Better than Good

When I was diagnosed with Coronary Artery Disease last April, a new saying came to define how I had to live my life. The charge was for me to be “better than good”. This was not necessarily a new concept for me, I have always been the type of person to go for it, not aim for mediocre, and always do what is necessary to exceed any expectations set in front of me. The idea that “better than good” was the new goal simply put a frame around the concept and specifically to focus on my health and living well. The idea was simple enough, you have heart disease, your numbers are good, your weight is good, your health is good, but you have to be better than good. At the hospital after the stent placement, I weighed 210 pounds, my cholesterol was a little high, but within normal range, blood pressure was around 130/90, but nothing incredibly out of the ordinary. The goal set before me was to lose about 15 pounds, aim to be somewhere around 195. I remember the first time they said this to me I thought there was no way that’s going to happen. I had been active, running regularly and eating what I considered to be well for at least two to three years, but I had weighed 205-210 the entire time. I had run 3 half marathons, a full marathon and trained for a 1/3 triathlon at that weight. This was just my build, I thought.

Heather had been dairy free because of milk allergies with each of the girls when they were born, and each time we went down the dairy free path, we did it together. We did the Forks over Knives diet, would focus on fruits and vegetables and most importantly we paid attention to what we ate. In my opinion we ate well before all this happened. Losing weight was never something that happened though, at least not in any significant amount. I just seemed to maintain the same build and fitness levels. I remember thinking there is no way I will be in the 190’s, its a good goal to have but I don’t know that is a very realistic thing to aim at.

The idea of going through cardiac rehab was a key for me to get started along a positive path towards change. I was excited about the possibility of being guided down this healthy path, and starting Cardiac Rehab, a 12 week course that would be the catalyst for my healthy lifestyle improvements. This rehab program focused on cardiac exercise, nutrition, stress relief, and emotional strength. The program was phenomenal and taught me more than I ever anticipated. In addition to the rehab, I adopted a focus on four elements, these being what I would call the key to my success and the key to Living Well.

Information, Inspiration, Hard work and Dedication. These four words became the cornerstones of my success. As soon as I returned home from the hospital I learned all I could about heart disease. I surrounded myself with Information. I wanted to know what caused this disease, what do people do to combat it, what can I do to get better, etc. I read probably 4 books within two to three weeks on the subject. I read medical books, inspirational books, science based books and most importantly I spent time learning that heart disease can be a preventable, curable, and potentially reversible condition that is affected by our lifestyle and diet. This was great news, because it was something that could be affected, so I set out about the path of being better than good. I had to learn about the disease, nutrition and exercise. I had to learn recipes that were good for you, what was not and how to tell the difference. I spent a lot of time learning.

I spent any free moment being Inspired. I would listen to podcasts on the way to and from work, to and from rehab, to and from the grocery. Any time I was in the car I was listening to stories about people winning. It didn’t matter what they were winning at, if they were inspiring, I wanted to hear their story. From Dave Ramsey, to Zig Ziglar, to watching movies or tv about people transforming their lives, I took any opportunity to learn about people succeeding and funneled that towards my own success. I would constantly surround myself with stories of success and would mentally note the threads common among them.

Success does not come without Hard work. It didn’t feel like hard work at the time, but looking back it was definitely work to change how we ate. It took effort to say no to snacks that were not healthy for us, it took effort to cook meals that were good for us, and it took effort to go through the rehab program. Heather was shouldered with the burden of watching the girls while I spent one hour each evening, three days a week for 12 weeks on the way home from work to get fit and go through the program. Not that she didn’t love doing this, because I truly believe she did. She is a great mother and is the rock of our family, but I do not overlook that there is a level of effort necessary to watch and raise a 1 and 3 year old every day while your husband is running on a treadmill. Her ability to work hard for us, allowed me to work hard for us in the program and together we achieved great success.

Lastly, the key was Dedication. Once this goal was set, there was no option for not succeeding, so no matter the amount of effort, this was something we were doing. I remember talking with Heather about if she was ok with the rehab plan and with all of the changes that would come our way. There was and is no doubt to her level of dedication to our family and to our future. She simply said this is what is best for our family and we will do it together, no questions asked, we are doing this. What an amazing woman! The other element of dedication is fighting through the challenges, because they were everywhere. Constantly tempted with “bad food”, skip that workout, you can catch up on that later, don’t worry about packing your lunch today, you can pick something up on the way. Dedication to the overall goal of being better than good is what kept us going when it would have been easy to slide back into the old patterns of our previous life.

