The whole story of my pending biopsy

I have had a down-turn in my cancer situation.  Recently I completed my 6th cycle of Halaven chemo.  So, in spite of completing CT scans a couple of weeks ago, which came back clear, Dr J wanted to get a PET scan.  The insurance company began denying PET scans about 9 months ago when my CA27.29 blood tests had been dropping.  I just wasn't sick enough to justify the cost of PET scans.  But, in the last few weeks my blood counts have been climbing.  This justified authorization of PET scans, so that is what I got last week.

The PET scan day came - I went in at 6am, got the scan and then went on with my day just like any other day.  The PET returned results I wasn't expecting.  I was expecting nothing since that is what the CT had just shown.  But, instead, the PET showed activity in my back where it has been before, but has been inactive for a long time.  There are also a couple of new spots on my spine.  Additionally, there are spots on my ribs on both sides.  Finally, soft tissue has been compromised again with at least one lymph node in my stomach that is active.

(Active refers to the cells in each of these regions having a higher uptake of the tracer (radioactive glucose) than other areas.  This increased uptake points out where the cancer is making itself at home.)

All those years ago when I was originally diagnosed with metastatic breast cancer they did a biopsy on my bone.  The pathology showed the cancer was still hormone positive, but HER2-.  (Original diagnosis was triple positive for those of you familiar with this) Now, with soft tissue involved again, we are going to get another biopsy. That is the silver lining of this storm cloud.  I don't know if one result is better than another - it only matters that the tests are accurate and conclusive so we can make the most intellegent treatment decision.

Given that the cancer is back in my bones also I need to remember to talk to Dr. J about going back on a bone strengthening treatment regimine.

So, tomorrow I will have a biopsy.  There is a lot of hoopla involved in any medical procedure.  Arrive 1.5 hours early, wait around, be poked by a needle (at least a needle biopsy is what I am hoping for) and endure 30-45 minutes of waiting around until they will release you into the hands of a driver.  So, local anesthetic and lots of waiting, but I can't drive myself tomorrow.  This is my first medical procedure where I have not had my parents to drive me - first time, but not a big deal - thanks to my amazing friends.  I am so thankful for good friends around me who make this all so easy.

Hoping for un uneventful procedure and highly accurate biopsy results.

What is the Chemo Eribulin (Halaven) like?

So, I have finished round 1 of Eribulin/Halaven.  Each round consists of two treatments on consecutive weeks and a week off in between. About 50% of patients have few or no side effects. I have not fallen into that group. I am very defendant on my anti-nausea meds over the 3 days following infusion. I also get intense headaches and feel pretty exhausted. 

I have my infusion on Thursday. Friday I got home from work and went to bed. I was there all weekend except for driving the girls to and from some of their activities. Thankfully, we had help with that too. Monday comes and I wake up early. I lie in bed repeating affirmations in my mind that I can make it to work, I have rested enough. Today I got through my shower and started normal preparations, but my body is still doped up.  It just won't function quite right. So, I am taking a sick day.  I can't remember if this is my first or second one this year- either way I have been very successful at powering through. That's a blessing to count for sure! 

I don't know if I will lose my hair, again, it isn't a definite reaction to this chemo, but possible. If I do, I don't think I will hassle with scarves all summer. Too hot. 

I am afraid I am at the point where all the best tips for making chemo more tolerable are "labor intensive" and I struggle to have the energy to keep them up. 

I am struggling with a lot of things right now. But, I am trusting that this chemo is working.  Of course it is, that's why I feel so rotten.  (Scientifically this is not true.  Many cancer patients struggle with a drug just to find it isn't effective for them.)  But, I trust in The Lord, and in the words of a preisthood blessing, telling me this will be an effective chemo for me. This will stop the growth of the cancer. And, I am holding on to the faith of others that I can be one of the 2% who can be cured of stage 4 breast cancer. It will be a miracle. I do believe in miracles. 

More blessings: 

7. I have the best kids

8. I have sick days at work to use when I need

9. My family and friends have faith when mine is worn down

10. Warm heating pads

New plan, new chemo, new day

I am so blessed! Thank you for your constant compassion and support.  Thank you for the prayers and concern.  I felt more empowered with each note of care and encouragement.  One of the greatest blessings of cancer is learning the value of family and true friends in a way you never would otherwise.  I treasure the relationships in my life immensely.

You should know, I enjoy the time I spend with the staff at the oncologist.  I decided long ago that no one lets their friends die, so I make sure everyone in the office knows I am a friend.  There are a lot of laughs and it is nice to keep up on what is happening in their families.  So, when you think of me going to the oncologist you don't need to feel sad.  We really make the best of it.  For example, if you stand on one foot with one foot and the other foot extended far to the side when stepping on the scale- as long as you capture the first weight that shows, before the numbers bounce around a little, you can come in 3-5 lbs lighter.  The nurses laughed when I tried this, but it worked.

Now, about the most recent visit: I am almost able to predict the entire conversation Dr J and I will have.  I got it right again this week.  Thursday we decided that it would be pointless to take chemo which may not be effective.  So, I got a week off (YEAH) and we ran the blood through the CA27.29 test - which determines the level of ones tumor markers.  Results came back on Friday and show an increase again.  So, Abraxene is no longer an effective chemo for me.  I am moving to the next option, Eribulin, which you can read about here.  I think I need to send some new banner suggestions to the company.  "Put time on your side" with a picture of a old cancer patient isn't very appealing.  Also, the copy is horrible.  It tries to encourage by telling me that in clinical trials (older women with metastatic breast cancer) live an average of 13.2 months compared to those treated with other therapies, who lived an average of 10.6 months.  We aren't looking for months live, but treatment cycles without tumor growth.  Every other research study I have read talks in these terms.

