Quality of Life

This weekend my husband and I stained our upper deck, and then we added some plants and furniture to the mix. We spent 10 hours yesterday staining and six hours today touching up spots, planting, and decorating.

We even planted catnip in a cat pot.

It was great.

However, I bruise easier than I use to, and my husband was mortified when he saw my knees. (They’re really not that bad.) He said he shouldn’t have let me do so much work.

I smiled and explained that I felt alive helping him stain. More importantly, I felt good. No fatigue, no pain, no cancer symptoms—just a husband and wife enjoying each other’s company.

Not like last year when I was painting the front of the house, on a ladder, while trying not to double over in pain. That was prediagnoses and I my quality if life was questionable.

I was constantly fighting fatigue, and I was constantly fighting abdominal and back pain. Even though I was healthy, or so I thought, I was doing very little to enjoy life.

It wasn’t until the pain was so severe it sent to the hospital did I finally start feeling better. Heck, lets be honest about the pain, every day I was rolling on the floor hugging my knees to my chest and sleeping only when the pain exhaustion knocked me out.

Now I feel great. Sure I’ve gone through 5 rounds of radiation, 17 rounds of chemo (18 this week), had a port inserted, biopsies, undergone several CT and PET scans, traveled to the Mayo, and came back from the brink of death, but I feel better than great. I feel like me again.

Dare I say, my quality of life now is better than before I learned about the cancer?

Do I wish cancer didn’t exist? Of course, but I’m also glad for what I’ve gained from my experience with cancer.

I’ve learned to not take the little things for granted. I’ve learned to love my husband harder. I’ve learned to better appreciate the people my children have grown into. I’ve also learned to appreciate what I have.

I may not have as long as I hope to live, but I love the life I have right now.

I am young.

I am healthy.

I have the best chance of beating the average.

I am enjoying a good quality of life on my newly stained deck.

FDA and Cannabinoids

Did you see the news?

“It’s not clear how or why CBD works, but studies show it does, the FDA said.”

My oncologist prescribed Marinol, synthetic cannabinoid, because I was loosing weight too fast, and I had absolutely no appetite. I was also in severe pain which only subsided when I took 60mg of morphine daily as well as up to 6 norco pills. My doc, and especially my husband, became very concerned about my ability to be strong enough to receive chemo and battle the cancer.

I was throwing up every time I ate or drank something. The Marinol was supposed to help with the nausea, but it did very little. We asked about CBD, legal in my neck of the woods, and he said “if it works, great, use it.” I started using Charlotte’s Web; the nausea subsided; I started eating, and I grew stronger. Food is fuel and that was what I needed to fight the cancer. Plus, the pain subsided as I grew stronger, and I left all the pain meds behind. Note: I am not claiming it cures cancer, but I am saying it helped with the cancer and treatment symptoms.

I read studies on the .gov database about CBD and pancreatic cancer, after I was prescribed Marinol, and found that other countries were studying the use of cannabinoids. Most of the studies were in the early phases, but cannabinoids showed promise. See: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2225529/ (“Cannabinoids have just recently been shown to exert growth inhibitory properties in pancreatic cancer.”)

The US has been sliding further behind other countries because of it’s heavy handed classification of all forms of cannabinoids. I am glad to see this reversal.

Sleep the Sleep

Finished up my fourth radiosurgery procedure, and I am discovering that sleep is my new best friend. It is my the companion that stays a little longer after every treatment.

Today, sleep came upon me within a couple hours of radiation, and it stayed with me for five hours. This wouldn’t normally be a problem, but now it’s nearly nine in the evening, and I have to get ready for work in about ten hours. However, I’m not sleepy.

It almost makes me miss the days I was not working just so I wouldn’t have to worry about not resting enough before work. In the past it wouldn’t have mattered if I slept until six or eleven then next morning. I guess I’m a little concerned that I will stay up too late and not rest enough.

However, it isn’t just the longer sleeps that I’m noticing that I need as I receive each additional radiosurgery, but I’m also noticing the nausea is lasting longer. Plus, I’m experiencing little aches and pains in my abdomen and back.

