Myeloma On The High Plains: The “It’s All Relative” Blues

Everything in life is relative to that which we have experienced. If all I knew was that a wood sliver hurts when I get one in my finger, then having a wood sliver would be a pretty important issue. Just ask a three-year old with a wood sliver and limited pain experiences. No surprise there.
What I have found incredible, however, is the 100 percent validity of the “everything being relative” statement when confronted with cancer on a personal level. Remember the day when the doctor told you you have cancer?
Prior to my multiple myeloma diagnosis, I suspect that the most physically painful challenge I faced was a broken jaw. Emotionally painful, no doubt about it, was the death of my father. Mentally taxing, I suppose, is running my own business.
And then one day I was told I have multiple myeloma. The “things being relative” statement changed significantly – physically, emotionally, and mentally.
Multiple myeloma lives with me 24/7/365. Its timeframe is from now until I die. Wow. Living with cancer is not like a broken jaw. It has been an all-encompassing experience. The difficulty for me has been to put “living with cancer” into some sort of perspective.
I had no previous experience dealing with such a powerful situation that includes physical, emotional, and mental challenges on a constant basis. I had no idea and still do not know what to expect. Yes, I can read and listen to all the ideas and opinions about living with cancer from others. However, this is my cancer. The others do not know me or my thresholds.
What do I consider hard to live with or easy to manage? At what threshold is it okay to blow up? What is an acceptable level of emotional detachment? How am I defining the existence of suffering, of joy, of compassion, of gratefulness in my life? Am I being a bit disingenuous when justifying boorish behavior because I have cancer?
I suppose it is all relative, but relative to what?
Most recently, I had to order Revlimid (lenalidomide) from the specialty pharmacy. How lucky I have been that it has been almost six years of re-orders. But I've got to tell you, the process of getting my medicine is taxing. I get the sweats when I initiate the call for a re-order because it is a cumbersome process that is so totally out of my control.
The doctor’s office, the specialty pharmacy, and insurance company all have to be coordinated before anything moves forward. I have to rely on Wyoming doctors, insurance personnel in Texas, and specialty pharmacy personnel in Florida. My stomach churns writing about this.
After all of the forms, surveys, and delivery dates get set and the pharmacy ships the package to a delivery service with a jet airplane (to get it near Wyoming in a timely fashion), a delivery van gets the package from the airport to a delivery hub closer to Wyoming. Then, trusting that the package is correctly loaded on another delivery truck, a driver and truck have to negotiate about 80 miles (130 km) of “good roads” to get it from the hub to my hometown.
“Good roads,” you ask? What am I talking about? Well, already in September, October, and November of this year, the roads into and out of Laramie have been closed for a period of time due to excessive snowfalls and high winds, the opposite of good roads. So “good roads” means that the road is open and navigable by the driver and the truck (the ones with the hard, palm-sweating jobs, relatively speaking).
There is no exact time when the delivery will arrive, yet someone has to sign for the package. I accept this. However, it is similar to the old complaint about cable companies and their inability to pin down when their technicians will arrive to hook up the cable.
Once the package finally arrives, I still can't relax until I check to verify that it contains what it should.
And that whole process happens every month.
I get to experience all of that because I am living. The challenge for me is to respond to the process civilly. And, at times, it is not easy. I get frustrated. I lose my temper, get sideways, and maybe a little loud over the phone as I try to manage what turns out to be an unmanageable process. And then I get to feeling bad, and I want to apologize to everyone for my rude or obnoxious behavior because I know better.
All that being said, going through the Revlimid re-order is a cake walk, relatively speaking, compared to a bone marrow transplant.
I have to remember: it’s all relative.
To those reading, Happy Thanksgiving! May the goodness of the day accompany your journey.
Mark Pajak is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Thank you for your article, Mark. I have experienced the same trials with ordering my Revlimid. I've been in tears over the difficult process. I can't tell you how many endless phone calls I've made between the specialty pharmacy, oncologist, insurance company, etc. I was working during my treatment and had to have the medication delivered to my work. The package delivery had to be signed for because of the expense of the drug and to avoid overheating of the drug. I even had my treatment delayed a week, on one occasion, trying to get everything coordinated. My anxiety was through the roof. That said, one specialty pharmacy was very helpful in this process. When setting up for my delivery on one occasion the pharmacist helped me find a grant to help me pay for the co-payment cost. I was so grateful for his help and concern. This was a big help to our family. But even the smallest kindness means so much when living with cancer.
Mark, your article takes me back to my pre-menopause days of pregnancy tests twice a month in order to get my Revlimid refilled, and then I was at the mercy of whichever specialty pharmacy my insurance plan dictated was the pharmacy I had to order from. There was one pharmacy that was a nightmare each and every month, and I was so stressed out every four weeks. There were several times I was yelling at customer service representatives on the phone, and even my husband got in on the action one time. We took a trip to California to visit family and I was supposed to get my refill before we left town. That didn't happen, of course, and I had to go test at some lab out there and do the whole thing over again. My oncology nurse practitioner even called them and threatened I could sue them if they didn't get their act together. What I didn't have to experience was the road issue. Wow, I wouldn't even have thought of that. I hate that you have to deal with this. I hope the pharmacy, insurance, delivery personnel, and everyone you talk to each month will get it together so you can get your medications on time. Hope you have a Happy Thanksgiving!
Get new Myeloma Beacon articles by email.