Today is a good day.


Joe & I ventured off to my scans bright and early today. I haven’t done full scans (neck, chest, abdomen, pelvis) at a local imaging center before because I also usually have a bone scan, which has to be done at a hospital imaging location. I must usually wear leggings too because when I arrived in jeans today, I was asked to change into scrubs to eliminate the metal button on my jeans. These pants had me cracking up! They had a rather large expandable waistband that tied at the waist and the legs were loose. The pants were actually super comfortable and I could totally sport them. These pictures had me cracking up though – I look so silly! The pants created a good laugh at the start of this long day.

The scans themselves were uneventful. For CT scans, I typically receive them with and without contrast. This means that I often have to drink a combination of water and contrast 2 hours ahead of time, they do a scan without contrast and then they inject contrast into my veins and scan again. When I go to the hospital, I have to arrive 2 hours early and drink the contrast on site then wait the 2 hours. They typically try and schedule the bone scan, which requires its own separate injection, during this time. I just recently learned that when I go to the hospital, I can have the script (for scans) written to have my port accessed. Since I went to a local imaging center today, I had to pick up the contrast last week so I could drink it at home prior to my appointment today. Much more convenient! They don’t have a registered nurse onsite so they had to access my veins for the injection instead of my port. I find it interesting that they wouldn’t train the technicians to access ports. It’s much more convenient, in my opinion.

I asked to ensure the scans were read STAT and my doctor had the results within an hour. Off I went to my appointment there next. I saw the Nurse Practitioner today. There was a rather long wait, which I debated spending on the exam table taking a nap (seriously tempting with how exhausted I am most days) but she came in cheerful as always and spent almost an hour chatting with us. I had a list of questions, which she joked was not unusual. My first question was about my scans. As she pulled them up, I expressed my concerns with progression, why I felt it may be happening and mentioned my tumor markers.

Aside from slight progression in my right neck lymph node and 2 areas of my spine, my scans are stable. Stable! This is such wonderful news!

My right neck lymph nodes showed some activity but it was considered minimal. My spine had some interesting activity that was indicated as stable but not listed on my report from December. My left iliac crest (pelvic bone) is not distinguishable on the exam – that’s right they couldn’t see it! – and my right iliac crest was stable. My lung and liver are clear, though I do have pleural effusion yet again on my right lung. It is already of moderate size and is indicated as also partially against my back, which explains the pretty bad pain that I have.

Stable. Ahh, such a sweet word. Yes, slight progression but overall stability. I’ll take it.

We talked for a while and she talked to me about the possibility of taking Xeloda again but this time combining it with the Afinitor. This is an interesting suggestion and not something that we have pursued. Aside from the pleural effusion, I had a good amount of stability with Xeloda. So perhaps combining it with Afinitor will help eliminate this cancer.

After I left, I headed to my appointment with the radiation oncologist. While waiting in the room, my oncologist called and talked to me more about Xeloda. We discussed side effects of before, that there aren’t a lot of studies about doing it and what it would potentially mean for my cancer. We decided it will be worth trying to see how I tolerate it and how I feel after the first week or two. This should be interesting…

My meeting with the radiation oncologist was good. My radiation wound is not yet fully healed, though it is slowly, ever so slowly, getting smaller. We discussed having the tissue expanders removed and she wanted to talk to the plastic surgeon about it to understand the logistics of that surgery. More to come on that.

So, though today was incredibly tiring, involved a lot of conversations, questions & learning and started early while ending late…it was a good day. A really, really good day. Stable. Ahhh, yes.

…and those pants! 🙂

Yes, my wedding dress is in pieces.

When Joe & I interviewed photographers for our wedding, there was a key task that I wanted to ensure was included in our plan.

A Trash the Dress session.

It would be scheduled for the day after our wedding and the main purpose was the do just that – trash my wedding dress. The photographer that we chose lit up when we asked him about doing the session. He was so excited that he included the session for free. 

Many people have their dresses preserved, or want to pass it along to their family or have other plans. For me, the wedding dress and Joe’s outfit were important and certainly key to our big day but I didn’t have plans for them after that. I absolutely loved my dress- it was perfect. And the fact that I originally fell in love with it in a size 16 and bought it in a 6…well that moment of pride adds to how much that dress means to me. The session itself was incredible and some of my absolute favorite wedding pictures came from that. Even my bridesmaids got involved!

But at the end of the day, it had no purpose. I didn’t even wash it after that day (figured I’d just ruin it) and it had hung in my closet covered by the bag that it came in for the last 6+ years. I’ve toyed with doing different things with it over the years but never actually made any plans for it. Until now.

