Social Security Questions and Answers

Steven - regarding AC, I just finished DD x 4 (along with 3 of 4 DD Taxols...1 to go).  A word of caution about constipation...I never had it one time.  As a matter of fact, my stools have remained "loose" throughout treatment.  So I would caution your wife to "test the waters" before taking an anti-constipation med that might turn things in the other direction.  Diarrhea can cause dehydration which would be another whole can of ugly worms.

I had Neulasta after each treatment and never got bone pain.  Not once did I need to take even a Tylenol during AC.  I used Claritin the morning of the shot and for 4 days afterwards.  I have osteoarthritis and take a daily anti-inflammatory, which may explain why I never needed any additional pain management.  Again, she may have to experiment with what works for her.

After the first AC treatment I started getting cold sores (herpes simplex) on my lips and in my mouth.  My oncologist immediately prescribed generic Valtrex 2x daily and I never had a problem again.  I will stay on this med for a few months after chemo as I have a tendency toward outbreaks any time my body is under stress. 

My anti-nausea meds were Aloxi, Emend, a minimal dose of Decadron (6 mg) and a scopolamine patch.  I had compazine and ativan for breakthrough nausea and I may have taken a total of 10 pills throughout all of AC.  Small, frequent meals seemed to work the best for me.  If I got too hungry, I felt nauseous.  Kinda like morning sickness, to be honest.

I developed heartburn/reflux pretty soon after starting chemo.  I started taking generic Prilosec 20 mg each evening and that kept it at bay, along with avoiding the foods that seemed to trigger discomfort.  I have had to cut way back on carbonated beverages, which I normally love, because it just doesn't sit well.  I'm looking forward to actually "enjoying" a Diet Coke!

And most importantly, I drank at least 96 ounces every single day.  It doesn't matter what it is, and it can include juicy foods - watermelon, grapes, soups, you name it.  Whatever tastes good is what I eat or drink.  I was also administered an hour of hydration along with my pre-meds prior to infusions.

So, in case you haven't figured it out yet, there is a pill for everything except hair loss and fatigue! I am feeling like a chemical waste dump right at the moment. But I know it's temporary and I look forward to not ingesting all these things to offset chemo SEs.

Best of luck to you and your wife,

Michelle

I have been very busy soaking in all this info and I must also say how deeply touching it is that you are doing this Steve. I will add and keep your family in my prayers, and what a long list it has become.

 In 2006 at 40 yo I was dx Stage4 mets to liver. A soc. worker helped me get ssdi. It was a Godsend to get medicare in 2008 bc my hubby was self employed and w our 3 children our health care bill was equal to our mortgage.(We live in NJ.)  After many many tx and surgeries I am NED yet still on hormonal tx (at least 3 more yrs)and experiencing cripling side effects from that tx. Last month I got my ssdi review in the mail.....BIG freakout.....filled it out, sent it in.  Questions...............

My husband is now unemployed. If I do not get approved, will I lose Medicare? Who will insure me? If I do not get tx the cancer will probably start up again. Joint pain, fatigue and other side effects most definitely keep me from working.Do they take side effects into account? How long is the wait for an answer?  I got one letter a week after filing asking what work I've done since 7/29/08??? None was my answer. I called SSA. Where'd  they get that specific date?  The answer was no good reason at all. hmmm That's scary. Like everyone, I hope my chances are good.  I fear the financial burden I would be on my family.  I wish you all the best and peace as we all wait the wait.

Steve, I just read your last post. You talked about your wife. I am so sorry the tumors have increased. You guys are in my thoughts and prayers. Let us know how things go, okay?

Thank you! and Chick for the input!  I was also informed on Inspire that you have to be 5 yrs NED to be taken off ssdi. Hair can come back during chemo (not sure about AC) but just going from every week to every 3rd week on Taxol gave my hair a chance to grow. Best wishes to you and yours,

barb

steven   thank you.  I was going to pursue it,,,but then thought, maybe this is my time to re-invent myself and do something different.  i was working with violent adoslescents as a nurse and probably should not be in that environment anymore.  Just thinking maybe it was a blessing in disguise that I lost my job.

