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 😭
Oh how I want this to be over. . . . but it is only the beginning