Hello Lover Faces

16/12/2023

Good Morning Lover Faces ❣️

10/12/2023

Hello Lover Faces ❣️
I'm having a s***** day 😭

Check out Susanne Tolbert457's video.

04/12/2023

Hello Lover Faces❣️
Just a little reminder

01/12/2023

Last time I got released from wound care they asked me if I wanted to ring the bell, I said no. Less than a week later I was back in wound care with another leg infection. That was 6 weeks ago. Today they released me from wound care again. This time I chose to ring the bell on my way out so that it don't bring no bad juju on myself 😂

29/11/2023

Good Morning Lover Faces ❣️
Happy hump day! We are halfway through the week. It has definitely been a busy one for me. So, let's get to it...

Monday was my 1st 3-month check. My scan was clean 🥳 🎉

In the middle of all of these doctors appointments (4 on Monday) I'm still trying to get moved into the apartment and it is absolutely exhausting for me. The goal is to get settled in and really try and update you guys more.

Love ya bunches❣️

22/11/2023

Check out Susanne Tolbert457's video.

04/11/2023

Hello Lover Faces ❣️
I feel like I'm fighting a losing battle with this leg (and several other things but I'm too tired to talk about them).
I spent over 3 hours at wound clinic today. If you remember, they released me last week. By Tuesday I had these weird looking blood blisters all around the border of the donor site. Turns out I have another infection. I'm back on antibiotics again and back to changing bandages three times a day. 😔

02/11/2023

Botox to the face. Not the fun kind (I think I look fricking amazing for 53 anyway)
Hoping botulism to the face helps the spasms. We shall see 🤞

28/10/2023

Hello Lover Faces ❣️
Some of you know that I lost my dog One-Eyed Wokka this week. I am beyond devastated. I am so lucky to have the 12 yrs with him that I did. I wouldn't have made it this far without him 💔 I really needed a win this week after losing him.

Since July 17th I haven't been released from a single Dr without a return scheduled or anticipated in the future. I just get more Dr's.

Today was my usual wound care Friday. I haven't seen the wound Dr for 3 weeks, I've just been going for dressing changes. She released me today. I think I was in shock. I'm pretty sure I asked a dozen times if she was sure I didn't need to come back. She said nope 😭

23/10/2023

Good Morning Lover Faces❣️

18/10/2023

Good morning lover faces❣️
Still here, still trying to figure it all out.
I thought I would show you some of the progress on my neck incisions (because I still don't think you're ready for the mouth discussion).

I'm happy with how they look. Some of them irritate me a little when they get itchy or tender. You don't really notice them unless I look up or to the side. Not sure what it will look like down the road. I guess it doesn't really matter 🤷

Tomorrow is the appointment with the neurologist to see if we can find out why I had/have the seizing in my face. Fingers crossed 🤞 that they have some answers.

15/10/2023

Good Morning Lover Faces❣️
It's way too early to be up on a Sunday. The dog is already on his first morning nap🐾 Sunday mornings are when I get my pills ready for the week. I've already done that this morning. Last week when I did it, I counted them. I take on average 206 pills a week 😕 I am soooo ready to stop. It's definitely not the how I envisioned my Sunday mornings.
The truth is some of them are really affecting my mental state. I would love to stop taking them. Between the whole cancer b*******, surgery b*******, medication b*******, daily life b*******..... my head really sucks.
I'm trying really hard to stay positive and I know it gets better. But, this is not how I want to spend my Sunday mornings😔

09/10/2023

Hello Lover Faces❣️
Just checking in. Nothing is changing at the moment. We are in a watch and wait mode. Scans will be coming up soon. I still have a lot of doctor's appointments and recovering to do.

Physically, I am doing pretty well all things considered. There are still things I need to work on. Mentally, it's hard to process everything. I'm still trying to catch up on all the things that happened that I don't even remember. I am back to doing most of the things I did before, although some things are more difficult now.

I found out that I no longer have my job, which is devastating. I haven't fully processed it yet. For those of you that know me, you understand the impact this will have on my life.

I'm still here, still recovering, still fighting, still trying to understand. I really don't know any other way to say it.

I know the page gets quiet sometimes but please keep sharing it. Keep sharing the GoFundMe page as well. There are still bills and there are going to continue to be bills until I'm better.

