30 Dec - Donations In Honor Of Sarah

For those who feel moved to do so, donations in honor of Sarah can be sent to the Susan G. Komen 3-day Walk for the Cure site below. Nicole Smith and I will do the 60 mile 3-day walk as a team this year in Chicago - we're calling the team "Sixty For Sarah." This is exactly the type of breast cancer research funding that Sarah would want us to support, and I know many of our friends and family have joined us in doing so in past years. Thank you!

http://www.the3day.org/goto/sixtyforsarah

28 Dec - Book of Memories

The boys and I are holding up ok, but it feels very strange for me to be following the same routines that I did before last Tuesday. Taking Sam to guitar lessons, taking Ben to karate, going shopping. My mind says, "Yes, that's normal," but my heart screams, "No, this isn't right! Nothing is! She's gone and that makes everything different!" I know I just need to keep taking it day by day and giving it time - and staying focused on the boys will help, too. The little things that come unexpected and remind me of Sarah are the hardest. Yesterday it was her favorite slippers that she wore right up until the last day -- now laying in a spare room with no more feet to fill them. Today it was "going out to dinner" and the realization that I won't be asking Sarah "Thai or Mexican?" anymore. I can ask the boys, but they'll just answer "which is more likely to have grilled cheese sandwiches?" Sigh... precious time. I miss you, Sarah!

Sarah's Uncle Bill asked me to post this request for emails with "Sarah stories:"

Dear Friends of Sarah,
I am Sarah’s uncle, the younger brother of her mother Jane. I am trying to help Alan and the boys by putting together a book of memories from you that they can look at in future years. Most of my memories are of a young girl growing up here in New Orleans and would very much like to have your recollections as a student, young adult, mother & friend.
What I have in mind is maybe a little bit different from a funeral tribute – a real-world memory or anecdote about Sarah which will collectively paint a good portrait for Ben & Sam 5-20 years down the road. In fact, while I’m asking you now, you may want to draft something and put it aside for a few days and then look at it again later – I almost always have additional thoughts after a first draft. Any digital photos would be great.
Ideally send it as a Word attachment, but any format will do. Please put Sarah in the subject line of your e-mail so I will be sure to open it.

Please send whatever you think appropriate and thanks in advance,

Bill Settoon
bsettoon@bellsouth.net

25 Dec - Christmas Wishes

I wish I didn't have to label the presents only "from Daddy."

I wish I could smile and thank her for the gift she got me.

I wish she could have seen the excitement on the kids' faces this morning.

I wish she were here.

Ben and Sam got us up at 6:30am and were twitching with excitement to open their presents. For a while there was just wrapping paper flying towards me and then I saw Sam's mouth form a perfect "O" when he saw that ripstick scooter that Sarah got for him. She knew it would score high on the "wow factor" scale and I just wish she could have seen Sam's expression. The boys had fun and they helped me find some light times as I played with them, but overall it was a tough day and I'm glad it's over.

It was great to have my parents and Elizabeth to keep me company, which made it easier. We all pitched in to make a nice Christmas dinner and I even managed to cook a dish - one that was a favorite of Sarah's.

24 Dec - Funeral on 31 Dec, 11am

I'm still stunned by how fast Sarah declined and it's hard to accept that I now have to live in a world that doesn't have her in it. Hitting me in waves when little things remind me. Most of the time I'm ok and keeping busy with everyday stuff and xmas preps, and then suddenly I'll think of something and get that lump in my throat and the feeling wells up inside me. I know I have the strength bear this, but I think it's going to be a long and hard road - and I think it'll get worse before it gets better. Thank you for all the love, support, calls and blog comments - all are a comfort to me and will help me find a way to focus on Ben and Sam as we heal as a family.

Thomas and I are collecting pics of Sarah for the memorial service - here's a preview of two of mine. Missing that smile terribly right now. :(

The memorial service will be at 11am on 31 Dec at St. Simon's Episcopal Church followed by a lunch reception in the parish hall. Sarah's favorite color was blue - the boys and I will be wearing blue and I invite anyone attending to do the same if possible/practical.

