22 Aug Back From Vacation

We just got back from a great summer vacation in Florida (Rosemary Beach near Destin). Even though Sarah's mobility was limited by her low energy and tiredness, with the help of a wheelchair and some extra travel time built-in we were able to have a great family vacation together as you can see! Sarah's brother Thomas as well as Kerry and baby Jane were with us, as well. We went out a few evenings for dinner on the town and during the day Sarah sat by the shore while Ben, Sam and I played in the waves - but Sam much preferred the swimming pool. In one of the pictures he's doing a great "nestea plunge" even though he has no idea what that expression comes from. :) We also went to the beach-side bar for ice-creams and beverages to enjoy the beautiful scenery. We are very thankful that we could work out a time between treatments and other commitments to get away for this trip.
After returning last Wednesday, Sarah did her Herceptin treatment on Thurs but did not get chemo - this time because of neuropathy symptoms. The concern is that if you push it too hard with the chemo then temporary neuropathy (numbness in hands & feet) can turn into permanent nerve damage. Strangely, Sarah's calcium level swung to the other extreme and is now low out of range, so she started taking calcium supplements. We're on track to get her chemo this Thursday, we think. Overall, Sarah is not feeling too good. She get's exhausted very easily which is frustrating for her, and it is hard to imagine that her condition will improve when we are not sure what specifically is causing it.
The boys are staying busy - Ben loves his new Karate classes and Sam is starting his guitar lessons next week - we just got him a guitar this weekend which he is very jazzed about! Another change is coming on the nanny front: Marie, who has been a great help to us over the Spring and Summer, was lucky to get a teaching job at a school in the area so we're searching for a new nanny. We've got some leads and are starting to interview some people next week. My parents will be staying with is for a while until someone new can start.

11 Aug - Update

Sarah has been feeling pretty bad so we had a very low key weekend this week and then I went on a quick business trip Monday and Tuesday. But, with a new dose of hydrocortizone and some pro-biotics, Sarah has actually perked up and had more energy over the past two days. We got a wheel chair for her so that we can take her out without her having to walk far, which can be quite a struggle. The doc wants her to recover some more of her strength so we're going to take one week off from chemo. She'll get herceptin and zometa tomorrow on her regular treatment day.

4 Aug - Catch Up

Lots of happenings at our house as you can see. One pic of Sam posing with his baseball gear (although the bat is too big for him). A pic of Sarah and also our friends Jeff and Jen last weekend during their visit. Jeff thought it would be cool to take a picture of me while I was taking a picture of him. Wonder how his pic turned out? And finally the pumpkin vine growing at our front door... we had a giant 140 pound pumpkin in our front yard last year that Sarah won at a Trader Joe's contest around Halloween. We figure one of the seeds must have accidentally landed in one of our flower beds and started growing a new vine - and now we want to see if it will produce giant pumpkins or just regular sized ones!
An update on Sarah: she hasn't been feeling very good over the past few days but it's hard for her to describe how she feels. Mostly it seems to be fatigue and a lack of energy. She got booster shots for her red and white blood cells last week, so that's probably part of it. The plan is for her to get chemo tomorrow and we hope that the continued chemo will provide systemic whole-body treatment that improves her health over time. There's nothing more we can do right now but carry on and see how she feels after a few more weeks of treatment. And the next scan and tumor marker test should also tell us if the Abraxane is helping her.

30 July - Update

Boy, this week flew by! Sarah's doing so so. She had a rough weekend with nausea and fatigue but that resolved itself starting Monday. She got chemo treatment yesterday and is doing ok so far. We got her tumor marker results yesterday and they are higher than before, but that is not unexpected since she had some significant gaps in treatment over the past 2 months. With more frequent treatment we hope they'll come back down. Calcium was 11.0 and is drifting up and down from week to week - it's high but probably tolerable as long as it doesn't start rising higher.
College friends Jeff and Jen (with Erica) are here visiting until tomorrow and TJ and Joyce plus their boys came up to join us for a dinner of fun and catching up. Ben and Sam are fine - they have enjoyed going to camp this summer but I think they are kind of looking forward to wrapping that up, plus we plan to head out for a short vacation after camp ends. They are really stoked about that and can't wait.

