Monday, February 28, 2011
Perhaps I am delusional? It's crossed my mind several times in the past two months-Magical Thinking, refusals to accept help from loved ones, then accepting too much...and now today, a conversation about enteral feeding. I'm a nutritionist, for god's sake. Have I just turned a blind eye to the amount Mom's been eating? Has it just improved so much from those first days in the hospital when her pain wasn't managed or since chemo days where nothing stayed down? The fact is that she's not eating enough. She is eating good calorie dense foods: today guacamole, other days eggs, cheese, meat, but it's not enough. Three bites of guacamole will not arrest the weight loss. So today, we had a sit down about tube feeding. Of course, that's a last resort and we don't want to have to go there. But if these weeks without chemo can't be used to recuperate and eat a lot, we're going into chemo in an even more weakened state.
Just an aside, proving the delusions again-I always say "we" like I have any ownership in this process. Like I've also lost my hair, my appetite, my strength, faith in my body...I know it must annoy her to no end to hear me say "we" like that.
Anyway, weakened state. We're hoping to meet with the oncologist early next week to discuss the nutritional deficiencies at length and see what he thinks about the possibility of surgically implanting a tube in Mom's stomach. And also if he's as concerned with her weight loss and low blood protein counts as the KGH staff is.
After the discussion today, Mom made a considerable effort to eat more than she wanted to. When she's motivated, she can override her inclinations; she really really really doesn't want to do enteral nutrition. So now it's just a wait and see game to determine if she can maintain that drive and realistically double her food intake over the next week. We're stocked with calorie dense foods over here and are hoping that maybe she'll gain a pound or two soon.
Sunday, February 27, 2011
Saturday, February 26, 2011
Mom seems to be okay without the morphine! She skipped her morning dose and has been comfortable, pain-wise, without it. Her stomach was giving her some problems today, but finally resolved by late afternoon, so now she's focusing on catching up on rest and relaxation. Hopefully even cutting her morphine dose in half will help with the unpleasant side effects and keep her as comfortable as possible.
I am catching a cab to the airport in 5 hours, so please forgive the brief update. Just know that things continue to be stable, which no one can really complain about.
Friday, February 25, 2011
Things continue to move in the right direction. Mom is eating like a champ and exercising hard. Today it was decided that she's going to start taking her morphine only as needed, instead of every 12 hours. She said that she's not really in pain; she has some stomach discomfort, occasional aches and the feverish shivers are uncomfortable, but no real pain that needs to be addressed. Of course, she might not have pain because she's on morphine all of the time. But we're going to see how she does without it. It's causing some more unpleasant side effects, so it's worth it to try to go off. She can always start up again.
Things have steadied out to a different energy again-we're not all in emergency mode. And coming into the weekend, with me coming back into town on Sunday morning, I think Dad is able to relax a little bit (I hope). Though I wonder what will happen once we all let our guards down a bit, if we allow ourselves to turn off the Fight or Flight mode of operating. I suspect we'll all get colds or the flu or oversleep five days in a row. As it is, we're all still a bit too wound up to let that happen. I've been telling friends about how intense the past two months have been and how Dad hasn't really slept since mid December and everyone has a story about how they defied and overrode their biology to power through something that was necessary. Most often it's school exams, but definitely caring for loved ones falls into those categories. I have friends with small children who haven't slept more than 5 hours in a row in years. They manage. We all do.
Someone emailed me that God never gives us more than we can handle. Now, I'm no Believer and I don't think we're gaining strength from anything as sentient as a God. But I do believe in prayer. I think that love is powerful beyond measure. I think that if we choose to, we can dig down deep, and deeper still, and find continued strength within ourselves. And if we find it lacking, we can accept it from others who share it. I think it's renewable and chargeable and continually growing on itself. It we go into despair, it will consume us. So too will hope. So that's my wish for my family, and for everyone who so generously keeps us in their thoughts and prayers. May we all be consumed by hope.
Thursday, February 24, 2011
More of the same. Mom continues to sound great on the phone. We speak about twice a day to catch up on both of our daily events (walking, pill taking, visitors vs work, acupuncture and training). Often I catch her in the midst of a snack or a meal; she's having a much easier time eating the last few days and seems to have a bigger appetite. Other times I catch her during pill time, which is always arduous, but she plows through. I don't have a real sense of how she's doing, it's impossible to know being far away. I plan to give you all a much more in-depth look on Sunday after spending the day there. In the meantime, just know that she's continuing to gain physical strength, today walking 20% more than yesterday, and her emotional strength is as ferocious as ever and shows no sign of diminishing.
