Wednesday, March 05, 2008
Please gather with us to celebrate the incredible Debra Kent (and please feel free to forward this information with others):
Sunday, March 30th
National AIDS Memorial Grove (“the Grove”)
Golden Gate Park
San Francisco, CA
Contemplation and Meditation from 10:00 am
Program promptly at 11:00 am
Reception in the Grove to follow
HOW YOU CAN HELP:
The inimitable Kile Ozier is responsible for the format of this event and has asked that if any of you might be able to help with the following resources and talented individuals he seeks for this special moment at the Grove, please let him know directly at firstname.lastname@example.org:
(a) donated/discounted florist/flower source
(b) pro bono musicians: strings, winds, percussion and soloists, duos, trios
(c) donated/discounted rentals such as chairs, tables, linens, a tent
A LASTING MEMORIAL FOR DEBRA:
The National AIDS Memorial Grove was close to Debra’s heart; it’s a beautiful space for solace and remembrance of many friends and family who we’ve lost over the years. Debra specifically requested that her memorial be held here, if possible. Many thanks to all the people who are helping to make it possible!
In honor of the many contributions made by Debra in her short life time, we are working with the Grove to install/inscribe something meaningful and lovely for all of us – and especially for her daughter Sofie - to visit and remember her for years to come. We are still working out the details with our friends at the Grove as to what exactly this will look like, but, in the meantime, we ask you to join us in contributing towards this installation/inscription with a donation to the National AIDS Memorial Grove in memory of Debra. We hope to announce more details about this at the celebration on March 30th.
Donations can be made payable to the National AIDS Memorial Grove and sent directly to them at:
P.O. Box 2270
San Francisco, CA 94126-2270
PLEASE include a note with your donation that your gift is in memory of Debra Kent, so it gets credited to this campaign.
If you prefer to make a gift online, please go to www.aidsmemorial.org and click on the “DONATE NOW” button on the right hand side of your screen. You’ll be taken to a secure donation portal via groundspring.org, and there is a space to note that your gift is in memory of Debra.
DIRECTIONS AND PARKING INFO:
PLEASE NOTE: JFK Drive in Golden Gate Park is closed to automobile traffic on Sundays. However, there are several other ways to get to the Grove; please visit their website here http://www.aidsmemorial.org/getting.html for more information (click on the “Getting to the Grove” option on the left for more info depending on your mode of transportation). There’s a pretty good map of Golden Gate Park here: http://www.sfgate.com/traveler/acrobat/maps/1999/ggparkmap.pdf - the AIDS Memorial Grove is #27 on this map, and the street names where the Grove intersects are Bowling Green and Middle Drive East (right across from the tennis courts).
There is free street parking in Golden Gate Park ; however, with JFK Drive closed, these spots may fill up early. Another suggestion is the parking lot at the M.H. de Young Memorial Museum, which is open to the public and not too far away from the Grove – please see #21 on the Golden Gate Park map referred to above. Here’s more details on that lot (from the de Young’s website):
Concourse Parking Facility: Parking for cars and bicycles is available in the Concourse parking facility. Access to the north entrance is from Fulton Street at 10th Avenue . Access to the south entrance is at Concourse Drive and Martin Luther King Drive inside the park. The Concourse parking facility is open seven days a week year-round and parking in the garage is encouraged.
Hours and rates: Weekends 7:30 a.m.–10 p.m. ($3.00/hour)
For more info please visit: http://www.famsf.org/deyoung/visiting/subpage.asp?subpagekey=575
Thanks to everyone for your caring and support of Debra over these heartbreaking few years. We hope to see many of you in person on March 30th.
Brenda (and Kile and Kerry E.)
Thursday, January 03, 2008
Cross posted from The Complex One's Musings.
Saturday, December 29, 2007
Thursday, December 27, 2007
Friday, December 21, 2007
The Winter Solstice is often associated with death and rebirth. How very appropriate that Debra exited this world to be reborn into another this very morning.
She was being held energetically by so many of you and I'm certain that made the transition to a pain free and loving place so much easier for her.
Be assured that her death was painless and a beautiful relief. Her mother and other friends were with her at the time of her death. Sofie and I sat with her after her death, told her we loved her and we will miss her very much. Sofie said that she's becoming an angel right now. We cried and kissed her goodbye.
A local memorial will be in January and the San Francisco memorial will be in the Spring. Details to follow for both.
Sofie and I are a bit overwhelmed right now so we're taking time to ourselves by staying at my condo tonight. We both appreciate all the love and kind thoughts that are pouring our way. We love each and everyone of you and are glad you've been part of this part of our journey.
Tennyson said it best,
I hold it true, whate'er befall;I think we were all very lucky to have loved and been loved by Debra.
I feel it when I sorrow most;
'Tis better to have loved and lost
Than never to have loved at all.
Crossposted from The Complex One's Musings
Saturday, December 15, 2007
So, I have a hospital bed, a tank of O2 and we are attempting to find positions that feel somewhat comfortable. The tumors are not helping. They are sore and painful and get in the way of sleep. Plus I am trying hard to drink a lot of fluids to avoid re hospitalization and trying to stay hydrated.
Todays plan includes a visit from a work friend to go through my closet and "shop". I would love her to have some of my winter jackets and things. So I hope things fit.
S-L-O-W. I have had to crank it down a lot. I don't have energy to spare, even when I sleep for hours. And sleep I do, although frequently interrupted. But I am trying to do all the things I am supposed to do.
