9/30/19: My Port is Uncomfortable

The areas surrounding both port incisions have been so itchy! Figures it started itching after I spoke with the port nurse on Friday. It's calming down, I think, especially the top incision, the more it scabs over. But it's SO hard to not scratch. If I do, the area gets a red, bumpy, rashy look.

Sometimes the uncovered port stings and hurts when my shirt rubs against it. At home, I wear just a camisole that doesn't cover the port. It's not a pretty sight, so I talked to Ken and the kids about it first.

If I have to put on a shirt, sometimes I'll cover the area lightly with a piece of gauze and a bit of medical tape, just to keep the shirt from rubbing against it.

I don't need the wedge pillow anymore when sleeping, but I'm still sleeping flat on my back all the time. It's getting easier to lean towards my right side, but still feels a little funny. The left side is even less comfortable because of the port.

9/27/19: I Took the Dressing Off My Port

After port placement, both incisions were covered with gauze and Tegaderm.

At the nurse visit for my port yesterday, the nurse removed the dressing for the top incision, and said it's okay to leave it uncovered. It's starting to scab over, but it still stings and looks red, so I've been putting a bit of Neosporin on it.

The nurse put new dressing over the port, and said I could take it off today, which I did. The port incision is closed with surgical glue.

The whole area still hurts. Not as bad as the first night, and I took just one dose of Tylenol (1000 mg total) today.

I was going to post a photo, but the port incision is still looking pretty raw.

What's weird is - besides the idea of having a device installed inside me, which is pretty weird - I can see/feel the catheter part of my port between the two incisions. It's like a little ridge going right over the collar bone. That kind of freaks me out. It'll take some getting used to.

9/27/19: The Port Nurse Called Me

The port nurse who saw me yesterday called to follow up! I feel so comforted by her thoughtfulness. 

I told her the redness has not spread, and she was even more confident that it's just a bruise. She reminded me that I could take the dressing off today and shower, and in fact it's recommended because washing the area will help to keep it clean. 

I mentioned that the area still hurts, and she wasn't surprised, which is reassuring to know it's normal. She said I could ice it for 5-10 minutes, sometimes that will help.

9/26/19: Echocardiogram

This appointment took about 30 minutes.

I changed into a gown and lay on my back. The technician - who was very friendly and professional - put a few electrodes on my torso. 

An echocardiogram takes images of your heart via ultrasound. The technician used a transducer and warm gel, and took pictures from 4 angles: straight above through the chest, on my left side through my rib cage, from my stomach looking up, and from my throat looking down. 

Every now and then I looked over at the monitor. I wouldn't have been able to tell that what I was looking at was a heart, but I could see what I assume was a valve flapping open and closed! Crazy.

The technician said the images would be read today, and a report would be sent to my doctor. I wish I had thought to ask if I would get a copy, too. I'll be sure to check both online patient portals, and I'll add it to my list of questions for my next medical oncology appointment.

9/26/19: I Got My Port Checked - It's Fine

I woke up early this morning. My port still hurt a lot. I noticed redness around the port location, and it felt hot to the touch. The discharge papers I received yesterday said to call if "pain or redness are getting worse instead of better" and if "the area around your port feels warm or hot to the touch."

I was hesitant to call because you don't want to be "that patient" who overreacts and wants to be seen for every minor symptom. But I figured better safe than sorry.

I got an answering service, and the doctor on call called me back. She said if I have a fever or chills, or if the red area is spreading rapidly, I should go to the ER. None of those being true, she said I should call the Cancer Center when it opened at 8:00 and try to get an appointment to be seen.

I actually had my echocardiogram scheduled for 9:00, and to make it in time during rush hour, I'd have to be on the road by 8:00. The doctor said I could just show up, that's fine.

I took another dose of Tylenol and headed over to the Cancer Center. The seat belt would have been painful on my port, but I used my soft squishy dragon pillow on my belly, keeping the seat belt off the port area entirely. I arrived just after 8:00 and spoke with the front desk in person.

