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.

30 March - Radiation Starts Tomorrow

Ok, we had our appointments and everything is on track. Sarah starts radiation treatment tomorrow and we're still planning for her to get chemo on Thursday. What a week...

The goal of the radiation is to prevent dangerous bleeding and to hit the "pause button" in terms of tumor growth. The doc said that a dose to wipe out the tumors would have to be much higher and was not an option. Sarah still doesn't feel too hot, but definitely better than before the bile duct stent was put in. I'm going to drive her to chemo treatment.

Ben and Sam are having fun in school so far this week after being out for Spring Break for so long. And they love having Uncle Thomas, Aunt Kerry as well as baby cousin Jane in town, and also of course the grandparents! No shortage of attention there.

28 Mar - Chemo and Radiation Week

Strange to think this way, but we are glad (?!) that Sarah will be able to do another chemo treatment sooner than we thought thanks to her bilirubin coming down to 2.2 last week. Plan is to do Taxol again this Thursday, which is better than waiting another week. But before that she may begin radiation treatment for her abdominal mets in the uterus/cervix - could start Wed and should be either 2 or 3 weeks long at 5 days a week.

Sarah is holding steady, feeling better than a few weeks ago but still easily fatigued and keeping physical activity to a minimum.

Ben and Sam are keeping busy with dad, grandparents and Uncle Thomas all doing things with them over spring break. Thomas even took them to Medieval Times today which was a huge hit. :) Live fighting and eating with your hands - what could be better? They also enjoyed going to an outdoor historical farm and grounds called "the Grove" with oma and grandpa.

24 Mar - Bili Down

Well, a mixed bag today... the good news is that Sarah's bilirubin is solidly trending down, which means her liver function is improving. We learned yesterday that it was 3.3 last week and today we got the results of yesterday's bilirubin: 2.2! It is great to know that it is below 3 and now we'll ask her onc when she can start full-strength Taxol treatment.

On the flip-side, Sarah's biopsy procedure today confirmed that breast cancer has spread to her uterus - and it apparently has invaded quite a bit. In order to limit the risk of hard-to-stop bleeding from the tumors, she needs to start a course of radiation to that area asap. We'll be seeing a radiation onc tomorrow to get that started.

Sarah is feeling a little more energetic thanks to her improved liver function and we continue to take things one day at a time.

22 Mar - More Challenges

Sarah has been feeling a bit better the past few days. Maybe the chemo has already provided some relief, but it's hard to say. However, there's now a new challenge to pile on top of the situation: the docs discovered additional tumors invading her uterus...

Although we don't think these are immediately life-threatening, they do add to the overall "tumor load" on her system and show that the cancer has spread more than we realized. She's going in to have these tumors biopsied this Wed and we'll know more about what this means after that. And we are hoping that the Taxol will also fight these new tumors.

Sarah really enjoyed a visit from her out-of-town friends Nicole and Shelby over the weekend! And of course also the visits from our Chicago-area friends as well. Her brother and family will be back to visit again at the end of this week.

Thanks again for all the love, prayer and support from all sides. It means more than you can know and helps us through each day.

19 Mar - Sarah Got Some Chemo

Long day yesterday... but we were able to get Sarah a dose of Taxol, although at the reduced dose. This means that her liver can not process a higher dose, but also the Taxol will stay in her bloodstream longer and possibly cause more damage to cancer cells, which would be good. The doc said he can give her this lower dose every three weeks as long as bilirubin stays under 7. So we will be watching the bilirubin trend very closely as Sarah gets her weekly blood tests. It's got to start drifting down for us to have a shot at turning this situation around.

So far, Sarah's feeling ok after the Taxol dose. More tired than usual but not much nausea. Her hair probably won't fall out for at least another week.

17 Mar - Bilirubin Not What We Hoped For

Sarah is still feeling pretty weak and not able to do much. Today Sarah got the results of her blood test and bilirubin was 5.3, well north of the 3.0 that we were hoping to get below. So I think our meeting with her oncologist tomorrow will be very important in understanding what we can do to fight progression. Our hope is that she can at least get a partial dose of Taxol to shrink some of the smaller tumors in her liver. That could open up some biliary ducts and improve the situation enough to increase the Taxol doses.

We're focusing on the hope that her situation can improve, but also very aware of the dangerous path she is on right now.

14 Mar - Headed Home

Sarah's being released from the hospital today - she's definitely feeling better than before so the ERCP has helped. Her blood test this morning still showed bilirubin hovering above 4 but we're hoping that was due to the fact that she got an infusion of blood yesterday and it is still possible it could drop below 3 later this week. The plan is still to start chemo on Thursday, at whatever dosage her liver allows - that's our most important next step for Sarah.

