New MRIs

Hi Dear Friends,

I'm about a week late on this post, it's been a busy week!

First up, about those scans- Sheree had a full set of MRIs last week.  Brain, cervical, thoracic and lumbar were taken, and over all the results are.... BETTER!  Dr. Conrad (NeuroOnc) said that the disease isn't retreating as quickly as he'd hoped, but that things are trending in the right direction.  Dr. Conrad thinks the disease has only been kicking around in there for a few months, but it was aggressive and there was a lot of it, so he's not surprised that it's taking a while to back down.

Below, you'll find a picture of her lumbar spine.   November 30th is on the left, February 1st is on the right.



Her spinal cord is less inflamed, and you can start to see some individual nerves (as Dr. Conrad explained, on tail end of the cord in the picture on the right). So the treatment is working, and for now, Sheree will continue with more of the same- twice weekly intrathecal injections of Topotecan. Aside from some pretty intense nausea and her tastebuds not functioning properly, she hasn't experienced too many annoying side effects from this treatment.

Here are some other images, although I can't really explain what you're seeing.  The bits of cancer are tiny, and only someone with 2 mortgages worth of education can read them.  But they look neat.  Basically, you can see how it's possible to have brain cancer, with no obvious tumor.


Sheree's cancer is of the meninges and it circulates in her spinal fluid. The stuff on her spine and brain are like tiny gold deposits in water- they collect in the crevices and hang out there.  Only they're not sparkly and worth thousands.  They're probably the color of monsters and they cost a lot of money.  Thank goodness for Medicaid.

The cancer is composed of her original breast cancer cells.  All it takes is one straggler, apparently. Something they didn't manage to catch with a double mastectomy, radiation and chemo back in 2009. Too bad cancer fighting robots haven't been FDA approved yet.

Despite this, her oncology team feels confident that they can get a good handle on it to give her much more time than the research indicates.  This is a good time to remind you all that without a little luck and everyone's incredible amount of help, we may not have gotten treatment fast enough to prevent permanent damage.

Next, the systemic chemo.  Sheree has been on the Ibrance + Letrozole combo for 3 weeks now.  The most frequent clinical side effect is a drop in white blood cell counts (impaired immune system). Luckily, her white counts looked great at the last blood draw. WINNING! So far.

Letrozole is an aromatase inhibitor (AI) that essentially blocks estrogen production.  She was on Arimidex, another AI during her original bout with breast cancer, and it made her achy and severely depressed.  Really, the depression was crippling.  Unfortunately, she's already seeing a bit of the same with Letrozole.  I currently have her tracking her moods to find times where she feels good so that we can try to replicate the influencing factors for those days/hours.  In the mean time, encouraging words and time with friends are things we know help.  Mom is getting a crash course in self-care.

We have an appointment with Dr. Patt tomorrow, where we'll talk about how to handle this.  I've done enough research to know that this is a very common side effect for some, so hopefully the doc will have some assistance.

Other than that, things are business as usual.  I'm trying to find a volunteer opportunity for Sheree, because sometimes having something to think about besides fighting cancer might be a nice distraction.  If anyone has any good ideas, send 'em my way?  Maybe once a week, flexible, social.  Something like that.

Thanks for checking in!


Love,

Kelly

My Big, Fat Week Update

Prayer, luck, or kismet. Call it whatever you want, but with a lot of hard work, some incredible friends, and a little je ne sais quoi, THIS MOVE IS DONE!

From moving off the wait list, moving things from and to, getting set up in the new place, and leasing the old place, everything has moved at lightning speed!

We experienced our fastest, most efficient move ever with Sharon, Susan, Jan, my husband Evan and our friends Jenny, Joe, Bryan, Keith, and Luke, and extra help from BCRC volunteers Lorraine and Beth. Extra thanks to Dianna and Phyllis from the Breast Cancer Resource Center for facilitating the volunteer pool.

Many people gave up their entire Saturday to get this thing done. Mom and Megan are all set up in their new first floor apartment, with a much more manageable rent amount. There's also a pool, and a calendar of free fitness classes!  Foundation Communities is a fantastic organization, so if you know people in need of affordable housing in Austin, send them there.

