Mycosis Fungoides: Eric and Crystal's Story (video)

Mycosis Fungoides: Eric and Crystal Shaw

Summary: Crystal Shaw cared for her husband, Eric, and their family through his three transplants. They both have wonderful insights to share.

Crystal and Eric Shaw

Mycosis Fungoides

Transplants: 2018 (2), 2019

A Long Battle to Healing: “Thank God the miracle is that the third one cured me.  I am fully cured. 100%:

(00:23) Eric Shaw:  I had a form of cancer called mycosis fungoides. It's a relatively rare skin cancer, and some of the symptoms, obviously, a lot of bumps can form, a lot of scars. Mine was the version that came with a lot of itching, which was probably one of the most difficult things to deal with, as it doesn't really allow you to sleep very well. It has an impact on you visually, so sometimes it's hard to look at yourself, and it causes you to go through a lot of mental struggles as well.

(01:11) In general, just living day to day with the disease is very, very difficult, and I can just say without support, without family support, without the support of my wife, Crystal, it would be very difficult to survive it.

(01:29) The treatments to deal with it are also pretty difficult. I've been through many, many forms of chemo and radiation over the years to subdue the disease, not really a cure, but really to delay the disease from taking over. Many of them were pretty harsh over the seven to eight-year period where we were trying to treat it.  

(01:58) Then at the end, the ultimate cure is a bone marrow transplant, and I went through three of those. Thank God, the miracle is that the third one cured me, so I am fully cured, 100%. Only a few side effects from that journey, but all in all, I'm definitely a heaven-blessed miracle to still be on Earth.

The Role of a Transplant Caregiver: “There were just a lot of extra steps, things that you just don’t normally think about, that we had to put in place.”

(02:28) Crystal Shaw: So as a caregiver, when my husband had cancer, I was the one that took care of him as far as the medical needs, just the day in and day out when he had transplant, cooking food, running errands, taking him to and from the doctor's appointments, making sure his medication was done correctly, making sure he took the medication, contacting doctors anytime there was an issue, and just taking care of him and our family.

(02:59) When we got closer to the transplant and the transplant process, we actually had to move from our house for about five months. Then there were special trainings that I had to go through in order to help with being a caregiver during transplant, which is very different than just a day-in, day-out caregiver.

(03:20) For a transplant caregiver, there are very specific things around what you eat. You had to cook a certain way. You couldn't heat food up in the microwave. Food couldn't sit out for longer than 15 minutes. You didn't reheat things on the stove; it had to be in the oven. Once you put it away in the refrigerator, there was only a certain amount of time, as far as days, before you had to toss it out. You had to make sure that you wiped the counters down; you couldn't use the same dishcloth or dish towels. We used a lot of paper towels. If you use a dish towel, you had to use it only one time and then get rid of it. So there were a lot of very specific things around bacteria and infection to make sure that those things didn't happen, so there was that part of it.

(04:11) Plus there was managing the pills, and there were lots of pills. Then it was every Sunday, managing the pill container, making sure things were set, making sure that he was actually taking the pills, making sure he ate. There were a lot of timers that I set.

(04:26) Then managing our kids. At the time we had two little ones and then we had two older ones that were away, and then we had the two smaller ones. Just managing the two things was kind of a lot.

(04:37) A lot of it was just kind of trial and error. I would get tags to put on the food containers so that I could write the labels to know this is the day I made the food, and this is when I need to get rid of the food. Looking online to try to find cleaning cloths and certain types of sprays and HEPA filters and things like that, just to keep the environment as clean as possible.

(05:02) Then when we came in the house, taking our shoes off outside, and then before we came inside not tracking in extra germs. When my kids would come from school, I would bathe them right away to get the germs off of them so that they wouldn't touch him before, because his immune system was so compromised. There were just a lot of extra steps, things that you just don't normally think about that we had to put in place.

(05:29) We had never dealt with this before. I didn't know anyone who had gone through this. There was not really anyone to ask any questions. A lot of it was just looking up things online, and then just looking at the handbook, and trying to be overly cautious. There was planning a few extra steps just to make sure that nothing was done that would compromise him.

(05:51) One thing that I discovered was just keeping a spreadsheet. I created a spreadsheet where I would list all of his medications, with the times and the quantities. When I made his pill containers, I made sure that everything was done correctly so that I didn't overlap anything, that we didn't miss anything.

(06:15) Making sure that the food, like a schedule of when he needed to eat, I just created a spreadsheet for that to document everything to make sure that he ate. It was just a matter of keeping track of things. Those things, just the spreadsheets and the charts, were really helpful because when you get to 25 pills, it's a lot. Then you start to forget things, and it can be dangerous if you forget to take a pill or if you give the wrong pill. It’s really important to be very organized.

Finding Balance as a Caregiver: “It couldn’t just be go, go, go and then fall apart. It had to be go, and then a break, and then go, and then a break.”

(06:50) When he first got diagnosed, our youngest was three months old, and I worked full time, and so managing that, my job, and my children, and we had two in high school. Managing all of that and everyone's schedule was a lot. But when we moved and we started the transplant process, the day in and day out managing of things, it can take a toll when it's just you by yourself. I'd get up early at five to try to have a little bit of quiet time, do a daily devotional, and then move into making sure to get the kids breakfast and then get his breakfast and then get the pills.

(07:32) It was overwhelming at times, and I remember one time that there was kind of a breaking point and kind of a transition when it just became, it was very overwhelming and there was really no place to go as far as quiet time. So, going from living in a large home where there are multiple places to move if you need that kind of alone time, to eight hundred square feet with four people, it was challenging.

