Hairy Journey

Back in the day I used to love watching the show What Not to Wear.  I hated the part where the person got ridiculed for their wardrobe and overall appearance, but I loved the endings where the transformations happened.  I always thought the biggest change came with the hair though.  I would always say, "Hair makes or breaks a person!"  I still think hair has a lot to do with one's appearance.  P.S. Clinton Kelly is my spirit animal and I want to be friends with him.

In the last year my hair has gone through a roller coaster ride!  Let's take a look at what my hair USED to look like, back before any chemo entered my life.

For as long as I can remember, with the exception of a short stint in high school, I have ALWAYS had bangs, and usually swept to the side in my adult years. I've also always had straighter hair with a touch of a wave, but nothing a quick swipe of the straightener didn't fix.  I never colored my hair  (also except for a few times in high school), and in recent years my hair was never really past my shoulders.  

When chemo entered my life, I knew I would lose my hair.  When I started losing my hair and before it thinned out too much, I had Eric shave it off.  Looking back that was definitely a control move.  "I'm not going to let you dictate when I lose my hair, I'll shave it all off!  How do you like that?!"  It was kind of like the person who quits their job just before they're about to get fired.  My last chemo session was in early June, but the effects still ran their course through June and July.  It wasn't until August that I started getting any real hair back.  

I was warned that my hair may grow back curly.  When it first started coming in I thought, oh it's still straight, no biggie.  But towards November and December as it grew more, I did notice the curls.  People would see me and ask if I had curly hair before.  Nope!  My favorite was my oncologist asking if he did that to me or if it was always curly.  

I enjoyed the curls!  It was kind of fun having something new that I had never had before.  I had to learn how to take care of the curls and it gave me a sense of...wildness.  I always admired women with curly hair and they always seemed like they had this wild spirit inside of them.  I think it's beautiful!

But alas, that was not the permanent ending for me.  Around April I noticed my hair growing straight at the roots again.  So as I was trying to grow my hair longer, it was just looking like a really bad curly mullet and I couldn't help but feel a striking resemblance to A.C Slater.  Sometimes I would even sit on a chair backwards to get the full effect.

Those dimples, though.

I kept hemming and hawing over what to do and if I should get my hair cut or just let it keep growing.  It also didn't help that my stylist I'd been seeing for years wasn't cutting hair any more, so I had nobody reliable to go to.  Then a few weeks ago I was at Julia's swim class, and quite impulsively called a salon near my house and asked if they had room for me that same day.  They did.  So I went.  My stylist explained that it looked funny because the body of the hair should be at the roots, but my hair was straight, then body at the ends.  She straightened it with a brush and hair dryer to get rid of the curl, and the cut made my hair look intentional.  While I loved how she styled it, the problem lay in the fact that I am not an octopus and couldn't recreate what she had done.  Also, the humidity lately didn't help the curl factor.

So off I went again a few weeks later.  I asked if she could just cut the ends off, eliminating all of the curls.  She complied and I ended up with much shorter hair than I would had I left it alone.  However, it feels SO GOOD to finally have what I feel is MY HAIR back.  I feel like me again!  The curls were fun, but it felt like I was trying something on that didn't belong to me.  It feels good to be back.  

Here is a visual progression of the past year:

And, the before chemo vs. current situation side by side (of course, both in Cubs gear):

It's pretty remarkable how hair (or lack there of) has had an effect on how I feel and my self-image.  I honestly didn't feel self-conscious when I was bald, but more so these last few weeks when my hair was behaving like an awkward 12 year old.  People also ask me why hair comes back curly after chemo, as it occurs 90% of the time.  I did some research, and the answer is: nobody knows.  One article I read said that not many studies have gone into it because they'd rather spend the time and money figuring out a cure and better treatments for cancer.  I can get behind that.  

Here We Go Again

For over a month I've had a small, scaly, red patch on my left breast not too far from my lumpectomy scar.  I kept an eye on it and would put lotion on it after my showers, hoping it would go away.  Yesterday morning I noticed it hasn't gone away, but grown.  I showed Eric and told him rashes could be a symptom of breast cancer, and he told me I should call my doctor. 