When I heard that my friend Audrey loves to sew – and is amazing at it – I knew that handing over our wedding outfits to her was exactly what needed to be done. I asked her about it, telling her that I had done some searching but hadn’t found anything that I fell in love with yet (wait…another Pinterest solution fail?!). I suggested maybe a blanket to pass along to Jacob but that I had no vision in mind and she agreed, getting excited about the possibilities. 

I handed her a bag filled with my dress and Joe’s attire folded nicely inside of it. We were standing outside of a restaurant where we had just enjoyed lunch and she looked at me. “Are you sure you want to do this?” I smiled, “Absolutely!”  I continue to get more and more excited about the blanket just thinking about the possibilities!!  Audrey even asked me what our first dance song was, so she could listen to our song while she began working on it.

I have no plan or thoughts for this blanket, I simply know that it is in the right hands.

She wrote a bit about the experience here:  Sew Sew by Audrey Perrott

My jam! …and my reasons.

Today, church talked about all pain having purpose. Whether or not we see it or feel it or even understand it – the purpose is there. Whether the pain is physical or emotional pain, the purpose is there. There have been a lot of things happening recently that have given me pause and caused me to stop making excuses and instead make changes in my life. Any obstacle or excuse that I have found has been, quite literally, alleviated before I even had a chance to concern myself with it. I cannot help but see that God has a plan and a purpose, even if He isn’t showing it to me yet.

I’ve mentioned previously that scanziety is very real. Whether you feel great or crappy, there is always a fear when scans approach. Even as recently as December, my doctor was 80% sure my scans looked stable and then – POOF! – cancerous fluid is present, and I didn’t have any symptoms. I’ve been through quite a few scans over the last year & a half – some have been great and others, well, not so much. One thing that I’ve learned is that I cannot change the outcome of the scans. I can only change my perspective of them.

So as tomorrow’s scans quickly approach, I decided that it’s better if I share how I feel physically. I think this will help me to better prepare myself for any news that may or may not come. It is not helpful to worry unnecessarily or spend time fretting about what may or not be. I need facts, conversations with medical professionals and to remain calm. That being said, scans are always something that I try to turn a blind eye to because I don’t want to spend too much time or energy thinking about them beforehand.

I pulled up my tumor markers yesterday, from Wednesday’s blood work, and saw that they were elevated. You may recall that they dropped back on January 5th – which had me jumping for joy. Unfortunately, they are back up again…and higher than they were in December when I stopped Xeloda. My CEA is 16.3 and my Cancer AG 15-3 is 26.7. Yuck.

When I saw my oncologist back in the beginning of January, he had shared that even if my end of January scans showed progression (depending on how much), that he may not change my treatment yet because typically new treatments take 10 – 12 weeks to be in full effect. I don’t know whether or not the fact that my tumor markers were initially lower will factor into that. I imagine that my scans will play a significant role in that decision as well.

I will say that my lungs were full of cancerous fluid when I had my blood drawn – over 1700 ml of it…enough to warrant a procedure to implant a permanent catheter. I don’t know if this matters in terms of tumor markers or not. Perhaps Afinitor doesn’t have the opportunity to work fully on my cancer because it can’t keep up with the fluid build-up in my lungs. Who knows – I don’t even know if that makes sense medically. 😉

Some parts of my skin look significantly better, such as two of the areas above and below my radiation burn that have been quite painful since September. Both areas appear to be healing, which they haven’t done much of in the past 5 months. My skin lesions, on the other hand, aren’t looking as good. They don’t look a whole lot worse, mostly just redder and perhaps one is big enough for a trial now (it may be slightly too small still), but also there seem to be just a couple more than there were a few weeks ago. There weren’t any new ones popping up initially – which was fantastic. That may have changed.

The lymph node on the right of my neck that was previously swollen – and then disappeared – seems to be venturing back into my life. My jaw also suddenly hurts when I yawn, so I’m not sure whether or not that is from Xgeva or a cancerous node.

So that’s where I’m at. Oh, and I’m tired. My platelets have suddenly risen (another concern of mine that Afinitor may have stopped working) so I can’t blame them for my fatigue. It is on my list of questions for the Nurse Practitioner tomorrow though. It doesn’t seem to be getting better, despite my numbers changing.

