Rivers beyond rivers

For years I have wanted to live by a river. Ever since taking a trip to Quebec City and driving along the St. Lawrence and seeing solemn houses rooted on the banks of that mighty waterway - stationary witnesses to the constant movement past their doors - it has captured my imagination. Yesterday I woke up remembering an even older dream about walking along the Winooski River in Montpelier (Vermont!). For a week now we have been reading about Egypt and the Nile in preparation for traveling to that part of the world in March. Andy was offered 4 tour-managing trips to Egypt this year. I decided to take advantage of frequent flyer ticket, a friend in Cairo and the possibility of a little Egypt exploration with Andy before and after his tour. So the Nile has crept into my river imagination.

We have recently moved Magnolia to a new berth on the Hominy Creek in Asheville. They call it a creek here in NC, but really it is a river. Our new home on Earth is on a friend’s land near downtown west Asheville. Andy has dubbed it an urban woodland and junkyard because it is a wild undeveloped 3-acre piece with lots of junk that has accumulated there over the years. A trailer burned down here 10 years ago and the detritus from that is blown all over. Also my friend has been accumulating potentially useful recycled building materials for a couple of years in preparation for building a structure here some day.

It is our wildest home in Magnolia so far with no nearby house to attach/extend to. It is challenging us to set up basic systems like kitchen (work table, cooking surface, hand and dish washing, food and water storage) poop composting, keeping warm in a metal box and also paths to move across this wild and overgrown land. We took advantage of a special YMCA membership for $10 so we have a warm place to shower, yoga even swim and sauna! There is no electricity on site so we will need to drive Magnolia somewhere to plug her in to recharge her battery bank. A solar panel would be very nice for this, but that is definitely not a functioning system yet! The Hominy runs along the lower border of the land and our campsite is at the top.

Asheville is a good place for us in this moment. Only a few hours from Chapel Hill and Zpora, it is reassuringly close enough, yet far enough to create space. It allows us to disentangle our hopes, dreams and desires and develop separate paths - reclaim our individual choices and encourage a broader perspective on our lives. Zpora wrote on Andy’s birthday card this month “may your year be more directed by your wishes and less by my needs.” And so it is. And the river Cancer flows by…

Our plans are still short term, at least in terms of where we’ll be. We are nearing ready to stop, to put in to port, drop anchor and dig in the dirt. I’ll be back from Egypt on the Spring Equinox. Andy will travel on for a tour in Italy. I am meeting with folks at a very active local radio station here to work on a women’s programming initiative and to feed my community radio interest. I am still plugging away at editing the hours and hours of interviews I’ve done since this journey began (August 2005!). We are also beginning to work on a BOOK about our family’s experience with cancer revolving around Z’s writings through it all. It is tentatively called “Wind On My Scalp.”

I’ve been thinking about my roots a lot lately. What makes home? What does it mean to be home on Earth? This morning I imagined finding a place along the Winooski to park Magnolia... There are rivers beyond rivers.

Much love,
Ruby

clear channel

Pretend you are tuning a radio, the old fashioned kind with a knob. You hear disconnected pieces and parts of chatter suffused with annoying static-
CMV very common… hospital… intravenous anti-viral for 21 days… bad veins… CT scan… no food or water until after PET scan… biopsy negative… no protein associated with lymphoma… nodules on lung… no PET’s done on Sunday… very contagious…ganciclovir… blood levels normal…

Keep tuning and pretty soon you come to a clear signal, weak but rapidly getting stronger. It’s a quiet tune at first, easily drowned out by static and encroaching voices, but it gains in strength as you turn the dial listening carefully and following the signal... Voila! And there it is, the sweet melody of iron and oxygen rich red blood pulsing through strong healthy veins. Like the sweetest imaginable tune playing with the strongest signal it takes over static, and leaves nattering voices behind…

I’m not kidding, and this is only a semi-metaphor. It is a real description of true healing – the kind that happens from within, over and over. This is my experience of the last week, indeed the last 21 months. The frustration and fear of trying to make 1+1=2 or A lead naturally to B and then C, melts away when I tap into this other flow of energy, of life force, of love, prayer, magic, simple but profound caring… It is Zpora’s will, continually held and nourished by this circle of connection that I thank today. A temporary blurring of equilibrium; and vitality returns, and life force builds and renews...

