The Alternative Anniversary

My mother-in-law thinks that we should be celebrating my one year anniversary today since it’s been one year since my tumor was removed (instead of discovered). Who am I to argue with that?! Any excuse for a party.

I said most of what I wanted to say about surviving a year after diagnosis in my last post, so to commemorate this alternative anniversary, I’ll focus on some of the highlights of the week I spent at Stanford after learning about the ‘beast’ and my experience (though perhaps vague) with brain surgery. It’s interesting what I remember when I look back a year later. The people who cared for me stand out the most – probably because they helped me feel strong, safe, and reassured that I was going to be fine. It never occurred to me during that week that I wasn’t going to be fine, that something could have gone terribly wrong, that I could have died. But maybe it was just the drugs they pumped into me during my stay…who knows.

Coincidentally, today is Brain Tumor Thursday (as is every Thursday.) The social media community of brain tumor survivors, caregivers, and loved ones post information about brain tumors (benign or malignant), research, treatment, facts and personal experiences. We’re trying to educate and raise awareness while offering support for each other. It’s an uphill battle, though – we don’t yet have major sponsorship or color campaigns even though brain tumors can often be more deadly and devastating to those who have them than other kinds of tumors/cancer (I’m not belittling the need for awareness and funding for other types of cancer, just observing the disparity in research, funding and awareness.)  #BrainTumorThursday, #btsm

One year ago TODAY, I had a craniotomy. In a million years, I’d never have imagined that someone would drill holes in and take a saw to my skull to be able to remove a clump of unwelcome cells from my brain (~4 cm worth of cells, to be moderately precise.)

While the days between Oct. 7 and Oct. 10 of 2012 are a little foggy – thanks to postictal haze, drugs, and that unwelcome mass pushing from my left frontal lobe into my right frontal lobe, here’s what I remember…

Hospital food – as a vegan, options are limited and are usually Indian oriented. I say ‘oriented’ because they claim this food was Indian, but it barely resembled the delicious food my Indian friends cook. This is where my weight loss began and even if I LOVED being in the hospital otherwise, the food would have motivated me to do what I needed to be released.

Nurse rotation – we had some amazing nurses taking care of us. I must have had my vital signs taken a thousand times during my stay at Stanford that week. Not to mention the blood draws, the MRIs, the CAT scans…and probably a few other things I don’t remember. But the nurses were amazing – all of them, even though they had to wake me up every couple of hours to make sure I was still breathing, didn’t have a fever, and that my blood pressure was still normally low. They also gave me some lovely drugs, so there was that bonus.

TV and Movies – during the down time while we waited for surgery, we watched a lot of TV and movies. As an example of my mental fog, I remember starting to watch Rango, but I don’t remember actually watching it (though my husband tells me I was awake and alert). This is in no way a review of the movie, I promise.

IV lines – I had at least a dozen over that week for various reasons and they left bruises. The worst, however, was the arterial line placed just before my surgery by a resident anesthesiologist.  It took a few attempts, hurt like a bitch, and left a bruise that lasted for weeks. They said my face would bruise badly, surprisingly it didn’t…but that arterial line bruise more than made up for it.

Blood – If you aren’t aware, your scalp will bleed profusely when cut. I had a 6 inch incision – from above my left ear to the top of my head – and my face was pulled back from my skull during surgery. Gross, but true. Well, turns out that bleeds a LOT. I came out of surgery with ~35 stitches and hair crusty with blood. I looked like a macabre medusa. I don’t think anyone took a picture…sorry. I don’t think anyone wanted to remember. One of those awesome nurses I mentioned helped to wash that blood out of my hair BEFORE my kids came to see me after I left the ICU. I am forever grateful to her for helping to spare my children from that image of their mom. Aside from my blood covered head, to give you an idea of the quantity of blood ‘donated’ during surgery, I was swabbing it out of my left ear for weeks after surgery.

Doctors, specialists, residents, medical students – Stanford is a teaching hospital, which means I was a learning opportunity. Rounds – morning, noon and evening – included a gaggle of people. You get used to repeating yourself and losing all sense of privacy – lying in a hospital bed in front of 5-10 people asking questions, looking at me as though I weren’t really there. One of the residents who DID notice I was there and was incredibly kind was responsible for shaving little spots on my head to attach lifesaver like stickers that would help in the MRI guided surgery. He did way more, I’m sure, but that’s what I remember him doing…coming in with a razor and ushering in my year of weird hair.

