Checking in after a long while/just need to vent

coolvdub
coolvdub Member Posts: 408 Member
edited March 2014 in Colorectal Cancer #1
Hi everybody,
It has been several months since I have posted.I have been lurking but silent. Any how, after finishing Chemo I had been complaining to Docs about lower abdominal pain. We did a CT and PET scan to check things out. Turns out I had a fluid buildup and possible recurrance of CA. My Oncologist said get to ER ASAP, I went a couple of days later as I was feeling pretty good. The surgical Oncologist reviewed my scans and said fluid buildup was not worth draining.

That was in early February, right before my last Chemo treatment. Anyhow I was going to work as much as possible and then heavily medicating when I got home so I could rest and continue to work. I got to the point I couldn't eat much except for cottage cheese,gatorade and my Glucerna shakes. Occasionaly I could eat a very small dinner. Needless to say I was dropping weight, which is never a good thing when you are sick.

Fast forward to the beginning of May. I was at home for a week when I finally listened to Sheri my wife and went to urgent care.I ended up being loaded up in an ambulance and taken to the local ER. What a nightmare, arrived at 11:30 p.m. on Weds night and sat in ER until 5:30 p.m. Thurs night. Was finally brought upstairs to a room and then immediatly off for surgery to remove the absess that the CT scan the hospital did showed. So far so good, or so I thought. I had to wait to start eating, but once I did I got 2 meals in before we discovered I also had a fistula in my lower Colon. We discovered this when the surgeon came to check on me and the surgical site which was left open and filled with packing and covered with gauze. When the Doc pulled the gauze open,fecal matter poured out of the open wound, not good. So now I had to have another surgery,four days later to do an ileostomy.

So now I have a colostomy bag on my right side abdomen.I am happy to still be alive and have come to terms with the colostomy, if it winds up being permanent I can deal with it. But it should only be a temporary thing to give my Colon time to heal so we don't have to do surgery to repair the fistula. Wow, this was long and if you read this far thanks for listening.

Don

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #3
    Now We Know
    What's happenin', Don?

    Good to see you! Wondering where you been - and now we know.

    Sorry to hear about your misfortune, but glad to see you still here and going. Sounds like you've got a good plan for resting and healing. Here's talking with you in the future - don't be a stranger:)

    -Craig
  • angelsbaby
    angelsbaby Member Posts: 1,165 Member
    #4
    Sundanceh said:

    Now We Know
    What's happenin', Don?

    Good to see you! Wondering where you been - and now we know.

    Sorry to hear about your misfortune, but glad to see you still here and going. Sounds like you've got a good plan for resting and healing. Here's talking with you in the future - don't be a stranger:)

    -Craig

    I hope
    you feel better soon.

    michelle
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #5
    Surgery
    So sorry that you have had to have the operations, but it was good they found what they did. Having an ileostomy isn't as bad as what we first fear. Of course, it is not the ideal situation but you are alive because of it. Hope that you get to feeling better soon.

    Kim
  • Shayenne
    Shayenne Member Posts: 2,342
    #6
    Annabelle41415 said:

    Surgery
    So sorry that you have had to have the operations, but it was good they found what they did. Having an ileostomy isn't as bad as what we first fear. Of course, it is not the ideal situation but you are alive because of it. Hope that you get to feeling better soon.

    Kim

    Wow...
    ...You must have been reading my mind because I was just thinking of you Don.

    Sorry to hear about the colostomy, but it's ok, I have one as well, and I came to terms with it a long time ago as well. It's really not too bad, you get used to it. I actually got so used to it that I'm terrified of getting a reversal lol...

    It's still good to hear from you Don, and hope you feel better soon! You need to eat more though! ;)

    Hugsss!
    ~Donna
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #7
    Hi Don,
    I am glad to see
    Hi Don,

    I am glad to see your post but sorry you have been through all this. I hope you are feeling better soon.
  • coolvdub
    coolvdub Member Posts: 408 Member
    #8
    AnneCan said:

    Hi Don,
    I am glad to see
    Hi Don,

    I am glad to see your post but sorry you have been through all this. I hope you are feeling better soon.

    Thanks for all the kind
    Thanks for all the kind words. It is nice to know you are remembered. I'm sorry for not staying in touch. It's just that it took eveything out of me to be able to work and then I would just come home and basically,medicate,eat and crash for the evening. Everyday it was a battle just to get ready for and then drive an hour to get to work. On one day I actually had to take a nap in the parking lot at work so I could make the drive home. Not complaining, just explaining my situation.Also since finishing Chemo, the neuropathy has grown worse in my hands and feet making the simplest of things a bit more challenging.

