Katie’s Belief in a Traditional Buddhist Burial

Buddhists take a positive stance when it comes to death: the best way to approach it is without fear.  Two of the most important aspects celebrate life more than they dwell on death.  “It is only by recognizing how precious and how short life is that we are most likely to make it meaningful and to live it fully and by understanding the death process and familiarizing ourselves with it, we can remove fear at the time of death and ensure a good rebirth.”

 

Among Buddhists death is regarded as an occasion of major spiritual significance, both for the deceased and for the survivors. For the deceased it marks the moment when the transition begins to a new mode of existence within the round of rebirths. When death occurs all the karmic forces that the dead person accumulated during the course of his or her lifetime become activated and set about determining the next rebirth. For the living, death is a powerful reminder of the Buddha’s teaching on impermanence; it also provides an opportunity to assist the deceased person as he or she fares on to the new existence.

 

Burial is very rare in the Buddhist religion as the act of cremation symbolises the release of the deceased’s soul from the body allowing the re-birth of the soul.

 

Among the important principles leading up to a funeral in the Buddhist tradition, believers practice mindfulness and gratefulness for their lives before they reach their deaths.  A great deal of personal, spiritual work goes into planning for death, which understandably lends one to have a positive outlook and some amount of control when their time comes.  Whether practicing Buddhism or not, it seems there are many valuable ideas we can take and use toward our own relationship with death and end-of-life experience.

A Conversation w/ Svetomir Markovic

Dear Jenna,

I just wanted to express my deepest condolences and most heartfelt sympathy to you and your family for Katie’s passing.  I feel blessed to have known her for ever so briefly.  Every time I spoke to her my day seemed just a bit brighter.  I wish we could have done more for her.  Despite everything we tried, we just couldn’t stop the wrath of the cancer.  We need to work harder to find better solutions for this disease; I just wish we were a bit closer to the cure.

 

If you or your family ever need anything, please let me or our “ninja” (Dr. Kizlbash) know.

 

Take care,

SNM

 
 Markovic, Svetomir N., M.D., Ph.D.
 
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Thank you so much,  I may say that a thousand more times in my lifetime, but my family and I were given the gift of you, Kizzy, and the rest of Kate’s team(s), and we will remain eternally grateful.  There was always a sense of solace knowing that she had the very best soldiers on her front line.  It is hard to not let our wheels spin with questions and “what ifs”, and you guys have really confirmed that we, mostly she, did everything possible.  In our conversations about death, we often talked about how we would support Katie if she ever decided to not fight, (she often referred to “My Sister’s Keeper”) and it was only the night before she died that she looked at me and said for the first time “I don’t want to do this anymore”.  I simply texted Kristine those words, and we just knew, like you must have when you saw her Tuesday morning.  The thing is, I don’t think Katie would have ever given up the fight we all so believed in, her body had to simply shut her down because the valor and determination of her mind was so strong.  I keep replaying that morning over and over again in my mind, plagued with feelings that I should have known, should have done more…flashbacks when she was scared, I couldn’t be stronger and hold back my tears… I think my sister, mom, Drew, and I left pieces of ourselves inside those moments with Kate, and now we are just beginning to rest and heal.
 
By some odd coincidence, the dean of Katie’s grad program in D.C. as well as several others from SIT had called a World Learning Summit in Minneapolis yesterday.  My mom, Kristine and I were invited and it was such a gift to be reminded of the life Katie had, the person she was BC (before cancer).  Preeti, her dean was so enamored with Kate.  She told us stories of how Katie would get so irritated with her unprepared classmates; interrupting their obtuse inquiries with “obviously you haven’t done the reading, don’t waste Preeti’s time with your questions…”  It just made me think of her last Monday night when we thought her pain was out of control because we had missed her oral dialaudid all day, she told Dr. Desai,  “I do not appreciate the care I am receiving, you need to fix this now”.  Needless to say, he personally attended to her as they changed her meds and she was comfortable again.  
 
We had the opportunity to hear the story of a woman from Kenya, pursuing the same graduate degree Katie was, she talked with such energy and conviction (reminded us again of Katie) about her struggle to fight corruption and advocate for women’s rights in her country.  I just had to ask her, “despite immense discouragement, what keeps you, just one person, fighting?”  She just simply shrugged her shoulders, and with a smile said “it just makes you want to fight harder, do more.”   I have seen that people like Naomi from Kenya, Katie in her fight with cancer, her Ninja doctors and mentors (you) and your tireless pursuit to cure, are truly special; when most would give up through such discouraging incidences, there are those few amazing people who “fight harder, do more” and “work harder to find better solutions…”  I now understand why she felt such a connection to you, her ninja-like “big brother”, Dr. Oliver … – it came with your incredible shared perseverance.  Keep doing what you do, what you did for Katie. 
 
