Month: August 2017

The Venn of Two Deaths

We all share the same four chemical bases in our DNA thymine, adenine, guanine, and cytosine. They are assembled differently in each of us to create a unique human. Yet as unique as our DNA makes us we overlap with one another as a Venn diagram in varying degrees. Donna my wife died August 2011. A neighbor and friend M died this week. Where Donna and M differ and where they overlap in their diagnosis’s and death is telling about death and dying in America.

Diagnosis

Donna was diagnosed January of 2009. She had an X-Ray that showed some lesions and subsequent PET that confirmed Stage IV cancer. Donna was told she had Stage IV via voice mail at her office by her primary care physician.

In 2015 M discovered a small lump in her right breast while in England. A lumpectomy was performed and nodes were harvested. There was no distant cancers discovered in the nodes. A biopsy on the tumor show triple negative. Upon returning to the US radiation was performed and she was told she was cancer free. Four months ago M was having breathing issues with shortness of breath upon exertion. After a month of adjusting her Afib medications her cardiologist recommended she go to the emergency department of a local academic hospital. She remained in the ED for 36 hours during which she received an X-Ray of the chest determine if there was a pulmonary embolism. A PA came to her bed in the busy ED and told her you don’t have an embolism but there are lesions on your bone which is  cancer. M was discharged.

Donna was much younger that M by about 16 years. Donna had no underlying medical conditions. M had Afib.

Post Diagnosis Care and Treatment

Donna had a primary care physician (PCP) for over 20 years. Dr. S was my PCP as well for about 25 years. Even though Dr. S was a bit ham fisted with the voice mail about her cancer, he got Donna in to see the head of oncology at the academic hospital he has privileges at. The oncologist Dr. B. was simply said, amazing. He was caring, smart, focused on Donna, and became her team leader. During Donna’s first visit with Dr. B. he made it very clear to Donna. “I am your primary care physician from now on. Any physician or healthcare professional you see they check with me about any care they are giving you so I can manage it with them.’ From that point on all care and treatment up to and including hospice was lead by Dr. B.

Donna had a craniotomy for small tumor and Dr. B recommended a highly skilled neurosurgeon who we liked greatly and did an amazing job. Following the craniotomy Donna had whole brain radiation. There were issues with the radiologist. He was data driven and not entirely honest regarding hair loss. Of all the team members Donna had he was the least skilled at delivering complete care for her and communicating well. I believe this was age related since he was very young. His clinical care was excellent but there is more to radiology then math.

For the next two and a half years Donna had three rounds of chemotherapy. The first round stopped progression and shrunk two of the tumors. The chemotherapy that first round cause some nausea but not much else. Nearly 10 months later the tumors were growing and a second chemotherapy was started with less side effects. And the tumors again shrunk. In all her treatment was manageable and responsive. Dr. B gave us his cell number and we could text him any time or call. He was very responsive via email as well.

M did not have a primary care physician. She had a cardiologist for an underlying issue. The cardiologist management of M ended with the cancer diagnosis. At this point the radiologist who treated M breast cancer a year and half earlier and who M respected recommended an oncologist within the hospital system. M’s daughter and I went with M to see the oncologist on the initial visit. This oncologist was not Dr. B. she was clinically skilled but the issues with communications and listening to M and her daughter were lacking. M made it clear she did not want any chemo since this was Stage IV. The oncologist already had in mind a treatment plan and presented it without consideration for M’s clearly stated goals. This oncologist also recommended a PET to determine and extent of the disease as well as a biopsy. Again the oncologist was focused on delivering what she thought was clinically best care and not what M wanted.

M had the PET. Refused an MRI to look for lesions in the brain. M also was reluctant to have the biopsy but did.

Following these tests M, her daughter, and I went to see the oncologist for her second visit. The oncologist offered an oral chemotherapeutic agent and a bisphosphonate injection. M got the injection and filled the Rx. A major quality of life issue for both M and her daughter was the shortness of breath and how M was having great difficulty walking more than a few feet. The oncologist told M that her lungs were clear and said she thought this was an issue of the cancer in some way or perhaps part of the cardiology issue. M and the daughter could not get a clear concise answer. They were both frustrated. M asked about prognosis. That was more difficult for the oncologist as it is for any physician. M and the daughter asked about the biopsy. It took 10 minutes and a two different sites for oncologist to say I don’t have the results from a week ago. Finally she found the pathology report and said it was not complete and had to be redone but it was highly likely the lesions were from the breast cancer and were diffused.