Oh, and the cat is now out of the bag.....a group of you (unknown to me, but headed up by Rick Crane) sent the cutest Dell laptop, which should make blogging easier, as soon as I get more adept on the laptop....I have always resisted....I am an old fart, I guess.
Must go. MUCH LOVE TO ALL OF YOU.
Sunday, December 09, 2007
Debra, Sofie, Gracie 2 and Pounce
December 09, 20007
The Waiting Game
So as you can see from the picture, I’m in the hospital. I have been here since Thursday, and I apologize for the really bad hair. It’s kind of funny when you go into the ER. Kind of like when you go to the car repair shop. I thought I was coming in for dehydration and exhaustion. (I’ve been sleeping about 75% of each day and really unable to get much in, even liquids.) Come to discover, I also have fluid on my lungs, and a raging bladder infection due to the dehydration.
Those of you who will recall my last ER experience, which was something like 9 hours in hell, will be pleased to know that following extensive renovations, Duke now has an efficient and comfortable waiting room set up. I spent 8 hours in the ER, was seen by great people, and didn’t mind the wait at all. I was absolutely grateful when the resident suggested that I check in for a couple of days. Truth be told, it’s been terrifying at home. I keep wondering if I’d be lying in bed some morning, unconscious, and Sofie would find me that way. And I really can’t take care of myself anyway. So, I was absolutely delighted to be checked in as a guest of Duke.
Of course, there are tradeoffs. When you first come in, vital signs are done every four hours, which is probably good, but they’re usually introduced with a tap on the door and the clanking of a cart which, if you were sleeping, rattles you to your bones and wakes you up. On this particular first night, at one point shortly before 11 o’clock, the door flew open, the lights were flipped on full power, and there stood Agnes, in bright red scrubs. She just wanted to introduce herself as my nurse. There wasn’t anything in particular for her to do, as it wasn’t time for my vitals yet, she just wanted to say hi. (!) She actually turned out to be terrific, very accommodating, and quite unlike the nurse I had the next day, who, whenever I asked a question, seemed to get more and more guarded with me, as if I were questioning her very ability to be a nurse, which I wasn’t; I just like to know stuff.
So the days have gone by, with various fluids dripping into my port, to hydrate me, and with me making feeble attempts to eat small amounts of food and drink small amounts of liquids so I can stop the IV fluids. So far we’ve stopped and restarted the IV fluids three times. Food is absolutely unappealing. This AM I made myself eat scrambled eggs for the protein, but only after staring them down for two hours, so they were congealed AND cold by the time I put them in my mouth. It’s not that I’m nauseous; it’s just that food just doesn’t appeal at all, and I feel full all the time.
People have been great, calling to say hi and send their love. It’s hard to talk most of the time because I’m short of breath, which is another thing that scares me, because of the past history of emboli. But I feel good, and I’m being watched over so carefully, and in fact, I have permission to just not take care of myself, much less anybody else.
Joanna Lee and her daughter Naomi, one of Sofie’s earliest friends from California, had made plans to visit this weekend, about two months ago. Little did we know that I would barely see Joanna and that the visit, of course, would turn into a child-centric weekend. (High School Musical on Ice and a birthday party at a climbing gym.) Joanna is in fact being the scribe because I know, faithful readers, that if three or four days go by without my blogging, people think the worst.
So now that I’ve said the words, let’s talk briefly about the worst. There are still a lot of unanswered questions. The bone-crushing fatigue that I’ve been experiencing is quite likely to be associated with the amount of radiation I had. The loss of appetite, less so. The cancer is spreading, without a doubt. I don’t even need a CT to tell me; I can feel it. So now we are in a waiting game. Jamie is focusing her energy on Sofie, which is as it should be. Sofie’s definitely feeling the stress more, and I know that my being away and so sick is really hard on her. I’ve contacted hospice, because I know it’s time to start looking down that path, and I’ll select a treatment team within the next couple of days. Various friends are making plans to be part of the care team over the next couple of months. I know many people have wondered if they can come, but I’m trying to pace this whole thing, and there are still so many unknowns. For now, Brenda Laribee is the official keeper of the schedule, and point of entry for all guest inquiries. I truly hope that I’ll get some of my energy back and that I’ll have a few more months than I feel like I have right now. Today was just one of those days. Try as I might, I couldn’t get myself to feel better for more than half an hour at a time. So it’s a waiting game, and I’ll try to keep you all posted. --posted by Jamie on 12/09/07
Wednesday, December 05, 2007
Saturday, December 01, 2007
If this is going to resolve in three to four weeks, (post radiation, which was over the 20th), then I guess I can manage it. Somehow. But I am so fearful that this is *it* and it won't improve. I cannot live like this. I have nothing, no energy, no appetite, no interest in things. This cannot be it. And it is only December. I had plans for the upcoming year, nothing fancy, mind you, but plans. And I want more time, not just time in bed, but time to visit with friends, write letters to Sofie for when she is 16 or 21 or graduating from college. Time.
My dear friend Susan has been visiting from CA the past few days, waiting on me hand and foot. And doing something that I had not realized how profoundly I was missing it: Offering touch. An arm to hold on to, a shoulder to cry on, a pat on the back (or two) and that sort of thing.
