THERE IS ALWAYS HOPE! ! !
NEVER GIVE UP! EVER
FIGHT LIKE A GIRL 💞
June 6 –
Woke up in a great mood today and feeling pretty good. My energy doesn’t get too low like before so I think those crazy worn out days are behind me. I hope so anyway.
Whenever I have a good day, I need to take it and run with it. I don’t feel as fatigued anymore but sometimes it takes me by surprise and leaves me in bed all day. Since today feels like a ‘normal me’ day, I wanna take my son out on a lunch date. He’s been out of school for a couple of weeks now and I haven’t really done anything with him. I’m always so tired. I’m upset cuz our summer will be tied down to weekly treatments. There goes all our camping we like to do. And a trip somewhere will be out of the question. I’ll need to squeeze in some quality time whenever I can (feel good). So a date it is.
We decided on Sadies. Mmmm we love it there! 😋 Their chili con queso is to die for. We could eat that like daily haha. So yes, we feasted on that, took our time, talked and enjoyed our lunch date. He’s the best date ever!! ❤💞 I’m stuffed!! He’s ready to relax.
Later in the early evening I was taking care of a few things around the house while my son played a video game. UH OH. . . All of a sudden I’m getting back pain on one side. What the heck?! Maybe I twisted a wrong way. . Okay this pain is quickly getting worse. It’s in the same area as my shingles. Oh no, I hope I’m not having a recurrence of those. That was awful. I take a gabapentin 💊 Those are for nerve pain, just in case it’s the shingles again. No relief and it’s getting worse. I take a morphin 💊 Another one that they gave me for shingle pain relief. That helped me before, so I hope it does this time. Nope, it didn’t. How can those two not give me relief? Ouchie, this is getting really bad 😩 and the pain is coming around to the front. Am I having appendicitis? The front pain is right where my appendix is and the back pain is in my kidney region. Do I have a kidney stone, is it my appendix, do I have shingles again? What is it???? Oh the pain is out of control and the medication IS NOT working!!! The pain went from 0 to 10 in a matter of a 1/2 hour. Something is way wrong! I send a message to my oncology nurse, Sarah. Unfortunately, she is not working and can’t ask the doctor. She has no idea what it could be, it could be any number of things. She advises me to call the after hours cancer care if the pain doesn’t get better. By this time I am crying, the pain is so intense. Dominic walked into the room and immediately freaked out. He asked, “What’s wrong, you were fine earlier?” And I was, I don’t know what happened. “The pain is horrible!!” I hate crying in front of my son. I don’t want to worry him. I waited a while longer to see if the pain would ease up but it only got worse. My mind couldn’t stop thinking that it was my appendix. What if it burst? I would really be in trouble. I should go to the ER right now. But I’m a stubborn ass and I waited. I did call the after hours and explained all of my symptoms. They were gonna relay the message to the doctor on call, he would call me back. In the meantime, I asked a friend, Christine, if she would take me to the ER if I was told to go. There is no way I’ll be able to drive myself.
