Despite stress and setbacks, and a lot more ex­pense than we had ex­pected, I am in my new home in Julian, California, a small mountain com­munity famous for its apples and daffodils. My wonderful mate Kaitlin has gone back to Tucson to prepare our house for sale, but our old dog, Gus, is keeping me com­pany as I sit and read in front of the wood-burning stove.

Our manu­fac­tured home, turned into an amazing refuge by Kaitlin, is on a hillside, and uphill gets to me pretty quick, but I walk Gus in a grassy area close by where we both get some exercise walking uphill on grasslands where deer and wild turkeys hang out. We call our new home Ruby’s Rest. The COVID-19 pan­dem­ic has put sale of our Tucson home on hold; I need to stay alive until it is sold and debts paid. One day at a time.

At six months since I stopped treat­ment, I’m doing okay, one day at a time. “Okay” means reason­ably functional. I still tire easily, with aches and pains that may be the mul­ti­ple myeloma, or just arthritis and old age; I turned 82 earlier this year. The rib and shoulder pain I had went away, and then returned, the myeloma getting aggressive and hitting my left side ribs now as well as the right. My left leg goes painfully numb from time to time. Nothing broken so far. I still find that my energy level diminishes as the day wears on. It’s tech­ni­cally spring here, but with snow last week, so I’m inside most of the time, just as I was in Arizona.

The treat­ment-induced neu­rop­athy in my feet isn’t going to go away, and I feel like I’m walking bare­foot on gravel, but it’s man­ageable with the help of a cane. My appetite comes and goes, I’ve lost weight, but my bowels are back to nor­mal. Drinking lots of water keeps my kidneys afloat.

I had my last appoint­ment with my oncologist in mid-January, and I was amazed and grateful for the love and hugs that were de­liv­ered from the nurses and sup­port staff. I guess, to them, I stood out from the majority who are too often trapped inside themselves and our dis­ease. If I brought a bit of joy to the hard-working staff and to some of my co-patients in the in­fusion room, that makes me happy; they sure brought joy to me. I’ve met my new pri­mary doctor, 22 miles (35 km) down the road. I don’t think I’ll look for an oncologist.

There has been some interest among the Beacon’s readers in my num­bers. I’m one of the 15 to 20 per­cent of mul­ti­ple myeloma patients whose free light chain levels are their pri­mary dis­ease marker. When I was diag­nosed in June, 2017, after sneezing and breaking two ribs, my lambda free light chain level was 269 mg/l. A year of lower-dose Revlimid (lena­lido­mide), Velcade (bor­tez­o­mib), and dexa­meth­a­sone (“RVD Lite”) brought my lambda level down to 29 mg/l, with 26.3 mg/l being the high end of the “normal” range for people without kidney issues.

When the cancer figured a way around the treat­ment, the num­bers started creeping up: 59, 85, and 105 mg/l. So I went on Kyprolis (car­filz­o­mib) plus dexa­meth­a­sone, and from Octo­ber 2018 to No­vem­ber the num­bers dropped to 91, then 86, but in De­cem­ber started back up to 100, then 92, then 191 mg/l. And the ther­apy was giving me blood pres­sure spikes that, at one point, made me pass out and convulse.

So in Jan­u­ary, 2019, I went to Empliciti (elo­tuzu­mab) with Pomalyst (poma­lido­mide, Imnovid) and dex. The lambda free light chain level dropped to 91, but the next month shot up to 230 mg/l. I got off that and started Darzalex (dara­tu­mu­mab) plus Velcade and dex, which caused a quick drop in the lambda num­ber to 160 mg/l. That treat­ment was interrupted by a bout of pneu­monia, and in­fusions resumed in May, with a lambda reading of 230, followed in June with a drop to 160 mg/l, with in­fusions moving from weekly to every two weeks.

But then the lambda level kept going up: 313, 363, 498 mg/l in August, with a stable M-spike of 0.4 g/dL. So I went on what the doctor called a “last-ditch” regi­men: cyclo­phos­pha­mide (Cytoxan), Vel­cade (bor­tez­o­mib), and dexa­meth­a­sone (CyBorD). The lambda level dropped slowly: 411, 401, and 302 mg/l in Octo­ber. But that regi­men was kicking my butt big time, and I decided to stop treat­ment.

In De­cem­ber, my new high for the lambda level was reached, 727 mg/l, and in Jan­u­ary, 2020, another personal record, 1301 mg/l, with a rise in my M-spike to 0.8 g/dL. I have read about at least one myeloma patient who was diag­nosed with a lambda free light chain level of 8,000. If that’s any in­di­ca­tion, I’ll be around for a while. But in case not, I’ve talked to a hospice group in San Diego that is sup­port­ive of California’s End-of-Life Choices Act. Whether I ever decide to avail myself of this choice remains to be seen.

I’m in no hurry to make that final exit, and, one day at a time, I’m doing all right even as the mul­ti­ple myeloma ad­vances. Good books to read and a library close by (closed now because of the pan­dem­ic), stories to write, discovering the shops and neighbors of a little village, basking in the love and sup­port of my hard-working Kaitlin, deer and wild turkeys in the neighborhood, and bacon. There is still joy in my life. I cooked a lasagna dinner for our friends Allan and Arnie who did so much to help Kaitlin create Ruby’s Rest.

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Today’s quotation is attributed to theologian Paul Reinhold Niebuhr (1892-1971), who may have heard earlier variations of it from others. It is called “The Serenity Prayer,” and it is commonly used in alcohol and addiction re­cov­ery meetings: “Grant me the serenity to ac­cept the things I cannot change, cour­age to change the things I can, and wisdom to know the dif­fer­ence.”

Editors’ Note: If you are thinking about commenting on Albert’s column, please recog­nize that he and his med­i­cal team have given a great deal of thought to the treat­ment de­ci­sion he has reached. As Albert has told us: “Everyone’s reac­tion to myeloma and its treat­ment is dif­fer­en­t. I have been happy with my on­col­ogy team, which truly has listened to me and been willing to negotiate. At this point, I am not really interested in hearing about other possible treat­ment regi­mens, clin­i­cal trials, or med­i­cal groups. There comes a time when one says, simply, ‘It’s done.’” We would ap­pre­ci­ate if you would respect Albert’s wishes in any comments you make in regard to his columns.