Friday, April 27, 2007


A few days ago, in a less than 24 hour period, two people (or maybe three, I could be blocking) assumed or asked if I were Sofie's grandma. That did it. I headed yesterday for the hair place, to get "recolored". I know I am a 55 year old Mama, and I should be feeling lucky I have hair, but I was over the granny bit. I will still get that occasionally, but this was feeling constant and a blow to my ego.

I am feeling pretty good the past couple of days since the rescheduled treatment. I am taking the magic bullet drug Emend plus Marionol, (pot in a pill). Being a pragmatic gal, I also am taking good care of myself, mostly. I was concerned that my blood pressure had been running a bit high in the various clinics of late (although it is always nice and lowered after a chemo/blood transfusion treatment, no idea why that happens). I scheduled time for a short consultation visit with my Primary Care doctor, the wonderful Dr. Marum. I brought my little pharmacy with me, since I can no longer recite all the names and dosages of the various drugs. After discussion, we are going to try to increase one of the BP drugs a bit to see if that works to bring the pressure down a tiny bit.

The other thing we discussed is how the steroids give me the munchies and at all times of the night. She laughed and reminded me it could be the Marinol too, since that is like smoking pot. So that explains my recent cravings for Tostitos and salsa dip at midnight, two nights running.

I have to remember that I should not be eating as if I were eight months pregnant. These cravings have been funny. Mostly for salty stuff, but sometimes for cereal in the middle of the night or early AM.

More on the ongoing saga soon. I am mostly feeling well this week and that is great.

I will try being back to work for a few days next week, on my "Off" week! That seems to work.

I am off to get a massage from the wonderful Tracey Moon. I look forward to these like you would not believe!!

Wednesday, April 25, 2007

The Schedule is the Thing

On Monday, my lab work was done and I got a call late in the afternoon that my white count had dropped below the range that was considered OK for chemo so I was cancelled!!!

This wrecked my world, since I have carefully constructed a calendar based on it all happening when it is supposed to and people are scheduled and I have vacations booked on the "off" weeks, etc.

So needless to say, I was pissed and a bit sad. But this is always driven by the labs so it was useless it seemed, to protest. They are giving me big dollops of the drugs and if the WBC was too low, I was cancelled. Period.

Tuesday, I went in for the "other" clinic appointment, the coagulation clinic (this is follow up to the emboli in January, I go there monthly). They drew levels for the blood thinners at 9 am, and I left to return for my 1:30 appointment. When I did, they provided the lab results and I noticed that for some reason, they drew the blood counts again, even though they had been done by the other clinic a day before. But...... the WBC was in the "normal" range (albeit in the lowest possible end of that). I immediately went down to the Gyne Oncology clinic to speak with Teri, my nurse.

She must think I am a bit nuts, but they know I am a control queen, so they ran one additional test (a differential, I have no idea what that is) to confirm I was good to go. I cannot figure out how a lab result can transform overnight, unless my being pissy about it was one of those mind over matter situations. Anyway, I was "borderline" but they went ahead and sent me up for treatment! It did not start until after 4 PM, but this one is a quicky, so I was home by 6:15, and made dinner, chicken fettuccine alfredo, Sofie's current favorite thing after steak.

We then celebrated one of her snake's birthdays and I celebrated being back on schedule. I hope that I can stay there, for several reasons, the vacations (June and July) that area already scheduled and not changeable, and the fact that the deductible and co-insurance levels "renew" on July 1 and I would really, really not like having to get into more Duke debt the first week of July, which will happen if a chemo is deferred again. It could still happen, but I will work on that mind over matter thing and hope the next three treatment cycles (total of six infusions) will go right on their little schedules. I am trying to plan my life, after all, and these changes don't make that easy.

My doctor (Dr. Valea) came up to chat with me during the infusion, he is a good guy. I reminded him I was able to go to Disneyworld and not collapse, so I should be able to maintain this treatment schedule!

He is changing the order of which drugs (one or two) go in when, and thinks that might address the possible dropping of the WBC if it happens again. Hope so, because the other thing I am loathe to give up at all are manicures and pedicures (yes, you worried readers, I do them extra specially carefully, my own instruments, lots of extra cleaning of things, etc) but those are part of my good mental health routine and I don't want to give them up.

