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Moving towards those golden years

I love the line in the movie Forrest Gump that says. Life is like a box of chocolates, you never know what you are going to get. Sitting here at the Hollingsworth Cancer Center and waiting on Katy tells me that our chocolate for today is a bit bittersweet. As Katy walks through the process of trying to beat this thing called cancer we both have hope. We have hope that the chom treatments will heal her or at very least slow down any forward progress it might try to make in her body. We fully realize that despite our best efforts and those of medical technology there are no garuntees. I have heard of people who have gone through chemo and radiation and went into remission for many years. I have also hear of people who went into remission to have the cancer come back with a vengenace and they lost the battle.

Katy and I heard of a family friend who lost her battle with cancer this month. Peggy had stage four breast cancer and it spread to her lungs. Katy was able to do a video chat with Peggy back on the 2nd of February and they had reconnected back on 2016 after several years of no communications. That reminds me of the fact that it is very important that we stay connected to our loved ones. Even if the people are family members and we are not that close or maybe they are not our most favorite person. Life is precious and it does not last forever.

Making memories means that we have to move outside of ourselves and share our lives with others. Our future legacy depends on our doing that. As I get older I find myself appreciating peace and quiet and staying to myself. Large crowds of people with lots of noise and activity is not my cup of tea any more. I want to slow down and appreciate life on my own terms.

Over the last couple of years I have been fighting the obesity monster and along with that high blood pressure. As time has progressed it has become increasingly difficult for me to get exercise and I have struggled with eating better. Education is the key and having the motivation to get off my butt and move away from the computer chair is very important to weight loss. I know what to do but have struggled with implementing those changes in my life. I will be going to a cardiologist today so that they can scold me for being so obese and tell me what I already know. Hopefully they can help me manage my blood pressure levels and I can get back to the gym even if it is in small doses. Something has to be better than nothing. I am determined to not give up or give in. I have a lot to live for and I want Katy and I to enjoy our golden years for several years to come.

Wait just a moment…. When ARE the golden years? Maybe we are just looking down the road and see it right on the horizon? We are both in our mid and upper 50’s so maybe we are just middle aged? Only time will tell.

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living in the moment

So, the year 2016 sucked in ways we would have never dreamed of. Who knew that Katy would have to have five surgeries and endure two different rehabs? Three of the surgeries were for a brain tumor and then the discovery of ovarian cancer.

Starting in March of 2016 Katy’s balance got worse and worse and that led to her getting an MRI and discovering that the tumor they had found in 2010 had gotten bigger and required surgery. Fast forward to 2017 and the surgeries are over, rehab is done and Katy is now 70 lbs lighter. Now Katy is facing chemotherapy thanks to the doctors finding a tumor on her right ovary. The tumor is gone, the historectomy has happened and now there are 3 chemo treatments to be had. Two are done and we have one left to go. By the 30th of January 2017 Katy will have had her last chemo treatment. The doctors feel confident that the cancer is gone and she has nothing more to worry about.

In 2015 we started the long and painful process of applying for Social Security Disability benefits. Katy was not able to work and so we engaged in the mountains of paperwork in hopes of Katy getting disability benefits started. When Katy was no longer able to work and bring funds into the household budget it threw our finances into a tailspin. We survived somehow but it certainly was not fun. We had to learn how to do without a lot of things that we had gotten accustomed to. At the end of September of 2016 Katy was approved for her disability benefits. She received a back payment check which was nice and enabled us to get caught up on our bills and do a couple of other things for each other.

Katy has decided that even if she does get to the point where she can work again she will not be going back to being a special education teacher. Doing that sort of thing is just way too stressful on her now. Katy loves working with ED kids but the severe and moderate kids as well as the baggage that their parents bring to the table is just too much for her to handle.

For now, we are enjoying the fact that Katy has endured the surgeries, rehab and is on the road to recovery. There for a while I was wondering if she was going to make it through 2016 and make it into the new year. We had several scares with the surgeries but we are thankful that she made it through ok.

We have been blessed to have our friends and family members who have supported us the best they could. Our church family was very supportive through it all. I am not sure if we could have done it without the love and support they showed us.

When your loved one goes through something like this you are reminded of your mortality. You are reminded of how precious each moment of life really is. You are reminded of what is important and those things that are really not that important. When you have your health and faith you have everything. Money is important and we do love to have our stuff but when it comes down to it those things are very temporal and insignificant.

Living in the moment is something that we both have to learn how to do. Slowing down and appreciating life more. Focusing on what is important and giving up worrying about those things we have no control over. We cannot cling to those things of the past and we have little to no control over what happens in the future. We have to trust in God to take care of those details. We have faith that God is more than capable of bringing us through the storms of life. We look forward to what the future holds for us.

