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! 

Exiting the Comfort Zone

As you might know, I'm not thrilled at being bald. Nothing to do with looks... my husband just affectionately called me "punk" lol. No, I don't like the FEELING of being bald. The cool air flowing over my head makes me cold. The wig is scratchy. Constantly wearing hats makes me hot. The scarves are my best bet right now, but it's still hard to regulate temperature. 

But this story IS about looks. I wanted to tell you about when I really stepped out of my comfort zone and zapped that criticizing little devil on my shoulder. The devil that says... "you can't let anyone see your bald head, it's funny looking, they'll laugh."So here's the story: 

Last week Monday I went to a program that's put on by the American Cancer Society called "Look Good, Feel Better." People kept telling me about it, nurses kept asking me if I'd gone. I tried to go to the January one but I ended up with my 2nd port surgery that night. So I signed up for February. It was the most crowded the folks running it had ever seen. Full house... about 25 women, about 3/4 with some type of cancer, some brought support peeps. Some people were just diagnosed, some people were just starting chemo,  one was ready for hospice. Amazing ladies with amazing stories. All sorts of cancers, from breast to lung to ovary to abdominal... it was very empowering to hear the stories and be in a room full of so many warriors. 

But I digress. The program teaches you how to take care of your skin during chemo and radiation treatments, how to put on flattering makeup that will make you feel pretty, and how to deal with the hair loss with wigs and scarves. Each participant received a big bag full of makeup that was donated by cosmetic manufacturers, based on skin tone. And not sample sized... everything was full retail sized products. It included eye cream, moisturizers, foundation, , powder, blush, eye shadows and liners, brow liner, mascara, lip stick and gloss and liner, sun block and self tanner. A big thank you goes to Mary Kay, Estee Lauder, Avon, Clinique, and more for their generous donations for this cause. I went naked faced (my first trip outside the comfort zone!) and just wore a scarf on my head. I walked into a room full of already gorgeous women who hadn't lost their hair yet or were wearing their neat wigs and full makeup. 

Okay, back to the program. I learned how to put on make up with an aesthetician's help. The most amazing thing was filling in the eyebrows. I've always hated my unruly eyebrows, but they thinned out a lot and now looked really good filled in with a brow pencil. Very subtle. And eyeliner really popped the eyes. Well, can I say that I looked good? And my table mates concurred. And then... the lady in charge asked me if I would be the model for the scarf tying demonstration. 

Oh. My. Gosh. 

She wanted me to take off my scarf and show my bald head to a room full of people? YIKES! 

I hesitated about 5 seconds and blurted out "sure!" and then thought.... crap. This is TOTALLY out of my comfort zone. But you know what? If there's one thing I've learned from all my art peeps and friends, is that it's GOOD to step out of the zone once in awhile. So I went to the front of the room and sat in a chair facing away from the crowd and whipped the scarf off. The lady took a while to explain what she was doing but finally tied a scarf on in a creative way... and viola! I turned around to model and there are about 20 camera phones pointing at me taking my picture!! (Some of you know how much I HATE getting my picture taken!) Someone joked that I would be in a you tube video (!) Everyone oohed and aahed and said how great I looked and that my makeup looked really good and I was a great model and I started to lift my chin up and stand a little straighter. And it was a totally surreal experience. Because some of you know I HATE being the center of attention, LOL. 

But it was all cool. I stepped waaay out of my comfort zone and I didn't die! No one laughed at my bald head (because they all knew they looked the same under their wigs, or will soon look the same!) And I felt physically pretty, which doesn't happen much lately. (OK I admit, never happened much in my life!) I don't judge beauty by what someone looks like, but once in awhile it is good to FEEL beautiful on the outside too.

Now I need to look up those you tube videos because with all my anxiety about being the model I've forgotten all the cool ways to tie those scarves! 

Hair, Hats and Hormones

I have been feeling great this past week. Everything is returning to normal, minus the extra fatigue that hits me in the evenings. It was my birthday on Friday the 10th of February and I felt good enough to eat some cupcakes and then went out to dinner on the weekend. (First time out to dinner in a looong time.) On my birthday I decided to shave my head clean. It was buzzed before, with about 1/4" of hair all over except for some emerging balding patches. It was hurting to lay on it and I kept getting short pieces of hair everywhere, including my eyes. So off it went. Plus, I wanted to tell people when they asked "did you do anything special for your birthday?" I can answer "Yes, I had cupcakes and shaved my head." LOL.

Believe it or not, a 1/4" of hair still keeps your head somewhat warm! When it was all gone, my head was REALLY cold! It was a really weird sensation to feel the air gliding over my head as I walked around the house. Just sitting around is cold. I have to wear a hat most of the time, or at least a head scarf. I have decided that I DO NOT like being bald because of this. It has nothing to do with beauty or looks. I don't place a lot of emphasis on physical looks, I try to look beyond that. No, it's just damn cold to be bald. 

