Disabled Dad

As my childhood friend the Bard said:

All the world’s a stage,
And all the men and women merely players;
They have their exits and their entrances,
And one man in his time plays many parts, …

From cancer.gov:

There are many staging systems. Some, such as the TNM staging system, are used for many types of cancer. Others are specific to a particular type of cancer. Most staging systems include information about:

• Where the tumor is located in the body
• The cell type (such as, adenocarcinoma or squamous cell carcinoma)
• The size of the tumor
• Whether the cancer has spread to nearby lymph nodes
• Whether the cancer has spread to a different part of the body
• Tumor grade, which refers to how abnormal the cancer cells look and how likely the tumor is to grow and spread

One system used is this:

Stage	What it means
Stage 0	Abnormal cells are present but have not spread to nearby tissue. Also called carcinoma in situ, or CIS. CIS is not cancer, but it may become cancer.
Stage I, Stage II, and Stage III	Cancer is present. The higher the number, the larger the cancer tumor and the more it has spread into nearby tissues.
Stage IV	The cancer has spread to distant parts of the body.

At the first cerberus appointment we were told that I had stage III cancer, but that it was “just” stage III, close to stage II. That was not real reassuring but it was something to hold on to.

After surgery the surgeon said reported that pathology determined there were “clean margins.” What the heck does that mean?

Imagine the yolk is a tumor:

And the doctor is about to cut it out. First he adds some salt and pepper and then starts cutting. The idea is to get the entire tumor and then send what is cut out to pathology. They prefer hot sauce on their eggs, but then, they are pathologists.

In order to be sure the doctor got every bit of the tumor, they will look closely at the area the doctor cut. There should be a layer of white and no yellow showing. Any yellow showing means that the yellow, i.e. tumor, was cut and there are some tumor cells left in the patient.

This is an example where there is not a clean margin on the right of this picture, hence some tumor is still in the rest of the fucking colon and I picked the wrong surgeon. And now I’m hungry.

We had clean margins. I did not say “duh” as he took out about 12 inches of colon and the cancer was more like 3 inches or something like that.

lymph node (limf node) A small bean-shaped structure that is part of the body’s immune system. Lymph nodes filter substances that travel through the lymphatic fluid, and they contain lymphocytes (white blood cells) that help the body fight infection and disease. There are hundreds of lymph nodes found throughout the body. They are connected to one another by lymph vessels. Clusters of lymph nodes are found in the neck, axilla (underarm), chest, abdomen, and groin. For example, there are about 20-40 lymph nodes in the axilla. Also called lymph gland.

The surgeon also removed some of the lymph nodes that are involved with the part of the colon I used to have. I was told that there is more concern when five or more lymph nodes have cancer cells. Four of mine did.

… His acts being seven ages. At first, the infant,
Mewling and puking in the nurse’s arms.
Then the whining schoolboy, with his satchel
And shining morning face, creeping like snail
Unwillingly to school. And then the lover,
Sighing like furnace, with a woeful ballad
Made to his mistress’ eyebrow. Then a soldier,
Full of strange oaths and bearded like the pard,
Jealous in honor, sudden and quick in quarrel,
Seeking the bubble reputation …

And that is all I knew going into chemotherapy, the last of the triad …

chemo-radiation : surgery : chemotherapy

I was at one of my every-two-week appointments to get infused. The protocol is I go in and first they hook up to my port and take blood for testing. I meet the doctor afterwards and if the blood tests are “good” I then got two hours of IV, only to go home for 48 hours with a pump continually infusing me more. Luckily Quinilla (Dr. Pye) was back from her leave and I met with her for the majority of the appointments.

I don’t remember how it came up (keep it clean) but we were talking about my current symptoms and whatever, and then she said it.

The final determination on staging was IIIc.

That is the highest stage short of stage IV (spread to other organs).

So that was a surprise. My head was spinning a bit and somehow, as stupid as it was, we got on the subject of survival rates. Stage III has around a 70% five-year survival rate. Stage IV is around 20%.

Had I waited much longer for my colonoscopy I would be dealing with a 20% survival rate. Definitely a 12 on the what-the-fuck-o-meter.

… Even in the cannon’s mouth. And then the justice,
In fair round belly with good capon lined,
With eyes severe and beard of formal cut,
Full of wise saws and modern instances;
And so he plays his part. The sixth age shifts
Into the lean and slippered pantaloon,
With spectacles on nose and pouch on side;
His youthful hose, well saved, a world too wide
For his shrunk shank, and his big manly voice,
Turning again toward childish treble, pipes
And whistles in his sound. Last scene of all,
That ends this strange eventful history,
Is second childishness and mere oblivion,
Sans teeth, sans eyes, sans taste, sans everything.