BTW we're going to start talking about really weird stuff on this page. I think there's a lot of things that you guys don't understand about what I had done and how much it's changed the way I live my life. I think it might help if you understood a little bit better what they did. If it tweaks your interest at all.. I can grow hair in my mouth now 🤔

05/10/2023

Good morning lover faces❣️
Let's over share 😁
Brushing my teeth this morning and realize I always brush the teeth that aren't there anymore 🫤😂

29/09/2023

Hello Lover Faces ❣️
It's amazing what proper care can do. This is after only 4 weeks of wound care clinic.

26/09/2023

Back where it all started 🫤 it feels like show and tell in kindergarten. Everybody's coming to look at my mouth.

23/09/2023

Hello Lover Faces ❣️
I am 9 wks post-op
I'm sorry I haven't updated you as often as I would like. I'm doing way better! My face doesn't seize near as often anymore. The graft on my leg is finally healing. I'm tired a lot and there are days that the pain is still bad. I'm learning to work through it. On the days I'm doing good I get out of the house and do the things I need to do.

I've decided I won't be doing radiation. I had 3 Drs that recommended it because of some stupid flowchart that said they should. None of them felt good about recommending it. They thought risk outweighed the benefits. The last Dr I saw in Denver said if I can make it through the first yr with clean scans, he thinks I have an 80% of it not coming back without radiation. Soooo we are gonna have clean scans for the next yr 😁

There's still a lot of healing left to do. I still have tons of appointments and I'm still struggling with this not just physically but mentally and emotionally too. It's going to take time but I'm pretty sure I've got this... as always 😉

Love ya bunches
Susanne

21/09/2023

Everybody's got an opinion 😂

12/09/2023

Nerve block in my face to stop the seizures 🤞

08/09/2023

Hello lover faces ❣️
At wound care having them look at my leg graft. It's nice to finally see some improvement. Hot spring season is around the corner and I want to be able to put this thing in water.

05/09/2023

Hello Lover Faces ❣️
I'm sorry I haven't been keeping you in the loop lately. Time just kind of disappears and I've been dealing with a lot mentally, physically, and emotionally. But I'm working on all of it and making progress. I wanted to give a big shout out to Lindsey - she's been an absolute rockstar through all of this and I don't know where I'd be without her.

Some days are better than others, but unfortunately, progress has been slower than we expected with some things. The facial seizures are still happening, but they're not as bad as they used to be - thank goodness! I have an appointment with a neurologist in October to get it checked out. And while my face doesn't look as bad as we thought it might, I still have some swelling and some of the neck sutures are pretty crazy.

On top of that, the donor area on my leg has been causing me a lot of trouble. I am up and walking but I have a gnarly infection going on right now, and it's not pretty. I'll post some pictures in the comments, but just a heads up - they're pretty graphic.

Anyway, I'm still hanging in there, just struggling a bit. I promise to update more often. Thank you to those that have checked in with me and thanks so much for all your support!

21/08/2023

Good Morning Lover Faces ❣️
5 Weeks post-op.
Updates on the page have gotten quiet. It's not because things have gotten better. We are just trying to figure out what normal is supposed to look like right now.
I'm still struggling with a considerable amount of pain. It's hard to differentiate between surgical pain, nerve pain and muscle pain right now. I fight with myself constantly over medications. I have been trying to do this with as little pharmaceuticals as possible. I fight with myself for days on end sometimes before I will take something that does more than "just take the edge off" Then, I cry because I'm disappointed in myself that I couldn't just push through. I get constant reminders from friends and Drs that this was "MAJOR SURGERY SUSANNE!" Uhmmmm, I wasn't built for this wait and you'll be better stuff. It takes too long 😒
I'm just starting to go back and look at messages and all of the things I have missed over the past 5 weeks (truly 8, it's all been a blur). I may have opened some of your messages weeks ago, that doesn't mean I have read them. Even if I did, it doesn't mean I remember reading them. Hell, I probably even talked to some of you and don't remember doing that either 🤷. Give me some time to catch up and I will start to reach out.
For my amazing friends that have been here and continue to be here for me through this ❤️‍🩹you didn't have too but you did and I am eternally grateful. I'm not sure how I will ever return the favor but I will spend the rest of this life trying 💕
As always, love ya bunches 😘
Susanne

17/08/2023

Hello lover faces ❣️
I didn't mean to get anyone's hopes up the other day. I still have a whole lot of 1 step forward 2 steps back to get through yet. The past 2 days have been pretty bad. Still trying to work through meds. Right now I'm literally doing nothing but sleeping.

