Bald...

Bald. My sister in pink just blogged about it…and I have read her post over and over again today. She was so honest and so…so…..”well, this is my head now, love it or leave it” and all I could do was shake my head. I have talked about my hair/head, I have moaned and groaned about it, I have saved a strand or two from the big “shave it off” day but I haven’t really talked about it much….not in terms of how I feel about it….

And I don’t know if I am brave enough to say what I really feel about it. I mean, I can type it here on my laptop no problem, I can even save it to my blog file, but will I publish it? (oh you should see what I don’t publish) I could use some liquid courage…but I can’t do that…and even if I could I wouldn’t because of how my mouth feels (I did mention that right? Chemo mouth is gross…I really do like to complain about that).

I was never a real big fan of my hair. Too thin, too curly, too frizzy, and too unmanageable for a person like me who never wants to make a big production out of getting ready for the day.

And now I am bald.

Well…I guess I am not technically bald.

I am mostly bald. When I first shaved my head it was just to a buzz cut…a few days later those little pieces started to fall out. Not all of them, just some. And the hair that remained grew…and that itched. So Alan buzzed it again. And some grew again…and itched again. So one day while in the shower I took a razor and very carefully shaved what was growing. I have done that twice now.

But I am more bald then not bald.

And I hate it. Really, really hate it. I miss my hair. Cindy Crawford herself couldn’t miss her hair more than I do.

My sister in pink blogged about going out in public with nothing on her head. So for those of you who think I am brave? Well, raise your glass to her, because I will never, ever, do that. Ever. I thought I was the type of person who could. But I can’t. No way. And if I wasn’t sure about it before, then my experience at the Ellis Island ferry made it clear.

I don’t want to show anyone, not even you, my bald head. And I thank all of you who know me for never asking me to show it to you. I know you wouldn’t “care”, but I would. I appreciate all you folks who saw it buzzed and told me I had a nicely shaped head but this bald thing? It’s not my style.

I even feel self conscious when just wearing a ball hat in public. Which I won’t do unless it’s just around my neighborhood. I rarely walk around the inside of my house without something on my head. I sleep with something on my head...

But after chemo is done? Then maybe, just maybe, I will proudly display it. Because it growing in signifies the end of chemo and that will be a good thing. A good thing, as opposed to what is going on now…the middle of chemo….yeah yeah yeah…I know I am half way done…but trust me, you are more excited about that then I am. Half way to you means half way…to me it means three more. See the difference??

Homeland Security

About a week ago my friends Susie and Jill took Michelle and I to NYC to see Ellis Island and The Statue of Liberty. We had a spectacular time, as I usually do when out with these two lovely ladies. If you haven’t had a chance to go there I suggest you make the time. We drove in to Liberty Park in NJ and spent some time checking out the 9/11 memorial there. Really makes you feel small when standing below it. And really makes your troubles seem more tolerable.

However, I must prepare you, before you go, for the security checkpoint you need to go thru before you get on the ferry to take the little trip over to Ellis Island.

It’s just like an airport. If you are like Jill, you carry a little Swiss Army knife on your keychain. And you can’t bring that on the ferry….oh no….

And if you are like me, you can’t wear a hat. It was a warm and sunny day and since we were spending so much of it out of doors I decided to wear a big beach hat as well as a scarf on my head. I do need to be careful in the sun, you know, so the hat was in addition to two layers of sun block.

Once I emptied out my pockets I was asked by security to take off my hat. I complied of course, but was shocked when the next words I heard were “do you wear that scarf for medical reasons?” I responded with a “yes” and then the security guard called over another security guard, a female this time. She said something to me that sounded a bit like Charlie Browns school teacher as she reached her hands out towards my head.

So of course I backed up a foot. I didn’t know what she had said and I was afraid she was going to pull off my scarf. Which would have mortified me. So she repeated herself, more clearly this time, and said she was going to “check” my head, and then she felt the top of my head thru my scarf.