-As You Like It, Act II, Scene VII [All the world’s a stage]
William Shakespeare, aka the Bard

I got a call last week.

I am calling to schedule your test.

What test? I have no idea what you are talking about.

Your pouchgram. How is next Tuesday at 10:30?

Remember that I have an ostomy, my colon is diverted to the front of my belly and I have a bag (or pouch) attached that catches my, well, poop. That’s the only pouch I know.

Can you tell me what a pouchgram is?

It’s a sleep study.

Excuse me? What?

No, never mind. I am not sure what it is.

Who ordered it?

(she names a nurse practitioner)

Whatever. Sure, next Tuesday.

No preparation information. No mail or email like most other appointments. All I know is to show up on the fourth floor which I obediently do. Hmmmm, the breast clinic or radiology? I try radiology. And yes, the guy tells me I am in the right place. Damn.

Someone comes out and takes me to a small changing room and tells me to get undressed from the waist down and put on a gown. I ask what the test is about, he says it is to check my pouch. Ok …

I wait while wearing the gown and then get brought in to a room with an xray type machine. I ask the tech what the test is and he just looks at me. I tell him I have no idea. He says he will get the doctor.

An Indian woman (yes, it is relevant that she is Indian) comes in. She too is surprised I have no idea what this is about and tells me that I am free to leave and do it another time. I just asked what it is about.

To check your pouch.

Right, my pouch is fine and I show her.

Not that pouch. The one the doctor created during your surgery.

The doctor removed about a foot of my colon, starting just inside my butt and removed my rectum and part of the descending colon. He then brought the remaining part of the colon down towards my butt and reconnected it. In that area he did something that will hopefully work like my rectum did (where your poop is when you are scrambling to find a restroom). And guess what they call that … go ahead, guess. Yes, a pouch.

We are going to inject a contrast solution and take pictures of your colon to make sure there are no leaks.

Inject?

Not with an IV.

In my asshole?

We like to use more technical terms here.

Ok, my butthole?

Yes.

So there I am, again on one of those tables, this time with contrast going in my butt, a floroscope showing what is going on in real-time.

I ask the doctor where she is from and for the next 15 minutes during the test we discuss my two trips to India, great distraction for me, hopefully not for her.

No leaks, that’s good news.

I owe you all an apology. I know I disappeared and that was not right. I also assume you understand or will.

Chemotherapy is not easy. Having cancer is not easy. Being disabled is not easy. Things suck sometimes.

I am told, and know from some personal knowledge, that my trek through chemo went easier than for many other people. Everyone (doctors included) is amazed that I never needed the anti-nausea medications. I was continually told how great I looked. People were amazed to see me on errands or what have you. But I felt like shit. And it got worse by the day.

I have had peripheral neuropathy for years (numbness, tingling, occasional break through pain) in my feet. It progressively got worse (expected and watched) but since I have been dealing with it, I could continue to. It also manifested in the outer side of my left hand, making typing “q” or “a” difficult! And the exhaustion. The total, devastating exhaustion. I would lie down multiple times during the day.

I feel like a 60 year old when I go up a flight of stairs.

My oncologist (yes, Dr. Pye) looked at me, looked at my chart, and gave me a smirk (I am 60).

I have spent most of the last few months exhausted. Any (and all) skin conditions I ever had came back in a vengeance (also expected). The skin on my hands is tight and extremely dry, cracking, and often painful.

And I could not get myself to blog. I am sorry. For me, and for you.

The symptoms should have peaked last week or so, I have been off chemo for three weeks, and hopefully forever. In three weeks I have a CT scan to check my liver and lungs, and another cerberus appointment, the three doctors telling me what is to come. They will hopefully say we will reverse the ostomy so I can properly start using my butt again and get back to life.

My fear? Since my healthy cells were able to survive through chemo better than many other people’s, does this mean that my cancer cells (the target of the chemo) were able to as well? Dr. Pye says there is no correlation.

No one knows if there were any stray cancer cells in my body after surgery. We did chemo anyway in an effort to make sure none were around. The whole thing really really sucked. But this stage is over and I am still on the right side of the ground.

Words of wisdom, or not, for the Thanksgiving holiday.

