Better News

This is a quick update to say I (finally!) had that “good old-fashioned x-ray” as my oncologist called it which showed nothing significant – only a few calcifications which could come from the running.

Phew!

There is no bone involvement which would have meant a completely different view of my future.

There is still the PET scan to do in August, but I’m feeling pretty optimistic that too will prove to be something ordinary, some benign process going on versus cancer. Of course I can’t feel 100% at ease until I hear that, but I do feel a LOT better than I did when I wrote that other post a little over a week ago.

In the meantime, I forgot to mention  . . . I got a hair cut. (!!!)  You might be wondering how that’s possible, but yep, I actually needed one to shape things up.  And  . . . the other day?  I actually used – wait – hairspray!

Such a tiny thing, but emotionally huge in significance.  Anyone out there who’s lost hair due to treatments – you know what I mean.  If you’re going through this and you’re staring at your bald head, wondering when, when, when, it took about eight months (for me), to get back to something where I look more like myself. It will take longer if you had long hair.

So, from this:

The hair decided to leave. It had had enough.

To this:

To, finally, this.

In Davidson NC yesterday for a book event. The first picture where I felt like I didn’t need to wear a hat!

That’s the thing with cancer. When treatment is going on, you’re fighting the devastating results to your internal systems, and praying hard it all works out. There’s a deep emotional quotient too, some of which is affected by outward appearance. Once you’ve gone about in the world in a particular way, cancer alters that, whether you like it or not.

I learned you have no control over it. You simply fight it, then wait, and hope and pray you can be you again one day, an altered you, but still you.

I look at pictures taken before I had cancer, and those taken now. I look pretty much the same, although I’ve lost weight, have shorter short hair, yet I also know I’m quite different physically, and emotionally.

And, I’m okay with it.

 

 

Mixed News

I’ve been wanting to do an update for some time now, and I suppose with this past week’s news, now is as good a time as any. I had my third PET scan Tuesday, June 12th. My oncologist called me Wednesday, and I could hear frustration in his voice.

He began quizzing me, verifying what he knew, and simply confirming my history. “I’m looking at your PET scan. You’ve had nodules in your lungs . . .?”

“Yes. I had a CT scan before I came to you, but it only caught the lower area, not all of my lungs, and that showed some nodules. Then we did another one at Duke, and it showed those, and a few more but they didn’t light up on the first PET scan.”

“Right, right. Well, I think this latest PET scan looks fine, but I have a call into the radiologist who read this. You know they have two people read it before they sign off, and I want to talk to the resident, make sure he’s comparing this to the one in January.”

I said, “Ooo-kay.”

Then he says, “Have you fallen recently?”

“Uh, no.”

“Didn’t you tell me you fell, or something?”

(my brain has been having some fog, so I was thinking hard here)

Finally, I said, “Not that I know of.”

“Have you started back running?”

“As a matter of fact, yes, I have, I was going to tell you about that when I came to see you in July. Yes, I’m running again, with walking in between until I feel back up to par.”

There were more questions about being ill, had I had bronchitis, or done a lot of coughing – anything like that? No, no and no, but by now I wished I HAD fallen and had suffered double pneumonia.

I could tell something wasn’t quite right.

All the questions had to do with the fact there were two new areas seen on the PET scan that weren’t there in January.  One is a new nodule in my left lung, and there is a spot on my right hip bone. This was NOT what I wanted to hear, needless to say. When you get a PET scan, they give you a “tracer” with glucose in it. You can’t eat or drink anything except water/black coffee/unsweetened tea, for example, the morning of – so the glucose in this tracer will stick to potential cancer, because, cancer likes sugar. When they look at the PET scan, they’re looking for areas to “light up,” or areas they call “hot,” which is where the glucose tracer would attach.

According to my oncologist, neither area met the criteria for being “hot,” meaning the uptake value he would have expected for malignancy . I’ve read anything 2.5 and higher, but he said he would have expected a 7 or an 8 to really indicate a problem.  These were 1.7 and 1.9. Therefore, the wording on the report wasn’t what he wanted. He wanted the radiologist to change it. The way we left off that call Wednesday was he would talk to the radiologist.

