A New Chapter... or a New Book?

I have written this post three times, I have read it, reread it, and then deleted it. I have written it, sat on it, and then tonight I decided to pick up where I had left off and then ultimately completely re-write it. We have updated many of you as we have seen you in person, you have talked with our extended family or have sent us text messages. For those who we have not seen or talked to recently, we are doing great right now. 

When I started this blog in June, it began as a way for me to update a large amount of people in an efficient manner. It was a way for me to tell the story once, so that I would not have to repeat it 25 times. It quickly became a way to express my thoughts and feelings, and to share some very vulnerable experiences that our family had, or that we were going through. Throughout this process, it also became a way for me to cope. When I started this blog, I had no idea that it would have the amount of readership that it has had, I had no idea that I would see people around our community and they would ask me why I hadn't updated the blog and I had no idea that others would forward this blog to individuals who were going through the same exact situation as us. We have had strangers reach out to us, to tell us about their brain tumor diagnosis, I have been invited to Facebook groups of small groups of people who are the support systems for their loved ones who have (or had) brain tumors and I have been told that our story has given others hope and faith. I am so glad that my words have been able to do that for so many. One big thing I have learned, brain tumors are not that uncommon!

Throughout the process, many of you asked how I was doing, how I was holding up, and if I needed anything. While those memories feel like eons away, I knew one thing the entire time... there was no other option but to be strong. Don't get me wrong, there were times that I cried, I cried big ugly tears, I cried in front of my children, I cried in front of strangers, I cried myself to sleep some nights.... but at the same time, I knew that my children saw me almost every day and I needed to be there for them. I knew that I needed to be able to give them hope and good news \, I also needed them to realize that I am human, and that humans feel emotion. I want both A and K to grow up in a world in which know that it is okay to express your emotions through tears, but that you also need to know when you need help. I want them to know that it is normal and okay for them to feel those emotions and others to feel those as well. Ultimately, I want both of them to understand how they can help those who have those big feelings, and what they can do for them. 

It's funny how life works, and in the last few months, I have noticed it more than ever. Some people tell me that they are God winks, some people think that they are coincidences, for me they have been little reassurances that God has been there this entire time. At the end of May, we had a large virtual continuing education conference for our College and our alumni. During one of the sessions that I was monitoring, the presenter was talking about how to manage finances and relationships for business owners in the midst of a pandemic. The presenter spoke about the loss of their spouse several years previously, and spoke about the struggle that they went through raising children alone, and how one day they realized that they had to pull themselves together to be that rock for their small children, even though they were broken. The story stuck with me, I remember telling my co-worker who had been monitoring the other room about the impact that the presenter had on myself, and how honest and raw her conversation was with the audience, but how impactful it was, not just to me, but to others. I had no idea what our family was about to go through, but I remember thinking to myself what a strong and resilient individual that person was. I remember thinking to myself that if I ever had to go through what they did, I would want to remember their words of wisdom. While my outcome was very different, I have no doubt that the feelings of the unknown, loss, confusion and what the future might hold, were very similar. I thought of this presenter often over the last two months, and how their words have stuck with me throughout this time. 

As for Kevin, he will be finishing up radiation in the next two weeks. He goes daily for a brief dosage. He has developed scar tissue, the hair on the right side of his head has fallen out where he receives the radiation and he is a little more tired in the evenings after going to work. Kevin reminds me daily that these side effects are a small price to pay for a big reward, and he is absolutely correct. He will have another MRI done in a few months to confirm that radiation has gone well. At this time, he has also been dismissed from the Neurosurgeon, and will only have follow ups with the radiation doctor. 

It has been just two months, 8 weeks, less than 50 days since Kevin's operation. I am in constant awe at God's grace and mercy that he has given our family. It is so easy to look at all of the 'What If's' that could have happened, I have no doubt that God's plan for our family, and specifically, Kevin is much bigger that we can ever imagine at this time, but that it is part of his plan. 

