9/5/19: (13 Days Post-DMX) NP Appointment - Drains Out + Pathology Results

Lots to report today!

When I called (two days ago) to make my appointment to get my drains out, the output was < 30 mL per drain per day for 2 consecutive days. After that, the output was < 20 mL per drain. I feel good about the drain output being even lower; I'm hoping it means I'll be less likely to develop a seroma.

Ken went with me to today's NP appointment. He had to drive me, plus I had a lot of questions, so I wanted him there to help make sure I asked everything on my list, and to be an extra set of ears to make sure I understood all the answers.

First off, getting the drains out didn't hurt at all, but I think that is mainly because my chest area is still numb! I didn't realize it before because I've generally avoided touching the areas around my scars, but as the nurse was cutting the sutures that held the drain tubing in place, I could only feel some slight pressure. The NP instructed me to take a deep breath, and she pulled the drain out during my long, slow exhale. I honestly felt nothing. Other people had warned me that it would feel "weird", and I'm sure it would have, if I could feel anything.

What was weird was how much tubing was inside me! It was like 10-12 inches on each side. Crazy.

I asked about the numbness, and the NP said it was normal. She said other patients sometimes reported feeling coming back in patches, first in one area, then another, etc. Maybe this is why I haven't felt much pain; any pain would be masked by the numbness!

I also asked about my range of motion, and whether or not I should be doing any arm exercises. She gave me 3 exercises to do, but emphasized that I am still in the "early" stages of recovery, so I have to be careful not to do too much just yet. (She said to expect recovery to take up to 6 weeks.) She said my current range of motion is about what would be expected, so it's too early to worry about physical therapy. If I don't see much improvement over the next few weeks, they can certainly refer me to physical therapy later.

She said I can start driving any time I feel comfortable, now that the drains are out. I think my arms are still weak, so I don't plan to drive any time soon. Definitely not this weekend. I'll see how I feel next week.

She also recommended I keep wearing the surgical bra and compression band at least through the weekend because the compression helps to prevent fluid from building up (which could lead to a seroma). Without the drains, any fluid that is produced now just gets reabsorbed into my body. After the weekend, I can gradually taper off the use of the bra and band as I feel comfortable.

I mentioned that my right underarm is more numb than my left, and the numbness extends down my arm almost to my elbow. She said it was too early to worry about lymphedema, and maybe my right side felt worse because I had more lymph nodes removed from that side.

So, our conversation naturally segued into my surgical pathology. I was pleasantly surprised when she said she had a copy of my pathology report for me! (Ever since I got the good news, I've been checking the online patient portal daily to see the actual report, but it hasn't been posted.)

I had 1 lymph node removed from my left side, and 5 lymph nodes removed from my right side (the side known to have cancer). No cancer was found in any of the lymph nodes.

The report indicated negative margins greater than 5 mm, which means no cancer cells were found within at least 5 mm of the outer edge of the removed tissue.

The left and right tissue specimens weighed about the same (within 2 grams of each other). I had wondered if more breast tissue was removed on my right side (which might explain my concavity), but the "depth" of the right specimen was actually 0.9 cm smaller than the "depth" of the left specimen. So I guess there's no obvious reason why my right side is a bit concave.

The surgical pathology report listed the size of my tumors as 14 mm and 10 mm. The cancer invaded the skin and involved the nipple.

I actually saved the most interesting piece of information for last. The pathology report also found cancer in my left breast!!! A tubular carcinoma, 4 mm. This tumor is probably what the MRI showed, the area that didn't show up on the mammogram or ultrasound, and that they wanted to biopsy (which I cancelled after I decided to get the double mastectomy no matter what). This certainly validates my decision to get a double mastectomy!!

So, ultimately, I had bilateral breast cancer. Both breasts affected, three tumors, all different types of cancer.

I'm just so glad and relieved that the surgery was successful, and all that cancer is out of me now.

8/28/19: The Nurse Called Me with Pathology Results - "Clean as a Whistle!"

SO RELIEVED!!!!!!!!!!!!!!!!

The nurse called me on my cell phone, but I didn't answer because the number was "PRIVATE". Previously, all phone calls from the hospital had come through with a phone number!! Grrr.

I tried to transcribe her message. I must have listened to it 5 times!!

"I'm delighted to call you with wonderful news. The final pathology came back, and they got everything. There is no evidence that [the cancer] has gone anywhere, it's clean as a whistle... Congratulations, this is great news!"

I'm hoping this means I will not need chemotherapy or radiation. I still might need hormone therapy to help prevent the cancer from coming back, since my cancer was ER+ and PR+. The nurse said she's off-site today so I'll call her tomorrow to ask about next steps.

Hooray!!

7/2/19: I Checked My Insurance Claims Online

After getting that MRI bill, I wondered why I hadn't been charged for ALL those appointments and tests in May and June...

I logged into my online account for my health insurance. It looks like, since I reached my personal deductible already, my insurance is paying all claims in full.

Usually we get an insurance statement that tells us the full charge, how much the insurance will pay, and how much we should expect to be billed by the provider and/or hospital. But maybe they won't send us a statement if our expected charge is $0?

It does look like we should expect to be billed for some office visit co-pays, which I don't remember being asked to pay on the day of the appointments...

Below I am listing all the new claims so far. Unless otherwise noted, we paid $0. Apparently, this is how much it costs to have breast cancer in America.

(Incidentally, our insurance coverage changed on July 1. Our deductible balance was re-set, and our new plan has a lot of up-front costs before insurance kicks in. So I expect we'll have more to pay starting with the breast surgeon appointment.)