15/08/2023

Care
Probably one of the best appts I've had through all of this

15/08/2023

Good Morning Lover Faces ❣️There's a lot to talk about but let's start slow. I'm up and waiting on the day. Bed is made, dog has been taken out and I've got a little coffee in me. My schedule looks like I have things to do today. Thanks for keeping my s**t together Lindsey 😊

12/08/2023

Hello friends. Lisa W. here. This update is a double-edged sword of sorts. Good news first. This is a quote from Susanne from earlier today "The best 24 hours I've had in 4 weeks." To which we all say hallelujah! She was able to "gum" some extra soft noodles in chicken and noodle soup. That made her VERY happy.

And now, for the rest of the news... In the comments, you will see some photos and videos that illustrate just how bad things have been for our dear friend. I'm posting them in the comments because some may be very disturbed by them - and frankly, we all are. But this is her reality. She wants people to know. And she needs our help!

Here's the shortlist:
Awful seizures in her face and neck. Terrible swelling. Numbness in her cheek. Bad reaction to a new medication that caused her to throw up. (I can't even imagine how awful that had to have been.)

The post-operative care from her medical team has been so disheartening and has, no doubt, set back her recovery. They have ordered her to receive palliative care, which should help. She needs to be seen by a neurologist.

PLEASE SHARE THE LINK TO HER GO FUND ME page! It's the single best thing you can do to help her! Please share it with your friends on all your social media platforms and tell people why they should help!

An open letter to the friends and family of Susanne Tolbert. I met Susanne Tolbert m… Lisa Wildman needs your support for Help Susanne Kick Cancer's Ass!

09/08/2023

Hi friends, here's an update on Susanne.

From Lindsey: "She's doing "ok", better than she has been, although this morning was rough. Saw the plastics doc this morning, I'll let her update about the visit itself, not really new information. They don't know, and we need one doc to manage the meds, so they're working on a neurologist and pain management referrals. She just finished with PT and we're gonna work on partial weight bearing and range of motion with her leg."

From me: Susanne asked that I provide a little insight as to the bigger picture. Behind the scenes of us telling you about her physical condition, we have gone minimal on the cluster f**k that's been happening behind the scenes. She's been to the ER twice with virtually no benefit. The second time, the ER doc sent her home without ever conducting a physical exam - even with her neck incision looking raw, swollen, and, in some places, weepy. Her pain has been unmanaged and getting the proper levels of pain meds has been like chasing the end of the rainbow. The responsiveness from medical providers has waned.

And then Susanne's friends got pi**ed at seeing her suffer and we started making some very deliberate noise with anyone who could or would listen. And we will keep on making noise and rattling cages as much as it will take to ensure that Susanne gets the care she needs, deserves, and has every right to expect. She is nowhere near the level of recovery we expected at week 4. The one step forward and two steps back are taking a toll on Susanne's mental health and proving challenging for the friends charged (by choice) with her care. Don't read this to mean that when we get tired that any of us would walk away. Not the case at all. We have assured Susanne and each other we are here for the long haul - for however long that takes. And it is going to take a long time.

We will be looking into various remedies for the various shortcomings in Susanne's care as her progress permits. We all knew this was going to be difficult, for no one more than Susanne. We never expected to need to beg for her pain to be managed properly or to have a doctor basically say he couldn't help and send her home without so much as a kiss on the cheek. We have leveled the beginnings of serious complaints with the system here at the as well as in Denver.

Please continue to keep her in your prayers. PLEASE continue to share the page. Please continue to post messages for her here, and please understand that while she does read them, it's been difficult for her to reply right now. She would love to reach out to each of you personally and in time will do so. Right now, it's managing to get through the day, keep pain in some form of check, rest, and work on a recovery that is slow at best. We will continue to keep you posted. Thank you - Lisa W.

06/08/2023

Hi friends. Here’s an update on Susanne from Lisa Marie.

“Susanne is having a lot of pain in her jaw since going to bed last night. We've been managing it with her medication, but she's been sleeping all day today, and only wakes up to take meds or use the toilet. Hoping a day of rest makes a difference for her recovery.

She wishes she had the energy to respond to everyone's messages and she knows you all care so much. Even if she can't respond or even absorb them all right now, she appreciates them and she will get to them when she's feeling better.

