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.

The Hole in the Metaphysical Universe

It is difficult to come to terms with a MAJOR change in your body. That is what this is; a MAJOR change in my body.

As you grow and age, your body changes over time. Gradually it changes from the body of a child to the body of a young woman. When you become pregnant, again, your body changes are gradual. Yes, I know, it sometimes FEELS as if you went from a 16-inch Scarlett O'Hara waist to being bigger than the entire planet - but that is FEELINGS. Don't trust them so much - they can mislead you.

So having gone through many changes over my lifetime, and fully understanding that none of them was instant change, but gradual, I come to this point in my life where I DID actually have a rapid, major change that for all intents and purposes was, indeed, instant. To me because I was unconscious, to my immediate supporters and family members because I was in the operating room. Three supporters - my husband, one of my sons and my daughter saw me prior to and then post surgery. For my other family members and friends who have seen me it also has been "instant"...

When you consider that I have had to deal with a profoundly and abundantly feminine body since I was 13 years old that means that for 40 PLUS years - I did say YEARS - I have had the feeling that surely every female on the planet has - the desire to say "HEY!! I'm about a foot higher than where you are looking and they are NOT going to talk to you!"

There is a certain relief in no longer having to deal with that issue that underlies all of my feelings about this "new" body. Okay, there is one for the plus column!

I know that this is a transitional phase for me, physically as well as emotionally and psychologically. It is just not always possible to wrap your mind around that.

The best description I can come up with is - I am the universe. Each of us is "the universe" and so from MY perspective I am the universe. I hold all of my feelings, all of my thoughts, I am the connection to every other thing in my world, every thing that is reality comes into life and reality when I encounter it and interact with it, otherwise it is merely concept. Every one that I love is in my heart and alive because I love and am alive. I hope you follow that to understand my perspective. I am not saying I am God, I am saying God is in me and my charge is to connect and bring to life God in everything and everyone. That is the charge EACH of us has - to be who God designed and created us to be. We are solid and physical and very "real" and yet at the same time we are nebulous, ether, intangible - vapor on the wind, and both vapor and the wind all at the same time. We can choose to be the light we are intended to be or we can be darkness.

This physical reality in which I now exist - my metaphysical universe - has this huge hole in it now. This place of emptiness where once there was something. A hole has been torn in the presence of my existing that will always be there - even when it isn't there any more. A place in the starfield of what I am where there are no stars, no light, no anything but there used to be. If you could reach out and touch this place in the universe you couldn't touch it, it is a cessation of being. And it is not.

I will find a balance here, I know. There is healing going on physically and I am working on the rest of it... There isn't a "right" way to do this, there is only doing this, walking towards where I need to be and finding so many blessings along the way.

I have been showered with many kindnesses and support. Many friends have made meals for us and I know some really good cooks!! I have been prayed for and I do value and I feel the support of those prayers - from around the world!! I am flooded by love from so many - from people I don't even know - sweet Elisa's family in Italy prays for me and sends me kind messages - grazie, cara, mille grazie. I have been blessed with a husband who is entirely supportive and patient and kind and empathetic for me. My children, my sisters and extended family have been wonderful.

I am aware of my blessings and so grateful for them. It's a day above ground and that's a good day.

My Dishwasher May Be Haunted

I just had a few days visit from my youngest sister (aka my little baby sister) and her husband and my nephew. They had been going to stay at a hotel nearby because they didn't want to put too much on me. I had told her to stay with us and we left it up in the air for a couple of weeks. I finally told her - Linda, I want you HERE. If I get tired - I'll excuse myself and rest. I just want you here at the house. I HAVE the room.

So she allowed they would try it and if they felt they were too much for me they would go to a hotel. I won!!

Well, that is a good thing!. I know they had been worried about me and I had worried about how worried they were etc.

It was SOO good to have them here. My sweet husband is supportive and wonderful and he happens to be a man (Hallelujah!) and I sometimes need a girly girl kind of person around me, being extremely girly of a girl myself. I needed her here for a visit and I love my brother-in-law and nephew as well; it was all good.

I was able to share with her some of my feelings and fears about this new body and the limitations it puts on me; the way it damages my sense of my feminine self; how painful it is to look and see this very different physical aspect; the difficulty in holding on to the idea of "this is only a transition" even though I mentally know that it is, etc., etc., etc.

We laughed our heads off - but who needs their head attached? - and had a good time. She was helpful and funny and kind and watchful - she could tell when I did, indeed, over do and told me I was looking green around the gills. At the same time, she understood that sometimes you have an inner NEED to overdo it a bit just because you CAN!

I set my dishwasher to run at like 1:00 AM because - no one is up and about, it inconveniences no one, and when I get up I can unload the dishwasher and put everything in its proper place. There is a certain pleasure in doing that, valuing your useful possessions and caring for them.

