The Truth.

This is not a post to invoke sympathy or pity. Positive thoughts, prayers and comments are always appreciated but I'm not writing this for that purpose. I just want, no, need to tell it like it is.

I'm having a hard time writing this... I don't want to be negative, but my goodness, how can I not be if I want to tell the truth? I don't want to sound like I'm whining and I don't want to appear weak. I know others who are going through tougher regimens. But I would be doing myself an injustice if I skipped this part and sugar coated it into the background. My goal is not to scare anyone, but to be truthful.

The Truth is... chemo sucks. No surprise there, right?

This round of chemo, round 5 out of 6, really kicked my ass this time. I knew the side effects were cumulative, but still... Last Tuesday was a normal day of infusion, but the night time began the nightmare. Severe lack of sleep despite sleep aids. Wednesday I completed some work and went to get my Neulesta shot but was so out of it. I told myself I'd take Thursday off. I packed a few orders and parked on the couch watching bad daytime TV and Lifetime Movies. My bones began to ache. My heart started fluttering. My stomach felt like it had a brick in it. My muscles ached and started spasming. Restless legs and body. My fingers and toes were numb but at the same time sharp little pinpricks would stab them. My head was dizzy and my balance was off. That lasted all day and into the night and I thought I might just die on Friday and Saturday. My brain didn't really care. I think I left the couch about 4 times to pee. I'm grateful MrC and LilC were home from school because I was scared to be alone. (They probably don't know this.) I couldn't function. I couldn't get up. I drifted in and out sleep all day, trying to get comfortable with my aching bones and muscles. Hat on, hat off. Hat on, hat off. Etc. I ran a slight fever those two days. Not enough to call the doctor, it was only the mid 99's and I was told to call when it's 100.5. But it still made me feel like crap.

MrC took care of everything, setting up play dates for LilC, driving her, making dinner, going grocery shopping, packing orders, etc. I just lay there and didn't care. That's the part that scared me the most. My brain wasn't functioning like normal. I had no energy to even think. I just wanted to cry. And slip into an oblivion where everything goes away...

Today is Sunday. I feel a bit better today. Walking across the house exhausts me but I'm awake and vertical. I even sat at my desk for a few hours and worked on some art work. I read and answered some emails. My stomach feels like the Ferrets are playing toss with bricks, but I was able to eat a sweet potato for lunch and a chicken breast and rice for dinner. And some ice cream to cool my mouth. My mouth feels like my taste buds are burned off. This I expected. But I didn't expect my mouth and the sink to fill with blood when I brushed my teeth with my Winnie-the-Pooh toddler toothbrush! I can feel more mouth sores forming as I write...

I'm scared.

I'm scared about what the next cycle will be like. Every cycle has been worse than the one before. Exponentially worse, not just a "little worse." I am 5 days past my infusion and I am already feeling anxiety about the next one. I don't want to do it. I find it hard to breathe when I think about it. I have to keep telling myself that it's my last one. That's the ONLY thing that calms me down a little bit. But then I think, what if it kills me? Wouldn't that suck?

I just want this to be over. I know that tomorrow I will feel a little better. (My rational brain is coming back.) And the next day will be better. And so on. In a week I'll start forgetting how bad I actually felt. (Isn't the brain amazing?) In two weeks I'll feel good, normal even. And I will do what I can to recover my strength and repair my cells so I'm in the best shape I can be for next time. And soon it will all be over and I can start living a normal life again. Although that's a misnomer because I have a feeling things will never be normal again.

But for now I'll deal with the guilt of "cancelling Easter" for LilC... not a chocolate bunny nor a colorful Easter egg was to be found here :-( I'm so sorry.

Blurry Brain

Cycle 1 Day 2.
I thought I had a few days before the side effects hit. I hope I'm not in for a big surprise... woke up today feeling a bit blurry in the brain. Not nauseous, not dizzy, just a little light in the brain. Hard to explain. I've been trying to pay close attention to my body but sometimes things are hard to describe. Like my tongue. It feels weird. Like I drank a hot beverage but didn't quite burn it. I also had a face flushing episode where my face turned bright red and got hot. It went away after about 20 minutes. I pretty much lost my appetite as well. It's much harder than I thought to force myself to eat. I had a Trader Joe's Slice of french toast with agave nectar syrup this morning. Around 1:30 I forced a mini bagel with peanut butter down the hatch. A few hours later I had a greek yogurt. At 7:00 I had a bowl of Wonton soup with vegetables from Whole Foods. Not a whole lot of food... but ick. Everything just turns me off. I didn't even manage my 8 cups of water... I counted the soup as one cup and still only came to 7. The weird thing is... I had the hiccups all day! Every time I ate or drank something I got the hiccups and it felt like it was gonna come right up again. And heartburn... much worse than normal. Hello Tums. I think I need to go back to plain water, I tried flavoring my trough with Vitamin Zero water, I think even the Stevia was too much for my stomach to handle. Back to water...