M and her daughter left frustrated and unsure of what was going on. M went home and began the oral chemo. The shortness of breath remained the major issue that remained unaddressed. Over the course of the next two weeks M was growing more tired and the breathlessness was debilitating. The daughter called the oncologist frequently regarding the breathlessness. One rather tense call that offered no help or resolution the oncologist said that M was not her only patient. Finally M went to the ED one early morning. The ED attending sent her for an MRI. A pleural effusion was identified.

It was at this point the relationship between M, her daughter, and the oncologist broke down. The oncologist was still recommending chemotherapy. M was still saying no way. When the PA noted that on the original PET that there was some fluid in pleural cavity. M’s daughter was livid that it was not noted earlier. The oncologist was defensive saying it was very little fluid. Words were exchanged.

M was admitted for a throacentesis. On the unit M came under the care of the hospitalist.  A pulmonologist was brought in to perform the throacentesis. The oncologist remained a participating team member and was still talking chemotherapy. Following the throcentesis breathing returned to normal. M said to me, “This is amazing I am feeling so much better like life is worth living.”

M and her daughter while in the hospital met with the social worker and began the process of applying for home hospice. M was discharged and went home. A local company providing home hospice support.

Hospice

Once home and the breathlessness largely resolved M rested and was doing well. Ten days to two weeks post discharge the breathlessness returned and in the middle of the night an ambulance was called to admit M to the hospital. The pleural effusion had returned. M was scheduled for a second throcentesis which would be done at an other facility. Placement of a drain was recommended in order to avoid continued pleural effusions. This time the wait for the throcentesis was ten hours.

M got back to the hospital late that evening completely exhausted. For the next week M’s daughter took on the task of finding a hospice or nursing home for M. During this period M was bedridden. She had stopped eating and was awake and talkative for short periods of time before falling asleep. I saw her each day with a kale spinach pineapple mint, and apple smoothie. She remained sharp and funny.  Her daughter was fighting to find a place for her mom and doing all the end-of-life paperwork. M was denied hospice because she was, as described by the hospitalist, “not actively dying”. M died a week after her second throcentesis in the hospital. Her daughter was with her and aggressively intervene to stop life saving measures being taken, M had in place a DNR.

Donna was in the hospital and had two throocentesis’s neither of which was successful. It was after the second on that Dr. B her oncologist called a meeting in Donna’s room to discuss palliative care and home hospice. As well as that meeting was orchestrated and run Donna shut down. I was contacted by the hospice group and set up home hospice. The effects of the whole brain radiation was beginning to present with Donna. Delirium was beginning as was Sundowning Syndrome. The palliative care team noted that her most recent MRI shown thinning for the cerebral cortex which is consistent with Alzheimer’s Disease.

By the time it came to bring Donna home, one week after her admissions for the throcentesis, Dr. S (our PCP), Dr. B., and the palliative care team recommended that Donna be admitted to the in patient hospice unit. They were not convinced that at home hospice was the best for Donna nor believe I could deliver the care she needed. On July 18, 2011 Donna entered the hospice where she remained until August 7 when she died. That is the median time for patient stays in hospice.

Donna deterioated over the weeks in hospice. First slowly and then more rapidly. Dr. S and Dr. B came to review her charts, not much to review, but mostly speak with me. There was absolutely no abandonment of Donna when she transferred to hospice from her primary care team. In addition to Dr’s. S & B there was the palliative care team, the social workers, clergy, and volunteers who were there for her and me. We were embraced at the the single more critical time in both our lives.

The Part of the Venn That Didn’t Overlap A Patient Advocate

M and Donna both died from cancer. The diseases were different but the clinical path for both were similar though the time frame was longer with Donna. The difference that stands out for me was the clinical team.

M did not have a primary care physician who had 20+ years of medical care. Donna did. M did not have an oncologist that was brought into to treat her by her primary care physician. M did not have the an oncology team on hand when she was home during her short treatment. Donna did. When M was hospitalized she had to rely on a hospitalist. Donna had an oncologist who had cared for her for two and a half years and a primary care physician who cared for her for 20+ years. Both were active when Donna was admitted.

