Catching Our Breath

Sitting in the cafeteria of the hospital I’m catching my breath from a manic Monday morn. My daughter’s school bus didn’t show up so amid trying to get my bag repacked for possible overnight stay with Mom, flat ironing my otherwise Bob Dylan-like hair, and stepping over the dogs who were all keeping close eye on Mama, I had to revise my plans to include picking up a prescription, getting gas in my car AND driving 14 miles out of my way to the high school.  

Yup, it’s Monday.

I didn’t get to the hospital until 10am, two hours later than expected. Yesterday Mom had been moved from ICU to the cardiac floor due to overcrowding and a need for ICU beds. 

Her new room has a great view. The same view we enjoyed 18 months ago when she was admitted with a pulmonary embolism. The IDENTICAL view as it’s exactly the same because it is the very same room she was in during the last visit. 

Unbelievable coincidence…

Luckily I caught the surgeon’s PA this morn who told me that she would not be discharging her today. A relief. She’s not maintaining her oxygen levels and her blood pressure is very low.  Physical therapy has her walking with a walker and being evaluated for oxygen at home. All very disappointing to Mom who came in listening to the surgeon who said: “Two days in and out and then you’ll be good to have the second surgery in a week or so.”  

No way that’s happening.

For now it’s rest, receive breathing treatments, get the pain managed, learn the biopsy results, and pray that a turning a corner towards recovery is near. 

Last night I wasn’t optimistic. This morning with some rest and the knowledge that she’s not being shoved out the hospital’s doors too early, I’m at least able to carry on a conversation without weeping just a little.  

Strange observation: Whenever I sit down to relax in the hospital I hear  Rick Astley’s “Never Gonna Give You Up”.   Must be time to pack up and head upstairs once again.  

Tube Comes Out Today

After some discussion this morning and a check by the doctor, it looks like removal of the chest tube is on tap for today. Breathing treatments are helping Mom to get more out of her efforts to expand her lungs, and sitting up in a chair more frequently is letting gravity to.work its magic.

Her blood pressure is finally coming up after receiving IV fluids, which had been a very big issue. Her heart is still working a bit harder than they’d like with a resting rate around 85, but that’s a combination of things – some existing prior to surgery. 

The leg pumps that are on her to prevent blood clots in her legs have made the redness and rash (caused by lymph edema) to go away. Mom has ankles again!  Something that delights us all. 

I brought in donuts this morning and we’ve watched way too much reality TV on Bravo. Mom fell asleep during, but I woke her up to take bites. Prior to coming to the hospital  I drove my sister to the airport and hope to see her with her family here in April.

It’s not yet 11am, but we’re all exhausted. I know we look forward to returning to a bit more routine and Mom being home. The nursing staff in the ICU have been wonderful though, and for that we are grateful.  

No word on the pathology on the chunk taken out of her lung, but I would expect that by Mondy we’ll know if it was metastasis or something else.

ICU Blues

Day 3 in the ICU. Day 1 was a blur and Day 2 just plain sucked. Last night her blood pressure dipping dangerously low and overly medicated for pain – unable to respond to the point we thought she’d had a stroke.

Today is better, but not without challenges.

Blood Pressure Is Too Low

The damn monitor won’t shut up! An alarm sounds whenever the set parameters are breached one direction or the other. It’s been going on for thirty minutes now.  90/46 is her blood pressure and we’ve been informed by the respiratory therapist that the doctor should be coming to check in.  No ETA however.

Sitting up in a chair for the second time today, Mom looks so much more like herself. Her blood pressure is still too low, but maybe a bit of IV fluids will kick things back the other way. Hope it’s that easy.

By contrast to today’s routine events,  last night was scary.

Mom’s blood pressure suddenly spiked and then abruptly dropped. She became verbally unresponsive at the same time.  We thought she’d had a stroke, but then the nurses decided to try to get her up and see if the change in movement. Thankfully an adrenaline hit – courtesy of pain – when we got her up just to stand next to her bed and ultimately seemed to be beneficial.

Future Surgical Possibilities

This surgery is in some ways a trial run. A relatively non-invasive procedure that for most who have it is a one day in the hospital with minimal pain medications needed. Most patients don’t have Mom’s other medical issues though, and it is those that have made her medially fragile and in some ways – a crappy surgical candidate.

In thinking about what happens next it’s easy to assume it should be surgery to remove the tumor in her pancreas. Thing is, that surgery to save her life, might just kill her.