To be clear, we are not fighting for the last 10.6 months here friends.  I will use Eribulin for a long as it is effective.  Over time tumors build a resistance to chemo-therapies, hence changing all of the time.  When I develop a resistance to this one there are a myriad of others and we will keep cycling through.

I feel that my prayers were answered.  Dr J and I discussed a laundry list of topics on my mind.  I also feel that this is the right step.  It sure isn't the step I would like to be taking.  I want to be telling you that I was miraculously cured - something that happens in about 2% of cases like mine. 

I am, however, happy to tell you that I am blessed,  I am loved, and I am thankful.  And, life is normal.  I am off to pay rent, shop for a graduation dress with my daughter and clean out closets.  I bet dozens have the same, or similar things on your list of things to do today.

Bummer test results

Up and down, exciting then scary.  Cancer, and the tests to determine whether the treatment or disease is ahead, is like flying on a roller coaster.
In the last week I have been so anxious to get the latest results of my blood tests back.  I was worried that my tumor markers wouldn't be where I was sure they should be.  I was also looking forward to the discussion about if it was time to stop chemo.  I was completely prepared to be excited and argue that an extra round or two would be smart - just for insurance.
My tumor markers had been trending down, I was sure last month they would drop off.
Clearly I have lost touch with my inner health compass.  My markers went up 30 points. 
OK, so now what? Well, I asked that the blood drawn this week be sent in for the tumor marker test so we can see if the last test was a fluke. I don't think it was a fluke, but it is what the drs and nurses always say. 
So, we are testing the blood so the doctors and nurses can prove that the change in my tumor markers aren't from a faulty test and to determine if it is time to change our treatment plan to a new drug.
What to wish for... what to wish for... I never wish to change drugs, because I know what is happening with the drug I am taking.  I know how my body is responding and how sick it does or doesn't make me.  A new drug might be better or it might be worse.
I am also trying to understand God's will.  Am I never to be NED?  Am I always going to be actively fighting cancer?  When and how will this fight end?  Do I dive in and give everything I have every day, trying to squeeze every moment of joy or parenting success, or do I hold back and plan to use energy over the long run?  How will I be most proud of how I lived?  Which will give my kids the best memories of their childhood?  Which is best for my career?
First I think: I am really not that sick.  I don't have tumors on my soft tissue.  It isn't in my brain.  It isn't on my kidney.  I have lots of systems functioning very well.  Second: I am getting so run down.  I am tired and don't spring back from set backs with much agility. 
So, who am I these days?  Am I a fighter or survivor, living with or running away from cancer?
Which of us has the upper hand?  Which of us is about to fly down a hill only to have to climb the next?
Such deep thoughts, I want a nap.

Scarves... and how they can change your life!

When you see this... you know you are looking at a cancer patient.

I guess I don't really think about it - cancer I mean, but I see it in peoples eyes when I walk around the building at work.  I work for a very large corporation with a sea of cubicles. When going to the restroom or cafeteria it is common to see people I don't know.  I have seen some several times, others I have never seen.  But they all see me and my 100% cotton or silk hair.  I can read a novel in their eyes. 

They almost always smile now that my hair is fabric.  I work with a lot of engineers who can, stereotypically, walk past without really seeing someone.  Not now.  Sometime I see a look of knowing - like I said before many people know someone who has/had cancer.  Read that story here.  Sometimes I see pitty - that is when I remember - oh yeah - I don't have hair.  

Since loosing a lot of my hair, read about that day here also, and then shaving, my scalp hasn't been in great shape so I don't take my scarves off in public yet.  But the few days I have suffered a heat wave (some call them hot flashes) at work there is no helping going topless.  I think it is a bit shocking for my coworkers to see that still, but they are very gracious.

So, in addition to coming out of the cancer closet, read here, I am now a cancer patient to everyone who sees me.  There is no hiding it now.  And, it does change how people treat you.  Generally the change is positive and empowering. I find most of the time people are concerned.  They want to know if they can help.  And, they think I am amazing.  OK - so some days I think I am pretty amazing too!  I mean, look at everything I am handeling - ROCKSTAR status for sure!  The other truth is that I don't know anything different. 

• I have had cancer since I was 30 years old.  
• I have had cancer since my youngest child was 6 months old.  
• I was receiving hormone therapy when my ex-husband became an ex.  
• I have been in some form of treatment for 7 years.  
• And, now the diagnosis of cancer patient is permanent.  Because, even if I am NED (no evidence of disease) and my blood counts are normal (whatever) I am a stage IV cancer patient. 

Scientifically, there is no turning back for me.  Oh well - that's me.  Spiritually, cancer is a small thing in my life. 
More important than being a cancer patient I am a Christian, mother, friend, and I bring home the bacon!  Cancer is like... a hobby. A hobby that gets in the way of a lot of things. I can say that because my treatments are so successful right now and the side effects of so manageable.  Cancer isn't always a hobby, sometimes it is HELL!

But, today is good.  Another treatment down today - and I managed it during the busiest week of the quarter with grace while managing some long days of working extra at home and the office.  That is a huge success to me.  But, I feel it too.  I can promise I will spend a  hours napping this weekend.  I think it is also time to turn in one of the coupons from my Mother's Day book for breakfast in bed.

Tomorrow is Go Bald for Cancer day.  I am going bald. (lol).  Will you go bald for me?  Or donate?  Learn more here. It is a program I just heard about a few weeks ago.  But, when I saw they support Dr Susan Love's Foundation I joined.  This foundation, in addition to many things is working to build a better database of breast health worldwide.  And, research is vital to Stave IV-ers like me.  ACT With LOVE and join!

