Tag Archives: acoustic neuroma

The Journey to Normal

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Chef Mickeys crop.jpgIn November of 2014, I had a tumor removed from my brain.  Hearing loss was my only symptom and the only reason it was detected when it was.  I have no idea how long I had been struggling with this hearing loss or when it even started.  I just know I put my finger in my good ear to scratch it in the summer of 2014 and noticed that the volume on the TV went way down.  It was a light bulb moment for sure.

I made the appointment with an ENT and had a hearing test, from there an MRI which showed that I had a 1.48 cm tumor sitting on my hearing and balance nerve.  I weighed my options and had my surgery in November of 2014 at MD Anderson in Houston, Texas.  Surgery went great, only took 5 ½ hours and 5 days later I got to go home!  All of the tumor was removed, there has been no facial paralysis, I still have “some” hearing in my left ear and I am not having any bouts with vertigo.  YEA!

Every day since November 20, 2014 I have been working to return my life to “normal.” Well I am fast approaching the 2 year anniversary of my surgery and returning to normal has turned into creating a new normal.  You expect things to be difficult during the first few months after surgery.  I mean, they did cut open my head and remove something.  Not a minor surgery by any means.

In my new normal, I understand and accept that roller coasters or rough rides of any kind are OFF LIMITS.  Oh and none of those that twirl and spin rides either.  I did ride on Splash Mountain in the Magic Kingdom and I even did the Star Wars simulator ride at Hollywood studios.  A time or two when I thought the simulation was a little extreme, I just closed my eyes.  Worked like a charm.

In my new normal, I have to be very careful with sneezing or coughing.  If either sneak up on me and I’m not prepared for a “controlled” sneeze or cough, I suffer the consequences afterwards.  The entire back of my head feels like it is going to explode.  It takes me 20 to 30 minutes to get things calmed down.  I have learned a lot of massage techniques for my head when the headaches come.

In my new normal, I also understand that my balance is different and I have to be very careful when going up and down stairs and I really don’t want to trip.  I have lost my balance a few times by tripping over something, usually my own feet.  Once I am knocked off balance, unless someone is there to catch me, I will fall.  A couple of weeks ago we went to Disney World with the family.  We were all standing on Main Street in the Magic Kingdom watching the fabulous fireworks at 10:15 p.m. when I decided to move over a little.  I tripped over the train track in the road and was headed down.  It felt like I was moving in slow motion and I knew there was nothing I could do to stop it.  However, my husband who never moves very far away from me, caught me and I did not fall.  My hero.

Dancing was another area I was worried about.  Keith and I love to ballroom dance and I love for him to spin me.  That did not come easy, let me tell you.  We have worked on it and I’m very proud to say that I can do the double spin again.  Of course Keith is right there to keep me moving in the right direction.

I have not gotten back into running yet.  In fact, my entire desire to walk, run or do any form of exercise has been non-existent.  Yoga is completely off the table because it still bothers me when I have to bend over.  Downward dog would be so bad right now.   I have to be careful just bending over to pick up the dog food bowls twice a day.

I have been working for almost a year now to get in control or eliminate the headaches I have been getting since the surgery.  I am pleased to say that it appears I am on a good path with the headaches right now and I am trying to add back walking every day.  My headache regime is meds from neurologist, head and neck message every other week, chiropractic treatment and best of all, acupuncture.  I truly feel that the acupuncture has been the catalyst to make everything work together.  The headaches are mostly manageable now, fewer and farther in between.  I am looking forward to the day when someone asks me about my headaches and I can say, what headaches.

There are still a couple of things I have not tried yet because I just don’t know what will happen.  Tennis is one of them.  Since jarring things or sudden movements make my head hurt, not sure what will happen if I hit a tennis ball with the racquet.  The other sport that I dearly love and have not tried yet is bowling.  I had just gotten a new ball and shoes right before my diagnosis.  Fear has kept me from trying that as well.  I will continue my journey to create my new normal, taking each day one step at a time.  Who knows what will happen next.

One Year Post-Op

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DSC_0875

Thursday marked my one year anniversary of my acoustic neuroma brain tumor removal.  I have found myself thinking a lot about that experience this past week and what I was going through this time a year ago.  I would love to be able to say that I am good as new or that I’m back to doing everything I could do before the surgery, but I’m not.

Now don’t get me wrong, I am very blessed that the tumor was discovered and that I had it removed.  Nothing good was going to come of it, obviously.  But short of having some ringing in my years and some hearing loss in my left ear, I felt fine and had no idea anything was wrong.  It was actually a fluke that it was discovered as quickly as it was. So here I am a year later still working on recovering.  I remember telling myself last Thanksgiving that this time next year, it would be like it never happened.  Well that was wishful thinking. Maybe Thanksgiving 2016 it will be like it never happened.  A girl has got to have hope, right?

