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!!!! 🙏 💪 👊
Today is a day I thought I was prepared for but nope. . . I sure wasn’t!!!
Surprisingly, I felt very good today. Didn’t feel tired or nauseous. Didn’t feel any of that weakness or drained out feeling, just had knots in my stomach. Since I had no choice but to chop off my hair last night, today would be the day I would go to work with a new haircut and color ( my wig ). Let’s see how that goes. I can tell you right now, I don’t feel comfortable at all!
Got to work, nothing was out of the ordinary. It has been FOREVER since I have done anything different to my hair, so naturally, EVERYONE noticed the new ‘change’. To make me feel more at ease around my co workers since they were talking about the ‘cut and new highlights’, Penny blurted out, “you finally went and did your hair!!” I was glad for this because I felt sooo uncomfortable 😢 and just didn’t feel like me. It seemed like I stuck out like a sore thumb. It probably would have been easier to tell everyone that I lost my hair to chemo but to keep my life at work as normal and low key as possible I decided to play the charade of having a new haircut. Penny said I looked great!! Here is a pic she took of us.
I got a ton of compliments and even got asked out on a date, haha, but I just wasn’t comfortable and since I was new to wearing a wig it felt like it was gonna slide right off of my head. It didn’t help matters any when one of my coworkers said it looked like a wig. Oh the stress of the day had me worn out. In time, I’ll get used to the new me and I’m sure I’ll be flipping my new hair in no time. But today was horrible even though the picture says otherwise. I need to be able to feel like me and I just didn’t. My day felt like it was never gonna end and I couldn’t wait to leave work. I went home and cried my eyeballs out. I was so overwhelmed and I still have months of this ahead of me. Penny always knows just what I need to make me feel better. So, she sent me this. . .
Its almost mid week, this is when my low point hit me the last time. Tuesday, I have training classes and they’re upstairs. Geez, never thought it would be so hard to climb stairs! I think my no energy level is starting to kick in. I felt like I was floating, but in a bad way, was not a good feeling. I left work exhausted!
Wednesday – man, I just do not have energy and I have to go to work. I didn’t sleep well at all and my scalp has been hurting, it is so dry and tender. I don’t have the luxury of having the week off like I did the last time I felt this way. As if on cue, the mouth sores, dry mouth and blurry eyes are all back. and once again, the food tastes nasty. This is gonna be rough. Getting ready, I really have the shakes and can’t even get my makeup on. I needed to sit down and rest. Finished getting ready and managed to drive myself to work, geez, what was I thinking? I’m never gonna make it through today. I’m already so tired and my day hasn’t even begun. I can barely even stand. Please get me through the day.
Don’t know how I did it, but I barely made it through my 8 hour shift. Walking out to the car, I cried from being so very tired. I can’t believe I still need to drive myself home. I just don’t have the energy, also there is a part of me that is very stressed out. Tomorrow I get results from the genetic test I took to see if I’m a carrier of the cancer gene. My mind and my soul just hasn’t been able to catch a break. I had to have a meltdown when I got home. and all I did was lie in bed the rest of the afternoon. It felt like I couldn’t move. My head (scalp) has really been hurting. I’ve come to the conclusion that the very little hair that I have left is just dead hair. Dead hair attached to my scalp and it feels like wire, like a brillo pad. I think this is a big part of why I can’t sleep. It hurts to lie my head anywhere, the sofa, a pillow, it just hurts 😦 I honestly can’t wait to shave it all off. Never thought I would ever catch myself saying that. I’ve already lost the majority of my hair due to my hair follicles dying out because of chemo, whatever is left is just dead, stiff hair.
Thursday – I feel even worse! This is worse than the last time! They did tell me that with each round, the tiredness and weakness would be accumulative. Man, they weren’t kidding. There is no way I can make it through an 8 hour day at work. Thank God, MaryBeth offered to do half of my shift. I told Ted I wasn’t feeling well. (Ted is my lead supervisor and he has no idea what’s happening with me) There are only 4 people at my work who know what’s going on. I left with relief and went home and crawled into bed til it was time to go meet with Karen to get my test results. I’m still so stressed about that.
RESULTS!!!! Sitting in her office had my heart going 100 mph. I’m so on edge. Results are negative!! I’m so relieved, I burst into to tears. I am not a carrier of the gene 🙏 woo hoo!! I cried in her office, cried all the way home and cried more at home. I needed this relief. I needed some good news. Now, to get through this low point.
Friday, just like before, my energy came right back up and I was back to being me. MaryBeth and I had made plans to shave the rest of my head. So, I met up with her to take care of that. I thought I was gonna cry and be hurt that the rest of my hair would be gone and now I would truly be bald, but to be honest, it was such a fricken’ relief when it all came off. I didn’t realize how much it was hurting my head til it was gone. It even hurt as it was getting shaved.. I was already getting sores on my scalp from the dead hair. So a bit of advise to anyone going thru this. . . . don’t be dumb and wait like I did to cut your hair or shave it. Do, it right away with the 1st rounds of chemo. I put myself thru pain and misery trying to hold on to my hair. No matter what, I was gonna lose it and I did. Now, I can actually put my head on a pillow without it hurting me.
I do have some good news!!!! That constant pain that I was having in my right breast where the lump is at is now gone! Yes, gone. I’m gonna take that as a good sign that the treatment is working. I have had pain in that right breast since like last September and now it is gone!!!!!! Can it be true?!?! I sure hope so.
Round 3 – As much as it doesn’t seem like it, it’s really going fast. I can’t believe I’m on round 3 already. All hooked up and getting infused. Some of the mouth sores have traveled to my lips but no matter how hard I try there is just nothing I can do about that. They come with every cycle 😩 Here are a couple of pics while I’m getting chemo.
Grapes and I do this together. I get hooked up on the upper part of my chest. You can see it a bit over the rim of my shirt. One more of this intense cycle and I move on to the lighter chemo. Even though there are points where it seems like I don’t even have the energy to crawl, I have to admit I’m fighting this like a boss. Yes, it brings me to low as hell points but I refuse to let it take me down. Not gonna happen. I have one more devil infusion to go. I was told that when I switch to the other chemo my mouth sores should go away ( I really hope so) It makes it very difficult to eat and because of that I have already dropped 10 pounds. That’s in 1 month. and that big dip of little to no energy should go away. I really hope that’s true too!!!
