Apropos of All of This and Some of That

I finally updated this little About Me page. 

Eventually, you'll see a list there of what I've been doing to heal from this illness, but for now its more like a bio. A bio of a person who is ready for summer. Big-time.

I got inspired to update it when I came across this blog. You might like that one as well.

4 down 8 to go

UPDATE: I had what felt like the stomach flu for the rest of the day. It started right after I posted this. I think I jinxed myself...doh.

This time, I refused the steroids. Best. Decision. Ever. Now I can actually feel what's happening in my body without all the noise from a monkey mind (see post below).

And on this 2nd day I can tell you exactly what I'm feeling: tired. All my bones are made of lead kind of tired.

So I have only 3 things on my list to do today, one of which is done. (Mmmmm...coffee tastes good) Anything extra is gravy. I give myself permission to honor this fatigue.

If you need anything, I'll be on the couch, or on my log chair outside, doing very little. With a big smile. And a sigh of relief.

Monkey Mind

Since I'm not a baseball player, competitive weight lifter, or looking to enhance my performance in any way, I've never delved into the wild world of steroids, nor had I planned to. I always figured I'd leave that to professionals.

Well, cancer will take you down many paths you didn't intend to travel down and these past couple weeks I have been receiving intravenous steroids once a week.

The intention with the steroids is to work with immune system so when it gets kicked to the ground by chemo, it doesn't fall so hard. It also helps with any possible allergic reaction that I may experience from this particular chemo drug.

In these two ways the steroids have mostly done their job. My white count has remained fairly stable and returns within a normal range in only 6 days after treatment. This is good, because it means I can keep receiving the treatments. As you can imagine, I want to stick to the treatment schedule so I can be done with this portion of the program.

Its also mostly kept the allergic reactions under control. I have a mild rash, which is itchy, but if I can keep from touching it, its like any other rash and will heal normally.

So I should write the steroids a thank you note, I guess.

I totally would do this (I'm old fashioned that way) but this drug has some pretty heavy side effects.

Ever head of steroid psychosis? Well, neither had I, until yesterday. After I'd explained to the nurse my strange mental state, she happened to mention it. I would say, given all that I've read about it since I heard the term, I had a pretty mild version.

I'm receiving a relatively low dose, only 25MG, but I also know I'm sensitive to medications. My body metabolizes medicines in a way I find very acute. To the medical ear, this may not make sense, but I know it to be true, even with something mild like Tylenol.

So pharmaceutically speaking, I'm a cheap date and 25MG of steroids have worked their evil magic on me. Yesterday, thankfully, I got only 10MG and can already tell that the monkeys have moved on. If I don't experience any allergic reaction this week, I'm not taking the steroids again.

Speaking from experience as a cancer patient, at the end of the day informed consent barely exists in this field of medicine.

I feel a bit bad saying this because I know my doctor and the nurses do intend to give the best care they can give. However, there is so much information that is simply not provided to the patient and I'm not sure why this is.

I'm not saying that knowing about steroid psychosis would have changed my decision to receive this medicine, but forewarned is forearmed. Had I known about it, I could have addressed it right away.

Instead though, I went through a really rough time. Alone. Too scared to tell anyone about it. And will do anything to avoid an encore performance, a la steroid style.

May it be so.

2 of 12

This is gonna be brief, I've already been writing for a bit this morning and french toast is calling.

Weekly treatments make my dance-card feel really full. I am juggling so many things right now, none of which feel like candidates which I can let fall.

Oh, don't get me wrong, I've let many go. Please don't mind the science experiment growing under my dining table or my piles of laundry scattered randomly around my domicile.

There are some though that can't be dropped nor would I want to drop them.

My Little Critter is medicine for me, so funny and fun to hang out with. He's a load of work though. In my "down time" my tired bones can be found playing "Particles," a made up game which involves scooting around on my butt trying to catch him and steal his magical box. Or holding him on my lap in the kitchen in deep conversation about meal planning.

This morning before I got out of bed we were talking about Samsara and what it all could mean. And then we talked about all the other creation and life after death myths we could think of.

Heavy stuff, pre-coffee. But I love it. That ball will stay in the air.

Hopefully the nausea will stay low-level and the raw fatigue and GI issues will follow suit. May it be so.

In my estimation I'm about 35% though this process. For that I feel so happy!

Round 2 - 1 of 12

In breaking news: I'm not nauseous!

For these next 12 treatments I'll be receiving Taxol every week. Among the biggest side effect women report is tingling in the hands and feet. Among the least reported side effects: nausea. 

I've heard this, from my Dr and the Nurses but didn't really buy into it. I wanted to experience it first hand. And viola! Here I am. I can't tell you how relieved I am. 

Maybe the other side effects will rear their ugly heads after these steroids wear off, and I'll keep you posted on that. But after feeling like I lived on a boat traveling over rough seas for 3 months I can honestly say that a little weakness and tingling sounds aok. 

One complaint I will report isn't about the Taxol at all, but about the premeds. 

I have to get crap-load of Benadryl intravenously because Taxol often causes severe allergic reactions. Luckily, I can tolerate the Taxol. I was less than able to tolerate feeling like I had just slammed a 12 pack of Miller Light and then given a rufi. It came on rather suddenly, made me feel really sick and lasted about an hour.

Since I tolerated the Taxol though they said that they will cut the Benadryl in half next time. So just a 6 pack next time then and maybe no rufi...?

Lastly, a word to those kind people who have agreed to accompany me to treatments over these next 11 weeks...we didn't get out of there until 5:15 pm. 

I think subsequent treatments will go quicker now that I've got the first one under my belt, but I wanted to let you know. This way, if there are conflicts with your family's schedule you can recuse yourself. Know that I totally understand if this is the case and that I love you.

Portal

Today I had a port installed for my next round of treatments. I have 2 freshly minted scars: one on my neck and one on my chest. The one on my neck, I didn't expect and it was a bit jarring, to be honest.

The surgery itself wan't so bad. Not eating for many hours and then being woken up from the best sleep I've had in weeks were the worst parts.

The port will make my life less painful for the next 12 weeks. So this is a case of my present self helping my future self.

One last thing, bendy straws wielded by Bryan contain the most refreshing drinks. Just saying.

Port Authroity

I am excercisting my right to whine like a baby right now.

For the record: surgery hurts way worse than you think it will. Also, having something inserted into you, like a little box for administering chemo, hurts also.

Dr said it will be at least a week before the pain goes away. In the meantime I move like molasses and wince a lot. Its a bummer.