I called my oncologist's nurse, Barb, and left her a voicemail describing the rash and asking if it was something to be concerned about.  It was a crazy day at work, so I didn't get a chance to answer when she called.  But once I had a spare moment, I noticed I had two voicemails.  One was from Barb saying that Dr. U wanted me to get it biopsied in my breast surgeon, Dr. G's office.  The next voicemail was from Dr. G's nurse trying to schedule the biopsy for the next morning. 



Really poor picture of the rash.

I called back and took the 9:30 for today.  This is when I started to get a little worried because I thought initially I would be told to hold on until 2 weeks later when I had a routine follow up scheduled with Dr. U.  The fact that he wanted it biopsied without even having seen it, and so soon, was kind of a red flag.

So then of course I go to Google.  Eric told me to stop searching, but when you feel powerless and out of control, you seek out information to gain some sort of control.  I googled, "rash on breast."  A slew of hits come up for IBC: Inflammatory Breast Cancer.  It's a rare and very aggressive form of breast cancer that impacts the lymphatic system.  The stats scared the hell out of me.  Automatically staged at a 3 or 4, and 1 in 3 cases when diagnosed it's already distant somewhere else in the body, and life expectancy is an average of 57 months for stage 3 and 24 months for stage 4.

I found a friend at work, cried and prayed with her, then found my boss and cried and prayed with her.  Then I went home for the last 2 hours of my day because I just couldn't focus.  As I was driving home I thought to myself, "I don't know if I have the fight left in me to do this again."  The fact that the thought entered my mind scared me.  I don't like thinking I can't fight it.  I stopped at McDonalds and got myself a McFlurry and then hunkered down on the couch and watched I Love Lucy.  I picked up Julia, and of course that made me feel better to see and be with her. 

When Julia was in bed, Eric and I talked.  He hates talking about the possibility of me having cancer because he believes if he doesn't talk about it, it's not real.  Which then creates conflict for us because for me, I can't not think about it, and it's helpful for me to talk it through.  So what we both need is conflicting for the other.  We did talk about it though, and I told him how scared I was about it being IBC and this could be it.  We thought outloud about what we would do and how sad it would be for Julia to not have me around growing up.  He said, "She misses you when you're gone for an hour!  I don't know what I'll do if she says she misses you and there's nothing I can do."

I didn't sleep well, and I cried a lot, to the point where my pillow was quite wet.  But I went today, and Dr. G was great.  She said she agreed we needed to biopsy it, and by looking she couldn't tell if it was a recurrence or just a dermatitis thing.  I asked her if she thought it could be IBC and she said, "No, I see a lot of that and that's not what this looks like.  If anything it's a local recurrence and then me and Dr. U will talk about what to do."  That alone was a relief to me.  IBC felt like a death sentence.  A local recurrence I can do all day long. 

So we did the biopsy and she used a scalpel to take a chunk of the skin, put a dissolvable stitch in there, and that's it.  I'll find out Monday or Tuesday.  But I feel like I can rest easy this weekend knowing it's most likely not IBC and it could just be a local recurrence.  I've done every treatment there is, so now nothing is foreign to me. 

Biopsy #4 - check!

I pray that it's nothing.  I pray that I can have a carefree summer unlike last year.  I want to fly kites with Julia, blow bubbles, garden, swim, go to a Cubs game, and just enjoy life.  But what I realized yesterday, is even if it's nothing, my cancer will always follow me.  Always.  It's always a factor, even if it's nothing and we have to take every precaution.  So here's to the weekend, prayer, and hoping I just need to buy some cortisol cream. 

Progress

Every, single, day I think about my journey through cancer.  But today, and this weekend, it's more than usual.  It's a year ago today that I went to the cancer center to get my lump checked out.  Ultrasounds and biopsies occurred, as well as the worst part: the waiting for the news.  I think over this past year and think how awful it was, but also how beautiful it was. 

I know my last post was about how I've changed, but I continue to change and learn from this experience.  I've been seeing a therapist since October, and it's been nothing but helpful.  A little context: Since the first time I was diagnosed, I've been struggling with the fact that I pack so much into my life.  I take too much on.  I work full-time, am a mother, a wife, a daughter, a sister, a friend.  I try to maintain and be the best at those relationships, plus have this natural pull and desire to "save the world" when I see injustice and try to do what I feel I can.  Then add in just trying to have fun (zoo trips, concerts, festivals, etc) and all the menial tasks of life that have to be done (laundry, meal planning, cooking, driving to work).  All of it I like and enjoy (maybe not my commute and laundry), but it's too much.  And while I realize it's a problem, I can't seem to take any action to stop myself from doing.  It's like I'm on this roller coaster that won't stop going 100 MPH. 

