Papa, don’t preach

We have hit loggerheads this morning over the “food issue.”

I am trying to give this new diet a chance. And from what I can glean from online sources, I am in the middle of the keto flu, or the paleo pause, or the Atkins antithesis. Whatever it is, my body has not yet learned how to burn fat for energy instead of sugar.

I know this. I just don’t care.

When I tell people I want sugar, they think I want chocolate and soda. That is not what the words in my head mean. I want a piece of toast and a blueberry. I want carbs. I want raisin bran. I want to cry.

I do not want another piece of cheese.

The only thing that got me through a shower was the fear that I will stink when my dear friends from Iowa arrive this afternoon. And when you’re worried about smelling worse than Cedar Rapids, you know you stink. (we love you Quaker Oats!)

My sister has taken to creating inspirational song and dance routines to get me out of the shower, off the toilet, and out of the bathroom (she has this really good one with cheerful fist bumps) but I just can’t bear it anymore. I’m back in bed.

From the bed I can see myself in the full length mirror, and I look like crap. There is no happy way to say this.

So dad is starting the car and we’re on the way to the emergency room. I put on socks and everything. We decide to go to Hospital B.

Okay, I’m not suggesting that you ever get yourself into this situation, and should you find yourself in this situation, don’t say you heard it from me, but…

Let’s say you notice a friggin big lump in your breast and need a pcp and none in your area are taking new patients. Let’s imagine that you need a referral to an oncologist but you’re worried about the growth of your cancer while you go through the process of switching hospitals.

You could – I’m just saying could – go to the ER with a mild complaint like stomach pain or shortness of breath. (in my defense, I really did think the cancer had already spread to my stomach). By the next morning, you will have a new surgeon or oncologist.

Also, all those stomach ultrasounds and MRI tests that take outpatients 3 weeks and a bribe under the table to schedule? Two days max if you’re impatient.

Not that the ER is a great place to spend a Saturday night. There is coughing and crying and most people are probably like me and wondering if it was worth getting out of bed for. The EMTs have dropped off a woman in a purple sundress and one sock and I’m worried about her safety in the wheelchair.

But something about the words “metastatic bone cancer” gets you into triage and an exam room really fast.

My Iowa friends arrive and spend a thrilling night in the ER with me (not the first time we’ve spent our weekend this way, oddly enough).

Eventually, I am checked into a room. The rest of the process is a bit hazy because I still haven’t had any carbs and Dad has managed to follow the diet’s every little clause, like making sure my drip doesn’t have glucose.

I consider sending an SOS to my sugar dealer.

Every now and then I fall apart

It is 4 a.m. and my body is trying to figure out how to make everyone’s night more interesting. So it starts to bleed.

At first I think this is a cold and I am rubbing cold snot away from my upper lip, when I see that the sheets and blanket have a beautiful floral pattern they did not have at bedtime.

I page the nurse and can only mange to say “I think I need…help…”

Nurse Awesomesauce comes in and confirms that I’m not imagining myself in the middle of a Stephen King novel where the main character wakes up covered in blood, unsure if it is their own or someone else’s.

She brings out washcloths and wet wipes and clean sheets and everything at hand to stop the bleeding.

I have 11 thousand platelets per mL of blood. Normal is 150-450 thousand. We are so beyond the head up/head straight debate. And my 13 year old son can tell you what we do for nose bleeds, soak a cotton ball with Afrin and stuff it up your nose. But for about 45 minutes, the nurses run around trying to stop my bleeding and I let them, because they run to the Mother of Wisdom and Experience on the floor, Kay.

Kay knows things. Kay has seen things. Kay is capable of telling them how to hang the mouth siphon bucket so that it works to suck red mucus out of my throat so I don’t throw up, the second worst possible scenario.

(The first worst possible scenario was that they would still have me NPO that day.)

This is an excellent teaching moment for many of these night nurses, so I make jokes about my superpowers mutating and how you can’t deny a woman carbs. It’s about 6:00 am now and I would be really concerned by all the blood I’m losing but I’m too lightheaded to care.

