Chemo vacation

I dutifully showed up for my Onc appointment on Wednesday for my 6^th treatment. Honestly, I was not looking forward to it as I still felt run down from my last, but psyched myself up and got ready. To my surprise, Dr Fellin suggested a “chemo vacation”. He gave me the option but steered me toward taking a break from the hard-hitting chemo (taxotere) and just get the antibodies (herceptin and perjecta).  I’d get a break from Zometa as well (every 6 weeks vs. every 3).  He also suggested we wait on the scan, let my body heal and recover and see how it goes. If I got any symptoms back then we’d continue with the regimen (and get scanned).  This way we can see how I do with just the antibodies. He pointed out my labs were all normal (and when my bone mets were active I had high phosphates) and I was not experiencing the symptoms I had before.  Even my echo was normal (EF up to 55-60% which is terrific). He said, spend time with the kids and enjoy- oh it sure is the “little things”. 

So, I only received Herceptin and Perjeta yesterday and boy do I feel terrific today! I agree with him that at this point it’s better to preserve my body and mind. The way I see it I’ll always need some sort of chemo, and as time goes on and the cancer gets smarter and resistant, I’ll need more and more powerful ones. So if I can take a break here and there I should seize the opportunity. So the plan for now is to get hercepton and perjeta every 3 weeks and zometa every 6. Scan if I get symptoms or this regimen stops working.  My hair will stop falling out and the only side effect will be loose stools and occasional diarrhea. I’ll take it! This will be the best vacation I ever had!

On another note, I finally went bra shopping with my new set! I was secretly looking forward to this ever since I had reconstruction last December but was side tracked with all the cancer mets and drama. So off I went to Macy’s…. I did not need forklift support (they pretty much stay up on their own) so I felt like a kid in a candy store- I could literally get ANY type of bra there. I have never-ever in my entire life been able to pick out ANY bra- underwire or none, lace, push-up, demi, strapless, padded, sports ….. they all fit! (And I could even get the cheap ones). I have to admit I had fun.  Again, it sure is the “little things”.

Thanks as always for your love and support,

“Enjoy the little things for one day you may look back and realize they were the big things” – Robert Brault

…. Rhinovirus!

I finally have something to update!

So it was taking me a lot longer to “recover” from this last treatment. Usually by 1 week I’m up an about as usual… but this time I was still dragging. In fact I was really dragging, my throat really hurt, and I had bad congestion. I still soldiered on and even pushed through last Saturday that started with dropping Ella off at Bounce U for a Birthday party at 10:00, watching Abbie at her end of season softball event, then watching Tommy’s team win a game toward the minor league championship, spending time with Krista, Brayden and my parents, with the day ending going to a very hot and humid BreastFest fundraiser… oh boy this would exhaust anyone, so when I got home I collapsed on the bed and said I’m done. I had the chills but thought it was ‘cause the air conditioning felt sooo good. But when I took my temp. it read 100.7.

Uh-oh

I threw off the blankets and waited 20-30 minutes…

100.7

@#$!

I knew I had to call the on-call Onc as any fever is a bad fever when on chemo, especially as this was day 10 of my chemo cycle where my count was the lowest. The Dr. did not hesitate and off to the ER we went. I could write a whole blog about what we saw (and smelled) at Jefferson’s ER on a Saturday night but basically, after only 6 hours in the ER, I was admitted for neutropenic fever … which is low white blood cell count combined with a fever. I was swabbed, cultured, examined from head to foot, repeated my story and symptoms a million times, all to find the source of this infection. It is a very serious thing to get an infection when you’re neutropenic. I was given IV antibiotics, fluids, medicine for my throat (which turned out to be thrush) and put on precautions (when everyone and anyone has to wear a mask and gown to get into my room). After two days of negative results, they gave me a shot to boost my WBCs (this is typically given after each cycle but since it can cause bone pain, and I was otherwise healthy, my Onc did not prescribe it for the first few cycles). Well it worked- my WBC’s went from 1.1 to 5.2 (normal is >3), and my neutrophils went from 381 to 2862 (normal >1500)! And the results of the virus panel came back that I had Rhinovirus … although this sounds horrific, it’s just the common cold! So I was sent home Tuesday.

I feel so much better. Amazing what a few WBCs can do! So I’m back on course, treatment #6 is next Wednesday. This hospitalization reminded me to center on the positive, be grateful I am tolerating the treatments so well, as many others on the unit were not so fortunate. I will have many ups and downs, and this will not be my last hospitalization, but today I can say I feel terrific. And if you remember- I am just taking all this one day at a time, living in the present, being attentive to the now.

