Thursday, July 29, 2010

The Cousins!

Dylan, Fisher, Emma and Jenny-Jane















What a joy it is to have a houseful of family!  

The Livingstons arrived this afternoon and the cousins are basking in each other's company.  After a initial dance party, Fisher and Jenny-Jane's formal way to welcome guests into our home, the kids immediately fell into what I expect to be a weekend long pairing, Fisher playing with Dylan and Emma loving on Jenny-Jane.  

The kids and Nick jumped in the pool for an hour of wild fun, dogs and all, and we had a very full table on the back patio for dinner.  Currently they are lined up on the couch in the living room enjoying The Fantastic Mr. Fox, eating ice cream sandwiches, and trying to stay awake. It's moments like this that I pine to live closer to our loved ones, and wonder why we chose to live clear across the country from our families. 

It's also so very wonderful to have Wendy back with us.  She doesn't miss a beat emptying the dishwasher or putting dinner in the oven.  Wendy's husband Troy joins us on Saturday from his conference here in Phoenix.  Then we'll have a houseful.  So fun.

I'm still feeling amazingly well.  Aside from an afternoon nap, I'm able to keep up with all the festivities.  I even had my first (in three months- come on, you know me) half glass of wine tonight.  We don't have big weekend plans, just lots of time in the pool and planning the next meal. Sounds perfect.  I'll regale you with all the stories of cousin craziness later this weekend.  I'm really looking forward to enjoying every moment of our Livingston/Hower weekend.  Everyone is so happy to be together, the house is filled with love.  Thank you lovely Livingstons, we are overjoyed you traveled so far to be with us.

More to come, of course.
love
k


Sunday, July 25, 2010

Almost Normal

Happy Sunday Evening!
Has it really been since last Monday that I have written? Yikes, sorry about that. I guess I haven't had too much to report, which in general, is pretty darn good. My week after Monday's Taxol treatment was surprisingly mild. Yes, I did get a low fever and my doctor did put me back on antibiotics, and fatigue was in full force, but my bone pain was a fraction of the intensity it was after my first treatment. I spent my days resting and my evenings with the family. I didn't miss a meal and was able to help put the kids to bed every night, two things that are high priorities to me. All very normal, which is all very cool.

I am having one new weird side effect, chemopause. You heard me. Chemotherapy shuts down the ovaries of gals who have yet to have menopause, creating chemically-induced menopause. So, while not having periods during all this is a bonus, I am having intense hot flashes just on my bald head. I know, if being bald weren't bad enough. The hot flashes hit randomly and make me panic for a minute thinking my fever is raging, but then I remember fevers give me chills, not incinerate me. Really? This is all too much.

This weekend, I discovered an interesting phenomenon. Coffee!! Ok, I'm no coffee virgin, but like with alcohol, I've been avoiding caffeine since I started chemo. I just kind of thought "clean living" was the right path to take during all of this. But Saturday and Sunday this weekend, I said to hell with it and started my day like Nick, with a cup of Joe (no, not a bloody mary). Well, let me tell you, I had more energy this weekend than I've had in months. Only drawback is that when I went to take my regular afternoon snooze while the kids took their naps, I just laid there with my eyes closed trying and trying to sleep. Oh well, I'll take the boost of energy over a nap any day. Now, I'm wondering if I should reconsider the whole no alcohol thing... hmmm...

This week our family is super excited to welcome the Livingstons to our house on Thursday. This is Nick's sister Wendy, her husband Troy, and amazing 'tween kiddos Emma and Dylan. Wendy was here for my first chemo treatment and was invaluable in helping us navigate all the medical lingo as well as taking over the matriarchy of the family while I was out of commission. She knows her way around our kitchen (which sippy cups get which lids), the kids schedules (there will be absolute silence in the house during naptimes, no exceptions), how Nick likes his cocktails (shaken, not stirred), and all our "special needs" (like Jenny-Jane requires one binky in her mouth and three in her hands, basically at all times, sigh). Our little kids are going to go completely gaga over their big kid cousins and we can't wait to sit back and enjoy each other's adult company while the cousins do all the child care! (Hope, hope) Plus, Wendy gets to come to chemo #7 with me next Monday the 2nd. I think she's actually looking forward to it.

