Tuesday, February 27, 2007

Signs of recovery

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

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

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

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

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

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

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

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

Today, life is good.

Monday, February 26, 2007

Hitting the Wall and Some Drama

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

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

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

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

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

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

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

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

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

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

The begging and whining continues:

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

We arrive home:

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

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

And I wonder why I get tired?

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

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

Life sure changes.

Tuesday, February 20, 2007

Nightmare at the International House of Pancakes

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

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

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

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

I just had to share this.

On My Own

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

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

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

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

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

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

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

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

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

More food for thought on this week on my own.

Thursday, February 15, 2007

Baby Steps

Today, I awoke and wasn't immediately hacking. A good sign! I got up, did a bit of coughing, and then self medicated with the non narcotic drugs. I look for steps forward every day.

I was able to get the breakfast out, the lunch made and the kid up and dressed without being a mean Mom, a good improvement from yesterday.

I keep looking for signs that I am ready to perhaps go back to work soon. They simply aren't there. To the contrary, I usually have to go lay down after a couple of hours in the AM (today Alan and I ventured to Morehead Montessori to be "lunch parents" which they ask for on the Third Thursdays of each month, so the teachers can eat in peace. It was on one hand lovely to be greeted by the ever-enthusiastic Sofie who jumped up and hugged Alan upon arrival. But also a bit disturbing to see how these little kids eat. Today's cafeteria choice was grilled cheese, tater tots, a cookie and milk. And some kind of tiny cup with vegetables in in that was pretty much being ignored by all the kids. It turned out to be veggie soup. A nod to nutrition (what is with the need for tater tots with a grilled cheese?) but only nutritious if they consume it. Most kids began by eating the tater tots, doused in ketchup (which as we all recall, can be counted as a vegetable). Then the cookie. Then on to figuring out how to eat some of the grilled cheese. Some ate the middle only. Some removed the crusts (and about half the sandwich), a couple didn't bother at all and simply didn't pick it up.

Sofie actually did well, I plan her take to school lunches with her tummy size in mind. She eats a half a sandwich, never a whole, so that worked (just spread more peanut butter on the one piece of bread), oranges, and oreos. Never mind the order in which they were consumed, they got eaten. She had not gotten her milk, so I made her do it. First of all, how can you even eat peanut butter without milk to wash it down? And second, she needs the milk calories.

She was delighted we were there. And to make the day better, she was a "car rider" (this is what they call the kids who actually depart school when it is over at 3:10 PM). I got her and took her for a hot chocolate at Starbucks (since Alan was having a phone meeting at 3-4). We returned and they have gone off to Gold's Gym for an adventure. Alan is being a trouper, he has "the cold" too, but is doing Sofie duty with great and endearing charm.

Sofie is totally in love with him, she positively glows when he walks in the room. I like watching that.

It has also been good to have Alan around to talk to. These are troubling times and I need people I am really close to to have "those kind of conversations". I am not ready to head to a therapist, I don't think that is it, it is more talking out loud about the things that are so scary.

OK, I am supposed to be resting right now, so back to bed I go.

Wednesday, February 14, 2007

Sick and Tired of Being Sick and Tired

On the day I wrote the last post, I was truly beginning to feel a bit better from this lingering upper respiratory illness and in general. Then, the next day (which happened to be my birthday), I woke up and felt sick all over again. I really struggled all morning with trying to stop coughing but was singularly unsuccessful. Finally I called my doctor for a killer prescription cough medicine, since the Costco faux Robitussin wasn't cutting it.

I ended up having to go in again. Not that I don't like them, but it was my birthday, I was crabby and tired (from coughing, mostly) and hadn't been able to eat a thing all day. I realized in that visit that I was just over it. Over being sick, over having to visit doctors nearly weekly, just over it.

And I have hardly even thought about the cancer at all, being as I have had all these other distractions.

I got the cough stuff, with a kick ass narcotic in it (take only 1 tsp every 12 hours!). And antibiotics just in case it was bacterial.

The day itself was lovely, with all sorts of things arriving (thanks CJ and Lori for the Edible Fruit arrangement, delicious!) and to the "extended Girl Posse" (Brenda, Pam, Lisa, Eileen, Pat, Alan ahd Kerry E.) for arranging the most decadent of chocolate cakes ever! The baker herself delivered it (I was huddled in bed at the time and refused to be photographed with my cake, but I believe photos were taken!).

