D-Day + Two Years

Diagnosis day, it’s here again. Some days reach the level you don’t even have to say what it is. Birthdays. Holidays. Anniversaries. But not all of those anniversaries are good things. Some of them are reminders of the world turning upside down. Realizing that nothing would ever be the same. A total change in your perspective, in your life.

Read moreD-Day + Two Years

Biopsy results and path from here

Treatment Update: Immunosuppressant Therapy

As I posted back in October, my transplant doctor wanted me to discontinue my chemotherapy and see if my bone marrow loss was due to it or to the cancer. I had the second biopsy on December 18th, and received the results today. The bad news is there was no change in the results following the discontinuing of chemotherapy. But the good news is there were no cancer cells in the sample, which means the MDS is not progressing to leukemia. Based on these results and other genetic testing, it appears that I have a subtype known as hypoplastic MDS.

Read moreBiopsy results and path from here

Join me in the fight against cancer – Relay for Life 2018

If you know me, you know that beyond my faith and family, there are two causes close to my heart: amateur radio and cancer research and prevention. Now, it is time for the latter to once again move to the forefront of my efforts as fundraising for the 2018 Relay For Life of Baldwin County begins.

Read moreJoin me in the fight against cancer – Relay for Life 2018

Marrow Biopsy Results

Well, it’s been a week since I got my results, and I just realized that I never posted an update. So, here it is.

I got the results Tuesday (October 3rd). We had gone up to Atlanta the night before, as we typically do with morning appointments. The 2 1/2 hour drive up is bad enough without dealing with morning rush hour as well! Plus, it gives us a chance to eat dinner at Cowfish. My taste buds gave out on me part way through, but it was still a fun experience.

We got up the next morning, had a hotel breakfast, and headed on to the doctor’s office. Thankfully this time, we were not delayed by a flat tire the way we were on the day of the biopsy. But I will say… the parking deck of Tower at Northside Hospital was NOT designed for full size trucks. Or really anything above the size of a bicycle. But that’s beside the point…

Hanging out in the consult room waiting for the doctor.

Since it’s flu season, everyone in the office has to wear masks since most of the patients are immunocompromised. Nikki got another example of why I can’t stand the masks, but it did make for a smashing photo…

So, for the actual results. The cellularity, or how the volume of the cells compares to the other components, was at 10, down from 30 when I was diagnosed. For someone my age, it should be around 70. This means, not shockingly, that the marrow is not producing enough blood cells, and what cells they are producing are malformed. That much we knew. What we didn’t know was that while my CBC levels (which are checked twice a week) had been holding fairly steady, production was down overall. There are two possible reasons for this. It could just be a normal progression of the cancer, or it could be a reaction to the chemotherapy. If it is a reaction to the chemo, it is possible that the subtype of MDS I have could be treated effectively with a different protocol. If it is progression, that would signal to go ahead with a marrow transplant.

I got a unit of blood on Monday. They took it all back on Tuesday. This isn’t even all of the vials.

So to be sure, they have discontinued my chemotherapy for three to four months and then will perform another biopsy. If the cellularity improves, they will try the new protocol. Otherwise, we will move forward with the transplant. They did say I had several matches in the database, and that is just a matter of which one could come in for the donation first. They also drew [a LOT of] labs for more bloodwork. So things are progressing, even though for now we are waiting.

So for now, we will continue the twice a week bloodwork. I’ll still be getting a growth factor injection (Arenesp) every three weeks to boost red cell production. I’ll also be getting blood transfusions as needed as I have been, and was doing prior to starting treatment. So for now, we wait and see. And as always, pray for guidance and blessing.

Another test, or why my hip hurts

Nikki and I as I was about to be wheeled down to the procedure.

This week, as if dodging Hurricane Irma wasn’t exciting enough, I also had to travel to Atlanta for a new bone marrow biopsy. This was my third. First one indicated possible MDS in November 2015, but it was such a long shot they kept looking for a cause elsewhere. I had another one in January 2016 that led to my eventual diagnosis. This one was for a more exciting prospect. This bone marrow biopsy was one of the early steps in moving forward with a transplant. There is still a long way to go, but there is progress. And, progress is exciting.

Since I had to be at the hospital at 7 AM, we went up the evening before. Had dinner at The Cowfish, which despite the mind boggling fusion of sushi and burgers, was delicious. We got up, headed to the hospital the next morning, and had a flat tire.