22 July Chemo Day

Sarah was well enough to get chemo today, although she seemed exhausted already before even getting treatment. Based on her blood test, it was probably low counts that were causing that - she got another blood cell booster shot this week (procrit).
Although Sarah is feeling a little better, she still sticks mostly to the indoors. Intermittent naps and facebook time. :)
The boys are doing well. The summer is flying by for them. Camp keeps them pretty busy along with activities that Marie takes them out to, and we've managed to have a good amount of play-dates as well.

18 July So So

Sarah didn't get chemo last Thursday due to having a cough and some congestion. It's probably the bug that's making its way around right now - seems like most families have at least one or two members sick. So, better safe than sorry - Sarah's doc gave her antibiotics and wants to make sure she gets better before doing treatment next week. Calcium might be creeping up again - was 11.2 last week. But Sarah's energy and appetite are still better than before, and we were able to go out for a few meals this weekend. She even went to our street's block party on Saturday. Still getting sleepy in the evenings and not driving, but feeling better overall.

14 July - Eating Better

Quick update on Sarah: she's a little less sleepy and she actually got hungry today and ate a decent amount of food. Those are good signs and we should be on track to get her another abraxane chemo treatment tomorrow.

10 July

The weekend is flying by with the weather being so nice here and the boys having several birthday parties and activities. Sarah has been nestled into the couch Friday and Saturday and has been dozing quite a bit during the day. She's not sure if it is just chemo side effects or whether it feels like it did in the hospital. I think we'll have to wait and see how this coming week goes - hopefully a steady improvement with another chemo treatment on Thursday. We think that her good feeling last Thursday was probably aided by the steroids she gets along with chemo. She's been doing pretty well keeping hydrated but eating is still a struggle. The idea is to eat smaller portions more frequently but Sarah is sleeping several hours at a time and waking up still feeling full, so it is easier said than done.
It's really hard seeing Sarah like this, and it is also tough not knowing if the chemo is working to improve her condition. But there's no choice but to wait and hope, so that's what we're doing. Thank you again for everyone's love, support and outreach to us - it means tons!

8 July - Chemo and Feeling Better

Here's a picture of me with the boys and Satchmo at the 4th of July parade near our house. Lots of candy loot!
Regarding Sarah, hard to say exactly why but she is feeling better now after getting treatment today. We'll take it! She did get IV fluids, some good anti-nausea meds and also some IV steroids... but if she stays hydrated and eating hopefully this is the beginning of an upward trend. In any case, the chemo should start right away to attack the tumor sites which should start improving Sarah's condition overall.

7 July - Sarah's Home!

Sarah perked up today - she is not as sleepy and is trying hard to eat more. We can't say exactly why she's doing better but it roughly lines up with her calcium level which is holding steady in normal range so far (9.7 today) after the series of calcitonin shots she got. Anyway, Sarah's oncologist figured that she can get her rest at home as easily as in the hospital so he sprung her out today. The key is keeping her hydrated and fed, but she has a strong incentive to keep up with it: not wanting to go back to the hospital right away! She's so relieved to be home where our family can be together and the bed is more comfortable. :)
Sarah will get chemo tomorrow, so we hope that can start to address the underlying cause of how she's been feeling. We'll be watching her calcium and other blood-test results from week to week.

6 July Update

Not much new to report today. Sarah's condition has not changed except that she doesn't seem to have significant nausea anymore, but still no appetite and eating very little. Her gastro doc is considering trying an appetite stimulant and we expect to talk to Sarah's oncologist tomorrow about the overall treatment plan and resuming chemo.

5 July - Update

I took the boys (and Satchmo) to our Arlington Heights 4th of July parade today before heading out to the hospital. They had a great time and got plenty of loot/candy - and Satchmo even got some dog biscuit samples.
Sarah's doing the same as she was yesterday - my sleeping beauty. Despite her calcium coming down to 9.8 which is back in normal range, she is very drowsy and is eating very little. She woke up suddenly at 4am last night and out of the blue got sick. The docs adjusted some of her IV drugs today but other than that we're waiting to see if she can recover her appetite before deciding on any next steps to address how we can keep her nourished. And I'm pushing the oncs here to get her a dose of chemo - no word on that yet due to holiday staffing.

