Induction Chemotherapy

May 2012 thru June 2012

Part of Research

Before starting treatment, I participated in a cancer clinical trial. I have always believed in helping others, and I wanted to contribute in any way I could for future cancer patients. Clinical trials are research studies designed to find better ways to treat cancer. They usually go through many phases before becoming standard treatment.

There were two possible treatments in this trial: the standard treatment or FLAM. A computer system randomly selected which treatment I would receive. After the paperwork was completed, I was assigned to the standard treatment, known as 7+3. That meant seven days of Cytarabine (ara-C) and three days of Idarubicin.

Since I was not assigned to the FLAM treatment, I will not go into detail about it. Even with the standard treatment, I remained part of the clinical trial. I provided additional blood and bone marrow samples, and researchers closely tracked my progress. They told me they would likely follow up with me for many years to keep the data updated.

Hospital Protocol

I had to undergo another bone marrow biopsy on May 14.

Uh?!? I had just gone through one not long ago.

The research nurse explained that it was hospital protocol. I had to have a biopsy done immediately before starting induction chemotherapy. Otherwise, I would be removed from the clinical trial.

Ugh.

Thankfully, Dr. Schweizer performed it again. He was gentle and careful.

It still hurt. Bone marrow biopsies were never easy for me.

That was biopsy number five.

Hickman Catheter

I received a Hickman catheter on May 16.

It is a central venous catheter used for administering chemotherapy, medications, and blood products. It can also be used to draw blood for daily lab checks. The tube entered through the upper right side of my chest, tunneled under the skin, went over my collarbone, and into a large vein that led directly to just above my heart.

Nope, it did not hurt at all.

I was actually glad to have it. It meant fewer needle sticks in my arms.

On that same day, we worked on my will, decisions about where to dispose of my body, and completed an advance directive. Those documents were required before starting treatment.

I had no idea how much work they would be. It felt like a full-time job trying to finalize everything at the last minute.

I am sure many of you have not done these yet. I suggest you take care of them sooner rather than later. Be realistic. Anything can happen to anyone.

Poisons

Early in the morning on May 17, I received chemotherapy for the first time. The drugs were Cytarabine, known as ara-C, and Idarubicin.

They called them “poisons.”

They were so toxic that no one was allowed to touch the chemotherapy drugs with bare hands.

Surprisingly, I did not feel much at first. I was also given several medications to prevent common side effects that other patients had experienced before me.

For example, I used Fluorometholone eye drops to prevent my eyes from swelling. I took Allopurinol to prevent gout attacks and kidney problems. I was given anti-nausea medications to prevent vomiting.

Reading about all the possible side effects from the chemotherapy and the other medications was overwhelming.

Damned if I do. Damned if I do not.

Without treatment, I would only have weeks. With treatment, I had a chance.

I chose the poisons.

I was grateful for the pre-medications. Many patients before me had experienced far worse side effects. That is what clinical trials are about, finding better ways to treat cancer for future patients.

Thirty to Forty Days

I was told it would take around 30 to 40 days.

I assumed everything, including the bone marrow transplant, would be finished within 40 days. I thought I would go home, recover, and return to my normal life. I even told my boss I would be back to work in a few days.

I was wrong.

The induction chemotherapy alone would take 30 to 40 days just for my blood counts to recover enough for the next phase of treatment.

When I realized that the full recovery could take anywhere from six months to two years, I was almost devastated.

But there was no alternative.

So I decided to stay positive. I kept myself busy during my hospital stay. I walked the hallways. I worked on art projects. I did whatever I could to keep moving forward.

Rashes and Fever

Shortly after starting chemotherapy, I developed severe rashes and a persistent fever. This continued for nearly two weeks.

The rashes were painful and extremely itchy. Thankfully, a sauna lotion worked very well for me. It stopped the itching almost immediately when I applied it.

The fever ranged between 102 and 104 degrees Fahrenheit. Oddly, the fever itself did not bother me as much as the night sweats. I would wake up completely drenched and have to call the nurse to change the bed sheets.

Sometimes once. Sometimes twice a night.

The doctors ran multiple blood cultures but could not find a clear source of infection. All results came back negative. They suspected either an infected hair follicle on my lower leg or an allergic reaction to one of the medications.

