The 12 O'clock Appointment

My last post was on day minus four. That meant there were four more days until my stem cell transplant. Today, as the title says, is day plus 35, meaning I am 35 days post-transplant. The day of transplant is considered day zero, and every day just before transplant is considered day minus, and every day after is called day plus. Day plus one, day plus two and so on.

At 35 days after transplant, life looks quite different. I was hesitant to write about the stem cell process and all it entails, because I like to be positive in my writing. I told Brian I wasn’t sure I wanted to write about the actual stem cell process. It was difficult and I didn’t want to tell that part of the story. He said I wasn’t being truthful if I didn’t write about the difficult part. Considering his input, I will talk about transplant so far, in the just over two weeks since I have been discharged from the hospital.

I begin by praising the staff in the hospital. The nurses, the environmental services staff (one, in particular, was a delight and Brian and I enjoyed his visits every day), and the amazing doctors who treated me. I am grateful to have had such kind and knowledgeable people to come alongside me for my transplant. When I was at my weakest and most fragile, my nurses knew just how I felt and they encouraged me by saying I was right where I was supposed to be on my treatment regimen. Their kind words assured me that I was in good hands, and as a result, not long after my admission, I surrendered control and let the professionals take care of me.

Once I was settled in my hospital bed, the infusions through my port began. On some days, there were nine bags of fluids and medicines hanging from my IV pole, waiting their turn to be infused. Within days, the swelling appeared from all the fluids. Soon my ankles, feet and toes did not look like my ankles, feet and toes at all. They looked like water balloons to me. My legs grew in size and the ease of moving in the bed, or getting up to shower grew harder. My hands swelled to where even holding my phone was a job.

Then came the mucositis. I noticed a small ulcer in my mouth, which was something the staff told me I could expect. Soon the ulcer got worse and that began a little over two weeks of being unable to speak clearly. Consequently, I had no appetite and was constantly clearing my throat. Constantly. Day and night. It was miserable. Then fatigue arrived and just taking a shower was an enormous undertaking.

Each day, however, the staff told me I was on target and everything that was happening was normal and expected. That comforted me. Again, their support gave me the hope that my current circumstances would one day pass, and soon I would feel like me again. Their words proved to be true.

Brian, bless him, was with me almost every minute except to go to the apartment we temporarily rented to wash his clothes and shower. He is my biggest support and encouragement. During my admission, we prayed together, read, he studied his classes online and he slept on the large sofa in the room every night. He got me juice, ice, popsicles, grits, crackers and anything I needed, but mostly, he was there. It was enormously comforting to have him with me. The job of being a caregiver is both loving and exhausting at the same time. Watching a loved one suffer in any way can pull at your heart, your emotions and your strength. God bless the caregiver.

When the day finally came to be discharged, they put me in a chair and took me to ‘the bell’. I got out of the chair and grabbed the rope on the bell, I looked at Brian and said, “Does this look familiar?” (He rang the bell three years earlier). The nurse said to ring it loud, so I clanged that bell and the sound reverberated across the whole floor, sending hope through the closed doors of the other 29 stem cell patients. I hoped to reassure each person that they too would one day ring the bell and get back to the life they knew before someone strapped a white band around their wrist identifying them as an inpatient. It was a surreal moment to hold that rope and ring that bell, knowing I was ringing it for me.

Once I left the hospital and settled into our temporary apartment, my new schedule began. I organized my meds and created a calendar for which days I do what. At this point, the allogeneic stem cell patient (one who received donor cells), begins a life of washing hands, spraying bleach on can openers, washing cans before you open them, eating frozen foods and avoiding anything raw or food that is left out in the open like you see at some restaurants. You sanitize and stay as diligent as you can because now is the time you watch for GVHD, or graft versus host disease. It shows up in a variety of ways, but the first is a rash on your upper body.

My schedule now includes checking into the clinic twice a week where they draw blood from my port and then I see the doctor. During each visit, they ask if I have seen a rash anywhere on my body. I have answered no on every clinic visit except today’s. This morning, the dreaded rash appeared, so we left the clinic with three new meds.

On the positive side, I am grateful for God’s watch care over every step of this procedure. I am grateful that there is technology that allows me to receive stem cells. I am grateful that my hospital windowsill was filled with cards from friends. This is a difficult journey. The doctor said initially that they were going to beat me up, then babysit me. I remember asking him one day when the babysitting started because they had done enough beating. He smiled and said, “A few more days”.

During my admission, if I was up to it, Brian and I walked our laps around the floor, and we passed the 29 other rooms with stem cell patients inside and it reassured me that I was not on this road alone. I prayed over each door we passed since I knew what they were all going through.

Is this easy? No. Does the Lord ask you to do things sometimes, even later in your life, that you never expected? For me he did, and it has opened my eyes to the suffering of others as I never would have known before my diagnosis.

At my very first chemo treatment, an image came to mind of a rose with a petal that was falling off it. During the consecutive doctor visits and treatments, the image remained. At each visit another petal fell away from the rose. I soon realized God was teaching me something. What was it, I wondered? I sensed this flower was an image of me and all the externals I employed in my life to make myself presentable and comfortable in public. I marshalled enough courage one day to ask myself, what would remain of me if, or when, all the petals fell off the flower? What would I find if all the externals were removed? What was I truly standing on as my foundation if everything I added was removed?

As I write this, I have no hair, a port in my chest, my taste buds are still vacationing and I have added a long list of medication to my day’s routine. The petals have pretty much fallen off, and what I am serenely happy to report is that my foundation rests on the Ancient of Days, the God of heaven’s armies, the Lamb of God who takes away the sin of the world, the “Rose” of Sharon.

With this confidence, I look toward the future that God has for Brian and I as we strive to live out our senior years in service to him.

Proverbs 92:14, “They will still yield fruit in their old age.”