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.”
It’s been a tough couple of weeks. First off, as of right now, my mother is in the hospital. After her 4th chemo treatment last Thursday, (out of 6) she went straight downhill and never recovered like she’d done before. She’d become unable to get up on her own, etc. Very weak, shaky, dizzy, you name it. (She’s also finished 18 of 28 radiation treatments.)
Monday when we went in for her radiation, and she was still feeling so bad, I went across the hall to her medical oncologist offices – where she gets her chemo – and told them they might want to assess her. They drew blood and her counts were so low, they decided to give her transfusions before her next chemo. That was scheduled for yesterday, May 1. However, they only gave her one bag because during the transfusion, she had shortness of breath.
So, she was admitted to the hospital for observation, fluids, blood, tests, and all the other “fun” stuff that happens in that place.
I would also like to add that getting INTO a hospital is as hard as breaking OUT of jail. It was likely more complicated/difficult because this hospital had no beds. Fresh out. That meant we had to go to the Emergency Room, and we ALL know how those trips go. Hours. Hours. Hours. We arrived at 3:00 and got into a room at 9:30. I think. It’s all a blur.
Waiting, waiting, waiting in the Emergency Room area.
She is being treated for neutropenia. She will need more blood. They are doing other tests. Her heart rate was pretty elevated last night – while she was just lying there. (between 110s and 130s – fluctuating) The nurse said it could be dehydration, but they’d given her fluids when she started the transfusion at the chemo clinic – so, I don’t know.
Bottom line, she’s where she needs to be, as many who were around her, and saw her, thought she was not doing well at all. It was apparent something wasn’t right. Hopefully she will feel much better when she’s able to leave. We will then have to resume the treatments, but I’m hopeful they will provide her with a medication to help keep her blood counts from bottoming out again, and I’m sure they will.
As to my own situation, most of you don’t know this past January we had a “bone cancer” scare. I sustained a fx in my pelvic area in September 2018 while running. Because of radiation, everything is different – check out osteoradionecrosis if you’re into reading medical documentation and seeing cool radiology pics.
When I went in for my PET scan in January, I told them they’d see this injury. They did. That became, we don’t know if it was caused by cancer or radiation. Off to the sarcoma clinic I was sent. The doctor there looked at the x-rays and said, “I’m not worried and here’s why.” (Talk about relieved.) Some of what he talked about how to do with that long word above. Some of it was about the fact I was no longer in pain. It was excruciating to walk when it happened, but after about 8 weeks, it got better. The main point, no pain at night which is what bone cancer is known for.
He said, “I’ll see you in three months.
I had the follow up PET scan on April 19th and went back April 23rd for the results. There is good news/bad news. It started off as bad news/bad news, and by now, any improvement in a result – well, I’ll take what I can get. Initially, he said, “Remember when I said I wasn’t worried? Well, now I am, and here’s why.” He said the fx hadn’t healed any more. He said the uptake on the glucose tracer was slightly more elevated – therefore, what he’d avoided in January was now back on the table – a bone biopsy.
What can you do? Not much. But then, there was a new issue. A new spot on the liver. Uptake on the tracer as well. There has been no liver involvement at all, up to this point. It’s truly like what’s next??? BUT – the tiniest sliver of good came when I was called by the sarcoma clinic and told the bone biopsy scheduled for May 3rd was postponed until they get back results of the liver MRI – yet to be done. I think this is because there is still the feeling that whatever happened with that fx may truly be a radiation thing. From what I’ve read, bone cancer is very painful – it would keep me up at night, plus it’s in an odd area, evidently.
Did you see this picture. (I deleted it when I realized it hit my author page, not my personal page on Facebook. I’m trying to keep those two things separate.) The look on my face says it all.
Those doggone blue bloomers they give you for xrays – fashionista! NOT.
That’s where things are. Liver MRI on May 11th – next Saturday. This is why I’ve been low key on social media. So much going on, yet, it’s often when I listen to music I find my way to a better, calmer peace of mind.
