Two Thoughts and an Update

Good evening,  Reader.  Thank you for loving us!  :-)

I have thoughts, and I have an update:

Thought Number One - The Big God Story:

Cancer is not our ultimate reality; keeping DJ alive and healthy is not our ultimate goal (although we really, really desire and pray toward that end); circumstances are not our total story.  God's eternal purposes being accomplished in the universe, and coming deeper into intimate knowledge of the LORD, and allowing the character of Jesus Christ to be formed in our lives, and clinging to the hope of our forever lives with God: this is our part in the Big God Story.  

I wonder that the LORD has something really significant for us, in this chapter of our part in the Big God Story.  Whether it is sensational and fabulous to the human eye, whether or not you will see it, whatever it may be: I have an inkling that God is going to do something really important and life-changing in our hearts and in our lives.  I am hopeful and expectant and curious for how we will be changed as God's Story is written further in our lives.

Thinking this through today, I remembered a poem that I was given years ago, "The Thorn", by Martha Snell Nicholson:

"I stood a mendicant of God before His royal throne
And begged Him for one priceless gift, which I could call my own.
I took the gift from out His hand, but as I would depart, 
I cried, 'But, LORD, this is a thorn - and it has pierced my heart!
This is a strange and hurtful gift which You have given me.'
He said, 'My child, I give good gifts, and gave my best to thee.'
I took it home, and though at first the cruel thorn hurt sore,
As long years passed I learned at last to love it more and more.
I learned - God never gives a thorn without this added grace:
He takes the thorn to pin away the veil that hides His face."

It is true that so often the pain and discomfort and suffering God allows are exactly the ways by which I am granted and blessed with a deeper experience of God's presence and power and love and grace.

Here is a selection from a recent daily reading (August 20) of "Jesus Calling" by Sarah Young that speaks so specifically to me and to our family:

"I AM a God who heals.  I heal broken bodies, broken minds, broken hearts, broken lives, and broken relationships.  My very Presence has immense healing powers.  You cannot live close to Me without experiencing some degree of healing.  However, it is also true that 'you have not because you ask not'.  You receive the healing that flows naturally from My Presence, whether you seek it or not.  But there is more - much more - available to those who ask.

The first step in receiving healing is to live ever so close to Me.  The benefits of this practice are too numerous to list.  As you grow more and more intimate with Me, I reveal My will to you more directly.  When the time is right, I prompt you to ask for healing of some brokenness in you or in another person.  The healing may be instantaneous, or it may be a process.  That is up to Me.  Your part is to trust Me for the restoration that has begun.

I rarely heal all the brokenness in a person's life.  Even My servant Paul was told, 'My grace is sufficient for you', when he sought healing for the thorn in his flesh.  Nonetheless, much healing is available to those whose lives are intimately interwoven with Mine.  'Ask, and you will receive'."

What do you think about this?

Thought Number Two: The Smaller Human Story:

Within the smaller scope of our current human existence, it seems that we have come to the end of what insurance will pay for.  Our insurance to this point has been happy to pay for mainstream medical, anti-cancer care:  surgery, chemotherapy, radiation, et cetera.  Taking part in a clinical trial may even fall within the boundaries of what insurance (or a sponsor) would finance - and I am still doing some research about clinical trials and the opportunity for a cure that they could offer to DJ.  But for the most part, we have come up to what seems like a wall, the end of the road for what insurance covers.  

But!  After this week's research and appointments and information-gathering and knocking on doors, it seems to me that the "wall" that looks like a big roadblock actually has lots and lots of doors in it!  Doors that insurance may or may not escort us through, but doors nonetheless!  In fact, there are so many doors and opportunities and things to consider, I pray that God will shut the doors that are not right for us and lead us to and through those that are His will for us.  I feel very hopeful for the alternative, non-mainstream but potentially successful opportunities available to us.

