I’m prepped and waiting. The headaches have been horrible the past week or so but I’m waiting for surgery now to remove the tissue expanders without reconstruction. Love and prayers appreciated!
Love you all! 💚
I’m prepped and waiting. The headaches have been horrible the past week or so but I’m waiting for surgery now to remove the tissue expanders without reconstruction. Love and prayers appreciated!
Love you all! 💚
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. 😘❤
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!
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!! 💚💚💚
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.
Since being diagnosed with cancer, especially Stage 4, I am not a big believer in “wasted” days. You know the ones that I’m talking about…the days where you stay in your pj’s just about all day or that you get dressed but never leave the house or that you even spend simply binging on some TV shows. There was once a time where I felt as though I had to go-go-go in order for the day to feel particularly memorable or significant, I suppose. After Jacob was born, any day spent snuggling with him was considered amazing and yet I still felt the urge to be doing something or to have plans most days.
I have an ongoing list of things that I need to do. While they aren’t “urgent”, they are things that loom over my head. They don’t require a significant amount of effort, since most of them are phone calls or follow ups, but they are things that need to be done. My home health nurse visited again today (Monday, Wednesday, Friday for a few short weeks), and I figured I’d tackle my list after that.
Today though, I slept. I didn’t mean to, it just happened. I have been battling with sleep since before surgery and the last two nights I have gotten close to 7 hours, which is exciting. The nurse came and removed another 750 ml of fluid (what?! Friday was only 260 ml. I don’t know how it increased, but I wonder if it has to do with my position during draining.)
I felt particularly tired after the nurse left and laid down, setting my alarm for 45 minutes later. I figured that I’d have a quick nap to regain my focus and then tackle my list. The day had different plans.
I woke up hours later…literally. I couldn’t believe it! I must have turned my alarm off while sleeping and continued to snuggle under the covers.
When I finally woke up, I felt quite guilty. My list is still untouched – well, that’s a lie; I just added 3 more calls to it – my coffee is sitting cold in its mug and I haven’t even unloaded the dishwasher from last night. I feel guilt trying to sneak in and make itself comfortable, but I won’t let it. I was tired and my body needed the extra rest. I feel as though I have pushed myself many times over the last year & a half and I don’t want to do that anymore. Whether I meant to or not, I gave my body the rest that it craved.
So, that’s my day. I do not consider it wasted but rather needed. A day that my body and mind was urging for…to rest.
I posted a few weeks ago about needing ideas for how to help organize the ridiculous amount of treatment related…stuff. I received a call a few days later from Aaron, the owner of Bear Residential Construction in Zellwood. He explained that him and his wife read my blog and have been wanting to do something to help – and that helping with storage was right up his alley! He asked to come by our house the following week to see what space we had and what supplies we were looking to store. I was shocked and excited about the offer!!
Aaron stopped by last Monday, along with Mike from Team Gina. They were surprised at just how much stuff I actually have related to treatment – with more supplies for the PleurX Catheter on the way. They discussed options and thought that a large cabinet would be best, which we have the space for in our bedroom. It would allow us to consolidate all of my supplies, which are currently spread amongst the two bathrooms, a closet, my master bathroom sink and the top of the refrigerator, into one central location. I was giddy with excitement when they showed me what they had in mind and headed out to order supplies.
Aaron called me Friday to let me know that everything was on track and that they should be stopping over to install it today – which they did! Aaron and Mike ventured back over to our side of the town, bringing Tom from Team Gina with them, and with the trailer in tow.
They spent a few hours installing the cabinet in our bedroom. They secured it to the wall, removed the baseboards so that it sits flush and even brought along childproof locks to keep Jacob out. The cabinet itself is amazing. They painted it to match the other cabinets in our bathroom, included adjustable shelves and it has TONS of storage space! It’s…incredible. It’s more than I ever envisioned and works perfectly to centralize all of my supplies – and in a place where I use them most!
In addition to the cabinet that they graciously supplied us with, they asked if we would like to join them for the weekend at the Team Gina Golf Tournament in April. Ummm…YES!!
AND!! We get to ride in the hot air balloon to help with the ball drop for the tournament. How cool is that?!
On top of the cabinet, the golf tournament and lots of laughs with the guys…they also gifted us a very generous donation towards my medical & prescription costs for this year.
To say that I am too blessed to complain would be an understatement. These men have made – and continue to make – a profound impact on my life and the life of my family. They are kind, caring, generous, loyal and funny. I am so blessed to have them in my life. 💚