dig for the pony 3 ideas

Three Ideas To Ponder

Mom had a recheck appointment with Dr. Savage today. She looks good, but unfortunately the CA119 test (cancer marker test) showed over 4600 – the highest it has ever been.

The most recent chemo treatments are not working to keep the cancer in check.

And to add insult to injury, Mom had fallen at home an hour or so before her appointment.  Trying to reach her dog on the floor, she lost her balance and fell on her left side, which is now bruised and very sore.

It was a frustrating, painful morning, but hope was still being offered.

Dr. Savage said she’d been thinking about Mom’s case in the middle of the night and came up with three possible courses of treatment.

Treatment Option 1: Chemo Cocktail

Apparently patients that can’t tolerate oral chemotherapies often do just fine with infusions. The doctor hopes that will be the case with Mom.

The new mix will be made up of four different drugs, administered once a week.

She’ll get her first dose of this new mix next Tuesday.

Option 2: Radiation

If Mom’s cancer has not metastasized, direct radiation of the tumor in her pancreas is possible.

Her last MRI was in October, but on Monday she’ll have another one to see what’s going on in there.

If the tumor is still a single, this would be an option.

Option 3: Immunotherapy Clinical Trial

Apparently there’s an immunotherapy clinical trial that has not had a pancreatic cancer patient as a subject.

If she did say ‘yes’ to this one, it would be free to do so, but the side effects are as unknown as its curative effects.

All these things are extremely hard on the mind, body and soul. She’s hurting much of the time, and very, very tired.

We talked about all this being her decision.  For as much as I want her to be with me, I don’t want my own selfishness to put her through painful days.

For now, I’m just happy there are options available. And leaving room for the possibility of a miracle.

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Season of Change

With the turning of the leaves so changes Mom’s health.  Painful days and nights are now the norm, with unrelenting fatigue no matter how much she sleeps.  Unsteady on her feet, falling is always a possibility.   Itchy skin, high blood pressure and blood sugar, with no other reason than her pancreas is sick with cancer.

Summer Was Great

Mom was able to attend her 60th high school reunion and enjoy her birthday with all the grandkids.  Outings became more routine again, and going to the market wasn’t such a chore. Remission – something we never expected, was a tremendous gift of time.

Last week as summer turned into fall Mom went to see her oncologist for a check-up after two months of being off of chemotherapy.

Autumn, Not So Much

Because Mom is having so much pain in her midsection and into her back it was decided that she should have another MRI.  Pain medication Norco was prescribed, and it was OK’d that she use whatever she needed to stay comfortable including Twig Tea made with the stems and leaves of a neighbor’s marijuana plants.

Chemo may still be on the table, but despite the miraculous disappearance of the tumor, it was hard on her system and Dr. Savage would like to avoid it for as long as possible.  Mom had gone to the hospital with complications as a result of the chemo drug that had worked so well against her cancer, and there’s no guarantee it will do anything other than make her feel worse at this point.

We left the doctor’s office knowing that the likelihood is that the cancer is advancing yet again.  About 24 hours later I checked the CA119 blood test and it was 898, up from the mid-300’s it had been a month ago.  An unfortunate confirmation that something is going on and it’s not good.

Everyday Rhythms

Tonight while talking with Mom on the phone we agreed that we feel this mutual sense of urgency to make meaningful conversation all the time now.

A need to talk in depth about everything, paying strict attention so as not to miss any detail.  The crazy thing is, what we end up doing is much more mundane, but equally enriching in its own way.

We talk about our dogs, what I found on sale at the store and what she might like to fix for dinner tomorrow.  We plan for my next visit and what I might help her accomplish while I’m there (changing her bed, going through closets to look for donations to the church yard sale, etc).

And each night when I call her and tell her I love her and she replies with the same, we find a comfortable rhythm in catching up on another day that has passed and planning for the next one.

Nothing urgent about it, and yet, meaningful all the same.

 

 

 

 

Ups and Downs

“Well…shit.”  That was the only thing I could say when I saw the number 367 in Mom’s labs.  The CA119 numbers had been below 100, allowing for a declaration of remission 6 weeks ago, and now off chemo for that same time there have been some new symptoms of disease with the higher numbers.