I kept referring to this as an addiction to busy-ness.  My therapist said it's not an addiction because an addiction implies that I'm doing something bad, and that I'm not doing anything bad.  The things I do are good: I work hard, try to bring people together, and make change.  He said what he would call it is a dependence on busy-ness, and it's just not working for me.  We then talked about the fact that just because I slow down, it doesn't mean I have to stop.  There's running and walking, but in the middle is jogging, and that's where I need to live. 

But like any addiction or dependence, there's a root cause to it.  A few weeks ago in a session, I finally figured it out.  The reality is, I've had cancer twice, two years apart, at a young age.  In my head, I believe that I have a shorter life expectancy than most.  I don't see myself growing to the age of, say, 70.  I have no faith in percentages.  There was a less than 2% chance that I would get cancer again, and I did.  They mean nothing to me.  So while I take my pill every day for 5 years, (and then possibly another 5) who's to say something else won't happen.  I've had shooting pains in my left breast lately, and of course I wonder if it's back.  I've become a hypochondriac.  Anything off makes me wonder.  But my therapist said that just because I feel that I'm not going to live a long life, doesn't make it true.  We'll see.  But he said he does understand since I've stared death in the face, and I have a closer relationship with it than most my age. 

But even still, every day that thought enters my mind.  I only allow myself to be in that space for about 15 seconds a day.  I figure there is no point in my dwelling in that possibility/likelihood.  I have to make the most of my days.  But that 15 seconds every day fuels the rest of my seconds.  So I pack and pack more and more into my time, trying to do it all, for fear that I won't accomplish all that I want to in what I feel is going to be a shorter life. 

The problem is, I'm prioritizing quantity over quality.  I told my supervisor all of this, and she said something to me that has been sticking in my head the last few days.  She said, "Better doesn't mean more."  So I'm glad I've identified the problem, and the root of it.  Now I have to figure out how to correct it.  That's my next journey.

And while I will never forget my cancer journey and be forever changed, I decided to get some artwork done to make sure I never forget.  I got my first tattoo last month.  It's of two arrows, one for each time I've had cancer.  There's also four circles with the words, "Strength, Trust, Courage, and Hope" spelled in Morse Code.  I love it.

I'm also growing accustomed to my curly hair.  Apparently, 90% of the time after chemo, hair grows back curly.  Nobody seems to know why, but I suppose folks are spending more time trying to fight cancer versus figuring out why hair comes back curly.  I don't think it's grown that fast, but when I see others, they say it looks long.  I did also get my first haircut in over a year just to shape it up and make it look a little more intentional. 

While I try to figure out how to slow down and prioritize quality over quantity, I am also proud that I am able to help others who are in the midst of battle.  Julia's teacher has a friend who is finishing chemo and about to have a mastectomy.  I know it was tremendous help for me when I was in the midst of it. Every person's journey is different and personal, but if I can shed some light as to what to expect, I'm so happy I can do that for someone.

These next few days I am going to be especially more reflective, but I will say that I am definitely grateful for every single day that I am healthy.  I know what it's like to feel so low, and in pain in every part of my body, even down to my fingernails.  It sucks and I hated feeling incapable.  So on the days that I am healthy and capable, I am grateful.  I know that it's an extra day here on earth with my baby and Eric, my family, and my amazing, beautiful friends.  And that's all I can ask for. 

Changed

Well, it's been quite some time since my last post, and I recognize now there's a reason for that.  I completed my last radiation treatment on August 18.  I choked back tears as I rang the bell with Julia, and I was so happy that we got to do that one together.

 

The next day was perfection.  My parents, Eric, Julia, and I went to Indiana for a Shine Festival.  It was gorgeous weather, and we got to set out our little picnic area, listened to music, and Julia got to jump in a bounce house while we waited for it to get dark.  We each got a biodegradable lantern and wrote any wishes on them. Then, it was time to launch them into the sky.  It was pure magic, and it was nice to do something physical and symbolic to release everything. I would do it again in a heartbeat.

