It is nice to be home again

thxmiker
thxmiker Member Posts: 1,278 Member
in Colorectal Cancer #1

 

I have had a difficult month. The side effects of Chemo (Folfiri w/Avastin), nausea, and not being able to consume calories. (I was able to ingest some calories, just not enough to keep me fueled up.) My colon shut down again. That was the third time in a month! I had Laurie drive me to the local Cancer Center, it is a research and teaching hospital 100 miles south of us. 

 

When we arrived at the hospital, the E.R. was over run with people. It was like a Black Friday sale at the E.R.. I was weak, hurting, and depleted. I needed help to fight my dragon. I finally get checked in. We have been sitting in the E.R. waiting room for nearly 3 hours. We get Nurse Grumpy Pants to help triage me. She asks me a question, then interrupts me while I am answering the question. I finally ask her if I was going to be able to tell her why I am there. Laurie had called our Oncologist to forward my medical records to the hospital.

 

We are now in the E.R. And I must endure a battery of tests. This of course is also used to bilk the insurance company for as much as possible. We had arrived at 3:15 p and now it is 10:30p and I am getting wheeled up to a room. I am sedated and am able to relax a little.

 

A couple of days and many tests later. A doctor tells me there is nothing wrong. I understand that hanging out in a hospital room for some is fun, but not for me. Immediately after the Doc leaves, I do my best Linda Blair impression. That got their attention, it is hard to fake that.

 

More tests and still no definitive answer. The various docs tell us that sometimes these things just work themselves out. I explain that is all good to know, but how do we avoid this in the future? We need an answer, not you get to live by the seat of your pants.

 

A few more days in the hospital, no real solution, and the Docs ask if I want to go home. Laurie drives us the 100 miles home. Our dogs are excited to see us, and we are excited to see them.

 

We have an appointment with a Gastro Entrologist in 10 days. Hopefully we will get a more definitive answer. Else, I am plugging along eating a little here and there, hoping to get enough calories.

 

 

On the positive: My tumors are shrinking! My CEA is rising slowly (8.4), but it had risen every time I have done Chemo and lowers when the chemo ends. 

Best Always,  mike

Comments

  • Semira
    Semira Member Posts: 381 Member
    #2
    Oh Mike,

    What a story. Glad you are home know but wished they found some problem and were able to fix it instead of this nasty hospital stay. I have no advice in getting in more calories but I bet others will. So I just can send some greetings and hugs from Germany.

    And hey, the Chemo works and the tumors are shrinking, at least THAT is good news.

    Go on!

    Petra

  • lp1964
    lp1964 Member Posts: 1,239 Member
    #3
    Hey Mike,

    Sorry for the bad days you had. You ave always been good at the nutritional side of things. It just takes a little while to figure out what works and what doesnt.

    I remember during my chemo i was sitting on the couch and obscessivly thinking which food could take this aweful taste in my mouth away, but everything I could

    think of made me wanna throw up. For me it was ginger in all kinds of ways that gave me some appetite. You just have to experiment what works for you.

    I hope your bowels start behaving and do what they supposed to.

    All the best,

    Laz

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #4
    Cyber hugs

    I am sorry to hear your woes, Mike.  You are such a knowlegable, determind person who has given inspiration to so many, I just wish your reward could be NED. 

    How frustrating to get such little medical service from the hospital. Sounds allot like the experience I had when I was first diagnosed. I was just brushed off as an old women with constipation. 

    I pray that you will be able to get the nurtition you need to keep your body strong. Malnutrition is a big issue with us Cancer patients, and I know you are very aware of that. 

    I am glad you are not worrying about your CEA; as it is not a good indicator during treatment. My Oncologist would not test my CEA when I was going through it. 

    You are in my thoughts and prayers.

    Sue - Trubirt

     

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #5
    I was thinking about you last

    I was thinking about you last night. I am glad you are home and eating some.

  • Easyflip
    Easyflip Member Posts: 588 Member
    #6
    Well that

    sounds miserable. Have you tried marijuana? It's an appetite stimulant and an anti nausea drug- two for one!

    easyflip/Richard 

  • Yolllmbs
    Yolllmbs Member Posts: 360 Member
    #7
    Mike,

    I'm sending strength, prayers and love to you and your wife.  Even in sarh hours, your words help others dealing with the same things. Im praying you have answers and resolutions soon. 

     

    Yolanda

  • Cathleen Mary
    Cathleen Mary Member Posts: 827 Member
    #8
    Yolllmbs said:

    Mike,

    I'm sending strength, prayers and love to you and your wife.  Even in sarh hours, your words help others dealing with the same things. Im praying you have answers and resolutions soon. 

     

    Yolanda

    Mike , what an ordeal!  So

    Mike , what an ordeal!  So sorry. As amazing as what medicine knows, it is equally amazing at what they don't know.  I hope the gastroenterologist can be more helpful.

    You must be exhausted. Praying for comfort and a plan for relief soon.

    CM

  • maglets
    maglets Member Posts: 2,576 Member
    #9
    Cathleen Mary said:

    Mike , what an ordeal!  So

    Mike , what an ordeal!  So sorry. As amazing as what medicine knows, it is equally amazing at what they don't know.  I hope the gastroenterologist can be more helpful.

    You must be exhausted. Praying for comfort and a plan for relief soon.

    CM

    Mike

    ah Mike that all sounds just rotten.....you made me smile though with your tale of Grumpy nurse......not like we are applying for a big Spa Vacation as we sit in those darned Emergency Rooms in pain and distress. Glad you are home.....sorry for the long drive....bet you are worn out.  Hoping the "gastro" will be able to help.

    all the very best, mags

  • thxmiker
    thxmiker Member Posts: 1,278 Member
    #10
    Thanks!

    Thank You all for your support!   The forum has always been a great support network, and lots of information.



    I have 10 more days until I see the GI Doc. Hopefully we will get some answers for me.



    I try to make light of my situation and find humor in life. Else, I would be depressed. No matter what, I am going to find enjoyment in my life. We gave a bunch of Splat Balls to the nurses. Splat Balls are these malleable sticky balls that you throw against a wall and they stick and then slide down the wall. They have silly faces on them, and are about $1 at big box stores. We were sitting in our room and we heard thud and then nurses laughing outside our room. They were throwing them against various walls after hours. One of my joys in life is to see people laugh and be happy. I used to give silly toys to my clients at the end of a job to thank them for their business. A few would look at me with that expression, “Are You for real?” The next time we would meet, the toy would be on their desk and they would tell me how they use the toy for stress relieve. I have given my share of Squish Balls, Splat Balls, and Flying Chickens to clients.  Several Clients would ask where to get a bunch of the toys.  

     

     

    Best Always,  mike

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