hooray for salt water

Well, after a full day and then some in the hospital, we're no closer to knowing whether there's a tumor wrapped around the main artery to her brain, but she who was starting to seem very husk-like and frail looks, after untold bags of saline plus some magnesium and potassium, like a plant that has been watered. there was no vomiting today, no as-needed pain medication for the neck, and she ate three full meals. That's THREE. FULL. MEALS. For the last few days, five string beans and three tomatoes have felt like a major victory, so this is very good news. Thanks to all who have offered to watch Oona, and thanks especially to Leda and Liz, who took care of her for so long today!

Sarah's last day of work was today, so we'll be at the hospital in shifts, trying to catch the elusive neurologist and to be there when she gets discharged. Stay tuned, sweet people, and we'll keep you posted.

morning news

They admitted her last night. They think that the tumor on her cervical spine is cutting off the blood flow to her brain (she has some numbness on the bottom of her right foot), and a team of doctors is meeting this morning to discuss what should be done. I'm going there when Oona wakes up, but I'm not sure they'll let me in with a baby; is anyone in New York around today and interested in playing with a baby for a little while? Call me: 415 310 4575.

i hate today

It's raining. It was hard to get to mom's place this morning because apparently in New York, when it rains all cabs go off duty and your brain goes all fuzzball about which way is downtown. But we got there, armed with our trusty half gallon of lemonade, about the only thing she wants to drink these days. Called the doctor, only to learn that we were supposed to be there for blood work. Sarah has her Sloan-Kettering card, though, so she messengers it. It's raining. The messenger takes a long time. After waiting awhile in the lobby of her building, we go upstairs to rest a minute. Finally, it comes. We go. She gets blood drawn. I spill coffee all over the lab. We start to head for home. Oona's hat falls off. Mom leans down to get it. I'm thinking, "don't do that! I'll do that!" but don't act fast enough and she FALLS DOWN on the rainy sidewalk. There's no one to call, come get us, she fell down! We have to get a cab in rainy Manhattan. This took awhile but we eventually succeeded, thanks in part to having a baby out there in the rain.

We were home for only a little while when Maureen, her doctor's nurse, called to tell us that the blood work came back showing that Mom is severely dehydrated and has low sodium levels (translation: not enough eating and drinking, too much throwing up) and she might want us to go in for fluids. Mom takes this as a challenge, drinking three glasses of water and eating more than she has in the past two days. Maureen calls back: we have to go in. The doctor agrees that those levels combined with the fall are just too much. Mom is devastated, a little, but agrees and we get ready to go.

So, to make a long story shorter: she's there now, having had one bag of fluids and getting one and a half more. She might stay the night. They did another CT scan of her head though, concerned about the wobbliness and falling, and it came back fine again.

chemotherapy makes you sick

She still feels pretty bad today, but a couple of things are making it a little easier to handle. One is that she has had a lot more energy today, telling stories and talking on the phone and not passing out in between--she's more composed, or something. The other is that we have news from the doctor that there is a 2-day "high" after each chemotherapy treatment followed by seven to ten days of, well, this: fatigue, body aches, mouth soreness, nausea, and generally feeling horrible. That describes her experience so far, and we're hoping that it means she'll feel better next week (and then worse, and then better, and then worse, and then better). In the meantime, it's a good day (like today!) when she stands up for a moment to brush her teeth.

today

Oona and I arrived in New York yesterday morning and are settled into this amazing apartment, thanks to Amanda and Sarah and Douglas. Mom's first days after chemotherapy have been mostly good--her pain is better, and the nausea hasn't been bad, thanks in part to the medication they gave her for it.

But she had a rough night last night, and felt so poorly this morning that she wasn't able to get up to eat and take her meds, and clueless me didn't realize that if she doesn't answer the phone it means go there now, so she didn't get her pain medication or steroid pill or the other three she's supposed to take with breakfast until 2 hours later than normal. Bad nurse. She also has a little fever today--100.5, so borderline for alerting her doctor, but I called anyway--we'll probably take her in if it goes much higher, but I really don't want to drag her to Urgent Care to get another x-ray, blood work and other tests unless it's really warranted--she's just not up for a cab ride right now, and needs sleep more than anything, I think. She and Oona are napping together now; for a bit I couldn't tell whose breathing I was hearing.

first dose of chemo

So yesterday was pretty amazing, I have to say. Mom was a certifiable rockstar - holding true to the pattern thus far.