Then Kay says we need to call Ear, Nose and Throat specialists.

The ENT’s PA, Annie, is in my room within 30 minutes, fast little bugger. She takes away phone and call wand and begins to set up. And I ask about a long metallic object with an elbow bend that looks like a medieval torture device. She shrugs and explains how the light green plastic in her hands is going to be a balloon inside my nose to take care of the bleeding.

“I don’t trust you now.”

“That is okay – you do not have to trust me.”

That long metal tube really is a sucking tube for cleaning out my throat while she worked on my nose, and the real torture device is the green bubble-making turtle-shaped toy that she was playing with as I came in. Because she removes the chunk of lightly clotted gunk that is all that is holding the gates of Atlantis back and replaces them with a balloon puffed up inside my sinuses and remote controlled by the cardinal positions of the navigation team.

ENT people are sadistic mofos.

I say something to this effect to her back as she finds the perfect fit with the maximum discomfort level so that the balloon inside my nose is packing all of the sides of the nasal cavity to prevent bleeding.

I joke that this is going to be uncomfortable to sleep in so I hope this is out by bedtime. ENT P.A. Annie says it will probably take 7 days in my case.

Much later this day, when the ENT doctor comes in, I ask him to personally apologize to Annie and explain that I was tired and didn’t mean anything I said that morning.

At this point, I am broken. I am no longer taking anything as a joke and when my father arrives at 7 am, I hold out my arms for a hug, because I am out of words.

This is what my end days will be like. There will be no quiet slipping into the embrace of night. It will be because I stub my toe on the bedpost and can’t stop my cracked toenail to stop bleeding.

Or my liver gives out in desperation.

Or my lungs get infected by this liquid surrounding them that we STILL haven’t gotten a sample of.




We spend the morning writing up a proper version of a living will and explaining how decisions should be make and who bears the responsibility of making them. Representatives from all the major stakeholders – parents of classmates, troop members, high school best friends, and current coworkers keep texting me and all I know is that I will wake up in a pile of my own guts some day.

Much of this morning is a blur, but my mother and brother bring my sons by to see the bloody clot I saved for them (and they do not fully appreciate). We have a serious talk with them that gets derailed into the crucial question of how their Halloween costumes are coming along.

Meanwhile, without my knowledge of anything, my sisters are being approached by representatives of our family. In the case of my sister who lives out in Portland, my cousin the pilot calls to tell her he has a ticket for her to get to our town by 8pm tonight. To my other sister in the middle of her workday, my aunt arrives with tears and news “She’s alive….” Needless to say, they both take Friday off so they can come see me tonight.

By this evening, we have some numbers we’re looking at, and these numbers are not pretty, my friends.

Everyone keeps asking me if I will be switching back to Hospital A or stay at Hospital B. This depends on whether I have a job. I thought that would probably depend on whether my body would stop Titanium-laser-beaming the platelets away. If not that, on whether my white blood cells would take a day talking to new students. But it turns out, my going back to work will primarily depend on when I get to take out the giant green balloon sticking out of my nose.

I see a pink door and I want to paint it black

Today, the Lasix kicked in enough that I can talk without pausing every 3 words, and I realized that I should be blogging this shit.

Since “to say nothing of the dog” was taken

(thanks Connie)

I tried to think of a cute name around the color pink. Problem is – I don’t actually like pink.

I’ve got a rose cami I use for layering and a pale pink trench style coat I don’t wear because I can’t keep anything that shade clean for 4 months. But I don’t want to buy your pink tee shirt. I’ll never actually wear that pin. That rubber bracelet has 0% chance of seeing the light of day. The only reason breast cancer got pink is because noone else wanted it.

And, little lesson here: 1 in 833 men will be diagnosed with breast cancer. When it is diagnosed, it’s usually further progressed and harder to treat and I’m sure the fact that one entire floor of the cancer center is painted pink is a contributing factor.

