New to forum, dealing w/cancer again & looking for support.

Just a bit about me. I'm 31 years old currently. I was diagnosed in 2014 at 29 as having a really rare cancer - appendiceal cancer. I've had 2 major abdominal surgeries both in 2014 and 2015, and am scheduled to be opened up AGAIN in a few months. Devastated doesn't even begin to cover it. Depression doesn't do it justice either. I am scared that they will have to keep removing organs from me and I will eventually die young. 

It all started in February 2014 with a bad abdominal infection. Was sent to the ER where they put a drain tube in my belly to remove the infectious liquid that was making my abdomen swell. Then I was scheduled for a routine laparascopic appendectomy in 3 months once the swelling went down.

May 2014 came and they went in laparascopically, only to find a large 10 cm tumor that had been hiding underneath the infection. The tumor was attached to several things, so they removed my appendix of course, half of my colon, my right ovary and tube, and shaved off bits of my uterus and bladder.. The incision went from my belly button all the way down to my pubic region. For never having a surgery in my life, that was really traumatic for me, and I am such a hard stick that it took 3 anesthesiologists, 2 nurses, a doctor, and 14 sticks in both of my arms, hands, and my foot just to knock me out for surgery! Not to mention my poop has NEVER been the same since. Nightmare fuel...

So over the following months I healed and we thought things were going well. The first 3 month scan was clear. The 6 month scan came back with a 7 cm tumor. 2 months later the tumor had grown to 10 cm and was surrounding my remaining ovary. I was bounced around to several different surgeons and oncologists and my case discussed with 3 hospital tumor boards before they settled on an even more invasive and aggressive procedure called the HIPEC. This time I was hospitaled in March 2015, and the incision went from 4 inches above my belly button back all the way down over my old incision. The HIPEC is a general debulking surgery combined with 90 minutes of hot chemo "bathing" my abdomen. Also post surgery, turns out the 10 hour surgery ended up damaging a nerve in my left leg so it was completely numb on the inside from ankle to thigh and I could not walk. So not only had to heal from major surgery again, but also had months of physical therapy afterwards so I could walk again (although my thigh is still numb). In that surgery they also removed my remaining ovary and tube. 

So again, we thought things were going well. I mean, they did the newest, most aggressive surgical procedure they knew of. 3 month scan was clean. 6 month scan shattered all my high hopes. The cancer was back and is now around my spleen, and in between my uterus and bladder. So in December 2015, they began chemo on me. They want to do 4 cycles, then do another scan to see where it's at. The oncologist said the success rate of the chemo for my cancer is only 35%!! but said if we do nothing, of course it will grow and become fatal. Then in a few more months, they will wean me off the chemo and do yet another HIPEC and remove my spleen, and possibly my uterus. So another major, horrible, terrifying surgery and recovery.

So here I am, going through chemo and a lot of its horrendous side effects. my fingers are tingling now as I type this.

Also a bit more history, my beloved dad passed away right before my 24th birthday, and my mother was diagnosed with Alzheimer's and dementia shortly after (she's now in a nursing home and doesn't know who I am or that her youngest daughter has been fighting cancer the past couple of years). My sister and my husband are all I have on this earth that are making me want to try to keep living somehow.

I guess my issue is just this: how much is one person supposed to endure? Am I being punished for something? it may sound silly but I have thoughts like this swirling around my head all the time. I've been to a therapist and I am already on an anti-depressant. But i just still am having trouble dealing with all this. I've been going through all the stages of grief - anger mostly - but I just can't get to acceptance yet. it's just so unfair.  

  • Hi there, I just read your entire post and I have to say you certainly have been through a lot in the last while. You have certainly come to the right place though as you will find people on this forum to be very caring and supportive, so welcome. I hope writing about your experience with cancer helped a bit in getting it out there and sometimes just doing that lessens the pressure we are under when dealing with issues around cancer. Its good that you have your sister and husband there with you for support as you go through this. I'm sorry you are again facing another surgery, you certainly have had more than your share of them. Keep posting on here to let us know how you get along. Best of luck in your upcoming surgery.

    Take care and sending you hugs.

    Lorraine

  • Thank you very much Lorraine for responding! I wasn't sure anyone would read my entire post (I know it's lengthy) but it did make me feel a little better to get it out there. I just got done with my third chemo infusion and will have my cat scan in 3 weeks to see if anything has changed. I will update once I know something, good or bad. :)

    Jenny

  • Hiya i just read this and my goodness you have been dragged through the mud and back. Im so sorry to hear this has all happened. i was diagnosed with liver cancer last year and still fighting it with every strength i have got. I have to be honest never heard of that cancer so i can see why it would be rare. i understand your poo would be different with getting half your colon out. your one brave person thats for sure im 72 and i dont think i would of even gotten as far as you have my petit body wouldnt take that many operations. love to hear from you-Diane x

  • Hi Diane, thank you for taking the time to read my story. I am trying to be strong, but as I'm sure you know, some days are better than others. What is more irritating about my cancer is that it's "the gift that keeps on giving..." even though my appendix was removed in 2014, the cells keep multiplying. 

    I am so sorry to hear about your liver cancer - it seems every cancer is different so I couldn't imagine what you are going through. I wish you a speedy recovery and that you'll beat it!!

    Jenny

  • Hi Discordia yes some days are better than others. I know i dont understand why cells keep growing its just cancer it does not give up without a war. Im doing fine right now quite well to be honest im down to 1 bout of chemo a week so thats really good and from what im hearing i can survive this they think but we just dont know whats round the corner. Take care -Diane x