I am now officially at the half way done point of this treatment plan, if the numbers continue to go down (next lab for that is May 7th), I should be done in the end of June, and hopefully back to work within two weeks of that time. After the cruise.

More on the cruise later, but wanted to update all of you on this treatment. I am still a bit sleepy, although I took extra nap today. But that is the drug stuff, they give me, I suppose. I plan to DVR Lost this evening and watch it when I have more alertness. It is hard enough to follow the storyline sometimes when I am not tired!!

Sofie has homework to do this PM, so I have to go get her soon and get that started. Plus make a tasty dinner for three (Jamie is here babysitting me, just in case something happens).

More updates soon, and thanks for reading.

Saturday, April 21, 2007

Feeling Puffy

Those darn steroids are being steroidal. I am moon faced, puffy footed and feeling bloated. But there is no rash, which is good, and why I am taking the little buggers in the first place. But I am not enthralled with the moon face look. And I keep feeling ravenous, wanting weird foods in the middle of the night (while the steroids are keeping me awake for extra hours). Not a good idea.

I finally today put my contacts in for the first time since January! I have come to like my glasses, but going in a few minutes to a "grown up" cocktail party, so it seemed more festive this way.

Sofie has a sleepover (right now, she and her friend Taylin and her moms are at the Durham Bulls, where Scooby Doo himself was to make an appearance. Both girls love Scooby, so that was the draw). Baseball, well, that is the background. There are play structures, slides and hotdogs to deal with.

So tonight, I am a grown up. Too bad I am also kind of tired, did errands today with Sofie, and at her insistence, got the cats a new "kitty condo" play structure. In leopard. The other ones, plain beige carpeting on the structures, looked so boring. This is hardly boring. The cats seemed interested, if a bit reserved. But I think it will be a hit.

So I am just writing briefly to say things are mostly going fine this week, Jamie has been watching over me, but I have been quite functional. So I am off in "party clothes" to enjoy cocktails with Tracey and Sharon and their friends, in a pre-wedding (next month is their ceremony) bash. I hope I remember how to do this, it has been a while since I have been to a party where there was not ice cream, cake and birthday candles.

Thursday, April 19, 2007


Today, April 19th, is the fifth anniversary of Sofia's homecoming, her arrival from Ukraine to the US and her forever family. Since the very first year, I have made a big deal of this date, although she has not seemed to care all that much. So this year, she knows, and seems more interested and we are all three of us, celebrating with cake or cupcakes later this PM, after her haircut appointment, which is much later than I had hoped, but all they had with her stylist. And she has a great person who does her little cuts, so vain mom that I am, I agreed to the late appointment.

To commemorate this event, we are also donating the flowers to ERUUF on Sunday and will have a brief opportunity to share this news with others. The flowers are being done in blues and yellows, the colors of the Ukrainian flag, and will have her flags (both US and Ukraine) in the flowers. It might mean nothing to her, but it means a lot to me.

I cannot believe that it has truly been five years since that rosy cheeked little toddler came into my life and changed it in so many ways. I cannot imagine my life without her, despite the challenges that parenting presents sometimes. But I love her dearly and I think I have become a better person for having her in my life. And she is so tender and sweet about the cancer and treatments, always trying to help me in her little kid ways. There is a sweetness there inside her that is 100 per cent her, nothing I could have instilled. It comes from within her little soul and I think that is another reason we were meant to be together.

Our little family may be a tad unusual (separated or divorced moms, both dealing with cancer, but parenting her with love together and separately too). She knows she is loved. And that is the most important thing. Now, if I could just teach her about charity. She doesn't like to give up her money for any reason other than buying things she wants. And that doesn't sit well with this mom, who is all about giving back. It will be a slow lesson, but I am confident she will get there.

Magic Bullets

Good news on the treatment front:

Tuesday was treatment day A for cycle three and it went very well. Late, as usual, my clinic appointment was at 9:30 but even though I got to the treatment center by 11 am, my scheduled appointment was 12:45. I waited, but asked them to push me up, as I had to pick up Sofie at 3:10. As usual, this did virtually nothing. At half an hour past the scheduled appointment, they finally buzzed me.