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Hell has frozen over

Yes, that is right. You read that correctly. It is 29 F in Charleston South Carolina and I can see ice outside of my front door. Hell has certainly frozen over. In the upstate of South Carolina and other geographical locations west and northwest of our location have seen snow. That is ok, we can enjoy this brief winter wonderland today because in less than 7 days it will be 70 degrees again and everything will thaw out. That is what it means to live in the south. If you do not like the weather today, just be patient, it is sure to change and get warmer. How cold is it where you live and what do you do to celebrate it? If you are like us you just throw another log on the fire and wrap up in a blanket and get a cup of coffee and wait it out.

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Merry Christmas

Christmas is almost upon us once again. It seems as if we just finished celebrating it not too long ago. 2016 really zoomed past my family and I and we are hoping for a much better year in 2017. I hope that each of you have a very merry Christmas and a happy and prosperous New year in 2017. Please reach out to friends and family and share the love and Christmas spirit with them. Lets remember that this time of year is tough on a lot of people who have lost loved ones or may be going through a personal struggle of their own.

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Surgery Update Monday August 15th

Katy was taken to surgery around 12:15 pm and was there until around 6:15 pm. The surgery was supposed to last 90 minues but they took their time and did some extra work that they had not anticipated.

Katy is in recovery and will be going to 9 east. They had to remove the ear canal tube that runs between the ear and the back of her nose. The ENT surgeon said it was at a weird angle for some reason and that contributed to the leak.

Katy had no hopes for the hearing in that ear to ever return, so that is why they did it. ENT surgeon said that Katy’s continued leak occurs in less than 5 % of patients. They will keep her for a few days to make sure the leak is stopped and the headaches are gone.

In other news, the ENT surgeon said that he heard the pathology report shows low grade for cancer. At very least she will have to have her female organs removed. The ENT surgeon did not want to speculate about chemotherapy. He is going to give the GI doctors my cell phone number but they may or may not call me.

I am hopeful that Katy will come back home by Thursday or Friday and her headaches will be gone.

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Exploding water bottles

My day started out by runnng errands before going downtown to MUSC to visit with my wife at the hospital. I picked up a prescription at the Kmart pharmacy and then dropped off some books at the Charleston County Library. My next stop was the Sunoco gas station on University blvd. I love to get their freshly made breakfast sandwiches. The fountain drinks all tasted bad so I opted to go to the cooler and get a bottled drink instead. Once I arrived at the cooler I decided against the cherry coke and decided to get a bottle of water. I do not like the Nestle brand of water so I saw a Schepps Cherry water. How could I go wrong? Water with some cherry flavoring.

I purchased my items and off to the parking lot I went. I got settled in, put on my seat belt and then proceeded to open up my bottle of water for a drink. Much to my surprise the water bottle started to spew all over me and the inside of the car. I managed to crank down the bottle cap while spewing forth some verbal carnage of my own. Yes, that is how my day started out. I guess I am lucky that it was not a cherry coke because that could have been much messier to clean up. I had no idea that the bottle contents were carbonated and under pressure. I should know better than to open a bottle in the vehicle since this is not the first time ths has happened to me. Ok, so I am a slow learner.

I managed to make it to MUSC without any further mishaps. I used to park at the older garage across from the childrens hospital entrance but thanks to it being closed I now park at the Rutledge Tower garage which is much nicer and roomier to drive in. I park on the south tower side and walk across the 2nd floor connector which is air conditioned. There are signs that show the path I take as the wellness walk path so that is a good thing.

 

Katy has been in the hospital this time since Sunday July 31st. April of 2016 is when this brain tumor nightmare journey began. Since then she has had multiple surgeries to seal what appears to be a persistant cerebral spinal fluid leak. This last week they went in and installed a shunt that is supposed to help drain any excessive spinal fluid into a drain tube in her chest Last week they went in to put in the shunt and while looking around in her abdomen with a camera they found that she had a canteloupe sized tumor on her right ovary. Initially they thought her colon was dead but when they opened her up they realized they were looking at a tumor instead. Two weeks later the tumor is out and the shunt has been installed. Unfortunately the shunt has not stopped her nose from leaking cerebral spinal fluid and her headaches are still there. They are going to go back in tomorrow and try to fix the leak again. This will be the 3rd brain surgery so hopefully the 3rd time is the charm.

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Surgery 2016

For those of you that did not know. Katy had a brain tumor removed at the end of April. Then she had a 2nd surgery to plug a spinal fluid leak. Now she is back in the hospital to have a shunt installed. They found a cantaloupe sized tumor on her right ovary. Waiting on pathology report to come back, hoping it is negative for cancer.They are going to put the shunt in sometime in the next 3 to 4 days. Katy is in constant pain in her head and at the incision site where they pulled the ovarian tumor out. On top of all of that I now need a car. Katy is in MUSC room 919 on 9 East. Please say a prayer for her. 

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Surgery #2 May 2016

On May 12th Katy got out of HealthSouth just in time for us to celebrate 26 years of marriage.  Starting on Monday May 16th Katy started losing control of her right leg and was no longer able to stand and use her cane or walker to go to the restroom on her own.  It became a major effort to get her off the couch and move from point A to point B.  On Wednesday evening I helped her to go upstairs to take a shower and she fell in the tub because her right leg just would not lift over the edge of the tub.  I wound up having to call 911 to get some stronger backs than mine to help her out.  On Thursday we spoke to the home health RN that came by for a visit and she in turn called the Neurosurgeons office who decided to have me bring Katy to MUSC ER department where she was admitted. 