It’s been hard to reflect, especially over the past two months, on just how sick she was getting.  We just slowly became numb to the gravity of her disease, her deterioration, and the pain she must have been in.  She, without complaint, went through so much.  Getting to know the part of Katie she was forced to leave in D.C., and reading/receiving all the messages from our Mayo family has really helped to heal the pain cancer had ravaged our Katie, and family with.  Kate left us the gift of her words, read her blog if you ever let yourself have a little free time… I think you’ll find a few laughs in there :)  Thank you again for everything, and please share with our people down there.  
 
With all our gratitude and respect, 
Jenna Bofferding

A note from our “Ninja,” Dr. Kizilbash

There is something that my colleagues and I often say to one another… It always seems that the most resistant cancers happen to the nicest people. It would be hard for me to find a better example of that statement than Katie.

I remember the day that we first met at St. Mary’s hospital – admitted with a mass in her chest, awaiting a biopsy, surrounded by her concerned family members. However, despite the uncertainty of what lay ahead, she remained cool headed and strong – betraying the resilience that she demonstrated in battling her cancer over the year or so that followed.

I must admit that I would look forward to meeting Katie at her appointments as they would always brighten up my day. Furthermore, I can say with certainty, that many of the other staff at Mayo shared similar sentiments. Many other trainees and staff would often ask me how Katie was doing, how far she is along with her treatment, when I would next be seeing her, etc. Why wouldn’t they want to be a part of her life? She was pleasant to interact with, intelligent, always full of questions and planning as far into the future as she possibly could. Frequently, we would end up discussing every possible permutation (and perhaps a few more) of what could happen and how that issue would be addressed. I actively had to hold her back and remind her that cancer is too unpredictable to be thought of as a road to which one needs to get to the end of as soon as possible. Rather, as described by one of our past fellows who himself passed away from cancer, it needs to be considered a journey that one needs to travel through.

I also remember how excited she was when she changed her photograph in the electronic medical record from a not-so-happy Katie with hair to a glowing, hairless Katie with a fantastic smile. Shortly after my clinic visit, she was admitted for a session of inpatient chemotherapy. The resident who was gathering information from the chart on her history took one look at the picture and said, “Just goes to show. You don’t need hair on your head to look beautiful.” Don’t worry Drew… it was a female resident (wink!)

Finally, when it comes to cancer, having a good support system is crucial. If I recall correctly, I believe Katie only came alone to one single appointment. Otherwise, her doting family members would always be there to help her pull through all the acronyms that I kept inundating her with. So, thank you all for being there for her when she needed it most.

In my culture, when someone passes away, we say, “Surely we belong to God, and to Him we shall return.” Katie has indeed moved on, however her presence will be missed and I won’t forget her.

Thank you for listening.

Sani

Katie's Hematology Doctor "10.  Humility in people is inspiring. *My hematologist stopped by. He is genuine, he is genius.” -Friday July 27th 2012

Katie’s Hematology Doctor
“10. Humility in people is inspiring.
*My hematologist stopped by. He is genuine, he is genius.”
-Friday July 27th 2012

Final Entry

” GO CONFIDENTLY IN THE DIRECTION OF YOUR DREAMS!
LIVE THE LIFE YOU’VE ALWAYS IMAGINED. “
-Henry David Thoreau

Lymphoma caused unexpected complications leading to a sudden deterioration of Katie’s health. She died late Tuesday night.

We were blessed to have Katie for 26 years, but she has left her temple to embark on the next journey. We find peace in knowing her father will be waiting.

Join us as we celebrate her life this Sunday, April 7th at
SEVEN Event Center in downtown Minneapolis from 1PM – 4PM.

700 Hennepin Avenue S
Minneapolis, MN 55403

Per Katie’s wishes, there will be an opportunity for all to
speak and share any stories or memories.

All donations & flowers may be directed to:
18797 97th Place N
Maple Grove, MN 55311

http://www.caringbridge.org/visit/katiebofferding

Got My Hair Did

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Per the recommendation from my sister and her distain for my uneven sideburns, I received my first haircut since regrowth! How fun. But I must admit I was a little sad. I didn’t want to cut one little strand off.

