MEET THE BUS DRIVER!

Our Bus Driver - Dr. Connealy

After spending most of the day last Thursday at Oasis CA, we came home with a LOT more new information and recommendations.  Then Valerie's blood work came back - and parts of it are still coming back - we were feeling overwhelmed.  We scheduled to see Dr. Connealy again this morning before she leaves town for 2.5 weeks on Wednesday.

She was very sensitive to the issue of our budget and wanting to do as much as we can, but also spacing things out if possible to get the best bang for our buck.  She also was able to answer our many questions quickly and ably.  Such a relief.

Valerie's blood work showed low red blood cells and low platelets - thus the transfusion Friday and Saturday.  It also showed that she may be diabetic - that her adrenals are shot - her sodium is low - and that her thyroid funcion is very low.  In other words, the past 2 years have given her body a beat down.  Dr. Connealy was quite impressed with how well Valerie was and is functioning given those numbers.  It was also somewhat validating for Valerie to see the numbers and know that there are real things going on in her body causing her to be severely fatigued and suppressing her desire and ability to be more active.

They used biofeedback (see Valerie's left hand laying on a
biofeedback gizmo) to see what product would be best
to treat her depleted adrenals.

Dr. Connealy immediately checked all of these things as a routine check to see what all is going on in Valerie's body.  Dr. Chen (the oncologist here in CA) won't even order blood work for thyroid, let alone adrenals, or anything out of his box.  And even Dr. Cecena (oncologist at Oasis MX) never checked those.

Dr. Connealy is officially our bus driver.  She is competent, compassionate, and has the facility and knowledge to assist Valerie in her recovery - no question.

Here's an example of something that she tested for and is treating immediately - Valerie's low adrenal function.  If you google low adrenal function, you will find that it impacts just about everything:  weakness, nervousness, difficulty building muscle, depression, dry and thin skin, insomnia, dizziness that occurs upon standing, palpitations, feelings of frustration, etc. etc.  I mean, no wonder the doctor looked at her (with a DHEA level of 3.4 and normal is 35.4-256) and said "you are doing wonderfully."  These are all things Valerie has experienced.

The main treatment room at Oasis CA - all
of them are recliners that recline at the push
of a button.  And they all have massage.
This is where you sit while getting IVs.

She is a trooper for sure.  And she is far more tolerant and persistent than anyone else I know.  It's also no wonder that so many times throughout this process -- a hospitalization with calcium levels at 14.8 and normal is 8.4-10.2 or a blood transfusion with hemoglobin at 5.4 and normal is 11.7-15.5 -- that doctors have looked at her and said "it's a wonder you are walking and talking as well as you are."  While many of us - for sure ME - would be laying in a bed moaning and holding up our wrist with the "Fall Risk" bracelet on, Valerie gets up and goes to work, does errands around the house, goes to an all day Reiki class, organizes a meetup, prepares all of our records to get our taxes done, and generally keeps up good spirits.  A.M.A.Z.I.N.G.

Right now we are a little bit overwhelmed getting a handle on the new home treatments Dr. Connealy wants Valerie to do - here are a few:  eat portions of raw liver to help with iron / put A LOT of non-aluminum baking soda in her water to help her body be more alkaline instead of acidic (tumors thrive in acidic environments and can't survive in alkaline ones) / add more supplements between meals (in addition to the ones she takes with meals).  We are working on getting these, and many others, started asap.  It really is a full time job just getting in all the home stuff that the Dr. wants her to do.

I LOVE this picture.  She looks like she's glowing.  I also
love how all of the chairs in this medical clinic are these
fancy detailed wood chairs.  We are in a "traditional"
doctor's office treatment room with exam table
and fancy chairs.

Dr. Connealy has been nothing but positive about Valerie's prospects of getting stronger - of reversing these negative effects that cancer has had on her body - and of being healthy in general for the long term.  It is a wonderful place and we are thankful to have found them.

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.

UPDATE with VIDEO :)

The entrance to the Hoag facility where we
see Valerie's oncologist once a month and
where she gets her once a month IV treatment.

So, we were at the doctor's office Friday to see Dr. Chen and they ordered a STAT blood work up since Valerie has been so anemic and she's still very fatigued.  The blood work showed that her hemoglobin has dropped to 6.2 and they immediately recommended another blood transfusion.

However, Oasis advises against transfusions.  They say that the literature shows decreased survival rates and more aggressive recurrence of cancer with blood transfusions.  But Dr. Cecena also said that there are times that it becomes unavoidable and it's a quality of life decision.  So there was no clear direction on how to proceed.