To wrap tonight's post, here's a shout out to Football Players at Marsh Valley HS, in Southeastern Idaho.  (lived in the area for years.  Have life long friends there)  These awesome young men approached their coach with the idea of wearing pink in support of cancer at their game tomorrow.  WOW!  There should be some proud parents tomorrow when these young men take the
field.  They have heart and compassion.   
GO Eagles!
I understand these young men where challenged before getting permission to dress in pink and I am happy it worked out.  One day they will be faced with cancer if they have not been already already.  1/4 adults will get cancer.  1/8 women has a risk of developing breast cancer.  1/1000 men will get breast cancer (but I have learned to refer to it as peck cancer - men can believe peck cancer more than breast cancer).  I man I love died of breast cancer. These football players will draw strength from this experience one day.  And tomorrow, cancer patients in the bleachers will draw strength from their support.

 The game is at 7:00 March Valley HS VS Snake River HS.

Loosing hair during chemo

20 days after starting Abraxene: 

My hair is beginning to come out, but it is very minimal now. Here's how it started.  It is just a few strands at first that takes BigSexyHair to BALD-and-BEAUTIFUL.

I probably lost 25x that throughout the day. My scalp is really itchy and is covered with a stinging sensation.  It feels like you are getting a perm (remember the 80s?, perms and claw bangs.  Ya, I did that) and the perm solution is left on a bit long.  It was much the same a couple of years ago when I was taking the red devil.  (I had all the side effects listed here, and more.  It was a powerful (read pain in the ...) drug).  But - it is also a killer, in a good way.

I think the waiting is the worst part. When you find out you are going to loose your hair from chemo you  have to reconcile that fact in your mind.  When you have accepted your new fate, started telling people it is coming, and even buying wigs, scarves, or hats then it feels ok. But when you have done all that and your hair is still there you have time to start getting mad that you are going to loose your hair again and the you have to reconcile. 

A few days ago I ordered some scarves and yesterday I picked up my packages from the post. They are so pretty! I purchased a black and white batiks print and a jewel toned one from headcovers.com. I loved the selection and prices on this site. I definitely recommend them. Next I would like to get something with fall colors. Maybe like this solid beige.  But, I do love prints too, like the stripes.  Maybe even a floral.  Choices!

My new head dresses

I also ordered a wrap from GoodWishes.com.  LOVE THEM!  I am going to write a post about this awesome company and tell you how women with alopecia can get a free wrap or scarf!  I saw the marbled cat
and thought it would look awesome with a black blouse, jeans and gold jewelry.  I love the wild element too - you can't fight a tame fight against cancer.

3rd Abraxene, still my own hair 

Here is the head covering I am sporting now, from my plastic recliner at the chemo pharm.

Treatment went great today.  I really wished there was some Frank Sinatra playing so I would take my dance-partner/IVpole out on the floor between trips to the bathroom.  My tumor markers are doing arial stunts with nose-dives in the 50s this week.  (The normal range is 40-ish.  I was over 300, now under 200 again)  But, treatment takes a long time.  Between signing in, waiting to be called back, vitals, and blood work to be sure I have enough white blood cells for chemo, waiting for the chemo cocktail to be mixed, getting pre-meds, getting chemo, flushing the line, scheduling a follow up... I can't get it under 2 hours.  I really wish I was a nurse.  I would run my own chemo right at my office desk.  It wouldn't bother me at all, but for those who aren't used to the scene it may be distracting.  But really, when you are living with chemo the routine needs to fit into your life a little better.  Stage IV patients are looking at a long term situation.  What a blessing for cancer to become cronic and not fatal.

Now the treatment needs to catch up to patients like me who are the sole-provider for their family, raising young children, and trying to build a future not tiptoeing into retirement or disability.  It isn't home health - it is office health services. (My name is breastcancerwarrior@gmail.com and I approve this message.  I also claim it as my original idea for a business.  I will sue you if you take it!)

BTW - tomorrow is FRIDAY!! :)

Oops! Is that my car out of gas?

IT IS LAUREN'S FAULT!!!!

Even from 1,500 miles away she is making me run out of gas!

I was rushing off to my chemo injection, trying to make good time because I was a touch behind.  I lost track of time while working, but I was still going arrive within 5 minutes of my appointment, so I decided to just get gas after.  I mean, it is only 4 miles.  Just as I prepare to change lanes and circle around to the connecting interstate my car began "running" silently. 

Part 1:
"Oh, no.  Really?  Come on, just go a bit further.  Oh stop honking, can't you see I just turned my hazard lights on?  Do you think I wanted to a rest stop in the middle lane of the tollway? Just a little farther.  YES!  I can pull of there."
Calling mom, "Hi.  Can you help me?   I need gas."   I really hoped mom would just bring it.  But, nope, she brought dad.  He is not going to be happy about this. 
Gas can emptied into tank.
Give him something to think about besides how stupid it is to run out of gas.
"Well, would you like some chemo?" 
Dad: "What?" 
"I am going to go get some chemo, but I will share."
Dad: "Uh, maybe see if your mom wants to go."
Mom decides to come and we get int the car.

Car won't start!?#!
Stop Dad from driving off.
Dad jump starts the car successfully after 2 tries.
After gathering Mom, Dad, 2 NTTA Customer Care Car Service guys, zip off to the hospital knowing full well that if the battery was too dead to start right up on one try it isn't going to start after chemo when I have to rush off to take on of the kids for a check-up.
Decide I should have been shopping more aggressively for a new car.