4 July - Not Much Better

Well, Sarah's stay in the hospital is still very open ended at this point. That pain she got in the area of her liver might be a pull of her muscles in between the ribs. The docs are leaning that way because it isn't tender to direct pressure.
Her nausea is persisting and she's still just dozing through-out the day. Calcium came down a little bit to 10.7 but it is still high-out-of-range and it is being forced down with two different drugs, one of which is a shot every four hours. Since high calcium causes nausea and fatigue and all other tests have come up negative, we think that is the cause of how Sarah feels. She needs to be able to eat and keep down food before we can think of her coming home, and we're talking about giving her chemo while she's here in the hospital since that is the only thing we can do to treat the underlying cause of her hypercalcemia (high calcium).
Sarah isn't thinking too much about the whole situation because she is so drowsy. I'm most concerned that all of a sudden we seem to be entering a new stage in the advance of her cancer when I thought we were holding our ground with the chemo she was on. I'm still hopeful that Sarah can feel better and come home if we can get her calcium under control and get her some chemo to stun and shrink her tumors. We're doing everything we can and will have to be patient and positive.

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.

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.

25 Feb - Update on Sarah

Sarah has had a pretty rough time recently and is still struggling with fatigue, intermittent nausea and low appetite. She's hanging in there but is really tired of not "feeling right." This past weekend we think she caught a stomach bug and because she couldn't keep food or more importantly her tablets down, we had to take her in to the hospital for IV fluids + medicine. She felt better the next day and ended up spending just two nights in the hospital. Her liver function numbers are currently high out of spec and her tumor markers are the highest they have ever been, although we have good reason to believe they are coming back down due to the Tykerb treatments (we expect to get new numbers next week). And, Sarah is about half way through her pituitary radiation treatment, which is probably contributing to her fatigue.

The toughest thing for Sarah right now is the feeling that she might not ever "feel right" again since we really don't know exactly what's causing the general unwell feeling. We just learned today that her endocrine levels are ok - we had assumed the problem was there and that relief was in sight by adjusting the endocrine drug levels. Now we need to reconsider what to push for next. Maybe a liver and pancreas MRI. Sigh...

21 Feb - The Winter Campout

Sam was thrilled to go on this first Winter camp-out! You can see him in the green jacket with his legs in the air, goofing off after sledding down a hill. Ben also had a great time and he and I got a special "Haylushka" qualification after doing many tasks and a nature project. The weather was great - we spent almost all of our time outside of the cabins playing in the snow and running around the camp grounds. There was a great toboggan run and you can see Ben (orange hat) on a sled together with his friends zooming down the chute.

Who Dat Fever - Go Saints!

The Lopez family just before watching the Superbowl. Serious Who Dat fever gripped our living room when the Saints won! Sarah was so stoked - what a game and what an experience to see it really happen.

5 Feb

Sarah is more or less recovered from the surgery now but still often feels worn out and exhausted. She starts radiation next Monday which will go all weekdays for 3 weeks. For her systemic treatment, recent studies have shown Tykerb + Herceptin to be effective in halting and even reversing tumor growth, so her onc wants to try that for 4 weeks and then see whether it is working for Sarah. If not, then she'll start chemo at that point. The Tykerb seems to be tolerable at this point, so it's a relief that the side effects aren't too bad. That can still change if she has to take a higher dose, though.

So, for now we just have to press on and wait until next month to see if this treatment is effective or not. That'll also be the time to re-evaluate Sarah's pituitary function - March will be a busy month...

24 Jan Update

Sarah continues to feel better bit by bit. We met with her oncologist and radiation onc last week. The most likely plan is to start Sarah on Tykerb right away and also restart chemo (Xeloda) as soon as her nausea is not as much of an issue. Last week at the doc's office she had to stay to get fluids and extra steroids - she didn't realize that she was dehydrated and it really helped to get the fluids, plus her cortisol replacement steroid dose was also too low (probably was making her fatigue and headaches worse). This Thurs her onc will make the call on starting chemo and I think it's looking good. Her radiation onc wants to start a 3 week course of radiation to her pituitary on around 8 Feb. That'll be close to home so hopefully not too hard to manage and surprisingly he said it should not kill off her normal pituitary tissue, so there's a good chance that some pituitary function will remain.

Sarah is still pretty weak from the surgery ordeal but definitely improving, and now we're more anxious about the lymph node tumors that have been steadily growing - we need to turn that around and shrink them back down with systemic treatment as soon as possible.

20 Jan Update

Quick update on Sarah - she's continuing to feel better at home now. Headaches and nausea still there but they seem to be declining. Now we've got appointments with her onc and radiation onc this week and next week to work on the plans for treatment moving forward. She also still needs to go back to the ENT to get the rest of the packing removed from her nasal cavities. Yesterday only the splints were removed, which did allow her to breathe a bit more freely.

