"This is the Air I Breathe..."

Hello, Friends,

DJ's pain continues to be bothersome and present, in spite of lots and lots of pain pump medication adjustments by the Pain Management Specialists.  Dr. Untal's staff has increased the amount of Dilaudid being delivered to DJ's chest cavity; and another drug named Bupivacaine has been added, as well.  Also, DJ has been given a little remote control which he is able to point toward the pump implanted under his skin and administer an extra "push" of the drug(s) when he experiences break-through pain.  He experiences break-through pain often, more often than the once-every-six-hours, limited-to-twice-per-day that is programmed to be released when he pushes the button.  As of yesterday, he is allowed to push the button three times per day.  Perhaps this will grant him more relief.

DJ underwent a CT scan last Wednesday, October 14, and the results are as follows: there is "extensive damage" from and "significant growth" in the mass in DJ's ribs (not surprising to me in the least - I guess that this is the primary cause of DJ's pain); there are lots and lots and lots of nodules in DJ's only lung, which are increasing in size and in number; and now (for the first time) there is a spread of the disease to DJ's liver.  This is a big bummer.

For the  most part, DJ and I both took this news in stride.  As I said, it's not surprising that the cancer is growing and spreading, considering the decline in DJ's health and well-being and the increase in his pain and fatigue.

On Saturday morning, DJ asked for a hospital bed and for oxygen (to supplement his nighttime breathing - he has been having some difficulty getting deep, full breaths at night).  I made some phone calls, a nice fairy waved her magic wand, and by that afternoon both the hospital bed and oxygen were installed and available for our use.  We are blessed beyond measure.  The Home Health - Palliative Care intake nurse came Sunday morning to interview DJ and set him up for making him as comfortable as possible.

Since the day that DJ began the clinical trial in August, he has been sleeping on the couch in our living room (mostly because our bedroom on the second floor of the house is 10-15 degrees higher in temperature than the ground floor, and DJ does not like to be overheated; also because the flatness of our regular bed is more uncomfortable than various ways DJ can position himself on the couch and using the recliner in the living room).  For the same amount of time, Caedmon and I have been camping in sleeping bags on the living room floor beside DJ.  Well, on Saturday night, DJ began sleeping in the hospital bed, and I upgraded to the couch!  :-)  Caedmon remains on the floor, but he doesn't seem to mind; and he chooses that over his own bed every night.  

The hospital bed is a blessing because it allows DJ to raise and lower his head and feet at whatever increments are most helpful.  The oxygen is a blessing because it allows his lungs and blood to be filled with what we all need - O2! Does this remind you of a lovely song about Jesus?  "This is the air I breathe…this is the air I breathe…Your Holy Presence, living in me!"  To date, DJ only utilizes the oxygen during the nighttime.

The Home Health intake nurse came to meet with us on Sunday morning; she has arranged for DJ that a Home Health Certified Nurse Practitioner will visit once per month, and a Home Health Registered Nurse will come once per week, and a Home Health physical therapist visited yesterday to encourage DJ to ambulate at a tolerable level in order to enhance his quality of life.  The physical therapist was encouraged by DJ's ability to move about; she gave him some particular exercises to utilize in order to strengthen his muscles and keep his bones strong, and she declared that she won't return unless DJ declines such that he is unable to get out of bed.  She also told us that DJ should only exercise at a level that is tolerable to him; so I am not allowed to be a "slave driver".  :-)

Except for his attendance at last Tuesday's volleyball game (8 days ago), DJ's movement and activity is restricted to trips to the restroom and medical field trips.  Medical field trips have been occurring at a steady pace, and they generally cause DJ's pain to be increased.  The travel, the sitting upright in straight-backed chairs in waiting rooms, the various positions he is asked to assume for CT scans and brain MRI's - these are all difficult and painful for him to withstand.  Otherwise, DJ remains in his bed, resting and seeking comfort. Oh - except that he and I did take a walk today!  That was the first one in a couple weeks.