21 Dec - A Tender Goodbye

Sarah was relieved from her suffering tonight at 9:45. She slipped away peacefully surrounded by love. Thomas was with her until just before the end and Elizabeth, my parents and I were with her as she passed. I'm so grateful that I was able to be at her side, whispering into her ear and holding her as she let go. She's our angel now...

Sarah wanted us to remember her as she was before the diagnosis, so I've posted a picture of her and I in Nov 2005 and a picture of her the Christmas before, which felt right given the season. I think she'll find a way to be with us for Christmas this year in whatever way she can. I can still feel her presence. That's all for now - not sure it's really sunk in yet.

20 Dec

Thank you so much for the amazing outpouring of support through comments on the blog. It has been a source of comfort to feel like we are far from alone in this. Sarah's pain subsided last night and I was able to stop giving her morphine. She's stopped drinking fluids and has spent today in a deep slumber. She seems comfortable and at peace now and Thomas, Elizabeth and/or I have been at her bedside continuously. I'm very thankful that she doesn't need to be medicated for pain anymore - she has opened her eyes a few times briefly and was even able to lay her hand on Ben's when he reached out and said good-night to her. The hospice nurses say it looks like she'll slip away very soon - in the next few days.

19 Dec

Couldn't come up with a title to this post... it was too hard to put into words. As if Sarah was just holding on until she could enter hospice and let go, so took a turn for the worse today. She had a sharp continuous pain in her abdomen this morning so we had to start giving her morphine. Throughout the day we had to up the dose a few times with the doc's approval just to try to get ahead of the pain and she's been sleeping all day. She occasionally opens her eyes for a moment and can just barely respond to questions. She's stopped eating and has just had a little bit to drink today. Nurses say it looks like advanced liver shutdown and that she may drift in to a coma soon. Because of that and because we're having to give her enough pain meds that she can't stay awake, Ben, Sam and I each spent some time talking to her and saying goodbye in case we don't get another chance. It was very hard for me to do... this all seems to all be moving much too fast, but my only comfort is that it might make it easier for Sarah. I'm at her bedside now and hoping she wakes up a bit a few more times.

18 Dec - Gifts and Decision

Sigh. Today was another very tough and emotional day for us. Sarah told me today that she's decided she wants to stop all remaining treatments (Herceptin, Zometa and Coumadin) and enter at-home hospice. Although this will make the end come faster, she's already getting weaker and more uncomfortable by the day. It's hard to imagine that she could even make the trip over to the treatment center now. It was very hard for me to see us give this final bit of ground, but as we held hands and looked into each other's eyes, I could tell that my tough girl Sarah was ready. She's fought so hard and endured so much over the years and now I have to be tough too and find the strength to let her go.

This Christmas, as we all worry about what gifts to buy and wrap, I'm finding that my heart just isn't in it. All I can think about is the great gift that Sarah has given me and our boys - her undying (!) love and devotion to our family. Her gift of life to Ben and Sam and her dedication to being the best mom she could be for them, even in the recent difficult years. All other gifts just seem to pale in comparison.

We got a more comfortable hospital bed and other things for her tonight from the hospice center. We also managed to somehow make it through recording a video for the boys without breaking down and crying too much, and I helped her finish a letter each to Ben and Sam for safe-keeping. While the kids are excited about the gifts under the tree (as they should be!), these are the gifts I'll be most thankful for this Christmas.

18 Dec - Quick Update

Sarah started the day off pretty good on Friday but I think we wore her out more than we thought with the flow of visitors - by the end of the day she felt so weak that she was barely able to walk without help. She wasn't able to eat much but her reflux didn't seem as bad. Thomas went back home today and plans to return right after Christmas. Elizabeth arrived and will be with us until my parents come next week.

The boys and I are holding up ok. I'm just focused on helping Sarah and making her comfortable while finding time to just sit with her. She and I are touched by the origami cranes that many in the community are making for us! Here's a picture of them at our front door.

17 Dec Update

Not much new to report today. Ben and Sam and a fun day at school since they spent all day visiting each other's classrooms for a multicultural fair they've been preparing for. Ben had karate and got in some good punches... The boys are definitely affected, but they seem to be holding up well.