The video shows my take on the decision we have to make..... and p.s. at the end I say "what's your vote?" - we don't really mean that.  :)

Valerie has decided for now not to have the transfusion and see if these new meds can kick in and take over.  She started the shots of Procrit yesterday (Saturday).  That's the med that is specifically supposed to help her bone marrow make red blood cells.  It can take up to a month for it to work, but we are hopeful that it'll kick in soon.  Tomorrow (Monday) she will start the chemo-like drug called Afinitor.  It's in pill form and the doctor is starting her on a pretty low dose.  The Afinitor, in combination with the Aromacin (which she started last week), have been shown to have good results in women with breast cancer.

In the meantime, Valerie just has to rest and not stress her body at all.  So GO 9ers!!!! (my vote) or GO Ravens!!!! (her vote)

and P.S. we are closer to getting this secret item that I mentioned on the last post, and possibly from several avenues.  Thanks everyone that has helped, including one I forgot last time - M.  ;)

COMMON QUESTIONS

Here are some common questions that I get - and the answers that I usually give....

Q:  Is Valerie still working?

For those unfamiliar with LA - here's the
drive that Valerie does when she drives
to work.  It always involves traffic and
a LOOOOONG drive.

A:  Yes - part time.  When we bought our condo in Long Beach 2.5 years ago, Valerie quit most of her contracted jobs and focused on our remodel here at the condo.  She is self employed and has quite a bit of flexibility in her schedule.  She quit several contracted jobs - she kept one - and she worked full time managing the people in and out of our house plus the bulk of the work that we were doing on our own. Her last remaining contract is in North Hollywood.

She has continued that job.  She has to be there once a week and the rest of the work she can do from home.  The drive is a pain - an hour one way with NO traffic in the dead of night.  Usually, in reality (with traffic), it takes about an hour and a half each way.  This drive has been complicated by the fact that Valerie's car has bit the dust and now we just have my car - a stick shift.  Driving that all the way from Long Beach to NoHo is not an easy task for her.

Q:  Why doesn't she just have surgery and get rid of it?
A:  She has considered that but the doctors do not recommend it until her blood levels are all back to normal.  With any blood results that are "off" they think there is too much risk to do surgery.

Q:  What can we do to help?
A:  I wish I had an answer to that questions.  I'm not really good at asking for help in the first place - I can admit that.  But, with this, it's hard to know what to ask for.  Many people have said "tell me if I can do anything" - and I honestly believe people mean it, but I don't know what to say.  But knowing people are reading, listening, offering, and keeping up with us is quite supportive - really.

Q:  How are you?
A:  HA!  I always get tongue tied at this question...but if you read the blog you probably understand why.  It's not a simple answer and it depends on the day. :)  But thanks to each of you... I, and we, are a little better because of your support, prayers, and positive mojo.

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

RECEIVING UPDATES

For those that would like to receive an email automatically anytime I post an update - please look at the top of the blog page.  Under the heading that talks about Valerie and this blog being direct and honest, there is a long empty box.  If you enter your email address there and click the submit button, you will automatically receive an email with the most current blog update in the email.

If you are on Facebook and would like to read updates there, I post the updates to a specific page and I can add you to that page.

If you're having difficulty getting the updates or responding to the posts, let me know - tmpjones@gmail.com.

Valerie does not always read the blog and she is not on Facebook.  If you would like to send a message directly to her - paget.jones@gmail.com.  She will see it there.  She may or may not feel up to responding, but she will see your message.

Thanks and love you all!

FEEDBACK WANTED

At least our visit to and from the doctor is a pretty view.  You
can't tell this in the picture, but we can see the ocean from the road.

Hi everyone.  

I'm not entirely sure who reads this blog - I know who some of you are, but overall, I'm never quite sure who the "audience" is.  I say this because I've been thinking a lot about the evolution of this blog and our process in dealing with cancer.  

The blog started back in August 2011, largely because Valerie had been hospitalized for a week and I had been sending a LOT of group text messages to keep our families updated.  So I decide a blog was easier.  After the beginning of 2012, Valerie's health had improved a lot  and there wasn't as emergent a need for disseminating information.  However, it has always provided an avenue for me to vent, share, process, and ask for support - and for that I am grateful.

SO, what I'm asking from you is this.... what would YOU like?  What do you want to know - what kind of information do you like ... or not need?  

At one point I think I thought of this as a crisis - a sprint - that would resolve in a year or so.  But what I've learned is that it's clearly a marathon.  We have to be diligent - daily meds, juicing, intentionally decreasing stress, seeking out comedy and distraction while not taxing Valerie's body too much, etc.  At this point, there is no end in sight to these things.  So we persevere.  That may also make the needs and point of this blog change as well.

