Whew!

Pennymac02
Pennymac02 Member Posts: 332 Member
edited March 2014 in Caregivers #1
What a day! Yesterday we drove the two hours to the hospital and Mike got all of the tests, this morning they started him on the meds, gave him some packed platelets, and his second embolization. This one affected him much worse than the first one, he's more sore,more nauseous, and more loopy from the meds. He also was WAY more cranky when they made him lay flat on his back for 5 hours instead of the ususual 2. He actually had a temper tantrum in the middle of the 5 bed oncology ward of the VA. Not pretty.

Zinniemay, I remembered what you said and yelled at him because he is my husband, then told him I was leaving to take myself to Cracker Barrel for dinner, and he could get SOMEONE ELSE to fetch and carry for him! Well, he backed up pretty darn quick. I'm still a little frustrated, though, I just let myself get too tired and over involved today. Hopefully they will discharge him in the morning.

The best news of all? The test results and medical info all got fedex'd to the Washington DC VA transplant board today. Hopefully we'll get accepted and get placement on "the list" before Christmas!

Comments

  • zinniemay
    zinniemay Member Posts: 522
    #2
    Take charge
    You go girl! I know it is the hardest thing in the world to yell back when you know they are sick. but our lives are and have to be some what normal. I am trying to remember who we are and why we do what we do. So we have times that we can laugh at and times we can cry.
    I know Sometimes we have to "yell" to get the point across then so be it. You can not love one some and handle them with kid gloves all the time. I know I would get sick of kisssie kissie all the time. Lets get real we are all bits and pieces of who we were. Super glue will not fix us. But a little by little our lives can be the way it was.
    I think he may even felt a little normal today!! I am hoping they accept and get him on that list too. That would be great and then we could yell for joy!!
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #3
    pats on the back
    Pats on the back and hugs all the way around, Penny.

    You did good. Keep it up.
  • Pennymac02
    Pennymac02 Member Posts: 332 Member
    #4
    Week 2
    Okay, so he's been recuperating fairly well this week, no more weird outbursts from the meds and he's been taking his lactulose as prescribed for his ammonia, so no craziness, either. I guess I'm just posting today because we're in the beginning of another hurry up and wait phase. Won't find out if the embolization was successful for another 4 weeks, no additional scans are scheduled for another 4 weeks, only one doctors appointment between now and then for a follow up colonoscopy. So how come I'm not appreciating the slowing down? Becuase I really hate the waiting on the test results thing, thats why! Too much down time with the thoughts going round and round in my head. I'm trying to keep as busy as possible, but this morning its really hard to do, for some reason.
    Penny
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #5
    Pennymac02 said:

    Week 2
    Okay, so he's been recuperating fairly well this week, no more weird outbursts from the meds and he's been taking his lactulose as prescribed for his ammonia, so no craziness, either. I guess I'm just posting today because we're in the beginning of another hurry up and wait phase. Won't find out if the embolization was successful for another 4 weeks, no additional scans are scheduled for another 4 weeks, only one doctors appointment between now and then for a follow up colonoscopy. So how come I'm not appreciating the slowing down? Becuase I really hate the waiting on the test results thing, thats why! Too much down time with the thoughts going round and round in my head. I'm trying to keep as busy as possible, but this morning its really hard to do, for some reason.
    Penny

    Sounds normal to me!
    When Jim's treatments were completed and before we had the PET scan, I felt like I was going crazy! All this adrenaline and nowhere to run to!

    Just try to take a breath and realize this may be the only "rest time" you will get. We never know when additional treatments, procedures, etc. may be needed.