Sarah did ok but is really tired and very weak. We had a few visitors and she got some naps in as well. Thomas and I had her open her Christmas present early - an iPad and stand-up case so that she can stay connected with friends and family while resting in bed.

Some of our local friends have been asking if it's ok to visit or if we'd rather have more private time together. Sarah likes to have visits so no worries, as long as we keep from tiring her out - so shorter visits are best and I try to space them out a bit so she can rest in between. She and I are also finding opportunities to spend time together throughout the day.

We are also very touched by the origami cranes that have started appearing at our front door. Thank you for that visual reminder of how many people in our community care about us!

15 Dec - A Different Hope

Today was a tough and very emotional day. After we arrived at the Cancer Center and got Sarah settled, the doctor came in to tell us that he did not think we should move forward with the drain procedure. After finally being able to review the CT scan of her liver in detail, and after consulting a few other doctors, he said that the procedure would not help lower Sarah's bilirubin and would instead cause considerable discomfort because he'd have to go in through the rib cage vs. under it as he'd expected. It seems the tumors in Sarah's liver have caused too much damage and drainage of bile from healthy liver cells was not ultimately the problem anyway.

For all the years of Sarah's cancer, our life has been centered around hope - hope for a cure, for the next chemo to work better, for another procedure to improve her situation. There was always a set of options and possibilities. Now, all of a sudden, we're out of next things. With nothing around the corner to pin our hopes on and no treatment possible anymore, we have to accept that the course is set and Sarah's life will end soon.

Now Sarah and I are focused on a different hope - that we can make her as comfortable as possible, and that we can open our hearts and stay close as a family, sharing as much love and compassion for each other as we can so that it takes at least a little bit of sting out of the sadness that we all feel. That's easier said than done and it's hard for me just writing it right now, but we will do our best. So that we can face this together, we brought the boys fully in the loop today and they are starting to digest it all. I asked Sarah today whether I could do anything special for her. She said, "Just be with me." - and that's exactly what I intend to do. For all who are praying for us, please ask for strength, comfort and peace.

14 Dec - Going For The Drain Procedure

We talked to all of our doctors and are on track to have Sarah get the liver drain procedure done tomorrow. It'll be an all-day affair as she needs to get a long infusion of plasma in the morning to thicken up her blood and they want to keep her for a 23hr observation after the procedure (we've stated her desire not to get "stuck" in the hospital)

Sarah had a pretty good day and was able to eat a little here and there. She snuck in a few naps and went to bed after dinner. Her brother Thomas arrived tonight to visit for a few days and he'll be with us at the hospital tomorrow. We're relieved that we can attempt this drain procedure since Sarah is looking more yellow every day. We know a drain won't take away the tumors but it could give us some breathing room and lower the more immediate risks that come with a blocked liver.

13 Dec

Thank you for all the comments with encouragements and prayers! We'll have to wait another day to see whether the external liver drain is an option for Sarah. We talked to both her onc and to the doc that did her stent replacement today, but right now it all rests with an interventional radiologist that we know and trust. He has to physically get the CT scan images which caused a delay. We're waiting to hear his assessment on whether he thinks a drain can help. We also learned today that Sarah's bilirubin result from last Thurs was over 13, so it is continuing to rise.

Based on that it looks like her liver is not recovering function, and I can see that taking its toll on her a little more each day.

Sleepy Sarah had an ok day today. Periods of wakefulness for some short visits mixed with resting in bed. Eating has become a chore for her since it seems to give her reflux that is uncomfortable, but she does what she can. Eggs have become a favorite due to the high protein and small portion size.

Signing out for tonight & I'll post again tomorrow with an update.

