Category Archives: non Hodgkins lymphoma/Waldenstroms

The Voice of Dex: Part Deux

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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.

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THE VOICE OF DEX

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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

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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

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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.

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Greeting the Cancer Patient: Top Three Things to Avoid

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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.)

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