My colonoscopy and updates

Kathryn_in_MN

I do the Miralax prep, and wanted to share that using Powerade green (sour melon) was great! It was very easy to get down, even easier than Gatorade blue.

Once again I was awake and alert for my procedure, but they did give me a little more meds than the first one. The GI said my situation was very unusual first time and he didn't think we'd have any troubles this time. I did have two times when I had to do deep breathing to get through some pain in the procedure, but overall it wasn't bad. I got to see my staples and the inside of my clear colon. I'm good for 3 years now! My husband who has not had colon cancer has to go back in one year because he had 5 polyps removed (two of them quite large). It seems kind of funny that I get 3 years off and he only gets a year. But I'd much rather have a colonoscopy every year than colon cancer!

I haven't been posting much for a while because I've been busy living life and catching up on everything I'm behind in. Ten months of getting further and further behind with work and projects at home leaves a big pile!

For those of you Stage II or III just starting your battle, or in the middle of it, there is an end. Truly there is. No matter how many awful or weird problems you have (and I had more than my share), there is life after surgery and chemo. It was hard for me to belive the day would come that I could feel better again with all the problems I had, but now each day I am getting stronger. The infection I got after having my port out has healed. I don't have to spend time every week with doctors and medical facilities. Right now I have to get labs in August, labs and a CT in November, labs in February, and labs and a PET in May. What a relief to have so much more time for myself instead of appointments! They only get my time once every 3 months now. It is like I had a really bad nightmare than I just couldn't awaken from, and then I did wake up. And it is all just a bad memory.

I do have a few leftover reminders, like neuropathy in my hands and feet. My hands are just starting to seem a little better, but my feet are still bad. One thing I didn't really realize is how much worse it can get after you are done with chemo. My neuropathy got worse for the first month before stabalizing. It seems to have triggered the RSD in my right foot which had been in remission. But I'm alive and not having to do any more chemo, so I really can't complain. I do think knowing what I do now, I would have stopped the oxaliplatin one cycle sooner. For anyone struggling with that decision, be aware that your neuropathy might get a lot worse after you stop than it is right now.

My hair is starting to fill back in. You aren't supposed to lose it on FOLFOX, but I lost 90%. My "new" hair is softer and different. I used to run on 4-6 hours of sleep per night. Now I need 8-10. This is a little frustrating for me, but for a lot of people it is a normal amount anyway. One strange thing is that my tongue is still sore a lot, and bothered by many different foods. I don't have the actual big sores much anymore, but I have gotten a few here and there. I really didn't expect that. The severe GI issues caused by chemo have gotten a lot better. I'm not fully back to normal, but much better than before. All of the awful side effects do start to resolve after chemo is done. It takes a while, but week by week you get better.

I'm back in the saddle again. In the last couple weeks I got in 20, 13, 18 and 41 mile rides. It is so wonderful to be on my bike again! It is a little weird biking with neuropathic feet, and sometimes a little painful, but it can be done and I won't let a little neuropathy stop me! I'm trying to work it out to ride RAGBRAI (Registers Annual Great Bike Ride Across iowa) one or two days mid-week. My husband and I used to ride the full week, till health issues stopped us. One summer was a hysterectomy for me (cervical cancer). Then he had a bad accident which took a few years of rehab for his foot, leg and knee. Then I got RSD. When I got it into remission, I was dx'd with colon cancer. It has been a few rough years, but we're both doing better now, and ready to ride. I don't have enough strength back to ride the full week, but I plan to do it next year again.

I attended my high school reunion and was a bit shocked to find out that out of about 20 women there from our class, two of us have had two primary cancers. And one of those was colon cancer for both of us - both diagnosed in our 40's. We've lost one classmate to breast cancer and everyone was aware of that. But they weren't aware of June's battle with colon cancer, and some didn't know about mine either. June is 6 years NED now after a dx of Stage III. That gives me a lot of hope! I took the chance during our "personal update" speeches, to give my colon cancer screening spiel. Some in our class will be 50 next year, others in two years. And I will keep reminding them to get their colonoscopies. I also use FaceBook and my business website to promote colon health. It is time that colon cancer and screening gets the attention that breast cancer does. No one is afraid to mention breast cancer anymore. But a lot of people won't bring up colons. I will!

In May I walked the Get Your Rear in Gear 5K shortly after finishing chemo. Last weekend I walked with a friend in the Survivor lap of Relay for Life in our county. I am captain of our team for our Relay for Life, and our city event is next weekend. I've raised $660 so far and plan to raise more with a fundraiser at the event. I've been spending a lot of time spreading colon cancer screening and awareness and plan to keep it up permanently. Lots of friends and family have been getting their colonoscopies because of my diagnosis and my preaching. It is nice to have something we can do to make us feel empowered to fight back. If my nightmare and cancer fight can help someone else I care about from going through it all, then it was worth it. We all need to spread the word that colon cancer is preventable, treatable and beatable. And we especially need to get the word out that screening is NOT only for those over age 50, but also for anyone with a family history of polyps or colon cancer under age 60 (get screened 10 years earlier than relative's dx), and for anyone with undiagnosed symptoms like weight loss, blood in stool, thinning stool, bloating or pain.

I pop on to read quickly once in a while, but often don't have time to post. I think about all of you often and hope for the best for all of you.

tootsie1

Good deal
I'm glad you had a good colonoscopy! I have not done the Miralax prep, but I do take it twice a day because of the severe issues I've had since my resection. Miralax really doesn't taste like anything to me. I put it in hot tea and never know it's there.

Again, so glad about your results!

*hugs*
Gail

thready

Good Job
Kathryn, just think back to the "early" days. It seems so very long ago now. My neuropathy issues are slow to resolve, might not even get my toes back. My balance is not good, but I can negotiate if I am slow. I also wished I had stopped oxy sooner, but it is what it is!
I am back to my "normal job working 3 days a week because work is slow. I am also working on my little business, added a new "division" to it and working on home repairs with my husband. The house chores seem never ending and all the mess that happened because I was not there during treatment to check on on it!

But I am getting back to being myself and that is so cool. I love the simple everyday things. I even love my weekly job. I don't care anymore about the nonsense that seems to crop up, I can now just ignore it. I can say now life is good!

It was good to hear from you.
Jan