Saturday, May 29, 2010

Day +10 RELEASED!!!!!!!!!!!

Friday, May 29, 2010, 10 days after my stem cell transplant my body recovered to the point that it was deemed ready to be sent home. My mind and spirit got to come along too, but they've got a lot of catching up to do. My emotions are all over the place right now.

Throughout Thursday night I never spiked a fever. My first temp check of the day on Friday registered at 98.6, an exactly normal temp. It stayed that way for the rest of the day. I was physically feeling a lot better, just beyond tired. I really never slept more than 4 or so hours a night for an eight day stretch and sleep was broken all the nights of the chemo infusions the week before so it was safe to say that I was sleep deprived.

The attending doctor and the team of residents and interns came in to see me in the morning and told me that my white blood cell count had completely recovered – 7.5 (from 0.1 on Saturday) – my immune system was back. They told me that as long as I could "stay cool," meaning no fever, that they could possibly discharge me that evening or the next morning at the latest.

I was kind of in shock.

"Would you like that?" he asked.

"I would love that," I said. "Even tomorrow morning would be fantastic."

Before they came in I was poking around my soggy corn flakes in a plastic box mentally preparing myself for starting the course of steroids later that morning and preparing myself for another three days of hospital food and IV pole tethering.

Well, I did "stay cool" all day in fact and because I never spiked another temp, the steroid regimen was never needed. My body embraced my stem cells without a problem. The persistent fevers were just chalked up to my severely compromised immune system - something was going on inside me that it couldn't fight but as soon as those stem cells birthed enough white blood cells at the direction of all those Neupogen shots they started taking care of business and got me back to normal temp.

Craig was there with me for the day and we worked on some projects together to pass the time. I received some potassium and phosphorus repletions to bring up my levels and continued on my oral antibiotics. They still had another fecal sample out for testing so the contact precautions were back on until anything was ruled out so I wasn't allowed to leave the room and everyone in it had to glove, gown and mask – including Craig. I really had no expectations of going home that night.

Then all of the sudden at about 3pm a resident and an intern came into my room and said that they were going to be sending you home. The fecal matter tests came back negative so the precautions signs outside my door were taken down and everyone ripped off their blue paper gowns. They explained that since my counts were back to normal, since my feveral pattern had subsided and since I had no other symptoms that it was safe to say that my body had recovered from the high-dose chemo and stem cell transplant.

I don't remember what I said back but the doctors looked at me and said: "Does that sound good? Would you prefer to leave tonight?"

I just didn't get it.

"So I can go home home, not the hotel? I can eat what I want, drink what I want, go out in public?"

Craig said that as I spoke my voice was so shaky and he could visibly see my chin trembling. He had to keep stepping in to ask questions and talk for me.

They told me that I still should avoid big crowds and stay away from anyone who is visibly sick as I continue to recover. Dr. Cooper and his nurse Erin who saw me later told me that my only restrictions were "no sushi and no digging in the dirt for a while" and that they'd see me on Tuesday.

The doctors told me that they'd write up my discharge instructions and write me a prescription for Acyclovair, the antibiotic I'll continue to take three times a day for six months. As my platelet count was borderline they also wanted to transfuse me with one more unit of platelets before I left just to be on the safe side. They also scheduled me to return to the clinic on Sunday for more bloodwork and any other transfusions as needed. Then again on Tuesday for the same, a breathing treatment to prevent PCP pneumonia and to discuss the rest of the follow-up care.

They left and Craig says to me: "You looked like you were going to cry."

I responded by starting to cry. I was just so overwhelmingly relieved and completely stunned that I made it through. It felt exactly like sky diving when I was 18 though instead of the amazing adrenalin of that free fall, this had been a free fall from hell filled with fear, sadness, confusion and hurt. I jumped out of the plane at 13,500 feet with a little Australian man attached to my back. we were free falling through the sky at 120 miles an hour for one solid minute of pure energy rush. Then together we pulled the cord, the parachute released and the abrupt change in motion was so harsh. I remember the harness around my upper thighs locking so tight against me and our bodies wrenching with the force of the parachute stopping our free fall as it felt we being yanked upward.

