Friday, March 23, 2018

Sleep - It's Me This Time

Sleep can be so difficult. There are moments when I'm sitting in the recliner, surrounded by my family, enjoying a television show and I can't keep my eyes open. Sleep descends upon me like a warm blanket that I can't resist.

Then, the very next night, I will be lying in bed, bundled under five blankets, unable to get warm, rolled into a ball of misery and I'm trying to wrestle with sleep, to grab it and force myself into slumber. Obviously, that doesn't work.

I like the quote from The Fault In Our Stars when Hazel compares falling in love with Augustus to falling asleep. "It happens slowly then all at once."

Olivia insists she doesn't know how to sleep. That child hasn't had a nap since she was two years old. Even during her bout with the flu a couple of weeks ago, she never napped.

The other night, she was awake until midnight. I kept telling her to go to sleep. She kept saying, "I don't know how." I would tell her to just close her eyes. She's reply, "But even with my eyes closed, I can still hear things."

I mean, sure, that's true, but sleep won't come if you don't close your eyes.

Or will it? Sleep happens even when people are trying to keep their eyes open so...there goes that rationale.

Anyway, this chemo thing/not working thing has screwed up my sleep schedule. I usually don't fall asleep until at least 1am. Then, on school days, I get up at 6:15 to get the girls up. I usually go back to bed at 7:30 once they are one the bus and sleep until at least 10:30. Yeah, I'm a mess. My whole days are spent recovering from not getting enough nighttime sleep and then I can't sleep at night all over again.


Thursday, March 22, 2018


Did you know there is a heroin epidemic? Yeah. It's sad.

Also, a lot of people are diagnosed with cancer every single day. In fact, according to google, approximately 12.7 people are diagnosed with cancer each year.

The other day Tom was watching the news. I happened to hear one particular segment in which someone politician was saying that we need to set up clinics where heroin addicts can go for treatment of their addiction regardless of whether they can pay for that treatment.

Now, sure, let's do that.

But let's also provide cancer patients with treatment regardless of their ability to pay.

Did you know that in January, right before my third dose of Taxol, I was informed that the remaining ten treatments were going to cost me $5000 out of pocket? Obviously this is because it was the beginning of the new year and all the things I'd paid for the previous year were wiped clean and my out-of-pocket expenses were starting over. I had to meet my deductible of $5000 all over again before insurance was going to start paying.

Yeah. We don't happen to have $5000 laying around. I hope others do but I know that we don't. I mean, sure, we can pay our mortgage each month, we can pay for electricity and put gas in our cars. We are also able to pay our homeowners and auto insurance and still buy groceries each week. I know we're definitely more privileged than so many but we absolutely don't have an extra $5000 in our bank accounts.

I'm so incredibly lucky to have amazing people working on my side. The clerk at the hospital with whom I spoke about payments looked into a program for me and less than a week after I met with her, I got approval from an outside company that covered the entire $5000 for me. Again, SO lucky, I know.

I mean, let me just point out that every single blood draw I had to get prior to chemo (so, yes, weekly blood draws for anyone counting) cost $24.60. And that is out-of-pocket because they were taking place in January and February. It adds up.

I realize that addiction is as much a disease as cancer. I do. You know there's a but coming right? some point, most people addicted to heroin made the CHOICE to take the drug.

Cancer isn't a choice, at least not for most. I suppose one could make the argument that smokers are choosing to inhale carcinogenic matter into their lungs and thus choosing to get lung cancer.

But for most cancers, it is not a choice. And yet...we pay and pay and pay for our treatments.

What I'm saying, what I already said in the fourth paragraph (does a single sentence count as a paragraph?) is that cancer patients should receive treatment regardless of ability to pay.

When you're battling cancer, you've got a lot on your plate. Paying for your treatment should be the last of your worries.

Wednesday, March 21, 2018

How's My Hair Wednesday - Two Weeks Post-Chemo

Picture #3, two weeks post-chemo. Okay, to be fair, today I was wearing makeup because I had to take Alyssa to the dentist for a filling and some sealant for her teeth now that they're no longer covered by braces. And I didn't want to frighten the dentist's wife, who works as this receptionist/schedule.

So, yeah, there's that.

When I have enough pictures (like four or maybe six?) I'll post a compilation of them so we can see progression of my great white hair as it grows.

Here we go:

Tuesday, March 20, 2018


I am 12 days past my last chemo. (I'm writing this on a Sunday.) And yet, right this second, I actually have more pain than I did during the twelve weeks I had weekly chemo. My pain was pretty constant during the first eight weeks of chemo, when I was receiving the cocktail drugs. That was pretty bad. But the last twelve weeks weren't so bad.

This past week has been...tough.

It started on Wednesday, a week and a day out from the last chemo. That afternoon I noticed a weird pain just to the right of my belly button. It wasn't constant but it was definitely noticeable.

I googled this and it said that it can be a precursor to appendicitis. Yes. So obviously, I've been super aware of any and all pain in my right side.

And what do you know? There is pain in my right side. But I don't have a fever, the pain isn't constant. It's more intense at night when I'm trying to sleep. I notice it a lot when I get up to pee in the middle of the night.

My lower back is bad at night too.

I just don't know if I should say something to a medical professional about all this weird pain. I mean, it could just be the chemo making it's way out of my body. I mean, that would kind of awesome, painful but also awesome.

