YMCA Celebration

Jon and I have worked at the South Pasadena YMCA since 2006 (with a few brief hiatuses)! The YMCA has been more than a place of employment, it has been a place where we truly built community. It is a place where members rally together for morning runs, road races, hikes, classes, family fitness, camps, etc.

Two years ago, I started teaching a 5:30 am interval class. It was a new class and quickly developed a cult following (smile). After a few months, one of my faithful students shared with me that our class was giving him more than a workout. This class "community" was part of his healing--he had lost his 10 year-old son less than two years prior to a neuroblastoma. An integral part of coming out of his depression was stepping into this fitness class. Months later, a group of us from the 5:30 am class accompanied he and his wife at a St. Baldrick's pediatric fundraiser. We watched him hold a picture of his son, Abhay, in his hand as his head was shaved...

Words fail to communicate the tenderness in this experience...


Because the YMCA is a place of generosity and love, our friends and fellow instructors organized a week-long fundraiser to celebrate the end of Jon's cancer treatment. Hundreds of people bought shirts proclaiming "Dephouse Love" and wore them to fitness classes in Jon's honor. It was beyond humbling....

 This week we mulled over the notes, cards, and anonymous well-wishes and were overwhelmed with gratitude.  Friends we have known for years and strangers we have never met extended their hands in support...

The hardest part for Jon is integrating his old "life" with the fact he has/had cancer. There is no "evidence of disease", but he has to live with the treatment effects and the pending quarterly scans..It isn't something he can neatly tie in a box and "move on from"...

Jon is planning to use the funds from the YMCA fundraiser to ride 500 miles with the Pablove foundation this fall. http://www.pablove.org/pablove-across-america/

This cycling event raises money for pediatric cancer research and family support. This ride will be a chance for Jon to integrate his love of endurance sports with his cancer reality. We are are both open-handed to the ways in which Jon's story/life may serve other kids and families....and we are so grateful to our YMCA family for making this ride possible...

And a very heartfelt thank-you to our dear friend, Michelle Speers, for organizing the event....a lot of hands made it happen, but it was Michelle's heart that brought it together...love....love....

Clear

Chest scan is clear!

VAC and Chest Scan

VAC Wound Therapy

Coming back to this blog takes an exhale. It would be nice to package the last six months in a trash bag on the street corner. However, the residual affects of treatment, both physical and emotional, are slow to vacate.  When Jon had his primary tumor excised, a rather large chunk of muscle was removed. In the hollow, a seroma (a pocket of clear serous fluid) began to develop. This seroma fluid found a way to vacate the wound site; and latent infection began to develop two months after surgery. A compromised immune system (chemotherapy) and exercise also played a role. None the less, Jon had a VAC (negative pressure wound therapy) put in last week.

This process involved opening up a small part of the wound site and inserting a sponge. A sealed dressing is then applied to the wound with a tube attached to a small device that provides negative pressure. I have had to change the dressing twice at home; and both times failed to adequately seal the site. Jon's battery-powered VAC device reminds me (with a gentle vibrating buzz) that I failed....I have sealed and resealed with extra tape to no avail...

Tomorrow is Jon's 3-month follow-up CT scan of the chest. Invariably it produces a bit of anxiety...but the vibrating wound VAC has served as a great distraction.

Our South Pasadena YMCA had a fitness fundraiser for Jon last week. Our reflections/musings on this event will soon follow.

"Buying a Ticket...

While Jon was in the hospital with a  neutropenic fever last week, the oncologist paid him a visit.  She said, "Congratulations...you just bought a ticket out of more chemo..."  Yes--he heard that correctly....2/3 neutropenic fevers is considered "too risky" to continue treatment.

She said, "your bone marrow doesn't like chemo...."

hmhmhm...is there bone marrow that likes chemo?

None the less, Jon is resting in the fact there is no "choice" to be made. He is finished with chemotherapy, and he celebrates its' end.

Jon will have a chest scan at the end of the month and a pelvic MRI in three months.

He is pressing into the next phase of the journey...restoration.

Home Again

Jon was able to come home from the hospital last night after his counts rose to "normal". Ye-ha...Today we are breathing deep and resting...

We watched the LA Marathon on the tele' this morning...and are thinking of all our friends running the race...

xoxoxox

Rising

Jon's WBC was 2 and his ANC was .6 this morning! He had a painful night, but we are so grateful that his body is regenerating.  His ANC needs to be at 1 in order to go home: this will likely be tomorrow.

Caleb and Josiah are doing well... thanks to the tremendous support that surrounds us.

Neutrophils

Absolute neutrophil count (ANC) is a measure of the number of neutrophil granulocytes.  Neutrophils are a type of white blood cell that fights against infection.

www.wikipedia.com

Jon's white count was .7 and his ANC was 0 when admitted to the ER Wednesday night. As of this afternoon, his numbers are the same. We are praying that his immune system starts to rebuild quickly.