The nurse who works most often with ports couldn't see me before 9:00, but she said I should come back after my echocardiogram appointment, and she'd fit me in.

She saw me almost right away after I returned from the echo. She was super nice, saying she always prefers that a patient call if they have any concerns, and it's not a problem that I didn't have an appointment.

She took off the dressing and saw that the redness doesn't actually start at the incision; it's the area below the port. She thinks the redness is a bruise, with blood draining downward. She said the port placement surgery is actually pretty rough; the doctor basically needs to push things around to make room for the port under my skin! And I got a little extra pushing and pulling, so a bruise makes sense.

She used a skin marker to outline the edge of the redness, so we can easily see if it gets any bigger. She thinks over the next few days, it'll turn colors to look more like a bruise.

9/25/19: Port Placement

Okay, this port placement surgery was unexpectedly significant!

In my mind, it was just a step on the way to chemo. I didn't really think of it as a surgery in itself.

Mostly it's just a lot more painful than I imagined. The oncology nurse did say that I might want to use any leftover oxycodone, so maybe the pain should not have been a surprise. I think I figured, since I got lucky with a relatively pain-free DMX, maybe I'd get lucky with this port placement too. Boy, was I wrong!!

It's a stinging pain. I took 2 doses of Tylenol (1000 mg), and it helped. I even pulled out my wedge pillow again because it hurt so much to lie flat. It also hurt trying to get up from a lying down position.

Anyway, here's how the procedure went.

Checked into radiology. When I got called, the nurse said that Ken would be more comfortable in the waiting room, so he stayed behind. In retrospect, there was a chair in the prep area, and it would have been nice if Ken could have come in with me.

I was taken to a kind of multi-purpose prep area. The nurse took my vitals and gave me an IV, I think for antibiotics, which she said was just standard procedure.

When I got my sentinel lymph node biopsy, I picked up on inconsistent chatter in Facebook support groups about how you shouldn't get blood drawn, injections, or blood pressure taken using the arm that had lymph nodes removed. Some people said that if you had lymph nodes taken from both sides, you're supposed to use alternate locations, like a leg for blood pressure. Mostly these precautions are meant to prevent lymphedema. I specifically asked both my NP and breast surgeon about these concerns (though it looks like I forgot to mention it in my blog posts...), and they both said that those recommendations are outdated. This informational page from Memorial Sloan Kettering Cancer Center agrees. The only caveat is if you did have lymph nodes taken from both sides, you should "talk with your doctor" about which arm is best for blood draws and injections.

All this to say, since my surgery, I've been careful to get blood drawn and blood pressure taken from my left arm, which had only 1 lymph node removed (compared to my right, which had 5). But for the port placement, I used my right arm again for the first time. I asked for the IV to be put in my left arm, but that meant that during the surgery itself, they used my right arm to monitor my blood pressure. I was a little nervous about it, but it was fine.

Going in, I wanted to ask for the port to be placed on my left side. I figured, since my right side is still bruised and numb, maybe I should give it a break, and spread out the discomfort, especially since I'm right-handed. When talking with the doctor who would perform the surgery, he said ports are usually placed on the right, but maybe 1 in 10 cases he puts it on the left. I wanted to make sure that medically speaking, there weren't any additional risks if I had my port on the left, since it was only comfort that was driving my preference. I wavered, but he reassured me and just said, "Let's put it on the left."

I walked into the operating room and hopped up on the table. Five people busied themselves around me, including the doctor and 2 nurses. I think the other 2 people were imaging technicians.

I lay face up with an IV in my left arm, blood pressure and oxygen being monitored on right arm, and 3 electrodes attached to my torso to monitor my heart. I got oxygen through my nose, and they covered me with surgical drape sheets from the neck down.

The doctor cleaned the area. I felt the painful pinch of the injection of local anesthesia. I had read that some patients get general anesthesia for this procedure, but I was wide awake the whole time. I could feel some pressure and pulling sensations.

