Saturday, January 15, 2011

My shell feels weak

Today's shout outs:

Lisa H,Wanda G, Kelly B , Debbie G, Barb B, Kim A, Lisa L, Jill D, Shelly P, Marsha S, Lisa F, Libby H, CarrollAnn, Leanne P, Robbin P, Susan S, Lori G, Shannon and Linda, Judi, R, Fran N, Connie P, Denise J, Cindy M

**************************************************

Hi friends,  today is Saturday and I feel much better than yesterday.  Nausea wasn't an issue really for me yesterday or this morning so far, so I'll take the silver lining and run with it.  The problem yesterday was the fog and  fatigue. I was extremely tired all day, but wasn't able to just sleep it away.

The negative component of the fatigue was that it depressed me and made me angry at the same time.  Made me angry with  my situation, made me angry at the cancer, made me angry that I could tell that I was not the person I wanted to be on that particular day.  It also made me more vulnerable... I wanted to cry more and huddle up and forget.  I felt like I was a shell of what I should be.  The simplest tasks were confusing and didn't make the most sense and when I couldn't get my thoughts out, then I got snappy with the most important person next to me.  Yes, poor Kevin, although he did take it well and still loves me at the end of the day.  In essence I was just pissed!

Kevin went to work for a bit and he called to check up on me.  He had done what he needed to do downtown and was headed out to the transfer station.  He has spent literally the last month not working and staying with me and it is really time that he slowly start weaning himself back into a modified work schedule.

When he called, I was just grumpy.  I was grumpy that he was doing something that he used to do everyday.  Ironically, he of course is driving around and doing work while thinking about me.  Deep down I know this, yet it was still hard for me to not resent that he was doing something normal.  I still don't feel normal, but in actuality he doesn't feel normal either.  What hurts me the most is that the  abnormality of my life has truly affected all those around me that I know and love, and it has affected their normalcy in either minor or major ways.  I am the cause of that and that makes me sad.  Ok... time to stop the wallowing... pheww... 2 deep breaths and lets move on!

The infusion port and pump is annoying and bothersome as well, but not debilitating.  On the one hand I'm grateful for it because it is the right medicine that I need to fight my disease, but on the other hand it is a constant reminder that I do have this disease.  I mentioned earlier that it makes a noise very similar to what a camera lens sounds like when it opens and closes, well, that noise has become so annoying to me.  But again, the silver lining is that we can de-access it soon - 7 1/2 hours left.  I am also extremely grateful that I don't have to wear it for 5 days as originally thought.



Another component that is starting to rear its ugly head is the loss of hair.  Its coming.  So far, no clumps, but every time I run my hands through my hair I get at least 5- 10  more or less strands.  It will be decision time soon.  Hats, scarves, wigs, or bald.  Although I read somewhere that you can loose 1/2 your hair without anyone even noticing.



I'm glad I didn't write this in my much more angry mood last night.  I don't think I was coherent anyway, and this always me to reflect better and recall some of those silver linings.  Thank you Kevin for sending me to bed.  The Lorazepam does help for my anxiousness and got me going for the sleep I did need.

Until the next time.

-Katie

54 comments:

judy said...

It is so difficult what you are
going through< Katie! I remember
the brain fog of chemo and the
irritability caused by the steroids.
I love it that you always look for
a silver lining but it is also ok
to feel the anger and the grieving
for your more normal life. You are
very brave and obviously a very
sensitive and attuned person. I keep
you and your family in my thoughts and prayers!

Dinahsoar said...

What you are feeling is normal...cancer sucks...you're in a club you never wanted to be in. And feeling unwell physically is hard...it can be debilitating at times. The only grace available comes from the hand of God who gives grace as we need it...some days we need a lot of it. Grace doesn't make the hardness easier...but it does give us the ability to 'see' it differently...to keep on keeping on...to fight the battle we find our self in and hang on until we are finally delivered.

jackib said...

You are just the cutest little thing! I am amazed at your strength in going through this crap. It's so unfair. Cancer is just not fair. I wish for you continued strength and your ability to be honest - whether it's anger, a silver lining, exhaustion, or whatever you're feeling at any particular moment. Go with it - be yourself. Hang in there, girl. We're with you all the way!

Sue Ann said...

