Another Lost Weekend

Sofie and Emma did a sleepover on Friday night. For anyone who hasn't experienced this with little girls, sleeping is the last thing that happens. I waited and gave "warnings" to them, but by 11 PM, they were still up, singing to each other. Very cute. But I know that this would mean crabby girls the next AM, so I took Sofie out of the room so Emma could drop off to sleep. And Sofie did too.

Jamie had Sofie with her this weekend, and will bring her back in about an hour from now. So I had a list of "light" projects around the house that I never get to, to accomplish while I had hours open. It was nearly a total bust. I did get Sofie's room picked up, mostly, and that is a good thing, because nobody could even see the floor in there, but cleaning the fridge is still not quite done (did the frozen food inventory yesterday, but more to clean out before the evening is up).

I have just felt punk all weekend. It is as if my body knows when down time is coming and all I want to do is sleep. I did go to Sharon and Tracey's for dinner last night and was late coming back, we had a good talk about the future. But today, I was feeling totally sluggish, nauseous (where does that come from all of a sudden?) and just crappy. I finally gave in to the puking (felt better but still feel queasy now) and then slept some more. Didn't even really read the NY Times. It was just a lost day.

I did have a couple of great conversations with a friend here and with Kile, so that was a blessing yesterday. Things are just coming up for me that need saying and Kile's timing was perfection, so we covered important ground.

So once again, I had better adjust my expectations for what I can "do" on a weekend. And perhaps it is time to ask for some help. For chores and such that go undone. People have offered, but it still feels weird to accept that help, but I guess I need to practice if nothing more. It is not going to get better, and thing still need doing.

ERUUF asked me to come up with a day project which will likely be a combo of yard work and window cleaning, something I would normally tackle in the fall. But not this year!!

I have to include in the mantra, it is a blessing to give and receive. It is a blessing to give and receive....

A Day of Consternation About....

The other night, Sofie got one of those looks on her face, a worried kind of furrowed brow look and I called it her "consternation" look. Then being the one who feels responsible for her expanding vocabulary, I defined that. And just for fun, also said it sounded a lot like constipation, but that was a different word all together!

Today, I had another day of consternation....about constipation. I will spare you all the details, but suffice to say that one side effect of this whole cancer/chemo thing is that I miss being a normal person in the bowel department. It is either too much or not enough. Since being back here from CA, I have felt bloated and uncomfortable too many days. And even strong Peets coffee isn't working.

And today, after getting all dressed up in work clothes, and going to two meetings before noon, I realized I really needed to go back home, get in comfy clothes and just relax, hoping nature would take its course. So far, not so good, but I remain hopeful.

This was just a short, hopefully not TMI post about what is truly going on for me this week. That plus trying to move through my to do list at work! I still have over 700 hours of share leave, amazingly, and I am planning to use that up before officially starting on the less financially robust short term disability. But I will likely stop being there on any type of schedule by the end of November. I am still amazed at the way colleagues, friends and anonymous strangers came forward to donate hours.....blows me away.

Time to go get the kidlet soon, it has been good to just nap and relax and stop feeling so miserable about my body today. Tonight, Sofie has her therapy and then we go to her choice of restaurant, which is likely to be the same old same old: Golden Corral. She loves being able to make all her choices there, independently. I play it safe and pretty much eat the same type of food each time. They are sure getting their money's worth from our visit, however, as my capacity is quite diminished!!

Long Term Napping

Today was chemo again, it seems to be just part of my weekly schedule these days. I had an unusual experience, checking in fifteen minutes early for my 9 AM appointment, the buzzer went off at five minutes before nine!! I was in there, with Marcella, one of my favorite nurses, in no time. So efficient.

I hadn't slept well at all the night before, so once huddled under my cozy lap blanket, warm from the warming bin, I tried to read the NY Times, but kept nodding off. The treatment (both the chemo and the Avastin) were done by 10:30 and I was out of there, early for the hematology clinic. Got in there about 11:15, not bad, since the place was once again packed. My levels for the Coumadin are bouncing up and down as they play with the adjusting of the drug and the vitamin K (critical in Coumadin dosing). This time, it was too low. Last time,way high. So they keep trying, adjusting the dosing for each night. Good thing I have one of those pill holder thingies for the night dosing too, it makes it easier to remember when I set it up a week in advance.

Got home, just so sleepy still and figured I would nap for an hour or so then begin the post chemo to do list. I usually plan to grocery shop on Tuesdays, since it is far easier without Sofie in tow. And faster. But it was not to be! I lay down, set the alarm for 1.5 hours from then and found myself still tired, so I reset it to be in time for kid pick up and just slept. And slept. A total of about 4.5 hours!!! Nothing at all got done. Which is not so ho hum as it sounds, I have limited energy in the night, so these daytime lists help keep me somewhat on top of errands, like the post office (nephew's birthday present) and the dry cleaner, etc.

But it wasn't to be. Picked up Sofie at school and she entertained herself for a while, I got some stuff out for dinner. Jamie arrived a bit after 6 and I was off to a workshop at Cornucopia House (support place for people with cancer) on creating a "family love letter", which is essentially about all your documents, and your wishes being written down where people can find them. I am actually doing a pretty good job in this area, (being the control queen I am) so it was helpful, but not earth shattering!

Got home and Sofie was already in bed, but as she has been doing lately, she arrived in my room about 2 or 3 AM and snuggled into bed with me. I don't even fight this any more, not just now. She obviously needs to be next to me, and I her. And as long as she stays more or less on half of the bed, I can sleep pretty well. Except for the frequent trips to the bathroom. This thing is now apparently pressing on my bladder as well as other parts of my internal organs and that makes it in charge of the peeing. I long for a full uninterrupted night of sleep. Something I seem to get in a hotel, but hardly ever at home. Cats, kid, bladder, all conspire to have me up two to three times in a six hour period. No wonder I am tired in the afternoons!

But I got a decent night's sleep, comparatively, last night. Taking the Vicodin pretty regularly these days and that helps. But I hate being dependent on a drug to kill the pain and help me sleep. I don't exactly worry about becoming addicted (would I get to go to Promises in Malibu if I did?) but I do worry that I need pain meds now, which seems waaaaay too early in the decline period. Or is it? To me, pain is a sign that things are not getting "better" and if it keeps increasing, I worry that the time I have is shorter than I think. How on earth will I get the whole "to do" list for my life into a shorter framework? There will not be any extensions or do-overs this time!!

Another Monday

And here I am at work, trying to make my time left here at the Library work. I have been busy sending emails mostly and plotting out a few things, but I am also aware of how uncomfortable I am.

My belly woke me up about 6 AM today, in quite a bit of distress. I took a Vicodin (amazingly, I take them without much fuss these days, a huge change from a few weeks back). Then I lay down for 20 minutes to see if the pain would cease. I put the hot pad on my belly, which makes me feel better, even if it really doesn't do anything.

So here I am, not feeling 100% by a long shot, but glad I am here. Tomorrow I go to chemo again, I already did the labs. All part of the goofy routine. It is already nearly 2 PM and I am beginning to feel sleepy, in need of that afternoon nap.

I don't know how people live with chronic pain, I really don't. It is the most distracting thing. and I am not very good at this. But I am trying to push through a bit more. And the Vicodin seems to go right to the pain and not too much to my brain, so I feel a little better taking it when I know I have to drive on it later on.

Jamie arrived home last night from her retreat and basically took over Sofie at the junction of supper on the table. So I was able to lay down, which I really needed to do, and just vegetate. I was one tired person.

The Reiki workshop from Saturday was great for me, I abandoned my inhibitions about touch on my belly and just plunged in. I was afraid I would be too needy (needing the Reiki but not so able to give it as well) but it seemed to work both ways. I left there feeling pretty energized, considering that I was there for nearly 8 hours.

I have a somewhat busy week planned, so I am actually glad that I have chemo tomorrow, to slow me down at least one day. What kind of person looks forward to chemo as a method of relaxation?

Shared Tears

Last night, while we were having pancakes for supper (Sofie's idea), we started talking about Grandma's dog Cooper, who is quite old and this weekend will be taken to the vet for his last visit. I tried to explain to Sofie how loved Cooper is and why Grandma knows it is time for him to die. And how even though this makes Grandma sad, she knows it is time. That sometimes animals and people die, even if we love them so much.

It seemed to lead naturally to opening up a discussion about death in general. At first, Sofie looked sad and when I asked her, she said she didn't want to talk about it. But I gently pushed a bit, and reassured her that she could talk to me about anything. There was a tear escaping from her eye as she looked down at her plate.