Christine is a very very good friend. I have known her for several years now. I met her when my son was in elementary school. She works there. Her grandson, Matthew and my son have been best friends since kindergarten. Through them, she and I ended up becoming good friends. She has a good heart and shes very caring. Thank God she was available to take me AND she even lives close by. The doc returned my call and told me I had to go the ER right away, I could have an infection. Oh gosh. . not something new. She picked us up, we dropped off Dominic at her house to stay with Matthew and we headed off to the ER. The pain had gotten so bad that the bumps on the road hurt me. I started to shake. I let Ray know what was happening and he said he would be there as soon as he could. We got to the ER and it was full of people. Just my luck. I hope I don’t have to wait long. I hate going to the ER. You wait forever before they even see you. *sigh* This has to be the worse pain flare up I have EVER had. The medication that I took earlier hadn’t helped at all and I can barely walk up to the counter or even talk. I give them my info and symptoms and get checked in. I tell them I’m a cancer patient, all the symptoms I was feeling and that the on call doctor advised me to come in. That didn’t seem to matter one bit. They looked it up on their computer, tagged me and sent me to sit with everyone else. It was after 7. I sat with Christine in the waiting room in excruciating pain that wasn’t getting better. I kept thinking, if this is my appendix and it burst, I’m gonna be dead soon. My mind puts me through hell. Finally they call my name. I thought I was gonna be taken to the back. . .nope. . . it was only to hook me up to an IV and ask me an onslaught of questions. I was shaking so bad because of the pain that I couldn’t sit still long enough for the machine to get my proper vitals. Again they asked what my symptoms were and how bad the pain was. Geez, how many times do we need to go over this?? Well damn, by now the pain is way beyond a 10!!! I started throwing up. My tummy got so nauseous from the pain. I told them that I had already taken a gabapentin and some morphin and it didn’t help. They gave me an injection of dilaudid 0.5 mg in the IV they had just put in, said it was fast acting, an opioid and some Zofran 4 mg/2 mL injection 8 mg for my nausea. After that, they sent me back out to the waiting room. I waited and waited and waited and waited. That narcotic they gave me barely even touched the pain and only for a moment. I was back to excruciating pain 😭. 8 o’clock passed then 9, finally at 10 I was called and taken to a room only to sit there for another 2 hours. Again I was asked another set of the same questions. What the hell?? And again I couldn’t sit still long enough for the machine to get my vitals. The pain is horrible!!!! This is definitely worse than the shingle pain and I thought that had been the worst. Either my pain tolerance has really been affected by the chemo or this pain is just that intense. I’m no sissy when it comes to this, so I have no idea what is going on. It is unbearable and they can’t understand how the dilaudid didn’t work. At 11:30 the doctor and a nurse came in with 2 more drugs for the pain. I was grinding my teeth and in tears. My brother and Christine sat there helpless as they watched me in agony. This time it was another dose of dilaudid, 0.5 mg AND toradol, 30 mg/mL. She said that those together should give me instant relief. I turned down the toradol because it contained ingredients I couldn’t have during chemo. They said the dilaudid would work just as well alone and I should feel it immediately. I didn’t before but this time I felt it run through my veins. It was a warmth that ran through my arms that gave me an awful hot flash that seemed to last forever. It gave me very little relief and only for a short while. It didn’t act as fast as they said it would. During this time I was given a liquid to drink for when they take an ex-ray. It was horrid, awful and a funky color. It made me gag every time I took a drink. 🤢 I needed to drink at least half of it. It was 24 oz. I can’t even swallow this garbage without wanting to throw up, let alone drink half of it. I did my best. They left the room and once again I waited and waited and waited. Here comes the pain again. 😣 Well that drug didn’t last long at all. Again I can’t sit still. The pain has me writhing in the bed like a snake. What the heck is wrong with me? And how come none of the pain meds are working? Where is all this pain coming from? I wanted someone to take me out of my misery. The night drug on like a car trying to move with its emergency brake on. I just couldn’t believe the agony that I was in.
