Funny you mention it ivylass, we actually just got the forms, and will be working with the social worker on this. It’s actually one of the first things she thought of… that and the life insurance… and the Ohio laws regarding post-mortem debt obligations. We are preparing for the not so nice things, and hoping for the very nice things.
OK, I really hate to bring this up, but —
Be VERY CLEAR about this heart-threatening treatment. Are they going to give her these drugs with the notion that they will avoid heat damage, or are they going to give her these drugs until heart damage reaches a level they deem unacceptable? In other words, are they going to watch your wife’s heart suffer damage up to a point they choose to be a limit?
It is very important to be clear on this. Certain chemo drugs will almost certainly cause some degree of heart damage. For others, it’s a risk and not so much a certainty. This damage can be permanent. It can be debilitating.
It is easy for someone to decide that heart damage is some sort of fair trade for treating cancer if *they *don’t have to live with the consequences.
Now, your wife may decided the risk is acceptable, or that she is will to trade heart damage for a chance to drive this cancer into remission, and that’s fine - IF she’s informed about the choice she is making. If she isn’t informed…well, I know I’d be outraged if I wasn’t told that a treatment had a high likelihood of leaving my heart damaged, or myself disabled as much from cardiac problems as the cancer. I’m not saying that’s what’s going to happen, what I’m saying is that you two should be very sure you have the full story on this treatment.
Oncologists can be very optimistic - it’s probably on some level essential for them to work in the field. But your wife probably won’t be the best possible outcome. I hope she is, I wish that she will be, but you need to know what usually happens to someone in your wife’s situation (which is, admittedly, harder to know than for a more common cancer but the information is out there). When a doctor starts saying “I had this one patient who–” you stop the doctor and ask “Yes, but what USUALLY happens?”
Again, I’m hoping this is all needless caution, but it’s extremely important that the two of you know what is most likely to happen during this treatment. You need to know not only what (they hope) it will do to the cancer, you need to know what it will do to the rest of your wife.
Good luck and best wishes.
The explanation that we got when we met with her oncologist Friday is that the chemo does have a tendency to bump up the QT interval, explained to me as the time it takes your heart to “reset”. Her normal interview was on the higher side, but they do not anticipate it reaching the dangerous stage, and if it does, they will consider other options. The team also mentioned that the effect would be largely reversed when she goes off the meds, just want to monitor her tightly for the first week.
The weird thing about this particular type of cancer is that it’s so rare, and the medical treatment path is so limited and new, that it is tough to say what the usual is. From what we have seen, about 70% of people respond to the meds they are using in a positive way. it looks like (from the limited we can see) that 5 year survivability is about 70%, and 10 year is about 60… but there are also a number of situations where the survivorship is 18 months. The oncologist has admitted that hers is a challenging case. We hope for the best and prepare for the worst.
It is very odd balancing so much fear and hope.
Just a quick update: meds have been going for 10 days now, with therapeutic dose achieved at day 4. First week of EKG’s actually revealed that the QT interval delay was improving instead of getting worse, so that’s a good thing. negative side effect at this point are fatigue, some light nausea, and a case of thrush, which is making her angry and miserable when trying to eat, but she’s getting a rinse to get that taken care of, so hopefully that will improve over time. She’s getting an EKG today, which is going to be a weekly occurrence for a little while.
On the plus side, Young Miss Striker has returned from her European adventure, so she is able to help out with some stuff around the house, and be a general partner in crime.
If you have any side effects, tell the doctor. Chances are they have something to counteract it.
So far, so good.
The news sounds somewhat encouraging. I’m glad that your daughter is home to help out as well.
I’m glad things are going well so far. Thanks for keeping us posted. Be sure your wife knows we are sending positive vibes her way.
Thanks for sharing the updates. Glad you are all feeling upbeat about things, and your daughter is home.
Good luck. We’re all counting on you 
Continuing wishes for good luck and better health down the road.
I’m glad she’s tolerating chemo! Sending all of you my best wishes.
This one made me literally laugh out loud.
