V's Version

It reminds me of the time when the IT folks at work told Dani that one of her folders was taking up a lot of room on the server and that she might want to clean it out. She had forgotten that she had "temporarily" put our family and personal photos on the server while making a transfer. I am relatively sure that the IT guys saw everything in the folder of just the two of us because they said, "You did what?! You deleted them already?" It was that strange combination of unchecked disappointment and feigned nonchalance. IT people probably see a lot. If they went looking in our folder - they probably saw WAY more than they bargained for! Lucky them.

Danielle,

Congratulations! Your commitment and exceptional sales performance played an integral role in Workshare’s 2007/8 success.

In appreciation of this significant accomplishment, I am pleased to invite you and a guest to join me at the Ceiba del Mar resort, in Puerto Morales, Mexico. Set on Mexico’s Caribbean coast with its white-sand beaches and turquoise water, this resort’s reputation for excellence makes it the perfect location to reward you for your performance of the same caliber.

Regards,

Mike

Mike Griego
Executive Vice President, Worldwide Sales
Workshare

Although Pk can't come (I did ask), he will hold down the fort here and have fun with Uncle Lex. He wouldn't want the 15 hour flight home anyway. Bor-ring! Our whippets will probably be at the Cactus Jungle (see post below) with their whippet, Benjamin.

Berkeley's Cactus Jungle is a web site I adore due to the photography of Peter Lipson and a retail nursery I admire due to the design of Hap Hollibaugh. Today we received this image of the infamous Venus Slug Trap. Eeeew. Nasty. I love it! (Yes - the Venus fly trap has actually caught and is "eating" the slug.)

They have much more beautiful sights so why is it that we are attracted to such oddities? I should speak for myself, I guess!

I feel good. I am stronger every day and went for a walk in the redwoods. I got an X-ray yesterday at the hospital in Santa Cruz (my doctor ordered it "stat" so we could get the results today.) Sigh. I don't understand how much more clear I could get. I asked specifically if the radiologist had the recent X-rays and CTs with which to compare the new films. "Yes", the technician assured me. "Everything is right there in the chart. "

Yet when we got the report back today (had to drive back down to Santa Cruz - pay for another doctor's visit - pain in the butt), the radiologist had written, "No pneumonia. Comparison to older X-rays would be beneficial."

Ummm.

I didn't understand why I was getting an X-ray in the first place. The masses (nodules?) in my lungs were never seen on an x-ray - only on the CT. Apples and oranges really. So I have to get another CT scan - next week - this week. I am not sure. All I know is that I have to swallow more horrid white contrast, get another $6,000 film of my lungs, get another line put in my arm for the iodine and I have to reserve the bathroom for the day afterwards.

Depending on what we see in the CT scan- I face yet another costly lung needle biopsy because the tissue samples were put in the wrong solution despite the affirmative answer to my clearly stated question, "These will be be sent to the dermapathology lab to test for PNP, right?"

If I were not feeling well - I would have more desperation and would welcome the chance to figure out what is happening in my body. But as it stands - I feel pretty good and somewhat inconvenienced by the ineptitude. That's a good sign? I am not sure.

All of this is to say - we know nothing more technically. More, it seems, will be revealed - but only at a slug's pace.

By request of my beloved Dani, I am posting information here about the 10th Anniversary of the V-Day Campaign. For the few that might not know what the V stands for - it is for Vagina, Victory over Violence and, often, Valentine because mid-February is when the Vagina Monologues are most often performed on college campuses and communities around the globe. The money raised at these thousands of performances are used to help that particular community end violence against women.

Eve Ensler wrote the play "The Vagina Monologues" (funny, disturbing, sad and silly stories about the lives of women and their vaginas) 10 years ago and events associated with the play have since raised over 50 million dollars in an effort to end violence against women - with positive and lasting results so far. I brought my father one year and was so glad that I did! This year the play will be performed at the Michigan Womyn's Music Festival under the direction of Alix Olson and I look forward to seeing it.



