Category Archives: We’re Going to be OK

Chemo 1

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Biggest dilemma Friday morning? What to wear to chemo. I wasn’t looking to look good, but I wanted an easy way for the nurses to access the port without having to change into a gown. I don’t own many button up shirts and most of my lower-cut shirts seemed too dressy (or showing too much cleavage) for chemo. I finally settled on a tank top under a zip-down Columbia fleece. I think this will be my uniform on Fridays through May. (Note to self: I probably need to buy another fleece.)

Chemo started at 8:15 with blood work, but there was a delay as soon I as entered the lab. Everything involving the port (where the blood would be drawn and chemo meds administered) must be sterile. So everything is prepackaged for convenience – the gloves, the tubing, the needle, everything. Unfortunately, I have a latex allergy – and the gloves in the kit are made of latex. There was a scramble to find non-latex sterile gloves (couldn’t be the gloves hanging on the wall since those aren’t sterile), and when they did find them, the stink from the gloves was overwhelming (like burning rubber), overall a delay of about 15 minutes before blood could be drawn from my new port (yay, it works!). The lidocaine cream I applied before leaving the house worked, and I couldn’t feel the needle going into my skin.

Met with the nurse, vitals taken, health reviewed, more talk about what to expect with chemo. Then met with the doctor and everything was repeated – with an emphasis on follow up visits (one week for more blood work and to meet with the oncologist). The oncologist asked how the kids reacted to learning of the cancer. Then he shared a story of when he learned his mom had breast cancer. He was 9 years old, same as Ethan. I knew I liked this dude.

During this time, a friend texted a few funny memories, making me LOL. B also sent a few lovey texts (so appreciated and needed XO) from his business trip to Colorado. Another friend sent encouraging words of support. All exactly what I needed.

Then to the infusion room. Because of the cost of chemo meds and the customized cocktail each patient receives, the pharmacy doesn’t start mixing the blend until this point (after blood tests confirm red/white blood counts and electrolyte measurements, and the physical exam is okay). Then everything is confirmed by multiple pharmacists and nurses. So another 25 minute wait. I settled back in my comfy recliner, plugged in the laptop, and waited. That lasted about two minutes. I was feeling antsy. Since I still wasn’t hooked up to anything, I walked around the infusion room – there’s a communal area with about seven chairs (where I sat), a handful of private rooms, and a few private rooms with beds (if you want a nap or can’t physically sit up for the duration of the treatment). There were some snacky things and a fridge of waters, juices, and sodas. There were some crafty things people made and donated for the taking. (I picked up knitted hat with a flower). Someone started a communal weave-thing (“Pick a ribbon and weave it through the strings. Leave a note for why you selected the color ribbon you did.” I did not participate this time.)

About 30 minutes after I arrived in the infusion room, saline was started through the IV in the port. The oncologist came back to find me. “You’re still having periods?” he asked. “You will be post-menopausal after a few treatments. Are you okay with that?”

“Is there an option if I’m not okay with that?” I smiled, laughed and asked.

“Not really,” he laughed.

“Then I’m okay with it. Let’s get started.”

He reiterated that he thought I would do really well with chemo.

A few more minutes of saline and then the nurse started a combination of three anti-nausea meds and a steroid. This was scheduled to take another 20 minutes or so before the actual chemo drugs would start. Lesson learned: there’s nothing hurried about this process. Sit, relax, watch Wendy Williams, chill. Know what I don’t do well? Sit, relax, chill. (I do, however, watch Wendy Williams well. I like her; she makes me laugh.)

Around 11:15 (and after I finished all three syllabi – YES!), the chemo drugs started.

“The Red Devil” was administered first. Three syringes of a bright red liquid needed to be inserted by hand by a nurse wearing full protective gear. “This is just to protect me if there are any spills…” she started.

“Toxic spills of what you’re injecting into my body,” I laughed.

The Red Devil is the drug that causes most of the problems – hair loss, mouth sores, major nausea, red pee. Twenty minutes later, the line was flushed, and the cyclophosphamide started. It would take an hour for it to run into my system. This is the drug that causes bone pain.

Overall, chemo wasn’t…bad. Comfy chairs. Cable TV. Wifi. Plenty of electrical outlets for iPhone, laptop, DVD player. Super nice nurses.

A woman named Roberta sat in the chair next to me. She was working on a watercolor of a bird. When she left, she gave me this painting and said, "It sounds like your journey is just starting. Best of luck to you." I teared up.

A woman named Roberta sat in the chair next to me. She was working on a watercolor of a bird during her treatment. When she left, she gave me this painting and said, “It sounds like your journey is just starting. Best of luck to you.” I teared up.

So, right now, I feel fine. Four different nausea meds should keep my stomach in check. Claritin should minimize the inevitable bone pain associated with my first two months of meds – as will a shot I’ll receive in 24 hours. Probably feel super tired Sunday/early Monday. Hair loss is anticipated at the two week mark.

