Cancer .. Finding Our Way ...

**Normally I reserve my blog for the fun and lighthearted things that life has to offer, however, life does happen and the good also comes with the bad. This blog is my place to share my life, and to keep it real, I wanted to share my story. I struggled for a few weeks to find the words, and finally they came to me in my sleep at two in the morning. So I sat with the light from the laptop and wrote away .. This is the result ..

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It was a Sunday night. I was curled up on the sofa with my husband, watching my favorite show. The Good Wife.  The phone rang, it was my cell phone. Only a few people call my cell phone before dialing the home phone first. It’s usually one of my brothers or my Dad. I saw it was my brother, which was odd to me. It was late on a Sunday, and usually not a good time to chat. He tells me my Mom is being taken to the Emergency room. My heart does what a normal heart does when it gets this type of news, it starts to race.  He doesn’t know the specifics other than that there’s a headache involved. I hang up, and call my sister looking for answers. She’s a wreck. I instruct both her and my brother to call once they arrive to the hospital.  I tell myself it’s a headache, yes, a headache. We have all had one a time or two before, I plead to myself that it cannot be too horrible. I have read that migraines can get pretty painful.  Maybe she needs some good pain medicine. I think to myself, I will stay here on my sofa, wait for the phone call and see what the doctors say before I rush over there.  I unpause the TV, the show resumes, and my mind won’t stop. A thousand thoughts go through my head. I pause the TV again, and tell my husband, I have to go. My instincts are telling me to go. He says what any husband should say, “Ok, I’ll drive.”

We live a short 5 minute drive to the hospital, and I arrive as glamorous as anyone is late on a Sunday night.  I walk through those sliding glass doors adorning my Victoria Secret Pink lounge pants, hair thrown up in a pony tail, and glasses I never leave my house in. The waiting room is empty except I see my brother sitting there by himself. I ask for any news, and he knows nothing except that they rushed my Mom right back. My sister is back in the room with my Mom and Dad. I call her and we exchange spots in the room. I go back there and ask for the specifics. My mom looks like hell. She’s hooked up to every machine imaginable. She’s had a massive headache all day. It turned to vomiting. The pain meds are coming, and they are not working. I’m watching the EKG jump around. The doctors start to order tests, one after another with no immediate results.  In the wee hours of the next day, a cat scan showed some something in the brain.

We learn that cat scans are not that precise, they don’t show specifics. But once the doctors saw it showed something, everything went from zero to sixty before I could blink. She was rushed to ICU. The rest of us made a zig zag pattern through the hospital, going up elevators, walking down long corridors to get where we needed to be. We overtook that cold waiting room like we owned the place. Only two people are allowed in the ICU room where my Mom was placed. My Dad and I are the first ones to go back there. We get buzzed in by a nurse to even get halfway close to where we need to be.  This is something out of a movie. As polite as I should be, and later with much regret, I couldn’t help but glance up at rooms where doors were open. Patients are on ventilators, patients are in pain, patients are crying. Doctors are running down halls to a nearby code blue. My Dad and I push ourselves to the sides of the hall to make room for all the commotion. Is this real? It wasn’t but a few hours ago, I was curled up on my sofa watching The Good Wife. I take a deep breath, and we continue to walk, and of course they put my Mom in the room farthest away. We turn the corner to walk into the room. There must be 3 nurses in there, machines are being hooked up in every which way and my Mom is non-responsive.  My Dad and I are trying to take this in, and figure out what happened because my Mom was responsive an hour ago. We are then approached by this bubbly, fast talking nurse and she starts talking to my Dad and I at what seems to be a hundred words a minute. I try to take it all in. I’m instructed to write phone numbers on a dry erase board, and a password is given to me in case I need to call. Shock is an understatement. These people are nuts if they think we are going to leave and then call in with a password? Really? Do people really do this? We are told what to expect, and that there are cameras in the room and that she is always being watched, so there is no need to worry.  No need to worry? Really? We ask or practically demand to know what exactly is going on. We are told there is something massive in the brain. There is swelling. They show us a picture of her scans. The cloudy shadow took over at least 1/3 of her brain. The swelling has caused her brain to shift.

