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.
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.
I need to brag on some folks for a bit. My entire care team has been great, but the crew at ORMC Ambulatory Care has earned a special place in my heart. No one wants to go to a hospital for a transfusion, but if you have to go through it, it is comforting to know that you have a great team behind you. All of them are great, but Kim, Erin, Angie, and LeAnn have become like family.
I’m not an easy stick; I’ve never had been. Normally, by the time the IV is started it has taken all three of them and an ultrasound machine to get it going. While my oncology team was hesitant about me getting a port, they convinced them that the access issues were serious enough to warrant it. So, as I type this, I am getting this week’s transfusion through my newly implanted (last Tuesday) port.
It takes a special kind of person to be able to work in healthcare, and even more special to be able to work with cancer patients. But it is a rare individual indeed who can make someone look forward to spending 2-4 hours in a transfusion chair, just to get to chat with them. And these nurses are a credit to their profession and to humanity as a whole.
Even though I wish it could have been at a social function, I am glad to have had the honor to meet these women. And I most certainly hope to keep in touch with them long after my days of weekly treatments are completed.
It has been an interesting few weeks as far as treatments go. On the 18th, I went to Dr. Gupta for what I thought would be an Aranesp injection. Instead, it was just another round of labs. My hemoglobin was only 6.7, so they promptly sent me across to the hospital to do the workup for another blood transfusion. Have I mentioned I’m a hard stick? Between Gupta’s lab and the hospital, it was 7 sticks to get two draws.
The next morning, I skipped several ceremonies at work that I really wanted to be a part of for an event I could have done without entirely. Well, not entirely. But if I could get the benefits of two units of blood without an IV sitting in my arm (it was another two sticks to get that going…) I would be very happy.
I don’t remember much about that weekend. I was pretty much in a fog for most of it. But I did know that I still felt rough. So, Monday I called and set up another appointment. The phlebotomists tend to look at you weird when they spend an hour trying to get blood out of you on Thursday, and you end up back in their chair on Monday. Sure enough, I was only at 7.6, so they ordered me another unit for Wednesday. Total sticks for the day? 8.
By the time Wednesday came around, I was totally famous. They tried a couple of times to start the IV, with no success. They ended up getting three nurses and an ultrasound machine in there to get it going. One of the nurses I have about 40 friends in common with. I have no idea how I haven’t met her before now. Well, I did, but it was last September when I went in for the bone marrow biopsy, but that’s a story for another day.
I went back to the cancer center on Thursday for another round of Aranesp and labs. There are some advantages of being known… I walked in, they had me a ginger ale waiting, and they held the other patients back so the entire lab could work on me together… or maybe it was so I wouldn’t pass out and wipe out another patient on the way down… I’m not entirely sure. But they got it on the first try (hemoglobin up to 8.0, yay!) and I was able to get my injection of liquid fire.
Friday and Saturday were the most productive days I’ve had in quite a while. I was knocking items off my to-do list at work all day Friday. As for Saturday, well… I’ll let the picture speak for itself. The shelf was a project I had been working on since last July. Dad came over and helped me get it finished, or at least most of the way so. It still needs painting and the doors mounted, but I’ll take it. We also got the garage cleaned out from the disaster area it had been from one too many projects going on at the same time. Added to that, my in-laws helped me swap the guest bedroom and my office. Everything looks so much better now. I’m exhausted today, but it is an exhaustion that comes with a tremendous sense of accomplishment.
This upcoming Friday, we have an appointment with the main doctor at Emory. We’ll head that way Thursday after work and spend the night. Oh, the joy of 7:40 AM appointments!
Well, it has been a little over a week since I heard the earth shattering words… and I still don’t think it has fully sunk in yet. They gave me a weekend pass, but I had to go back up to Atlanta on Tuesday for more labs. I also had a discussion with Dr. Szabo, who referred me to Dr. Khoury at the main Emory campus to develop the overall treatment plan.
I had a meeting with Dr. Khoury on Friday. For now, he wants to focus on hormone injections to stimulate red cell growth. Eventually, I will need a bone marrow transplant, but for now, the probability of serious complications from that procedure is greater than the MDS turning into leukemia.
I’ll still receive transfusions as needed, and eventually Dacogen may be on the table as a possibility as well. But for now, the main goal is to get my weight under control to make the marrow transplant less risky when it is needed. So, this blog will also be covering my weightloss journey.
I had been feeling “off” for a little over a year. I wrote it up to being over weight, and the occasional blood sugar drop. I was going to the doctor for regular checkups, but nothing turned up. There was the issue of not ever being able to do blood work. Because neither the nurse nor the PA could ever get a good stick on me, it was always written up as something that would be done next time.
This past summer, I changed doctors. The new practice had on-site labs, and dedicated phlebotomists. They did the long overdue blood work, and there were some abnormalities that indicated I was slightly anemic. At the time, it wasn’t that big of a deal, but the new doc was through. He sent me to a gastroenterologist for a full workup to look for internal bleeds. After a colonoscopy, endoscopy, and capsule endoscopy, nothing turned up.
After the clean GI exams, the next stop was a hematologist. More blood tests were done, with the only result being a decreasing hemoglobin. Next was a bone marrow biopsy, which showed no signs of any issues, other than it having an extremely low density and that it was not producing red blood cells. Finally, I was referred to specialists at Emory Healthcare.
I had my initial appointment there with Dr. Szabo and did a ton of blood work. After the holidays, I was also scheduled for a CT scan to check my liver. This past Tuesday, I went for the results. While the report from the scan was good, the results from the blood work was not. I had gone from slightly anemic during the summer to severely anemic in December. In fact, it was low enough that they walked me from the appointment directly to hospital admitting.
Over the course of four days, I was given six units of blood, which brought my hemoglobin back to acceptable levels. They had also pulled more blood for labs than I can possibly count and did another, and more extensive bone marrow biopsy, we had an answer as to what was causing everything.
Dr. Szabo and Dr. Bodo gave me a diagnosis of Myelodysplastic Syndrome, which is basically unheard of in someone my age. This blog will chronicle my journey through this process, and maybe connect with other people who are going through a journey of their own.