I wish I could hug you ...... I am sorry you had a bad day but I am happy that you have a fantastic husband to help you over these hurdles!!! Keeping you in my thoughts and prayers!!!

donna c said...

Out here listening. I am glad that you are not nauseaous. Hope the fog and fatigue lifts soon.

Ted said...

Katie, it's okay to feel down and angry. Let that anger fuel you to fight this thing head-on. But... as you said... enough wallowing. You're a strong woman and if you let this get you down, then your foe...the cancer itself... is winning. And it won't. I truly believe that. I believe in God and I believe He is listening to each and every prayer sent on your behalf.

He wants you to fight, Katie... but HE also wants you to rely on Him for strength. You don't have the strength to do this battle alone. That is why He has sent you Kevin and your sons and your family and friends. We're all battling this with you, either physically or spiritually.

Regardless, you WILL be the victor.

God bless.

Holly said...

Poor Katie! You have every right to be angry - it just sucks that the only ones you can lash out at are the ones who care about you and are angry at cancer too.

Cricket said...

Katie,

Your feelings are normal. I am sure your wonderful husband realizes that. Don't beat yourself up. You have enough on your plate.

I will say it again, I am truly amazed by your strength and I am not sure I could be as strong as you are.

I am going through this with my father. It is hard, but he has prevailed and so will you.

God Bless you and your family.

Cricket

Shazza said...

you have every right to be angry
hugs

x

Emily Painter-Davis said...

How can you not be angry my friend?
We're all angry. Cancer is an ugly beast that makes us all angry. Let it out... don't beat yourself up for it. I'm sure Kevin and your family, who love you most... will surely understand.

You need a punching bag with a big fat C on it!

Love ya!

rooney said...

Katie and family,
Praying for you from Missouri. May God infuse you with strength and vitality! ... and healing.

Jackie

sweet craf-tea chick said...

sending you big *hugs* and keeping you in my thoughts and prayers. stay strong and know we are all thinking of you. *hugs* steph

Margreet said...

Hi Katie...I always read your story but doesn't comment everytime...I think you are so good in written it off you...you are always in my thoughts!
xxx Margreet

Candy F. said...

I'm glad you are angry because that means you are fighting! We always snap at the ones that are closest to us and I know that Kevin knows how much you love and appreciate him. Hats, scarves, bald -- I think you might be able to rock the bald look and you know you already have a hat coming your way! Love you and am so proud of how hard you are fighting.

Curt in Carmel said...

I'm so sorry Katie that you had such a day, but your feelings are way normal and you have a right to them. If Kevin is anything like me, he understands totally and knows that it's all because of what you are going through and he'll shake it off. Don't feel bad about being angry. It means you still care. Feel what you must, but don't stay in that feeling very long. . . keep moving past it and keep fighting the fight. Yell, scream, cry, put holes in the walls if you must, but keep going kiddo! I have faith that you will see this through. I'm giving you a "2 snaps in a circle" and a "You Go Girl"! LOL I don't really talk that way, but I thought it would make you laugh! Hugs sweetie! Best, Curt

Lori McCroskey said...

I love you Katie! GREAT BIG HUGS! Kevin understands....everyone understands. Just remember it is the medication....it is not you. We are all praying so hard for you...God is going to answer! God sees all the tears we have each cried for you. love, Lori

Theresa Momber said...

Sending big hugs!!! Hope today is better!

Justme said...

Hi Katie, I understand in my own way. I am housebound on oxygen with very little lung function since my late 30's when this hit me. I always had Fibromyalgia, but then Rheumatiod Arthrittis hit me and it is systemic and destroys all of your organs. My heart, more with my lungs, too much to mention but yes it sucks and you DO get angry. It affected everyone I loved of course and now most of my friends have become ill themselves, moved or died. I've lived here for over 20 years but I can't get out and all of my neighbors are new now. I lost my dad last year and it took 2 of them to haul my oxygen supply and me to be there when he passed and to his funeral. Then I'm flat for days. Some days I can do something, many days I can do nothing. Twice in the past 2 months our son found me unconscious with my arm opened up almost to the bone and I have that thin skin syndrome from the prednisone, on and on, and it will never go away. I can't get used to that. I pray for youu and there is hope, I send my cards to hospice, the seniors and childrens hospital now that I can't go in person. Don't feel guilty about how you feel let it out, here, write me if you want to I am a very good empathiser or listener, whatever. I'm so isolated but for my computer too. I have friends that did recover from cancer, hep C many things so I will pray for you and if you'd like to write PLEASE do so, write my personal not blog addy blue5ft3@aol.com they don't block anyone! Sending LOVE and PRAYERS Donna

Justme said...

