92.4% Drop In Cancer

Sometimes you just need to visualize the information you’ve been given to believe it. So tonight I made a graph of Mom’s CA-119 numbers to show her how dramatically they’ve dropped from February when she had her lung wedge resection to remove a cancerous tumor in her lung, to today when she had her 9th chemotherapy treatment.

The numbers have dropped from a high of 1780 to today’s reading of 134, with significant drops each month using the drug Gemzar.

CA119 January to June

Today I saw the bill for Mom’s treatments. Each individual chemotherapy treatment is billed directly to insurance at a cost of $14,539 per treatment.

The billing further explains that $3276 is paid by Blue Cross (her secondary insurance) and $2610 by Medicare for each treatment. Thankfully… no further out of pocket costs are required other than her supplemental insurance premiums and the costs for her expensive pancreatic enzymes.

The bad news… that’s $130,851 worth of chemotherapy administered from April 11th to June 27th.

The good news… an astounding 92.4% drop in her CA-119 cancer antigen numbers during that same time.

Can Mom be one of the few pancreatic cancer patient out of the 53,000 or so diagnosed this year who go on to beat the odds?

I’m betting she is. 

Mom CA119 Graph

RX: Remain Hopeful

“I”m not exactly good stock” my daughter told her boyfriend when he asked her if she ever wanted to have kids. “Cancer of all kinds…it’s all in my family” she said.

When I listened to her telling me about this converstation she’d just had on the way home after her date,  my heart felt a deep sadness. I had not realized how the cancer in our family had impacted my daughter in this way.

Cancer rolls over us all, imprinting on our souls fear and uncertainty, robbing us of the joyful spirit that was gifted to us when we arrived. 

As we chatted a bit more and I found myself reminding my sweet girl (and myself) that despite all the genetic and environmental fears, good things still happen even when cancer comes calling.

“Look at you!” I said. “If we’d been fearful off all of those things we’d never have brought such a smart, funny, kind person into the world. No one is without health issues and you were defintely worth the gamble.”  She smiled and nodded, but I know she wasn’t 100% convinced.

My daughter never got to know my father as he died of colon cancer when I was 17. She is very close to her grandmother though, and although she doesn’t really talk about her Grammy’s cancer she’s paying attention to it all. Undoubtedly worrying about her grandmother, but also worrying about her own mortality and how having so many family members with various types of cancer in her family will impact her future.

Last night was the first time I really understood how real that struggle for faith and understanding is for her. It’s one that I battled myself, but had forgotten about as I got older and gained more life experience.

Eventually our talk led to laughter – as it often does with us – and I think she understood that despite the ugliness of the disease and the fear it brings, there is still more power in life’s beauty and renewal.

I’d be lying if I didn’t say that I have hope that one day I will be a grandmother holding a healthy baby in my arms. However, whether that happens or not my greatest hope is that the fear caused by cancer in my family won’t destroy the possiblity of motherhood for my daughter if that’s what she wants in her life.

Cancer will try to spread an infection of fear and doubt throughout a family, but that doesn’t mean its effects can’t be treated, managed, or even cured with persistent hope.  

 

Still Here

As we slowly walked through the hallway towards checkout Mom spotted three large cardboard boxes in a side office labeled in black ink: “deceased”.  Not really what you’d like to see in the oncologist’s office, however after you gasp and catch your breath, you do realize you’re still alive and thus, on the right side of things.

Tired Is Good

Unlike the chemo treatments before, this last one really took its toll.  Mom’s blood sugar was off the charts at around 330 upon waking one morning (a side effect of the drug Prednisone – a steroid) and her fatigue had been so significant that each day it was a struggle to stay awake and engaged in life.

Sharing this news with the doctor today she said: “Start dropping the dose and get off of it. I think the pancreatic enzymes are doing their job and you probably don’t need it anymore. It should also help to reduce puffiness overall.”

Good news!

She then mentioned how low the CA-119 numbers had been. “Below 200… kinda makes you think this one might drop to zero doesn’t it?”

Well yeah, but to be honest it’s not really something that happens so we’re sort of holding our breath and peeking at the numbers with cautious optimism. 

The doctor decided that since this was Mom’s 3rd cycle (month) of chemotherapy and it’s been working so amazingly well that she’d drop the dose of the drug (Gemzar) to a lower dosage to see if it would be effective, but less fatiguing. “I still want it to keep working this well though, so we may have to play with it a bit” she said.

The new plan is chemo at a reduced dosage every other week, while tapering off the steroids. Two more months of treatment – unless the numbers drop to zero in which case chemo would cease.

Either way a MRI will be done at the end of the five cycles of chemo to visualize and measure the tumor… if it’s still there. The CA-119 number on Monday is what we’ll be eager to see.

I See The Pony

It’s only been a few short months since our lives were turned upside down with Mom’s pancreatic cancer diagnosis. It’s an incredibly gut wrenching journey that when we set out on it seemed to have only one end.

But today with the doctor’s surpise and delight at her treatment’s results it doesn’t seem crazy at all to consider the possibility that despite the abysmal odds remission is not only possible, but likely for my Mom.

I couldn’t be happier or more humbled by that prospect.

Cycling Through Treatment

Just now ending the 3rd cycle of chemotherapy for pancreatic cancer, Mom is doing remarkably well. No new side effects, no nausea either, and other than substantial fatigue that is expected with chemotherapy of any kind, she feels pretty good.

