For this happy season, we are not going to talk about cancer. Instead, I am going to help you with your holiday shopping. Who doesn’t love a good book? Featuring the wonderful authors of Simon Publishing is a true pleasure. Joanne Simon Tailele Simon Publishing LLC
All of these books by Simon Publishing LLC are available on Amazon.com
Check them out. Buy them for a gift – for others or for yourself.
Chemo treatment #4 was this past Tuesday. Even I am surprised at how well I am doing. The first day or two after treatment is a breeze. By day three, the neuropathy starts kicking in. It baffles me what parts of my body have a reaction. Why not my arms, or my back? Who knows. The neuropathy is only in my legs, especially my knees, making me feel wobbly and unsteady on my feet. Reluctantly, I secured a walker to use around the house when I am too wobbly. But with our condo being so small, most of the time I can walk holding on to chairs or tables. Doesn’t do much for my ego to look at a walker. Makes me feel old.
Next steps are two more chemo treatments before 18 radiation treatments. I spoke with Dr. Sam, my surgical oncologist last week and asked about guarantees. Of course, he can give none. But he did say that they would do another pet scan after the last radiation to compare it to the original one after the surgery. If that is clear, then I can cautiously say I am cancer free. The bigger test is 6 months after that (so around November 2023.) If cancer has not come back by then, I am pretty home-free for the rest of my normal life expectancy.
Most of my fears are gone. That is HUGE. Remember how terrified I was? Other than the unknown of the radiation, I now know what to expect with the chemo. I am stronger and braver than I was when this started. Can you believe that was over four months ago? (Surgery was in July) I am curious about when and what my hair will look like when it grows back in. I have hears that it could be any color or texture and completely different from what I had before. A new me???
People do love my wig and most do not even know it is fake. In fact, my nurse double-questioned what chemo I was taking because “you shouldn’t have any hair.” I don’t – I just have a really good wig. Life goes on.
I am eternally grateful for my wonderful family that takes turns coming each “treatment week” to make sure I am not alone while Tai is at work. And what a great opportunity to spend time with my kids. First was Candy from Ohio, second was Amy from Virginia. Then Dru and Cybil from Colorado. This week was Terri’s turn from Miami. Eliana will be here the week of my Dec. 6 treatment from Virginia and then Terri will be back for the last one after Christmas. I have the best hubby in the world too, who takes over all the stuff I would normally do around the house, like the cats, the laundry, vacuuming, etc. I am blessed beyond reason.
I would love to hear how other people are dealing with cancer or any other infirmity. Helping each other to cope is 90% of the battle. We need the village. Feel free to share.
I hope to get back to more writing soon. I have not done much since all this began. Now that I am more confident that I will have a future, it is time to get back to my stories and helping others get published. I have not given up my business, Simon Publishing LLC, so if you need help publishing that book, let me know. I am here for you.
Happy Thanksgiving. We all have a lot to be thankful for.
Chemo Treatment number three. Done. Exhausted, but that is all the side effects so far on day three. What I really want to talk about is this damn mirror. Most of the day, I do not see myself. I go about the day with a beanie on my bald head to keep it from being cold, and often forget all about it. Or I put a hat or wig on to go out. All fine.
But it’s this damn mirror. every time I walk past it, I am shocked again at what I see. It screams “YOU’VE GOT CANCER.” at me in bold letters. And it all comes rushing back to me. Will I ever be cancer free? Will all of this really work? Will I ever get my strength and comprehension back? It feels like such a long journey to the middle of May until all my treatments are done. And I am so tired. And these stupid mirrors, remind me all the time.
I never thought I was vain enough that this would bother me. And I still don’t think it has anything to do with, do I look pretty. Hell, at my age, who is pretty? No, it is the reminder of my condition that shouts at me. It taunts me with: you know this is not going to work, it’s going to come back, why are you filling your body with poison? So I fight these thoughts, try to push them out of my mind. And I succeed for a while — until the next time I pass a mirror.
My son and daughter-in-law are here this week to watch over me. They are wonderful. Not that I need anything done for me, but it is nice to be waited on (even more than Tai already does) and to have their company. I am grateful I am not really sick and they had to do a lot for me. This is better. Maybe this is my silver lining. That I get to spend time with my kids which would probably never happen otherwise. So I will take that for a win.
Yes, this is how I feel today. But I am still breathing and kicking. So don’t give up on me and I will try not to give up on myself.
