Tag: chemotherapy

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.

 

 

 

 

Just be.

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image This past weekend, I had the pleasure of being with 4 amazing women from my support group “The Chemo Sabes”. Cancer made us sisters. But love and laughter makes us friends.

Thinking of how people come into your life and how things happen is quite mind-blowing. It is hard for me to believe that these women were not in my life at all BC (Before Cancer). 3 years ago I did not know them, but I feel like I’ve known them forever. They are part of the reason that I would not change a thing about what’s happened to me.

People meet in all kinds of ways, in all types of situations. At work. At the gym. Through their kids. At school. And during chemo. We’ve been through hell and back and thanks to technology, we got through that hell together. Say what you will about the evils of Facebook, but without it we would not have this bond and friendship. The Sabe Sisters (we dumped the chemo from our name when we were finished with treatment) span the country-and the globe. From Seattle to Pennsylvania. From Hawaii to New Zealand. And with Facebook we were able to be with each other at all hours, day and night. When I was on the couch, so sick that I couldn’t really do anything other than go to the bathroom, they were there, always ready to comment on a gripe. Some of us had it worse than others, but we all had our ailments. From battered nails to bloody noses. Stomach pain to bad skin. I could always count on chatting with someone that could relate.

A little over 2 and a half years ago we were all in that fragile state, watching the outside world go by while ours was on hold, but we had each other. When I was so depressed that I couldn’t enjoy good food or going on fun trips, I knew that my sisters were out there too, feeling the same way. While you don’t wish this on anyone, it does help to know you aren’t alone. It is amazing that many of us are still close, and have formed true lifelong friendships. We went from gagging on water on our couches to sipping Chardonnay on the deck watching the sun set over the water. From sitting in the chemo chair while the medicine flowed into our bodies to sitting around the breakfast table with our mugs of coffee, watching the sun come up and chatting about how Jan is about to embark on something exciting in her career and about Anita’s recent trip to Australia. From being in bed early feeling sapped from treatment to looking at the moonlight reflect on the water on a party barge singing RESPECT at the top of our lungs into the night. We aren’t dwelling on our cancer, we are celebrating the “gifts” it gave us. I can say that now that I am out of it.

Sure, we talk about the nasty c. That’s what brought us together. No one gets it like us. We know more about each other than most people know. Intimate details of the worst times of our lives. So yeah it does come up. And that’s okay. But it is no longer the only topic of our conversations.

Thinking about my weekend I can’t help but smile at the highlights:

Tina and I sharing a guest bedroom with 2 twin beds, watching old Duran Duran DVDs and feeling like we were back in high school, talking into the night. I feel like we have been friends since high school and we’ve only known each other for a couple of years. We were meant to meet for sure.

And just watching Anita dancing in her seat and singing to the music and having a GOOD TIME. Not drunk on wine but high on life.

And hearing Jan talk about the passion she has about her job and the work she does now and hopes to do in the future as she prepares to run for office. And “meeting” her precious children on Facetime.

And seeing Susan in her element at the lake–I got a glimpse of how much she thoroughly enjoys life all the time with her family and friends. We should all live like that!

I sat back and soaked it all in.

We are living our lives again.

I hope that one day more of our sisters can get together with us at these gatherings. They are truly inspiring. I still haven’t met all of the girls, but I hope to one day. It’s funny when you finally meet a Sabe that you only knew online. You just feel  like you are hugging a friend you haven’t seen in a long time.

I am happy to say the sun is shining. Again.

Looking at life through pink colored glasses

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Let me start off by saying that while I am very open about my cancer diagnosis and health situation, it is still really hard to share some of the “gory details” unless I am talking to someone in one of my support groups or a close family member. It’s sad to admit that, but there is still a level of embarrassment I feel because of where this cancer was–the ta-tas. Writing this really puts it all out there for all to see and this is kind of new for me at this level. I did a Caring Bridge journal, but I didn’t even share my diagnosis in the Facebook world when I was in the throws of treatment, only a select group of people knew what I was dealing with. And forget about posting bald pictures. I just love the women that embrace it and own it. But I was not that person.

I remember sending a few of my closest friends a bald pic one day in a text, telling them to delete it immediately after seeing it. It was like an action spy movie– I wanted the message to self-destruct in 3 seconds. One friend said that I have a cute little head. Most women will never see themselves that way, and as I sit here it is hard to remember those days, where I had to wear a wig and a hat all the time, even to bed because my head would get cold. You don’t appreciate hair that much until you lose it. I now find myself playing with it, stroking it to feel how silky soft it feels, smelling it and inhaling the delicious smell of a fresh shampoo. Because I CAN. I still go back and forth about posting the Mr. Clean look here in my blog. We’ll see. It is just so hard for me to see myself that way, looking sickly, though I know it was necessary to get me to where I am right now. Alive.

I believe in intuition and gut instincts. My mom, working for oncologists for most of her career, always harped on me to do self-exams through the years. She even gave me a fake boob (a foob), made of squishy rubber with hard little lumps in it to practice on. Even well before my 40s she stressed the importance of this, telling me that you could get it even when you are young. So I got to know my girls pretty well.

I was always well-endowed. And dense. And lumpy. And always had this odd feeling that one day I was going to get the dreaded C. And I did. I just thought it would be years down the road from now maybe in my 60s. Not when I was 44. I always wondered when my time would come. I guess that’s why I never asked myself the “Why Me” question, I always asked “When Me”. Even though I had a feeling those ta-tas would cause me the ultimate grief, I was still in complete shock when it happened.

I’ve never been fond of my “jugs”. Being bigger on top meant that I could not wear some of the cute tank tops that I would see friends wearing in the summer. Being bigger meant if I wore something a bit tight, I would get comments, ogled at, pointed at and yes, called names. So I became very self conscious over it, covering myself up with baggy clothes and turtle necks. I always said I would love to get rid of them. Well,  I did get rid of them. Completely. Maybe they were pissed off at me for not showing them much love over the years, I don’t know. But I have a new set and quite honestly, I really like them! Out with the old, in with the new. I don’t have to go for mammograms any more and that is huge. The first time I went for one after this all happened, I had hot flashes, felt like I could not breathe and was having major heart palpitations. PTSD. I get it any time I go to a doctor now, but to get the mammo again was pure agony for me.

October is Breast Cancer Awareness Month. Women need to be aware and check themselves along with the mammos. I found mine myself, because I had that little mom-voice in my ear telling me to always do a self-exam. But I feel that this month should not be just for talking about breast cancer. If you are one of those folks that just does not go to a doctor, you need to start. Get the dreaded tests, as crappy as they are, that come with age. If you think something is off, your gut will usually tell you what to do. Mine did.

Along with this month comes a lot of pink stuff. Friends of mine that have gone through cancer have mixed emotions on this. Some do the walks waving pink survivor flags wearing pink from head to toe, while others call it “stinktober”. I don’t participate in all of the pink activities but I am not against them. I just wish there was more awareness about other forms of cancer, more focus on metastatic cancer, and focus on rare illnesses that don’t really get any attention. I don’t walk around in a pink haze. I don’t go out and do the events. And pink is my least favorite color. But I am writing about it. And if that helps just one person, I’ve accomplished something.

Of course, I have to end my blog with something Duran related (because that’s what I do). So in honor of this month, here is a song called Sekret Oktober. I am going to make you non-Duranies fans, you will see!