Good Sleep, Good Week

I will confess I have Thursdayphobia.

Thursdays are my regular hang out at Tallahassee Cancer Institute Day. Cocktail days it's about 4 hours, herceptin only days - about an hour to an hour and a half..

As evidenced by my previous insomnia entry, anxiety starts to build in me and I just can't sleep.
My regular GP gave me a prescription in January for xanax - an anti-anxiety medication. Now, mind you, I really hate to take medication. ANY medication. I have learned that yes, go ahead and take Tylenol (or whatever) when you very first start to feel a headache, don't wait until the headache is entrenched or you will keep it for days. And amazingly enough (!) it works when you take meds soonest. Isn't that weird?

Since filling the prescription for the xanax, I have taken it like 2 or 3 times prior to this week.

So, upon discussion with a few loved ones, a light bulb moment once again occurs. Anti-anxiety medication is NOT for taking once you are in a full state of anxiety, nor is it taken in order to GET anxiety, no - it is to prevent anxiety. What a concept!

Tuesdays the anxiety starts, the Thursdayphobia. Thus, THIS week, I took a pill Tuesday evening and Wednesday evening. Oh MY GOODNESS!! What an amazing difference! What an amazing benefit!! I actually slept both nights. I mean out like a light, hard as a rock sleep.

Yesterday when I went in for herceptin infusion I didn't feel exhausted, I didn't feel overwhelmed, I didn't have fear trying to climb up and take me over. I can NOT say it was fun. It is really not fun. On the other hand, I had a certain calm acceptance of the inevitability of this whole process, I was not as woozy and GROSS feeling afterwards, and I took a shortish nap when I got home. I had asked my beloved to wake me up no later than 2 pm (I didn't want to sleep too long so as not to disrupt my sleep cycle) and I actually did wake up about 2:08 whereupon he told me it was close to 2:15. Okay - that's not bad.

Next week - full chemo. This means next weekend is out of the question for any meaningful activity and or eating.... So no July 4th celebration for me!! Therefore - we are having hamburgers and hot dogs and such this weekend! Blue cheese burgers, homemade cole slaw, etc., etc.. Fruit!! yum!! Obviously - I can eat right now and most things taste pretty close to how they should.... You have no idea how exciting that is for me!!!

Insomnia - again

I remember sleeping. I think....

I generally take about a week or so after chemo cocktail to NOT write. It's just a very difficult time and I don't want to even seem to complain. I have long contended that a day above ground is a good day and I am inclined to feel that even more strongly than before. I am not a complainer nor a whiner AND so saying -

I am tired. Each "cocktail" is a different version of discomfort, ill feeling, fatigue, etc. Universal among them has been insomnia.

First of all, it is difficult to sleep when you are pretty sure you are about to eject the entire contents of your body any second. Then you also are achy, uncomfortable, and maybe sometimes it's just that you are TOO tired to sleep.

There also exists that nagging feeling in your mind about all the things you would like to yet accomplish and so your brain just will NOT shut up.

It is 2:44 as I write this. AM. I've watched TV, I've prayed, I've run through a litany of deeds to accomplish - most of them minor, some of them not so minor.

I'd like to write letters to certain family members. Not everybody I know - just people that God has put on my heart to say something to. A living testimony of Word from God, from me, from love. HELP letters, you know. (He Extends Love Perpetually, for those who don't know.)

I don't feel like I'm about to go out for the big trip, mind you, it's just that I think I should do this while there are certain thoughts in my head. It could be many years down the road before they are handed out at my funeral which I would like to start planning, oh - now would be good.

I had a pretty good evening. Ruben went off to Christ Renews His Parish and I decided to have a "spa" night.

This heat has been killing me - and we have this lovely garden tub. As you may or may not imagine, I have been having some issues dealing with body image. The last time I took a bath in the tub I couldn't be in there for even five minutes. It just hurts my heart to see my wrecked body right now.

It is getting better - but it is going to take a while. And I did enjoy my baths with music and bubbles, oh lovely.

So - to overcome this feeling of heat, and I can't go swimming right now - I have to stay out of the sun, etc.; I filled the tub with tepid water, put on my swim suit and a Lady Antebellum CD and had a glorious 20 minutes or so soaking up some coolness to my overheated little self.

This I will do again!

And on an up note, at least post was not too whiny or full of complaint! Ah, a bath and a good night's sleep - that would be really fabulous. Soon!

The Third Week

Thus far, all of my "third weeks" have been pretty good.

I consider week one starts with the chemo cocktail, week two begins the following Thursday with an infusion of Herceptin only, and week 3 begins with the second Herceptin only infusion. Then we start all over again.

So by about halfway through the second week I start to feel pretty well. Week 3 infusion comes and for that day and the next I feel pretty crappy again. Then I get relatively close to a "normal" feeling for a few days.

