Sunday, January 21, 2007

Weariness Beyond Measure

So, despite my hopes to blog on an every other day basis, the sheer exhaustion of the past weeks (months?) is making it impossible. I cannot drag myself downstairs at night, all I want to do is sleep.

The last entry was a bit more upbeat: spoiler alert! This one is going to sound like a lot of complaints. But in fact, having no energy for me is devastating. I have no expectation of being my "previous" high energy self, but I would like to be able to shower, dress, clean the cat box and fix breakfast without thinking that I will need a two hour nap.

The docs ordered iron studies this past week. What basically showed in the labs was that I am not absorbing any of the supplements (natural or otherwise) that I have been forcing down for the past nearly ten months or more. Kale, broccoli, pills by the hundreds, all for naught.

So, how to describe this feeling? I sleep at least nine hours at night, not always straight through (I have been plagued with sweats and other sleep disturbances the past two weeks), and nap when I can. I haven't worked a full week since December. I wake up thinking I am good, go downstairs, scoop the box, then take my "warm" shower, towel dry my hair, and go upstairs to attempt getting dressed. Sometimes a quick e-mail check. All this is between 6 and 7 AM. Then, I get Sofie up (imagine a teenager in a tinier body, she is hard to awaken). We work on choosing her clothing, these days, not so successfully, she is getting more and more picky and the weather is colder, so she gets pissed when I tell her she needs long sleeves not short. My daughter mostly runs warm, I run ice, these days.

By 7:30 or so, all of us should be dressed and the eating of breakfast commences. Somewhere in there I pack up the lunchbox. I usually plot the lunch in the shower, so it is pretty rote.

We make sure that everything is packed into the backpack and then, after Ms. Sofie dawdles over her food, I attempt the dread hair brushing.

Sofie had wanted to grow her hair long, and we preceeded in that direction all summer, despite the mess that happens with swimming (pool, lake, you name it, it craps out the hair). But last week, after her shrieks of "you are torturing me", I had it, and we got it cut to last year's bob, with bangs again. Yes, bangs, with all their upkeep, but I could not do it any more. It still tangles, but it is better.

So, back to the weariness. Last weekend, my friend Barbara came down from Asheville late Friday night and stayed with us until mid-afternoon on Sunday. I don't know how I would have managed if she had not. I am so tired in the evenings (evenings being defined as any time near dinner these days) that I did not have the energy to bathe Sofie or get her to bed. Barbara cooked, cleaned up after us and interacted with Sofie. I slept, a lot. I love her for this, and I hate that it is needed.

Jamie has been, despite being in her fourth cycle of six chemos, a steady presence. She has picked up Sofie some afternoons, she has hung out with us/her, and generally just been a solid person to count on. And all the while, she is dealing with nausea 24/7 two weeks out of three.

Other friends (Jamie B, mother of almost five year old twins, Tracey and Sharon, the Ingrahms, Susan and Joy, Kim, Betty and Delma) so many others have been there and offered help. I am having to say yes a lot these days, yes, I need help, yes, food deliveries will be great, etc.

Two women, Ruth and Rose, came over Thursday night with a feast for Jamie and I. Wonderful soup, deviled eggs and a great chicken salad. And more. They called as they were leaving their house, I had no notice, so working out space in the fridge was a challenge, but it worked out. And I have been eating off that feast all weekend. My appetite continues to be iffy. I feel hungry and I know I should eat protein, at least, so I have been having soups and nibbling on the chicken salad with crackers. Voracious, no, but the food is wonderful and the best part is not having to fix it.

Other friends are home, cooking as I write this, and will bring things tonight. I remember the first round of cancer treatments, when friends offered food and it really wasn't necessary. Not only could I cook, I had a huge appetite and it was not a problem to be self-sufficient. But now, with energy at an all time low, I am a willing receiver of the bounty of friends.

On Friday last week, I had a port-a cath put in. My veins, once so fabulous that it was hard to miss a stick, are now quite scarred from being used on a weekly basis. So the port-a cath goes under my skin, kind of on the right side of my body, on my upper chest. I figure, what is another scar at this point? The surgical procedure was done Friday morning under light sedation, I was awake and could feel the pressure of what they were doing, but little pain. Now my chest feels a lot like someone walked on it, but that should be gone within the week. I have a dressing on my neck (small scar to insert tube) and on my chest. I can live with that.