There is something about this particular song, a favorite for sure. And, even while it’s not relative to anything going on, I think what entrances me most- aside from the melody – is the message of enduring love.
We’re called warriors. That word and others like fighting, survivor, and journey, are used to describe this experience and never before did I fully grasp it until that day in 2017.
We are battle scarred. In my case, I’ve been tattooed, four permanent little bluish dots which pinpointed where the radiation machine would target. That’s another word to add to the repertoire – target. Like throwing darts, we wanted those beams to hit the bullseye and kill the cancer. Kill it, not me.
I have scars from the radiation burns, from lung surgery, and now I have this one from the skin cancer recently removed. In the grand scheme of things, this was easy-peasy.
“Oh, this little ole basal cell skin cancer? That’s nothing,” I declared to the dermatologist as he stitched up my leg. (I tell you though, skin cancer is nothing to fool with. What I had was literally about this size –> O, if that. That turned into taking out that chunk of my leg like what you see below and eleven stitches.)
That “dip” will go away – eventually. Hopefully before shorts season!
The longer you talk cancer, experience cancer, deal with cancer, the more you realize you are in a war zone, albeit self-contained. There are the inner scars too. These are memory scars, the ones formed over PET scans with outcomes we don’t want, the idea it could resurrect it’s ugly little presence any old doggone time it wants. Our future is at stake until we pass the magic time of two years and five years. At five years cancer free, none of us have any more chance of getting it again than the rest of the population who’ve never had it.
I do my best to ignore it. I’ve gotten pretty good at it too, as these pictures show.
Attended the Women’s National Book Association BibliofeastHonored a cherished friend . . .Accepted this award at the SELA/SCLA Annual Yearly Conference Thanksgiving at our house with familyDecorated the tree . . .Somebody doesn’t like their reindeer horns . . .
You get the idea!
I have concluded I am proud of my battle scars. I am glad I have them. The fight is over for now. I am completely cancer free – again. I will get through PET scans, and continue to look forward, never backward.
A friend of mine wrote a comment on my last post, and in reading it, I looked at the date and realized it had been a while since I wrote anything about what’s going on. To be honest with you, I guess you could say when it comes to that, picture my face like this:
Enough already.
It’s been almost three weeks since the surgery which went as expected. No surprises. Wedge resection was done, wore a chest tube for about a day, and was quite (very) happy sitting propped up in my hospital bed, with a morphine pump and other opiods dripping into the IV. It was like a trip back to the 70’s, all psychedelic and woo woo.
The nurses asked, “What’s your pain level, zero to ten?”
“Zzzzzeeeerrrrooooo,” said I, with a loopy grin.
I checked out the next day, and since then have been at home, recovering. Actually to say recovering is a stretch because the overall effects of the actual surgery weren’t too bad. The worst came the first two days after as the general anesthesia wore off. I drifted about the house feeling zoned, out of it, really. Then, for the following week I prayed I wouldn’t need to sneeze, or cough. Beyond some oddball annoying muscle spasm that created a sharp pain when I breathed in too deep, and what I’ve called the mad itch from adhesives on the dressing, I have felt pretty good.
I saw the surgeon October 9th and got the stitches out. That was when I heard about the pathology of what they removed. A bunch of staining was done to try and identify cells, some squamous, some with basaloid features, but as seems to be the case with the metastases I get, a hodge-podge of crap that is poorly differentiated, and morphing into unknown . . . cancerous stuff.
Ick.
Here’s what I’ve learned. When you have cancer, you tend to listen very carefully for the positive news while analyzing every word coming out of a doctor’s mouth.
So, while I heard about all those nasty cells, I also heard him say something about Stage I.
I said, “So this is Stage I.”
I think he misunderstood my question. I was trying to understand if my lung cancer was Stage I while I realized my original cancer was Stage IIIB.
He said, “Oh no. You’re Stage IV because of the metastasis to the lung.”
