Oct. 2014: Summer's Gone; Fall is Here!

I've been thinking of writing this blog post since the end of August!  I realize I've lost most of my readers by now, but I would still like to share the "after cancer" life.  Many who stop by here have cancer, and I feel it might be helpful for them to know what life might be like after treatment is over. Also, it's important to me to let others, who haven't experienced cancer, know what life can be like.
How many of you thought that if you get cancer, and it hasn't spread, that you go through some treatments that make you sick and lose your hair, and then when you are finished you go on your merry way--never to think about cancer again? Show of hands?? Mine is raised too!  I think I probably realized that life might be a little different for a survivor--you know, they stop and smell the roses more, that type of thing.  Let me share a bit with you what life is really like.
FOLFOX is the standard chemo regimen for colorectal cancer.  It does a great job of killing cancer cells.  It also kills good things--like nerves, hair follicles, toenails, the skin on the hands and feet, etc.  I've heard of people losing their hearing and having heart attacks from it.  If you've ever had FOLFOX, you will probably have some sort of after effects from it.  4.5 years after finishing, I still have burning, numbness, and tingling in my hands and feet.  I also had AC+T chemo for breast cancer.  I completely lost my hair (which is still thinner now than before), and the Taxol made my neuropathy worse.  It's another nasty combo that can also cause heart trouble.
Then there is the colon surgery.  If you are fortunate enough to have a tumor that is high in the colon, you may not have as many issues as a person with a low tumor.  But it is still a major surgery, and your colon will work differently, and there is always the risk of strictures and blockages caused by scar tissue. People with low tumors (like mine) have all sorts of changes in their bowels.  Some days they can hardly leave the bathroom, and then, without warning they can be constipated for for several days. Some can't work because the issues are so bad.  Some who had a temporary stoma, that was reversed and their colon was reconnected, have asked to go back to a bag because having to constantly "go" is ruining their life.  Breast cancer surgery can cause "frozen shoulder" which can last for years, and some people never regain full use of their arm/s.  Some surgeries move muscle around and then those people need physical therapy, and, again, they may never be able to get back to where they were before surgery.  If lymph nodes are removed that person will always be at risk for lymphedema--which is swelling in the arm.  They may need special massages, phys. therapy, and wear special sleeves.  Once it starts, it never goes away. Oh, and it's usually not just one surgery for breast cancer, but many, over the course of many years. Did you expect your co-worker who had breast surgery to come back to work and be able to lift and carry and do everything they did before?  Well, they may need to do things differently, and may be gone a lot for therapies and surgeries--be kind to them!  And pray it never happens to you!
Some people who have cancer also have to have radiation.  I had it for both my colorectal cancer, and my breast cancer.  For some, this is the worst of all.  There are lots of internal organs that also get blasted, esp. when the cancer is in the stomach or pelvic area.  There are too many problems that can happen to even list here.  Some are scar tissue build-up, colon and bladder scar tissue and bleeding, skin that never heals or is always easily irritated, weakening of structures that can lead to fistulas, hernias, and ruptures, and on and on.  Other than tightening of the skin on my chest and armpit, I have not had too many side effects of the rads I had for breast cancer.  It most likely caused some scarring on my heart and lungs, but hopefully I will never notice that.  It also increased my risk for skin cancer and lung cancer--it is radiation after all! Both chemo and rads increase risk for cancer in the future.
Ok, those are only some things that can happen to colorectal and breast cancer survivors--there are many other types of cancer, each with their own set of problems. If you read all that, I want to thank you. You are a person who cares about others and wants to be aware of what people with cancer go through.  Expecting your friend, co-worker, or loved one to be back to "normal" after their cancer is gone is not helpful.  Ask them how they are doing, what side effects they still have, what help they may still need. I have a friend that just finished a long and difficult treatment for stage 4 colorectal cancer, and she is getting a break, but no one knows for how long.  Her family has been pressuring her to go back to work, and they don't want to hear about any of her problems--she was even told she was making stuff up while she was still getting chemo!! I can't imagine!  I'm sooooo very thankful for my family.  They know I still have some difficult days, and sometimes I need to miss an event (which when I do I usually end up in tears because I'm sad and frustrated I have to stay home!).  Thankfully, those days are getting fewer.  5.5 years out from my colon resection things are still slowly improving.  I'm STILL learning what I can and can't eat, although sometimes there is just no rhyme or reason to it!  Overall, I am doing better, and even my fatigue is better and I'm not completely exhausted every day after work.  
Today is a "bad tummy" day, which causes me a lot of pain (you know, all those radiated areas!), and I came home from work and took a pain pill. (Which is why I have time to sit and write this--I can't do much else right now!) I hurt so bad that I wasn't going to suffer one more minute! Taking a pain pill is very rare--I took a 1/2 a pill about 2-3 weeks ago, and before that it had been about 6 weeks since I needed one.  I had another surgery on my backside in Aug, and will need another one soon.  Repairing things "back there" is tricky.  One wrong cut could leave me needing diapers or a colostomy (bag) for the rest of my life. Also, radiated skin doesn't heal very well, so I could end up with a gaping wound that takes months and months to heal.  
I had acupuncture this summer for neuropathy, and it helped a bit, but I think I'll save that for another post.  I also need to tell you about my trip to Florida with my "Pearls" (breast cancer sisters!)!  There are some blessings that came out of my cancer journey, and they are a huge blessing to me!
So, that gives me a few reasons to update again soon!  If anyone with cancer comes across this blog, and wants to talk more, my e-mail address is nuttyoaks at gmail dot com.  I have some great resources I can share with you, and am always willing to share my experiences and help you through your treatment!
God bless you all!  Look for another update soon!
Tina

