My dad- update

jessicalla
jessicalla Member Posts: 29
edited March 2014 in Esophageal Cancer #1
Hello all,

We found out today that my dad's tumor did not test positive for HER2. This is disappointing, because we were hoping to try the Herceptin that some of you have mentioned here. They've also found something in my dad's lower spine. They are unsure of what it is. They have chosen to not biopsy it because it's in a difficult spot and they will just do another scan in six weeks after chemo has begun. We are wondering if it's an old injury or if it's actually a tumor. We will have to wait and see.

My dad is getting a chemo port installed this morning and his first radiation treatment is this afternoon. Chemo begins on Monday with Carboplatin. My dad will also begin the four day at a time 5FU pump soon.

In addition to our worries about his health, my parent's finances are a real concern. Finances were a concern prior to my dad's diagnosis, primarily because my dad is self-employed and they are paying $1300 a month for a high deductible health insurance plan. My mom is a substitute teacher and the only way they will be able to make it financially is if she gets a full time job that offers benefits. We are in the process of figuring out how my dad's disability insurance and social security will be able to help. We would like for my dad to be able to retire from his traveling sales rep job- it doesn't seem to be an option at this point. We are trying to figure out how my mom can 1) find a job, and 2) start a new full time job when she needs to be a caregiver for my dad. My brother and I are helping as much as we can but there are only so many days we can take off work.

As if this stage IV diagnosis wasn't bad enough...we also have to deal with the financial aspect. Very overwhelming and upsetting.

Comments

  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #2
    It Will All be Ok
    Hi Jessica,
    First of all let me send you a big hug. We had this financial problem as well. It is very hard to take on another problem, but you can do it. Just put your mind to it. This is what we did: My dad was retired, he collected social security, he only had basic blue cross/blue shield. This was not good. We looked into supplemental insurance. Bingo. This was the answer. It is through his medicare. They accepeted his pre exitsting condition. They helped pay a whole lot of the bills. I know you said your dad is not retired yet....hmmmm, you might be able to do something with his disability insurance. I do not know too much about that. As far as your mom working full time? That most likely will not work. She will be his main caregiver, any job she gets will not give her benefits right away, and most insurance co. will not cover someone with pre existing conditions. I would focus on #1 finding out about the disability insurance and what they offer, and #2 discuss him retiring, collecting s.s. and getting a supplemental insurance plan. #3 Also, you can contact the ACS their 800 # is on the csn homepage. They could also help you or turn you in the right direction for financial help. #5 You could also ask at the hospital if you qualify for financial assistance. Jessica, you will have to be the one doing all of this phone and leg work. This is what I had to do. Mom was main caregiver, but I was the one on the phone, making appts, finding out about insurance, talking to the pharmacy, etc. Dad always said...remember the squeaky wheel gets the attention. You have to be that squeaky wheel girlfriend! Best of luck to all of you. Thinking of you and praying for you daily. Keep us updated.
    Tina
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #3
    Caring Voices web site
    Hi Jessica,
    I just wanted to let you and your family know about another wonderful cancer related website. It is called Caring Voices. They just sent me an email about some topics they will be discussing in May. One of them is how to deal with any GI cancer. GI stands for gastrointestinal. Esophagus cancer fits into this category. It will also discuss "How will I pay my bills". I thought this could be of great help to you. Hope this helps. Thinking of you!
    Tina
  • jessicalla
    jessicalla Member Posts: 29
    #4
    Tina Blondek said:

    Caring Voices web site
    Hi Jessica,
    I just wanted to let you and your family know about another wonderful cancer related website. It is called Caring Voices. They just sent me an email about some topics they will be discussing in May. One of them is how to deal with any GI cancer. GI stands for gastrointestinal. Esophagus cancer fits into this category. It will also discuss "How will I pay my bills". I thought this could be of great help to you. Hope this helps. Thinking of you!
    Tina

    thanks Tina
    Thank you Tina! You have given me some good information and resources. I really appreciate it...we need any ideas we can get. Thank you so much...your care and concern is a blessing.
    Jessica
  • MOE58
    MOE58 Member Posts: 589 Member
    #5
    DISABILITY
    Jessica,

    Apply for his social security disability and push it through as compassionate, he will get it immediately. We applied in November and his first check was in January. For the work disability it all depends, Jeff had short term and long term so that was a blessing.

    But from a caregivers point of view your mother is going to have to be there for him 24 hours a day.

    I don't know if your state has FMLA but you and your brother need to make sure you apply for this through your employer. This saves your job and they cant fire you it protects your job. I am still on it and not ashamed of it either some places will pay you and some won't. I was able to work from home for 6 weeks while he was recouping from surgery and that was a blessing I would go in to work about once a week, and would leave him about 2 hours after I knew he was down for the day, and his parents were within 5 minute drive so that helped also.

