Wednesday, August 31, 2011
September beckons. Crazy how this year has both flown by and stood still. I feel as if I've lost time. I hold images of salient moments: clasping Mom's hand as she underwent brain surgery for the first time, huddled with Ross and Dad in the freezing prep room, terrified that she wouldn't come out of it, astounded by how sure she was of its success, she has now endured so many more surgeries, I no longer worry about the emotional trauma of her body being subjected to the knife; a mad dash around midtown Manhattan, searching for corned beef, black and white cookies and pashminas to bring as gifts before my second trip to Seattle, when she was still in the hospital, knowing now I was trying to make up for my guilt at having left her, as if NYC souvenirs were what she wanted or needed instead of my presence; Mom's birthday party at the Kline, just as she planned it, milestone #1 that we weren't sure she'd make; her room full of cranes and crochet and knitting and drawings and crystals and fleece hats, all symbols of love and well wishes from near and far flung friends; my wedding and visiting with two pregnant friends, in the blink of an eye, they now have gorgeous healthy infants and I find myself where they were then, hoping for an outcome as beautiful as theirs; Mothers Day and telling my family we're expecting; Fathers Day and not being there; JFK, the flight with TV or without TV, SeaTac, TSA, long security lines, short security lines...But there are some things I just don't remember. Long gaps of time that I can't quite believe happened. September tomorrow. Crazy.
Mom has been tired. Perhaps chemo. Perhaps the leaking. Perhaps other unknown factors, though the fatigue has been much more apparent since a couple of days after chemo. Mom had PT today and walked with the white cane and did some other exercises, but tired out quickly and wasn't able to push as hard as last week. Which is fine! She's still getting stronger. Walking with that cane is exhausting. The first week after treatment is usually rough. I'm not worried about the fatigue or lack of appetite-she's faced that before and come through every time. Actually, that's true of the leaking incision, too. I just worry about that because I know she's not up for another brain surgery. It would be best if she could avoid needing it.
Also, a correction from yesterday. At Urgent Care, Mom did NOT see the neurosurgeon, it was the physical on call. Sorry. And please use this as yet another reminder that nothing I write should be taken as fact-this is all my perception of reality, my side of the story. Written mostly from 3,000 miles away.
Tuesday, August 30, 2011
It's always a roller coaster. We were all riding so high after nearly three solid weeks of Mom improving, feeling well, eating, resting and setting stronger. Last night, her incision site started leaking a small amount again. Dad called the nurse immediately, who covered it with sterile gauze strip and monitored it all night. This morning, the Kline doctor (who I may not have mentioned yet, but we love her, Dr. H) looked at it and saw that the gauze had definitely absorbed some fluid.
Back to Urgent Care.
Once there, the staff didn't see anything leaking, but Dad insisted and they were able to see the neurosurgeon. He again applied medical "superglue" and then wrapped Mom's head in a compression bandage, a la a toothache from the turn of the century. Not particularly comfortable, but there's been zero leaking since. And a nurse at the Kline fixed it tonight so that it doesn't go under her chin and is more like a tight headband.
Mom's head hurts.
The good news is that she was able to get a lot of rest today-they were back at the Kline late this morning and Mom had a constant stream of visitors who made sure she slept and rested. She left me a groggy voicemail this afternoon, but by evening sounded more alert and was even eating a little bit of spaghetti and salad.
Ross is spending the night, which is good news all around. He hasn't had that pleasure in a long time, and believe me, it's wonderful. Plus, in theory Dad will get a bit more sleep. He'll definitely get a shower, which is a perk even if he doesn't sleep more than usual. Mom will definitely get to sleep in a little bit more than usual, which is perfect timing.
We're wondering if the massage may have something to do with the leaking. It makes sense that after being flat and face down, with the intention of getting things moving, leaking could start. Mom decided that her next massage will be focused on her lower body. Her ankles and calves are constantly tight and need work and that will be safer for her head. I'm just happy whenever she sets an intention for the future.
