The virtues of self-reward

As I mentioned in yesterday's post, I am once again ugh-free, and I took full advantage of it yesterday, intending merely to walk a couple blocks down the street to Artist's Xchange (a consignment shop for local artists), buy a small piece of art for myself and return home.

I ended up buying this incredible linocut print done by printmaker Katie Gilmartin. Don't ya love it? It came fully matted to 16"x 20".

Anyhoo, even though I had warned myself about overdoing, once I'd bought the print, I needed a frame for it, and Flax Art Supply was only another six or seven blocks away, so I hoofed it with my new acquisition under my arm. The weather was alternating between chilly overcast and sunny muggy and I was dressed in many layers, so the sunny parts made me a little heatolated. By the time I had purchased the frame and was within 3 blocks of returning home, I was huffing and puffing, like the little engine that could: "I think I can. I think I can". The entire outing lasted more than an hour. I was done in, but content, and wearing myself out like that gave me a really satisfying night's sleep last night.

Despite the good night's sleep, I awoke feeling some residual fatigue. Karen came and picked me up to take me to Kaiser for my blood draw (I passed again. No more Neuopogen shots until 1/16), and then we went to the Garcias where Della was just waking up from her morning nap. Karen read Cito a book. Holly finished a conference call for work. René and I watched Della and tried to keep her from destroying anything, and from scrambling out of sight (she's fast). Then we all went to lunch at Green Chile Kitchen. When I got home, Robert was passing by on foot and stopped in to visit for a bit.

Now I feel really worn out, and probably won't be awake to see in the official New Year, but I wish you all a happy, healthy, and prosperous 2010. Not that it will take much for me personally, but I have a feeling it's going to be a much nicer year than 2009.

Happy New Year everyone!

Singin in the Shower

You know that old chestnut about the moron who kept banging his head against the wall, and when asked why he said "cuz it feels so good when I stop"?

When the ugh really stops, it feels so good, it's hard not to get overwhelmed with elation and do too much. Today I woke up early, as usual, and got up, as usual, to take a shower and get dressed. Ever since my diagnosis, I haven't allowed myself to stay unshowered and undressed past 9 AM most days. Furthermore, as was the case before diagnosis, my bed is made as soon as I get out of it. Plenty of time for bed and days lounging in pjs later, but now, no matter how crappy I feel, I stick to this routine to keep from feeling like a sicky. Anyway, my point is, I got up, merely to stick to this routine. But halfway through my shower, I realized I must feel pretty good, because I was actually singing in the shower.

OK, never mind that I was singing my own scatalogical lyrics to the original theme song of "Wheel of Fortune". (Meg is the only other person who knows these lyrics) The point is, the ugh has lifted, and it's a fresh blessing every time. And I even see the sun peeking out now from behind the rain clouds. I think I need to go out and buy myself a "got well" present of some sort.

Less ugh-leeness

Got five hours of uninterrupted sleep followed by about two hours of uninterrupted sleep, and only some dry heaving first thing this morning. Much better than yesterday. I took a couple of short strolls today and was able to attend to some financial paperwork, mail, etc. Feeling very tired but not so toxic.

Ugh-lee

Yesterday and last night were the worst I've felt since chemo began. I won't go into details, but there was a lot of time spent in the bathroom last night, and not much sleep, and I really needed compazine this morning. I apologize for not returning calls or making arrangements to see people during the holiday break, but I just can't deal with social interaction right now. I have everything I need, and I hope by tomorrow to see an end to this part of the ugh. It's gross.

That was a great Christmas. Now, Boxing Day and Ugh Commencement

Yesterday, the Garcias came over in the late morning for candied bacon bites, popovers fresh from the oven and best of all, to open all the presents I had for them under the tree. It was a perfect gathering. The kids were happy and cute (as you can easily see), and I felt great. As time went on, my energy waned, but I didn't feel unwell, just tired.

They only stayed a couple of hours and after they left, I alternated between dozing and puttering around the apartment, cleaning up the Christmas clutter, and reading the wonderful new cookbook the Garcias gave me (Best of America's Test Kitchen up to 2010).

Slept lousy, in part because I have to push fluids so much during this period, and that means getting up several times in the night to eliminate them. Got up early, and can feel the encroaching ugh. I will take my walk before lunch, and spend the rest of this Boxing Day loafing.

Checkmark by Chemo Round 5 - Five down. One to go!

Round five completed without incident. No side-effects yet. Looking forward to Christmas Day.

Have a great holiday everyone!

Alison!