So over the course of 5 months, from April 28, 2015 the day the stent was placed to September I lost a total of 35 pounds, I currently weigh 175 pounds…175! I passed the 190 mark in June and the rehab team was so supportive! Never would I have ever imagined that was a possibility. Once we met that goal, we set the next; let’s aim to be really healthy, not just healthy enough; and so we did, and so I am. My blood pressure, cholesterol, and all other cardiac indicators are in great shape, well below any range of risk. The key was simply eating right and exercise, nothing more, nothing less. There was no special diet plan, no meal plan,  no exercise regimen that is officially licensed and on sale anywhere. I simply ate fresh fruits, vegetables, nuts, beans, limited meats to fish (mostly salmon) and occasionally chicken, and exercised regularly. I would run three times a week for about 30-45 minutes at a time. When I was hungry I would eat, when I was energized I would exercise. The key in my opinion was what I was eating and portion control. We stopped using the big plates in the cabinet and did our best to keep portions into their recommended serving sizes. We reduced/eliminated sugars, cheeses, most dairy and processed foods, focusing only on “real food”. I don’t want to minimize the impact of this change in our lives, but it truly was as simple as that. We did not simply stick to the cardiac, low sodium regimen, we instead dove head first into the healthy eating category regardless of marketing label plastered on a package. It wasn’t an overnight transition, and it took a great amount of effort, but over time it worked and the weight has stayed off too. I wasn’t worried about the yo-yo affect of a diet, because I wasn’t on a diet, we simply had changed our lifestyle. We decided that it was time to be better than good, so along with some information, inspiration, hard work and dedication we are a much healthier family. I cannot help but believe that had I not gone through that journey last year, this current battle with cancer would not be as optimistic as it currently is.

Today, I find myself gearing up for this new battle, again gathering information and inspiration, preparing to do the hard work of radiation and chemotherapy treatment and focusing on the dedication towards the goal of our bright future together!

 

 

The Diagnosis

Yesterday, we ventured out of the house for the first time since being discharged from the hospital. We had two appointments to get to, one to see a Medical Oncologist and another to see a Radiologist. These two, in addition to my Neurosurgeon are making up my current treatment team to battle the next stages of this journey I’m on. I know it’s hard to believe, but I have been ok with the news that I have cancer; the word in and of itself does not scare me nor will I allow it to have any power over my attitude. As I have thought to myself and said to many of you, there is nothing that could have been done about this, this is what I have been dealt, the only thing I can control is how I react to it, and that is where my focus will remain. When you get the news of a brain tumor there is so much that you can think about if you let your mind go, but my focus up to this point has been to simply overcome the news of having a brain tumor, preparing like crazy for surgery, and recovering from surgery so that we can get about the business of going on this journey and getting back to real life again, or at least developing a new version of real life (the most likely result to anticipate).

The concept that what has happened to me has been a blessing is something that’s a little tough to wrestle with, because of course you would never want to actually go through this if you had the choice, but honestly, all things considered I have so much to be thankful for. We were able to find the tumor in an amount of time that did not create large neurological deficits; surgery went better than expected, the tumor was removed; and I am recovering well, at least in my opinion. I am able to walk, talk, think, laugh, smile and enjoy time with friends and family. I am weak from surgery, but strong in spirit. I know that my current condition, prognosis and diagnosis is not always the norm for people that deal with this ugly disease, and it doesn’t escape me for a minute to be thankful for the health and happiness I am able to so blessedly enjoy. So in spite of all that could go wrong, I am confidently focused on all that is going right and celebrating each day as the gift it is to our family!

The official diagnosis is an adult medulloblastoma. This is a cancer that rarely occurs in adults. It is a tumor that originated in the brain and sometimes the cells spread and tumors can be found in other areas of the brain, spinal column or in the cerebral spinal fluid. So far, all other MRI’s, CT’s and tests have shown no signs of other tumors in any other areas, only the one tumor that has since been removed. Again, all information we have received has been as best-case scenario as we could hope for. Medulloblastomas are the most common type of brain tumor found in children, and the treatment for it in children is widely studied and well understood, but according to doctors, these simply do not develop in adults at a frequency that allows for a large clinical knowledgebase to follow. Because of this, the treatment plan often resembles that of children, where the knowledge and understanding exists. The basic plan is to perform radiation therapy and possibly/probably chemotherapy depending on what risk factor and grade I end up falling into. I will be getting an assessment of my cerebral spinal fluid which will indicate how widespread or not the cancer cells could be in the system, which will largely drive how much treatment is required. The best things I have going for me at this point is the amount of the tumor that has been removed and the clean scans I have had. Either way, no matter in which direction the treatment plan becomes finalized, I am ready to tackle the next round of this boxing match.