Clinical care for M met the standards of care and was delivered skillfully. The weekly change of hospitalists was smooth because the charts were done daily. What M and her daughter did not have that Donna and I had was a team that advocated for Donna, communicated among themselves, and delivered the care that Donna wanted. There were the clinical advocates for Donna and me. M had a clinical team that advocated for standard of care. (That may be harsh and that is unintended on my part.)

The single most important thing you can do for your healthcare is to find a primary care physician and create a long term relationship. Over time the physician will understand the goals and desires you have for your healthcare. They will know your medical history as well as anyone can. They, hopefully, will become your advocate for you if you are seriously injured ill or facing difficult life decisions. The primary care physician is your single most important advocate.

Mail to Self News Feed #3

I found the Mail to Self app a year and a half ago. It is genius in its simplicity and productivity. At the same time maniacal in the burden of its output. Where I mail a ton of articles to read later, which pile up. Here is the recent few to share in my personal News Feed.

A letter to … the kind stranger who shared her grief with me

From The Guardian with a single clear message for all who grieve.

 “Try not to hide your grief,” you said. “If you talk about it, you will discover so many other women who have been through what you have been through and talking about it honours the sadness and helps everyone.”

I couldn’t agree more, honor the sadness and find a way to help others.

Grief Has Many Steps

This is a two part series published in Umpqua Post out of OR. Part 1Part 2

Part One discusses the stages of grief less from the Kubler Ross Five Stages and more from the idea grief is not on a schedule and it is unique to all of us.

“They state that normal grief usually only lasts six months or less. A prolonged grief reaction lasts longer than six months and includes intrusive thoughts related to the loss of the person, intense feeling of emotional pain, or yearning for the lost person.”

Part Two takes a look at who is at risk for having a difficult time with the loss of a loved one.

 “If a person was highly dependent on the relationship with the person who is gone, dealing with the loss will often be much harder. Those who have poor social support or history of abuse or neglect themselves will often have prolonged or abnormal grief reactions. And one of the most difficult losses to deal with is the loss of a child.”

The article ends with this, which fits with my writings, podcasts, and book.

“All sorrows can be borne if you put them in a story or tell a story about them,” said the writer Isak Dinesen.

Excellent

When Grief Looks Like ¯\_(ツ)_/¯

An interview with Rachel Ward a podcast producer with Gimlet. Her husband died unexpectedly at age 35. Rachel was 32.

Sudden death vs. a prolonged terminal diagnosis is different but the grief feels the same.

“Um. I actually feel moderately okay in my grief. Like I feel like I understand like some of the dynamics of like when in the year I’m going to feel a little less capable or more capable. Among people that I already know I feel pretty comfortable bringing him into a conversation and being like, “Ah, Steve used to say this really funny thing.” So in relation to my own grief like I think I’m going to give myself a 6 out of 10. The thing I worry about is being like stuck a little bit.”

A very comforting. Listen or read the transcript.

Transactive Memory Extending Our Own Memories

I’ve written about the the inherent reflective nature of my loss and grief and how memories of Donna and our life would come in fits and starts. These moments become fulcrums to move my life forward and advance my self knowledge, us (Donna & I), and living in this world. This simple idea of ‘I remember this‘ becomes more complex when examined from what is not remembered. We don’t know what we don’t know. Like wise you don’t remember what you don’t remember.

Donna did not dwell on her illness. She did openly fear her eminent death. She gave me her illness to manage. Any thoughts of death any fear of death were held tightly in her heart. Donna wanted to remain alive and to live as she always had, on her terms. The interruptions of doctor visits, treatments, side effects, and pain was when she stoped to recognize the disease. As quickly as that happened it disappeared into my hands. My area of expertise/skill was managing the day to day disease. Getting her, nah going with her, to all appointments. Making pill packs at home.

I’ve attributed this division of labor to Donna’s desire to be disease free, it was not about denial as much as it was about division of labor. As a couple, I suspect like most couples, we’ve always had a division of labor. I would do the cooking. Donna would buy the kitchen items, dishes, pots, pans, etc. since they had to fit with the design of our home her visual eye. I would be the one to change the sheets. Donna selected the sheets and cases.

