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

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

Gotta Love That Daughter of Mine!

Apparently, when Rachel was over here using my computer the other day, she decided to make a blog post for me!  It took me a few days to figure it out!  Some things never change :)
Well, yes, I am still alive!  It's been awhile since I've posted!  I have been busy with my grandsons, Shonna, my messy house, etc. 
Shonna is home for the summer, well, at least until the beg. of Aug.  Then she will go back to KC for another year of school at the International House of Prayer (IHOPU).  Today she sang on the worship team at church.  It's been awhile since she's been able to do that; it was good to see her back up on the stage.
The boys are doing great!  Charlie is gaining weight and is learning things fast!  Brennan is still a good little brother, but sometimes he gets a little tired of Charlie!  I still watch B often because C has had a lot of dr. appointments.  It'll be awhile before Charlie has any surgery though, there are other things they need to work on first. You can check out Rachel's blog (Love is Sugar Free) for more info on the boys. (Link is over there
---->)
I don't think about cancer much anymore. I do still get annoyed at the side effects I'm left with though.  I went over all the side effects in one of my last blogs. I think I forgot to add my sore shoulder though.  It has been stiff and sore since my mastectomy last May.  It got worse for awhile, but now it's slightly better.   It didn't hurt as bad when I had to lay it above my head for my last MUGA scan.  I was always going to get physical therapy for it, but I just haven't.  I think I'm just tired of medical appointments!  I still need to see the dentist too!  It's been over a year.  I see my primary doc on Thurs. to go over some things and get some blood tests.  Just routine stuff.  I haven't seen her in a long time.
I saw my oncologist the last time I was in for my Herceptin infusion.  My MUGA showed my heart is still doing good on the blood pressure med I am on.  I take the med not for high blood pressure, but because my heart function was decreasing from the Herceptin.  My onc was pleased with how well I was doing.  I will see him again when I have my last Herceptin in Aug.  I'll have another MUGA , ct scan, and bloodwork a few days before I see him.  Oh--speaking of bloodwork--my hemoglobin is finally back in the normal range!  The fist time since last April!  Everything else looked pretty good too--a few things out of whack yet, but nothing serious. 
It's been a year since my mastectomy--May 24th, 2010.  What a traumatic time that was!  I wish I could say that I'm used to it and it doesn't bother me anymore, but that's not entirely true.  It's, like my side effects, an annoyance.  I'm trying to find a good swimsuit now.  Insurance pays for bras and prosthetics, but not swimsuits, so it'll be expensive.  I just want one so I can go in the hot tub when we go to Duluth.   I did find some online, just haven't ordered yet. 
I have been seriously considering reconstruction, but that is a major surgery and I'm not sure I want to put myself through that. I will lose use of muscle, and the recovery is long.  I've put off any thought of that until next year.  If I decide I want recon, I can do it anytime I want, and insurance will pay for it.
When I went to see my onc I wanted him to say that I am "NED" (No Evidence of Disease).  I told the nurse that and I started choking up a bit.  She left the room and I started crying a bit--I had no idea I would be emotional about it!  Thankfully the doc took a while to come in and see me and I got myself under control, but I didn't want to bring it up and start crying!  So I didn't hear him say it, but since all my tests and scans have come back clear I am going to say I'm NED!!!
Time for bed!
May God bless each of you this week!
Tina

