Milestone

For various reasons, I haven’t posted in a long time. Mostly it’s because sometimes, you want to forget about cancer. Who am I fooling? The truth is, you don’t. You don’t because you can’t. And you can’t because it never truly lets you go. It’s like the stain that won’t come out, forever imprinted in your psyche, on your body. You are never quite the same again after the day of diagnosis.

 I’m writing here and now because of a milestone, plus, I have something to share. First, the milestone. Five years ago when I was diagnosed, it seemed impossible this day would come. It’s a significant marker for cancer patients, one each of us yearns to reach. There’s a two year one as well. Let’s be honest, there are a ton of small milestones and goals in between and all along. Get the treatment plan. Get through treatments. Heal. Make it through the next scan. And the next, and so on.

The differences between the two year and the five year markers are this:

• Most cancers that are going to come back, usually will within two years or so
• After five years, one is even less likely to get a recurrence.

That said, most cancer doctors will never say you’re cured. I’ve read that even if the cancer hasn’t returned, it could. That even while you’ve completed treatments, and made it to five years, cancer cells can get left behind and could decide to grow again. This is the stain of cancer on your body, on your mind, and on the minds of those around you.

In the very beginning, through treatments and then post-treatment, most cancer patients (like me) live in increments of time between their scans. Every three months, off I went to get mine, and then waited anxiously for results. If/when they were good, I could go about life with a bit of ease. As the next one came up, my tension and nerves over it would grow. One learns to ride the cancer roller-coaster, gripping and holding on, tight as we can.

Over the five years, there have been good scans and bad. The one for the metastasis to my lung. The one where they thought I had bone cancer. (game changer) The one when lesions were found in my liver, and my diagnosis became incurable cancer. Since treatment for that, I have continued to be checked every three months. Several “stable” scans over the next couple of years got me moved to a stretch of four months. That happened in May of 2021, then a six month stretch was offered in January of this year.

Now comes a bit of an extraordinary news.

I had a scan this past Friday, July 29^th, the first in the new six month cycle.

I will admit to a major case of nerves, because after all, there was that extra three months and cancer does seem to have a mind of its own. I was cautiously optimistic. You can imagine my shock at hearing “there are some new spots.” My oncologist was quick to point out, “I’m not worried. Every July there are new technicians (inexperienced) who come on board to read these, I think you’re fine, but let’s get a liver MRI to be sure. It’s been a while.”

He wasn’t worried but I was, and stunned. His “I think you’re fine,” didn’t even penetrate. My mind did what my mind does, fast-forwarding to where are they, how many, what would my treatment be – Lord, not chemo again. That would make three times, and from the last round, I already have permanent side effects. Three years of stable, stable, stable, and now this? I was handed my check-out papers and out the door I went.

The girl at the front desk took to heart my oncologist’s instructions: “MRI now.” It didn’t matter he also added I come back in six months. He was certainly standing by his “I’m not worried,” but I don’t operate like that. 😬 I was WORRIED.

Three hours later, I was in the clanging/banging/knocking MRI machine for forty minutes. What a great way to spend a Friday afternoon. I was told it would take two to four business days to get a reading. I went home for the weekend to wait.

Duke Medical now has a new process. As soon as a scan is read/interpreted and notes are written up, they are released, to you, the patient, through a handy interface called Duke MyChart. I really like this interface for a variety of reasons – paying bills, passing messages along, etc, worrying over RESULTS. Yes, you get to read them before you’ve even been contacted by your doctor. That’s INTENSE and quite honestly, heart pounding. They have a handy, friendly “patient version” where you can hover your mouse over the medical terms and read the description. There is nothing to manage heart rate skyrocketing, or hyperventilation while one is looking for the statement, “concerning for metastatic disease.”

This is where it gets interesting.

First of all, when you get a scan like this, they discover OTHER things. Those are interesting to read about but, I won’t bore you with my other medical data. What I’m on the hunt for is the liver info. And what do I find? GOLD. The new spots – of which there is a cluster, “while technically indeterminate, these are favored to be benign given homogenous uptake and may be perfusional (related to blood flow) in etiology.” (Heart rate lowers, breathing slows)

And then – even better than GOLD is this: The remainder of the lesions, while indeterminate, are unchanged when compared to 2019 and favored to be benign given stability over time.”

