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!

I know someone…..

Stories of Cancer Survival

Whenever something happens in someone’s life, people have stories about someone they know who had a similar experience. 

Mostly that’s a good thing. 

It does normalize every situation when you hear so many people have experienced the same thing. It’s amazing to me how many people know someone who has had pancreatic cancer.  

Sometimes it’s their sister’s husband’s best friend’s uncle’s son. But, many times it was a parent, friend or someone they loved dearly. These are the tougher stories to hear. Sometimes people can’t actually tell their story because it’s just still too painful.

When I first became ill, I heard numerous stories of remarkable survival. Since most people don’t really know a person’s journey and are confused about pancreatic cancer stage 4, sometimes the stories didn’t seem that accurate or believable. That’s when the stories became hard to hear. 

Now that I have survived longer than any of us suspected possible, the stories have shifted to people who didn’t survive very long. The shift seems strange to me and these stories can be hard to hear too. Loss is so sad.

I never know if a story is going to helpful or haunting, so I listen to each story. I never want people to stop telling me their stories, I just need to be very prepared for what I’m about to hear.

I also realized that since it’s so unusual to survive so long, I may have become the main character in the stories people tell of someone they know who has survived. I hope I can keep this up to help with the stories. Also, I hope I provide an encouraging story for someone dealing with pancreatic cancer.

Pink Wigs

Hair loss – A side effect of chemotherapy

Thanksgiving is always a wonderful holiday to catch up with family and friends. Hectic, but less than the gift-giving frenzy and multiple family festivities of Christmas. So, this year we had the champagne signature cocktails, turkey and all the fixings, gatherings that included our growing family, as well as family who traveled from Cleveland and … pink wigs. 

Yes, pink wigs. With my chemo starting in a few days and knowing that my hair will begin to fall out before Christmas, I decided I needed a different, proactive approach to the emotional trauma of hair loss.

Losing one’s hair is an insulting experience. 

I thought I had prepared for it last time by cutting my hair short and wearing chemo headwear as the hair loss began. It began slowly. Then, one day in the shower it all fell out. I was covered in hair. The whole bathroom was covered in hair as my son tried to cut away what was left. It was a nightmare!

I admire people who can walk around with their bald heads. I felt like I was walking around in my underwear. It was also very cold! Who knew my thin little hair actually kept my head warm!

I also wasn’t a huge fan of my wig that was supposed to match my old hair. It was such a thick full head of hair, dealing with it was annoying. Who knew I liked my thin little hair so much.

I decided I needed an attitude adjustment this time or it would become another emotional insult.

So, I found pink wigs on Amazon!! They were all under $20. What a great discovery! I ordered 6 of them.  Immediately I rejected the first three. Too much wild hair. Insane colors.

So, this Thanksgiving I tried on the three remaining wigs and modeled them at a family gathering. One made me look like Patty Duke, the next, Carol Channing and the last, an Anime character. My brother took pictures of me in each one and sent them to family around the globe: Chicago, Cleveland, Japan, California. Votes were tallied.  

All of them won votes.  No decision was made.

But I won. With all the support I received: My new attitude did emerge. 

Everybody’s different.

Cancer impacts on everybody in different ways

We hear that sentence every time we go to the doctor. It’s the answer to most questions I ask.

What are the most frequent side effects of this treatment?    Everybody’s different.

Can’t you tell me how long most people stay on this treatment?   Everybody’s different.

Which treatments work best?   Everybody’s different.

If someone enters the same limbo world as me, how long do they stay there?   Everybody’s different.  

How long do most people live?      Everybody’s different.

I do understand that EVERYBODY’S different, but aren’t there some generalities? Similarities? Most-often case scenarios?  Seriously, how hard would it be to provide some guidelines or ideas of what I can expect?

Maybe other patients don’t keep asking these questions. Maybe I’m seeking answers to questions no one can answer. Maybe I’m driving doctors crazy asking for answers they don’t know.  

I know people have different needs for knowledge about their disease and treatment so……I guess that’s just another example of how everybody’s different.  ARG!

The waiting is over.

Living with pancreatic cancer causes a lot of waiting.

Honestly – I guess the party’s over too!