"Are you worried that Mommy might die?". Tears start to fall, just at the corner of her eye. She nods her head yes. "Like the girl at camp who's Dad died?" Uh huh. I took her into my arms. There really aren't planned words for this kind of talk, they just come.

I told her I didn't want to die either, but that sometimes cancer makes a person die, even if they don't want to. I told her I am still fighting and still here for her. And that I would always be. And that, for always, I would be like an angel for her, always there if she needed me.

Sofie just let the tears flow and I did too, she is obviously carrying around so much more pain that I even thought. We talked about how good it is that Mama Jamie is feeling better and that her cancer isn't needing treatment anymore. But that I still do.

My little girl is so protective of me, but I want her to be able to let it go like this, with me, and let us share tears sometimes....I haven't really cried with her. I guess I have been protecting her too, but perhaps it is time.

Last night, we snuggled up in bed to read her book and I could tell she didn't want to leave. So I just invited her to sleep in my bed last night and she relaxed, curled up next to me and dropped off in a few minutes. Sometimes that is all it takes, I guess.

And truth be told, I wanted her next to me, too. I feel like I am hoarding all those tender moments, stroking her hair long after she falls asleep at night, so I can remember them always.

I hate that I have to have these talks with her, that she is going to lose me too early. It isn't fair, I waited my whole life to be her mother. I am determined to make the time we have together time that will be remembered with love. And tears too, I imagine. But I am so not ready yet. I want more time.

Therapy at Work?

So, this week I told some of my colleagues that I had a plan for transitioning to disability. It was hard to talk about and ironic, also, because this week, I actually felt better once I was here, working away, than I had previously. Especially yesterday, I felt pretty crappy coming into work, but then got fully engaged in a project I am working on with my colleague Susan, and by the end of the time I had planned to stay (about 3 PM) I did not want to stop, and stayed another hour and a half.

Sometimes, I just have to let it flow. It has been both a relief to start making an exit plan and also very sad. I had planned to retire here, at Carolina, at this library most likely but not for a long time (11 more years). So this early exit is not without sadness.

I have about seven or so work weeks left, then it will be less scheduled and more random, as I use up the share leave and then go on the more limited "short term" disability. I am also going to apply for Social Security disability as well, which evidently I can collect at the same time. Who knew? So I should be more or less OK, financially except I have to pay the full cost of my medical insurance (right now that is me and also Sofie) which will be well over $500 a month. I don't qualify for alternate options since I don't have five years of service here. Bummer.

But at least I have health insurance. Which is a blessing when your health care is over $20,000 per month (with those three weeks of chemo per month, not to mention the acupuncture, the medications, all of it).

So I am trying hard to process it all, work on the multiple legal paperwork I have to complete and overall, keep my attitude as positive as I am able to do.

Not always easy, but I am trying. I know Sofie is also reacting to so much of what is happening to me, in her own way. And I want to be there for her, as much as I am able.

So for now, I will keep it together here, do what I can do and accomplish what I can, then move on to the next chapter. I want to stay attached to the Library for as long as I can, I feel so connected to this place now and so grateful as well, for the incredible way they have been dealing with me.

Gratitude is my new attitude. I like the ring to that.

My Bay Area Getaway - A Long Story

So last week was a busy one, since finding out just how badly I was doing on this current chemo. But it was also a great week, since I had a secret plan (which can now be made public) that was in the works a few weeks before. So the emotional processing was put on hold in favor of what my therapist calls "those events to look forward to".

I got the crappy news last Tuesday and on Wednesday afternoon, after work, I boarded a plane to Oakland, CA for a three (full) day holiday with the 25th Anniversary of Passport as the starring event. Brenda picked me up late at night and we talked until after midnight which was *really* late for me by my current crash by 9:30 standards.

You have to understand that anything Brenda lends her hand to is going to be highly organized, and put on an Excel spreadsheet. So it was, that from the moment of my arrival Wednesday night until my departure on a red-eye on Saturday, my every move was registered, noted with timeframe parameters and my transportation provided (by Brenda!!). It was above and beyond. Which is why she is so damn good at her (real) job as a consultant!

So back to the fun. Thursday started out with a lovely breakfast with Lisa H to catch up on life and such.

The the girly preparations for Passport began. On to Cuticles, a new place near Brenda's for the deluxe mani/pedi experience, complete with lightly scented scrubs for the legs and hot stone massage for arms and legs. Heavenly, I was almost sad when the experience ended.

After a little break we were off to make up, on Fourth Street in Berkeley. Our makeup artist was a transgender woman who did a great job. Ah, how lovely to be back in the Bay Area. A little overly enthusiastic on the eyebrows, but that was easily notched down a bit. This experience is not one that would not happen in Durham, I don't think. After ensuring that neither of us were overly made up as street ho's, we dutifully purchased an item or two and left to transform ourselves into Passport guests.

Back at Brenda's we began the transformation into party clothes. My outfit was kind of a default, after worrying about it for a few weeks. Black evening pants, a hot pink floaty top and voila, done! Those pants have been worth whatever I paid for them about seven years ago. They have been to their share of events. B was stunning in her wrap around black dress with plunging neckline. After we were done, she convinced me to go outside to do some photos.

And there it was, a black stretch limosine!!! What a terrific surprise, and not at all expected, that is for sure. Claudio was at the wheel and gallantly came to open the doors. It is not easy being graceful when entering a limo, no wonder Brittney flashed herself and the world getting out! Thanks to B and to Peter Balon for conspiring to do this and making the arrangements.

We drank a glass of Italian champagne while we drove into SF. We stopped again, near Moscone, and surprise, picked up Pat Dunn. Another unexpected delight.

And we were off in style to Passport.

The pre-show festive buffet in the Wells Fargo lounge was great, we staked out a small table and Brenda went into action again, bringing people to visit with me at the table, so I would not tire out. I felt like the Queen Bee. I got to visit with Tim Wu and Jim Hormel, with the wonderful and gracious Assemblyman Mark Leno and so many others who had no idea I would be there at all. I truly miss folks in the Bay Area and this was so wonderful, just having party visiting time.

And then on to the show. We had tickets for row H, but somehow found ourselves sitting in the first row of chairs right by the stage by the time the show started. Don't ask. It was a terrific perspective, especially of Dita von Teese, the closing act, who was last seen coating herself with bubbles in a champagne class.

The show had the usual Passport energy and vision, and the inclusion of the Children of Uganda (all kids from 8-18 who have been orphaned by HIV/AIDS) was wonderful. I especially loved the part where they danced with the kid models in the children/teen segment. Very hip hop meets tribal. Pure energy.

Brenda and I attempted the after party, but I have to say, I was getting tired and all the folks on the dance floor appeared to be of a different demographic than mine, by about 20-30 years. I felt very old. So we said our good-byes and took our limo back across the bridge to home. Another night of midnight bedtime, but well worth it.

The next day, we had a leisurely start, with a visit from Nancy Frank for coffee and then we went into town for some shopping at, you guessed it, Macy's. We mostly just looked and did not buy, then headed to the new food court, by Bloomies (something new since I left) for a delicious lunch at Out the Door, the new place opened by the Slanted Door folks. Oh my, what I have been missing.

And after this, I was taken to Al Baum's home for tea. His new place, on Jackson, which I had not seen with his wonderful changes. I had been there when it belonged to another couple (went to a cocktail party there years back). It was transformed, into lightness and open space.

Al and I have known each other for years, in a donor/fundraiser relationship. I cannot even remember now, in what context we met. I have asked him for money over the years and he has been most generous. And most gracious when turning me down. But these days, I relish the fact that we meet as friends, with no fundaising agenda. And at this visit, I asked him to wear his social worker/therapist hat a bit with me. We talked a lot about the struggle I am having to figure out what is the best thing for our little challenged family, Sofie, Jamie and I. We had just been "this close" to buying a house, then I got cold feet, scared to take on too much new debt, wondering what is the best choice, moving or not at this juncture, and put the kabash on it.

We just talked, gently. And he reminded me I can call him anytime. And I know I will. I value his perspective.

