Vanity

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!!

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.

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.

Homecoming

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.

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 wild......at 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.

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.

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.

A Kind of Blah Day

So after a few weeks of weather in the 70's to 80's, the weather got all cold and rainy today. I suspect it is because last weekend I carefully pulled all her shorts and short sleeved shirts from the storage and brought them upstairs. Although it is only March, it really was short/skort weather for a while there.

I had planned to try to go into work again today, but the queasy feeling upon awakening combined with the drizzle discouraged me, real fast. Which turned out to be a good choice, I also was having some of that chemo related GI distress I am so not fond of. TMI, probably, so I will stop here.

I got some writing done from home and also attempted to pick up the house a bit more in anticipation of Mom's arrival this evening. The guest room is fine, but the quantities of cat hair everywhere are a bit daunting and she is a dog person, not a cat person, so I try to "de-cat" the place as much as I am able. The cats are not cooperating, it is the shedding season. I brushed Gracie for half an hour the other day and could have made a whole other cat with the hair.

Sofie is being very cute about trying to gather up toys she doesn't play with anymore so we can get rid of them. She wanted to have a yard sale, but we don't have the quantity nor the location to be successful. We will probably bring some things to her old preschool, they are having a fundraising yard sale next month, I think. So that might be best. It is another sign she is growing up and "getting it" about needing to get rid of some toys before we add more. And there is really no place to add anything, as any of the recent visitors can attest.

Actually, this summer, I am going to upgrade her room a bit, making it less little girl and more big girl. She wants her room red, which is a bit over the top, but I think I will paint the walls that are pale yellow (from her old nursery colors) and make the rest blue. And put up some shelves to hold her growing collections of snow globes and now she wants to collect bobble heads. Why? I have no idea, but her friend Abby has some and I think that is the primary motivation. She is doing more "girl bonding" these days. She still is a little girl to me, but she is more and more wanting to feel more independent and grown up. And she tells me, in no uncertain terms, when I am crossing a line: "Mom, I can do that myself" I hear it all the time now. I am having early empty nest anticipations and I don't like it!!! I still think of her as my baby.

So, we have about three hours to go until we pick up Mom, and have to finish her writing homework. So this is a good time to stop. Tomorrow is another day as Scarlett would say,
and will provide time for Mom and I to visit.

I have the heat on, when I was using the air conditioner just two days ago. So weird.

Golden Light

This is just a brief posting. Today, day right after chemo day, was a great one. Pumped still on the steroids from yesterday and taking the anti-nausea meds, I felt great. Could not sleep last night until nearly 2 AM, but woke at 7 all bright eyed and ready to go.

Had a great Polarity session again today with Janice. I don't claim to understand it all, but this sort of energy work is terrific. Several weeks ago, I was teary and knew in my "gut" that the treatment (Doxil) was not working. And I was right. Today, I went in feeling just wonderful and the session was so energizing. At the end, I was visualizing a golden light coming from my heart, which to me represents the love I have both received and been blessed to give. I often see various "auras" or lights during her sessions, but this was unique and very soothing and wonderful.

Went to dinner with Tracey and Sharon at a local ninth street place with Sofie, who fussed and tantrumed and was obnoxious. Still very demanding and wanted to eat chips and queso even after her meal was served. I held my ground but she made the meal not much fun. So when we got home, I was surprised when she spontaneously apologized for her bad behaviour at the restaurant. Maybe this is a good sign that she might be getting more self aware.

Overall, I expect tomorrow to be a queasy day and I might or might not go into work, depending on the early morning experience. Mom comes tomorrow PM, and I should also spend an hour or so picking up the place to make it less messy. It can get out of hand quickly. The cleaning folks come next week, so it is up to me.

But back to the golden light. I really do feel this sense of love pouring out of me, more than ever before in my life. It is such a great feeling I don't want to lose it. It is directed to all of you who are part of the net, the net that makes me know I can feel safe in this journey, no matter what. Whether you are near or far, writing a lot or not much at all, know that your presence is welcomed by me, and embraced. With golden light from my heart.

Defying the Numbers

Just in case anyone was wondering, the rest of Sofie's weekend (Sunday) was not boring and was quite a lot of fun. Sunday was all about her, with RE (*religious education) class at ERUUF, followed by a "secret pal" brunch, where her very sweet pal, Diane, revealed herself. Sofie kind of was interested in that for about ten minutes, but maybe next year will be more into it.

That was followed by mommies and daughter manicure/pedicures, then shopping for shoes at REI. She got not one, but two pair of Crocs (the must have shoe for the primary school set) in red and in orange. She wears them mis-matched intentionally. Then off to lunch at Moe's (an experience unto itself, they holler "welcome to Moe's" as each person enters....), then to a big Triangle Families afternoon at Duke Park. Then after that, Sofie and I were invited to Ruby Tuesdays with Jacob, Emma and their mom and grandparents. Whew. I was exhausted, she needed a big bath and all in all, it was a great day. And I had less trouble sleeping that night.

The queasiness in the AM continues, but I have kind of negotiated with my higher power that I am willing to be nauseous and yes, even barf, if I can keep my hair this round. And I have kept the hair so far and I am adjusting, better than I thought I would, to the morning sickness. It sounds to friends who have been pregnant, very similar to what they experienced the first three months. AM barfing, manageable with the drugs, and then pretty much OK for the day. Who knew? Sofie thinks it is disgusting, but tough. I want my hair this time. It is all curly and soft and I like it.

