(Really Sour Lemons)

Saturday, December 22, 2012

Health, Hair, Huh? (WTF did I do?)

Well, it's been long enough, hasn't it? No, not my hair, just the time since my last update :-D (trying to keep a sense of humor here, bear with me...)  

On the health front, things are going well when you think about what this time last year looked like. Exactly one year ago, I had two surgeries done with and had an egg beater inserted into my breast so I could start radiation two days before Christmas. I had cut my hair short already, in anticipation of what chemo would do to me. I was scared but I knew I wasn't alone and I was ready to fight like a girl.

Over the course of the year I've had three more surgeries - two failed attempts at placing a port and one that finally got it right. I've had six rounds of poisonous cell killing chemotherapy, with 20 rounds of Herceptin weekly during that time. And 12 rounds of Herceptin by itself since. On January 9th I go for my very last infusion of Herceptin. Then I'm done. 

But it's never really over is it? It will never be over. I will live the rest of my life "on call", being extra vigilant about every ache, pain, bump and lump. Waiting. 

It seems pretty stupid to be worrying about hair, doesn't it? 

Today I wanted to get my hair around my ears trimmed. I went to a cheap walk in place. The stylist asked if I wanted the rest of my hair evened out. I said sure. It was starting to look a little out of control. When she was done, my first reaction (in my head) was "What the &*$% did I just do???" She took about 4 months of growth off my head. Now I have short hair. REALLY short hair. Sure, it's styled and layered nicely. But my gosh, did I mention it's short? On purpose? I'm so sad for all the hair that got chopped off, it took me such a long time to get to the point I was at. Then I think... I'm such an idiot to worry about it. Look at everything I've been through. It's only hair. It'll keep growing. 

But I never wanted a boy cut... 

Here are some pictures, for entertainment only :-D 

Here is a "before" picture of my bad-ass mohawk look. It was actually taken about three weeks ago: 
 And my Happy Mohawk look. I actually had several inches there on top of my head.
The back was getting really thick and wavy. I had already gotten it trimmed around the neckline and around the ears already.
Okay, I'm well aware that I look like a huge dork with a mohawk. It just wasn't a good look for me. I was just kidding around with the camera. I usually blow dried it so I had more of a flat look. Too bad I don't have a picture of my normal style. I had a very deep side part and swept it toward the front. The top was thick and I had a fringy bang. 

This is what my hair looks like today. It's a smidge over an inch long... all over, including the back.


  Fine. It's short. I can't get it back. I can't do anything about it now. Regret will get me nowhere. I will learn to accept it and love it. It'll grow again. And it'll fit better under that blue wig I wanted for Christmas... 

It's only hair... 
It's only hair... 
It's only hair...  









Friday, October 12, 2012

The Color of October

What October looks like.
I love Autumn but October has become a hard month to get through. Everywhere I look, I see Pink. Don't get me wrong, Pink is good... it's the color of Breast Cancer Awareness, Education, Funding, Research, and Camaraderie. A reminder to get your mammogram. It's also a big fat reminder "You are now a permanent member of this group!" A fighter, a survivor. Not that I would ever forget. I think it's important to remember, it keeps fuel in the fire to do something about this Beast we call cancer. 

To mark my one year Cancerversary (has it been a year already?) I have decided to participate in the Making Strides Against Breast Cancer 5K Walk this Sunday at the Chicago Premium Outlet Mall. I am raising money for the American Cancer Society, who have been amazing in the services they offer to cancer patients of all kinds, not just breast cancer. I am the captain of a very small team... it'll be me and my daughter, and my sister and nephew. Here's a very short video about the importance of the event. I love the lady who says "normally I would say to look at my face" lol.


If you would like to make a last minute donation to Team Cousineau, please click on this special message from me:  KICK CANCERS ASS  Haha. I'm at 84% of my goal of $1000, which is way more than I ever dreamed I could raise and I want to thank everyone who has already donated. It means a lot to me. 

*******

This past week has been especially hard. One week ago I had to let my fur-baby go. She was 15 1/2 years old and had a good long life with her family who loved her so very much. She was truly the best dog in the world and loved us back just as much. While I knew the time was coming, the event was sudden and traumatic and heartbreaking. I wrote about it on my other blog HERE. My friend Janet made me a little tribute to Maddy, I still want to cry when I look at it but it also makes me smile thinking of her with butterfly wings. Oh, the squirrels she can catch if she just had wings! 
I'm still getting used to life without her... every once in awhile I get a rush of adrenaline and think "I forgot to let Maddy out!" or "I forgot to feed her!" Habits are hard to let go... I don't need to let her out first thing in the morning or last thing before bed. No more walks to the bus stop. No racing through the house like a maniac every morning. No more dog waiting for me in the hall when I open the bathroom door. I feel like there's a little hole in my heart and I miss her so much! 