They also gave me two units of blood. I expected to wake up on Saturday feeling a bit more like myself, but instead, after hours of rest (home by 5:30, pretty much slept until the next morning with brief break to eat soup), but no. Today perhaps a little better, but nothing like "normal". Will I ever know that normal again?

Sometimes, this dragging around, this incredible weariness with no end in sight, brings me to tears. Of frustration, more than anything. I don't feel like I am being a good mom, I get short with Sofie and now, because one time I said that the treatments were making me tired and crabby, now she says "I sure hope that medicine works fast so I don't have a crabby mom so much". Ouch!! But she told me that she loved me anyway. We still argue, but I am trying to do that less. If I die sooners than later, I don't want her memories of me to be ones of arguing over matching her socks. They are her feet, anyway.

It is funny, how I think (or don't think) about my appearance now. Mostly I go for comfort and ease of dressing. So work is kind of a simple uniform of pants, (grey/brown/black/light grey) and a cashmere sweater (for the warmth) and earrings. I try to match the socks and if I get that all done, I call it a day.

I hope that sometime in the future I will care about clothes again, at least a little. My hair is still salt and peppery, but people seem to like it. I plan for now to keep it kinda short, again, less to worry about.

I still want manicures, my concession to grooming, but this weekend, it was too complicated to even try that, so I will figure it out later.

Every bit of energy now is precious. Keep sending yours, maybe if the iron supplements don't work, the energy sent by friends will.

My gratitude and love to all of you who write, call and keep me in your thoughts.

Friday, January 12, 2007

Ice, Ice Baby

Today is Friday, the end of what seems like four weeks instead of just one. After having the treatment on Tuesday and studying up on side effects, prevention of side effects and discovering the joys of icing my hands and feet several times a day, I ended up going back to the office Wedensday and Thursday. And it was mostly good, although Wednesday night was not so good for sleeping, so I was pretty wiped yesterday. I brought my ice packs, some cushioning shoe inserts, all preventing friction on feet and hands.

I left early yesterday, and finally *hurrah* got my teeth cleaned, which both psychologically and dentally was soooo good. It had been more than a year, the whole time I was on the other chemo I could not do it, then I got too busy coming back into the world. I felt profound gratitude for the lovely dental hygienist (Ashley) who did my teeth. And as she chatted about her upcoming vacation, a short cruise to the keys and Jamaica, I realized how good I have it. This poor young girl gets exactly one week (five days) of vacation and one week of sick leave a year. Not fair. I found myself suggesting organizing tips for her office staff to approach their bosses for more creative scheduling.

But I digress. Jamie and I took Sofie to Fuddruckers for supper as a "we survived this week" treat. And then Jamie put her to bed, allowing me to collapse into my bed and just lay out. My body was tired, uncomfortable, just plain exhausted and sore. In places I did not expect. Like my butt. (too much sitting in the office, I had not considered that area one to watch out for!).

I sat with ice packs on hands and feet, watching Grey's Anatomy and then more or less crashed for the night. I had planned to go to work for a few hours today, but in fact, I will work from here a bit, and sleep some more. I have to follow my body's lead.

I find myself just savoring the things that are good, even a meeting that goes well, and trying to figure out how the next couple of months will go.

Several things have brought me to tears this week, but they are nearly all good ones: Freda, our HR specialist, without my even asking, wrote a great email to my HSL colleagues on Monday asking for more share leave. By yesterday I had 220 hours. I burst into tears at the love and support and faith my colleagues have in me.

I also have received some wonderful notes from friends and colleagues. And the most wonderful present from a group of my friends and my boss in the Administration department: A cozy blanket, pillow and sock set for when the cold in my body just takes over. It coordinates with my office decor, so it is living there for now.

I am reminded daily that although these are very uncharted waters, I am loved and blessed with friends and family who are amazing in their support. Sometimes, I just don't know how to even respond.

But I am working on it.

Wednesday, January 10, 2007

Day One of Round Two

Dear Friends and Family,

First of all, thanks to all of you who have shared your thoughts, told me you are praying or meditating for me, sending me energy, light and hope. All gratefully accepted with gratitude.

