Hello. I'm new to the Group. My dear husband has cancer

[OKNancy]

I am the wife of someone newly diagnosed with cancer.
I've read a lot of the posts here already. My husband has pretty much the same thing as alfredo.
He is stage IV cancer base of his tongue caused by hpv.
As he says "the 70s have come back to haunt me"

So far it's been tests, and biopsies, and more tests.... and bills and more bills.

Yesterday they did a biopsy on his thyroid because the first CAT scan he had showed a small something. Our radiology oncologist said probably nothing but did it out of an abundance of caution.
They kept him waiting on the gurney an hour and then used only a local....
long story short when he came back into where I was, he started crying like a baby.

He is only 63 and just the sweetest thing.

He will have 33 radiation treatments, and 3 powerful chemo treatments

He will have a feeding tube and a port put in next week I think ( meeting that surgeon next Tuesday )

So far my duties are to keep track of everything. I'm making a fun notebook for us. Of course they have given us all sorts of stuff and we have our own oncology nurse navigator ( she's really pretty) but I want to do a lot of this myself.

I am worried about money of course. We have a policy that has a 6450.00 out of pocket level and my husband works in construction. No sick leave, no paid insurance... hourly wages.

I'll probably post here just to clear my head. Thanks for those of you who have already posted in this group.
It's been helpful.

[woodsprite]

1. Sending many prayers and much love to you and your husband.

It's difficult when someone you love is hurting and afraid. Do you have a support group near you for caregivers? That helps -- a lot. Especially if you need someone to talk to and don't want to upset your husband with your own questions. You always have this group, and someone is here pretty much all the time, but it's good to have real, live, in-the-flesh support for yourself as well. I found with my parents that being the person who kept track of and researched things helped me to understand, gave me a sense of some control, and served to keep my mind occupied.

Wishing you and your husband the best possible outcomes.

[OKNancy]

2. thank you so much

I do have three younger sisters who I talk to. Well two really as one of my sisters is fighting her on health battles.
Right now no support group on the outside. I swear, I don't want to have to get dressed and go out and drive some place any more than I do now! LOL

Today is the first day in a while where I don't have any doctor meetings, or cancer related chore to do.

----

Yes, I will enjoy doing my notebook. I've done a lot of research.

I'm titling it - Robert's Craptastic Summer - Starring Robert XXXX and Nancy XXXX
co-starring Dr. Charles Stewart, Dr. Sack.... etc you get the idea.

[sinkingfeeling]

3. You need to be the one that writes everything down and act ad

his advocate. The treatments can make the patient kind of out of it and overwhelm him. I take it there will be no surgery. The radiation can cause a lot of discomfort. Blisters in the mouth and throat, loss of taste, loss of saliva, problems with teeth and jaw bones, and inability to eat. Everybody responds differently. It's hard. See if there's a local SPOHNC chapter. They were a big help to me, since the members are going through the same issues.

I had Stage IV cancer on my tonsils almost 8 years ago. Mine was probably HPV as well, but they didn't test for it back then.

Ask me anything. Peace.

[OKNancy]

4. thank you

no chapter near me.

Yes, I am the one taking care of all the appointments, literature, diet stuff...

I've always been the one to pay all the bills anyway, so that will be no different.
If someone asked what our mortgage payment amount was, or insurance, etc. he would have no idea.

[sinkingfeeling]

5. I'm in Fayetteville AR. We have a guy who lives in Stillwell and

comes to our SPOHNC meetings. He's had oral cancer 6 times!

[OKNancy]

7. 6 times.... that's terrible

What the chemo doctor said was that they were going to really give Robert the strongest treatment possible so that they get it all the first time and it won't come back. I think it is because my husband is healthy otherwise.

[Solly Mack]

6. I'm sorry to read this but please know you can unload here with us.

and you will need to unload from time to time.

sinkingfeeling is right, be the advocate. Speaking as the patient, I know there were days when I didn't have the strength to speak up for myself.

Don't forget to take care of yourself during this time. You'll need it too.

Keep us posted and know that we are all here for you.

[PennyK]

8. Something to keep in mind

I found that the doctors don't want to tell you about all the side effects you may get I suggest you ask, and also ask what over-the-counter meds he'll be OK to use. I ended up waiting three days to find out if I could take Tylenol for a headache, and I also had to wait to ask about how to treat diarrhea.
I ended up with four or five different prescriptions, just for dealing with various side effects (this is just from chemo), and things would have gone better if I had been more prepared for dealing with it all.
You will need to be as organized as possible. Stock up on everything you need around the house and make sure to take care of yourself!

[OKNancy]

9. thank you. I think they have been very open about side effects

but what really gets my husband is when they say " everyone is different"

We have given us so much literature, and a big book of recipes "Eating Well Through Cancer".
I think we are OK

Our oncology nurse navigator said to call her or email 24-7 if we need anything. This sounds like a nice service.

----
Just an off-note:
I've noticed that the cancer area of the hospital and the off site cancer center run by St. Francis seems to be really well-funded.
It's much fancier than the rest of the hospital.

[alfredo]

10. HPV caused cancer is easier to treat than cancer caused by smoking.

I have had the same thought about the Seventies. My doctors said I could have contracted the virus in my mother's birth canal.

Stay strong, but take care of yourself.

[alfredo]

11. Is he a veteran?

[OKNancy]

12. No

[alfredo]

13. start looking for state and federal programs that can help defray costs.

Of course the ACA helps.

[slipslidingaway]

14. Sorry to hear you and your husband have joined the sucky club ...

there is just no delicate way of putting it.

Keeping track of results, reading and questioning without totally freaking out is helpful. I always loved the suggestions to not google and then in the same breath we are told to ask questions, how can we ask questions with zero knowledge?