When I heard that this proverbial free fall was over, everything around me stopped just as suddenly. It was the abruptness that was the strange part. All of the sudden it was over. I was going from not being able to leave a room or to move my bowels without telling anyone to complete freedom to do whatever my body could handle and complete release to go and start the lifetime healing process. I can only hope that what's to come will be just as beautiful as the slow, gentle, breathtaking parachute descent I took from the sky to a field of grass 10 years ago.

I did not have much to say on the ride home. I was just so happy to have the windows down and the breeze blowing in. We stopped at our favorite pizza place for the Little City special - chicken, melted leeks and artichokes galore. As we waited for my prescription to be filled, we ate it in the car with the windows rolled down. We parked it by a nearby restaurant with a patio that had a guy outside singing and playing guitar. We savored the pizza and listened as he sang U2's "It's A Beautiful Day" agreeing with every sweet lyric.

Then it was home where I inhaled the familiar scents, took a long hot shower to get rid of that lingering hospital film and climbed into bed spreading out in the glorious soft sheets that don't scratch and pillows that are not blue and rubber.

Here I am 11 hours of sleep later with a much clearer head and holding a lot of pride. Things aren't perfect. I'm still very weak, sore, bruised and battered with a persistent cough and chest tightness but I'm on the sweet descent. I'm going to take things slowly and try to decompress and grapple with everything that just happened. I know this will take a long time, but I am so excited for so many good things to come. Most immediately I look forward to a Memorial Day weekend of sun, fresh air, parades and barbecues.

Smiling and at peace.


  1. darn you. you made me cry (after all it's all about me). I'm sooooo excited for you. I'm so happy i read this today. I wasn't going to hop on the blog. Instead, i was going to go outside and appreciate a gorgeous day. you just made it more special by 1 million times (sorry for the poor english). congrats on the great escape

  2. wow thats fantastic!!!!!!!!!!!!!!!!!!!!!!! yay!!!!! im so happy for you!!!!!!!!! i rly rly hope thats the last of everything :)
    I start ICE probably on the 8th, you have no idea how much your blog has helped me with getting my mind around everything, and most of all given me confidence that I can do this shit, too :)

    Hope the rest of recovery keeps going smoothly, keep writing :)


  3. Sooooo happy for you--it will only get better from here on---don't overdue!!! Enjoy the weekend---Hugs to Craig and Sammy and your families!!! Good job!!!! Love Bev & Blake xoxo

  4. So happy to read this. I too cried, but with joy for you. Take it easy, you've been through so much. Nothing to do now but heal. Bless you, and your family, as you go on with rest of your life. Irene

  5. You- my dear are such an inspiration to sooo many! I don't know you. I dont have Cancer. I am healthy, happy, and free. Yet nothing NOTHING makes my heart crazier than reading your blogs. I don't know how I found your page nor do I care other than watching, reading, living it through you and seeing you are a True Hero. You have the stamina, the courage, the family support, the Love of millions that check in daily to see and pray for you. You are living HELL yet you perceive it as another day in a floral park. You see the greatness in everything. The good- the bad. You paint the picture of what life in your world is like. I have to Thank You for opening my eyes as to what a daily cycle of life is like for a cancer patient. You will conquer this and I can't wait for that day! Keep it up girl. Praying for you and yours together!!

  6. Sweet Karin - smiling and at peace really does say it all. I live by "fun and easy". Life really is peculiar and strange but you do have to love it. You & Craig have been on a journey that has changed your life forever...but sometimes "you have to become a chaos to give birth to a dancing star" Have a stellar week-end!! Much love -Karen Jacobs

  7. It's in your words - in your voice - you are in the healing, recovering zone - keep on.

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  8. Hi, I'm Laura, I am Italian.
    Sorry I can't write in English very well.
    I just want to say I think you are a wonderful woman. A big kiss to you. I hope your life is nice from now on.

  9. You continue to be an inspiration, Karin! I can only imagine how fabulous you must be feeling at this point in your journey!!

    :) xo to you and Craig!

    ~ Michelle

  10. I am so inspired by your story. You're a beautiful person, have a beautiful mind and a soul full of love. Remember,you're making it happen and you're on your way.

  11. Karin, I am in awe of your courage, tenacity and positive spirit. Though we've never met, I keep you in my thoughts and prayers like an old friend. Many blessings, hugs and kisses to you and Craig!

  12. crying my eyes out. thank you so much for posting. you're giving me so much hope for my treatment/transplant!