All the world’s a stage

The day I left the hospital for the second time was the same day I was scheduled to have my follow-up appointment with the surgeon. We agreed to reschedule that, and I never heard. About a week later I sent a message to both the surgeon and my chemo doctor that I had no appointments scheduled and I don’t know when chemo was supposed to start.

Two days later I got a call and we scheduled an appointment with both the surgeon and the chemo doctor.

The first words from the surgeon were:

So what is my name on your blog?

Wonderful. I told him “John Hunter,” and he smiled, then got down to business.

He asked how I am feeling and if I have any pain. I told him that I really have not had any pain since the surgery except for the fact that my asshole hurts all the time.

The good news is that I am in remission.

remission  (reh-MIH-shun) A decrease in or disappearance of signs and symptoms of cancer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body. ~National Cancer Institute at NIH

Both doctors agree that a dozen years ago they would have stopped treatment at this point.

The pathology report had several important findings:

  • Clean margins – the surgery removed the entire tumor
  • Four lymph nodes were affected
  • The tumor did not respond as well as hoped to the chemo-radiation

So what does this mean? A lot, actually. If five or more lymph nodes are affected they get more concerned. I had four. The fact that the tumor did not respond as well as we hoped means that we need to be a bit more aggressive with the next step to eliminate any cancer still hanging around in my body.

Additionally, now that they have a direct analysis of the tumor and surrounding area (as opposed to imaging) the original staging determination is re-visited. I was told that the cancer was Stage IIIB it has now been staged at IIIC.

You may ask what this means for me? Actually, it does not mean shit (so to speak). Technically it is how far the tumor affected the layers of the wall of the colon, the lymph node involvement, etc. What does it mean for my survival? Nothing. Unless there is 0% survival, it means nothing (and there are very good survival rates).

Taking all this into account, the team of doctors have decided that I will have four months of chemotherapy. Because the tumor’s response to the 5-FU sucked (my word, their implication) they want to start sooner rather than later and be fairly aggressive. I will be starting chemotherapy in a week.

The treatment is called folfox6 and consists of three drugs, one of them being my friend 5-FU. I will go in on a Monday and get a blood test then an IV for several hours. After this I will get my friend the pump back and I can go home while getting a stronger dose of 5-FU for the next 46 hours. On Wednesday the pump is disconnected and I have nothing for the next 11 days. That is one cycle, it will then repeat for a total of 8 times, 4 months.

I should not lose my hair! My mind maybe, but not my hair. Nausea will be an issue but there are meds (and marijuana) for such things. One of the stranger side effects is that cold will be painful.

Now for the peculiar part—this platinum drug has a particularly unusual side effect, neurotoxicity exacerbated by cold temperatures. Generally, the first thing that comes to mind when I hear “oxaliplatin” is “ixnay on the ice, okay?” This infamous side effect of cold sensitivity can occur within hours of the infusion and typically lasts several days. It usually lessens or goes away completely between treatments, but as the number of cycles increases, the numbness and tingling ordinarily takes longer to dissipate. This may present like typical peripheral neuropathies such as numbness and tingling or even cramping in the hands or feet; however, it’s triggered by cold. So touching anything out of the refrigerator, freezer, cold section of the grocery store, or washing hands with cold water will set off the numbness and tingling pretty much as soon as they touch it. Think about all the things in daily life this affects (cold tiles on your bathroom or kitchen floor, cold hand railings outside, etc.). So educate your patients accordingly. Luckily, the cold sensitivity only lasts for a few days, but it certainly makes you have to think a bit more about normal daily functions.

And it doesn’t stop with the hands and feet. The neurotoxicity can cause laryngeal spasms as well if a patient drinks cold fluids. Just like in the periphery, it typically sets off tingling on the lips and tongue pretty much from the onset of touching the cool liquid. However, it can continue and cause laryngeal spasms, which may make the patient feel like their throat is closing, or have difficulty swallowing, shortness of breath, jaw spasm, or abnormal tongue sensations. (Ixnay on the ice, okay?)

Because this can start quickly, avoid cold drinks even during the infusion. If you have volunteers or helpers checking on patients and bringing drinks or snacks in your infusion room, make sure they only bring room temperature or warm beverages to anyone receiving Oxaliplatin. As for the recent frigid temperatures we’ve been experiencing lately, make sure to instruct your patient to dress warm when going outside in cold weather including gloves, hats, and scarves to cover their mouth and nose to help protect against exposure to the cold air. I have had multiple patients tell me in winter months that the cold air caused symptoms—so bundle up! ~source

I hope global warming hurries up and takes over in the next few weeks …

At the end of the appointment the surgeon wanted to check why my asshole hurts. All the time. (Did I mention that?) With his finger he said that my sigmoid colon was not happy and he could feel it spasming. The sigmoid colon is typically not reachable in this manner, but I am missing about a foot of colon and the sigmoid has been re-positioned and attached to my anal canal. And apparently it is not happy. That makes two of us. It should calm down at some point. Hopefully I will too.

I turn 60 on Monday. I made it and was not always sure I would.

Click here to see the lyrics

You could never know what it’s like
Your blood like winter freezes just like ice
And there’s a cold lonely light that shines from you
You’ll wind up like the wreck you hide behind that mask you use

And did you think this fool could never win
Well look at me, I’m coming back again
I got a taste of love in a simple way
And if you need to know while I’m still standing you just fade away

Don’t you know I’m still standing better than I ever did
Looking like a true survivor, feeling like a little kid
I’m still standing after all this time
Picking up the pieces of my life without you on my mind

I’m still standing yeah yeah yeah
I’m still standing yeah yeah yeah

Once I never could hope to win
You starting down the road leaving me again
The threats you made were meant to cut me down
And if our love was just a circus you’d be a clown by now

You know I’m still standing better than I ever did
Looking like a true survivor, feeling like a little kid
I’m still standing after all this time
Picking up the pieces of my life without you on my mind

I’m still standing yeah yeah yeah
I’m still standing yeah yeah yeah

Don’t you know I’m still standing better than I ever did
Looking like a true survivor, feeling like a little kid
I’m still standing after all this time
Picking up the pieces of my life without you on my mind

I’m still standing yeah yeah yeah
I’m still standing yeah yeah yeah

I’m still standing yeah yeah yeah
I’m still standing yeah yeah yeah

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2 thoughts on “All the world’s a stage

  1. Happy birthday and keep standing!!!! If anyone can tell this cancer to go to hell, it is you! Continue to have you and your family in thoughts and prayers! Please take good care!

  2. sending GOOD WISHES your way not only for your birthday but for everything that follows these next few months…
    i love that your dr is up to date with your blog…keep writing to keep him on his toes……
    your blog always brings a smile to my face……with much fondness…susan

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