I felt so good a couple of hours after chemo that my son and I decided to go out for dinner. We met up with Penny and her husband and had a great time!! I wish I felt this good all the time. In a few days I’ll feel like hell. Tonight, I’m going to enjoy it to the fullest! And today was the best I have felt with my wig. I actually felt pretty. If I wouldn’t have told you, maybe you couldn’t tell that wasn’t my real hair. Who knows, but yes, that is my wig.
5 days later – ugh. . . here comes my low point. Wow, it gets worse and worse with every cycle. If I thought I didn’t have energy before, I really don’t have any now. I was struggling with not feeling well at work and Ted started to notice this was happening a lot. I literally didn’t have the energy to hold my own body up and I was starting to breathe heavy just because of the effort it took. I told Ted I wasn’t gonna make it through the day and needed someone to cover the rest of my shift. I almost started crying right then and there because of how horrible I felt and the fact i couldn’t stand. When I went on break I finally made the decision to tell him, so my store director, Clara Sue and I pulled him into the office and gave him my news. He needed to understand why I was feeling this way and why I needed to go home. But at the same time I didn’t want my news to become public throughout the store. He was speechless and I knew he would be. But oh how I needed to leave. It took all the energy I had to walk out the door and get to my car. Now, I still needed to drive home. oh gosh, I really hate this!! Got home and barely made it into the house to crawl into bed. I just need to rest. I’m sooo tired. My low point lasted to the end of the week. Its getting worse and lasting longer. I even felt a little low on Sunday which is very unusual, I’m usually back to normal by then. Not this time.
Round 4 – April 27th – today I have to visit with the doctor. He needs to examine me and see how things are coming along. I hope it’s good news. He does his examination, I feel no pain to the touch. This is very good news for me. Cuz that lump has been a painful asshole. He also tells me that he feels it has gotten smaller. YES!!!!!! That is VERY good news. The treatment is doing its job. Now to keep an eye on it and hope it shrinks all the way. I’m so happy with this news and also happy that this is my last double chemo. These 4 rounds have been truly hard. The doctor has a hard time believing that I’m still working. When I leave the cancer center I can’t help but feel, I’m done, I’m done, I’m done. Those 4 big ones are over. Now to start 12 weeks of the next one. My battle is not over but it should get a bit easier. I was told with this chemo, that my hair could start growing back mid way, in peach fuzz form. That the mouth sores should go away and my energy be a lot better. I wanna believe all of that. The mouth sores have been my biggest gripe and I’ve lost a few more pounds. I can only hope it gets better.
Round 2 – Mar 30th
And so the ride begins. Round 2 has arrived. I’m not sure if that went quickly or if it took forever. It’s very hard to tell with everything that happened in just 2 weeks. But here I am, gearing up for another dose of the ‘red devil’ and it’s companion Cytoxin.
As I brushed out my hair this morning, more came out. Just in lots of strands. Its Thursday, 2 weeks exactly since the start of chemo and there goes my hair. I’ve come across a few wigs to wear during the time I won’t have any, but a wig just isn’t me. I’ll have to get used to it cuz I’m not ready, by no means at all, to rock the bald. A couple of them look just like my hair, but I feel like I stick out like a sore thumb. Like if everyone will be able to tell. I guess we’ll see what happens.
As always, the nurses at the cancer center are wonderful. Once again I opted for a window seat to look outside. This time I had a great view. The scenery seems to ease my soul. It’s tranquil.
My Chemo pole 🤢
My brothers and Clara Sue helped to keep me distracted while Sarah administered the ‘red devil’. I really do dislike that one. I mean, I dislike all that is happening to me. But that adriamycin, I really don’t like. I can’t help but feel that one is gonna cause me lots of grief. During my infusion I was very happy when a dove came and perched itself on the wall. I love doves. When I see doves I think of peace, the holy spirit. So it brought a smile to my heart and soul and eased my already troubled mind. It stayed there for the longest time as if keeping a watchful eye until it flew away when a gardener was taking care of things.
The burning sensation from the Cytoxan was there again. It lasted about the same amount of time then it was gone. I was prescribed an anxiety medication in case it came back strong like it did the last time. Just to have on hand and to take when needed. For the most part, I left feeling good, just a bit tired. Nothing major. Sarah once again informed me strongly it was time to cut my hair like really really short since it was starting to fall out. That way I wouldn’t have to go through the agony of watching it fall out in globs. I heard what she had to say but did I listen? Round 2 complete. YAY!
The following day, I felt like a normal person. A bit of anxiety when I woke up but it soon went away on its own. Blurry eyes have slowly returned and my mouth is dry. Yuck, here we go again. My mouth is very sensitive and tender and had to switch to a soft tooth brush and have to be careful when brushing. I went about my day. Couldn’t sleep for the life of me that night.
Saturday, April 1st –
Got up feeling okay. Blurry eyes and dry mouth are in full force. Either it’s the chemo or all the premeds including steroids I’m given or just a combination of it all. All I can say is. . . . I don’t like it at all. I won’t keep complaining about not being able to see or how awful my food tastes, I’ll just leave that right here. Just know that’s how it is. I spent some time styling 2 of the wigs I had knowing I would be wearing them soon. I tried to get the cut as close to my own hair as possible. I guess it’ll be okay. Still don’t wanna wear a wig but oh well that’s how its gonna be. Later that day I took a shower, washed my hair. . . . OMGeeeeee!!!!! *GASP* My hair came out in GLOBS 😭 literal globs. I couldn’t believe it! It was non stop every time I ran my fingers through my hair. It came out so much that it bunched up and just tangled in a huge knot. I couldn’t put my fingers through anymore. I did my best to wash that tangled glob at the end of my head. Oh why oh why didn’t I listen to Sarah?! Now I understand when she said to cut it short. I wouldn’t have to go through this! It broke my heart, there goes my long hair. No people, it is not just hair when it comes to chemo. People say that all the time, ” it’s only hair, it’ll grow back”. Well, yes it will. But when you lose it and it’s not your choice to, no, it is not just hair. It is a part of you, how you present yourself to other people, like the clothing we choose to wear. So, if you know someone who is going through chemo, please don’t ever tell them it is just hair and it’ll grow back. Have some compassion and know this wasn’t something they wanted to happen. Trust me.
