Afterword from Kathy’s son, Phillip

Here it is—the post we all kind of expected to happen at some point.

I’m very sad to announce that Kathy is officially gone. I’m Kathy’s oldest son, Phillip, writing to you now in her absence. My apologies if this is your first time hearing this news; we did our best to loop everyone in. A beautiful wake and funeral were held—all planned by Kathy, herself, during her final months—all according to her detailed specifications. Indeed, she planned and prepared all the important details surrounding these events to make our lives as easy as possible. (She also did just really love planning things)

There is one very important thing she didn’t plan for, but I’ll save that topic for another blog post, since it should be valuable to anyone managing the most difficult part of cancer: the bitter end.

Memorabilia

For now, I’d like to provide everyone with three keepsakes, as requested by a number of funeral attendees:

1. Eulogy written by Kathy’s son, Phillip Knoll (me), for her funeral:

Phillip’s Eulogy for KathyDownload

2. “The Life of Kathy: Blog Edition” slideshow with photos & videos from all stages of her life:

“The Life of Kathy” Blog Edition: Living My Life in 24,815 Days

3. “Living My Life in 10 Days” book for anyone wanting to read this blog like a book or print it out:

Living My Life in 10 Days book [98 MB – digital]Download

Living My Life in 10 Days book [951 MB – print]Download

Continuing Kathy’s Legacy

There has been some talk about appropriate charities to honor Kathy’s wishes. Her family has agreed on “I Grow Chicago” as the official “Kathy Braier Recognition Charity” (I just made that name up now).

Why “I Grow Chicago”? They operate the way Kathy did, doing volunteer-driven social services from within the community. They’re a grassroots, low-overhead non-profit serving underprivileged families and community members in West Englewood, Chicago, IL. I was able to meet and work with them directly during my time at Digital Third Coast, so I can vouch for their passion and sincerity.

Here’s their donation page: https://www.igrowchicago.org/donate/

Thank You

That’s all for now. We’re going to keep this blog running for the foreseeable future to honor Kathy’s desire to help other cancer survivors.

I am so grateful for everyone’s support. And I mean this—you guys are truly remarkable. I lived with Kathy for long enough to bear witness to the love and compassion you have all provided over the years. Please be very proud of yourself for this. And know that Kathy wanted you in her life, not out of circumstance, but out of a deliberate appreciation for you.

❤️

Kathy’s favorite vacation spot, Door County, two days after Bill & Kathy’s marriage

How does someone grieve?

Cancer survivors can help their loved ones cope with grief.

It is the anniversary of Pastor Tim’s death and the interim pastor, Pastor Don, led a sermon about grief. Pastor Tim was my next-door neighbor and previous owner of my dog, Riley. How does someone teach about grief? As I am trying to cope with my grief about the loss of my own life, I also feel I must help my husband, adult children, friends and family members survive the loss of me.

I believe the best way for people to cope with grief is to just go through it. We tend to learn as we go. Every loss is unique and impacts us differently because there is no “correct way” to deal with grief.

As if God was testing me, a few days ago my wonderful dog, Riley, quite unexpectedly and without explanation, developed liver failure and sepsis and we had to decide if it was time to let her go.

The most painful part of this process was that my husband and I approached the decision from two very opposite points of view and I was afraid of how this would impact our relationship as we approached my death. I decided to share this concern with the vet in charge of Riley’s care and that was a wise decision. The vet was able to skillfully help us navigate our points of view and move to approach the decision from the same side. Giving us permission to have two beliefs and to support both, as well as tweaking the COVID rule, she allowed us to see and hold Riley. When we held her, it was clear to the three of us that she was already gone. We needed to make the decision that respected Riley and choose what was best for her. My looming death did make this much harder, but also very clear. It wasn’t just about losing a much-loved dog, it reflected my loss.

In a family, each person has different needs at different times. Sometimes we need to cry. Sometimes we can’t talk about it. Sometimes we have to obsess about it. If you need to do it, feel it—it’s okay. (Okay, buying a drum set for my boys after my Mom died, was probably a pretty dumb idea.)

I look so healthy most of the time, I feel the need to remind my husband and children that I may go as quickly as Riley. Losing Riley allowed us to talk about what it will feel like when I go. We had already been talking about the plans for my funeral, yet, my husband began to panic about how to organize my funeral so we created a funeral folder with ideas and suggestions. There isn’t always much time to prepare for a funeral, but I have found it calming to both of us to help make some plans. 

