From disabled daughter to disabled dad

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.

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“You have cancer”

I noticed when I went to the bathroom that it started feeling a bit different; I did not give it much thought. Then one day I saw a bit of blood. Ugh. Figuring maybe it was an internal hemorrhoid or whatever, I held out knowing I was going to see my internist in a few weeks.

She put in an order for an “urgent” colonoscopy. She said that they label them “urgent” if there are any symptoms.

The lab called about two weeks later to schedule. I asked if insurance covered it and they assured me it did. When I told them I was having insurance issues over the doctor visit, they said I could call the billing department and they would do an insurance check or something. I did that to make sure … The billing department said they would run it by the insurance company and get back to me in a few days. They called back and said that I was not covered and the test would cost me between seven and eight thousand dollars, out of pocket. Screw that. So I waited and tried to figure out what to do.

I still occasionally saw some blood and what-have-you. And then I remembered Dr. Z. His brother was my internist for about 30 years and he was the head of GI in our big city teaching hospital. He did my colonoscopy about 12 years ago, I would see if he was still doctoring. Yes he was, but not seeing patients so to speak, only doing procedures. But his hospital takes my insurance with no issues. I scheduled a test. Ideally, at my age, I should have a test every 10 years or so.

In case you don’t know, a colonoscopy is a procedure where the doctor takes a camera on the end of a long flexible wire/tube/thing (sort of like a selfie stick, but nothing like a selfie stick) (and no, don’t use a selfie stick) and, well, looks inside your colon. Your colon ends at your butt, and that is where the doctor starts. Your colon needs to be clean, and that is the preparation. The night before you either take a couple of pills and drink a lot of water, or some other similar method chosen by your doctor. You then find yourself spending a good amount of time on the toilet if all goes well. For whatever reason, I barely went once. I called the lab in the morning before going and they said to drink some more and come in. Again, minimal results, but ok, easy enough. I took public transportation to the hospital as you must have someone drive you home.

On the gurney, wearing a hospital gown, I got an IV and the doctor comes in. Some pleasantries and then I tell him that over the last few months I passed a bit of blood and it feels like I have internal hemorrhoids. “We will find out” he says, and I am sedated.

As I start to wake up from the sedation Dr. Z. looks at me and says

You have colorectal cancer. It looks to be primary, and you will probably need radiation, surgery and a temporary colostomy. I am sure the biopsy will confirm this. I will get you an appointment with one of our best surgeons.

Still mostly sedated, I did not say much of anything. About twenty minutes later I went to the bathroom to change into my clothes. When I came out, Inanna was waiting to take me home. She said the doctor already told her I had cancer.

It was a very quiet ride home.

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“To be optimistic about something that is absolutely unknown to you is unfounded.” ~Rachel Cusk

The two-mile drive home felt like an eternity.

I decided right then that I would not tell my mom and sister until I knew a lot more, or until I had to, and furthermore I decided I was not going to do any research on the Internet. Period.

Growing up, just about anyone I knew that had cancer, died of cancer. I have cancer. Hence, logic and rationality be damned, I was going to die of cancer. And, actually, I very well may die of cancer.

The car was very quiet. Inanna did not know what to say and I am sure she was trying to process this as I was. We had very little information, only knowing that we would have the biopsy results in a few days and a surgeon’s office would call this week.

When I got home, the first thing I did was kiss Pearlsky (my 25 year old severely disabled daughter) and lie down on my bed. It was quiet, and I have recently learned that quiet is not so good. What will happen to Pearlsky when I am gone? Am I prepared to die? There is so much to do logistically. And what about my mother? How will she deal with this? I can’t believe this is it. Fuck.

The next evening I gave a talk in a school district about 40 minutes away. The drive home was on a dark somewhat winding road, and it was raining. I was trying to follow my GPS, watch the road, and not get killed. Yep, and not get killed. The car was quiet, the road was dark, and I was thinking of the irony of that. Anyone of us can die at any time, and on some level we know that (at least after age 16 or so, until then we are invincible). The difference is, I probably know how I am going to die, and I have a better idea of the time frame. Logically I knew that I actually knew nothing, other than I wanted this thing out of me. Yesterday.