18 Jan - Sarah Home

Sarah felt well enough to leave the hospital today and is spending her first night home since the surgery! I think being home is making her feel even better. It is still very possible that she'll get a few headaches here, but we've got pain meds that should help with that. Tomorrow she'll go back to the ENT doc's office to get the splints and packing removed from her nose, which she can't wait to do (she'll be able to breathe again!). Then she'll go back on Coumadin by the end of the week and next week we'll consult with docs on when to start radiation as well as chemo (sigh). Out of the frying pan in to the fire - but she's ready to do whatever is necessary. Apparently it takes a while for the pituitary function to stabilize at new levels, so at some point in the next two weeks she'll also see the endocrinologist and determine if the hormone replacement levels need to be adjusted. But for now, we're just glad to have her back home.

17 Jan - Update

Sarah felt so much better after yesterday evening that she was almost discharged today, but then the headache and nausea came back around noon. She felt better again by the evening, so we're hoping she can come home tomorrow. As long as we can get strong enough pain med prescriptions and there's reason to believe that the headaches will be less and less frequent and intense, then I think she'll be comfortable leaving the hospital. Except for the headaches and nausea, Sarah seems to be healing up and recovering well from the surgery.

16 Jan - Splitting Headache

Well, Sarah spent most of the day with a splitting headache and nausea. Even pain meds didn't seem to control it and she just wanted to lay in bed without moving at all. It might be related to either over or under pressure of spinal fluid but we're not sure -- we constantly monitored for any suspicious fluid draining from her nose, but thankfully there was none. And, near the end of the day it suddenly started to ease up and Sarah was able to talk again and even eat some dinner. We're hoping this trend continues and she doesn't get another headache like that! Otherwise, she is doing better - we removed her "gauze mustache" this morning and her nose has hardly been bleeding.

15 Jan - A Bit Better

Sarah's doing better today and making steady progress on recovering. She was more lively today and was able to stay awake for some stretches of time. Her spinal drain was removed this afternoon so now she's not hooked up to anything. She started getting up and independently walking to the bathroom and back as well. Still not eating well yet but we're working on that. I went home last night and on my way back today I brought her mail and a cute stuffed animal that Ben sent along for her. :) Thank you for all the love and encouragement headed our way!

14 Jan Sarah out of ICU

Sarah was doing well enough today to get moved out of Intensive Care into a regular hospital room. Although she is still constantly drowsy (which according to the docs is normal), she is not "hooked up" to anything except her epidural drain. She can get up and go to the bathroom, drink and eat - although she's not eating much yet. The biggest challenge for her now in the near term is waiting out the discomfort of the nose incisions as they heal. She says her head feels "heavy" and she has trouble finding a comfortable position in the hospital bed. Still to come in the hospital is removing the drain and also removing the splits/plugs in her nose. I think it's still going to be a while before she can go home again.

13 Jan - Update

Spending 2nd night with Sarah in the ICU. She's doing very well according to the docs. However, she's still really worn out from the surgery and is spending most of her time sleeping. The staff got her to get out of bed and sit in her chair for a while (which she was not excited about at all). That is supposed to keep fluid from building up in your lungs and keep you from getting bed sores. She managed it fine but it made her throw up once - apparently that also is not uncommon for the 1st time out of bed after surgery like this.

She's managing well by taking mild pain meds on and off, but we're keeping up the anti-nausea drugs to keep her stomach settled as best we can. After a good night's rest, I'm hoping she continues the upward trend tomorrow.

12 Jan - Surgery Done

Posting from the hospital - Sarah came out of her pituitary surgery this morning and all went fine. She's still woozy but hanging in there, and we're waiting for her to be transferred to a hospital room (ICU for a day or two is standard). Although the surgeon was able to remove all of the tumor, the pathology did show that it was a met, which is scary. But, it has been there for over two years and seems to have grown & shrunk rather than growing aggressively and spreading. It is our hope that due to that and with the help of some follow-up radiation treatment to the pituitary it will hopefully not return. The next open question is how Sarah's pituitary will be functioning after the surgery. The next day or two should show that, and the surgeon does not think that this surgery will degrade pituitary function because of how well it went. It's even possible that some function will return as pressure on the pituitary is relieved.

I'm so thankful that this went as well as it did - thank you to all for the prayers and well-wishes! And a shout-out to my parents and our friends who always help take care of Ben and Sam in times like this!