Please keep sending your good energy/thoughts/prayers and love her way 🙏”

04/08/2023

Hello Lover Faces
I'm finding it difficult to update the page. The people I have helping to update the page are findinging it a bit difficult as well. One day I'm doing good and the next I am back in the ER. That's how yesterday went. I was doing good in the AM but found myself back in the ER yesterday afternoon. Pain management is the most difficult thing right now. They cut a lot of muscles, bones and nerves removing the cancer from my neck. The muscles are now seizing in my neck. This is going to take a long time to recover from. Please be patient with me and the people I have updating the page. We are doing the best we can. If you are wanting a personal update, send a msg and I will do the best i can.

04/08/2023

Hi friends. What a difference a day makes! And 12 hours of sleep with adequate pain management meds! Susanne still has a full schedule of doc appts, therapists of all varieties, home nurse visits, etc. but today was much better than yesterday including being able to do her hair and a little touch of makeup for the first time since before surgery. We got to celebrate those little wins!

03/08/2023

Hi friends. Lisa W. here with todays update. Susanne had a brutal pain day and ended up in the ER. She’s back home now and doing better. Simply put, the pain got ahead of her and wasn’t responding well to the at-home meds. They got the pain under control and upped her meds for home. She’s done so well, and I think we tend to set aside the extensive and difficult nature of the surgeries she underwent just 2-1/2 weeks ago. We promise we are all watching out for her and will continue to be there for her even after she doesn’t need us any more. Please remember to share the fundraiser link above. The more eyes that see it, the better able Susanne will be to focus on her healing. We appreciate you all!

01/08/2023

Hi friends! Tonight’s update is from Lindsey. It was a busy and difficult day.

“First day of doctors done - thank god.

Kevin with PT came out first this morning. Just a lot of talking so he can get a good understanding of where we are. Can’t create an in depth plan yet as we still shouldn’t be moving her calf/graft. He gave her some tips and the clear on certain exercises, and will be coming 2x a week for the next 7 weeks.

Samantha (RN - wound care) came out as well. The incision on the right side of her neck (where that awkward drain was) is a little inflamed, so we’ll keep on with twice daily care including a topical antibiotic. She didn’t mess with the leg.

Dr D’s office was brutal. I was focused on Susanne, and didn’t get pictures. The dressing they put on last week had dried out around the edges… it was bad. After a lot of saline soaking, crying, and even some screaming they got it off. They redressed it with LOTS of moisturizer (imagine it’s swimming in Vaseline), and we’ll follow up again next week. Her thigh is doing great - only the sticky part hurt on that one. We have to dress it once more after her next shower and then she can take it off for good 🙂

Some positive notes: she can eventually get laser hair removal in her mouth! No more prickly pear on her tongue. We await the day.

Today was a rough one. 3 appointments and excruciating pain will take it out of you. We’re home now, took meds, and I’ll go pick up more when they’re ready later.

Still a long road, and a harsh reminder of it today. She’s in decent spirits, and hopefully will be in less pain soon ♥️”

31/07/2023

Hello friends! Had the pleasure of visiting Susanne at home today. She has a lot of swelling still in her face and mouth and a lot of nerve pain in her leg. When you take a look at her X-rays you can imagine why. The X-ray of her jaw shows the countless screws that are holding the bone graph in place. The one of her leg shows quite plainly where that new jaw bone came from. But her spirits are steady and she is determined. Starting this coming week, a barrage of medical professionals begin home visits. Nurses for all the obvious reasons, occupational therapist, physical therapist, etc. tomorrow she has a visit in office with her Plastic Surgeon. She’s enjoying coffee and a variety of puréed foods. But most importantly, she is sleeping a lot - something she didn’t get much of in the hospital. When she feels up to it, she’ll come online and post a message. So be patient and keep those good wishes and comments coming. She does read them when she feels up to it! More soon and thank you for your continued love and support. Lindsey is taking extraordinary care of Susanne and thanks for that will never be enough!- Lisa W. ❤️

30/07/2023

Here’s an update from Lindsey:

Hello! Apologies for not updating, been a bit busy over here 😛

Susanne is doing great 🙂 yesterday was the first full day at home, and after all the hubbub from the hospital we both passed out and forgot her early-morning meds until 5:30am. We have everything organized to make sure nothing gets missed again, and seems like we’ve got the pain to a manageable level now.