Now, let’s think about this a bit logically, shall we? What on earth could I have put between the scarf and my head? A bomb? An uzi? The scarf is so obviously wrapped tight to my head. I understood, as I stood there near the NJ 9/11 memorial that it’s better to be safe than sorry, but still. Really? Really?

Can you imagine the reaction if the metal in my expanders had set off the metal detectors? Would the little cards I carry in my wallet explaining the expanders have been sufficient “proof” that I reside in cancerland? Or would I have had to strip down?

 

Where Is The Tears??

Something weird happened on the night before my third chemo infusion. I slept. A solid 6.5 or 7 hours. Granted, I swallowed enough pills to help a small elephant sleep, but still…I slept. And it’s about freaking time too….chemo doesn’t affect me that first day….but being exhausted does.

Another weird thing….I didn’t cry either.

I didn’t cry Monday night in anxious anticipation. I didn’t cry Tuesday morning while in the shower (albeit, my showers don’t last long…what with no hair or anything). I didn’t cry when the nurse brought me back to see the MD (actually, this time it was the CRNP I saw). I didn’t cry when the CRNP asked me how I was doing. I didn’t even cry when she hugged me. I didn’t cry when I signed in at the infusion center (I did however, pause a little bit before picking up the pen). I didn’t cry when I sat in the chair. I didn’t cry when they accessed my port. I didn’t cry when the chemo started to flow. I didn’t cry when Alan hugged me. I didn’t cry when Michelle hugged me. I didn’t cry at all yesterday. Not once.

And then I slept…sorta ok.

And felt fine this morning too. Which is a normal “the day after” feeling. And was able to make it thru the day…until dinner time. A good friend brought dinner to my home tonight and I hid out upstairs because I knew if I saw her she would hug me. And if she hugged me, I would cry. I really wanted to see her; I really wanted to hug her. I really wanted to cry too. So I don’t know why I hid out. It doesn’t make sense. At least not to me.

So now you know one of my truths. I cry. A lot. The night before and the day of chemo. At least, I did. This time I didn’t. So while I am being so candid, dare I say I cry all day the Friday after chemo? I have no idea why. It makes sense to cry the night before and the day of chemo. But the Friday after? I think that is caused by the chemo. I think it’s a little known side effect.

But maybe this time will be different. It has been so far.

Is it safe to say I have come to terms with chemo? That somehow a switch inside of me has been flipped and I have resigned myself to my current situation?

I don’t know the answer to that right now. I will let you know later…

Willing (??)

Did you ever wonder what it is like to walk into a cancer treatment center? I think the way mine is set up is nice, in a weird sort of way.

The weird part, in my opinion, is where my treatment center is. If you walk into my local hospital and turn left you walk by the pharmacy, the gift shop and then…really…nothing. A few conference rooms, a bathroom, one office and nothing else. It’s like the cancer center is tucked waaay in the back, hidden from the rest of the hospital….as if those of us in living in cancerland have to be away from the general public, just in case cancer really is contagious.

But inside the center…that is the nice part. Need to see your oncologist? Second window on the left. Radiation? The window on your right. Infusion? First window on your left. All your cancer needs can be met in one place.

But that is where the niceness stops. It’s a cancer center folks…what’s nice about that? If you are there you either have cancer, had cancer, or are with someone who has/had cancer.

When I go for my infusion I go to that first window on the left. No one greets you; I don’t say “Hi! I’m here for my 10:30 TCH”. Nope. I just write my name on the paper that sits on the clipboard on “my” side of the sliding glass window and then I sit down and wait for someone to open the door, call my name and lead me back to my chair.

I just write my name. On a piece of paper. That sits on a clipboard. And then I sit down and wait. My name lets the infusion folks I am there. That I am there and ready for them to pump me full of poison. Yes, I have willingly walked into a cancer center, willingly written down my name and I willingly allow them to lead me back to a chair where I willingly sit down. Then I willingly allow them to stick a needle in the port I willingly allowed them to surgically place below my collar bone. And then, with my blessings, the poison starts to flow.