5/13/19: Mammogram & Ultrasound Hospital: $857
5/13/19: Mammogram & Ultrasound Radiologist: $246
5/16/19: NP Appointment: $422 (I owe $20 co-pay.)
6/4/19: MRI Radiologist: $377
6/4/19: NP Appointment: $83 (I owe $20 co-pay.)
6/13/19: Biopsy Hospital: $3,074.54
6/13/19: Biopsy Pathologist: $256
6/13/19: Biopsy Pathologist: $858 (Separate charges for each sample?)
6/13/19: Biopsy Hospital (Pathology Lab?): $2,420
6/17/19: Hospital (Pathology Lab?): $650 (Presumably related to biopsy.)
6/20/19: Mammogram & Ultrasound Hospital: $791
6/20/19: Mammogram & Ultrasound Radiologist: $370
6/20/19: Genetic Counselor Appointment: $212 (I owe $60 co-pay.)
6/20/19: Genetic Testing: $1,500

Sub-total: $12,116.54
With insurance, cost to me: $100

Total cost to date: $17,724.22
With insurance, cost to me: $520

Notably, this current total reflects only my diagnosis. I haven't even received any treatment yet!

6/21/22: Pathology Report

I saw my pathology report online on Tuesday, but I wanted to wait to hear from the doctor before posting anything. I haven't heard anything yet, though, so I just decided to post anyway. 

According to the report, the fallopian tubes were "unremarkable". There was a 1 cm ovarian cyst in both ovaries, and the right ovary had an additional 0.6 cm paratubal cyst. 

I assume everything is fine because there weren't any alarming words like "carcinoma". 

I'll post again if I hear anything more.

9/13/19: (3 Weeks Post-DMX) Breast Surgeon Appointment

I had my post-operative follow-up appointment with my breast surgeon. Ken came with me. I am actually a little sad that this will probably be the last time I see this doctor. He is so calm and respectful and has a reassuring presence.

He looked at my incisions and said they are healing nicely. I asked him about the continued swelling and numbness - not visibly problematic, but I can feel them - and he said it was normal, to just give it time.

I told him I was still wearing the surgical bra and compression band at home (I didn't wear them to the appointment), and he said I could stop wearing them. Interestingly, even with no garments, my chest area still feels tight and constricted. I think it's what some people in the Facebook support groups call the "iron bra". I think the feeling is supposed to go away, though a few women have said the feeling lingers.

He asked me to raise my arms to the side, and my range of motion was limited enough that he referred me to physical therapy. I have my first appointment scheduled for next week.

I asked about getting a prescription for the contoured, custom-made prosthetics he mentioned at our first meeting. He said my NP can give me the prescription and information on how to fill it. I'm still not sure if I want them, so I'll just keep it in mind, just in case.

We also talked about my surgical pathology. As I already knew from my last NP appointment, he got clear surgical margins, and there was no evidence of cancer in my sentinel lymph nodes. I am so thankful for this man's surgical skills. He declared me tumor-free! I think this means I don't need radiation.

But, he said there was one "hiccup". My NP had already told me about the 4 mm tumor that was found in my left breast, but at the time, the HER2 status was still pending. The results came in, and this tumor was HER2-positive. Combined with being ER-positive and PR-positive, that means this cancer is triple positive. (My original two tumors were both HER2-negative.)

HER2-positive cancers are usually treated with Herceptin, which is commonly administered with chemotherapy. But, since the tumor is "tiny", chemotherapy is not clearly necessary. But, since I am considered young, that generally means the cancer was more aggressive, so chemotherapy might be recommended. Plus, being young and healthy, chemotherapy is not as risky as it would be if I were older or if I had other health issues. If I do get chemotherapy, it's possible I could get a lighter regimen. He said my case is squarely in a grey area. The tumor board will likely discuss my case next Wednesday, in time for my medical oncologist appointment on Thursday.

When my surgical pathology report came back "all clear," a lot of people assumed that was the end of my treatment. Why would I need chemotherapy, if the surgery removed all the cancer? I, too, had had this question. The answer is explained succinctly in this brief video (with transcript). Basically, cancer is a systemic disease. Tumors are localized symptoms, and surgery and radiation are localized treatment that specifically target tumors. Chemotherapy and hormone therapy are systemic, whole body treatments. Surgery is frequently just the first step of treatment.

Anyway, I'll have a 6-month follow-up appointment with my NP.

Since the surgery, I've been mostly focused on my physical recovery, and working a bit on my emotional well-being, but now I am quite anxious to know what my ongoing treatment will look like.

So, after this appointment, Ken and I went out for a really nice lunch at a new-to-us restaurant. It was my first time being flat out in public. I wore a poncho-like wrap that a good friend very thoughtfully gave me just the other day, knowing I am looking for new clothing options that will hide my flatness. As it turned out, in this wrap, I felt so comfortable in my flatness that I was more self-conscious about wearing uncharacteristically fashionable clothes. Hahaha.

9/23/19: I Got Billed for Surgery

My online account for my health insurance shows a LOT of activity, but I figure I won't log any costs until I actually get billed.

I honestly don't understand some of the online health insurance statements. There are claim summaries and claim details, and sometimes none of the numbers match up in any way. I can't make much sense of it.

The printed statements we get in the mail are more comprehensible. Mostly I just look at the "Provider Charge" and "Your Responsibility" amounts.

The amount we get billed should match the "Your Responsibility" amount on the insurance statement. Before we pay, I cross-reference those values to make sure they match up.

8/23/19: Surgery Hospital (Pathology Lab?): $3,643.00
With insurance, I paid: $995.76

Total cost to date: $21,759.00
With insurance, cost to me: $1,891.43

7/12/22: (3.5 Weeks Post-BSO) GYN Surgeon Appointment

Today was my scheduled post-surgery follow-up with the GYN surgeon.

Thankfully, all the bruises have been noticeably improving, so that was one less thing I was worried about going into this appointment. 

The right incision is healing almost perfectly, there is just a very small bump underneath. I think it's scar tissue. The doctor was unconcerned and said she thinks it'll go away on its own.