Touch is an amazing thing. It can convey love, lust, comfort, tenderness, anger, all sorts of things. But touch is critical to being human, isn't it? I miss it. Without a partner, I am of course, not expecting "that" sort of touch. And frankly, not sure I would welcome that in any case. But tenderness, comfort, that sort of non sexual touching, is so important, and has truly been missing in my life.
Massage helps in a way. It offers skin to skin contact, in a soothing way that relaxes and comforts. But it isn't the same thing as what Susan has been offering for the past couple of days. I will sure miss her when she is gone!
Jamie is outside, putting up some lights on our house. As some of you might remember, I relented last year when Sofie really wanted Christmas lights. And I lived through that, so this year, it was simply a given that the lights would go back up. And I have found a place of comfort with this. I know deep in my soul that I am a Jew, but Sofie is not and it is OK for her to delight in Christmas. And Jamie will be her parent for a good part of her childhood and growing up, so it should be something they can share and delight in together. It is all about creating celebration, anyway.
So back to the fear factor. I find myself wondering as I am in bed, is this "it"??? Is it going to be like this until I die? Weak, unable to do for myself, all that? The blood transfusions I had yesterday didn't perk me up as they have in the past. Is that because I am too far gone?? Or is this simply the post radiation fatigue combined with the tail end of a four week cold? The snot tells me the cold is still with me. So what is it? I might have to wait it out a bit to find out. Stay tuned.
A big shout-out to my sister in law and brother and their three great kids for making this a wonderful Thanksgiving, despite the fatigue. Sofie had a total blast and I had a couple of good days. Cannot complain!!
Fatigue like this just sucks. I was told to expect about four weeks of it, post radiation, but it totally sucks. I cannot parent, I lose all appetite, I don't even drink enough. Bed is the only thing that matters. I hate it and I hate that I need so much help, but I do.
More later, I can see where this is going and it ain't pretty!
Thursday, November 22, 2007
Sofie and I are staying nearby in a Comfort Inn, which is great, because it has a pool for my daughter the fish. Today, we managed to sleep in until 8 AM, then took about an hour to get ready and then hit the breakfast area. My appetite is coming back slowly, so I was brave and ventured into the world of a cup of coffee this AM, without major incident. Yay! Sofie ate the biggest breakfast I have ever seen her consume, a waffle, one pancake, two sausage patties, bacon, cheese, some melon and a hot chocolate. I was truly impressed. Then, at her suggestion, we "explored" the hotel (we have been here once before). We sat for a while in front of the lovely fireplace and just talked, something I realized that we don't really do as much as I would like in the busy regular day to day world, full of rushing here and there, comings and goings. We talked about animals and how she knows a lot about them and wants to learn more. And just stuff. It was lovely. We then continued until we found the swimming pool. There were a couple of little girls in there, and Sofie clearly wanted to join them, so we ran upstairs to change her into a swimming suit. She played for about an hour in there, mostly in the hot tub. But it was lovely to watch, with light snow flurries visible from the outside windows.
We are not doing anything fancy this year and that is just exactly how I needed and wanted it to be. Just pure family time. I just finished a Monopoly game with Vik, Jackie, my brother David and Sofie observing (she has never played it before). I was the first to go bankrupt, but that was fine. David kept me entertained with statistics on what was the most frequently rolled number and what the benefits of what properties on which areas were. I had a blast playing, it was really fun. Good, old fashioned family time.
Despite the past few weeks of discomfort, and the year of growing surreality, I feel that I have much to be thankful for this year. Family and friends, love beyond measure, and just knowing that life, itself, it a daily blessing and not to be taken lightly. And I am so grateful for my beautiful daughter, who delights me and makes me cry with joy sometimes. I watch her interacting, listen to her words and know that even though I cannot bear the idea that I will not see her grow up, that she will be fine. And I have Jamie to thank for that, in a big way. Taking on single parenthood, when it was not something she signed up for, is a big deal. A really big deal. But she is embracing it with grace, enthusiasm and love. Lots and lots of love. And that is really all that matters.
Family is all about love.
Tuesday, November 20, 2007
Even when sometimes disappointed by someone, I haven't really wavered in my belief in the goodness of people. That they are really wanting to help.
And so, a short list of recent thank yous, and I hope I don't leave anyone out.
To Jamie, for being there in so many ways and especially for being such a great mom to Sofie and making her feel safe in this chaotic world she is living in,
To Maria and Mohini, for sending fancy chocolates for Halloween,
To Betty and Delma, for bringing dinners and doing the baths and the spelling practices,
To CJ for showing up during some of my worst days with this cold and taking such good care of me, body and soul,
To Annie S, who is going through her own grief, for the beautiful and thoughtful card,
To Amy, for always writing the perfect and supportive emails from far away. We wish you were all closer to us,
To Jamie B for offering her home and her kids for playdates so gently and gracefully,
To Brenda, for entertaining me with current information and lively feedback from the front,
To Pammy for her offer to defend my honor,
To the Covenant Group at ERUUF who raked up 18 bags of leaves and made my yard look a little more managed than it had been,
To my neighbors for the weekly trash assistance and for the emergency dinners,
To Tracey for the evening rescue when I couldn't move a muscle, much less run a bath,
To Kim for the awesome massage,
To Kile, for calling to say I love you just whenever,
To Katy M, for sending 2 lbs of See's chocolates at a time when nausea ruled,
To Jean E for the little bag of luscious smelling lotions and potions,
To my HSL colleagues for the incredible spa basket of treats and toys and for thinking of Sofie in their gift-giving,
To Dave, Susan, and Joanna who are coming to visit soon,
To Jane R for taking good care of Sofie's little psyche,
To Ms. Kelly and Ms. Ewald for being her warm and wonderful teachers,
And to everyone who has called, sent a card, an email or a note to cheer me up. It helps, really it does.