Wednesday, February 23, 2011
I find myself counting days a lot. Four days until I go home. Thirty one days until I get married. This is a completely self indulgent practice and one that is not healthy for me. For two months now, people have been taking me aside, in person and in email, and giving me encouragement and permission to take care of myself, take time for myself and do things I want to do. Not that I needed any encouragement for this-as soon as my dad called me in tears, "should" flew out the window and I've been doing whatever I want to do, whenever I want to. Which means waking up at 6am every day to work out, then taking another workout break in the middle of the day. It means eating chocolate with breakfast, lunch and dinner and every snack. It means working six days a week, minimum, and refusing to even pretend that I'm going to do my own laundry. It's constantly living in the future, losing the struggle to stay present, and counting days until. If I don't nip this in the bud...okay, too late for that...if I don't cut off the vines of this growth, I'm going to completely miss out on my life. People have been treating me as if I'm excited for the wedding and I can't even fathom for a minute why I would be. Gary finally staged an intervention last night and insisted I figure out how to enjoy it, or he was going to get on the phone with the amazing Seattle support crew and ask them to take care of everything.
So, today. Today is a day that was lived, both by me and my mom. I woke up early to run 5 miles while Mom worked hard to sleep in. She did sleep well last night, and then exercised hard today: she went walking down and back a very long hallway-her farthest walk yet. She made an effort to eat a lot today, even asking Ross to bring her savory snacks from the Taco Truck to add fiber and calories to her dinner. I did my regular dance between "I should really try to lose a few pounds before the wedding" and "Mmmm, chocolate" and, of course, ended up as I always do: eating tons of veggies and lean protein and an entire bar of 85% chocolate. Mom's been successfully fighting her infections-her white blood cell counts are back up closer to where they should be and she's feeling well. We're guessing she'll start chemo again the week after next, so maybe the week of March 6th. I don't know when we'll know the date for sure, but now that we know she's responding so well to it, I think it's a little easier to take. The nausea, fatigue and weakness seem less scary and more worth it. Mom's attitude has shifted since the CT scan results. And she had a positive attitude to begin with! But now there's really attainable progress to be made, and she's set her mind to attaining it. And really, attitude is everything.
Tuesday, February 22, 2011
Another magical date-look at the numerical symmetry! And Mom had a good day. When I asked her how she was feeling, she said she was feeling good. I haven't heard her say she felt good since the middle of December. I know the break in chemo isn't great as far as the Cancer Fight Plan, but it's so great for her to get a reprieve. She has her appetite back, her stomach isn't upset, she can swallow...all such good things. Today she had her first physical therapy session in almost a week and though she thought her legs were a little weaker, her core strength was as good as ever.
Everything about the past week really highlights how much the Cancer Fight Plan is an art, not a science. Each person responds differently and Mom's course of treatment from the get-go was very aggressive (the appropriate response, since the cancer is very aggressive). But since her three systemic treatments, she's seeing the cancer move in the right direction. Maybe a couple of weeks off from chemo will give her an opportunity to make significant strength gains and resume the fight from a more stable and healthy place. I hope so. Only five more days until I get to go home
Monday, February 21, 2011
There is something in me that's a little frightened when she's away from the hospital. It's so weird, as I'm generally someone who fears hospitals and avoids western medicine if at all possible. Common logic would assume that I'd prefer to have Mom at home with an acupuncturist and herbalist on call. And while that sounds lovely, the truth is that I'm terrified of her health stability and take comfort, though cynical comfort, in the hospital.
Sunday, February 20, 2011
The visitor energy is a double edged sword. While Mom is always happy to see visitors and she perks up and feels well when they're here, once people leave, it becomes very clear that entertaining guests takes a lot out of her. One of the problems is that Mom doesn't have a mean bone in her body (it's unclear how I got so many mean bones) and she has a very hard time turning people away or asking for breaks when she needs them. Under normal circumstances, this is what it is. Mom recuperates during the week day from having the steady stream of visitors on the weekends and evenings. She basically sleeps when she's not eating or getting physical therapy or occupational therapy.