PS Plus you are much braver than I am to share, I'm trying to be better about it, I isolated myself so how I am now or because of how I am now, I don't know, I just kept it to myself and tried to put on a good face. Makes no sense yet it makes perfect sense at times.
I'd like to say how are you? I do mean it, I've had too many people say they did not share things with me because I had enough on my plate, OUCH I said PLEASE SHARE and they they would THANK ME another OUCH, I just wanted to be treated as me, not defined by my lllness etc.
Keep up the good work! Donna

Kelly S. said...

Hopefully by the time you read this, your 7 1/2 hours are done, and you'll have that thing out and be back to some more good days! Sending big giant positive vibes and prayers your way, Katie!

Audrey Frelx said...

Go ahead and wallow -- you're entitled and it IS normal!!! It's all normal -- to be angry, frustrated, all of it!!! We understand and I know no one's feelings are going to change toward you because you're sick. You've been so brave, and sometimes you just have to let your guards down, be you and deal with how you are the best you can. Honey, don't be afraid or try not to react -- just let go when you need to!

God bless you and your wonderful family!

Hugs!

Tricia said...

Bless your heart! I'm sure that there will days like that as your body deals with the "help" that it's being given. Remember to continue your journey toward God during these times. "...He is a rewarder of those that diligently seek Him."

{{Hugs}} as you find your new hairdo!

Tricia

Joan B said...

you say here what you need to say as we are all listening. the only sentence that i feel is not accurate is other people are hurting because of you. you are not the cancer. you didn't cause it, contribute to it and are fighting it as best as you can. just felt the need to say that.

i think of you every single day, often several times a day sending you the best vibes i can.

Saskia said...

What can I say, what can I do...
I can only tell you that you're in my thoughts Katie!!!!!

Sweet greetings, Saskia :)

Jak Heath said...

You hang in there girl and think of the better days to come, each day got gradually better after your last treatment look back and read it Katie you'll see.
Stay strong you can do it and as for your hair, if it goes in the process of kicking the cancers ass then so be it, it will grow back.
We love you and are fighting with you all the way.

Jak x

Donna said...

Hi again Katie, you are in my thoughts daily and I come on the computer to see how your doing, you have touched so many of us with your story and although you don't know most of us, we are here willing you on. I'm not a very religious person but I say a little prayer for you. I hope tomorrow is a brighter day hun, you are so brave. big hugs. Donna x

Anonymous said...

Hang in there Katie, my love and prays are with you for a fast recovery. Victoria

Meredith said...

Even though this post was more "down" than usual, I still enjoyed reading it. I like seeing the bad reality too, and hey, there are going to be these days - how can there not be? Thanks again for sharing this journey... I check in on you every day!

Claire's cards said...

You have every right to be grumpy, it is hard to see the illness having an averse effect on your loved ones. Keep up your strenghth, I'm sure everyone here is all the way behind you.
Love
Claire xxx

Sewflake said...

Katie, If I can vote, I would vote for hat,scarves, or bald. I did not "know" you for very long when you had long hair. I love the short look (partial to short anyway) and think you would look smashing with hats, scarves, and yes even bald. You have a beautiful soul and it comes shining through with every post!
Many hugs,
Sharon D

Sue from Oregon said...

How do I tell you to be strong, when I would be darned angry myself. I hope those days are very few and far between for you my friend and glad to read that today is a brighter day. This "stuff" definitely messes with your brain and concentration besides everything else. Just do what it takes to get through the day and try not to let it get the best of you. More Hugs today!

Debbie Seyer said...

{{HUGS}} I watched my dad go thru this same thing and your feelings are, unfortunately, normal in this situation. Letting out your feelings thru your blog is a good thing! We are all "listening" and we are with you. Can't you feel the love?

I think bald with cute hats and scarves is the way to go. Wigs are itchy and hot.