Happy Thanksgiving everyone. With love.
I have gotten lots of sweet emails and a few cards this past week, all of which contributed to my feeling better. And were encouraging, vis a vis the previous post. Today is the last day of my radiation treatments, and Dr. Jones, the radiation oncologist, tells me that the fatigue from this will likely last a month, possibly more. The treatments were only three weeks, so that seems extreme,but it is what it is. Hopefully the cold is on the way out of my body, having lived here about two weeks it seems. So I can begin to sort things out and figure out what "normal" feels like again!
Sofie had a great weekend with Jamie which was terrific. All I did was sleep. I made up the packing list for the Chicago trip, but didn't actually put things into suitcases until yesterday, when I started with the non clothing items I am lugging there. Trains, toys. Things for the nephew that Sofie has outgrown. Usually I send large boxes and I am sure I will again, but this seems like a good way to get a bunch of stuff there in a large suitcase, since we get to have two checked bags each. And we won't be needing that much.
The weather is warming up a bit here, in fact, yesterday, Sofie and I had a good fifteen minute argument about wearing shorts to school. I finally gave up and told her she could wear them but could not utter the words "I am cold" no matter what. So off to school in shorts she went. Her class had a "fall tasting" yesterday, sort of a little buffet Thanksgiving feast, the room parents like me helped to organize and serve the kids (which about wiped me out for the day) and it was great fun. Sofie, ever the little helper girl, stayed after while her classmates were at recess, to help me wash off tables. Gotta love my girl.
So today, I will move slowly but hopefully efficiently into packing mode. After I take her to school, I will get out the list, wash the clothes that need washing and get the packing done. I have to be especially careful to pack all my meds, in their original bottles. And that is a lot of stuff! I should have room for a book too, hopefully. But I have to make sure I have all the meds, including the shots, packed with the prescriptions lest anyone think I plan to do something evil on the plane. As if. I am glad this is a pretty quick flight, one plane only. I cannot imagine the hell it would be to fly across the country on the Wednesday prior to Thanksgiving. So think positive thoughts for us, that I can get out the door before 6 AM tomorrow, get on the plane and get there more or less on time. After that, it should be five days of fun with the cousins, the family and the cold Chicago weather.
Happy Holidays to all. Not sure when I will write again, hopefully while I am in Chicago, but enjoy the holidays, however you are spending them.
Saturday, November 17, 2007
The other thing I am aware of is how limited my world feels right now. I am trying to read but often am too groggy to make sense of the words. I have finally given up getting the NY Times for now, because I was finding that I was not reading enough of it before the next issue. It is as if my brain is turning to mush sometimes.
And I guess I am spending too much time worrying. About the future, the time I have left, what will happen to my family, all that. When will I have time and energy to clean out that closet? (this is one of those projects my visiting friends will be able to assist with over the upcoming weeks). I still have lots of legal paperwork to move through and get going on. I am trying to make decisions about my will and to feel like I am doing the right thing. Time seems to be slipping by, measured in how many episodes of Jeopardy did I see this week. So yes, I guess I am in a place of intense self-absorption. I don't want to be stuck here but my world seems to have gotten so much smaller in the past month or so.
I am familiar with symptoms of clinical depression: loss of interest in the familiar things of one's life, withdrawal from friends, etc. I don't think it is that, not exactly. There is a difference between lack of energy for something and lack of interest. But for example, I realized recently that I cannot handle movies with dark deep plots, or serious themes right now. I am more interested in light comedies, ones that don't tax my brain too much. So I am going to miss out on a slew of recent films that have deep meaning, but I have to go where I can go. My Netflix membership is on "hold" for now, and Jamie is passing the light comedies to me for watching. And I am still trying to complete reading Eat, Pray, Love, which I really enjoy, but find myself just wandering from as I try to read it in long chunks. Reading has always been a joy and a comfort, so I don't want to lose that!
So much of what was "normal" in my life just a month or so ago, feels compromised or changed. I cannot bear to drink coffee right now, and I love coffee. But the smell and I aren't getting along, so I have switched to tea for the time being.
I was looking forward to going to a lot of Duke Women's basketball games this season. Hopefully once this cold has passed through me and I am really done, I will have the energy to think about that again. I loved going last year and there are some hot games coming up. I just need to have the energy in my body to be able to be there and stay awake!
Self-absorption is boring. I don't know how to answer simple questions like "what's new?". Nothing is much new, unless you want to hear about the changes in my head congestion from two days ago. I haven't been doing anything of interest. Just trying to get through another day, one day at a time.
The person who provided the feedback on all this pointed out this is not new behaviour for me, that I have always been self-absorbed. And that they had a lot of judgments about this and other things I have been doing. That was the tougher part to hear. I have never felt like a perfect person, far from it. But I have tried to interact with people without judgments about them. I find that having lots of judgments makes for an overly controlling relationship, which ultimately doesn't make anyone happy. Judgments on things that are part of my core values, well, that just hurts. And makes me wonder what the heck I have been doing, hanging around with someone who has all that brewing inside them. So letting go of this relationship, which was obviously not working for the other person either, was a good break.
