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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.

Pro Tips

How to survive cancer treatment!

When I was teaching psychology and began a new unit, I always liked to begin with an introductory activity. I hope the students enjoyed them as much as I did! Prior to the unit on stress, I had the students stand up individually and sing. Wow! What a great stress creator!  Sometimes it evolved into a talent show and even, on occasion, a dance-off! Some students became angry and refused to participate – I respected that. It was an evil activity, which is why I loved it!  When we were discussing self-esteem, I’d begin showing pictures with sayings that were the opposite of positive uplifting expressions, as shown in the image. Yes, evil again!

I don’t believe I made a mistake and gave myself stage 4 pancreatic cancer – Thank God! However, I do believe it has allowed me to become a mini “Pro” in dealing with a serious medical issue and the medical profession. I have had to figure out a lot on my own, and through discussions with others, so I do feel I can be a ‘warning’ or guide for others.

The first year I was diagnosed I heard numerous stories about the amazing survival of others with stage 4 pancreatic cancer and other horrific diseases. However, I believed my own Dr. Death, who said I had a fatal disease and most people don’t last a year; so the stories of survival were difficult to hear sometimes. I felt an angry jealousy towards those who won the prize of survival. Now, that I am still alive, I feel I have become the symbol of survival in the stories people tell to other ill people. I understand that my survival might also be difficult for others to hear – happy for me, sad for themselves. It can make you feel like an evil person to be jealous of someone’s amazing survival. 

So, as a survival guide, I thought I would share some “Pro tips” to help those dealing with the medical profession.

-It’s the patient’s job to follow up on everything the physician says he/she is going to do with the follow-up plans. Did the doc make the referral to the specialist? Did the prescription get sent? Did the office order that test? You are one patient and the doc has hundreds! You are your best advocate and it’s your job now. 

-Stay off the Internet. 

-When the doctor says, we’ll “just” do this surgical procedure and it will help with the pain, they make it sound so easy. It’s never, NEVER easy.

-Even though they did give me a “Welcome to Cancer” binder, which does have lots of good information, they forget to tell you some important small details. For instance there is a cream, called Emla Cream, that you can spread on the skin over your port that numbs it before they insert the rather fierce-looking needle. I apply the cream an hour before the lab or procedure, and cover it with a saran square taped with athletic tape. For some it works – like me! I also remind the technician and nurse to hold the port tight because it slips and skin held tight doesn’t hurt as much when the needle is inserted.  You need to wear button shirts for procedures so they get easily reach your port.

-Reread that binder every once in a while because the information is overwhelming and things change in your medical life so you pick up new pieces of knowledge each time you read it. But, I try not to read much about the side effects of chemo. Who wants to know all that?

-Lysine, an over-the-counter amino acid gets rid of mouth sores (even if you don’t have chemo).

-Thanks to online medical charts, you have access to test results before your meeting with the doctor. While it’s important to read it before appointments so you can prepare questions for the doctor, think twice about reading it. I’d always misinterpret the information and recheck my will every time I read the report, consulting with my equally alarmed sister, because we are always sure the results indicated that I was a goner.

-Check with pharmacists with every new medication so you really understand both the medication, side effects, how to deal with the side effects and interactions with foods and other meds. They have so much more information than the medical office. However, the medical office also knows impact details the pharmacists don’t realize are significant with your cancer. I liked the hospital’s pharmacy in the Cancer Center. They know a lot. Plus, the regular, over-the-counter (otc) meds are super cheap there.

-The doctor’s nurse, nurse practitioner, or physician’s assistant know a LOT of practical information and they have much more time to spend answering your questions. 

-The nurses in the chemo day hospital and chemo urgent care know a LOT and have good suggestions. But, they see so many different cancers, you have to be a little careful and double check what they say with your doctor for your particular cancer. They were the ones who told me to take claritin before, and for several days after, my neulasta shot. It can help reduce the pain of bones aches it causes. 

-The nurses frequently encouraged and reprimanded me for not taking enough pain and anti-nausea medications. Take the meds! Preventively. They work better that way; the nurses are right. Bring your own meds (pain, anti-diarrhea) to treatment; it’s easier too use your own than have it ordered. Tell the nurses when you take something.

-Walk. It helps with nausea, pain, energy, spirits, appetite and everything. Walk every day even if it’s only one house down and back. It’s magic. In winter I wear every winter article I own for warmth, including my mother’s old mink coat over my own winter coat with several scarves and hats. Once when I stopped to enjoy watching small children playing in the snow, one boy looked at me and said, “You look scary!” I bet I did!

