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!

 

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Stay The Course

We all have a list of things of which we are afraid. For most of us our own mortality is the top of our list. I wonder if that’s why some people run and hide, detaching emotionally and shying away from all contact when cancer is part of the deal?

Some Have The Strength

For months now Mom has bravely battled pancreatic cancer, but her difficult struggles with medical issues really started years ago with the discovery of two aortic aneuryms. Doctors have waited and watched them grow to within a centimeter of what insurance would consider needing surgical repair.

In addition to her aneurysms, 22 months ago her hip spontaneously fractured. What was to follow was a painful journey that included blood clots and a pulmonary embolism.

Warning signs of the cancer within. 

All of these things could have killed her several times over, but thankfully they haven’t. They have however, changed her both in appearance and in stamina. She looks in the mirror and there is a stranger looking back at her.

She hates it. 

Her resolve to get better and be more like the person she sees in photos around her house is tested every day, yet somehow she finds the incredible fortitude to press on with the drugery of the routine related to trying to get better, and the faith to believe better days are still possible.

I marvel at her power and drive. Even when she can’t see or feel it – I do.

I’m so proud of her!

Some Can’t Take It

There are many dear friends and family members who have remained connected through phone calls, texts, cards and visits. These people mean so much to us both.

They offer daily affirmations of hope and prayers for our journey that I know have carried us through many, many tough days and nights.

Then there are those who have disappeared. 

Mom and I both know how difficult it is to remain in touch. We’ve dropped the ball with that sort of thing over the years too. Life gets busy, and things happen.

We get it.

But reflective of the careers we chose in law enforcement and nursing where we would be the ones running towards the disaster to help, we tend to do that with people too.

Not everyone is like that though, and that’s a tough thing to accept. 

I won’t lie.  It hurts when you see someone you know when you’re out and about and you know they see you too, but then they turn and walk away as though they did not.

As someone going through chemotherapy, that scenario is made even tougher. They can’t help but think it’s because it’s just too hard for them to say “Hi” for fear of what conversation might follow.

Or maybe it really is the lack of hair and they didn’t recognize you?

What I wish in those moments is that the fear that makes someone turn away could be replaced with compassion and courage.

I wish that just for a scary second, defenses would drop enough to prompt a soulful jump start which would be strong enough to pull those involved through the awkwardness of the moment.

Opening the door to love, understanding and connectedness.

 

10 Tips For Friends & Family

If you know someone going through cancer treatment remember they’re still the same person you know and love, sans hair and stamina.

Here is a short list of ways that friends and family who want to remain connected to someone who is fighting cancer can remain connected to them, no matter where they are in their disease process.

  1. Gently embrace them or hold their hand and look at them while you talk.  Physical touch lets them know you understand without using words. It also lets them know you understand you won’t catch it!
  2. Call to check in.  The conversation doesn’t have to be long and it’s something to look forward to when you’re stuck at home or in the hospital getting treatment.
  3. Ask, but don’t focus on their cancer.  Being curious is normal and understood, and your asking about it shows concern which is appreciated.
  4. Share the good stuff!  Talk about what’s going on in your life or share a happy story.
  5. On days when they have the energy, do something fun together. That can be going to lunch or just hanging out together playing a game of cards or watching a movie.
  6. Offer to drive them somewhere or run an errand for them. So much of life is in the routine stuff, but when you are fighting cancer your energy is sapped. Having someone mail letters at the post office, pick up prescriptions or taking the wheel for awhile, is a big help.
  7. Promote healthy, positive thoughts. It’s easy to get stuck in an ugly, negative space in your head. Fatigue, fear and loneliness can create a lot of mental monsters. Help to beat them back into submission with some good stuff!
  8. Imagine if roles were reversed and act accordingly. What kind of friend would you want or need if you were the one who was sick? What would you do? How would you feel? What would you need from others?
  9. Be honest. A cancer diagnosis may or may not be terminal, but either way it takes everything in your life down to the essentials. Be real and stay connected throughout the process. It’s within those moments ‘the good stuff’ in life is born.
  10. Remember they are still in there.  They may look different. More frail or less excited to be engaging in the pursuit of life, but inside your loved one is still the same spirit you share memories and a connection with today.  Don’t abandon them. They need you.

 

 

 

 

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.

 

 

 

Down But Not Out

Independence Day this year was spent at the local hospital. Two days before Mom had develped a fever. She’d been particularly lethargic following her chemo treatment a week before and had not bounced back which was already concerning, however when she reported her fever the on-call doc for the oncology group said “Go to the ER.”

