Saturday, July 3, 2010

"How do you cope with not working and bring in an income?"

That is a question I posted on a cancer forum. The responses I received were insightful, informative and uplifting. I will share them here.

Roger, I don't know the full extent of your transplant story but I can certainly empathize about the loss of income and watching everything you'd worked for over the years disintegrate; my unrelated allo transplant story's been different in that I was given every warning you got, the same rounds of immunizations, but encountered no post-transplant infections or GVH issues. I returned to work fulltime relatively soon, and with young behavior-disordered kids at an alternative school---not exactly what my oncologist would've recommended, they advise against working with kids who can be little germ factories in regular classrooms, but in my job moreso, since we have to do a lot of "hands-on" stuff. But this was my line of work, and I think my oncologist recognized that my mental health was helped a lot by my job, so she's cautiously okayed it---and I wash hands religiously, use hand sanitizer several times daily, and have had no sick days, as opposed to my fellow employees (who got swine flu, etc.)---but you never know, I just take one day at a time. The new immune system has turned out okay so far for me, knock wood.

When you've had serious infections, like it sounds like you have had, they are understandably very cautious. And I can really relate to your subject line about not bringing in an income....I went to work 6 months after BMT, but had 6 months off (after my AML relapsed) prior trying to get into remission, waiting for my donor to be ready, etc., so a full year off work in total. And my husband's a self-employed graphic designer, so I was the health insurance provider for both of us. The $$ I've paid for COBRA---don't get me started. And his business was down due to our lovely economy. I had short-term disability, when that ran out, I never applied for long-term as I was determined to go back to work (I'm hard-headed) but that is certainly an option for people in our situations. But we went through all our retirement savings, bank accounts---any assets we have, we have used. I thought my first round through AML treatment four years ago was financially devastating for us, however that was a drop in the bucket compared to transplant. Some poeple do web pages where you can contribute funds, or have friends and families organize fundraisers---all viable ideas, I just never did that, it was hard for me to ask others for money when everyone was cash-strapped in this recession. But I do know people who have been very grateful for fundraisers that have been successful in their communities.

I'm 2 years post now, Roger---still owe my transplant hospital money (and I had health coverage) and I work during the school year about 60-65 hours a week (I have a parttime job, too) because frankly, I need the money. I feel great, normal again---I always ruefully tell people the only way I you can tell I've had a transplant is to look in my bank account! I try to remember it's all been worth it---our retirement fund is gone, our savings next to nothing, but I'm still around to mourn the loss of all that stuff, so I'm appreciative of that!

I think your work for the Blood Bank, and educating others, sounds fulfilling. I do the same for the LLS, my husband and I are currently putting together an educational DVD for them, plus I do first connection. These things help us help others and give back a little, but they are also very cathartic for us, too. So I think it's great that you are doing that! Remind yourself how very important that work is, even if it isnt a paying job.

Do look into the long-term disability. I never did, so I'm clueless as to how to help there, but others here have done it and will gladly give you more info. With your extra health precautions due to the infections you've had, etc. I'm sure your doctors would agree you'd qualify. The hospital social workers are usually very helpful with that sort of thing, too.

I wish you well, Roger, and hope that the infections are a thing of the past for you! Please let us know how you are doing.



I'm sorry to hear that your immune system is taking so long. We all have melt downs at different points. In some ways, they can be theraputic. It sounds like you were able to get control again which is great. I just encourage you to be vigilant about your meds and care. I believe it's worth the fight.

I will just echo what others have said about applying for SSDI and looking into working from home. Some of those work-at-home deals are fishy but I would talk to a job counselor to see what they may be able to offer. I know of some community colleges around here that offer help with job searches and you typically only need to be a resident of that county to use them. You may want to look into that in your community.

Take care,
I don't think you're concerned about bringing in an income from the financial end, at least not as much as you're concerned about not doing what you're supposed to be doing. Am I right? I mean, I've been there, too. The money's a bitch but not being able to do what we were brought up to do is a bitch.

I hear what you're saying about feeling, can I say "useless" or not being the man you're supposed to be? That crap still weighs me down sometimes and just kicks me in the ass. If I'm misreading you, I apologize and won't turn this into my own vent.

However, in the event I'm on the right path, let me address a couple of things. You mentioned your life is on pause. It depends on how you look at it. I come from the angle that life's what it is whether I like it or not. My life hasn't been on pause a minute. My life has been redefined and refocused for a period of time. I am living life even in this very strange and somewhat disappointing world I've found myself in. Whatever lies ahead is my life. Time to get an lead pipe and bludgeon my way through it.

My choice of CDs would've been David Lee Murphy instead of George. But we all need the medicine we need, ya know?

I'm most sorry that you seem to be finding all of this out now. It would seem more appropriate if they'd've gotten you ready for this going in. You need your vaccines, you need to get your immune system up, especially if you're a plumber. But, who knows, you might be on a new career path with the work you're doing. Many people in health care got there in response to disease. I once thought I might, but then thought better of it. Just not my calling.

Now, if I'm reading right, I need to clear something up for you. GVH is not an infection, in fact it's kind of the opposite of an infection. In a way it's about too much immune system. You might want to get your doc to go over that with you again.

But kudos to your doc. As WBF said, the emotional/mental side of this isn't usually addressed as directly as it should be. I think that your doc got you with a grief counselor was a great move. I hope the counseling helps.

I'm not aware of when you had your transplant but if you're just now getting your vaccinations, I figure it has been over a year? So I'm having a tough time figuring the timeline here. Sorry, I have chemo brain...another way life changes for some of us.

I hope you're feeling better today and will continue to get better each day.

I think Tex brings up some really good points. I can only answer as a spouse, but I will tell you there wasn't a minute of my husband's treatment when I thought he was a burden. I was so busy being thankful that he was alive and fighting, that money didn't cross my mind. We have always been able to pay our bills, we have cut down on a lot, but we are fine with that! Dan has been off of work for six months and I am a stay-at-home mom. We are thankful that Dan's job has a really good "sick leave" program and we had bought an income protector policy a few years ago. Of course nothing kicked in right away, but it all worked out. We have gone through a bit more of our savings than we had planned but sometimes that's what happens in life. He's scheduled to return to work in 1 1/2 weeks. We'll still be close to a month longer without a "real" paycheck.

Money aside, our family has made it our mission to pay things forward. We fundraise. We raise awareness. We give back. For us, it's a need. We are determined to turn this whole experience into a positive one. My husband (a pipefitter/sheet metal worker) has often thought that maybe one day he'll change careers. For now, we are just moving today is a "new normal." We'll never have Dan's pre-leukemia days back. Our family will never be the same. We are OK with that now. We have today, and today will rock! We are prayerfully confident that each day will grow into a new day where Dan is healthier and stronger and our family is that much closer. We are thankful every day for that!!

We have gone through little spurts of sadness. I guess we kind of mourned for the way things were. I'm sure everyone does at some point. More times than not, we just celebrate all of the GREAT things we have been blessed with. We celebrate the good days...we celebrate that the bad days aren't worse!

Maybe my answer is a crappy one. Dan said from the begining that cancer would not define him and anyone that wanted to play along HAD to be positive and enjoy life! I chose life. Leukemia, for us, is just a bump in the road of life.

PS-change the CD!! George Strait on a happy day would make me wanna drive off a cliff Get you some drivin' rock, jammin' music...I'm more of a Red Hot Chili Peppers gal myself!**************************************************************************

Thank you all for your time and your comments

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