Today, I went in for Session A of round 2 of the new chemo. The labs had been done prior to the clinic visit. My CA-125 was "level" to the previous one, a potentially good sign. It means only 7 points higher, which is really negligible. The white count was lower, but not in any kind of danger zone. Which is good, because if it were really low, I might have to stop getting pedicures. The red counts were what had my nurse, Teri, worried. The Hematacrit was 25 and the Hemoglobin in the 7.6 range. Not so good.

But I feel OK. I am tired, but not fatigued, there is some sort of difference, at least to me. And my mood is great. Maybe it is the pills I am taking for mood, but I think it is just Spring, sunshine, life and happiness. Last year, when my numbers were not even this low, I could barely make it past 8:45 PM and had to sleep. These days, with the warmer weather and lovely spring days and early evenings, I find myself going and going longer. I still "hit the wall" pretty much every afternoon at 4, but if I rest for an hour or hour and half, I can make it until pretty much 11 PM. If you count watching the L-Word as an activity, that is. Which I do, because watching Jenny Shecter's character takes a lot of energy, since I want to jump up and slap that girl upside the head! L-Word for me is as close as I come to watching a soap opera. It is so surreal and so unlike any aspect of my life (unless you count the season where Dana died, but even that was 110% drama-queen drama). And where do they get the money for those clothes???? The only lesbian I know in LA is nothing like them either.

So what I kept hearing today was "you look good, but you should be more....pale, tired, etc" The numbers don't always know the whole story, I guess.

Funny. I wonder if I am simply acclimating to lower blood counts and learning to live with the new normal? Is that it? Or what?

It reminded me of when I was a college freshman. I went for my first meeting with my advisor, and he looked at my SAT scores, OK, but nothing special. Then at my college grades. The comment? "You aren't supposed to be doing this well". Is that the appropriate thing to tell a first semester freshman? I think not. And was I supposed to work less or do less well? Huh? I showed him.

Anyway, I went to work on Monday, for five hours, including a stimulating meeting of the hiring committee I am now on. I did pretty OK. I then went to two evening appointments, ending with the pre-chemo acupuncture treatment. I really think that my acupuncture doctor, Fang, is gifted. We have worked together to figure out the best timing for treatment (the day before or early the day of) and I always leave there feeling better.

And, for all of you worriers out there, who really, *really* thought I should be seeing a therapist, voila! I am. Jamie's therapist referred her to me, and I was so happy to click with her right away. I like shopping, but not for therapists. She is a Jewish woman, mother, not a lesbian but completely and genuinely comfortable with lesbians in her office, and it immediately felt "right". We have only met twice so far, but I think she will be great to have an established relationship with as I move forward in this journey. And, best of all possible worlds, she is on "the list" for my insurance, meaning my co-pay is just $40. Therapy at 1977 prices in 2007. Whoooopppeeee.!

Speaking of things long ago, this Sunday, Robin Tyler, who produced many years of West Coast and Southern Music festivals, will be performing at the Unity Conference at UNC in Chapel Hill. She called me to see if we could have dinner. We have not really spoken or written for over ten years, possibly more, I cannot keep track. I am so pleased we will be able to get together, both of us older and presumably wiser, for dinner after her show. Again, defying the number of years of not speaking, some misunderstandings, all not very important in the big picture.

In a few days, Mom arrives for a week, then it will be Spring break and Nancy and Rosalie Frank are arriving for another week. So if I am tired, there will be a good reason. I am excited about both visits and we are planning something special for our girls. Rosie is 12.5 so six years older than Sofie. Sofie loves being with her, and they both love things like swimming and skating, so it should be fun.

Last comment about defying numbers (for this blog, at least). Our friend Kimberly was at the park on Friday (yet another kid-centric activity) and somehow we got to talking about age....someone had asked me if I was Sofie's grandma. I am more or less used to this happening now, and don't get defensive anymore like I did three years ago. With no hair coloring, it is likely to happen more and more. Kimberly is mid- thirties, if that, and so when she asked my age, and I told her, she was shocked. She thought I was in my forties. And these days, I am feeling much more "forty and fabulous" than fifty and fatigued. So there.

What a Boring Not Fun Day

Not my idea, the title is from something Ms. Sofie said late this evening. "I hardly had any fun today at all" she complained at dinner.

OK, you be the decider:

From 7:30 AM until about 11:30 she played with Avery (an almost five year honey of a boy who did a sleep over). First, they played in her room, then they watch Disney cartoons for short while, then Sofie made pancakes (she is getting really good at flipping them), then they got dressed and went out to the trampoline where they played and jumped for over 1.5 hours....then they were joined briefly by Avery's 7 year old sister Olivia, who came with Dad Matt to pick Avery up. Did I mention Avery was a sweetheart? It made me kind of miss the little brother I always intended for her to have that she is no way having now. Funny digression...the kids were up until nearly ten PM giggling and playing in Sofie's room, then finally slept. About 4 AM, Avery came into my room. He had gone to the bathroom and he said "but now I cannot go back to sleep in Sofie's room". So he slept with me. I went into Sofie's room after he fell back to sleep and I had to stifle a laugh...he literally could not sleep there in the bottom double bed because Ms. Sofia had tossed herself diagonally across the bed, leaving no room for the poor boy!

