Unexpected Life Lessons

Sometimes life emotionally draws you into places you’d never go willingly if fate had not intervened . Cancer is the tour guide to those places.

When Mom was diagnosed with pancreatic cancer it was tough to know if we should share the news.  How would our friends react?

We also had to find new ways to cope on a daily basis. I’m pretty sure that this part is an ever-evolving process, but it’s not all bad.

It’s been a couple months now and this is what I’ve gleaned from the bombshell of cancer.

Some people can take it and some can’t get away fast enough.

Hearing your friend has cancer is hard. It’s scary in a way that becomes scarier the more you sit with the knowledge of it. It also touches on your own sense of mortality. Makes you think about your own demise and how close your own expiration date may be on the invisible timeline.

Mom and I have both had friends who have embraced us, and stayed in contact since her diagnosis. We’ve also had friends who virtually disappeared upon sharing this news. It was as if they needed to immediately coat themselves in emotion-resistant Teflon to avoid the inevitable.

I get it. I really do. Do I like it? Hell no!  I want to say:  “Man up! Damn it, this could be you.”

Compassion. Kindness. Understanding.

Sharing them doesn’t cost a dime.  However choosing not to share them may cost you far more than a friendship in the end.

Think about it.  “What would you want your friends and family to do if YOU had cancer?”

Gallows humor isn’t something everyone understands or appreciates.

As a nurse, Mom used it. As a cop, I used it. And even before that, my family used it because we’re just warped enough to see the humor in even the darkest of situations.

Gallows humor is a coping mechanism we are very familiar with and it works well to deflect momentary pain when you have cancer, or are in fear losing someone you love to the disease.

We’re using it a lot more lately.

Unfortunately, it isn’t understood or appreciated by everyone. We’re supposed to be happy and look for things that uplift our spirits. Dig for the pony no matter what! Sometimes the shovel we use to dig is our own and sometimes it’s borrowed, but it’s nearly always helpful.

I may be wrong, but irony can work wonders under the right circumstances too. 

There is sweetness when you let go of selfishness.

Mom and I are the best of friends. That evolved over the past 25 years or so. We’ve shared the greatest of life’s triumphs and the deepest of its sorrow – together.

That’s the beauty of being given the gift of such an incredible relationship. We have grown together through the good and the bad. I’ve found myself doing things for Mom because she’s the one who needs it. I’m lucky enough to have a husband and a daughter who support my efforts, and prop me up when I need it.

‘Giving’ of myself is the one gift I can offer that I know is always appreciated and is never too expensive.  Whether it is cleaning her house or just spending time chatting about nothing in particular, the time together that I send with my mother is never wasted and will always be dear to me.

Cancer isn’t all bad. It creates a microscope under which you see yourself, perhaps most clearly for the first time. “Don’t look away. You might just miss the lesson of a lifetime.”

 

 

 

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Operation Ganja For Grammy

Question:What do you get as a Mother’s Day gift if your mother has pancreatic cancer?

Answer: A 5 gram weed sampler; Fruity Chronic Juice, Lemon Thai Kush, CBD GOD, Blueberry X, and Shark Shock, along with a pretty blue glass pipe and a box to keep it in.

I’ve never smoked pot in my life.

I guess you could say I’m a bit of an anomaly in this way. Even with the legalization of recreational use of weed in Oregon as of July 2015, I’ve just not been one to rush out and give it a go.  It’s a choice that I’ve made up to this point in my life and contrary to what some might believe, I really try to have no judgement towards those who chose to partake. 

Despite this lack of use I’ve always said that if I had cancer and weed helped to give me back some normalcy in my life –  like eating lunch and getting a good night’s sleep – I’d do it.  

So that brings me to 1pm Earth Day 2016A field trip to the local pot shops, er… medical marijuana dispensaries, with my daughter in tow.

Still too young to go into the ’21 To Enter’ establishments, she documented the event via Snapchat to her friends. 

Operation Ganja for Grammy was under weigh. 