Taking a week off between Gemzar chemo treatments as well as taking 20mg of Prednisone (a steroid) each day in addition to Creton 25’s (pancreatic enzymes) when she eats, seems to be a good treatment fit for now.

Today Dr.Savage explained that the CA-119 test numbers should eventually stop dropping and plateau. It would be at that time that another MRI would be done to check the size of the tumor and consider other treatment options.

Other approaches to treatment might include adding another drug to continued chemotherapy infusions for more cycles of treatment, or stopping chemotherapy all together as if the numbers are low enough (under 200) to be considered in remission from the disease.

Another option might be to use directed radiation to attack the tumor if it’s small enough and there’s no metastasis.  Maybe even consider a less invasive surgical approach to remove the tumor under the right conditions.

It’s tough to know exactly what will happen. Mom’s cancer is in no way reflecting the ‘usual’ course for this disease. There’s no precedent for treatment for this cancer diagnosed at such an early stage, but not surgically removed.

In late January when Mom was diagnosed, we weren’t sure she would be around to see another Southern Oregon summer. Now as we enter into the summer season and her hair starts to come in a little bit at a time, we’re talking about August when we expect she’ll attend her 60th high school reunion.

Currently, Mom is living with pancreatic cancer, but not being defined by it. She’s able to see friends, go to church and get some things done that she wants to do around the house. Life isn’t the same, but it’s not all bad either.

I’m very proud of the warrior spirit that has brought her to this point in her life, and hopeful that her cancer journey’s lessons will ultimately be the shining example that gives others hope.

To read other stories of hope related to pancreatic cancer, please check out the Cancer Compass forum.

Babies In The Birdhouse

“Life” has returned! Right as I was about to give up and lose hope, they are back. Baby birds in the birdhouse outside my window. Right on the heels of the news of Mom’s dramatic improvements in her CA-119 numbers.

Back in January when Mom’s lung and pancreatic cancer were first diagnosed, I started this blog to share news  and make some sense of it all . I had started looking up information on pancreatic cancer to educate myself about the disease, but quickly found it all too disheartening to continue to read.

Information helped and hindered at the same time. Too much information felt crushing to my spirit and too little made me feel off balance. In truth, I felt everything as a dull thud, and each day was as if I was set on auto-pilot to a destination unknown

Now months later I’m still wandering around in the clouds not truly feeling like I’m in control of navigating my journey, but the sun is peeking through the clouds in my head, illuminating a world I’d been missing and I’m not looking away. The new normal is not as it was before but it’s not all bad either.

The birds returning to the old weathered birdhouse is a hopeful sign.  Despite my lack of faith in their return, they came to nest here yet again and live out their purpose.

Interestingly, the birds that are nesting in the birdhouse this time are different than the birds before them. A different species it appears.  A little larger, not quite as pretty, with louder voices.

Maybe it’s just me, but I think I just saw a pony around her somewhere too. 

 

 

Celebrating One Day At A Time

In one of my first jobs after graduating from college I was employed as an adolescent substance abuse counselor for a 28-day residential treatment program. Each day I’d take 10-15 teens to AA and NA meetings in which we would all recite the Serenity Prayer.

In reciting that prayer hundreds of of times in its short 3 line version, I went through the motions, but I didn’t really feel it.  It wasn’t until I read the following version that I took the spirit of the prayer to heart and felt like I was part of a conversation with my Higher Power.

 

God, give me grace to accept with serenity
the things that cannot be changed,
Courage to change the things
which should be changed,
and the Wisdom to distinguish
the one from the other.
Living one day at a time,
Enjoying one moment at a time,
Accepting hardship as a pathway to peace,
Taking, as Jesus did,
This sinful world as it is,
Not as I would have it,
Trusting that You will make all things right,
If I surrender to Your will,
So that I may be reasonably happy in this life,
And supremely happy with You forever in the next.
Amen.

I feel the power of God surrounding me a lot lately. Carrying me through the tough stuff, letting me rest when I’m at wits end and then setting me down gently to move through the next challenge.

It’s easy to forget that you’re not doing this all yourself when you’re weary and scared.

‘Digging for the pony’ sometimes means making the effort to focus on the joys and to let go of the sorrows.

Despite Mom’s cancer diagnosis and the changes that have taken place in all our lives because of it, there’s still a lot to be thankful for and as my dear friend Samantha reminded me the other day.  And things that need to be celebrated.

Today I went to Costco to order a cake to celebrate my daughter’s graduation from high school. Mom will come over to our house to share in a family dinner the day before the ceremony, and thanks to the wonders of technology will be watching graduation via YouTube the next day in the comfort of her own home.

Mom had just finished another round of chemo today when I saw her this evening and she looked a little pale. Tired and a little anemic, having lost more of her hair since we last saw each other only days before, but doing OK with it all and bearing good news.

Her CA-119 numbers had dropped yet again by a significant amount. (Down to 345 from 564 the previous week.) The chemotherapy is working much better than the doctor expected and Mom is tolerating it better now that a routine of one week on and one week off has been established.  Staying hydrated and resting more has also helped. 

I was delighted to hear her news and my heart lept as I thought about the positive trends and exciting events we’re all experiencing as a family while we transition into new phases of our lives.

Cancer sucks, but whether it happens to you or someone you love it brings into clear focus what’s actually important in life.

“Living one day at a time, Enjoying one moment at a time…” just like in the Serenity Prayer.