BeckyTice's Journey:

Patient: Colorectal (Colon) Cancer

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: over 4 years ago, Female, Age: 66, KRAS mutation positive: Yes, BRAF mutation positive: Don't Know, Stage IV

  1. 1
    • BeckyTice
    • Experience with Colorectal (Colon) C...
    over 4 years ago
    BeckyTice's Avatar

    Money

    Oh No

    What will happen if I can't work? I pay all the bills.

    0 Comments
  2. 2
    • BeckyTice
    • Experience with Colorectal (Colon) C...
    over 4 years ago
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    Colon surgery (colectomy or hemicolectomy)

    Procedure or Surgery

    The prep is not all that great. I'm sure it's not as bad as it use to be but still, drinking that stuff is nauseating. Especially after Gastric Bypass. I'm definitely not hungry. I'm a little nauseous as a matter of fact. But with surgery tomorrow I don't want to take anything for the nausea. Oh well....

    Went as Expected: Agree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  3. 3
    • BeckyTice
    • Experience with Colorectal (Colon) C...
    over 4 years ago
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    Colon surgery (colectomy or hemicolectomy)

    Procedure or Surgery

    GW University Hospital is excellent. The is professional and caring. My doctors, especially the residents, Have been encouraging and advocats for me. Surgery was yesterday... tofay I walked all around the floor.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    1 Comment
  4. 4
    • BeckyTice
    • Experience with Colorectal (Colon) C...
    over 4 years ago
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    Hospitalization

    Other Care

    The hospital called to day to find out if I'm doing ok. Actually it was supposed to be a survey about the staff. I, of course, gave them all excellent ratings. But then.... I said I overdid it yesterday. The Head Nurse just called me back to apologize because the nurses should have warned me not to overdo. I told Donna [the head nurse] that they did tell me.... 3 times they told me.... but I didn't listen. So now hubby is going out to get me prune juice [which I remember now that they told me]. I gotta say it again. GWU is an excellent place to have surgery!

    0 Comments
  5. 5
    • BeckyTice
    • Experience with Colorectal (Colon) C...
    over 4 years ago
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    Choosing an oncologist

    Decision Point

    I just scored an appointment with this doctor. I hope I can handle the trip after chemo. http://www.gwdocs.com/cancer/james-d-ahlgren

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  6. 6
    • BeckyTice
    • Experience with Colorectal (Colon) C...
    over 4 years ago
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    Finished treatment

    Celebration

    [SIZE="6"]:yahoo::yahoo: NO CHEMO! :yahoo::yahoo:[/SIZE] I have a genetic issue. I have to go to testing every three months. My mom passed a gene to me. So chemo would do not good anyway. But Hey.... Right as of this minute I am cancer free and NO CHEMO! :yahoo: Thank you all for your prayers..... :coffee:

    0 Comments
  7. 7
    • BeckyTice
    • Experience with Colorectal (Colon) C...
    over 4 years ago
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    Doctors can't agree because of HNPCC

    Oh No

    MSI-H and HNPCC the debate continues. Now both the oncologists I'm seeing [one's local and one's a genius at GWU] are discussing the need for HNPCC testing. They are trying to figure out if I will survive better with or without 5 FU chemo.

    0 Comments
  8. 8
    • BeckyTice
    • Experience with Colorectal (Colon) C...
    over 4 years ago
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    Home care

    Other Care

    I am so lucky that my daughter is a GNA. She has been coming to the house to pack the open wounds [seromas] twice a day. Today she starts a new job so I'm hoping the doctor will push it back to once a day or maybe work something else out for us. If I pay my copay for a home health nurse it will cost me $60 a day. When I ran out of the packing strips [iodoform 1/4"] it cost me $100 for the emergency room visit to get the wounds packed and get a prescription of the packing gauze. Then the pharmacy charged me $16.97 for a bottle of the gauze. They left their label on it $6.99. I guess my insurance didn't cover their overhead. The money part of this is a killer. Thank God my daughter was able to step up and save me!