    Have a great weekend!
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #6
    Pennymac02 said:

    Week 2
    Okay, so he's been recuperating fairly well this week, no more weird outbursts from the meds and he's been taking his lactulose as prescribed for his ammonia, so no craziness, either. I guess I'm just posting today because we're in the beginning of another hurry up and wait phase. Won't find out if the embolization was successful for another 4 weeks, no additional scans are scheduled for another 4 weeks, only one doctors appointment between now and then for a follow up colonoscopy. So how come I'm not appreciating the slowing down? Becuase I really hate the waiting on the test results thing, thats why! Too much down time with the thoughts going round and round in my head. I'm trying to keep as busy as possible, but this morning its really hard to do, for some reason.
    Penny

    Waiting
    I always felt like I was waiting for the other shoe to drop during those down times. We are so busy when there is treatment and testing that we do what needs to be done. We feel like we are accomplishing something. The wait time just seems to drag. We did try to do stuff during that time even if it was just getting out of the house for a trip to a park. We even put together a trip to Hawaii in about a week once. We had a great time even though Doug had to take several naps. I took a couple of books and read a lot. A good mystery helped me take my mind off everything. So I guess what I am trying to say is that you sound very normal to me, whatever normal is. Fay
  • zinniemay
    zinniemay Member Posts: 522
    #7
    Pennymac02 said:

    Week 2
    Okay, so he's been recuperating fairly well this week, no more weird outbursts from the meds and he's been taking his lactulose as prescribed for his ammonia, so no craziness, either. I guess I'm just posting today because we're in the beginning of another hurry up and wait phase. Won't find out if the embolization was successful for another 4 weeks, no additional scans are scheduled for another 4 weeks, only one doctors appointment between now and then for a follow up colonoscopy. So how come I'm not appreciating the slowing down? Becuase I really hate the waiting on the test results thing, thats why! Too much down time with the thoughts going round and round in my head. I'm trying to keep as busy as possible, but this morning its really hard to do, for some reason.
    Penny

    another day
    Penny,
    We went yesterday for Chemo 130 miles there to find Greg's platelets are to low, everything else looked find. He had a ct scan but will not know about that till Monday or Tuesday/ So wait is on. The Chemo we have to go next week and hope he is ok for it. The Doctor seam to think so.
    It is hard to hurry up and wait. I know that for a fact. It is not something I do well. I think the waiting is the harder part it is when we have time to stop and say did that just happen? What was that? all these things now can rush into our brains good thoughs and bad ones. It is the idle time that lets all these things get us down.
    I am thinking maybe it is harder for some of us. Who are now staying at home all the time (89%) . Way to much time to just think. And if we are not thinking about all that has happened we think what might. Then we turn around and see things we were doing or going to do that needs to be done. Or that is how it seams to me.
    DEBBIE CAKE TIME!
  • Pennymac02
    Pennymac02 Member Posts: 332 Member
    #8
    zinniemay said:

    another day
    Penny,
    We went yesterday for Chemo 130 miles there to find Greg's platelets are to low, everything else looked find. He had a ct scan but will not know about that till Monday or Tuesday/ So wait is on. The Chemo we have to go next week and hope he is ok for it. The Doctor seam to think so.
    It is hard to hurry up and wait. I know that for a fact. It is not something I do well. I think the waiting is the harder part it is when we have time to stop and say did that just happen? What was that? all these things now can rush into our brains good thoughs and bad ones. It is the idle time that lets all these things get us down.
    I am thinking maybe it is harder for some of us. Who are now staying at home all the time (89%) . Way to much time to just think. And if we are not thinking about all that has happened we think what might. Then we turn around and see things we were doing or going to do that needs to be done. Or that is how it seams to me.
    DEBBIE CAKE TIME!

    Debbie cake time!
    Don't get me started, or give me a reason to start. Everything is fitting tight these days!LOL
  • kimmygarland
    kimmygarland Member Posts: 312
    #9
    Pennymac02 said:

    Debbie cake time!
    Don't get me started, or give me a reason to start. Everything is fitting tight these days!LOL

    Zinnie May - AGREE
    I agree about the staying at home and having too much time to think! I am glad to have work to come to (most days); however, I feel guilty leaving on some days, ya know?

    Bob is getting better, but now is having trouble with hydration. We are putting 7-8 bottles of water down the tube every day.... good heavens! Oh well, two steps forward, one step back - at least we are moving in the right direction. He goes for first swallow treatment today. Oh how I hope he will be able to swallow in the next few months.

    Visit with Onco doc last week was very successful - said no trace of cancer in surgery report in lymph nodes and all clean margins at tumor site removal. So he is not recommending anymore chemo. Says the 2009 chemo should have gotten any roaming cells and unless 3 month pet scan shows something - he is golden. Oh, please pray it is so. I am reluctant to even get the least bit optimistic.