I know Sarah will be very relieved to put this behind her once she has recovered. And I know she wants to press-on and start chemo, despite the side effects that come with it, so that she can fight back the lymph node tumors that have been gaining ground at her neck and abdomen. The Faslodex treatment she's been doing since taking a break from chemo just wasn't effective and we need to get back to something that is more likely to shrink those tumors.

3 Jan - Happy New Year!

Happy New Year to everyone! We celebrated Christmas here in Chicago with just us - intimate family setting. Sarah had quite a few doctor's appointments but we managed to make it out on a 5 day trip to New Orleans to visit Sarah's family over New Years Eve. Everyone had a great time on the trip and now we're back in the frosty tundra of Chicago and gearing up for Sarah's surgery on 12 Jan. We did go see the breast cancer specialist at University of Chicago last week before heading out, but the she did not have any significantly different new recommendations or insights into Sarah's cancer and treatment plans. Based on the discussion, we might talk to Sarah's current onc at trying Tykerb.
Well, first we need to get through this surgery and then move back in to systemic treatment mode. One step at a time. In the mean time Sarah's comfortable and has her appetite back, which we're thankful for.

14 Dec - CAT Results

Sarah got her CAT scan and tumor marker results back today. There were no big surprises, but unfortunately they did confirm that she'll most likely need to go back on chemotherapy after the pituitary surgery in January. The lymph nodes at the left side of her neck as well as some abdominal ones are definitely enlarged with tumors and there seems to be some suspicious areas in her actual Pancreas which need to be further evaluated. Her CEA and CA27.29 markers are up to 50 and 177 respectively -- significantly up from the last reading, which is kind of what we expected given that she can feel the nodes on her neck getting slowly larger.
So the plan is to consult a breast cancer specialist at University of Chicago (recommended by her onc), get the pituitary surgery and then start back on systemic treatment right away. Somewhere in there she'll also get a pancreatic duct ultrasound and biopsy to get more information about what is going on there.
Sarah still feels pretty good overall and is back to eating what she wants, but the anxiety over the surgery and what's next after that is starting to loom for both of us. Is the pituitary mass a met or a benign growth? Is there a met in her pancreas? Can chemo shrink her lymph nodes back down? We're staring at a lot of question marks as we think about the coming new year... and the answers may only cause even more worry. At times like this we're especially thankful for all the well wishes, prayers and help from friends and family - thank you and keep the prayers coming! Strength, peace, hope.

5 Dec - Plans Firming Up

We saw Sarah's neurosurgeon as well as her oncologist this week and both agree that it's time to do the surgery to remove the pituitary mass. So, we're working on scheduling the brain surgery for Sarah. It looks like it will likely be in early January since that is when an OR will be available and two doctors' schedules overlap (an ENT and a neurosurgeon do this surgery together since an endoscope is used to access the pituitary via the nasal cavity). After this, we'll know through biopsy what the mass really is, but we'll also have to see what pituitary function remains (or is restored).
Sarah is still feeling quite a bit better now that her body chemistry is closer to normal with the help of her new daily endo tablets. She's eating food she likes and also more energetic overall.

29 Nov - Sarah Back Home

Sarah was able to come home from the hospital last Friday. With the help of several pills, her appetite is now back to normal and she's feeling much better. Now we just need to work on the longer term plan - and we've got some doc appts this coming week that will help with that.

Thank you so much to everyone that helped us while Sarah was in the hospital! She's so relieved to be back home now, but it was also a comfort to know that the boys were well taken care of while she was away from home.

25 Nov - Sarah's on Soft Food Diet

OK, finally made it back from Germany yesterday after being stuck in Hamburg for a full day due to our plane having a mechanical issue! I went over to see Sarah yesterday evening and she's doing much better - on soft food diet and doing well, and also being weaned off TPN. The last thing she needs to do before "making parole" from the hospital is for the endo doc to get her switched onto the pill form of Cortisol and Thyroid-related supplement meds. Looks certain now that her pituitary function is impaired and she needs meds to correct her levels of cortisol and chemicals produced by the thyroid. The brain MRI showed that her pituitary mass (same one that's been there for over two years) is now larger and pushing on the remaining pituitary and also there are two smaller new masses. We're told that having multiple adenomas very unusual and it would support the theory that these are actually breast cancer mets not adenomas, but they have not acted like mets with the slow growth and periodic shrinking... so the docs are still unable to diagnose them. Sarah and I are both assuming that it's time to consider moving ahead with the surgery to remove these masses. Still need to discuss with the surgeon and her onc as well. Probably Sarah will have to go on a whole host of supplement drugs to replace lost pituitary function.
Still a lot of unknowns, but in the near term Sarah is relieved to be able to eat again and is looking forward to coming back home in a few days!

