Good question!
I feel extremely lucky to have had the choices that I did, and feel badly for those who did not have a choice. I'm glad to hear that some are able to access SSD and short term disability.
While continuing to work can have the benefit of providing a distraction, it can also sap energy. For those who are facing this decision, I would recommend taking a medical leave during treatment if at all possible, because it takes a lot of energy to get well. Many of the things that foster recovery – eating well, turning to loved-ones for support, sleeping, meditating/prayer, exercise – all take time. (There is increasing evidence that taking the time to exercise increases response to chemo and radiation, and it definitely reduces anxiety and depression.)
When I was diagnosed in August, 2012 I had multiple vertebrae fractures and could scarcely walk. My doctors told me that I would have intensive treatment and would be unlikely to be able to teach the fall semester and definitely unable to teach the spring term during the SCT and recovery. Fortunately, I had accumulated a year's worth of sick leave so I went on that immediately. I still had to pull together all my syllabi and program directing other administrative materials so that I could pass them on to others, and I had a few writing commitments I felt I had to keep – but it was an enormous relief to realize that I could focus my energy on getting better.
The doctors were absolutely right about my needing to take time off. I found the induction chemo, SCT, and recovery physically grueling. During that fall I also experienced some complications, including a deep vein thrombosis (DVT) and intractable back spasms, that increased my hospitalizations and doctor visits. The other aspect, which Mike mentioned, was the severe chemo / painkiller brain I experienced throughout the entire year. There was absolutely no way I could do my job without my brain so it was lucky I didn't have to try to fake it.
My second enormous relief came when I realized that I could retire two years early and not return to work at all. My job was very stressful, I had been working nonstop since I was 16 and I was ready to be done with it. I wanted to be able to devote what time and energy I had to other activities.
In the two years since I recovered from the transplant I have spent much time with my husband, daughter, granddaughter, and friends; written a novel; written a family history; taken piano lessons; sung in a choir; taken drawing lessons; fixed up the house; cooked more; and walked most days. It's been fabulous.
This spring I had an added complication of a new diagnosis of another (unrelated) cancer, requiring surgery and daily radiation, that ate up four months. But now I'm back to gallivanting about and enjoying life.
Forums
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Ginny - Name: Ginny
- Who do you know with myeloma?: self and four friends
- When were you/they diagnosed?: October, 2012
- Age at diagnosis: 62
Re: Multiple myeloma and work
All of the responses have been very interesting, indeed! I was diagnosed the first Monday of summer vacation this year, so I was lucky enough to be able to be home and rest during the induction phase. I never had any kind of reaction during this time, but as I look back now, I was a lot sicker than I thought at the time!
I returned to school when it started four weeks ago. The first Monday of the school year was my final Velcade shot. (YEAH) Now, I am facing my SCT in mid October. I have enough sick days built up to cover me while I am gone. I will return to work in January. I asked my specialist about returning to work at the height of cold and flu season but he said he didn't have any issues with it; he said I would be fine.
I have also been lucky enough to have a wonderful and caring principal and staff. And at 48, I would like to keep teaching for as long as I can. I HAVE CANCER, IT DOESN'T HAVE ME!!!!!
I returned to school when it started four weeks ago. The first Monday of the school year was my final Velcade shot. (YEAH) Now, I am facing my SCT in mid October. I have enough sick days built up to cover me while I am gone. I will return to work in January. I asked my specialist about returning to work at the height of cold and flu season but he said he didn't have any issues with it; he said I would be fine.
I have also been lucky enough to have a wonderful and caring principal and staff. And at 48, I would like to keep teaching for as long as I can. I HAVE CANCER, IT DOESN'T HAVE ME!!!!!
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mickey66 - Name: Mickey
- Who do you know with myeloma?: me
- When were you/they diagnosed?: June 2015
- Age at diagnosis: 48
Re: Multiple myeloma and work
My work story:
I was diagnosed in May of 2012 and started on Revlimid and dex in June (if I remember correctly). I was scheduled for an autologous stem cell transplant that December but ended up going with one cycle of Velcade and high dose dex, delaying the transplant until February. I had a tunneled catheter installed in late January, just prior to stem cell harvesting, and that's when I stopped working. Up until then, the only days I missed due to myeloma were a couple of days while I was getting the big diagnostic workup. Otherwise, I didn't miss a day.
I stayed off work through the transplant and recovery and went back in May of 2013. I was able to use my banked sick leave for that entire time, so I did not need short term disability. Had I been able to work from the hospital or from home during the transplant and recovery, I most certainly would have done so. I never felt too sick to do so, but I am a chemist and work in a lab, so telecommuting was not an option.
I was only able to keep working because I did not have any of the common issues that would prevent such a thing – infections, bone fractures, significant pain, etc. I felt pretty good through the induction process (the dex notwithstanding), so I had no real problem going to work every day. This kept my mind off of my health issues and made me feel like my whole life had not been upended by the disease.