But I digress. The very good news is that the CA-125 blood test ("cancer marker") went down after the second treatment cycle. Down a lot, so they (the team) is very encouraged, as am I. It needs to keep going down, but I am very happy that this combination of drugs, given to me in extremely high (read toxic) amounts, seems to be working.

My red blood count was low again, (although I felt fine in Disneyworld, mind over matter, perhaps???) so they decided to transfuse me again, which always pops the numbers up. But the transfusions are about one hour per bag, and I get two, so I let them know that I could do the chemo, but would need to take a break and get my daughter. It was, after all, Free Cone day at Ben and Jerry's and I had promised to take her for a chocolate cone. So after the toxic (but helpful) chemicals were all dripped in, I got disconnected and went to get Sofie. We lined up at Ben and Jerry's which took only 20 minutes, and got cones. Then I loaded her back into the car and headed back to Duke. She was "starving" after the cone, so before the treatment center, I took her to the food court for a snack. She has decided that Hardy's (like Carl's Jr) Twin Burgers are the "bestest burger ever" and so I got her one of those, it is essentially a double cheeseburger with thousand island dressing. She gobbled the whole thing up. Amazing capacity sometimes.

Then against all the rules for kids under 12 not being in the treatment area, I boldly brought her in and she sat on my lap and watched cartoons for two hours. She did really well. And when we were done, we just left quietly.

So, this magic bullet of the title: I got a new drug for the prevention of nausea, something called Emend. Three pills, the first is taken an hour before treatment, then one a day for the next two days. Today is pill day three and I have to say, yesterday I felt as good as I have before any of the cancer appeared! My energy was great, I was not at all nauseous and I went to work at UNC for a projected four hours, but stayed nearly a full day! Today I am working at home, but also feel great. The only problem is that the steroids I am on increase my appetite, so I have to watch that I don't overeat. But this drug seems to be doing the trick. Of course, it is another one that is very expensive, so I am happy for the insurance, so the co-pay is only $50, instead of the several hundred dollars for three pills. How do those drug companies get away with this nonsense?

I am more or less soloing for the next treatment session, Jamie has been staying here "in case" but for now I am feeling OK. But nice to have company.

Next week is treatment B of cycle three, the combo of two drugs. That is the one that did me in last cycle, so I hope these magic bullet pills work well again. I am also still taking the Marinol, for extra measure. I truly do feel sometimes like a walking pharmacy. I usually took nothing more than the BP meds I had to take and Advil occasionally. Now, I start the day with a handful of pills, followed by a shot at 10 AM (and again at 10 PM) and more pills in between, especially post treatment when I take steroids for five days to prevent the bad rash from coming ever again.

But this is about the good news. And it really is good, to know that the numbers are finally going down again. I hope this also means that after the six projected cycles, ending in late June, I will be off chemo for a while. And can get back into some sort of routine about working. I am considering lowering my schedule to 75% time when I re-enter, so that I can get rest and still keep my benefits. But not completely decided yet. Would start in July most likely.

Sunday, April 15, 2007

The Disney Blogs

So it was Spring Break and what do the cool folks do? They go to Florida! Not girls gone wild in Ft. Lauderdale or South Beach, but little girls gone Disneyworld!

When I last wrote about my health, I was dehydrated and had spent the better part of a week sicker than a dog. One morning in the treatment center with fluids dripping into my veins and I was a new woman. Restored. Reinvigorated. Re-hydrated. I was ready.

That night (Monday) I packed a bag for us (both of us packed into an average size bag, a first for me, chronic over-packer than I am). Sofie packed her toy bag and we were good to go. Our friends Nancy Frank and her wonderful daughter Rosalie had been with us the past week, helping me when I was so sick I could not get out of bed. Now we were all going to have the times of our lives!

Tuesday, April 10th

Up early and off to the airport to catch our Southwest flight to Orlando! Jamie arrived right on schedule and we loaded up the car (tight with five of us) and headed out. After a solid night's sleep, I felt ready to go. I was taking my newest anti-nausea drug, Marinol, with me. Marinol is essentially pot in a pill and the way they say to do it is to keep taking it to keep the levels up. So I take one little pill every six hours. And so far, it is working just great.

