CEA Blood Test Results

The email had come in from the doctor’s office had updated her file. Mom had tried to click the link in the email, but as with most links in Outlook since upgrading to Windows 10 – it wouldn’t open.

I took a few minutes to search Google for an answer, typing in ‘How to open email links in Windows 10’ into the search bar. Changing the file association for Outlook to a browser other than Internet Explorer did the trick.

Back to the email and opening the link to the My Chart portal on Asante’s website.

“Do you have your username and password?”

Shit.  

Roadblock number two, but thankfully resolved with a note from the doctor’s office found on her desk.

Once in the system I found notes going back a couple of years.

“Want me to delete these old notes?”

We both wanted to delay the inevitable at this point. 

Notes deleted I opened the ‘Test Results’ message.

The CEA Test

When they think you might have cancer they do blood tests. For specific cancers: breast, colon, pancreatic and others, the CEA blood test is often used, although it’s not always present with some pancreatic tumors and thus is not considered a definitive test as much as one of many diagnostic tests to help monitor cancer’s growth.

Unfortunately where pancreatic cancer is concerned, there are no ‘definitive’ tests for diagnosing it early. Thus most patients who have it are in the later stages of the disease with a poor prognosis.

According to Healthline

A CEA test is most useful if you’ve been diagnosed with a type of cancer that’s known to produce CEA. Not all cancers produce CEA. Increased levels of CEA may be found in the following cancers:

  • colorectal or colon cancer
  • medullary thyroid carcinoma
  • breast cancer
  • cancer of the gastrointestinal tract
  • liver cancer
  • lung cancer
  • ovarian cancer
  • pancreatic cancer
  • prostate cancer

A good number – within ‘normal’ ranges – is 0 to 3 or 5 (depending on what lab it used and their protocols, and whether the patient is a smoker or non-smoker).

The lab used for Mom’s test said 0-3 was in the normal range. Her number was 5.2 for this first test. (*Some pancreatic cancer patients have numbers above 1,000!)

I could see the disappointment in her face.

I found myself saying: “It’s not going to be zero. You have cancer, but look at how low it is.  That’s GOOD news!”

Another test, the CA19-9 was probably done too. In combination, this helps doctors to stage pancreatic cancer, adding to the diagnostic tests that guide further treatment of the disease.

What Comes Next

This week Mom is scheduled for a pulmonary test on Wednesday morning. This is used to measure her lung health and capacity.

Thursday afternoon we meet with the gastro specialist to discuss recent test results and the pending biopsy of her pancreas. It’s still not clear if that will be done in a surgical center or the hospital, but I guess we’ll find out that day.

Then a busy weekend with friends, attending Mom’s church crab feed.  This year it’s more of a help taking tickets and be social thing as her appetite is waning due to nausea right now. Despite this it’s always fun to see friends and occupy our minds with other things. Things that don’t include a cancer diagnosis. An event we both look forward to attending together each year, which takes on special significance for me THIS year.

The following Monday will be the biopsy of her pancreas.

That day feels like a lifetime away right now as time seems to have elongated. I find I have to remind myself to think about other things. To look up at the sky when the clouds break and enjoy the sunshine – even if for only a moment.

It feels like we’re walking into a long, dark tunnel.

I guess that just means it’s time to say our prayers, and clasp hands. Knowing we’ll be carried along the path even when we can’t see it.

 

FAITH VS_ FEAR

How Cancer Grows

That’s of course the million dollar question. And from its answer there is a solution to the disease in all its forms which for now is still just out of reach.

The health news story on the New York Times homepage this morning: A Single Cell Shines New Light On How Cancers Develop caught my eye this morning because it mentioned melanoma.

This past year my daughter had a spot on the bottom of her foot that looked like a freckle turn into a large black mole in a matter of months. Fortunately she found it when it was in its pre-melanoma state, and it was surgically removed. It was really crazy because she never goes out in the sun, and it was on the sole of her foot.

Now she has been warned that she’s probably going to be at risk for melanoma throughout her life, and to check herself for spots on a regular basis. (Not something I wanted the kid with OCD to hear, but hey, I know she’ll be diligent in the effort and never go out without sunscreen. Our trip to Hawaii is off however.)

