Concerns, Concerns and More Concerns....

rbabula

I have a million questions but will try to limit it to 3 or 4 for brevity's sake.

My fiance was diagnosed with Invasive Breast Cancer on August 16th.

More details at:
http://conniemhicks.blogspot.com/

She had a lumptectomy 9 days later and the surgeon was quite confident he got it all. Several days later we were told there were more tumors that would need to be dealt with. We were facing radiation and Chemotherapy. But now are waiting on an MRI. We can't get the MRI scheduled for 2 or 3 weeks! That should reveal if an additional surgery is necessary. Then, presumably we start the radiation and chemo??? My question is: isn't this a LONG TIME to be waiting when dealing with an "INVASIVE" Cancer? Shouldn't we be attacking it?

Also, does anyone have any advice on how to explain what is going on to our 3 year old daughter? She is aware that *something* is going on. She's scared. Asking questions about death that a 3 year old shouldn't be thinking about. My fiance is worried about how she's going to deal with things once the chemo starts. Is her first memory going to be "of mommy being sick?" Are there any resources that we can access to help deal with presenting this battle to a fragile 3 year old?

A final concern is finances? How the hell are we to afford this? As if all of this isn't stressful enough, but then there's all of the missed work. When first diagnosed I missed a week of work, Connie missed 3 weeks and used up all of her vacation time and sick days. Now we're facing 6 or 9 weeks of radiation (it's an 1.5 hour drive to Madison. 3 hours round trip). She surely cannot work during this time. Because she HAS a job that she is "choosing" not to be at she cannot collect unemployment. And because she isn't "disabled" for more than a year she cannot collect SSI Disability. There appears to be no legitimate resources to help us financially. We've already exhausted friends and family. Apparently all that is left is a $100 gas voucher from Kwik Trip. That will last 2 weeks if we're lucky.  We fear that on top of everything we're dealing with we will also eventually lose our home. There's no way we can make our mortgage on just my salary. Which will be even more traumatic for our daughter.

I am in the process of writing a forebareance letter to our mortgage provider hoping they can take a block of months worth of mortgage and move it to the end of our 30 year mortgage. It is an available option, unfortunately it takes them a minimum of SIX MONTHS to even READ the letter, much less act on it. They foreclose on your home after THREE MONTHS. I plan on writing to my representative and state senators hoping they can contact the bank on my behalf....not sure how that will work.

We also made a blog site to help us get donations from our facebook friends.

http://conniemhicks.blogspot.com/

and have had some success (several hudred dollars).

But surely there has to be some better LEGITIMATE resources available? No Umemployment? No Disability? There has to be something available?

Sorry for the ramble, please feel free to email me any information regarding ANY of my concerns. I have a million more, but have rambled long enough for a first post.

sagina

I don't know what state you are in for laws and such....but the MRI taking weeks is probably for insurance sake.  I called my carrier and told them time was ticking and could they move it along....since she has been diagnosed already, seems the process for approving the MRI would be faster....Does she qualify for FMLA? Not sure how this can you help you in the immediate, but....how bout the Susan G Komen foundation? I know they have several programs to help, the American Cancer Society? 

I was able to work throughout my treatments - six cycles of chemo, then lumpectomy, then 36 radiation treatments.  I was fortunate to work from home for the five days after chemo - mine happened to land on Mondays....was hoping for Thursdays treatment  - miss Friday -go back Monday, etc.  I work for a small company that could afford the flexibility.  Some days, admittedly I slept all day (usually the fourth and fifth day after chemo), some days my boss was at my house....

Does your wife have a short term disability that would kick in after the seven day out for illness? Like an Aflac or Colonial policy maybe?  do you or your wife have a cancer policy with Aflac or the such? 

Can she apply for unemployment - if the employer "chooses" not to challenge then the ties go to the runner....?

