Monthly Archives: November 2009

Oh Happy Day. MRI Clean.

MRI…clean!

8:10 AM, hit the road with Lemon in car.

8:45 AM, Shannon meets me at car. I hold Lemon while Shan carries Tom’s stuff. Needed bonus love.

9:00 AM, BP high. Shocker.

9:10 AM Dr. Chen walks in. He is happy with the clean MRI! Concerned about low platelet (lower than leuk-friend at the moment!). Warns me what could come for treatment (bag o platelet, etc). Says that if I go off the trial, MRIs would be 3-4 months, then at 2 years, 6 months apart. I like the 2 months MRIs. I am spoiled. He asked if I would do it everyday. I said, no, the new machine is really loud.

9:30 AM Re-pile back in car. Get to gas station to refill car. Tom is sad. Very whiny. Shan follows us to Radiology Imaging office of Kaiser (on Arden, across from St. Ignatius). I give Tom a bottle while Shan looks for a bathroom (there are about 10 Kaiser doors, it is the background work, not clinical). After failing, she returns to the car and takes over bottle. I run into imaging to sign release and get CD copies going of MRI from Sat. Ken, the nice guy who works there (June, who has also helped us, retired) says has a bathroom in the back for Shan. When I left the imaging office…there was Shannon in the parking lot, releasing Tom from the car seat to give him love. He was squawking. So she got to use Ken’s bathroom.

10:40 AM We threw Tom back into the car, left Shan’s car there and headed the mile to Kaiser Morse. Tom was falling asleep, so Shan just pushed me out of the car.

My appt was at 11:15, and I told Shan it would be 11:30 at the latest. Not being a Kaiser patient, she did not really believe me. So I get up to Oncology, get called in early, seen by Dr. Adams in minutes. Dr. Adams is a joy for me. He seems to just know what to say and how to say it. He said due to platelet count, the Temodar (the 5 days of yuck) would be pushed back a week. He thought UCSF would go forward with Avastin. I asked to retake the test, just in case, as I have learned from my Leukemia friend that they jump up and down. So I headed to the lab got the blood drawn done and then called Shannon about 11:20.

11:20 AM Shan was apologetic. She said she had not believed me and was on the freeway driving around Tom so he slept.

11:35 AM Shan came up and collected me. We (after forgetting and having to turn around) headed back to get her car from the other Kaiser lot. Then, Shan took off to get lunch (beloved Panera) and I was in the car with Tom when UCSF called me to see if I could get my platelets checked again (done!) and also could not do Avastin until it climbs above 50K.

Midday:  Shan meets me at Barbara’s with lunch in hand! Barbara’s house was freezing (ok 51) due to Barbara being on the beach in San Diego (in a large ballroom, playing bridge). I was so sleepy, I cranked up the heat and put Tom and I in a sunbeam and barely stayed awake. Shannon ate first, as I was huddled on floor in coat and blanket. I am always freezing these days (at this moment, the house is 70 degrees, I am in sweats and sweater, fleece and a hat, under the covers). Once the temperature got warmed, I ate the great sandwich that Shan picked up and we tried to feed Tom, who was too cranky due to teeth coming in. From there, we put Tom in the pack and play and relaxed for about 20 min. Then, when Tom woke up and would not stop crying, Shan took him and told me to sleep.  I did. I was out cold on my mom’s sofa for about 80 minutes. Shan played with Tom in the sunbeam. Glorious.

3:00 PM We packed up and Shan returned home, where her mother had watched Shan’s kids all day. I talked to UCSF and I had to go back to the lab for more testing. Ugh.

3:45 PM Reached home and dropped off Tom, picked up the lab slip sent by UCSF and headed to Davis Kaiser. Did my thing, (Anne, the phlebotomist, always lifts me up). Headed to the store and came home.

5:00 PM Lemon was fussing, so Steve and I traded chores at his choice. He opted to make dinner. I had picked up ribs from Safeway and I ate the 2nd half of my tuna Panera sandwich. Paco ate everything in front of him. A total of 2 whole bell peppers today! I had given Tom Motrin for the teeth and the child ate well.

6:00 PM Steve and Paco enjoy two pomegranates.

6:30 PM Bath

7:00 PM I do dishes. Steve returns to work. After dishes, I talk to Aunt Pat about tomorrow’s agenda.

