The Name of the Game... Wait & Hope

After discovering that the old regimen Faslode and Xgeva aren't working the doctors office has been working with my insurance, special prescription program for the insurance, etc to get a new protocol approved and in place.

They are trying to arrange for me to take Armasin, another hormone blocker (technically it is a aromatase inhibitor, which is commonly used as a second line of defense when the patient builds up a resistance to Faslodex. But the magic bullet is the addition of Afinitor, a medicine used in the treatment of other cancers, but was very recently tested in treatment of metastatic  breast cancer.  You can read about the success of the study here. Women in the study were found to go 2x longer without the advance of the disease, but that 2x is the difference between 3 and 7 months.  I wish that it was years and years.

So, why this treatment?  Why not something more aggressive?

Metastatic Breast Cancer is at least a chronic condition, but it is generally a terminal diagnosis.  I have been hopeful that somehow a miracle would take the cancer into a non-advancing and undetectable state.  That isn't happening yet.  The reality is that the use of Afinitor and Armasin (The Double A's) is a less toxic choice.  If it can treat the cancer for now, then I don't have to use chemo again yet.

Chemo is a poison that kills more than just the cancer cells.  Treatments like AA are targeted therapies and do not do the damage to the rest of the body that chemo does.  So, when the time comes, which it likely will, when I have to use chemo again my body will be less beat-up.  At some point, patients who have to take chemo after chemo find their body can't tolerate it any more, and possibly that the cancer won't respond to it any longer.  Using AA will allow me more options in the future.

And what is the cost of this magic drug showing such promise?  Right now the insurance company is still reviewing the request for approval, but if they approve it they will help pay for it, great idea considering the cost, you can see that here, although these are Canadian drug sellers, American pharmacy costs are about the same.

But, here is where the Canadian CED says that the cost is so high the the value of doubling the length of time a patient has advancement of their disease isn't worth it, and here you see other countries agree.  So, the doctors office begins working on financial assistance at the same time they are working on approval with insurance.

Anyway, no matter the cost and choice that is made it is time for this process to get moving along. This week would be my week for the next treatment of the old regimen, so the drugs will be out of my system for the introduction of the new regimen.

I have been looking for new ways to help my body fight through whole foods and supplements again.  Today I went to Whole Foods and purchased Flax Oil for a new smoothie have learned about.  I also bought Shitake mushrooms ($14.99/lb.) because I read about their power in "Waking the Warrior Goddess" book.  I went to Costco for more CoQ10.  I bought fruit and veggies and $$$ later I came home too tired to care if I eat or not.  I went for a couple fists full of chips - quick and easy. I think I will have a smoothie for dinner now and go to bed.

Keep close to hear about the shitake mushrooms and other new foods I am going to try.

Quietly Holding Out for Courage

I have not been as active with my blog lately as I thought I might be, or as active as I was in the beginning.  Partly because I don't have much news.  There is a lot of waiting for time to pass so that the drugs can work in my system.  They are slow moving, so there isn't the exciting "quick wins" of chemo or surgery.  I have some important tests looming in the next few weeks, and if I stop to think about them too long I will grow scared and obsessive.  


The other day I actually wished I could go back in time, something I have never wanted.  Going back to a time you enjoyed more means reliving the time you didn't like, but the other day going back seemed better because going forward I will never be free of cancer, even if I becomes dormant I will always have it.  Going forward I will probably have to continue facing the things I face now.  


So I wished to go back one year.  One year ago there was no cancer to worry about.  One year ago it was just the kiddos and me making our life the way we wanted it.  We liked where we were living, what we were doing, and I wasn't working late hours at work.  


Some people know what we have been up against in the last few months, but most don't.  


I have appreciated making some cyber friends who relate to one aspect of my life- the cancer- with personal experience. I have also been grateful for friends who don't know, especially those who think I am so amazing for going forward as I must.  It is encouraging, but I don't know what else I would do- there is no place else to go- just forward.


So I am moving forward.  Forward to whatever changes lie at work and the organization shift that is happening.  Forward as Mommy, trying to provide alone all the things kiddies need.  Forward as a cancer patient, knowing I will never be cured, and hoping I will have long, long breaks between treatment cycles. 


I move forward and hope for better.  I hope for a job with opportunities and fulfillment, for better insurance coverage, for braces on kiddies teeth, for good soccer practices and new friends for the kiddies, hope for health and a life free of a cancer diagnosis for my babies.  Oh, if I could be the statistic so they could be free.  


But, for today, I can lay down in bed and say, "I will try again tomorrow".

CA27.29

This chart shows the last 3 months of tumor marker tests.  There is a slight increase in the result in January- the result for this month will be available in a few more days.  I think it looks ugly.  I didn't want to see the climb- an increase in the tumor markers in my blood, but the Oncologist isn't concerned.  She is looking at the trend, and looks to the scientific bright side, even if we stop getting the desired results with the current regimen, we have chemo. ~I guess the optimism is based on one's point of view.  I may have to adjust my thinking, but for me, chemo would be a defeat.  

