Meatloaf!!!

So I know it's been awhile... I've had a rough couple of weeks. Was hospitalized a couple of weeks. Couldn't really move around by myself. But with PT and OT doing much better! I'll have a brain scan next week- so we'll see. Everyone has been terrific, esp my parents and Jason -so loving and caring! It's hard to stay motivated but you help so much! They keep me going and keep things in perspective !

And the meals- I didn't realize how much they help! You guys are terrific! And the kids are loving them- who knew they liked meatloaf? Thank you for taking the time to think of us!

"In the end only 3 things matter : how much you loved, how gently you lived, and how gracefully you let go of things not meant for you. -" Buddha

Finally ins approved the increased dose of IT herceptin and I got it yesterday! We' ll see if it helps! Then last night I had a repeat brain MRI - which either it's still just swelling from the radiation or bigger tumors consequently I just had one 3 weeks ago and to the docs wasn't so bad - we'll see... I read the results myself today and I can't tell- looks like some is worse with swelling but some better- the doctor will call with what's next!

Thanks to my good friend Leann.damico for lending me a 4 point cane! And Aunt Kathy for lending Me a scooter for Disney!  I wouldn't be able to get around if not for Jason and my parents so I'm so grateful! I also so appreciate my doctors who really care about me and then of course all of you! My work is incredible and so supportive - I'm so very lucky and appreciative.

My favorite song/ "Somewhere Over The Rainbow" lyrics JEWEL LYRICS

Play "Somewhere Over The Rainbow"

"Somewhere Over The Rainbow"

Somewhere over the rainbow

Way up high

There's a land that I heard of

Once in a lullaby

Somewhere over that rainbow

All skies are blue, oh

And where dreams

That you dare to dream

Really do come true

Someday I'll wish upon a star

And wake up where the clouds are far behind me

And troubles melt like lemon drops

Way above the chimney tops

That's where you'll find me

Somewhere over the rainbow

Bluebirds fly, oh

If birds can fly over the rainbow

Why, then why can't I?

Someday I'll wake and rub my eyes

And in that land beyond the skies

You'll find me

I'll be a laughing daffodil

And leave the silly cares that

Fill my mind behind me

Somewhere over that rainbow

Bluebirds fly

If birds can fly over the rainbow

Why, then why can't I?

If happy little bluebirds fly

Beyond the rainbow

Why, oh why can't I?

Getting back on balance...

So this last week I've been so dizzy and off balance, literally, it's unnerving to me. I need help to walk to the car, I fell 4 times, not bad falls but enough to startle me and Jason, thank Goodness the kids did not see, but I think Tom's onto me. I'm best just sitting up or laying in bed. And I'm so hungry again. Dr. Glass wants to increase my IT hereptin but the ins. company is taking forever to approve it, apparently I'm at the top dose. So we're just waiting. He did give me a referral for Physical Therapy for a cane... does anyone know of a good place around me? Problem is I have an HMO Keystone Health Plan East plan and I think I'm capitative to Magee.

So I feel stuck inside but at least I can work on the computer for a little while..... I'm going to do what I've been doing, keep swimming and see where this goes... hopefully I start to feel better, I don't like being so dependent!

Some of the quotes that give me strength:

"Live life as if everything is rigged in your favor". rumi

"Life is too ironic to fully understand. It takes sadness to know what happiness is. Noise to appreciate silence and absence to value presence".

Finding your path…

I had the repeat Brain MRI 9/3 (last week), I have mixed feelings, first I read the report on my own and was disappointed as the results read "mixed response to numerous intracranial metastases but overall increased FLAIR/mass effect in the posterior fossa compared to previous study". And I got depressed until I met with my doctors and after looking more closely at the results it appears that my lesions are "minimally worse but some minimally improved but the majority are the same." Great- so what does that mean? It means I keep swimming! The good news is that the lesions are about the same, and still no really bad side effects, I still feel relatively fine, beside being tired and the occasional headache. My neuro-oncologist will double the dose of my IT herceptin from 20 to 40 so that may help. I'll still get my other IV meds and keep taking one day at a time. I have to admit it is tiring but I've got to just keep in the moment. My yoga instructor posts to FaceBook each week and this is what he posted last week which made perfect sense to me.