Then he followed up with a couple of comments that sounded encouraging. One was it was better for me to come in with this now versus having had it when the original, primary cancer showed up. The second thing he asked was how long it had been since I was diagnosed.
I said, “Fourteen months.”
He said, “Well this may be it. The longer you go without anything else showing up, the better.”
I got to thinking about those other little spots, and we discussed them too. He showed me they are in both lungs. (refer again to that girl pictured above).
He said, “I would get another PET in three, no longer than four months. And we can always go back in and remove that left lobe, if they’ve changed.”
“What about the right lung?”
“Well, you have enough lung function we could remove some of it, or it could be treated systemically with more chemo. But I’d not recommend that for a few weeks, until you recover fully from your lung surgery, and that’s really Dr. Smith’s call.”
I went home and got to thinking about the doggone spots. For some reason, I thought he was the first person to bring them up, but then I recalled I’d started off with “nodules” already on my lungs (and liver) when I was first diagnosed last year. That’s why I was sent to an oncologist, pronto, and with everything going on, I had not thought to look back at my previous scans.
I went into the Duke portal and checked. Sure enough, all the way back to the original PET scan from August 2017 there is a mention of nodules in both right and left lungs. This is good news! (strangely) Why? Because I’ve had these spots he’s pointing out all along, and I’ve had a total of three more PET scans, and the spots haven’t changed. The one they took out was new as of the June 2018 scan, hence his comment, “This may be it.”
Let’s hope and pray it is!
In other news – remember my title on the last post? (Running with Lung Cancer)
Weeellll, I won’t be able to do that anytime soon. I suppose that’s what I get for thumbing my nose at the Universe.
Getting radiation to the hip/pelvic area can cause weakened bones. This was a risk, but I suppose it’s hard to really know you’re at risk without going through yet another scan for bone density. So, I was out on a run and immediately felt pain and in hindsight, I should’ve stopped right then. I didn’t. My thinking was I could run through it because over the course of the years I’ve been doing this, I know that weird pains show up at the beginning of a run, and most go away within half a mile or so. So, I kept on. It stayed with me the entire time, which should’ve been a big red flag. Once I finally did stop, I knew I’d made a mistake. So, I’m sidelined with a pelvic fracture, the type that needs nothing but time. It’s going on six weeks this coming Tuesday, and while there is still pain, it’s much better.
But – I’m not done YET. (!!!)
Let’s add some icing to the “what else could go wrong” cake.
A week ago today, I went to a dermatologist for a possible . . . skin cancer. We’ve all heard the saying “it comes in threes,” right? Is “it” karma? IDK, but whatever “it” is, mine apparently comes in fours.
I’ve had a “funny” area on my lower right leg since chemo ended last year. Actually, I thought this tiny wound was some odd thing my skin was doing because of the chemo since it showed up right after I was done with that treatment. It’s been there changing, doing it’s thing, bleeding now and then. Since my Dad had skin cancer, and I inherited his olive complexion, I thought, the way my luck is going . . .
I went to see a dermatologist a week ago. They took a biopsy, and the pathology on it will be back in about two weeks, so that was a Charlie Brown moment, as in good grief!
Let’s see, what else . . . kidding! Because, yeah, that’s enough, already, isn’t it?
Despite all this, you wanna know exactly how I feel?
Those of you who live in my neighborhood, yes, that certainly has been me you’ve seen jogging along the streets recently. You might have thought, but, wait. Didn’t I hear she now has . . . lung cancer?
That would be right too.
I asked my oncologist about running weeks ago, and his answer was “Yes, you can run!” That made me really happy. So, that’s what I’ve been doing. I figure if I’m in as good a shape as I can be – considering – I will recover faster after surgery.
Which is what I’m here to talk about, recovering from the surgery I mentioned in my last post. I went to see a thoracic surgeon yesterday.
By the way, in case you missed that Instagram post I did on Monday, here’s the picture I sent out.
