Surgery Schedule

We heard back from the new surgeon's office this morning. Surgery is set for May 17. Time and details are still TBA. I have a long pre-op appt May 1 that will help with final preparations for surgery. Not much else for now. Just will be in holding pattern for a bit. We will fill in details as we get them.

Overwhelmed

Apr 23, 2012

Just barely got home from meeting Dr H, who is my plastic surgeon. Our 1 hour appt turned into a 2.5 hour appt instead. We basically got the whole history of breast reconstruction, implants, politics, FDA regulations, court cases, options, options and options. The more info we were given, the more questions came up that didn’t have answers, or could only be answered by Dr F (my surgeon). I was feeling so overwhelmed by the time we left that I thought I was going to explode. All I could do was cry.

We stood out on the sidewalk trying to decide what to do, knowing that we needed to talk to Dr F ASAP – both of us together. I called Dr F office trying to pass along questions, hoping he would be willing to call us after hours. I hung up the phone just to have it ring – and there he was. We jumped into the Beast and conferenced with him, sharing all the info Dr H had given and recommended, and seeing if Dr F concurred.

We jumped back out of the Beast and walked right back into Dr H office with a plan on our plate…

Weighing all the risks of this specific cancer, considering all the curveballs we have already been thrown, and the desire to minimize future surgeries this is what the current plan is:

Bi-lateral mastectomy with bi-lateral reconstruction piggy-backed into same surgery.

What does this mean? It will mean several hours of surgery to complete mastectomies and place initial reconstruction expanders. It will mean an extended hospital stay (3-4 days minimum). It will mean return Dr. appts every week for maintenance of incisions and drains that will be placed during surgery. It will mean being hooked to a fanny pack with IV pain meds for at least a week to better manage pain that will be a big concern. It will mean a secondary surgery to place the permanent implants. It will mean 6-8 week recovery period that will keep me pretty much close to home and the hospital. It will mean no trip to SLC for Mother’s Day weekend. It will mean probably not starting radiation treatments until Fall (that will still need to include the chest wall and the auxiliary node areas . It will mean not being put on medication until after radiation is almost or all the way complete. It will mean setting back all the big monster follow up tests until Fall or later.

Most of all it will mean that I will continue to miss all of the Preston’s and the kids events and activities and our precious Summer that we were so looking forward to. I think of everything, this has been one of the hardest parts of being sick. Missing concerts, and taking picts before dances, and Pinewood Derbies, and YW events, and school activities, and playtime, and so many other things. It will mean continuing to miss special time for just Preston and myself that isn’t spent at the hospital or doctor’s offices. It means more long hours for Preston to cover medical expenses, and trying to cover just every day needs, and trying to figure out how to cover unexpected expenses like vehicle repairs and appliances dying….It will mean still needing to rely on our ward family and friends to care for me and the kids so Preston can be at work as much as possible and so the kids can complete school requirements.

It also means reducing the likelihood of a recurrence to almost zero. It means not having to be self-conscious about my appearance when I’m out in public, or when I can get back to an activity I love: swimming. It means having some of my self-esteem maintained. It means connecting with other women going through or having gone through this same trial (I already met someone in the Dr. office today). It means only having two surgeries instead of three. It means compressing my total surgery and recovery time to be as short as possible.

I know that in the long term things WILL be ok. I will be here with Preston and the kids, things will be good again. But for right now and the months ahead, things STINK, big time. I am trying to get my brain to wrap around things, about the monster decision we made today, but it isn’t going there yet. I am just in the emotional stage of things still, and the calm rational stage hasn’t caught up yet. I know it will, just not there yet.

Please forgive me for just throwing this out there to everyone. Emotionally, just can’t handle lots of phone calls right now. So hard to type, and when talking all I do is cry. Hope everyone will understand. We should be able to post in the next day or two about surgery schedule. Will keep everyone posted as best as we can.

For now, here is some food for thought – for me as much as anyone…Alma 36:3, 27, 25 (slightly modified for my situation)

I beseech of thee that thou wilt hear my words and learn of me; for I do know that whosoever shall put their ^atrust in God shall be supported in their ^btrials, and their troubles, and their afflictions, and shall be ^clifted up at the last day….