Also this past year my husband had a small spot on his temple turn into what looked like a .38 caliber hole in the side of his head in the matter of months. It turned out to be squamous cell skin cancer. It too was surgically removed.  This was due to years of sun exposure, but left untreated it could have been just as dangerous as melanoma.

So what’s the lesson here? 

Pay attention to your body. No, you’ll not always catch cancer when it starts, but in theory, sometimes it’s possible.

In looking back over the past nine months or so there have been things that while taken alone seem to be symptomatic of other things with regards to Mom.

Itchy skin, nausea, a rash on her legs, blood clots, dark urine… all things she noticed, but all things we could write off to the handfuls of medication for other things and the stress of trying to have a week without going to medical appointments, picking up a prescription and/or getting her blood tested.

Some of those things were going on 18 months ago when she had her accident and fractured her hip. When the spot in her lung was biopsied and found to be benign.

As awful as it is, I feel like we’ve been lucky in at least two ways with her cancer diagnosis.

First, she’s got a great care team that went the extra mile and did the PET scan when things just didn’t seem right.  Second, most people with pancreatic cancer get their diagnosis when it’s gone all through their body. The PET shows the pancreas and the spot in her lung lighting up.

I am an optimist, who doesn’t mind being the underdog.  I’m also a warrior who doesn’t run away from a fight – seen or unseen.

I think Mom is too, no matter how her cancer grows.  

 

 

Moving Forward

Yesterday I shared Mom’s diagnosis with our friends via email, phone calls, text and social media.

I felt kind of sick afterwards. Knowing that the news of her diagnosis was hitting people we love as a totally unexpected, painful reality hit that would leave them reeling with nothing but sadness and more questions.

The Hesitation

Making others feel bad is not my thing.  I’m painfully aware of my people-pleasing nature and despite my best efforts to the contrary, I am consistently true to my nature when it comes to the people I love. Doing this was going to feel bad on a lot of levels, and who likes to feel bad? Not me.

Thank God I have acquired the ability to suck it up and spit it out.

Psychological survival via compartmentalization. I Never leave home without it.

Compartmentalization is something I learned long ago.  It’s a tool that I use to prop myself up when it feels like my legs are about to give way under the pressure of fear.

Just Tell Them

I wanted sharing the news of Mom’s cancer to feel like pulling off a Band-Aid.  Quick and easy. They’d know. I’d feel better. We’d all move on quickly to lighter topics like the latest cat video or life hack.

But in reading the responses to the bomb I’d just dropped on Facebook, I was brought to my knees.  I wailed as though I’d just torn off my own limb. There was such an outpouring of tenderness and love shown by so many, I was overwhelmed.

I cried all day off and on. Coming to grips with ‘this is real’ in a whole new way.

When I finally allowed myself to go to bed I sobbed some more. I couldn’t seem to get rid of it. The deep, gnawing sadness.

I’d gone through two boxes of Kleenex in one day and I was out. No more Kleenex but lots of tears and snot still pouring out of me. My last thought before passing out:  I’d better start drinking Gatorade to get back some electrolytes. (Something my mother would say.)

This morning my head hurts, but my bronchitis seems better. Maybe today is the day I’ll take down the Christmas tree.  I’m feeling optimistic. I might get a shower before noon today.

I already got the kid on the bus to school, updated my iPad, took the dogs out to potty and found myself responding to a few Facebook posts without crying.

The sun is shining too. 

 

 

It’s All About Timing

“I feel like I’m running a marathon” she said. “You are” I replied. And then we both began to cry.

Reading  ‘…worrisome for malignancy’ on the second page of the PET scan report was just one moment in the last 26 days of this whirlwind of diagnosis and staging of her cancer.

The truth is, this race we are running has an uncertain course with an undetermined length. It all feels random and ill planned. It’s also a race that neither of us wants to run, even if we feel like we’ve trained for it about 18 months ago.

When we talked last night – as we do every night – Mom was weepy, scared for what is to come. I tried to offer reassurance, but was ill prepared to do so. I too feel fear, and get mad at myself for being much weaker than I’d like to be for her sake.

Two Calls

Yesterday Mom received two calls to schedule medical appointments.

The first, to setup a blood draw to check cancer staging markers in her blood.