As much as I didn’t want to but needed to, I had no choice. I gathered that glob of tangled hair, got a pair of scissors and with my heart in my throat put it ponytail like, took a deep breath and chopped it off. I didn’t make my new haircut look pretty, it was all gonna fall out anyway. But it was super short, like boy short and there was my hair. I was holding it in my hands, all of my hair except for the little bit that stayed on my head. It took 2 weeks and 2 days for this to happen. Chemo wastes no time. I felt like a whole different person even though in my heart I was still the same. A sadness took over, I needed to get used to the new me. But its happening so fast I don’t even know where to start.
Oh the emotional distress your heart and soul go through is unreal. And all the new things you are forced to get used to. It really is hell and as I said before. . . this is only the beginning. The only thing you can do is soldier forward, keep a great attitude and make the best of your new life. I walked over to my son in the other room with my glob of chopped off hair in my hands and showed him my new haircut. He was totally shocked at what I had to show him but he gave me a huge boost to my confidence when he said, “your short hair doesn’t look bad at all, it looks good”. Oh how I needed to hear that 💖 But after that moment I would no longer show my hair or my head.
The turmoil that my heart was in was on overload. I am doing my very best to cope with how things are going and trying to keep that positive outlook. But some days you are just not prepared for and today was one of them. I’ll get used to it, it’s just not gonna be today or tomorrow or the day after that but someday. For now, I’ll just be in my own private hell till things get better. Tomorrow I go to work and I don’t even know how I’m gonna handle the day, I’m just not ready. I’ve told no one but my son. *sigh* I guess we shall see.
Day 1 (Mar 17th) – The day after round 1 of chemo. I couldn’t sleep a wink. Anxiety had the best of me. 2:30 in the morning and I was looking for someone to talk to or text. I just didn’t wanna wake anyone up. I was WIDE awake!! 😲 My heart was racing to nowhere and just wouldn’t slow down. Is this how it’s gonna be? I should be exhausted from my day and out like a baby. Instead, I was tossing and turning and expecting at any moment to feel like shit. Honestly, I felt the same physically. Nothing was different, I didn’t feel sick. Other than anxiety and getting no sleep, things felt the same. I was mentally exhausted, for sure! Ever since Feb 13, this day has been cemented and burned into my mind and my soul. I have dreaded it, wished it away, cried about it, hoped it wasn’t true, yet it still came. It still came, and guess what, I survived it, I’m still here and I’m still me and round 1 is all over. Oh, the horror my mind put me through. The situation is a horror all in itself, but my mind has drug me through the mud. It doesn’t shut up, even now. I really did mean it when I said before our minds can be an evil place. My mind has made the situation MORE of a nightmare and doesn’t let me have peace, if that is even possible in times like these.
I got up and went about my day like any other Friday. It was St. Patty’s, so naturally, I dressed in green. Looking a bit tired and frazzled.
I dropped my son off at the bus stop and had errands to run but my anxiety was off the charts and my mind was going 100 mph. I text my brothers’ GF to see if I could pick up my niece to take my mind off things and she agreed. Thank the Lord!! I needed to be with someone. I didn’t wanna spend the day alone. I picked her up and we did my errands together. My anxiety disappeared. What a little life saver my niece was. I had no anxiety the whole time she was with me. By the time we finished and had lunch, I was completely exhausted, it finally hit me. Wow, how I needed sleep. But as long as she was awake, there was no getting any unless she slept and she didn’t. By the time she left, it was almost time to go in for my Neulasta injection. I will need to get this injection the day after every A/C infusion.
Neulasta – Bone marrow stimulant. It helps the body make white blood cells after receiving cancer medications. It helps to reduce the chance of infection due to a low white blood cell count. I call this a booster shot.
This visit wasn’t long at all. I was in and out in no time. The injection was given to me in the fat of my belly and I was sent on my way. Wow, that was simple and no pain at all. Maybe all of this won’t be so bad. Wrong!!! Later that afternoon, I was talking to another one of my Aunties’, my Auntie Diane and while speaking with her I was hit with a horrible anxiety attack that seemed to last forever and I couldn’t breathe. I think today’s injection and yesterdays chemo and of course everything else, finally got the best of me. My anxiety hit an all time high. By the time we ended our conversation my anxiety attack was gone, good thing I had someone to talk to. sheesh, I don’t like this at all 😢
My mouth is starting to get very dry and my eyes are getting blurry. I must be very tired. I would love some sleep, maybe tonight. Anxiety, please leave me alone.
Day 2 – Nope, still no sleep and my anxiety hung around and didn’t leave me alone. I woke up with my mouth extremely dry and my eyes more blurry. Geez, this no sleep is making my eyes very yucky. It’s hard to focus. Other than that, I still feel like me, normal. I don’t feel sick, my tummy feels fine. I did have to take my at home medications. – 2 pills of dexamethazone and 1 claritin. The dexamethazone I will need to take for 3 days after chemo and the claritin for 7 days.
Made myself breakfast. Gross!!! It tastes awful! Not even water tastes the same. It all has no flavor, like cardboard. And the dry mouth doesn’t help at all. Oh no, is this how it’s gonna be? Not being able to taste my food or drinks? 😭
Tonight my son and I have a dinner date with Clara Sue and her husband. It’ll be nice to get out and hang out to get my mind off of everything that is going on. Can’t wait.
On the drive to her house – wow, I’m really having a hard time with my eyes, they are soooo blurry! What the heck?!
Dinner time – I can’t taste my food at all 😞 and the soda is awful! Water doesn’t even taste good and I LOVE water. It’s not her fault, I’m sure her dinner was great! My mouth is unbelievably dry and nothing soothes it or quenches it. Food feels very pasty and thick. It must be the chemo or the medication. I hope it doesn’t last. I love food. However, I did really enjoy getting out and the company, that was the best part.
On the way home – OMgoodness! I almost can’t see at all!! It’s late and dark and my eyes are deceiving me horribly. We’re on I-40 going west and I can’t see for shit!! The blurriness is awful and very dangerous if you’re driving. Please get us home safe.
Made it home safely, thank the Lord!! I don’t think I’ll ever drive at night again while on chemo. That was awful!! Time for 2 more dexamathazone. Nope, water still tastes yucky. It’s time for dry mouth rinse. I found this mouth rinse at my work and boy what a relief. Too bad it only lasted a while. Guess I’ll be rinsing my mouth quite often. Water actually tasted good for a moment. But it didn’t last long. But this will give you momentarily relief. I suggest it. It is a store brand of biotene, just a lot cheaper, but same effect.
