"In remission" but...
 

Well friends a few weeks ago now my GP said I could officially say I was "in remission" .... my latest catscan again said all clear except for stable bones.

You'd think I'd be happy, and I am but.... I just seem to have so many side-effects from my medications it makes it hard.... diarroea/constipation, hand/foot syndrome, lymphoedema (arms & legs), weight gain/swollen face from steroids, weeping eyes/dribbling mouth etc etc

I feel I should be grateful seeing these meds are keeping me alive... I think... (combined with prayers) I hate to complain.... but I am!! LOL!!

And now "in remission" Im still getting extra/new pain in my bones. Probably should talk to my GP about this eh?

Thanks for listening to my buts..... Love this site and the folks that contribute.
Stay well friends.
Blessings
Hermiracles

Re: "In remission" but...
 

I know what you mean Hermiracles. It's hard to believe words like remission. My onc has been very hesitant to use it or even NED. I wish he would so I could have some official statement of victory or something, but really I think victory is a day by day thing for us. Today, you are victorious. I am confident you are on a path to getting healthier every day. The cancer is out of the way so your body can focus on repairing the damage from the battle. It will take time, but we'll keep moving forward, day by day. You are a walking miracle!
Congratulations, Celeste

Re: "In remission" but...
 

You have the right to complain whenever and about whatever you want. Or complain about nothing at all! The ongoing aches, pains related to treatment would be enough to make weaker people crumble. For us they are merely battle scars but still worthy of a little bitchin and moanin.

When I get up in the morning, or just from sitting on the couch, everything hurts! I feel/look like I'm in my 80's!

Of course I'm glad to still be here...and glad you are, too!

Re: "In remission" but...
 

Hi Hermiracles!!! You have indeed earned the right to complain!!! Remission is a long hard-fought battle and leaves many scars and reminders! Most of them painful...Put away that mirror (they are mostly all broken and showing us the wrong images anyway...at least for me that is true!!!) and look at those smiling children,and the man in your picture instead. Think how glad they are to have you in their lives TODAY!!! Enjoy remission and all the 'side effects'!! XOX Suzan

Re: "In remission" but...
 

Congratulations on being in remission. You earned the right to complain about side effects. However, maybe some of them will slowly go away in time if you are not taking chemo or other cancer drugs. The main thing is that you are alive and kicking !!!!!!!! Well, maybe not kicking so much, but at least you are moving and that is the main thing. Smile !!

Re: "In remission" but...
 

Hermiracles
You deserve the right to complain...after all you have been through! You have such good news....time to share with the bubbas, time to share with us....even when the symptoms try to keep reminding you of where you have been, look to the future.....and what it holds!

Re: "In remission" but...
 

Any thoughts of reducing your dose of Xeloda to help with the side effects? I have had to do this several times and even the modest dose of Xeloda is still giving me results. Even if you do this just for a while to give the hands and feet and you a bit of a break to recover some.

Staying alive with some QOL is our goal.

Maybe worth talking about with your onc when you talk about the bone pain.

Wishing you continued good results.

Darlene

Re: "In remission" but...
 

Dear Hermiracles,

Congrats on the remission. I'm so glad you are here to complain about those pesky side effects! When we fear we are dying, we don't think about how we feel, we are just concentrating on staying alive. But once that fear subsides a bit, we can take a deep breath and look at our quality of life. Once you reached the goal of staying alive, you want to do something with that life. You want to enjoy it. So naturally you begin to feel all those aches and pains. So to me it's a very good sign that you are complaining. And ofcourse we are here to listen to your grumbling and virtually stroke your hair and say: "This too shall pass. We hear you. We know."

In the mean time, I'll do my happy Dutch clog dance to celebrate your remission.

Love

Jacqueline

Breathe...
 

MARILYN, MY DARLING, MS 'I'M IN REMISSION BUT...'

I WANTED YOU TO KNOW -- WHEN I WAS FINALLY DECLARED IN CAUTIOUS REMISSION BY 2 OUT OF 3 RADIOLOGISTS (2 OF MY 5 ONCS ASKED ME TO BRING MY CTs FOR *THEIR* RADIOLOGISTS TO READ), I WAS ALMOST AFRAID TO BELIEVE. 1,000 WHAT IFs OCCURED.

IN '99, AFTER 9 MNTHS OF TAXOTERE, PUSHING THROUGH THE PAIN FROM MY EYEBALLS TO THE SOLES OF MY FEET, IN EVERY EXTREMITY, THE EXHAUSTION, THE CONSTANT DIARRHEA, THE INCESSANT TEARING THAT WAS AS MADDENING AS THAT WATER TORTURE W/AN RELENTLESS LITTLE DRIP DRIP OF WATER ON YOUR FOREHEAD -- I COLLAPSED.

