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.
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.
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.
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…
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.
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.
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.
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.
I’ve known I needed to post an update here for quite a while. But I honestly haven’t known what to post. Today is one year since my diagnosis. My entire life has changed in that year. New Year’s Eve 2015 was spent in Florida with my wife’s aunt and her family. We also made a day trip out to the panhandle to visit some friends. Looking back, I was tired. And I was dizzy. But I had no idea what was really happening.
When we got home, I had an appointment with a hematologist at Emory-St. Joseph on January 12th. Making the drive to Atlanta, I thought I was going to be getting the results of some CT scans and a new round of labs. Instead, my hemoglobin was dangerously low and I was admitted for multiple blood transfusions and for them to figure out once and for all what was going on. Four days, another bone marrow biopsy, more lab work than I can possibly remember, and six units of blood later, I had my official diagnosis. Not surprisingly, I had no clue how much of an impact it would have on everything.
We waited for a clinical trial, but after multiple delays, we decided to go ahead with the conventional treatment protocol. In the mean time, we also dealt with a nearly one month hospitalization due to Sweets Syndrome. The treatments have been going well. I just finished my 5th round this past week. My numbers have been holding steady for longer, and I have gone from needing multiple blood transfusions each week being able to go a few weeks in between. My white blood cell counts, while still low, are much higher than they have been – meaning my immune system is doing better.
Due to my extended absence, my employment with Georgia College was terminated in November and I’m now going through the process of applying for disability. It has been an insane journey. I’ve been through the Kübler-Ross model more times than I can count. But in the end, knowing it is a normal process and having a great team supporting me. And that makes finding acceptance much easier, even if I don’t like it. And I’m constantly amazed at the new people that have entered my life through the process.
Chemo isn’t fun. But being in the lab is like hanging out with old friends now. I’m spending more time enjoying ham radio and photography in between doctors appointments and treatments. I’m helping Nikki with Relay for Life, and have my own team (feel free to donate or join!). We also have several great fundraisers going with Thirty-One Tall Totes and Chemo Care Bags.
And mostly, I am trying to make the most of every moment. Every day is unpredictable. Some days I wake up and feel (comparatively) great. Other days, I have difficulty even getting out of bed. But either way, I’m grateful for being able to wake up and see a new sunrise. I don’t know what the second year may hold. But I know I can face it.
A few nights ago Daniel said he wanted to do a blog post but didn’t know what to write about. I said “Write about the stuff people don’t talk about”. I even offered to do the same from the caregiver perspective, I’m starting to rethink that now. I worry people will think I’m crazy, overprotective, weak, who knows. But one thing I’ve learned in this journey is I can’t help my feelings, just how I handle them. This is something I’ve always told others, guess I need to take my own advice.
One of the strong feelings currently is overwhelming exhaustion. Mentally and physically. I try to sleep, but have horrible nightmares or lie awake thinking. I’m doing a lot of thinking which leads to the mental exhaustion. I go to fix his medicine for the week and wonder “did I remember to wash my hands” and then wash them again just in case. Every food he wants to eat I’m checking to see if it’s approved for the neutropenia. I worry about people coming around him sick or that I’m going to bring home a bug from work. There are so many decisions that we have to make for every detail of his health. And so many people that are trying to be helpful by adding their opinions or wanting justification of decisions we have made. It gets overwhelming and exhausting.
Did you know that 25% of people have staph on their skin at any given time? Normally no big deal, for Daniel it can land him in the hospital. People wash their hands or use hand sanitizer, but what if they rubbed their nose right after? Noses are a favorite hangout for staph. He needs to wash hands after dealing with money, phones, keys, even his medicine bottle. We’ve gotten to where the remote, phones, debit cards and so much more get sanitized. The random knowledge you learn. I’ve had to learn a lot about MDS to be able to help Daniel. You have to understand a subject to know what questions to ask. Sometimes it’s too much information. And I worry how each decision is going to affect his health.
