26

November 30

Church of St. Mary, Willmar

A blizzard took over the last day of the pilgrimage, but Scott watched the radar closely and I kept checking Mass times in churches we had not visited. The storm cleared a path to St. Mary’s. The modern church with mural-esque stained glass windows and two octagons in the ceiling created the feeling of being in a hive. Also apparent was the Hispanic ministry in messages in the narthex in English and Spanish and misselettes in both languages too.

During his homily, Father Verhelst  spoke about the difficulty in staying awake with the shorter days and winter as a season of darkness and dormancy, but also Advent’s call to stay awake and be involved, involvement likened to Matthew’s gospel 4:18-22 where Jesus told Peter and Andrew he would make them “fishers of men.” Light. Hope. Activity: Buzzwords for the season accompanied a call to be attentive to the caring of Christ in our daily lives in acts of kindness and truly doing good unto others.

Father Verhelst asked, “If you know eight hours before that Jesus is coming, what would you do?” and answered, “Look busy!” He suggested not having  the motto “wake me when He is near” but instead to use this Advent season to start being attentive to Christ on a daily basis to be busy with the work of justice and acts of kindness.

Spiritual Healing

In the month, I had prayed for healing, for my tumors to disappear and no new progression. Instead I got healing, spiritual healing. Deep and powerful, rich and fulfilling. And, ultimately, so much better than physical healing. Be careful what you wish for? No, I think it really is coming to the Lord with all your fears and giving over all control in trust.

This last sermon left me with a charge to continue to focus on my faith every day, to work in social justice and with kindness toward others instead of being so self-centered. This message helped propel me to write and the writing helped give me purpose, catharsis, and peace. During the process, I struggled as a writer to find the words to shape and hone the sentences to convey the message. It was a challenge to write in past tense, my fingertips recoiling on the keyboard in protest. I relived the full range of emotions in  the journal I started on the night I was first diagnosed, email, and CaringBridge posts. Some days neuropathy made it more challenging to type, the old nerve endings dulled or tingling. I struggled at night to sleep as I relived the past diagnoses and felt the fear and anxiety bubble back up during the day. But telling my story helped me appreciate my life even with all the spiculated masses and mutant cells. I wish I had enough drawing chops to illustrate what they look like to me.  Children of the 80’s may recall the Crest toothpaste monsters that chanted “We Make Holes in Teeth.” Cancer to me looks like those beasties only dingy gray and less humanlike, more mutated. Ultimately, I wanted to write something I would want to read with the intent to offer solace, humor and truth. And I wanted to create something that would linger.

I learned about the Kubler-Ross stages of grief in college psychology class and later learned they might not be the be-all, end-all. Cancer definitely had many of the same characteristics for me.

Denial: It was more of a surreal questioning. Do I really have cancer? Sometimes it was an out-of-body experience when I heard myself tell others and not believing it myself. But the physical manifestations of treatment made it impossible to forget, especially hair loss. Though not particularly painful, seeing myself bald or with hair so short was a sharp reminder.

Bargaining: My faith kept me from offering suffering as a penance or promising to do good works; I knew I could not trade off my illness.

Acceptance: It was not until I was stage IV that I fully accepted that cancer was going to be my demise. I tried to tell myself it was like a chronic disease since chronic was less of an affront than terminal. I shuddered even as I typed it.

Depression and anger: These bugbears  were really not my experience thankfully as of yet.

Overwhelming Support: The powerful collective of family and friends that supported us with food, socializing, and prayer was a constant with each diagnosis. I would also place treatment here and the relief that having a plan brought after new tumors were spotted. This was not a Kubler-Ross stage, but definitely part of every diagnosis for me.

I would be remiss if I did not use this as a charge.

Soapbox on: Please summon the courage to have a will drawn up. Check every financial account so that all assets are set to transfer to your designated beneficiaries upon death to avoid probate. Even your safe deposit box needs to be set up or descendants will have to go through probate to open it. Dragging your family through extended legal and financial wranglings is distressing plus wastes your hard earned money. Complete your advance directive AND file it with your primary care clinic. Don’t make someone else guess what you want when you cannot communicate it.

A good friend who has also experienced breast cancer works as a  primary care provider for CentraCare Senior Transitions, delivering care at assisted living and memory care facilities I asked her to help me explain the wonders of hospice. I mentioned it in our experience with Mom and Dad’s last weeks, but really want to spread the message:

The biggest misconception about hospice is that one only has days or weeks to live. Hospice is a beautiful gift that everyone deserves.  I order this wrap-around service as soon as my patients have a qualifying diagnosis/s.   My goal for the patient and family is that they have the best quality of life during this most precious journey of life.  I have had patients on hospice for up to 3 years!! Yes, that is correct, 3 years. You see, it is the diagnosis that qualifies them.  For some, the diagnosis may take them from us in 6 months or less. Hence, the sooner hospice services are on board, the sooner the patient and family receive the benefits.

