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My Blog
Friday, 5 October 2007
Life on Tuesdays
Mood:  bright
Topic: Living with Cancer
  • Life on Tuesdays

    Ok, here I am ready to strike the world again today.  It is Tuesday.  I don't know if it is Tuesday's I hate, or just mornings.  Maybe it is both.  You think?  Tuesdays are just another day in the week, but it is also when I have to go up to the hospital for blood work.  My veins are shot, so they do it in my port, which means a huge needle going more than an inch in my chest.  I have cream I put on, but you still feel it.  It is quite large in diameter, so it can’t help but hurt.

    I Think I Want To Live

    I want to hold onto life with a vengeance.  I can't figure it out, either I want to have life and go full steam ahead, or say "To heck with it" and give up.  Friends and family can make a big conflict within you with that decision.  I guess there are as many days I don’t want to really hang on.  It would be much easier to give it up.  It is so confusing, on my left stand's my "so-called" friends.  They suck, and on the right, my family.  Oh, not all my friends and family, just certain members.  They have to know who they are or they are totally brain deficient.  Of all the places to be writing, I am in the bathroom.  Not sitting on the toilet, but on the side of the tub.  I must be really down.  I can hear my little dog howling for attention in the other room.  Why he goes in the other room to howl I will never get.  Perhaps, it is because I love him dearly and run to him because he makes it sound like his little heart is broken. 

    Depressed!!!  That's it.  That is why I am teary eyed and melancholy.  It couldn't be the fact I was awake feeling awful all night, legs aching, stomach hurting.  Nope it has to be depression.  That is what my psychariatrist would say.  She would know I am sure.  I love the woman, but she is an eternal optimists.  I finally agreed to listen to her and then go on my way and console my own self at the pity pot.  Sometimes I get off it, wipe myself and flush and off I go again, almost living.  Other times I need someone to talk to so I go to the pity party, but that doesn't work any better.  The invitees' don't want to hear I am fearful of every ache and pain being more cancer, nor do they want to know it could happen to them, just because it is a woman's cancer.  I guess you can turn and turn, until you go in circle and you never end up in the right direction. 

    That’s it, when I want to think back over these things then I need to compartmentalize them.  Voile. 

    Friends are so Helpful.

    Not!  Maybe I am a bad person, I have tried to live a good life and be nice to people, but either they walk away or I feel like I must be a vile, evil, piece of trash around them  I do have some thoughts, but I do keep them to myself.  I could win awards for acting for how I try to make them each feel special.  There are some that stand out more than other.

                The Hypochondriac

    She always has something major wrong and keeps on doctors until she gets whatever kind of surgery she can get, uses a friend (to the point she has to take time off work when the lady’s family will be there with her during surgery) and has this poor lady do her attacking to her husband.  The poor guy just takes it.  She complains how she doesn’t have anything, any money and how bad life is, and the one lady is a “caregiver” and it breaks her heart.  I don’t know if she realizes the hypochondriac is the only one who buys “Junk” when they go shopping and has exotic and fun vacations every year.  The poor caregiver never has a vacation other than the one with this girlfriend and to the car shows her husband likes.  I have never known her to do for herself.  My heart goes out to the  “caregiver” not the “Hypochondriac”.