How It Works

Entering the shop is sort of like going to the dentist. It’s tidy and business-like, with good lighting and friendly receptionists. The difference is that at the dentist’s office you’ll never get a whiff of a skunk or flat beer.

That is the scent combination that comes to mind when I smell pot.

The receptionist greets you and asks how they can help, but in all honesty I got the definite feeling they are scoping you out.

Once they’ve determined you’re not going to try and rob them, they ask for your ID.

They scan the barcode on your state-issued ID, effectively putting your info into their system which is undoubtedly monitored by the state. I really didn’t like that very much, but I’m sure it’s a matter of tracking the products sold more than setting up a plan to never let you vote as a Republican.

After your ID is scanned someone from the back comes out to take you to the room where the products are dispensed.

None of the weed is visible from the reception area. All the business – the handing out of the pot and the taking of money, is done in the back. In both of the shops I visited today this was the case, and for me it was the most illicit-feeling part of the whole experience.

Once you’ve asked your questions and purchased your product, you go back through the reception area.

Except for the label that says “THC content…” on the bottle, it looks like you might have just purchased aspirin.

But for the scent… 

10 Things I Learned Today

  1. Leafly is a great resource for learning more about the specific strains of marijuana. I read up a bit on the site prior to entering the dispensaries and felt like it helped me to ask for what I wanted when I got there.
  2. Marijuana is big business with a huge revenue going to the state. There’s a 25% state tax on it in Oregon. A $30 sale (3 grams) cost me $37.50 and they appreciate you having exact change or leaving a tip. receipt
  3. Some weed has little or no THC content. New hybrid strains are less about the ‘high’ and more about giving users pain relief with mild sedation. This lack of THC tends to also be good for users who tend to get paranoid when using weed high in THC.
  4. You have to have a Medical Marijuana card to gain access to oil-infused products such as edibles. I couldn’t buy a brownie, but I could buy a bud. Go figure.
  5. As of April 1st, 2016 new patients must have a designated ‘grower or caregiver‘ and pay a $200 fee.  The rules for new patient applications in Oregon are outlined here.
  6. If you know someone with a medical marijuana card, they can buy edibles, tinctures, oils, etc… for you and it’s not against the law. So grab a buddy, buy ’em a brownie and save yourself $200!
  7. Each of the different kinds of weed have different scents. Some made me want to vomit. Others were more like a walk through the forest. After awhile it all gave me a headache and no munchies.
  8. Herbalists dealing in marijuana can’t definitively direct you to specific products for the treatment of ailments, but they can give you an idea of what might work based upon the strain of marijuana.  No one seems to know excactly which strains will work the best for individuals seeking relief from nausea, pain or other side effects of chemotherapy, but they can guide you towards weed that might help. There’s a lot of trial and error involved in this inexact science. Truly, not unlike traditional “practice” of medicine.
  9. Not all shops are created equal. The first one had blacked out windows with a stoner-type looking up info on Facebook to tell me which strain would be most effective. The second place was well lit with well informed staff who didn’t need to check social media to answer questions.  If this works for Mom, I’ll be going back to  Breeze Botanicals.
  10. The stigma associated with buying weed is much easier to get over than the helpless feeling of watching someone you love in pain.

 

 

 

 

 

 

Creating Connections In Treatment

The chemo room is semi-circular and filled with forest green recliners; each with its own individual TV set and flanked by two padded, stack-able chairs. In the center of the room is a serve-yourself snack bar of sorts for patients. Coffee, tea, juice, water, crackers and lollipops (Dum-Dums of every flavor).

Patients are encouraged to bring their own snacks. Mom had packed us string cheese, Cuties (the small oranges or tangerines… I’m not sure which) already peeled, Wheat Thins (her favorite cracker), salted peanuts, root beer and a lemonade flavored Cascade Ice drink. I was certain this was unnecessary, however after the first hour it became apparent that the saying “Mother knows best” is accurate.

Our nurse today was Lara. A former traveling nurse, she is a new hire at the Oncology group. A really nice gal, but after three unsuccessful attempts to access Mom’s portacath she found someone else to do it.

We hope she hones her skills in this area over the next week.