Part 2:
Enjoy my soapy, internally cleansing Abraxane, laugh with Nurses H and C, tease Nurse S, and tell Dr J that this chemo is sooo much easier to manage than the Zeloda.  Check out the green smoothie the other nurse is drinking and compare recipes.
Zoom off to check kiddies out of school to get to the check-up I know will include 2 hours of waiting. 

Part 3:
Running tight on time so I am too hungry to stop for a 2:30 lunch.  Luck me, the check-up was lickity-split.
My mom is preparing to start a specialty baby blanket e-store.  She makes the sweetest cuddly blankets with crocheted lace edges.  She has designed her own edges.  They are
the most beautiful gifts.  I loved having them and love it even more when I get to give one to a friend.  
I will be creating the website so we begin to talk marketing.  Kiddo #2 comes up with an awesome name when the rest of us are too stumped to be creative. 

Part 4:
Finally, most of the most time sensitive tasks for the day are out of the way.  I ran into an old friend I haven't talked to in years.  We were just getting caught up when I had what my daughter called a "911 bathroom emergency" when she was in kindergarten. 
(Some of the details of chemo are less glamorous than the movies make them out to be.  It isn't all sweaty vomit and grey skin.)
So, it is about time to call it a day.  Only 6 more hours of things to do.  Soccer, getting everyone in bed, work for a couple hours to make up the hours I was stranded on the side of the road or hanging out with half of the medical population of Dallas.

Conclusion:

Who would have thought that the chemo would be the easy part of today?  

Abraxene #1 Done!

I had my first round of Abraxene yesterday. It is a ow dose, slow drip chemo. Because I am on a 3 week on 1 week off regimen it is only 100 CFCs, if I remember correctly. They premedicated for about 20 minutes with anti nausea (which worked beautifully) and steroids ( also worked - I craved food all night). Then the chemo dripped in over 35 minutes. They slowed it down for the first round to see what my body would do in response to the new drug. My body watched Dr. oz and Castle. How cool to watch mid-day TV. 

So- it was pretty slick. I think next time I will take my laptop and do some work. I was away from the office for longer than I expected, and work doesn't stop just because you get chemo. Since I am we'll enough I will work at the pharm and save time off for when I need it or to go on vacation. 

Hydration and a positive attitude will be key the next few days to keeping my energy and health at the best levels. 

Photo shoot - it was a flop

My last post was about the impending photo shoot in the radiology department to check out my insides.  The proofs came back and it has taken a few weeks for me to digest the results.

I have been so fortunate that Afinator, the drug I have been taking to control tumor growth, worked for so much longer than  it has for many other patients. I have also had far fewer side effects than many. 

However, all drugs come with risks and side effects, and I have reached a point where the effects of the drug are no linger acceptable. Afinator can cause (blah blah medical speak) a crystalizatoin of the lungs. I cannot recall the correct term, but it doesn't matter. It means I am off Afinator. The silver lining: I am so relieved that there is a good reason I can't walk into the building at work without severely loosing my breath and not being able to recover for several minutes. #so embracing. 

I have waited for the insurance to approve the new protocol :(   or   :)   -not sure which. And, now I am just waiting for the pharm to ship it. 

For now I am going to be able to stick with an oral medication that won't require going to the chemo pharm.  mucho good! I will start taking Xeloda.  I am pretty anxious about what it might be like, and worried about how to manage the demands of my life with this change. But, only time will tell what happens, and the only thing I can rely on is faith in Jesus Christ to carry me through this next 

phase of extraordinary demands.

Just tonight I found a blog telling about another patient's experience with Xeloda, it is encouraging. Very minimal side effects. She also said something I relate to very well. She decided to cut back her hours at work because she was feeling good.  She did not want to let that time go by without acknowledging that she was well enough to enjoy living.  I understand that choice, wanting to give your best self to the people and things you love, not knowing you good you will be in the future. 

Maybe if I had a husband who could support me financially I could take time off work and celebrate living.  

Ah- well.  Nothing I can do about this wish.  Unless...

SWF seeks SWM. I have a chronic, potentially fatal disease and young tax deductions.  Seeking health benefits and money so we can enjoy more free time, vacations, and some luxury.

How is that sales pitch? LOL

I hope you only get Breast Cancer in October

Welcome to October, National Breast Cancer Awareness month.  Given that 1/3 or 4/10 will get cancer, 1/8 US women (and 1 in 1,000 men) will get breast cancer.  Is awareness the real issue any more?  Do you not know about cancer? Specifically Breast Cancer?

Maybe "awareness" is a term that has been outgrown.  Maybe it is time for action, but not National Breast Cancer Action Month.  Awareness and action need to be daily, monthly, part-of-life things.

Well, if we truly only pay attention to breast cancer during the month of October, I hope you get it in October.  That way you will get it during the only time of year you have a chance of finding it.  And, since you will find it early you have the power of statistics on your side.  You are more likely to survive, you are more likely to avoid the more brutal treatments, because you are more likely to be able to control your cancer early and more easily regain control! I hope no one gets cancer next month when the ugly little curmudgins have the chance to set up house in your body for 11 months before you do anything about it.

BETTER YET - I hope you realize October and pink ribbons have nothing to do with saving you from  a battle with breast cancer UNLESS the month of October teaches you very early to be aware of the signs and threat of cancer young, early and always.

I often speak with women who are nervous to get a Mammogram.  Some have had false positives before, other are nervous about the unknown.  I wish I could make them understand - a mammogram won't kill you.  Not getting a mammogram won't prevent cancer.  There is a 50/50 chance that what you are worrying about is a waste of energy.  And, sorry, but which ever side of the 50/50 you are on - no procrastination or denial will change the chemical reactions of your body.  Either it is erratically reproducing damaged cells or your immune system controlled the damage.

