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no protons

The wait for a response from Dallas was blessedly brief. Dr. Sturgeon called after 5 pm Dallas time yesterday, Friday afternoon, for which I was most grateful. He and the radiation oncologist here in El Paso have determined that I am not a candidate for proton beam therapy because of the risks of the cumulative dose of radiation. Loss of vision, intractable headaches, stroke, seizures…major quality of life issues…have ruled out this treatment path for me. The recommendations are to continue monitoring with scans, treating new lesions with gamma knife initially and with standard surgery when gamma radiation limits are met or the tumor is too large.

Having explored the possibility of a new therapy like proton beam and realizing that it is not an option I am essentially at peace. This is how it is to live with a chronic illness. Options become fewer. New ones are considered. Some of them work and other doors close. The thought of going to Dallas for treatment and the consideration of effects and side-effects of the radiation and the medications kept my enthusiasm for proton therapy at a moderate level. February 2019 marks the 11th anniversary of my diagnosis with Stage IV ovarian cancer. God has proven more than competent and generous with the gift of my life.

A song comes to mind to share. I trust you will hear in it the peace and confidence that I do, accepting that this new information is God’s Providence.

https://www.youtube.com/watch?v=zY5o9mP22V0

it is well1

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protons and possibilities

shooting-star-3024333_960_720Today I had a teleconference with a radiation oncologist in Dallas regarding the possibility of “proton beam therapy” for the ongoing challenges of metastatic ovarian cancer in my brain. I’ve been recovering well after the surgery Dec. 14 and as I recounted my medical history for the specialist I was amazed myself at the quality of care I have received and the quality of life I have been graced to live.

Since many of you dear family, Sisters and friends have been waiting to hear the details of today’s consultation I think that this is the easiest way to give everyone the basic information. I met by video call with Dr. Jared Sturgeon of the Texas Center for Proton Therapy. This type of radiation is especially good for precision treatment of tumors close to vital structures like my optic (eye) nerve and areas that have already been operated or radiated. There is still a limit to the amount of radiation that can be given and he will need to do some calculations in consultation with Dr. Han who has done the gamma knife procedures here to decide whether more can be done without significant risk. If I am a candidate for proton therapy I would go to Dallas for five treatments over the course of five consecutive days. Dr. Sturgeon said that he will contact me for discussion of my options in 2-4 days and that generally the procedure can be done four weeks after surgery. There are two areas being considered for treatment with proton beam therapy- both having been operated and treated twice with gamma knife already.

brilliant-lightSo it’s more waiting time, wondering what the possibilities will be, realizing the gift of each day and the challenge of making each day count. I pray for an epiphany of light and wisdom for my team of doctors but also for ongoing illumination of God’s will in my life.

 

 

 

counting the costI am sure that everyone is aware of the tremendous ministry of hospitality being offered every day in communities like El Paso along the U.S.-Mexico border. This past week the daily releases of refugees seeking asylum have been in the range of 200-250, somewhat less than in previous weeks, but the hospitality centers and their volunteers have shown the flexibility and commitment to respond to whatever the demand.

I’ve mostly been sidelined from direct service but have been able to connect prospective volunteers to volunteercoordinator@annunciationhouse.org for information and to channel donations to Annunciation House (815 Myrtle Avenue, El Paso, Texas 79901 or online at http://www.annunciationhouse.org). We have also hosted Sisters of Charity, Associates and other volunteers at our house as space permits. In the past month we have rarely had an empty bed and occasionally had to resort to using inflatable mattresses and the living room couch! I’m restricted from driving for another week or so but with good grocery shoppers I’ve been able to keep our volunteers well fed.

Around our substantial table and in our chapel stories have been shared and prayers have been offered for the refugees, the volunteers, the sponsors receiving the travelers, the bus drivers and security screeners…and most especially for a change in the political will to reform our immigration system and to address the root causes that force people to  undertake the desperate journey to seek asylum. The stories that come from the encounters with the refugees are sometimes heart-breaking, sometimes heart-warming and inspiring. They take up residence in the minds and hearts of the volunteers. This is part of the cost of volunteering.

