Mom's having her wound re-dressed and I'm waiting in the parking lot for a call from Dad saying that it's time to come pick them both up at the ER entrance.
Mom's wound is simply super-irritated. She's to go back to the Xeroform dressing and must keep her leg elevated so as to avoid further pressure and friction. Inconvenient, but not tragic. About what I expected, but I'm glad we did this.
Saturday, June 27, 2009
Mom's having her wound re-dressed and I'm waiting in the parking lot for a call from Dad saying that it's time to come pick them both up at the ER entrance.
Sean came by just as we were pulling out of the driveway around 3:30PM. We left late because Mom ate lunch slowly (as we'd wanted her to do), from about 2 to 3, and I did dishes and washed up before we took off. As I wrote before, we didn't see the current problem as a dire emergency, but we did feel it was serious enough to warrant a doctor's attention. Where else to go on the weekend if not the ER?
As it turns out, the ER sees the situation similarly (i.e., things aren't dire), so Mom, Dad, Sean, and I are here in the waiting room, waiting for a proper berth.
This is our second time in the waiting room today: Mom had been checked in earlier and had been led to a triage station, where a nurse briefly looked her over and took some of her vitals. Mom's blood pressure was great (something like 108/60-something), and her pulse-ox was a stellar 99%. Her heart rate was around 90, but this is partly attributable to her walking around, an action that still requires effort. The triage nurse is the one who asked us to go back out to the waiting room; that now brings us up to date, as I'm in the waiting room, typing this.
Unless the docs discover something serious, I doubt this trip will end up being much more than an info-gathering excursion, a way to learn how better to take care of Mom's leg wound. Dad's worried about possible reinfection, which is a legitimate concern, given how much the color of the wound has changed. However, it's also possible that the darkening of the skin from pink to beet-red might be a natural part of the healing process for this sort of wound. Not knowing what's what, we're taking what we hope is the most prudent course. Given Mom's previous experiences with infection, we don't want to take any chances. Better to err on the side of paranoia.
We're a bit disturbed that the professionals all believed Mom was ready to go-- ready for showers, ready to sit on chairs and couches, etc. We were under the impression that Mom simply needed to have her wound dried-- just once-- with a blow-dryer set on "cool," and she'd be fine. As it turned out, her wound is leaking both clear fluid and blood (serosanguinal exudation), and Mom has been in obvious pain.
At a guess, this is what's going to happen tonight: Mom will have her dressings redone (Dad used nonadhesive dressings after Mom got out of the shower); her wound will be examined and pronounced non-critical; we'll learn more about how to dress Mom's leg and what dressings to use, and we'll be told to keep her thigh elevated so as to avoid any pressure against it. I'll be curious to hear how this will work when she needs to use the bathroom, as it's difficult to sit on that particular throne with one leg elevated.
I plan to ask about the possible utility of aloe vera, and whether a Bactine spray might help in any way. Sean is here, as I noted before, and he tends to ask intelligent questions, too. Whatever happens, we'll come away from this more knowledgeable than before.
Mom's had sponge baths since April 16, but today she had her first bona fide shower, and as far as her leg wound is concerned, it didn't go well. The bandage that the home care nurse had applied yesterday was extremely hard to peel off and caused Mom a great deal of pain, according to Dad. The shower's warm water eventually helped to strip the thing off, but Dad saw that the rectangular wound on Mom's thigh was now rimmed in black. I asked Dad what the black rim was, and he said "dried blood." Poor Mom vomited twice from the pain of removing the bandage; we're thinking about taking her to the ER if things look grim (to be honest, they don't: there's no further sign of infection). Dad, meanwhile, is going to apply non-adhesive bandages to Mom's leg. The plastic surgeon had felt that Mom's leg was ready for exposure to the air and that she would do fine with showering, but this doesn't appear to be the case.
UPDATE: I saw Mom's wound up close. No longer a raw pink, it has instead become mostly beet-red in appearance, and does indeed show blackness along its edges. It doesn't look infected, but we're taking no chances. Mom will be going to the hospital after she finishes lunch.
