Coming out of lurking

[Callie]

Hi guys, I have been lurking around here for a couple of weeks now and have decided to come out and introduce my self. I'm Callie and my mom a 62 year old daily smoker was diagnosed with stage IIIb T4N2M0 (9cm tumor) inoperable Squamous Cell NCLS of the left lung May 2018. She is almost finished with concurrent radiation(30) and chemo(7) (carboplatin/taxol). She has been having pretty bad side effects from the treatment to include nausea/vomiting, trouble swallowing and voice changes. She has also started loosing her hair. The Dr's have prescribe her medication for the nausea but she refused to pick it up when we went to the pharmacy for 2 weeks until I finally had to get it for her and now I'm pretty sure she isn't taking them as she should. She had been maintaining her weight until last week when she lost 4 lbs. She sees a nutritionist every week when she see the radiation oncologist and I've bought the glucernia that she is supposed to be drinking 3x a day but she doesn't, I've changed how I cook so she can eat but I only see her eat once per day on regular days and 2x per day on treatment days. She also continues to smoke even though she has been told that if she didn't quit the treatment wouldn't help. The Dr's haven't told us what the next step after this treatment should be, just that they will see her back 8 weeks after the final treatment. 

 I work a full time job, have 3 kids and a husband at home and am now responsible for not only her care but the cost of care too. She has a husband back home who basically dropped her off at M.D. Anderson and said I'll help when I can. I feel like a horrible daughter but I can't wait until this round of treatments is over so we can get some normalcy back in the house. Can anyone give me an idea of what to expect after this 8 week break in treatment? I need to prepare now as much as possible for the missed work and financial down fall. We have made this first round work but I'm quickly running out of paid time off and can't afford to start loosing income. Any information would be helpful.  

Sorry this is so long an rambling,

Callie

[LexieCat]

Hi, Callie, and welcome.

Sounds like you and your mom have a lot on your plate.  My cancer was diagnosed very early as a result of screening, so I haven't had to cope with adjuvant treatments--others here will probably be much more helpful in that respect.

I sympathize with your mom's difficulty quitting smoking--it is a horribly difficult addiction to kick.  Has she ever tried e-cigarettes as a way to stop smoking?  It is the ONLY thing that worked for me.  I think if she's unable to stop smoking any other way it might be worth a shot.  My doctors know that I "vape," but they consider me a non-smoker.  I am getting nicotine--which is NOT what causes cancer; it's the other products you're inhaling that cause cancer--but not the carcinogenic products of burning tobacco.  I've been reducing the amount of nicotine and I'm now at a VERY low level, but I find that the e-cigarettes satisfy the physical/psychological need to smoke.  If she decides to try it, look for a company that is transparent about the ingredients in the e-liquid.  I buy from a company that lab-tests its e-liquid and makes the test results for each batch available online.  The only ingredients in mine are propylene glycol (used in asthma inhalers and the "fog" they use at concerts--generally considered fairly safe for inhalation) and nicotine, which may not be the healthiest thing in the world but certainly preferable to smoking (think nicotine patches) along with a bit of flavoring.

Have you talked with a social worker or a financial counselor at the hospital to see what can be done to help out with the financial burden?  Sometimes uninsured patients can qualify for charitable care.  I've had loved ones avail themselves of those programs.

Hang in there, and do your best to remember to take care of you, too.

[Susan Cornett]

Hi, Callie.  I had concurrent radiation and carboplatin/taxol last spring/summer for a recurrence.  I lost my hair and had a lot of fatigue, but I worked during my treatment and after.  We all react to chemo differently and it sounds like your mom is certainly dealing with more side effects than I did.  Once I completed treatment, my energy started to come back.  I also gained weight during my treatment - some due to steroids, but mostly due to a lot of ice cream.  

I can't imagine the burden on you right now. It's tough doing all that when you have a patient who follows the guidance provided, but when a patient isn't following the guidelines, it's much more challenging.  Do you have any siblings that you can talk to or that can help?  

