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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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.

The post “You have cancer” appeared first on Disabled Dad.

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 9^th 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?

The post “To be optimistic about something that is absolutely unknown to you is unfounded.” ~Rachel Cusk appeared first on Disabled Dad.

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.

The post “Fortune cannot aid those who do nothing.” ~Sophocles appeared first on Disabled Dad.

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.

The post Cerberus appeared first on Disabled Dad.

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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Mom, are you going to be around on Monday? I need to see Shira, she doesn’t live too far from you so I figured I would see you too.

Mom and I have always been very close. Pretty much as close as I can be with my mom short of being creepy. I now had a treatment plan, it is time to tell mom what is going on. The only way I can do that is face-to-face so I make up an excuse and Monday morning I head out on a 5-hour drive. That gave me plenty of time to figure out how the hell I was going to tell her.

She greets me at the door with a big hug and we sit at the dining table. Right away she shows me the list of things for me to fix, look at, etc. in the house! I reach out, touch her arm, look her in the eyes …

Mom, I have a medical thing going on.

She closes her eyes, tilts her head down, and says “Ok, go on.”

I have treatable, and they believe curable, colorectal cancer.

She took a deep breath, looked at me, and said

Ok. Where do we go from here?

I told her the plan. I told her my plan. I have been putting together my finances, will, etc. and told her some of that.

I know in the next couple of days you will wake up wondering the what-ifs that you don’t want to hear, but know that Pearlsky, Ellen (sister), and Inanna will all be fine. Inanna will stay in the house with the girls no matter what and will be financially secure. I am giving Ellen the condo she is living in.

You’re not going anywhere.

Probably not.

I told her how I was documenting all the important stuff for the household in case I was too sick, or whatever. She was thrilled that Norm is my porn-buddy. She got up and came back with a notebook.

When your dad was diagnosed with lung cancer, he put this together. I did not know about it until a few years later.

Dad beat the lung cancer and lived many more years. The notebook was labeled “Things you need to know” and was divided into sections. There is banking information, car information, etc. And one page in the middle that simply said,

You should know how much I have always loved you.

I then started on her list. I changed a light bulb, fixed a phone jack, etc. When we looked at her antique dresser I said that I did not have the right tools with me, but …

I will be back in the fall and fix it.

There was then one other task, and that too, I had to tell her it needed to wait until the fall.

We then went for pizza.

The next morning as I was leaving she assured me she will be up visiting several times this summer.

And I assured her that I will be back in the fall.

The post “A boy’s best friend is his mother.” ~ Norman Bates appeared first on Disabled Dad.

Concerned about my upcoming quality of life, I decided to see if I can get medical marijuana. It is legal in my state, and I am sure it will be helpful. I believe the last time I got stoned was the late 80’s …

The first step is to get a doctor’s note. Well, sort of. There are certain doctors who can “certify” you for medical marijuana. They typically charge $200 for a visit and you do not need to bring any medical records; I brought my colonoscopy results anyway.

It’s a small office a short walk from my house. I talk to the young guy at the front desk and he checks me in. He tells me that, yes, some people get rejected but that is either because they have a heart issue or come across as young stoners. He looked at me and said I won’t have a problem.

The doctor was running late and we were bumping up against another appointment I had. Finally the doctor comes to the small waiting area and calls me in. She is a dead-ringer for Zelda Rubinstein, aka Tangina from Poltergeist …

Except the doctor had a strong Eastern European accent. She asked why I wanted medical marijuana.

I have peripheral neuropathy and I understand it can help. Additionally I have been diagnosed with stage 3 colorectal cancer and think it will be helpful with nausea from chemo.

I hand her the test results. She looks at it, thinks a moment, turns to me and asks:

What is the survival rate?

100%

Yes, she really asked me that. And yes, that is what I said.

She then started a lesson in marijuana 101.

Marijuana has been around for thousands of years …

I cut her short and explained that my severely disabled step daughter uses medical marijuana for seizure control,  that I have done extensive research on the topic, and am running late for another appointment. And then I asked …

May I ask you where you are from?

From what used to be called Yugoslavia.

My grandmother was from Banja Luka.

Me too! Let’s get you out of here.

She gave me the certification, I gave her $200.

The post “A falling stock price isn’t trouble, trouble is when your kids take dope.” ~Ken Olsen appeared first on Disabled Dad.

The title is a quote from SpongeBob’s Wishing Well song. Want to hear it? You know you do! Go ahead, listen to it … there is a prize if you do …

Now that you have that tune in your head (you’re welcome) … I will tell you that I believe that SpongeBob would never hurt anyone. Hence, my new chemo pump pack, and your prize is the picture …

The post “When your life’s come apart at the seams and you’ve given up all your dreams, here is just the means to make those dreams come true.” ~SpongeBob SquarePants appeared first on Disabled Dad.

I have never been as lonely as I am lying on that radiation table. Ok, maybe it is equally lonely sitting in the chemotherapy chair. It does not matter if there are 100 people around, if Inanna is holding my hand, or I have my dog on my lap (no, I don’t have a dog, and I doubt they are allowed in the radiation machine) (unless I had a 504 plan …). I really think loneliness is a state of mind. Sure, it can be brought on by being alone, but that is not the only form it takes.

I have been to parties where I feel there is an invisible barrier between me and all the others. That can be lonely.

This is different. I have rectal cancer which can kill me, and it may be anthropomorphism (or is it personification?) to say that in fact it wants to kill me. That’s what unchecked cancer does. It is in me, not the oncologist, the radiologist nor the surgeon. It is not in you, or anyone else, these cells are mine. This is my fight. Sure, I may “buy” drugs or consultants to tell me what to do, but when you get down to it, this is between me, the cancer, and potentially the Holy One, Blessed be He.

Other cancers, disorders, human conditions have national and international organizations that bring people together, advocate, march, lobby, and so much more. They have their own colors, logos, and instant camaraderie when members (official or not) meet.

There is no National Rectal Cancer Day.

There is no Rectal Cancer Month.

There is no color associated with Rectal Cancer. (Well, maybe there is …)

This is outrageous. So if when I survive this thing I hereby promise to start a national advocacy organization to work with and for those with rectal cancer. We will have a logo. We will have a day. The chemo drug F U will be known throughout the land.

And we will have a website. I just obtained the URL (really).

www.AssholesForRectalCancer.com

Go ahead, click on it. You know you want to.

The post “We are all so much together, but we are all dying of loneliness.” ~Albert Schweitzer appeared first on Disabled Dad.