Google, process and discard the irrelevant info, but do not hesitate to ask questions, always question, the least that can happen as caregivers is we look foolish and we subject our loved ones to another test.

One foot in front of the other!

We're looking towards our eighth year of out of pocket maximums that began over 11K which have been reduced to over 8K with increased annual premiums, still we have retirement savings, unlike many others, so we are fortunate. Retirement is not as expected.

Chin up and clear your head whenever you feel the need, wishing you and your husband the best. We're in this world together.

[OKNancy]

15. thank you

We have ChemoEducation today.

He still hasn't started radiation or chemo. I did call our nurse-navigator today and told her "let's get this show on the road"
She is really helpful, as she said she passed my message along and they will be calling us to come in for our plan tomorrow.

His port and PEG are being put in on August 22.

[slipslidingaway]

16. Hope all is going well, waiting is very difficult, continue being a polite pain though ...

in the meantime hopefully you both can take some walks to maintain your husband's strength. If you can take in a movie and/or have dinner out as a distraction.

[dixiegrrrrl]

19. Nancy, I just found this....

I have posted here about my breast cancer.

Wanted to tell you..I had my port put in Aug. 22! Musta been a good day for ports.
And still paying that off.

Most important...I wrote about how to get expensive cancer drugs for pennies, here:

http://www.democraticunderground.com/11463920

I am like you, the one who does the bills and organizing and etc
and like you, my dear husband would be lost.
but I had to make him a binder with all the info. on bills and etc. just in case.
It is tucked away for now, thank god.

I kept 2 folders.
One for tracking all the bills, account numbers, checks paid,
and one for tracking all the visits and appts and a short note of what was covered
so I could match up the Medicare reports of what they paid vs. the bills I actually got.

One time I was overcharged by a provider, so I started keep track.

Hope you will continue to share how you guys are doing, and any useful tips, etc.

[OKNancy]

20. good morning... I stopped writing because all I felt like doing was complaining

I obviously had/have "caregivers syndrome" LOL

Husband is finished with treatment and all seems to be going fine. Our ( my) biggest problem now revolves around eating. He finished his treatment early October. He still really complains about lack of saliva and things tasting bad. He really doesn't like meat at all.
He just had a port flush and labs yesterday and the test results were posted already. Everything normal.

He uses the feeding tube once a day just for me to make sure he gets at least 600 calories ( and for his daily flush)

After we met the deductible, everything was paid by Blue cross except for the feeding tube formula. I really hit the roof too. I told the doctor we didn't want it unless it was covered, and looking at the yellow sheet we got in the hospital ( the day the tube was inserted) it looked like it was. So in a few days, we got a bunch of boxes of Fibersource. Almost two months later we get a bill for 766.00!
I hadn't opened up half of the shipping boxes even so I asked them if I could return them for a refund. "No, we don't know if you stored them correctly...blah blah blah". Here is what made me so mad: the same product is 1/4 the price on amazon. All Saints price was 3.98 per and amazon was 1.04. If anyone needs a link for fibersource on amazon, just ask, although it's easy to find. I just ordered one more box from them and it is exactly the same.

As far as drugs go, we haven't had to pay very much at all. I have been keeping track and we all total have paid $8,900 out of our pocket this year and Blue Cross have paid $198,000. Our hospital allows you to pay it out, so I did some on a plan, but my elderly mother, bless her heart, and some other friends ( Democrats at Bill's site!) gave me some money to help cover the costs.

Oh, and he took early Social Security. We had no idea what would happen. He plans to go back to work as soon as his feeding tube is out. If he had an office job, he could probably work now, but he is a house painter, and a good one, so he needs more recovery time. We will take the hit/penalties on the SOcial Security if necessary. He will still come out ahead. In two years, when he turns 66, we won't have to worry about penalties.

..... all this good news depends if I don't go nuts in the meantime .... I'm retired ( I'm 4 years older) and he is driving me crazy.
Very normal, I know, with retired couples.

[Ms. Toad]

17. Look into FMLA.

Even without sick leave, FMLA can protect his job for him.

(I've been pushed to complete the forms - even though I'm pretty sure my job is not at risk (my name keeps popping up as MPV, of sorts, where I work - but our HR department keeps pushing me to complete the forms purely to ensure that when this is all done I have a job.)

As to insurance - if you have regular meds, and a 90-day mail order plan, refill everything for 90 days as close to December 31 as you can since you're likely to hit the max for this year (at least). Take advantage of the meds while they are "free."

You are wise to keep track of everything yourself. I fired my first cancer team because - even with a fantastic nurse navigator - their administration sucked. Big time.

[OKNancy]

18. Thank you for posting.

I'll look into the FMLA. We aren't worried about him keeping his job. His boss will gladly bring him back when he is able. But his boss just can't afford to pay him when he is not on the job ( house painter.) My husband has worked for him for 25 years. He's what you would call a master-painter. Does rich people's homes and re-models. The boss doesn't want to lose him.

Good idea on the meds!! - We haven't been prescribed anything yet. Although I guess we will. He starts radiation and chemo next week.

Boy are you right about keeping track of things. I was on the phone two hours with scheduling. As it is now, Robert will have his first chemo treatment without his port. He gets his port and feeding tube 4 days after his first chemo.

[cpamomfromtexas]

21. Prayers for you and husband and for all cancer patients and those that love them.

[OKNancy]

22. Oh my. The new post today made me read through this thread again

My sweet husband didn't make it. He died Nov. 10th 2017.
I have good days and still some bad ones. Today I thought, " I think I'm falling in love with my dead husband"
What I mean is that I feel like after 35 years of marriage that I didn't appreciate him enough.

I'm doing OK all in all.