2 July - New Problem Developed

Well, instead of getting better Sarah now feels worse. Despite many tests, lower calcium levels and ok liver function test results, Sarah developed a sharp pain in her abdomen Wed night and feels even more nausea now. After a day and a half the pain is getting much better on its own even though no one can pinpoint what is causing it but the nausea remains and Sarah is pretty much sleeping all day in the hospital, trying not to move if she can help it. Threw up twice in the past day despite anti-nausea medications. The docs are doing more tests while waiting to see what other symptoms might help them determine the cause of this, but so far they are stumped. I'm spending most of each day in the hospital with Sarah and returning home to be with the boys in the evenings. Hopefully we'll find something soon that indicates what's causing her nausea and how it can be treated. Other than that she seems stable - all her blood test results look pretty good (relatively) and her fevers have not come back...

30 June - Still in Hospital

Here's a pic of Sam and Sarah in the hospital bed this past weekend. Sarah was feeling pretty good and was eager to get home yesterday, but today she felt much worse - nausea, no appetite and very drowsy. The docs think it is due to a spike up in her Calcium level. We aren't sure why that happened, but she got a partial dose of Zometa today. That should lower the Calcium level over the course of 24 hours and we hope she'll feel better again so she can come home. The onc said she can get abraxane chemo again as soon as she feels up to it, which was a big relief for us.

28 June - Not What We Expected

Sarah's doing fine after the ERCP procedure, but it didn't go quite as we expected... The bad news is that the doc was not able to replace her stent but the good news is that he clearly saw bile exiting her bile duct so the stent is working fine. Apparently sometimes a patient's stomach and upper intestine can be twisted and prevent access with an endoscope designed for stent work. He tried for an hour and it just wasn't going to happen today. We can definitely try again, but it sounds like the stent is actually designed to last for up to 6 months. Now that we consider it, this stent is on the wide side and the doc was happy he was able to get it inserted 3 months ago - so if it is not plugged, we're better off leaving it in for now!
So since IV antibiotics have actually improved her liver function over the weekend (her bilirubin is already down to 0.8 again) I think we'll focus on treating a potential infection and try to get her liver numbers down low enough to allow chemo again. We plan to talk to Sarah's oncologist tomorrow and discuss how long she needs to stay in the hospital and what the plan for treatment is.
Sarah bounced back quickly after the procedure and is feeling pretty good now.

27 June - Update on Sarah

Quick update: Sarah spent the weekend in the hospital, but her condition is still a mystery. Her bilirubin got up to 2.2 but then started dropping on it's own yesterday. Fever has also not been a problem since she got admitted to the hospital last Friday. She's feeling relatively ok - now well hydrated and getting two kinds of antibiotics plus anti-nausea meds (although still not sure if they are actually helping). Since it's time for the stent to come out, we're going to proceed with the ERCP to replace her bile duct stent on Monday. Small chance she'll be back home Monday. Tues is more likely. Hopefully this will enable her to feel better, or it will head this requirement off at the pass.

25 June - Back In Hospital

Well, it's been quite a week and now Sarah is in the hospital. Yesterday we got the results of her MRI. Overall it was good news since the big solitary liver tumor was not visible (although quite a few small ones were there) so it seems that Abraxane is doing some good. But despite that, Sarah has been gradually feeling worse and her doc thought it might be her stent that needs replacing, so we set up a procedure for next Monday to have it replaced. Because of that she also didn't get chemo again yesterday. Today her wandering body temp kicked in again and she got up to almost 103 plus she had some nausea. Since that's higher than it has been and she basically stayed in bed all day, her doc told her to go to the hospital. So she's been admitted and they are going to try and figure out why she has an elevated temp. The ER doc decided to run a port culture to see if it was infected - that would definitely explain the elevated temperatures Sarah has been running for over a month. She got a whole battery of other tests in the ER so we'll see what they show.