The bigger lump of scar tissue under the left incision is still there. The doctor said to Google "C-section massage" and apply the same techniques. The incision area isn't swollen anymore, but it's still puckered - the doctor used the word dimpled - and she said it can take up to 4 months for everything to settle down. (I appreciate having my expectations set appropriately.) She said she thinks it will eventually look normal, but it's possible the incision will create like a "shelf" (or "pooch"), which is exactly what has happened with my C-section scar. Unlike the blog entry I just linked, I don't mind it, I hardly ever think of it, and it doesn't bother me. So, on the one hand, I'm used to my C-section scar, and it's fine if the left incision heals similarly; on the other hand, the right incision already looks basically normal, so it'll be a shame if the left incision doesn't heal the same way.  

Finally, the doctor said there was nothing concerning in my pathology report, and it's okay to sleep on my belly now.

After she assured me everything surgery-related was fine, I told her about an unusual symptom I've been having, which is that my right leg started to feel numb last Friday. It's a very mild numbness, like the neuropathy in my first three fingers on both hands (which is a lingering side effect from chemo). I feel it most in the 4th and pinky toes on my right foot, but sometimes my whole right foot feels a little numb and tingly, sometimes it's in my right calf, sometimes through the knee, and sometimes all the way up my leg to my right hip. 

The doctor said any surgery-related numbness would have occurred immediately after surgery, so this one popping up 3 weeks later means it's not because of the surgery directly. I remembered that I had some bizarre, unexplained numbness in my hands after breast surgery and chemo, and at one point I thought that maybe sleeping on my back all the time was pinching my nerves, because sleeping on my side seemed to help. This time, though, I have been sleeping on my side a lot. The doctor said it's possible that might be the problem; sleeping on my left side might be stretching the nerves of my right leg. She suggested placing a pillow between my legs when sleeping on my side, or changing my sleep position. She didn't seem worried, and I guess I'll just follow up with my PCP or oncologist if it persists.

Meanwhile, I also remembered that my physical therapist used to talk a lot about "getting the lymph flowing". At the time she recommended the Instagram account of a physical therapist who specializes in oncology. I like this account a lot and still follow it, so I looked up some lower body exercises for the lymphatic system. I figure it can't hurt to do them.

12/5/19: Medical Oncologist Appointment

My medical oncologist appointments are usually on the same day as chemo treatments, but my doctor will be out of town tomorrow, so I got scheduled to see her a day earlier.

We went over my side effects. Every winter, the back of my hands get very dry, and I need to moisturize, moisturize, moisturize. This year, in addition to just being dry, I have a red, bumpy, itchy rash. My oncologist was confident that chemo is the culprit. Skin rash is listed as one of the many possible side effects of Taxol. She suggested a thick cream like Eucerin, or an ointment like Aquafor.

Regarding my hair, I told her I feel like Gollum from Lord of the Rings.

She said, "No! I won't let you think of yourself that way!" Instead, she suggested I think of myself like Jean-Luc Picard. In the past, she has also offered up young Sinead O'Connor as an example of a beautiful bald person.

 

Neither of those two fit, though, because I really do have straggly long hair like Gollum. Okay, that's an exaggeration. But at this point, the few strands of hair I do have aren't hiding the baldness at all. They just make it look worse. I didn't shave my head before because I was holding out hope that maybe I wouldn't really lose too much, like my aunt who had chemo years ago, whose hair thinned only enough that she noticed it, and others didn't. But now that I'm wearing a hat all the time in front of other people, there doesn't seem to be a point to not shaving it all off. I can't think of any redeeming value for keeping around what's left of my hair, especially when looking at it sparks the opposite of joy. If I shave it off now, at least my head will look uniform, and when the hair grows back, it'll come in all the same length. I'm going to think about it.

Anyway. Since I'm closing in on the end of chemo, I wanted to clarify how long I'll be getting Herceptin, the targeted therapy that I will continue to get via port infusions every 3 weeks after chemo ends. I thought I was supposed to get 1 year total, and I was trying to figure out whether or not the 3 months I already got at the same time as chemo count towards that 1 year. My oncologist said she thinks I'll get 17 more treatments, which works out to 51 more weeks, which is basically another full year. She said she would double-check and confirm the numbers, but really it doesn't matter. Whatever the treatment is, I'll just show up.

After talking about the Herceptin schedule, my oncologist also mentioned that after chemo ends, I'll start another part of my hormone therapy. At my first appointment, I remember she said I would be getting Tamoxifen. But today, she said "exemestane". I would not have been familiar with this word at all, except I just happened to do a lot of research over the weekend on my presumed Lupron + Tamoxifen regimen. I read these articles:

2018 ASCO [American Society of Clinical Oncology]: Aromatase Inhibitor Plus Ovarian Suppression Yields Benefit in High-Risk Premenopausal Patients With Breast Cancer

Adjuvant Endocrine Therapy in Premenopausal Women with Breast Cancer (From the web site of The National Center for Biotechnology Information, a part of the United States National Library of Medicine, a branch of the National Institutes of Health.)

Basically, for hormone therapy in pre-menopausal women with ER+ (estrogen receptor positive) breast cancer, there are three options:

1. Tamoxifen. This is a pill that blocks estrogen from binding to estrogen receptors in breast cancer cells. Tamoxifen is generally considered standard treatment.
2. Ovarian Suppression (OS) + Tamoxifen (T). My pathology showed that my cancers are strongly (>95%) estrogen positive, which means the cancer cells feed off estrogen a lot. I am getting ovarian suppression via monthly Lupron shots. The ovaries are the main source of estrogen in the body, so suppressing them (via a chemically-induced menopause) drastically reduces the amount of estrogen in the body. Other parts of the body still produce a little bit of estrogen, so Tamoxifen is still needed to block whatever estrogen is present. This is the regimen my oncologist mentioned at our first meeting.
3. Ovarian Suppression (OS) + Aromatase Inhibitor (AI). Aromatase is an enzyme that is needed for the body to produce estrogen. An aromatase inhibitor, like exemestane, stops the production of estrogen in the body. With Lupron suppressing the ovaries, and exemestane stopping the production of estrogen from other sources, there is no longer any estrogen in the body to feed cancer cells with estrogen receptors. This is the regimen my oncologist brought up today.

