son of Janette Johnson
UPDATE: Dec 22, 11pm
today is a glorious day.
after 11 hours of surgery my mom is free of the 10.8lb tumor that has been sucking the life from her these past few months (imagine having something larger & heavier than a milk jug hanging off your chest.) She gets to keep all her ribs (which is major!) but still had a bunch of muscle and skin rearranged from various parts of her body to compensate for all the removed tissue. Her stellar team of doctors all agreed it was the best scenario they'd hoped for. She's breathing on her own and gets to stay in an observation room for the night instead of ICU. The nurses all seem surprisingly relaxed considering what she just went through but we got to say hello for a few minutes. She looks great. Her first words to me: "It was God"
There was a beautiful calm and levity hanging at the hospital all day with my sister, grandma, and Dad & his two best friends from college sharing stories, playing games, and waiting expectantly for each subsequent update
Thank you everybody for your prayers, your words, your gifts, your love. We are all swimming in gratitude
Many of you know a little bit of what's been going on with my mom. Some of you don't. Here's a quick update (with a much more detailed version following below):
The quick version.
My mom Jan Johnson has a very rare form of cancer (less than one-percent of all breast cancer cases) called sarcoma phyllodes which has resulted in a huge mass in (and on) her left breast about the size of a NFL football. After 2 months of tests and doctor visits in multiple cities she is finally scheduled for major surgery on December 22nd with a team of specialists at Barnes Jewish in St Louis, MO to remove this fast growing tumor (as well as any parts of her chest wall that the tumor is touching.) Thankfully the cancer has not spread throughout her body and doctors feel good about her prospects but it is a pretty major surgery and she will have a long road of recovery.
I’ve spent the majority of the past two months since mid-October with her in Missouri helping take care of her in her weakened state, driving her to doctor appointments, and essentially being a mom to my mom.
Thursday December 22nd she begins a 12-14 hour surgery starting at 7:30am. Three doctors and their teams will be operating on her - a breast surgeon (who will remove the tumor and any skin and muscles that the tumor is touching,) a plastic surgeon (who will move muscles around from the abdominals, right pectoral, and back to replace anything removed as well as skin from belly, back and thigh,) and a thoracic surgeon (who will remove any ribs that the tumor is touching and replace with titanium ribs.) She'll be in ICU for a few days on a breathing machine and in the hospital for 1-2 weeks after. The majority of our family is up in St Louis with her at this time, including my grandmother and my mom’s two younger sisters who will be flying in on Christmas day. Our family Christmas this year will undoubtedly be the most unique one of our lives.
Many of you have asked for tangible ways to help. Scroll down to the bottom of this page for more info.
Want a more detailed version of what's been happening? Continue reading...
The long version.
Janette Johnson is a gentle, loving woman who adores books and creativity. From starting a sewing company with her best friend, running a small printing company with my dad, and managing multiple bookstores after all us kids had graduated, she's self-motivated with quiet and graceful determination. She was a firm believer in the idea that education doesn't end when you leave the classroom. That caused her to eliminate the classroom almost entirely and homeschooled me for kindergarten and from 3rd grade til graduation, enabling a cornucopia of experiences for my adolescent self, including working professionally in musical theatre between the age of 14 to 18 (and my sisters at even younger ages.)
Right now, this amazing woman has a very rare form of cancer (less than one-percent of all breast cancer cases) called sarcoma phyllodes which has resulted in a huge mass in (and on) her left breast about the size of a NFL football. After months of tests and doctor visits in multiple cities she is finally scheduled for a major surgery on December 22nd to remove the tumor (as well as any parts of her chest wall that the tumor is touching.)
But first, a little context...
