The beginning of my low point
May 2 –
Training class – Woke up feeling so fatigued and without energy. Heavy breathing during these times has become a new normal. Having to sit down, take a break and rest while getting ready seems unheard of but I still went to work. I was sooo tired that I didn’t feel like being the instructor today. It wasn’t even 10:30 and I wanted to put my head down and fall asleep. I got so fatigued and my eyes super heavy that I swear I lost consciousness for a moment. I was talking about rewards cards and the policies that go along with it and suddenly I was talking about something else not even related to training. In between that, is where I lost myself for a moment. It scared the hell out of me. What if that happens when I’m driving? I could cause an accident. It jolted me out of my fatigue for a while but it only got worse as the day went on. When I left I was totally drained.
My nephew came over later that evening and wanted to have a movie night. I was so tired but I figured, all you do is sit or lie down, so why not. Turns out I was too drained and wasted to even watch a movie. Have you ever heard of that? I finally had to just go to my room, but my body felt like it weighed 500 lbs and moving from the living room to my room took it straight out of me. Walking there left me breathless and with a racy heart.
I didn’t work the rest of the week. I planned for a hard low point. Its such a good thing I did it that way. This last heavy round had me lethargic and miserable as hell. All I did was lie in bed. That’s all I was able to do and it left my body in pain. From sun up to sun down, I laid in bed, getting up here and there. Its horrible when you don’t even have the energy to eat and you’re soooo tired you can’t sleep. The steroids that they give me keep me wide awake and make it impossible to sleep. So, being fatigued and not sleeping is a HORRIBLE combination. A couple of times, Dominic needed to go to a friends house to work on a school project, driving him there during my low point took ALL THE EFFORT IN THE WORLD!!! And practically left me gasping for air and a need to pass out. Crawling in bed became a normal routine. I was running on pure fumes.
Like before, sores have invaded my mouth and these were the worst they have been!!! I have them on my gums, my inner cheeks and the roof of my mouth. Just having something to drink is painful and trying to swallow is the worst. They prescribed me a ‘magic mouthwash’ serum of lidocaine. That gave me relief enough to try and eat. Everyday I lost a little more weight from not being able to eat.
Friday – this is when I usually start to feel better and thinking that I was feeling better, I took a shower. Holy cow I thought I was gonna pass out from a lack of energy and had to get out. I barely had enough energy to get a towel, get out and take maybe 6 steps to my bed. I didn’t think I was gonna make it. I fell on my bed with such a heaviness. My heart was pounding heavily from the exertion it took just to get there and my breathing was uncontrollable. I couldn’t move from my bed. I didn’t think my heart was ever gonna slow down. I stayed there the rest of the day. Oh what misery!!! I was TKO’d from this last heavy round. I started to feel depressed, I even started missing my hair. Something I hadn’t done. I cried, I was so miserable and there wasn’t a single thing I could do about it. That’s how it was gonna be. Saturday came along and I still didn’t feel any better and nope, I didn’t get any sleep. This had me worried cuz i needed to go back to work tomorrow and I still felt like hell.
Sunday, May 7th – I just didn’t have the energy but I still showed up to work. I’ve been having a hard time clocking in/out ( we use our fingerprint ) my hands have gotten like sandpaper and they are extremely dry. They’ve been peeling nonstop as if I’m shedding skin like a snake. They hurt really bad, not even lotion helps them.
I was feeling so worn out that I needed to lean on my check stand just to help me stand up. My breathing was heavy and as the day went on, it just got worse. I can’t believe I’m not better by now. This is going on almost a week of feeling like shit. I went on break and went to Penny’s office, she and Clara Sue were in there and I just broke down and cried from exhaustion. I couldn’t believe how awful I felt. I had a meltdown. Clara Sue sent me home and I left. I got home and lied to my son. He’s been super worried about me. He was worried I was home early cuz I wasn’t feeling well. That was the truth, yes, but to keep him from worrying more, I told him that the power had gone out at the store and that all we were doing was standing around, so I came home. The story about the power going out was true, that did happen earlier at the store. But I didn’t want him to know I was feeling like shit. I went to my room to rest. I was completely and totally zapped out. My low point had me at my lowest and I didn’t think I was gonna make it. If this is what hell is like than I’ve been there all week. Misery and feeling lethargic aren’t even the words to describe how chemo makes you feel. I don’t know if there are ANY words to describe it. THIS week was the ABSOLUTE worst I had EVER felt in my life!!!!!! 😭
I just want my energy back. I just wanna be me again. Is that really too much to ask for??
