Confusing Day

Two appointments today and the roads were crappy!

Dan had to get a blood draw today. Proteins are high again so there is one thing he cannot get tomorrow with his chemo.  Dr. Khan mentioned having Dan see a kidney doctor because of this but the bloodwork for the kidneys were fine.  But then he said he thought it was because of the medication that they had him stop at the hospital weeks ago and Dan will need to take again.  SO CONFUSING.

Weight 190. He lost a few pounds from two weeks ago which isn't bad but our scale had him lower because he didn't have shoes and clothes on.  His blood pressure wasn't bad at 134/69.  That's good.  And all of the other bloodwork was good.

We asked Dr. Khan some questions.  After the appointment we are to go see the cardi-oncologist for the heart ultrasound.  See what she had to say before seeing if Dan was to get chemo tomorrow.  I didn't know this but Dan was receiving 3 chemo's every two weeks not 2 chemo's.  It was the 5FU (3rd) chemo causing the issues, the one that is sent home with him.  We asked about taking the pills instead as at least he wouldn't be receiving the 5FU all at once in two days.  Dan would have taken 2 pills a day for two weeks but Dr. Khan said it would do the same thing to his heart.  So maybe the alternative would be to get his first 2 chemo's every week if he can't take the 5FU and then a third chemo with the first two twice per month.  But he previously told us that the 5FU is the most active. SO CONFUSING.

Then we asked should Dan not receive chemo at all, what would be the life expectancy.  You can never pinpoint and offer a definitive answer to this type of question.  His response, however, was six months or less. So of course, onward we go.  But Dan and I have discussed the fact that if he gets to a point where it may not be worth it to continue chemo treatments due to very bad side effects, he may not continue.  That is why we asked Dr. Khan that question.

Dan also asked about other treatment alternatives he learned about from other sources but none of them would work in his case.

Then we go see the cardi-oncologist who we were told all this time that an ultrasound would be done only to find that she did an EKG which ended up fine.  Come to find out, we were only going to see her for that and for her to modify his medications to avoid the heart episodes he experiences after treatment of 5FU which has helped other patients. And Dan overheard her talking to Dr. Khan on the phone and the cardi-oncologist told Dr. Khan that Dan shouldn't get chemo tomorrow so that the meds can take time to get into his system but then that changed again...maybe he can.  And she told Dan that he should continue with 5FU because that is the chemo he needs for his condition.  And I know Dr. Khan had said that before but today he didn't seem concerned. SO CONFUSING.

Then we had to go to Walgreens and wait for his prescriptions.  He has to take two meds 3-4 hours before chemo, meds 1 hour after and meds 24 hours after while stop taking other meds altogether.  SO CONFUSING.

We finally get home and an hour later Dr. Khan called to reiterate the meds Dan has to take that the cardi-oncologist prescribed and to see if we picked them up.  He said Dan can continue the chemo tomorrow but it would be every week...receiving 2 chemo's and only a boost of the 5FU (none sent home for the 46 hour drip).  I didn't know this but they always gave Dan a boost of the 5FU and then sent him home with the ball of that stuff for the drip.)  It was up to Dan if he wanted to do that or wait until next week so that his body had a chance to get used to the cocktail of drugs and prepared for treatment.  Dr. Khan didn't have an issue waiting a week.  Dan said he'd rather do that.  Now we have to wait for his February schedule but he will continue to receive chemo on Thursdays.  And I will leave work early on those days and take Fridays off to be sure he is doing okay with this new treatment plan.  I was doing this anyway due to the recent scares with the side effects.  I'll just continue doing this for now.

So....Dan will begin treatment again next week instead of this week.  Two chemo's and a boost of the 5FU and do that for a month to see how he does.  If no more episodes, then Dan will receive all 3 chemo's again.  That is his best chance of prolonging his life some.

Dan and I felt like this was a very confusing day.  Just when you think you have the game down, the rules change and can change multiple times in a day!  Our heads are spinning.  Dan seems to have it all worked out just fine in his mind while I'm still processing.....!

I worry that the "one hand" isn't talking to the "other" in the medical community.  I feel we get mixed messages sometimes which makes it difficult to stay on top of things.

In the meantime, Dan says Hi to everyone and thanks you for your comments, cards, calls and texts.  I read all comments to Dan from these posts to make sure he receives all of your heartfelt messages! 💓

This picture was from last Saturday....