Short Red Hair and Painted Face

My hair is growing back. Very short; I should say very, very, very short. Not the spikey red hair that I used to have but thanks to Richard (my wonderful hairdresser) it is red again. It is a bold step on my part to wear it like this. I get mixed reviews - "sophisticated", "i want to wear my hair like that", "at least its growing back", "it must be easy". So the jury is out. But by the time I get the final verdict it will be longer (I hope) or I'll be having more chemotherapy and probably lose it again (I hope not). But should I even care what others think!
So now with this super-dooper short red hair that exposes me so shamelessly, I add even more make-up to my face. Why do I do this? I think I keep searching for that beauty that is supposed to be within me. People tell me it's there but I keep adding paint to the outside in the hope that it will make it through to the inside. I paint my eyes - "the eyes are the windows to the soul". I know I heard that quote somewhere. So I invite my friends to be attracted to the outside but peer through my eyes to my soul.
I paint my lips so the world can see a smile. I am physically feeling better so I have been smiling more. The lipstick actually looks better when I smile. The connection between the physical and emotional self is just so close.
I wonder why I worry so much about the way I present myself to the world. Spikey red hair, red lipstick, painted eyelids are all part of the what the world sees. Do strangers even look? Do friends even notice? Does anyone see the sadness or the sickness that lies deep inside me? Does it really matter?
My friends that know me well will look through my eyes and underneath my smile. On this day the smile is real and my eyes are truly smiling - although my hair may not be as spikey as I want, my lipstick may need to be reapplied and my painted eyes may be smudged. I am among friends who have seen my soul.

I Smiled Today

I smiled tonight even when I looked in the mirror. It is something that has not happened that often. What I see is ugly, cancer, sickness and sadness. But I began to think of all that love me and care about me - do they care that I have no hair; do they care that the steroids I take for nausea added a few pounds; do they care that I have memory lapses? Chemotherapy is an awful thing that causes awful discomfort. But I'm on a break now but I live with the after effects of "insane" treatments.
But I looked in the mirror tonight and caught a glimpse of a smile. I was trying on the dress I thought I might wear for my night at the Langham. I thought of my friends that would be there - I thought of my family that are all for the idea of this get together - I thought of my friend Maria who made a small suggestion and ended up being the main organizer - I thought of the individual women that will be with me and special times with each of them - I thought of Sunday Brunch at the Langham with not only the women but other family members and friends - Wow! I thought of how amazing my life is with all these special people. Then I applied a little more red lipstick, looked over my shoulder, into the mirror and caught a glimpse of a smile as I walked away.

Get Me That Lipstick

I've worked half of my forty hour week. It makes me feel alive, purposeful and useful. I get to forget about myself and think of the struggles and sometimes triumphs of others. But then I get into my car and all the repressed thoughts of the day come flying out of my brain and are now splattered all over the inside of my windshield. The "higher" I feel during the day the harder I crash and the bigger the splatter. (Yuck! That is an awful image. ) But as I tell many of my friends - I think in pictures and the more graphic the more I can understand.
So I'm going to keep busy and more busy. Then I'll crash and splatter, pick myself up again, dust myself off, hold myself together and all the while thinking how much I need that red lipstick again to paint that smile on my face. I so desparately want to look happy when I walk into my house.
Even days off from work give no rest. I'm off this Thursday so my plan for my day off is Provider Meeeting in the morning (even though I am off from work), followed by personal training session then I have a few hours without any plan. I am in a panic-alone with my thoughts just brings sadness - what can I do - can I read without drifting - how about going back to sleep, taking a nap - shopping, no I don't want to spend money, then I'll worry about money which is not even a major current concern - call someone for lunch, tried that but no one could make it - I need to have something to fill my time - I can't stop! Relax, and just breathe. Now aren't you tired and anxious after reading that. If not, read it again without stopping for punctuation signs. That is the feeling I get everytime I have empty time on my hands. So, back to my day. After those empty few hours I meet the school bus, take my son to an appointment, go to an open house at a friend's jewelry store, and yes, at 8:30 PM I have a vision field test and a nerve fiber test scheduled with my opthalmologist. Then in my car to face the splattering until I get home and take my ativan to fall off to sleep, praying for no metastisis, no pain and no tumor growth. I pray for others that are sick...I'm off to sleep. Thank you Ativan.
Now the morning comes. Same routine with the same words - Mario, what do you want for breakfast, Mario, do you want to buy lunch or do I need to make it, Mario, here are your clothes, Mario, did you brush your teeth, Mario, make sure you put your hat on. I love that boy (I wrote "little" boy but if he reads this someday I don't want him to think I thought he was little. I want him to know that he has been nothing but a very brave boy), he gives me a reason to keep fighting not only the cancer but this overwhelming sadness and anxiety that it brings with it. Now Mario is on his way to the bus and again I say the words I say many times as I am getting ready to go to work - Where the #$^% is that red lipstick!!!

