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!

Lions, Tigers and Coronavirus….Oh my!

How is your general health?……  Great, except for the cancer.

The whole world has changed in an instant and now everyone needs to be on alert to avoid catching or spreading this new virus. Sneezing and coughing in public will soon be illegal.

Especially near people who are high risk.

And that’s me!  And some of my very dear friends.

I’ve always been a healthy person – the one who doesn’t catch the viruses and flu. My youngest son even asked me once if I ever got sick. (I did, sometimes.) When I saw my new internist this past week, I answered the question – How is your general health?……  Great, except for the cancer.

Now, I’ve decided to isolate as much as I can. My pancreatic cancer has metastasized to my lungs so they are well covered with numerous nodules. Coronavirus is a respiratory virus; thus, I am a very serious high risk person.

Even before the day the world stopped, my new internist recommended I stay off all public transportation and away from crowds. He appeared concerned for my health. That was concerning. 

Elderly people are also at risk. So, how old is elderly? I asked my friend Alexa who lives in a machine in my dining room. She said those above age 65.  Great, now I’m elderly too. Double whammy. I actually believe we should call people from ages 65-70 pre-elderly. Especially if they still walk 2 miles most days and frequently dream about returning to play old lady soccer.

So, being pre-elderly, I remember swine flu, h1n1, in 2009. It was also a national emergency.  “On November 12, 2009, the CDC reported an estimated 22 million Americans had been infected with 2009 A H1N1 and 4,000 Americans have died.” (wikipedia)

For me, that flu was very real. I lost a dear friend to it.  

I was also exposed. I was teaching a class at MATC, Milwaukee area tech college. I teach the teachers so they can get certified. (I still teach the class online) One day a teacher/student brought the virus to class. By the next week another person had become symptomatic. Then the public health department and college shut down my class. Everyone passed, but I never heard if anyone else caught it. Thankfully, I didn’t. But I was not at risk back then. 

Isolation. I guess it’s time to get out my books, puzzles and clean out my closets. (Wait, let’s not go that far.)  However, it is time to respect the power of this virus and be smart. If everyone else will also be careful, people like me will be safe and stay alive. 

We need to be all in this together.

Dr. Google!

Internet Searches About Cancer: Friend or foe?

The whole first year after I was first diagnosed, I became afraid to research information about pancreatic cancer. No matter how they began each article or website, all I saw was: 

YOU ARE GOING TO DIE VERY VERY VERY SOON! 

The information also became overwhelming. I couldn’t understand anything I read. So, I stopped reading it. Though sometimes I would copy and paste words from my medical reports into google to see what they meant and suddenly I was transported into the Internet pancreatic doom and gloom world. Then the depression set in and I lost the moment; sometimes the day.

Now that I have statistically beaten a couple odds, I feel a little safer, but I’m still super careful about what I read. The site I trust the most is the Pancreatic Cancer Action Network, known by those who are in the “pancreatic know”, as PanCan.  If you are diagnosed with pancreatic cancer, it’s the place to begin and you will feel safe on that site, well ~ most of the time!  I have learned a lot from the site, especially from their webinars. 

Recently, my husband and I watched a webinar on the latest innovations in pancreatic cancer. I became excited when Dr. Andre Lowy from the University of California, San Diego mentioned that as part of a new national clinical research program, called Precision Promise, they are going to incorporate the importance of nutrition and exercise. Honestly, I don’t know exactly what he was talking about, but it connected so much with my whole synergy idea that I became excited. I don’t know if my synergy is working, but this statement seemed to suggest professionals were starting to consider it important.

So, I went onto the internet and did a little research with Dr Google and didn’t find much connecting Precision Promise and nutrition. This one article (link) discussed the three most important nutritional and physical impacts of pancreatic cancer on a person: cachexia, anorexia, and malabsorption. The article explains these: An estimated 85 percent of pancreatic cancer patients suffer from cancer cachexia, a condition that causes patients to lose significant muscle mass. Also, side effects of treatment, such as mouth sores or digestive problems, can make eating less appealing and lead to anorexia-related weight loss in patients. And if the cancer… hinders the normal functions of the pancreas, patients can become malnourished and lose weight, as they’re unable to digest food properly due to malabsorption.

Though I found the treatments listed on the chart for these conditions somewhat limited, I suspect that’s because traditional medicine is a bit limited in this area. My synergy approach is a more holistic approach and perhaps this is where holistic approaches could complement traditional treatments. 