I’m going to be contacting some different sources for possible alternatives to surgical intervention. Admittedly, right now that seems like a scary proposition as surgical removal has been the only sure way to cure pancreatic cancer.

Time to start investigating and getting second and third opinions.

One alternative stands out  Spokane Cyber Knife is one that has helped a friend of my sister’s to survive 18 months past what was expected at stage IV.  Directed radiation to kill tumors, without invasive surgery.

For today… it’s get her blood pressure up and keep it up. Then tomorrow… take out the chest tube. God willing, bring her home next week.

 

Waiting and Wondering

Originally today’s lung wedge resection surgery was scheduled for 8am. Then they moved it to noon. Then they stopped telling us a time and said ‘soon’. 

At 2:45pm the doctor came in and asked: “When are you going to have the OTHER surgery?” Huh?  Mom told him she’d called up to OHSU and they’d said that we needed to wait until after this one to see if the other could even be considered.  Mom then asked Dr.Carmici how long she’d have to recover from today’s surgery before she could have another one.  He said “one to two weeks”.  What?

He left the room and the tech from surgery was right behind him ready to take her up. It was 3pm, and she would be his second surgery of the day.

We left her and went to go get something to eat. That Egg McMuffin had long worn off.  We headed off to get a sandwich and none of us really talked. The weight of the moment was upon us.   

Upon returning we checked the board where all surgery patients are listed by number.  Mom was just leaving anesthesia and not yet ‘in procedure’.  They said ‘2 hours’ for the procedure and then the doctor would be coming out to talk with us.  She’ll come out of recovery with a chest tube and be sent to ICMU (intensive care) for at least one day.  Estimated time to go home 2 to 4 days. 

So now we wait. Coffee, cellphones, magazines, iPads…all distractions, but still not enough to keep me from intermittently tearing up and letting fear catch up with me once more.

5:40pm …

We got called in to talk with the doctor, but then waited 45 minutes and didn’t see him because he was called into an emergency. Now we are sitting in the ICU waiting room, calling back to the unit every 20 minutes or so hoping to get back to see her. 

I see so many people on their phones, pain in their faces….stories unfolding all around, it’s what I love about life – it goes on no matter what.

Learning About Pancreatic Cancer

YouTube is an incredible resource for information of all kinds, including information on pancreatic cancer. Here is a short video explaining how a pancreatic tumor affects the process of digestion, and produces symptoms that could be related to a whole host of digestive ills.

Symptoms Are Subtle

Back in the 80’s we were out riding ATVs on the Oregon dunes. Mom rolled her ATV and the handlebars hit her squarely in her midsection. She had broken ribs and had caused trauma to her internal organs, including the pancreas.

Inflammation of the pancreas became a chronic problem and a benign cyst was removed from the organ a few years later. Inflammation continued in that area and that is what doctors now thing led to her cancer.

Symptoms of back and midsection pain had become so frequent that they were often ignored. Waiting for symptoms to pass on their own in a few days was the norm, as was the nausea that sometimes accompanied the pain. Constant fatigue had also become normal over the course of years due to many other health issues, thus ignored when it became more frequent.

Something that we’ve learned is also a clue to pancreatic cancer is blood clots.  Mom had blood clots following her hip fracture and subsequent surgery, but no one connected it to her cancer until it was diagnosed.

Yesterday my sister saw Mom for the first time in over a year. She said “…you don’t look sick.” That’s true. She doesn’t look sick, and that’s the tough part about pancreatic cancer. By the time you look sick, you’re at Stage IV and they can’t help you.

Not A Bad Day

Mom has seen an oncologist for a few years now. Lumps in her breasts that required biopsies, lumpectomies and follow-up for ductal carcinoma in situ, but these never required chemotherapy, radiation or mastectomies. The follow-up appointments with Dr. Savage were simply part of the routine each year, but certainly nothing to fear.

Today was different. More tense and uncertain. I tried to keep the mood light despite being surrounded by chemo treatment stations, and once in an exam room we bounced from topic to topic until the doctor came in.

Step 3: Making A Plan

Dr. Savage’s goal for this first visit regarding the diagnosis of pancreatic cancer was to get the lay of the land and discuss the events of the last few weeks, covering findings from the first CT of her chest to the plans for the surgery next Thursday to remove the spot in her lung.

