Update on my ministry and cancer journey

12 Nov

Dear Friends and Supporters,

May 16, 2018 survey found that 26 percent of Americans age 18-64 struggled to pay medical bills. According to the U.S. Census, that’s 52 million adults.  One million said they declared bankruptcy.  Some have gone into foreclosure.  One friend who’s father just passed away of cancer had to remortgage their home.  After what I have experienced in the past two months, I understand why.  Health care reform is long overdue. Health care cost are keeping people trapped in poverty and pushing many onto our streets. 

Some of you have already learned and others don’t yet know that I have been diagnosed with a type of slow-growing cancer called Follicular Lymphoma. Thankfully, it is slomom and jilw-growing and can be treated, but there is no cure. With treatment there is a 94% chance of survival, without 50%. But we know that God our Healer is big and able to do more than we can imagine.  It has been a whirlwind the past two months. Many have expressed a desire to learn what is happening with me.  The following timeline helps to explain why I have barely had a spare moment these past two months.  I has been a healing exercise for me to write this out, but you some of you may want to skim or skip the ministry update at the end.

donnaAugust. 31: I was at Shell Beach on the California Central coast, helping my sweet 88-year old Mom find a new once-a-week helper. In all the fast-paced urgency to find someone before I had to drive back to Pasadena I snuck in a shower and was disturbed by a lump I felt in my armpit—so I ran to the phone and made an appointment with my doctor. That week I had a flu shot and my sister said that sometimes swelling can be a reaction.

Sept 7: Dr. Cleo said that is was likely nothing—asking me how I go about shaving and recommended not to use a razor but to wax. But just in case, she sent me to get a sonogram that day. I waited almost two hours to get in, but the care I received was worth it. They were very concerned, called in the radiologist and did a biopsy on the spot.

Sept 8-21: Anthony and I had a never-to-be forgotten and much needed vacation in Hawaii, thanks to frequent flyer miles and Quaker hospitality it was affordable—and powerful to stay with locals and partake in Hawaiian activism. We received the call while lying on a quiet beach with deep blue sky and ocean, and verdant palm trees. The lump was indeed cancerous. It was follicular lymphoma. Dr Cleo explained that of all the cancers, this was the best kind since it is slow growing. She wanted to break the news after the trip, but what a better place to hear such news cushioned in such beauty. God had totally prepared me; I was actually not surprised.

Sept 25: Anthony and I met with Dr. Chung, the City of Hope oncologist in Arcadia, and he ordered PET and CT scans so we would know if it had spread. We were impressed that they got me an appointment the next day!  Dr. Chung assured me that it would be okay to keep my plans to attend a housing conference in Pittsburgh the next week.

Sept 26: A marathon test day—in the morning back to Arcadia with Dr. Chung to do a bone marrow test to see if it had spread into the marrow. He was able to get the perfect sample and even showed it to me—it looked like a tiny red pipe cleaner. But I don’t recall anything hurting so badly—it was extremely painful, even with a local anesthesia. From there I spent most the day preparing for, doing and recovering from the very long process of CT and PET scans.

Oct. 1-4. Again Quaker hospitably came through with a $25 a night stay in the Pittsburg Meeting Guest House making this trip affordable with delightful Uber trips to and from the conference. It was fabulous in every way! My hope is to have students from the One-Year Housing Justice Institute attend this Grounded Solutions conference next year.

Oct. 9: Anthony and I met with Dr. Chung to learn of the bone marrow, CT and PET scan results. I was not as emotionally prepared this time hear that it had spread. The area in my armpit measured 1” by 1.6”, plus two small spots in my gut and one tiny one in my clavicle.  But thankfully, none in my bone marrow!

Oct. 11: We went to see Dr. Budde for a second opinion. She is a renowned follicular lymphoma specialist and researcher on the City of Hope main campus in Duarte.  We waited four hours past our appointment time before we got to see her! She highly recommended that we go with a treatment plan of Rituximab plus Revlimid—a new front line use for follicular lymphoma. So new that it is not yet in the written protocols for insurance companies, but demonstrated via studies as recent as June 2018 that this combo of treatments significantly lower the side effects. This drug is essentially the same drug that created the Thalidomide babies in 60s born with deformed limb—therefore pregnant women cannot take this. No problem here since I had a hysterectomy in 2009 and just turned 65 on Nov. 1st.