Please wear brightly colored clothes to my funeral. My husband and kids aren’t black-suited-type-people, so casual, brightly colored clothes will help them think of flowers and me in my garden—more our style. I want to be cremated, and my husband wants my urn buried with him. However, if someone wants to gather a small container of ashes to sprinkle in Door County, you can have at it. It’s your funeral too.

Do what you need to do to say goodbye, and if you need to talk to me, you already know what I will say, so you will hear me if you get quiet and listen. My voice will be there for you. I will be there. 

Cry when you want. Yell when you need to. Talk about me. Don’t talk about me. Forget about me for a day; that will happen. That’s okay. I felt like I was losing my Mom again when I didn’t think about her for a day. Follow how children grieve. They let go a little bit more each day and move back to living their lives and playing. That’s fine. You are alive. Be alive. 

I will be happy to be gone. It’s painful and exhausting to be alive. I will be relieved when I go. Yes, it’s true, I won’t be in pain anymore. 

The glory in grieving is that there’s no right or wrong way. There’s just your way. However, perhaps.…don’t buy a drum set.

I’m just too busy to die right now!

Hobbies help cancer survivors focus on the here and now.

I’ve always enjoyed hobbies. I’ve never been very artsy so my new attraction to painting birdhouses is quite the diversion for me. 

When I initially thought about retiring, I wondered how I would spend my time. At first, I began teaching several classes at the local community college and sought out more classes to fill my time. I love traveling, so I created travel agendas for several trips we had in mind as we began traveling.

Suddenly my world was jolted as I was diagnosed with stage 4 pancreatic cancer. I spent a lot of time trying hard to stay off the internet and preparing all my finances as I assumed I was going to die pretty quickly – according to all the internet articles I tried so hard not to read. My time became consumed with doctor appointments, medical tests, and helping prepare friends and family. 

Now, 3½ years later when I still haven’t died, I needed an outlet to spend my time that helps me stay off Google searches and occupies my mind. All articles about cancer survival suggest that I should stay focused in the here and now.

How do you stay focused in the here and now?    ………  Hobbies!

I love gardening, so my garden looks wonderful. Getting lost in the plants has been an excellent cognitive escape. My friends have kindly dropped off numerous coloring books, puzzles and paint-by-numbers activities. I’m not much of a coloring or sticker book enthusiast. Puzzles work well for me. My husband has joined in with that and the winter produced many puzzles. Thank God my son’s girlfriend loves to finish them for me! I tire of them sometimes halfway through. But they still grab my mind and transport me into the land of relaxed nothingness. 

Books for book club, movies, shows, and coffee with friends;  the old faithfuls of hobbies!

Hiking and looking for wild flowers and birds is emerging as another escape for me. Searching for bird sounds on YouTube and matching them with real birds is actually fun. My dog loves that I take her with me on my hikes and my friends and family enjoy joining me so we can be together. My husband and I have begun to devote an afternoon each week for an escape hike. My brother, who is preparing for longer runs and bike rides, has learned not to wear his flip-flops on my hikes. I don’t go far, but it can be an adventure.

I realized a bucket list event when I trained as a Storm Spotter with the National Weather service here in Wisconsin! It’s so exciting for me when the black clouds roll in. My son and I always dreamed about being spotters together. I made a checklist to carry in my wallet so I get the words right when I call in. Bursting with excitement, I even got to call in with pea-sized hail. That was quite the event!! I walked around the house informing all who would listen that I got to call in a storm event. Quite amazing.

My latest hobby is buying pre-made birdhouses and painting them. My husband puts them on sticks and I’m filling up my garden with brightly painted birdhouses. This past week I woke up early feeling rather miserable. My greatest fear was that I had 2 birdhouses that weren’t going to be finished before I might have to go into the hospital. My God – what was I going to do?? No one had my vision for the birdhouses so they might remain undone. I knew I was rather hooked into birdhouses.

People frequently ask me what I think has kept me alive all this time when medical experts predict I should be dying. Truthfully I have no idea. I’d like it to be something I’ve done, something I could control. Maybe all those prayers that keep pouring in, all my activities related to synergy, my positive attitude, the fabulous caring social supports. Maybe it’s living in the here and now that has developed with all my hobbies.