So what has this past year looked like for me?  Those first couple of months it was just trying to focus on walking.  It took a while for me to look left and right without getting a bit dizzy.  It was like I was drunk without drinking. Things were kind of woozy.    My surgery was on my left side, so I have only been able to sleep on my right side.  That is still the case 99.9% of the time.  If I lay on my left side for very long, the anger sharks start swimming.  In February I got the green light to do some light running.  I wanted to get back to running like I was before surgery, and I’m still working on it.  I think walking with minimal slow running is a better option for me at the moment.  Since my balance is questionable at times, I am very careful not to trip or stumble.  I have learned the hard way that with only one balance nerve left, it doesn’t take much to tip me over.  I have fallen twice in the last year and let me tell you, it was not good.

I cannot sneeze or cough without the back of my head becoming very angry.  Would love to know when that is going to stop.  I live in Oklahoma where there are things in the air and sometimes I need to sneeze.  I went to great lengths last allergy season NOT to sneeze.  And if I swallow wrong and need to cough, yikes.

Bending over is still an issue and as long as it is, yoga is a no go.  Downward facing dog might send me over the edge.  My head gets angry when I bend over to pick up the dog food bowls.  I have decided that I probably won’t ever ride a roller coaster again.  I think my head would literally blow off or I might just pass out.  But hey, I can still go dancing with my husband and I can still twirl as long as he is standing there to make sure I stop twirling when I’m supposed to.  Any sport which might cause me to fall, which would include water skiing or snow skiing is off limits.  Heck I didn’t do that before my surgery, so I certainly don’t want to do it now.  I was worried that this head issue would cause me problems if I traveled on a plane.  Good news, we went to London and Paris in September and I not only did fine on the Boeing 777, but also on the Eurostar high speed train.

So as I reflect, my main issue is headaches.  I am to the point that I plan my activities around them.   Where am I going to be when the next one pops up and how will I get rid of it?  I always carry Extra Strength Tylenol or Advil with me.  I am fortunate that over the counter pain meds will take care of it; but, I’m taking them every day.  So in August I bit the bullet and went to a neurologist for help.  So far I’ve tried two different types of migraine meds (and I don’t think I have migraines).  Neither did anything and one of them made my night time headaches worse.  I have also gone to physical therapy, which was nice while the therapist manipulated my neck, but with no lasting benefits.  I’ve had one occipital nerve block injection, lasted a few hours.  I have had two trigger point injections in the muscles of my neck, lasted a couple of hours.  I am getting an upper body massages every week and I do think that it is making my neck more flexible.  Next up, I’m contemplating acupuncture.

In August when I first went to the neurologist, they took my blood pressure and they commented that it was a bit high.  Like 160/110 high.  I have never had high blood pressure, it’s usually below 120/80.  Each subsequent time I went in they would take my blood pressure and again, it was high.  Hmmmm.  Well a week before I went to my latest appointment, I started taking my own blood pressure at home and keeping track. OMG, it is off the charts.  One morning it was 177/117 when I woke up!

Now I have headaches AND high blood pressure.  I don’t know if the blood pressure is causing my headaches or if my head pain is causing my high blood pressure.  And the doctor doesn’t know either.  So now we are trying to get my blood pressure under control and we’ll just see how the headaches respond.  Ever see that commercial where the woman has to go the bathroom every few minutes and she has that little cartoon bladder tugging on her?  Well I have one of those and it’s a little cartoon headache with high blood pressure that is following me everywhere. Ain’t nobody got time for that.

I’m officially kicking off my second year of surgery recovery.  My goal, to rid myself of headaches and high blood pressure. To be able to sleep all night, awake refreshed and ready for my day with the energy and stamina to get with an exercise program and to stick with it.  Those are tall orders, but I am so ready.

 

My Little Pity Party

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Mountain Storm BrewingDo you ever just have one of those days when you are your own worst enemy? A “pity party” for one, if you will. Well I am having one of those this morning, and I hate it. I am six months post op from my brain tumor removal surgery and I think I should be feeling better than I am. I am ready for things to be normal again. Please tell me they will be normal again. I am tired of daily headaches, I am tired of not sleeping well at night, I am tired of coming home so tired from work that I just don’t feel like doing anything, I am sick and tired of the continuous rain and I am just sick and tired of being sick and tired. There I said it. Don’t get me wrong, I am thrilled that my brain tumor was not cancerous and that it was successfully removed by expertly skilled surgeons. In addition however, I think I should be able to do whatever I want, when I want. I don’t like to worry whether that glass of wine is going to cause a headache. I don’t like to keep myself from sneezing because I know it will send all kinds of pain waves through the back of my head.

