My prince is taking me home today (from Nancy)

All,

Today Prince William and Katherine Middleton are celebrating their royal wedding day and Tom and I will be celebrating my return home. Tom is picking me up @ 6:00 pm and I will begin a long recovery process @ home.

Tom, this e-mail is for you. I want to thank you for being the rock that has held me through this cancer journey. I will never doubt your love and commitment to our vows. I know this journey has been especially difficult for you; caring for me, our pets, your mother, working everyday and juggling our finances. You have given " keeper of the flame " new meaning.

I love and appreciate you,

Nancy

Resurrection day

Good news, everyone...

Nancy's counts started climbing today, right on schedule! It's Day 12 since her stem cell transplant, and this morning everything is higher than yesterday. This means that the transplant is engrafting, forming new bone marrow that is creating her new blood supply and new immune system. If all continues to go well, she should be coming home late this week.

(YAY! And....yikes! I've got to get the carpets cleaned! :-)

It seems divine that her resurrection is today, the Easter celebration. This is a major step in her recovery. To put this in perspective, there seem to be about four major hurdles, and she's clearing the third hurdle now:

        initial chemotherapy to put her leukemia in remission

        finding a stem cell donor

        receiving the chemo and stem cell transfusion, and creating a new blood system

        avoiding bad reactions between her body and the new blood system

Assuming her counts continue to go up, we are now entering the time when her new immune system and her body will adapt to each other. This will take several months, and she will be on medications and visiting the UCSF clinic twice a week.

But I want to be present for today, and celebrate her progress. There will be plenty of time later in the week to plan for the future, talk about how we are setting up caregiving for the next few months. Today is wonderful, just as it is. Happy Easter!

With love,

-tdc

Spirals up

Executive summary: all is going well!

Nancy is doing great. We had the weekend together, she had several visitors Saturday, then I stayed overnight on the Rack, uh, the chair that pulls out into a bed. After un-creaking my joints yesterday morning, we watched a movie and generally had a nice day together. She has an expected side effect, a bit of mucositis -- an inflammation in the mouth or throat -- but not enough to make it hard for her to eat or swallow. She's getting out and walking, eating regularly, doing email, and planning enhancements to our house :-)

Her doctor tells us to expect some fever over the next few days, and we joke with him about how these side effects are manifesting because of his warnings. The fact is, it's reassuring to have an idea of what is coming. This is the transition week for Nancy, and in 7-10 days, her counts should begin to climb. If everything continues to go well, she will be home in two weeks.

Personally it's been crazy in my life for the last five days. I've finished our taxes, and my mother's taxes, while my mom (I'm her guardian, she has advanced Alzheimer's) went into the hospital on Wednesday with some rectal bleeding and a urinary tract infection. So I've been visiting both Nancy and Penny in different hospitals, doing financial wizardry at night, and keeping up with my day job. Yesterday afternoon, I brought my mom home to her assisted living facility, which is a big relief. Penny seems fine, the UTI is gone, there's no more bleeding. My mom no longer recognizes me, speaks little, and needs help with everything from dressing and eating to bathroom chores. She is on a spiral down, with some medical issue every few months, less and less capacity each week. It's incredibly painful for me to care for her through this long unresolved good-bye.

The contrast is a little startling. Nancy is on a spiral up. Nancy was severely ill in January, so neutropenic that we were dealing with infections and antibiotics and transfusions and stuff for weeks, just to get her to a place where the leukemia was in remission. Now she's neutropenic again, at risk of infection, getting transfusions...in service to her full recovery. The stem cells are settling into her bones, developing into new marrow tissues. I'm relieved and excited to watch her transformation, something new coming into existence within her.

Not to be too dramatic, but I feel like Shiva-Watcher, experiencing creation and destruction cycling around me. It is a lot to hold, to be open to. Rrr, my heart opens, and it's not all flowers and music. These are fundamental forces, powerful, impersonal. I'm privileged to glimpse them. Perhaps Shiva does not create and destroy, he simply experiences, and I am having a moment of learning the Tandeva dance of the Nataraja. This is what is happening within Nancy also, as the old dies off and the new comes into being.

-tdc

D-Day update, all quiet on the western front

Nancy asks me to report...her nurse practitioner says she was a perfect patient, the transfusion went great, and she is doing well. She truly appreciates everyone's support, and all the kind emails.

So now we are into the next waiting phase. The stem cells are now circulating around, finding their new home in Nancy. Nancy's counts will be dropping over the next week, then should start to climb as her new bone marrow starts producing blood in 10 to 14 days.

Warm regards to all of you,

-tdc

D-Day

Good morning!

Today is the day. They are preparing to do Nancy's stem cell transplant, and the procedure will be starting shortly. It's now 9am, and she's getting a variety of drugs to combat nausea, transplant reactions, and infections.

It's not really very dramatic. There is cart in the room, with a water bath coming up to body temperature. They will be bringing Janet's frozen stem cell donation shortly, and thawing it out in the bath. There are five bags of stem cells. The stem cells will be given to Nancy like any other kind of blood transfusion. I think we have several hours of activity ahead.

