Saturday, July 18, 2009

crevettes out the wazoo

Many thanks to Cheong Burns for the load of freshly steamed shrimp (perfectly steamed, by the way), as well as for the box of Korean grapes. Most delicious.


a slow start to the weekend

I was up around 8:30 this morning, but poor Mom didn't feel like getting out of bed until after noon. By that time, Mom's first visitors, Pastor Kim's wife and son, had come and gone, leaving a wonderful lunch in their wake. The Missus had prepared a double whammy for our lunch: marinated Korean short ribs off the bone, which required only a quick broil to achieve perfection, and the ingredients for bibim-bap (roughly, "mixed rice"), with the red pepper sauce kept separate so that Dad could eat the rice and vegetables without setting fire to his mouth. The short ribs disappeared quickly, and we have enough leftover vegetables to garnish dinner.

Dinner is arriving this evening from another friend-- Cheong Burns, who's coming over at about 6PM. The rumor I heard is that Mrs. Burns is preparing steamed shrimp, which sounds muy delicioso to me. Mom hasn't really prepped for visitors; Dad's going to help Mom wash in a bit, and we hope she'll be ready by 6. If she isn't, well, it's no skin off our noses. We're having a slow weekend. Might as well enjoy it.


let the games begin!

Dad is out giving blood and dropping off a set of thank-you cards at the local Home Depot; I'm home monitoring Mom, who's still sleeping (she often wakes up close to noon). Mom's got a few visitors coming today, starting at noon and moving on through dinnertime. Visits usually tire her out, so I imagine she'll be sleeping like a rock tonight. Tomorrow, she and Dad are off to Cove Point (Lusby, Maryland) to see Mom's friend. I hope the weather holds up. Tomorrow's forecast for Lusby looks good.


Friday, July 17, 2009

food, glorious food

Many thanks to Vance and Libby Morrison for stopping by with a load of food for dinner (and, quite possibly, several meals beyond!). We appreciate their visit, as well as the kind efforts of the Congregational Care Council, which has scheduled these weekly drop-offs.

I have to apologize, though, because I keep forgetting that Friday is the drop-off day, and I often end up prepping dinner. This isn't a huge problem: I simply need to mark Friday on my calendar as a special day. I'll get things right eventually.


not very verbal

Dad took Mom to her radiotherapy treatment today (as he did yesterday), so Sean and I drove over to a chain store in Fairfax called Wegmans, which sells groceries and specialty products for a decent price. When Sean and I came back from shopping and saw Mom again, she was completely nonverbal. After some prodding on our part, it became clear that Mom had something in her mouth-- fish, as it turned out (I discovered this only after Sean and Dad had left the house). This is, again, another example of perseveration: Mom had chewed the fish, but instead of swallowing it, she had kept it in her mouth like chewing gum. I hope you don't find this image too gross, but truth be told, I found it a bit funny, if for no other reason than that Mom's taciturnity had nothing to do with a new cognitive issue.

In other news: Mom is going to be inundated with visitors tomorrow. I need to check with Dad, but I think she's got at least three different visits in the works. Then, on Sunday, Dad and Mom will be heading back out to Lusby, Maryland, to visit with Mom's friend at her Cove Point beach house (doesn't "cove point" sound oxymoronic to you?). A busy weekend ahead. I'll probably spend my Sunday either sleeping or trying to catch up on a mess of long-neglected transcripts.


Thursday, July 16, 2009

so it went like this...

According to Dad, Mom's 9:30AM appointment ran until about 10:15AM. Dad had apparently called the radiology department last night about rescheduling Mom for an earlier time; he and Mom went to radiology after the visit with Dr. Leiphart and snagged a noon radiotherapy appointment. Dad and Mom hit lunch after that, then came home. Dad went right back out to perform some errands. He's home right now (4:30PM), but is going out again to do more errands while I watch over Mom.

When Mom and Dad were out, I managed to get the laundry done, and also mowed the front lawn. When Dad went back out, leaving Mom home with me, Mom started puttering around the kitchen, ultimately spending two hours obsessively wiping the counters and the sink. She also did a few dishes, but because of her perseveration (a mental tendency to linger over or repeat ideas, utterances, and actions), she left the water running a long, long time. I'll have to do a better job of curbing some of Mom's stranger tendencies.

Dad's heading out to do more errands, and I need to start thinking about what's for dinner. We're finally done with all the hot dogs and hamburgers, and we just finished off a major load of salad.