12 June - F.A.B. 5K!

The F.A.B. 5K was a huge success with great turnout of almost 300 people and $15,000 raised to benefit the Breast Cancer Research Foundation!
Lesley, Bonnie, Kelly and Melanie (organizers) - you are awesome and we can't thank you enough for doing this for Sarah, for your loved ones and all other women who face breast cancer. It is so uplifting to take part in something positive like this amidst the day-to-day struggle with treatments, doctors visits and the unrelenting uncertainty. And a huge thank you also to the many volunteers and people who came out to participate. What a moving experience it was!
In these pictures that I was able to take, you can see Sarah at the starting line, Sarah in the pace car with Dave L., and a picture of Kelly and Bonnie (how did I not get a picture of Lesley and Melanie!?). There's also a video of the race start where you can see the many people that participated in the race.
After the race, Ben, Sam and I headed up to an Indian Guides campout which was very muddy but also very fun. One of the few times I'm comfortable telling the boys, "sure, get as dirty as you want - go nuts and have fun with it!" But we did have some "battle damage" - Ben's usual upset stomach from over-indulging on the junk food buffet and Sam's burnt finger from touching something that was hot from the campfire. Well, overall it was a great campout.
Quick update on this past Thursday as well: Sarah's body temp started getting over 100 on Tues and Wed so the doc had her take a week off of chemo and prescribed some antibiotics in case she had a low-grade bug or infection. When her temp gets up there, Sarah really doesn't feel good and it makes for a tough day. We're hoping that she'll get some relief and feel a bit better after this week.

11 June - Sarah's Birthday!

It was a very eventful day today. Among a few other things like having the last day of school and getting a dog, the most important thing is that we celebrated Sarah's birthday! Here she is about to blow the candles out. She really enjoyed the phone calls, cards and flowers that people brought by. And it was also nice that her brother Thomas was in town to celebrate with us. We finished the day by looking at some pictures from Sarah's childhood using a vintage slide projector and real slides.
We also have an update on Sarah's CT scan results - they put a little bit of a damper on the good news about tumor markers being down. The CT showed shrinking tumors in all areas except her spine and especially her liver - quite a few new spots showed up in her liver on the CT, but she's getting an MRI to confirm and get more detail. In the mean time we're going to continue the Abraxane treatments for her until the MRI results are in. She got treatment again yesterday and is feeling decent but a bit tired tonight. Big day tomorrow with the F.A.B 5K first thing in the morning!

11 June - Got a Dog

Well, we took the plunge and got a new dog. After meeting several dogs we settled on this guy - Ben didn't seem to have any allergy issues, he's cute and just the right size, and he seems sweet and playful with the kids. Here's a video of him. We decided to name him Satchmo, which is the nickname of Louis Armstrong the famous musician from Sarah's home town New Orleans! In a funny coincidence, Satchmo's birthday is the same as Sarah's - he is one year old today. :)

9 June - Finally Some Good News!

Sarah's tumor markers and circulating tumor cell test somehow didn't make it through the test lab last week but they took a fresh blood sample last Thurs and we just got some good results back! Sarah's tumor markers are down significantly (CEA and CA27.29 are both down by around 100). And the circulating tumor cell test came back with zero, which is the best number you can have. So, it looks like the Abraxane treatments are doing some good and we'll continue them.
The other big test result we're awaiting is her CT scan which we'll know about tomorrow. Need to see if the large liver tumor is responding to treatment or not. Given the lower tumor markers, we're cautiously optimistic.
Sarah continues to feel a little better each week although her body temp still goes up and down periodically. She's gotten out to do some shopping now and then and also has attended some of the boys' sporting events. I think she really enjoys the freedom of feeling good enough to get out of the house every once in a while!
We're conscious of the fact that Sarah still is in a weakened state overall, but this positive trend feels good - definitely much better than the dire straits of the past few months.
We're looking forward to the F.A.B. 5K fun run this weekend where Sarah will ride in the pace car! If you haven't see it, check out the blog for it. You can donate even if you aren't running it - and all donations go to the Breast Cancer Research Foundation. http://fab5k.blogspot.com

31 May

What a busy Memorial Day Weekend. I'm more exhausted now on Monday night than when it started! Had quite a honey-do list and made it through just about everything. Ben had his last cello recital this past Tuesday and played very nicely. Although stopping cello is the right thing for him at this point, I know he'll miss his great teacher Mrs. Hagari (in the picture with him) and the friends he has made in the music program along the way. The other picture is of Sarah and me in the audience.
Sarah got another Abraxane treatment last week as planned and we'll find out this coming Thursday how her tumor markers look and we should also get results from a new test that determines the level of circulating tumor cells in your blood. Based on these results, we'll talk to her onc about what the treatment plan is. Sarah is feeling some numbness in her hands and feet, which is a side effect of Abraxane - but she says it is still manageable at this point. It's worth it if the Abraxane is helping, and the numbness should not be permanent.
Sarah's body temp is still fluctuating and it's hard to know whether she'll feel good or not on any given day, but today we did all go to the local Memorial Day Parade together. Ironically, we got a heavy rain shower right as the main part of the parade was in progress! But that wasn't too bad and the rest of the day was fun, including a post-parade barbeque/party in the afternoon.

