Tag Archives: brain tumor

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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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.

I Can Start Running Again!

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Running GearIt has been 14 weeks since my surgery and I am so ready to be normal again. I hope normal is an option. But maybe I am actually shooting for normal plus. Yes, let’s say I’m shooting for normal plus. I had my three month post-op appointment in Houston a week ago and saw neither of my surgeons. Bummer. One was not going to be there and had to cancel his portion of my appointment and the other one got called into emergency surgery. I still had the MRI and the hearing test and both were fine. Nothing has grown back according to the MRI [awesome news] and my hearing is no worse than before the surgery. I can live with that for now.

What I really wanted from that appointment was for my surgeons to brag on how wonderful I was doing and that my life could get back to normal. I wanted them to see what a great job they did. Instead, my ENT surgeon’s resident met with me. Now I could have hung around in Houston for several more hours until Dr. Gidley got out of his emergency surgery but I knew I was ok.  I didn’t need my surgeons to tell me that.  Besides, a girl does have her priorities.  I had a hot date with my husband to go dancing.

I have been really anxious to get back to running so I asked the question to the young resident. Can I start running again? He told me I could definitely start back, just to take it slow. No worries there. Slow and easy is my thing. I have put back on all the weight I had worked so hard to lose two years ago, so I am essentially starting over yet again. I am ok with that too.

The first thing I did when we got home was to reload the “From Coach Potato to 5K” app back onto my iPhone. I remember so well the first time I used it three years ago. Keith and I had participated in the A2A 5K here in Ardmore in 2011 and I literally walked 90% of it. I had never run before and had never trained to run. I had no expectations and we were only participating because Keith’s employer had encouraged all their employees to be a part of the event. So we did. After that we both kind of got the running bug and decided that we would be better prepared for the next year.

This is where my little 5K Runner app came in. Keith got us a home treadmill and everything. We really didn’t have room for it, but we crammed it into the little third bedroom Keith was using for an office. This cute little app starts you off with a 5 minute warm up and ends with a 5 minute cool down. In the middle, you learn how to run. The first time it has you run, you run for an entire minute! Do you know how hard that was for me? That one minute seemed like an eternity and I was breathing like a freight train. I will never be able to do this. My thighs were screaming and I was getting shin splints.

Somehow I got through those three days of one minute runs and then it got jacked up to 1 ½ minute running intervals. Again I would tell myself, I can’t do this! I remember the day I knew I was going to have to run for 2 entire minutes. I told Keith, “I can’t run for two minutes.” He just looked at me and smiled. He’s a machine and was already running his three miles pretty effortlessly. Let’s just say it’s easier for men can we? Little by little I continued to work the program and when I participated in the A2A 5K in 2012, I cut six minutes off of my first years’ time. The next year, I ran the entire thing. I did not set any land speed records, but I ran the entire thing. I had reached my weight loss goal and was feeling pretty good.

Now here’s where life and excuses come into play. Shortly after the 2013 A2A I found out that I have three bulging disks in my neck with bone spurs. My doctor told me to quit running. He said it was the worst thing I could do. I was so bummed. I had worked so hard and it was something I was really learning to enjoy. Of course this is also the period of time when my dad’s health was not great and things with him were consuming me. So for the next couple of years, my exercising was spotty and pretty inconsistent. In July of 2014 I rededicated myself to starting over with my health and in September I found out I had a brain tumor. The violins are playing very loudly here. Can you hear them too?

So once again I am starting over. My intentions are always good, it’s just the follow through. I can think of it like getting over an addiction, one day at a time. Oh and this week I heard on the news that sugar is as addictive as cocaine. Well it really was hard for me to not eat that hot roll and Santa Fe Steak House last night, so I ate it. Let me stop thinking about that hot roll and get back to my point, which is starting over.

So last Saturday I got out the shoes, got my iPhone, plugged in my tunes, turned on my 5K Runner app and I went out into a beautiful 53 degree sun shiny day and headed for the trails by my house. It was awesome. I did my five minute warm up like I was instructed and then my app told me to begin running. Yes, here we go. I started off [very slowly of course] and wasn’t even thinking about it. I had some good tunes on and I was looking at the scenery and I no more got started that my app told me to “slow down and walk”. Had it been a minute already. I’m not even out of breath. What is the deal? This went on for about 20 minutes; walk 2 minutes and run 1 minute. When I was done with the day one workout I was shocked. I hadn’t even gotten out of breath. That one minute seemed like 15 seconds. Maybe I haven’t lost everything I had worked so hard to achieve prior to my surgery. Yippee.

Since last Saturday the weather has been crappy and my training has been taken up into the bonus room where my old friend the treadmill sits proudly. She and I have met several times this week for my one minute bouts of running. This morning however, I began week two on the app and had to run 1 ½ minute intervals and I did it without collapsing. So exciting. Maybe the following week I will be at the 2 minute run interval. I know at some point it will get harder and I can’t wait.

I continue to move from normal to attain normal plus.  Next step?  Getting my hair color fixed!   I long for the smell of hair dye and to kiss this dishwater blonde hair goodbye.  I just have to hang on one more week .

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.

 

I Can do This!

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pigeon 1Sometimes things in one’s life can be a bit overwhelming. The decision whether to get rid of the unwanted guest in my head by surgery or gamma knife has been consuming most of my thoughts.

