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

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...  ;)

The New Plan

The new plan is to finish the radiation (12 more after today) which will end on Wed., Aug. 12th. The week of Aug. 10th I'll get an injection of 5FU each day, Monday-Friday. This is an alternate way to get the 5FU, and will work just as well. The Dr. was explaining to his "Fellow" (doc-in-training) how he's not worried about it affecting my blood counts because I responded so rapidly to the Neupagen shots (which raise my wbc). He told him all about how I was in so much pain within 2 hours of getting the shot, and how they hadn't seen that before--glad I could be of help in the "fellow's" training! That's me --the "oddball"! :-)

After radiation is done it sounds like they'll give me a 2 week break and then we'll start the rounds of chemo--every other week for 4 months--with the FOLFOX cocktail that I had before. This should work out perfectly for Rachel's baby shower the end of Aug. I am always amazed at how God is working in all this and making sure I'm not too sick for any family events. I can't wait to see how God works it out with Rachel's baby coming in Nov. By then I should be pretty sick, but I need to be able to hold my grandbaby as soon as I can! So, I'll trust God, and not worry about it!

I am feeling pretty good. I took my last pain pill this morning--don't need them anymore, as the intestines have calmed down. Still don't have much of an appetite. Pink Lemonade has been the drink of choice lately--I'm getting tired of plain water, but need to keep the fluids up. I need to get more protein, tho. That's a bit harder to do, as nothing tastes very good, especially meats. I also need to start taking more iron pills--my hemoglobin is still around 9.1. It never seems to go up much. My ankles are swollen, but the docs say it'll just take time to reabsorb all the fluids I got during my hospital stay, and the blood clot in my pelvic area is making the one ankle worse. I had to go to the hospital on Friday to get an ultrasound of my right leg because that ankle was really swollen, but the other one wasn't. Thought I was going to miss my birthday dinner! Dr. J. came out and said I must have missed him, and came all the way down just to see him. He's so nice, and funny. Aways happy and positive.

I feel good about getting on with my treatments. I need to keep fighting this. As sick as I get, at least I'm DOING something about it. I want to live a long life and see all my babies have babies of their own, and I hope I can find ways to help others going through this. Please pass on my blog address to anyone you know that has been recently diagnosed with cancer--often reading about what others have gone thru helps. I know it helped me, and the support of other bloggers continues to give me strength.

Love and blessings to all!
Tina

My Meeting With the Oncologist

Here it is folks...I'll try not to get too long winded!
I'll start off by saying that I like my doctor( Dr. Jahagirdar), and all the folks at the Regions Cancer Care Center seemed really nice! The treatment is pretty much the same treatment I've read about on the blogs of those who recently have gone thru this, so there was nothing new or out of the ordinary. I will have to have radiation also, due to the location of the tumor.
So this is what's going to happen: My chemo will start on Wed., April 8th. I wanted a Wed. so I have the weekend to recover before going back to work. I'll get chemo every other week, for 3 days. The first day of chemo I'll go to Regions and I'll have blood drawn (too make sure everything is ok before they start chemo), meet with the oncologist, get some fluids and IV drugs to help with side effects, and then I'll start the chemo. The whole process takes about 4 hours. I'll come home with a pump (like a fanny pack) that'll continuously give me 1 of the chemo drugs for 46 hours. On the 3rd day (Friday) either a nurse will come to the house to disconnect the pump, or I'll go to Regions to get it disconnected.
After 4 rounds of this (2 months) I'll start radiation for about 5 weeks. During radiation I'll only be getting 1 of the chemo drugs. Radiation doesn't sound like much fun! My bladder and bowels will be irritated and will feel like I have to "go" frequently. Great, just what I need. And there could be permanent damage to the bowels. Hopefully this is rare! I meet with the radiologist next week, so I'll find out more about all of this.
After radiation I'll restart the chemo process for 8 more rounds. The whole chemo/radiation process should take about 7-8 months.
The drug "cocktail" I'll be getting is called Folfox. This is a combo of 3 drugs--5FU, leucovorin, and oxaliplatin. Common side effects are diarrhea, mouth sores, nausea and vomiting, fatigue, decreased blood counts, sensitivity to cold, and tingling, burning and numbess in hands and feet. I was happy to hear hair loss is less common, and if it happens its usually thinning, not total loss. Shonna and her friends apparently talked about buying me colorful scarves, but I may not need them. Thanks anyways for thinking about me!!
The doc said they have drugs that greatly reduce the nausea, and he didn't think the side effects with this regimen were all that bad. We'll see! I have a chemo class next week, and I'll find out more then. I've read about the cold sensitivity and its really extreme. It hurts to drink anything cold (1 guy said it felt like swallowing shards of glass), you can't touch anything cold (have to use gloves to get things out of the freezer), and it even hurts to breath in cold air (like the refrigerated section of the store).
Next Monday I get the Port-A-Cath put in. This is a port that will go under my skin in the front shoulder area and stay there until I'm done with chemo. This is how they draw blood and give the chemo drugs. I think I'll have an IV also the first day of each cycle.
Next Thurs. I meet with the radiologist and have my chemo class.
The following Tues. I meet with a genetic counselor. Dr. J wants to do genetic testing on my tumor. It may tell me whether or not this runs in the family, or am I just an oddball. :-P
Then I'm back to work the Thurs. after that (April 2nd). So much for getting lots of rest!
So, this morning I woke up saying to myself over and over "This is really gonna suck". Then I read some e-mails and messages I've gotten, and that lifted my spirits. If I look at it as only being 8 months out of my life, then that doesn't seem so bad. By this time next year I should be cancer free, and getting ready for my daughter's May wedding! Oh my, there will be a June graduation too! My baby will be done with high school!! My family is my life, and they are what's going to get me thru this.
I thank God that He is with me thru all this, carrying me when the going gets tough. And I thank Him that I have such a wonderful husband, daughters, family and friends. Please continue to pray for me, and I am asking God to heap blessings on each and everyone of you!
Love ya all!
Tina
ps this was enough info for one day...if I think of anything else I'll write it tomorrow. If you have any questions post a comment or e-mail me and I'll be happy to try and answer!