Al drove me (in a car, for all those readers who only know him from his now retired scooter), to Eileen and Pat's for the cumulation of this wonderful day. The "girl posse", well, most of it, was having another litter get together at their lovely home. The girl posse this time included our hosts, Eileen and Pat, Brenda, Pam, Carrie, Ellen and our guest girl, Dave. Unfortunately, Alan, Kerry and Lisa were unable to attend, but this little group was just great. We ate delicious food (which I thought had been lovingly prepared by them, but was take out from some extraordinary place, one of the reasons the bay area is such a foodie place). We talked, we caught up and then they just asked me to talk about stuff. It is such an emotional thing, to be surrounded by people who love and care for you, even from far away. It makes my life feel so rich.

I know I hadn't yet emotionally processed the newest news, the fact that the numbers aren't going down the way they are supposed to. And that my time on this earth is likely shorter than I had hoped. These friends get me. And they give me strength, hope and solace during the hard times. I am so grateful for them.

Dinner finally came to an end and we went back over the bridge to Oakland.

Saturday was my last full day of this mini trip and it began on a drizzly morning with a trip to Burlingame to meet my mom and sister at Stacks, a terrific breakfast place in Burlingame. We kind of figured this was a halfway point to drive from Oakland and from Palo Alto. We talked some and I was very direct with them about what was going on (and had blogged it before, so it wasn't shocking news). But as soon as I got up to go to the bathroom, they asked Brenda "what is really going on?". How much more honest and direct do I need to be? I am not making stuff up or trying to sugarcoat anything. Believe me, I am long past the need to do that in any situation. Cancer is best served up with integrity and direct communication. Life is short, mine is shorter than yours might be and I don't have time for games.

After the breakfast, hugs all around, and a drive back to SF, we went to visit my friend Kay who had recently come home with her newly adopted daughter Eva from Russia. I was sort of the impetus for this adoption (too long a story to tell here) and so I feel highly invested! Eva was a delight to meet, although she mostly speaks Russian. But Kay has gotten her a cell phone (she is ten) and boy did she figure that out quickly! They are bonding, in that way that children will test and retest the parent's commitment, but I think in six months Eva will find herself not only bonded, but adjusting and becoming part of her new world. And in a year or two, as American a girl as any other pre-teen. It is quite a big thing to adopt an older child. The issues I had adopting Sofie as a non verbal toddler are one thing, I could kind of tote her around, bring her to various therapies without protest, and eventually "mold" her a bit, but Eva is a 10 year person in her own right, in a new place, with issues of language, different activities than perhaps she ever had before (riding a bike, for example) and has to go to school through all this! I think they are a good match and that Eva is the child Kay was always supposed to have.

We just kind of hung out for a few hours, then Brenda, my tireless guide and driver, picked me up and we headed back over the bridge. I packed (not hard to do for the return trip) and headed out for our last scheduled event before my red-eye flight: dinner to break the fast (for those fasting for Yom Kippur) at Kerry and Wendy's. This was the first time I had a medical reason not to fast!! My friend Leigh also joined us, so we had a lovely little party of five. The food, not cooked by Chef Kerry, but prepared by Wendy, was delicious. Really wonderful to eat Jewish food, with good friends (Jewish and not) and just be so comfortable in their home. Kerry and Wendy are one of those couples that make me believe in forever love. I was there when they met, I was part of their wedding and I have stayed in touch over the years to see them both grow as individuals while sustaining a loving and rich relationship with each other, and welcoming friends like me into their lives with joy. I feel so loved there.

Finally, it was time to get to the airport for my 11:10 PM flight. I was in comfy clothes, ready to sleep on my flight. Thanks to the wonders of Mark H who donated the miles, I was in one of the "extended" seats, not business class, but more leg room (for my short legs!) and quite comfy. Nobody in the middle seat, either, all the way to Dulles in DC. So it was nearly like a direct flight. I slept about 3. 5 hours and was pretty rested (for a plane ride) when we arrived.

I arrived in the early AM, filled my to go cup with Starbucks and waited for my little plane to RDU. I got there and home quickly and then simply went to bed to sleep off the weekend, and get ready for another dose of "real life" coming up.

This trip was magical for me, in so many ways. I appreciate Brenda, Mark and everyone who made each step happen on the way. Photos will be posted soon. Promise!

Chapter Two: High Anxiety

Sorry but life once again took over and this is being written early Wednesday AM.

So, to deal with all the anxiety stuff: mostly over the impending CA- 125, for which blood was drawn at 9 AM Monday.

I called mid-day, the other labs were back but not the CA-125, which is usual, it takes longer I guess.

I called at 4 PM, my nurse Teri was not there, but the anxiety was getting higher, so I did the alternate nurse at the station call, reached Charlotte, but she said nothing was back in the computer.

About 5 PM or so, I connected with Teri, who reported that the lab was still not putting anything into the computer, so I resigned myself to having to let it be and learning at the clinic visit on Tuesday AM. Easier said than done, but I did it.

Woke on Tuesday with killer pain on the left side, which is unusual, it is usually on the right, near the liver. It really hurt, but once again, when I was asked "on a scale of 1-10 what is the level?" I hesitated, I am so ambivalent about grading it. I used the kid chart with the mildly wincing and unhappy face. And finally gave it a 7. Because I am a grown up and I am supposed to be able to do that. It *f-in* hurts, is what I wanted to say. But I remained polite.

In the clinic I finally found out what was causing the delay: the machine was broken! On the same ranking as "due to technical difficulties".

Dr. Valea and I had a very long heart to heart, and he went over the "what ifs" if this is not working. Which I think it is not, just knowing my body. Basically, the hard truth is I am obviously resisting all the drugs. The lesser used ones, still possible, have generally nastier side effects and might not do a thing either. So it becomes a quality of life issue.

I asked the hard question: how long?

His answer was sobering: not more than three years. And he said: "so what are you hoping to accomplish if you keep working until December?". He strongly suggested that I speed up the plan to separate from work and use the energy I have each day to parent and rest.

I agree. The hard part comes today, I will be talking with my boss, who has been on vacation for two weeks. This is not going to be fun, but the bottom line is that if I have only limited energy and very limited time (three years at the outside), then I want to spend that time with Sofie, and doing things that are closer to my heart. I need to move on.

I went up to chemo, signed in and got my beeper thingy (like at the Cheesecake Factory) and ran to the coagulation clinic, where I was seriously late for my 9:30 appointment, as it was nearly 10:15. Waited an hour and nothing beeped. Had the appointment, coagulation labs were better, so perhaps we are on the way to getting it balanced out. Coumadin, a pill, beats the shots any day of the week. Scurried down the hall back to chemo where I found out they had beeped me, but the beeper thingy did not work. I was read the riot act by the charge nurse to not attempt to go to another appointment when I am signed in for chemo (never mind that they have run two to three plus hours late sometimes, and I just sit in the waiting room). Then I waited a bit more, and then the thing beeped and I went back in. To find that I was assigned the one nurse I *hate*. I bit it and went like a lamb to slaughter with her. She is just off, she is the one who the one time I did have her, wanted me to sing while she started an IV. As if!!!!

She was her usually batty self, but I mostly ignored her. I got two units of blood, then the pre-meds, then the chemo (not the Avastin, Doctor V was concerned about the belly pain and held it this week). Then I gave myself my Procrit shot (Nurse T was put off that I wanted to do it myself). And got the hell outta dodge. The only good thing was I got to have a bed, so I napped a bit. Very helpful.

Oh, and the anxiety was confirmed at 4 PM, when I found out the number: 450. Up. Not good. We will do one more cycle (three treatments) and check again. Maybe even get another scan. But the process is clear from here on out. Time is not on my side and I am going to make sure I do whatever I can to use it well.

On that note, I have a special plan for tomorrow and the rest of this week. I will blog about that when I am back!!

Chapter One: Catching Up

Today was clinic/chemo day, and I will get to that in a moment, but first, let's rewind a bit to see how the past few days have gone.

I have been feeling very fatigued (from the Topetecan, the current chemo) and this weekend, my friend Nancy Frank (or as we call her, "Rosie's Mom") stopped by in Durham after business trip to Philadelphia. Sofie was on a sleepover Friday night, and I got Nancy at the airport not too much after the scheduled flight arrival time. Blessedly it was pouring, a soaking rain we have needed for weeks or months here. Probably not enough to save all my neglected, dried plants and trees, but a distinct improvement over drought.

Nancy and I picked up food on the way home, then ate and chatted before I crashed about 10 or so.