And I have been supported under trials and troubles of every kind, yea, and in all manner of afflictions; yea, God has ^adelivered me from prison (non-stop severe illness from chemo), and from bonds (being paralyzed after surgeries), and from death (the promise of a long and fruitful life); yea, and I do put my trust in him, and he will still ^bdeliver me.

Yea, and now behold… the Lord doth ^agive me exceedingly great joy in the fruit of my ^blabors (I am alive, I am still fighting, I am healing, I take nothing for granted)

Stay tuned….

Monmouth Stake Women's Conference

Our stake hosted its annual Women's Conference a couple of weeks ago. One of the projects the stake decided to do was the Cancer Care Packages that Kaeli is doing for her YW project. She was very excited that the stake picked up her project and even more excited to work with Christy to coordinate all that needed to be done.
I missed out on all the fun because it ended up being my 2nd surgery weekend. It sounded like it was a HUGE success and 48 out of 50 bags were completely finished. Kaeli was thrilled with the way the class went and that so many bags were completed. It sounds like it was a really wonderful experience for everyone involved and the bags will be distributed to many women throughout our hospital system to let them know that they are cared about.
It was a wonderful way to be able to give to others what was given to me when I was first diagnosed. I hope that they will be something special for others too.

Kaeli & I sat down together to put a list of items together to go into the bags. There are things that were special to her that she added to the list of things that I found helpful over these last months. The sisters in the ward were very generous with their donations as you can see by these picts.

Part of the class was to have the sisters paint and stencil the bags and to make scrap thanx cards as well as put the bags together. Kaeli was esp impressed with one sister who used the paints to free-hand picts...pretty awesome talent that was perfect for making the bags that much nicer.

A finished bag...

Everyone was really thrilled that almost all of the bags were completed and ready to be distributed. Pretty amazing accomplishment!

Kaeli did a really awesome job at helping Christy get things ready for the workshop and put all her efforts into overseeing the workshop. She ended up mostly running things on her own since I wasnt able to be there and Ceana ended up taking care of kiddos at home. She totally rocked!

This is a pict of Kaeli with JoAnn and Sarah from the GSH Her Project. JoAnn is the oncology family coordinator and in charge of distributing cancer care packages to the women who come in for treatment throughout the GSH hospital system (which is in more cities than just corvallis) I received my care package from her all those months ago. She was thrilled when she heard about Kaeli's project and was very excited to come and be a part of women's conference. We were thrilled to be able to send so many completed bags away with her. She just gushed over Kaeli and the whole conference and how successful things were. It really was an amazing day for everyone who participated. Way to go Sis, you rock!

Pinewood Derby Days

Last week was the ward Pinewood Derby. Preston was out of town with military and I was under the weather so the boys got to go with our best friends, the Jeffries. Miss J took all of these fabulous picts for me and definitely captured the excitement of the night.

This is Colton's finished car. Aaron & Christy helped him build/paint/finish it in time for the derby. It turned out pretty awesome!

The starting line up....

Apparently the night was quite the nail biter, even the big boys apparently couldnt tear their eyes away from all the action.

And they're off....

Ecstatic!

"I cant believe it!"

Whoooo-hoooo!

High Fives All Around

The winners circle - Jared (1st), Corben (2nd), Colton (3rd) - Colton won races against both boys, but in the final run they all raced against each other. Funny thing that all 3 of these boys had help from the same dad (Awesome Aaron) to get their cars ready and perfect for racing. Way to go boys!

Colton's awesome Sonic Racer

He came home SOOO excited to have gotten 3rd place. Quite an accomplishment considering how many boys participated that night.

We just cant say thank you enough to the Jeffries family for being our kiddos 2nd family. We just would not be able to make it through withouth all of you! Thank you so much for all that you do, and esp for helping Colton have a fabulous experience with the Pinewood Derby and for capturing the wonder of such a special night! We love you TONS!!!!

She Knows Her Stuff...

Ky found a rogue orange in the outside fridge. As I was opening it for him, it's amazing smell drew a crowd...

Kelsianne was in the library cleaning up when she piped up "Mom, I want an orange too" to which I replied that there was only one big orange and she would need to choose something else, maybe some small oranges....