Some days, my fear of sitting in that chair overwhelms my fear of cancer. Especially on my “good” days when I truly feel that surgery alone removed all the cancer from my body.

I pray for the day that a better way to treat cancer is found. It amazes me that I, and so many other people in this world, willingly allow their bodies to be so tortured.

Counting Up My Blessings.

I have been quite the bummer lately, haven’t I? Lots of complaints and moaning and groaning. Guess it rubbed off on Michelle because today in the car she started to complain about how this summer hasn’t been as much fun as last summer because mommy has cancer. So to cheer her up I started listing all the fun things we would do next summer when mommy was all better.

Poor kid, her “fun” has been my “fun”. I have introduced to her all the things I like to do and by default they are now the things she likes to do. Most of them involve being outdoors and getting wet. Rivers. Lakes. Water parks etc. The list for next summer is endless. I don’t think there will be enough time to do all the things we thought of. But making the list cheered her up, and by default it cheered me up too.

So then I started to mentally list all the things I have to be grateful for right now. Another endless list really. But here are a few that stand out:

My family. I don’t know what I would do if Alan wasn’t here being strong while I was weak. Not once has he complained when I have been too tired, too sick or just too damn lazy to do something. He encourages me to go to bed early, to nap, to leave it “up to” him to get whatever it is done. My parents. How lucky I am that they are so involved, that they live so close, that they are so helpful at so many times. I don’t think Alan or I could survive this time period without them.

My friends. The cards, emails and texts are so helpful. So encouraging. So present. I just know my friends are there, willing to help at any moment, whether it be for a ride somewhere, to watch Michelle or pick something up from the grocery store. You guys are just there, right where I need you to be.

The meals. This has been such a wonderful gift. Special love to Laura who put this together for my family thru www.takethemameal.com. This came in so handy after my surgery, and again now for the week following chemo. Even if I can’t eat or taste, my family is fed and we don’t have to worry about buying the food or preparing it. This has been a life-saver.

The wigs. Thanks to www.friendsarebyyourside.com and my friends at www.jmorgansalon.com I now have two wigs that I can wear when the moods strikes me. Sometimes, I just don’t want to “look” like a cancer patient and the wigs come in handy on those days. I’m thinking that as we head into cooler weather they will also keep me warm!

The “moms”. A group of neighborhood women who have banded together to make sure that anytime I need someone to watch Michelle, someone is available to do so. Makes me feel better knowing I am not always relying on the same two people to watch her and gives Michelle some play-date variety.

The cleaning. By diligently checking www.cleaningforareason.org I have finally found myself a spot on their list. Now, starting Aug. 20 and every 4 weeks after that for a total of 4 times, I will have 3 hours of free house cleaning done by a local maid service that generously offers their time and expertise to someone undergoing cancer treatments. What a relief this is. Because I don’t want to spend too much of my “feeling good” time cleaning.

Living. Again, I must say, the best side effect of chemo is life.

Sometimes…I forget that.

Time

I’m never quite sure what to say when someone says “isn’t time just passing by so quickly” and then looks to me for confirmation. Really? Should I think that? Would you, if you were me?

I suppose that if I look at the summer as just the time period that Michelle was home and not in school then yeah, ok, time is passing quickly.

But when I think about the six weeks that passed between my diagnosis and my surgery, when I look at the six weeks that passed between my surgery and the start of chemo, when I look at the four weeks that have passed between my first chemo and today then I can unequivocally say “no” time is not passing quickly. 16 weeks total have passed since I was diagnosed with breast cancer, I have another 11 weeks to go before I am done chemo treatments. At least 4 weeks of radiation to look forward too, and I don’t know how many weeks total will pass before I can have my exchange over surgery and how many more weeks total until I can stop having Herceptin infused and have my port removed.

