One week into the rest of my life

Hi everyone! I thought I would give an update as to how this LAST round of chemo went. I am thrilled to tell you that I got through it pretty well! As you know I was really worried because Round 5 was hellish, very painful, and mentally challenging. And knowing chemo is cumulative, I was very worried. But... all is well. Tuesday marks a week post-chemo and I'm feeling very tired, but good.

I was down on the couch Wednesday afternoon, Thursday and Friday, but they were more of a "take some Tylenol, snuggle in a blanket with the remote, and watch stupid TV and doze" types of days. No major pains, no fevers, few chills, and no descending mental darkness. For this I am grateful.

I've got the typical post chemo symptoms - ferret in the stomach, numb toes, dead taste buds, sore mouth, hot flashes... the next few days I know I will see GI issues and of course the fatigue and muscle aches. Some of my fingernails are separating a bit from the bed but it's nothing a little Formaldehyde-free nail polish from Whole Foods can't cure :-) But all those are tolerable. Because I know they will slowly subside and I don't have to put myself through it anymore.

I got a delicious night sleep Friday night, first time in about 3 months. I slept three hours, got up to pee, and slept another FIVE hours. Like, straight, no sweating or chilling, or bone aches, or anything. Just dreams. I felt so good on Saturday. I managed to shower and dress and take a trip to the grocery store (don't worry, with my little helper!) We came home and I napped a bit and then went cell phone shopping and out to Portillo's to dinner. It felt so good to get out of the house for a few hours like a normal person! I missed a family party on Saturday-I'm not sure I could have handled hours in a car and party food. But my family will forgive me, I know.

And it's only going to get better from here on out, isn't it?

Here we go again...

Tuesday (tomorrow) is my LAST chemotherapy treatment. I have a lot of emotions running through my head. I thought this day would never come. I'm excited to get this over with. I'm dreading feeling sick for the next weeks and the fatigue that comes with the healing of the cells that were killed. I'm excited to get some semblance of a life back. To feel good again. To go for walks and bike rides without hurting. I want to climb mountains this summer. Or at least big hills.

I do have to remind myself that I'm not quite done though. (Is a cancer survivor ever done?) The nurses will sing for me tomorrow. But I will see them Wednesday for my last Neulesta shot. And next Tuesday for another less invasive treatment. And the next Tuesday, and the next. Then every three weeks for this Herceptin treatment, until next January. So I will still have to go to the Cancer Center and get hooked up and all that. But this Herceptin treatment doesn't make me sick like the chemo. Doesn't make my bones and muscles hurt and doesn't kill the fast growing cells in my body. It'll be interesting to see what side effects it does have, by itself, without the nasty chemo. Good news is, I had a MUGA heart scan last Friday and my heart is still as healthy as it was when we started.

Best of all... is that my hair will grow back! I have a confession... I HATE being bald. I am sick and tired of wearing hats. Or scarves or head coverings. And it's not because of how I look bald. When I have makeup on (like eyebrows!) and earrings, I think I look okay. But for some reason I have not ventured in public as a bald chick. My head is COLD all the time. Even hanging around the house, it's cold. Except of course when it's HOT. It's one or the other. Never a comfortable in-between. I wear a hat or scarf. My head gets hot. I take the hat or scarf off. My head gets cold. My temperature regulator is broken. (I won't even talk about night time!)

If I could regulate my temperature and not have this issue, it wouldn't be bad at all. There are some definite advantages of being hairless: 

1. I can get ready in the morning in about 15 minutes and that includes showering and putting on makeup. 
2. Not having to blow dry my hair and making my scalp and dry and itchy. (No dry flaky scalp now!)
3. No one can blame me for clogging up the shower drain with hair! 
4. Save money on shampoo and conditioner (and frizz-ease, and other styling products)
5. It's impossible to have a bad hair day! 
6. I haven't had to shave my armpits in months! 
7. Or my legs! 
8. Or... well, we won't even go there!

