So, Freddy Krueger And I Walk Into A Bar…

7-beautiful-women-who-have-faced-freddy-krueger-331432

It’s officially a week and a half since my 12-hour brain surgery/plastic surgery/infectious disease surgery/whatever it is that just happened to me.

I know that there will be several (okay A LOT) of posts that will cover what has happened over the last few weeks, but in a simple, non-medically trained nutshell… all of my radiation treatments caused my brain cells to die, which then caused the skin cells around my surgical/radiation area to breakdown, causing a serious infection that led to my titanium plate being exposed.  Enter an infectious disease team, a plastic surgery team and my established neurosurgery team…

I was advised that the infection would obviously have to be surgically cleared out, that my plate may or may not have to be removed, and that a portion of my stomach would have to be taken to create a new skin flap to cover the area.  Little did I know that I would wake up with my stomach now making up just about half of my head, as well as a giant incision starting from the top of my chest down my abdomen.  Oh, and my bellybutton is also now about 6 inches off from where it was just a few weeks ago.

So, I feel like Freddy Krueger and I walked into a bar and well, whatever happened, he clearly won.

I am thankful beyond words that I am alive, that I am recovering remarkably well and that I am even able to write this post, but… this time, the vanity thing is tough.

I feel like a monster.  While I know rationally, it will get better – the swelling will reduce, the bruising will fade, etc. – it’s just really, really hard this go around.

With my first surgery, you wouldn’t have known I’d even had surgery.  My hair only began to fall out a few months later due to radiation.  I thought that was hard.  However, I got a fantastic hairpiece (clip-on, not even a full wig) and absolutely no one could tell I had a bald patch hiding underneath.

Time went by and my hair started to grow back enough that I didn’t even need the hairpiece.  I only needed to style my hair the right way and all was okay.  I even left the hairpiece hidden in a drawer to get knotted and matted, thinking I really wouldn’t need it again.  How naive!

So, along came the second surgery and more hair had to be shaved down, but honestly, it wasn’t too bad.  I wasn’t going to cry over it.  Yet, once again, radiation came around.  I was actually away on my First Descents trip when my hair began falling out in huge clumps.  I stood in the bathroom at our camp site just crying while running my fingers through my hair as it immediately fell out.  Thankfully, being on a trip with cancer survivors, they all understood my hysterics.  Due to the high-dose radiation, this time my scalp looked red and severely burned (“angry” as one person perfectly described it).  It looked worse than before, but by the time it was all said and done, I wiped the dust off the hairpiece and adjusted to it all.  I also continued to rock what I like to call “the crazy bun.”  It was disappointing, sure, but manageable.

But now…since ya know, my scalp is significantly made up of my stomach, the hair will never ever grow back and it’s definitely not just a bald spot either.  (As a darkly humourous aside, my scalp now has freckles that were formerly members of my abs).  Sure, they say the swelling will go down too.  However, it’s really hard to imagine my head ever looking semi-normal or symmetrical.  There are sutures everywhere and because the plastic’s team had to connect artieries behind my ear, there is yet another incision there.

I’ve been dealing with the whole bald spot/scalp/hair issue for 2 years now.  I get it.  I had brain cancer.  I can’t expect that my head would look compleletly untouched.  However, I was not prepared for the additional disaster area of my chest/abdomen.  Again, I had brain cancer.  This wasn’t supposed to involve abdominal surgery with permanent scarring down the front of my body.  That wasn’t in the manual!

My stomach is also so swollen that I look about 10-months pregnant.  I am a very petite person.  It’s not a cute look.  In being such an intensly active person, my core was always so strong.  Now, I can’t stand up straight because of the sutures and the swelling.  I hobble around like an 80-year-old woman.

I hate that my poor husband has to look at me this way.  He is beyond amazing and justifyably tells me I’m being crazy.  He is not afraid to look at me, but I am.

I feel petty even complaining about these things.  Big picture – I’m alive!  So, so many brain cancer patients are not as fortunate.  Also, I’m sitting in my own home, on my couch, next to my incredible husband and my adorable pup.  I am not in the hospital.  I am not in a rehab facility trying to fight serious neurologic side effects.

I still do have everything.  I just wish I had never walked into that bar with Freddy a few weeks ago.  I should’ve just stayed the hell home.

 

 

 

Helpful Resources and Information I Wish I Had When First Diagnosed

I intend to update this post constantly, as I am always coming across new and helpful resources.  I believe they can be utilized regardless of whether you are newly diagnosed, or a long-time member of the cancer club. 

This is in no way an exhaustive list, but these are some valuable websites and organizations I personally connected to.  I also don’t claim to be any type of expert!  You have to do what is right for you.  So, I have included some of my personal advice based on my experiences and those I’ve met along the way.  