I’ve had a wonderful 9 months of weddings, travel, family and friends.  And PLANS!!! I could make actual PLANS!

The ct scans have shown slow and steady growth during my break in treatment. Now, the tumors are large enough to begin chemo again. Right away.

Change ~ that’s the hardest part. I really enjoyed my status quo. I liked feeling pretty normal. I did feel uncomfortable without treatment, just letting the cancer grow. But it was easier to pretend everything was okay because my world was so normal.

Honestly – I hate not being able to pretend anymore!

Another shift – change – my trusted doctor has begun a “retirement – phase – out” so I was scheduled with a new doctor with the option to return to the old doctor until he actually retired. I like this new doctor and his assertive approach to my treatment; presenting several options. He’s super knowledgeable; he studied me ~ my history.  I have been haunted by the question of getting a second opinion. Now, I have one and I feel returning to treatment will be charged with new energy.

Honestly – I hate treatment!  It’s gives me just half a life.

I am returning to my first chemo combination with a change in the schedule, spreading it out, and a significant reduction in the amount of the evil drug that caused a drug reaction. It really worked well the few months I was on it. Tumors shrank and tumor marker numbers fell dramatically. I hope it will do that again. 

Usually you meet with a nurse before you begin to review the side effects of the chemotherapy, so you can be prepared. I remember these drugs caused terrible side effects. My new doctor asked if I wanted to meet with a nurse to review again. It’s been two years. I probably forgot a lot of the side effects ~ fortunately.

Honestly – I told him…no, I’d rather be surprised. 

How did you discover you had pancreatic cancer?

Frequently it’s a fluke that pancreatic cancer is discovered.

That’s the most frequently asked question I hear. For good reason – there’s no early detection alert system available. And since the pancreas is a well-hidden organ within the body, tumors growing in it stay well-hidden too.

When it’s discovered, it’s usually too late to do much to stop the disease. I don’t like exploring the statistics because the numbers are terrifying for the prognosis of Stage 4 pancreatic cancer. Basically only about 20% live past 1 year. Less than 3% live 5 years. As I approached the anniversary of my 2nd year since diagnosis, I’m joining the 6% of people who are gifted this time. Terrifying!  

I focus on the fact that while the incidence of pancreatic cancer is increasing, the survival rate is also increasing. The five year rate today is based on people who were diagnosed 5 years ago. I’m part of the group of more recently diagnosed people who together are marching towards creating a higher survival rate.

My discovery story: As our lives are played out in a series of stories, my story is both similar and unique to most cancer patients.

I’m not the profile of a person who would develop the disease: smoking, overweight, diabetes, male and African American. None of these apply to me.

I did not have any of the usual symptoms: Pain (usually in the abdomen or back), weight loss, jaundice, nausea, pancreatitis or recent-onset diabetes 

I did have vague symptoms that I thought were caused by an ongoing flu: loss of appetite, change in stool, tiredness.

I also had a ball-bearing size lump in a gland near my collar bone that I mentioned to three different doctors in the year prior to diagnosis. All said to alert them if it changed. It did. 

My discovery gift was that I developed a 24 hour fever just days before Thanksgiving in 2017.  It went away and I was fine. Two weeks later it came back so I decided to seek medical care for this vague, never-ending flu-like crud. I mentioned to the Nurse Practitioner that I just hadn’t felt right for awhile and my ball-bearing lump had grown a twin. 

I could tell something didn’t sit right with her. She seemed to suspect something was wrong. She kept asking and asking if my stomach hurt. I kept answering no…. is it supposed to hurt?? When she left the room to consult, I could feel the start of quiet tears; I knew something was wrong. 

And so the testing began – fast! 

An ultrasound discovered the blocked bile duct causing the fevers, lack of appetite and changes in stools. A blocked bile duct is not uncommon with pancreatic cancer. A ct scan suggested a tumor was hiding in my pancreas. An x-ray revealed a field of small tumors covering my lungs. It wasn’t good news and it had spread. 

So, my journey had begun. I was terrified and overwhelmed as it began. Today, frequently I am still terrified and overwhelmed. But, I’m still here. And for that, I am grateful. I appreciate everyone who has stepped into this journey with me. And I am especially grateful to the nurse practitioner who really listened and believed me. Every day I make a plan for tomorrow and I expect to be here for it. And by the grace of God, so far, I have been.

