King For A Day

Uncle Thomas and Aunt Kerry sent us a King Cake from New Orleans and by tradition, a little baby figure is baked in to the cake. The kids decided that whoever got the piece with the baby in it would be "king for a day." Well, Sam got the baby and we made him a crown today with the baby stuck to the front. :)
We also went sledding since the weather finally warmed up a bit (it was 22F, up from -10F in the past few days!). As you can see, Sam had a great time!

15 Jan

Last weekend was busy - on Saturday, Ben took part in a cello workshop that took up most of the day and he really enjoyed it. The boys and I had just enough time after that to get out to the sledding hill - played in the snow until after dark. :)
On Sunday, we all went to a local indoor water park and spent all day playing in the water. The whole family was exhausted after that!
Sarah is doing great - got another round of tumor markers this week and the numbers are staying low, and she's keeping up with her trips to the gym, as well.
This week, we'll just focus on staying warm since we've got wind-chills going way below zero degrees F in Chicago tomorrow and snow everywhere. Brrr!

Christmas

Santa was good to us this year -- lots of presents under the tree, although 7am felt pretty early on Christmas morning!  It was barely getting light out.  You can see Ben and Sam here checking out their stockings.  They both have their matching Christmas pajamas on, which they always look forward to getting each year on Christmas Eve.

Shortly after Christmas, we were also happy to get a visit from Elizabeth.  And then we just celebrated the New Year here in Chicago.  Best wishes for the New Year to all!

Advent

We had a really busy time leading up to Christmas!  Alan's parents were with us for the second half of Advent and celebrated Christmas with us, which was very nice.  Since they live in Texas, the snowy white xmas was a big treat this year! 

The first pic shows Sam in his pre-school holiday music show cracking-up at something.  After that you can see our little shepherds, dressed up for the children's Christmas pageant at our church.  Then there's a pic of us decorating the tree, with Oma helping out.  Finally a quick pic that hints at how hard it was to get the picture we ended up using for our photo xmas card!  (all you parents out there know exactly what I'm talking about!)  Getting both boys to smile at the same time & not make a face or poke each other is always a feat...

But, we got everything done and had a great Advent time. :)

Snow Time Like The Present

Well, we got more snow than I expected and I had to shovel. Good thing I had help! Sam and Ben love to get out there with me and clear the snow from our driveway. They get a big kick out of standing in way of the snowblower's chute as it spits out a continuous stream of snow on to them. Since it's super cold right now (7F when I got up), I think we'll have the snow around for a bit. We also got bundled up and went sledding yesterday, which the kids really enjoyed!

Thanksgiving

Elizabeth came to spend T-day with us and everyone had a great time. We had a huge and delicious meal which you can see here, and of course we have much to be thankful for!
We also got another set of tumor markers back for Sarah. The doc said they are not good, the are "very good!" They were the lowest they've ever been so far. (CA27-29 = 6.7)

20 Nov - Some Good News

Here's a new family picture that we had to take for one of Sam's pre-school projects that came out nice. Also, you can see Sam as an indian when he had a pow wow at school.

Now for the good news! Sarah just got a PET scan and the results came back showing no new metastases and notably no liver lesions. Those SIR spheres really did the trick and we're so glad we kept fighting to get the insurance approval instead of going the easier route and getting the chemo-embolization done. The scan did show numerous bone mets in her spine but those have been there since the beginning and are categorized as "sclerotic" lesions, which means they are growing slowly enough that the bone has time to regrow at the boundaries of the spots. That, together with Sarah's very low tumor markers, puts us in a pretty good place right now and Sarah is really enjoying not being on constant chemotherapy.

We also went to Houston for homecoming and Sarah's 15yr college reunion. After catching up with old friends, Sarah went up to Dallas to greet Nicole at the finish line of the 3-day Walk For Breast Cancer. Thank you so much to all who have given generously in sponsoring Nicole's walk -- she has raised almost $6,000!

Halloween

Quite a crew, huh? Halloween was fairly warm this year and everyone seemed to be trick-or-treating early, so we joined in. Ben might as well have been dressed as a pirate -- there was a lot of candy loot. I just hope we finish it (or "lose" it) before Christmas rolls in. :)

The Indian Guides Fall Campout

Ben and I went to the Indian Guides Fall campout again this year just before Halloween and it was a great trip. He loves the activities, hanging out by the camp fire and staying up late... Who wouldn't? The weather was perfect and we even had a "haunted cabin" event in the evening where the kids dress up in costume and trick-or-treat to the cabins which are decorated for Halloween.

