Consolidation Chemotherapy

July 2012 thru August 2012

HiDAC

While still being evaluated for a matched unrelated donor transplant, I was re-admitted on July 8 for consolidation chemotherapy with high-dose ara-C, known as HiDAC.

Because of the high dose, I had to pass cerebellar and neurotoxicity checks before each treatment. Twice a day, I demonstrated rapid hand movements, wrote my signature, completed simple coordination tests, and walked so the doctors could evaluate my gait.

If I failed any of those tests, the chemotherapy would be stopped.

I passed them all.

The only pre-medications I needed were fluorometholone steroid eye drops and anti-nausea medication. As with the previous treatment, I also took antiviral, antifungal, and antibacterial medications.

Unprepared Again

I was not prepared for this hospital stay for a different reason.

I had packed enough for only seven days. Much less than what I packed for the first stay.

My team doctors all agreed it was not safe to send me home after seven days.

What?!?

What did they see that I could not go home?

They did not tell me exactly why. I assumed it might be because I was part of the clinical trial and they wanted to monitor me closely. Or maybe it was because of complications from the first treatment.

I had no idea.

sigh

Poor Jolynn. She had to gather more of my things and bring them to the hospital for me.

She was so sweet.

Bugs

With daily checkups, the team closely monitored my blood counts and watched for infections.

On July 17, I was diagnosed with Serratia marcescens in my gut. Because of that, anyone who visited me had to wear a mask and gown.

I felt bad for my family and friends. I could see how uncomfortable they were, sweating under the gowns and masks. Meanwhile, I was freezing most of the time, even with the room temperature turned up.

Then on July 23, they found a colony of MRSA in my nose.

Because of these infections, I was placed back on IV Vancomycin.

IV Vancomycin Allergy

That was when I discovered I had a severe allergy to IV Vancomycin.

They called it Red Man Syndrome.

I developed a red rash all over my body, mostly on my legs and torso, along with high fevers. It felt exactly like what I experienced during my first treatment in May.

Two full weeks of rashes and fever.

This time, I told the team doctors it was the same pattern as before. They recognized it quickly and switched me to a different medication.

I recovered much faster.

No more fever. No more rashes.

Boredom

Because I had to stay longer than seven days and had not packed for a long stay, I became very bored. I complained to the team doctors almost every morning.

They refused to send me home.

What?!?

They explained that they did not want anything to happen if I was discharged too early before my counts recovered to safe levels.

So I walked even more than during my first stay in May and June. I kept myself busy by taking pictures and videos. I teased the nurses and doctors constantly, day and night. I worked on drawings, read magazines, and played cards like solitaire.

My interpreter overheard some doctors talking about how bored I was and how sorry they felt for me. Still, my attending doctors would not send me home.

I did not know exactly why.

But at least I was being taken care of very well.

Transfusions

Even when I felt all right, I still needed blood and platelet transfusions to keep my counts at safe levels.

For the second time, I found myself thinking about what would happen if there were no blood donors.

Thank goodness there are people willing to donate their blood to save lives.

I never fully understood how important blood donation was until I needed multiple transfusions during both hospital stays in May and July.

And I knew I would likely need many more during the transplant.

No matter what your blood type is, please consider donating blood.

Loopy Walk

During this stay, I walked more than 80 miles in 27 days, skipping only the last day on August 3.

I called it my “loopy walk” because all I could do was circle the hallways of the unit over and over again.

Around and around.

I am sure some people thought I was crazy.

But I was in good shape.

Probably even better than some of you, right?

Scheduled for Transplant

While still in the hospital, I met with a coordinator from the bone marrow transplant team. She gave me a strict schedule to follow in order to meet all requirements for a stem cell transplant on my birthday, August 21.

No, they did not plan it that way on purpose.

I was excited. It was really happening, and the wait did not seem that long. I had heard that some patients wait a very long time for a transplant.

Then I looked at the schedule.

Uh.

Not again?!?

Another bone marrow biopsy on August 7.

That would be number eight.

“Well, no problem. Dr. Schweizer will know what to do,” I told myself.

On my last day in the hospital, August 3, I completed several required tests, including a pulmonary function test and a transthoracic echocardiogram.

I already knew I would pass them easily.

That was another reason I walked so many miles.

Still a nut? Nah.

Easier

I felt that consolidation chemotherapy was easier than induction chemotherapy, even with the high-dose ara-C.

Yes, there were rough moments, but I had already begun to forget how difficult the first round had been.

I told myself that since I managed both induction and consolidation chemotherapy, the next cycle should be easier.

At least now I knew what to expect and how to handle it.

I also knew which medications I was allergic to.

My blood counts recovered quickly this time.

I survived again and was discharged after 27 days.

I went home on August 3.

Losing Weight

I weighed around 165 pounds and was still losing weight.

The doctors ordered me to eat anything I wanted, including high-fat and high-sugar foods. So I did.

I ate donuts and ice cream. I ordered cheeseburgers with vanilla shakes several times. I ate a lot of potatoes.

Still, I either stayed the same weight or lost a little more.

They wanted me to gain as much weight as possible before the transplant.

How?

I ate five to seven meals a day. I ate like a pig and did not gain anything.

What kind of powerful “chemo diet” was this?

Biopsy Again

As before, I returned to Johns Hopkins almost daily for lab checks.

On August 7, I felt nervous again, though not as much as the previous time. I assumed Dr. Schweizer would be performing the biopsy.

I was wrong.

A different doctor, Valerie, introduced herself. I cannot remember her last name. I asked where Dr. Schweizer was. She told me he could not make it and that I should not worry.

I explained what had happened during my previous biopsy.

She confidently told me she was older and more experienced.

She gave me a dose of Ativan about thirty minutes before the procedure.

It did not seem to work.

She gave me another dose and waited a little longer.

Still nothing.

I finally told her to just go ahead and get it over with.

She did.

It was fast. Much faster than my previous biopsies.

The only pain I felt was from the numbing injections and when she drew the stem cells from my bone marrow.

That was it.

Quick pain. Over quickly.

I was not sure which I preferred. A short burst of sharp pain or a long, drawn-out steady one.

Either way, this one was manageable.

Informally Report

The next day, I met with Dr. Schweizer after the biopsy.

He asked how it went. I told him it seemed better this time.

Then I mentioned what Valerie had said about him being young and inexperienced.

He chuckled.

I realized I liked her approach. Quick and efficient.

He then told me that my biopsy had been reviewed with Dr. Gore and showed no obvious signs of residual erythroleukemia. It still needed formal review by pathology, but so far everything looked good.

Since May 14, each biopsy had shown complete remission.

That was good news.

Risks

Dr. Schweizer spent a long time reviewing the rationale for transplant in AML and the potential complications.

He explained the risks, including vaso-occlusive disease of the liver, infectious complications, graft-versus-host disease, and death.

I understood the seriousness of what could happen.

I told him I was prepared.

In truth, I did not really have a choice.

If the transplant offered the best chance to stay alive, then I would go through with it.

Dental Work

On August 13, I saw a dentist as part of the transplant requirements.

If I developed an infection in my teeth, it could spread quickly and cause serious complications. Dr. Gore had warned me that if I had a tooth abscess, it would be pulled immediately.

Fortunately, I did not lose any teeth.

I already knew I had a small cavity and a worn-out filling. The dentist repaired both with new fillings and cleaned the rest of my teeth.

I was cleared.

I was ready for the transplant.