Letters From Cancerland: Of Money And Myeloma
I don’t know about anyone else, but when I was diagnosed with myeloma back in 2004, my work hours, which were already slim, were immediately cut back. When it became clear I could no longer perform my usual and customary job duties, my employment ceased entirely. I didn’t receive any unemployment benefits after my termination.
Before anyone rushes to comment on my rights as a worker, let me add one additional note: I was self-employed. At the time of my initial diagnosis, I was a lawyer in a small office in my hometown. I didn’t have disability insurance; I didn’t have medical insurance.
I don’t know what others out there in Cancerland do when they are too sick to work. I don’t know how accommodating employers are, whether or when unemployment benefits or disability payments kick in, or whether others have to change jobs or take early retirement.
I only know my own story, and it is this: as a self-employed individual, myeloma had a devastating impact on my livelihood and capacity to earn an income. In fact, eight and a half years after my initial diagnosis and eight years after my initial treatment (high-dose thalidomide (Thalomid) and tandem stem cell transplants in the summer of 2005), I am still recovering economically.
Or, more realistically, I am probably as recovered as I am ever likely to be.
In looking back, it is clear that the myeloma started to work on my eventual unemployment months before the disease was unmasked. My hours in the office started dropping. I still got the work done, but the pace was agonizingly slow. As my billable time declined, my earnings started to slide.
There were ripple effects, of course. My initial treatment, which started within weeks of my diagnosis, wore me down. My hours continued to drop and my income continued to sink. My increasing weakness made me unable to keep regular office hours, commit to long-term projects, or take cases that would require a lot of evening work (such as zoning, my specialty). My reduced earnings made me unable to pay my bills. Being unable to pay my bills jeopardized keeping the lights on and the table set.
In short, I was going down the financial tubes.
A lot of things changed in the first half year of my diagnosis and treatment. I shut down my practice, turning my open files over to my colleagues. I applied and qualified for Medicaid, so at least my medical bills were met. I moved to a smaller, cheaper rental. Other than my utilities, I defaulted on all my obligations, including income taxes (which I filed but did not pay). I knew this would have long-term repercussions, but I also knew I had few options.
I still had a small stream of income coming in, primarily from clients paying for work I had completed before I stopped practicing, and that kept food on the table. My parents, despite being retired, paid my rent and helped with utilities.
I got by. Coming out of the summer of transplants, I was physically unable to work for many weeks. Looking ahead to the future, I knew I was not yet up to practicing law. More fundamentally, I knew I never would be again.
I retired my license. I continued to heal. My parents continued to pay my rent. I filed for bankruptcy.
Six months after my second transplant, I went back to work as an independent contractor for a local court. I could finally pay my own rent. When I became ineligible for Medicaid, I had enough to pay, slowly and in installments, my own medical bills, which were relatively small as I was in remission.
I continued to string together a living until I was hired at our juvenile court as a part-time mediator. The job change meant less income, but more stability; it gave me regular paychecks and great medical insurance. After years of monthly payments, I finally paid off the last of the taxes, although I still have two tax lien releases to file.
My credit record is in pretty bad shape. Filing those releases will address the most egregious marks on it, but the report will still be ugly. It will never be truly good again. My checking account remains slim. I have no savings. It is unlikely I will work long enough at my present job to receive much in the way of retirement, so I am looking at social security in a decade, assuming I am still around to collect it.
Of all the impacts multiple myeloma made in my life, the financial one was in many ways the most severe. It is the one that over the years has caused me to lose sleep and feel utterly defeated at times. On the other hand, it is what it is. I cannot change what happened.
In looking back over what I experienced, there is nothing I can say to help anyone prepare for the financial devastation of a catastrophic illness. It is the tornado leveling the house, it is the tsunami sweeping bare the landscape.
When Mount St. Helens erupted in Washington in 1980, tens of thousands of acres of forest were destroyed. In the 33 years since then, the barren, scoured landscape has gradually grown back. It is not the dense forest that existed prior to the eruption, but it is a living landscape arisen out of the ashes.
I am reminded of that transformation as I write these words. Myeloma buried my finances fiercely and suddenly, changing my economic landscape permanently. But in the aftermath of the devastation, new growth began.
My economic health is not the same as before and never will be, but it is stable, and I am grateful.
April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Hi April,
Great letter. I'm sure your letter hit home with many of us.
If I had been diagnosed 5 years earlier that I was, I (we) too would have been financially wrecked. With 3 children in the home and being the sole provider, I can't imagine it. Luckily in those years immediately proceeding my diagnosis, we turned the financial corner after 20 years of hard work, had some savings and we secured good health coverage.