I think I only have one doctor appointment this week to have another expander fill on Tuesday (I can almost wear fitted t-shirts again!). I'm going to see a few friends, run some morning errands before it gets too hot and plan for our guests. I'm wondering if I'm easing back into my regular life. Could it be? I so don't want to eat my words, but I think we are turning a corner toward normalcy, or some new version there of. Yes, a collective sigh and smile is appropriate.

love
k

Monday, July 19, 2010

Hey Ladies!

 












In addition to Nick's wild boy band that was visiting this weekend, I had my own girl team on board. That's Marcy, the lovely brunette, who came to visit from San Francisco with her sweet baby girl Lucy (being held by Rebecca's daughter Ryan). Marcy joined me for chemo yesterday and then all the gals came over last night to keep me company while I'm still feeling pretty good. I love having my best friends and their kids in my house, all the laughing and silliness feels so very normal. Oh, and note that my "hair," the 1/8" inch that I still have left, is pretty blonde. I'm not sure if that's an indication of what's coming, or just the precursor to the black curly afro that I'm anticipating (yikes!! you never know what you're gonna get).
Yesterday's Taxol infusion was pretty uneventful. It went quicker than last time, which was good. Marcy brought some hysterical college photo albums which made the time speed by. I was able to eat lunch after and even take a nap. Nanny Judy works ten hour days for us on my chemo weeks which is such a blessing. I'm able to go to my doctor appointments In the mornings, rest when I need to and play with the kids when I'm feeling energetic. If my symptoms follow my last Taxol infusion, I can expect to start feeling yucky tomorrow afternoon, although I'm starting to feel kind of groggy now already. I'm praying that I am spared the fever from last time and just have the bone pain to manage this time around. If all goes well, then I only have two more Taxol treatments before radiation, yay!

Tomorrow I have another expander fill in the morning. I'm definitely gaining some shape which is cool. I actually wore a new bathing suit this weekend while the boys were here and had a somewhat feminine shape. Just wait until I have my implants in fall of 2011, va-va-voom! I can't wait to wear the tank top from my friend Andi that says "Of course these are fake, my real ones were trying to kill me!"

A quick shout out to nick's sister Wendy whose birthday is today, and a great big thank you to Marcy for for traveling to hellish hot Phoenix to visit and take me to chemo this week. I am so very grateful for the amazing women in my life. Thank you ladies, I love you so.
K

Friday, July 16, 2010

Hail Hail The Gangs All Here

 









You would not believe what's going around here, it's incredible!! About 10am this morning the most handsome work crew you could ever imagine arrived on my doorstep. That's Nick on the left, then Tough as Nails (but sweeter than pie) Darren from way north Phoenix , Big Pete from New Jersey, and Fireman Curt from Hermosa Beach on the right. They descended on our home and they have not stopped working for a moment. The front and back lawns have been aerated, the roof has been cleaned, and everything in Pete's sight has been power washed. These are three of Nick's very, very best friends from UofA and they hatched this plan to travel from near and far to make right everything that might be wrong with our home. When their offer came in, Nick immediately started making lists of all the things they were going to accomplish together this weekend. They've only been here three hours and I think they've ticked off most of the list. As you can imagine, Fisher is in hog heaven. He stole the power washer from Pete and has been spraying the dickens out of our front driveway.

And that's not all, one of my bestest girlfriends Marcy arrives today from San Francisco! She's here to lift my spirits and attend my next chemo with me on Monday. Speaking of which, we decided with my oncologist to go ahead with the dose dense (heavy duty) Taxol infusion. I'm armed with a new prescription for Vicodin and I'm not afraid to use it.

