time I returned to see him the following week. I thought my voice problems were caused by the acid in my stomach washing over my voice box during vomiting, or perhaps even using too strong of a salt-and baking soda solution to rinse my mouth.
Some friends have said that whispering is more difficult. But this only applies to infections known as laryngitis .. not when you have no voice at all .. when the cords are toast. Or at least, dry as toast .. involving nerve damage. ]
I heard him talking to his nurse as he did this, and I tried to remember what he was saying to her .. but I couldnt hear what he was saying all that well.
"Look at that. And look at that," I recall him saying. But I couldnt see the screen that they were watching.
» Nerve Damage
Long story short, he said that my voice problems are NOT expected. Not normal. He also said the words » "nerve damage".
So he has scheduled me for another CT scan (this week) and made an appointment for me to see the head-n-neck surgeon (Dr. Smooth-n-Mellow) .. for him to scope out my voice box. (More cocaine, baby.) Also this week.
"But you're already putting dose there," I sniveled like a third-grade girl.
"But not enough to kill a primary tumor," he said.
"How much more dose are we talking about?" I asked .. watching my oncolytic goal post retreat into the distance.
"Not much," he said. "Only about..."
» Back Go the Goal Posts
And there was the longest pause of my life .. as I watched his eyes as his brain calculated the extra dose (treatments) required. Time seemed to stop. Things got very quantum.
This is week #6 for me. Next week would be my LAST WEEK. This past weekend was tough. I have been throwing up water. My weight is down to
164 » 162 » 159 » 157. I have now lost 25 lbs in the past few weeks. That is a lot of weight for me.
My body feels weak. I realized that there is a difference between 'tired' and 'weak'. But dont ask me to explain it .. because I havent the energy right now.
When I am tired, I feel more tired than weak. When I am rested, after a long weekend, I feel more weak than tired.
It sometimes feels like a big, black size-13 Nazi boot is stomping my face into the pavement. Or at least trying to.
They are kicking my ass. They are kicking the shit out of me.
So it seems like the radiation oncologist is taking forever to give me a number. I am thinking » "Two? Three?"
.. when he says » "Eight."
Eight days would be two more weeks.
Something inside said » "You gotta be fucking kidding me."
"Well," I said, in my lame, pitiful, whispery voice that is hard to hear, "that would suck."
"What would REALLY suck," a friend said, "is if you go thru all this shit and dont kill the source of the cancer."
Back in week 3, I could feel something different in my voice box .. sorta behind my adam's apple, maybe a little lower in the throat. Something dry and raw. It made me want to keep sipping water. To wet the dryness.
» The 360 Degree Arc of the Radiation Machine
And I thought » "Wow, they must really be targeting my voice box." I mean, you can SEE where they are aiming the radiation .. when the thing passes in front of your face .. only maybe 12 inches away.
Three passes of 360 degrees each. Each pass targets a different area. It starts directly behind you (6 o'clock position) and comes up and around before passing right in front of your face (12 o'clock position) and continues on its arc until it again ends up directly behind you (back to 6 o'clock) .. before beginning the next pass ..
.. which travels in the opposite direction. It reverses direction at 6 o'clock. What a machine. You can SEE the shape of the constantly changing, constantly adapting 'hole' thru which the radiation comes. Movable pins/rods continuously adjust and adapt as it moves thru-out its 360 degree arc.
The radiation-dose'er itself (linear accelerator) looks sorta like a 9-inch deep (circular) manhole cover, with a 12-inch by 12-inch square (with rounded corners) cut into its face. The square hole is covered with a thick plexiglass cover.
Directly behind the plexiglass cover is where the pins/rods move .. blocking radiation to some areas, and letting it pass to others. This thing has passed right in front of my face, 12 inches away, every day for the past 6 weeks, so I've gotten a good look at it.
See .. regarding this "nerve damage" .. there are many nerves in your neck, but radiation does not really bother the nerves very much. It is rather the TUMOR that bothers the nerves. Which is why they see a red flag in my voice box.
Up to this point, they have been more focused on » "The bottom third of the tongue and the back of the throat, because that is where 95% of these types of cancers grow."