A Lopsided Life

I've had a lot of ups and downs the past few days.  Sometimes I really regret my decision to have the mastectomy, and think I've made a HUGE mistake.  Usually, after I've thought it through, I remember the reasons I made the decision, and I'm ok with it.  Usually.  Yesterday I talked with the nurse navigator (Barb) at the Breast Health Center about the pathology results.  The main reason I chose the mx (mastectomy) was because there was more invasive cancer and DCIS than what showed up on the mammo or MRI, and I didn't know if there was more floating around in my breast.  The fact that it was an aggressive cancer (HER2+++),and had already spread to 3 lymph nodes, made me not want to take the chance that a re-excision would miss some. Anyway--back to Barb.  At first she said the path report showed only DCIS, and I asked her if it said somewhere how much was found.  She was reading it and trying to figure it out, and said that maybe they didn't find anymore.  She said that Dr. Morris would have to read it and answer that question for me.  I see him on Tues. morning for post-op follow-up and drain removal.  Dr. Morris told me that we might not find any more cancer.  There was DCIS at 3 of the margins of the lumpectomy, but that might be as far as it went.  He said that would be a good outcome.  Secretly, I didn't think so!  So when Barb told me there might not have been any more cancer, I just lost it (after I politely thanked her and hung up the phone!).  I went in my room and had a good cry.  All I could think at the time was I made a huge mistake and I want it (meaning my breast) back!  I was a little depressed the rest of day.  It was just this morning that I finally remembered why I had the surgery done (see above).  I wish there was some way I could have known for sure that there was no more cancer, but there just wasn't.  With all the tests they can do these days, there still isn't one that can always see 100% of the cancer.  I hope sometime soon I'll be more at peace with my decision.  We'll see what Dr. Morris has to say on Tuesday.
Yesterday I asked my sister to run to a store and buy me a sport bra.  There is a light shelf bra in the cami I got from the hospital, but it offers no support for my right breast.  I tried to match it with the soft breast form on the left side, but couldn't get it to stay down far enough--so I had one up high "breast", and one headed toward the ground! lol!  I couldn't leave the house until I could find a way to match them better.  Dee brought me several bras and camis to try.  Only 1 fit and offered some support.  I wore it today.  Not very comfy, cuz its a little tight and pressed the breast form against my chest (luckily its mostly numb!), but it worked for a while.  While at Target today I bought a few soft, wireless bras, and I'll try them on later.  Yes, this would all be easier if I had a bilateral (double) mx, but loosing both would have been WAY to difficult to do at one time.  Maybe I'll be ready for that next year.
I'm healing up nicely, I think.  I haven't had any pain meds since Thur. am.  In the afternoon I was feeling a little nauseous, and really foggy brained.  I think it was a build-up of too many pain drugs since the surgery.  I felt much better the next morning.  All I take now is the occasional ibuprofen.  Most of the area is numb, but I get occasional sharp pains.  My drain doesn't bother me too much, and there is not as much coming out as the last one I had.  I am hoping I can get it removed on Tues., as planned.  And I'm praying it doesn't hurt as much!
It was nice to get out of the house today!  I put on a little make-up, did my hair, and spent a little money--all good things!  :)  Rich is so funny at Target.  If we go anywhere near the baby clothes, he goes right in and looks at stuff for Brennan.  We don't always buy something, but he likes to look.  He can't wait to buy Brennan his first little pair of "work" boots.  Today we ended up buying a little shorts outfit.
We came home and took a nap!  Rich is getting ready now to mow and weed-whip and such.  I might help pick up sticks a little bit. My main job when Rich mows is to bring him a glass of water about halfway through.  I think I can handle that! I'm going to make tacos for supper, then I might make him some cookies. Not from scratch.  He likes choc. chip cookies ALOT, so we buy the ready made dough.  Once in awhile I'll make homemade ones.  Shonna makes yummy ones with oatmeal. 
Well, Rich is already mowing--guess he's not going to pick up sticks first.  Maybe I'll go sit on the deck for a bit.
Blessings!
Tina

