Thursday, March 31, 2011



It's hard to believe that March 2011 is over. My life has been in a bizarre suspended time limbo since December and it's difficult to register time passing in a normal way. Since Mom's diagnosis, I have been back and forth between New York and Seattle constantly. When I'm in Seattle, I sit by her bed for hours a day, day after day. Time seems frozen, the days are indistinguishable from each other. If I'm spending the night at my parent's house, I drive to the Kline through the rain, listening to NPR and the latest Middle Eastern revolution. The best way to differentiate the time is by which country is in revolt. Tunisia when Mom was moving from the hospital to the Kline, Egypt was my last solo trip:10 days there before 1o days home before the wedding. Libya after that, the wedding trip, so bloody, tragic, still on going. If I'm spending the night with Mom, the days don't end. In New York, I don't listen to the news. I travel by subway, listening to mixes that Gary makes on my iPod and playing Freecell on my phone. I work 6 days most weeks, catching up the first week and then preparing for another departure the second week. The one time I was home for three weeks, that third week made me crazy. It was impossible to be away, yet so nice to feel like I was in the normal swing of things. I saw friends. I felt guilty.

Now I don't have a return ticket, I don't know when my next trip will be. If Mom has more days like today: ravenous, strong, I don't really need to be there. But I am conscious of the time I'm missing. Conscious of the struggle between living the life that I chose, far away, and feeling the sting of regret that I chose that life.

Mom had nearly a perfect day. Physical therapy and occupational therapy in the same day; that's always the plan, but it's very seldom executed. She walked to the gym, rode the bike for ten minutes, then walked back to her room, all after doing various strength and stability exercises. She had OT in the afternoon, after a big lunch, after a big breakfast. She visited with lots of friends and took lots of naps. But by tonight, her stomach was hurting and her appetite had disappeared. Chemo kicking in. Not nausea yet (and maybe that won't come) but discomfort.

This is the start of her third round of chemo. She had one and a half rounds before she got an infection that sent her back to the hospital, they day I sent out my wedding invitations. I'm assuming I'll get another signal that it's time to go back when it is. Or I just won't be able to stand it anymore and I'll go for a long weekend. I'm definitely planning to be there for Mother's Day and planning to make a huge freaking deal about it. I am trying to create milestones for her to reach that are attainable and worth looking forward to. I was very worried that she would sort of crash after the wedding was all over and she didn't, which is very encouraging. So, now on to the next thing. On to April.

Wednesday, March 30, 2011


Mom calls lumbar punctures "the lumbar punch." She went for chemo today, after about five weeks off. Our regular oncologist, Dr. C is on vacation and the fill in wanted to do a lumbar punch which Mom was not having. She felt that if it hadn't been discussed or communicated in advance, she wasn't going for it. Plus, this is the doctor who had trouble accessing the reservoir originally and Mom didn't really want her digging around her head with a needle. So Mom only had the systemic (Taxol) treatment today. Dr. C is back next week and can administer the intrathecal and a lumbar punch, if necessary.

At 7pm EST, Ross texted me: "mom is eating so much!" I was excited, but after talking to her, even more so. Let me tell you everything she ate this afternoon: some of a veggie burger and almost an entire order of General Tso's chicken. Now, as a nutritionist, I can tell you that any restaurant portion of food is way more than a serving. For everyone else, an entire order of takeout Chinese food is too much. For Mom, it's perfect. I'm thrilled.

She did have a little bit of her loopy, medicated voice, but not too bad. In fact, her recall was better than Dad's. Gary and I celebrated our marriage with massages in Seattle and Broadway in NYC. Tonight Mom asked how we liked the play. As I raved about it, I heard my dad ask "what play?" (every time we talk, I'm on speakerphone) to which Mom replied, "Gary and Aynsley saw Jersey Boys today!" And there you have it-Mom, on chemotherapy and god knows what else, remembering the mundane details of me and my husband's life without prompting. As they were doing their taxes. She never ceases to amaze me.

Tuesday, March 29, 2011


Mom has bad luck with ultrasound technicians. The last ultrasound that she had while I was with her was at Overlake: a really nice, but inept young woman. She was clearly just out of school and it took her three hours to do a 45 minute procedure, leaving Mom cold and uncomfortable for way too long. This morning she had another ultrasound on her right arm, which has been swollen for a couple of days since the increase in IV fluids. The good news: there's nothing wrong with her arms and the swelling has already gone down since the decrease in fluids began last night. The bad news: the ultrasound tech was rude, rough and devoid of any personality. One of Mom's friends was with her during the procedure, watching and trying to make conversation: "what are those lines on the screen?" He answered that he didn't have time to explain it to her, that he had more ultrasounds to do that day and to basically leave him alone. Then he was rough and when Mom mentioned that what he was doing hurt, he didn't stop or apologize. Mom had it 100% right when she told me the story: "this guy had no business being anywhere near a hospital or convalescent home." Absolutely. This work is hard. It's not easy being around sick people and your schedule will not go as planned. If you can't deal with it, don't do it. I couldn't do this work. So I don't.

Aside from the jerk technician, today was another good one for Mom. She had occupational therapy in the afternoon and enjoyed it. She spent nice time with her friends and is still on a bit of a wedding high. She was fishing for more information today: "Did anyone else say anything about the wedding? What did people say about the picture?" It was cute and I'm so happy that she has good memories to focus on.

Tomorrow is back to chemo day. She leaves for the oncologist's office (in Bellevue) at 7:45am and will likely be there for a few hours. If the past is any indication of how she'll feel, tomorrow morning will be great-the pre-meds are strong narcotics and make her very happy. Once she gets back to the Kline and the drugs wear off, she'll have a headache from the intrathecal chemo and be tired from the systemic. But she still should be okay. Thursday may be okay, too, but by Friday, she'll probably feel like crap: super exhausted, nauseous, probably a bit of vomiting...though this time around we have a specific animo acid supplement that is supposed to minimize the side effects, so maybe she won't feel as tired. Fingers crossed.

Monday, March 28, 2011


Since last Thursday, Mom has continued to feel better and better. She responded so well to the increase in IV fluids and since the port area was redressed, she's much more comfortable. She attributed the vomiting to pain and since Thursday, hasn't had any more of that and only limited nausea. Limited appetite, but at least she's able to keep what she does eat down.

