Following my heart

April 14, 2011: Dark and early this morning, Mom and I head out for the Huntsman Cancer Institute for my appointment with Dr. Ken Grossmann. Sweet Lindsey beats us there by about five minutes. It is snowing, blowing, spitting hail. My stomach is churning. I so long to be comforted by today's doctor visit.

Valet parking is a blessing in a place that seems to be constantly under construction. Not having "Travis" (who worked so patiently with me over the phone when I was setting up this appointment) escort me through the maze and long halls to Clinic C on the 2nd floor, as promised, makes me nervous. Having the nurses and receptionists rush through my check-in to try to keep to schedule gives me stress. The lab draws three vials of blood. I am weighed (which comes out in kilograms to make me feel better, I think) and taken to a room - me and my wonderful "L" team of Lois and Linds.

Nurse Carolyn goes through my story, which she reviews with me for accuracy. I'm amazed at her efficiency. I undress for another head to toe exam and am appalled at my hairy "winter" legs - wish I had taken a minute last night to shave. Too late now - they're on display for all to see. We talk about prior moles I may have had, and I think to mention one I had removed about 25 years ago, which is the first time I think I've talked about it to anyone outside of my family. Why remember it now? I guess to reaffirm that it has no effect on what is happening to me now.

Finally, Dr. Grossmann comes in with another nurse, Karen, who will "take notes" for us so that all we have to do is listen. He is not at all what I expected - he wears a sports jacket and has a funny little bow-tie. He is young and has warm, brown eyes behind his stylish glasses. He, too, goes through my story, and now he knows me, quite intensely.

He then begins to tell me about the available options for treatment. He starts to talk about interferon, which immediately makes my skin prickle. Early on (the very day I was diagnosed), Dr. Bradley and Dr. Robison both expressed their dislike of the side effects of the drug, and later my friend, Judy Terry, told me about her experiences with interferon. I want to stop up my ears, but Dr. Grossmann gives facts, statistics, results of case studies, and tons of information that quite literally send me reeling. The bottom line is this:

*Interferon is administered in high, heavy doses for one month, which brings flu-like side effects: vomiting, fever, chills, fatigue, headache, etc. "Now, we can get you through this," he says. "We can do one month." BUT...

*After the initial month of treatment, then comes "maintenance", which lasts for ONE YEAR...and during that year, you continue to experience the flu-like symptoms. "Some patients have such a decrease of quality of life that they can't work, they become depressed, and some have even committed suicide." Can you imagine feeling like you have the flu for a whole year? It makes me sick just thinking about it.

*Case studies from people taking interferon for melanoma are inclusive. Of course, some people react favorably to the treatment (Judy Terry, for one) and have no regression. Others see no improvement, even after the year of maintenance. In other words, there is no real proof that interferon will increase survival of melanoma - but there is plenty of proof that it will cause a lot of suffering while it is meant to heal.

Dr. Grossmann looks me in the eyes. "I want to give you the choice of whether or not you want to have this treatment," he says. "But I want you to choose with your heart and not your brain. If you are the sort of person who is looking at this situation and saying, I want to do everything - no matter what - to survive melanoma, then you should do it. If somewhere down the line you think you'll have any sort of regret of not taking interferon to improve your survival chances, you should do it. But if your heart is telling you that this is not the path for you, you should listen. It has to be something you want to do, no matter the side effects and the grim statistics." And then...he waits for my answer.

This is what I have been praying for. I so dreaded this doctor walking into my exam room and extolling the virtues of modern medicine, including interferon, and telling me that any suffering was in my own best interest in the long run, and then handing me a schedule of treatment dates that had already been made in my behalf. And little ol' me, saying, "Yessir, whatever you say, sir..." What a relief to look inside my heart and listen to the Spirit.

I take a deep breath and tell Dr. Grossmann - and the other four people in the room - that because of my experience with Dr. Bradley's assessment of interferon and my friend, Judy's, belief that her interferon treatments seven years ago are now causing other health issues in her life today, my heart - and brain and body - are telling me NOT to do these treatments. "I have six precious grandchildren," I say, and the tears come freely, "and I don't want them to see me have that kind of a life for a whole year. And I have a 14 year-old daughter who needs me - I need to be a mom to her."

There are many wet eyes (I remember Carolyn saying she has a 15 year-old), but Dr. Grossmann's eyes are bright and he's smiling. "I want you to know that I'm happy to hear you say this," he says. "I think you've made the right decision. We'll go forward with Dr. Avizonis and the radiation treatments, and you'll come back and meet with me for regular scans, starting in June."

I know this is another tender mercy. I know God wants me to live to see my grandchildren grow up. I know He wants me to see Janessa married and happy. I know that the radiation treatments will be successful - and that any of those side effects will not diminish my overall sense of my divine nature. I am a daughter of God! He loves me. He has given me every blessing, including these wonderful doctors and nurses who are specially trained to help me. I will live the next year...and the next and the next... and find joy in my journey.

I've already got an appointment tomorrow morning with Dr. Avizonis to start the "mapping" for my treatments. And so, I go forward, following my heart...