May 25
Tues
Made it to acupuncture, did nothing after that, came home and slept or just rested. No prep for Symposium at all.

May 26
Wed
Feeling lousy, saved the day’s energy for evening performance at ART, but it didn’t work, I told H to go alone or find a date.

May 27
Thursday
Whole day in the hospital: Morning appt with Dr. B, did one work call, then paracentesis, and had chemo in the afternoon. Was able to punt on dinner with A as she had other reunion folks to play with.

May 28
Friday
Amazingly made it to Cambridge by 8:15, did excellent panel from 9:00 to 10:30 then listened to University President and hung out with folks in courtyard till 2:30 took a taxi home. That evening went with H to watch SD#2 perform excellent sketch comedy, same group mostly as the improv comedy group – much fun. Very proud of myself for making TWO out-of-house events.

May 29
Sat
Rested all day in order to make it to 3 hours of much longer gala. Could only sit and talked to people, but they were the people I liked.

May 30
Sunday
Last Reunion-related events: Boys came over for coffee and muffins as they couldn’t make brunch, lots of sappy “take care of yourself” and “we love you” talk. Then off to brunch for D’s birthday, which was lovely small and delicious. Then we foolishly drove to CT to see my parents. We planned to stay about 24 hours. As it turned out we spent 13 of them in the hospital. Oh my. Sunday I tried to get up from a nap for dinner and was too dizzy. Really dizzy. I had a fever of 101.3, well above the 100.5 they tell you to call in with. So I called MGH service they said well unless you want to drive straight back 1.5 hours to Boston and come here, you must go to local hospital ER to rule out infection. Sigh. We went to “my mother’s hospital” where she works as volunteer hospice chaplain.

Waiting was endless and of course by the time we got in the aspirin my ma had given me at home had worked and my fever now 99.5 or something. They took all kinds of blood. Weirdly, I kept seeing only nurses and a doc’s assistant who was quite strange. The docs who finally came in at the end were very nice and competent though so maybe but not the reassuring system.  They admitted me overnight and pumped 3 anti-biotics and lots of fluids.  Also, my blood pressure was low, very low. What a drag. They can’t figure anything out since I have no infection so they keep me till the next day, insisting on doing a CT scan of my liver.

May 31
Monday
Noonish I talk my way out of the hospital by pretending to head straight for my hospital, which is a complete lie. I emphatically refuse to let the aide even put the lunch tray in front of me. So we go home, have lunch with my parents. I’ve asked my ma to make me some plain white rice because I’m still having diarrhea. She does but when I taste it it’s like something someone purposely poisoned with salt, I can’t eat. Tony tries it, insists it’s normal. My ma says that she read a magazine from “responsible providers” or something like that and has decided to become a veterinarian. I make a shocked face. Later she says something about eating food that isn’t cruel and I realize she said “vegetarian” and laugh out loud and explain. She says she didn’t think I had anything against vegetarianism.

After our late lunch, H’s more than ready to get on the road and with luck avoid holiday traffic. We don’t call any more doctors before driving home and the traffic is beautiful, we sail home.

Woke feeling quite human, which was astonishing after the weekend of horror, went back to sleep. Dr. B called 9 something waking me out of the first of many naps. Told me fine to take a day off to recover, start on reduced dose of Xeloda tomorrow. She asked about ascites, I said they felt less bad, she said maybe that was Xeloda working. Seems impossible, but worth having some incentive to go back on it, I guess.

Worried that psychologically I’m already so negative about the drug that I’ll make myself sick even if it doesn’t. Will try to think good thoughts, or better, no thoughts – it’s just one more pill to take.

Did enough email and a conference call at 2 to look like I was working but in fact spent most of day napping, which felt nice. Several times realized I was still living in the dream even as I woke up to do something. Doing something meaning eat, go to the bathroom, answer a few emails. Feeling ok, it’s not a bad life to just sleep and dream. Ate 3 actual meals which was astonishing.  Sat in the noon sun a bit but otherwise did not go out. How am I going to manage reunion, which is in 3 days? Somehow I always do.

Last night I did manage to eat a little dinner with H and SD#3. H had made grilled veggies, rice and sliced up a surprisingly excellent avocado, I managed to eat a little of each and we got SD#3 to try both avocado (reportedly ok) and portabello mushroom (also tolerable). Progress! Funny kid – she decided a while back that her dislike of avocados didn’t extend to guacamole. Last night she claimed that was because plain avocado was tasteless. This one (which was perfect) was not bad she agreed. I was so grateful to my sweet H for making us such a perfect meal. After dinner they made a yellow layer cake with the only really good gluten-free flour for baking. I coached, without getting out of my chair. A nice evening, reprieving my absolutely do-nothing day.