The problem is that now we have the wedding to deal with. Right now, it's still manageable-wedding planning takes place in small groups of very close friends and family who are aware of Mom's limits even when she's not showing her fatigue. My concern is that when the day gets closer, she's going to want to put more energy into it. That she's going to take what force her body needs to fight the cancer and infections and grow stronger, and waste it on frivolous nonsense. My other huge concern is that the wedding guests are going to want to spend time with her. Of course they are-90% of the people who are attending are coming to this wedding because they feel it's the right thing to do for Mom. Which is so well intentioned. It's so hard to criticize things that are done in the name of love (but here I go). Mom will not be able to enjoy the wedding if she's been entertaining guests that day, or the day before. It's going to be impossible for me, but even I can't spend that much of the day with her-I'll be taking pictures with Gary and probably doing something ridiculous to my hair. I'm hoping that we can spend some quality time together, just the two of us, in the morning, then let her rest and sleep so she can sit upright for the hour and a half the wedding and reception will be. Sitting up is exhausting. I just want to make sure people understand that they will not be spending quality time with Mom at the wedding or during the wedding weekend. The whole point of getting married at KGH is so she can be present and enjoy it-that means not being swarmed by well wishers and definitely not being exposed to a plethora of germs. More than two people at a time is disorienting, especially in a noisy room. Her birthday party was a perfect example of how things should go: everyone got about 5 minutes of one on one time, which she enjoyed and it allowed them to show her a little personalized love.
Saturday, February 19, 2011
Mom's still at Overlake and will likely be there until Monday at least. In addition to the bacterial infection, she's also got yeast growing. None of the nurses are sure if it's okay for her to have probiotics, which I stocked up on before I left the last time and are waiting in the fridge at their house.
The origin of the infection still isn't clear, so she's still on a high powered non specific antibiotic. We do know that it's a gram negative rod bacteria that's causing the infection, which makes me feel slightly better that it's not staph. Having taken microbiology as an undergraduate, I'm terrified of hospital-grade staph infections. Though, really, any hospital-grade infection scares the crap out of me. I don't like this situation, even though it means that Dad's eating well, that everyone has less distance to travel, that the nursing care is a little more reactive and assertive. I don't like that her stay keeps getting extended and that the yeast infection is going on. I think I also don't like that all of this is going on and I'm not there. Tomorrow is two weeks since I've been home, which has been my max time away since the diagnosis. I'm trying to make it another week-I have lots of appointments that I really should keep if possible, but it's hard. I'm sure you're all tired of my "I'm so torn" refrain, but, yeah, I'm so torn.
The other thing that I really don't like is that her new surgically implanted IV line isn't working properly. It's supposed to allow blood to be drawn and IVs to go in. It's only working for things going in (like antibiotics, which is essential); blood can't be drawn out. But of course they need blood draws to assess the infection status. So Mom's getting a lot of needle sticks. I'm actually sort of furious about it: she had to have surgery to have it put in and it's malfunctioning. I really don't want her to have to go through any pain or discomfort that isn't absolutely necessary, and this seems like some sort of stupid f* up on someone's part and it's frustrating. They aren't going to fix it-another surgery is risky at this point in time and the hope is to reinsert the chest port if/when the infections clear up. So, needle sticks are in the cards for at least another few days.
On the bright side, Mom seems better. She's eating really well (the yeast isn't interfering too much with her swallow right now), she's napping a lot through out the day, she's getting excited about the wedding and what she's going to wear...her attitude is good. I think she knows that the infections are a serious set back and it's one more thing that she's putting her energy into beating. And as Gary loves to say, once Mom puts her mind to something, it's happening.
Friday, February 18, 2011
My parents are still at Overlake and will stay at least through tomorrow. Which means that Dad is eating well these days, if not sleeping well. The rest of last night was a bit rough: Mom had her CT scan around 9pm and couldn't eat before because she had to drink a barium solution to create contrast for the CT scan. And she had surgery today to take out the port, so she couldn't eat for 12 hours before that. So there was an hour window where she could eat from 11pm to midnight. She managed a quarter of a turkey sandwich, but that was about it.
This morning she had the port removed and a line put into her arm. The doctors still don't know the cause of the infection, though the leading hypothesis is that it's a urinary tract infection. She's on targeted antibiotics and all of the doctors are expecting it to clear up without complications. The surgery went well and they're hoping to be able to put the port back in once all signs of infection are gone.
The other thing that needs to wait until the infection is cleared up is chemotherapy. So, not only will Mom have a break from systemic chemo, she'll have a break from the intrathecal. No one wants to risk a brain infection.
And now, the best news of all. I'm taking everything in stride and trying to react with cautious optimism, but our oncologist decided to check out the CT scan results today. Mom was supposed to have one more systemic chemo treatment next Tuesday, then wait a week for a CT scan to see if/how the chemo has been working and what all of the tumors are up to. But since she had one yesterday to check for infectious abscesses, Dr. C decided to see if anything tumor related showed up, also. It did. They're smaller. All of them. The metastatic tumors, the breast tumors, everything is responding to treatment.