My babies: Reggie & Riley – Watching over me
As shitty as it has been, slowly my low point disappeared and I was back to work on Monday.
Thursday, May 11th – Switching over to Taxol
Today I begin the other chemo, Paclitaxel (taxol) 131.2 mg. This isn’t as intense as the other and it’s just 1 chemo, not a double dose. I’ll do this one every week for the next 12 weeks. July 27th is my goal. It’s still gonna be on Thursdays so that I have the rest of the week to recover. Since this is a weekly one, I hope it doesn’t knock me on my ass like the A/C did. I don’t have that week in between to feel better. I’m gonna get hit with this one weekly. Like the others, this one came out in that same horrific packaging 😟 We start with premeds. They’ve changed as well. They’ll be different since this is a different chemo. So we start with – benadryl, pepcid and that awful steroid, dexamethazone. People get horrible allergic reactions to this chemo and they need to keep a close eye on me. Just in case, I’m given a call button. Premeds are given, that took maybe 30 minutes. Now time to switch. Taxol is hooked up and that will take an hour. Good Lord the benadryl made me very tired, I’m so sleepy 😴 Wonder why benadryl doesn’t work like that for me at home when I’m trying to get some sleep? hmmmm. . . When I take benadryl to try and sleep, I don’t just count sheep, I count all of Noah’s Ark. Funny how that is!! The nurses explained to me that I need to be careful with Neuropathy. It is a common side effect with Taxol. It can cause irreversible nerve damage. Symptoms include – pain, a pins n needles sensation, numbness and weakness. Can be burning and tingling or sharp in the hands and feet. It can cause over sensitivity, reduced sensation of touch, or sensitivity to pain. YIKES!!!! 😲 I hope I don’t get that 😧
I no longer have to take those ‘at home’ medications nor do I have to come back the day after to get that booster *neulasta* shot. I’m so happy because of this. One of the medications was a steroid and would keep me wide awake. Soooo, no more of those – YAY!!!! Maybe I can sleep now.
Round 1 of taxol – complete!! (so far, that is 5 rounds altogether)
Friday – Wow, my hands really hurt. They’re suffering a bunch. They burn. They look awful and even look discolored and they are peeling horribly. My eyes are blurry but not as bad. My mouth sores from my last A/C treatment are almost gone and I haven’t gotten dry mouth yet. So, I really hope it’s true what they told me about the side effects not being so bad. But, it’s only 1 day post Taxol, so we’ll see. Last night I had so much energy I was wide awake with that damn steroid they give me as a premed, I was up til 1:30. Lying in my bed staring into the dark. I really need sleep.
Saturday – Man alive!!!! My hands hurt soooooo BAD!!! They burn like hell. I can’t tell if the water is too hot when I wash my hands and it hurts to even do that. It feels like I dipped my hands in acid. I’ve never had pain like this before, ever, especially in my hands. I can’t turn the door knobs, button my shorts or grab anything!! 😱 THEY.HURT.SO.BAD!!!!!!! It has to be a chemical reaction to the new chemo. I’ve lathered them with lotion and vaseline, doesn’t help. Just vaseline with gloves on to seal in moisture, doesn’t help. I put a healing ointment on them with the gloves, nothing. I got so desperate for relief, I dug out my Dads’ burn cream and lathered my hands in that, Nada!! NOTHING HELPED! They hurt and burn terribly. I can’t live with this kind of pain, it’s unreal. I’ve never even heard of this kind of pain. I can’t do this weekly, my hands hurting like this. OWWWWWWWW 😭
The next day at work I had the hardest time grabbing items to scan or typing codes on the keyboard. The pain in my hands was still there and had only subsided a bit. I feel worn out and tired today for the fact that I’m not sleeping and the pain kept me awake. Since I had such a bad Sunday last week I had my lead supervisor only schedule me a 5 hour shift. Thank God, by the time I left, I felt wiped out. Also I had back pain isolated to one area. I feel like I’m falling apart. It seems to always be something. I walked out with Penny and all I did was complain about how I felt, I felt so tired. I told her about my back pain and she said to go home and just rest. I think Sunday is my new low day. I left, got home and stayed in bed the rest of the day. Penny sent me this to lift my spirits.
Monday – 5/16 – I didn’t have anyone in class so I went to my store and worked a few hours. Learned the new system at self check out. My hands feel so much better and so do I. Just a bit tired. But my back hurts on one side, in one spot, I feel like a small bump. When I got home I checked it out. I could see what looked to be like a small rash, like a bug bite. I went to the other room and asked Dominic what it looked like. He said, “yeah Mom, it’s a bug bite”. Damn bug, it hurts. Okay, I didn’t worry too much about it.
