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.
A Sunday evening light-weight post.
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 …
Some things I have learned, experienced, and observed during my first week of chemo-radiation.
A rather forward woman, wearing a rather large religious symbol, gave me advice on my prayers, and it must have been the radiation or something, but I really thought she asked me the name of my chemo drug. I answered her question.
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?
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
The title of this post is one of my all time favorite quotes. It is from the co-founder of Digital Equipment Company, DEC.
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.
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.
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