Moving on before I start crying again... how about a hair update? Even though there's not much to update! My friend P says that it's growing...  I guess because I see it every day it's hard for me to tell. I can tell that it's thicker all over, it looks like a head full of hair finally. But the length just isn't  happening fast enough. I suspect that the Tamoxifen I have to take is slowing the hair growth. My nails (fingers and toes) are the same. My finger nails break to the quick and flake. My toenails are just ugly... 6 months ago when I finished chemo that last round did a number on them. They started detaching about half way down and some developed a ridge at that growth point. Six months later, they've grown about 1/8". If the hair on my head and my nails grew as fast as the hair on my legs, I'd be happier! Here are some pictures: 

I don't think the hair looks like it's meant to be that way... yet. But I'm getting there. I think I can confuse some people already. I was watching the Ellen Degeneres show this afternoon and noticed her hair was pretty short... on purpose! And it looks pretty too.
Ellen Degeneres
Maybe in another six months mine will grow that much and I can actually style it. Truthfully, it really doesn't bother me that much. It's easy to take care of and it's kinda like my badge of honor right now. I worked hard for this hair, right? It's hard to capture it with  pictures but in real life it looks much better... it also comes with confidence. 

And that's what beauty is all about, isn't it?








Friday, September 14, 2012

Faux-hawk, mohawk, NOhawk.

Hellooo! 
Another update from me, you can all rejoice now. Okay you can stop now.

It's been exactly 7 weeks since my last update. Shame on me. What's new? Some parts of me are thrilled, some parts are very frustrated. Like my head parts. I want to rip my hair out. If I had any to rip out, ha! Seriously, my hair is growing SO slow it's maddening and frustrating. And it's not just my hair, but my fingernails and toenails too. My fingernails are so short I can't grab stuff. They keep breaking off shorter and shorter. My hair doesn't look a whole lot different either, maybe a bit thicker but not in length. Oh sure, but the hair on my LEGS is growing. How fair is that?? 
Here it looks a little blonde. But not in real life.
That's all there is! 
It's been FIVE months since my last chemotherapy session and this is all I have to show for it. Harumph. I can't even get a decent faux-hawk going. I still look like a chemo patient - because nobody in their right mind would cut their hair this short of purpose! I seriously thought I'd have some styling options by now. I know, I know, it could be worse. But I haven't done a whole lot of complaining throughout my ordeal so I'm making up for it now :-) 

Other than that, I'm feeling... just OK. The surge of energy I had a few months ago has left me again. I am exhausted more often than not. Some days I just can't make it without having to close my eyes for a bit of a cat nap. I hate that I rely on caffeine to get me through the day. Because soon I may have to give it up. (At least some of it.) I don't think the fatigue is the result of the chemotherapy anymore. I think it's the result of the crappy nights of sleep I'm getting. Or I should say crappy sleep at night. I feel like I have a newborn again. It's called a broken hypothalamus and screwed up temperature regulator. Or maybe it's called Tamoxifin? Tam for short... my newborn baby. Wakes me up about 4-5 times a night. 

Here's the routine. I go to sleep, usually shivering cold. *I cover up in a thin cotton blanket and a fleece blanket. It takes about 3 minutes to warm up and stop shaking. Then I start sweating. I throw all the blankets off of me and sometimes lift my tank top to expose my midriff, and fan myself cool. After about 5 minutes it passes and I can cover myself with the thin cotton blanket and fall asleep. About an hour later I wake up shivering all over. Repeat from * about 5 times a night. Is it any wonder I'm exhausted? 

I also saw an endocrinologist about my chronic vitamin D deficiency. Actually I saw the Nurse Practitioner because the doctor is booked 4 months in advance. After sitting for an hour answering tons of medical and history questions (which, interestingly enough, were the SAME questions I spent hours filling out at home before the appointment!) she came up empty handed. She talked it over with the Dr. the next day and they decided to increase my Vitamin D intake to 50,000 IU twice a week. I'll have to go back and get retested mid November and another appointment with the Dr. in December. They did ask me if I had any history in my family of Celiac disease. Thinking maybe a malabsorption issue? They are going to test me for it in November. Which is frustrating as heck, because if there's something I can be doing about it, like going gluten-free, I don't want to wait till December to find out about it. I am feeling incredibly out of balance in terms of nutrition and diet.

I had to have another MUGA scan of my heart last week. To see if the Herceptin is damaging it at all. I always thought my baseline number was 66 but it turns out it was 56. After three months of Herceptin it was 68. And this last test it was 61. I know no one is worried about it because anything over 50 is normal, so the nice tech tells me. He couldn't actually tell me the number but he told me anyway without actually telling me. He was so cute. Except when he gasped while injecting radioactive material into my vein. I hate it when that happens.

Anyway, I'm shivering now so I need to bundle up and get some sleep. I shouldn't have had that 10 minute cat nap at 9:30 tonight....  I'll let you know when my hair actually starts growing and something interesting happens.

