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!