Love

Prone

Jon went into Kaiser yesterday for lab work. Following the labs, he received a call from a doctor inquiring about his well-being. Jon was quite moved by this gesture...his white count was 1.1 and the doctor wanted to make sure he was doing Ok. Today we spent five hours at Kaiser preparing for the next leg of the race (radiation therapy). Jon felt better than yesterday, but his white count was surprisingly .8

This number suggests that he reached nadir today (Day 11). This would be the same day/blood count as his last chemotherapy cycle. We are praying that he comes out of nadir without fever...

The radiation planning meeting had Jon extended in a prone position as the radiation oncologist (Dr. Girvigian), a resident, a radiation tech, and a nurse evaluated and inked his rear end. Jon described the experience as both humorous and humbling.

Jon's CT scan measured the tumor as 3.48 x 2.5 x 2.9 cm. This is smaller than his 10/9 MRI measurement of 4.5 x 3.3 x 2.7

And...necrosis (death of cells or tissue) was evident in the CT scan! This is great news and proves chemotherapy is working.

Radiation therapy will commence Tuesday December 11th. Jon will go to Kaiser five days/week for 25 days/5,000 CyG. Most of the side effects will be local not systemic. Jon will also get his first tattoo--a few small dots around the tumor.

While on disability, Jon has taken on eating as his new full time job. Today he managed to consume enough calories to compensate for a week of poor appetite. Those that know him well will not be surprised that he excels at this skill....

We are blessed by the love and support that continues to pour out from our friends and family...and I am especially grateful for the humor that seems to ride with us on this journey...We are finding laughter in all sorts of sterile places...this is grace.

Riding the Wave

This photo was taken on 11/19/12. The chemotherapy nurse, Olga, is starting the meds. The red bag is Doxorubicin (referred to as "candy"). It can burn the skin so the nurses wear protective gear when administering...The clear bag is Ifos. The Ifos. runs four hours per day; and the Doxorubicin runs continuously for 72 hours.

Today Jon is pushing against his emotional/physical threshold. He came down with a stomach bug last night that ripped through our home earlier this week. This "bug" combined with the chemo effects has brought him low...

Sickness aside, he was overwhelmed with gratitude this morning for our neighbor, Melissa Burton; The Cycle Annex; and the fearless Ride for Jon participants...

Dear Fearless Riders,

I really don't have adequate words to say thank you for this ride on my behalf. It brought me to tears this morning as I thought of you all saddling up today and tomorrow at the cycle annex for "Ride For Jon." For those of you I know and I those I don't know, you inspire me. For now, you pull me up this steep climb, but I will be back in the pack soon. From my heart to yours, thank you.

With Much Hope and Love

Jon

Here is the 7am group with Master Teacher Syd Levitt!

Interconnected

Jon will come home from the hospital at 5pm today. Last night he doubted he could finish this round... but the morning brought renewed strength. We are grateful...
There is a young man in his thirties undergoing chemo for Ewing's Sarcoma (at Baldwin Park where Jon is being treated). He is receiving a milder dose/cocktail but his body is not handling it well. He has been in the ICU for a month...He is held in our prayers...Seeing Jon on day two of this round, I was reminded how "lethal" chemo is....My sister, who has worked in various cancer research projects, describes the aura as "ghost-like"...the body takes a stroll near death's door. It is a saving grace that Jon is not "aware" of the full effect of chemo...
This week I was inspired by a group called Cycle For Survival started by a woman named Jennifer Goodman Linn. She had a "rare" sarcoma and spent her last years fighting to raise money for orphan cancer research. Fifty percent of cancers are considered "rare". (https://www.facebook.com/cycleforsurvival).
On this Thanksgiving day, we are finding the strength to both bow and dance. If you are so inclined, please dance with us today in celebration of our abundance...Our theme song is "Shake it Out" by Florence and the Machine...

Round II

Jon starts round II of chemotherapy tomorrow. He will spend 72 hours in the hospital at Baldwin Park returning home on Thanksgiving. Yesterday Jon learned that straight razors are banned in barber shops (gone are the days of Jayber Crow); so he had to rely on a DIY method. He consulted a local "master shaver" and managed to successfully shave his head without a nick.

Jon is mentally ready to tackle the next few weeks and is focused on his daily treasures. Jon's bone scan was clear and his eyebrows have yet to fall out. (Insert humor.) These are two things he is extremely grateful for... Our friends at the Cycle Annex have organized a "Ride for Jon" this holiday weekend. http://rideforjon-eac2.eventbrite.com We are excited to have our community "sweat it out" in Jon's name.

Shrinkage

The oncologist felt the "mothership" yesterday and is certain that it has SHRUNK. She estimated 3cm. This is great news given many adult soft tissue sarcomas do not respond to chemotherapy. We are on our knees. Jon also had his portacath inserted. This is a "button" placed under the skin near the collarbone. There is less risk of infection using the portacath to administer chemo verses a picc line. Ironically, Jon feared his wound was infected yesterday evening and made a quick trip to the ER. All is well--he just has an allergic reaction...Jon's oncologist noted his Alkaline Phosphotase (ALP) was a bit high so she ordered a bone scan. It is likely nothing to worry about--his numbers were elevated but not "through the roof". HIgh levels of ALP can be an indicator that the cancer is in the bone. He will have the bone scan tomorrow. Again, it is a just a thorough precaution...On a side note, Jon's hair really wants to hang on--Dr. P said it will will fall out in the next two weeks. My editor requested that I omit a portacath photo...