Wonder what bit me? It’s painful when I touch it and it’s making my back hurt in just that area.
The next day – ouchie, the rash from my bug bite spread. And it hurts, it’s giving me more pain. I was explaining what it looked like to one of my Aunties and she thinks its shingles. Nah, it looks like a bug bite. But I wonder??
Wednesday – Okay something is not right. This rash really hurts!! And it looks horrible! I’m having a really hard time with this pain and I’m at work. I’m starting to wonder if my Auntie isn’t right. MaryBeth says it’s shingles and so does one of my other managers. I need to call the cancer center and find out.
I call and explain that I’m in horrible pain. The nurse and I go back n fourth with phone calls to figure out whats wrong with me. I’m urged to go to urgent care to rule out shingles. If they are shingles I won’t be allowed to come in for treatment tomorrow cuz I am extremely contagious and everyone at cancer center is at such a high risk for infection 😢
At urgent care ( in an extreme amount of pain ) – Yes, you have shingles! 😩 The doctor who saw me was an asshole and wasted my time. Instead of being a professional doctor and prescribe me something, he offered me 3 different kinds of pain killers and asked which ones I would like? What doctor does that? If I was a druggie, this would have put me on cloud 9. He actually wanted me to choose between the 3!!! 2 of them I had never heard of, I was in so much pain I settled for the Tylenol w/codeine. He gave me the scrip and I left, It was almost 9 and the pharmacy closes at the time. I was still in disbelief, going to the pharmacy, that he had me choose a medication. Stupid fool!! 😡 Very unprofessional!!!! I should have reported him, but I didn’t. I went on with my misery. Got my medication, went home and slammed a pill. I needed relief so bad. Did it work? Nope. . . the pain kept me up ALL.NIGHT.LONG. Even with taking it every so often, I felt no relief. The pain was off the richter scale!! Either the meds aren’t working or the pain is just THAT bad.
Thursday morning – 5/18 – OMGoodness!! I can’t take this anymore. I call cancer center and tell the nurse that the pain is just too much. It’s the worst pain I’ve ever felt. She lets my oncologist know and he calls me back. We talk about my shingles and the pain and he tells me it can get really bad. It’s nerve pain. He prescribes me gabapentin, morphin and an anti-viral, Valacyclovir (Valtrex) 💊💊💊 I was shocked at the morphin. Holy cow!! I must be in pain. Yes! I was! Plus, I’m EXTREMELY contagious right now!! I asked my younger brother Ray to take me to get prescriptions cuz I was in too much pain to drive and since morphin is a controlled substance they weren’t able to fax it in, I had to go pick it up. I cried in the car to the hospital and to the pharmacy I was in so much pain. I think my brother freaked out. Got to the pharmacy and couldn’t wait for them to fill it. The pharmacist couldn’t believe I was there again for more medications. I asked her if she could just give me an epidural. At least that one would give me instant relief. WE get my meds and he takes me back home. I can barely even walk with this pain. Get home and slam all 3 pills, crawl in bed and wait for relief. Morphin I need to take every 4 hours, gabapentin 3 times a day and Valtrex once a day. Oh how I need relief! This misery just goes on and on and on. If its not weakness, fatigue, mouth sores or painful hands, it’s shingles. And with every one, the pain gets more and more intense.
Reggie can sense I’m not doing well. He is always near by to keep an eye on me. He lays with me. That’s his spot, near my face. We rest together and he even kisses my face. He’s been by my side ALL day! When he meows, it’s like he’s asking me, “do you feel okay?” I just love him. Hopefully this horrible pain will go away, I hope these meds do their job.
Reggie – Isn’t my baby just gorgeous?!
Shingles are gross. Open blisters on your skin with nerve pain from hell. It’s hard to sit back on a chair without them hurting or lying on your back. I wasn’t allowed to do my treatment today because of them. So my date that I already had marked on my calendar (July 27th) is no more. It got pushed back to Aug 3. I can’t get treatment til they pop and scab over. When that happens then I can continue. Damn you shingles!!! I don’t wanna prolong this journey. I don’t wanna be in pain and misery anymore!! I just wanna be done! 😭
Finally relief!!! The next day I woke up to some relief. Pain meds worked like a champ! I had a hell of time trying to get some sleep but at least I was able to keep my meds on schedule. That morphin was the bomb and did what it was supposed to. I’m tired as hell and worn out from all the pain I had yesterday but at least it’s gone. Slowly they are trying to scab over and boy do they look nasty!! I can’t do anything to speed up the process. They have to run their course til it’s out of my system. It can take up to 3 weeks. In the meantime, I have all the nerve pain to deal with. Thank God they gave me painkillers. 3 weeks is a long time to be in pain. I say this all the time, “I can’t wait til it’s over! Man, I can’t wait!”