Friday I didn't get to see my parents at all, I had so many last minute errands to run before the wedding. Well, I ran into my dad as I was leaving the house and he was arriving; we had a pow wow from our car windows, but that was it. I spoke with Mom a few times and each time she sounded better and better: more fluids, less pain, more rest. Cousins of my dads were in town and spent a lot of time with them on Friday, which was wonderful for both of my parents. They were so happy to get such nice quality time and I didn't feel so guilty for not being there.

Saturday I arrived at the Kline around 2pm and Mom had just come out of the shower. She was relaxed and ready for a nap, so I went upstairs to do hair and make up while she got situated in bed. I don't think she had been eating a whole lot for the past few days, but she was trying and eating little bits. Dad came upstairs for pizza and wedding rehearsal while Mom's BFF got her ready for the wedding in the evening. She had also arranged for Mom to have a special wheelchair and a special nurse friend with her throughout the night-it was perfect. The wheelchair had a very high back and could recline, so if Mom got tired of sitting up but wasn't ready to leave the reception, she could lean back a bit and still be with everyone. Before the ceremony, Gary's parents came down to Mom's room and, along with our special witnesses, we signed our Ketubah, the Jewish marriage contract. All four of our parents held the Ketubah, said a little blessing, and passed it to us. It was a beautiful little ceremony. In December, I wasn't sure that Gary and I would be able to have all four of our parents physically with us as we married and that moment reminded me of that fear and of my mom's fierce determination to be there. She so desperately wanted to be there for me and for her. And she was and it filled my heart.

Mom was amazing at the wedding. She came upstairs exactly at 8:30pm as the wedding was about to begin. My adorable 3 year old cousin was the perfect flower girl: she marched down the aisle with her head held high until she got about 1/3 of the way down, then panicked and ran back to the start. Her daddy was there and pointed to her mommy at the end of the aisle and after a few moments, convinced her to go back down so she could reach her mom. I've never seen a child run so fast in party shoes, but she sprinted down that aisle. I was giving Mom the play by play as everyone laughed. When it was time for us to walk down, Dad pushed the wheelchair and I walked on his arm. Mom started crying and seemed a little confused, but when I came around to hold her hand, we realized she wasn't confused at all. She was the Mother of the Bride and it was emotional. (Honestly, I may have been the only person in the entire room who didn't cry that day. Dad was crying, Gary was crying, I heard sniffles in the seats...) We came to the chuppah and had what may have been the shortest authentic Jewish ceremony ever. We were all extremely mindful of the time, knowing that Mom was determined to give a toast, hear other toasts, taste cake that we cut and dance with my dad.

She did all of those things. Her toast was heartfelt, loving and honest, she sampled the cake and the dance was gorgeous. Dad lifted her out of her wheelchair and held her close as all of the guest applauded. Gary and I started dancing and soon most of the other guests were, too. We all danced the entire song. Okay, I'm almost done with wedding stuff. Just a note, so y'all are informed: though I am extremely honored to be Gary's wife and part of his family, I am not changing my name. It's been cute to see some things addressed to Mr. and Mrs. but I'm still boring old Ms. Kirshenbaum. Also, I thought some people might enjoy a photo, and our amazing photographer sent this one for exactly that purpose. Gary and I spend most of our time laughing and this day was no exception

On Sunday, I was afraid that Mom would experience a significant let down after all of the anticipation and maybe even get sicker. But when Gary and I arrived Sunday afternoon, she was radiant. She and Dad had eaten wedding cake for breakfast, they had entertained some cousins and they were happily remembering the wedding. Mom knew exactly who she had spoken with and was sorry she didn't have time to talk with some of my friends and some of Gary's family (the reception was an hour and a half, tops). Gary and I stayed with her for about two hours, then went to enjoy a little 12 hour hotel honeymoon: massages, naps and room service.

Today was more of the same, except Mom seemed even a little better. She ate half a container of Starbucks oatmeal with dried fruit, nuts and a tablespoon of butter for breakfast. The nurse practitioner who we adore was back (not the awful horrible one from last week who agreed to supervise then was nowhere to be found, among other transgressions) and she talked about gradually reducing the IV fluids now that Mom is feeling better and adequately hydrated. She also talked with Mom about her return to chemo and if she has any concerns. The main worry is that our regular oncologist is out of town this week; Mom's being treated by one of the guest oncologists we had in December who couldn't access the O'Maya Reservoir and hurt her during chemo administration. Dad is determined to help advocate this time around so that doesn't happen.

Thursday, March 24, 2011


What a lesson. I was so worked up about Mom's surgery on Tuesday that once it was completed successfully, I thought we were out of the woods. It seems crazy to me that I still haven't learned: don't take anything for granted. Today was horrible.

The day started with Mom vomiting before breakfast. More than she has in a long time. Bile, because her stomach is empty; she hasn't had an appetite since the lunch on Tuesday. By the time I arrived around 11am, she was feeling better, but not by much. She was still nauseous and in a lot of pain from the port site. She described it as sore and achy, and also raw. Around 1pm, two nurse practitioners came in to talk to her and ordered IV fluids, an oxycodon for the pain and a new dressing for the surgery site; they felt that it might have been dressed improperly yesterday and that might be causing the pain. Mom requested that one of them supervise the new dressing, which they agreed to.

An hour later, we still had no IV, no pain meds and no nurses to dress her. Ross finally tracked someone down for pain medication and an hour after that we had someone come in and redress, but the NP didn't arrive to supervise, even after Mom requested her again. It ended up being okay, the nurse did a much better job this time around, but it was frustrating to not have Mom's requested honored. She also finally got an IV of fluids.

The scariest part of the day was around 4pm, when Mom seemed finally to be feeling relief from the port site and the oxycodon. We were talking when all of a sudden the left side of her face started to go numb and her voice changed dramatically-she yelled for her friend and said, "I think I'm having a stroke!!" We were able to get several nurses and the doctor in the room very quickly, but no one really knew what was going on. She said it felt like the left side of her face was going numb and her tongue wasn't working. Her voice sounded almost like the Kermit voice again, but thicker. We all jumped into action, asking her to smile, talk, raise her arms and legs, etc and it became clear fairly quickly that whatever was going on wasn't spreading and may even be subsiding, but it really frightened her (and everyone else in the room). She was able to raise both arms equally, and had full sensation in her extremities. But then her hands started to tingle, which scared her again. And when her back was raised a bit higher in bed, the sensation started coming back. But as soon as she went lower, it went away again.

