Riding The Wave – Multiple Myeloma

CB #2

June 16, 17, & 18, 2008

Clearly something was wrong, but I was very uneasy about a Radiologist making such a definitive diagnosis with no supporting data. His blood was fine, his urine was fine.

He was getting admitted now and I was trying to make sure that paperwork was signed adhering to the HIPPA laws (I hate those damn laws), to make sure that the doctors could take my calls. I called the front desk immediately and was transferred to the Social Worker’s office. By this time they were closed, but I left my plea. I knew from caring for my mother, that every hospital has a Social Worker (or two) who are there to help you. I left my message, who I was, the situation, I am 3,000 miles away, I need help, I need a liaison, please call me. I’m asking the nurses to get the forms, the waivers, the releases, whatever is necessary to make sure that Dave’s doctors HAVE to talk to me. I don’t want some arrogant hind-part blowing me off because he’s too busy to tell it twice and using the HIPPA to get himself off the hook. Bastards. I’m all worked up.

I call Jude, my best friend, who is in the medical field, vascular stuff. She’s totally freaked out, but like me, she moves into action and we have a plan. Like me, she is concerned about the diagnosis without supporting data, but she agrees, clearly something isn’t right. I call her husband Russell and at this point, that’s it. I’m not wanting to spread this around until I have more information. What’s the point? We don’t know anything for sure yet. The oncologist will see him in the morning and they will get some tests rolling.

I’m making reservations and figuring out what “Hill 10’s” I have at work that need to be addressed, if any, so I can head out. I’m not going the next day, but the day after. I go to work in the morning and get the IT guys to make sure I’m set up to remote desktop in. My boss is out of town. I’m the only admin person for the research center. I have no backup. But I do have the Mechanical Engineering Business Office and a great bunch there and terrific professors and students who will all pull together to do what they can without me and to help me.

On my way out to California, Jude and I know that the tests will be completed and the diagnosis will be rendered. She is to speak to the doctor (yes, made sure she was on all the damn forms) and we would talk when I landed in Vegas. Before I even get off the flight, I’m turning on my phone with the signal I have a message beeping at me. Jude has a good sense of these things and works with surgeons daily for the past 30 years in her profession. I trust her instincts as she can spot medical incompetence/arrogance 90 miles off shore with the smallest utterance of words from the doc.

As predicted, a diagnosis has been determined. Jude he tells me that the doctor is “on the ball” and that Dave has something called, Multiple Myeloma.

“Multiple Melanoma? What’s that?”

“No, no, Myeloma. Its a blood cancer. Dave is going to be fine. He said that if he had a Heart Disease patient vs. Dave, he would put all his money on Dave.”

“Ok, ok. Thanks Jude.”

“Hang in there Lor. Call me when you get there.”

I land in Sacramento and one of my dearest friends from my teenage years, Carmen M picks me up at the airport and drives me into Marysville to the Rideout Freemont Memorial Hospital. I remember this hospital from over 30 years ago. I’m a little worried. I’ve already been working on getting him moved. Trying to decide whether to bring him home to Maryland or take him into Sacramento to UC Davis Medical.

Tags: Melanoma, myeloma