Monthly Archives: September 2009

Sick Boy.

Short post tonight. Paco has a fever and seems to have something going around. Steve and I are wondering if that is why we are so tired.

I did have my first MRI post radiation today. It was my first outpatient one! First impressions are all good, the swelling seems to have gone down. I will get the full report next week at UCSF. This MRI is part of the trial, but Kaiser covered it with no problem.

It was a bit funny as I fell asleep during the MRI, then moved in my sleep, ruining a photo or two (my late father did the same thing 20 years ago). The nice technician got the dye injection on the first try.

Must sleep. Long night ahead and dentist in the morning.

-Erin

Nothing Urgent. A Simple Day. A Breakthrough With Paco.

I went out in the morning (I met with a Kaiser Social Worker, whom I like. She is practical and strong). Steve worked and juggled a Tommy screaming happily from the circuit exercise provided by cousin hand-me-down (thank you Alan and Lisa) and borrowed materials (thank you Amanda). When I got home, Lemon only slept for a short time. He is starving these days. He used to stop around 7 oz. He seems to take 9 to 11 oz at non-solid meals. So when he woke up, my power nap was ended. But this was the snuggly, giving a bottle in bed experience. (I miss nursing, but you can still snuggle):

Lying Next to Mamá, Milk Around Nose.

Lying Next to Mamá, Milk Around Mouth.

Steve headed out to the Spine/Back Clinic at Kaiser and I actually had to be ready to collect Paco at school for the first time! Strange. A stay-at-home mom had only been to the classroom once. I had kind of avoided it, wanting to not draw attention that Paco does not like. Steve was able to make it, but just in case, I took Lemon for a walk around the neighborhood. I ended up at the back entrance at the same time as Steve, on the tag-a-long bike, on a conference call. Ah Davis.

Paco came out of his room, and was shocked and overjoyed. He said, “you’re both here?” Then he checked for his bike and introduced his little brother to his teacher.

The Team

The Team

Tommy slept part of the time in the stroller…then passed out cold while Steve took Paco to soccer practice.

The breakthrough with Paco was actually with my broken heart as well. It is easy to look at decisions and life with practicality. But that does not mean that the decisions do not do damage to one’s heart. The obvious decision is that we are done with future children. We were so lucky Tommy arrived before the tumor was discovered, and we are rich with love. My dream was always more (I mean, I am the third child, had to allow for me). I know the dream is now gone and I have to give it up in my heart. But I still get sad now and then. Minor compared to the big picture (cannot risk 12 plus months of no meds). I have burdened two particularly giving friends about it, friends that have had miscarriages and loss. They have lifted me up a great deal.

This morning, Paco and I were talking about what a great big brother he is. He said, “It makes me sad we won’t have any more babies. I like babies” I said, “me too, it was a tough choice. I had to choose to take the medicine to stop the tumor from coming back.” And he said, “because you cannot take it when you are pregnant, it would hurt the baby?” I said, “Yes, and I decided it was most important to take care of my 2 boys.” And then he agreed, kissed his brother’s head, and started to do karate-style kicks and yelled, “Fight the Tumor!”

Shazam.

Apple Hill. A Baby. A Nap.

Still in a fog. No reason. Just life with a beeb.

So I think in general, people with friends and nice moms are very lucky. Sunday, we went up with Shannon, Chris, Kellyn and Mateo to Apple Hill. Poor Chris, had never been on the annual agenda (Shan and I merged our agendas two years ago, I think). First, the Rainbow (the best cider and donuts), then to O’Hallorans, as they have the best apple selection, then mom’s friends apple farm (the Goyettes) where you can pick your own, finally, Abel’s for the hot dogs and the pie selection (I prefer the pie at Kids Inc, but too much work to get through the lot).

Going to mom’s friend’s farm is lovely. The kids go pick apples and pumpkins. This time I stuck around mom’s friend Barbara, in order to show off my head (shaved, though not smooth) and catch up in general. Barbara is a 10 plus year breast cancer survivor and is one of those women who just has a vibe of joy and peace.

Last night, Steve was again superb. I shaved the front, he did the back. It was smooth for 12 hours, now the hairline (don’t like the Krugan) is creeping back. Paco said something to the effect of “How will you stop the other hair from growing?” I guess hats.

I prefer to think of my head as Eric Bana (he had a tattoo up the back of the head). Much more handsome:

Ah, Star Trek.

He is handsome...

He is handsome...

Today, my mom arrived at 10:30 so I could do some pick up before the cleaners arrived. Then we went to make some copies of notes and other cancer documentation. Coincidentally, the restaurant I had been craving was kitty corner. Bistro 33. In one week, I will again have to say goodbye to cheesy, high fat and calorie food. As I will be back on the magic prevention drug cocktail. So I ate the Puget Sound…http://www.33rdstreetbistro.com/menuDinner.html. I am also going to try to hit “Paco’s” an excellent Mexican restaurant in Woodland.

