Arnie’s Rebounding World: The Decision To Stop Working
For three years after my myeloma diagnosis and initial treatment in 2006, I continued to work a fairly full schedule as an ear, nose, and throat surgeon, seeing patients three days a week and doing surgery two days. However, by design, my days were not nearly as full as before I had gotten sick.
As I mentioned in my last post, after relapsing on Revlimid (lenalidomide) / dexamethasone (Decadron) two years ago, I started treatment with Velcade (bortezomib) twice a week. Since the Moffitt Cancer Center was right across the street from my office, I was able to finish my day at work and go over for a treatment with minimal disruption.
The response to Velcade was great but the side effects were not. I was losing weight, was incredibly fatigued, and the neuropathy in both my hands and feet was becoming a problem, especially because I was a surgeon. Working was becoming more and more difficult.
I had known from the time I was diagnosed that there would come a time that I would have to make a decision about continuing to work. It seemed that I had reached that point. This may be one of the most difficult decisions for any person to make, and it is made even more difficult by the unique uncertainties that multiple myeloma presents.
I knew that once Velcade was stopped, some of the side effects would start to subside. But there were other factors to consider. How much of an effect did both the physical and mental stress of working a demanding job have on my health? Even if the Velcade side effects did settle down, how long would my good response last before I needed more aggressive treatment again (six months? a year? five years?), putting me back in the same situation I was currently in or worse? Perhaps most importantly, how best to spend the time I had before that happened? Isn’t it more important to try to reduce stress, enjoy more time with my family, maybe even travel, health permitting?
All these things were running through my mind as I weighed the decision. I had spent my whole adult life studying and training to do what I did. I was at the height of my career and had finally gotten pretty good at it.
For many people, a large part of their identity is wrapped up in their work. When they stop working, that identity is gone and they feel lost and adrift. I know everyone is very different when it comes to this. People asked me “What are you going to do?” “Aren’t you afraid you are going to miss it?” And, of course, the popular “Won’t you drive your wife crazy being home?”
Those things did not really concern me. I felt I had prepared myself fairly well. There seems to be an emphasis in our culture on always “doing” something and being busy. I was OK with the idea of just “being“ for a while, taking care of my health and wellbeing.
I had been living with multiple myeloma for three years at that time. I think the decision would have been more difficult if I had had to make it when I was first diagnosed. I did not see myself as only my job. I did have lots of hobbies and outside interests. However, one of the cruel ironies of the multiple myeloma was that while I might have more time to do some of the things I enjoy if I stopped working, the disease would make it more difficult to do them.
There are other very practical considerations when stopping work. First and foremost, there are, of course, financial considerations. Do you have a disability policy, individually or through work? Are you eligible? Do you qualify for Social Security disability? Do you have some other means of income? A spouse who works? It’s not stress reduction if you have to worry all the time about finances.
The second huge consideration when you stop working is what happens to your health insurance. This is a whole subject in itself. Once you have any chronic disease, multiple myeloma included, you have a pre-exisisting condition that makes it impossible to get individual coverage, and any lapse in coverage may result in not being insurable. Until the health care mess in this country is sorted out, this will remain a problem, and a misstep in this area can be devastating. This must be thought through carefully.
There is no right and wrong answer for everyone. All in all, the decision to stop working when I did was the right one for me. It has given me quality time with my family. It is given me the ability to deal with multiple relapses of my multiple myeloma and with the side effects of the medications without having to worry about a stressful job and schedule to keep. It has given me the opportunity to explore other avenues and time to just “be.”
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I had to make a similar decision in 2005. I was an attorney in a small private practice. Post SCTs, I had to grapple with the question of "do I go back to practice?," knowing that while I enjoyed my work tremendously, the physical and mental toll (stress, hours, etc.) would be huge. My license was up for renewal; at 2 a.m. on the next to last or maybe even last day I could make that decision without incurring late fees, I wrote the Supreme Court and put my license on inactive status. It was a hard decision, for many of the reasons you state ("but wait, I'm a lawyer!"), but once I made the decision, I never looked back.
I have been working (part-time) in the legal arena in other ways for 5+ years and have enjoyed my post-attorney career as much as practicing law.
Good post!
I also made the decision to stop working in 2002. After my first stem cell transplant in 2000, I made 2 unsuccessful attempts to return to my job as an HR Administrator. Pneumonia, overwhelming fatigue, and constant nausea made it clear that I needed to retire on medical disability, and take the time to take care of myself in this "new normal". I had to realize I just did not have the strength or the stamina to continue working. Luckily, my husband was still working and carried our health insurance, and I was able to get SSDI without any hassles. And when I needed a second PSCT in 2004, I was free to just concentrate on that process.
I still experience the fatigue and nausea when I overdo, but having the freedom to pace myself and rest when I need to, is really crucial to my well-being. Myeloma did make me slow down......I appreciate every day, and although I miss working, I am also taking the opportunity to just "be".