My niece Alison and her husband Jesse are in California for the holidays. They live near Washington DC now, and were lucky enough to leave town before the big snowfall. I had a nice leisurely lunch with them before they hit the road for Fresno. As you can see from the first photo (taken when Alison was 3), she and I have always been fond of one another. I'm so proud of her. She just completed her first post-grad semester at George Washington University with straight As. And this is a good time to give a shout out to her older sister Stephanie, who as of a few days ago, is officially DOCTOR Stephanie, MD. If I myself had actually gotten at the very least, an undergrad degree, I'd claim some genetic credit. As it is, I think it might have more to do with the self-discipline and good study habits they both developed for themselves over the years.

I think I've made the most of this period of the chemo-go-round. Got the tree up, got all my Christmas shopping done and wrapped, socialized over the weekend with my near neighbors Jason and Marc, my former coworker Claudia (another knitter, one of extremely advanced skills) and the lovely McKeown family who had Robert, Kevin, the Garcias and me over for dinner last night. Della showed off her new skills: signing the word "more" (she also knows the sign for "all done"), and walking with only one hand being held. She's still a little too tippy-toe to walk unaccompanied.

My former boss, Ben, came and took me to lunch on Friday and then took me to my appointment with Dr. Liu. The normal pre-chemo checkup. The lymph swelling is now almost flat. We discussed the radiation schedule and, if I am a candidate, he would probably schedule the radiation to commence after my trip to NYC in mid-March. So here's the known schedule: My last chemo infusion is 1/15. 2 weeks later I'll have a CT scan. If the cancer cells have not spread to other quadrants of my body, I'm a candidate for radiation. I go to NYC mid-March for about a week or so, and maybe a quick visit to Washington to visit Alison and Jesse. By the beginning of April, I should be ready to begin radiation. I don't know yet how many days it will be, but it would be every day, Mon-Fri, for the duration. And then... well, frankly, I don't know and I try not to think too far ahead. Letting it be terra incognito works best for me.

My cousin, who lives in Seattle, and I have recently reconnected cybernetically. Her father was my mother's brother, and when her family still lived in California, our respective families alternated hosting the holidays. She reminded me of the excitement we used to have anticipating opening our Christmas gifts. We always opened the presents under the tree on Christmas Eve after some delicious Italian meal made by my cousin's second-generation Italian mother, my sainted Aunt Gloria. These, the "good" gifts, were always openly acknowledged as coming from our parents. What we got on Christmas morning was just our stockings filled with small toys, and useful things like underwear and socks, and, every year, a Lifesaver book (ie a book-like box that would open to reveal about a dozen rolls of assorted flavors of Lifesavers candies. Do they still make those?) Considering the Christmas Day schedule, it makes sense to me that they did it that way. It was chaotic enough to get the combined households of nine kids (well, we were boomer households on top of being Catholic) dressed and transported to Mass and back, and then to make a turkey dinner for all those people, to want to deal with the pandemonium and the time it took to open the presents on the same day. So that scheme was practical, but when I was very small, and a true believer, it made the communication with department store Santas a little more complicated. I always felt Santa was just a cheap old coot who was only gonna give me some Lifesavers, and my real task at hand was to convince this ersatz Santa, who was palmed off as "Santa's helper", to, in turn, persuade my parents to get me the stuff I really wanted.

Don't worry. I subsequently had years of therapy, and Santa and I have healed our dysfunctional relationship. There are already a couple of really good gifts from him to me under the tree. :)

Retail Therapy

I've loved having the Christmas tree this week, especially late at night, when I turn out all the other house lights and just look at the tree and listen to my iPod.

My third infusion this week will be on Christmas Eve, so I'm not quite sure how I'm going to feel on Christmas Day. I've asked Kevin and the Garcias to stop by for a couple hours, and I have decided to amp up my holiday cheer by surrounding the tree with wrapped presents for them and even some for myself from myself. (My rule about Christmas gifts for the last few years is that I only get them for people I actually spend the holiday with.) To that end, I set out today in a beautiful, air-cleaned-by-yesterday's-rain, sunny and warm San Francisco day. I walked along 16th to Valencia, up to Market and then up Octavia Boulevard to Hayes. I shopped only in small, interesting stores and got some really good stuff. I was walking and shopping for two hours which is a lot for me, but it felt good.

About 30 years ago, at the first Christmas my brother hosted in Canada, where he lived for a few years, my family adopted the English tradition of having Christmas crackers at the Christmas dinner table. I saw these really beautiful ones at Miette in Hayes Valley and couldn't resist. I don't think Cito knows about Christmas crackers, so it will be fun to introduce him to them.