Many of you routinely send me a message after reading the blog - through my email, facebook, or directly on here.  I always love and appreciate just knowing that you're "with" us.  So, while each of you may not see or know what others are saying, it's one thing I love and hope to continue.

So please feel free to share your thoughts and feelings.  I really want to know!

JANUARY 15, 2013

I just felt the need to clarify and explain a little more from the last post.  I wrote most of it in the middle of the night and realized later that I didn't explain things well enough.

Several people have asked me if we know what's causing the severe anemia (the really low hemoglobin), and I realized I didn't address that.  Part of the current dilemma is that we don't know and it kind of seems like the doctors are just guessing - well it might be this med or that med or maybe because it's Tuesday?  It's pretty frustrating and discouraging some days.

So, today we have a phone consult with one of the oncologist's in Mexico.  We know they have advised against blood transfusions - and the doctor here is recommending another transfusion.  So, we want to get all the information so we can try and figure out the next step.  We meet with the oncologist here next Monday the 21st.

Mind you, consulting with the doctors is not always the helpful and enlightening experience one might think.  We often come away more confused and frustrated than before.  And then there's the experience of meeting with the doctors and nurses here that Valerie is particularly affected by - "they look at me like I'm dying" is a direct quote from her.  And you'd be surprised how opinionated people (including medical professionals) can be about your choices of treatment.  anyway...

In the meantime, we continue to try and figure out how Valerie can stay somewhat active while also not stressing her body out too much.  All while also trying to stay hopeful and positive.

So we are currently taking any and all suggestions for comedies, ways to laugh, and general silliness. :)

Happy 2013!

Saturday, we had been watching the NFL
playoff games.  We ended up in a pretty nice
room for an ER and got to watch the rest. :)

Just a quick update. Valerie has been experiencing tinnitus (hears her heart beat loudly in her ears), and feeling fatigued and out of breath easily for the past several weeks.  She wasn't due for a blood draw until this week, but when the doctor heard her symptoms he advised her to get her blood drawn last week. She got it drawn Friday.

Saturday afternoon (Jan.12th) at 3:30pm, the on-call oncologist called and advised her to go to the ER because her hemoglobin was super low.  So we packed (in case they admited her) and headed to the hospital.

The last time Valerie was called and told to go to the ER (July 2011), she ended up being admitted and kept for about 7 days.  That was a really difficult time.  So as we drove, we talked about all the things that are better now than then - she's eating much better, she's much stronger, she's not in the pain she was in then, etc.

Because of her symptoms, they put this bracelet
on Valerie at the hospital.  All day Sunday, she
kept joking about being a fall risk, and that
turned into, "Honey can you get me a glass
of water?  Because you know!!"  (and she'd
point at her "fall risk" bracelet)  I have a feeling
this bracelet may not get removed for awhile. :)
But I LOVE when she's in good spirits and
joking!!

We ended up spending all night in the ER - from about 7pm - 5am. They did a blood transfusion - 2 units of blood / about 2 hours for each unit. The doctor there said that when a person's hemoglobin gets below 8 they usually recommend a transfusion.  Valerie's was 5.4  With the blood transfusion it got back up to 7.3.

She feels much better, but still needs to take it easy.  She immediately noticed that when we got home Sunday morning, she wasn't winded when she walked up our stairs.  That's a noticable difference.

So now the key will be to find a balance of taking it easy while also not letting her body get weaker. We don't have an appointment with the doctor until February 1, but I imagine this will initiate a meeting to discuss options.

Just wanted you all to know.  I'll keep you posted.

UPDATE & HAPPY HOLIDAYS!

Mrs. Claus

An update from my last post about Valerie's rising tumor markers and growing tumor.  She had a new blood draw and doctor's appointment last week.  Her tumor marker went up some BUT it did not rise by as much of an increment as it had before.  So, the doctor wants to wait one more month before making any decisions or changes - which we were in total agreement with.

Our little Charlie Brown tipsy tree - with the
tree skirt my (Tracie's) mother made while
she was pregnant with me.

The waiting and hoping and planning and watching are excruciating at times and there have been some emotional moments.  But we both continue to draw any strength we can from each other and from you and your thoughts, prayers, chants, and gifts.

We had a delightful and spontaneous visit from one of Valerie's sisters (Michelle) over the weekend of December 7th.  It was truly a wonderful and emotionally fulfilling weekend!  Thank you Michelle!!