After the bouncing and pancakes, Sofie went to her ice skating lesson (a half hour) and then did free skate for nearly another half hour. After this, we joined friends in a local sports bar (nicer than that sounds) and had a late lunch and watched the Duke girls play Rutgers in what must be one of their worst games ever. It was so painful to watch that loss, especially at the end when Harding missed two shots. It had to be even more painful for her, but she did not lose that game, it was a team effort. Bales did her best, but she could not save that game. Very sad.

After the excitement of the game, and a huge brownie and ice cream dessert to keep Sofie quiet the last 30 minutes or so, we went home where I collapsed, Jamie went on a mercy mission for me to Costco (I have to bring bagels tomorrow to a brunch) and Sofie watched one of her favorite Scooby Doo movies. I told her to wake me when it was over, which turned out to be 6:40 PM!

I quickly made her a bath, where she played happily until it was hair washing time, then we had a late supper (Jamie cooked!) and she then played a bit more until she was urged to brush teeth and get into bed for stories. Three books later, Jamie finally emerged from the room.

So, as you can see, a very boring, not fun day. What on earth about tomorrow? We don't have plans for the circus or anything "really fun" other than a Triangle Families play date at Duke Park, so I guess it will be another day of tedium for the girl. Not for me, I am going as fast as I can! And I am getting ready for another round of chemo next week.

Overall, this past week, the nausea and vomiting abated, the neuropathy in my right foot is very minimal and I am not (knock wood) yet losing hair. I call that a good week, myself. And hardly boring.

A (Perfect) Ordinary Day

I try to keep my mind open about the positive things about having this cancer recurrence. One recent nice surprise is that most of the pants that did not fit me last spring now do, and I have been delighting in trying them on and realizing that they fit (some are even loose). Finally, the cancer weight-loss diet plan is working. Last year, it was all I could do to not gain weight during the treatments.

Another wonderful thing about being home is that I sometimes get to experience what life might be like if I were one of those moms who did not have to work full time. That includes being able to have lunch with Sofie at her school during the week for no special reason! The school encourages parents to join their children for lunch during the week, but I have rarely been able to do this, seeing as my work is in Chapel Hill and her lunch time is 11:15 in the morning (way too early for me, but they burn off a lot of energy just being kids).

So this past Tuesday, on what was a perfectly beautiful spring day (warm, but not hot, and sunny with all sorts of spring allergens blooming madly), I told Sofie I would meet her for lunch. I asked her what kind of lunch she would like. She did not hesitate: "Sushi, and hot tea!!". So there you have it, my daughter is making me so proud.

I stopped at Whole Foods before lunch and got the sushi (more of a mixed platter, with her getting the maguro and salmon rolls) and also got edamame. I brought a mug of hot tea as well.

I set it all up in the cafeteria so that when her class arrived (she appeared to be the line leader that day), she lit up with delight! We sat and had sort of a sushi picnic. Many of the kids seemed fascinated by her food, most had never tasted sushi ever. Or the edamame. There was plenty of that to share, so Sofie passed it around. The kids loved shelling it and tasting it. One kid was planning to plant hers (I did not want to burst her bubble and let her know that cooked edamame was unlikely to sprout). I felt like I had brought a small cultural expansion to the class that day. Sofie was so proud I was there, and ate well, something that she is doing a lot more of these days. Although her manners still need a lot of work, she is eating more food, another growth spurt must be in the offing.

After lunch, I went home, since I had not slept well the night before. I crashed for a few hours and that felt lovely. Then Jamie came to get Boone to take him to the vet for his check up. I kind of lazed about the rest of the afternoon, what a slug. But I tend to follow my body's lead these days and it was tired.

The days are more likely to be in the 60's and 70's, even up to 80 this week and the upcoming weeks. I headed to work yesterday and spent five hours there, in two short meetings, and then clearing out literally 1000 emails. I had 1871 in the in box when I arrived (I have read a bunch online from home, but you cannot clear them out or file them as well as I could at the office).

My mom arrives mid-week next week, just after treatment cycle two starts. She will be here for one of the treatments and for the Friday preceeding Spring break when Sofie is off from school. Not quite sure what we will do that day, hopefully something we can do outside, a picnic or something.

I am torn about going back to the office more. I was totally exhausted yesterday evening from only five hours of not all that much activity (but lots of chat and computer stuff). But I need to get my head wrapped around going back at least part time. I miss people, there is stuff to do and my boss Carol has been more than patient. Assuming I can get a good handle on the rashing and the nausea, I can manage those things and go back at least part time.

Which in the long run might be good for them, for me and in general.

But it is hard to tear myself away from my home in this part of the year, I am content many days to be slow, read, watch Ellen and/or Rosie (aka The View) or Oprah and just be glad to be alive.

Yesterday, to make a lovely ending to a nice day, I had a pot of beautful tulips waiting for me at my door. The card was simple "With love from your Academy of Friends Family". That is what a lot of this has been for me, accepting with joy and grace, the love from all sorts of parts of my extended family.

PS: I recommend that everyone click on the link to Jamie's blog and read about Sofie and her newly discovered love of basketball. Go Duke! Go Carolina! Go NC State!

It Was a Dark and Rainy Night

How did it get to be Friday already? Time flies when you have chemo two weeks in a row and lots of drugs to balance out to keep rashes at bay and also try to avoid nausea and get some sleep!