At 4:15, Jamie, Beth, Laurie and I went to see "Because I Said So" the new Diane Keaton film which had been receiving terrible reviews. I didn't care, I wanted a light chick flick to take my mind off the coughing and general malaise. It did the trick, I was armed with a whole new bag of Riccola cough drops and made it through.

We got home to Sofie and Ashley (her fabulous babysitter) and all had some of the cake. Oh my goodness, now I know what "death by chocolate" could feel like. But it was wonderful.

I then went back to bed, exhausted at 7 PM. The team took over and got the sugar-high little girl settled down and ready for bed.

This was the last night Laurie was here. The next day and night I thought I would be on my own, but was still too punk to function. Sofie had a long play date with Adrian, thanks to his parents Ken and Alexis for taking her. In the PM, Beth saved the day, bringing with her a delightful teenager (also named Ashley) who entertained Sofie for hours. It was great and felt completely blessed to have such great and creative friends.

We managed to get up and out the door on Sunday for ERUUF, and Sofie, although she protests RE *religious education* every time, seemed to have a great deal of fun. She left with Isak to play for a while, then in the afternoon, her babysitter came to entertain her so I could volunteer for a benefit for Cornucopia House (a Chapel Hill based cancer support program). I had made the commitment months ago, (before any of this new eventfulness in my life was going on) and I was determined to keep it. I had an easy volunteer job at the auction, it was a lovely event and I hope they made a lot of money. The event is called "A Chocolate Affair" and there were tons of delightful chocolate desserts all over the place, in addition to coffee and big glasses of milk. I know I am sick, because I wasn't tempted by any of it! So not normal. Chocolate usually rules.

Alan arrived last night (Tuesday) and today I am feeling better. I was the bitch mother from hell in the morning (not good at all) as we tried to get the last of the valentines ready for school, get dressed and have breakfast and still make it out of there before the tardy bell. While I am not healed, I do feel a little less sick, less coughing, more energy. And my bloodwork from Monday confirmed that my anemia is getting better (four units of blood later) as my red blood count improves. Yay, more energy. I used it today to clean out the fridge, something I "normally" do routinely each Sunday and have not done for nearly a month and a half.

It is looking daily for these little bits of good things, little indicators that I am moving in the right direction and actually getting stronger and more well, that has become something that I look forward to.

I am profoundly aware of how little I would be able to function or get through all this without the love and kindness and good will of friends, near and far.

So I hope this week to try to do a bit more, not push, but try, and see if perhaps next week, I might be able to go back to work a bit, even if part time.

Oh, and speaking of blessings.....I got word from the HR person at my work that I have been "gifted" with a total of 1040 hours of share leave!!! Even with being out most of January and February, that is a lot of time. Some of it from folks I don't even know, many donated as anonymous donors. But how wonderful. It does make me feel less inclined to push too hard, knowing that I do have this cushion of time to help me make it work.

OK, must get off the computer now and get dressed. It is after noon! But I showered and feel a lot more human, so that has to be good.

Thursday, February 08, 2007

The Stealth Cuddler

For the past few nights, Ms. Sofie has come into my bedroom in the wee hours of the morning and, carrying her blankie (now named Yang Yang for reasons I cannot even begin to figure out), and her pillow, and snuggling into the other side of my bed next to me.

I think, with the friends visiting and doing much of the going to bed routine with her, she is missing her mommy time. I have been going in her room just after the book reading and teeth brushing are all done and doing our nightly "routine" which consists of turning off the lights, then we sprinkle "dreaming dust" in each other's eyes and then we sing a song I made up about having "beautiful, colorful dreams". It is very sweet and then I rub her tummy until I hear the snoring.

Even on the nights when I would rather just stay in my bed, I do this because I know that this is a very important part of our bonding, our closeness. And that is also why, although my darling daughter squirms and kicks all night long in my bed, I really don't want to be too harsh and toss her back to her room. She seems to really need the body contact now, another way of extending the love, then connection, the bond that we have.

She is trying to be a good cooperator, but she is also being a very bossy girl. Laurie has called her on it and I hope Alan will as well, when he visits next week. My daughter is rather strong willed (really? how surprising!!!) and can be a bit of a badass in demanding her own way. I have no idea where she gets that from. You know, children are born with their temperaments. Or so they say.