A couple of days later. Yuck!! Nasty!! It looks like I have a disease. I wouldn’t wanna be around me. Gross!!! *gag* These little assholes are painful f**kers! I hope you never have to experience them.
May 24 – Treatment continues and I have to see the doctor. He’s going to examine me, see how I’m responding to chemo and check my shingles. I hate the fact that I had to skip a week. This should be my 3rd round of Taxol, instead, it’s my 2nd. During the time of my shingle episode, my mouth sores went away. Yay!! I’m so happy for this! It’s so hard to eat when you have horrible sores in your mouth. My eyes haven’t been so bad but the dry mouth is still there. He does his examination. It doesn’t hurt at all like before, all the pain is gone. He mentioned that it (lump) was harder to find and it felt like it was almost gone!!!! *GULP* almost gone????? Did I hear him right??? Deep breath Sue, deep breath. OMG This is GREAT news!!!! He said I was responding very well and the chemo was doing its job. That’s just after 5 rounds! I am a happy girl 😄 I needed this news. I have been having some really hard days. It brings you down to the point you feel depressed. Today was a good day. I will still need surgery. Just as long as it continues to zap it out, I will fight to get to the end. I’m off to do my treatment with my big girl panties on and my boxing gloves. Eff you cancer. I’m gonna beat your ass!!!!
The doctor asked if I was still working and I told him ‘yes’. He said I was a very strong woman.
Oh the fatigue is back! And it feels like its getting worse. There are just some days where it feels like I’m at the bottom of a big black hole with no way to get out. All I do is rest, even though I need it. I can’t sleep at night at all and it’s wearing me down. The doctor said it was gonna get harder and harder for me to work. And trying to decide WHAT to do about work is weighing on me heavily. Financially, I need to work. Physically, I need to be out, like now. My Aunt wants me to go out on disability through social security but I don’t qualify. I tried applying for food assistance, twice, but they denied me. Even with the doctor bills starting to flood in. I’m soooo stressed out. And always so tired. I can’t go out on FMLA cuz so much time needs to pass from the last time a person was on FMLA. I was on it when I was out with my ankle and that’s only been a few months. So, I have to wait til July so it can reset. I just want all of this to pass. I just wanna be me again. I wanna feel good and not so tired all the time. My son is now out of school and I can’t plan anything because of treatment and even if I did, I would probably be too tired. All of this, EVERYTHING, suck ass. The side effects, the fatigue, the pain. JUST.SUCK.ASS. I know I’ll get through it and it’ll pass. But right now things are so dark and stormy, I can’t wait for a sunny day.
June – The shingles are slowly healing. They have scabbed over. I still have nerve pain and I could have that for a while. 6/2 another round out of the way.
We’re having a work BBQ and Sarah, my oncology nurse is gonna be my date. I just love her!!! She takes the best care of me during treatment. but she likes to pump my veins with toxins 😜 She does have heart of gold.
Every now and then, there are some good days. When those days come, you have to grab them and run with them. They are few and far between, at least with me they are. When the sun is shining and the birds are singing, you know you’re having a good day. There isn’t always pain, but the tiredness is always there. My eyes have been opened wide. To how fragile life can be. Every day that goes by I have a greater appreciation for life than I did before. My life right now sucks balls, but guess what, I still love my life. I thank God for my life everyday. Aug 3 is 2 months away and I know I can get there. Feb 13th is getting farther and farther away from me. That was 4 months ago I got my bad news. Did I think I would get to this day 4 months later. . . nope. I remember when I couldn’t think of anything else but breast cancer. It was on my mind 24/7. The fear, the obsession for information. Now I don’t think about it so much, it’s not on my mind like before. Now, I think about chemo, the side effects and not being able to sleep. I think about how I’m gonna feel everyday that I wake up. I guess thats mental progress. My body is slowly getting used to this new treatment. Now if the shingles can just go ALL the way away, I would be a happier woman. I still get pain in my back, the nerve pain. The scabs are taking forever to fall off and its still painful to the touch. Oh and I need sleep, lots and lots of sleep. I would feel so much better if I was able to get sleep so my body can rest up. It’s so worn down but I refuse to give up. Gonna take it to the end. I CAN DO THIS!!!! 🙏 💪 👊
I’m having the worst pain flare up of my life. . . . . . . . 😭😭😭