On Saturday AM, Sofie returned after attending a brunch with her sleepover hosts at ERUUF and we heard about CenterFest, an arts festival in downtown Durham. OK, I don't get out much these days, but I had not heard of that at all, but I had not even known it was happening. Sofie strongly declined going to ice skating lessons for now, so we got it together and got ready to go to the festival. For Sofie, this involved a shower, she had PE on Friday and she, well, reeked! So she went to take her shower and suddenly I heard a bloodcurdling shriek/scream from the bathroom. I got in there in a flash, thinking the hot water had scalded her, and then there was another scream. It turned out to be a rather impressively sized daddy longlegs. I tried to do a catch (and release) but Sofie was screaming "kill it, kill it". This from the little girl who loves snakes and has no trouble putting one around her neck. This plain old little spider was smooshed and flushed away. Sofie wanted out of the shower, but was still stinky, so I washed her quickly (under protest) and got her out of there. She was clearly very upset and it wasn't over yet.

After everyone taking a short afternoon nap, we headed to a fundraising reception for Equality NC, our activist group. They have been doing great things in the past year, and the party was at Sharon Thompson's home, a house I love and would move into in a NY minute. It is perfectly and wonderfully designed for parties, open space, and has a great master bedroom/bath set-up. Sharon is not moving however, so I just go periodically to her home to visit, and wish I could be there!

Nancy knew someone in Durham who lived in LA for years and knew her sister well, so was like a family friend. We invited Sharon to attend the benefit with us. We all lasted just about an hour, which was pretty good, considering Sofie came with us. We headed to Brightleaf Square for dinner at El Rodeo. We were finally able to eat outside there, in the summer it is too hot to really enjoy al fresco dining.

OK, back to the spider tale.....

The rest of the day and evening, Sofie needed someone to go into the bathroom with her, even if she just had to pee. That night I finally settled her to that near sleep place and quietly left the room. I had given her a positive message about how her snakes would protect her from all spiders. No dice. Five minutes later, she was in the living room, telling us she could not get the spider out of her head. I suggested sleeping in my bed (which usually works well). She agreed but insisted I get in there with her. So I went to sleep, kind of early. It was good, however, to get more sleep, as I never seem to have enough these days.

Sunday, we got up, made pancakes and I took Sofie to the first RE (religious education) class for the fall at ERUUF. She protested vigorously, but she went anyway. Then Nancy and I got back in my car and I did a round trip airport drop off and returned to ERUUF two minutes before the class was over!!! How is that for timing?

All weekend, I was in pain, from the hip (yep, that is back) and some in the belly. No fun. I was also anxious...for several reasons. Jamie and I have been house hunting with a realtor on and off, and had actually found a house we thought could work (everything on one level for me, since stairs are sometimes hard when fatigued). We thought we might put in an offer, but I was getting anxious about selling my house (it is a buyers, not a sellers market these days) and I was anxious in general about my upcoming clinic visit and the labs on Monday, when they would be doing another CA-125 cancer marker test. My body has been telling me the numbers would not be going down and I kept obsessing about this, the higher cost of the potential house and pretty much everything. Obsessing is not a good thing, and wasn't making my life any easier!!!

OK, more in Chapter Two, coming soon.

Monday Already?

I had a child free weekend until Sunday afternoon, and how did I spend it? The yard sale, of course, but the rest was mostly spent sleeping or resting, which I still feel like is a waste of time but these days, all I can muster sometimes. Went to see Nanny Diaries on Friday PM, then off to bed. Saturday after the yard sale, I was back in bed, sleeping off the early wake up call.

I have never been one for naps, sleeping in or all that, but these days, it seems all I can do. When I picked up Sofie at 3 on Sunday, by 4:30 I convinced her to take a little rest with me. We both slept for about an hour and a half.

So here it is Monday and I feel like I missed my weekend. I am not quite sure what it is that I would have done (perhaps simply finished reading the NY Times, I only read a bit of it again). But my body is in charge and I felt pretty crappy this weekend, both tired (low red count, I guess) and in some pain. I need to plan more play dates for myself when I have the time off.

I did go to ERUUF with my friend Deb and we attended the orientation together. I have been attending for three years, but never really "committed" to this. I think I am ready, and I am happy that Deb got me there yesterday.

My plan for this week is to work as much as possible for at least the first four days, and then if I need to, collapse on Friday. I don't have the stamina for a full week anymore, not by a long shot.

Oh, funny thing this am: I got up early (still dark) and got showered and dressed for the meeting I am about to go to. I didn't notice until I got out of the car with Sofie to drop her at morning before school that I was in black, not navy pants, and my navy linen blazer. Black, navy, it all looks the same in the dark. I ran home and changed before showing up at work in that fashion faux pas.

I am a fashion disaster, pure and simple.

Sigh.

Letting Go of Possessions

Yesterday, the yard sale to end all yardsales happened at the home of Betty and Delma, who have been trying to de-clutter their home of all sorts of things for months. It was a multiple family sale, and Tracey, Angela and Annette and others participated. Including me! I had several full bins of "stuff" from a few weeks ago, when Barbara and I purged my closets and organized stuff in the family room. An odd assortment it was, clothing that I have not worn since moving here (old T-shirts, "mom" jeans, some clothing that simply doesn't fit or was kind of worn down, and odd accessories like a lot of the rhinestone jewelry that was such a part of my party-going self in the 80's and early 90's).

So it was all lugged to Betty and Delma's. I set my alarm for 5 AM, got up but moved so slowly that I did not get there until a few minutes after 7 AM when the early bird crowds were already descending! I got my stuff kind of spread out, trying to price things (I am terrible at this part, how do you assign a price to something you paid a lot for, but never use and probably never will?).

One of the funnier items in my "collection" was a bunch of miniature perfume bottles which I had collected for maybe ten years. The perfume reeked, but the bottles were cute. I priced them at $.25 each and they were the first items to go. How many years did I dust those little bottles and re-arrange them on the Waterford tray? This was all pre-kid, and I haven't even had them unpacked for over five years. So letting them go was easy.

I had a lot of those "moments" yesterday, looking at possessions that had been a big deal to me at some point of my life, and now were just stuff, taking up valuable space in my storage-challenged house. T-shirts from events, like Passport, Academy of Friends and the first International AIDS conference I attended in 1998. That sort of thing. All mattered a lot at one time, but I still have the memories and the shirts and clutter really weren't adding anything of value to my life.

I have had a lot of thoughts lately about the disposing of possessions. Things I truly valued or loved, I hope to share with others who might appreciate them, and I would like in some cases to pass them along sooner, rather than later, in my life. Other things have simply ceased to matter so much. I had an unnatural attachment to a pair of very fancy and very expensive high heels that I purchased some time in the late 80's I am guessing. I haven't had them on my feet in over a decade, I don't think. But I moved them across the country for some reason. I tried those on and the effort caused actual pain...could not even get my foot comfortably in the shoe. So that was an easy decision!!!

Things. We want them, we seek them, we buy them and later, we change or grow tired of them. They seem to matter so much in the acquisition stage, but later, they are just "stuff" to pack and unpack. I am not living a simplified hermit life, far from it. But I am happier these days with less clutter, less stuff, surrounded by things that matter. There is still too much clutter in my house, but I am working on it, slowly but surely. Who will I be when I finish shedding it all? Probably the same person, but without the two "designer and collectible" Barbies I have carried around for years, meaning to sell them on e-Bay. And without the jewelry that I never wear, I am still the same person, right?

At the end of the sale period, Kim and Tracey loaded a lot of stuff into Kim's truck and she took it to Goodwill. I tried to be very rigid and did not pack up much of the stuff I brought, donating all the leftover clothing, jewelry, whatevers and keeping only the new in box Barbie, some Waterford items I will give to friends and those darn dishes that I have carried from place to place since 1985. Those are either going on Craig's list or to Replacements.

After all was said and done yesterday, I had about $75.00 in my pockets (much of it in ones and quarters) and I had done a trade with one friend. She needed the old stereo/DVD player for her massage studio, I need the massage! So that one was easy. I cannot bring myself to charge money for stuff for friends, that just seems wrong!

Committed to not re-acquiring, I did pretty well, only getting a few Beanie Baby stuffed animals (4) for Sofie. I spend $1.00 of my earnings. Sofie doesn't need them, of course, but was thrilled to have more creatures for her collections.

If I had more time (who doesn't use that refrain?) I would be scrap booking or organizing photographs from the past five years into a great book for Sofie. This is on the "to do" list for when I am actually on disability or have finished with the idea of going to work. Not now, but hopefully at some point, I will simply shift my focus and do all the little projects I keep thinking of. My stuff is not what I want to leave to my daughter (or anyone, for that matter!). It is the essence of me, my life and experiences, that I want to figure out how to share, preserve and leave for her to have forever.

