The day after my transplant, I had two more days of chemo. It was really strong, intense chemo. This isn't typical to have more chemo, but I had opted to join a research group. The hope was that more chemo would prevent GVHD, Graft versus Host Disease. GVHD is a complication of transplant. It happens when the donor cells recognize my cells as being foreign. And then the donor cells begin to attack my cells. It can happen in lots of different body systems. They warned me to let them know if anything felt or looked different. GVHD of the skin can cause a rash that can permanently change the pigmentation of your skin. When they told me about intestinal GVHD, I thought, ‘I'll have that.’ My stomach has always been sensitive.
By the end of the first day of chemo, I felt awful. So awful, my medical team decided to admit me to the hospital for day two. That was much better. Rather than getting up early, walking what seemed like a mile from the parking deck to the clinic, then sitting in a recliner for six hours getting a huge amount of fluid and then chemo, I could stay in bed. I could get the same amount of fluid spread out over 24 hours so I wouldn’t feel so overloaded. And then when the chemo made me sick, the nurses could give me IV medication rather than my pills I had at home. It would be the same medicine, but IV medicines work so much faster. Also, since the ICU scare, I was terrified to not be in the hospital when my counts were so low and I was so susceptible to infection. The hospital just felt safer all around.
I stayed in the hospital for 48 hours and then my doctor told me I could go home. I told him that I really didn’t feel comfortable going home. He said he understood. We discussed it and he told me I could stay a couple more days. A few days later, my counts were wiped out and so was I. I was exhausted. My doctor took pity on me and allowed me to stay in the hospital. I was so grateful! I had a huge corner room with windows all across one side. Rob had a couch he could sleep on. There was plenty of room for my parents to visit without us all feeling cramped. And, the nurses had become my friends. I was so grateful to be in my element, with my people, and have people to talk to. Since diagnosis, I saw Rob, my parents, and my in laws on a regular basis. I love them all dearly and I never get tired of them. But I was also happy to have fresh faces.
Physical therapy and occupational therapy worked with me some more. They were all amazed at how far I’d come since ICU and that made me pretty proud of myself. The occupational therapist said she’d never had a patient come so far, so fast. Out of all the things I’ve accomplished in my life, who knew it would be feeding myself, putting my socks on and walking that I’d be most proud of? Working with PT and OT helped a lot to get my strength back. Another bonus to staying in the hospital.
About two weeks into my stay, I started to have stomach problems. Nausea, vomiting, diarrhea. I was tested to be sure it wasn’t a bacteria or a parasite. It wasn’t. The next step was testing for GVHD. They consulted a gastrointestinal doctor. The plan was to do an EGD and colonoscopy. They run a camera and a light down your throat and up your large intestine. The doctor would take biopsies and we'd see if that was GVHD. I've had those done before, so I wasn't nervous.
The tests were done and within a few days, the biopsies came back as inconclusive. So we continued to treat the symptoms. Finally, my counts came up and I was able to go home. For the first 30 days after transplant, I had to go to the clinic every day. So I went home and then back to the clinic the next day.
Within a couple of days, my nausea, vomiting and diarrhea were back. It was manageable with my medications though. I continued to go to the clinic every day. A few weeks out, my diarrhea was worse. I almost couldn't make it to the bathroom in time. It kept me up all night. I would sleep for an hour or maybe two and then be back to the bathroom. It got so bad, instead of going to bed, I would sleep in a giant chair in Rob's office because it was closer to the bathroom and easier to get out of than the bed. Rob put some cushions on the floor and slept with me in the office so he could be near me.
I was so exhausted, I would sit on the toilet with my head slumped against the wall or the door. Rob would come stand in front of me and I'd rest my head against him and he'd rub my back or put a cool cloth on my head. I told my nurses and mid-levels at the clinic. They started more medicine. It didn't work.
It was like I had the worst stomach virus I'd ever had, and it was lasting for weeks. One day at the clinic, I made trip after trip to the bathroom and nothing was stopping it. I told my nurse that she needed to get the nurse practitioner. I told her this was out of control and something needed to be done. She gave me a stool kit to test my stool again. This nurse wasn't my usual nurse and, honestly, was not that concerned. Unfortunately, my usual nurse practitioner wasn't there that day either. Finally I convinced my nurse to tell the NP what was going on. The NP suggested that the nurse give me Ativan.