Stage IV pancreatic cancer symptoms, for me, included abdominal and back pain as well as long periods of sleep. Similar to what I am experiencing with radiation but on a larger scale, and that makes me nervous that the cancer is growing again.

My husband said that it’s unlikely the cancer would grow that fast, and he said the doctors wouldn’t risk radiosurgery if they didn’t think it would be beneficial.

I’m sure he’s right, but the chemo has shown it to be successful while radiation has only shown it causes nausea and drowsiness. I guess I’m a little scared that the radiation is not working while at the same moment I know something is happening, based on the symptoms.

It is my hope that the radiation is eating away at the cancer cells. It is also my hope the nausea and sleep means the radiation is working.

So I’m sitting here, tonight, catching reruns of eighties sitcoms while hoping sleep will come so my body can heal and the cancer can die.

 

Radiosurgery

Today I received the first of five radiation treatments, and it was uneventful for the most part.

The technicians we’re kind and the procedure was painless. However, it was also very revealing at times.

I don’t know how other radiation treatments work, but for pancreatic cancer you get to strip down to basically nothing. You’re provided with blankets while you’re on the scanner, but the techs have to pull the blankets off and on as they line up your radiation tattoos to the machine. Then they mark your abdomen with sharpies. The whole time a guy and gal tech hover over your nakedness.

It’s really very dehumanizing. I felt like an object. At one point I wondered if this was how pets feel at the vet’s office.

Once all the marking up and rearranging of my body was completed, the machine went to work. I laid perfectly still while the machine spun around me. Thankfully, I was covered with a blanket.

Calming music played and a picture of a blooming tree on the ceiling tried to ease the anxiety. It worked a little. I was still nervous about accidentally moving. But I stayed still.

Honestly, if I didn’t know what was going on I would have thought nothing happened. The procedure was quick and painless. I think from undressing to dressing, I was in and out within 20 minutes.

It wasn’t until about a half an hour later that I noticed the nausea.

In preparation I took an antinausea pill before the procedure, but apparently it wasn’t strong enough because the toilet and I soon became well acquainted again.

It’s been three hours since the treatment and my stomach still doth protest. It’s kinda like the first few rounds of chemo but not as severe.

So tonight I think I’ll rest. I may even try to eat something later.

 

 

Stepping into the Unknown

Tomorrow I will receive my first round of radiosurgery. It will be a proceeure that uses a high concentration beam on a small localized area. In this case, I will have radiosurgery on my pancreas.

At the time of my diagnosis last year I was told that I was not a candidate for surgery or radiation. The cancer had metastasized outside the original organ and to the liver. With stage IV pancreatic cancer, the standard line of treatment is very limited, and it doesn’t include radiation. This is because the past tries proved more harmful than helpful.

However, with the drastic reduction of tumors in my liver—-okay, the scans show no tumors in my liver which once housed nearly two dozen tumors—my oncologist and the oncologist at the Mayo said I was now a candidate for radiation.

There’s just one thing, though. The tumor in my pancreas is also gone, for the most part. There is a fuzzy haziness inside my pancreas. It could be inflammation. It could be scar tissue. It could also hold cancer cells. The idea behind the radiation is to attack the original source and hopefully knock out more cancer cells.

This procedure is not without risk. It does carry a 2% chance of fatality due to a nicked small intestine. When this procedure was in its infancy it carried a higher mortality rate.

Luckily, the radiosurgeon performing my procedure brought this procedure to my region, he was Chief Resident at the Mayo, he’s performed radiosurgery nearly a thousand times, and he is confident.

Even though I’m excited, I am also nervous.

Since I’m receiving radiosurgery, I will skip chemo for a month. What if the cancer starts to grow somewhere else because the chemo isn’t there to fight it? What if I move in the table and the doctor accidentally nicks my small intestine? What if this doesn’t work and the cancer comes back with a vengeance?

My oncologist said we are entering new territory. There is no standard of care for stage IV pancreatic cancer patients in remission. There is only individualized care, and this is the path my oncologists think best.

But I’m still scared.

I’m not a huge fan of personal unknowns. I like them in movies and haunted houses, but I don’t like them in the real world. Unknowns in reality carry real consequences.

