August 5: I’m about to fall asleep, but I wanted to post the pictures I took during our weekend at Jack’s house. We all had a wonderful time. Mom felt pretty good, and there was lots of laughing and eating and being outdoors together. The weather on Saturday was rainy (for the first time in what feels like a month) and chilly, so we postponed the Wisconsin River float until Sunday. Instead, we drove around some of the beautiful areas surrounding Jack’s place, headed over to Iowa for a bit, and saw some beautiful views.
On Sunday, Michael, Matt, and Lisa had to head home early and so missed our float. Tremendous thunderstorms overnight kept Kyle awake, so he found a bed to catch up on sleep. But Terry, Jack, Tom, Josh (a friend of Michael’s), Joe, Becky, Bryan, Andrew, and I had a fun time on the river. We took a canoe so we could get home fast if Andrew stopped having a good time. And it was cold, cold, cold, but the wonderful thing was that Andrew was just sparkling with delight the whole time. He thought that being in the water was so neat, he did NOT want to ride in the canoe, and so he had fun in the river with the rest of us. We stopped for our watermelon demolition mid-way, there was some watermelon attacks, and despite the lack of sunshine and chilly water, everyone had a really fun time. Photos of the weekend are in the gallery.
Adorable Andrewisms
August 1: I’ve realized to my chagrin that this summer I haven’t done a very thorough job of documenting some of the wonderfully sweet and enduring things that my sweet son says and does. So here’s a stream-of-consciousness set of Andrewisms.
Last month, I started asking Andrew to tell me stories. To my great surprise, he really likes telling stories. Mostly just one, but he really gets into it. It goes like this.
Andrew: “Onceupontime there was…MONSTER.”
Adult: “A monster? Wow! What did the monster do?”
Andrew: “White monster. Big. Ate a table.”
That’s pretty much the story:)
We have two big cherry tomato pants in our back yard. All early summer, Andrew desperately wanted to pick the green tomatoes. It was a compulsion. It was as if he couldn’t help himself. Now that it’s the height of summer, he can pick as many ripe tomatoes as he wants. But sometimes he still grabs the green ones. He calls them “tomataoes.” “Go see tomataoes, Mommy!”
Another of Andrew’s favorite games is to hide under the covers in our bed while a ferocious bear (his dad) sniffs around him and roars. Then Dad shouts, “Shoo bear!” The bear runs away, and Andrew pops out of the covers. Sometimes Andrew considers the fact that a bear is now loose in the house, and he yells, “Mommy, bear coming!” I then yell, “Shoo bear, get out!” and let Andrew know that it ran far away and we’re all safe. He just loves this game. Daddy is a wonderful sport and plays it overandoverandover.
Favoritisms: Off and on for the last six months, Bryan has been the favored parent. When I’m alone with Andrew, we have a great time together, but if Daddy is home, there’s a constant struggle for Andrew to let me do things like play with him or change his diaper or pick him up. Bryan is a super-amazing dad, and he fulfills his requested duties well, but I’m sure he wouldn’t mind a change in the young master’s heart so he was a little less in the constant limelight!
Playing in the sprinkler: Andrew loves having me squirt him with the garden hose. For a little boy who so very much detests getting his face wet while having his hair washed, he loves getting sprinkled with the hose. He calls it “rainbow,” I think because I would try to show him the rainbow in the water and that was when he first realized how fun it was to run through the water. He’s such a cutie playing in the front yard as I try to water our dry, dry garden.
Speaking in sentences: Suddenly it seems, Andrew is moving from two-word phrases to much more complex sentences. The other morning, I brought his toy elephant into his room. He looked at the elephant and said, “Good morning, elephant. I am getting my diaper changed.” Bryan and I exchanged shocked glances. When did he learn how to talk like that!
He’s also started reciting books more. He’ll often repeat a couple lines, but last night while he was taking his bath, he pretty much recited Freight Train to himself. “Moving. Going through tunnels. Going by cities. Crossing tressles. Moving in darkness, moving in daylight. Going, going (whispered) gone.” It’s amazing to watch him learn and do new things.
We were reading a book this morning about 10 little fish, and he pointed and counted the 10 fish (sometimes counting to 11) several times. He’s been really into counting for a few months, but it’s not until more recently that he’s started pointing and counting the actual number instead of pointing at a group of objects and just saying numbers for a while. It’s so weird to think that someday he’ll be reading too!
Mom’s making progress?
