2.6.11

AYNSLEY:
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!

marijuana clarification

AYNSLEY:
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.

2.5.11

ROSS:

Mom's weekend physical therapist noticed some great improvements from this week compared to last. Which was great to hear considering she still has not been eating well. She might have had around 5 bites of food today. Her lack of eating is due to several things: lack of appetite, nausea, indigestion, and also, a sore throat. She believes this is a result of all the pills she has to swallow. I was really worried that she was getting a cold, but her symptoms seem to be getting better, and she is most likely not getting a cold. That being said, I really want to stress that all visitors pump some hand sanitizer on their hands before they touch mom (we've got some in the room)! I had to spend three days away from Kline Galland so I could get over a cold. It was really really hard to do. I really wanted to be there. I thought I could come and just put on a mask and sit in the corner, but mom wouldn't let me. She is the wiser of us. Now that I am feeling better, I am really glad that I wasn't here. I'm glad that I didn't compromise her health in anyway. It's a hard lesson to learn that sometimes the best thing you can do for someone is to be away from them.

We said goodbye to Aynsley tonight, which is always really hard. She is such a strong force and advocate for mom, and she runs a real tight ship (which is truly needed in this situation)! But Aynsley would not be Aynsley if it weren't for the life she leads in New York. People there need her, and we need her there too, so that when she returns, she can come refreshed and focused on being here for mom, and for all of us. Like I said, these are hard lessons to learn...

My main goal for tomorrow is to see her eating and drinking more. Please direct your thoughts and energy towards getting her appetite up. If anyone has some delicious food stories they would like to share (imagery, flavors, the best thing you ever cooked, any story revolving around food...), please feel free to share them here. Try to make her mouth water! I'll read her your stories and hopefully we can get her really excited about food. Let's get that appetite going!

2.4.11

AYNSLEY:

Another set back. Yesterday Mom woke up with a dry, sore throat that we thought (hoped?) was a result of the dry air in her room. This morning it was still there, a little bit worse but by tonight, it was bad. So bad that she couldn't swallow her pills. The nurse will take a culture tomorrow morning to see if it's an infection. Either way, it sucks. She's already so uncomfortable, and now this. Her immune system is compromised, so it's not surprising that she would catch a bug, but it's just bad news and we all hate to see her so uncomfortable.

This morning was the first morning she couldn't get breakfast down. No matter how lousy she felt, for the past two weeks, she has always been able to eat a good breakfast. She may not have eaten much the rest of the day, but breakfast was solid. Not today. Today she took two bites and was sick. The nausea diminished throughout the day; she was only sick in the morning and spent the rest of the day fairly un-queasy. But she only got a few bites of lunch and dinner in. The nurse practitioner (who is awesome, by the way) ordered her another fluid IV, which she hasn't had to have in about a week. But she's not getting enough fluids in to keep her safely hydrated, so back to the IV.

The physical therapist noted that she was stronger today than yesterday. I mentioned to Ross that the past two doses of systemic chemo that she had were closer together than they will normally be (Wednesday, then Monday, when moving forward it will be only Mondays and then a week off every three weeks) and that may be why she's feeling it so much. The oncologist told us the side effects would be cumulative, so it makes sense that she'd be worse this week than last week. The good news is that she doesn't need to have another system chemo treatment until February 14th. Which is a shitty was to spend Valentine's Day, but she usually feels pretty good on the day she gets the treatment, it's the third day after that it seems to really catch up. So I'm hopeful that she'll continue to get stronger and feel better throughout the next week and be strong for the next round of chemo. Maybe I'm making up medical rationales to make myself feel better, to help understand why she still feels so miserable. Maybe we're all grasping at straws, trying to keep hope. Maybe this truly is the ravages of chemo and once it takes it course, she'll have a break from the cancer and feel amazing. Maybe I should stop all of these maybes and focus on the moment.

Maybe tomorrow will be better. I really hope so.

My goals (hopes?) for her for the next couple of days are to have the sore throat clear up and not be anything scary serious and for her appetite to return. Tomorrow is my last day to spend with her for a couple of weeks. It's going to be so hard to leave. Gary always says I'm in an impossible situation, and it's true. How do you live a life that's split on two coasts, when you're needed 3,000 miles apart but at the same time?

2.3.11

AYNSLEY:

I booked my return flight home today: leaving very early Sunday morning to arrive home in time to go back to work on Monday after sleeping a full night. I feel relieved to be going home and horrible about leaving everyone here. But my life has gotten to be too much to manage from a distance and I know that all of our wonderful family and friends will step in during my brief absence. I hope to be back in three weeks.

Today was one of the days I predicted would come: worse before better. Mom slept nearly all day, but when she was awake, she was queasy and weaker. She still did PT and OT, but they were shorter sessions and she was tired. The OT session was at lunch and Mom ate precisely one bite of each food before succumbing to fatigue and nausea. She apologized to the therapist and went back to sleep. There wasn't any vomiting today, which was great, but she didn't get much food in, either. Once in a while, that's fine, of course, but we can't let it become a habit. She needs to keep her strength up.

We're all blaming chemo. And as crappy as she's feeling, she's still feeling better than before she was diagnosed, when she was in so much pain. She describes this feeling as almost morning sickness-ish, though of course without the rewards. The good news is that she has next week off from this chemo, so hopefully she'll start to feel better in the next couple of days and take the next week or so to really progress in physical therapy and occupational therapy. In the week she's been at KG, she's already gotten so much stronger. We all hope this will continue and maybe at some point she'll be able to really be an outpatient. Sadly, her vision hasn't changed, though we still refuse to accept that she'll be permanently blind. Yesterday the PT asked her what her goals were and she said "to get my vision back." So that's still Plan A.