In discussing OS+AI, my oncologist straight up said, "Women hate it." I appreciated her honesty, though I was already familiar with the sentiment from my own research. From what I've read, there are so many potentially debilitating side effects from OS+AI that quality of life can be drastically reduced. A lot of women choose to stop taking an AI because they just can't stand it. But, it is the most aggressive treatment that has the highest likelihood of preventing recurrence. 

The articles also point out that the studies show that the benefits of OS+AI hold true only for women at "high risk" for recurrence; there doesn't seem to be any added benefit for women at "low risk". Again, I'm in that grey "intermediate" area. The fact that I'm getting chemotherapy at all nudges me into the "high risk" category. I'm not very young (< 35 years old), but I'm still considered "young", which is another risk factor. My tumors were small, but I had 3, so my body has some kind of environment conducive for cancer growth. I guess it's enough for my oncologist to want to err on the side of caution, and pursue the more aggressive treatment.

It occurs to me that if I'm recommended for the most aggressive treatment, and if side effects really are unbearable, I can always switch to Tamoxifen. It may not be as effective, but it's still effective. Tamoxifen, of course, has its own list of side effects, but apparently they tend to be more manageable than those from aromatase inhibitors. 

Why I'm Getting a Double Mastectomy

Since I've starting sharing my news, and this blog, with friends and family, I've had a couple people ask me why I'm opting for the double mastectomy, when only a single mastectomy of my right breast is medically necessary.

First, I think it's important to note that such a decision is obviously very personal, and every patient needs to make their own decision based on their diagnosis and medical history, in conversation with their medical professionals, and taking into consideration their own priorities and feelings about self-image. Each person's thought process will be unique to them, and what feels right to one person might not work for someone else. This post is just a record of my personal decision.

If you ask me to describe myself, I would say I am nothing if not thorough! (As evidenced by this blog...) But in choosing words to describe me, a close second might be "risk averse". I will always wear my seat belt, I will always bring along an umbrella, or a light jacket, just in case.

This whole process - from finding the lumps to making appointments and having mammograms and ultrasounds and then an MRI and biopsy and waiting for phone calls with news - has been super stressful. I NEVER want to go through it again.

At this point, my doctors and nurses have told me that my MRI shows "something" in my left breast. That means it's possible I already have cancer in my left breast. Also, the "variants of unknown significance" in my genetic testing say I "may" have a hereditary risk; it hasn't been ruled out. Combined with the fact that I do have a family history of breast cancer (two paternal aunts had it), all of it together means there's a real possibility of having to go through this whole process again in the future for my left breast. Just, no.

I might have worried about being overly aggressive by opting for the double mastectomy, except my breast surgeon characterized the decision as a "shared decision" established by us both together. It definitely offers the most peace of mind, which is important to me as someone who is prone to anxiety.

My top two priorities right now are:

1. Get rid of the cancer that's in me now.
2. Reduce the risk of cancer coming back.

Even with a double mastectomy, my NP says there's still a 1-3% chance of recurrence. It's not 0%, but if that's the lowest possible risk, I'll take it.

Secondary to reducing my risk of recurrence and increasing my peace of mind was considering my self-image. It's hard to know how you would feel in a situation until you are actually in it, but the idea of being "lopsided" actually makes me feel more uneasy than the idea of just being symmetrically flat. I'm not worried about questioning looks or judgmental comments, I'm sure to get those either way.

With a single mastectomy, I could still opt for reconstruction or wear a prosthetic, but from what I gather, they don't always look symmetric anyway. It would just be one more thing to worry about before leaving the house, like, "Do my boobs look even?" And for someone who already doesn't prioritize fashion or style or appearances in general, it just seems like something I'd rather not worry about.

One thought that did occur to me was, if I were younger, and still planned on having children, I would absolutely want to keep my left breast in the hopes of breastfeeding any future babies. But I don't plan on having any more kids. I appreciate that I was able to breastfeed both my kids, and I feel like my breasts have served me well. It's okay if they have to be removed. Like one of my aunts pointed out, a breast is not a vital organ.

So, interestingly, I find myself having kind of a Marie Kondo type attitude. Haha. Due to the cancer, my breasts no longer spark joy for me. Before getting rid of them, I am thanking them for having served their purpose.

9/5/19 Update: After my surgery, the surgical pathology found cancer in my left breast, validating my decision to have a double mastectomy!

8/22/19: Day Before Surgery

Well, tomorrow's the big day.

I know I complained about the surgery not being earlier, but I think the timing did end up working out well.

I'm so thankful that we were able to keep all our original summer plans. And the two weeks between our last family trip and tomorrow's surgery was just enough time to get everything done, including preparing and freezing a few meals, and school shopping for the kids (clothes, shoes, supplies, EpiPens/Auvi-Qs).

I also seemed to have a kind of nesting instinct, like I wanted to get the whole house in order before my surgery. It's like when we leave on vacation, I try to tidy up because it's so much nicer to come home to a clean house. I just wanted to get everything into a respectable shape beforehand, before I go "off duty".

The only thing that didn't get done at all is gardening, which I haven't tackled since before our trip to North Carolina in July. So our yard (except for the grass, which my husband mows) really is as unkept as it looks. Ha.

I'm feeling alright. It's a bit surreal, but I feel level-headed. Mostly, though, it's weird because I feel like the surgery itself is the Main Event, and then everything after that is still a big question mark, hidden behind a metaphorical curtain. I hope I will feel a sense of relief once the cancer is physically removed from my body. But will the surgeon be able to get all the cancer out? Has it spread? What will my pathology report say? Will I need chemotherapy or radiation? What about hormone therapy? How will my recovery go? What will my scars look like? How will I react to them?! What will it feel like to have no boobs?!?

