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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.

If you want to follow this blog, sign up on the right. The list is separate from SingleDad's. If you want to read from the beginning, start here.

And by the way, cancer sucks.


Words of wisdom, or not, for the Thanksgiving holiday.

Yes, I am thankful that I am still alive. I am thankful for the incredible support from Inanna.

A quick check of on-line dictionaries and I find that yes, unthankful is a word.

not feeling or showing pleasure, relief, or gratitude.

There is a lot I am unthankful for as well. I sit here at the end of two rounds of chemotherapy. I go in on a Monday and get blood tests, two hours of infusion and go home with an infusion pump for 46 hours of continuous further administration of chemo. A visiting nurse removes the pump on Wednesday afternoon. Eleven days goes by with no chemo entering my body, just chemo continuing to fuck me up. Did that twice, going again this Monday to start round 3.

The first round went fairly well, minimal side effects. The second round, not so much. Cold feels like an electric shock, queasiness is Bob to my Leo …

I have a taste in my mouth that never goes away. If it was chocolate or coffee, I could deal. It is more like a cross between yeech and blech. Yes, I have tried mints, citrus fruits, alcohol, Altoids, pizza, licking random walls, and smothering myself with a pillow. Did you ever notice that you can’t smother yourself with a pillow. Why is that?

I spend a good amount of time in bed because of the fairly pervasive tiredness. Ginger is my best friend.

No, not that Ginger, besides I was more of a (I Dream of) Jeannie kind of guy. Ginger tea or crystallized ginger, and sublingual marijuana hold it at bay, sort of. I do take some of the meds I have when it gets bad, but that is not too often. Most of the time it is like annoying background noise. Any quiet moment I notice that, well, I am wondering where the railing is in case I need to bend over it and toss my cookies.

There are wonderful people in my community who have brought food to the house or send restaurant gift cards, etc. I cannot say how wonderful this really is … my appetite is all over the map but it takes that much more off Inanna’s plate, and that is really important. I am dealing with the brunt of this physically, but for her there is the mental / emotional part. She has trouble seeing me hurt. And, for whatever reason, she surely does not want to see me die. Lightening her load in any way is so appreciated.

I mentioned in a previous post that my CEA was 31 in the beginning of this journey. This is a blood marker for my tumor, one wants the number below 5. My was 31 because, well, I had a cancerous tumor. After chemo-radiation it went down to 19 or something like that. The doctors had hoped for a lower value, chemo-radiation was not as effective as one would hope. We now test the value once a month, the first was the first day of post-surgery chemo, six weeks after surgery. The doctors were hoping for five, I was hoping for zero. It was 1.6 which is wonderful (it will never be zero). That basically means that I don’t have a rouge tumor growing somewhere from the same cancer. Yes, I still have stray cancer cells floating around (like seeds) and the current chemo is designed to get rid of them. But that news was great. It will be tested again this Monday.

Mom came to visit for Thanksgiving. My sister (lives locally), Inanna, our two girls, mom, and I all went to my sister-in-law’s for dinner. She is an incredible hostess (and kudo’s to her husband as well). There was one toast, and it started with appreciation that I am still alive. And there was turkey. Go figure.

I am trying to keep busy to distract from the side effects. One other one is that my butt-hole still hurts. Not awful, but yeah, it just hurts. I can’t blame it, but I can curse it. And I do. Maybe this is where the expression “fucking asshole” comes from. I do find it ironic that I was never one into passively figging but now my life is consumed with it’s constituent parts.

I am unthankful for

  • 6 more chemo cycles to go
  • medical science’s level of barbarism
  • the accident last night at 3 am, let’s just say it shit-the-bed
  • the pain in my ass
  • what this is doing to those I love and care about most

I am thankful for:

  • Inanna
  • a cea of 1.6
  • two chemo cycles down
  • friends and even some people I don’t know for their kindness and support
  • medical science, no matter how barbaric it may be
  • waking up every morning, being a man or not
  • for whatever reason, I look better than people expect (no clue what they expect)

Yes, I know, it could be worse. But it could be a hell of a lot better, no?

We go on. It is better than dead. I can survive another 6 rounds of chemo I am sure. And if it ups my chance of long term survival (dare I say cure?) then it is worth every moment of queasiness, every bit of exhaustion, and an annoying butt-hole.