Since the transplant, I've been on 10 mg of Revlimid daily for maintenance and (knock on lots of wood) have yet to miss any days for myeloma-related problems.
Speaking VERY strictly for myself, working as much as possible through the process was absolutely the right thing to do.
I was diagnosed in May of 2012 and started on Revlimid and dex in June (if I remember correctly). I was scheduled for an autologous stem cell transplant that December but ended up going with one cycle of Velcade and high dose dex, delaying the transplant until February. I had a tunneled catheter installed in late January, just prior to stem cell harvesting, and that's when I stopped working. Up until then, the only days I missed due to myeloma were a couple of days while I was getting the big diagnostic workup. Otherwise, I didn't miss a day.
I stayed off work through the transplant and recovery and went back in May of 2013. I was able to use my banked sick leave for that entire time, so I did not need short term disability. Had I been able to work from the hospital or from home during the transplant and recovery, I most certainly would have done so. I never felt too sick to do so, but I am a chemist and work in a lab, so telecommuting was not an option.
I was only able to keep working because I did not have any of the common issues that would prevent such a thing – infections, bone fractures, significant pain, etc. I felt pretty good through the induction process (the dex notwithstanding), so I had no real problem going to work every day. This kept my mind off of my health issues and made me feel like my whole life had not been upended by the disease.
Since the transplant, I've been on 10 mg of Revlimid daily for maintenance and (knock on lots of wood) have yet to miss any days for myeloma-related problems.
Speaking VERY strictly for myself, working as much as possible through the process was absolutely the right thing to do.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Multiple myeloma and work
I work as an emergency department doctor, so the work is difficult. It is emotionally and mentally very taxing, physically incredibly taxing, and the pace is fast and not under your control. You are on your feet almost the whole time – the hours are long (10-12 hours at a time), with little chance to rest, eat, or even go to the bathroom. There is a lot of bending and stretching, etc. Plus, there is a lot of exposure to infectious disease, even if you practice universal precautions. And the stakes are high. In short, it's a demanding job.
When I had my auto stem cell treatment for AL amyloidosis in 2012, I was out of work for 8 months, using both short and then long term employer-provided disability, as well as a private disability policy I had bought years ago. Then I returned slowly, increasing my hours gradually. I was back up to full time after about 4 months.
I have not been back to clinical work since my diagnosis of myeloma and the initiation of chemotherapy, mostly because of immunosuppression and fatigue. I am again on long term disability from my employer, and also using my private disability policy. Every time I think I get to a steady state where I think I could do administrative work or telemedicine, my condition and therefore my chemo regimen changes and I go through another period of adjustment. Finally, after about a year of this, I'm going to start administrative work and maybe some telemedicine in a few weeks. I anticipate that these things will not total more than 20 hours/ week, but at least it keeps me engaged and I'll need to use a little less disability.
Unfortunately, it seems likely that I will never be able to return to clinical medicine, actually taking care of real patients, because I will always be significantly immunosuppressed. This causes me so much grief. I love taking care of patients. I have invested everything I have and everything I am into being a doctor. That, and being a mother. It's not what I do, it's who I am. This damn myeloma is taking it away from me. We all know those quiet moments of solitude when we grieve the things that cancer takes away from us – privacy, mobility, youth, energy, money, not to mention health – and then we move on and do what we can to find meaning, joy and peace. To this list, I add my calling as a doctor. But I'm trying to move on and see what I can accomplish with admin work and telemedicine.
When I had my auto stem cell treatment for AL amyloidosis in 2012, I was out of work for 8 months, using both short and then long term employer-provided disability, as well as a private disability policy I had bought years ago. Then I returned slowly, increasing my hours gradually. I was back up to full time after about 4 months.
I have not been back to clinical work since my diagnosis of myeloma and the initiation of chemotherapy, mostly because of immunosuppression and fatigue. I am again on long term disability from my employer, and also using my private disability policy. Every time I think I get to a steady state where I think I could do administrative work or telemedicine, my condition and therefore my chemo regimen changes and I go through another period of adjustment. Finally, after about a year of this, I'm going to start administrative work and maybe some telemedicine in a few weeks. I anticipate that these things will not total more than 20 hours/ week, but at least it keeps me engaged and I'll need to use a little less disability.
Unfortunately, it seems likely that I will never be able to return to clinical medicine, actually taking care of real patients, because I will always be significantly immunosuppressed. This causes me so much grief. I love taking care of patients. I have invested everything I have and everything I am into being a doctor. That, and being a mother. It's not what I do, it's who I am. This damn myeloma is taking it away from me. We all know those quiet moments of solitude when we grieve the things that cancer takes away from us – privacy, mobility, youth, energy, money, not to mention health – and then we move on and do what we can to find meaning, joy and peace. To this list, I add my calling as a doctor. But I'm trying to move on and see what I can accomplish with admin work and telemedicine.