At 12:20 a nurse came to get me to take me for my ex-ray. Finally, sheesh. I didn’t think that was ever going to happen. I thought they had forgotten about me. I was only able to drink maybe a 1/4 of that liquid. Hey, I did my best considering how horrid it tasted. Oh My Goodness!! Trying to move from the bed to the wheelchair gave me unimaginable pain and the same from the chair to the ex-ray table. When is this gonna end? I had my brother call one of my bosses to tell him I would not be going into work tomorrow. This is the first time that I’ve called in since I started my treatment and my first call in this year. I don’t ever call in, EVER! I hated the idea I wasn’t gonna be able to make it to work. But there is no way I can work in this kind of pain. The ex-ray is over, Thank the Lord!! That was awful! Okay now to get back in the chair. I hurt sooooo bad. I was back to the excruciating pain that I had been in for most of the night and started throwing up again. Finally at 1 am, I couldn’t take it any longer. The pain has just intensified as the night went on and nothing had been working. I told my brother, “screw it, go get the nurse and tell her I’ll take that other drug that I turned down, I can’t take the pain anymore!” About a half an hour later she and the doctor came in with it (toradol) and some fentanyl, 50 mcg/mL. They asked me if I was okay to take it and I said, “yes, I can’t do this anymore!” So the nurse administered both of them through my IV. WOW!! Within minutes I had complete relief. Finally after hours of intense, agonizing pain, I had relief. I was able to finally lie in bed and relax. I stopped shaking and grinding my teeth and my breathing went back to normal. My heart rate came back down and the machine was able to get my vitals with no problems. I let out a huge sigh of relief. A few moments later the doctor came in to tell me I had a kidney stone along with my hiatal hernia. What?!?! All of that pain was from a kidney stone? That didn’t seem right. I’ve had those in the past, yes they are painful mother effers but they have NEVER put me through this much pain. I can actually deal with a stone with no problems as long as I have a pain killer and most of the time, I only need 1 pain killer. This took 6 pain killers before I felt relief, 6!! I thought that whatever I had was gonna kill me. It took a gabapentin 💊 a morphin 💊 fentanyl 💉 toradol 💉and 2 doses of dilaudid 💉💉😩 Good Lord!!! How in the world did I not die of an overdose? How is it that I walked out of there on my own 2 feet and not half dead on a gurney with babas (spit) 🤤 dripping out of my mouth? The nurse and doctor left me to rest after the pain killers were given to me. I told my brother to go ahead and leave, the pain was gone. It was 1:30 and he needed to be at work at 4. I felt so bad for him, he didn’t get any sleep. Christine was still there with me. She stayed the whole time and not once did she complain. Even though I told her earlier to just leave me there, she didn’t need to stay, but she did. I apologized over and over for this taking as long as it had. She didn’t care. That’s what real, good friends are. They stay with you no matter how bad or painful it is or how long it takes. Or how much you complain about it. The whole night she stayed right there with me 💖
The doctor came back in about 2 am. She said I looked so much better. The color had come back to my face and I looked relaxed. I did feel like a whole different person from just a few hours ago. I was talking and joking and being my sarcastic self. She said we had to wait til all my vitals came back to normal and to rest for a bit then I could leave. At 3:30 am I was finally released. Phew. . . what an ordeal. 8 hours here at the ER. My most PAINFUL experience, by far! I walked out of there with Christine talking and laughing like nothing ever happened. I felt like normal me. I still can’t believe I needed 6 pain killers (big ones) and here I am walking out the door as if I was only given tylenol. It took all of my pain away but it didn’t affect my abilities one bit. It didn’t make me stupid or high. We left, went back to her place to get my son and I drove us home. I had no problems at all. Amazing!!
I laid in bed ever so grateful for what amazing friends I have!! They are the best. I was physically and mentally exhausted but I couldn’t sleep with all the meds I had taken. They had me wide awake. I have a kidney stone. I thought that bastard was gonna kill me. How on earth did it cause me so much pain? That has never happened before. I have never needed so much medication for those. Damn you cancer and chemo for putting me through all of this 😠 What are you gonna throw at me next? Cancer, losing my hair, mouth sores, no energy, shingles, kidney stones aren’t enough? Stop doing this to me!! Stop making it so rough.
I got very little sleep. When I finally dragged myself out of bed I felt like I got hit by a freight train 😫 but the good news is, I felt so much better from all the pain. I had minimal pain. But to stay ahead of it I took 1 pain killer to be safe. They gave me oxycodone to take at home. I tried to rest as much as I could and later that afternoon I felt that little asshole make its way to my bladder. It’s like birthing a baby. Here comes some pain again and burning. I’m gonna push you out, you asshole. The baby (kidney stone) arrived at 6:28 pm, 3 mm long lol. Ouchie. I named him Satan for all the pain it had me in through the night/morning. Once it was out, the pain was instantly gone. Just like that, pain goes away. All is good now. Look at that sucker!! There are 2. grrrrrr Crazy how something so small can cause soooooo much pain. Good riddance to you both!!!!