Monday, August 29, 2011
Whew, what a day! Typical Monday: back in the swing of things. Mom started the day with an hour of qi gong, then worked out with her physical therapy assistant. She took a long walk (again, no walker anymore on these strolls), then went to the gym for 20 minutes on the bike. Her longest ride yet! And then, more walking. And that's in addition to all of the stretching and strengthening exercises. Then both my parents were treated to massages. So lovely. They were each on the table for at least an hour and said they felt so good after. And Ross timed his arrival perfectly, coming in as Dad was finishing his massage, so Ross got a mini massage, too. Back at home, I jumped on the indulgent body work bandwagon and had a great acupuncture treatment.
Mom's appetite has been minimal since yesterday, so she's working on stimulating that. Everyone keeps throwing out food suggestions that may sound appealing; I suspect it's going to take a few more days before she really feels like eating much again. But in typical fashion, despite not feeling like eating anything, she still manages to get nourishing bites in whenever she can. Mind over matter. As is everything, really.
Sunday, August 28, 2011
Mom started feeling the effects of her chemo treatment today: low energy and low appetite. She described it as just not feeling great, not terrible by any means, but just sort of blah. Luckily she had ample napping opportunity and was able to really lay low. We'll see how tomorrow goes with starting back up again with PT and the usual Monday grind.
Back in Brooklyn, I had an anticlimactic first hurricane experience. Exhausted from travel and anxiety, I slept 10 hours last night, completely missing any wind and rain that swept through our streets. I woke up hearing the fan in our bedroom and knew that we hadn't lost power, which was my biggest concern. The first thing I did was text my parents letting them know everything was totally fine-they had slept far less than me, watching the news and worrying about their granddaughter. Maybe that was a factor in Mom's fatigue, also! Our street was strewn with leaves, not even tree branches; overall, nothing scary. All the nearby gyms, restaurants and transportation options were closed all day, so I was able to spend more than 24 straight hours with my husband. So nice.
Saturday, August 27, 2011
I'm feeling very lucky today. I was able to get a flight into NYC a few hours ahead of the city completely shutting down; the Jetblue terminal this morning was pretty crazy. About half of the flights on the reader boards were listed as cancelled and the airports all shut down at noon. The plane I was on usually turns right back to Seattle, but today I was on its last flight.
My parents (typical Jewish parents) have been worrying all day. Take normal Jewish parent anxiety and quadruple it due to my pregnancy: we have spoken on the phone three times today and texted in between.
Mom had a great day. She was able to sleep in and spend a lot of time in the gorgeous Seattle sunshine. She took a long walk with my dad without her walker, and then rode the bike in the gym. One day post chemo: amazing. I'm so happy she was able to get the chemo on a Friday; the weekends are definitely recuperative for her and it's great for her to have two full days of rest if needed. Though today she exercised as though she had a workout with her physical therapy assistant. It's astounding how strong she is and how well she's feeling.
The rest of the day my parents sat glued to the TV, watching Hurricane Irene batter the coast and worrying about Gary, me and the Pea. We are all fine as of now: it's barely raining and we have lots of provisions. If you're on the east coast, stay safe!
Friday, August 26, 2011
Thursday, August 25, 2011
Wednesday, August 24, 2011
There is a fine line between eating a little bit more than you'd like to and eating too much. Mom crossed it today at lunch and battled nausea the rest of the day. She constantly struggles to maintain her weight and arrest the weight loss (as of yesterday, she's down another pound, which she insists isn't true, but I'm not so sure). Despite not being hungry most of the time, she'll always make an effort to eat and try to eat past feeling satisfied. Today was no exception, but it pushed her over the edge a little bit. Also, this morning she refused her morning Zofran, which may have played a role in the afternoon queasiness.
Despite not feeling her best, she still walked a lot without her walker, rode the bike for 15 minutes, sat in the sun for a couple of hours and napped like a champ. This morning she wanted to exercise standing up at the side of her bed, so I acted as spotter as she walked in place and shifted her weight side to side without her walker or any balance help. So awesome.