After running a few errands (while the house was being cleaned by someone else) we came back. Grandma Barb had fed Lemon 11 oz (Piggy) earlier, so I gave him a bit more after we returned. After we I put Tommy down for a nap. Then mom told me to go take a nap. I did, with the intention of waking up and going for a walk with the baby this afternoon. Next thing I knew, 90 minutes had passed. My mom had left and I could hear Lemon squawking from the exer-saucer (the best hand-me-down from cousins!). I was half-asleep and there was Steve, making dinner in the kitchen. It took about 20 minutes of holding a sqwuaky, kissy (a messy kisser) Lemon before I came to consciousness. Paco and Lemon ate a ton (Paco, pulled pork from Costco and 4 zucchini, Lemon a bowl of baby cereal, ½ jar of turkey and ½ container of carrots).  Their full bellies were ready for bath.  The following story may be my imagination: So after I cleaned up Tom post poop, we always stand him up on the changing table naked. He seems to know what that means and dances for joy at the idea of a bath with Paco. Paco came into Tom’s room wearing his underwear to see the face that went with the squeals. Tom looked at Paco’s face with joy, then looked down and seemed disappointed. Paco and I were confused. I asked Paco to finish getting undressed for the bath. Paco and I are both sure that Tom was looking for the matching body part (in this family: pito…this is a Spanish version of “willy.” It means whistle too. Also, I just learned in Chilean Spanish it means a joint.)

Today I am extra grateful for my mom. She fed Lemon a ton, took me to lunch, folded a ton of laundry, put it away, played Wii golf with Paco for who knows how long and told me to nap. I did not need the nap so much because of the cancer, no no. It is just the life of small kids. Lemon was up at 6.

A few photos of Apple Hill to follow. Yes, yes, need a photo of the wig. Sigh, not wearing it still!

Must sleep.

Apples of Our Eyes

Apples of Our Eyes

Kiss the head that eats feet.

Kiss the head that eats feet.

Agreement to Share Fresh Pressed Cider

Agreement to Share Fresh Pressed Cider

A Day's Adventure, Coming to the End

A Day's Adventure, Coming to the End

The hair isn’t… that… bad…

Steve here:

The last 24 hours has brought a sudden change to Erin’s hair. As she mentioned in previous posts, it began to thin quickly and as of this morning was falling out in volume and most of her head was now totally bare. For all you Sci Fi fans, it reminded me of the Kurgan from the Highlander movie… totally bare and shiny but with a spot of hair on the top center and a larger patch on the back. You could essentially make out the pattern where the radiation was administered.

Anyway, we went to visit Erin’s friend Shannon and her family today. The following picture captures Shannon the moment Erin first removed her hat.

Uncensored reaction to seeing Erin's head

Uncensored reaction to seeing Erin's head

The plan then became to shave the remaining hair off, as it really was looking crazy. Here are some shots of the trimming process. Erin’s good humor about the changes continues to lighten the mood.

After the shock, the inspection

After the shock, the inspection


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Putting our shiny heads together.

Putting our shiny heads together.

We left the "soul patch" for last.

We left the soul patch for last.

It’s Not Gray, Honey, It’s Bald.

I have started to wear bandanas, the cotton scarves that Colleen made, and even t-shirts tied around my head. The shedding has hit some kind of quick stride. I am hoping a friend can shave tonight. Fortunately, the weather will drop about 20 degrees so the wig may me sported (or scarves or the best hats).

I thought that gray hair was coming in and was getting along my front hair line. I went to Steve and said, “is this gray coming in?” Steve’s response, “no, no, it’s just your scalp.”

I slept with a t-wrapped around my head last night. Wanted something to catch the hair!

It is good if this makes you laugh. Enjoy. It makes me giggle. I am ok with hair, fake acne is another story!

Shedding all around the top of the head. A Crown?

Shedding all around the top of the head. A Crown?

More Hair (In the Sink).

It never stops shedding. The sides and top are going every minute. There is hair everywhere. This is the sink today, when I rubbed it out of curiosity.

The back is holding. The widow’s peak is turning into a soul patch.

Throwing in a photo of the hair in the sink (as it is every time I use the bathroom) and another photo of the beeb.

One More Photo

I love this one…

Steve and Paco in temp tandem

Steve and Paco in temp tandem

Davis in the Morning

I have not quite mastered Steve’s fancy camera (tried to take photos, Steve pointed out lens cap issue).