Once the drugs were going in we chatted a bit.  Mom asked me: “What things of mine do you want?”  I loathe this question and I find it very tough to answer. Both due to the timing of it, and the reason its asked at all.

Her question is met with one of my own: “How can I answer that? Wouldn’t you rather talk about renting a house on the beach?” I’m deflecting, and momentarily, it seems to work.

We batted that one around a bit more and I lied and told her I’d make a list.

A grocery list, a to-do list… some kind of list, I thought to myself. But not a list of the stuff I’m going to take for myself when you die. There’s nothing I want except more time with you. 

The room was fairly quiet today, with only about a half a dozen patients getting infusions of chemotherapy while we were there.

One patient had been abruptly disconnected from her treatment at what seemed to be the mid-way point and removed from the area by her husband and daughter. It was a weird scenario that we tried to put a story to as we watched it unfold.

It wasn’t clear if treatment had been stopped due to an issue with insurance (our guess) or at the request of the doctor or the request of the patient. The patient’s husband seemed upset and tried to unhook the drugs from his wife, but was quickly stopped. The husband and daughter  left with a bunch of papers in hand, and a very frail cancer patient; a wife and mother, between them.

As we pondered that scenario another woman – about my age – very thin with long gray, blonde hair, came in alone. Mom immediately noticed she was tearful, and asked her nurse several times what was going on with her.

After trying to ignore the question the nurse said, “She’s having a hard day.”

Patient privacy issues are undoubtedly tough to maintain in the chemo room, but I’ve noticed the entire staff do their best with pat answers meant to cool the mark when asked these sorts of questions.

The woman was seated to our left with one station between us. Mom had shared a glance and a smile with her a couple of times, so when her infusion finished and she was about to leave Mom called her over. She introduced herself and we learned the woman’s name was Kristin.

Kristin had been diagnosed with breast cancer and had tried to cure it with a light dose of chemotherapy combined with other naturopathic therapies. She had thought it was cured, but then it came back.  Today she had completed a cycle of chemotherapy and soon she would soon begin radiation treatment.

It was obvious she was sad and scared, but as she knelt in front of Mom holding her hand a visible calm came over her. She started to smile, and when she learned of Mom’s diagnosis you could see surprise and then confusion pass over her face.

“But you look so good!” she said.

They all say that…

Engaging with another cancer patient – a stranger with a diagnosis perhaps more dire than her own – seemed to save Kristin in that moment.  She didn’t feel alone.

Before leaving us Kristin commented how nice it was to see us together, as had the nurse when we came in.

Looking around the room at the patients still receiving treatment, it was apparent that for some of them the awfulness of cancer was nothing compared to the pain of being alone in the treatment of the disease.

As we left Mom’s second chemo treatment I felt a collective connection to an intangible force present in that room.  It left me with the need to remain present each time I’m there despite the pain, and no matter what the outcome.

 

Chemo Round 1: Complete

Last Monday was Mom’s first-ever chemo treatment. She was most afraid that the big bore needle used to access the portacath would be a major pain to get in, but truly, that was the easiest part of this past week.

The chemotherapy treatment lasted about two hours. Patients can bring snacks, watch TV; they have individual TVs hooked up to cable with headphone jacks, or snooze in their recliners while the chemicals are delivered to their systems.

Chemo drugs are mixed in a special room where the techs wear full body protection. Patients have their own bathrooms, and non-patients are asked to use other restrooms away from the chemo area – for their own protection.

Caregivers are reminded to wear gloves while handling bodily fluids or cleaning the patient’s bathroom.  Patients are reminded to flush twice, if sharing a bathroom.

The bottom line… This stuff is toxic! 

Feeling Good, Until You’re Not

Something that became very clear out of the gate is that cancer is damn sneaky. You can wander around not knowing you have it, and even when you do know, you can feel just fine.

Chemotherapy is designed to kill cancer cells, but in order to do that it also effects the healthy ones causing side effects.

For Mom those didn’t show up until Wednesday afternoon. Joint pain that was much more severe than she’d ever felt before was the primary one, in addition to pain around her midsection with mild nausea.

