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

Love

So the good news is I'm starting to feel myself, getting my mojo back, headAches only when I get overtired (which can happen easier now- I need 2 naps a day!).... So Still very tired but compared with how I felt before I'll take it! I think I'll keep improving! Isn't it miraculous the power of prayer? You all have been so wonderful, I'm still humbled by the outpouring of love and support.... People say I'm so strong and it's amazing my attitude- but really how else could I be? "You never really know how strong you are until being strong is your only option"..... I choose to live, take one day at a time and make the best of it. I know we have been dealt a shitty hand but I can honestly say I feel eternally grateful for the rest of everything: my life has been everything I could ever want- and I truly mean that- I have Been so blessed... With INCREDIBLE parents and family, friends who are there for me and make life so fun, a fulfilling career that I not only love and am so passionate about but I'm very good at, a supportive loving husband who respects me, cheers me, and is my best friend and a home and neighbors within a neighborhood that is cozy, safe and fun and of course 3 beautiful children inside (and out) who are so caring, loving, smart, and who I'm so very proud of! I've been so fortunate my entire life to not have to suffer personal grief .,, I did lose my grandparents but I was so young and oblivious....but I know others who have and how they suffer. That's why I'm so into this mindfulness (living in the moment), taking only one day at a time, it works, it helps me cope, it reveals how beautiful life is! So updates- I had my herceptin infusion Wednesday and saw dr Fellin- all is stable! Well except for the 8 lbs I gained eating your delicsh food. started the PO chemo Friday (so far just having what he said loose stools- so I guess I'll loose those 8 lbs easily 😊) repeat brain MRI is 11/24...And soldiering on! Love to all of you... Cause really love is what it's all about.... Some of my mojo quotes: "The key to happiness is letting each situation be what it is instead of what you think it should be." "What you think you become. What you feel you attract. What you imagine you create." Buddha

Taking one day.....

Good Lord.... Taking one day at a time ...and so should you!

So I guess I better clear up just what is going on, yes I could be in a better place, actually, but I'm fortunate and in fact I'm just at the beginning of my her2 treatment options ...  Radiation, her2 specific chemo, more radiation if I need it etc... Although her2 is aggressive and fast it actually is a benefit to me, we can kill it quickly... Do I have years- no... Do you have years- I hope so but I guess that's up to a higher power anyway... Kinda what I was saying when I needed my mindfulness mojo back.... It's only been 3 weeks for me to grasp my new reality and I desperately need to center myself and live in the moment again, easier said then done- try it.. It takes a conscious effort and often you have to block out the other "noise". I don't want to seem ungrateful for all the heart touching well wishes- I've heard from friends near and far and my heart swells with the knowledge that I've touched so many lives.... But I thought this might be the perfect opportunity to share what makes me smile with joy... I simply just need you to say "I love you Kellie, you and your family are in our thoughts and prayers and have Faith in what is to be, whatever that is to be, in the meantime we will soldier on together!"

I'm trying to get a semi normal routine back- it's how I cope, and I don't do laying around real well, it will be slow at first but I hope to soon be up and about more! So send me your mojo- I may not text back but I assure you I get every well wish...mojo is just the thirst to live, a funny text, a kind word, a pic of Jamie Frasier (ok Damon too) a good recipe (I'm starving all the time from steroids), a life quote... Or Just love...💜

Some updates:
Radiation is done for now- rescan11/24 to see if I need more, I'm grateful for the break cause I'm fried (literally on my forehead) and lost what little hair I had - but was assured it would grow back by Xmas I'll Continue with IV hercepton, Zometa and start po (pill) form of perjeta which crosses the blood/ brain barrier (no need for inthathecal chemo now)

Results of Pet and MRI spine: good news! My scans showed improvement from Feb, my spine and bones with no active disease, lungs better, watching liver but nothing really new (except brain).  We'll just cont with antibioties. . rescan brain in 6 weeks, and take one day at a time. I still have my headaches but most likely that's due to brain swelling from radiation... So that should improve with healing.

We are about to get a puppy- yes u read right... A French Bulldog... I have a good excuse, The tumors effected my reasoning... ;) But we Can't wait, he'll be here mid-Nov and I can't wait! I need this....


