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).