 

[Callie]

Thanks for the quick reply. @LexieCatShe has an e-cigarette but sneaks around and smokes regular cigarettes. I understand how hard it is to stop as I was a smoker myself and quit with the help of the e-cigarette and know that they can be very useful tools. As for the financial aspect, her health insurance is amazing and she pays nothing out of pocket for her health care. She is disabled and has been on SSI for many years due to multiple back surgeries and diabetes. It's all of the other parts going along with treatment like commuting 50 miles each way Monday thru Friday, parking cost, prescription cost and all the other things that go along with her care. Her husband has given her about $150 in the last 2 months and she has spent it on tea and smokes everything else is our responsibility. 

[Callie]

I can't imagine the burden on you right now. It's tough doing all that when you have a patient who follows the guidance provided, but when a patient isn't following the guidelines, it's much more challenging.  Do you have any siblings that you can talk to or that can help?  

Thanks for your reply Susan, I have one older brother who lives in Nevada. He will be here the day after she finishes treatment for the first time in almost 2 years. But he doesn't want to hear any negative about mom. We lost our dad 8 years ago due to cancer and now doesn't want to hear about anything bad related to her health. 

 

[BridgetO]

Hi Callie and welcome!  You're in a tough spot. I''ve been through some stuff with a mom having serious medical issues and  (shall we say) not always cooperative  with what she needed to do and not able to be imdependent. But it was nothing  as severe as what you're going through. I can feel your frustration.

he doctors may not know yet what the next step will be until they see how the chemo/radiation worked.  The only suggestion I can think of is to ask your mom's husband to send some money directly to YOU to help pay for the things you're having to pay for. Or asking your brother to chip in financially. He wouldn't need to hear anything specific about her health, just about financial burden on you.

Hang in there!

Bridget O

[Callie]

5 minutes ago, BridgetO said:

Hi Callie and welcome!  You're in a tough spot. I''ve been through some stuff with a mom having serious medical issues and  (shall we say) not always cooperative  with what she needed to do and not able to be imdependent. But it was nothing  as severe as what you're going through. I can feel your frustration.

he doctors may not know yet what the next step will be until they see how the chemo/radiation worked.  The only suggestion I can think of is to ask your mom's husband to send some money directly to YOU to help pay for the things you're having to pay for. Or asking your brother to chip in financially. He wouldn't need to hear anything specific about her health, just about financial burden on you.

Hang in there!

Bridget O

Thank you BridgetO, It's almost like she doesn't want the treatment to work so she will continue receiving the attention she is getting now. I know that sounds horrible but the comments she is making is like she is sabotaging her treatment so she can stay with us. She has commented about wanting to move in with us for the past 6 years when we moved 3 hours away for work. I just don't understand.

As for asking her husband for help, they are in a way worse financial situation than we are due to overspending and 000. I have asked my brother for help, he said he's saving everything he can to make the trip here to see her so she can meet his 1 year old baby. So he can't help out. My aunt sent some money at the very beginning to help out and it was very much appreciated. And her daughter helped out by taking mom to the hospital for 1 of her days that was all day appointments. 

[LexieCat]

I still think it might be worth it to connect with a hospital social worker, or you might contact this agency: https://hhs.texas.gov/services/aging/long-term-care/aging-disability-resource-center/are-you-a-family-caregiver.  Even though your mom's only 62, her disability might qualify her (and you, as her caregiver) for assistance with things like transportation.  Just a thought.

[BridgetO]

American Cancer Society has a program that provides rides to treatment. Here's a link. https://www.cancer.org/treatment/support-programs-and-services/patient-transportation.html. They may know of other financial resources also. 

 I do understand about sabotaging treatment. When my mom was recovering from a broken hip, I took time off from work to take care of her. She lived about 3 hours away by air. Fortunately I had a lot of accrued sick leave that i could use for family medical, but it certainly wasn't unlimited. Mom didn't want to do things she needed to do to get better, like doing her physical therapy exercises and walking around the house. She preferred to have me do things for her, saying stuff like she would do her exercises when she felt better and that if I wouldn't do things for her (like get a glass of water so she wouldn't have to get up}, that meant I didn't love her!  She also said she just needed to rest.

I decided  I had to get tough with her.I assured her that I did love her and that if I didn't I wouldn't be taking off from work and leaving my home to be there for her. I told her that I was there to help her get back on her feet and she needed to work  on it and if she just wanted to rest, she could go to a "rest home".  Her choice. I felt like Nurse Ratched (did you see One Flew Over the Cuckoo's nest?). It worked, she got more motivated to take care of herself, but it still continued to be a somewhat rocky road. Because I've worked a lot with people with disabilities, I know that while it's important to be kind, sometimes being too "nice" and "helpful" isn't always the best thing for the person. So having had that experience made it a little easier to to be tough. She did get back on her feet and was grateful in the end (but not always in the process).  Another thing that helped was that somewhere during that time she got on anti-depressants.