“Your life is a sacred journey. It is about change, growth, discovery, movement, transformation, continuously expanding your vision of what is possible, stretching your soul, learning to see clearly and deeply, listening to your intuition, taking courageous challenges at every step along the way. You are on the path… exactly where you are meant to be right now… And from here, you can only go forward, shaping your life story into a magnificent tale of triumph, of healing, of courage, of beauty, of wisdom, of power, of dignity, and of love.” ~ by Caroline Adams


So I'm carrying on, still teaching, still discovering, still swimming, and grateful for all I have, 

Love to you and may you find or stay on your path. 

Dr. Seuss's life lessons

So I've been swimming and taking one day at a time. I'm getting treatment every Wednesday and feel pretty good. Depending on the week I’ll get Herceptin, Perjeta, Zometa, Intratheical Herceptin, and Abraxane. I’m tolerating them, just tired and occasional headache. It seems when I’m more active and doing things, I don’t feel as tired vs. just laying in bed watching Family Feud or Tree House Nation! I don’t know when I’ll be “scanned” again, kinda don’t want to know. I just take one day at a time and am thankful for this day that I’m able to function and get out of bed. I’ll probably get a brain MRI in a couple of months.

I learned last week that it really is all relative, and how we handle things. I was waiting for the elevator at the infusion center, and started to talk to this elderly African American lady. We were talking about how the medications really dry our skin (I can draw on my legs they are so dry!) I’m thinking she was going where I was going. But I was wrong she was going to Rothman Institute that is in the same building. For those of you who don't know Rothman, it is orthopedics. She shared that it was her “darn knee” then started to cry. Mumbling she can’t believe how angry she was about her knee when she couldn’t imagine what I must be going through (I looked so young). I told her not to cry we all have a story. Then the elevator doors opened and I stepped out. I’ve thought about this woman a lot since then, what she is going through, does she have support, can she pay for her treatment. I feel so grateful that I have all of those things.

I’m feeling well enough that we are going to visit the Poconos for a couple of days. I really have enjoyed our trips to the Poconos so went on expedia to find a last minute bargain. We’ll go to the resort pool, bike or hike, tree climbing fun, hit our favorite place to eat- Barley Creek Brewery and take it easy! Looking forward to it.

My quotes for this week are from Dr. Seuss who is a smart man. Ella has been reading me his stories. Not only are they clever in rhyming they have hidden meaning! I’ve always appreciated his books and even had one of his quotes hanging in my dorm room in college (next to Where’s Wally).

Thank you as always for your love, well wishes and friendship. "If you want to go fast, go alone. If you want to go far, go together." Xoxoxo, Kellie 

Free from fear.....

So I have crappy news as an update this time. Although the intrathecal (IT) herceptin is going well I've been experiencing an increase in shortness of breath with increased movement for the past month or so. I had a chest X-Ray that showed the cancer is back in my lung.... So today I started "regular" chemo (Abraxane IV) which is given every week, but since I'm there for the IT injection it's fine. I just keep swimming and am thankful that I still get around well, have a good quality of life and most importantly can still take good care of my kids (thanks to Jason for stepping up and doing extra and of course my parents too!).

I'll have an echocardiogram scheduled Monday as a routine check of my heart function while on these medications, will continue with my treatment regimen, and keep Faith bigger than my fear!

"She was unstoppable. Not because she did not have failures or doubts. But because she continued on despite them" Beau Taplin

"Becoming fearless isn't the point. That's impossible.
It's learning how to control your fear. And how to be free from it."

Still swimming….