                The Caregiver

    Yes, she is a good caregiver to her friend, husband, daughters, grandchildren and her father.  But the rest of the world might as well go away for her.  She hates her mother extremely jealous of her sister, and in General thinks she is “it”.  She can do no wrong.  Jokingly the rest of our group of friends call her the “Queen”.  Even some of her husband’s friends call her the “bitch”.  I feel sad for her.  She is oblivious to all around her and is so self absorbed she can’t see out around her little cluster of people.  I agree, her mom hasn’t been perfect, but who’s mom hasn’t made mistakes?  I am sure she has as well.  Maybe not the same ones, and maybe there have been far more than I am privy to, but I have known the woman for 35 years and she isn’t that bad.  She would give her life for the “Queen” I am sure.  And the little sister, it is pure jealousy.  Little sister’s kids got more attention from grandma (the only one around, where the queen had several grandma’s for hers) and grandma has bought things for her, but that isn’t little sister’s fault.  She just took what was given.  Anyone could say no.  But not the Queen.  Her mother and sister will always be beneath her because mom gave more to little sister than she did to her, and little sister had help raising her kids.  Heck, the “Queen” would not have stood for the maternal interference that was played.  I love both the Grandma and Little Sister.  And Yes, I do care about the “Queen” too.  The “Queen” decided to see a psychologist and if she thinks he sides with her, she jumps on the cart with him.  Rather than weigh out the fact he only gets one side to the story, and there are other circumstances, she just says “there, I was right.”  Not so queen.  You need to tell both sides, unbiased to get the help you are looking for. And still, you need to scrutinize the whole conversation each time.  He told you to let the situation for the hypochondriac go, but you can’t and won’t.  God Bless the Queen.

     

    Miss Everybody’s Friend

    Bless your heart.  You are a sweetheart.  You try so hard to please everyone and honey, it ain’t happening.  You need to just try to please you and your hubby.  Your beautiful daughter leads you around like a dog on a leach and for a long time I didn’t know you had another child other than her.  I get so angry seeing her take advantage of you and keep my mouth shut.  She is the controller.  If she wants to have to see the boys fine, but it must be on her terms and times, yet if she wants something, God forbid you say no to her. 

    Ok, I didn't finish all that I wanted to talk about yesterday and awoke in a fairly good mood, but, that was subject to change and did it ever.  I will continue on with yesterday later in my blog.  I called friends of my husband “The Hypochondriac” and husband because he dropped off an invitation to a Halloween party to be held October 13.  He had dropped it off last evening.  I was unaware that he had been here therefore didn't know his wife with him in the car waiting.  He had gone to the garage behind our house and gave the note to my husband.  I did not want to appear rude thus the reason for the call.  My mood changed immediately almost when I started hearing about the poor little hypochondriac.  She is still on pain medicine even though it's been two months since surgery.  I'm thinking welcome to the club.  I have been gutted like a deer in yet haven't complained as much.  I told him I had been calling to check how she was doing but no one returned my call and it seems like at first friends wanted to know all the symptoms when it didn't die they no longer wanted to be around me.  I also pointed out that their husbands had promised to come over to see my husband but have forgotten about him also.  Feeling bad for the things I had said I ended the conversation asking him to tell his wife that I had  called and was thinking about her.  Shortly there after the phone rang and I got my butt jumped royally.  Miss “Hypochondriac” it seems wanted to let me have it.  She called the answering maching and he and I had an and there is a way of and I are you a writer in a way though I had to go all the way though.  You know you are in and on and on and on and on and on a little evil thing on my new on loan people you're going to and Dole in one She stated I was rude not to come running to her at a car show recently.  I said the path leads both ways and I did come and see her and reminded her I showed her pictures of my daughter in law’s beautiful triplet nephews. 

    Ok, it was expected.  My mother had breast cancer and two of my aunts died from Ovarian as did one cousin, so I know my time was coming.  Boy was I fooled.  Sure enough, the Doctor told me after my mammogram I had DCIS (the best breast cancer you can get if you are going to get it) and would need to see a surgeon.  No problem, in fact, it was a piece of cake, (almost).  Check out “A Double Whammy.”  You will find out about Breast Cancer.  A very short story “Thank God.”

    Then it happened, I learned how to stand on my head, balance for months without falling and try to keep my skirt from showing my “Lacy” Panties and only show my “Big Girl Pants”.  They called it “Ovarian Cancer.”

