Chemo Experience 101

Just coming out of my latest chemo experience, I thought I’d share a little about what I went through on the last few days (3-7, by my last account). The last time I mentioned it, I was beyond day 7 and I felt super awesome! I’m a liar. It sucks.

I was nauseous the entire time (days 3-7 were worst). Smells were awful, I could barely enter the kitchen. My kids were fantastic, but ended up watching more TV than they do in a ‘normal’ month. I ate because I had to so I didn’t throw up. Vitamin water is REALLY hard to open without the assistance of 2 smaller children taking turns after my initial, unsuccessful attempt. I was exhausted and needed to nap, no debating.

Maybe this time was different from most because I traveled, I stayed up until midnight on day 3-4 (Taylor Swift concert with 3 kids – lots of bright, flashing lights, light rail experience both ways), I had to get up at o’dark thirty to get to an Avistan infusion on day 6, I was finishing my lady time (TMI, I know). But it all worked together to drive my chemo experience into the deep dark underground of hell.

I know there are people who can do this without skipping a beat. One of my daughter’s teachers is fighting breast cancer and stated, ‘I get my infusions on Tuesday, so I might be tired the rest of the week.’ WHAT?! I have 7 days of hell each month and I complain. I’m a wimp. I’m alive, but a wimp. I’m a stay-at-home mom who’s a wimp. She’s a working TEACHER and she’s got balls. I bow to her strength and perseverance in light of what she’s fighting with amazing courage and ballage. And she’ll likely lose her hair.

So, I’ll complain in my wimpiness and then I’ll move on.

Moving on now.

The Downside of Stopping Chemo

I’ve had my last round of chemo (for now) and I’ve talked about why that’s a good thing, but I realized there may be a downside to it – aside from the obvious anxiety of my tumor coming back – which, let’s face it is there with or without chemo.

Here are my top 5 reasons stopping chemo is a bad thing:

5. I may no longer have an excuse for not cleaning the litter box (and I probably shouldn’t have just admitted that.)

4. I can’t use ‘I’m on day 4 (5, 6…) of chemo’ as a reason to leave the room and take a nap.

3. I will have roughly one less trip up the beautiful 280 freeway per month and will, as a result, see fewer deer and running cows.

2. My reasons for buying frozen vegan enchiladas for ‘easy comfort food’ because I’m tired/nauseous will be over. Now if I buy them, I’m just lazy.

1. My psoriasis will come back in full force. I will again leave a trail of flakes behind me as I leave the room. Shampoo rotation is now in full effect (dandruff shampoo doesn’t understand my problems – so don’t bother suggesting it.)

the_breakfast_club_timedandruff snow

 

Camping With Chemo

I just took my last dose of chemo for this round – supposedly my last round.

Though I had planned on starting after we got back from our camping trip – my low platelet delay gave me some flexibility in when I started my ‘last’ round. Call me crazy, but I decided to get it over with, even though we were going camping. It went so well the last time I had the new lower dose, I figured why not? So, I experienced days 2, 3, and 4 at the beach and until today (day 4), it went remarkably well.

So, I thought I’d share some pointers on how to get through Camping with Chemo.

1. Prepare and freeze all of your meals before you leave home. It makes meals SUPER easy and they double as ice in your cooler.

2. Bring plenty of fresh fruits, veggies, and comforting protein snacks.

3. STAY HYDRATED!!! And then drink another bottle of water. And then another.

4. Do NOT expect to climb any mountains – or even large hills or driveways, you will be disappointed. My brother, who’s not on chemo, DID climb a mountain this weekend – Mt. Williamson, a Fourteener – and he was NOT disappointed.

5. Bring your pillow and don’t be shy about bringing a nice comfy air mattress. Good sleep is IMPORTANT if you plan to camp with chemo.

I had a great time and until we were all packed and ready to drive home, my energy level was good. I think some sleep deprivation (no air mattress) and not enough breakfast before the hard work of packing up camp triggered a headache and exhaustion.

Some non-chemo related advice for good camping fun…

1. If your eldest child has grown 7 inches in the last year or so – i.e. since the last time you camped – make sure she still fits in her junior sized sleeping bag. Ours did not and some serious negotiating commenced to get her brother to switch bags with her…he was convinced he should be paid to make the switch. He was NOT paid and despite his predictions to the contrary, he survived sleeping in a red sleeping bag.