Thursday, July 26, 2012

50 Shades of Grey Hair.

I've been getting some subtle (and not so subtle-you know who you are) hints that I need to update my blog. Well, I guess they're right. I see it's been awhile.


Life has been slowly getting back to normal. Whatever that means. I have a feeling that nothing is every really going to be normal again, but I'm finding my "new normal".  It has been 13 weeks and two days since the last chemo session. My body is thankful that it's over. I am thankful that my body handled it as well as it did. Every cycle I could feel it rebounding and healing on a daily basis. I have a much greater appreciation for the physical body, what an amazing machine it is! 


So, 13 weeks out... how goes it? Very well I think. I had a checkup last Monday with the oncologist and he mentioned 4 times how well I'm doing. Of all the side effects I was experiencing, I have very few remaining. The neuropathy remains in my toes on my right foot. They are just slightly numb. My feet get a bit numb when I walk for more than two miles. (Yes, did you hear that? When I was on vacation last month, I took some long walks. I had the energy to go for 2+ mile walks several times a week.) The surgery site (ground zero) is still pretty tender inside. And I still have night sweats and day sweats. Okay. Hot flashes. I just hate that word. The neuropathy should go away. The tenderness in the breast should subside. The hot flashes are here to stay. 


I started on Tamoxifen on Wednesday. I wasn't looking forward to this at all. I've heard horror stories about this drug in the past. And I don't want to hear any more. So if you're inclined to tell me how you reacted so badly, please don't. I need to take this medicine. Statistics show that women who partake in hormone treatment in addition to chemo/radiation double their chances for the cancer NOT coming back. I bet that could have been said a better way... but my brain function is probably the other thing that is still effected by the chemo. 


Focus Lisa. I feel like I have developed some sort of ADD. I have a hard time focusing on the task at hand. My brain is always going and going but it's hard to settle down and get something done from start to finish. I started making lists. Sometimes my brain gets so overwhelmed by all I have to do that it just wants to shut down and sleep. At times it's hard to get a thought out. Other times it feels manic and just wants to make friends.


Does anyone want a hair update? I haz hair! It's about 1/4" to 1/2" long. The front/hairline is growing a lot slower than the back and sides. It's not coming in curly but that's okay. I can't seem to get a decent picture of my head though. Most pictures you can't really see my hair, or there's a glaring bright reflection on my head which looks funny. I'll have to ask hubby to try to get a picture of my head. Wait, I just stuck my head in front of my laptop's photobooth camera. You can see me in all my unmade-up glory, lacking eyebrows and eye makeup and all. I look a little like my brother.  (It's weird. During chemo I started wearing makeup again and now I feel nekkid without it. Especially my eyebrows.)
I fear that I've seen the last of my blond tresses. Unless it comes from a bottle. Somebody described my hair as "salt and pepper" the other day. Yes, the only thing 50 shades of grey in my house is my hair! It's still in that awkward stage... too short to actually look like it was meant to be that short. But not quite that "bald-chemo" look either. I am highly recognizable for sure! 


It's funny, I was at the CHA (Craft and Hobby Association) Tradeshow last week. I took three workshops on Monday, walked the floor with my husband on Tuesday and went back Wednesday by myself to study the "make and takes", meet some vendors, and attend a few conferences. A lot of people recognized me from day to day. (I've always been a wallflower and blended into the woodwork.) I just smiled a lot. I met a fellow breast cancer survivor who approached me and we traded war stories. It was quite an experience. 


I'm glad to have my hair back though. It's hotter than Hades here in Chicago this summer. I haven't worn a scarf since vacation mid June. Hats are for shading from the sun. I'm not embarrassed the least bit. I even feel a little bad-ass. And I've only had positive reactions from people, bless them all. I've developed the habit of "petting my head" when I'm nervous and need calming down. You know how they say that stroking a dog or cat reduce blood pressure? So does petting my head. My blood pressure is excellent!


I'll talk to you all soon!





Thursday, June 21, 2012

A Spoonful of Wisdom

I did it. I did something that was very difficult for me... Those first few baby steps that have opened the door and released my fears to the wind. I have proudly displayed my hair-challenged head to thousands of people. A cloudy day, I didn't need my hat and it was way too warm for a doo-rag. I went without. And tomorrow it will be easier.

I'm wondering... What did I fear? I didn't think people would laugh at me. Maybe I didn't want anyone to pity me? I don't like being the center of attention... I certainly don't think I'm ugly. Why did I insist on slipping that hat on every time I got out of the car and around other people? I still don't really know.

All I know is that I walked around a crowded tourist destination, which included a short hike along a lake and a nice lunch with my awesome kid, and the world didn't end. Kids didn't run screaming from me. As a matter of fact, a little boy named Benjamin introduced me to his newborn brother Alexander, as I was walking past his family. I engaged him in conversation for a few minutes, just wondering for a few seconds what his dad was thinking of the bald-ish chick his son was talking to.