Personally, right now I think I’m just too busy to die.

Where have all the flowers gone?

Flowers mark life for this cancer survivor.

I’m still here as the spring flowers are starting to pop up in my garden.  With a smile on his face, my son dragged me outside to see the crocuses peeking up throughout the garden when the snow began to melt away.  They are here!!!  Spring is here!!!  And….I’m still here!!!

I know I’ve been living this way for many months, but it’s still very strange. I never know if I will be here next month, next week or tomorrow. When I was hospitalized last month, my oncologist stopped in to see me right before I left and I asked him if he was surprised that I was still here – in this world. He hesitated a little before he answered. He was honest – he said yes. 

I began on Hospice care when I left the hospital. I really believed I wasn’t even going to ever leave the hospital. I was pretty sure this was it. Even though Hospice cares for people for many months before they die and has tried to extend their image that they go beyond just end-of-life-care. No one seems to believe that. I tried to become the cooperative Hospice patient and ordered a bracelet announcing my DNR (Do Not Resuscitate) intention. I couldn’t think of any hospital equipment that I needed at home to help my stay during my last few weeks.  So, I ordered a shower chair. Then I invited my sister over to take showers in my house so she could use the chair. She thought that was very funny, but wasn’t interested. Neither was I.

And so, I didn’t die.

So, I canceled the bracelet and sent back the chair. Slowly I began to feel better and began walking 1-2 miles a day again. I guess it’s not my time yet. I am afraid we might be getting a bit relaxed and forgetting that I still could go any moment. I don’t want us to be shocked by reality. 

Man Makes Plans, the Universe Laughs. 

Family members and friends are becoming fully vaccinated and want to visit so we are setting up plans. As I make menus and plan activities for all my visitors, I am becoming afraid that I might be tempting fate or the universe. What’s that old expression? Will the universe laugh at my plans? So, I started helping my husband plan my funeral. I hoped that funeral plans balance party plans to keep the universe happy. The funeral sounds like a fun event. Somehow I’d like to be there!

As a forever planner, it’s a bit strange to not make plans for all my visiting guests. But, I am not making too many party plans. I’m keeping it simple. It feels important to me that I remind myself that anything can change in a flash. I feel much better in the safety and comfort of my own home. I need my stuff around me. I need my routines. I compare myself to my grand-daughter. We like to be close to the people and things that help us feel safe. Fun is good, but in small doses, a little at a time. In the meantime, I’m back to living again. In just small doses!

Caretakers

The invisible heroes for cancer survivors

Shame on me that it took over a year to dedicate a whole post just for my caretakers. In my defense, I have thanked my caregivers throughout this entire blog, in many different posts. But, it’s time I scream it from the mountaintop: To be a caregiver is a very, very tough, demanding and impossible job. 

As much as I feel alone, no cancer survivor walks this journey completely alone. There are many people who share the journey. My husband lives this cancer experience with me each and every day, on-call every night. My sister is always just a phone call away, consulting on most of my decisions, joining in the virtual appointments virtually (we have double virtual medical calls) and is ready to drop her world and drive up to help me through mine at a moment’s notice. My other very close family members, children and friends back up both my caregivers and me. Those texts and moments of shared anguish mean a lot!

For me, as the cancer patient, my list of needs can be long and contradictory. I try to do as much as I can on my own because the more I can do on my own, the stronger I feel. However, I definitely need you to be the dog walker when the high temperature is -5. I need you to check on me – – have I been drinking my water throughout the day? But I need you to leave me alone so I can have my space. You must understand my treatment plans and medications, but don’t take over my conversations with the doctors and nurses so I can still be in charge of my life. I need to be able to cry and sometimes I want you to be strong and other times, please cry with me. Definitely don’t feel sorry for me that I can’t do things anymore or even eat some of my favorite foods, but it’s okay to share a sadness about that because you have given up many of your own favorite activities and changed your life. 

For you, as the caregiver you are also walking down a path that will eventually lead to loss and I know you are trying to deal with that on your own. There isn’t a playbook that helps you know what to do in most situations. You are as tired of all this as I am. But you show up every day, ready to help me trudge through it.