25 May - Just In Time For The Warm Weather

Sarah did end up asking me to shave the rest of her hair off last Saturday - just in time for the sudden heat wave here in Chicago! So here's a pic of Sarah sporting the latest summer fashion in our backyard and sitting at the sidelines of Sam's soccer game this weekend. Sarah is still getting sporadic fevers which make her want to lay down and rest, but she felt better today and got out to do an errand.

21 May - Another Chemo Week

Not much new to report this week. Sarah got Abraxane again on Thursday along with Herceptin. She's feeling fairly good except for some fatigue probably due to a low red blood cell count, so she got a booster shot for that. She still has a fever most days ranging between 99 and 102. Her doc says that could be due to the liver tumor cells dying off - we like the sound of that! It could also just be due to the presence of liver tumors in the first place, though.
The Abraxane is finally taking its toll on her hair which has been falling out much faster this week - I think she'll want me to shave her head this weekend. Sarah doesn't like the feeling of it coming out when she runs her hands through her hair - better to just get it over with in one shot. Next week they'll run her tumor markers to see how she's responding to the Abraxane. We'll get the results in the following week and talk to the doc about getting scans and whether to continue on Abraxane or switch to another chemo drug (hopefully continue!). Her liver seems to be tolerating the Abraxane well - her liver function numbers are only slightly above normal range.
Ben and Sam are doing great. Coming up on the end of the year. Ben has a cello recital next Tues which will end his cello career for a while (pending desire to resume at some point in the future), and Ben and Sam are both looking forward to our Spring campout coming up soon right after school ends. I think we'll start them both in a local karate club this summer and Sam is still insisting he wants to take guitar lessons next year, so we might be doing that.

16 May

Sarah got Abraxane treatment again last Thursday and also got the re-evaluated results of her last CT scan (now compared to the previous scan taken right before it). Overall it seems that most tumors are getting smaller, but not in her liver. There's now a 1.8cm small tumor in addition to the much larger one which grew to 6.7cm. The scan was from the point she switched over from Taxol to Abraxane, so now we need to see how this round of Abraxane works. We'll run another set of tumor markers in 2 weeks in order to see if the Abraxane is bringing the overall tumor load on Sarah's system down, but we might still have to worry about her liver tumor even if they come down.
Sarah got a fever this weekend (we think this is due to the treatment) and unfortunately pretty much spent the weekend on the couch. Peaked at 102 and is now down to 99. We're wondering if this is going to happen again after treatment this week...

8 May - Mother's Day Flowers

Two nice pics of Sarah with Ben and with Sam on Friday as they brought home Mother's Day things from School.

6 May - Busy Week

We had a busy weekend of sports and an Indian Guides museum sleep-over. As the pics show, the boys had a great time trying out every exhibit in the place! Floor was kinda hard to sleep on, but no-one complained too much. Ben had his "Fiddle Fest" this week where he performed with his cello class and Sam will have a class performance for the parents tomorrow at school - Sarah and I both plan on going.
Sarah got Abraxane treatment again today. She felt more energetic this week and we were even able to go out to dinner last night for our 15 year Anniversary! She was running a fever last weekend but the doc says it could be due to tumor cells dying as she started a new chemo last week - that's a hopeful thought after being worried about the high temps. Overall it's hard to say what the numbers are telling us. Her liver numbers got a little worse but they are still pretty close to normal range except Alk Phosphatase. The plan is now to wait until she's had 4 Abraxane treatments and then do a PET scan if her tumor markers have not improved. So two more weeks to go before that point.
For Sarah, it's just such a relief to have a little more energy -- she drove a few times this week on her own (but she still can't walk much). We have a handicap parking pass now and she makes use of it so the walk into a building isn't so far.