3-Day Walk for Breast Cancer

My best friend, Nicole, is walking in the Susan G. Komen 3-Day Walk for Breast Cancer this weekend in my honor. She has been a huge moral support to me over the last two and a half years, and now she has committed herself to raise funds for a cure by walking in this event. I'm writing to ask you to consider supporting her efforts by making a donation. She has set a goal of raising $4000*, and with your help, I know she will surpass that goal!

Please visit her fundraising page:
http://www.the3day.org/goto/Nicole.Smith
to make a donation of any size to help find a cure for breast cancer!

*EDITED: She has raised her goal to $5000, and she's almost there! Thank you so much to everyone who has donated!!

Results are in ...

I got the results from my brain MRI and blood tests today. The pituitary tumor is stable, and the rest of my brain "remains unremarkable". I love that wording! My tumor markers were both normal, which means ... I get to take a break from chemo! They checked my estradiol levels (estradiol is a form of estrogen) and I am not in menopause yet, despite monthly shots to shut down my ovaries. I suspect that I will have to start taking Tamoxifen again. And I will probably have my ovaries surgically removed sometime in the near future. But right now, I'm not worried about that ... just so happy to not have to get chemo for a while. Hopefully it'll be a good, LONG while!

Time for an update!

Things have been busy around here since we got back from our vacation. Ben started 2nd grade, and Sam started his last year of preschool. The pictures above are First Day of School pictures (unfortunately I didn't get them in for haircuts before school started!). Cello lessons have started up again, and Ben already had his first concert last week. He's also taking a basketball class in preparation for playing on a basketball team next month. Sam resumed swimming lessons and started playing Pre-K soccer. He had his first game this past weekend:

Needless to say, we spend a lot of time driving to and from school and the various activities!

I had a liver MRI last Friday and got the results today. The large tumor on the left lobe of my liver is still seen on the MRI, but according to the PET it is inactive and therefore not a cause for concern. The smaller satellite tumor is no longer seen. There is a lesion on the right lobe of my liver, but the radiologist thinks it is likely a hemangioma, which is a benign tumor made of blood vessels. I will have another MRI next month to check on it, but I just checked my MRI report from March and there was a lesion that was likely a hemangioma back then. So I am fairly confident that we are looking at a benign tumor. The overall impression of this current MRI is that there is "no evidence of progressive metastatic involvement". Yay!

Tomorrow I have a brain MRI to check on the pituitary tumor. If that is stable and my tumor markers (which they drew blood for today) haven't risen, I will finally get to take a break from chemo. I should get a call from my doctor on Thursday with all of those results, so I am holding my breath until then!

Back from Vacation

As you can see in these pictures, we had a great time on our family vacation to Florida! Spent lots of time swimming and collecting sea shells. I took a picture of Sam's foot standing on the beach where there are so many shells in some spots that you can't even see sand. Also, there's a picture of the sunrise viewed from our balcony which overlooked the resort's beach and pool area.

Tropical storm Fay did make us evacuate Sanibel island on Monday night (stayed in a Ft Myers hotel on higher ground), but we were right back on the beach the next day after the storm made landfall to the South and had passed on its way up to the Florida panhandle. Overall, we had great weather except for a few rain showers and the stormy day.

Sarah is feeling fairly well -- she started another 2 week Xeloda cycle on Friday and hasn't had any significant nausea or fatigue so far. The main side effect is that the skin on her feet is continuously peeling off (like after a very bad sunburn) and it makes them tender and uncomfortable to walk on. We're in a relatively good place right now. We're continuing to monitor tumor markers and Sarah will get another set of MRIs (brain and liver) near the end of Sept. If those are clear then we hope she can take a break from chemo -- what a relief that will be after this marathon of over 1.5 yrs of nearly continuous chemo!

Although we can't ignore that progression almost certainly lies somewhere in the future, we are very thankful that Sarah's many treatments have bought us precious time - time for cancer research to continue advancing towards a cure, and time for us to spend together. As always, we are focusing on living life to its fullest today and only worrying about the future when we need to in order to make the best decisions about what to do next. Let's pray for a looooong "quiet" period for Sarah!

More good news!

Today I was in for treatment, and my oncologist handed me a copy of my blood work from last week .... My tumor markers have dropped down into the normal range!! CA 27.29, which topped out at 172.6 at the beginning of June, has dropped down to 14.9. Normal range for CA 27.29 is 0 - 38.6. Just two weeks prior, it was 53.9, so it has taken quite a nose dive! This correlates with the clean PET scan ... the numbers were just lagging behind a little. It's starting to sink in that, for the time being at least, I am NED (No Evidence of Disease). Wow!

