Om Namah Shivaya


Sunday, November 28, 2010

As I near the end of this journey...

I would like to leave some suggestions, reflections, and possibly some lessons learned as well. I also want to take a moment and thank the Universe and the wonderful folks at the KU Cancer Center for the shortness of this journey. I realize, *believe me, I know* how lucky I am. I found the lump at the end of February, was officially diagnosed May 14th, started chemo June 5th, ended it September 17th (with very minimal complaints), had the mastectomy and was officially Cancer Free! on October 15th (and truthfully the mastectomy/reconstruction has not been as traumatic as I thought it would be). Roughly 5 months from hearing the words "You have Breast Cancer" to hearing the words "You're Cancer Free"...incredible.

I don't know how you feel, but I think that I had a very unique approach to this whole stupid mess. I feel like I looked it in the face (after the first initial shock and awe of it all) and said "Well damn. That's one way to go about it". Then proceeded to live my life in the best way that I could while dealing with the new reality that was forced upon me.

I would like to suggest that you laugh...a LOT...when you're going through something like this. Look at the absurdity of it all and just, *laugh*. You'll find that that simple action leads you down a path towards sources of strength that you didn't know you had. Even when I was at my lowest (Chemo's 4 & 6) I still found myself laughing at myself and the absurdity of what I was having to go through. That made it easier for me to say "Huh-uh Universe! You're messin' with the wrong chick" and move on.

When your hair starts falling out have a hair shaving party. Bring together everyone you hold most dear and have them help you through the letting go of that part of yourself.

Then...after you get comfortable with the fact that you're bald, and the fact that it's falling out more each day, go out into the world without a scarf on your head. Be Brave! Be Bold! Be the confident and beautiful woman you were before you lost your hair because guess what...YOU STILL ARE! Just because you got cancer...just because *I* got cancer, that didn't stop me from being who I was and that me didn't have a scarf on her head.

Don't get me wrong. There were plenty of moments that were really uncomfortable for me after we shaved it all off. The first time out in that scarf...that was weird. I felt like everyone was staring at me and passing judgement. Were they? Probably not. If they even did notice me they probably had a passing thought as to "Chick with a scarf on her head" and no more. Yet it was weird. Then it was weird when I embraced the fact that I *was* bald and stopped wearing the scarves, and now it's weird that I'm looking at myself *with* hair, and not only that but it's getting longer with each passing day!

Get a port-a-cath implanted in your chest. You'll be glad you did. I was. A "port" is so they don't have to stick you in your arms every.single.time you come in for appointment; and believe me there are going to be LOT of appointments where blood is going to have to be drawn, and as soon as you can have one placed the better. Be aware that in the very very beginning you're going to have to "grin and bear it" and endure the numerous skin pricks for blood draws, and huge pokes for IV starts.

Stay on top of your meds like your doctor's tell you too. I never missed a dose and I liberally used the nausea medications as prescribed and thankfully besides chemo's 4 & 6 the nausea was just a dull throb under it all.

Be ready for changes to your taste. For me it was "raw pukey throat" and "sandpaper mouth". No fun, but I got through it. Have lots of soups on hand, applesauce, ginger ale, crackers and butter. That was pretty much what I lived on during chemo and even then some days I couldn't muster the desire to eat at all, but I would.

In terms of how Chemo will affect you, truth be told every single person is different. For me the immediate after effects of Chemo was the nausea, fatigue, bone pain, raw pukey throat and sandpaper mouth which lasted one week. It wasn't until about the last 2 chemo's that my energy level totally dropped, I had to do 6 cycles, and now a little over 2 months out I'm starting to get it back gradually day by day.

