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

Cancer: The Gift That Keeps On Giving

The title of my blog is something you hear frequently in the cancer world.  It's not very often a person who has had cancer doesn't have some lingering side effects, either physical or psychological, or both.  I have been dealing with some painful side effects lately.  2 years ago I finished radiation for my colon cancer, and I am still suffering from the damage that caused.  It's not something I can talk about in too much detail, because it's just too personal, but I'll just say that some pretty tender tissues are fried!  And having 18" of colon removed causes some changes in the gastro system that contribute to the problem also.  I complain to my dear husband, and today I gave my nurse an earful!  I had to go in to get my port flushed, and my usual nurse, whom I adore, was there.  She started asking how I was doing and I said fine, except....then I told her everything, in detail.  It was SO NICE to be able to tell someone what's been going on with me.  And really, I wouldn't have told her so much, except, being the great nurse she is, she kept asking questions, and of course she will fill my oncologist in on everything too.  I told her I may be needing some more Percocet soon, as my bottle is a year old, so it's good that she will be filling the doc in on everything.  That way when I come asking for more drugs, he'll know why. :)  Percocet not only stops the pain, but it also slows down my system, which is helpful.
My shoulder has been hurting more lately, and that all started after my mastectomy.  I thought it was all better, but it started hurting again mid August.  Sometimes if I hold my arm a certain way for a while, when I move it, I get really sharps pains.  Like it gets stuck and it takes a bit for it to move without hurting again.  The pain is right in front of my shoulder socket--kind of a weird place.  Then the last few days it's started hurting up by the clavicle.  That is a spot that was hit by radiation, so that concerns me a little bit.  If either of these continue, I will go see my primary physician.
Then there is the ever present neuropathy.  There was an article recently about a study done on Oxaliplatin, which is the chemo that causes the most trouble with neuropathy.  It showed that in many cases, the neuropathy got worse for a few months after chemo, and is sometimes permanent.  They are finding that it is worse than they thought.  My neuropathy really is just a minor nuisance though.  I'm so thankful it isn't painful like some people's.
Who knew that cancer keeps giving and giving?  Sort of like the song that never ends...except this is the disease that never ends!
Ok, after all that negative stuff I just want to say that life is really good right now, and I count my many blessings everyday!  God is good, I'm alive, my cancer has not spread, my family is wonderful, and I have the 2 cutest grandsons ever!
Speaking of the boys, Charlie is healing really well from surgery.  Brennan is very happy to have his family all back together and at home!  He missed his brother! He gave him lots of hugs, and played with him a lot those first few days at home.    Charlie will be resuming physical, occupational and speech therapy 2 days a week next week, and starting preschool in 2 weeks!
May God bless you all!
Tina

Awesome Charlie

Charlie had his heart surgery last Friday (9/16).  We were all very worried about his recovery--even his surgeon and doctors thought it was going to be a rough few days after the surgery.  They kept watching and waiting for things to get worse--but they never did!  5 days later, on Wed., he got to go home!  His blood pressure, lung pressure, everything---all ok!  It's a miracle, plain and simple.  Thank you so much for all your prayers!  God has plans for this sweet little boy.  He has very few restrictions--just can't pick him up under his arms, and of course, nothing should hit him in the chest.
Brennan went to a daycare for a few days, and I picked him up at 2:30.  He really liked it there.  He wore a little Elmo backpack--SO CUTE!  And Rachel even packed a lunch for him.  Just like a big boy.  He turns 2 on Monday!
He is such a good little boy.  But he really had enough of Grandma and just wanted to be home with his mommy, daddy and Charlie!  I felt so bad for him.  I took him down to the hospital one day and he was happy to see Charlie.  When Rachel and I took him out of the room he kept signing "Charlie" and just wanted to go back and see him.  Brennan has been very happy to have his brother home!
Check out Rachel's blog for more info on Charlie.  The link to "Love is Sugar Free" is on the right side of my blog.