Tree trimming and fake mustaches

Yesterday the Garcias came over to meet my nephew Alex, his mother Kristene and stepfather John who are visiting from Fresno this weekend. Kristene, although no longer married to my brother, remains one of the most important and beloved people in my life. Along with Robert, Kevin and Lina, we all ate a lot of honeybaked ham and trimmed my little (real) tree.


Kristene had wanted to meet the Garcias for a long time because I talk about them so much and she's seen pictures of them since Cito was born. She and John brought lovely presents for the kids (and for me!). Robert, my indentured bartender for the evening, introduced everyone to the Sazerac cocktail and a good time was had by all. Sometime during the evening, I came across the fake mustaches Colleen had given me when she was my chemo buddy and Renecito had us all wearing them for awhile.

It means a lot to me to have a tree this year. I don't think I've ever had one in this apartment and I've lived here since 1992. Since I have chemo the week of Christmas, I wanted the tree to look at when I'm stuck at home having the post-chemo ugh. Thanks to the fact that Robert isn't having a tree this year, I was able to take advantage of his huge collection of ornaments.

It also meant a lot to me to have the party yesterday. I love all the work associated with giving a party: the planning, the shopping, the preparing, etc. However, doing all that work is beyond my energy threshold these days, so I merely planned it, bought the ham when I went for my blood draw the other day (the Honeybaked Ham store is right by the medical building), and made shopping lists for Holly and Robert. They did all the shopping and Holly prepped all the food and Robert made all the cocktails. And they did all this shopping during a driving rainstorm at places where they had to hunt for parking because it's the holidays and everyone's shopping for booze and food on the weekend. Robert also did all the cleanup afterward. My luck in friends is inestimable.

Della and Cito were as good as gold all day, and Della is suddenly a tooth factory. She now has four, when she had only one a week ago.


One of my favorite things about the evening was how Renecito and Alex hit it off. Alex read to Renecito for a long time from the books Kristene had given him, and Cito loved it. Alex is going to be a great dad someday.



I probably won't be posting for awhile, since I'll be busy enjoying this period of "wellness" before the next chemo infusion on 12/22. I hope everyone is having as nice a holiday season as I am.

Back to some semblance of normal... and a house project!

I didn't blog the last few days because it was the usual ugh crap, and we all know that story by now. I do believe the glutamine smoothies might be helping with the neuropathy, as it seems less noticeable this time, and I avoided nausea and vomiting by being very careful with my food intake this time. Sunday and Monday were the worst days of toxic-feeling, but yesterday was difficult to get through mainly because it was so frickin cold here. I could only manage a short walk.

Yesterday I attempted to start making my new roman blinds, but I only got as far as doing the rough length cuts on the lining blackout material, and then I had to give up in exhaustion, which was depressing, because I was left with my living room in major disarray (as you can see in this pic. The blinds I'm replacing are the ones you see in the window -- they're rotting on the other side), and not much headway on the project. However, I was rescued from despair by an evening drop-in from the Garcias. Della can stand unassisted or unsupported for quite a few seconds before her hips get all hula-like and she collapses. I predict she'll be walking by Christmas.

I have now slept two 10-12 hour nights of sleep in a row, and I think that helps as much as anything. I woke up feeling very good today, and have already set in to finishing the cuts on the blinds. I might even get to some of the sewing today.

In other news, the hair fall-out started again, and tired of dealing with the clumps, I shaved my head total cue-ball.

Checkmark by Chemo Round 4

Woo hoo! I'm two-thirds done with chemo. David, my favorite chemo nurse, posed with me today. Still only the bloating as a side effect, and it seems to respond to Gas-X, so I guess I won't need to poke myself with one of those pointed poles they use on gassy cattle.

Amy was my buddy today and she's such a good chatter, we didn't need a puzzle to divert us. Another former coworker that I haven't gotten to spend time with one-on-one in a long time, so it was very pleasant to catch up. She's one of the few people in the world that used to be able to refer to me as "my boss".

Anyway, I'm all prepared for the ugh. I'm hoping it waits a day or two since the rain has been put off a day or two. I hate to waste good sunny walking weather.

Chemo Round 4 - Day 2

Vicky, who knitted the cap I'm wearing in the pic, was my chemo buddy today. Unfortunately, they put us in a group infusion room where everyone else was alone, and two of them were sleeping, so we had to chat in hushed tones.

Other than the bloating, no side effects have presented themselves yet. I woke up very early this morning and took a long walk and am rigorously keeping to my small meals. Rain is due this weekend. Fortunately, I won't be wanting to go out much then, as the ugh should have hit by then.