The first day home from chemo, Jon began daily Neupogen injections. Neupogen helps to stimulate white cell production. A common side effect of these injections is bone pain. The last time Jon was admitted with neutropenia, he woke in the night with intense body aches. He was convinced it was the end....he had never experienced bone pain before. Now he is anxiously awaiting the "bone pain" as a sign the white cells are rebuilding in his bone marrow.

Jon will remain in the hospital until his white count is normal. No visitors please...he needs a sterile room.

Thanks for all the love....

History Repeats

Jon felt amazing after leaving the hospital last week. We were surprised how well he was feeling compared to other chemo rounds. He had a great five days....

Last night he took a turn and felt miserable. After fighting a low-grade fever for 16 hours, he decided to go to the hospital tonight. His fever was hovering around 101. It could be a virus that his body can't fight (due to a low white cell count) or it could be a bacterial infection. The latter is the danger. When your white cell count is very low, your own body's bacterial balance can go awry...causing infection.

Thank you Tom Cornwell for driving Jon to the ER...we are so grateful.

Home

Jon is home from the hospital and feeling "less beat-up than last time".  He is eating and in good spirits.

"...And the Terrible, Horrible, No Good, Very Bad Day"

We all have days when we we want to hurl stones at our circumstance...Today was one of those days. On the way to the hospital, Jon and I waded through the logic that "this might not be the best choice". We imagined turning our cheek from the next few rounds of chemotherapy, throwing our hands in the air, and going on a bike ride. What a relief this would bring...for a few seconds.

When the oncologist walked in the office, Jon raised one eyebrow and said, "I am not at peace with this...signing up for toxic sludge that carries a 1% risk of secondary cancer --just in case there are a few rogue cells." I sat, arms-folded, in a similar defensive posture....it is excruciating to imagine Jon on chemo... especially after a full recovery....

Dr. P beautifully empathized with our questions but assured us that this choice is prudent, necessary, and could save Jon's life.

The Doxifos began this afternoon and will continue through thursday.  Jon appreciates all words of encouragement and gestures of support. This leg of the journey is a bit isolating...and he is leaning on his crew.

In prayer...

Cycle For Survival (Boston Style)

My sister, Mollie, and her boyfriend, Craig, participated in a Cycle For Survival ride last weekend in Boston. This organization was founded by Jennifer Goodman Linn in order to raise funds for rare/orphan cancers. (Over 50% of cancers are considered "rare".)  Jennifer was diagnosed with a sarcoma in 2004.  Cycle For Survival comes to Los Angeles this weekend!

http://mskcc.convio.net/site/PageServer?pagename=cfs_details_main

"Tale of the Tape"

Jon has been home for just over a week recovering from surgery. He feels great aside from a few wound aches. I voted for posting a rather "cool" graphic of the incision site which cuts from upper right quadrant to bottom left quadrant...Jon nixed that idea--he was gifted with much better judgement than I. None the less, there is a beauty in the scar and what it represents.

The final pathology report indicated 90% necrosis (which means 90% of the tumor was dead). This is (again) great news. There were two small positive margins, but they were widely excised. The final measurement of the tumor was around 3 cm x 3 cm x 3.5 cm. To give a picture of the margins, roughly 8 cm x 8 cm x 6 cm was removed and the fascia (muscle) was sewn back together.

After surgery Jon reached out to Dr. Mascarenhas, who originally provided him with a second opinion. He also set-up an appointment with Dr. Syed, the pathologist,  and Dr. Girvigian, his radiation oncologist. He wanted to understand the scope/value of adjuvant chemotherapy when he is technically NED (no evidence of disease). These conversations gifted Jon with a deeper understanding of this cancer.

The debate in certain circles is whether or not chemotherapy is effective with pleomorphic rhabdomyosarcomas. Given the fact chemotherapy is not benign (it can cause secondary cancers and tissue damage), treatment has its' own risks.

In Jon's case, the CT scan after two rounds of chemotherapy indicated necrosis of the primary tumor. This suggests chemotherapy worked.

Microscopic disease is not visible on scans; and it is the threat of these tiny insidious "seeds" that warrants additional chemotherapy. It is a hard reality to digest, but if the cancer comes back as metastatic disease, it is virtually incurable.

So...Jon is moving forward with chemotherapy beginning March 4th. He is not excited about the treatment, but he is at peace with its' necessity.

This Wednesday February 27th at 7pm, Jon will be reflecting on his experience in a Lenten discussion at St. James' Church. There is a light meal at 7 pm and the discussion follows shortly. If interested in attending, please call the church at (626) 799-9194 to add your name to the dinner list or you can "pop in" for the talk at 7:20...

Day II Recovery

Jon will remain in the hospital until the doctors remove the drain from the incision site. Hopefully that will happen this afternoon.

Jon saw Dr. Helmstedter this morning and discussed a few surgical details. There was a small positive margin (cancer cells present in the flesh outside the tumor) on one side, but the surgeon removed all the tissue that contained these cells. He described the tumor as "dead as a doornail".