This feeling, however, is tempered by anxiety. I know what's coming. I know I don't like what is coming. I repeatedly tell myself "Get in this moment, Mel. Stay in THIS moment." That does help on Saturday. It helps a little less on Sunday and on Monday. The help it provides erodes as things that used to be easy become very tiring.

I have held a "Ladies' Luncheon" earlier in the spring for the previous 3 years. It is a girly wonderful time - we wear hats - of which I can provide some extras! I get down my mother's punch bowl. We use the good silver, nice dishes and celebrate our feminine selves with pleasant company, cute food (oh come on ladies - you know you love cute food), laughter and companionship. I was unable to do that this year and I really miss that experience.

Next year I will re-institute this event. Also next year - I need to start planning now - I will have to have a "I am Alive" celebration. With food that I like and can actually taste. Much of the time right now I may as well eat cardboard, styro-foam, or aluminum foil. Doesn't sound too appealing does it?

So some of the time I can actually taste food and that is great when I can. Sometimes, however, does not count!! Which leads me to today's lecture on ...

The Theory of Food vs The Reality of Food

"What sounds good for dinner?" Ah, here is a question. You see, any number of things may SOUND good for dinner, or lunch, or breakfast or just it sounds good.... That would fall under The Theory of Food. Let's use as an example a juicy, medium rare steak. Oh I am a carnivore - and happy to be one. If God wanted us to be vegetarians He would not have made beef so very tasty... Envision the steak - It looks delicious, it smells delicious, you know that it is tender and flavorful. Then you cut in to this steak, take a bite and taste - nothing. Or it tastes metallic. Or it just tastes strange - not like food that is spoiled, just off, not quite like anything that is good or that you would want to eat. There is where we come to Food Reality while on chemo.

And it can be anything - maybe some sweet delicious Ranier Cherries. You know they are fruity deliciousness. But are they? Maybe. It depends on when you eat them. And that could change at any time. And may be different in a couple of days.

I do enjoy when food tastes like food. I keep holding out for that. Thus - I won't eat my very favorite things right now. There just isn't much point. Say a beautiful Brie cheese with some lovely fruit.

Add to the mix the delightful (?) proposition of tasting it for the second time, if you catch my drift....

I want to like the foods I like when this is all over, so I won't risk ruining them by the results of extreme nausea...

Right now - in this 3rd week, food tastes pretty good, I am not nauseated unless I get over tired, and then it can pass pretty quickly if I get some rest, so I am enjoying food. I intend to continue to do so until we live again in the conflict of theory vs reality. It won't last forever. And there is always flour tortillas; one of the few foods that always (for ME, at least) tastes like what it is.....

The one in which I curse

On the way home from Herceptin infusion yesterday;
I was somewhere above myself, rolling along down a hill, tumbling towards the edge of a cliff but it's a hill that keeps going forever. People seek this "high" feeling, people pay big bucks, give up their dignity, their honor, their every valuable thing to get this "high" feeling. They will pay ANY price to get it.

Light bulb moment - people are, therefore, STUPID!!

I hate this feeling. I cannot begin to fully articulate how much I hate this feeling.

I haven't written for a while - I had been so dreading Chemo #3 as Chemo #2 was truly horrid, and I put off writing in the intention of coping with some of these things that arise from cancer and chemo.

The thing is, I am really feeling pretty angry.

Here is a handy check list of things that are making me mad:
* having cancer
* having a major surgical procedure that leaves me with part of my body just GONE.
* taking chemotherapy
* radiation treatment - oh yay, there's one to look forward to
* fatigue
* nausea - almost always
* insomnia
* anxiety - about treatment, about what's next, about anxiety...
* fighting this battle
* emotional exhaustion
* drug side effects
* re-centering my life schedule around treatment
* feeling weak - physically and emotionally
* feeling angry - yeah, that's ticking me off too!
* general irritability
* frustration with people who don't THINK.

I was thinking of having a t-shirt printed up with the following: It's Cancer, It is not contagious, Grow up

And, in fairness, it's not that any big thing, any obviously offensive behavior has been exhibited nor an offensive comment, has presented itself. It's the weird look because I am wearing a hat to cover my baldness - which is rather startling - as well as to HELLO, protect my scalp from the sun, followed by some supposedly innocuous comment. Here's a clue as to what an innocuous statement actually would be: "Oh that's a cute hat." See how it makes a positive and unoffensive statement? See how it is even nice - particularly when you are not staring at me like I have some dread contagion with which I threaten you?