Stand up and act!  Take that bull by the horns and regain control of your life.  Getting tested is the thing that will save you.

Let's not mix words here.  If your body is choosing to play hostess to nasty, self-imposing, loathsome cancer cells detecting them is vital.  Detecting them early can be the difference between the life and death fear you attribute to the test- not the disease.  Early detection - the kind of detection you are the master of with self exams and faithful professional testing- can be the difference between horrible suffering from extreme treatment and something much more palatable.  Even if the treatment is terrible, early treatment from early detection is going to buy you time.

So, I really don't care if you don't cover something in pink this month.  I do care about you getting over the fear of the test.

PLEASE! be active in your personal health quest.  I promise, a mammogram is WAY easier than loosing weight, cutting out sugar, waking up early.  Just Do IT!

Talking About Cancer with Children

Cancer? What am I going to tell my kids?

I remember the first time I found out I was becoming a cancer patient.  I had been in to see my doctor- I had a bit of a worry about getting everything back in order as I was post-pardum.  That visit turned into a relay of examinations that whisked me from the OB/GYN office to mammography then from mammography back to the OB/GYN where the PA cried as she told me it didn't look good.  She cried and I promised here everything would be fine.

As I drove home, a quick 10 minutes away, I contacted a friend who sold insurance to see if there was any way to buy up some more medical insurance before the tests can back. (BTW- the answer is no)

Then I called my parents and told them.  And, it was time to talk to the kids.  I can't remember if I told them that night or if I gave myself a day to get used to the idea.  My kids were under 5 yrs old, so the conversation was simple.  We ate ice cream cones (on the couch, so against the rules) and like the hockey-pocky, we figured out what it was all about.

There is no way, no matter how young the kids are, to eliminate the intuitive sense of worry.  They can all feel the stress and uncertainty. But, conversation and discussion can help.  IMO, the cancer patient should do a lot of talking if possible, but they need a great team of supporters who can help watch the kids for any signs of added stress an worry, which are sure to be there at different times as treatment continues.

I found this article, 10 Tips for Talking to Kids About Cancer.  It has some good ideas.  What has worked for you?  What ages where your kids?

10 Months!!!! Can you believe it?

I have a PET/CT scheduled for next week.  Then the week after that I will get the results and we will see where the last 10 MONTH OF CANCER TREATMENT have gotten me.  

10 Months!!!! Can you believe it?  

Here is where it all began.  Well, really it began back in June 2006 when I was first diagnosed with Breast Cancer.  Stage IIIB and an original tumor greater than 10cm and 18/24 lymph nodes involved.  I powered through A/C chemo followed by Taxol, perception, Arimadex, Aromasin and nearly 5 years as a survivor.  I had survived a mostly broken marriage, divorce, moved across America and even a period of unemployment during our recent economic crisis that plagues many.  I had put a bilateral mastectomy and reconstruction behind me.  After all that, I believed I would be taking on the world, or at least Disney World.

Instead, last October, nearly 1 year ago, I failed a blood test and ended up in Cancer-Detention.  (lol, I think that is a good name for a repeat cancer patient.  Maybe it should be Remedial-Cancer)  Now, each month I get a re-test.  Some months I pass, some months I fail - like this month when I had to start a new treatment plan because of my bad score.

I really have been able to continue on, at least on the outside, as always.    However, at home it can be a different story.  I spend many weekends sleeping or resting the entire time.  I have struggled with joint and bone pain that makes me want to cry or scream.  And, today, with rain storms brewing I had some moderate discomfort.

BUT, I haven't missed a day of work, besides surgery one day to have a port placed, because of my cancer.  I haven't missed one soccer game or swim meet because of cancer.  I have been truly blessed to fight with power, even when I am weak.

I have been so blessed.  I try to always see the things I have and the power I am given to do so much, because I believe it is your attitude that governs you satisfaction with life.

Be positive, be beautiful
Love, Kel 

Waking the Warrior Goddess

Today is Saturday morning.  I had a terrible nightmare that my children and I got separated in an amusement park, my cell phone didn’t work, and I couldn’t find them.  So, the warrior goddess is in a bad mood, stressed out, and tired.

But, last night I peeked into Chapter 28 of the book I got this week, Waking the Warrior Goddess. And read the cliff notes of the book.  I am trying to make the changes suggested, even if it means Waking a Goddess who feels like a bear today. 

My cliff notes of the cliff notes: The principles are many basic concepts of healthful eating that have been part of my lifestyle because of religious beliefs. 

•   No alcohol or tobacco
•  Limited red meat
•   Diet with lots of organic produce and soy
•   Various vitamins and supplements: there is a specific list
•   Early to bed, Early to rise
•   Exercise and maintenance of low BMI
•   Elimination of refined sugar
•   Cleaning products and household materials without pesticides
•   Daily meditation

I am starting with no alcohol or tobacco.  Done. 

Limit Red Meat.  I do this already, too!  Mostly because I choose chicken a lot.  When consuming red meat the book recommends organic meats, this is a change I would have to make.

So, in reality, what I am starting with is exercise.  Why is this hard?  I used to like to exercise.  In fact I still do.  But, with the business of being a Mom I am sucked dry of time for this, I don’t have the energy, and I hate leaving my kids while I workout.  I did get an elliptical machine this year, thank you Craig’s List.  So- I guess it is a commitment issue really.  I gotta commit.  The kids may have to work out too.  So, today is the first day I am committing to a new exercise regimen.  I haven’t outlined it yet, so it is a work in progress. 