Thursday, the report was released to me through the hospital’s interface – called DukeMyChart. I could read for myself what it said. I will admit, I didn’t like it – at all.  Plus, I didn’t know why it had been released – was this the report that still needed to be changed? Or was this the final report?

Here is what is said:

Impression:
1. New left lower lobe nodule measuring up to 9 mm with FDG avidity, which
is concerning for metastatic disease.
2. Possible new lytic lesion within the right iliac bone with mild FDG
avidity. Attention on follow-up.

FDG is the glucose tracer. Avidity means an eagerness for glucose. Lytic lesion on a bone can be benign or not. That afternoon I heard from my oncologist again.

He said, “Unfortunately, I could not get the radiologist to agree with me to change his report. Because these are new areas, they are of concern.”

It sounded like they argued back and forth over the uptake values, along with the question of doing a biopsy on the lung nodule. (it’s too small to hit)

So, here’s the plan:

I’m getting a (as my oncologist called it) “good old-fashion x-ray” on my hip. He said that would help determine what’s going on, if it’s simply a benign lesion because of the running – or not. I’ve had radiation to this entire area, a pretty rigorous treatment too, and it can weaken bones. Maybe the running I’ve been doing has set off some sort of activity, and that’s what we’re hoping.  As far as my lung, I’m having another PET scan in two months. August 7th.

This means waiting, which isn’t easy to do. Despite all this, I’m feeling fairly optimistic. No, it’s not what I wanted to hear, but I keep thinking about the positives I see in between all of the negatives.

I like lists, so here’s my list of positives!

1. My oncologist said this particular cancer spreading to the hip bone would be, in his words, “an unusual pattern.”
2. Typically, treatment is completed and “we’re usually good.” (meaning, no expectations of this sort of thing cropping up)
3. PET scan avidity, (glucose eagerness) or “lighting up” can happen with non-malignant processes.
4. The glucose uptake was low, in a non-malignant category
5. He’d said, “I’m fine with your PET scan.”

The bad news  – the radiologist stuck to his impressions, meaning his experienced eye saw something suspicious. Maybe it’s simply cautionary, which is fine with me.

I will admit, this took the wind out of my sails a bit because these past six months since the January PET scan have been wonderful, mainly because the weight of worry was gone. While I still contend with side effects, the fact I’d been able to get back to something else I really love, i.e., running, was fantastic. This is my go to method of  relieving stress, and most importantly – solving story problems!

We’re always busy with work over here, and all in all, life has been really good! We’ve celebrated birthdays, been to book events, chilled out on the porch, and watched sunrises and sunsets.

See?

 

While this goes on with me, there are others in our community, and yes, right here closest to me, who are also dealing with health issues. We will remain optimistic and always, always hope for the best outcome.

He lifted me out of the slimy pit, out of the mud and mire, he set my feet on a rock and gave me a firm place to stand. Psalm 40:2.

Amen.

 

 

 

 

Well, Well…

I had my second PET scan on Tuesday, this past week to see how my treatments worked.  I won’t drag this out – the news was GREAT.  The cancer is GONE.  There is still some “activity,” but the oncologist said it’s inflammation, and that when we do another scan in three months, he expects he will see “nothing.”

As many of you know, the past few months were the most difficult of times for me, Blaine, my family and friends.   From here on, there will be close, continued monitoring until we get past the two year marker.  (this particular cancer has a 40% chance of recurrence in the first two years).  And then, after that, we will want to meet the five year goal.

One step at a time, right?

For now, we are moving on, encouraged by this wonderful news!  There’s no better song to reflect how I feel than Johnny Nash’s, I CAN SEE CLEARLY NOW. 

 

 

 

Thankful

. . . is what I am.

In my last post I talked about that six miles yet to go, figuratively speaking.  Ask any marathoner and they will likely tell you those are the toughest ones.  They were for me in the actual races, and certainly it was hard these past couple of weeks.

I turned a corner on day 16 or 17 after radiation treatment.  I’m happy to report a lot of the pain and other unpleasantness involved with that has subsided .  I’ve told others in conversations, it was not knowing when it would get better that made it hard.  At least when running a race there is a definitive end in sight, that glorious finish line.  The knowledge it’s x miles and you’re done.  Remember how I said I’d Googled about this, and read to expect between two to three weeks of extreme discomfort?