Yardsaling was tiring, but fun. It is no way to make a living, that is for sure, but it was good to get that stuff gone. I went home, crawled into bed and took a three hour nap.

Midnight Morbidity Madness

Wednesday night, the first night of three that I have to take the steroid pills post chemo, I was tired but wide awake at 11:30 PM. So I came downstairs to the office to check email, or so I told myself. There was not all that much to check, so I did a quick look at the bank accounts (which was a bit depressing, I get paid the first of the month, and do all my bills right away, so the account already looked rather depleted for so early in September). Then for some reason, I decided to Google a bit.

And what did I choose? "Ovarian Cancer Mortality". And so I was off on a journey for about another hour or so, reading depressing statistics about my cancer. One site spelled out something that I had not quite gotten in my head before, that once the cancer is in (or on) the liver, it is considered Stage IV. When I was first diagnosed in March 2006, I was staged post surgery at 1c, only a c because the tumor had "popped" a few days before surgery. So to see that I might now be a four from the recurrence was a bit of a slap in the face! But again, it is not that I don't think about my mortality or that my Duke team has not been upfront about the statistical timeline for my shortened life. It is just that most of the time I don't really think about it, I think about living, living well, not being tired and how to maximize the time with Sofie. (from her perspective, evidently I need to have less rules and play more, which sounds pretty easy when you think about it).

But as the clock approached midnight, I began to really try to absorb all the statistics about how evil and deadly ovarian cancer still is, even with advances in treatments. And I began again to consider the whole quality of life thing, which as you may have noticed, is beginning to be a regular theme here. I went upstairs after midnight, and created a to do list, which included talking to the disability lawyer sooner rather than later, and really creating a plan at work so I can make an earlier exit onto short term disability which is the only option I have there, at least for now, since I have not been there for five years.

I am still in a great place at work due to the generous amounts of share leave I have received. And continue to receive occasionally. I just got two donations, but they were both huge, one for 80 hours from Diane McK who just retired from the library after 20 years and 140 from a doctor that I just recently met and who I look forward to working with this coming year. How amazing is that? So I still have a few hundred hours "banked" which allow me to work less than half time but be paid for full time. This has literally saved me from having to make the disability decision much earlier. I feel blessed by this and determined to leave a bit of a "Debra Kent Legacy" at the Health Sciences Library, even if it is not the million dollar donor I would like it to be.

So with all this mortality thinking on my mind, I slept maybe five hours (probably less) and woke up and drank a lot of coffee to jump start my day. I got to work determined to get through a lot of little stuff, since I had been out essentially three days: labor day and two days for sick leave. Instead, I ended up very spontaneously attending a two hour seminar (being held in our conference room) on "Narrative Medicine". I will wait to blog on that separately,but it just might have been one of those life changing moments in time.

This Is Duke Medicine - NOT!

This is Duke Medicine is a slick advertising campaign the folks at Duke use to promote the wonderfulness of their staff and facilities. I am on a one woman campaign for them to walk the talk.

They should communicate (as in talk) to patients. Actually by patients, I mean me. I agree that many if not most of their staff, especially the professional staff, are very kind, very skilled and generally pretty darn competent and accommodating. But the system, well, that is another story.

Case in point: The "Who's On First" lab incident yesterday.

As I mentioned, I have been taken off the injectable blood thinners and put on Coumadin, a nice little once at bedtime pill. To monitor me for the first month or so, I need to get labs done. And they generally have to be from my arm, not the port, because they flush out the port with heparin, which messes with the results. So yesterday, I knew going in I was to stop at two labs and get two separate draws. Or so I thought. Stopped in at 2C, the hematology clinic where I get seen for the blood issues, and "you are not in the computer" here, but go to 1D, my regular lab. So down I go, and yes, I am scheduled there, but only for the complete blood count I get every Monday. So I tell them the story and they say, you have to deal with 2C, we cannot change this. And no, they cannot page my doctor.

But I am due to chemo treatment, so upstairs I go, check in and then wait the usual one hour delay before entering the room. My nurse, Paula, is great, and I ask her to page the hematologist. She does and has her call my cell to make it all easier.

So then the labs are set up again, we do two, one from the port and one from the arm to compare the values. Just to see the differences.

While hooked up to my tubes, I get a call from 2C stating I should come over at 11:30 and have that blood draw done. I explain I am a bit out of control of when they will disconnect me from the chemo, but that once disconnected, I would come there post-haste. Which I do, but closer to 12:45 PM.

So I check in, port still in because I think they are doing a port draw and an arm draw. I check in at 2C, and there is still confusion about the port, and whether once the blood is drawn, whether they will de-access me, since I did not do that in chemo as I usually do. They tell me that is not their job, that I should go back after the blood draw to chemo and let them do it.

At this point, I am over 1.5 hours later than I thought I would be, tired from the whole drug infusions and pre-medications and I have to go to Costco. So I am a little pissy. Finally a supervisor appears, to "soothe me" and tell me that they will be doing the port draw, even though "we don't usually do this sort of thing". Jeeez. I thought a doctor's order pretty much was the be all, end all there. Then a nice woman, Shauna, comes and takes me back into the lab to draw blood from my port. I complain to her, nothing personal, but doesn't the patient ever get listened to? She is sympathetic and also willing to de-access my port, a very good thing.

Then I get my arm draw done, and wouldn't you know it, a bruise appears within the hour. You would think that in hematology clinic, where people have bleeding disorders, that the techs would be the best and not leave so many bruises. I hardly ever bruise with the lab person at UNC, but sadly, those days are over for my blood letting. But I wear my bruises like badges of honor and survival!

I leave, go to Costco, where I run into two friends, then off to get cat food and then run to Morehead for a meeting with the IEP team. I arrive sweaty (post chemo hot flashes, common but damp) and we have a great beginning of term meeting. It is clear that the folks on the team think Sofie is a great kid, which is so nice for us as parents. Sofie is doing better already this term, the tutoring kept her on point and she is truly a second grader, albeit one with slower reading due to her visual problems most likely. We continue to work on that. This is the year she will learn cursive writing, everyone remember that? I have terrible cursive writing, being a lefty and all (well, that was my excuse for years) and so I went out and got a plastic placemat with the proper style for capital and smaller letters. I truly had forgotten how to do it!!!

Am I smarter than a fifth grader? I should try second grader!! I do pretty well on Jeopardy College Finals Edition, however. Jeopardy is something I love to watch, although at 7 PM I usually am doing other things!

So today, Wednesday, I was going to try to go to work, but awoke with that not so right feeling in my body, plus it is 95 degrees out there again....so much for the beginning of fall weather. That usually is October here, but the days of mid-80's were lovely while they lasted. So I am home, writing, trying to catch up with my life. Having cancer is a big job, lots of clinic and treatment appointments to schedule, meds to track, lawyer appointments, etc. It is at least a half time job. Unpaid of course, but still important.

And since school has started, my Room Parent job is back in force too. I love doing it, a bit of organizing but for her wonderful school, so I enjoy pretty much all of it. Her teachers crack me up, they were talking the other day about being "two fat, middle aged women with hot flashes" and how they used that to get a new air conditioner for their classroom. I guess the Principal was not going to go there with two women with mood swings!!!

I just pull the C-card, when I need to. It works great.

Lazy Holiday Meanderings

It is Labor Day and we are having a slow moving day, I am with Sofie at Jamie's condo and we are attempting to do a pre-yardsale purge of some of her stuff. I haven't actually been here for a while, I had forgotten how nice a space it is. Unfortunately it is on the upper level so on days like today when I feel a bit tired and it hurts (yep, that is back), it is hard to get up those stairs!

We haven't made all that much progress, but we are trying to do what seems to work the best - taking a small "zone" and attempting de-clutter. My friend Barbara did that with me a few weeks ago and we not only did cleaned out my closet but also sorted through a huge pile of accumulated kid hand me downs for Sofie and got them totally organized. The yard sale pile at my house is pretty good and this will add to it.

We are getting along pretty well these days, interesting that we are far better as friends than we were as partners. We have been discussing how important it is to create a mellow and comfortable family dynamic for Sofie to experience, that this will, better than most things, give her an example of how to solve problems, be in a family or a relationship, etc. I really believe that providing a positive model is the best thing. My aunt Susan and Uncle Lew have been together since I don't know, Junior High or something, and they have three sons, all of who appear to be in great (not perfect) but great relationships and have pretty functional families. I know, you cannot tell everything by looking from the outside in, but it is how it feels to me.