    0 Comments
  9. 9
    • BeckyTice
    • Experience with Colorectal (Colon) C...
    about 4 years ago
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    Lynch Syndrome

    Other Care

    Well tomorrow all the tests will be in and the oncologist and I can sit down and have a frank talk. I already know my newly configured colon just isn't working right. Pencil thin poop and mild constipation bother me. Then there are the stomach cramps. I know my seromas are healed ok. That's good but I've developed an itchy rash on my stomach and my spine. Actually the rash has been on my back for some years but now it's growing and itches so much more. I don't know if it's related but since the surgery it's getting worse. Hubby and I have had a lot of talks. He knows there are a lot of treatment paths I'm not willing to take. I hear that I have a 97% survivability for the next 5 years.... but is that all there is since I have the complication of Lynch Syndrome? When and where will the next cancer pop up? Is it a pretty good bet that more cancer will show up? Maybe I should have put this under questions because today I have more questions than answers. Tomorrow I'll know more. I'm going to the doctor alone.... I want to make decisions so those around me won't influence what I do with my life.... I love my family dearly. Confusing huh!

    0 Comments
  10. 10
    • BeckyTice
    • Experience with Colorectal (Colon) C...
    about 4 years ago
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    Started a blog in my favorite off topic site.

    Milestones

    I have had an unreal life so far. I don't know if any of you would be interested, but I've started a blog to kind of put it all in writing for any who might want to take their minds off their own lives for a few minutes. Here's a link.... I've been on this site for years. It's safe in that I've never had a virus problem from it. I've been going through the gospels on the religion forum.... I'm hotcoffee OK here's the link.... let me know what you think... http://forums.somd.com/blogs/hotcoffee/

    0 Comments
  11. 11
    • BeckyTice
    • Experience with Colorectal (Colon) C...
    about 4 years ago
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    Milestones

    I have a feeling that today will be a milestone. I go to the oncologist today. All the tests are in. Now I will find out what my future may be with Lynch Syndrome.

    3 Comments
  12. 12
    • BeckyTice
    • Experience with Colorectal (Colon) C...
    about 4 years ago
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    Milestones

    You know.... I haven't been on lately but I've been watching you all some and I've started following a few. I'm not sure where my journey is going to take me now. I have to go back every 3 months for tumor marker blood work. The Lynch Syndrome came back normal.... what ever normal is.... no chemo.... the 2 seromas have healed. My insurance company paid for the nurses that came out twice.... there was no offer of thanks to my daughter... except from me. I don't know what might happen next, but I'm not waiting for the other shoe to drop. My odds for a 5 year survival rate is 97% according to the oncologist. Odds for a 10 year survival go down to 75%.... guess I'll be monitoring this site for a while. Keep working like you are... and thanks to GregP_WN for being so diligent. You're doing a really great thing for a lot of people. Well be checkin' back.... leave me comments.... Becky

    0 Comments
  13. 13
    • BeckyTice
    • Experience with Colorectal (Colon) C...
    over 3 years ago
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    Cancer is back/Recurred

    Oh No

    Saw the Primary Care. I have to admit, I've been putting everything off. I'm sure I'm not in a boat alone on that one! Now I have a mass and some pain. CEA is higher than it was when they found the original cancer. Guess I have a rotten gut..... just like the fortune told me 45 years ago.

    0 Comments
  14. 14
    • BeckyTice
    • Experience with Colorectal (Colon) C...
    over 3 years ago
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    Polyp removal

    Procedure or Surgery

    My colonoscopy went as normal but the results were better than expected. All the biopsies were Pre Cancer.... yay

    Went as Expected: Strongly Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  15. 15
    • BeckyTice
    • Experience with Colorectal (Colon) C...
    almost 3 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    I'll fill this in as I progress. Chemo starts Tuesday. The nurses seem to be nice.

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    1 Comment
  16. 16
    • BeckyTice
    • Experience with Colorectal (Colon) C...
    almost 3 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    I start Tuesday.... the 14th.... The nurses seem to be nice. I'll grade this as I go. It's good to see you all but it's a bummer to be back. You know what I mean...

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  17. 17
    • BeckyTice
    • Experience with Colorectal (Colon) C...
    over 2 years ago
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    Procedure or Surgery