 I know I’ve owed you an update for a while, two things happened that made me procrastinate… I was feeling very tired from the radiation treatments (I know its been a while since I stopped but radiation effects happen after) and I lost another good friend and colleague to this terrible disease. She was a sounding board, a cheerleader, and I admired how she tackled her disease and life! We would talk about our journeys and how we just had to keep swimming. I’m sad now but know she would want me to keep moving forward, treasure her memories but keep living! She was an incredible lady and I will always hold her in my heart. 

So, here I am, a little sad, but still swimming… maybe a little slower but still moving forward. I had my first intrathecal infusion of herceptin to the brain on Friday and it was uneventful. The doctor just injected a small amount and will titrate it to the full does next week. I will go every Wednesday moving forward. I thought I felt better Saturday but it could be psychosomatic. I know there will be a “re-scan” but don’t know when, probably 6 weeks or so. And I continue to get the systemic Herceptin, perjeta, zometa to my regular port every 3 weeks. I stopped the steroid so my appetite is back to normal and I lost 3 lbs! I know so silly to worry about weight of all things!

So in memory of my good friend: 

Native American Prayer for the Grieving

I give you this one thought to keep-

I am with you still- I do not sleep.

I am a thousand winds that blow,

I am the diamond glints on snow,

I am the sunlight on ripened grain,

I am the gentle autumn rain.

When you waken in the morning hush,

I am the swift, uplifting rush of quiet birds in circled flight.

I am the soft stars that shine at night.

Do not think of me as gone-

I am with you still- in each new dawn.

Shake it off…

I had my brain MRI scan last Monday (5/11/15) and although it looked “better” than last time it still showed those darn tumors. Some disappeared, others shrunk, but the point is there are still too many. Not real big yet so blood is still getting around them. With time, radiation will still have a positive effect but the doctors (and I) want to get started with the target chemo to the brain (i.e. herceptin.). So I’m scheduled to have a brain reservoir called of all things an- ommaya (click on link to learn more): http://healthlibrary.stanford.edu/patient/ommaya.pdf

on Thursday . 

They will place it on top of my head. It usually is an outpatient procedure and I’m told “no big deal”.  This is what I wanted so I’m fine with it, but anytime I go for surgery I get funny (and esp. brain surgery). But the brain does not have pain receptors so will be no big deal.

Then once I heal they will start intrathecal herceptin (or methotrexate which is a common chemo IV infusion used). I prefer the herceptin but we’ll see. Doctors have used methotrexate many times but not so much herceptin. Neither really cause any side effects although he said some people experience nausea.  

I know it’s serious to get started as the neurosurgeon I met with wanted the ommaya placed this week… but I’m all for it cause maybe intrathecal herceptin will be as effective as the systemic (through my body) with none to little side effects and I’ll have a great summer! The doctor and nurses are amazed at how “good” I look and my upbeat outlook. The nurse mentioned the only side effect I complained about, as written by Dr. Fellin in my chart, was weight gain (haha yes, the only thing I am complaining about is my 15 lbs weight gain while on the steroids!) Well, as you know you gotta just keep swimming. Cause you never know what tomorrow may bring. Taking one day at a time has served my well.

My good friend, who sends me encouraging cards each week, sent me this parable. It is such a coincidence because Aesop’s Fables is my favorite- I love a good story with a message. Hope you do too!

Thank you for your continued love and support… I’m so grateful for the awesome friends and family that shower me and my family with concern and prayers.

The Donkey

One day a farmer’ donkey fell down into a well. The animal cried piteously for hours as the farmer tried to figure out what to do. Finally, he decided the animal was old, and the well needed to be covered up anyway; it just wasn’t worth it to retrieve the donkey.

He invited all his neighbors to come over and help him. They all grabbed a shovel and began to shovel dirt into the well. At first, the donkey realized what was happening and cried horribly. Then, to everyone’s amazement he quieted down.

A few shovel loads later, the farmer finally looked down the well. He was astonished at what he saw. With each shovel of dirt that hit his back, the donkey was doing something amazing. He would shake it off and take a step up. As the farmer’s neighbors continued to shovel dirt on top of the animal, he would shake if off and take a step up.

Pretty soon, everyone was amazed as the donkey stepped up over the edge of the well and happily trotted off!