Some of the things I do now:

• Take a walk at work during lunch
• Use the elliptical

I need to adopt these practices:

•   Some strength training
•   Stretching/Yoga
•   Regular exercise and a goal

I just presented these ideas to the kids- They were onboard with the one I expected and didn’t like the ones I expected (no sugar).

Are you interested in Waking Your Warrior Goddess?  Join me!

I am not the old me, I am me old

I had another treatment last Thursday (12/1). This was the third round of fazlodex and second of xgeva.  The treatment went great. I can "zen" my way through the needle sticks so the pain is less and less noticeable each time.  Also, my Onc had good news- she found a lab in TN that can do the FISH test on the bone biopsy. This is a more conclusive test than the other test, which have been performed.  This test confirmed the others showing the new tumors are HER2-.

So, with greater assurance we can move forward with our current treatment plan.    Dr J said that before Herceptin it was only 10% of HER2+ breast cancers that had a recurrence that was HER2-.  She wasn't sure of the stats now, but I have been nervous about my tumors testing negative.  I was concerned there wasn't adequate material from  the biopsy to get a true test result.  This test should take the question out of my mind, but I guess I don't totally trust science.  But, I will just keep moving toward the goal line.

The kids were sick on Friday, but I hate to miss work so they were with G-ma and Papa. I would have been smarter to be home with them. I was tired and not feeling my best, but went into the office anyway. I hope my dedication is noticed, but I am sure I put way too much into it myself.

Saturday I was so tired still, but there were several things I needed (wanted) to do, so the day ended with a party at church where I didn't feel very cheerful. I was tired and already knew the next day would include lots of time resting in bed.  I can't run all day anymore and should have known better, but I did it anyway.

I spent all of Sunday sick in bed with a terrible headache and upset stomach. My blood pressure was through the roof and stayed high through Monday. These are the kind of days I really feel like a cancer patient.  I don't just get tired, but sick when I do too much.  I spend those sick days contemplating mortality and if I have loved my kids enough.  Dark thoughts, but when you are sick- you are sick. Right?

But, I must be doing ok.  Here's what kid #2 made for me the other day, a double pink ribbon from her ballon-art ballons.  Isn't it sweet? And awesome that she figured out how to create it on her own?  They really are the greatest kids.  They have math rhymes, Christmas songs and lots of hugs to share every day. I love it.

I am just not the Mom I used to be, but I am not the woman I used to be either.  I get tired.  I have lots of responsibilities to handle on my own and I have this stupid cancer.  I want to be good and tired, the kind of tired that goes away with a good nights sleep.  But it takes more than a good night for me.  I wish I felt and looked younger than my age, not older.

Oh well, I am learning (all over again) that cancer treatment makes you abandon the concerns of vanity for those of extended mortality.  So I am old.  So what?  I am a mom.  I am an employee. I have insurance. I have amazing friends and family.  I am rich in the things that matter.  I have to keep track of these blessings.
And, I have to remember, beautiful is deeper than what the mirror shows.

The look of Stage IV Cancer

I have read a variety of blogs and comments about how stage IV cancer patients look. It is often confusing to friends and family to see someone with cancer. There is a hollywood image of cancer patients that is a little scary looking: a hollow look, grey-ish skin, bones protruding from an incredibly skinny body, etc.  But, cancer doesn't always look like that; often cancer patients look so average, well if the hair thing doesn't tip you off.
With many chemo cocktails used to treat Breast Cancer the anti-nausea drugs and those given to prevent a reaction include steroids.  Most breast cancer survivor blogs I read include discussion of treatment weight gain from steroids.  So, there you are with cancer, and plumping up like the goodyear blimp.
Cancer treatment can also change your taste buds. Plus, eating healthful foods becomes more important as you are trying to fuel your immune system, and your appearance improves.
In fact, when I was being treated the first time, after I found a good medical team, I think I looked pretty good.  Here I am with one of my sisters.

Me and My sister- first time in treatment - 5 years ago.

This was pretty early in treatment. I had lost my hair (obvious, right?) but still had some eyelashes. My skin still has a glow and my eyes are bright.  I really good wig and some false lashes I could have fooled most people about my cancer.
I am looking pretty healthy now, and friends are often surprised saying I look better than they expected.  I am glad to hear that I am looking pretty good, thank you.
I think this is due to several things: help from family, focusing on getting more fruit and veggies, which as been easier with the green smoothies, and the fabulous meals our friends have brought.  I love it when my friend, a nurse, brings nice meals with a focus on fruits with antioxidants.  She is so thoughtful to include that little boost to help.  I have also been tremendously blessed in many, many more ways.
Of course enjoying a LONG weekend is really good for everyones health.  I bought some new jammies for the kiddies this weekend, super warm ones along with slipper socks.  They were so cuddly warm they even slept in!
Stage IV cancer can look so average.  Depending on the current treatment, how long you have been in treatment, your support system and other factors, a cancer patient can look like any one out there.
You probably don't feel like an average person though.  I feel like I'm walking a fine line between wherever I am and a really bad prognosis.  I am sure I will get well this time, there is zero question in my mind that I will be NED (no evidence of disease), but I am not sure if I will get there on this treatment or if I will have to use chemo.  I am hopeful but nervous.
I don't know if or when the doctors will find new tumors.  I hope to be into the next decade of my life, maybe even older before I am told that I need treatment again.  I hope if the cancer comes back it will grow someplace less vital to my wellbeing- like my bones, as compared to my liver, lungs or brain.  But, for now, I have to stay the course.
I have a test on Thursday.  Hopefully the results show there isn't an increase in the tumor marker, or progression of tumor growth.  Then the next test, in a month, should show a drop in the tumor markers as the treatment drugs will have had time to attack and act on the tumors.  These results would show successful response to the treatment.
I will have monthly blood tests to pass, and every three months I will have bone scans to track the activity (and as time goes on, lack of activity) in my bones.  What we want is for this to take me to the point of no activity or NED which is theoretically guaranteed with my current diagnosis.
Once I reach this point I just hold on, with a hope and prayer, for as long as I continue to be NED.  Maybe when I get rid of the tumors in my bones I will start introducing myself as "Ned"because I will be proud to have that diagnosis as long as God will let me keep it.
So for now, I will use positive thinking, guided imagery, and all the drugs the onc and I agree will help.  I am cleaning the trouble and stress out of my life so my body can use more energy to making me well.  And, I am going to enjoy Christmas.  I love Thanksgiving- because it leads into Christmas and it is also the feelings of Christmas without the distractions.
Celebrate with me!  Count your blessings, make your life more positive, and enjoy what life has for you right now.
Love, Kel