13 Mar - Promising Trend

Looks like the ERCP really helped Sarah's liver. Her first blood test this morning after yesterdays procedure showed a promising trend: bilirubin is down to 4.2 and the other liver function numbers have also improved. Sarah is feeling better this morning and she'll be able to come back home after receiving a unit of blood to boost up her counts and also a CT scan of her liver and surrounding abdominal area. Based on the ultrasound, we expect to see quite a few large tumors but at least we'll know what we're dealing with. If bilirubin gets down below 3 by her next blood test on Tuesday, then we hope to get Sarah started on Taxol this coming Thursday.

Still very worried but this is a good first step in the coming fight and has bought us some breathing room.

12 Mar - ERCP Went Well

Sarah's ERCP procedure went as well as we could have hoped today. Apparently she has an unusually narrow bile duct (go figure). The doc pulled her old stent out, which was on the small side to match her bile duct, and it was in fact plugged up. He was able to place a significantly wider stent so we're hoping that she'll have much better flow which translates into improved liver function levels and a bilirubin level below 3 (it's 8.6 right now which is super high - normal high limit is 1). Sarah's feeling fairly good and is just recovering from the narcotics. She's even hungry and was hoping to get in a good dinner but her doc ordered full liquid diet only.
So now we'll have to wait for a few days and see what her bilirubin level does - that will determine what we do next. The gastro doc that did her procedure did see indication of the liver tumors pressing on some of the biliary duct tree in the liver and he also saw some likely tumor tissue in the head of the pancreas where the bile duct passes through. We're hoping that Taxol treatments can beat those back and shrink them.

11 Mar - Big Day Tomorrow

Update on Sarah - we went to see her onc today. She felt really weak and could barely walk. Her blood "thinness" was off the charts high (ie thin) because the liver normally produces blood coagulants and apparently has not been doing that. So, we spent all day getting her re-hydrated and pumped up with blood plasma to get her blood back into the normal range - required in order to have the ERCP tomorrow to replace her stent and inspect the bile duct system. The plan will be to get her on chemo asap with as high a dose as her liver will tolerate. There's only one chemo drug that stresses the liver the least and has shown some effectiveness for Sarah and that's Taxol. On the bright side, Sarah perked up significantly after all the fluids and had a spring to her step on the way out of the clinic today.

So the big day is tomorrow (Friday) - the status of her bile duct and our hope to bring her Biliruben level down will determine how much chemo she can get in order to fight the advance of her liver tumors.

Today also marked a very tough event for us -- we sat the kids down and used the d-word ("die"). We both felt it was time to bring Ben and Sam fully into the loop on the fact that Mommy might not get better this time. They seemed shocked (there were tears) but also a little relieved that we finally shared this with them. With all the new anxiety in the air and the way Sarah looks/feels, I know they had a sense that something new was going on. It was also important for them to feel informed and be reassured that we were doing everything we could and that they would be cared for no matter what. And that it was ok to talk about their fears and share their feelings with us.

Thank you so much to everyone that has reached out to us through emails, visits and calls. Although I haven't been able to respond to everyone yet, the overwhelming show of concern has touched us both deeply and comforted us.

10 Mar - Alarm Bells

We received the results of Sarah's liver ultrasound and they were very alarming: multiple tumors with the largest at 6cm. That's huge - Sarah's onc told us a while ago that 6cm is around the size where tumors develop internal "pressure" and often stop responding to systemic treatment. So even if we can get Sarah back on treatment, that larger tumor will still likely be a problem.

This week and next will be dedicated to pushing Sarah's doctors for all options available to get the situation under control. Friday she'll get another ERCP where her gastro will see if he can clear a path in her bile duct system to drain the liver of toxins that are building up there. If he is successful then at least we have a chance to get her back on treatment.

Sigh... emotions are running high right now. I waver between a firm resolve to be hopeful and the realization that Sarah's life is in serious jeopardy. I'm returning from a trip and the people sitting next to me on the plane probably think I'm crazy (not that I care right now) because I periodically have tears in my eyes as I think about this. Hard to think about anything else...

9 March - Liver Tumors Are Back

Sarah took a turn for the over the past few weeks - instead of the "not feeling good" feeling getting better, it got worse. She's spending most of the day just laying on the couch and trying not to do much. Fatigue and lack of appetite are her primary symptoms but she just got updated test results and liver function tests are all worse plus her tumor markers have risen to a new high of just under 300 for CA27-29. And this morning her doc called with the abdominal ultrasound results and there are definitely tumors back in her liver. She's got an appointment with the gastroenterologist to see if there's some way he can drain her liver so her numbers improve. Otherwise she will not be able to take any chemo or other systemic drugs to control tumor growth.
We're in a pretty tight spot now all of a sudden. Basically her liver is gradually failing and we can't treat her unless the situation in her liver can be controlled somehow. We're going to be having some very important conversations with her doctors over the next two weeks.