Topic: My dealing with it

Cancer is not always the easiest thing to deal with.

NOTE: Posts within this topic are shown in chronological order, the oldest first.

“You know you’re getting old when all the names in your black book have MD after them.” ~Harrison Ford

Almost everything I write in this blog is true. There is the occasional trivial side comment that is very obviously not true, but inserted for humor or sarcasm, and none of the names are real. I do that to stay anonymous; I don’t identify the hospital nor any employee but again, it is all true, especially when I quote people. The concept of an anonymous blog started when I was blogging about being a single father of a severely disabled daughter. I was very open about life and could even say things that I would not want anyone to know (that it was from me). I would get emails thanking me for saying things that others thought they were the only ones thinking.

This blog is not quite as anonymous, there are some readers who know me, and the hospital is aware of it. That does not stop me from saying the most intimate things anyway.

The blog about my daughter and me was only about that. It was rare that I spoke about other aspects of my life, as I don’t here. This blog is about me and that fucking tumor a few inches up my butt. This post is a slight diversion from that.

Five years and two days ago my severely disabled daughter was sexually molested during the summer extended year program at her high school. Five years and two days ago was the single worst day of my life. I have not been the same since.

While still paralyzed by the situation, I wrote this blog post. That was followed a few days later by this one with a title I love. Just under a year later I was interviewed and part of the interview was about “the incident.” By this time we were aware that Pearlsky did indeed know what had happened to her. That was a whole new level of devastating. The interview uses my nom de plume “SingleDad” or SD.

I really don’t know if I would have survived that period of my life if it were not for a special woman who had recently entered my life. Two years after the incident (hence a bit over three years ago) she moved to this country and moved in with her severely disabled daughter.

Inanna is the ancient Sumerian goddess of love, beauty, sex, desire, fertility, war, combat, justice, and political power. Obviously a very busy and talented goddess. That is the name I use for her here.

We spent about two and a half weeks between knowing I had colorectal cancer and having the first meeting with the three doctors to learn more. A devastating, difficult, soul searching two and a half weeks. Early on I turned to Inanna and said:

I will understand if you want to move back home to your family.

She looked at me as if I was crazy. She then told me that I was crazy.

She has stood with me the entire time. She came to the important appointments and would come to others if I wanted. She asked if she should quit her job and stay home working with the girls (“no”). She understands the side effects and not only how they affect me, but how they affect her.

I don’t know if I could get through this without her. If I was still SingleDad it would be devastating. Those of you who have followed that blog know the fear of a primary caregiver when considering their own mortality. My mortality is right now up my ass in my face.

Inanna is staying in this house, period. Her choice, her words. With or without me, with both girls. The burden that removes is simply more than you can imagine.

Cancer is a very lonely disease. But it is a bit easier if you have an ancient Sumerian goddess to help get you through the day.

 

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My life is flashing before my eyes

A life review is a phenomenon widely reported as occurring during near-death experiences, in which a person rapidly sees much or the totality of their life history. It is often referred to by people having experienced this phenomenon as having their life “flash before their eyes”. The life review is discussed in some detail by near-death experience scholars such as Raymond Moody, Kenneth Ring, and Barbara Rommer. A reformatory purpose seems commonly implicit in accounts, though not necessarily for earthly purpose, since return from a near-death experience may reportedly entail individual choice. ~Wikipedia (and if it is on the Internet, it must be true)

What the hell is a “near-death experience scholar” anyway? Ok, never mind that …

I have been doing a life review lately, not so much because I have a fucking cancerous tumor in my bowel (have I mentioned that?) but because it need to clean up my life a bit. Yeah, because of said tumor. If When this is over with a happy ending, some things will be cleaned up and behind me. When If it is over with a less happy ending, I won’t be leaving Inanna with a mess. At least I have my porn-buddy for that cleanup.

For many reasons I stopped being interested in my (successful) high-tech company a few years ago. It was around the time of Pearlsky’s incident at the high school, my partner retired, and I was in an interesting relationship with a special education director. I became an advocate at the urging of many and let the high-tech company just ride. I kept the office alive for way too long and have been cleaning it out over the last month or so, about 23 years worth of stuff. I am finding some incredible things (if you are a geek) that partially define who I am. Other things the last few days have brought about different memories.

