Sucker Punch: Not the Movie

It has been a few months since I posted to this blog, mostly because there has been nothing significant to report. My medical condition remains status quo, which is a good thing. I continue the slow, steady crawl back to relative normalcy--as normal as living with a brain tumor and a shunt running through the left side of my body while looking perfectly fine on the outside can be. That sounds whiny, so no more of that.

After surviving the longest, coldest, darkest winter in history along with everyone else in New England, spring has finally arrived. Trees are blooming, flowers are budding, grass is growing, and pollen is covering everything with a thick yellow dust. Like just about everyone else, this is the time of year when my sinuses act up. That little nag in the back of my head worries about each twinge and twitch and throb on the left side of my body from the chest up to the top of my crown. Compared to last year, the spring of 2015 is a walk in the park. But I never want to forget how bad it was last year. I never again want to explain my symptoms away as being caused by pollen. Sounds ridiculous, doesn't it? Confusing a brain tumor with sinus pain? Fool me once, as they say. So now I keep a little health journal on my calendar to note any head related symptoms and when they go away, just to be sure. I would recommend this practice to anyone with an ongoing medical condition.

I continue to be amazed by the transitions a human body can undergo and still remain vital. Whether it's due to my meditation practice, the trauma from last year, or simply growing older, I have become more aware of the emotional component to my condition and to my life in general. Anyone who knows me is has no doubt that I prefer to create drama on the page rather than live it. Emotions are kept contained under a pretty solid poker face, except for the "Mom look" my children know quite well. It doesn't mean I don't feel things, I simply choose not to express them outwardly. It's much simpler that way. 

Here's the part where the title of this post is explained (and no, it's not the 2011 movie, but here's a picture anyway)

I was performing the mundane task of paying the household bills, starting as usual by cleaning out the May folder, sorting through the year-old bills, statements and receipts, when I came upon the order form for Ben's high school graduation portrait. Everything stopped and I was sucker punched back into the trauma of last year. The headaches, the vomiting, the blinding auras, the hospital. Missing my oldest child's graduation. Ruining what should have been a happy occasion. The embarrassment I felt for overlooking what now seem to be obvious symptoms. All of these compounded and swirled around inside the old cocoon of guilt. I sat at my desk, tears streaming from my eyes as it all came rushing back.

Mothers feel guilty all the time for everything it seems, even for things completely out of their control. Later, I related the "sucker punch" experience to Margaret and told her how I was looking forward to her high school graduation next year. The underlying sentiment, though unspoken, was that I felt guilty for being excited when I had ruined Ben's graduation day. I have a strange feeling that Margaret's graduation day will really be Ben's too--for me and the rest of the family--and that doesn't seem fair. But that's how it goes.

I would be lying if I said I wasn't nervous about hearing the first notes of the graduation march next year. That's when it all went down, after all. Graduation march and green caps and gowns. How emotional will I be? Will I be sobbing uncontrollably like I was last year, or was that because of the tumor? At least I have a year to prepare. And now that I know it can happen when I least expect it, I will be on the lookout for possible triggers. I don't want to be caught off guard again.

So here's to the sucker punch! Be it a song, a memory, a word, or a stupid receipt from a year ago. I think I'll clean out the June 2014 file now.

Snark and Paranoia in the ICU

It's been five weeks and a day since my brain surgery. I have a post-op checkup with my neurologist tomorrow and on Friday an MRI immediately followed up by a visit to my neurosurgeon. Hopefully, they will give me the all clear so I can keep my skydiving appointment (kidding Mom!). 

Progress

Every post should have a point, a theme, a main idea. Besides the health update, I will share my experience in the St. Vincent's ICU:

This was my second stay in this particular ICU, but it seemed much nicer this time. It was quieter, brighter, more organized than what I remember from my first visit. The nurses were extremely nice, attentive, and competent--a smidge more than during my last stay four years ago. If I could remember names, which I am horrible at, even under normal circumstances, I would thank them individually. However, I will just have to say Thank You ICU Nurses! 

Before surgery

Before my surgery, my neurosurgeon visited my room to inform me of the situation and what he would do to fix it. I must have been under the influence of some medications because I remember saying something snarky like "Can't you just zap it with your fancy cyber-knife thingy?" (I am often snarky with family and close friends, but never with acquaintances--especially not someone who is about to cut into my brain.) I remember the smirk on his face. 

