Happy Wednesday!

Hello, world!  It’s been a busy week already and we’re trying to get back into the swing of things after a long time away from home.

So I showered today. I know what you’re thinking – “p-uuuuu!” (is there a proper way to spell that?). But nope, I’m not stinky – I actually showered instead of taking a bath. Yeah!  Some of our travels didn’t have baths so a shower was required. It’s been months since I’ve showered because of radiation burns and though I still have one open wound and it was a bit painful in the shower, it was awesome. The ability the wash my own hair, stand in the steamed up shower and feel the warm water drip down my back…oh, so wonderful.

Oh, and my port can now be used!! This is SO awesome too! No more arm pokes. 😊

My radiation oncologist (RO) thinks my wound may be healed within about 2 weeks! Say, what?! I know that’s wishful thinking but the idea that I won’t have to change bandages every 3 hours, have to apply a special lotion every night and have consistent pain in the center of my chest…well, that’s quite exciting.  We’ll see – but that’s what I’m aiming for! And being healed means that I will finally be able to have surgery and that also means that I’ll be able to have MRIs.  All of these things are actually super exciting!

I also saw the neurosurgeon, who reviewed my actual brain scans and agreed that everything looks stable, which is also great news to hear. I’ll take that!

Today I saw my oncologist and we had a long discussion about treatment. We discussed an old school standard triple negative chemo treatment called CMF, which is an option and appears to be quite tolerable and effective, however it is IV chemo.

Afinitor is still an option but he is not entirely sure that I’d be able to get it covered by insurance, which is a whole other story. Since internally everything appears to be fine (if not better), it makes sense to continue Xeloda until I have internal progression or my skin nodules become larger, concerning or unbearable. My blood was drawn today and I’ll have my tumor markers in a few days. I am anxious for that, as they have been a pretty good indicator of whether or not I have internal progression. Aside from that I am on the low end of normal blood numbers but still within the good range for chemo. I am slightly anemic…anyone have a home trick to get that number up, aside from eating red meat?

In the meantime, I have spoken with the oncologists at the Mayo Clinic and MD Anderson, both who agreed that continuing Xeloda is the best course of action for now. MD Anderson discussed that while I have progression, it isn’t significant enough to stop treatment yet. Aside from discussing Xeloda, the Mayo Clinic actually has a Phase 2 trial for the same drug that MD Anderson & Emory are testing. Apparently that drug is the hot topic right now! 😉 She has the same concern regarding measurable disease causing me to be ineligible for now.

As my local oncologist referred to it, I am “treading water” for now. I’ll continue Xeloda, have scans every 6 weeks to ensure that nothing is missed and *hopefully* in a year or 5 from now, I’ll still be treading this water and staying on the current course. For now, it feels right and hopefully it will stay that way for a long time!

Have a wonderful Wednesday night, everyone! 💚

Thanksgiving…

I have been thinking about traditions and blessings today. I read my post from last year and couldn’t help but smile at the traditions we share and Joe’s first Thanksgiving with my family. I remember many Thanksgivings, though many meld together in one happy memory.

I remember my dad making popovers every year and if they didn’t come out just right, he would try again…and again…and again. We would often have a few dozen popovers half risen before dinner. I recall the first time that I made popovers for Joe and, though he thought me crazy at first since he had never heard of them, he enjoyed them so much that we ate them for dinner with gravy all by themselves for about a week straight.

My mom’s mom would always make fresh made biscuits from scratch and would let us grandkids cut out the circles. I remember being propped up on the counter or standing high on a stool while she rolled out the dough and showed me the best places to fit a circle.

I remember the first year that I sat at the “adult” table at my dad’s sister’s house and felt a little sad that I wasn’t at the kid’s table. The next time I sat at the kid’s table.

I made green bean casserole for Joe’s family one year and somehow managed to mess that up despite it being the canned kind. I have since learned to make it from scratch and that seems to come out alright.

I know how proud I was of Joe when he cooked our first turkey in our home. We hosted his parents and were determined to make it perfect. It was perfect because we were blessed with family by our side.