So what has been the catalyst that has sent me over the edge today? Well today is my first summer Friday off from work. We work longer hours during the week and our offices take Friday off. I love this time of year when we get to do this. So I had several things I contemplated doing today to celebrate. Thought about driving to Norman to have lunch with my former boss, thought about driving to OKC to do a little shopping, thought about doing a little gardening….. None of those things are happening today, because at 11:45 last night a headache woke me up and I sat up with it until 4:30 a.m. Took my Tylenol, took my Advil, used ice pack, used heat pack, just couldn’t knock it out. At 4:30 a.m., I stumbled back to bed and thought I would try and sleep again. Exhausted I did fall asleep, but my dreams were riddled with the pain that continued in my head. Finally at 6:50 I just got up again and began the cycle of trying to get rid of the headache again. So here I am at 10:30 and the pain is finally beginning to ease off, but not completely gone and I am exhausted and cranky.

This particular headache is not associated with my surgery. This type of headache I usually get 5 or 6 times a year. I don’t know what it is, why it happens and it really just takes time to get rid of it. Have been to the doctor over the years, nothing is resolved about it. Sometimes the only thing that helps is a sinus headache pill. You know, the kind that has the drug in it you have to sign your life away at the pharmacy to get. So at 8 a.m. I popped one and I think it is helping.

So in November I have a surgery to remove my little brain tumor and of the three surgical options that could be used, my surgeon chose the one that was best for me, retro-sigmoid. Guess what the side effect of having that type of surgery is, headaches. Now in addition to my regular headache issues, I have these as well. The only difference, my surgical headaches are daily. I take Extra Strength Tylenol daily or Advil depending on what part of my head hurts. I use a heat wrap on my neck every morning, evening, night and many times at work. And are they ever going to go away, or is this my new normal?

So that is what happened to me this morning. I just got to feeling sorry for myself and the tears began to flow and flow and flow. I have held it in so long that today was just the day to let it go. Sometimes a girls just needs a good cry.  Eleven years ago today, Keith and I had our first date.  The event that forever changed my life for the better.  Now it’s time to put on my big girl panties and move on.  Today is a day to celebrate, and I just don’t have time to feel crappy.

Thanks for letting my whine.

Eight Weeks Post-Op

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Shoes 2Well it’s been eight weeks since my little surgery and I’m plodding along. I have been back at work for two full weeks and that has been great. All that sitting at home recovering was beginning to turn my brain into mush. Sitting too long made my neck and head hurt. Oh heck, everything makes my neck and head hurt to a degree. I think it may be the new normal for a while. The first day back in the office was weird, but after that I felt like I had never been gone. I’m sure being away from a person’s job for seven weeks makes it difficult for anyone to just jump right back in, but add the additional issue of brain surgery and it kind of takes on a whole new meaning.

One of the things that is recommended for people who have had this surgery is to walk, a lot. It helps with the balance and dizziness. I did a really good job of this initially when I got home. I was outside walking through the neighborhood the very week I got home. The weather was great and I was VERY woozy. In fact it was scary because things were not in great focus and I could not move my head very far or very quickly. But I made myself do it. Then icky weather arrived and the cold air makes my head hurt so I went outside less and less to walk. I do have a treadmill upstairs, but didn’t go up there and use it. And now that I’m back at work, I have even less time to walk. Don’t you love excuses? I know I do.

So yesterday the weather in southern Oklahoma was finally better. The temperature in the low 60’s by the afternoon. A brisk southwesterly wind initially and the sun was shining. Haven’t seen much of the sun around here for a while and it was a welcome sight. So yesterday morning I made yet another commitment to myself to get my butt up and out the door for a nice walk. Take in a little fresh air and get some vitamin D. I had not ventured out of my neighborhood to walk since the surgery, so today was the day.

I got to digging around in my closet and found my workout clothes. Yes they were right where I left them months ago. So I bundled up, got my ear buds, my cell phone, my sunglasses and something to cover my ears and out the door I went. Today’s challenge: Regional Park! With my Fitbit all charged up I went to my Fitbit App and told it to log my walk and off I went. I rounded the corner of my house and the southwest wind hit me. Whew, it’s a little chilly, but I shall persevere. I headed south out of my neighborhood, crossed behind the AHS girls’ softball field and there I was on the city’s walking trail headed for Regional Park. Continued south at Veterans Boulevard, crossed Commerce, worked my way passed Skateland and Daylight Donuts and there it was just around the bend, Regional Park. It has been months since I had been in the park and I have missed it. Now it’s time to put on some tunes, which of course have the perfect walking beat and help me put a little spring in my step.