Wonder if your mom is depressed? Those of us with serious illnesses often are. I know that antidepressants help me to stay on an even keel (more or less).

Hang in there ane remember to take care of yourself, too.

Bridget O

[Steff]

Callie,

Sorry for my tardiness in joining this convo.... I too am a caregiver for my mom. We differ in that my mom does what the docs and I tell her to do. Luckily she had quit smoking about 7 years prior to diagnosis so she didn't have that to contend with too. I live about an hour away from my mom and was there every step of the way when she was first diagnosed and thru her initial treatment. It was really hard to balance life at home and life of a caregiver and I really sucked at it. But we all made it through.

You asked what to expect after treatment...my mom bounced back pretty quickly when chemo stopped,  both times. Although she tires easily, she is back to caregiving for my dad and running the household. 

As far as the financial part of things, my parents are on a fixed income too. They too have high Rx costs and secondary insurance premiums. I help pay various bills as I can so the weight of unpaid bills aren't a worry for my mom. But we can only do so much. To help with travel costs, Lexie and Bridget have great suggestions. Another option is to see if there is a local nonprofit that helps those with cancer. We have one in our small town and they help with all sorts of stuff, including transportation costs. There also may be an option for a medical bus to transport her to appointments. My local one only costs $2 each way and another one costs $10 to go 3 hours away. No parking fee has to be paid that way!!!

I hope some of these suggestions might help. You are in a tough spot and honestly, it doesn't get easier, it only changes and we can only change how we deal with it. It took a few years for me to figure it out, but I finally got better at sharing my time where I needed to. 

Take care,

Steff

[BridgetO]

Hi Steff,

You are fortunate that your mom is cooperative! In fact, the model patient. Not all of us are so lucky.It's hard enough being a caregiver without having addtional challenges of the cared-for person being "difficult" . I guess having cancer can make anybody difficult!   Including me, at times, but I hope not all the time.

FYI to others, I met Steff's mom Debbie at the Hope Summit in DC and she is "as advertised",  nice person to spend time with, a real sweetheart!

Bridget 

[Callie]

Thank you for the information Lexicat and BridgetO, I will definitely look into the programs. 

I took mom home Friday night so she could spend the night with her husband and could visit with family. She seemed to have a nice visit with grandma and my aunts Saturday. My grandma is 96 and is having a hard time with moms diagnosis. She lived with mom until mom got sick and is now living with my aunts. Her and her husband put my grandma in some pretty significant debt before mom was diagnosed. I truly believe that mom has been sick for a long time before the tumor was found. In the past year almost 1.5 years she lost almost 100 lbs. She told me it was due to her diabetes medication but I'm not so sure now. She had also been seeing a shoulder Dr for pain and pulling in her left shoulder. He gave her injections, but I don't know if he every did any imaging to find out the cause due to her story changing, first she said he did an MRI then he did x-rays so who really knows. Any way it goes, her cancer was found by pure luck in a chest x-ray after being sent to the ER for her heart racing. 

BridgetO I'm sure mom is even more depressed than usual and maybe we should talk to her Dr about increasing her medication. Per mom, She has a history of manic depression so maybe that is something we should look into further. Part of me is thinking that she might have something going on with her neurologically. She will tell strangers my whole life story, at least the bad parts. Today my daughter took her to radiation and she told complete strangers that Allie was a princess who can't do anything for her self. Now keep in mind Allie is 19, working a full time job, taking full time college courses on line and helping me 2-3 days a week with getting mom to treatments. She also gets mad at Allie for not taking her shopping after radiation because Allie has to go to work. Yet she never ask me to take her anywhere, probably because she knows I won't let her buy cigarettes and other things she doesn't need/can't afford. 

Sorry again for the rambling, 

Callie 

[BridgetO]

Hi Callie,

I does sound like there might be something going on with your mom either mental health of neurological. Definitely worth checking with the doctor. It must be hard for Allie to support her grandmother when grandmother is behaving like this. Hang in there, all of you.

Bridget O