Round 4 - Day 1

I was my own chemo buddy today and went on the scooter with my iPod and a book. David was my nurse today and told me some patients are able to prevent the neuropathy by taking glutamine supplements. It comes in a powdered form that you mix into a shake or a smoothie. Bodybuilders use it. He discussed it with Dr. Liu, who agreed it wouldn't harm me. He doesn't personally recommend it to his patients because there are no studies supporting its use to prevent chemo-related neuropathy. Since it won't harm me, and since there are abundant sources of glutamine powder in the Castro (lots of stores catering to the muscularly-inclined), I'll give it a go.

I was fine going to chemo by myself on the scooter. I just wish the temperature hadn't dropped 15-20 degrees over the last few days. I was freezing on the way home, notwithstanding all the layers I'd dressed in.

Now I can feel the bloat setting in. I've decided not to attend René's art show reception. It's too cold out and there will be too many people that might be carrying germs. I'll stop by and look at the art some evening soon when the gallery isn't quite so full and I'm not quite so germ-permeable.

Heavyweight Championship Round 4 *ding*

I left my camera somewhere (I think at the Garcias at Thanksgiving), so I had to dig around in my photo collection to find something to post with this entry. I took this picture on my way to work one morning last Spring.

Getting ready for round 4. First infusion tomorrow afternoon. Hoping I'll feel well enough tomorrow evening to go to the opening for René's new show at Project One.

Thanksgiving was fun and it was just what I wanted from the holiday and the gathering, but I wasn't exactly a live wire. Maybe the pie was a dish too far and I should have stuck to just making the cranberry dishes. It turned out well, but I was worn out by the time I got to the Garcias. Della and Cito's energy soon revived me enough to participate socially, in short spurts. The company was mellow and lovely and we had two adorable dogs to entertain and divert us as well: Holly's father's dog, Rocky, an Australian Shepherd, and René's sister's dog, Crystal, a long-haired blue-eyed dachshund. I kept having to take little chair naps during the day and evening. There were 10 of us for dinner. It seemed we had just the right number of dishes and most importantly, the turkey (cook: Holly) was moist and the gravy (cook: Robert) was delicious. After the side dishes came out of the oven, I made James Beard's cream biscuits (a really easy recipe that I highly recommend to anyone needing to make a quantity of biscuits), and I'm proud to say that Cito declared my biscuits and my smooth cranberry jelly his favorite parts of the meal. (Never mind that for Cito, "favorite" has a fairly flexible meaning.) I have to say my favorite food that night was the rumaki that René's sister Cathy made for cocktail hour. I'm just a sucker for bacon. Mindful of my need to eat small portions, but determined to get all my Thanksgiving food, I starved myself a little in the morning, sticking to toast and a latté. The strategy seems to have worked. I was ravenous by the time dinner was served, but I was able to have a full plate with little portions of everything, and so was quite content. I was sated, but un-bloated when I returned home on my scooter through empty city streets.

Friday, I loafed. Saturday I got ambitious and walked to the discount fabric store on Mission and bought 15 yards of fabric to make new roman blinds for my bay window and a new bed covering. I really want to get the blinds done soon because I want them up before I install my Christmas tree on the table in the window. I decided that for once, I didn't mind the bother of having my own tree and thought it would help me keep the season's cheer, especially since Christmas week is an infusion week. Robert isn't having a tree this year, so I can take advantage of his vast collection of lights and ornaments.

Sunday, I cleaned the apartment. As much as I dislike chores, it gives me pleasure that I'm still able to tend to household duties.

Yesterday, Robert and I went to the standard pre-chemo oncology appointment together. When I reported the nausea I had this time and that the neuropathy was about the same as last time, and that there are some permanently unreceptive nerve endings in my left foot, Dr. Liu offered me the option of taking a break from chemo, or expanding the cycle so that there are more weeks between infusions. He wants me to have maximum quality of life, even during chemo. I appreciate his making the offer, but I feel like I've girded my loins for this fight, and I want to plow through and get it over on schedule (mid-January). We know the chemo is working to an appreciable extent; the tumor has shrunk so that it's hardly visible or palpable anymore . Despite my spells of nausea and the neuropathy and fatigue, my body is tolerating the poisoning fairly well. I've only lost 4 pounds since starting chemo, and that could be due to my daily walks as much as to eating lighter. My HIV has continued to be managed by the antiviral drugs. I have an undetectable viral load and a high CD4 count. So, for now, my attitude is "damn the torpedos, full speed ahead". I'm no sissy when it comes to this crap. I earned my stripes with HIV.

Today I walked to Bi-Rite to buy all the little delicacies I like to have from there during the ugh time. The weather is turning. We still have clear blue skies, but I find I have to walk on the sunny side of the street to keep from feeling chilly during my walks. I don't think I've ever dreaded Winter so much or hoped so much for an early Spring.