She didnt even blink with her immediate response "He could share. Jesus wants us to share right? He tells us we should share. Ky could share." She nailed it right on the head with that one.

Thankfully she was very thrilled with getting to eat her small oranges right out of the can, so the big orange was left for Ky to enjoy.

It really is apparent (at times) that she has learned this concept. When Ky discovered HER dinner choice of leftover chkn nuggets he asked for some. Without even a fuss she willingly divided her spoils with him.

They were both content with oranges and chkn for dinner. Sometimes life really is so sweet and simple.

Showered With Flowers

 Today I came home from an outing to find beautiful flowers sitting on the countertop. This last week, especially, has been one filled with the gift of flowers from so many people. It is really amazing what flowers can do to brighten a room, and especially to brighten a heart. It seems that flowers have arrived on days when I have felt as gray and sad as the weather outside. They have brought smiles and the love and friendship from so many others.

Thank you to all who have been so very thoughtful and who have brightened my day and my heart with your wonderful, beautiful gifts.

Beautiful, brightly colored bouquet from my sis-in-law in England. They arrived on day of MRI that was extra rough. Couldnt have been more perfect timing!

Beautiful, soft colored bouquet from my BaxterClanGals. They have arrived to lighten our heavy hearts from the news of having to go through even more difficult surgery and recovery very soon

Home-grown, hand-picked bouquet from a dear sister in the ward who is also extended family. Her gift of flowers (and homemade choc chip cookies for the kids) and her time, was a wonderful blessing yesterday just hours after our news of upcoming difficult surgery.

Wonderful, bright, cheery bouquet in my very favorite color! Never knew there were so many shades and kinds of purple flowers. These arrived at the hospital last weekend @ surgery #2 with love from dear ward friends. Means so much to know that we were being thought about by so many others on a day that ended up being extra rough.

These amazing home-grown tulips also arrived last weekend from a family in the ward. They have been a wonderful addition to our room and having them right there by my bed was extra good medicine!

These beautiful roses were sent from my youngest sis-in-law when I was first diagnosed with cancer, but I had to share them again. I remember we were so enthralled by their exquisite color, and it is wonderful to have some of them still hanging in my kitchen to remember the love that came with them.

Preston's parents have sent flowers several times. This Fall colored arrangement arrived in November. I was amazed to watch many of the flowers start to dry within the arrangement. It was wonderful to have so many I knew I would get to keep long after November had come and gone. I have tried to take flowers from each bouquet (that included flowers that could be dried) and have them hanging in my kitchen. So many have arrived that I am going to have to find another place to keep hanging them. Oh, to be "burdened" with such a wonderful task :) Everyone should be so blessed!

A strikingly beautiful poinsettia arrived for Christmas from an older couple in our ward. These picts and the sweet memory of their gift means even more now that we will be losing the sweet sister who was so thoughtful of me even in the midst of her own health challenges.

A great big, heart-felt THANK YOU goes out to all who have sent flowers and other cards and gifts to let us know that you are thinking about me/our family. They have often come on those days that I have needed them most. We have been blessed in so many way over these last difficult months because of your friendship and love for us. We would never have been able to get through this without you! Thank you so very much!

40 Things

Today is Preston's birthday. I have tried to think of what I could do to tell him how much I love him on this extra special day. Here is what I came up with: 40 things of why he is my dearest love, my darling, my best friend, my everything. The list could be MUCH longer, but in honor of this extra special birthday, I thought 40 things would be a good start.

Happy Birthday, my love, I hope it is a wonderful day.

1- He is PATIENT

2- He is Thoughtful

3- He loves, gives, serves with whole heart

4- He works so extra hard to care for me/kids

5- He is compassionate

6- He is tender

7- He can make me laugh, even on my worst days

8- He holds me when I cry

9- He supports all my attempts at developing personal talents

10- Never denies me anything

11- He is SO smart and wise

12- He is a daddy and not just a father

13- He stands over my shoulder and instantly fixes things

14- He is willing and patient to teach me the same thing over and over (usually techy stuff)

15- He always has a positive attitude and outlook

16- He often sacrifices his own needs for me/kids

17- He fulfills his callings with his whole heart

18- He still thinks I'm beautiful

19 -He misses me when he has to be away

20- He tells me I am his "lovey"