My house is only a little over 5 years old. Linda (little baby sister) has more recently done a kitchen renovation and so her much older home has a newer kitchen than mine.

Mind you I LOVE having a dishwasher (having BEEN the dishwasher for a number of years) and I like my dishwasher just fine. So saying - I have, indeed, discovered some design flaws in the model I have. It has its "buttons" on the front. These are not actual raised buttons, they are flat touch sensors. Invariably, someone will put something in the dishwasher, shut the door and by the act of shutting the door, inadvertently push a button that you didn't mean to touch. However, you CAN program the thing to do any number of different functions, my own favorite being the whole run it at 1 o'clock in the morning when you are asleep and don't have to hear it.
Linda's newer model - which is blessedly quieter than mine - has the same option, however, her "buttons" are at the top of the door where you don't touch them inadvertently AND hers will retain its programming if you decide any time after you have programmed it to add something to the contents. Mine - no.

So every night I would program my dishwasher and then later have to program it again because something had to be added. Mind you, this includes myself adding something - but I am the one who is aware of its little quirks. So in the morning I'd get up - and having heard it make some noise in the night that indicated it had done SOMETHING - to find it hadn't run after all! What? I ascribe it to ghosts. This actually was pretty funny to me. The best laid plans of homemakers everywhere.

Advantage? Well, even though we would unload the dishwasher together, which enhances the experience, it gave us a little extra time to just go ahead and sit out on the porch (with blankets - it was CHILLY!! 49ish degrees!) and chat and watch the morning come up. The peace of my back porch is wonderful. I look out over our forest - the beauty of trees stretching as far as you can see, the birds chirping, the hummingbird battles - so lovely, so relaxing, so calming.

We had a great visit, a loving visit, a calming visit. And maybe the ghosts of the dishwasher helped....

blaaah

Well, I have pretty much weathered the first chemo... Thursday was when I had it (April 7th) and it itself was not too bad.
The last really good sleep I had was the 90 minute nap that afternoon.
So Saturday was, yes - oh this may be TMI - regurgitation day. It seemed like my stomach just stopped working.
Pushing liquids, trying to get some food down, including greek yogurt which is chock full of bacteria that your stomach needs to break down food. And bland easy food - you know the BRAT diet - Bananas, Rice, Applesauce, Toast.

I have had food poisoning worse than that - oh way worse!! Sunday felt more like low level stomach flu. I look forward to not having to set the alarm to make sure I take one of the dread meds every 6 hours - only one more round of pills for this time!

Oh I must tell you - I thought this was actually funny. Mind you, I do have a bit of a warped sense of humor, but you know.... that's me.

I had to go back in to the Dr.'s office Friday for a post chemo injection. When the lovely Catherine (chemo nurse and lovely soul!) told me it was an injection in my stomach I was almost ready to freak!! I can look at a needle once it is IN me and that doesn't bother me. I can NOT stand to see the needle go in ANYWHERE on ANYTHING - seriously, like even a 'practice injection in an orange' - IN - no big deal, going in AAAAAAAHHHH!!!!! Needless to say, I never under any circumstances watch the needle go in....

So, I'm thinking of horror stories I have heard about rabies injections and how they are super painful and on and on.

Catherine tells me in her calm and soothing way that I'll feel a little swab, a little stick, a little pain. I feel the swab, I feel pressure and she says, "There , all done."

What??? I didn't feel a thing! What a hoot! Here I am ready to freak myself out for absolutely no reason whatsoever....

I know it is possible it will get worse. It is also possible is will not get worse. I know this is going to be an extended and wearying process. I ask you to keep me in your prayers.

Dean, my dear friend - thank you for your letters. I promise I will be getting back into action. I have thank you notes to write, I have lots of things to do - it's just that I seem to have hit an interruption in my energy flow that keeps me inactive and not able to plug back into my energy to take actual action.

Short post - One Down..

I had my first round of chemo today. Dr. Rassam is great and his chemo nurse Catherine is awesome!

I had had a very positive feeling there on my initial visit and felt strongly that this is a place where I can have healing and peace, gain my strength and claim my health anew.

It hurt this time - probably more than it ever will again - because my port is so newly placed - okay I have decided it is as alien invasion type thing so it will henceforth be called implanted.... until we can eject the aliens and remove it!!

Catherine explains each step and what each drug is prior to putting it in. LOADS of anti-nausea IV and those can make you drowsy. There is actually a lot of sleeping that goes on in the infusion room. I may be one of those who refuse to succumb, though. Well, somebody has to be on the alert.

I came home and took a 90 minute solid sleep nap and I just want to let my loved ones know I am okay.

The 3 Simple Rules

It is a beautiful day here today. It is supposed to get up to 83 degrees and then tomorrow we are expected to have thunder boomers - and lots of rain!
Tomorrow I have the MUGA test - what a name! It means Multiple Gate Acquisition - it tests the functionality of my heart. Is it pumping adequately.