And a couple of weeks ago Valerie decided she needed to go caroling (she LOVES to go caroling).  She found a meetup group and went and came out with ALL smiles. :)  The people there invited her to join their choir - it's the Namaste Center for Spiritual Living.  So.... SHE DID!  Tomorrow night I'm going to watch her perform at their Christmas Eve service.  She has thoroughly enjoyed going to choir practice and she's in the back room with the keyboard practicing right now.  It's completely heartwarming and joyful - two things we grab around here any chance we get!  I'll post performance pics later.

Enjoying the new porch.

Our new porch furniture!

So, the next news we will have will be the next blood draw and doctor's appointment on 1/18/13.  
Until then, happy holidays to you, your families and your loved ones.

NOVEMBER 2012

Last month, we had a fire at the beach.  That's Valerie at sunset.
It was beautiful - in more ways than one.

I've been meaning to do a quick update.  We need some more of your chants, howling, prayers, positive mojo, and whatever else you have that inspires health and goodness.  Valerie's tumor marker (see last post for more explanation) has continued to rise.  It is now at 497.  Her tumor has gotten noticeably bigger.  And we are waiting for the doctors here and in Mexico to give us their advice about how to proceed.

For those that have been to our house, we
added a bamboo plant on our porch.  We
LOVE it!

Valerie started a new medication in October that was supposed to address the rising tumor marker and they thought it would shrink the tumor.  So far, it doesn't seem to be working.  There's a chance the doctors will say continue and check again.  There's also a chance they'll say start chemo or something similar.

We used to go camping every other month or so.  After NOT
going for the past 2 years, we finally went camping about 2
weeks ago.  It was WONDERFUL!

We are, understandably, concerned and hopeful for some changes to happen sooner, rather than later.  Many of you have been so considerate, so concerned, so attentive, and so supportive.  I like to keep you up to date and I'm sorry when I lag behind.  It is a comfort to me to know that others are thinking, praying, chanting, and thinking positively for Valerie.  Thank you for continuing the fight with us.

On a side note, I started writing thank you notes a year ago.  Many of you have donated money, time, sweat, and given considerable amount of yourself to help in Valerie's healing process.  Those thank you cards have sat, unfinished, in a basket.  I work on them occasionally, but I fear they may be a loftier goal than I can achieve.  Please know how much we both appreciate all of you and your assistance and attention to Valerie's health and our wellbeing.  You may never receive an actual card, but one was purchased and thought of, you can be sure.

IT'S BEEN A LONG TIME!

A recent trip back east provided lots of laughs and hugs.

I can't tell you how often I've thought of blogging about how Valerie is doing.... but it's been VERY often.

I'm not going to back track to fill in the past few months, but instead I'll just pick right up where we are now. Doing that though requires a bit of an explanation.  For the past year, Valerie has gotten her blood drawn every 2 weeks - or pretty darn close to every 2 weeks.  They track several different levels in her blood and one of those is a"tumor marker."

More laughs and hugs!

A bit about the tumor marker.  Apparently there are many different markers and they are affiliated with different cancers.  In March of last year, when she was first diagnosed, they ran a CA 12-5 and a CA 27-29.  They were both normal.  In July they switched to a CA 15-3 (no idea why) and it was elevated (normal is below 32 and it was 97).  The CA 15-3 is the one they have stuck with and it's the one they routinely check now.  It went as high as 161 back in September 2011.  By January of this year it was 28 and it has stayed below 30 until June, when it showed up at 33, one point above normal.

Valerie's 51st birthday - snorkeling!

We were advised not to worry (yet) but to watch and see if it steadily climbs up.  Well, it has steadily been climbing since June.  It is now 75 and the tumor itself has grown during that time as well.

We are pretty certain that we know the cause.  There were some medication changes that we think were the cause of that and she has started a new med (a low dose chemo different from the one she had taken before) that we hope will bring things back to normal.

We've started volunteering at a local nature center - it is
quite beautiful and a nice getaway.

She has, otherwise, felt good and strong for the most part.  She was determined to have an active birthday because she was unable to do much of anything last year.  So we spent July 15th on Catalina Island.  We rode our bikes, we went snorkeling, we played miniature golf, and we ate some good food.  So, there are definitely a lot more good days than bad - especially compared to last year.

Valerie has started going to yoga regularly and using a guided imagery cd that helps her sleep.  I've been going to therapy and arguing with people on facebook about politics (my other therapy).   We plan to go watch the final movie on the beach on Tuesday night - Jaws!

We recently took a tour of a local island that looks pretty
from the shore but really is a major oil operation.

It's a weird thing this cancer battle.  We know people who get diagnosed, have surgery, and are fine and move on.  We know other people who get diagnosed and have progressively gotten worse until their fight is over.  We are learning that our fight, at least right now, is a bit of a marathon.  We have to pace ourselves and deal with what we can right at each moment.  There are bumps in the road and there are scares along the way, but we keep making each other laugh and picking each other up and that's good enough for me.