I am officially in the park and my Fitbit App tells me I have already gone a mile. Whooohooo. So how far should I go? I could just walk up to the skate park and then go back home. I could walk up to the softball fields and then go home. I could go through the woods over by the pavilion OR I could go all the way to the top of the walking trail. Since we moved to our new house last summer, I have never gone from our house to the top of the walking trail and back and I wasn’t completely sure how far that was. But you know, today was the day to find out.

The first part of the adventure is downhill, piece of cake. Then you get to the bottom of the hill at the skate park and it’s uphill for a bit. A good bit actually. I could feel every muscle in my body engaging. I kept telling myself to breath, that always helps. So just about the time I got to the pavilion, my Fitbit tells me I have walked two miles. Well ok. My favorite part of the park is walking through the heavily wooded trail behind the pavilion. It’s beautiful and peaceful. I love listening to the wind blow through the trees, when I don’t have my earbuds in that is. Today I’m stepping to Lady Gaga, Katy Perry, Flo Rida, Cee Lo Green, Psy, Usher, LMFAO, Foo Fighters and Rihanna. An eclectic group of songs I think all motivating me to keep moving.

Since balance is an issue, this particular walking trail is perfect, because it’s hilly and uneven. There are times when the path gently slopes. Makes me really work hard on the uneven surface with my uneven balance. I am fast approaching the top of the walking trail when my Fitbit tells me I have gone three miles. Wow. Do you know what that means? It means that I am three miles away from home and I still have to turn around and get home. Yep, by the time I had gotten home, I had traversed 6.07 miles eight weeks after brain surgery. That is the farthest I have ever walked at one time. By the time I went to bed, my Fitbit said I had taken 17,000 steps. Well it was 16,984 when I crawled into bed so I got up and walked to the kitchen and back so it would officially be 17,000.

So this morning, as you can imagine, my feet hurt and most every muscle from my waist down hurts. But it’s a good hurt. My pinky toenail lacerated its neighboring toe so I also have that to contend with today. Nothing a Band-Aid can’t solve. So enough whining already. I laced up my shoes again this afternoon, headed out but only for a 3 mile adventure this time. For all my Acoustic Neuroma warriors out there, hang in there. You can do it and it does get easier every day.

Peace be with you.

It’s a Process

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Water Trees

I am ready to admit that I underestimated the magnitude of this surgery. Twelve days ago I had my acoustic neuroma brain tumor removed and I am now home recuperating, thanks be to God. I had a couple of months to mentally prepare for this event, connected with others who had acoustic neuromas removed and I simply felt like super woman when I got ready to go. I was jolly in the office, joked about having a brain tumor and tried to make it as simple in my mind as I could. But again, sometimes I can be wrong.

The day before my surgery was spent on pre-op appointment after appointment. Not a lot of time to think about the event itself. My final test for that day came after 5 p.m. with my surgical MRI and by 6:45, my mind began to spill over into what the next day might hold. I began to feel the small pangs of fear within me. Not wanting to show that, I tried to keep the stiff upper lip. My daughter finally arrived which was a wonderful thing, but seeing her made me more vulnerable. I don’t get to see her a lot so when I do I get emotional. This was no exception.   So here the four of us were, my husband, my son and my daughter, trying to make small talk Wednesday evening and trying to mentally prepare ourselves for the next day, which would start at 4:15 a.m.

We were told to check in for surgery at 5:15 so at 5 a.m. we all started the journey from our hotel rooms across the street to surgery. We were walking together but my insides were screaming. Keep it together Marcy. When we arrived there were lots of people there waiting to check in as well. Guess it was a big surgery day in the hospital. It finally got to be my turn. I checked in and thank God they let my family come back and be with me until they took me to surgery. I was on the verge of tears every second and I did not want to cry in front of my family. I needed to show them I was ok and strong, right? Initially they only allowed two people in the family to be with you at a time. But my daughter has never been one to take NO very well, so next thing I know, there she is. Good job Loni.

We continue to make small talk while all the people come in and out of the room explaining to us what is going to happen and asking me 9,000 questions and most of them are the same questions. At this point all I can think of is I am ready for you guys to knock me out because I am scared to death. It is finally time and they start to wheel me out of the room and then it happened. A few tears leaked from the corner of my eyes and then there was nothing.

I am thrilled to tell you that all of my tumor was removed and I have no facial nerve damage and at the moment still have some hearing in my bad ear. My balance nerve is a bit woozy, but that is normal and one of the things I will be adjusting to few for quite a while. My 1.48 cm tumor was removed with the Retrosigmoid/sub-occipital surgical approach, which involves exposing the back of the tumor by opening the skull near the back of the head. This approach can be used for removing large tumors and offers the possibility of preserving hearing. The surgery was scheduled for 10 hours but was concluded in 5 ½! Now the process begins.

