This post has been on my mind all day today. Do it. No excuses. It’s time to do or say or be the things that you have been dreaming about. 💚
I typically turn to “Dr Google” when I have a question and if it’s medical related, one of the first results is usually the Mayo Clinic. I find their site quite helpful in laying out information and turn to it often. So when I heard it was a top cancer hospital, I was excited to visit them. Their campus is massive but their check-in process is quick and everyone is quite friendly.
We learned a lot today. It’s interesting to hear the perspectives on my disease and what the next steps are. This was the last visit we had planned and although I totally slacked on uploading my recent documents (oops, thankfully they are working to get them!), it could not have come at a better time with my recent progression. We talked for well over an hour and the doctor was wonderful and very kind. She even gave me tips on how to organize my records!
We talked a lot about trials and some of the trials that are out there now. Immunotherapy is the big topic of discussion lately and a lot of them focus on triple negative breast cancer. Many of them also are specific to a particular genetic marker.
After I asked my doctor about my skin two weeks ago, they requested my brain tumor to be sent off for additional genetic testing. This testing will indicate what specific markers my tumor has, what would potentially fight off those markers AND what centers have clinical trials open for them. That being said, I can make a decision today about a clinical trial but it would be TN only, not a targeted therapy specific to my markers. So it makes sense for me to wait. I was advised it takes 2 – 3 weeks and it’s been 2 so the test should be back soon.
I anticipate progression while waiting. One of my questions was whether I should continue Xeloda because it may be working in other areas. She agreed that is is possible but one of the concerns that oncologists have when cancer grows despite treatment is that the treatment (Xeloda) may actually be feeding my cancer and helping it to grow. No thanks.
I also cancelled my scans for tomorrow. I learned that the scans are not necessary for trial assessment but also that trials require that I have scans within a certain time frame of beginning, which is typically a week or two. No reason to expose myself to additional radiation. I also learned that the Xgeva (which I’ll take forever because of my bones, from what I understand) can potentially cause me to light up like crazy because it is going to work on my bones. This would cause a false positive result, which I certainly don’t want. I was also advised that my bones have holes in them from the cancer, so I need to be careful (especially with little man) because I can potentially break a bone doing something as simple as catching Jacob. Yikes.
We also talked a lot about quality of life and what that means with different treatment options. I think it’s an important conversation to have no matter what.
I know we learned more but that’s all for now. I’m tired and there’s more to come. No treatment makes me nervous but I also think it’s important to have all the information before making a decision, and that includes my genetic markers.
Today was a really good day of learning and I’m so glad for the visit! 💚
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!
When I was pregnant with Jacob, I was seriously emotional. My biggest weakness? Ugh, commercials. We typically have the tv on while getting ready for work in the morning. One morning there was a commercial where a man was proposing to a woman and first proposed to her daughter. I think it was a ring commercial. I’m watching it, bawling my eyes out, no longer concerned about getting dressed, when Joe comes running into the bedroom. “Dang it, you already saw it.” This sweet man had caught the beginning of the commercial in the other room and sprinted across the house in the hopes of turning it off before I saw it to save me from morning tears.
The truth is, I’ve been more emotional than usual this past week. I blame October. 😉 I’ve been on the verge on tears and find songs make me cry recently. Not today though. Today, I didn’t let the tears flow.
I saw my radiation oncologist and my oncologist for regularly scheduled checkups and expressed my concern with both of them about my skin. They are as concerned as me that my breast cancer is back and that the Xeloda has stopped working. So, today we say good bye to it. It’s had a good, short, run but its time with me is up.
I have IV chemo options, which are “standard” treatment options for me. However, my next step is to pursue clinical trials. I have reached out to the different centers that we have (thankfully!) visited and asked what my options are based on what we know. There are a few tests outstanding currently but we are moving forward with what we know now. Treatment isn’t as urgent as needing to start something this week, however I will need to start something within the next 2 – 3 weeks. Clinical trials take time, especially determining what I qualify for and the testing to determine that I actually do, which is why I’ve reached out immediately. I also learned today that a lot of clinical trials require that you only have one treatment as Stage 4, so I want to pursue them now versus later. The standard chemo we can store for another time.
Hearing confirmation of my suspicions is not awesome. But frankly, I am pround of myself for staying strong and focused today. My tears can come another day…and they will. But not today.
On a positive note, my skin will heal faster with the Xeloda out of my system. AND! My feet will begin to heal as well. Now those things are definitely worth getting excited about!!
I know this comes as a shock to many and for that, I am truly sorry. I had hoped for a longer run but this is not the drug for me. So, we move forward and find the one that is. It will take a lot of calls, tons of research and likely a few visits but we will find it. And it will work. Why? Because I have faith that it will. And with faith, we can move mountains.
Eek! Our local country station interviewed me today about breast cancer. I’ll be featured on the morning show tomorrow at 7:30 am est! Hopefully I didn’t sound too crazy – haha! 😀😶
Be sure to check them out via the radio or live stream at:
I am honored to be featured on The Underbelly today! Feel free to check it out. ☺💚💗
I attended an event recently where they “congratulated” cancer survivors. It’s an event that I attended as a Stage 3 patient as well and I recall the sense of pride that I had at eventually being a “survivor”. I had a treatment plan, a path forward and a future. There was the fear of cancer coming back but that was drowned out by treatment, next steps and being “cured”.
Attending this event, I almost felt like a fraud. Sounds silly, right? Yes, I survive every single day. I survive each treatment, each pill, each shot, each blood draw. But I will not survive cancer. Harsh? Yes. Reality? It is. There will come a day – 1, 5, 10, 50 years from now – that this disease will progress to a point that I cannot battle it any longer.
I am not saying that I will ever give up because I don’t think that I ever can. I will continue to seek out additional treatments, trials and alternatives. But…
If I am not a survivor, what am I? This question may seem irrelevant but I find myself lost between the world of early stage survivors and people who have succumbed to this disease. Where do metastatic breast cancer patients fit in?
This has been on my mind a lot. What am I? Well, I’ll tell you.
I am a wife. I am a mother. I am a daughter. I am a sister. I am a granddaughter. I am a cousin. I am an aunt. I am a friend. I am a woman. I am 32. I am a reader. I am a beach lover. I am a perfectionist. I am silly. I am spacey. I am a lover – through and through. I am a hugger. I am hard working. I am loyal. I am compassionate. I am committed. I am strong. I am weak. I am a thinker. I am a crier. I am a doer. I am caring. I am kind. I am faithful.
I am a lifer. I am metastatic breast cancer. I am me.
I don’t know that there is a word to replace “survivor”. But it’s what I’m doing…and more. I pray that I will live to see the day where I can unequivocally shout from the rooftops – I AM CURED.