DJ and I visited with our local oncologist Dr. Spillane on Monday last.  The study drug which was administered to DJ by Dr. Rosen through the UCLA has finally been FDA approved, so Dr. Spillane has access to it now.  DJ had more or less removed himself from the clinical trial, but he told Dr. Spillane that he would like to take that drug again.  As a study drug, it was called "TAS-102", but now it has a name: "Lon Surf".  I don't quite know what is the etymology of "Lon Surf", but I will do some research.  :-)  Dr. Spillane ordered the drug, which will come to us from a specialty pharmacy.  Also, since the drug was so harsh for DJ to tolerate (especially the nausea and the vomiting), Dr. Spillane has prescribed the drug at about 2/3 dose.  And DJ can choose how much and how long he wants to take it.  Obviously, the drug did not take away the cancer, neither did it keep the cancer from growing and spreading.  But we don't know what good things it may have done (or what would have occurred if DJ hadn't taken it).  So I told DJ that I will cheerlead whatever choice he makes in his treatment.  "Rah-rah-ree!  Kick 'em in the knee!  Rah-rah-rass!  Kick 'em in other knee!"  :-)

Dr. Rosen also ordered an MRI of the brain, which occurred yesterday; we await those results yet.  

My emotions have been on a roller-coaster ride of loop-de-loops.  There are times that I feel unshaken, calm, strong, peaceful, steadfast and sustained. God's grace is certainly administered to me and to us in AMAZING ways, of which you are a very significant part.  I wonder that the LORD has granted to me a particular gift of faith; trusting is very easy for me to do.  There are also times that I have felt sad and grief-stricken.  I have shed some tears. I have laughed.  I have looked into my husband's eyes and told him that he is the best thing that ever happened to me, and that I don't want him to suffer, but that we'll be alright because we have Jesus (and that it would be unbearable without Jesus), and thank you for asking me to marry you and thank you for being faithful to me for 22 years.  And there are times that I believe so deeply in my heart that God will heal DJ's body on this side of heaven, in spite of what my eyeballs see, that I skip merrily on my way with a light heart and with all sadness evaporated.  All of this in a matter of days.  I'm telling you, it's like a roller-coaster ride!  :-)

But at the end of the day, and in the pit of my belly, this is what I know with all my heart and with all my soul:  The LORD will never leave us or forsake us; God will do what will glorify God the best, and that will be what is the best for us. The LORD is worthy of our worship, and we will trust in Him with all our hearts. God is GOOD, and in that we place our hope.  We know the end of the story! "But our citizenship is in heaven, and we eagerly await a Savior from there, the Lord Jesus Christ; Who, by the power that enables Him to bring everything under His control, will transform our lowly bodies so that they will be like His glorious body" (Philippians 3:20-21).  

I read this today in a Jesus Lives by Sarah Young, and it blesses my heart: "Followers of Jesus face a glorious challenge every single day: to trust in His Love regardless of our circumstances.  We will experience many losses over the years, but the one thing we cannot live without is the one thing we can never lose - Jesus' loving Presence."  I agree, and this encourages and fortifies and comforts and strengthens my heart.

Thank you, as always, for praying for us; thank you for preparing meals for our family, for transporting DJ to his many medical field trips, for caring for our children, for texting me and calling me and encouraging me and for loving us up.  I am so encouraged by the deep and wide network of support that is embracing us.  We are resourced and blessed!  We love and appreciate you!

I am excited at how God is providing!!

Dear Anonymous x 50 (you know who you are!), and 50 other Kind and Generous and Loving and Gracious Persons, 

Thank you so very much for loving our family.  I feel humbled and grateful and a little bit awkwardly sheepish at the outpouring of love and affection that is occurring for our family via a Go Fund Me account, spearheaded by my mother's next door neighbor Patrick and administrated by my mother, and circled round and round and round the world via social media.  Oh.  My.  Goodness.  Gracious.

For the past 9-or-so months, I have used my words to rehearse faith and hope and dependence on God's provision.  My mantra has been, "I am excited to see how God is going to provide for us!"  When our clothes dryer broke last February, I said, "Thank you, God, for California sunshine that dries our clothes, and I am excited to see how You will provide!"  And my sister and brother-in-law purchased a new washer and dryer for me.  And when the county of San Luis Obispo sent me a fairly large supplemental tax bill, I said, "I am excited to see how the LORD will provide!"  And after a few phone calls, my mortgage company sent me a check of the excess in my impound account, which covered the bill exactly.  And when I knew that DJ's employment and regular pay-check would be coming to end, I said, "I am excited to see how God will provide!" And the Paso Robles Public School District hired me full time with medical benefits.  And when our family car died, I said, "Thank you, God, for this clunker car that DJ bought for Alex to learn to drive, that carts our family around town, and which just last week I grumbled about.  :-).  And I am excited to see how You will provide!"  And friends have been so gracious to transport DJ to many, many doctor appointments while I work, and other friends have loaned me a reliable vehicle when I needed to drive farther than Templeton.  And then my mother offered to give her Toyota Camry to me, but then she told me that something bigger was occurring and how did I feel about a Go Fund Me account for us.  And I felt awkward to be advertised as such and to be the recipient of such generosity, but the LORD said to me, "Isn't exciting how I am providing for you?!?".  :-)

Wow.  I am overwhelmed by God's mercy and grace, expressed to us through you.  Thank you, thank you, thank you.