Jon is in great spirits and was even able to stand last night. The PT (physical therapist) will come in today and assess his gait. Given his "generous" musculature, we are hopeful he will have minimal complications. This is a man who broke his knee cap in collegiate indoor track, rehabbed for 8 weeks, and then qualified for nationals his first meet back.  Jon will not approve that I posted this....!

Recovery

Jon was prepped and ready for surgery at 2:30 today. Reverend Anne came to pray with Jon and ended up praying with both he and the surgeon, Dr. Helmstedter.

Two hours later, Dr. Helmstedter reported that he removed a "mostly dead" sarcoma from Jon's left glute. This is great news, even if the medical team can not ascertain which weapon killed it (chemotherapy, radiation, prayer, or pomegranates).  As previously described, the tumor/margins were sent to pathology while Jon was on the table. The margins were clear, meaning cancer cells were not present outside the tumor.

After another two hours, Jon was delivered to his hospital room where he will stay the night. Upon seeing me, he asked about the tumor and then proceeded to tell me he needed food. This is a good sign. The nurse was bewildered as she watched him eating chicken fajitas, "aren't you nauseous?"

Not at all.

Jon is in pain; but he has a nice button at his fingertips to take the edge off.

Thanks for the texts, messages, and prayers today... Jon felt them all. He is excited to get the final pathology report next week. We will keep you posted as details are available.

Happy Surgery Day!

Jon's surgery is scheduled for 2 pm today. As many of you know, he is asking for a heart-shaped incision.  

We will keep you posted as details unfold. We are praying for clean margins and generous necrosis (death of cells in tumor)...

Much love....

Jon's Reflections

If interested, check out some of Jon's thoughts in an interview with Greg Richardson.

www.strategicmonk.com

Surgery Scheduled

We spent five hours at Kaiser Baldwin Park preparing for the removal of Jon's tumor on February 14th. The skin on Jon's left glut needs to heal adequately to avoid wound complications after surgery. This delay between radiation and surgery is mentally challenging; but Jon is trying to be patient. The chest CT scan was clear, which is great news. The tumor is slightly smaller than it was in October. Given sarcomas can grow at expeditious rates, this is hopeful.

When the tumor is removed, the doctors will not know if necrosis (death of cells) was due to radiation or chemotherapy. We are forced to live in the ambiguity...and this is hard. After surgery, the oncologist and Jon will come to the table to discuss the next phase of treatment. If all goes as planned, Jon will have four more rounds of chemotherapy.

This blog is a challenging line to navigate. Jon and I (as his wife) can hear the exact same piece of news and interpret it differently. In the end, Jon and his doctors will make the best decision. Jon and I have both agreed that this journey leaves us on opposite sides of the table (different vantage points). He is the only one "going through" treatment....Even though we have parallel experiences, we are in this together.  

Jon asked if he could see the tumor and the surgeon explained that it would be frozen by the time he came out of anesthesia. The tumor will be removed with a 1cm margin and immediately sent to the pathologist (while Jon is on the table). If the margins are clear (without cancer cells),  Jon will be stitched up. If the margins are not clear, the surgeon will carve out a bit more.

Pre-Op

Jon's pre-op appointment is in a week and a half. In the meantime, he is enjoying life without daily trips to the hospital. Hiking, biking, running, and pacing the house fill his days... Given this cancer is very rare, it is ironic that the President of Venezuela, Hugo Chavez, is battling it as well.

Megatron

"Megatron" is the name of the machine that treats Jon's primary tumor. This four million dollar machine can be seen here. For the last three weeks, Jon has driven to Kaiser Sunset 5 days/week for treatment. This is a rather "liturgical" season in his treatment plan; and it will come to a close in two weeks. Jon will then wait for his skin to heal and surgery will promptly follow. The surgery will include the removal of the primary tumor in his left gluteus along with adequate margins.

Four rounds of chemotherapy will follow surgery.

This is an incredibly long race, but Jon maintains a very positive attitude. He refuses to let the disease define him. Whether he is at the Mater Dolorosa Retreat Center in Sierra Madre or riding San Gabriel foothills, he is mindful of being still... even in the waves of anxiety...

And these little animals help keep it all in perspective....

Labor

Jon spends 7.5 minutes in radiation therapy daily. (He timed it, of course.) As his former triathlon training partner, I know how Jon loves his stopwatch!

Jon has some minor skin irritation and fatigue, but overall, he feels great.

The Pasadena Weekly published an article on Jon yesterday:

http://www.pasadenaweekly.com/cms/story/detail/this_is_life/11719/

Sara Cardine did a great job paraphrasing Jon's outlook on this season of life...

As he prayed a few weeks ago, "I hope this experience gives more than it takes away..."

Kate Douvan (www.artgirls.com) designed these shirts for the Cycle Annex "Ride For Jon". They sold out, but if you see someone wearing one around town, share a hug!