After going to a meeting Wednesday evening she took 5mg of oxycodone which apparently was not a good choice. Lack of food and hydration contributed to a general intolerance to the drug.  Within about 10 minutes of taking it she was in a stupor.

I had been attending a high school thing 40 miles away and called in for my nightly chat with her. I could tell something was wrong as her lack of response on the phone was immediate and just kept getting worse. I asked her to hang up and then I called her husband’s cell.  He was in the other room and went to check on her. She was having problems getting out of her clothes and not making sense.

At 11pm I made it to her house with a bag packed to stay the night. I slept on the floor of her room and listened to her moan and thrash until about 5am.

I got her up to go to the bathroom, gave her some regular Tylenol and put her back to bed. In talking with her she seemed much more aware of her surroundings and me. She slept soundly until about 9am, and then got up for the day.

In talking with her about the night before she had no recollection of it other than to say she remembered trying to talk with me on the phone, but struggling to do so.

No more oxy for that girl!

Thursday was a painful, tiring day.  Mom reluctantly rested, but seemed much more comfortable taking Tylenol than a heavy painkiller.  Unfortunately she had developed an itchy rash and a headache.

Doctor’s Advice

On Friday we saw Dr. Savage after a blood draw. This will be the routine for the foreseeable future.  Monday = chemo for treatment. Friday = doctor for re-assessment.

The good news: blood count numbers are just where they want them at this point; 1200 or so.  The MRI done the same day as Mom’s first chemo treatment shows one pancreatic tumor (3.3 cm) in the tail of the pancreas. This is the same as it was in January when it was discovered, and it appears to be alone with no lymph node involvement or metastasis. Chemo seems to have been well tolerated and will continue.

The bad news: itchy rash on chest and back, extreme fatigue and mild nausea with pain in a band around Mom’s chest and abdomen.

The rash is a tough one. Side effects from chemo? Allergic reaction to Tylenol? Shingles? All possible, but not clear which one is the culprit.  Dropping Tylenol and praying it’s not shingles.

Next…

A pep talk about self-care for comfort and management of side effects is key to surviving the whole chemotherapy thing.

Must do’s include…

  • Rest a lot. And then rest more.
  • Drink as much water as you can tolerate. And then drink more. 
  • Eat whatever tastes good to you, and do it frequently.  Gotta keep the weight on if you can!
  • Take medicines proactively – before things like pain and nausea take over. Anti-anxiety meds, nausea meds, and pain meds are all encouraged. 

Fatigue is expected, but since chemo is on Mondays it’s a bit easier to plan the rest of the week for some fun with friends on the weekend. Managing side effects will be key, but at least for now, that seems possible.

When we left the doctor’s office to go have lunch and pick-up some steroids to jump start the new meds, I think we felt hopeful.

Optimistic about future treatments used to manage the growth and spread of Mom’s cancer, and looking forward to days that were less about the drama of it all and more about the living with it.

Question Of The Week:

“I want to visit or call, but I don’t know what’s a best time. Can you give me some guidelines or let me know what I could bring if I visit?”

This question comes up a lot and frankly, it’s a tough one to answer.

My suggestions are as follows…

  1. Always call first to see if she’s up for a visit or a chat.  If she seems tired on the phone, she is likely to be too tired for a visit.
  2. If you want to bring food, ask her if it’s OK and don’t push it if she says ‘no thank you’.  So many things don’t taste or smell good while she’s on chemo, so please don’t take it personally if she politely refuses your offer.
  3. If you visit, make it a short one of about 30 minutes. This will vary of course, but it’s a good guideline. Stamina is in short supply right now.
  4. Don’t call before 9am.  If she’s lucky, she’ll sleep in a bit with anti-nausea meds on board.
  5. Don’t call between 2 and 4pm as she’s generally napping at that time. This is a guideline. Just know that a post-lunch, pre-dinner nap is ‘the usual’ right now.
  6. Don’t call after 8pm. Bedtime is just getting earlier and earlier, and restorative rest is what needs to happen.
  7. You can text, but she’s still learning how to respond to them. We’re working on it!
  8. Emails are always welcome, but she may not see them for a day or two if she’s feeling the ‘ugh’ of treatment.
  9. Wendy’s chocolate frosty is a favorite. A small one goes well with a visit.
  10. These are not rules, they are only suggestions and with time, may change.