Once I resigned myself to the surgery, I told him to shave off all my hair, unlike last time when (at my request) he tried to give me bangs. Another smirk.

I remember a little bit of pre-op, when a Burgess parent who works there recognized me and said hello. Then it's all a blank. I don't recall the post-op MRI, the first time Joe saw me, waking up, nothing. I can't tell you my first memory, because I don't remember the order of things. Here are 5 things I do remember:

#wonderfulhusband

1. Joe stayed with me every night in a very uncomfortable recliner and barely ate or slept. And he still looked gorgeous (see above)
2. At one point, I had an arterial line and three IVs...and my veins suck. Joe says 4 attempts were made to place an IV at one point. I'm glad I wasn't awake.
3. I had a major case of paranoia that seemed very real. I thought the nurses were conspiring against me. I heard conversations about me, saw them walk past my room to spy on me. I thought they were blocking the door so Joe couldn't come in. None of which occurred. I was in a panic, texting Joe, begging him to hurry up and save me. I was suspicious of my nurses and cold toward them for a long time, even after Joe told me I was hallucinating. I blame the meds, but it was so real. I mention this because it seems funny now, and a little embarrassing, but if it happens to anyone else, they won't think it's abnormal.
4. I think at one point, the room next to mine was occupied by   someone who defecated all over the place and then spread the love. I heard the nurses chastise the patient (in a nice way--like a parent to a child) as they cleaned up. Sometimes I question the reality of this event, but I do recall my nurse entering my room with different clothes on. Some nurses are superheroes.
5. Unlike the first time, I had no gurgling/swirling sensation in my head the first time I sat up. I didn't feel claustrophobic and have a mental breakdown due to the wrap on my head. There was no tube from my brain to a pressure bag on an IV rack to worry about. The food was slightly better.

"Real" food

I remember a few more things, but this post is long enough and readers like short, numbered lists. And I need a snack.

The Big Reveal

Fingers crossed for my appointments in the next few days. I will post an update after it all goes down. Until next week...

Brain Tumor Part Deux: The Backstory Story

Today marks three weeks since my second brain surgery. I didn't think I'd have to revisit this blog for such a reason, but here I am. I'm a little less bald than when I came home from the hospital, and a lot less brain tumor-y than before the surgery. Everyone around me has been amazing, especially my husband, throughout this whole experience. I would especially like to thank him, my Mom, my Mother-in-Law, my Sister, and my three great teen-age kids for their help and patience so far. 

Brain tumors are scary things, especially when they cause unexpected seizures at the most inappropriate times--like your oldest son's high school graduation. Looking back, I should have paid attention to the signs that presented themselves quite clearly. However, I wasn't the only one in denial about my tumor. 

The following is a retelling of the events that led up to my most recent surgery. It is meant as a cautionary tale for those who may have the same type of tumor as me. It is also meant as a sort of PSA for everyone to pay attention to symptoms and don't dismiss or deny chronic headaches.

I'd been having increasingly bad headaches since last summer. The first indication that the tumor had regrown was that I could no longer lay on my belly in bed to read (my favorite reading position) without my head throbbing. All the literature I had read said that the type of tumor I have, called SEGA, was super slow growing. My team of caregivers, including my surgeon and the specialists at the Herscot Center for TSC, all assumed that since I was born with the tumor, and it took 40 years to cause a problem, that I would die of old age before it was large enough to cause problems again. Wrong.

I underwent yearly MRI's and my neurosurgeon compared each image to the one previous. The tumor showed no remarkable growth. I asked about the headaches I'd been having and was reassured that the tumor was not the cause. Again, no change in size according to the radiologist and the surgeon. 

I contacted my PC and we looked for other causes--tension, stress, allergies, sinuses--and settled on sinusitis. I have had trouble with my sinuses my entire life, so this was a believable diagnosis. My PC prescribed a steroidal nasal spray to shrink the tissues and it seemed to help a little. Two months later (May), I was back in her office because my symptoms had worsened: neck and shoulder tension, throbbing head, visual auras, and nausea. I've had migraines before too, so again, I attributed these problems to tension and migraines. She prescribed a muscle relaxant for the tension. I took the medication as needed, but the problem didn't completely disappear. 

I should say that back around Thanksgiving, I had decided to quit my job as Library Assistant at the local elementary school. I had just begun my third year and I was exhausted all the time. I attributed it to the demands of balancing a full time job with three teenagers, a husband who traveled a lot for his job, my frustration with not having time (or energy) to do the things I enjoyed. I wanted to write, garden, keep my house clean, and most importantly, be a better wife and mother. 

