A Good Day

I have to say that it is pretty funny how much energy you can muster when there is something you really want to do. "Not feeling very well" is pretty much my status quo. But somehow or other I have been able to laugh, socialize, go to Church, shop, cook, clean, wear my high heels, put on my red lipstick, and work - maybe not as much as I like but never the less, I still have these parts of my life. It was a good day yesterday because I did every one of these things (except work).

Don't get me wrong. I have periods of sadness, pain, and weakness. (If you a readers of this blog I have no need to tell you about it.) I have the need to feel, these feelings. But I can understand the importance of taking advantage of the days that feel normal; the days that are status quo. Those are the days to push, to forge on ahead, to live life, to be hopeful and to be thankful.

So today is one of those days and I am compelled to write about it. Just a normal day and I rejoice! Thinking of my last scan and hearing the word "calcifications" for the first time and I rejoice! Attending Sunday Mass and I rejoice! Having dinner with my family and I rejoice! Fresh, clean sheets on the bed and I rejoice! Looking at my husband and children's pictures and I rejoice. Shopping and finding a bargain and I rejoice! Thinking about my career in healthcare and I rejoice! There are so many things in my life that are good. Not just good, but great. Today I will continue to notice the good things and put the scary, bad things aside.

So today is one of those days I feel alive. I feel like I will beat this cancer. I realize that I have already beaten the odds. I will continue to rejoice the good things in my life. And today I will also pray for those that see nothing but darkness in their lives. Everyone deserves a little light and in the midst of bad things you may have to dig for that light, or even wait for that light. And when it flickers just push to make it shine. Have a great day everyone. I've climbed through the darkness yet another time. I've made status quo feel wonderful!

The Ghost Came for a Visit

I am feeling very sad and very guilty today. I am thinking about my son Mario's needs. OK, he is almost 12 but he still has a need to be entertained. It is school vacation week and I just can't seem to fill that need in him. I have been making attempts but they seem to be very feeble in comparison to the personal dimensions of his need. He has said to me on many occasions that he wishes I was like the old mom. He remembers me being like the energizer bunny - very happy memories. I hear his engine rev even when he is tired. Just last night he took Mario snowtubing with the Nazarro Center. Over the weekend he just occupied his time, being able to get him to where he needed to go, picking him up - reallt being such a great father. Then here I am - "Sorry Mario, I have treatment." I go to bed at night thinking I'll have a stronger day tomorrow - but it is usually wishful thinking and I feel just awful. But I keep on trying and that's all I can do. ALL I CAN DO - those words hang heavily in my head: just as the pins and needle feelings hang heavily on my fingers and toes, feelings of nausea hang heavily in my belly, and feelings of low self-worth hang in my thoughts.
The ghost of me appears again. Everybody snow-tubing with Mario including Michael, Carl, Sofia, Ernie, Maria, Jenna, Evan, TJ, and Nick. All having a good time, enjoying eachother's company, laughing with the kids, adults cold, children just playing in the cold. There's all the actions, there's all the feelings that I want to be a part. And where's the boy's mother???? Last night I was the ghost in the trees.
So today, Mario and I made Candy Apples. We were working on this project at 8AM. I was physically and emotionally present and it felt good. But a few hours later I hear him on the phone telling Alan, a good friend of the family who lives in our neighborhood, "my mom really can't do anything much with me today. She doesn't feel good and she is tired. Can I come hang with you?" We were in the room together when he made this call, though tried hard to muffle the conversation, knowing it would inflict some pain if I heard him talking out loud. What a considerate boy!
So I spend the afternoon feeling sad and guilty. I try so hard to be the normal mom. I try so hard to offer entertainment to my beautiful Mario. I think that I failed today on both counts. But now I spy the candy apples, I spy the core of the one he has already eaten. Mario I love you, it is not fair that you have a mother who is sick but the reality is that I love you as much as I could even if I wasn't sick. and even when I am not there my thoughts will always be and even when I leave this world my ghost will never stop enjoying your moments. And sometimes the ghosts seem to come out early, just to see how it feels.