Just yesterday when we’d gone in to see Dr.Savage after a month of restful remission Mom had asked her: “What if the CA numbers have shot up to say…500?”

The reply was swift. “We’d probably do a scan to see what’s going on. Manage symptoms and go from there. If need be we’d put you back on chemotherapy, but because that’s so hard on your system we’d like to avoid it for as long as possible.”

Dr. Savage called her today and we’ll go in again in two weeks to check the numbers and reassess. The doctor said this wasn’t what she’d hope would happen, but also reminded Mom to remember how high the numbers had been and how well her body had responded to treatment.

Lunch & ER Visit

After that visit we went to lunch with a group of friends from Mom’s days in high school. Having graduated 60 years ago, these friends are an anchor to a happier, healthier past and a reminder of the love that exists despite the passage of time.

One of their friends had died only the day before. She had not been healthy enough to attend their recent reunion as Mom had, and refused to see most of her friends prior to her death.  Something that had deeply saddened many, even if they understood why.

Mom and I were some of the last to leave the restaurant. Mom had gone before me out the door and as I glanced up I saw her start to fall forward, lurching as you do when you’re trying to regain your balance, towards the street.

I couldn’t run fast enough.  I could hear myself yelling and feel myself trying to get in front of her to break her fall.  As we both went to the deck; landing in front of our parked car, I’d hit on my left side with my arm under her.  Mom had fortunately put out her hands and hit on her “good” knee.  (The other side of her body had been repaired with rods and pins nearly two years ago when her hip spontaneously fractured.)

Fortunately two of Mom’s friends were backing up and saw us on the ground.  They helped me get her up and into the car after Mom (the retired nurse…) assessed her own condition as “nothing is broken”.

Not completely convinced and pumped with adrenaline I took a look at her knee and told her I would be driving her somewhere: her doctor’s office, Urgent Care, or the ER, but not home.

We spent the next 3 hours at the Emergency Room where Mom’s knee was xrayed and she was ultimately released home to ice and rest her knee. On my pants was her fettuccine Alfredo leftovers from lunch that she’d hoped would be her dinner.

What do you think about KFC?

Digging Once Again

It wasn’t until I was driving home from Mom’s house last night that I noticed my left side was aching in all the points my body had made contact with the roadway.

I began to think about how lucky we were to have not fallen in front of an oncoming car, or to have had her hit her face or cracked open her head.  I’m so grateful this whole accident wasn’t worse.

So with the news of higher CA119 numbers my spirits dip, but they are not crushed. Whether it’s a bounce off the pavement or lab result, life is still ours and somehow we still find ways to laugh through the tears…together.

 

 

 

 

Remarkable Remission

A decrease in or disappearance of signs and symptoms of cancer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body.

The Tumor

“What does the MRI show?” Mom asked.

It had been several days of anxiously awaiting the news following cessation of her chemotherapy two weeks ago and the MRI; which had been painfully long, just last week.

“Not much” replied Dr. Savage.

“The report indicates that there was nothing to measure. They can’t find it. Where your tumor had been there’s an area of inflammation, but no tumor and your blood work looks good. You’re not anemic anymore and your white cells are down into normal levels.”

With the CA119 numbers dropping in such a dramatic way during the course of chemotherapy treatment I’d asked Mom in the last few weeks to visualize her tumor shrinking into a grain of sand and then have it blow away.

Archangel Rafael

I’d been doing it too, and praying to St. Raphael. (Despite not being Catholic or terribly religious, I do believe in the power of prayer and in the power of angels to intercede on our behalf when asked to do so.) Still… I think this news dumbfounded us both. 

 

“I’ve never seen a patient with pancreatic cancer respond so favorably to treatment. To be honest, when we had to remove the chemo drug that you were allergic to I was not very optimistic at all. In most cases we will only get about 15% of the patients responding to chemo at all. It’s usually only a way to slow it from spreading.  I’ve never seen this happen before.”

Dr. Savage seemed just as baffled by this turn of events as we were. We were all happy, albeit in a rather subdued way, but kind of unable to really show it for fear that might jinx it.

