What’s missing…

Today while getting ready I did not have to take an extra 20ish minutes of mine and my husband’s time. No covering in silvadene, xeroform, bandages and netting. Just a few minutes of cleaning the one wound with saline, applying the Santyl and covering with a saline soaked gauze and a bandage. Sounds like a lot but I don’t think the entire process took 5 minutes  – much less than before!

I’ll have to change the saline in about 3 – 4 hours but it’s a much easier process. I won’t pretend it doesn’t hurt because it’s pretty painful. I would compare it to taking a shower when my chest was all open wounds. It feels like that on the open wound. Hopefully this causes it to heal quickly! 

Happy Wednesday, friends! Try to find a way to spread some love today. 💚

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Xgeva…and updates

When I was doing chemo last year, we would travel back to the treatment center the next day for hydration and a shot of Neulasta, which helped my blood counts be stronger. It was a shot in my belly and Joe (sometimes my sister) would be required to warm it up ahead of time so it didn’t hurt as badly going in. One time we forgot to warm it up and whew! I could feel the difference and still recall how much that shot hurt over the others. We always joked with the nurse about losing the $3000+ shot while warming it up. One of the nurses mentioned that she had actually thought she lost it once because she forgot that the husband was warming it up and panicked. Eek!

Today we traveled to the treatment center for me to receive my first (perhaps only) monthly injection of Xgeva. We know that I have cancer in my bones and the Xeloda also pulls nutrients out of bones, making them a bit more brittle. It was described to me that my bones currently look like scaffolding inside because of the cancer and the Xeloda working in them. The Xgeva will go in and fill in all the cracks with the right nutrients. Xgeva pulls Calcium and Vitamin D out of my blood to replace it in my bones and make them stronger. It is an anti-cancer / chemo agent to some degree but its main focus is the bones. I started taking prescription supplements as well, to replace the Calcium and Vitamin D in my blood.

The shot itself was barely painful at all and was actually quite small. It was in my right arm and I learned ahead of time to warm it up and that it should be done over a longer period of time so it is less painful (1 – 2 minutes). Thankfully the nurse knew these tricks too so I barely felt a thing. There shouldn’t be any side effects, though I know what to look for just in case.

Tomorrow, we head to the Mayo Clinic in Jacksonville. What was a “standard” appointment has now become critical to me since it will be my first discussion about which clinical trials are available to me here.

Two of the centers have reached back out to me and requested that I visit them in person versus over the phone. I am completely understanding of that but feel as though I’m in between a bit of a rock and a hard place. I’d like to know the names of the clinical trials each center has available for me (based on recent scans, tests, etc which have changed slightly since each visit) so I can research and determine what trials are most appealing. But I won’t know the actual trials until I visit. See my predicament? There is a great website calling ClinicalTrials.gov that lists out ALL of the clinical trials available so I have been using that to do research but it’s rather overwhelming. There is a lot of information, some that does and does not apply to me, and honestly a lot of words that I’m not sure whether or not they do apply (medical jargon?). There are also quite a few trials that are based on tests that I still have outstanding.

So, that is why I am super curious about tomorrow’s appointment. Local treatment makes the most sense but I will go wherever and do whatever I need to in order to receive the best prognosis and treatment. We will see what tomorrow brings!

Happy Wednesday, everyone!

My Wednesday Updates

And we’re back! Whew, it’s been a crazy season of travel and despite the amazing times that we have had, I am relieved to be home. Just one more local center visit  (well, 2 hours local) and then we are done  – hopefully for a while!

So after talking with my oncologist, I attempted to take an extra week off from Xeloda to help heal a little better from radiation but also allow my blood counts and other side effects to calm down a bit. My skin started to heal a little faster from radiation, which is super exciting. My feet started peeling like crazy during my time off but thankfully aren’t painful just yet.

