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. 💚💚💚

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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. 😘❤

Mmm…cake!

Although slightly better, I still spent the day in bed. I cannot seem to escape this dang headache though thankfully the new medicine keeps it at bay for a few hours. As soon as it wears off though, it creep back in. Ugh. It seriously sucks. 

I went to bed feeling pretty good LAST night but woke up every 4 hours, presumably when the medicine wore off, in tears and unable to sleep until the medicine kicked in. There’s been a lot of prayers for relief and thankfully God has been answering them with quick relief of the medicine kicking in.  This morning was rough but the medicine allowed me to make it through my draining without issue – another 600 ml there.

My husband made me chicken noodle soup – Ms Gras – which I can’t give up. Every time I have a cold or don’t feel well, that is my go-to soup. I know, I know, it’s probably horrible for me and filled with sodium. It’s what my momma always gave us and I just love that golden nugget. 😉 Of course he knows that I like to cut the water in half-ish and eat with some saltines. It felt so so good to eat a meal again and I chowed down. Yummy!!

Unfortunately, my stomach wasn’t happy that I ate as much as I did and it came back up. Sigh. Well I tried, right? Back to bed to sleep that away.

I do have an appetite today though so I had Joe grab some bread and jam in the hopes of adding that to my repertoire of crackers and bananas. I have also been seeing commercial after commercial for this particular cake at the local grocery store and I couldn’t get that out of my head. One of my coworkers introduced me to the Chantilly Cake at Publix during a potluck a few years ago and my goodness, is it worth every calorie-ridden delicious bite!!

So for dinner tonight, that is what I enjoyed! And ohhh, was it magnificent. I only ate a little because I don’t want to upset my tummy and so far it’s settling in nicely. And frankly, with the way my appetite has been lately, I’m just glad to keep something down.

I hope everyone has had a wonderful week and has great plans for the weekend. Though I’ve spent the week in bed, I hope to regain some sense of normalcy, energy and no flipping headache pain this weekend. I also plan to ship out the Meghan’s Cross orders – yay!!!

Thank you kindly to everyone who has checked in on me and prayed for me this week. And to those that I owe a response to, I appreciate your patience and I’ll get to it as soon as I can. 💚

Keep spreading the love, my dear friends. Much love to all of you! 😘

Whew, a bit of relief…

It’s been a long couple of days. I fell asleep while little man played next to me around 5pm Tuesday night and I have barely moved since. I woke up later that evening with a horrendous headache that medicine barely took the edge off of. Wednesday was a heck of a day. It was spent in my bed, unable to keep anything down – including medicine for my massive headache – and trying to sleep away the pain as best as I could.

I’m not entirely sure what caused this intense headache or vomiting but it’s been awful. When I was able to keep down my headache medicine, it would give me a few hours of relief and sleep until I awoke again in incredible pain. I debated on going to the emergency room and decided to give it until this morning to see how I feel.

I spent most of the night awake and in tears from the pain. I prayed hard that I would be able to keep my next dose of medication down and that it would provide relief. At 3am, God answered that prayer and allowed me to sleep with a dull headache.

Thankfully, this morning I awoke with a dull throbbing. The massive headache of yesterday only came once so far today and I was able to keep the medicine in my belly. It was able to work and I was able to sleep. My head has been throbbing on and off all day but it’s been bearable enough that I don’t feel the need to visit the ER.

I also woke up with a slight hunger and I’ve been able to keep down a banana, an apple and saltines. This is good progress from yesterday!

I’ve still spent all day in bed and will likely remain here for the rest of the night. Thankfully, Joe has been wonderful with Jacob and little man has been helpful in taking care of his momma. ❤

I’ve spoken with my oncologist, who prescribed a new headache medicine in the hopes of offering me some relief. I’ll take it in just a bit, once the crackers in my belly settle.

I had a similar headache when I first started Afinitor, so I wonder about that side effect. It’s also possible that it’s a virus. We took Jacob to the doctor early Tuesday and he is fighting the cold virus and the stomach bug – poor little man! And I can say, I haven’t made much of an effort not to catch either of those.

By tomorrow, I hope that I will awake without any hint of a headache and that my energy level will be up again. It’s been a long couple of days!

Ordering Meghan’s Cross

WOW!! The response to donating for Meghan’s Cross has been nothing short of amazing!!

I understand that there has been some confusion regarding how to receive one, so I updated the Give page with how to order. I’m so sorry for the confusion!

Toni & Mark are already planning to spend some time this weekend making more but in the meantime, I can ship out orders purchased this week! I’m SO excited for everyone to be sharing in the love and faith Meghan’s Cross represents. 