I am not asking anyone to tolerate me if I am being obnoxious, sick or otherwise, but I am in a place right now where my world is small, and scary sometimes and what I need from friends is to be there, without judgments if at all possible, to just help me get through it all. Fortunately, many other people have done just that, shown up and said "what can I do" and not had a preconceived list of what would be "good for me".
If the tables were turned and I were asked to be there for a friend, I would hope that I could do so without bias, judgment or a lack of honest communication. Just being there is sometimes what is needed. It is still hard for me to ask for help with daily things like laundry, but I am getting better, because friends like Betty just offer and make it happen as if it were no big deal. And as I find myself failing health-wise, I am going to need more of that. Even if it feels self-absorbed!
Friday, November 16, 2007
For the first time, I started to wonder if this is what dying feels like; the life force simply leaving your body, leaving you feeling almost unable to move. I got pretty sad, I am so not ready for this. And then I remembered that most likely the cold was dehydrating me so I called the doctors to arrange to come in for a transfusion of fluids, to kind of pump me up again.
I drove myself there, although I was already a bit lightheaded and shaky. They have a little area in radiation oncology just for this purpose, so I guess I am not alone in needing more than just the daily zap of the machine. Within the hour, I was hooked up to the IV pump and fluids were slowly dripping into me. The whole process took over two and a half hours, and I slept through all of it. They also did more blood work (hey, they had access to my vein, how could they resist?). When I was done, they took me over for treatment and then told me that my blood levels were down really low again (accounting for the extra fatigue) and that a blood transfusion was in order. So that is where I am heading this AM, after taking Sofie to school.
Last night, Betty P came over again and took over the feeding, spelling word practice and bathing of Ms. Sofie. Sofie sounded really happy, so that was a good thing. Better to have someone full of life and energy doing these things than a depleted mom who is grumpy.
Sofie's therapist continues to tell us that she is OK, even though I wonder about that. She has expressed to me her frustration that I am in bed too much (and she is right, these days, I get into bed about 5:30 or 6 PM and really don't come out much until morning). I am hopeful that once the cold moves out of my body, which I hope is soon, that I can at least get a bit of zing back and be able to make dinner and eat it with her.
Feeling depleted is just depressing. Sure I can take a pill for that too, but I know what I am feeling and experiencing. And I am getting scared. I don't want the next bunch of months to be like this. I want to experience fun again. And enjoy eating. Ensure doesn't appeal at all, and for the short haul, I may have to do it, but I am not going to like it.
Why is it that they haven't figured out yet how to cure the common cold? Surely if they are making all these strides in cancer and other diseases, the head cold could be managed better?
Wednesday, November 14, 2007
Every time I get one of these colds, I have to wonder, when they are thinking of alternative fuels, why haven't they considered mucus? I must have generated three gallons yesterday alone, and surely if they could figure out a way to convert that to fuel for vehicles it would solve at least part of the energy crisis. And make people like me, with these stuffy heads and constantly dripping noses feel they were contributing to the greater good. Just a thought.
My friend CJ is visiting from Colorado, just here for a few days added on to a work trip. I have known about this visit for over a month, but did not imagine I would be so incapacitated during this time. She has been wonderful, helping entertain Sofie and do the bath, and we have been catching up. She is in a great place and is just glowing. When you have known someone for so many years, it just makes me feel great to see her in this positive place in her life. We have known each other about 20 years, I think, give or take, from the old Festival circuit. And seeing her now, in such a solid place, at peace and truly happy, is so great.
Today is treatment number ten of fifteen planned radiations. Over the hump and into the home stretch. They (the radiation folks) are the nicest, most efficient folks I have encountered at Duke. Always pleasant, always on time and just caring. Yesterday, I was in a pretty shaky place when I went to radiation, having not eaten much all day and having thrown up what little I did manage to eat. So I got there and they were all soothing and wonderful. I actually will miss seeing them when I am done. But there may be future rounds of radiation, especially if it works as it seems to be doing, on the pain. The tumor area is still kind of bulgy and big (hence the name "the brick") but the pain is definitely lessened and doesn't even kick in sometimes until the afternoon, when I am getting tired. So in the mornings now, I don't even have to take the Vicodin anymore most days. Score!
I am hoping that taking Sudafed and other over the counter meds will kick this cold or at least most of the nasty symptoms out of my body quickly, especially before the travel planned for next week. Thanksgiving airline travel is challenging enough without having a head cold to add to the excitement.
Thanks to everyone who sent little encouraging emails to me. I hope to be getting out of this place of tiredness and general blahs soon and celebrating with my brother David and his family. They have all sorts of kid-centric ideas for the four day visit, so hopefully Sofie will have a great time. I cannot wait to see the kids and my littlest nephew Will, who just turned two. He was only three weeks old the last time I saw him.
Sunday, November 11, 2007
We had a good day yesterday, going to an evening play date with Emma and Jacob and ending up with a movie and art projects. We did not get home until a bit after ten. Sofie was up bright and early this am, before 7, as I was sitting quietly, drinking a cup of tea and enjoying the peace and quiet. We worked a bit on the unfinished art thing, a Dalmatian dog and got it pretty much done. She is playing quietly in her room now, waiting for me to make her get ready to go to ERUUF. She still resists every week.
I am gently reminding myself that these little successful days or moments are good things and that they mean I am not permanently bed bound. My biggest fear right now is the acceleration of the illness and becoming too disabled before I get some of the fun stuff on my list done. Not ready yet!!!! And I have lots of pragmatic stuff incomplete too, although we are working on it.