Well, I'll let you all know how it goes. I've asked Ken to make a blog post after my surgery, to update all you faithful readers as soon as possible. Thank you so much to everyone who is taking the time to read my posts. It really means a lot to me.

9/2/19: (10 Days Post-DMX) I Looked at My Scars Again

Even though the nurse said I didn't have to wear the compression band all the time, I've been wondering if not wearing the band while sleeping at night notably affected my drain output? I decided to put it back on 24-7. I think I can tolerate it as long as I have the band-aids to protect and prevent blisters.

I'm debating if I should call the Breast Center when the output per drain is < 30 mL or < 20 mL? It's confusing getting inconsistent instructions.

In other news, I took my second shower today. It was not as hot and not as long as my first shower, plus I brought in a small plastic stepstool to sit on, and everything went fine.

Prior to surgery, body image-wise, I was most concerned about getting truly flat results, not being lumpy with extra skin. I know my breast surgeon did an amazing job, and I am definitely pleased with the neatness of my scars and the lack of excess skin.

I had come across the possibility of actually being concave in the chest, where the breast tissue was removed, but for some reason I didn't really worry about that. I think I figured it wasn't something that could be prevented. In Facebook support groups, threads about scars and excess skin and "dog ears" (flaps of skin that hang under your armpits and look like little dog ears) always referenced the surgeon and how skilled they were, so it was something I tried to control by talking to my breast surgeon about it. But comments on threads about being concave were more matter-of-fact, sometimes kind of resigned, like no one tried to blame a poorly skilled surgeon, it just sometimes happens.

Getting ready for my shower today, it was clear that my right side is more slightly concave than flat.

Back in the Facebook support groups, some women said that the space filled out and looked better over time. Other women said that they looked more concave while they had drains - because the drains actually suction fluid from the space - and it got better after the drains came out. Most women said their concavity was permanent.

My cancer was on my right side, so it's possible the breast surgeon removed more breast tissue from that side in order to get all the cancer out and ensure clear surgical margins. That's one more reason I'd like to see my pathology report (which isn't available on the online patient portal yet); it's supposed to include a section that describes the size and weight of each specimen.

Anyway, this is going to take some getting used to. Intellectually, I know the most important thing is knowing that the cancer is gone. But emotionally, I think it's going to be harder to accept my new body with this disfigurement. Flat, I was prepared for. Concave, not so much.

I am keeping this meme at the forefront of my mind.

7/15/19: My Friends Offered to Connect Me with Women with Breast Cancer

I am so grateful for a couple of my friends who have offered to connect me with women they know who have had breast cancer.

I can't tell who reads my blog, or when, so I don't know if these offers were spontaneous or in response to yesterday's post, but it doesn't matter. I am thankful for every offer.

Again, it is simultaneously inspiring and depressing knowing there are so many women out there who have or have had breast cancer. The rate is 1 in 8 after all.

Right now, I am wholly focused on the surgery and recovery. That's the first step.

I don't even know what kind of treatment I'll need in terms of chemotherapy or radiation or medication. I'll find out when I meet with a medical oncologist after the surgery, after the pathology results are in. Maybe then I might want to connect with someone who has been through the same kind of treatment I'll be having, to get a better idea of what to expect.

For now, I feel good about having someone to give me advice through the DMX process.

Later on, when I know my course of treatment, if anyone knows someone who has gone through the same or a similar treatment, I may reach out and ask for an introduction.

8/23/20: (1 Year Post-DMX) Cancerversary

Another date that marks another milestone. A year ago today, a skilled surgeon cut the cancer out of me. Once the pathology report came back clear, he declared me tumor-free. Later on, an oncology nurse used the term NED, no evidence of disease. (They were careful not to use the phrase "cancer-free" because it's impossible to know whether or not any rogue cancer cells are still lurking somewhere in my body.)

I'm not really sure how I feel. I don't think I feel particularly celebratory.

Cancer has hijacked my life for more than a year now, and I still feel like I'm in the middle of it. Surgery and chemo don't feel like they are "behind me". Some parts of my chest and underarms still feel numb from surgery. I know the numbness can actually be permanent, so I'm not expecting it to go away, but I guess I'm hoping I'll wake up one day and feel used to it. Like maybe it could feel familiar instead of weird.

Chemo doesn't feel "over and done with" either because I'm still wondering if the neuropathy in my fingers (and occasionally in my toes) could be a lingering side-effect. Plus I'm dying for my hair to grow back. I still wear a hat any time I leave the house. Yes, I'm grateful that my hair is growing back thick and black, but I hate the way it looks. It stands up more than it falls downward, and it looks like a helmet! Ugh! I really had no idea I was so vain. 

Side effects from hormone therapy seem to be getting worse. Thanks to the Lupron, hot flashes are common and annoying. Exemestane continues to cause joint stiffness. It's mostly in my fingers, but I can feel it in my legs, too. Any time I go up and down stairs, it's like it takes effort to bend my ankles. In the time it takes to cook dinner, my legs feel so stiff that sitting down to eat is a huge relief. And any time I stand up after sitting down, my knees crack. 

I have 2 infusions left for Herceptin. Still waiting for my port removal to be scheduled. Maybe once I'm past those two things, I'll feel more like I'm moving forward. 

I think I do feel frustrated. I miss feeling comfortable in my own body, and not being hyper-focused on ailments. I guess I feel kind of resigned, and wistful for my old self. 

Still, I'm optimistic that I'll one day feel "normal" again. This pandemic sure doesn't help, since nothing feels "normal" to anybody. Maybe when life out there settles into a "new normal", it'll be easier for me to do the same.

10/12/19: I Checked My Insurance Claims Online

With payment of the last bill, I met my insurance deductible, so all my remaining medical claims for the coverage year should be paid in full by my insurance.

I don't think the insurance company sends me any statements when I don't have anything to pay, so I logged into my online account to see what has been charged.