Here's a picture of Charlie in the hospital on Tues., after he was moved out of ICU:

Here is B with his back pack:

That's all for now!
Blessings!
Tina

Back To Work, Back To Life, and a Charlie update

Work has been going really well! I work in kindergarten and first grade in the morning, then supervise lunch and recess. I was VERY tired and achy the first week, but that is getting a little better each day (and it helps to take ibuprofen every morning!).  I still am tired, but am able to at least function after work and make supper.  I even got groceries after work yesterday!  Last week I pretty much came home and collapsed!  Who knew 3 hours could be so tiring!  I am on my feet the whole time and an hour of it is running around the playground doing recess.  I'm so glad the weather is cooler--I don't like being outside when it's hot!
Today Alyssa came over shortly after I got home, then Rachel brought the boys over for us to watch (I'm SO thankful Alyssa was here for that!), then Jaren stopped by, and Rich came home, and Rachel came back, then, finally, Dee stopped by (she saw everyone's cars here!).  Whew!  Was crazy here for awhile!  But I love it!  They all cleared out by about 6:15, and now Rich and I are taking it easy.  Just need some quiet time for a bit!
I noticed, while trying to peel the paper off the back of some velcro, that my fingers are more sensitive than I realized.  That is still from the neuropathy.  There is only a slight numbness left, but they hurt when I try to do things like untie knots and such (something I seem to have to do a lot of at school!).  After working with the velcro the tips of my fingers hurt for a couple of hours,  The bottom of me feet often feel numb when I'm walking around the playground.  Being on my feet seems to aggravate the neuropathy there.  But it's not painful, so I will just ignore it.  I wore tennis shoes today for the first time (I've been wearing flip-flops and sandals), and my toes did not like being inside shoes! Again, there was more numbness.  My feet will just have to get used to it! Too bad I can't wear my slippers to work. :)
I had a lot of other radiation-caused pain this weekend, that I took some pain pills for.  Radiation damage is nasty, and something I'll just have to put up with.  Thankfully the pain eventually goes away and stays away for a few weeks.
Monday night Rich and I got to watch Jaren get sworn in as a police officer.  We are very proud of him!  He and Alyssa have been together since they were in 10th grade.  It's been a blessing to watch them grow and mature together.
I just "skyped" with Shonna!  She had to get new tires today, so I wanted to check in and see how it went.  It's so great to be able to actually see her while we talk.  I still miss her a lot!  Rich and I will be going down to see her in Oct. when I have a break from work.
Well, now for the big news.  Charlie is having his heart surgery this Friday.  At least we are praying they will finally be able to go through with it and fix his heart!  I was so glad I got to snuggle with him and hold him today.  Most of my focus will be on Brennan while Charlie is in the hospital, so I just held him and prayed for him, and kissed and hugged him!  Brennan will be at his other grandparents' house for 2 nights, then come here Sat.  We'll have him a lot the next week.  Please keep Charlie in your prayers.  He will be very critical the first few days, as they will be leaving his chest open. Rachel and Ken need your prayers too--lots of stress and very little sleep for them! It will be good to finally get this done, so that wonderful little boy can get on with living and growing and learning!
Life is really good for me right now.  As I was standing out in the yard with my dog this morning I was thinking about what I felt like 2 years ago.  I couldn't even get out of bed some days to take the dog out, and if I did it took all my energy and I was in a fog.  1 year ago the chemo wasn't quite as bad, but I was taking Percocet for the pain it caused and still tired and weak.  What a blessing to be able to stand out there today with my face to the sun, enjoying the beauty all around me!  Such a difference.  I pray I am done with cancer forever, but for sure I am done with cancer RIGHT NOW, so I am just going to enjoy every day I have.  No one knows when their time is up, cancer or not.  So get out there---ENJOY EVERY MOMENT GOD GIVES YOU!!
Blessings to you all!
Tina

