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...

Testing...testing...

 Well, all of the testing that I mentioned in my previous post, they happened. 

Chest/breast MRI, bone scan, brain MRI. Results were relatively BORING (boring=nothing exciting=nothing to worry about - sorta). So, I told a teeny tiny fib to the world when I posted (on Facebook) and reported that all of the results came back "BORING". I just wanted folks to hear some good news amongst all of the crap, to have a bit of a breather before my treatment begins. 

The fib: My brain MRI demonstrated some "hyperenhancement and thickening" in an area of my brain called the Rosenmuller fossa. The radiologist didn't seem super concerned about it, BUT I WAS. I figured it most-likely was nothing, but if I just left it alone, I'm sure that I would have always wondered if I had something suspicious going on up there (insert dumb blonde brain joke here). So, I was referred to a head/neck (ENT) surgeon and they did an endoscopy (yet another test!). 

The results: BORING (for real this time, I swear). 

I had appointments with the breast surgeon and with the plastic surgeon (both WOMEN - girl power!!), and then a pre-op (surgery) appointment. The breast surgeon is in charge of taking out the cancer (I'll be having an "Axillary lymph node dissection" (ANLD), where all of the lymph nodes in my armpit area are removed). Because of this, I am at a much higher risk of lymphedema (a swelling of my chest/arm, etc. that can be pretty debilitating). I was offered an additional surgery, called a "lymphovenous bypass" (LVP). Here's a better description than I could attempt:

Lymphovenous bypass is a microsurgical procedure designed to improve lymphatic drainage by connecting small lymphatic vessels directly to nearby veins. This technique helps to reduce swelling and discomfort associated with conditions like lymphedema by allowing lymph fluid to drain into the bloodstream, thereby alleviating fluid buildup. While it is not a cure for lymphedema, it can significantly enhance mobility and quality of life for patients. 

So, I will be having that procedure as well (It's like a 2 for 1 deal!). It's a relatively new "cutting edge" procedure, so it's cool that I have the opportunity to do something to help prevent lymphedema (this surgery wasn't even available the last time I had cancer). Research and advances in medicine are important!

I also had an occupational therapy (OT lymphedema specialist) appointment (this is advised prior to surgery). She took measurements of my arm/hand, demonstrated lymphatic drainage massage, gave me a bunch of literature/info, advised me on lymphedema garments I'll need to take to surgery with me (a sleeve and a glove that they will put on me after the surgery is complete). I was told to purchase at least 2 of the sleeves and gloves so that I could switch them out as needed (those suckers are pricey!) When I visited the surgeon she had me step on a special machine, called a SOZO, I believe (looks sort of like a scale), but it measures lymph fluid and can track lymph build up at the early stages. The OT had the same machine, and they will be monitoring me over time.

This whole process started in January (if we're counting from the initial doctor appt), and I'm ready to get this show on the road! The waiting is awful. Knowing that I have cancer, and that it's in my lymph nodes, ready to be transported to any other location in my body that it pleases! is almost enough to make me take a flipping scalpel to my own armpit. I received a call last week and FINALLY got my surgery date, and it's... NEXT WEEK! The surgery is an outpatient procedure (can you believe that?), and the word on the street is that it's about a 5 hour surgery. I'll have a drain after surgery and will have physical restrictions (pretty much can't use that arm for anything useful for a few weeks - Ha! Watch me, I'm an OT...I'm pretty crafty! ;) 

I'm baaaaaaaaaaaaaack!

And, so is IT. Yep, the cancer. It's back. 

Sorry for the abruptness of this blog post. I figured ripping off the band aid is better than prolonging the agony. I've been going through some medical testing for a bit, and it's been recently confirmed. 

Some back story: I hadn't been feeling great for a while now, but with all of life's circumstances in the past year (for those that may not know, we had a house fire last January, losing everything (90% of our belongings, our entire house, our 2 vehicles, etc. etc.), but maybe that's a post for another day... I swear my life is better(?) than fiction.

I attributed most of my crummy feelings to stress. I put off going to the doctor for a while, until things settled a bit at home for my family. Once we were mostly done with rebuilding the house, I decided to finally see a doctor, just in case something else was going on. Two of the biggest concerning issues: I have lost some weight in the past year (about 30 lbs), and my "gut" was telling me something was "off" (yes, an actual GUT FEELING). I had a very similar feeling in my gut about a year prior to my first breast cancer diagnosis (an uneasy, uncomfortable, nauseous sort of feeling in the pit of my stomach that is almost constant) and at that time I spent a lot of time trying to figure out what was going on, and they could never narrow down the cause of my discomfort. It just so happened that not too long after I had pretty much given up hope on figuring out my gut issues, I was given the breast cancer diagnosis, and LIKE MAGIC the gut issues subsided. I know I sound bonkers when I say this, but that's truly how it went down. Perhaps my body has a way of signaling me that something is wrong. 

Gut: "Hey girl, something's up, maybe you should get it checked out?"

Me: "Awww, I'm fine, I'm sure it's nothing... I just have stomach issues, no biggie. I could stand to lose a few pounds anyways. Look how well these jeans are fitting!"

Gut: "MAYDAY!! MAYDAY!! GIRL, GET TO THE DOCTOR!"

Me: "Oh, It's fine, I'm sure it's just stress or some other explanation." 

Universe: (Dad gets diagnosed with metastatic cancer, Mother-in-law gets diagnosed with metastatic cancer...)

Gut: BITCH GET YOUR ASS TO THE DOCTOR PRONTO

Me: OK, OK...I'm going".

So, I had to find a new primary care doctor (and that's a process I kept putting off as well), and then I finally made an appointment. Shout out to the PA who actually listened to me, didn't think I was delusional and made a thorough plan to investigate multiple issues. I had labs drawn, Echo scheduled, wore a Holter monitor for a day, had an abdominal CT, chest CT... The chest CT found enlarged axillary lymph nodes (in a location very close to my original cancer, so obviously this was concerning). An ultrasound was scheduled, and the results were "suspicious" (no bueno). I was immediately scheduled for a biopsy of my lymph nodes. 

The results: metastatic mammary carcinoma. 

And here we are. I just had an appointment with my oncologist (yesterday) and so far, the plan involves getting further testing (a brain MRI, chest MRI, bone scan) to see if this is in fact a recurrence (same cancer as before that came back) or a new primary tumor. What I do know is that I will be having surgery (getting lymph nodes and surrounding tissue removed) and getting radiation. Not yet sure if chemo is happening again (have to wait on those test results <---).  

I'm not sure how often I'll be updating this blog, but I remember it being a good way to update folks (for those that are interested in what's going on with me), as a way to record what's going on for myself as well (I have gone back to re-read previous posts, because you forget things!) and it also can be therapeutic to write things down instead of keeping it all bottled up in my head. 

Thanks for being here. For those of you who are reading this...if you haven't been to the doctor in a while (YOU KNOW WHO YOU ARE), go make an appointment!