Red Phoenix Rises

On Saturday March 25th 2017 our Sweet Red Phoenix left this earth to rise high above it for her next role. We don’t always understand why things work out the way they do, but the Red Phoenix community is strong and her legacy lives on through each of us. The overwhelming support and strength this community has shown is a direct reflection of just how powerful words are. This blog was started as as an outlet for Meghan to share the most intimate details of this journey and it ended up providing strength to so many including her family. With every journey there are milestones that must be reached in order for the next new journey to begin. Red Phoenix was always a huge advocate for organ donation and we have recently learned that two cornea donation recipients will be able to see the beauty of this world through Phoenix eyes. This is the next journey for Red Phoenix in this world and there are many other paths she will take outside of it. Hug your families close and live, love and laugh like you have never before. We don’t know what this life has in store for us, but we do know it is not the end. We will all eventually rise for our next journey just as the Red Phoenix has risen from the ashes for her next role. 

Until next time my friends…

TBTC

The Rally for Red Phoenix celebration will be held on her birthday 4/1 at the Marriott in Lake Mary, FL at 6pm. More details can be found at the I am Red Phoenix Face Book page.

https://m.facebook.com/IamRedPhoenix

Reality

Sometimes the reality of situations we have to deal with on this Earth just simply stink. There is no sugarcoating them.  Yes, we can see the many blessings and comforts from God that happen through these situations, however those don’t necessarily take away the emotions you feel.

Here is our factual reality right now.

Meghan continues to be uncomfortable, well, let’s call it what it is….she is in pain. The doctors are doing a diligent job trying to manage her pain.  She now has a PCA (Patient-Controlled Analgesia pump)  which allows her to push a button to have a dose of pain medication released  whenever she needs it (no more than every 10 minutes) in addition to what she is getting through her  IV.  This has seemed to be helpful for her.

She will not be able to eat or drink anymore and therefore a feeding tube of some sort is needed. We made an attempt with a feeding tube that runs through her nose today.  I will spare you the details, but it was awful and did not work out the way we had hoped.  Tomorrow Meghan will start to receive some nutrition via her IV, however this will not necessarily satisfy her extreme hunger, which is concerning.  It is heartbreaking to hear her constantly ask for food and water and not be able to give it to her.

Meghan got to spend time today with her parents and sisters, which made her so happy.

And here is where it gets harder-

Yesterday Joe and I met with Hospice. We are realistic about where this situation is heading.  Our families #1 priority is for Meg to be as comfortable as possible for the rest of her time.  Once the pain management is under control and the other Pleurx Catheter is inserted, Meghan will (hopefully) get to go home and be in her own bedroom.  The thought of her being able to watch T.V. while snuggling Jacob in her bed brings a sense of peace.

One of the programs offered by the hospital provides support for families with young children. A Child Life Specialist visited today to help Joe and Meg come up with a plan for how to help Jacob cope with what is going on.  She was simply amazing.  She provided a list of activities that Meg will do (with our help) to leave a legacy behind for Jacob.  She brought toys in for him to play with while he visits.  She also brought a canvas and had Meghan make handprints on it for Jacob to have.  The idea is that Meg will come up with words of wisdom for Jacob and we will write them on the canvas.  Are you crying yet?  Whoever invented a program like this was clearly being used by God!

Again, thanks for everyone for reaching out and praying for Meghan. I don’t know how to respond when people ask how they can help.  The only thing that comes to mind is to please comfort our family.  Reach out to my mom, dad, and sisters, I know that they can use someone to talk to.  Joe’s parents have been so helpful with Jacob-please pray for strength and peace for them.

Most of all pray for peace for the Hall family.

Another Quick Update

The CT scan showed that Meghan has a large amount of fluid around her lungs, which is most likely causing the shortness of breath. Her Pleurx catheter is located on the right side, which is allowing her right lung to be drained, but not the left. Yesterday her left side was drained and they will continue to monitor the amount of fluid they need to drain on that side to determine if inserting a Pleurx catheter on the left side will be necessary as well.

Meghan has had a swallow study completed to assess why she is aspirating when she eats/drinks. The results of this showed that she will need some sort of rehabilitation before she will be able to eat or drink again. In the meantime she will need a feeding tube so that she has proper nutrition. The Palliative team came in and put a plan in place to better manage Meghan’s pain, which has been the main focus right now. They have changed/adjusted some things and we are hoping that these changes give her some relief.