-Eating and drinking can be very hard to do. I appreciate food repulsion experienced by someone who has lived with anorexia. I watch cooking shows (but seriously tired of the yelling chef) and read cooking magazines. I bought all kinds of drinks and foods and used all my fancy drink glasses lined up on the table, each with a different drink to push my drinking.

-Understand your insurance!!  Check coverage. Check in-network. Check pre-authorization, copay, coinsurance – what is all this? Recheck. Usually I hit my deductible by mid-January and my out-of-pocket maximum by the end of January. My hospital has a financial navigator for me. They are very helpful. 

-Everything breaks in your house when you have cancer. 

-It’s okay – be angry, scared, sad, overwhelmed, frustrated, unhappy, cheated. Being positive is overrated.

Just one more thought. There are no words to describe the overwhelming feelings when dealing with cancer, but fortunately there are words for prayers and words for “I love you” from friends and families. 

(This blog post is dedicated to my dear friend who was just diagnosed with colon cancer)

What I haven’t missed!

Still living…….just with cancer

When you know you have limited time, I suppose it’s super easy to get caught up in what you are going to miss. And believe me when I say, I do think about all the things I won’t get to do. The future is always so magical. My son once told me that when he feels like he’s moving forward in his life, even current despair seems to lighten. 

I don’t know how much forward movement I will be granted; I do feel the impacts of a growing cancer. Replacing my vitamins when they are empty can cause stress – – how many tablets per bottle will I still be here to take? 60? 120? Or should I even bother to take them any more? Should I get the COVID vaccine when it gets here or should I let someone who will live more years take the precious dose? 

However, in the meantime I also think about what I haven’t missed since I was diagnosed. In three months, I will cross the three year mark and I’m still here. Most people with stage 4 pancreatic cancer live less than 1 year – – – and every day I think about that.

The most important thing I haven’t missed is meeting my GRANDDAUGHTER – Nikki, the Little Lady!  Not only did I get to see her within days of her birth, I have been able to see her transform from a cuddly beautiful newborn into a sweet disarming infant who reacts by smiling and cooing when I play with her. I have actually been able to play with my amazing granddaughter as I enjoy the gift of babysitting!!

I’ve also seen my son and my wonderful daughter-in-law blossom into beautiful loving parents and mature new homeowners. I was able to attend their wedding the previous year and have a fabulous time with family and friends sharing in the event. We all stayed in the same hotel, so for me, it was a weekend of numerous festivities. The hotel’s breakfast buffet was a mingling event for me! Even my hair cooperated and grew in for the occasion as I was on a prolonged chemo holiday. No chemo meant I could dance into the wee hours of the night after the rehearsal dinner (ok, it was only 11:pm, but for me that is an hour I only see if I wake up in the night).

I enjoyed the accomplishment of another son as he completed his first electronic music song and could finally call himself a musician, realizing a dream he had for many years. I was able to be a supportive Mom, as he transitioned his career into digital marketing and moved to Chicago. Hopefully, COVID will allow him to branch out into a new life there!

I’ve been able to see my final son grow into his chemistry world and make his mark by building a database to organize and schedule studies for his company. He is moving forward in his life with his dear girlfriend as they begin the process of “adulting” by searching for a home, hopefully on a lake to support their passion for the outdoors.

My husband and I have been gifted the care of a sweet dog, Riley, after the death of my neighbor. She has provided so much joy in my life and it warms my heart that Bill and Riley will have each other after I‘m gone. I have wanted a dog since I was diagnosed and it seems amazing to me that she did arrive.

I don’t forget to focus on all the other things – I’ve been able to see the blooming of my 99 daffodils this past spring again and the beauty of my gardens as they have finally matured. I get to see the glimmer of hope for the beginning of change in America through the Black Lives Movement. This is important to me for the foster babies I nurtured who are now adult black men and women in our fractured society. I have still been able to enjoy the world that is out there by kayaking, hiking, traveling to Door County etc, etc, etc.  The list goes on and on. All filled with things I never thought I would do again when I was first diagnosed.

I don’t fall asleep counting my blessings as Bing Crosby sang, but I do take a moment as often as I can and think of all the wonderful things I haven’t missed.

