Wednesday, September 9, 2009

By Far The Hardest Thing

John Denver's song "Follow Me" starts with this line: "It's by far the hardest thing I've ever done ...." It's a love song, not a lament from a cancer patient who wants to go home, but the words ring true for Sue; This stem cell transplant is by far the hardest thing she's ever done.

Today Sue has said on more than one occasion she will never do this (stem cell transplant) again and she would never tell anyone to "follow her" down this road. [If you are considering a stem cell transplant, stay tuned. I don't think this will be the last word. But for now, it's where she's at.]

Last night Sue reached an emotional low after three consecutive days of nausea, diarrhea and pain. Three days of neutropenia. The drugs, and there are a lot of them, have also left Sue a bit confused. After I left last night, Sue got focused on a new plan and didn't sleep much. I left the hospital at about 9:30 p.m. and got to sleep around 11:00 p.m. I got the first call from her around midnight. Between midnight and 4 a.m. she called 3 more times. She wanted me to go down to the hospital and get her out of there. Being sharp and astute, I sensed an emotional crisis brewing. I got up with the 4 a.m. call and came down to the hospital.

I got here at 5:20 a.m. and had to go through a security screeing to get in. Sue was intent on being discharged today and going home to recuperate. I told her I wasn't a medical professional and I couldn't make that call, though I knew it was an absurd and impossible notion. She insisted on having and holding her cell phone so she could call her friends for support for her plan. I had to stop her several times from calling all of you support ladies at 5:30 a.m, so you can thank me later for that. She called nurse Debbie and nurse practitioner Jennifer in Fresno at about seven-thirty to run her plan by them. Rightly, they did not support her plan to be discharged at the lowest point of neutropenia -- at a time when she is getting 24 hour care from top medical professionals.

The doctor came in at 9:30 this morning with a bad news, good news approach that settled her down a little: The bad news was that she wasn't going home today or even this week. End of story. Stop thinking about it. The good news was that her numbers are just starting to go up today. Her white blood count doubled from 0.1 to 0.2. That means the stem cells have embedded in the bone marrow and the bone marrow is starting to work again producing blood. He predicted the numbers will go up a little bit again tomorrow and then start rising rapidly. He predicted she will start feeling better each day from here on out to her discharge. Da Vinci couldn't have painted it better. Just the right combination of firmness and hope.

Vuon Le from Viet Nam posted a touching comment to this blog a few days ago. She had great and timely words of wisdom for me which have been of some good effect. She said: "Give her much more love, dear. And think that she is happy with u. That is all we must do to her. I'm sharing the feeling with u. May Gods bless u and all of us. Just let her feel the warmth of ur hands very time her heart beats. Give her my best regards. A friend from Viet Nam,Vuon le"


  1. I told my family that Sue was in the "train room". They knew right away what it meant. I had a night like hers in a room at Fresno Community that was right by the train tracks. With the train going by every half hour and tons of IV meds, anesthesia, fear of moving, pain, anxiety and more pain, by morning I was bargaining with everyone from doctors to cleaning ladies to get me the **** out of there. It was a feeling of being terrified and out of control. Today I'm right there in the "train room" with Sue. I know it's hard on the family, too. You're in my prayers constantly today and always--standing by...All aboard!

  2. Praying!!! Sorry the last days have been so rough. Encouraged that numbers are starting to come up.

  3. George, Sue is sure lucky to have you. I am so thankful that you are able to be there for her. I wish there was something I could do. I am thankful that you had her wait to call me, but I can be called at any time. If she needs to call me, I will not mind.

    I too wonder why those who cause so much suffering of others (prisoners) are given so much. Maybe they should have to have their family members provide there medical insurance. Cobra. Can you imagine. They definitely don't deserve a BMT on my tax dollar! They should have to raise the money for it, a bone marrow drive. That blood-bot is so funny. I have never seen anything like it.

  4. I once heard my Dad say: "I guess it is for better or for worse. I suppose this part is the worse." Love is a verb, and you are loving her as God intended!

    Neutropenia is more than difficult. Each day is monumental when spent existing moment by moment. Life and the world seem to stand still. I can not imagine what my Mom went through! But I am so grateful that she saw me in my wedding dress, met my 1 day old son, held my baby daughter, loves my kids, and created more memories since transplant! Hang on!

    You are dipping down on this nasty emotional roller coaster. Please hang on for the upward swing, it should come. Moment by moment - filled with love and prayer!

  5. I remember saying during about day 6 or 7 after the getting my stem cells, "I don't care if I live or die". Today I am well and very I totally understand her thoughts, but it will be worth it all. To be off drugs is awesome. To hold two new grandbabies and not need naps to get thru the day....