I have found that many patient’s condition improves once in hospice due to all of the wrap-around services.  Services include registered nurse visits, nursing assistants for bathing ect., music therapy, massage therapy, spiritual care, pet therapy, social work assistance, and in non-covid days, volunteer visitors.  Patients can accept as much or as little of the services they wish to receive. The frequency of the visits depend on the needs of the patient.

As a provider, some wonder if I am giving up on them and that is why I order hospice. I never give up on my patients, I only want the best for them.  I suggest, and order hospice to bring them more care and a higher level of care than they currently are receiving.  Hospice is provided where the patient lives.  It could be their cabin, fish house, home, care center, their children’s home, anywhere is appropriate for hospice. Hospice also provides equipment and supplies, everything from incontinent products, to commode, bed, special mattresses, and many more items one needs along the way.

Patients and families need to be comfortable with people in their homes and know that the services of hospice are not 24/7.  Family and friends need to be on board to help keep patients safely at home.  If the patient’s family is unable to provide the care at home, hospice will arrange for transfer to a skilled nursing facility or hospice house.

The best part of all is that it is FREE!! Insurance and medicare/medicaid cover the services.

The end of life journey is sacred and precious.  It is an honor and privilege to travel with my patients and their families, along with my own family members.   I have gained far more than I have given to my own family, my patients and their families as I walk with them to their next life.  The tears and the laughter will never be forgotten.

I am God’s servant and this work is very humbling.  If I could have my dream job, it would be to work full time in hospice.  Laying my hands on these precious people and spending the last days, hours, or minutes with them is the most sacred and rewarding gift God has given me. I am truly blessed. To work as their caregiver and primary care provider would be the best job ever!!!  GOD IS SO GOOD!

Off Soapbox.

Briefly, I contemplated fleeing the scene, disappearing to skip reality to avoid bringing pain to my family and so I could avoid seeing them in pain or else being so disagreeable they would miss me less, but that lasted less than the time it took to type this sentence. There are many expressions to soften death: passing on, in a better place, at peace, at rest. In Senegal there is a colloquial phrase: when someone dies you say that his or her library has burned. I had a huge library.

The more I was close to those dying, the more parallels I saw in birth. There is so much planning in birth yet the actual time is still not exact. The same with death The medical staff are well versed in the signs for both and know how to deliver the news that time is imminent. And ultimately, God is in control in both situations.

Memento mori is an object, like a skull, that reminds us of death.  I felt my cancer was my memento mori and as much as I hated it, it brought spiritual clarity I doubt I would have experienced otherwise. I felt closer to death but so much more aware of life and definitely knew that the more I learned about death, the more I understood life. I had little biblical background but set to reading bible histories to better understand the timeline. I had attended Mass throughout my life but memorized precious few passages from the bible.  I listened to the readings, I was a lector and read them, but I could not quote the bible to save my life, but now found passages that would be tattooed on my brain like Romans 12:12 “Be joyful in hope, patient in affliction, faithful in prayer.”

I had joy. Joy is different from happiness, which is circumstantial, which can be fleeting like when we want something and are sure it will make us happy and it does until we want something else. Joy, as defined by Father Mike Schmitz, is “the pervasive and abiding sense of well-being.” And having joy made me grateful and being grateful brought me joy in a wonderful sustaining loop.

The longer I lived with uncertainties, the more having certainty bolstered my mental health. Having a positive attitude made the days easier along with having events to look forward to and goals to achieve.  I had a formula: a cautiously optimistic approach with my adjustable threshold of hope, a focus on enjoying the moment/appreciating the day, being careful not to ruminate over the past or dwell too much in nostalgia, and also not worrying excessively about the future. The balance of hope and worry was exacerbated by the COVID-19 pandemic.  I observed a lot of shared aspects between COVID and cancer–loss of employment, fear of the unknown, no cure (initially), being homebound, cancelled plans, and the underlying frustration that was part of all of the aforementioned:  loss of control. I also observed many reactions to the pandemic that fit into Kubler-Ross’s stages of grief.

Ultimately, we all have to carry our own cross. I would not have picked a life uprooted by cancer, my own body’s mutiny, but I was able to accept my cross and find joy even while dragging it around. “Rejoice to the extent that you partake of Christ’s sufferings, that when His glory is revealed, you may also be glad with exceeding joy.” 1-Peter 4:13:16.  Exceeding joy–I beat cancer.  It died but I get to live on.  Suck it mutant cells! I was no longer as anxious about the number of hours before Jesus arrived because I wasn’t just always looking busy, but keeping busy.

Memoirs focus on a smaller part of a life unlike biographies covering the whole. Unlike fiction, there might not be a climax, but for me, there was a seismic shift. The warrior cancer battle metaphor did not fit me since it was done to me, but my spiritual growth, the healing of my soul was a salvation battle that I fought and won. Would that I could have been cured from cancer, but having grace and faith was a cure for life.  Prisoners often find religion in their confinement; cancer confined my life in many ways, but it also helped propel me to look within and beyond myself.