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Many of you know me as SingleDad from my blog Disabled Daughter. For six years I blogged about my life as a single father with two severely disabled children. Pearlsky lived with me; David was in a residential school. I stopped blogging when life became difficult for reasons known by the followers of that blog. But here I am. No longer a single dad, and quickly becoming disabled myself.

I was diagnosed with stage 3 colorectal cancer on April 24, 2018. There have already been so many events that I want to blog about. Events with me, with Pearlsky, with Inanna, and more.

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And by the way, cancer sucks.

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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Oh man, did that ever suck

I apologize for the silence.

My admission for the surgery was about four days longer than expected. I was finally discharged and was home for a few days; that is when I wrote the previous blog post.

Shortly thereafter my stoma decided to get blocked. Spasms, swelling or whatever in my small intestine due to surgery and caused everything to back up. Needless to say, I went downhill fairly quickly. The surgeon called and had me readmitted to the hospital.

That was a tougher stay in some ways. I really hit rock bottom as they say mentally if not physically.

After close to a week I came back home, again. Things seem to be working (at least between my mouth and my stoma) and I am trying to get back to life. For a while at least.

I will fill in the gaps as I now get ready for some heavy duty chemo in two weeks.

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They took part of my colon, I gave them a piece of my mind.

Actual email, only names have changed.

I was a patient on Rockman 5 from September 13 until this past Friday, September 21, 2018 following colorectal surgery. I would like to take this opportunity to share some thoughts about the care I received as well as your staff in general and in specific. In an effort to have some credibility, I will tell you that I have been on an unusually high number of hospital floors and wards partially because of my two severely disabled 25 year-old children (four hospitals just with them), my own and close family member’s hospitalizations, and some of my past professional trainings.

As a firm believer that it is fairly easy to be an okay nurse I am never surprised that many floors and units are mainly composed of okay nurses. They usually (hopefully) have a couple of good nurses and few (if any) great nurses. Part of that is unfortunately due to the Peter Principle.

I found very few okay nurses on Rockman 5. Not only do you have a very high percentage of good, and even great nurses the staff from “top” to “bottom” are also of high caliber. The PCTs on the floor are equally dedicated, involved, professional, and more. To start with my first (and potentially only) complaint, the staff photograph-board was removed the day before I left. I had planned on taking a picture of it so I could attach names to this email. I will do my best, but my mind was not totally clear last week.

All the nurses showed professionalism and when an issue ever came up that they were not 100% confident about, they would return with someone better acquainted with the situation. When my IV was removed and Kathy was dealing with what I now believe to be phlebitis from one of the IV meds, the next thing I knew she had members of the IV team in there. Is that what should have happened? Yes, of course. Is that what would have happened elsewhere? Not always. Kathy was my nurse for multiple shifts and is absolutely one of your vital gems, if not yet a great nurse, soon to be. She helped with any and all issues, professionally and competently. A wonderful demeanor, empathy, and personality, obvious knowledge and the appropriate level of confidence.

Emma is another nurse I need to mention. She is simply incredible in many of the same areas as Kathy and her education is very impressive. She is kind, considerate, intelligent, professional, empathetic, and hopefully she will not be swallowed up by the Peter Principal and will continue to offer such a high level of care directly to patients.

I was given a head’s up about Annie. I was told I would like her and that she was one of the most experienced on the floor (in terms of tenure). During her shift I had a problem and related it to Annie. A doctor became involved and, in my opinion, acted not only non-professionally but immorally. I do not want to get into that in this email (I may file a complaint) but it turns out that Annie pursued and found a solution to the issue. Words cannot explain what that did for me, mentally and physically, while in the midst of dealing with an NG tube, post-op stress and discomfort, etc. Another great nurse, for so many reasons.

I was a bit taken aback at the start of one shift when it appeared the hospital had sent a “financial guy” to my room. No, it was Willie 😉 I am sorry that he was only on one shift during my hospitalization, I would have enjoyed getting to know him a bit. Definitely making a special request for him to be one of my nurses next time, but then again, hopefully there is no next time.

Alexander was another nurse who deserves kudo’s. Between his knowledge of his profession, empathy, caring, and ability to anticipate what I may need, there is nothing to say other than he, too, is a vital member of your team. Vital to patients at the very least.