Life is going to shovel dirt on you, all kinds of dirt. The trick to getting out of the well is to shake it off and take a step up. Each of our troubles is a steppingstone. We can get out of the deepest wells just by not stopping, never giving up! Shake it off and take a step up.

Remember these five simple rules to be happy:

1)    Free your heart from hatred- forgive.

2)    Free your mind from worries- Most never happen.

3)    Live simply and appreciate what you have.

4)    Give more.

5)    Expect less. 

Looking forward….

Okay, radiation was not so bad this time, just a big drag having to get zapped everyday. But all told, I did very well… minimal side effects (really just tired and hair loss).  I did so well that they gave me 2 extra doses (which ended Tuesday). Typically, the effects of radiation take effect AFTER… so I was bracing for the grogginess, tiredness and apathy… but so far all I am is just a little tired.

So next step is repeat a brain MRI on May 11, see the onc neuro specialist on May 18 for discussion of placement of a brain reservoir (which will be an overnight procedure). Then, the starting of weekly Herceptin brain infusions (along with what I’m already getting every 3 weeks- systemic herceptin and zometa.  They say this does not hurt and had no side effects, so I’m excited to get started! Since the by mouth pills (Xeloda and Tykerb didn't really work beyond giving me bad diarrhea, they stopped that and I’ll go back on IV Perjeta with the Herceptin).

So, I have a plan, feel pretty good am just going to keep swimming. This is my favorite time of year… going into summer so I’m excited for a great summer!!!!

We had a great time in Florida… can’t wait to go back next year! Here is my favorite pic of Tommy and Abbie playing way out a the sun is shining through the clouds.

“Do not look forward in fear to the changes in life;

rather look to them with full hope as they arise.

God, whose very own you area, will lead you safely through all things.

And when you cannot stand it, God will carry you in his arms.

Do not fear what may happen tomorrow.

The same everlasting Father who cared for you today will take care of you then and every day. “

Thank you, as always, for being interested, for your love, support and prayers. You are my rock and I am internally grateful~ Kellie

Couldn't even procrastinate when I tried! (Living in ignorant bliss - ummm must not be for me.)

So just 4 days after postponing my MRI I started with headaches- yes "those" type of headaches... I knew what they were, my oncologist knew what they were and the brain MRI confirmed it- the lesions were there...Some a little bigger… some new… some gone. So I saw the radiation oncologist and Neuro oncologist and have a new tx plan.

I'm getting full brain radiation again .. start tomorrow for 10 treatments... Then intrathecal Hercepton (direct to the brain chemo), First delivered via spinal tap then a catheter to to brain (once my brain "settles") which I'll get every week... I actually feel great and glad it was caught early enough... Dr Fellin prescribed decadron (steroid) right away and that has helped with the swelling so thankfully no headaches! (Just eating).

I've always just wanted the intrathecal hercepton as I think that is the only tx that has a chance of working longer term with minimal side effects. This is the last time I can get whole brain radiation so moving onto brain herceptin makes sense! I'll still also need the IV version for my body, but maybe if the intrathecal Herceptin works, I'll stop the PO chemo drugs.....

So I'm still swimming, hold faith tight, am grateful for your love, support and prayers. I do have Faith that everything is going to turn out the way its supposed to be. I know you want to ask what do I need .., and it means a lot... But we are good right now... The one thing that you can do or be ready for is be a listener - whether your daughter or son is a good friend of the kids, or your a good friend of Jason or my parents or family... Be available, willing, and encouraging to let them talk... And show them how much you love them.

I have to admit that I love your blog comments more then I thought I would... It gives me comfort and makes me smile... The issue is how hard it is to post ... I think you need to sign up for a gmail account to post- maybe someone who has figured it out can post directions !

Here is a favorite passage from a book that has helped me to cope...called To Heaven and Back.. By Mary C Neal, If you are suffering loss, or ever had, I highly recommend this intelligent look at Faith.

So make your "string" contributions wonderful and be kind to each other!