A few other updates:

Stability and Mobility: The imminent danger of Mom losing her ability to walk appears to have been addressed.  Her 5 weeks of radiation were completed last week, and she has gained significant strength and stability in her legs.  Her weight has stabilized, too.  The "bulky disease," pressing on her cauda equina responded well to the radiation.  We don't yet know if there will be any more laser beams.

Today, she went for a physical therapy evaluation.  Net result: 3x weekly exercises to increase leg strength, stay on the walker until otherwise stated.  These are home exercises, so no extra appointments to add to the calendar, yay!

This can't be said enough- the walker is a MUST.  Sheree can walk 3 minutes without the walker before fatigue and poor balance create a fall risk.  Next month we try for 4 minutes. According to Dr. Patt and now the Physical Therapist, fall prevention is imperative.  Any serious injury could derail the entire treatment plan.

Intrathecal Chemo (The Frankenbubble):  She is on week 2 of 4 of twice weekly Topotecan treatments. Saturdays are still the worst, Mondays are still the best (Hello, opposite world!).  This makes sense because she's had Friday, Saturday and Sunday to get it out of her system.

Injections will continue for 2 more weeks this way, then she'll be down to 1 per week for 6 weeks, then 1 every other week for 4 weeks, then 1 a month, probably forever.

I haven't really addressed this in a while, but Sheree's cancer is metastatic, which means she will likely be in some kind of treatment for the rest of her life. May Topotecan always be her CSF cancer guard dog.

Systemic Chemo (Pills and Injections): You know things are intense when Dr. Patt says "Yeah, we'll need to get your bone and lymph mets handled, but first let's radiate the spinal and brain enhancements from December's MRI."  So now we handle the bone and lymph mets.

Tomorrow we go to her Chemo Teach, where she'll learn all about her next regime.  A brand new drug called Ibrance, combined with Letrozole, is expected to attack the small bone and lymph mets seen on her PET scan from last month.  She will also receive an IV infusion of Zometa, which is a bone strengthener.  The duration of this part is unknown right now.  I think the goal is until the mets can't be seen on PET or MRI.

Next Up:  Dr. Conrad (NeuroOncologist) has ordered a new set of MRIs of her brain and cervical, thoracic and lumbar spine.  That is scheduled for Thursday night. Everybody cross your fingers & toes, and pray/talk to the higher power of your choice that this set comes back looking cleaner than the last.

The application process for Social Security Disability seems to be swimming along.  We are now in a 5 month waiting period for benefits to begin.

Needs:  I don't even have words to express the gratitude and humility I feel for the stunning amount of help we've received.  The meal crew, Phyllis and Cathy, have made and continue to make beautiful, healthful meals for mom and I'm planning on teaching Megan how to recreate them soon. Angela, Terri, Darla, Susan, Megan and Ryan have patched together an incredible network of rides that has had mom present and on time for each and every appointment.

I'll talk to Mom tonight to see if there's anything else, but at the moment we don't have any new needs. I still might put a call out for rides if the regulars have a conflict.  If you want to hang with Sheree, and if she's up for it, give her a call or take her to lunch, etc.

I think that's everything for now, thanks for checking in!

Love,

Kelly

Moving plans

Hi everyone! Ok, here's the final plan:

**SATURDAY UPDATE: 4 of the guys and trucks will be at mom's at 9.  If others can't come until 10, that's ok. We'll just get a jump start.***

Sharon will be at mom's by 9am on Friday to pack. If you're available on Friday, head on over to help pack. If not, we'll still make sure it's all done for Saturday.

Saturday at 10 is moving time. We have 3 trucks and at least 4 men to help with the big stuff. Anyone else who comes will be loaded up with boxes and we'll need assistance unpacking them at the new place 4 miles away.

Mom had a rough day yesterday with lots of nausea and little to eat or drink.  Probably because it was the day after her second treatment. She does two treatments again next week, the second one being on Friday, so I'll probably send her to my place on moving day to hang on my couch with the dogs to minimize her stress unless she wants to stay.