Day 3 – I still didn’t sleep very well but I got up, got ready and went to work. Yes, I went to work. Other than feeling a bit tired I felt absolutely normal. Didn’t even feel sick. No one at work suspected anything and I didn’t miss a beat. I was still my happy self. I won’t let chemo change me, I am still me. You couldn’t even tell I had just went through an intense round of chemo just a few days earlier. My work family who know were actually very surprised. I refuse to let this change my life. My life will continue to go on as planned. It just got monkey wrenched but that will be temporary. Positive attitude Sue, gotta keep that positive attitude. Work will be good for me and keep me from thinking too much. I need to engage with my customers and coworkers to keep me sane. I’m gonna try working as long as I can. But after today I will be on spring break with my son. I need this time off to give my mind, body and soul a break. Things have been non stop since February. I need a break with my son.
My mouth is still extremely dry and my eyes are just horrible. Guess that’s the new norm 😧 Food just doesn’t taste good *sigh*
Day 4 – Spring break with my son, yay. Got some errands done and I feel pretty good, just a bit tired. But nothing too bad. Eyes are very dry and mouth is horrible. Hopefully some eye drops will help, cuz I need something. And food tastes nasty. When will this go back to normal? If all goes well and I feel okay, my son and I are taking a day trip to Chimayo, NM with Clara Sue and her husband tomorrow. I can’t wait to get away.
Day 5 – day trip, yay. Almost a 2 hour drive, wow that tired me out and I wasn’t even driving. Santuario, my son has never been here and I haven’t be here in over 20 years. Loved it. My son enjoying some quiet time next to a small stream. This warmed my heart. We so needed to get away from life.
We went to a restaurant close by for lunch. It smelled so good and I was starving. Yuck!!! This was the worst my food had tasted! The dry mouth has taken over horribly!! My mouth was so dry I couldn’t even break down my food as I was chewing it. It seemed like I was eating rubber and no matter how much I chewed I just couldn’t break it up. The soda tasted nasty and so did the water. But I forced my food down my throat for the fact that I was so hungry and needed to eat. We left, stopped at a couple of places before making the drive back home and by this time I was totally wiped out. Holy cow I was exhausted! I almost couldn’t hold myself on my own 2 feet. I was drained!! I hope it was just from the trip.
Day 6 – I thought I would get some good sleep cuz of the day I had but nope, I woke up completely drained and wiped out. And it wasn’t a normal drained and wiped out either how I used to know it. This was different. This was a very different kind of tired. I laid in bed ALL day. Something I don’t ever do. I’m always doing something. Not this day. It took effort just to move. I was told for my chemo session that I would hit a very low point about 6 days after my chemo, well here we are on day 6 and I think it hit me. I thought maybe I just had too much day yesterday. This was awful. I have no energy and I don’t wanna do anything. I.am.so.tired 😢 Dry mouth and blurry eyes continue. Eye drops don’t help at all.
Day 7 – One whole week after chemo. OMG I feel like total shit!! I don’t feel sick, I feel wiped out like I’ve never known. The energy just isn’t there and feeling drained is off the charts. I have the shakes soo bad. It seems like I have Parkinson’s. I don’t wanna move from my bed. I have to go to the cancer center to meet with social worker and I just don’t have the energy and can’t see for shit. My eyes have gotten to the most blurry they have ever been in my life and the dry mouth is nonstop. I drive myself to cancer center and don’t know how I walked inside without passing out. I used up what little energy I had just for that and couldn’t wait to sit down. We talked and she took my information for some programs she thought would be helpful for me. I requested to speak to a nurse about my dry mouth and very blurry eyes and my loss of energy. She told me it was all part of chemo and that’s how it was gonna be. I need to keep myself on a good diet. And try to rest as much as I could. There was nothing I could do about my dry mouth but the mouth rinse and eye drops would not help. The chemo was killing all of my cells and it kills the fast growing cells first like your hair cells, mouth cells (saliva) and the wetness (natural tears) your eyes produce. It was something I couldn’t stop and something I was gonna have to get used to. And my low to no energy was a side effect as well. This was my low point and another thing I had no control over. It would pass after a few days *deep sigh* Please Lord, get me through this. I couldn’t think of a time I had ever felt this way. This was worse than having a full blown flu. I almost felt depressed.
Day 8 – I still woke up feeling the same, absolutely drained and without energy. Making something for breakfast took all the effort in the world so I just settled for a bowl of cereal, which later on upset my stomach to no end. I think it was the milk. I have never had issues with milk. Oh I hate this!!! On the upside, I think my dry mouth is getting better and I can taste a bit of food. I hope its getting better. I never imagined it would be like this. Good thing I’m not at work this week. But my poor my son, I haven’t done anything with him on his spring break 😢
I have never laid around so much. I finally had a small bit of energy by afternoon and my son and I had some chicken for lunch. Surprisingly, this gave me a huge boost to my energy and by the later afternoon all of my energy was back. I bounced right back after 2 1/2 days of feeling as low as I have ever felt. I actually ran some errands and so grateful to feel like me again. It was amazing how that low point came and went. From Tuesday afternoon to Friday noon, that’s how long it lasted then it was over. I was back to me, yay, I’m so happy.
Day 9 – I woke up feeling so good that my son and I took a day trip to Ponderosa to visit family that live out there. I was surprised with the way I felt. It was almost like the past week didn’t even happen but it did. The 1 hour drive was a piece of cake and didn’t tire me out at all. We enjoyed our day out there and my family couldn’t believe how well I looked for just having chemo a week earlier. I myself couldn’t believe how well I felt but boy was I ever so thankful. I don’t wanna ever feel like I did again. The drive home didn’t bother me and the rest of my day was awesome!! Wasn’t even tired.
Day 10 – Well, I woke up with a new side effect 😫 mouth sores. Ouch, do they hurt. They are open blisters on my gums. Man alive! Whats going on? I had no idea all of this could happen. Maybe I brought this on myself. I was enjoying sunflower seeds yesterday. Maybe the salt on them wasn’t good for me. My papers say that mouth sores are very common and can be very painful and get really bad. Well, looks like they landed right in my mouth. On the upside, my taste buds have gotten better and I can finally taste my food. Oh a coke tastes so good. But the mouth sores make it very hard to eat. And my blurry eyes finally cleared up. I can see. I guess with everything that’s good comes something bad. What can I do about it but find a way to live with it.
