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!

Staging

I get asked a lot what stage is my breast cancer. I haven’t been formally informed because they don’t like to stage you before surgery. Surgery can change what stage you’re in, especially when lymph nodes get involved.

On that note, I’m at least stage 2. 

One reason I know this is the clinical trial is for stage 2 to 3A. Oncologist wouldn’t suggest it if I didn’t qualify.

Second, simply by reading. Specifically, I’m stage 2B. Each stage has a further breakdown depending on size (or number) of tumor and number of lymph nodes. 

Stage 3 is when it’s in the breastbone or chest wall. Stage 4 is when it’s spread other places (metastasis).

Here’s a breakdown of 2A and 2B:

In general, stage IIA describes invasive breast cancer in which:

• no tumor can be found in the breast, but cancer (larger than 2 millimeters [mm]) is found in 1 to 3 axillary lymph nodes (the lymph nodes under the arm) or in the lymph nodes near the breast bone (found during a sentinel node biopsy) or
• the tumor measures 2 centimeters (cm) or smaller and has spread to the axillary lymph nodes or
• the tumor is larger than 2 cm but not larger than 5 cm and has not spread to the axillary lymph nodes

In general, stage IIB describes invasive breast cancer in which:

• the tumor is larger than 2 cm but no larger than 5 centimeters; small groups of breast cancer cells — larger than 0.2 mm but not larger than 2 mm — are found in the lymph nodes or
• the tumor is larger than 2 cm but no larger than 5 cm; cancer has spread to 1 to 3 axillary lymph nodes or to lymph nodes near the breastbone (found during a sentinel node biopsy) or
• the tumor is larger than 5 cm but has not spread to the axillary lymph nodes

I am that highlighted section. So, this is why I say my tumor being 2.5cm is in the “small medium” scale. If my tumor was no larger than 2cm, I could have been stage 1B (assuming my lymph node cells were/are small). On the other hand, if I had 4+ lymph nodes involved (not my current suspected 3), I’d be in stage 3A (regardless of size). My 2B vs 3A might be a little close, but I’m still 2B!

Your cancer cell grade and receptors can also make a difference. Hormone receptor cancers tend to grade a little lower based on scales than my HER2+ even if they meet stage 2 criteria. 

I do have to say that I’m very thankful for the biopsy on my lymph node early. I don’t understand how people start treatment and then get their lymph nodes tested afterwards. At least in my case we know it’s spread. We just don’t know the extent of my lymph node spreading. It’s kind of comforting knowing in advance. Don’t get me wrong, it’s scary too because my body could be fast tracking cancer to other areas, but at least we know now. 

There is also a new system called TNM Staging. You can read about it here. 

In TNM, I’m T2, N1a (I think), M0

Doctors, Doctors, and More Doctors

Going backwards...

Consult #1: Surgeon - Dr. Guiroy

Surgeon asks me what I know about what I have and I rattle off: IDC, grade 3, lump and lymph node in my armpit tested positive, calcification is assumed benign, HER2+, HR-. She looked at me and said, “Are you a scientist?” We all chuckled. So I had to explain my background. I guess not everyone is that aware of their cancer by their first consult? 

She asked what I was hoping to happen. I told her I was hoping to avoid a mastectomy and, of course, chemo and radiation. She explained that a mastectomy is definitely not needed. She said the MRI had found that my lump was largest at 2.5 cm. I asked if that was considered small, medium, large? She kind of hem’d and ha’d and I said, “medium?” She said, “yeah.” I assume I’m more on the “small-medium” scale. 

She explained that I would do treatment before surgery so I wouldn’t see her again for at least 6 months. Treatment pre-surgery (called neoadjuvant) has a chance of causing the tumor and lymph nodes to shrink (side note: this was the first time I really realized the “lump” as I had been calling it for months is actually a “tumor”. Lump sounds better haha). Smaller things means less surgery. 

She explained the lymph nodes. They could do a dissection, which is basically removing all or most of my lymph nodes in that area of the arm pit. You have several 10’s of lymph nodes in that area. By hoping to shrink things and using a dye, they may be able to find the cancerous sentinel node (the one that is actually transporting the cancer, there are 3 sentinel nodes I think?) and remove that one and a couple connecting to it instead of removing all or most of my lymph nodes. Any time you remove lymph nodes, you have to worry about Lymphedema (swelling in the limbs due to fluid blockage in the lymphatic system). A dissection puts me at high risk for it. By doing a sentinel node removal instead, we might prevent me from having Lymphedema (yes, please!). The biopsy done on my lymph node she says we don’t actually know which one it is because they’re close together. So she won’t be able to know till surgery. 

