Thursday, October 17, 2013

It's better. It's worse. It's... complicated. Moo.

Thanks to everyone for the hugs, notes, texts, and calls after my last post.  Living in the gray area was not fun.  However, we are OUT of the gray area, which is good!

We saw my doc yesterday after having a CT scan.  Basically we were going to find out if the cancer flare up was just in my hip, or if it was flaring up overall and getting worse.  Apparently it's not an easy Better or Worse answer.

The Better:  My hip is looking good. Still on crutches to aid healing, but hopefully I will be off of them in about 10 days.  No more pain at all with it.  My liver is looking better than ever!  My bones all look stable.

The Worse:  I have some newly-enlarged lymph nodes in my abdominal area.  Not huge, but with my tumor markers creeping up, this is not to be ignored.

The Complicated:  The cancer in the lymph nodes seem to be a mutation of the original cancer, so they
will need to be treated differently.  The doc used a farming analogy (which, as a newly-addicted player of Hay Day, I appreciated).  A brown-spotted cow jumped the fence and now is creating cows with long horns.  Both sets of cows want different food and can move in different directions, so we no longer have a herd all moving in one direction.

I was concerned that we were going to hear that the chemo wasn't working, but that's not the case at all.  He's thrilled with how well it is working on my liver.  We are just adding a hormone blocker to my meds in hopes that it will handle the lymph nodes, and we don't expect any side effects from the hormone blocker. We had a long talk about drugs that are in clinical trial phases right now that aren't available to me yet, but look promising should we need something new down the road.  In fact, he was VERY impressed that I brought drug ideas with me and that they were GOOD choices for me.  (Thanks for the tip, Grandma Annette!!!)  I always like to be able to impress that man - he's damn smart.

So, we are good here. I feel really good. I'm ready to quit using these dumb crutches. I'm ready to dance.  I just have more than one partner now.  :)

Oh and by the way, if any of you play Hay Day, my farm name is Jillschmill's Farm.  Find me!

Thursday, October 10, 2013

Gray Area

I've never realized before in my life how much I like having a plan.  Well, what I've really not realized is how much it can make me nuts to NOT have a plan.

We're in gray area again.

I saw my doc yesterday and had my usual tests done.  My lab work, including my liver enzyme levels and white blood counts, all look excellent!  However, I just got the call that my tumor markers are up a bit again for the second month in a row.  They aren't up by huge amounts, but enough to warrant a peek, so on Tuesday I'll have a CT and then see the doc on Wednesday.

What can cause tumor markers to go up?  A few things:
1) Progression.  Euphemism/Definition of the Day:  progression
A progression is a nice word for "it's gotten worse".  We are always wanting to hear that there are no signs of progression of my disease.
2) Radiation.  I had a shot of radiation three weeks ago (but my tumor markers had started to elevate before I had the radiation).
3) Oddly enough, the HEALING of bone metastases can cause markers to raise.

This means they don't know if my markers are up because of a progression or due to treatment, so the CT scan will tell us.

I also will be seeing the orthopedist tomorrow to follow up on my hip.  I'm still on crutches and my hip still bothers me daily a bit, but it is WAY better than a few weeks ago.  I'm on no pain meds - not even ibuprofen - and Jason has to remind me to use my crutches around the house instead of limping.

Hopefully by next week we'll have a plan and be out of the gray area.  The gray area is never easy for my psychologically.  It's like when we were in college and you didn't know about what your boyfriend was doing/thinking.  It is easy for your imagination to go places it shouldn't because you don't have hard facts to hold onto!  Of course, in college I would always just tell friends, "JUST ASK HIM! YOU'RE MAKING YOURSELF NUTS!"  Oh, if only it were that easy now. :)

On another emotional note, I've lost two cancer-colleagues recently, which has also been a bit rough. Jen Smith was my guide through all this, my attitude-twin in this metastatic world, out to conquer everything!  She passed away last week in her hometown of Champagne, IL.  This pic is with her son, who just started first grade. Jen is the person who introduced me to the idea of long-term disability, for which I am forever grateful.  She also is the one who suggested we apply for a retreat from Little Pink Houses of Hope, a trip we received and loved.  Jen wrote two books about living life to the fullest through this disease.  She was a glorious ball of energy and love.

Michelle White was one of the women who joined us on our Little Pink Houses of Hope retreat last fall in Delaware.  She and her daughter, Emily, were so lovely to be around!  We had a great secret sailing trip with just our family, Michelle and Emily that was very special. Michelle passed away recently in New York.

On the other hand, I have to say that I still know I am incredibly lucky.  I am in contact all the time with women who are in my shoes but still have to work to keep their insurance; women who don't have amazing husbands like mine; women who don't have financial means to hire a housekeeper when they are tired; women who don't have friends and family running to help with anything and everything; women who just don't have the enjoyable and BLESSED life I have.  I am thankful for all of it still every day, even if I have to really remind myself of it a bit more some days than others.

Thursday, October 3, 2013

The Controversies Surrounding Pinktober

As I stated yesterday, the onslaught of pink has descended in every store for Breast Cancer Awareness Month.  You may not know this, but in the breast cancer community, there is some controversy about this pink-ness.  Some issues:

1) Some survivors feel the decorating of all things pink trivializes what is definitely NOT a cute, friendly disease.

2) Some companies who put a pink ribbon on their product to sell in October actually give NOTHING to any breast cancer organizations for your purchase.  The pink ribbon is not owned by anyone, so any company can put it on anything to get you to buy it in October.  Please read packages to see if they say what charity they support.  Also, some products that get a pink ribbon on them actually have ingredients that may CAUSE breast cancer!  Want to see a list?  Please purchase wisely.

Metastatic Breast Cancer Ribbon
3) And this is a big one for people like me ... they say the pink ribbon is all about finding a CURE, very
important to those of us who have been told that there is NOT a cure for our metastatic cancer.  Yet, the funding in cancer research doesn't seem to match up.  They don't put their money where their mouth is.  Here is an excerpt from an article from last year's Ann Arbor News that I think sums up the issue very well.

Dr. Max Wicha, director of the University of Michigan Comprehensive Cancer Center and a breast cancer specialist, "Despite considerable progress we have made in fighting breast cancer, unfortunately, metastatic breast cancer is still not curable and accounts for virtually all of the deaths from this disease."
Dr. Wicha has been working hard to change that. His research aimed at attacking breast cancer stem cells offers hope to improve the outlook for metastatic disease. (Read my article about that here.)
But shockingly, funding for metastatic disease research is puny. The National Institutes of Health has, for the last several years, allocated about twice as much to the study of breast cancer than it has allocated to any other type of cancer, yet metastasis gets less than 5 percent of the research budget, according to metastasis expert Danny Welch, Ph.D.
If cure is the goal, why isn't more allocated to understanding and finding ways to stop the real killer? The number of deaths could be drastically reduced if research funding for metastatic disease were equal to the need, says Kelly Lange, vice president and program grants coordinator for METAvivor."
By writing this post, I'm not saying I feel the same way, but I wanted to show everyone a taste of what those inside the breast cancer community are talking about.  The message boards are HOT this week on these topics, with a range of opinions, but mostly these are the issues.  

Wednesday, October 2, 2013

Mesothelioma Awareness Day

We all know it's October.  Pink pink pink.  Is there really anyone out there who isn't AWARE of breast cancer?  I think not (especially if you are on my blog!).  So, I thought I'd give a bit of promotion to a type of cancer most of us have never heard of ... Mesothelioma.  It's caused by asbestos (remember the popcorn look of your elementary school gym??), so is completely preventable.

I don't know anyone who has mesothelioma, but was contacted by someone from the Mesothelioma Cancer Alliance, who are still trying to get asbestos banned.  Mesothelioma Awareness Day was last Thursday.  What? You didn't hear the big splash in the news??  Me either.  So, consider this a Public Service Announcement from me.  Here are some facts about asbestos, the ONLY cause of Mesothelioma. Be aware.