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Pat’s Place: I’m Home!

By: Pat Killingsworth; Published: August 10, 2015 @ 4:30 pm | Comments Disabled

It’s been 37 long, hard days away from home for my salvage transplant. The good news: I’m home early!

I left last week facing a very difficult decision: Should I take my specialist’s advice and move forward with a second, tandem, stem cell transplant?

My doctor felt if the first one didn’t work, well, skip the second transplant. But if the one I just had got most, or all, of my myeloma, crush it with a second transplant.

“Don’t make a decision now,” he told me and my wife Pattie at our meet­ing on July 28. “Come back in five weeks. We’ll do a follow-up bone mar­row biopsy, PET scan, brain MRI, and bloodwork and see where we stand.”

Pattie and I agreed to wait. Our minds were already out the door. To be flying home in July, when I had orig­i­nally made plane reservations for August 14, seemed like a miracle.

But I’m getting ahead of myself. Just because things went better than anticipated didn’t mean there wasn’t any drama. Can you say antibiotic-resistant infection?

Although I was technically an outpatient, I found myself hospitalized in the transplant unit twice; the first time for three days, then, four days later, I was back for an 11-day stay.

Why? The first time, I was dehydrated. The second time, I had an antibiotic-resistant infection.

I had a twin catheter surgically implanted in my neck for stem cell collection. That was removed about the time my larger, fancier Xcela Power Injectable Port was put into the right side of my chest. Unfortunately, the insertion point quickly became infected. So did my fancy chest port. It took 45 minutes to put in and 45 min­utes to dig it out.

The same doctor placed and removed both lines. He did a great job on the chest port; no infection there. But the infection in my neck would haunt me for three weeks, requiring daily infusions of Cubicin (daptomycin), an antibiotic specifically designed to battle my type of bacterial infection. All subsequent cultures tested negative, and so far, so good. It seems like my neck is healing up on its own since I had my last Cubicin infusion on Sunday.

I endured chronic diarrhea for three full weeks. For several weeks I ran a fever and hallucinated – wild, crazy dreams. I would fall asleep on a moment’s notice, imagining all sizes and colors of gnomes and mythical an­i­mals. I would see myself walking around the room when, in fact, I was still sitting or lying in bed.

One of the most difficult parts of the process for me has always been the nausea. I had several meetings with my transplant team to get a better feel for what to expect. The team came up with several innovative, rarely used drugs that helped a lot. I was also more relaxed this time around. I think that helped quell any stress-based nausea like I experienced during my first transplant in 2011.

Another dreaded part of undergoing a stem cell transplant for me: not feeling like myself, and not being able to think clearly. In other words, being “out of it.”

Fortunately, I only lost half dozen days that way. If I compare my latest transplant experience to my first, this one was much, much easier. Still no fun nor tolerable (I hate when physicians use that word), but I feel like I only lost a month of my life.

I’m recovering more quickly, too. I credit that to being infused with more than twice the stem cells, along with well-timed Neulasta (pegfilgrastim) and Aranesp (darbepoetin alfa) injections. These medications have helped boost my white cell and platelet counts to well above where they were pre-transplant. My hemoglobin is still a bit low, but that’s coming up, too.

All good news. And I have some more. I don’t feel any pain throughout my body any more.

During the transplant, the tumor in my skull above my neck was painful. So were my upper neck, lower back, the lesion in my left femur, and several spots in my ribs. I now believe that was caused by the chemotherapy attacking those areas. Plus, retaining 11 pounds of water probably didn’t help.

Now that a month has passed since the transplant, I have no pain in any of those areas. No pain. I know my body pretty well after over eight years dealing with my cancer. I think this is a good sign.

This was a salvage stem cell transplant – a Hail Mary. I gambled. If it helps, I win. But, because I’m a non­secretor, I won’t have any definitive news until I return to the transplant center the week after Labor Day. Wish me luck!

Feel good and keep smiling!

Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of all his columns here [1].

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