I've only been totally bald for about 10 days now and I'm tired of it already. I have a big basket of hats to keep me warm. And I have a big basket of pretty scarves for my head too. But sometimes I just don't feel like wearing a hat or scarf or anything on my head. But then I'm cold. It's crazy hard to regulate temperature too. Hats inside are sometimes too hot. Hats outside are fine. But then when I go into a store I overheat. Scarves are fine inside but I'm always pulling and tugging and adjusting. That knot in the back of my neck is getting old. I bought a bunch of fabric to make my own scarves, some thinner cotton ones, but it won't solve the knot-in-neck problem. Forget turbans. I refuse to go there! 

And speaking of regulating temperatures, oh.my.goodness. I think my ovaries have been dying a slow death the past few weeks. I turned 46 last week, and even though I had a hysterectomy at 39, I had kept my ovaries and hormones and menopause was far off on the horizon. But lately I've been waking up 3-4 times a night HOT and sweating. My pillow feels like it was in the oven. I whip my sleeping hat off and throw it aside, flip my pillow and toss all the covers off. Sometimes I sit up and fan my head. About 5 minutes later I'm shivering and grab the covers again and snuggle under to get warm. I don't know if this is a side effect of the chemo or if the chemo is screwing with my hormones and causing night sweats, or, and I dread saying this, is this what a hot flash feels like? 

I'm so not ready for this part. 

Next time I will tell you about my trip outside of my comfort zone. 

Sometimes I forget...

Some days I feel like someone kicked me in the head and I'm down for the count. Yesterday was one of those days. My infusion was Herceptin only, which is a bio-therapy, not a cell-killing therapy. YES! My port worked perfectly. Although the new port site was still tender and swollen, and it took a few times to get the needle in the right place. This time I could feel the needle going in and hanging in there for an hour.  I stopped at the store to pick up some things, ran a few errands, and BAM! I was down on the couch the entire afternoon and evening. I could NOT keep my eyes open. I drifted in and out of consciousness... it was really weird. I even slept most of the night, minus one bathroom break. 

Today was the opposite. Once I got up and got Little C off to school I was going at 100 miles an hour the entire day. I drank my lunch while working. (I had ONE cup of coffee and my lunch was soup!) I was productive, I was busy, I printed, pulled, packed and shipped like a little worker bee. It was really weird to have all this energy. 

At one point in my day I walked past the black reflective surface of the microwave and caught site of my reflection and I thought... Oh crap. I have cancer. 

Sometimes I forget.

Third Time's a Charm... I hope.

I ended going to hospital on Thursday for a dye test on my port. Yep, it was screwed up royally. The catheter was too short and it had shifted and pulled and twisted itself inside of me. I peeked and saw the line in my neck when they did the xray. What a nightmare. So while they had me there, prepped, they went ahead and cut me open for another surgery. They completely removed the old (ha! three weeks old!) port and placed another one, along with the correct amount of catheter (I hope.) This one is a different model and size "better suited for the pocketed area" and the doctor said he "uses a different, better technique to insert it which should fare better." Now, why didn't the first doctor do that? (I can but won't insert a lot of swear words here!) I can tell already that the neck area is better. Of course I'll have a big knobby scar but at least it doesn't hurt anymore. This time the doctor made a new incision lower down, closer to my collarbone. And of course cut through the old incision a third time to remove/replace the port. 

I was awake again (conscious twilight) during the whole procedure and it hurt like hell.  I NEVER ever want to do that again. As a matter of fact, I don't want to see a hospital again. I was in SO much pain that night I didn't sleep more than an hour in the early morning. I gasped and moaned all night, every time I tried to move. Some of you know that I have a very high pain tolerance so this was scary for me. Two Tylenol3's didn't touch it a bit. The nurses the next day said it looked fine, no infections or abnormal swelling. They suggested taking Tylenol around the clock to keep a steady stream in the blood. Unfortunately, when the nurse peeled that clear plastic post surgical tape off (the one for extra sensitive skin) my skin was red and raw underneath again. My body is trying to tell me something too. It's sick of this abuse.

I feel much better today though. I slept really late, lazed around the morning and actually got to the grocery store in the afternoon. (ok, and the fabric store... but that's another story.) The area is still a bit swollen, hurts to put pressure on it (duh) but no more sharp stabbing take your breath away pain. I really really hope that this is it. Chemo was hard enough on Tuesday without having to go through the ordeal of surgery and so many painkillers. My poor liver and kidneys. I'm trying to drink a lot but having a hard time because of the hiccups from hell and subsequent acid reflux. 

Thank goodness for Posicles and Luigi's Italian Ice :-)