Talk about timing. These two pieces of mail arrived together. This actually made me giggle but maybe I have a weird sense of humor. (French Sojourn, you can see I took your advice – thank you)
Back to the surgery visit. It was really enlightening and what I hopedand prayed for will happen. The doctor is David White, and while I was having a pulmonary test, the nurse said, “If I had to have any sort of surgery on my lungs, Dr. White is who I would want. He’s the best and I’ve worked all over the place.”
I love it when nurses volunteer tidbits like that. Either way, even after meeting him I was still curious so I Googled his name. Here’s a short video taken about three years ago where he introduces himself:
I really like him. Like my oncologist, he was thoughtful and caring. It showed in how he talked, explained things, and the time he and his PA took.
We started off by comparing our fitness watches. Ha! We had very similar looking running watches – same color – black/lime green. Then we looked at the PET scans I’ve had. He can’t be 100% sure of what type of cancer it is until they biopsy it. At this time however, because of the characteristics (round), he believes it’s actually a recurrent cancer and that the original cancer metastasized to the lung. My oncologist has said this would be a highly “unusual pattern.” (I’ve always joked how I can’t ever just have a common cold. If you knew my entire medical history, you’d understand what I mean.)
Dr. White said, “I bet when we look at the PET from January, we’ll see it.”
He flipped to that scan and scrolled through, but, we didn’t see anything.
He said, “Huh, that’s interesting.”
At any rate given the placement, back of the lower left lobe, (he placed his hand on my back midway to indicate about where it is, whereas all along I’ve been thinking it’s up front) he still thinks it’s recurrent. He also talked about the shape – round – and said other lung cancers tend to not be that shape, meaning the shape points to recurrent.
He scrolled through the scan and showed me other “spots.” I’d not heard about other “spots.” I honestly can’t recall how many there were, but I’d say 2-3. His PA said, “these are so small we wouldn’t be able to find them (during surgery), but we need to watch them, and see if they grow.” The watching will come from PET scans.
For the surgery it will be laparoscopic (so relieved), and he will do a “wedge resection.” This will mean cutting out the nodule, and some of the good tissue. He said they literally cut it like a wedge. I like pictures, so I went out and found one. Like this, but in that lower part of the lung.
There will be a tube in my chest for about a day – and that will be removed before I leave. This is the best surgery for maintaining most of the lung tissue. Regardless, your body has to adjust to less lung capacity, but this is the optimum for keeping the most of the lung.
He said I shouldn’t have to stay more than a night, maybe two depending on how things go with the chest tube and its removal. At home, recovery beyond that is about ten to fourteen days. He said one of the hardest things is getting over the anesthesia, and the pain. Still, all this was right in line with what I’d been hoping for – minimal hospital stay, and a pretty quick recovery.
He then said, “Once I’m in there, if I find out it’s actually a primary cancer, that will mean a larger incision (still laparoscopic) and a lobectomy, where we would remove the lower lobe entirely.” It means a longer hospital stay – maybe an extra day, and a few more days tacked onto recovery.
So, that’s the deal. The surgery is September 24th. This was the date I was hoping for because of the SIBA Tradeshow in Florida, and the Stanly County Library Annual Friends of the Library meeting where they’ve sent out 250 invitations.
Not having it ASAP doesn’t mean increased risks. It was sort of funny because when I asked about that, and I was prepared to start emailing people to say, “I’m real sorry, but I won’t be able to make it,” he said, “No. It doesn’t make a difference. If it grows, it will only make it easier to find.”
It still sounds encouraging and hopeful despite hearing about the other spots. We’ll just have to keep the faith they won’t grow, and hope from this point on I’ll get clean scans.
As always, I find myself listening to certain songs, and the lyrics to Seals and Crofts’ We May Never Pass This Way Again, are fitting.
“Cast away our fears, and all the years, will come and go, and take us up, always up. . .”
This actually made me giggle but maybe I have a weird sense of humor. (French Sojourn, you can see I took your advice – thank you)
DEAR CANCER 