I don't know for sure, but I think the surgery lasted maybe half an hour, maybe a bit longer. At one point, the nurse saw something on the heart monitor. She said the catheter part of the port was "tickling" my heart; it was too close, and the doctor would have to reposition it. The doctor asked the technicians for a picture of my heart, then a "live view". He pushed and pulled on the port for a bit, then asked for another picture and live view. He pushed and pulled again, asked again for a picture and live view, and was satisfied.

When the surgery was finished, the nurse went to get Ken so he could sit wtih me until I was cleared to go home.

To place the port, there are actually two incisions, one below the collar bone for the port itself, and one above the collar bone at the base of the neck. Immediately after the procedure, the area was still numb, so I hardly felt any discomfort at all. But a couple hours later, presumably when the local anesthesia wore off, the top incision really hurt!! Even with Tylenol, if I so much as sniffed my nose, it hurt.

By the time I went to bed, both incision sites hurt, especially if anything touched the area.

There is dressing on both the port and the incision above it. I can remove them in 2 days.

9/25/19: Insurance Letter Confirming Approval for Echocardiogram

Apparently, tomorrow's echocardiogram requires pre-authorization. I received a letter stating that my request had been approved.

Amusingly, this is the first insurance approval notification that arrived prior to the actual procedure/test.

9/24/19: I Picked Up Chemo-Related Prescriptions

Lorazepam (use for sedation or anti-nausea):
Retail price is $17.29, our prescription co-pay was $1.30.

Prochlorperazine (use for anti-nausea):
Retail price is $22.99, our prescription co-pay was $6.60.

Lidocaine-prilocaine cream (use to numb port area):
Retail price is $49.99, our prescription co-pay was $10.00.

Total cost to date: $21,849.27
With insurance, cost to me: $1,909.33

9/24/19: I Got Blood Drawn

On Monday in the late afternoon, I got a message on my cell phone that I need to get blood drawn before Wednesday's port placement.

I'm not a cell phone person, so even though I know the hospital might call my cell, I still haven't made a habit of keeping it close by with the sound on at all times.

By the time I got the message, I didn't have the time or energy to go out again, so I put it on my calendar for Tuesday.

I don't even know what kind of blood work they needed, just that it was related to the port placement.

But the extra trip did produce actionable intel for me! In chatting with the person who drew my blood, I learned that the whole hospital complex that I go to is actually two institutions; one is a satellite location of the main hospital in the city, the other is its own local hospital that is affiliated with the main hospital.

This information is eye-opening because I noticed I had two Medical Record Numbers, and I couldn't figure out why. Also, when I logged into the online patient portal (for the main hospital), I noticed it didn't show all my appointments. Now I know that if I log into the other patient portal (for the local hospital), the "missing" appointments are there!

The two hospitals seem to work seamlessly with each other. I'm glad I can make more sense of my online accounts and paperwork, though I wouldn't complain if they streamlined it into one system.

9/23/19: (~1 Month Post-DMX) Physical Therapy Appointment #2

The exercises are helping a lot! My range of motion has improved already.

The physical therapist actually spent most of the time working on the cording in my right underarm. This area is still numb. She says the cording is pretty small; for some women, the cord can extend all the way down the arm to the wrist. She's optimistic that it will go away eventually, because she feels improvement as she massages them.

She spent a little time massaging my incision areas. I think it promotes healing and reduces scar tissue. These areas are also still numb.

She also talked a lot about how I should try to stay active during chemo. She gave me the same direction that my friend who is a dietitian gave me early on: walking at a moderate pace is one of the best things I can do. She further quantified it and said I should aim for a minimum of 150 minutes per week, which works out to 30 minutes at least 5 days a week. And it's important to get my heart rate up. The pamphlet she gave me described "moderate activity" as "breathing heavily but can hold short conversation".

Made an appointment for next week, and we'll just take it one appointment at a time to see what my needs are.

9/23/19: Oncology Nurse Informational Appointment

Sooooo much information. 

I have to credit the nurse for being so knowledgeable and reassuring and helpful in delivering all the details. This post is going to be TMI for most people, but since this blog is how I'm processing and documenting my treatment for myself as well as for others, I'm going to lay it all out. 