    Well, now that I'm home.... I have time to look at my circumstances. I'm really really sore and I'm in pain sometimes. I was in pain before so that's not a new thing.... the soreness.... well after going through major surgery if you're not sore you should express concerns over that.... so this is normal for me. I have two drains. These drains are actually two tubes coming out of my belly. There's one on the left [that doesn't drain very much] and one on the right [that is generally pretty active]. I have to empty two balls [they are called grenades and they look like grenades actually] three times a day, measuring the contents, noting the color, and dumping the stuff down the toilet. I've done it twice since I got home. It creeps me out but I can live with it. I'd send a picture but it would gross everyone out. I lost a couple of pounds in the hospital. That's pretty normal too because I was on a clear liquid diet for 2 or 3 days, have no appetite, and the food at the hospital sucked. I have a slice right down my belly. It's pink where it joins. When I was in the hospital I had some kind of vacuum bandage on it that held it together. I now have sterile strips across that fall off on their own. From what I can see.... it's doing ok. The problem is.... I can't see my belly. [a home health nurse will come by in a couple of days to check on me to make sure I'm still healing ok]. The part of my belly that was below the belly button [was below because I don't have a belly button anymore] feels like my gutts are tumbling out. I have an abdominal strap I can use if I'm going to be on my feet too long. I requested it, and it helps. Because I have the two drains.... I can't wear it too long because it irritates the drain sites. So I don't wear it when I'm going to be laying around and walking only occasionally. I'll use it more when the drains come out. I just put my hand over my lower belly when I'm walking to hold it in. Remember... They had to slice through my abdominal muscles to get the tumor out. So I have no abdominal muscles to act like a girdle. I have a mesh on the inside now that will help to hold everything in place. Remember.... this was step 2 in the original plan. Step 1 was 5-FU chemo, to shrink the tumor. This surgery was step 2 and from here I'll go to Step 3 which is more chemo.... Folfox this time which should mop up the rest if the plan works. Remember there was more cancer in the colon to the stomach.... that's what we're going after next. I agreed to do this in the beginning [back in October]. I've increased my lifespan by about 3 years. The surgeon said there's and 80% chance I'll make it to 5 years now. That's progress. I don't mean to creep anyone out. I had no idea what I was really getting into. It's harder to do the treatments if you don't know what's going on. So maybe by writing this I'll help someone who is just diagnosed. I'll copy all this to the other cancer sites I visit so I'll get it out to a larger audience of people who are dealing with Stage 4 Metatastic Recurring Colon Cancer or caring for someone who gets this diagnosis. The doctors know but no one can explain it who hasn't been through it personally. So keep praying and please send this out to others who might have a need or questions. I'll be happy to let them in the group. The more, the merrier... lol I won't be going anywhere for a while. I can't drive. I'm back on the pills by mouth again.... back to writing everything down. So life is getting back to my normal. Hang in there everyone.... keep browsing, the posts from here out won't be so creepy. LOL Becky

    Went as Expected: Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    1 Comment
  18. 18
    • BeckyTice
    • Experience with Colorectal (Colon) C...
    over 2 years ago
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    Drug or Chemo Therapy

    I opened a facebook page so that friends and family could follow my journey. I'm trying to impress the importance of early detection so they can avoid the roller coaster that is Stage 4 Recurring Metastatic Colon Cancer. Here's a link https://www.facebook.com/groups/CRECancerSupport/

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  19. 19
    • BeckyTice
    • Experience with Colorectal (Colon) C...
    over 2 years ago
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    Pain medicine

    Drug or Chemo Therapy

    After the surgeries, after the seromas, after the chemo.... there's the battle to get off the pain killers. I'm not in pain anymore so why should I have to take the pain killers.... Doc says I'm cancer free [hope he's right this time].... so why should I have to take the painkillers. I've been taking oxy for a long time. At first I was afraid of what would happen when I just dropped one pill from my daily schedule. My oncologist hasn't given me a plan to get off the pills he prescribed. My surgeon hasn't given me a plan to get off the pills she prescribed. She, as a matter of fact, just recited the directions to me one more time. So I came up with a plan of my own. I counted the pills on hand, and decided to cut the dosage slowly. I've been at it a couple of weeks now. I'm down from 20mg daily to 5mg daily and after tomorrow I'll be on 5 mg every other day. I checked with my PCP and she liked the plan. At first I felt like I had a really bad case of the flu. But it subsided after the second day. Now my old familiar headaches are back.... but a couple of Tylenol beats them back. It's a lot better than that oxy. I've been taking stool softeners because of the pain meds causing constipation. I guess next I'll have to cut them back a little too..... Getting rid of the cancer is what the doctors do.... getting rid of all the other XXX.... that's up to us....

    Easy to Do: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  20. 20
    • BeckyTice
    • Experience with Colorectal (Colon) C...
    over 2 years ago
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    Mental....

