Tag: cancer support

Hair

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Seen better times than right now
But I’m not runnin’ away
No nothing’s gonna bring me down

It’s just been one of those days…

 

This past week, I was able to put my hair up in a ponytail for the first time in over 2 years. That’s progress!

Someone at work commented on my hair the other day. “Wow it’s getting long!” Flashing her my boyish photo on my work ID, I replied “you could say I’ve come a long way from this”.  She smiled, and asked the million dollar question. “What made you cut it so short?”

I could have just said something like “well I was going through a phase” or “wanted to try something new” but I have a hard time lying. So I fessed up and told her about my treatment.

I remember that part of my journey through hell vividly. It was the worst part for me, worse than surgery and treatment itself. Everyone with cancer handles this differently. Some people I know proudly showed off their bald beautiful heads. But not me. I think for me, it was officially telling the world I was sick. And I didn’t want people to know.

Grab a handful of your hair. Give it a firm tug. Kind of hurts when you do that, right?  Now imagine taking that same handful of hair and pulling it, but instead of feeling an ouch, the hair just comes out with ease and no pain. You never think you will experience that. You never think you will know what your head looks like without hair.

I remember when I started wearing the wig, I still had hair underneath. My long thick hair had been cut very short by my stylist in preparation of the big day it would start falling out. When I came home after work, I could not wait to remove the itchy wig and let my head breathe. Every day, I would give my hair a tug to see if it was the day. I remember the first time I pulled and didn’t feel the usual resistance, it was still shocking even though I knew it was coming. Once it started falling out, I would just sit down at night and pull out clumps, just wanting it gone but not ready to shave it.

One day, I pulled the wig off and it was really bad. I had hardly anything left, and what was there was  really thin and limp. There was no reason to hold on anymore, so I asked my husband to get the clippers. I cried, I laughed at his bad jokes. But we got rid of it.

Here are some of my wig looks and the first time  I went wigless in public when it was growing back. That was rough, but I was on a cruise so no one knew me. Not ready to share the bald look, but I will eventually. It is still hard to see myself like that.

On Halloween, I was trying to put together a costume. I thought a wig would make the look, but the thought of wearing one again gave me the chills. No thanks.

Free

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I will never be free. Anyone that has had cancer knows what I am talking about.

When you finish treatment and get the NED (that’s no evidence of disease) word from the doctor, you are like “what the hell am I supposed to do now?” You are no longer getting toxic chemicals pumped through your body to kill the cancer nor do you see the doctor every three weeks, which leaves you  feeling a little alone. You feel like you should still be doing something about this horrible thing that set up camp in your body and tried like hell to kill you. You feel like it will eventually escape from prison and wreak havoc all over again.

Being free is when you have no further contact with something or someone that was holding you back or bringing you down. That burden will no longer be in your life at all. You have cleansed yourself of the negative energy and moved on. Not so much with cancer.

Before this all happened, when a mystery ache or pain would hit me I would just think it was a strained muscle, or maybe bad posture was the culprit. “I must have pulled something or slept wrong”. But not now.

I remember right around Christmas, about 10 months after I was diagnosed and treatment had ended, I started to get this awful pain in my left arm. If I reached into the dryer to pull out clothes, the pain would shoot up my arm and it was more intense than anything I had ever felt. When asking the doctor how I would know a pain could be metastasis (mets), she always said look for new pain and pain that was different from anything I had experienced. Well this was both of these things, so I was pretty much convinced. I told my doctor who then ordered an MRI. She didn’t think it sounded like bone mets, but I didn’t believe her (I have had medical professionals tell me the wrong thing before, so this could be no different). I was a nervous wreck, Googling bone mets and where they can land. Large bones were mentioned. Shit.

I was already prepping myself for more rounds of chemo and possible death.

After waiting what seemed like a year, the test determined that I had frozen shoulder which would eventually go away with a shot and stretching. I couldn’t even believe that it wasn’t mets. A relief for sure, but I wondered when the next scare would come.

I got my routine blood work at my 3 month check up a year later. My liver enzymes were high again, a little higher than they had been. The doctor said, “I really don’t think it’s anything cancer related because your enzymes had gone up and down before cancer, but we will have it checked out.”

Hi ho, hi ho it’s off to another test I go. Only I wasn’t singing and whistling. The waiting, the thinking about how I will handle the grim diagnosis when it comes. Again, I was prepared for the worst news. I wouldn’t be caught off guard again.

Results were in. They found nothing. Whew.

What a freaking rollercoaster ride. Any time I have an ache or a pain, the logical side of me tells me that there is a reason for it and it’s not the pain she said mets would be, but the scared me goes to the dark side. I usually talk myself down off the ledge or call someone to help me with that. Eventually the pain eases and I know it’s not mets. This time.

PTSD doen’t only haunt people who were in combat. It strikes people that have had a health crisis too. It’s not a loud noise that scares me, it’s a new pain. Or feeling off. Or feeling nauseous or tired. Those things give me nightmares.

At our meetup last weekend, we were talking about the whole cancer free thing. I was asked “how do you respond when someone asks if you are now cancer free?” I never know what to say. I usually say something like “for now” or “as far as I know” or I just shrug my shoulders. You just don’t know for sure if there is a cell swimming around in there waiting for a place to call home. You don’t know for sure if that stiff neck is just from bending over a computer all day or if it’s something serious.

People that have had cancer will never be free. But hopefully, as the years go by, we will stop panicking over every pain and move on. Maybe this fear will be a thing of the past.