Now, this is just what it is. It's not miraculous, it's not spontaneous healing, it doesn't change the prognosis. But it does mean that she's responding to treatment. It does mean that all of the discomfort, the nausea, the fatigue, is serving a purpose. It's incredibly motivating to Mom, she sounded better tongiht than she has in weeks. I know that, in her deepest heart, she's been questioning if this fight will work. And now she knows that she's beating things back and hopefully gaining more time. And though an infection is never a good thing, she knows that she's getting a break from chemo without fearing that a week lapse will send cancer into her organs. It's moving the right direction.
In addition to gaining even more of a positive attitude, she's also developed quite an appetite tonight. Ross is texting me now her dinner: soup, salad, chicken, beets, avocado, peppers, and blueberries. And she's requesting some cheese, too! I hope that she won't eat herself sick tonight! I hope that both of my parents are able to sleep a bit easier tonight, with less worry and therefore sleep more soundly. I hope that in the next weeks, she'll fight the infection and maintain or even increase this appetite and be able to make big gains in physical and occupational therapy. I hope this positive, forward moving momentum lasts.
Thursday, February 17, 2011
Mom was admitted to Overlake last night/this morning around midnight. They started an IV of antibiotics, but don't know where the infection originated or where it is now. Later tonight she'll have a CT scan to check things out. Tomorrow the port will come out of her chest-there's definitely some infection going on around there, so the doctors feel it's best to get the port out. They put a line in her arm that is supposed to do much of the same thing the chest port did, except be used for drawing blood.
I'm not sure how in depth I've gone about the chest port, but it was put in to eliminate the need for any IVs in her arm. She would get all IV medicines (including chemo) and fluids through it and any time she needed to have blood drawn, it came out of that. It was a really great thing while it lasted because she wasn't tethered to lines by the arm and she didn't have to have any needle sticks.
Mom also needs to have an EKG to make sure the infection isn't in her heart valves, which is a very rare possibility. But this cancer is pretty rare and her blindness as a result of it is really rare, so I take the "it's a very remote possibility" assurances with heaps of salt.
I'm not sure what this means for the chemo schedule; I am assuming that it will be disrupted and re-evaluated. I'm also not sure if the CT scan can also tell us anything about the state of the cancer and the effects of the chemo so far. We were going to have a CT scan after her next chemo treatment, so maybe this will double our investment? Or not, I really have no idea about these things. And when I was asking my dad a little bit tonight, he told me I sounded like an attorney and not in a good way. It's hard to be a control freak when the situation you want to control is 3000 miles away and 3 hours behind.
Despite the obvious setbacks and discomfort, I think both of my parents aren't terribly unhappy to be back in their old Overlake wing. They know all of the staff (who, of course, have all been stopping by to say hi and check in), they know the routines, they like the food-seriously, this little hospital stay may be the best my dad's eaten in weeks. I mentioned that while he was there, he might as well enjoy a bagel and lox and he replied that he'd already had it. They think they'll probably stay through Saturday, but everything is still up in the air. I'm sure we need all of the test results to be in before any decisions are made. In the meantime, Mom's room at KGH is being held for them.
In other, personal news, I've decided that being paralytic about Gary's and my wedding isn't doing anyone any good (okay, I had some help deciding this-I'm very blessed to be surrounded by brilliant people who can help me see beyond my own myopic little world) and we've decided to just set a date and hope for the best. It's not ideal and the venue may still change, but I realized that plan it or not, the time will pass and I'll have to do something eventually. So, it will be much smaller scale in all factors: guest list, celebration duration, festivities, food, etc. Well, it won't be smaller scale on the emotion level: I think the conscious love and appreciation for family and friends in that room will far exceed any of the original plans we ever could had made.
Wednesday, February 16, 2011
Last week (or maybe the week before) the New York Times magazine ran an article about Web MD and the Mayo Clinic website, basically saying Web MD is the most evil thing around and Maya Clinic is fabulous. So, I looked up chemo and infections on the Mayo Clinic website (not going to touch Web MD-I do NOT need to freak myself out any more than I am already) and it said it's common risk with chemo. It's dangerous because it can interfere with the chemo schedule.
Today I bought plane tickets home for February 27th and am hoping that I can still use those, but am standing by in case I need to go sooner.