Funnily, after I spoke to her, I realized she never answered my “chemo” question. I wasn’t sure if that was because it’s not her realm of expertise or if she didn’t want to tell me I had to have chemo. Obviously no one wants know they have to have chemo. She did answer my radiation question and said that’ll be up to the radiation oncologist after surgery. 

She was nice, older, sounded German. I had a really embarrassing moment where I could NOT understand a question she asked me. I asked her to repeat herself 3 times. I felt so embarrassed! The masks didn’t help! She also told me my oncologist was basically “the” oncologist for SVMH. So that was nice to hear. She told me that this was her plan for me, but we would have to hear what Dr. Aziz (my oncologist said). She said, “he might disagree with me...Oncologists are...particular.” We all chuckled. 

Consult #2: Radiation Oncologist - Dr. Andrade

Young guy! I was kind of looking at him and thinking, “You’re at most 5 years older than me?” He was really nice, though. He asked me who I had spoken to and what treatment plan had been suggested and I told him. He also asked if anyone mentioned chemo and I told him that Dr. Guiroy had managed to not answer me, but I thought that was because that’s Dr. Aziz’s realm. He kind of did a thoughtful “yeah...” and then moved on. Once again, another doctor avoided the chemo mention as part of treatment! He did semi-mess up though as he was talking to me about treatment, he mentioned “chemo” as part of my treatment. At that point, I had done enough research on HER2+ treatment that I had very little hope that I was avoiding chemo so it didn’t really worry me. 

He explained that treatment beforehand for HER2+ has a high chance of causing the cancer to go away entirely. So there’s a chance I wouldn’t see him after surgery. I asked what the odds of that happening and he hem’d and ha’d and I asked “50/50?” And he agreed that 50/50 was good enough. So, that was nice to hear. 

He said for my type of cancer, he would recommend 25 rounds of radiation and, given my age (eye roll), an additional 5 for a total of 30. He said it’s 20 minutes each round, everyday of the week minus holidays and weekends. So, that is 6 straight weeks of radiation! We talked about potential issues. Immediate issues is the fatigue and the sensitive skin and peeling (it’s basically an extreme sunburn). He also said we have to worry about the heart receiving that much radiation. Of course, radiation also has a chance of causing others types of cancer (I knew that, but hearing it when you have cancer is a little like “what...?”). So there is a small possibility I may develop cancer from radiation later in life (he says it’s rare, but is a possibility). 

He also had received my genetic test so he was able to tell me I didn’t test for anything but the Variance of Unknown Significance (VUS) on the TP53. He said he had done some research and they find my type often in people of Asian descent, but they can’t determine, yet, if it’s an indicator of increase cancer risk or not. TP53 CAN be an indicator of increase cancer risk (all cancers), especially coupled with family history. TP53 is dominant so it can be genetically passed on to children. When parents or children are found to have the TP53, it’s often they find a history of cancer in the family. Scary. Some people with TP53 decide to not have biological children because of it (or do IVF to skip the gene). At any rate, they find TP53 often in children because children with rare cancers at young ages are a clear indicator of TP53. Where my TP53 marker is, there’s not enough known to make a determination. If my genetic’s lab ever finds out, I’ll get updated (benign or not). 

He was really nice and showed me my mammograms and MRI too. So that was cool to see and he explained it to me. The scientist in me found that fascinating. 

Consult #3: Oncologist - Dr. Aziz

Just like when the Doctor told me I had cancer, Dr. Aziz took a breath before telling me I was going to do chemo. I really would like to be the fly on a wall of a few patients who fall apart in anger or tears because do they expect me to have some “moment” because of my age? The fact I have cancer? I’m not sure. I mean, sure, being told you have cancer might cause a moment, but by the time you get to the part they tell you you’re doing chemo, I would think you’re set for chemo since cancer + chemo = common. Isn’t that what you normally hear when someone has cancer? They go through chemo? At any rate, I wasn’t surprised by the chemo.