    Milestones

    Now that the oncologist says I'm cancer free [again]... I'm dealing with a lot of feelings. I'm afraid the other shoe is going to drop I'm angry that they told me I only had a couple years left and now I'm cancer free I've lost my job... I'm on disability.... and I'm stuck...so I'm angry I'm still not able to look in the mirror.... I've aged so much I'm still not able to look in the mirror... I've been gutted and I have not belly button.... just scars... I want to know what allowed me to go to stage IV metastatic recurrent when the surgeon and the oncologist at the big city hospital said.... your cancer is gone... no need for chem.... I love my life.... and I want to get over these feelings... I'm sure it will take time.... but I'm dealing with the aftermath.... [hopefully it's the aftermath]

    0 Comments
  21. 21
    • BeckyTice
    • Experience with Colorectal (Colon) C...
    6 months ago
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    Decision Point

    Now they want me to have an "Advanced Colonoscopy". See, I have a carpet type colon cancer. When the original surgery was done the surgeon left behind some precancerous carpet. That was in 2013 I think... the years are foggy now but the procedures and the meetings are crystal clear.... funny how that goes. Anyway, now the gastro wants another surgeon to go in with a special tool to get the carpet left behind. They say they think it's still just pre-cancerous but they want to get it out before it becomes cancer. My CEA numbers are stable. According to the CEA numbers, nothing is growing... it's just there.... The surgery may cause a puncture, which would lead to an ostomy bag.... and I said all along... I won't do that.... So for the third time now... I went to my PCP.... talked it out and once again I've decided to forego the advanced colonoscopy.... I already lost my belly button due to this cancer.... I'm not going to wear a bag all day and all night because of it.... just not in the cards....

    0 Comments
  22. 22
    • BeckyTice
    • Experience with Colorectal (Colon) C...
    6 months ago
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    Decision Point

    No more surgery.... I don't trust them any more. I went to the "best robotic" surgeon in town. He was at George Washington University Hospital. He had a fabulous write up on line. He would have me back on my feet and working again in a few weeks, not months, weeks..... He left two surgical clamps in me, pre-cancerous cells, and oddly enough a few months later my cancer was growing where his robot entered and exited my belly. The next doctor.... he was going in to take the cancer out.... sure I'd loose my belly button, and half the nerves never grew back so I suffered 3rd degree burns from a heating pad that I didn't feel because I didn't know I lost my pain sensors.... but I had a wonderful new mesh insert that held everything in so nicely under my weird new belly..... but I was "cancer free".... I only had that tube and bulb to empty every day.... to take the fluids away from the deep wound. This surgeon was from Johns Hopkins Hospital.... one of the top centers in the nation... what could go wrong? I didn't feel much relief when after several months I was called back to take the tube out even though it was still pouring out a full bulb at least once a day..... why was it ok to remove it now when it was draining too much before? "The body absorbs it." Why was this different? But he's the surgeon and he knows what he's doing, Right? Then the local surgeon "agreed" to go in and clean out the infection.... mesh gone.... hernias now a part of life.... wear a girdle.... ok.... you guys know what your doing.... ok.... There's some pre-cancerous carpet in your colon.... we'd like to do a surgical colonoscopy to remove them. They have been there since your original surgery but now all of a sudden we need to get up there and dig them out.... ostomy bag? Sure there's a risk but this is cancer.... we know what we're doing.... Yeah right....

    1 Comment
  23. 23
    • BeckyTice
    • Experience with Colorectal (Colon) C...
    5 months ago
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    Anniversary

    Celebration

    I quit smoking a year ago. I smoked for 53 years. Now I don't smoke any more. I wanted to quit a few times over the 53 years.... but it just seemed to big a task to take on at the time. There was nothing in the way this time.... so finally I divorced cigarettes.... and I'm not going back.

    0 Comments
  24. 24
    • BeckyTice
    • Experience with Colorectal (Colon) C...
    about 1 month ago
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    Related?

    Oh No

    So now there is a new dragon barking at my heals.... Edema.... does anyone else suffer from swollen feet and legs after colon cancer surgery?

    3 Comments
  25. 25
    • BeckyTice
    • Experience with Colorectal (Colon) C...
    over 4 years ago
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    Seroma have to pack the wounds twice a day

    Drug or Chemo Therapy

    My daughter is a gift from God! I'm so happy she can help me out!

    Easy to Do: Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  26. 26
    • BeckyTice
    • Experience with Colorectal (Colon) C...
    over 4 years ago
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    Problem with doctor

    Oh No

    I went to the first oncologist today. The local guy. I stopped by the office and gave them all the information about how to reach the admin for the surgeon's office to get all the reports. When I got to the office for my visit.... no reports.... had a hypothetical appointment full of hypothetical information for the full non-hypothetical copay expenditure. Dr. said he would have the reports today.... then the admin at the surgeon's office called me when I got home... I'll see her tomorrow.... but she said she sent the information over last week and has the fax confirmation in the file.... way to make a patient feel important there local doc....

    0 Comments