The truth is, I need the closeness to her as well, and sometimes I just reach out in the middle of the night to stroke her little head, or simply listen to her breathing (or snoring). I love her more than I ever thought I was capable of loving anyone and I need all the connections and cuddling I can get, too.

Wednesday, February 07, 2007

The Power of Steroids

I kind of understand why athletes use steroids. I get some in my "pre-meds" with the chemo and the day after, I feel kind of like superwoman. I felt great this am, full of energy, got Sofie to school after making a nutritious lunch, then took Maya to the airport. Following that, we did errands, had a nice lunch, I went to get my hair trimmed and never felt a bit tired. It is now 5:30 (almost) and I have to go help Sofie tackle her homework, never the most fun job but one that needs doing.

Jamie and I both felt the power of the steroids today. Tomorrow, I will go back to "normal" post chemo behavior, with periods of exhaustion, as my red blood count is still nowhere where it should be. But today, today I felt like I could hit one out of the park.

Tomorrow, we are taking Sofie to see Jane, the wonderful psychotherapist we found in Durham a couple of years ago. She saw Sofie for a while, and then we went on an "as needed basis". Last week, Jamie and I met with her to talk about what is going on, the things Sofie is experiencing and saying and to make a plan to start bringing her in to see Jane on a more regular basis. These are tough times for the little girl and we want her to have all the support she can get. And she loves going to see Jane, who has an extensive puppet and toy collection. And a wealth of experience with kids, so I know she is in good hands.

I am not supposed to be typing much (too much "friction" bad for the side effects of this drug) so I will stop here for now. Lasagna is thawed (thanks Sharon and Tracey) for dinner and we will have a nice evening. It was warmer today, almost up to 50 degrees but not quite. Hopefully tomorrow will still be in the mid-forties.

Day by day, that is how I am doing it.

Tuesday, February 06, 2007

Damn Those Numbers

So today was treatment number two. The bloodwork was done last Friday. I got to clinic (same old, same old). It pisses me off that when I get weighed in, the weight has not changed in a month, even though I am eating half of what I ate before I felt so sick....how on earth can I have cancer and still manage not to lose weight? It is hopeless.

So the numbers. The cancer marker (CA 125) was up. Way up, to 472 from 165 on January 3rd. Not good. They (doctor and nurse) explained that sometimes it gets worse before we see improvement. Evidently, Dr. Valea went to one of his gyne-oncologists meetings last week and kind of presented my case. I was supposed to be fine, out of the woods, not having all this crappy stuff happening. And treatment was supposed to have worked. I seem to be very treatment resistant. Nothing I can personally control or change, but when I think about it, I have always been kind of drug resistant.

I need 4 Advil instead of the usual two. When I was pregnant from the in-vitro and it was determined to be a "bad pregnancy", they gave me Methotrexate (also used for cancer treatments) to terminate the pregnancy. It did not work. The next week, they repeated the treatment and when I returned the following week, the fetus was alive and well, and they had to surgically terminate that pregnancy. Hmmmmm, maybe I just don't respond to the big drugs.

This is not good news. I am trying to remain optimistic, but I am scared. If the Doxil doesn't work, they might try an aggressive combination of drugs. My body is already not feeling so happy about all the stuff that is happening. I really hope the Doxil starts to work. But it is a time and waiting game.

Meanwhile, I hear tell that the West Coast is a-buzz with planning for a benefit for me and all sorts of other things. It is odd to feel so out of control with this part of my life, it really is. I was planning to pick up a birthday cake for Friday so friends could gather in my home for a little bit of celebrating, but I was instructed by Ms. Laribee not to do it, that a cake was "being provided". Maybe she is flying Elizabeth Faulkner to Durham to create something for me, now that would be a present!!!!

So I am not supposed to be typing (too much friction post treatment) and I will make this brief. Laurie and Maya have taken Sofie out to dinner at Whole Foods and will be bringing something back for me. I don't have much appetite at night usually anyways. It is delightful to have them here, they are basically taking over Sofie care and she is so enamoured of Maya that she is allowing it to happen without a lot of protest! It is very cute, actually.

But I know that she (Sofie) told Jamie that she did not think I was going to get better. That is so sad. I don't know why she is thinking that or what I can do to be both realistic and also not scare her. I don't know if I will die sooner or not. I hope not. I am trying to fight, to remain optimistic, to "choose life" and meditate on that daily. But I am also aware that I am not controlling this either. The cancer is powerful. I don't want it to be too powerful, I want to be able to fight back and make it back off. But right now, I barely even have the energy for that. I am hoping to have some Reiki treatments soon, perhaps that will help.