Here is the straight medical situation, just so you know. There is no recurrence of lymphoma, no other sources of infection besides the CMV were found, she will continue with a lower (oral) dose of anti-viral for the rest of her chemo maintenance period (6 months!!!) She has gone back to work. She’s tired at the end of the day (who isn’t?) the odd little lumps (that they biopsied and that turned up negative) are disappearing, and she has no fever. All of the questions, all of the possibilities, all of the tests and the treatment did not lead to any one conclusive diagnosis of this particular blip at this time in this journey. But still, she is fine now. Thank you.

Today, for us, is a transition day. The kind of day that we are hoping to avoid (in the future) by making a move to Asheville. Not that Asheville has anymore inherent stability than Chapel Hill, but because it reflects, at least a beginning readiness to stop moving on our part. It’s a new and beautiful area for us to explore (great bookstore and lots of cozy wifi cafes). It is close enough to Zpora to satisfy our need to reclaim our lives and give her room to live hers sans parents. I have recently realized (after considerable self reflection, and with some sadness) that our presence does not keep her safe and sound.

We are moving Magnolia to a wild place on Hominy Creek about a mile from downtown West Asheville. It is only half a day's drive from Chapel Hill. What are our plans? Stay tuned!

ruby

No news is, well, no news

Dear Friends,

I am out of the hospital with a few more answers, many more punctures, and much more determination to stay away from the hospital.

When I went in on Friday night, I thought what I had was a straightforward case of CMV, not that I really knew what CMV was. From what I understand, most of us have had this virus floating around in our bodies at some point in our lives but our immune systems can fight it off so we don't even know we have it. For those of us who are "im-MEW-no-sah-PRESS-ed" (as the kindly doctor so informatively explained to me), it becomes a problem. Apparently my viral load was through the roof at 75,000 (not sure of the units here) and that caused enough concern that they wanted to start me on an anti-viral IV asap. I had a CT scan of the pelvis, abdomen, and chest on Saturday morning and met with the infectious disease docs later that day. The ID doctors, having never seen a presentation of CMV as lumps under the skin, decided that my symptoms were due to something else entirely and began on a line of questioning that included things about chicken coops and caves.

Of course, all the answers lie with the biopsy that had been done on Thursday. I thought we would get the results on Friday, but no. Then we tried for Saturday, still nothing. It seems that the pathology folks have taken a long weekend because even this evening there are no answers. As I mentioned before, they did show some abnormal cells, but after getting the information about the CMV, it seemed likely those were the abnormal cells. Still, there's lymphoma and other types of infection to rule out. What I know is that I woke up yesterday feeling, for the first time in a week, better than the day before. Today, I feel even better. The skin lumps are getting smaller and there are no new ones. After having a fever of 102 on Saturday night, I don't have a fever at all today. The only change in my treatment has been stopping the chemotherapy temporarily and taking ganciclovir, the anti-viral to treat the CMV. Clinically, it seems to me that the answer is that the Lo was indeed causing all the problems.

This hospital stay was pretty miserable. I'm not sure if I just chose a bad weekend, but I was not impressed with being an inpatient at UNC. Some high(low?)lights included:

* Being told over the phone on Saturday night by the intern on call who had never met me or reviewed my records that the chest CT had turned up a new lesion on the right lobe of my lung that the doctors were concerned about. This meant that Leighton and I became more than a little worried (despite gut feelings to the contrary) and spent a fair amount of time trying to talk each other down from immediately beginning to plan for another cancer journey. Turns out, I found out in the morning, the lesion is a small 4mm nodule that has always been there and has always been PET negative (ie not cancer).
* At 1am, being stuck 3 different times by Nurse Karen, who decided on the 4th time that it was good enough, turned on the ganciclovir drip, and left the room. A burning, aching sensation immediately started and got worse so I turned on the light and saw that my arm had ballooned up to look like I had a few golf balls under my skin. I got out of bed, turned off the pump and pressed the call button. Nurse Karen sashayed in a few minutes later, told me my arm would go down and said she was going to text page the doctor that I needed a central line because my veins were "no good".
* The medical student on my team telling me, when I asked for a printout of my labs, that he wasn't sure he could do that because of the HIPAA privacy laws. He didn't seem to think it was ludicrous that he would have more right to my records than I did, but eventually came back with my labs, asking me not to tell anyone he had done it, so that no one would get him for violating HIPAA. Apparently, HIPAA is to protect us from ourselves.