Unfortunately, during my bath last Tuesday night I noticed what appears to be breast cancer coming back on my skin. It is on my left and center belly, under the radiated area. I chatted with the doctor Wednesday morning and after a few pictures and discussion of healing for 2 extra days versus starting Xeloda a little sooner than discussed, we decided to start Xeloda on Wednesday. We did not do a biopsy but we are pretty confident that it is cancer. Hopefully it was just a few days too long that the Xeloda took a break and it is actually still working. We are praying hard for that!! We know the CT scan before showed awesome progress! The radiation oncologist (RO) said today that it likely would not be gone by now. The Xeloda attacks the tumor directly, which absorbs the Xeloda, turns it bright red, inflamed and quite angry. That is pretty much what’s happening now so I am optimistic! 

My radiation burns are still there. Some parts are quite itchy where there isn’t raw skin. I do have lots of raw skin still but it’s healing…slowly but surely. I’m just sick of bandages and 3 times a day changes. But it’s a small price to pay!

And on that note, because I like to keep things interesting, I have been having some pretty intense pain in an area that was double radiated on my left side. It’s on the end / center of my chest, by the my expander. It’s not rib pain but expander or scar pain. I’ve had it for 2 or 3 weeks now and it’s more painful than the radiation burns, if you can believe that. My RO thought it was odd for sure and last Thursday, my scar opened up. It’s been opening a little more over the last week and she wanted me to see my plastic surgeon (PS) to check it out immediately, since she had never seen it happen before. Especially given my age and how well I am healing, it’s surprising that it would open suddenly. We are thinking it may have opened as a result of starting the Xeloda again (rad-intensifier). So I also headed to the PS today and after checking it out, he was relieved that it appears to be a superficial skin opening. Everything is healing really well around it, the new skin growth is there and thankfully the expander is not coming through! The skin underneath looks great and intact. I know what to look for and the pain will hopefully get better with time. 

We also discussed my next surgery. It was originally slated for 5 – 6 months after stopping radiation and depending on my healing. After chatting about this in more detail, it’s decided that my reconstruction attempt should be as soon as possible. I cannot have MRIs currently because of the tissue expanders and that in itself is concerning. They show a lot more than CT scans, especially in my brain, so it is incredibly important to have those sooner rather than later. Typically, the PS waits to help eliminate scar tissue and allow more time for healing. In my case, the MRI outweighs the risks of waiting. 

So then comes the question of expansion. We reduced my left for radiation down to 300 (my right is still at 620). I cannot express my relief that he didn’t want to remove fluid to assist my scar today! There is a lot of concern around whether or not I will even be able to expand on the left side. Basically, my skin healed too well around the expander. It tightened up nicely and allowed the scar tissue to form around the expander. The risk is that when we go to expand, I may – quite literally – expand inward. We will start much lower than before and see how it goes. There is the potential risk that instead of expanding outward, I expand inward towards my ribs. We don’t want that. If that happens, we obviously stop and stay as is. We will cross that bridge when it comes. Frankly, I am fine with anything there at this point. I’d just like my chest bigger than my belly! 😉

We are optimistic that I will heal without difficulty but there is the possibility of a second surgery to remove my implants if I do not heal properly. Again, we will cross that bridge when it comes and hope for the best. I’ll be glad to be rid of these annoying and tight tissue expanders!

In terms of timing, my skin will hopefully be healed completely from radiation within a month. We will then attempt expansion and almost immediately after expansion attempts then we will have surgery. Much sooner than expected! 

So those are my updates for today. As a random side note, I am so blessed with my doctors. At every single visit, they sit down and chat with me. They pull up a chair or offer a hug and they want to know about…life. Not just cancer but the wedding we were just in or how Jacob is doing in school. They genuinely care about us – and I am just so grateful for that!

Happy Wednesday, friends! Continue to spread that love around! 💚

Hello, Tuesday…

It’s Tuesday and I like to keep things interesting! I haven’t been around and I have a lot to share about this past week but for now I’m going to stick with today’s updates. Why? Well, frankly because I’m exhausted despite my 3 hour nap.