Opening the windows and letting in the beautiful fall breeze wasn’t an option in New York. But it’s something that I have grown quite fond of in Florida. The year that we served appetizers on the back porch while watching the birds play in the yard is one of those times that I was so grateful for Florida weather.

Pecan pie was always a staple in our house growing up. I would typically stay up late the night before with my dad making two pies for the next day. We made two this morning too.

One year at my aunt’s house, my cousins and I were jumping on the bed (a no-no) and I heard my older cousin come in from work and say “I need caffeine!”. I had no idea what caffeine was but I was parched from all that jumping and needed some. I expressed that to my parents, aunts and uncles upon walking downstairs and they looked at each other and laughed, knowing I had no clue what it was. I drank my water and smiled, oblivious to how big of a role caffeine would eventually have in my life!
When my baby sister ventured to Florida for her first Thanksgiving a few years ago, the Brown-Hall-Rivers-Thanksgiving-Extravaganza began. We have celebrated together each year since, taking turns between our states. Though this year was Florida’s turn, we were anxious for fall weather and with all of our recent travel, Georgia made sense. I imagine this is a tradition that will not ever end.

When Jacob was born he sat at the head of the table and we made hand turkeys on a table runner with him each year. It’s a new tradition that I love so much.

This year, we were surprised with wrapped gifts on our plates. Our brother-in-law has a family tradition of receiving a new Christmas ornament from his mom every Thanksgiving. This year, the three of us were blessed with this wonderful treat of a tradition – one that I may have to begin myself!

As I write out these few memories that make me smile and warm my heart, I cannot help but think about how blessed I am. This time last year, I was mid-IV chemo and completely bald. It seems like a lifetime ago and yet just the other day. This year, I have my family by my side as we celebrate this holiday and create new traditions.

As I see all of the smiling faces and delicious meals on social media, I smile at all of the wonderful traditions that surround us. We are so blessed to have the most amazing people in our lives, incredibly lucky to be here to celebrate this day and so loved as we acknowledge the lives that we have lived so far.  There have been many memories created and there are still so many to be made.

I hope you all enjoyed this holiday with your loved ones and snuggle them hard tonight. Happy Thanksgiving, my friends! 🦃❤

Measurable disease

On our drive from Texas to Georgia, we had an unexpected stop that took 4 minutes. Though inconvenient, it was necessary. Once we started driving, we barely made it a mile or two when we saw break lights and swerving in front of us. We were on a two lane highway at night and slowed to an almost stop. We passed an accident that had just occurred. No police or ambulance were even on the scene. There were 4 cars involved (everyone appeared ok) and one of the cars was sideways in our lane.  The accident, the time of day and the angle of the car was terrifying. Joe & I looked at each other in disbelief. Had we not stopped unexpectedly, that would have likely been us. A blessing in disguise that I cannot get out of my head.

We met with the Phase 1 Clinical Trial doctor and nurse practitioner today. After a history, record sharing and blood work, we discussed trials. There are 4 trials that are options, two of which are immunotherapy and two targeted treatment options. One trial in particular is specific to triple negative breast cancer. I qualify based on my disease and history…and yet I cannot currently participate (therefore don’t currently qualify) in any trials because I do not have enough measurable disease. The skin lesions that I have are not large enough (1 cm) and my bones cannot be used because the lesion size would not change because it would stay the same size despite shrinking cancer.

He left an email with my Emory oncologist but his recommendation is to either continue Xeloda or begin Afinitor until I have progression that is significant enough for a trial. He also suggested a chest xray prior to any treatment changes for a baseline to ensure any new treatment is working. I asked about relocating for trials and he stated that the 4 that I would have qualified for would not require relocation. The first month would be regularly required visits but then treatment would be every other week or monthly, recommending a drive or flight versus a move.

This is challenging to hear because I have cancer yet not enough. This disease is present and slowly taking up residence and yet it’s not aggressive enough (despite its aggressiveness). But…

I don’t feel discouraged. Actually, I feel a bit the opposite. I feel slightly more encouraged mixed with a bit of happiness. Now is not the time. I have always been a believer that everything happens for a reason and I cannot help but believe that this is quite literally one of those times. These trial options are promising but now is not the time for me. And I’m ok with that.

