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

Neglected Blog!

Well now, I've neglected this blog for over 6 months!  Anyone just stopping by for the first time, make sure you check out the tab at the top labeled "My Journey".  That will give you an overview of my 2 cancers and treatments, and also give you links to take you to the beginning of each cancer diagnosis.
I recently had several tests done and met with my oncologist for my 6 month check up.  I've had CT scans of my chest, abdomen, and pelvis, a brain MRI, lots of labs, a mammogram, and .....I think that's it, although I feel like I'm missing something.  Bottom line---everything looks good!! And yes, I DO have a brain!  ;)
I won't have to have any more CT scans, because I've reached my 5 year anniversary for the colon cancer, which means NO MORE colon cancer!  I will still have a chest MRI for the breast cancer, and see my onc. every 6 months.
My brain MRI was because of some unusual headaches I've been having.  Still don't know what's causing them, but it's not brain cancer (THANK YOU LORD!!!!!).  That is the only test that has really scared me.  I REALLY was afraid that they might find a tumor up there.  I can handle tumors almost anywhere else--just NOT MY BRAIN.
The other thing I've been having issues with is the neuropathy in my feet.  I talked to my primary physician, and she put me on Neurontin (gabepentin).  I only stayed on it 9 days because it made me so groggy. I was supposed to double the dose on day 14, but there was no way I was going to do that.  My onc. wants me to try acupuncture, which surprised me because he's sort of a skeptic about things, but we've both heard many people say they've had improvement with it.  I haven't done it yet...I keep forgetting to call my insurance to see if they cover it.  If that doesn't work, Cymbalta might help. My neuropathy isn't too bad, but the burning feeling on the bottoms of my feet has been getting worse.  It's never terribly painful, just annoying.  It hurts worse when I've been on my feet a lot, or with any extreme temperature.  Too hot or too cold--they both cause that burning feeling.
Stomach/digestive issues are still there, but probably always will be due to the type of  colon resection surgery I had (Low Anterior Resection).  Things are better, but I find the side effects from cancer treatment to be very annoying some days.  I get tired of it and it gets me down sometimes.  I realized a while ago that I am almost always in some kind of pain/discomfort--no wonder I feel blue sometimes!  But don't worry, overall I feel happy and blessed!  Because, hey, I'm alive and cancer free, right??  :)
Well, that's my little update for now.  March is Colorectal Cancer Awareness month, so if you are over 50, and haven't had your colonoscopy, GO GET IT DONE ASAP.  Colorectal cancer can be PREVENTED by getting your screenings done!  If you are younger and have any bowel changes, bleeding, etc. INSIST on getting a colonoscopy.  More and more young people are getting colon and rectal cancer now.  The best way to fight this disease is to catch it early!
Blessings!!
Tina

Past...Present...Future

I recently got an e-mail notification that someone left a comment on my last blog entry...which was in March!  I couldn't believe it had been that long...surely I updated in May or June?  Nope.  So, I'm pretty sure no one will read this, but I thought it was time to do a little update!

Since my last update I've had a DEXA (bone density) scan, MRI, CT scans, labs, and port flushes.  All is well!  My bones show some "pre" osteoporosis, so I need to take calcium (which I keep forgetting to take!).  I'm still eating mostly low-residue, but have the occasional wheat bread, salad, fruits, and veggies.  The trick is to spread them out throughout the week, and not overdo it.  I mostly avoid carrots, cucumbers, and spaghetti sauce, but might have a small amount now and then.
I see my oncologist in 2 days, but not sure what we will talk about since I already have all the results of the tests I did last week!  I'm sure he'll ask about Rich, my grandchildren, and especially my adopted grandson, Charlie. This time I'll have some more family news to share! (More on that later...) I am most interested to find out if I can start going 1 year between scans, and do I really need those labs every 3 months?  I am 4.5 years out from the colon cancer dx, and 3.5 years from the breast cancer dx.  I know my onc. was worried about me, with all that cancer, but I'm doing well now.  And as our insurance covers less and less, we have to pay more and more of the costs of all the tests!
My worst complaint has been fatigue.  I planned to work on that this summer, and talk to my primary care physician (PCP) if things didn't improve.  I think the fatigue has improved a bit.  Last summer, even though I don't work in the summer, I was still tired a lot.  Many days, by mid-afternoon, I was just as tired as if I had worked.  Not good. Then of course during the school year I felt awful.  I worked 4.25 hours, and then came home and could barely function most days.  I was VERY frustrated!  I do know my job is draining, and does sap a lot of my energy (I don't know how anyone lasts for 6.5 hours, much less the teachers who work WAY beyond that!), but I shouldn't feel that bad!  So, this summer, I have been eating a bit better--cutting down on chemicals and processed foods--and exercising more (which I will do when I'm done writing this).  I am eating less, and have lost just a few pounds, but at least I've made the scale go down instead of up for the first time since chemo!  I'm learning what my body can do with and without (my body does NOT like to be hungry).  I started using the 'myfitnesspal' website, which counts calories for you, and helps you figure out how many calories you need each day to lose the amount you want to lose.  It's been helpful for portion control.  So, overall, I feel better.
I start back to work a week from tomorrow!  I REALLY, REALLY hope I feel better this year!  I get done with work at 1:30, which should leave me plenty of time to do other stuff.  Praying I have the energy I need!  As much as I would love to not have to work at all, I do think getting back into a routine is good for me.  I make better use of my time when there is routine.  And I really do like working with the kids!