After going through the chronological order of things, and reminding Mom that it was purely coincidental that they even found the mass in the pancreas, Dr.Savage had some positive things to say about Mom’s diagnosis and what comes next.

  1. Metastatic cancer of the pancreas does not usually go to the lungs, it usually shows up in the lymph nodes, liver and spleen. So far, none of those things have been visualized with any procedure or test.
  2. Assuming the very small spot in the lung is not metastatic, but is instead either benign or lung cancer, the removal of the spot via surgery will make it a ‘non-issue’ with no further treatment to the lungs needed. Really, really hoping for non-metastatic.
  3. If the lung surgery goes as hoped,  then talking to Dr. Billingsly at OSHU about the removal of the tumor in the pancreas will be next. Removal of the tumor may not require a Whipple procedure as the tumor is near the tail of the pancreas – not the usual place it shows up in pancreatic cancer patients.
  4. If the lung surgery goes well, and the pancreatic tumor removal can be successfully done, being cancer-free without the need for chemo or radiation follow-up is a real possibility despite a nasty diagnosis.  I think we just found that pony’s tail and now we’ve just got to hang on! 

The only cure for Mom’s pancreatic cancer is the surgical removal of the tumor in her pancreas, with the continued lack of lymph node involvement and no metastasizes elsewhere in her body.

If the spot in her lung is metastatic, that changes the game and thus ‘the plan’. But for now we’ll hope and pray the spot is just a spot, and get ready for surgery next week.

Navigating The New Normal

A cancer diagnosis is different for everyone, but it impacts us all in many of the same ways leaving us disoriented and confused in a mental fog made of fear.

Whether you are the patient or their support system thoughts of cancer tumble through your mind from the moment you open your eyes in the morning until you close them at night. These thoughts orchestrate your dreams, and wake you in the middle of them only to torment you some more.

And then there are the questions from others…

  • How are you feeling?
  • Do you know anything more?
  • Are you afraid?
  • Do you have a will?
  • Have the doctors told you what to expect?
  • Chemo…radiation…surgery or all of them?
  • Are you going to lose your hair?
  • How is the family taking it?

Step 2: Educating The Troops

While talking with Mom last night we both agreed that one of the toughest parts of a cancer diagnosis is how hard it is to share the news with family and friends.  We’re quickly finding out it’s equally hard to see the look of fear on their faces, hear them cry over the phone and know that the avoidance of contact by some is simply their inability to weather the roller coaster of emotions we’re riding every day.

Living With Cancer

The thing that we have to all remember is that living with cancer is not the same as dying with it. Living with cancer means that you add to your daily routine more medical-related stuff, but life goes on. The house still needs cleaning, the bills still need to be paid, etc… but you have one more big thing that is always on your list – keep going and kick this thing!

I think it’s important to remember that we are all dying of something with an expiration date stamped in invisible ink somewhere on our bodies. Cancer patients just happen to have a clue as to the likelihood of their end date.

These are my tips for relating to someone I’ve known for 48 years…most of all keep it real.

It’s OK to ask how she’s doing, but don’t forget to tell her about you and yours too. Distraction is a good thing! A funny or uplifting story is always appreciated.

Don’t feel like you have to ask about the cancer every time you talk with her. We all know it’s there, and if you call, she knows you’re thinking of her.  It really is enough. She knows that the blog is keeping you up to date and that’s helpful because she knows you’re reading it which allows her not to go over things again and again.

If you’re going to take her on an outing, remember she tires easily so keep it short. It’s a lot of fun to get out of the house and visit, but stamina is not her strong suit right now.  Short visits allow for more of them throughout the week too.

Feeling sad is part of it, but try not to express that sadness to her so much that she feels she needs to comfort you.  That’s exhausting and while you will end up feeling better (she’s really good at comforting others…) it leaves her feeling even more depressed about the circumstances she finds herself in.

Helpful Insights for Caregivers, Family and Friends

“If people could understand how emotionally vulnerable we are when we first are diagnosed and in treatment it, it might help how we all interact and communicate. During that time, I mostly appreciated closeness, warmth, encouragement, and companionship. I didn’t need sympathy, war stories, or to hear “how brave” I was.” – Anonymous 

Don’t get me wrong – love, support and friendship are essential.  It’s the delivery of that good stuff that sometimes gets overwhelming to receive as much as it is to give.

To help us all I found some articles that list things that people with cancer want you to know and some that offer tips for how friends can help. 

I personally found many suggestions in these articles very helpful and I hope you will too.