Day 11 – Woke up feeling great and went to work. Worked a whole day without feeling drained or tired. Life is good. Still no one suspected anything and I didn’t let on. My life was normal just like before. And being at work really took my mind off of things. My only gripe is that my mouth sores are multiplying and they really hurt and make eating near impossible. Guess I need to find a new mouth rinse for mouth sores now. *sigh*
Day 12 – Went to work again feeling great. Mouth sores are still there but my food finally tastes normal again and water and the blurry eyes are all gone 😃 My life almost feels like it did before Feb. 13th.
Day 13 – Got up to get ready for work, feeling really good. Got in the shower, washed my hair and it started falling out 😥 I ran my fingers through my hair and it came out in big strands, not globs, but big strands. This completely took my breath away. I knew it was gonna happen but I couldn’t breathe. No matter how much you prepare for it, you are never fully prepared and you have no idea until it happens how it’s gonna make you feel. I broke down in tears, in sobs, in the shower, looking at the hair I was losing in my hands. Every time I ran my fingers through my hair, more came out. When I combed it out, hair came out. I was so heart broke. I don’t want this to happen. But I can’t stop it. In a few days I won’t have any at all. Help me get through this, I’m just not prepared for this to happen. Yet I’ve known about it, talked about it, told myself I would be ready for it. Nah ah, there is no way to be ready for something like this. It shattered my heart 😭
March 16th – Chemo Day
Well, the day has arrived. It’s chemo day. The start of a regimen that will last me 5 months. It’s a day I have not been looking forward to but a day I cannot get out of if I want to get cured. I dread chemo sooo much and I have dreaded it since the day they told me I would need it. But here I am, my veins will be pumped with toxins that will kill all those nasty bad cancer cells but will also kill all of the good cells at the same time. Am I gonna feel like me once that happens? Am I still gonna be my happy little self or am I gonna be wasted and lethargic? They keep telling me, “everyone is different”, so they can’t tell me how this will effect me. They can only give me a general idea. Okay, i guess we’ll find out. So, into that black tunnel of unknown I go.
I am met with a nurse and was taken to the back. I have my posse with me to make it all better. I have Clara Sue, and both of my brothers, Jake & Ray. Let me tell you, having them all there made such a difference. Cuz to be honest, my feelings were all over the place. I had no idea what to expect and my mind was just going back n fourth. We did all the standard procedures – weigh in, etc. I am taken to the infusion center, interestingly, it is set up quite nicely. I was put all the way back in the corner, which at first, to my dismay, didn’t wanna be there. Hate being in the corner. But after a while, I actually liked it quite a bit. I was put by a window where i could see outside to their back courtyard/garden/patio which is very pretty and found it to be somewhat peaceful. It has different colored flowers and trees and the birds come to visit. I loved it there. I decided this is where I always wanna be, at a window seat to look outside. The nurse continued on to check my vitals and blood pressure and made the comment, ” your blood pressure is very high, your heart is racey, are you nervous?”
Me, in my mind, (well duh), then out loud, “yeah I am, this is my first time.” She didn’t say anything after that. After all of that, she got me set up with a blanket, pillow, made sure I was comfortable, told my people where to find all the goodies, snacks, and left me there til my oncology nurses came to get me all set up. In the meantime I was trying to get as comfortable as i could cuz soon there was gonna be an onslaught of toxins being shoved through my veins. I already want this day to be over. It’s very hard to face the unexpected. My little man is at school and I can’t wait to go home and see him. I hate the path my life has taken but you gotta face the cards that are dealt to you. After a few moments, my oncology nurses show up. They introduce themselves, Melissa & Sarah. They are very nice women and I immediately connected with Sarah. They come around with their rolling cart that seems to have everything in it and here we go, tons of questions. Medications I’m taking, what kind of cancer I have, my age, etc, you name it, they asked it. Now it’s time to get down to business 😧 I’m scared!! I’m just not ready.
They go over with me all the pre-medications I will need prior to chemotherapy. This first session will have to be very slow to make sure I am not allergic to anything and that I don’t get sick. Just the premeds alone will take about an hour to be administered. They have to access my chest port. This is where EVERYTHING will be given through. Prior to coming I need to put a ‘BLOB’ of lidocaine one hour before appt on my chest port and cover with plastic band-aid. This is to help with pain and discomfort when they access it.
Chest port Lidocaine
The picture of my chest port was taken 3 days post port surgery. Doesn’t look bad at all. My surgeon did a great job. When it heals completely, it should hardly be there. And the incision on my neck, you can barely see it. So, it’s safe to say that it’s all healing properly.
This is Grapes. Penny gave her to me when I was first diagnosed to lift my spirits and it did. Look at those eyes. I fell in love with her. She will be with me for every infusion, she is my ‘prayer’ monkey. And she’s even wearing my ‘hope’ cancer bracelet that the cancer center had given to me on my very first visit there. Yes, she is here with me today.
It’s time to start 😥 Melissa and Sarah are ready to start premeds. I have to take 3 different medications before I can have chemotherapy. Decadron, Aloxi and Emend. Like a said before, this is to help with those nasty side effects, like nausea and vomiting 🤢
http://chemocare.com/chemotherapy/drug-info/decadron.aspx, https://www.drugs.com/aloxi.html, & https://www.drugs.com/emend.html
Melissa is gonna be the one to give me my premeds. My chest port gets cleaned off of the blob of lidocaine I had put on, now it’s time to hook me up 😟 My chest port is accessed. Ouch, it was a small prick, but it still hurt cuz it’s only been 3 days since I had it put in, so the area is still very tender and sensitive. I’m hooked up, no turning back now. Premeds are started and this will take about an hour.
Premeds went well. Not so bad. Now it’s time for the real deal. Chemotherapy time 😥 Melissa says she’s going to get suited up and she’ll be ready to start. Suited up for what?? I’m starting with the chemo A/C, this is 2 chemo’s in one, a very intense one. I hope I do okay with it. They were explaining to me that in exactly 2 weeks I will start losing my hair and it was advised to cut it short before that time. I’ve always had long hair. I’m not ready to lose my hair but I can’t stop that from happening, let alone losing ALL of my hair. It’ll start slowly falling out then it will come out in globs. That’s gonna be a real shock, another sucker punch I’m sure. *sigh* Melissa comes out suited up practically from head to toe, goggles included. Geez, what’s really gonna go into my veins?? The drug is brought out as well. This made my stomach turn just with the packaging it came in. The ‘caution’ label alone threw my stomach into somersaults.