P.S.  My cousin Timmy died last night from his battle with cancer.  Our most sincere thoughts and love are with my Aunt Bell, Uncle Wayne and their families.

OASIS AND BACK TO LONG BEACH

The last day of family being here - Michelle and Valerie.
I had some pictures of the last few days that I forgot about
and wanted to include a few.

I've been meaning to post to finish off our stay at Oasis and update everyone about the status of the PET scan.

Valerie had another full day of treatment on Thursday and we went to class from 11am-12:30pm.  Even when we hear some of the same information, we learn so much.  And I should mention that the cafeteria staff are always so friendly and concerned about Valerie.  We always eat in the room because Valerie is attached to an IV poll and she often has to be on oxygen during some of the treatments.... so it's usually just easier.  The staff always ask how she is doing and they sometimes make a point to visit the room "to pick up our tray" so they can see her and tell her hello.

Our last breakfast out - sweet Lily and Great Aunt Val.

Friday we woke up and started to pack up.  Melissa had made plans to drive down to Rosarito with Jermaine and go horseback riding on the beach.  And I was up and down in the courtyard waiting for my uncle and cousin.  My cousin, Timmy (my dad's twin sister's middle son) has been struggling with his own bout with cancer and his dad, my Uncle Wayne, had made arrangements for them to go to Oasis for an in person consultation.  So the two of them, plus Timmy's wife, Kim, arrived around 9:30am and we hugged and talked for awhile before they saw the doctor.  They had to leave right after seeing the doctor, but not before Wayne came up and met Valerie and hugged her neck.  (I am so disappointed that I did not get any pictures of Wayne, Timmy, and Kim.)

Lily and Tracie acting
silly.  :-)

Valerie and I went to class at 11am again.  When we got back to the room (around 12:30pm), Melissa had returned.  I don't think I mentioned before, but Melissa did not have a passport with her when we got to Mexico, but her parents overnighted it on Tuesday.  As of 1pm Friday, we still had not received it.  Needless to say, we couldn't leave until we had her passport.

We got the passport around 4pm and proceeded to pack up the car and head out.  All of our experiences crossing back into the U.S. have involved a LOOOOOOONG wait.  This was, thankfully, the shortest wait we had ever had - and we even had time to pull over and make some shopping from our car.

We stayed the night in San Diego - partly because it was late and Valerie was tired and worn out from a week of treatment, and partly so I could see my uncle and cousin before they flew out the next morning.  It turned out that Valerie had a migraine and went right to bed and Timmy was exhausted from the day and he and Kim headed to their room around 7pm.  I met up with my Uncle Wayne and a couple of his coworkers.  They had been there the previous week for work purposes are were all leaving the next morning.  I got to spend a delightful evening with 3 Tennessee gentleman and talk to my Uncle Wayne about their trip to Oasis of Hope.  It really was an enjoyable dinner.  It turns out that Timmy wasn't sold on what they told him at Oasis - they did say they thought they could help him, but with the travel involved, which is very difficult for him, and with the unknown results, he wanted time to think.

The next morning - Saturday - we headed home.  That Tuesday was my birthday... mind you, last year, my birthday was exactly 10 days after Valerie found the lump in her breast and we headed to Urgent Care - it was a CRAPPY birthday.  This year, I took the day off work, decided I wanted to go see Star Wars: Phantom Menace in 3D ---- I LOVE Star Wars!!  And then we went to Parker's Lighthouse - paid for by my mom and dad and Valerie's mom (THANK YOU!).  I had crab legs that were BEYOND DELICIOUS!!!  And my sweet beloved spouse would not even take one bite because she knew how much I was completely enjoying them.  It was a thousand percent better birthday!!

Melissa and Valerie snuggling during an IV with Oxygen.

Then, that Friday, we had a scheduled appointment with Valerie's U.S. oncologist, Dr. Chen.  We met with him and talked about the need for a PET scan.  After much explaining, he finally understood and agreed that a PET scan would be helpful.  The catch is that he said a regular PET scan is not helpful in determining if the cancer is still in the bones - just in tissue and other organs - but that a special PET scan, a sodium chloride PET scan, is the only one that would show cancer in bones.  And of course, it's not a PET scan that they do at our hospital ... even though it's the "best."  But Dr. Chen also works in Long Beach and says he used this PET scan with Medicare patients all the time, so he ordered it and we will wait to see how much it will cost us to have it done through the PPO side of our insurance.

Me enjoying my crab legs ... they were DELICIOUS!