    Its scary but you have to hang in there. Also Mumphy (kathy) might be able to help you with the place on his back thats what her husband had also

    If you have all your dad's records when you apply for ssd it will help thats what I did.

    If I can help further let me know

    Lori/moe
  • unclaw2002
    unclaw2002 Member Posts: 599
    #6
    MOE58 said:

    DISABILITY
    Jessica,

    Apply for his social security disability and push it through as compassionate, he will get it immediately. We applied in November and his first check was in January. For the work disability it all depends, Jeff had short term and long term so that was a blessing.

    But from a caregivers point of view your mother is going to have to be there for him 24 hours a day.

    I don't know if your state has FMLA but you and your brother need to make sure you apply for this through your employer. This saves your job and they cant fire you it protects your job. I am still on it and not ashamed of it either some places will pay you and some won't. I was able to work from home for 6 weeks while he was recouping from surgery and that was a blessing I would go in to work about once a week, and would leave him about 2 hours after I knew he was down for the day, and his parents were within 5 minute drive so that helped also.

    Its scary but you have to hang in there. Also Mumphy (kathy) might be able to help you with the place on his back thats what her husband had also

    If you have all your dad's records when you apply for ssd it will help thats what I did.

    If I can help further let me know

    Lori/moe

    Jessica,
    You and your
    Jessica,

    You and your brother should apply for FMLA (and do it at the same time to save the doctor's extra work. FMLA allows you to take your sick and vacation time to help take care of a sick family member. The forms are terrible and you have to get your fathers doctor to fill them out --- but as Lori says the plus is you can take time off and you can't be fired. If you run out of vacation and sick leave you can take unpaid leave under FMLA and again you can't be fired. So even if you don't have paid vacations or sick leave you should still apply for FMLA certification to protect your job so that you are allowed the unpaid days off without risking your job.

    I went through the FMLA certification process and it is worth it. Next week I am using 5 days of my sick leave (i never use it and it just keeps accumulating). You can only certify for 6 months at a time so once you get to the 5 month mark you recertify and the docs don't have to go through all the paper work again. Check with your HR person and if they have never processed or don't know about FMLA let me know and I will be happy to give you some of the federal links and walk you though the process.

    Best,

    Cindy
  • unclaw2002
    unclaw2002 Member Posts: 599
    #7
    Here is some addinal
    Here is some addinal information on FMLA --- although a federal program employers are required to comply with its provisions if they have 50 or more employees. Some employers with less than 50 employees also participate but they are not required by law to offer this type of leave. The DOL website is http://www.dol.gov/dol/topic/benefits-leave/fmla.htm


    A general explanation for the employee:


    The Family & Medical Leave Act (FMLA) allows ”eligible” employees to take off up to 12 work weeks in any 12 month period for the birth or adoption of a child, to care for a family member, or if the employee themselves has serious health condition.

    An “eligible” employee is an employee who has been employed by the employer for a least 12 months and worked at least 1,250 hours. The 12 months do not need to be consecutive. You are only an “eligible” employee if your employer employs 50 or more employees within 75 miles of the worksite.

    FMLA can be taken on an intermittent basis allowing the employee to work on a less than full-time schedule.

    The employee is entitled to have their benefits maintained, but they must continue to pay their portion during the leave. The employee also has the right to return to the same or equivalent position, pay, and benefits at the conclusion of their leave.

    The eligible employee must provide 30 day advance notice for foreseeable events. The employer is allowed to ask the employee to obtain a certification from a medical provider testifying to the need for the employee to take the leave for themselves or for the family member. Upon completion of the leave the employer is allowed to require the employee to obtain a certification of fitness to return to work when the leave was due to the employee’s own health concerns. The employer can delay the start of FMLA for 30 days if the employee does not provide advance notice, and/or until the employee can provide certification from a medical provider.

    If you and your spouse both work for the same employer. You cannot each take 12 weeks off for the birth of a child, when adopting a child, or to care for a parent with a serious health condition.
  • jessicalla
    jessicalla Member Posts: 29
    #8
    unclaw2002 said:

    Here is some addinal
    Here is some addinal information on FMLA --- although a federal program employers are required to comply with its provisions if they have 50 or more employees. Some employers with less than 50 employees also participate but they are not required by law to offer this type of leave. The DOL website is http://www.dol.gov/dol/topic/benefits-leave/fmla.htm


    A general explanation for the employee:


    The Family & Medical Leave Act (FMLA) allows ”eligible” employees to take off up to 12 work weeks in any 12 month period for the birth or adoption of a child, to care for a family member, or if the employee themselves has serious health condition.

