“Try not to associate bodily defect with mental, my good friend, except for a solid reason” ~Charles Dickens, David Copperfield

My daughter, Pearlsky, is severely disabled. She is totally dependent on others, non-mobile, non-verbal, has no known form of communication. For twenty-five years I have strived to make her quality of life, from HER point of view, to be as good as possible. At the same time I have a prayer, I pray that she does not know she is disabled to the degree she is. Because there is no communication, we don’t know what she knows.

I am quickly going from being a caregiver to a care taker. My mind is not affected at all, but my body is being beat up. I am starting to struggle in caring for Pearlsky, and may reach a point where caring for my self is a challenge. Advocacy work, and working with the district is not an issue, I am doing much by phone and informal meetings at good times of day for me. It is tough watching myself go from helping others to needing help. I am officially a person with a disability.

Many of us become disabled; most often because of growing older, an accident, war injury, and the like. I come by my disabilities in a different manner; I choose to lie on a radiation table daily. I choose to wear a pump sending poison throughout my body 24/7. I also know that there are two possible outcomes in the months ahead, and either way the disability will end.


It must be getting to me; I can’t even play the cancer card effectively …

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“Strange now to think of you, gone without corsets & eyes, while I walk on the sunny pavement of Greenwich Village. downtown Manhattan, clear winter noon, and I’ve been up all night, talking, talking, reading the Kaddish aloud, listening to Ray Charles blues shout blind on the phonograph” ~Allen Ginsberg

Quiz time everyone! Inanna and I posed for two photographs for this rebus type quiz.


Ok, I will entertain the possibly that those are not actual photographs of us, or maybe just not recent ones, but I digress. The question of the day is what do you get when a girdle is preceded by a pelvis?

You get a pelvic girdle! And here is another actual picture of me (colorized for your edification):

(Objects in this photo are larger than they appear)

That, my friends is the pelvic girdle. My actual one (ok, that is an artists rendering) has a tumor somewhere around where the word “Rectum” is in the picture. You see how the rectum becomes the butthole, in my case the tumor is pretty much a full surgeon’s finger length in from there.

When I am lying down on Truebeam’s table and having my radiation therapy, the machine circles my body. It projects its beam, aiming at the tumor, as it traverses left-to-right across this picture, then continues across my back, across the other side, and then across the front of my body to the start position. This gives it access to every side of the tumor, and the entire pelvic girdle.

Chemotherapy is delivered directly into my bloodstream 24 hours a day, 7 days a week. Since it is in my blood, it is bathing everything in my pelvic girdle (not to mention every other body part). 5-FU basically works by messing with the DNA of quickly reproducing cells.

5-fluorouracil (5-FU) is a chemotherapeutical agent used to treat cancers including breast and colorectal. Working as an antimetabolite to prevent cell proliferation, it primarily inhibits the enzyme thymidylate synthase blocking the thymidine formation required for DNA synthesis. Although having a relatively short half-life (< 30 mins) it readily enters the brain by passive diffusion.  ~NIH

The effects are drastic on proliferating cells, which need to replicate their DNA; but not so severe in quiescent cells, where thymidine is less essential.

And combined chemotherapy and radiation therapy …

The scientific rationale for the use of chemoradiation derives from the preclinical and clinical observations of synergistic interactions between radiotherapy and chemotherapy. When chemotherapy and radiotherapy are administered together, the chemotherapeutic agents can sensitize the cancer cells to the effects of ionizing radiation, leading to increased tumor-killing effects within the radiotherapy field. This, in turn, can improve local control of the primary tumor and, in some cancers, render surgical resection unnecessary. In other cases, patients with tumors that were initially considered unresectable are able to undergo curative interventions after completing chemoradiation. The chemotherapy component can address any potential micrometastatic disease that, without therapy, leads to an increased risk of distant recurrence. A large body of evidence exists that supports the use of chemoradiotherapy in gastrointestinal cancers. In fact, one of the first tumor types in which the superior efficacy of chemoradiation was described was anal cancer. Since then, chemoradiotherapy has been explored in other gastrointestinal malignancies with superior outcomes when compared with either radiation or chemotherapy alone. ~NIH

Besides shrinking and somewhat killing the tumor, what else is going on?

Looking at the pelvic girdle, it ain’t just holding my tumor. Let’s see … bladder, urethra, prostate, testes, penis, and whatever holds them all together. And we cannot forget skin, folds of skin, hair, and butthole (easier to write than “anus” for some weird reason). All of them getting chemoradiated to different degrees.

I am doing this voluntarily, although my choices are limited. As to what are the side effects that I am experiencing?