     

    It is amazing what life brings you.  Happiness, knowledge, peace, tears, fears and so much more.  You are born, usually with a family that dotes over you and tends to every need.  You know somehow, instinctively that you are safe and cared for.  Your mother, or these days it could be your father, keeps you clean, dry, warm, fed, cuddle and entertained.  Some days I would love to be able to have those feelings all at once that I don’t always remember.  Those are the things you took for granted growing up and forget the ones around you did for you so very many years ago.  When you think of them you marvel over the unconditional love you received.  The many tumbles and falls you made, scrapes and cuts you and fears and nightmares you lived through, only because someone was always there, giving comfort, or kissing away what hurt you.  Life would be even more wonderful if you have that kind of experience daily in your life.  But, you grow and in this growing you learn, by nature to develop your own.  You learn to fall down, get up and not look around for the comfort.  You learn, you have to take care of the bug or spider, because someone isn’t going to be there to take care of that fear.  At the time you are growing, you are thrilled standing on your own two feet and being independent.  Would you ever have though you would like to go back to those moments where you were dependant on everyone and everything around you.  I guess everything has it’s price and independence has a big price, but you think of it as a “Prize” at the time instead of as a price. 

    I am not scared of death only scared of the pain on the journey of getting there. I have a wonderful relationship with God, so, if this is my time, then I am ready to meet him, but if this is not then I am ready to take this on, and to reach out to those in need. So either way I WIN, I cannot lose because I am on the Highest of Highs team. So, as you pray just pray that there will be no pain, and if this is just a stone in my path that I have to walk around, then pray I overcome it with all my might, and that there are endless opportunities to talk to doctors, nurses, other patients, families of the patients, and anyone that I may come in contact with because of this disease. I will turn what most people look at as the end, into a new beginning for those who do not know of the disease and the faith it takes to endure it.  Although others feel they are in this with you, you yourself know they are there, but this is your Goliath you have to face alone..

    Near The End

    Even though you know that birth, aging, illness and death are the inevitable path of life, but until you get ill, you then become conscious that they are the rules of nature, no one can run away from them. So one should not consider being ill is such a misfortune, because if not for being ill, I would not have had time to sit back and recognize  all life had given me. And being ill made me realize that life is precious. I can appreciate the rest of my living days doing things according to my own precedence. For example, you'll understand that in your life, the fabric things are not that important. There are [more important] things like aspects of your beliefs, the people who you are close to, your relationships with family and friends. You work harder on them, and will hopefully  receive more love in return, and you will give out more love to the others. I feel that is a certain gain of being ill. I think birth, aging, illness and death are very expected If you have had a good one, then you have got to be thankful for for being so lucky already. When death comes, no matter who you are, we will all arrive to that time, so nothing is so exceptional. If you look at it as a whole, from the time you were born; you will be headed for death. If you can look at thing this way, you will not have any doubts.

    And to achieve more or less out of life, it is up to the person. Some people have everything but they still try to count what they don't possess. But some people have very little, but they appreciate what they have, and then they truly own those things. For instance, I don't have many family members, but if we have good interaction, then it is more than some people who have a hundred relatives but do not care. Comparatively, I do not have less than them at all.

    I can appreciate what I have. When the time comes, I pray that I will leave peacefully. It does not make any different if you own more or less.

    I don't know if I want anybody with me at the time of my death, I don't want to have memories of my dying, but of my life in better times.  These times have not been good as it is said and done things I shouldn't have.  It would be much easier for me to blame the ones around me and it probably will in these writings, but in fact it is all that I have said and done to make it all grow out of proportion.  I have requested of me dear husband to make sure that I go to a hospice place rather than die at home, I want to conserve the memories there, to be happy ones.