I don’t think I’ve ever seen a syringe that big. . . AND there were 2 of them!! Holy moly!! This will be administered by Melissa, slowly. I have officially labeled this one the ‘red devil’. How proper, since it’s red. Now this red devil will be entering my body every 2 weeks. Here we go.
‘I can’t explain the look on my face. I don’t know if I’m pissed off, in deep, deep thought, scared to all hell or what. But I can definitely say, it looks like I’ve aged years. It doesn’t even really look like me. There goes the red devil, invading my body, twice. I had it in my head that this was gonna feel like acid entering my body. That it was gonna hurt and burn as it went in. Honestly, I didn’t feel a thing, didn’t feel any different and no, it didn’t feel like acid. What your mind can put you through *sigh* sometimes your mind is a very evil place. After a while, that first drug was over and done with, nope, didn’t get any reactions to it, so I guess I did okay with it. Now for the next one, Cytoxan, this will be an IV drip that will probably take about 30 minutes. I was told that I will get a burning sensation in my nose like if I took a big woof of pepper, then it will go away. That’s a weird side effect. Again, it came out in the same hazardous packaging. ‘CAUTION’
This one didn’t seem as bad as the red devil, it just seemed like I was getting IV fluids, if that were only the case, I’d be much happier. Anyway it did’t feel like I was getting acid either and sure enough about 20 mins in I got an awful burning in my nasal passage that made me very very tired. It lasted for the rest of the infusion and I felt like I needed to sleep right then and there. Finally that was all over and I was unhooked and my chest port was flushed out and bandaged up. Man alive, I needed the bathroom horribly and I was told not to freak out cuz my urine was gonna be red from the adriamycin for the next couple of days and sure enough, it was. I was also told not to hold going to the bathroom. That it would be very dangerous for me to let those toxins sit in my bladder for too long. So, when I need to go, I NEED to go. No, dancing around til I find the time. Gotta let it out.
I can officially say, first round of chemo, DONE. I was told that I did great, I guess so. 3 more of those big boys and that’s all over. All in all, that all lasted about 4 hours. It was a long visit. But they said the next ones won’t be as long. It’s the first one that always takes so much time.
As I was gathering my things to get ready to leave, Sarah, one of my oncology nurses came to give me a necklace. She explained to me that it was from another lady who had been where I was now and she is a breast cancer survivor. She had left it at the cancer center with instructions to give it to the next woman who was newly diagnosed with breast cancer and that woman ended up being me. So, Sarah gave it to me and said it was from a cancer survivor. Oh how that warmed my heart. Thank you kind lady, it boosted my already down spirits. I LOVE it!! My goal is to be where you are. A survivor 🎗💖
I left feeling like a normal person, just very tired and still with the burning sensation going on. That lasted for another hour and it was all gone. On the way home I texted my other loved ones that I was done and it went well. The rest of the night, I felt as if nothing had happened, until later. I didn’t feel any different other than having anxiety. That night it hit an all time high and had a hard time sleeping. However, I was glad that this day was finally over. I was glad that I was able to come home and say, 1st round, DONE. I couldn’t wait to cuddle with my son, I so needed that. I couldn’t wait for tomorrow, just to put today behind me. I couldn’t help but anticipate how I was gonna feel. Will I wake up sicker than a dog, will I wake up feeling okay? Oh how I couldn’t shut off my mind. But, I was thankful that everything went well but I sooo wanted today to be over and a new day of sunshine to come my way. A new day is just around the corner. I hope I feel like me.
March 15 – Chemo Class
Today I have to attend chemo class. I guess there is a lot to learn about receiving chemo? So here I am at the cancer center with MaryBeth ready to learn about all the toxins they will be putting into my veins and all those nasty side effects I’ve heard about over the years from other chemo patients. My nurse navigator is here to explain it all.
We start off with a whole bunch of stuff she brought out for me to look over. Several booklets and a bag full of useful stuff I may need.
First we go over all the symptoms I need to watch out for after receiving chemo:
Sores in the mouth? Ouch, ( the picture they gave me looks awful and painful) I hope I don’t get those.
Side effects to be aware of ( every patient is different and not all experience the same thing)
Sheeesh!! Sounds miserable! How does one make it through with all those side effects and this it what I have to look forward too? For the next several months? 😟
I’m no longer able to take anything containing Ibuprofen. Tylenol only!! I can’t use anything that has alcohol in it ( mouthwash, hand sanitizer, etc.). And. . . .I could even have nerve and muscle damage. Totally not a walk in the park and I have to endure this just to get better and cancer free? *sigh* I guess it’s better than the alternative.
Here is my treatment regimen: A/C + Taxol
Fosaprepitant (EMEND) 150 mg, palonosetron (ALOXI) 0.25 mg, Dexamethasone (DECADRON) 12 mg. All of these 3 are to help with nausea and vomiting that can be caused by the chemo. This is to get ahead of the nausea rather than to wait for it to happen. I guess that’s a good thing. I don’t wanna be sick. I hate being sick to my stomach 🤢 These will be given to me prior to chemo.
Doxorubicin (ADRIAMYCIN) injection 101.4 mg + Cyclophosphamide (CYTOXAN) 1,015 mg in sodium chloride.
This chemo combination is a very intense and aggressive one. 2 chemo drugs together. I will be receiving this one for 4 cycles. Once every other week with a week in between to recoupe. I start this one tomorrow 😧 yikes!! It all sounds horrifying but that second drug just sounds creepy, Cytoxan. It all sounds toxic to me. The day after each session of the A/C I will need to come in and get a shot of Neulasta. What that is is a booster shot for my white blood cells so they don’t go down too low. This could put me at a very high risk for infection. It was recommended to start taking Claritin the day of the Neulasta injection. This is to help with bone pain caused by the injection and should be taken the day of and the next 7 days. hmmmm, who would’ve thought that Claritin would help with bone pain?
After the 4 cycles of A/C are complete then I start taking the next one:
Paclitaxel (TAXOL) 131.2 mg
Supposedly, this is a much lighter chemo and I’ll start this one on May 11 and it will be given to me weekly for the next 12 weeks. I have a long road ahead of me. This will take me clear into summer and there is still possibly surgery and radiation. Yup it’s safe to say my year will be long. I guess I better not make any plans. But my goal is to get to July 27th. If all goes well this day will be my last chemo infusion. I can do it. I know I can get there. July 27th, you are marked on my calendar. I will see you soon. I’m sent on my way with tons of chemo information and off to do lab work. I will need to do lab work before EVERY chemo infusion to make sure my cell count is not too low. If it ever is, chemo will be halted until my cell count is up. I don’t want this to happen, I want to stay on schedule and get to 7/27.
