Sister weekend

I grew up with 3 sisters. We did not always get along – we absolutely had our fair share of fights. We shared rooms, sometimes beds, we had 1 bathroom and drove each other batty more often than not. But we were there for each other. Three of us were know as “so-n-so’s little sister” or “little B”. We had our moments of being close and not so much but we were always there for each other…and we always will be.

A few weeks back, my big sister asked in a group chat if we could have a sister weekend. I agreed, expecting it to take some time, thinking it was a pie-in-the-sky idea. When she suggested a weekend that was around the corner and looked up plane tickets, I knew she was serious. We all figured out the logistics and set everything in motion.

Our first ever sisters only weekend was on. My three sisters traveled to me, I snatched them up at the airport and we headed to my happy place – the beach. We stayed at a hotel where every room had a balcony facing the beach and where we were only steps from the ocean. Though Friday was windy, we bundled up and made the day fun. The rest of the weekend weather was pure Florida perfection. A slight breeze cooled the day while the sun shined brightly over our heads. Though the sun set early, the moon, stars and even a planet lit up the sky above us.

We spent the weekend having major belly laughs, swapping stories of the past, encouraging each other about future decisions and snapping photos on our disposable cameras (cannot wait to see how they come out!!!) We seriously laughed until we all cried, we walked arm in arm along the beach looking for shells and the four of us snuggled up on the two full beds and watched one of the movies we grew up watching (Labrynth – which just happened to be on TV last night!!).

We haven’t always gotten along, we all are guilty of “borrowing” each other’s clothes and I’m pretty sure we have annoyed each other at some point. But we are sisters -through thick & thin. This weekend was a wonderful and needed reminder of just how much we mean to each other. I don’t know what I would do without my sisters. They each offer a unique and inspirational perspective to me. I love them all so much.

Here’s to the next Sister Weekend!

“It’s Christmas!”

christmas-120116Growing up, we had one Christmas tree in our house. It always stood in front of the picture window facing out towards the street, for all to see. We would even rearrange our furniture if a couch or chair was in front of the window when we were setting up our tree.

When I moved to Florida, I learned that multiple Christmas trees in a home is quite common. This was the first that I had heard of it and over the years I’ve loved watching people have multiple trees in their homes that had different themes. It was like Christmas in every room – something that seemed so wonderful to me.

This week, we took Jacob to pick out a tree. Every year with him is fun and I love sharing traditions – new and old – with him. But this year…oh, this year is so wonderful. At this age, he is understanding and asking questions and making his own…fun in the world! We went to pick out a tree and he walked up and down the aisles, arms outstretch and head turning side to side saying “These are nice! Look how nice!” It made me laugh & smile & tear up all at once. He had a ball “hiding” in the trees and got very excited as Joe pulled out different ones to see which Jacob loved. Oh, it was all so wonderful.

After we had chosen a tree, we started to make our way up front towards the registers. To our left, we spotted mini Christmas trees. Jacob immediately ran up and started picking up the different trees because they were his height. They were so cool!! I don’t remember ever seeing “little” trees like that before and we couldn’t pass them up. Jacob picked out his own tree out and even helped carry it to out.

We typically put the big tree in front of the bay window because I love that it can be seen through the window. It causes such a beautiful blue and white glow. But we spend most of our time in the tv room, which is decorated but doesn’t typically house a tree. So, Jacob’s tree solved that dilemma! His tree fits perfectly in the room and helps to create the Christmas feel.

When unpacking the box that holds Christmas ornaments last night, Joe found a cd. Upon seeing it, it made my heart swell. Half a lifetime ago, my uncle used to make Christmas cd’s for us every year. It’s filled with the classics and he would make a new one for every year. With 10 brothers and sisters and tons of nieces and nephews, this wasn’t an easy task for him. But he did it without complaint every year and we would always listen to it in the car driving around upstate New York to get in the Christmas spirit. Joe immediately popped it into the cd player while we decorated the tree. We sang, we danced and we spun Jacob around to the music. He giggled & smiled & even picked out his own ornaments to help decorate his little tree.

When we were all done decorating the trees and the cd was over, it was time for bed. Despite that fact, Jacob refused to take off his Santa hat. The little munchkin fell asleep with it on. I can’t think of a better way to end November and start off this wonderful holiday just right.

As Jacob says, arms outstretched, “It’s Christmas!”

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!) 😉