The radiologist was great yesterday, he spent a lot of time with Heather and I discussing the treatment plan, and more than anything his positive outlook and optimism for the situation was a breath of fresh air at my first visit to a Comprehensive Cancer Center. He said my story is so interesting, a saying I have actually warmed up to, and in an odd way, have come to welcome now to some degree. He said the idea that at 30 years old, you found and fixed a 91% blocked Left Anterior Descending Artery before something catastrophic happened and then at 31 that you found and had removed an adult medulloblastoma is like lighting striking twice. The odds of either of these happening to one person at my age is so small, the odds that both occurred to the same person within a year is simply remarkable. This is another indication of the truth that we cannot control our destiny, we cannot determine where lightning will strike, our only ability is to control our attitude with which we face our particular situation. I continue to be strengthened by the support and prayer of our family, friends and community. I continue to heal stronger each day, I remain confident that we will beat this. I continue to walk down this path on an adventure in Grace!

5 am Hadley Time!

imageOur youngest, Hadley was up at 5am today! Normally, these early mornings are not very welcome in our house, but today was different. She woke up the same way any other 18 month old wakes up at 5am, cranky and yelling. Feeling like I had a renewed sense of purpose, having myself just slept at least 4 hours in a row for the first time in about two weeks, I thought maybe I could handle this little incident. I could try and help out the rest of our family who has been taking care of the two girls every need while I’ve been unable to. I had my plan together, I thought I would sneak into her room and give her a paci, rub her back if need be and she’d fall right back to sleep, the rest of the family none-the-wiser and all the more rested. Needless to say, that particular vision did not become a reality for us today. I am not able to lift the girls up yet, and obviously that’s all she wanted me to do when she saw me, so instead of a peaceful moment we got a little more noise. Heather was quick to assist, as she always is ready to pounce into Mommy mode, and together we were all up at 5am enjoying our morning. Hadley was able to cuddle with me for about 10 minutes in the rocking chair while she rocked in an out of being awake and asleep, we read a book together and counted lady bugs in her counting book. It truly was a great moment of gaining strength for the day (we met with the Oncology team today, which I will post about later).  Iimage really enjoyed today spending time in quiet with her. Then we sat together eating breakfast and enjoyed a fruity snack. Thanks to the Kettering Parks Team for sending the fruit basket! Hadley loved it and this gift made it a great morning for our family!

Today is a New Day

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Sometimes people speak into your life in a paragraph, sometimes it only takes a sentence. Thursday, January 28 it took only those 5 sweet words: TODAY IS A NEW DAY!

The day prior, I was scheduled to undergo brain surgery on a tumor that was discovered on my 31st birthday, January 17, 2016. The CT scan that had revealed the tumor showed a mass in my left cerebellum approximately 4.0 cm x 3.7 cm x 3.1 cm, which in terms of tumors, is large, I’m told. An MRI was done to confirm the level of swelling around the tumor and hopefully be used to identify what type of tumor we were dealing with. All scans seemed to indicate the tumor was a hemangioblastoma, a typically benign (non-cancerous) tumor that is vascular in nature. The neurosurgeon referred to this as the type of tumor that if you look at it wrong, it bleeds. Because of my heart health and being on blood thinners, this type of tumor was particularly distressing to the surgeon, as bleeding in the brain is a bad thing. So the plan for surgery was simple, we don’t know what it is, so we need to find out. The best way to do that is to start with a biopsy. We take a piece of it, evaluate it, and if it is a hemangioblastoma we stop and close up the wound. If it’s anything other than a hemangioblastoma we see what we can get based on how it looks. If its the hemangio, we would then schedule an angiogram of the brain which would allow us to see where the tumor was being fed from, in terms of blood vessels, and then we could plan a second surgery to remove the tumor and would know in what order to attack the feeder vessels. It was clear this had the potential to be the first of multiple surgeries, it was clear there were intense risks in play, and it was clear that I was in good hands with a knowledgeable surgical team, doctor and staff. I was comfortable with the plan, it met every logical test I could come up with. I had confidence that the outcome would be positive. I had prayed, prepared, planned and was surrounded in support by literally an entire community of family, friends, coworkers, and strangers. Its true though, that despite whatever confidence or calm I had, the plan still had a large amount of unknown remaining in it. The goal was simply to gather information and that had to be enough, we would let go and let God.