I ventured out early this morning to see my radiation oncologist (RO), who was anxious to hear about Memorial Sloan Kettering (MSK) and also see my skin. My skin is better overall than it was before, even just a week ago, but still in rough shape. I’m using (I say me but really, Joe does the hard part of applying everything!) less xeroform and bandages but still go through at least 12 – 15 of each per day with 3 dressings changes. Joe is such a pro now that even the doctor commented on his technique being great today while he applied a coating of the prescription to my skin. She was also surprised and impressed that we turned the “tube top” netting into a vest of-sorts that goes over my shoulders so that it stays in place all day.

Anyway, we are only 2 ½ weeks out of radiation and my radiation was a higher dose than usual plus Xeloda so my skin is healing slowly. Well, I’m over it. I smile while typing that but seriously, enough already? I’m sick of wearing bandages all day every single day. Literally. The RO proactively agreed that my skin is taking a while, which we expected, but she wants to help it along so after a chat with my medical oncologist (MO) and me, we all agreed to take an extra week off of Xeloda. My feet and skin will thank me for that.

My RO commented on how nice my skin looks overall and that it is better each week. By next week, hopefully it will be mostly healed, likely with the exception of the area that was previously radiated. I’m banking on it, since I’m in a wedding in just 10 days! It was also decided that there will be no boost so I’m totally done with radiation (for now and hopefully ever) – WAHOO!

Next I ventured across the way to my MO’s office to have my blood work checked again. Last week it was quite low, borderline transfusion, so being off Xeloda for a few days, I was optimistic despite my sheer exhaustion. Unfortunately, exhaustion and pale skin doesn’t lie. My counts were even lower this week, with my hemoglobin down to 6.6 (average for women is 11.4 – 14.7). Yikes. The nurse joked about how I was even walking but it explains why I had a hard time taking the stairs to the second floor a few minutes prior. I’ll need two pints of blood tomorrow, which I’ve never done before. I’m nervous, of course, but it is what it is and I’m hopeful to feel better. I’m fairly certain that I could sleep all day right now.

My MO stopped in and joked with me about my skin matching my white tank top, which seemed appropriate, considering! He is a very kind man and I appreciate him looking out for me. The nurse made all of the arrangements for tomorrow then walked me upstairs, where I normally receive IV chemo, and set me up to have my blood type checked. She hugged me after ensuring I was all set and went on her way. The nurse unfortunately had some challenges with my veins to check my blood. Only my right arm can be used since I had lymph nodes removed from my left and my port cannot be accessed right now because of radiation burns. I have quite a few bruises from recent blood draws on my right arm and at least one scarred vein so sadly, we are running out of places. She tried my hand twice but couldn’t draw blood and then blew a vein. L She ended up using the same hole that they drew blood from earlier, which hurt like heck to access but at least it worked. My quick blood work appointment turned into almost 3 hours.

It was time to rest after that and I took a very long nap. I’m up now and waiting for little man to arrive home but honestly, I’m ready for bed again already. I’m hopeful that the transfusion will give me some energy back because I desperately need it! On that note, I’m off to rest while waiting for the little guy. I’ll update more tomorrow while receiving my transfusion and share my incredible trip to NYC and MSK with you all! Happy Tuesday!!

How I’m feeling…

Happy Sunday, friends! Did anyone else see that gorgeous full moon last night?! My goodness, I thought I could reach out and touch it – it was incredible. We were driving home when it was rising and Jacob was in awe. The whole car ride he was watching for it behind the trees and buildings, asking “where moon go?” when it disappeared and yelling “there it is!” everytime he saw it. He even woke up talking about it this morning! 