We arrive in Orlando and take a taxi to the (cheap) Travelodge. First sign as we pull in, the front entrance is closed (due to construction) and we enter from the back! Was this a sign of things to come? We did not expect a lot for $69.99 per night, (plus tax). We registered, and were told that indeed we had adjoining rooms as we requested, non-smoking and "pool view". Which was good, because it appeared the alternative was "construction view".

The shuttle schedule was presented to us and that was our first clue that things were not going to be what they had sounded like on the phone or on the net. We were SOL on the shuttle going anywhere near Disney, it left at 9 AM and again at around 11 AM.

The room had that funky smell, a mixture of old smoke (there were ashtrays, albeit clean ones, in both of the rooms), but opening the balcony sliding doors helped air it out. The old smoke smell mingled with dirty carpet smell, chemical carpet cleaner smell and the general smell of musty wet swimwear. Lovely. But hey, we weren't going to spend much time in these rooms anyway.

After putting our stuff away, we started to get annoyed that the hotel had misrepresented the shuttle schedule. It had been a question I asked each place, and they had misled me. They would not send or fax the schedule in advance, even though I had asked for a copy. They did give us one at check in, but they had said they had a shuttle with "many options". Since when is many defined as two in the AM and two in the PM? And the ones in the PM were before the fireworks, something I had specifically asked about. I had been reassured that we would be able to get the shuttle up to an hour post the Epcot show at 9. They lied.

It was nearly 1:30 so Nancy decided to ask the hotel to "make good" on what we were told and pay for our transportation that day. Somehow, with her excellent negotiating (I was too pissed to be nice at that point) they agreed and we departed in the van shortly thereafter.

Did I mention it was raining, pretty much all day? Drizzle, then rain, then moisture of undetermined nature, then more rain.

We went directly to Epcot, where I rented a scooter to conserve energy. We started in the more "science" part, going to the all-Nemo, all the time undersea adventure. Then we saw Ellen DeGeneres (she is everywhere) doing a presentation on energy that had dinosaurs in it (the reason for the interest for the kids). We wandered around a view more things, then had some food. Kids have to eat, you know. And they wanted sugar, so they had to have lunch first.

Ah, the Disney food. It is not bad, actually the burgers they have were more than OK, and the kids meals are served with choices of carrots, grapes and/or applesauce and are only $3.99 with a small beverage. Nancy and I had discussed previously that we were going to attempt to make "healthy" food choices the whole time at Disneyworld. We watched ourselves break that intention the first time the kids chose the restaurant. Burgers. Fries. Pretty much the way the next four days would go! Round that out with pizza, chicken fingers and mac and cheese and you have a kids dream meal plan.

We went to the "international" side of Epcot, where the most compelling country is Norway because they have hands down, the best ride. Every kid I have known loves it. We had to go twice. We visited a bunch of other pavilions (like those at the World's Fair I remember going to as a young person). Mexico was the one that (always) gets to me, it presents it as spotlessly clean, with happy, happy little people singing their hearts out. No illegal immigration, no fences or police presence. No poverty. No lack of resources. It is a Disney Mexico, after all. The mercado (market) they had set up was kind of cool, for browsing around. Even the restaurant, the sit down one, where they make it look like the night sky, looked appealing. But it was almost time for fireworks and their light show.

Besides getting into rides or attractions without the longer lines, the scooter was a blessing. It carried the water bottles, the jackets, the backpack. I got pretty good at maneuvering it around the tight curves of the entrance ramps. Sofie wanted to ride with me (she was pretty upset that for the first time at Disney, she was *not* getting a stroller). The Disney folks are very strict about no riders, no kids on the scooters. I am sure it is all a liability for them. Sofie tried my lap one time and there was a Disney cast member chiding me within sixty seconds!!!

But people in wheelchairs and scooters and their friends get to go in the disabled section to view the fireworks!!! This almost made the cost of the scooter seem like a good investment. The rain had abated and we got to see the Illuminations show in all it's glory.

We then departed with two very tired girls, back in our paid in advance van, back to the hotel.

Nancy, who speaks pretty good Spanish, cut a deal with the driver for future transportation. We were good to go. We would spend some extra cash on vans, but we would have our flexibility.

Sofie protested she was not sleepy, but she was out the moment her head touched the pillow.

Sweet, happy little snores.