I’ll admit that when I first saw my tumor markers yesterday, I was a bit distraught. It was the one thing that I was holding onto that would tell me all of these other things could be explained away. Seeing that they had jumped, and higher than December, hurt. A lot. Frankly, I was angry. I can’t catch a break with treatment! My cancer is just too dang smart – it keeps mutating to beat out any chance of it dying off! Why do I keep trying when cancer just continues to win?!

Yes, I was yelling – mostly at the Universe. At that moment, a new song came on the radio and Jacob yelled “This my jam!” and put both hands up the air to dance along while singing to the music. I took a deep breath and smiled.

This is why. Right here. Jacob, Joe…my family, my friends. This is why I continue to fight. This is why I don’t let progression or tumor markers deter me. This is why I will unearth every possibility for treatment that I possibly can in order to live out every single moment of life that I am able to. These boys, these are my reasons.

I may not know what God has in store and I may not know what the future will bring but what I do know is that I am meant to be here now, in this moment. I will not waste my time worrying or being angry about this cancer. I won’t waste my time concerning myself with things that I cannot control. Instead, I will stop, change course and redirect. Because that is the only way to move forward.

Organizing Help!

Before Jacob was born, I was in a pretty decent nesting kick. All of the things around the house that were on the “someday” list suddenly became “must dos” and I was on a roll. Over one weekend, I cleaned out and organized all of my cabinets & drawers in the kitchen and the bathroom. They were nice & neat – it was wonderful!

Fast forward about three years and though my storage solutions are still in place, they aren’t quite as tidy as they once were. My latest battle is the bathroom storage. As you know, I’m on a decluttering kick and trying to eliminate a lot of unnecessary things from my life. Couple that with all of the medications and medical supplies that I need, along with all of the supplies that will soon become a regular event with the PleurX catheter, and there’s just too much.

So, I’m turning to you for HELP! I am looking to organize under all of my bathroom sinks (2 bathrooms but 3 under sink areas). In addition to the normal stuff such as lotions, hair products, cleaning items, makeup, tooth care, shaving items, travel toiletries, band aids, sunscreen, baby items, extra shampoo/conditioner/soap, etc., I also have a lot of medications. Not just day-to-day things, which I store separately, but others as well. My insurance requires that all daily medication (even if still testing out the amount), must be bought in 90 day supplies so I have quite a few bottles of medications. I also have lots of products for wound care related to my radiation burn (still not healed) and I keep all of my essential oil supplies here as well. Draining the PleurX catheter will require a station of its own supplies so I need a space to store those items as well (oops, need to add purchasing those supplies to my to-do list too!).

Add all of that together and there just isn’t enough room! I am sure there is a better way to organize things so here I am asking for help. J I’ve been scouring Pinterest and I’m surprised to say I have not found many fabulous ideas…it’s not often Pinterest doesn’t come to my aid.

What tips and tricks do you use for storing all of these different items? Is there a certain way you like to organize things? I saw stackable storage containers on Pinterest – are they the best way to store things to maximize space?

Feel free to share pictures! Any and all ideas are welcome. I am quickly running out of time before surgery and would love to have everything organized before then since I won’t be able to move my right side a whole lot at first. Thank you!

My room. 

I started thinking about new year’s resolutions a few weeks before 2016 ended. I had a few things in mind…not so much resolutions but things that I wanted to change in my life.  Time slipped by and these got away from me a bit. I kept meaning to implement these changes or make progress on them but it was never at the top of my list.  The last few days, I was reminded that time will always continue to pass. I will always find an excuse or a reason not to fit something in or to change priorities. If I don’t implement the goals that I want to see, then who will?  No more excuses.

I looked at my goals for 2016 and for the most part, I was successful in the things that I was able to control. Being re-diagnosed with Stage 4 doesn’t necessarily change my goals but it does change the perspective that I have when making them. A lot of things that popped in my head are changes that I’ve been wanting to make anyway and just haven’t gotten around to it. So wrapping them up with a pretty green bow and calling them 2017 Goals is the way I’m incorporating them into my life.  It is Chinese New Year today, after all! 😊

One of the goals that I set for us is my One Line a Day book. Another is sleeping routines.

I was gifted these books by two different ladies at the end of 2015. They are 5 year journals but you only write a few lines for each day. It’s usually something memorable that happened or something fun that we did. Or maybe we had a visitor or Jacob did something I never want to forget. I’m pretty good about keeping up with them, though sometimes I fall behind and I’m struggling to remember what funny or special thing happened a few days ago. Having a memory that is failing does not make this an easy task. One goal this year was to include Jacob in these entries each day. He’s talked about it before and I’ve asked him what to include but I wanted it to be something he looks forward to each night. Since it’s a new year, this time when we open the book to a new day, we have last years entry to read. It’s exciting to reminisce on what we did this day last year or where Jacob was developmentally. 