Oct. 14: Back to see Dr. Chung to finalize the treatment plan and begin the marathon effort to figure out how to pay for it. Revlimid costs $165,000 a year in the US.  (My brother who lives in Australia called for my birthday. I was so impressed that he knew about Revlimid. It was just approved there, and in Australia it cost $43,000 because there on caps on what can be charged.) Blue Shield took a week before letting us know that they had denied its use and approved only 8 of the 20 treatments of Rituximab and at a lower dosage. How is it possible that an insurance company can determine your treatment plan above the word of a world-renown expert? Dr. Chung sent in an appeal. That took a week! Blue Shield finally approved the drugs at $16,000 a month!! Was there a way to get these meds covered without having to sell the home we had just paid off the week before?

It was now four days before my 65th birthday—when I could receive Medicare. I was in a race against time to find a new part D insurance company that would cover the Revlimid. I could feel the cancer growing in size in my armpit and the pain increasing.  I spend 8 hours on Monday, Oct. 29th and 8 hours on Tue, Oct. 30th on the phone calling companies and going over options with Marty, our insurance agent.  Nothing. By mid-Tuesday our agent had to attend to other clients but he gave me “homework assignments” –brilliant ideas—to find out the name of the pharmacy that City of Hope uses for Revlimid and ask what insurance companies cover it, and to call the company that makes  Revlimid, based in New Jersey. Bingo! This helped me decide on a Part D carrier…. Optum RX, but they are actually off the hook, because the Revlimid Company has a patient assistance program that we qualify for because of our lower income status—but just until Jan. 1st. So we will need to re-apply and hopefully again qualify.  Please pray.

We were to leave for the Christian Community Development Conference in Chicago on Oct 31, but we were too stressed and exhausted to consider going. Anthony spent the afternoon seeking to cancel our lodging and flights with the trip insurance.  I have not missed a CCDA conference in over 20 years. It was a huge loss, but we just were not up for it.

Nov. 8: From Nov. 1-8, after many more calls to get all the paperwork signed and submitted by the doctor before the end of the east coast business day (we lost several days before treatment could begin due to the time difference) on Thursday, Nov. 8th, we were scheduled for the first Rituximab treatment.  Everyone at the center was delightful, making us as comfortable as possible, and explaining it all so clearly. It took from 9am to 2:30pm for the first intravenous drip treatment since they slowly build up to a bigger dosage, checking vitals every half hour. They filled me up with Benadryl to minimize reactions—so the rest of that day I was half asleep. We go back for this intravenous treatment once a week a month, then once a month for 3 months, then once every two months. The full treatment for both the Rituximab and Revlimid is 2 years.

Nov. 9:   The Revlimid arrived in the mail. I take the pills once a day for three weeks, then one week off. I figure the pills are worth about $800 each. So I am praying like crazy that they are worth their cost and clean up this cancer!

anthony and jillNov. 11: It’s been four days since I’ve  started treatment and I thank God that there have been no major side effects—super thirsty, some fast heartbeat that settles if I rest, slightly lightheaded, and some tiredness. I was able to sing loud praises in church this morning, and enjoy fellowship.  Amazingly, I have been able to continue many ministry efforts squeezed between doctors’ appointments. Enjoy this update.

 

Ministry Update

  1. The two weekly Bible studies in our home, one with Mark who was formerly homeless and stays in our back house, continue to draw us closer together, closer to God and nurture us for the work that God has called us to do. Our monthly Quaker Bible study steadily grows both in size and depth. It is a huge blessing for us all as we meet God in the midst of sharing our impressions, experiences and insights
  2. Anthony and I were interviewed by a documentarian about the marriage mentoring course that we took that so helped us. Now we are featured on the Hope 4 Marriage website! See: http://www.hope4marriages.org/  I’m meeting with a pastor in the process of divorce, sharing tid bits of what we learned as she is ready to hear it.
  3. I have been able to keep several speaking engagements for a class at Cal Lutheran and in Spanish at for a course at Fuller Seminary.
  4. jil at partyIn the midst of this cancer journey on Oct. 27th the nonprofit we started, Making Housing and Community Happen was launched with a fund raiser with over 100 attending, raising over $3,000. This is a great start! Due to this cancer diagnosis, I am keenly aware of the need to hire staff. If you feel so led and are not yet giving to Mission Door, please prayerfully consider a one time or a regular contribution. See info below.
  5. Anthony is taking leadership in advocating for homeless housing. Research from
    mercy housing