9:04 PM. I am lucky. MRI. Access to experts.

At the moment, my body cannot handle chemo…perhaps tomorrow it can.  Tomorrow we go to UCSF for the monthly consult. I take the discs and show off my clean brain. Dr. Adams was great as he explained that we just keep trying to poison the cancer cells until they give up. He always helps me appreciate what chemo is. This is opportunity that I am fortunate to receive.

Love, A lucky girl.

P.S. Babs usually edits. She is playing bridge. Maybe she’ll edit it Thursday.

All Is Well, More News Tomorrow…

I am doing well, despite weird platlet numbers and needing a bit of extra sleep. Tomorrow, I see my radio-oncologist and my regular oncologist…so I’ll have more news to share.

Life is good. Lemon is louuuud. He looks like a baby penguin, trying to pull on people and a very straight-haired fuzzy head.

Hope your Thanksgiving was great. Today is the beginning of Advent, so I am focused on the joy (loud joy) in the house.

Thanksgiving.

My list of what to be thankful for could take up more bandwith than any of us have. I have much for which to be grateful. Today I got to see my big brother, his cute wife and son and my best friend with her mother…who, with Shan’s husband, keep stepping in so Shan can help me with the kids here.  I talked to my mom and exchanged text with the big sister. I heard warm emails from cousins and actually had a normal, glorious day.

Paco, the first half of the day, was someone else’s child. He peeled potatoes with me, then folded laundry with Steve. I was a bit confused. Then we ruined it between lack of food that he loved and he was so tired. But forgiveness was filling the house at Shannon’s!

My potatoes were short on cream, but none of us seemed to care. Tommy got to be with Shan’s mom and meet a new number one fan. I have actually not napped today.

Weird. A happy, productive day. Filled with love.  When I forced Paco to be the first to say what he was thankful for…he said, “my mom.”

I cannot complain.

Happy Pre-Thanksgiving

Tomorrow will be a good day. See Beck around Noon, then on to Shan’s where we get to be casual as our children play. Babs and Clark are on an early flight to Bridge world. Brandon is getting up early to take them to the airport.

I had another crazy day where I did not leave the house due to the proximity to the bathroom. But Tom was great and Steve ran the errands that I had hoped to do. I looove UCSF. The on-call nurse who was finishing up the schedule for next week called me. I relayed my crisis to her. No Tarceva until Tuesday! I am overjoyed! I think the intestine bug could be a bad reaction to hot chocolate, or just a bug going around. But any chance to take a break from the pizza face maker, I will take. The rash won’t clean up, but it will still have a fantastic placebo effect. Kaiser already called in the higher level anti-diarrhea med, but Davis was out, so if all is urgent, I can pick it up in Sac tomorrow. (More info than anyone needs).

OK, off to sleep. I have potatoes to mash and I want to be rested.

Happy Thanksgiving. Erin

Steve Needs a Vacation

Poor thing. I spent most of the day in the bathroom today. Steve was out from 9 to about 2. But then, I warned him, he was on full duty all afternoon. He is working now, restarting work up at 8:15PM.

I have no idea what sent me to the bathroom all day. I barely made it the 6 blocks to Paco’s school. And here I have been so good about eating bananas! I don’t even like them.

I look at my husband, and what he is juggling and I am just amazed. He is just balancing it all. Lately, I have been really trying to give him more time but then something like today happens. And my mom was ready to come out, but she is sick, and it is two days before Thanksgiving. I did not even call in all the people that are lined up to help. Tomorrow, I better feel better! And I will get the little one and get out of his offices.

After a tough night with Paco, Steve came in to sit on the bed. And we looked at each other. And he said, “What would I ever do without you?” We are never going to find out. No matter what, I have faith that this tumor will not come back. I am meant to lead research, I meant to appreciate my family, I am meant to make a difference somehow. Perhaps not today. Today, I am wearing a trail in the carpet to the bathroom.

I think crisis dictates well where a marriage is. I am more in love with him than ever. 12 years. I have dragged him to the Vatican, to Catholic Sacraments, to fertility treatments, to name it. He had opened my eyes to Spanish, Argentina, and of course, cars. And in 12 years, we will celebrate our 20th anniversary, and walk in Venice. In the meantime, I need to kick these side effects!

