First “meh” day

Ugh. Despite my diagnosis and the initial “meh” attitude of just being in the dumps of being diagnosed with cancer (similar feeling anyone has being told “bad” news), I had my first real “meh” day yesterday. 

This week was a little crazy because everything got kicked into high gear. I had my “consent” forms for the clinical trial completed on Mon. Got non-stop calls and messages on Mon/Tues. Had my port inserted on Thursday and my surgeon consult on Friday. 

The port, or port-a-catheter, is a device that is put underneath the skin as a spot for easy access to my veins. With chemo and constant blood draws, there’s a high chance of ruining the veins in my arm. Instead, you insert a port with a line that connects directly to a central vein to my heart. The end of the catheter has like a “bulb” that fills with blood and can be used to draw blood or for infusions. 

I had to go super early on Thurs (be there at 7:30 am!) because I had to do a Covid test (rapid one) before surgery and wasn’t going to drive an hour to get a Covid test done the days before. So I got there early, checked in, got the Covid test, waited in the waiting room, test came back negative (no surprise!), and went into pre-op. The nurses had some issues finding a vein they liked. I’ve learned the last 2 years that my veins are tiny and weird. Normally it’s not a problem for them to get blood, but I have this one finicky vein that looks okay, but once you stick a needle in it, it doesn’t like to play well and makes you work for it. Some like my right arm and others my left. Luckily, at this point, doesn’t matter which arm. At any rate, 2 nurses looked at my right arm, didn’t like it, switched to my left, got the needle in and then had issues with getting blood out of it! It flushed okay and I didn’t have a build-up of saline so they didn’t know what was going on with it. Weird. It left a crazy looking bruise. Not the normal “blob” bruise, but like the hair follicles underneath got involved (it’s a spotty, deep purple bruise). 

Once that got taken care of, met the surgeon (PA) and the nurse took me into the surgery room. I found out I’d be in twilight. I’d never been in twilight before and wasn’t exactly thrilled, but it had to do with the fact I had to switch beds and move and stuff so they wanted me responsive. I did tell them I get nauseous on anesthesia so they said they’d add anti-nausea meds. 

The surgery itself was okay. I almost fell asleep when they were putting the catheter in, but woke up when they put the port in. It hurt! It wasn’t like a super sharp pain all the time (I had 2 times where it was...the local didn’t quite reach that spot well enough), but it was short and bearable. The rest was more pressure pain from trying to move the port underneath the skin. Pain was more like when you press down on your chest bone hard. Stanford is a teaching hospital and my PA had a teaching PA on hand. The PA did a suture and the teaching PA did a suture, which she had a little bit of issues doing. The PA wanted to throw another suture, but when she did, she didn’t like it. Said it was too close to the surface so it would “feel like sand” to me when I ran my hand over it. So she removed the suture and did it again. Then I can hear her saying “the site looks a little angry because of the suture, but it’s fine.” Oh, that’s cool to hear. Haha Apparently my port is slightly crooked too and they wished they moved it a few cm over too. Rolls eyes. It’s nothing that really impedes anything, but more a preference thing. 

The port sits underneath the skin in a “pocket”. It’s deep enough to not really be able to see well in person (looks like a slight bump), but also high enough up that nurses can feel it for when they need to access it. Chris calls me bionic now. Haha I also have to carry a card around that explains my port in case someone needs blood outside of Stanford. 

I can see why people say accessing your port can be sensitive...Mine is SUPER sensitive. It’s like a pain sensitive if you run your finger over the spot they tested the port access (the needle holes). So, that’s not great...the rest has a sensation dulling feeling to it. Kind of weird...

The port incision site doesn’t really hurt, but the pulling and stretching of that area when I move my arm or chest does hurt. I think it has more to do with the steri-tape pulling the skin and the skin learning to “incorporate” the port. The steri-tape also makes me ITCH. UGH! It’s not like an allergic reaction itch, but more of a skin irritating itch because the skin pulls underneath the adhesive. 

My neck did get messed up. The muscle at the base of my neck on the right side (near the incision) hurts a lot. My head was cocked to the side as they worked so I’m not sure if it’s that or the incision and catheter near it is causing it, but I have issues bending my neck to the left. It hurts and feels like the muscle is stretching in a not-good-way. Heat helps. Nothing else does. It is getting better, but I have to baby it. 