I know this anger, this irritation, is worsened by fatigue, lack of sleep, and you know - an influx of deadly toxins being flushed into my system on a weekly basis. I just don't care right now. I feel this close to lashing out and reciprocating in kind. I feel like yanking my hat off and saying something like "Since you obviously want a real eyeful and don't care at all how you make someone feel, here you go. Now that you see it can you stop acting like an idiot? It's not contagious you know." And that's being really, really nice; sweet and kind.

Look, I believe in stupid. I've seen it all around me, I've been stupid and I know it's way too easy to fall into. I know I'll do stupid again, and I know YOU will do stupid too. It's part of the human condition.

The emotional upheaval is possibly the worst thing about cancer. Because it is endemic - it is connected to and intertwined with every single aspect of cancer. Every aspect of this disease is mental and emotional as well as physical and medical. I know it is dangerously easy to slip into a bad attitude, a negative outlook and I fight that, I fight that HARD. I'm tired of fighting it. I'm just tired and that makes it even easier to fall.

Keep me in your prayers, people.

A Whole New Ballgame

So I get up this morning and put on a headband and hat to go out to breakfast with the hubby...

My younger son came in from Jersey last night to do his Florida National Guard weekend. He flew in from Newark to Atlanta where he was postponed, cancelled, standby-ed for 2 flights and confirmed for one leaving Atlanta at 7:40 pm. He rented a car and drove in - and beat the flight....

His hair had gotten quite long and his plan originally - when he was going to get here at 2:40 in the afternoon - was to go to the barbershop and pay considerably less for a military cut than he would had to have paid in Princeton. Unfortunately, he got here late enough there were no barber shops open so we had to scissor it down and buzz it off. Fortunately, he has a nicely shaped head and looks quite handsome even with no hair...

I kept laughing while I was helping him which only made him ask how bad it was looking and did I mess it up. No, actually, it was NOT that it was messed up - it was just funny and during the transition I have to admit it looked rather like he had the mange!!! Upon completion, however, he looked fine.

I have told him for years now that he looks like my male clone counterpart. To which he always replies "I don't look a thing like you!" I tell you - he looks so much like me!

This morning after breakfast Ruben dropped me off at the Armory (where Troy had driven my car at 5:20 am) so I could pick up the car and do a few errands. I called my hairdresser and she was able to see me. I had her cut off all my remaining hair.

I did not go Kojak, more GI Jane. At first, before she started the clippers, I was a little weepy. So saying - once she started cutting I felt like I was really taking charge and doing something I had control over - I was getting rid of my hair on MY terms. I won't be lamenting the loss a clump at a time, I won't be lint roller-ing the pillow every morning to get rid of "fallout", I won't be grossed out by hair just being EVERYWHERE all the time.

I intend to take a picture of the two really really short haired of us - Troy and myself - when he gets back tomorrow.

All in all, I feel pretty good about this. I have scarves, turbans, hats, even a wig with which to go out and be seen in public. I have sunscreen which I will be applying daily - that skin hasn't seen the light of day since - oh wait, it has never seen the light of day - I had a head full of hair when I was born!!!

Of course, this is a bold enough move that a more dramatic eye makeup look was called for. I may have a GI "boy" hair cut, but I am still one of the girliest girls around.

I may even have to post a picture.

Cancer Sucks.

I've been actually feeling pretty well for the last few days. Oh, what a wonderful gift from God that is - feeling well. I know it's not the equal of the healthy feeling from before this started - but, oh, how wonderful it is to feel this well!!! Savor each breath you take and enjoy feeling well people!! It is COMPLETELY AWESOME!!

My hair is falling out. I get up in the morning and get the lint roller out to remove hair from my pillow. I'll comb my hair or run my hands through and get what would have been a couple of days worth of "fallout" every. single. time.

I look at myself in the mirror and oh I feel very old because I have thin, thin hair. It does not feel attractive in any way. I feel hair on me - on my neck, on my face - all the time. It is really just kind of gross.

I ordered some turbans and hats and such the other day that should be here by Friday. Yesterday I attended a "Look Good Feel Better" event. There they teach you makeup tricks to disguise some of the issues - like even losing your eyebrows and eyelashes, and wig care and such. They also told us that the American Cancer Society has a "Gift Closet" where you may be able to get all manner of things. We dropped by there today and I found a wig that I can live with.

So enough with the hemming and hawing around. When the items I ordered get here, I think I am going to go to my hairdresser. She had called me to check on me some short while ago and told me that when the time comes I can go to her she will take me back to the bathroom where we can be private and she will shave my head.

There is something that is quite humiliating about losing my hair. Something embarrassing, something demoralizing.

Well, there is something humiliating and demoralizing about this whole process anyway and yes, embarrassing.

Cancer sucks.

It sucks the very life's breath out of you if you let it defeat you.

