The Journey Continues...
A different route...
It came by to pay me a visit. It was not invited and surely not welcome. Yet there it was, sitting down quietly, saying nothing. I continued on with my day as much as usual that I could. For a moment I forgot it was there, it was so quiet, almost peaceful, but not peaceful at all, but seemingly peaceful. Suddenly, I felt a tap on my shoulder, I turn around, but it was still just sitting there in that same spot. But some how Its unwanted presence was filling the whole space. It felt heavy, like smoke you could not see, secretly filling your lungs with poison. Now, it had my attention, I move closer to face it. I asked, Why are you here? No answer. What do you want? No answer. It twitched somberly, it seemed sad that it had arrived, like it did not want to be here, but was beckoned. I thought, surely it must know that it is unwelcome & unwanted. Yet it sat there, in silence, lingering, crowding me out of my space.
Then, one day it faded. I’m not sure how it got here or from whence it came. But it seemed to slowly dissipate, to where I do not know. Dragging its tiny remnants behind. Until one day, its presence was gone and it no longer filled the room.
It’s been gone for a while now. Remission is what they call it. Not quite completely banished, but more like held in abeyance. I felt like I could have a few moments of peace & enjoyment. It was highly likely that it might return, but I purposed in the meantime that I would just try to focus on enjoying and busying myself with all sorts of busyness.
(Life going on.)
Today I am reticent in my spirit. It’s quiet, not a lot going on. I enjoy, for the most part, the quiet & solitude. But something in the air is different. I walk into another room, and there it sits. It has come back for another visit. I’m uneasy. Again, it is unwanted and not welcome. What are you doing here? Silence. What do you want? No answer. This time its presence isn’t as heavy, but it’s here, it is not welcome.
Into the thick of it...
You’re out of the dark
You’re out of the night
Step into the sun
Step into the light
On the face of the earth or the sky
Hold onto your breath
Hold onto your heart
Hold onto your hope
March up to the gate and bid it open…
(Wizard of Oz).
This is one of my favorite songs from the Wizard of Oz. As a child (and all the way into adulthood) you’re just singing along, like we do with every song, beginning with “Somewhere Over the Rainbow”. We just sing along, and then one day you’re like wait! There’s a real message here and this makes so much sense, not just for everyday life itself, but for my life, specifically right here and right now! “Hold on to your Hope, March up to the Gate and Bid it Open”! Such a profound and powerful phrase! I intend to … I am doing just that, marching up to the gates and bidding them to OPEN!
. . .
At the first light, turn left, your destination is on the right...
So, I began radiation the first week of April and will go through to the first week in May. At this point, I’m into my fourth week of radiation. Every day, 5 days a week, Monday through Friday! Few more days left! Dear Lord!
Can I just say, traveling in this direction has been quite/very interesting? Well, I say “interesting”, for lack of a better term. I feel like challenging is a better word.
When I began the second week, strange things started happening. Now, here’s the thing, I understand it’s different for everyone and different things affect different folk in different ways, and it depends on various different things. I get that. So, for me, personally, strange things began to happen. First, my skin slightly began itching & burning. Nothing too dramatic at first, just enough to wake me up out of my sleep. This mostly happens if the treatment area is delicate & sensitive. I would say my upper chest is very delicate & sensitive! Thankfully, the doctor, my now new radiology oncology doctor, anticipated this would happen so she gave me cream & gel to help soothe the area. Toward the end of the second week, upon the heels of the third week, I started experiencing some discomfort with swallowing. At first, it just felt like a hairball was stuck in the back of my throat and food was not going down as smoothly, so now begins the transition to softer foods. Now, the doctor did also say, that because of the area being treated I may at some point experience some trouble swallowing. Well, I was NOT prepared for what was to come.
One day I sat down to eat, I hadn’t really eaten all day because at this point it was just irritating discomfort. I took one bite, and ouch. That was strange. Another bite, and owe, that fricken hurt. By the third/fourth bite – OH MY LORD this pain erupts in my throat, down my (what I believe is my esophagus) like I never knew. Now again, The doctor, thank God, had pre-written a prescription to fill in case the “hairball” symptoms got worse before my next visit. But, as I said, there was no way on God’s green earth could I had prepared for what was worse. Which kept progressively getting worse, and I’m like how?!? Why?!?
Saturday night it erupts and the pharmacy is closed. I have the prescription, but then & there it was useless, just another piece of paper! But in the morning it would be worth more than gold!!! It’s too late for the pharmacy, too early for bed. But screw it, Tylenol & bed, because I can’t function anyway. My sister stops by my room to tell me something about something and I look up and say to her…. “This, this pain, this is worse than a sore throat, I don’t know what this is, it’s pain like I never knew… and then begins a River of tears. I tell her I’m not going back next week, I can’t do this. She is as comforting as she can be! Like seriously, what do you say to someone sobbing in pain, wishing you knew a magic trick or had a magic pill to give them, but all you have is a comforting embrace and prayers. Man, it felt about as helpless & hopeless as being in a storm in the middle of the ocean. I tossed and turned all night and at one point I sat up because it hurt to lie down. It literally hurt to move. It hurt to swallow at all. That’s something you cannot turn off. I said, “God, you know I don’t walk around feeling sorry for myself, but this is… I can’t do this. At that moment I felt Intensely the treatment was hurting worse than the disease. And as I lay there in this indescribable pain, I understood how so many people felt about yes, Cancer sucking; and too (just a tip of the iceberg) of why they pray for eternal rest. OMG! God Bless those that go through it and it’s a breeze, no pain! They really are truly blessed beyond words! They should know it! Needless to say, the Tylenol never kicked in. Of course. I sat there and I thought If I could just make it until the pharmacy opens (Easter Sunday Morning). I lay there and suddenly felt like I was resting my head on God’s shoulders, wrapped in the most loving embrace, and fell asleep for a couple of hours.