I had my second chemo treatment this week. So different from the first one. No tears, no trauma. Going in knowing what to expect makes a huge difference. Side effects have been almost non-existent. I have a little nausea, some headaches that come and go and I am feeling really tired. Even putting out this blog post is a challenge. But mentally, I am much better and feeling more optimistic than my last post. My daughter Amy is here to take care of me this week. I am so blessed to have family. Perhaps my optimism has something to do with following a major Hurricane. I find it hard to feel sorry for myself when I have a roof over my head, electricity, and water when some people have nothing. It is all relative, isn’t it?
Hurricane Ian roared through here, bringing massive damage to homes, businesses and cars throughout southwest Florida. We were spared any of that. From the safety of our little condo, we were untouched. Only a few inches of water on the parking lot that quickly disseminated. Too many people were not so lucky. Fort Myers Beach is a disaster. So are Sanibel Island, North Port and Port Charlotte. Isles of Capri is almost directly across the street from us and they suffered a lot of damage.
But, back to me. I lost all my hair this week. In less than a week, I went from a full head of hair to really thin and bald spots. When it started to fall out, I was obsessed with running my hands through it to see how much hair would be in my hands. I couldn’t seem to stop, which I am sure hastened the demise of it. When the bald spots started, I knew it was time to shave it all off. And yes, I cried through the whole head shaving. But now that it is done, I no longer have anxiety about it. I bought a lot of cute hats and have a wonderful wig. I noticed one thing. My head is always cold without hair. In the house, the A/C blows right on it. I need to wear a cap at all times. We found some nice soft skull caps that keep me cozy and they also fit under my hats to protect my gentle scalp. Most of the hats are bucket hats, but I also have a baseball cap I wear with a fake ponytail which is kind of fun. And the wig looks just like my real hair. So I am in good shape. You wouldn’t even know I am bald as a billiard ball under that.
Since my treatments are every three weeks, I will try to always post after each treatment and keep you in the loop.
For other cancer survivors, I would love to hear how you are coping with this. Are there tricks to the trade that help or hinder your progress?
This quote really touched me. I have been feeling anything but brave, strong or smart. In fact, I was wallowing in my fears. Regardless of all the platitudes and words of encouragement everyone has given me, I was being consumed by fear.
Well, I made it through my first chemotherapy treatment on Tuesday. And yes, I was a blubbering mess through the labs, the consult with the nurse practitioner, the insertion of the needle into the port, and even up until the first med was pumped through. But eventually, things calmed down (most likely in part by the Benadryl), but I realized I was not in pain. Nothing terrible was happening to me. I just sat there and let the meds do their thing for five hours. Bottom line is, I made it.
I went in and out of some pretty weird dreams, but they were not scary, just odd. And when I got home I was super tired. And so glad to have my oldest daughter Candy, here from Ohio to look after me so Tai could work this week.
Today is now Thursday. My symptoms have been extremely mind. A tiny bit of nausea that is quickly remedied with a pill on my tongue. I’ve had some slight stomach cramping and a little tingling feelings in parts of my body, but very mild. Nothing I can’t live with. Much better than I expected. Today we went out shopping, and although I was tired when I got home, it was good to get out. So far, no hair loss (one of the things I am dreading most). Supposedly that could start as soon as next week.
What I really want to convey here is I made it through the first treatment. I AM now braver and stronger and smarter than I was on Monday. Now I know what to expect when I walk through that door to the treatment room. I doubt there will be any more tears, at least not over that.
I am still fearful of the side effects that will happen with more treatments. But I don’t think I am terrified anymore, and that is a huge step forward. In fact, I don’t think I have cried since yesterday. And that was very brief and private. I am making it through.
If you are going through something like this, whether it is cancer or something completely different and not feeling brave, strong, or smart, hold on. It will come. I can’t promise you when, but together, we will make it through to the other side.
Feel free to share your thoughts and what you are going through too. Let’s do this together.
Am I handing this well? God no. What happened to “I am Woman, I am strong?”
I am weak, a basket case, crying every single day. Now when someone says to me, “You are strong, you’ll get through this,” I want to throw something at their head.
I do not FEEL strong. I am crumbling inside. I remember once when I said those words to one of my daughters. “You are strong, honey, you’ll get through this.” And her answer was just like mine, “I don’t feel strong.” What she was really saying was, I NEED YOU to be strong for me. Now I get it. Sorry, honey.