What you cannot see are the 20 bikes that went back and forth on our street in the 10 minutes. And those are just school kids and their parents. I did not include the college students!

Two Gifts. 24 Sept 2009

A breakthrough…a real 40-minutes walk this morning, pushing Lemon in the stroller. (He has started to answer to Lemon, we should call him Tommy more often, but it is hard to alter at this point). Not my best photos, but still evidence. No photos of the wig yet. I have not actually worn it for more than a few minutes.

I remember when my dad died, almost 14 years ago, the show ER was on that night and a father died. Brandon, who had just had a good friend killed in a hold up months before, held me while I cried. Then when Shannon’s daughter Elyse died, I could not watch any drama with a child death, for a couple of years. I also cried while pregnant, but that is no surprise.  Tonight, while watching Grey’s Anatomy’s season premiere, Steve said, “maybe we should just stop watching this.” To be clear, Izzie Stevens has melanoma that has metastasized to her brain. I have had a Grade 4 brain tumor, which will not go anywhere else, just in the brain. Not the same thing, for the record. I more resented Izzie’s clear skin (so she is not on Tarceva???) and all the scarves (too hot here for scarves). Still, I was crying, though that is not unique for me with any drama show. But tonight, as it got all…schmaltzy, Paco woke up. I had to turn it off as I heard him come down the hallway. He climbed up into the sofa and snuggled me. He usually prefers Steve. My pokey hair, before that, I was nursing Lemon, before that, I was pregnant and he could accidentally kick me. And as I held Paco, quietly crying, just explaining I had watched something sad. I kept kissing his forehead. He put up with me stroking his hair with envy. Then I carried this giant 5 year old back to bed.

5 years ago, I was at my grandmother’s 100th birthday party. A longtime friend of my dad’s, from when he was a child was there. Ginny (not cousin, to clarify) had always treated my grandmother with a lot of respect. At that party, she took the chubby, happy Paco (about 4 mos. at the time) and held him. She said to me (in her 60s, I think at the time,) “He is a gift.”

She said it firmly, as in “don’t complain.”

She is right.

It is so easy to get frustrated and I know there is a lifetime of fear and management of side effects ahead. Drs. appointments and scans and prescriptions and blood tests…but then we have two boys. I cannot even start on the 3rd gift, their dad, master of bike rodeo.

I know it could get worse from here. In 2 weeks, I am back on meds, likely puking due to the 2.5 X increase in temodar. In 3 weeks, I will have dry skin, and fake acne and be running to the bathroom. In 3 weeks, I still have these boys. Paco is determined to be Darth Vader for Halloween, and Lemon is a wet, drooly child who will not sleep with anything else going on (too social). They are full of love for each other.

They are gifts.

Bike Rodeo

As some of you may know, Davis is regarded as the best biking city in the U.S.  There are over 200 miles of paved bike trails throughout the town of 60k residents.  It’s a real hoot to see traffic jams of kids and parents on bicycles going to and from school each day.

Paco had resisted learning to ride without training wheels this past summer but we have been riding to school together on a trail-a-bike.  This is a cool apparatus that turns a standard bike into a tandem with the child riding on a smaller bike behind the parent… basically a trailer that can be ridden like a real bike.  He can coast along if he’s tired, but Paco prefers to pedal.  In fact, he once had me coast the whole way to school so he could do all the work.

Our rides each day have been a very pleasant experience.  We’re only about six blocks away from his school and most of the way is along quiet tree-lined side streets.

This afternoon his school put on an event in conjunction with the Davis Bike Cooperative and the city police called the Bike Rodeo.  The children had their helmets and bikes checked to ensure that they were safe and fit properly.  Bikes were then ridden on a short skills course including starting, stopping, hand signals, and a slalom course.  We completed this section together on the tandem much to the amusement of the policeman monitoring the course.  Paco then passed (100%!) a quiz about bicycle safety.  I guess he had been paying attention to my riding because he knew the hand signals for left, right, and stop even though I never explained them to him in great detail.  He also knew which hand brake controlled front and rear brakes (his section of the tandem bike doesn’t have brakes and his small bike has a coaster, so I’m not entirely sure how he picked this up other than by watching me).  He’s a genius when it comes to vehicular propulsion… what can I say…

He seemed to have had a great time and insisted on riding the skills course together a second time and then riding around the park adjacent to the school before heading home.  He then suggested that he was ready to try riding without training wheels on his bike (a hand-me-down from his cousin Kyle) so that he can get a bigger bike for his Birthday next winter.  Then he reconsidered and suggested that we ask Los Tres Reyes Magos for the bike.  In Latin American culture, the three wise men bring gifts on Epiphany, January 6, and the holiday was celebrated at his school in San Jose).  He reasoned that if they bring it the bike would be free.

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