Go Green!

I tried something new today:

Like a Roller Coaster - But Less Fun

I find it weird that we draw a similarity between difficult times, an emotional roller coaster, and the real thing- like at an amusement park.

I haven't been on a roller coaster for a while, but I recall them being fun.  You know, anticipation and excitement.

Here is how I recall it going: You are in line and think about chickening out, but cannot come up with an excuse your friends will believe. So you psych yourself up.  "It won't even last too long",  "We will have fun", "I am going to concentrate on smiling when we go past that camera so I don't look too freaked out in the picture".

Finally, you get on the ride and the clank of the safety bar rings with a hallow ting as it locks into place.  And you think, "if it is hallow is probably isn't very strong.  Everyone is going to hear about me crashing from the top on the 10 o'clock news. They will think, 'I am so glad it wasn't me'."

Now you don't care what your friends think, you just want to run!  But, it is to late.  Slowly the ride lurches into motion.  Even slower still it makes the first climb.  "Why didn't they put a stronger motor on this thing so it would be over already?"  Almost at the top and you decide, "I am not going to fall" and your knuckles are poking out of the white skin wrapped over them.

The first fall seems to be moving at the speed of a frame-by-frame instant replay.  The ride starts to speed up and you are tossed from side-to-side around turns and in loopy-loops.  Flash! I forgot to smile.

Your body starts to get used to the sharp motions of the turns.  You are starting to laugh in between screams.  Just as you catch your breath, the ride is over.  You want to stay for one more round, but they make you leave your seat as the next glazed-eye passenger embarks.

Well, there are twists and turns in your emotions when you have cancer.  You lurch from side to side and try to maintain some level of composure through it all, but flash! another surprise catches you with your mouth wide open and panic in your eyes.  


The difference is you don't start to enjoy the ride and you don't want to stay on for another spin.  You get off, sad to leave behind the friends you have spent every week with since it all began, and charge the crowd trying to outrun the clutches of "Mets".

I thought after I got over the first week of knowing my cancer was back it would start to feel like I was back on the ride I jumped off less than 5 years ago.  I thought I would get the swing of things and feel ready to keep racing up and down the track with the goal of getting off the ride for good to drive me forward.  Wrong.

Today was a drop down, a loopy-loop, flash! bang! roller coaster kind-a day. 

But, this isn't a roller coaster.  Roller coasters are fun. This is scary.  And, when you have to take responsibility for decision about which track to follow it leaves you second-guessing yourself.  Did I make the wrong turn?  Does the track ahead of me end?  Will it meet back up with the end of the ride or will I end up just looping around until...

Last night I kept thinking of these promises: "I am THE WAY, THE TRUTH, and THE LIGHT" and "My PEACE I give unto you".

And tonight driving from work to daycare I saw several cars with that "Life Is Good" saying on bumper stickers or tire covers.  I wanted to roll my window down and shout, "No it's not, you idiot".  I didn't do it; I do have some composure still.  

Then I thought- maybe I should stop fighting it and consider that Heavenly Father might want to tell me "Your life is good.  I am in charge. I will take care."  After all, Jesus Christ- my brother- is on my side too.  He is offering THE WAY marked by HIS LIGHT.

So I decided, white-knuckle-gripped, I am going to stay on this ride! And when it is over I am going to rush the crowd and get back to the life I was pretty happy with before I was forced on this non-fun emotional roller coaster.

I am not going to be on the news tonight or any night.  

I AM THANKFUL FOR:

Cards from Mom's Cousin

Mama Jean "Medicine" (grams, sugar, almonds- ya know?)

Sisters to whine to on the phone

Mom and Dad

My Babys

Thanksgiving

Co-Workers who redecorate for Thanksgiving immediately after Halloween

AWESOME Daisy troopers who want to help

Veggies

Diet Coke

Google

... shall I go on? 
Life is Good!...          

Lunch Break

I am just taking a few minutes of break in lieu of Lunch today.  I have to leave work about 90 minutes early to find out if I have cancer again or not, so I am skipping lunch in an effort to be fair to my employeer and my salary.
I did find this... http://www.youtube.com/watch?v=25eQp0mZ-qA
Don't know if it is true, but I have thought a lot the last few days about the monotization of Breast Cancer. 
I read on a blog:"what good does your liking yogurt lids do for me?"  (http://jillscancerjourney.blogspot.com/view/classic)
What good does it do?  Are newer tests coming out? Are treatments improving?  Everyone says. "oh, you will be ok.  They are getting new treatments all the time". But, are they?  Herceptin came out in 1998! That is a long long time ago! 
We need more, and I don't mean ribbons or t-shirts.  We need treatment solutions, improved testing, and a cure.
Don't get me wrong, I think the Komen foudation was genius in creating awareness, but we are all aware now.  It is time to develop a new foundation.  One that is seeking a cure, not creating world-class marketing collaboration. 
CURE ME!
SAVE ME!
Let me raise my kids!
Let me kids not suffer Breast Cancer!

