Structure, consistency, or random crap

One thing I have learned as a special education advocate is the importance of structure and consistency when it comes to the lives of those with special needs. Pearlsky and David show this need as well. Transitions are dreaded, whether it is going from one class to another, from the school year to the summer, from one grade to another, to a different school, or graduation. Change throws us off. Structure and consistency protect us.

Adults, from ‘typical’ to whack-a-doodle, also rely on consistency.

Would you be comfortable showing up for your six month dental cleaning and there is a new hygienist? How about going to get your hair done, and your hair stylist is not there and someone unknown will cut your hair? Do you prefer to go to a random mechanic every time you need one or do you go to the one you have grown to trust?

Everyday I walk up to someone sitting in front of two computer consoles who asks my name and birth date and has me confirm that the picture on one console is of me. I walk around the wall into a room with a rather large machine and that person, and one or two others, watch as I drop my pants and lie on the table. Then one of them, I never know which, lowers my skivvies, and two of them shift my position around; it’s easier to move the target (me) than the gun (giant radiation machine).

Save for Kay, they are often different, new (to me) people. Kay has been doing this for 20 years, she lies about her age (there is no way she is over her early 40’s), has a smile, confidence in her job, professional demeanor, and makes it feel ok. She has been there for 9 out of 10 of my sessions. I have no issue with whatever part of the routine she is doing. I cannot explain how unsettling it is that all the others just come and go. The same team each day would make a significant difference.

This isn’t a haircut or teeth cleaning. This is a very personal, humbling activity that includes the aiming of a gazillion megawatt beam of radiation. This concerns life and death, literally. Mine.

When it is two younger female technicians (and I do not disparage them by mentioning female because in the context, that matters) (and although I say younger, they may very well be fully trained, eminently competent, but they are not very experienced) and they have much difficulty getting me in position, it would have meant the world to me to see a familiar face … how dare Kay have a day off. I was disappointed in myself and how much it bothered me. Why did I not leave and come back when others I trusted were there? Oh yeah, can’t do that. It will just be other new people.

There are many great people in this hospital. Many who have sympathy, but few, if any, with empathy. They just don’t see what they do through the eyes of the patient. Is it really necessary to continually change the technicians? I am on the same machine, at the same time, every day.


There is a young woman who is always at the front desk in scrubs and on a computer. I have no idea what she does, who she is, etc. She is right next to the device where I scan my card when I come in. Most days she looks up and gives me a smile. In any other setting I would know her name, and schmooze for a minute or two. I don’t here, I keep to myself and just get through it. As I was leaving yesterday she looked up at me and said “have a nice weekend.” It was the first time I heard her voice, but not the first time our eyes met. I really wanted to tell her how much that meant to me, but I didn’t, I just wanted to go home. This all sucks, but without Kay or the mystery (but consistent) woman it would suck much more.


Here you can see yesterday’s scan, and yes, I shaved my beard. 😉

“The ass is the face of the soul of sex.” ~Charles Bukowski

Many years ago I worked as a biomedical engineer and one particular job was working on a new ultrasound machine. We were working on a design that would work better than typical machines on patients who, for whatever reason, were overweight. At one point management thought we were ready for a first round of testing. Gordon, in his infinite wisdom, decided to take the prototype with him over a weekend for real world testing. As fate would have it, his somewhat overweight daughter was pregnant. And yes, on Monday he brought in the tape … the machine recorded the entire procedure. We gathered around to watch.

About two minutes into the procedure …

And this is when the fetus went into distress so we stopped.

Ok, so what are the takeaways here?

  • Gordon is a schmuck
  • Ultrasounds are not inherently safe
  • Three weeks later when Gordon took the machine home to re-test with new software, I gave my notice

I showed up for my 1:15 PM radiation treatment on time today. With a full bladder. Yes, I do what I am told.

Turns out one of the two radiation machines was not functioning properly and they were trying to run all the appointments on one machine. The broken one was the one I am scanned on …  🙁 We were given the offer to skip today and add a day at the end of our treatment; I decided to hold out for extra frequent scanner miles and a free drink.

Once they said the engineers were working on the machine, I knew we were in trouble.

After an hour and a half, keeping my bladder full, thank you very much, they called me. They actually took me to my usual machine, the broken one. All I could think about was the ultrasound machine from so many years ago … Did they re-calibrate the massive radiation monster I was about to lie under? Did they fully test whatever fix they needed to do? Don’t they first want to take that skinny guy in the waiting room who never talks?

I am met by two young women technicians I have never met before. The routine is the same, I get on my knees on the table, drop my pants around my thighs and lie face down. I lie there with my lack of belly not really hanging through the big opening in the table and my junk in a cup. I lift my hips, somehow my briefs go down and the machine swings around over me.

A green cross-hair is projected on me and they need to line up my three tattoos with the green lines. This is done by the techs grabbing the sheet I am lying on and pulling. Usually they need to move me just a bit and three or four pulls and we are all set. These two were not so adept, I finally said that this is all wrong and we started again. I shifted into what I felt like was the correct position. That did not seem to work too well for them either.

After another couple of pulls I simply said …

My bare ass can’t be that distracting.

Want to bet?

Nicest thing said to me in years …

 

“We are all so much together, but we are all dying of loneliness.” ~Albert Schweitzer

For 15 years I raised Pearlsky on my own. She and her brother were pretty much the first in medical literature with the disorder they have. There is no organization fundraising for the Inborn Error of Serine Metabolism … I was on my own in that area. There is no National Organization of Single Dads with Severely Disabled Kids. There was some loneliness in there, much of it was alleviated by my blogging as SingleDad.

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.

“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

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 …

One week down, five to go

Some things I have learned, experienced, and observed during my first week of chemo-radiation.

  • Doctors, nurses and technicians do not talk to each other. On the first day of chemo-radiation, one said “You should not have any effects from the chemo.” Another said “Take the nausea medicine as soon as you get home to stay on top of the side effects.” The third said, “Everyone is different, wait and see what happens.” All within two hours.
  • My nuts hurt. Not both at once (I guess there is a god) but sometimes one, sometimes the other. The tumor (it does not qualify for a name) is near a lot of nerves that go “down there” and at times causes issues. Remember that the tumor is not fixed in place, yes it is fixed in place relative to that part of the colon, but it moves with respect to other parts of my viscera.
  • Twenty-four / seven chemotherapy and daily radiation pretty much sucks as much as you think it would.
  • Having free, priority parking at the big city hospital would be a perk if I was there for a different reason.
  • 10:37 AM has been my favorite time of day since 1973. It was when third period in ninth grade ended and Russian class was over. I will equally remember, but dislike, 1:15 PM as the time for radiation.
  • It is extremely difficult to plan for a full bladder. Following the same routine everyday can have very different results. At least for me.
  • It is fascinating as to who reaches out and who stays silent.
  • Accepting help is difficult for me. Asking for help is virtually impossible. I know I will need to do both in the months to come, not sure how that will work out.
  • Lying on the radiation table and wishing I was dead is extraordinarily ironic.
  • All that radiation and my manhood has yet to start glowing. That would be cool.
  • Going to a fancy hair salon to get your hair washed by a wonderful young lady who everyone says is incredible, and it ends up more a relaxing scalp massage, and your port stays dry, your hair is clean, and they don’t even charge you does not make it worth having cancer, but it comes close.

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.

“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?

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

“A falling stock price isn’t trouble, trouble is when your kids take dope.” ~Ken Olsen

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.

“A boy’s best friend is his mother.” ~ Norman Bates

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.

 

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.

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.

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.

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.

“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.

 

“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?

 

Font resize
Contrast mode