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....

Clarification

There has been some confusion with one of the items on my "Sacrifice Is..." post

One of the items mentioned a husband caring for a wife in the hospital with terminal illness.
Just to clarify - THAT IS NOT ME (just a reminder that Preston was not with me at all besides ER and admitting because he was home with sick kiddos)

My 2nd day in the hospital I was moved to a new room. My  roommate was a sweet woman who had been rushed to ER and admitted with a diagnosis of MS and another rare terminal illness. Between the two diagnosis, she was told she probably wont have a long time.

Our room was flooded with physical and neuro therapists helping her just try to work on her basic life skills. Her sweet husband was with her most of the 2 days that we shared a room. She still had a long stay in front of her.

She was very sweet and we did a lot of looking out for each other while we shared that room. That time with her, even though very short, made my time in the hospital that much better. She was so amazing to have such a happy outlook even though she had so many challenges in front of her. It also made me realize that we each have our own trials, and I was reminded that mine were pretty small.

I realize that I could have done much more to chat with her and get to know her better in that short time. Sometimes it is hard to know how much to extend to another in that kind of situation. I know that even though that time was very brief, I wont ever forget her or her courage or her amazing perspective and attitude in the face of something so overwhelming.

I was the one blessed by her. Hopefully I can continue on with her example always in my heart and mind to do better with all that we still have ahead.

Sacrifice Is...

*A friend who takes her lunch break to visit me in the hospital instead giving herself a break

*A mom who flies out to stay with us to help even though it is the worst possible time for her to leave home

*A dad who is willing to let mom come even though he needs her even more than we do

*A nurse who helps me prepare to go home and sees me off instead of leaving to go home when her shift was over

*A medical doctor who is willing to see me even though I had been told she would be “out of office” for the next 2 weeks

*A husband who gives up 2 days of work to care for my every need around the clock

*A husband who desperately hates leaving me alone at the hospital, but goes home to care for children who need him even more

*A husband who gives up more work, military and church responsibilities to single-handedly care for 6 VERY sick children.

*A daughter who stays up in the middle of the night to help dad clean bathrooms after little brother was extra sick

*A daughter who gives up sleep/her own free time to read books to her little sister

*Daughters who give up sleep every morning to faithfully attend seminary

*A young man who will not take a friend to prom because he is actively choosing to live what he believes

*A friend who gives up family time just to drive me to the hospital

*A husband who tenderly sits and cares for his wife in the hospital as together they take on a disease that will eventually take her life

*Ward members who take time to make meals and to drive me to appts when they already have so many things to do for their own families

*Dear sisters who have learned new computer skills just to help coordinate extra help to meet our family's needs during these long months

*Dear friends who give up whole days to care for kiddos or to help little ones with school.

*There are so many things I could add to this list...there are more people, more gifts than I can ever count. So many have sacrificed so much in our behalf over these last months, I am not sure we are ever going to be able to say thank you enough or ever repay the kindness and friendship and love that has been shown to us in so many ways, big and small. We have been truly blessed by all of the sacrifices of so many. For that we are so very grateful.

Silly Kids

Something that has been in short supply these last several months has been laughter. Things have just been so extra difficult for the most part that more often than not tears have been shed vs laughter heard. With these 2, it doesnt take much to set them off, and then me in the process. I started out just taking a pict of Kels before she went off to preschool. She actually let us do her hair, and she just looked so cute, that I wanted to get a couple of picts. Before I knew it, Ky wanted in on the photo op too, and the two of them set each other off. I could hardly take their picts because I was laughing so hard. Those moments have been so few. It feels good to get the chance to just have a good tears running down your face belly laugh. These 2 are good at starting those.....