Ah, yes-- Dr. Leiphart. He's apparently happy with Mom's healing, and he wants to see her again on August 13. Mom is supposed to finish up her daptomycin regimen at the end of July; her radiotherapy is in full swing, and the chemotherapy is supposed to start sometime in early August, if I'm not mistaken. Dr. Leiphart answered a question I had about the phase shift in Mom's chemotherapy schedule; as you'll recall, I had wondered about what was to be done, now that the two therapies are no longer in tandem. The answer is that Mom will not make up the chemo she's missed. In other words, she'll resume chemo in early August, finishing it up in tandem with the radiotherapy. Dr. Leiphart believes that Mom's chemo can't be made up as if it were missed coursework. When radiotherapy ends, Mom will have her one-month break, but during that break, she'll have her new synthetic bone flap put in.

I hope we speak with Dr. Meister about all this. I'm vexed that Mom is being deprived of her full chemo regimen. The doctor's rationale, according to Dad, is that giving Mom the full six weeks of chemo will be ineffective because it won't be happening in conjunction with the radiation-- the two go together. But if that's the case, then (1) why is Mom supposed to take the Temodar over the weekend, when radiotherapy doesn't occur, and (2) why will Mom be taking Temodar for several months after her one-month break? The doc's answer doesn't make immediate sense to me, which is why I need some clarification. I'm not pretending to know more than the doctor, but as things stand, the information I have doesn't add up to a coherent picture.

Aside from the above concerns, though, it appears that Mom is back on track, therapy-wise. I imagine she'll have her PICC line removed at the end of July or in early August, once the daptomycin regimen is finished. It'll be nice not to have to tiptoe around Mom's right arm all the time.


...without yours truly

Mom went off to her appointment with Dr. Leiphart without me: Dad's acting as Mom's chauffeur and on-the-road caretaker today, for reasons I don't feel comfortable mentioning in public (don't worry: it's not internal family conflict). I doubt that Dad and Mom will be returning from the appointment to spend a bit of time at home; Mom has her regular radiotherapy appointment at 2PM.

I, meanwhile, am taking care of some laundry and mowing the front lawn. It's a hot, humid day, with a chance of rain. Lovely.

More later.


Wednesday, July 15, 2009


Tomorrow, Mom's going to be out for most of the morning and early afternoon, as we have to take her to a 9:30AM appointment with her neurosurgeon, Dr. Leiphart. One thing we'll be wanting to ask him is whether there's going to be any effort to get Mom back on an in-tandem routine: per the doctors' orders, she still hasn't restarted chemotherapy (Temodar). I'm worried about this because, according to the original treatment calendar, Mom was supposed to have a month off from both treatments. As things stand now, Mom is about a week ahead with radiation. Will this mean that Mom will have only three weeks' rest before the resumption of chemo (radiation ends after the initial six-week treatment period), or will she receive a full month of rest, thereby distancing her from the last day of radiation treatment before she resumes chemo? Perhaps Dr. Leiphart can help us in this matter, or maybe he can refer the question to Dr. Meister, who's in charge of Mom's chemotherapy.

We also need to start thinking about taking Mom back to MD Anderson and NCI so that those facilities can take their respective MRIs. The plan was to do this during Mom's one-month break from therapy, but we need a clearer idea of the treatment calendar before we can take Mom anywhere.

Mom's also got her regularly scheduled 2PM radiotherapy appointment, so we'll be tooling about the area for a few hours, and won't be back home until mid-afternoon.


while I was at home

Mom went to the hospital without me today: Dad drove her. As before, she was in and out in a flash. Because we're still at the beginning of the radiotherapy calendar, Mom hasn't shown any ill effects from treatment. We've been told to expect such effects (fatigue, hair loss, etc.) around Week 3, i.e., about two weeks from now.

Mom's appetite seems to vary from day to day. Yesterday, she was voracious, eating both a large lunch and two substantial dinners (she often wakes up too late to eat breakfast). Today, she hasn't eaten much lunch at all, and I suspect she won't be wanting much for dinner, either.

Meal prep remains an interesting part of my day. My role as the house cook is well described by the Marine Corps mantra I heard in Clint Eastwood's "Heartbreak Ridge": improvise, adapt, and overcome. I follow the vagaries of Mom's appetite, suss out what she's in the mood for, and adjust her menu accordingly. The same goes for Dad, who seems happy to eat a steady diet of bland cold-cut sandwiches. Were Dad left to his own devices, his menu would never change, and he'd be fine with that. I try to change things up as much as I can, but Dad's and Mom's tastes rarely coincide when it comes to food, often resulting in the need for two completely different menus.