21- He is always willing to help the kids with school work, esp the hard stuff

22- He takes special time with each of the kids whenever he can

23- He has been so gentle with me on those days when I have had to rely on him for every basic life skill

24- He still calls me sweetheart

25- He still puts up with me when I am grumpy

26- He reminds me to listen to my heart

27- He is a miracle worker with hearth and home

28- He pats backs, refills gatorade cups, and endlessly cleans up for sick kids and keeps a solid sense of humor

29- He still desperately hates to leave me

30- He has an extra tender heart

31- He is not afraid to cry when the situation deems it necessary

32- He has awesome ideas

33- He stays calm & rational when I am not

34- He reminds me of what is really important

35- He is the expert travel agent

36- He leaves work at a moment’s notice to be with me @ Dr. appts

37- He is still a child at heart

38- He is always sincerely excited about my/the kids’ accomplishments

39- He is an amazing, talented musician in MANY areas

40- He can tell jokes and sing silly songs that make me and the kids hysterical with belly laughs

Microscopic Shrapnel

That is what I have, still.

A small Dr. appt today turned into a lengthy discussion with our surgeon about the pathology report we received.

This pathology report indicates that even though ALL the other tests have come back clean and good to go, I will soon be scheduled for a full left side masectomy accompanied by reconstructive surgery.

We meet with the plastic surgeon late on Monday. After that appt we will wait to hear from my surgeon of when I will be scheduled at the hospital.

This surgery will require a longer stay at the hospital, and a much longer recovery time. Both will depend on how well I do, just taking one day at a time.

Lots more happened today, in fact things were kind of crazy in the whole process of things, but for now this is the basic info we wanted to share.

Will be sure to post more over the weekend with hopefully more detailed journal entries from surgeries #1 & #2 and from today. Will keep everyone posted as soon as we know more.

Stay tuned....

Here we go again ...

Copy/Paste from today's Facebook posts (with minor edits):

