Help Javier

Cancer.  it is certainly not something you expect to hear as a newlywed.  You plan for spending time, growing old together, and helping to raise four young boys that you love as if they were your very own.  Instead, my bride and my step-sons are worried if I will be here for Christmas.

********************************************************************
August 7 - 8, 2014 
University Medical Center
Otolarynology - 5th Floor
Dr. Gernon's office

August 7, 2014

We went to get Javier's biopsy on Thursday, but we were sent away. We waited two hours to eventually find that Pathology was not around to perform the biopsy. We were asked to come back the next day. Dr Gernon wants Pathology to be up in the room to make sure that the biopsy produced enough cellular samples, so we did not have to come back. Not completely sure that we actually DID get enough cellular samples, but we will get to that later... However, we DID get to see some images and also got the "bad news" from the doctor.

Thursday 8/7/2014


Waiting in the Waiting Room


Checking in 


Signing our life away...again


Finally in the Procedure Room


Can't you hear Javier saying in a thick, "Dos Equiis"  accent, "I don't always waste 2 1/2 hours in a doctor's office.  But when I do, I spend it at University of Arizona Medical Center." ?

As I mentioned, we did get to see some imaging from teh PET scan.  We took some photos to share.  We will have to get our own, official copies from Medical Records next week.

Anything that looks like a Happy Face can't be ALL bad news, right?











So now for the bad news...

The doctor came in and briefly discussed with us what the imaging was saying.  He has not only enlarged FGD-avid lymph nodes in his neck and armpit, but also in the middle of his chest - including right up against his heart.  (To explain what FGD-avid means is that cancer cells are hungrier than regular cells.  So when they put the radioactive tracer in his blood for the PET scan, they lace it with glucose.  The cancerous cells "eat" the glucose more rapidly, pulling along with it, the radioactive material, which the PET scan picks up as darkened areas.  Other areas of the body will naturally use glucose more rapidly, like brain, heart, bladder, etc.  So, don't panic because his brain is darkened.  That's normal!)

On to the bad news (again)...the doctor is confused as to the nature of the lymph node activity.  For salivary gland cancer, it is not behaving like it should.  The metastatic activity should NOT be travellling down into the mediastinal area (area between the lungs and against the heart). 

Because the mediastinal area is involved, the doctor said that the cancer is now inoperable.

Yep, that was the REALLY bad news.  Horrible, terrible news.  Because if it IS salivary gland cancer, chemotherapy is not a treatment opion.  It just does not work on salivary gland cancer.  It is sometimes used to weaken the system so that radiation will be more effective in treating the areas after the cancer is removed surgically.  So if that IS what Javier is diagnosed with, it will be an uphill battle (in the snow, without shoes and carrying a dead pack-mule on his back). 

However, the doctor said he is confused because salivary cancer just does not act that way.  So he wants a biopsy to rule out lymphoma.  It is behaving more like lymphoma, in the path that the lymphadenopathy is taking.  That diagnosis would be just bad news.  Because lymphoma can be treated with chemo and radiation and does not require surgery to have a complete remission.

Now...this may just be hopeful and complete denial.  But I went home, numb and devastated, and began to do a google search on what could be BENIGN (non cancerous) causes of medastinal FGD-avid lymphadenopathy and found a very plausible cause:

Sarcoidosis.

Sarcoidosis is not cancerous and is really quite serious leading up to possible death.  But it is not CANCER.  It is an auto-immune disease that affects many different systems in the body.  You may have even heard of it on House, M.D.  House, or someone on House's staff was always bringing up sarcoidosis as a possible cause of weird random things about every other episode.  And Javier DOES have an un-specified auto-immune disease that was discovered a time before he started having problems with his salivary gland, initially.  Many of the symptoms he suffers from ARE also symptoms of sarcoidosis.  But those symptoms also occur in MANY other auto-immune diseases.  But is the only thing I can hold on to right now and stay composed and hopeful during this waiting period before we get the results of the biopsy.  

Now, on to the biopsy:

********************************************************************
August 7 - 8, 2014 (continued)
University Medical Center
Otolarynology - 5th Floor
Dr. Gernon's office

Waiting.  We are getting GOOD at this!


