My New Abnormal

June 6, 2020

One day my life changed. I met someone… someone special. But I get ahead of myself.

One day my life changed. I met someone… someone special. But I get ahead of myself.

My life had been changing before that day, more than I knew. It was Fall 2014. Suzie Cream Cheese here waltzed into the doctor's office (more like stumbled), thanking him for seeing me and expressing appreciation for his internal medicine and hematology skills, and that I, thankfully, did not need his oncology services. But, I felt terrible. "Crappy" was my word for it. I was quickly and quietly slipping away . . . dying. I knew it.

It was peaceful, but I did not want to die. Prior medical tests had been completed only with lengthy delays and with what seemed like interminable, flimsy excuses. I was frustrated beyond my limits of frustration. Now it was already the day before Thanksgiving, and I was pissed, even rude. Apologizing for my rudeness, I said "Doctor, I need help and I need it now. I am dying, and I don't care what holiday it is or what other people's schedules or plans are. I need help now!" Looking me firmly in the eye and yet with kindness, he said "I will help you, and I will help you now." With that, he picked up the phone to the lab across the street and said, "I am sending you a patient, now, and I want these tests done . . . now." Tests were done, and then the verdict came. Oops. Major problem. Multiple Myeloma. Suzie Cream Cheese melted.

Gradually absorbing this new information, shakily, I agreed to begin treatment under his capable guidance. Yet, with his vast contacts, I suggested that if he knew specific resources anywhere in the US, pertinent to my situation, I wanted to know. My will to survive and my fighting spirit were rising up. Once again, he picked up the phone, that magical phone. This call was direct to the Director of a private Institute in the Los Angeles area, specializing in myeloma and other bone cancers. "Doctor, I have a patient who I think will qualify and benefit from your Elotuzumab trial." And thus, the saga began. After numerous trips back and forth from my home in Ventura to the Institute, after agonizing weeks of further testing, of being rushed to Cedars Sinai for emergency blood transfusions, I won the prize…I qualified.

Treatment was scheduled for January 15, 2015. I felt horrible, beyond crappy. Where was my usual healthy, athletic and energetic self? And treatment infusions were to be once a week for eight weeks, and then every other week… for life?!! There's a mistake here. I'm healthy. I don't do sick. I don't do drugs. And there's no cure for this cancer? And it's a devastating killer? How do I grapple with all that? Get this beast out of me!

At long last, the day of all days arrived, January 15, 2015. Commencement. Not the end, but the beginning. It was the day for the first infusion. This can't be. I am a Southern California outdoor girl— camping, hiking, horseback riding, swimming, tennis, wind in my hair and sunshine on my face. Healthy, and from three generations of capable doctors in the family… grandfather, father, and brother. We all do health, not sickness. But here I am, slouched and crumpled in the waiting room of the Institute, about to go down the hall to my first infusion.

I am so petrified that I can neither move my feet nor turn my head to look down that long hall leading to the Room. Broken and Frozen. Despite attending college in the 1960s, I never used drugs. Take anything out of me, but don't put toxic drugs into me! Now I was between a rock and a hard spot: I don't want the drugs, but if I don't have them, I'll die. And I don't want to die. It's not my time to die. Of that, I am sure. Jesus Lord, please help me. I am in trouble. I can't do this. I can't get my feet to work. I can't walk down that hall. I just can't do toxic drugs. And then, something completely unanticipated and extraordinary happened.

In the midst of my silent, prayerful caterwauling, unexpectedly and astonishingly, I felt that Jesus appeared right in front of me. Stunned, I was riveted by Him. Everything in the room faded in the presence of his glorious Being, shining in white robes, tall, strong, commanding, magnificent . . . silent . . . with only the office fish tank, gurgling behind Him. His face was a blur, but captivating strength and power emanated from Him. I was startled and shocked, but not afraid. Not a word was spoken. Somehow, with no words spoken, I received His clear messages of assurance. They came in four, distinct parts: "Phyllis," "I love you," "I have you in the palm of My hand," "I will be with you every step of the way." With that, He gently faded from my awareness.

Breathless, I realized that every part of His assurance was intensely personal and scriptural. Of course, He's God. He speaks only The Truth, in love. And just as Jesus countered the temptations of Satan in the wilderness with the words "it is written", so too here: He called me by name. It is written: "The Lord knows those who are his." (2 Tim 2:19). He said He loves me. It is written: "He who loves me will be loved by my Father, and I too will love him and show myself to him." (John 14:21), (3) He said He holds me in His hand. It is written: "If the Lord delights in a man's way, he makes his steps firm; though he may stumble, he will not fall, for the Lord upholds him with his hand." (Ps 37:23-24), and He will be with me. It is written: "I will never leave you nor forsake you." (Jos 1:5) I then stood up and with strength, not of my own, I walked down the hall to the infusion room for the first treatment.

That was close to 150 infusions ago— and counting.


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