I don’t really know why hair is a mini obsession of mine. I have really learned how much we are defined by our looks. Another aspect is loving something you never thought you could do/pull off. Being bald was liberating. The buzz look was healthy and a little GI Jane. The new pixy is whimsical.

PS: Yes, I was taking photos in the bathroom waiting for my mom and sister. Keeping it classy!

 

Can’t Trust Lymphoma

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Recap: 6 R-CHOP, 2 3-Day R-ICE, Auto Stem Cell Transplant, 5 weeks of IMRT Radiation killed my massive tumor in my chest. Some Lymphoma cells lived and started to grow in November. New tumors biopsied on 1/15 and we found it was Lymphoma a week later. The new cancer cells are growing in an odd pattern around my sternum. I am now getting radiation and on the waiting list for recurring Large Diffused B Cell Lymphoma clinical trials.  

To fill our afternoons we find things to do in Rochester. Even if it means freezing our butts off.

To fill our afternoons we find things to do in Rochester. Even if it means freezing our butts off.

Ninja'ing some snacks and coffee while I get my treatment.

Ninja’ing some snacks and coffee while I get my treatment.

Mid-way through SBRT Radiation and I am feeling much better! The arch formed across my chest has deflated, the redness reduced, and the burning, shooting pain has disappeared. YEAH! Being in severe pain is exhausting. I spent many-a-hours all looped up on oral Dilaudid. And I hate pain meds. They are addicting whether you like it or not. Now I have the sweats and headaches, but not nearly as bad as the IV drugs. I lasted a long time not taking any, but for a week I couldn’t take it anymore. Pain.

So, needless to say, the radiation is killing off those Lymphoma cells. But I shall remind myself, and you, that radiation will not be enough. As my Dr. likes to demonstrate- interlace your fingers and wiggle them- that is what my disease looks like. It is so interlocked with fibrosis tissues that it will be nearly impossible to reach all the cancer cells. Therefore, the clinical trial is absolutely necessary to ‘hit a home run’. As I have to remind my doctors I am not looking for that ‘home run’. I am content knowing that I will never be cured of this thing called LDBC Lymphoma. This doesn’t make me less optimistic, nor do I have less of the fight left in me. I am just so happy that I can wake up each day and be mobile and of sound mind.

Jenna, Patty and I met with my team on Monday 2/11 – so happy to be back on my favorite Dr’s service- (he is a Fellow interviewing for a position at Mayo for the Neuro-Oncologist department. He likes the great challenge of brain cancers because it is so undiscovered and deadly. The humbled nature of this young Middle Eastern man with flakes of dandruff on his shoulders will bring great advances to the world of cancer. And I love his Ninja abilities. He shows up everywhere and fast.) – to discuss and revisit my clinical trial after 2 weeks of first hearing about it. These are the notes from the meeting:

~’Phase One Trial- really good pre-clinical data’

~’Very hard to stamp into remission, but this drug has very good indicators of stamping ppl into remission.’

~’Other drugs extend (life), this drug has very good chance of ‘homerun’.’

~’Investigational treatment- DRUG clinical trial- investigation of that drug’

~’No clinical trials in Phase Three for your case of Lymphoma’

~’Ask study coordinator about reproductive protection- if considered sterile do I need to be on 2 forms of birth control for trial?’

~”PICC Line for trial?’

~’If cancer is growing is it (drug) not working’

~’PET Scans during clinical trials.’

~’There is relative little disease compared to what we were dealing with last year.’

~’10 clinical trials for my case of Lymphoma.’

~’Considering another clinical trial- but no space for a while. In the same line as the other drug.’

~’You are making a mark on radiation’

~’This is going to be how we do this kind of thing in the future.’

~’Ahh condoms’ (Referring to me not even chancing it by having sex)

~’My cancer acted different; therefore, couldn’t be the same.’ (Me explaining how I felt new cancer growing)

~’Katie, we can’t trust Lymphoma.’

~’Do we waste your health, time and energy (on other treatments)?’

~’I’m (Dr.) kinda in the mood of waiting.’

~’We (Dr.s) are looking at everything in the world for you. If something in Swaziland makes sense for you, we’re sending you there.’

~’Starting (or rather making a decision) week of 3/2.’

~’I (Katie) love the Mayo app on the Ipad. I look at all my labs and clinical notes.’