Dr. Z called the next day and asked how I was doing. “Crappy” was my only retort. He told me the biopsy is back and that the tumor is “low grade.” “Is that good or bad?” I asked. “Definitely better than high grade. The surgeon’s office will call soon.”

Ok, the first good news! My cancerous tumor is low grade! YES! So I pick up the phone to call and tell mom the good news … then I remember she does not know the bad news. And I am not about to tell her. Oh well, I text Inanna and distract myself from thinking that every ache and pain I have is a secondary tumor.

This is Dr. C’s office, from the Colon and Rectal Surgery Group. We have an appointment scheduled for you for May 9th at 2:00 with Dr. C, Dr. A and Dr. P. You are scheduled for a CT scan at 8:00 AM the same day and an MRI at 10:00.

I went with my closest friend to her first meeting with the surgeon for her breast cancer. I remember it well, the radiologist, the surgeon, and the reconstructive plastic surgeon. I did not ask who the other doctors I would be meeting were, somehow I didn’t think I was getting breast reconstruction. But one can hope.

Here is all I knew:

There you have it. I have two weeks to wait for any more tests and to learn what is happening. It is a good time to curl into a ball and let my imagine to crazy. Or I can be proactive.

Hey, want to see my tattoo?

 

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F U, 5 times

I get to my 7:30 AM appointment to see JC. She needs to attach a catheter to my port. What’s a port you ask?

“A port is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has an area through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical “needle stick.” (Thanks Wikipedia) This picture shows what and where it is, but it is under the skin. The circular part in the middle is where the needle goes, it is just under the skin.

With a four inch catheter hanging from the port, I go to my 8:00 with the oncologist.

I am rather upset that the original oncologist, the one I met at the “Cerberus” meeting, is out on unexpected maternity leave. Well, unexpectedly early. I really liked her and she made a difference, but she is now replaced by another doctor. Multiple people assure me I will like him. And so I meet him …

Really nice guy, on the young side (aren’t they all), fantastic pedigree and education. He will do.

The chemo drug I will be getting is called Fluorouracil. Because there is a fluorine atom on the 5th carbon of a uracil ring, the drug is often referred to as “5-FU” … my favorite fun-fact about 5-FU is this:

There is very little difference between the minimum effective dose and maximum tolerated dose of 5-FU, and the drug exhibits marked individual pharmacokinetic variability.

Yeah, that sucks. The amount of the drug needed to work is very close to the maximum you can tolerate AND it is almost impossible to figure out what that dose is.

I will be getting this for about 6 weeks, 24/7. It is 10% of the strength of “regular” chemo (I will get that later). For now the goal is to sensitize the cancer cells as much as possible to the radiation so the radiation is more effective. They only do this with certain cancers, and mine qualifies.

Meet my new friend, “Effyou” 

To give you some perspective, it is just a tad bigger than my iPhone 5 (yeah, I know, but it works) and significantly thicker. It is attached to a mini IV bag, about the same size as the unit, that has a full week of poison medication in it. Everyone needs to name their pump, so the Internet tells me, hence “Effyou.”

There are two primary ways to keep the pump with you; in a “fanny pack” / purse, or in a “PoppyPocket” (an elastic band with pockets, shown here on Mr. Poppy I presume). Because I often need to get up in the middle of night to deal with Pearlsky, I worry about putting the pump on the nightstand and just walking away (ouch). I will sleep with it in a PoppyPocket on my stomach, I do not sleep on my stomach, it should work. I have ordered a Spongebob patch for my black fanny pack that I will be using during the day. Why not?

You may be wondering how I shower with the port being attached to an electronic device that is attached to me. Yeah, I wonder about that as well. The tubing is six feet long and they say to hang the pump outside the shower. I also need to cover the area around the port and keep it all dry. People use Saran Wrap and tape, Press ‘N’ Seal, etc.