23 Nov - Update

Sarah's feeling a bit better today. Either the Cortisol booster shots or the Reglan (I think more likely the cortisol) has improved her tolerance for food and she's moved up from clear liquid diet to regular liquid diet. Still on TPN, though. Did more tests for the Thyroid so the endo doc knows exactly how to get Sarah's numbers back where they need to be. On the cause side, it seems there are several "spots" at her pituitary but there's not a consensus on whether they are bc mets and whether they are operable. Sarah plans to consult with her primary onc and the brain surgeon she's been seeing to determine what the right course of action is. We're hoping either that it is operable or that she'll be fine without an operation. If she will not be fine then radio-surgery or radiation could be the way forward. Lots of unknowns at this point, but now that the docs have a better idea of what's wrong and she is getting the endocronology treatments she is finally starting to feel better.

21 Nov - Update

Sarah's now on the "TPN" IV nutrients. She's also getting Cortisol replacement shots and that line if investigation continues. She got a brain MRI to look at her pituitary but we don't have the results yet, and she is should be seeing an endocrinologist about adrenal gland issues by tomorrow. Now the two main things are seeing if she feels better with the Cortisol shots and exploring the symptoms and root cause of low cortisol. She seems to be feeling less nausea and continues to try to eat the liquid diet she's getting.

20 Nov - Sarah Hospital Update

Sarah says she felt a little bit less nausea on Friday but is still not really able to eat. She keeps trying with the liquid diet - hopefully she'll recover her appetite gradually like she did a few weeks ago. Although the doctors still do not know what the cause is, her onc noticed that one number was off: low Cortisol, which is a natural steroid produced by the body (controlled by pituitary). Can cause nausea if not present. So, Sarah will get a brain MRI on Sat morning to see if this has anything to do with the pituitary adenoma she has. No orders for a needle biopsy yet. Sarah is not (yet?) on "TPN" which is the IV nutrients - just saline with dextrose and attempts to eat.

19 Nov - Update

Well, not much new to report today. I talked to Sarah this morning and her brother Thomas as well as Rev. M.E. Eccles from our church visited her today. She's able to talk and visit with people but she's definitely got nausea and a strong "not well" feeling and is stuck in the hospital until we can figure out why she can't eat. The docs don't think this is straightforward pancreatitis because her Lipase numbers are not elevated but the CT does show swelling of the pancreas. There's talk of a biopsy, but bc mets to the pancreas are very rare. We're going to have to see what further tests reveal before we know what the next steps are or how this can be treated. In the mean time she's not able to eat even the clear liquid diet that she's supposed to be on...

18 Nov - Pancreatitis Again?!

Well, Sarah was just admitted to the hospital again for the same symptoms she had before - unable to eat anything due to nausea + feeling of fatigue. The strange thing is that her Lipase numbers are not elevated this time. Sarah is wondering if this was triggered by the Faslodex shot she just got but the docs don't think that should have anything to do with her pancreas. We are hoping that with more tests we can find the root cause of the issue - Sarah's really ready to feel "ok" again and frustrated that this keeps coming back. In the near term it looks like she'll likely need to be fed with intravenous nutrients like last time, but that hasn't been confirmed yet - we'll know later today, I think.
To compound the problem, I'm out of town on a trip with Sam to visit my grandmother in Germany! Sarah and I have been texting and talking over the phone quite a bit throughout the day. Thank you to Wendy for taking Sarah in to the doc and Elizabeth and Thomas for coming up from New Orleans to help for a while! I know Sarah doesn't want me to have to come back early from this trip because my grandmother isn't doing to well either, but unless this is a similar pancreatitis recovery to the one she did two weeks ago I plan to cut the trip short and get back as quickly as possible. More to follow over the next few days...

