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

I’m a pin cushion…

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.

2016-02-19 10.16.33The 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.

2016-02-27 15.30.38Friday 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!