Sofie right now seems quite secure in her family, two moms who don't live together, who share her back and forth on the weekends and other nights from time to time and who love her to bits. She is very aware that the rules are different at each house and is quite clear about which are which. Today, on our way over to Jamie's bringing breakfast, she pointed out that since it was "like a weekend" she could eat in the living room and in front of the TV. Which just isn't the case at my more "regulation" house, where the TV is not even in the living room and eating food in front of it is just not the norm. I am so boring, I am sure, with my old fashioned rules about family dinners (or other meals) around an actual table.

Jamie doesn't want to be seen as the lenient parent, but she is probably more laid back, a lesson I could learn, I suppose. How did I get to be this rigid about things, I don't know. I should loosen up a bit, it won't hurt her. As long as we have routine of sorts in the household.

Sofie is watching a "big kid" movie right now, so we are going to use the time well, and finish up another little area....then I have acupuncture later today, perhaps that will help the Vicodin I took a while ago. I am so less able to do stuff if I hurt, so I resent the hell out of it.

Meanderings. That is all that this is about.

September Sunday Morning

Tried to read some of the NY Times, but no time, not really. We have to get going we have a play date at the Museum of Life and Science at noon.

Forgot to mention something small but important the other day: I am finally off the injectable blood thinners! This took over 8 months to get to the point where the doctor said OK to trying the coumadin pill, which is one time at bedtime, easy as pie. I am so happy to stop injecting myself. Not that I wasn't good at it, I was just tired of being a pin cushion.

The temperatures are in the 80's today, lovely. Something about the onset of fall, September, really not quite fall here, but the promise of it all. I love this time of the year. Not so relentlessly hot, not so humid and muggy, and perhaps it might rain soon. A nice thunderstorm would be great.

Sofie ate a hearty breakfast this AM, and is happily watching Scooby Doo while I blog, shower and get out the door. We have a nice day planned, she has not one but two play dates and I might have a few "free" hours in the late afternoon. Oh joy.

A Brief Saturday Morning Blogette

Sofie is playing happily in her room for the past half hour as I check e-mail, banking, the usual. Today is the beginning of a three day weekend, and fortunately, I got it together as of yesterday to organize the time a bit, so that we had a few plans. Today we will have a swim date with Jacob and Emma, at the condo pool, and then do the traditional pilgrimage to Fuddruckers. I am so over that place, but the kids never tire of it, it isn't that expensive, and they have fun.

Tomorrow, we have a date to go to the Museum of Life and Science with Natasha, a little girl that Sofie ran into last week (at Fuddruckers) with who she went to summer day camp this past summer. They exchanged big hugs like long lost friends and chatted as if they were teenagers. The parents introduced ourselves, exchanged cell numbers and said "let's do a playdate". Sometimes this leads to nada, but after seeing how the girls were interacting, I decided to be proactive and called yesterday. Luckily they were free to play on Sunday. Sofie will do that for a few hours, then Jamie will take her to yet another kid's house, so she should be exhausted this night for certain.

Her little social network is expanding, there are few times lately when we are in the grocery store, a family friendly restaurant, the movies that she doesn't run into a kid from school, from one of the camps, from the YMCA or somewhere. Her network is growing, I imagine that in a few years she will be texting these kids all over the place.

My world expands as hers does, and that is good too. But she is clearly in the lead!

Having A Stacy and Clinton Moment

For those of you who don't know, Stacy and Clinton are the hosts of "What Not To Wear", a program my sister is addicted to and that I watch every so often, sometimes when I am feeling down about myself and my appearance, because the folks they feature often have much worse wardrobes and fashion "non-sense" than I do.

This week, I watched the program one time, when I was having trouble falling asleep. The rest of the week, I have been plagued by mirror moments, when I realize how far astray I have gotten in this world of fashion. I don't, I cannot, wear high heeled shoes anymore. I go for comfort over fashion most of the time. My hair is "chemo permed" and often looks a bit wild and unruly. It surprises me every morning about how it will look. It is in charge, I am not. It has been in the 90's until just a few days ago, and trying to dress in clothing for work in this heat is a feat unto itself. So this week, I often wore what has become my summer in NC uniform, of sorts: a skirt (patterned, floral even), a lightweight shell and a matching sweater sometimes (the library's temperature is often set on cryogenically preserve, and it is cold in here). I should simply stop looking in the mirror, I guess. Every time I peeked, intentionally or not, I was sort of horrified. The "girls" as S & C refer to them, were hardly perky. My belly won't change, it is just a soft mass of lumps these days, and I am trying hard to remember good posture, so it doesn't look any worse.

I do have a nice pedicure, that helps, but overall, summer is not being kind to me, in terms of how I look. Or something. I reminded myself that nobody was filming me (which they do on this show, secret cameras record all your fashion faux pas for two weeks, and then they force you to watch yourself).

Sigh, it all seems so trite, doesn't it? I have more important things to worry about, cancer and parenting and working and trying to stay alive. But a part of me, deep down, knows I am supposed to care at least a bit more. Maybe that is why I loved The Devil Wears Prada. That wonderful scene when Andi sort of snickers at the issue between the two belts and is given an acerbic lecture about who makes the fashion decisions for whom and why it is central to their universe (the fashionistas). But after all those years working around the impeccable folks from Macy's with Passport, some of it kind of got under my skin I guess.

I will likely let go of this in a day or three and go back to my central theme of clean, comfortable and able to move around! But just today, I am having my moment. I want to turn myself over to experts who can fix this all. But would it be sustainable?

Answered Prayers

This week has flown by and it has been another one of those weeks that shows me that life is just one big roller coaster ride these days.

For the past few weeks, the pain in the cancer "area", also referred to by me as "the brick" (that solid, hard place around my liver) has been painful. It used to be just when I sneezed or laughed hard, or something, but for a few weeks, about three or four, maybe, I have been living with pretty much constant distress. I talked to my health care team, and they suggested taking a stronger pain med, which for me is usually Vicodin. I don't like being doped up and so I mostly resisted, trying to breathe through it at home, at work, all the time. And I noticed that while I was able to sort of become acclimated to the constancy of it, it distracted me from work, and meant I was happier when resting than in play. Not so good for daily life!

Monday of this week it was truly terrible.... Jamie was over, I begged off for a while to lie down, that seems to help a bit. And while I was in that prone position, I sort of pleaded with (I am not quite sure who. God? Higher power? My secret Santa?) to make it stop. Pain really gets in the way of living fully. Combined with fatigue it was just bringing me down.

On Tuesday, I headed off for chemo again in the morning, something that honestly feels quite routine these days. It was one of those mornings where the chemo area was running over an hour behind, so that meant just hanging out, waiting. The treatment itself went quickly, about 1.5 hours in and out, if that. And then I was a free, if sleepy, woman. I had planned to go home, nap for a few hours, then resume the little bit of what was left of my day.

It was after I woke up from the nap that I realized it. The pain was just gone. I think it had been in the morning too, but I was too much on the "auto pilot" of my morning routine with getting Sofie up, dressed in something that doesn't make me shudder,packing her lunch, eating breakfast, and getting to "before school" care so I could be at chemo by 8:30. So maybe I didn't notice. I thought perhaps the pre-meds they gave me for chemo might be doping me still, but later in the evening, I still was pain free!

And this has continued all week. There is a slight amount of discomfort, but not the relentless pain. I am so grateful. I have so much respect for people who live with chronic pain. I don't consider myself a total wuss, but pain just messes with my day. And I want to continue to make each day count, every single one.

Today, Friday, I am writing this with a cup of hot Peet's coffee (I continue to mail order this as I have for the past three years!). I am not nauseous. I don't hurt. I plan to go to work for a nearly full day and have dinner with a friend this evening. Normal. Kind of.

It is still hot and muggy here, I am wishing (praying?) for rain. The deep soaking kind that will rescue my plants and trees who look so thirsty.

I know people have been keeping me in their prayers for the past year. It is so wonderful when I have the sense that the prayer is actually working. Gratitude....it is the best way I know to face each day.

Spending Alone Time with Myself

This weekend, Jamie had Sofie (Sofie was thrilled, she has been asking and asking for more time at Jamie's). I had time all to myself to do with as I wished. Well, not exactly, I have not yet done taxes for 2006, and I had promised my tax preparer Jean that I would absolutely have everything to her by September 10th. So that was part of the big picture plan. The other was also paper connected: organizing my receipts so I can submit my health care and Sofie's "dependent care" expenses so I can get reimbursed with my money that is taken out each month.