Mom isn't in any pain right now, just exhausted. Her temperature is 99 now, without any Tylenol or other fever reducer in the last 12 (or more) hours. Two friends are also with my parents now-when I told Gary which ones, he sort of laughed and said, "well, that couldn't be any more perfect." So, I'm going to try to sleep tonight, knowing both of my parents are in the best possible hands.
Tuesday, February 15, 2011
I received so many precious gifts today. It was honestly an amazing day. Perhaps whiplash from Valentine's Day? Everyone was a little over-saccharined from all the commercial crap, so they turned their cheek to face true sweetness and I was the lucky recipient of the over abundance? Whatever the reason, I feel it all. You all are, of course, the bearers of these gifts and just please know you have my eternal gratitude.
The Manifesto of Encouragement (excerpts) From Danielle LaPorte of whitehottruth.com
- There are Tibetan Buddhist monks in a temple in the Himalayas endlessly reciting mantras for the cessation of your suffering and for the flourishing of your happiness.
- Someone is writing a book that you will read in the next two years that will change how you look at life.
- Nuns in the Alps are in endless vigil, praying for the Holy Spirit to alight the hearts of all of God's children.
- A farmer is looking at his organic crops and whispering, "nourish them."
- Someone is willing to lend you money, wants to know what your favourite food is, and treat you to a movie.
- Someone in your orbit has something immensely valuable to give you -- for free.
- Something is being invented this year that will change how your generation lives, communicates, heals and passes on.
- The next great song is being rehearsed.
- Thousands of people are in yoga classes right now intentionally sending light out from their heart chakras and wrapping it around the earth.
- Millions of children are assuming that everything is amazing and will always be that way.
- Someone is in profound pain, and a few months from now, they'll be thriving like never before. They just can't see it from where they're at.
- Someone just this second wished for world peace, in earnest.
- Someone is regaining their sanity. Someone is coming back from the dead. Someone is genuinely forgiving the seemingly unforgivable. Someone is curing the incurable.
How many times have I been that person in yoga class, sealing my practice with the mediation "may all beings be healthy, may all beings be happy, may all beings be whole"? Countless. And to just be reminded that there are countless people putting that energy into the universe right now...a beautiful gift.
Gift Two: gorgeous clumsy love
A dear one shared an experience a friend of his has been having with their mother, who is also gravely ill and has also lost many of the things we take for granted. She has also been cared for by her adoring husband, and wanted to give him a card for Valentines Day; she could only manage to draw wobbly hearts where she wanted to write poetry. And yet, as frustrating as that is, to know what you've lost and not be able to reclaim it...we are still so capable of loving and receiving love. Imperfect. Clumsy. Gorgeous.
Gifts Three, Four And Five:
A friend made arrangements for her housekeeper to come clean our apartment. Another cancelled plans for Costa Rica to be at our wedding in the Seattle rainy reason. Another made arrangements for me to have easy access to flights back and forth, and back and forth.
My phone just keeps buzzing; every time I get an email, a text or a phone call, it's someone else giving me something huge and amazing. It's a major karmic imbalance-I have not put out nearly a fraction of this goodwill into the world, yet I am receiving so much. And then I realize-it's not a reflection of anything I've given. It's all about what Mom has done. I'm reaping what she's sown, and my interpretation of that is that it's not a karmic imbalance after all. It's merely an investment that I now owe back, to my mom, my family and the world.
We lend strength when we are able, and we take strength when we need it. What a realization that there's exactly enough to go around.
Monday, February 14, 2011
Chemo pre-treatment is quite a cocktail. Each time Mom goes in for her Taxol treatment, she gets a magic elixir of who knows what. Benadryl, anti-nausea, pain medicine, steroids, and something that makes her beyond loopy. The last time she had Taxol was two weeks ago, and both Gary and I were in town to be able to enjoy the show. Today, I got it over the air waves, but it was no less spectacular. She animatedly talks in paragraphs about topics that I can't follow, then ends with a random question: "so, do you have to wake up for that at 5 tomorrow morning?" "Nope, I can sleep until about 7 tomorrow." "Oh, that's great, honey!"
Tonight, as I write this, she is hosting her book group. The group decided to read a collection of short stories, and Mom has them on her iphone, so she's been able to "read" too. I know she was looking forward to having them all with her and having some part of her normal life keep going as normal. Listening to NPR, reading and discussing with book club, talking about everyday life stuff, these are all crucial to her sanity and I'm so glad that her friends don't even think twice about indulging it. One of my uncles has made it his mission to make Mom laugh every day and will stop at nothing to make it happen (not that it's difficult, he's pretty gifted, comedy-wise). I LOVE this-what could be more healing than taking time each day to laugh, to see the ridiculousness of life and simply, purely enjoy it.
