One Year In

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.

The Hidden Side of Cancer – Caregiver Perspective

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,

Nikki

The Hidden Side of Cancer – Patient Perspective

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.

Hospital Update – Going Home

Daniel has been diagnosed with Sweet’s Syndrome. It is common with patients with blood disorders and those who take medications that boost production of white blood cells. Daniel falls in both categories. He is responding amazingly well to the steroids and I could see an improvement in the wound in a matter of hours, and it looks even better now. (If you google Sweet’s it talks of little red bumps, his lesions were a bit different. We keep joking that he always has to have the rarest things). He is still in pain but knowing what is going on and that there is an treatment plan has been great for him! This is not a chronic issue. They explained it is something that may pop up again later if there is a big change in his blood or immune system. Which can actually be the first sign that something is changing for some patients.

Sweet’s Syndome is a diagnosis of elimination which is why it took so long to determine. Also, it is rare. One doctor said he thought it was Sweet’s but he hadn’t seen it in over 20 years and it did look atypical from what you usually see. The researchers in the group will enjoy this, his case will be presented at a conference and possible paper.

We have a treatment plan in place which includes steroids.His immune system will be lowered from the steroids so we will have to follow some protocols to keep him from getting any infections but he should be healed up from the Sweet’s in a few weeks.

Then the focus will go back to figuring out the next steps for his MDS. More than likely they will do another bone marrow biopsy so they can determine what his MDS grade is, and then we will talk through all the options for treatment. Prior to the Sweet’s Daniel had been having increasingly worse weeks in terms of of his anemia and the MDS in general. The MDS also started affecting his white cells and platelets. For now we are taking it one day at a time.

So after 19 days in the hospital, 20+ doctors, countless bags of antibiotics, a couple dozen nurses, and lots of hospital food WE ARE GOING HOME TODAY!!!

God has truly blessed us in so many ways during all of this, providing for us in ways we didn’t know we needed!

Thank you for all the thoughts and prayers!

Hospital Update 10

13907188_10100846948560489_1720185420920199695_nDaniel made it to the drink machine today! He got a sweet video for making it to the nurses station yesterday. The nurse today said she would do the Charleston if he made it to the drink machine. She’s gone to YouTube how to do it. So thankful for staff that are encouraging! Everyone in the halls cheered him on even nurses that have never had him as a patient and the hostess that does his meals. I thought yesterday the wound was looking better but was worried it was wishful thinking. Both doctors said today it is looking way better!! Thank you for all the prayers and encouragement!

Hospital Update 9

It looks like we are getting closer to answers. They think instead of this being a true infection it is more an autoinflammatory response. They are thinking Sweet Syndrome or Pyoderma gangrenosum but leaning toward PG. Both are very common in people with blood cancer. Simple explanation, the white cells attack for no reason and painful blisters form as a reaction to the attack. They are going to start steroids today and watch over the weekend. If they are correct and it is either of these there will be improvement. If it is Sweet he will heal in a few days. If PG it will be months. Once they know which one and get the meds figured out we can come home and he can work on getting better there. Steroids decrease the immune system but it’s also the quickest and best way to treat him right now. Please continue to pray for him!

Hospital Update 8

They have narrowed it down some. The biopsy from Monday showed a low level of bacteria. It’s possible it was just on the surface but they are going to make sure the antibiotics cover it. There was also a high concentration of Neutrophils in the sample which could indicate Sweets Syndrome. Sweets syndrome is more common with hemotological patients, neutropenic patients and those on neupogen. Daniel is all three. It’s treated with a steroid so they want to be very sure that is what is going on before starting treatment. Steroids are rough on the immune system which his is already very compromised.

Oncology here will be working with Infectious Diseases and possibly Dermotology to verify. They are also going to talk to his primary onocologist. He is getting is normal blood transfusion today. He is still in a lot of pain and just feels crummy. Thankfully he has not had any high fevers but did have a couple of low grade ones last night.

We appreciate your thoughts and prayers more than you can ever know!

Hospital Update 7

They did a biopsy of the abscess yesterday to try to determine exactly what is causing the infection. Should know in a couple of days. He had a fever spike last night, it may have been an effect of the biopsy but he has been spiking one every other day for a few weeks now and they aren’t sure why. He has to be fever free for 24 hours before they consider a release and then he will have a least a month of antibiotics. His MDS just makes it harder for him to fight any infection. The doctors are all fantastic and want to make sure he is not release prematurely. We appreciate your prayers. Right now it is a “waiting game” as one of the doctors said. God continues to show us His love every day and I am so thankful for how He is blessing us!

Hospital Update 6

All the doctors have come in for the day. He wound is looking better. No more fevers! They want to monitor him a few more days and then release him. They said to plan on sometime next week. He has an appetite again so he is building strength. All the nurses are noticing the improvement because he is more talkative. He has actually made a quip or two. (It has been a couple of weeks since that last one which is just not Daniel). He even ordered orange sherbet with lunch and his pain is a 5 out of 10 today, the least amount of pain he has been in for over a week. Still a ways to go but the improvement is very encouraging. Unless something changes I won’t do updates for a next few days because it will just be sitting and waiting while the meds do their thing. Thank the Lord he is doing better! We are so thankful for all the prayers and for the nurses and techs here at Emory who have made his little room feel as comfortable as possible.

Hospital Update 5

All sources of infection outside of the abscess have been ruled out. There is not a pocket of infection to drain so no surgery is needed. They are giving him three types of antibiotics to fight the infection. They will monitor him for now and see how it responds. If needed they will biopsy the skin to figure out what exactly is going on. Daniel’s hemoglobin was very low (5.4). The average hemoglobin is about 14 and his normal is 7. With it being “critically low” it was causing a lot of symptoms. They have given him 7 units of blood since last Thursday. While he is still in pain from the abscess, he is not having all of the other issues he was having because of the hemoglobin. We hope to know this weekend what the game plan is moving forward. Right now, if he responds well to the medicine and they know it’s the right medicine, they will release him to go home and we will get a nurse to come in to give the IV meds. We appreciate all the prayers! He is looking at his phone for the first time in over a week so if you have contacted him and didn’t hear back that is why. It is nice to see him chatting and smiling more today. Praise the Lord for how He blesses us!