Saturday, June 27, 2009

What it's all about

Tonight I'm doing something unusual for this blog - posting a story that has nothing to do with healthcare reform or policy issues but has everything to do with what healthcare is all about: keeping people alive and healthy.

Mike Guanci is a terrific sales guy at my company, TimeTrade Appointment Systems. Last summer his wife Patrice, age 39, had lower back pain (among other things), was found to have a fractured vertebra, and was diagnosed with non-Hodgkin T-cell lymphoma. The odds were not good. With four young kids the situation was especially poignant - not that there's ever a good time to have a rough prognosis, but having kids makes it rougher.

Patrice underwent an autologous stem cell transplant at Dana Farber Cancer Institute in Boston. It's an arduous treatment in which your entire immune system is killed off, including the disease, and then your own stem cells ("autologous"="your own"), harvested before the treatment and reinjected, grow a new immune system from scratch. During that time you're entirely vulnerable, and almost literally live in a bubble in the hospital.

Needless to say, when this works it's nearly a miracle. And it worked.

Here's the notice Mike posted on Patrice's CaringBridge site Thursday.

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Hi Everyone,

Today was a pretty big day in Patrice’s recovery. They did a PET scan on her to see if any lymphoma had popped up since her transplant in January. Thankfully, there’s none. They did see something in her nasal cavity that they want to take a closer look at but the docs think it’s a healing cold/allergy – and nothing to do with her lymphoma. They will take a closer look (to close the loop) via a scope but the doctor was confident enough that tomorrow they are going to remove her port (the access way they implanted in her nearly 9 months ago)

It’s hard to believe it’s been nearly 11 months since she was diagnosed. When we arrived at DF in mid-August of 2008, which seemed like 5 minutes ago (or 100 years ago on some days), they set our expectations right up front. She was going to go through a chemo regiment over 2 months (6 treatments every other week) – then, she would rest up and prepare for the Stem Cell transplant in January. After her stem cell (21 days in the hospital,) they told us that she would be confined to the house for 90+ days after. When you add that all up, they asked us to be ready for one year of treatments.

It was an incredibly emotional day for us both. Minutes seemed like hours, the day like a week. Finally, the doctor and the team arrived in the room and gave us the news. I must admit it was tempered happiness. I bought a bottle of champagne for this day – but it didn’t feel like a celebration, for some reason. Don’t get me wrong, we are thrilled – but when you are at Dana Farber, you see others who are battling so hard, for their lives. Not all will make it. In fact, not 5 minutes after we left the exam room walking on cloud 9, we walked by a teenage boy, bald as a cue ball, with one leg, headed in for treatment. It’s sobering, to say the least.

I’ve learned a ton from Patrice’s doctor. The high isn’t too high, low isn’t too low. That’s the way we are treating this. Lymphoma will always be in our lives (God willing only as a memory) – Dana Farber will always be in our lives (and based on the brand new 16 story building they are erecting, a lot of other people’s lives too)

The support our family has received has been overwhelming. It’s humbling. There have been many times this past year when I had the feeling I was in a boat with no oars headed for the falls. And someone on this email list would step up. With a meal for the kids, a kind email, a text, whatever. I can’t thank everyone enough. I wouldn’t recommend this experience for anyone. It’s like recording your life, live. There aren’t do-overs or rehearsals. We made some mistakes along the way, but overall, I’m incredibly happy and think our little family was chose by the “Big Man” for a reason. To see our littlest one, Caroline, bopping around Dana Farber, not afraid, is a gift in its own right.

So, we are closing this chapter. And starting another. Patrice’s hair is growing back. She looks and feels better than she has in years. And, she and the kids are headed back to NY for the summer to pick up right where we left off.

A final thought. If you read the blog in January, there was a security guard that I used to give the “knuckles” to each night when I left the hospital. He had no idea who I was but after a week or so, he caught on. Well, I was hoping he was there today. Sure enough, on our way to the car, there he was at the same post. I walked up to him and gave him the knuckles. Not surprisingly, he returned the knuckles and I explained to him who I was (it took him a second then he was beaming) – when I turned to introduce Patrice, I told him this was my beautiful wife who was in the hospital all that time and that she’s on her way to recovery. We both turned to look and Patrice was smiling and as beautiful as ever, and he just mumbled to us,

“God is good, man, God is good.”

Enjoy the Summer!!!

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And I would say, many many blessings on all the people who were called to go into medicine, to produce this kind of result. It is about saving lives, it is about changing the course of disease. And when it works like this, it means there will be a mom at four high school graduations, a mom who might not have been there.

I can't type that without getting lots of tears in my eyes. Blessings indeed on all of you who do this work.

3 comments:

  1. Dave,

    Hi there! Found your blog through June's Change of Shift, (I am in there too), and am now, after reading about Patrice, have a blurry screen. For so many reasons.

    The lady. A mother. Someone who has endured great pain, showed great courage, and drew such strength from her family. You are blessed to know these kind of people Dave. My heart goes out to her, and her entire family through her medical issues. <3

    Then with your note at the bottom, and thanking those that work to make people better, (my rendition obviously, LOL), my heart cries and my brain becomes confused and sad. As a nurse for 2 decades that just made the decision to make the transfer from nursing to retirement, at an age that was certainly not my plan; all due to Disability. To my 16 yr. battle with chronic pain. Hardest decision I've made regarding leaving my love---being a nurse. Because of the pain, my work history is-- a year off, then back to work, then another surgery---another year off...I was under the power of vertebrae growing into my cord; closed foramens; completely 'squished' nerves; a right arm that becomes spontaneous paralyzed at any given time with no warning; the Spinal Stenosis; it goes on and on. These are the causes now of the every day pain, but they also took me away from my passion; before I wanted to.

    I became a nurse to help others, to do anything I could to follow Doctor's orders and work on getting my patients as well as possible in the time we had with them....after falling in love with Hospice nursing, my plan was to get a higher degree and specialize in Palliative care nursing. Mom and Dad died with Hospice care, mom before my nursing, and dad when I was in school (another time taking classes for nursing), and had just worked as a Hospice nurse!! Worked out well as I was his primary caregiver and was blessed to give him what he gave me when I needed him. Love. Care of basic needs in life is what it was; along with being there with him. Mom & Dad were my angels on each shoulder as I drove to the homes of those who were facing last days. I was blessed enough to give them dignity, comfort, medical care, and the best part--listening. I loved it and I miss it all.

    I know we all have our sadness's and challenges and decisions...

    Your life story is absolutely amazing. I am in awe of you. You have experienced what most have not and never will. Your strength is extremely inspiring.

    Please know I will keep your friend in my prayers and know that there are so many in the medical field that truly care and got into it all for the same reason---to HELP someone.

    Gentle Hugs...

    P.S. Sorry for the rambling...just so many emotions triggered after reading tonight!

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  2. No rambling at all, Shauna. A perfect addition. This IS what it's about - people making a choice to gives of themselves to aid others. Thanks.

    I have a feeling that with Web 2.0, just as we're doing here, your ability to give to others has not ended. Stay involved, to whatever extent you can.

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