Trying to be a Mudder

I think I am doing well, all things considered.  I am still taking pain meds, and they are keeping the pain under control.  There is more pain this time than there was after my lumpectomy.  Its a larger area of my chest that was affected.  Most people don't realize that the breast tissue goes up near the collarbone. I have a big dip in my chest near there where tissue was removed.  The surgeon left some tissue behind, to help with reconstruction, so the area looks a little worse--not the nice neat scar some would expect.  If I choose not to have reconstruction, I will have the extra stuff removed.
Emotionally I am doing well too, at least so far.  There is a lot to deal with right now, but I'm not overwhelmed or upset.  I'm really taking it easy and giving myself time to get used to all of this.  I have a lot to do the next few weeks, but for a few days I'm just relaxing.  Today I plan on keeping my mind on some Bible verses, and just keep God in my thoughts as I go about my day. 
You may have noticed I've been playing with my blog a little.  I've added labels and some tabs at the top.  Hopefully this will make it easier to navigate the blog.
The former Senior Pastor at our church, Tom Stuart, has a wonderful blog.  There is a link to it on my side bar.  The other day he blogged about "Mudders".  A Mudder is someone who overcomes what life throws at them--like a horse that performs well in muddy, adverse conditions.  Here is a line from Tom's blog about spiritual mudders:" ...if you’re a child of God, born of the Spirit through faith in Jesus Christ, you’ve got “mudder” in your spiritual genes. That makes you more than a conqueror through Him who loves you; and an overcomer in anything life throws at you."  Tom mentioned me in his blog as a spiritual mudder--I was honored to be mentioned there!  I have never felt like an "overcomer". It's not something that comes naturally to me, but it speaks to the power of God, and the miraculous things He can do in a person's life.  Any challenge you are facing, no matter how overwhelming, God can turn you into a "Mudder".  You too can overcome and even CONQUER any troubles you have on this earth.  God is truly amazing and His love for us is deeper and wider than anything we can imagine.  Just talk to Him; He'll reveal Himself to you, and you'll be amazed too!
I'd love to hear from some of you that are reading my blog!  You can comment on my blog, or e-mail me if you want your comments to be private.  If there is ANYTHING I can do to help you or someone else get through a cancer diagnosis and treatment, please let me know.  And, of course, I always welcome insight and advice from others who have been through what I'm going through now!
Thanks for checking in today!
Love and blessings!
Tina

Home From Surgery

I got home about 2 hours ago. Just been catching up with e-mails and on Facebook.
Surgery went just as expected--no surprises this time! I wasn't able to talk with the surgeon today, but saw his residents, who helped him in surgery. The surgeon (Dr. Morris), told Rich yesterday something about leaving behind some of the extra skin that may help with reconstruction. That's cool that he was thinking of that and doing what he could to help. I assume I'll eventually want some sort of reconstruction, but won't make any decisions on that until next year.
I'm not feeling much pain, so might just try one Percocet instead of 2 in a little while. Last night and early this morning I had a lot of pain when the nurse was "stripping" the drainage tube. It was causing suction on the inside. The nurse said sometimes that happens. It didn't hurt when she did it at noon though, but I made sure I had my pain meds first, just in case! Hopefully it won't hurt anymore at all.
Didn't sleep hardly at all last night--maybe an hour or 2, then a little 1/2 hour nap this morning. Most of the nurses and PCAs at Regions are really good, but I had this one PCA last night that left the door open after he checked my vitals at 11 last night. It was very noisy out in the hallway! Finally the nurse came in for something and when she was leaving asked if I wanted the door shut. Then this morning the same guy comes in to restock my towels at 5 am--seriously?!?! That couldn't have waited? And again he left my door open! Sheesh, you wonder sometimes why certain people even want that job. Everyone else there does what they can to make you comfortable and help you sleep.
As I was laying there last night I realized that I'm not afraid of surgery anymore. I was very upset to have this one, but I wasn't afraid of the actual procedure. My first major surgery was my colon resection last year. I was pretty scared! Now that I know what to expect, its not so bad.
Next Tues. I'll go back to see the surgeon for my post-op, and hopefully have the drain removed. Then they will set me up to see the prosthetic fitter, and a physical therapist for my arm/shoulder. Both are there (at Regions Breast Health Center) on Tuesdays, so I should be able to do both in one day. Tomorrow I have to call to make an appointment with Dr. J, my oncologist, and set up a time for chemo class. At that class they will go over all the side effects of the chemos I'll be getting, and they will give me info on getting a wig.
Until I get my prosthesis, I have some cushy pillow like things I can wear inside my cami or bra. I probably won't go anywhere until this weekend, and if I do go out then, I will try to wear a regular bra because the cami offers no support and it too warm to wear layers, like I did after the lumpectomy. This is going to be difficult until I get a mastectomy bra and fake breast! Oh well, if people want to stare, I guess that's their problem and not mine, right?
I'm not so sad anymore, now that its done. Nothing I can do about it now, so may as well get on with life!
Thanks for all the prayers and support! Here is the Bible verse God gave me before surgery (via a daily e-mail devotional):
"Do not be afraid or discouraged. For the Lord your God is with you wherever you go."
Joshua 1:9 (NLT)
That's all I needed to hear! How awesome is that?
Take care everyone!
Tina

Saying Goodbye to the Left One....