    In the Beginning

    Leave it to me disturb you beginning toward the end, or at least not where the beginning supposed to be.  I think I had ADDT, because I've never been a do anything in the order is expected.  Has anyone ever been or felt as ignorant as I feel as I strive for survativorship to this nasty disease?  25 years so, I had a partial hysterectomy because of endometriosis.   Before surgery, I asked my Doctor to take everything, including ovaries as I did not want to have to go through a second surgery down the road should there be a problem.  He said he wouldn’t even take my appendix, unless it was where he could see it.  Here I was, opened from hip bone to hip bone and he said no to appendix.  I recall again mentioning my ovaries and he said no again, because it would put me into my change of life immediately and I was too young.  Since he was a Doctor and I was taught to respect  anyone who was in a better position, older than me and actually everyone I would meet in life, therefore I didn’t argue and accepted “his” decision  Because of allergies to some medication, this Doctor told me he would be using what was called a “Tens Unit” on me.  .   (By the way, at “Tens Unit” is a little box like an IPOD that has wires  coming out that goes on each side of of the wound and supposedly stimulates nerves and block any pain.)  Guess what?  They use them more for arthritis.  It didn’t work at all on surgical pain.  Although I know now you can have OVCA without ovaries, as I understand now, it could have lessened my chances of developing this blasted disease.  I begged the Doctor for plain Tylenol only to be told I didn’t hurt, it was all in my head.  So much for an abdominal hysterectomy with no pain killer, because it hurt and I am not usually one to have a lot of pain and not deal with it.  .  Not fun!!!  It has made me “gun shy”  about seeing a doctor…could that be why I was not diagnosed before Stage IIIc?  Naw..maybe it was the respect thing, not questioning others but trusting. 

    Somehow I never did ask "why me?" Rather I asked, "why not me?"  I think deep down it is better than me than my family.  I don’t know if I would be strong enough to endure the pain of watching my husband, son, daughter in law or grandchildren go through this.  Even my friends, I wouldn’t want this for them so I guess I am glad it is me.

    They say a diagnosis will forever change you. It’s true. After many rounds of chemotherapy, profuse vomiting, experiencing insomnia, having every bone ache in my body from my marrow trying to build the cells the poison is destroying and not having enough energy to even make my bed, I realized more about my life than ever before.  The days of radiation and the burns are long behind but the fatigue hangs on like a summer cold.  There are days I have to struggle to brush my teeth and dress myself.  You wouldn’t things simple things would be so hard.  My house is in need of such a heavy cleaning I would be embarrassed for anyone to enter.  I know, people say your home isn’t bad, but you know it is horrible.  I just hope my friends and family don’t embarrass me by insisting on coming in some days.  You always have those few that don’t give a darned.  Take for instance, last summer, I was going through chemo, and supposed to stay away from all people and germs.  My platelet count was so low when I had a transfusion they said it was critical, we had a couple stop by.  We sat on our porch and I was so sick I thought they would never leave.  It wasn’t long when the woman said she had to go in the house and use the bathroom.  I know it is rude for me to resent this, but at the time my white blood cells were so bad, I was lucky to not be in the hospital, yet this woman wanted in my house after I had explained it all to her and her husband.  Heck, her husband had went through cancer the summer before, so she knew.  She didn’t care about him then, so she sure wouldn’t as heck care about me.  She is the one I refer to as “the hypochondriac”.  At the time he was going through chemo, he hadn’t gotten to the low counts of blood, and she ended up in emergency with one of her horrible diseases that seemed to have disappeared as nobody hears of it anymore, and her poor husband had to sit in the hospital for hours and hours with a mask on.  My heart broke when I heard of that one. 

    When I look back on those first few weeks after diagnoses, they are of
    course all a bad blur. There is one thing, however, that I do remember. I would spend hours, most during the late night, searching this website and others like it -- not necessarily for medical information, or treatment options or support, but for one thing: I wanted to find a woman who had been EXACTLY in my mom’s situation. A woman who was her age, had a similar health history, was diagnosed with the same stage and type OVCA, went through the exact protocol my mom was then planning to go through and was doing absolutely fine years later. (How naive I was . . . .) I guess I was really looking or a story of hope. I wanted to know there was at least one woman out there that had made it through this nightmare.