Transactive Memory

It turns out that this is Transative Memory. Transactive Memory is the fact people in continuing relationships  (in organizations as well) become specialized in different functions of labor within the relationship. Part of that specialization is the ability or skill set where the various members of the relationship manages different knowledge domains. One parter may remember all the details of what is needed to manage specific a area, Donna knew what sheets, shams, duvets, etc that went with what for each season. While I would be the one to change the sheets in a heartbeat. This is Transactive Memory. We used each others memories as our own. I didn’t not need to know color or style. Donna didn’t need to know how to make clarified butter or a hospital corner.

Transactive Memory in romantic relations improves self-esteem, life satisfaction, and happiness. Add to these benefits emotional support, companionship, and security. (Donna and I felt so very secure around each other and with each other.) It is postulated that romantic partners pool cognitive resources to increase our collective memories/information with less work. This pool of cognitive resources created a rich network of memories for us and after her death for me.

“Additionally, because people know about each other’s expertise (and non-expertise) they can make judgments about the reliability and value of any information conveyed. It is easy to see how a shared transactive memory system might work to help couples navigate their daily lives with ease and efficiency.”

The interesting part about Transactive Memory is that the theory and research shows that it is about the transaction or communications between members or a couple to encode, store, and retrieve information. Donna could give me a look and I knew what needed to be done. Or I could look perplexed and she would jump in. At the center of this theory is cognitive interdependence where the individuals depend on the knowledge of others and the outcomes are dependent on their knowledge. I learned to cook as a child. Donna was not a cook. So cooking became my knowledge area.

“…recruited couples who had been together for at least 3 months, and found that they used each other as extensions of their own memories, outperforming pairs of strangers at remembering category exemplars in different areas of expertise (for example science, food, spelling).”

Remembering What You Don’t Remember

Those memories (skills) Donna had died with her. Though they were effectively removed from my heart they were not lost as much as witnesses to deficits in my life now. Twice a year when I am faced with changing the shames and duvet I remember what I didn’t remember, Donna did this. This loss is not the same as loss and grief of Donna but the reality that we played well together and made each other better. I grieve for that balance between us where we as Donna and Mark would create new and better and do faster and more effectively.

When you remember what you don’t remember the hurt is as real.

Mail to Self News Feed #3

I found the Mail to Self app a year and a half ago. It is genius in its simplicity and productivity. At the same time maniacal in the burden of its output.

The app is added to your phone. You enter an email address into the app. After that when you swipe up or go to share a web page, article, etc. there is a button for Mail to Self. Just tap it and whoosh you got the article URL etc. in your inbox. The workflow is this. I will keep looking at my news feed, my papers, my sites, etc. and just mail to self to read later. Not so fast. My inbox is filled and I am not reading later cuz I got the attention span of a gnat

To repair the gnat in me I am going to post twice a week some of the articles I mailed to self. This is a way to share them with my non/imaginary readers and to force me to achieve inbox zero.

Spiritually Speaking: Grief sticks around after the flowers wilt

Beryl Schewe writing in the Eden Prairie News offers a unique way to address a loved ones grief when words fail us.

If only grief were so easy. Long after your flower arrangement has composted, grief lingers on. Grief has a way of showing up like an uninvited houseguest who refuses to leave.

Schewes’ idea is to send a book. She offers a selection of five books one of which includes C.S. Lewis’ “A Grief Observed” which is my favorite read that I have returned to frequently. Hop over and take a look.

TED Talks: What Makes Life Worth Living in the Face of Death

Lucy Kalanithi

This is a stunning and powerful TED talk by Lucy Kalanithi a physician whose husband was diagnosed with Stage IV Lung Cancer and died 22 months later.

Much of what she says and addresses are very close if not similar to what I felt and what Donna did with her life after her diagnosis till her death. Donna and her husband Paul may not be identical but the one point Lucy made that rings true for both Donna and I is this:

“Our job isn’t to fight fate, but to help each other through. Not as soldiers but as shepherds.”

I was the caregiver and her shepherd. She became my muse and a shadow for the remainder of my life.

There’s a poem by W.S. Merwin — it’s just two sentences long — that captures how I feel now. “Your absence has gone through me like thread through a needle. Everything I do is stitched with its color.”
Oh so true.