And we don’t need to get into the sexualization of the “Save the tatas/boobies/second base” marketing strategy and how demoralizing it is for women who sacrificed theirs to have a better shot at survival, because Kennedy Salts did it for me.

For privacy (and because I don’t want the IRS to know some of the things I’m about to tell you) all names have been changed except for my new besty Neal.

I’m not the poster child. There will be cursing, embarrassing pictures, and an unhappy ending. Not to mention we’re starting in the middle of the story…

Living on a prayer

I’m NPO again this morning. We are all fairly confident that the steroids are working so we can stop the bleeding in order to do do the procedure that will let me breath so I can return to the treatment that might kill the cancer so I can go home to the house that Jack built.

I’m glad I have this confidence, because Night Ninja Nancy has taken the initiative to move my water and kind bar out of reach. I woke up in the morning with no memory of this happening. It’s not like I was going to eat them! I was just looking!

We start with the benadryl, wise as we are now. We take the steroids and give them time to settle in. We pull out the fourth package of platelets this week and run a really slow drip.

Labs comes in to take my sample. “good luck,” I say, before I start my shpiel, and this is half sarcastic and half not because I don’t want the pain of a poorly executed poke.

“No problem. We’ll just make a small prick on your fingertip.”

“You can do that?”

“Oh, yeah. We’re just taking a few measurements, not like those other draws.”

“Why haven’t we been doing this all along?”

“That is a lot of blood.”

“Oh… We forgot to mention that my platelets are low. Really low. Yeah, I guess that’s why we haven’t been doing this all along.”

Several good friends and 3 pieces of swanky Halloween decor later, we get the results. My dear friends, my platelet counts is 11 thousand, lower than yesterday afternoon.

It is now 3 PM and I can eat.

In the middle of chicken strips, canned Mandarin oranges, and honey mustard-covered whatever- overcooked-vegetable-I-ordered-this-time, my son’s principal arrives.

This is going either really well or really poorly, but she’s carrying a paper bag, so I’m not panicking yet.

She brings out a fleece blanket that my sons’ 7th grade class made. Then she shows me the video of them praying the rosary while they tie the knots.

I cry. I have barely cried this whole time because I’ve been so busy telling this hilarious, life or death, multi faceted story or spending my free moments reformatting grammar tests, that I have not grieved at all.

But this blanket is more valuable to me than anyone understands because my boys do not talk to me about their lives. I have taken to asking the other parents of kids in their class to spy on them for me, because they sure as hell won’t talk about the cancer.

And their classmates all know about the cancer but they’re in 7th grade. They don’t know what to say. My boys don’t know how to answer. But they can do this for me and that is enough.

I’m waiting for one of these secret agent spy moms to arrive when MRI shows up to take me down. These people are harder to get an appointment with than a pediatric dental office that takes Medicaid. I don’t even get send her a text when they’re pulling my bedding off.

If you’re familiar with 7th grade craft projects or MRI machines, you know where this is going.

In their unfailing wisdom as teenagers, the class did not take off the safety pins on the blanket. I arrive at the machine, and the tech asks, “what are these?”

… “ferrous materials…” I answer, recalling the big warning sign on the door that says “No ferrous (metal) beyond this point.

We start pulling them out. Even from 4 feet away, you can feel the tug of the machine lifting them out of your fingers. The other warning sign says “Machines Always On.”

“Did we get them all?” she asks

I don’t actually know how many there are. “If the blanket starts flying away, we’ll know we didn’t.”

MRI Tech Barbara does not appreciate my jokes like my new besty Neal.

After 30 minutes of lying very still and being unable to appreciate the Guns n Roses station I requested because the machine was too loud, my session is finished and I get back upstairs. My friend went back home. Shift change is finished.

And it is past room service hours.

So my nurse and Latisha pull miracles out of their rainbow tooshes and get me a hot dinner.

This morning, the manager dropped off a piece of paper to vote for the most helpful nurses on staff. Night Ninja Nancy took my water. She does not get a circle. Latisha got me scrubs and a grilled cheese sandwich. She gets a circle.

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