Time….I feel slighted by time. Time is not my friend. Neither is the mirror but that is a story for another time…which is code for never because I’m not going there…

I think I have wasted too much time in my life. And to keep a positive outlook for the future at this point in time is, at times, hard. It is hard to feel positive when you feel like crap. And I do, at this time, feel like crap. I should have had a “good” week, and I should be looking forward to one more “good” week before my next chemo but unfortunately I feel like crap. Is it a sinus infection? Is it a dreaded Herceptin side effect? Who the hell knows. Sure feels like a sinus infection….And time is passing slowly as I try to recover from whatever it is that is blocking up my nose/head. Herceptin side effect? Well then this feeling could last for a year.

Which would make time move slower.

You can look at time any way you want too. But please refrain from asking me if it’s going quickly.  It isn’t. It won’t. And someday when this is all behind me, I still won’t feel like it went fast. This is a time period of my life that just takes time to get thru. One day at a time. Sometimes, on certain days, it’s one moment at a time.

A Little Truth

So here is some news that some of you may know….if you talk to me, then you know. If you don’t know me, or haven’t talked to me lately then you don’t know. Because it’s not something I have made very public, not something I have shared much….because I don’t want to be the person who complains all the time. I don’t want to publicly get into the nitty gritty of my side effects. I don’t want you to feel sorry for me, and if I complain, you will. I don’t want your pity….

But I’m going to share this one little side effect….little…really, it’s nothing compared to some of the others. So small it’s barely worth mentioning but it is the one that annoys me the most. The one that doesn’t really go away…the one I will deal with daily until my last chemo infusion, and then probably for a week or two (or three) after that.

I can’t taste anything. Really. My taste buds are dead…and it would be ok if at the very least there wasn’t any sensation to go along with that but there is. Sensation, that is. My mouth hurts. More specifically, my tongue hurts.

And I want you to email me your favorite smoothie recipe. And I want you to bring me frozen lemonades from Burger King.

The only good thing that has come of this stupid chemo side effect is this: I don’t miss beer/wine at all. I thought I would. But if I can’t taste it, then I don’t want it.

Coming Out Of The Fog

Once again on a Saturday morning I find myself dragging my worn and beaten body out of the dregs of chemo hell-land. It is truly such a strange place, a place that I would not wish upon anyone. It’s like a deep pit with slippery walls. There is no way to climb out; you can’t climb up such slippery walls. And your family and friends want to help so they throw you a ladder. Unfortunately that ladder is also slippery, and is missing some rungs, you go up a step or two but then fall back down only to have to start all over again. But it’s hard to start over again when you don’t have enough energy to even brush your teeth.

I have friends going thru to chemo right now, and I tell them to “embrace” it. To listen to their bodies, to sleep as much as they can, take the meds they need to ward off the horrible side effects and take double what they need to get some rest. But do you think I could follow my own advice? No. Why do I force myself to stay awake…especially when all I can do is stare at the TV screen? I mean, I can’t even hold up and concentrate on a book. Am I in some way trying to prove to myself that I am stronger than chemo? Well, if that is what I was doing I can assure you, I am not stronger then chemo. Next time…I sleep. Enough is enough.

And I have weighed the side effects of the Decadron against the side effects of the chemo and it’s a tie. So I will continue on the decreased dose of Decadron and just muddle thru the chemo side effects. Were the chemo effects worse because of the decreased Decadron? I don’t know. Different, that’s for sure. But I don’t know about worse. What bothered me the most last time wasn’t as bad this time. This time it was something else, completely normal according to the nurse at Dr. Sh office. Normal. What the hell is normal about flooding my body with poison? Really.

Today I look like a person undergoing chemo treatments. I am pale, so pale. Exhausted looking. Mostly bald. If you look close you will see I am missing some eyelashes, and my eyebrows are saying a long goodbye to me. I am feeling sorry for myself, for the person I see in the mirror. I don’t recognize her.

Tomorrow will be better. Right?