The medical consensus was that it wasn't a stroke-they didn't think she would had have such a full and immediate recovery if that was what happened. They also called the oncologist, who recommended an MRI if it happened again, but didn't think that this one episode warranted that. The theory now is that she was simply dehydrated and that the oxycodon may have dropped her blood pressure even more. And that the tingling sensation was a result of her panicking and hyperventilating. She received a bolus of IV fluids and will continue to get a steady stream of them all night. (The IV fluid history is that she usually got a bag each night, but hasn't been able to since the surgery due to not being able to access the port. Couple that with not feeling up to eating or drinking anything in the past couple of days, and it's a significant drop in fluids. )

Today Mom ate one saltine, lots of ice, about 8 ounces of ginger tea, a bite of a french fry and two pieces of honeydew melon.

When I spoke with her tonight, she said the port was feeling much better-the new dressing really helped, which was a relief. I really really really hope that the pain continues to subside and that the bizarre episode is over and done with and was due to dehydration. The worst part of everything is the unknowns, the raw fear that consumes us all every time sometime unexpected happens. The fear that grips Mom and the helplessness that follows. Watching all of the nurses and doctors in the room while Mom was going through everything was incredibly humbling. There is so much they don't know and can't do.

And on that note, I have more bad news. I will not be updating this blog for the next couple of days. I hope to pick back up on Sunday, but in reality may not until Monday. I'm sorry for the pause, especially with news like today's, but I need to be present for my family as that family is so significantly growing this weekend.

Wednesday, March 23, 2011


Ups and downs, victories and defeats.

The port surgery was successful yesterday, but today Mom's entire right side is extremely sore. This afternoon around 2pm, the nurses needed to remove the dressing and flush the port in preparation for administering IV fluids tonight. Mom usually gets about 500ml of water and electrolytes each night; she simply can't drink enough to keep her properly hydrated. Last night they didn't give her the IV because her port was still healing and the nurse on Capitol Hill removed her pick line too early. Something about the way the dressing was removed or the port was handled was horribly painful and Mom was pretty miserable the rest of the night. She had a headache (I hypothesized it was due to dehydration), she was achy, she was a bit weak and nauseous...all in all, not great.

Mom ate the least amount today than I've seen in a long time. Two bites of dinner. Six bites of lunch. She was a bit nauseous in the morning, but it seemed to subside in the afternoon, though she did make the statement today that she's always a little nauseous. I hadn't known that and it made me so sad. And also so proud of her-she never feels like eating or doing therapy, but she always pushes herself to get stronger.

Mom also had the strongest PT session that she's had in a week. She walked a little bit, which she hasn't been able to do in a long time. That was encouraging and fun to watch. She also got a lot of massage today. Ross and I rubbed her head in hopes of alleviating the headache and her legs got a lot of attention in PT. I also did some acupressure points for her stomach which worked wonders and made me so happy that a little point stimulation made her so much more comfortable.

She took a lot of Tylenol today in hopes of making the headache and the soreness more tolerable. I'm hoping that with the IV fluids and maybe a full night's sleep that she'll feel much better tomorrow.

Tuesday, March 22, 2011


Whew. BIG exhale. I have to admit how nervous I was about today. Mom had another power port put in and I've been extremely worried about the procedure. It was sort of a gate, stopping me from focusing on my wedding, preventing me from seeing anything beyond today. I was scared.

I spent the night with Mom last night and we got a fair amount of sleep. We were up every two hours from 10 to 3, then slept through until 7am when the nurse tried to give Mom her anti-nausea medication. She's supposed to take it intravenously 30 minutes before eating. It's my understanding that people don't eat before surgery. So, I inquired about the medication and got a blank stare. It took us almost two hours to find out if Mom could eat or drink anything before the procedure. It turns out she wasn't supposed to, but at that point I had given her ice and water because her mouth and throat were dry. But the staff would have given her medication and breakfast; somewhere along the way, communication broke down. Mom and I both were beyond frustrated, but everything ended up working out fine.

The cabulance arrived at 9am to transport Mom to Capitol Hill where she was having the surgery. Dad and I rode with her and the paramedics, who were 24 years old (really-they were talking about looking forward to turning 25 and thus renting cars) and making ridiculous small talk. But they did a great job and we arrived with Mom still fairly comfortable. There was about an hour of prep work to be done: IV fluids, prophylactic antibiotics and an ultrasound to check out her veins and see where the port would be inserted. It was finally decided that they would use her right jugular for insertion this time (last time it was the left subclavian) and asked that Dad and I meet Mom back in her room in about an hour. We walked, had lunch, and got back just as Mom came back. She spent the entire procedure under conscious sedation, so a huge chunk of my worry was unfounded: she didn't even go under general anesthesia. She was alert and hungry when we got back and ate a good amount of cheese tortellini and asparagus (a good amount is about half of the serving) and a couple of bites of chicken. She then napped a little bit while the RN monitored her vitals and made sure she was okay.

We left Capitol Hill at 2pm and headed back to KGH. Mom snoozed pretty much on and off the rest of the afternoon. The rabbi chaplain for the facility came to see us in the afternoon when Ross was there, so we all spoke with her a little bit and had the Mi Sheberakh said for Mom.

The rabbi told us a little Jewish folklore story that I fell in love with. When praying for healing, you say the sick person's name and their mother's name (if it were me: "Aynsley, daughter of Flynne") because you're appealing to the nurturing, loving, feminine side of God; that's where healing comes from. Though I would never describe my maternal grandmother in those terms, I loved the sentiment. That we're calling on all of the Mothers and asking for their help. There it is again, my mantra of the last three months: you never stop needing your mom.

Monday, March 21, 2011


Tonight was such a special time. It wasn't planned, or at least I didn't plan it, but Dad picked me up from the airport right after work. We went to PCC to pick up dinner, then straight to the Kline. Ross and Mom were hanging out together and we ended up having about 5 hours of just the four of us time. So nice. We ate kale salads and spelt muffins, (okay, Dad didn't eat any kale or spelt, but he had some pasta) listened to Glee and watched Mom bob her head with the music. We got a surprise visit from the dietitian who told us that Mom had gained some weight-when I left, she was 93 pounds. Yesterday she weighed in at 99. And that was after a steady climb over the past two weeks-the dietitian felt sure this wasn't an anomaly.