Like I mentioned before, I don't fully understand everything that's posted in my online account, especially in the claim detail pages. But the "Recent Activity" summary page lists two numbers, a "Claim Total" amount and a "You Pay" amount. I'm using the "Claim Total" in my "Total cost to date" tally. The "You Pay" amount for all these claims is $0.

8/23/19: Surgery Breast Surgeon: $9,754.00
8/23/19: Surgery Pathologist: $1,553.00
8/23/19: Surgery Hospital (Incuding Pharmacy, Anesthesiology, Radiology, Pathology): $18,716.15
9/17/19: Oncotype DX Testing: $4,620.00
9/18/19: Physical Therapy Appointment #1: $492.00
9/19/19: Medical Oncologist Appointment: $552.00
9/19/19: Medical Oncologist Hospital (Including Blood Draw/Lab Work and Appointment): $842.00
9/23/19: Physical Therapy Appointment #2: $250.00
9/24/19: Hospital (Blood Draw/Lab Work): $82.00
9/25/19: Port Placement Hospital: $5,789.98
9/25/19: Port Placement Surgeon: $1,162.00
9/26/19: Port Check Appointment (Bruise): $161.00
9/26/19: Echocardiogram Hospital: $1,133.00
9/26/19: Echocardiogram Cardiologist: $240.00
10/2/19: Physical Therapy Appointment #3: $375.00
10/3/19: Hospital (Including Blood Draw/Lab Work): $737.00
10/4/19: Chemotherapy Cycle #1 (Including Lupron): $11,601.92

Sub-total: $58,061.05

Total cost to date: $83,735.31
With insurance, cost to me: $4,193.16

7/14/19: I Got Advice from Women Who Had DMX

Online, a double mastectomy is frequently abbreviated as DMX or BMX (for bilateral mastectomy). PDMX or PBMX refers to a prophylactic double mastectomy, one that is performed as a preventative measure because the patient has a very high risk for breast cancer.

I personally do not know anyone who has had a DMX, but when I told a friend of mine about my DMX plans, she said she knew several! She offered to connect me with a good friend of hers who had the procedure done years ago. I am so grateful for my friend, and for the introduction she made.

Not only did my friend's friend have a PDMX, but her 2 sisters and a friend did as well, plus another friend had a DMX due to cancer. Wow. That's 5 women in her family/friend circle who have had the procedure. On the one hand, it's inspiring to know so many success stories. On the other hand, it's depressing that so many individual stories exist out there. 

I am beyond thankful for the incredible wealth of information that my friend's friend emailed me. She gave me her own tips, and then she also forwarded to me the advice that her sister gave her friend, and the advice that friend gave another friend! So that's 3 primary sources. 

My friend's friend compared all the advice to like getting advice when you have a baby for the first time. Everyone has their own opinion, based on their own experiences, and what works for one baby/family/mother might not work for another. But it's still good to gather all the different perspectives so you have an idea of the range of possibilities.

I appreciated that reminder because I did see variability in their advice. For example, one person said the hospital gave her "excellent" bras, the other said the hospital's bras were "awful". (They both had reconstruction.) Regarding drains, one person said they were "uncomfortable", another said she "didn't find them uncomfortable". I consider every piece of advice valuable because together they give me a better picture of what I might expect.

Interestingly, I noticed that all 3 women who gave advice had PDMX. I think this distinction is important. I think having a DMX in response to a cancer diagnosis adds a whole other layer to the experience... Getting lymph nodes removed adds another component to the physical recovery, post-surgery appointments additionally include medical and possibly radiation oncologists, and there's also the psychological factor of worrying about surgical margins and pathology results.

Speaking of psychological factors... I feel like women who opt to have PDMX are more likely to go into their surgeries feeling empowered. They must have been scared when they found out they have a high risk for breast cancer, but then they took their destiny into their own hands!

As a cancer patient, however, I feel more powerless than empowered. I guess the "double" part of my surgery is by choice, and I do feel good about that. But overall, I was blindsided by the whole diagnosis, and I feel like I'm being carried down the river of cancer treatment. I guess I can try to control the boat I'm in as much as possible - like it was my decision to have a DMX, and I can try to face this whole thing with positivity - but generally speaking, I just have to follow the current and see where this river leads. 

I also found it interesting that all 3 women said to stay away from online content, like other people's blogs and online forums, because they tend to be negative and lean towards experiences with complications. But I think that really must be an individual preference, because I do not at all regret joining the Facebook groups. I have found them to be so full of positivity and support! To me, they are spaces of inspiration and reassurance. I think they even help to lower my anxiety. Yes, there are women who post about all kinds of scary complications (and I can see how, for some people, it would be better not to go down those rabbit holes), but the responses always include calming advice and reassuring words. And there's definitely a fair share of women who post about totally smooth and complication-free surgeries and recoveries. I think I just appreciate knowing that I am not alone. Other women are going through similar, or even more harrowing, diagnoses, and they are coming through just fine. 

In addition to joining the Facebook groups, I also stumbled upon this blog, which I have found very helpful:

BC Becky: Never thought I'd want to be identified as a breast cancer survivor...

8/26/19: (3 Days Post-DMX) I'm Good + I Called the Breast Center

As I recover comfortably at home, I'm feeling encouraged by these "positive affirmation socks" that my cousin gave me!

Still no real pain, same soreness as before, but lots of itchiness under my compression band, especially where the drain tubes are pressed against my skin. Mostly I get relief by just lifting and gently shifting the compression band in the itchy places.

Padding around the house, I thought it might be fun to use my Fitbit to track my progress at being mobile. But it looks like Fitbit is not registering my gentle steps, so it's undercounting by a lot. Oh, well.

The range of motion in my arms is improving every day. I could barely reach my hair the first day after surgery, but today I'm able to brush my hair without much effort.