The Emperor of All Maladies

Jon came home from the hospital saturday afternoon feeling a few degrees from normal. He went on a 90 minute bike ride less than 24-hours later. This is the face of cancer treatment that we did not imagine: the juxtaposition of valleys and normalcy. Jon's white count went from 1.5 to 9.3 in fifteen hours. This is partially due to Nuepogen, the drug that he has been injecting into his stomach for a week. The second night in the hospital (as Jon waited for his counts to rise), he experienced severe bone pain (a side effect of Nuepogen). Given he has never felt this type of "deep pain" before, his imagination was left to its' own devices. He did not know if his counts were rising or if he was descending....and he fought all night with the mental fear. On the day Jon announced his diagnosis at church, a wise sage and friend whispered to him, "the fear is the hardest part". This is true to Jon's experience. I just picked up the book, The Emperor of All Maladies: A Biography of Cancer written by Siddhartha Mukherjee. Written by an oncologist, it weaves science with the history, of cancer, patient stories, and social context. Cancer, in many ways, has a "personality"--the evolving non-conformist that "exploits the very features that make us successful as a species and an organism." Jon will have a chest catheter inserted this week for round 2 of chemo, which begins Monday November 19th. He will also see his oncologist, Dr. Padmanabhan, to assess the "mothership".

Nuetropenia

Jon was admitted to the hospital last night with a moderate fever (101) and a white count of .8. He will remain in the hospital until his white count reaches 4. (This morning it was 1.5.) Certain "strong" chemotherapy drugs dramatically lower the number of white blood cells in the body. Running a fever when your white counts are low is a common side effect of chemo (nuetropenia). However, there is always a risk of infection when there is a fever; and given Jon's body has no defense against infection, he has to be careful. We walk a fine line with this blog...we want to give details for our friends and family yet also protect a few "dignities". Chemo is so "messy" that it is often hard to navigate this line. Given I am the hands giving voice to Jon's recovery, I am careful to be honoring to his privacy. He is having a hard time with a number of side effects; and the cocktail of meds has its own bed. All that said, he is hopeful that the gluteal tumor is palpably smaller. After one more round of chemo, a CT or MRI will be used to determine if/how the mass has decreased.

Nadir...

Jon is feeling very discouraged--he turned a corner last night into what he presumes is his actual "nadir". He is 10 days out from the onset of chemotherapy, and according to most estimates, his blood counts are lowest now. Because he is running a fever of 101, we are heading to the hospital. Please pray for Jon's physical and emotional health.

Community

Today Jon attended his first yoga class for cancer patients at the Yoga House in Pasadena. This free class is available every wednesday from 11:00-12:15, and is a great service to the community. Jon is feeling better every day, and has even requested that his second round of chemotherapy begin next week on Wednesday November 14th (five days ahead of schedule). His blood work on November 13th will determine if this is possible. He is suffering a few side effects from treatment, but the nausea and fatigue are waning. He is even feeling well enough to attend (but not participate in) the Catalina Eco Marathon this weekend. Michelle Speers, a local trainer and friend, will be running the marathon alongside the YMCA running group and myself. Everyone will be carrying Jon in their stride. Jon wrote a very moving e-mail to his former track coach, Rod Wortley, thanking him for the mental/physical training that collegiate track and field mandated. He is acutely aware of how his athletic history shapes his stance. Both Jon and I are extremely moved by the ineffable human spirit present in endurance races. There is something holy that words fail...We do not know God's plan or how our days will unfold, but we rest in the fact the Spirit is with us...

Coming Up

A collegiate swimmer fought a battle with Synovial Sarcoma from 2004- 2006. In reading his experience with chemo, the doctors were amazed that his blood levels would rebound miraculously overnight. He was an exceptional athlete and this helped him tolerate chemotherapy much better than most. Jon Dephouse is in this camp. It looks like nadir hit Saturday evening...and it has been uphill since then. For those of you unfamiliar with chemotherapy, there is a distinctive parabola of dropping to the bottom of the curve and rising again. The hard part is sinking into the curve unable to see the bottom. Sunday was better than saturday, but he waited with baited breath. Today Jon walked a mile to my office and drank a tea from the coffee shop. Yes--it may be a little soon to be walking about in public, but it was energizing to leave our bungalow. Jon shaved his head preemptively this morning...and looks more like an ironman than a "chemotherapy patient". He is resting in this paradigm. Again, we are so moved by the outpouring of love from our friends, family, and anonymous well-wishers...Your prayers, support, and community hands are the backbone of Jon's recovery. He reads every comment and every text--even if he can't respond... and extends a tear-filled "thank you".

War

From the blogs and accounts we have read, the chemo experience is personal. It depends on drugs, dosage, and overall health of the patient. Jon began chemo Monday October 29th in great health...but in six days he has been reduced to something so "other". We both imagined chemo recovery to look like a bad case of mono...this is another animal. Dr. Girvigian called this afternoon and reminded Jon that he received the maximum dosage of chemo meds and informed him that some patients can't repeat a round of Ifosfamide due to the intensity. In other words, Jon is doing great. Jon is injecting Filgrastim into his stomach once daily to decrease the risk of infection and taking Zofran for nausea....but even with the meds, the ride is rough. Please pray for endurance and peace... and to our family and friends, please understand that Jon is not able to text/answer calls at this time. All of his energy is channeled into Breath and recovery...

Home

Jon is home now and feels "out of himself". The fatigue and nausea are increasing, but Jon is relieved to be home. He managed to eat some delicious soup, mushrooms, and frozen keifer...Thank you dear friends...Caleb and Josiah were thrilled to have him home...The coming week will be tough as Jon's immune system hits "nadir", but he is looking into the big picture. Hair loss will likely begin at the end of next week....We keep whispering..."give us strength for this day"...Again, we are so grateful for the outpouring of love... from play dates to groceries on out steps, we are humbled...On a side note, Josiah can not walk on his leg, but the X-ray appears clear...This "fortuitous" sequence of ER/doctor visits in the last 48 hours will become either a story we laugh about or a country ballad....