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.

Life’s Lessons

I am beginning to really wonder what will be next for me. Next in terms of how ill I might become. Next in terms of what begins after life ends. With those thoughts, I have begun to reflect a bit on my life and, as I’ve shared, I’m proud of many parts of my life and who I am. Perhaps that helps me prepare.

Recently a few of my family members and I were laughing about the trouble some of them got into as teens. A couple of us taunted them about their lack of ability to avoid getting caught. We were smarter, of course! My sister, who had been grounded for a least a year of her life, challenged me, asking what had I ever done!

I thought about that. I wasn’t a troublemaker, but I certainly had a lot of fun. I think all teens and young adults learn solid life’s lessons through their behavioral choices, whether they get caught or escape adult retribution. 

So, what did I learn?

NO ONE will believe that you really did pull up the emergency brake on your father’s car, the karmann ghia, before it launched itself over the cliff on the night he lost the election for Lt Governor. Especially when there wasn’t insurance on the car. I still believe we could have driven it down the beach and up the distant hill and no one would have known, but my friend Terry insisted the engine was in the back seat. I should have at least tried; Always try.

Nuns really liked all their encyclopedias in the 60’s! Every book. It’s not a good idea to stash the “P” in the bottom of your locker and forget about it. They will threaten the entire student body with fines, suspensions and worse if they don’t locate it. Thank you Terry, for helping me get it back with great stealth.

Nuns do NOT like when the entire senior class appears to laugh at you. Also, perhaps it’s a good idea to attend the NHS meetings. In the 60’s only a select few were invited into NHS. I never understood why I was included. I really didn’t fit in with people who wrote math problems on the board for fun after school. When you aren’t at meetings, they assign you laughable poems to read during the whole school NHS induction for new members. “Up, Lad Up!” What kind of a poem begins like that? After cueing most of my friends on the ridiculous nature of my poem, they broke into laughter as I began, followed by the rest of the senior class. I shook my candle back and forth enjoying pretend anxiety at presenting. I had to leave the stage after reading only the first and last lines because I was about to join everyone in laughter. Unfortunately, it feels really strange to be able to leave the school and go home when the entire senior class is serving a detention for laughing at you, especially when you instigated it.

Nuns value the editor of the year book. As editor, I was able to leave school, with a couple friends to help, on a regular basis senior year to “go pick up canisters of film”.  Five canisters would fit in the palm of my hand; I didn’t need help, nor that much film. It always amazed me that the close-talking chemistry/biology nun didn’t smell the McDonalds and cigarettes on us as we explained why we were so frequently late to class! (Actually, perhaps she did!)

-However, Nuns do not like when you write “rich bitches from the heights” in shoe polish on your car and then attend graduation practice at the church to hand out yearbooks in it. They can be stealth too, as the principal nun was able to slip into the backseat of my car to inform me that my car would be cleaned immediately. You can definitely clean many shoe-polish-written expressions off your car within 15 minutes if you want to attend graduation. After many Saturday detentions, I even learned the value of actually polishing those saddle shoes on inspection days. Loved that shoe polish!

Parties without parents at home are never a good idea. Siblings, if you wanted to have that party while Mom and other siblings were on vacation in Canada, just have it when your informant neighbor was also on vacation. If you wanted to attend that party on New Year’s Eve without someone else’s parents being home, leave very quickly after someone knocks over the china hutch. Finally, the roof was a perfect place to hang out at a party with boyfriend du jour, especially on those large houses on Fairmont Blvd. It’s easy to see police arrive, usher everyone out and relax because they never actually look up.

Learn directions. Probably not the best idea for two naive girls to travel from the east side of Cleveland to St. Ignatius’s theater department on the west side to pick up prom decorations during the ‘60’s. Getting lost and arriving in Hough, an area filled with serious civil unrest, was bound to happen – that is, with two naked mannequins laying full out in the back of my station wagon. We were probably accurate that no ticket would be issued as we traveled well above the speed limit through every light until we found our way home.

Champagne bottles come alive when they hit the ground! One of my favorite high school events was the opportunity to participate with some friends, as volunteers at John Glenn’s fundraiser organized, in part, by my Dad. It was a star-studded event and we were all starry-eyed ladies selling raffle tickets. We even attended a private party back at John Glenn’s suite late in the evening; not actually sure we were invited. As I stepped back in the entrance hallway, I knocked into a table tipping over a bottle of champagne. I can still see that bottle, in slow motion, rocking back and forth until it finally hit the floor, coming alive and spraying champagne all the way into the living room – up and down the back of some tuxedoed man! He turned around with a shocked expression as if someone had just slapped him on the back. Having had his own share of champagne bottles that evening, he merely turned back to his conversation with the John Glenn crowd while the champagne dripped down his back. It was a good time for a group of hysterically laughing high school ladies to return to their own hotel rooms, probably waking up every sleeping guest along the way.