My memories of those five days in the hospital are blurred and acute depending on the day and event. I remember telling my husband on more than one occasion that this was harder than I had anticipated. In fact, I may have said it to him daily. At first they kept me pretty drugged to keep me comfortable. I have never had morphine before but when the nurse would come in and put it in my IV, I knew it. Didn’t know much after that, but I could feel it move through my body. That was weird. After a couple of days I tried to back off of some of the drugs because it just made me feel groggy and icky. I had no appetite and of course my nurses were constantly concerned about the amount of fluids going in and out of me and almost every conversation included the questions, “have you pooped today?” Leave me alone people.

Now for those of you who have been in the hospital or have had loved ones in the hospital, you know that getting a good night’s sleep is rare. I mean you can start off sleeping great, but someone has to come in every few hours and check your blood pressure, temperature and put that little clip on your finger to check your oxygen levels. I had gotten pretty good at just having my arm ready and literally sleeping through it. The last morning I was there, my 4:50 a.m. blood pressure nurse comes in and does her thing and I did mine. She leaves and as I am just dropping back to sleep she steps back in my room and she is asking me something. Well first off she is talking to me from my bad ear so I have no idea what she is saying. I turned over a little and said “what?” She repeats herself; “Since 11 p.m., how much liquid have you had to drink and have you pooped.” Now I know I just had brain surgery and I am on pain pills at night, but I’m not sure I heard her correctly. I make eye contact this time and said, “WHAT?” She repeated the question. Is she kidding me? I have been asleep since 9 p.m., and under the influence of pain meds. When would I have been up drinking and pooping? Didn’t she wake me just five minutes ago to take my blood pressure? I am sure the “tone” of my response was not very friendly, but at that moment I really didn’t care. I looked sternly at her and told her I had been asleep since 9. That was the morning I knew I needed to go home.

So this morning I begin my seventh day at home. I can tell that I still have inflammation because hearing out of either of my ears is difficult. Too many sounds at one time are difficult and become unbearable. My eyes are very sensitive to light. I exist in a constant state of wooziness with the feeling of cotton in my head. It’s a process.   I started out really well getting out a walking those first few days at home and I was beginning to think I was super woman again, then my dosage of the steroid I was being given got cut in half and my reality changed. Didn’t realize how much the steroid was boosting me. I know now. Had a bit of a setback day Saturday because of it, but it is what it is. Keith went back to work yesterday morning so it’s just me and the dogs. I am sick of TV and sick of sitting around and this is only my first week home to recuperate. Typing and reading is difficult as my ability to focus on words for very long is difficult. So much for catching up on my reading right away. I guess it’s good to remember that I’m not on vacation here. I am undertaking a very difficult job, recuperating from surgery.

The stiches come out Thursday and the following day I CAN WASH MY HAIR. Keith has been washing out my hair in the kitchen sink for me every other day or so which has helped, but I need to be able to do it myself and actually try and style it. Then my surgeon tells me that I have to wait three months to touch up my hair color. Get ready friends, we are all getting ready to see the actual color of my hair and I’m scared. Maybe you should be too.

So the process will continue and each day will be better. Taking things slow and being patient will have to become my new normal. All in all I feel pretty good and am grateful to be on the other side of it. So this holiday season will be at a slow pace in the King household and that is ok. I may get some Christmas decorations out and maybe I won’t. Maybe a tree goes up and maybe it won’t. Maybe I’ll wrap packages, maybe I won’t. But whatever I do, it will be with peace and love in my heart and a grateful attitude that I’m Ok [thanks be to God].

Peace be with you.

 

Preparing

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Grapes 2This time next week I will be on the other side of my brain tumor surgery. Whooohooo. I find myself thinking of little else as the countdown begins for our little trip to Houston. Today I am spending some time just enjoying the simple things in life. This morning it was hot coffee in my favorite chair covered in dogs with a fire in the fireplace. Later it was a trip to “Christmas in the Barn” south of town. Since it is a bit chilly here today, we bundled up and walked hand in hand around the craft fair looking at all the fun stuff. Wafting through the air was the smell of pinion wood and if you got a little cold, just stop by a fire pit to warm yourself.   Yes, today I am beginning the mental preparation.

I had planned in my mind to work until noon on Monday so I can come home and get ready for the trip both mentally and physically. But I think my boss may have other ideas. I’m pretty sure I mentioned in our staff meeting last week that was my plan, but yesterday he started talking about us meeting at 2:30 Monday. Well, what is he thinking?   Not sure by 2:30 my mind won’t be already moving on, but will stay as long as he needs me to, but after that 2:30 meeting, I gotta go. Not only is he worried about me, but I’m worried about him and the office. Hope it’s still there when I return. [wink/wink] They’ll be fine.