Inpatient Treatment

Being in the hospital for any amount of time isn’t fun.  The sights, the scents, the noises and the poking and proding done to you as a patient are a constant. None of it restful.

Despite this, Mom had a great group of nurses and both her hospitalist docs were exceptionally kind.  Finding out Mom is a retired nurse seemed to only add sweetness to their communications which was fun to see. I think it added a new layer of understanding on both sides.

High powered antibiotics were give via IV, then eventually via her port. Her fever subsided, but her legs which had been red and swollen due to lymph edema for the past year or so, looked especially nasty.  The fear was cellulitis in her legs or sepsis – neither of which would be good for an already immune compromised patient.

Mom legs 7816

Mom had also developed very high blood sugars, so she was given insulin and put on a low-carb diet.  The question of whether to keep her on steroids or not came up, and they decided to keep her off of them as they can be the source of the spikes in blood sugar.

All of it seemed to be kind of scary, but certainly not as bad as it could have been.  I was thankful they’d admitted her to the hospital, and could measure all the ups and downs for future reference. Her lack of stamina was tough to watch, but over the course of 9 chemo treatments in the past few months I knew this could change in a matter of hours too.

When anyone who cared for her heard pancreatic cancer diagnosis with “palliative care” their demeanor slightly changed. Even if just for a moment their face became softer and they took on a more somber tone in the way they related to her. I saw it as respect tinged with sadness, and a recognition of the medical limits to her care.

Three days and lots of meds later, Mom was released home with 10 days of Keflex and a “Good Luck”.

She was visibly weaker with red, swollen legs, but no fever. Time to go home and rest until the visit with the oncologist at the end of the week.

Like A Box Of Chocolates

You never know what you’re going to get when you go to the oncologist.  They are masters of evaluating test results, looking at the patient, listening carefully and then changing course if needed.

Yesterday Mom had an early lab appointment followed by a visit with Dr.Savage – the usual routine 10 days post-chemo infusion. Her primary doctor had called to setup a post-hospital visit for the day before, but had cancelled it when he found that this appointment was on the books.  (I always feel lucky that both her doctors take such good care of her. It might help that they are married to each other and seem to like her too!)

Dr. Savage took one look at Mom’s legs and said “It’s very unusal to have cellulitis in two legs, and I think this is a side effect of the Gemzar (chemotherapy), so why don’t we stop it and give you a rest?”

Hearing the doctor say this was both a relief and a jolt to the undercurrent of fear that seems constant now.

“What if we stop the chemo and this sucker fights back with vengeance?”

Dr. Savage went on to explain that since the CA-119 numbers had continued to drop to such low levels that she expected to see the numbers either level off at the past 134 or drop even lower. (As I write this, we don’t yet have the new reading from labs taken yesterday, but I would expect a sub-100 number.)

She did mention seeing the results on a graph (hers… not mine) and how great it had been to see such a plumet in the numbers. I know that’s part of what has kept us going through this whole process – knowing the numbers are dropping. I pray it continues.

“In addition to stopping the chemo I’ll order a MRI for next week (to check the size of the tumor) and then see you back here again after that.  How does that sound?”

Sure. Yeah. OK.  

In all honesty, stopping chemo sounds like a scary proposition because we fear the poison being pumped into her is the only thing keeping this thing at bay. However, it also sounds great because now we will be able to visualize the impact of the chemo on the tumor in her pancreas. And maybe grow some hair back!

It’s sort of like trying to relax as you hold your breath, but being afraid to stop because you know you’re still underwater. 

Resting & Restoring

Mom 7816

There are many things that Mom would rather be doing than falling asleep every time she sits down. But for right now it’s all about the rest and letting the medicines smash the invisible foes.

Twice a day this means being hooked up to large leg sleeves that painfully pump her legs to squeeze the pooling lymph excess up so that it may disappate in her system. It also helps to prevent blood clots, which are common with pancreatic cancer.

The nausea that had been minimal when chemo was first introduced, became acute in the hospital.  Now she takes medicine and a puff off her pipe from time to time. Both make her sleepy, but do the job so she can continue to eat which is important.

The steroids are back onboard, but they are both good and bad. They make her puffy and affect blood sugar. It’s all a dance that seems to have ever-changing music.

Each day is different, but the same. Frustratingly slow changes, and many of them painful.

Mom and I ride the rollercoaster of emotions together. I hold her. We cry and then we go on. Laughing much of the time too, and all the while being thankful that the journey continues.