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Change is Hard

knitgrl

By knitgrl,
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knitgrl

knitgrl

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So, dh was laid off today. Under more normal circumstances, it wouldn't be too bad. We have savings. We can tighten our belts. But I am doing cancer treatment that costs thousands of dollars a month. And dh is a software developer, and that field does not have the opportunities that it once did. He has always worked remotely, but those jobs are really hard to come by now. We live in a rural area, where our families have lived for generations. I guess if we had to move, it wouldn't be the end of the world, but I really, really don't want to. That is all.

 

UPDATE: Dh accepted an offer on Friday, and right now is busy filling out all the forms for his new workplace. The benefits are better than at his old job, and there is actually a career path for him to advance in that isn't management. He doesn't start for a few weeks, which is nice in that he will be mentally well-rested before starting this new position.

I want to thank all of you for your prayers, thoughts, and support. I generally run on an even keel, so when I wasn't doing that and didn't have the option of crying on someone's shoulder in real life, I am so grateful I could come here and vent. It was a bit of a sanity saver. Thank you.

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knitgrl
knitgrl

So, dh was laid off today. Under more normal circumstances, it wouldn't be too bad. We have savings. We can tighten our belts. But I am doing cancer treatment that costs thousands of dollars a month.

knitgrl
knitgrl

I just need to vent for a little bit. On the upside, we will theoretically have health insurance through the state come January. I am sooo grateful a person from the hospital was able to apply fo

knitgrl
knitgrl

I talked to dh this afternoon about my stress levels, and he suggested I just stay home tomorrow. The proposed schedule I would have found to be a lot even before cancer, but now staying that busy for

Heartstrings

Heartstrings

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I’m not dealing with cancer, but job wise I’m in the same boat.  We’re probably going to have to move and I hate it even if it’s not the end of the world.  I love my house and my neighborhood and want to stay here but we have to have an income.    
 

We’ve been toying with the idea of a reverse recruiter.  It’s expensive but if it works it might be worth it.  

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Heartstrings

Heartstrings

Posted
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18 minutes ago, knitgrl said:

Huh. I have not heard of this. I will have to do a little research to see what it's about.

I only mention it because the one we're considering has an 8-week waiting list and I'm really wishing we had at least known about it all sooner.  The current job market is so crazy.  

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knitgrl

knitgrl

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2 minutes ago, Heartstrings said:

I only mention it because the one we're considering has an 8-week waiting list and I'm really wishing we had looked into it sooner.  

I appreciate you sharing your experience. I hope things work out so you don't have to move.

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WildflowerMom

WildflowerMom

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I'm so sorry, knitgirl.    Last year there was a thread by another poster whose dh had lost his job, as well.   I bookmarked that thread because we could end up in the same boat, too, one day and it had useful info in it.   I'm linking it below.   Hopefully it will be of some help to y'all, too.  Praying for your family...  💛

 

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Arcadia

Arcadia

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4 hours ago, knitgrl said:

But I am doing cancer treatment that costs thousands of dollars a month.

Do you know when your insurance coverage ends? Usually companies would extend coverage a few months pass the official last day of work. My previous oncologist was very good at working treatment and prescription schedules around insurance coverage. He would order 6 months worth of tamoxifen and then my pharmacy is very fast at issuing refills so I could make 6 walking trips to my pharmacy within a month and get 6 bottles. Then he would order another 6 months so I could easily get 9 to 12 bottles in three months. Same with things like MRI and herceptin infusion, my oncologist would try to plan around insurance if he can. 

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Arcadia

Arcadia

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7 minutes ago, J-rap said:

If you have insurance, I don't understand why cancer treatments would cost thousands of dollars per month.

It depends on OP’s out of pocket maximum. My MRI cost me $2.160 out of pocket and my out of pocket maximum is $6k. When I had my cancer treatment, I easily hit my out of pocket maximum in a few months. Now that it is routine followups, I don’t hit my out of pocket maximum anymore. 

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knitgrl

knitgrl

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8 hours ago, J-rap said:

Oh I'm so sorry...  If you have insurance, I don't understand why cancer treatments would cost thousands of dollars per month.  Our health care system seems really mixed up...

Our health insurance renewed on Nov. 1. Over the past year, I've had chemo and radiation, so we met the deductible pretty quickly. I haven't really seen any bills since Jan. or Feb. However, now that we are on a new cycle, we have had to co-pay for my monthly chemo pills. My understanding is that our insurance is billed $14,000/mo for them. We now have to pay $190. The company that manufactures this drug has a discount card that would reduce that price. However, in exchange for that discount, you have to waive ALL of your privacy rights. The notice said that they might receive more of your medical information than what they really need, and they will sell all of it to whomever they choose. Only the super rich can afford privacy.

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knitgrl

knitgrl

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8 hours ago, Arcadia said:

Do you know when your insurance coverage ends? Usually companies would extend coverage a few months pass the official last day of work. My previous oncologist was very good at working treatment and prescription schedules around insurance coverage. He would order 6 months worth of tamoxifen and then my pharmacy is very fast at issuing refills so I could make 6 walking trips to my pharmacy within a month and get 6 bottles. Then he would order another 6 months so I could easily get 9 to 12 bottles in three months. Same with things like MRI and herceptin infusion, my oncologist would try to plan around insurance if he can. 