Thank God for husbands like mine. He is gold. As calming as Dr. Sam is, Tai is my rock. His arms don’t stop the tears, in fact, they seem to open the floodgates even more. But they are the only place I want to be. Last night I woke him up at 3 a.m. because I was having a panic attack. My mind was all over the place. I didn’t want to do this. (the chemo) . What was I thinking agreeing to put 5 hours worth of poison in my body? It reminded me of old-time doctoring with leaches or bleeding. He held me and comforted me until I was calmer. I can’t promise him I won’t put him through it again.
I am also blessed with a loving, supportive family. My children are amazing. My brothers and sister-in-laws are fabulous. We are a big family. And I love every one of them.
So, now we are almost at the beginning of the end of my journey. The Chemo. First treatment in 3 days. I hope I have the strength to walk through the door. I had this “thing” inserted under my skin called a port. It is supposed to be where all my blood draws and chemo treatment will happen.
I’ll admit. I am afraid. I am afraid of all it. The chemo, the radiation, losing my hair (I know that is frivolous, but I still feel it), of being sick, of not being able to do the things I love. To die. Yes, it could happen. There are no guarantees.
For the first time in my life, I find myself saying “I just can’t” to just about everything. No, I can’t go to the office. No, I can’t meet my friends for lunch. No, I can’t work on your book. No, I can’t write a single legible sentence in my own novel. I can’t. I can’t. I can’t. I needed to stop that.
I have learned one thing. It is okay to lean on others. It is okay NOT to be strong. It is okay to cry. My yogi-daughter told me I needed a positive mantra, to repeat over and over, especially when I am in my quiet zone first thing in the morning. She helped me to recall I already HAVE a mantra. I just did not know it was called that. It is a Bible verse I have used when things got tough before (and they have) since 1972.
It is Romans 8:28 Everything works together for good for those that love and serve the Lord.” EVERYTHING – even cancer.
So every morning, I repeat that, do a deep inhale, hold it for 5 seconds an do a slow exhale. And I repeat that a minimum of five times. I am calmer.
I think I am ready to face the future. Do you have a mantra? What gets you through the hard times. Share them with us if you can.
Life’s up and down from the time you get here to the time you leave.
I felt great after the surgery. Went home the next day. No pain, no bleeding. Surely Dr. Sam was wrong to be concerned. The discharge instructions were not to go back to work for 4/6 weeks? But me? Do I listen? Have I ever?
“I am woman, I am strong.”
Life can be such a mean trickster. So I didn’t wait 4/6 weeks to go back to work. Most of my work is at home in front of my computer, but I was also working part-time in an office. I could do this. Why not? Did I say earlier my surgery was in August? (Sorry, senior moment) It was July 20, not August. Whoops.
Senior memory aside, I felt fine. Why not go back to work? So on August 1st, I went into the office. I started feeling “off.” Couldn’t quite put a handle on it, but decided to call it a day at noon. By the time I got to my car, I knew I was in trouble. Dizzy. Weird random thoughts. What was happening to me?
I made it home. Whew!, Did not run anyone over. (At least that was one good thing about “off-season” in Florida. Less pedestrians to run over.
Hanging on the stair rail, I managed to climb up to my 2nd floor condo. But before I could rest, I had to take care of my precious babies.
I leaned over to fill their food dish, and boom, next thing I knew I was on the floor sitting in a pool of urine (mine) cat food (theirs) and water (theirs). I know I lost my balance. I know I hit my head. I am not sure if I passed out. Wonder Woman that I was, I crawled to the bathroom and cleaned myself up and made it to the couch.
I am no rooky, I went through the 70’s. I know all about roofies, and uppers and downers. But for the next 24 hours, my mind was on overdrive. But none of it made any sense. Words and phrases, totally unrelated to each other raced through my mind at 100 miles an hour. This was NOT a good trip.
By the next day, sweet hubby Tai, had enough. “You are going to the ER.”
“No, “I balked. They will just say my vitals are fine and send me home after hours and hours. I didn’t win that argument.
The ER seemed to only hear one thing. I fell and hit my head and MAY have passed out. My God. Maybe I had a stroke, Maybe I had a concussion. Do a head scan. Do an MRI of my brain. They ran me through the gambit. No stroke. No concussion. No brain damage.
But the blood test did reveal something. I had a UTI infection. And that could have caused the dizziness and crazy thoughts. Seriously? I never knew that. And I had no other symptoms.
So if having surgery with “mushy parts” was not bad enough, now I had a UTI as well? Thank you, Universe.
Was that enough to throw at me? Nope. Let’s see what Wonder Woman could take.