Wednesday, April 11th

Nancy and Rosie are later sleepers than we are. We decided to let the girls go swimming before we left the hotel. They were very happy campers on that front.

We headed to MGM Studios, as that was the location of something rather important: The High School Musical "Pep Rally". For those of you who don't have a clue about why this is significant, High School Musical is a movie for the tween set that is a must see, with cute boys, perky girls and a Judy Garland/Mickey Rooney kind of "let's put on a show" feel. I actually rented it in anticipation of the Disney visit. Sofie seemed to like it and she is far from a tweener!

The movie set special effects presentation as well as others were fun for all. We tried to get into Epcot that evening, but found out that the type of ticket we had been convinced to buy would not get us into two parks in the same day, despite what the seller of the pass had told us. We just went back to the hotel, and agreed that the day had been kind of fun, even with that disappointment.

Thursday, April 12th

Today we planned to leave kind of early and hit Magic Kingdom. We went a bit ride crazy, I went on the easy and non-centrifugal force rides, (which did not include roller coasters OR those darn teacups). Rosie was great and took Sofie on the roller coaster and the teacup ride. I got dizzy from those teacups even when I was not on chemo!!!

Magic Kingdom is all about the rides. And the Princess obsession that most girls seem to have. But Rosalie is too old and Sofie could care less! They did pose with Pooh and Tigger, but it was hardly a big deal for either of them.

So it was all about the rides. Being in the scooter got us access faster to some of them, so I got to go on Aladdin, Dumbo, Splash Mountain, and yes, even It's A Small World. I usually dread that one, because the song gets stuck in your head and you cannot get it out for four days. I hummed "Ave Maria" under my breath the whole time and lo and behold, it worked! Nothing stayed in my head from Small World.

We climbed up the Swiss Family Treehouse. It was fun, especially the part where we noticed that some of the trees were real, but seemed to have creative "extensions" on them to give them more of an island look. Kind of like hair extensions for trees. Use your imagination, I cannot really describe it any better! The treehouse was pretty darn fancy, it certainly would give our motel a run for the money.

We did a lot of rides, the girls were on at least 11 of them. Then we boarded the monorail and headed to Epcot (this time we had passes to "park hop"). Big highlight of this was that both girls got to ride in the very front of the car for the monorail with the conductor. A very big deal,only a few kids fit at a time. We got there and did a bit of walking about in the nations area, and saw the light show again. Then our very tired girls headed back for a good solid night's sleep.

Friday, the 13th

Not an unlucky day! But it was our last day to play. We headed to Animal Kingdom, one of my favorites, since I love all things African. And they do a pretty good job. We went to see Festival of the Lion King and got seats in the first row of the Lion section. This is significant, as the acrobats and characters come and shake your hands, and that thrilled Sofie. I will try to post the really good photo of all of us that we got someone to take. The show was entertaining, not the stage show of Broadway fame, but fun. Sofie talked me into buying her two stuffed little lions, baby Simba and baby Nala. I am such a pushover.

We then headed out for some of the cooler rides, as we only had half a day in this park. We went on the Safari ride and then headed to the newest ride, "Expedition Everest- Legend of the Forbidden Mountain". This is another roller coaster, so I passed. Rosalie and Sofie waited 40 minutes in line to do this ride. I headed out to find food for our drive to Tampa.

The ride, according to Sofie, was "really scary" because it went backwards. She said she almost cried, but was glad she did it. Sadly, it was our last ride there, because we had to drive the rental car to Tampa to fly back to our respective homes.

While getting the food, one of those incredible things happened. I had been trying for two days to hook up with my friend Kathy who is a producer at Disney. She was actually showing family around and although on Wednesday we both had spent hours in Magic Kingdom, we never were on the same side of the park at the same time! But while standing in the line for food, there she was, one line over. It was a short visit, but fun that it happened at all.

We drove from the park to Tampa, where we said a sad goodbye to Nancy and Rosie. It was really fun spending time with them, and Sofie looked up to Rosie a lot, like a big sister thing. Nancy about saved my life by taking over Sofie care when I was sick (before we left for the Disney trip) and I am very grateful to her. It really was a wonderful visit.