I also tried to get a better understanding of the chemo plan from my doctor, and when I asked about taking a break to save the chemo for future use, he agreed that if the MRI next month looks good, I could take some time off of chemo and just continue on Herceptin (targeted therapy ... no side effects like chemo), Zolodex (ovarian suppression ... tolerable side effects) and Zometa (bone strengthener ... also no side effects for me). So 21 months after I got on this mets roller coaster, I might get to step off for at least a little while and take a breather. I *still* can't quite believe it!

The docs have weighed in

I talked to both my oncologist and my interventional radiologist this week about the PET scan results. The interventional radiologist called it a "complete response" to the treatment. He said the reason the report says that I had a resection is because they didn't see anything in the area where there was uptake in the last PET scan, so they assumed I must have had it cut out (they obviously didn't read the form I filled out detailing all my previous surgeries and the SIR Spheres procedure!). He wants me to have a follow-up MRI in another two months, and it sounded like after that I'd only need to see him if I needed another SIR Spheres treatment!

My oncologist called the PET results a 'pleasant surprise', but he is not planning on changing my treatment at all. I have finally recovered from the horrible Xeloda side effects, so I got to start my next round of Xeloda today. We have reduced the dose again (it's now half of the dose I started on originally) and we're hoping that I will be able to tolerate this lower dose. I was really disappointed to hear that I will continue on with chemo indefinitely, so much so that I didn't ask the right questions to understand *why* nothing will change despite a clean PET. I plan on asking the right questions on Monday so that I can understand the reasons. Perhaps then I will feel more like celebrating ...

PET results are in ....

I finally got a copy of my PET report this morning. I *think* it sounds really good, but it almost seems too good, if that makes sense, so I'm waiting to hear what the doc's interpretation is before I really celebrate.

Here's the wording:

The patient has undergone resection of the previously demonstrated lateral left hepatic lobe metastasis since the prior outside study. There is physiologic accumulation of tracer within the remaining liver tissue, with no suspicious hepatic uptake identified at present.

Tracer distribution throughout the remainder of the imaged body is also physiologic, with particular normal concentration noted within brain, myocardium, gastrointestinal tract and genitourinary tract. No areas of abnormal uptake are identified.

The lungs are clear. The heart is normal in size. The bowel is normal in caliber. There is no pleural effusion, pericardial effusion or ascites. Allowing for the lack of intravenous CT contrast, no focal visceral organ lesions are seen. There is no hydronephrosis, and no abnormal gynecologic findings are seen. .... No lymphadenopathy is identified.

IMPRESSION: Interval hepatic metastasis resection. No malignant findings at present.


There were a few other random observations in there that I took out, but that's everything relating to possible cancer.

The previous PET showed uptake in the left hepatic lobe (obviously) and also in the left supraclavicular lymph node and 2-3 lymph nodes in the right upper retroperitoneum. It also showed a solitary site of bone metastasis in the mid thoracic region.

And now, there's nothing ... hard to believe. The nurse I talked to about the report said the doctor (interventional radiologist who did the SIR-Spheres procedure) was very pleased, but that they didn't have the disc yet, so he was waiting to get the disc and look at it himself. So, I'm feeling like maybe they missed something that they'll find on a second look ... I'm just not used to getting *all* good news.

I probably won't hear from the docs until next week, so I think we'll spend the weekend feeling cautiously optimistic. Can't celebrate too much yet anyway because I'm still suffering with tummy troubles. Going in for more IV fluids today ...

PET scan done ... results tomorrow?

I got my PET scan done today. They said my doc should have the results tomorrow ... we'll see.

It's been an eventful week in cancerland. Mostly not good, unfortunately. Tomorrow morning I will attend the funeral of my friend, Candie Jaeger, who died last week at the age of 32. Candie befriended me at the doctor's office on the day I was diagnosed with liver mets. As Alan and I sat shell-shocked in the treatment room, while my first dose of chemo for mets poured into my veins, Candie introduced herself - at the time, she was a nearly 7 year survivor - and gave us a pep talk. She talked about how she had beaten liver mets and how you have to keep fighting - never give up. And that's what she did, until last week, when she finally let go on her terms. She was a real inspiration to me and many others, and I will miss her very much.