In my previous life (whenever that was), I used to be uber-organized. I had a basket for pretty much everything, it all had a place, etc. In the past year or two, I have just lived in a sea of piles...so the first step was "de-trashing" my office, which I started a few weeks ago. My desk was sorted out, into 2006 and 2007 (figured I would get a jump on the current year too). I had tons of "EOB's" to sort through, arrange in chronological order and add up. And tons of receipts to sort, categorize, etc.

And today, Sunday, I am proud to say I got it done. I was in a bunch of belly pain this weekend, so I would not have been much fun. I slept a lot too, took a nap yesterday, slept early last night,
and then plunged in again this am. And I now have what I need to send to Jean to do taxes, albeit by the October 15th extreme extension deadline, but done!

There is a zen like quality to being alone, I think. I don't always fill my head with all sorts of things, like I do in a busy day. Sometimes, I just focus on the task at hand, slowly, methodically, and there is something so amazing when it is completed, a sense of not just accomplishment, but relief.

Beth called on Saturday (twice, actually) to check in. And as much as I wanted to see her and spend some time, I also wanted to keep plodding away, until I had made more of a dent. So I declined. And I ended up feeling tired by about 7 and getting into bed shortly after. I talked to a few folks on the phone during the day, but otherwise, I was alone.

Bit by bit, I am sorting through a ton of paperwork that has surrounded me in this office and in my life for a lot of years. And gently this time, I am being able to shed it, to let go, of most of the papers. The tokens of my work, the tokens of who I have been for so many years. It is positive and it is freeing in a lot of ways. And the office is beginning to be an actual room, not a dumping ground!

Tomorrow I am going to the lab, then off to work. I am planning to do work at least most of the upcoming week, but not full days, so that I can pick Sofie up and spend time with her without being exhausted. Tuesday is chemo, so that day is shot anyway.

She had a great weekend with Jamie, (see Jamie's blog) and came back here to play about mid afternoon.

Tomorrow is the first day of school and I have to go upstairs to get her on the track to getting ready for bed. She is not all that thrilled with going back to school, although she is excited to see friends and loves her teachers.

I just wanted to comment on the wonder, the awe, of being solo sometimes. Not lonely, just alone. I know you are all out there. And that gives me solace a lot of the time.

15 Hours Later

So, last night the mood was pragmatism and all reality and probably sounded sad and discouraging. I have received a bunch of emails from friends and family who all sounded sad. And I was, for certain. But then another day dawned.

And I got up and went to work, attending a lively meeting of the Library Management Council, (LMC) with interesting updates. And when I am at work, I feel renewed a bit, and want to be there. I want to contribute more, but overall, I want to keep working a while more, until I figure out how to leave at least a little mark that I was ever here.

I had a good and honest meeting (weekly type) with my boss later this same day. I am a fortunate person and we kept working at what *can* I do. And she came up with capacity building (for the Library) in terms of re-building the Board, keeping on with established relationships and trying to get us to the next level. Those words, capacity building, lit a little spark in me. It is what I used to do in my consultant role for other organizations, it is what I was good at, and perhaps it is what I can do here to help me move forward, help the Library in a positive way and leave a little Debra legacy.

It is important to me that I do that, leave a little of myself here. I have come to really like this place, it has been so good to me and when I come here and do some work, I feel more alive than the previous blog would have you believe.

So this is just a little update for right this moment, to let ya'll know that I am still OK. Hang in with me, folks, it is going to be a bumpy ride, I am sure, but there is still plenty of ride left!

A More Somber Update - And Reader Advisement

First of all, the reader advisement: when I write these honest blogs about what is going on, it still doesn't mean I am on my deathbed. I don't have that "cancer patient look, all sucked in cheeks, ashen color or skin and bones. Not hardly. I don't even look sick these days, or so most people tell me. My color is good, I have hardly lost much weight, I am not walking around with that queasy look and except for my energy waning so much more quickly over the day, I look kind of "normal". Whatever that is for me. Oh, and my hair continues with its "chemo perm" all curly and wild. Especially assisted by the humidity that continues to plague my state.

But the news here is not so great. I went in to clinic on Tuesday this week and my numbers, the CA-125, had climbed - a lot. Into the high 300's again, and it was under 100 in mid-June. Not good news. The Gemzar evidently had been working, but just stopped. I have done one cycle of this new drug (Topotecan), which is three consecutive treatments, then one week off. Tuesday I started cycle 2, and I hope with another cycle the numbers start going down again. This time, they added Avastin (made right there in the Bay at Genentech). This is given and clinically tried with lung and colon cancer, is not yet even on the website for Ovarian but evidently has shown some success in earlier stage trials. So I am going to try this too, hoping it will "boost" the effects of the Topotecan.

If you Google any of these drugs you will see in clear print, what is up with them. Especially the Avastin site, where it is described as shown to "prolong life". Not cure, not put into remission, just add time. If you read more, you will see that there are some scary side effects, too, like bowel perforation. I will very mindful of any changes and zip myself to the ER at any sign of pain in the gut!

That is the tough and scary part of what is going on now. The drugs don't seem to be working, the tumor is growing (I can feel it being larger) and it hurts. Not worst pain in the world hurt, but it makes its presence known on a pretty much daily basis, reminding me that it is there.

And so I am facing some tough and challenging choices. I asked my doctor the other day, what would he say about the idea of being on medical disability and he said "if I were you, I would be on it already". He knows my situation of being a parent of a young child (he has met Sofie) and he said, if it were just me and work, and that were it, then maybe I could push through, but being a parent is my number one concern. That, and having enough resources to take care of her while I am alive. I could get short term disability from work, but that is fifty percent of my salary, so I would have to supplement (from my not to be needed retirement fund, not huge, but OK for short term) and then Cobra my insurance, which is expensive. That would last for a year, then unfortunately, the State doesn't qualify me for long term disability until I have five years of "service" and I would be short by 1.5 years. And probably in no shape to come back to work anyway.

So, I struggle with all this. I don't want to spend time at work, I have trouble focusing when I am there, there is so much else on my mine. But work has been so wonderful to me, and I feel so badly that after all this support, since January of this year, nearly 8 months, I would just leave them. So I can stretch the share leave out more, and work 16-20 hours a week, at most. Until I just can't. I wish the long term disability picture were better, if I had read the fine print when I took the job (but who does on that sort of thing) I would have bought private long term disability for the first five years, as extra coverage. At least I have a good life insurance plan for Sofie. But I will lose all the work life insurance after I leave. It all makes no sense, is hard to figure out and I am trying hard to listen to my heart and not just the voices in my pragmatic head, which are all about being responsible, with a bit of Jewish guilt thrown in for good measure.

I am tired all the time and really afraid that working even sixteen to twenty hours a week, will compromise my ability to parent Sofie as well as I want to. Jamie is pitching in a lot of evenings so I can take it slower, but I miss doing things myself and I know tiredness can make me shorter tempered or cranky, and I don’t want that. I wanna be the fun mom too. But Sofie has already informed me I am not much fun anymore and is also asking to spend more time with Jamie. I know she is taking care of herself, she knows a lot about what is going on, whether she opens up to me and talks about it or not. But it hurts. Tonight when I read to her and then we did our little song, I just stroked her shoulders and hair, I love that child so much it hurts. I cannot imagine sometimes that I won't get to see her grow up, as challenging as I know her pre-teen and teen years will be. But she is so little, I have had only five years with her and it isn't fair. I waited all my life (or so it seems) to be a mom and now, I worry that I will leave her and break her heart. And then I worry that she will forget me. I know she loves Jamie and that although I know it won't be easy, they will be OK, but I want to be in on all this growing up stuff.

I have to stop now, I am getting teary. I continue to be hopeful that this new drug combo will buy me more time, maybe even put me into some sort of slowdown on the growth of this cancer. I hope so.

Stuff

A lazy, slow Saturday morning. A rare occurrence, really, in my life. Sofie is still at camp until tomorrow. My friend Barbara is on her way to visit me, but won't be here for a couple of hours. So I slept late (nearly 8 AM, trust me, late by my standards). And now, with a cup of coffee nearby, I have been just doing a bit of stuff on the computer, and thinking about all the things I have to do here at home, in this last day of "freedom".