Keith and I zipped down to Houston this week to talk to doctors at MD Anderson in their Acoustic Neuroma Center. Who knew? It’s a God thing remember? It did feel very odd being on the other side this time. My place there has always been as caregiver now I am the patient. Can’t say I like that very much. We met with some very nice and well respected doctors in this field. While none of them really told me anything I didn’t already know, I felt at ease with them and began to trust that I had come to the right place.

We did have to get out of our comfort zone though. We always stay at the Rotary House, which is just across the street from MD Anderson. We did not have enough preplanning time to make a reservation so rooms were available.  We picked the next thing we knew which was the extended stay hotel a few blocks away.  This was our home for 3 weeks when Keith first started treatment. The same place where we got our car broken into. The place where we met another couple from Ardmore whose husband was being treated. A place that allows you to bring your dogs with you. By the time we got there, it was after 8. When we were checking in, they informed us that they had given our queen bed away and we were given a room with two double beds. I could see the lines of concern forming between my husband’s brows as he said, “Why do I have a confirmation number for a queen bed, if you have given it away.” We were both too tired to argue so we made it work.  It actually felt plenty big because there were no dogs between us hogging the bed.  Sometimes our big king bed at home feels very small.

Our morning started bright and early as I had to check in at 7 a.m. for an 8 a.m. doctor’s appointment. Now I will tell you what the MD in MD Anderson stands for: Most of the Day. We experienced that over and over five years ago and we were starting our morning off the same way. Checked in at 7 a.m. and was told my appointment had been moved to 10 a.m.

After a quick breakfast in the cafeteria, we decided to go outside into their beautiful garden areas. It was a warm morning, flowers were blooming and the birds were out singing. We plopped down in the area where we always go to and up comes a pigeon and little scraggly bird with no tail. I never seem to have food at these times. Keith was prepared with a granola bar in his bag. The pigeon looked very healthy so I worked on feeding the little no-tailed bird. He got his fill and went on. Not the pigeon. Is it possible to fill them up? We decided to get a little creative and see if we could get him to eat out of our hands. Nope, not going to do it. Next we put food on the end of our shoes. Success. Then word spread and all of a sudden we had 6 or 7 pigeons. The one little pigeon did his best to shoo the others away, but alas, there were just too many. I am breaking up more of the granola bar when one of the pigeons fly’s up and gets on my hand! OMG! I am hand-feeding this pigeon. It was the greatest thing ever and what a way to start my day. Then Keith thought he would give it a try. Success. It was awesome. As we walked back across the street to head for my doctor’s appointment we see a sign that says, “Do not feed the birds.” We both agreed that there was no sign where we were sitting telling us that.  No rules broken.

Finally in the docs office and I start off with his “fellow”. This is a young man that I swear to you could have been my son-in-law Charles. He had different hair, but he was tall, skinny, sounded like Charles and had Charles’ eyes. It was like Charles was there. I found that very comforting. Then the surgeon came in and visited some more and answered more questions. The doc told me that if I were younger, his recommendation would be surgery. If I were 10 years older, his recommendation would be the gamma knife. Because I am the awesome age of 54. I can do either. So much for a recommendation.

So again, a big decision to make and I have to weigh the pros and cons of each.

  • Gamma Knife:
     Pro: It is outpatient, pretty much painless and I go on about my life the next day. I like the sound of that. Con: It doesn’t get rid of my tumor, just zaps it. I would also continue to lose my hearing in that ear as the tumor is still there mashing on my hearing nerve. I would have to have an MRI annually for the rest of my life to monitor it. There is no data out there beyond 15 years on its success rate of keeping it from growing back and growing back cancerous. YIKES.
  • Surgery Let’s start with the cons here: It’s brain surgery and they have to cut open my head. I will have some discomfort for 7-10 days with the incision. I may have some dizziness or balance problems for a few days. I would have to spend 3-5 days in the hospital and miss 4-6 weeks of work. Jeez. Pro: The tumor is removed and I don’t have to worry about it anymore. I may be able to salvage the remainder of my hearing in that ear and the ringing in my ear has a 50% chance of going away. I would REALLY love that.

It’s times like these when you just have to put your big girl panties on. While I am scared to death of the surgery and the days after, I am even more scared of the thought that when I’m 70, it could grow back and it could grow back cancerous. Do I really want to deal with brain cancer at 70? Maybe medical technology will have come a long way by then and it wouldn’t be any big deal. But do I really want to risk it. These are the thoughts that have just been churning away in my mind…. What to do, what to do. Keith and I have talked and talked and talked about it. He even told me he knew what he would do if it were him, but wouldn’t tell me so as not to influence my decision, because it is after all MY DECISION. Maybe I don’t want it to be my decision. I really would like someone to just say, “THIS is what you MUST do. Alas, that isn’t going to happen.

So I have decided surgery. I indeed have put my big girl panties on and tomorrow I’m emailing Houston with my decision. My husband, daughter and son are also going to have to their big boy britches and big girl panties on. It is going to be a stressful and draining experience for us all. I am hoping to be able to do it the first week of December.  That’s the plan Stan.  I just have to keep my chin up and my nerves at bay. For all of you out there that are praying for me, thank you and keep it up. This Episcopal gal accepts prayers from all religious denominations.

Yes, I can do this. Hey, I survived natural childbirth, I can do anything right. Oh and FYI: After I told Keith my decision, he said that is what he would do to.