He told me it’s 6 rounds of 4 drugs (2 chemo, 2 targeted therapy drugs for HER2+). It gets administered every 3 weeks. He did tell me, though, that there’s a clinical trial of less chemo that I could try (it’s once a week for 12 weeks). This national clinical trial was not being done at SVMH, but he could see if maybe Monterey had it, otherwise, he knew Stanford was doing it and he could get me in through there. He said if I went the clinical route and cancer was still found, they can hit me with more chemo after surgery if need be and radiation. If there’s no cancer left, then great. The real thing about the clinical vs traditional in terms of post-surgery is the extension of treatment if I don’t respond well to less chemo. 

How I see it? I can go traditional, get pumped up with all this chemo, and still come out the other side with cancer left and go through radiation (I could get more chemo too). I can go traditional, get pumped up with all this chemo, and come out with no cancer. Or...I can go clinical, get pumped up with less chemo, and still come out the other side with cancer left and go through more chemo after surgery (if need be) and radiation. I can go clinical, get pumped up with less chemo, and come out with no cancer AND HAVE LESS CHEMO. So, I don’t really see a downside on doing the clinical trial, except the travel. I do think I found the trial is being conducted at the Palo Alto Medical Foundation - Santa Cruz (Dominican Hospital) so hopefully that’s true! Be less of a drive for sure. I also feel some type of “obligation” as a person who is younger and a less complicated stage of cancer to try this clinical trial for the betterment of women after me. What if they do find that less chemo works as effective as the more chemo? Why wouldn’t I try to help women (and men) after me be subject to less chemo for similar results? Progress cancer treatments from the day of “throw everything at it to kill it” to something that’s more refined and just as effective. Or at least given women (and men) the option in having less chemo? In addition, it’s the same drugs. As Chris pointed out. It’s not new drugs or a new treatment plan that’s radically different. It’s the same drugs, same steps, it’s just one less chemo drug. So it’s not your typical “scary” clinical trial you often hear about. 

The doctor also explained this about the clinical vs traditional. He said SVMH asked to do the clinical trial, but was denied at this point. It’s in Phase 2 right now (that’s testing treatment, I think? Phase 1 I think is establishing protocols? Phase 3 is wide-range testing of treatment...?). 

He did tell me he is getting me scheduled for a CT, echocardiogram, and port-a-catheter insertion. I apparently also get a bone density test too. The CT is to make sure cancer hasn’t travelled anywhere else and to get a “baseline” (reality of my life...worrying about getting cancer somewhere else in the future). Echocardiogram is to make sure my heart is strong enough for chemo (that’s comforting to hear...). The port-a-catheter or “port” I had already decided on. I guess some places make it optional to patients, but SVMH basically doesn’t. It saves your veins in your arms from chemo. The port is inserted under the skin and goes directly into a main vein that goes to the heart. The port will be used to draw blood, chemo, etc. I’ll be getting poked a lot so it’ll help save scar tissue issues in the arms too. 

He lastly said that he’s going to give me a shot to put my ovaries “to sleep.” It’s basically a medically induced menopause. This will help them to not take in extra chemo if they’re not functioning like normal. Despite not wanting kids, because I’m young, he wants to leave my options open to me. Plus, given it’s chemo, I’d rather my body is subject to as little chemo as I can so I wasn’t against it ultimately. 

Consult #4: Chemo Teach with NP

Guess it’s not really a consult. It’s more what it’s named. It’s to tell me the process of chemo treatment and what to expect. This Chemo Teach was assuming I would do the traditional chemo at SVMH. Oncologist had told me he wanted me to do it just in case. We spoke for AN HOUR. My brain hurt so badly at the end! The plan was to have me start chemo on 3/31, but given it’s now 3/27 and I haven’t had any of my other appointments, it’s not going to happen by 3/31. I also want to do the clinical so I think that’ll change my timeline too. I’ve asked 3 people and all 3 of them say it’s insurance that’s taking so long. They have yet to approve anything. I guess I’ve moved on from the “optional” portion of my treatment (therefore they did it without prior insurance approval) to the “required” portion (my MRI was approved rather quickly, though? I even got a notice that was approved and doesn’t appear in my insurance claims). It can take anywhere from 5-10 days, but oftentimes a week. So, maybe early next week I’ll hear. 