I found this book in my office and explained to Inanna … In 1978 I was a college student and a registered Emergency Medical Technician (EMT). When the blizzard of ’78 hit (Boston) I volunteered with an ambulance service since school was closed, as was the entire city. I was riding in an army jeep that was enlisted as an ambulance and at one point we were flagged down by a lone woman in the street, around 9 or 10 in the evening. It is a good thing I sat in on the curly-haired-girl’s sign language classes because this woman was deaf. She was pregnant, that much was obvious. My pidgin sign, along with some politically incorrect pointing, got us to understand her water broke and she had some bleeding. That was my first delivery. And, under the category of circle of life, I unfortunately watched a building under the elevated subway line burn in a raging fire that night. Fighting cocks came flying out, and two children, who we saw in the windows, never made it out. Their mother, in an orange teddy, was hysterically screaming while encircled by burly cops and firemen, in snow two feet deep. I was stationed between the first firetruck and the house when a fire hose broke at the coupling and as only one fireman was on the hose, it ended up snaking wildly when he lost his grip and the full force of the water slammed me against a firetruck. It took two weeks to fully recover from the asthmatic bronchitis that followed.

I happen to hear a couple of Carol King songs on the radio yesterday. I turned to Pearlsky and told her that Carol King’s father hated me. Inanna overheard and looked at me quizzically. I explained to her that in my youth I ran a religious youth group and Carol King’s dad, Sidney Klein, was head of the Ritual Committee. Let’s just say we did not see eye to eye on things in the early 1970’s.

Intel developed a computer chip in the early 1980’s called the 8080. They did not really know what to do with it so they sent a sample to every engineer they could find. I got one with a data sheet; at that time I was working on a blood analyzer for Eastman Kodak and teaching at Rochester Institute of Technology. Oh, by the way, never play basketball against a team composed of deaf students. Just say’n. Anyway, I took the chip and in my spare time put together a very simple little computer board, pretty much to prove I could. I did nothing more with it. A couple of engineers at IBM did the same. Well, up until they proved it could work. Then they turned it into the original IBM PC and kind of sort of changed the world. A few more cups of coffee and that could have been me. But I digress … in my office I found these two items. As a geek, trust me, they are really cool.

On the left is the chipset from Intel before the 8008, it is the 4004 (really). The first real microcomputer. I always wanted to see if I could make a system with them, never got around to that pointless endeavor. (Click on the image to read what it says.)

On the right is a block of core memory from an IBM 360. When I was a student the university was upgrading the mainframe and I found this in the trash (yes, a dumpster diver in my youth.) Over four million of those blocks equals one thumb drive.

I have found a trove of old family pictures. Yes, me as a young hatchling, but more importantly, my grandparents and great grandparents. Showing Inanna my ancestors from eastern Europe, some who did not make it out alive, and explaining why my father is one of four first cousins with the same name.

As I do some house cleaning I think about my firearms. All licensed and locked. I had a license to carry in the big city years ago (and reasons to) and was a member of the oldest continually running gun club in the country. Figuring out what to do with my Walther PPK, I had flashbacks of the time I was standing over a guy, my gun pointed at his head, and police from all over the city converging on us … having no clue who I was. It is a great story in one of the most powerful posts I ever wrote, but it made me relive several things, not all the easiest (emotionally) to remember. And I need to find a new home for these.

I have the pins from my surgery when I had a spiral fracture of my tibia in 1971. My high school girlfriend’s picture (porn-buddy’s mom!) and several birth announcements, mine! Every note ever from my pediatrician starting the week I was born in 1958. A great 8×10 of me and Pearlsky’s mom at our wedding (kept face down on top of the bookcase, but nonetheless …).

With two severely disabled children, no nieces or nephews, I have to come to grips that I am the end of the line, so to speak. Whatever I can’t take with me when the holy one, blessed be He (or my tumor) decides it is time, will either go to a museum or a land fill. That’s a bit tough for me, not sure why.

Does any of this even matter? Am I the only one that has a connection to it all? Yeah, I am.

Memories. Connections. Adventures. Almost as personal and lonely as cancer in many ways.

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“Sometimes I feel like I never actually make any of my own. Choices, I mean. My entire life it just seems I never…you know, had a real say about any of it. Now this last one, cancer…all I have left is how I choose to approach this.” ~Walter White

Of course there are good things to report.

  • I am still alive
  • Nothing particularly hurts anymore
    • not my nuts
    • not ejaculating
    • not urinating (well, mostly not)
  • ” … flexible sigmoidoscopy which demonstrated a persistent ulcer but not a large mass indicating a fairly significant response to therapy. ” ~surgeon’s progress report
  • ” …  tolerated the treatment well …” ~ibid, bodes well for chemo post-surgery
  • A wonderful friend brought over some great homemade cookies. Her instructions were to eat three a day, one in the morning and one in the evening.
  • The evening of the day I was originally told I had cancer I met a woman I was working with at 5:30, before our 6:00 meeting. She was grabbing Chinese food, offered to bring me something, and I simply said “surprise me.” Having no idea of my colonoscopy, my previous fast, my clean colon, nor my cancer, she brought me a half-dozen killer-spicy wonderful pork dumplings. They were great. The next time a doctor actually went “in” and looked, the tumor was gone, replaced with an ulcer! (see 3rd primary bullet above) I credit Ms. Nyet, 100%
  • Number of unique IPs reading this blog: 
  • I am emptying out my high tech company’s office, including a fair amount of office furniture in great shape. I could not find any takers and was days from simply filling a dumpster. Then my town’s fire department saw my notice, and is taking it all, gladly, for new training rooms. A perfect match at a perfect price, free.
  • As I am “putting my affairs in order” I keep finding out about affairs I did not know I had. Like the $5000 in unclaimed funds the state had in my name. Sheesh.