When I was trying to decide when to have this surgery, all I really looked at was what would cause the least amount of disruption at work. When was the best time to be gone? I figured that time frame out and scheduled my surgery. Well let me tell you what I did not consider and I may need to receive some kind of worst grandma in the world award for this one. The day before my surgery, my grandson turns 6 and the day after my surgery, my granddaughter turns 3. I can still recall my daughter reminding me that she will be missing her children’s birthdays. OMG. What kind of Mimi does that? I do have a brain tumor you know and can’t be held accountable for my actions. That’s my excuse and I’m sticking with it, for another few days anyway.

So what do you pack for this kind of surgery anyway? I have already been told by my doctor that the day before my surgery, I can have no makeup on because they are going to put some kind of dots on my head and face. Great, no makeup. I hope he recognizes me and that I don’t scare the living daylights out of people. AND, that morning will be the last time “I” can wash my hair until the staples come out of my head. Um let’s see, that’s 10 or 14 days. Are you kidding me? I am thankful my husband doesn’t love me for my beauty alone.

So back to this packing thing. Ok, I don’t need to take hair care products and I guess I really can leave my make up at home. So If I have to be in the hospital for 4 or 5 days, what’s a girl to wear? I refuse to stay in that stupid little hospital gown beyond the day of my surgery. I have a couple of cute comfy shirts I was thinking about taking, then I remembered that they would have to be pulled on over my head. Hmmm, not sure about that. I have soft stretchy pants that I certainly will be sporting. I have also been told that the next day they will have me up and walking. Walking may be a bit of a stretch. Let’s call it preparing to walk in case I have balance issues. I just really don’t know. I’m telling myself it will be no big deal. They will tell me it’s time to get out and do a little walking and I’ll say, well ok, let’s go. Guess I should take a pair of walking shoes. Keith has reminded me that I will probably have to use a walker for a while until we are sure about my balance. I’m ok with that.

Keith, Craig and I will start our little journey to Houston some time Tuesday morning. I would like to get there and get settled in and eat at one of our favorite restaurants. My pre-op stuff starts at 8:30 the next morning and I literally have something every half hour with my final appointment scheduled for 5 p.m. I did notice they gave me an hour for lunch. My daughter’s plane arrives from Little Rock at 6:30 p.m. and Keith will go out to the airport and retrieve her. We will have a nice quiet evening together and then Thursday morning, it’s removal of brain tumor time.

Yes, I’m nervous but I think I’m handling it ok. I have heard several time frames for the surgery: 4-6 hours, 10 hours and 12 hours. I’m hoping for the 4-6 hour option myself and I know my loved ones sitting in the waiting room will be as well.   I am so grateful to have the three of them there with me. They are my three favorite people in the whole world and I love them so much. I am also thankful for all my friends who are praying for me and for those who are praying for me and don’t even know me. I am humbled by all the support I have received. Thank you all. I know that God will be with me during this journey and he will guide the hands of my surgeons.   So I’m signing off for now and as soon as I get rid of this brain tumor and my thinker is working again, I’ll let you know how it went.  Peace be with you.

 

At the One Month Mark

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TLF 2014

On month from today, I will have the unwelcome visitor inside my head eradicated!  Even though I am nervous, I am also just ready for it to be gone so I can get on with my life.  AIN’T NOBODY GOT TIME FOR THAT.   I have found an Acoustic Neuroma Facebook page and I have been reading posts from people who have had surgery and those who are going to have surgery.  While it is wonderful to know I am not alone in the world with this little brain tumor, some of their stories are scary.  What I have to keep in mind is that everyone is different, everyone handles surgery differently and their experience won’t be my experience.  I told Keith that I was not going to have any major pain following the surgery, that I was going to be up walking down the hospital halls the next day with him by my side and we would go home four days later and have a wonderful, yet quiet Thanksgiving.  That’s my story and I’m sticking to it.

Since deciding to have the surgery, my mind thinks of little else.  Oh sure, I am able to do my job and lead a normal life, but “the event” is never far from my mind.  I find that I’m even more emotional than usual.  Case in point:  Last week I wanted to drive by my childhood home.  I took the familiar route and when my car turned onto the street, tears welled up in my eyes.  What is with that!  Last weekend we attended a funeral for my son-in-law’s grandmother at the Episcopal Cathedral in Oklahoma City.  The service was so moving to me that I caught myself tearing up during some of the hymns.  When I go on my long walk/runs, my mind is all over the place and inevitably I think of my parents and tears fall or I think about my children and how much I love them and tears fall or I remember just how lucky I am to have the husband I have and tears falls.  I hope this extra emotion is a direct result of this brain tumor because I need to toughen up.