When I woke up it was daylight but, I said there was no need to even get out of bed or attempt to move until the pharmacy opened. I did make it to the pharmacy and immediately begin with this lidocaine cocktail – every 2 hours until I felt some relief and was half-human again.
We’d planned a fun day, I’d meal prepped on Friday, but I could not enjoy it. But we enjoyed each other and made the most of the day. Sometimes pain makes you sad and sometimes it makes you really mad. I was not myself for a minute (or two). And I just remember thinking wow, you just never know what someone is going through. We get up, get dressed, and show up, and you look at someone and you think they have it all together, and you just never know.
The next week begins, and I was so nervous. There were many reasons I was not ready for Monday and radiation trumped work! Imagine that! On doctors’ visit day, I explain to them about the pain and what was going on, and one of my doctors looks at me and says, “you still look really good”. I said Thank God for that!! Thank God I don’t look how I feel because I was taking a beating. But he was absolutely right, you could look at me (someone/anyone), talk to me, and just never know.
It’s amazing how far we can bend sometimes and not break. (Only God)! These are the things we don’t tell. We take our photographs and we pronounce blessings (we mean it), but you don’t really know what’s going on behind those pronounced blessings and why they mean more than just words. Folk asks us how we are, and we say we’re good – because that’s what folk want to hear (not in a bad way); they really do want you to be okay. But they have no idea what’s behind “I’m good” and what it took for you to get there at that moment. We don’t talk about the physical pain (internal & external) or the sleepless nights or nausea. And when folks are doing their best to be encouraging by saying “you got this”… We don’t say, “no, nope, I don’t got this”! because some days you’re like what the hell is this anyway, I don’t even want this! Nope, I don’t got this!?! But okay. We don’t talk about the mental & emotional tolls or anguish. Or Just really what it took to get from point A to point B, C, or D. And that’s okay. It’s okay to feel like not only do I “don’t got this, I don’t want to.” But in my more clear & sober moments, it is my most sincere wish that no one ever feels or is alone when they need a minute or two of the company or just to be embraced! Not just if they are experiencing rough patches (but mostly), but just in general, anytime! Ever!
I wish that there was someone to hug everyone. When I started out to do the baskets it was because I myself was once in the hospital and just wish I had a piece of hard candy, some hand cream, or a puzzle book! And an amazing kind soul stopped by and brought me hard candy & a puzzle book. So I wanted everyone to have a hard piece of candy, fuzzy socks, hand cream & puzzle books! Now, I want everyone to still have All of that, but add lots of hugs and love to those things, never-ending hugs/sincere embraces. And I hope that everyone appreciates who they have! On the first day on my way to radiation, I said out loud, I wonder what my parents would think to see me going through this. But it was like I was having back-to-back dreams about them, and it didn’t fully (completely) register. I said, I know I’m not alone even when I’m by myself, but sometimes it sure feels like it.
So, I’ve arrived! I get dressed and ready to get into my personally made mold and the tech says, what do you want to hear, I said, just throw on some jazz… and the very first song that comes on is In A Sentimental Mood! All I could do was smile and say, wow God, look at you! And I believe just to confirm what was confirming my understanding, it came on again the next day!!! Today, into week 4, I felt mentally & emotionally checked out and had a total meltdown at work! It was inevitable that it would come. I’d been holding it in for a bit, I should have anticipated it would bum-rush me! Just a combination of the fatigue & pain and well… just everything! From clinic to work, normal to abnormal. Abnormal to trying to be normal: and OMG the fluffy brain! It was inevitable. Nevertheless, I powered through it and made it through the day.
Tonight, I was awakened by the itching & burning sensation, and an intense sore throat! And I KNOW that I’m so incredibly & immensely blessed! I know that way down deep where it matters in the embers of my soul, the core of my being! I’ve come to realize that when God makes His presence known-known, like really, truly, above my ordinary “knowing” … Hold on girlfriend, the ride is a bit bumpy already… keep holding on, you’re going to hit a few deep potholes, but I’ve got you! And when you think or feel like your wheels are coming off, have come off… it’s okay. Grab a hold, I’ve got you! I’m not (never) going to let you go! Can I just tell y’all that there is soooooo much comfort in knowing with every cell in my body & every fiber of my being, “it’s okay if I feel like, no, I don’t got this” God always Has Me! So much comfort! And soon I will be on the other side of it!
Coming Out on The Other Side... (Again)...
but mentally though...