She went over the process of chemo: 4 drugs (traditional) given by IV one after another over about an hour each. Before chemo is given, blood tests are completed to make sure my white blood cells count and other indicators are at an appropriate threshold to do chemo. So the first session will probably be 6 hours long because of all the tests and also they go slower in the beginning to make sure there’s no adverse effects. Time to stock up on books, movies, tv shows, notebooks, or whatever else to entertain myself for 4-5 hours. I do have an iPad and external battery is going to come in handy and my AirPods too. Snacks also...everyone says to bring snacks and a blanket. 

She went over side effects (nausea, constipation, diarrhea, etc), medications I’m to take and when, things to do at home given I’m not home alone, and all sorts of things. Chemo is CRAZY. When I’m being given chemo, I’ll also be given a steroid at the same time. I also get a steroid I have to take a few days after chemo. I also get an anti-nausea medication I need to take for a few days after chemo. I also got a lidocaine cream to put over my port site to help with pain (I’m thankful for that; I’ve heard other people find it super sensitive and have to ask their doctor for the cream so I’m glad mine gave it to me without asking). I also get a white blood cell growth enhancement thingy that auto-injects about 24-36 hours after chemo. It’s to help build my white blood count. She said bone pain is also common because the platelets in my bones are also being destroyed by the chemo. I can take over the counter meds for that. I’m thinking in my head “Am I going to have growing pain feelings at 35?” 

Hair loss will also happen. Oftentimes it happens right away with chemo, but will start to grow again shortly after chemo ends. Fatigue is normal too. She said to drink lots of water to flush the chemo out and to make sure my diet is good to help because my system will be messed up. She said to take it easy. 

I asked about the Covid vaccine and she said it’s pretty much too late for me to get it. It’s too close to chemo and we’re not sure how I’m going to react to chemo. She said if I’m doing well through chemo and they have a good grasp on how I do between treatments, maybe I can get it during treatment. Otherwise, everyone in my house getting it is a good step and we can hope that I still have antibodies leftover from Dec. 

One part that made me laugh is she told me to flush the toilet twice and close the lid after I pee for a few days after chemo. She said I’ll be peeing out chemo. She said it’s not a big deal (no one is going to have hair loss or start glowing), but to be on the safe side. It made me giggle thinking about the toilet glowing from the chemo I’m peeing out. 

That was pretty much the most of what we talked about. It was a lot of information. 

When I think about all my treatments and how long they last, if we go by the timeline I’ve been told now, it’s 18 weeks of (traditional) chemo/targeted therapy, I assume another 4 weeks before surgery, surgery, and then 6 weeks of radiation (I assume that starts 2 weeks after surgery? Complete guess). That’s 30 weeks of treatment. I’m looking at 7-8 months down the road I might be over the main part of this. Once those are all done, there are still follow-up tests and then starts the regular follow-ups. Talk about a long haul...

I know treatment alone can wear you down, but I think it’s now occurring to me the length of treatment is the real strength killer. So many women I’ve heard who stumble because of how long you continually go through this. I know my support system is good and I think I’m strong enough, but I also have to be realistic that I am going to have down days and those are okay and I will need to pick myself up again. I am trying to take this daily, though. I’m trying to not look too far in the future. I’m trying to not think about the side effects people have spoken about or to think about them. I may have an easy, breezy time of this and the time might fly. Or, it might be brutal and the only way to get through it is day-by-day anyway. Here’s hoping for more good than bad days. 

The meaning of hair

The one phrase you hear a lot is “it’s a personal decision.” There is no “right” way. There are medically suggestive routes and there are decisions that I have to be willing to live with. Some of those decisions give a whole new meaning to “live with.” 

I’m skipping over several days worth of updates, but what’s triggered this post is HAIR. It’s not my clinical trial vs traditional route for chemo. It’s not lumpectomy vs mastectomy. It’s not do I get a second opinion or not. It comes down to hair. 

You hear about how hair can be a part of your identity. Stars in roles for long periods of time are told not to change their hair. I’ve seen women cry on America’s Next Top Model when they went through their makeover and had to have their hair cut or drastically changed. Our society frowns upon bald women and men, but are more acceptable of bald men since it happens more often with them; however, if we were completely accepting of it, there wouldn’t be so many hair loss products for men AND women. Men and women cut, style, dye, and highlight their hair to “look their best.” Sure, some cuts and styles may be a personal/functional aspect, but still. 