Glad that’s all over with! ! ! !
I continued with my next round of treatment the following day. I ended up with a horrible reaction to the adhesive from the tape they used to hold my IV in place. It looked horrible. It was itchy and red and looked like I had a disease. My blood counts didn’t look to great this time around. My hemoglobin is very low. If it drops one more point, I am going to need a transfusion to get it back on track. *sigh* I don’t want anymore issues. They said this is why I have been super tired and not getting any sleep. My sleep medication (trazodone) isn’t working at all and it’s making me feel like a zombie and I have been getting awful cramps in my calves at night. They told me to take the Ativan (lorazepam) to help me get some sleep. (those don’t help me, they keep me wide awake). They also gave me yet another medication (potassium) to take for the leg cramps. Geez, soon I’m gonna have my own pharmacy.
When it was time for treatment, I was telling my oncology nurses about my ER ordeal. One of them told me that I had been through more shit than most chemo patients. And it’s like, “what the hell,” I didn’t ask for this!! Oh and at this point I have lost 17 pounds. That’s in 3 months! Actually, less than that. I blame that all on the mouth sores I was having. They haven’t returned and I hope they never do. I haven’t been at this weight since I had my son. That was 13 years ago! I can’t keep my clothes, any of my bottoms, on my hips anymore. They slide off.
Well, treatment went well. 8 more to go 💪 I can’t f***ing wait!!! Soon, I’ll be half way. A little less than 2 months to go. I’m getting sooo anxious. I hate this journey with a passion that my life got put on but damn has it been an eye opener 👀
Life is way too short.
Steroids have me up. It’s 2:30 in the morning and I can’t sleep for shit. So I guess I’ll do some cleaning til I can fall asleep. The cats are looking at me like I’m out of my mind and the dogs can’t figure out why I’m awake. haha
June 16 – Soon I’ll be on the down hill side. Everyday I get more and more anxious. The minutes of the hour and hours of the days seem to just tick tock on by. I can’t stop thinking about getting to the end. That’s all I ever think about. Plus I keep thinking about maybe taking myself out of work. Every week gets harder and harder. And I haven’t had a good sleep since I started chemo. It didn’t help any that I had major insomnia before all of this. I complain about not getting sleep every Thursday that I come in. The doctor that is taking over today ( cuz mine is out of the country for the month of June) suggested I take 3 pills of the gabapentin at night to help me sleep. I don’t like taking that many, but I’ll try it.
Uh oh – I have a mouth sore. I hope they are not coming back. Mouth sores are the worst. It is just one, but it is painful and it’s in a spot that makes swallowing my food difficult. The heat wave that we’ve been having lately has been dreadful for me. It is already super hot out but all this medication seems to make my body temperature rise. Nothing seems to cool me off. And I started to get hot flashes really bad. A side effect they told me that I would probably get half way through chemo. So, there is always something to make me even more miserable than what I already am. Summer is going to be awful! On a positive note – I think I’m starting to grow some fuzz on my head 😄
June 22 – Blood counts are still hanging low but it hasn’t dropped any lower from the last time. I’m still so tired and the sleep deprivation is really getting to me. It’s bringing me down and making me feel depressed. Some days it feels like I can’t function. I.NEED.SLEEP!! I told this to the medical assistant and to the doctor AGAIN. I said at this point, I need a tranquilizer. I don’t care if it puts me out for 3 days. I need something to help me sleep. The extra gabapentin that he suggested I take the week before made my heart racey, so I decided against that. The doctor was going to look into giving me some ambien. I don’t care as long as it helps me to get some sleep. Going through chemo and trying to work but not getting any sleep is not going very well. I am always so very tired. I get treatment, get a prescription for ambien and I am on my way. I hope it works.