Oh crap. This is real. My dad and I look at each other. As we manage to take this all in, I don’t know what to think. We were told to bring everyone in. It wasn’t but an hour ago my Mom was awake and talking, and now she’s not responsive. What the hell happened? My Dad and I take the long walk out to the waiting room. I’m sure we were pale as ghosts, and how in the hell do we explain this to everyone waiting.  Waiting were my two brothers, my sister and my husband. We have no other choice then to put our brave faces on, and tell it how it is. We hold it together when probably all we want to do is break down.  I think we are all in shock. Some people take it better than others.  We all make the walk down that long hallway again, and I tell my sister to not look in any rooms, as I try to prepare her that people are very sick in this area. We finally arrive to her room, seems like the longest walk of my life. We all circle the bed as my Mom lies there unresponsive.  It’s a short visit, we all say what we need to say to my Mom, and we all walk back out to the waiting room. We need to gather ourselves, figure out a plan. The only plan figured out was that no one was leaving that hospital, and we all agreed that someone would be in the room with my Mom at all times. We never needed that damn password, thank you very much. I pulled my first all nighter that night and the next night too.

Several hours later, a neuro surgeon came to us in the waiting room. He explains to us, there is swelling, and something is causing it. They need to attempt another MRI since the first one was unsuccessful. They cannot successfully do a MRI until swelling is down. It was a couple of days before we had answers. During this time, no one left the hospital, no one slept for days. We took turns into the room with my Mom, she was never left alone. As swelling went down, my Mom became responsive again, however she didn’t have a clue what was going on. We all took shifts to the cafeteria. My husband knew I was hungry before I even had the time to think about it. My husband delivered me the best grilled cheese of my life from there. My mind is always going, going, going in the meantime. I have my iPad and I Google every which thing I can, what causes swelling in the brain? I read at least 20 different things. I’m driving myself crazy doing this; it could be one of 500 different things.  I needed to accept that and try to be patient.

The news was delivered. There was a brain tumor. That’s what caused the swelling. No real answers or explanations could be given until it was operated on. We were told that usually when something like this happens, the tumor has come from another spot. However the doctor cannot be 100% sure until the tumor is tested. We finally have answers; however they are certainly not the answers we wanted. Swelling went down, and Mom was doing better. After two days she was moved out of ICU and to the neuro floor. It was a spacious hospital room with beautiful views.  It even had a much needed sofa that turns into a pseudo bed. My dad needed that. He hadn’t slept but for 2 hours the entire time. There was no prying him away. Surgery was scheduled for a Friday, and in the meantime, we are all there around the clock. We all took quick breaks to go home and shower and catch a few hours of sleep here and there but we always came back. My Mom always had a room full of us. She didn’t want it any other way.

 

 

The views were beautiful and serene.

 

We were all in this little bubble. No outsiders knew what was going on. My boss knew, as I’m sure that was the case for my sister and my brother too because not one of us worked for that entire week. My Mom asked that we didn’t call anyone in the family yet. She wanted to wait until there was more information. That made sense to me, and of course we respected her wishes for the most part. After talking with my Dad first, it was decided that I was going to call an Aunt.  She’s always had been around the family, someone I could trust, someone who has been around medical situations herself and for other family members. I needed to talk to someone who could help give any insight she could.  Were we asking the right questions, etc, etc?   Although she is family, she was an outsider looking in, and definitely helped with many suggestions and questions. In the coming days, making those calls to other family members was not easy. Responses varied, and some people we’re not happy, they wished they had known from the very moment. However, as they read this, I hope they can understand that we were a little busy.