I’m just glad to get this process started. We can’t end if we don’t start somewhere, right?

NOTE: I didn’t have my playlist from friends with me today, but I will next time. If you have any music recommendations, let me know. Doesn’t matter what kind of music – I just want music YOU recommend, to make me feel like I’m being hugged by my friends. (And thank you SO MUCH to those who’ve sent music!)

Added: the oncologist and surgeon both called tonight to see how I’m doing (completely fine). Also, wig fitting scheduled for tomorrow morning. Yippee!

My kryptonite

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I found my kryptonite – Breast MRI. I tried again, with lorazepam this time. The test didn’t even get started before I quit. I just couldn’t get enough oxygen laying on my stomach. I was worried about hurting my recent port insertion site. And I fought the “relaxing” effects of lorazepam with all my might. I was the opposite of relaxed. See, lorazepam was one of the anti-anxiety meds Mike took after he lost his job. He took the pills like candy, to the point of being zombie-ish. Then he started combining the pills with alcohol, which rendered him virtually comatose. I just couldn’t shake the image of him on the couch, not opening his eyes, mumbling incoherently. I wouldn’t let myself relax, not with THIS in my body. I didn’t want to be like THAT. So, I basically walked in the MRI room and walked out – didn’t even start the imaging. Not happening.

Thanks (for the last time)

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Dear Reader, If you’re squeamish or don’t like to read about menstrual cycles, periods, or Aunt Flo, you may want to skip this post.

Dear Period,

I just want to thank you for being there for me one more time. Oh, that’s right, this might be the last time, you know, so I appreciate how you’ve been present with (“super plus”-worthy) gusto this week. It’s hard to believe you and I have been together for more than 27 years, and that – NOW – we have to say goodbye.

Month after month, you’re there. A reminder that my body is working properly. That it’s been almost 30 days since the last time I saw you. It’s a cue to mentally review what bills I paid this month, to know that payday is coming soon, and to find my birth control pills for next month. (Oh, and during the college years, you were the “medical reason” insurance covered that prescription AND why my dad was okay with me “being on the pill,” so thanks for that, too.)

I’m torn. The security you bring when you arrive is fantastic. “You’re here! Great, I’m not pregnant!”

But you can also be a total drag. You’ve come at really bad times (hello, honeymoon). And really good times – “You’re not here? Great, I AM pregnant!” You’re how I knew I was carrying a baby in my uterus before any test could prove it – twice.

You see, I can almost set my watch and calendar by you. That’s how ridiculously consistent you’ve been, old friend. Like clockwork. No surprises.

And now we’ll be saying goodbye. Oh, it’s not that I want to. This ending comes much earlier than I anticipated. I really thought we’d have another 10 or 15 years together, at least. I even bought the jumbo box of tampons last month, never thinking we’d NOT be together. That’s commitment, that Costco-sized box in my bathroom.

But the chemo will take you away from me. Since I’m over 40, I’ve been told you’ll most likely be gone forever. How will I know it’s been a month? How will I know I’m not pregnant? How will I remember to pay my cell phone bill or mortgage (both due mid-flow)?

And of course, losing you comes with other consequences, other “stuff” I’m just not ready for – hot flashes, emotional rollercoasters, vaginal dryness. (I can’t even… Typing that last one sounds so… granny-ish.)

It’s almost like you knew this might be our last time together. You came in so quietly and sweetly, like “knock, knock, anyone home?” but woo-diggity, you made up for it after a few days. Crampiness, heaviness, fatigue – see, that’s the stuff that I won’t miss. You really could have done without going there. Seriously.

You’ll be with me another day or so, then you’ll slip away. Quietly, I hope. We may never be with one another again, you and I. But I’ll remember you.

Or not…since there won’t be a physical reminder, other than that big box of tampons, next month…

(Damn, what am I going to do with all those leftover tampons?)

Love,

Jax XO

MUGA done, port installed – two steps closer

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I’m on a first-name basis with the woman at the hospital registration desk. She instantly greeted me by name and pulled up my file when I walked in the door yesterday.

It was a busy Tuesday – one heart test and the installation of the mediport.

The MUGA scan was fairly easy. A quick blood draw, a 20 minute wait while a radioactive tracer was mixed with my blood, then I was ushered into the testing room. The blood was injected back into me (now with radioactivity!) and the radiologist placed three heart monitors on my chest.

Then I slid into the machine. It was kind of like an MRI, but MUCH more open and there wasn’t any noise. I could see the monitor showing what was happening in my chest. (The camera uses gamma rays to watch the radioactive tracer move through the heart and get pumped through the body.)

You know when you lie on the grass on a cool summer night and just look up at the stars? And how, if you’re somewhere without much “light noise,” you can see thousands of stars above you? That’s what it looked like on the screen. My body, full of stars.