August 1: I’ve been pretty wrapped up at work and with evening activities, so I’ve only talked to my mom on the phone the last few days. Not much to report, but I thought that folks might like an update none-the-less.
Mom said that the leaking catheter seems to have slowed somewhat. Yesterday (Tuesday), she went into the oncology clinic for a long time. She had an appointment with Dr. Frontiera, and he said that he had talked with Dr. Matzke about scheduling a biopsy of the suspected Sister Joseph’s Nodule. It was Dr. Frontiera‘s opinion, though, that the suspected nodule was just an old umbilical hernia. Differing opinions can be hopeful! I don’t think we have a date for the biopsy yet, but that’s in the works.
Mom was at the oncology clinic for about six hours, getting two bags of saline infused through IV. She’s been drinking loads of liquids, but so much of it is leaking out of her liver as ascites that her blood pressure is getting pretty low, and she’s feeling fuzzy and tired, and generally dehydrated. Mom’s brother Peter and his wife Marci came up from Iowa and visited Mom during her time at the clinic.
I talked to Mom briefly this morning, and she said that the leaking of catheter seemed to have maybe diminished, so that was hopeful. She was discouraged that after getting all that fluid yesterday that her blood pressure was still low (99), and she is still feeling really light-headed. Throughout the day today, she’s been feeling really wiped out.
We’re getting geared up for our annual trip out to Jack’s house this weekend. Mom’s thinking about the shopping list (we have 15 attendees this year!), and Joe and I are going to acquire the food.
That’s about all I have to report today.
~Althea
Mom’s health update for June and July 2007
July 29: I’ve been holding off on posting anything about my Mom’s health for the last month because, while she has been having health complications, it hasn’t been clear what was going on, and she didn’t want to get people worried while we were waiting to find out answers from her wide team of health experts. At this point, though, it is looking very likely that Mom’s cancer has returned.
Here’s the back story.
I haven’t posted about Mom’s health in many months because there hasn’t been much to say. Here’s a link to past posts I’ve done on Mom’s health. She was diagnosed with pancreatic cancer in May 2005. She then did chemo and chemoradiation throughout the summer with the hope of shrinking the tumor so it could be removed. We met with several surgeons in the fall of 2005 who said they could not operate, but when Mom met with Dr. Farnell at Mayo clinic in December, he said he could operate.
Mom had the major Whipple Procedure done on January 11, 2006 to remove the tumor, most of her pancreas, and sections of intestine and stomach. The surgery was very successful with the one blemish being that there was a positive margin on the Superior Mesenteric Vein. That means that some tumor cells were left in Mom’s body, and given the fierceness with which they regrow, it made her more susceptible for recurrence. We were told that follow-up chemotherapy would help prevent it from coming back.
Mom recovered well from the surgery. She underwent several weeks of follow-up chemo, and over the summer and fall of 2006, she took part in a clinical trial for an immunization to help a person’s immune system fight off pancreatic cancer recurrence.
By fall 2006, Mom was feeling mostly back to normal…more easily fatigued, but generally good. In April 2007, she started back up at work 30 hours/week at American Girl. Every few months she has had a CT scan has happily showed no sign of recurrence.
Summer 2007
In late June, Mom’s abdomen started filling up with fluid. By the end of June, she felt like she was eight months pregnant. She had a CT scan on June 28.
On June 29, we met with Dr. Frontiera, her oncologist. He said that she had a clot in the Portal Vein which drains the liver and spleen. The Portal Vein is is formed by the superior mesenteric vein and splenic vein. Looking at the CT scan, he said that he saw a thickening or fullness in the vein, and said that the cause of the clot may or may not be tumor. Having a clot in the Portal Vein puts stress on the liver and causes fluid, called ascites, to weep from the liver. This fluid is what was causing Mom’s abdomen to swell. Dr. Frontiera said that the main way of dealing with a clot in the Portal Vein is to put Mom on a blood thinner like Cumaden. Unfortunately, Mom has had two episodes of internal bleeding from taking very weak blood thinners, so putting her on a heavy-duty blood thinner carries with it some really serious risks. Dr. Frontiera drained Mom of almost eight liters of fluid (a big relief for her), and tested the fluid to see if it contained cancer cells.
On July 3, we met with Dr. Frontiera again. The results of the fluid (as well as repeat tests) showed suspicious cells, but did not confirm the presence of cancer. Frontiera said that we should regard this as a recurrence. He said that if she wanted to treat it, she could go on Gemzar weekly, but the problem is that response rates to Gemzar, the main pancreatic cancer chemo drug, are just depressingly low.
