The Chemo Experience

What’s it like to get chemo?

Keep in mind, I *think* I get a pretty low dose, and it’s only once a month. I don’t have a port placement. I bet that would make a difference.

I also get chemo for CNS Vasculitis (or primary angiitis if you will). That may make a difference too. I have nothing to compare it to (thank God).

Taken from someone else, but basically true.

So does it hurt? 

Only the IV insertion and blood work hurts. Sometimes they have to stick my 6 or 7 times to get a vein that works. I end up looking like a bruised up drug addict … or pin cushion … whichever you prefer. 😊 This last time they got the IV on the first try … GLORY BE!! But, it was in a spot that would occlude (causing the alarm to sound) if I bent my arm in the SLIGHTEST.

Not me, obviously, but this is how it is EVERY TIME.

It made using the restroom and eating all kinds of noisy fun!!

I USED to have the perfect vein in my right AC (reverse of your elbow), but it has too much scar tissue now from too many sticks. It has pretty much occluded itself!

Obviously not me again. This is an AC stick.

Does it make you nauseated?

The answer ultimately is “yes.” They usually predose me with Tylenol (helps with pain), Benadryl (helps with crazy side effects), a steroid (I’m going to assume this also helps with side effects)and Zofran (an anti nausea medicine). I am usually good to go after this.

The one time they didn’t predose me with Zofran, I got flushed and nauseated. It was awful. They had to stop the infusion for 45 minutes, and give me the Zofran. NEVER AGAIN, I say!! I ask for it up front!!

Does it make you bald?

This is hit or miss for everyone. My hair was thick to begin with. About 3 weeks after infusions, I start to lose it in chunks, but if just looks like I have thinning hair. If you didn’t know me, I don’t think you’d be able to tell.

Now, my hair HAS changed textures. It is like straw, and it has hardly grown in the months since I started. So, that’s interesting. 😕

Fried hair. And THIS is after straightening it!

Does it make you gain weight?

Yes.

Technically, I’m gaining weight from the Prednisone, but the chemo is playing it’s part too. I don’t even recognize myself in the mirror anymore. Seriously. This is probably the hardest part, honestly.

What else does it cause?

For about a week of two after, I can’t control my emotions. It’s almost hormonal, like postpartum depression.

 I am also very fatigued all the time. If I lay down for any reason, I fall asleep.

 The neuropathy in my extremities is on hyperdrive for about 3 weeks.  There is a lot of tingling,especially in my left foot. 

I find that my symptoms, in general, regress during this time. I have a lot of trouble with bladder control (tmi?), walking, talking, etc. 

I have headaches … a lot. I hope this is the chemo, because headaches started this whole thing, and they scare me!

Does it take a long time?

Yes. It, in actual infusion time, takes an hour and fifty minutes for the zofran mix, the pre-flush, the Cytoxan, and the flush at the end.

However, you have to wait to get an IV, wait to get your blood drawn, wait on those results, wait for the Cytoxan to come up from pharmacy, wait, wait, wait. The process usually takes five to six hours.

What do you do while you wait?

Facebook. They have plugs, so we use them for our charging cords. They also have TVs at each chair, hung from the ceiling. So there’s that. They also allow food, so J usually gets us lunch. Fun, fun! Sometimes I sleep. It just depends how I feel.

Anything else, inparticular, you want to know! I’m an open book. 😊

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