What does the pancreas do?

Pancreas Pop Quiz

1. It’s a gland that secretes enzymes into the small intestine to help with digestion. It helps digest fats, proteins, carbohydrates, and cholesterol.
2. It’s a gland that secretes the hormone insulin into the bloodstream to help regulate the body’s glucose or sugar level. Problems here can lead to diabetes.
3. It’s a gland located behind the stomach and stretches across the back of the abdomen. Tucked in around many other organs, it’s very difficult to access.
4. I have no idea.

And the answer is….. All of the above.  (This was a trick quiz question!) (I used to love these when I taught – – evil teacher moment of fun)

Who knew what the pancreas did?  I might have guessed #2, connecting it with insulin; #4. I have no idea, would have been the more honest answer.

Realistically, most people don’t care what the pancreas does. It’s on a need to know basis. To be fair, I don’t really know what the gallbladder does. I know it can produce terrible stones similar to the hellish kidney stones my brother has experienced.  My sister had her gallbladder removed – so is it all that important? I had my appendix removed; does this somehow relate?

Maybe I should have taken biology. I never knew I would need to know information about organ body parts.  Will there also be math on this life quiz?

When I tell people I have pancreatic cancer, I realize it’s usually wise to tell them what the pancreas does.

The pancreas is actually two organs merged into one. Half takes care of providing insulin and regulates sugar in our body. The other half provides important digestive enzymes.  You can get a tumor growing on either side, thus causing two slightly different reactions. However, a tumor on either side can also impact the other side. It’s quite the magical mystery body organ!

Potential (and quiet) warning signs for pancreatic cancer

One of them is elevated blood sugar without accompanying weight gain. I had a minor increase in my glucose level right before I was diagnosed.

However, my tumor is growing on the digestive side. Now, I take creon, a pill version of the enzyme lipase which helps digest fats. Apparently my pancreas isn’t up to the job of digesting fats anymore.  It’s a little weird because there are no real guidelines to the amount of creon you are supposed to take. But, if you don’t take enough with each meal, you are gifted the consequence of The Troubles. (That’s my polite way of referring to diarrhea. My son got rather tired of hearing the word diarrhea, so I now use, The Troubles. I like that better too.)

Frequently I asked Alexa how much fat is in the food I am about to eat. She seems to have a remarkable knowledge of the amount of fat in food. I also have developed a freaky internal fat-activated warning mechanism. I can look at a delicious slice of pecan pie and wonder, would I tempt The Troubles if I eat that? To eat or not to eat?  A quiz. A voice inside frequently jumps into action: DON’T EVEN CONSIDER EATING THAT!

Sometimes I listen because failing this quiz has such unpleasant consequences. Usually I load up on creon and enjoy at least one bite!

Time to Meet the Pancreatic Oncologist…Dr. Death

I trust my doctor.

I do believe he is very invested in my health.  It takes a different kind of person to work with pancreatic cancer patients since we mostly die. Maybe it’s just the job itself that turns you into a different kind of person.

When we met my oncologist and his team of nurse practitioner and nurse, their main goal seemed to be to help me understand that pancreatic cancer is a fatal disease.

What about treatment – won’t that help?  What about remission – doesn’t that happen? I kept asking questions looking to find the magic door out of this disease.  And the answer that came back to each of my questions is that I have a fatal disease. 

Is Stage 4 Pancreatic Cancer a Fatal Disease?

My husband bravely asked how long I had to live.  Without treatment, most people live for about a year.

I have a fatal disease.

There are only two protocols of treatment. They begin with one and when it stops working, they try the next one.  Then, there’s the potential option of clinical trials. But, that’s about it. And they all eventually stop working.

I have a fatal disease.

Due to the focus on fatal disease, we dubbed the doctor a new name: Dr. Death.  The upside was that if he said anything positive, we would definitely believe him.

And lately, he has been very positive. I have small, slow growing tumors. And that’s good. Really good. It’s like a temporary remission, even though remission doesn’t really exist with stage 4 metastasized pancreatic cancer.