Then again, it could also be something different, some more nefarious.

But which doctor do I tell? I don't feel like I'm actually a patient of my oncologist anymore since I'm not actually receiving chemo. Though, wait, I do have an appointment with him in early May. So yes, he's still my doctor.

Do I just call my regular doctor? I haven't see him since he told me we should wait and see about the pain in my left breast so...I don't really have all that much confidence in that dude, even though I understand why he said what he said and I don't really hold it against him, even thought I obviously kind of do.

Do I wait until my first radiation appointment, which is in a week and three days? I could tell the doctor in charge of the radiation about all these weird pains.

Of course, I could call the cancer center tomorrow and talk to a nurse, who would tell me whether it's even worth discussing any of this with a doctor.

Obviously, if the pain in my side gets worse or if I spike a fever, I will call my regular doctor or heck, even go to the emergency room. But right this second, the pain is more of an annoyance than a real fear. Kind of.

Monday, March 19, 2018

YouTube Black Hole

Speaking of YouTube, the other night, I kind of fell into a black hole of YouTube videos. I was watching the latest update from a family member who is the caregiver for her wife. This led to some suggestions from YouTube. Oh, don't follow those suggestions...

I did, though. I found one YouTuber in particular who'd been diagnosed with triple negative breast cancer. Hers was further along than mine. She ended up dying from it.

I know.

But her videos were still helpful. She's the one I'll be watching again to prepare my skin for radiation.

One video, though, gave me goose bumps. I felt like she was speaking directly to me. She'd just told her viewers that her cancer was back, that it was in her liver. She was, at that point, considered terminal. She was still fighting though. She was going to make that damned cancer work hard to take her life.

She was looking in the camera and explaining what it meant to be terminal. She said something like, "Look, if this cancer had been a single small tumor in my left breast, if I'd had surgery right away and followed up immediately with chemo and radiation, I might have beat it. But we caught it later than that."

She made the choice in the beginning to try and fight her cancer, which I believe was stage 2 (maybe 3?) when it was found, using natural methods such as herbs and supplements rather than chemo and radiation. This gave her cancer several months to grow before she had to start the traditional treatments.

But when she made that comment about the tumor being a single, small tumor in her left breast (hers was actually in her right breast) I felt like she was speaking directly to me. I felt like she was telling me (years before I even got diagnosed with triple negative breast cancer) that I was doing everything right. That I am going to be just fine.

I have to believe that. Why else are we doing all this?

My port comes out in six days.

Saturday, March 17, 2018


I start radiation in about a week and a half. My first dose will be on Wednesday, March 28. This is Tom's brother's birthday. I only note that because it seems like a lot of my firsts/lasts have landed on birthdays of relatives. Of course, when you have as many relatives as Tom and I have, well, it's probably not that unusual. My first chemo was on my cousin Aaron's birthday. My last chemo was on Tom's older daughter's birthday. It's just a coincidence I wanted to note.

So yes, March 28th will be my first of 33 doses of radiation.

I will receive these daily, Monday through Friday for about seven weeks. The first 28 will be very localized, pointed pretty much directly where my tumor was. The last five will be more general, pointed at my left side. It is these last five that could cause the most damage to things like my heart and my ribs.

I've been told that I need to begin a heart-healthy lifestyle when radiation is over in order to protect my heart, which could very well be damaged by the radiation itself.

I was also told that the radiation will weaken some of my ribs. I shouldn't be surprised if, a year from now, I'm coughing and feel a painful pop. It will just be my ribs cracking. Nice.

The biggest issue, though, according to my radiation nurse and doctor, is skin damage. They gave me some cream I am supposed to apply three times a day after the radiation is administered. This will help ease some of the burning to my skin.

When I took the donuts to my chemo nurse last Tuesday, I mentioned that I start radiation in about two weeks (from then.) I said that the nurse and doctor said it wouldn't be nearly as bad as chemo had been.

Kyla, my chemo nurse, said, "Don't believe everything you hear."

Huh. Okay then. Obviously, I will report often on how it's going.

I've watched more than my share of YouTube videos lately. One in particular was very helpful regarding radiation. I will be going back to that one in the next few days as I prepare for radiation to start.

So yeah, that's where we are right now.

Friday, March 16, 2018

Shrek The Musical

I feel bad that I didn't mention this earlier but well, we've had a lot going on so...that's life, right?

Alyssa participated in her school's musical this year. She was amazing. She had several roles and a couple of solos. The musical was Shrek.

Alyssa was Blue Bird (she got to pretend to explode on stage.) She was also Humpty Dumpty (she got to sing loud and proud.) She was a Dulok Dancer. She danced and sang so well in an awful yellow wig. And she was one of the Three Blind Mice, backing up Donkey during a song.

She worked so hard, as did the rest of the cast. They started rehearsing in January. They had so many songs to learn, so much choreography, so many lines.

My mom and I helped with costumes (I sort of helped, my mom did most of the work.) And I helped with makeup. That was great fun. Getting to see the behind-the-scenes of this amazing production made me appreciate it that much more.

I am so proud of Alyssa. She's really making the most of her freshman year of high school. She's taking part in so many things, from honors choirs to the musical, to track. She's gone to contest with the band, she's been in pep band, marching band, and just hung out with friends. She's enjoying life and that's what I want for her.

Now...if she could only find a rich benefactor to give her a new phone, her life would be perfect.