(08:05) I remember, I think the girls were at school, and it was just Eric and I at the apartment, and the emotions and just the weight of the whole situation, it became almost like the walls caving in. I remember just having an emotional breakdown. That's when I realized, I said, "Okay, I have to figure something else out."

(08:30) For me, it was figuring out and managing that schedule and just knowing that I needed to figure out when I could find time for myself. Whether it was a quick 10-minute walk around the complex, if I could get someone to come over longer and then I could run to the store and just kind of wander around Target, or go to the gym for 30 minutes, it was just a time where I could  put some music on or just have quiet time and kind of recharge. That's when I realized it was important to make sure, it couldn't just be go, go, go and then fall apart. It had to be go. and then a break, and then go, and then a break.

Faith, Family, and a Miracle: “God didn’t bring us to this point to leave us.”

(09:14) Our faith in God definitely held us together. Without that, I don't think we probably would've made it. We have a really strong faith, and our church was a huge support system, checking in on us, checking in on Eric. I mean, the odds were not good.

(09:33) They had said that after the first two transplants failed and there was no donor. It was, let me think, it was September, and he was in the hospital, he had no working blood system, and the doctor said, "We only have one option. It's your brother." His brother was only a half match, and they had never done that type of transplant before at Stanford. It had been done at Johns Hopkins, but not at Stanford. And so he was basically kind of like a guinea pig, you could say.

(10:16) It was almost like a Hail Mary, right? It's like, "Okay, we're going to try this and we're going to hope it works." We just prayed, and we knew that God didn't bring us to this point to leave us, and we just prayed, and the doctors were just blown away that it worked. But not only did it work, but it worked to the point where he didn't have graft-versus-host disease (GVHD), he didn't have any lingering side effects.

(10:43) Every step of the way, we were just thanking God for this miracle of his healing and his health. To go from seven years of your spouse being sick and not really able to do all the things that he would like to do as a husband and a father, but then to the point of now you're healed, and now he's able to do all these things, take the kids to their activities, and he's back to working full time and we can take family vacations and all those things that we were not able to do and then now we're able to do. It's just, it's a blessing.

(11:23) When Eric initially got sick, he was diagnosed in 2013, and he was actually sick before that, we just didn't know exactly what it was. We had been pushing to get a second opinion. And so, when we finally did get the second opinion at Stanford, it was then that we fully grasped what was going on and how severe it was.

(11:52) The type of cancer he had affects 2% of the population and is really rare, it's a rare form. And so we were always working towards transplant. The problem is that for the transplant, we didn't have a donor. Most minorities, it's difficult to find donors, and so African-Americans specifically. It took us four years to get a donor.

(12:14) This is a verse that was really important to us during this journey. It's Romans 12:12. It says, "Be joyful in hope, patient in affliction, and faithful in prayer." This was important because we knew that through this journey, we were finding joy in the journey, but we also knew that there were a lot of trials. Our prayers and our faith in God helped us through this process.

(12:37) It strengthened our relationship. It really solidified us as a team working together, and it brought us closer together.

(12:48) The other thing that was helpful, and I think this is a critical part for caregivers, because you're an advocate for your patient, and so it's really important for you to be at the meetings because you're the one speaking on their behalf.

(12:59) Sometimes the patient is not even alert, right? There were times during the third transplant when Eric was not even coherent, and he didn't even know I was in the room. If I weren't there for days at a time, then I wouldn't have been able to address some situations because he wasn't able to speak on his own behalf, so that part is really important.

(13:21) I think it's also important to kind of build that rapport with your healthcare providers so that if something is going on, you feel comfortable talking to them and they're receptive to what you have to say, because at the end of the day, it's a team, right? We're working together as a team for the same common goal.

Beyond Caregiving: A Deeper Kind of Love: “Caregiver doesn’t really address the support…mentally, physically, emotionally, spiritually…Crystal is one of them.

(13:39) Eric Shaw:  Just saying the word caregiver doesn't encapsulate all that she was for me. Yes, the standard caregiver answer is she took care of all of my needs and took care of all of the needs of the family when I couldn't participate in caring for the family, she did that as well. Taking care of making sure all the nurses and the doctors were doing everything that they needed to do, making sure all the right questions were asked and answered in terms of my care.

(14:17) Here's the part that caregiver doesn't really address, it’s the support just mentally and when I couldn't care for myself because it takes a special unselfishness to really go into that extra territory, to truly give of yourself. She put her own needs aside so that she could be there to support all of my needs mentally, physically, emotionally, and spiritually.

(14:52) That type of care is unique, and there are only certain people who can truly do that, and Crystal is one of them. She was all of those things for me, all at once, and for the whole family. She's extraordinary. I still don't know how she did it all, but I'm just so thankful that she was in my life so that she could do it all.

Walking in Their Purpose: “Your trials become your testimony.”

(15:22) Crystal Shaw:  I think that it's given me purpose as far as knowing, helping others. We're very intentional when people we meet are dealing with cancer. Someone will call us and ask us, "Hey, so-and-so is dealing with this. Could you talk to them?" We're definitely very intentional about making time for that and making that a priority because we know the struggle of cancer, and I know the struggle of being a caregiver. I wouldn't even say struggle, just the journey of it.

(15:56) We know that if we can help somebody else through that process and help them to be able to find joy in the journey, but also to be able to make it easier for them. Through this process of cancer and this journey, we've been in contact with other families that are affected by cancer, and so it's kind of been us walking in our purpose. You go through things for a reason, and so your trials become like your testimony.