Personally, I think I just won’t shower for the next 6 weeks. F U

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“Nothing in life is to be feared, it is only to be understood. Now is the time to understand more, so that we may fear less.” ~Marie Curie

Meet my friend, TrueBeam; we are dating, everyday for 6 weeks. This is the device they use to radiate tumors, and I have to admit that the engineer in me thinks it is cool. The cancer in me is not as enthralled, at least I hope not.

The poor schmuck patient lies on the table (black and red thing), and the table moves into the center-ish of the device. Those two “wings” fold in and the entire machine (that you see) turns around the table (takes maybe 20 seconds). The round part is where the beam comes out.

The technicians are in another room at monitors. The first spin of the machine apparently gives the techs a view of my viscera and they can see exactly where the beam will land. If it is good, the next spin radiates me.


This is the table, I lie face down. They do cover it with a sheet (where was this table when I needed it?) A small wedge/pillow is put on the red end and my “belly” goes over the large opening. The goal is to move my small intestine out of the way, so it would hang somewhat in that opening. Trouble is, I don’t have much of a belly. The two concave carve-outs are for my thighs, and yes, the cup is for the family jewels. Which, when done with all this radiation, will be more costume jewelry than anything else.

A couple of weeks ago I was in a different machine that they use for positioning. I moved around, they played with the machine, and then I got three tattoos. They are small blue dots, one near my tailbone, and one on each hip. When I get on this table, the machine projects a green crosshair and, guided by the tattoos, I am physically positioned the same way. Every time.

The other internal organ they like moved out of the way is my bladder. I need to show up with a full bladder each time, somehow that moves it out of the way. We want the machine to have a clear shot at the tumor.

Today did not go as planned. I get there on time with a full bladder. My turn comes up, I go in, get up on the table in my knees, drop my trousers and lay down bare-assed (they do their best for modesty, but if they want to see an old guy’s butt, ‘go for it’). They line up the dots and crosshairs and I try to lie still. That full bladder is not the most comfortable. The machine does one spin and then … nothing. A few minutes they come in and want to adjust my position, which they do by pulling the sheet under me, I am not supposed to help at all. Then one more spin. Nope, they come in and something about the angle of my hips. Another spin and a long wait. My guess is that they paged someone more experienced because they finally did some tilt of the table and we got a good scan. The last two days it was honestly a three minute procedure (table time), today was forty minutes. With a full bladder. It was not fun.

Remember I have Effyou, my pump, attached with its catheter, etc. Just getting off the table and picking up my pants (with attached fanny pack) takes longer than a proper scan.

There was a question as to if I was having a reaction to the bandage covering the port so I was sent to the chemo clinic. They changed the dressing and I need to go to them tomorrow before radiation.

Here is the new dressing.

I am thinking of starting a new line of costume jewelry … what do you think?

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“Strange now to think of you, gone without corsets & eyes, while I walk on the sunny pavement of Greenwich Village. downtown Manhattan, clear winter noon, and I’ve been up all night, talking, talking, reading the Kaddish aloud, listening to Ray Charles blues shout blind on the phonograph” ~Allen Ginsberg

Quiz time everyone! Inanna and I posed for two photographs for this rebus type quiz.


Ok, I will entertain the possibly that those are not actual photographs of us, or maybe just not recent ones, but I digress. The question of the day is what do you get when a girdle is preceded by a pelvis?

You get a pelvic girdle! And here is another actual picture of me (colorized for your edification):

(Objects in this photo are larger than they appear)

That, my friends is the pelvic girdle. My actual one (ok, that is an artists rendering) has a tumor somewhere around where the word “Rectum” is in the picture. You see how the rectum becomes the butthole, in my case the tumor is pretty much a full surgeon’s finger length in from there.

When I am lying down on Truebeam’s table and having my radiation therapy, the machine circles my body. It projects its beam, aiming at the tumor, as it traverses left-to-right across this picture, then continues across my back, across the other side, and then across the front of my body to the start position. This gives it access to every side of the tumor, and the entire pelvic girdle.