After the surgery, as I was recovering from the sedation, I was told I would go for post-op MRI scans of the head, neck, and spine. The tests would be done overnight and would be read by 6am. Dr. Pollack had other surgeries that day, so she was unable to come and give me any preliminary results. Heather and my family were aware of some information, but I couldn’t get a good read how positive or not the results were from them, most of the focus was simply on my being comfortable. Around 8pm I asked Heather to let me know what happened, she indicated that it probably was not the hemangioblastoma, and that she went in and removed more than she expected, but that the surgery took 6.5 hours, which was about 3 hours longer than originally anticipated. We simply were in the position again that we didn’t know what we would be facing. The night was truthfully very rough from there on out, there was a lot of pain, I had never been through any major surgery before and I wasn’t sure how my body would react to the pain. On top of that, I was not allowing myself to relax enough to heal. I would continuously try to think my way through the pain instead of let the body recover.  Around 3am, I was taken to MRI for the scans, and I repeated the mantra that had been my source of strength throughout this entire process. “This is what you need to do for your girls, you be strong, you can do this, they are worth it. This is what you need to do for your girls, you be strong, you can do this, they are worth it.” And so with that warrior cry repeating in my head, calming and relaxing breaths echoing through my lungs and a deep concentration on maintaining a calm heartbeat I made it through the tests with a renewed sense of confidence in what was to come.

The next morning, when Dr. Pollack and her team entered the room, she looked at us, it was Heather and I, the core of our family,  waking up from the long first night after surgery, a large smile on her face, Dr. Pollack simply exclaimed, “it’s all gone”. The only thing I can remember mustering was, “are you serious?”. She said, yep, all gone. In surgery, she had received the initial pathology reports that showed it was not the hemangioblastoma and that it was a cancerous tumor and appeared very cystic, in her words, “I knew this was my shot at it, so I went back in slowly went for it”. She asked if I wanted to see it, I said absolutely, we looked at the scans from the pre and post-op MRI, and sure enough, the tumor was removed. We discussed how this was not the intended outcome of the surgery, but based on the initial results of the pathology and the position, her access to it and everything that makes her a great neurosurgeon, she was able to go for it and removed it all. You could tell she was as genuine about these results as Heather and I were. You cannot fake the care and concern for patients lives in the way she was reacting to this news with us. Not in a way that made her seem any less of a great doctor, but she was reacting in the way that makes her seem more like a great person. She was even so gracious as to say I did amazing yesterday, as if that would play any role in the outcome, but she insisted I did well and because of that “TODAY IS A NEW DAY”.

It was in this life changing series of events, that we again learned about the Grace of God. It was in this simple and life altering way, the words of Dr. Fromke, the 3on-call neurosurgeon we had met a week before when discovering the tumor, told us that God’s Grace was Enough and God’s Grace was Sufficient had come to fruition. The plan and desired outcome of surgery were not what we had anticipated, but God’s plans were made perfect because God’s Grace was Enough, God’s Grace was Sufficient and now, TODAY IS A NEW DAY!

Gymnastics Day

Today was gymnastics day! A Tuesday tradition that allows Avery to get out and exercise a little. I think today was especially important for her because it was the first time she was able to get back to normal, if even for a little bit. She was so excited to come home from school and change into her leotard, Daddy even got to help her get ready. She has really seem to become engaged in this process of letting me help her and knowing that its a little slower than my helping her was before. A few weeks ago, she would have never expressed the patience she did letting me help her get dressed slowly enough that I did not feel like I was overdoing it.

I am hopeful that allowing Heather to take her to gymnastics was a welcome break to reality again as well. One of the hardest parts of this journey so far has been to see the impact it has had on everyone emotionally and physically. People have by far gone above and beyond to do what needs done, but there is no understating how refreshing it is to see normalcy return, even in the smallest doses.

In addition to Avery getting to get her gymnastics on, she was able to come home with a renewed sense of play. She instantly wanted to show me how she can do her handstands and big kicks. And let me tell you, this girl is LEGIT! Toes pointed, arms up, both feet extended and tucked into the finish, she loves to tumble and it comes naturally to her. It is great to see her so happy! Tommorrow is Webby Dance day at school, another great day to look forward to in the Adventures of Avery and Hadley!

Power of Prayer

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Its hard to start this post with anything other than a huge Praise God! Surgery went well Wednesday, the 6.5 hour procedure removed ALL of the tumor, confirmed by MRI yesterday! This is a great result, better than we could have ever hoped or dreamed!