Disneyworld is a fun short trip for us and I imagine we will be back a number of times. We aren't one of those crazy Disney families, but it is a great and entertaining way to spend part of Spring break!

We were picked up at RDU by Jamie, who took Sofie to her condo for the weekend. I realized, alone in my house, it was the first time in literally months that I had the place to myself for a few days in a row. It was heaven. I read a book for over an hour in the morning over coffee. I cleaned a closet or two. I did a bit of nothing. Ahhhhh.

Rewind Two Weeks Back (Sharing Memories)

OK, so finally I am getting around to writing about the reunion with Robin Tyler at UNC on the first of April.

Robin was performing as part of the Unity conference, which was organized by a student group with an agenda of sexual identity issues (L/G/B/T/QQ). Their T-shirts were black with Sex Police or some such messaging on the front.

Robin had called and emailed me to invite me to reconnect with her and although it had been years (more than ten, I am guessing) since we have communicated, I was really interested in seeing her again.

I got to the auditorium space on campus about 45 minutes before she was to be on. Her partner Diane was there (I think I may have met Diane in the past, but really did not know her). Robin and I chatted a bit before she went on. Her "performance" although it was partially comedy, was also a great historical look back at her life, her motivations and her political work. The audience (a show of hands was taken) was mostly post 1978. I felt, well, ancient, in that way I do when I am around college undergraduates. They all seemed so earnest and intense. The young woman, Catherine, that was Robin's point person looked about 15 to me, a little butch dyke with very short, very boyish hair, cute as a bug. But young!!!!!

Robin kind of introduced me to the audience as someone who had been with her at the festivals and during the fire year in Yosemite. That was in 1987 or 1988, during the years I refer to as "87-89". The crazy years. I remember the departure from the festival land that year, with the caravans and the fires burning on the sides of the road. Scary but an adventure. And lots of partying with the festival "refugees" in San Francisco that year, it was a fun time. I was living in Bernal Heights then, with a roomate and her son. She was, as I remember, not happy with the festival worker invasion outside the house, in RV's and camper vans.

Robin and I had a stormy history those last years, in 1989 I think. So what is that, nearly 18 years ago? Where on earth does time go? I was still working on the crew in 1994, the year I met Jamie.

I remember I went to one West Coast festival "after the fallout" not as a worker, but with Jamie as a festie, I guess. We hung with friends for a day or two. It wasn't the same of course. That was in 1995, the fifteenth anniversary of the West Coast Festival. Jamie and I slept in her truck (that was a long time ago!!!). And Robin and I were not talking then, I don't think.

The reasons for the fallout seem silly now. Not worth writing about. The important thing is that we have a shared history. At least 12-15 years worth. I went to her LA home for Thanksgiving many times and worked at festivals from 1980 until at least 1994. I know a lot of her past girlfriends. I watched her have at least one breakdown. I watched her grow the festivals from the first West Coast (I cannot recall ever working harder than I did that year) through the ones in Georgia, which were my favorites, because the southern women were so grateful we were there and had little attitude like the West Coast gals. I have lots of memories of the festivals and there are times even today, when I find myself doing something (usually having to do with triage) and realize I learned and honed that skill at festivals. Go figure.

It is always important to me to remember that people have the capacity to change and grow. And from that underlying philosophy, I feel strongly that bridges should not be destroyed, but allowed to remain, so that, even many years later, the possibility of reconcilliation is there, the openess to reconnecting, and remembering not the things that pulled you apart, but the shared memories that you have in common.

I am glad to have reconnected with Robin and I really enjoyed the time with Diane. I hope to see them again, sooner, rather than after another decade!

Anyway, Robin's comedy was all the old stuff I had heard, but clearly the young audience had not. And put into the context of the story of her coming out and becoming an activist, I was fascinated. I "knew" all this stuff, but it was great to see it put together this way. I am not sure if the audience was expecting more comedy or more politics, but it was a great history lesson to be sure. I sometimes am appalled that the "younger generation" doesn't have a sense of who blazed the trails. Stonewall, yes, but others? They seemed to be drawing blanks.

After the performance, we walked back to the Carolina Inn where they were staying and the catching up began. Over a snack or late lunch of pulled pork sandwiches (truly a southern delicacy).

