Let Us Begin

I’ll be honest. I didn’t really want a steel wire threaded up from my wrist to the inside of my heart. Abundant anxiety as my brother and I tried to find our way through the maze of hallways at Kaiser Walnut Creek. No one seemed to know where I was supposed to be for my angiogram, which didn’t instill a lot of confidence in the whole Walnut Creek operation (as opposed to my Mother Ship, Kaiser Oakland, which is somehow chaotically functional and professional). We make a joke about Igor and a basement “operating room.”

But…after 90 minutes of prep and pep talks by wonderful nurses, it took no more than 10 minutes for them to feed the catheter up my arm and into my heart, inject some dye, look around, and call it a day—all of which I endured wide awake with just a smidge of fentanyl.

“OK, we’re done. Everything looks good,” says the doctor. Good as in no heart disease. Good as in no blood clots or other blockages. Good as in no stent required. And good as in “you can go home in a few hours.”

Good as in a good day.

PS: Nurse Nancy told me that I had to be very careful with the incision where they put in the catheter so that it doesn’t start bleeding. It’s an artery, and if it were to break open, I could “bleed out in two minutes.” I guess that would qualify as a bad day.

[Good Day Sunshine, The Beatles]

Some merciful good news last night. I had an echocardiogram yesterday (that’s an ultrasound of the heart), and it showed no damage and my heart working normally. The aorta is slightly dilated (hmm, Dr. Google has a lot to say about that), but the cardiologist is not concerned, at least for now.

Big exhale.

Nonetheless, we had these shortness-of-breath episodes, so we will go ahead with an angioplasty tomorrow morning to see what’s what.

Fingers crossed and all that, and hopefully back to chemo next week.

[Heart of Gold, Neil Young]

We’re calling it the Great Pumpkin (thank you, Kim!). It’s starts off as a grapefruit-sized ball of chemo chemical attached to my port in my chest. I wear it for two days as the chemicals drip slowly into my body. When the ball is empty, I get it disconnected, and then I am free from chemicals for 12 days.

So far, the day after my first treatment is going well. No major side effects as of yet. Just a little fatigue and light-headedness. I know it will get worse as time passes, so I’m cherishing every non-horrible moment.

Onward.

Mixed feelings today. Excited to finally be attacking this bastard tumor. Anxious about the experience.

The injection clinic is nothing like I imagined. I had conjured up an image of a serene, quiet and low-lit (if sterile and institutional) room with rows of patients in recliners. Some reading, some resting, others on their phones or laptops.

Hah. How about a big kind-of-noisy clinic with rows of nurses stations and patients in hospital-like rooms or curtained off spaces. I get a room that feels like every Kaiser doctor’s office I have ever been in, except for the red $5,000 recliner in the corner, pillows, and a chemo IV machine.

Lisa is my nurse and I get almost all of her attention for the morning. She went into oncology nursing after watching her father deal with cancer nearly 30 years ago and realizing it was something she could handle. She explains everything in excruciating detail; another information bomb, but today it’s especially useful because it allows me to set my expectations for what is to come.

Here is the anti-nausea medicine for today.
This is the first drug you’ll be taking.
Have you picked all your prescriptions?
Let’s talk about nausea and diarrhea.
The cold sensitivity sometimes starts right away.
How do you feel about cannabis? Sativa can help a lot with nausea. It’s stupid that it’s still stigmatized; Big Pharma and the feds are the problem.
Here is the what the pump that you will be taking home looks like. You get a fanny pack that looks like it came from a dollar store.
We had a guy once almost rip out his pump from his chemo port because he went to play basketball. Don’t do that.
OK, let’s start the second medicine. If you start to feel flushed or have a grumbly stomach, summon Zabeda immediately and we’ll give you atropine. (I did, and they did.)
Here’s the deal with your platelets and neutrophils. If they get too low, we’ll need to skip a cycle until you recover.
You might not lose much hair. Don’t shave your head just yet.
Do you want a granola bar? We have four kinds.

Bridgette comes in with good news. Instead of giving myself five white blood cell shots each cycle, they will give me one “super shot” when I get my pump disconnected. Praise be. She got permission to do this because I mentioned at one point not liking needles. In fact, Bridgette has put the whole nursing staff on alert that I hate needles. An overreaction, but they are all gentle with me now.

Also good: Lisa tells me that I can come in to get the pump disconnected whenever it runs dry. No need to wait two full days.

The chemo port makes sense now. It’s painless and less squeamy (new word) than an IV in the arm. Still weird to have a lump in my chest and a catheter going to my heart.

Biggest takeaway today: The wifi here sucks.

{Title from Lewis Carroll, Alice in Wonderland]

There are three of us in a basement meeting room—two younger women and me. Neither of us knows exactly why the others are there, except that we all angered a god or spirit or demon along the way. Each of us is given a thick packet…the basics of where and when we are to report, the meds we might need to pick up beforehand (for nausea or constipation or…), and a “scared straight” slide deck that pulls no punches in describing what we are in for.

Pages and pages of what chemotherapy is and how the specific drugs they will be pumping directly into my heart will do their job and how they will affect me. And a lovely soothing four-color brochure—Understanding Chemotherapy—that the nurse is quite proud of.

It’s all too much to take in, and Bridgette the nurse says as much. There will be plenty of time for questions along the way.

Midway through, I’m overcome with emotion at everything in store for me, and her voice recedes as my brain starts pounding away at the absurdity of it all. Our tools against cancer are still so medieval.

Bridgette springs a few surprises on me. One, I’ll likely be very sensitive to cold. So no cold drinks or foods, and I’ll need to bundle up in cold weather, and I shouldn’t touch anything cold. We can have ice cream, for example, but we need to let it sit on the counter and get to room temperature—at which point I believe it just becomes “cream” without the “ice.” I will enjoy my last yummy protein and fruit smoothie tomorrow morning.

Second, and this is where I get to separate myself from my classmates, I’ll be administering subcutaneous shots to myself for five days after each cycle. These are intended to boost my white blood cell count. Why I get this privilege and my classmates don’t is not clear. (I believe it’s because my drugs are more harsh and destabilizing.)

Third, I will need to have blood drawn two days before each cycle. So by my count, that’s three visits in a week’s time: the lab, the chemo session, and the removal of my pump. 3701 Broadway, my home away from home.

The hair might start to disappear in a couple of weeks. I’ll need to decide whether or not to take charge of my hair or let it take charge of itself. The 22-year-old Aleah in front of me has amazingly thick, dark curly hair, and she has already decided that she’s going to take it all off. “My mom had cancer, and I watched her hair fall out, and it was miserable.”

At some point, there are really no more questions to ask, and Bridgette shuffles us along. We say “good luck” to each other. Let us begin.