My Grandsons

Today was supposed to be Charlie's surgery day.  He was finally going to get that hole in his heart fixed.  Rachel had everything ready for the week, Brennan's schedule worked out, and Ken took the week off.  They took Charlie into surgery at 8:30 am, and a little while later the surgeon came out.  Not a good sign!  Charlie's fever went back up to 102.2.  He has had fevers off and on all summer.  They have done zillions of tests and can't find the reason.  So, now they do a bunch more tests and cultures and see if they are missing anything.  He is still intubated and sedated, and they should let him wake up in about an hour or so.  Rachel and Ken are waiting for the test results and will talk to the specialists and decide what to do.  You can read more details here: Love is Sugar Free.
In other news about Charlie, he is doing so well in so many ways!  He knows several signs (sign language), and says a few words.  He has been having physical, occupational, and speech therapy twice a week and they are getting him to use his legs!  At first he wouldn't even put his feet on the ground, and now he can use his legs to support himself!  He is happy and loves to snuggle. Now if only we could get his heart healed...
Brennan will be 2 on Sept. 26th!  He knows most of his colors and the signs for them!  He is talking a lot more, although he is hard to understand unless you know the context.  But he will try to say most everything now.  He even makes up signs for things too!  He says things like "mommy's car gold" and "Sissa's(Alyssa's) car".  He recognized Alyssa's car after just seeing it one time before!  He is a sweet, fun little boy.  Of course he has the occasional melt down--but they don't last very long.
I am getting excited about going back to work (although this surgery stuff is putting a damper on that now).  I start next Tues, Sept. 6th.  I even did a little clothes shopping--it's been awhile since I've needed clothes for work!  I wish I could say that I've lost all the weight I gained this last year, but I haven't.  I'm working on it though!  I'm feeling pretty good, and getting my strength and stamina back!
Please keep Charlie in your prayers.  God is hearing those prayers, I know.  I'm sure there is a good reason the surgery was cancelled, because God was there with Charlie and the surgeons.
Love and blessings!
Tina

Scans, Labs, Oncologist, and Last Herceptin!

Well, I'm done!  I couldn't be more excited (well, I could be if I weren't tired from the Herceptin!).  I had my ct scans (chest, abdomen, and pelvis) and bloodwork done last week. Scans are all clear, and bloodwork is good.  One of the liver tests (alkaline phosphatase) was elevated, but I think that is from a minor bladder issue I have had since my colon resection.  We'll check it again in 3 months. 
Today I saw my oncologist and had my LAST Herceptin infusion.  I asked my onc., Dr. J, if I can call my self NED (No Evidence of Disease) now and he said yes, both cancers are in remission.  He said I was actually NED when I had surgery, because there was no evidence of the cancer after that.  I said I wanted to wait until I was done with everything before saying that.  It's not too exciting to be NED when you still have to go through chemo and radiation!
When my nurse called me back to the infusion room she had a big smile, and several other nurses congratulated me.  Unfortunately my 2 regular nurses weren't there, and one will probably be on maternity leave when I go back.  But it was nice that everyone was so happy for me. They know what a long road it has been!
In 6 weeks I'll go back to get my port flushed, then 6 weeks after that (3 months from now) I'll have labs done and see the oncologist again.  6 months from now I'll have more ct scans, labs, and see the onc. again.  I only need a mammogram and MRI once a year, so that won't be until next April.  Mammo and MRI are for the breast cancer; the ct scans are for the colon cancer.
Well, that is the cancer update!!  In other news, we moved Shonna back to KCMO a week ago.  She moved into a different house, so we had to paint and move furniture.  I MISS HER!  It was so nice having her here for a few months over the summer.  Now I have to get used to her being gone all over again.  I want to go visit her in October when my school will be on break.
Yes, I am going back to work, finally!  School starts Sept. 6th. Yikes!  Just a few weeks away!  I am looking forward to it.  I think I am really ready to get on with life.  Took me awhile!  I have enjoyed being home, but it's time to get back to working.  I'm only working 3 hours a day, though.  I wanted to be able to help Rachel out with Brennan and Charlie as much as possible. 
Charlie's surgery date is set for Aug. 30th. They will close the hole in his heart at that time.  It is a risky surgery, but it's necessary.  Until the surgery he will be getting worse because more fluid will be building up.  He'll be short of breath, and get worn out easily.  Even eating will be hard work for him.  He takes Lasix to reduce the fluid in his body, but they don't want to increase that before surgery.  So please pray for his comfort, a successful surgery, and a quick recovery.  Remember Rachel and Ken in your prayers too!  This will be a stressful time for them as well!
Alyssa and Jaren are doing well!  Cheerleading is in full swing, so that keeps Alyssa busy (she's coach), along with her part time job at Noodles and Co.  They like her so much there they want to make her shift manager already.  Jaren will start next week as a part time police officer in our local police dept.  He'll be fulltime in Nov. when he is done with school and gets sworn in.  They recently got baptised together in a nearby lake!  I'm so proud of them both!
Well, Brennan will be here soon, so I better get off the computer!  Charlie has physical, occupational, and speech therapy twice a week, so I watch Brennan during that time.  Tomorrow C has a ct scan, so B will be here early, and spend most of the day here.  I think I get Thurs. and Fri. off!!  I'll have to plan a lunch or something!
Blessings to all!!
Tina