This is a small company, and they have farmed out 90% of their HR to some other company. What you get is what you get. So, one month's severance and health coverage until the end of the year.

I'm not sure about the prescription piece. Under our current coverage, my pills come from an outside pharmacy that mails them to me each month. It's worth asking. Apparently, New York has a medicaid sort of program for cancer patients, so probably things will work out with that. It's just stressful in the meantime.

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scholastica

scholastica

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2 hours ago, knitgrl said:

This is a small company, and they have farmed out 90% of their HR to some other company. What you get is what you get. So, one month's severance and health coverage until the end of the year.

I'm not sure about the prescription piece. Under our current coverage, my pills come from an outside pharmacy that mails them to me each month. It's worth asking. Apparently, New York has a medicaid sort of program for cancer patients, so probably things will work out with that. It's just stressful in the meantime.

Please look into COBRA when it is offered. It is often cheaper than exchange plans even though you pay the full premium.

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Arcadia

Arcadia

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2 hours ago, knitgrl said:

My understanding is that our insurance is billed $14,000/mo for them. We now have to pay $190

I’m so sorry about your insurance plan. My tamoxifen is covered in full so I don’t need to pay.

2 hours ago, knitgrl said:

I'm not sure about the prescription piece. Under our current coverage, my pills come from an outside pharmacy that mails them to me each month. It's worth asking. Apparently, New York has a medicaid sort of program for cancer patients, so probably things will work out with that. It's just stressful in the meantime.

I can use Express Scripts which will mail them to me probably monthly. However, my prescriptions are sent to the pharmacy which is ten minutes walk away as I rather pick them up myself. I could also collect my prescriptions from other pharmacies. 
The cancer center usually have social workers on hand. Might be worth asking front desk for the contact and emailing the person for more information. 

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Pawz4me

Pawz4me

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4 hours ago, knitgrl said:

Our health insurance renewed on Nov. 1. Over the past year, I've had chemo and radiation, so we met the deductible pretty quickly. I haven't really seen any bills since Jan. or Feb. However, now that we are on a new cycle, we have had to co-pay for my monthly chemo pills. My understanding is that our insurance is billed $14,000/mo for them. We now have to pay $190. The company that manufactures this drug has a discount card that would reduce that price. However, in exchange for that discount, you have to waive ALL of your privacy rights. The notice said that they might receive more of your medical information than what they really need, and they will sell all of it to whomever they choose. Only the super rich can afford privacy.

Go talk to the people at your cancer center. They should have someone who can give you advice. DH's cancer medications would cost us thousands of dollars per month (after insurance and until max OOP/deductible is met), but Cancer Services here has always been able to get him grants from places like Cancer Care or Healthwell. They do ask for income verification (mainly your latest tax return) as there are income caps. But our income is quite healthy and we've never run into a problem qualifying, and from what I understand most foundations have increased their income caps even more in the past year or so. Our local Cancer Services group has always handled applying for the grants and having the amounts credited to the specialty pharmacy where DH gets his meds, but from what I understand individuals can apply for grants themselves. We have always been told that in the worst case scenario of running out of grant money and not being able to get/qualify for a new one then that is the point they'd go to the drug manufacturer. But it may vary depending on the drug and the manufacturer.

And honestly I have no idea whether getting the grants has entitled anyone to his medical records. I don't mean to be snarky, but since his diagnosis that wouldn't even ping our radar as a concern (again, truly not meant to be snarky, just a different perspective). If anything a drug manufacturer could learn from his records would help other people with cancer, then have at it.

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knitgrl

knitgrl

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There were rumors of a layoff for a couple of weeks, so we talked to a social worker at my last infusion, in order to be somewhat proactive, but they couldn't do anything until it actually happened. So we have numbers and contacts to get started with.

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knitgrl

knitgrl

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2 hours ago, Pawz4me said:

And honestly I have no idea whether getting the grants has entitled anyone to his medical records. I don't mean to be snarky, but since his diagnosis that wouldn't even ping our radar as a concern (again, truly not meant to be snarky, just a different perspective). If anything a drug manufacturer could learn from his records would help other people with cancer, then have at it.

@Pawz4me, thanks for adding this. Dh is vigilant about digital privacy and safety, and sometimes I forget that there are other opinions besides either being vigilant or ignorant/stupid.

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Mrs Tiggywinkle Again

Mrs Tiggywinkle Again

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https://www.health.ny.gov/diseases/cancer/treatment/mctp/
 

You should qualify after January 1 based on lack of income if you have a qualifying cancer. Both (your local major hospital systems—erased for privacy) have fantastic social workers who will help you get on every program there is.  Despite my general annoyance with living in New York, we do have pretty decent healthcare programs.

And since I’m not really far from you, I’d love to bring or send you dinner one of these nights and however else I can help.

Edited by Mrs Tiggywinkle Again
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knitgrl

knitgrl

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I just need to vent for a little bit.