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Multiple myeloma and work
Tracy,
You don't happen to have dual citizenship, do you ?
New Brunswick is looking for a Regional Medical Officer of Health for the Fredericton area;
https://www.ere.gnb.ca/competition.aspx?lang=E&t=Y
You don't happen to have dual citizenship, do you ?
New Brunswick is looking for a Regional Medical Officer of Health for the Fredericton area;
https://www.ere.gnb.ca/competition.aspx?lang=E&t=Y
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Multiple myeloma and work
Hi TracyJ,
Your heart-felt post in this thread made me really sad. I can tell from your post that you loved the work you did and that losing the opportunity to continue that work due to multiple myeloma is a real struggle. I'm really sorry that multiple myeloma has robbed you of the career you love.
I recently had my first emergency room experience as an adult. From just my little 3 or 4 hours in the ER on one full-moon Friday night (and I'm sure you'll understand the significance of that timing
), I definitely can relate to the pace, the demands, the intensity, and the stakes of the job that ER doctors, nurses, and technicians face. I can imagine that once working in an ER gets in your blood (no pun intended), it's hard to leave it. Thank you for the essential work you performed!
I hope you may be surprised and find a way to return to your ER work despite multiple myeloma. Or, if that doesn't happen, that you can find other endeavor(s) that take advantage of your passion.
Best wishes.
Mike
Your heart-felt post in this thread made me really sad. I can tell from your post that you loved the work you did and that losing the opportunity to continue that work due to multiple myeloma is a real struggle. I'm really sorry that multiple myeloma has robbed you of the career you love.
I recently had my first emergency room experience as an adult. From just my little 3 or 4 hours in the ER on one full-moon Friday night (and I'm sure you'll understand the significance of that timing
), I definitely can relate to the pace, the demands, the intensity, and the stakes of the job that ER doctors, nurses, and technicians face. I can imagine that once working in an ER gets in your blood (no pun intended), it's hard to leave it. Thank you for the essential work you performed!I hope you may be surprised and find a way to return to your ER work despite multiple myeloma. Or, if that doesn't happen, that you can find other endeavor(s) that take advantage of your passion.
Best wishes.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Multiple myeloma and work
Hello TracyJ:
I am sorry if this sounds like I am piling on to MikeB's comments, but I would like to chime in my own two cents. You have so much to offer, that I hope that you can find a way to continue your career in medicine. I understand that there are issues with your condition, and demands of an ER doctor, that would make it difficult for you to continue day in and day out. I have to believe that with your skill set and your life experiences, that you would be not only an asset, but a treasured asset to other areas outside of the ER, for instance, medical research. I hope you find such an avenue, and that your health improves so that you can have the strength to make it a rewarding endeavor. You are in a rare position to make a difference for the entire multiple myeloma community. Good luck to you, and best wishes. Regards, JPC
I am sorry if this sounds like I am piling on to MikeB's comments, but I would like to chime in my own two cents. You have so much to offer, that I hope that you can find a way to continue your career in medicine. I understand that there are issues with your condition, and demands of an ER doctor, that would make it difficult for you to continue day in and day out. I have to believe that with your skill set and your life experiences, that you would be not only an asset, but a treasured asset to other areas outside of the ER, for instance, medical research. I hope you find such an avenue, and that your health improves so that you can have the strength to make it a rewarding endeavor. You are in a rare position to make a difference for the entire multiple myeloma community. Good luck to you, and best wishes. Regards, JPC
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JPC - Name: JPC
Re: Multiple myeloma and work
This quote by Tracy merits some reflection - "It's not what I do, it's who I am." Regrettably, young patients with similar perception about their occupation may have to reconsider this maxim. My occupation is not nearly as spiritually elevating as Tracey's. I am a mergers and acquisitions tax lawyer in NYC. I came to the US as an immigrant with $300 in my pocket and busted my ass to go through JD and then doctoral LL.M in tax. Wrote a notable tax book and to a few I was on my way to do great things in this field. Until 2011 when I was diagnosed with 80% bone marrow involvement and hemoglobin of 6.6.
As you can imagine, my career was a huge part of my life, along with my family, including my little one. Reality, however, does not ask us who we are, what we did, how nice we were, or not. It just is. And the reality is that once the beast knocks on your door, you better think very long and hard about your life, career, and what's important. To me, it was rather clear as a day. What's important to me is spending time with my family and enjoying life as much as I can whatever I have left. I may live another 30 years or 3. I have no clue. Surely, however, when the day of reckoning comes I am not going to wonder whether I spent my time wisely.