*sigh* I got another mouth sore and the other one has not gone away. Now I have 1 on each side of my mouth 😖 I think my eyebrows started to thin out 😦 this is very upsetting.
June 29 – Hasta la vista baby. Kicked # 6 in the butt. Only 6 more left!!! Yay 😃 Now I can honestly say I’m on the other side of that mountain I’ve been climbing. I can finally see a very tiny hole of brightness at the end of the tunnel.
That’s me!!! Driving to the other side of the hill with my foot on the gas pedal!!! With the smoke coming out from the back. Almost there!!! Thank God!
They told me I was going to get more and more fatigued. The accumulation of the chemo will start to wear me down even more. Fatigue is awful. It is way different from being tired. I would rather be tired than fatigued. The hot flashes are getting worse and worse and they seem to happen more in the middle of the night. The tips of my fingers and my feet started to get tingly. They said this would happen, it’s neuropathy, another side effect. My fingers bother me very much at work. The ambien seems to be working some.
July is here!!!! Do you know what that means? I only have one month of chemo left!!!! YAY!!!! Such a weight has been lifted off my shoulders. It really changed how I’ve been feeling. It gave me like more will power, like a boost. Just knowing that I’m almost there. A few short weeks away. That crazy anxiousness is gone. I mean, I’m still anxious but not that out of control one where it seems like I was counting the minutes. I seem more calm. At ease. It’s been rough. I’m so ready to get to the end.
July 4 – I had to leave work early today. On my last hour I got sooo dizzy I thought I was gonna pass out. The standing is getting really hard for me and the hot flashes don’t help. I just need to rest. I really need to take myself out of work. I’m making it harder on myself. I think July 31 will be my last day if I can make it til then. I’m so fatigued. The tingling on the tips of my fingers is traveling through my whole fingers now and my feet feel they have ants crawling on them. I got home and rested a bit before my brother and his family came over to have a small BBQ. This will be the first year in 10 years that we don’t throw our annual kickass 4th party. I just couldn’t. I didn’t have the energy or the want to host a party or have tons of people over. Everyone looks forward to our 4th party. It just wasn’t gonna happen this time. It’s gets me tired just thinking about it.
July 6 – Round 8 over and done with. 4 more to go!!! And I have really great news! Doctor can’t feel the lump anymore!!!! Yesssssss!!!! I’m gonna cry. Chemo is definitely doing it’s job. The news gave me like renewed energy and strength. The final lap. It should be all gone by the time I’m done with chemo. and guess what??? OMG. . I have peach fuzz all over my head. It is very thin but it is coming out. Eeeek, I can’t wait to have my hair back. My eyebrows are getting thinner 😦
The nueropathy is getting worse. They lowered my dose of chemo for this round (9). This can cause irreversible nerve damage if it gets too bad. I don’t want to have to do an extra round of chemo. I want to stay on track with it. My fingers hurt a bunch now and my feet feel like they are swollen and of course tingly all the time. The mouth sores are still there and not going away. At least I haven’t lost any more weight.
July 15 – When you’re having a good day, you have to take it and run with it. Today I was feeling pretty good so I took my son on a movie date. Wonder Woman!! Time to see some girl power!! She’s hot! yes, I said that.
Ever since we got back from the movie yesterday, Dominic has been in a weird mood. It like came out of no where and I don’t like it. When I ask him what’s wrong, he just shrugs his shoulders and says, ‘nothing’. Something is not right. I can feel it. It’s a Mama instinct. There are times where it seems like he doesn’t want to be around me. I sit with him, he goes outside. I go outside, he comes inside. He’s avoiding me. He barely sits with me to have dinner. He gets bugged with me every time I ask what’s wrong. It gave me a very uneasy feeling. It was upsetting for me. It brought me way down and made me cry. He’s struggling with something.