This battle - it is tiring at best. I haven't written for a while because therapy though this is for me, I haven't wanted to look at how bad it is when it is bad. And it IS bad.

It scares me sometimes how bad it is. Oh, it scares me, indeed.

It scares me to think how much more I have to go. The first chemo round I was sick for a few days. This last time was my second round and I was sick for a full week and more. So I dread this next time - won't it get worse again? What about the time after, and after that? You follow my worry there.

It scares me because of how weak I felt this last time, how fatigued and vulnerable. Then add some indignity of going Kojak. Mmm. Bad.

It scares me how much I don't want anyone to ask me how I am. Because there are days when I could just scream out "I am horrible! I feel the worst ever and I know I am going to continue to feel like this for a while and then "better" is only that and not anything approaching "good" and I'm tired all the time and I know you don't want to hear this and I don't want to say this and I most of all don't want to FEEL this so please don't ask me if you don't want to hear the truth and I don't want to even tell you this and I don't want to think about it." But that would be rude and I am just fatigued from even thinking about it.

I don't mean to complain and I hope it doesn't seem like complaining, because I am simply trying to be honest and realistic here.

I'm also NOT telling people to not ask me how I am. I know that many people ask me because they really DO care, not just because it is the polite "form" to follow. If I hesitate when I answer - I am clamping my hand over my mouth inside so I don't respond inappropriately and because I am processing my answer to be somewhat honest and very not too much information for the hearer.

I'm scared because I have so far yet to go.

I'm scared of how my brain seems to go on miniature and sometimes permanent vacations.

I'm scared because I want to present a good face to the world at large and to my family in particular - a brave face, a positive and strong face. And sometimes I feel like a gentle breeze could blow me away because I feel so weak, and so vulnerable and so very tired.

And even so, I am surrounded by love and kindness and I know I am lifted in prayer - around the world.

I am a mighty warrior because God is with me. He is with me in small kindnesses extended to me by others, in meals people have made for me, in prayers, in cards sent me - some arriving just exactly when I most need them. He is with me when I can't sleep - which is far too often - and I reach for my rosary to pray a Divine Mercy Chaplet. He is with me when I lament the loss of morning coffee - tea can be comforting too, so for a while I'll drink tea. He is with me when I have my morning cup of tea and say my morning prayers. He is with me in something as innocuous as a Face Book friend sending me a greeting.

All in all, I'll take it. I'll take this hard road, because I know there's a better one up ahead.

Let's Go

Do you have this to face? Is something looming in front of you that you KNOW you really must do, but, oh dear God, you do not WANT to do?

Jump in and do it.
Do it NOW.
Do NOT hesitate another minute.

I think of one friend in particular, whom I shall not name, who I want to say this to. Sooner begun, sooner done, my sweet friend.

No, this is not fun. In fact it is VERY not fun. But I have just completed the 2nd round of chemo - that's one third of the way through with that! Yes, I have way more of this trip in front of me than behind me.

But I have some of this trip behind me. I knew I could not analyze this situation too much or I would develop analysis paralysis. I RAN in abject terror towards that which frightened me so I could conquer it. I refused to run in abject terror away from it - lest it should conquer me!

I tire easily. I don't necessarily feel very well at any given moment. But you know what? I am fighting. I am standing facing my fear, and I am going to kick butt and take names in this battle. Including I will call on those who attempt to "help" without knowing what they are talking about to stop talking about that which they know nothing.

I have found some amazing gifts here too. Gifts that I didn't fully realize I had already, as well as the gifts of kindness from others.

You will find these gifts too. And you will be the warrior princess to put Zena (or Ziva) to shame!!

This post really is directed, targeted, aimed at my sweet friend. I don't see enough of her and I love her dearly. Fight, my sweet girl!. Fight with me by your side. Yes, the road is going to be difficult. Is it easy now? I think not!!! And this road, this road of intentional battle leads to success. Oh I will be the victor here. I want you to be the victor as well!

Okay, so I felt pretty crummy for a couple of days. I can and do realize that I am feeling a bit better at a time. There are tricks to help you through the worst and you know, I have been in far worse situations than this.

My faith, which was pretty good, I think, has been further strengthened. It has been strengthened by testing, but so? Isn't that how we strengthen any muscle we have?? Of course it is!

I am surrounded by love, uplifted by prayer, cushioned in God's love and protection. How could I not want this for you too, my sweet friend?

I walked your path for a while - as short a while as possible!! Oh, how it frightened me. It was a drawing out of this journey that I simply could not deal with. It was far too uncertain. I do know, that this road I chose COULD fail me too. I know that. But I have a far better chance on it than the other.

Do not fear to face these demons, for demons they are. Stand and face them, face them down. They appear frightening as long as we let them. We have the power and the strength. They are nothing.

And you, are something special.