First, I need to clarify my course of treatment. I am getting chemotherapy (Taxol), targeted therapy (Herceptin), and hormone therapy (Lupron and Tamoxifen). All of it is preventative because I am NED (No Evidence of Disease). The nurse was very clear to say that breast cancer treatment is personalized to the specific patient's needs, so my treatment plan should not be compared with another patient's course of treatment.

Ken came with me to this appointment. We were taken to look at the infusion room. Each patient has a private, curtained-off area. There's a comfy recliner for me, an extra chair for company, and a TV. 

I will start Taxol and Herceptin on 10/4. I will have weekly infusions for 12 weeks. Each visit I will get blood work, pre-medications (to prevent possible allergic reaction), Taxol, then Herceptin. The first treatment is expected to take 4 1/2 hours. They will deliver the Herceptin very slowly at first to monitor for complications, and if all goes well, they may be able to administer it more quickly in subsequent weeks. So towards the end, treatment might be "only" 3 hours.

Chemotherapy

The reason my chemotherapy is considered "light" is because I am only getting Taxol (chemo usually involves multiple drugs), and I'm getting a very small dose of it. 

At the start of each treatment, my port will be "accessed", which means they'll insert a needle into it. Since the port will be under my skin, this procedure sometimes hurts. I will get a prescription for lidocaine-prilocaine, a numbing cream, which I can apply at home before leaving the house. This medication is optional, it's only for comfort.

I will get blood taken using my port. The blood work will check for three things:

• White blood cell count - White blood cells help the immune system fight infections. If the count gets too low, I might be especially suspectible to infections.  
• Red blood cell count - Red blood cells deliver oxygen to body tissues. If the count gets too low, I might be anemic. In a severe case, I might need a blood transfusion. (They would use blood from the Red Cross.)
• Platelet count - Platelets help your body form clots to stop bleeding. If the platelet count gets too low, I could be at risk for serious bleeding.

If any of these counts gets too low, they might decide to hold off on treatment and not do chemo that day, or they might decide to lower the chemo dose. They won't automatically give me my blood work report, but the nurse said I can ask for it if I want it. 

They will also use my blood to monitor my liver, which processes the Taxol. Since it's best to have my liver at full functioning capacity, there are guidelines to not drink alcohol the day before or the day of treatment. I might just refrain altogether, just in case.

After getting blood work, I'll be given pre-medications to ward off an allergic reaction to Taxol. The pre-meds all work as antihistamines.

• Benadryl - Side effects include sleepiness and dry mouth.
• Steroid - Side effects include flushing and "feeling wired", which means I might have trouble sleeping that night. 
• Pepcid

Because of the "feeling wired" side effect, I will be given a prescription for lorazepam (name brand Ativan). It's usually given for anxiety, and causes sedation, so I could take it if I need help falling asleep. (If you're keeping track, that means I have a prescription to address a possible side effect of a pre-medication of the actual chemotherapy...) It is addictive, but my dose is very low, and the nurse said I could safely take it a couple times a week. This medication is meant to be taken as needed, and since I am fortunate to not have to work during chemo (i.e., I don't have to keep a strict sleep schedule), my inclination is to avoid taking it if possible.

In discussing side effects, the nurse was careful to point out that I may get side effects, but I may not! Every patient is different, so I shouldn't go in expecting side effects; it's just good to be informed.