Meg seemed to sleep a little better yesterday, which is good.

Again, we are so thankful for everyone praying boldly and reaching out. We let her know that everyone is praying and asking about her. I know she appreciates this. We also know that a lot of people would like to see Meghan right now. Due to her discomfort and the emphasis being on rest as much as possible, Meghan’s visitors have been limited to immediate family only. Please feel free to send messages, cards, texts, etc. I promise to let her know. Most importantly, please pray specifically for her comfort and peace.

Thank you,

Sarah

An Update

This is Sarah, Meghan’s older sister. With Meghan and Joe’s permission I am writing an update. So many people have been calling, texting, and messaging to check in on Meg-and we could not be more grateful for that. For the record, I do not have a medical background at all, and I rely heavily on my sister to translate these kinds of things. Since she is not up for the task of breaking everything down for me, I am left to write down my understanding of what is going on.

So here is where we are at:

Meghan has now been in the hospital for a full week. She was admitted last Sunday experiencing debilitating headaches that kept her in bed and unable to eat, drink, or talk. While the pain she is experiencing has not subsided, we have begun to receive some answers regarding what may be causing the headaches and other symptoms she now has. A spinal tap a couple days ago revealed that Meghan has cancer in her spinal fluid, which has traveled to her brain. The protocol for addressing this new finding is to begin radiating her entire brain every day for two weeks. This was supposed to start on Saturday (yesterday) however the development of some significant mucus and liquid in her lungs has left her unable to breathe well. Due to the fluid, lying flat for a prolonged period of time (which the radiation would require) is not something Meghan is well enough to accommodate right now.

It was hoped that Meghan would be able to have a CT scan of her lungs and Pleurx Catheter today to see what is going on in her lungs and surrounding arteries. Unfortunately her veins were not good enough and they could not get an IV in to do the CT scan. We are waiting for a PICC line to be put in tonight and will (hopefully) be heading down shortly for the scan. The doctors are thinking that she probably has pneumonia, which is causing her shortness of breath. The scan will reveal if this is true and if she has any pulmonary embolisms.

Once we receive the results of the CT, we will have a course of action to help with the lung and breathing challenges and therefore Meg will be able to begin radiation to her brain.

Meg is definitely uncomfortable. Talking is very challenging for her, although that is not stopping her from trying ! The doctors continue to work on combinations of medication to manage her pain.

Jacob and Jackson came to visit Meghan this afternoon, which put a smile on her face. Joe continues to take such wonderful care of Meghan. She is a loved woman.

My apologies for the late post…

It’s been a long week post surgery. The surgery itself went quite well and frankly, I felt wonderful for the remainder of that day and most of the next. Then the weekend came and it was back to the insane headaches that leave me in tears in bed for days. I finally decided through gritted teeth and tear stained cheeks that it was time for a hospital trip. It’s not that I thought cancer was taking over my entire body but something has to give with the way that I’ve been feeling lately. 

Joe called my oncologist and spoke to him Sunday. As it turns out, my nurse practitioner was doing her rounds at the hospital that we were planning to go to so she was able to set up all of the admissions paperwork and initial consults for me so that there wasn’t any waiting around and I was guaranteed a bed. So, a bit of light packing later while Jacob finished a nap and we were on our way. I won’t lie, the ride there was horrible and the idea of an ambulance each way quite tempting but I thought better against it. We dropped little man off with Grandma (he was a little too quick to say good bye to us and go play) and went to check ourselves in.

We’ve only been here since Sunday night but I had my first official brain MRI with tissue expanders removed – wahoo!! I had a breast MRI when initially diagnosed to confirm tumor placement but that’s all folks. A brain MRI was exciting and nerve racking to finally have done. And guess what? It’s ALL CLEAR!!!  That’s right – I said it – ALL CLEAR!! TOTALLY STABLE FROM ANY BREAST CANCER IN MY BRAIN!! How awesome is that?! God is good, my friends. God is GOOD

Now, that doesn’t quite tell us what is causing the headaches – the horrible, debilitating headaches – but it does tell us that it’s not from a tumor in my brain. Hallelujah!
There is talk about wanting to do a spinal tap / lumbar puncture to grab a sample of the spinal fluid to be tested for infection or cancer. There is also the possibility of the headaches being a side effect of taking Afinitor or Afinitor mixed with Xeloda. So for now we are taking a break from those to see if it helps. Basically, we are trying a bit of everything to see what helps…which I’m ok with because of how unbelievable these have been!