I love each and everyone of you, am so grateful for the support we have and wish for you to continue to live in the moment with joy at this unexpected gift we all were given... Lots of love, Kellie

knew it would….

I guess I'll just begin where you all need updates. Yes, I did have a headache that sent me to the ED last week, I couldn't wait it out for my scheduled STAT MRI Tuesday. I just progressed to unbearable headache pain , then with only a 7 hour ED wait, I was admitted Friday night, had a CAT scan and subsequent MRI - both showed what suspected- Brain Mets, non operable as they are small and scattered. Good news is that they are not blocking blood flow, just giving me a wicked  migraine, and oh so tired. Plan is for daily radiation to my head for 10 days, consult with Neuro Onc to see if i'm a candidate for intrathecal chemo (directly to the brain). As Herceptin does not pass the blood-brain barrier. Ill also have a spinal MRI (all ) three sections) to see that's going on there, then if approved another PET and maybe a spinal tap. Continue with Hersceptin, Perjeta, and Zometa my full-time job will be this for a while. Still waiting to see how I make out with the head radiation, some say I will gain some of my suburb functioning back- or at least my stubbornness so I can work but we'll see. The one positive thing is I don't even feel like working now, so no worries there.

I'm again so humbled by your outpouring of support, and feel a little frustrated I can't' respond back to everyone of you. But please now that I have gotten each of your well wishes and prayers, kind notes and thoughts for concern. It means so much to me and my family to know there are so many on our team.

I've always said this but can not stress it enough, live for each moment, cherish your health, be nice to each other, life is precious and short, enjoy the little things for one day you'll look back and realize they were the big things.

Love, peace, friendship,
Kellie

LovethisLife...

Yes, I know it’s been a while since I posted… I’m sure you’ve guessed by now that I’m not 100%. It started about 2 weeks ago, just before my last treatment actually. I developed a headache, hoped it was “just a cold” coming on- which it was. In fact, all the kids came down with the same cold symptoms (headache, congestion, runny nose) but when their cold past, my headache remained (and now with a little dizziness). I have to admit that making it all worst is my mind wandering to grim scenarios. I finally broke down and called my Onc dr. He already knew about the headache because I had mentioned it at my last appt 2 weeks ago, but it had just started and I wanted to wait to see what happened (yes I was too afraid to do any testing then). No surprise he ordered a head MRI, so we can rule out brain metastasis. (I’m scheduled for Tuesday 9/30/14).

Many of you know that this scares the hell out of me. I can deal with metastasis to anywhere else but have always been so afraid of any brain involvement. For many reasons but foremost in my mind is that the growth would cause ME to not be ME anymore. I pride myself on my self-efficiency, I can cope cause I can soldier on, keep things as normal as possible. It scares me to think that I wouldn’t be able to do this, doesn’t scare me for my sake but for that of my family. I guess I know too much, would be better off ignorant but as it is….

 As my mom and good friend Molly point out its better to know what we are dealing with so we can just tackle it too, like we’ve done up to now. And no sense getting upset until we know what that is, getting upset goes against all mindfulness practice. I have to remind myself to live in the moment, take one moment at a time and let Faith be bigger than my Fear. I know for me it’s the unknown that is the hardest to deal with, once I know (even if it’s the worst case scenario) I’m much more able to cope and soldier on. I knew there would come a day when my winning streak would end or there would be a bump in the road, but I had hoped to get a little more of a break… On a positive note, I’m pretty sure I still have HER+ cancer, so even if it has travelled to my brain, the hope would be that it would shrink if I could get an infusion to the brain (blood infusions of herceptin do not cross into the brain). But I am getting ahead of myself, I may just have a sinus infection.

 It sucks that I (we) have to live this way, being afraid of every little symptom, playing out grim scenarios, playing what if… but as I’ve said many times, I am so thankful for every minute I am given, I take pleasure in the here and now, look to each day as a gift. If only everyone in the world could have this outlook, it sure puts life into perspective. My good friend from college, Anne Marie, has been sending me an inspirational card EVERY week since I’ve been diagnosed. The cards are beautiful, sometimes a beautiful drawing or picture and other times a relevant quote or reminder I’m not alone.