Brass-Tacks Update:

On Wednesday of last week, DJ and I met with a doctor at our local, downtown Paso Robles Salus Integrative Medical Center.  Dr. Kirkpatrick spent almost 90 minutes with us, listening to DJ's story and filling our heads with lots of ideas!  He has prescribed to DJ a particular protocol, which consists mainly of a high-dose (up to 50 grams) Vitamin-C drip (administered intravenously), several other supplements to boost the body's own ability to heal itself, dietary changes in attempt to slow cancerous growth and to minimize pain (which DJ still experiences - probably because a tumor is present on his 8th rib), and even a low-dose pharmaceutical whose intent is to increase the natural killer cells in DJ's body.  Salus Integrative Medical Clinic is kitty-cornered from the Paso Robles Police Department, which means that feasibly DJ could walk from work to take an IV treatment and walk back (if he happens to return to work in the near future).  This makes me so happy and excited and hopeful - to have "found" an integrative clinic in our own town!  

On Wednesday afternoon, DJ and I met in Santa Margarita (25 minutes south of Paso Robles) with a holistic healer/alternative medicine gal, Wendy McKenna.  Wendy looked at the protocol that Salus Integrative has suggested, and she told us that that is a good start, it will help DJ to feel good and to perhaps attain to a groovy quality of life; but that she believes DJ needs to be more aggressive in ridding his body of cancer.  Then she spent 40 minutes filling our heads with more and more ideas - some non-coventional, outside of the scope (at times) of FDA-approval or California-state approval, some "mainstream" anti-cancer suggestions (she thinks we should consider UCLA's or The Cancer Centers of America's clinical trials), and lots and lots of other opportunities and possibilities to research and consider.  Whew!  My head felt BIG!  Well, I mean that there was a lot of stuff in there by the end of Wednesday!  

On Friday morning, DJ and I participated in a short phone consultation with one of the doctors at Issels Integrative Oncology Clinic located in Santa Barbara.  They believe that DJ is a candidate for their integrative protocol, specific to oncology (Salus Integrative Here in Paso Robles is not specific to cancer); their set-up is approximately 3 weeks of immunotherapies and other integrative therapies at the out-patient clinic in Santa Barbara with an additional week of treatment at their hospital in Mexico (think, "non-FDA-approved-but-perhaps-successful-at-curing-one-from-cancer" :-).  Issels is something we want to explore more, so we have an appointment this coming Wednesday to visit the clinic and speak more with their practitioners.

So.  In the meantime, I continue to pray that God will do a work in our hearts, drawing us nearer and nearer to the Divine Center that is Jesus Christ; and that God will guide us to and through our next steps; and that, if it is according to the LORD's will, cancer will leave DJ's body and never come back.  Also in the meantime I continue to experience such a deep peace and happy hopefulness, I can't explain how lovely and beautiful it is except to that say that only the LORD could give it to me.  (And sometimes I feel sad and tired.  But most often I feel hopeful and cheerful and peaceful and grateful.)

And that's what I have for you today!  Thank you for reading and for caring and for loving and especially - thank you for praying!  God's grace is administered to us through your prayers! 

Here is a photo of my mom, "Grammy Catherine" and her husband Kevin when they visited us last week.

Post-radiation

Happy Monday, You Who Love Us -

It was a busy time last week, as DJ took radiation at the UCSF and traveled back and forth from the central coast so that he could engage with his volleyball team.  It was very tiring for him, but coaching volleyball is such a blessing because it is a distraction for DJ.  I contend that it is an excellent source of moderate but necessary physical movement and social and mental stimulation.  Hooray!  DJ seemed slightly fatigued and nauseated at the end of last week (the radiation treatments ended Wednesday).  The nausea seems to have mostly passed now, he is still somewhat fatigued, but unfortunately it seems that his pain is beginning to slightly increase.  He is mostly quiet these days.

Here is a photo of Tom Milder visiting DJ; he brought DJ a freshly-squeezed juice and they watched football for a few moments together.  I am sad that both our teams lost (although I am more sad that the Seahawks lost than that the 49'ers lost).

This coming week, we have three scheduled appointments with "unconventional" doctors and practitioners:  on Wednesday we plan to meet in the morning with a local integrative doctor, and we plan to meet in the afternoon with a local naturopath/holistic healing practitioner; and on Friday morning we have a phone consultation with a doctor at the Issels Integrative Oncology Clinic in Santa Barbara.  I pray that by this time next week, DJ will have a sense of which direction to take.  "Lead us, LORD, in Your righteousness..." (Psalm 8:5).