In order to be fair to my supervisor and my coworkers, I knew I had to finish out the year. I was determined to fulfill my commitment to the school, but my heart wasn't in it. For six months, I struggled with the anxiety and stress of wishing I could just be done with my job and the guilt for feeling that way. Stress, anxiety, tension--of course I blamed these for my headaches too. If I could just make it to the end of the school year, then I could relax and all my problems would go away, right?

I almost made it. On June 1, the day of my son's high school graduation, I had a headache with auras, and nausea. I tried to power through. My parents and in-laws had come down for the event and I was determined to make it a good day for everyone. On the way into the high school, I vomited in the grass. I should have known then. 

Once we got inside, we sat toward the back in case I needed to go to the bathroom. I remember zoning out a bit as we waited for the ceremony to begin. Then I began to sob uncontrollably. I never cry. The last thing I remember is seeing the graduates lined up, ready to march in.

Apparently, I vomited again and they ushered me out to the hallway. I had a seizure. I never have had a seizure before. Someone called 911 and I was brought to Harrington ER, where I had another seizure. I was transferred to UMass Medical, and then to St. Vincent's (where I had my first surgery). I remember bits and pieces of these events, like the trees passing by during my ambulance ride. My family has filled in some of the gaps for me, but I know I'll never remember it all.

 I really wish I could have seen my son graduate. That may be the saddest part of it all for me. I'm grateful to my parents and in-laws for taking care of my children during this time. They knew just what to do, how to handle the situation, and what to say to the kids. Luckily, none of my kids saw me have a seizure and I hope they never do. My husband has been traumatized forever by witnessing his wife seizing.

So now, three weeks later, I can say I'm half way on the road to the 6 week recovery period. It really takes longer than that, but 6 weeks is a benchmark used by most surgeons. In the coming weeks, I plan to increase my endurance so that I can rock this totally badass hair the Nine Inch Nails concert on July 29. Fourth row tickets will not be given away! 

Herscot Center for TSC

Preop and Post-op

The week before my surgery, I was scheduled for pre-op bloodwork and a physical. The nurses ushered me in rather quickly, weighed me and took my vitals. (I was happy to discover that I had met my months long goal of losing 15 lbs, something of a bright side.) Then I was hooked up to an EKG for a few minutes, all checked out normal. They drew my blood, tested me for MRSA by swabbing the inside of my nose and cheeks (something surprising, but for which I was grateful they were taking such precautions), and told me if I tested positive for MRSA, my PCP would prescribe an antibiotic before surgery. Lastly, the RN came in and began to describe the entire procedure, leaving nothing to the imagination. I wanted all the details I could get. The surgery had yet to be given a time of day, but the hospital would call the night before to tell me when to report in. She told me the surgeon had given the procedure a 4-6hr time frame, but that he was meticulous and took all the time he needed. I would have an intraventricular drain, and a turban-like head dressing, and I would spend at least one night in the ICU before moving on to the Step-Down rooms. She detailed where I was to report before surgery, and all of the interviews and repetitive questions I would be asked, what to expect right before I went into the operating room. Then she introduced me to an anesthesiologist who went over my medical history, commenting how healthy I was, besides the brain tumor. After leaving the hospital, I felt very well informed, grateful to the thorough explainations of the nurses. Much of what they said turned out to be quite accurate.

The next day, I had a brief and less comprehensive visit with the surgeon. He went over some of the same details the nurses had the day before. He then showed me where the scalp incision would be--just behind the hairline from ear to ear--which surprised me. I didn't think it would be that big! This led into a discussion about haircuts, which seemed so absurd, given the gravity of the situation. Then I asked stitches or staples, as if it mattered. My fate was sealed for sometime on Tuesday, November 2.

On Friday, October 29, I received a confirmation phone call about an MRI that I was scheduled for before the surgery. No one had told me about this, so I was a bit confused. When I called the hospital, they explained that the MRI was scheduled for 8am on Tuesday and it's purpose was for brain mapping. This was news to me. But at least I knew I had to be at the hospital on surgery day sometime before 8am.

