Chemo June 2010

I guess when I think of the word survivor I think more about toughness.  I think about how we have survived such intense, frightening, treatment and surgery for months and how we continue to survive the indignities and pain from side effects that won't go away.  I think about how we get up each morning and make a life for ourselves and our families even when we are filled with fear.  I think that all of us survive on our own island now.  We have been ship wrecked together and are making a strange new life for ourselves.  Supporting each other and teaching each other.  That is how I see surviving.

What I would like is to be FREE of cancer.  To really think, feel and know in my heart of hearts that it truly is gone never to return.  To be freed from this burden of worry and what ifs to be able to take a deep breathe and get on with the rest of my life.

Isn't it nice to be able to hash things out with your girlfriends? We have been through 'thick and thin' (I am now a lot thicker than I am thin thanks to steroids and inactivity, plus that chocolate keeps calling my name) and we're still coming together to discuss out feelings, our hopes, our fears, our triumphs and our disappointments, our delights. I really value these friendships more than you will ever know.

Maybe the whole thing about being done with cancer or being done with this cancer is just as simple as DMom's son says it is...we have taken care of it and it's gone. Or we hope it is. Dwelling on the 'what if's' is what gets me in trouble. It's gone for now. Hoping it never comes back...like the bad penny or the bad boyfriend (or Richard that rat bastard may he rot in hell)...something we never want to see or hear about again. "Out, out damn spot..., out, out damn cancer." We worry but we try not to and we try especially hard not to show people around us that we are still fearful. So we tell each other and we feel better. At least I do, knowing that I can talk it all out with you.

So tell me, did anyone ever figure out what date the 'cancerversary' is and why in heck it's celebrated? I was told last year on March 11th that I had a malignancy. The radiologist wrote that on the mammo/ultrasound report and I had to go to my primary nurse practitioner to hear the words. So I keep saying that was the date of discovery, a good 6 weeks before the biopsy and 10 weeks before the surgery. What date is celebrated and why? The day you were told so you could get on with the fight? The date you had the surgery to get the damn stuff out? Does it matter? Ah, but I digress...I guess I just don't get the celebratory aspect of any of this. The only good thing that I think that's happened to me through all this is you.

Tina, yes, I have had Herceptin from the beginning and will have it for 1 year so should be done in this June. I hadn't had any real trouble other than more fatigue and the mention that it will make my hair regrowth slower (dang) but yesterday they phoned to say that the bloodwork drawn before last week's infusion shows I have developed a low potassium, in spite of taking extra potassium tablets every day.  Could be the Herceptin, could be the freaking thyroid thing they're 'watching'. The fatigue is real because of the decreased ejection fraction. Mine was at 50 back in December. I am thankful everyday that I get to have Herceptin but I'm respectful of it's potential dangers, too. Nothing is perfect, is it?

Wishing everyone is feeling a bit more hopeful now that there are some signs of Spring! Hugs all around. Bon

Bon-  Bless you. You have me laughing all over again!  I guess I find you so funny because you seeeem to be such a lady, so well spoken, supportive and polite.  When you let your "Richard the rat may he rot in hell" fly,  I can see that you can let it rip!! 

About the whole survivor label.  Don't get me wrong, I have my dark days, fears and doubts just like the rest of you.  Then I remind myself that there is only so much I can do to prevent recurrence (or getting hit by a bus, eaten by a shark, swallowed by a sink hole).  If I allow fear to paralyze me, I will be wasting my great chance at enjoying this wonderful life.  That would pi$$ me off even more than cancer.

Well said ladies! Thank you so much for sharing your deepest and most meaningful thoughts with me.  I know I am not alone in this struggle.

Love to all, Mimi

I love having this place and you ladies to share with.  You "get it" and many people don't. 

 I recently talked to a young woman who's Aunt is having chemo.  She thought the Aunt would be knocked out and put in a machine for chemo.  YEESH !  She and other people who were talking to her kept saying how they would give her Aunt jobs and things to look forward to so she would feel better.  I tried to let her know as gently as I could that being given things to look forward too sometime feels like pressure to a chemo patient and attitude doesn't necessarily cure you.

Dear Mity,  Yes I do have odd pains and aches and still do not feel like my old self.  I am back to working full time and everyone says how good I am doing but sometimes I wonder.   I definitely have less energy than I did and I have new health issues also from chemo but I guess that is to be expected.  I am taking femara for hormone blocking and that has added some SE's too.  I am thankful to be done with chemo and rads but are we ever done battling cancer,  I DON"T THINK SO!!!!  I do not think any of us will ever be just like we were before either mentally or physically but I am trying to move on without cancer being the center of my world.  I pray it will never be a major concern for any of us again!!!!!!

The latest in the Julia saga is she thinks we are all on a sitcom.  We sit and watch TV together and she tells me about who is who and what they are doing.  I have to laugh and just say how good we all look, just like movie stars.   She also thinks there is a buzzard following her around every time she leaves the facility to go any where.   She says he is following her to pick her bones.  I don't know where she gets these ideas.

Ginny...thanks for the Julia update. God bless her and you. It is really heart warming to hear about her latest news and to know that you are taking such good care of her. Hugs...Bon

Mity-  Your hair is growing!   Nope, still not "normal", wonder if I will ever be.  I guess we all have to adjust to our "new normal".  I have aches and pains which make me scared and wonder.  I like the advice about giving any pain 5 days to pass before going to a doctor.