The whole test lasted about 25 minutes. It was so easy and comfortable, I almost fell asleep, looking at my “stars.” The MUGA is important because a few of the chemo drugs could affect the heart muscle so the docs need to make sure my heart is strong going into chemo AND to get a baseline so my heart can be monitored at different points during my chemo regimen.

I had a few hours before the port installation, so I went home and worked on my syllabi (two done, one to go!). Then back to the hospital.

I had to be there about two hours before my procedure was scheduled. It was a long wait, but I was prepared with one of the books that’s been on my nightstand for way too long. (Gone Girl, reading the book before I see the movie. Really liking the book. Yes, my “for fun” reading is WAY behind the rest of the free world.)

More blood drawn, urine sample to prove I’m not pregnant, an IV of saline and antibiotics started.

Two hours later, I was wheeled to the operating room. This room was a little different from other ORs I’ve been in. This one was designed to use X-rays as part of the surgery to “see” where the port catheter would be placed into a vein in my chest.

More chest monitors, blood pressure cuff and oxygen thing on my finger. Lots of cleaning of the skin and prep of the area (left side, near my collarbone). Then everything turned blue as a drape was placed over my face and right side of my body.

My skin was numbed with a local anesthesia. The nurse pushed a tiny bit of general anesthesia through my IV, and she asked if I wanted more. I declined. I talked to the surgeon and nurses through the whole procedure. I couldn’t feel the incisions (two were made) but could tell when the catheter was winding its way from my collarbone to the middle of my chest. I could feel the doc use a tool to make a “pocket” between my skin and muscle to hold the actual port. I could feel the in and out of the needle as they stitched everything back up.

At this point, the surgeon said he was taking his time to make sure the stitches would heal with minimal scaring. “Doctor,” I said, “I’m having my right boob cut off in a few months. I really don’t think a couple of little scars on the left side will matter much.” (He laughed uncomfortably, but still took his time.)

Because I had so little general anesthesia, I was released less than an hour later.

Two incisions for one port. Yay no more needle sticks!

Two incisions for one port. Yay no more needle sticks! Also, why can’t anyone come up with a nicer hospital gown? Not flattering.

There’s some soreness where the port is placed, but it’s completely manageable with Tylenol. One of the two bandages came off this morning, and everything looks fine. (I covered it with a band-aid – Lalaloopsy, of course – to keep the area as clean as possible.) I just want to be super careful over the next few days because ports placed on the left side can “move” from their original location. The procedure was easy but I’d like to not go through it again until it’s time to remove the port from my body (which won’t be until “everything” is over).

It’s just weird to think I have a triangle-shaped plastic “thing” in my chest now. But it’s also nice to know that needle sticks and IVs are done since everything (except the radioactive MUGA tracer) can be accessed/pushed through the port.

Tomorrow’s supposed to be the MRI. At this point, I’m not sure I want to lay on my stomach for that long with the newly installed port. I may reschedule. This doesn’t not break my heart.

Everything is really, really real now that the gateway for the chemo drugs is in place. I’ll feel better when I get the first round finished on Friday. (Breathe…)

Shopping for my head

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Today I tried on “head accessories” – scarves (untied and pre-tied), turbans, and sleep caps. There were two other women in the shop, both had been through chemo – one of them preparing for her third time fighting cancer.

The women were super helpful with what I would need and not need. They talked about the importance of super soft materials and showed me what to look for in the placement of the seams in a turban and pre-tied scarf. They shared how to wash and care for these accessories. They showed some tricks for handling an accessorizing the “tails” of the scarves.

We talked about skin care (probably get really dry) and nail care (could lose my nails but I can still paint them using special polishes, albeit with limited color options – I’m going to miss regular manis-pedis).

I bought several things, and I gained quite a bit of confidence in figuring out how to rock this inevitable bald-thing. It was actually kind of fun trying on stuff. I look pretty damn good in a few of the turbans and scarves… Best estimate, I have 7-21 days after my first treatment before I start losing my hair.

I also got the contact information for the wig fitter/cosmetologist. She has limited hours at the hospital retail shop, but she runs a salon not far from my mom’s. I hope to get an appointment with her this week/early next to help me navigate the world of wigs and how to draw (hopefully) natural-looking eyebrows.

Shopping included looking for somewhere to store all the new stuff for my head. Some assembly required, but this ended up perfect.

Shopping included looking for something to store all the new stuff for my head. Some assembly required, but this ended up perfect.

Tomorrow, I have a heart test (some of the chemo meds can damage the heart so I need baseline results so I can be evaluated over the next few months) and the installation of the mediport (to administer the chemo and have blood drawn through this process).

It’ll be a long day.

Fun story: I tried on one of the pre-tied scarves this afternoon to show the kids. Lauren’s reaction: “Why are you the only one who gets to be a pirate? I want one, too!”