We both do appreciate the well wishes and positive vibes, especially on the mentally/ emotionally tough days. As relatively well that we try to regularly be, there are those times (this morning being one), where I just want to say screw it, and keep driving up I-75 past the exit to go to my office, and see how far into Canada I can get. There are nights that i just want to tell my poker buddies to F*$k themselves for talking about the Vegas trip that we were supposed to go on with them. There are times when I just don’t feel like being okay and soldiering on, and want to tell the people at work that no, this is not a good day, and no, maybe someone else should handle this report, and no, the union can go take a long walk off of a short pier, and that a grown ass adult manager should stop acting like a jackass and actually be professional, and his directors should hold him accountable.
BUT, with Mother’s Day, and Mrs. S’s birthday coming up, the other side of me is saying that I better make these one’s count a little bit more, because who knows.
Thanks for checking in, the kind thoughts and words, and providing me a place to vent, I truly do appreciate it.
(bolding mine) Ooooooh, man, if there was EVER a time when you ought to be able to let people know what ASSES they’re being this would be it. Sucks to be an adult sometimes, doesn’t it! (I’d like to do many of same things, except tailored to my own environment e.g. I’d be heading for a different interstate and I don’t have a union to deal with, and I don’t have the [del]excuse[/del] sound reasons you do).
I haven’t been saying much in the thread but you and Mrs. S. are regularly in my thoughts.
Well, the past two weeks have been an adventure. Mrs. S.'s thrush went away, however, she managed to catch a nasty little bug that landed her in the hospital for an evening a couple of Sundays ago. This was followed by 3 days of on and off fevers, which included heavy sweating every time she broke fever. The thrush generally went away, however, between the dryness caused by her meds, the thrush, and the fever, her mouth was a mess to the point where she was too uncomfortable to eat and drink.
Soooo, at her check up with the oncology team on the Friday before Mother’s Day, we found that she was significantly dehydrated. So we spent about nine hours at the hospital pumping her full of 3 liters of fluid. They were about thisclose to admitting her, because frankly, she looked like crap, and was not in great shape. Not fun times.
However, a few plusses came out of it: she saw a friend that she did an internship with in nursing school, so she did get to see a friendly face; she got a few different solutions for potential future mouth issues; she was made aware of some potential unexpected side effects, such as the dry mouth and dry cough she’s experiencing; and she got the wake up call that she really needs to be careful with eating and drinking. So since then, things have been getting back on track a bit better, and we just think it was a perfect storm of events that led to a rotten situation. We’re looking forward to having a birthday party for her big 4-0 this weekend!
Wow, indeed.
If she hasn’t seen her dentist lately, she should get a check up, just so he knows what’s going on.
Biotene for the dry mouth does wonders. It’s in the pharmacy section of the grocery stores.
Hang in there!
Poor Mrs (and poor you too - I know you hate seeing her feeling that wretched).
There’s something called “Magic Mouthwash” which some doctors prescribe - there are various formulas, but they supposedly tend to contain things like an antacid to coat the mouth, an antibiotic, something for thrush, and so on. There are arguments as to whether they’re effective (one web page says there’s zero solid evidence) but it may be something to look into - just google “magic mouthwash”.
Thank you for the update. Best wishes for the birthday girl. 
They actually prescribed her a “magic mouthwash”- Maalox, Benadryl, and Lidocain, as well as a coating medication for her throat. She also has been using Biotene, which has helped with the general dryness, and mouth has generally held up, so no need for the mouthwash yet. Her energy has really started to bounce back… not to normal, but better than it was, and her weight is holding steady. We’ll take it right now.
Good to hear things are better. Hope it keeps heading in that direction.
How did the birthday celebration go?
Really fun party, lot of friends and family, great cake, and best of all, she had the energy to interact with everyone throughout the evening!
I did make her cry though. She has wanted A Kate Spade bag for a while now, but she hates to spend that kind of money on herself. A few weeks ago she said that she would allow herself to get one after she beat this. Instead, I surprised her with one… which didn’t make her cry she said, but the note I had them put on it saying “I didn’t want you to have to wait” did. And of course seeing her tear up made me tear up!