My dear husband wanted to take my mind off things so he decided to play a favorite movie tonight, Field of Dreams.

The movie primarily takes place in Iowa, and it shows a family taking crazy risks in order pursue an even crazier goal. That goal was to build a baseball field for reasons they didn’t understand. Their passion helped them through the tough times of ridicule and financial destitution. As a family they supported each other and eventually others joined to support them too.

It’s a movie about redemption, love, and community. It is also a movie about having the courage to pursue your dreams.

I cried through most of the movie. I cried because I’ve been to the real Field of Dreams in Iowa. Our little family paid it a visit and played a game of baseball with other families who also drove to the Iowa movie site.

I looked at my husband and told him that I missed having the kids young. I so wanted to scoop them up and head back to the Field of Dreams so we could hide in the corn and play on the field.

My husband tried to comfort me by saying that we will take our grandkids some day. Our kids are young adults, not married, and they have no prospects of having children yet.

Pancreatic cancer is known for coming back and killing quickly. It has a low one year survivability rate, and an even smaller five year survivability. There is a very real chance I will not live to see my grandchildren.

I cried for the loss of never meeting them or getting to take them to the Field of Dreams.

Then in the movie Ray was reminded by Terrance, before he followed the players into the corn, that he needed to be strong in the unknowns.

I also need to remain strong within the unknowns.

I also need to remember that I am young.

I am healthy.

I have the best chance of beating the average.

I will go into radiation with confidence in the doctor. I will not move during the procedure. The cancer will not spread this month. The procedure will kill all the remaining cancer cells.

The cancer will not prevent me from living. It also will not stop me from dreaming.

Goodbye cancer

A Little Sadness

I’m a programming and outreach librarian, and I really love my job. However, I’ve been feeling sad about it too.

When I was first diagnosed with Stage IV pancreatic cancer I was told I would probably never go back to work, and if I did it would be part-time at most. However, I miraclously entered partial remission, and I was able to go back to work. Most weeks I clock-in 40 hours. (I work for an awesome and understanding library system.)

The last two weeks I have scheduled several really fun programs. I planned them with the thought that I will get to host several of the programs on my work nights, days, and weekends. There was a part of me that was super excited, but another part of me was super sad.

There is a real possibility that the remission could be short lived. The type of cancer I have could mean a quick progression at any given moment.

Pancreatic cancer is known to be aggressive and debilitating.

I’m just a little sad at the thought of not hosting some awesome programs, but I’m really disappointed that cancer makes me feel the emptiness of missing future fun.

Cancer really sucks.

 

A New Crown

If you’ve been following my progress you may remember a post about my tooth issues. A fifteen year old crown popped off and I wasn’t sure if I should replace it due to my short life expectancy.

Well, when I was told that I was in partial remission, two oncologists told me to replace my crown. Dr. G said, “There are people who live a long time with cancer.” If a new crown will enhance my quality of life then I should get the crown.

Dr. M said basically the same thing but added, “You do not have a time schedule.”

Honestly, because the crown popped off two more time, I was down to four choices. I could do nothing and learn to chew on one side of my mouth. I could revisit the dentist every two weeks—the amount of time between each crown loss. I could have the tooth pulled. Or I could get a new crown.

My husband would not let me be uncomfortable so doing nothing was not an option. The dentist told me he would not keep recementing my crown so I needed to choose another option.

Well, the dentist said I would need to see an oral surgeon to remove the tooth. That would require collaboration between my oncologist and the dentist. They would need to come up with a time schedule and check to ensure no drug reactions between my chemo and dental meds. It would also be more expensive than a crown.

So today I went in and recierecmy new crown.

Wow wee—my gums were tender. The chemo causes mouth sores, and although I do not have any I do have intense sensitivy. My poor gums bled and ached. The dental hygienist and dentist we’re super gentle, but they could only do so much when dealing with chemo gums.

Thankfully, I have a very kind dental team. They apologized, took extra time, and offered to numb me. I appreciated their tender loving care.

Today I have a new crown.

I am Maggz on Morphine and

I am young.

I am healthy.

I have the best chance of beating the average.

I’m still living my life despite cancer.