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!

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!! 💚💚💚

Pain, pain, go away!

It’s a rainy day here in Central Florida…one that worked well with my impromptu nap this afternoon! It’s crazy to think that the week is already half over. I spent almost all weekend and a lot of this week “relaxing”. This really means that I’ve been too tired or uncomfortable to do anything. Thankfully my husband and little guy have been wonderful with taking care of me and ensuring my comfort.

I’ve consistently been draining a lot of fluid from my lung, which is drained every Monday, Wednesday and Friday. Last week ended at 850 ml, which was the amount drained again on Monday, and then 600 ml today. I owe a phone call to the doctor because Monday and today’s drainings hurt enough that I asked them to slow down and stop. I’m not sure if it’s close to the end and that’s why it hurts or if the tube is in a weird spot. It’s worth the ask, either way. The fluid causes discomfort and pain in my chest because it fills so quickly and in general, my back has been hurting a bit. I imagine this is also caused by the fluid but who knows.

My appetite is not awesome and I’m losing weight rather quickly because of it. This may be because of the mixing of chemo pills, Afinitor and Xeloda, so we will see how I feel during my week off, starting tomorrow. During my first trimester of pregnancy with Jacob, I had major food aversions. Everything seemed to upset my stomach and I basically lived off of cereal (this actually remained true throughout the rest of my pregnancy). Just the smell of foods would make my stomach turn. Even the times that I would crave something like crazy, I would eat it and immediately it would become unbearably unappetizing to me. This is reigning true now, only times about 10. Thank goodness for smoothies.

I’ve been able to get things done off of my to-do list, which helps me to feel accomplished, though my list is taking significantly longer to accomplish than it once did. I’m tired relatively quickly and often need to lay down after crossing a few things off. I’m grateful to be able to accomplish as much as I can, despite not feeling wonderful. 

It’s frustrating. The pain, the discomfort, the utter exhaustion and the overall feeling of not being well…it sucks. Throughout most of the last year and a half, I have been able to push through the times that I’ve felt bad, knowing that I would eventually feel good again. I’m struggling with that right now. The times that I feel bad are becoming more frequent than the times that I feel good.  And that hurts. I don’t like that. Despite putting on a smile and going out to do something, I am finding it harder and harder to force aside the feeling of discomfort. It’s frustrating because I want nothing more than a sense of normalcy, for my family to feel comfortable going out with me and enjoying our time together, rather than worrying if I am doing ok. I know they will worry either way, it’s just hard to come to terms with the fact that my new normal changes by the day. 

Tonight Jacob asked me if he could bring me to the doctor to feel better. While his innocence warms my heart, it stings for him to know that I’m not feeling well. I told him that I went to the doctor and have medicine to help me get better. He squealed in excitement at that and hugged me big.  He exclaimed, “Yay!! You get better! Did you see Dr T?” I laughed at his reference to his pediatrician (it amazes me what he remembers!) and held back tears, knowing that I will never get better despite his excitement.

I don’t share this for pity or to cause concern. I am not giving up and I know how very blessed that I am – if the last week has shown me nothing else, it’s that I am truly blessed. I share this because it is the reality of how I feel in this moment. Cancer sucks. It’s not all pink and frilly, sprinkled with rainbows & butterflies with a dash of survivorship. It’s constant pain, a forced smile and a lack of appetite. It’s a hope for a good day, the need to not have to nap, and to sleep through the night without waking up in pain.

It’s not letting my family see the struggle or witness the constant discomfort. It’s being afraid to make plans for the future, out of fear of how I will feel. It’s wondering if I will truly feel worse than I do during my worst moments now.

But, I will push all of those thoughts and feelings of discomfort aside. I will hug my boys and snuggle them to sleep. I will watch them breath deeply with sleep, knowing that for now I am blessed to wake up by their side and embrace another day with them. That, in itself, is one of the biggest blessings of all.

💚

Friday’s draining..

The home health nurse came today. I’m glad that it will be the same woman each time and that she is kind. I answered a small amount of questions – nothing like yesterday – and she took my vitals. I explained that I suspected there to be some fluid, maybe around 500 ml, because my friend noticed my shortness of breath unloading the dishwasher yesterday (she actually made me stop so she could do it) and also that I had been coughing quite a bit. We had a choice of ordering bottles in the 500 ml or 1 liter size. After talking it over, we decided to start with the larger size in case it’s a decent amount of fluid at first. We can order the smaller ones next time if we need to.

The bottles come in a sealed bag with a sterile kit that includes gloves, all bandaging needs (though I will need to order more so that I can change bandages in between, such as when I shower), alcohol wipes for cleaning the tubing & my skin around it and caps for the tubing (the caps will be replaced every visit). We decided that laying on the bed sitting up would be best and likely the most comfortable for me. 

Since the hospital had the tube outside of the bandages, she was able to drain me before changing them. After cleaning the plugs, she hooked me up to the tube connected to the bottle and fluid immediately started flowing out. She expressed her surprise, indicating that when the fluid comes out quickly like that it typically means that there is a large amount of fluid in there. The bottle was filling rather quickly too.

The hookup of the tubes is where some people say there is pain but I could only feel a little pop of pressure. The draining didn’t hurt at all and actually I could feel a bit of relief as the fluid left. It must have been putting a good amount of pressure on my lungs. There is a roller thingy on the tube that connects to the bottle so that I can control how fast or slow the fluid should drain or to stop the flow entirely. We started slow but picked up speed when I realized it didn’t hurt (I was super nervous about it being painful – still am!).

As the bottle filled, I could feel a bit of discomfort forming in my lungs and a cough getting ready to form. We slowed the fluid, saw that the bottle was already past the amount that is supposed to be taken at home, and stopped the flow. 1100 milileters was drained! That is craziness…the nurse indicated her surprise since I was drained 1200 milileters late Tuesday. She unhooked me, cleaned it and capped me off.

Next she took off the hospital bandage, cleaned me up from the antibacterial stuff they wiped on my skin from surgery (it was under the bandage so I couldn’t clean it myself), and then rebandaged me. The removal of the sticky tape was probably the worst part (does that bother anyone else?). The fluid itself gets flushed down the toilet, the bottle is wrapped in a plastic bag and tossed. Sadly, they are not recyclable.

The entire process took less than an hour and I was glad to have the bandage replaced. I still cannot believe the amount of fluid that came out today. Like I mentioned yesterday, I’m not sure if they didn’t drain me in full on Tuesday or if I’m truly filling up that fast. It also made me wonder if my lung will only hold 2 liters at a time and maybe that’s why I am always so uncomfortable. Perhaps it wants to produce a liter every other day but can’t because there is no room in my lung…until now. So it’ll be interesting to see how much fluid I continue to produce. I literally weighed 3 pounds less from the fluid removal. 😐

So that’s my excitement for today! Aside from that, I have been battling a cold that doesn’t seem to be getting better. We ventured out of the house tonight to see some dear friends and just a few hours into being out, I could feel that my body had enough. It was the first time that I had been out of the house since surgery but unfortunately, it didn’t last long. My cold seemed to get a little worse and the soreness that was getting a little better came back at full force. Yeesh. It was nice to get out for a bit and see our friends though!

So this weekend will be spent resting, recovering and enjoying this beautiful Florida weather with my boys. Happy Friday night, all. Here’s to the weekend! 💃💃💃