How Mom spent the rest of her Friday:
Promptly at 3PM yesterday, Mom underwent physical therapy, administered by yours truly, based on some photocopied sheets given to us by the therapist who had come by two days ago (she'll be back on Tuesday). Lots of leg-lifts and toe-to-heel rolling.
Pastor Jeri came by not long after and spent about an hour with Mom. (Pastor Kim had come by the other day.)
Around 8:10PM, I dealt with Mom's PICC line, giving her her evening dose of daptomycin according to the SASH protocol: saline, antibiotic (the dapto, in this case), saline again, then a heparin flush. Mom had forgotten that I had done this for her three times before, so she was initially worried about whether I knew what I was doing.
Not long after that, Dad came home and we all began watching the musical "Moulin Rouge" together. We were right at the part where Nicole Kidman's character, Satine the courtesan, was thrashing about in fake sexual ecstasy when there was a knock on the door: Pastor Jeri had returned, this time with a sumptuous bouquet she had received from a wedding party.
An interesting day, all in all.
Friday, June 26, 2009
We've been a bit worried about Mom's tendency to touch her various wounds, especially the raw area on the back of her left thigh. One consequence of Mom's tumor and various surgeries has been an increased preference for tactile stimulation: her fingers love to explore the world around her. At one point, this resulted in her dabbing at her leg with toilet tissue-- a big no-no, as the tissue can melt and become stuck on the moist surface. Even though the plastic surgeon declared that area safe for exposure to the air, it's obviously still very painful for Mom, and it still oozes. Even if she weren't dealing with brain-related problems, Mom would probably feel some urge to touch or otherwise pick at that area. I know I would.
The home care nurse who came by today said she would call Dr. Mirali's office to find out what, if anything, should be done about Mom's leg. Mom's head remains lightly bandaged, mainly to keep her fingers away from the incisions and to pad her head so that it's less painful when she wears her helmet. For the moment, Mom's leg is the only pressing issue. So far, no infection, and no other problems to report.
It seems that Mom's tastes have changed-- a natural consequence of all this activity in and around her brain. Mom's not as into spicy foods as she used to be, and she seems to have acquired a sweet tooth. At dinner last night, she enjoyed a mild Korean soup that had been thickened by rice until it was almost a juk (porridge). She then gobbled a simple dessert I'd made: fresh, spooned-out mango and vanilla ice cream. The remainder of the previous night's soup served as lunch today, but Mom didn't touch her spicy panchan (side dishes). Despite Mom's new preference for the milder and sweeter, she still seems to enjoy the usual list of Korean stews-- the various tang and jjigae she grew up with and used to make for us. These stews tend to be on the spicy side, but in the grand scheme of Korean fare, they're not the spiciest items on the menu.
I'm curious how she'd react to a meal that resembled the bland hospital food she'd been eating for weeks, but I'm not going to engage in cruel and unusual punishment.
Thursday, June 25, 2009
Both Michael Jackson and Farrah Fawcett died today. Mom had been watching the news, and I joined her during dinner to see both the NBC tribute and Access Hollywood's salute to Farrah.
I asked Mom what she thought of Farrah's death; she said, "Well... we all knew it was going to happen."
Today, June 25, is also a significant day for Koreans, who know it as "yuk-i-o," or six-two-five, the date of the start of the Korean War in 1950. People on both sides of the Pacific have reasons to contemplate mortality, I guess.
Wednesday, June 24, 2009
We're back from our visit to the neurologist. Dr. Benson saw a lot of improvement in Mom, especially in contrast to how she was during her most recent stint in the hospital-- weak, barely able to talk, etc. The doc did emphasize, though, that his role was to "bring reality" to the situation, to remind us that this particular form of cancer is aggressive and that, ultimately, the outcome will not be a happy one. He also asked us whether we were looking into experimental treatment options-- a question he couldn't have posed out of idle curiosity, since he's the doctor who told us about the spread of the tumor across the corpus callosum to the other side of Mom's brain.
