C1D1: Everything is okay.

So we stayed up and partied last night.

That’s a lie. But it sounded good.

We laid awake for a few hours last night, sporadically talking, but mostly snuggling. Occasionally Ginny would wake up and we could hear her groggy cries on the monitor. She is normally okay at night but this cold has us ll feel a little crummy. My sweetheart climbs out of bed to comfort her. I like hearing his voice as he calms her. “It’s still dark outside, it’s still time to sleep.” He is an expert at negotiating with our toddler. He’s very warm as he climbs back into bed and I push my face against his chest, I feel safe next to him. He reminds me when I feel weak that we are doing everything we can, that’s all we can do. It’s the best we can do, and we shouldn’t stress about what we can’t do.

Though long, that is our current family motto.

 

I lamented how weird I will look without hair. He said it didn’t matter. I lamented the weather. He reminded me that it doesn’t matter. “This feels unreal.” He calmly agrees. I quoted things I should’ve avoided reading online. He patiently tells me that none of it matters. We are doing everything we can, that’s all we can do. It’s the best we can do, and we shouldn’t stress about what we can’t do.

Eventually I waited too long to speak up and his raspy heavy breaths meant he was beyond talking to. Sure, I could keep talking, and he would respond – but he’d never remember the conversation. In disappointment I resigned myself to falling asleep. I’d taken some pain medication to try and help the process, and I expected my brain to be wired, anxious, or nervous. Focus on the lack of pain in my abdomen. That means the medicine is working. Focus on deep breaths. The humidifier spouts cool mist over my head – my favorite way to treat congestion. It’s like walking outside after a cold rain in Tennessee. I like the way it feels my lungs. It feels real. In my world where every moment of the day feels unreal, breathing wet air feels real. I’m certain it will all feel real very soon.

 

I drifted off to sleep, then awoke to Ginny’s coughing on the monitor. We don’t need that thing – she’s right across the hall – but it’s like parent kryptonite. Brandan mumbled about taking care of it and I asked if it was time to get up. I took the following grumbles to mean “yes” and headed to the bathroom. After a nice pep talk in the mirror I walked back into my room at looked at the clock.

2:34am

Well… I’d only been asleep about two and a half hours. Brandan was still laying in bed, the monitor silent. It took me a little over an hour to convince myself to sleep again, I didn’t want to take another pain pill, knowing it would mean being groggy when I needed to be awake. Not sure if that pay-off was the smartest trade. Regardless, I woke up just fine at 7:30, and got in some nice Ginny snuggles.

Because Brandan had the same head cold going on we decided it would be courteous to the other patients if he stayed home, so my Mom went with me. Her car has 4-wheel drive, so it was probably for the better. So my sister Teresa came over to babysit, Brandan and his sicky germs got to sleep in then do some work, and my Mom and I headed off to the infusion center. This is the same place my neighbor received her treatments, and came highly recommended. The run down is really pretty boring, though the nurse taking care of me did a good job and explained everything to my satisfaction.

  • (9:30 am)  Access the port. This literally takes SECONDS and is painless because I have a numbing cream to use on it. *happy-happy-joy-joy*. Oh the things I never thought I could be excited about.

    Needle in, just waiting to get hung! (I’m sure that’s a thing… right?)

  • They started a nice big ol’ bag of IV fluids, an IV steroid, and a pushed anti-nausea medicine.
  • Once the steroid was done a second anti-nausea medicine was dripped. Nurse H explained that two spots in the brain control nausea, and these drugs each cover one of them. I didn’t experience any nausea – so I’m going to go with “wam-bam-thank-ya-ma’am!”.
  • (11:25 am) We finished what I am calling the “pre-meds” and then headed for the big guns, or as Nurse H calls them, “the magic potions”. Fitting, for my Harry Potter “Mudblood” reference.
  • The first drug was Doxorubicin. It looks like cherry kool-aid, and is “pushed” (not dripped) into the IV in three intervals. It’s actually quite incredible what modern medicine is capable of. If you’re a biology nerd it’s actually interesting to read how his works. It basically is like a sleeper cell that jumps into action when a cell hits a certain point of it’s replication process. In this case, it waits until the DNA has been pulled apart, then stops transcription – you can’t make a cell with half a piece of DNA, and the cell dies. This is the drug that will make my hair fall out. Supposedly that will happen in 2-4 weeks.
  • Also, Kool-aid colored stuff in your blood will change the color of your urine. Apparently I’m impeccably hydrated, because I didn’t notice it more than once and though the nurse mentioned it might look like blood I don’t think I’d have noticed if she hadn’t mentioned it.

Behold: Nurse H (pictured with permission), and syringe 1/3 of “kool-aid”.