You may think based on what I wrote above that I quit my job as soon as the S**** hit the fan. To the contrary. I worked through numerous rounds of chemo and only took a few months during my auto transplant. I still do, although not sure how long I will able to keep it up. I guess tax law is this huge part of my life that I can't just give up. A part that now has taken secondary stage.
I guess the point of this rant-style post is that relatively young professionals who have given tremendous time and effort to get to where they were career-wise have some serious soul searching to do on the career issue and I would like to offer my empathy to those individuals. But again, I guess all of this is rather subjective because every single myeloma patient is going through some soul searching or another and deserves some empathy as well. Good luck to all of you. I am still kicking after more than 4 years considering I was nearly dead once when diagnosed, and once again during my transplant.
As you can imagine, my career was a huge part of my life, along with my family, including my little one. Reality, however, does not ask us who we are, what we did, how nice we were, or not. It just is. And the reality is that once the beast knocks on your door, you better think very long and hard about your life, career, and what's important. To me, it was rather clear as a day. What's important to me is spending time with my family and enjoying life as much as I can whatever I have left. I may live another 30 years or 3. I have no clue. Surely, however, when the day of reckoning comes I am not going to wonder whether I spent my time wisely.
You may think based on what I wrote above that I quit my job as soon as the S**** hit the fan. To the contrary. I worked through numerous rounds of chemo and only took a few months during my auto transplant. I still do, although not sure how long I will able to keep it up. I guess tax law is this huge part of my life that I can't just give up. A part that now has taken secondary stage.
I guess the point of this rant-style post is that relatively young professionals who have given tremendous time and effort to get to where they were career-wise have some serious soul searching to do on the career issue and I would like to offer my empathy to those individuals. But again, I guess all of this is rather subjective because every single myeloma patient is going through some soul searching or another and deserves some empathy as well. Good luck to all of you. I am still kicking after more than 4 years considering I was nearly dead once when diagnosed, and once again during my transplant.
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ivanm - Name: Ivan Mitev
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August, 2011
- Age at diagnosis: 37
Re: Multiple myeloma and work
This is an excellent thread. I stopped working a few weeks before being diagnosed since I had compression fractures and broken ribs due to my aggressive disease. I did not work full time for over a year. I was able to return to work full time about 8 months after my allo and have been working full time with no restrictions since. I do not do physical work so the bone damage does not affect me other than when exercising.
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Anonymous
Re: Multiple myeloma and work
Diagnosed at 57 with MGUS. Was full time. That was in February. Rapid progression during November of 2012 to ribs snapped in two, etc. when my hips fractured and it took me 45 minutes to cross the street. My office obviously knew something was terribly wrong. I cried over their kindness and disability parking sticker. It was ridiculous, I was now 58 years old.
By late February 2013 I was at 72%, in induction, working, limping along. My theory, though, is having to go every day kept me scheduled, focused, and oh so determined. Plus I had a huge support group. Trying to feed me, etc. One week of induction, a coworker found me me head down on desk. Spent a week in hospital.
I made it through 6 rounds, some good, some bad. I'm privileged to be able to work remotely from home and also had access to extended absence poo,l but only amazingly used 3 days even with the SCT in September 2013.
My story, like many, is up and down. I've had wonderful 2 years basically drug free, but that is over. I'm still working, completing my third round treatment. Will do second transplant, probably in November.
As for work, I read and retread Steve Mohr's recent article. It speaks to me. I turn 62 next July, so early social security is there. I will have close to 31 years, I'm more than eligible. I just love my job, but things there change too. A time of huge decisions, emotions. I'm determined that this damn disease won't rob me of things I've always wanted the freedoms to do, So maybe it is time to seriously evaluate in the spring once this transplant fun is done.
My hopes prayers and support to all of you as you struggle with these life decisions
By late February 2013 I was at 72%, in induction, working, limping along. My theory, though, is having to go every day kept me scheduled, focused, and oh so determined. Plus I had a huge support group. Trying to feed me, etc. One week of induction, a coworker found me me head down on desk. Spent a week in hospital.
I made it through 6 rounds, some good, some bad. I'm privileged to be able to work remotely from home and also had access to extended absence poo,l but only amazingly used 3 days even with the SCT in September 2013.
My story, like many, is up and down. I've had wonderful 2 years basically drug free, but that is over. I'm still working, completing my third round treatment. Will do second transplant, probably in November.
As for work, I read and retread Steve Mohr's recent article. It speaks to me. I turn 62 next July, so early social security is there. I will have close to 31 years, I'm more than eligible. I just love my job, but things there change too. A time of huge decisions, emotions. I'm determined that this damn disease won't rob me of things I've always wanted the freedoms to do, So maybe it is time to seriously evaluate in the spring once this transplant fun is done.
My hopes prayers and support to all of you as you struggle with these life decisions
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Pam in Austin
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