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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.

Porn buddies

From Flushed the first episode of the first season of Coupling. (It’s a minute and 14 seconds, you have the time to watch it.)


I first met Norm when he was about three years old, I was in my twenties. Then I next met him when he was in his twenties and moved to the same big city I live in. He was married and getting some graduate degree as was his wife. We became close friends.

I asked him if he had some free time on Saturday.

Sure, what’s up?

I need a porn buddy.

Cool. Let’s have breakfast in the usual place.

I told him what was going on and that I had no clue about the future. I don’t have a child who can help; I wanted to know if he was willing to take on some responsibilities. He knows Inanna and she is very capable, but to a point. Norm is a CPA and has talents in areas she does not.

I am re-doing my will and would like you to be the executor. Additionally, I would like you to have all my passwords and access to everything. And, of course, if something happens, get my porn the hell out of my house.

Really? (while smirking)

Actually no concerning the porn, but there is a love letter or two from your mom to me from the mid-seventies and her high school picture with my keepsakes. Yeah, I guess I have a lot of stuff.

He readily agreed. Norm will be invaluable; he can help understand my financials (not all that complicated), computer and website stuff, house issues, etc. He is a great, stand-up kind of guy.

He may even be my kaddish.

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Cerberus

Inanna and I are sitting in a small exam room and the three doctors walk in. It is instantly obvious who the surgeon is … older, bow-tie, exuding self-confidence. The radiologist is probably in his mid-thirties and looks like any of the guys I grew up with. The hematologist/oncologist, she was different. Quiet, petite, mid-thirties as well. I did little research on the doctors at this point, but they are all very impressive. The surgeon is considered top notch, the oncologist is incredibly well educated and has an extensive curriculum vitae, the radiologist is less well known but I heard good things.

The surgeon does most of the talking (all quotes in this post really were said):

The biopsy and scans confirm rectal cancer. We’ll do a digital exam today to confirm the exact location, I want to make sure I have room for my stapler.

There are forty fingers in this room, do I get to pick?

And that is how the meeting started. Seriously.

I asked why he was referring to it as “rectal” cancer when others have said “colon.” He explained that the location is actually on the border between the colon and rectum so it actually is colorectal cancer. There is a difference in how each is cancer is dealt with, mine will be dealt with as rectal cancer.

The discussion continues as to what the plan will be. I will have 5 ½ weeks of chemotherapy, 24 hours a day, 7 days a week. During this time I will have radiation every weekday. After this, I will have 8–10 weeks of rest, no therapy of any kind. This will be followed by surgery, and then most likely 4 months of chemotherapy. The operation will leave me with a temporary ostomy that will be removed at the end of the chemotherapy.

What are the odds I am going to live until surgery?

100%

How can you say that? You’ve been doing this 24 years.

And I have never lost a patient before surgery. I cannot make any promises as to what happens after.

Ok. Maybe I should stop asking question. But of course I don’t.

What stage is the cancer?

You have to be careful with staging this type of cancer. Yours is early stage 3, but that is not 3 times worse than stage 1, it really does not mean much. Your lungs and liver are clear, it is in the first lymph nodes.

At that point it is all sinking in. I found my self keeping my eyes closed a good amount while listening, it helps me concentrate. Every time I opened my eyes, they met the eyes of the oncologist. She has these deep brown eyes and she was looking right into mine. For whatever reason, it was very comforting. There was something about her. And yes, I found her to be very cute and as I said, impressively intelligent and experienced. I knew she would help me.

During all the treatment before surgery, will I be foggy? Will my mind be clear?

The cancer is in your butt, not your head!

Well I have been told before that my head is up my ass.

This is a lot to take in. I have colon and rectal cancer. I will have radiation and chemotherapy at the same time before surgery and then more chemo is possible. I will have an ostomy. Fuck.

Do I have any options?

No. There is no plan B.

The oncologist jumped in at this point. She explained that they discussed one on-going trial as a possibility for me. That trial is the same as above but without the radiation.

Why would I choose the trial? What are the side effects of the radiation?

There may be some skin irritation. You may lose fertility.

(laughing) You can just take them as well, that does not matter.

We don’t do that, sorry. And you may lose your pubic hair.

(turning to Inanna) Well, it will make me look bigger.
Ok, I don’t want the trial. Are there any other decisions?

Because you currently have neuropathy, we will have to carefully consider the chemotherapy after surgery, but we will deal with that later.

And there we were. I have my doctors, I have my plan, I have my stage 3 colorectal cancer, and I my lungs and liver are clear. I had one more question.

Any of you have a Jewish mother?

(Radiologist) I have two, my wife and my mom.

(Sugeon) Does Italian count?

How do I tell mine?

Silence.

The surgeon then does a check as to how far in the tumor is. Yes, he can feel it with his finger in my butt. And yes, I can feel his finger in my butt (I am so glad this blog is anonymous). If it is far enough in, the ostomy will be temporary.

Great! There is plenty of room for my stapler.