The Taxol infusion should take about an hour. Possible side effects include:

• Nausea - Low risk. Lorazepam can also be used to treat chemo-induced nausea and vomiting, so I may find I need to take it for this reason. However, I can still first try more simple remedies, like saltines and ginger ale, at the first sign of queasiness. Also, I will be getting a prescription for prochlorperazine maleate, an anti-nausea medication that I can take as needed.
• Hair thinning - Because I'll be getting a small dose of Taxol, the nurse said I should expect visible hair thinning, but not complete hair loss! Yay! I don't even warrant a presription for a wig, which some patients do get. She said hair generally grows back in the same length of time as the treatment; so in my case, after 3 months of treatment, it might take 3 months for my hair to grow back completely. 
• Peripheral neuropathy - This is a fancy way of saying tingling and numbness in my fingers and toes. It is cumulative, so I may get tingling in 1 or 2 fingers the first week, and then in 4 fingers and a toe the next week, etc. These sensations should wear off by the next treatment. If not, they may decide to hold off on treatment and not do chemo that day.
• Heightened sense of smell - Could act as a trigger for nausea. May want to eat food at room temperature to decrease odors. May affect appetite, so may want to eat smaller portions more frequently.
• Modified sense of taste - Food might taste metallic. Can try to counteract with additional seasonings. 
• Mouth sores - I should keep good dental hygiene, and not use alcohol-based mouth wash, which can dry out the mouth. If I do get sores, I should use a baking soda rinse consisting of 8 oz. of water and 1 tsp baking soda; have it on hand to rinse and spit frequently.
• Fatigue - May results from the chemo itself, or from the lack of sleep due to chemo, or from being emotionally exhausted from dealing with cancer. 

I should keep track of symptoms and report them every week. 

The nurse also gave me general suggestions and guidelines for things to do while getting chemo.

• Stay hydrated - Drinking plenty of water serves lots of purposes, from preventing mouth sores to maintaining a healthy liver.
• Maintain normal activities - Despite fatigue, I should try to remain as active as possible.
• Walk - I should get physical activity recommendations from my physical therapist. 
• Get a flu shot - I'll get it from the Cancer Center.
• No dental cleanings - Lots of bacteria involved in the mouth, so best not to take the risk with potentially compromised immune system or higher likelihood of bleeding. 
• Be vigilant about infections - Wash my hands thoroughly or use hand sanitizer; avoid touching my face and eyes with my hands; avoid social interaction with people who are or have been sick; if around someone who may be sick, wear a surgical mask (can be purchased at CVS); check my incisions and port site and be on the lookout for redness or tenderness; call the doctor (even page the doctor on call if it's off-hours) for any fever over 100.5 F.

Targeted Therapy

While chemotherapy indiscriminately works on all cells (hence all the side effects), Herceptin targets the HER2 receptors on cancer cells and blocks them.

There are relatively few side effects, but the big one is that it might weaken the heart. Symptoms would include swollen legs and shortness of breath.

Herceptin is the reason I'm getting a baseline echocardiogram. I will get an echocardiogram every 3 months while on Herceptin to check my heart function. If my heart weakens, they might stop the Herceptin.

Hormone Therapy

I will get my first Lupron injection on the same day I start chemo and targeted therapy.

Lupron can be given every month or every 3 months, but the nurse wasn't sure which dose I would be getting. I will need to follow up with my medical oncologist.

Lupron suppresses ovarian function, so I will be in chemically-induced menopause. Natural menopause occurs gradually, but it will happen instantly for me. I will definitely experience hot flashes, and maybe also insomnia, mood swings, trouble losing weight, and vaginal dryness. The only potentially good thing is not having any more periods. (If I have any bleeding, I should call my OB/GYN.)

Tamoxifen is a daily pill that I won't start until after chemo ends, so we really didn't talk about it at all, since it's not an immediate concern.

I am not clear on how long I will be on Lupron and Tamoxifen, so that's something I need to ask my medical oncologist. I think it might be until natural menopause, which usually occurs around age 50. The nurse said it's so far in the future that I shouldn't worry about it now, but at some point they will do a blood test for hormones to see if I'm in natural menopause.

The nurse did offer me some Hibiclens for my port placement surgery, but I actually have half a bottle left over from before, so I didn't take it.

Finally, the nurse gave me the name of a social worker, who I can contact if I want to join a support group, or need help talking to the kids. She said the most common time to feel most affected is actually at the end of treatment, because then you finally lift your head up, and you're not sure what to do anymore. At this point, I can hardly imagine that position, because I am so in the thick of it now, but it's a concept I have seen before:

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

9/23/19: Stitch Fix Sent Me a Card

Wow!! Stitch Fix has some amazing customer service! I super appreciate this.