So, for now, we will just continue to plug along.  Getting the house done is still priority number one.  We have taken some time off to entertain and thank family and friends but are determined to get back to it now.  There are still some basic things around the house that will make healing and health a much easier goal once we are done.  I think people sometimes think we place too much emphasis on this, but I can not say enough how much impact it has on our health and well-being.  And of course, I am focused more on Valerie's health and well-being right now, but it really does impact us both in huge ways.  We will both be more relaxed and more healthy after this intensely stressful year, once we have a few more things done around the house.

Love to you all!

OASIS OF HOPE - ROUND 3

Lucia, one of our enfermas favoritas!

We arrived at Oasis yesterday morning for a week of "booster" treatment as they called it.  The doctors here recommended a week of treatment to continue the positive momentum Valerie has been showing.  Their reaction to seeing her this time has been so fun to watch.  :)  Her doctors literally just stare at her and smile... then they look at me with their mouths hanging open and point to her as if to say, "can you believe this?!"  And one of the nurses asked "Como estas?" as he rounded the corner into our room.  Valerie responded "Muy bien!" And when he looked up and saw her he said, "Muy bonita!"

It has been such a different trip this time around.

I suppose I should back up a bit... After Valerie's family left at the end of January, we've spent the past few weeks getting used to an empty house, reestablishing routines, and continuing our work on the house.  Then last Friday, Valerie's niece called and said that she and a friend would be at our house for dinner!  They had taken off on a spontaneous road trip, were currently in Las Vegas and headed our way!  :)

After a series of twists and turns in their trip, Melissa ended up being able to come with us to Mexico!  So, the three of us are currently at Oasis of Hope for the week.  And did I mention how different things are?! :)

Valerie & Melissa - walking along the boardwalk - Tuesday.

The first day of treatment was Monday, the day we arrived, because we did lab work last week and brought it with us.  So after getting here promptly at 10am, they brought Valerie's first IV at about 1pm.  :-/  Such is life here at the Oasis.  Even with that late start, Valerie still finished by about 7:00pm (6 treatments).

Tuesday, Valerie began treatment at about 9am and finished (6 treatments) by 1:30pm.  I don't think that has EVER happened.  There are several things that impact how quickly she can finish... how quickly they change the IVs when they are finished, how early they start once we tell them she is ready, and how well she is feeling and how well she is tolerating the treatments.  Obviously, the only ones we have any control over are the latter 2.  So, needless to say, Valerie feels much better this time around and is plowing through the IVs like they are water.  :-)

Our view at dinner - Tuesday.

Tuesday afternoon was a bit of a roller coaster.  Patients here can participate in the doctor's treatment team meeting if they request it - soooooo we requested it.  At 2pm, they called us to the meeting.  Valerie's regular doctors were there - Dr. Cecena, Dr. Carbajal, and El Jefe, Dr. Contreras - as well as 2 other doctors that are part of the team.  From this meeting we learned that they are THRILLED with her progress, and that their recommendations are:  1) for her to continue all current treatment for at least the next 3 months; 2) for her to have a PET scan (because it lights up the areas that are malignant - in her bones and in her breast); and 3) then to decide if she'd like to have surgery (likely a mastectomy).

Melissa and Valerie watching the sunset - Tuesday.

Their current impressions are that with her HUGE improvements in strength, weight gain, tumor markers, and overall general well-being, it's likely that she's pretty close to being in remission.  They would consider her completely in remission if they could see a PET scan with nothing lighting up (which is pretty much what they expect) and if they removed the lump or breast.

This was VERY exciting news.  To think it's been ONE year since Valerie found the tumor and they are now talking about taking steps to validate that she is in remission.  Unbelievable.

So we headed back to the room and I immediately called Valerie's U.S. oncologist.  I left a message asking if he would order the PET scan when we return.  His P.A., Jennifer, who we generally talk to, said that after talking to Dr. Chen, he doesn't see any need for the PET scan.  In their view, Valerie will always have Stage IV Breast Cancer, so there's not really any benefit to imaging.  And for the same reasons, they would likely never do surgery.  WOW.  Talking about taking the wind out of someone's sails!!  I was V.E.R.Y. angry.  I explained more fully to Jennifer why the doctors were requesting the scan and what their long term goals are for surgery.  She agreed to talk to Dr. Chen more about it.

Watching another sunset - Wednesday.

After hanging up and relaying her words to Valerie and Melissa, I could see that my anger was stressful for Valerie, so I went out in the hallway to pace and cry.  So now I'm thinking I've got to find out how much it costs to get a PET scan here and how much surgery will cost here.  This just never ends.  I would have liked to throw something, but hey, they've been really nice to us here.... I'll just have to wait until next Friday when we are in Dr. Chen's office. :) 

Sunset - Wednesday night.