15 Nov - Sort Of Better

Sarah's doing pretty well, but there is still something lingering that hasn't quite settled out. Sarah has trouble describing it -- she says it's not nausea, just a general feeling of "not well." She's up and about, though. Tomorrow, she'll see be asking her onc about it when she goes in for the next Faslodex and Zometa treatment.
We're not really sure what to make if this "not wellness." Sarah's frustrated with it because she just wants to feel ok again after this long period of issues and we don't really know how to attack/treat this because we don't know what it is.
We celebrated Ben's 9th birthday this week and he had a great day. Was just a family celebration day with a friends party to follow in around 2 weeks. Probably a laser tag party. Among other things, he got several webkins and a wii game - two things that he really loves. :) He also played his first basketball game of the fall season and was jazzed about that.
Sam is loving kindergarten and also his swimming class. He even got me to take him to the pool this weekend just for fun and we stayed for 2 hours!

10 Nov - Update on Sarah

Sarah's feeling better now and able to eat most foods. Her energy is definitely up, as well, although not fully up to par yet. My parents went back to San Antonio so we're on our own again. It was a huge help having them here, especially while Sarah was in the hospital and also during last week as she recovered.

5 Nov Update

Sarah's starting to feel better now. The nausea seems to be clearing up and she's getting some energy back as well. Still not too adventurous with food yet, but making progress.

We've had quite a week for health issues! In addition to Sarah's recovery, Ben and Sam are both recovering from strep and Ben got some kind of cold with fever on top of that! Doesn't look like H1N1 but it kept him out of school for three days with a fever. He didn't seem to mind too much since his symptoms were mild and he got to sit in his room all day watching movies on his portable DVD player! The isolation strategy seems to have payed off -- his fever broke this morning and no one else in the family seems to be coming down with the same thing. Man! Can hardly remember what it is like to have everyone in the family free of sniffly noses and coughs. On the flip side, Ben is enjoying basketball and he is close to accomplishing a special qualification in Indian Guides called "Hay-lush-ka." Sam likes his swimming classes and enjoyed soccer which is now over. He has really caught on to reading, too - now he's checking books out from the library and actually reading them. :)

2 Nov - Sarah's Home

Sarah's back home - just in time to watch the Saints win another game. :) I think she's really looking forward to sleeping in her own bed again - and not being woken up for a blood pressure reading! She's still a bit weak from the whole ordeal but we hope after a few meals she'll build up some strength. The follow-up doctor appts this week will hopefully confirm that she continues towards a full recovery. She's starting it slow with getting back to a full regular diet. Soup tonight, which seems to have worked ok.

31 Oct - Fall Pics

Sarah won a Trader Joe's contest to guess the weight of a giant pumpkin, so we now have a 160 lbs pumpkin in our front yard! Sam's much smaller one from his pumpkin patch visit is on top for size comparison! It is really amazing. The other pic is just a general Fall pic. The colors are really popping out this year and Fall is looking great here.

31 Oct - Happy Halloween!

Sam ended up being Megatron, a Transformer, and Ben was a vampire. Sam loved his costume and Ben loved how his looked, but ended up not liking the feeling of having face paint on and said that the fake blood felt weird. Anyway, the trick-or-treating went great and fun was had by all! Lots of candy... I had to sample a few (just to make sure they were ok to eat). :)
Sarah's doing better. At 3pm today when I left the hosp to come back for trick-or-treating she'd eaten low-in-fiber solid food and tolerated it well. Bilrubin was also down from 7.3 to 3.8 which is a great drop, more even than we expected. The boys and I will be going to see her tomorrow morning.

30 Oct - Another Update

Sarah felt better this afternoon and seemed to be bouncing back from the ERCP very well. She even took a stab at a liquid diet of broth, jello and fruit slushy. Her energy level was also pretty good. Now we're waiting to see what her bilirubin number will be tomorrow. Surprisingly, little to no nausea today despite the anesthesia which has been tough on her stomach in the past.

30 Oct - ERCP Went Fine

Sarah just came out of her ERCP and it went smoothly. The doc placed a new temporary stent in her lower bile duct where pancreas swelling was probably restricting some flow. We're hoping to see her bilirubin numbers improve significantly by tomorrow. Expecting her to be in the hosp through the weekend until she's eating again.

29 Oct Update

Well, Sarah's nausea came back and persisted... so the plan is now to do another ERCP so the doc can go into the bile duct with a camera and verify no strictures - also most likely to place a stent again. It's a bit of a mystery what is going on at this point. All numbers are heading back down towards the normal range (ALT, AST, Lipase) except Bilirubin which continues to climb. Sarah's skin and eyes have a noticeable yellow tint to them at this point. And then there's the nausea which was the problem to begin with -- she needs relief from the nausea so she can return to eating a healthy diet before she can leave the hospital.

