MARCH 10 - DAYLIGHT SAVINGS

Okay, so we all lost an hour last night.... well, you're about to lose another one.  This blog entry is a long one.  And can I just say I've never understood the whole daylight savings in our modern world.  My mom and I can talk about the "springing forward" and "falling back" and "where does that hour go?" and we sound like a "who's on first?" routine!  :)  now that that's off my chest.....

Sorry for the delay in updating and thanks to those that are frequently asking about us both.  We have both settled into the fact that is likely a long term marathon that we'll have to manage.  I often wonder how it is for you - do you wonder "should I ask this time how they are?" or "do they ever talk about anything but cancer?" or ???  What do you think?  Just curious. :)

There have been a few things going on since we last "spoke."  When I last posted, Valerie was trying to avoid having another transfusion, but all day that Sunday, February 3, she felt "off" and "weird."  We called and scheduled the transfusion for the following day.  She always feels better after the transfusions - but there's that weird conflict of wanting to feel better and not wanting the transfusions if they are bad for the long run.... who knows?!

I do also want to clarify - when I say she feels better, here is some context.  The doctors say that for her to be in the normal range, they want her hemoglobin levels to be 12 or higher.  Hers hasn't been that high since March 2011.  She has felt okay and funcioned with a normal level of activity when it's been 10 or higher.  It has been below 10 since November 2012 - sometimes as low as 5.4.  So, when she gets a transfusion she may end up at 7 or maybe even 8 - but even then she needs to go slow and easy to preserve her energy.

Lately another issue has been her platelet count - that's apparently common with the new meds she's taking.  Platelets are what helps your blood clot so you don't just keep bleeding and bleeding if you are cut.  For years, Valerie has an occasional nose bleed - nothing new.  But for the past few weeks, she's had several nose bleeds and they last about 45 minutes.

I'm a little enfatuated with the sky.  LOVE it when we
have clouds. 

More context - normal platelet counts are between 150,000 and 400,000.  Hers have been normal up until January of this year.  At her last blood draw on 3/7, her platelets were 19,000.  And her hemoglobin was 6.7, so this weekend she got 2 units of red blood cells and 1 unit of platelets.  I woke up this morning and she was moving heavy stuff around in the garage like she turned into the hulk or something.  :) ...of course, a beautiful not scary version.

Valerie has been on her combination of new meds (aromacin, afinitor and procrit) since the beginning of February.  They are slow acting so we have to be patient.  However, this last blood draw was discouraging to see that her numbers were continuing to drop after a brief slow rise.  We shall see...

Some good news - There is a clinic here that is affiliated with Oasis of Hope Mexico.  They are called Oasis of Hope California.  The facility is very different and the therapies offered are some similar and some different.  We had a tour and recently a consult with the doctor who started the clinic, Dr. Connealy (con-EALY).  We ended up staying most of the day - she got a vitamin C IV with other vitamins and minerals to boost her immune system.  She got an electromagnetic treatment - it opens up your cells for up to 12 hours allowing the vitamin c (a natural chemo) to get into the cancer cells and work.  And she had an hour EVOX session - it uses biofeedback to address any emotional components that may be negatively affecting your health.  And we both had a delicious organic healthy lunch served there.

After being there for about an hour, Valerie looked at me and said "I have hope again."  They were so warm, caring, positive and competent.  We've had so many quesitons that no one has been able to answer and Dr. Connealy answered them all easily and confidently.  We are meeting with her again tomorrow morning to discuss Valerie's latest labs (that they drew) and to discuss her recommended treatment plan.

Some of the treatments are partially covered by insurance but we will still be looking at considerable out of pocket money.  We want to know what therapies are most important so we can try to budget and get the biggest bang for our buck.

Earlier I mention Valerie's latest labs (on 3/7) and the recommendation for the transfusion - that came from Dr. Connealy so we felt some comfort in letting her make the decisions.  We are both so exhausted from trying to determine what's best and what may be harmful.  We told her we were looking for someone to drive the bus becasue we've been doing our best but we aren't exactly qualified.  She agreed to drive. :)

She immediately ordered labs to target and check ALL aspects of Valerie's health - thyroid, diabetes, vitamin d, and vitamin b - on top of the regular blood work.  In the past, I've had to get one blood order from the oncologist for part of the blood work and another order from the primary care doctor for the other (if she'll order it).  It's been a huge hassle and just shows you how boxed in our medical people are.  They don't treat the whole body.

One of my biggest pet peeves - it is common knowledge in the cancer treating community that sugar just feeds cancer - cancer LOVES sugar.  Then why is it anytime we go to the CANCER center for a blood transfusion, they have people wheeling around carts filled with packaged cookies, sodas, and muffins?!?!?!?!  Drives me insane!!!

Cool sky after a rain - you can see the Cancer Center
sign on the right.

Some uplifting things we've experienced lately - we've started a regular/semi-regular skype session with Valerie's family in Denver.  So most Sunday nights, whoever is available - Valerie's sister Michelle; nieces Melissa, Johanna, and Savannah; nephew Joseph; and Johanna and Savannah's babies - join us on Skype.  Sometimes we just watch the kids run around while we chat.  Sometimes we play a dice game - and are going to try Scattergories tonight I think. :)  It's been a wonderful connection and boost for Valerie.

Also, I recently put out a request for deals or connections for an e-reader or tablet/iPad.  Valerie is so often either getting an IV or waiting at the doctor's office.  During those times she's often on her phone reading, watching something or working.  So I really wanted to get a larger screen for her to use more comfortably.  Within hours of posting the question on facebook, our dear friend Lisa, had ordered one that is being sent to Val this week.  SO thankful and can't wait to get it loaded up with books and videos for her.  Thanks Lisa.

Recenlty, after asking what she can do to help, I told my mom that she could fly out here ever other week and give our condo a good scrubbing.  :)  So, obviously she can't do that but she's offered instead to pay for a cleaning service for awhile.  So I'm asking around to see if anyone has someone that they would recommend.  Please let me know - and thanks mama.

Driving home from the Cancer Center.

And as always, thank you to those that comment, send a message, etc.  It really means a lot.