It has been easy to focus on all of the negativity in our news since March (who am I kidding, even before that). It has been easy to focus on all of the bad things that have happened to our family over the last few months and it could be easy to focus on all of the frustrations of starting school for Kennedy this fall. What I find ironic (and maybe that is not the right word), amongst all of this, is how easy it has been to see the blessings that are right in front of us. Obviously, Kevin being healthy and coming out of the entire situation is easy to recognize, but I have noticed the more subtle and quieter blessings. His level of interacting with A and K, his level of engagement with myself and his willingness to help around the house have increased tremendously. In turn, this has changed who I am. A few weeks ago my mom had commented to me that I have become a different person, and first I told her I was confused and that I didn't  think that I had changed. In fact, I was a bit taken aback at her comment. The more that I have thought about it, and ruminated on that statement, the more she is correct. Maybe it is because I changed some medications that I take, maybe it is because what happens at home is vastly different from 6 months ago; regardless, it doesn't matter why, she is correct, I am different, I have been changed, and for the better. I find myself more upbeat, I find myself more willing to engage with others, I find myself saying hello to strangers in the hallways at work (maybe I do know them, and just don't recognize them with their facemark on). Ultimately, I have found myself with more energy mentally than I have before. For the first time, in a long time, I feel like the person who I used to be and who I am supposed to be.

Thank you all of you who have followed along on this journey, we couldn't have done it without your prayers, texts, calls and visits. You are all truly amazing and have blessed us. 

The First Day

Today was a big day... Today Kevin decided that he was ready to go back to work full-time - in the office, in Topeka. I had tried to tell him that I wanted another week of him to be at home, his co-workers and colleagues tried to tell him that he should take as much time as he needed, his doctors however told him that he could resume his lifestyle when he was ready. 

Today he was ready. 

Honestly, I think he was ready a week or two ago, he has been working remotely the last few weeks, but they wanted his immune system to have a little bit longer before he went back into the world of germs. He also said that daytime TV was boring, but let's be honest, Kevin didn't really watch daytime TV. 

I joked the last few weeks that he talked a LOT more, there would be days he would come into the room I was working in to talk to me 5 or 6 times. Previously Kevin and I would only talk once or twice throughout the day when we were both working from home. We had both grown very independent, doing our own thing, taking care of our own business and converging at the end of the day to eat dinner together and work on bedtime with the kids. A lot has changed. A lot for the good. 

So this morning Kevin told me he was leaving at 7AM and I felt like I was sending a child to school for the very time, he was told to text me when he got to work. I called him a few times, just to see how he was doing, of course he sounded like the same old Kevin. I sent a Facebook message to another one of his co workers who works in his unit, asking her to check in on him, she made sure that someone did and I had a few reports throughout the day (unbeknownst to Kevin). 

Last week, I asked Kevin to stay at home and work from home for another week (or two?), he asked me why. He asked me what about the situation was I not comfortable with. He asked me if there was something I had a concern or fear about, if he was not okay and I had not told him. I paused, because that was the problem, everything is okay, everything has returned to normal, everything about life has started to resume. While I want to be thrilled with that, I am still so taken aback that just 4.5 weeks ago he had brain surgery. Just one month ago a surgeon opened up his skull and removed something THE SIZE OF A LARGE PEACH, and just like that, just 30 days later, his life has returned to normal. There is absolutely no doubt that he is a walking miracle today. 

Kevin made it to Topeka just fine, he worked all day, and he came home. He brought the kids home after I got done with my class, and he helped me with bedtime (which is a chore in and of itself). 

At the end of May, I told the kids that this was going to be 'the best summer ever', I had plans for us to swim in our little backyard pool, jump on the trampoline, go fishing, explore the outside and help me garden. Looking back, I would not title this the "best summer ever", but it has absolutely been the most unique summer ever. It has been a summer of blessings in disguise, blessings not in disguise and miracles on Elm Slough. We have spent more quality time this summer as a family of four than we have the entire time we have had children. Kevin has been more involved, active and engaged with Kennedy and Avery.  Kevin and I have had more conversations about our life together, our children and our family than we have in a long time. 

My blog posts will end soon, this chapter of life will be over (thank God I think we are on Jumanji, Level 7) soon, we have a few more hurdles to jump (I'll make a separate post about that), this has most certainly been the summer to remember. I have written more this summer then I have in more than ten years, taking an 8-week grad school course and writing this blog. This will soon be a memory, a blip on my time hop and a small reminder on my Facebook memories. A reminder that we are never guaranteed tomorrow, that life is short and fragile and a reminder of the amazing power of God and his love and forgiveness for all of us. 

A Humbled Patient

Sarah asked me to be a guest blogger today. She wanted my perspective on everything that has happened in the past few weeks. I think I can summarize the entire situation in one word: humbling. For those of you that know me, I’m pretty self-sufficient and don’t often ask for help. From the initial detection of the problem by the Eye Doctors in Manhattan to the removal of staples I have had to rely on someone else using their God-given gifts to help me make a full recovery. That has been humbling.