I don't think most americans realize how risky it is to be self employed.
There's no HR department to help guide through these things, there's no automatic retirement plan, no health plan, no unemployment, nobody to take over for a few months. It's just you versus the world!
Congratulations on being around for 9 years after diagnosis!
BTW-my diagnosis date is July 17th-September 11th, 2009.
I say that because first blood test came back with high protein, so they wanted to replicate it. But I knew there was a good chance I had something bad, myeloma being one of 4 or 5 things I had googled. Then second test came back and primary told me to see oncologist...who drew more blood and later, (9/11) said...well, you have what we call multiple myeloma. So I guess we use the date where the doctor actually says the words. But most of us know it's probably something pretty bad a few weeks earlier.
Hi April, Thanks for your very frank and informative column. I am so sorry that on top of a cancer diagnosis, you had to struggle financially also. It's great that your parents rallied to you and helped you and your family through this tough time.
I didn't have any disability insurance, unemployment insurance or the like since I work with my husband. He is self employed, but has taken out disability insurance, office overhead insurance and the like. I just kick myself because I could have taken out 'catastrophic' insurance where I would get a lump sum payment if I were to be struck down with any of a few serious ailments...including cancer! But at the time I never thought that would happen to me...how wrong can one be!!
So my family has looked out for me too! In Canada, at least we have universal health care coverage. No doubt that saves a lot of people from worse financial hardship than they already get by not being able to work.
April,
Thank you for covering this topic it really makes me feel as if I am not alone.
Again, thank you.
Becky
Unbelievably my daughter at the age of 32 was talked into paying into disability insurance at her work. 6 months later in Jan.2012 she was diagnosed with Multiple Myeloma which we had never heard of. Going through treatment her employer was wonderful. She worked 20 hrs a week mostly from home or the hospital & collected disability for the other 20 hrs. She paid into the health insurance at work but still has to pay the first $3000 in bills each year. after that everything is taken care of. It just so happened that the HR person at work was diagnosed with Breast cancer at the same time so they worked together to understand & get all the medical paperwork in order. After about 11 months from diagnoses with Vel/Dex treatment for 4 months, auto transplant & 4 months on Revilmid she is back to work fulltime since Dec.2012. Her transplant anniversary is in August & hopefully after testing to see if she is still in Complete Remission she will only be visiting the doctor for Zometa infusions once a month & seeing him every other month. I know a lot of self employed people don't have these opportunities insurance wise but I would advise anyone who can to sign up for disability & health insurance no matter how young you are.
I am a veteran and I would highly recommend that the younger people go into the military for 4 years to get the VA benefits. All of my medical bills are paid by the VA. So far, I calculate that they have spent over 1.5 million dollars on me. Right now, I take Revlimid after my ASCT, which they pay for at $10,695.00 monthly. Not to mention all the other meds I get. I had a heart attack in 2001 and could not work at my job anymore, so I went on SSD. Then the MM diagnosis came. If it hadn't been for the VA, I would probably be dead now. I am very knowledgeable about MM and the treatments and I can tell you that the care I have received at the VA is first class.
April, for all you have gone through you still have a smile on your face! You show real strength and resolve, and tell a story that many myeloma patients can relate. For many it becomes a fight for your life, and stack on top of that a financial nightmare, it can be almost unbearable.
Great article that can provide comfort for a lot of people who are still waiting for the grass to grow back on the mountainside.
Best Regards/Gary
Hopefully the Affordable Care Act (Obama Care) will offer self-employed people more affordable health insurance options. The insurance exchanges are supposed to help you find less expensive coverage than is currently available, which for the self-employed can be very expensive. At least you can't be denied coverage because of a pre-existing condition. That is better than it has been.
Ron H
Thanks for this story. First time I've read of this aspect of myeloma. Incredibly, just a month before I was diagnosed (9/04) I was hired to play a B'way show (I'm a musician), with full benefits, which I was able to hold onto for 6-7 years. Now I'm on disability--my wife divorced me and I wound up $80k in marital debt. But I'm out of debt now, having sold a property I owned, my young son is set for college and other investments, I have a good apt., and I get by. You're right: it is what it is. And that's all that it is. No changing it. It can really stink, but all things must pass.
Great story and very honest about how cancer affects us financially. We have good insurance but I'm always worried something will happen with my husbands job. We'd be pretty destitute as its mostly pay check to pay check and he's in his 60's.
glad everything is stable now.
Some great comments on April's column.
This hasn't been much of an issue with the comments thus far, but let's try to keep them focused on April's situation, the experiences she's shared, and the extent to which people appreciate or can sympathize with what she's gone through.