2. If your eldest child says that we might want to get our smallish, short haired dog a sweater because we know it’s going to be cold…believe her. I can’t say I’m a fan of pet clothing and while our dog will willingly be dressed in a tie, I didn’t buy him a sweater. He needed one.

3. Leave all of your electronic devices at home. We had 5 kids who climbed trees, rode scooters, played games, and enjoyed each other’s company.

4. When you camp at the beach in Northern California, you can go from very cold and foggy to hot and sunny in just a few miles – be prepared with layers.  Also, even if you’re camping NEAR the beach, you’ll get sand everywhere. Be zen about it.

5. The Hula part of our new Kelty Hula House tent CAN be used as a hula hoop.

Kelty Hula House

Kelty Hula House

Happy Camping – with or without chemo.

Friday Morning Feelings

Feeling really glad I didn’t book a flight for first thing in the morning. My beautiful daughter and I are sitting around the table eating breakfast, playing Fashion Story, waiting for the dryer to be done so we can finish packing before heading off on our girl’s weekend.  

Feeling cool and enjoying it thoroughly before we enter the heat of the desert (where it doesn’t cool down at night like it does in N. Cali).

Feeling grateful for awesome neighbors who made (once again) a front yard party one of the funnest things ever. Be jealous, it’s ok.  

Feeling confident that the next round of chemo with my new lower dose (starting Sunday night) will be a breeze. 

 

Waiting For My Toxins

Assuming my platelets are cooperating, I’ll start my next round of chemo tomorrow.

I, being forgetful (or a master procrastinator), waited until the last minute to order my refills. My particular brand of toxins have to come from a specialty pharmacy, they deliver them right to my door. They scheduled delivery for this morning. That’s how specific they get with the delivery window – ‘Tuesday morning.’  Of course, receiving my toxins requires an adult signature. So, I quickly ran my kids to camp and left a note on the door saying I’d be right back. An hour and a half later, they’re still not here. Did I miss them? They don’t leave a note like UPS. What’s their definition of morning? Will they be here before I have to go pick up my child who doesn’t want to ride the bus 45 minutes away to sit on the side of the pool in the wind and rain? What if I get in the shower and THEN they come? What if I’ve missed them? When will they come back? What if they have to come back tomorrow morning? I’ll be at Stanford visiting the vampires, peeing in a cup, and chatting with my Neuro-oncologist about my platelets and his cruise to Alaska. What will I do if I don’t get my toxins in time?!  (Run around the room in a panic waving my arms in the air)

I understand I’ve brought this on myself because I didn’t order them sooner. I don’t like generic delivery windows. I’m impatient, I don’t like waiting around…even if I was going to be home anyway.

I guess I’ll just go ahead and do some laundry.

Let Me Off This Ride!

I’m finally feeling reasonably human again after this round of chemo. Maybe it was just that I was feeling so good and the shock of it was greater. Maybe the month off cleared so much of the previously ingested toxins out of my system that it really just hit me harder.

I took my first dose on Tuesday, by Friday night I was constantly nauseous – in spite of my efforts to stay ahead of it with my anti-nausea medicine. I couldn’t eat more than saltines – even my ‘go to’ toast with PB was disgusting. I couldn’t open the fridge without gagging. I already have super smell (NOT a super power it turns out), but this goes way beyond my normal sensitivity. I was exhausted, my mind was foggy. Every time I tried to do something – say shower – I needed to lay down after. I spent Friday night, Saturday, Sunday, and most of Monday in bed aside from brief forays outside or to the kitchen to refill my water bottle.

My husband became a single father and did an amazing job. The kids were anxious and worried – though they didn’t say it outright – and it showed in their behavior. He handled it beautifully – keeping them busy, teaching them lessons of why you shouldn’t beat on your sibling, giving them space to feel whatever they were feeling. All while keeping his cool and taking care of me – mostly just letting me sleep/wallow in my nausea.

It wasn’t fun. I don’t really want to do it again. I will if it means keeping the beast locked behind a door, but I don’t want to.

I wonder what the REAL definition is when the doctor says you ‘tolerate’ Temodar well. Does he mean it creates the ‘normal’ level of hell or does he mean it doesn’t kill you? I’ll have to ask him when we see him again on the 15th in preparation for the next steps.

Until then, I’m going to eat a lot to try to regain the weight I’ve lost (never thought I’d say that), enjoy the beautiful weather, hug my kids a lot, kiss my husband, and relish some glorious between days.