So that's all I've got for now. Thank you all for your encouraging messages that entertained me (well...America's Next Top Model helped too -- it's so bad it's good) and buoyed my spirits. I think I am well on the way to being back at it and, as one of you wise ones put it, kicking the Lo out the doh!

Much love,
Zpora

some call it prayer, some call it magic...

Here's a reminder of the "spell" that we have worked together often over the last year and a half to help Zpora's healing. This little bump in the road is a good time to remember our collective power to hold each other and to make whole. I understand this as our human birthright. It is as simple as caring enough for ourselves and each other.

This is a call to enliven, to breathe into, the circle of life that we share. Do something wonderful that feeds your soul... light a candle, take a walk, listen to music, sing or silence... From that full and nourished place, when you are ready, call Zpora to mind and see her laughing face and her beautiful rich red blood flowing strong and pure. Your own blood pulsing through your veins is the connection with her, with all that lives. With the beautiful waxing crescent in the western sky as witness, love your human self. My gratitude and love to you.

She is sipping gingerale "contrast" (I'm not sure what flavor!) in preparation for the CT this morning. She's nice and grouchy, so I think she's ready for a little real nourishment! Check back here for updates, and thank you for being present with us.
love,
Ruby

Say hello to Lo

Dear Friends,

As you all probably know, and I have certainly learned, when it comes to medical things, most often no news is good news. That has certainly been the case of my silence. I have, for the most part, been getting steadily stronger, training for an 8-mile trail race in February, doing and teaching lots of yoga, learning a LOT about psychiatric patients at Duke.

Until this week when I came down with a low level fever and lost all my energy. I got steadily worse over the week, my fever climbing a bit higher each day, and my energy ebbing away. I also sprouted mysterious red lumps below the surface of my skin. After some pushing, my oncologist finally agreed to see me yesterday, and he referred me to a dermatologist, hoping they would have some insight. They didn't, really, but biopsied one of the lumps, promising results by this afternoon. I didn't get any conclusive results from the dermatology resident, who said we would have to wait until Monday. Yuck. Massive bed rest and lots of fluids have not been working, so I called my oncologist again to request an antibiotic to potentially take the edge off.

To make a long story a bit shorter, my blood markers for the cytomegalovirus (CMV) are off the charts and I need to be hospitalized for a few days to get IV antibiotics. There are a number of things I don't understand, like why antibiotics for a virus, and why is IV soooooooo much better than a good ol' pill? I am guessing I will find these things out as the next few days unfold. I'm pretty bummed, because I hate being in the hospital, because I don't get to do any of the fun things I had planned for the weekend, and because my white counts are not low enough to merit a private room.

BUT, I am happy to know what this bug is that is making me sick, and to be able to start to feel better. The other piece of this is that the pathologist was worried about some abnormal cells in the biopsy. Pete, my oncologist (the leukemia/lymphoma specialist) says he is not as concerned as the pathologist about a cancer relapse. He thinks it is an unlikely presentation for a relapse, and it would be unusual to have two major things going on at the same time. I tend to agree with him, both because I want to, and because my gut tells me to, and I think this is all related to this one virus, hereafter referred to as "the Lo" that is messing with my systems.

I hope you are all looking forward to your weekends, and if you wouldn't mind greeting the Lo kindly and then picture it skedaddling back the way it came, that would be great.

I don't know yet if there will be internet access in the hospital, or how long I will be there, but I or others will keep you posted as things develop.

Love,
Zpora