Tuesday, October 16, 2012

Cue the Guest Blogger

It's the Husband here filling the role of guest blogger.  Sorry to say that you're going from someone who, in my mind, is a very good writer to someone who is not.  But you're stuck with me for now.  And, I figured it was time to update folks on what's been happening since Vashni posted last.  Plus, I have a tendency to be, shall we say, frugal with updates and sharing information.  As Vashni said in one my favorite posts (from 12/20/11), "I am pretty sure that [the Husband] and I were married before any of his workmates even knew he was dating someone. Geesh. Share a little? Come on!"  So update time it is.

Anyway, last Vashni posted she was undergoing evaluation for consideration for another clinical trial at NIH.  She was ready to sign the enrollment papers but it kept getting put on hold for various reasons (again...see previous post).  Recognizing that each day's delay was one more day without treatment, she also consulted with her oncologist to see what he would recommend as the next course of treatment if she remained under his care and not do a clinical trial at NIH.  I'm guessing the options for fifth lines of treatment for her particular cancer are not as well-established -- he recommended treatment with two drugs, fluorouracil and Avastin.  Since these would be for off-label use, we needed preapproval from my insurance company.  Avastin is very expensive.  Fluorouracil is not.  I'll let you guess which one the insurance company approved and which one they denied.

So we faced a decision on whether to have her take the Avastin and hope our appeal was approved (or else find a way to come up with ~10K a month*) or start with just the fluorouracil.   Whatever we decided it was clear she needed to start *something* as her fatigue was increasing and she was becoming rather short of breath.  She was also getting significant edema in her legs which is a common side effect of her cancer.  But...she was going to start chemo again on Tuesday, Sep 18 and we were hoping that would help.  Turns out she didn't start chemo that day.  On the Monday before (Sep 17) her shortness of breath, fatigue, and general feeling of being unwell caused her to call her oncologist.  When she described her symptoms they immediately advised her to go to the ER.  So I left work and came home to take Vashni to the ER.

(* Our appeal decision arrived yesterday.  Denied.  According to the internets other large health insurers will approve Avastin as a second line of treatment for Vashni's type of cancer.  My employer does not offer me a choice on who my health insurer is and they won't approve Avastin as a fifth line of treatment even with some cited clinical studies that Avastin may benefit those with Vashni's type of cancer.)

While in the ER they took a chest x-ray and thought they saw a smudge on her lungs that could be pneumonia.  Or maybe a blood clot.  Who knows.  But given that she is a cancer patient and either of these conditions can be serious business, they suspected pneumonia and admitted her into the hospital so they can administer IV antibiotics.  They also ordered CT scans, an MRI, and an ultrasound to cover their asses, look for evidence to support a conclusion they made without data to confirm pneumonia and/or blood clots.  It took them a whole week for them to say she never had pneumonia or a blood clot but rather her symptoms were a possible result of fluid accumulation in her lungs impeding her breathing.  The same fluid causing edema in her legs.  My favorite part of the week was when they said they'd pick her up for her MRI on Wednesday morning and they showed up on Thursday evening.

While in the hospital her oncologist went ahead and prescribed her starting fluorouracil.  For whatever reason he prescribed it as 5 consecutive 24 hour IV infusions.  So Vashni was not released from the hospital until Sunday, Sep 30.  Ugh.  She came home to a hospital bed in the family room and oxygen concentrators/tanks per doctor's orders. 

I can honestly say that Vashni's strength and overall health were better the day she came home from the hospital compared to how she was shortly before being admitted.  However, her strength and overall health have since declined over the past couple of weeks.  At an alarmingly quick rate if you ask my opinion.  Last Monday while a friend was visiting she fell and hit her head.  Off to the ER we went again.  A CT scan of her head showed no issues so she went home.  But of the course the troubling question remained as to why she fell in the first place.

Last week she had a follow-up appointment with her oncologist and it was a struggle just to get her from the car to the clinic.  She had been scheduled for round 2 of fluorouracil to start today and her oncologist asked her if she wanted to continue with the treatment (hard not to read between the lines there).  He also suggested we consider hospice services (OK...even my clueless ass can read between those lines).

So here we are to today.  Vashni's strength and mental faculties have decreased dramatically over the past couple of days.  I don't really know what else to add.  Today she began in-home hospice visits. 

Please continue to pray for Vashni's physical and emotional well-being.  Also please continue to pray for Vashni's parents who have stayed with us for pretty much the past month providing all sorts of support and will continue to do so indefinitely.

Thanks to all who have provided me with words of encouragement, prayer, and support.  I'm too overwhelmed to respond to every single one but they've meant more to me than I can ever express.  And not just because I'm a lousy writer.

But most importantly thanks to all who have provided Vashni with words of encouragement, prayer, and support.  She's not able to use her iPhone right now but I have picked it up, sat next to her, and read to her all of your texts, facebook posts, emails, etc.  Please keep it up. 


  1. Roberto, thank you for the update. My heart is aching for Vashni, and for you. Please know you are both in my mind constantly, and I am sending my most positive energy your way. <3

  2. Thanks, Roberto - you have done a beautiful job. Thank you for filling us in - i would never have expected you to take the time. You, Vashni and all the family have our thoughts and prayers. Wish love, Rachel Batson

  3. Vashni, I am a friend of Erin (your sis-in-law). I am praying for you often!! - Esther

  4. Thank you for the update Roberto! Vashni would be proud! You, your family, Vashni's family and especially Vash are in our prayers every day. We will continue to pray for a miracle! With much love and prayer, Little Jen and family

  5. I have no words to express the emotions I feel for both of you! You will be in my thoughts and prayers! I hope that each of you may be as well as you may be. Most of all I wish each of you Peace.

  6. You both are in our thoughts and prayers! We are so sorry this road has been one fraught with such incredible hurdles. We are glad you have had one another to cling to (and Vashni's parents too!) Isn't the real miracle the love we share--it transforms us in times of challenge and shines a light in the darkness (all other miracles welcome too!) May you find strength and joy in one another even though it's not an easy road.
    we send our love,
    Claudia, Ruben and the boys

  7. I'm the only one awake here; geoffs asleep and I'm wide awake. I'm sending prayers of comfort and hugs for you all. Thank you for the difficult update; please keep writing as you are able to Roberto. We love you guys. Anne Geoff and the munchkin butts