Among the hospital discharge papers, there were instructions for creating an online patient portal account. I disregarded it at first, because I knew I had already set up my account. But today I realized that the instructions were for a third online system! I went ahead and set it up, and it turns out that using this account, I can see reports that are not listed on the other account! I can't make sense of which reports go where; the radiologist's report of my biopsy is on this site, but the pathology report of the same biopsy is on the other site.

Finally, the discharge nurse had said I should expect a call from the Breast Center today about setting up a follow-up appointment this week. When I didn't receive a call by this afternoon, I called them. Turns out, I was misinformed! I have an existing follow-up appointment with the breast surgeon in mid-September, but I will probably not see him before then unless I have an unexpected problem. I just need to measure the output from my drains each day, and when each drain collects 30 mL or less per day for 2 consecutive days, then I should call the Breast Center to set up an appointment to get my drains taken out, which will probably be done by a nurse practitioner.

12/20/19: Chemo Cycle #12 of 12 + Medical Oncologist Appointment + (4 Months Post-DMX) Physical Therapy Appointment #11

Today was my last chemo infusion!!! Hooray!! At home tonight, we celebrated with a chocolate cake that Ken and the kids made for me, by request. Haha. They used a cake mix and store-bought frosting and it was delicious!!!!

My last chemo infusion just happened to coincide with the holiday season, so I prepared thank you / holiday gifts for everyone in the Cancer Center and Breast Center. I didn't think to take a proper picture at home, but I snapped this photo in the car before going in.

Each gift bag or mug is filled with tea bags, honey sticks, and candies. I put 12 gift bags into a basket, and gave a basket each to the Cancer Center 1st floor staff, Cancer Center 2nd floor staff, and Breast Center staff. The mugs I gave to people on my regular care team: port nurse, medical oncologist, infusion nurse, physical therapist, NP, and breast surgeon. I prepared a mug for my social worker, but she wasn't there today; I'll try again next week. I think the gifts went over well. At least, everyone accepted them graciously, and they brought a few smiles. (I also gave the mugs with goodies to friends who drove me to chemo and who drove my kids to school while Ken and I went to chemo.)

My 8:15 appointment with the port nurse was her first appointment of the day. Regarding my port, she mentioned that I should talk through all my options with my oncologist, including the possibility of removing the port and using a regular IV for my ongoing maintenance Herceptin infusions. I had actually come across that idea already in one of the Facebook support groups, and appreciated having it validated by the port nurse. Still, even though the maintenance infusions would be every 3 weeks, I feel like keeping the port would be worth it, to save my veins, if they could really ensure a clean closure this time.  

With my port accessed, I had to wait an extra half-hour for my oncologist, who was already running late. I saw her at 9:30, and she spent so much time with me - which I appreciated so much!! - that she was even more behind schedule when I left. Any time I see a doctor, whether for myself or my kids, I never get upset if they are running late; I figure, maybe they are taking some extra time to answer questions from patients, which is exactly what I would want them to do for me.

I asked if, and when, I should stop taking the loratadine (which I've been taking to address a dry cough I got while on chemo), and she said to take it for 3 more weeks, then stop.

Regarding my port, my medical oncologist said it's really so much more convenient for me to have the port; she didn't really entertain the idea of taking it out. I asked her how I could be sure that the interventional radiologist could really get a good result this time? What if I get re-sutured, and it still doesn't heal properly? What will they do differently? I guess part of me wonders if it's really necessary to keep trying to fix the incision, since it'll just be re-opened and re-sutured again when I get my port out. She said I should ask the interventional radiologist those questions, and I got the impression she didn't think it was an option not to fix it. She called it a quality issue. She said she personally has 5 current patients with the same problem, there are people looking into what is causing the increased frequency of this issue, and it's just something they need to get right. 

She said the only thing that concerned her was the timing of my appointment, in case they do perform a procedure to re-open the wound and re-suture everything. Since today was my last chemo, she suggested I move the appointment to any time in January. That would give my body and blood counts time to recover from chemo, so that hopefully chemo won't be a factor in the healing, as it has been this whole time since port placement. (Back at home this afternoon, I re-scheduled the appointment for the first week in January.)

My oncologist spent the majority of the time going over her decision to prescribe exemestane, an aromatase inhibitor (AI), instead of Tamoxifen, which we discussed at the last appointment. Since I have consistently fallen in an "intermediate risk" range, she went back to my medical records and went over my pathology from the beginning, including reviewing my Oncotype DX report in more detail. She even showed me a report on some clinical trials (the TEXT and SOFT trials), and a decision-making flow chart that can be used to help to determine treatment options. Even though my lymph nodes were clear (a sign of "low risk"), age 43 is still "young" (a sign of "high risk"), and the fact that I had bilateral cancer with two different types is unusual enough that she considered it a sign of "high risk". For whatever reason, my body just happened to be conducive to breast cancer; she likes to say that I had "busy breasts". 

I left the appointment feeling comfortable with the decision to take an AI. She reiterated that if the side effects are unbearable, I can always try Tamoxifen. She said she'd write the prescription at our next appointment in January, which means I'll have a few weeks' break with no chemo and no new hormone therapy. 

Up in my infusion bay, I started my pre-meds around 10:15. My physical therapist came in around the same time to work on my cording.

I started Herceptin at 10:45, and Taxol at 11:15. With my physical therapy out of the way, I got some reading done during the infusion.

At 12:30, my infusion nurse de-accessed my port. I mentioned my thoughts about whether or not it's really necessary to continue trying to fix the port incision, and she didn't hesitate to say it was. She said the open wound is a risk for infection, and also, once the warmer spring and summer months come around, I probably won't like having it on display, since it won't be so easy covering up with layers in hot weather. She also suggested I mention to the interventional radiologist that the skin glue didn't work on my original closure, so maybe sutures would be better. I'll definitely ask what they plan to do differently to ensure a clean closure this time.