Had a very busy weekend! Alyssa and Jaren had their vow renewal ceremony and reception today. It was soooo beautiful! I've been editing pictures and sitting with my feet up for the past few hours. Now its time to pack my bag and get ready for bed. (and can't forget to run the dishwasher!)
Because I've been so busy, I haven't had much time to think about tomorrow. And I really don't want to think about it now. What was it someone recently told me? Think of it not as losing a breast, but losing the cancer. That's what I'm trying to do. I think if I were to think about it too much I would really start crying. I can't even put into words why its so upsetting. It just is. But on a lighter note, I've been able to joke about it at times too. And the hair loss. Should make for some funny stories, eventually.
Well, off to bed now--I have to get up by 6 am! Surgery is at 9am. Thank you to all who will be praying for me tomorrow. I will be thinking of that...
Love and God bless!
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

In a Holding Pattern

I still haven't made my decision yet--mastectomy (single or double), or another lumpectomy. I think I am leaning towards a mastectomy now--that's a BIG change from before. But we'll see.
My oldest brother called me the other day. Wanted to put his 2 cents in. He asked why wouldn't I do everything possible to make sure the cancer is gone and never comes back? Good question. He also shared some experiences others' have had, and that's always helpful. I think part of my problem is that cancer doesn't scare me anymore, but it should! I should be doing everything possible to be around to watch and help my girls become wives, mothers, or whatever God has for them. And watch my grandson become a Godly young man. And, HOPEFULLY, to see MORE grandchildren! And, of course, to grow old with the man I love.
On Tuesday I had a MUGA heart scan and an EKG. These tests are necessary to make sure heart function is good enough to handle the chemo I'll be getting. I'll get them throughout my treatment to make sure the drugs aren't damaging my heart. Those tests showed my heart is good to go!
Tomorrow I have a bone scan, 3 ct scans, and I'll have my drain tube pulled. I can't wait to get rid of it! I'm going to be a baby and take a pain pill before I go. Rich will drive me. Going to be a long day.
Monday I go back to work (guess I'll have to start wearing a bra again!). Tuesday I meet with my surgeon. I have lots of questions about different options for surgery, and reconstruction. Wednesday I meet with my oncologist to go over all my test results and talk about "the plan". I have lots of questions for him too--like what it means, exactly, to be HER2+, and is that +, ++, or +++ (apparently there's a difference). I think HER2 is a more aggressive cancer--should that make a difference in which surgery I should have? Am I at more risk for it to come back, and if it does, will it be aggressive and quick moving? [Shonna loves mama lots. ] Still have not gotten my genetic test results. I left a message for the genetic counselor, but I don't think she'll be back in before Tuesday. I really need to have those results to make my decision.
So, after all my appointments next week, I should be able to make my decision. I won't be having surgery or starting chemo until after May 23rd, so I'm thinking surgery will probably be Monday the 24th, or soon thereafter. I'll get 2 or 3 weeks to recover, then bring on the cancer killing poison!
Well, I see Shonna put her little message in the middle of my blog! Silly girl! I've been distracted by Brennan. So now I've forgotten everything else I was going to say! I guess I'll end here!
Love to all!
Tina

The Decision Weighs Heavily On Me...

