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.