Robin seemed so centered, calm and more content with herself and her life. Not so competitive or whatever that energy she used to have was. We talked about a lot of things, both festival and not. I noted that during her show, she had photos of many of the girlfriends I recalled, but had "edited out" one, Linda, I think her name was. I guess we all get to do that to at least one of the girlfriends in our history. I know I certainly have!!

Robin seems to be in touch with a lot of folks and their stories weren't all good ones, but such is life. My situation is just one of many challenges we are all facing. Aging for one, Robin turned 65 on the 8th of April. Ten years older than me, not all that much. But when we first met, it was 1980, so Robin was about 38 and I was 28. Was I ever really 28? That seems so young! But still older than the students in the audience!! I hope that the past years have also mellowed me and given me perspective.

Robin and I worked together on her festivals for so many years. I remember wandering into her office on Valencia Street (above what was then the Artemis Cafe) and volunteering to work on the festival. I came in and did all sorts of paperwork (pre-computer days) and registered folks and who knows what. And then I went to the festival and I think I was the T-shirt seller person. Over the years, I became a part of this group of festival crew workers, who saw each other annually and worked our asses off for not much money (if any) and still came back, year after year. When Robin brought the festival to Georgia (White County, who can forget that?) in 1985, I remember arranging my vacations to make sure I could be there as well as the West Coast festival. I don't recall having a "real" vacation for a whole bunch of years but I was young then. I didn't really have money for a real vacation anyway.

Robin grew up on the festivals and so did I. I had my first (but not my last) affair at one of them. Festivals were a great place for sexual acting out. It all seems so long ago and far away........

So next, I will post the "Disney Blogs" to catch you all up on how we spent our Spring Break.

Monday, April 09, 2007

Fluidly Speaking

This won't yet summarize the visit with Robin (I guess I will get there, when I get there). But it will wrap up a bit on the saga of the misery of last week.

So Nancy (Frank) and her daughter Rosalie arrived Saturday PM. Pretty much all day Sunday I was absolutely miserable, in bed, running only to and from the bathroom. Could not stop the problems, no matter what. The nausea got a bit better, thanks to Marinol. Yep, I am legally swallowing pot every six hours, friends. I have never been a big pot person, actually I fake smoked it in college, but it seems to work the best right now, so Marinol it is.

Anyway, mid-day Sunday, I broke down, paged the resident on call for my area (fortunately someone I know well who knows me) and begged for relief. It came in a large jar, a powdery substance that I had to choke down, mixed with water, in small sips (took about a half hour to an hour, with my little sipping method). It helped. Nancy clocked me, first 30 minutes, then 45, then a full hour, no bathroom run. All the way until 12:45 AM, then one and I was OK. That was something like nearly five hours, a record for the past 24.

All this not eating has had an effect. Nancy wouldn't let me pack the jeans I wore to the airport. I had not really noticed, but the jeans (already "Mom Jeans" at their worst) were totally bagging in the legs and most especially, the butt. I found a pair that is a bit better. This is the fun part (really, the only fun part) of being nauseous and all that.

Anyway, I digress.

I finally let myself sleep Sunday PM around 2 AM. Woke at 7 today, feeling dehydrated, but better. I had labs at nine AM, so off to Duke I went, and then stopped in to see my nurse, Teri, who is really the primary connection to the Gyne-Onc Clinic on a regular basis. She had been off work on vacation all last week, or I would have called her earlier. Upon seeing me (I had to be wheeled from the labs to the clinic in a wheelchair, I was that light-headed, never mind that I drove to the hospital myself). Anyway, Teri's comment was "You look as weak as a kitten" and I could not argue that!

I was dispatched to the treatment center for re-hydration, both Potassium and Sodium Chloride. Halfway through I started to feel better. I got back home around 1:30, feeling like a different person. Nancy made me eat a few crackers and I had a little croissant Rosie had baked. Then off for a short nap (I also had the anti-nausea drug and something else that had made me a bit sleepy) and when I woke up, I felt terrific. We got in the car (Nancy drove) and visited Chapel Hill, UNC campus, just a little drive about. Then got the girls some Starbucks (frappacinos and kids hot chocolate with a lot of whipped cream). Then home where (drum roll, please), I had a light pasta (plain) dinner with a tiny bit of ground chicken. No sauce, no need to scare my insides with anything acidic, but it was great. I won't say I ate tons, but it was better than anything I had done for days. I am close to the three hour post eating mark, a good sign. So I am going upstairs, packing up the suitcase (trying to travel pretty light) and going to bed, we have a big day tomorrow.