The power of procrastination…

So a new thing for me is procrastination... was never really a procrastinator, always felt if something had to get checked off my ever popular "to do" list then “git er done”. My schoolwork was always early, my work work was done as soon as it was assigned, I finished my doctorate in 3 ½ years (which believe me is a feat in and of itself), the kid’s bags are packed the night before school but I find myself in a new world now that I have terminal cancer. Nothing seems so important to rush to "git er done". I have a new freedom now, like a weight has been lifted. I do not see the urgency so much, and I look at its importance and am more discerning what I get upset about (or get involved in). My therapist and I talk about death all the time, she is the only one I can talk freely with about this. Here is news to maybe some of you- we are all going to die. It's a fact, an inevitability. What I face you all will face sometime in your life (hopefully much much later though!). Once you come to terms with it, accept it for what it is, it opens up a kind of freedom that I never had before. I used to worry about EVERYTHING, now,  not so much. Nothing is as big as death. And in the big scheme of things most is insignificant. It’s how we treat each other, the gratitude that we hold in our heart that matters most.

So back to procrastinating, per my Oncologist suggestion, we are pushing back my MRI brain scan to May (I was to have it Monday). The rational is that since I have no obvious side effects (namely headaches) then lets “just keep swimming”. I like this no scan unless we have to approach. Scans are scary, they show the lesions, where they are, how many, how big and it freaks me out regardless how I’m feeling and doing. So since I’m feeling good, I’ll just enjoy a few more weeks in ignorant bliss.

Regarding my treatment plan, I’m still tolerating the PO chemo meds, receive IV herceptin and zometa every 3 weeks and just had an echocardiogram that was fine (it's to make sure the Herceptin has not done damage to my heart as it can cause heart failure, we check every 4 months).

We returned from Southwest Florida last week and I can’t get seem to get warm (despite the climbing temperatures)! We had an incredible time, especially the gorgeous beaches, awesome 80 degree weather and spending time with family.

Here is a pic (can't tell but that is Abbie and Tommy playing in the water):

“It all begins and ends in your mine, what you give power to has power over you.”

Happiness is the way.

I hesitate to even write this, but want to update you all on where I’m at. The results from my 1/27/15 MRI were mixed. I know right? I feel terrific, how can they “be mixed”. Apparently some tumors shrunk while others grew! Yes tumor”s”… I always heard I had 15 or so but never really saw them, out of sight out to mind. Well, I’ve seen them, the Fellow brought my brain up on the computer and compared my last MRI scan to this one- pretty neat if it wasn’t MY brain with 15 or so white spots scattered throughout. Kind of freaked me out. I knew there was a reason I kept saying I didn’t want to see the scan. Anyway, it’s perplexing to everyone, including the “brain specialist” who also read my scan. So the consensus is to continue what we are doing and instead of re-scanning in 3 months they’ll rescan in 6 weeks then we’ll decide what to do if there is more “growth”. Rational is to give the radiation more time as well as the medications (that I finally titrated to the full amount without any diarrhea!)

UGH … just when I got my mojo and energy back I get hit with this; but I have put things in perspective and remembered my motto- “take one day at a time and live in the moment.” I mean, look how far I’ve come… I could have given up so many times: when I was first diagnosed with Stage III aggressive breast cancer, after I learned it was showing up in my other breast so needed ANOTHER mastectomy 1 year after the first, when I learned it spread to my lung, liver and most large bones including spine, or when I was hospitalized with severe headaches to learn it spread to my brain. I kept soldiering on and eventually got my mojo back each and every time! I’m not in denial, I know this will not end like the movies and books I only read (with a happy ending), but like Stuart Scott said “you beat cancer by how you live, why you live and in the manner in which you live”. He’s so right! My therapist and I were talking about what drives me to keep getting back up, and I could not come up with one answer- it was everything swirled into one terrific life filled with terrific people!