After dinner, Chinese herbalist Dr. G called to respond to my email telling him about Xeloda and asking him what he thought the prognosis was if I kept doing both chemo AND herbs. He wasn’t thrilled about Xeloda, but said none of his herbs would interfere, that his goal was to strengthen my liver and lungs and system generally so they could get benefit from the chemo. Basically he said we need a Plan B for when all these drugs fail. He also told me to keep eating after I told him that the ascites was drastically cutting my urge to eat. He said I shouldn’t worry about what I eat – anything that appeals. “If you want to eat hot dogs, eat hot dogs. You need to fight back against the Xeloda.” Weird.

After a day of doing nothing, couldn’t sleep and starting about 1 AM was  slammed by diarrhea. Took immodium to no avail. As I had promised, emailed Dr. B who answered my 6:30 AM Sunday email  almost immediately (turns out she was on call for the weekend). Talked to her about 8. She said no drug today morning or evening, and call her tomorrow if I’m feeling recovered and she might recommend a reduced dose (2 pills instead of 3). I think I’m just not meant to take things by mouth. Spent the whole day pooping or thinking I wanted to poop. However the Immodium had finally stopped up everything, so no results.

Also talked to Dr. B about the scans, which she said were not good. “Not good – compared to the last ones, where Taxol had been working, or not good compared to my original diagnosis in October?” She allowed that they were different – lungs showing some “thickening;” liver not looking worse but ascites worse and some evidence of disease in the peritoneum; bone mets apparently stable, which is good.

Compared to today, I’d now have to call yesterday a high-energy day. Today I didn’t get dressed, leave the house, or spend more than a little while even sitting. When we celebrated SD#2’s birthday, I couldn’t sit there for lunch, but came down to have one bite of cake and watch her open little presents.

After girls went home, H and I watched “Broken Embraces” which was lovely. Late evening I managed to eat a bowl of soup and piece of toast without getting sick, which seemed like a triumph. And now to bed.

A completely lazy day – I spent almost all of it lying down, reading all of Harper’s magazine, listening to the radio. Went out with SD#3 to refill my Neurontin, then to buy her some art supplies for a school project and again at the end of the day with her and H to buy a little present for SD#2 whose 18th birthday was yesterday (but she’s out partying and at a prom no time for us).

In between I lay in bed and comtemplated my pathetic body. My abdomen is ridiculously swollen. I realized I forgot to take my morning dose of the new chemo and it says not to take it late just skip it and wait for the next dose. I wonder if this is going to delay us finding out if it works. Today I don’t eat at all, have my herbs and some juice and then some ginger beer and feel nauseated. Manage to keep it down and take a compazine but it makes me unhappy and nervous. I keep my plastic wastebasket near my bedside and move very slowly. I no longer know which side effect is from which drug or from the cancer itself. The swollen abdomen is the cancer itself – the liver disease causes fluid to accumulate in the abdominal cavity. Why or how it makes fluid I do not know but I know it kills my appetite as my stomach feels squished most of the time. In the afternoon I feel a little hunger and have a tiny bowl of the rice soup I made after my acupuncturist suggested rice congee with ginger, eating just a small bowl every two hours. Mine has some mushrooms and some greens and some ginger and veggie stock. It’s nice somehow.

The coughing has reappeared too, which is also the cancer, the part of the cancer that is eating at my lungs, making them fill with fluid. I feel as if I will just explode. That is how I’ll die actually; I’ll fall out of bed or down the stairs and just burst like an overful water balloon. So inelegant. Messy. I’ll just be a puddle of strange yellowish fluid. Perhaps like the Wicked Witch melting.

Spekaing at an event on “Balancing Free Expression and Security in Cyberspace.” The other woman on my panel and I seem to be the two female speakers in a group of about of 15, never mind that she’s the only black person in the room with roughly 40 people in it. It’s 10, the panel I’m on doesn’t start till 1:30, am feeling sooooooo tired. May have to drink some coffee as an exception.

Did drink some coffee, managed not to fall asleep, got through my panel, then shlepped to horrible Dulles. Guy in security found my Chinese herbs in carryon which was good because it reminded me to go back and drink them, I would have forgotten entirely. Finally got home about 10 feeling completely and utterly drained.