Sometimes, Google gets it just about right.  I fell somewhere in the middle of that timeframe.

There are still hills to climb (More tests).  Miles to go. (Continued healing and recovery)  Things to face.  (Results of tests)  At least for now, I am in a better place, and I am so thankful for this!

Meanwhile, the thoughtfulness of others amazes me.  I continue to receive cards, which I love to get.  I also had these delivered one day about a week or so ago.

The smell of the eucalyptus leaves was wonderful!

From our “alley cat” neighbors on the other end of the alley.

Something else happened during this difficult time, which is, in reality, a hidden blessing.  Before the cancer was diagnosed, I talked a lot about my sugar intake.  Granted, I wasn’t gorging on it, but I sort of “felt” like I was getting too much.  I had about 3 teaspoons in the morning with my coffee.  Throughout the day I wouldn’t have any, with the exception of what I got from eating fruit or carbs.  But, at the end of the day, I was always eating ice cream, or candy, or cookies – in other words, after supper.   Plus, I was drinking a beer, and occasionally would start a second (I could never finish), out on the porch after a day of writing.  I realize this isn’t all that bad, it’s more of an awareness, an observation.

I’ve mentioned how chemo alters your taste, and since treatment began, coffee, beer, and food in general – blech.  I went off caffeine for over two months.  My sugar intake was essentially zilch except via carbs.  (bland foods like rice, potatoes, until the taste of those things went whacko too)  Of course I lost weight.  Since I’ve been able to eat again, I’ve decided to try and keep my caffeine to a minimum.  When I used to drink two cups of coffee, I now drink a cup, and with 1/2 teaspoon of sugar instead of 1 1/2 teaspoons per cup.  All right, let’s get serious, probably 2 tsp per cup.  🙂  I am being honest about the 1/2 tsp though.

In my opinion, this is one of the “good” things to come out this.  Going cold turkey would have been hard.  As to the beer. . . the thought of it is still blech.  I haven’t had one since mid-September, but I have a neighbor (you know who you are!) who brought me some Bud Light (yes, that’s the only beer I drink), along with some bagels – which I found I’m able to eat.  She’s looking forward to seeing me out on the porch once again, enjoying a bottle. because to her, this will mean all’s well, and things are returning to normal.  I’m sure that will happen – when it warms up!

What I’ve found I enjoy are tart, vinegary things, and essentially plain food in general.  I can thank my mother-in-law for showing me this trick with good old can green beans some years ago.

Drain the green beans.  Add to a skillet with some bacon, or plain old vegetable oil, and fry them until they “blister.”  I like to get them so they have a little bit of darkened spots to them, i.e. a fried look.  (you can sort of see it on some of the beans)  This is truly a transformative way to cook them – they taste GREAT, and not at all like they came out of a can.

I’ve also just  recently (like today) fixed a “healthier” peanut butter cookie.  (You’re thinking, wait, what did she just say about sugar intake???)  This only has 1/2 cup brown sugar in the entire recipe.  You have to consider those chocolate chips too – but hey, Blaine is going to eat these, and when I asked if he wanted the chips added, he gave me a look that said, well, that’s a no brainer.

Here’s how they came out so once you see the ingredients, you won’t be as skeptical as I was.

Gosh.  It’s like this has turned into a food blog.  Can you tell how happy I am I can sort of eat again?

Here’s the recipe for those cookies – you ought to give them a try!

• 2 eggs
• 1/2 cup brown sugar
• 1 tsp baking soda
• 1/4 tsp salt
• 1 tsp vanilla extract
• 1 cup natural peanut butter
• 1 cup old-fashioned oats
• optional: 1/2 cup chocolate chips or chopped nuts, plus Maldon salt for sprinkling

Oven temp, 350, line cookie sheet with parchment paper

In a large bowl, whisk eggs and brown sugar together until smooth.  Sprinkle baking soda and salt evenly over top of mixture and stir until blended.  Add in vanilla, and peanut butter, stir until combined and smooth.  Stir in oats (and chocolate chips if using) until combined.