~’Is that an Ipad (Dr looking directly my non-Apple phone).’ -I love that these are the people ‘curing cancer’, but don’t have the time to know what an Ipad is. There are more important things I suppose.

~’Infinitely worse actors than Lymphoma (ovarian and melanoma) this drug will be approved for.’

~’The longevity of trial is very very good.’

~’Katie your body is fighting, but there is a threshold barrier.’

~’The steroids you are on will counter the drugs. Start to taper after radiation.’

~’Speaking in terms of theory alone to come see me in 25 years I am not going to keep using 50s chemo.’

~’Oh Katie, the pain is in your chest, not in your head.’

~’With what we biopsied, no surprise that conventional treatments didn’t work.’

~’Basically like going into glue-they wouldn’t be able to close your chest.’ (Revisiting the surgical removal option)

Thinking about the difference between Western and Eastern medicine. I was at the Cancer Center library looking at books related to Alternative Medicine. I really resonate with this passage,

Western medicine views many illnesses as random occurrences. The victims of “incurable diseases” are powerless pawns of fate. They are just “unlucky”. There is alternative view though. If we take the concept that illness is a message from our bodies to our minds, as question waiting to be answered  then it means that you can potentially find a solution to any illness. The Encyclopedia of Energy Healing by Andy Baggott

I cannot tell you how many times people, those close and those not so close, have looked at me like this- Unlucky. I have felt this from day one. As I became more and more okay with my new life the feeling has all but gone away. I truly embrace that there is a different way of looking at illness and taking the divine destiny element out. Many people just can’t wrap their heads around this. Challenge the mind. It will take you places beyond belief.

Integrative Approach

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Time heals all wounds. Okay- it allows for digestion. The last 3 weeks were like sitting down to Thanksgiving dinner and eating until it is so uncomfortable you have to undo your pants. Aside from forced vomiting, nothing but time can make you feel better. That is how I have dealt with the fact that I like to defeat odds and need further specialized treatment. Time.

At Mayo last week we came up with a comprehensive, integrative, and hopeful plan to target the new disease. As my Radiation Oncologist stated, “It is a big treatment Failure. We have not seen anything like it.”

Modern Medicine

Plan of action:

1. SBRT- Stereotactic Body Radiation Therapy for 10 sessions starting soon. It delivers precise, high doses of radiation to the tumor. It is equivalent of 25 sessions of IMRT (my previous radiation) in the 10 sessions of SBRT. The side effects are going to be mostly to the sternum (no more contact sports… darn) and to my skin (blistering, lesions, sunburn, spider veins, etc.).

-Our goal is to shrink the tumors to relieve my pain and keep the lymphoma settled.

2. After radiation join a clinical trail testing the effectiveness of a drug that activates the immune system to fight off the cancer. Clinical trails are never a guarantee and the process to get in is very long and tedious.

Many have questioned if removal of disease via surgery is possible? Yes, I too had a dream that they sliced me open started to scrap it out. Well turns out that my Hematologist thought about it, but since there is so much fibrosis and scar tissue intermingling with the lymphoma cells it is impossible. I really need some of those vital organs in my chest.

Holistic Medicine

The day after I returned from Mayo I went to meet with a Ayurvedic expert to gather knowledge of a more holistic approach to care. I have been very pensive lately thinking of all the possible ways I can approach a holistic health plan. I considered all the “I cure cancer diets” (the Gerson diet, macrobiotic diet, and keytogenic diet), and I just don’t think harsh changes of eliminating certain foods is the right thing to do. I am intrigued by each one and see how they could work for some. Right now I am more focused on connecting mind, spirit, and body. That is where Ayurveda comes in.

This ancient Indian health system combines all elements and can work cohesively with modern medicine. There is no all or nothing. And for now there are still lots of options for me and modern medicine. Now if it comes to a point where all efforts have been exhausted then you will find me in some remote place getting 5 coffee enemas a day.

1. To start via the recommendation from my Hematologist and Ayurvedic NP get a reverse osmosis water system installed in home.

2. Eat all organic (since I don’t buy/consume alcohol this makes buying organic a little more feasible, but it does put a damped in the pocket-book… the price is well worth it!)

3. Limit cold/raw foods to sooth the digestive system.

4. If I can digest milk, buy non homogenized milk. Have only at night with spices and warm.

5. Maintain a morning routine of drinking a glass of hot water, scrapping the tongue (apparently your tongue can tell you a lot about your health), messaging the body with coconut oil (letting it sit for 15 min), do yoga, meditate, shower, then eat and have tea.