Lifesaver face

The Operating Room – Again – amazing nurses. The OR was FREEZING. Even with a sedative, the panic started to set in once I was wheeled into the OR. The nurse got me 2-3 more warm blankets (one benefit of hospitals is they keep blankets in a warmer) and sat close, holding my hand and talking in a calm, reassuring voice until I was sleeping, oblivious to the drills, saws and scalpels. Unlike so many neurosurgery patients, I didn’t need to be awake for surgery (thank goodness.) 4ish hours later it was over and I was taken to the ICU to recover.

ICU – Coming to out of anesthesia can be an unpleasant experience if you’ve never done it. This time, however, wasn’t so bad – probably because I was happily drugged up for the pain. I remember opening my eyes, and seeing a nurse at another patient’s bed – she smiled at me and gave me a little wave. That was it. That smile and wave will forever be etched in my brain – I was alive and well. If I wasn’t, she would have been in my face and certainly not smiling. She also bent the rules a little to allow my husband to stay with me and let me sleep for longer periods of time.

The next morning I was moved back to a regular room – I lucked out with private rooms my whole staycation at Stanford, which meant I had some level of privacy and quiet, allowing me to sleep better and recover faster. There were more tests, more doctors, residents, students and nurses. There was more bad hospital food, flowers from loved ones, short visits from family and close friends, and slow walks around the ward in my desperate attempt to prove I was well enough to get the hell out of there – which I did on Oct. 12.

But before we left, we were told that I had a stage 4 Glioblastoma Multiforme of the giant cell variety. The neurosurgeon said he felt confident he got it all, but there were no guarantees because it was not encapsulated. I would require radiation and chemotherapy and we met my Neuro-oncologist for the first time. We officially entered the world of brain cancer – but didn’t fully get just how serious it was until our post-surgery appointment with the neurosurgeon when he told me this tumor would likely come back and would kill me – it was just a matter of when. Well, I’m not dead yet and I’m still fighting like mad.

Given all that could have gone wrong that week and after, I really was very lucky. I had no post-operative complications or infections. I didn’t have any reactions to medication (until later). I didn’t have any major physical disabilities occur because of the tumor or surgery. Most importantly, I had a strong advocate by my side at all times and an incredible team of nurses and doctors taking care of me.

That tumor has yet to return and with any luck, I won’t have to repeat this experience ever again.

I think my mother-in-law is right – this alternative anniversary is also a day worth celebrating.

5 thoughts on “The Alternative Anniversary

  1. I love reading your posts. Not because of what your going through (because it royally sucks for you and everyone else involved) but as a reminder of what my family could be dealing with. You are so strong and I appreciate the candidness in your writing. It helps me be a better person and a better mom. Our 8 yr old was diagnosed with a brain tumor this last April after having undiagnosed seizures for over a year (this is a very long story which I won’t bore you with.) That was the scariest day of a long string of scary days… We lived in Japan at the time so we packed up our lives and moved back to the states in a week. He had surgery to remove the tumor in July and has thankfully been seizure free since. However, every time he says “Mommy” a certain way, I get scared that they are coming back. He is scared that they will come back. He recovered really well on the outside so I think people forget exactly how hard this has all been on him and that he is still recovering on the inside. His tumor turned out to be malignant, however, he is having his 3 month MRI in a few weeks and it’s hard not to think about the what ifs

    How can I find out more about brain tumor Thursday? Is there a website or something?

    You are a trooper! I will keep my fingers and toes crossed on all fronts for you and your family! Kristin

    • Brain Tumor Thursday is a Twitter thing, so if you’re on Twitter you can do a search on #braintumorthursday or #btsm and start to get connected with some folks who are in similar situations. http://www.braintumor.org will also have some good resources for you and your family about childhood brain tumors and the long term psychological effects.

      I get the same response from my family and friends…if I stop halfway through saying something or look off into space for too long, I get the ‘Are you ok?’. My kids panic just a little when they hear a siren and now have an aversion to snow cones and our favorite pumpkin patch. When we have no outwardly visible signs of illness, it’s hard for people to understand the trauma we’ve been through. I’m an adult and cognitively understand it, but a child going through it can suffer so much more.

      MRI anxiety is common and it sucks. I have another myself in a few weeks. I hope you get good news. (and don’t be afraid to ask your doctor for some anti-anxiety meds if you find yourself struggling with it. Taking care of yourself makes it much easier to take care of your son.)

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