After chemo drugs:
Dexamethasone (DECADRON) in pill form. I will need to take this for the next 3 days after chemo in the morning and at night to keep nausea at bay. And I’m also given a prescription of Prochlorperazine (Compazine) this is a just in case med for nausea as well. Geez, all these nausea medications, I hope I’m not spilling my guts out for the next 5 months, that would be horrible!!!! I can only hope for the best and continue to stay positive. It is all very intimidating though. I do my lab work and we’re headed home. When MaryBeth drops me off, I tell her. . . . . .
That first and second week left me mentally, emotionally and physically drained! I had no idea I had set foot onto an evil roller coaster that was gonna take me up to highs then swoosh back down to lows and whip me around like a rag doll. And just not let up or let me off. Appointment after appointment kept flooding in. I was so overwhelmed with it all it’s amazing I didn’t lose my shit or have a nervous breakdown. I was poked and prodded and felt up and run through machines and more ultrasounds and it just didn’t stop. It was ruthless. The rest of February was nothing but doctors and tests and more information. If I thought February was rough, it’s nothing compared to what was looming over the horizon. 😞
Feb. 23 –
I had to do an MRI, my first one ever! They want to make sure that none of those little suckers have gotten loose and swam to my lymph nodes. We have lymph nodes in our armpits and around our neck and if any have gotten loose they would go to our lymph nodes in the armpits first because those nodes feed off of the breast. And if they did, I would need surgery to remove those nodes. 😦 They have to hook me up to an IV so they can inject contrast to see the images better. The tech can’t find my veins. I have very sneaky veins, they like to play hide and seek. She tried all of the possible areas. By the time she found one, in my least favorite spot even, I had bandages on all areas! I looked like I had been making tracks. That machine was huge and NOISY, geez, good thing they gave me some headphones to wear and listen to music during the procedure. It wasn’t so bad but it did take FOREVER! and it was cold in there. We’re all done! I can change and go home. I would have results soon. I hope it comes back good.
Feb. 28 – results.
I get the call with my results. The MRI showed nothing in my lymph nodes. They are clear!! Thank the Lord, but. . . . they see a shaded area in my left breast that needs further evaluation. Man alive!!! Is this ever gonna end? With every bit of good news I get, it seems like I get double the bad news 😟 I can’t take this anymore. They have me scheduled quickly for ANOTHER ultrasound and ANOTHER MRI guided biopsy at the end of the week. *SIGH*
Mar. 3 –
Ultrasound and biopsy day. Well, here I am yet again at the butt ass crack of dawn to do more testing at the imaging center. I really hope nothing is wrong with my left side. I don’t need extra things to worry about. It’s already super stressful and exhausting on all levels. I have one of my ‘work sisters’ with me, MaryBeth, she is another one of my cancer crusaders. She too has been with me since I told her my news, they no longer let me do anything alone 💚 All of my ‘work sisters’ have been fabulous!! See, I have no bio sisters, they are my sisters, I have 3. So she is here with me for support and company. After the last time I was alone, I got the shock of my life and it was here, at this place. So, now I ask someone to come with me. My work sisters are so different outside of work. They’re awesome!!! I just love them!
Time to get ready for the ultrasound, that will be the first test. Nope, they can’t see anything from the ultrasound, the area in question is way too small. Thank God for that. . .I guess? This will need the high tech machinery of the MRI. I’m sent to do that. Now I’m back with the noisy machine. I meet the doctor who will perform this biopsy. He is soooo cool. LOVE THIS DOCTOR. He wants to make me as comfortable and happy and relaxed as he possibly can. They must of told him of my experience with the first biopsy, remember 1. . .2. . .3. . .POP? Yeah, I’m still traumatized by that. Anyway, he was super good with me, gave me lots of numbing medicine to be comfortable as ever. The only thing I felt was pressure, no pain at all. He was very attentive to how I was feeling. He took 7 samples and that wasn’t bad at all. And he did make me feel comfortable. We’re all done. I need to do a mammy, not a regular one but a simple one with not so much squeezing. They need an image of the titanium chip he inserted into the breast at the area, to let future technicians know that the area has already been addressed. I forgot to mention that my right breast also has a titanium chip from my first biopsy. This is a mandatory procedure when we go in for biopsies, a titanium chip is inserted to the area. You don’t feel them at all, but will always be there, they are never removed. They stay with you for a lifetime. And no, they don’t set off medal detectors. The doc comes out and explains I should have results in a few days. He was super awesome. MaryBeth even says, “if I ever have to come in for a biopsy, I want HIM to do mine!!” Haha, he was great. Ultrasound and MRI done!! I can go home.
Mar. 6 – Echocardiogram.
I need to do an echo to make sure my heart is healthy enough to endure the heavy chemo they have planned for me. I didn’t ask anyone to come with me to this cuz it’s just a heart scan, but geez, once I got here I was overcome with anxiety. Like bad. My heart just about beat right out of my chest. I almost started crying, so here I am texting my friends to try and calm me down.
When I first found out my news, I reached out to Tammy, she is the one who also went through what I’m going through right now. Every little thing I go through, I ask her about and what it was like. I’m grateful I have her to walk me through things. So naturally, I’m talking to her right now, trying to bring my anxiety level down.
We do the echo, we’re done in like a 1/2 hour. I leave. Why was I in such a panic? I think everything that is happening so fast, is getting to me. It just doesn’t slow down. I’m trying to stay strong and positive and I think it’s wearing me down. Plus, I’m still working through all of this, I’m not missing a beat. And its wearing on me bad.
Mar. 7 – Results of 2nd Biopsy of left side
I get my results from the MRI guided biopsy. Great news!!! Everything is clear for that breast and so are my lymph nodes! Wow, finally some reassuring news. Do you know how bad I’ve been needing good news?! I really needed this! 🙇
Mar. 8 –
Time to get down to business. The hospital already has me scheduled for my chest port. I will need a chest port inserted into my upper chest so that when I start receiving chemo, this is where it would be rather than through a vein on my arm. Through here they will access my central vein. I’m scheduled for the 13th of March. eek. That roller coaster is taking me through cork screws!!