An extraordinary amount of women looked me in the eye and smiled and said hello. Like they knew something.

I encouraged my daughter, who is into making stop motion movies with her American Girl doll, to take "Izzy" along so we could work on a photoshoot. She was embarrassed to be seen posing her doll and snapping photos of it in front of other people. What is wrong with this child? She's not embarrassed to hang out with a bald mom but doesn't want to be seen taking pictures of a doll? I tried to tell her that it doesn't matter what other people think. They'll most likely think she's cool for doing something like that. I said they would not laugh at her. But mostly to "not let your fears of what others 'might' think stop you from doing what you set out to do."

Then I thought... DUH!

Lesson learned.

We went to the beach later and I didn't wear my hat. And I'm not going to tomorrow either.

Monday, April 30, 2012

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?


Monday, April 23, 2012

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.





Monday, April 9, 2012

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.


Monday, April 2, 2012

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.

Monday, March 19, 2012

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!

Wednesday, March 14, 2012

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.



Monday, March 5, 2012

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! 

Tuesday, February 21, 2012

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! 

Monday, February 20, 2012

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. 

Wednesday, February 8, 2012

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.

Sunday, February 5, 2012

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 :-)

Tuesday, January 31, 2012

Sucking Sour Lemons

Today was a sour lemon sucking day. I had my Strong Chemo Date (TCH) with the lovely aqua chair. I got there at 9:30, checked in by 10:00 and for the next 4 hours two different nurses tried to get my port to work. It wouldn't cooperate. They used about 12 syringes of saline, and a few of heparin, to flush it out, but it would NOT give a blood return. Under no circumstances. I laid flat back in the chair, I stood straight up, with my arms straight out, with my arms in super-cleavage making position, bent over at the waste-shoulder hunched-deep breath, neck this way, neck that way, one foot in one foot out do the hokey pokey turn all about... nothing worked. Once the nurse got a small blood return, very spotty and weak but just enough to flush the saline out, and then nothing for the blood tests they had to run. The last resort was putting a chemical in the catheter that would dissolve any junk that might be in there. They affectionately call it "chemo draino." Conclusion: My port does not work. 

Remember my port? I was supposed to have it placed on a Friday? The doctor doing the surgery (in an operating room under anesthesia) couldn't find my subclavical vein and punctured an artery instead. Instead of risking puncturing a lung she just closed me up and gave up. Then 2 days later the next Monday I had to go to Interventional Radiology and have them do it under fluoroscope guidance. I was awake and aware during that whole surgery and probably heard things I shouldn't have. I didn't have a good feeling when it was done. Just a gut feeling. 

The port site is finally healed. The whole area is numb so I barely feel the needle punctures. The scar is healed. The neck site is really ugly. I can see the catheter sticking out when I turn my neck and there's a visible bump where the catheter turns into my vein. You can even see it on the pictures I posted. I still occasionally wake up with a cramping like pain at the neck site but for the most part my head/neck aches have subsided enough to tolerate without drugs.

Now what happens? I will have to go back to the hospital sometime this week and have a dye test run to see where the problem is. If the catheter is kinked or too short and running into the wall of the vein instead of bending. (My guess is the latter, based on what I "heard" in the OR) How do they fix it? My guess is to go back in and straighten it, or take the catheter out and run a longer one. Another surgery? More scars, more tape, more blisters, more pain, and a helluva lot more money to pay. 

I'm feeling a bit down tonight. I'm super tired. A bit depressed. But I guess I just gotta do what I gotta do. I have to have port access, it's been strongly advised by every nurse I talked to and every doctor I talked to. I have lousy vein access and they can only use one arm. I have approximately 16 more weekly infusions and 13 every three weeks afterwards to still complete over the course of a year.

I'm starting to hate lemons. I'm going to bed.



Monday, January 30, 2012

Becoming Brave.

The time was right. On Sunday I finally got brave enough to cut my  hair off. Actually, my husband used his clippers and cut it for me. He knows how to use those things better than I do! First he did his best to give me a mohawk. This is my "I'm in pain, take the picture quick while I'm giving you a horse smile" picture:
And a side view. I think you can see the shape of the Mohawk better here. The long part was set for one inch and the short part is shaved to 1/8" I think.
We laughed about it. We decided Michael will never be a barber for other people. Just himself. (As a matter of fact, after it was all done, we had the exact same haircut! Hmm.) 

Afterward he cut it all off at the shortest length. I couldn't believe the pile of hair on the floor! And all over me. What really surprised me was how dark my hair looked in that pile. I've always been a natural blond. When I lived in Arizona it was a nice golden blond. But lately it's turned really dark. With a beautiful streak of grey in the front. On the floor it almost looked black! I wonder what color will grow back in... ?