Last night was a rough night. After a great day of feeling well, she couldn't eat dinner and vomited her pills and all the liquids in her stomach. I don't think she got much sleep, which is a rough way to start round two of chemo. I know my dad didn't get much sleep, which is par for the course.
This is the 60th entry of this blog. There have been occasional mulit-day posts, but we didn't start the blog until a few days after the diagnosis and hospital admittance; basically, my dad hasn't slept more than three hours in a row in over 60 days. Neither has my mom, but she at least has been getting in solid naps throughout the days. Again, this question of sustainability creeps into my head. How much longer can he do this before he gets sick? And how much longer will I be able to split my life between the two coasts?
We'll all cross those bridges as they come. For now, I'm hoping for a good night and a very restful day tomorrow, hopefully without too many negative side effects from the chemo.
Sunday, February 13, 2011
The best part of the day was just talking with her about normal stuff. I used to have the habit of calling her anytime I was walking for more than 10 minutes, just to fill her in on the day, and more recently, talk wedding shop. Since she's been sick, this obviously hasn't been happening. On the one hand, half of the time I'm physically with her, so I don't need to call. On the other hand, now when I'm walking to the subway, or just taking a walk on a break from work, I miss her bitterly. But today she asked me what I was working on. So I told her about a grant I had received to run a new fitness program at the Y and how I've been working on a lot of home study and how it's a really amazing exercise program (if you're interested, check out fitnessanywhere.com), I told her about acupuncture, I told her I still haven't found a wedding dress, I told her about the enormous roach in our apartment and how I wasn't sure who screeched louder: me or Gary. (Ok, for the record, I screamed louder. I tried to smash it with a shoe, but the first one I grabbed was Gary's dress shoe and he wouldn't let me kill it with that. So I used one of his sneakers, and he grabbed my hockey stick-not sure which one of us finished the roach off, but I wouldn't touch the corpse, so Gary threw it out. I like that we both used weaponry that belonged to the other person. Gearing up for married life, I guess.)
Saturday, February 12, 2011
There are times when Mom gets confused and I don't understand it. Since getting sick, she hasn't been able to recall the year. When asked, she'll always begin "19..." then pause, and sort of laugh at herself before realizing we're in the 2000's. But then she won't be able to find 2011. She knows the days of the week and the month, but not the year. Very odd. And tonight she couldn't remember plans that we had gone over a couple of times. I don't know if it was because we were talking about things right after she woke up or if there is something going on in the timing region of her brain that is interfering with those kinds of things. But it's something and it worries me.
Though everything worries me. I worry when she doesn't eat enough, I worry when she doesn't rest enough and then I worry if she sleeps too much. I guess I'm just programmed to someday be a Jewish mother (even if I don't have kids, the obsessive worrying is still in my DNA). Mom told me that she ate well today: a friend brought over scrumptious things in the afternoon, so despite a modest breakfast, she got some good calories in her. When I asked how her stomach was feeling, though, she admitted that she wanted a break and didn't have an appetite for dinner. I think she's constantly less comfortable than she lets on and maybe that also alters her focus. I know if I'm in pain, specifics can become hazy. And it's got to be old by now-every day seeming the same, the only way to mark time passing is really by who's with her when, what food is being served and various therapies.
When we moved to the KGH, I admitted that I missed the hospital. Gary suspected that I missed the energy of the hospital more than the actual hospital, which is interesting. On a basic level, the hospital was high energy, emergency response, adrenaline-fueled. KGH is much more relaxed, slower paced, sustainable energy. If we can compare them to cities, the hospital was like New York and KGH is like Seattle. No wonder I felt more comfortable in the hospital. And we also were in phase one, with a phase two plan. Now, living in phase two, a phase three plan doesn't exist yet-who knows where Mom will be in a month, physically, emotionally or health-wise. There's no specific set goal that she's working towards. Everything is abstract: get better. But without specific, measurable outcome goals to achieve, it's impossible to tell when you're making progress.
So we're in limbo.
Strength and balance have much improved. So have appetite and stomach discomfort. But with round two of chemo beginning the day after tomorrow, who knows how long that will last. And if/when there are setbacks, how discouraged does it make sense to get? And, of course, the real concern is how the chemo is working. In about three weeks, we'll be able to take a look at where the cancer is now, how it's responding to treatment and if the chemo is worth it.
Friday, February 11, 2011
Mom continues to kick ass in PT and OT. And today, in eating! YAY! I got several reports today of how much she ate, which has been so good to hear. For the record, the challah today was much enjoyed.