This is such encouraging news. And I think it's really motivating for Mom. She's been trying so hard to eat and know seeing that it's paying off, that the weight loss has stopped and she's moving in the right good. She was feeling a bit apprehensive about the surgery tomorrow, but after that conversation, she was much more comfortable with it and ready to go.

The most exciting thing for me was watching Mom navigate the bathroom. My last day here on my last trip, the PT and nursing staff were working on Mom walking to the bathroom with a walker instead of using the bedside commode all the time. She's been walking to the bathroom multiple times every day since then and today blew me away. She was so strong and steady on the walker-I barely needed to hold her support gait belt. And she knew her way around. It was awesome to watch her navigate to the bathroom, then around the bathroom to the sink and then back to the bed. I pointed out that if she could navigate a space that she's never seen, she's well on her way to more autonomy. Awesome.

To give you all a sense of the bathroom procedure, someone will set up the walker in front of the bed. Mom will usually be able to get herself to a seated position with her legs on the floor and someone will pull the gait belt around her waist. Then she and her helper will get her to a standing position and holding onto the walker. She then walks to the bathroom (about 6 feet away from the bed) while the helper holds her belt and makes sure she’s steady, while calling the direction she needs to go: “a little more to the right.” The helper then helps her sit and stand back up and get situated on the walker again to walk to the sink. The helper will turn on the water to make sure the temperature is okay and put soap on her hands and she’ll wash her hands. While both hands are under the sink, the helper needs to hold her steady so she can stand up. Then she walks back to bed. It’s awesome to watch her navigate and stand so strong, but it’s definitely a two person job.

Someone was asking about Mom dancing at the wedding. To be clear, she can’t stand unassisted. “Dancing” will be Dad holding her up in a nice secure hug while she holds his neck and shoulders. It will be exhausting for her, but rewarding, too. Nothing like the dancing she used to do, but movement to music all the same.

Sunday, March 20, 2011


March is notoriously rough for me. Not so much the in like a lion stuff-I tend to respect ferocity. But the sense that winter is never going to end, that sunshine and warmth are a tease and will it please stop raining already? The past few days have been glorious in NYC, not at all the weather I need to escape. From what I hear, the Seattle spring is cooperating also.

So, here we are, at another turn in the season wheel. At Solstice, Mom was diagnosed. At Imbolc, she celebrated her birthday. And now we meet Equinox. The magical time where the day is equal to night, where we tip our toes, finally, into the light half of the year. I wanted to marry today, but logistically couldn't work it out. So we picked the very next feasible date that was closest to the first day of spring. The first day of renewal. When we come out of hibernation, shake the sleep from our eyes, smell the earth, see the new green things sprouted and fresh. It seems an auspicious time to begin a marriage. It seems a possible time for miraculous healing.

And really, isn't all healing miraculous? Watching a paper cut on your finger close and knit and disappear is amazing. Running freely on a hip or an ankle that used to not permit it, that doctors wanted to cut into, is a gift. Cancer leaving the body, tumors shriveling up into nothingness...its possible. It's not likely or probable, but if we can't believe in the possible, especially when the world is new again, when tomorrow the day will be longer than the night...we need to believe that these things can happen. Even if it won't happen in this case, even if its someone else's miracle. I'm putting my energy into healing.

All day long, I've had ee cummings in my head:

since feeling is first
who pays any attention
to the syntax of things
will never wholly kiss you;

wholly to be a fool
while Spring is in the world

my blood approves,
and kisses are a better fate
than wisdom
lady i swear by all flowers. Don't cry-
the best gesture of my brain is less than
your eyelids' flutter which says

we are for each other; then
laugh, leaning back in my arms
for life's not a paragraph

And death i think is no parenthesis

Saturday, March 19, 2011


Sleep has been a limited and precious commodity for Dad (see yesterday's post). This morning, either as a special Saturday gift or due to a change in nursing staff, my parents were left alone to sleep in. No IV at 7am, no vital check at 8am; they both woke up on their own at 9:45. Now that's a Saturday morning.

Dad hadn't been home since Wednesday, so this evening he finally went home, showered, changed his clothes and brought in all the packages of wedding paraphernalia that I'd ordered to the house. A shower, coupled with a full night of sleep, made him sound so refreshed.

Mom also sounded good. The nausea seems to be a little better. She wasn't able to do physical therapy today either, though; her heart rate has been too high. We'll ask the nurse practitioner about that on Monday. My main concern right now is what's causing that and if it will interfere with surgery on Tuesday. Heart stuff, understandably, makes me very nervous. The amount of muscle wasting that she's experienced in the past three months is significant and makes me very concerned about her heart. As I tell my clients all the time, your heart is a muscle-I help people train for hypertrophy, but atrophy is just as possible, and so frightening.

A few weeks ago, I was viewing Mom's progress as two steps forward, one step back. I don't know how to rate it anymore. I don't know if it's moving in circles, or oscillating, but I know it's not where Mom wants to be. I know she's exhausted and frustrated and we all feel that, too. I'm hoping for a good night, for sweet dreams, for a comfortable weekend and a better day tomorrow. And I'm looking forward to a gigantic hug on Monday.

Friday, March 18, 2011


My dad had the whole morning planned out. He didn't have to be at work until 10 am, so he was going to give mom her pills in the morning and then go back to sleep for a couple hours before he had to start getting ready to leave for work. Yes sir, he had it all planned out... Of course, that all changed once a nurse tripped and and spilled a bucket of my mom's urine on his bed. Yes, my mom had to use the bathroom at 6 am this morning, so my dad secured the commode at her bedside. Once my mom had finished, they called in the nurse to help clean up. As my dad, half awake, was tucking my mom back into bed, he heard a yelp from the nurse followed by a loud CRASH. Piss went everywhere, much of it landing right on my dad's bed. The nurse felt terrible. She hurried to pick up the bucket and quickly dump what was left of the contents into the toilet as pee continued to drip out. On her way to the bathroom, she crossed my dad's bed, and my dad watched as pee dripped across all three of his pillows. My dad seemed proud of himself for what he described as "keeping calm." I stayed pretty calm wouldn't you say, honey?" he asked mom as he retold the story to me tonight. My mom grinned, "Sure, honey." she replied. He told my sister the story and she asked if he requested new sheets. He told her he requested a whole new bed (which took the staff an hour and a half). Needless to say, he did not get those extra hours of sleep as planned.