Be thankful. All in all, I am.

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“I think of my body as a side effect of my mind.” ~Carrie Fisher

The whole concept of side effects is bizarre. I guess nothing good comes without something bad. A typical list for just about any medication or procedure looks something like this:

Side effects are uncommon, and include headache, nausea, stigmata, vomiting, death, dizziness, vaginal ejaculations, dysentery, cardiac arrhythmia, mild heart explosions, varicose veins, darkened stool, darkened soul, lycanthropy, trucanthropy, more vomiting, arteriosclerosis, hemorrhoids, diabetes, virginity, mild discomfort, vampirism, gender impermanence, spontaneous dental hydroplosion, sugar high, even more vomiting, brown, your mom, and mild rash.

When I was warned about the side effects of radiation (and had to sign off that I acknowledged them) I was told that colorectal cancer was a potential side effect! I was lucky, I did not get too many side effects during the chemo-radiation portion of my journey. That bodes well for the chemo that I am starting on Monday.

The surgeon went over a list of potential side effects from the surgery when I had to sign that consent. It was a typical list including infection, death, impotence, blockages, etc. Pretty much a list of awful things but seeing that the alternative would be death by cancer, I smiled and signed.

I got hit with a good amount (well, a bad amount actually) of side effects after the surgery. I had two blockages in my small intestine that caused all sorts of other issues. It was fairly awful but I made it through, and that is pretty much all that counts.

One of the side effects that was emphasized a bit more than the others during that early visit was impotence. In case you are not sure what I am talking about …

  • Erectile dysfunction
  • 180 degrees shy of heaven
  • Performing with Flacido Domingo
  • A few parts shy of an erector set
  • Sch-wing and a miss
  • Not rising to the level of impeachable offence
  • The Null Monte
  • Disappointing Miss Daisy
  • Taking the gold at the Lake Flaccid Olympics
  • Ascension Deficit Disorder
  • Bouncing the Check of Love
  • Less-than-Magic Johnson
  • All Doled up with nowhere to go
  • Welcome to Flaccid City. Population: You
  • Serving boneless pork
  • Unleavened Man-Bread

Impotence is the inability for a man to get and maintain an erection. It is also known as erectile dysfunction and can impact a person’s ability to have satisfactory sexual intercourse.

The doctor did mention that we now have drugs that can help with that if it comes to fruition since the cause would be nerve damage from the surgery.

No big deal I thought. Well, to be clear, it would be a big deal, but I mean ok, I can handle that, um, I mean I can deal with it. And so can Inanna. After all, better limp than dead I always say.

I have been lucky, I only dealt with not rising to the occasion once, and having just turned 60 that is pretty amazing. I was a young college professor and had three wisdom teeth out one morning. That afternoon the dean’s very enticing secretary came by to check on how I was doing. One thing led to another and, well, I found out that heavy pain medications in those days had a direct effect on one’s (ok, my) ability to rise to the occasion.  I actually found it very funny (really). Not sure she did, she never checked in on me again. It was all probably for the best since I was not tenured and the dean was not real fond of me to start with. Anyway, I digress …

There is something about having a hard difficult time recovering from colorectal surgery, dealing with a stoma and ostomy bag, and in general one’s mindset with all of this, that keeps one’s libido in check. Whether or not I had this particular side effect was not much on my mind. Until it was back on my mind. I hit me hard as the thoughts rose in my mind, hardening my intent to figure out if my stoma was going to be the only thing sticking out from my body for the rest of my days.

I thought about it for a couple of days, willing willy to show me his stuff. Nothing. I revisited the fantasies of being Carlo Ponti … to no avail. I spent an hour in my shrine to Brigitte Bardot … nothing. Figuring the usuals did not work, I tried reverse psychology and Googled “naked Kardashians” … that only reignited my nausea side effect. Ugh. Yeah, a big nothing.

That evening I really needed to know. I took off my big-man panties and decided there is only one way to find out.

The scene was caught on one of the many nanny cams in the house. Here is the footage of me and Inanna the other night.

Great singing voice she has, no?

I guess if there is one side effect I could choose not to get, other than death or stigmata, this would be high on my list.

Yes, it’s a big deal. Yes, you can all stop worrying about it, I have.

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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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