I am not yet healed from radiation and at some point I will heal and have these dang tissue expanders removed. This is likely a surgrey that cannot happen  while on a trial. These are things that need to happen before beginning a trial.

In terms of treatment, I am tempted to continue Xeloda until I have internal progression. Yes, I have skin progression but it’s liveable. It doesn’t hurt or itch and despite them popping up here and there, they are apparently quite small. I am hesitant to begin a treatment like Afinitor when Xeloda seems to be doing something inside of me.

So, I will continue to have faith that the right treatment will come at the right time for me. And all will fall into place.

Enjoy this week everyone. It is the beginning of a season filled with family, fun, laughter and memories. Embrace every moment!

MD Anderson

I’ve never seen such a massive center. Having visited quite a few cancer centers in the last few months, I’ve seen my fair share of buildings. This one was massive. I was in the Mays Clinic building and at one point, I had to walk to the main building. I used the sky bridge – which takes you over traffic outside – and I kid-you-not, it took me at least 10 minutes just to walk the bridge. There’s even a shuttle to take you across! It was very nice. Anyway…

I liked this doctor a lot. A young gentleman with a toddler himself, he enjoyed chatting with Jacob and was very candid with me. I enjoy candid when it comes to cancer. I need it. 

We talked about my visits with the different centers, which he very much supports, and he said something that I thought very highly of. When I mentioned what the other the centers had said (clinical trials are the way to go), I also stated that I did not make a decision yet because they are the number one cancer hospital. He looked me in the eye and said that it isn’t the center and status so much as the trials available. Are the trials something to get excited about? Then go for it.

So they do have one trial (potentially two) for me. It is an immunotherapy trial (I am very certain it’s the same trial that Sloan wanted to test me for but I put that on hold). It is “promising” but not exciting, in his words. The other trial is not quite as promising for me (PARP indicator, which is a targeted therapy, currently used on BRCA positive patients, but may work on TN without that mutation) but an option nonetheless. Immunotherapy is showing great promise in other cancers but hasn’t had significant progress with breast cancer yet. This trial is still in its early stages (Phase 1) and because I am triple negative, immunotherapy has the potential to work for me.

I expressed my hesitation with a Phase 1 trial (still determining dose toxicity, side effects, etc) and he agreed but said not to be deterred simply because it’s a P1 trial. Most times, they have been proven to work in other cancers and they have reason to believe that it would work on the one being tested on (in this case, triple negative breast cancer). So it is not necessarily a first on humans drug (though that is certainly a question to ask). This particular drug also pays a small travel related expense, which I understand to be extremely rare. It’s also weekly chemo initially, so relocation would be likely…assuming a strong response (big assumption and hope there!). It also is worth mentioning that trials provide access to drugs that are not FDA approved. So if they are in a trial, there is reason to believe that they are “good” drugs with the potential to target cancer. I wouldn’t have access to these drugs if I did not participate in a trial. There is also the potential that the drug would not work, which would be a risk and a reason to stop a trial. Regular blood work, scans and doctor/research coordinator visits are required aside from actual treatment. Trials are labor-intensive.

The doctor also mentioned that I should  not have started Xeloda if I want to get on a trial soon (I do) because of the wash out period. He also said that he would not have necessarily stopped Xeloda when I did because of skin progression. Yes, it’s progressing and a systemic therapy is required, however it is not likely 100% progression and since it is working great internally, he likely would have kept me on it longer. Interesting, right?

Side note – I am staying on it for now, until I know what trial that I want and what the wash out period is. This will also give me time to prepare for wherever the trial is located.

The doctor had a lot of great advice and comments. One thing that makes me incredibly joyful is that he said I am in the infancy of my treatment regimen. He rattled off many standard of care treatments for my cancer and said that any of those are all viable options when I am ready (aside from trials). I cannot express how happy I am to hear that. I had thought that my standard treatments were only 2 IV chemo after trials and am so relieved to know that I have many options left. Many of those are IV chemo, however they are there and ready when I am.