Thank you for praying for us and for loving us!  

A Song in My Heart

Dear Reader, 

Will you please access "I am" by Crowder on YouTube and listen to the song?

 www.youtube.com/watch?v=cH_LLGiE0f0
  
"There's no space that His love can't reach - There's no place where we can't find peace - There's no end to amazing grace.  Take me in with Your arms spread wide - Take me in like an orphan child - Never let go never leave my side.

'I AM holding onto you - I AM holding onto you - in the middle of the storm I AM holding on - I AM'."

Oh.  My.  Goodness.  Gracious.  I love this song!  And do you want to know why I love it - besides the beautiful lyrics and the catchy rhythm and the heart of passion that David Crowder has for the LORD?

I love this song because it's not about me.  When I first listened, my toes were tapping and my heart was singing, but I thought - "This is slightly ego-centric; it should be 'You are holding onto me'."  But this morning I watched a short video clip in which David Crowder explained the song-writing process; he told me that he and his co-writer spent time thinking about God's Name, Who He is, and that God has expressed Himself to us with the name "I AM".  I AM - ever present, closer than our breath, never away from us, further expressed in the nearness of God through Jesus Christ, Emmanuel.  "The Creator of the universe has given us access to Himself...He is holding us in His hands much more intently than we could ever hope or dream."

And so I LOVE this song - because the "I AM" is not me.  The I AM is the LORD, holding onto me.  And to DJ.  And to our children.  And to DJ's family.  And to you.  And to you.  And to you.  

"Love like this, o my God to find - I am overwhelmed what a joy divine - Love like this sets our hearts on fire.

'I AM holding onto you - I AM holding onto you - in the middle of the storm, I AM holding on - I AM'.

This is my resurrection song - this is my hallelujuah come - this is why it's to You run - There's no space that His love can't reach - There's no place where we can't find peace - There's no end to amazing grace."

Oh, my heart is singing today!  

DJ has been in the Bay Area for most of the time since Sunday evening, and I anticipate his return this evening - hooray!  The radiation treatments are causing him to feel fatigued and nauseated and ill, pobrecito :-(.  Thank you for praying for Him.  Please don't stop!  I am on my way to work just now, but soon I will post an update on what is happening with him.

In the meantime, the great I AM is holding on to you! 

PET/CT scan results

Greetings, You Who Love Us!  Thank you for loving us!

So the surgery that DJ received on July 18 was very helpful to him at relieving the pain of that tumor that grew so quickly and ate away at his ribs and bothered his nerves.  The post-surgical pain he experienced as result of being cut into and having ribs removed from his body was less pain than the tumor caused - and that is a happy thing!

Unfortunately, a few weeks after the surgery, DJ's post-surgical pain seemed to change into another type of pain.  I noticed that his need for the pain meds (acetaminophen and ibuprofen, over-the-counter drugs) was not diminishing as I expected it to.  He seemed to be healing fantastically from the surgery, but he spoke of a "rolling" pain, something different than post-surgical.  He has not been extremely explicit in explaining the discomfort to me, but it was suspicious.  

When we visited Dr. Gottschalk (UCSF radiation oncologist) on August 19, I was happy that he ordered another scan for DJ, a PET/CT which occurred last Thursday, August 28.  We've received the written report of that scan, and it seems once again that DJ is so attractive and desirable, tumors just cannot stay away from him.  :-)  The pain he is experiencing now is most likely due to a hypermetabolic (which means "quickly reproducing") mass close to his 8th rib, right next door to the 6th and 7th ribs that were removed on July 18.  Also, the two little nodes that lit up a July 3 PET scan are now measured as one mass, 2.6 cm in size (close to one inch), near to his esophagus.  Also, some other teeny, tiny spots (5 mm) are presenting themselves on his left lung - which is DJ's only lung.  (Sigh).  This is a bummer.  None of these masses have been biopsied and diagnosed as malignant cancer, but no one thinks otherwise.  The cancer has continued up to this point to metastasize and grow more rapidly - that's why it's called "cancer"; it's unlikely that these new growths are benign.