He said that in a best-case scenario, that the clot in the portal vein is being caused by scaring. He said that Mom come in to the clinic every few days to be drained, or she could have an external catheter so she could drain the fluid herself.
On July 11, we met with Dr. Matzke, Dean Care’s pancreatic surgeon. He said (all doctors do) that he was really impressed with how good Mom looks. I think in reading over her chart that they are expecting someone quite a bit sicker. Dr. Matzke said that he thought that the clot was the cancer coming back. He said that not finding confirmation of cancer in the drained fluid in not uncommon. My main thought at this time is, “Man, this guy is just really trying to burst my bubble of denial that this could be recurrence, isn’t he!” Matzke thought that Mom should be on some type of blood thinner to try to free up the portal vein so her liver could drain properly, and was worried about how her liver will do longer-term as it is not able to drain except though some little veins that have developed to compensate for the clot.
We asked lots of questions about surgical options, and again, this nice, young doctor kept bursting our bubble. He told us that no one would try to remove a tumor in this vein or to try to reconstruct the vein. Matzke had worked for our magic Dr. Farnell at Mayo, and we asked him to give us a referral to see him. Matzke helped make that referral possible.
Mid-July: After going in to the clinic to get drained every few days, Mom decided to have a permanent catheter installed so she could drain the astices herself. She has been draining one-to-two liters each day.
This was kind of a rough time. Mom was still working 30 hours per week, wasn’t feeling very good, and was trying really hard to visit and help her mom in Janesville, deal with the fluid issue, and make doctors appointments. Her sick and vacation time at American Girl were down to just a few days, and poor Mom was more discouraged by this whole situation than I have often seen her. To complicate the situation further, about a week after getting the catheter installed, it started leaking. Actually, I think a better description is probably gushing. Mom would be on her way to work, she’d stand up to get out of the car, and she would find herself soaked. Dr. Frontiera tried several times to tighten up the stitches around the drain. He suggested she try bed rest and drain frequently to help keep the pressure down and help it heal. To our great displeasure, though, several weeks later, it is still leaking, flowing, whatever, and it’s keeping mom housebound.
July 25 – Trip to Mayo: Mom, Dad, Maretta, Kyle, Maretta’s friend Josh, and myself all met in Rochester, Minnesota to meet with the oncologist, Dr. Quevedo and with the surgeon Dr. Farnell. Given the difficulty of making a diagnosis from the CT scans, and given how few people are in Mom’s situation, we wanted to talk with some of the world’s experts before we made any decisions about how to proceed.
Mom’s weight has dropped quite a bit the last couple weeks, and she was feeling pretty light headed, but again, the doctors were all impressed with how good she looks.
Dr. Quevedo was very compassionate and gave us a lot of his time. Unfortunately, his diagnosis was not what we wanted to hear. He said that it looks very much like the cancer is back. He did say that occasionally there is no cancer and that blood thinners can deal with a clot in the portal vein, but that it would be unprofessional of him to say that the cancer wasn’t back. Quevedo said that he didn’t know the right answer about using blood thinners. He said, “Do you cause harm by doing or not doing? We can’t know.” Quevedo talked about the pros and cons of going on a weekly infusion of Gemzar, and talked about the possibility of trying a Phase I clinical trial. Dr. Quevedo said that it’s Mom’s decision about which of these treatments she wants to try. When we pressed him about what he would do, he said that if it was his wife, he would suggest she do no treatments because he felt like the possible benefits of the treatments were outweighed by the side effects and the constant medical appointments. Again, nice doctors giving us information we didn’t want to be hearing.
Dr. Quevedo was impressed with how calmly Mom was receiving all this information, the questions she was asking, and the fact that we were joking and occasionally laughing throughout these dire conversations. That’s my mom!
Dr. Farnell didn’t have good information for us either. He felt pretty certain that the portal vein is blocked by tumor. Above that, he had carefully reviewed Mom’s CT scans and actually identified a few other places where he thinks he might be seeing tumor recurrence. One is called a Sister Joseph nodule, and it’s located outside of the abdominal cavity a little above her belly button. The other two spots he showed us are thickenings (a grey fuzzy area on the CT) around the Superior Mesenteric Vein (the good old SMV) and the Common Iliac Artery. Farnell thought that the clot in the Portal Vein should be treated with blood thinners, because he was worried that the clot could propagate and cause complications.