I feel like this area needs more research and even more time on the Internet to see what else connects. However, I just can’t do more time on the Internet – I’ve reached my safety limit for today. Maybe another time.

Apricot seeds can cure cancer

Advice About Cancer

Similar to my experiences with stories people share about their best friend’s brother’s girl friend’s uncle… is advice. All of the advice is well-meaning and conveyed with hope. Sometimes it’s very helpful and can change my world. Sometimes it ends up making me feel that I’m doing everything wrong and my physical illness is a result of just not using the right products or doing the right things. 

I never know the advice will impact on me. 

Sometimes it focuses on miracle products that I should start using. Unfortunately, I don’t believe miracles come in the form of a product. But I do explore and research the information. I don’t have the time, nor energy to keep up with all research and really do appreciate when people share information they have found with me.

Apricot seeds can cure cancer. That’s the one piece of advice that stands out clearest for me from someone who cares deeply about me and took the time to write an actual letter. From prison. I researched it and found that while apricot seeds can kill cancer cells, it can also kill healthy cells and cause cyanide poisoning. But I still felt the great hope coming from this person, even though the information was so flawed. Great love is sometimes sent wrapped in advice.

What can you do for someone who has a devastating disease when there really isn’t anything you can do? Giving advice is one way to try to show your love and hope. 

So, I listen and have become grateful that people care enough to research information to give me advice. So, even though I won’t take those apricot seeds, I do still want information and advice, even when it can be hard to believe.

Up and Down

Living with cancer

That’s just how life goes – up and down, down and up. 

Thanks to everyone who reached out after my last post. The support I receive always surprises me, but it shouldn’t. There are tons of caring people out there who drop everything in their lives when they hear about someone in need. 

I’ve been doing better, then I wasn’t, then I was. Stress: so much fun. Everyone who is reading this knows what I mean. 

And so, we’re still waiting to see if this chemo is working. Waiting: so much fun. 

What do YOU do while you wait for any type of news? I’m learning to just focus on the day. 

There is a song that suggests we all should live like we’re dying. Sorry, that’s ridiculous – please don’t do that. I try to live like I’m living. 

I prefer the expression: make each day count. 

I also believe that we can’t always change our circumstances, but we can change the way we deal with it. 

That is helping me wait, knowing the chemo may not be working. It helps with the ups and downs. 

I try not to think of myself as someone dying from pancreatic cancer; I am trying to be someone living with pancreatic cancer. 

Yes, my husband and I did go cross country down the middle of the street yesterday in the snowstorm beating out the snow plows. So sweet. 

Hate Day

Emotional honesty is important in cancer survival

Today I hate everything and everyone. 

I hate everyone who is healthy. It’s just not fair. 

I hate tumor markers that are going up instead of down. Is this chemo even working?

I hate yoga. It’s painful. My body might feel good afterwards, but my hamstrings are too tight, my hips too damaged and I have no upper body strength to lift a leg in the air in downward facing dog. Who even thought that was a good idea. 

I hate kale and I believe people who like it have just not tasted butter lettuce. 

I hate chemo infusions, shots, pain and diarrhea. 

I hate clouds, clouds, clouds and cold and freezing drizzle. What’s wrong with this weather?

I hate impeachment day time tv. I hate everyone in Washington. This is all just to create the biggest loser. 

I hate anyone who can run a 5k or beyond. I really miss the freedom of a run. 

I hate anyone well enough to get up before 7:am and drive to work.  WAIT ~ WAIT ~ I’m retired. I don’t even want to do that. 

Okay, thanks. I feel better now. 

The Good Life

Cancer is the lemon in life ~ ~ you create the lemonade

As crazy as it sounds, there have been some good things, some benefits for my life that have appeared because I have cancer. I’ve been thinking about them lately and decided to share.

-I’m usually invited to the party. I feel very included in the social world and that’s a wonderful feeling.

-I get lots of “I love you’s”. People I care about have realized the importance of telling me that they care.  And I feel the same and share too. Such a simple thing, but it takes an impending loss for all of us to realize letting people know you love them is too often overlooked.

-I’m allowed to fart!  Pancreatic cancer is a digestive disorder so there are all sorts of indelicate body reactions. This disease is not for the faint of bowel sounds. So, I can go for a walk with my husband and toot merrily along, sometimes with the sounds of a marching band following us for the whole block. Such a relief it is!

-I can take naps!  It’s a sweet afternoon ~ with a siesta!