Spring Break Family Day

Preston was able to take a day off work for us to have 1 family day during Spring Break. Our day started pretty early and with extra adventure - our family trip to the dentist. When we arrived I brought everyone running and firing off questions about me. We found out about my cancer just after we had been there, so my appearance totally took everyone by surprise. I tried to answer as many questions as I could. The one medical assistant was clearly rattled and when I told her surgery was next week she asked me if I was going to have a vasectomy - I laughed right out loud at that - she really meant masectomy - but she was really just so startled about the whole thing.
When we go to the dentist, we just try to knock everyone out at once, still takes a good couple of hours plus....All the kids did great for the most part. Kelsianne got a bit unsettled (she still struggles a bit with being extra shy) and shed some tears during her turn. I went back with her and she just lay on top of me while I held her. That seemed to be enough to let her get through her turn and she was thrilled to be rewarded with a new purple toothbrush and a pizza gift certificate. Once again, our Baxter clan came away with perfect check-ups. Of course we also came away with a few surprises - more comments from Dr B about the Baxter cross bite and who will be next in line for Dr P and braces AND that Ceana will need to get her wisdom teeth out sooner vs later. She has already had her braces, so they will need to come out so her pretty teeth dont get crowded and need work again. Will have to look at that for this Summer probably. All in all, a positive experience for everyone and the kids all walked away with a goodie bag filled with fun things.

One of the fun things in the goody bag is a gift certificate to Izzy's - one of our FAVE restaurants! We dont always have time to take the kids to lunch after our appt, but knowing Preston had taken the day off, we were able to take the kids to lunch and just take our time. They had a new mac & cheese that was a big hit with everyone. Ky especially loved it and ended up eating 4 BOWLS of the stuff. We wrote that down on our comment card! It was funny to watch the kids during lunch.  Izzy's has 2 big screen TV's in their large seating area that are usually showing sports stuff. Since we dont have regular TV at home, the kids get mesmerized by TV and commercials of any kind. Their eyes were glued to those big screens at times, it was kind of funny. Everyone ate their fill and a great time was had by all. After eating so much everyone was looking forward to getting their exercise at our next stop - Highland Bowl! It is one of our favorite outings. It was funny that the minute we pulled into the driveway that Ky piped up with "This is where I broke my hand!" It is often surprising to me the things that the little kiddos remember. Of course, he was referring to to a couple of years ago on Spring Break when we were there with friends and Ky got his fingers crushed when he tripped and dropped the ball on his hand. That was quite the adventure.

We got everyone up to the counter and kept calling off shoe sizes and then proceeded to gather balls. It is always a big to do to get us all settled on an outing like this. Finally we were all ready to go, complete with nick names for play (Sonic, Swtpotpie, Mr CoolDad, SuperKy, AmazonWoman, MormonLover) I think Caiden and Kels were the only ones who just used their name. Kels was very adamant that she was just Kelsianne and not anything else, it was funny.
When we arrived, I realized that I hadnt brought anything with me, including the camera. Thank goodness that our phones have cameras these days, not the best images, but at least it is something fun to remember.

Kelsianne

Super Ky

Sonic

Caiden

Amazon Woman

Mormon Lover

Mr Cool Dad

SwtPotPie

Ky was the most excited about everyone's success. Anytime someone got a strike or a spare he would jump up and down. This one I caught him with his own strike, he was VERY excited about that.

I wish I would have been able to get better picts of Preston with the kids. He had come right up with Ky to show him how to better hold the ball and how to swing it vs just pushing it along the floor. It was so sweet to see Ky snuggled next to Preston as they talked. The camera on the phone just doesnt take picts fast enough, but action shots are fun too I guess. It was wonderful to have Preston all to ourselves and to see him interact with the kids one-on-one, he just doesnt get that time with them very often.

Kels just had so much fun. She would sit on the floor with her ball and just push it along the floor. She would cross the line and set off the buzzer. The boys would fuss that she "crossed the line" but she just didnt care, she was just having fun.

Caiden got some extra practice taking Preston's turn on the lane without bumpers on our 2nd game. He was really bummed that he came in last against the 3 little peeps, so Preston gave him some extra time and coaching on our lane to cheer him up. It seemed to work and everyone left happy and tired.

We got home with a little time to spare before I took the kids to karate. Preston ended up staying behind to do some work after all. With deadlines looming and every submission from the other groups constantly changing his drawings, he just had to put in some time to correspond with others who were at work. We were so happy to get him to ourselves for most of the day. We had a wonderful time and made lots of fun memories. It was extra wonderful for me to be feeling well enough to be out and about and be able to spend time with the kids too. It has been way too long since we have had time like this together. Looking forward to Summer when we can have lots of days like this!