Getting calls, visits and messages via Facebook or cards in the mail all help keep Mom’s spirits up during this tough time.

We all appreciate your love, friendship and prayers more than you know, and feel very blessed to have you all in our lives.

Thank you SO much! 

 

 

 

Chemotherapy Plan Is Set

Monday begins a planned 16 week chemotherapy marathon designed to press the pause button on the cancer in Mom’s body.  I say ‘in Mom’s body’ because cancer is likely hiding elsewhere (in addition to her pancreas) even though we can’t yet see it on scans.

She will also have a MRI of her pancreas later that day.  The last one was done back in January and no chemotherapy has been done due to her lung wedge resection surgery to remove her lung cancer in prep for surgery on the pancreas, which is no longer an option.

The CA-119 test is the primary way the oncologist is able to see if the chemotherapy is working. Tumor markers are given a numeric value and the higher the number, the more cancer is present.

Right now Mom’s numbers are over 17,000.  A person who does not have cancer in their body would have numbers ranging from 0 to 34.  The CA-119 will be frequently used to monitor Mom’s ‘count’, as it is with all types of cancer patients.  (If you’d like to learn more about the test as it relates to pancreatic cancer, click here.)

There will be a combination of two drugs that will be used to hopefully stall the growth of cancer in Mom’s body.  One of those drugs will likely make her hair fall out, but we’ve come to find out that not all chemotherapy does that.

Interesting I thought.

Chemo will be on Mondays with labs each done each time.  Then see Dr. Savage on Fridays, with scans as needed.

The whole goal of this treatment plan is to extend and enhance Mom’s quality of life while living with this disease.

Mom has had an ongoing issue with lymphedema in her legs since she fractured her hip over a year and a half ago.  Dr. Savage said the chemo might actually help that problem. (Something we both found humorous as NOTHING has helped it for over a year!)

During our visit we asked a few questions, but the one that sticks out most for me was when Mom asked:  “Is there a special diet I should follow? Anything I shouldn’t eat because I’m on Coumadin?”

Dr.Savage smiled and said “Eat anything that tastes good to you is OK to eat. You have cancer and it trumps everything else.”  I liked her immediately.

We ended up going to Safeway after our meeting with Dr. Savage.

We first went to the pharmacy and picked up some numbing cream to go over the portacath site. Mom will smear that over the site and cover it with Saran Wrap an hour before she has chemo.  The needle used for infusion is a big one, and even with a portacath it can be painful to get it in.  This should help.

We also picked up some anti-nausea meds. They’ll give her some prior to each infusion, but she needed some to keep on hand at home too.

Then a tour of the store to look for snack items.

You’re encouraged to bring snacks to chemo, but nothing with a strong odor. Burgers and fries are no bueno in the infusion room!

We found the chocolate bunnies were 75% Off – leftovers from Easter.  Mom bought 4 and tucked two in my purse as I left to go home.

This weekend we are both dealing with our own stuff.  Much of it is very challenging right now, even without cancer or cancer treatment being a part of it. I keep telling myself – it’s life.

Crazy as it is, I’m so grateful we’re still in it together. Plodding along eating chocolate and bitching about crappy drivers as we make our way home. 

 

Getting Schooled On Chemotherapy

It took Jasmine the nurse educator, 53 minutes to explain the side effects of the specific chemotherapy drugs which her doctor has ordered to be used in Mom’s upcoming chemotherapy sessions,  and yet it took me all day to process it.

As I looked around the chemo room with about 50 beds in it my mind was blown! It’s crazy to think that each cancer patient in the world who receives chemotherapy has an individual program with specific drug combinations designed to slow, shrink or kill a specific type of cancer in that person’s body – without killing everything else in the process.