The Irony of It All

The reality has set in and I, Rosanne Ameno, have a terminal disease. I have Stage IV colon cancer that has metastisized in a big way to my liver. It is inoperable and has no cure!!!!!!!!!!!!!!!!!!!!!! There, I said it and now I lie in bed, wanting to sleep but the only way to fall asleep is to take my ativan. I have lots on my mind.
The dependence on medication that has been created is making me scared. What am I going to do? I'm not sick - I'm just a little "unwell". (Nick, I told you this would get that word in my blog) Take my medicine like a good little patient. I fight it. I make jokes about it. The flying pigs (usually morphine induced) are even getting boring. Today was my visit to the oncopsychiatrist - his position is to deal with patients with terminal cancer and help them cope with the feelings that come along with it. So more medicine. Again, good patient and take medication or don't even bother picking up the prescription.
I need to pull myself out of this funk that I am in. (I think I said the same thing a blog or two ago but this time a mean it.) So I look to my left and lying there is Mario my bonous boy, and next to him my Michael, the man I love and married over 25 yars ago. My beautiful Michelle is in Aspen for a few days, my handsome Jay went to UNH to spend the night with some friends. I love them all so much but believe it or not my family is one of the reasons I am in this space. I don't blame them - these are my slanted thoughts. "Isn't it ironic?" We are a family. I can't help but see their life going on without me. I see them as beautiful together. But I am old and ugly and just looking in . Damn it!!!! I helped create this family but I feel so dissociated from them, just watching from afar.
So I'll work towards integration because I am still here. I live and breathe and I am getting ready to go round 3 with this terrible disease. I'll just keep believing that I will live a long time. I'm not sick, just a little unwell. I will fight forever, right through old age. Maybe I should delete my first paragraph. Isn't it ironic?
Michelle, Jay, Mario, and Michael - if you are reading this after I am gone, just remember that I love you all very much and really wish I could grow old with you.

("Unwell" - taken from Match-Box 20)
("Isn't It Ironic" - taken from Alanis Morrisette)

Good night everyone. Tomorrow is another day. Rosanne

LIFE vs. life

I feel that blogging my thoughts not only gives me a way to express myself but has the potential to become a living memory of me. I am sorry to express so much sadness in most of these posts but I can feel the "life" that I was given is slowly slipping by. I have the word "life" in quotes because I want the personal meaning to be exposed. By "life" I mean passion, spunk, pizzazz, personality. I guess what I mean is LIFE.
Day after day has been going by. My brain is full but my body cannot feel what my brain is telling it to. My body is so broken. It hursts to eat but it hurts to have an empty stomach. I whimper beyond control. The neuropathy is bad. My chemoport is so very ucomfortable. I cry when I see my children and husband. I cry when people are nice to me. I have such love for all those that support me. I've learned to make sure that I tell friends and family that I love them. I'm planning a party for myself. I want people to believe that I can still enjoy myself like the rest of them. Sometimes I wonder "who am I fooling." But in the same thought I realize I need to smile and laugh for there is no life without it.
So to thread the thoughts of this blog together - I feel the "life" in me slipping away. Ah, that sounds a little better than "life" slipping away. And as I wrote the words of the previous paragraph I realized that even though I feel it going I still hold on to it. The irony in my emotions keep me intrigued. I wonder what I am going to feel next. This I like.
But the physical pain and discomfort of all this is what is getting to me now. I thought I could handle it but I am learning quickly that I can handle just about any feeling that comes up. But to be in the midst of physical pain and trying to deal with it has got me stumped. The thought about numbing it with thoughts and feelings of flying pigs sounds good but then I lose the "life" that I so desparetely need.

Sadder and Sadder

I started this post talking about my cancer but then I erased what I wrote. But I kept the title. I feel sadder and sadder re: the results of this election. I will say no more but I feel that the results were based on anger, and self righteousness vs. the needs of all. And I will ask just one question for anyone who reads this to ponder - Where are the values that were instilled upon us by many of us who have immigrant grandparents? I pray that there are not as many as I expect there to be whose life will challenged in a negative way due to this election. For all those that read this and don't understand - I just need to say that rather than sucumbing to pressures of many friends and family I voted for what I thought was right!!!!!
Don't worry, I'll be back to blogging my laments of cancer and chemotherapy very soon! I need to wallow in this sorrow a little longer.

Sick of Feeling Sick

I'm going to spend this little block of time in complaint mode!!! Just skip this blog if it will bother you. I'm sick of being sick, I'm tired of being tired, I'm angry that I'm feeling angry, and I'm sad about how sad I am. There, I said all my complaints in very few words.
But if you chose to skip this passage then you are missing the best part. THANK YOU for listening. It is a very hard place for my friends and family to be in. And those that I trust have the "pleasure" of listening to me the most. I have been wondering out loud to a few members of my society of friends (Not the Quakers - I keep them for my breakfast ) as to whether I would rather die now than keep up this gruesome fight. There is something very peaceful when I think of dying and I am thankful for my belief in a very peaceful afterlife. But just giving up makes me a wimp and at this time in my life I don't want others to think of me like that. Ever read obituaries from those that died of cancer . They always stress the "brave fight." What if mine reads "She was quite wimpy in her battle..." My family and friends expect the fight to the finish, it's not over until the fat lady sings, it ain't over until it's over. Let me just ask one question - What if I just can't do it anymore??? Here come the tears, oh, oh they want stop, please dear Jesus, just help me to stop crying. I cannot hold these tears back from those that can understand.
So another way to look at things - taken last evening as advice from a sincere friend -(paraphrasing his ideas) I'm going to fight the depression I feel because once I get hold of the depression I might be in a better position to fight the cancer. So I'll continue to cry until my eyeballs stream from my brain and once the tears have flooded my existence I will pick myself up, dry myself off and get back into the ring with a different sparring partner. And once I defeat this emotional bastard that plagues my soul I will be ready to fight the real enemy that plagues my body.

