August 31 - a day I hate, but a day that saved my life

Kathryn_in_MN Member Posts: 1,252 Member
Today is my cancerversary - the day that forever changed my life 2 years ago. I finally found out what was causing my awful pain, plus causing mucous and blood in my stool on and off for 2 years. I was almost fully obstructed, so my colonscopy was over as quickly as it started. The surgeon was called, and the wheels set in motion. On September 2nd, I had surgery, and on September 4th I got the staging of IIIc and was told I would need chemo to make sure we killed any stray cancer cells that surgery did not remove. (Later a PET before starting chemo would challenge that staging, making me a possible IV, but not certain.)

After surgery and 12 rounds of FOLFOX (and many, many complications that year), I was declared NED in May 2010.

Then we move to August again...

One year ago on August 31st I had a PET scan that confirmed my rise in CEA was connected to a continuation of my cancer. I really was a stage IV all along. This time, no surgery, just a CT guided biopsy on September 2nd, which really confirmed it all. Three distant lymph nodes was the total involvement.

The last year I have been on chemo constantly, with an extra week break a couple times, and an extra three weeks last spring. I'm tired of the chemo wagon and want to get off. We had planned to move from every two weeks, to every three weeks and see how that goes.

But here comes August again... this month I found out that I had a partial, but not total response to chemo - and after the scan with those results, my CEA started rising. But, no major medical procedures this year on August 31st! I'm still at battle against the beast, and in a transitional phase once again, searching for alternatives. I'm looking into surgery, SRT or cryoablation to go after the 4 or 5 nodes that are currently mets. During this last year, my oncologist and the Duke Tumor Board agreed that ongoing chemo is the best treatment for me - palliative - not curative. I didn't want to agree with that when my oncologist told me. Then when the second opinion agreed, I gave in. But after a year of living with chemo side affects again, and doing more research, I'm not content to continue doing nothing more than putting poison in my body.

While I don't expect surgery, SRT, cryoablation, or any other procedure to cure me, I do think they can buy me more time. I'd rather play the whack-a-mole game with an option other than chemo, especially if Irinotecan is coming to the end of usefullness for me, which leaves me with FOLFOX again. I don't even want to think about that...

Tomorrow is chemo day again... The start of year #3. I'm dreading it. I finally have had a few days of feeling strong enough to get some things accomplished. I'm on a role doing spring cleaning (out of season) in my house, and don't want to stop. But I'll be forced to stop by the chemo. The next few days I will focus on trying to keep enough fluids in so I don't dehydrate, and not much else. The days after that I work on getting more nutrition in, and trying to stay awake and staying caught up with my business. I'll spend many days battling severe diarrhea, when I don't dare go out and do the things I'd like to do. Then I'll finally have a few days of enough energy to work, and get some projects done around the house. But I won't make much progress, because within a day or two, it is chemo time again...

So another year starts for me in this battle. I am very happy to still be in battle, considering the alternative in my case. I thank God for getting me through the last two years, and keeping me here. But I'm tired of the weapons I've been using, so I plan to switch them up. Fall of 2009 I had many, many medical appointments, procedures, and surgery. Fall of 2010, I had many medical appointments, and procedures again (including having my 3rd port put in, and getting a punctured lung and another hospital stay). This year I will be looking at many medical appointments again - searching for the right doctor or team to take on my case and attack with a new weapon. And hopefully this fall I will have procedures again - to remove the cancer, or kill it with something other than chemo. I hope that next August 31 I'll be temporarily NED, and not on any chemo. I'd like to have a GOOD August 31st and break this cycle!


  • damama24
    damama24 Member Posts: 174 Member
    August 31st
    Katherine I so sympathize with your situation. I was dx'd only a few days before you in august of 09.I have been on chemo ever since. Both surgeons I have seen have deemed me to be inoperable. Besides the primary colon tumors, have liver mets, a tumor in my right ovary and distant lymph node involvement. To many places to operate on. I too am sooooo tired of the constant chemo. I hope that you are able to find a team that can help you reach NED. MY onc told me today that she is amazed at how I'm doing. I'm lucky that I tolerate chemo pretty well, but the every 2 weeks schedule does get to be a real grind. Today was my 49th round of chemo. I decided to take a month off and my onc supported my decision. My CEA will probably take off again, but I really need the break. Sorry starting to ramble. But, I do hope you get the answers you so want and a team willing to be aggressive as you need them to be. Will be offering up prayers,good vibes, smoke signels whatever it takes. Stay strong.

  • pepebcn
    pepebcn Member Posts: 6,331 Member
    Hi Kath !
    I understand your position ! I feel exactly the same as you ! hope this year gives us a rest from chemo to both I pray for that, Friday I got
    an app.with my onc and will ask him for a rest, I been told about vaccines much less aggressive than chemo may be you can ask for it as well!
    Hugs my dear friend!
  • marqimark
    marqimark Member Posts: 242 Member
    You both are stronger than me
    I feel like I barely made it through eleven treatments. I do not think I could have survived the regimen you guys are going through.
  • maglets
    maglets Member Posts: 2,576 Member
    marqimark said:

    You both are stronger than me
    I feel like I barely made it through eleven treatments. I do not think I could have survived the regimen you guys are going through.

    so stong
    Kathryn, Debb, are all so strong

    your stories bring tears to my eyes tonight

    what a fight

  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    You're amazing

    I love you. That's all.

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    I know it's been very rough for you ever since you came here. I too am hoping that you can find some break in between chemical treatments.

    These last 12 nearly wiped me out, in fact this past year just 'bout did me in completely. The consistency of doing radiation every day for six weeks with chemo and then the big gun chemo every 2 weeks, just doesn't do a body good.

    I've been off for four month, but I'm not what I was before this last recurrence. I have returned to work and trying to pick up the pieces, but my body is still pretty beat and when I get in in the evenings, I'm spent and exhausted. Even on the w/ends, I lose energy after 7pm. I do the best I can and work is my first priority, everything else is after that.

    I'm wearing the "Illusion of NED" that you spoke of in one of your other posts. It's inconceivable to me that after 7-years, I'd finally get it right, and not think that cancer will again come a callin'.

    Until then, I'm just happy to have a short break to try and heal my body some. Too many more of those treatments and eventually I'll have to start kissing some things goodbye - I know that.

    I won't patronize you with things like "Stay strong" as you've already demonstrated that you can do that. I will just continue wishing you the best and hoping for that much needed break that you so rightfully deserve.

    Best Wishes!
  • karen40
    karen40 Member Posts: 211 Member
    Stay Strong
    Hi Kathy,
    I pray that you get the break you most deserve and long before August 31 of next year. Positive thoughts coming your way.

    Pepe and Deb,you will also be in my prayers. Good vibes coming your way.
    With love,
  • RickMurtagh
    RickMurtagh Member Posts: 587 Member
    I hate that word, not as bad as cancer, but it still sucks. Glad you have such a good attitude. Here is to hoping for a good August 31, 2012 (and 2013, 2014, etc.)!