Bon-  I have a feeling your doctor knows.  My RO told me it could take 6 months after completing treatments to get my energy back.  I find cat naps really help.  I also started taking the supplement Melatonin at bedtime.  I am out like a light and usually sleep through the night.  Before, the night sweats and racing brain kept me up and down all night.  A good night's sleep works wonders.

Gin-  You know Julia is right!  This IS a bloody soap opera!  Who would believe all that we have gone through????  

Mity- I am in the same boat as everyone else.  Mild pain of some sort everyday.  Could be mouth, chest, lower back, rib cage, legs etc....  I try to walk 30 minutes or do stretching and strength training exercise everyday.  I am also working outside the home.  But, I am still frequently exhausted.  I don;t fall asleep during the day like Bon.  But, I do have many days when I "bond' with the sofa the minute I get home and stay there until 8pm when I decide it's OK to go to bed.

Like Dmom I have trouble sleeping through the night even with medication.  I think I'll try melatonin.  Like TMarina I have had migraines which have bothered me on and off throughout my life.  These post chemo migraines are pretty weird as they include visual disturbance.  Like Gin I am trying to figure out how to NOT make cancer the center of my world either.

I still have changes that I see as improvments everyday.  My armpits just started sweating again which is sort of funny.  The arthritis ( mild) which I have had in my hands and feet pre cancer seems to be back and I realize that also may be a good sign as it means the neuroapthy is lessening.  And of course there are wonders of menapause.  I have decided I am my own personal weather system. Sometimes freezing, sometimes boiling, always changing.

Gin, love your Julia stories.  Always wondered why some people with dementia were angry and have always thought God should make dementia a happy experience.  If your gonna' be out of your head why not be in a happy place !  Glad Julia is still happy and you can enjoy her.

TMarinna-  As you say people's ideas can be pretty strange.  Who knew I could be seen as a font of knowledge !

Ladies-  Thanks for being my font of knowledge !

Love Ya, Joan

JVF, congratulations on the sweating armpits.  We have to be proud of what we can. Sometimes I'm proud just to be able to climb into our (unusually high) bed.

Toni30, glad you are feeling well. Keep up the exercise.

Hi all - I've missed being here and it took me a while to catch up on the latest.  The reason I asked about being a cancer survivor is because I don't feel like one yet.  Yes, I did survive the tx (just barely), and still have lingering SE's. But I haven't had any tests or scans yet to determine the effectiveness of the tx.  Assuming my scans are clear when I do have them, I don't feel like I can breathe a sigh of relief just yet.  There may be nasty cancer cells flowing in my blood that just haven't attached themselves to any organs.  Yet, I'm not paranoid about it, although I remain apprehensive.  I guess I need to accept the fact that I will probably never rest easy and be absolutely confident that the cancer is gone.  Like Bon and some others, in five or ten years when I have not had another occurrence of cancer, I might say the words, "I'm cancer free."  But, only whispered, of course.

I went to see my orthopedic last week about my joint issue.  Because my pain occurs bilaterally (both knees, both hips, both shoulders, both feet, both hands), he is concerned that the chemo may have triggered rhematoid arthritis.  He wants me to have some blood work done and I need to schedule that this week.  I pray that it isn't.  Someone told me that a gulten free diet has been recommended to people who have rhematoid arthritis.  I am going to research that and look into it.  It is getting so bad, I can hardly walk.  Soon I'll need a wheelchair.

Sherry,  I'm sorry you are having such a rough time with your joints. That sounds awful! Let us know what the doctor says.

Each morning, I realize I am  a step closer to feeling normal. A wee bit better each day.

hi girls, sorry to be away, my sisters lump was nothing they said, but beings what has happened to me they will biopsy it. The RO said if it was his family he would not even do it.but for peace of mind he will do it!!!

 ok ive been in a strange place, i have my appt with UCFS thursday. still dont know about the lump. i feel like im starting over again, maybe because i have a new ONC and have to go over everything again, im scared and not sure why? could it be that im feeling like i have to remember everything to this new ONC? i dont know, maybe im being nervous for nothing, i feel like i might walk in there and totally break down and cry, I hate this so much!!!! im doing good then my mind takes over i guess. the only time i feel really safe is when im on here with all of you.. ill go back a page and catch up now on how we all are doing

love you all

Chey

sherry-  Oh my!  Step by step, my friend.  I am hoping you get good news about the joint pain.

chey-  Great news about your sis.  I totally understand that you would want to make absolutely sure with a biopsy.  About your nerves, totally, totally understandable!

I actually went to my new MO today for my first appointment and to get a second opinion.  I was so nervous.  I felt like I was reliving my original diagnosis all over again, not to mention my appointment was two hours delayed!  I liked her a LOT.  She spent nearly an hour with me and didn't dismiss my concerns.  She actually has me reconsidering taking the hormone blockers.  As Tamox is contraindicated for me because of clotting disorder.  She wants me to have a oopherectomy in order to take Arimidex.  She actually shared that she just had one herself and showed me her scar!!    I wish I could be at peace with this Arimidex decision.  Medically and logically I know it is important, probably the most important aspect of my treatment to prevent distant recurrence.  WHY am I having such a hard time with this????