Wake up early, take pills, fall back asleep. I wake up with the radio on at noon, barely get myself out of house in time to walk in beautiful sunshine to hospital. I’m now convinced that Neurontin is the sleepmaker. Maybe I need to find a different time to take it?

Dr. B. manages to disarm me completely. She looks at my belly with ascites and hears about the pain in it and my lungs and coughing, asks me how long it’s been since I had Taxol (a month) and says softly “I think we’re looking at the disease progressing.” I nod, since I knew this was true. Listening to my belly she says definitively that there’s not enough fluid to drain yet.

She then describes a couple of the possibilities for new drugs which we knew we were going to try anyway. She explains about Xeloda, which is what she wants to try first. It’s chemo in pills that I’ll take 7 days on, 7 days off. It has side effects that I have to watch out for  – diarrhea and foot-and-hand syndrome. The later is pain or redness on the feet and hands – that’ll be hard to distinguish currently as my feet always hurt. But she stressed that I must not ignore these symptoms but call her immediately as they can get bad really fast.

Apparently 25% of folks on this drug have tumor shrinkage, 25% stabilize (good enough) and the other 50% get nothing (or have bad side effects and have to stop I suppose). Still, it sounds worth trying.

She says she wants to do a baseline scan and start the Xeloda right away and then I tell her I’m in DC Wed-Friday. She has a moment of only partially mock exasperation, and then rushes around making arrangements so that I don’t have to wait till next week for everything to get started – they’ll do the scan today, get the pills shipped to my office in DC, all very complicated.

So, having gone in totally fed up with her and Western medicine generally, and wanting to scream at her that we’re right back where we started but now my feet hurt too! I feel relieved to be in her care and somehow better already. However, I didn’t tell her about Dr. G. and the funny plastic packets of herb juice I’m taking twice a day. Didn’t want to have that fight.

H went to church and then ASL, I drove to see C, which was lovely and then we met up with P to see “Babies,” which was awfully cute. When we ate crepes (H&P) and soup (me) I got to that point where I couldn’t stand to socialize any more and desperately wanted to go home. Meanwhile, P has horrible back pain again, may have surgery this summer. I feel terrible for her being alone, not having that one person who can take her home.  I couldn’t do anything without the support of my husband. But of course I’d probably just not bother to go on. Or maybe I would. I really wonder.

Last couple nights I’ve found myself weeping at night, feeling hopeless. I’m now quite sure that I’m back exactly where I was in December in terms of cancer, so all Taxol has done in the long (4 months – is that long?) run is give me neuropathy. I know my cancer is growing again, has grown right back.

It’s both a little lonely and also convenient that H’s hearing problems mean that I can cry and moan in bed all I want and not have him know if I don’t want  or I can snuggle up to him and sob more physically and he’ll wake up enough to hold me and stroke me.

Go to sleep dreading appt with Dr. B, ready to do battle with her about why we’re apparently right back where we were before Taxol, except my feet hurt like hell.

Did not remove PJs did not leave house except for some sun on the patio. H at church rehearsal and then at work for some stupid Saturday test thing from 1 to 10 pm. I read, listened to radio, slept amazing amounts. A lovely completely unproductive day.

Yesterday skipped morning Neurontin but feet felt horrible so maybe it is doing something; went back on it. Now I am SOO sleepy, worked from 10-1 then slept for an hour till a 2 pm call. Now dying to nap more. What a ridiculous life. We were going to go to see Babies but I felt too tired so we got some asian food and watched Mad Men.

H has gone home. I’ll miss his company but  also relieved in a way, so hard to juggle him and work friends at the same time, though they all like him and he them. But it’s painful to see him struggle to keep up with following conversations that are all inside baseball with his hearing problems.

Finally wrote to Dr. B that Taxol is over. It’s coming up on 3 weeks since last treatment and my feet are worse and worse not better and better. I feel no effect from Neurontin at all. It’s crazy to me now that I even considered one more treatment, my feet and legs just feel so awful.

Her short note back (make an appt. with me to discuss what’s next) seemed to express disappointment, but probably just hurrying.

In any case, relieved to have told her, have not told anyone but H yet. Not at all looking forward to telling Ma or others who were too happy for me when it worked. Really have to slow down the level of communication, early oversharing has put me in an unmanageable place. I have to find a way to tell people this is really just a boring chronic disease, like diabetes. Live and learn, I suppose. Worse yet, I find myself getting annoyed even with people who really care very much about me when they keep asking and the news is not great.

Trying to figure out if I can make it down to see the ‘rents next week, always easier to focus on someone else’s problems.