After awhile, Valerie came out to find me and we hugged and talked and agreed that no matter what, she's going to be fine and we are going to figure this out one way or the other.  It's hard to believe how much there is to deal with - over and over and over and over.  Just when we think we've got a handle on one thing, another one pops up.  But Valerie is healthy and strong and we do both believe that things will continue to get better.

Today, Wednesday, treatment began about 9:30am and finished around 3.  Things are going SO smoothly that sometimes it's hard to believe how difficult the first 2 times were.  I told Melissa today that I sometimes look around and see the stress of other people who are here and it all just comes flooding back to me - I feel their stress and worry and remember my own.  But as long as Valerie continues to make huge strides and outdo herself everyday, I'm good.  And I wish the same and more for all of those here now.

Melissa doing a photo shoot at sunset with Jermaine.

Tonight we all 3 walked down to the water to see another sunset and to meet a friend that Melissa had made today - Jermaine.  She had agreed to take some pictures of him... and yes, we wanted to tag along and make sure he wasn't a serial killer. :)

Couple of more days of treatment and then back home to keep on keeping on.  Thank you all for reading and caring!

WE'VE MADE IT THIS FAR - AN END AND A BEGINNING

Valerie & Lily dancing on the beach in our fair city.

HELLO!!!!  Sorry for leaving you hanging.... :)

I’ve gotten a few nudges since then and I’ve been thinking about updating - but somehow my THOUGHTS do NOT turn into actions!?!?  ..... if only...

So I’m just going to recap the month of January - because it was a DOOZY (from a business standpoint).

Since they had time to waste, Sara took advantage of the
local homemade tequila.

January was a bit of a whirlwind.  Janurary 4th, Valerie’s sister, Sara arrived (her 2nd trip).  She was here from 1/4-1/10.  You’d have to ask her, but I think she had a great time from the looks of her Facebook page!  She did a lot of kayaking, biking, and working out.  

We were running out of some of Valerie’s supplements (from Mexico) and had decided that we just needed to go down and get a refill.  [Background:  I communicate regularly with the aftercare people in Mexico and I can order SOME of her supplements and have them mailed, but due to the U.S.A.’s restrictive laws, we can’t get ALL of them mailed.]  So Sara rode with Valerie to the Oasis of Hope to get a bag full of supplements to last us a few months.  

Sorry for the graphics - but this ended up being a big part
of the last month.  Valerie's mom had to let Valerie take
care of her during this time - making her breakfast, cleaning
her wound, getting her medicine, and checking on her 24/7.

One of the meds was not readily available, so they had to waste some time before heading home.  Other than Valerie almost falling asleep while driving, they made it there and back in one piece with all of the medications and Valerie was grateful not to have to drive alone.  [Background:  I have to be very careful about the time I take off - with the time I’ve used to go to Mexico and the trip we plan to take soon - I don’t have a lot of time to spare.  Otherwise, I would have liked to have driven down and gotten them for her myself.]

The day after they returned from Mexico, Valerie had her monthly appointment at the oncologist's office.  She received her monthly IV of Zometa.  It's getting better, but it tends to wipe her out for days after - sometimes exhibiting flu like symptoms for up to 3 days.

Mom P's "bandaid"

The following weekend, Valerie and I were headed off on our bikes to eat brunch.  Valerie got a phone call from her mom asking for a bandaid.  We put the bikes back up and went to see what happened.  Let's just say that these pictures do not even come close to showing how AWFUL the cut on her leg was.  She ended up needing a trip to the ER and about 10 stitches.  After all of that and daily cleanings, she's gone through an infection, 2 rounds of antibiotics and she's still on the mend.  Glad we rushed over to give her a bandaid! :)

Joseph & Maria transforming our garage!

From 1/11-1/16, we went to physical therapy, work, a play, and worked A LOT around the house.  There is still so much to do - painting, moving boxes, reorganizing, hanging things on the walls, staining the cabinets, etc.  Valerie and I do those things every spare minute we have that we aren’t just wiped out.

The play we saw was at our local theater.  Valerie, her mom, and I went to see “Barefoot in the Park.”  We had been wanting to go since we moved here and it was fun to go with Mom P. - even though I think she may have snoozed for a minute or two.  :)

Joseph & Aunt Val

On January 17th, Valerie’s nephew, Joseph and his wife Maria, arrived.  We have not seen Joseph for about 10 years and we have never met his wife, Maria.  They stayed from 1/17-1/23.  And again... you’d have to ask them, but I’m pretty sure they had a great time!  They went whale watching, to Disneyland, and walking around Long Beach.