Starting this summer there was evidence of a growth that she was initially attempting to treat via holistic means. In mid-October, however, she was referred to a surgeon in Springfield, MO (about 40 miles from where my parents live in Branson MO) which started a month-long process of tests, meetings, scans, and more meetings, ultimately resulting in a team of bewildered doctors who determined they didn't have the expertise to address her situation at that hospital. Meanwhile the mass on her breast continued to grow causing discomfort and zapping her vitality. Since late September she had been spending her nights (and most of the days) on the couch recliner in the living room as the only way to find comfortable positions for otherwise fitful sleep. This first month was emotionally turbulent for everyone, filled with a lot of unknowns - has the cancer spread throughout her body? What kind of timeline does she have to live? Did we wait too long to seek the right treatment?
I came home on October 15th after finishing a project in Texas. A gig back in LA had cancelled on me and it opened up my schedule that I felt maybe I should head home and see mom. I was in Austin and coincidentally my youngest sister and her family were in Dallas for a conference that week. I cancelled my flight to LA, took a bus to DFW, then rode home with them to Branson, MO. That night I saw my mom's condition (and how quickly it had progressed) for the first time since early August. During a bit of emotional overwhelm I had an insight that night - I will mourn my mother one day, whether 30 days or 30 years from now. My job right now is to love her and serve her. So I made the decision to put everything else on pause and take care of her until we knew what was going on. In that time I essentially became mom for my mom: making meals, cleaning, and driving her to most her meetings and tests. Other than a quick dip to CA for a wedding the end of October and a 10 day trip to NYC in mid-December I've been home with her. My father works seasonally and this is one of his busiest times of year so I felt this time period was the most significant to be with her, regardless of the length of her ultimate recovery.
I have two younger sisters. Kara lives in NYC with her husband and two kids. The youngest, Melinda, lives near my parents with her husband and four kids, and had been shouldering a lot of the responsibility of communication and care until I arrived. Kara finally came here with her kids on from November 19th to December 19th and rented a condo nearby.
On November 18th the surgeon in Springfield finally admitted he didn't have the expertise to deal with her situation and referred her case to a specialist at Barnes Jewish in St Louis, MO about 4 hours away from where my folks live. At this point we’d finally learned to stop hoping that subsequent appointments would give us all the information we hoped for. The Monday before Thanksgiving my dad drove her up for the initial meeting with the doctor. She packed an overnight bag and we all hoped they would schedule her for surgery within a day or two and we'd all drive up to spend Thanksgiving with her in recovery at the hospital.
Though she’d initially kept the news low-key Mom finally announced her situation on Facebook the week prior. Unsurprisingly she received an outpouring of support from her friends, including a lot of, "what can we do to help?” My mother is not the type to ask directly nor wants to inconvenience anyone However, she'd mentioned to us kids a couple of times that she wanted a Lay-Z-Boy power recliner. Her old couch recliner had required a cornucopia of pillows to give any sort of comfortable position and was difficult to get in and out of. So, at 10pm the night before my parents drove to St Louis for the meeting with the new surgeon, my sisters sent out a message to all the friends who'd responded to her announcement. By 10am the next morning we'd received about $1k of the $1700 necessary to buy her the recliner she wanted. 24 hours later we'd received the whole amount.
While my dad and mom were gone that day for a quick trip to St Louis, leaving at 5am and returning at 4pm we cleaned and rearranged the whole living room with the addition of her brand new power recliner. My mom had been pretty disheartened at the news that she would have to wait yet another week and a half longer for the next round of doctor visits. But on arriving home both my parents were in tears at the surprise and generosity of the chair. Mom no longer needed her ever-shifting sculpture of 5-6 pillows and she slept better in her new recliner than she had in months.
That day she had met with Dr Cyr, the breast surgeon who will be removing the tumor and the left breast. November 30th I drove mom back up to St Louis for 2 days to meet with Dr. Fox the plastic surgeon, responsible for all soft tissues: muscle, fat, skin and Dr. Puri the thoracic surgeon, responsible for all hard tissue, namely the chest wall breastplate & ribcage. The following day she met with a radiation oncologist and the medical oncologist and got a new PET scan and CT scan cos the tumor had grown since she got her first scans the month prior. This particular team work in tandem regularly and have done so for years. Both Dr. Puri & Dr. Fox told me they’d seen worse cases, but because she is otherwise healthy and the cancer hasn't spread elsewhere they feel confident about her prospects. The oncologists all agreed that surgery was the immediate next step as radiation wouldn't help her before, but will most likely be necessary after. The first of two surgeries was to be scheduled the following week and the main surgery two weeks after.
