In my prior post “Vacation Period?” Seriously…, I described the traumatic period between my last radiation treatment and my follow-up MRI. Well, the day of reckoning had come – the MRI results were in. ALL CLEAR! No sign of cancer!
Without a doubt, I was indescribably relieved. I cried tears of overwhelming joy. That metaphorical tons of bricks weighing on my shoulders immediately lifted. It was almost surreal.
Once my oncologist sat down with me celebrating the incredible news, we got to another topic… the emotional turmoil of those weeks leading up the MRI. She knew full-well what I had been going through, thanks to multiple calls to her office. Even with the clear MRI, she knew I needed help to process all of this. So, she recommended several things, including seeing a therapist, as well as a psychiatrist for an evaluation to determine if I
needed medication to ease the anxiety that had overcome me during that period of time.
I had never been in therapy. I was of the strong opinion that here in the U.S., we were over-medicating ourselves with antidepressants and drugs of all sorts. I’ll be honest – I was against it all. However, she felt that it was almost a “prescription” to seek out professional help within the hospital’s incredible counseling center. So, because I literally trusted her and all of my doctors with my life, with much hesitation, I agreed.
Additionally, she suggested reaching out to the hospital’s social worker, who specifically dealt with neurology patients and particularly brain cancer patients. I had an easier time agreeing to that idea. It seemed a lot less clinical. As it turns out, the social worker pointed me to some really great cancer organizations, particularly First Descents (http://firstdescents.org/).
During the dark period, it also hadn’t helped that I had been on a seizure medication known to have terrible side effects regarding anxiety/depression in some patients. So, with the clear MRI, my seizure doctor was comfortable taking me off that medication and replacing it with another drug. Changing that medication made a world of difference for my mental state.
Going back to the time period between my surgery and throughout my radiation period (approximately 6 months after my inital diagosis), I had actually been extremely positive and strong. I had become heavily involved in the National Brain Tumor Society (www.braintumor.org). I had also just signed-up for a post-treatment support group through CancerCare (http://www.cancercare.org/). So, I will say I was fortunate that the dark period only truly lasted those several weeks before the MRI. Now, with the news the MRI was clear, boy, did my whole outlook change! I went back, almost immediately, to that fighter/survivor, who people had truly been amazed by. People had called me an “inspiration” (discussed in my post https://braincancerbabe.com/2016/04/19/being-an-inspiration/) and yeah, I felt that way again.
While yes, life did normalize, it was indeed my “new normal.” I felt comfortable with the fact that cancer had changed my whole world, but it wasn’t all for the worse. I truly embraced a new perspective on life, namely, “Live every minute of every day like it’s your last! Appreciate everything you have!”
I saw how lucky I was to have come out of all of this with very, very few side effects. I was doing pretty much everything I had been doing before cancer entered my world. I mean, seriously – I had had brain cancer and brain surgery! Yet, here I was, pretty much the same girl I had been. I truly recognized what an amazing support system I had. The kindness, concern and love from even strangers overwhelmed me. Man, was I loved!
I continued to be monitored very closely by my neurology team. At every visit, they were beyond thrilled that the dark days were behind me (which I now see as a very brief period of time in the grand scheme of things). They loved seeing that girl they had first met, who showed what a fighter she was and how she continued to embrace life so much.
I was kickin’ ass.
However, things did change in early 2015. So, that will lead to my next post and specifically, Round 2 of the cancer chaos.
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.