    I bought my son some Little Debby oatmeal creme pies this weekend. He loves them, and that type doesn't tempt me - so I'm good! :)
  • zinniemay
    zinniemay Member Posts: 522
    #10
    kimmygarland said:

    Zinnie May - AGREE
    I agree about the staying at home and having too much time to think! I am glad to have work to come to (most days); however, I feel guilty leaving on some days, ya know?

    Bob is getting better, but now is having trouble with hydration. We are putting 7-8 bottles of water down the tube every day.... good heavens! Oh well, two steps forward, one step back - at least we are moving in the right direction. He goes for first swallow treatment today. Oh how I hope he will be able to swallow in the next few months.

    Visit with Onco doc last week was very successful - said no trace of cancer in surgery report in lymph nodes and all clean margins at tumor site removal. So he is not recommending anymore chemo. Says the 2009 chemo should have gotten any roaming cells and unless 3 month pet scan shows something - he is golden. Oh, please pray it is so. I am reluctant to even get the least bit optimistic.

    I bought my son some Little Debby oatmeal creme pies this weekend. He loves them, and that type doesn't tempt me - so I'm good! :)

    one day
    Kimmy , We seam to be walking this road together and yet alone. It is a nasty road with many holes in it. Sometimes we step in a puddle ! It is so very hard to stay at home I know this for a fact. I have all day to do the things I use to say I will do it Saturday or Sunday now it is always tomorrow and it is like less gets done each day.
    Slowly I watch my friends leave as I no longer have thinks in common to talk about. Or maybe I an just to angry and they can't figure out what to say. I would like to blame them but I know I would not want to be around someone who has nothing to say except stage 4 and on .It is a new lanuage skill I am learning Dx . t4n1mo, Larynx heck pretty sure most my friends would not know where the larynx is or what it is used for. They most likely would not care anyway . They are busy getting ready for the weekend to catch up on their other things~
    Mean while I am home with Debbie (Cakes) we are getting very friendly in fact I have met almost all of her line except the darn smores . We laugh we cry and slow I reach for her she is always close by.
    I think I am a downer today could be I am always that way? I want to think I still could tell a joke or laught!

    Oh Oatmeal cream , Brownie, what a sweet!
    I am so glad Bob is getting better and hope one day he and Greg can set and share a Debbie Cake . I wish you always the best.
  • Pennymac02
    Pennymac02 Member Posts: 332 Member
    #11
    kimmygarland said:

    Zinnie May - AGREE
    I agree about the staying at home and having too much time to think! I am glad to have work to come to (most days); however, I feel guilty leaving on some days, ya know?

    Bob is getting better, but now is having trouble with hydration. We are putting 7-8 bottles of water down the tube every day.... good heavens! Oh well, two steps forward, one step back - at least we are moving in the right direction. He goes for first swallow treatment today. Oh how I hope he will be able to swallow in the next few months.

    Visit with Onco doc last week was very successful - said no trace of cancer in surgery report in lymph nodes and all clean margins at tumor site removal. So he is not recommending anymore chemo. Says the 2009 chemo should have gotten any roaming cells and unless 3 month pet scan shows something - he is golden. Oh, please pray it is so. I am reluctant to even get the least bit optimistic.

    I bought my son some Little Debby oatmeal creme pies this weekend. He loves them, and that type doesn't tempt me - so I'm good! :)

    Good news Kimmy!
    So glad to hear that no additional chemo is neccessary!!I feel ya on the reluctance to be optimistic. Mikes primary tumor in the liver is showing a size increase after the first embolisation, according to the medical records we just pulled yesterday. The onc had originally said no change in size. Also, the radiologist mentioned enlarged lymph nodes in the latest CT. No mention of mets, but I wonder if thats what "enlarged lypmh nodes" means? If anyone wants to share info, the lymph nodes in question are the celiac axis and periaortic ones, I believe they are around the abdomen/liver area. I'm not in full panic mode or anything, but I woke up at 5:00am this morning and it was the first thing I thought about.

    I will continue to keep praying for you and Bob. It kind of shocks me how I take simple things for granted. The ability to swallow, for one. Let us know how the swallow treatment goes!
    Penny

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