In addition, I am going to be off work 7 weeks.  EEK!  Will I even have an office to return to????  Just kidding, kind of.  I am trying to think of all the things that need to be taken care of in my absence.  That in itself is a bit overwhelming.  I don’t want to cause any undue burden on anyone, because we are all busy at work.  I tried to schedule this thing when it would be the quietest in the office and I hope I have succeeded.

Keith and I went dancing last weekend.  It was our annual Two Left Feet Club Halloween dance and we got all dressed up.  He was Captain America and I was Batgirl.  It was so much fun and our favorite singer, Neil Davies, was the entertainment.  Neil gave us the opportunity to waltz, cha cha, tango, bolero, do a line dance and a little Texas swing before calling it a night. At the beginning of the evening we learned that our hospital foundation is planning a big New Year’s Eve dance at our convention center and everyone from our dance club is invited.  In fact, he said we are all being “featured”.  Not really sure what that means, but it does mean that I have to get all better so I can go dance.  That gives me 6 weeks basically after surgery to be ready AND I WILL BE!  We will get all dressed up, Keith in a tux and me in a formal gown.    We will dance until the cows come home and at midnight with a glass of champagne in my hand, I will kiss the love of my life as we begin another year together.

Now I am all big talk about this recovery thing, now I just have to get myself pumped up for “the event”.  Keith and I will go down two days before on November 18 and then I have all this pre-op stuff on the 19th.  Nurse Susan says I am going to be one busy gal that day.  Hopefully I will be so busy, I won’t have time to dwell on “the event”.  In talking to my doctor, he says the surgery should take 4-6 hours, ok I can deal with that.  Nurse Susan says it will be 10 hours, not liking the sound of that.  One of the ladies I have found on the Acoustic Neuroma site who has the same doctors as me in Houston said her surgery took 12 hours.  I really don’t like the sound of that.    Again, my experience will be different, my experience will be different, my experience will be different.  If I say it three times will that make it so, or did I need to click my heels together when I said it.  Wait and I can still do that.  Obviously, I’m hoping for the 4-6 hour surgery.  While I will be asleep and won’t care, my husband, daughter and son may have a hard time if I am in surgery for 12 hours.

Speaking of my husband, daughter and son ….. I am so blessed that all three of them will be with me.  They are the three loves of my life and their faces are the ones I want to see when I open my eyes.  Each one of them brings me such joy, happiness and love.  With them by my side, I can overcome anything.  I am also blessed to have many in my community praying for me.  People have been coming up to me and telling me that they are praying for me or that I am on their church’s official prayer list.  As I have said before, this Episcopal gal accepts prayers from all religious denominations.  I am receiving prayers from out of state as well.  This “Oklahoma gal” accepts prayers from all states and countries.

In looking through my instructions of what I should and should not have at the hospital, they suggest I wear NO jewelry.  Are they kidding?  So I have four items of jewelry that I always wear:  my wedding ring, my mother’s wedding ring, my father’s wedding ring and my Daughters of the King cross.  So in order for me to be OK with this hospital rule, my husband will hold my wedding ring until he can slip it back on my finger and I want my daughter to wear my cross and parent’s wedding rings for me.  When I feel like eating, I want my son to make me an Herbalife shake and keep my tea and aloe jug full.

So today I begin the journey of mentally preparing for “the event.”  I am also continuing my physical activity routine so my stamina will be good, just in case I have to be under anesthesia for 12 hours.   It feels appropriate for me to close this blog with one of my favorite things from the Book of Common Prayer:  Open my lips, O Lord, and my mouth shall proclaim your praise.  Create in me a clean heart, O’ God and renew a right spirit within me.  Cast me not away from your presence and take not your holy Spirit from me.  Give me the joy of your saving help again and sustain me with your bountiful spirit.  Amen.

An Unwelcome Visitor – In My Brain!

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MD AndersonIf there is one thing I have learned in my 50+ years of life is that life is full of ups and downs, blessings and curses, highs and lows, good and bad. It is truly a mixed bag. Some people seem to have more bad than good and some people never seem to have anything difficult happen to them. I think my life falls somewhere in the middle. There have been many times in my life that I have just floated along like a butterfly unaware of anything bad, nothing ever touching me. Then there have been times when I have been down in the muck and thought I would never get out. Those have all been learning experiences for me. They have made me who I am today and the highs and lows and blessings and challenges will continue to shape me, but they will not destroy me.  They serve to make me stronger.