 

A catscan revealed Katy has air on her brain which meant that she is leaking spinal fluid.  The air was expanding and causing issues such as headaches and pushing against other control areas of her brain. The doctor seems to think that once the hole is plugged and the air dissapates that her mobility will return to normal.  Katy went into surgery around 1:30 pm today and it will last approximately 3 hours.  They will keep her in recovery and possibly ICU for one day to allow the air to get out of her brain and the fluid to return.  Then she will spend 3 or 4 days at the hospital in her regular room. 

I am very thankful to my new found angels by the names of Kim and Katie who have been a huge help with my Katy this week while I am at work.  Both of them helped her with daily routine stuff and they have been keeping an eye on Willow while I am at the hospital.  A huge heartfelt thanks goes out to my neighbors who have selflessly given of their time and energy to support another neighbor.  Can you imagine how awesome this world would be if everyone would take the time to do this?  People caring for people because it is the right thing to do. 

 

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Random Ramblings

Katy has been home from HealthSouth for 4 days now.  It sure is good to have her home.  Willow sleeps on the couch next to her while she sleeps in her recliner.  The couch has two recliners built into it and she is having to sleep in that until we can get a portable AC unit upstairs for the bedroom.  So, for now, we snore together downstairs in our respective recliners. 

So far this week home health has sent an RN to do a patient assessment and the PT person came by to do one as well.  I think that Katy will get a visit two or three times per week for a while.  I am sure Cigna will see to it that those visits end sooner than later.  We still have to come up with 2300.00 to pay up our 5k family deductible for 2016.  Once we do that Cigna will pay 100% for everything that is left minus what they refuse to pay for.  The hospital bill estimation before the surgery came to 71,000.00 so I am sure we will get an updated bill soon.  That does not count the bill for the surgeons and other doctors who were on her healthcare team while she was at MUSC for a week. 

Justin came by to visit his mother at HealthSouth while she as there and Katy received several get well cards and flowers for her room.  Several church members came by to visit including the pastor which really made her day.  One of the church members brought Katy 3 paintings that are now hanging in the bedroom.  They are very colorful and cheerful looking.

The next step for Katy is for her to regain some of her strength.  Katy spends a lot of time in her recliner dozing for now and watching TV and using her iPad to surf facebook so she can chat with her friends and family.  On Monday she will be calling her case worker to see about getting the wheelchair delivered so she can go to church and other places. 

Katy and I both appreciate the outpouring of love and generosity through her Gofundme page. 

 

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Challenges in 2016

We are 3.5 months into the new year and there has not been any lack of challenging events.

The biggest challenge has been to convince our insurance carrier, Cigna, to authorize an MRI for my wife Katy.  In 2011 Katy was diagnosed with a brain tumor after discovering that the hearing in her right ear was greatly diminished.  Fast forward to 2015 and 2016 and Katy has a hard time with her balance to the point she has been falling a lot.  Katy went to see an ENT the other day and he agrees that there needs to be a new MRI done to see if the tumor has grown which he thinks it has.  Cigna is not authorizing the MRI because they do not see any clinical evidence for her to have the exam.  There is no clinical evidence because the doctors at MUSC are not entering the proper notes for her medical records. 

Our next challenge has been to reduce our living expenses down to the bare minimum.  We were fortunate enough to reduce our rent 50% and that has certainly helped.  Our car payment is higher than I would like for it to be but thanks to less than stellar credit it is what it is.  We are being forced to ditch our cable provider and do without cable TV.  I believe that I could do without cable TV for much longer than I could do without Internet connectivity.  Luckily for us I have a MiFi that allows us to connect without depending on Comcast. 

Both of us are battling with our weight and the need to reduce it so we can increase our quality and longevity of life.  We want to be healthier so we can feel better physically and be able to get around better.  Katy has been fighting with a back issue that causes pain to shoot down her leg.  We got her a shot in 2015 and after insurance it cost us 800.00.  She needs to get another one but we just cant afford those prices.  That means that Katy cant work since she is unable to stand for any longer than 10 minutes at a time.

Along with Cigna we are fighting with the Social Security Administration as we try to get them to authorize Katy being on disability.  She was denied the first time in 2015 and now we have engaged with a law firm in Mt Pleasant that specializes in this sort of thing.  They told Katy that it typically takes about 20 months to get approved but that she could get denied several more times before she is approved. 

Despite our challenges we are still together.  We love one another and support one another in whatever ways we can.  God has blessed us with having our needs met.  We need to remember that needs are different than wants and that we cannot compare ourselves to others. 

Our son Justin is living downtown Charleston with his girlfriend and he is attending Trident Tech. At first he wanted to be a geologist but has now changed to wanting to be an RN.  Kristina landed somewhere in Louisiana and seems to be liking it there. 

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