Four Years!

February 6th was the 4 year anniversary of my tumor being found during a colonoscopy.  I was having some symptoms that my primary Dr.(pcp) and gastro Dr. both thought were irritable bowel or colitis.  Thankfully, before my pcp looked further into my symptoms, she wanted me to have a colonoscopy, and then we'd know more what we were dealing with.  We were ALL surprised when the tumor was found. The gastro doc doing the procedure saw it right away (I was given some good drugs, but was fully awake) and said "See that? That shouldn't be there".  After the exam the doc came in and told us he was sure it was cancer, although we needed to wait for the pathology report for the 'official' word. I am so grateful Rich was with me!  We just held each other when the Dr. left.  Then he came back, and told me he had set up a CT scan for me that afternoon.  Things moved really fast!  I remember the nurse giving me a hug when she walked us out and telling me I was going to be ok.  That was so sweet, and yet scared me because I didn't really realize the gravity of the situation yet.  Thanks to my 'happy drugs', I wasn't too upset yet--I told Rich in the truck after to stop looking so gloomy!  Poor guy, he just found out his wife had cancer!  I'm sure he was overwhelmed! (I don't think I'll ever know how hard all of this was on him, as he did a good job of keeping it from me.  He was an EXCELLENT caregiver, and I'll always be grateful for that!)
Like I said, things moved quickly.  My CT scan didn't show any other areas of cancer (except a possible lymph node).  My gastro doc also contacted a surgeon, and an appt. to see him was scheduled, then my pre-op, then the surgery on Feb. 20th, just 2 weeks later.  During surgery, 18" of my colon was removed and I was able to be reconnected.  I came close to needing a colostomy, but am thankful I didn't!  It was a tough surgery, and I was in the hospital 8 days.  2 of 20 lymph nodes had cancer, and I was stage 3b.
My wonderful oncologist told me this type of cancer could be CURED.  Because of my young age (44),  I was given everything they could possibly throw at me!  None of my chemos were reduced, even with bad side effects.  Once he even let me get chemo when my counts were really low--the nurse had to go ask him if the orders were correct!  But he knew my counts always bounced back quickly when I had a neupogen shot, so he wasn't worried! I think it made a difference that my onc knew me well enough to know that I really wanted to complete all the treatments.  If I had said it was too hard and I wanted to back off a bit he probably would have, as I think he would have respected my wishes.  Same thing with radiation.  That was even more difficult, and I was told I didn't need to finish, but it was important to me to finish those last 3, and I did!  Although, I have to say, I never realized all the side effects I would have to live with!
Sometimes I have a hard time remembering how awful it all was, and other times I remember too well! I get frustrated dealing with painful side effects, but mostly, I am just so glad to be living life, cancer free.  I am enjoying my children and grandchildren.  My girls are such a blessing to me!  They really stepped up and did everything they could to help me get through those tough days of cancer treatment. I'm sure it was hard to watch their mom get cancer TWICE.  They are amazing young women!
Enough reminiscing...my 6 month CT scans are coming up next Monday, Feb. 18th.  I'll also get my labs done that day too.  Then the following week I see my oncologist and have a mammogram.  This coming Thurs. (the 14th) I'll see my colorectal surgeon about the fistula, and I'm thinking I'll have to have surgery on that soon. That is a side effect from surgery and radiation.  :(   
1 more year and I'll hit that 5 year mark!  I'm going to ask Dr. J about being 'cured'; if that still fits my case or not.  I don't remember if the breast cancer will ever be considered cured--maybe because I was  only stage 2b, I can be cured of that too.  I'm not sure--I hope I remember to ask! April 1st will be 3 years from the breast cancer diagnosis.
Life goes on, and God is good! :)
Love,
Tina