2.2.11

AYNSLEY:

One of my favorite movies is Parenthood. You know, that old one with Steve Martin, Dianne Wiest and the delicious Keanu? Anyway, near the end of the movie, old grandma takes Steve Martin aside and tells him that when she went to the fair as a child, she liked the roller coaster. The merry-go-round just goes around the track, but the roller coaster gives you highs and lows. In the next scene, everything is going wrong and Steve's about to lose it when, all of a sudden, he chills out and realizes he's just on the roller coaster. It's a low. Then a high. Then twists, turns, drops, screams, laughter, tears and when it's over, you get in line to do it all over again.

When I graduated high school, Mom wrote me a poem. In it, she describes parenting: "just love and hang on." Now, maybe she was describing parenting me, which of course was a challenge, but I think that's really the best analogy to describe family. It's all we can do. Everything along this ride has been a roller coaster, but no one has ever considered getting off for even one moment. People have told my brother and dad and I that we are admirable for doing what we're doing. What on earth is our choice? Mom can't stand up on her own, of course we'll be there to help her up. No one signs up for this role, you are assigned it at random and you rise to the occasion. It's love. Just hang on.

I've learned a lot about family; that it's not defined by blood, it's defined by unconditional love. It's defined by choosing who you're going to support and show up for and how so so blessed I am to have so many people happily show up for me. All 50 of the people at Mom's birthday party offered to take Gary to the airport on a Monday afternoon and were disappointed when I told them I was going to do it.

I've learned about hope and how fragile and fluid it can seem, but how contagious it is. Every person who has emailed a story of remission or living with cancer seems to somehow sense that I need it right then: I've had a number of "losing it" moments derailed by my inbox signaling yet another beautiful story of life triumphing. I have watched my mom's faith falter, watched her slowly begin to accept this reality, watched her mourn her previous, healthy existence and feel fear. But she never lets the fear take root. She never doubts that she is doing the right thing, that fighting with everything she has is the only option, living is the only choice.

And fight she does. This morning she insisted on eating breakfast sitting up on the side of the bed, which is a great (and difficult) endurance exercise for her. She ate her entire bowl of cereal that had been mixed with protein powder, plus some bites of croissant and hard boiled egg this way. And then she went walking. 90 feet today, almost double what she did yesterday. The physical therapist kept giving her rest options and she wouldn't take them, she kept standing instead of sitting, did 12 squats instead of 10 and a second set of the dreaded calf raises. After the session, she slept. Lunch wasn't too tasty to her today, so she just had a few bites of snacks for the rest of the day. Then occupational therapy, where they worked on feeding herself and general upper body strength. Tomorrow's OT session is set for lunch time so they can work in depth on self feeding and get her some practical applications. I love the therapy staff here-they are amazing. So talented and caring and generous and wonderful.

Chemo is making its presence known. Mom is definitely tired-she slept a lot today, around working hard in her therapy sessions. She also vomited up the few bites of dinner she managed to eat (again, sitting up on the side of the bed) before nausea overtook her. She is on anti-nausea medication, but she's probably going to need to up the dosage or be more diligent about taking it at regular intervals. The good news is that after she was sick, she felt better. She didn't eat anything after that, but her mood was good and her pain was negligible. Oh, and I didn't faint. But we're gearing up for a long haul of chemo symptoms and know she'll probably get worse before she gets better. I keep reminding her that any time she wants a break, any time she wants to stop a treatment, if it gets uncomfortable or she just can't deal anymore, it's okay and we'll all support her. I'll be her advocate in anything she chooses. It's all I know how to do. Just love and hang on.

2.1.11

FLYNNE:

Once again, I am lost on the days. The days get so long in here, I have trouble distinguishing when one ends and one begins. I seem to remember a good night last night: we got a fair amount of sleep and didn't have to wake up too early. I had my cream of wheat and peaches for breakfast. They also had what we believed was a hard boiled egg, and I know I need protein, so I told Bob I would have some of the egg. He went to start unpeeling the egg, hemming and hawing, not able to get the shell off, so I said sometimes the shell comes off easier if you put it under water. So he tried that, and got the shell off and handed me a bite: it was a gelatinous mess. I must remind you that I am in a Jewish convalescent home: they had made a soft boiled egg and not told us. So, here we had a soft boiled egg going all over the place and my poor husband didn't even know what a soft boiled egg was!

After that, I took my first bath at the KGH, which was a pleasant experience; I felt so much better afterwards. The bath itself was pretty uneventful. After that, I had physical therapy. I worked with a new therapist who had some good pointers for me on balance and getting more control of different parts of my body. Both the therapist and session were really good; I really learn different things from each different therapist; they are all excellent in different ways. I went walking with her a long way: 55 feet! We walked to the gym and did the parallel bars: walking and calf raises without a walker. Then I did lunch-soup, chicken with olives and tomato sauce and lots of orzo salad. Then I napped for about an hour and a half. I was having apple slices when they came in for occupational therapy. I felt that I did well in OT: still working as much as I can to strengthen and keep my flexibility.

You know, I'm still receiving so many good wishes and cranes and just everything. You guys have been so supportive and it's really nice to hear from you. I've received so many beautiful messages from all of you and just appreciate it so much.