I feel like a damsel with all my handsome knights circling the castle and I could not be happier.

love
k


Wednesday, July 14, 2010

Jenny and Kristin

 












This is the post I've been wanting to write for months, since all this started, but I couldn't. I'm not even sure I can now, but I'm going to try. Yes, that's me on the far left and the little girl by my side is my best friend Jenny. We are about five years old, about a year after we met in kindergarten at Dunwood School in our home town of Fox Point, Wisconsin. This is my favorite photo of Jenny and me. I remember our nightgowns and our teddy bears in perfect detail. There would be literally hundreds of "Jenny and Kristin" photos taken over the next thirty years. Almost every memory of my childhood includes Jenny. We grew up side by side, hand in hand. Yesterday, July 13th, was the third anniversary of Jenny's death.

My very best friend in the whole wide world died at the age of 36 of metastasized melanoma. She died of an aggressive cancer, leaving two little ones, then aged six and nine, a wonderful husband, two sisters, her mom and me. While I held her hand across the phone lines between Arizona and Wisconsin as she endured chemotherapy and countless horrible procedures, I never could never really understand what she was actually feeling. Now I have a glimpse of what she lived through and it makes my heart ache so much that I can barely breathe.

I know that I do not have the same type of cancer Jenny did. I know that breast cancer survival rates are high. I know Jenny's now holding my hand through every day of my treatment. I know she is up in heaven negotiating my parole down here on earth, and she's asking for thirty to forty more years. She's a charmer, she'll get it for me.

The stories of our lives growing up together are incredibly funny, adventurous, creative, heartfelt and sometimes, even mean. Yes, high school was a tad rough, even for us. I've considered writing a book of our memoirs, and that may very well be one of my first endeavors as I look for things to occupy my time once doctor's appointments aren't my main source of entertainment anymore.

So Jenny, here's to us, the little girls in that sweet photo. Thank you for being my guardian angel and my forever best friend.
k


Sunday, July 11, 2010

New Drug = Bad!!

Hi there!
Remember all the good things I had to say about my new drug called Taxol? Well, forget it!! It sucks and I hate it. How's that for honest? I have not been blogging for the past several days because this damn new drug kicked my little butt. I thought I was home free on Wednesday, the day after my infusion, because I was feeling so good. Well, Thursday came and I sped down hill fast. I had my 3rd expander fill Thursday morning and then ran to Macy's to get Fisher some new pj's that weren't two sizes too small - poor kid, he was looking like an orphan at bedtime. Anyway, as I'm cruising the clearance racks, I start feeling really weird, like, really, really weird. I cruised home, hopped into bed and pretty much stayed there until Saturday morning. Our sweet friends Seth and Jen brought dinner Thursday night and I was up for a couple hours, but I was more zombie than human.

If you really want to know the details, my symptoms were pretty ghastly. The worst of it was incredible bone pain. What's bone pain you ask? Well, it's like someone is tightening your bones in a vise, all over your body. The worst of it was in my pelvis, lower back, thighs and calves. Then it would start up in my feet, ankles and my chest. It kind of felt like fireworks exploding in these different areas of my body every few seconds. I tried every drug to make it stop: Advil, Tylenol, Vicodin, Xanex, Valium. Nothing worked. Oh, and there's more. Then I started getting fevers. They lasted from Thursday night through Saturday morning giving me chills, sweats and terrible headaches. Obviously, I had (or have) some minor infection somewhere that was wreaking havoc. I was a mess!

My most wonderful oncologist, Dr. Wendt, was with me the entire way through this ordeal via phone. He put me back on antibiotics which squelched the fever, thank goodness. The bone pain is actually a pretty common side effect of the Taxol drug, but I think my severe reaction, combined with the fever, was worse than normal. We are not sure if the pain was just from the Taxol, or from all of the drugs they give you with the Taxol to suppress any allergic reactions, or from my Neulasta (white cell building) shot or a combo of all the above. So we now need to make the big decision of keeping me on my scheduled three more heavy duty Taxol infusions over the next six weeks, or possibly doing 9 more lower dose Taxol infusions every week for the next nine weeks. Doing it every week for nine weeks might be a better option since it means I would probably avoid the horrible pain since I'd be getting less of the drug every time. But, every week is just kind miserable. We'll be making this decision on Wednesday when we see him.