Erica said...

Prayin for your strength Katie.
Reading your meaningful words. Sending cyber hugs your way everyday.

Anonymous said...

God bless you Katie....
Wishing you well

Susan said...

I am sorry for what you are going through, Katie. A few things to keep in mind: Although your illness affects everyone around you, it is because they love you. But (repeat this as often as you need to) IT IS NOT YOUR FAULT. Allow them to share your burden. Allow them to be strong, and allow yourself to be weak if you need to. Finally: When it comes to hair loss, do whatever makes you feel empowered. Fun hat? Bandanna? Wig? Bald? Whatever matches your mood or soothes your mood. Take care, Katie, and keep on swimming (Dory in "Finding Nemo").

Cherie said...

Hello Katie
Thank you for allowing me to follow your difficult journey and all that goes with it.
The honest account of your illness, treatment and feelings is truly inspiring and makes me fully realise the dramatic effect this illness has on you and your family.
Keep strong and know that my thoughts are with you,
Best wishes
Cherie
Brisbane Australia

Mothermark said...

I am glad you feel a little better today. How can you not be grumpy Katie? Your life has been turned upside down! I am sure Kevin only cares about you....not your mood!

Hope today is an even better day for you!

Anonymous said...

Sweetie! Don't blame yourself for feeling out of sorts. Not only is the cancer diagnosis a scare -that dexamethasone makes most folks hyper/ angry/ wakeful/ - so it's just the meds you are taking.

Thanks for sharing your life on your blog. I try to have a card in the mail to you soon.

You are in my heart and prayers.
Deborah aka debzi333 on SCS

Sandybeaches said...

You are such a powerful and wonderful woman! Thank you for sharing your emotional rollercoaster with blog world:) Keep your strength and determination strong! You are in my thoughts and prayers:)

Queen Mary said...

Katie, I appreciate the realism you share with us. I think it's important that you know we can hear these things and be strong WITH you. Interesting note -- when my mom's hair grew back after falling out, it grew back thicker and wavier and she was happy! :) AND my dad had your cancer and he's 81. Prayers for you and your boys -- all of them! :) Keep on keepin' on!

Shirley said...

Katie,

You are in my thoughts and prayers. I cannot imagine NOT getting angry at the normalcy that you come in contact with while you are going through this. It looks like you are getting through that and not allowing it to control you every day. You are something Katie! I love your art and I cannot wait to see you create again.

Lots of hugs,
Shirley

Moments by Marla said...

Katie, I have only known you since your fight of cancer has begun, but what I see in your journaling is a very kind and loving person. I am a two time cancer survivor. I didn't journal through my journey with cancer, but I was able to talk to anyone about it. It is so important to share your feelings good or bad. Remember right now it is the cancer and the drugs that are speaking, and not the loving friend, wife or mother you are. Fight it with all you got and never give in. My thoughts are with you and your family.

christine said...

Oh sweetie I wish I lived closer to you so I can come and give you a hug!!! I know this sucks for you but what I am amazed at is how you are able to convey your feelings to all of us. It takes a super strong person to be able to do that honey!!! Your husband probably has the same fears as you do and most importantly he probably feel very helpless that he just can't take it all away for you.
Know that you and your family are in my thoughts and prayers every single day!!!
I check in to read your updates every morning as I sip on my coffee!
Hugs and Love,
Christine Uporsky

Cathy said...

I just want you to know that you and your family are in my thoughts and prayers.

Cheryl said...

I am new to your blog. So sorry yesterday was not a good day for you. Praying today is just right! Your short hair is adorable....just like you! Keeping you and Kevin in my prayers.

Susie said...

You said it....cancer sucks...
There is a Facebook page called Cancer Sucks, which I joined after our nephew was diagnosed with leukemia. I've seen first-hand how cancer affects the entire family. BUT, I've seen it draw families closer together. Fight the disease together.
I SO admire your being able, and willing to share this journey with us through your blog.
Please know that you are in my thoughts and prayers. May God bless you with strength and healing.
Susie

Geny (Mommy Geny) said...

Sure hoping today is a better day, sending you happy, healing and healthy thoughts! {{Hugs}}

Kim H. said...