Tuesday, August 23, 2011
Today I got tested out by the physical therapist and am now cleared to walk with Mom. Though I will wait until tomorrow to test my skills unaided. Mom walked with her PT and the white cane again today and her PT noted improvement in balance and strength. Walking with the cane is exhausting: it's heavy, it requires a lot of concentration and it doesn't provide any stabilization: Mom needs to be in control of both it and herself. After tiring of the cane, Mom walked with me as her guide and the PT supervising. No walker, no assistance, just me holding the gait belt and Mom's arm to guide her directions. Pretty amazing.
After PT, Mom slept for about two and a half hours. It was wonderful-a long, uninterrupted afternoon nap. After that, Ross joined us and we spent a couple of hours outside in the sunshine and warmth, eating apricots and nectarines, talking about family. Glorious.
Mom also had the stitches taken out of her head today, finally. She was afraid it would hurt, but it went smoothly and so far, everything is staying sealed up and the CSF is staying inside her body, where it belongs.
So, in Mom's words:
Had a wonderful day--had both Ross and Aynsley here today, what could be wrong?
Monday, August 22, 2011
I finally landed about 9pm last night after a really freaking long day. I attempted to make a 7:45am flight, which took on every standby customer in line up to me, then was full. After a fairly major meltdown (please remember I am 5 months pregnant, had woken up at 5am to get to the airport and spent $50 on a cab because trains don't run that early on Sundays) I went home, went for a run, ate lots of broccoli for lunch and took the train back to the airport to wait for the 3:45pm flight. After another round of anxiety about getting turned down, I finally made it on the flight, last passenger on, in the last row. They made me check my carry-on, but I was so happy to be on my way to seeing Mom that I didn't care.
Then we were delayed for two hours.
Dad graciously picked me up at the airport and we were back at the Kline by 9:30. After hugs, kisses and some baby talk to my belly, Mom and I were asleep by 10. We slept until 5:30am when we finally needed a bathroom break. It was awesome: more than 7 hours straight. I don't often get that much consecutive sleep at home! Mom continued to sleep for the next few hours, which was nice. She got her pills down easily, ate all of breakfast and did about an hour of chi gong. Then lunch, which she ate almost all of (chicken, rice, green beans) and then a work out with the physical therapy aide. She walked up and down the hallways without a walker, only holding on to the PTA’s arm. Then she rode the bike for 15 minutes. Then more walking and stretching. Then a nap.
In the late afternoon, she snacked and did more exercises on her own. She looks stronger and healthier to me than the last time I was here, which was before the hospital stay. She skin has cleared up from the radiation, her hair is thick and growing into an adorable shaggy style, her gait is strong, her balance is solid and her mood is, as always, excellent.
Sunday, August 21, 2011
Saturday, August 20, 2011
A perfect Saturday: sunshine, friends, lots of naps and a restful day. Mom is feeling well, which makes all of us feel better.
Interesting article on the front page of the NY Times today about drug shortages. Mom is scheduled to receive her next Doxil treatment next Friday, but many others throughout the country don't have access. http://www.nytimes.com/2011/08/20/health/policy/20drug.html
Friday, August 19, 2011
Thursday, August 18, 2011
Mom's new PT assignment is to walk with family members when she's not walking with her therapists. At some point in the next few days, each of us and some close friends will be tested out by the physical therapist to make sure we are capable of walking with her. I love this plan. I love that, despite the setback, Mom is now advancing beyond where she was before the recent surgery. I also love that I'm going to get a lesson in how to assist with Mom walking and then have to prove my competence.
Needless to say, today's PT session was another good one. Mom is constantly working on balance and stability, in addition to strength and endurance.
The weather was also perfect for some afternoon lounging and vitamin D absorption, so Mom hung out in the sunshine for a while this afternoon. I forgot to ask about her swallowing, but I haven't heard it mentioned in a few days, so I'm going to think that no news is good news.