Yesterday, I went to the oncologist. There are two “things”, lesions, on my liver. As far as they know, on not in. This is significant, evidently. This is considered a recurrence of the ovarian cancer, not a new cancer. Ovarian cancer is tricky, it can shed cells and sometimes they land on body parts like livers and the peritoneal cavity.

It turns out that I was a “primary non-responder” to the chemotherapy I had in the spring and summer. About 20% of the women who take it are. This is not the kind of special I wanted to be, for once, being in the other 80% would have been far more preferable. But special I am, so now they are trying a new drug. Why oh why could I have not been "special" in another way, gifted with a great singing voice (I am so not), or talent for math (no again) or perhaps even a green thumb (not literally, you know what I mean). Or be in Mensa? Primary non-responder was never my goal.

The new drug is called Doxil; you can read all about it here It is a good site. Reading about preventing side effects, that will be interesting for me, who is nearly always cold anyway. They give you a gift bag and the swag in this one was of a far superior quality to the first chemotherapy bag. Perhaps this bodes well. And it was all purple, a bonus for me, it is my favorite color. I never got into that Teal, well not too much. Purple and teal do go well together, however.

Seriously now:

The side effects are skin friction and mouth sores (yeech). I am supposed to avoid activities that cause friction, like typing, so I will keep it to a minimum. And I got home after 8 PM, so I was wiped out. And still had to be mommy and do reading and getting her ready for bed, and all that without whining (me, not her). We skipped the bath and today she was really rather rank. But I digress.

What I know is that it *might* work. It might not. I will have it every four weeks, for a while (a while is perhaps 5-6 times or possibly more). It does not have the automatic hair loss, so these salt and pepper curls might be around after all.

I do feel that I can try to fight and will keep an optimistic attitude, and use complementary modalities as well, acupuncture, polarity, Reiki, massage, all of it. And prayer.

Several of you have offered to come out and help with Sofie and me. Laurie, a dear friend who lives in Santa Cruz who I see rarely these days, will likely be first. The week she will be here, the second treatment, is unique, because this time Jamie and I have treatment and hence side effects the same day! She (Jamie) will be totally out of comission that week, so this help is invaluable. All offers for this assistance will be gladly accepted and I plan to start scheduling through the spring soon! I will be back in touch with those of you who offered. I am not supposed to do anything with heat (like using a toaster or the over or even a microwave). Which will make cooking kind of hard, so I guess those of my NC friends who offered food were spot on. Lots of little meals, frozen in plastic containers (I know, toxic to microwave, but I cannot lift the other type with tongs)will get us by.

I feel a bit more calm. I have a sense of my mortality being shorter than I might have planned, what with my hearty Ukrainian peasant stock and my grandfather living into his 80’s and all. I guess this means that planning for retirement might not be the priority it once was. But I do want to live to see my feisty daughter grow up. I want to be challenged by the drama of Middle School. I want to travel with her, to show her the parts of South Africa that captured my heart and soul the year she was born.

Jamie and I are talking a lot. We have to tell her about this in some way, and that will be hard, but I want her to understand that although Mommy is sick, she wants Sofie to feel safe and for us to have a long and loving relationship. Even if we argue over oatmeal vs. Cheerios at 7:45 in the morning. Jamie and I are talking about taking a “memorable” vacation this summer, and then perhaps next summer, going to S. Africa with her, even if she is only almost 8. If time is going to be shorter, I want to make it memorable for her. And for me.

Life feels like an even more precious daily gift, one that I continue to cherish. It has brought me closer to my friends, old (long term, not old) and new. It is teaching me humility and asking for help. It is going to be tough, the next few months, the next year. But I can do this, I think. I hope. I pray.

I am going upstairs to ice my feet and hands again. I went to work today and did pretty well, but worried all day about the friction thing. I have to worry about something, I guess.

Good night, all and much love.

Tuesday, January 09, 2007

Dealing with the Fear

This afternoon, I see the oncologist. And (according to my nurse, Teri) start chemo again. Since last week when I arrived home and heard from the oncology folks about the rise in the blood level, and then having the CT scan, I have felt like I was moving in slow motion. I am walking and talking and yesterday, I even went to work for the full day, but it feels completely crazy to me, like a very bad movie or a dream I just cannot seem to wake up from.