12 Dec Update

Well, we've had an eventful weekend. Sarah's had some good and some tough periods. Her yellow color isn't improving and I can tell she's struggling with a high general level of fatigue and unwell feeling. I took Sam to his two basketball games and one birthday party this weekend, and we also decorated our Christmas tree together as a family on Saturday. The boys and I unpacked the ornaments and Sarah helped select the ones that we wanted on the tree this year. On Sunday we spent quite a bit of time buying a bunk bed for the boys and assembling it in Ben's upstairs room. That frees up Sam's downstairs room for Sarah to sleep in since the stairs have been getting pretty daunting for her to climb, especially in the evenings when she's already tired. It'll take some getting used to for Ben and Sam, but night #1 worked out ok even if Sam did take a long time to fall asleep.

I think Sarah's bilirubin is probably still sky high and that means her liver is likely not doing what it is supposed to, so I'm very eager to discuss with her onc what our plan is for this week. I'll be pushing for speed - very much not liking the trend and the pace of how she's feeling.

Ben seems to be holding up well, although he's definitely affected and "gets" where we are. He was so excited about the "cool" new bunkbed but then said he was sad at the same time because he realized why it was necessary for us to get it.

Well, enough for now - I'll post when we have some more news.

9 Dec - Difficult News

Sigh... the results that Sarah received this week have turned Advent bitter-sweet for us. Despite the successful stent replacement, Sarah's bilirubin did not go down and it fact it seems to be climbing. We learned earlier this week that her tumor markers are above 500, the highest they have ever been since the beginning, and a CT scan done yesterday shows significantly larger tumors in her liver and pancreas - probably have been growing slowly for some time due to intermittent chemo. It seems that her liver is not functioning properly due to the tumors and she can not tolerate any chemo, which is the only thing that could make it better. So, we may be left with focusing on Sarah's comfort and preparing together for the end. Her onc is helping us look at any and every option. One thing we'll likely try next week is to see if a surgically implanted external drain tube from the liver can bring her bilirubin down far enough to receive chemo. It feels like a long shot, but it's a lifeline that offers some hope.

Sarah and I are facing this together and drawing strength from each other, as we have all along the way so far. We also continue to be very open with Ben. It's a lot for a 10 year old to handle, but we felt that he needed to know that time may be short and very precious. What's important is that we stay connected to the present - today we have each other, today we can give hugs and share smiles and love. Sometimes easier said than done... but it's where I come back to after a wave of worry passes.

Thank you to everyone that continues to reach out to Sarah with calls and support. It means a lot to both of us! It's very comforting to have a circle of friends and family that cares so much. I'll post updates on how next week is going.

2 Dec - Update

Well, it sure got cold in Chicago! We're down in the mid 20's so it really feels like winter now.
As expected, Sarah didn't get chemo today - just the usual Herceptin. She's still yellow and has had a tough time recovering from this procedure for some reason. First she had some nausea and now she's very tired and fatigued. We hope to see her regain her normal coloring this weekend and maybe some spring in her step as well. Blood test on Monday to see if bilirubin is low enough to allow chemo next Thurs.

30 Nov - Stent Replacement Went Well

Sarah had her bile duct stent replaced today and it went well. Her bilirubin was at 7.1 before the procedure (normal is below 1 and must be below 3 to get chemo). The doc said the old stent was definitely 100% clogged and he was able to put a new permanent metal stent in that should not clog and is about 3 times as wide. Sarah came through it fine although she's dealing with some post-anesthesia nausea tonight. Over the next few days her yellow coloring should fade away and by next week we hope her bilirubin will be back in range so she can restart her chemo treatments. On the not-so-good side, the doc did notice that the upper ducts were much smaller than earlier this year, presumably because of outside pressure from liver tumors, which are also are putting pressure on her stomach and small intestine. Looks like Sarah's liver mets have progressed, which we knew might be the case since she's only been able to get chemo on and off due to a string of other issues - C.Diff. neuropathy, colds/infections, etc. We plan to discuss this with her oncologist and ask what our best options are for chemo treatment. At least for now we are fairly confident that her critical bile duct issue is resolved and she can feel better soon as we head into the Christmas season.