When I found out I was going to do chemo, I wasn’t surprised, but then I started thinking about my hair and going bald. Chris was all, “We’ll buy you wigs and play with styles and colors.” I figured I have enough baseball caps that at least I’ll have an excuse to wear them. However, I had heard about cold capping from the FB groups. 

Cold capping are caps you wear a little before, completely during, and a little after chemo. The idea is that these caps are cooled to temperatures in the double digit negative degrees and will help shrink the blood vessels to your hair. The shrinking will prevent chemo from reaching your fair follicles and, therefore, saving your hair. The unfortunate thing is not everyone saves their hair (proper usage, types of chemo, health of hair) and some people get patchy baldness (usually improper usage). I HAVE heard/seen women in the FB groups who have saved their hair (they often say they save about 70-80% of their hair, that it thins rather than all comes out). There are frozen caps (they get frozen and you switch them out) or mechanically cooled caps (electric so coolant is pumped through it to keep a more even temperature throughout the head). The mechanic ones are considered the better ones (simply for the even temperature without switching). I looked up the cost of one frozen cold cap company and it’s about $370/month and a deposit. 

This is that moment where you weigh what your hair means to you personally. I’ve decided hair falls into 3 types of categories: vanity, normalcy, comfort. 

Vanity: My hair is my favorite feature. I don’t do fancy hair cuts, dye, or highlights, but I have thick, healthy hair that’s a color that isn’t flat or boring. We’re all vain enough to want to have our hair looking somewhat nice at some point (yes, some of us hair care more than others). 

Normalcy: Society says that women have (should have) hair so people don’t bat an eye when you have hair. It’s normal. Having hair is normal for me. I’ve never NOT had hair. People don’t think twice when they see me because I have hair. I don’t look at myself in the mirror differently with hair. 

Comfort: This is a little like normalcy, but it’s different. I’ve found some people “hide” behind their hair. It’s not so much the normalcy factor, but also the comfort of the norm. I’ve heard parents of young children appreciated having their hair because they looked less sick to their kids. This comforted those around them that they’re not as sick as they seem. 

So where am I?

Vanity: My favorite feature, but, really, you also have to think the other side...Will I look good bald? Some people look good bald. Some don’t. Is my head weirdly shaped underneath the hair? In the end, I found that this isn’t as big of a deal to me as it’s a little more curiosity than “worry”.

Comfort: Not really an issue for me since I don’t have kids and it’s really Chris who will see me regularly. He’ll be so involved in caregiving for me that it’s really not even a problem because I know he’ll already be overboard on making sure I’m okay whether I look terrible or not. :) 

Normalcy: THIS is my spot. I can work from home and be fine being bald. I could see people who know I’m going through chemo and be fine with it, but STRANGERS or employees who don’t know who see me bald? Nope. It’s not normal, which then people will probably look and try to guess why and then it might be questions or looks. This is what I have the biggest issues with. It’s not that I truly care what they think of me (that would be more vanity, right?), but it feels like letting strangers see a super personal part of my life out in the open. That’s what I don’t like. Now will people really care? Probably not. Will they even really think about me in 30 seconds? Probably not. I still don’t like it. 

Now it’s weighing how much “normalcy” vs cost means to me. Turns out, looking at $1200-$2000 to have a chance to save my hair is not worth it to me. That money can go to medical expenses or a future trip. I’m already not liking how much I’m spending on my medical bills and those are to save my life! Can’t justify the cost for my hair that will grow back...eventually...Ugh. (I wonder if I’ll get chemo curls? Oftentimes your first set of hair grows in super curly. Let’s hope I haven’t grayed, though haha)

Yes, I can do wigs. I’ve heard varying things about wigs from other breast cancer survivors. Yes, I can wear hats. But that’s not the same thing! It requires effort that, as many of you might know, I am lazy. Haha There’s a reason I get my hair cut 2-3 times a year and don’t wear make-up. A wig seems like effort...Course, I try to think of it as also “fun.” Hey, I’ve always wanted to try “this style.” I also might get to a point where I just don’t care, but I also live in a relatively cool place so I suspect hats will be a must to keep my head warm (bald men, I will be able to commiserate with you!). 