I wrestle with thoughts of my imminent mortality. I try not to, but they are there, present with me every minute. When I cry, it is a kind of anticipatory grief I have over not living long enough to see Sofie in middle school or going off to college.

I know I need to have a positive attitude. It helped me a lot last time. But somehow, last time (was that only ten months ago?) it seemed manageable. It was "contained". I got the big drugs to keep it from spreading. But spread it did.

I am no fool, I know livers are pretty bad places for cancer. And I know that Western trained medical personnel, no matter how kind and well intentioned, are trained to fight with all the big guns, even if the battle is not particularly one they can win.

I am jumping ahead, I know I need more information. But I have always been pragmatic. And I have considered my mortality many times. I know I want to have quality of life, not additional months of being totally sick. My daughter deserves that. I deserve that.

Jamie is still in the middle of her treatments, next week is number four. We are trying to organize all this chaos so that she can have her needs attended to also, while she is trying to support me. She went with me for the CT scan. She is going to the doctor's today. Our lives are open books, more so than when we were together, I think.

The fear seizes me in the night, as I try to sleep. Last Friday, the day I found out about the lesions on my liver, the rain poured down. I listened and thought of the rain as my tears, since I could not let them flow, not that night. Fear is so powerful.

Today, it is crisp and cold, but clear. A nice January day. I was obsessed with trying to get my teeth cleaned, as you are not supposed to do that on chemo, and I just had not gotten around to getting it done in the past four months. But alas, nobody had an opening. I tried my old dentist here and then walked into two other offices, cold calling. Sympathetic, yes but no spaces. Who knew dentists and hygienists were so darn booked up?

I guess that pales in comparison to the other things I have to think about.

I have found myself (over the weekend) in purge mode. I look at the piles of miscellaneous paper and stuff I have accumulated and wonder why I bothered to keep it. I think the short range plan is to trash a lot of stuff over the next few months. Whether I have long to live or not, my office will be organized!

I will let you all know what is going on, as I know more. So many friends from here and across the country have offered to come, to help take care of me/us. I feel surrounded by light and goodness. But still terrified.

Saturday, January 06, 2007

Catching up on the Holidays

Dateline: December 27th 2006

In the East Bay

We stayed at Chez Hampel last night, cozy in the Princess Bed and then had a lovely plan to go to Lynn and Lou’s for breakfast and then get our nails and toes done, just like in the before times. But when we went outside, someone had pretty much ripped off the entire bumper of my crappy rental car (a silver Pontiac G-6). I was totally legally parked, the car was in the street, with the clunky bumper thing hanging from a thread. I started placing the calls to the rental place. There was literally minimal to no food in Brenda’s home, she had been away since before Thanksgiving. Hence the plan to get breakfast then shop for her return tomorrow night.

I called a friend of ours, Jessica Lee, “Nola’s Mom” who rescued Sofie, took the girls to lunch (Sofie had been given several crackers, some peanut butter and my profound apologies) and took the kids to Compadres for Mexican food. Jesi is one of those folks that I feel connected too, even after long periods of separation. The girls were the same. When I finally arrived (the replacement car logistics took three hours), the girls were finishing up. I had a little soup and I noticed that Ms. Sofie seemed to be drinking a darker drink than her usual Sprite. Jesi said that when asked what she wanted, she ordered a Diet Coke, clear as a bell, as if she always had that. She knows she is not allowed to have more than a sip of mine until she is a teenager. Sneaky girl. But her post-nausea experience with Coke obviously took over and now she is hooked.

We ended up going to the Oakland Zoo for rides, then as it got chillier, went to Jesi and Jon’s home, where we had wine (just the adults) and the girls played together as if they did it every week. Then Jon came home, we had pizza and then finally, we left for the night. It is so lovely to see people and just hang out.

Dateline: December 25th 2006

Holidaze and gifts

Sofie was surrounded by presents this am, from the great personalized stationery that my sister created for her, to the tons of books and Leap Pad stuff from my brother and his family. Santa was very, very good to her this year. You may not know this, but special arrangements were made for Santa to visit Jamie’s condo earlier in the week before we left for CA to drop off some presents there, including her very first (but surely not last) video game. Sofie gets the Hanukkah/Christmas thing. Oh yeah. Next year: cut back some on the scope of gifts. And give stuff away. Something she does not yet do well.