Best Birthday Ever!

My past two birthdays weren't much fun at all.  Two years ago I was in a lot of pain from radiation for the colon cancer, and that summer I spent a few weeks in the hospital.  I remember the awful pain that my inflamed and irritated intestines caused!  You can read what I wrote here.
Last summer, I was getting a harsh chemo combo for a second cancer, unrelated to the first.  I was sick and so tired I could hardly get out of bed.  You can read what I wrote that day here. (Re-reading that just brought tears to my eyes!  I can remember exactly how awful I felt.)
In that last post I wrote that I told my family we were going to make up for my 2 missed birthdays this year--by going to Duluth!  And we did just that!  We had so much fun!  We stayed just 2 nights, but we made lots of memories.  Rachel, her husband and 2 sons, Alyssa, and her hubby, and Shonna were all there.  It was so much fun to see my grandsons experience the waves of Lake Superior for the first time!  We also went to the Zoo and Enger Tower, and spent time just hanging out in Canal Park.  I was tired, sore and sunburned, but oh, so happy! 

Duluth is such a special place for us:  Rich and I went there on our honeymoon (nearly 27 years ago!); Rachel and Ken were married there (at Enger Tower); Jaren proposed to Alyssa there (again at Enger Tower!).  Shonna once said she wanted to get married at Enger Tower, but says her sister stole that idea! :) (Enger Tower is a stone tower that has about 5 stories.  It is in a park above the city of Duluth and the views of the city and lake are amazing!  There are gardens and a gazebo there too.)
Tomorrow I have another Herceptin infusion.  After this I'll only have one left!  Aug. 15th is my last one!  The week before I will have my ct scan and labs done, then I'll see my onc. on the 15th before my infusion.  So close!
We'll be moving Shonna back to Kansas City, Mo around the 6th of Aug.  She is moving into a house that is owned my a woman who rents out rooms to girls at IHOPU.  She'll have her own bedroom and bath, and use of the rest of the kitchen and living areas of the house.  Somehow we have to get her twin bed down there--not sure how yet!  It might fit in the van--Rich has to measure it.  I'm not looking forward to having her leave again, although I do enjoy watching her be a responsible young adult!
God has been so amazing to me and blessed me with so much.  I am continuing to learn so much about Him, and myself.  I've got a lot left to learn--but thankfully God has an endless supply of grace and mercy!
Blessings!!
Tina