Today was a better day for my mom. She was quite uncomfortable all day, nauseous and did not have much of an appetite from lunch on. For dinner she had only 6 oz of matzah ball soup. She didn't do physical or occupational therapy and was pretty tired all day. Just uncomfortable. She is going to really work towards eating more tomorrow. I know she will. When she puts her mind to something, she does it. She has had to remind my dad that she is now capable of getting out of bed and standing up under her own power. There is real determination in her to build strength and self reliance. The truest hurdle she must jump over is getting calories in her. food, food, food.

Thursday, March 17, 2011


Mom always celebrated the holidays, even if they had nothing to do with her. On Cinco de Mayo, she made tacos and mojitos. I remember her enjoying a green beer or two on past St Patrick's Days. But today I didn't even mention it. We spoke briefly, her voice bright as always, asking about my day, keeping track of my silly schedule. She brushed off her day, but I got the gist: nausea, vomiting, weakness, fatigue. She didn't feel well enough do do physical therapy or occupational therapy. She vomited her pills in the morning and was sick again in the late afternoon, while waiting for dinner. Her stomach was empty, so she just got the burning sensation. Obviously, no appetite after that.

Her anti-nausea medication was increased yesterday. Clearly, it's either not kicking in yet, or not the right dose, or not the right medication. And I'm still haunted by the why. Why is she nauseous now? How can we make her not nauseous?

The sickest I have ever been was on a cruise-I was so seasick that I couldn't walk. For two days, I crawled on the floor to get from the bed to the bathroom. Horrible. Though, true to the nature of memory and pain, I can't actually physically remember what it felt like in my body. I just know it was awful. And it seems like Mom is just on one big torturous ship right now-nothing is making the seasickness go away and no one knows what's causing it in the first place. I would give anything to make it stop. I'm just hoping for a much better day tomorrow.

Wednesday, March 16, 2011


I always want explanations. My whole life, I have constantly justified or reasoned things out in my mind, to the extent that I make a lot of shit up to make myself feel better. I'm sure a lot of people do this. Part of what makes Mom's disease so scary for me is that I don't understand it. I don't understand the trajectory it took, what the tumors look like, where they are, what the hell happened to Mom's vision...I don't understand why she lost all of her strength and stability-was it tumors around the part of her brain that control mobility and motility? Is it being in bed 24/7 and just losing the muscle strength or neuron memory? Does that usually happen with cancer? I don't understand how one day she was in yoga class, in crow pose, and one week later she can't move out of bed. The first week in the hospital, she went from being able to ambulate to the bathroom with moderate help from me to not being able to sit up in bed by herself. What happened?

And now, she's battling nausea constantly. It ebbs and flows, but the past couple of days, it has interrupted physical therapy and prevented occupational therapy. The medical team has played around with her medications to hopefully get it under control, but why is she nauseous? She's not on chemo. Does cancer make you nauseous? Has it spread to her stomach or her ears? Will this impact her ability to tolerate chemo when it starts up again? What about her ability to tolerate the surgery on Tuesday? Could it be a side effect of another medication that she's taking?

You all understand the insomnia now, right? No amount of kava kava will turn that obnoxious track off (and I'm toning it way down for your benefit). The doctors have been very honest and open about their limitations in understanding how all of this works. They just don't know. And I appreciate the honesty from them, it's just frustrating to me, because they're way smarter than I am and have a much deeper understanding of the way our bodies work and they've made peace with uncertainty. I would give anything to have an understanding of what Mom is going through, even though I know full well that understanding doesn't change anything, that I still can't make the nausea go away even if I could define what was causing it. Or maybe I don't know that. Maybe I'm still in that stage of Magical Thinking where I believe on some level that if I could just discover the mechanism for all of this, I could undo it. Or if I could just find the right acupressure point, I could stimulate it and at least make the nausea go away.

All these feelings of helplessness on a personal scale, and then I counter it with the all the feelings that come up watching footage of Japan. Maybe it's healthy, or maybe it's destructive, but it does bring the helplessness and the frustration and basic raw sadness to focus. And again, I realize how lucky we are.

Tuesday, March 15, 2011


Mom sounded great tonight. She had a really nice day with friends and a great PT session, where she walked and worked on standing balance. She was also proud to report that she's been up and walking throughout the day for almost a week now-every few hours or so, she's ambulating to the bathroom. This is great progress and so healthy for her. Every once in a while, her physical therapist will ask me if I have any therapy goals for my mom. And I always say: anything that gets her more autonomy. Anything that brings her one step closer to her normal life and to functioning on her own. And she is definitely moving in that direction. It's great to see her motivated.

She has an appointment next Tuesday to have her chest port reinserted. Surgery always makes me nervous, but I'm glad that I'll be in town for this one and she'll have a week to recover before she begins chemo again. It's an outpatient procedure, but it's still surgery. She still gets put under. So that's the next little hurdle she's facing; I'm putting my energy into her coming out of that one strong and fighting, just like all the others.

AS for me, I think my recent sleeplessness is just boring bridal insomnia. Chamomile tea didn't cut it last night, so I'm trying wine tonight. Fingers crossed.

Monday, March 14, 2011


Please forgive my brevity tonight. I am going to attempt to get more than 6 hours sleep, which hasn't happened in over 3 weeks. (I'm hoping the triple bag of chamomile tea will help).

Mom had a good day today. She sounded strong and cheerful on the phone and ate decent amounts, though nothing spectacular. She had nice visits with friends and family and seems in general to be in good spirits. We're thinking that chemo will start up again on March 29th ish, so she's still got another couple of weeks to enjoy not having an infection or other unpleasant treatments.

Sunday, March 13, 2011


I had a very interesting conversation today with a dear one. She has been following the blog, and also checking in with me on pretty regular intervals when I'm in New York, so she's getting a much fuller, unedited picture of my coping mechanisms and mourning process. She commented that she's noticed that I am authentically manifesting good things.