I continue to give items away and enjoy that. Tomorrow I am going to my workplace for about four hours, to do some must do items (pass along passwords, put out of office messages on the phone and such) and to celebrate Thanksgiving with my work colleagues. It is a bit early for sure, but we do this every year and this was the only day we could reserve the large room needed for it. Nearly everyone comes.
I sent out an email to my colleagues last week that told them I was not coming back. It was tough to write but I know I needed and wanted to do it. I look forward to seeing them tomorrow and over the next few months as I visit the Library and spend a little time there (but not "working"). I am officially on medical leave now, as of November 1st and that is giving me some psychological pause to stop feeling so guilty for not being there. It wasn't according to the master plan, but my body told me what to do and I followed through. Evidently it seems to trump my planner self most times these days.
I hope that I continue to feel better into the next weeks and for Thanksgiving, as we are headed to Chicago area to see my brother and his family. The cousins haven't been together for two years, and that is way too long for kids. So I am excited. I will have to pace myself, nap, etc, but that should be fine.
Friday, November 09, 2007
This not eating thing, I have to say, is so bizarre. My whole life since childhood, there have been concerns about eating too much. I cannot ever recall a doctor or anyone saying "are you getting enough to eat?". I tend to have a moment of an out of body experience when these talks happen. As in "who the heck are you talking to?" Cannot be Debra, she eats. But it is me. And eating or not eating has become a focus of this week.
When these times happen, I have noticed I usually focus on a particular food, until such time that the food becomes rejected or just over-done. A long time ago, it was the Hardee's Twin Burger, until the big day when I ate them then puked them up. Haven't been able to even think about them since then. Then it was bagels and cream cheese. Now it seems to be a six inch tuna sub with provolone cheese from Subway (which is because there is one across the street from where I get the radiation). Anyway, I ate one yesterday and didn't puke or get sick or anything!
Friends Betty and Delma came over last night with Chinese food, Sofie's favorite stuff, and fed us and then took over the practicing of the spelling words (there are weekly spelling tests on Fridays for my little second grader), then the bath and bedtime routine. Delma did the bath stuff while Betty helped me fold laundry then massaged my feet for nearly an hour! Pure bliss. I realized by the time they left around 9 something that I was feeling better than I had the whole day. Sure, I had taken more pain meds and anti-nausea stuff, but I really was feeling better. I managed to drink a glass or two of water (to prevent that dehydration stuff) and slept a pretty restful sleep for me, which means I was only up about four times. Including around 3:45 when Sofie arrived with her blankie, snake and stuffed dog. I was too tired to make her go back to bed and besides, she smelled great from her bath, so she slept next to me until I got up, wide awake, at 5:30 this AM. I felt pretty good, but took the anti-nausea meds for prevention and started our day. Got Sofie up and did flash cards and a practice spelling test (she did great!) and got her off to school.
Today is the day I try to get her early, so I plan to head over to radiation a bit early today, and see if I can't make it back to Sofie's school on time for afternoon pick up. We can spend a bit of time together, then she is spending the night with Jamie.
It really is remarkable how the help from friends or folks who offer to help can make such a difference. Last weekend, a covenant group of about six folks from ERUUF came and did yard work, scooping up 18 bags of leaves and generally tidying up the front and back yards. And as an extra bonus, someone with a tall ladder helped change some burned out bulbs. These are things I could not have hoped to get to on my own. And it was fun to get to meet everyone over pizza lunch in my living room. This was pure goodness, offered and received with gratitude.
Same with friends who continue to offer help with kid stuff, food, etc. All of it makes me realize that I have support, even on the days where things seem the most bleak. And that is a wonderful thing.
I am hoping to get past this nausea/pain/bowel/fatigue thing and have a bunch more months of functional time. I have plans, dammit! There are meds for the fatigue (seem to be working) and the radiation is having a positive effect, I think. So it is mostly the nausea and the bowel thing we need to work out and I suspect there is hope there too. I have to have faith that if we keep tweaking the meds and such, there will be a combination that works well. I sure hope so.
Tonight, I am looking forward to sleeping peacefully, reading some from Eat, Pray, Love, the book I have been reading for the past month. I haven't really focused enough on the middle section (Pray) but I love this book and I really want to get to the third section, so that is a short term goal for this weekend.
Sofie has some play time planned for Sunday so I know I have some respite time and things should be fine this weekend. Assuming that the movement towards feeling better continues.
Thursday, November 08, 2007
Later in the day, I got a few other things off my list, including taking a box to UPS and picking up clothing at the dry cleaners. None of these things are monumental, but sometimes they feel that way.
The day went OK, pretty much. I was hungry and finally ate something about 2 PM. I also broke down and took one pain pill in the afternoon, but overall, it was a better day for pain. Don't know it that is because of the radiation, as I have only been zapped a few times so far, but maybe. Or maybe it was just a better day.
Later in the evening, I was able to eat a few fork fulls of baked ziti, which was kindly delivered to us by a school parent who offered to bring us dinner. I barely know her, but she wanted to do this. It was delicious, I was able to be off the cooking hook again for Sofie and it worked out so well. I am trying to be open to all the generous offers of friends and near strangers!
Today, I am having a massage in the AM. I really need this, I am tense a lot in the shoulders and neck as well as the new location of my jaw from this clenching thing. Not fun. I don't have a lot on my To Do list today, but will attempt a few things before radiation, then try to nap a bit before getting Sofie. Even short naps of an hour or so help.