Later that evening, I get a phone call from Trish, she is the one who will be doing all of my scheduling at the cancer center. The doctor would like to start chemo as soon as my chest port is in 😧 I had a feeling this was gonna happen. She lets me choose a day of the week that will work for me. I do Thursdays. I’m off on Fridays and Saturdays, so this will give me a few days to recoupe. My first treatment will be on the 16th 😥 Once again my evil roller coaster is picking up speed and whipping me around. She gives me the weeks’ schedule of appointments. 3/13 – chest port procedure, 3/15 – chemo class, 3/16 – 1st round of chemo & 3/17 – Neulasta- booster shot. Here we go, it’s all happening soo fast 😟. Chest port, treatment, etc. I don’t want chemo but I have to. Chemo just scares me! How is all of this gonna affect my son? I’m gonna lose my hair. I may be sick a lot and in bed and tired all the time. I just break down and cry. Honestly, the reality of it all is just too much. I can’t take it. I cry my eyeballs out. Chemo will go on through summer and the only thing I can think about, is how all of this will affect my son.
I text my oldest brother, Jake, and tell him that chemo will start soon. We both figured this was gonna happen once my port was in. I’m soo scared. But once all of that happens it’s time to get down to business.
My treatment schedule:
4 cycles of intense chemo ( once every other week ) then 12 weeks of a different chemo ( once every week )
I give Jake my treatment schedule and just *sigh* heavy. He tells me, “its just a trip down the beach with two sets of footprints” Referencing, ‘Footprints in the Sand’. I LOVED that he told me this and it did make me cry more, but I needed to be reminded of that. In response, I said, “Yes, I know and when I only see 1 set, I’ll know that I was carried.” It’s not the kind of beach walk I was hoping to take but at least I won’t be alone. My God is ALWAYS with me!!
Mar. 12 – Day before chest port
Lab work ✔ No aspirin 5 days prior to procedure ✔ No ibuprofen 5 days prior to procedure ✔ No blood thinners prior to exam ✔ Need to have a driver with you ✔ Nothing to eat or drink after midnight ✔ Check in time is 10:30, procedure at 11:00 ✔ I’m gonna starve!!! 😕
Mar. 13 – Chest port procedure day
It’s Monday, it’s procedure day. I can’t have anything to eat or drink and my procedure isn’t until 11 and will last a couple of hours. I have to go downtown, I hate downtown. Good think Jake is with me. I needed someone to be with me and drive cuz they’re gonna put me under for the procedure and I’ll probably be loopy. I’m such a light weight when it comes to anesthesia.
It’s amazing how calm I am today. I have no nerves at all. The doctor comes in and explains the procedure to me and shows me how and what will be going into my body and where it will be set. After a few days I shouldn’t feel it at all.
They’re running behind, almost 12:30, I finally get rolled back. I get all hooked up, the anesthesiologist is funny, she’s great! She asked me if she could get me anything and sarcastically I said, “like a hamburger!” She couldn’t bring me any food but she did tell me she would give me a ‘kick ass’ cocktail that would put me in a twilight. And in twilight I was. I remember seeing the clock at 12:30 now it says 2:30. Where did 2 hours just go? It felt like 5 minutes. They’re unhooking me and rolling me back out. Everything went smoothly.
They find my brother and we go to recovery. I’m exhausted! And loopy and starving!! They bring me apple juice and applesauce, mmmm. Finally, a little something to eat and drink. I swallow it up. A few minutes later, uh oh, mad heartburn is coming on. Oh crap, I wasn’t able to take my acid reflux meds cuz I couldn’t take anything prior to the procedure and having apple juice and applesauce was NO BUENO!!
4:30pm, we finally get to leave!! On the way home “I need to throw up, I feel like shit!!” My head is pounding! I was so dehydrated from not being able to have anything to drink from the night before causing my pounding headache, and my acid reflux was in full force. I have a headache from hell. The drive home seemed like an eternity not to mention it was rush hour from downtown. I had to spill my guts, luckily we made it home. I didn’t feel bad from the surgery itself but I did feel awful from everything else. It was a horrible combination of dehydration and mad acid reflux.
After a little bit of rest, some food, my acid reflux meds and some rehydration. I actually felt like my old self again. Back to normal. Just a bit sore and of course, tired from the day.
Sorry, I know this post was super long but I hope you stayed with me til the end. It’s all part of my blind journey.
We’re gonna take a break from my story and talk about early detection and self exams.
Ladies and also men, yes men, always check yourselves!! Men too can get breast cancer, as crazy as it sounds, it can happen. So, please check yourselves often. When we check ourselves we can find something long before a doctor ever will. Admit it, how often do some of us even go to a doctor? Some of us don’t go to a doctor until we really feel like crap or feel like we’re dying. Always remember that when it comes to cancer, this could be too late.
Plain and simple, cancer doesn’t give a crap. Cancer doesn’t care what you have going on in your life, it doesn’t care if you’re a brother or a sister or if you’re a parent. It doesn’t care if you just got married or had a baby. And it certainly doesn’t care how old you are! You could be a teenager (although rare), a twenty-something, fifty-something or an elderly enjoying retirement and all the years they put in to get that. It doesn’t care!!! Cancer doesn’t care if you’re struggling in life or if you’re thriving. And it doesn’t care what other health issues you may be dealing with. Cancer is ruthless and remember it doesn’t care.
Cancer is silent. A very silent devil. Cancer is not painful, not usually, until it reaches a painful stage and we start to feel ill. By this time, it could be too late. Early detection is key. Don’t wait! If something doesn’t feel right, have it checked right away!!
Learn how to check your body and do self breast exams on a regular basis. Like I said before, early detection is key. Know your lemons. Know what your breasts are supposed to feel like. If they look different, feel different, have a different color to them or you have discharge, have it checked out. It is always better to be safe than sorry. That’s how I found my lump, by doing a self breast exam. And because of this I scheduled a check up 2 months earlier than my normal visit. Thank God for that for I caught it and took action early. So can you. If something doesn’t feel or look right, have it checked. You know you’re body, if it shouldn’t be there then it shouldn’t. This doesn’t just apply to breasts’. Check all your lymph node areas for tenderness or lumps. If you feel unusual fatigue or dull pain, have it checked. Below is an image and a link on KNOW YOUR LEMONS – the 12 signs of breast cancer. Please take a look at it. It is very helpful.
http://www.bbc.com/news/health-38609625 – The 12 signs of breast cancer.
Try to do them often. Whether in the shower or lying down, get into the habit of always checking your breasts. This could save your life.