Wednesday, August 17, 2011
Another good day for Mom. Lately, when I talk with her, she's less groggy after waking up and sounds more upbeat in general. Her BFF was with her this morning and texted me when she left that Mom was SO much stronger than when she last saw her-it was thrilling. I can hear it in her voice and am so excited to see her in person.
Last night after I posted, family brought by Thai food for dinner. Mom said it was the first time since leaving the hospital that she's been excited about food, and she thoroughly enjoyed it. I didn't know she hadn't been having much of an appetite, but I was happy to hear that she was excited about eating. I know it can be a chore and I imagine that things don't taste the way they used to all the time, so the image of her enthusiastically eating something is extremely heartwarming.
Tuesday, August 16, 2011
With the Seattle crew back safely home, Mom enjoyed hearing Ross's interpretations of this past weekends events. And Ross enjoyed being back hanging out with Mom.
Today was a lower key day for Mom, which she enjoyed. She worked out with the PT assistant, which is always good, but not as challenging as working out with the physical therapist. The schedule is actually really good: Mom works with her fabulous PT on Mondays and Thursdays, which is a lot of balance work and constant progress. It's always a push and it's always hard. Tuesdays, Wednesday and Fridays, she works out with the lovely assistant, who takes her walking and to the bike and also does a lot of general functional exercises and stretching. These workouts are challenging, too, but less intense than Mondays and Thursdays. They are also not taken out of her limited PT sessions, so she is able to stretch those out a bit. Weekends are rest days, though sometimes she'll walk the halls or outside if it's nice with family and friends. She is constantly stretching and doing upper body exercises too.
So, today after a good workout, Mom enjoyed sitting outside and got in a good nap. And then caught up with Ross. I'm planning to head out this weekend and very much looking forward to catching up myself.
Monday, August 15, 2011
As predicted, today brought hard work. But it was good work: Mom walked with the white cane again today. This is the cane that rolls at the bottom so Mom can feel if there is anything in her path and avoid it; it does not provide any support to her gait or balance. After about a week and a half, she has made considerable strength gains. She said it was difficult and she still struggled for her balance, but that's huge progress. And honestly, she struggled for balance before the week at Overlake, the first time she used the white cane. It's new-of course it's hard.
Sunday, August 14, 2011
Another restful and relaxing day for my parents. The weather on both coasts called for a lazy day with naps and warm food and my parents were happy to oblige. (Gary and I couldn't quite nap, but we sure were lazy!) Mom sounded great. This weekend was so relaxing and restorative, especially compared to last weekend. And after a week of hard work in physical therapy and seeing improvements from her last stay in the hospital, it was easier to enjoy the break. I know she'll be ready for the upcoming week of more hard work.
Saturday, August 13, 2011
Today was a good day. My parents both slept in and had a relaxing, leisurely day. A dear friend came at 10am to spend time with Mom, allowing Dad to get out to the driving range and then home to shower. They enjoyed lunch with more friends, and Mom got in some great naps. I'm always happy when I hear of these restorative days, especially when Mom sounds happy and rested and not exhausted.
Gary and I celebrated our marriage with a New York reception that my fabulous in-laws hosted. Ross and Claudia, plus some very special people from Seattle, California and Chicago were in attendance in addition to our NY/NJ family and friends. It felt funny to be the pregnant "bride" but it was such a great opportunity to see many of the people that I've been missing with my frequent cross-country trips. Gary's extended family and friend network is very much like mine and it was an amazing day to be surrounded by love. And my parents received text messages, emails and video updates of the party: the speeches, the Beatles cover band (oh, yeah-that happened), and the many many well wishes for their future granddaughter.
Friday, August 12, 2011
Mom had her best day yet since being out of the hospital. She can tell she's making strength and balance gains and even though she's not nearly where she wants to be, she can see progress and that's encouraging. Hearing her say "I'm feeling good" when I ask how she is is pretty great. I'll take it any day.