Nancy, as my Mom was the week before, has been a saving grace through all this. I cannot bathe the kid, or do much, when I am that sick. I would rather not be that sick, but I guess this treatment option is making it so, not in a good way. So I am having to rely on friends and family to be the safety net, the help that I need to kind of hold it together. I am one lucky woman that it worked so well, the last couple of weeks.

The kids are excited. I am excited. I hope this works out well, I really do. We will make it so, but if you are sending energy, or prayers, send a lot to EST Tuesday from 9:30 AM (when we leave) through late Friday. And we should be fine!!!

Fluids. They sure are all they are cracked up to be, you know. And when you cannot keep them in, you really feel it. I am so grateful for the ending of this chapter, even if just for a week or so. Hopefully, next time, we will intervene earlier, and if it happens again, figure out another plan.

PS: If you haven't checked Jamie's blog lately, do so, there is a cute photo of Sofie and a friend on a firetruck.

Saturday, April 07, 2007

Time, Fleeting

Mom left today, and as I look at the blog, I realize I have not written a word since the day she was to have arrived! The visit went smoothly, I guess. I was feeling just great when she arrived and we had several days of nice visiting and she cooked and took care of me or more so, of Sofie when I needed to rest.

I want to make sure to circle back to my visit last Sunday (April 1st) with Robin Tyler. But before I do, I want to talk about what this past week has been like. The following is not for the squeamish. It is, ah, er, ah-hem, about body fluids.

So on Tuesday, the labs go without a hitch, my blood levels are rising nicely, thanks in part to the transfusions of the previous week's treatment. Treatment B of Cycle 2 was done nice and fine, just like usual. Had lunch, like I usually do, near the end. All fine. Normally, the day of treatment, I feel great, since I am kinda doped up plus pumped up on the pre-treatment infusion of "pre-meds". Even though I am not supposed to, I drove home (it is very close by).

After Mom and I drove home, about 1:30 or 2 PM, I decided it was an optimal time, since Sofie was still in school/afterschool, to get manicures and for me, a pedicure. It is usually so nice and quiet at the nail place on a Tuesday afternoon. Mom was game, so off we went.

Well, long story short, I barfed. Big time. All over me, all over my clothing, into the pedicure water (too gross to describe). Kim, my wonderful manicurist I see on a regular basis, was so calming. I was totally mortified, she cleaned up as if this happens all the time. Only three others (clients) besides my Mom saw this atrocity, but it was too gross.

And exhausting. But I persevered, and of course, got the manicure and pedicure done. Priorities. Went home to collapse and rest. Thinking this was just an unusual situation and not knowing why I even got sick.

But sick I was to be. All week. Experimenting with two different anti-nausea drugs, trying to see which gave better relief. This week, neither did the trick. Finally on Friday PM, after a week of more vomiting (only one other quasi "public" situation in my car) and a lot of Spray and Wash applied to my clothing, on Friday, Jamie passed along her Marinol to me. That did the trick. I had not been able to eat solid food pretty much all week, since Tuesday afternoon. I would gamely try something, like a saltine or a half cup of white rice only to experience it again, an hour later. So I stopped eating solids. No point in that.

The other atrocity is that the food and liquid that does get down has been wrecking havoc in my gut and causing constant GI distress as well. So (this is why the earlier warning), it should not be a surprise I dropped about four to six pounds since Tuesday. Nothing has remained in my system long. It is most unpleasant to say the least and I have to get rid of it. They even had to lower my blood thinner medication amount, since I have lost a few pounds.

This week, however, was a vacation for my nurse Teri, so I finally have left her a message and possibly will stop by Monday, when I go for more labs. I also need to get the Procrit shot weekly. Need to keep the red blood count up for the Spring Break week to come!!!

In part two, I will update you on last week's visit with Robin. I am going to use a small burst of energy I am having to make sure everything is ready for Nancy Frank and daughter Rosalie, who are arriving in the early evening for the week. More about that later, too.