That's all I can think of for now... if anyone has any other advantages, leave a comment.

I need to take my steroids before I turn out the light. I hate taking them. They wire my brain and cause insomnia. I can lay here with my eyes closed but my mind will be ticking and tomorrow I'll be tired and cranky. They will cause flushing and a red rash on my cheeks (like a sunburn that will flake and peel over the week.) They will cause water retention; a puffy moon face. They make me want to eat but the chemo will make me want to puke. But I'm a good girl. I take them because they're supposed to cut down on any allergic reactions to the chemo and help combat nausea and vomiting.

But this is the last time, right? I can do this.

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.

Lisa-4, Cancer-0

Soooo. Round 4 is over. Tomorrow I go in for round 5. I dread it. Instead of enjoying the past few "feeling great" days, I felt anxiety about the next chemo cycle. I'm just tired and don't want to deal with it anymore. I don't have time to feel sick for a week. Or longer. I have too many things to do around here. It's spring! I want to go out and enjoy it. I want to work in the garden. Go for walks. Gah! I just want this whole chemo thing to be over. I want my hair back! Yes, I am even willing to start shaving armpits and legs again, just give me my head hair! 

Okay, I'm done whining. In three weeks and one day I will be done with chemo. I can do this. 

Change of subject... a few weeks ago my nephew Tyler had his head shaved for a St. Baldrick's fundraiser for Childhood cancer. He dedicated his shave to me and a family friend who both have/had breast cancer; his step-grandpa and his second cousin who both passed on from lung cancer, and his friend Nate who is in the middle of a really tough battle with an aggressive cancer. (I'm thinking an 18 year old shouldn't even know that many people with cancer!) We had a family party for his and Celia's birthday last weekend and I got my picture taken with him. I call it "Two Baldies." Although I was slightly jealous that in two weeks he had a nice layer of fuzz already! I think he looks handsome with Very Short Hair.

Oh yeah, I'm the one on the left, ha ha. This is the ONLY baldy picture of me you'll see. Because a) I don't like getting my picture taken; and b) I don't like being bald; and c) this is the ONLY picture that I don't mind too much. I want to thank my sister for taking it. 

I also want to thank my sister for being there for me throughout all these chemo sessions. At first I thought that I might want to be alone. After the first session I changed my mind. She makes it tolerable and dare I say... fun? Oh yeah, we manage to laugh. And talk. Yell at the TV. We eat lunch together. Sometimes we just sit in silence and work on schoolwork or artwork or work-work. But I never feel alone. Sometimes I even manage to forget that I'm hooked up to an IV being fed poisons. Well, except for that time I needed to go to the bathroom and she unplugged something (that obviously wasn't the IV) and a couple of nurses came running into the room in a near panic. I guess she unplugged the emergency button and the nurses thought I was dying or something. Oh yeah, we laugh about it now. I think we laughed about it then too. Let's not do it again though, 'kay Moni? LOL.

Wish me luck tomorrow... may the ferrets find another home (that's not in my stomach) and may the drugs not turn me into a blimp.

I swallowed a Ferret...

And other tales of Chemotherapy. 

My husband said I didn't cook it enough. I can feel it running around in circles in my stomach. Every once in awhile it delves deeper into my intestines, but mainly it's my stomach. It's the weirdest feeling. Ooh. It kinda feels like an alien baby in there, kicking around. Hmm. 

So the side effect are definitely cumulative. After the first cycle I said to myself "oh this isn't too bad. I can deal with this!" Now I want to cry when I think of having to do this two more times. The Wednesday after Chemo used to be a pretty good day. I'd get my Neulesta shot and then run errands because I knew I'd be out the next few days. I started feeling crappy on Wednesday already. I was couch bound on Thursday, Friday and most of Saturday. Dragging around on Sunday. Dang it, I have to go back to that place on Tuesday again! 