So in celebration of living, we are going to Florida to visit my parents in Fort Myers. We will be staying on the causeway that enters into Sanibel Island (a place I have always wanted to visit). To get the best deal, and schedule around  my treatments, we do need to pull the kids from school for a week- but it will be so worth it to feel the sunshine on my face, smell the cool breeze and feel the sand between my toes!

Please keep me and my family in your prayers and pray for shrinkage!

There is no way to Happiness; Happiness is the way. 

Three little birds🎶

I'm moving  along, taking and titrating my meds, received my infusion last Wednesday, saw Dr Fellin, everything seems stable. I'll have a repeat brain MRI 1/27/15. The good news is that I feel terrific! Even as my bald self (which I'm told may not even grow back :( I've kept up with my exercising and yoga and resolve to keep moving.    I love to listen music while walking and yoga; and I find the music just as helpful! Something about when a favorite song comes on that instantly lifts your spirit. I also attribute my new found wellness to all of you, I'm so grateful for all your love, support and prayers.... You showered me with kindness that holds a special place in my heart... From delicious meals that kept my family well- fed, cards with inspirational quotes, gifts, money, carpooling rides for the kids, doing my bottomless pit of laundry, taking my kids all day so I could sleep, rides to the doctor, delicious treats, uplifting get well messages, help with my courses and committee work and most importantly your prayers. I'm not pretending that it's all over, I'm just grateful that today I feel terrific.

I often get questions "how long will the medicine work" or "what about the side effects of those powerful medications" and my reply is always "I'm just happy that today the meds are working, I feel terrific and don't really want to know (why worry more)." The future is unknown, for all of us actually, so I'm just going to continue taking one day at time and live in ignorant bliss. I have come to peace with my mortality, and wish/ hope/ pray that my days are mostly good ones in which I feel well, normal, without pain or disability. You don't think about health and wellness until you don't have it anymore. I'm so fortunate (Blessed) to have regained it. 

 

Thank you to my cheerleaders, always  sending good mojo my way, keeping me in your prayers, sending your love- it makes all the difference in the world! 

Love this song by Bob Marley (I sing it in my mind often):

"Don't worry about a thing,
'Cause every little thing gonna be alright.
Singing' "Don't worry about a thing,
'Cause every little thing gonna be alright!"

Rise up this mornin',
Smiled with the risin' sun,
Three little birds
Each by my doorstep
Singin' sweet songs
Of melodies pure and true,
Saying', ("This is my message to you")

Singing' "Don't worry 'bout a thing,
'Cause every little thing gonna be alright."
Singing' "Don't worry (don't worry) 'bout a thing,
'Cause every little thing gonna be alright!"

And these quotes...

Wherever you are, God put you there for a reason. Bloom where you are planted! 

There are two ways to exert one's strength: one is pushing down; the other is pulling up. 

Why not exercise ?

For my tx update - I saw Dr. Fellin Christmas Eve, had my IV tx with Hercepton and Zometa and still working on titrating up the chemo meds (tykerb and Xeloda). Dealing with diarrhea but otherwise feeling good. Still no hair :( I've come to the conclusion that I just need to push myself harder then I ever had. My body seems to just want to lay around on my heating pad, take 2 hour naps, and watch Access Hollywood but then my mind goes crazy with inactivity (and celebrity gossip). I was tired all the time and feeling apathetic.  I met with my therapist on Tuesday, and she suggested adding Wellbutrin ( anti- depressant) to my Lexapro ..... Now while I'm all for feel-good chemical help, somehow this motivated me to just get moving. Despite the frigid weather, I dragged my butt out to get some fresh air and exercise and it's working. I'm starting to feel better already. There is something about exercising that my body responds to (just wished the weather was warmer). I think I allowed myself to "couch potato" because I was feeling sorry for myself, not so much for my diagnosis as I have came to terms with that, but for a never- ending cycle of doctor visits, tests and treatments. I was living in the moment but not really enjoying it much. So with some fresh air and a celebration of a New Year, I'm ready to tackle 2015 with all I got. 

"Let yourself be silently drawn by the strange pull of what you really love. It will not lead you astray." Rumi