If you are wondering what it takes to be a great PCT, just shadow Pamela for a day. What makes the difference between an okay PCT and a great PCT? I can start by saying empathy and caring. Innately understanding people and spoken and unspoken cues. Add simply doing your job well, efficiently, and anticipating what may be needed next. She is as essential to your team as any other member and my time on Rockman 5 would have been more difficult without her. It would be wonderful if she moved on to become a nurse, but actually, it would also be less than wonderful to lose such a PCT.

The entire staff appears to work together as a cohesive team. I have no doubt there is a lot that I did not see, and shouldn’t, but what I did see is not often seen in a team this size. The staff enjoy their respective jobs, they have respect for each other, and actually are a team. This works to their benefit, the hospital’s benefit and to the most important benefit in my opinion, mine.

That said, there are two PCTs who could probably benefit from a very different type of work, one doctor I very well may file against, and a nurse or two who would benefit from some retraining, but isn’t that always the case?

Whatever you are doing, it is working. And others are not mentioned because you took down the photo board and I can not be sure of names and actions.

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Best sleep I have had in a while

I went into surgery Thursday morning. It was around 7:30 AM when they wheeled me away. I don’t remember much after that (actually nothing), maybe because I was sedated immediately.

The surgeon called Inanna 7 hours later. Surgery went very well from his point of view but the extended time was due to the radiation damage to some of the tissues. The reason for the 8 weeks of nothing between chemo-radiation and surgery is for the tissues to heal otherwise the surgeon is dealing with somewhat withered problematic tissue. For whatever reason, mine was not as healed as expected so it complicated the procedure somewhat. That aside, overall the surgeon was very happy. Me? I was asleep.

Around 5 o’clock in my room the nurse came with my Lopressor, a heart medication. I asked her why and she double checked the order in the computer. She said it was one of the meds I take at home.

No, I don’t take Lopressor, I have no idea what it is, and I am refusing the medication.

She returned about 20 minutes later and said it was ordered “in error.” That made me feel better.

At some point that evening I was sleeping. A young guy came in and woke me by saying “blood pressure!” I lifted my arm a bit and felt the cuff go on. With my eyes still closed, the cuff tightening, there is a scraping at my teeth. What the fuck? I knocked it away and opened my eyes. He then said “temperature.” Right, asshole.

I quickly learned that they take vitals every four hours, round the clock. That’s fine. I also learned that every other staff member says “Vitals!” when they come in, except one, the aspiring Christian Szell, DDS. And this is not my foggy memory or my then drug induced state, it is how he did it every time.

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“There is nothing like staying at home for real comfort.” ~Jane Austen

I am home. I got here yesterday, just before dinnertime.

It has been a tough road. Had everything gone smoothly I would have been home four days earlier, but alas, it did not work out that way. As everything in life, this too has passed and here I am.

That said, I was on the phone with my surgeon at 2 AM discussing if I need to ambulance back. We decided to wait it out under certain parameters; today is going well.

Yes, I have a lot of posts to write from my notes and they will soon come fast and furious. I will give you the thirty second summary here:

  • Surgery went two hours longer than predicted, but went well.
  • Radiation did a heck of a job on my tissues, hence the added two hours.
  • Good thing I was awake and questioning the first hour I was in a room. “No, I don’t take Lopressor, I have no idea what it is, and I am refusing the medication.” Ooops, a medication error. I guess they do really happen.
  • A day of really nasty retching ended with three attempts at an NG tube, some relief …
  • Only to discover a blockage elsewhere to be resolved.

I could go on, and will. I’ll discuss those items and more in the next few days as well as living with a temporary ostemy bag. There is one thing I do want to say clearly though…

There is an incredible staff on that surgical floor. The doctors, nurses, assistants, the entire team is top notch. I have spent 25 years with both my severely disabled kids in and out of a total of four hospitals. I have had personal interactions in the handful I and those close to me have been in over the years. I have worked in emergency rooms, etc. This staff was (is) top-notch and does show some of the advantages of a big city, Ivy League medical teaching hospital.

So you will be reading about the good, bad, and ugly. And I do not have pathology reports yet, so don’t know the odds of my cancerfreeness.

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