Jamie wasn't feeling all that great today either, but she had promised Sofie that tonight she could stay at the condo. Sofie has been asking a lot to do that, she is over staying here "all the time" and wants access to her video games and just the change from me. So Jamie, feeling a bit queasy today, got her from school and is taking her to her house for the evening. We will pick up again for ice skating lessons mid-day tomorrow, going to the Sportsplex for that.

I haven't set up any play dates for tomorrow, bummer....I should try. It helps her energy and also helps me, to have daytime resting periods as needed and time to actually "do" stuff, albeit not anything monumental.

This second treatment went pretty well, as far as I can tell. Nothing big, just occasional surprise nausea and vomiting moments (as in this AM, prior to breakfast). Not even real vomiting, just kind of a heaving and a bit of nasty stuff coming up. And then it is over.

I am still on steroids and they seem to be keeping the rash controlled....unfortunately, they also keep me up at night until 1 AM sometimes, despite meditation, trying to go into trance (self hypnosis) and all sorts of relaxing efforts. Even putting on Law and Order: SVU which usually lulls me right to sleep, did not work the past two nights. So I woke up today, still tired, and of course, the dark rainy day did not help.

I am missing my girlfriends, a lot. It was fun to have Brenda and Pam here and I miss just the chat and the hanging out with them. I am doing pretty well this week and hope to do even better next week, perhaps even venturing back to the office for a few hours mid-week. But the companionship was great. I am just feeling a bit blue today, overall, due to the change in the weather from the great sunny in the low 80's we had all week to this under 50 wetness. I was about to get the winter jackets "winterized" to put them in storage. I guess I can hold off a bit more, perhaps a week or two. But by April they seem too dark and woolly for this climate.

Durham in Spring is so delightful. I wish that weather would last for months, into the summer when it gets disgustingly hot and humid! The evenings are warm and not humid, and the days are just delicious.

On Wednesday this week, after my last class in the self-hypnosis techniques (offered free or by donation to cancer patients), I knew I still had the babysitter for one more hour, so I went to Whole Foods with one of the lovely gift cards my wonderful supporters made possible and I indulged in a full tray of sushi. It is not quite the same as going "out for sushi" to a restaurant, but they do a great job. I just sat there, slowly eating and enjoying the peace and quiet and not having to share it with Sofie! I am so thrilled she is eating and liking sushi (tuna and salmon rolls, mostly) but it is nice, now and again, to just enjoy it myself. I was a good mom and saved all the salmon sushi rolls. I packed them in her lunchbox the next day, along with a little packet of soy (the reason, I believe, that she likes it so much, she loves the soy sauce!). How very "Breakfast Club" of me, sending my 6.5 year old to school with a container of sushi. But she was thrilled.

Mostly I am writing just to say that I made it through cycle one of this new treatment pretty well. Next week is the "off week" and that is great, I only have to go in for labs. And I have a massage which I am sooooo looking forward to.

Then, lather, rinse, repeat, for an anticipated five more times, assuming this magic combination of drugs does the trick.

I am hoping very much that my hair stays put. It might thin or fall out again, I hope not. I want to just be "with hair" for now, I am so liking it.

So hang in there with me, all of you, and more will be reported soon. For now, my big plan for tonight is to run a hot bath for the first time this year and light a few candles and just soak until I prune up. That is a simple thing, but something I have missed. The idea of it is pure luxury.

The steroidal effect

It has been about a week since I started the *new* chemo plan. The other one, Doxil, as you might recall, had a lot of "don't do this" things attached to it, to prevent really nasty side effects. One of those was no hot showers. As soon as I was sure I was off that medication, I celebrated with what might be a personal best for hot steamy showering for me. I hope Mother Earth (and Al Gore) will forgive me that one transgression, but it had been nearly two months of tepid water.

So a week has passed, made absolutely delightful with the visits from Pam Herlich and Brenda Laribee. Pam arrived a few days before B and we kinda just hung out, nothing crazy, but I always enjoy her company. B arrived late Monday night (let's just say I won't be considering US Airways for my airline carrier anytime soon) and the week went by in a flash. They accompanied me to Duke on Tuesday for chemo. That was an experience in itself, as the chemo appointment was to be at 11:30 and I did not get in until 3 PM. Even for Duke, that was a long wait!

But it went well and the day after chemo, I was still pumped up on the steroids, so we put that energy to good use and did a girls day out. We went to the Mall, shopped and visited and then had a lovely late lunch with (drum roll, please) cocktails! How very decadent, at least for me.

I had an Absolute Limon but with raspberry stuff in it, it has now become my new favorite spring/summer drink. We re-named it the "Kentini" and I hope you will all get the opportunity to try it in the future. Maybe because I indulge so rarely, but it knocked my socks off.

The rest of the week was a blur of comings and goings, Pam left early on Thursday. Which was my worst post chemo day. They had mentioned that one possible side effect was a rash. Oh, yeah, and it was (is) a doozy. All the way up my legs and very itchy!!! I tried in vain to not scratch, to treat it with just Benadryl, but I broke down and late on Friday I called, begging for something else. The something else, unfortunately, is steroids. So starting Saturday, I have six days worth. And I guess since this drug happens again tomorrow, I might be getting more.

There is a good news/bad news thing about steroids. I feel like I have energy to burn (B and I spent Sunday afternoon cleaning out the fridge and freezer and doing a full inventory of what the heck was in there). But I cannot fall asleep at night until very late (like after 1 AM) and that is not good. Plus I feel "edgy" and my heart is pounding too much for my taste. But the itching is more or less taken care of. So I guess I will have to deal with this, one rash at a time.