Use a cookie scoop (about 3 tbsps) to scoop dough onto parchment paper.  Use fingers or spatula to lightly press flat.  Sprinkle with salt if desired.

Bake for ten minutes.  Remove from oven, let cool on sheet before transferring to racks.  Store in sealed container for three days or freeze for up to three months.

***Note:  I didn’t have a cookie scoop, so I just estimated about three tablespoons of dough which is what they said the scoop equaled).  I thought I might have made them too big, but they baked fine in the time they said, which was ten minutes – so maybe not.  The recipe didn’t say how many this would make.  When I was done, I had 13 cookies – a bakers dozen.

As to going forward with this blog. . .

I’ve been doing a post out here about every two weeks.  What I’d like to do at this point is post when tests are beginning, results are in, etc.  This means you may not see a post from me every two weeks.  I want, as you can imagine, to eventually turn the page here, meaning this blog will go “dark.”  I want to move past this, get back to my regular old routines.  For one thing, I am returning to my “real” writing, and although the ideas for my fourth book have been elusive, I can focus a little better since I’m not thinking about how uncomfortable I am.  So, I really need to sit down and decide what the new story is going to be.  I also have my regular writing blog, and a newsletter that is WAY over due!

And so, with that, just know, I’ll be sure to post when I have something important to share in relation to this part of my life.

Otherwise, picture me writing away, or at least giving the impression that’s what I’m doing.

I really appreciate all of you being “here,” and supporting me as I navigated some pretty unpleasant times.  It meant more than you know.

P. S.  (I do have other color shirts – it just so happens THIS is the one I always seem to be wearing when a pic is taken!)

 

 

 

 

 

 

 

 

It Ain’t Over Till It’s Over

Last Friday, October 27th, was my final radiation treatment.

When I first started, the idea of going every day for six weeks was daunting.  I think I’ve mentioned running the marathons…and how getting through each radiation treatment was like knocking out one mile towards the finish line.

However, there was this one incident during one particular marathon, I won’t ever forget.

I ran the inaugural OBX race back in 2006.  There was a lot of talk about how mile 20 would come at a bridge – which we had to cross.  All I thought about was getting UP and over that bridge.  Just get up and over the bridge, Donna, just get over it.

Now, a runner’s mental state plays a huge part in a race like this.  As I was running along, there, in the distance, I could see the swell of the structure and much like those glassy sort of mirages resembling shimmering water to a poor lost soul as they stagger across an expanse of hot, dry, desert, so too did that rise of the bridge flirt with my psyche.  It didn’t necessarily come off as helpful we first had to run along the loooooooong stretch which eventually led one to the part that starts to go…up.

This is the bridge.

I mean LOOK AT IT. Yikes.

But then?  I was over it!  I’d done it!  Only…that’s when I realized, wait.  I ain’t done yet.  I still have 6 MILES TO GO.  (I think this bridge now comes at mile 23 in the race – better.  Much better.)

Quite honestly, it was sort of an energy zapper.  I’d been so worried about the bridge I’d not thought beyond getting over it.  Sure I realized I’d have 6 more miles beyond it, but for whatever reason, accomplishing the bridge and then settling back into the one foot in front of the other for those last miles…well.  Head games.  We won’t talk about the Nor’easter that visited us that day either.  Okay, maybe we can a little.  RAIN.  WIND.  (35 mph at the top of The Bridge)  It boggles the mind.

Anyway, now having finished treatments, we did a little celebrating at the radiation clinic.  I took cupcakes.  (and forgot to get a picture)

These were the first faces I’d see every day when I came in the door. Always smiling.

You know them by now! The. Best. Nurses. Ever. They give you a certificate when you finish and you honestly feel like you deserve it AND a little whoop-whoop! to boot.

Pam and Ron Turpin, two of the nicest people! I looked forward to seeing them every day.

Back to the point about the comparison to the bridge…which coincides with the title of the post.  It Ain’t Over Till It’s Over.