I guess the most important thing my caregivers can do for both of us is to take care of yourselves. Treat yourself. Sometimes give yourself a night off. Buy yourself a Starbucks when you feel you need it. Most importantly, surround yourself with your own network of support. Caregivers, who have caregivers, are probably the strongest people in the world.

I’m Not a Hero

I’m just someone surviving pancreatic cancer.

I don’t mind being your role model for living with pancreatic cancer or any cancer. My Mom died from lung cancer. And yes, she was a smoker, like so many people in the 50’s and 60’s –  smoking and evening cocktails was a cultural way of life. To me as a child, it was a cool adult way to live and I joined in the art of drinking and having a smoke as soon as I could start sneaking them. But, those activities didn’t work out so well for me and I quit while my body agreed I could quit. 

I still salute my Mom as she struggled with cancer and I think about her often these days. I remember one time that I froze in my chair when she asked the doctor how long she had to live. I was stunned she was brave enough to ask that question. And she didn’t even cry. She had moved into my home so I could take care of her and we developed a very close, quiet, comfortable relationship. My Mom was a brilliant woman who was driven in life; she had an intensity of living that propelled her to be an important glass-ceiling breaker for women in the accounting world. The women who came behind her were very lucky she had traveled that road first. I am so happy that I had such a wonderful role model who lives on in my heart as she helps me today through my own journey.

Thus, I would be honored to be a role model for anyone who travels down the cancer road after me. I don’t want to be a hero just because I am on this road. I am no different than anyone else who has had to face challenges. Every one of you would rise to the occasion, look cancer in the face and do your best to survive. And you would become the role model for the people who come after you!

You are also the all-important support system for those of us already on the journey. Without you, we could not travel along this road. No one can do this alone. So, thank you for joining and supporting me.

The best thing everyone recently did, that was wonderful, was to enjoy my imaginary I’m Still Standing Party! I received texts all afternoon with pictures of people clinking glasses in cheers, sending hugs and blessings in celebration of my party. People enjoyed all the imaginary food and bragged about the great homemade guacamole! I am glad everyone enjoyed the Elton John song playing in the imaginary background! Someone even sent a picture of the snow angel they made in my honor! Some said it was the best imaginary party they ever attended! I certainly could never have had an imaginary 3rd-year anniversary party if you all couldn’t abandon your reality for a moment and join in the fun.

I’m Still Standing Again

Surviving Pancreatic Cancer for 3 years!

Each year I have an “I’m Still Standing” Party to mark my anniversary. This is my third year! Unbelievable to me. As with everything this year, COVID has altered the plan. There cannot be an in-person party. 

Instead, I want an Imaginary I’m Still Standing Anniversary Party.

• Not a virtual party! 
• Not a drive-by party! 
• A real imagined party.

With my imagined party I can invite everyone I know and there will still be room in my house. I can invite all the family members and friends who live too far away to join in an actual party and we can all imagine them being there. My party has always been a thank you to all the people who have gone out of their way to support me in my quest to live, and now I can thank even more people. There are those in my far-away “fan club” who send cards, text, and call to check in to make sure I’m okay. There are those people who have done quiet, secret acts of kindness, like my neighbor who decorated her backyard for me to enjoy from my kitchen window. I’ve even made new friends this past year. Pastor Tim’s Mom, (we inherited my dog Riley from Tim after his sudden death) Ida, is almost 90 and lives in Florida. She has called every month to check in; it would be wonderful for her to join in the party.

With my imagined party, I can place an imaginary order of all the best food in town and everyone can imagine eating all their favorite foods. No one has to bring anything. Everyone can drink champagne and not worry about drinking in the afternoon. (I actually never felt bad about an afternoon glass of wine, but I believe I read somewhere that people worry about that!). Since I’ve had my new stent placed in my duodenum (now there’s a new body part to learn!), I have been on a strict diet of eating– no nuts, no fresh veggies or fruits, no meats unless they are “fork-tender”, low fat, nothing fried, no Christmas treats. In other words, if it’s good– I can’t eat it! My dog has an extremely allergic response to food and her specialized diet of prescription dog food, rice, and baby-food chicken that I created is starting to look pretty good to me. At my party, I will eat everything!