This morning I took some pictures of my buzz cut in the mirror. Some of them looked really painful. It's hard to have a natural look on your face when you're taking your own picture. The jokes you tell yourself to make you smile or laugh naturally just aren't all that funny, ya know?
Bah. It's not so bad. It's just really COLD! I can see where the short hairs are already falling out so I won't keep this style for long! I had to run a lot of errands today and was a bit nervous to go out in public for the first time like this. But you know what? I felt great today. Physically and mentally great. I think that helped. I started the day out with a headscarf with my new grey fleece hat over it (it was cold this morning!) and a down coat. As the day wore on, it got warmer (upper 40's!) and the sun was shining and I soon ditched the fleece hat. I walked around IKEA and JCPenny with my headscarf and no coat and I lived to tell about it! I just held my head up and strutted around and smiled if someone looked at me. It was all good. I don't know why I was so nervous about it. Silly me. 

Oh, I did get one comment from someone. At Barnes and Noble, when I was still wearing the fleece hat over the scarf. I was at the cafe getting some coffee and when I was walking away, this little boy, maybe about 3, saw me and tells him mom "she's wearing a hat. And she has a cookie." Observant little bugger! (note: I had a cookie. I am calorie storing. The next few weeks I will feel like puking around food and will probably lose another 5 lbs. That's my story and I'm sticking to it!) 

Here's an awesome positive thing. It took me exactly 15 minutes this morning to get a quick shower, put on makeup and dry my hair (hehe)! That means I can get 15 minutes more sleep in the morning, woohoo! 

Tomorrow I will be in chemo all day again. The make-me-feel-crappy stuff. But I know what to expect this time around so I will be more prepared to kick some ass and feel better doing it. Maybe I'll have my sister take some pictures. She can make me laugh.



Thursday, January 26, 2012

Hair today, gone tomorrow.

Yep folks, this is it. The end is near. The end of hair. Yesterday I was taking a shower and shampooing up the tresses when I looked at my hands and found gobs of hair. I rinsed and pulled more hair off my hands and between my fingers. And had to pick it off my body.... and the tub floor. Today was the same shower scene. At first I put on a shower cap thinking I could preserve some of the hair from coming out, then halfway through I said screw it... I'm not going to save anything. As if I could. I just enjoyed the warm water on the back of my head/neck (because I'm still living with the dang headaches!) And then trying to get the loose hairs off my body. Not fun. Tonight after brushing my teeth I started combing my fingers through my hair to get the loose hairs out so they wouldn't end up in my bed. It was freaky. Again, just pulling handfuls of hair strands out. And a few clumps. Ew. Looking at me, you can't really tell that I've lost so much hair. I started out with a lot so I'm guessing it'll be a few days before it looks thinner. Maybe it'll all come out in clumps tomorrow. Who knows? 

It just sucks. Another big change. Sure, it means the chemo is working. That's a good thing. But I could tell the chemo was working because of my raw mouth sores and screwed up GI system too. But the hair thing... it's announcing to the world, to strangers, Hey, I have cancer! Well, it's no secret. I didn't want to keep it a secret because I couldn't bear going through this alone. I told most of my neighbors. (Actually I told a few neighbors and one of them told everyone else, lol) All my friends know. I even told the cashier at the grocery store, and of course the pharmacist. But they all know on MY terms. I chose to tell them. Walking around with no hair and looking like a cancer patient takes the choice away from me. 

Then there's the question: to wig or not to wig. I sat down with the American Cancer Society wig boutique lady and picked out a wig. I don't have it yet. But I'm weirded out by wearing a wig. I picked a cute style, but I still look at a stranger in the mirror. It still looks like a wig. I'm not sure if I would be more self conscious wearing a wig or wearing a headscarf. It seems like wearing a wig is like hiding the real me, whereas wearing a headscarf or hat is just the me the way I am. Love me or leave me alone. 

I knew it was coming. I'm trying to be brave about it. Trying to laugh a little about it. C and I were watching you tube videos about tying scarves on your head and I started wrapping a turban on her head. She said she looked medieval and I said she just looked evil and we were laughing so hard. That's a good thing. People are giving me all sorts of advice that I appreciate so much. But what it comes down to is what I feel I should do and when, on my terms. I am going to take control and shave it when I feel the time is right. I suspect it may be this weekend. I am going to give myself a mohawk first though, and take a picture. And laugh. Maybe cry a bit for the loss. Then put on a nice warm hat and go on with life.

More tomorrow...

Sunday, January 22, 2012

Hope Floats

I love this poem by Emily Dickinson.  And now I have more reason to love it because it reminds me of all the beautiful souls I've met. And even though I haven't "met" them all in person, I call them my friends because strangers can't possibly touch my heart like these beautiful people do. More about that later... I love you all, you know who you are!!