But why on earth would anyone take this crap intentionally? Who wants to feel that pumped up all the time? (baseball players, I guess). I just don't get it. But I have never been a druggy type. I see a weird irony with all the meds I take now.

Having Brenda here (and Pam) turned out quite differently, since I did not have to be that cautious about heat and friction anymore. But it was great. I do crash at least once a day, usually by 4 PM, and need more rest than I could ever get soloing. Plus having company during this journey is great. Brenda is so organized my refrigerator now is completely cleared of any extraneous stuff, including the year old package *unopened, and not even moldy* of tortillas and the container of mustard I had saved since some party about 8 months back.

If she were here another week, imagine what we could do to clean up my disaster area of an office. But alas, I am on my own, so I had better kick some butt this week and next. Putting that steroidal effect to good use.

Tomorrow's chemo will have the "other" drug, Carboplatin, one of the two I had last year. I think it was the one that caused the neuropathy, so I have already set myself up for more acupuncture appointments and that should help. Hopefully it won't cause quite as much joint pain as last year, that was miserable too.

So the next few months will once again be a journey, albeit one with a steroid side effect (so maybe I *will* be able to finally clear out that office and toss the old stuff). I hope and pray that this combination of drugs will be the one that does the trick. The arsenal of drugs is vast, but I don't really care to run through all of them.

My friends and colleagues at the Health Sciences Library sent a gift basket and bag last week, one of the things that they put inside was a handmade book of pictures and quotations and messages. I read it cover to cover and was amazed at the power, the capacity to care and the love that poured out of that book. I plan to read it at least a bit every day, to help to remind me that there is abundant hope out there and that I am surrounded everywhere I turn by people who care.

That must be the lesson to learn at this juncture of my life.

PS: If you have not already done so, read Jamie's blog on the last clinic visit for a funny take on how they (the doctors) see us. You can click to it from the left side of my blog (link).

Ch ch changes

The blood tests from the ER included a CA 125, the infamous cancer marker. It went up, not up a lot, but up not down. The handwriting was on the wall and I knew that the chemo was going to change again.

Today I went for the scheduled clinic visit. The medications have changed (so I celebrated in advance with a hot shower, after two months of tepid), and since the new drugs don't have those hand/foot or other weird side effects that is a plus. The downside is the new schedule:

Two weeks on, one with one drug, the second week with the combination of two drugs, one I had last year that causes some of the neuropathy and other nausea and bad side effects.....then a week "off" and begin again. For six cycles, they say. I guess unless this one doesn't bring those damn numbers down either.

But what are you going to do? The alternative is not pretty and so visitors Pam and Brenda (and Jamie, but she left before the dripping started) went to the treatment area and after only four hours from the scheduled time of 11 AM, I got into the treatment chair and started the new process. Everything went fine, I am on steroids and anti-nausea drugs this PM so we all ate heartily for dinner, take out Chinese food and now will soon retire.

More later but this is just is just to let you all know that I am still in there, trying to figure out how to beat this cancer into submission. It doesn't always appear like my team is winning, but I am not going down without a fight. Seriously!

Good night, don't worry and yes, still keep me in your thoughts and prayers. Especially on Tuesdays!

Nine Hours in Purgatory

OK, I am not Catholic and really don't believe in purgatory, (or hell for that matter) but if you were looking for a model, you could try going to the Duke ("pardon our construction") Emergency Room after 5 PM on a night when someone was being treated for a GSW (gunshot wound for those of you who don't watch ER).

Backing up, last Thursday, I was feeling mostly OK in the AM and had made plans with Jamie to go to an outlet store that has very cute children's clothes (which mind you, Sofie doesn't need any of right now, but it was 50-70% off and I had a coupon). We highjacked our friend Susan who had turned me on to this place originally and off we went. When Jamie picked me up at 11, I was having mild "gastric or stomach" pains, nothing new. But a few hours later, it started to get more severe and by the late afternoon, after a 1.5 hour nap, I called my nurse. The pain was now constant, worse upon taking a deeper breath and spreading from tummy to chest. Not left side, however, so I did not think heart attack, but because of those pesky emboli, I was a bit nervous.

Teri advised getting to the ER, which despite my protests, I did. Jamie was at that point at the end of a massage, but came over to go with me and our friend (hero) Sharon came to do emergency Sofie care. Sofie was none too pleased, but she and Sharon get along really well, so that passed.

When we got to the ER about 6-ish, the place was jammed, literally not a seat in the house, anywhere. You have to go through a metal detector. But I checked in with "chest pain" and you know I got triaged right away. They did the usual vitals and then started an IV through my port.

And then we waited. Jamie was afraid of catching something in that room (filled with snot nosed little babies and people making the sounds that one associates with flu....and all sorts of other bad stuff). So she got a mask. With her bald post chemo head and the mask, everyone kept thinking she was the patient. People were being kind of protective of the damn chairs, and this pissed Jamie off. The family members who were well would not get out of their chair so someone who was obviously unwell (Jamie) could sit. Not fun. We ended up outside the bathroom, where periodically someone would run in and you could hear the unsavory sounds of vomiting or retching. Lovely. Very healing.

Anyway, to make this long story shorter, a synopsis: After checking in several times post 7 PM shift change, it was clear that they were jammed more than usual with the "gang related" shooting. There were four to six police officers, they were on "lock-down" in the back, so no visitors could go in there, etc. They were completely overwhelmed, complicated by the fact that the people at the front desk were surly. Not polite, not helpful, not even neutral, surly!