The surgery took them a little longer than expected because of the sutures, but in post-op I felt okay initially. As soon as I tried to focus, though, and got dressed, I started to feel nauseous. YAY. Ugh. They gave me a snack pack to take as I was leaving because it had crackers in it. I also hoped the food might help since it was 1:30 pm and I hadn’t eaten since the night before. I ate the grapes and crackers in the car and still felt nauseous so I slept the car ride home. Took a nap when we got home after I ate and still went to bed fairly early for me. Stupid anesthesia! I’ll have to ask for a different anti-nausea drug for surgery next time...I at least didn’t throw-up. 

Friday I felt okay. I definitely was sore. Something to be said for a sore neck/shoulder when you try to get out of bed. Use your abs! Not your chest/neck. Haha I worked in the morning and then went to Stanford’s South Bay (San Jose) cancer center (in between 17 and 85 highways). It’s a new building. I think it was built in 2015? It’s got a new smell to it still and super tech involved (the exam chair is also a scale when you sit on it haha). 

I liked the surgeon, but had to wait over an HOUR before I saw her. That was really annoying. She did evaluate me and say lumpectomy is always a possibility, but to know it’ll depend on the margins and tumor shrinking during treatment. If she ends up having to remove half the breast tissue, it might as well be a mastectomy with reconstruction. That made sense and I had know it was a possibility, but also brings it to the front as a possibility for mastectomy out of necessity and not precaution. She also said she likes the clinical trial and a lot of doctors do too because it allows them to adapt my treatment based on the actual biology. She wants to see me mid-way through treatment to see how I’m responding. If my oncologist and her don’t think it’s responding well, I could be pulled off the trial or just add the drug afterwards. Basically, it’s an adaptable clinical and it’s one of the reasons I was comfortable going on it. It’s not new drugs or radical regime, it’s just seeing if less is okay. If it’s not, I go back to the traditional route. 

Once the appointment was over, it took Chris and I over 2 hours to get home. Ugh. That really sucked. To top it off, Stanford called me to arrange an appointment and I told them I’d call them back when I got home. Rushed to do it, but got stuck in phone tree hell and missed them. Sucks because I have to go back in for an ultrasound to put a new marker in my lymph node (surgeon ordered it). The new marker will allow her to be able to find the cancerous lymph node. She said if the treatment really works, the lymph node will reduce in size and can make it really hard for her to find the marker already in it. So this marker will make it so she can always find it. It would be nice to make sure she removes the right lymph node. Haha At any rate, I was already going to Stanford on Monday for blood work and a diagnostic ultra sound so it would have been convenient to tack on the marker going in too. Missed the window. I kind of doubt they could have on a Monday anyway...but she wants the marker put in before I start treatment so it’s a short window. 

To say the least, missing the opportunity, the long day, the frustration, and I think the impact of having surgery the day before hit me hard. I might be PMSing too, but it was the crummiest I felt in the 6 weeks since my diagnosis. It was a sucky day and I started to cry when I was told I missed the breast imaging team to schedule. Yeah...In ways, it’s therapeutic, but was also a kind of “wake up” call for me. So far, I’ve been going through this fairly well. The anxiety of waiting wasn’t fun and being told I have breast cancer did result in tears later, but, generally, I’ve been okay. Yesterday was definitely the worst day I felt. It was bound to happen at some point and in ways I’m glad it happened now rather than later with chemo, but what a bummer still. 

Anyway, it’s Saturday now and I feel better. Loads better. It is what it is for my upcoming appointments and I’ll just have to deal with it. I also know that all this crazy driving to Stanford will subside once I start treatment. I’ll be going every 3 weeks instead of almost daily. Also, I slept well last night, lounged around all day, took a nap, and probably going to sleep somewhat early again today. I don’t think I slept as well as I could have the day before because of my neck.

Next week’s schedule:  

Monday: Bloodwork (9:40 am), diagnostic ultrasound of the lump and lymph node (1:30 pm), and Chemo Teach online (2pm - I might miss part of chemo teach because of the US)

TBD: Ultrasound to put in new marker in lymph node

Friday: 9:30 am blood work draw, 11:00 am meet with my oncologist, 1:00 pm infusion (they schedule it for SEVEN (7) hours! It might take less time, but it’s standard to schedule for 7 hours for the first infusion since they wait in between drugs to make sure there’s no adverse reactions)

I’ll have to plan a LONG day at Stanford on Friday. Bring food. Maybe walk the campus because I have time to kill in between appointments. Bummer with Covid that many areas like cafeterias and stuff are closed. Guess I’ll see what’s open. The South Bay Cancer Center has a zen garden in it. Wonder what they have nearby at the main campus (other than the ER next door haha). 