In my normal, pre-leukemia life, I didn't take much medicine. Half a benadryl could put me out for 12 hours or more. I certainly was not used to Ativan and told my nurse that. Furthermore, I wasn't sure how Ativan, a med used in ICU as a sedative, was going to help diarrhea. It turns out, Ativan is used often in leukemia patients to control nausea and vomiting. I cannot attest to its effects on diarrhea. The nurse gave me Ativan and I went to sleep.
About two hours later, the nurse woke me up, told me my fluids were done and I could go home. I could barely stand. She said,’Do you need me to wheel you to your car?’ I told her no, I could make it. I went to the bathroom first. I still had diarrhea. Now I was drowsy with diarrhea. I told my nurse and she told me to go on home and she'd let the mid-level know. No one was concerned. That's not true, Rob and I were concerned. But we had argued and pushed as much as we could. No one was listening.
I made it to the car and I don't remember the drive home. However, when we were close to home, the diarrhea hit again. Rob let me out at the door and I rushed to get inside. I didn't make it. But I was so numb from the Ativan, I didn't care. I carefully took my pants and shoes (yeah, it was in my shoes) and balled them up. And I went to the bathroom. When Rob came in, I told him what happened and asked him to start the washing machine. He did and washed my pants and shoes while I got in the shower.
After the shower, I just wanted to lay down and sleep. So I laid down. And soon I was up again to the bathroom. Rob called the clinic and insisted I be admitted to the hospital again. They agreed and we went straight back back to the hospital. The hospital that is right next door to the clinic. Had my nurse and NP listened, I could've saved myself all the trouble of going home, not making it to the bathroom and then coming back. But they didn't.
At the hospital, I had wonderful nurses though. Rob and I went in and gowned up to enter the unit. I went in ahead of Rob, because, of course, I needed the bathroom. The secretary told me which room I was in and I went there alone. I quickly attempted to change into my hospital gown and then go to the bathroom. Again, I didn't make it to the bathroom. And this time, I was also throwing up. I pulled the emergency cord in the bathroom and within seconds, one of my favorite nurses was there. I apologized for getting it all over the floor and I told her I wanted to clean it up but couldn't. She shushed me and told me if I'd tried she probably would've been picking me up off the floor too. There is nothing quite so humiliating as not making it to the bathroom in time. I felt a special empathy to my patients because of that episode.
There were so many hospitalizations, I'll spare you all those details. At some point, there was another EGD and colonoscopy done. Again it was inconclusive. More medications were added. Steroids were added. During one hospitalization, I mentioned briefly to the nurse practitioner that I had a slight cough. That was it. No sore throat. No runny nose. No fever. She did a nasal lavage to check for viruses. Because that's how on top of things they are there. They don't let things slip through the cracks.
My nasal lavage came back positive for RSV, Respiratory Syncytial Virus, which is a virus babies get. Apparently it is also a virus immuno compromised patients get. The treatment for this was a breathing treatment three times a day, for two hours a day. And then no one could enter my room for a half hour after the treatment because this potent drug was still in the air. It was a particularly lonely time. I watched a lot of Netflix.
Any visitors had to wear a gown and mask the entire time they were in my room. Because of this, I told Rob to sleep at home instead of staying with me. He still came by every day and spent hours with me though. Some nights he would sleep at a friend's apartment nearby because it was close to the hospital. This way he could see me again in the morning. My parents couldn't be there everyday, but they still came as often as they could. They'd sit and visit in their gowns and masks for as long as they could stand it. Then they'd take a break, walk around the hospital, take pictures of interesting things they saw and then they'd come back and visit some more.
Luckily, almost all of my respiratory therapy crew from my hospital had relocated to this one. So they all came to visit. And, despite the distance and discomfort, I had friends from Alabama to come visit me as well.