• Getting checked in again. Odd they don't have all the medications data that we updated for them last week.
• Happy to be in a room where the Bear Paws actually works. :+)
• Talked to the surgeon first thing. Apparently she's in the "10% returns" that is normal for her procedure. Lucky gal.
• Allison Sorhus Bevans holding breath, crossing fingers and toes, got a rabbit's foot in my pocket and my lucky underwear on :)
• IV team is here ... they always just call in the "Special Ops" team when she needs an IV. Will keep count ... (only 2 pokes last week) 
• #1 a no-go ... got the arm packed in a hot towel.
• ‎#2 a no-go ... might have to try the REALLY small needle and lidocaine (to allow "digging around")
• Since the nurses only get 2 tries each they are calling in the next person on their list to come down
• The nursing student reminded everyone, "Well, you DID come in on Friday the 13th ..."
• They've got her in a semi-yoga pose to droop her arm down low to fill up her arm veins. Surgery nurse, IV team, and student observer are all here now.
• Numbing a second site ... hope one of these works. Odd to watch all the digging ... owie
• Trying the same site they used last week ...
• ‎#3 a no-go ...
• #4 a no-go ...
• 2 nurses have had their confidence shattered. Sounds like they are going to have the anesthesiologist do it. Not sure if that means they "put her under" first.
• Nurse: "When our itty-bitties come in for surgery often we have to give them the gas to sleep, then we can do the IV." Rory: "I guess between my chemo brain and this IV, I'm just like a 3-year-old today."
• Catch up with what the surgeon mentioned: he is going back in to take out what will look like NORMAL tissue (which is why he didn't take it out last time). They will have to run pathology labs on it all again. If those for some reason come back as positive for cancer then we'd have to come up with a different (ie more invasive) strategy.
• Obviously hoping everything he takes out has "clean margins" meaning he gets all the active cells and a clear zone of normal cells
• OK anesthesiologist is here ... talking about doing her IV start in her FOOT. Looking at her arm again first though.
• I've got a "front row seat" for all of this ...
• #5 a no-go ...
• #6 a no-go ... apparently full doctors get more than 2 tries as he's going in a third time now
• #7 a no-go ... going for the foot now. :(
• ‎"Oh yeah, there's a good one!"  (Nurse trying to offer some positive thoughts with a comment about a vein in the other foot ...)
• Jill is here now too ... that makes 4 nurses and the Dr. here to work/observe.
• Had to hold hands and Kleenex ... (I had stopped posting updates for a few minutes)
• #8 in the right foot ... no go
• #9 in the left foot ... no go
• The doctor actually turned to Jill and asked, "Do you see anything else?" He was about to the end of what he wanted to try too. The danger of doing the gas first is they might not be able to get the IV started then either, so that wasn't an option for her.
• Started to fear we were going to get to #13 ... (still writing in past tense, catching up after the excitement was over)
• Gave up on the feet. (Maybe that's good, so she can be up and walking around tomorrow and start training again for the mini marathon next month)
• Went back up to the arm. His ears perked up when he heard she is a fairly regular blood donor. Checked the inside of her right elbow, looked under near the tricep, checked down by the wrist again.
• Finally went in at the elbow. #10 was today's lucky number.
• Shar Fagersten Wight i'm nauseous just reading this...
• Got the IV going and he immediately got a syringe of "the good stuff" in her. Within about 10 seconds she was falling asleep while still trying to give me instructions on getting food and calling my mom. Always thinking of others.
• Less than 2 minutes after the IV was started she was gone.
• At the end she was worried that she couldn't hold back the tears. Now that she's gone and it's sinking in what she just had to go through, neither can I.
• Another "new development" for us ... first time I've been kicked out to the waiting room while she is in surgery. I guess things have been pretty busy here today and they might need to use the room while she's gone. Since it's already 4:00 and they "close" this area by 6 or 7, we're pretty much for sure going to be admitted for the night.
• Guess I'll go check out the dinner selection at the cafeteria. Will be back online later.
• Ceana Baxter I love you! Fasting for you and mom...
• Thanks. Now I'm crying again. :+)
• I guess it was a good thing I didn't actually leave for dinner ... 4:20 and the surgeon just came out to find me. He said "We took a pretty good swath" meaning he again thinks there is very little chance they could have missed any of it. We should know for sure by Tuesday of next week.
• Every time I think about leaving to get a drink or use the restroom, something happens.
• The nurse just came out to ask if she needed any pain meds. Huh? Isn't she back there with you guys in recovery? Then I realized she meant that they think I'm taking her home soon, and wondered if she had meds at home for tonight.
• They are prepping paperwork for me to take her home, but if she's slow to wake up we'll be ready to stay overnight (that was the plan).
• Shut down the computer intending to go forage for food but then the nurse came out to confirm Rory is staying the night
• Got the room number so I am off (for real) to get dinner then will head upstairs
• Oops just heard three pages: "Rapid response, to the cafeteria!" Maybe I will wait a few minutes before leaving in case they are having trouble up there.
• Also overheard the ER is full. What's going on today?
• Just got to the room. Reporting no pain or nausea right now. I think she must have 25 blankets on but is still cold
• 8:30 and Rory's trying to sleep. They are taking good care of her, as evidenced by the 30 (no kidding) blankets and zero pain. Lots of good care going on today and tonight.
• Time to copy this all over to the blog ...

I guess that's about it for the night. Rory is more awake and communicative than she was at this time last week, so that's a good sign. They are starting to give her meds orally instead of only the IV, which is another good sign. She is drinking water and ice, and even asked for broth ... yes, another good sign. All by 9:15pm. Might not be here for too long tomorrow. Hope so anyway!

Pathology Report Update

I got a phone call from my surgeon late this afternoon. He had good news and not so good news.

The good news is that the auxillary nodes under my arm came back with no malignancy at all - totally clean. Our decision to not remove the nodes "just because" was definitely the right one.

The not-so-good news is that there is still residual cancer tissue where the tumor was. The best way I can describe what my surgeon said is that even though the tumor shrank from the chemo, the tissue itself didnt. The remaining tissue is still in that outer area where the tumor originally was - outside the good tissue zone Dr F thought he had right on the nose.