Knowing there was now a schedule in place (finally!) my sisters encouraged me to take a little break and fly to NYC for 10 days to do some work and celebrate my birthday with friends. So I left from the 4th-15th.
Mom had a preparatory surgery Monday, Dec 5 with Dr. Fox the plastic surgeon. Called a "delay procedure” it was a pre-surgery to tie off blood vessels in the lower abdominal to increase blood flow in the upper. She stayed overnight in the hospital after a three hour surgery and was released the next day. The pain-killers had some crazy side effects and made for an interesting week.
The main surgery, scheduled for December 22nd, will be 10-14 hour procedure with the breast surgeon (& her team), plastic surgeon (& her team,) thoracic surgeon (& his team.)
Dr. Cyr the main surgeon will remove the football-sized phyllodes tumor and left breast and whatever parts of the chest wall that the tumor is attached to- skin, muscle, fat and ribs. It's a negative margin surgery, meaning they'll take out millimeters past the cancerous areas to make sure they get everything. The muscles of the chest wall are definitely affected. Ribs, T.B.D. The plastic surgeon will then move muscle, fat and skin around from the back and belly to close the wound and account for the removed skin & muscle tissue. She might pull parts of the right pectoral muscle across the chest. Might shave skin off the thigh as well (will be like road rash and will grow back) Will have drains installed and fluid collection will be part of the recovery process. They will leave the right breast intact to minimize unneeded recovery, can be deal with at a later time if desired/needed. If the tumor is touching or attached to the ribs, those affected will be removed by the thoracic surgeon and a titanium plate or plates will be installed to replace ribs and give rigidity, protect the organs and give something for the newly relocated muscle tissue to hold on to. If ribs are removed she will have diminished breathing capacities in the future.
Immediately following surgery she will be in the intensive care unit for a few days and then hospitalized for 1-2 weeks after. The main issues will be monitoring her breathing (which initially will be with a machine) and pain control. Once released she will go home with installed drains and stitches. Home care will be necessary post-surgery with a visiting nurse. The plastic surgeon will see her once a week for three weeks to follow up and eventually remove the drains and stitches. The toxicology report on the removed tumor will determine if chemo is recommended. Radiation will most likely be necessary once she’s healed from the main surgery.
So the Johnson family will be celebrating this Christmas at Barnes Jewish Hospital in St Louis. Tomorrow Tuesday December 20th we're driving up for mom's pre-op testing on Wednesday to prepare for the surgery Thursday. We’re renting a small duplex a few miles from the hospital and my youngest sister Melinda's family will be parked onsite at the hospital in their RV. My grandmother will be with as well. My mom’s two younger sisters will be flying in on Christmas Day and my other sister Kara will fly in next week. Needless to say, this will be the most unique holiday of our lives!
Want to help?
Many of you have asked for tangible ways to help. If you want to send money to my family for travel/lodging/medical expenses you can donate to my parents via my PayPal account www.paypal.me/danielnjohnson or you can send via Venmo to my account at 646-701-1400. Other options are donating airline miles for family members to travel back and forth or hotel points for subsequent stays up near the hospital in St Louis. And of course, prayers, thoughts, texts, calls, emails, letters, videos, etc are all appreciated. Care packages are a bit impractical at the moment since we'll all be 250 miles away and we won't know her release date til it happens. Will keep you posted though.
If you’re wondering how to support me personally one option is to purchase a photo print from my online store. Custom prints are also available, just let me know what you're interested in. All proceeds from that will enable me to continue being here with my family during this time.
Thank you. I love you. During these crazy past few months I've been overwhelmed with gratitude by the care and support of the people in my life. If you have any questions feel free to email or call.
The son of Jan Johnson (and family)