I have grown to depend on his honesty and directness. He’s become my true link to information; much better than the Internet!

He has also become very invested in my continued health. He likes that I am focused on being super healthy – exercising, eating well, traveling. He believes this is helping so that helps me continue my healthy habits even when I don’t want to!  After my last CAT scan, when the doctor left the room, the nurse quietly turned to me and said that my good scan “made his day”.

I trust my doctor.

Would you trust your doctor to manage your care if you had a fatal disease?

Overwhelmed

No one can ever truly imagine what it’s like to hear you have cancer  

Most of my extended family have had and survived, or have died from cancer.  Breast cancer, lung cancer, esophagus cancer, colon cancer, prostate cancer, liver cancer.  I was actually expecting breast cancer. That fact seemed woven into my life’s expectations. I was prepared to hear that news. I also assumed I would survive it.

I wasn’t expecting stage 4 metastasized pancreatic cancer. In my lymph nodes, lungs, liver and other parts unknown.

My first words were: You have just given me a death sentence.

And that is exactly how I felt. For those close to me, it was how they felt too.

Then I became so overwhelmed I could hardly comprehend the world around me. It was a blur. Phone calls. Medical tests. Phone calls.  Meetings with several different doctors. MRI, CT scan, PET, ultrasound, blood tests, x-rays, needles, phone calls. Endoscopy for a stint to be placed in a bile duct (I hate those words – they seem private, like bra. But also gross!) Biopsies. Bad news. Surgery to place a port. Phone calls.

And then pancreatitis

Pain, emergency room and hospitalization. I actually thought it was gas and waited over 12 hours to seek help. I waited overnight doing yoga to calm myself. When I walked into the e.r. I told them it was either gas or pancreatitis. I didn’t want to go to the emergency room for gas! I was so overwhelmed! Fortunately, they responded to the words: pancreatitis. They gave me pain meds and reprimanded me when I didn’t ask for more fast enough.

And they kept me in the hospital. But, at least for a couple of days the whirlwind stopped and I rested. I felt safe because someone else was in charge of my care and there was a fixable problem. But I didn’t really feel that good. Unfortunately, I’ve never felt fully well again. 

My whole life’s expectation changed in moments and that is the definition and sense of being overwhelmed.

Living My Life With Stage 4 Pancreatic Cancer

Why write a blog?

Hello to anyone who is reading this!

This is the beginning of my blog about living my life with Stage 4 Pancreatic Cancer—End stage.

I didn’t know you could live more than a couple weeks or months in end-stage.  Most people don’t, I guess.

I joked about writing this imaginary blog when I spent a year on a treatment that allowed me only 10 days to feel well enough to live a fairly normal life. (Actually normal doesn’t even really exist for me anymore!)  To earn those good days, I spent the previous 10 days living in post-chemo treatment physical hell – that also became normal in a perverse way.

Now I’m living in limbo.  Waiting. The treatments have stopped working. There are only two treatment protocols for people with pancreatic cancer. The first one worked, but it was going to kill me as I developed a toxic drug reaction. The second worked for a year before it stopped. That’s a long time in the chemo world.

Now, I wait. I wait for the tumors to grow large enough for me to qualify for a clinical trial. I have very “well-behaved” tumors apparently, so they are growing slow. I guess it’s not strange that a retired social worker and teacher would have a “well-behaved” anything. We do know something about training behavior.

I wait for symptoms to appear that will cause me distress (and possibly kill me) so they can treat the symptoms.

Waiting and not receiving treatment is wonderful.

It’s also very, very weird. 

Writing a blog seemed like it would take more energy than I had, so it was only an imaginary blog for a couple years. It’s a lot of fun writing an imaginary blog – no actual work, just ideas.

So, why am I writing it now?  Because I’m waiting and that takes a lot of energy too, but with a different kind of energy-suck. 

I’m also writing to honor those who are diagnosed with Stage Four Pancreatic Cancer. You might live longer than you expect and I want you to have someone who tells you what that’s like. There aren’t many role models for people with this because, well, they’re usually gone. So, this is for you. Maybe your journey will be similar to mine.  Actually, it will probably be very different because “everyone is different.” Even still, maybe this will still be a bit of a guide.