What I’ve realized is finishing up my treatments has been a LOT like getting over that bridge.  I finished them, but I’m nowhere near done yet.  Meaning…the skin?  Sort of like the hair.  It decided to leave and when it decided to go, it went in layers.  Upon layers.  I’d been told this particular treatment regimen is tough to get through for lots of reasons.  As a result of a combo of chemo/radiation, I’ve been dealing with a particular radiation burn called “moist desquamation,” which is about as disgusting as it sounds.  I learned that sometimes, the effect of radiation is more intense with particular chemo drugs.  Like Fluorouracil.  I also read to expect two to three weeks of significant discomfort post treatment.  Emphasis on “read,” because none of my doctors told me this, I just sort of landed on it doing a Google search on “how long does this s**t last!?!?”

Therefore.  My days have been nothing but a cycle of wound care, dreading certain things we won’t mention, and hoping for a tiny bit of relief on any given day while drifting around the house.  My most challenging times have come home to roost this past week, without a doubt.

To say I’ve been hard to live with is an understatement.  For those of you local to us, and who see Blaine out and about, give him a hug, or a handshake – tell him he’s amazing.  Because he is.  He hates having his picture taken, but this man here?

Don’t let that glaring look fool you.

He has gone to the store for me more times than we can count.  He’s bought food he thinks I might want, talked to our pharmacist (Paige!) on my behalf, and has taken me to every single treatment, all the while listening to me bemoan my discomfort daily and often.

What we are enjoying in particular is my appetite is slowly coming back.  On any given day, I’m testing to see if I can tolerate certain foods like dairy, raw fruit/vegetables, which all were a no-no about a week or so ago.  So, yes, there is good in this, in that I’m starting to eat a bit more.

Also good – a writer friend of mine who lives in Tel Aviv shared something with me in one of the first posts I wrote about having cancer, and finding those five pennies.  She is a “new age Nun,” but what I know about her is she’s a loving, kind and generous person.  What she shared is as follows, “When I want someone or something to be protected, I always say: Chamsa chamsa. I like to say it twice to be on the safe side. Chamsa in Arabic means five, and five stands for the hand of God that protects you. So you are protected, and you are deeply loved.  Also, I believe that we have much more say than we know. Your body listens to you, and so does the universe/God.”

Then she sent me this gift – all the way from Israel.

This is a Chamsa, and this picture does NOT do it justice. It’s a beautiful piece created by Michal Negrin, and given by a beautiful soul.

Thank you, dear Lilac.  I hope you know how much this meant to me!  ❤ ❤ ❤

Recently, I also received a card from one of my fellow book club members, and she’d put a quote in it, which I love and it has become my mantra as I navigate this difficult time of recovery and healing.

“When you’re going through hell, keep going.”  ~Winston Churchill

I’m getting there.  I’m still going.

 

I’ve always loved this song, and what better way to end this post?

 

 

 

 

Five Days

In five days I will be done. 

Is it me, or does it seem like time goes a little faster when I skip a couple weeks in between these updates?  It must to some, because I’ve heard over and over from people I talk to…

“You’ve had how many treatments?  Already???”

Twenty-five of thirty, as of this past week.

A double amen to that.

A lot has happened in these two weeks.  Right after I posted my last update, when I was at the halfway point, the very next day, this:

The hair decided to leave. It had had enough.

I knew I’d lose my hair.  Well, sort of.  Dr. Smith said, “It might thin.”  I think what I’ve learned is most medical professionals don’t like to go off the deep end with all the negative details.  Even when they know WE know the outcomes given the experiences of family, friends who’ve been here and dealing with all of it long before.  Still, they sort of ease you into it all.  I now understand I will lose it all eventually but because beyond the “it might thin,” statement, nothing more was ever said until I inquired when I got the “pumpkin” this past week.

“Um, so, I’ve lost about half, will this next chemo round take care of the rest?”

Dr. Smith nodded, slowly.  “Yes.”

About two to three weeks from now, the last hairs holding on for dear life will bail and I will officially “look” like I have cancer.  I told Blaine, “Well, I reckon if I’m gonna have it, I might as well look it.”  So what did I do?  I bought…headcovers!  Are you kidding me?  Have you SEEN what they have?  Ladies, check them out, you might even want some for yourself.

