My day was going sooo good. . . . .
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!!!!
What do you mean I can’t take leave from work? ? . . . . .😫😭