Wednesday, October 15, 2008

Things are Looking Up!

Here’s the best news I’ve had in a while – after seeing my depressing previous blog post, two friends in California wanted to help so they have arranged a temporary nanny for a week and a half after next week’s final chemo session. They’ve just sent me Meaghan’s bio and she looks terrific. Hurrah! I’m very excited to be able to get daytime rest again! Thanks Sarah and Gwen!

The hot air balloon trip Colin and I took last week was fantastic. The weather and foliage was absolutely beautiful. We flew at sunset, 8 people squeezed into a wicker basket with very little wiggle room. We didn’t go as high as I expected – after a brief ascent to about 500 feet, we spent most of the time about 100 feet off the ground, and brushed tree tops several times. We brought Ethan back some leaves from the top of a tree, and he was thrilled. After flying for about an hour, we landed in someone’s backyard in the suburbs, and became the hit of the neighborhood children as we packed up. A few photos are posted, as well as (due to your requests, dear readers) a close up shot of my wig, and some recent ones of the kids, thanks to my parents who were here last week.

Strangely, I am actually looking forward to Chemo #12 on Monday. Because then I will be DONE FOREVER! Yeah! Even though I’ll be feeling crappy, it will be so nice to be on the other side of this huge milestone, knowing I’ll be getting better and better – at least until radiation.

Speaking of radiation. A few days after my first visit with the radiation oncologist, I went back to the department to get set up on the machine. They tattooed 5 blue dots onto me which they will use to position me in exactly the same place each time I go, and took a CT scan which the doctor and the physics department (!) will use to calculate exactly where they want the radiation beams to go. While I was there, the doctor unexpectedly asked to see me. She told me she’d talked to my medical oncologist and surgeon, and they were all concerned about me. This is not what I want my doctor to say. She said she was considering radiating a larger part of my chest than would normally be done, due to Chucky’s original size and fast growth and not reacting fully to my early stage chemo. Basically even though they don’t think it spread because my armpit lymph node was negative early on, there is also lymph that goes up (toward the throat) that she wants to radiate, just in case. This is controversial, as it goes beyond the standard of care and increases the risk of future arm swelling and some other yucky stuff, and my other two doctors had differing opinions on if it was necessary. She just presented my case at a tumor review board in order to have lots of doctors discuss me and try to get a consensus on what my treatment plan should be, though I haven’t heard back from her yet on how it went. So let’s recap here – I had extra chemo, extra surgery, and now am looking at extra radiation. I would really much prefer going to the doctor’s office and hearing “we know just what you have, exactly how to treat it, and we’re going to take care of it completely.” I’m a little tired of being special.

Friday, October 3, 2008


On my birthday yesterday, I received a number of messages from people wishing me well and wondering how the heck I am. I’ve been meaning post on my blog for a while now, so your messages are the motivation I need to get me to sit down and write. The short answer is that things are pretty miserable. I’ve now completed my 10th round of chemo, and continue to be extremely fatigued all the time. Other side effects that come and go are prolonged bruising and bleeding, including frequent nose bleeds; neuropathy in my feet; hair loss (I still have stubble that is falling out, and other body hair is going too); sore throat; runny nose and coughing; sensitivity in the intestinal tract; and lots and lots of irritability.

I’d like to thank my latest helpers – Sarah Brydon visited for Chemo #8 and my brother Bob Rhode visited for Chemo #10. I really appreciated having both of you here. Thanks also to my local friends for their periodic assistance, in particular to my great neighbors, Karen, Michael, Olivia, and Max for lending many hands in the evenings when Colin travels. And thanks Colin for keeping up your patience and doing so much with the kids when I need to rest.

My biggest problem right now is childcare. Many of you know that we hired an au pair, Nadja, to stay with us for a year, to help with the kids. Because an au pair works 45 hours a week, I had reduced all the kids’ daycare / preschool / after school care schedules so they would be home with her much more. What you may not know is that 3 days after she arrived, she decided she couldn’t stay with us because she couldn’t sleep in our house. It turns out she’s afraid of heights, and her bedroom was on our 3rd floor, up 2 flights of winding stairs, which gave her vertigo. She was only getting one or two hours of sleep a night. Otherwise, she was great with the kids and we liked her. She was with us Aug. 29 – Sept. 26, and has now resettled with a new host family in San Francisco and reports that she is sleeping fine now. Unfortunately the au pair agency was not as quick to find us a new au pair. They spent 3 weeks offering us other au pairs who were already in the country but wanting to leave their current host families for various reasons, but these reasons often meant the au pairs were duds – bad drivers, not engaging with the kids, can’t handle the work, etc. Finally we were offered a brand new au pair, Tina, who is still in Germany. We like her and have decided to take her, however she won’t arrive until October 31. This leaves me with 5 weeks of almost full-time childcare to do on my own (except next week, when my parents are visiting for Chemo #11), during the hardest part of my treatment. Because chemo gets worse over time, I can expect to be the most tired during the month of October. But I won’t be able to rest because I will have little Martha home every afternoon, Sarah all day twice a week, Ethan after school, swim lessons for the kids, and I’ll be running around picking up and dropping kids off at varying times. Plus the Newton Public Schools annoyingly close for the Jewish holidays and Columbus Day, meaning there are 3 school vacation days in a 3 week period, but Colin doesn’t have any of these days off. Add to all this my previously mentioned extreme irritability – I find myself getting irrationally angry at the kids and yelling at them way beyond the level of their “crime,” and I feel bad afterwards, but I can’t help it. It’s all completely horrible. If anybody still wants to come help out in any way, your assistance will be gladly accepted…

Let’s see, in other news, today I have my first visit with the Radiation Oncologist. This is the doctor who will oversee my six-week long radiation treatment, the next and final phase of treatment. Previously I had assumed that radiation would begin two weeks after my last chemo, since chemo has been happening every 2 weeks, and from this assumption I calculated that I would finish everything the week before Christmas. Well, I was wrong. Usually they wait a month between the two phases, so I’ll be in treatment straight through the holiday season (every week day except the holidays themselves) and won’t finish until some time in January.

As for how my birthday was, let me say I’ve had better. Even though I’m 37, with the cancer I’m feeling old before my time. 40 is looking closer and closer. Colin was on a business trip so I was solo with the kids in the morning, had Sarah home all day and Martha home for half the day. Ethan and Martha both made me birthday cards, which was cute. I received delivery of flowers which are brightening up my dining room (thanks to both Jess and Anne). My neighbors helped me in the evening, which was really great because at the last minute I decided to take Ethan to join the Cub Scouts and their first meeting was last night. When we got home from that, Karen had already put the girls in bed, loaded the dishwasher, and cleaned up the kids’ toys. I think that was the best part of the day! Now Colin is home so we will celebrate next week. We have planned a flight on a hot air balloon in western MA so keep your fingers crossed for a clear day and beautiful foliage.