 

  • Cyclophosphamide was next, just one syringe, very simple. I am also in awe at how this drug works… all drugs really, but I digress. From what I understand this drugs acts by confusing the DNA building process, making the DNA connect in places it should connect, which leads to apoptosis, aka: cell death. Naturally, this one is a little scarier because the problem to begin with is malformed DNA, so the goal is to mess it up so bad it must die, but there is the slight risk based on dosage for it to just… ya know… make more cancer. The risk is incredibly low (Like 1/20000), but it definitely does a number of any cell willing to drink it up.
  • Then lastly Nurse H hung Vincristine. I’m going to make you wish you’d paid attention in high school biology. This lovely works by stopping an actively dividing cell when it reaches the metaphase of mitosis. This is where the chromosomes (or should I say “centomeres”) are all lined up pretty across the center of a cell, right before those spindly microtubulars begin the next step (daughter cells!). It stops the cell from going any further though, so no daughters for you, cancer cells!
  • Vincristine was kind of a slow process. Because of my head cold they had to do it over 90 minutes. Normally they do it slowly to avoid cranial/sinus pressure – unavoidable since I already had a head ache and sinus pressure. It was mildly uncomfortable, but no worse than my standard headache.
  • Cancer drugs are… amazing. Scary, terrifying, yet amazing. They all work by killing the cell at a different point in the reproduction process. Gotta cover those bases! My cancer cells are greedy little sucks and definitely willing to “sip the kool-aid”. Unfortunately my hair, the lining of my mouth and intestinal track, and my ovaries are going to have to take a hit. Trade-off, and calculated risk. This is a risk I’m willing to take to stop the collection of tumors inside my stomach from killing me. I don’t plan on dying.

I feel normal, but kind of funny. Part of me thinks the funny feeling is just my brain playing tricks on me – brains do funny things. My real or slightly imagined side effects and on going issues at this point are:

  • Headaches. This one hasn’t really left me since the last IV push.
  • A god-awful taste in my mouth. Some times it tasted like I imagine biting a glue stick would taste like (you’re welcome for that imagery), and sometimes it’s just a nasty almost metallic taste.
  • Calling back to my preggo days, lots of bathroom visits (only 1-2 of these were slightly technicolored though… I may be disappointed). The drugs do there job, then they (and the dead cancer) need to get out of my body (pronto please). The best way to encourage this process? Hydrate, hydrate, hydrate! So on top of the IV fluids I’ve been drinking as much water as I can stand. This is also to stave off what’s called Tumor Lysis.

—-pause—

Tumor lysis is when the tumor breaks down so fast and in such large quantities that the waste (which, thinking small, like cellular level, is mostly just a bunch of salts) can clog up the kidneys. To avoid this they have me taking a gout medicine. Though I’m not at risk of developing gout, this mediation forces those salts to stay water bound. The more water moving through my system, the more opportunity my body has to get rid of the tumor waste.

—-play—-

  • Slight numbness in one hand. Apparently this is a normal symptom, but kind of scary. Massage and movement seem to help though.
  • Exhaustion. I don’t know if this counts as a symptom any more, especially since I slept so poorly last night.
  • I’m also having to rinse my mouth with baking soda and water. It’s supposed to help prevent mouth sores – a common side effect of RCHOP.

The worst of it today was really just discomfort. Thank to all of the supportive signs and messages I was attacked with I went into my Cycle 1, Day on high note. I plan to post a bunch of them here once I get another chance to hog my husband’s computer. :)

 

I feel elated. I keep thinking about the signs. It seems silly, but knowing people care enough about me to either a) run to the store and buy a poster board or b) use a poster board they had in reserve (because who really keeps poster board in their house? I’m a craft maniac and have… one… and it’s black… so it’s useless) is oddly comforting. I love it. I love all of you. Can I say that? I mean it. I love people I’ve never even met.

I feel productive. We are doing it. We are doing what we need to do. I’m doing it, technically, but I’m not alone.

My head hurts. I should probably be sleeping… but I’m stubborn. Plus, I’m only on my first Harry Potter movie of the night.

Brandan probably needs to work. And I was too lazy to go upstairs and type this on my desktop so I comandeered his laptop while he read sweet stories to our daughter before bed time… and so I should give it back to him.

My brother and one of my sisters take the cake for making me laugh with this facebook wall addition. <3

 

 

 

 

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5 Comments to “C1D1: Everything is okay.”

  1. Really glad you made it through the first day. This was very interesting! Wish no one needed this though!

  2. Sending lots and lots of love your way!!!

  3. Amazing what all these drugs can do. Keep that positivity going! <3 you

  4. Thinking of you!

  5. It’s amazing how some of the same drugs are used for different types of cancer. I had the “red-stuff” for the first 8 weeks of my treatment and I had the same reactions as you, very little notice in the urine, I was not able to take the drug in a push – they had to mix it with saline solution and give it to me in a drip to slow the process. I also have taken Adriamycin the first 8 weeks. Now I am taking the Paclitaxel and have only 3 more treatments. this is a drug that does have a side effect of muscle/joint pain, numbness/tingling/burning of the hands/feet – they say this is temporary. I have the numbness mostly in my left side (foot and hand). I use arm and hammer toothpaste which is baking soda and salt, and have not had problems with mouth sores, although each drug has different side effects and I have always drank a lot of water. Sometimes every thing has an icky taste, but I keep drinking a lot of water. Also I find I have a little bit of insomnia, I sleep about 4 hours and then take naps through the day. My port also decided to move around a little about in my 10th week of treatment. but most of the nurses are very good at finding the “opening” on the first poke, and I cant use the numbing cream, and that makes it a little more difficult.

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