Its all I can think about--should I have the mastectomy, or not, and if I do, should I do a bilateral (remove both breasts)?
I've been reading alot on the forums at Breastcancer.org. Pros are: no need for radiation (in my case, anyway); no need for repeated lumpectomies; no worries about cancer returning to that breast. Some women remove the non-cancerous breast also--for cosmetic reasons, (both will be the same size), or prophylactic (sp?) reasons--they don't have to worry about getting cancer in that breast. Although there is a chance (5% I think?) that you can still can breast cancer because there still is a small amount of breast tissue on the chest wall. If reconstruction is done you can end up with perkier breasts!
Cons are: uneven breasts (if only doing one); longer recovery; phantom pains occurring months to years later (post mastectomy pain syndrome); self-image concerns.
I'm sure there are more issues on both sides, but that's all I can think of at the moment.
I'm really struggling with the self image stuff. Of course Rich will still love me, no matter what I do, but men are visual after all. I may end up looking better with clothes on, but reconstructed breasts will never be the same as "real" ones.
And I worry alot about the pains that may happen after, and may last for years. I want to be done with cancer once I've finished treatment, I don't want to suffer for years. OK, knowing what I know about cancer treatment, that shouldn't be a concern. Most treatments DO have lasting effects. My neuropathy could be permanent, and I have "female" issues from radiation that I will have to deal with forever, and don't forget the sensitive, sometimes very painful skin on my bottom, and the list goes on.
I've been struggling with "who am I?" I have the head knowledge of knowing I am loved by my husband, kids, family, and that I am created in God's own image. But I still feel like I am losing myself as a woman. I might be a hairless, boobless, scarred up shell of a woman. Hey, just laying it out there. Actually, just typing all this helps me work through it. And I know it may sound silly to many of you. But these are the things I have to work through.
Right now, I'm going to try to give it a rest. I won't be making the decision until I have the genetic test results, and I talk over ALL my options with the surgeon.
Today I worked in my garden for a little bit. Couldn't do too much with one arm, but I did fill one big bag with leaves and plant debris. Everyone else around here has already cleaned out their gardens, and mine are still full of oak leaves! And the weeds are already taking over! I'm thinking of paying the neighbor boy to clean out the rest and weed for me. Then I want to buy more perennials to plant. I haven't done much with mine and last year they didn't look so good. Time to fill in with some new ones. We'll see if it gets done this year. I guess it depends on how well I handle this chemo. I can't imagine that it could be worse than the Folfox I had before. This stuff is supposed to be easier to tolerate--I've heard that before though! There are people who were able to work through the 12 rounds of Folfox, and I could hardly lift my head off the pillow! And remember my radiation was supposed to be easy? NOT!! If anyone has to have radiation for colon/rectal/anal cancer, have them talk to me FIRST. There are things they need to know!
I think I'm healing well from my surgery. I haven't needed any pain meds the last 2 days. I'm a little sore now, from being so busy today, but its not too bad. I have to wear bulky clothes, or loose shirts so that you can't really tell I'm not wearing a bra, or see my drain. I wear a cami that has a pocket for my drain and a light shelf bra, but anyone my size knows shelf bras are a joke! The drain is a pain(in the rain in Spain[sorry]), but, manageable. I'm scared to have it yanked out tho! Some people say it hurts alot, some not so much. I've heard its a quick pain that only hurts for a moment.
Oh--speaking of "my size"...Rich and I ran into some friends at Walmart and we were talking about mastectomies (seems everyone knows someone who's had one). I said it might be easier to have them both removed, to help even things out. Rich looked at my chest and said in my case I might be walking around leaning to one side if I only have one removed, and then my friend mimicked how I might be walking. Funny guys--ha-ha...but really, it was good to laugh about it! Although I'm pretty sure my cheeks turned red!
Next week I will have my MUGA test for my heart on Tues., and then on Friday my 3 ct scans (chest, abdomen, and pelvic area), and bone scan. I should be glowing in the dark after all these tests are done! On either one of those days I will have an EKG too. I guess they don't have to schedule that. My gene test results should be in soon, and I need to meet with my surgeon too. Lots to do! I won't have surgery or chemo until after Alyssa's "wedding" (vow renewal and reception), which is May 23rd.
Okay--thanks for checking in, and thanks for listening--I feel better already!
Oh--Just wanted to mention that Shonna is singing at church tomorrow. Come and visit us at Bridgewood, if you'd like. :)
Love and blessings!
Tina

I'm Sure There's a Silver Lining Somewhere...