A few more photos from Sunday. Side effects or not. My life…is filled with love. And luck.

 

On Behalf of Moms Across the World…

We need a nap.

Babs was exhausted today from fighting her cold. Did not stop her from baking a cake though. I went to her house to give Steve some space. Ha! We were all so tired (me from wearing fancy shoes yesterday) that it was a non-event. There was whist and King’s Corners involved, photos from yesterday (“don’t they look adorable?!” We said of B&L in every shot)

But we are all tired. All moms have a list of things to do. Sure, I can blame the side effects from the chemo. But today, I’ll blame my kids. Soooooo need to go to sleep early.

Cute moment: I had forgotten Wheeler’s math book in my car yesterday. So he and Michael dropped by to collect it from mom’s house. Tom made the leap for Wheeler’s dad. Like “oooo, you look like Wheeler. But you are taller.” Tom repeatedly made the leap from 6’3″ to 5’3″. Then back up. Then he napped. And we played whist and I printed photos. A weirdly productive day. With no nap.

Oh, think I discovered the main problem with food…bubbly water and soda in general. Since I gave them up…life is better. Salads still bad. But I ate pasta tonight, with meatballs. All is good.

On the food note…sort of. Paco and I hit Carl’s Jr on the way into Sac. I like the Santa Fe Chicken. Anyway, I got the Santa Fe Chicken for mom to try, and Fish Girl ate it! Clark was happy. Paco, as we pulled in, asked how long ago my dad had died. I said almost 15 years (14). He said, and how long has your mom had Clark. I said, almost 3 years. Paco said, “mom, you are really lucky that you have Clark to be your dad now.”

An observant kid. He is 100% right.

One more hour, then to sleep. And life…is good.

Nephews and Godchildren

Beckett. What a cutie. Lisa thought he was screaming. Nope, just complaining a bit. But compared to the other 11 babies (and The Squawker) Beck was just a star. Here is a fan photo from his godmother!

Awaiting Baptism

The baptism was…a bit chaotic. The wonderful priest who is from India and the great deacon on duty did their best. There must have been a change in schedule, because it was 12 families rotating through and the reading changed. The acoustics at St. Mary’s made for difficult understanding of people (particularly a priest from India with an accent). But one could see from his energy that he is full of life.

I did not get to hold Beck as much as I wanted to, I did not dare risk his crying. And he was…adorable. Brandon and Lisa just seemed…happy. They took turns holding the  Gift. It is as though despite the long nights and all other challenges, not a minute of anything but joy passed between them.

Cute Kid, Parents and Godparents

Serendipity also gave me a gift (Brandy can go off on his cute wife and cute son later). Leaving the 11AM mass, there was my dad’s friend from childhood, Ginny White Johnson (as I arrived for the 12:30 baptism). I have not written her but there is not a day that goes by that I don’t remember her words. She never read the blog, I suppose (I wrote about her ages ago). These boys, even when they misbehave…are gifts. Yes, for sure.

Wheels took care of Paco after an altercation with other kids his age. They snuggled and watched Arthur. Cousins are glorious.

Went Through 4 Boxes!

Today was a pedestrian day. Glorious in a way. Steve and I were both longing for time to putter at our desks. And the kids were relatively good and independently playing. Tommy in the pack n play. As long as music is going, he seems fine. Paco is on a lego mission. I think rather than make his 4th grade (is that when it is?) California mission history project from sugar cubes, it will be of lego.

But 4 boxes I cleared out, after waiting since April. I have more to go, but stuff was shredded, filed or recycled. Small accomplishments. Not food, bathroom, meds or diaper related.

Tommy is work, yes, but his face cracks me up. He made a total Barbara face yesterday when Steve tried to get him peas. Then last night and today, he stole the banana out of my hand.

I want to post the rest of these photos. Not the best, but TomZ reflected how I felt about them. I love watching Babs and Paco together. I hope she does not pull him out of school so he might Life Master by age 12. But, this, is just special. One of the best reasons we should be happy we moved closer to home. My mom does not want me raving about her as much as I want to do. So I hold back. But I was looking at these again and at least one day a week, this is usually the vision.

Tomorrow will be a good day. I get to see the Beck, and we get to celebrate the beginning. A day not about praying that I will survive, no. A day about saying thank you that someone arrived. And I get to be the godmother. How cool is that.

