Side effects may include…

In chemo school they gave me a binder with a list of general chemo side effects. For each corresponding number there are several pages of additional side effects. They give me medicine to combat some of these side effects- and those have side effects. I even created some of my own side effects in addition to these. If there was a commercial for chemo I’m sure I would learn of new side effects.

  1. Bone Marrow Suppression
  2. Anemia
  3. Bleeding/Bruising
  4. Infection
  5. Nausea
  6. Hair Loss
  7. Appetite Changes
  8. Constipation
  9. Diarrhea
  10. Dehydration
  11. Mouth and Throat changes
  12. Fatigue
  13. Blood clots
  14. Nervous System Changes/ Neuropathy
  15. Pain
  16. Chemo Brain
  17. Hearing Problems
  18. Flu-like symptoms
  19. Urinary, Kidney, and Bladder Changes
  20. Infertility
  21. Sexual Changes
  22. Fluid Retention
  23. Skin and Nail Changes

The main side effect that I experience from chemo isn’t even listed- hypotension. Super low blood pressure. I bought one of those arm band squeeze machines so I can track it at home and the jury is still out if that is a good or bad idea. It hovers in the 70’s range. I constantly feel light-headed and on the verge of passing out.

The most painful part of chemo is a side effect of the side effect of #8- a tear in my rectum-that’s right- a major pain in my ass- the neighbors can probably hear me screaming. I don’t need to get into great detail, but I did get a thorough probing by a nice colorectal surgeon yesterday. There really isn’t an easy fix either. I take lots of hot baths, and if it’s still bad in a month, there is a potential botox solution that is not advisable during chemo. My friends, please take a moment to be thankful for your ass holes.

While I was getting probed yesterday, my daughter Luna was at the pediatrician getting diagnosed with Hand Foot and Mouth Disease. This is a virus that turns cute babies into rashy, feverish, drooling, fussy germ bombs. Adults usually carry the virus without any symptoms, but because of side effects 1, 2 and 4, I am supposed to be quarantined. I lasted a few hours without contact before I was wiping Luna’s nose and butt.

First I’m a mom, and then I am a mom with cancer.

Is this a public space for me to complain? Maybe this week. But this is real, and I’m not always a positive person. Today is my fifth day of being knocked down from round 3. Tomorrow I will be back up and at ’em.

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Wigs are FUN

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I’m bald.

I really love wigs and I’ve had a lot of fun in them, as you can see. The weird thing is I feel better just rocking the bald head so far. Sean shaved my head a few days ago. When it started to fall out I felt like a mangey raccoon. I think he was tired of cleaning out the drains. 

 

After my last treatment I was knocked out for about 5 days. My blood pressure was super low and I could hardly stand up without passing out. I think I had 5 bags of IV fluid but those didn’t really help. I was only comfortable in bed, in the bath, or in the shower. Sean even brought me a pillow in the shower- so sweet. It reminded me of a time when I was pregnant and had been at jazzfest all day and he brought me watermelon in the shower and I fell in love with him all over again. It’s the simple things.

Chemo #2 down- 6 more to go

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Getting chemo isn’t that bad y’all. It’s hard knowing how it is going to me feel- but actually getting the “Love potion” in my port and in my body is quite fine.  The fatigue and naseua is hitting me faster than it did on round 1.

If you were a fly on the wall in our kitchen tonight it would’ve looked like a happy family, covered in spaghetti, having a dance party- Luna dropping her butt like it’s hot and Oti twisting his arms and roaring like a dinosaur. And we are that happy family that we look like. The strange thing is I’ve never been happier and more satisfied with my life. Does that make this the best time to battle cancer or the worst time? Before having kids I wasn’t terrified of my own death. Now it’s not an option. Not to say I haven’t had conversations about our will, with my husband about finding another love of his life, with my sister about her help raising the kids. Nobody wants to go there, and I get that, but it is certainly a wake up call.

My attitude might change as the various systems in my body get wiped out. I’m sure I will be a major party pooper when I’m bald and boobless.

It’s been 2 months of exploration, diagnosis and treatment. Sure I’ve had a few sad moments, but I’m not sad, or angry, or terrified. I have spent most of my life being sad or angry, for the injustice in the world, for the suffering of so many, for the beauty, for the earth, sad when I feel ineffective, angry at missed opportunities to help others and on and on. I used to get furious at my mom for anything, especially if she gave me gifts- I ran away on Christmas day as a senior in high school when she gave me a laptop (it’s so unfair! some people don’t even have enough food to eat on christmas). My sister could give me a sideways glance, and I would flip out.

A family friend was dropping off matzo ball soup and was saying how tough I was as a kid. I would like to apologize to anyone that was on the other side of my wrath. I do feel like I was always gearing up for a big fight. I thought it would be a fight for humanity. Turns out I was gearing up for this fight for my life. Having stage 3 means I have to take this seriously because it’s large, it’s growing, it’s not messing around. I’m ready- my dukes are up, I’m fighting this from all angles. Some days I even fight this by taking a nap. I’m gonna nap the shit out of this cancer.

I’m fighting cancer- but I’m not fighting the universe about why this happened, I’m not fighting my doctors- i just do what they tell me, I’m not fighting my husband when he has both kids and puts one in front of the tv with cornbread for breakfast. I want to be radically present for the good times. I can’t spend all day as a mom or at my job- but when i’m up and present i want to be fully present- to the extent that my chemo brain will allow. I want to use my good hours doing things that bring me deep joy.