While I was sitting in the hospital in the week leading up to the surgery I had a lot of time to think. I got to think about how long God watched over me when I drove to and from work each day so I didn’t have a stroke or seizure. I got to think about what happens if I lose cognitive or physical abilities after the surgery and how that would impact my ability to work and care for my family. Then I thought about what happens if the tumor was cancerous or came back again. All of this was humbling.

After the surgery I stayed in ICU for about a day. During that time I heard people cry out in pain and sad family members of loved ones in rooms next to me. I was not experiencing pain and I was told that the surgeon felt like she got all of the tumor. While I knew there was still a road to go for recovery, I felt like my problems were minor in comparison to others around me. I was humbled again by God’s love and healing of me.

Since I have come home things have gone well. Sarah and the kids have taken great care of me, and I continue to try and do more things on my own each day. One thing that I have noticed since the tumor was removed is I can feel emotions better. I have been more engaged with my family and people in general. I doubt I become an extrovert, but I’m a more social introvert now. I play games with the kids and interact with them more than I have in years. Sarah and I are doing better as well. I’ve told her I’m not using the tumor as an excuse for me becoming distant in our marriage, but I do think that not having the tumor has allowed me to appreciate how lucky I am to have Sarah by my side. I am humbled at how strong Sarah is by not giving up on me and continuing to work hard to have our marriage be healthy. That is one area where I know I can be an active contributor now.

The final thing that this process showed me is how kind people are. The amount of love and help that has been poured out over all of us is overwhelming. This love was expressed through prayers, cards, gifts, meals, helping with household and yard chores, talking with Sarah to help her process everything, and text messages to see how I am doing. This isn’t something we asked for, it just happened. I will never be able to thank everyone enough for all that has been done for our family, but I am humbled by it.

I stopped by the office the other day for a little bit to see all of my co-workers. I miss them dearly as I have taken off more time in the past month than I have in the past 10 years combined. I was humbled by how many people came to see me and hear the good news about the tumor being benign. While I will still be out of the office for a couple more weeks, it did my soul good to see everyone and thank them for covering my workload during my absence.

I think that about summarizes what I have felt throughout this removal of Bartholomew (aka brain tumor). I thank God daily for the blessings he has poured out on all of us, but especially for saving my life. I will continue to seek out God’s plan for me, as I truly believe this was his way of saying, “I’m not through with you yet.” In just a few short weeks I have been humbled by medical professionals, friends and family, and most importantly God. I do feel like this is my second chance to live life to its fullest, love those around me harder, and most importantly continue to seek out God’s plan for me.

Title Pending.....

Tonight I sit in one of my favorite spots in our home, our back deck - in one of our two K-State purple rocking chairs, overlooking the sunset. The sunsets just to the left of my "thinking tree" the tree that I sit and look at in the mornings while drinking coffee or in the evening while having a glass of wine. I have shared a lot of thoughts with this tree throughout the past 5 years, have spent a lot of time in prayer here and a lot of time asking God some tough questions. 15 years ago I dreamt that someday I would be able to watch the sunset in my rocking chair, that I would be able to have a large garden, that I would have a family, and that we would have a small little hobby farm for our children to grow up on and to experience some of life's hidden and greatest treasures (I didn't dream about having a camel then, but I most certainly do now, so there are still goals!), I wanted my children to learn about love and loss, about living and dying, about the purpose and importance of raising livestock, to learn to love the land that they live on, and to leave things better off then how they found it (we are still working on that).... and here we are - living that dream. 

As I sit here tonight and reflect on those things, I am so overwhelmed by the last month. 

Today we had our follow up appointment in Topeka, this was the first time that we saw our PA and Neurosurgeon since the day we were sent home. One of the first Thank You notes I wrote when we got home was to our surgeon. I thanked her for giving Kevin a new lease at life, I thanked her for giving our children the father that they deserved and I thanked her for giving Kevin and I a new start and a second chance. There are so many other things that I want to thank her for, but I am not sure that there are words for so many of my feelings - I am still working through some of that. 