It’s A Dance

I like to simplify things. Break down concepts to share them in the easiest possible way without being condescending. Drawing a comparison to everyday things, for me the process of chemotherapy seems a lot like a dance.  

I’d call it the ‘Chemo Cha-Cha’. 

  • First, you pick a partner you trust.  Presumably, your oncologist. Mom will see Dr. Savage again tomorrow after a visit to the lab. She’s been her patient for about 15 years. The first time she saw Dr. Savage it was for a problem with her red blood cells never quite maturing, and thus she was very anemic. Dr. Savage never did figure out what it was that caused it, but she figured out what it wasn’t and gave her drugs that eventually reversed and eliminated the problem.
  • Then the music starts.  The chemo drugs are chosen by your oncologist and administered to attack your specific cancer.  The chemotherapy is designed to be administered through a portacath for a protracted period of time; in Mom’s case – about two hours per chemo session every Monday. Three weeks on and one week off for 16 weeks with lab work and MRI imaging as ordered by the doctor.
  • The dance has a predictable rhythm to it, but there can be some change-ups. Like when the first drug they try doesn’t have the desired effect and they try out another one.
  • Eventually it’s time to stop dancing.  Like when the cancer is in remission and you get to stop chemo, or… when it’s just not working.

Mom dances beautifully and has never shown fear of losing step, even when she’s learning a new dance.

Something tells me this dance will be no different. 

 

 

 

 

 

 

 

 

Portacath Placement Complete

Since the decision was made not to operate to remove the tumor in Mom’s pancreas, we’re moving on to Plan B: chemotherapy.  In prep for that chemically induced cha-cha a portacath was placed by Dr. Faught; our family’s favorite surgeon and an all around good guy, yesterday afternoon.

The Surgery Center of Southern Oregon was where we took Mom bright an early to get this deal done, however when we arrived and got her all dressed down for action, there was a question that halted progress.

Did you take your coumadin this morning?

Unfortunately, ‘yes’ was the answer.

Coumadin is a blood thinner Mom takes due to the previous blood clots in her legs and pulmonary embolism that resulted after her hip fracture and surgery. We’d been tot he coumadin clinic the day before and were told not to stop it, even though they knew she’d be having the portacath placed the next day.

A blood test to check the clotting factor of her blood was done and the results gave the medical team pause.  Dr. Faught ordered another test that would take about 1 hour to get the results. Mom was shifted in the line-up and another case took her slot while we waited for the blood test results.

About an hour passed and then Dr. Faught came in to tell her that the lab indicated they didn’t have enough blood for a test. He made the call to go ahead.

The surgery itself took about thirty minutes and a titanium portacath was placed under the skin near her clavicle. An incision had been made on her neck as well.

When I was called back to see her she was sitting up drinking some apple juice. A little bit stoned, but really no worse for wear. She said the site was very sore however it didn’t seem to be bruised which was a good sign as with the coumadin just rubbing her skin can sometimes cause discoloration.

The nurse that discharged her showed us how to setup some leg pumps that would go home with us.  This was to prevent blood clots in her legs. She also got Mom another pain pill and helped me load her into the car.

Once at home we wobbled our way down the hall to her room.

She slept pretty well with a little pain medication and this morning when I called her she was looking forward to going to lunch with her girlfriends to celebrate her dear friend Mary’s birthday. (“Happy Birthday Mary!” We love you.”)

Today is a day off.

Mom is out with her friends and I’m catching up on errands, appointments and paperwork. Tomorrow we will go to Chemotherapy Education class at the Hematology Oncology Associates of Medford  and then on Friday to see her oncologist Dr.Savage.

The following Monday Mom will begin chemotherapy infusion treatments; one 2 hour session each Monday for three weeks is scheduled.  She also has an MRI of her pancreas scheduled to be done after that first treatment and I would expect at some point that will be repeated to see if the chemo is doing anything to the tumor.

Since I always feel better doing something productive I’m going to attempt to get some healthy meals ready for Mom and prepackage them in small portions for easy fueling throughout the day.

It’s hard to know what to focus on, but somehow picking the right fruits seems like a much better mental health choice than the alternatives.