The e-mails and cards I have been receiving from dear friends have warmed my heart and given me a lot of hope. Keep 'em coming, please.

Much love,


Monday, February 05, 2007

Lost Time, Lost Self

How did it get to be February already? It was just the beginning of the year. Time has lost me, or I have lost it.

Slightly over three weeks ago, I wrote about the intense fatigue I was experiencing, despite the transfusion of two units of dark red blood. I was shot of breath, too, and feeling, well, old. The day after I wrote that last blog entry, I went to work for a full day, and by 4 PM, the last meeting of that busy day, I was sitting in the conference room with a coat on and a blanket, shivering and panting. My boss took one look at me and said "go home!". But I had my coaching session that night, (which has turned into a comfort fest and a place to just talk about how crappy it feels to be me right now). So I went, and got home about 8 PM.

Sofie was all bathed and ready for bed thanks to Ashley, her fabulous babysitter who has been a wonderful addition to the extended family......I took over from there, and got into bed with Sofie for reading (she reads to me, then I read to her, then we have a sweet little bedtime routine where we sing about having "beautiful, colorful dreams". Then I rub her tummy until she is snoring and I sneak out).

The next day, I planned to work from home, because I had a visit planned with my GP, the fabulous Dr. Marum.....the gyne-onc folks manage the cancer, they seem to prefer passing along the other stuff (like the intense fatigue) to my primary provider.

I worked some at home, but was still really cold and short of breath, especially going up and down the stairs to my office. I did a few errands before the doctor visit in the afternoon, but did not get finished with the post office (the line got too long). This is relevant, you will see!

I walked about 20 feet from my car to her office and arrived short of breath. She took one look at me, and then looked at my hands. My nailbeds were purple/blue and my "pulse ox" (that weird thing they stick your finger into) was bad. She listened to my chest and then said "You need to get to the emergency room, right now". Being me, I said, "OK, but I just have to go back to the post office to mail the packages.....". She was emphatic, "get there now...and have a friend go with you". There was something in her tone, it got me out of there, I called Jamie and she called Tracey who met me at the house and off we went.

I got to the ER about 4-ish. I waited for a bit, then they did the usual vital signs and checking to triage me to see if I was about to keel over (I wasn't), and then we waited. And waited. And waited. Tracey had to go to do a massage, so Betty (yes, the same brave Betty who came to the 6 AM gallbladder surgery with me) was recruited.

Somewhere between Tracey leaving and Betty getting there, I was finally given a little room and a gurney to be on and then the parade of young earnest residents started to come in and do their thing. First I got another chest X-ray. I had just had one the previous Friday, but no, that would not do. Then more blood was drawn, and they started an IV. The first resident was a bit distracted and seemed a little flakey, but she disappeared at the shift change (about 7 I think) and a doctor that I knew from clinic showed up. Dr. Reddick is terrific and made me feel a lot more like something was happening. A cardiac test was done (in the room) and then they sent me for yet another CT scan, this time of my chest.

Then more waiting. By now, Betty had arrived and wisely had brought food from Whole Foods Cafe (which I think of as my home away from home food). I was actually starving, having not really eaten much that day at all, so we both chowed down. Who knew a pimento cheese sandwich (a Southern thing for my West Coast readers) could be so delicious?).

At some point, they came in with the news....I had pulmonary emboli. I remembered my mom had once had an embolism post surgery (a blood clot that kind of breaks loose and travels, in this case, to my lungs). But the keyword here was emboli. Not one. Not two. There were pretty much clots in all the lobes of my lungs. Eeeeeeew. So they began the long process of trying to find me a bed. Betty patiently waited. And waited. About 1 AM, I was brought to my room. My nurse introduced herself (Amanda) and they took vitals. Then Betty went home and they told me to try to get some sleep, since the first doctors would probably be in by 5:30. I placed a call to my Uncle Lew in Palo Alto, since I was too cowardly to call my mom directly. Lew was asked to explain what was going on (since he is the expert medical person in the family) and I then dozed off, for a few short hours, with oxygen on and sitting kind of at a 90 degree angle in the bed. For a few short hours, til the anticipated arrival of the doctors at dawn.