The highlight of the meeting came with the surgeon’s finger up my ass.

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Autocorrect is my worst enema.

It is time for my CT and MRI. I was able to change the date and time so I am sure the doctors will have all the information they need before the big appointment.

I go out to breakfast and show up at the hospital at 9:00. First up is the CT scan. They have me sit in a small waiting room and bring me a quart of some liquid to drink. The tech warns me that it does not taste great but it is “ok” and I need to drink it all. If I had been told in advance, I would not be full from breakfast. “If I had been told …” is to become a common refrain.

I drink it all over the half hour, put on a gown, lie in the machine and get scanned. Not too big a deal, only takes a few minutes.

Next I go to the MRI waiting area, I am the only one there. After a few minutes a woman comes out, introduces herself, and tells me the doctor would like me to have an enema to make sure he gets clean pictures. Ugh.

Have you ever given yourself an enema?

No, I never had the pleasure.

She then hands me a gown and a Fleet enema, points out the instructions, points to the restroom and tells me to come back to the waiting area when I am done.

I look at the instructions, and here they are:

So I am thinking “Hey, colorectal cancer ain’t that bad! I get some new experiences.” So I study the directions and head to the bathroom.

Here is a picture of a similar bathroom. It was fairly large and had a sink and toilet, nothing else.

Having multiple engineering degrees, and in my youth being close friends with Isaac Newton, I understand that water flows downhill and one cannot take (get?) an enema standing up. That just won’t work, and besides, I don’t see that on the box. So, let’s take a look:

I go out to ask the tech a question, and of course, she is gone. I come back into the bathroom and I start to think what would work best … I am tired and could use a bit of a lie down …

But that may not be good on my back. No problem, there are other options …

There is no way I am getting on that floor. But then I remember, the waiting area is empty and it has carpet! Perfect.

If one doctor, or one tech, or one administrator was a patient there, I bet things would be different. But they are not.

I close my eyes before I am slid into the MRI machine and don’t open them until we are done. I went to my happy place; next time I will go to Pearlsky’s happy place first and borrow some valium …

Tests are done and it is six days until the big appointment. I pray I don’t get an urgent call to come right in over the next few days.

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If it’s on the Internet it must be true.

As with many hospitals these days, I can log into a patient portal and see my appointments, contact doctors, access my records, and more. So, like an idiot, I go into my account …

Remember that I have colorectal cancer, and between you and me, I am somewhat … nervous. I log in and this screen comes up:

Under my surgeon’s name it says “Colorectal Cancer is the #2 killer …” Is this supposed to make me feel better? I am to assume that it is my doctor’s talent that keeps it from being the #1 killer? Is this some advertisement for the doctor who is already my doctor? Additionally, wtf?

Then, under my hematologist/oncologist’s name is says she is out of the office for the next nine years, returning on my birthday. Nine years? Really? I spoke to her yesterday, did I scare her off?

Yes, this is going to be an adventure. Welcome aboard.

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“Fortune cannot aid those who do nothing.” ~Sophocles

[Note: I am writing about the events of the last month to catch you up. It has been a very difficult time and when you don’t have a solid plan, and don’t have all the information, you mind goes to not-great places. Stick with me here … it gets better.]

Wait two weeks?! At least that is the start of a plan.

Thinking about the appointment, I don’t believe that a 10 AM MRI test’s results will get to the team of doctors in time for a 2 PM appointment. Yes, I have faith in the doctors, and no, I don’t have faith in the schedule. I call who I need to call, I schmooze who I need to schmooze, and I get the two tests moved up to May 2, a week before the appointment (which I cannot change). That should ensure the results are ready.

All the awful thoughts start hitting me pretty hard. I really need to get my shit together, as they say “make sure your affairs are in order.” Mine certainly are not, why should they be? I was planning on living forever. My will is rather old (yeah, so am I) (and I bet if you have a will, you have not checked it in a while), I still have some financial accounts “joint” with my ex-wife (divorced … ummm … 18 years ago), and so much more. I don’t even know where to start.

I go into my local bank where I have been doing business for over twenty years. Holding back tears, I tell the manager what is going on, and we talk a bit. We look at all my accounts (businesses, personal, etc.) and I ask that Inanna be added to most of them. That can happen quickly and there is no reason not to. He also gives me the name of a local lawyer who he says would be great to work with on some of the other issues. She agrees to see me the next day.

Ok, I have a plan for the next set of tests, my local banking, and my will. I call my other bank, where I have all my investments, my mortgage, insurances, etc. and ask for whatever paperwork I need to change beneficiaries and make some accounts joint. Oh, and yes, I ask how to remove my ex from some of them as well.

Then I get a dumpster. A freaking 30-yard dumpster, construction size. Stuff does not seem to be as important anymore. Let’s call it a Spring and Fall cleaning.

Yes folks, I got my two minute warning. Here is a lighter take on this, by SingleDad, George Carlin and Robin Williams, several years ago.

 

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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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