There are other costs that I observe and want to share, not as a deterrent to volunteering but so that prospective volunteers understand what they are likely to experience when they come to serve:

  1. The release of refugees varies each day. Hospitality centers receive guests depending on the number released and the availability of spaces as sites are activated or need to “stand down” for a time. This means that the volunteers have to be able to “go with the flow” and resources are shifted according to need.
  2. Shift coordinators at the hospitality centers are identified by Annunciation House staff. Oftentimes they are long-term A-House volunteers but sometimes they are still learning the ropes or shifting from one site to another. For people who are accustomed to a very organized and efficient operation this can feel frustrating and the temptation can be strong to “fix it”.
  3. Because there is a learning curve for the many movable parts of the hospitality center operation it is most helpful for volunteers to come for at least a two-week service experience. Spanish is helpful but not required. Having a car to help with transporting the refugees to the airport or bus terminal, do laundry or pick up supplies is also helpful. Finding your way around El Paso and the various hospitality centers just takes some time.
  4. Another reason to plan on at least a two-week stay is to give yourself some rest. Everyone has heard about the deaths of Jakelin and Felipe and the concerns for the health of the refugees. Volunteers are also susceptible to the physical challenges of the change of climate and routine. I am very hesitant to say that volunteers face risks of illness due to contact with the guests either directly or from services provided such as doing the laundry or cleaning the bathrooms. But I have observed many volunteers catching colds, flu and gastrointestinal issues during their time of service- resulting in the need to spend some days away from the shelters to recuperate and occasionally a trip to the urgent care or even the hospital. Physical stamina, mobility and communication skills are needed in order to volunteer effectively and enjoyably.

I offer these reflections in hopes that prospective volunteers will prayerfully discern the call to offer service. It is a privilege and a blessing to be able to accompany the refugees. I have missed being able to serve during the past weeks, especially as the numbers increased, people were being released to the street or bus station in the middle of the night, the political rhetoric became more intense and the current stalemate about a border wall emerged. I have had to consider the cost of volunteering and accept what God was asking of me. Hearing the experiences of the volunteers staying with us and receiving calls from others who want to come to offer service, I recalled this scripture passage:

“Whoever does not carry his own cross and come after me cannot be my disciple. Which of you wishing to construct a tower does not first sit down and calculate the cost to see if there is enough for its completion? Otherwise, after laying the foundation and finding himself unable to finish the work the onlookers should laugh at him and say, ‘This one began to build but did not have the resources to finish.’ Or what king marching into battle would not first sit down and decide whether with ten thousand troops he can successfully oppose another king advancing upon him with twenty thousand troops? But if not, while he is still far away, he will send a delegation to ask for peace terms. In the same way, everyone of you who does not renounce all his possessions cannot be my disciple. (Luke 14:28-33)

I hope that those of you who are considering a time of volunteer service will find these reflections helpful. May God give you the light to prayerfully consider the cost and respond as the Spirit guides you. And may we all pray for those who are daily offering direct hospitality to the refugees, making sure that they have shelter, food, clothing, assistance to connect with their families and sponsors and angels to help them on the journey.

[If anyone would like an information sheet from Annunciation House for volunteers I would be happy to forward that document.]

 

 

 

 

 

 

 

 

 

Feast of the Holy Family

nativity one

The Sunday after Christmas, the feast of the Holy Family, was always a time we went to Mass together. Our “family Mass” attendance, especially on this day, was expected and as the years have passed I have an even greater appreciation for the gift of faith and family. I am also aware of how problematic the definition of “family” can be for many today.

Today at our parish I was drawn into the nativity display prominent in the front of the church. “One size does not fit all,” I reflected as I noticed the hodgepodge of characters in the scene. Mary and Joseph’s heads were scraping the top of the stable. Baby Jesus looked to be at least six months of age. The angel was a miniature presence in the background. The shepherds were similarly diminutive and one was missing a hand! The sheep were gigantic, approaching the size of the burro. Oh well. It seemed a reflection of who can be the Holy Family of God today.

nativity two

Meanwhile, here at the border our “family” expands every day to include the refugees released from detention, pending the rulings on their petitions for asylum. We are the same kind of hodgepodge: all ages, many languages, different sizes, some broken…as my friend Fr. Bill is fond of saying, “The Incarnation is a messy business.” Through this beautiful Christmas season may we come to recognize in each other the Holy Family of God.

tail lights.jpegThe last days of December before Christmas, the end of Advent, are often overbooked and overlooked. For me the third week of Advent was a peaceful transition home after surgery and was dedicated to rest and recuperation. Our house was a center of activity for Sisters and other volunteers who have responded to the call for help at the refugee centers coordinated by Annunciation House and the  Catholic diocese of El Paso. Every bed was full (and the couches in the living room too, some evenings!).