My oncologist, Dr. Jahagirdar, called me tonight (about 7 pm) to give me the results of my path report. Not much good news there, unfortunately. So, here goes:
The area of cancer (not necessarily a tumor) is 3.5cm (1 1/4"?); 3 of 9 lymph nodes have cancer; stage 2B; estrogen and progesterone negative; Her 2 positive. Her 2 is a hormone that, in my case, causes the tumor to grow, so I will have to get herceptin infusions to block the hormone.
The plan will probably look something like this: Adriamycin and Cytoxin (not sure about spelling yet!) chemo cocktail every 2 weeks x 4 (2months), then another chemo drug, Taxol, once per week for 12 weeks. I will start the Herceptin at the same time as the Taxol, and the Herceptin will continue on for 7 (?) months.
Also, the margins of the lumpectomy were not clear, so I will need another surgery(re-excision) to remove more tissue. Dr. J. thinks I should consider a mastectomy, because then I wouldn't have to have radiation, and I wouldn't have to worry about the margins coming back clear. It is possible that if I have a re-excision that the margins still may not be clear and I'd have to go back in again. Now, I do have a lot of tissue, but removing even more tissue could leave me quite lopsided and disfigured. I want to wait until we have the genetic test results and talk to my surgeon about all my options before I make any decision.
Next Friday I have my ct scans scheduled, and Dr. J wants to try to get some other tests done too. He wants me to have a bone scan (breast cancer sometimes travels to the bones), and an EKG and Muga test for my heart. Some chemo drugs are hard on the heart so they do the tests first. Someone should be calling me tomorrow to schedule everything for next week. I took next week off too because my surgeon didn't want me going back to work yet.
We are all a bit bummed right now. I'm leaning heavily on God. I'm scared of what the scans might find, because I'm not sure how much more of this I can take.
Rest assured though, God is with me.
Love
Tina

Met With the Surgeon

Ok, before I get started with details, I want to mention that I started getting sick this morning. My neck started to ache, which worked its way down my back and up into my head, then I discovered I had a fever too. Took Tylenol and ibuprofen, and felt ok most of the day. I mention this because I'm really tired and a little achy right now, so I'm not too concerned with grammar and making sense! :)
I met with my surgeon, Dr. Todd Morris, about 2 today. I really liked him. He's kind, and has a good sense of humor. He took his time explaining everything, and answering all my questions. He said I could have a lumpectomy with radiation, or a mastectomy. I probably won't need chemo, but might need hormone therapy. We went ahead and scheduled the lumpectomy for April 26th, and in the meantime, I'll have an MRI (next Tuesday) and meet with the genetic counselor (next Thursday). If more calcifications (or worse) show up on the MRI, I would probably have to have a mastectomy. If the geneticist finds out I have the "breast cancer gene" I could possibly end up having a bilateral (double) mastectomy. But for now, we are going with the lumpectomy. I could have chosen to have the surgery sooner, and do a mastectomy in the future, if needed, but I would rather have all the facts and then have just one surgery.
When I have surgery, the surgeon will also take the sentinel lymph nodes. He finds them by injecting dye into my breast, then watching which nodes it goes to, then those are the ones he removes. Its just a precaution; he doesn't expect to find anything in the nodes.
Dr. Morris said I am lucky to have caught the cancer at an early stage, and my prognosis is very good. We will find out after surgery if I need hormone therapy. The biopsy I already had was too small to tell whether there was estrogen or progesterone receptors. That basically means one of those hormones might cause the cancer to grow, and I would take drugs to block that hormone.
This morning I started to get very nervous about all of this. I REALLY don't want to have another surgery, and go through all this again. I mentioned on facebook that I was more nervous than I expected, and several people gave me encouragement and prayed for me. I spent some time with God, and felt more at peace (although I started feeling sick!). I don't know why I have to go through this, and I don't like it, but I pray that God's will, not mine, be done in my life. Then sometimes I wonder if I'm really that thick-headed, that I have to go through all this to learn the lesson God wants to teach me! :P
I want to thank one of my wonderful aunts for sending me money to buy treats for the cancer center. We stopped at Target on the way and bought a bunch of snacks. As usual, they were VERY grateful. My mom had crocheted some hats, and I brought them too. The nurses set them out, then anyone who wants one can take one.
Speaking of the nurses, I had a different one today (I had my port flushed before my appt. with the surgeon), and I told her about my new diagnoses. She didn't say much about it, just kept being all chipper and nice. When I was in the waiting room at the breast health center (across the hall), she popped in and told me how sorry she was that she misunderstood me. She was entering my info into the computer and somehow saw something about the breast cancer, and the other nurses looked at it too (the others knew me better and new that I had colon cancer before, not breast cancer). She had thought I was saying that I had started chemo for breast cancer a year ago. Anyways, she was very apologetic and said they all were sorry to hear about this, and would be thinking about me and praying for me. Those nurses are THE BEST!
So, that's my story. Oh--when I got home this afternoon, Brennan was here and I got to take care of him for a little while. He has a cold, but was still pretty smiley. He was more snuggly too!
I'll keep you updated!
Take care,
Tina