Chemo starts Thursday. I am a little anxious about it. The CT scan indicated I have no "random" cancer elsewhere in my body - that is good. The bone scan indicated I have good strong, healthy bones - THAT is good. The MUGA, or heart scan WILL ( I insist) indicate that my heart is strong and healthy and pumping most fabulously! That will be good.

See, chemo is very, very bad for you. It is what will kill the cancer and greatly increase the likelihood I will stay alive and healthy, but it is very, very bad for you.

I am not going into all of the details here, gentle reader, as you will likely be bored and /or forget anyway.

I will tell you that my cancer is at least stage 3 - oh that's good "at least!!" - highly aggressive, and that I am firmly on the carousel of cancer treatment.

Yeah, yeah, I know - chemo hasn't started yet. Nonetheless I am firmly on the carousel, the attendants just haven't started the real ride yet....
I made cookies yesterday because I remembered how tasty they were when I made them in early January (accidentally discovering that Oatmeal Chocolate Chip Cookies are WAY better than Toll House Chocolate Chip Cookies!) and I figured I might want to enjoy that before I can't taste things very well!!

I have done my research and that is one of the many exciting potential - indeed, probable - side effects I will get while on this carnival ride...

I guess the real point of this post is to advise people who may (or may not) be interested about the suggested guidelines for how to talk to a cancer patient. These may be updated as I go through this ride.
1. Keep it simple, sincere, and in YOUR personal, actual experienced knowledge base. For example "I'm sorry to hear your news. If there is something I can do, please let me know, I will keep you in my prayers."
which leads directly to Rule 2
2. Do not under any circumstance feel free to share from what is NOT in YOUR personal, actual experienced knowledge base. For example "Oh, my neighbor/cousin/sister/some stranger I randomly met had exactly what you have and she/he (option1) never had a moment's problem with chemo! (option2) threw her guts up every minute of the day for 59 years, lost all her hair, was in acute agony for 90 years" etc., etc., etc. You get my drift.
3. It is all about me right now. This is for my survival and best interest.

Why do I post these 3 simple rules?
Rule 1 because this is ALWAYS the best tack to take. If I just hear a kind word of support, prayer offered, help offered - believe it or not that DOES help.
Rule 2 because - PEOPLE!!! I have researched my situation. I have spoken to my doctors. My husband and I are aware of what I can expect. You were not there. I have NOT told you everything - nor will I tell you everything. I am NOT stupid. This is momentous, and huge, and frightening what I face and YOU DO NOT KNOW WHAT IS ENTAILED HEREIN.
GOODY for whoever you knew who had zero side effects. That is not me. And oh my goodness! Why would anyone in their right mind want to tell me worst case scenarios of something that they don't really know anything about????

I can eat an elephant one bite at a time. Do not tell me about the existence of the elephant or how big it is. BITE YOUR TONGUE!!! I assure you, I DO know what is ahead of me.

Rule 3 - It is all about me right now - I cannot help you feel better about your neighbor, friend, whoever. My job right now is 100% to take care of me. I cannot afford to care one whit about any of your problems in dealing with my situation. Sorry - but that is fact.

I am not, by nature, a selfish person and surely you are aware that women as a whole are socialized to be more concerned with others and to put ourselves at the bottom of the list. I am now #1. Frankly, I may stay up there at the top of my list. (It really is more like number 3 1/2 behind God, my husband, my sons.....)
It is NOT helpful for you to share how badly you feel about whatever. I cannot help you right now. It is NOT helpful to hear the horror stories OR the breezed through with flying colors stories. Leave them at the entrance BEFORE you come in to my circle.

What if I have zero side effects? YAY YAY YAY YAY YAY YAY!!!!!
What if I have every side effect known to womankind? Well fooey.
Surely somewhere in between is more likely.
I have noticed that people who have actually experienced cancer and chemo are supportive and NOT forthcoming with information unless asked specifically. They know. The wrong information can be crippling, debilitating, depressing. NOT HELPFUL.
They know - a kind word of support and offer of help is all it takes. It is encouraging. It is a battle that each individual has to fight on their own terms. Why on earth would you want to take away the weapons I must have in order to fight my battle?
I'm telling you now, you may be labeled a platypus (because a platypus just doesn't fit in anywhere) and I may have to ban you from my circle. I have already advised people who are in my inner circle that If I use code word platypus that means "Get this person away from me!! NOW!!!"
I don't mean this unkindly, I truly do not. I must be kind to Melanie first right now. I am going to assume that what ever you say to me your intention is one of support, love, encouragement, kindness. I am, however, going to claim the right of the warrior I must be to eject you as if you were an enemy when it endangers my success or attitude of health and peace and calm.
It is imperative that I guard my peace. It is imperative that I win this battle. I release you in love if you cannot play by my rules.
This is MY "game" and MY "rules" and MY battle.
The fight is on.