The Survivor Tree

The Survivor Tree at Ground Zero

On a trip to the Museum of the Native American in lower Manhattan yesterday, Marie and I stopped in my old neighborhood for lunch and to see my former apartment building. So much has changed in the area in the year we've been gone. Two blocks from Ground Zero, buildings are springing up like newborn foals, not just within the Ground Zero confines, but all around the area.

We decided to take the free tour of the site since it wasn't crowded. Even though there's a lot of building going on, with jack-hammering and whatnot, the site was quite serene. The names of those who died are cut into stone facing waterfalls pooling into ponds and recirculating.

New trees are planted everywhere, but one is actually from the original site. It is called the Survivor Tree. Reduced to an eight foot tall stump on September 11, 2002, it was rescued and brought to another site and put on life support. It slowly emerged from its coma and sprouted new growth. .One more trauma to the tree occurred before it was safely returned to its original site. A hurricane uprooted it last summer. They took the tree and planted it in the lovely memorial park. It now stands 30 feet tall and is in full leaf.

As a leukemia survivor, I identify with this tree. May it live a long happy life.  

New York Times Blog You Should Read

A friend of mine from Rhode Island who was often by my side while I had various leukemia treatments, recommended this blog to me:

http://well.blogs.nytimes.com/2012/04/26/life-interrupted-dispatch-from-a-hospital-room/

For many of us, the photos are difficult to look at because they bring us back to a place that was nightmarish. I feel so lucky to be alive.

Be the Match

I wouldn't be here today without a total stranger registering to be a bone marrow/stem cell donor. My donor, who has remained anonymous, spent two days donating peripheral stem cells.

My husband is on the registry, as are my daughter and youngest son. I urge all of you who read this blog to register if your health allows it.You could save a life.

Please visit www.marrow.org

Click now before you forget. Thanks.

Ronni's Right

Thank you, Ronni, for bringing me down to earth regarding self-medication with Lasix. I called my doctor and was squeezed in today for blood work and an exam by the NP.. Blood was wbc 7, hg 13.2 and platelets 200.

It turns out that Gleevec can cause water retention. I've been on it for 3 weeks. The plan (doctor-approved!) is to take 40 mg of Lasix every other day through Tuesday, along with potassium. I'm to weigh myself everyday and track it. This makes sense. It will also make me feel less like the Michelin Man.

Self Medication

Suddenly, my hands were puffy and my arms heavy and tight. Let's not even talk about the bulging in my lower abs. What abs?

Hmm. I gained 5 lbs. over the weekend without a change in diet, activity level or calories.

Should I call my oncologist or nurse practitioner to see if they think I should take some Lasix? Are you joking?

I just popped two 20 mgs..

And yes, I took a potassium pill.

Many Appointments; All Go Well.

I was having bloodwork and vital signs before 7:30 am. My oncologist took me in early and reported that my blood counts were great, and that the tight skin on my arms seemed softer. This must be due to the tacrolimus ointment I've been rubbing on them. He cut me back .5mg/day on prednisone, added Activel for my liver, and gave me a script for Gleevec, a drug used by CML patients,but now showing positive results for cgvh like mine. No drug is without side effects. Gleevec can make you tired and affect your blood counts in a negative way because it suppresses the immune system.

After I saw my doctor, I had a pulmonary function test, an EKG and an echo-cardiagram. These were baseline tests since I'm with a new set of doctors.

One doctor I'm staying with is my ophthalmologist. I saw him yesterday. I'll have cataract surgery on my right eye July 25, with the left eye to follow 1-2 months later.

My final appointment of the day was with my physical therapist, Linda, who has helped me tremendously in just 2 sessions. My former onc. said nothing could be done about the tendon/muscle tightness in my arms. But she was WRONG. My PT says most of my tightness is due to scar tissue building up where my catheter had been inserted for photopheresis. It was in for a long time. I'm using special scar bandages and Linda is working on my pectoral muscles to stretch them and try to break up the scar tissue. She's also noticed that my clavicle and ribs don't move as well as they should. My left side is also affected by these bone issues.

Somehow, I managed to go to yoga this morning. The iced coffee is delicious and typing doesn't tire me much.

Painkiller Not Required

The tooth extraction was a breeze. Lydocaine and laughing gas made it easy. The doctor did a little bone grafting (bone from a cadaver--no DNA he assured me) and I was stitched up and sent on my way. Eventually I took some tylenol, but it didn't hurt much. I asked for the gold back since Marty might be able to make me earrings from it.

The physical therapy appointment was interesting. All these years I thought I had a rotater cuff injury but I don't. I have very tight pectorals which restrict my movement. To get my strength back, I need to stretch these muscles, which is why I'll go to a number of PT sessions. Also, my ribs don't move much when I breathe normally, so I have to work on deep breathing. The therapist expected to find tenseness in my neck but didn't.

My new PROSE lenses with the higher prescription arrived and I wore them yesterday. I can see much better but they still fog up from debris, which I can whisk away with a q-tip and some saline. Don't try this on the subway.