While there, they discovered an abscess on the “cuff” that once held up my uterus. Not good. And it was going on day 3 in the hospital. I’d had four different IV’s in my arms and hands, in addition to other blood draws. I looked like an addict with my black and blue arms.
Dr. Sam had me transferred via ambulance from the hospital near my home to “his” hospital an hour away where I had my surgery. I was glad. Dr. Sam would take care of me. Dr. Sam would say everything will be fine. When he arrived with the pathology report, he was not smiling. “So sorry. It is not stage 1, It is stage 2 with 70% clear cell carcinoma.” That “mushy” was the clear cell. Definitely will need chemotherapy and radiation. Not the news I wanted to hear.
So to sum it up:
Now instead of Stage 1 cancer that would all get cut out —
I have —
Stage 2 (with most of it cut out)
Clear cell carcinoma
Come on Universe. Can you hit me with anything else? Well, YES. It can.
By the time I left the hospital (the 2nd one) I’d been in a hospital for five days.
Was I handling it well? Hell no. Am I now? Hell no. By now I am crying every single day.
No matter how illogical thoughts can be, sometimes they still haunt you (or me at least) Here is one example.
Tai and I were getting gas on one of the many trips back and forth to doctor’s appointments. I was sitting in the passenger seat while he pumped the gas. I watched a young man come out of the convenience store and head to his car. He was practically bouncing, at least that is the way I saw it. And I thought: “Why does he get to be happy, bouncing along like that, not a care in the world? Why isn’t it him instead of me?” Now, I know that is selfish and outrageous. I am not that kind of person. I wouldn’t wish this, or any illness, on anyone. But truth be told, these are the kind of random thoughts that run through my head. Maybe they run through yours too. If you have an experience you’d like to share, (about this or not), maybe it could help you, and me and whoever else is reading this.
Hope is being able to see that there is light despite all of the darkness…… Unknown
Dr. Sam. There are no words. Have you ever met someone that his or her very presence eased your fears? That is Dr. Sam. He is my oncologist. He walked into the exam room and said, “Hi, I’m Sam.” We asked if he wasn’t the doctor and wanted to be addressed as so. His answer, “I’ve been Sam a lot longer that I have been Doctor…. Then he took my hand. He did not shake it. He held it. Firm, but soft, I felt all anxiety begin to drift away. I had no logical reason to feel this way, even though I had read all about his impressive credentials. That wasn’t it. There is a aura about Dr. Sam I cannot explain. He made me believe I could beat this. And as my daughter, said, he wasn’t hard on the eyes either.
We got down to business and he explained the game plan. He told us why he would do the surgery this way instead of that. He spoke to all of us, me, Tai and daughter Terri on a FaceTime call. He answered all our questions and explained things we didn’t know enough to ask. And he made me smile. He wanted to do laproscopic, but not robotic. I asked why. I thought I was so smart for reading up on the latest surgical technology. “Because,” he said, “You’re little. Robotic surgery would make bigger incisions and you don’t need those on your tiny body.” Me, little or tiny? Nobody had called me that in fifty years. Two points for Dr. Sam.
“You’re going to be okay,” said Dr. Sam. And I believed him. He concluded the meeting and stood to leave. Then he reached over and hugged me, warm, sincere, like a life raft. Hubby and I left, hand-in-hand. In the car, Tai looked over at me and asked why I was crying. They were tears of relief. The weight was lifted off my shoulder.
And no more
Surgery was set for August 20. Sam would do the operation. And I was sure I would be fine.
I was going to put the surgery on a separete post, but time is catching up to me. I’d like to have you caught up before my first chemo treatment.
As they say, “The surgery was a success …. but (don’t you hate those buts?)
I thought I was relatively calm going into the surgery. From what my daughter and hubby said, I was far from it. Apparently, the medication to make me drowsy before the actual anethesia loosened my tongue. I am told I cried and cried, hung on to them, and gave them instructions on what to do after I died. I remember none of that. (Just as well)
Dr. Sam made his rounds the next day and explained that things were slightly more complicated that he anticipated. He found some parts that were “mushy” (his words, not mine) and we would have to wait for the pathology report, but now he expected that I would need some chemo and radiation. What? I thought it was going to be easy-peasy – take out the stage 1 cancer and I’d be cured.
As Lee Corso from College Game day would say, “Not so fast.”
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If you are old enough to remember the beginning of Pac-Man, you will understand the chomping sound over the music that rattled your brain. It was the 80’s and it was addicting. And it apparently has survived all these years. Not a good sign for me
In mid-May, I began to bleed and had tons of stomach pain. This continued for weeks. First a trip to my gastroenterologist, then the ER, then a referral to a GYN.