Back when I first saw the radiation oncologist, he said (something like) » "The ENT surgeon couldnt find anything, but he noted an abnormality on your voice box. I looked at it but was not impressed. But we can't rule out anything."
So they have been looking at my voice box from way back. Maybe now the primary tumor is revealing itself.
» Sculpting Radiation Machines
These new types of 'sculpting' radiation machines (linear accelerators) have only been around for the last decade. Before that, they would cook everything in the general vicinity.
I asked my radiation oncologist » "Because I tested positive for HPV-16, and HPV-16 tumors respond better to radiation therapy, does that incline you to adjust the dose accordingly?"
I let my hand flutter down, like a butterfly landing, as I posed my question.
"No," he said, "but that's a question being taken up now."
Every day, when the 'therapists' come get you out of the waiting room at Moores, to get your daily punch in the mouth .. uh, I mean, your daily dose of radiation, they usually ask how you are doing .. which, if you were to answer truthfully, would be a depressing, whiny response.
So when the girl with the amazing smile came to get me, I told her about the possibility that, now that the end of my tunnel is in sight, I might have to get MORE doses.
"Well," she said as we walked down the long hallway together, "that just means eight more times that I get to see your handsome face."
"Wow," I said, surprised at the seemingly natural ease at which she was able to make me feel better, "you are good. I feel good when I see you." I mean, she didnt skip a beat. An instant response. Very natural.
I also told the main guy there as I climbed up on the table and laid down beneath the 'manhole cover' (linear accelerator). He said, "Well, it's better that they find it now." [ "it" = the primary tumor, the source of the squamous cell carcinoma in the swollen lymph node. ]
After my meeting with the radiation oncologist, where I learned of the possibility of 8 more treatments, the Clinical Trials girls walked me out and actually gave me a HUG before departing. That was very nice of her, I thought. She could see the effect it had on me.
She is usually there when the doctor sees me, or she shows up while the meeting is in progress. They all know how much I like her, so she is always welcome with me. I have praised her lavishly right in front of the doctor and his nurse. I was not making up anything; she totally kicks ass (for me).
» The Clinical Trials Girl Makes a Call
Remind me to tell you the story about chemo #2, where I was stressing about being assigned to a certain nurse who seemed to have poor hand-eye coordination, who had previously left my arm with nasty bruises from multiple failed attempts at setting an I-V.
The Clinical Trials girl made a call and, presto, my favorite yoga nurse girl comes to get me. When I saw the yoga girl come get me, I let out the biggest sigh of relief.
When you are going thru this shit, this cancer treatment, you already have so much shit to deal with. You dont need any more things that can cause anxiety or stress or tension. (I *still* have these bruises today, weeks later.)
There is nothing like a nurse who keeps jabbing repeatedly at your veins, trying to get "good blood return". That is a certain kind of hell. She is like, "This arm doesnt like me," while finally moving to the other. I didnt say anything but thought, "It's obvious to see why."
You want somebody young to set your I-V .. somebody with good hand-eye coordination. And someone who exudes compassion.
» Huntsman Sr Gets Head-of-the-Line Privileges
Speaking of the Cancer Killers and chemo #2 (.. which was postponed for a week until my white blood cell count returned to a safe level .. neutrophils need to be a minimum of 1200 to proceed with chemo [ normal = 1400 to 7,000 ] while mine were only 700, because chemo #1 laid down the smack on my marrow ..
.. where all things related to the blood are produced, such as white blood cells, which fight infection, red blood cells, which carry oxygen, and platelets, which form clots to help you stop bleeding .. tho a week later my neutrophils count had returned to 1300.)
During chemo #2, I got there early and scored myself a nice window seat way in the back (with the yoga nurse, no less).
"The only cancer facility designed by a former cancer patient," he says. (Uh, that would be he himself.)
And I can see how he speaks the truth.
» Lauren Shows Up at CBS News
They do 60 Minutes .. the holy grail of reporting.
The sky is the limit, now. Your folks must be very proud.
Say hi to Leslie Stahl for me.