Yes, I am thankful that I am still alive. I am thankful for the incredible support from Inanna.

A quick check of on-line dictionaries and I find that yes, unthankful is a word.

un·thank·ful
/ˌənˈTHaNGkfəl/
adjective
not feeling or showing pleasure, relief, or gratitude.

There is a lot I am unthankful for as well. I sit here at the end of two rounds of chemotherapy. I go in on a Monday and get blood tests, two hours of infusion and go home with an infusion pump for 46 hours of continuous further administration of chemo. A visiting nurse removes the pump on Wednesday afternoon. Eleven days goes by with no chemo entering my body, just chemo continuing to fuck me up. Did that twice, going again this Monday to start round 3.

The first round went fairly well, minimal side effects. The second round, not so much. Cold feels like an electric shock, queasiness is Bob to my Leo …

I have a taste in my mouth that never goes away. If it was chocolate or coffee, I could deal. It is more like a cross between yeech and blech. Yes, I have tried mints, citrus fruits, alcohol, Altoids, pizza, licking random walls, and smothering myself with a pillow. Did you ever notice that you can’t smother yourself with a pillow. Why is that?

I spend a good amount of time in bed because of the fairly pervasive tiredness. Ginger is my best friend.

No, not that Ginger, besides I was more of a (I Dream of) Jeannie kind of guy. Ginger tea or crystallized ginger, and sublingual marijuana hold it at bay, sort of. I do take some of the meds I have when it gets bad, but that is not too often. Most of the time it is like annoying background noise. Any quiet moment I notice that, well, I am wondering where the railing is in case I need to bend over it and toss my cookies.

There are wonderful people in my community who have brought food to the house or send restaurant gift cards, etc. I cannot say how wonderful this really is … my appetite is all over the map but it takes that much more off Inanna’s plate, and that is really important. I am dealing with the brunt of this physically, but for her there is the mental / emotional part. She has trouble seeing me hurt. And, for whatever reason, she surely does not want to see me die. Lightening her load in any way is so appreciated.

I mentioned in a previous post that my CEA was 31 in the beginning of this journey. This is a blood marker for my tumor, one wants the number below 5. My was 31 because, well, I had a cancerous tumor. After chemo-radiation it went down to 19 or something like that. The doctors had hoped for a lower value, chemo-radiation was not as effective as one would hope. We now test the value once a month, the first was the first day of post-surgery chemo, six weeks after surgery. The doctors were hoping for five, I was hoping for zero. It was 1.6 which is wonderful (it will never be zero). That basically means that I don’t have a rouge tumor growing somewhere from the same cancer. Yes, I still have stray cancer cells floating around (like seeds) and the current chemo is designed to get rid of them. But that news was great. It will be tested again this Monday.

Mom came to visit for Thanksgiving. My sister (lives locally), Inanna, our two girls, mom, and I all went to my sister-in-law’s for dinner. She is an incredible hostess (and kudo’s to her husband as well). There was one toast, and it started with appreciation that I am still alive. And there was turkey. Go figure.

I am trying to keep busy to distract from the side effects. One other one is that my butt-hole still hurts. Not awful, but yeah, it just hurts. I can’t blame it, but I can curse it. And I do. Maybe this is where the expression “fucking asshole” comes from. I do find it ironic that I was never one into passively figging but now my life is consumed with it’s constituent parts.

I am unthankful for

• 6 more chemo cycles to go
• medical science’s level of barbarism
• the accident last night at 3 am, let’s just say it shit-the-bed
• the pain in my ass
• what this is doing to those I love and care about most

I am thankful for:

• Inanna
• a cea of 1.6
• two chemo cycles down
• friends and even some people I don’t know for their kindness and support
• medical science, no matter how barbaric it may be
• waking up every morning, being a man or not
• for whatever reason, I look better than people expect (no clue what they expect)

Yes, I know, it could be worse. But it could be a hell of a lot better, no?

We go on. It is better than dead. I can survive another 6 rounds of chemo I am sure. And if it ups my chance of long term survival (dare I say cure?) then it is worth every moment of queasiness, every bit of exhaustion, and an annoying butt-hole.

Be thankful. All in all, I am.