Fear. That’s another one. I will randomly wake up at night and check to see if Daniel is breathing because it’s so quiet I can’t hear it. Usually he snores. Sometimes he has gone into the living room because he couldn’t sleep. He’s woken up a few times with me staring down at him. If I text and he doesn’t respond for awhile I worry if he got dizzy and fell. When he first started getting dizzy there was a morning he almost did. I had to tackle him onto the bed because I knew if he hit the floor I wouldn’t be able to get him up. That was one of the few days he called in sick right at the beginning. People with MDS have to worry about three big things: getting injured and blood not clotting (thankfully not a concern for now), getting an infection that they can’t fight off, or their heart not being able to take the strain of working overtime because there isn’t enough blood flowing. That scares me.
It’s a roller coaster. Just when we thought we had finally found our “new normal”, Daniel starting spiking fevers. Two ER visits, one surgeon visit, a surgery, 19 days in the hospital, and 20+ doctors later, we are settling into our new “new normal”. Life changed so much with one little word. We thought we would start having kids. That plan is on hold, possibly permanently. Sometimes I’ll see a sonogram or baby picture on Facebook and there’s a little twinge of sadness. But God has put so many children in our lives to love and more are on the way, that helps so much.
Next week Daniel starts chemotherapy. Will our normal get turned upside down again? How is he going to feel? Is it the right choice? We have prayed and we have peace so I know it’s the right decision. I guess it’s my weakness that I still worry.
God has been so good to us through it all. He has been using His people in magnificent ways: words of encouragement, acts of kindness, songs that make my Spirit soar, so many blessings. One days I feel down (yes, caregivers get depressed too), I have started to count blessings. As one friend put it, it’s hard to be down when you start counting all they ways you’ve been blessed. Praying for all those around me and prayer requests that have been asked of me have helped too. I’ve learned I can’t control anything and some days I feel I’m not very helpful. But I can pray to the One that does ALL things well!
I’ll finish with this:
1 Thessalonians 5:16-18 (KJV)
“Rejoice evermore. Pray without ceasing. In every thing give thanks: for this is the will of God in Christ Jesus concerning you.”
Thanks for reading,
Cancer is ugly. I don’t think that’s a great secret for anyone. Granted, MDS doesn’t have any obvious, direct symptoms. It’s the friends that it brings along that cause all of the problems. But those friends are bad enough.
Anemia is the obvious one. It is hard to ignore the weakness, lethargy, and dizziness that highlight it. Even more annoying is the constant ear ringing and the supreme weirdness of being able to feel your own blood flowing through your body.
Along the way, neutropenia joins the fun. The hand washing dries your skin. The diet restrictions make you crave a rare steak with every fiber of your being. And while it has your immune system all haywire, it turns itself and all of a sudden the sores of Sweet’s Syndrome appear.
Beyond everything else is the mental toll it takes. It is still taboo to talk about depression, but I don’t care. To be an invisible illness, it has been the most real and consistent aspect of this entire journey.
I’ve always been quite independent, and not to mention hard headed. The transition from always being the one to drive to having to be chauffeured everywhere takes a mental toll. Not being able to go and do the job I love takes a mental toll. Not to be able to take a shower without wearing out and having to lay back down takes a mental toll. The stress of making medical decisions takes a mental toll. It all adds up very quick and becomes extremely overwhelming.
There are days I don’t want to get out of bed. Sleep is a welcome relief. Or, depending on the day, the thought of facing dreams seems overwhelmingly terrifying. I don’t want to think, move, or face reality. Or I’ll be having a good day, and something will make me crash, in almost a heartbeat. There is no way to prepare for that.
At first, I was so embarrassed about the depression that I didn’t want to tell anyone about it. But as it got worse, I had to. Just the freedom of being able to say, “physically I’m doing well, but it is an emotionally rough day,” worked wonders. Other times, I ended up curled up in bed listening to hymns until I got into a better head space. There is nothing wrong with being depressed. Take a look at Psalms 22:
My God, my God, why hast thou forsaken me? why art thou so far from helping me, and from the words of my roaring? O my God, I cry in the daytime, but thou hearest not; and in the night season, and am not silent… But I am a worm, and no man; a reproach of men, and despised of the people.
There are other examples all through scripture. The entire book of Job describes a man going through trials and being discouraged. But, just as God had not abandoned David, He did not abandon Job, and he will not abandon me.
I take comfort in that no matter what my body is doing, no matter what point of the rollacoaster my emotions find themselves, it is well with my soul. That simple fact is what lets me crawl out of bed in the morning and face the roughest of days.