What??? I asked the medical team to confirm my interpretation that the cancer did NOT metastasize to my liver. “Is that right?” I asked. “Did I interpret this right?” Of course they can’t/won’t say. What they said was as ambiguous as some of the readings of a scan where you get phrases like “not definitely seen,” or, “not definitively seen,” etc. They said, “There’s no way to tell, but the scan looks very good!”

Which makes me want to scream. I understand why they are cautious. They are in a practice that deals with a lot of death, a lot of uncertainty, and without a doubt, every single patient is uniquely different. Were those spots cancer at one time? 🤷🏻‍♀️ What I do know, at least from what I’ve read is this, lesions that are malignant don’t become benign.

Should I be doing the happy dance – you bet. But . . .

Another reason why it seems one can never fully escape from a cancer diagnosis has to do with something else I recently read. Cancer can hide. Cancer can be in your body in undetectable cells called micrometastases, or in the stem cells of the cancer. There you are, (like me) believing you are at the “no evidence of disease” (NED) stage, and further more, a metastasis may not have occurred AT ALL, which (IMO) is a game changer too as to my survivability. Right??? Yet, it can lurk like an alligator in a Florida swamp. Even if with chemotherapy, which targets and kills cancer cells that are in certain stages of division, it may not kill all cancer cells because that depends on what the cells are doing. I.e. if the cancer cells are not at the right division stage for that chemo drug, or not dividing at all, the drugs won’t kill them.

However. This is why many people get more than one chemo drug, and it’s why the doses are staggered out over several weeks. Like my last treatment which involved some pretty rough drugs like Cisplatin for 2 months, then switched they switched me to Carboplatin due to side effects, and I had Fluorouracil 5 throughout. Honestly? If those didn’t kill me, they SHOULD have killed the cancer cells!

Regardless of all the above, I feel so optimistic. I don’t have to go to Duke Raleigh Hospital for a scan until January, 2023.

By then, I will be entering into my sixth year, post diagnosis. Unbelievable.

“Well, it’s all right, we’re going to the end of the line.” 😉

Oh, August

As this month came with all of its anniversaries, I thought, oh, August, what will you have for me this year?

In the summer of 2019, my mother and I were fighting for our lives. In this picture below, she’s in hospice, her battle almost over. The date of this photograph is August 10th.

I was with her every day, and some were harder than others. On the day she passed, I remember standing outside her room and staring back at the window, knowing her body was still in there, yet she wasn’t. I pretended I was waiting on her to walk out of that place, tell me it had been a terrible mistake.

I went home, and took pictures of the moon that night.

Today, August 18th, marks the one year anniversary of her passing. August 26th, she would have been 84. ❤ 

One of my favorite pictures of her. Taken in August (of course) 2015.

Other “anniversaries” this month . . . in August of 2012 we lost our beloved little Yorkies, “the girls,” Bella and Kiwi. Bella, on August 2nd, and then Kiwi, on August 23rd.

It was August, 2nd 2017 I received my official cancer diagnosis, and began a rigorous treatment plan of chemotherapy and radiation that lasted into late October.

Oh yes. We’re very happy! Final chemo, October, 2017

They’re still there, helping people fight. The final radiation treatment, 30 in all.

Best card ever from my warrior sister, Keilah Goff.

                                                                          **************************************

Yesterday, August 17th, I was back at Duke Raleigh Hospital for my three month check-in. These have been ongoing since my diagnosis because the monster, a.k.a. as cancer, keeps wanting to rear its ugly little head up in new places, like my lung in 2018, and then my liver in 2019. When I started back on chemotherapy last summer for the liver metastasis, my final treatment was on August 23rd, the day after we had the service for Mom.

Since then, I’ve had three clear scans, November 2019, (PET) February 2020, (PET) and May of 2020, (CT). Clear scans in this case doesn’t mean there are no lesions, or nodules. Btw, everyone has these, unbeknownst to most of you unless tests are done and they’re  found, but it’s also important to note, most are benign.

I haven’t posted about the previous scans because cancer is tricky, and the results of tests are often a lot like riding the Tilt-a-Whirl, slinging you one way, good news! then the other, bad news! The results of a scan and what is said by the radiologists sometimes leave a bit up to interpretation depending on word choices. Things like “less conspicuous” and “less discernible,” or “not well seen,” can make you sit back and question, are they there or not? What does that even mean?