Sending you postivie thoughts, a big, big hug, and many prayers. I hope your day got better. BIG HUGS!

Sue C. said...

Dear Katie. We don't know each other personally, but we are connected in some weird cosmic way. I'm Sue C. and I live in the SF bay area. About 6 months ago, my husband of 26 yrs was diagnosed with pancreatic cancer. They operated, but couldn't get to it b/c of its location, etc. He has thusfar undergone 2 rounds of chemo and one round of radiation. This cancer stuff sure isn't for whimps, is it????

Anyway.....here is what I REALLY want to share w/ you: You need to know that I am immensely grateful for your posts. (And therefore, lots of other people are too.) As a caregiver it's hard to know sometimes what the other side is like. And I have to tell you, my dh doesn't talk about it all that much. So I read your posts and get some glimpse of what it must be like.

Yes, my life isnt' normal, either is it? I knew that this weekend when I took my dogs to a show and all my fellow competitors (who haven't seen me in some time) kept asking about my dh. It was sure nice to feel all that love....but I have to tell you....IT WASN'T NORMAL!!! And like you, I so wanted it to be.....

Anyway, just wanted to introduce myself and send some internet love, prayers and positive thoughts your way. Fight the good fight.....I just know you have it in you...... I continue to pray for you and your family. Sue C (and the shelties, Rusty and Flash)

Shirley said...

Dear Katie,
How very strong you are. For even as you talk about being angry at the tired, the cancer, the situation, you keep on going. What role model for all of us and your family. There is nothing wrong about being sad and angry. It is very human and to release it is even more cathartic. Thank you so much for sharing with all of us. It is so wonderful that you can share and let us know what your journey is like. It will help those of us who may need your information for our own trip and also it will help us support others who are also receiving treatment. Love you to and your family, Katie, and big big hugs to you!!

Suzi said...

You are saying things that I have said so many times. With the disease I have, I get that over-powering tiredness that makes it hard to think. I can't remember how to do the simplest tasks, like paying bills, etc. Heaven forbid that someone give me a new task. I won't be able to figure it out, and I'll be frustrated and angry, because I know I'm smarter than that! Aargh! And I have a love/hate relationship with my oxygen supply. In our busy household, someone is always stepping on, or tripping over, the hose. Then it yanks on my ears. The portable unit is such a nuisance that I seldom leave the house anymore. BUT, what if I didn't have an oxygen concentrator? I am so thankful it keeps my levels in the normal range and I can function. And I can laugh when my year old granddaughter things it's a rope to climb Mount Gramma! So. . . I hear your complaints about chemo, AND I know you are thankful you have that option. Being sick is a pain, but you will learn so much about yourself, that you are a fighter, and that you are loved, that you are important to so many people. Keep fighting the good fight, Katie, and I will keep praying!

Grandma Nancy said...

I don't know if you have it or can get it, but watch the DVD The Secret. It is immensely helpful and when our son had cancer it was just the thing he needed to see. Love, hugs and prayers coming your way everyday!! For Kevin and the boys as well. They are also suffering and I hope you tell them they have people cheering for them as well. Hang in there, Katie!!

IamDerby said...

Well that sounds pretty miserable, you have every right to be grumpy. I know what you mean about hating your pump. I wear an insulin pump. Every day I get to be reminded of my disease... its totally stupid for me to be angry about it because of this pump thats making my life better...but... well I know what you mean about that. Mine doesnt make a funny noise and it is smaller but it does vibrate all the time and bugs the crap out of me when it interupts my teaching or whatever. I know its not the same, but just wanted to tell you I can relate to that. Hopefully with each day you will feel less fatigued. As to the hair- one of my best friends in high school suffered from alopecia (unexplained hair loss) She lost all her hair, even her eye brows.She wore an awesome bandanna and a really cool black hat. She had to wear it quite a while, several years before her hair finally came back. Anyway I always thought it looked cool. Big hugs to you Katie.

Sue W said...

Hi Katie,
Just read through two of your days. Yes you did look a little apprehensive .....who wouldn't!!! The list of drugs alone is scary!!! But then you smile that lovely smile and you know what ....you can do this.. day at a time. Keep strong Katie, concentrate on the positive. I'm sorry Saturday was a tough day and hope Sunday was much better. We're all with you, willing you along. x

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