With my imagined party, no one is at risk to catch COVID. No masks needed. No social distancing. Everyone I know is rather exhausted from the COVID stress. There will be no judging of the decisions other people make– everyone will just be safe. At my party, the exhaustion will disappear and everyone will feel well. I never know from one moment to the next how I will feel. In the past I was the Planning Queen and now plans actually make me nervous because I can feel well one minute and miserable the next. With all the musicians who have struggled with a fentanyl addiction, I am quite surprised I don’t break into song and dance on occasion. At my imagined party we will all be dancing and singing!

You are all invited to my Imaginary I’m Still Standing 3rd Anniversary Party.

• Date: January 1, 2021
• Time: Whenever you can join us
• RSVP – Not necessary, because I can just imagine that you are here!

I thought pancreatic cancer was about to win!

Recently I’ve watched several people I never met die from pancreatic cancer, stage 4.

I felt close to them because we all shared the same disease. One person was Alex Trebeck, whom I believe many people shared the same sense that they lost a good friend. Another was RGB, an American icon. The final, a regular person, like me.  The most amazing connection was how quickly each of them turned from seeming to feel okay to miserable to gone.  Pancreatic cancer is a swift killer.

About the same time I’d been working hard to embrace the “life of slow”, a terrible case of “feeling very miserable” set in. I was provided an extended stay in the hospital to gain yet another stent in my apparent quest to become bionic, and received antibiotics to deal with a serious bacteria infection.

I came home, but I wasn’t getting well; Every day I felt a little worse and couldn’t get a handle on it.

So, I began to wonder if this was the beginning of the end.  The good part is that… I was ready.  It would have been okay.  I think that if you have a disease that you know is going to end your life at some point, you can come to terms with that. If you don’t have that disease, I suspect it’s hard to imagine how that is possible.

Of course I’d like to survive this pandemic and be able to dance in the streets!  I’d love to see my granddaughter grow and thrive in the world. My three boys are living good lives and I’d like to see all the places they will go. I’d like a few more walks in the woods with my husband. But we don’t have control of what we will and will not be able to do, so I’m okay. Too many people have had their lives ripped away from them suddenly from Covid, so I’m really okay.

I still have lots of hope for myself and everyone I love, I have faith in what will be and I feel surrounded by love.  After cleaning out closets, pre-confirming funeral plans and organizing finances, those three (faith, hope and love) are all that matter now. 

Fortunately, my doctor had a few more tricks up his sleeve, so I’m back to wandering slowly around the neighborhood with my dog and calling it a walk. I’m feeling slightly less miserable.

Feeling the need for my small immediate family to be together on the Thanksgiving holiday this one last time, we are going to gather, probably eating outside and chatting from afar wrapped in lots and lots of layers.  We will be super careful because we all hope to gather again for Christmas and want to make sure everyone will still be here.  

Indolent!

The good news is my doctor continues to be impressed with my indolent tumor. It’s impacting, but at its snail pace. 

The new vocabulary word for today: indolent – growing or progressing slowly; avoiding activity.

As usual, I’m living each day focusing just on the day. However, the strange thing about having cancer is that each day is different. Up and down. Some days I wake up and feel great and have the energy to catch up on my world, enjoy a visit or take a walk. Somewhere about early afternoon I hit a brick wall and the day is done. I find it hard to accomplish even the simplest of things. Other days I never quite find that old surge of energy. Those are my indolent days.

Right now energy loss and stomach pain are my biggest obstacles. Even a sweet phone call with a friend can leave me feeling like I need another nap. I used to be the “Energizer Bunny”, annoying most people by running circles around them with activities. Now, sitting on the couch watching TV can take too much energy. Such a drag!

The stomach pains began in July. As mentioned in the previous blog, the doctor found a blocked stent and replaced it. Cured? No! I had a miserable time recovering and the stomach pains actually increased.  In October, they decided a pain block would solve the problem. Back to the hospital for another procedure, and as usual with my history, I had a reaction that only occurs sometimes. It’s November and I’m still recovering. And the stomach pains continue with the increased exhaustion.  

I don’t believe more procedures are the answer. Pain meds seem to work the best, as well as just weathering through.

I guess my journey has reached the point where I’m slowing down. I am now indolent!