Dateline: December 23rd 2006

A very momentous occassion

Last night, our second night here, Sofie and I were invited to Naomi’s house for dinner, then off to Teacher Lydia’s (her former music teacher in the toddler years) for an evening of caroling. Neither Sofie nor Naomi showed much interest in eating and the food (fish and veggies) was delicious as always at Chez Churchill, so we ate and let them essentially eat bread. Sofie had at least four or five pieces. We had been kind of grazing all day, and I figured her body was possibly still on East Coast time.

So off we went to the party. Lydia and Gordon’s daughter, Anjy, was a baby in a baby carrier last time I saw her, now she is a lovely little girl, with long flowing hair. The girls played, ate cookies without much supervision (guilty!) and then we came back to Joanna’s where they said they were starving. So a late night bowl of the mac and cheese (the kind with the bright orange glow) and then we packed up and headed to Palo Alto, late. Sofie complained that her stomach hurt just as we were leaving, but she often says that at the end of a day, to prolong the going to bed stuff. I promised a tums when we got to Grandma’s.

So, long story short, we got there, she got into PJ’s and she drank a part of a glass of milk at which point, she projectile vomited all over the dining room table and a little on my shoes.

Poor kid, in the entire time we have been together, she has never vomited! Not on my watch and not any other time that I have heard about. So it was pretty scary for her and she cried and cried. I cleaned her up, took her to bed and within the hour she was up again, barfing. And so it went, three more times that night. The next day, she refused all food and water, fearful that she would vomit again. I finally bribed her with Coca Cola and that turned the table, she drank three small cups and ate crackers.

While I was laying in bed next to her (by the way, all barfing subsequent to the “big barf” was done in the bathroom!) I calculated that it had been four years, eight months and three days since Sofie had arrived in our home in CA. That has to be some kind of record for a child not throwing up, right? I meant to check to see if this was some sort of document-worthy record, but I never got around to it.

Dateline: December 21st 2006

How to over-pack and travel across country without lifting more than ten pounds

So earlier this week, on Monday, I had gallbladder surgery, it was uneventful. The one question I had asked the doctor at the pre-op visit was if it were contraindicated to travel on a plane the third day post surgery. He looked a bit startled, we discussed prevention of embolism, and then he said “but you probably won’t be very comfortable”. Never one to let that stand in my way, we departed to the airport with Jamie driving and let the porters at curbside check do their thing. So what if it were $2.00 a bag, it was well worth it.

Upon sitting on our plane to Dallas, I realized something shocking: my cell phone (which I was looking for to turn off for the flight) was not in my bag. I remembered immediately the course of events that am: Sofie answered it while I was in the shower. I had placed it on the dining room table to pop in my bag but I never realized it was not there. No cell phone!!! Shades of pre-1998. But I would have to deal with that, later.

In San Francisco, another story. No porters. Non visible and the flight was over an hour late from Dallas too. I finally got someone at American Airlines to take pity on my disabled self and get me a nice porter (who I tipped very generously) and he put all the bags on the wheeled cart, and pushed it to the Air Bart or whatever they now have at SFO to get you to the car rental place. Sofie was a big girl and was responsible for her backpack and wheeled case.

Then, rationalizing that it was not truly lifting if I was just pushing, I pushed the cart off the elevator when we arrived, to Budget. My car was all pre-arranged, I just explained to the (very) harried Budget folks that I would need help with getting all the bags into the car. A nice woman from Avis overheard me and simply stepped up, offered to help and took it over. Bless her. I feel badly that I did not get her name, she deserves a formal note to her bosses. Nice to know that there are still wonderful folks out there.

We headed directly to the Wexler household, as I had invited us for Hanukkah dinner. It was lovely, Tamar (age 8) and Sofie played well together, the big kids (Naomi, a stunning almost 17 and Nathan, 13.5) are great and it is always a joy to spend time with Becky and Wex. It was pouring out, they are in Brisbane, so they graciously offered to let us crash for the night, which was great, since I was tired.

The next day, we headed to Palo Alto.