Such is life. Improvise, adapt, and overcome.


how to help Mom

I should write a book and sell limited-edition copies of it for $1000 a copy. Ted Kennedy, who has the same type of tumor as Mom, is doing just that, it seems.


well, well!

An American friend of mine, who lives and works in Seoul, just wrote to say he got married in Manila to the Filipina love of his life. Tom shuttles back and forth between Korea and the Philippines, so I'm not sure whether he's planning to uproot himself from the hustle and bustle of Seoul life in order to take up residence in Manila or somewhere else in the Philippines. I wish Tom and Sherny the best, whatever they decide to do.


Tuesday, July 14, 2009

Bonne Fête!

J'aurais dû écrire tous mes blogs en français aujourd'hui-- c'est le 14 juillet, après tout. Mais au lieu de faire ça, je me contenterai de gribouiller cette petite note juste pour dire "bonne fête" aux Français qui célèbrent ce jour.



itchy hands

Today, we arrived at the hospital about the same time as we did yesterday, but we left around 2:15PM. I was sitting in the waiting room, facing away from the hallway that Mom usually pops out of, when Mom was led out by a nurse. I didn't know Mom and the nurse were behind me until the nurse called out, "Son!" --not knowing my name. It occurred to me that I had actually heard the nurse talking right before she'd called out son, and that's when I realized the nurse had asked Mom what my name was. Mom either couldn't or wouldn't say. Perhaps she hadn't understood the nurse's question, which is why the nurse ended up addressing me as "son."

Mom's been walking around the house a bit more these past few days, and her hands are all over everything. She walks into the kitchen and often tries to clean things up as she can, but she needs to be supervised: she'll wipe a surface with her hands instead of using a cloth, or she'll try to wipe the interior of the kitchen sink with a dishcloth. Yesterday, she saw a pan full of strawberry sauce and she tried to scoop it into a plastic container full of mi-yeok (a type of seaweed). I stopped Mom in time, and she exclaimed, "Oh, what am I doing?" It's amazing how compartmentalized the brain can be-- one part can realize that another part is doing something wrong.

Right now (4:30PM), Mom's sitting and talking with Pastor Kim, who's visiting. As has been true for at least the past week, she seems to be conversing on more than a rudimentary level. The exchanges remain fairly basic, but now Mom is able to elaborate on her initial thoughts. We celebrate what progress we see.


off soon

Mom received a visit from the home care nurse this morning. The nurse re-dressed Mom's PICC line (this is done weekly) and performed her usual battery of checks. In all the hubbub, though, Mom apparently didn't eat any breakfast. When lunchtime came around, Mom was hungry, gobbling everything in front of her.

We're off to the hospital in a little bit. Dad's napping, so Mom and I might sneak off without him.


Monday, July 13, 2009

an inside glimpse

I've been hesitant about showing my readership some of the more candid moments that have been immortalized by our cameras, but in reviewing some of the pictures Dad has taken (his camera contains hundreds of photos that he apparently hasn't downloaded to his hard drive), I found a few that might give you, Dear Reader, some idea about the cast of characters swirling around us as this cancer drama unfolds. Two of the photos also show you how Mom looked until recently, with her head heavily bandaged. The fourth photo, which shows Mom gingerly gripping a baby's hand in one of her own, choked me up a bit: it says so much about where Mom is, mentally speaking. Mom can no longer express complex thoughts; it's quite possible that she is no longer capable even of entertaining such thoughts. She is, however, still able to respond properly to the simple things in life. She no longer does so with the same light that used to inhabit her eyes, but in a sense, the light is still there, visible in her outreaching hands.

The first photo is of Maqz, Sean's chihuahua, dozing blissfully in a sunbeam. Maqz has been a part of Mom's life for a few years, now; she loves that dog. It's a shame that she hasn't seen Maqz since early May, but our caution about infection has played a role in Maqz's absence. At some point, though, we do want Maqz back in the house.

The second photo is of my i-mo (pronounce it "ee-moh"), i.e., Mom's big sister, who left the Houston area to visit us for two weeks. She'll be back here again sometime soon, I think. I've written about my aunt before; she's one of the major characters in this story.