One of the comments that filled almost every day for the first week of the year was about Jacob sleeping in his own bed. Nap time, bed time – even sleeping through the night! My goodness, it was going so well last year – what happened?! Radiation in April/May, that’s what. Halfway through and I was too exhausted for middle of the night wake ups or hour-long (and then some) bedtimes. Coming into our bed in the early morning turned into halfway through the night, turned into barely an hour in, turned into “Bedtime, Jacob! Hop in between Momma & Dad-dad.” The rest is history. 

I love Jacob sleeping in our bed – I do! He is such a good snuggler, he hugs me for no reason and, well, there is nothing quite like waking up to his smiling face telling me good morning (“it’s not too dark!”). But he often wakes up before he should because Joe & I are getting ready for the day. Or he goes to bed too late because we are finishing something up before bed.  For those reasons and more, we felt like it was time to try his bed again. 

We have been talking about it with him a lot, especially when we were on the cruise and going home to his big-boy bed. But we haven’t made any actual attemps yet. So this afternoon when Joe asked him where he wanted to take a nap, we were both surprised that his answer was “my room”.

It took a while, a walk around his room, lots of snuggles and some singing but it happened. After some ninja moves to leave the room, we were shocked that he slept for his entire 2 hour nap in his bed. Dare we try bedtime too?!

Since Jacob was in my tummy, I have wanted to start reading him different book series at night. Many are books that I’ve been wanting to read and others are from my childhood. I visited a used book store at one point when he was only a few months old and bought treasures just for that. They have been patiently waiting in his closet since, for me to look at every time I opened the door.  

Hours before bed, we started to tell him about our new routine. We continued to prepare him all night. When his jammies were on and his teeth were brushed, we asked him where he was sleeping tonight, “my room”.

And so it began. We laid in his crib and I read the first chapter of Harry Potter to him. He was fidgety at first, rolled around a lot, talked to his animals as well as himself…and eventually fell asleep. I don’t know that he actually listened to the chapter at all but tonight was priceless to me. 

Eventually, I want to record myself reading to him but for now, we have completed the first of many nighttime readings that are still to come. 

Here’s to 2017 goals!

Rallying for Red Phoenix – April 1st

As you may know, there is a fundraiser being held in my honor on my birthday! It is being thrown by incredibly kind friends & family who are jumping high with hands raised to see how they can help. You all are AMAZING!!!

There was a Save the Date sent via a Facebook invite on my IamRedPhoenix Facebook page. As of yesterday, we have a venue!! A restaurant near work (to be shared soon) has asked to donate their space for the fundraiser! Joe & I used to frequent this location for their happy hour pre-Jacob and it has been one of my favorite places for years for happy hour, date night, dinner with friends and even a dear friends baby shower. They have a room off to the side so that we will have our own space, there is already a musician just for us AND it’s less than 5 minutes from daycare!

We are working out the details and will share them as they come!! The exact time should be confirmed soon but the day is definitely the fabulous date of my birth – April Fool’s Day! This awesome night of fun will be an opportunity to come support my family and me, as well as celebrate my 33rd birthday!

The night is sure to be AMAZING and beyond MEMORABLE! There will be awesome raffles, games, prizes and MORE!!

Jacob’s school has graciously offered to open up their site for the night! Every teacher at his school has generously volunteered their time.  Parents will be able to drop their children off at The Learning Experience during the fundraiser. The kiddos will have a night of fun playing games, doing arts & crafts and maybe even a movie! The times will align with the times of the fundraiser (more to come). If you have questions or would like to sign your child up with TLE, you can call or email them. I’m also here for any questions or concerns. 😊

We have received half a dozen raffle items already! If you would like to donate a raffle item or know someone / a store who does, please let me know – the more, the better!

I’ve received questions from people who want to help with the fundraiser – whether it’s day-of help or prep work before. If you’d like to help, please send me an email at IamRedPhoenix10@gmail.com I’ll be sending out an email to all volunteers this weekend to discuss details.

A new page has been added to IamRedPhoenix.com called Give. You can donate any amount or use this page to donate for a wristband. Oh – and the wristbands are available in adult or children sizes!