And yes, yes they came. I was sound asleep, and the light went on and it was "showtime". The gyne oncology fellow (who I know) was in briefly, then the vitals happened and all that stuff (they were even having me save my pee, for goodness sakes). Peeing was not a problem, but they are obsessed with measuring things in hospitals.

Shortly after, she returned with her little flock of residents (they are all looking like teenagers to me as I get older). They "presented" me and then discussed the new medication I was going to be on (blood thinners, injectable twice a day). And she implied they might send me home that day.

I totally had a panic attack. I was not ready to go home, still short of breath, and I had this idea I would be found by Sofie, dead in my bed. So I asked for a social work consult and got her to be my advocate for not sending me home right away. Shoot, I was still on the oxygen to breathe! And I had to be seen by the cardiology team as well. So I was for sure not ready to go.

As it turned out, I ended up staying a total of three nights, leaving on Friday. The take home message was not to over-do anymore. I really could have died if I had not gotten assistance when I did. I will forever be indebted to Dr. Marum for getting me into the ER when she did.

I am a pro at the injections, having done that sort of thing before. The clots will take as long as two months to "re-absorb" into my body. And I am dealing with the guilt of not going to work, but knowing that I really cannot. I am still short of breath a bit if I over-do stuff. And I get tired after about four hours of being awake even if I am not doing much.

So the weird thing here is that although I am getting much better at receiving (gifts of food, prayer, energy and love) from friends and family, it is still very hard for me to find myself in this position of neediness.

Friends on the West Coast (you know who you are) are evidently emailing like crazy and planning a fundraiser to help with all the out of pocket costs plus all the non covered costs like supplements, acupuncture, etc. And the endless need for childcare, since some nights, I really cannot get her home, bathed and everything, since I am just too wiped out.

The next treatment is tomorrow, Laurie Hauer, whom I have know for about 25 years, but not seen much for a long time since she moved to Santa Cruz, arrived on Saturday with her lovely teenaged daughter Maya. I still remember Maya being a two year old, and the last time I saw her she was about ten or eleven. So it was a shock to see her tall, lean and just full of self confidence, a senior on her way to college in the fall. Sofie has fallen all over her and is loving the extra attention being lavished on her. Maya will stay until Wednesday, then fly home, Laurie is here until Saturday, for the express purpose of taking care of me as I am not supposed to do anything with heat, friction or the potential of same, for at least seven days post treatment.

Tomorrow, I will have treatment number two. Coincidentally, Jamie is having her fifth treatment the same day. Jamie has been right here, with us, with Sofie, all the past few weeks. But this week, she needs time to recover from her treatment, which includes a drug for her white count that makes her feel like she has flu for about three days. So Laurie is here, taking care of me, of Sofie, so that Jamie can rest and feel nurtured too.

Life these days is just so different. I keep thinking, who am I now? I am not working (I plan to go back, but not until I feel like I can do 4-6 hours in a day without feeling totally exhausted). I am someone now who needs help with all sorts of odd things, like changing the catbox (too toxic for now), cooking the food, getting the laundry downstairs and then up again.

My house feels a little frayed around the edges, with too much clutter and not nearly enough energy to put it all away. All this time, lost to tiredness. I feel quite unproductive. I "should" be organizing a closet, sorting socks, filing and getting ready for taxes. And I will do some of that in the next two weeks, but at a snail pace, it seems.

The Debra who was able to multi-task has been temporarily sidelined. Benched. The person who claims to be me needs naps and hot tea, even though I still crave coffee. But it doesn't agree with me right now, not really. So hot tea it is.

Poor Sofie. I know she is taking a lot of this in, the comings and goings of the guests, the tired mom syndrome (last Friday, she had a little fall at school and when her teacher asked which Mom to call, she told her to call Jamie because "Mama Debra is too tired". I feel like she is slipping away from me sometimes, but then when we cuddle , I know she still loves me and wants me to feel better. I am being as creative as possible with play dates, getting them set up for each weekend, so that she has fun activities to do while I rest or just hang out. But I know she misses the mom that used to live here. The one who did stuff with her. I miss her too. But hopefully this is for the short haul and I will get much better and be able to make more memories with her. Both Jamie and I have decided that this is a priority. To create Mom memories so that if my time is cut short, she will remember me and remember fun, family times together. We are very much that, a family. And for that, I am very grateful.