30 April - Started New Chemo

Sarah got her Abraxane today along with Herceptin. She's still feeling very weak and has trouble climbing a flight of stairs - the course of antibiotics didn't seem to have any effect. Despite getting two CT scans and a brain MRI yesterday, there's still no explanation for how bad she feels. Her brain MRI didn't show anything noteworthy. The CT scans did show some increased lymph node tumors (but they are small) and that her liver tumor has grown, but her liver seems to be functioning very well right now despite the tumor there. The lung stuff is suspicious, but the report said it didn't look like mets - not sure what it is at this point.
Sarah's onc thinks she might be feeling this way because of the liver mets but it didn't sound conclusive. Abraxane worked well for her last time so we're hoping that it will improve the situation after a few treatments. We'll just have to hope, wait and see. Sarah will also be getting a PET scan but it takes a while to get approved and scheduled so it'll be a week or two before we get those results. I don't think the PET will change the treatment plan, but it will be good to know where the hot spots are so we can monitor and take action as needed.

22 Apr - No Chemo This Week

Sarah got some more blood test results back and her liver seems to be performing even better than before, but she still is really short of breath and lacks energy. And her tumor markers have actually gone up quite a bit (CEA of 250 / CA27.29 of 370) and are at a new high. The doc was worried she might have a blood clot in her lungs so we did an immediate CT angiogram today, but thankfully there were no clots (and no tumors) and it looks like she has pneumonia. So she started on antibiotics which will hopefully clear that up and get her feeling better. Since tumor markers are up, her onc wants to switch her chemo to Abraxane, which she's had good results with in the past - and it's ok to take now that her liver numbers are good. Since Taxol clearly isn't holding back her disease but does stress her body, she's taking a week off before starting on Abraxane next Thurs. We'll also get a PET scan of Sarah's upper body to see where the tumor activity is that is driving her markers up.
We're hoping now that Sarah will soon feel a little better after the antibiotics start helping. But some very key scans are are coming up next week...

15 April - Treatment

Couple of pics this time - Sarah sitting on the couch with one of the shawls she got from our church's prayer shawl group, Sarah reading a bed-time story to Sam, and a very happy boy on Easter morning!

Sarah got Taxol again today. And, her liver continues to improve. Bilirubin is now 0.9 which is in the normal range and the other numbers are also coming down. She finished radiation today so hopefully that did what it was supposed to - follow-up with the doc in a few weeks to make sure.

Now the new number we're watching is her calcium level, which is out of normal range but not critically high. Turns out high calcium is a frequent symptom of advanced cancer which is caused by mets growing in bones. It's not so high that it needs to be treated at this point and we're hoping the chemo and Zometa will help control it at the source.

Sarah is now driving occasionally, but only short trips where she doesn't have to walk much - and outings really wear her out. Our new nanny, Marie, started this week and has been very helpful.

So, overall it feels like we're in limbo. We're in a much worse place than before, but things seem to be in a fragile state of balance right now - and emotionally I think we've been able to "catch our breath" a bit.

7 April - More Treatment

I'm singing the same song recently here... Sarah's bilirubin was down to 1.6 from her blood test last Thursday but she is still feeling very weak and fatigued. Just walking in the house or lifting her arms for extended periods of time tire her out. We're not sure what's causing that, but she is getting getting Taxol and radiation treatments. Hmm. It'll be a long treatment day for Sarah tomorrow (Thurs): Taxol, Herceptin and Zometa - so together with getting premeds and anti-nausea infusions, it stretches to 3-4hrs of being on the IV drip.
We did find a nanny and she starts on Monday. She seems great and we hope this will work out well! And now that frees up my parents to return home so they are headed back this weekend after their extended stay (long for them, but very helpful for us!).

2 April - Got Chemo

Sarah got another round of chemo this Thursday and her bilirubin was down at 1.6(!) based on her Tues blood test. So, her liver is working better now -- but she still is not feeling a ton better. The good news is that it looks like she'll be able to continue getting Taxol treatments, which should help fight tumors anywhere in her body. She's also 3 treatments in to her course of 12 radiation treatments.

Ben and Sam are enjoying the suddenly warmer weather and even got a little slip n slide action in today. :)

Hope everyone has a Happy and Blessed Easter weekend.