Of course there were other memories not ready for prime time, but the point here is….Yup, we all do learn some good life lessons, even while we are just having some teenage fun! Remembering does help prepare for what’s next.

WWFD?

Living with COVID and Cancer

I am definitely diagnosable with COVID OCD!

I asked my doctor for his suggestions on the precautions I should take with COVID lurking around every corner. He paused, looked at me and said, “For you, COVID would be fatal”.  Those words echo in my brain every time I leave the sanctuary of my home.

After years of subjecting myself to torturous treatments to extend my life, it seems incredibly foolish to take any risks. So, in turn I have developed compulsive patterns of behavior that serve to protect me, allay my fears and have obsessional thoughts about what additional behaviors I can begin to provide additional safety! 

I am secretly jealous of everyone who does not live with my fears and can walk bravely inside stores, restaurants and live their lives with a sense of normalcy. In turn, I am now the COVID police who looks at the risks people take and feels a sense of panic rage. And as I watch, most people don’t get the feared virus even with the risks they take. Where is the fairness?

I don’t want anyone to get the disease. I’d just be super happy if everyone developed my COVID OCD. Because if everyone shared my disorder with my obsessions and practiced my same compulsions, we’d all be safe and I could then live a more normal life. My risk would be reduced.

In spite of my new disorder, I do continue to focus on living a life I enjoy. Most of the time I feel really good. Everyone I know mimics my protective compulsions when they are near me to keep me safe. I seriously appreciate that. I know and am related to really good people. 

And I have a new hero…. Dr Fauci.  A friend sent me a link to an article where health professionals described how they are personally living their lives. I actually read only what my new hero was doing in his life and it seemed to match well with my COVID OCD, so it gave me guidance.

Now, when I worry about an activity I am about to engage in, to calm myself, I ask:  WWFD?

(What Would Fauci Do?) 

Stayin’ Alive; Stayin’ Alive

Living a life with cancer.

I’m okay!

I think people believe I’m already in bed on the brink of death. So not true. I probably look healthier than I have in the last 6-8 months on chemo!  I walk 2-3 miles most days – today I walked 4½ miles. Also, I can finally ride my bike about 10 miles again! I enjoy almost a full glass of wine whenever I want.  So, do not worry about me, just yet.  

I am writing this from Door County, my own heaven on earth. I stopped by the National Shrine Our Lady of Good Help on the way to Door. According to their website “the Blessed Virgin Mary appeared there to Adele Brise in 1859. It is a humble, quiet place of refuge, noble in simplicity…” It is my refuge; my place for prayer, mindfulness and simplicity.

As I decided that it was time to enjoy my life with “feeling well time”, I am focusing on my simple lifestyle, my synergy as I call it. I try to eat well, sleep good hours, continue my exercising everyday, believe in the healing power of people, space in the outdoors, my beliefs in God and positivity. 

Being on chemo won’t change the outcome, but it will make my present life unbelievably hard. So, I am forging forward living. I’m awaiting the joy in the birth of my first grandchild, a girl, in July!  My adoring dog, Riley just arrived on my doorstep April 30th. Who knew in one’s time of need, a little angel would appear who needs loving too. She lived next door, but was so shy I hardly knew her. When her own loving owner, Pastor Tim suddenly passed on, Riley needed a home and we needed her. My spunky new best friend has been a great adventure.

The doctor can’t predict how long I have to live, so I decided I will be here for at least a year. It’s like one of those curiosity questions people ask… if you knew you only had a year to live, what would you do?  My answer: just what I’m doing. I’ve lived a life I’ve loved (most of the time). Sometimes I’m just fine with this and other times I am sad and sometimes angry. I worry more about the people who love me. 

Overall I’m okay.

Now, this writing begs the question for you……  if you only had one year to live, are you already living a life you love? 

When the Street Lights Come on

Making decisions about chemotherapy.

When we were young in my neighborhood, we seemed to have a universal curfew – – when the street lights came on, everyone went home. It worked great with the seasons as we were naturally able to stay out longer in the summer. I thought about that recently when my brother visited. As all our solar lighting in the backyard turned on, it seemed that was his cue to call it a night and go home.