One invaluable piece of advice I have heard over and over again, as well as advice I’ve given:  DO NOT GOOGLE!  Don’t get me wrong – it’s hard not to in our digital age.   Try your best to avoid the overwhelming urge to search out your symptoms, diagnosis, etc. on chats or less-than-established websites.  I have heard horror stories of patients googling one symptom, or one treatment option, and becoming convinced they will die in the matter of months.  I’ve also heard countless patients tell me that they entered an online chat on some random site only to feel helpless and more frightened about their diagnosis and/or prognosis.

On the flip side of that though, I have met a number of people, who did their own research on their disease and found cutting-edge treatment options.  That led to numerous conversations with their doctors and in some cases, changing doctors/hospitals after weighing all the options.  Again, do what is right for you.    

Overall though, I’d recommend focusing on sites such as:  American Cancer Society (cancer.org); National Cancer Institute (cancer.gov); Association of Cancer Online Resources (acor.org); and, the Mayo Clinic (MayoClinic.com).  They are the experts – not us.

For brain cancer-related sites, I rely on the National Brain Tumor Society (braintumor.org).  Disclaimer: I am heavily involved in NBTS, so I am admittedly biased.  Some other brain tumor organizations people have found helpful are:  American Brain Tumor Association (abta.org/) and Voices Against Brain Cancer (voicesagainstbraincancer.org/). 

I also found my hospital’s website, as well as their social workers, key resources.  Again, I am extremely biased towards my hospital (I wouldn’t go anywhere else), so I won’t include their specific link.  Although, despite how incredible my doctors and hospital are, I found that I had to be the one to reach out for these resources.  So, be proactive.  Seek out social workers.  Ask them for information and helpful sites, organizations, publications…  Be your own advocate.  It’s incredibly challenging, especially early on in your diagnosis.  Don’t you have enough to worry about?  I strongly believe it benefits in the end though.

I have mixed feelings about support groups.  They work for some people.  They don’t work for others.  My advice: Ask questions.  Find out as many details as you can about the group(s).  Weigh the options.  Are you open, or ready, to seek support from other patients/survivors?  For me, I was frightened to hear other people’s stories.  What if it made me feel even worse about this whole roller coaster, and more specifically, scare the hell out of me?  Would there be people there at the end of their battle, truly facing the worst, i.e. dying?  In the end though, the support group I joined helped me feel less crazy (Like, wow, other people have these crazy thoughts too?) and I connected with some really incredible people.  Specifically, I joined a group through Cancer Care (cancercare.org), and found them to be a good fit for me personally. 

If you are a writer, or just someone who expresses themselves better through writing (I am definitely one of those people), Cancer Care provides a fantastic program, Healing With Words.  They describe it as “an online therapeutic writing group… The group will be a space to respond to writing prompts, share work, and participate in discussion surrounding the writing process itself.”  I absolutely loved participating in this group and many of the articles and pieces I included under this category were provided by the social worker moderator.

Additionally, one particular organization I cannot say enough amazing things about is First Descents (firstdescents.org/).  I really don’t even know how to put into words what First Descents gave to me.  So, I’ll let their site best summarize what they do, in the technical sense.

“First Descents offers young adult cancer fighters and survivors a free outdoor adventure experience designed to empower them to climb, paddle and surf beyond their diagnosis, defy their cancer, reclaim their lives and connect with others doing the same….Each program is limited to 15 participants, ensuring individualized care, medical attention and an intimate experience with fellow survivors. First Descents programs are available to young adults with cancer regardless of their financial means. All meals, accommodations and program activities are provided free of charge, including travel scholarships, when needed.”

“At First Descents, we define our lives by the depth of our friendships, the adventures we live, and the moments of laughter, peace, fear, and humility we experience. We remember the important things; the defining things, like brilliant sunsets, big rapids, glassy waves, and endless rock faces. We’re fueled by the feeling of standing up on a surfboard for the first time, paddling through whitewater, and topping out on a climb, always surrounded by friends who feel more like family. These are the moments that define First Descents and the paradigms our programs seek.”      

Through First Descents, I spent one week with 9 other cancer survivors kayaking through the whitewater rapids of Oregon’s Rouge River.  These 9 people are now my FD family, and I don’t say that lightly.  I do not know where I would be without them, and without my FD experience.  The program challenged me physically, emotionally and mentally.  I absolutely came out of that week a better and stronger person. 

As a side note, I almost did not make my trip.  I was scheduled for my program in mid-August.  I learned of my recurrence in June, and underwent my 2nd brain surgery on June 30th.  I then began IV Avastin infusions and one week of intense, high-dose radiation.  Through every single step of the process, I feared I would have to cancel my trip.  However, through my oncologist’s tireless fight, all of my treatment was scheduled around my FD program, and I was thankfully approved to participate.  My FD experience was truly life-changing, and I will forever love my doctors for giving me that gift. 

On another side note, I will probably dedicate a number of posts to FD and what I gained from my experience. 

Basically, if you have the opportunity, apply for an FD program, like now!!!