Honestly, this treatment is getting harder on me too.  My feet hurt along with the ankles, other joints and bones this weekend.  I probably should have stayed home from the birthday party at the zoo, but I really wanted to be with my kiddies to celebrate ones b-day.  

So, I had treatment this week.  I got through just fine, but I am so tired and in pain.  I am going to try to handle with something brilliant, I just have to think of something brilliant.  In the mean time it will be heat packs, pain meds, and counting my blessings.

I am blessed because...

1. Got some laundry done today

2. Enjoyed a delicious weekend with pizza and cake

3. Family - love to hear the stories of little nieces and nephews over the phone, zoo parties, and kiddie hugs

4. Hot cocoa

5. Sweaters and slippers

6. Hair long enough for pony tails (hope I don't loose it because I have to take chemo again)

Oh the Pain!

I am almost 2 weeks out from my last treatment, but today I am experiencing a lot of discomfort.  I could be the added responisbilities at work as we are short 2 people in our department since Christmas.  It could also be the added stress from trouble with the kiddies Dad.  But, in the end- it is the cancer that makes it all so much tougher.
Last week I went in to a lymphadema specialist and felt really uncomfortable in my skin talking about having stage IV cancer.  It may seem shocking for those who are reading this, but I have a tough time accepting my cancer in such a personal way.  I live with cancer, I get treatment for cancer, I fight cancer, I can even blog about it and keep an emotional distance- but to be a stage IV cancer patient is scary.
Stage IV is the perceived train stop before End-Stage.  While I am confident that I will beat this and will not be End-Stage, maintaining my faith in that requires maintaining a distance from the diagnosis. 
Days like today make me feel fragile.  They remind me of the precarious state of my health.

So what?  What am I going to do about it?  Self pitty is neither going to change my situation or the joint and bone pain.

SO- I wore my sneakers today.  They are more comfortable and supportive than work shoes.  I am just staying at my desk as much as I can.  I am going to look into some alternative medicines for swelling and pain- I will take some ibuprophin tonight, but don't want to be using that all of the time because it is hard on the stomach.  I am also going to sit in the hot tub until my hands and feet look like raisins, have the kids read to me, listen to music, and make it a really peaceful night.
Does anyone out there know of others who have this kind of pain from Xgeva? I would like to know how they are treating the pain.

Cravings~ a medical condition accompaniment

I know that pregnant women get all the hype when it comes to cravings with their "pickles and ice cream" but it is a serious miscalculation to say these are the only people who have cravings while in an altered medical state.
When I was having chemo treatment a few years ago my body "requested" a very specific diet.  A few days after treatment when I started to bounce back I craved demanded rotisserie chicken, mashed potatoes and green beans.  That is what I needed. After some small meals of this I would be able to take a short walk -this was a stroll of about 50 feet out the front door at a pace of about 1/16 mile per hour, but if felt like the Olympics.
My cravings are starting to morph into demands with this treatment also.  I find myself needing a green smoothie- and I agree this is likely psychological- because I feel like it will pour nutrients into my system so there is no room for toxins.
It is too late tonight for the sound of ice and frozen bananas being crushed in the blender so I will wait until breakfast for my kermit-colored-treat.  Wanna try one too?  Here's my formula:

Breast Cancer Killer Green Smoothie
1 to 1.5 c H2O
Big gob of spinach
Hand full of Kale (if I feel like it)
2 bananas (frozen bananas are sweeter)
Some ice- I guess it is about 10 cubes
2T Flax Seed (if you have it)
1 T EVOO (can't taste it but I imagine it making my hair shinny)

*Blend it up on a lower setting and drink up!  You can add berries, but I have found I like it better without.

To all my friends (who I think of as fans when I am writing this blog):

Treatment went great today.  Today my parents went with me to touch base about life and hear about the little "Jerry Springer" scenes that nearly happened outside my front door. (And Texas used to be a "Springer-Free" zone.)

Nurse Stacey really stuck those needles into the muscle.

WOWZERS! IT HURT. 

I wanted to scream but it the pain blocked my brain from telling my lungs to holler.

It is supposed to hurt though, so that is good ~ this is how Nurse Stacey tries to sell it to me anyway.   I am just going to curl up with a heating pad and sleep it off.
I am praying for blessings for all who have done so much for me.  I am sorry to say, the list of people I want to personally thank is long.  Please trust that I will soon send a note, but meanwhile know that I am so grateful to you for offering so much!  Meals, house work, Christmas decorations, kiddie care, love, prayers, and such generosity.  I have been blessed! I hope you are blessed for all you give.
True love and friendship is so easy to recognize at times when life is messy.  

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!