Thursday, August 11, 2011
Ross spent the night last night with Mom, which is always such a nice thing for so many reasons: Dad gets to sleep at home, shower before going to work and unwind a little bit; Ross doesn't have to wake up early so both he and Mom can sleep in as long as they want; Ross gets lots of quality time and Mom and vice versa, etc etc.
So, sleep in they did. And when Mom did wake up, it was a little easier to swallow than yesterday. Her x-rays came back clean and clear, so that's good news. I suggested that maybe there's something in the room air and if she sleeps with her mouth open, she inhales it and that's what's causing the difficulty. She doesn't think so, though.
The day was a good one: a challenging but rewarding PT session, including 15 minutes on the bike and a bit of a wobbly walk, but still a walk; an afternoon soak in the sun with some friends; an uninterrupted nap in the afternoon...her voice is clear and strong.
This weekend will be a little emotionally challenging: Gary and I have our NYC wedding reception on Saturday. I know my parents are disappointed to miss it and I think it's a reminder or a manifestation of all the things she's missed so far and is going to miss. We also have an ultrasound scheduled for tomorrow and it's just hard that she can't see the pictures of her future grandchild. I'm hoping that our little Pea (as fetus Cohen is known around our house) will be kicking rather aggressively by next week and she'll be at least able to feel the movement since she can't see the growth.
Wednesday, August 10, 2011
Mom's swallowing is the same as yesterday. She had a visit from the speech pathologist who recommended swallowing between bites of food, drinking liquids between bites and eating slowly, which Mom has no problem with. She was able to eat well today, just slowly and with lots of extra swallows.
Mom also worked out with her physical therapist today for the first time since coming back from the hospital. The main issue aside from all of the strength loss is that she lists to the left when she thinks she's upright. So she worked really hard today on relearning where her body should be in space. Balance is so difficult when visual cues are missing.
Tuesday, August 9, 2011
- Last night's Book Club meeting was "awesome." No one really liked the book, but Mom loved getting together with everyone. I haven't heard her that enthusiastic about anything in a long time.
- Additional physical therapy sessions were approved by insurance, so Mom will get to work with her fabulous therapist some more times. Very exciting amid the strength and balance setbacks
- Mom woke up with a new inability to swallow. The doctor took chest X-rays and tested for thrush to investigate. Results should be in by Thursday. She was able to get one pill down all day and managed to eat a bit of breakfast and lunch-very soft food, very slowly. For dinner she's planning on dining on Chef Bob's specialty: PB&J
- Mom was pretty nauseous and tired all day. She declined an exercise session with the PT aide and instead tried to rest and fight the nausea. Luckily, she takes the anti-nausea medication through her chest port and doesn't need to swallow.
Monday, August 8, 2011
Book club night! Though Mom (and Dad, who gets to listen in as Mom reads) weren't thrilled with this month's selection, it's always nice to have the group over and discuss. Mom looks forward to it-it's a relic of her not-sick life and it's important.
Again construction noise prevented Mom from getting any rest during the day, but it began at a reasonable 9am instead of 6:30am like yesterday. Finally in the later afternoon it was quiet enough for a nap, which she took advantage of. While she awake, she exercised with the physical therapy assistant: walking with assistance, stretching, strengthening exercises and riding the bike for a very respectable 12 minutes. I know her strength is not what it was before her most recent stay at Overlake, but today's therapy session sounded excellent.
On another note, as I was reading last weekend's Times during breakfast this morning, I came across this op-ed piece about the cancer drug shortages. From a political and business perspective, it's an interesting read. From the patient perspective, its very topic is just infuriating and heartbreaking.
Sunday, August 7, 2011
Saturday, August 6, 2011
Physically, Mom is struggling. Her mobility is significantly impaired since her most recent stay at Overlake and she's frustrated by how much strength, balance and perception she's lost. When she thinks she's sitting up straight, she's actually slumped and listing to one side. She doesn't have any visual cues to go on, so it's all on feeling and that's warped. We keep trying to reassure her that it's normal, that she'll be bale to regain everything she lost and then some, but sometimes just being at the bottom of that hill, again, is too much.