Staying fit. It's really important to try to maintain your normal life as much as possible and this includes exercise. I
maintained my normal workout routine until about the beginning of September and then when the energy level bottomed out so did my exercise. It's bugged me to no ends that I haven't been able to keep myself maintained, healthy, and fit, but I also understand that it's just for a little while and that what has been most important is for me to just *rest*. Now that my energy level is rising again and the pain from the mastectomy surgery is minimal I'm getting back into a routine and it feels *oh* so sweet. It's going to be fun transforming myself again over the next couple of months. New boobs HAVE to have a nice bod so back to the healthy life I go! :)

Learn to say "I just can't do that right now, I need to rest." Or in simpler terms, learn to say NO and also learn to let go and "let God". Whatever deity that you may believe in, let them take over for awhile. Let others do for you what you can't and shouldn't do for yourself. Admit your fatigue and let others move the heavy stuff, do the laundry, feed the dogs, change the sheets, clean the house. Focus on yourself and making it from the time you wake up in the morning till the time you get to go to bed at night.

When your energy bottoms out, pare your responsibilities down the bare minimum. This goes hand in hand with taking care of yourself and resting. If that means you have to take a 3 hour nap when you get home from work instead of playing with the dogs/cleaning the house/working out/playing with the kids/running errands/or one of the other billion things that needs to be done....if it means you have to let someone else do those things so YOU can take a nap; Do It. You'll thank yourself later.

I'm just going to touch briefly and lightly on this one because it's a personal and private subject but it is also something that was not mentioned to me so I feel like women in particular need to be aware...when your libido bottoms out, just remember it's all part of the greater scheme of getting you back to *you*. There are other ways to be intimate and just like your energy level, it too will return.

Back to medicines. Take the B-6 vitamin religiously during Chemo. It really helps with the tingling in the fingers. That
was a pain when it would happen because I did forget occasionally. "Chemo-fingers" are no fun.

Go slow getting back into life those couple of days you start to feel better after a treatment. For me it was exactly one week that I would feel icky then I'd wake up that Saturday morning and actually feel normal...but...if I went too fast that weekend I'd end up paying for it Monday. It was better to just enjoy a relaxing weekend while slowly getting back to eating normally/living normally, etc.

Establish your new sense of "normal" and hold onto it for dear life. Just like laughing at the absurdity of it all, you have to establish a new normal because the old one is gone and the sooner you realize that the better.

Talk about it. Blog about it. Journal about, whatever, just get it out. Get it out of your mind and off your chest. Don't hold in how you feel during the process, let go of it. I believe that's one of the reasons mine was such a short journey. I didn't allow it to fester inside of me, I got it out there for the whole world too see. Ha!

If you have to have a mastectomy go for both. Get a new set of girls and let insurance foot the bill! *laugh* Seriously though, if you do have to have a mastectomy, they're just boobs. They don't define who you are. Sure they're a part of you but YOU are more important than THEM.

If you opt for reconstruction (aka "Getting new boobs") know that the "expanding" stage is a bitch at first. There's no other way to say it. DEFINITELY take the pain meds prescribed and in the beginning you may need an entire day to recover after getting expanded. This last one I had (Tuesday before Thanksgiving) wasn't bad at all. As of now I have minimal pain and have even done a couple butt-kicking workouts with minimal chest/arm pain so that's good.

If you have drains after your surgery, go to Second Nature in Overland Park and get a couple of the post-mastectomy camisoles. You can get a prescription for them which cover's half. The two ladies that run it are absolutely wonderful and the camisoles were *extremely* handy with those drain bulbs.

When showering w/the drains have saran wrap, a couple clothes pins, and a lanyard. Have someone wrap you around your chest & drain sites in the saran wrap. Put the lanyard on and pin the drain tubes to it with the clothes pins. This makes taking a shower so much easier. Enjoy!

When you're released back to exercise post-surgery take it slow; "Let pain be your guide".

Know that you can and will beat it. It might make life inconvenient for a while and it might suck at times but it's worth it in the end. I hope that I've helped someone out there or at least touched a soul. If you've read this far I thank you for following me on this journey. We're still not done, but we're rapidly coming to a close. As I am evolving into the new me, so this blog will evolve along with me. The title may change, the colors might change, I don't know, we'll just have to see as we go along. The only thing I *do* know is that it will always be me. As the web address for this blog states, this truly has been stouts.spontaneous.evolution and I can't wait to see where I go from here.

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