I have yet to beat Sister Donna de Santos to the coffee maker at 5 am. She is out the door by 6:15 most mornings, heading to one of the hotel-shelters to serve breakfast. I watch the tail-lights down our dark drive and I feel overwhelmed with gratitude for Donna and the many others who are bounced from the warmth and comfort of a quiet bedroom in order to tend to the needs of mothers and fathers and little children who have spent the night on a cot in a classroom or a bunk bed at the shelter. I can only watch the lights disappear and give thanks for the ministries that I know will be provided all over our diocese during the day. And I can make supper!

Many hours later the volunteers arrive home with the stories: Ticket failures (purchased to depart from San Antonio instead of El Paso), long waits in the security lines at the airports causing fear of missing flights, sick children, tales of the perilous journeys and stays in detention facilities, uncertainties about asylum rules and changes in policies. We share these stories around our table. When the dishes are done we retire to our chapel for a quiet evening prayer. Our Advent wreath is adorned with the little travel papers with bus and airline confirmation numbers, names and destinations. May they have safe journeys and find guardian angels along the way to help them make their connections. We pray with the image of Our Lady of Guadalupe next to little Jakelin Caal who died in the custody of border patrol just a few hours from where we live. “Open our hearts and our homes to these brother and sister migrants,” we pray.  And continue to replenish our supplies of energy, compassion, and patience as we seek to live these last days of Advent.

advent wreath jakelin 1

These words of Howard Thurman impell us towards Christmas:

When the song of the angels is stilled,
when the star in the sky is gone,
when the kings and princes are home,
when the shepherds are back with their flocks,
the work of Christmas begins:
to find the lost,
to heal the broken,
to feed the hungry,
to release the prisoner,
to rebuild the nations,
to bring peace among the people,
to make music in the heart.

And so let us bring our Advent waiting and preparations to a hopeful ending so that we have what we need for the work of Christmas healing to begin.

Again

A scheduled three-month follow-up MRI last week brought the information that the cancer is back in my brain again. It has recurred in the same place it was removed last July, behind my right eye. I have had some off and on visual symptoms but was surprised at the news last Friday. The only option is surgical removal – again- so today I saw he neurosurgeon and am scheduled for a craniotomy on Friday, December 14.  That is the feast of St. John of the Cross, a Spanish Carmelite priest, reformer and poet. I”ll be learning more about him as the surgery date comes closer. Meanwhile I am already under the loving mantle of Our Lady of Guadalupe whose feast is Dec. 12. Already she is calming my heart and mind with her message of love and healing to Juan Diego. I receive it as my own and find peace beneath her mantle.our lady of guadalupest-john-of-the-cross-icon-925

While I would not choose this path, I accept it as what God is asking me to walk, the work of healing that God chooses to do in and through me this Advent. This season of waiting and hoping for increased light and warmth, for the Word to be made flesh among us again, to be born in each of us again, seems an auspicious time for the removal of these rogue ovarian cancer cells from my brain, in the area so close to my eye. Give me a clearer vision and insight, I pray, as I await healing of body, mind and spirit, through the intercession of Our Lady of Guadalupe, San Juan Diego, St. John of the Cross and in the name of Jesus who comes to be born in us again.advent wreath guadalupes

 

“recalculating…”

Since other options for GPS have come into broad usage I don’t often hear this message when lost on the road. It came to mind during this past week of my recovery when I was aware that two friends of my own age with whom I had the blessing of collaborating in ministries here at the U.S.-Mexico border years ago were inaugurating and concluding treatment for cancer. A missionary priest was waiting on tests and treatment plans that would set his course for the next weeks and months. A religious sister posted a video  when she rang the bell indicating completion of twenty-five radiation treatments. Starting treatment…receiving treatment…marking milestones…being restored to health…celebrating…and recalculating…

I used to think that the stages of the cancer experience were fairly distinct. I have written about the transition from diagnosis to treatment to recovery to remission to surveillance as though it was quite a linear process. The category called “survivorship” has never rested well within my lexicon. It seemed too presumptuous. Really, this little picture that showed up on my Facebook feed expresses the journey best for me:

writing straight with crooked lines

Can I flow with this kind of a plan? “Yes” has been a good answer. Where the little loops intersect are the celebration points: home from the hospital, ringing bells at end of cycles of chemo or radiation, clean scans and good tumor marker results.  Where the path dips down or heads off in a direction I didn’t anticipate are times to breathe, to allow, to draw on the resources that I’ve discovered during the past ten years.

This is what I want to share today, wherever you find yourself or those you are accompanying on the cancer journey. God works within the openness of your body-mind-spirit from the starting gun to the finishing bell. Another well-known image expresses this truth. footsteps1

Trust God to do the recalculating.

 

 

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