Attitude Adjustments, Be Happy, Be Kind, Being Strong, Coping, Fear, Happiness, Invisible Illness, Just Breathe, Passion for Living, Support, Uncategorized

Coping Through Fear and Uncertainty

The last couple of months I have been dealing with an issue that I have been afraid to write about.  Actually, up until a couple of weeks ago, every time I talked about it, I would cry, but I am learning to deal with this more comfortably, or as comfortably as possible, so maybe writing about it will be therapeutic…..I have a brain tumor.  THAT is a very difficult thing to say (or write).

After a couple of years of dealing with vertigo off and on (mostly when I was tired, or the lighting was low), headaches, tinnitus, balance issues, and noticing some hearing loss last school year, I finally have answers, following some medical tests.  Our trip to Europe seemed to intensify the symptoms…..I guess from the pressure during the flight?  I tried to pass it off as fatigue or jet lag, but deep down, I knew something wasn’t right.  I felt horrible most of the time we were there.  After we got back, the symptoms didn’t go away.  On July 25th, I was diagnosed with an acoustic neuroma, which is a tumor on the main nerve going to my ear.  My husband was in New York visiting his family at the time of my diagnosis, so I was alone, and very afraid when I found out.  I told him over the phone……  I called my three children, and cried while I told them.  They’ve all been very sweet and understanding, very supportive, and patient with my emotions.  I emailed my four sisters, and they were very supportive. They told me not to worry because they would worry enough for me.  I texted my friends because I didn’t want to cry while telling them.  I texted my pastor.

Basically, this thing has probably been with me for awhile.  It’s not malignant, and it’s very slow growing. For now, it’s small (1.7 cm), and we are lucky to have caught it at this stage.  It’s obviously big enough to be causing some serious problems……….headaches, vertigo, balance, tinnitus, pressure, hearing loss, noise sensitivity, fatigue…….but we have chosen to watch it to see if it is still growing, and if so, at what pace.  If I were younger,  and if the location were different, the approach may be different.  Two of the main concerns are total hearing loss and facial paralysis (it pushes against the facial nerve), and of course, if it is left completely untreated, it can cause death.  It does not grow into the brain, as a malignant tumor would.  As it grows, it pushes against the brain and brain stem.

It’s a rare condition, but I actually have two friends who have had this same thing.  Their tumors were larger, and they were younger, and they each had different treatments. Each one was left with problems resulting from the surgery…..facial paralysis, total hearing loss, epilepsy…..and have a lot of the same symptoms that I have which surgery and/or radiation didn’t eliminate.  My doctors want to wait to see if it is growing before making the decision to go in after it.  If I can learn to manage the symptoms I have, and it isn’t growing, my symptoms may never get worse…..but they won’t get any better.  If I have surgery and/or radiation, there is a risk that these symptoms may get worse.

I have had to do some soul searching throughout this.  I was very depressed at first.  I have had to count my blessings though. There was so much uncertainty before the diagnosis.  Was it MS?  Parkinsons?  Cancer? No, no, and no, and now I have an answer, even if it is scary.  I’ve done a lot of research, talked to my doctor, and also consulted with my friends who have been through this. I’ve decided I have to accept what I have in front of me, make adjustments to my lifestyle, position myself in places where I can hear, try to avoid loud noises (my principal will give me a heads up before those screeching fire alarms go off during drills…..that feels like being stabbed in the ear drum with an ice pick!), get up more slowly, don’t turn too fast, take aspirin for my headaches, be careful while walking or standing, especially in low lighting (the vertigo and balance problems are extreme for me in low lighting), fall asleep with the television or fan on to drown out the tinnitus, get plenty of rest, do more yoga, avoid stress, etc. etc. etc. I definitely don’t have time for anything petty, negative, or dramatic.  I’ve never liked those situations anyway, but now I have a legitimate reason to avoid it and brush it aside!  My health depends on it.

I have decided that if I am to completely come to terms with this, I need to make peace with it.  This is the best way for me to stay positive and be able to face it….as I always do…..with humor. The tumor needed a name.  I thought about Tammy, but since that is one of my sisters, I knew it wouldn’t go over very well (she agreed)! So I have named her Tina, and damn it, Tina and I will be friends, whether she likes it or not!  My children and Al make fun of me for my hearing loss, but that’s okay.  What I think I hear is usually way more entertaining than what they’re saying!  For instance, today at work, they announced that the latchkey program would be meeting in the “portable.”  Well, I heard “toilet bowl.”  What I heard was a lot funnier!!!!

I am so thankful to my children, Lily,  Evan, and Grace, who check on me regularly (even when Evan is in the middle of the ocean on his ship in the Navy, he checks on his mama), keeping my spirits up.  I am thankful to my doctors and modern medicine! I am thankful to my wide circle of friends from California, Kansas, Oklahoma, Iowa, Illinois, Missouri, Ohio, Alabama, Florida Europe, and South America…….it makes me emotional thinking about how much support they’ve given me! I am thankful for my sisters, who keep me laughing with their quirky emails (I’m not the only quirky one), my cousin Danny (who happened to be the first person I told because he just happened to reach out to me after I got my diagnosis).  I’m thankful for my church family who has prayed for me, and has checked on me when we have been able to get there.  I’m thankful for my friends at work who have kept my “little” secret until I have been strong enough to talk about it, and have helped me. I’m thankful for my little dog, Andy, who snuggles with me, giving me comfort and kisses! And most of all, I am thankful for my dear sweet husband, Al.  I know that he is probably more worried and scared than he lets on.  But he is so strong for me.  I’ve lost count how many times I have fallen, and he patiently helps me back up, making sure I’m okay and steady on my feet before letting me go.  Falling like a two year old is very humbling!  Through my headaches, emotions, and all of the financial strain I’ve put on us with this…..he is my ROCK. We may have found each other late in life, but I know that I couldn’t go through this without him.  I don’t have my parents anymore, but I have some very good people in my life!  I am the luckiest girl in the world…….

Life is a party……face it head on, embrace it, and enjoy every minute of it!

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