-I have slowed down enough to actually smell the flowers in my garden. Since I can’t promise my ability to follow through on commitments that evolve over time, I have avoided all kinds of committee work that would have sent me back to living in the fast lane. I loved being busy, but I have learned the joys of slow.

-I prioritize taking care of myself. To quote a friend with whom I explored life after retirement: my job now is taking care of my health. So massages, yoga, afternoon walks come before errands and chores.

-I don’t have to diet; gaining or maintaining weight is the plan now. Yes, I try to stick to my clean food diet, but hey ~ what’s the point of denying myself those simple pleasures of treats?

-A few people actually cheer when I walk into Zumba.  

The Magic of Synergy

Creating a state of health to battle cancer

My own personal blueprint for synergy

Each new year several members of my family decide on one word that will be our focused goal for the year. The year of my retirement my word was “Breathe”. I was working two jobs so I could retire from one and continue with the other, part-time, into retirement. I was crazy busy. The plan after the June’s retirement was to relax and breathe deeply.  

Then my word was remission – back when I thought remission might happen to someone with Stage 4 pancreatic cancer.

Last year my word was “Synergy”. I’ve decided “Synergy” will continue to be my word in 2020.

According to Google Dictionary, synergy is: the interaction or cooperation of two or more organizations, substances, or other agents to produce a combined effect greater than the sum of their separate effects. 

For me, the “agents” are a whole variety of healthy activities. The energy from all the healthy activities creates a synergy ~ ~ an overall state of health. 

I believe this synergy is working for me.  My doctors have agreed too ~ I hope it is contributing to the fact that I’m still here! 

I didn’t make up this concept – I participate in many webinars from PanCan about pancreatic cancer. I saw it discussed in one of the webinars, so I tweaked it to fit my own needs.

So, what are the healthy activities, you ask, that make up my own personal blueprint for synergy?

  • Physical activity – each day I plan to participate in at least one physical activity. These include walking, zumba, yoga, biking, kayaking and so on.  Movement of some type.
  • Social supports – I love having coffee, lunch, wine, walking outings with my friends and family. Each week I make sure I plan a few events to share with people close to me. 
  • Diet – I try to eat a diet low in…. fat, sugar, cholesterol, and carbs. Just to make sure it’s not boring, I break my diet regularly! However, I do focus on clean food eating as much as I can. Bread from the bakery with no additives, eggs from a farmer, farmers market produce, local grass-fed beef. Chocolate, however is a daily requirement!
  • Sleep – I am super lucky here; my body loves sleep! I do try to rest each afternoon and avoid powering through a day if I can. The exercise seems to really help me sleep! I used to be the energizer bunny all day and night and now I tend to run out of steam.
  • Managing stress – Yes, I do get a monthly massage! I also have gone to reiki each month, weekly meditation and yoga. I try to focus on the good stuff each week. This is where I depend on my social supports, especially to add some fun!
  • Faith – I do believe I feel the spiritual support from God and family members who have preceded me in death. The amazing prayers from friends and family sustain me. My favorite place to find peace is at The National Shrine of Our Lady of Good Help in New Franken, WI. I carry the Holy water from there with me.
  • Environment – I tend to feed off my environment so I find quiet places and those that nourish my curiosity. Thank you to all my friends and family who have hiked with me in sanctuary woods. I love the peace of Potter Lake when I kayak there. And I love the free museum days each month! My garden is my favorite escape.

Synergy is definitely a lifestyle and takes a lot of my time each day. Since I think it’s a bit magic, I get rather anxious if I’m not participating in my synergy world. I’ve also found that it’s a great way to spend the day! 

That’s why I decided to continue with synergy as my goal word for 2020. 

What would your word be?

I’m Still Standing!

It’s time to celebrate ~ my second year of survival of cancer.

It’s also time to be grateful.

I believe the number one reason I am still here today is because of all the people who have reached out to me with such love and care since my diagnosis!

Great thanks and love ~  ~

~to my husband for having to balance caring for me and for himself as we both travel on this difficult journey!

~to my sons. They have each been there for me. Phil has lived with my daily care with numerous journeys to the cancer center and seems to have the uncanny ability to know what I need. Tim is available on a moment’s notice and seems to call just when I need someone to call or realized I needed a ride. Steven comes into town and pushes me to walk and rejoin the world on days when I didn’t want to, but needed to; he’s helped me find my energy when I just wanted to lay on the couch forever.