We all know that in situations where we are rubbed raw and can't pretend, where our emotions rule in almost unconscious ways, we discover truths about ourselves. This is one of those times for many people in my life: my immediate family, of course, but also our extended circle. I watched Gary instantaneously, and now continuously, put my needs ahead of his own. He has never once faltered in his support, never shrugged away from me coming home and flooding his shoulders with my tears and snot again and again, never lost his patience with my crazy mood swings. I see my uncles and aunts sitting next to Mom's bed day after day, simply being a presence in the room, another life force and an extension of support for both of my parents. I see now how the family friends are really just family, who have jumped in to any role necessary, without being asked. And I watch myself, riding the waves of emotion that come. Anger arrives. Of course it does. It has always come to me, as a result of one thing or another. I have long known about it, and been afraid of it. As a teenager, anger ruled me. But I started to hate the anger, and its hold on me. I found things like this poem by Brian Andreas: "I once had a garden filled with flowers that grew only on dark thoughts but they need constant attention & one day I decided I had better things to do. " and song lyrics from The Indigo Girls, who Mom and I saw every summer in Seattle before I moved away "darkness has a hunger that's insatiable" and realized that these things are true. If we give into anger, it's so difficult to climb out.

So I had practice, long before I really needed it, of not giving in to the anger. And now, when I feel that I really have no choice in the emotions I'm feeling, anger only visits occasionally. Something else to count in the gifts I have received.

Some of Mom's gifts from today:
  • acupuncture
  • a happy stomach
  • fried chicken for lunch
  • visitors bearing laughter
  • strong physical therapy
  • a completed outfit for the wedding
we're still counting them. They're endless

Saturday, March 12, 2011


Now that I am back in NY, I am in catch up mode. I arrived home at 1am on Friday morning and worked two long, full days. Tomorrow I have the catch up of homey details: laundry, bill paying, food shopping, filing my taxes (oh, man, taxes). And hopefully sleep. Though daylight savings time is not the best weekend to catch up on sleep...

I spoke with Mom very briefly today-she was sleeping, but woke up as I called and said hi before falling back to sleep. The usual fatigue, but I think deep sleep is really good for her. She ate modest amounts today, which seems to be the norm. Usually there's one meal that she really likes of the three and she'll eat half or more of that, and then about a quarter of the others. Not great, but consistent. Now that the feeding tube isn't an option, I think all of us want to get as much food down as possible, but Mom describes herself as having no appetite and being uncomfortably full most of the time. When I ask her why she can't eat one more bite, she says she's too full. Wasting away is a common cancer side effect, I know. It's just that I have spent my life surrounded by Jewish mothers and my default impulse is to feed in every situation.

Friday, March 11, 2011


One of my favorite general university requirement classes as an undergraduate was cultural anthropology. My professor was a striking woman: long, lean and blond, who never wore the same outfit and who had done her dissertation on war and refugees. She was a magnificent storyteller and when she would give personal examples, she would always coin them "from my own little life." As an 18 year old, this seemed so strange to me. She was clearly, in my mind, living a very large life: travel to war torn nations, captivating 150 freshman three times a day, publishing literature. Of course, I now understand her better.

I remind myself of that saying constantly. It pops into my head at random moments, sometimes when someone refers to Mom's illness as a tragedy. Or when I catch myself crying while reading the newspaper, or a Men's Health magazine. My own little life. According to the United States National Cancer Institute, 200,000 women are diagnosed with breast cancer each year. And breast cancer is not anywhere near the most common form of cancer. Every second of every day, someone else's little life is also changing dramatically. And a bum diagnosis is bad news. Definitely. It's scary, it changes life forever, it significantly alters relationships and professional options. For Mom, it took her out of her career, stole her vision, her appetite, her strength, her privacy. But it made her little life much bigger. Earlier this week we were reading yet another loving email from someone Mom hadn't heard from in over 25 years. Hadn't thought about in over 25 years. And I commented how much of an impact she had made that this person not only sent their regards, but continues to do so. Continues to bring Mom's memory and image to the forefront of her mind and wish for healing. Continues to send strength. From her little life.

In my own little life, I have received more gifts in the past three months than I know what to do with. I am humbled and grateful and honored. And bewildered, because it is not in my nature to receive. I am determined to practice gracious acceptance. I often fumble, say the wrong thing, attempt to refuse and put my foot in my mouth, but I'm trying.

I'm not sure if I'm conveying what I want to here. I guess what I really want to highlight is that I can't think of Mom's illness as a tragedy. She gets the opportunity to expand her life through this, to receive well wishes and love from across the country, from seemingly everyone who has ever met her. I am so upset about the earthquake and tsunami in Japan today. Hundreds of people lost their lives in an instant, without warning, without even a chance to receive the gifts and love that my family has. That is a tragedy. That is a disaster.

Today my parents practiced dancing for my wedding as Mom's physical therapy. Please don't tell me that's tragic. In their own little lives, today, for a moment, there was joy.

Thursday, March 10, 2011


This will be a brief post because I'm waking up very early tomorrow morning. Today was our meeting with the Gastroenterologist and our Oncologist. Both recommend that mom stays off a feeding tube. The risk is just too high for what little rewards it could provide, if any. So mom is going to really focus on eating well. She has been doing a pretty good job lately. Hopefully her weight can stabilize before we start the next round of chemo, which we will start either the week after Aynsley's wedding or the first week of April.

It's crunch time for me in school. I will have to be studying almost the entire weekend. But after Wednesday, I will have a full 10 days to spend as much time at KGH as possible. I can't wait. Spirits are still high and mom is as sweet as ever.

Wednesday, March 9, 2011


The views of Mom's room.

In the left corner of the bottom photo, you may notice a large blue thing hanging from the ceiling. That's an enormous crane, made from wrapping paper by my cousin. The colorful artwork in the center of the wall was done by Gary's godson and his two adorable brothers-they not only colored it, but they punched little holes alongside the pictures and their names so Mom could feel them.

Cranes hang from every available surface, and if the surface isn't too available, we improvise (duct tape, anyone?). Every time anyone walks in here for the first time, or after a break, they always comment on how beautiful it is, how everything is so colorful. They always ask who made the cranes. I'm so glad we have them all up and that the room is festive, colorful and full of good wishes. But it's also hard that Mom can't see them. Every time someone comments, I know she feels the sting of not being able to see them, to enjoy the things that bring her pleasure.

