Help JJ Beat Back Cancer!
For those that don't know, here is JJ's story.
In the fall of 2014, JJ was diagnosed with breast cancer. It was ER/PR positive/ HER2 negative and a very large, aggressive tumor of 4.5cm. (On the TNM scale of 3 to 9, hers was the most aggressive at a 9.)
Chemo was recommended first to shrink the tumor before surgery. JJ went through four and a half months of chemotherapy and handled it like a champ, continuing to work and making it to karate whenever she could. The chemo was taxing on the body and, inevitably, her hair did start to go. Instead of worrying, she proactively shaved her head...and still looked awesome! The chemo worked, shrinking the tumor by over half. Yet in the four weeks required to recover between chemo and surgery, the tumor grew back. March 5th, 2015, she underwent a five-hour surgery for bilateral mastectomies and lymph node removal. We hoped that would take care of the cancer. Unfortunately, the pathology right after surgery revealed 16 of 45 lymph nodes testing positive for cancer as well. After several weeks of recovery, JJ underwent 35 rounds of radiation that left burns on her chest and back. Still, through all this, JJ worried more about how I and her friends were doing than herself. She's amazing that way.
Since her cancer was estrogen-driven, she also had a hysterectomy to lower the chance of estrogen feeding the cancer. Then, several more weeks of recovery and it was on to medications to suppress recurrence. We were living life in the 'new normal' with follow-up visits and blood tests every few months. After eighteen months, all the tests looked good.
We hoped the cancer was gone but at a chiropractic visit a couple of weeks ago, the doctor noticed a swollen gland by JJ's collarbone. We got in to see the oncologist the same day, who ordered a CT scan. It showed suspicious lymph nodes and possible lung involvement. A follow-up PET scan and biopsy were done to see if and how far the cancer had spread. It was a long ten-day wait.
The results are a mixed bag. The lung lesions are either too small to show up as cancer at this point, or it could be benign scarring. We won't know for a while. The PET scan shows cancer in the lymph nodes of her neck/ sternum area, but luckily, it has not spread to other organs or bones. The tumor status has changed from ER/PR positive to triple negative, which brings a new set of challenges.
At this point the disease is considered stage 4, which means it may not be curable, but it is still treatable as a chronic condition. The oncologist is recommending a new chemotherapy regime to start very soon, so JJ will be going in one day a week for several rounds, and then more tests and scans to see how well the treatment is working. Our goal is to kick the cancer back into remission and keep it there for a long time!
For everyone who's been a friend or acquaintance of JJ, you know how kind, funny and generous she is with her time and talents. She's a gifted musician, a dedicated martial artist, a wonderful friend and the most amazing spouse anyone could hope for.
I'm hoping to raise enough donations to ease the financial burden of insurance, medical care and other basic expenses while JJ takes on the task of getting better. We were lucky last time as we had a 401k and some savings to fall back on. However, cancer is an expensive disease. Doctor visits, chemo, tests, scans and medications get to be daunting even with good insurance. With our insurance premium going up almost 40% in January as well, we need to reach out to the community this time in order to get JJ healthy again!
If you find that you can donate to help with our impending insurance, medical and other expenses, it would mean the world to both of us.
JJ had a smile that could melt steel, an easygoing personality that made everyone who met her feel at ease, and a generosity of spirit which she shared often.
I was out of karate for several years when JJ surprised me with a gift certificate to the Seido Hollywood Dojo. I took her with me, and she took to karate with a fervor I wish everyone could muster, myself included. Getting her black belt filled her with a sense of awe and accomplishment that I believe could not be matched by anything else; not for the status that the outside world attaches to it, but for the true meaning of humility, honor and integrity it symbolizes. One can have a black belt, or one can be a black belt. JJ was the latter.
Reconnecting with her cousin Margie was a true high point in her life. JJ loved Margie (and her sweetie Norm) deeply and unconditionally. The times spent just having dinner, playing cards and laughing until our sides hurt made the hard times less difficult. She also had an amazing group of friends that kept her spirits up from the beginning of her fight. Her amazing Hub Television family stayed connected long after the channel closed. Dinners with Audrey and Marcia or Michelle and Brian, game nights at Roseanne and Kathy’s or playing Kubb at Sharyn and Andy’s, and so many others that stayed with us through the last three years…I can't thank you enough.
JJ was a complex soul—a jazz aficionado as well as disco and Barry Manilow fan- or as she like to say, a ‘Fanilow.’ A dedicated karateka, avid cyclist, incredible musician, talented television executive, retired deacon, MMA fan, Mario Kart expert, dancing fiend and fierce, loyal, loving friend and spouse. I could not have asked for a better person to share my life. I am truly at a loss right now. JJ was, and still is, my everything. January 29th would be our 14th anniversary together.
JJ's friends and I will be putting together a celebration of JJ's life in the coming weeks and I will let everyone know when that will be. For now, I am sorting the more immediate goals of completing JJs last wishes. She didn't want a funeral. Instead, she wanted her remains to be donated for research, to see if perhaps some good will come of it, so others will not have the same challenges in the future. Still thinking of others.
If it is all right, I will be leaving this GoFundMe page up a while longer as I have many final expenses to cover besides the basics of rent and bills. I was not able to work much these last few months while caring for JJ, and it will take me a while to get back on my feet to be able to cover all the incoming hospital bills and still keep my apartment.