I’m just over a week out of radiation treatment and I’m hopeful that I’ll start to feel better now. Dare I say, I feel as though the pain is improving slightly, though looking at pictures there are parts that are more red than before. I don’t think I curse quite as much when I’m getting bandaged up though, so that’s good news! 😉 I’m anxious to stop with the bandages since they are time consuming, uncomfortable and warm…but almost through it!

When was the last time you bathed instead of showering? I can’t remember the last time I did! The last few days, I’ve started bathing to help with the radiation burn. It’s not the greatest thing in the world but it is significantly better than showering. It must be the combination of the water falling vs me being able to take my time getting the extra lotion off my skin with a washcloth. I am glad to have found a happy medium!

I’m over a week into my 3rd cycle of Xeloda and so far, I feel good from that. My feet are lotioned up regularly and it’s causing some major dry skin in general but other than that, I only have fatigue so that’s great news. I’m hoping my feet don’t start to hurt until the end of this cycle, when it’s time to take a break again anyway. The combination of everything right now is causing me to make up for lost sleep, for sure. I feel as though I spend my days sleeping but I remind myself this is the time that my body needs it. I’m almost recovered from radiation and then hopefully it’ll just be chemo for a LONG time!

Our visit to Memorial Sloan Kettering is this week and I am super excited about it! After the last 2 visits, I think we have a better handle on what questions we have and need to understand, as well as a better handle on how I’m responding to treatment. I’m anxious – in a good way – for that visit…and for some cooler weather! 😉

This is going to be a great week, friends. I feel it in my heart. Spread the love and enjoy this beautiful day that we have all been gifted with!! 💚

All done! …sort of

Whenever Jacob finishes something – dinner, a puzzle, a book – he says “all done!” emphatically and waves his little hands in the air. It’s incredibly adorable and I find myself mirroring this habit of his back to him.

At radiation each morning when the whirl of the machine shuts off and the “Beam Off” light flickers dark, I can’t help but smile and think “all done!” Even if just for that moment or that day, my treatment is over.

Today, Joe & I ventured out to see the radiation oncologist and discuss my CT scan yesterday. My scans showed that my cancer has “essentially vanished”. Say, what?! We are stopping the standard radiation treatment going forward, especially with my upcoming travel – yay! It is undecided whether or not to do the boost treatments to my lymph nodes and chest but we have time to figure that out. Even the areas outside of the radiation field are disappearing.

I cannot tell you how much I needed that news today. My chest is certainly worse for wear and this week has been hard. I basically have no top layers of skin in the radiated areas, which is why showering and lotioning is so ridiculously painful. This week is supposed to be the worst and I will begin to heal hopefully as soon as this weekend. I am praying for that healing!!

I am not considered NED currently, as I haven’t had full body scans to confirm anything and my CT was of my neck and chest only. And I will never truly be cancer-free. The radiation oncologist agreed entirely, and stressed the importance of, visiting the different centers that we have been going to and that we have planned. At some point, the Xeloda will stop working and I will need to consider next steps. One of the things that I am learning at the different centers is that I do have options – including and excluding clinical trials. There are things that I can do as “standard treatments” before a trial or I can consider the trials that are available. Each center has been giving me the trial names to research in anticipation of the day that they are needed. And research is exploring more options every day.

So yes, I am a stage 4 metastatic breast cancer patient. And yes, this has been one of the hardest weeks of my life. But hearing that my cancer is not appearing on scans and that this pain has a purpose makes everything worthwhile.

Awesome.

I started this post with a story about this morning but honestly, I have no words. My radiation oncologist just called to discuss the CT I had this morning of my neck and chest. It looks awesome.

Awesome. That is the word she used. More than once.

We’ll discuss more when I see her tomorrow but basically, the areas where the cancer was infiltrating are melting away. Even the portions where she is not radiating, the Xeloda is doing its job and attacking it head on.

I can’t even type this without crying. My scans look awesome.

Awesome.

It’s an AWESOME day, my friends. We continue to pray, hope and love!