On the upside, we will theoretically have health insurance through the state come January. I am sooo grateful a person from the hospital was able to apply for us and get us through the hurdles. It took two days to do it, and at one point I was sure I was in a Franz Kafka story. As we were finishing up the application process today, the system crashed at least three times.

This morning, I got a voicemail from my mother saying she needs me to set up a 3 way call between her, my sister, and me. My mother's mental health is not robust, and I can tell she is wound up about something. My sister works full time, and I texted her to see if she can do the call later today. I texted both of them proposing a specific time, and my mother has not responded. So, who knows? Maybe I get to sit with this dread of a shoe dropping for days, because...

Tomorrow is chock full. Dd13 has a chorus concert in the city in the morning. Ds10 has music lessons in the city in the late afternoon. The evening is capped off with a niece's birthday party, and they live in between us and the city. We have family passes for a few museums and will bide our time there before our other engagements. We do church Sunday morning and the family cookie party is at 1pm and I am supposed to figure out how to bake cookies between now and then, and at this point, I understand I am just whining. I can get the dough made today and put in the fridge and probably something will work out for actually baking them. I am almost to the point where I buy cookies from the store because I just don't care.

Things seem harder to me because dh doesn't want anyone to know he got laid off. We haven't told the kids. Nobody in our family knows. So I have to pretend everything is normal and ok, and I am honoring dh's request (well, except for here), but it is hard for me. Because if it was up to me, I would seek support and just blab it to everybody.

I am not hanging by a thread yet, I probably have a good five more to go before I get to that point.

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Corraleno

Corraleno

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I'm so sorry knitgrl. I hope you can persuade your DH that his pride should not take precedence over your own physical and mental health. It seems like insistence on secrecy is making an already extremely stressful and unfair situation even more stressful and unfair to you just to reduce his own sense of embarrassment. Please take care of yourself and don't be afraid to ask for what you need.

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kathyl

kathyl

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Aww, I understand wanting to keep things private.  But sometimes it's just better to get it all out in the open.  I mean, for all he knows he could make important connections for a new job by getting it out there that he's looking.  Not to mention how much it would help you to talk about it to people. 

{{Hugs}}

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knitgrl

knitgrl

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I talked to dh this afternoon about my stress levels, and he suggested I just stay home tomorrow. The proposed schedule I would have found to be a lot even before cancer, but now staying that busy for 11-12 hours in a day would wipe me out and take me probably two days to recover. I saw dd perform with the chorus last week; tomorrow is a second venue of the same material, so it's not like I'm completely missing it. I was able to make the dough this afternoon (a pleasant distraction from waiting for the phone call with my mom) and I can bake them tomorrow and wrap gifts without anyone at home. So, I feel better about tomorrow. I might even make it to the birthday party.

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knitgrl

knitgrl

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So, my mother is in her mid-70's. She had my sister and I on pins and needles all yesterday to announce that she can't do Christmas because she is having intestinal issues that she is embarrassed about. She was having issues back in the spring. Apparently, none of it has resolved itself, and has gotten worse. She has diarrhea most of the time, and the doctor told her to eat bran flakes and drink Metamucil, which seems counter intuitive to me, but I'm not a doctor. It's gotten to the point where there is sometimes blood, and she can't lift a 5lb bag of sugar or take her dog for a walk without having to go right away. I asked her if she's called the doctor about it. No, she hadn't thought of that. She was just going to wait to talk to the doctor at her appointment in mid-January. 🤦‍♀️

In the course of the conversation, she recounted in a justified way, how she was snippy with the receptionist. Her cynicism and hostility toward the medical profession was considerable, which I totally get, but you don't take that out on the people you want to have help you. Receptionists are the first line in the medical bureaucracy and can help you out a lot if they like you. I can imagine that if they don't like you, you might not get as much help.

For some background, my step-father passed away 20 years ago and she really hasn't been the same since. Ten years ago, she used to live 10 minutes away from us. Then she decided to move an hour away in a nearby city, (in a house where the only bathroom is on the second floor 🙄). So, we don't see her very often. If I want to know how she is doing, I have to call her because she very rarely calls us. She has social anxiety, even with family, and has an incredibly low sense of self-worth. She has been on some variety of psychotropics since her husband died, most of the time without any sort of counseling whatsoever.

A few years ago, her GP connected her with a psychologist/psychiatrist? who would oversee her meds and give her counseling. She met with her and it was a great fit. She was upbeat and had a positive outlook. She saw her for maybe six months, and then one time, she made my mother sit in the waiting room for 20 minutes. And my mother left and never went back because "she shouldn't be treated like that". She has things to do, she said. The only thing she has in her life is an anxious dog that she uses as an excuse to not come out and see us. Even for her grandchildren's birthday parties. She has zero concept of how lucky she was to have the sort of help thousands of people can only wish for.

A month ago, she said she was considering getting rid of her car, mostly because she is too stressed about what to do about the lease, which is up in the spring. She does not live in a city that has great public transit. She was totally fine with the idea of pretty much never leaving her house again.

Which brings me back to her medical condition. I'm not even sure she wants to get better. Which feels like a terrible thing to say. And I feel like I should carry the torch and be her advocate, but I just do not have the bandwidth to save her from herself.

 

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