Blabbering Emotions

Emotions run wild. Up the stream, down the mountain, under the tunnel, over the bridge, across the street, in the sewer pipes, over the rainbow...Ever think one way and feel another all at the same time? Did you ever start a fight only to get a hug? How about feeling like crap but dressed to the nines. Ever feel you are so happy you can touch the heavans or so low you can feel the fires of hell?
I've dealth with these conflincting emotions - happy but angry, hopeless but hopeful, spacey yet so grounded, so dead but so alive.
I drive myself crazy trying to make sense of them. I stay up late, I need to use ativan, I try to talk it out but most of the time nothing comes out of it because how do you talk about how you are feeling when you really don't know? Cancer Sucks! It leaves you totaly preoccupied. A simple question like how you are doing becomes a blabbering disertation and in the end you said nothing more than "OK". I'm saying good night because I'm beginning to blabber right now!

Return from the Other Side

I return back to work tomorrow. I really like my "Nurse Practitioner" part of my life vs. the "patient" part of my life. However, I'm very sad to say I will be a cancer patient until the day that I die. But you know what - I can say the same thing about being a Nurse Practitioner. But tomorrow feels like another return from being a patient. So watch out Lynn Community Health Center - I'm back, I'm strong and for the next eight weeks I hope to be out of my patient role!!!!!!!!!! Good Night now, need some sleep to be ready for my return debut....

In Memory of Auntie Fanny

Auntie Fanny passed away a few days ago. Her wake is over, funeral Mass is said, her body is laid to rest at Holy Cross Cemetary in Malden, Massachusetts and her soul is up in heaven. Everything was done in eloquent but simple style which is nothing but a copy of the way she lived. Auntie became my aunt through marraige but she was my aunt in the purest sense of the word. She was very frugal as most people are that have grown up during the Great Depression, but generous to a fault. She was generous with her love, generous with her prayers, generous with her food, generous with her time and generous with any money that she had. She loved her family unconditionally. When she heard I had cancer this stoic woman cried. At the birth of all three children of my children, as each one came along she took pride in being the oldest and that new born baby having a chance to be the youngest. The more I write the more I cry. Some of the tears are sad tears because I will not see her on this earth again, some of them are tears of joy because I had the privilege of being her niece, and some of them are tears just because my words cannot describe my sense of loss.

I'm Back!!!!!!!

Hey, I'm here, I'm home, I'm out of the hospital. I'm alive, I'm going to be off chemo for at least three months. Let me say one thing. I deserve this vacation. I worked very hard, submitted my body to physical toture, and shed many tears for this vacation. I want more...I dream of hearing the words "you are cancer free" or "you are in remission." These words are never meant for me. My excitement comes from "your tumors have shrunk" and now I get a hiatus. 12 weeks or three months - same thing but which one sounds longer because that is what I am hanging on to.
Just spent last 5 days in Brigham and Women's Hospital with bowels either stopped up or emtying like a faucet. And the pain of it all! But not only abdominal pain but flank pain which radiated right into my groin - and guess what that was - How about a kidney stone trying to pass as my bowels couldn't make any sense of what they needed to do. Wow, a double whammy!! When it rains it poors!!! My brain was filled with flying pigs in order to stop the pain.
So narcotics stop the pain but cause my bowel to constipate. So as a good patient that all nurse practitioners should be I began taking colace and eating a normal diet. OhOh here comes the poo-poo train. Back to Lomotil and very quickly and without warning this poo-poo train got stuck in the tunnel. Time for the colace and the green leafy diet. The poo-poo train is now on a runaway train so back to lomotil and white foods. By whites food I mean foods that are white in color. White bread, white rice, white potatoes. You get this colorless picture?
So here I sit. I was out for most of the day but unfortunately I had to scope out the location of the nearest toilet and had a small bottle of spray cologne in my bag just in case. Well it worked all right! Again here I sit and sad to say the poo-poo train continues on the runaway track and almost caused me to have to hide my face in shame.
So on goes the battle!! I keep getting knocked over and each time I express the famous words of Jack Nicholson in "The Shining" - "I'm back." But each time I scream those words my voice feels deeper inside my chest and I feel that it is much harder to climb up through the bowels of hell.

Hopefully I be more positive on my next blog. Love, Rosanne
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