I barely had a cough to begin with, but by the end, I had a cough that wouldn't go away. A hoarse, barking, painful cough. With all the diarrhea and vomiting, I actually never lost any weight. I still managed to keep myself fed and hydrated. This cough was so bad, I lost about 15 pounds in two weeks. I'd never had anything like it. I stayed in the hospital, confined to my room so I wouldn't spread the virus, for about three weeks. During this three weeks, the doctors had managed to find the perfect combination of meds to control my intestinal GVHD. It involved a lot of steroids.
Finally, I wasn't going to the bathroom all the time and finally, I wasn't nauseated all the time. What I didn't know was how awful the side effects from the steroids would be. Cosmetically, my face blew up. My dimples were gone. My mouth shrank and so did my nose, disappearing into all this excess bloating. My cheeks were so fat, if I slept on my side at night, I'd have to lift my cheek so it wouldn't occlude my nose so I could breath. I was already bald and my face blowing up the way it did made my self esteem plummet. I felt like I looked like a hobbit. Or some other creepy creature. It was a terrible time.
Physically, the steroids were breaking down my large muscles. All the progress I'd made since my ICU stay was slowly leaking away. One day I squatted to pick something up, something I'd do 200 times a shift as a nurse, and I couldn't stand back up. My muscles were so weak, I couldn't push myself back into a standing position. I had to call Rob to help lift me. My arms were likewise affected. I couldn't lift more than one or two plates from the dishwasher to the cabinet. Afterwards I'd be sore as if I'd spent a day at the gym.
I was on steroids for months. Every time the doctors tried to wean them, the nausea, vomiting and diarrhea would return. Finally, we were able to wean the steroids off.
I'm not sure how far out I am now from the steroids, a couple of months I think, and I'm just now getting my strength back. I used to be so strong. I could lift and turn a patient by myself (by the way, don't do that unless you have adequate strength and a strong knowledge of body mechanics). Now I can lift four or five plates at a time and that's progress. The swelling in my face has gone down. But now I have fine wrinkles because of it. I hope those will disappear in time as well. I'm just grateful that I'm looking like myself again.
Once the intestinal symptoms were under control, I thought I was in the clear. I wasn't. A month or so after coming off my last steroid, my back started to itch. And then my chest. And then my face. I had bumps that looked like mosquito bites and initially, that's what I thought it was. I had tried to be so careful and now I had bites. When they didn't go away though, I told my nurse practitioner about them. My regular nurse practitioner. And she's pretty on top of things. She had a nurse to do a biopsy that day. She also gave me some topical cream to put on it.
The biopsy came back as folliculitis. So my nurse practitioner sent me to a dermatologist, just to be sure. That dermatologist did another biopsy. Folliculitis again. She gave me a clindamycin lotion for it. And the bumps went away. But still I itched. And my skin was so dry, no longer the soft skin I was used to.
I went back to the dermatologist to follow up. When I arrived, we discovered my doctor had gone into labor. So I saw a different doctor. He said, ‘That certainly looks like GVHD to me.’ And he called the pathologist. He also did a third biopsy. Within a few days, we got the news: GVHD of the skin. One of my worst nightmares. I had seen Google images and heard horror stories from the nurses about patients that had complete pigmentation changes. Some patients were no longer recognizable.
The dermatologist suggested several treatments but said ultimately, he wanted my oncologist to decide. My oncologist asked if my topical cream was working. I told him it was. And he told me to keep using it. Somehow, someway, the GVHD is now under control. When I get out of the shower, my skin is red and bumpy and sometimes my back itches like crazy. I put some lotion on it and it soothes it. Within about 15 minutes, my skin is almost back to normal. I can feel a difference, but I can't see it. Most people wouldn't even be able to feel the difference.
There's a lot of talk about leukemia: who has it, how to treat it, what the plan is. But you rarely hear about GVHD. And for me, that was the worst part of this battle. And I didn't talk about it. I didn't post on Facebook when I was diagnosed with intestinal GVHD. That's embarrassing. But then I got over it. Because people need to know. They need to know how hard this fight is. They need to know this battle doesn't end when the chemo is over.