The plus side is that the pain of the surgeries has diminished significantly and she's been able to eat and rest more. And, of course, that's the cornerstone to getting her strength back.
Friday, August 5, 2011
Back at the Kline, Mom had another busy day. She had an assessment with her fabulous PT, and the overseeing doctor came in, too; we're hoping that Mom will be able to get a referral from the doctor from more physical therapy sessions so she can get back the strength she lost and pick up some of the momentum she'd be gaining.
Here's hoping for a restful, relaxing weekend. It's been a rough week.
Thursday, August 4, 2011
Mom had a comfortable night back at the Kline and is happy to be out of the hospital. Unfortunately, staying immobilized at a 45 degree angle for four days drained a lot of her hard-won strength and balance and she was very frustrated today when she tried to walk with her walker to the bathroom. She struggled a lot. Everyone has been assuring her that the strength will come back quickly, but she's still discouraged. Understandably so-it's so hard to go backwards in anything. But she was determined to keep walking to the bathroom, so she did and truly that's why her strength will come back quickly.
Though she is back in her original room, construction hasn't stopped throughout the building and the Blue Angels were flying and will continue to do so all through the weekend. Naps will be hard to come by, but I'm sure she will take advantage of any and all opportunities.
Wednesday, August 3, 2011
Today brought good news:
- Mom was discharged from Overlake and is en route back to the Kline
- Mom's cerebral spinal fluid was biopsied and NO traces of cancer were found. So there's no discussion at this point about re-implanting the OMaya Reservoir to continue intrathecal chemotherapy
- The Doxil shortage shouldn't really affect Mom's treatment; it should be back in supply by the time her next dose is to be administered
- Mom sounded a million times stronger on the phone tonight
- The pain of the surgery continues to subside. Mom will stay on pain medication for at least a few more days, but it will probably taper off as the pain lessens
Tuesday, August 2, 2011
Today was better than yesterday. Mom slept a lot, but when she was awake, she wasn't in as much pain. Dr. L, our fantastic neurosurgeon, removed the lumbar drain this afternoon. He said that everything looked good, that less fluid was draining over time and he was very pleased with the results of the surgery. We are ALL hoping that this is the end of the seeping head wound and Mom's cerebral spinal fluid stays inside her body from now on.
My parents may stay in the ICU again this evening if there aren't adequate accommodations on the regular floor. But if there are, they are able to check out of ICU. The plan is to go back to the Kline tomorrow at some point, which they're both looking forward to. And they're hoping to be back in the original room, which is even better-it's about 20% bigger than the room they were in while construction was going on and Mom knows the layout much better.
Dr. C stopped by yesterday to deliver a bit of bizarre news: there's a Doxil (the chemotherapy drug Mom takes) shortage in the United States. We aren't sure yet what this means for Mom's treatment, but it will likely interfere in some way. My parents have an appointment set up for next Monday to discuss with him and will obviously have more information then. According to my google search, it won't be available again until late August, and then in intermittent amounts. In my mind, the good news is that Mom only takes it once a month and she just had it last week. So she's not even scheduled for treatment until end of August. But we'll see what Dr. C says-I can imagine many people nationwide are terrified by this prospect. Mom feels like we're in a better place than many others and feels fortunate for that. In classic Flynne mentality, she takes bad news and sees it in a positive light.
Monday, August 1, 2011
Today, in Mom's words: sleep, wake up for a pain pill, try to eat a little something, go back to sleep, wake up to take a pain pill, then go back to sleep. Repeat.
She was able to get a lot more rest today than yesterday, but was pretty worn out from a constant stream of visitors over the weekend. We're hoping to keep visiting to a minimum while she's in the ICU so she can get the rest she needs.