Basically, I decided to wait until I was one year post chemo treatment to do any sort of update because the longer things go with no change, the better. Yesterday’s scan shows “stability,” meaning the liver lesions seen have been there, and are unchanged. In the words of the radiologist to Dr. Smith, my oncologist, “their stability is definitely reassuring.” Are they cancer? We don’t know. The key word is “stability” because to the best of what I can gather no change means they could simply be benign.

Imagine. Some good news in August. Here I am looking a little tired, (typical writer appearance) but hey! Look! My hair came back. (!!!)

The capacity of the human will, the strength of a human body is never fully realized, until it is tested. 

LIGHT

For some time now, I’ve not lifted my head to see what’s around me, to notice much other than what needed to be done. I don’t need to tell any of you the past few weeks (months) have been hard, filled with sadness, and worry.

Many years ago, Blaine and I visited the Linville Caverns in the North Carolina mountains. It was beautiful. There were lights installed on the walls, showing us stalactites, stalagmites, and sparkling clear water with fish. There were ropes to guide us along to see all of these internal wonders of Mother Earth. Then, with a brief warning, the guide turned out the lights, plunging us into instant darkness. I couldn’t see Blaine beside me. I couldn’t make out one solitary object. I put my hand directly in front of my face. Blackness. The guide flipped the light back on, and the interior was once again illuminated.

Linville Caverns, NC Photo

Since my mother’s diagnosis and all that has transpired, there have been days when it was like being back in that cave with the lights out. I needed something to brighten my spirits, I needed a light switch flipped back on to show me how to move forward, how to get from Point A to Point B, and then to whatever point after that. Some way of feeling more myself, more lighthearted, more enlightened, the sense of waking up to a bright, sunny day after weeks of dreary rain.

I haven’t done an update on myself since June 17th, which was the day I began the first chemo treatment for this latest cancer diagnosis. Since that update, I’ve had three (hellish) months/rounds of chemo, through June/July and August. I was wearing my chemo pump when I gave my mother’s eulogy. That really felt like the darkest of dark days.

The final round, August 19th. Do you see determination? You betcha.

After the pump was unhooked August 23rd, I tried to not think about the CT scan for August 28th. When my oncologist called while I was still driving home, yep, I broke the law and answered my phone. I figured, get it over with, good or bad, you’ll figure it out.

I held my breathe, and he said,”Everything looks good. This is a good, clean scan.”

Whoosh. I resumed breathing and didn’t have a wreck. The new liver spots? Gone. The existing lung spots? Stable, no change since 2017. (they think these are scar tissue at this point) And even that pesky pelvic fracture that caused much anxiety in January and April has shown improvement and further healing.

This was the light I needed. I’m so grateful. ❤

 The light shines in the darkness, and the darkness has not overcome it. John 1:5

Back to the Frontline

I’ve hesitated giving everyone an update, but I know many of you are perhaps wondering what’s going on.

Here is some GREAT news! Mom left the hospital on May 8th, went into a physical rehabilitation center, left that on May 28th, and has been at home recuperating to the best of her ability. She FINISHED her radiation treatments this past Friday, June 14th, and now she is through, the next step for her will be an endoscopy – probably within the next month – to see how they worked. The hope is, obviously, the cancer is gone, or at least shrunk small enough she can be monitored.

I wish I’d taken a picture of her beautiful baldness, but I have yet to do that. She might appreciate that I haven’t – yet. 😉

As her chapter closes, mine begins – again. The hope for a “simple ablation” isn’t possible. Strangely, because of just how small those little spots are, they can’t do a biopsy, and they’re not operable, per the liver specialist. He lobbed it back to the bone doctor, and I, instead of waiting on them, went to see my medical oncologist, Dr. Smith. He’s been treating me for the past two years, and I trust him.

That conversation went something like this:

“Well, as you know, there are two spots, and they’re too small to operate on, and too small to biopsy. So, we don’t know what they are.”

“Right. We could wait and see.”

“We could, we could.”

“If we did that, how risky is it?”

“Well, there could be more we don’t know about.”

“Oh. And I guess it could metastasize, or they could grow quicker.”