Happy Week

I am only going to say good and positive things on this post. Having limited treatment 2 weeks ago and no treatment this past weekend really gave me a chance to feel like I was on a mini-vacation. Very mini, but I know how to pack a lot into the times I am feeling good. With chemo every week those times have been limited but I'm not going to complain because I had such a jam-packed two weeks. It was such a respite from a pretty sickly existence. Met with past and presents firends. And I mean past - there were friends from Franciscan Children's Hospital where I held a job 20 years ago. Friends from before Michael and I were married. Present day friends mixed with friends from the past. Past friends that have been with me throughout the many years of my life. Family, mixed with firends. I wish I could list all the names but I am afraid that I will miss someone. I would never want to offend anyone. But you all know who you are. There were many friends that I did not get to so I am saving that for my next weekend off. I know who you all are.
So tomorrow I work, as well as the next and the next. They will be all good days. Then Friday comes and I will get hammered with the poisons that keep me alive. But I won't digress (or regress). So I give myself a big pat on the back for not letting a spare minute of my "well" time go by without filling it in a positive way. So as I sit in my chemo chair on Friday, wearing high heels and sporting my lipstick I will run my mind over the past 10 days that have brought me nothing but joy. And then I will plan for the next time I get so much as a week's break. It will keep me happy.
Perspectives differ for me now than they did when I first started treatment. Before it would be "one week, only one week" now "thank you for that one "long" week." I try to be grateful for everything. I am grateful for everyone that takes the time to read this blog. For many reasons I write and for many reasons people read. I continue to be grateful for my red lipstick. Both make my smile just that much more prominent.
One last thing Happy Valentines Day to all my fans - I've taken your hearts, wove them into a blanket and am feeling myself wrapped up in them all. Just another thing to broaden the smile on my face.

Another Blog Entry

My last post was over a month ago. My mind has been racing and when this happens, putting thoughts down in words in any coherent fashion just gets so complicated. But here is my attempt.

- My mind can't help thinkng about two friends also fighting cancer - Alexander (18 months) and Mike (about my age) - keep them in your thoughts and prayers. And a friend that lost her husband through cancer just about a year ago - keep Kelly and her 3 children in your thoughts and prayers as well. And while I'm on the subject - just found out that a friend of mine from my previous support group has run out of options - will you keep Doug and his wife Betty in those prayers as well. Oh, and add my sister's husband - keep Wade in your thoughts and prayers. Then I just got a call from a friend, asking me to call a friend of hers to offer support because this friend a of a friend has just recieved a cancer diagnosis. Then my friend Heather who continues to battle stage 4 breast cancer - this woman is awesome, actually started her own support group when she couldn't find one that was able to meet her needs. A few more prayers for her please. And just one more person - someone who found me on line (most likely through this blog) who lives way up in Alberta, Canada. She honored me by asking me to be her mentor through her cancer journey. We do have a lot in common. Her name is Wafa. Please add her to your prayer list.
Then there are the many people who I see at Dana-Farber. Week after week of chemo is very draining on me but watching those at Dana-Farber fighting their own battle with cancer is inspiring. Please send prayers to all those nameless people as well.
Most people that are reading this can add to my list. Most people have a cancer story or two or three or four etc., etc.,. As I've said before, I see such examples of strength in other people and they just keep on going. I'm going to venture that what gets them through is the love, support and prayers from their friends and family. Also from the prayers of strangers, friends of friends of friends.
Cancer is not the only disease in this world that causes suffereing. It is one of many of the horrible afflictions that make valliant attempts to wear down the mind and the body. There is heart disease, brain injury, degenerative nervous system diseases. With this cold, cold weather upon us I think about those without shelter of their own. In these rough economic times I think of those without food and without gainful employment. Friends and family, please offer your prayerful expressions to them. On and on the list can go - mental illness, what a demon it is!!! Those that fight wars, families of those that fight wars - keep that stream of prayers coming.
I don't think life was really meant to be easy. Sometimes I wonder if it is just meant to be tolerable. Then I open my eyes and arms really, really, really wide and see love, feel good thoughts, and understand the value of prayers.
Sharing in eachother's joys and sorrows is the glue that bonds us all together. Where are the joys in this blog entry - an upcoming Franciscan Children's Hospital reunion, a night out with family at Fuddrucker's, a new and satisfying job for my daughter, my Women's Health Group at work, a friend's daughter's wedding, a new baby, lipstick... I should probably elaborate on these kind of things on the next post. But I mention them now because I know they are there.

