Crazy Cancer Story Continues

What stage am I? 

This was the question Mom posed to Dr.Savage this afternoon at her weekly office visit. At first the doctor found it hard to answer the question. She talked about how staging related to whether a cancer was resectable (you can operate to remove it) and whether or not it had spread. She paused a moment and then said…

We didn’t start chemo to cure your cancer, but rather to extend your life and give you a better quality of life, however I’ve never before seen a pancreatic cancer patient’s numbers drop so quickly or so much. It usually takes surgery to remove the cancer before we see this kind of reduction.  I can’t explain it, but if it continues to drop and goes below say… 100 or lower, we can consider stopping chemo, rescan you with a MRI and look at other options. Maybe directed radiation of the tumor or a less invasive surgery to remove it?

As crazy as it seems Mom’s CA119 blood tests; something that is done every Friday and viewed prior to chemotherapy on Mondays, have shown a continued reduction in the cancer antigens using just one chemo drug: Gemcitabine.  Not just a few points, but big leaps each week!

Even crazier… that drop in her numbers started before she began chemotherapy. She attributes it to the prayers she is receiving each day from her church family and friends, and whether you believe in God or not, you can’t dispute that something greater than science is working in her favor.

At least I can’t… and I’ll continue to pray assuming God and His team are on it!

Currently Mom is taking a prescription that mimics pancreatic enzymes. She takes these expensive, yet effective pills with all her meals and snacks and it’s working to keep her nausea at bay.  She is interested in eating, and eating normal meals so she is also keeping her weight up. (Something the doctor encouraged her to do.)

She is also sleeping pretty well with 6 mg of Melatonin per night and isn’t in pain other than the normal aches and pains experienced before her cancer was diagnosed.

There are a few side effects from the chemo: exhaustion for about 5 days after treatment, forgetfulness, gray spots on her skin, yeast infections, hair loss and achy bones for a day or two after chemo.  While not great, they are tolerable when you know it’s for the greater good.

Mom says that in addition to seeking more ‘normal’ out of life, perhaps the hardest part of living with her pancreatic cancer diagnosis comes in the middle of the night when her head has time to wonder about what comes next. Time to worry, think about the things she will miss and how her diagnosis effects those she loves.

We lost a dear friend to pancreatic cancer last year. She was diagnosed and gone within 2 months. Elaine is often in our thoughts.

Yet another friend was diagnosed last year, had surgery to remove part of his pancreas along with his mass and amazingly has been declared cancer free, yet still battles other issues related to his surgery.

What stage am I?   

I’m not sure whether or not we got the answer to that question or even if the answer matters.  But I would like to believe that pancreatic cancer has met its match in my Mom, which will offer hope to others fighting the same battle.

 

 

 

Bone-Weary Warrior

Bone-weary is the only way to describe it. Generally the crush of pain hits in the middle of the night,  about 36 hours after her chemo treatment. Unbelievably achy muscles and joints; flu-like in that they are often accompanied by severe chills, with waves of nausea. This will last for about three days and then it will start to subside, just in time for another chemo treatment.

Soldiering On

Today I heard it it her voice. She’s contemplating giving up.  While this saddens me, I understand. My heart urges me to remind her of the great numbers we saw in the blood work report last week.

A 200 point drop in the CA-119 cancer antigen test, putting her at 800 – dropping to more than half of what they had been prior to only three infusions. She perks up a bit.

Last week when she was off chemo Mom was much more herself. We laughed, she had some more energy and life took on a sparkle again. Visiting with friends, looking at the roses in her yard, and making plans. We both relished it and hoped that despite going back to infusions for a couple weeks, there would be good days again.

We’ve got to remember it’s just part of a cycle, not the whole thing.

 Drug Wars International

Last week Mom received a prescription for Creon 24, a pancreatic enzyme that is to be taken with meals and snacks. The drug supplements the waning pancreatic enzymes that when they do their job, help to digest food and prevent painful pancreatitis.

The problem: Creon 24 costs $2,000 for 90 pills without insurance, and $500 with insurance.

The pharmacy called to make sure we knew this prior to offering her the 30 or so pills they had on hand.  We got the pills, and I immediately went online to do some research to see if we could afford to get her more of them.

I found that the price of Creon 24 was very high no matter what, but Creon 10 or Creon 25 (UK version – same as Creon 24 US version) was more reasonably priced. Taking the 25’s would be essentially like taking the 24’s – about 6 to 10 a day for the foreseeable future.  The 10’s would require about 20 or so a day, which seemed much less appealing due to the large number of pills she already has to take each day.

Since I’ve had some of my own drugs skyrocket in cost I’ve dealt with international pharmacies to keep costs down. I felt confident that if Mom’s doctor was on board for a written script, we could get her some Creon for much less.

Thankfully the written prescription was no problem and after a small hassle with the Canadian source to get things done, 500 Creon 25’s were being sent for $343 shipped, arriving in 7 to 10 business days.

Retail price for Creon 24 in the US: $22.22 per pill.  Price with insurance:  $5.55 per pill. International pharmacy price for the same drug (UK version): $0.68 per pill.

Advancing On The Hill

I think the toughest part of watching someone you love go through cancer treatment has to be that you can’t take the pain from them – even for a little while – and make it your own.

Just to give them a rest from the physical beating their body is taking, and give them a mental respite from the machine gun like noise in their head that repetitively fires off the thought: “How long can I go on like this?”

I know she does it without knowing why sometimes.

I guess we all do.

Putting one foot in front of the other and going through the motions of living.  Being uncertain of the future, yet still talking about it and making plans.