I assume, therefore, that Dad and I will be talking, over the next few days, about eventually having Mom revisit MD Anderson and NCI. Dr. Benson made the common-sense remark that, whatever treatment route we take, it needs to be one that maintains quality of life as long as possible. Why bother seeking experimental treatments that will lead to nausea, loss of appetite, reduced cognitive ability, fatigue from traveling around the country, etc., if they do nothing to extend life and improve its quality somehow? We have a lot to consider.
All the same, Dr. Benson concluded-- after running Mom through the usual neuro checks-- that she has improved to a point where he doesn't need to see her for a few months. I had to go out and get the car while Dad checked Mom out of the office, but I think the next appointment has been scheduled for late summer or early fall. A lot can happen between now and then, especially with the specter of infection always hovering in the background, but it seems that Dr. Benson isn't counting on that being likely.
One final observation: Dr. Benson noted that Mom was having trouble following some instructions during the neuro checks: she would fixate on some element of the instruction to the exclusion of another element. For example, "Hold your head still and follow my finger with your eyes" produced a response in which Mom held perfectly still, using her peripheral vision to follow the doc's finger instead of moving her eyes.
The doc told us that this and other behaviors exhibiting fixation and repetition fall under the category of perseveration, and it's to be expected of someone with frontal lobe damage. Another example: when the doctor asked Mom about the respective ages of her children, she knew that I was 39, but when she turned to look at Sean, she struggled a bit and then said he was 39, too. It was obvious she knew this was the wrong answer: at one point she corrected herself, erroneously saying Sean was 33 (he's 29). The doc said that this situation likely wouldn't improve, given the nature of the damage, and that we should be patient with Mom, allowing her to move and think at her own pace, putting 2 and 2 together as she can.
For a sick woman, Mom seems to have a movie star's schedule.
11AM: Visit from two of Mom's Korean friends.
1:30PM: Leave for 2:30PM appointment with Dr. Benson, a neurologist assigned to Mom's case.
4:30PM(?): Arrive home.
5PM-ish: Visit from Pastor Kim.
A lot for one day.
Dad had a good laugh when my brother David came over last night. David is tired from working two jobs, but he always finds the energy to inject his bizarre sense of humor into a given situation. Last night, he opened his eyes wide and addressed Mom in a serious, stentorian tone, like a royal subject addressing his queen, booming, "What's new?"
Without missing a beat, Mom looked at David and fired back, "What else is new?"
Tuesday, June 23, 2009
Good news: the plastic surgeon, Dr. Mirali, determined that Mom's scalp and leg have been healing nicely. Mom therefore had her main stitches removed; the remaining stitches are designed to be absorbed by the body. Mom's leg can now stand to be exposed to air; no more need for a Tegaderm covering. We will still be applying loose dressings to Mom's head and leg, but only for Mom's comfort. he big news is that Mom can finally step back into the shower. No more freezing sponge baths!
Mom is now strong enough to get and in out of the car almost unassisted-- this includes the walk from the house to and from the car. She did great today going to the doctor's office and back, and not long from now, she'll be visited by two health care personnel: a home care nurse and a physical therapist. Things are looking up for the moment.
Mom has an appointment with the plastic surgeon today at 10AM. Later in the day, a home care nurse will visit. Here's hoping that Dr. Mirali thinks that Mom's scalp is making progress. From what I've seen, all the wounds still appear clean and uninfected.
Monday, June 22, 2009
Mom's still doing well. Her daptomycin pushes are happening more or less on time; she's eating more at meals; her balance, strength, and coordination continue to improve; her conversational ability is becoming more extensive as her active vocabulary returns.
Yesterday, Mom had quite a few visitors stop by in the afternoon. This made her day, but it also tired her out: she was asleep before dinnertime, and missed the huge meal that I and my brothers had prepared for my dad. Mom's friend had brought over jjajang-myeon for us, but no one ate it: I had already planned to make yesterday's dinner, and Mom, who would have preferred Korean food, was zonked out. (The noodles will serve as lunch for Mom and me today.)