I just composed a blog entry - I see a flight of ideas but I do see some common threads. So as my son is being taught in 6th grade language arts - end with a clinching statement to pull everything together. Can anybody think of one????

Old Life / New Life

I so badly want my old life back. This thought hits me in the morning when I go back to bed after Mario heads off to school. I would love to be getting dressed and going to work. I feel it after I wake up. Just taking a shower, getting dressed, and putting on lipstick should not be followed by a nap. Can't stand not having energy. I long for my old life when Mario gets home from school and I don't have the strength or the clear thought processes to work with him on his homework. Oh, how I wish I could celebrate, I mean really go out and celebrate my daughter, Michelle for her new job in Public Relations and my son , Gennaro (Jay) nailing down a job in finance 3 months before graduation. Over the weekend my husband did the housework, carted Mario where he needed to go, and put up the outside Christmas Lights. Oh to have my old life - to enjoy the mundane as well as the occasions that call for celebration. I missed Mario's basketball game and with this thought I long for my old life. Tried to work-out a little, just at my home. Nausea and fatigue followed. Oh, how my life used to be different!
I am very sad that I have treatment every week! It keeps me from living my old life. Not a fast paced, jet setting, magazine style life. Just the everyday things that I once took for granted. Work, housecleaning, homework time, family celebrations, kids sports, church, and excersize seem to be the things I long for. Life before chemo - It teased me for the last couple of weeks. I continue to lament about quality vs. quantity.
For every piece of my old life that I did not appreciate, for every friend and family member that I overlooked, for every day to day task that I complained about I feel the need to be apologetic. For all were the best in my life. Lessons learned through my cancer journey have been very simple, humbling, and profound. I really had it as good as it gets.
I am not being ungreatful for the things I have now or the things I gained as cancer continues to take its course. There is a different kind of closeness with my friends and family; I am sincerely greatful for all my human interactions; the days I make it to Mario's games are never met with "oh, do I have to go"; the good conversations with Michelle and Jay are replayed in my mind over and over; if I go out to exercise or work I am taken back by how it normalizes my life; and looking at my husband with sincere gratitude fills me with satisfaction.
Today I will try to appreciate the things my new life brought me and stop feeling sorry for myself because I can't have the old life. I will do this right after I take a little nap. Posting really makes me tired.

Thanksgiving - My Saving Grace

It has been a while since I wrote but now I feel the need. I can't help but to contemplate the "quality vs. quantity" question that keeps bothering my brain. I don't just think it in those words but there are so many thoughts and questions to contemplate - all that bring me to "quality vs. quantity." These thoughts include "you are strong so keep fighting this thing", "what are you trying to prove", " does this make sense", "with a good scan I have to keep going," how much longer can I live this tortured life", " I don't want to check out earlier than I have too.", "How much more can I take", "is all this post-chemo reactions really giving me life", "these decisions are just too hard", what is best for my family"...and on and on my mind will race.
For me, sleeping is the only thing that can calm these racing thoughts. Thankfully these days sleepings comes easily, as a side effect of the chemo and anti-drugs. But it only helps me to avoid big time thoughts and decisions. But it can be such a peaceful state - free from pain, worry, and cares. So I wonder more if death will be like a peaceful sleep. Slow down brain because I really don't want to go there. So I remember that I just need to live a little at a time so that life doesn't feel so overwhelming. I've got something to get me through the month of November - I look forward to Thanksgiving. And yes, Thanksgiving at my house, as has been the tradition for many years. So I know that I will be safe in November because I've got a show to put on. I understand that the ghosts will most likely appear, but over these last couple of weeks, they have been appearing at a frightful rate anyway.
So back to where I started - "quality vs. quantity" - It just depends on the day, depends on the mood, depends upon how much reality I can escape. For I feel a very deteriorated quality of life. But now I have Thanksgiving to focus on - the holiday, the tradition, my family, the food. And yes, there will be wine to drink which can drown the sound of the whine in my heart. And as an added bonus - I have the Friday after Thanksgiving off from any chemotherapy - Thank you again Thanksgiving.

