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

MRI results

Sorry it's taken me so long to post- I just don't have the motivation lately. I

had my repeat brain MRI last week... My Radiation Onc was happy with the results... She said there was vast improvement and the results should get even better over the next 2 mos (there were still small spots, but no big ones) ... Max "effect" would be in 8 weeks... So I'll have a repeat MRI scan end of Jan ... And I'm still working on titrating those PO meds.... I'm up to 4tabs a day (5 is the goal). It's a targeted chemo therapy that crosses the blood- brain barrier called Tykerb (but it's giving me bad diarrhea and I have no appetite) .. Oh and can't forget the extreme exhaustion, I just want to lay around- and I have no energy to do anything. 

With the Christmas Season upon us, it makes the fatigue especially difficult- but no worries, thank God for Amazon! The puppy, Tucker, has adjusted well and is already part of the family (okay not house trained yet but making progress:)

So my lazy self is plugging along, grateful for all your love and prayers and looking forward to the Holidays. 

All my love,

Kellie 

Saddling up!

I had my appt with Dr. Fellin last week along with my treatment of IV Hercepton and Zometa. All went well. We are working on getting an acceptable dose and schedule of the PO chemo drugs (Xeloda and Tykerb) as they are giving me awful watery diarrhea (and other SE like fatigue, swollen/ painful cuticles, dryness). They are known for the diarrhea so Dr. Fellin is working on a tolerable does for me. See, the diarrhea shows that something is working, and my headaches went way, so we are going to really try and find an acceptable dose for my body. We have to weigh pros and cons and find an acceptable, livable treatment option. I’ll restart Xeloda too but not for 2 weeks .

The upside to all this is with having breaks with the meds, where I have some good days feeling myself (well except for the fatigue). I’m having my repeat Brain MRI 11/24 and an echo (since Hercepton can cause Heart issues); I have it checked every 4 months), and a couple of Doctor visits for check ups! Still just taking it one day at a time and living in the moment.

This last health bump in the road was the hardest yet- probably because I didn’t feel myself; I was unsteady, tired, apathetic and just wanted to sleep. Oh and ravenously hungry (from the high dose of steroids I was on). I gained 10+ lbs! Half came off with the diarrhea so I guess it was good that I gobbled down so much! The meals many of you brought me were so delicious and I ate everything! 

I’m finding it harder to “get back to normal” as I’m so tired most of the time. I do push myself to get up and just push through it. I’m taking walks and practicing my yoga. It reminds me of that quote “No matter how you feeling, get up, dress up, and show up.” I guess sage advice for all of us! The puppy is helping. He is full of energy and unconditional love. He had settled into the family so well!

I came across a quote by John Wayne (of all people!) “Courage is being scared to death and saddling up anyway” … So I hope you saddle up and I’ll join you on this wild ride!

So I’m soldiering on, still feeling humbled by your generosity, support, and love...

Kellie