I didn't stay over last night even though it was my turn because I had an early work call this morning. And of course the night was rough: Mom had stomach cramps and pain a lot through the night. She didn't take her daily does of morphine because she was uncomfortable, and then felt the morphine missing around 1am. So, now we know, the decrease in dosage was good, but she needs it every 24 hours. When I arrived later this morning, all of that was behind her and she was about to start another intense PT session. Today she did a lot of sitting to standing transitions. They are SO smooth and strong! She must have done 10 of them and each one was perfect and unassisted. It's so great to watch her do functional exercises that will get her on the path to autonomy. She was energetic all day until the tail end of OT. She typically has PT around 10:30am and OT around 3pm. Around 3:30, after stretching her calves, she literally sat down on the bed, pulled her feet up and fell asleep. I've never seen anything like it, but she quite literally fell asleep.

I'm staying over tonight, one last girl's night before I go back to New York.

Tuesday, March 8, 2011


Bath day! At KGH, bath/shower day is once a week and done with an aide. I drive them crazy, always butting in: draping Mom with dry towels during the shower to make sure she doesn't get cold, washing her hair while the aide is washing her feet, bringing in Aveda cleanser...Today I brought her loofah from home; her skin is very dry and flaky, and I wanted to slough some off. I'm sure the staff is counting the days until I go home (for the record, 2) and they can go back to doing things the way they're comfortable doing it. But in my defense, the one shower Mom had at the hospital when I wasn't there was horrible-she was freezing. So bad that it took me two weeks of convincing her that I would keep her warm if she let me do it before she agreed to take another one. So I make it my business to constantly ask if she's warm and bring in extra towels. I know I'm annoying and I don't really care.

The shower was the big morning activity. She also had another strong PT session, using 2 pound ankle weights as she did leg extensions and hip adductions from bed. After a strong nap and a great lunch, she was in the mood to listen to music and catch up with her friends. She sent texts to friends she hadn't seen in awhile and called a friend from work. She called her coworker to get another former coworker's address (who sent a gorgeous and delicious fruit basket), but when all of her colleagues heard that she was on the phone, it got passed around. Seeing her light up when she talked to everyone was wonderful. You forget how much of an impact the people you work with make: Mom used to work 10 hour days, she spent a lot of time with these people. I know she's missing her former life, the sense of purpose that going to work gives you, the reward of the weekend, the routines. I was thrilled that she got to talk to everyone, it really made her day.

Something work related that I haven't mentioned: her boss dropped by last weekend with an amazing gift. On September 11, Mom and a team from Eddie Bauer completed a 60 mile bike ride to raise money for MS. Her boss matted and framed two photos from the race: one of Mom peaking a hill, with a huge grin on her face, and one of the whole team. She also included a group photo from a hike that EB did last spring. Around the matting, many of her coworkers wrote her messages. It's gorgeous, and full of energy and strength. I love looking at it and having it in her room.

In the afternoon, we went outside. The forecast said clouds and rain, but the day disagreed and sun shone through the windows onto Mom's arms. She felt it, and we decided to get a bit of fresh air. Since it was still cold, we didn't stay out for long, but I think just getting in a few moments of unrecycled air is a healing thing. She then had a fabulous occupational therapy session with weighted bars and balls. She is so significantly stronger than she has been; it's so wonderful to watch the progress. I'm really excited for her oldest friend (in length, not age) to come back in couple of weeks and see the progress-it's astounding and very heart warming.

Tomorrow is my last night spending the night with her for a couple of weeks. I go home on Thursday for about ten days, then come back to get married. Mom is finally getting excited about the wedding, which is excellent: the whole point of moving it up and having it at KGH is so that she can enjoy it.

Monday, March 7, 2011


The streak continues! We had more disruptions last night than we've had in the last week or so; I was almost getting used to sleeping well with Mom. Nothing serious, just some bathroom breaks and a blood draw at 5am.

Universally, blood is drawn before the crack of dawn. The vampires always peek in the rooms between 4 and 5am, apparently to get samples off to the labs before the doctors begin their rounds. Today was a draw to see the infection's progress (or hopefully, lack thereof). There will be another blood draw on Wednesday morning, just to make sure that the infection is gone for good. I'm still a little concerned about that fever from Saturday, but it seems to be gone, so I should really stop worrying about it. There are enough real things to worry about.

In spite of fragmented sleep, Mom was upbeat, alert and strong today. Her appetite has been great the past two days and today she ate about 80% of her lunch: lamb stew. I am beyond excited that she ate and enjoyed the lamb. It seems like the perfect meal for her right now. She's about 93 pounds and always cold (today wearing a fleece hat and fleece jacket in bed with two blankets on and we have the heat way up!!), so lamb stew just seemed so nourishing and rich and warming to me. She must have agreed, because she was way into it. For a snack, she devoured half a large orange. And some grapes.

Physical therapy today was similar to yesterday: walking to the gym to ride the bike, then exercises in her room. She's visibly stronger the past couple of days, getting herself up and down from bed, standing with more stability. Last Friday, I noticed that her left foot was externally rotated while she was walking. In essence, her feet were making a wide V. I'd never seen Mom do that before and I mentioned it to the PT. She told us that it's a way to gain more stability and that our bodies will do that when we're off balance. So, Friday she was feeling so off balance that her legs were repositioning themselves to give her more stability. And today, she was plowing down the hall, lifting her legs up high with each step and both feet pointed firmly forward.

She also got weighed today, a process that involves standing on her own, on an uneven surface (the scale), while holding a very narrow bar in front of her (not at all like the stable position of a walker). She was weighed last week and shook the entire time; I basically held her upright from the hips. Today she didn't need any help-I kept my hands hovering around her waist, ready to spot her, but she didn't need any help.

The other bright spot that I haven't been mentioning because I haven't wanted to jinx it is her vision. There is progress there. A couple of days ago, I was holding a cup of water for her, getting ready to hand it to her and she grabbed it exactly where it was. When I asked if she saw it, she said she saw the shadows. Yesterday while in bed, a beam of sunshine landed directly on her face and she said "is there sunlight on my left eye?" Indeed there was. She could see it. And today, while Dad was kneeling in front of her, she saw his face. She couldn't make out any specific features, but she reached out and touched him exactly where she meant to. Beautiful.

