It's been over a year since my reversal and I am a hermit. I honestly don't leave the house unless I absolutely have to and then I take Immodium, (which will mess me up for days) and I pray it works long enough for me to do what I need to do. Before cancer, I was very active and traveled a lot. I'm a writer, so I not only traveled for fun, but also for signings and book conferences and to conventions for my husband's business. I threw large parties for business where I did all the cooking and baking for over a hundred people and I was very good at it. Now, I can barely make dinner for three of us a couple times a week.
There is no predictability to my bowel movements. I've kept logs and journals and charts and I've figured out one thing---my body is going to do whatever the hell it wants to do no matter what I eat or drink. And no matter whether the stool is soft or hard or liquid, it will cause great pain as it irritates the scar tissue left from the surgery and the radiation. Sometimes my worst times are during the night, sometimes it's during the day, and it always seems to be bad during dinner and immediately after, which makes it difficult to enjoy time with family or friends who have come to visit me since I can't visit them.
I had one infusion of Folfox which caused such a severe reaction in my body that I wasn't allowed to have any more. My single infusion was in December of 2015 and my blood levels still haven't returned to normal. Eight of them are still out of whack, including my iron stores, which just won't seem to go above 12% even though I've been taking iron supplements for a year. I have one or two days a week when I have some energy and ambition. The other days are struggles to even get out of bed. And who wants to get up anyway when standing makes the stomach cramping and the feeling that you have to go come on stronger? But I do get up and I try to do as many as I can of the things I used to do around the house before I got sick. I had four major abdominal surgeries before all this cancer stuff started and I always bounced back surprisingly quickly. I think the fact that I'm just not bouncing back is what is depressing me. I put on a good front for my loved ones, but then I cry in the shower where no one can see or hear me.
I need to visit the dentist. I need to set up weekly injections for the osteoarthritis in my knee. I'm supposed to visit a back surgeon and a specialist to repair bladder prolapse. How do you do all that when you are chained to the toilet? I still have numbness in my feet from the Folfox and I can't lift my right arm above my head because of a persistent pain in my bicep. I was told over and over it was from sediment in my port or my port pressing on a nerve, but my port has been out for almost a year and the pain is still just as strong.
A couple of weeks ago, I was going to the bathroom and suddenly felt a wave of heat rush over me. I felt like I had to vomit. I got up and walked to the bathroom sink to get a cold washcloth to put on the back of my neck and---blackness. I passed out, hitting my temple, ear and shoulder on the door frame and my head, knee, and hip on the tile floor. I've only passed out once before and that was when I had a fever of 105 with pneumonia. I asked the oncologist what could have caused it and he said your vagal nerve can be triggered by straining on the toilet and cause your heart to slow too much and then you faint. So now I have to worry that the thing I do twenty times each day can cause me to black out?? More fun.
And over a year after my LAR incision that came open finally healed shut, it has started oozing again and surprise---a black stitch has worked it's way up through my skin. Who knows what it's attached to or how long it is. I guess we'll just wait and see.
I don't know if it's the exhaustion of dealing with all of this, the seven rounds of general anesthesia I've had, or the chemo, but my brain is definitely not as sharp as it once was. I used to write full length novels and now I struggle to find the words to form simple sentences in conversations.
I am grateful that I'm NED for now and that my tests have come back with positive results since my LAR. I waited for a year for things to get better because everyone said there could be improvement up to a year after reversal. My year has passed and I guess this is as good as it's going to get. If I had another illness, I could decline invitations by saying I was still having headaches or was still too sore to sit for long periods, but when the reason you don't leave the house is because you have to poop twenty times a day and sometimes on very short notice, it's not information you want to share with every co-worker, business acquaintance, or your college reunion committee.
I'm going to re-read the reversal threads for the tenth time to see if there is any trick, tip, or advice that I missed that could help me. I'm going to try anything and everything that might help me get at least a portion of my life back. When I've exhausted all other options and daily enemas are all that is left, I'll try that. The only thing I won't do unless it's absolutely medically necessary is go back to having a bag. For me, with my paper thin skin and all the pain and raw sores it caused, that isn't an option unless I have no other choice to survive.
You aren't alone, Rob. There will always be people who have it worse than you do, but that doesn't mean you have to feel bad about sharing real concerns and issues. If a friend broke his arm, you wouldn't make him feel guilty if he complained about the pain just because you've had cancer, would you? We've all suffered here, from caregivers to members from Stage 1 to Stage 4. Pain is pain and whether it's emotional pain, physical pain, or psychological pain from this wretched disease, we've all had to deal with some portion of it. Talking about it is good. Look how many members, including me, have felt liberated to express feelings they've kept bottled up because you opened the door. Thank you for that.
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4