Unfortunately, he took the rug out from under us by saying that surgery is just not an option. He suggested that we get a biopsy of the Sister Joseph nodule. He also took a look at Mom’s catheter can said that drains often will leak when there is a buildup of fluid in the abdomen. He mentioned a “Denver Shunt” as the only other option for dealing with the fluid (astices) buildup, but didn’t recommend it because of concerns of complications.
So from our trip to Mayo, we learned the following:
- This problem really most likely is cancer recurrence. Hearing it from the doctors at Mayo made this seem a lot more real. I feel like I need to still say though, that despite what the doctors think, the clot could just be scarring.
- Surgery isn’t an option. Not even at Mayo.
- We should get the Sister Joseph nodule biopsied. While we don’t want to have proof that we’re dealing with cancer again, we do want to know what we’re dealing with.
- Using a blood thinner like Cumadin or Heparin has a lot of pros and cons. We may want to see a vascular specialist to help us make this decision.
- Going on Gemzar (aka Gemcitabine) for cancer recurrence has pros and cons. The pros aren’t great. The cons aren’t too bad either.
- Trying out a clinical trial is an option (there are about 27 listed right now). The purpose of a phase I is to determine dosage, so there’s a good likelihood of getting sick. Also, there aren’t any trials available now that look like cures. But this is an option if we want to do something.
Hey, that’s a pretty depressing list. No wonder I’ve been feeling kind of down the last few days. Mom is home now, continuing to deal with the leaking issue, and we’re all starting to try to figure out what all this means and where we go from here. If in reading through this, you have questions, please let me know.
We’ve gotten through the last couple years through a combination of a positive attitude, a blissful state of denial when things were going well, and generally just being very appreciative of each other. I hope that before too long, we can feel like we’re all moving forward with this new situation together. For now, I’ll borrow a line of Anne of Green Gables, “Isn’t it nice to think that tomorrow is a new day, with no mistakes in it yet.”
How we’ve passed our July days
July 29: It feels rather unfamiliar for me to be sitting down with my laptop to do a web posting. Our days have been packed full this month, and I’ve spent almost no time online. Our Netflix movies are from June… Summer is a good time to unplug. I thought I’d give a little update, though about what we’ve been doing with out days. Since my last post twenty one days ago, we’ve had lots of activities going on. Bryan had his wisdom teeth pulled earlier this month. His wisdom seems to be intact, and he even went back to work the same day.
Andrew’s day care provider, Karen, went on vacation from July 11-19. Fortunately, Bryan’s mom came to our rescue by flying up here to Madison to watch Andrew for a week. She and Andrew had some great times together playing with homemade play dough, going to the park, building towers, and spending a lot of nice time together. LuAnn is so great, and it was just fabulous to have a three-adults-to-one-child ratio in the house. I think back fondly on that week…
Bryan has been on a sand volleyball team this summer. They’ve been playing every Tuesday night, and Bryan really has enjoyed it. Hard to believe summer activities like that are more than half-over! While Bryan’s mom was here, Bryan and I went to a local baseball game hosted by Widen (Bryan’s work). It was a lot of fun to spend an evening watching the Mallards play ball, hanging out with friends, and enjoying a summer evening together.
I’ve had a couple travels for work. Last week, our summer board meeting was up in Minocqua, and while I just drove up for the day, it was lovely to spend a few hours up north. What a wonderful part of the state! On Tuesday and Wednesday this week, my Gathering Waters office had a summer retreat at Jack’s house down on the Wisconsin River. We camped and ate good food and jumped in the river to cool off, met for business for a while, but generally had a fun time together.
We head back to Jack’s with my family this weekend, and I’m looking forward to that. We’re planning on attending the neighborhood summer picnic this afternoon. These summer days sure are full!
Pictures from the last three weeks are in the gallery.
Two-year-olds in DC
July 8: We just got back this afternoon from a wonderful five day visit to visit our friends Grace and Tim and their son John in Washington DC. It was so relaxing and so much fun to hang out and enjoy summer days while watching our little boys play and explore. I’m John’s godmother, and you can find pictures from our past recent visits in the gallery (October 2005), (July 2006). Amazing how much these little guys have changed!