    When I came out of surgery, I just knew that something was wrong. A few minutes after I woke up, the doctor and his staff talked to me. They said it was very bad and that they had to call a surgical gynecologist/oncologist to help assist with the surgery by telephone. They had to remove my remaining ovary, fallopian tube, uterus, cervix, omentum and numerous lymph nodes up into my diaphragm. They said that the lymph nodes were much enlarged and did not look good to them. I think I was in shock at the time because I just nodded my head and said nothing. That night one of the doctors who were present for the surgery came into my hospital room to speak to my husband and me. He told us that I would be lucky if I survived two years since everything looked so bad.

     I have a poem I will try to find I received from a friend, yes Virginia there is a friend, about things what Cancer cannot do.

    What Cancer Can't Do

    Cancer is so limited

    It cannot cripple love

    It cannot shatter hope

    It cannot erode faith

    It cannot eat away peace

    It cannot destroy confidence

    It cannot kill friendship

    It cannot shut out memories

    It cannot silence courage

    It cannot invade the soul

    It cannot reduce eternal life

    It cannot quench the spirit

    It cannot lesson the power of the resurrection

     

    I am sick of people saying, you have such a positive attitude, or it is your attitude that will help you make it.  I say baloney.  It is a lot of blood, sweat tears, fears, lack of sleep, lots of confusion, more of loneliness and so much more that helps you make it.  Everyone expects you to be happy, cheerful, and be optimistic.  I don’t understand why they have expectations of you, when you are not allowed to have many expectations of them.  With you, you are supposed to be strong and forget you are sick, because they sure don’t care if you live or die.  But goodness, don’t expect them to call and say “how are you?  Really, how are you?”.  Casserole, what is that?  You can be so sick you can’t cook, but God forbid someone bring a simple casserole for your husband, those are reserved for funerals.  Remember funerals?  That is where everyone who doesn’t give a darned goes, and the ones who care the lease boo hoo the loudest expressing how wonderful you were and how close they were with you.  Kind of like you were tied at the hip when they haven’t bothered to call in such a long time, you don’t even have them cross your mind anymore.  I know when I was first hit with Cancer, everybody wanted to know all about it.  They were sweet, kind and almost sincere, at least they had me fooled.  And then you go into an 8 month remission and they disappear when the cancer returns.  I guess you don’t die quick enough to suit them.  I shouldn’t be so unfair.  It just gets frustrating.  I know they are uncomfortable, worried they might say something wrong, or if there is something they should do, but you are the one dying, you would think it was the other way around.  I try to just go on, smile and keep my mouth shut, but nobody knows the tears I shed when I am alone because of the ones around me.  I hope somehow this darned disease and the hurts and disappointment can turn into something good that can help someone else along the way.  I feel now like everything I feel and think are so negative.  My so called friends, my family and yes, even the love of my life makes me feel that way.  I am frustrated but don’t know how to deal with it.  I am NOT always negative but it feels like others can’t deal me and turn everything around and frustrate me so I know it makes me angry, hateful and negative.  I don’t blame them, it is my fault for allowing it.  I need to get up and walk away from people to instill those thoughts and feelings on me.  I am dealing with enough just to function throughout the day right now.  I don’t need to carry around others guilt, frustration or baggage.  That sounds cold I know.  I want to say “I’m sorry”.  I do that all the time.  I am sorry if someone else stubs their toe, I am sorry if dinner doesn’t look like a magazine page done by a food designer, I am sorry for taking up others air, I guess I am sorry about everything. I am not sorry though for my choice of my life’s partner I have been married to so many years ago, nor am I sorry for my son, even though I feel he doesn’t care about me, I am not sorry for my beautiful daughter in law I know that just tolerates me, I am not sorry about my beautiful grandchildren, and I am not sorry for my “broken” little dog who has affirmatives. 


Posted by grandmaofjtt at 9:17 AM EDT
Updated: Friday, 5 October 2007 9:24 AM EDT
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