Hope Floats
"Hope" is the thing with feathers—
That perches in the soul—
And sings the tune without the words—
And never stops—at all—

And sweetest—in the Gale—is heard—

And sore must be the storm—
That could abash the little Bird
That kept so many warm—

I've heard it in the chillest land—

And on the strangest Sea—
Yet, never, in Extremity,
It asked a crumb—of Me.
-Emily Dickinson
 
 
 
 
 

Saturday, January 21, 2012

Finally... a photo!

We've been meaning to take a family photo since before Christmas. We just never got around to it. We want to write a new "About Us" section on the Artistcellar website and include a picture of ALL of us. Not just me, but Michael, the webmaster and designer of all those fabulous stencils. And of course Celia our little product tester and administrative assistant (and chief nagger at mom to clean up her office space!) 

I insisted we do it THIS weekend. Before I lose all my hair. I'm not sure how much longer it's going to last. It's been awfully crawly lately, sometimes the scalp feels like it's sunburned when I scratch it. It's not falling out in clumps yet, but it's been 12 days since my TCH infusion. The American Cancer Society lady said it normally starts around days 12-14. So we'll see.

Of course a photo meant I had to clean up my studio a bit. Which is a good thing. Because I lost my desk again over the past month. And now that I can see it again, I will have room to work on some artwork on Sunday. My hands have been itching to get paint on them and do something creative. So this is the picture we came up with: 

 Oh yeah, it only took about 10 takes... goofy smiles, weird head angles, blinks... what you can't see in this photo is all the rib poking going on, to make us laugh naturally. Thank goodness for self timers and digital cameras.

Working on a more serious post for tomorrow. AFTER I get some art work done! 



Thursday, January 19, 2012

Smiling People

Another fairly productive day. My husband said I seem "almost normal." Gasp. Who the heck wants to be normal? Well, aside from anything I put in my mouth making a beeline through my system to the finish line, and my mouth dry and sore and burning, and my nose stuffed with clotting blood (ew) I do seem almost normal from the outside. I feel strong. I'm in a good mood. 

It was weird this afternoon though. After Little C came home from school I grabbed her and we went grocery shopping. Not my usual time to go grocery shopping, I normally go during the day on Friday. But since we're supposed to get a big snowstorm tomorrow, I moved it up. Apparently between the hours of 4:30 and 5:30 it's Happy Hour at the local Safeway/Dominick's. People (women) kept looking directly at me and SMILING. Big toothy smiles. No less than 5 people did this. Of course I smiled back. After I checked my head to see if I was wearing my goofy penguin hat. (Nope) After the 4th woman smiled at me, I turned and asked C if I had boogers on my face or a sticker on my forehead. (Mo-om!) It was making me paranoid. Like they knew a secret. Or maybe they knew my secret? Was I wearing a "fellow warrior" vibe? Hmm. I don't "look" any different, I still have my hair... Or were they just shiny happy people? Truly, I'm not used to it. When I normally go to the store there are frazzled moms or Mr. Moms hauling screaming toddlers around, or people wandering around talking into their phones-or worse-hidden headsets so they appear crazy. There are focused people who never look you in the eye, let alone smile openly. Except for the pharmacists of course. (Hi Judy! Hi Jerry!) Everyone else pretty much ignores everyone else. See what I mean about weird? 

I don't know. I think I could get used to it. I kinda like being smiled at. But I'll take the penguin hat off first, just to make sure they're not makin' fun of me. 

(Note to sister: I love my hat. It keeps my ears really warm. And C is not embarrassed when I wear it!)



Wednesday, January 18, 2012

Zzzzzz....

Very productive day. Cold walk with dog. Worked. Ordered. Emailed. Picked, packed and shipped orders. Packaged stencils. Picked up bags from printer. Picked up bagel for lunch. Helped make cake pops. And dinner.

Headache. 
Must. 
Sleep. 
Now. 
XOXOzzzzzz.

Tuesday, January 17, 2012

Hello, lounge chair!

I had a date with the aqua green vinyl lounge chair again today. It was an easy treatment, just 30 minutes of a bio-therapy called Herceptin. They gave me Benadryl beforehand so I really didn't care what they did. But wait... if it was only a 30 minute treatment... why was I there from 9:30 to 12:30? Hmm. Something stinks... 

But seriously, I had an appointment with my Medical Oncologist during my treatment. (Ha! The nurses said I would be DONE before my appointment! Scheduling, Pffft) I had to waltz Alberto my IV pole across the hall for the meeting with Dr. H. She spent over an hour with me, going over my side effects and why and what I can do, etc. She prescribed some painkilling cream for my headaches and some Magic Mouthwash for my mouth sores. And get this... she prescribed caffeine, as in a mug of coffee in the morning, to help my headaches! And... wait for it... Ice Cream! She said it would make my mouth feel better. (Um... yeah! Isn't that what it's for?) We're not worrying about calories either. Probably the first and last time in my life I need to eat more calories. I think I love my doctor... 