The third and fourth photos show Mom with one of her oldest friends, the lady whom we kids always knew as "Miss Lee ajumma." Even after all these years, I still don't know her given names. That's true for a lot of Koreans, who address friends and relatives by using titles as a sign of respect. The baby is Ziggy, Ajumma's grandson, the son of her second daughter. Also shown in the final picture is Ajumma's youngest daughter.

I hesitated about showing the pictures of Mom, but the way that these images pulled at my heart impelled me to share them with you. They're just moments, of course-- here and gone-- but they retain a certain quiet beauty. Kudos to Dad for taking such great shots.


views of the completed ramp

Here are six views of the completed wheelchair ramp. Enjoy the rigorous perpendicularity, the subtle sloping.


done in a flash

Today's trip to the hospital went by so quickly that it was almost as though we hadn't even gone. I left home with Mom at 1:07PM; we drove through decent traffic and arrived at the hospital at 1:38PM, walking into the radiology department around 1:42. At 1:50, a staffer came out with a wheelchair for Mom and took her back for her treatment. By 2PM, Mom was done-- poof. We checked out and were back on the road by 2:05PM. Incredible.

Fairfax Hospital has done this before, I noticed: they'll sometimes take a patient early if they have the time to do so. That's a very good thing, in my opinion, and I thank the hospital for taking the opportunity to be more than prompt when it can be. I know there'll be days when treatment will occur late, but thus far, after four treatments, Mom has started and finished early 50% of the time. Not a bad track record.


...and away we go again

Mom and I will be leaving for the hospital at 1PM again today. Dad has a 2PM dental appointment, so as happened this past Friday, it'll be just Mom and me in the van.

Thanks again to all the people who helped us out, physically and emotionally, this past weekend: Ruth Guirard and Mrs. Kopf, Pastor Jeri and Bill Keezer, the MVPC team and the Home Depot team. The previous blog post is a tribute to the ramp builders; as you'll see, there's no photo of the completed ramp. I'll slap that up later today, along with a few other photos I stole from Dad's camera.


Sunday, July 12, 2009

many thanks

The following pictures of yesterday's wheelchair ramp construction are brought to you by Dad. On behalf of our family, I'd like to thank the following folks.

From Mount Vernon Presbyterian Church:

Mike Frady
Don Dickstein
Bill Kennedy
Eric Frady
Nat Wheeler
Pastor Jeri (who watched over Mom and ran a hardware errand)

From the local Home Depot:

Tony Barnett, manager
Alvin Hughes
Bryan Thomson

Watching the wheelchair ramp's progress throughout the day was impressive. The above-pictured guys (plus Mr. Barnett, not pictured) worked all day in the heat and humidity to complete the project, and the end result (which I tested by riding a wheelchair down the ramp myself) was marvelous.

My thanks as well to Pastor Jeri, who played a major role in getting Mom out of her hiding place inside the house, so that Mom could watch the project firsthand. That was, for me, a major turnaround. At first, Mom hadn't wanted to come out at all, so self-conscious was she. But there she was in the afternoon, first leaning against the deck railing with Pastor Jeri, then sitting on the deck in a folding chair, magisterially surveying the proceedings. Quite a sight.

Special note: Dad not only helped me with the cooking by baking two cakes and doing all the grilling: he also helped the workers as he could. Paying everyone back by feeding them was the least I could do. I'd also like to offer a long-distance thank-you to Bill Keezer, who wrote this tribute to our family.

Thank you. All of you.


late risers

Dad says he woke up at an uncharacteristically late 8:50AM today. I woke up around 9:30AM, but didn't get out of bed until sometime after 10. Mom didn't get out of bed until close to lunchtime, and she doesn't appear too hungry at the moment: she ate only part of her lunch. We don't force her to eat, but at the same time, we worry that she isn't taking in enough nutrition.

Mom's leg seems to be doing better. When she wears white pants (as she often does), we occasionally see spots on the back of the left thigh where the harvest site has been weeping a bit, but over the past week, these spots have become increasingly rare. That's another reason why we want Mom to keep eating: the nutrition helps her heal. (Because Mom ate so little for lunch, we're giving her vitamins.)

We're all moving around a bit sluggishly today; Dad's back is hurting him, and even though I had the luxury of staying indoors while everyone worked, I'm still a bit tired from yesterday's food orgy. My brother Sean is here right now, but he'll be leaving soon to play in a opera-- one that was just composed, libretto, music, and all.

I'll be back later today with some pictures of yesterday's project, which was indeed completed by evening. A tribute post is in the works.