    Don
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #9
    Don
    Hi Don,

    Wow- you've had a rough time, haven't you?! But, you're still here and that's what's important! Take it easy and allow your body to heal well. Give it time- hopefully as you heal, you'll start gaining energy and won't feel so sleepy all the time. Give yourself some energy boosters- wheat grass juice, gogi berry or acai berry juice- something like that. I know acai juice and lots of wheat grass juice really helped me after my surgery. I almost felt I had a surge of energy about a month after taking it. I actually was drinking Mona Vie, which is quite expensive, but it really, really made me feel great. I have a friend who used to be a Mona Vie dealer then & she gave me a couple of cases for free. I wouldn't have bought it myself since it's pricey (about $30-40 a bottle), but I honestly haven't found anything since then that worked for me as well. Costco sells something similar that is less, without the name, I believe.

    Take care!!
    Lisa
  • coolvdub
    coolvdub Member Posts: 408 Member
    #10
    lisa42 said:

    Don
    Hi Don,

    Wow- you've had a rough time, haven't you?! But, you're still here and that's what's important! Take it easy and allow your body to heal well. Give it time- hopefully as you heal, you'll start gaining energy and won't feel so sleepy all the time. Give yourself some energy boosters- wheat grass juice, gogi berry or acai berry juice- something like that. I know acai juice and lots of wheat grass juice really helped me after my surgery. I almost felt I had a surge of energy about a month after taking it. I actually was drinking Mona Vie, which is quite expensive, but it really, really made me feel great. I have a friend who used to be a Mona Vie dealer then & she gave me a couple of cases for free. I wouldn't have bought it myself since it's pricey (about $30-40 a bottle), but I honestly haven't found anything since then that worked for me as well. Costco sells something similar that is less, without the name, I believe.

    Take care!!
    Lisa

    Hi Lisa,
    I will check into
    Hi Lisa,

    I will check into the things you have mentioned. I have a friend whose Mom sells the Mona Vie, and your correct about it being spendy. Unfortunately since I have had the complications that I did there is no money coming in right now. I used up all my leave at work and am on leave without pay.

    I haven't worked since May 7th and because I have Kaiser for health insurance and we don't have a Kaiser hospital where I live.I had to go to a contract hospital that accepts Kaiser patients. Being as my surgery was an emergency situation a non Kaiser Doc did it. That put me in disability hell, surgeon wouldn't fill out disability medical portion since he wasn't a Kaiser Doc and Kaiser Docs wouldn't fill it out since they didn't do the surgery and were not totally familiar with what was going on. I finally got my Onc to give me a Docs note so the insurance department at Kaiser would complete the paperwork and submit it. I hear they always deny it the first pass through, I hope not. I can't even make my house payment right now and need to keep the few $$$ I have for co-pays and gas to get there, round trip it's 94 miles for me since I live in a small town.

    At least my credit union seems to be sympathetic, we have filed papers with them to do a two month deferal on my mortgage. Crossing my fingers that it goes through and I get some disability money coming in. Luckily I'm a Federal employee and they will continue to pay my portion of health insurance for up to a year. At least I don't have to worry about losing my insurance in the near future.

    Don
  • Aud
    Aud Member Posts: 479 Member
    #11
    coolvdub said:

    Hi Lisa,
    I will check into
    Hi Lisa,

    I will check into the things you have mentioned. I have a friend whose Mom sells the Mona Vie, and your correct about it being spendy. Unfortunately since I have had the complications that I did there is no money coming in right now. I used up all my leave at work and am on leave without pay.

    I haven't worked since May 7th and because I have Kaiser for health insurance and we don't have a Kaiser hospital where I live.I had to go to a contract hospital that accepts Kaiser patients. Being as my surgery was an emergency situation a non Kaiser Doc did it. That put me in disability hell, surgeon wouldn't fill out disability medical portion since he wasn't a Kaiser Doc and Kaiser Docs wouldn't fill it out since they didn't do the surgery and were not totally familiar with what was going on. I finally got my Onc to give me a Docs note so the insurance department at Kaiser would complete the paperwork and submit it. I hear they always deny it the first pass through, I hope not. I can't even make my house payment right now and need to keep the few $$$ I have for co-pays and gas to get there, round trip it's 94 miles for me since I live in a small town.

    At least my credit union seems to be sympathetic, we have filed papers with them to do a two month deferal on my mortgage. Crossing my fingers that it goes through and I get some disability money coming in. Luckily I'm a Federal employee and they will continue to pay my portion of health insurance for up to a year. At least I don't have to worry about losing my insurance in the near future.