The next day – He is still feeling the same. He’s in such a funk. He doesn’t want to talk or be around me. He is so down. Me – “is everything okay?” Him – “yeah” Me – “are you sure?” Him – “yeah” his answers are very short. Me – “you would tell me if something was bothering you, right?” Him (shrugs shoulders) Me – “you can tell me whatever it is”, Him – he leaves table to go outside. I started to worry so much about his mood and this funk he was in that I put ALL of my medications away and out of sight. It scared me. Something was bothering him, really bad. I don’t ever think he would get into my pills, but to be safe, I put them away. This is how worried it got me. Something was just not right. My heart was very unsettled with the way he was acting. I told him, “I know you’re getting irritated with me asking if you’re okay every little while, but that just means that I love you and that I care if something is bothering you.” I think he’s overwhelmed 😦 He watches me everyday and what I have to go through. This whole summer he has watched me spend all of my time in bed or in agony with something. He would peek into my room to check up on me and ask if “I’m okay?” That has been our life. I am ALWAYS in my room. It’s getting to him, I’m sure. When I come home from work, he listens to me talk about how tired I am. Complaining about being tired, not having energy, trying to take time off of work being stressed. All of it. He sees how hard I’m trying and how tired it all gets me, especially with all the surprises that pop up, (shingles, kidney stones). He doesn’t have an outlet for everything we’re going through. He doesn’t have that other parent for support. We are dealing with ALL of this together. He has to be scared, I know he is. This is too much for him. He’s used to me being full of energy and doing things all the time. Now we don’t. He needs to spend some time away from me. My brother invited him camping. He needs this. He needs a break. I told myself, I would stop talking about this to him. But I share it all. I don’t keep anything from him even if it is bad. I wouldn’t talk about treatment or anything from this topic anymore. I would let him breathe. I need to stop staying in my room no matter how tired I may feel. I need to get myself out there with him more and more. We’re both overwhelmed and that too, is accumulative. I believe he was depressed. His funk and my worry lasted for 4 days straight. Always remember, I love you!!!
I’ve been so stressed with work, home and things financially. My heart is set on taking myself out of work at the end of the month. By this time I should have put in enough hours and a year will have passed since my last leave. So I hope it all works out. I need time off. I need to let my mind, body and soul rest. I need time with my son. No work, concentrate on me. Get healthy again. Stop wearing myself out with work. I let my store director know what my plans were. July 31, I can’t wait. I will take myself out of work. I refuse to put myself through this misery for surgery and radiation, not gonna do it, not gonna work through that. Can I do it financially? Not really, it’ll be very hard, but for ME and my son, I need this. WE need this.
I haven’t had any more issues health wise. I’m hoping my kidney stone was the last of the horrible surprises. The fatigue is definitely accumulating. That’s why I’m looking sooooo forward to time off of work. The mouth sores still make it difficult to eat and swallow. The summer heat makes me feel like I’m overheating. At least the pool feels wonderful. It washes away all my worries when I get in. Water therapy is the best. All of my shingles and the pain have gone away. But looks like I will have awful scarring. The area is still painful to the touch and my back seems to bother me more often these days.
I know everyday will get better. One day at a time. I keep telling myself that. 2 1/2 more weeks for my leave from work and 3 weeks til my last chemo. I’m sooo drained and worn out. My body and mind can’t take anymore. I talk with MaryBeth about my time off from work. About all of my hours that I needed and how long I can be out. Oh how I can’t wait. I really need this time. This time to focus on me and my son. Time to heal, breathe and to get back to 100%. My time off will be right around the same time as my last chemo. I timed it just right. Now that I finally made the decision, I can’t believe how much I’m looking forward to it. Now to just get through these next 3 weeks. I’ll be home free. Treatment will be over and I can just relax without having to worry about going to work. I can spend some time with Dominic before he goes back to school. That will give me 2 good solid weeks with him. At least I’ll get to do that. I’m almost there!! I can do it. I see light at the end of the tunnel. Time off is right around the corner. Maybe I’ll take a few months. Who knows. It’s slowly falling into place. I.JUST.CANT.WAIT!!! YAY!!!!
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.
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!!!! 🙏 💪 👊