We had discussed clinical trials with my doctor in May and there just weren’t any available that matched my needs. As planned, we stayed tuned into clinical trials, but the options have not significantly increased. Given my body’s propensity to respond very poorly to medical interventions, clinical trials (the holy grail of cancer) have lost their appeal. I just can’t imagine subjecting myself to significant pain and discomfort with less than a 10% chance of anything working. I already have enough troubles. My doctor agrees. That’s comforting. He believes I would experience a negative net gain. In other words, I’d have a more negative response than benefit.

So, the “energizer bunny” is focusing on slowing down to conserve energy and enjoy the gift of my well moments: walks in the woods and relaxing. Sorry folks, this is hard. While I respect all your more modest, quiet lifestyles, it’s a bit boring!! I have loved juggling numerous activities and plans! But, I’m moving over to the quiet lane of living and trying to focus on the peace. One activity per day, a nap, only one returned phone call, a nap. I can do this!

Riley, my sweet dog has been quite the pal and Nikki, my granddaughter is a breath of delight. My omnipresent family and friends continue to keep me supported and I never feel alone.

I got this quiet indolent life. 

It’s a mad, mad, mad world!

Everyone is feeling the stress of our world, which seems to have gone crazy! Dealing with cancer is just another part of the stress.

My own world of living at the end of pancreatic cancer seems to be just one more element of change and uncertainty.

One of my goals for this blog was to be able to support people who are also living with end-stage cancer, pancreatic cancer, if possible. I was connected to a friend’s cousin who was diagnosed with stage 4 pancreatic cancer in March, 2020 and began a treatment regime of chemotherapy that paralleled my own experience. She was also a motivational factor behind my last post, Pro Tips. We spoke occasionally and while I was supposed to be her support and cheerleader, her model of survival, she was my support too. She was even more positive than me about her ability to fight this disease. Sadly, she lost her fight last week. Just 6 months into the battle. Her experience is the common experience with stage 4 pancreatic cancer. It reinforced for me that I am the “outlier”, the person who defies logic. 

Why am I surviving?  Should I be doing something to help this “gone crazy” world? One of my sons wisely chided me for that comment – “What! Do you think you should be doing something that would win you a Nobel Prize?”  Hm-m, no. But something??

Instead, I get to deal with another blockage of my bile duct. (What a terrible label of a body part). Another surgery. While my body didn’t like the experience of losing body parts in my younger years (appendectomy), it also doesn’t like to gain metallic body parts, such as stents. So, I spent an unexpected day in the hospital getting fluids, pain meds and every test available for infections while a brother from Cleveland visited and had the honor of caring for his sister. I left the hospital with another drug being added to my list of allergies with the rare reaction of the serious heebie jeebies, feeling overwhelming discomfort of being in my own body. A get-out-of-body anxiety reaction.

And as my body continues to react with pain, I’ve been informed I must learn to accept daily opiate use to combat the pain. I’ve reached that point in the progression of the disease.  It certainly is easier to pretend the disease isn’t winning when you don’t have pain. So, I’ve created a “druggie chart” to help monitor my drug use. But that doesn’t mean I will stop focusing on living. My thought processes have always been rather fluid, so most people won’t notice my new relaxed zen style.

So, what is a person to do….to help them survive as Wisconsin leads the nation in rising COVID cases? We purchased an outdoor gas fireplace, were gifted (from wonderful family members) an overhead gas heater that restaurants use and perhaps may have to build warming igloos so I don’t have to be so isolated in these winter months. Perhaps, my last months.

So, what is a person to do…when the political world seems in chaos, with a debate that belonged on VEEP. Wauwatosa is surviving days of serious protests that are only blocks from our home. One night after hearing the helicopters and protests all evening, a loud knocking woke us all from sleep, our dog barking and running in circles and my sleepy husband yelling about woodpeckers as he chased the dog. Chaos in our home with no explanation for the knocking. A mirror of the world.

As a therapist, I learned that the best stress reduction activity during times of anxiety, when there’s nothing you can do to change the world, is just do something normal. Keep to normal routines.

So, I’m cleaning windows. I hate cleaning windows. And clean windows doesn’t qualify for a Nobel prize. Each fall, I try unsuccessfully to clean them as I pull down the storm windows preparing for winter. For some crazy reason, this year it is calming me. It’s the normal activity I can connect with in a world that is anything but normal.

If I’m not out walking or napping, you will find me most days near a window with a rag in my hand, attempting to clean and trying to locate those nocturnal woodpeckers.