The other not-so-good news along with this report is that I am being scheduled for a 2nd surgery on Friday afternoon. Dr F is hoping to go into the same surgical site and to be able to clean out the area still with "lumpectomy" in mind, and nothing more critical. We are planning for me to stay overnight as I am the last/late surgery and the anesthesia part isnt one that we can change (which is the part that gets me admitted) along with knowing I will probably need extended time with IV pain meds again. We arent sure yet whether Preston will stay with me at the hospital or whether he will come home to be with the kids and then come back to me on Saturday. We will just wing it, again, once I am out of surgery.

The extra blessing with knowing about surgery is that our dear friend JT will be working again that day and I will be solely hers after surgery and until I am settled. Knowing she will be there for me and for Preston will be more wonderful than words can say. It is a great tender mercy to know that she will be there to care for me and Preston.

I think that Dr F was as blind-sided by the report as we are to receive the news. Things really went so well last week, this has just taken us all by surprise.

After the call, I have spent the last several hours sobbing and making important phone calls to make arrangements for kids and school and weekend events that will now not be happening.

It has been really hard to just take the news at face value vs second guessing the decisions we made last week for surgery #1. It has been hard to make the phone calls and to undo all of the long weekend plans we had in place for our kiddos and cousins who were supposed to be with us.

I am very grateful to all of those who have been so supportive and understanding. For those who continue to step up to the plate for us when things continue to not go as planned. For those who love us so much to make changes to their own plans to help us focus on my care and for helping our kiddos through another surgery weekend. We would be lost without all of you.

At this point, we really dont have anything more to tell. Will just be hunkering in here at home and resting and prepping for Friday. I am sure that Preston will, again, do an awesome job of posting to his FB page and to the blog here as Friday comes and goes.

Stay Tuned....

Post Surgery Day 1

It's a bit late, but here are the Facebook posts from yesterday:

• I got back to the hospital about 9:30
• Apparently Rory had been needing IV mess almost every hour
• Helped her eat French toast and an omelette (I didn't eat any of it for her) before the latest infusion started making her eyes heavy
• Christy and her parents were in the area so they stopped in for a nice visit with a very sleepy girl
• The visit was very good for everyone though
• Pharmacy here in town doesn't have on of her prescriptions and the pharmacist didn't want to fill the other one without talking to the doctor personally
• He expressed concern about what he thought was an unusually high dosage
• The hospital pharmacy partially filled the missing script, Monmouth has the other one, and the local pharmacist got his questions answered
• So now we just wait until Rory can go for at least a few hours without needing IV LEDs and can move around on her own
• About 11:30 now and she's getting some more sleep. Apparently it was a rough night thanks to a very "animated" patient down the hall who insisted on not using the intercom system to converse with the nurses' station non-stop
• IV meds ... A few hours without IV MEDS. Apple auto correct behaves differently than the one on my phone.
• Sorry for the late updates ... need to finish off for yesterday
• Nurse wouldn't discharge (probably Dr's orders too) until Rory could get up and walk around. My assignment: take her for walks up and down the hallway
• Since we were staying past lunch she went ahead and ordered room service: Mac & cheese with fried zucchini.
• She proceeded to stir the cheezy noodles and veggies together ... GROSS!
• Went for a walk to the next wing and back. Glad she's feeling better.
• By 1:30 Rory was telling her nurse that she was ready to go home. They tried to track down the doctor who could give the order, but apparently was in surgery
• More than an hour later, still looking for that doctor. Must be a LONG case down in surgery.
• Eventually her surgeon stopped by. He happened to talk to Rory's personal nurse downstairs. She assumed he knew Rory was still in the hospital, he assumed she was at home. Eventually he figured out she was still here and came up to check on her.
• Said everything was fine for her to leave.
• Should have pathology back by Monday next week ... that will be the definitive answer on the presence or not of "microscopic disease"
• Around 3:30 when we finally left the hospital
• Stopped at the pharmacy to retrieve her prescriptions. One was changed (thanks to an over-zealous pharmacist) and they filled it there instead of giving it back to me per the agreement. Seemed a couple of over-reaches on his part today, but at least it got filled.
• Dropped off the other script in Monmouth
•  Home before 5:00; retrieve the Beast, check the mail, pick up prescriptions, put flowers in water, start science experiment with Caiden, tuck in Rory, Ceana to start cookies, prep for the concert.
• Concert went great!
• More updates from Rory when she's up and around ... I suspect sometime later today or tomorrow she'll get started on filling everything between these Twitter-like updates. :+)