The whole concept of side effects is bizarre. I guess nothing good comes without something bad. A typical list for just about any medication or procedure looks something like this:

Side effects are uncommon, and include headache, nausea, stigmata, vomiting, death, dizziness, vaginal ejaculations, dysentery, cardiac arrhythmia, mild heart explosions, varicose veins, darkened stool, darkened soul, lycanthropy, trucanthropy, more vomiting, arteriosclerosis, hemorrhoids, diabetes, virginity, mild discomfort, vampirism, gender impermanence, spontaneous dental hydroplosion, sugar high, even more vomiting, brown, your mom, and mild rash.

When I was warned about the side effects of radiation (and had to sign off that I acknowledged them) I was told that colorectal cancer was a potential side effect! I was lucky, I did not get too many side effects during the chemo-radiation portion of my journey. That bodes well for the chemo that I am starting on Monday.

The surgeon went over a list of potential side effects from the surgery when I had to sign that consent. It was a typical list including infection, death, impotence, blockages, etc. Pretty much a list of awful things but seeing that the alternative would be death by cancer, I smiled and signed.

I got hit with a good amount (well, a bad amount actually) of side effects after the surgery. I had two blockages in my small intestine that caused all sorts of other issues. It was fairly awful but I made it through, and that is pretty much all that counts.

One of the side effects that was emphasized a bit more than the others during that early visit was impotence. In case you are not sure what I am talking about …

• Erectile dysfunction
• 180 degrees shy of heaven
• Performing with Flacido Domingo
• A few parts shy of an erector set
• Sch-wing and a miss
• Not rising to the level of impeachable offence
• The Null Monte
• Disappointing Miss Daisy
• Taking the gold at the Lake Flaccid Olympics
• Ascension Deficit Disorder
• Bouncing the Check of Love
• Less-than-Magic Johnson
• All Doled up with nowhere to go
• Welcome to Flaccid City. Population: You
• Serving boneless pork
• Unleavened Man-Bread

Impotence is the inability for a man to get and maintain an erection. It is also known as erectile dysfunction and can impact a person’s ability to have satisfactory sexual intercourse.

The doctor did mention that we now have drugs that can help with that if it comes to fruition since the cause would be nerve damage from the surgery.

No big deal I thought. Well, to be clear, it would be a big deal, but I mean ok, I can handle that, um, I mean I can deal with it. And so can Inanna. After all, better limp than dead I always say.

I have been lucky, I only dealt with not rising to the occasion once, and having just turned 60 that is pretty amazing. I was a young college professor and had three wisdom teeth out one morning. That afternoon the dean’s very enticing secretary came by to check on how I was doing. One thing led to another and, well, I found out that heavy pain medications in those days had a direct effect on one’s (ok, my) ability to rise to the occasion.  I actually found it very funny (really). Not sure she did, she never checked in on me again. It was all probably for the best since I was not tenured and the dean was not real fond of me to start with. Anyway, I digress …

There is something about having a hard difficult time recovering from colorectal surgery, dealing with a stoma and ostomy bag, and in general one’s mindset with all of this, that keeps one’s libido in check. Whether or not I had this particular side effect was not much on my mind. Until it was back on my mind. I hit me hard as the thoughts rose in my mind, hardening my intent to figure out if my stoma was going to be the only thing sticking out from my body for the rest of my days.

I thought about it for a couple of days, willing willy to show me his stuff. Nothing. I revisited the fantasies of being Carlo Ponti … to no avail. I spent an hour in my shrine to Brigitte Bardot … nothing. Figuring the usuals did not work, I tried reverse psychology and Googled “naked Kardashians” … that only reignited my nausea side effect. Ugh. Yeah, a big nothing.

That evening I really needed to know. I took off my big-man panties and decided there is only one way to find out.

The scene was caught on one of the many nanny cams in the house. Here is the footage of me and Inanna the other night.

Great singing voice she has, no?

I guess if there is one side effect I could choose not to get, other than death or stigmata, this would be high on my list.

Yes, it’s a big deal. Yes, you can all stop worrying about it, I have.

The day I left the hospital for the second time was the same day I was scheduled to have my follow-up appointment with the surgeon. We agreed to reschedule that, and I never heard. About a week later I sent a message to both the surgeon and my chemo doctor that I had no appointments scheduled and I don’t know when chemo was supposed to start.

Two days later I got a call and we scheduled an appointment with both the surgeon and the chemo doctor.

The first words from the surgeon were:

So what is my name on your blog?

Wonderful. I told him “John Hunter,” and he smiled, then got down to business.

He asked how I am feeling and if I have any pain. I told him that I really have not had any pain since the surgery except for the fact that my asshole hurts all the time.