~to my siblings who have all reached out in their many different and kind ways to let me know how important I am to each of them. Since both our parents and their siblings died young we have all been on “cancer watch” and have lived our lives in the moment, especially since, as one brother so aptly stated, some of us are beyond our expiration date.  They haven’t stopped pushing me to continue living my life and not let pancreatic cancer own every moment.  

~to my “fan club” who have sent at least one hundred cards and well wishes. I never knew how much a simple card can mean! I also received gifts and gifts and gifts! Prayer shawls, candy, treats, books, plants, pictures, heartfelt sayings, special religious items, clothes, socks, drive-by coffee dropped off in the front yard, special foods dropped on my porch, meals for my family, gift certificate for delivered food, activity books, blankets – I’m sorry I can’t even remember it all. The first year felt like it was a weekly Christmas.

~to everyone who has asked how I’m doing. As much as I want to live my life as normal as possible, I also don’t want my struggle ignored.

~ for all the calls and texts. People are afraid to call, but it can be terrible when no one calls. Since each person’s illness journey is different, I especially like when people have asked how they could stay in touch. I can ignore the calls when I can’t talk. I can talk when I need to. I liked when people remembered a tough day and sent a text to just say they were thinking about me.  

~for all the invitations. Wow!  I was not forgotten! I was included!  I went everywhere when I had those well moments. I have loved the walks, coffees, lunches, shopping, book clubs, parties, plays and sharing a glass of wine. I also appreciate those who have helped drive me to appointments. I’m blessed with such great friends.

~for all the prayers and prayer and prayers. I sincerely believe in the power of prayer. Thanks to my high school besties who reached out to a priest in Door County for me to receive the Sacrament of the Sick as they surrounding me with their love. I believe in it’s power.

Sometimes we don’t know what to do for someone when there really isn’t anything you can do. Throughout this journey, through the kind reaching out of everyone I know, I have learned what I can do for someone else. 

I hope this list of thanks helps you for other people in your life when they have a moment of need and there’s nothing you can do.  With your help, we can all remain standing!

The Side Effects Infomercial

The impacts of chemotherapy

Would you hook yourself up to an IV and drip drano into your body?

Of course not!

But that’s what I do every other week!

Cancerous cells multiple in a style that is disorganized and rapid to the point where they are basically out of control taking over and destroying organs or body parts in their path.

Chemotherapy works by killing cells that are dividing very quickly. Chemo drugs do not differentiate between cancer cells and the other fast dividing cells that reside in the stomach, mouth, intestines and other numerous areas of the body. Thus, as normal cells are killed and their dividing disrupted, the nasty side effects emerge.

Since normal cells divide in an organized rhythm, within several days or weeks, they return to normal subdividing with the side effects reduced.

Cancer cells divide in a sea of disorganization and they can take some time to restart dividing; thus they are usually hit with another dose of chemo before they gather dividing strength. This causes them to reduce, wither and hopeful die a painful death.

Every chemotherapy causes different side effects and every person experiences chemo differently. I’ve heard some people can sail right through it with minimal effect. I wish I were that person. Most people react significantly and move into a survival mode lifestyle after chemo.

Before you receive chemo, you get to sit with a nurse who reviews all the possible side effects to help you prepare. It’s like being terrorized by a side effect infomercial. 

So, what are these side effects?

Of course there’s the nausea. Also stomach aches, sharp stomach pains, hair loss, twinkling lights in the corner of your eyes, vision changes to blurriness, mouth sores, skin rashes, bloody nose, headaches, exhaustion so intense it feels you are trying to walk while on the bottom of the ocean, insomnia, severe body aches, bone aches, diarrhea, constipation, painful gas, loss of appetite, weight loss, inability to swallow food or drink while it’s in your mouth, loss of control of your hands, trigger fingers, painful cold reactions to touching cold things or being outside when it’s cold or swallowing cold things, loss of feeling in your toes and fingertips, muscle weakness, disorientation, memory loss, inability to pay attention, loss of balance and falling over unexpectedly, dehydration, muscle twitches, muscle cramping. Then there’s just that horrible painful chemo feeling.

I feel like I’m forgetting something. 

I try not to talk about side effects because as soon as I start describing them, I begin experiencing them. When the car enters the Cancer Center parking lot they all set in, even before treatment. 

So that’s why I’m writing this today so I can try to forget about them before I receive treatment tomorrow. 

Yikes!