» Doing What You Do
Ooh, I saw this, too. Nice. You make them look good. They are lucky to have you. I like your lively tempo better in this piece.
I must say .. you look so very comfortable there. So at ease and in-your-environment. (I would be pooping my pants like Robert Duvall in The Judge.)
I'm so happy for you.
» Flirting in the Future
Guns of August Spotted at Moores
By the way, as I was leaving Moores one day, recently, I noticed a man sitting in the lobby, reading a copy of The Guns of August ..
,, a paperback copy with the same image on the cover that I use here. (Beautiful cover.)
He was a third of the way into it. Of course I had to stop and chat for a minute even tho my ride was waiting. Which was difficult because of my voice.
He was only too eager to extol tho book's virtues, and I realized that I had gotten more than I bargained for.
He bid me lavish blessings of 'peace' as I excused myself.
» Birthday Boy
It's kinda funny that I just found you there now .. because Jorge is here again .. rooming in the office, where he likes it best. (There's a big flat-screen TV in there.)
He is the one to whom I said » "Come here and check out my new girlfriend." He is the one who called you "perfect". He turned 23 last week. Smoked his first joint on his birthday (.. to see if it would helps with the seizures.)
Friends say I should try smoking a little myself to do something about this nausea. I've lost 25 lbs in the past few weeks. No appetite. That's a lot of weight for me. There's not very much of me left. But the tumor is nearly gone.
Chemo kills the panther.
» The Surgeon Says
Oh, I saw the surgeon and he found NO evidence of cancer in my voice box. He said it was due to stomach acid "burning" my vocal cords. They still cant find the source. And it aint for a lack of trying, let me tell you.
So he prescribed Prilosec, which I'm supposed to take "30 mins before breakfast." But I dont really eat breaky. I just sip Ensure thru-out the day.
» Results of CT Scan
Update 20 Jan - Met with radiation oncologist today who reviewed my CT scan and found NO indications of cancer in my voice box. I threw my arms straight up. Touchdown! Score!
I am soo happy that I wont need 8 more punches in the mouth.
He also mentioned that he noticed "good response" to the previous lymph node tumor (.. from the radiation / chemo) .. meaning that it has shrunk to almost nothing.
He said, after treatment concludes, they will bring me back 4 months later to take another look at it. (It = the lymph node tumor.)
<end 20 Jan update results of CT scan>
» Probably the Toughest Treatment We Have
As they were helping me off the table today, the head "therapist" (radiation machine operator) .. the older guy who is in charge of scheduling .. said, "You're coming down the home-stretch, now."
"They're kicking my ass," I admitted, once up on my unsteady feet.
"It's a tough treatment," he said. "Probably the toughest treatment we have, because it affects so much of your daily life." (the mouth / throat / eating / swallowing / talking, etc.)
I found his comment interesting.
The new 'mask' that they made for me .. because I lost so much weight (in my face, too) .. is so freaiking tight that it feels like it is cutting off circulation to my head.
They let me bring the old one home. I have it here.
I hear lots of other patients talking about how much they hate the mask. Some patients require drugs to wear the mask. Xanax. Claustrophobia.
» Met With Chemo Doctor
Met with the Chemo doctor today. She said that "the hump" doesnt come until 3 weeks AFTER treatment ends .. because there is a "building up" of effects.
She said the next 3 weeks will be some of the roughest, physically.
Final chemo next week.
They checked my blood today. My platelets are low. Blood count nadir for this chemo occurs "14-23 days after infusion." Today is day 16. But white blood cell count is okay.
My blood pressure was low today (89/60). Unsteady on my feet. She wanted to give me I-V fluids, so I dont fall and crack my coconut .. but I talked her out of it. [ I am so tired of I-V's. ] I started doing jumping jacks in the office. "Look, I'm fine. Wanna see me do some push-ups?"
Tumor is "less than 1 centimeter," she said. [ 2.5 cm per inch ]
I like her a lot. She has an impressive yin-yang of gentle-compasion vs tough-strength. Not an easy gap to bridge. A Detroit girl. She totally kicks ass.
Sneezing today .. feeling worn out.
To be continued.
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