So as for now, I'm back in the land of the living, suffering just minor bone pain and strong fatigue. I'm off to bed with hopes for a much better start to the new week. Sorry for the downer post, but I want to be honest about what I'm going through. Good news is I'm feeling better now. Oh, and Nick was a great Dad all weekend, swimming with the kiddos two or three times a day so I could rest and recover. I think he's looking forward to going back to work so he can recover from his weekend!

With love and more honestly than you really wanted,
k

Wednesday, July 7, 2010

One Down, Only Three To Go!

Yay Taxol!! I'm so happy to report that my new chemotherapy drug that I received yesterday is significantly easier to tolerate than my last four nasty cocktails. No chemo hangover today!! I was at my oncologists office for what seemed like forever because of all the extra drugs they gave me to counteract any possible allergic reactions to the new medicine, but I think it worked so I can't complain. I was able to eat a big dinner and even dessert last night and my appetite is still strong today. I'm noticing some weird sensations in my palms and my cheeks were pretty rosy today, but my nurse Lyndsay said that's all normal when I saw her today for my white blood cell boosting shot. I might see more symptoms over the next week or so like foot and finger pain and/or numbness called neuropathy, my finger nails may turn darker and I may experience a bit more bone pain as my bone marrow tries to make more blood cells. I know that all sounds pretty loco, but really, in the scheme of things, it's not bad at all. Being able to feel well enough to spend quality time with Nick and the kids is a great blessing, especially when I'm supposedly in the thick of it here. Only three more chemos to go before radiation! I chatted with my big brother Mike in Germantown, Wisconsin from the chemo chair yesterday and he said, "Wow, this is going really fast!". Not from my seat, these past 2.5 months have felt like an eternity.

Tomorrow I'm back to my plastic surgeon for my 3rd expander "fill" and Friday I see my acupuncturist. I'm kind of getting into a groove here. I'm desperately looking forward to being done with everything, meaning chemo and radiation, by mid October, and joining the real world again of focusing on mothering and wifing (is that a word?). I'll still have many doctor visits and then my implant surgery in fall of 2010, but that stuff seems pretty minor. I'm doing this, I'm getting through it and I'm pretty darn proud of myself, and Nick too. Who knew we had this kind of strength? I now need to dream up our next big adventure... Something without needles this time.

Sending love,
K

Monday, July 5, 2010

Best 4th Ever

 












Happy Monday evening! It's the eve of my 5th (of eight) chemotherapy infusions and my nerves are starting to fray. I'm optimistic about my new drug, Taxol, as I keep hearing from people who've been there that it is much easier to tolerate than my previous drugs. It's just hard going back to chemo after such an amazing long weekend. I really have been feeling great these past few days, and I know that walking into my oncologist's office means that I'm setting myself up for another week of not feeling like myself. Aargh. Tonight I've been prescribed to take a wild combination of drugs to offset any possible allergic reactions I may have to the Taxol. Here's what I have to take: 5 (yes, 5!) steroid pills, an extra strength Zantac and two Benedryl. I don't really understand what this whacko combo does, but I'm a tad freaked out about the steroid pills. I'm not worried that I'm going to grow a beard or anything, but I know these pills mess with my sleep. I know this because I've had to take them before and I accidentally took too many (oops!) and those were the nights I was blogging around 3am because I could not sleep. And that was only on 1-2 of those pills, but 5? Oh man. I'll let you know how it goes.