I SPENT 6 WKS IN BED. I SLEPT ABOUT 20+ HRS A DAY. I COULD NOT MOVE, BUT TO FLEE TO THE TOILET, TAKE A QUICK SHOWER, DRINK THE ESSENTIAL WATER TO STAY HYDRATED AND ALIVE AND EAT SOME MORSELS FOR THE SAME REASON.
I COULD NOT STIR, I SWEAR. I COULD NOT LIFT MY ARM. I WALKED HOLDING ON TO WALLS AND TABLES, IN A KIND OF STUPOR.

I HAD TOUGHED IT OUT, EVEN FLEW FROM FLORIDA TO CALIFORNIA TO ATTEND MY NEICE'S WEDDING (WHICH SHE BEGGED ME TO DO). I WENT, SLEEPING IN THE CAR ON THE WAY TO THE AIRPORT, SLEEPING 5 1/2 HRS ON THE PLANE, SLEEPINGIN THE CAR FROM THE AIRPORT TO THE HOTEL, CRASHING ON THE BED TILL I WAS NEEDED. I REVERSED THIS TO GET HOME. BUT I DID IT. W/A BIG SMILE ON MY FACE. GRATEFUL TO BE ALIVE TO BE THERE FOR JESSICA, A SURROGATE PARENT THAT LOVED HER DEARLY.

THE SIDE EFFECTS OF CHEMO LAST A LONG, LONG TIME. THAT WAS MY REALITY ANYWAY. EVEN YRS LATER WHEN THOUGH IMPROVED I MENTIONED TO MY ONC THAT I KNEW IT SOUNDED STRANGE BUT THE DEEP WEAKENING MUSCLE PAIN IN MY ARMS AND LEGS WAS STILL THERE FROM TIME TO TIME. NOT WEIRD AT ALL SAID MY ONC. OTHER PATIENTS HAVE REPORTED THIS TO ME AS WELL. SOMEHOW, THAT MADE ME FEEL BETTER. MY PAIN WAS VALIDATED AS BEING REAL AND THEREFORE WAS MORE TOLERABLE.

AS I LAY IN BED THOSE 6 LONG WKS, CANCELLING ANYTHING AND EVERYTHING (OR ACTUALLY ASKING PAUL TO DO THAT FOR ME AS I COULD BARELY SPEAK, I COMMUNICATED IN HUSHED WHISPERS HALTINGLY) I USED THE TIME TO MEDITATE. TO FOCUS ON MY BREATH. AS MY MIND WOULD STRAY TO FEAR THAT THIS COULD BE THE END OF ME, AM I DYING?, SURELY I AM REALLY CLOSE TO DEATH, WILL I EVER BE AS I ONCE WAS?, IS THIS PAIN OR THAT A SIGN OF RECURRENCE ALREADY??!!
-- I TRIED TO REMIND MYSELF THAT I HAD JUST BEEN THROUGH A HORRIFIC ORDEAL, THAT I NEEDED TIME TO RECOVER! TO HEAL! THAT I WAS ENTITLED TO THIS OBVIOUSLY NECESSARY/MANDATORY REST PERIOD.

I WOULD BREATH IN THROUGH MY NOSTRILS, HOLD THE LIFE-AFFIRMING BREATH AND CONSCIOUSLY PLANT MYSELF IN THE NOW, THEN GENTLY BLOW ALL NEGATIVITY OUT THROUGH MY MOUTH. I COULD HEAR IT LEAVE MY BODY, FEEL IT AS MY LUNGS EXPANDED. I KISSED AWAY ALL THAT WAS UNWANTED
THROUGH MY PURSED LIPS. THEN AGAIN AND AGAIN, I REPEATED THIS. TRYING TO FOCUS ALL MY ATTENTION ON MY BREATH, AS BREATHING WAS ABOUT ALL I SEEMED CAPABLE OF DOING AT THE TIME.

I BECAME KEENLY AWARE OF MY THOUGHTS STRAYING INTO DANGEROUS TERRITORY, WHAT IFing AWAY AND NATURALLY ACCOMPANIED W/PANIC, FEAR, AWFUL IMAGES OF ME MISSING IN PICTURES OF MY FAMILY. I HAD LEARNED TO BE DISCIPLINED IN MY AWARENESS OF WANDERING THOUGHTS AND MENTAL CHATTER, AND USED TO NOTING THEM AND THE EMOTIONAL SENSATIONS THEY BROUGHT AND RETURNING EACH TIME TO BREATHING. IN. HOLDING. AND OUT. LETTING GO... PATIENTLY, PERSISTENTLY, DILIGENTLY.