The surgery was scheduled for 10:20am. We arrived at the admissions desk at 6am sharp, with plenty of time to wait. They brought me into a waiting room, where we spent the next couple of hours waiting nervously between periods of inane activity. I changed into a hospital gown, placed my belongings in a clear plastic bag, and waited. A hospital representative wheeled in a mobile computer station and asked a bunch of questions, then left. We waited. A nurse came in and started an IV line in my hand, then asked me some of the same questions. Finally, the surgeon came in with hair clippers and a jar of sticky-dot markers to place on my head before the brain mapping MRI. He explained that once in the operating room, he could use the brain mapping and markers as sort of a "brain gps". Sounded pretty cool. He shaved my head himself, something I wasn't expecting, and then placed the markers along my hairline and over the incision area (picture below). Then they wheeled me down to the MRI where I had a quick (comparatively speaking) scan that took about 6-7 minutes. Back to the waiting room for a few minutes, where my family gathered to see me and help the time pass quicker.

Before I knew it, the time had arrived and they moved me to the pre-op area. People started bustling around me, introducing themselves as members of the team that would be working around my head. The surgeon came and took the brain mapping MRI disk for a preview and came back with the unfortunate news that it would have to be repeated. The scan had not included all of the markers, therefore it was incomplete and useless. Down to the MRI again. Then back to the pre-op area. The anesthesiologist came by and taped the back of my left hand to a half moon shaped blue wedge, intended to angle my wrist for an easy approach to my radial artery. I had been told all of this would be done while I was under anesthesia, and I was glad when the nurse said I would be given something to help me relax. I have no idea what time it was. I vaguely remember being wheeled into the OR and being amazed at how white everything looked. Someone asked me what I could see. I think I said "white ceiling".

I woke up in post-op, apparently around 10:30pm. The surgery started late and lasted about 6 hours.( I'm lucky that I was the one sleeping and not worrying.) I was surrounded by family who all seemed to look like they were in an old, sepia-toned photograph. The light was so yellow compared to the OR. I tried to make eye contact with everyone, so they would know I was ok. Then I was wheeled into the ICU.

The first night in the ICU was almost blissful. So medicated, no worries, so tired. It was all over. Sure, my head was wrapped in a turban and I had drains coming out of my brain, but my nurse was excellent, like clockwork with those meds. I didn't even have to ask. I slept.

On Wednesday morning, when my first visitors arrived, I was still pretty upbeat, I think. Expecting to be moved to a different room, where I could have more peace and quiet.(The ICU is a very noisy place, especially at night.) Everything I had read about craniotomies mentioned that the dressings were removed after 24 hrs. I looked forward to that milestone, as well as getting the drain out of my head. It made me cringe to know that there was a tube connecting the innermost part of my brain to the outside world. I panicked when they had to bring me down to the MRI for a post-op scan. Images of a forgotten IV stand being tugged behind the gurney, or getting stuck in the elevator doors raced through my brain. I could imagine the wormy feeling of the tubes sliding out from my head. I began to cry--uncontrollably. I hadn't expected this kind of panic. But it got the best of me. When the first 24 hours passed, and my turban remained in place, it added another element of restriction and confinement. I hadn't been able to sleep at all the second night in the ICU, with all the alarms and noises. I was seriously sleep deprived, not good for someone who's supposed to be healing. I began to have more crying fits and panic attacks about my head being wrapped. I complained to the nurses that I was going stir crazy and I couldn't sleep. I was exhausted, physically and mentally. The thought of spending another night in the ICU was torture, but the surgeon insisted that I remain bandaged until the pressures in my brain were stabilized. Now I understand the reasoning, but at the time I felt like I was being tortured with sleep deprivation. On top of everything, I couldn't pee. I just wanted to go home.

On the Friday after my surgery, my surgeon's hospital colleague finally came into the room and began to unwrap my head. I have never been so happy in my life. He told me I'd go home that very day. I was still squeamish about getting the drain pulled out, but it had been clamped overnight and there had been no troubles with increased pressure. He showed a medical student what to do, and she proceeded to pull out the drain. Thankfully, I felt nothing. All my worries turned to mush. It was a little gross that some of the warm CSF dribbled onto my head and down my neck. Ick. But that was the worst of it. A few hours later, I was discharged directly from the ICU, something that never happens, according to the nurses.

Of all the reading I did beforehand, trying to prepare myself for the craniotomy, I never once came across any account of the hopeless, suffocating feeling of having my head wrapped for days. Maybe I'm the only one that will ever be bothered by it. But maybe someone might read this and be prepared for the possibility that the wrappings may not come off in 24 hours.