The Voice of Dex: Part Deux

Cancer patient, non Hodgkins lymphoma/Waldenstroms, Uncategorized, , , ,

The steroids are beyond insidious. Def the scariest, most-out-of-control part of this chemical andventure. Amped-up NFL players running around off the field without a clue that they’re wildly aggro, clocking their S.O.’s, wrecking cars and busting up bars…. I GET IT.

I’m not a 285 lb. guy and am not paid to destroy or cripple other people. Physically, anyway. I am making real progress on verbal destruction, however.

Here’s an email that I sent to my daughter a few weeks ago. Fueled by dex one day, solu-medrol the next. I had everything going but the foam oozing out from the sides of my mouth.

Continue reading The Voice of Dex: Part Deux →

THE VOICE OF DEX

Cancer patient, ,

Every week I take a big handful of dexamethasone pills. It’s a multi-talented steroid that is assigned to work against my unhealthy B-lymphocytes. Being a good team player, it also offsets the side effects of the chemo agent, Velcade.  I take the dex pills and get the chemo injection on Tuesdays. This is the fun and easy part of  my treatment; no scary reactions to the antibody therapy nor long hours tied to the IV pole  at the infusion center.

Before this part of the treatment got started, my docs – wonderfully straightforward and no b.s. — came right out and said, “Better warn your husband and friends that you may be more feisty, aggressive and easier to anger than usual.” OK. I’m pretty outspoken in normal circumstances…maybe getting more so, as a perk of growing up and being less concerned about pleasing everyone around me. “Dex” was going to be my conversational muse – inspiring and then letting me unleash a torrent of wicked comments, giving me an excuse for saying things that I would otherwise keep to myself. Continue reading THE VOICE OF DEX →

Being a Compliant Patient

Cancer patient, medical treatment, non Hodgkins lymphoma/Waldenstroms, , ,

The daughter of one of my dearest friends is an emergency department doctor. She chose to work in New York, right in the thick of the urban action at its most challenging. This young woman was tops in her med school class and blew the lids off her medical exams. She could have chosen any specialty but bee-lined it to Emergency Medicine.

Thoughts of this brilliant young doc kept popping up on my mental screen a few weeks ago, when I became feverish and landed in the emergency department. The ED. The previous day’s infusion might have triggered the fever spike, or maybe it was brought on by the 2-bag transfusion I was given as a chaser to the chemo. I hadn’t experienced spiking fevers before, so I started tracking my temperature every 20 minutes as I lay splayed out on our bed.

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Baby, It’s Cold Inside

Cancer patient, non Hodgkins lymphoma/Waldenstroms, , , ,

If you need to have infusion (having your meds dripped intravenously)  treatments to deal with cancer,  you’ll  learn about infusion reactions. Don’t go to a Happy Place in your mind. Listen up.

Infusion reactions can include: dizziness, weakness, nausea, itchy skin, muscle pain, sore throat, chills, fever and lots more.   My reaction of choice starts with severe chills that suddenly start from inside my body and vibrate outwards, accompanied by muscle contractions that make my teeth chatter, making it pretty impossible to speak. Then my arms and legs retract like lizard claws. Ed Wood Jr’s classic horror movies come to mind, because my cheesey alien re-enactment instantly terrifies whichever family member or friend is hanging out with me at the infusion center that day. It works every time and probably gives them bad dreams or scary thoughts. Sorry, pals. I didn’t mean to freak you out.

Rigors. That is what they call the shakey shakes and contracted muscles and clattery teeth . I didn’t associate this word with “rigor mortis,” but that is before I experienced them. Maybe it is because the staff at the hospital where I am being treated pronounce the word “rye’-gurs.” I didn’t realize it was the same word that I pronounce “riggers.”

The “mortis” part is not immediately relevant here because I am pretty much alive and well. It’s a different story when a vigorous bout of rigors kicks in, bringing plummeting blood pressure and painfully difficult breathing into the picture. Within a minute (for real), the medical staff appears with somber, unblinking focus AND their Rx-loaded crash-cart. A person gets the message that “mortis” might be a concern.

Continue reading Baby, It’s Cold Inside →

More on “3 Things to Avoid.” And a story.

Uncategorized


This morning, my ol’pal Chris sent me the following email as a comment on the “Tips for Cancer Conversations” post (August 20, 2014)

It’s way too good to live down there in the “Comments” section. Chris gets to the point more succinctly than I do – and adds an amusing vignette from her not-so-typical Catholic grammar school days.

Please read and enjoy. Chris writes:

Here’s my summary of your “3 Things to Avoid” post. I pictured a series of T-shirts  — or something — printed with each of 3 tips. 
1. Don’t tell me I look great. I’m not blind; I have cancer. 2. No martial metaphors or allusions allowed within my hearing. 3. If I’m looking for sympathy, I’ll look in the dictionary between “shit” and “syphilis.” Or if that’s too harsh, which it probably is, then maybe: “Don’t ask me how I’m feeling because I’m sure you’re smart enough to figure that out for yourself.”

When I was in grammar school, I attended the local parochial version, St. Francis Xavier in Wilmette. There were 63 kids in my first grade class. All from good Catholic families, based on numbers alone. Our teacher was Sister Alice Marie, a very diminutive nun — although one with whom you did not mess. And we all learned to read, etc.

We also had a speech teacher—as in “speech and drama.” Looking back now, I imagine that Mrs. Cavanaugh was a volunteer. Memory leads me to say that she taught our class once a week. She would have skits all ready to for us to dramatize. She planned ahead for a great number of roles in an effort to involve as many of the kids as possible. As a result, there were always lots of unusual roles. Today, that would be considered a creative opportunity for a six-year-old. Mrs. Cavanaugh was simply being practical. Once, I played a dishtowel. I don’t recall how it figured in the skit.

So that costumes were never necessary and to help the kids keep track of the parts they were playing, she had pre-made signs on cardboard with the specific item name on it. The actor wore the sign around his neck.

Your tips about avoiding conversational traps with cancer patients made me think of those skits. I thought about how clever Mrs. Cavanaugh was and how useful it would be to have signs around our necks to alert folks to avoid land mines that are otherwise buried in chatter. It would be pretty wierd, though, to wear a sign as an accessory. 

Keep blogging. And if it will help your cause, I’ll print up a sign. Or a T-shirt.

Greeting the Cancer Patient: Top Three Things to Avoid

Cancer patient, kindness, non Hodgkins lymphoma/Waldenstroms, ,

Yesterday, my dear friend Anne and I fell into the topic of what to say when you see an acquaintance or friend who has cancer. This matter requires some common sense and a dose of sensitivity. If you are lucky enough to never have been told, “You have cancer,” you will (happily) be unable to fully get the nuances of the situation.

It seems clear that the patient’s personality and temperament should drive the salutation decision, as well the how close you are with the patient.

This is not a tip. It’s a statement of fact.

Here, then, are the tips, in no universally significant order. (Note: I’m a woman, so I use the pronoun “her.” Guys, you know how to render this quirk of English grammar so it’s gender appropriate.)

Continue reading Greeting the Cancer Patient: Top Three Things to Avoid →