A Blur.

I should post all about side effects in the side effects section, but let us just say me and dairy. Bad.  I love cereal and milk. We must break up. Provolone on a sandwich. No longer.

Yesterday we actually had a sitter! (Katie, who we love, but she is a senior and going to DC for midterm. Her career with us is short but cool). I was ready to bail, but Steve gently nudged to go out despite being up with Paco the night before.

Wednesday night, for dessert, Paco ate too many berries. We let it go, we warned him it would make him ill, but he proceeded with 1 pint of blueberries and 1 pint of blackberries. By midnight, he made it to the bathroom, puking, on his own. We were impressed. By morning, he had thrown up a majority of berries. And he was strong. Made it to the bowl or the porcelain bowl every time. I thought for sure it was something I had eaten too, but no, it was just a fruitful indulgence.

So Thursday, we met our beloved friends Carolina and Germán Scipioni. They live in San José and Walnut Creek was an ideal halfway. I was probably driving them crazy, but it was a lovely night and a remberance of how life used to be and how it will be again. (Nancy, good call on Primavera!).

Today, I was actually up and active (though in the house) most of the day. It was too cold for me, I admit. I love cold, but with no hair I was wearing a cap all day. I have not been able to walk much, mostly due to proximity to a bathroom. But that is just something I need to figure out.

There is much I need to express, but tonight, I just want to say thanks for all the hearts and prayers. I don’t know where this community came from, but not a minute goes by that I am not grateful.

I remembered the news of the day. In Cork, Ireland, the flooding (as in much of England) is massive. And I decided to call whatever cousin I could get. I got Mary, who is my age. And we picked up our conversation as though it had been 2 weeks since we talked, not over 2 years. Cork is in for a challenging week, the hospital is shut to non-emergencies and they are shuttling employees in by boat. Today, my heart is with my poetic homeland. It always is. I even asked the priest I know who is going there next week to touch the ground. He is from Wicklow, not Cork, but full of life none-the-less.

To sleep early. I actually want to make Steve a cappuccino tomorrow morning for the 3rd day in a row. It is the small victories. Love, Erin

PS: A few photos to mark the good life:

This is mom and Paco discussing bridge. They have to re-teach me. We shall start with Whist, I think.

Love and Hope and Faith and Dreams (and some Beck)

Erin’s brother, Brandon, here…

Apologies for the delay. Funny how it is tough to free up 15 minutes to post to a blog. I used to poke fun at those people who say, “I just do not have time to do whatever…”. Now that is I (or me? I think it is I. Feel free to correct).

Anyway, Lisa and I met Lisa’s cousin, Brett, at St. Mary’s (where Lisa went to elementary school and where we got married) last night to go over the final details of Beck’s baptism with Deacon George and about 11 other couples. Lisa’s folks, Chuck and Joleen, babysat Beck. Brett is the Godfather to Beck and Erin is the Godmother. We walked into the church a few minutes before seven and there was a cute gal that neither of us recognized frantically waving at us to sit next to her in the pew. Turns out it was Erin with a wig. Too funny. Erin lasted through the 45 minutes of the Godparent training and then took it off due to itching. She looked great with and without hair. I always forget she is sick while we are hanging out. Not sure if that is my optimism or her spirit. To use a West Wingism (just made that up)… Erin seems to be asking everyone, “What’s next?”

We headed back to our house and relieved Chuck and Joleen of their Beck duties. Erin and Beck compared relatively bald heads and bonded as good Godchild-Godmothers are apt to do. I took a bunch of pictures but have to download them from the camera, which I have not done yet. Instead, here are few from today that I took with my phone.

Just a FYI….Edub, Beck’s baptism name is Saint William of Rochester. He is the patron saint of adopted children.

Beck is doing great. Despite being tired most of the time, Lisa and I are still over the moon about him. He had his first round of immunizations last week. Cousin Mary (#2) gave a worried father some peace the day before with some kind advice. Good to have cousins in high places. I was telling Erin last night that I hope to live a long life (of course) to spend with Beck and Lisa. That said, even if I live to 80 it feels like it is not enough time. I imagine that is a good thing to feel about those you love.

Here are few pics….

Ciao, Brandy

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