Venting

SharonH56

The last few months have been so difficult. In November my husband ended up in the hospital. The immunotherapy basically caused his thyroid to implode, meaning he no longer has thyroid function. He's on the synthetic thyroid medication that causes queasiness and nausea, so he wasn't eating or drinking - and when he did he vomited - so he had severe dehydration. 

Well, that's a vicious cycle and last week he was admitted to the hospital again for severe dehydration, only this time his blood pressure was down to 70/40 and his veins were so deflated that they needed to use an ultrasound to find a vein deep in his arm that they could use.

He was supposed to be starting new medications this coming Monday, a clinical trial of navitoclax, dabrafenib and trametinib, but since this happened I'm not sure what they'll do. It's all very tense.

I don't know what anyone did to deserve this. People tell me things like "take it one day at a time", and "God doesn't give you more than you can bear", and while they mean well, I want to smack them in the face. Every day is a crap shoot - will he feel nauseous today? Will he be puking? Will he have energy? Will it spread any more than it already has? Can I get water into him? Will he end up back in the hospital and when?

Sorry, but I just had to vent. Only you guys understand what it's like. Thanks for listening.

Sharon

Noellesmom

Not to be too simplistic

But what are they giving for nausea?  And are they offering bags of fluid for the purpose of preventing dehydration?

SharonH56

Noellesmom said:

Not to be too simplistic

But what are they giving for nausea?  And are they offering bags of fluid for the purpose of preventing dehydration?

They gave him some pills for

They gave him some pills for the nausea, but they don't really work well. When he was in the hospital for 3 days they constantly gave him IV fluids, and when he was discharged they just told him to "drink a lot". Well, it's easy to say but not so easy to do when your stomach threatens to reverse itself. 

Tomorrow morning we see the oncologist. I'm going to ask her if there's a patch or something stronger she can give him for the nausea. I'm so afraid he'll end up dehydrated again and there doesn't seem to be much I can do about it, other than harass him to drink and push fluids at him. 

david54

SharonH56 said:

They gave him some pills for

They gave him some pills for the nausea, but they don't really work well. When he was in the hospital for 3 days they constantly gave him IV fluids, and when he was discharged they just told him to "drink a lot". Well, it's easy to say but not so easy to do when your stomach threatens to reverse itself. 

Tomorrow morning we see the oncologist. I'm going to ask her if there's a patch or something stronger she can give him for the nausea. I'm so afraid he'll end up dehydrated again and there doesn't seem to be much I can do about it, other than harass him to drink and push fluids at him. 

Hi Sharon. There should be a

Hi Sharon. There should be a patch that can give better relief. But more than that, I hear your frustration and fear. I understand what you mean when others give platitudes, albeit we'll intentioned. If I had a dollar for every person that has told my wife about a secret healing diet from cabbage crushed with rabbit pellets, to a healing shaman who can sweat the cancer out of her body, I'd be richer than one of our bombastic presidential candidates.

 

SharonH56

david54 said:

Hi Sharon. There should be a

Hi Sharon. There should be a patch that can give better relief. But more than that, I hear your frustration and fear. I understand what you mean when others give platitudes, albeit we'll intentioned. If I had a dollar for every person that has told my wife about a secret healing diet from cabbage crushed with rabbit pellets, to a healing shaman who can sweat the cancer out of her body, I'd be richer than one of our bombastic presidential candidates.

 

David, exactly right! I hear

David, exactly right! I hear "have you tried drinking...." everything from turmeric to peppermint tea to chewing raw ginger. What don't they understand about the fact that I can't even get him to drink WATER at times, let alone chew raw ginger! Or that anything they could suggest, I've already thought of.

I get it, they mean well. But I'd rather they stop giving suggestions. Sometimes "I'm sorry your'e going through this. If there's anything I can do to help, let me know" would be much more acceptable and appropriate.

Hussy

Sharon -- given how much more

Sharon -- given how much more hands-on and better informed you are about your husband's illness, I can appreciate how irritating it must be when others offer unwanted and unhelpful advice. 

Please keep us posted as you can. 

SharonH56

Hussy said:

Sharon -- given how much more

Sharon -- given how much more hands-on and better informed you are about your husband's illness, I can appreciate how irritating it must be when others offer unwanted and unhelpful advice. 

Please keep us posted as you can. 

The oncologist gave him a

The oncologist gave him a prescription for the scopalamine patch. Hopefully that will quell the nausea so he can eat and drink. He has an eye exam scheduled for tomorrow and a CAT scan next Wednesday, and then sometime after that he'll start the new meds. Trying to hang in there. Thanks everyone.

Noellesmom

SharonH56 said:

The oncologist gave him a

The oncologist gave him a prescription for the scopalamine patch. Hopefully that will quell the nausea so he can eat and drink. He has an eye exam scheduled for tomorrow and a CAT scan next Wednesday, and then sometime after that he'll start the new meds. Trying to hang in there. Thanks everyone.

Scop patch

Will probably make him too sleepy at first to see much of an increase in eating but you will.

Try to get an Ensure or Boost in his diet at least once a day.  If his appetite gets too low, there is a medication called Megestrol that will stimulate his desire to eat.

Hydration does not happen without salt so Gatorade is also a good idea.  Failing that, shaking some salt in his hand and eating it will work.

It's little things all the time, I know.

SharonH56

Noellesmom said:

Scop patch

Will probably make him too sleepy at first to see much of an increase in eating but you will.

Try to get an Ensure or Boost in his diet at least once a day.  If his appetite gets too low, there is a medication called Megestrol that will stimulate his desire to eat.

Hydration does not happen without salt so Gatorade is also a good idea.  Failing that, shaking some salt in his hand and eating it will work.

It's little things all the time, I know.

The scopalamine patch had

The scopalamine patch had mixed results. While it's helped with the nausea, he had some other side effects and had to stop using the patch. The good news is that he's started to eat again, albeit small amounts, and the gatorade does seem to help quite a  bit. He doesn't like the taste of it, but too bad, he needs it.

The latest aggravation is hearing that he might not be eligible for the new clinical trial they wanted to start him on because of some t waves or something like that on his EKG. So tomorrow they're going to redo his EKG and then we'll talk to the oncologist and see what's what. In the meanwhile our daughter, who lives in Massachusetts (we're in NJ), is in the hospital because of severe vomiting. She had the flu and then the stomach flu, and can't seem to shake it. We can't even go be with her because our plates are beyond filled as it is. It's always something!

Anyway, never wanted to be one of those people who complained all the time but you know what...we've EARNED the right to complain! 

Noellesmom

Breathing

Breathe in, breathe out.  Try not to hold your breath, Sharon.  I know it is hard not to do.

Hoping the EKG looks better and your daughter asks for a Big Mac tomorrow.  Have had the cyclical vomiting once myself while pregnant.  Rough stuff.

Hugs!