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

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Published: Nov 25, 2020 8:19 pm

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 .

Photo of Mark Pajak, monthly columnist at The Myeloma Beacon.
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2 Comments »

  • Lu Olson said:

    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.

  • Susan Mandel said:

    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!