And for the past months, I have not been able to forget about the time when Jesus tried to escape the crowds, but they followed Him to a remote place, and He spent the day teaching and hanging out with at least 5,000 of them, and by the end of the day they were hungry but there was no restaurant or grocery store or otherwise provision in the vicinity, and the disciples were anxious and cranky - but Jesus calmly said, "Whatcha' got? Five loaves of bread and two fish?  Let's thank the LORD for what we have, then let's pass it around."  And 5,000 (or more) persons ate to satisfaction, and 12 basketfuls of food were left over (don't throw out the leftovers!), and Jesus showed us the glory of God's provision.  And it has been such a blessing to my very own soul that I have not one time felt afraid or anxious about the decrease of income or the loss of DJ's ability to work or anything of that sort.  I have experienced such a peacefulness in my belly that is excited to see how God will provide!  

I am so very grateful for your part in our story.  Thank you.

Now that I have expressed my gratitude to you, I will give you an update about My Love.  I am happy to report that he is eating more and taking in more calories than he did the week of September 22, immediately post-op.  I am sad to say that DJ's pain has continued to increase, in spite of the pain pump being implanted into his body 2.75 weeks ago and even though the pain medication being delivered has been increased by 100 per cent, two times in the past week or so.  DJ has another appointment with the pain management doctor on Monday this coming, and I hope that Dr. Untal will dial up the med again. The other bummer for DJ is that the Dilaudid medication causes digestive difficulties, particularly in the form of constipation.  The nausea of two weeks ago is gone for the most part.  The other part is that DJ hurts and is digestively uncomfortable.  But he does not complain.  He does not speak very much conversationally, and he does not move very much away from the couch (I haven't even been able to coax him into a walk since last Sunday evening); but he does not complain or act angrily or unkindly to those of us with whom he shares space.  He just carries on.  What a guy.  :-)

It is becoming more and more difficult for DJ to attend his volleyball practices and games, but he is blessed with fantastic assistant coaches and with a groovy team of Lady Bearcats who carry on.  Here is a photo of (a Selfie of myself, which includes in the background) DJ giving his team some encouragement and instruction at a time-out of a game that he was able to attend on September 29:

Next up: a CT scan of his chest and pelvis on Wednesday, October 14 and an MRI of his brain on Tuesday, October 20.  I am very interested in the results of those scans, in that I speculate they will determine the next steps of treatment (whether or not DJ continues with the UCLA clinical trial, ???, et cetera ???).

In family news, Caedmon is excited to have begun Cross-Country with his school Georgia Brown Elementary.  I snapped this photo on the morning of his first Cross-Country meet, October 2, on which he double-represented - a Tigers jersey for his school, and 12th Man socks for Blue Friday (Go, Hawks!). Caedmon is more-or-less settling in to his 5th grade year of school; he just does not appreciate the amount of WORK that is given to and expected of him. Thank you for praying for our kids!

And that's my story for now.  Thank you for loving us!  We love and appreciate you!

Nine Things To Tell You

#1 - Were you so excited and happy that the Seahawks shut out the Bears on Sunday, 26-0?  "And there was great rejoicing in the land!"  Go, Hawks!  Next up: Detroit Lions at Seattle Seahawks, to be featured on Monday Night Football - yahooo!!  We will WIN, and it will be FUN and exciting!  (THANK you, Katie!)

#2 - Happy news for DJ Bigelow: the pain pump seems to be helping DJ's pain to be lessened.  Today he told me that his pain was at a 3 (as compared to what I guess was a 9.75 or so for the past weeks).  And the nausea seems to be lessening, as well (perhaps because he hasn't ingested chemotherapy for almost a week?  And perhaps because the surgical procedure and the general anesthesia are almost 10 days in the past?  And perhaps due to a new prescription - see #5 below).  And DJ is taking in more calories this week than he did last week. These are positive reports!