Ten months after I married the man of my dreams, he is diagnosed with cancer. Together with God and MD Anderson, we kicked cancer’s but and just three short weeks ago MD Anderson officially graduated him and told us we didn’t have to come back. What an awesome feeling and an answered prayer for sure. For five years we continued to make that trek to Houston for his checkups. We jumped for joy and were giddy all the way home. Keith said to me, “We never have to come back here.” My response? “I know, unless I get sick.” Famous last words.

Last week I learned that I have an acoustic neuroma. A “what” you say? Basically it is a “benign” tumor in my brain that will have to be dealt with. It is not cancerous, it grows very slowly but it has to go. My first symptom, like millions of us out there, was Tinnitus. My left ear has been ringing for 9 months if not more. I have lost track because I spend all my time trying to ignore it. Then right as we are moving into the new house, I noticed that I am not hearing as well out of my left ear. It was like I was wearing an earplug. Things were kind of muffled. So off to the doctor I go, have an MRI and there it is, the unwelcome visitor in my brain. All 1.46 centimeters of it. Well crap. My local doctor sends me to a specialist in OKC who tells me what I have and what my options are. As he is describing the three possible surgical options of going into my brain, I could literally feel all the color drain from my face. He gave me the good, bad and ugly of a surgery. Then he gave me a little information about the “gamma knife” radiation option, which initially sounded great, but by the time he finished, wasn’t a perfect option either. At the end of his speech he asked if I had any questions. I can’t even speak at this point. Then just over my left shoulder comes a very strong voice, my hero husband who has LOTS of questions. Keith jumps right in and is asking questions right and left, some I am grasping and some I’m not. Then Keith asked the question, “what if we do nothing?” I perked up a bit for that one. Doctor said, “Eventually, she will die.” So much for doing nothing.   The doctor wanted to make sure that I understood that it was not a death sentence, it was fixable and it WAS NOT cancer. That did make me feel better. Obviously we have some research to do and some decisions to make.

In the car heading away I know I have to call my daughter who is waiting 350 miles away to hear what this doctor said. We talk about it, I tell her what the doctor said and that we didn’t have to do anything immediately. We would be exploring all options. She agreed, more research and exploring all options. Keith, trying to cheer me up and take my mind off it, takes me to test drive new cars. Great distraction!

We arrived home and I am trying to be brave. On the inside I need a good cry. On the outside, the tears aren’t coming. I admit it, I am scared. I have another conversation with my daughter who has spoken with her husband, Charles. My daughter is convinced that if I need surgery, we just need to pack up, come to Little Rock and have it done there. Not a bad idea.   We go to bed for the evening and I’m doing a little reading when my daughter calls again right at 10 p.m. Her message to me when I answer the phone, “Charles wants to talk to you.” Charles works in the medical field and with Neurosurgeons. I guess he has been kind of sharing my “issues” with them casually as I go through these tests. They have given him opinions and what not. So when Loni called him about what the doctor said about my “surgery” options, he called to make sure that I DID NOT let this ENT surgeon drill into my head.

The next morning I have my instructions from Charles: get another copy of my MRI disk and overnight it to him. He will ask his neurosurgeon to look at it and give us an unbiased opinion. We really liked that idea. So off to the hospital I go to get another copy of the disk. By the way, the little gal in medical records is not very friendly. She literally made me feel like I was imposing on her. Next off to the UPS Store to overnight it to Little Rock. By the way, the people at my UPS store, VERY friendly and VERY helpful.

So now it is Sunday morning and I am still thinking about my options. It’s hard to think about little else. My in-laws and brother in law were in from Texas and they did provide some distraction from my little tumor friend, but it was never very far from my mind. Then Keith and I wondered if MD Anderson would look at it. I’m thinking no since it’s not cancer. Then Keith replies, “Not cancer, but it is a brain tumor.” Good point. I went to their website and typed into the search: acoustic neuroma. OMG, they have an acoustic neuroma center and it’s part of the Head and Neck Center where Keith got treatment. About 30 minutes later Charles calls me. His neurosurgeon has looked at my disk. His response was if it were his wife, he would go the gamma-knife route. Then he said, “She needs to go to MD Anderson in Houston, Texas.” Feeling a bit like a God thing here. In fact, Dr. Thomas knows one of the head docs in the Acoustic Neuroma Center and he got the ball rolling to get me an appointment! Charles continued to follow up and by Wednesday, I had an official appointment for next week. Now I guess I can classify Charles as my hero son-in-law.

Yes, we are headed back to Houston, to the same place we never thought we would see again. To the place we know like the back of our hand. To the place that I entrusted the life of my husband and the place that did not disappoint. I am anxious to see what they suggest and how we will proceed.

I’ll keep you posted on the progress. Stay tuned.