A flat tire. Seriously? The good news is I drove around the hotel instead of pulling straight out into traffic. As annoying as it was, we were able to deal with it in the hotel parking lot instead of on the side of the road. And y’all, I have a superhero wife too. She was out there right with me working to get it changed, and doing it quickly enough that we were only 15 minutes late for my appointment.

The biopsy went well. I was sedated, so it was much better than the second one. The only complaint I have is they didn’t use my port, which means I had to get an IV, in the hand no less. But, that is just a personal annoyance.

We’ll get the results in a few weeks, and then we will know more about moving forward with the transplant. Until then, I’m still going with the chemo, Survive and Thrive “therapy”, biweekly blood tests, and blood transfusions when I need them.

Thoughts on Charlottesville

It has taken me a while to write this. My heart hurts with what has happened, and it is difficult for me to find words. However, I know I cannot be silent.

I am a Christian. I am male. I am southern. I am descended from ancestors who were primarily Anglican and Celtic. I am proud to be each of these, and I should be. They are who I am. They are what made me.

But, I am also angry. No, I am outraged. How DARE these perversions of everything I hold dear openly proclaim the direct antithesis of these values while claiming to operate under their banner?

My faith tells me God created all things, and all of humankind is in his likeness. We are all descended from one man and one woman. Scripture never mentions race. It talks about tribes and nations, but those are political and cultural differences.

More than being a man, I strive to be a gentleman. This means I treat everyone with civility and respect regardless of background, social standing, and or potential benefit to me. Even more than that, I am a southern gentleman. I say y’all, sir, and ma’am. I can brew the best sweet tea you have ever tasted and put away fried chicken with the best of them.

As I research my ancestors, I find men who fought with honor. Unfortunately, through the lens of history we see that their causes all had blemishes. Slavery during the Civil War is at the forefront, but the internment of Japanese-Americans during World War II, treatment of the Native-Americans during the westward expansion, and the allowance of slavery in the first place are all dark blemishes on our collective past. But, as painful as reminders of these can be, it is important to keep them at the forefront of our memory.

The memory of this nation is short. We need the reminders. We need to be shocked. We need to experience the pain of what we have done. Only through that will be always be on our guard to never let it happen again.

We cannot rewrite history. We must celebrate the accomplishments of the past while recognizing the failures of the same men we herald. There is no historical figure who was perfect, and neither are we. It is up to us to do the very best we can to strive towards the ideal of liberty and equality espoused in our founding documents. We will never be perfect, but we can be better. We must be better. We will be better.

That being said, there is no place in the political conversation for those who wish to eliminate or segregate all those who disagree with them. The foundation of our political system is discourse, not violence. Until we return to civility with each other, the nature of our republic itself is in jeopardy.

Violence has no place in the discussion, from either side. If you feel the need to resort to violence, you should re-evaluate your argument. White supremacists who defend your arguments with scripture, try reading it for yourself for a change. Don’t call yourself Christian until you start behaving like a follower of Christ. Don’t claim your racism represents southern heritage until you embrace how many aspects of southern culture came from Africa.

We are one nation. This nation was built on the idea that ALL men (and women) are created equal. They share the same rights, responsibilities, and struggles. We are all in it together. Let’s act like it.

A Year Like No Other

This time last year, I was being admitted to ORMC and being prepped for surgery for an “abscess.” Twenty-one days later, most of which I had spent barely conscious at ORMC and then Emory Midtown, I had been diagnosed with Sweet’s Syndrome. It was yet another condition I, my family, and most of my medical team had never heard of. Thankfully, we were at a hospital where someone had seen it before (which is a huge feat given only a few hundred cases have ever been documented). Even after I made it home, I faced the worst depression I’ve ever endured, being unable to walk or care for myself, and continuing pain. Eventually I graduated from the wheelchair to a cane. I was able to drive again. And now I’m able to walk unassisted again.
 
Me with my wife and parents following dinner on the one year anniversary of my hospitalization leading to a diagnosis of Sweet’s Syndrome.
It has been an incredibly long year, but I am grateful for how it has brought me together with my caregivers (especially Nikki). I am grateful for caring nurses that went to extraordinary lengths (including learning the Charleston) to assist in my recovery. I never want to go through it again. But I am glad for the things I learned through the process.
 
Tonight, I went to dinner with Nikki, Mom, and Dad. We had fun. I drove us there. I walked in by myself. I ate something other than grits (which was basically the only thing I ate from August through October). And I am humbled by how blessed I am.