We arrived at Sloan around 8am for Mom's 8:15 appointment with Dr. Pietanza. Our friend Susannah (daughter of Gina Karlsson who used to babysit Clancy and Jennifer and certifiable rockstar in her own right) joined us and was there all day with us - made a huge difference. They took Mom's vitals. She has dropped more weight, which we all kind of knew, and her blood pressure is a bit low, but otherwise she is doing well. Dr. Pietanza filled us in again on what to expect with the chemo (hair loss, some nausea, possible pain in the bones and joints, fatigue). It turns out that Mom will have treatment once every THREE weeks, not once every two weeks. She also listened to Mom's lungs and said that they sound much better now than the last time she saw her - mid-February. Mom will have another appt with Dr. Pietanza in two weeks.

We went back to the waiting room for a bit after the exam, and then we were brought back to the "chemotherapy suite" - a suite indeed! We had our own little room - given the option, Mom wisely chose a bed over a chair - with a lovely sliding door and little wood cutout window frames, plants in the window. It was just a really nice room, serene, pleasant, and as Susannah put it "like a Japanese hotel room".

We met Sarah, Mom's fabulous nurse, who is my exact age, super sweet and really bright. Sloan makes an effort to hook each patient up with the same nurse for each treatment, so that's kinda cool. I like the consistency. She did a "teaching session" with us, talked more about the side effects, discussed the different anti-nausea medications, and also went over the plan to decrease the steroids. It looks like Mom will be off steroids completely by early April.

So then Sarah started an IV after finding an appropriate vein (good times!), and then administered a saline solution to Mom along with some "pre-meds"to help prep her veins and system for the chemo. Susannah and I jumped out at that point to grab some lunch, and Sarah waited for our return before she began the chemo. So at about 2pm they started giving Mom the first part of the chemo cocktail, which was Taxol. At the start of each chemo treatment, there will always be two nurses in the room: one to check Mom's info & the drug info on a chart and the other to verify that the same exact info is on the drug itself, before administering it. Pretty cool.

So the Taxol took about 3 hours, during which time Mom ate lunch (Sloan provides lunch when there's a long treatment...she had a cobb salad and ate every last bite. I took a picture of the empty container and will try to post it later!). She also slept for about 1.5 hours of it, which was totally amazing and wonderful. Sarah stayed with us for the first 15 minutes of the Taxol part, because she said if Mom were going to have a bad reaction it would happen then. She slept and ate so needless to say, she was fine. After the Taxol they gave her a bit more saline, followed by the Carboplatin, which took about 30 minutes. We all applauded when she finished the Carboplatin - first treatment DONE!

I wrote out a new chart for Mom so she knows which drugs to take when, and so far so good. She had a little urpiness but was mainly just tired after we left. She had dinner, went to sleep, and successfully took her meds this morning.

All is well.

good days and bad

Yesterday was a bad day, and even though I know it's not the case, it made me feel all alone and I kind of fell apart. Mom was nauseous all day and couldn't get out of bed yesterday, couldn't walk across the room to take her meds, so I ended up leaving work early to help her with that (after sitting at work worrying like a cat in a room full of rocking chairs).  We heard from the doctor in the afternoon and found out the nausea was due to the reduction in her steroid intake - happened too fast for her system, apparently.  

But I'm frustrated because, up to now, I thought that she was able to tell me when she really needs me - she has done it a few times so far.  But yesterday she couldn't do that and it made me panic - like oh okay, I need to read between the lines to figure out when "I'm okay Sarah" actually means "I need you - please come over".  I told her - as my friend Jutta said - that it's fine to tell other people that she's okay when she's not, but she HAS to tell her family, and especially me since I'm here and can be there.

I'm a little bit lost today - lost, scared, and feeling very alone.  I had a good talk with Mom's friend Jennifer last night and she reminded me that I'm going to have good days and bad days just like Mom will.  I guess I didn't really think about that, but she's totally right.

Thanks everyone for all of the calls, cards and support.  It's great to see how much love is out there.

I will go over to her apt tonight after my internship to spend the night, take her to chemo in the morning.  I'll find out all of the details of chemo tomorrow and try to report back then, but as a reminder to those who want to visit (and I'm sorry if this sounds at all harsh):  please make sure you're in good health before you visit her. From my understanding, chemo kills the good and bad cells all at once, so her system will be more susceptible to infection, sickness, etc. than usual.  Don't mind me - protective as usual.

Jennifer comes to town with Oona on Saturday morning and I feel like I'm crawling through the desert, trying to make it to that day.  She'll be here for two weeks and I can't wait.