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

The Decision Has Been Made...

After talking with my surgeon and oncologist, I've decided to have a mastectomy. Just the left side, where the cancer is. Both recommended I delay any reconstruction until after chemo. Then I can decide what I want to do. That sounded good to me, because right now I just want to focus on getting rid of this cancer. Having to make reconstruction decisions would have been just too overwhelming right now.
The cancer at the margins of the tissue removed during the lumpectomy is DCIS. The surgeon feels we got all the invasive cancer. But apparently there is more DCIS (non-invasive cancer) than we knew about, and that can eventually become invasive.
I might still have to do radiation. I will have to meet with my radiation doc to discuss that. Studies have shown that if the cancer has spread to 1 lymph node there is no added benefit from radiation. If its in 4 lymph nodes, radiation is necessary. 2-3 lymph nodes is a gray area. But the cancer broke through one of my lymph nodes, which might make radiation more desirable.
The plan is: (I think I went through this all a few days ago, so skip this part if you want) Surgery on Monday, May 24th. 1 or 2 nights in the hospital. And yes I have to have another drain! My surgeon told me just because the first one hurt so bad, doesn't mean the next one will. His nurse said the armpit drains usually hurt the most. I'm just going to try not to think about it!
About 2 -3 weeks after surgery I will see my oncologist and start chemo. Andriamycin and cytoxan every 2 weeks for 4 cycles, so 2 months total. The day after chemo I will get a Neulasta shot. These are like the Neupogen shots I had to do last time, but Neulasta lasts longer. This chemo cocktail is even harder on the bone marrow than my last regimen (FOLFOX), so they don't wait until the white blood cell counts drop, they do the shots right away. One of these drugs is the one will make me lose my hair, and it happens pretty fast.
After 2 months of that I will start another chemo drug, Taxol, and Herceptin. I will first have another MUGA (heart) scan. I will get these 2 drugs weekly for 12 weeks (3months), then stop the Taxol and continue on the Herceptin every 3 weeks for 9 more months, so I will be on Herceptin for a year total. All the drugs I will get through infusion. The Taxol sometimes causes neuropathy, so we'll have to see if my neuropathy that I have from my last treatment starts to go away before that. There is a way the onc. can modify how I get the Taxol that lessens the side effects. This chemo cocktail is called AC+T (I think!).
When I'm finished with Taxol, and while still on Herceptin, I will start the radiation, if needed. That would be daily, Mon-Fri, for 5 to 7 weeks.
K, have I lost you yet? I just wanted to lay it all out there, the way the docs have explained it to me the last 2 days.
The reason I have to have the heart scans is because both the Andriamycin and Herceptin can cause heart problems. The problem usually goes away after stopping the medicine. A bit scary, especially given my family history of heart trouble, but I'll just have to trust God that He will be watching over me!
Oh! I almost forgot...I DO NOT have the breast cancer gene. That is good news. I can beat this and it may NEVER return!
I've been hearing "Do not be afraid" and "Trust Me" a lot lately. Also, I wrote in my notebook the other day "THERE IS A REASON", and I feel that was from God too.
I'm a little, um, freaked out maybe? that I have made the decision to have the mastectomy and put it on the calendar. Other than that, I'm really doing well. Really, I am! Just because I know God is with me, and His will is being done in my life, doesn't mean I'm going to enjoy surgery, or losing my hair. But He is giving me peace, and I know this is what I have to do. So its all good. :)
Blessings!
Tina

Pathology update

Hey everyone! Its actually Tina writing this time!
I wanted to let everyone know the results of the pathology tests, at least as much as I know. The surgeon took 21 lymph nodes total, and of those, only 2 had cancer cells. I consider that to be good news. As far as anyone knows, we may have gotten all the cancer. The problem, of course, is that there is no way to know for sure. Therefore, I'll probably have to have chemo. The only other thing I found out was that my tumor was "moderately differentiated", which apparently means it was not an aggressive tumor.
My surgeon said he will set up an appt. with an oncologist after my post-op appt., which should be 1-2 weeks after I'm released from the hospital. So, I won't actually know what the plan of attack is for a few weeks yet. I just need time to heal and thats all my surgeon wants me to think about for now. I was even told not to diet or place any restrictions on what I eat. Just listen to my body and eat whatever I think it needs. The only thing I need to make sure I get enough of is protein, because it will help my body heal faster. Too bad chips don't help the body heal faster!
I can eat anything I want, as of today, but am still sticking to soft-solids. I still have some nausea after eating because my "plumbing" is not all working quite as it should be, but its getting there. I'm getting 3 small meals and 3 snacks today.
I might be able to come home tomorrow, if my nausea goes away. They took me off the big drugs today and changed me to Percoset. I was very nervous to be disconnected from my pain killer, but the percoset works fine! I definitely can tell when its time for my next dose tho!
I have no more IVs at all now. I didn't know what to do with my hands when I went for my first walk without my "Sammy" pole. (I had to name it--we had a pretty intimate relationship!) Now on to a more "delicate" subject: Wed. they took my catheter (Foley) out, but had to put it back in. I was SOOOO disappointed!! It was depressing. But a urologist stopped by and explained that it is common to have this problem with the type of surgery I had. I'll have to bring it home with me, and then go to the clinic sometime next week to have it removed again. I write about this personal stuff in case there is someone else out there going thru the same thing I am, and maybe they'll feel little better knowing they are not alone. If any of you have had experiences with caths at home, be sure to let me know!
I have enjoyed reading everyone's comments, emails and cards. Thanks so much!!!
Love and blessings!
Tina