I'll ask a couple of the forums I am on to check out your question here.

dlb823

rbabula ~ Welcome to BCO, although I'm really sorry you have reason to be here, and sorry you have the added stress of financial worries on top of your fiancee's diagnosis.  But, unfortunately, it's not uncommon.  Hopefully, others who live in your state (WI?) can suggest some local resources for you.  You might also check with the social worker wherever your fiancee is being treated.  Often they can direct you to appropriate agencies for assistance.

You didn't say anything about health insurance.  Does your fiancee have that through her current job?  If so, she needs to keep her job if at all possible.  And so far, it sounds like you don't know if she'll actually need another surgery or chemo or radiation, so while planning ahead is good, you might be worrying about problems that may not arise.

If she does need radiation, it's normally 5-1/2 to 6 weeks, but it's like a 15 minute commitment each day, and nothing to prevent someone from working.  Are there any facilities closer to where you live, so that she wouldn't have to travel that long distance?

As far as your 3 year old daughter, most cancer centers provide psychologists or social workers on staff, free of charge.  Someone like that might be a good person to ask -- maybe even with your daughter.   Personally, I don't think 3 year olds can even begin to understand what's happening and should not be told anything beyond answering their questions in terms a 3-year old can understand.  I can't imagine a 3 year old even asking about death unless someone's given her information that's just way beyond her comprehension level.

Just as a suggestion... it's kind of hard to answer a bunch of questions in one post.  You may get more responses by future limiting posts to 1 or 2 questions.  

Hope this helps ~ Deanna

peggy_j

rbabula, sorry to hear you're going through all of this, and sorry your fiance needs a second surgery. FWIW, I was frustrated by how long it took to have my B-MRI done; we had to wait for insurance approval (a week) before they'd schedule it. My BS said that this delay would not impact my outcome. But yes this is aggravating to say the least.

I believe most cancer centers have a "nurse navigator" and she might be a resource to help you find info. Mine pointed me to a cancer support center which also had access to info like $ support for people who are low-income; they might point you in the right direction for your other questions. They also have access to support groups, including family support, and will even do medical research if needed.

GmaFoley

rbabula:  

I have had financial issues too and what I found is that if you Talk to your local county cancer services, the hospital, and/or the cancer center... they can help you ... there is alot of paperwork, so anything you fill out, make copies because you will need to refer to them each time you fill things out.. I was one of the lucky ones and I managed to get my hospital and radiation bills abolished (over $100k and I maxed out my parttime insurance in the beginning). I ended up with two surgeries too... Once you start getting bills, just write them a letter with, say, $25 and tell them you can't afford any higher payments... If you show good will, they will work with you... at least my surgeon and anesthesia bill - we just let them know if we have a problem paying one month and they let us wave that month... 

My 3 year old grandson, was very worried about Grandma (me).. I explained Grandma has a boo boo but it will heal... that was enough for him to digest... keep it simple.. when I came home from surgery I put a bandaid on my shirt to remind him not to lean on grandma there... It seemed to work... The county cancer society has family support groups for all to go to... To be with other families trying to explain things like this is very helpful.... 

Just know we are hear for you to vent and ask questions, I will pray for you all... One step at a time...One day at a time... remember, now, you need to support eachother...it is a hard process but you will be ok...

Chickadee

One detail, you do not have to be out of work for 1 year to qualify for SS Disability.  There is a thread further down with a lot of details.   The 1 year is used as a qualifier in terms of "you are likely to be unable to work for at least one year due to your disability"

You do however, have a 6 month waiting period from your approval to the first check arriving and that is very stressful for many if there is no other support to be had.

Your wife should apply for SSDI anyway and see what the outcome is.  Gather all her tests and diagnosis information and submit it with the application.  If she is diagnosed as Stage IV then she will be approved.

I think the advice of others is also important, seek out any state or local counseling services related to cancer treatment, they will take much of the burden off of you to find services.

So sorry your family must bear this burden.  Hold fast to each other and take it one day at a time.