Recovering mentally as well as physically is an ongoing, well, let me just say something that you realize you do everyday, inside and outside of treatment. The thing for me, as far as actually going through treatment is the “why” behind it. That has always been the thing for me. It’s okay, I have to take these pills four at a time twice a day, but it’s the why behind it, because they are not vitamins! So going through radiation, although you talk yourself into getting used to this routine for more than a few days, it’s the why behind it, because for every day five days a week for a few weeks, is not about going to physical or occupational therapy. It’s like you’re doing this because, if you do not do this… Well… That’s as far as I’m willing to take that thought.
What day is it...?
So, here we are! One week after it’s all complete! I feel like a piece of me has my life back. This morning I got up and didn’t have to sit down to work before dawn to make up time for my mid-day appointment. I got up, got dressed, and went outside for a walk! It felt like happiness! Bliss!
I feel like my body is slowly recovering and coming back to itself. I may even have my voice back. (Which has been missing for over a week now). During the last full week of radiation, the sore throat shifted into a different kind of sore throat and invited some congestion and a few other things along with it. The last couple of days, I practically crawled to my appointments. I felt like, well not that great, but I thought, no way am I missing these last two days to drag this out, so I went and got it done. I was quite proud of myself, that I made it there and back all on my own. When I got home Tuesday from my appointment, I practically collapsed on the couch.
Reaching back – saying Thank you! Although radiation was hard! Like I said, one of the hardest things I’ve had to do besides giving birth – I had a AMAZING radiology team! Even the receptionist was a Lovely Delightful Burst of Sunshine every morning! Some days/most days, it is difficult enough to wrap your mind around that this is actually something you need to do – so to have an AMAZING stream of support is, well, it’s AMAZING!
I'm going to make everything around me beautiful. That will be my life.
(Elsie de Wolfe)
After the scan...
I completed radiation therapy May 3, 2022. June 10, 2022 was my first CT after radiation therapy! This would be the tell-tell of what actually happened with the radiation therapy! If the targeted areas had, in fact, been treated, and all was clear. The blood draws and the scans were the easy parts though, right?!? Well, normally it is, but not today. Today was especially hard. The phlebotomist, who is sort of usually more gentle, must have hit a special nerve today, because it hurt like at “B”!!! I thought for sure there would be a bruise later. Now off to the CT lab, with contrast, no less. So that meant, another needle, but this time IV. UGH! I’ve come this far in my life (with this treatment), and I’m no wimp when it comes to needles. Do I like needles, No! I most definitely do not! But the absolute worst for me is getting an IV. UGH! Of course, I get somewhat of a newbie, who can’t readily find a vein. So in comes someone with more experience, right?!? No, not really! She can’t readily find a vein either, so now she is searching for one in my hand. Now, I know from past experience NOT to get an IV in my hand, that is the WORST, most painful spot for me. But this time, I’m just like Dear God! Let’s just be done here and get this over with. I’ve been poked and prodded so much on just this one visit that tears are just dropping out of my eyes. Not streaming down my face, dropping like tiny raindrops. I’ve been waiting longer than usual, they only have one machine that is working, and I am mentally whooped! When the tech walked away, I whispered to God, and I said, “Lord, I don’t know what needs to happen here, but I need you to intervene, and let this be the last poke and let’s just get this done, because I can’t take too much more of this.” I know that some folk probably think, “well, what’t the big deal, you’ve done this before, time and time again, what is the big deal?” Well, anyone who is walking on any kind of similar road knows, it’s not just about the needles. It’s what’s happening in its entirety. All of those emotions just come flooding back in! It’s physical and it’s mental and it’s emotional and it’s psychological, it’s a plethora of emotions, all trying to take their place in your mind to be identified, acknowledged, accepted and then put at ease. It is much.
I finally get through the blood-draws & scans. Monday is the appointment! The follow-up appointment with oncology, to find out, “success or not success” of radiation – that was the question! I’m not worried that it was not a success. As a matter of fact, Friday’s appointment was a clear indication that on Monday, all would be well. But, if I told you that there was never any anxiety with these follow-up appointments, I would not be telling you the truth. There indeed is anxiety! I have the BEST team, and that really, totally, and completely helps! The doctor comes in, whom I absolutely love and adore. Like, honestly, if I didn’t know any better I’d think I had some sort of erotic transference condition! BUT, I do Know Better, and it’s NOTHING like that! (Insert Smile). Anyway, he comes in and asks how was radiation! I immediately tell him how horrible it was, and how I almost gave up. He’s nodding, taking his notes, reviewing notes (I’m guessing from the scans). He turns to me and slightly smiles, not really all that concerned with my past experiences with radiation therapy and so very matter-of-factly states, “well it worked”. “Scans are all clear”. I’m excited, sure I am. I’m happy, yes indeed I am. But I’m settled within myself and I’m thankful, grateful and I’m proud of myself for making it through it. I finish up my exam. Oncologist says, “okay so now we’re back to every 3 months, right back on track.” Meaning Each scan set CT/MRI are 6 months apart, bloodwork, scans, follow-up! I’m good! But it’s not really over! Where is that Fat Lady when you need her to show up and sing!