I’ve got a lot of tools and I’m using them all. This journal is a tool for me.There are so many people helping us and I am saying yes to all of it.

as a side note- it is crazy that there is a natural disaster and a great human need in baton rouge- i’m certified in disaster mental health and spent a year coordinating house gutting for ACORN after katrina. the non-cancer me would be fully activated to help with that fight. It’s hard to sit this one out- I really wish I was able to help.

ps- a few hairs just popped out of my head and landed on the keyboard. This new dose of love potion must be working!

pps- wigs y’all

My happy place

 

We spent a few days at my family’s country house in Kiln, Mississippi. What a treat. I’ve been feeling a little bit better! The terrible is toned down and I’m mostly just fatigued. I mean- there are other weird side effects going on too- I’m getting mouth sores, my digestive tract is whack, and my scalp is tingling so it could be any day that I lose the boy cut. The good days on chemo kind of remind me of the bad days of pregnancy; if you don’t take a nap when you are tired, you feel sick; if you don’t eat a snack when you are hungry, you feel sick; you are hungry but everything seems unappealing; you are tired, but it’s hard to sleep; emotional swings come out of nowhere; you don’t know if you are going to laugh or throw up. Basically your body as you know it has been hijacked- only instead of growing a beautiful baby, you are killing a cancer baby.

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We had a nice “normal” weekend in the country with very little chatter about treatments and a healthy amount of bug bites. So far- the kids have been handling this like champs. This weekend they started playing with each other for the first time and laughing their little heads off. They were like “mom, we are fine, you do watcha gotta do.”

 

This is what my schedule looks like this week. Keeping this body relatively healthy is a full time gig.

Monday-  Oti’s first day of school. I have blood work, yoga, massage

Tuesday- appointment with oncologist, appointment with nutritionist, physical therapy/ pilates

Wednesday- heading into the shop (Tibetan House), visiting with my 96.5 year old grandmother GiGi

Thursday- chemo (5-6 hours), NAP

Friday – physical therapy/pilates, Neulasta shot, maybe some Jin Shin Jyutsu, preparing for 2-3 days of hibernation

 

 

 

 

Chemo time

After a scheduling mix-up on Wednesday, I was practically begging to start Chemo on Thursday. I hated the anticipation and wanted to get on with it. Once I was all checked in on Thursday, it took 3 hours of blood work and premeds before I was finally given the “Love Potion”.

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And I was feeling just fine. Trying to think good thoughts and visualize this medicine shrinking my cancer. We had a family pillow fight that night. I took all of my meds like a good little sick girl.

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On Friday I was up and about- had a pilates and physical therapy session. Ran some errands, went to the grocery, popped in for my neulasta shot. I was feeling like I had this under control.

On Saturday I was at my nephews 3rd birthday party when it started to hit me. By 2pm I was in bed and pretty much didn’t get out for 24 hours. It’s hard to describe what it feels like. It mostly feels like I was hit by a bus; my skin and flesh feel bruised and sore. My intestinal track is shutting down. My face and neck are tingly. Sleeping is the only thing that feels ok. I’m not interested in food and have to choke down water.

The hardest part is being trapped in bed and hearing my babies cry, and I can’t get up. In my calculations of what Sean would have to do for the kids, I forgot that he will also need to help me. It’s going to be a long road. I broke down in tears this morning about how I can’t feel like this for 4 months. And then I felt a little bit better. And then I felt a little bit worse.

With a little help from my friends

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I have been overwhelmed with love and support for a few weeks but today put me over the top. I wish there was a way to bottle this up so I could share it with other people that have to face this challenge alone. My Facebook blew up today, my phone hasn’t stopped buzzing and dinging and ringing, there are packages on my front door, cards, hugs, snowballs, surprise buddha statues and a party. Happy Birthday to ME!!

 

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I’m working backwards here but today we went to Chemo School. Chemo School is where you sit for a few hours and listen to all of the side effects from chemo. And the side effects from the many medicines they give you to help with the side effects of chemo. I was reminded of the importance of washing your hands (I’m terrible at that), staying hydrated (I’m terrible at that), eating healthy (I’m moderately terrible at that) and avoiding contaminated food (kind of terrible at that). My plan was to go to the whole foods salad bar a lot, but it turns out salad bars are a chemo no-no. Another thing we learned of interest is that when I’m on chemo, my body fluids will be toxic. And my pee will be bright orangy-red. Toxic pee can be my super hero defense mechanism if anyone tries to mess with me.

 

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I chopped off my hair on Sunday. As usual, we made a party out of it. Otis made the cut and Charlotte fixed me up right. (She has been cutting my hair since I was 5). Once the idea crept into my mind to do it-I had to get it done as soon as possible. It was easier than waiting for it to fall out. I’m sure it will be a shock when it’s ALL gone but I don’t feel as attached to the new do.

This is the calm before the storm. The anticipation of what’s to come might be worse than going through it. Or chemo might knock the shit out of me; I don’t know. It’s easy for me to stay positive when I feel fine- who knows what the rest of this week will bring. I was supposed to start tomorrow but there was a scheduling issue, and it might be Thursday. I was bummed out- and kept telling the nurse I was ready to start- but I don’t want to spend any more of my feeling fine time being bummed out.

A few years ago my cousin Amy and I were heading to India on an ayurvedic pancha karma  healing adventure for a few months. When we told our grandmother she shot it straight and said “well, you won’t be comfortable.”

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I’m watching the olympics from bed. I think there are studies that show that watching people exercise activates some of the benefits in your brain. I’m not supposed to lift anything more than 5 pounds for 2 weeks but I will be getting a great workout in my mind.

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This is what my port looks like. The white catheter goes up through a vein in my neck.

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Post Op