    Don

    Hi, Don
    I don't believe we met. Sometimes I'm here (lurking or otherwise), sometimes not. Glad to meet you.
    Sorry you're going through the financial woes that cancer seems to put us through.
    Holding you in the Light for continued healing and peace and for some (financial) relief.
    ~Aud
  • coolvdub
    coolvdub Member Posts: 408 Member
    #12
    Aud said:

    Hi, Don
    I don't believe we met. Sometimes I'm here (lurking or otherwise), sometimes not. Glad to meet you.
    Sorry you're going through the financial woes that cancer seems to put us through.
    Holding you in the Light for continued healing and peace and for some (financial) relief.
    ~Aud

    Hi Aud
    No we haven't met, until now that is. I was active from probably May of 2009 until feb of 2010 when I started having a lot of problems. At that time I just felt really bad and was unable to do much besides sleep and work. I did however get good news from my credit union. They have deferred my mortgage payment for 2 months, so I now have some much needed breathing room financialy speaking. Now if I can get some disability money coming in things will be even better. So all is going better and is continuing to improve. And it has been a pleasure to meet you, and thank you for your kind words of encouragement.

    Don
  • PamPam2
    PamPam2 Member Posts: 370 Member
    #13
    coolvdub said:

    Hi Aud
    No we haven't met, until now that is. I was active from probably May of 2009 until feb of 2010 when I started having a lot of problems. At that time I just felt really bad and was unable to do much besides sleep and work. I did however get good news from my credit union. They have deferred my mortgage payment for 2 months, so I now have some much needed breathing room financialy speaking. Now if I can get some disability money coming in things will be even better. So all is going better and is continuing to improve. And it has been a pleasure to meet you, and thank you for your kind words of encouragement.

    Don

    gas money
    Hi Don
    You might want to check with the american cancer society patient navigator. They can help with transportation costs for medical. In out little town there is a small public bus system, and the acs or human services will pay them to take me when I go to Columbus to the university hospital. I believe they will also help with gas money if you have to use own vehicle. You can also check with your department of human services, you should be able to get some emergency food assistance until your disability comes through. I also went on a plan for my home phone, called life line with the phone company, with no long distance my phone bill is a flat $10.57 a month, every little bit helps when you need it! Hope you heal up well and things get better for you soon.
    Pam
  • coolvdub
    coolvdub Member Posts: 408 Member
    #14
    PamPam2 said:

    gas money
    Hi Don
    You might want to check with the american cancer society patient navigator. They can help with transportation costs for medical. In out little town there is a small public bus system, and the acs or human services will pay them to take me when I go to Columbus to the university hospital. I believe they will also help with gas money if you have to use own vehicle. You can also check with your department of human services, you should be able to get some emergency food assistance until your disability comes through. I also went on a plan for my home phone, called life line with the phone company, with no long distance my phone bill is a flat $10.57 a month, every little bit helps when you need it! Hope you heal up well and things get better for you soon.
    Pam

    Hi Pam,
    I filled out the
    Hi Pam,

    I filled out the paperwork from ACS for travel re-imbursement for gas. Unfortunately they never sent anything, which was okay at that point. Fortunately we have a chest freezer and usually keep it pretty well stocked, so we are doing okay for now, just have to pick up a few odds and ends now. As far as the phone goes, I called the phone company and we did some bundling as they put it and saved about $40 a month. Thanks for all the suggestions, fortunately we were in a get out of debt mode before all this happened and we live pretty conservatively. I know this is only a temporary thing and there are people out there who are far less fortunate than I and Sheri are.

    Don
  • luv3jay
    luv3jay Member Posts: 533 Member
    #15
    Well you didn't say anything
    Well you didn't say anything about the cancer recurring so I will take that as an excellent sign. I'm sorry you've gone thru so much and having to have the colostomy bag, but again...no cancer so I'm very happy for you. I hope you continue to improve.

    -Sheri
  • coolvdub
    coolvdub Member Posts: 408 Member
    #16
    luv3jay said:

    Well you didn't say anything
    Well you didn't say anything about the cancer recurring so I will take that as an excellent sign. I'm sorry you've gone thru so much and having to have the colostomy bag, but again...no cancer so I'm very happy for you. I hope you continue to improve.

    -Sheri

    Hi Sheri,
    So far I am CA
    Hi Sheri,

    So far I am CA free, from reading what you are going through. I think you have had it a lot tougher than I have. Good luck to you and stay positive. BTW I like your name, my wifes name is also Sheri, well legally Cheryl, but she goes by Sheri.

    Don

Discussion Boards