Sunday, October 23, 2011

A Heartful of Love....

A week ago was our first fundraiser via HelpHopeLive (formerly NTAF). We had a virtual 5k walk where our friends and family walked at the exact same time, in honor of Kevin, in various places across the U.S. and on two continents. It was called "A Heartful of Love Walk." Everyone got people to sponsor their 5k walk, all the money raised goes directly to helping pay Kevin's medical bills post transplant. The final amount raised isn't in yet because HelpHopeLive is still receiving checks from those that walked.

This walk couldn't have come at a better time. A few days prior we had received the pathology report from the surgeon that removed Kevin's pheochromocytoma tumor. It's good news folks....... benign. We couldn't be happier and more grateful to hear the news. Sure, he's got to get checked every six months for the next ten years because these types of tumors are unpredictable...but, it was what we had hoped for. Our story of hope and love could continue on....


Now if I'm being honest it wasn't until halfway through my 5k to really take in the news that his tumor was benign. Sound odd to you? Let me try to explain. After Kevin was transplanted, it took a few hours for me to really take in what had happened...that after nine months his heart was beating on its own. I was laying down on the floor of the CSICU waiting room. My friend Linda had snapped the photo to the right of me. This time around though it took a few days for the good news  to sink in that it was almost over. (and by almost over I'm referring to his future left arm surgery being the end) It was almost the exact same feeling I had when I realized his heart was beating on its own. If I had to use only one word to describe that feeling it would have to be "calm."

Our 5k walk was in Balboa Park. The very same park where Kevin & I walked as a couple, as expectant parents, as new parents, and as a family. I chose this park for our 5k walk because of the meaning it has for us. I never thought the events of the past year would all come to one "calm" moment  during the walk. The photo to the left here was taken during my calm moment. It looks exactly as I felt at that moment. How coincidental that all of my twin mom friends who had walked every step of the way with me this past year were at my side during this moment. They were, they are, they will continue to be a staple in my life.

The actual day of the walk had meaning behind it as well. One year ago was when Kevin woke up after 11 days of not knowing. A magical moment I'll never forget. If you've been a follower of my mine, then you've read all about this moment...want to read it again? Here's the link to that blog entry: living with an lvad

In closing, I am reminded how fortunate my family is to be loved and surrounded by such wonderful people. How fortunate we are to have the support of our family and friends both near and far. How grateful we are to our donor family. How grateful I am to have Kevin, Kaeden & Quinton....and that with hope and love, anything is possible.

Wednesday, October 12, 2011

Relief

Yes, I'll be the first to admit that I am indeed burning the candle at both ends. I'm not swimming in a pool of wax so I'm not exactly worried just yet.  Everyone knows what Kevin has been through this past year and being his wife, his caregiver...well, I feel that I have walked every step with him. Like we are on this marathon and people on the sidelines keep putting their hands out with water yelling that the finish line is right around the corner!! I wouldn't have it any other way.  He is the love of my life. A year ago I was willing to give up everything just to hear his voice, just to see him open his eyes and wake up. 

Never underestimate the power of love. 

It's been a year of ups and downs....heart failure, LVAD, compartment syndrome, Mr. Insurance (not sure if I'll ever be ready to fully discuss that topic), getting listed, heart transplant, pheochromocytoma tumor, and now recovery. Don't forget we have twin four year old boys. It takes my breath away just typing it all. Can you imagine how Kevin feels? Can YOU?

One year. 365 days.

You know last week I was doing my best to avoid the whole anniversary of what happened when I blinked my eyes. The whole memory of what happened was just unavoidable for me. The memory is still too fresh I guess. Instead of sulking I decided to raise my glass (of scotch) three times. First was for all the doctors & nurses at Cedars Sinai. Second was to everyone that has supported us. Third was for Kevin. The weekend went on.... I finally got around to filling the planters on our front porch with actual plants. The "fall" decorations are out....the scarecrow, the bail of hay with 4 little scarecrows in it.

Life as a parent is unpredictable... you never know what you'll be wiping up or from what end at any given moment... same applies for sick children. It happens when you least expect it. Last thing I wanted to do this particular weekend was go to urgent care. In the end, breathing treatments, a couple of xrays, some stickers, and senseless toys....diagnosis: slight case of pneumonia.

Work has been quite busy these days for me. I welcome work. It's a wonderful distraction and honestly I love my job. Last week I was talking about Scotland, this week Paris, and next week Italy. Come on, my job is pretty freaking fantastic. No joke. Ask anyone that knows me, I really do enjoy my job. Nonetheless, it's been quite busy where I'd leave at 8am and be back home by 7pm. It's a long day.

Fundraising. We've got to pay for everything that Mr. Insurance won't, right? We've signed on with NTAF to help us raise money to pay for Kevin's medical expenses. A dear friend, Mary Ann, whom I've known for years, also I've adopted her as a second mother (in addition to my already Californian Jewish mother Paula), is heading up our fundraising campaign. Our first event is this Sunday October 16. It's a virtual walk. We have friends & family members on two continents that got people to sponsor them in a 5k walk in their own neighborhood or local park. Starts at 12noon east coast time/9am west coast time. Donations are tax deductible. NTAF oversees it all. (convenient link to Kevin's patient page with the NTAF on the top right of my blog)

As this week has moved on certain things have triggered memories for me. Songs on the radio. Pictures. Pieces of paper. Clothes that I haven't seen since a year ago. People mentioning to me that "they know it's been a year." The ongoing statement of "wow, you look good Tracy considering all you've been through."

So, I'll say it again... a year has passed.

Want to know what I think? I wonder if I've said "thank you" to everyone enough times. I hope everyone involved in our lives realizes how grateful we both are. I wonder if that emergency room doctor had a boy or a girl? Is that nice woman I met in the ICU a year ago doing ok...is her dad doing well post heart transplant? Will my kids remember the bad part of this past year?  Why do people park in handicap parking spaces when they're not handicap? Will the memory fade away? Who is our donor family? What circumstances did they undergo to have to make that decision or was he a registered organ donor already? How did I get home that first night?...for the life of me I can't remember. Tomorrow at clinic will they tell us benign?

Lead by example. My father had a heart attack when I was a teenager. A pretty serious one, quintuple bypass before 45. Want to know what I remember about that? My mother. I never once witnessed her letting her guard down, never once saw her stressed out, never once saw her fall apart. Everyone in the waiting room was a mess, including me. Not my mother. She was strong, a tough cookie my mom. If she did fall apart, I never saw it... she kept it cool when I was around. Maybe the apple doesn't fall from the tree after all?

Relief for me is spelled with a capital B-A-B-C-I. For those not fluent in the the Polish language, Babci means Grandmother. More importantly she's coming and will be here in less than 24 hours. Or as my boys said tonight "one more sleep until Babci." I cannot wait to see her and I cannot wait for my mother to take care of me.

Thursday, October 6, 2011

It's out!

The "it" in "it's out" is referring to the tennis ball size tumor that was removed from Kevin one week ago. 

His surgery was one week ago and four days later he was discharged. Amazing. The surgery was just as long as his heart transplant but seemed more nerve wrecking this time around. Thankfully the tumor being removed was the only thing removed. The outcome was what we hoped for, the best case scenario. Unfortunately the recovery is going to take slightly longer than expected. And now in addition to transplant clinic we also have to go to cancer clinic. But I've decided to dub cancer clinic as "the other clinic."

The pathology report isn't back. It's like I can see the finish line but just haven't crossed it yet.