“It could. Your cancer markers aren’t high, so I don’t expect they would grow too quick, but it could change.”

“What do you think they are?”

“I think they’re cancer.”

Decision made.

Today at 10:00 a.m. I will be at Duke Raleigh Hospital to start chemotherapy again. It will be a visit with my old friend, Fluorouracil (also known as 5 FU – interpret THAT acronym as you wish), and a new drug, Cisplatin. I will have this old friend again too:

Remember “pump’kin?” Called that because last time I was getting infused Sept/Oct timeframe.

This will happen – again:

Goodbye, lovely THICKER hair.

My taste will change, my sense of smell – I remember this vividly. My coffee, I LOVE my coffee, and it has become a new habit for me to swing by McDonald’s for a cup on my way to visit Mom. I’ve been SO tired from everything going on, it was the pick me up I needed. But, last time? Ick. I wasn’t able to drink it for a couple months.

Buh bye, Joe. I will see you in a few months.

I don’t know what all else might occur since I’m not familiar with Cisplatin, but some of the common side effects are, of course, low blood counts, etc.

My hope is this; I won’t feel as miserable because I’m not having radiation at the same time. I read somewhere in my many visits to Dr. Google that radiation intensifies the effects of chemo.

This go around there might be 4-6 treatments instead of 2, like in 2017. Dr. Smith said we’ll do 2, then do another liver MRI and see how they “spots” are responding.

I’m back to that Lady Macbeth saying, “Out, damned spot.”

So, this is what has been going on. I really appreciate all of the support, prayers, thoughts, and essentially all the good vibes from everyone! I have SO much to look forward to, and while I navigate this latest setback, I’m focused on getting through it, and passed it!

If I’m able, I’ll post updates, when I can! Thank you all for reading along, and supporting me!

Not too long ago . . . a rainbow came down from the heavens.

My Own Version of “It”

The beat of this drum has become somewhat tiresome, if I’m being truthful. Tiresome in that I don’t want the only thing I ever talk about is “it.” (reminds me of that fantastic book by Stephen King, read oh so many years ago.)

“It” is an appropriate name for the burden that is cancer. It’s one thing to deal with my own health, but we have Mom added into the mix now. This makes for dual roles – battling my own health issues, while trying to be caregiver to her. The complexities of this simply mean – I’m tired.

People ask, “How are you?”

I say, “I’m good, tired, but good.”

And you know what keeps me sane? Feeling good? Book events! I forget about “it.” I’m in the moment, I’m having fun, I’m laughing, discussing my books, discussing other books. Life seems normal.

Hooked On Books Book Club, Southport NC

Yesterday I was talking to a writer friend, and said battling my own cancer is like playing whack-a-mole. She didn’t know what that was. *You know who you are! It has truly become just like this arcade game – wherever it “pops” up, my doctors kill it. That’s the hope, anyway.

I had the liver MRI on Saturday. Sometimes you just know – it’s a feeling and it’s a bit of knowledge. 50-60% of people with this type of cancer see it metastasize to their livers. Those odds are pretty high, so it came as no surprise, really, when my oncologist called me yesterday at 8:00 a.m. and said, “There are two spots, relatively small, but they’re there.”

1.2 cm and 1.4 cm., each is about the size of a pea and they’re close together. Knowing those small details about them is helpful in an oddly, non-useful way. They are there, hidden away, causing me no pain, no sense of them at all. Like I’ve said before, cancer is sneaky. This is why so many people are late stage by the time they’re diagnosed.

What is tentatively planned, a possible needle biopsy, and then a simple ablation, a technique some of you may have heard of with regard to heart trouble, where they go in and burn the connections within the heart to get it back in rhythm. It’s similar with this for the tumors in my liver, but the expectation is to kill them off.

Changes are constant in fighting cancer, and while the recurrences are certainly disheartening, and may appear to offer a poor prognosis, there are still many options available to keep me filled with hope that there will always be an answer to the problems that seem to keep – ha – popping up.

John Hiatt’s CD, The Eclipse Sessions is a favorite I listen to while traveling to book events, or while running errands. Well, that, and Radney Foster’s, For You To See The Stars.

I chose this one for today, because the lyrics really fit. “Get up, get knocked down again, I ask for five, and you give me ten.”