We have received an incredible outpouring of love and support over this last week – even when folks didn’t know what was happening in our lives. We can’t thank you all enough for every drop of that LOVE!!!

Almost all of the crosses that have been ordered have already been shipped and received – I’m just LOVING the pictures showing up of them, keep them coming! Please send me a message if you think you should have received yours by now and haven’t.  💚

I’m not entirely sure when I’ll be released but I anticipate being behind on life a bit when I am out. I also know I’m behind on responding to texts, emails and messages so I am sorry already for that. I appreciate your patience as I work to get caught up, though it will take time. I feel like “relaxing” in the hospital should be just that….but it’s not. I spend the day covering my face from these insane headaches, trying different combinations of medications to to stop them, figuring out what to eat  without vomiting and trying to sleep in between. Blech.

Thank you for your continued prayers, support and love. 💚💚💚

TNBC Awareness Day

Today is Triple Negative Breast Cancer (TNBC) Awareness Day. Until late last night, I didn’t know there was such a day – and part of me can’t help but wish there was no need for it.

Honestly…I don’t have any words for this day or this disease. Triple negative means just that…the cancer is negative for the 3 “typical” hormone receptors that usually feed breast cancer – estrogen, progesterone and HER2-NEU. As you may know, I was (barely) HER2+ when initially diagnosed as Stage 3, which is why I was treated with a certain standard chemo treatment and why I continued herceptin alone until I was re-diagnosed. 

The name itself – triple negative – basically says something along the lines of, “We have absolutely no idea what is feeding this or how to treat it”. For this reason, it tends to be a significantly more aggressive form of breast cancer that is extremely challenging to treat. This is why, often times, a systemic “bomb” of sorts is thrown at your body in the hopes that it will kill the cancer (usually while also killing other rapidly reproducing  cells, such a hair).

Recently, there has been a significant amount of research being put into TNBC so that it will no longer be an unknown cause.  Genetic testing is extremely important, as I am learning that there are actually multiple types of genetic testing that can be done to distinguish what may be driving my cancer. There are also many clinical trials -quite a few that show promise – directed at TNBC. Some are working on your entire system while others attack certain genes. Immunotherapy is a big one that is basically a hit or miss (as i understand it anyway) but absolutely something worth trying.

I appreciate that there is a day to create awareness around TNBC but like I mentioned, I didn’t even know there was such a thing. I learned it from some of the Stage 4 breast cancer Facebook pages that I follow. That being said, all breast cancer sucks. Regardless of hormone receptor status, it is a constant battle and a regular struggle to get through each day, especially with a sense of normalcy, when dealing with breast cancer. Even when there is a specific hormone that may be driving the cancer, there may also be a gene – or multiple genes – that are also driving it. This can make any cancer extremely aggressive to treat and determine whether or not it’ll react to standard treatment options and for how long. Especially as Stage 4, there will come a point when a treatment will stop working and a new one must be sought out – all while considering quality of life.

And then there’s cases like mine where the cancer morphed along the way and throws everything out of whack! And as I learn more and chat more with others, I am learning that it is not uncommon for cancer to morph – even again. It’s also not uncommon to have different drivers of cancer within you. Perhaps you are triple negative but the cancer in your brain is actually HER2+. This is one reason why a biopsy (and in my opinion Foundation One genetic testing) is so important with each new cancer. Admittedly, I have not had my bones tested. I hear that’s pretty horrible.

Anyway, that’s what I have to say. I have to smile because I started this post with nothing particular in mind, thinking it’d be short and sweet. But as it turns out, I apparently have a bit to say about TNBC.  😉

As always, if you are interested in donating to Stage 4 research – where every single penny goes to just that – you can do so at Metavivor.org. I pray that within my lifetime, I will be able to see this disease turn into something chronic that I have to live with – a long, long life – rather than a terminal one.

I hope you learned a little something about TNBC today. 😘❤