There are events spanning the globe to celebrate the 10th Anniversary of the play. Maybe one is near your town. There is a handy map and schedule here. And here is an article on the Katrina Warriors where the events at the Superdome in New Orleans this weekend are being hailed as "Super Love".

If you want to hear a fairly recent interview with Eve Ensler (it is somewhat graphic as she briefly describes the life of one girl who did not escape violence in the Congo) - it is worth the few minutes to be inspired by her work. As a survivor of domestic violence myself (as are several members of my family) and the daughter of a woman who did not survive it - the movement to end violence against women (and children) is very near to my heart. Let us do what we can - celebrate where we can and be outraged as is fit.

It seems that the radiologist did not use the right solution to preserve a biopsy for Johns Hopkins so I will have to have another needle lung biopsy if I want to rule out PNP (at least I know what to expect!) I would like to know for sure so that PNP is not hanging over me. I am not sure whether or not to trust a pathologist here on the west coast who has never even seen PNP nor has any way to test for it to say whether or not to suspect it. For now I will take the following (somewhat cryptic) words from my oncologist as very positive. More will be revealed as antibiotics heal (or not) and when I have more radiology next week. As they the nurses said in the hospital: "You've been down there so often, you should be glowing!"

From my oncologist: "Dr. Colby at Mayo said about what our pathologists said, inflammation, R/O infection, consider fungal (cultures take a while), other remote possibilities, Sweet's syndrome (goes with lymphoma), Wegeners (autoimmune), pulmonary pyoderma (goes with colitis.) No suspicion for PNP, but very small biopsy. J"

Ah - the twists and turns! And for anyone who is following our home life - here is a photoshow of my mother-in-law's 81st birthday. She is very happy with her new Mac Mini. It's faster than fast.

Thank you all for your thoughts and prayers. Thank you for your comments and your emails. We feel the love...

The update: my breathing is about the same as it has been for a few days, the coughing fits are less and I have a little more stamina in terms of being able to walk from one end of the house to the other. I did sweep the floor and I did go into the garden for a bit. I continue to take antibiotics for the pneumonia.

If you are, like so many people, more comfortable with the best-case scenario, do not click this link for medical explanations of respiratory failure in people with Paraneoplastic pemphigus (PNP).

Today I got the call from my oncologist that there is no understanding yet as to what the masses in my lungs are. She said for sure that it is not lymphoma and I have decided to take that as good news. The best news, I think, would have been that it is conclusively an easily recognizable and treatable infection. Alas, this was not the news. Why is it never so easy?

I will have to wait probably several months for an answer as to whether or not it is PNP in the lungs. The test can only (to my knowledge) be performed at Johns Hopkins in Maryland and it is common to wait until several tests can be performed at once since it involves monkey esophagus and murine bladder, heart, and liver (I am genuinely sorry, my PETA friends.)

The several phone calls that I have had today have alerted me to something pretty deep. Even with all the love and prayers that make my journey easier - it is not always easy and I am, in many ways, alone in parts of it. I know I say that I am never alone and on a spiritual level - that is true. But I have doctors who do not understand my disease and do not know where to turn for information (not surprising, given the low incidence of PNP.) I have loved ones who really just want to hear that I am well - getting better - stronger - smiling. They want to hear (and so I tell them) that it's all going to be OK.

I am left to contemplate the big picture square on and it is not pretty. Just about every person with PNP has died. That is just reality. Over 30% of them have died of respiratory failure - despite the cancer(s) being in remission, despite a lack of lesions in other parts of their bodies, despite treatments. Once respiratory involvement is detected, it is too late. I have known this since 2003 and it is not a surprise.

The one person that I have ever managed to contact with PNP died of respiratory failure before we could actually speak to each other. I only managed to speak briefly to the man's wife the week that he died.

All in all - it is going to be OK. I will do what I need to do to live the best life I can for as long as I can. But am I scared? Yes. I am. I really am.