Today we found out that Kevin's tumor is benign, that it is a Grade 2 (it could be worse, it could be better) and that it is indeed a meningioma (we were pretty sure that it was this based upon what they saw when we got in there). We air hugged our surgeon, we shared a lot of our successes and we talked a lot about progress. He will most likely have some radiation, just to keep the tumor from coming back again, but this will be up to the hematologist and oncologist that we will meet in another month. Right now, we just want to focus on Kevin getting healthier and stronger. He has been released to begin to lift more weight each and every week (5lbs. for the first 3 weeks was not much) and is allowed to bend over. While he is not allowed to run, kick box (no 9Round for him) or anything aggressive, he is allowed to go on longer walks, ride his incumbent bike and other non-impactful things (Kennedy is excited to go on walks with him). We just don't want to shake his brain up. 

We went to Kevin's office, and all of the staff from the Shawnee County DA's Office came into the lobby. I have never realized how many people Kevin works with, he talks about different attorney's, different legal assistants and tosses names around here and there, but seeing their physical presence today gave me goose bumps. The love, generosity and compassion that his office has shown him through this process is something that all organizations should strive to do for all of their employees. While Kevin was in the hospital, I ate lunch one day with all of those who were around (and the conference room was full), I spent some time in Chuck's office with some of Kevin's co-workers, just sharing in what we knew and what was to come for this treatment plan. These were some of the happier times I had during that week, his co-workers shared stories about Kevin and silly nuances that he has (his lack of organization!).  In the past, I have criticized Kevin for being too loyal to the work that he does and is loyal to a fault, and today I realized why he has such a strong commitment to everyone there. Today I realized why that loyalty is so important. Today I saw that loyalty returned in prayers, love and social distanced hugs; not just today, but throughout the last month. 

Mike Kagay, your support of your attorneys and staff has not gone unnoticed, and our family publicly thanks you for that. 

On our way home tonight we hit Highway 99, as we were coming into Wamego I was so overwhelmed by our good news, our loving friends, our supportive employers (both of our employers) and everything that has happened, and the tears just started to flow. I have held it together for most of this journey, I found strength where I never knew strength existed. I have found confidence and calmness in a time of unknowns and turmoil. I have said to myself on more than one occasion "not today satan" when the negative thoughts, the what-ifs and the uncertainties started to surface. Today I cried happy tears on our way home, tears of joy, tears of thankfulness and tears of weeks of anxiety that I didn't even know where there, and I began to find peace. 

While today a very large chapter of our lives came to an end, a new chapter of our lives has begun. I have written more this summer between the blog and an intense grad school course, than I have written over the last few years. I have found peace and solace in my writing this summer, with the blog and also with class. I have started to find enjoyment in writing instead of the dreaded groan. To those of you who are following our journey we thank you, to those of you who have texted/called/IM'd/sent messages/communicated in some ways, we thank you. To those of you who have prayed for us or sent us positive thoughts, we thank you. To anyone reading this, we thank you. 

Kevin volunteered (I asked him) to write a blog post, I'll post that tomorrow so that many of you can hear from him. His progress is nothing short of a miracle. 

One Week

If the first 7 days leading up to surgery were overwhelming, this last week has been just as much, but on the opposite end of the spectrum. 

It is no secret that 2020 has not been the best year in terms of politics, racial injustice and that little thing called Covid-19. We have seen some of the worst of our humanity, our country has become more divided than ever over politics, race and whether or not we should wear a piece of fabric over our face (yes, you should, to protect Kevin at the very least).  There is constant violence throughout our country. While we all thought 2020 sucked, June 13 took an even worse turn for our family. There were some very dark moments for both Kevin and I together, and apart. In those darkest moments we found some of the absolute best parts of humanity that we never knew existed. The love, support, prayers, thoughts, texts, phone calls, impromptu visits, etc. have overwhelmed us in some of the best ways possible. This crappy situation has given me so much hope.

Many of you know Kennedy, she is a worrier, she is wiser than her 5 years of age, and she has little ears that listen and process more than we would ever think. For those of you who know Avery, you know this kid just cares about eating his fruit snacks and watching PJ Masks and running around outside. The love, care, attention and support that you have given our kids means more to me than anything. So many of you have stepped in and have loved our children like your own, and somedays that can take a lot. You know how to keep these children entertained, pre-occupied and to keep their minds off of everything happening around them. We know that KJ picked up on more of our conversations than we wanted her to (which is my fault because Kevin wasn't even here), and has shared some of her concerns that she has with both Kevin and I, which has been really discerning. This last week she has been able to act like the carefree 5 year old she should be, painting, drawing, talking, whining, swimming, running, and loving on her cats. 

I know that in 20 years, KJ and Avery will remember the outpouring of love for their family during this time. It is my hope that we teach them both about the value of helping others, the value of loving others and the value of giving others the support that they need. Even when they don't think that they do. 