For metastatic pancreatic cancer, there are two main treatments (standard of care), both of which are a cocktail of two – four drugs. This is a fairly recent approach; combining treatments seems to work better. Sometimes one works better than the other, sometimes neither work; it’s all unique for each person. Most clinical trials are tied to one or the other main treatment, using new drugs to upgrade the treatment. So far, most clinical trials fail for pancreatic cancer, so it’s important to combine with a treatment that does sometimes work. Sadly, neither main treatment works for long.

I have been on both main treatments. One worked better for me than most people experience. I feel lucky for that. The other seemed designed to harm me. I never qualified for clinical trials; the two that rejected me for having too small tumors, failed.

All chemotherapy is toxic. The longer you stay on it, the more toxicity develops and remains in your body. As the toxicity increases in your body, the worse you feel, the side effects worsen with subsequent chemo and those chemos have less chance of working.

I tried the newest released drug for pancreatic cancer and it did work……for a moment. The cat scan and tumor marker tests at the three month mark recently confirmed it is no longer working. The cancer is growing. 

There are a couple options for me to consider, however, the chances of them working, with my level of toxicity after 2½ years of chemo, is less than 10%. It would take 3 months with, probably, significant side effects to even determine if it’s working. 

Reality check: I would be trading 3 months of feeling well, for 3 months of serious horribleness for a 10% chance of success.

Occasionally in our lives we have to make very difficult decisions. For me, though, this one was pretty clear. It was just tough to actually say out loud. To people I love.  

There are people who would never feel okay if they didn’t strive to do everything in their power to try, even in the face of serious adversity. There are other people who focus on the value of the quality of one’s life as their driving force. I think I’m both. I believe it’s the reason I’m still here today. I tried both the western medical chemo options combined with my holistic synergy lifestyle. 

So, I made the decision. I have stopped chemotherapy and will only focus on my holistic synergy approach.

I am choosing quality of life as my only path now.  

I have been off chemo for two weeks and I feel pretty wonderfully okay. I can bike ride, play tennis, walk for miles, eat great food and nap only if I want, not because I’ve run out of steam for the rest of the day. As much as COVID allows me, I can visit with family, friends and enjoy a small glass of wine. 

I feel at peace with my decision. At this point, my time for living with pancreatic cancer would not be super long with or without chemo. So, I choose to be well during this time. I plan to be here as long as possible to enjoy everything, as I’ve always enjoyed everything. This is a hard journey sometimes, and I do have ups and downs. I’ve taken good advice from a friend and cry a little each day, just to help me keep up. 

Because I know I will have to go home when those street lights come on.

Chemical Fog

Chemo brain is real.

Combine chemo brain with “old lady’s brain” and thinking becomes an adventure.

Everyone forgets why they went into a room. To get what?? Just go back to the previous room and the thought of what you were going to do magically returns to your brain. That’s the old person’s brain. With chemo brain added in, you don’t remember where you just came from!

Word retrieval problem: At first it was annoying that in a middle of a sentence I couldn’t remember a word. But everyone does that and just needs to slow it down, substitute a word or describe what they mean. With chemo brain, I can forget what I’m even talking about while I’m talking about it. I can’t find common words, like tree, as I’m looking at one! In Psychology, we call it the “tip of the tongue phenomenon”. (I love that Psychology has the words for everything) (The room problem is called context dependent memory)

Chemo brain increases as I get the chemo and slowly ebbs away into just old lady brain after a week or so. When I’ve had even a sip of alcohol, I’m tired or stressed, it comes on in full force. I actually can feel a sense of a fog develop in my brain. Now that I take chemo in a daily pill, chemo brain comes and goes at will. I’m getting used to talking as if I have expressive aphasia (finding those words and thoughts). People who see me regularly have increased their patience with me, suggest words or ideas I might be talking about and remind me of the topic.

Sometimes I don’t always understand what I read or hear. I thought Betty White had died. Thankfully not. Headlines in my paper that attempt a play on words or abbreviate their meaning can cause me to read most of an article before it dawns on me that they’re not talking about the economy (or anyone) actually playing hopscotch.

Once when I went for a walk, I realized I didn’t know where I was. I knew I couldn’t have gone too far so I kept walking until I recognized I was only a few blocks from home and was headed in the right direction. I always bring my phone when I walk now. I also make sure my husband has that “find your lost wandering loved one” app. 

Multi-tasking?  No longer an option. 

Once, while in the middle of a difficult chemo, I went walking with a dear friend who had just discovered she was in early stages of Alzheimer’s Disease. We were both comfortable enough to laugh when neither of us could remember what we were talking about and just moved on to a different topic or walked with a comfortable silence.  I’m not alone struggling with illness.