Joe & Lily / making "dinner" on our new kitchen nook
table - Michelle had it in storage & it belonged to her and
Valerie's grandmother

Joseph took a day to put some extra shelves in our garage and in our front closet.  Maria is a natural at organizing and taught us all about “totes.”  :)  She and Valerie went shopping for storage and before Valerie knew it, Maria had filled up their carts with large storage Rubbermaid containers!  We are SO thankful to have extra storage and to have “seen the light” when it comes to “totes.”  :)

Having dinner at one of our favorites - The Pizza Place
Joe, Michelle & Melissa

During that time, we continued to go to 

Physical Therapy twice a week, Valerie had a blood draw, and we had to attend an all day training for our continuing education units for our licenses.

Two days after Joe and Maria left, Valerie’s sister, Michelle, her husband Joe, and one of their daughter’s, Melissa arrived - from Colorado - by car.  And little did we know.... when they arrived, they had a 30 pound living, breathing 

surprise in the car with them.  They brought Savannah’s daughter, Lily with them!

Valerie said that different people brought different things -
some brought furniture, some brought their expertise....
and she said, Lily brought the Sunshine. :)

While they were here, Joe hung the last of the blinds to get put up in our place.  WHEW!!  He, Michelle, Melissa, and Mom P. spent the last few days posting things on Craigslist and cleaning out #12.  It was a BIG job!

Valerie had decided that she really wanted to do something nice as a “going away” for her family.  Her mom had been here for 4.5 months, and Michelle had been here 4 different times for a total of about 7 weeks - and she had opened and closed the #12 condo.   So, Valerie bought whale watching tickets as a “going away” thank you. 

Great Grandma (Grandma Gigi) putting
lipstick on Lily

It has been hard for Valerie to do fun physical things for several reasons - she has been so weak for so long, and now that she has some strength, she has taken back up the chore of our on-going remodel - in the hopes that she will have a warm, healing environment sometime soon.  Between all of that, plus working regularly, there's hardly a minute to spare.

Since family first started arriving - July 28th (Vanessa) - until they all (Joe & Michelle, Mom P., Jon, Melissa, Sara, Bill & Dianne, Joseph & Maria) left - January 31, this is a snapshot of what happened.....

Front Row! on the whale watching trip!

Aunt Val & Melissa headed out to see the whales.

• Valerie was hospitalized because the cancer had spread to her bones, causing her calcium levels to rise to a dangerous 14.8 (normal is 8.6-10.2) --- her calcium is now a smooth 9.6.
• Valerie came home from the hospital using a walker and sleeping in a hospital bed --- she now sleeps in her own bed and hasn’t used a walker in months.  (side note - her physical therapist just gave her permission to jog... see video below)
• Valerie’s “tumor markers” reached a high of 162 (normal is below 32) --- it is now a low 27.
• Valerie was sent home for palliative (look it up) care by her U.S. oncologist --- she has since been to Mexico for treatment and her Mexican oncologists say that she is doing fantastic and they expect her to live a long healthy life.

There are still many ongoing challenges:  daily mega-doses of supplements; medication side effects - hair loss due to the low doses of chemo she’s taking, hot flashes due to the hormone blocker; pressure not to eat sugar or carbs because the tumor loves those things (think about what you really WANT to eat when you’re stressed and/or down); oh yeah, and then there’s the whole - “you’ve got a deadly disease, but DON’T STRESS OUT because that will kill you sooner” advice.  

In spite of the challenges, and largely because of the love and support of all of you, we push on and laugh as much as possible, love each other the best we can, and send our most sincere thanks and gratitude for each of you who have sent packages, invested your time & sweat, sent money, love, texts, and your warm thoughts.  We wouldn’t be here without you.

Here's to 50 more years!

I will continue to sporadically update the blog when eventful things happen - i.e. trips to Mexico / changes in health / or when I randomly feel like it. :)  Those of you on Facebook see the posts quickly.  If you aren’t on Facebook, you can enter your email in the box provided at the top of the page on any post and you will receive the posts via email as soon as they are posted.

As I read back over this I feel a sense that the blog is lacking something.  There's so much to say about the month of January - about the past year (it will be one year since Valerie found the lump on 2/18) - about the ending of family being close by - about resuming some sense of a normal life.  It's so hard to encapsulate it in a blog.  I had a difficult time infusing the emotion this time around.  Just know that it comes from blood, sweat and tears... even if I didn't articulate the tears and emotion quite as well.


Thank you all so much for your continued support and love.  We feel it and appreciate it daily. xoxo