Enchiladas with salsa verde and a side of tantrums

Wednesday, February 10


Tristan and I are at Family House, this time in a new room on the fourth floor that has twice as much room as the identical, vertically-stacked rooms in which we usually stay — 203, 303, or 403. On entering the new room (after I automatically tried to jam my key into the lock on 403 to the confusion of an elderly Mr. Carl), Tristan was oddly ecstatic at the closet space. “Mom, look at the tozzit!” We had a smooth drive down to the city, with a stop in Ukiah for lunch with our good friends Peter and Laurel. In the Sunset District, we got a good parking spot less than a block away, so I didn’t go back to drop our luggage at Family House before widening my search for parking. I have a system now for pushing the jogging stroller with one hand, hanging my purse and the diaper bag from my shoulder, and dragging the rolling suitcase with the other hand. Judging from the confused looks I get, I only look partially homeless. I can see the wheels turning: Look at that poor woman dragging all that crap around. She’s got a bald child and all of her belongings with her…but that’s a high end B.O.B. stroller, and that’s one of those decent suitcases with the Swiss symbol on it…??? Maybe she’s recently homeless? Looks like she’s adjusting well.

What a week at home! Action packed. Stuff never stopped happening. I arrived home last Wednesday, the 3rd. Thursday and much of Friday were a flurry of preparation for Phoebe’s birthday, the celebrations of which were to extend for three consecutive days. The girl knows how to party. Friday afternoon, the school bus / chauffeured Kneeland kid taxi service dropped about twenty kids at the top of our driveway. They tossed their bags and gifts into the back of my car and sprinted down the ⅓-mile driveway to our house, where they proceeded to be awesome mountain kids for almost three hours. They played on the zip line, kicked soccer balls in the horse paddock, hit baseballs, hid in the secret space under the stairs, and all but hung from the rafters. Now that I think of it, I think some did hang from the rafters. (I’m considering attaching a liability waiver to the next set of birthday invitations.) We played a birthday game with prizes, had cake, and opened gifts. No major tantrums were thrown, so I consider it a success.

After the party was over, I left Gary drinking wine with the last few moms who were there to pick up kids, and I drove down the hill to join Tristan, where he was sequestered safe from kid germs at my parents’ apartment in Eureka. My brother and his wife had arrived for the weekend, and we had a mellow evening together while Gary managed a sleepover at home with two of Phoebe’s friends and one of Tomas’ friends.

The following morning, while Gary made chocolate syrup-filled crepes for the kids and reassembled the house, I got ready for the Clam Beach run, an annual race from Trinidad to Clam Beach. I ran the 8.75-mile race (not racing, just plodding steadily) with two Kneeland friends, and I had a great time. So great, in fact, that I had happy running dreams for the following two nights. Endorphins or exhaustion-induced psychosis? Dunno, but I’ll take those fabulous dreams over my other recurring dream in which I’m told I need to write JUST ONE MORE chapter before I can be finished with my dissertation. That is NOT a good dream.

photo 2 (26) - Edited

My parents, Chris and Agi, and Gary and the kids met me at the finish line. After enjoying the crazy scene — the bonfire, a marching band, and goofy college kid joggers in diapers — we headed home to Kneeland for a family birthday celebration for Phoebe. Champagne and cake were consumed, additional gifts were bestowed on Ms Pheebs, and eventually we all collapsed into bed.

On Sunday I took Phoebe to have her ears pierced, her birthday gift from Gary and me. She was so excited, and so tough, with barely a wince at the moment. She’s thrilled with her pink earrings and has been carefully applying her medicine three times a day.

Finally, over the last few days Gary and a skilled carpenter friend assembled an outdoor playset that we purchased with a grant from a foundation that provides play equipment to children with cancer. Tristan is in heaven with the slide and fort and swings, and Tomas and Phoebe are equally happy. The construction of the set coincided with incredible summer-like weather, and the kids were outdoors after school until nightfall both Monday and Tuesday. It was all so…normal, if Tristan’s head wasn’t fuzzy with new chick down I might have forgotten that we’re not done yet.

Friday, February 12th

Tristan and I just arrived home. There were some really good parts to our trip to the city, and some really bad ones.

The latter first. Tristan threw a gale force temper tantrum at the clinic yesterday. The biggest ever at the clinic. In fact, the biggest EVER, period. As soon as I put the numbing cream on his chest, he screamed in my lap for 25 minutes. Eventually he crammed his furious little body behind one of the La-Z-Boy chemo chairs and continued his ranting for another 25 minutes. Dr. Sabnis, our primary doctor at UCSF, skillfully completed his examination of Tristan in that position, wedged between the wall and the chair. Tristan’s honest feelings about having his port accessed thus demonstrated, Dr. Sabnis thoughtfully suggested that, once Tristan enters Maintenance and his doses of chemo are lower, we might consider doing it via IV in his arm and abandoning the port. Um, ok! Again, I left the clinic completely tattered.

On the upside, we had a pleasant stay at Family House on Wednesday night. Remember Ivan, the young man with ALL to whom Tristan attached himself a month or so ago? Ivan’s mother fed me a gigantic plate of steaming enchiladas smothered in homemade salsa verde for dinner, therein sparing me from Rice-A-Roni or Mac ‘N Cheese scrounged from the Family House shelves. Then, Thursday morning, Rita, the Mennonite granny we befriended a couple of weeks ago, who is now staying with her daughter at a facility for recovering transplant patients, brought her granddaughter Kylie to Family House for a visit. At the clinic later, Tristan and I met up with Noah, the little boy who just suffered a relapse of ALL, and his mother. Despite Tristan’s tantrum, I had a good visit with Susan there, and we then ended up spending the night at their house in Mill Valley last night. Poor Noah is suffering all of the worst side effects of powerful chemo — mouth sores, nausea, everything — but it was good to spend time talking and drinking wine with Susan. Tristan had fun, loved the dinner Susan made, and built Lego with Noah’s big sister.

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It’s crazy that in all of this horror there are things that are so…enjoyable. I have met a bunch of people I really love. Interesting, colorful, smart, kind people who are going through all kinds of shit with grace and strength. I never would have predicted that, through this leukemia nightmare, I’d end up with an assemblage of special friends. Also, I value and absolutely LOVE the time I have with Tristan (excepting port-access tantrums). I’ll be happy when this is all over, but I think I’ll miss, maybe even grieve the loss of, these one-on-one, two-day sprints to San Francisco and back. It’s positively sweet to get to Family House, push the twin beds together, and cuddle up with Tristan to read books or watch Netflix. Gary, too, has had a similar experience at home with Tomas and Phoebe.


Two more trips to the clinic over the next month before Maintenance…

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