Oh, what a weekend…

To say that this past weekend was involved would be an understatement. Really, it was the entire week. It started, for me at least, on Tuesday with the Relay for Life Survivor Dinner. Wednesday, I started the Survive and Thrive program at Georgia College. Then on Friday, things really got crazy.

The day started with the Georgia College Celebration of Excellence. I hadn’t been on campus much since having to give up my job, so it was great to be able to see old friends and coworkers. But the highlight of the ceremony was getting to see my wife receive the inaugural Eve Puckett Community Service Award. Nikki worked hard to earn that honor, and it was well deserved. She’s worked with student groups, Relay for Life as a team captain, event leadership, and finally event lead, not to mention her tireless devotion to her students. But, that was just the beginning of the day.

Friday night was Relay. As soon as she smiled for the pictures following the award, Nikki had headed straight to the event site. She worked all day setting things up and making sure things went perfectly. She worked her heart out for it, and it was perfect. It was an amazing night, and she did wonderfully. It was well into Saturday morning when everything wrapped up and we made it home, but mixed with the exhaustion was a great sense of satisfaction. WordPress isn’t letting me upload photos for some reason, but I have all them posted in a Facebook album.

I am incredibly proud of Nikki. In the past year, she’s become a supervisor at work, was selected as the Relay event lead, received the award, and has been a great caretaker. She has accomplished a lot, and I look forward to what the upcoming year will bring.

Thoughts on the Inauguration

“The terms of the President and the Vice-President shall end at noon on the 20th day of January, and the terms of Senators and Representatives at noon on the 3rd day of January, of the years in which such terms would have ended if this article had not been ratified; and the terms of their successors shall then begin.”
~ United States Constitution, 20th Amendment, Paragraph 1

January 20th. Every four years, the executive branch of government in United States changes. It is a time of celebration for the victors, and of mourning for the defeated. Today, Donald J. Trump becomes the 45th President of the United States. He has been called both a great liberator and the next Hitler. A hero and a sexual predator. But today, for both his supporters and opposition, he will be President. But even more importantly, he is just a man. A man who holds the highest office in the land, but still a man.

President Obama has served this country for eight years. While I disagree with many of his policies and actions, I am grateful for his service. It is no small task to bear that responsibility and spend that amount of time in the spotlight. While I am all for opposition to policies, he and his family were attacked for things well outside the sphere of things which are up for public discussion. These attacks were despicable.

President Trump will likewise have many detractors. Some opposition will be legitimate; some will be attacks on matters not involving the public interest. As always, this country is sharply divided. Some say this division is the worst it has ever been, but I don’t believe that assertion. It is simply more highlighted than it has been in the past. Social media, despite its positive attributes, reinforces the divisions by highlighting stories which with the viewer agrees, and hiding those in opposition. So, to everyone reading this, I encourage you to be a critical consumer of information. Don’t fall for the click bait, alarmist headlines, and other marketing tricks so prevalent in these times. Check stories from multiple sources, including international when possible.

To my liberal friends, both you and the country will survive this. Our Constitution has survived great presidents, horrible presidents, times of great tragedy, and times of great prosperity. And it was designed to do so.

Federalist 10 makes it clear The Constitution was developed to allow for these changes:

It is in vain to say that enlightened statesmen will be able to adjust these clashing interests, and render them all subservient to the public good. Enlightened statesmen will not always be at the helm. Nor, in many cases, can such an adjustment be made at all without taking into view indirect and remote considerations, which will rarely prevail over the immediate interest which one party may find in disregarding the rights of another or the good of the whole.

Even in my lifetime, the country has swung from Reagan and Bush to Clinton, to Bush, to Obama, and now to Trump. That is why we have a system of checks and balances. And that system is what makes this country great. The presidency, while the most visible, is still just one office under our system of government.

To my conservative and libertarian friends, do not fail to hold Trump accountable because he has an R after his name. Everyone is taught about the systems of checks and balances. But most of the discussion is focused on the three branches of the national government. But in reality, it is so much more than that. The media must perform their role of letting the citizenry know what is going on. Focus on true journalism, not sensationalism. The national government is accountable to the states. The states are accountable to the national government. The branches are accountable to each other. And most importantly, all of government is accountable to its people. If the Trump administration pursues a policy which is in violation of conservative principles, let your outrage be heard. The other side surely will, and it does no one any good by our silence we get our consent.

We do not know what type of President he will be. But I do pray that he will be given wisdom and understanding. I pray that the country will prosper, be safe and secure, and be worthy of the patriotism of its citizens. Let us unite as one nation and let us all be Americans.