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.
Sunday, September 30, 2007
Thursday, September 27, 2007
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.
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.
Wednesday, September 26, 2007
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!
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!
Wednesday, September 19, 2007
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!!
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!!
Tuesday, September 18, 2007
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.
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, September 10, 2007
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.
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.
Sunday, September 09, 2007
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.
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.
Friday, September 07, 2007
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.
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.
Wednesday, September 05, 2007
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.
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.
Monday, September 03, 2007
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.
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.
Sunday, September 02, 2007
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.
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.
Saturday, September 01, 2007
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!
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!
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