The dojo put together a video for JJ, which she was not able to see. I'm adding the above link so that you may see a bit of what others saw in such an amazing woman. Thank you so much for all your love and care. JJ never believed so many people loved her before all this, and I know it touched her deeply—as it did me.
The immunotherapy drugs arrived, but the X-rays show that JJ does not have enough lung capacity at this time to safely use them. With Immunotherapy, some patients have a strong reaction called 'tumor flare.' It means when the immune system starts attacking the tumor, it gets inflamed and even grows larger for a time before dying off. Because JJs lung capacity is very limited right now, a tumor flare could be catastrophic.
The oncologist came in to speak with us. She said some people simply get tired at this point, and if JJ wanted to go home and spend what time she had with family and friends, she could arrange that, as we have a huge uphill battle ahead of us. The other option was to try another chemotherapy to see if she can shrink the tumors enough so that JJ can try the immunotherapy later, but there is no guarantee.
Suffice it to say we were devastated by this news, but JJ says the only way to go is forward, so she chose chemo. It took two more days to get medication from a specialty pharmacy as our insurance company changed on January 1st. We made ongoing calls to two pharmacies, the insurance company and the oncology office, and forked over the first $150 copay to procure the chemo medicine, then I waited on our front porch this morning for the meds to arrive.
As soon as the nurses got them, they set up the treatment with the oncologist and JJ has had her first dose. It is an oral medication: three pills twice daily for two weeks, and then one week off before repeating.
JJ will likely be in the hospital another week or two, but she is good with being totally stable before being released again. We want he best chance for this chemo to kick tumor butt!
And on a side note, the nurses were kind enough to order her a more comfortable bed and she is sleeping like a rock. Let the healing begin!
A few days ago, JJ was having quite a bit of trouble breathing; we went to the e.r. and they admitted her to the hospital for labs and a CT. Unfortunately, the CT scan shows that the cancer has progressed to her left lung as well, which is causing the inflammation and breathing problems. Since it is likely that the damage to her right lung is too severe to regenerate, the pulmonologist and oncologist agree that immunotherapy is the best option now. She has been approved to receive Keytruda for ‘compassionate use.’
I took JJ home and set her up on home oxygen again to wait for the new treatment to start, but in the middle of the night she had terrible trouble getting enough air - her percentage levels dropped into the 80s and 70s. Her pulse would race to 145 and plummet to the low 60s. With problems trying to get the on-call doctor to call us back, I piggybacked her O2 cylinders with her air condenser to get her into the high 80s but she was still in distress. She did not want to go back into the hospital. In the morning our friends Kathy and Michelle came by and with their help, JJ decided to go back to the e.r.
It was another stressful night. JJ had multiple panic attacks due to severely low O2 levels caused by coughing. She is currently on anti-anxiety medication, pain killers and breathing treatments every 4 hours as well as high O2 to make her comfortable. I am sleeping at the hospital so she gets everything she needs, and others are dropping in so that JJ is never alone.
The oncologist says we are literally just waiting for the truck to bring the immunotherapy drug to get started. It's a hard wait both because we want to start right away, but also because this is still experimental for her cancer. Its essentially a ‘Hail Mary’ treatment. Keytruda has had amazing success in the people who respond. Unfortunately, if it doesn't work, we may be out of time to try anything else.
JJ hasn't given up, she just wants everyone to know the full story at this point. I can't thank everyone enough for all the love, care, donations, support and prayers in this extremely stressful time. We're still holding out for that great New Year to start, so please keep JJ in your thoughts and prayers!
JJ has been having more breathing issues recently and her platelets were down enough that the oncologist decided to hold off on Tuesday’s chemo treatment. She scheduled a pet scan to see how the chemo was working. Unfortunately, it looks like this chemo has failed and JJ’s cancer is progressing again. Not the news we wanted to hear.
In light of this, the oncologist has taken JJ off chemo and is consulting with her team to find the next course of action. JJ had already been approved for ‘compassionate use’ of an immunotherapy drug, so that may be the next plan of attack. She now qualifies for a few drug trials as well (these required her to fail several chemo regimes first) but they aren’t optimal as she would have to go through biopsies, testing and paperwork to first be accepted into a trial, and that can take up to a month.
The compassionate use drug doesn't require any special testing first. Because of the progression, and JJ’s breathing issues and continuing weight loss, the oncologist would like to get her started on something quickly, and so would we. Still, we can't do anything until the first of the year, as we have a new insurance plan starting (due to our insurance company pulling out of Southern California.) Waiting is frustrating and scary. But hopefully, being off chemo will give JJ the chance to settle her stomach, get back some normal taste, and be able to put on a few pounds for this next big challenge.
Please send lots of good thoughts and prayers that this next round of immunotherapy is the one that kicks JJ’s cancer to the curb for good! And if you can, please continue to share this page—it's been a true blessing in very trying times.
Have a great holiday season, and we will update everyone when we know more!
Osu Senpai Dee and JJ, We will keep praying for that tumor shrinkage! It is hard to get to Pasadena from Agoura weekdays, but Sandy and I would like to visit Sunday if that is convenient. Let us know if that works, and if there is anything we can bring - music is always our favorite activity to raise the spirit if that sounds good to you. Anybody got a guitar?.
Great news! Hoping to visit soon!