If people want to get into an extended discussion or debate about the merits of universal health care, the new U.S. health law, etc., a better place to do that would probably be The Burgundy Cafe in the forum:
http://www.myelomabeacon.com/forum/welcome-t289.html#p1038
When I submitted this column, I said to Maike, my editor here at the Beacon, that two taboo topics in America are death and money. Short of writing about the cost of funerals, I could only write about one of the two! Judging by everyone's comments, we all welcome the chance to talk about money. I constantly meet people whose financial lives have been turned upside down by a catastrophic illness; this was my attempt to share my financial tsunami so others know they are not the only ones ever to go through this.
Having cancer is bad enough without having to worry about money! So sorry that you--heck, that all of us--have to deal with this. Good luck!
Thanks, April, for sharing more about your particular myeloma story with us. It sounds like you've been down a very difficult road. I hope things are a bit easier for you in the coming years.
Thanks for the honest open discussion about the side effects of MM. We all need to hear them to adjust our mental compass to what can lie ahead for many who get our disease, up close and personal. Thank you for your candour and bravery.
Hi April,
Thanks for your column, money is an issue for most of us because the MM treatments are just so expensive and most people with MM will have to be in treatment for a long time. I was wondering if you considered SSDI, I know it's sometimes hard to qualify, and may take several tries, but it can make a big difference if you're unable to work.
Hi April;
I am very sorry to hear about your struggles above and beyond this devastating disease. I was diagnosed with MM exactly 3 years ago. Three days after diagnoses my first symptom was a farcture of my left arm. Lucklily I had the "dreaded" HMO insurance through my employer. The premiums were expensive ($1000+ A MONTH) but never for instant when I was in perfect health did I consider going without coverage. The "evil" HMO has paid for most everything icluding velcade, the collection part of autologous transplant, and the 10,000/month for revlimed. The question I have is that when you were working and heakthy why didnt you get some sort of health insurance? Kaiser or and HMO had to be available to you but you made the same decision most young healthy people make and will continue to make under Obama care. when you're young and healthy you would rather spend the money on a vacation than health insurance ! If it was up to me we would have a single payeer system that all reasonable western democracies have. I really cant belive that sometime next year I can choose an insurance company and tell them oh by the way I have MM and its going to cost you about 400k to insure me...unless I go through with my transplant then it will be closer to a million.
Jade makes a good comment about applying for disability, especially for those who know (or strongly suspect) they will not be able to return to work. I talked with both a disability attorney and had a caseworker at the area Social Security office and ended up making the decision not to apply because of the limitations it would put on my earnings. Getting approval can be a long process; in our area, the advice is to apply on your own, and then seek counsel (who around here will take the case at no cost because they will be paid as part of the admin. process) on the appeal. Certainly something to consider as you look at all your options (financial and employment among them). It used to be that after so many years on disability, you were also granted Medicare coverage, but I don't know if that is still the case.
In response to Charles, I did have medical insurance (paid for 100% by myself; the monthly premiums in 2003 were about $1100; there was no Kaiser or HMOs as such available)--which I had to drop because I could no longer afford the premiums. I could not longer afford the premiums because I had utilities and rent to pay, not because I wanted to take a vacation! If I could have afforded it, trust me, I would have had it. However, given what I saw while I was still in practice and have since seen as a volunteer at a free legal clinic, the insurance company would have dropped me at the very next renewal because of my medical condition. Buying your own medical insurance is a huge hurdle for the self-employed, especially if you are raising a family, keeping a household going, waiting for clients to pay their accounts, and so on. When I remarried in 2008, I could not be put on my husband's employer-provided insurance because it was too small a business (1 employee); the insurance company would not accept me because of the prior medical history (too high a risk). When I started my current job in early 2011 (great insurance, large risk pool), I had insurance in 30 days but still had to wait one year before it covered any MM related medical expenses--lab work, appointments with my oncologist--as the MM was a "preexisting condition." Fortunately, my MM waited until last fall (long after the restriction was lifted) before raising its ugly head.
It's sad that you wern't able to keep some level of catastrophic insurance coverage prior to your initial diagnosis. I don't remember what I paid in 2003 but it was probably closer to 800. Although I worked for a big company I paid virtually the entire cost myself. Unless you worked for the Government or some union connected job employer paid health insurance is a thing of the past
But I made a very good salary. I guess I overestimated a lawyer's income. I guess I am lucky that I was a STEM graduate and never had to worry about the basics of life.
I am very curious about how this new health care plan will work as I dtill think healthy people will avoid the system and people that are already sick will flock to it.
Get new Myeloma Beacon articles by email.