Keep spreading that love! 💚

Whew – what a day!

It’s been about 3 months since my last follow ups with the brain radiation oncologist and the neurosurgeon, so today I had both of those. I had my routine 3 month head CT last Monday so both doctors were happy to report that my head is stable. Yay!!! Happy dance!!  💃💃💃  My CT looks the same as it did 3 months ago so, as my neurosurgeon said, stable is a great word in their world.

Since I will be having my surgery to remove tissue expanders soon, we talked about how my 3 month follow up will be an MRI instead of a CT of my head. This is a much longer exam, about 45 minutes inside a machine, and uses magnets to take the pictures instead of xrays like the CT. Since it uses magnets, that’s why my tissue expanders need to be removed prior to having one done. I haven’t had an MRI of my head since all of this began, so it’s a good thing to have this as – hopefully – a baseline for what my head looks like now. He indicated that it wouldn’t be surprising to find 1 or 2 very small tumors inside my head on my first MRI. Obviously we are praying for NONE but he indicated that if those 1 or 2 showed up and are not symptomatic, it’s ok, just something that he would want to know and keep an eye on. 

Since the morning was filled with appointments, I decided that it would make sense to use the rest of the day for appointments as well. The radiation oncologist who handled the radiation to my chest was next, where we discussed the never-ending open wound. When she first asked me about it, I told her I didn’t know what to do anymore because it didn’t seem to be doing anything. I showed her and she was excited that it, in fact, did look smaller than it had a month ago. Whew, I can’t tell you what a relief it was to hear that! So although it stinks that it’s still there (stinks is totally not a strong enough word!), at least it is slowly healing even if it doesn’t appear that way to me. She checked out the rest of my radiated field and then commented that the breast cancer on my skin appeared to be stable as well. I had actually had a similar thought this past weekend but it was nice to hear a doctor state that, especially with my rising tumor markers.

Next up was my plastic surgeon. This appointment was a pre-op for my upcoming surgery. My tissue expanders will officially be removed on Thursday, March 9. It was a lengthy appointment and we discussed the pre-op procedures, the actual surgery and the post-op instructions. I’ll have a drain on each side, similar to last year, that will require draining about 3 times a day for about a week (hopefully). No shower for the time that I have my drains, blah, and no changing the bandages until I see the plastic surgeon for my 1 week checkup. I’ll have just the surgical bra and underneath some bandages, steri-strips and internal soutures.

My plastic surgeon decided on a different approach to my incisions over the last 2 weeks. Because he wants to be conservative, he is obviously staying away from the open wound on my chest and has decided to go through my original mastectomy incisions. His initial decision was to create new incisions, under my breast, to stay away from the scar tissue that will have formed on the area of my original incisions. Since there was an extra boost of radiation given to my scars, there is likely significantly more scar tissue formed there. After thinking it over more, he decided that he does want to cut the original incisions, likely close to the original size as well, so that he can remove the tissue expanders and close up my chest without having extra skin leftover. Honestly, neither is ideal and although I didn’t cry today when we talked about it, the idea of no reconstruction makes my heart hurt. I get it and I understand the medical rationale behind it, it just stinks. 

We went over the risks of the surgery, with the most significant risk being that I don’t heal – potentially at all. This is obviously concerning , especially after this open radiation wound, and I asked him to go into more detail so that I fully understand. He indicated that there were certain things that he did not want to get into because he is optimistic about them not happening but did discuss some of the potential issues that I could have if I don’t heal. There is the potential for additional surgeries, infection and even that I quite literally never heal & have open wounds forever. Yikes. Double yikes. My head was swirling a bit and I couldn’t help but second guess the decision to do surgery. But…at the end of the day, the ability to have MRIs is important. The ability to detect cancer at its beginning stages in my brain is extremely important. 

I did have another appointment to end the afternoon but I canceled it previously, knowing that today would be exhausting – which it was.

Since I had so many appointments today, I didn’t have the home health nurse come (the times didn’t work out) and instead Joe drained my lung for the first time. I am always nervous about pain now but he did awesome and stopped as soon as I mentioned that it was starting to hurt. Another 725 ml drained this morning – ugh. But, I at least feel better for a bit!

Todaybwas a bit long. Thankfully, I am blessed with an amazing husband that was by my side for all appointments. This man never ceases to amaze me and I continue to be reminded of his unwavering faith in me. I can’t imagine anyone else helping me to make these impossible decisions.

I hope your week is off to a wonderful start! Enjoy this day and snuggle your loves!! 💚💚💚