Surgery Day Part 2

More cut-and-paste:

• 6pm: just got a visit from the surgeon. He said he couldn't find her nodes at all, which is a good sign considering she definitely had a positive one when this all started.
• He said her tissues were a bit more scarred than usual due to having the chemo before the surgery.
• No clinical evidence of problems with the nodes, but we won't know for sure until after the pathology is complete (probably early next week)
• The tumor was also a bit tougher than normal to remove, again because of the scarred tissues, but he thought the margins (interface between the tumor and normal tissue) looked good.
• He remains VERY happy with the way she responded to the pre-operative chemo treatments, and based on what he could see doesn't foresee any need for follow-up surgery.
• He left to "go find her personal nurse" and make sure she had all that same info. :+) Now we just wait and see how long it takes her to wake up, which will likely be the determining factor in deciding whether I'm taking her home tomorrow.
• Or tonight
• They are trying to prepare a pain med prescription, which is a bit difficult given her intolerance / hyper sensitivity to most of the tools in their kit. The surgeon really thinks she won't need more than an ICE PACK.
• Overhearing the nurses setting up a "late discharge bed" for Rory ... looks like we're going upstairs (to the main hospital) soon. Rory's not out of post-op yet.
• ‎7:30 and Rory's still struggling to wake up. Totally normal for her. We have a room assigned upstairs, just waiting for the word to move our gear up there. Still possible I'll be bringing her home later tonight.
• Got her moved to her suite with a fabulous view (of the next wing of the hospital). We decided to send me home to be there with the kids in the morning, mostly so Caiden doesn't have to go to Seminary with the girls at 5:30. I'll also pick up prescriptions on my way back down to retrieve her in the morning.
• Planning to be home tomorrow (Friday) with a possibility of getting some work done too. Maybe.

Surgery Day Part 1

Copy-and-paste of my Facebook updates for those who don't follow along over there:

• In Corvallis for "the big day" with Rory
• Mammography went OK
• We're now in short stay for pre-op
• The surgeon agreed to remove her port as part of today's procedure. This will mean one less office procedure with local anesthetic. It will also mean her future blood draws will have to be via needle, but those will only be every three months.
• He also agreed to prescribe a pain patch for the med she found to be helpful during her last hospitalization
• Opened the blinds a few minutes ago to let in the blazing sunshine. Now the ground is completely covered by hail.
• They took her down to "nuclear medicine" ... some sort of injection to make the tumor location "light up" during surgery
• Her favorite nurse is here today, which is a huge deal for Rory. Everyone is always helpful and friendly and willing to listen, but having "her" nurse is a huge blessing for her. Rory reports being WAY more calm than any other surgery time, for sure WAY more relaxed than she should be going into things today.
• She's coming back to the room now ... I can hear her laughing down the hallway. Her spirits are WAY up for some reason. She's being very friendly and chatty with everyone. Good times, all things considered.
• Anyone ever used the "Bair Paws" personal heating system? We've never fired one up before today. Didn't blow any warmer than room temperature air ... just our luck to get the broken one the first time we actually tried it. Cool idea though: a hose that connects to the hospital gown, then the patient can (theoretically) self-regulate the temperature of the air going into the gown.
• The nurse who seems to be "in charge" of us in Short Stay apparently used to live in Monmouth and knows the Shinkles. :+)
• Joke #1 from N.M. Tech: "Why didn't Beethoven keep chickens in his yard? Because they always said 'Bach, Bach, Bach'" (Although deaf, Beethoven could "read beaks.")
• Joke #2: "What's invisible and smells like carrots? Bunny farts." (Surprised me that Rory repeated this one back, but apparently it struck her as very funny / Easter-themed.)
• When asked what kind of music Rory wanted to listen to, she asked for "Classical." So they turned on ELEVATOR MUSIC. Pop songs done in that signature style that everyone (of sufficient age, apparently) would recognize not as "Classical" but as "Elevator."
• Nuclear med had to do their injection with a needle. Yay that the lidocaine from mammography was still effective, so she didn't feel a thing!
• She's really stylin ... got her purple gown on, and it matches quite well with the head scarf she decided to wear. The ensemble is finished off with wires poking out of her chest, Bandaids, skin stickers, and now her hand is wrapped in preparation for the IV.
• IV try #1 ... no good
• IV try #2 ... success!
• It's nearing 3:00 and our 2:00 surgery hasn't started. Still trying to be optimistic that Rory won't have to stay overnight ...
• They just wheeled her away ... time for some lunch! :+)

That's our status as of 4pm. I'll do another series of posts as the afternoon progresses.