I'll send another note with an update later this morning. Please keep her in your heart today.

-tdc

Back in an alternate universe

Hi, friends

As the resident I would agree coming back to UCSF is odd and on some level unsettling. I know that I'm here with the purpose of transforming my immune system but I have to remind myself of this because the process and experience feels anything other. Imagine being admitted to a hospital feeling good and then have treatments and procedures that start to render your well being. This is my present experience. I am beginning my third day of chemotherapy. My blood levels were tested @ the Mayo Clinic in Minnesota (imagine that) and the results indicated I required an increase from 45 mm to 60 mm of chemo. I feel restless, bored, and anxious. I think I need to meditate and visualize the love end support from all of you because that is what will get me through this period.

Love,

Nancy

Relay for Life!

Hello friends and followers of Nancy!

My name is Kristen Jones and I am Nancy's niece and a current junior at Cal Poly, San Luis Obispo! I am currently the chair for my sorority's Relay for Life team and actively campaigning to raise money and awareness for the American Cancer Society! After I received Nancy's news it became abundantly clear to me that since I am unable to physically be there to support my aunt through this truly difficult time in her life (which really kills me!!), I would work my butt off to raise as much money as I can to help with the cause! Though I know it will not be going directly to Nancy, it will be going somewhere that could potentially help her and everyone else out there fighting, so that nobody in the future will have to receive that awful news from their doctors, loved ones, or friends ever again!!

If you would like to help this amazing cause, donations are GREATLY APPRECIATED and are accepted at:

http://main.acsevents.org/goto/kjonescp

Any and all donations are welcomed!! Big and small we accept them all!!

You are also welcome to purchase a Luminaria for $10 in support of Nancy which will be displayed around the track the day of Relay! (If you do let me know and I will take pictures of them and send one to you and one to Nancy to show her your support!!)

I know that each and every one of you has helped push and motivate Nancy through this tough trial in her life and for that I am sincerely thankful!! She is the reason why I relay and I hope one of the reasons why you chose to help us fight back against this evil disease!!

Thank you for your time and support,

With love,

Kristen Jones

kjones15 at calpoly.edu

Back in an alternate universe

Hi, friends.

It’s an odd life experience to be back in the UCSF hospital. I don’t know what Nancy would say about it -- she is the actual resident, I only visit -- but for me, it’s like visiting a neighborhood where I grew up. I know where everything is, but it’s strangely different. The nurses are familiar even though we’ve only been away from 11-Long for six weeks. I know the protocols, the bathroom locations, when and how to sanitize my hands, where to sit in the room so I’m not in the way. But the room is different (view to to the south, hospital buildings and Mt. Sutro forest) and the purpose of transforming Nancy’s immune system creates a feeling of intention.

So far, things are going pretty well. Her sister Janet finished with stem cell extraction today, so Nancy’s donation is ready. It’s day 2 of chemotherapy, and the docs have already started giving her vancomycin (an antibiotic) because her skin looks a bit red where her catheter was inserted, possibly some infection. She was tired by 9 last night, not surprising as this is a pretty heavy chemo regimen.

-tdc

(PS - see http://en.wikipedia.org/wiki/Hickman_line for catheter info.)

Back to the worst, most expensive hotel in San Francisco

Good morning!

My deep thanks to all of you who could attend our gathering yesterday. There were more than 30 of us, and Tina Benson helped us put together a lovely, supportive ritual experience. We had our circle on the upper deck, with full sunshine, a slight breeze, and the sound of water running down Fairfax Creek across the street. Many of us have mild sunburn today :-)

This morning, I took Nancy back to UCSF, where she is getting a 'port catheter' installed in her upper chest today (http://en.wikipedia.org/wiki/Port_%28medical%29) and taking up residence in the heme-oncology ward in Long Hospital again. She will be back in the same place, the 11th floor, for the next four to six weeks, for her stem cell transplant. Just like her prior stay, you can visit if you are healthy, and you can always call her (starting tomorrow) on her cell phone.

In the mean time, her sister Janet is getting shots each day to boost her stem cell production, and she will be spending a day at the hospital later this week so they can be collected. The actual transfusion of stem cells should happen around April 12th, and Nancy’s counts should begin to recover two or three weeks after that. There are many articles on the web describing the procedure and the risks, just search for “allogenic stem cell transplant”.

It feels very different coming back to the hospital by choice. The first time, it was all about finding out what was wrong, and saving her life. Once she was in remission, she came home, and she has been feeling fine and doing her life for more than four weeks. Now Nancy chooses to return to the hospital, and step into this procedure because the cancer is already on it’s way back, and cannot be cured any other way. We drove through the back roads of Marin county last night, admiring the green hills and running water, joking about how we would rather just head up the coast and hide out at a bed and breakfast for a few months. But no, not this month. We choose the fire.

Love,

-tdc