I’ve already talked about all the other side effects I was having and continue to have, so, no need to trot down that path again.  Let’s just say, eating remains a challenge, but every now and then, I get a random thought of something I think I can manage.  The latest was this:

The Best Ever Vegetable Soup

This cup of absolutely delicious soup comes from Sherry’s Bakery.  You folks from Dunn reading this, know what I’m talking about.  I’ve had Blaine make several trips to get me a bowl, and wow, in that moment, I know it’s just what I needed and wanted.  But, lets face it, I can’t stand the sight of it at the moment.

I was also able to eat, of all things, this:

Okra! Okay, it’s a southern thing.

I know.  I know.  A lot of you – even on GOOD days – can’t eat this vegetable, but I can and do, and did.  Boiled.  With salt.  And it was good.   Was being the operative word.

Even though times have been difficult, as you know around one week ago I was dreading the week of…the pump.  Yes, when I thought about it, I turned just about the color of that pot of okra.  Funny thing.  When I went to Duke Cancer Center on Macon Pond Road in Raleigh and got “Pumpkin” back, that was one of my best days in a long time.

The Infusion area at Duke Cancer Center clinic. Little Dog is right out there, waiting on us in the truck.

 

What made it even more amazing was I’d had a pretty bad day on Sunday.  Severe abdominal cramping (from radiation) that was quite debilitating.

As far as the rest of the week?  Well, I made it.  I don’t ever want a repeat, I can assure you.  When I went back yesterday to get unhooked, it was without a doubt the best day and the worst day since I started.  The worst part was I’d been getting sick most of the week and the worst was Friday, and let me tell you what.  That’s all I had to say when I drifted through the doors of the Infusion Area, here at the the lovely Macon Pond Road Duke Cancer Clinic.

“Do you need fluids?”

“Yes, and I’m feeling pretty sick.  I haven’t been able to eat much this week.”

“Well, Dr. Smith is still here, let me speak to him and we’ll get you fixed up, and fixed up they did.  One liter of fluid and THREE anti-nausea medications later…

Angel Nurse accessing port. Hurry. Hurry.

Phew, within minutes, I was feeling much better.

By the time the nurses got me hooked up and the fluids were dripping in at top speed, the pumpkin?  Finished her cycle.  Woohoo!  I got to ring a bell in celebration of my last chemo treatment!  Giddy just about says it all.

Oh yes. We’re very happy!

But…enough about me.

I continue to receive the most wonderful mail.  Even hearing the mail truck has become as exciting for me as it is for Little Dog.  The cards, letters, and not to forget all of the online connections via FB, Twitter, and emails have certainly been uplifting.

Then, this past Sunday, a dear friend dropped this off:

Warm and snuggly!

Don’t get too interested.

Thank you, thank you, thank you, Lisa Fitchett from the bottom of my heart for this beautiful, warm blanket you made.  It did the job with that little cool front we had, and with the chills the chemo seems to bring on, it was perfect timing.  As you can see, the Bundle also approves!

I also captured some pictures of the radiation treatment room and the lovely caring nurses so you can see where I’ve gone each day, leaving the house promptly at 10:00 a.m. for the 10:45 appointments.

Two of the AWESOME nurses who’ve taken me through the radiation treatments. I’m sure there are wings under those blue smocks.

The Machine. It’s amazing really. That beige part rotates around me, like it’s on an axle.

The (very) hard table. Those blue things hanging at the back are “forms” used for different patients to position arms, legs or whatever properly. The angel nurses do their best to make you comfy. A special head rest…warm blankets. It’s as good as it can get, considering what’s going on!

The view from the table. I’ve studied these rose paintings a lot. I found faces in some of the background areas. One has to while away the time somehow.

Now it’s time to face the last week.  My radiation treatments will be less broad, meaning they’re going to shrink the field where I’m receiving treatment.  A winding down of the process, I suppose.

My hope is strong, my attitude fierce, but most of all, I eagerly await the outcome of all I’ve been through.  My radiation oncologist said it can take up to a year for this kind of tumor to disappear, and this means a year of watchful waiting.  More tests, more scary moments before knowing the results, but with Blaine, my family, and all of YOU, we will anticipate the best outcome.

Of course!