So, ERCP and stent and hopefully enough add'l info to understand what's causing the problem. I'll post after the procedure to report how it went. Will be spending all day Friday and probably overnight at the hospital with Sarah.

28 Oct Update on Sarah

Today Sarah feels good again, just like yesterday. She says her nausea has gone and what remains is likely hunger (hard to tell). Also, she seems to have more energy and is in good spirits. After two days of being fed by her IV, we're hopeful that she can try real food again tomorrow. Her Lipase numbers continue to drop (good). Rising Billiruben (usually not good) is giving her a bit of yellow skin, but the docs say that is normal and not a cause for concern. So, after we get the results of a special MRI being done on her bile duct and pancreas this afternoon, we hope that she'll be on the path to recovery. Thank you to all who have called, emailed, sent flowers and helped with the kids this week!

26 Oct - Update on Sarah

Quick update on Sarah. She's hangin' in there, although not really feeling better yet. The docs say the best way to treat the pancreatitis is to let no food at all enter the stomach for a few days, so that's what we're doing. She just started getting fed via IV tonight and we're hoping she starts to feel better tomorrow. Sarah's passing her hospital days with books, magazines, books on tape, , tv visits from friends and hubby, and also her new iPhone. :) It's really a waiting game at this point. She's still feeling some nausea, but without eating food it seems manageable, even though it definitely causes constant discomfort.

Figured It Out

The doctors figured out what is causing Sarah's nausea: she has an enflamed Pancreas. The CT didn't give any reason to believe that it is cancer-related. Probably just something related to the bile duct stent.
The plan is stop all food intake (but she gets nutrients via IV) until the pancreas settles down and then she'll do another ERCP procedure so they can make sure her pancreatic duct is cleared to allow flow. That'll probably be around Wednesday, so Sarah's got several more days in the hospital than we thought. But, we're both very relieved that we have a diagnosis and that it is both unrelated to cancer and that it is solveable.

Sarah In Hospital

Sarah's prolonged nausea caught up with her this Friday. Probably due to not eating and drinking enough, she felt really weak and I took her in to see the doc. Her doc had us admit her to the hospital right away to get some fluids and sugars into her system and she has perked up today. But, we still need to figure out what is causing the nausea so she can eat again, so we'll be here at least for a few days and there is likely another bile duct stent in her near future. Had a bowel xray yesterday (neg) and liver CT will happen this afternoon since Sarah's liver function numbers are back up. Sarah is holding up fine now and is mostly just frustrated that we don't know what the cause is so she can fight/treat it. No internet in her room so she'll be off email for a few days.

15 Oct - Stent Removal Went Well

Sarah had her bile duct stent removed today and everything went very smoothly. We were relieved that the duct was no longer pinched off so no new stent needed to be placed, and she didn't wake up during the procedure this time either! The assumption is that the enlarged lymph nodes outside the duct have responded to chemo and shrunk back. We were on our way back home at 1pm so it was a quick-turn process. Sarah's sleeping heavily this evening as she recovers from the general anesthesia, but she should be feeling good tomorrow.
Also, we learned from her oncologist that her hormone levels support a switch from chemo to hormonal treatment, so instead of getting a final Taxotere treatment next Monday, she'll switch to Faslodex along with the usual Herceptin. This will present a welcome break from the taxing side-effects of prolonged chemotherapy and we're hoping her cancer respond with declining tumor markers - that's what we'll be watching for in the 2 months to come.

10 Oct - Update

The latest set of tumor markers were just a little under the previous set of numbers, so although the CAT scan showed no significant activity anywhere, we know there's some systemic tumor activity and Sarah needs to continue with her treatment. Since it is not recommended to have more than six rounds of the heavy 3-week doses of Taxotere, Sarah will get one more after next week and then switch to either Xeloda or something else. One option may be a new approach of alternating chemo and hormonal treatment. We're going to discuss it with her onc in two weeks after he attends a breast cancer conference where data supporting the approach will be presented.
But, before Sarah's next and last round of Taxotere, she's scheduled to finally get that stent removed from her bile duct next Thursday. We're not sure if another will be placed, or if the duct will no longer be pinched off by the lymph node tumor that was causing the problem before, in which case of course she won't need another one placed. We're hoping for the latter, and also hoping that she doesn't wake up again during the procedure! Sarah dreads that more than anything else about getting the stent procedure. Other than that, it's a day-surgery type setup where you can go home later the same afternoon.