“So…is this considered remission?” I asked.

“Yep. We’ll stop chemotherapy and do blood work in about a month.  We’ll monitor the numbers and go from there. If things still look good in six months, we may do another scan” she said.

And then she turned the page of her report to address another subject.

The Aneurysms

“There is this aneurysm thing…” Dr. Savage’s words sort of trailed off as she looked at Mom with a question mark seemingly hovering over her head. “It’s grown since the last scan. That’s not really my area, but I know you’ve had them for awhile.”

Some might freak out about having an aneurysm, let alone two of them that are quite large. However, this isn’t something that we are frightened by any longer as for the past six years doctors have scanned, measured and waited for Mom’s aortic aneurysms to grow, leak or rupture and require repair.  Both considered ‘big’, but not big enough for insurance to pay for the surgeries to repair them.

The aneurysm issue has taken a backseat to cancer as of late, so to hear that one had grown seemed almost laughable on the heels of such good news about the “POOF” of the tumor in her pancreas.

Dr. Savage seemed concerned. “I’ve put in a call to Dr.Faught (Mom’s surgeon) to see if he wants to talk about putting in a stent to repair the lower one (at the renal level above the area where the arteries branch off into the legs).  Considering how well you’re doing, we should really address this thing.”

We’ll wait and see. Prior to the chemotherapy rounds Dr.Faught had decided not to monitor her aneurysms any longer. Palliative care being the goal, with no thought that there might actually be healing involved.

Despite this news of the aneurysm growth and the thought that another procedure might be in the wings, as we left the doctor’s office all I could think was: This is a good day!  

A miracle had occurred and we’d witnessed it. Something that doesn’t come along for most people under similar circumstances.

I felt tearfully happy, and incredibly humbled. Grateful for so many people who have prayed for Mom’s healing and the strength for our family to keep moving forward despite the sometimes crushing emotions.

I kept finding myself mumbling Thank You God on the drive all the way home.  That and listening to iHeartRadio’s 80’s stations and wildly singing along word for word with every song that came on.

A good day indeed!

 

The Pony Came Out To Play

Tonight I’m preparing to travel north to take my daughter to register for college. We’ll go to fun restaurants, get in some shopping and find out all kinds of interesting new stuff. It’s exciting, and something that we’d planned on sharing with Mom along for the ride.

Unfortunately that can’t be, but the latest lab results made a huge smile cross my face anyway.

Like Winning The Lottery

The CA-119 that had been 1780 originally has dropped to an astounding 84.  The normal range for this test is 0-47.

That’s a 95.3% drop in the cancer tumor markers in the blood in 3 months of treatment of non-resectable (can’t cut it out…) andenocarcinoma pancreatic cancer using Gemzar alone!

Is this a cure?  No.

Is this more time on the game clock?  Definitely!

This is what Mom’s oncologist would call remission.

Mom’s numbers being below 100 was unthinkable when she started palliative care only a brief time ago, but the doctor had also admitted that they never see a pancreatic cancer patient that isn’t stage 3 or 4.  They had no idea how much the chemotherapy would effect the tumor, if at all. And they certainly never expected this kind of success.

In the next 10 days a MRI will show the size of the cancer still in her body. I keep telling her to visualize it going to a grain of sand and then blowing away. It’s what I do each night as I say my prayers and thank God for another day.

Learning Lessons

I think Mom’s story is one from which we can all learn.

Today when Mom’s numbers popped up on my computer screen and I felt warm tears streaming down my face as I broadly smiled for the first time in months, felt like I had learned these valuable lessons. (I hope I can remember them all the days of my life.)

Leason 1:  Learn to be patient with yourself and others as you struggle to gain a mental, emotional and physical foothold when your life has been impacted by significant change. 

Leason 2:  Learn to have faith in something bigger than yourself, especially when you don’t understand the process, think everything is unfair or fear what’s in store for you at the end of it.

Lesson 3:  Learn to celebrate magical moments that don’t come around every day, and remember to have reverence for the great universal power that gave you the gift.

 

 

 

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

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.