I first found out I had “C” in June 16, 2022. Perhaps it was the shock, it didn’t really register. The GYN nurse called and said I needed to come in because of the results of a biopsy.. When Tai (my hubby) and I got there, the doctor nonchalantly handed me a piece of paper with the words, “You have cancer. You need to see an oncologist.” That was that. What???
From that moment on, every time I thought about it, I could see that little Pac-Man guy chomping away at my insides. Relentless.
Chomp, chomp, chomp, chomp .
My dear friend, Pauline told me to visualize a zapper gun zapping them out of existence.
Zap , zap , zap .
The problem was the more I zapped, the more Pac-Man appeared.
She told me to replace the Pac-Man with something positive I love, like flowers . But I’ve never been able to zap them all. So far, Pac-Man wins.
I was referred to an oncologist, who I call Dr. Sam. The unfortunate part was I could not get to see Dr. Sam until June 23rd. Most people will think that is fast, and looking back it probably was. It didn’t feel like it when every 24 hours felt like infinity. By then, I’d been bleeding and in a lot of stomach pain for over four weeks, never letting up. It already felt like it had been going on forever. My anxiety level kept climbing.
I was in pain, and there was the constant Chomp . chomp , chomp . Advice from family and friends started to pour in: “Get a second opinion,” “Go up to Moffit,” “Go to the Sylvester center in Miami.” “Don’t let them give you chemotherapy.” “Take the chemo if it will save your life.” “Try holistic measures instead.” I have no doubt that all these people meant well. They only wanted what was best for me. But it was overwhelming. I didn’t know what to do.
Still, Chomp, chomp, chomp.
In pain and at an anxiety level off the charts, I decided to go the ER at Sylvester Cancer in Miami. Tai put me in the car and we drove the 2 1/2 hours over there from here in Naples. Daughter Terri joined us there, but they would only let one person in with me. The ER did nothing except take my vitals and give me some fluids. After many hours, they told me I was being discharged because all my vitals were good. I lost it – literally. I refused to sign the discharge papers. Two supervisors became three. Arms crossed at the foot of my bed, they said if I did not leave willingly on my own they would have security physically remove me. What could I do? By then I was screaming: “Fix me. Do something.” There answer was, “That’s not the way it is done.” Of course, they may have been correct, but try explaining that to a hysterical, freaked-out woman with cancer.
All the while, Chomp, chomp, chomp.
Eventually we left, and after spending the night with Terri in Miami, we drove straight back to our ER in Naples. The pain was excruciating.
Yes, I have the “C” word. Coming to grips with it is challenging. When my sister-in-law suggested that I write a book about my experiences, I blew it off. Many books have been written about people’s journey’s through cancer. They surely didn’t need another one. So she suggested a journal. “Maybe it would help others,” she said. I believe she meant maybe it would help me. But she is also a cancer survivor. Perhaps she was asking me to be a voice she could not be. I am a writer. This is what I do. So why not a blog?
As I venture on this trip I don’t want to take, I will try to share with you what I am going through. It will be less about what is happening physically and more about what is happening emotionally. This is beyond hard. Harder than anything I ever remember going through before. And I have been through many rough times in my seventy-three years. If you choose to follow along, perhaps you are also facing the big “C,” or you have a friend or family member that is. Perhaps you will follow because it is something different from cancer. Maybe it is another physical ailment, or maybe a mental one. At any rate, if you find it helpful or relatable, I thank you for choosing to take this journey with me, walking with me, but even if you cannot walk it for me.
Before I get into the “C” chapter of my life, I must start with a big, heartfelt “A.” The A is for APOLOGY. Those of you who follow my blog will know that this blog is supposed to be about writing and promoting other authors. I have a long list of authors that I promised to post their interviews and the latest book they want to let the world know about. I have failed miserably with this ever since “C” has reared his ugly head. So I apologize to my author friends. You are not going to see your interview or your books promoted here for a long time. This is the only thing I can do right now. My mind is all consumed with “C.” Hopefully, at the end of this journey, I will be back to myself and be able to fulfill my promise to you and continue with the author interviews and book promotions. I sincerely wish you all the success in the world with your books. Author to author, I know that journey is another one altogether.
I will start my next post by catching you up on how I first found out about “C” and how I emotionally handled it. It will require a little medical information, but I hope not to bog it down with too much of that. Cancer is the antagonist in this story, and I don’t want to give him too much voice. This is my battle and I pray I come out the victor.