This does confirm though that this surgery is simply the first step along a long journey ahead! We are probably a week away from knowing what we’redealing with and what our approach will be. But that’s ok right now, the focus is on recovering from surgery and celebrating this fantastic news that the tumor was removed! The care I have received has been top notch! The doctors, nurses, techs, managers and everyone we have encountered have gone above and beyond to make us comfortable! I’m feeling as well as could be expected after the extensive surgery and am positive about what’s ahead. I will be taken for more testing over the next few days while I heal and are awaiting final pathology reports until we can confirm what the future battle will entail. Regardless of what’s ahead, we take this journey one step at a time in confidence that with God we are strong!

My faith is unwavering and the support of family friends and Heather Geglein Davis drive me to be better each and every moment. For now we ask for continued prayers, healing and hope! We will be strong! We will beat this! I am confident in Gods plan for this journey!

Now is right on time

Tomorrow’s the big day, surgery day! We just left the hospital after a morning of pre-tests, blood work and a brain mapping MRI. The plan is to get a biopsy of the tumor and go from there, which could mean removal of some, all or none of the tumor. It could mean closing up and scheduling follow up tests and additional surgeries. Either way, this is a good path to gaining the information we need toknow what we’re facing and that’s something I think we’re all excited to get!

It’s easy to try and think of all the bad that could happen, and be angry about having to go through this, but honestly I’m not looking at it like that at all. I know I can do this! I know I can beat this, whatever this is! I’ve been thinking more about just how fortunate I am to be dealing with this in the way that I have. I am forever grateful for the support you have shown my family!

Because of having survived the unexpected event at 30 years old of having a cardiac stent placed in April, and transforming my life through cardiac rehab, diet and exercise I’ve seen the possibilities of recovery. This prior condition allowed me to have been able to delay the surgery while weaning off blood thinners, which has given me valuable and precious time at home with Heather Geglein Davis, Avery, Hadley, family and friends! I’ve had time to process this as much as possible, time to pray, time to hope, and time to dream!

I know things happen that we cannot predict, control or change. Sometimes things just happen, and the reason they happen is not nearly as important as how you react to them! To me, this is just one more chapter in my journey I have the privilege of writing. I am excited to start this journey, confident that I am as prepared as I can be, surrounded in support of gracious, selfless and caring family, friends, and coworkers, knowing that I am facing this situation for a reason and excited to celebrate my overcoming this battle very soon!2

God’s Grace is Enough

It’s been five days since we’ve gotten the news of having this brain tumor, surgery is scheduled for next Wednesday, so no news or updates, there remain many unanswered questions and unknowns, but I simply wanted to share a huge thank you to all of you, our family, friends, colleagues, and everyone else who has been so extremely supportive through the past few days. I really questioned whether or not to post about this subject because I typically do not subscribe to the tell the world mentality of Facebook, but I’d be lying if I said it hasn’t been incredibly rejuvenating to see the response it had. I am encouraged by all the love, support and prayers being sent for us. It means more than I can express to hear supportive words, prayers and thoughts from so many. I know that I will be ok and it’s so reassuring to know all the people rooting for our little family! Maybe the proper term is WE will get through this!

When we were first transferred to the Nuero ICU Sunday, the first doctor we saw told us a little about what we may face, but then he looked at Heather and I and told us that God’s grace is strong enough and it is sufficient. This single sentence he said to a couple of strangers was very impactful and has continued to stand out to me as the battle cry for this journey I’m on.

For now I’m still resting and preparing, praying, and enjoying time with family and the love of my life Heather Geglein Davis as she continues to be the brightest part of my world, strong and loving through this difficult time.3

A new kind of strength

So I normally do not post on Facebook and truthfully rarely get on, but I thought this may be a good way to share news and updates on my status to all our family and friends. For the second time in less than a year, I am in for the fight of my life. Last April I had a 99% blocked coronary artery, Sunday I went to the ER with persistent headaches and through CT scan, doctors found a brain tumor. Many tests followed as did three days of tears, fear, and thoughts about the unknown. Heather Geglein Davis has been my rock through this all and special thanks to Lois Missall and Heathers’ parents for keeping an eye on our girls while we were at the hospital formulating any resemblance of a plan. I am home now resting and preparing for brain surgery next week to investigate/biopsy/remove the tumor. I’ll be fine in the end, I just have to take this one step at a time! I would appreciate any and all prayers not only for myself but for Heather and the girls. I have a great support system and am confident I’ll beat this. We don’t know what this is, what caused it, what the long term prognosis is, but we have a good plan to find out more about this monster and eventually removing it from my head. I’ll do my best to update everyone as I am able. Thanks in advance for your prayers and support!4