A little family update:  Rich is doing well at his new job--he's been there about a year and a half.  Pay and benefits are good, and it's just 'normal' work stress, not the stress and low morale of his previous job.  SO BLESSED to be out of that place!  His drive is too long (26 miles one way), and sometimes we worry about lay-offs, but over all it's good.  

Rachel and her husband are doing foster care now, and are in the process of adopting another child! This is a child placed with them soon after they got their license.  He's 2 and has down syndrome also.  He is active, and smart, and lets you know what he thinks about things!  :)  They also have a very sweet little baby girl that we would all love to keep in the family, but it looks like the baby's mom will be able to take her to live with her soon.  Praying God will do what's best for baby, and if she has to go, I hope we'll still be able to see her once in awhile!  Rachel's older 2 boys are doing very well, even with other kids coming and going!  Charlie just turned 6 and will be in kindergarten this year!  He is our super-hero!  Brennan will be 4 soon.  He is as smart as ever, and there is no end to the amusing things he says!  Love those boys!

Alyssa, hubby, and baby girl are doing GREAT.  Selah is 10 months old.  She is really picking up things fast--she always amazes us!  She'll be walking soon, I think.  She is soooo adorable!  We get to watch her often, and she is a smiley, happy little girl!
Our youngest, Shonna, is starting her 2nd year at the U, and she is majoring in journalism.  She has a lot of talent as a writer. She is a junior now, and has 3 semesters left.  She may get a minor also (but I forgot in what! Oops!).  She moved out of my sister's house into an apartment closer to school.  I don't always see her as often as I would like, but we did get to spend some time shopping and antiquing recently, and I enjoyed that!  

We all managed to get to Duluth for a few days this summer. Alyssa, hubby, baby, and Shonna were with us at the beginning, then Shonna's boyfriend joined us, then Alyssa and fam had to leave, and Rachel and her 4 kids joined us the last day!  So we got to spend time with everyone (except Rachel's husband), just not at the same time!  Next year I'm thinking about staying at a resort/lodge/cabin type of place a little farther up, right on Lake Superior. I think it would be better for the kids if we can find a place that has a nice play area and beach.  I'm still thinking about getting away with just my hubby for a night or two up north this fall. We'll see~we might be too busy building a deck!

When I stop to think about where I was this time 4 years ago, I am amazed that I am here, cancer-free, and so blessed.  4 years ago I had just finished radiation, was weak and tired, was being treated for C-diff and giving myself shots for a blood clot, and had endured a very painful summer.  I was healing and gaining my strength back to do 8 more rounds of FOLFOX.  Little did I know the next summer I would be doing another difficult chemo regimen for breast cancer!  That is all behind me now.  These last scans I didn't even have any "scanxiety", except for that brief moment when I saw my oncologist's phone number on my cell phone.  His nurse was calling me to tell me all my tests were good! 

I make a point of remembering what I've been through every now and then, because it helps me to be grateful for every moment I am blessed with. It reminds me of the wonderful ways God showed up for me and helped me through those difficult times.

My future?  It looks fabulous.  Retirement someday with the man I love, doing the things we love and enjoy, being a grandma, and spending time with my children, grandchildren, and foster "grandchildren".  Yep, looks pretty good from here!
Love and blessings!

Tina

PS  Rich and I also went on our first 'real' vacation together in June--we went to Las Vegas!  But that is another story for another day...  ;)

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

A Loooong Overdue Update!