Finally back in the procedure room


Pathology's "Basket of Goodies."

The Pathologist, Dr Zahra Aly, locating the lymph node to biopsy


1st attempt at biopsy


Another attempt at same node

They actually brought Pathology up to US!


Dr Gernon came in before Pathology arrived.  He advised us that he would be referring us to Dr Kratz, an oncologist, after the biopsy came back with the results.  He had spoken with Dr Kratz about Javier's case the night before, at the Tumor Board, where he presented Javier's case to a board of oncologists about the confusing nature of his cancer.

After Dr Gernon left, the pathoogist, Dr Zahra Aly, arrived.

Dr Aly biopsied 2 lymph nodes.  We told her about our Sarcoidosis theory, which received a chuckle and advice to "stay off google."
She biopsied 2 nodes and got very little material, despite eight attempts at Fine Needle Aspiration from each.  

THE GOOD:  She said that the lymph nodes were mobile, not fixed, which she said was a good sign.  Also, from the 1st look, she said that the cells, under the microscope looked good, as in not cancerous from the 1st glance.

THE BAD: At the end, despite having said the nodes were movable and the slides looked good, she said "You're going to really like Dr Kratz. (The oncologist who we will be referred to)

THE UGLY:  After everything, we are back to waiting.  Dr Aly said the results will be sent to the doctor in 48 hours.

Javier and I have to wait 48 hours but we wanted to lessen the wait for you and not update until today.  48 hours are almost up.  i assume, however, we will not hear anything until tomorrow.

Please keep praying for us.

Please keep sharing this page.

And please, if you are able to give up a Starbucks or a lunch out this week to help donate, every little bit counts and helps tremendously!

Thank you.


********************************************************************
University of Arizona Medical Center
27 JUL 2014
MRI


Heading in to get the MRI  


Admissions 
What are they going to get him to admit??


He's hooked up to a truth telling Admissions Machine...okay, maybe not.  They are just processing the checkin for the MRI.


Getting ready for the MRI


New Fall Fashion from the 2014 Marc Jacobs Line!





********************************************************************

From My 10 year old stepson:  
My name is Max.  I am 10 years old.  I have three brothers, Duncan, Caleb and Jakob.  And we have the best step dad in the world!  His name is Javier.  He likes to go to the movies with us and go for picnics on the mountain.  He is also a really good cook!

Javier went to the doctor today and got some bad news.  He had a lump on his neck for a long time.  And the doctor said it has now turned into cancer.  He does not have insurance and cannot get insurance for 2 months.  The doctor says he does not have 2 months to wait for insurance.  The doctor says Javier needs to have surgery and stuff in the next couple of weeks.




My Bride:
Javier has had a Pleomorphic Adenoma in his right submandibular salivary gland for around 5 years.  It has been a very large growth that has made Javier feel very self conscious for a very long time.  I, however, dont even see it when I look at him....and maybe that blind love has led to us being complacent about getting it taken care of.  

He did not have insurance when he was diagnosed with it in Mexico, about 5 years ago, and has not since had insurance.  While I was at the ENT specialist having my own swollen glands examined, I made a joke about trying to compete with Javier's tumor.  The doctor then went over and examined Javier.  In the past few weeks, he has had some very large lymph nodes appear around the tumor.  Despite not having insurance, the doctor examined Javier free of charge and ordered CT scans and arrnaged for discounted costs.  

The doctor explained to us that we do not have a couple of months to get Javier added to my insurance plan, that unless he gets surgery, chemo and radiation in the next couple of WEEKS, it will be too late, if not already too late.  The doctor said he does not know how invasive it is until he gets imaging back with results.  He explained that a Pleomorphic Adenoma, left untreated, does turn malignant and in his experience, the doctor is 99% sure that is what we are facing.  

If you are able to help, even in the smallest of donations, every cent counts.  If you are unable to financially help, please help spread the message.  And prayers are most CERATINLY welcomed and appreciated.

I love Javier so very much and cannot bear to lose him.