We arrived on the 4th, and Andrew and John did a good job of negotiating their own set of rules and procedures about how they played together. John is an amazingly verbal little boy. Bryan and I were pretty stunned at how much he can carry on conversations. The rest of the week we did pre-nap field trips. Thursday we went to the National Zoo to see the elephants, pandas, and hippos. Friday we took a bike ride through a beautiful forest to a playground near a creek where the boys had a blast splashing and throwing rocks while wearing their green froggie boots. Saturday we took another bike ride to a different park where the boys climbed and slid and ran and had a great time. Our friend Lara from graduate school lives in DC, and she watched the boys on Friday night while the four parents went out to indulge in a wonderful dinner at the Black Market Bistro. I highly recommend it to anyone living in or visiting the DC area. On Saturday night, Lara came over for a yummy supper cooked by Grace and Tim, and afterwards, Lara made crepes and we enjoyed a late-night dessert of warm crepes, cold ice cream and Nirvana Chocolate Spread (Nutella only better).
The flights to and from DC went really well, Andrew and John did a great job of getting along and even sharing, and I think we’re all feeling happy and rested and full of fun memories.
June flew by!
July 8: Here it is, the end of the first week in July, and looking back at my web posts from the last month, I realize that there is only four. Seems like we’ve been jumping from one major activity to the next all month long. What a nice month June was! We had fun with friends, I got to go to DC for work and a visit with Kacy, Andrew turned two amidst the loving support of his family and friends, and I turned 30! I have pictures in the gallery from the last week in June. They include some quiet time we spent with Granny Lu, Grandad, Ben, and Melanie, pictures from a photo shoot of kids we did at Indian Lake for Gathering Waters, and a few pictures from my birthday party on June 29. I have a table filled with wonderful birthday cards from my friends, and it makes me so happy to think of how lucky I am to have my life filled with such supportive, loving, and positive people.
Happy Birthday to Andrew!
June 23: Andrew has been going around all day singing, “Happy Birthday to Andrew!” Yesterday we went to Olbrich gardens with Vicki and Alex and a couple of their friends. Andrew had great fun trying to throw rocks into the pools (not allowed) and running up and down the paths (very encouraged). Afterwards, we went to Michael’s Custard for a yummy lunch. Granny Lu and Grandad arrived in town in the afternoon, and we had fun planning for Saturday’s party and playing together. Dinner at Ella’s Deli ended our fun day together.
This morning, we had Andrew’s second birthday party at the zoo. Andrew had nearly his entire immediate family gather together to celebrate. After a romp through the zoo, we had a picnic and a Noah’s Ark shaped cake. Loads of pictures are in the gallery.
June days
June 23: I can’t believe that it’s been two weeks since I last posted. I guess that being out of town for five days makes that more likely:) We have been really enjoying the weather and the flowers and the outdoor activities these last weeks. I went to Washington DC for a fun/work week, and Bryan and Andrew held down the fort here in Madison quite well while I was away. I put together Andrew’s second year album, and it was a lot of fun to look back through all the changes that have happened over the last year.
We got a troubling phone call recently from my mom’s sister, Aunt Kate (also known as Dear Sweet Great Aunt Kate or DSGAK). Her husband, my Uncle Greg had kidney cancer several years back. Just last week a scan discovered a new growth in his lung. They are looking into treatment options, and they are close in out thoughts these days.
While I was in Washington DC, I got to spend a couple days with my dear friend from high school, Kacy (now Kate). She, her partner Rueteger, and I enjoyed eating some delicious meals, hiking at Great Falls, and having lots of time to catch up. While I was in DC, I also got to have lunch with Grace and Lara…friends from graduate school. For dinner on Monday night, I was able to see my good friend from Carleton, Andy, and his wife Anne Marie, and their little kids, two-year-old Kasha and one-month-old Ciaran.
On Tuesday, I headed up to the Hill and met with five of Wisconsin’s representatives. Afterwards, I headed over the the capitol for a tour, and I was lucky enough to see a vote in the Senate. It was pretty cool to see a lot of the Senators including Clinton, Kerry, Lieberman, Obama, and Kohl, as they did their politicing. Earlier in the morning, I walked within a couple feet of Hilary Clinton. It was pretty cool!
Pictures from these days are in the gallery.
The Bambino Babies are Two!
June 9: We had a party for our Happy Bambino group at Tenney Park Beach tonight. As always, it was wonderful to get to see all the parents and to marvel at how amazing and adorable all the little ones are. Their birthdays range between mid-May and late-June, so this was a birthday-partyish beach party for them all. Pictures from the evening of lots of adorable kids are in the gallery. For a comparison, see the pictures from the winter party, and their 1 year birthday.
Andrew had a wonderful time playing in the water and with the sand. It was his first time at a beach, and I think we’ll be heading back again soon. We all shared a delicious potluck dinner and fed the little ones cupcakes. Andrew had his first bite of chocolate cake, and it appears that he was quite happy and would like to eat it much, much more often.