We talked at length about quality of life. I don’t talk about it a lot here, however it is a conversation had at home often and something that doesn’t leave my mind. Many of these trials have unknown side effects (particularly P1), as well as the potential for significant travel expense. In his words, this is not something to go bankrupt for and the quality of life gained from continued treatment is important to recognize.

Going through chemo initially last year, I had obvious down days (weeks, really). I fought through to enjoy the good weeks. After surgery, life slowly returned to a relative normal while I got used to long term side effects. As I continue down this path of life-long treatment, I am beginning to recognize my new self. It’s harder to get up from bed, often a sit to get my head straight and stretch my body so it doesn’t ache is required. Stairs make me more tired and winded than ever before. Joe helps me up when I squat or sit at Jacob’s level. I’m tired most often. I am still healing from radiation and the pain that I have from the open wound is not like anything I have felt before. It hurts, continuously, and often keeps me up on nights like this. My feet ache more often than I would like and I have stomach pains after most meals that sometimes require me to sit still until they go away. I don’t share these side effects because I want to make a spectacle. I am simply sharing my new normal. Things that didn’t bother me before but sneak  up on me now, whether because of treatment or metastatic disease. The idea of quality of life is very real to me and I understand why he feels the discussion must be had. There may come a point when treatment becomes worse than the reward.

So for now, I will embrace my sore feet and aching body and continue on with life. I will enjoy these days that I am blessed with and not roll my eyes and push off the tiny hand that is covering half my neck (along with the little body snuggled up against me in slumber).

This visit was informative and I am glad that it was possible. I am meeting with the clinical trial team at Emory on Tuesday as well. Since we were headed there for Thanksgiving, we are going a day early to meet with them and discuss trials. The doctor at MD Anderson is anxious to hear what trials I may qualify for there as well. I plan to share with him what I learn and look forward to his honest assessment and recommendation, as well as the doctor’s at Emory who I very much liked as well. 

I know there is more to share somewhere in my head but that’s all I can think of for now. Saturday we head to visit Waco, which I am crazy excited about. Who doesn’t love Fixer Upper?!

Organizing?!

I’ve been taking a manila folder full of documents and an envelope full of scans to every appointment. A separate notebook with sporadic notes and my usual organizational skills were out the window. I’ve been slowly fixing that as I gain more and more records.

First, I took one of the plane rides to organize my files and put sticky notes on top indicating what each one was. Then I put them in date order. That made me feel much better until my folder became way too full and I couldn’t locate something at the Mayo clinic. She was the first (and not the last, ironically) to recommend color coding with stickies.

So I took my notebook and used small, color coded sticky notes to keep everything aligned by location and subject. That in itself was super exciting! I can now find things easily based on the color/note on each sticky.

So then comes the dreaded folder. I’ve had this free organizer from the American Cancer Society for…dare I admit it…months! I’ve been dreading organizing everything but knew it was necessary. Knowing I couldn’t locate something Mayo wanted, I set out this morning to organize myself. I filed pathology, scans, doctor notes, etc all in separate tabs. The worst part? By the end, everything barely fit! I still had to use my folder for a few miscellaneous notes. Sheesh, guess I have too many records. 😐

So, although I am organized and ready for MD Anderson today, I will need a new, bigger, folder when we head back home!

Off to MD Anderson we go…wish us luck (especially our first appointment with little man during naptime…eek! Hoping Mickey Mouse and a lollipop will keep him entertained!) 😉

Day 1 down!

Our first day of travel to MD Anderson is complete! We decided to drive because plane tickets were outrageous for the 3 of us. And who doesn’t love a good road trip?! Jacob did great and a book on tape kept things interesting for me and Joe. 

We spent the night in New Orleans, which is farther than we intended to drive. It was a fun (and early) evening. Now to go enjoy some of this city before we hit the road again!