“The mind is everything. What you think you become.” - Buddha

The good, the bad and the ugly…

I again struggle with what to write this week as I feel I’m just plugging along with treatment and life. I debated about what you wanted to know, did you want to know all the ugly details of cancer treatment ? Like how I got sick this round (started from both ends (yes at the same time ;( and now just occasional stomach rumbling and diarrhea; how my thrush is acting up again and causing throat ulcers or that I look like a plucked chicken as most of my hair has fallen out? I actually feel that I’m very fortunate that these are the worst of my side effects. It could be a lot worse…. As evident when I called my Onc to relate these side effects, he asked if I could still swallow and eat despite the ulcers? Umm, yes I replied “then no worries about the throat ulcers”. Then he asked, “do you have chills and a fever with the diarrhea?” No, I said and I only had it a couple of times. Although he was sympathetic, he again was not worried and sounded relieved. He prescribed dyflucan again for the thrush, instructed me to take Imodium and call if anything got much worse. The laundry list of possible side effects is unbelievable and I’m very lucky to have minimal reactions.  I feel bad, but really not thaaaat bad.

So maybe I can share a good thing that happened today. Since, I’m not sure the plucked chicken look is in, I wore my wig for the first time to work. I decided to just rock it and not think twice. To my utter surprise, the gas attendant at the Wawa on route 70 actually flirted with me and said, as he handed me back my card, “Don’t ever change your loveliness”, wig and all. Okay, so yes he looked like he just got out of jail, and yes I was driving the van with the kid’s stuff thrown all over, and I did double check the receipt with the pump, but it felt nice that despite I knew that I was wearing my wig, this guy just couldn’t tell! So when you see me, wig-and-all, remember the gas attendant liked it!

I’ll be getting an echo next week to check my heart function and my 6^th treatment will be 6/18; with a repeat scan thereafter. I’ll update everyone once I get the results, let’s pray for shrinkage, major shrinkage!

Thanks as always for your support and love.

In memory of Maya Angelou, my two favorite quotes by her:

"I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel."

"You may not control all the events that happen to you, but you can decide not to be reduced by them."

Mindfulness

I’ve had a good couple of weeks. I began walking again and doing yoga- light. I had my 4^th treatment Wednesday (5/7/14). My blood pressure and heart rate have finally  returned to normal (they were very high these past couple of months- most likely stress), my weight has stabilized (I was losing  a little weight), and my labs all came back normal (except that my White Blood Cell count is low but not critical- WBC’s help fight infection so I need to just be careful). The plan is to finish the 6 treatments with Taxotere then have a scan (either a PET, if insurance pays, or a CT) to check for response. Most likely in June. I’ll also be due in June for an Echo to check my heart EF. I will continue with Perjeta, Herceptin, and Zometa indefinitely. I basically am feeling good, just tire more easily. So, still just swimming and living in the moment.

I’d like to share my discovery of Mindfulness. Many people have mentioned Mindfulness to me: my yoga instructor, social worker, nurse. It was not until my therapist recommended two books- The Art of Mindfulness by Thich Nhat Hanh and Full Catastrophe living by John Kalnat Zinn that I began to fully understand what it means. I thought it was an abstract mediation practice that I would never have time for- but I was wrong. Mindfulness is what I’ve been grasping at while I say “live in the moment” and “take one day at a time.” It’s about being aware, being present, and learning to appreciate the here and now. I highly recommend anyone looking for some peace to look into it! It has truly helped me to center and pay attention to the present.

Thank you all for your continued support and prayers, I’m truly blessed!

“According to the Buddha, life is available only in the here and now, the present moment. He said, “The past is already gone, the future is not yet here. There’s only one moment for you to live, and that is the present moment.” If you miss the present moment, you miss your appointment with life.”

Hope cookies, homemade nutella, and a Holiday....

Sorry, I've neglected my own blog. I honestly thought about it, I just didn't know what to say. I feel like I've said it all, that there really is no hot-off-the presses update. I'm just soldiering on, but with some fortification from much needed meds (Lexapro), a therapist, and goodies from you (I'm amazed at your thoughtfulness; from hope cookies, to homemade healthy treats, to taking ALL my kids on a WALKING tour to Franco's and Rita's, to a work collection to send us on a mini get-away!).

I had chemo tx #3 last Wednesday (4/16/14), yes it took all day again, yes I felt crappy after but at least I felt crappy "down the shore" and was able to just sleep it off with my family around me (and raid Easter baskets for chocolate). I did get a couple of good days to take in the ocean, which to me is restorative and calming.  When I met with Dr. Fellin, we discussed my treatment regimen and decided that, although I seem to be responding very well to the chemo,  we will continue with the full 6 treatments with taxotere (so 6/17/14 should be the last for a while, I'll still have the antibody chemo infusions every 3 weeks forever but they are targeted so do not have the same yucky effects) ... I'd rather be overly aggressive then stop early because of the few side effects (namely the hair loss and fatigue). Speaking of hair loss, Dr. Fellin was amazed at how much hair I still have left (to me I feel like that it's not much), but it's not lasting. I'm thinking probably by next week I'll be sporting my new hairdo (aka wig).