29 Nov - Another Bile Duct Stent

Sarah is scheduled to get her bile duct stent replaced tomorrow (Tues). Her bilirubin was 7.5 last Friday which is already sky-high and it probably went up over the weekend. Despite the high number and her yellow eyes and skin, she's managing ok and the plan is to have the procedure tomorrow be outpatient. The doc says Sarah should get a metal stent this time vs. a temporary plastic one since the permanent kind should not clog up like the past ones have. Sarah was relieved that we could get this scheduled right away on Tuesday.

27 Nov - Thanksgiving

We enjoyed our Thanksgiving meal with visitors Elizabeth, Thomas, Kerry and our niece Jane. Here we are, ready to dig in!

Today on Friday, I went to treatment with Sarah. She didn't get chemo again because now it looks like her bile duct stent may be plugged again. We started noticing day before yesterday that her eyes were getting yellow and it is much more noticeable today, plus her skin is getting a yellow tint. It's likely that we'll have to take Sarah in for a bile duct stent replacement some time in the coming week, but hopefully it will be an outpatient procedure. She's feeling tired but decent overall, and she was really happy to be able to celebrate Thanksgiving at home and enjoy the meal!

21 Nov Update

First some pics from Ben's birthday last week. One with Sarah and Ben and another of Ben blowing out the candles on his cake.

We've had an eventful week. Ben's been playing with his birthday presents, especially the Sony PSP game console he bought himself with some of the gift money he received. He also bought himself a "Rip Stick" caster board (a kind of skateboard) and has quickly gotten the hang of using it - can't keep him inside; he's really determined to master it. Sam got some new things as well after we realized he still had some gift cards back from his birthday - I took him out shopping and he got to pick some things for himself as well!

An update on Sarah - she didn't get chemo again this past week, which we were not happy about. Her white blood cell counts were very high and she was clearly fighting off some bug, so the doc gave her antibiotics and said we have to take another week off. If she's doing better, we're expecting that she can get another chemo treatment this Friday right after Thanksgiving. Overall, Sarah's not feeling too good this week. The neuropathy is making it challenging for her to stay steady on her feet. She's stumbled and fallen twice in the past two weeks. It's still ok if she takes her time walking and is careful - I know Sarah would rather do that than go back to using the wheelchair right now. We were excited to hear that a new drug called Eribulan has been approved for breast cancer treatment, but it also has neuropathy as a side effect. Sarah's profile fits the new drug's treatment focus, so there's a good chance she'll try that when it is time to move off the Abraxane.

13 Nov - Ben's Birthday

First a quick update on Sarah - she didn't get chemo this week since she and her onc agreed that she needed a week off to let her body recover a bit. Neuropathy seems to be getting a little worse. But her blood test results are coming back good and holding fairly steady.

So Ben's birthday was today and he had a great time. He got some birthday wishes via phone and was also able to have a part this afternoon at the movie theater (we saw the new movie "Megamind"). And he reached his goal of buying a new Sony PSP game device - with the help of his monetary birthday gifts, we've already ordered one and now he can't wait to get it! :) I'll get some pictures of the birthday uploaded but I'm having a little camera trouble that I need to resolve first.

5 Nov - Chemo Day

Sarah got another 80% abraxane treatment today. Her blood test results were again fairly good so we're hoping that the chemo is helping her. Sarah's doc said we should get scans after 6 treatments have been completed - so 2 more. But if her tumor markers continue to go down, he's thinking there really isn't a need to do a scan yet - although we want to know how things look in her liver, it makes sense since the results of the scan would be unlikely to change her treatment if markers are dropping.

We've got a busy weekend coming up with some activities for the boys and taking down the Halloween decorations... :) And we'll lay low some of the time, too. Since it's the fourth week in a row, it looks like the chemo is hitting Sarah a little harder this week - she got very tired after treatment today and crashed early tonight.

4 Nov - 3-Day Walk For The Cure

Sarah's friend Nicole is doing the Susan G. Komen 3-Day Walk For The Cure in Dallas. She's got a picture of her and Sarah at the 3-Day walk last year posted on her donation page at http://www.the3day.org/goto/Nicole.Smith - and please consider supporting the cause while you're there! The walk is this weekend but donations are also accepted for a period after the race.