Moderation

It's 7:30 AM, got Mario off too school (I just love that kid), and I am lying here feeling a mess. I keep saying. "Get up and make yourself move" "Why aren't you working today?" Why aren't you at the gym?" "Shouldn't you be doing housework?" But there is complete exhaustion at this point. And all I did was wake up with my husband and Mario, get Mario breakfast, made him lunch, told him to brush his teeth, and kiss him good-bye. Could anyone guess...possibly 100 calories expelled. But I have no energy! I also have hair that continues to fall out in small chunks, skin that is peeling off my face, and lips that feel so swollen because I have mouth sores in the inner part. And that is only what is wrong with my head and my face! (Not even near a complete physical exam.)
My mind continues to talk with two different voices - one is telling me get up, don't go back to sleep, the day is just starting, you'll feel better if you just make yourself stay up. And at what cost - possibly a great day with me dancing on the rooftop saying that all I needed was a little push. The other part is watching me dance on the rooftop, calling me a fool, and watching me tumble down to the ground and add to my self-deprecating feelings.
Unfortunately there is no way to "will" yourself to wellness. I keep trying to do that and when it works I'll let you all in on the secret. What a great Nurse Practitioner I would be if I could teach my patients to will themselves to wellness. What a gimmick! Could they will themselves to thinness, will themselves to strength, will themselves to beauty, maybe even will themselves to equality. (W0w, Will yourself to equality - that is something to ponder, but I'll save that for another time. I think my brain is too tired to ponder right now.)
There has got to be something positive to be said for that pull yourself up by your bootstraps, a good kick in the pants to get yourself going, not sitting around feeling sorry for yourself attitude. But if you don't tread slowly and carefully then you'll end up falling off the roof that you just saw yourself dancing.
Everything in life is a balancing act. Everything in moderation. You need goals but you also need reality in those goals. This is the way I plan to get through the rest of my life. (At least this is today's plan) Set up small goals - each small goal should get you closer to a large one. Now I need a short nap - My ultimate goal is to get out of the house today and accomplish some sort of errand. How will I do this - just put one foot in front of the other. Get up after my nap, take a shower, clean all my hair out of the drain, brush my teeth, get hold of myself once the stinging from the toothpaste on the mouthsores subside, then time for makeup to cover the skin problems created by chemo, and lastly put on my red lipstick in an effort to look like I have sexy, botox injected lips instead of just covering up some of the cosmetic damage from the internal mouthsores. Within these steps I have to remember to put some clothes on to cover this body that has been recently neglected by lack of exercise.
I didn't want this post to be negative. I was really hoping it would tell everyone that I was dancing on rooftops, dressed to the nines wearing a great big red lipstick smile despite the way chemotheray and cancer dance in my body. Unfortunately I'm not there yet. I'll try to be easy on myself, and try to intellectualize the effects of chemotherapy on the body and the mind. But as all things should come in moderation but my chemotherapy has not. I've been on chemotherapy, almost consistently, for the past three years and now I have this power schedule of chemo every week. That's not moderation. That's total immersion. So now I have a bright side to end this entry. The amount of chetherapy I've had is enough to kill anyone. But I'm still very much alive, still trying to fight to have a normal life. I'm just a little slower and a little tireder than before. So the nap sounds good but I promise all my friends and family that I will be awake later finding something else to beat myself up about.