Medical Oncology Appt

Today was another long Dr appt. Thankfully Preston was with me and his brain was able to ask the most important questions...

We again discussed the surgical options for tomorrow. Even though I think my Dr is not ok with it, we are going to go ahead and choose the option to NOT take out the lymph nodes if the sentinel node is negative. There is still so much info and not enough info out there to really make a defined decision either way. Things are more challenging because none of of the studies really apply to me because we did things backwards (chemo before vs after surgery, positive node up front, but not maybe now)
We are just trying to make the very best decision that we can with the info we have and weighing the higher risks of lifelong complications vs not....

We also discussed my long term health plan. There is SO much more than I ever realized. After surgery, I will have a surical post-op appt, and will most likely have my port taken out at that time. Once my surgical site has healed sufficiently, I will start on radiation. Radiation treatments will be 5 days a week for 6 weeks. Dr M said that everyone is different, but there is the potential for me to be nauseated or have skin reactions. She said that the treatments will be cumulative, so no trouble at the beginning wont neccessarily mean no concerns by the time we are done. Really just wont know until after we get started.

After radiation is completed I will see Dr M again and she will get me started on the meds I will be on the next several years or even the rest of my life. She will also coordinate the next set of monster tests - Mammogram, MRI, CT, etc. We will also get appts set for labs that I will need to have done every 3 months. She will be helping us coordinate everything and then hand me off to the oncology PA for 2 months while she is on maternity leave. She seemed to think I would be in good hands, but encouraged me to continue my search for a primary care provider. Hoping that will happen sooner vs later...

Overall, I think both of us came away from the appt with the info that we needed for surgery and then a whole lot more we didnt even realize we needed to know. I am trying not to be discouraged with so much more that is still on our plate. It wont be near the stress and care that was required for the chemo, but still a lot to think about and be able to manage....

We had one surprise at our appt - a improptu visit from the oncology team social worker. Dr M was running behind so she popped in to check in with me. I didnt realize that I had needed someone to talk to. She mentioned she saw in my records that I had been in the hospital and that started off a whole cascade of concerns and worries and things from the last month and everything still coming tomrrow. I guess sometimes it is nice to chat with someone outside the circle of our daily everything. She is really nice and listened and gave encouraging feedback and suggestions. It was nice to just let some of that stuff out.

Well, guess that is all for now. I am going to try to get a nap (since I didnt get any rest again last night when my heart rate decided to jump almost outside my ok window) and see if I can finish up all of the pre-op preparations and get the kids packed for their auntie sleep over. Still lots to do, and lots of time to practice being calm...

Preston will probably be posting throughout the day tomorrow or will for sure post after I have gone to surgery. Stay tuned for more updates of our adventures!

Sleep Specialist Appt

Today I got a chance to go in to see my sleep specialist. I was able to tell him everything I have been struggling with over the last month. He was pretty concerned, and has a fairly good guess that chemo is partly the cause of my concerns.

He was concerned enough to schedule me for another sleep study on the 17th. Would do it sooner vs later, but have to wait on insurance, and they have a 2 week minimum wait on this particular item to be approved...

It is frustrating knowing that the last month has been filled with nightmares and non-sleep outside my norm and that we have to still wait another 2 weeks to see what is going on. It is hard knowing there is a concern right now, that may not be so prevalent in 2 weeks. Sometimes I think that I am going crazy with the stuff I experience in my sleep and when I get the chance to talk about it or get a study done, it isnt always apparent to others what is going on.

Will just try to be patient and maybe pray that I do have something big happen during the study so they can see how to best help me.

That is all for now. Will post another update tomorrow after next Dr appt. Will try to have Preston keep everyone posted on Thursday as I move through each procedure and surgery and try to keep everyone updated.

Stay tuned....