The second, to setup two appointments: a consult with the gastro specialist and to have him do a biopsy of the mass in the pancreas. These appointments will occur a week before seeing a cardiothorasic surgeon about biopsying the spot in her lung, which despite being the thing that got us to this point in time, now almost seems like an afterthought.

Dr. Adam M. Mougey will be doing her biopsy. He is her primary doc’s neighbor.  Her primary doc is married to her oncologist. (No matter what they say, it really is who you know!

Mom had been told by her primary that if the gastro group’s office staff gave her any guff about not being an established patient with Dr. Mougey to have them give him a call.

Much to her surprise there was no fight. Appointments were made with ease in a timely way for next week. A done deal. A relief.

Waiting To Tell

Pancreatic cancer has an ugly prognosis, and it’s not something that you want to share with others who are then left speechless – or worse – babbling optimistic rhetoric that they hope will be just enough to let them escape without bursting into tears in front of you.

When do you tell them? 

Mom has told her children; me and my sister, her husband, her best friends and her church family.  I’ve told my best friends little bits, but have resisted really talking about it until we get all the facts and have a plan. This blog is as close as I can come to ‘talking’ in a thoughtful way about it.

For me, my mother’s cancer diagnosis seems too abstract as of yet. Not quite possible. Despite terrible things happening all around us all the time, we – our family unit -should be like Teflon. These things should simply slide off of us, never penetrating our hard exterior.

You’d never think by the previous statement that I see myself as a realist. OK with what is, and favoring information and facts over hope and prayer.

Despite this I do pray.

I pray a lot. 

 

 

Good News Doesn’t Come On Sunday

The MRI was on Friday night and now on Sunday, the phone rings. It’s Mom’s primary doc, letting her know that there is a 3.3 cm mass in the tail of the pancreas.

“It’s adenocarcinoma… I want you to see a specialist right away” he said.

She had just come home from church and a visit with her minister – a cancer patient himself – where they had prayed together after her dear friend Mary; a fellow church member and nurse, had shared recent events with him.  I guess if she had to be in a ‘good place’ emotionally to hear this news – this was it.

A little while later I called her to let her know I was on my way home. I was driving home after taking my daughter to a college interview and a side trip to urgent care for me to get a prescription for an antibiotic to clear up my current bout with bronchitis.

In our brief conversation I noted hesitation in Mom’s voice. Eventually she asked: “Are you driving or are you stopped?” I didn’t stop. I just continued to drive and listened.

Maybe it’s how crappy I feel with my bronchitis, or maybe it’s my desire not to appear panicked about all this to my daughter, but when I finished talking with my Mom I just felt numb. Unable to react to the information. No tears, nor manic thoughts or frenetic activity. Just way too many unanswered questions and the likelihood of a long journey ahead for all of us.

Shitty news, and yet there’s still school tomorrow.

 

the family

Cancer: It’s In The Family

 

So far, I don’t have cancer.

I had my cervix frozen when pre-cancerous cells were found, and a biopsy on my breast when inflammatory breast cancer was a concern. I have ulcerative colitis; sometimes considered a precursor to colon cancer, and a family tree saturated with death by cancer, but thankfully for the moment I’m cancer free.

I know it’s kind of morbid, but I assume that if I don’t get into a fatal car accident, I’ll die from some form of cancer.  I can’t say it doesn’t scare me, but I’m vigilant in my check-ups and hope that will be enough to catch it early.

Early diagnosis really seems to be key.  It’s what I’m hoping will make the difference for my Mom in the weeks and months to come, and what was lacking when other family members were diagnosed.

My Dad

My Dad had colon cancer. At least that’s where in 1984 they assumed the cancer in his body had originated from before they found it in his liver and bones.

A round guy, he didn’t want to go to the doctor and hear how fat he was, so he didn’t go.

One day  he suddenly went blind in one eye – a retina detachment – which sent him to OHSU for treatment. They did tests and found that he was very anemic and when they sought out the cause, they found his cancer.

In researching my family tree I’ve found that Dad’s mother died at 51 of what they think was inflammatory breast cancer. His father had died of lung cancer in his 60’s, and his brother died of brain cancer in his 40’s. He knew about cancer and what it meant to have it. He feared it and it was because of his fears, he never came right out and told me he had cancer.