As secret as I could be, my research continued.  Every time a test was performed, I asked for the reports. I work for a medical insurance company. I’m paid to analyze. I read medical records every day; I know how to navigate Web MD better than most. I know the in’s and out’s of a medical dictionary. I am not a doctor, nor do I claim to be, but the pieces of this puzzle were coming together for me. We have had cancer in our family before.  I lost my Grandma to lung cancer; my mom was also a smoker.  It only made sense. As my research took place, I kept this information to myself.

As Friday was approaching, we were all hoping for the best. As crammed as that hospital room was, we all fit in there together, eating meals, talking, telling jokes, and making the most of the situation. The grandchildren stopped by one night, and that was fun and sure made my Mom smile. As Thursday evening was upon us, and it was getting later, my Mom mentioned that she didn’t want any of us to leave. So, we didn’t. We went home in shifts and all came back in our pj’s with pillows and blankets in tow. We overtook the waiting room on the 4^th floor like a childhood sleepover. All of us adult children, my husband and sister in law, making beds out of chairs, curled up with our favorite blankets and pillows.  I wish I had pictures of that night, because it was a sure sight to see, and yes I even did bring in my Mickey Mouse pillow. In the end, the most important thing was we were all there to send our best wishes on Friday morning as she was wheeled away to the operating room.

 

My brother Mike & Sister Lindsay - just making their selves at home.

 

Probably before my Mom made it to the operating room, we had packed up that hospital room that we had made home for the 3 days beforehand, and made it down to another waiting room. Our names were taken. We would be told once the operation was over. The pretty pink ladies were in charge. Don’t get me wrong, they are lovely indeed. However, they are volunteers and too old to work anymore, I wasn’t very trusting of them to get me the information I needed. And I was right. As time went by, and went by, we heard nothing. I finally made the walk up there, thinking to myself I was being inpatient, and was told that she was out of surgery and in recovery. Sure glad I went up there, we were all on pins and needles. We could breathe a sigh of relief that the operation was over.  We are told only 3 people can go back to meet the surgeons, we all discuss and make choices. My dad, brother and I go back to a little room with 4 chairs. We are told to wait for the doctors.  We all sit in silence, waiting what seems to be forever. The doctors walk in. The brain surgery was a success. They were able to remove the brain tumor. And the results from the fancy test they performed on the tumor were in…. It was conclusive, it came from somewhere else. Now we know indeed, its cancer. And it’s coming from somewhere else. The pieces of my puzzle are being confirmed.  We won’t know for close to a week that it is indeed lung cancer.

Mom is taken back to ICU for recovery.  We are all there moments after she arrives. We walk into the room, and she stares at us like we know something she doesn’t. No one speaks of it. We encourage her over and over that the surgery was a success. The tumor has been removed. Everything that could be going right was. The surgeon said if she was to have a brain tumor, it was in the perfect spot. Not in a spot to cause any damage, and it was easily removable.  We let her recover and for the next 24 hours she remains in ICU, and we all take the rotation again since only 2 people are allowed in the room.  Recovery was a success.

After ICU, we all travelled back to the 4^th floor. We made a home in that hospital room across the hall from the previous room. This one didn’t have such a pretty view, but we got to see the heli-pad this time around.  The nurses weren’t sure of all of us. There was always a room full of us. Some were fine with it, some were intimidated, and we sure got our share of looks. By the time we left I knew many of the nurses names, knew the ones we liked, and the ones we didn’t. We knew what fridge had the best snacks. We had the menu memorized in the cafeteria. We knew our way around the elevators, and I for sure knew what turns to make after I ended up in the mental ward once.

Mom got to go home on day 7 of being at the hospital – and we are thankful. Not so thankful for the cancer diagnosis, but we are thankful she went to the hospital when she did. We are thankful for a successful operation and recovery.

This is only the beginning of the journey we have been on.
In the coming weeks, I will share more.
Thanks for reading.
-Shauna