Jan, if you're reading this I'm curious about your continuous issues/problems such as fatigue and nausea. Did you reach CR? Are your blood counts normal or close to normal? I guess I don't understand. Logically, if you're near CR and your counts are normal, you should feel pretty normal. I'm on the brink of treatment and I'm hoping that if I knock this back it will get me some normalcy for awhile. It's been 7 years since your 2nd transplant. Did you have any time of normalcy in that period? Where do you stand disease-wise currently? Are you drug-free? I can understand that maintenance therapy will keep you down but hopefully not enough to disable you.
Hi Kenny,
I will try to clarify my situation for you. I did reach CR, have been stable since my second transplant, and my blood counts are stable (though I run borderline anemic). I have to explain that I also have amyloidosis of the kidney, which I understand about 20% of MM patients have. I cannot take Pamidronate because it was injuring my kidneys (I currently have about 40% kidney function) and I take no other drugs for the MM at this time.
Overall, I have reached a certain level of normalcy - I don't want you to think I am totally disabled by constant fatigue. I have found, that when I overdo - such as too many activities in one day or too close together during a week - then I experience nausea accompanied by a deep fatigue, that feels like flu symptoms. I also get more susceptible to headcolds and sinus infections.
The best way to avoid that when I can, is to pace myself, get plenty of rest, and not try to do everything I used to do at the same speed. Not working has definitely helped.
The best explanation I have as to why these symptoms linger, is simply my body's reaction to the various treatments I have had since 2000. I started with CVAD (Cytoxan, Vincristine, Adriamycin,& Dex) - one week 24/7 in the hospital each month for 6 months, then total body radiation, before the high dose chemo (Melphalan)and then transplant.....and then the same high dose chemo in 2004 before the second transplant.
I have not had any of the newer drugs that are available now, so your experience will probably be vastly different from mine. I think it is important, though, for those interested, to know that there are many different reactions and side effects to these procedures, and mine is just one example. Thanks for giving me the chance to explain it all ! Best of luck with you upcoming treatments......I wish you patience and perserverance and above all, a positive outlook !!!
Arnie.......I can empathize with you. I struggled for 11 years seeing the best of rheumatologists and orthopods but my back problems continued unabated. I underwent 3 surgeries (laminectomies) on my spine from 1985 to 1996. The pain never abated. In 1996 having reached my 63rd birthday and unable to stand in the O.R. for any lengthy Time (as a damn good Urological surgeon) I had to give it up. It was not until 2009 that an astute cardiologist came up with the possibility of MM. I have for the past many years pursued my special gift as an artist creating sculpture and relief paintings, exhibiting as much as I could. That was curtailed by MM. Now I have bee on therapy for a few months and my life is retaking shape. I'm on Velcade, Revlimid, and Dexa. Started my 4th cycle and doing very well under the care of David Siegle and the myeloma center in Hackensack, NJ. In fact my travelling plans now includes a trip to Israel with my wife in August. When I come back we are definitely considering stem cell transplant, even at my tender age of 78. What the hell do I have to lose??? If it allows me to paint and travel I'll damn well give life a shot!!!
Excellent article Dr. Goodman-
I imagine all MM patients have the same thoughts as you, but it is reassuring to have your thought process outlined. Your self examination is similar to Samuel Clemons' works ... We all feel the same way but constantly wonder whether others go through the same process.
The only information I can add is that SSDI is very easy to obtain in Southern Calif. for MM patients (fast track processing; relatively little hassle). Obtaining meaningful Medical Insurance (even without a lapse in coverage) was impossible. After running out of COBRA I finally resorted to the California High Risk Insurance Pool. Monthly premiums of $2,000 with a maximum coverage of $75,000. Fortunately Medicare kicked in after 29 months of qualified disability.
After a successful career as an executive I chose early retirement at 56 years old and only regret I didn't retire earlier.
This is a big change, even without the MM. Take it easy and give it a little time and you'll find your way into something new and enjoyable. From your past articles, it would seem that it is what you do, and well, for yourself and your family.
I have been quasi pushed into the STD then LTD by my employer, a bit of background. I am 57 yo male, presented with renal failure 10/09 restart 1/10, stem cell transplant 3/10, back to full time software contract management role 6/10. Long hours high stress thru an RVD 21 day protocol and thankful very thankful Valcade went from IV to subQ.
So management changes and such and my very expensive position is eliminated, I engage with HR just before notification and enter STD. Then on to LTD which will force to me SSDI, I understand.
Issues are more mental then physical, beyond the neuropathy/bone pain and inconsistent bowels. The stress and strain of 80 hour weeks, loss of a nights sleep with Dexa, not to mention the daily fog Revlimid and Dex provide has killed me mentally. While my numbers have had only minor ups and downs, I have almost totally lost the ability to focus on a book little less the details of contract points and negotiations.
So now a little depression sets in as I await the disability obstacle course I am anticipating, any input\experience would be most appreciated.