I was 17 and a senior in high school when my Mom broke the news to me. I guess it was just too hard for him to tell his daughter that he was sick and could possibly die. (Now a parent myself, I feel like I understand that choice a bit more than I did back then.)

At the same time Dad was getting treatment; radiation and chemotherapy, to help him live with his disease, my Mom was getting her Whipple procedure done to remove the benign mass on her pancreas. It was an awful time for all of us, but no one talked about pain and fears, we just hid our emotions and cried in private.  

The last time I saw my Dad I visited him in the hospital. He had been on hospice for a few weeks with family and friends visiting him at home. He was jaundice and frail, yet still able to communicate. I don’t remember that meeting as being anything more than a casual good-bye, even though I know we both knew it was much more.

Later that day I went on an overnight trip with my high school choir. On the way back on the bus it was dark, but all of a sudden a light shone through the bus window – very bright and very quick – and then it was gone. I knew my Dad was gone too.

Dad was never able to tell me he had cancer. He told my Mom and she was the one who had to break the news. Mom answered the questions my sister and I had about his disease, and our future without him.

I don’t fault him for not being able to talk about it, but I’m so grateful that not everyone deals with cancer in this way.

My Mom

As the first love of my life awaits test results and wonders what the future holds, we talk about all of it. I’m grateful for that communication, as I thrive on information as much as I crave an emotional connection.

The cancer, the past Whipple with the benign cyst, the possibility of another major surgery, my Dad and what the future may or may not hold for her and for us – are all being discussed. It’s not easy, but it’s really good.  Cancer is in the family, but instead of fracturing the bonds, it is actually strengthening them.

Mom has made the decision not to mention she has cancer to her friends and extended family at this time.  She’s doing it in her own way, a little bit each day.

I see that imitative as a good thing. It’s on her terms – the telling.  Something she still has control over, and something I will support no matter what her prognosis and her decision is regarding treatment.

As I write this I think about those people who will read what I’ve written in the coming weeks and months and be upset that we didn’t tell them about her cancer sooner and ask ‘Why?”  I guess the answer is in that last sentence.  It’s “…her cancer.”

While cancer touches us all, it’s an individual journey. For the cancer patient, for their family and their friends. Each person is reminded of their own mortality, and at the same time given the opportunity for emotional growth and connection that only the threat of permanent loss can impart.

It’s with cancer’s push that the next chapter of our family’s story is written.

MRI ASAP

Again, it’s great to have a team that’s looking out for you. Following the PET scan that showed possible malignancies in the left lung and pancreas, Mom’s doctors pushed to have a MRI of the pancreas scheduled as soon as possible.

Within a day or so of the initial call an MRI was setup with the same outfit who did the PET scan.

The MRI is to be done tomorrow at 7pm. They’re squeezing her in to accommodate the rush order.  A tad telling of their concerns, but also a good thing if early detection and treatment is possible.

The PET report indicated no visualized masses in the pancreas, which I see as a good thing. She’s not symptomatic other than occasional gut pain which she’s had for years off and on.

Historically Benign

In 1984 my Mom had lost a lot of weight. She’d always been thin, but this was 30 pounds in a matter of a month. She was working as a nurse in surgery and after a case she suddenly passed out. Fortunately she did this in front of a bunch of doctors who put her on the table and did an exam.

A softball sized mass was felt on her pancreas. The mass was removed and a Whipple procedure was done. The mass was benign, and thought to have been caused by a blow to her abdomen sustained during an ATV rollover accident about a year before.

It took a long time to heal from that surgery, but what we thought was cancer – was not.  She had to take special enzymes to process her foods and painful adhesion (scarring) had to be removed in later years, but she did amazingly well considering the complexity of the surgery that was done.

Gathering Information

I do best with more information. I understand the need for detective work and research. I use Google like a pro, but know that in the case of medical diagnosis and treatment – Googling can be scarier than watching the scariest of horror films.

I’m trying hard not to let my head take me to dark, scary places. I’ve started obsessing about things I can control like trying to locate scholarships for my college bound daughter and scanning family photos to store on the cloud.

I’m keeping busy, but my Christmas tree is still up and it’s late January. I can’t bring myself to box it up as if boxing up Christmas this year somehow  means Mom and I will never have another Christmas together.

I don’t know how to get past that feeling and stash the ornaments.