Naps on the PET/CT Scan Table

If you are new to cancer world you might like to know what it is like to have a PET/CT Scan.  I always wanted to read a patients account of each treatment type before I had it, because it let me get psyched up.

This morning (6:30 am) I had my PET/CT.  This radioactive, glow-in-the-dark, chills-up-your-spine test itsn't such a big deal, as long as it all goes as planned.  I have had a few.  I do remember my first test though.  The second biggest problem was my nerves.  I just didn't know what to expect.  The biggest problem was the inscy-wincy spider that was spinning a web on the machine.  He was just little, but I just wanted him to go away and not drop down onto my body and crawl up to  my face.  Yes, that was my true fear.

Today's scan was critter free.  

What is a PET/CT Scan Like?
It all starts with trying to limit any physical activity for a day or two before the test.  You don't want any parts of your body metabolizing if you can help it.  Of course this means nothing to eat or drink after midnight... you know the drill.  Because of the fasting, I like to get the test done early.  Also, it is safe to assume that following the test and a good meal you can go back to work, so save as many sick days/hours as possible and just get this out of the way.

When you arrive at the radiology center you will be swept away to a small room with a hospital grade lazyboy recliner.  Using either old-fashioned veins or your sporty-modern port, you will get pumped up with radioactive contrast.  The reactions to this vary.  Some people have a metalic taste in their mouth, I have to steady my equilibrium. Whatever you feel, don't freak out just tell the tech.  I figure, they are trained to know "weird" vs. "scary" reactions, so just keep them informed.

Now you get 60 minutes to nap.  Just kick back, sleep if you can, and let that contrast circulate through your whole body. Admittedly if you aren't used to the plastic lazyboy this may be tough.  If you can't sleep sometimes they have quiet music they can play.  Again, communicate with the tech.  Let him know if you are nervous and see what they can do for you.

Once your entire body is "glow-in-the-dark" (you don't really glow) you get to trade in that icky plastic chair for the narrowest, flattest, coldest board ever made. 30 minutes!  You will get to lie on your back.  And, don't worry, they aren't afraid you will go crazy, everyone gets strapped in.  Just think, if you fall asleep you don't have to worry about your arms slidding off the board. This is the bone-chillin part of the exam.  They keep the scan room pretty cool.  I suggest wearing yoga pants and a longer sleeve t-shirt. Whatever you do, make sure you aren't wearing anything metal or you will have to change into a hospital issued drafty-dress. Brr.
You will "ride" all the way through the machine once or twice.  I think this is to get everything lined up between you, the machine, and the computer read-out.  Then you will move back through the machine as it scans one section of your body at a time.  It is slow, but harmless. That's it.  You can now go get something to eat and get back to the business of your life because all this hype leads up to some more waiting.

You take the test, but the results have to be processed, read by a professional (i.e. not the tech who just spent 2 hours with you) and then results formalized and sent to your oncologist.

So you'll wait.  Like I am waiting now.

Cancer will teach you to really control your mind or it will make you insane.
This blog helps me.  This isn't  my first time to the rodeo.  Because I have had cancer before with a full round of treatment and several scary tests that came back to show everything was fine, I am waiting until I tell most friends and family about this round of tests.  If it is serious, then I will cope with breaking the news again, planning childcare and treatment plans, and psyching myself up for whatever it is.  But, for now it is just me and you.  (You being anyone in the world that finds my blog, so I guess there are a lot of us)  I am giving myself the treatment.  Breakfast out as a reward for taking my test.  Calm days at work- no stress allowed. And enjoying the fact that for today I am cancer free. 
Whether I am cancer free tomorrow after seeing the doctor or not, I am free today.  And, today is all that matters.

I really hope that you get a good zen place.  Learn to control your mind so you can control your emotions and stress, and find your strength.  Is it you and blog world? You and a best friend? A religious leader? What ever it is, Be Strong. Be Beautiful.

Blood Tests

I am finally able to call myself a 5 year Breast Cancer Survivor.

Proud of my new title I went in for a check-up with the Onc.

I knew there was something when he took so long to come back to the room after the exam. Well, there were concerns with the blood they tested earlier this week, the CA27.29 is elevated. This tumor marker, though reputable for its lack of reliability, signals that there may be an enemy setting up camp in my bones.

How do I know this? After a bilateral mastectomy where else can it go?

Damn bones, I thought I was just weak and suffering from carrying extra weight. Funny thing, every doctor is concerned about your weight unless you are facing a cancer fight. Then, it is all about your blood, bones, and soft tissue.

So now what?

Well, I get to wait until they call me to schedule a PET/CT. This totally awesome experience is all about skipping meals and pumping your veins with something a little more action packed than blood. PET scans are high priced naps on a narrow, hard board inside a little tiny, cold tunnel with radioactive glucose matter coursing through your veins.

Scientifically speaking: The radioactive glucose is radioactive, so visable on scan results, and glucose (or sugar filled) so it is metabolized quickly in the areas of the body that are most active. And, cancer cells are active! Duh, they multipy and divide like maniacs. That is how they find the areas that appear to be cancerous.

Well, pump me up- Make me glow in the dark. I can take it.