It has been interesting, I miss Sofie, but not in a terrible way, and I have loved having unlimited time to myself. I have craved it actually. Unfortunately, a lot of the time has been used for sleep, but even with that, I have enjoyed having time to putter in my house, not really have a directed purpose, other than the constant attempts to try to be more organized. But it has been mellow and good.

I have been going through "stuff" of all kinds, the other day it was a box of jewelry I haven't worn in years. Why is it that something seems to be so very appealing in the buying process and years later is all but forgotten or somehow just not right anymore? So I have decided to re-purpose some of my stuff to other people before I am not around to make those choices. I started with a pair of earrings I got some time in the mid-1980's I think....beautiful dangling earrings in purple with gold moons and stars. I loved them so much I spent much more than I should have at the time. They are still lovely but somehow just not me anymore. But they had a work colleague's name written all over them. So, not knowing if she would find it weird or not, I gave them to her yesterday. She loved them, they look totally perfect on her and I was so happy to have found them a good home.

This is something I think I need to do more of, passing things along or simply shedding them. Not only for the physical clutter they can cause, but also because I am understanding more deeply than I have ever before, my stuff is not who I am. Not the papers I have have saved of my work product, not the clothing I barely wear anymore, not any of that. My stuff is just stuff.

I got rid of a lot of stuff, or so I thought, when I moved to NC. But somehow, what I brought and what I have acquired still spills over and overwhelms me. So more de-cluttering is in order.

Barbara has said she will help me today, and working with a friend might make some of this easier to do. Sometimes I get a little mushy and find it hard to let go. Cards, little notes, things like that.

It doesn't mean I have gone all non materialistic, but these days, the treasures I care most about are the human ones.

Life, Revealed

Today I am home, having done all of two days at work. I get so exhausted there, and no matter how much I sleep (and I have been getting in excess of seven hours a night), I am tired and I hurt. So today was a planned day off, tomorrow there is a big retirement party at the Library for one of my most favorite colleagues, and I want to be able to participate.

So today, I took on a project: trying to dig out my home office, which has been a mess pretty much since I moved into it in June 2004. I moved boxes of "stuff", work product from my consulting days, samples of things I have written, letters, etc. Not to mention several boxes of memorabilia, a nice name for the stuff of our past lives. Today, I was determined to fill up some of those huge black sturdy bags, the kind people use when they mean business.

Some of it has been pretty easy, old brochures, booklets, lots of materials I picked up here and there, on HIV and other topics, that have been kind of dormant in my life here. And most of the information is online, with better and more current statistics, should I need them.

Then I unearthed a box of personal stuff: a journal, half filled, from 1987-1988, so those of you who remember me then can only imagine the contents of this journal! It was an interesting read, I tended to write only when in angst mode, so it is full of self-questioning, painful feelings of love not quite returned, etc. You know, the usual.

Then I found them: letters from the various women I was dating in that time period. Or whatever you would call what we were doing. These were fun to read and then, without a minute of regret, tear up and shove into the large plastic bags. I did find some from a young woman I had simply forgotten I had corresponded with. She poured our her heart, sending me poetry, long letters (remember, this was before email and blogs). I am assuming I wrote similar ones to her. I can only hope she has lost or destroyed them. But they were a little diversion in this project and then, like pretty much all the years of thank you and birthday cards I had saved, I purged them too.

That part of my life seems so long ago. OK, it was that long ago, about 20 years and I was a 30-something woman with no child to care for. And evidently a lot of time on my hands for fun stuff. It was nice to read the letters, remember that time in my life and move on.

This project will hardly be done today, but I did make a significant dent in it. The ultimate goal was to organize materials for taxes for both last year (yes, I have an extension) and for 2007. With all the medical bills I have, I need to be better organized to submit information for taxes. Doing it this way is too hard. So I am attempting to rectify a bad situation and make it better for the future as well.

I do have to leave the house at some point to go to Costco before the masses do. I have a couple of things, including something for work tomorrow, to pick up. So in a few hours I will get out of here for a bit and get there.

Cannot believe tomorrow is Friday, this week has simply slipped away.

B O R I N G

My life. I am so tired of being tired. I know that is not an original thought, but it suits my mood.

I went to work yesterday but was uncomfortable most of the day and exhausted before 2 PM. Jamie and I went out for a child free dinner, which should have been more fun, but I was so tired that I didn't even have much appetite for the (delicious) pasta dish I had ordered. And those of you who know me know that my appetite generally stays intact.

We were home a little after 8 PM, and all I could do was go to bed. I have things all over the house screaming at me "organize", "clean me" etc. But I can't. I am just weary. I tried again to read a bit more of this weekend's NY Times, but I didn't last long. Mostly I just need to sleep.

I hate this. I feel like a prisoner in my body. I have a list of "projects" none of which are all that impressive, but I have to work on them, my house feels cluttered and there is stuff that needs to be dealt with. But it is all I can do in the afternoon/evenings to read or watch something I actually like. Then crash again.

I hope the medications (Procrit) they are giving me will help, I really need them to. I cannot imagine living like this for sustained periods of time. Sofie told me I was no fun anymore and I am beginning to agree with her.

Speaking of Sofie, click on the LINK to Jamie's blog (left side of my page) to see cute photo of Sofie and her counselor.

Big Girl Stuff

Yesterday morning, we drove Sofie to Camp Kesem, about 1.5 hours from here, for her first ever week of sleep away camp. Camp Kesem is a special camp for kids who have a parent (or in her case, parents) with cancer. It is run by folks from Duke and UNC and is free to families. The purpose is to give families a break and to provide a supportive place for the kids.

We prepped Sofie for this for weeks, discussing it and talking about ways she could cope if she was a little sad or missed us. I think it might have worked. I welled up with tears as we pulled into the parking lot. She was fine, excited. She had an arsenal of supportive objects packed up: Licky, the favored pink snake of the trio, three cats (stuffed) and of course, Yang Yang, her blankie. I talked in advance with the counselors at Camp, they assured me that most kids brought at least one safety object (like the blanket) and that she would not be teased, which was her big fear. It is interesting to watch Sofie become aware of the outside world and the possibility of being teased for sucking her thumb or having her blanket. We assured her she would not be alone!

The ratio at her age group (6-8) was one counselor to three kids, which sounded perfect for a first time camper. We met "Bean" her counselor who looked about twelve to me, but I am sure was a bit older. And then, after her things were taken to her cabin by the staff, she simply kissed us goodbye and left happily with Bean. That was it. So we did good preparation (assisted a lot by her wonderful therapist Jane) or Sofie truly is the independent little soul I think she is. She was able to articulate that AM that sometimes in new situations she feels shy and we talked about that, but essentially, her little social skills are such that she is OK in new situations, after a bit of adjustment time. I raised her that way, I guess. And I am proud of her, I really am. She just turned seven and she really does have a good sense of who she is.

So I now have a week sans child! What to do, what to do. I am so behind on so many things due to exhaustion (I simply poop out by 9 PM and that leaves little or no time to do anything much, not that I had tons of time on my hands prior to having chemo either!). I have to pull things together for taxes, as the extension is "only" until October. Mostly this means going through tons of medical receipts to see how much out of pocket I really did do. I started this process and was quite staggered by it! Prescriptions alone really add up, some have co-pays of $25 or $50 for the really big drugs, like the Lovenox. So in a month, several hundred dollars of co-pays are just out the door.

I want to mention how grateful I am for the Friends of Debra fund. It is (still) hard for me to need or to ask for help, but I am so glad that fund is there. Not just for the medical stuff, but all the times we do take out because Mommy is too tired to think about dinner! Sofie is getting kind of spoiled on the restaurant food thing, and I know in the fall we will go back to more meals at home after school, more normal, but this summer has been a bit out of the usual. Especially now, when I am so tired all the time.

Sofie told me last week that I wasn't much of a fun Mom anymore, "You never do any fun things anymore", to be precise. We talked a bit out how the treatments make me so tired. "I wish you did not have to have those treatments" she said. Me too. I would love to be more peppy and be able to keep up with my seven year old! But I can barely keep up with me.

Jamie has been here a lot, as back up and sometimes I simply have to crash and sleep. Yesterday after dropping Sofie off, I went to the lab for the weekly blood letting and then came home, crawled into bed and crashed for three hours. I woke to eat a bowl of cereal for dinner (something that I just don't do when I am being the parent), and then kind of just hung out for a few more hours before dropping off to sleep again. I awoke this AM, not quite rested, but determined to try to make a "normal" day of it and go to work. So off to the showers with me.