Back to the fab weekend. We had lots of family time with the kiddos which included seeing Toy Story 3 (which is wonderful by the way), lots of time in the pool, out to a dinner and a lunch, an at home date Saturday night with Nick where we watched Footloose (I'm not kidding), plus we hosted a 4th of July party on Sunday. See? I told you I was feeling good. Our party on Sunday was just perfect. We ended up with about a dozen friends and their kids swimming, eating bratts and then the highlight- watching fireworks from our front yard. We live right across the street from Phoenix Country Club, which does a big fireworks show, and we have a perfect view. Up until the show began, all the kids were running and playing wildly around the yard in anticipation. Fisher asked at least twenty times, "are they starting yet Mom?" I so love that "waiting for the fireworks to start" feeling.

Sitting on homemade quilts, I had Jenny-Jane on my lap, Fisher by my side, and Nick next to him. I relished every bit of excitement in the air and every shriek of happiness that came from their mouths when the colorful explosions finally started. We realized that it was the first year Fisher was able to stay up late enough to watch the fireworks and he loved every second. Jenny-Jane was so tired, but she was a huge trooper and watched through the grand finale. Everyone carried their over tired kids to their cars with smiles on their faces, grown-ups and babes alike.

I have vivid memories of my own childhood with my best friend Jenny and our parents doing the exact same thing. Sitting on quilts, waiting what seemed like forever for it to get dark enough for the show to start, and then oohing and aaahing at every beautiful explosion in the sky. These kinds of special experiences are like asterisks in the story of my life. I never want to forget the joy of fireworks, both as a child and now as a parent.

Just the thought of the fun from last night is sending me to bed with a smile on my face. I'm signing off to go take my handful of pills. If I'm up tonight I may do some more writing, let's hope not. My oncologist suggested I could tie some flies for Nick during my steroid induced insomnia, he thinks he's pretty funny.

With love to everyone near and far,
k


Thursday, July 1, 2010

A Piece of Peace

As you might imagine, the paperwork and financial responsibilities that go along with cancer treatment are pretty overwhelming. Nick and I really didn't have the mental or emotional capacity to dive into the bills until a couple weeks ago. I kept them organized, of course, Explanations of Benefits from the insurance company in one folder, and the actual bills from hospitals and doctors in another. Every day more would arrive in the mail, and I'd put them in the correct folders. I'd look at them, but always thought "this stuff needs serious attention, I'll work on them on my good weeks". But I never did. It was scary stuff, especially when I'd see hospital bills that read $39,740. Thank God our health insurance is good and our payment portion on a bill like that was under $1,000.

So when I told Nick I finally needed to tackle the bills, he brilliantly said in his very entrepreneurial way, "let's hire someone to help us". A definite "ah, ha" moment. So we called upon Nick's business accountant Judy who has been working for us for over ten years. She met me at the house this week, and I timidly laid out my folders of bills and insurance explanations, expecting her to run for the hills. This lovely and patient woman sat with me for an hour and a half taking copious notes about all my doctors, surgeries and procedures. She gathered all my papers and stacked them on her side of the table. They were not on my plate anymore. She explained how she will make all the phone calls to providers to ensure accuracy of the bills, double check all the insurance payments, make spread sheets of what needs to be paid and even try to negotiate lower fees from my doctors. Everything I wanted to do myself, but was too overwhelmed and too frazzled to undertake.

Before Judy left our house, she said there was one thing she would not do. She would not except payment for her services. She explained how Nick had been so good to her for so many years and this was one small way to say thank you to him and our family. I am still overcome by her generosity as I write this now. I wrote in my last post how I was looking for some peace from the fears of this disease, and just days later, I am handed this incredible gift of peace from the worry of financial disorganization. A weight has been lifted from our shoulders as we are confident that our bills are in order and we will be paying only what is rightly due.

Thank you Judy, for this gift of peace. With all my heart, I truly believe in the mantra "Desire, Ask, Believe, Receive". The Ask part is the hardest, but it's been proven to me time and time again that it works. Try it for yourself and let me know if you receive a few of your own mini-miracles.

With love
k