P.S. This time change is no joke, Jacob was up at 530! 😩

A kind soul lost

My last regents class was chemistry in 10th grade. I dreaded this after my earth science experience. In lieu of standard desks, we sat at high top tables. Our lab partner sat across from us. On the first day, the desk across from me was empty when I arrived. It filled before the bell with a girl that I knew through mutual friends but wasn’t currently friends with. Truth be told, I was intimidated. She was smart, beautiful and outgoing. She spoke her mind and laughed infectiously. She was now my lab partner and I was scared that I would slow her down.

That year and that class turned out to be one of my favorites. Her & I became fast friends and our chemistry (see what I did there?) during that class was awesome. We laughed at our goof-ups, studied together to pass tests and helped each other on our homework assignments. Something that scared me at first turned into a blessing in disguise. I couldn’t have asked for a better lab partner. We have since lost touch but I remember distinctly how she helped me through those days – especially with her laugh and smile.

Her mother was diagnosed with triple negative breast cancer a few years ago. Through a random circle of events, I found that she had posted on The Underbelly (I recognized her name immediately!), which gave me the confidence to do the same. I learned through a mutual friend that she had been visiting Dana Farber for treatments and reached out immediately. We chatted about our experiences and she invited me to be a part of a Facebook page that she was in, one that she thought I would also benefit from. She was incredibly inspirational, funny and so kind. She accepted me immediately and offered advice, support and her sweet words. I instantly fell in love with her and everything that she exemplified – as a person, a woman and a fellow breast cancer fighter.  I am honored to have called her my friend.

This morning, I learned that she passed away in her sleep. She fought hard past the life expectancy and survived around 46 months. Despite scans that looked good sometimes and not others, she embraced all that life had to offer. She didn’t let anything hold her down or back. When it became difficult to walk, she used a cane or a wheelchair to ensure that she did not miss out on making memories. Her positive outlook and loving spirit drew people into her and made her so easy to love.

I did not have the privilege of meeting her in person but I knew her daughter. And I know that she instilled that same infectious laugh and genuine kindness in her too.

You will be missed, Lynn. Enjoy those purple sunsets and watch over us all until we one day meet.

Letters for the future

I love letters. Just like my love for books, letters will never go out of style for me. There is something so wonderful about giving and receiving something hand written, that someone took precious time out of their day to sit down and write out just for you. I love it.

I’ve written before about my love of letters and how I’ve turned that into a new tradition for Jacob. I write him cards and put a dollar or two (age appropriate funds to match how old he is) in each one. I usually mail it (I love it being post marked) and stick it in a box for him to read when he is older. I did this when he was in my belly, mailing him Christmas cards filled with our dreams and hopes for him.

Today, I went to a local party store and bought…a lot…of cards. Birthdays, wedding, graduations…you name it. At only a dollar a piece, it was a deal for nice cards but also added up quick. I had to remind myself that I can’t write everything.

My intent is to write cards to Jacob for these very special occasions (and some everyday occasions) that he will one day open. As I stood in front of those cards, my mind filled with the words that will eventually be scrawled all over them…from me to him. Am I doing this with the hope that I will hand them to him? Absolutely. The reality is that there will always be words left unspoken and thoughts that are not expressed.  Terminal or not, I am glad to be doing this for him. Tomorrow is not guaranteed and I want him to know the wishes that I hold in my heart for him.

And besides, who doesn’t enjoy looking back and reminiscing about words spoken long before that still ring true today?

Decisions, decisions…

It’s hard to believe that it’s been just over 3 months since I had a craniotomy. Just over three months since a rogue cancer cell took off running towards my head, fought against all the healthy cells and snuggled into my right cerebellum to make a home. Although only a few centimeters big at the time of surgery, I had already been experiencing horrific headaches up my right neck and above my eyes. The fear of another stray cell making a home in my brain will always be a very real fear for me.

In October, I had an urgent brain CT because of headaches and dizziness. Thankfully that came up clear and the headaches have since resolved. I’m still dizzy when laying down and moving my head to the right or if I stand too quickly. This Tuesday, I had my brain scanned again in preparation for my Gamma Knife follow up with the radiation oncologist today. I am relieved that once again, my brain scan came up completely clear. It’s likely my inner ear causing the dizziness.

My appointment today went well and, assuming nothing crazy happens in the meantime, I don’t need another brain CT / follow up for 3 months – WAHOO!!

