I took the day off before surgery planning on a super productive day. I need to spend half a day at the DMV. I haven’t moved car registrations, my drivers license still has my old address and I haven’t done all of those lovely DMV tasks since we moved well over a year ago. I needed to run several other errands today. I know… I know… procrastination at it’s finest and I continued to procrastinate. I have been struggling with upper back pain again (lower has definitely benefitted from radiation, upper felt better, but now it is progressively getting worse). I woke up super sore and tired, so I did what a sore and tired person does when they have a day off. I stayed in bed and cuddled with my dogs (even though that is all I am going to do for the next week).
I had a lovely lunch date with some ladies who I adore. We hadn’t been able to catch up since everything got to where it is now. The explanation of my situation usually comes with the “there is no cure.” I am getting used to explaining it and forget that most of the time it puts everyone (including me… in tears, when it sinks in).
Median survival rate is three years after metastatic diagnosis. Many people live far beyond the three years. Averages are averages and nobody is average. I also really don’t do well with a too much of a “you can totally beat this attitude” – I want to wish that will be the case, but unfortunately I need access to medications and solutions that can make miracles happen. I accept the reality of my world, will hope for miracles and will make the best of what it is. I also don’t love the “OMG, drop everything, drink green juice, don’t do chemo and you will be cured…” I will wack you right upside the head, telling me treatment is poison is rude. Anyone who says something like that to me can go ahead make that decision if they get cancer, turn down regular treatment and let me know how it works out for them. It is their life in that case. I am fine with alternative medicine in addition to traditional medicine, but I appreciate modern medicine. Thank you very much (I even do drink green juice because it helps me get more veggies in).
I learned far into my cancer journey that I never understood remission, NED and all of the words related to progression of cancer cells and what they all meant. I feel like Ann does the best explanation over on her blog, it is worth a read. This is terminology you will see me use. I made an error at one point and thought remission meant cured and I told someone that stage 4 breast cancer doesn’t have remission, it does, it just doesn’t have a cure – I was super confused.
Here is how those terms apply to Stage IV breast cancer as I understand them now (also known as metastatic breast cancer or mets – the reason it is called that is because the tumors in other places outside of your breast are called metastases). As Ann noted, different cancers use these terms differently, which is one of the reasons I had them confused:
Remission: A decrease in signs and symptoms of cancer in the body. Although you may still have cancer present in the body. Metastatic patients typically aim for remission from scan to scan. That their treatment is working, the cancer isn’t progressing. This also usually means they are now stable. Stable is good!
NED: I preferred the term NED to remission when my cancer was in remission and I did not have symptoms of cancer in my body. I was technically in remission (and also NED), but I am getting the idea that the metsters prefer that NED be reserved for people with mets. Either way, it is no evidence of disease. Typically this means they do not see any visible signs of cancer in any of your scans. For stage 4 breast cancer this is usually not considered cured. They still figure that you have active tumor cells somewhere that will eventually create a tumor again. There are a lucky few that manage to stay NED forever, but they are a rare gem. I used to think this was crazy rare, but people like Ann in the blog I mentioned above and a large number of women in my stage 4 group are actually NED. Which is exciting to me.
Cure: Cancer is gone forever and your health is back. Consider donating to metastatic breast cancer research. It is different from early stage research, it needs funding, it needs attention and someday it could save lives. www.metavivor.com – until then metastatic breast cancer does not have a cure.
Thirty percent of women and men who are diagnosed with breast cancer will eventually develop stage 4 (metastatic) breast cancer and die. From www.metavivor.com
There was your lesson for the day (whether you wanted one or not).
Radiation recovery was rough. I kept thinking I should have been healed when I wasn’t. I had to stick to the soft food diet through to the end of last week. My lower digestive system healed first (that was what had hurt first, which was good, because that was the incapacitating pain). My esophagus took a bit longer. Right about when my esophagus started to heal, my upper back pain returned. I haven’t discussed it with my oncologist yet, I am hoping that getting my estrogen turned off will help shrink the tumors back down and alleviate some of that pain. I had my Zometa infusion on Friday and that seems to aggravate my back pain for a few days after the infusion (so I am crossing my fingers that today’s soreness was Zometa related).
I am learning to balance energy levels, work, pain, a social life, household chores and all of those things that make a normal life with what is going on with my body. Right now I haven’t found the right balance, I think the hardest part for me is learning that I can’t do it all right now. I will figure it out I hope!
As I was healing and my energy levels were getting better, my friend had some of us over for a super fun pie night. She had us bring our pie tins and rolling pins (we were also supposed to bring our aprons, but I forgot mine, so she let me borrow one – this was lucky because I somehow managed to cover myself in flour). She had the recipes ready and everything we needed to fill our pies (and make dough!). We had an evening having fun, drinking wine and making pie. Mike hasn’t complained one bit about his birthday coconut chocolate pie (I am pretty sure he likes pie more than cake, who doesn’t love pie?).
Surgery is tomorrow. They are having me come in at 7:00 AM. I assume that means surgery is around 9:00 AM. Yay for an early one! It is outpatient, so I will be home resting later that day. <3.