Surgeries(?)

 Hey there, me again. 

A lot has happened since the last time I posted. For one: my surgery was April 17th (Axillary lymph node dissection - ALND). Lots of drama happened prior to the surgery, as the insurance company refused to cover the second operation (the lymphovenous bypass). I was pretty disappointed but hopeful that by jumping through some hoops, and reasoning with the insurance company that they would come around. They didn't. They stated that the procedure is still considered "experimental" unless you meet very specific criteria (you have to have been diagnosed with lymphedema already, for one thing)...WHICH IS EXACTLY WHAT I AM TRYING TO AVOID BY HAVING THIS SURGERY! So utterly ridiculous. It was a big decision to make, and it really did come down to the wire (the 2 surgeons had a heart to heart with me just prior to rolling me back to the operating room. After a lot of back and forth, I decided to go ahead with the surgery even if I had to pay out of pocket for it (I was told it would be between $5000-$10,000 that I would be responsible for paying - OUCH). But... I refuse to let the insurance company dictate my care/treatment! What a crappy position to put a cancer patient in...to have to worry about how to pay for a necessary procedure recommended by their doctor. I know there are patients in much worse circumstances than my own, so even though this instance is unfortunate, I am grateful to have a job and good insurance that pays for most of what I am going through. 

Our medical system is broken; it really shouldn't be like this.

Overall, my surgeries were successful. 11 lymph nodes were removed and sent to be tested (looking to see how many of them had cancer). I had to wait around 5 days for the results (not fun). One lymph node was found to have cancer, and the cancer extended a bit to the tissues surrounding the node "extranodal extension present". The scans had seen something abnormal in up to 3 of my nodes previously, but the pathology report is the more accurate measurement (so one node with cancer it is!). 

Just recently, the lab re-ran the cancer tissues taken during the surgery and found that the cancer is HER2+, ER+, PR-  HER2+ means that the cancer cells have high levels of the HER2 protein, and the cancer is more aggressive (Yippie!). With my prior "bout" with cancer, I was also HER2+ (but only marginally), regardless, being HER2+ at that time meant that I could be treated with a specific medicine called Herceptin. (It's an infusion that I had for a year previously). I'm not sure what it means this time though, unclear if I will get Herceptin again or not. Being ER+ (Estrogen receptor positive) means the cancer is sort of fed by Estrogen. PR- (Progesterone receptor negative) demonstrating that my cancer cells do not have receptors that respond to progesterone. All of that info helps guide treatment decisions. In other news, the bypass appears to have worked and she was able to attach 2 vessels to help with moving lymph fluid, picking up some of the slack from the now-missing lymph nodes.

I've been recovering relatively well, resting as much as I can, but it's HARD. I do not do well with sitting idle. I'm watching lots of crime documentaries - makes me feel much better about my life. Hahahaha. I had a JP drain for a little over a week and had a post op appointment where it was removed. I was wearing an ace wrap around my arm (for compression, and to help with keeping the lymph fluid from settling in my arm, now I am wearing a compression sleeve almost all of the time, for the same reason. The sleeve also provides a bit more protection for my skin, which is helpful as well, as I have to be really careful not to injure the arm where the lymph nodes were removed (I'm not allowed to have my blood pressure taken in that arm, no injections, etc). Any injury sustained in that arm puts me at an even higher risk for lymphedema (studies say my risk was already between 15-53%, but drops to like 7% since I've had the bypass)

My arm is pretty painful at the moment. I have a complication that can occur with breast cancer surgery - cording. It's technically called "axillary web syndrome", and it's not fun. For those that were here for the 1st diagnosis, you may remember that I had "cording" last time as well. It's more severe this time, and it's really limiting my range of motion and it's super painful. I've been doing exercises to help, but I may have to get a referral for OT/PT to do more than I am able to do on my own. In addition to the pain from cording, I have pretty bad nerve pain as well (it extends the length of my arm and it feels like burning, tender to the touch. Even setting my arm down or touching it lightly is pretty painful. I'm hoping with time, it will dissipate. I just started Gabapentin, and that seems to be helping a tad. Fingers crossed that this pain clears up soon, as I have things to do!

I'd like to take a moment here to thank Kristen for setting up a meal train for me and for the folks who have signed up to bring me a meal or donated money on the meal train site. Not having to worry about making a meal that night for dinner has been so tremendously helpful during my recovery. If you know someone going through surgery or other cancer treatments, I HIGHLY RECOMMEND setting up a meal delivery sign up for them!  

Well, next on the agenda for me is getting a port placed - again. A rePORTing, if you will. I need the port again, because, yes, I will be having chemotherapy again. I'll be having the surgery for the port placement this Thursday, and then my first NEW chemo will be on Friday. The chemo regimen this time is "CMF", I'll go to chemo every 3 weeks for 6 months. 

A chemo port is a small, implantable device that attaches to a vein, usually in the upper chest area. It allows healthcare providers to draw blood and give treatments, including chemotherapy drugs, without a needle stick. The port can remain in place for weeks, months, or even years. 

clevelandclinic.org+4

So, the order for treatment (for me) is: 

1st line treatment: Surgery (check)

2nd: Chemo (port surgery prior) CMF (Cyclophosphamide, Methotrexate and Fluorouracil) Infusions every 3 weeks for 6 months

3rd: Radiation (5 days a week for 4-6 weeks)

4th: Hormone/endocrine therapy (at least 5 years, typically in pill form, but there's a 2 part injection called Faslodex we're looking into) - we'll cross this bridge when I come to it...

5th?: Possible other treatment that we are looking into- a CDK46 inhibitor (a targeted therapy), a pill taken for 2-3 years. My cancer (sample taken during latest surgery) is now being tested to look for a specific marker/genetic mutation (ESR-1 - which can develop after being treated previously for breast cancer. The cancer can literally mutate to resist treatment efforts to try and stay alive and spread.

To be continued...