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What a week

Freida
Posts: 191
Joined: Nov 2011

Monday we went to a different hospital (MDA has a 4 week wait to get an EUS done)for what we thought was going to be just a preop visit before the EUS and ended up being whisked off to the ER as the EKG indicated a heart attack. Spent 8 hours in the ER before being admitted. Spent 2 nights there. The cardiologist says Bill has definitely had a heart attack (silent as he was unaware of it and had no symptoms) at some time but that it did not seem to have just happened. Recommended an angiogram to check for blockages. That was clear so they don't know why he had a heart attack. Also had the EUS and was finally staged is a T3N1Mx. Missed the wednesday appt we were supposed to have with the oncologist at MDA and rescheduled for friday.

Today (thursday) we thought we had a hospital free day. Then my cell phone rang at 9.30a.m. and it was the oncologist calling to say that the CT scan from last week showed a small blood clot in the lungs and he wanted to see Bill today to get him started on blood thinners. Went in and while we were waiting for the doctor my phone rang again and it was the pharmacy calling to say they were filling our prescription for blood thinners (a different one to coumadin as this clot appeared while he was on coumadin) and wanted to make sure we knew our co pay was $2150 for a month supply (Bill is retired and on medicare D and was in the dreaded donut hole - out of it now!). About had a stroke. Met the doc and had a good meeting with him. Still does not recommend surgery because of the other health risks but will go with a 2 month chemo followed by 6 week chemo/radiation combo. Decided to start chemo tomorrow and they went over the chemo drugs and protocol (every 2 weeks = 3 different chemo drugs - 2 infused at the hospital over 5-6 hours, the third through a pump he will wear for 48 hours, then after 2 months he will be restaged and the next step will begin - 5 days a week radiation and also more chemo). Were relieved that we were finally starting.

Then went to get the PICC line checked as I thought there was some redness and wanted to make sure everything was ok. The nurse took off the dressing and discovered he has a rash under the dressing and is allergic to it. So now we have to use a different dressing (and will have to get new supplies of sterile packs as we can't use the ones we have - can't switch them out of course). Then she commented his arm looked swollen - compared it to the other arm and took measurements and sure enough it was way bigger than the other. A senior nurse came in to look and we realized his whole arm and his hand were swollen. She asked how long it had been like that. We honestly had not noticed - so much has happened this week we are just running on fumes. They called the oncologist and he wanted them to put a new line in the other arm but they refused until a venous flow test is done to check the blood flow. it was already late afternoon so that is tomorrow. The best case scenario seems to be that the current PICC line will have to come out and a new one will be put in the other arm. And hopefully in time for the first chemo to start tomorrow.

It just seems to be one thing after another. I think the PICC line business was the last straw for my poor Bill - it's the first time I've seen him really break down in tears since all this started. He is feeling really discouraged and said perhaps it's just not meant to work out (very very unlike him). He seems better this evening. Went out for a nice steak dinner with the friend we have been staying with (what a blessing she has been). So off to bed and up at 5.30. Really hope things start to look up a bit soon. This week has just been unbelievable.

Sorry this is so long - I just need to unload.

ritawaite13's picture
ritawaite13
Posts: 249
Joined: Aug 2011

Go ahead and unload, that's what we're here for! You really have had a boatload of bad stuff happen this week. No wonder you and Bill are feeling overwhelmed! My husband also had problems with blood clots when he was first diagnosed with EC. One of those nasty things made it to his brain and caused a stroke. This is something you definately don't want to happen. After his stroke, and while he was on blood thinners, he was still producing more clots so they implanted a filter that would break up any larger clots that could have caused another stroke. This seemed to do the trick because he didn't have any more large clots or strokes.
Take care and unload whenever you want to here!
Hugs
Rita

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Good Lord Freida:

You have indeed had a week. Wish we were there to give a real hug instead of virtual hug. I can't beleive you had enough wits about you to write this so completely. I am impressed!

If it is the PICC line, maybe it is good that the nurse was really paying attention to detail and noticed this before Bill started chemo. After you guys are all done with this EC treatment, you will deserve a wonderful vacation.

A $2150 co-pay for a blood thinner - that is so ridiculous - I can't even imagine that these companies can in a good conscious even think about charging that kind of money. Something is very wrong and I wish I knew a solution to it.

Best of luck to you and Bill today and next week. Remember, you can call me 24/7 - I'm always here for you. Please give Bill a hug for me. Maybe this is going to be like "in like a lion, out like a lamb' for you guys - we can hope - right?

Thinking of you every day, all day,
Judy

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

You poor dear! It's like you want to say, "Enough already!" It's interesting that we take hit after hit and we keep on going. We just deal with everything and go forward.

This is the perfect place to vent and yell and scream. Then you'll just pick yourself up and go full speed until the next speed bump.

Big big hugs to you!

(I hate the prices of meds!)

Freida
Posts: 191
Joined: Nov 2011

Thank you all for the support. Much better day today. The venous flow test was fine and they said it was fine to go ahead and start chemo. They are not sure why the swelling in the arm (which is a little reduced today). We have to just keep an eye on it. Had to change to yet another different type of dressing (first type he was allergic to, 2nd type was not sticking well). Started chemo. He is so relieved to get started at last. Had the infusion at the hospital and now has the pump. This first time we have to stay in Houston for the 28 hours of the pump. Next time they say we can go home with the pump and disconnect it ourselves.

So far he feels fine. Even went to the grocery store and walked around. Kind of like waiting for the other shoe to drop. We are both feeling so much better than yesterday.

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Good deal! Like to hear that things are turning around for you guys. I am sure he is relieved and you too.

Keep us posted on how things are going for you two. Keep up the good work Bill and give 'em h-e-double hockey sticks!

Hugs,
Judy

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Good deal! Like to hear that things are turning around for you guys. I am sure he is relieved and you too.

Keep us posted on how things are going for you two. Keep up the good work Bill and give 'em h-e-double hockey sticks!

Hugs,
Judy

Freida
Posts: 191
Joined: Nov 2011

should say 48 hours on the pump, not 28.

The first hour of the chemo was a bunch of pretreatment meds - benadryl for possible allergic reactions (made him twitchy - must be where our daughter gets it from - while benadryl made most kids drowsy it made her hyper), an anti nausea, steroids - several other things.

Bill was back to his usual self today. 2 minutes into the chemo "has my hair fallen out yet?"

AngieD's picture
AngieD
Posts: 504
Joined: Sep 2011

So glad things are improving, Freida! And so glad to see Bill has gotten his humor back. Hope you both can coast for awhile!
Angie

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