Chemotherapy is delivered directly into my bloodstream 24 hours a day, 7 days a week. Since it is in my blood, it is bathing everything in my pelvic girdle (not to mention every other body part). 5-FU basically works by messing with the DNA of quickly reproducing cells.

5-fluorouracil (5-FU) is a chemotherapeutical agent used to treat cancers including breast and colorectal. Working as an antimetabolite to prevent cell proliferation, it primarily inhibits the enzyme thymidylate synthase blocking the thymidine formation required for DNA synthesis. Although having a relatively short half-life (< 30 mins) it readily enters the brain by passive diffusion.  ~NIH

The effects are drastic on proliferating cells, which need to replicate their DNA; but not so severe in quiescent cells, where thymidine is less essential.

And combined chemotherapy and radiation therapy …

The scientific rationale for the use of chemoradiation derives from the preclinical and clinical observations of synergistic interactions between radiotherapy and chemotherapy. When chemotherapy and radiotherapy are administered together, the chemotherapeutic agents can sensitize the cancer cells to the effects of ionizing radiation, leading to increased tumor-killing effects within the radiotherapy field. This, in turn, can improve local control of the primary tumor and, in some cancers, render surgical resection unnecessary. In other cases, patients with tumors that were initially considered unresectable are able to undergo curative interventions after completing chemoradiation. The chemotherapy component can address any potential micrometastatic disease that, without therapy, leads to an increased risk of distant recurrence. A large body of evidence exists that supports the use of chemoradiotherapy in gastrointestinal cancers. In fact, one of the first tumor types in which the superior efficacy of chemoradiation was described was anal cancer. Since then, chemoradiotherapy has been explored in other gastrointestinal malignancies with superior outcomes when compared with either radiation or chemotherapy alone. ~NIH

Besides shrinking and somewhat killing the tumor, what else is going on?

Looking at the pelvic girdle, it ain’t just holding my tumor. Let’s see … bladder, urethra, prostate, testes, penis, and whatever holds them all together. And we cannot forget skin, folds of skin, hair, and butthole (easier to write than “anus” for some weird reason). All of them getting chemoradiated to different degrees.

I am doing this voluntarily, although my choices are limited. As to what are the side effects that I am experiencing?

  • As you know, my nuts hurt. And are quickly becoming ineffectual.
  • I am queasy fairly often.
  • Tired and not much stamina. Napping does not seem to help. It is not debilitating, but it is frustrating.
  • All typical signals from my lower bowel are confused. I know when I need to go to the bathroom but I have no clue what will happen. All typical sensors telling me if it is just gas, or “poop” or even at times needing to urinate are all screwed up, hence I just sit and find out.
  • Urinating hurts. It is not a true pain as when one has a urinary infection, it is a horrible bizarre feeling that just radiates from there to everywhere. Sort of like a 20 second low level electric shock that just goes through me. I know that sounds strange, or awful, and it is one of those things where I just grin and bear it.
  • Skin rashes are common in the area of radiation, particularly in the folds of skin. That means between your cheeks, top inside of thigh where they meet the body, etc. Also, even though there are no folds, you can get the rash on your the butt where you sit. This is because the radiation machine hates you. I am lucky, so far I am keeping these mostly at bay. Mostly.
  • And diarrhea is common. And we know how much fun that is. I am going to buy stock in Imodium. And Aquaphor.
  • Luckily the mammalian penis is basically just blood vessels, vacuous space, and nerves. Nothing for chemo or radiation to attack with much gusto. (That is a way in polite company for me to say “Yes, my penis still works, thank you for asking.”) But that is moot because for whatever reason, sometimes, but not all times, that feeling I mention about urinating … well … um … occurs anytime any fluid is leaving my body via this modality. Let’s just say there is nothing as much fun as a game of Russian Ejaculatory Roulette.

All in all, my pelvic girdle is a mess, most things concerning it hurt, and they will into August. But I will have a nice sterile pelvic girdle with a smaller tumor and the potential to be cancer free after surgery (September) and more chemo.

I will tell you that the continual discomfort does remind me of that corset phase I went through in college …

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