This fundraiser is a reminder of how incredibly blessed I am. No, this cancer diagnosis & prognosis are not awesome. And yes, I have been in pain for a few weeks. But none of this can be helped- I simply want to embrace and enjoy the moments that I have. Being able to celebrate my birthday surrounded by friends & family is one of the most amazing blessings that I could ever receive.

Hopefully we will see you all there on April 1st!

Today was not awesome.

The medication that I take at night for my chest pain certainly helps me to be more comfortable but I still wake up like clockwork every 4 hours. Mornings are the hardest. I assume that’s because I’m moving around more and my body doesnt love that just yet. I’m grateful for some relief even though it’s not perfect.

I had my platelets checked today prior to my procedure. They jumped up to 139! Though that is quite literally the lowest “normal” number, it’s still within normal range. This is exciting, though I can’t help the thought that crosses my mind next…could that mean the Afinitor has stopped working already? A quick search & Dr Google let me know that a side effect of Afinitor can be that there is a sudden temporary drop in white blood cell or platelet count. I’ll take that as a good sign! I have scans Monday that will give a status update also.

Next I headed over to the procedure. I had lots of questions, of course, and she was already armed with answers and suggestions before I even asked. The thoracentesis was started right away like before, except this time it hurt…a lot worse. The one I had before vacation was a bit worse than the first one, which I assume has to do with the fact that my body is expecting the procedure to some degree.

The doctor was just getting ready to start draining my lung when a sharp pain started. It was on the same side but only hurt a little on my back where the catheter was and hurt like crazy in the front. I recoiled without meaning to and repeatedly asked her to stop doing anything for a moment. Tears fell before I could process them and I grabbed the pillow in front of me as hard as I could. I knew that I needed to slow my breathing since I couldn’t breath very well from the start and the quick, sporatic breaths weren’t going to help anything. I slowed my breathing and my tears. The pain subsided after a few seconds and the doctor was able to begin draining my lung. 1700 milliliters later and we were done.

The doctor indicated that it’s called referred pain. Basically, it’s pain that shows up in an area different from its actual source. I assume that the catheter may have hit a nerve going in that wasn’t numbed. This caused my body to react to the pain but in a different area of my body. She explained that internal nerves are quite different than external nerves, like skin. It’s actually quite common that something will hurt internally in a location totally different than the source. This can also be partly to blame on muscle memory. After my last thoracentesis, I had significant shoulder pain. It was sharp and hurt quite badly but eventually went away. This was likely the same thing. A procedure was done internally on my lung and chest but the pain was felt elsewhere.

The doctor also indicated that the pain will continously get worse with each procedure because of scar tissue, muscle memory and even brain memory (apparently your brain recalls pain better than anywhere else). Obviously the pain was bad today and will only get worse for the next procedure – which will likely be within the next week to a week and a half.

Her suggestion was to have a PleurX Catheter put in place. It’s a “permanent” catheter that would be placed on the right side of my body and access the pleural space around my right lung. It would be similar to the drains that I had after my mastectomy but much smaller & lighter. I would leave the drain attached inside of me, roll up the drain and tape it to my side.  Initially it will need to be drained about 3 times a week. A home health nurse will come to my house in the beginning to show me & Joe how to do everything. Once we are comfortable (what would I do without this man in my life?), we will be able to do the drain ourselves. I will continue to see the doctor periodically to discuss the frequency of the draining, the amount and the catheter itself. It will remain indefinitely. An outpatient surgery is required in the hospital so that I am put to sleep and the procedure itself is done in a sterile, controlled environment.

The other option is to have a pleurodesis performed. There would basically be an irritant put around the pleural lining of my lung so that my lung sticks to the pleural lining, therefore not allowing any fluid to form. This is a relatively invasive procedure and would require a hospital stay of a few days, at minimum. It also requires that there is no fluid in my lung at the time of the procedure.  Since there is such a significant amount of fluid forming in my lung regularly, it is not likely to be the best option at this point. In the future, once the fluid begins to form less and I can reduce my drainage amount, it will be a good option.

So, tonight I rest. I still have pain in my chest, what I now know is called referred pain, as my lung learns to re-expand again. In the next day or two I will receive a call to schedule this surgery. I’m sure there will be lots of phone calls to make and plans to (re)arrange. But for now, I rest with my sweet boys and enjoy a lung full of air. ❤

I would like to give a special thanks to a fellow breast cancer warrior. She helped talk me through her experience with pleural effusions, thoracentesis, PleurX and pleurodesis. She took time to give me details in the day to day living with these options and helped me to understand what to expect. I am grateful for such wonderful people in my life. ❤