Intro to Stanford

What’s kind of funny about going to Stanford is the immediate level of “oh, you’ll be fine there” I get when people find out I’m going there now. Not to say I had any doubts at Salinas Valley Memorial Hospital (SVMH), but I can definitely tell people feel more assured. Guess that’s why you build “names” and “prestige” for a university/hospital. 

So how different is Stanford compared to SVMH? A lot! Stanford campus and medical has definitely carved its own mini city out, but that’s pretty normal for any large college. By a fluke we found parking right next to the cancer center. Somehow I got myself turned around on the map and we were driving to the building and happened to the parking lot closest to it! So we didn’t have to park in the garage and walk. Chris didn’t go in with me (wasn’t allowed) and so his thought was “what if I have to pee?” The mall (which we’ve gone to several times) is less than 2 miles down the road, but it turns out they have permanent, portable bathrooms right outside. We both used them and we kind of laughed that they’re cleaner inside than most indoor bathrooms at other places you go to! They even told you the last time they were cleaned and had a QR code so you could report if it needed to be cleaned. What 21st century portable bathroom is this?! (They were tiny, though...haha)

Chris walked me to the building and I went into the waiting room and it was spiffy and new looking. SVMH definitely felt like the 80’s construction. The Stanford rooms themselves were pretty typical. I didn’t think the rooms at SVMH were bad. They definitely spent the upgrade money in the rooms at SVMH rather than waiting room, which was fine with me. 

The funniest thing to me was the fact I was seen by the oncologist, her NP, a transcriber, and a teaching student. No wonder Stanford told me they couldn’t have anyone else in the room. The room was tiny to begin with and with 5 people in it?! Definitely weren’t following the 6 ft rule. :P The transcriber was definitely something new to me. Guess that’s when you know a medical facility has money and they can hire someone to specifically take notes for the NP and Doctor for them. Nuts. Everyone was really nice. I also met the nurse. There’s also a nurse scheduler too. 

I liked my oncologist at SVMH and the NP I saw via video chat weren’t bad at all, but I definitely felt like there was a slightly different atmosphere around the Stanford team than SVMH. It wasn’t necessarily bad, but I guess the best way I could describe it is SVMH felt a little “tired.” Granted, my oncologist at SVMH is much, much older than the oncologist at Stanford. Actually, the whole team at Stanford felt like we were within 5-10 years of each other in age. My oncologist is fairly new at Stanford too (she’s been there about 2 years?). At any rate, I liked the team. 

Oncologist said she doesn’t recommend the trial to everyone who is HER2+, but given I’m “strongly” HER2+ and hormone receptor negative, there’s a good chance the targeted therapy drugs will work well to make up for the lack of 2nd chemo drug. 

Standard of Care: Taxotere, carboplatin, herceptin, and perjeta (TCHP)

6 rounds of 4 drugs, every 3 weeks (18 weeks) via IV

Clinical: Taxotere, herceptin, and perjeta (THP)

4 rounds of 3 drugs, every 3 weeks (12 weeks) via IV

The “TC” are standard chemo drugs. Often in the FB groups, you’ll hear people talk about finishing x-round of TC and that is in reference to those 2 chemos. The “HP” are the targeted therapy drugs for HER2. 

Going clinical trial, I’ll need to sign the liability forms, but she said after the 12 weeks, I’ll go back for a MRI. If she doesn’t like how it looks, then I’ll go back for more chemo. So, it’s as I said before, if it doesn’t work, I’ll just prolong treatment. If it works, I get less chemo. Obviously hoping for best case scenario!

She said they don’t recommend CT or bone density scan for stage 2B. They just don’t find it medically necessary. As much as it would be nice to have a “base standard,” I can’t say I’m disappointed about not getting it. It’s less imaging I have to do and less cost. So, if it’s not needed, fine!

They are trying to get my biopsy samples so they can verify the pathology findings. The radiologist is also reviewing my MRI. They found 2 unusual lymph nodes in the MRI, which is what my radiation oncologist at SVMH saw too. However, the radiologist at SVMH who looked at the MRI found 3. So, who knows. Whether it’s 2 or 3, it doesn’t change anything. The Stanford radiologist is still reviewing my MRI and will make a final report in the next few days.

I will do the port insertion with them. I assume that’ll get scheduled probably end of next week. I also have to sign the forms to do the clinical trial. They think in 2 weeks I’ll be able to start chemo. 

I did forget to ask about the shot to stick me into a menopause, though...Hmm. I’ll have to message them about that. In a weird kind of way, I’m getting a second opinion. Haha   

I will also have to do an echocardiogram every 3 months. I guess the herceptin (if I remember right) can cause the heart to have issues on squeezing. They’ve found if they catch it early, they can reverse it so I’ll be doing echocardiograms regularly for a while. 