All in all, things to celebrate. Here's hoping the infections are long gone, that the shadowy vision continues to narrow and focus and make way for sight and that the weak days are behind her.

Sunday, March 6, 2011


Today was as good as yesterday was bad. When I arrived at KGH at 10am (with triple shot nonfat vanilla latte and reduced fat cinnamon swirl coffee cake for Dad), Mom was alert and chatty. About 30 minutes after my arrival, the physical therapist arrived and Mom had her most intense session to date: squats, calf raises, high knee marches (where she lifts her legs up as high as possible, usually about half an inch off the ground), then a walk down the hallway to the gym, where she rode the bike for 10 minutes, then walking back to her room, then another round of squats, calf raises and high knee marching. The therapist capped it all off with some nice stretches and a bit of massage. All in all, about a 45 minute workout.

Later in the afternoon, Mom told Ross that she visualized riding along Lake Washington Blvd as she was riding the bike.

When she was finished with PT, she got back in bed to relax for a few minutes before lunch was served. She ate the largest portion I've seen her eat since diagnosis. Lunch was fried chicken, mashed potatoes and corn; Gary was jealous. Mom ate 90% of her chicken. I have NEVER seen her eat more than half of anything on her tray, and half a portion is a big deal. Eating so much was awesome. She also had a good amount of corn and potatoes. The she had some bagel, cream cheese and lox for an afternoon snack, then bites here and there of dinner: some of my salad, some of Dad's pizza, a bite of the blintzes that were provided...

Seattle weather was beautiful today: clear, crisp and glimpses of the sun. I got in my first run of this trip this morning before I came in and Mom got a little fresh air. We bundled her up in her Sisterhood of the Traveling Wool blanket, my mother-in-law-to-be's shawl and another healing shawl that was knitted for her and went out to a little courtyard. Despite all the layers, Mom was cold, so we did a quick lap, then came inside. Still, I have no doubt that the fresh air is healing.

Finally, a nap around 3pm.

The rest of the evening Mom was alert and pain-free. Dad and Ross left around 7:30, leaving us to another girl's night slumber party. We did some hip opening and hamstring stretches, listened to her book club book and talked more wedding details. She teased me a lot. I deserve it.

Saturday, March 5, 2011


I'm not gonna lie, today was rough. Mom was awake and alert in very small batches today. She slept well, waking at 1:30, then not again until 7am, when she ate a meager breakfast and fell back to sleep. Around 9:30am, she woke up again, ate two more bites of breakfast and napped again. She was up from 11:30-12:30, when she ate about half a cracker with brie and a bite of bagel and lox, then back to sleep again for the rest of the day, only getting up to go to the bathroom, until I left the home at 6pm. She's also running a low grade fever: 99 point something; they gave her two Tylenol and it dropped, but that scares me. Tomorrow is her last day on antibiotics, so the infections should be gone. They will take blood samples on Wednesday and on Friday to make triple sure everything is cleared up, then discuss when chemo will begin again.

If the infection is gone, why does she have a fever?

Chemo is contingent on the infections clearing up: they won't start it again until all of her blood counts are exactly where they need to be. So we're already two weeks behind in treatment; not sure how much of an impact that will have. The other confounding factor is the wedding; the oncologist may want to wait until after the wedding to start chemo up again-it's risky to have her blood counts drop (as they will on chemo) and then be around so many people. Plus, she'll feel like crap, which isn't the way you want to spend your daughter's wedding. Still, I wonder if that's such a good idea. Mom was responding so well. Granted, the infection is something that's non-negotiable, but using the wedding as a stall...that seems like a gamble to take. My parents are meeting with the oncologist this Thursday and will surely get more information then.

The nausea has subsided. So, though Mom was extremely fatigued today, she wasn't nauseous. Count that in the positives.

To be perfectly honest, this trip has been difficult for me. I'm the most fragmented than I've been since this all began: trying to get things done for the wedding, trying to finish work projects (tonight I finally completed a curriculum that I've been trying to write all week tonight-hence leaving at 6), trying to stay overnight as often as Dad will let's exhausting. Everyone is exhausted. If I hadn't made a commitment to blog every day, I wouldn't have written at all this past week. The wedding will be over soon, which will be a relief. A happy relief to be married to Gary and also a relief to be able to focus more completely on Mom and the rest of my family (Gary included).

Friday, March 4, 2011


I've developed my own method of medical explaining. I've decided that the recent bouts of nausea are a result of morphine withdrawal-in the last few days, Mom has cut her morphine intake by 50%. Huge when you consider that for over two months, she was on a LOT of it. The great news, of course, is that she isn't in any more pain than she was with the higher doses of morphine, so tapering off is great. Today was the least nauseous day-only a few minutes towards the end of the night as she was taking her last pills. But she told me she really wanted to keep them down, so she did.

I've also decided that the morphine leaving her system has alleviated a lot of the stomach problems it was (may have been) causing, so she'll be able to take fewer pills in the long run. Pills are by far the hardest thing to swallow, literally and figuratively. When she finds out she has more pills than she thought, the disappointment is obvious and heartbreaking. The only time I've heard anything close to a whine was one night when a nurse brought them in after I told her I thought she was done. So less is fabulous.

Eating continues to be a struggle. We hit meal jackpot #1 yesterday with corned beef, today we hit it again with manicotti. Manicotti used to be what Mom made for company. She would cook the pasta tubes and after they cooled, we would stuff them with a ricotta based stuffing that was delicious. I have very fond memories of sitting at the kitchen table, stuffing pasta with special long narrow spoons, and just being together, looking forward to spending time with each other and the company we were entertaining. Today's serving was two pieces and she ate all of one and a few bites of the other. Great for her, but still a small portion in the grand scheme of things.

She lost another pound this week; the term wasting constantly floats around my head.

Next Thursday is the appointment with the gastroenterologist. I will be on an airplane headed back to NY at the time. It's sort of poignant-it's the one time that I can not be involved and it's an appointment that I so want to be involved in. I considered changing my flight to a day later or a day earlier so at least I could be on the phone, but stopped myself. There are things I'm going to miss. I need to get used to that now and trust that everyone is 100% capable of making decisions without me.