I've had my own challenges this past week. Just as I finished up my second round of Xeloda and was looking forward to spending the weekend with my friends Shelby and Nicole, I was hit hard with another fun side effect. Let's just call it "tummy trouble". Along with tummy trouble came the inevitable nausea, so I spent most of my weekend in Birmingham not eating and near a bathroom. By the time I got home on Monday, I was pretty severely dehydrated, so Alan had to take me in for some IV fluids and a couple of shots to help with the tummy trouble. I was feeling better today, although still a bit dehydrated, so I went in for another liter of fluids. This evening, however, tummy troubles have returned with a vengeance, so I guess I'll spend my third day in a row tomorrow getting IV fluids at the doctor's office. It's what I need to do to avoid being hospitalized (yikes!). I did have a nice time with Shelby and Nicole, despite all the tummy troubles.

One bit of good news amid the bad is that my tumor markers have taken a huge nose dive! CA 27.29 is down to 53.9 from a high of 172.6 six weeks prior. We are hoping that this means that the SIR Spheres are doing their job. Tomorrow, hopefully, the PET results will support this theory. Stay tuned ...

Sam's First T-Ball Game and an update

Here are some pictures from Sam's very first T-Ball game this morning. I took them with my phone, so the quality isn't great, but I am so impressed with myself that I figured out how to send them via Bluetooth from my phone to my computer ... all by myself! Sam batted twice and ran to first base (not third as he had done in practice) both times. He played third base and short stop, but he had more fun kicking the dirt than paying attention to the batters (as did most of the other kids on the field)! Ben has been playing Rookie ball (coach pitch), and he's done very well. I will take some pictures at his next game and post them soon.

I scheduled my PET scan for next Tuesday, after I get back from a second annual girls' weekend with my two best friends from high school, Nicole and Shelby. Last summer, they came up to Chicago for a weekend in the city. This summer, we are going to Shelby's neck of the woods, Birmingham. We plan to stay in a nice resort there and just hang out and visit. Our plans to venture further out to Atlanta, Chattanooga or Asheville had to be canceled due to the side effects I'm having on my current chemo. I've developed hand-foot syndrome, leaving my hands and especially my feet red, hot and painful. It often feels like I'm walking on shards of glass, so I need to stay off my feet as much as I can.

The high tumor markers aren't worrisome to my doctor yet. They're checking my tumor markers again this week, and hopefully, they'll be on their way down now that I'm back on chemo. The PET scan will also give us a look at what's going on, so next week we should have good idea of how things are going in my liver and elsewhere.

MRI Results

Good news! The pituitary tumor has decreased in size to 2mm x 5mm x 6mm. That's down from 4mm x 7mm x 9mm 3 months ago and 1.3 x 1.2 x 1.2 cm at the beginning of March. The rest of my brain is "unremarkable", which is good in MRI-speak! I haven't spoken to the neurosurgeon yet, but I suspect I'll get another MRI in 3-6 months to check on it again. Considering I wasn't on any chemo for 2 1/2 out of the last 3 months, I'm starting to think this tumor may not be a met after all. As long as it stays small, I won't have to have the surgery to find out for sure!

I also got a call from my SIR-Spheres doctor yesterday. He wants me to get the follow-up PET/CT scan at 2 months rather than 3 months. I'm not sure why he changed his mind, but I'm glad I'll get a chance to see what's going on sooner - especially with the higher tumor markers. I don't have any aches & pains (aside from chemo side effects) or other symptoms of cancer elsewhere, so I hope the PET/CT won't show that it has spread anywhere else. I'll schedule it for sometime in the next couple of weeks, so we'll know for sure pretty soon!

30 June

Here's a smiling Sam pic. He's as cute as ever... and he sure keeps us on our toes.

Sarah's not feeling too bad - the sensitivity on her hands and feet is getting a bit better. Quick update on tests: she had tumor markers measured just before starting Xeloda three weeks ago and her numbers were the highest we've seen come back on tests, but we think they could actually be down from their peak while she was off chemo and before the SIR treatment. CA-27.29 = 172 and CEA = 133. We're not sure what to make of this but these may not be bad or unexpected given how quickly the liver lesion was growing just before the procedure. Our hope is that the next round of markers will be down significantly if the liver met was the primary contributor.
Sarah also got a brain MRI today to check up on her pituitary lesion. We'll get results either tomorrow or Wed -- she hasn't had any pain or symptoms so we hope that nothing adverse shows up. But, Sarah's approach is always to be braced for any news good or bad - sort of an emotional survival tactic after past hard knocks. Ok, more to follow when we get those MRI results.