6. Take an herbal blood cleansing and digestive cleansing regiment.

7. Overall, my vata is out of balance and do all things to get this dosha back into alignment

It is an adventure to see how the modern and holistic ways can combine into one integrative approach. There has been a lot of advancement at major medical institutions, but honestly it is all done internally. Start from within and understand your body is interconnected to everything you put into it. Garbage in = Garbage out (yeah I learned that in Economics). The body is a temple.

Results: Clarity of the Mind

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Results. The mass is gone. The big tumor in my chest cavity has been beaten. On the other hand, the biopsy results came back today for the peculiar chest reactions after radiation. The biopsy is cancerous. Round two fighting Large Diffused B Cell Lymphoma biathches!

It is as if my old tumor burped and now the cancer is growing like a halo around my sternum. There is no bone involvement which is good! I will head to Mayo later this week to figure out next steps and clinical trails.

I meditated and cleared my mind of all things cancer over the weekend. I did not harbor any anxiety waiting for the results today. When I heard the news over the phone I just let myself react with tears. Just like last year, Patty (mom) had left my loft just 10 minutes before the call. She called me to tell me about directions and at that moment I couldn’t get the words out. Silence. She soon was at my door step. Hugs and ‘wolf pack’ time was the most comforting in the moment. Sarah, Jenna, Kristine, mom and I just relished in the moment and went through the emotions. Nothing is new. There is no pain I can’t take. I am not living in the future. I am living in the now. Drew and I are just so happy being us in our new loft and looking forward to the small pleasures.

Life is a Journey

With the holidays over and the madness of family gatherings behind me, I finally had a chance to think clearly for a hot second.

Drew and I were set to buy a house, and the process was very trying and annoying. In the end we did not buy the townhouse in the urban part of the suburban city we live in. It was a huge relief in the end. We lost our faith in many the system when it comes to buying a house, but still dream of having our own space to just be.

Coinciding to the holidays and house drama my health was starting to change. I spent some time at Mayo for a chest rash and pains. This was not normal and we decided to take a 3 pronged approach. Right now 2 of the 3 are not relieving my symptoms. My next PET scan was moved up to next week to get more imaging and detailed info what the disease is up to in my chest.

Something is happening that is not normal. Just getting use to my normal: getting stuff done!

All these events led Drew and I to finally take a weekend away in what I like to call the mini-moon.  We ventured up to my old college town of Duluth, MN. This city is majestic. A perfect blend of beautiful scenery, old town charm, wealth, poor, and everything in-between. Typical to my nature, I wanted to meet up with old friends and contacts, visit all the places I hadn’t been to, and eat delicious foods.

After one night I felt the weight of the world lift off my shoulders. Moments of clarity. Moments of reflection. Moments of stillness.

Sunrise over Lake Superior 1/7/12

One person really influenced this process for me. A college professor that I TA’ed and studied with while I was a student at UMD. We met at one of my favorite spaces, Sara’s Table, for the first time in years. She came ready for me with guiding questions, readings, documentaries, and, most helpful, wisdom. Per our conversation I have uncovered a few needs that I haven’t taped into in a while and where to focus my energies.

My post mini-moon approach to killing time and trying to navigate this cancerous life is as follows:

1. Find a living space where I can return to city living: walking to the Co-op, hunkering down in a library for hours on end, eating at locally owned restaurants, and being built up by the natural energy of city life. *On our way home we stopped at a converted warehouse to fill out the rental app. Still waiting to see if I am legit to rent a space… again no faith in the institutions.

Our 'maybe' new home near the U of MN

2. Figure out how to take ownership and action regarding to finances. An intense and painful process for one that so badly wants to work for internal worthiness and economic gain, but sadly cannot work due to the cancer mass thing.

3. Delve into an internal spiritual journey. I have dabbled in and have studied extensively various religions for many years. Over the last 12 months I have really reflected on what doesn’t work for me and where I do not fit into. Now it is time to find out what does work and where I find clarity.

A book that was recommended to me by a fellow Peace Corps Volunteer has lifted me to a better understanding of my thoughts. Whenever I read a book I always take bits and pieces and then contribute those parts to my greater understanding. Just as if I were writing a research paper.

The Suicidal Optimist: Critical Philosophy by J. Brian made me smile and nod.

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