Today the main complaint was fatigue. Which makes sense, right? Looking at the busy day she had yesterday, plus today being up and eating so much, it means that the naps were less frequent. So the goal for tomorrow is more sleep. She doesn't have OT on the weekends, so that's one less sleep interruption. (Not to say that OT isn't essential, it's just that tomorrow she should be able to get rest, which is important, too). So, if you're planning on visiting tomorrow, please remember that you won't be able to chat if she's sleeping.
I'm hoping for a restful, comfortable weekend. Monday starts round two of chemo, which I'm already dreading, but hoping that with the new pain medicines and IV anti-nausea, this round doesn't take quite so much out of her. On a personal note, I'm looking forward to tomorrow, too. After work tomorrow, I will have two days off in a row before I go back for 7 days on, one day off, then another 5 days on and then probably back to Seattle. Very much looking forward to acupuncture, a long run, brunch with lovlies and maybe even a little bit of that elusive magical thing I hear stories of: sleep.
Thursday, February 10, 2011
By all accounts, a great day. Mom was able to get outside and enjoy some rare Seattle sunshine. Dad bundled her up, got her in the wheelchair and off they went on a walk. I didn't hear Dad's side of the story, but Mom said she had a wonderful time. The KG Home also had a visit from the local high school's jazz quartet. As Ross arrived for his visit, he first heard the music and knew Mom must be upstairs listening. He peeked into the room and saw her sitting in the wheelchair, bopping her head along.
Mom learned how to dance her head like Stevie Wonder in a yoga class and now employs the technique regularly. So please picture her, sitting in the wheelchair, doing the Stevie Wonder. To a high school jazz quartet. These are the images that I hold on to. You simply can't cry with despair when you have that image of her, still enjoying life, still the prettiest person in the room, savoring the beauty that's still available to her. And there is still so much that she can access.
She is looking forward to Shabbat tomorrow-easily her favorite thing to eat these days is challah and Friday nights are matzah ball soup and challah night. And I have no doubt that she'll eat a good amount of it. The nurse practitioner ordered an intravenous anti-nausea medication to come 30 minutes before meals-today was the first day it was delivered, and the staff kept sending it at the same time as the meals. So she would wait half an hour for the meal and just have things reheated. We're hoping they can get the timing better tomorrow, but even if they don't, just knowing that she's able to get and keep more food down per meal is great. She threw up her pills this morning, but that was it-breakfast stayed down.
Physical therapy was great today, too; she rode the bike for 10 minutes and did all of her exercises. She sounded tired when I spoke with her this evening, but considering how much action she had in her day, no wonder. I hope she gets a lot of rest tomorrow, but it is clear that she benefited from the break in the chemo this week.
So, I guess the question is how round two of chemo will go, which starts this coming Monday. I hope that she'll be able to continue to gain strength, that the anti-nausea medications will be available and work for her, and that she'll be able to get all of the rest she needs.
Wednesday, February 9, 2011
Wow. I was so out of it last night, I wrote the date as January 8th instead of February 8th. And didn't notice it until tonight when I looked again at the blog stats.
Someone asked me how it felt to be back, assuming that now that I'm home, I have time to relax and am enjoying free time. Not exactly. Today is a good example of an average day: I taught a spinning class at 6:30am, went to work from 9:30am to 7:30pm, where I taught a sculpting class at 6:30pm, got home by 8:15, caught up with my parents for a half an hour, then caught up with Gary before he went to bed at 10. I'll probably get to sleep at midnight. Today was a good day: I didn't cry at all. Yesterday an adorable mother/daughter duo got on the train as I was going to work and I bawled the entire commute. They reminded me so much of May 2009 when Mom came to visit me for a week. I had just started dating Gary, had just moved into my very first solo apartment and was the happiest I've ever been. We went to IKEA, where she patiently waited out 3 of my meltdowns. We went to camp for Women's Wellness Weekend, where she outdanced me on Saturday night. She helped me decorate my apartment, I made her kale and eggs for breakfast; it was such a delicious time for us, blurring the mother/daughter line, crossing into true friends.
So now I'm trying to find the aspects of her strength and positive outlook in my DNA. I'm going to have to learn how to go to IKEA alone and put the meltdowns aside. I'm going to have to buy a wedding dress that she can't see, and she can't help me with, and trust that somewhere I must have absorbed her patience and perseverance. I won't pretend that I have anything close to her taste, but with enough patience, maybe it won't matter.