Sarah should be getting another 80% chemo treatment tomorrow. She's feeling about the same as she did last week and we're hoping that the chemo treatments are doing some good in shrinking her liver tumors. We won't know for sure until Sarah gets another CAT scan, which we need to talk to her doc about.

28 Oct Update

Here's a video of Sam at his 1st grade music program, singing a song called Witches Brew. Ben's doing well, too. He's continuing with karate and also busy with many school projects. 4th grade is really ramping up on homework and at-home projects!

Sarah got an 80% Abraxane dose again yesterday and her neuropathy has held fairly steady (maybe just a little worse). She also got tumor marker results yesterday - her CA27-29 and CEA were both around 250. That's a bit high for CEA but not for 27-29. Basically, it's not a lot lower but also not a lot higher than they were before, which didn't surprise us since she's only intermittently been able to get treatment. Overall, we see it as good news and indication that we're holding ground despite the challenges with C.Diff.

Sarah continues to build energy and maybe some strength, too. She's driving more and walking short distances. Hasn't used the wheel chair in the last two weeks. :)

24 Oct - Eventful Weekend

First an update on Sarah: although her neuropathy didn't get worse, it also didn't get better. But that and a little weight gain plus decent blood test results allowed her to get another 80% Abraxane dose last Thursday. She felt relatively ok over the weekend and continues to feel more energetic overall. Our plan is to keep on with this chemo as long as her neuropathy doesn't get worse.
The boys have had quite a weekend - we went to the Fall Indian Guides campout where Sam tested for the "Haylushka brave" qualification and passed. He worked hard to memorize many things for the program over the past few weeks and we also did several projects together that were part of the Haylushka requirements. In one picture you can see him proudly pointing to the official Haylushka hat that he gets to wear to Indian Guide events now! :) In the other two pictures Sam is enjoying a cup of camp cocoa and Ben and I are checking out a tee pee that was set up at the camp.
In the last picture, Sam is next to our big pumpkin. It didn't get as large as it's parent, our giant pumpkin from last year, but it does seem large for a pumpkin that hasn't received any special care and nurturing. Just in time for Halloween!

17 Oct - Sarah Got Chemo

Overdue for an update! Sarah's C.Diff. test was negative last Thursday and her weight seems to have gone up 2 lbs. Her gastro stuff hasn't really returned to normal, but based on the negative test the doc went ahead and gave her an Abraxane treatement, which is a relief for us. Due to continued neuropathy, she got an 80% dose so we can see if it makes it worse or not. But that's still pretty good. Sarah is perking up a bit now and seems more energetic. She's also in a less anxious mood now, which is a relief for her as well.
On an unrelated note, the rest of us are under the weather big time. Sam caught some kind of stomach bug on Friday and was throwing up most of Friday night. Now Ben and I have it as well - but Sarah's got no symptoms so far. We're keeping our fingers crossed!

12 Oct Update

Quick update on Sarah: she's feeling stronger and her weight held steady this week, but other symptoms of C.Diff. are persisting. She'll get another C.Diff. toxin test tomorrow to determine whether she can get chemo this week. We don't like having to take this multi-week break, but the doc said chemo treatment during a C.Diff. infection would put her in the hospital. If her test is negative, we'll have to see if maybe something other than C.Diff. is causing her digestive tract issues. We'll know more later this week.

1 Oct - No Chemo Again

Well, we went to see the doc treating Sarah's C.Diff. this week and were surprised to discover that she tested positive for C.Diff. again - so, now Sarah's taking the other antibiotic called Vancomicin. She's still slowly losing weight, and her oncologist doesn't want to give her chemo while she has an active C.Diff. infection - so it is very important to get this to clear up.
Overall, Sarah is struggling to improve. Trying to build strength, but her body's reduced nutritional absorption (due to C.Diff) and worsening neuropathy make it a challenge. She's eating fairly well but it just goes right through her body because of damage to the lining in the intestines. Over the next week we'll be anxiously watching whether the C.Diff. starts to go away. Not likely she'll get chemo next Thursday but we are going to talk to the doc about the overall chemo treatment plan for when she can resume it.
On the bright side, Sarah's bilirubin level came down from 2.8 to 1.8 which is good, and her tumor markers are only up a little bit from the last check despite intermittent chemo treatments.