Otherwise I feel good. No pain, just very tired and my stomach is not right most of the time- but this doesn't bother me. The Lexapro has really helped, I'll get an anxious thought but then I just acknowledge it and it fades away, no drama, no tears. I also had my first visit with a therapist who was very helpful, I like her. She gives me new ways to think about things and reminds me of my own motto/ strength: to live for/ in today. It was funny though when we were ending the session, she said yes, you need to continue with therapy- you think? Ha, I guess I have a lot on my plate.

Thank you for your continued support, love, and prayers,

Kellie

PS: I thought I'd share with you what is on my office wall at work (and I did this prior to ever being diagnosed!)

The elephant in the blog......

It's been 1 week since chemo and as predicted I'm feeling better each day...Well physically that is. I did have my 2 days of what I call "yuckiness", earlier this time as it started Friday morning and lasted till Sunday morning, but each day since then I'm feeling better. All that's left is tiredness. Oh and lots of hair loss.... I had hoped it wouldn't but it is. I probably should shave it like last time but I'm still holding out that I can last a little longer. So I've pulled out my scarves and will see....

So to the elephant in the blog.... Up till now I've been so focused on updating my physical symptoms and treatment regime I've completely ignored the elephant in the blog- how I feel about all this. I know I've said I'm just going to keep swimming, dancing in the rain, yadda yadda, but it's been increasingly hard to soldier on. I think it's the hair lost, could be the weather, but I know it's that this just sucks, cancer sucks. I have not been able to use my usual coping method, i.e. running, so have decided I need another, so either therapist or meds or probably both! I saw my PCP yesterday and he hooked me up with both! So we'll see, it will be interesting to go to therapy as I've always felt like a sort of therapist myself... I'll be able to compare notes of the advice I would have given me- which you know would be "just keep swimming", "take one day at a time", "it's all in how you react", "instead of waiting for the storm to pass, learn to dance in the rain"...... Oh and I'm sure the meds can't hurt!

My heart still swells with joy with the outpouring of your support,

Xoxoxo, Kellie

An old Cherokee told his grandson, "My son, there is a battle between two wolves inside us all. One is Evil. It  is anger, jealousy, greed, resentment, inferiority, lies, and ego. The other is Good. It is joy, peace, love, hope, humility, kindness, empathy, & and truth."

The boy thought about it, and asked, "Grandfather, which wolf wins?"

The old man quietly replied, "The one you feed."

Still swimming.... Dose #2

Today I had my second chemo doses.... In addition to the pre- meds (Benadryl, steroid, Pepcid, zofran), the her2 drugs herceptin and perjeta, the yucky taxotere, Dr. Fellin added Zometa for the bone mets.... Phew I'm exhausted just writing them out! It was easier today as I did not have that bone pain I had last time..I slept through most of it as the Benadryl really knocks me out..... Dr. Fellin (onc) was happy to see me feeling and looking so good. I asked how long I was to be on taxatere (it's the one with all the annoying side effects and if the her2 drugs are the ones working then maybe I don't need it so long and ok cause I'm losing my hair and dread it again... I know it's so petty, but I feel so ugly bald, no one ever really saw me without a wig or scarf except my family but I see it, Jason and the kids see it and it's hard... It's hard being 40 let alone a bald 40....ok enough of the pity party- it's really the least of my problems and I'm grateful there are drugs to shrink these rumors.... And as a good friend said- I rocked the pixie cut;) OKAY, so dr Fellin said the " protocol" is 6 rounds of taxatere, but if I'm doing well, ie tumor shrinkage, then maybe we can just do 3-4... So we' ll re-scan and see.... Probably after # 3 or # 4.

So, I felt terrific these past couple days..... So hopefully once this taxatere clears I'll be back to that terrific feeling again.... Usually by Monday... Until then, I just take it easy and get lots of rest.

I officially told the kids tonight, they of course already knew something was up- I mean lots of delicious meals and treats, flowers, and gift boxes being delivered by good friends and Mom Mom doing our laundry...Pop Pop driving me to "work".... They are smart and knew... But it felt good to talk it out with them. They do not know the extent of it, just that I have cancer again in my body so need the medicine that gets rid of it, and yes I'll lose my hair again, will have days that I'm tired but good days to- and that was it, back to eating dinner... I think they saw me get better last time, I'm doing my best to "carry on" and not disrupt our busy life so they are fine. I'm planning on finally seeing a therapist as I need someone (impartial) to talk through these crazy, fluctuating feelings I have so will talk about the kids as well....

Thanks as always for your prayers.... and for helping me to Keep Swimming!

Love xoxoxo, Kellie

He said, "There are only two days in the year that nothing can be done. One is called yesterday and the other is called tomorrow, so today is the right day to love, believe, do, and mostly live"- Dalai Lama