If you think you'll be able to help (or Dianna, if your volunteers are available) please let me know when you can come so that I can get a headcount. Please forward this info to anyone that I might have missed.

Thank you all for everything you do for mom! ❤⭐

Friday update

Hi! Just a few updates:

1) Mom went to her chemo appointment today, where they told her that the CSF fluid they drew is "less dense," with cancer cells than the one they drew earlier in December. Yay for cancer poison!

2) She and Megan are approved for the apartment, also yay! This is bittersweet news, as they love their current place, but it's a good move all around. We are planning to move next Saturday. We have help lined up, but if you have a truck or strong arms, we're accepting all we can get!

3) We went to the social security office yesterday to apply for SSDI. It looks like the process will move pretty quickly because of her diagnosis, which is excellent news. I can take off work to take her back in for a Monday morning appointment, but if any of her friends have the time and know how to go to that with her instead, let me know.

Happy Friday everyone!!

Love,

Kelly

Chemo Day 1: All Done!

Mom had her first chemo appointment yesterday, and she said it was a breeze!

She had a bit of a headache last night, but otherwise has felt pretty normal. My dog Popeye dropped by to give her a little canine therapy. 

Since Dr. Patt cleared mom for physical therapy, I'm on the hunt for a physical therapist in South Austin who will take Medicaid. If you know of one, send me a name please!

Here's a video of the infusion, thanks to Terri Michelle for being our videographer!

http://www.youtube.com/c/TerriMichelle78627

Also, no news yet on the apartment but I will let everyone know as soon as possible! Thanks to those of you checking in.  

Email list, Google Calendar, Meals and Rides

Hey everyone!

I'm trying to put together an email list and add anyone who wants to be added to the Google calendar.  If you have a gmail address and would like to be added to the Google calendar to see Sheree's appointments and sign up to drive, please use the contact form on the right side of the page.  Or contact me on Facebook to send me your address.

The Signup Genius for the Rides and Meals calendars are still active reposted down here but the rides change weekly, so I'm thinking this might be easier.

To recap: There is a meals calendar, and a rides calendar, but if you want the latest information on appointments and such, it will live in the Google Calendar. You must be added to the Google calendar manually by me, but you can see it at the bottom of this post, or on the right side of the blog.

Here is the meal sign up. Also! We're giving her lots of green juices daily, so deliveries of raw cucumbers, celery, ginger, lemons, and carrots are gladly accepted any day.  No need to cut or wash, straight from the store is great!
www.SignUpGenius.com/go/30E084FABAF22A6FE3-meal 

And in case you missed it, here is the rides calendar. Mom should not be driving right now, and Angela has taken the bulk of the pick ups while Megan is doing most of the taking, but this is a great opportunity to spend a little time with her and help give the primary drivers a day off.  I'll be adding appointments on a weekly basis, so if the coming week's are taken, just check back later in the week for the following week's appointments. 
http://www.signupgenius.com/go/30e084fabaf22a6fe3-appointment




Thanks!

Kelly

Happy New Year! 1/2/2016

Whew! It's been a while since I've updated, sorry about that! It's been a very busy few weeks filled with appointments and holidays and surgery, oh my!

We had so much fun on Christmas! Sheree ate and laughed and watched Elf with Megan, my husband Evan, and me.  Then she went to visit Ryan and they went to a movie.  She said it was exactly what she wanted. <3

Sheree had neurosurgery this past Monday to place her Ommaya Reservoir and Dr. Tumu said she did great! She was up and eating and walking only hours after the surgery.  She spent the night on the Neuro floor of Brackenridge (In a corner suite, fancy!) just for observation, and then they released her the next day.  She's got a cute new haircut that covers up her "frankenbubble," as we lovingly call it! Pics soon. 

She also had a pesky tooth that needed to be pulled (OUCH!) before we could start chemo.  Big shout out to Terri Michelle who ran her all over town for two days getting that done. As expected, mom sailed through that as well with minimal pain.  