  • As you know, my nuts hurt. And are quickly becoming ineffectual.
  • I am queasy fairly often.
  • Tired and not much stamina. Napping does not seem to help. It is not debilitating, but it is frustrating.
  • All typical signals from my lower bowel are confused. I know when I need to go to the bathroom but I have no clue what will happen. All typical sensors telling me if it is just gas, or “poop” or even at times needing to urinate are all screwed up, hence I just sit and find out.
  • Urinating hurts. It is not a true pain as when one has a urinary infection, it is a horrible bizarre feeling that just radiates from there to everywhere. Sort of like a 20 second low level electric shock that just goes through me. I know that sounds strange, or awful, and it is one of those things where I just grin and bear it.
  • Skin rashes are common in the area of radiation, particularly in the folds of skin. That means between your cheeks, top inside of thigh where they meet the body, etc. Also, even though there are no folds, you can get the rash on your the butt where you sit. This is because the radiation machine hates you. I am lucky, so far I am keeping these mostly at bay. Mostly.
  • And diarrhea is common. And we know how much fun that is. I am going to buy stock in Imodium. And Aquaphor.
  • Luckily the mammalian penis is basically just blood vessels, vacuous space, and nerves. Nothing for chemo or radiation to attack with much gusto. (That is a way in polite company for me to say “Yes, my penis still works, thank you for asking.”) But that is moot because for whatever reason, sometimes, but not all times, that feeling I mention about urinating … well … um … occurs anytime any fluid is leaving my body via this modality. Let’s just say there is nothing as much fun as a game of Russian Ejaculatory Roulette.

All in all, my pelvic girdle is a mess, most things concerning it hurt, and they will into August. But I will have a nice sterile pelvic girdle with a smaller tumor and the potential to be cancer free after surgery (September) and more chemo.

I will tell you that the continual discomfort does remind me of that corset phase I went through in college …

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You say “potato,” I say “a starchy, tuberous crop from the perennial nightshade Solanum tuberosum.”

I had my weekly appointment with the oncologist (the incredible Dr. P) and the great nurse practitioner. Somehow the subject was on me and I said …

… and I have this poison going through me all the time …

at that point the nurse practitioner interrupted …

You cannot think of it that way. We have a patient who calls her pump “Mr. Poison” and …

I stopped her.

I know this is my best chance at staying alive. I understand this is being used as medicine and I come here voluntarily and let you hook me up. I get all that. And at the same time it is making me sick, causing me all sorts of discomfort, and is messing up more than just the cancer cells. I am not obsessed that it is just poison, but I am realistic that that is what it is.

I think we have another case of “never been in my shoes, have you?” on a physical level. Let’s take a look at one of the first things handed to me when I got the pump and poison chemo.

A bit scary. I asked the chemo nurse (who, I am not sad to say, I am no longer assigned to) if this was necessary since I am only getting 1/5 of a teaspoon (1 ml.) an hour, not much will really spill. She clearly said yes, it is needed for any amount.

Ok, let’s look at some of the instruction, they are inside, with a pair of blue gloves.

Can’t imagine why we patients get the impression that this is poison.

Let’s call the whole thing off.

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I have reached the end of my gartel.

There are those who believe that to properly pray to one’s god, one needs to don a type of belt, a gartel. Interestingly, the word comes from the same root as girdle.

A purpose of the gartel is to separate the spiritual from the animal …

One needs to gird oneself with a girdle at the time of prayer; even if one wears a sash, such that one’s heart does not “see” one’s nakedness, because of concentration. ~Shulchan Arukh, O.C. 91.2

I have been wearing my chemotherapy pump 24 hours a day, 7 days a week. It has been almost 6 weeks (28 workdays) and tomorrow is the last day. As I have shown, during the day it is in a pouch on my belt. During the night I wear it on my stomach. I could put it on the nightstand but I often get up in the middle of the night for Pearlsky and I know I would not think that I am attached to it. It so happens that I never sleep on my stomach, hence the solution I use.

Tomorrow is my last radiation treatment and the last day for this round of chemotherapy. I will no longer be receiving chemo by pump, but most likely will have four months of chemo after surgery in September.

So tonight is the last night separating my animal from my spiritual.

It will not be the last night with prayers.

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“Free at last, free at last, thank god almighty we are free at last.” ~MLK

With all due respect to MLK …

No more radiation! No more 24/7 chemotherapy! No more dangling catheters, no more pump, no more nurse’s dirty looks.

