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Yesterday after completing my first day of hospice care and Psalm 23before turning out the light, my Sisters and I listened to Fr. James Martin’s Examen from the first Sunday of Lent. The prayer helps you review your day with God, helping to pay particular attention to where God has been present to you or where you notice you have missed God’s presence. As Fr. James says, to, “Just notice.”

For me what I noticed was that I had barely to lift a finger or even turn over in bed before someone would say, “Do you need something?” I always had everything I needed. That realization reminded me of the experience of prayer eleven years ago on the night before my first surgery. With so much unknown ahead of me I distinctly heard a comforting message, “You have everything you need.” Later, I made the connection between this reassurance and the opening line of Psalm 23, Elizabeth Ann Seton’s favorite: “The Lord is my Shepherd, I shall not want.” Isn’t that just another way of saying I have everything I need? I shall not want? Throughout the day today as calls and messages have poured in, I know that I am being supported with love and prayer from all directions, and I am so grateful.

finchAs with the psalmist, I can truly assure you that as the Lord is my Shepherd, I shall not want and I do have everything I need. But keep those prayers coming! Though I am missing the traditional Lenten fish fries, I have beautiful bright yellow finches at a feeder hung outside of my window by S. Andrea, delicious and nutritious food prepared by S. Annie and friends, medicines administered by S. Peggy and massage with other complimentary therapies administered by S. Carol and colleagues, and even my blog scribe all in the comfort of Casa de Caridad. So thank you for your on-going love, support and prayers.

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Coping With Hope

This is the first time I have used a scribe to write my blog. But thanks be to God my Sister of Charity Halifax friend Maryanne is visiting and is willing to serve in this capacity.  My fingers have a hard time finding the home row on my keyboard because of visual deficits as I mentioned in my last blog, all a  result of the metastatic ovarian tumors in my brain.  Since my last posting further tests show the tumors growing and there are no good surgical, radiation or chemo options.  I am grateful to be able to share this part of life’s journey as I have for the past 11 years since diagnosis with stage four ovarian cancer.

When I spoke with my oncologist yesterday, we both agreed that as women of faith this journey as patient or as physician is different.  She said, “I have my medicines and treatments to offer but we know that God has much more.”  I raised the topic of what to expect as the disease progresses and what is available to alleviate the symptoms. This is known as palliative care. “What are your feelings about hospice she asked?” I said that in my personal and professional experience most times people wait too long to receive the real benefits of hospice and she agreed. Being honest and clear about my illness and sharing my experience with transparency has been a great gift for me.  And, I hope for others on a similar journey. It does not mean that I have given up hope but in fact it helps me to live in hope. Those nearest to me will know that my hope is founded in faith and fueled by gratitude for my health care providers, friends and caregivers.

I have discovered some wonderful resources and I would like to share at least one with you. “Everything Happens With Kate Bowler” podcast     Episode: Emily Mc Dowell There’s no good card for that     https://katebowler.com/emily-mcdowell-no-good-card-for-this-s2e1/  I hope you’ll take time to take a listen especially if you or someone you love is dealing with a terminal illness.

I want to share that I am at peace at this point on the journey.  I am grateful that I was able to visit my family in Indiana last week.  Although this illness has presented the experience of diminishment, each little letting go is practice for letting go into God. For example, I am no longer driving but learning to rely on others which is not necessarily a bad thing. It is still a challenge to give myself permission for an afternoon nap knowing the numbers of refugees being released and in need of shelter and hospitality each day, wishing I could be there, but that is not my present call. All of this brings me back to a favorite prayer that I asked to be whispered into my ears at the time of my initial surgery “The Prayer of Abandonment” by Charles de Foucald contains the line “Whatever you may do I thank you I am ready for all I accept all.” I pray that this is true for me and I invite you to pray it along with me and for me.

 

 

The miracle of vision- and its complexity of turning stimuli of light beams into eyesight as well as “insight”- has long fascinated me. Now that my visual acuity is challenged by persisting brain metastases the miracle of how I see intrigues me even more. A very experienced and conscientious ophthalmologist detected gaps in my visual fields back in 2017 that led to the diagnosis of the problem. When I returned for further help last week he documented that now almost 25% of my visual field is compromised. With either eye or with both eyes, though I can read the eye chart “20/20” corrected with lenses, I am missing what is in front of me because of three persistent ovarian cancer tumors, documented on a high-tech MRI on Wednesday.  My team of specialists is exploring options for more treatment but these are limited because risks outweigh benefits in some cases (radiation/surgery) and the “blood-brain-barrier” (chemotherapy).

I can see that this is a new landscape for me to walk and for others to walk with me. Surveillance, diagnosis, treatment, recovery, remission…I’ve figured out how to walk that path over the last eleven years. Now the road is taking an unfamiliar turn. Reflecting on this as I walked down the driveway one bright morning last week I asked myself- and God- “How do I do this? This is a new place.”  I’ve continued to walk and wonder on other days. I believe that I can learn to walk this path  because I have been blessed to have accompanied others who found their way along it. One thing that I have learned in those sacred  travels is that as much as we would like to have a timetable, there is absolutely none to be had. Detours, breakdowns, road hazards, and even an occasional scenic overlook change the estimated times of arrival or departure.

we walk eye chart

It is helpful for me to remember the Big Picture, even when parts of it are blocked from my view. “We walk by faith and not by sight” (2Cor 5:7) is going to be my mantra. Those of you who are also on this journey or accompanying others along their way might find the full context of this scripture passage (v 1-10) might be helpful:

 

 

 

Our Future Destiny 

“For we know that if our earthly dwelling, a tent, should be destroyed, we have a building from God, a dwelling not made with hands, eternal in heaven. For in this tent we groan, longing to be further clothed with our heavenly habitation if indeed, when we have taken it off, we shall not be found naked. For while we are in this tent we groan and are weighed down, because we do not wish to be unclothed-but to be further clothed, so that what is mortal may be swallowed up by life. Now the one who has prepared us for this very thing is God, who has given us the Spirit as a first installment. So we are always courageous, although we know that while we are at home in the body we are away from the Lord, for we walk by faith, not by sight. Yet we are courageous, and we would rather leave the body and go home to the Lord. Therefore, we aspire to please him, whether we are at home or away. For we must all appear before the judgment seat of Christ, so that each one may receive recompense, according to what he did in the body, whether good or evil.” (Take a look and listen to Marty Haughen’s lovely interpretation of this scripture:https://www.youtube.com/watch?v=6hk_7EUvwv8)

Still so much to learn along this journey. I will keep you updated but in the meantime appreciate your prayers and patient accompaniment as I wait to know the options and make decisions based on my belief in the Big Picture.

starry night

 

 

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

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.

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