Preparing to Retire

A cancer diagnosis creates the need to organize one’s life

When I retired from SMHS, I began preparing for several years – cleansing files and old supplies. Teachers gather tons of supplies. I had numerous file cabinets, closets and a secret key that gave me access to countless wall cabinets. A shamefully huge collection. As technology entered the educational profession, the access to web activities displayed on my interactive Smart Board became available and the need for my hoarder lifestyle disappeared. Thus, the slow purging began. And it was very soothing. 

It helped me prepare to leave a profession, a lifestyle, I adored.

As I know my time here is limited, I feel like I am preparing to retire again. But how does one prepare?

My husband and I attended an outdoor service at United Methodist Church this past Sunday. The parsonage for the church is next door to our home and it was through the grace of the loss of Pastor Tim that we inherited our sweet dog, our Riley. Pastor Don Francis, our new neighbor, gave a sermon on how Jesus prepared for his crucifixion, praying in the garden of Gethsemane as he came to terms with his impending death. Pastor Don also shared a vivid dream he had the night before where he wasn’t prepared to give the sermon, oversleeping, changing shirts, trying to shave.

It’s frightening to not feel prepared.

When I see all those terrible disturbing images of young black men being killed suddenly in a police altercation and other men who are being shot during protests I feel so many emotions, but I am haunted by the fact that they didn’t have an opportunity to prepare. 

But what could they have done to prepare?  

In the true fashion of my Miller family, I have organized my finances, cleaned out the attic, closets and drawers. We are a family of planners! These activities have all been soothing and I feel, in a small way, I am helping my family. But am I really prepared?

My brother Mike shared a story during his visit, that when a very close family friend, Kay, was near death, he visited her with a couple cousins. He described that Kay asked my cousin, Father Phil…. what should I be thinking about? I believe she was asking the same question I am asking – how should I prepare?

I feel really lucky to still be here. I also feel lucky because mostly I feel pretty good. I push myself, even when I don’t feel good to be fully alive each day. I also feel it’s important for me, especially at this time in my life, to remember those who didn’t have the time to prepare.

I make sure I thank God every day for each day. More than my organizational planning, I hope this focus helps me prepare to retire from life.

Everything Happens for a Reason

It’s different when you have cancer

I really admire Kate Bowler who wrote, Everything Happens for a Reason. As I was diagnosed with cancer, her book hit the shelves and a few people sent it to me. It took me over two years to find the courage to read it.

Faced with my own battle with cancer, I didn’t want to read about someone’s success story based on optimism. I know I am accused of being a perpetual optimist, but I prefer being the realistic optimist. I have a fatal disease and no amount of optimism will change, nor cure that. And that sucks, by the way.

Numerous onslaughts of suggestions about what I can do to save myself, while I believe are really just part of everyone’s love language, have tended to make me feel that my dying is my fault because I’m not doing enough. (Though, some suggestions have been great. Thus, the conundrum.) I was afraid Kate’s book would be just another push: positivism will save my life!

While I don’t recommend this book for everyone, it was very helpful to read the words of someone who has experienced the same thoughts, fears, pain, daily anxieties! One of my favorite lines was her reaction to a comment someone might make at her future funeral to her husband – God, must have wanted to bring her home. Her thought: God, must be pretty sadistic! The idea that everything happens for a reason also suggests a sadistic God. When a neighbor said that sentence to her husband, he asked her to tell him the reason his wife was dying of cancer.

I’d rather believe: shit happens.

I hope people who read this book don’t believe it’s a prescription to help them respond to someone they care about who has cancer or is facing a tragedy because everyone is different, has individualist responses. I don’t believe the author intended to be the spokesperson for the struggling masses. I believe she just wanted to share her experience. That is why I’m writing this blog.

I do believe people reach out to care about others in trouble and don’t know what to do, especially when there isn’t anything they can do. I forgive them for their stumbles. I’d rather they try, rather than do or say nothing. We all say and do things with good intentions and it’s just wrong. Even my responses to people who are reaching out to me can be wrong.

Once I dropped off a wildly unhealthy dessert to a friend’s home after her miscarriage and as I handed it to her husband at the door, I said: I’ve had several miscarriage and eating wonderful decadent treats always helped me so I brought this to you. He said: I’m so glad to hear you’ve had miscarriages. He was aghast immediately. I laughed because I knew he meant: You understand. The nice part of reading Kate’s book was that she understood what it feels like to face the threat of death, even though I didn’t agree with all she wrote.

The truisms that I struggle with? It’s actually the well-meaning attempts to normalize my experiences: Everyone’s tired these days. I can’t remember things anymore either. We’re all dying too.

It’s different when you have cancer. Life isn’t normal anymore. Shit is happening.