    An “eligible” employee is an employee who has been employed by the employer for a least 12 months and worked at least 1,250 hours. The 12 months do not need to be consecutive. You are only an “eligible” employee if your employer employs 50 or more employees within 75 miles of the worksite.

    FMLA can be taken on an intermittent basis allowing the employee to work on a less than full-time schedule.

    The employee is entitled to have their benefits maintained, but they must continue to pay their portion during the leave. The employee also has the right to return to the same or equivalent position, pay, and benefits at the conclusion of their leave.

    The eligible employee must provide 30 day advance notice for foreseeable events. The employer is allowed to ask the employee to obtain a certification from a medical provider testifying to the need for the employee to take the leave for themselves or for the family member. Upon completion of the leave the employer is allowed to require the employee to obtain a certification of fitness to return to work when the leave was due to the employee’s own health concerns. The employer can delay the start of FMLA for 30 days if the employee does not provide advance notice, and/or until the employee can provide certification from a medical provider.

    If you and your spouse both work for the same employer. You cannot each take 12 weeks off for the birth of a child, when adopting a child, or to care for a parent with a serious health condition.

    Thank you Lori and Cindy!
    Thank you so much for the valuable information. I am fortunate that I am a teacher and will soon have the summer off, but come August this will be helpful for me. This is good information for my brother who works a traditional 9-5 job. Last night my family and I came to the conclusion that my mom cannot find a full time job right now. Your posts helped me make a case for this decision. Still, with my dad being self-employed and my mom being a substitute teacher, we are in a very difficult financial situation. We will have to find a way to make it work. I'm overwhelmed with social security, disability, etc. and am trying to digest it one piece at a time.

    Thank you again...I'm so grateful!
  • Lylesmyprince
    Lylesmyprince Member Posts: 130
    #9
    jessicalla said:

    Thank you Lori and Cindy!
    Thank you so much for the valuable information. I am fortunate that I am a teacher and will soon have the summer off, but come August this will be helpful for me. This is good information for my brother who works a traditional 9-5 job. Last night my family and I came to the conclusion that my mom cannot find a full time job right now. Your posts helped me make a case for this decision. Still, with my dad being self-employed and my mom being a substitute teacher, we are in a very difficult financial situation. We will have to find a way to make it work. I'm overwhelmed with social security, disability, etc. and am trying to digest it one piece at a time.

    Thank you again...I'm so grateful!

    Another view...
    Jessica,

    Lyle has not been working since June of 2009. He applied for disability and qualified right away due to being a dialysis patient. However, it took 6 more months to get our first check. Thankfully, I make a good living as an Office Coordinator of a large pediatric dental practice full time and partime as the Worship Program Director at our church and we are staying afloat. But...it is so hard to put in so many hours of work during the fight my hubby has for this cancer. My employers are gracious and I get all the time I need. FMLA is still an option for me down the road if I need it. During that time of FMLA you are not required to use any of your vacation or personal time...but you can if you want. So...I'm saving mine for when or if I run out of time. I would encourage your mom to not work full time if you can figure out another way. It is really hard to be away from your sweetie during this struggle. If you have a church or have a local church, I would check into their benevolent fund. This is set up from financial giving of members at the church for people in need. I know that our church does help pay house payments, utilities, etc for those in need. Maybe you can check into that. It is a way that people show God's love in a practical way...and no strings attached. Praying that the Lord guide and direct your family's decisions in this matter.
    Susie
  • jessicalla
    jessicalla Member Posts: 29
    #10
    Lylesmyprince said:

    Another view...
    Jessica,

    Lyle has not been working since June of 2009. He applied for disability and qualified right away due to being a dialysis patient. However, it took 6 more months to get our first check. Thankfully, I make a good living as an Office Coordinator of a large pediatric dental practice full time and partime as the Worship Program Director at our church and we are staying afloat. But...it is so hard to put in so many hours of work during the fight my hubby has for this cancer. My employers are gracious and I get all the time I need. FMLA is still an option for me down the road if I need it. During that time of FMLA you are not required to use any of your vacation or personal time...but you can if you want. So...I'm saving mine for when or if I run out of time. I would encourage your mom to not work full time if you can figure out another way. It is really hard to be away from your sweetie during this struggle. If you have a church or have a local church, I would check into their benevolent fund. This is set up from financial giving of members at the church for people in need. I know that our church does help pay house payments, utilities, etc for those in need. Maybe you can check into that. It is a way that people show God's love in a practical way...and no strings attached. Praying that the Lord guide and direct your family's decisions in this matter.
    Susie

    thanks
    Thank you so much Susie. I appreciate your thoughts and ideas. I'm glad that you and Lyle have been able to stay afloat during this difficult time. Thank you for your prayers!
    Jessica

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