She's using her walker, but appears to need it less and less each day, as radiation seems to be helping with the neurological symptoms that had caused her so much unsteadiness and weakness.  Dr. Patt cleared her for physical therapy, so we're hoping to stay with the walker until a professional evaluates her fall risk and says she doesn't need it.  ALSO!  Mom has gained a few pounds thanks to her hard work at eating enough good foods, even when she doesn't feel like it.  The meal crew has been a great help, extra thanks to Terri Michelle, Cathy, Phyllis, and Rachel!

She'll need those pounds to get through the next round of Cancer Fighting.  Chemo starts Tuesday, just as radiation tapers off. She'll have twice weekly chemotherapy into her Ommaya for 4 weeks, then once a week for 6 weeks, then every other week for 4 weeks.  Dr. Patt says she'll probably need to do systemic (IV or oral) chemo as well for the mild mets seen on her spinal bones and lymph nodes.  We don't yet know if that will be concurrent with the intrathecal injections. Then, there might be more radiation.  We will find out about that from Dr. Nuesch next week.  Sheree is keeping her head high and has some great support to get through this next tough part. 

Angela, Megan, Susan and Terri have been absolute rockstars at getting her to and from appointments, this would not have been possible without them.  The latest research says that chemo patients being around babies is no big deal, which is great because Angela has a beautiful toddler named Aubrey that comes along for all the rides.  Still, that decision will have to be up to Sheree, Dr. Conrad (the radiation oncologist) and Dr. Patt (her primary onc).  I also expect to be permanently working at my Austin facility by 1/18 and will definitely be pitching in for rides, too. 

We may also call for backups in the event that anyone gets sick on a day when they were planning to be around her. It is still flu season, y'all.  If you have the sniffles, keep 'em home. :-)  I'll update the rides/visits/meals calendars accordingly. 

Lastly, we are keeping our fingers crossed this weekend as we await the approval of her application for a new place to live.  Moving amidst everything else won't be any fun, but she's looking forward to having a first floor bedroom again and the rent is much lower in the new apartment, which means she can take some much needed time away from work and thinking about bills.  Sharon has been helping us get organized and ready for a move when the complex says we're good to go. 

Thanks for checking in, and please call or text any time.  Mom is usually pretty sleepy in the afternoons/early evenings, but she's a night owl, and somehow also an early bird these days too and would love to hear from you.  

Love,
Kelly

PS- One final note. At this time, we are not asking for donations. Caring bridge seems to have several popups asking for Tributes/Donations.  While you are welcome to contribute, please know that the money goes to CaringBridge for site maintenance, not to Sheree.  I'm also not crazy about the CaringBridge layout, so I have moved the updates to a blog page, bluebonnetsandbubblegum.blogspot.com 

Sheree Update and Meal Calendar 12/12/2015

Sheree update and Meal Calendar

By Kelly Stidham — Dec 12, 2015 2:31pm

Hi Everyone!  Just a quick update on Mom. We appreciate all the phone calls and the outpouring of love and support. Please know, she feels it and it's helping her strength to fight this.  She's feeling ok today, just a little tired and achy from radiation. The numbness in her feet is mostly gone, (yay steroids!) but she's still weak and a little wobbly.  She's in pretty good spirits, but could always use an uplifting text or phone call, or a visit if you have time. 

She's 3 radiation treatments in, and as soon as we get approval for Medicaid (hopefully this week), she'll be going to the neurosurgeon to schedule placement of the Ommaya reservoir to get her started on chemo.  We have another MRI scheduled this week to assess the "spots," seen on the previous MRIs around her thoracic and cervical spine (again, Medicaid pending, as mom is currently uninsured). 

Chemo and radiation at the same time are going to be rough on her body, and we need to be extra careful that she's taken care of in the weeks to come.  The cancer has zapped her appetite and is actively telling her not to eat or sleep, so those are our main priorities while we let the doctors do their thing. Megan lives with her, and I'm checking on her daily, but if we don't remind her to eat she can become malnourished very quickly. 