Today, no nurses will be visiting Mom, and we aren't taking her to see any doctors. Nurse visits are Tuesday, Wednesday, and Friday; doctors' appointments are Tuesday and Wednesday this week. Today, Mom can relax.
I'm planning on mowing both lawns today; I'll start after lunch. It promises to be an all-day project, mainly because our mower is the type that shoots clippings into a sturdy attachable bag. This bag, which isn't very big, requires frequent stops in order to be emptied, thus increasing the amount of mowing time. Because of the rains lately, I haven't had a good chance to attack the front and back yards in weeks, and it shows: our many weeds (normal grass is hard to find) are taller and more lush than they should be. I imagine I'll be working until close to dinnertime.*
Dad says he might walk Mom out onto the deck to watch me work. I think it's a good idea to get Mom out and about. Her only other big projects today are (1) getting her head and leg dressings changed, and (2) getting her 8PM daptomycin push.
Right-- I'm off to make lunch and tame our greenery.
*Way back in the old days, our family had a different mower-- the kind with no bag. I didn't realize it then (I was in junior high), but such mowers get the work done a lot faster, as all you have to do is push. The main disadvantage is that, if the mower blade happens to bite into a random stone, the stone is likely to fly out from under the mower, zinging dangerously off to who-knows-where.
Sunday, June 21, 2009
I wrote my French friend Dominique back on April 19 to tell him about Mom's brain cancer and about the upcoming operation (April 21). What he wrote on April 20 is relevant to Father's Day:
les nouvelles ne sont pas très réjouissantes chez toi. il y a quelques années (peut-être 10 ans), une tante de Véronique avait une tumeur au cerveau. C'est toujours inquiétant lorsqu'on parle d'un problème au cerveau. Sa tante a été opérée et va très bien aujourd'hui.
Nous pensons bien à vous tous et embrasse ta maman de la part de toute la famille (et de ma part en particulier!). Prend soin de ton papa aussi, quand Maman avait son cancer parfois j'avais l'impression que c'était Papa le malade car tout le monde demandait des nouvelles de Maman, Papa se retrouvait parfois un peu seul, fatigué par le stress, le manque de sommeil, embrasse-le aussi et dis-lui qu'on pense à lui.
tiens-nous vite au courant de la suite
à très bientôt
The news isn't very happy where you are. Some years ago (about 10 years), one of Veronique's aunts [Veronique is Dominique's wife] had a brain tumor. It's always worrisome when it comes to brain-related problems. Her aunt was operated on and is doing very well today.
We're thinking about all of you; kiss your mom on behalf of our whole family (especially me!). Take care of your dad, too. When Mom had her cancer, I sometimes had the impression that Dad was the one who was sick, because everyone was asking after Mom, and Dad found himself somewhat alone, tired from the stress and from lack of sleep. Give him a kiss, too, and tell him we're thinking of him.
Keep us current as to what happens next.
Talk to you very soon,
I don't know how good of a son I've been toward my father, but I and my brothers appreciate his love and care more than words can say. Dad is the one keeping track of Mom's meds and medical records. He's the one making sure the living room is prepped with medical supplies when the home care nurses show up. He's the one handling most of the phone calls from family friends, and he's the one who steps up to arrange all the doctor appointments. He works alongside me to take care of chores like yard maintenance, dish-washing, floor cleaning, and so on-- all without complaint. Dad is quite literally the first responder should anything happen to Mom during the night: I sleep downstairs in my dungeon. I can only imagine how hard all of this is for him as a husband, watching this terrible thing happen to his wife. Dad has thanked me repeatedly for staying home to help out instead of continuing my walk; I don't think I've thanked Dad nearly as much, if at all, for everything he's done.
Today, I'm making Dad a nice dinner and dessert. One of Mom's Korean friends is also visiting today, around 3PM, to see Mom. Other things are in the works, but we're keeping it simple-- a simple "thank you" for a man whose heart is always, always in the right place.