The good news is that I am in remission.

remission listen (reh-MIH-shun) A decrease in or disappearance of signs and symptoms of cancer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body. ~National Cancer Institute at NIH

Both doctors agree that a dozen years ago they would have stopped treatment at this point.

The pathology report had several important findings:

• Clean margins – the surgery removed the entire tumor
• Four lymph nodes were affected
• The tumor did not respond as well as hoped to the chemo-radiation

So what does this mean? A lot, actually. If five or more lymph nodes are affected they get more concerned. I had four. The fact that the tumor did not respond as well as we hoped means that we need to be a bit more aggressive with the next step to eliminate any cancer still hanging around in my body.

Additionally, now that they have a direct analysis of the tumor and surrounding area (as opposed to imaging) the original staging determination is re-visited. I was told that the cancer was Stage IIIB it has now been staged at IIIC.

You may ask what this means for me? Actually, it does not mean shit (so to speak). Technically it is how far the tumor affected the layers of the wall of the colon, the lymph node involvement, etc. What does it mean for my survival? Nothing. Unless there is 0% survival, it means nothing (and there are very good survival rates).

Taking all this into account, the team of doctors have decided that I will have four months of chemotherapy. Because the tumor’s response to the 5-FU sucked (my word, their implication) they want to start sooner rather than later and be fairly aggressive. I will be starting chemotherapy in a week.

The treatment is called folfox6 and consists of three drugs, one of them being my friend 5-FU. I will go in on a Monday and get a blood test then an IV for several hours. After this I will get my friend the pump back and I can go home while getting a stronger dose of 5-FU for the next 46 hours. On Wednesday the pump is disconnected and I have nothing for the next 11 days. That is one cycle, it will then repeat for a total of 8 times, 4 months.

I should not lose my hair! My mind maybe, but not my hair. Nausea will be an issue but there are meds (and marijuana) for such things. One of the stranger side effects is that cold will be painful.

Now for the peculiar part—this platinum drug has a particularly unusual side effect, neurotoxicity exacerbated by cold temperatures. Generally, the first thing that comes to mind when I hear “oxaliplatin” is “ixnay on the ice, okay?” This infamous side effect of cold sensitivity can occur within hours of the infusion and typically lasts several days. It usually lessens or goes away completely between treatments, but as the number of cycles increases, the numbness and tingling ordinarily takes longer to dissipate. This may present like typical peripheral neuropathies such as numbness and tingling or even cramping in the hands or feet; however, it’s triggered by cold. So touching anything out of the refrigerator, freezer, cold section of the grocery store, or washing hands with cold water will set off the numbness and tingling pretty much as soon as they touch it. Think about all the things in daily life this affects (cold tiles on your bathroom or kitchen floor, cold hand railings outside, etc.). So educate your patients accordingly. Luckily, the cold sensitivity only lasts for a few days, but it certainly makes you have to think a bit more about normal daily functions.

And it doesn’t stop with the hands and feet. The neurotoxicity can cause laryngeal spasms as well if a patient drinks cold fluids. Just like in the periphery, it typically sets off tingling on the lips and tongue pretty much from the onset of touching the cool liquid. However, it can continue and cause laryngeal spasms, which may make the patient feel like their throat is closing, or have difficulty swallowing, shortness of breath, jaw spasm, or abnormal tongue sensations. (Ixnay on the ice, okay?)

Because this can start quickly, avoid cold drinks even during the infusion. If you have volunteers or helpers checking on patients and bringing drinks or snacks in your infusion room, make sure they only bring room temperature or warm beverages to anyone receiving Oxaliplatin. As for the recent frigid temperatures we’ve been experiencing lately, make sure to instruct your patient to dress warm when going outside in cold weather including gloves, hats, and scarves to cover their mouth and nose to help protect against exposure to the cold air. I have had multiple patients tell me in winter months that the cold air caused symptoms—so bundle up! ~source

I hope global warming hurries up and takes over in the next few weeks …

At the end of the appointment the surgeon wanted to check why my asshole hurts. All the time. (Did I mention that?) With his finger he said that my sigmoid colon was not happy and he could feel it spasming. The sigmoid colon is typically not reachable in this manner, but I am missing about a foot of colon and the sigmoid has been re-positioned and attached to my anal canal. And apparently it is not happy. That makes two of us. It should calm down at some point. Hopefully I will too.

I turn 60 on Monday. I made it and was not always sure I would.