God bless you and your wife.

Thank you for your advice, Steve! Much appreciated. Please know that my heart and thoughts are with you and and your wife.

Love and light,

Mindy 

 Steven,

My hair started to grow back in before my last treatment and it kept on going - which did make me feel a little better.  I also had ordered some simple cotton caps, which were soft, warm and comfortable to wear over my head around the house as it upset my son to see me bald.  I also wore one of these caps with a full scarf over it when I went out and used full larger scarfs with a fringe that I tied at the nape of my neck so I felt like I still had long hair and I think looked much softer than a skin tight bandana.

As to  your concern with the flu season, being a nurse I am always trying to avoid germs and had my chemo during the winter 'flu' months also. I carried tissue hand wipes in my purse and a bottle of the liquid hands clean stuff for after touching things in public like faucets in bathrooms, door handles and the handle on the grocery cart.  My son thought it a good idea and carried a small bottle of the liquid wash in his lunch box and used some before handling his lunch.

I luckily don't need your help but I applaud you for what you are doing.  Please tell your wife that as a fellow Mom myself, I had to learn during these times to not punish myself for not being supermom and take it easy.  Housework will wait - read a book or do simple art projects with the children. If you cook, do it simple and double up - throw one in the freezer. Soup is good and nourishing - use the slow cooker pot - a bunch of vegetables and fresh bakery bread with grated parmesan cheese is my son's favourite.  Make a batch, freeze some and later in the week have it again.

My thoughts are with all of you........

Hi Amy, my thoughts are with you. I was on unemployment as well at the same time I applied for SSDI. I was told it was difficult to get disability and perhaps you don't get approved the first time. But I was approved the first time I applied. I received some legal advice because of the unemployment and it worked out. Steve can tell you more but I just wanted to tell you how it was for me.

Michelle, I was approved on the date that I was considered disabled as it relates to my ability to work. My disability date was the last day I worked. Then after 6 months (or however long that was), I was eligible to receive benefits. I received my first check before I got the letter. It was large, too, and thought it was a mistake but it wasn't. The check included backpay for the months I hadn't received benefits but was eligible for. Glad to hear you were approved! 

I'm not Steve and am not a lawyer, just thought I'd share. 

NNM - thank you, that does explain it the size of the deposit.  The math seems to indicate that they went back to the June 2010 first occurrence.  I am sure I have a notification in my mail that I will see when I get home.  Knowing that the waiting time for Medicare is less than we thought is really helpful.  My DH will be able to retire a little earlier now.  It's easier to carry one person on Cobra rather than both of us. 

Thank you for your wisdom and input here...I wouldn't even have thought to apply until I read some of your advice to others.  I didn't think the online application process was difficult at all.  I applied on August 5th, in case anyone is wondering how long it took...about 10 weeks from submittal to Soc Sec deposit in my checking account.

I am now "officially" retired!

Michelle

Hi Steven and thanks for the info. My question is I was a stay at home mom and have applied for SSI, my husband works but we are still at or under the poverty level, we have a mortgage but own nothing else, no children at home, ( average income $21,000 a year) Am I qualified for SSI and if so about what would I draw or should I just give up? I really would just be happy to have the ins.

Thank you

Emmy

I don't understand how people who are applying for SSDI can get unemployment benefits.  To get unemployment benefits one usually has to show they are looking for jobs so doesn't this prove they aren't really disabled if they are looking for work to get their unemployment benefits.  I am sooooo confused about how this SSDI procedure works and what one can and cannot do to be able to qualify for it.

What about the reverse?   What if I got diagnosed with stage IV while working full time, applied immediately but could not quit my job until I was completely incapacitated?    Would they deny me until I quit or would they take my diagnosis into consideration?   Or would they just keep my application on file and possibly approve me a few months later?