I was in a good mood when I got home, feeling better mentally. Compared to this morning of course, when I could have started my own Cancer program called "Feel like crap, look crappier." Anyway, I felt better when I got home, albeit a bit tired from the Benadryl. By the afternoon I was ready to kick the UPS man's ass for leaving 2 bundles of cardboard boxes in front on my garage in the sleeting rain. For the amount I paid in shipping for PAPER products you'd think he could at least ring the damn doorbell. I was home! Someone's head is gonna roll when he shows up at work in the morning. Then I'm gonna place a lot of orders tomorrow so he'll have plenty of opportunity to get this right!

I found my sense of humor. It was hiding in the back of the closet where I kicked it last week.

Monday, January 16, 2012

Raging Hormones?

Something was raging today. I felt great once I got up. This is the first day since port placement last Monday that I didn't have a constant Tylenol buzz going. I had enough energy to clean and vacuum the bathroom AND my studio. I folded and put away the laundry. Worked on some business stuff. Stuff I NEEDED to do. Not because no one else will but because it helped me feel useful and productive. I hate all the sitting around "resting" stuff. I know, sometimes it's all I can do, but I get mentally antsy when I don't feel like doing anything physically. Hubby has been doing everything else around here, Little C is doing everything she can to take care of me. I really needed to do something normal. It's very hard for me to not feel like a burden when I've always taken care of things before. 

Then towards the afternoon I tried printing something and NONE of the three printers in the house would connect to my new laptop. And my old laptop wouldn't even connect to the wireless system. My husband had just couched himself in exhaustion after working on the website all day. I was so frustrated. I just wanted something to work the way it's supposed to. I just burst into tears. And cried for half an hour. Over a stupid (or three) printer. Ugh. 

Night sweats. Crying over Stupid. I think my hormones are dying a slow death.

It's all relative

When people ask me how I'm feeling I'm never sure how to answer. Okay the cashier at the store gets a "great! And you?" because I doubt they really want to know, right? But when friends and neighbors ask... What do I say? "okay..." or "tired..." or ?


It's all relative isn't it? Compared to Friday I had a really good day. Of course my good day included tummy upsets and headaches and biting the inside of my lip again. Compared to my normal days before chemo, my day sucked. But...


In the interest of focusing on the positive, I'll say it was pretty good despite the little health irks. I was able to eat without problems today. I was able to help hubby a bit with some work, preparing the journaling section for the website. We did some product shots and some product descriptions (honestly? He did 90% of it, but I was glad to contribute my 10%) I even made dinner tonight.


So while my day started out shaky with crackers and Tylenol at 7:00 a.m. I fell back asleep until 9:00 a.m. I awoke to the smell of homemade waffles cooking and had no doubt that I was loved. It makes all the difference in the world.


Let's have another good day tomorrow, shall we?

Saturday, January 14, 2012

Crawling Out...

Yes. Today was a better day than yesterday. I don't think I could have handled one worse. After a slow awakening, Little C and I made some German Pancakes for a late breakfast. For me, breakfast is the easiest/best meal of the day in terms of hunger/how I feel. And German Pancakes are the best! 

In the afternoon I actually felt well enough to venture out with my little helper. Get this... we went to Chik-Filet for lunch. A REAL lunch. (Okay, I realize "real" is subjective here, but it wasn't plain crackers!) I had three small chicken strips and a few waffle fries. Hiccuped through the meal but kept everything down, woohoo. Little C helped me grocery shop and then we walked around Blick's Art Supply store for a bit. (Cause you know, I haven't been there for at least a few weeks!) Came home and took a nap, but still... I felt alive, I tell you, Alive! It was nice to do something "normal" for a change. 

I'm still on the Tylenol drip (I wish I could hook a drip up to the port!) around the clock. With the drugs my head/neck is tolerable. A little bit of aching in my legs but heck, I'm not complaining about that. My tongue continues to feel weird, my taste buds are dying. Several times throughout the day my scalp feels like it has little ants crawling over it, I think that's my hair follicles dying. The skin on my face was feeling crawly a bit too. The area around my port is itching like crazy as it heals. It's not the port this time (although that sucks and is painful too) it's the skin that was torn apart by an allergic reaction to any/every kind of adhesive the hospital used. I came home with another batch of raw blisters where they used that clear tape to keep the bandages on. The Onc Nurse said I have the most sensitive skin she's ever seen. Great. I've gotta stop trying to be the "best" at everything. So try covering the steri-strips and open sores without using more tape, I dare you. Ugh. I look like someone beat me up. 

Yes, despite it all, it was a better day, physically and mentally.







Friday, January 13, 2012

Can I quit?

I don't want to do this anymore. 

I'm embarrassed to admit this... but I'm going to because I want to be honest. I melted down this morning. I couldn't muster the energy to walk Little C to the bus stop... I felt horrible physically and mentally. I looked out the window at her walking down the street alone and burst into tears. I felt sorry for myself. I was super angry. I'm sick of this. I don't want to go through another 5 shitty cycles of this. I don't know why this is happening to ME. Why? Blah Blah Blah. 

