Tag Archives: survival

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.

 

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.

The Many Faces of Bravery

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Fog at DuskBravery comes in many different flavors, colors and layers. In recent weeks, I have come to reflect on and recognize some specific things that I consider acts of bravery.

When I was in Houston four weeks ago for my surgery, I was pretty focused on myself and just getting it done and getting home. The last day we were there, I got to go to the MD Anderson beauty shop and have my hair washed and dried. As Keith and I worked our way down to the beauty shop, we passed lots of people in various stages of cancer treatment. When we got to the waiting room, I was about 6th down the list so I waited and watched ladies come and go to get something done with their hair too. As we were leaving I looked into Keith’s eyes and said, “I hope I don’t ever get cancer, I don’t think I’m tough enough to go through the treatment. I have only been here five days and I’m sick of feeling bad.” Forgetting momentarily that HE went through a very difficult treatment himself, he responded with, “You do what you have to do.” That took me right back to five years ago when I was the caregiver and he was the patient. I remember how hard I thought it was for him, but I understand now that I really had no comprehension for how difficult it was. My husband will continue to be one of the bravest people I know for enduring that treatment and coming out on the other side healthy, happy and still in love with me. I am honored to be his wife each and every day.

We have all known people who are battling or have battled some major disease. Some of these people we love made it and some did not.  Let me tell you about three of my favorite ladies who did not make it but they are never very far from my mind and each very brave.

In 1996 I took the job I have now as the administrative assistant for the superintendent of schools for my local school district. It is the school district that I attended all 12 years and the school district that my children also graduated from. I am a proud Ardmore Tiger. I had never worked for a school system before. I had worked for the federal government, a newspaper, a retailer and an oil company. But if you have good skills as a secretary, you can be an asset anywhere. Across the hall from me was a woman by the name of Brenda Rickard. Tall, beautiful, bubbly, smart and my new friend. She was the person that did public relations for my school district. I really didn’t know what that meant, but that’s was she did. In 1999 we got a new superintendent and things got shook up around the office and Brenda eventually became the assistant superintendent. Her office was now right next to mine. We could now talk every day and I could learn from her. Her position as PR person was not filled so she started teaching me what she knew about school PR. Brenda thought I would be great at helping in this area and I quickly grew to love it. Of course my main job was still the superintendent’s administrative assistant so there wasn’t a lot of time to spend on PR, but it was never far from my mind. I had the privilege of working with Brenda for several years before she took a superintendent’s job in Texas. I can still remember the day she called me and told me she had breast cancer. I felt an absolute terror run through me and cried all the way home in the car. She fought very bravely for years, but lost her battle a few short years ago. Today I fight even harder to get good information about my school district out to the public. I am passionate about it and it is completely because of a wonderful woman. Thank you Brenda. You are still mentoring me today.

In 1981 I met a woman that would become my mother in law, Diane Swim. We became fast friends and I loved her dearly.   She was only 14 years older than me so even though she was technically my mother in law, she really felt like an older sister. We would talk about all kinds of things and there were some things that she shared with me that her own son did not even know. I felt honored that she loved me enough to trust me with that information.

She was very talented and creative. When I met her she was into ceramics and she created some of the most beautiful ceramic pieces I had ever seen, some I still have today. Whatever the holiday was, she had something decorative for it. We also loved to go antique shopping together. She could take old pieces of anything and make it awesome. I credit her for my ability to decorate my own house, because she taught me how. In my twenties I would sit in her kitchen and watch her cook big family meals. She had it down to a science and was cleaning the kitchen as she went. By the time you were ready to eat, the kitchen did not look like a bomb had gone off. Years later I have noticed that I do the same thing. Christmas was her favorite holiday and every room in her house was decorated. I remember the year she had a big tree in the living room and another tree in her dining room. How fun I thought. She would have us all over to make Christmas cookies. I had never done that before and it quickly became a tradition in the family, which her daughter continues to this day. I cannot get through any Christmas without thinking about her. Ten years after we met, I divorced her son, but I did not divorce her. We continued to remain friends and confidants for years. Diane too was diagnosed with cancer and she battled it quietly and bravely for years. We all had to say goodbye to her just four short years ago. Thank you Diane for being my friend and loving me. You taught me so many things over the years and you will always be a light in my soul.

How do I even begin to tell you about my mom, Margarett Haralson? There’s not enough space on the Internet or paper on the earth to tell you everything. My mom taught me many things very quietly. As a child, I idolized my dad. He could absolutely do no wrong. I was probably quite a bit like him. After I became a wife and mother, I began to notice a shift. I was becoming more like my mother and that was not a bad thing. She was patient and kind. I cannot recall her ever speaking ill will towards anyone, a trait I’m still working on. Unconditional love, that was my mom and now that I’m a mom, I understand. You may not always like what your children are doing, but you always love them. I know there were times in my life when she did not like what I was doing and thought I had lost my mind, which I probably had. She never made any judgments, but was always there in support whenever I needed it.

In 1994 she was diagnosed with Parkinson’s. My mom was real good at hiding just how bad she felt. She was on various medications for her Parkinson’s but the medication never lasted long enough. She continued working until around 2002 when she just finally had to give it up. We began to discover that we had to plan events around her medication when she would have her “on” periods and the “on” periods got shorter and shorter. She was on all the medication she could be on and nothing really seemed to work for very long. But again, she was great at hiding it.

In 2007 her neurologist suggested she see a surgeon in Dallas about having surgery to implant a stimulator to help control her Parkinson’s. So here’s my 77 year old mother contemplating brain stimulator surgery!   My dad kept talking to her about having the surgery as if it would cure her. I kept having to remind him that the surgery would not cure anything, but the hope was that it would make her quality of life better. I’m not sure my dad ever understood that. Mom decided to have the surgery so on February 14, 2007 we went to Dallas and she had surgery. I would love to tell you that it made a huge difference for the better, but alas it really didn’t. In fact, it created new problems and the last two and a half years of her life were very difficult for her and my dad. It just broke my heart. In August of 2009 she took her last breath and heaven got one more angel.

So here I was four short weeks ago getting ready to have brain surgery when my thoughts drifted back to my mom. She had brain surgery at 77 years old. How brave was that? If she could do it surely I could do it. As we were walking to the surgery center that morning, that was my mantra. Holding my hand for that long walk was my survivor husband and whispering to me softly was my mom saying, “You can do this.” Thank you mom for not only being my perfect mom here on earth, but also encouraging me from beyond all understanding. It is always my hope that you would be proud of me today and that my actions help to keep your memory alive.

Bravery indeed and three very special women who continue to shape my life. Three lights may have gone out on earth, but heaven is an even more special place.   When we see each other again, we will have lots to talk about.

Peace be with you.

 

 

 

 

 

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.