 

Now for the reason I haven't blogged in a while: I think in my head I was just done and over it all, and I wanted to run away from it as fast as possible.  Now, I know deep down that wasn't going to work long-term, but after that marathon that started in February, I was just over it all and wanted to get back to "normal."

 

A few weeks later, I had a meeting with my nurse navigator.  She gave me a book on survivorship and a packet of all my medical history: When I was diagnosed, type of cancer, dates of surgeries, dates of chemo, type of chemo, start and end of radiation, and medications.  It's a thick packet.  She also went over the long-term side effects of all the treatment.  The thing that stuck with me the most though, was what she said about my emotional state and personality.  She said to me, "Now, everyone is going to think that now that you're done with treatment you're going to go back to normal.  But that's not the case.  This has changed you, and even you don't know how you're changed, so it's difficult to communicate that to people, and you're going to be frustrated because you're still figuring that out."

 

Amen to that x1000. 

 

Now that it's been a few months though, I am able to reflect and see some ways I've changed.

 

1. I Trust More - This is a big one.  I think it's really easy for those of us who are believers in Christ to say that we trust in God, but once you're faced with something like fighting for your life, you really have to.  And you don't have a choice.  For someone who is admittedly a recovering control freak, this was the hardest and most valuable lesson for me.  It feels so good to know that God has my back.

 

2. I Worry Less - This is a direct result of number one.  I've even seen evidence of this in my work.  Because I trust more, I've learned to not worry about things as much (or sometimes at all) any more.  I simply don't allow it.  I wonder where it will really get me and how much further it will get me.  The answer is always nowhere and not any farther at all.  In fact, recently I had a stressful task that always comes around certain times of the year at work.  I knew there was nothing I could do about the situation until a certain day, so I didn't think or worry about it until I could actually work on it.  It turns out, everything turned out great.  I then thought, "What if I had worried all week about this?  I would have stressed out, wasted productivity on worrying, and it would have been for nothing."  It's just not worth it.

 

3. I Seek Out Help - I was so overwhelmed with support this year (and two years ago) and it has helped me to not only receive help, but be ok with asking for help.  Pride can be something that stands in our way a lot.  But people have good hearts and want to help, so why not let them?  Also, I've recently started seeing a therapist to work through some individual life issues I'm dealing with, and it has been tremendous.  I look forward to each session and it is helping me build more self-awareness and work through the obstacles I currently have. 

 

4. I'm a Hypochondriac - Any twinge, pain, jab, anything.  I wonder, "Could it be back?"  But then that brings me to my worry stage and I stop myself there, and I don't allow it to go any further.  It's not that I put anything on the backburner, it's just that I allow time to play out and see if any patterns develop.  If they don't, I'm most likely fine, so I move on.  However, I do think every day how lucky I am.  The other day I was driving and thought to myself, "It is so great to feel healthy."  I think especially at my young age, we're not used to thinking our bodies could fall apart or that our lives could end.  We think we're invincible, and typically the older you get the gradually your body deteriorates.  That didn't happen for me.  I got a slap in the face and a reality check.  But I'm thankful for it, because now I know what I have, and I'm so grateful that I have it. 

 

5. I Think About Health Differently - Like most women, I used to worry about how I looked, if I was thin enough, and if I'd feel good in a swimsuit in the summer.  None of that matters any more.  That's not my goal.  When your body has been brought down, and every piece of your body down to your fingernails is negatively affected, you think about health differently.  I no longer want to be thin--I want to be strong.  I've started out slow (at the suggestion of my nurse navigator) by doing yoga via YouTube each evening.  Then I thought, "I need a goal, or I won't stick to this."  So what did I do?  I signed up for a (half) Tough Mudder: 5 miles of running plus 13 obstacles that include climbing, swimming, crawling, etc. in mud and water.  It's not until the end of August, so I feel like that's enough time to get in shape for it, but I needed that goal ahead of me so that I can work towards something.  I'm nervous beyond belief (I NEVER run), but I'm also really excited about this challenge I've set for myself.  The best part is I've got at least 6 other friends (who happen to be co-workers) to do it with me and be a team.  I'm super pumped.

 

These women (from Wonder Woman of course) are my new body role models.  Look at how strong and beastly they look!  I love it!

I'm still in the process of figuring things out, but now that I'm a few months removed, it's been good to reflect and see how I've morphed.  Maybe as my hair grows, my self-awareness will grow as well.