Well, I've been putting off updating, because so much has happened since March (I can't believe it's been that long!) that this could be a REALLY long post.  I'll do my best to shorten all the news, and hopefully update more often!
Let's start with my health~thankfully not much has changed!  I still have the Seton thingy in my fistula, and it's feeling a bit better (although sore now from sitting so long!).  I recently had an ultrasound of the area, but I can't get in to see my surgeon again until Aug 7th to find out the results and what we do next.  Remember, this was caused by the radiation I had for colon cancer, and the radiated skin makes this a bit more tricky. For now, we wait and see what the surgeon says.  She is really good, and I trust her judgement.
In May I had my 3 month check up with my oncologist and had my labs done.  Everything looks good--some things, like hemoglobin and platelets, have improved. I continue to have problems with neuropathy, esp. in my feet, I continue to be tired a lot, and I still have a lot of bowel issues from my Low Anterior Resection.  But I'm happy to be here, and be alive!  My surgery was over 3 years ago--can you believe it?!
In Aug. I'll have labs, CT scans, MRI, and see my onc. again.  I had an MRI and Mammogram in Feb., but he wants to start staggering them and doing one of them every 6 months.  So, I'll have the MRI in Aug., and the mammo  next Feb.  My oncologist is keeping a close eye on me, so if there ever is a recurrence, of either cancer, we'll catch it early!
Ok, on to other news!  In my last post I wrote about Rich going to a job interview that sounded promising--well he got that job!  The pay is BETTER, the people are nice, and the job is interesting, rewarding, and less stressful! The drive is about 24 miles one way (nearly double what he drove before), but it's not so bad.  He leaves early to beat the worst of the rush, and he is trying different routes.  What we thought might be a major trial, was God just answering my many prayers to get Rich a better job!   We have an AMAZING God (and He is amazing whether or not we go through difficult times!). Rich was miserable at the other place the last few years. Life is too short to live like that!
I have not found another job, and am thinking my little part time job at the school is really a blessing.  Although it doesn't bring in much money (enough for a car payment or 2), I get to spend more time with my girls and grandkids.  And those 3.25 hours a day I do work wear me out, so longer hours would be worse!  I still keep my eyes open for a quieter paperwork kind of job though.  That wouldn't wear me out as much as working with kids does.  But then I wouldn't have summers off, would I?
Now for the REALLY GOOD news! Alyssa is pregnant!!  And she is having a GIRL!  I am sooooo excited!  I was really hoping for a girl, because we've got the 2 boys.  Alyssa was hoping for a girl too, because she LOVES pink!  She warned Jaren that there might be 'pink overload'.  He is so good to her.  It makes him happy just to see her so happy about the baby.  Funny thing is, this wasn't planned, and they had actually just talked about putting off having kids for a long time.  God had other plans for them!  They will be great parents, and they will have lots of help!  Baby girl is due Nov. 5th.
Brennan and Charlie are growing like little weeds!  Charlie is walking with a walker, and can walk holding on to furniture.  He is so awesome.  He is happy, giggly, and loves to hug and be held! He'll soon be 5!  Brennan will be 3 the end of Sept.  He is so funny and has a great sense of humor.  Talks and sings all the time.
Alyssa and Jaren bought a house only 4 miles away.  They moved in mid-May.  Rachel and Ken sold their house in just a few days, and bought a house a little farther away.  They are about 25 min. away, instead of 5, but are a little closer to Ken's work.  Rachel is always planning and thinking about the next child they will adopt, but for now, there is work to be done on their new house, and 2 adorable little boys to give lots of attention to!
Shonna did move back home and we are so happy to have her back in MN!  She will be going to the the U of M!  Not the school I ever expected, but it is a lot less expensive than the Christian schools (even with some good scholarships she got!).  She adopted 2 cute bunnies, and they are taking up most of my family room!  But I love rodents, and these 2 are cute and have a lot of personality!  Shonna will eventually be going to live down the street with my sister.
Ok, how did I do?  Not too long I hope! I plan to do a post soon on some of the emotions and issues we cancer survivors can have.  I've experienced a lot of highs and lows lately.  But that's for another day....
May God greatly bless each reader that stops by here...love to all!
Tina

A Little Update

Just a little update...not too much new.
Saturday I had a fever and terrible headache in the evening, and it continued Sunday morning, but by Sun. afternoon I was fine. Weird! The only time I've had a fever so far was when my white blood cell count was low, but since I did a shot on Wed., my counts should be way up. Usually one shot makes my counts go above normal range. Oh well, I was worried about the fever, but now I'm just glad it went away! I have a very busy week and I don't need to be sick anymore!
Last night I couldn't sleep again. I don't know why I'm still having trouble with sleeping. I didn't think about taking an Ambien until about 2am, and then I figured it might be too late. I went out to the recliner like I usually do when I can't sleep, and was still awake at 4 this morning. That's when the first birds start singing. So, I'm a little out of it, being that I only had 4 hours (or less) of sleep! Most nights I sleep fine, but 1 or 2 nights a week I have trouble either falling asleep, or staying asleep.
This coming Friday will be 3 weeks since I've had chemo. Its taking a little longer than expected to get rid of all my side effects, but overall I'm doing good. I still can't hold anything cold for long, but I can eat/drink anything I want, so I'm happy with that!!
Thurs. I see the radiation therapist--I kinda am looking forward to getting started with radiation. I'm nervous, but yet I want to keep battling the cancer, and keep moving toward the finish line! I am grateful, tho, for this break in treatment.
I'm finding that there is alot of strange thoughts that come along with a cancer diagnosis. I'm so glad there are blogs out there of others who have gone through this already. There is fear even in the strongest of survivors; its what we live with every day. It helps me to know that I'm not alone with my thoughts. Now, I don't want people worrying about me. Overall I'm pretty positive-my faith in God helps alot with that. But, if I'm honest in this blog, then there are going to be times where maybe I'm not so positive and happy. I think its important for me to "tell it like it is".
Hope everyone out there is doing well!
Love to all,
Tina