#3 - Current symptom: DJ's pain is "low" and his nausea is "low", but his energy levels are also very, very low.  I'm not sure if this is due to a lack of food and exercise, and/or due to the fact that chemotherapy is harsh on the body, and/or due to mental and emotional stress.  Perhaps all of these factors are affecting DJ's energy levels.  He has difficulty getting up the gumption to do much of anything; but he also has a bit of trouble getting a good night sleep.  I am yet hopeful that as this next week passes during which DJ is NOT ingesting the chemotherapy drug, and as his nausea continues to subside and his calorie intake increases, and perhaps if his physical activity increases as well, that his energy (physical as well as mental) will also increase. 

#4 - I am married to a retiree: DJ's most recent day of attending and performing work for the Paso Robles Police Department was August 12, the day before he began the clinical drug with the UCLA.  Since then, he has been incapacitated with pain and illness and not able to work.  And as of today, October 1, DJ has been medically retired from the police department.  This was not a surprise, actually - we had been expecting this to occur for most of this calendar year, and it was communicated to DJ on June 30 that the City of Paso Robles would apply for medical disability on DJ's behalf.  This is why I am SO GRATEFUL that I have been granted full-time employment and medical benefits with the Paso Robles Public School District!  I am also very grateful to the City of Paso Robles for their care of DJ - they have accommodated him and employed him and insured him for quite a time during our cancer journey. God's grace is abundant, and the City of Paso Robles is one of the vehicles of God's grace!  But as of today, DJ is retired.  :-)  He has enjoyed two exciting careers - youth ministry and law enforcement.  I wonder what our next life adventure will be.  

#5 - DJ attended an appointment at the UCLA with Dr. Rosen on Monday of this week.  Dr. Rosen prescribed the Sancuso patch in attempt to manage DJ's nausea more effectively, and the next step in DJ's treatment is diagnostic.  The protocol for the study drug TAS-102 is that the subject undergo a scan after 2 cycles of the drug before determining continued eligibility in the study.  Rather than traveling to Los Angeles to undergo the scan (8 hours round trip of riding in a car is unpleasant for DJ to endure), he has requested to receive scans locally.  So Dr. Rosen has connected with our own Dr. Spillane, who has ordered the scans (a CT as well as an MRI of the brain - Dr. Rosen wants to know if there is fluid there that is causing DJ's excessive nausea); and now we wait (perhaps for insurance approval?) to be scheduled with our local Radiology Diagnostics.  I am VERY interested to know the results of those scans, and to know how Dr. Rosen and/or Dr. Spillane will recommend the next steps of DJ's treatment.  Is the cancer shrinking?  Is it growing?  Is the drug successful?  Is it worth the misery that it causes?  I do not know the answers to these questions.  But the LORD knows!  And so I feel patient and peaceful to wait until what we need to know is revealed to us.  Isn't it fantastic that we don't have to worry?  Trusting and resting is so much better!  I highly recommend it.  :-)

#6 - DJ is scheduled for one more post-op-10-days, wound care appointment with Pain Management Dr. Untal tomorrow morning.  Miller Newlon is signed up to transport DJ to that appointment, and DJ is hopeful that he will have the last of the staples removed from his abdomen (half of them were removed last Tuesday at his 7-day post-op, wound-care appointment); and he is hopeful that the doctor will release him to take a shower!  He has not been allowed to immerse his body in water since last Tuesday's surgical procedure, and he wants to take a shower!  I can sympathize; "Cleanliness is next to godliness". 

#7 - Holly Bigelow's emotional state:  I am a roller coaster.  Sometimes I feel sad and tired; sometimes I feel happy and perky.  Sometimes I am cranky.  Sometimes I am cheerful and optimistic.  I am so glad that underneath are God's Everlasting Arms.  I am so happy that I know the end of the story!  :-)

#8 - Alexandra, Brooke and Caedmon: life as usual.  Alex - grand and groovy.  Brookelow - almost healed of her ankle injury, returned to volleyball this past week.  Caedmon - happy to be participating in Cross-Country and to have been invited to once-per-week GATE meetings at his school.  God's grace is abundant and good.

#9 - I'm so sorry that I have offered no photographic illustrations!  Are you weary of all these WORDS with no PICTURES?!??  I will work on that for next time.

The end.  Thank you for loving us.