And then this evening my neighbor/friend Amy came over to see how I was doing and dropped off an uber-cool stainless steel water bottle... to remind me to drink my water and look cool doing it. It was very sweet, and perfect timing. She is an inspiration, being a long term survivor of Hodgkins Lymphoma. Thanks Amy!

I did get my Neulesta shot today, right in the belly fat. IF I get side effects they will hit me tomorrow with bone pain and flu-like symptoms. Oh Joy. I have an appointment at the American Cancer Society wig boutique tomorrow and we're expecting our first snow of the season :-( But the worst part of today? I LOST my Norco prescription! I put it in a Very Safe Place yesterday. I remember folding up the letter size sheet so it was the size of the script. I thought I stuck it in my calendar, which I carry with me... or my notebook/journal... it's NOWHERE to be found. I don't even remember which doctor prescribed it. Can I blame it on chemo brain already??

Let the games begin

 
I found this cool pendant in an etsy shop. Click to see.

Cycle 1, Day 1

This means each "cycle" consists of a start of all three drugs on the 1st day (for me Jan 10th), and just one drug (H) on the 8th day (Jan 17th) and one drug (H) again on the 15th day (Jan 24th). Then Cycle 2 (TCH) starts again after 21 days of the start, also known as Day 22 (Jan 31st). Lather, Rinse, Repeat. Whew. I just have to remember to look at my calendar, remember to go on Tuesdays and follow directions. It's seriously like learning a new language. 

Anyway, as other people have told me, once the first time is over, it gets MUCH easier. Now I know where to go and what to expect. I think I did pretty good. No tears at least. Soo much information to retain though. Mostly about controlling side effects and when reactions and side effects are expected to reoccur. The head nurse said that it could be as long as 3 weeks before my hair starts seriously falling out, probably completely by 4 weeks. JUST IN TIME for my birthday on February 10th! Up until then it just starts thinning out. I swear my scalp feels tighter already but it could be just because I'm thinking about it. (Psychological, you know like when you see head lice on TV and your scalp starts crawling in response? LOL) 

I pretty much sat in a lounge chair for 8 hours straight except for bathroom breaks. They were able to use the port after poking and prodding my tender swollen skin. I sat for 90 minutes while the Herceptin dripped in, then had to wait an hour with nothing but saline to gauge any reactions to it. I was fine, no reactions whatsover. Then they started the Taxotere for 60 minutes. No reactions during infusion. Finished off with Carboplatin for another 60 minutes. Again, no reactions. It was pretty boring and tiring because I got about 3.5 hours of sleep the night before. Apparently steroids "wire the brain" which was exactly what happened last night. I actually found a comfortable sleep position but my mind was wide awake. Probably some nerves involved too... 

I feel fine tonight. Just tired. I'm glad my little sister was there to keep my company and keep my mind off of what was happening.  It was probably pretty boring for her too, but the next "big day" infusions should be 4-5 hours instead of 8, which will help. I feel guilty taking up so much of her time, but I'm not going to turn her down if she offers to keep me company! 

It's strange not knowing when "side effects" will start... I have to be very conscious of my body and mind and write everything down. The nurses suggested keeping a food diary as well. I'll start that tomorrow since it will look pretty bad when I say I had Oberweis peanut butter chocolate ice cream for dinner! Heck, I think I deserved it! I chased it down a few hours later with a protein shake/drink, so there. 

My port site is pretty sore, especially after the nurse took all the sticky Tegaderm tape off. That's that clear tape they put over IV sites and over small incisions. My body is NOT liking adhesives right now. The tape left raw blisters along the edge line and very angry red irritated skin underneath. It also happened last week when the SAVI device was removed from my right breast,  the steri-strips caused raw oozing blisters that are finally healed. The blisters hurt more than the actual incisions. The good news is that I DON'T have to wait 5-7 days to take a shower, I can shower on Thursday already, whooopeee!


Tomorrow is a Neulasta shot to help my white blood cells rebuild themselves. It's not a shot in the arse, but rather subcutaneous fat in the belly. I got a lot of that to offer!