28 Sept Update

Sarah didn't get chemo last Thursday which is what we were planning, but her white blood cell count was low anyway so it wasn't an option. She's gaining strength physically but her bilirubin is up to 2.8 and her neuropathy is pretty bad despite taking a few chemo breaks. Sarah can't feel much in her hands and feet and that's one of a few things making her more anxious about how things are trending. The doc gave her some Adavan to take as needed to smooth things out when the anxiety gets too hard to ignore and that has helped.
On the flip side, Sarah has been walking up and down the stairs on her own more often to build strength and even walked down the street with a friend today while holding on to the wheel-chair for support. She hasn't been able to do that for a while, so I consider that a real victory! The plan is to get Abraxane one more week if possible and then talk to her doc next Thursday about what other chemos we could try that don't have nerve damage as a side effect.

20 Sept Update

Sarah got chemo last Thursday and has continued to build a little more strength. Still not putting on weight yet but she's trying to exercise and eat more in order to get that turned around. We were fairly active over the weekend - Sarah came out shopping with the boys and me. Browsing in Costco is always interesting, and she hasn't been able to do it for quite a while. We made use of the electric carts that stores have so she didn't have to walk, but it was tough to keep the boys off the carts. They really wanted to drive them!

15 Sept - Update

We had our new nanny Donna start this week and things are going well so far. We put her to the test right away since I had to go on a short business trip (just got back) but everyone survived ok.

Sarah's feeling some of her strength come back very gradually. Good trend! She's able to make it up and down the stairs with no help now, which is a huge step forward in terms of feeling a little more independent again. There are so many little things that we often take for granted. It's a victory for Sarah to be able to walk up steps (slowly!) normally rather than place both feet on every step and pause for a breather on each one. Chemo this week didn't make her feel too bad and since her C.Diff. toxin test came back negative, she can stop taking the antibiotics for that. We'll be vigilant for signs of the C.Diff. recurring - we've heard that it typically happens a few times before it's really fully cleared up.

11 Sept - Got Chemo

Sarah got an Abraxane treatment this past Thursday, which is good news but something she at the same time was not looking forward to. It will be a tough weekend for her as the effects of the chemo kick in, but hopefully well worth it in terms of fighting back. Sarah is still very weak but we think there's some improvement in her strength. As the C.Diff. infection slowly goes away, she should be able to gain more energy. A test is in progress to see if the C.Diff. is still active and we should see the results on Monday.

6 Sept - Labor Day

Catching up with some pics. You can see Ben's and Sam's first day of school, Ben on a paddle boat this weekend, and our Labor Day cookout meal in the back yard. It was a very nice day so we got to spend some time outside! Sarah laid pretty low this weekend but enjoyed having a few friends visit to catch up.

3 Sept - No Chemo This Week

Sarah went for treatment yesterday and go her weekly Herceptin but no chemo. Her body is still too weak and she's not yet fully recovered from the C. Diff. infection. As we look back and do more research, it's possible that most of Sarah's recent symptoms can be explained by the C. Diff., which is actually good news since we know that it is treatable. C. Diff. is a tough infection to shut down completely, but with several longer courses of a certain antibiotic it should go away (which she is taking now) - and Sarah should be able to gain some strength back and recover her Albumin level and blood counts. We'll have to be patient. Hopefully next week if her gastro process is working better we can get her a chemo treatment.

We'll be spending the 3-day weekend close to home so everyone can relax and recuperate.

1 Sept - Sarah Home From Hospital

Sarah's oncologist decided she should be fine at home and approved her discharge from the hospital. I brought her home tonight. She's still feels pretty weak - more than before we left the house last Friday - and she'll have to stay on the special antibiotics for 2 weeks in order to try and clear up the C. Diff. infection. Could be she's had it for a while and it is possible that it's been taxing her system the whole time. We're hoping that clearing it up will allow Sarah to gain some strength back! Her blood test results still have quite a few "low" values but they steadied out and with the right nutrition and a cleared up system we also expect those to creep back into their normal ranges over time. For now, Sarah's just happy to leave the hospital and be back home - even though the stairs do look pretty daunting to her.