There are more days ahead, and I have faith that some of them will be good ones – for which I’m grateful.

Some days it’s tough not to feel  like a sitting duck in the middle of a pond with the enemy lying in wait in the tall grass all around.

Other days though, the days when the conversations are filled with genuine bursts of laughter followed by tight hugs, are the days that make the exhausting, painful ones almost disappear.

Almost.

 

 

 

For The Birds

After the birth of my daughter in the Spring of 1998 my Mom painted a birdhouse and we hung it in the tree right outside my daughter’s window. Each and every spring since that time we’ve enjoyed watching bird families move in and out of that birdhouse…until this year.

As my daughter prepares to graduate high school and makes plans to leave our nest for college in the fall, I can’t help but draw a parallels between the birdhouse and current events.

It’s almost like there was some cosmic shift that told the birds to stay away, but I didn’t get the memo.

Cruel Chemistry

Three weeks of chemo have been tough. Nausea, the inability to sleep, achy bones, chemo brain and hair loss among them. It was expected, but not so soon. Not so totally life-altering.

After meeting with Dr. Savage last Friday we learned that Mom’s platelet counts are excellent. “As good as a healthy person, and totally unexpected for someone on chemo. Your bone marrow is tolerating the chemo very well” , Dr. Savage said.

The CA-119 blood tests had not come back yet, but the hope is that those numbers will continue to drop even with using only one of the chemo meds. The two in combination had caused a red, itchy rash – an allergic reaction – and the fear had been the more effective of the two would have to be dropped. Thankfully that is not that case.

The past week had been really difficult for Mom.  Monday – a chemo day – was OK because they pump her full of steroids and anti-nausea meds prior to her infusion. Tuesday is OK for the first part of the day, but then Wednesday, Thursday and Friday are ugly.  (Prior to this visit we were not sure we’d make it on time as Mom was “going at both ends”.)

After seeing her Dr. Savage decided to give her a break and go to a 2 weeks on, 1 week off schedule for a 22 week cycle of chemo.  This will continue if she can tolerate it. The point being that chemo is supposed to help, but if it’s so debilitating that Mom’s quality of life is nil, there’s no point to continuing it.

Leaving the exam room we stopped off in the American Cancer Society’s office in the Providence Cancer Center.  A lovely lady who runs the office greeted us and soon was helping Mom to try on head covers and fitted her for a wig.  The day before this visit, Mom had started losing her hair in clumps.

We left the office with two bags full of gear and literature – all available for free to cancer patients. A tremendous service, lovingly given at such a difficult time.

I found it so hard not to show my tears during that visit. Always right on the edge of weeping… as I am still. 

Mom’s dear friend Mary had met us for her doctor’s visit and gone with us to the wig fitting. Mom wanted to go to lunch with Mary, both to keep the ‘normal’ going and to visit with her friend. We ate and soon after, Mom had an upset stomach.  I got her to the bathroom, but  was evident we needed to get home.

Just Cut It Off

Mom’s hair has always been gorgeous!  A silver streak had appeared in her dark brown hair at age 14 and it had spread beautifully throughout over the years. Many, many times I’ve been with her when ladies have asked: “Is that real?”

The real deal was now being found in clumps on her pillow and tufts on the floor. She could no longer brush or comb her hair, and her scalp was becoming extra sensitive; pink and sore to the touch.

Mom asked if I would cut off her hair. I knew she really was distressed by the longer pieces falling out on her collar and I wanted to help. I have to admit I had mixed feelings about doing it.

Where do I start? Front? Back? Sides?  Will it hurt her when I do it? 

We didn’t have any shears so I got all the scissors she had in the house and I laid them on the counter. I got a water bottle spritzer, a comb, a towel and my courage gathered together before beginning to make a cut.

I started at the back. I made small cuts around the nape of her neck, then worked around her ears. Soon I was working the back of her hair; trimming it as close as I could to her scalp, in a pattern similar to the natural growth pattern of her hair. I did the sides of her head the same way, then the top in sort of a short flat-top do. (I pretended that I was giving her a punk style and considered adding some gel.)

I trimmed the front of her hair, but still left some longer bangs, knowing they wouldn’t last for long.

Then I took photos on my phone of the front, sides and back and showed them to her. She was kind and said: “You did a good job.”  I commented on how I’d missed a spot that still needed trimming and she assured me: “Don’t worry, it’ll come out.”  Then she pulled on it and it did.

I put on her soft, cotton cap and tucked her into bed. I then swept her hair up off the kitchen floor.

After sweeping I went to the outdoor garbage can to throw away  the hair I’d just cut off my mother’s head and caught myself trying to save a bit of it in a plastic baggie. About half way through the action I stopped and said out loud: “It’ll grow back.” 

I tossed the baggie and the hair away, letting it all go…for the moment.

As I put way the scissors in Mom’s office I noticed a photo displayed on the digital photo frame I’d given her for Christmas. It made me smile and tear up at the same time.

It was a photo of my Grandma Garnett – Mom’s mother – with me. Followed by a photo of the three of us together.

I took that moment as a sign. 

With renewed strength I said “thank you” and moved to check on Mom in the other room. She was cozy in bed with her new cap on.

As adjusted her pillows for her Mom said: “Something is poking the back of my head!”  I replied: “It’s your hair.”  We both laughed.

I kissed her before leaving to get in my car and make the 45 minute drive home.  It had been one of our hardest days so far on this crappy cancer journey, and different in a weird way that really can’t be explained in a blog post. But somehow we’d mustered the strength to trudge through it together.

Birds or no birds, our house still stands. Waiting for life to return, perhaps this time in a new season… with a new hairdo!