The nurse oncologist called me Tuesday after the brain scan to let me know the good news and to talk to me about treatment options. I visit MD Anderson next week but I haven’t been on treatment since October 18th when I stopped Xeloda. My skin is not improving but still looks relatively good (considering), internally I am stable, and actually quite a bit better than I was back in July. My lymphatic system is resolved and I have 3 relatively small spots lighting up in my pelvic area. My shoulder did not appear on the bone scan, though it’s possible there is stable cancer there or it’s possible it has resolved.

So I essentially had three options for treatment. I continue with no treatment while awaiting MD Anderson. The risk is just that – no treatment. When I visit MD, my assumption is that it will be a visit like the others but that they would also test me for clinical trials and see what I am eligible for. I would not actually start anything for (potentially) a few weeks / months.

Option 2 is to start Afinitor. This is a chemo pill and showed up on my Foundation One testing as an option for one of my five mutations. It is typically used in estrogen positive breast cancers, which would make the insurance coverage a battle. My oncologist would need to “sell” my case to the insurance company to try and obtain coverage. This could take a month or so. Often times, centers that have clinical trials have an easier time obtaining coverage for drugs like this since they have trials on their side, so to speak. It would be considered a second line of treatment, which would potentially eliminate me from certain clinical trials. This being said, it is also a treatment option that I can utilize at a later time, in the hopes of it working.

Option 3 is to go back on Xeloda. I have skin progression that started while I was on it previously but it was working to keep my internal progression in check – if not helping to resolve it. It would not be considered a second line of treatment since I had used it previously. I would lose my washout period, which is required for clinical trials, however since I will likely only be assessed next week at my visit, I will have time for a washout period once I know what trial I am eligible for. It’s possible that I find out that I’m eligible for a trial that has a 2 week washout period but that it won’t actually start until January. That would be quite a long time without any treatment since October, considering it would only require a 2 week washout.

So…it’s been a long week. After conversations with my nurse practitioner, my local oncologist and a whole lot of soul searching, I decided to restart Xeloda yesterday. I don’t want to risk a second treatment right now, although I like the idea of a chemo pill option again. It’s nerve-racking to not be on any treatment. Although I feel reasonably ok, there could be cancer cells dancing around my body making home where I don’t want them to be. It was not an easy decision to make but it had to be done. Here’s hoping my body decides Xeloda is the one for it and all of my cancer resolves, skin included. 😉

Aside from that, my skin is very slowly healing from radiation. Crazy to believe that I’ve literally been healing for 2 months now and I healed fully within 2 weeks before. I still have an open wound on my chest but it’s a little larger than a quarter now (crazy how much pain that small spot causes!!). The other smaller spots that were healing have scabbed over and are healing at their own pace. I know Xeloda will once again slow the healing process, and frankly I am OVER radiation burns, but it’s a risk that I need to take.

That’s my medical week, I think. Jacob is on his first round of antibiotics since last December. He came down with a wicked cough and a fever. This is the first time that we have given him Tylenol and not had his fever resolve almost instantly…it was quite nerve racking. He is slowly feeling better, thankfully, and the antibiotics are working their way through his system.

I hope you are all enjoying your week and this month of November. Rest up this weekend, enjoy time with your loved ones and continue to spread that love!!

3rd grade…

When I was in 3rd grade, we had a class president. One particular month, I was nominated along with another girl. When it came time for the class to vote anonymously, it came out 50/50 for us. We voted another 2 times and the results were the same. Our teacher said we needed to think hard about who we wanted to nominate and ensure it was who we believed in for the month.

We had already voted 3 times and the results were unchanged. Both of us were capable of the role for the month. I decided to vote for the other girl. Part of me thought that she may do the same. Either way, we were both deserving and willing to accept the role.

The class voted and the results were in…49/51. My vote change mattered enough to elect the next class president. I was partly sad at not winning and partly happy that my vote had the effect that it did. It was interesting to watch the class reaction, as everyone was quick to express their thought one way or the other and in awe of the fact that one person changed their thought.

Interesting, huh?