Despite my decision to go bald (I keep trying to tell as many people so I can come to terms with going bald), it’s kind of funny that it feels like one of the “hardest” decisions I’ve had to make. The least consequential decision to my life moving forward was the hardest. Go figure. 

Random Ruminations

Ruminations, random thoughts, little things that have popped up in my head this week...

• I now get lots of mail, but it’s all medical related. Lame.
• Patient intake paperwork is mailed now because of Covid. I spent 1 hour filling out paperwork for 2 locations. How/why did we do this in person before?
• All the forms say list “referring doctor.” Uh, which doctor? I literally saw 3 at the mammography center and there’s my PCP. Then there’s “who can we receive/share info?” All of them? Aren’t they going to loop you in anyway??
• I’ve never watched my medical claims more closely than I do now and rooting to hit my deductible (already met after the mammograms and biopsies)
• I’ve never had such a close encounter of health vs money. How do people pay for this with bad insurance? I’ve hit my deductible and am 73% through my coinsurance and my MRI isn’t even processed yet. 
• I’m really glad this happened early in the year and not late to maximize my deductible and coinsurance time.
• I was going to save my stimulus check for travel to England next year, but guess the Gov will help me pay a medical bill (yes, “a” bill...blah). 
• Spending money you saved not on fun things is lame...
• I’m trying not to worry that I won’t be able to travel next June to England. I feel like the trip is cursed...
• Actually, I’m worried I won’t be able to go to the Breeders’ Cup in Nov! Is live horse racing able to be part of my treatment plan?
• I might qualify for the Covid vaccine now (or sooner) because of my treatment.
• When do I get the vaccine, though?
• I giggled reading the breast reconstruction brochure about the different options. One option for filling can take abdomen fat/muscle. A benefit is you get a flatter stomach. In terms of shape, there’s a teardrop one (more natural), but has the possibility of rotating and then looking weird. Haha
• Is my housemate going to have to treat the house like Covid cleaning regimen again if I go through chemo? I feel like this past year has been the worst time to have a housemate in a 2 bedroom apt...
• Am I going to be able to use my new rower much this year? (Not that an elliptical would have been much better)
• When people ask me how I’m doing or what’s been happening recently, I realize how much it’s an automatic thing to ask. They might genuinely want to know, but 9/10 I am not going to dump what’s REALLY happening on to those people. People want happy, not sad. 
• My car battery died a solid death. It was 4 years old so it’s possible it would have died in the next year anyway, but barely driving it in a year definitely accelerated its death. Chris picked a battery that can take not driving it a lot because it’s possible I’m not driving my car more this year than I did last year. 
• Chris got the most amazing jump start battery! We tried to jump my car with another car with cables (Chris says they weren’t the cheapest ones) and no go (not enough to turn it over). He gets this battery and..30 seconds and BAM. Starts on first try every time. It’s pretty small too. It’s amazing! 5/5 highly recommend
• I’ve been eating like I don’t care. At some point I’ll have to go back to eating healthier either because I have to or because I should, but it’s a little bit of “YOLO” right now.
• How many cookies from My Cookie Dealer is it “acceptable” to have frozen before it’s a problem? Haha I don’t have any frozen now, but every restock I want to buy cookies...It’s bad. 
• I’m looking at my nail polish rack and wondering if I’ll be able to continue to paint my nails if I go through chemo/radiation (from an energy level). I guess a plus in this is it’s on my left side so I might save my right, dominate, arm/hand in the long run for painting. 
• Guess it’s a good thing I signed up for extra life insurance through work last year. I wouldn’t qualify for it now. 
• Drug commercial is all “do not take if you’ve had cancer.” Oh, well, guess that means me now. Weird. 
• Thing to look forward to regardless of what happens: BreyerFest! I signed up in January, but it’s in July. I might have to evaluate how many horses I actually get this time because, well, money needs have changed, but it’ll be something to look forward to and it’s all virtual. 
• I can’t wait till my consults next week are completed. I’ll have a better idea of where and what 2021 is going and will look like. Better idea of what to research and look into. 
• Monterey County is moving to red for Covid phase. We’ve been in purple or at the strictest level since the beginning. I feel like the world is opening up and I won’t get to enjoy it for long! Also, what does red even look like? Haha It’s like I’ve forgotten what indoor dining is...