Wednesday, July 28, 2010

Jump Happens

So I'm in with the tan team, Tuesday, July 27. The room is crowded with my nurse Pat, Brandea Paulk, PA-C, and Derek Stirewalt, MD, all masked and gowned, masked and gloved, following clinic isolation procedures since I still test positive for para-influenza virus. Kathy LeClair is with us too but she isn't gowned up. My threat could be deadly for other immune suppressed patients. We go over my questions and I report again that I still can't jump. Even though I'm working diligently in physical therapy, it seems that no jump continues to be symptomatic of my post transplant condition. Stirewalt says my condition ranks in the upper 90% of patients at the clinic and then I hear him say "discharge in a couple of weeks." I stand up from the patient exam table, put my water bottle down, bend my elbows, hunch from hips and knees and launch. My feet make it off the ground. I jump two more times in succession for good measure laughing and exclaiming "I'm jumping. Did you see that. I jumped." And, just in case they didn't see it even though I'm right in front of their faces in a very small room, I jump again. My body was waiting to jump for joy.


Monday, July 25, Kathy LeClair takes Korrina age 10 on the bus to Camp Sparkle, Gilda's Club. Kayla age 7 walks to Hutch Camp in the Pete Gross building. I walk Shammond age 11 to the Center for Wooden Boats on Lake Union, Day One, sailing lessons. Joshua age 11 is at the week-long over nights at Camp Indianola, United Methodist Church. Micala age 12 stays home. 1:30 blood test for me. 2:00 bone marrow biopsy and skin biopsy. I walk home with the big bandage. Since the para-influenza virus is still with me, I'm in isolation and not allowed on the SCCA shuttle. Shunned from the shuttle is a blessing in disguise. I'm getting good exercise on the Seattle hills. Mercer north of Minor is no gentle incline. Looks straight up from the bottom. I get back to the Pete Gross House in time to see Kayla and Shammond heading out with Debbie and Megan, Side-by-side volunteers enroute to dinner and paddle boats on Green Lake. They will rendezvous with Micala who has finished her one-hour with Zoie the tutor and gone on to guitar lesson with a volunteer driver. Getting in the door at the Pete Gross House, I have to sit down, take a load off and breathe before I get into the elevator. A healthy schedule for all of us.

Monday, July 26, 2010

Sharing my secret

If you ever have a bone marrow biopsy make sure to sing. Don't wait until you are laying on the table worried. Don't wait until the needle starts poking to drill the bone. Start singing the moment you enter the room. When you are laid on the table, keep singing. As the doctor positions you on the procedure table, be singing. Front end load the procedure with song. Sing from beginning to end and eventually you will hear "all done." And, it will be. And, maybe you will laugh out loud because you won't believe it finished. Then and only then can you shake and cry and know you are through. It doesn't matter what you sing. Just carry a tune.

Sunday, July 25, 2010

Devotion 61, Day 39 Post Transplant

The devotion of God is certain because God carried me one more day.

Devotion 62, Day 38 Post Transplant

The devotion of God is certain in view of the University of Washington Hospital from the Mount Lake Cut waterline instead of looking out from inside the window on the 7th floor.

Devotion 63, Day 37 Post Transplant

The devotion of God is mirrored in the freedom Chris Cunningham extends when he invites our family to leave the confines of our apartment and cruise Lake Union in a home made boat.

Devotion 64, Day 36 Post Transplant

The devotion of God is demonstrated in Kathy LeClair's choice to remain with us as care provider when I am released from the University of Washington Hospital. Thanks be to God.

Friday, July 23, 2010

Hoop Dream

Shammond, Joshua, Kayla, Kathy and I are at Cascade Park a few blocks from the Pete Gross House. The kids are playing basketball with the park regulars. Reggie, David and two others are passing the ball to the kids and encouraging every basket they make. I'm sitting on a big rock, watching. Spent cigarette butts litter thicker than the landscaping bark around the base of my boulder. The spirit of play is so encouraging that I ask if I can have a turn.
I get up from the rock, wobble to center court and stand under the basket. When the ball is handed to me, my tears start. I am holding the ball looking up at the basket and my eyes are blurred from the wet. "Mom," says Kayla. "We play for fun." Like why are you crying? Because fun feels so good in my hands and I haven't felt fun for too long. I can't jump. My neuropothy and post transplant muscles won't propel my two feet off the ground simultaneously. In physical therapy, I'm working to jump. I got a goal to jump. I am standing under the basket and I hear Joshua say "Do it for grandpa Lloyd." And Kayla chiming in "You can do it for grandpa, mom." The kids know my dad was a state basketball champion in Illinois. They call out his name to cheer me on.
I fire the ball. It didn't graze the bottom fringe of the hoop. Joshua retrieves the ball and puts it back in my hands. "Step a little closer mom," he instructs. "You can do it mom."
I've spent the past three days in the family resource center at the Seattle Cancer Care Alliance and sent out an appeal letter to raise money for our mounting debt. I've heard my car is molded on Washington Island. the house is molded and uninhabitable. My tan team at the Seattle Cancer Care Alliance says that I won't be able to vacuum or clean mold for over a year because of my infant immune system. Joe's doctor called and said that if Joe has Alzheimer's then he is not capable of parenting. The ball is in my hands and I'm trying to make a basket. I'm not crying because I can't make the basket. I'm crying because the ball is in my hands.

Tuesday, July 20, 2010

No Chicken

Another lumbar Puncture is scheduled for 2:30 today. Seven-year-old Kayla doesn't want to go to Hutch Day Camp today. She wants to go with mom. "I don't think the doctor will let you come into the procedure room with me," I explain. "The doctor uses a needle to tap into my spinal cord and draw out spinal fluid for a test. After the spinal fluid is withdrawn, the doctor pumps in chemotherapy. The chemotherapy goes into my spinal fluid and baths my brain in chemotherapy.
Kayla put her hands on her hips and spread her feet apart so that she had a good sturdy stance and looked at me straight on. "They may think I'm little mom but inside I'm strong and old. If I can see a chicken die and have it's head cut off and run around for five minutes, then I can be with you in surgery."
Kayla went to clinic with me. I reported Kayla's intention and resolve to the team. "O.K., she can come in," the doctor said, "but she can't bump my arm."

Monday, July 5, 2010


As I boarded the Delta Aircraft for Detroit on Friday, July 2, the cockpit door was open so I stopped to speak to the pilots. "I am a bone marrow transplant patient, 57 days post transplant, on my way to see my husband Joe who is delirious and restrained in the hospital in Lansing, Michigan. The Seattle Cancer Care Alliance must really trust you guys because they don't let anyone out before the required 100 days. They gave me 48 hours to get back to the Clinic."
As transplant patient, wife and mother, I was more afraid than I had ever been in my life. My infant immune system is only as strong as the medications that are pumped into my body. To be with Joe, I would enter the infectious disease world of a general ward hospital. Joe didn't know his name nor where he was. I now had parenting responsibility for all six children.
"I think I need some wings," I said. "I'll go talk to the steward about it."
"You won't need to do that," the captain answered. He unpinned the gold wings from his uniform and handed them to me.