“We are watching you closely and carefully,” the team told me daily.

Nadir

My blood counts continued to drop. Red cells. Platelets. White cells. All of them.

My hair started to fall out.

The doctors told me this meant the chemotherapy was working. The drugs were destroying the leukemia cells, but they were also wiping out my healthy bone marrow.

My red cells and platelets could not be allowed to reach zero. This lowest point was called the nadir.

That was when blood and platelet transfusions became necessary to keep my levels high enough to survive.

At that point, I truly understood how important blood donors are.

Without donated blood and platelets, how would someone like me survive?

Please donate blood. You never know whose life you may be helping.

Because my white blood cell count dropped so low, I had to take preventive medications: antivirals, antifungals, and antibiotics.

Even with all of that, I still developed infections from bacteria already inside my own body.

Hallucinations

I took Voriconazole for the first time. It is an antifungal medication that works by blocking fungal cell wall growth, resulting in the death of the fungus.

I was warned it could cause hallucinations. Seeing colors, lights, or things that were not really there.

Okay. No problem.

I took it twice a day for two days. Nothing happened. I even teased my mom and told her she had a pink spot on her face. She walked toward the restroom to check. Before she got there, she realized I was teasing her. I thought it was funny.

It stopped being funny the next night.

When I closed my eyes, I saw pastel colors floating around my room. With the lights on and my eyes open, everything was normal. But whenever I turned the lights off or closed my eyes, I saw bright colors, strange lights, and patterns that were not there.

I told the nurse. “That will go away soon,” she said.

It did not.

The lights became more intense. Whenever I closed my eyes, it felt like I was watching high-budget special effects from a movie. Galaxies. Bright suns. Millions of stars. Everything in extreme detail.

I tried to outsmart it. If I saw a sun, I imagined flying far away from it, beyond the universe, into total darkness.

For a moment, it worked.

Then a bright galaxy would sweep across my vision again.

Nothing would stay dark.

I stayed awake for hours after each dose just to avoid closing my eyes. That completely disrupted my sleep.

The doctors and nurses began asking why I was sleeping during the day. I explained that I had been awake most of the night because of Voriconazole. They kept saying it would go away soon.

It lasted several days.

One time, while I was showering, I thought I saw someone in my bathroom. I checked. No one was there. It happened again. I finally just said, “Vori,” and ignored it.

Another night, I turned off the lights and saw the clock moving quickly and choppily. I turned the lights back on. It was frozen at 3:02 a.m. Lights off again, it raced forward. Lights on, frozen at 3:03 a.m.

That was enough.

I went to the nurse’s station and asked if there was anything they could do about the lights.

The nurse stared at me for a moment and said, “No.”

He placed a “delirium” warning sign on my door and gave me a memory test.

I passed easily. My eyes were open and the lights were on.

The sign came down shortly afterward.

The next morning, they switched me from Voriconazole to IV AmBisome.

No more hallucinations.

I finally slept with the lights off and my eyes closed.

Mucositis

I developed mucositis in the back of my mouth.

Thankfully, it did not spread through my entire gastrointestinal tract. I cannot imagine how painful that would have been.

At the same time, the lymph node on the right side below my ear became swollen. That made it difficult to eat or swallow.

The medications they gave me did not help much.

One morning, after several frustrating days, I discovered a simple solution. I plugged one of my fingers into my right ear while eating or drinking.

It worked.

No pain.

I showed the team doctors. They could not believe that something so simple helped more than medication.

Just a finger, not a drug.

Exercise

Because of the Hickman catheter, the only exercise I could safely do in the hospital was walking the hallways in my unit.

They told me it was 26 laps per mile.

To pass the time, I measured the hallway myself using the floor tiles. Each tile was 12 by 12 inches. Close enough. It turned out not to be exactly 26 laps, so I walked a little extra just to make sure I completed a full mile.

In 29 days, I walked a total of 55 miles.

I missed only one day.

Yes, I even walked when I did not feel well most of the time.

Hey, I probably walked more than most of you do on your best days anyway!

Another Biopsy

On Day 14 after starting chemotherapy, I had another bone marrow biopsy.

Number six.