31 Aug - Update

I spent the evening with Sarah in the hospital today and she's not feeling too bad except for the edema (swelling) all around being very uncomfortable. But her blood test results have a lot of low out-of-range values, so we're not sure when she'll be able to come home and we're also not sure what's causing that. Tomorrow her oncologist will be coming to see her and we'll have quite a few questions for him.

30 Aug - Stent Replacement Went Well

Sarah just came out of her stent replacement procedure. Despite the fact that they gave her a general anesthesia this time, she's feeling pretty good (relatively) after it. The doc was able to remove the old stent, clean out the bile duct and place a new stent of the same size - so it was a full success from our perspective. This will eliminate a possible source of infection and make sure that her liver continues to drain well. The oncologist said that now they'll focus on stabilizing her potassium, calcium, etc so she can go back home - the estimate is Wed and we'll try to beat that. :) She's on three antibiotics, so hopefully that will clean up the C. Diff and anything else causing trouble.
Ben and Sam each had a great first day of school and they are excited about their new classes and teachers. "Grandpa and Oma" have been a big help in taking care of the boys while Sarah's been in the hospital!

29 Aug Update on Sarah

Sarah's got some complications that are going to keep her from coming home from the hospital yet. She tested positive for a GI infection called C. Diff - it's often seen in immuno-compromised patients that take antibiotics. It can be dangerous if not treated and is easy to spread to other patients in the hospital, although it's not as serious for healthy individuals. As a precaution, she is in "isolation" which means anyone in her room has to wear gloves.
Her potassium is now back in the normal range but they want to see if it will hold there or just come back down. Other test results are out of range as well, so I think we'll need have Sarah stay for observation - her albumin is low which causes swelling (edema) and her calcium is now really low at 6.5. Not likely she'll get the stent replacement done tomorrow but we'll have to wait and see. The C. Diff. infection could be related to the stent since it's been in for a fairly long time.
Sarah's very sleepy today and has been dozing hard this afternoon. Reminds me of the last time she was in the hospital - a pattern that I hope we don't fall in to this time.

28 Aug - Staying in Hospital

Well, Sarah kind of got "stuck" in the hospital again. But we both think it's good that she's here in terms of getting the care that she needs. Her potassium is stubbornly refusing to go above 3.0 (3.5 is actually the low end of normal). She's getting her third bag of IV potassium and even took some orally last night. The docs took her off antibiotics in order to try and stabilize her potassium levels first, and in the mean time they are taking some stool and blood cultures to check for signs of infection. Sarah feels more or less ok - just waiting for the tests and IV fluids. The GI doc also has recommended that she go ahead and get her bile duct stent replaced while she's here in the hospital. That would be either Monday or Tuesday, so if that happens then I'd estimate she'll be here through Tues or Wed - longer than the "23hr admission" we were expecting yesterday!

27 Aug - No Chemo Again

Well, Sarah didn't get chemo again this Thursday. She is having intermittent fevers again and gets severe chill/shiver episodes every day or two that last up to 20 min. Doc believes she may have an infected bile duct stent so Sarah skipped chemo and is doing antibiotics again. If the fevers don't get better then we'll probably make another attempt to replace her stent in the coming week. Her potassium also took a nose dive this week so we're spending friday evening at the hospital getting her a potassium infusion. Right now we're waiting on her blood test results to see if I can take her home tonight. If not, she'll have to stay the night and get another infusion, but we expect her stay in the hospital to be under 24 hrs.
Sarah's overall state of feeling bad is still hard to explain, especially given the good blood test results she just got earlier this week: her tumor markers are down and liver function tests came back looking pretty good. But she feels like somehow her body isn't regulating stuff very well like body temp and some body chemistry (calcium, potassium).
On the nanny front, we were sad to see our nanny go but have been fortunate to quickly find someone to take over. She starts in two weeks, right when my parents head back to San Antonio.

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.