Usually I’m cognitively okay. Most of the time, people don’t notice my lags. I’m more comfortable with it now and just go with the flow. Though, I do often wonder how the comments I write on my students’ paper sound to them!!

I have really slowed down in life and I like the feeling. Slowing down helps as I try to cognitively figure out the world from a new perspective. It also helps as I continue to wait to see a solid pattern of improvement in tumor marker numbers; I am just happy there has been the start of a pattern. I know this pandemic has created a weird new world for everyone, but for me, it’s just another aspect of my new perspective.

Major Affective Disorder, Pleasant Type

Cancer and Attitude

“It is proposed that happiness be classified as a psychiatric disorder and be included in future editions of the major diagnostic manuals. In a review of the relevant literature it is shown that happiness is statistically abnormal, consists of a discrete cluster of symptoms, is associated with a range of cognitive abnormalities, and probably reflects the abnormal functioning of the central nervous system.” (Link to article)

I’ve been accused of being happy my whole life. Sometimes even called nicknames, like Mary Poppins. Is that an insult or a compliment? One never knows for sure.

When I met my first doctor for pancreatic cancer he informed me, in no uncertain terms, that I had a fatal disease and without treatment, most people don’t survive a year. (Even with treatment most don’t either). Then without missing a beat, I received almost a lecture from the nurse about staying positive – those who have a positive attitude live longer. Through my tears, all I could think was – – are you kidding me?  Since I was so upset she looked at me skeptically when I told her I was a very positive person – don’t positive people cry?

Yes, I do have that positive attitude, which has always co-existed with my diagnosable happiness.  I feel I was just lucky to be born with a happy gene.

But I don’t believe a positive attitude means that I am happy all the time. I like to think of myself as a positive realist. I have accepted that each day I live is an actual gift and I truly may not be here in 6 months or a year.

But I’ve also been very angry about it, and many times feel sad and hopeless. Being positive just means you believe in tomorrow. And I do believe I will be here tomorrow.

I also believe that prayers have helped keep me here as much as any happiness gene or positive attitude.

I also believe this isolation, stay at home stuff was created just to protect me!!!  (See the connection to that disorder?)

So, I, sort of, received some, maybe potentially promising news, that perhaps, but not necessarily, this current chemo treatment, which still gives me “the terribles”, might possibly be almost beginning to help me fight this cancer. Only time and a trend of improvement will help us, maybe, know a little more convincingly, but never really for sure. 

How’s that for positivity?

Bright Candles

The rather weird knowledge that your life has a closer end date than you thought may help some prepare. For me, preparing has been calming. I did organize my finances. I cleaned out some closets, but truthfully that bores me so much, I always quit. I organize things so it looks less messy, but don’t throw out much. What if I need this 40 year old scarf??

I’ve also had some time to think about my life without having to wait for that sudden movie reel flashback people describe at a near-death experience. As Frank Sinatra said – I’ve had my ups and downs and did it my way. No serious incidents! 

My favorite memories of my life certainly revolve around family, friends and those simple moments.

But, here’s what I want to leave behind. Where I found the most joy in my life was the time I spent giving to others. Volunteering.

I began volunteering as a child, guided by Martha Manring, my parenting role model, mother of one of my dear friends. Molly and I played with a young boy with cerebral palsy helping him exercise, socialize and giving his Mom a break. Not a big deal for me at the time. But it started my path.

I became a hospital volunteer, a Candy Striper. I think I just liked the uniform. I began in the basement of the hospital filing lab slips, ALONE for hours. Didn’t work well for me – I crave social interaction. They transferred me to delivering flowers, which also didn’t work well. I was noticeably terrorized by older very ill patients. Quickly they moved me to the snack bar where I served hospital staff food. I found my place in life! I also learned the importance of volunteering within your comfort zone!

My volunteering varied: phone hotlines, schools, traveling to New Orleans with high school students and teachers for Katrina clean-up, bringing van loads of students to work Habitat in Iowa, political mail drops, Eucharistic minister, cleaning kitchens at Ronald McDonald House, ushering plays, Tosa Farmers Market board, and so on. I gained more than I gave at each volunteer opportunity.  I made a lot of good friends too!

My favorite, by far, was picking up newborn babies at area hospitals and providing a safe home for each until an adoption plan was made or they returned to their birth parent.  The reward for my whole family outweighed the painful lack of sleep! I still keep each baby in my heart. 

Pope Francis recently said “Each and everyone of us can become a bright candle, a reminder that light can overcome darkness”. I hope that when people think about me, they remember how much I loved giving to others. I hope that inspires all of you to think of ways you could reach out and become a bright candle somewhere in your own world. 