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Bad days always end at midnight

Just a crap-ass day. Nothing all that specific, a couple of highlights here and there, but generally, a real crap-ass day. I want to be healthy and I want to have other things to worry about.

As I try to figure out what bothers me most, I get more bothered! Yes, ultimately the fact that I have cancer and the outcome being unknown sucks and bothers me. But actually I can deal with that as well as one can.

The question comes up, am I doing all I can for myself? I think so, but am I? Am I letting myself down?

I looked up my doctors on the Internet when all this started. The surgeon is a good as it gets, period. The oncologist and radiologist are both very highly regarded as well. The group, I am told, does more colorectal care and surgery than any other team in this big city, and that is saying a lot. So, mostly by luck and default, I have no worries or concerns about the doctors.

As we know, I have big concerns about the support staff and find myself doing some research to understand the protocols and make sure I am following the right set of instructions (the pill bottle? the oral instructions? the written instructions?).

My ex-wife has a friend, Sue. Sue is highly educated and a very nice woman but she does not appear to have a lot of “life smarts” or maybe common sense. She would do things that would drive me crazy. I knew of the things from my wife and never ever would say anything to Sue but would shake my head. A couple of times I found myself in situations where I, personally, was not sure exactly what to do. I learned to think of it this way … the Sue Test.

What would I say if this was Sue?

For instance, if I went to a restaurant that I really wanted to try, but for whatever reason it looked dirty to me or just “off” and I was not sure if I should sit and eat or just leave …

How would I react if I was told that Sue sat there and ate?

It is my mental way of looking at my own situation from the outside and putting my own values on it. I found it helpful and no, it is not mean to Sue. And in that scenario, if she had her young boy with her, I would think she was crazy.

What would I say if Sue was having these issues with her hospital care?

When you use a browser to surf the ‘net a good amount of information is actually sent to the web site itself. Your browser (Chrome, Safari, Firefox, etc.) tells the web site, among other things, who your Internet service provider (ISP) is (e.g., Verizon, Comcast, Rogers, AT&T, Cox, etc.). Some of the information is very useful, like the size of the screen the user is using. As a web designer I use this to modify the page sent to that user to look best on their size screen.

Some larger organizations have their own in-house ISP. This is true for many government agencies, universities, and hospitals or medical organizations. Because of this, I know that someone (or several people) from my hospital do at times look at this blog. But there is something much more interesting …

A couple of other medical centers have also looked in the last few days. They are using the “topics” picker on the top of the right hand side and looking at the Patient Portal archive page among others! There have also been hits from two government agencies. More interest from other medical providers than mine.

As predicted, I have not heard from the Director of Strategic Initiatives again about the Patient Portal. I am shocked! Ok, no, I’m not.

I needed to use the portal again. What’s that you say? Am I a masochist? A glutton for punishment? No, just a poor schmuck with a fucking cancerous tumor up my ass.

I know I need to see the wound nurse to figure out the best placement for the ostomy and that may take up to an hour. Then I need to sit on my ass for an hour for a 5 minute Pat-preadmission testing appointment. At least it is not a Mary-preadmission appointment; my name sure ain’t Pat. A 5 minute appointment? Really? A sobriety test takes longer than that (so I am told).

Where do I take the enema? (kidding) (I hope)

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“If our condition were truly happy, we would not seek diversion from it in order to make ourselves happy.” ~Blaise Pascal

I have really been trying to distract myself from the fact that I have cancer. And from the fact that the support staff at the hospital increase my angst and make my head want to explode.

I got a haircut the other day and once again I cut it shorter than my typical length. The cut about 6 weeks ago was definitively short for me (the pictures you have seen) and this one is even more so. People have asked me why …

No one knows what my daughter understands. We don’t know how she knows who is who, is it that she has a high congnitive level? Does she recognize my voice? Does she recognize me by my hair, the contrast in colors around my face? There is some proof she knows my voice, and my footsteps on the ramp coming up the to the front door. I have never wanted to take off my beard or drastically change my appearance as I have seen little kids react when their parents have done such.

I also know that I will be losing my hair in a couple of months. Cutting it shorter and shorter, I hope, will get me and my daughter accustomed to the new look to come.