Betty and Delma are coming over this PM, with dinner of some sort, and will help me with the bathing and general stuff with Sofie. These days, I find myself needing this help more and more, which worries me. I did not expect to be so debilitated at this time. I am hoping this nausea thing passes soon and the pain is more controlled. I want my life back a bit more.
It is supposed to be 28 degrees out this AM, like winter. It will be another battle to get Sofie to wear her winter jacket. She is still resisting, saying she gets sweaty. But I don't want her to freeze her little tailbone off.
OK, I had better get in gear and get into the shower. It will be interesting to see how this day emerges.
Tuesday, November 06, 2007
I am supposed to have 15 sessions (three weeks), but the holidays might cut out a day or two, unless, as they are planning, they do some on the weekend before Thanksgiving. Personally, I would be happy to be done right before. I get on a plane to Chicago to visit my brother and his family on the 21st, the Wednesday before. I am likely to be pretty fatigued, but otherwise, should be fine if the visit is kid centric and gently paced. I can sit and watch them play.
But back to the slo mo thing. Is it lethargy? Depression? Sadness? All of the above? I do know I still must (and by must I mean it is not really negotiable) have at least one nap a day to survive life as I know it these days. I am experimenting, sometimes I come back after dropping her off and go to sleep for another 90 minutes. That seems to help. I don't sleep well these nights, getting up due to all sorts of things (cats, having to pee frequently due to pressure on my bladder from the tumor, Sofie waking and needing me to find her missing blankie, you name it). And sometimes when I wake up, the pain is back so another pill, and then the wait of 20-30 minutes while it kicks in. Last night it was 1:51 when Sofie came into my room to "snuggle" and then an hour later before I was back to sleep, due to pain and general discomfort. I certainly hope the radiation does help the pain, that will be a great plus.
I have considered sleep aids, but they all say something like "allow seven to eight hours for sleep". As if!!! Who's life is that anyway? Not mine. I would have to sequester the cats and the kid and overdose on the pain pills to get 7 hours of continuous sleep. Oh, yeah, and not drink much.
Speaking of not much, my appetite has just about disappeared. Eating holds no interest for me anymore. This is in a way, the fulfillment of a lifelong dream: to not care about food. But I am now dropping a pound to 1.5 pounds a week and the doctors are not happy. They gave me samples of Boost and Carnation Instant Breakfast the other day. And Ensure. How did this happen to me? I have struggled my whole life with overweight and now, not eating is frowned upon. I get hungry sometimes, I eat four crackers and that covers it. But last night, one piece of pizza caused so much abdominal pain it wasn't worth it. So what am I to do? Drink the Ensure goo, I guess. I have a bunch of samples to try before investing in a particular flavor.
Life in Slo Mo means projects take days, not hours. This is very frustrating, but I am learning that this is also my life. People are stepping forward to help, will write about the past weekend in a separate post. I know and feel loved and cared for. But sometimes, this whole process is lonely. Or something like that.
Tuesday, October 30, 2007
Deb McSmith, newly in the Triangle since September, planned a little road trip to Wilmington (about three hours from Durham) last weekend. She did all the planning, including finding a terrific condo on Carolina Beach (another 20 or so miles up the coast) where I was blessed to have the master bedroom, overlooking the ocean.
I had been and continued to be nauseous and in pain, but there are pills for that (don't leave home without my pills these days!!!). Deb did all the driving. We kept a leisurely pace.
We picked up a few groceries in a small market after kind of just driving around, looking at the various houses (all colorful on Carolina Beach, like "Smarties" candies), and just roaming. We were referred to a great seafood place. I have finally learned a lesson I was trying to learn my whole life..... portion control! We shared a shrimp cocktail and then a wonderful plate of scallops. I could eat three shrimp and five scallops but every bit was delicious and I was totally in seafood heaven!
The next day, Sunday, we headed for Wilmington, which has all sorts of "historic" buildings downtown. Truly lovely. We did some looking normally better done on foot via the car, since I am not as lively these days, then we parked. We asked someone for a good local restaurant and again, we were not disappointed. I had sweet potato pancakes and savored each bite. Then, we walked, fueled by a good brunch/breakfast.
And the fun began. We found a charming little gift shop, one of those that has all sorts of things you don't see everywhere and we shopped. Right after I believe I had declared I did not need to buy a thing. But in a way, I didn't, these were presents for the holidays coming up.
Then we were browsing around and lo and behold, a tattoo place. I don't know what came over me, but one of the things on my long (in my head) "to do" list was to get my old (circa 1985) tattoo recolored. It is a scallop shell (you see the theme here, now, don't you?) and in those days, the colored inks were just not that great. I had the original tat done in Maui, but I asked the burly guy in the doorway if they could recolor it and he said "sure". I told him I would think about it (being low in the white count department, I wanted to at least take a moment to pause and consider risk factors). But I was back in there in five minutes.
Yes, it hurt a bit, what pleasures in life don't include a bit of pain? But it is all lovely now, just like it was in the fall of 1985, when I got this first (and to date, only) little tat. I am really happy about it, it seems to be healing well and they use totally disposable needles now, so no worries in the infection department. My nurse and doctor probably thought I was nuts (what 55 year old cancer patient gets tattooed?) but what the heck. Something else to cross off the list.