This came a few weeks ago and I wanted to share:

LovethisLife… 
Is about celebrating the moment and that we’re not guaranteed or owed another day
and how cool it is that what we hide can actually be the fuel towards our glory and
that it’s not so bad being proven wrong

LovethisLife… 
Is about welcoming the blind turn and the possibility that there’s no such think as coincidence
and that it’s never too late to pick up a guitar or a paintbrush or to make an amend
or to make a new friend

LovethisLife… 
Could be about rekindling a past flame or igniting a new one or
shapeshifting from a dreamer into a doer or savoring the caress of a love long gone

LovethisLife.. 
Means whatever it is you want it to mean because

LovethisLife… 
Is a celebration of you and your path

LovethisLife..
‘cuz it could go at any second
you rock.

I don't have a toothache!

I had another dose of Hercepton, Perjeta, and Zometa Wednesday. My check-up with Dr. Fellin was unremarkable, all is well, lung stable, and even better so is my weight (despite splurging while down the shore). I’ve been introspective lately and reexamined my resolve to take life one day at a time. Yesterday, a pillar of my online cancer support warrior group passed away after walking with inflammatory breast cancer for almost 2 years. She was full of life, always had a snarky remark, lifted our spirits with humor and compassion. She is at peace now, and left behind many who loved her. I hesitate to use the words fought cancer or lost the battle, as cancer is not a fight or battle and no one wins or loses. There is no rhyme or reason why some of us are “cured” after minimal treatments and others keep on progressing and will always walk with cancer. I do know that cancer changes your life either way, you have to be mindful and appreciate each day. Life and health are a gift many of us take for granted. My therapist gave me an easy way to remember this, ask yourself if you have a toothache. I bet you don’t right now. But if you ever did, remember how horrible it was, it was all you could think about, each day was misery. So when I wake up in the morning, I don’t think about my Stage IV terminal cancer… I think hooray I do not have a toothache today, my body does not ache, I can breathe easy, no headaches, actually I feel terrific! Others are not so fortunate. This brings me to the ALS ice bucket challenge. At first I was appalled. How could people, not touched by the disease, throw a bucket of ice over their heads AND to make it worse post it on Facebook? How insensitive… and what about a cure for breast cancer, or all cancers, but what I soon realized is how brilliant it was. EVERYONE knows about the pink ribbon, survivor walks, save the tatas…. But how many people knew or donated to ALS research, hardly anyone. ALS is a horrific disease that deserves a cure just as much as breast cancer. (One note when donating to breast cancer charities- look for those that fund research NOT awareness like The Breast Cancer Research Foundation at www.bcrfcure.org) Lastly, next you see me I’ll probably be sporting a new, cooler hair do as I’m ready to rock the Sinead O’Connor look! Take care everyone, here’s hoping you don’t have a toothache! Love, Kellie

The best therapy… chocolate, puppies and laughing with friends!

Dear friends, I’m still feeling terrific! And I’m still astonished that 125 of you are still following my blog! It started as a way to keep family and friends updated with what was going on and turned into a sort of therapy for me. However, these past few weeks bought the best therapies- chocolate, puppies and laughing with friends! Despite feeling well, both physically and mentally, I understandably have my occasional moments. A family trip to Hershey Park with the kids was wonderful (thanks to my work friends)! We had a terrific time (and got to eat chocolate!). Then my BFF invited the kids and I to visit with her sister’s dog’s 10 new 5-week old puppies! Oh my they were adorable- something about the innocence of 10 puppies- both the kids and I couldn’t get enough! Sometimes it’s truly the little things in life that reaffirms how awesome life is. Lastly, a very good friend set up a girl’s night out, to simply paint pottery. Again, this simple task, along with some drinks and laughs, was the perfect medicine.- I’m still smiling!  

I had my tx with Herceptin and Perjecta Wednesday, met with Dr. Fellin and all is well. Labs came back normal. We are just keeping a close eye on my breathing and lungs as he heard a little fluid in the right side, nothing new though so we’ll just monitor. I’m able to walk everyday without getting short of breath so I will soldier on. I’m looking forward to vacation down the shore (Sea Isle City) with the family, always a highlight of the year for me and the kids… something about the smell of the salt air, the sand between my toes, and the warm sun on my face (oh and of course Yum Yum ice cream in my belly!).

Thanks for your continued kind words, love and prayers. I'm so grateful for each and every one of you! 

Happiness does not depend on what you have or who you are, it solely relies on what you think. ~Buddha