New side effects, besides the Ferret in my stomach... my fingernails hurt! They have weird little white moons and the rest are orange-y colored. (Wait, let me think... no, it's not paint!) They're not horrible looking, but they hurt when the nail is pressed or if I grip a pencil or paintbrush. 

My toes and bottom of my feet are very slightly numb. Sometimes the pads of my fingers too. Every three weeks at my Oncologist's appointment I am asked if I have any numbness and/or tingling in my fingers and feet and I say no. I was really hoping to get away with no neuropathy but I don't think I'll be that lucky. 

The hot flashes/night sweats are making me crazy! I call my nights "Shake and Bake". I'll overheat, shift over to the cool satin pillow to chill my head, then 10 minutes later I'll start shaking with chills. The first three days after chemo this was going on every 45 minutes all night long. Last night I think I slept 2 hours straight between episodes. 

And the fact that it's been in the high 70's to mid 80's in the middle of March, Does. Not. Help. I am constantly overheating, even during the day. I purged my closet of winter today. My hats all went back into the hat bin. (My personal Mad Hatter is crocheting me a cotton beanie!) Even wearing scarves is too hot. Around the house, I go without.  But I still have a problem going out in public with nothing on my head... yes, my brave attempt was at 10:30 at night to let the dog pee. In the dark. With no one around.

I don't know why I can't do it. It's not like I think someone will laugh at me. Who laughs at cancer patients? And if they do, I've got my lines ready. I'm not scared they will stare in repulsion. Or think I'm ugly. I really don't know why I can't do it. Maybe I don't want to be pitied? I don't look at bald women or cancer patients with pity. I see strength through adversity. I really can't figure out what is stopping me from going public. 

I'm guessing I will just get to the point where I'm fed up with being too hot and just "take it all off". Then it will be done with and over and I can get on with my life. 

Speaking of... my head is filled with peach fuzz! From far away it looks bald but up close I have a thin halo of fuzz. It makes me second guess my decision to shave it! No, seriously, it was falling out back then, but now it's growing back in places. Some of the hairs are about 1/4" long already (and WHITE I might add.) Very, very sparse; most of my head feels like sandpaper. But what's up with that? Even after cycle #3 it was growing in instead of the stubble falling out. The good thing is that the stubble/roughness helps hold my thinner scarves on my head. The bad thing is that it looks really... weird. Part of me wants to shave it all off again so it's nice and smooth. The other part of me says "what, are you crazy? It's growing!"

Well, this is long enough. I'm just dreading going to sleep. According to my "side effects cheat sheet" I should start getting more energy (check), My GI system should be royally screwed up by now (check), my appetite should start coming back (still waiting), my mouth should feel like I burnt all my taste buds off (check).

And next time I'll remember to cook the Ferret before swallowing it!

Fasten your seat belts...

Well, I suppose it's just me that has to fasten the seatbelt... I was on top of the roller coaster, the peak, on Monday. Tuesday I started the steep slope down. WHEEEE! As of today I am officially 4/6 done with my TCH chemo treatments. (Or, as my daughter learning fractions would say, 2/3 done!) It feels good to be on the downswing, working on the second half. I have officially charted the day by day side effects so I know, in general, what to expect. 

The nurses today were wonderful. I explained that it was my daughter's birthday so I wanted to be home by 3:00 so she wouldn't have to be alone when she got home. They hustled and bustled and as soon as that machine beeped at being done with one bag of fluids, they were in there changing things over. I think we were done by 2:30. I had time to stop at the store to pick up some chicken so I could make my daughter's favorite meal for her birthday. And I made enough for leftovers tomorrow night because I know that by tomorrow night I won't feel like cooking :-) Who's got their thinking cap on now? huh? 

I'm feeling okay so far. It always hits me the next day. I already hiccuped a few times and I have that feeling where it's a strain to take a deep full breath. I have to remind myself to take deep breaths often to help clean out my system. And drink. And drink. And drink.