The last shopping adventure was in a vintage clothing store. I found two adorable little black dresses, size 1-3. Ha! You wonder if I am that size? Never will be. But my friend Laurie's daughter Maya, who went on the cruise this past summer with us, is a 2 or 3 and is in her first year at Tufts in Boston. I called her, lamely describing these dresses and then just picked one and plan to send it to her. It really is classic, black with lacy, sparkly bodice. I hope she saves it for ten years, maybe by then, Sofie will want to wear a cute dress. Maybe. I think that is what this purchase was about, wanting to buy my teen aged daughter, the one I won't ever get to know, a little black dress. To which she would probably say "Oh, Mommmmmmmm". And never wear. But maybe Maya will! Maya is fun to dress up, she can wear anything if it is tiny enough. Never was my issue.
Supper we intended to try another restaurant, but it was smokey (yes, I know I live in a tobacco state). So we went back to Bowmans, the great seafood place and took our dinners to go. Eating in front of our TV, I had the best fried clams I can remember in twenty years! Good food, even in small amounts, can be so healing, I think.
The drive home was uneventful, but I am so grateful to Deb for this opportunity to be away from home, kid, cats. And to know that if well-paced, I can still do a road trip.
On to other adventures this week. I had the biopsy yesterday and today I start radiation. What a week this is.
Saturday, October 27, 2007
More after I return.
Thursday, October 25, 2007
I have been meaning to write for days, there is a lot happening, but the nausea and general state of queasy has prohibited sitting and being creative.
Which is odd, since I haven't had chemo for several weeks now. So why the nausea? I am taking meds for it constantly.
So I will bullet point the highlights. And write more creatively later on. Suffice to say, life kinda sucks at the moment. And I want to spend it in bed, or lying down, most of the time.
- Chemo is not working, the CA-125 was 702 last time. Not good. Chemo stopped as of last week, but I had already been off a week, so this is now week three of no chemo. But nausea continues. Why??????
- Avastin not known if working, so that is also cancelled.
- No energy. No motivation. I feel punk, most of the time.
- Went to see radiation ocologist for pain control. They will begin radiation in a few weeks, to hopefully "shrink" tumor site and allow better pain control, at least for a while.
- Will have a biopsy of the tumor site next week, on Wednesday (treat or treat!!) then test against other chemo agents not yet tried to see if one out there might work. I am keeping my fingers crossed, but optimism tempered by pragmatism. So not holding breath either.
- I feel crappy most of the time, hate complaining, but I do. Not good for parenting, homework, life.
Friday, October 19, 2007
I decided that after not sleeping last night, not much, I would cancel the appointment today and took one of the new pills. I lay down at 10:15 and awoke at 2:45! I guess it kind of worked. But I have been a bit nauseous all day and food, most food, makes me want to hurl.
This appetite thing is strange. My whole life, I have wanted not to care that much about eating, to not eat or eat less. Now, with my appetite all but gone, food has truly lost its appeal. But I still cook for Sofie and sometimes for Jamie, and I should eat. So they tell me (first time in my life that a doctor has encouraged me to keep eating when I can). I made myself a small baked potato tonight, that was about all I could muster. Even chocolate (the average kind, not high end) has lost its appeal and tastes waxy. The good stuff still is worth a bite now and again. I consume a lot of unsweet iced tea and water. Even the coffee is not doing it right now and dairy is something I have learned the hard way to avoid for the time being.
Managing these moments, the queasy and painful ones, is tough. Really tough. I just want to be in bed, under the covers with a hot pad. For some strange reason, a heating pad makes me feel better sometimes. Like it were just a bad case of cramps (as if).
I know I will get better at this. And the consult on Monday with the radiation oncologist for pain control is encouraging, I hope it will work for me. I cannot keep going with this pain level and I expect it is likely to be worse, not better in the months to come. So I need help!! I have to do that so I can still be a bit of a fun Mom.
Today, after an early pick up and a trip to Costco, we had an afternoon video, followed by dinner and games. Board games, and Ms. Sofie, I am sad to report, is not a very good sport. How do you teach sportsmanship to a kid? She gets all pissy when I win, and overly excited when I don't. Not very nice behavior! I will do some reading on this, I am sure there are articles or books on how to make your kid more reasonable when it comes to playing games.
I am off to bed a bit past 9 PM, as tomorrow is Saturday and I have to be up to make pancakes in the morning, part of our Saturday routine!
Thursday, October 18, 2007
Sometimes I hear her and wake up (checking the clock to see what time it is, it varies between 1:30 AM and 4:45 AM). Sometimes I wake up and she is there, all legs and arms, cuddled next to me. I stroke her hair, and drop off back to sleep.
I know without words being spoken what this is about. And, as much as it is probably a "bad habit" I cannot bring myself to change this. I need it as much as she does. Sometimes like this morning, when I have no idea when she arrived, as I went to bed early, I just reach out and hold her little hand in mine, while she sleeps. Sometimes, when she is doing her burrowing and back flips, I gently pull her back "into position" in the bed, so she doesn't take up more than two thirds of the mattress. She rarely wakes up. She just snuggles down into the bed and continues her slumber.
She snores, and I have come to really love to hear her little snores, her soft breathing, her little sighs and noises. I don't know if we will keep this up as my body gets more painful, but hopefully we can "co-sleep", something we did not get to do when she was an infant. Perhaps it will make her memories of me more vivid. In any case, I cannot think of a good enough reason to stop this, not quite yet.