At one point about midnight (we were both very exhausted and I had not yet had the chest CT that was ordered before 7 PM), one of the doctors I know walked by and we chatted briefly. He had not been informed I was there and was surprised we had been waiting, at this point, nearly six hours. I was getting more and more pissed at the general bad functioning of this ER. Yes, this was unusual, but the lock down and GSW madness was over about 11 PM. Yes, they were under construction, but that does not have a thing to do with staff receptiveness or poor attitude.

The providers at Duke are superb, so far, with the distinct exception of the ER personnel and mostly this refers to the lack of attentiveness from the reception/triage folks. If someone had periodically stepped out and apologized a bit for the delay or offered some concrete idea of what was happening, people would not have been so miserable and pissed off, but they did absolutely nothing. And when you asked, they dismissed you with a very negative attitude.

Finally at about 1 AM, I had enough. I went through the door (left open by someone) to the treatment area and found a doctor. I asked him to find out how long until I would be seen. I made it clear I was not moving until I got this information. About 15 minutes later, he came back, very nicely letting me know he had talked to the charge nurse, (Norm) and that I should be able to get the CT "soon". He also gave me all my lab results. At 1:30 or so, when nothing more had happened, I went to the front desk and I asked (very politely) to speak with Norm myself. When he came to the desk, I asked him to step out. I looked him in the eye and said that if he could not get me to the CT area in the next 30 minutes, I was going to pull out my IV and leave. Within 15 minutes I was in a wheelchair and on my way. In all the chaos, my CT order seemed to simply have been overlooked. Following the test, I went to a treatment room. I had already had the EKG and such, so basically, although they did not know what was wrong, they knew it was probably not a heart attack (which I knew in the first place) and not more emboli (which should not happen since I have been on the blood thinners). By about 3 AM, after the medical student (not a doctor, never saw one of those) had examined me, I was ready to go. Jamie was just on the edge of falling down, it was pouring down rain outside, and I had to get home.

Finally, I was discharged, but not without signing the paperwork, to promise to pay the co-payment of $250 for this damned experience. I think they should pay me. I plan to contact patient relations and talk to someone, they (Duke) can do better, even during construction.

I have worked in ER's, I know it is chaotic by nature and tough, but lacking human touch and overall manners does not help. Stay tuned for more on my crusade.

When we got home (my house) Jamie immediately went to bed, but I still had Sofie's snake costume to create. We had gotten all the supplies (her school has a Book Character Day and it was Friday). So about 4:15 or so in the AM, I got out the fabric paints and started painting! I am no artist, but I had it all sketched out, so it went pretty fast and even the glitter paint (for the scales on her back) went on quickly. I dried it a bit, first by blotting with paper towels and then with a hairdryer, since the paint said allow 24 hours and I had about 2.5 hours at that point. And at about 5:30 I crawled into bed to sleep until 7 AM.

Sofie got up bright and early, remembering that I had said it would take extra time to have breakfast and then do all her face and body painting. I painted her face and her arms (even drawing scales to match the ones on the front of her shirt) on her and she was terrific, cooperating all the way. Jamie's blog (you can access it from my site) has a few photos, I will post those later.

All in all, after purgatory, once again, a six and a half year old made my morning bright. As soon as she was at school, I went back to bed, where I mostly slept the rest of the day. That nine hours in purgatory took a lot more than that to catch up!

Signs of recovery

The cold that would not leave my body seems to finally be on the way out. Last night, for the first time in weeks, I was able to sleep with just two pillows, not sitting up. And the best sign, one that I feel is very significant: today, for the first time in over a month, I wanted coffee, not tea. I brewed a small pot of Peet's and it is like heaven. I had been avoiding it (dairy, plus when I am sick, coffee loses it's appeal).

Today is Jamie's sixth and final treatment at Duke. I am going over there soon to hang out with her. I have to bring my car to Subaru first, but then I am spending the day with her and then she is coming to my house, I think, for supper.

Sofie is very excited that this is the last treatment for Jamie. She wants to spend more time at the condo (and probably away from me) and when Jamie begins to feel better, that will be possible. So Sofie is a happy girl.

I have just begun to use the word cancer with her. We got a kids workbook (Mom has cancer, now what do I do?) and her reaction makes me think she has known all along. Kids are smarter than us sometimes. And they listen to everything, so I am sure she has heard conversations.

Yesterday, during my regular "hit the wall" resting period, Jamie got Sofie from school and after some trampoline time (which she truly needs to blow off that last burst of kid energy), Sofie and Jamie worked on her homework, which was fractions. The homework folder comes home every Monday and goes back on Friday. Sofie got really engaged in it, Jamie was very patient, and they did all six worksheets in one sitting. A remarkable achievement for this household!!!!

Then, finally, Sofie, Jamie and I went to the Chinese restaurant for dinner, as a reward for doing all her homework so well. We still have nightly reading, but this was a good thing.

Sofie is still trying to do things that push Jamie and I together, such as suggesting we all snuggle in my bed while doing the reading. We are on to her, however. But she does seem to like it a lot when we do things as a family. Which is why we are planning to do some vacation things this year together. A beach or mountain trip, possibly some even more exciting prospects. Creating family time and memories for her.