The past few weeks my eyes have been very watery. The slightest dry air or the slightest breeze will make them tear up. So much for eye makeup. I've given up on mascara altogether. It would last about 4 minutes before it's dabbed off. Same with eye liner. I guess the tearing irritated eyes make the rims of my eyes red like I have a lip liner on my eyes instead. Not exactly the look I'm going for! 

And neither is the loss of my cheekbones. I'm noticing a moon face staring back at me in the mirror. Pumped full of steroids, my cheeks have filled out into that distinct "I'm taking too many drugs" puffiness that sick people have. Sigh. So much for "Look Good, Feel Better."

Maybe this gorgeous spring weather we're having will help the "feel better" part. Until I start sneezing with allergies of course. Oh goody. More drugs to take. 

Sorry I'm not being very positive. To be honest with you, I'm tired of taking so many drugs. I never even liked to take Tylenol before this all this happened. And it seems every week I add a few drugs to the disgustingly long list. This week was Flonase nose spray to help stuffiness and prescription Vitamin D because my levels are way too low. I'm going to have to start of allergy meds SOON too now! 

I think I need sleep and a few days off to just rest and recuperate. Too bad the steroids wire my brain and cause insomnia! ACK.

I hate roller coasters...

Wow, it's been awhile since I've updated! All I can say is that the past two weeks have been quite a roller coaster ride. Starting at the bottom with Chemo Cycle 3. It kicked my butt this time. By far the worst yet, including #2 when I had to have surgery two days post-infusion. I was fine on Wednesday during the day and the fatigue hit that night. It normally keeps me down on Thursday and I'm up and around again on Friday. This time I was down for the count... Thursday, Friday, Saturday... I finally felt better on Sunday.

But it's not like I was in bed for three or four days. I still get up. (Although I don't always shower or put something other than sweatpants on!) I still manage to get the minimum amount of work done. I don't go anywhere, but I still function. I just feel like a zombie most of the day. And I sit in the comfy chair a lot. Or doze on the couch while watching stupid daytime TV. And my dog follows my every footstep. I feel yucky in general. I don't want to eat anything. Or think about food. Or smell food. I have to force myself to drink my 7-8 glasses of liquids a day.

Then when I started feeling better on Sunday, my daughter got sick with a very high fever. We couldn't control it, even with Tylenol. She vomited several times when we gave her some meds. I slept on the couch to keep an eye on her. Same thing on Monday. Her fever wavered between 103 and 104.5. When it spiked at 105.4 we manually cooled her down with cool packs and water soaked washcloths and took her to Urgent Care. I had to wear a mask the whole time because of the germs floating around. After urine tests and blood tests and a lot of waiting around, the Dr. came in and said they had no idea what was wrong but her white blood cell count was very high and we had to go to the ER NOW. So off we went for more tests. She got her first IV, CT scan and chest x-ray. No pneumonia, no appendicitis, but there was inflammation on her kidneys so they diagnosed a kidney infection and sent us home with a scipt for antibiotics.

Have you even been to a 24 hour Walgreens at 1:00 in the morning? Weird. The pharmacist was really really cranky. She obviously did not want to work the night shift. I tried to be extra nice but it didn't help. There was a lady there the whole time I was there, shopping for hallmark cards.

A the follow up appointment last Friday the Dr. explained that there are some areas of the kidney that show as abnormal so we have to get an ultrasound in a few weeks and then meet with a pediatric kidney specialist to find out what's going on. If the infection caused the abnormality or if the abnormality caused the infection. Dr. did say it's nothing major, her kidney function tests came back normal.

Anyway, Little C missed an entire week of school. My week was spent taking care of her and worrying about her. And worrying that I may have picked up something in the waiting rooms. But I seem to be fine so far... my counts are good, I was even allowed to go to the dentist Saturday for a cleaning and checkup, woohooo! 

Did I say woohoo about the dentist? Yikes. Maybe I am sick. In the head!