Tag Archives: Life

Weekend update

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It’s Sunday night, and I’m feeling pretty damn okay. Little lazy, but not over fatigued. Aware of my bones, but not in pain or discomfort. Slight headache from lack of caffeine since I’m concentrating on water consumption. (I’m allowing one coffee or one soda a day.) I’d say on a scale from 1 (feeling completely shitty) to 10 (feeling great), I’m about a 7. I’m okay with that, especially since the docs predicted today would be the worst day post-treatment.

  • The day of and the day after my first chemo, I felt somewhat hyper. Lots of energy, lots of talking, almost restless. I got some stuff done around the house I’d been putting off. I played with the kiddos. Ran a few errands. No nausea at all, but I’m on four different anti-nausea meds through Tuesday. I did start having hot flashes, though. Oh boy, hot flashes are going to suck. (Luckily, not as many today.)
  • Big lesson learned over the last two days: when the nurse says “drink as much water as you can to flush the meds,” she is not issuing a challenge. Day of chemo, I drank 200 ounces of water in about eight hours. Saturday, I drank the same over about 10 hours. Too much. I felt like a beached whale by the end of the night.
  • Yesterday, my mom (who hasn’t left my house since Thursday night) deep cleaned/disinfected the entire house. I’m talking bleach and Lysol and every nook and cranny. My house smells super sterile.
  • I found my “cranial prosthesis” (aka wig). It was a great experience. The shop is owned by a woman who has been through cancer two times. I explained that I didn’t want to be old-looking or look like helmet-head, newscaster hair. I tried on about six wigs. One was a complete no, the other five were contenders. I took pictures and mom, the kids, a few very trusted friends and B weighted in. Everyone agreed on my first choice, which is very close to how my hair looks when straightened. A few positive comments on a second one (one friend called it “French assassin. Cute but sexy,” so I decided to order both. Unfortunately, there aren’t any nice curly hair wigs, so I’ll be straight for a few months. But, it’s probably for the best – if my hair grows back straight, I’ll be used to it.

Glad to be going back to work tomorrow. It wasn’t the holiday break I imagined, but I’m thankful I had the time to get so much medical stuff accomplished and have the time to process what’s going on. I feel good about where I am with my medical team and treatment plan. I feel pretty good physically and mentally.

No doctors until Friday, then it’s a quick appointment to check my blood levels and discuss how the week went. Next chemo treatment: February 6.

 

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!”