February 9, 2016 was supposed to be a special birthday for me. It marked the fifth anniversary of my autologous stem cell transplant. I had outlived my initial prognosis of four years, which my oncologist had given me at diagnosis (my myeloma is considered high-risk). I had great plans for the day: a mellow cross-country ski with a friend, and coffee afterward with more friends.

However, my wonderful plans ended with me being sidetracked by my disease.

Let’s back up a bit.

I enjoyed a two-year remission after the stem cell transplant. During that period, the port that was inserted before my transplant was removed by my request. That clunky bump under my chest skin was a reminder of being very ill. When the port was pulled, I experienced hope for a myeloma-free future.

Then I relapsed. Over the past three years, I have traveled the myeloma journey through different treatment lines.

At first, the missing port was not an issue. I had great peripheral veins, and some of the medications were subcutaneous, such as Velcade ^[1] (bortezomib), and others were oral, such as Pomalyst ^[2] (pomalidomide).

The tipping point for my veins was the Kyprolis ^[3] (carfilzomib) treatment I underwent. For almost a year, I received intravenous infusions, twice a week, in a three-week-on, one-week-off treatment cycle. In addition to worsening side effects, I and my veins protested. My big, beautiful veins retreated, rolled, or collapsed with repetitive intravenous sticks. Anxiety became a frequent companion of mine with each treatment.

At the start of last month, I was once again confronting the chronicity of this disease after a much needed treatment vacation. My immuno­globulin A (IgA) was at a new high, more than 11 times the normal level, and I was anemic and immuno­suppressed. As a nurse, I could not deny the data: I still have multiple myeloma.

My husband and I consulted with my myeloma expert. He understands how I struggle to balance quality of life issues with treatment. He recommended the newly approved monoclonal antibody Empliciti ^[4] (elotuzumab) in combination with Revlimid ^[5] (lenalidomide) and dexamethasone ^[6] (Decadron). He also said the side effects might be milder than with other myeloma drugs.

So I began the new treatment at my cancer center. I started out with a one-hour infusion of Benadryl (di­phen­hydramine, an antihistamine), Pepcid (famotidine), and dexamethasone, plus oral Tylenol (aceta­mino­phen / paracetamol). All these drugs were given to prevent infusion reactions. I then received the Empliciti infusion over a long period of time (five hours) to discourage untoward reaction.

Once again, my veins protested, and the nurse observed my anxiety increasing with every additional attempt to insert the infusion.

Sometime during that first long day, the oncology nurses held a mini intervention with me and said, “Maureen, you have been receiving infusions for your multiple myeloma for over two years. You and your veins are rebelling. It is time to have a port re-inserted.”

Even though the re-insertion of a port felt like a retreat to me, I listened, and followed up with a number of questions.

Will the procedure delay the next treatment? Where will it be done?  What type of anesthesia will be used? How long is the recovery? Can I still swim with a port? 

The nurses answered all my questions. I would still receive my next infusion on time. I could have the procedure done at my local hospital, and I would not have to have general anesthesia. Recovery for exercise would just be a few days, and I could swim within two weeks.

Reluctantly, I agreed to the procedure, chose the surgeon, and departed thinking I had a least a week to get used to the idea of having a port again.

On February 8, the day before my transplant birthday, I received a phone call late in the afternoon. I was expected to be at the hospital at 8:30 a.m. the following morning for the re-insertion of the port.

What? I wanted to celebrate my transplant birthday. And, adding insult to injury, there was to be no coffee before the procedure. No breakfast either. What a disappointment. No celebration on February 9. I was not brave or graceful that evening. I was resentful and not much fun to be with.

My youngest son made sure I got to the hospital on time, and, with an angry heart, I followed all the rules.

After all my angst, the procedure went smoothly. I was a happy drunk with Versed (midazolam) and fentanyl. The nurses reported that I stopped talking mid-sentence with a smile on my face. The surgeon has inserted thousands of ports, and the procedure was completed without a hitch.

All the oncology nurses’ promises came true; 48 hours later, the port was accessed painlessly for my second long Empliciti infusion. I was more mobile with both hands free and much less anxious.

The same nurse who assisted with the port placement came to the cancer center to learn how to access ports. So I encouraged him to practice on me. Yes, even as a patient, it is important to me to be a teacher and a nurse.

I was definitely sore for 48 hours – so no spinning or cross country skiing for me. Ten days later, the surgeon gave me permission to swim. The port remains lumpy, with colorful bruises around the insertion area. No strapless dresses for now. (Oh wait; I never wear strapless dresses anyway.)

The day after the port procedure, I read of Pat Killingworth’s death. The news hit me like a punch in my gut. I counted on his optimism, his courage to reflect on difficult topics. His last column, “Dare I Dream Again? ^[7]” could be a motto for any multiple myeloma patient.

Then reality struck me. I did not have the worst birthday ever because I am alive. To honor Pat’s life, I want to appreciate my aliveness and stop whining. The port is not a retreat. It’s another ally in my journey to stay active, stay creative, and stay alive.

And the story of the port and the “worst ever” birthday has another, much better ending.

The following Saturday, my friends and I participated in a snow shoe race in Redstone, Colorado. The day was glorious, sunny with a cloudless blue sky. The course followed the Crystal River into the woods, contrasting white unmarked snow with the deep red stone bluffs. At the finish, I was again last, my new favorite position. It didn’t matter. I experienced several moments of piercing joy at the wonder of the outdoors. Being outside with friends – what could be better?

At lunch, friends surprised me with a tiara and five balloons to celebrate the five-year birthday.   For me, this stem cell birthday became a proud celebration of a tough journey. I celebrated being alive surrounded by the love of my family and friends.