I WOULD NOTE A PAIN IN VARIOUS BODY PARTS (LIKE MY EYES FEELING LIKE BROKEN GLASS WAS STREWN ON MY EYEBALLS, FOR EXAMPLE -- TAXOTERE MESSES SO WITH OUR TEAR DUCTS, MUCOUS MEMBRANES EVERYWHERE, DRYING THEM UP LIKE DESERT SAND). MY NOSE HURT FROM DRIED MUCOUS. MY VAGINA. MY SKIN COVERING MY ENTIRE BODY, BEGGING FOR MOISTURE. I WOULD NOTICE THE PAIN, BE COGNIZANT BUT I CHOSE TO PERCEIVE IT AS A PASSING PHASE I HAD TO ENDURE. PART OF THE PROCESS OF GETTING WELL. RECOVERING. HEALING.

AT TIMES I WOULD OBSESS ABOUT THIS OR THAT PAIN. FIGHT OFF IMAGES OF CANSER RECURRENCE AS THEY SURFACED ALONG W/FEARS OF HAVING TO LEAVE THOSE I LOVED. FEAR LOOMED OVER ME AS I LAY IN MY BED.

SLOWLY I LEARNED TO JUST *WITNESS* THE SENSATIONS WITHOUT JUDGING THEM. I BECAME AWARE OF THE FEAR BUT DECIDEDLY CHOSE NOT TO *REACT*. BECOMING THE WITNESS OR OBSERVOR IS KEY, I THINK.

AWARENESS BECAME LIKE A BEAM OF LIGHT WHICH I COULD DIRECT. I WAS BECOMING EMPOWERED.

I was no longer my self, transcending into becoming my Self. We have to learn to ditch the small self!

In doing that, I was uniting w/my Spirit. I began to stop feeling apart from the world. More a part of All. I felt one with the All, one with everything that exists, one with infinite Spirit.

In a case of mistaken identity I had been often thinking *I* was The Voice In My Head. That is the little self. It is the part of us that spends all day judging, being critical, blaming, full of resentment and as scared as the small child we once were.

It keeps us feeling separate and lonely. Uniting with your Spirit, is tapping into the divinity within yourSelf. We must learn to transcend the small self and rediscover our Truest Selves, our Supreme Identity. After this comes Enlightenment, rapture and serenity. Life becomes transformed. "Forgetfulness of self is remembrance of God", as many traditions believe. It is a part of the perennial philosophy. It is a breakthrough. The undoing of the habitual tendency to create a separate self where there is in fact only vast, open, clear awareness, as Ken Wilber so brilliantly writes in Grace and Grit.

Our true nature is Pure Presence, not everlasting but prior to Time. It is a timeless Now. And this brings an end to suffering. Not that you no longer feel pain or anguish or fear or hurt, but that you no longer feel threatened by the existence of such things. You become The Witness more than the one suffering. Wilber speaks of this attainment as ' a profound relaxing and uncoiling in the heart'. No matter what, no earthly matters affect our real Being. The person then possesses 'peace that surpasseth understand'.

A desire to help all others who suffer overcomes us at this point in time. Mercy, compassion, love, generosity and gratitude come together. Love your neighbor as your Self!

I love you Marilyn (Hermiracles). Your buts and all. Listen to your Inner Voice. Meditate with passion. Remember -- EVERY THOUGHT IS LIKE A PRAYER AND EVERY PRAYER IS A POTENTIAL MIRACLE.

Let your Inner Voice guide you, strengthen you, nourish you and invest its power in you.

You are in a process of recovering. Healing. Grant yourSelf this time. You have been through so much! Free yourSelf of your separate self. I stand with you. I believe we all do. You can do this. You will do this. Sending a giant hug to you way down under. http://cdn-cf.aol.com/se/clip_art/gstres/thghts/smile

Andi






Andi

Re: "In remission" but...
 

Wow Andi
I read Marilyns post earlier and it really struck a cord with me especially the ongoing struggle with side effects even after a bout of treatment is finished. I then read yours about taxotere which so eloquently voiced my own experiences over the past 4 months with taxotere.
Nothing in the world prepares you for this cancer journey. I recently told my Minister that I now truly believe there is a hell on earth! Perhaps the worst part of the hell is being stalked by a background ofconstant fear that sneaks up when you least expect it, then bang the whole reservoir of past fears floods back with vengence.
I believe it 's possible to gain mastery through meditation over fear and negative voices and messages in your head but I think this, like most things, requires perseverence and practice. I'm not sure that I have got near yet but I keep on trying!
Love Ellie

Re: "In remission" but...
 

Boy, I think if I would go through what you have, I'd be ready for a good old fashioned PITY PARTY!!!!! For what it's worth, I think you are doing amazingly well. Hang in there. You are loved and valued. This cancer lark just feels so damned unfair sometimes, doesn't it?

Re: "In remission" but...
 

Hermiracles my dear, you have every right to vent and worry. You are an amazing woman, keep the faith...

from your fellow commonwealther,

all the best
caya