There's a Name For It!

Since this blog is still primarily about my health and cancer issues, I'm going to share some personal things with you. I won't get into too much detail though...
I saw my doctor about a week and a half ago, after having a lot of pain and missing a day of work so I could rest and take some Percocet.  She and I both thought I had a fistula (not going to describe that here, other than to say it's a major pain in the bum!).  I was supposed to see my surgeon, but he referred me to a colon-rectal surgeon. I was able to get in this past Thurs., due to a cancellation.  I'm so glad I was able to get in to see an expert in my issues! Good news was, there is no fistula. There are some other minor problems that could be fixed with surgery, but since I had radiation there is a risk that the area wouldn't heal.  Surgery of a radiated area is always risky due to the damage done to the skin. So no surgery!  I'm so glad!
I started telling her (the surgeon) of some of my problems and pain, and she said my surgeon must've mentioned these things to me, and I said, no, he didn't! She told me my problems are very common for my type of colon resection (low anterior resection), so common in fact, that there is a syndrome named for them--Low Anterior Resection Syndrome!  We talked about how my colon now functions, and she gave me some tips and ideas on how to improve things.  It's mostly trial and error, as each person is different.  I can't tell you how nice it was to talk to someone openly and have them understand exactly what I was saying!  I hope some of the things we talked about will work.  Problem is that it takes time to figure out what works and what doesn't.
I had a pretty good week and a half or so, but the pain came back full force today.  I couldn't wait to get home from work today and take a pain pill!  I feel much better now, and hopefully tomorrow won't be so bad.
Other news-- This past week I had Wed., Thurs. and Friday off of work.  Wed. I stayed home and did some MUCH needed cleaning.  Thurs. I ran some errands, saw the surgeon, and packed for the weekend.  Friday morning Rich and I left for Kansas City, MO.  We went to visit Shonna.  I haven't seen her since early Aug. and that's way too long! 
Friday night we had a late dinner with her, then we spent all of Saturday together.  We visited a couple of Jesse James historical sites.  We love that stuff!  Shonna has loved museums and history stuff since she was about 3 or 4.  After supper on Sat. she came to our hotel and we sat in the hot tub and then hung out in our room for a bit--a lovely evening!  Sunday we took her and one of her roomies to brunch, then Rich and I headed home.  We could have spent more time there, but Shonna has very little time during the week to visit. Rich and I both had to get back to work today (Monday).
Rachel and Alyssa were also gone this weekend.  Rachel and her 2 boys went to Alabama with another mom and her 3 kids to visit some other families that adopted from the same orphanage.  Sort of a little reunion!  But what a long drive!  All survived though, and they had a good time!
Alyssa flew to AZ to visit her best friend that recently moved there.  Alyssa HATES flying, but she did it by herself---tells you how much her friend means to her!  She flew once before by herself to see Jaren before he went to Iraq.  I think she's very brave!!  I got to see her today and got to here all about her trip.  Tomorrow Rachel is coming over with the boys and I'll hear all about their trip.  It'll be so nice to see them all!
Life has been busy, and good (mostly!).  I really wish I could take a break from cancer though.  I think it's really starting to sink in that this is my life now, and cancer will always be a part of it.  I sort of knew that before, but now I'm living that reality!  I can't complain too much though--I'm still here and there is no sign of any cancer in my body!  There are too many people I know that have had their cancer spread, or return.  They are always in my prayers!
Well, that's my update for now.  I'll try and update soon with some pictures of the boys--I know they are the real reason you are here!  ;D
Love and blessings!!
Tina