On that note, I've created a meal calendar for those of you who are interested in cooking. Don't worry, we're feeding her well, but cooking can be time consuming when there are so many other things to be done. Every slot doesn't have to be filled, they're just there so that people can help when it's convenient for them.  

Here is the meal sign up. Also! We're giving her lots of green juices daily, so deliveries of raw cucumbers, celery, ginger, lemons, and carrots are gladly accepted any day.  No need to cut or wash, straight from the store is great!
www.SignUpGenius.com/go/30E084FABAF22A6FE3-meal 

And in case you missed it, here is the rides calendar. Mom should not be driving right now, and Angela has taken the bulk of the pick ups while Megan is doing most of the taking, but this is a great opportunity to spend a little time with her and help give the primary drivers a day off.  I'll be adding appointments on a weekly basis, so if the coming week's are taken, just check back later in the week for the following week's appointments. 
http://www.signupgenius.com/go/30e084fabaf22a6fe3-appointment

Love,
Kelly and Megan, Ryan and Sheree

Rides Calendar

Hi there!  Please find our rides calendar here: www.SignUpGenius.com/go/30E084FABAF22A6FE3-appointment 
Meal calendar to come!

Cancer Sucks, Part II

First, my apologies to any of you who know mom and are finding this information out here for the first time.   This last week has been an avalanche of phone calls, appointments, and arguments with insurance providers.    

For the past few months, mom has been experiencing leg weakness and numbness, balance disturbances, and several other concerning neurological symptoms.  Many of these symptoms were present in subtle forms after chemo and radiation for her breast cancer in 2009, so they were not immediately troublesome until they continued to worsen.  Her oncologist ordered an MRI last Monday, and last Tuesday we were told that there were areas of enhancement or lesions on her brain and spine.  

This week, it was confirmed that those enhancements are a metastasis of her original breast cancer, diagnosed in 2009.  We were also told that breast cancer cells were found in her cerebro-spinal fluid.  Neither of these complications are curable, but the doctors believe they are treatable with a reasonable quality of life.  So welcome to Part II of Cancer Sucks, Sheree edition.  

Mom has held up really well through all the doctor's visits, financial arrangements and phone calls. She's really been a trooper.  She is to start radiation today at Texas Oncology with her original team of oncologists.  Today we were also told that delaying radiation by even a few days could result in permanent paralysis or worse, based on how quickly her disease has progressed.  So far, her only treatment is a 5 week course of daily radiation to her lumbar spine and head to relieve her neurological symptoms.  If radiation goes well,  she may then begin intrathecal and possibly systemic chemotherapy.  Aside from neurosurgery to place an Ommaya reservoir, which will deliver chemo to her ventricles, we don't expect any other invasive surgery in the near future. 

There are still a lot of unknowns at this time, and I will be using this site to update everyone as much as possible, along with phone calls, text and e-mail.  There is no definite prognosis. Some patients have weeks, some have years. We won't know how much time we have until we see how she responds to treatment.  


What do we need right now?

Meals: 
Mom has not been eating well lately and I will need help getting her good greens and proteins.  If you are able, I would appreciate any meal assistance we can get. A big pot of turkey chili here, or veggie based casserole there would save us time and energy.  There is good evidence that improving her diet by eliminating sugar and processed carbs, and adding greens and vegetable proteins will support the clinical treatment efforts.  If anyone has a juicer sitting around that they would like to donate, we would love to put it to good use. 

Rides: 
Thankfully, mom has a number of people around to help, including my sister Megan, Brother Ryan, close family, and Dianna from the Breast Cancer Resource Center of Austin.  Due to her neurological changes, it's best that mom avoid driving as much as possible. Megan will be taking mom to radiation, and my best childhood friend Angela has graciously offered to take mom home from radiation every day around 1pm, however any volunteers wishing to run relief efforts would be greatly appreciated.  

Other: 
Despite the outpouring of support from our little circle, I'm sure we will need more help in the days and weeks to come.  I may use this site to ask for some of those needs.