Interestingly, my nurse also mentioned that my right arm looked swollen! She has a good eye. I was completely surprised, because I hadn't noticed, and the physical therapist hadn't mentioned anything. But back home this evening, Ken agreed my right arm looked "thicker" than my left. Of course, now that I'm aware, I'm noticing some slight tingling in my right hand. So, now I'm worried about lymphedema. I'll continue to do my stretches, and will mention the swelling to my physical therapist next week. (For the record, I have not been keeping up with my walking/biking exercises, and I wonder if that may be a factor in the swelling... I will try harder to get my exercising in!)

My blood work had several values slightly out of range, but nothing that hasn't already been seen at some point during my chemo. 

Incidentally, today my lunch arrived just as I was leaving at 12:45. At my nurse's suggestion, I ate my lunch in the "respite room", a little room with a table and chairs, like a small conference room. By the time I left, I had spent about 5 hours at the Cancer Center.

8/23/19: Double Mastectomy (DMX) Surgery

Here's a recap of my surgery experience. All the gory details!

First off, I feel fine! The pain is much less than I anticipated, so I am grateful for that. I assume there are lots of factors that are making my recovery easier than what I had expected as the worst case scenario. I did not have reconstruction (immediate reconstruction entails additional surgery); I did not have chemotherapy prior to surgery; I don't smoke (smoking ages skin prematurely, which can make for more difficult recovery); and I'm well below the median age of breast cancer patients (62), so maybe I have fewer health issues in general.

The night before surgery, my nerves got the better of me. I was up around 2:30 AM, and couldn't fall back asleep. I took my shower with Hibiclens, took 2 Tylenol before leaving the house as instructed, and we arrived at the hospital at 6:30 AM as scheduled.

I have to say, I really feel I got high quality care at the hospital. Everyone was competent and compassionate.

Ken came in with me to the pre-op area. I gave a urine sample. A pre-op nurse took my vitals and asked me lots of questions. Two anesthesiologists came by, and one put an IV into the back of my left hand for the general anesthesia. The IV in my hand felt kind of weird, it took getting used to.

Throughout the process, I was asked multiple times to confirm my name and the procedure I would be undergoing, in my own words. It turns out, it was not enough to say, "double/bilateral mastectomy"; it was important that I also state "bilateral sentinel lymph node biopsy".

I changed into a hospital gown, and they took me in a wheelchair down to the Breast Center for my nuclear medicine appointment. Ken stayed behind because much of the Breast Center is a women-only area. I met with a nuclear medicine person and a radiologist. I'm pretty sure the radiologist was the one who performed my first ultrasound, but she showed no signs of recognizing me. The two of them together decided where to inject me with the blue radioactive dye that would show the path from my breasts to the sentinel lymph nodes, which would be removed for biopsy. I got 6 injections in each breast. That's 12 injections total! Ouch. 4 injections on each side went into the breast tissue. The remaining 2 on each side were subcutaneous, and hurt a bit more.

I was brought back to the pre-op area. We met with the breast surgeon, and I really have to say, he just filled me with confidence with his calm, professional, and reassuring demeanor. I confirmed with him one last time that I was sure I did not want reconstruction, I wanted to be flat, with no excess skin; I wanted non-skin-sparing surgery.

The anesthesiologists came back around and gave me two injections in my back for a nerve block (regional anesthesia) that would numb my whole chest area.

Then it was time.

I said goodbye to Ken, and teared up. One of the nurses pushing my hospital bed talked to me with calm, compassionate, and reassuring words. I stared up at the hospital ceiling, holding back the tears, while they pushed me around corners and down halls to the operating room. I was moved onto the operating table, and they must have administered the general anesthesia via the IV around that time. I remember counting 5 people busily working around me, and that's it.

The next thing I knew, I was waking up, and it was done.

I went into surgery at 9:45 AM as scheduled. I'm told I came out at 1:10 PM, so that's just about 3 1/2 hours in surgery. I woke up around 1:30 PM. They called Ken to come to the post-op area.

The nurse told me the breast surgeon was "really happy" with the results. The breast surgeon came by and said everything had gone smoothly. I think I was still pretty out of it.

The post-op nurse talked to me about pain management, and she used the words "tolerable pain". I appreciated her perspective, because I was apprehensive about taking addictive narcotics. She said we could start with the lowest possible doses and ramp up only if necessary. She did recommend that I take oxycodone when the block anesthesia was expected to wear off, which would happen in about 8-10 hours after it was administered.

I really had to pee, so two nurses helped me up and walked me to the restroom. My post-op nurse warned me that because of the blue dye, my pee would be green! And so it was. I made a mental note to tell my son, who I knew would get a kick out of that.

I was moved to my room around 2:45 PM. They put leg compression wraps on both my calves to help prevent blood clots. The wraps automatically compressed each leg alternatingly. It felt great, like I was getting a constant leg massage. (I would periodically take them off when my legs felt too warm.)

Any time a nurse took my vitals, the blood pressure cuff was placed around my leg calf instead of my arm. I think this was to prevent lymphedema (swelling in the arms) after lymph node removal. I will need to ask the surgeon during my follow-up visit if I will always need to have blood pressure measured from my leg, or can it be measured in my arm after I'm fully healed?

At 6:00 PM I took 5 mg of oxycodone. The nurses regularly gave me 1000 mg of Tylenol on schedule, every 8 hours. I also got antibiotics via the IV, a shot in the belly of blood thinner (also to help prevent blood clots), and Colace and Senna to help with bowel movement.

Ken went home in the late afternoon to pick up the kids and bring them to the hospital. They visited for about an hour, and then Ken brought them back home. He had dinner with them, and then the kids stayed home with Ken's mom while Ken came back to spend the night with me in the hospital, in a reclining chair in my room.

It was a long, emotional day. I am glad to have the procedure behind me, and am happy to focus on recovery. I am not quite as relieved as I thought I would be, because I am still anxious about the pathology results.

I will get a call on Monday to schedule a follow-up appointment with the breast surgeon.