Right now, during this pandemic, we are all trying to find ways to reach out. So many people must have me on their list. And I’m doing okay. The new oral chemo does make me feel that when Scotty beamed me up, I arrived with my molecules reorganized in a slightly painful weird pattern. But I’m surviving and still waiting to find out if this is working. Not sure, but hoping. My white count has dropped so I’m staying safely at home. But not feeling alone, thanks to all the bright candles in my life.

The Cancer Card

When my husband discovered he had prostate cancer years ago, we began using the term “cancer card” as a type of “get out of jail free” card for certain situations. I doubted it actually worked and we joked about using it a lot more than we ever considered using it. So, now I have my own cancer card.

For instance, why should I have to wait in long lines? (if I could be out there in any lines) If I don’t have much time left, doesn’t that just seem like a waste of the time I have?  But, I wait anyway – you never know what other people are dealing with too.

Early last month I decided to venture out in weather that turned into quite a snowstorm, even though I was still in the throes of the “horribles” from my previous chemo. I needed my bananas and yogurt. My wonderful Prius decided not to start when I returned to the car from the store. I never had electronic troubles with my Prius and the messages on the dashboard kept flashing nonsense. So, I called my hero, Mr. AAA. Apparently I have several batteries in my Prius and one of them decided to start sputtering. Mr. AAA asked me to get out my key fob and gave me instructions to go through a series of steps with it – locking, setting of the alarm, unlocking, pushing the on button with it..blah, blah, serious blah. I had no idea what he was talking about. He calmly repeated the instructions several times. I probably wouldn’t have understood him anyway, but the chemo enhanced my state of confusion to the point where I finally had to look at him and admit I just had chemo and just couldn’t follow his directions. An honest use of the cancer card.

Mr. AAA Hero leaped into the driver’s seat and took charge. It didn’t look like it was going to work, but he kept going with a surge of tenacity and magical button pushing until the car finally started. He would probably have worked just as hard without my use of the cancer card, but I could see he became even more determined to make sure my car started instead of towing it. And I so appreciated his super-power efforts.  

My other hero, my husband, apparently had also arrived and I drove right past him as he was walking to my car to help save me. I was focused on trying not to hit other cars as I pulled into the street using Mr. AAA’s rather cool truck as my guide in the snowstorm.

My cancer card had worked and saved my day. Such a relief. I know it won’t help much in this current weird world. However, I’ll still be very careful with my card! 

Targeted Therapy

Hope: New Treatment with Cancer

Now we know: the chemo isn’t exactly working. Maybe a little because the tumor marker tests finally leveled off. But the cat scan showed progression, meaning growth. 

Another main reason I was removed from chemo was that I began running fevers and felt ongoing, horrible, flu-like body aches, pains and exhaustion so that I ended up in the day hospital for fluids and tests (thankfully this was before COVID 19 became an issue). “Feeling good days” became a distant memory. I pretty much stayed home the month of February near my bed and couch, which called me with such a sweet siren song that I needed a “help me, I’ve fallen in bed and can’t get out” alarm.

These past two years I have taken the two “standard of care” cocktails for pancreatic cancer. As with many metastatic cancers, tumor cells mutate and become resistant to treatment and the chemo stops working. Pancreatic cancer cells are masters at this.

Time to move on in treatment. 

I have had genetic testing of my own DNA (called germline testing) and of the tumor itself (called molecular profiling). I have a gene mutation that caused my pancreatic cancer. This good knowledge opens the door for a few more options in treatment.

The press always heralds amazing new treatments for cancers, but these are for other cancers, not pancreatic cancer. Well, well well – December 30, 2019 – the FDA approved the first new treatment for pancreatic cancer in FOUR YEARS!  

So, I am going on….a new drug…. a daily pill chemo …..Lynparza….

  • -a targeted therapy – which means it targets a specific process in the cancer tumor cells.  
  • -a PARP inhibitor – which means it blocks the cell’s DNA ability to duplicate, stopping growth. 
  • -it hits the tumor cell where it hurts.

It still has all those wonderful, unwelcomed, life impacting side effects.  Oh joy!

It also isn’t actually FDA approved for my specific genetic mutation, which is the ATM gene.  It is approved for the BRCA gene for pancreatic, ovarian and breast cancer. 

After an appeal, my insurance company magnanimously agreed to pay for my off-brand treatment. Very impressive! It’s not cheap.

So, we don’t know if this will work. It’s kind of an experiment, but not actually an experiment.

I have faith. The approval came so close to St. Patrick’s day, that somehow I magically believe I might have the luck of the Irish with this treatment. I’m also hoping my Irish Mom is smiling down on this one!