  • Two – three weeks of continued side effects.
  • Eight weeks until surgery.
  • Just maybe this will be all over by next Valentine’s Day.

Lord knows I owe her my having a healthy rectum again.

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“So you’re an advocate, eh? … Then advocate for yourself!” ~(with apologies to) Max Bialystock

(I spent about eight or nine hours working to get this 25 second video clip and then put it here. And I have cancer. You have no excuse not to watch it. So there.)

Professionally, I am an advocate. I primarily do special education advocacy, working with families and school districts. I also do a good amount of work with bullying.

I am often baffled as to why parents (and often the student) will not complain to the school, only to me. It is very difficult to get a family to file a state complaint when it is fully justified. I am often asked not to say anything out of fear. I find myself explaining that problems don’t get solved without putting them “on the table.” What is it that people are worried about?

Retaliation. Yes, it is illegal and not tolerated but there is the fear they will “take it out on my child” or my favorite …

I don’t want to be labeled the difficult parent. I don’t want to be that parent.

Why not? If your child is not worth fighting for, what is left? I am a good advocate, I get references from families and from school district administrators, yet my hands are often tied.

Teachers and administrators do not retaliate against students for the vast majority of cases. I personally have never seen it. But people don’t want to “rock the boat or be that parent.”


I should have advocated for myself, and my health, when the nurse clearly voided any chance of changing my bandage in a sterile manner. I did not.

I should have advocated for myself when my first chemo nurse turned out to be a condescending, self-believed-telepathic, un-empathetic twit. Let me clarify …

I came to my appointment to start the chemotherapy as prepared as I was told to be. I had read all the materials that they offered and had already met with the oncologist. I did not have any questions going in. She started to explain the medication and was talking to me as if I was in middle school. I stopped her and said

You can speak on a different level. I read all the materials, I have three severely disabled kids in their twenties, and a lot of medical experience.

I will explain it all to you just like I do to doctors and will not skip anything.

I want to hear all you have to say, it is the level you are speaking on that I am pointing out, that’s all.

I will not skip anything.

Ok, whatever. She obviously did not hear what I was saying. I often say that to doctors and the conversation goes to a level where I learn a lot more and can engage. But alas, she continued like I was a kid that did not read the materials. It was a joke. She also told me very clearly to go home “today” and take a pill for nausea and take it every morning for the six weeks. This was in direct contradiction to the oncologist and one of my other nurses. (I never took the pills, never needed them.)

Next time I saw her, I said

I have a question about the two nausea pills and their differences.

That’s because you did not read the materials and did not listen last week.

She walked away, came back with a copy of the paperwork I already had, and told me to read it at home. And then she simply repeated what was on the paper. It was nothing like what my question was, which she did not give me a chance to ask. She assumed she that the question concerned when to take each one, when in fact my question was on the pharmacology of the pills. She did not bother to listen; she simply believed she knew what I was going to ask. She was wrong. This was all done quickly and with attitude. I did not interrupt her, no point. When I was done, I walked over to the where the pharmacists hang out with their chemo toys and asked them. They were great, and spoke to me as if I was an adult.

I can go on about Nurse Ratched but you get the idea. Trust me there is more.

I got a new nurse when my wonderful nurse practitioner got wind that I was not happy. So why did I not advocate for myself?

A special education teacher or a principal can’t really retaliate easily nor do they want to. There are many other people around, they know the parent and their (very smart, handsome, and suave tumor-enabled) advocate are watching. I do not feel the same about the hospital.

This hospital has a procedure they go through before they start the chemotherapy coursing through my veins. My chemo nurse replaces my catheter and before turning on the pump calls over another nurse. They go through a routine designed as a double-check of the medication, the pump settings, if I am the right patient, etc. Even the bag o’ poison has two signatures on it to verify two people know what the drug is, the strength, etc.

The way Nurse R. did it, any accidental error would, indeed be caught. But I noticed the first week, that if either nurse wanted to make a mistake (maybe in collusion with my tumor), they easily could and the other nurse would not catch it. There was a loophole in the routine. After my nurse was changed, I noticed a subtle difference in the way the routine was followed by others and it eliminated that loophole.

One thing that stopped me from advocating for myself in any of these situations is simply that in my case intentional retaliation is quite possible and can mean death. Anxiety when working with a patient who has complained or simply not wanting to work with a specific patient can be enough of a distraction for an unintentional error. Getting someone’s friend in trouble is not much better, and I have learned in life, you never know who is sleeping with whom.

***

Now that my nuts have stopped hurting, I don’t particularly want to die by a nursing error. But if it has to be death-by-nurse, do I get to choose?

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