Oh, yeah, after chemo and surgery, I’ll do HP treatments for a year afterwards. Not sure if it’s still every 3 weeks or not, but they’re also much milder than TC (or only T in my case) so it’ll be easier (she says). They are IV drugs so I’ll be getting very comfortable being in infusion centers over the next year...But, that’s getting ahead of myself. The first thing to do is get through chemo. Then we’ll know which path I’m taking after that. 

Other than that, I don’t think much else “earth shattering” happened. I did take a 15 minute nap on the way there. Poor Chris. Haha I told him I was tired when we were driving up! And the car was nice and warm. Plus, no matter what age I am, I can fall asleep in a car easily. :) 

Adulting and Waiting

Something to be said for verifying your bills before you pay them (aka adulting). 

Why in the world is this bill making me pay 3 of 4 things that have had insurance adjustments, but the 4th doesn’t? It would make sense if it was the only thing listed, but I had another 6 things “waiting” on insurance that were not factored into my payment. How does that make sense?!

I’ll have to call them. I watch my claims on Anthem so I know what I should be paying and what the insurance adjustments will look like. I don’t want to pay that and end up with a credit or something. That’s obnoxious on its own and sometimes messes things up more. 

I had my echocardiogram today. After finally getting everything approved to do (bone density, echo, CT, and port), I got the call Friday morning that everything got scheduled. I contacted Stanford shortly afterwards, but they didn’t get back to me till after 5pm. They wanted me to cancel everything except the echo so they could determine what imaging needed to be completed. They also said they could expedite anything I did need. I had been low-key stressing about it all weekend (not sure why, but only came up when I was trying to sleep...). Called my doctor as soon as their office opened today and got a call back later from one of the NPs wondering why I wanted to cancel since Dr. Aziz had ordered them. So I explained about doing the clinical. I knew the bone density was (literally) in 2 hours and I could go to that if they couldn’t cancel. After speaking with her, she said they’d go ahead and cancel everything but the echo to make it easier if they wanted them done they didn’t have to request the results from SVMH then. She was understanding, so that was nice.

Of course the echo was super easy since it’s an ultrasound of the heart. I was in and out in an hour. It did make my tumor hurt a little afterwards. Stupid thing has been hurting off and on the past 2 days. Anytime someone messes with it or near it, it makes it twinge. Most of the time, it doesn’t hurt so a twinge isn’t bad, but I instinctively want to rub at it and Chris is always telling me to stop before I realize what I’m doing. My excuse of “it hurts” just makes him yell at me more. Haha My incision points still hurt occasionally so sometimes I can’t tell which is hurting till I find the pain point too. That excuse doesn’t work either. :)

Now it’s a matter of waiting for my appointment on Friday. This is the start of week 3 of “waiting.” It’s the most irritating thing right now. I want to START so I can get this over with sooner! The longer this drags out, the longer into the year this goes and I want to be done before the end of summer. I also feel like anything I plan to do at work I need to put a mental “tentative” sticker over it in case things change. It’s not fun when you’re a planner and like to be reliable for people. Also, there is that part of you that goes “is the tumor getting bigger? Is it spreading more?” So, yeah, I know once it gets into gear it’ll be full blast, but this snail pace is killer. 

Sometimes I feel like I’m staring at a pendulum swinging back and forth and back and forth...

On that note, there was an update to my pathology report. 

Those “micro-calcifications” found were reclassified (for lack of a better word) as a “sclerosing adenosis.” Actually, the pathology report said, “they were better described as.” What in the world does that mean? Sounds like the pathologist isn’t even quite sure what it is, but knows they’re not calcifications. Cool...

Google came to the rescue and basically I have a bunch of extra tissue growth in one spot in my breast. They’re benign and oftentimes don’t need to have anything done to them unless they cause pain. Because of the way they look on mammograms, there is no way to determine what it is till biopsy. 

There isn’t much known in terms of them being predictors for breast cancer; however, a few studies have suggested they may be an indicator of a higher risk for breast cancer (remember, they’re benign so can’t become cancerous). I mean, if you think about it, kind of makes sense. Your body is producing extra tissue. Itself is not cancerous, but it does mean your body is producing something not “normal.” 

Chris just looked at me and went “why is your body producing so many “extra” things?” Haha

At any rate, I assume the surgeon will remove the tissue at time of the lump since they’re nearby. I think that’s the mystery spot on the MRI near the lump they called the “linear mass” anyway and the radiologist who viewed my MRI suggested removal at time of surgery. 

With that...I’m on to the wait game till Friday!