As for Kevin, he is a walking miracle. I thank God every day that he gave us both a new outlook on our love and marriage together. While Kevin is absolutely still the same man I knew in college and fell in love with a few years later (because let's be honest, we would have never have dated in college), he has changed, and it is for the better. 

On one of my many trips back and forth to Topeka, the Rodney Atkins song "If you're going through hell" came on, and it felt so appropriate at the time

If you're going through Hell
Keep on going, don't slow down
If you're scared, don't show it
You might get out
Before the devil even knows you're there

Well I been deep down in that darkness
I been down to my last match
Felt a hundred different demons
Breathing fire down my back
And I knew that if I stumbled
I'd fall right into the trap that they were laying, yeah

But the good news
Is there's angels everywhere out on the street
Holding out a hand to pull you back upon your feet
The one's that you been dragging for so long
You're on your knees
You might as well be praying
Guess what I'm saying
If you're going through Hell
Keep on going, don't slow down
If you're scared, don't show it
You might get out
Before the devil even knows you're there

I hate that we had to go through hell and back to get where we are, and to where we will be in another year, but I am forever blessed for all of you who helped to hold us up during this time. 

Homecoming

Yesterday, just before 5, Dr. Crabtree came into Kevin's room and told him if he wanted to leave, he could.  The time between the official notice and us actually leaving felt like an eternity, but an hour or so later, we were on our way home. It was the last time (I hope) that I have to walk the long third floor hallway to Spine and Neuro to see Kevin, and the last time (I hope) that he has to sit in his room and be poked and prodded. 

Earlier in the day Kevin told me that the Hospitalist told him that he was most likely going home, so I spent most of the day getting ready for him at home - Hillary came over and walked through the house with me to make sure I didn't miss any red flags (minus the dogs and cats), and went over how to help him around the house. Once we got home, I literally turned around and he was already in the house. So much for waiting on me. 

The last almost 24 hours at home could not have gone better, the kids are so happy to see their dad, the animals all slept with him on the couch last night, thankfully I finally got the king size bed to myself (it still included a clingy 5 year old). Kevin is up and around, even getting Avery snacks and drinks when he demands them. He says he feels good, today he has a little more energy than yesterday. 

We have been asked about visitors, we don't want to have a lot of people over at once - but Kevin would love to see many of you. Please make sure that you do not have a temperature, do not have symptoms of Covid-19 and that you have not been around anyone who has tested positive or is pending a test. 

One Week

One week ago Kevin and I began navigating the unknown. One week ago, we raced across NE Kansas following blind trust in our doctors. One week ago we received devastating news. One week ago I sat in front of the Emergency Room at Stormont Vail, doubled over and, blinded by a flood of tears, waiting not so patiently for Covid-19 results so that I could be with my husband. One week ago I didn't know how I was going to tell our families, friends and children that Kevin had a brain tumor that took up a significant portion of his brain.  

Guess what - we survived. 

Throughout this past week we have realized how blessed we are, how blessed that he never had a seizure, how blessed we are that he didn't have a stroke, how blessed we are that none of this happened while he was commuting. Our blessings are truly abundant. 

Post Op Day 1, Kevin FaceTimed me at 6:30 this morning, he had already been down for his CT Scan and was not aware of what time it was. He was chatty, and getting ready to eat breakfast.  Today PT got him up, had him move around, he was able to walk, and short of his HR spiking, all other signs point to "doing well!".  They also removed the drain that was in his head, as they felt comfortable with how everything was looking.  Dr. Crabtree had warned us that the right side of his face would be incredibly swollen and his right eye may even swell shut - this morning he looked great - he said his jaw hurt and his nose felt swollen, but besides that - Kevin looks great. Short of the oompaloompa hat he has to wear.  

The CT Scan shows that his brain has completely moved back in place - they were astonished, not only because it happened so quickly - but because he also has not had a seizure. PRAISE THE LORD. Kevin says that he feels no pain, maybe a little swelling, but has not asked for pain meds at all. I told him that you don't get a trophy for not having pain meds, so he should ask for them as he would like.  

They are talking about releasing him on Monday to continue his recovery very at home - I would be lying if I didn't say that the thought of taking someone who is just a few days out of post-op brain surgery didn't terrify me. They say it takes a village to raise children, but it also takes a village to evict a brain tumor. We got this:). Thank you to everyone, I don't even know where to begin, your love and prayers are abundant.