This weekend I took on a project to distract from life and to help my school district. I made a film inside a new school building and put it all together with opening scenes, editing, credits, etc. I know, a lot of people do this all the time, but there is a difference … I had no idea what I was doing or where to even start. It took about 16 hours (learing Avidemux, Handbrake, Powerpoint, Youtube, and more) and I made the video, just waiting for the superintendent to approve it so I can release it.

Because the audio did not record well, I turned it into a silent movie! It was fun and a good exercise for my brain as well as a diversion from life. This evening I used all my brand new knowledge and made one about me and my daughter (using pre-haircut video).

It is only 2 minutes and 2 seconds, but if you watch, watch to the very end, and do have your volume turned on.

Hope you enjoy it as much as I enjoyed learning how to do this, and doing it!

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“In times of great stress or adversity, it’s always best to keep busy, to plow your anger and your energy into something positive.” ~Lee Iacocca

I woke up this morning thinking “Did I really end the last post by saying I had a ‘pink lace man-thong’?” and checked; yes I did say that. Then I wondered if there even is such an item. That’s why there is a thing called Google I guess. DO NOT CLICK ON THE FOLLOWING LINK if you are faint of heart … it is a link to Amazon (of course). THE LINK NOT TO CLICK because some things can not be unseen. Ever.

Anger is a tough issue. People tell me that I have a “right” to be angry now. Or that it is natural. I don’t think that I am particularly angry, at least not because of the cancer per se.

In 1989 I was lying on my bed watching TV and my then-wife came into the room. We had a “discussion” about something and I did get angry. I had the remote control in my hand and I threw it. Not at her, actually in a very different direction and it hit the ceiling near the wall across the room. That was just about 30 years ago, I remember it well. And I know the exact spot the remote hit.

and zoomed in …

These pictures were taken today. You may notice in the zoomed-in image on the right a faint outline around the marks … that is from painter’s tape placed over them because I will not allow them to be removed or covered. And the ceiling is actually white, so much for cell phone cameras.

The marks have lasted longer than the marriage did (and longer than the remote) but it was a good marriage (went on for 10 more years). That day was the last day I truly got angry. I look at the marks every so often to remind myself that anger is ugly, there are better ways.

I blogged about the cerberus II meeting of 16 days ago. Here is some other background that I don’t believe I have shared.

At the original cerberus meeting I asked if there was a chance that the surgeon would open me up, see that the cancer had spread and just close me up. He said:

No. Once you are on the table this tumor is coming out.

For whatever reason that made me feel ok. But, at a later date, when I was told I would get an MRI in August (the one from three weeks ago) I asked “why?” I was told that those results would tell us more about the tumor and if surgery was still a viable option. I don’t believe I shared that with anyone but it really fucked me up. This was before the start of chemo-radiation. I had the six weeks of chemo-radiation ahead of me, several weeks of “healing” and then that MRI to see if the cancer spread to the point of determining that surgery would not be an affective action. Every time that popped into my head was hell. I was very nervous about the CT and MRI scans and the results. I did not share my feelings with anyone, there was no point. I would not have felt better and they would most likely feel worse.

You can re-read the post about the cerberus II meeting but now you are aware that I was very tense about it. I was going to learn the result of the MRI and knew that there was a chance of hearing some very bad news. I arrived on time and they told me to sit and do nothing, the instructions for that day were bizarre and logistically impossible, etc. When they realized I was not happy, as I wrote, a nurse practitioner (NP) came in with someone else. It appeared that she was in some supervisory role but in my state I did not catch her name. Neither did Inanna who was sitting with me. The NP asked about some of the screwy things (my words) and photocopied the instructions I brought with me. She then asked me what else she could tell me.

I was angry. So much was screwed up and here I am, desperate to know results of my scans, it is past the time of the actual appointment to start, and I feel myself losing it. I glanced over at Inanna a couple of times and she was looking down. She has never seen me like this. Don’t get me wrong, I did not raise my voice, nor did I say anything inappropriate. Every filter in my brain was on DEFCON 1. Yet my anger was palpable, probably from 20 paces. I looked right in her eyes and all I could come up with as to what else she could tell me was the truth … “Did my cancer spread? Did the tumor shrink? Are we still having surgery?” I knew she would not answer any of these. She said she would go get the doctor.

I was livid. I was literally scared for my life. I knew NOTHING but I am sure she did. I know the doctors did. And there I sat.

As we waited I asked Inanna if I was out of line. She assured me I was not but that my anger was obvious.

It’s been thirty years since I was in that state. I wanted to throw something. I wanted to rip into the staff. I wanted to know how close I was to dying. All I wanted to know was what they knew.

A couple of days later I wanted to reach out to that nurse practitioner, but I did not know her name or even if that was really her position. I would have apologized or explained, I felt bad that I was in that state. Again, I was sure that I did nothing “wrong” yet I hoped to connect.

It didn’t happen. Until two days ago.

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