This one was performed by one of the less experienced doctors.

It was very, very painful.

I received double doses of morphine, and it did not help at all. He inserted the large needle into my hip bone and struggled to draw out the stem cells. He pulled the needle out and tried again in a different spot.

Twice.

More pain.

Eventually, he obtained the samples they needed.

I told him he should consider working as a medieval torturer.

He did not look amused.

“See you tomorrow. I’ll be doing the biopsy on you too,” I said with a grumpy face.

“I’m sorry. Today is my last day on this rotation,” he replied.

Oh. So that is why he was okay with torturing me. It was his last day with me.

Later that night, I complained to the lead doctor. She explained that after chemotherapy, my bone marrow had essentially been wiped out. It was like trying to draw fluid from an empty sponge. That was why it was so difficult and painful.

I understood the explanation.

But still.

He was not that good.

If I had a time machine, I would send him back to medieval times anyway.

sigh

Honestly, I felt a little bad afterward for what I said to him. I stopped complaining and tried to focus on staying positive.

Remission

A few days later, the results from the biopsy came back.

There was no residual leukemia found in my bone marrow.

That was good news.

The doctors reminded me that the biopsy sample represented only a very small portion of my body. Cancer cells could still be present elsewhere. But based on what they saw in the biopsy and in my blood work, there was no detectable leukemia.

I was in remission.

Homesick

It took almost two weeks for my blood counts to rise above the minimum levels.

I began to feel better, but I still had to remain in the hospital for another week. I missed home-cooked meals, so Jolynn and my mom brought food from home. I missed walking outside. I missed normal life.

It was rare for me to feel homesick, but this time I did.

I had been admitted suddenly and completely unprepared. The doctors wanted to make sure I was free of infections and had no fever before sending me home.

On June 14, I was discharged.

Thirty days.

Late June

After I was discharged, I was still extremely tired and slept a lot. I struggled to stay active.

We returned to Johns Hopkins several times a week for follow-up appointments. My doctor and nurses kept reminding me that I needed to exercise.

So I kept walking and tried to do something productive instead of sleeping all day.

As many of you know, I love art. On June 23, I went to Artomatic.

That might have been overly ambitious.

I managed to complete only the top half of the building before running out of energy. We returned the next day to finish the bottom half. It turned into two full days of exercise.

After that weekend, I began to feel slightly better. I slept less and started doing more.

I completed a painting project. It should have taken me one easy evening, but instead it took an entire week. I could not stay focused for long periods of time.

Recovery was slower than I expected.

Bone Marrow Donors

The bone marrow transplant team sent a blood test kit to my brother to see if he was a match.

Unfortunately, he was not.

The transplant team then identified three matched unrelated donors from the national registry.

My doctor said, “Three matches? That is really good. If there were only one or none, I would be worried. It is not easy to find matches.”

Not easy to find?

Then why not register and donate for someone else like me?

Please consider joining the National Marrow Donor Program at https://www.nmdp.org.

What is the difference between a matched sibling donor and a matched unrelated donor?

If my brother had matched, the risk of complications would have been lower. With a matched unrelated donor, the risks are slightly higher.

It was not ideal, but it was what I had.

I was ready for the transplant.

More Poisons

At my appointment with Dr. Schweizer on June 22, I learned that the transplant was not nearly ready. It was tentatively scheduled for late August.

I was surprised.

I also learned that I would need another round of chemotherapy in July. This was called consolidation chemotherapy.

The goal was to destroy any remaining leukemia cells or keep them under control while I waited for the transplant.

My doctor assured me that I would be in the hospital for only seven days.

Only seven days?

That did not sound bad at all.

I figured I would be back home quickly and working on my second art project in no time.

Complete Remission

On June 26, I returned to Johns Hopkins for bone marrow biopsy number seven.

Because of my experience with the previous biopsy, I was already very nervous before I even arrived at the hospital.

When I entered the room and prepared to lie down, I could feel myself trembling. My body became stiff.

Bad idea.

That only made it more painful.

Dr. Schweizer told me that next time I should take anti-anxiety medication beforehand.

A few days later, the results came back.

There was no residual leukemia found.

It was worth the anxiety and the pain.

I was in complete remission and ready for the next treatment in July.