    Mercy Housing’s Orchard House is a motel conversion in Santa Ana with 71 units for formerly homeless folks. It has significant environmental features.

    years of experience show that permanent supportive housing (PSH) ends homelessness. Pasadena wisely passed an ordinance to allow problem motels be converted into PSH. Presently in some motels rooms are rented hourly, drugs and homelessness abound. When converted all residents are well vetted, each has a case manager and one manager lives on site. Local businesses will see homeless neighbors housed as opposed to sleeping in their door ways. Anthony has a solid team in place with excellent ideas for reaching out to churches close to potential motels.

  6. I met Anne Marie and her husband Carlos because they want to build a back house anne marie(Accessory Dwelling Unit-ADUs) and were having trouble with the city’s impossible requirements. For all of Pasadena our ADU team was able lower the property size requirement and alleviate the $20,000 impact fee in exchange for affordable housing, or in the case of a family member living in the unit.  Anne Marie is now leading an effort to help shape the city’s pilot program to offer low-cost loans for those who wish to convert their garage or build a detached unit if they are made available to a low income resident at risk of becoming homeless.
  7. Our Inclusionary housing team (Inclusionary is where all developers set aside a percent of housing to be affordable, like a biblical tithe) proposed that all 533 affordable units produced via this policy should be placed into, and monitored by a Community Land Trust (CLT). A CLT is an excellent model, with over 300 cities today utilizing CLTs to preserve housing affordability in perpetuity—today much of our affordable housing is opting to go market rate! Our housing director (who knows and loves Christ) has invited me to join him and others to discuss this on Nov. 20th with City Bank. I have been promoting this model for almost 15 years because it fits hand and glove with Leviticus 25 land use laws. The fact that the city is exploring this is a huge answer to prayer!
  8. Mercy is leading an effort to insure that Fuller Seminary sets aside all 167 of themercy and jill units on its campus that were created via the city’s inclusionary policy.
  9. As a result of the One-Day Housing justice Institute we did in Monrovia in April, we have trained leaders who are now working with a faith-based team to capture a percentage of all the 2,000 new housing units Monrovia plans to build, to be set aside as affordable. Carol, speaking here at the fund raiser is one of those leaders.

We ask the “why” questions. Why are 53,000 people living in the streets in LA County? Why is our system not working for the “least of these” and how can follow the example of Jesus and all the prophets to change laws and allocations of resources to be more compassionate and just?  We see policy change as a ministry, which translates into transformed lives, transformed cities where God is redeeming the cancer in our systems to bring about housing justice.  Rejoice with us in God’s healing of our bodies, our cities, our decision makers and those of us helping to shape those decisions.  To God be the glory!

With deep gratefulness to you and with joy in this amazing journey,

 Jill

Our fund raising goal: $15,000 by Jan 1st to hire a grant writer, and part-time assistant.

 You can contribute to Making Housing and Community Happen two ways:

On line: https://makinghousinghappen.wedid.it/

Or, send monthly checks made out to “Social Good Fund” with “Making Housing and Community Happen” in memo line to:

Social Good Fund, PO Box 5473, Richmond, CA 94805-4021

To contribute to Jill Shook’s missionary support with Missions Door you can contribute several ways, on line:       http://www.missionsdoor.org/missionaries/shook-jill

Or send checks to Missions Door

2530 Washington Street, Denver, CO 80205

Call to set up a credit card or direct deposit 303-308-1818

 Jill’s contact information:  

Blog: makinghousinghappen.net 

Website: makinghousinghappen.com,

Jill@makinghousinghappen.com   Phone: 626) 675-1316

 

 

 

 

 

 

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: