MORE CHANGES - this is a long one :)

This past weekend, we were lucky enough to
have Valerie's sister, Michelle,  pop in for a
quick visit.

First, I'd like to thank those of you who responded to my request for feedback.  I appreciate so much those of you who read and keep up with us.  It honestly feels like we are not alone..... I am not alone... in this weird, disorienting saga called "cancer."  For that I am forever grateful.

The feedback I got mostly said - tell us how you really feel - let us help more - and thanks for keeping us in the loop.  So, I will continue to write - and maybe I'll even write a little more honestly at times. :)

On to the update - there's quite a bit.

The last update was about Valerie being severely anemic and having to go to the ER for a blood transfusion.  [[side note - it's annoying to get a notice in the mail from our insurance group asking if we consulted with our PCP before going to the ER and did we consider going to Urgent Care instead - blah blah blah.  Sometimes those little annoyances push me close to the edge of calling and yelling at someone --- "DO YOU THINK WE ARE DRIVING AN HOUR TO GO TO THE ER ALL NIGHT LONG JUST FOR KICKS?! -- Ok there I said it.  Thank you.]]

Michelle's visit involved a trip to a favorite coffee shop /
restaurant - The Royal Cup Cafe.  Valerie and Michelle
had a cut throat game of chess going on... (p.s. Val won!) :)

Since that time, we have indeed figured out the cause of the anemia - the doctor here and in Mexico both initially thought it was likely that there was tumor activity in Valerie's bone marrow.  That would explain the difficulty her body is having in making enough red blood cells.  So, she had a bone marrow biopsy last Thursday and we just learned that there is, in fact, tumor activity in her bone marrow.

While we were waiting for the biopsy and the results, we consulted with both doctors and they were recommending the same treatment regimen - a combination of Aromacin and Afinitor.  Aromacin is another hormone blocker (like the ones Valerie has taken in the past - Femara and then Faslodex).  Afinitor is a chemo-like drug that is usually given to people with kidney cancer or to people who receive kidney transplants.  But it's also recently been having success, when paired with the Aromacin, in treating breast cancer.  So, Valerie started the Aromacin several days ago and the Afinitor is scheduled to be delivered Friday.  It's a specialty drug that has to be delivered instead of picked up at our local Rite Aid.

Then there was the added recommendation of adding a drug called Procrit to the regimen to help her body make more red blood cells.  That will also be delivered on Friday and it requires self-administered injections once a week.  Both of these 2 drugs that require delivery are not our usual $5 co-pay at the pharmacy.  They are $100 co-pay for a month's supply - each.  Just more adjustments and concessions to be made.

In the meantime, the original tumor has grown and has been quite painful lately.  There are times that there is shooting and stabbing pain that is very difficult to manage.  Valerie does everything possible to manage it well - hot baths, meditation, ibuprofen - but it is agonizing to see her having to deal with that pain.  Yeah - poor me, right?  I hate seeing her in such pain and I hope that these new meds will kick in soon and start decreasing the tumor.

In making these changes and trying to decide the best way forward, we have also looked into the local Oasis of Hope California (in Irvine) and Cancer Treatment Centers of America (CTCA).  We toured the local Oasis of Hope (affiliated with the place we've gone for treatment in Mexico) and we were very impressed with there setup and with what they offer.  We are working on getting together a summary of treatment and testing so that we can set up a consultation with them.

I also talked to CTCA on the phone and they will fly us to one of their facilities (most likely Chicago or Atlanta) and do a 3-5 day consult with all expenses paid by them.  We will possibly work them into the equation just to have another opinion.

One of the things that has been sadly missing from Valerie's treatment is a consistent "bus driver."  We dont' have one person (treatment provider) to go to that can give us advice.  We have to talk to Mexico, talk to the docs here, then figure out what we think of the 2 opinions.  They never talk to one another - they don't consult - we are just left to figure out what to do.  It's been very confusing and difficult.  We are looking for a bus driver.  It seems that Oasis CA or CTCA would offer that.  If we figure out a way to afford the treatment at Oasis, I think we will end up choosing that option - while possibly continuing the treatment with the current oncologist.

I want to throw out a few thank you's.  To my mom for letting me vent and unload all of my frustrations and concerns - and also for offering to pay for a house cleaner for awhile to get us through this.   To some friends who have been on a special mission to find a product that we think will really help - due to the sensitive nature of the products, I'll just mention you by initials - A, D, J, and J.  And we seem to be close to finding this treatment due to these friends.  To Jen for the FABULOUS adult onesies and bag of movies to watch.  And to everyone who offered recommendations for funny things to watch - we've added most, if not all, of those to our Netflix queues.

On our drive home from the Royal Cup, we saw this
awesome biker with his bedazzled bike! :)

Valerie continues to tire easily - her hemoglobin counts are better than when we visited the ER but still lower than normal/healthy.  She is not supposed to exert herself - and if you think about that, it really eliminates a lot of daily routines like carrying groceries up one flight of stairs, taking our heavy bags of trash (down a flight of stairs), and walking for health and stress relief.  We hope the new treatments will elevate her blood counts and allow her to be more active.  The reduced activity has been hard for her emotionally and mentally.

We meet with the oncologist here on Friday for a more detailed discussion of her biopsy results.  [[side note sort of - I've had some pain and swelling in my right hand (dominant hand) for the past 4 weeks or so.  I'm getting it x-rayed on Friday since the x-ray facility is in the same building as Valerie's oncologist.  Needless to say, having a dominant hand that is constantly in pain is no fun.  Hopefully that will be resolved soon too.]]

Until next time, thanks for all the support - prayers - well wishes - and laughs.  :) xoxo