The good news of the day is that Mom is eating better. When I left, she was literally eating one bite of each item on her tray, and that was it. Maybe 6 bites of food a day. The past three days, she's been doing more than 6 bites at each meal. And this morning, those 6 bites were eggs and cheese, which I'm ecstatic about-I know she was loving the cream of wheat, but eggs and cheese are so much more calorie dense! Another positive is that she's now going to get an anti-nausea drug intravenously, which is great. Anything to reduce what she has to swallow is awesome. And they're going to increase her pain medication in the hopes that will help with her stomach discomfort as well. So, maybe she'll really be able to get a lot of food in her in the next couple of days. A couple of days ago, she said she would love to be able to eat an entire challah-it's not her appetite that's preventing her, it's the stomach pain. So, here's to pain meds working, stomach/espohagus healing and eating an entire challah. Amen.
Tuesday, February 8, 2011
Honestly, more of the same. Mom continues to be ruled by the physical that she can't control and by the emotional that she can. When it's an issue of mind over matter, her mind wins. She continues to make progress by leaps and bounds in physical therapy and occupational therapy. Today she walked farther than she ever has, and it was after doing all of the standing exercises. So she continues to push her strength and let her determination push the boundaries.
And when it's a physical issue that she can't positive-think her way out of, she falters. She vomits the entire contents of her stomach, which at this point is mostly bile and acid. She can't eat because it's too uncomfortable and now the food is tasting off: jello today was too salty. She couldn't do PT at 10am this morning because the nausea was too much to bear in a vertical position.
So she did PT at 5pm. After the nausea subsided, after visiting with friends and family, after drawing strength from wherever it is she's drawing strength from. So, are there setbacks? Constantly. But is she improving? Certainly on some level she is. Her endurance and stamina have grown exponentially. But at some point, she'll tap out. Food, in its most elemental aspect, is energy. And about 60% of our calorie needs go to simply running metabolic functions. The brain needs glucose to work properly. And as a nutritionist, and a daughter, I worry about that. Because I know how proud she is of all of the therapy accomplishments she's made. I can't bear to see that be taken from her, too.
Monday, February 7, 2011
Q: When will we be able to assess if the systemic treatment is working?
Q: Why is Mom having trouble swallowing?
A: Good question! (Or, as the oncologist says, "that's a head scratcher.") Mom had a barium swallow test today to see if there was anything obstructing her esophagus. The good news is that there is not an obstruction. The bad news is that they don't know why it's so sore and raw. The going hypothesis is that it's also a result of radiation, but the doctor wasn't willing to bet money on that answer.
Tonight on the phone she chastised me for sounding too stressed out. So, I'm following Mother's orders and going to sleep.
Sunday, February 6, 2011
More of the same. The pain in Mom's throat isn't in her throat anymore, it's traveled down her esophagus and seems to bother her at the top of her stomach. Her lack of appetite today wasn't due to nausea, it was due to extreme discomfort when swallowing. She describes it as being a result of taking all her pills, but I suspect that chemo may be playing a role, also.
It is so hard to watch.
A dear friend sent us an email this weekend, saying something about enduring the side effects of chemo by remembering that this is very strong medicine. So I'm choosing to focus on the hope that as harsh as the chemo is being to Mom's body, it's being harsher to the cancer. That this weakness, this discomfort, the constant sleeping and inability to eat are temporary and that the chemo will stop soon.
Tomorrow Dad will ask the oncologist if there's anything we can do about the throat/stomach pain. It seems that more and more medications are presented, which I understand, but it's hard for Mom to take the pills she has now; I hate to have to add. Though if they help in any significant way, we do it. More good news about the pain not being truly in her throat is that it's probably not an infection or a cold.
On a totally personal, unrelated note, I have gotten a lot of feedback about being the "kale queen." I've even had some people tell me they've tried kale for the first time since reading the blog. I know that today is arguably the national holiday of junk food, but maybe waking up tomorrow and throwing away the empty chip bags and recycling beer bottles will inspire you to try something green. A favorite way to eat kale, a la Claudia:
wash and dry the kale, separating the leaves from the stems. Sprinkle a bit of olive oil, salt and pepper on the leaves, put on a cookie or baking sheet and bake at 350 until the leaves get a bit brown on the edges, about ten minutes. Voila: kale chips!
Hi all. It seems there has been some confusion with Mom and the Medical Marijuana (which is actually a funny name for a book...hmmm)
Anyway, the only marijuana that Mom is taking is a oral medication called Marinol. It's a prescription and it's taken by mouth, with water. No smoking, no magic brownies, just pills.