She ate a lot! We guesstimated about 1300+ calories yesterday, but need to focus more on fluids today. She’s taken 2 showers, ate a whole can of puréed Chunky Bacon Potato Soup, we went for a walk this morning, she’s sleeping through the night and did her own makeup and skin care this morning 🙂

Home health has already reached out - we’ll have 4 departments. RN, PT, OT, and speech therapy. So far only the RN (Samantha) has come out for the evaluation and to schedule future visits. She’ll be here 3x a week. We’ll schedule the rest later.

She is having some nerve pain as things are healing, but hopes to get off the gabapentin soon, as she hates it.

She almost passed out in the bathroom yesterday - about 20 minutes after devouring soup and about 2 hours after meds. It all hit her at once, but I was able to lower her to the ground and get her to bed where I watched her breathe for a while 👀 (sorry, Susanne… she didn’t know that 😂) she was much better after.

28/07/2023

Good morning lover faces ❣️
After 11 long days in the hospital I am finally home. I am exhausted and don't have a lot of strength. I am also in a considerable amount of pain. I would love visitors but will be holding off on that for at least a week.

The recovery is going to take several months. I cant drive because I can't turn my head. Until the graft on my leg heals, I can't walk. I do have a wheelchair and a walker to help me get around. I am restricted to baby food consistency for food because of my tracheostomy. It also has affected my speech.
These are all things that will get better with effort and time. They did find cancer in a small nerve during surgery. The oncology board will meet next week to go over my case. If they do recommend radiation, I have decided that I won't be doing that. This has been a brutal battle and I have to draw the line somewhere. I have no desire to leave this world but quality of life is a priority for me. I feel that radiation would drastically affect my quality of life.
Thank you all for the messages and kind words. You have no idea how much that has meant to me. I will continue to update you as things improve. Recovery isn't going to happen over night.
Time for another nap 🥱
Love always, Susanne

28/07/2023

OFFICIALLY
A CANCER SURVIVOR 😁

But we are not finished yet.Now it's time to recover and get strong again. My body is battle worn this time around and it's going to take a long time to feel "normal". I have months of speech therapy, occupational therapy and physical therapy in front of me. I even have to learn to eat again. My body is beaten up and worn down. I have been cut up from the floor up. I am covered in bruises from all of the blood work and medications. This won't be easy but I know I can do it ❣️
Thank you for all of the support. I could have done this alone but I am so blessed that I didn't have to. Thank all of you so much for the encouragement and energy that you have sent to me over the past 7 weeks.
Please continue to follow this page and share it.
All my love, Susanne

28/07/2023

Hello friends! Yesterday was a busy day and we didn't get to post anything. These are highlights from day 10 in the hospital ☺️

Msg from Lisa Marie
The trach was removed today! Also...She passed the swallow test! She's approved to eat purees and thin liquids 😁Also...
The biopsies came back:
They pulled 31 lymph nodes, they were all clear. No cancer in them ❤️
The jaw bone was also all clear, no cancer in it ❤️
There was one small nerve that a TINY bit (2mm) of cancer had spread to, but it was removed, and Dr Orzell is going to consult the tumor board next Friday for their recommendation as far as radiation treatment, but she personally would not recommend it for this case. Also Susanne says she would refuse it anyways.
There have been some rough points to the day, but overall the news is positive, pretty much the best we could have hoped for ❤️🥳

Msg from Lindsey
Just got home from seeing Susanne. She’s doing well - getting feistier by the day lol
Trach is gone, and she’s enjoying making her neck-vagina make farting noises 😂
New room is cool, view was amazing tonight. Met the night staff - RT & CNA seem great, I didn’t really get a chance to interact with the nurse.
She’s on the first step of her diet. The most texture she can do is baby food consistency.
Making her lists and checking them twice to make sure everything is good to go for when she leaves. The doctor/team should give her more detailed discharge instructions when it’s time

Hoping she’ll be free by Friday!

27/07/2023

Hello lover faces ❣️
My first meal in 11 days
Pureed Chicken Alfredo & Carrots with Pears and Chocolate Pudding
1 out of 5 stars...do not recommend 🤢

27/07/2023

Good morning lover faces❣️
My first cup of coffee in 11 days. It's hospital coffee and it tastes like sh*t but, it's coffee ☺️