I went back to bed with my iPad and read my email, FB comments and blog comments and cried for another 1/2 hour or so. Took some more Tylenol and stomach acid reducer. Got up at 10 a.m. got a long warm shower, dressed and went to work packing and shipping orders. I needed something to focus on. Little C had half day and we made some lunch together, Tilapia Filets and Quinoa. My stomach felt a bit better today, with the exception of hiccups from hell still. 

I don't want to be the brave one. Or the strong one. I just want my old life back. I hate that I am putting my family through this. I'm just tired and depressed and want to quit. I hate that I don't really have a choice. I have to get through it. I don't really like the alternative, ya know? 

Thanks you everyone for your strength and kindness and prayers. I will make it. 

I'm hoping tomorrow is a better day. 









Thursday, January 12, 2012

Kicked in the Head

That's how I feel today. Like I got kicked on the back of the head. I took a nap sitting up on the couch because it hurts too much to lay down. I don't know if my neck muscles are just screwed up from sleeping funny, due to the pain of the port incisions. So far the Neulesta shot hasn't settled in any major bones. But then again... my neck and head kind of feels like all my glands are swollen like when you get the flu. Hmm. 

I had a hard time eating again too. I'm hungry in the morning but I have to make myself eat lunch, and by dinnertime I'm just feeling icky. And this hiccuping is making me crazy! Every time I drink something I end up hiccuping for a few minutes. Or when I eat, my stomach does this weird one big hiccup/heave. It feels like everything just wants to come back up. But I'm not nauseous. Definitely something to talk to the nurse about next week. 

I had grand plans for exercising lightly during my ordeal. I walk the kiddo to the bus stop with the dog and go a bit further and home again. That's about all I can handle. We had our first snow fall today and it's usually my job to shovel the driveway. There's no way. I am extremely grateful that my neighbors stopped by (without my asking or prior knowledge) and shoveled the driveway. 

I also had an appointment at the American Cancer Society's wig boutique. How depressing to look in the mirror and not see yourself staring back. They also have a program called "Look Good, Feel Better" about how to take care of your appearance when going through treatments and feeling like crap. They teach you how to take care of your skin and put on makeup - when you know you look good, you feel better about yourself. I missed the January class which was this past Monday. Next class is the first week of February. I'm trying to take care of myself. I washed my hair this morning (first shower since surgery Monday!) and put on a bit of makeup, real jeans and shoes, etc. It really does make you lift your chin a bit higher and feel like hiding a bit less. I'm trying...

I wanted to share an article written by David Haas, Family Hospitality Coordinator at Mesothelioma Cancer Alliance. It applies to any kind of cancer. It's about "the benefits of fitness and eating healthy during and after a diagnosis of any kind of cancer. Each cancer has it's limitations, but if one can keep a healthy body, they can have a better chance to overcome this awful disease." Hmm. It sounds like he's been rooting around in my brain the past few days... 


Stay In Control of Your Body

Surviving cancer is an exhausting process, and though there is a great deal of
emphasis placed on recovery, you should also be thinking about control. After
going through mesothelioma or any other kind of cancer, you may feel as though
everything is out of your control. Reasserting a feeling of control in your life allows
you to stay positive and motivated during your treatment and your recovery, and it
can also drastically improve your outlook on the way that your life is going.
According to Dr. Matthew Hoffman at WebMD

Studies show that not only can exercise prevent cancer, but that it can also prevent
it from recurring. Exercise gives you an opportunity to use your body and to make
it do work. In the process, you will be releasing endorphins that give you a natural
high, and you will also be helping your body recondition after what might have been
a long rest period. Choose a form of exercise that you enjoyed before your diagnosis,
or learn a new activity that you have always wanted to try. Always consult with a
doctor before starting any new exercise regimen.

Another way to take control of your body is to focus on your grooming. Cancer
treatment is a highly stressful time, and you may have been doing the bare
minimum for a while. Go to a spa and try a full body treatment or simply take a few
small minutes out of every day to pamper yourself. Even painting your nails can
have a positive effect. Baby your skin, paint your nails, or accessorize your favorite
outfit in a new way.

Spend intimate time with your significant other. Sensuality is another thing that
might have been pushed aside during the stress of cancer treatment, and it may be
a thing that is hard to reclaim. Speak frankly with your partner about your needs
and how they might have changed or been altered. While speaking about intimate
matters may be awkward or uncomfortable at first, it can also be liberating to talk
about your body in a way that is unrelated to cancer. It establishes you as a sensual,
sexual person.

If you are recovering from cancer, it is time to make your body your own once again.
Take control of your body and remember that it is a part of you and that despite
your illness, it is still a beautiful and important thing.


Thanks David. 
Hopefully tomorrow will be a better day. I did find my Norco prescription so tonight should be a better night. A good night's sleep can make a big difference too :-)