Sipping coffee, looking out my home office window at the sunny day and listening to the sounds of morning, that is a good thing. I feel a sense of things perhaps turning. Having a cold and cough for a month is very tiring, both for the body and for the soul. I am so happy that it seems to be coming to an end. Perhaps I can figure out what I really feel like after it is gone.

Today, life is good.

Hitting the Wall and Some Drama

It has been a lot harder to get back to blogging without having all the extra help around here that both Laurie (and Maya) and Alan provided. Jamie continues to stop by and relieve me a lot in what I have come to dread as the "hit the wall" period between say 4-6. If I did not actually nap (sleep, not rest) during the day, you can pretty much count on my having an urgent need to lay down during this period of time.

For example, this past Saturday. I nearly had a meltdown in Costco. Sofie and I had a nice morning, we made pancakes and she ate four (growth spurt, again?) and then we went to the Museum of Life and Science in the afternoon and met up with our friends Jamie (mom to Emma and Jacob) and Taylin, who is about Sofie's age. Jacob did not join us, so it was "girls afternoon out". They were previewing some of the very cool and colorful dinosaurs that they are building to recreate their "Dinosaur Trail" that was leveled a bunch of years ago by one of the bigger hurricanes....Floyd or something. The kids loved that part, they we went outdoors so they could run off some of the energy they seem to accumulate. Wish I could transfuse some of that!!!

I don't know how parents with more than two kids do it. Keep track of all of them in public places. I could ususally track one or two, but constantly was down one kid. It is a pretty safe space, with many parents all around, but I still worry. It is my nature. Sofie was in a bright colored shirt, so easy to see visually, but she is fast and kind of sneaky. So I kept losing track of her or one of the other girls. Fortunately, there were two moms there, so I was not alone in my need to keep visual contact, at least some of the time. But for those families with three (or more) kids under 6, they must feel like they are losing their minds sometimes.

It was one of those lovely not quite spring days, cool but sunny, and just great for the kids to run around. And they did, also taking time for a snack break, a train ride and time to build with the Kapla blocks inside the Museum as well. They kept up this pace for a full three hours, before the moms decided to call it a day.

I needed gas and only three items, so we headed to Costco. It was about 3:30 when we got there, and I got and paid for the items pretty quickly. I could feel that wall approaching, so I was trying to herd Sofie out of there, when she pointed out we had not had a hot dog. "Mom, that is the best part of coming to Costco", she stated with emphasis. "And I am starving" (just in case the first argument did not get to me). So we stopped, had the hot dog and while she was eating it, I remembered I was *also* supposed to get more kid bathing suits (cheap, sturdy enough for her to use all summer and they go fast), and the weekend roasted chicken. So we headed back into Costco after the hot dog was consumed (a half hour process, my daughter is a dawdler). Then she insisted in picking the colors of the bathing suits, when I had intended to simply duplicate the two already purchased a week ago.

At some point, Jamie called me and I remember telling her I was having a meltdown and had to get out of Costco before I could even talk to her. We hurried to check out, got the stuff in the car and I headed home. She was already there, and took over while I collapsed on the bed for an hour and half.

That tag-teaming thing works well. Then, once recovered, I was able to get up, get Sofie bathed and hair washed and fed and finally to sleep.

Weekend are a little tough, energetically, if I attempt to do them without a planned break where someone has Sofie for a play date. This was underscored on Sunday, a damp, coldish day with lots of on and off again rain. After ERUUF, we had a visit from my work colleague Kate and then realized it was too late for the Chinese restaurant I had promised for lunch. A minor meltdown later (hers this time), she was satisfied with soup and grilled cheese sandwiches we made together.

Then one video later, we went to go to Betty's 50th Birthday Celebration at her home. I thought we would be there for less than an hour, get the Chinese food and be home before bedtime. But they have a hot tub and Miss Sofie is a big fan, so that took about 45 minutes, so in fact, we ended up being among the last to leave! Too late for the Chinese restaurant again (it was open, but it was too late for her, bedtime-wise). I will share just a bit of the drama that ensued:

"Debra, it is all your fault" (she calls me Debra when she is pissed off).
"You lied to me"
"Pleeeeeeeeese can't we go?"
"Debra you made me sad"
(refusal to get into the car during this discussion).
Jamie finally got her into my car.

The begging and whining continues:

"Mom, there it is (as we turned and passed the restaurant), it is open. STOP!!!!!"
(me) "Sofie it is too late to have dinner at the restaurant, we will do it another time"
"Debra, you are a liar and a promise breaker...and I am going to tell everyone in my school, all my friends *and* my teachers tomorrow that you lie".
(me) "Sofie, I am not going to talk about this anymore, I made the decision and I am the parent" (OK, a lame argument, but all I had to go on)
Stony silence in the car. Then she begins to make some sort of annoying popping noise, all the way home. I resist the temptation to tell her to stop. Score points for my team.

We arrive home:

(me) "Get into your pajamas and I will make some pasta, your favorite kind" (which is currently chicken fettuccine Alfredo, which I can make in 15 minutes flat).
"I am not talking to you....ever!!!!" Door slams to her room.
(me) "You have ten minutes to put on pajamas, I will set the timer"
(me) checking in at about 8 minutes, she has not even started to undress.
(me) "Sofie, if you are not in your pajamas when dinner is ready you will go to bed without dinner tonight. I mean it". (you have to follow through with threats and I would have).
[door to her room opens]. With dramatic flair, she opens her pajama drawer, starts flinging her sleepwear all over her room, finally making a choice and getting into the pj's.
(me, trying to be calm). "great, now dinner is ready, come eat"
Poor baby. She is so tired at this point, she eats only half of what I made her and then asks for dessert. I remind her that she ate a huge piece of birthday cake already. She stomps into the bathroom and takes about 15 minutes to brush her teeth.