Dr. Gottschalk collaborated right away with Dr. Ko (GI oncologist) and Dr. Theodore (DJ's surgeon); and it seems that DJ is coming to the end of conventional treatments available.  Dr.  Gottschalk does not want to start burning DJ's only lung with radiation to the little lumpy bumps, Dr. Theodore does not want to perform surgery, and Dr. Ko still does not recommend standard GI chemotherapy (which DJ does not want to take, in any case).  DJ and I visited yesterday with Dr. Gottschalk at the UCSF, and DJ was given the first of five radiation treatments to the surgery site - which is now the site of another tumor.  He is on his way at this early-morning moment to San Francisco to receive radiation treatment number two, and he is scheduled for 3 more treatments on Monday, Tuesday and Wednesday of next week.  We asked Dr. Gottschalk yesterday why he is prescribing only five, rather than ten treatments; and his reply was that since there are multiple tumors and the cancer keeps metastasizing so quickly and so much, it's not worth it to be super aggressive (that is my paraphrase of Dr. Gottschalk's reponse).  Which I interpret to mean that radiation to the site is merely symptomatic treatment now.  He didn't say in this exact sentence, "There's nothing more we can do", but that is what we infer.  (On a side note, he did give us the opportunity to ask questions; but we were in a super hurry to get out of that town and return to Paso Robles so that DJ could be present to coach the first volleyball game of this season.  As we drove home, I thought that I could ask him, point blank - "What do you anticipate will happen to DJ's body now if these multiple tumors continue to grow and spread?"  Maybe I will telephone or e-mail his office.  Maybe I won't.  :-)

The only recourse that the UCSF team are really giving to DJ is to participate in a clinical trial - that means to be a guinea pig for new drugs that are being developed, in hopes that something new and wonderful will work for your own disease and will be made available for others in the future.  I am going to do some research on clinical trials, but to this point, DJ is not interested.  I agree with him.  What he is interested to do, and I am pleasantly surprised, is to pursue non-conventional alternative treatments.  He has spent some time already looking into a clinic in Arizona that intravenously administers high-doses of vitamin C as anti-cancer therapy; and I am researching a clinic in Santa Barbara that offers several different anti-cancer immuno-therapies. Will you please pray that we will be unattracted to anything that is a scam; and that if God's grace prescribes, we will be led to something unconventional but successful?  

The best part for me so far regarding these new developments is that my heart continues to feel so very peaceful.  Between DJ and me this week, there has not been "freaking out" or panic or hysterics; we seem to be facing the grimness of the situation with calmness and hope.  That's not to say that we are emotion-less; well, DJ might be :-) (Ha-ha, that was a joke!)  I just mean that the tone of our household hasn't changed, and we keep moving forward.  I confess that I do lie awake in the night at times, my mind busy; but I just continue to lift it all before the LORD and to sing songs of worship and to remind myself of what is true - the LORD will never leave us or forsake us; He is working all things for His glory which is our good; "God is intensely concerned with forming the character of Christ Jesus in us" (that's from the book I'm reading "A Path Through Suffering" by Elizabeth Elliott) - and I continue to recite the scriptures to myself and to pray and to read "Jesus Calling" and to rehearse my faith.  And my only guess is that the God of peace is blessing my soul with the peace that passes understanding.  This morning as I lay awake at 2:30 am, I said to the LORD, "Well, God, I've been praying Isaiah 26:3 - why should I be surprised that You are answering my prayer?"  :-)

Okey dokey, I've got to log off this computer and go awaken the children and prepare for the day.  Because "This is the day the LORD has made; we will REJOICE and be glad in it!"  And because Jesus Christ is at the right hand of God in heaven, making intercession for us.  And because I have the hope of eternal life in the presence of the LORD when life on this earth is over.  And so this day is important!  And it's also important that I take a shower now!

Thank you for loving us!  May the LORD bless you indeed!