Finally, just before ten PM, she is down in bed, asleep. She still looks like an angel when sleeping, despite the snoring.

And I wonder why I get tired?

It was Oscar Night, a night that only 7 years ago, found me dressed up and having a blast at the Academy of Friends annual Gala, mingling with friends, eating gourmet treats and dancing until my feet hurt. Tonight, I was DVR-ing the whole show and I finally began watching at about 10:15. I skipped through almost all the speeches. The show must have run over, because it shut off when Melissa got the Oscar for best song. (good for her!). I loved that she kissed her wife Tammy in full view of the camera. The Hollywood crowd is way too cool to look shocked. And Mel Gibson did not seem to be in the house, thank goodness.

And the funny part is, I did not miss the party, the shoes or even the food at all. I was happy with my decaf tea and a piece of toast.

Life sure changes.

Nightmare at the International House of Pancakes

I forgot to post this a few days ago. On Sunday, I made poor Alan go with us to IHOP. Why I selected IHOP, I am not really sure, but I got it into my head that we should do it. Early in the morning, before the Church rush. Well, we were less successful on the timing, but we got there, with a 20 minute wait.

But here is the kicker! I opened the menu and to my horror, I noted that I now qualified for senior meals. At 55!!!

And to add insult to injury, the meals are all named "senior pancakes and bacon" or "senior rooty tooty fresh and fruity" (as it I would ever actually order that outloud). I couldn't do it. Not for the couple of dollar savings. I just couldn't. I admit to feeling about 75 some days, but I mostly don't think of myself as a "senior" quite yet.

Alan pointed out that if I made different restaurant choices (that is to say, ones that are less suburban and chain oriented) I would not have to deal with this insult. Before coffee.

I just had to share this.

On My Own

Alan departed yesterday and so today I am flying solo. Since the morning time is usually my best time of the day, I got up, started my/our morning routine (pack the nutritious lunch, try to get her to eat a decent breakfast) and it all went rather smoothly. I told Sofie that today was going to be a "not so cold day" so she was all excited and wanted to wear a short sleeved shirt and shorts. I nixed the shorts (it is February, for goodness sakes!!!). Big complaints. But she managed. Somehow, all my matching of socks when she was a toddler have not seemed to have had the right influence and her sock choices are often quite dramatic in terms of contrast to her outfits. Today was no exception. It is a first grader thing, this choosing of the clothes. And I just have to breathe through it, and let her go. Sometimes I have to intervene, however, like yesterday when she had a pair of striped leggings on and was about to "match" it to a striped top in a completely different color scheme. I could not, in good conscience and as homage to "What Not to Wear, Kids Edition", let her do it. I convinced her to wear the cute coordinating red top instead.

For the next couple of weeks, until Brenda arrives the evening of March 5th, I am on my own. Well, not exactly, Jamie has been in the wings, was over yesterday to go to the airport with us (which was good, because about that time, I kind of hit the wall on exhaustion again) and in general, share some dinners, etc. She has been also sharing in the Sofie drama. Sofie has been in full out drama brat mode some days, with tears, shouting, and a lot of oppositional behaviors. I know she is going through a hard time with all of this.

One of the frequent discussions (dare I say arguments?) we have is that it isn't fair that if I am not going to work, she has to go to school. Nothing I say to her is going to change her little opinion of that.

Homework and all that are still sure to incite a bit of drama, some tears, and require a whole lot of patience on our parts. Math (they give them these sheets with 100 problems, yesterday it was the 9's for addition). So she did the "easy ones" first, 9+0, 9+1, 9+2, etc. But then really balked at trying the harder stuff.

She is still struggling with reading too, although we are persisting in the nightly plan of her reading to us and then we read to her. Her snake obsession continues, the reading material of late has been her new book on King Cobras (which has a snake model embedded into the book, so she can learn all about the digestive system, etc.). She loves this. Not my idea of ideal bedtime reading, but if that is what she likes and wants, who am I to disagree?

I have made a short list of "projects" to try to tackle over the next couple of weeks. They include prepping for taxes (always a favorite), organizing the disaster I call my office, and attempting to clear out some of the huge amount of clutter and toys and junk from Sofie's room, without her really noticing that I have pared down some of her collections (stuffed animals, plastic whatevers from who knows where, all the stuff of a six year old's room). So far, I have only made a dent in the Sofie clean up but I have a week here at least to go.

I loved having Alan here, and Laurie and Maya before him. But I have to say, I am also looking forward to some days just alone. I need to have some time by myself (really by myself) to process the past two months and figure out what I need to move forward. Friends have suggested getting a therapist (I had one a year or so ago, I could go back to her I guess), but I am not sure that "getting to know you" thing with a new therapist is what I need. If there was someone who I clicked with, great, who had some experience dealing with people with potentially terminal illness, but the therapist "try outs" (for which I have to pay and then make the tough call) well, that doesn't thrill me. Am I resisting because I am afraid to go there?

Or is it after a variety of therapist experiences, some great, some a disaster, I am just gun shy?

This is my (very precious and possibly shorter) life we are talking about. I need the "right" person and I am not quite sure how to proceed.

More food for thought on this week on my own.