(Book Review) Dr. Susan Love's Breast Book: Fully Updated and Revised 6th Edition by Susan M. Love

I received this book as a gift, and I only wish I had started reading it sooner. I think I'd give it 4 1/2 stars because of a couple observations noted at the end of my review, but Goodreads doesn't allow 1/2 stars, so I rounded up to 5 stars.

The first thing that struck me was the very first line of the Acknowledgments, in which Dr. Susan Love says that she revises this book every 5 years. From my own limited research, it's clear that the treatment of breast cancer has had major developments over the last few decades, and it's good to know this book stays abreast (haha) of new advancements.

The second thing that struck me was the very first line of the Introduction, in which Dr. Love notes that this sixth edition, published in 2015, will probably be the last revision. I hope this is not really the case, because this book is such a thorough, accessible, go-to reference for breast cancer. It would be a shame if future women don't have an up-to-date resource like this one! I hope that maybe someone else from the Dr. Susan Love Research Foundation will take over the book and ensure it's continued relevancy. (Maybe they figure everything should just be online these days...)

Dr. Love's writing style is colloquial, her descriptions and explanations are clear and easy to understand. A quote on the front cover touts this book as "the bible for women with breast cancer," and it really is. I think any woman who has been diagnosed with breast cancer should get their hands on this book as soon as possible and keep it close by for reference.

This isn't a book that needs to be read cover to cover; chapter titles are self-explanatory, and there is a complete index, so you can look up terms and topics and questions as they come up. (In fact, there are sections towards the end titled "How Long Do I Have?" and "End-of-Life Planning: Making Your Wishes Known" that I really hope I don't ever have to read.)

That said, this book isn't just for women who have already been diagnosed with breast cancer. Any woman who has started getting mammograms, or who has found a lump and is facing a possible diagnosis, should have this book, too. There are entire chapters on screening and diagnosis that I imagine would be very helpful if they are read even before being diagnosed, or while going through it.

In my personal experience, I wish I had this book for reference as soon as I felt a lump. My cousin gave me the book in the time between diagnosis and double mastectomy, but I admit I didn't read it right away, and that's on me. I should have read the sections on mastectomy and sentinel lymph node biopsy before my surgery. All the information is so straightforward and thorough; the book included everything that I had otherwise gathered from multiple web sites and online support groups, plus some. Moreover, my online research involved having to filter out random pieces of information that didn't apply to me, and it took a lot longer than if I had just read a few pages of this book instead.

I finally picked this book up about 3 weeks after my surgery, just before meeting with my medical oncologist. Once I saw how accessible the information was, I jumped ahead, searched the index, and read the pages about types of cancers and different kinds of treatment. Reading just these select pages helped me feel more prepared for my appointment. And as soon as my oncologist confirmed my treatment plan, including chemotherapy and hormone therapy, I went straight to relevant sections of the book.

I did notice that the book does not use some common terms, even when it does address the particular issue. For example, it mentions that after a mastectomy, "surrounding tissue under the arm may seem baggy and excessive and hang over your bra," (p. 475) but it doesn't use the term "dog ears", which is how the condition is referred to in online forums. It also describes "axillary web syndrome" (p. 348) as a side effect of lymph node surgery, but does not use the word "cording", and neither term is included in the index. As someone who happened to develop cording after surgery, an index reference to this topic would have been nice.

Additionally, not every drug is specifically mentioned. For example, in the section on gonadotropin-releasing hormone agonists, Zoladex (name brand for goserelin) is discussed, but not Lupron (name brand for leuprolide). Taxol (name brand for paclitaxel) is also not in the index. I understand that not every single drug can be covered, but as someone being prescribed these medicines, the omissions were noteworthy for me.

I do wonder if the book being published in 2015 has anything to do with the above two observations. Like maybe the terms "dog ears" and "cording" have only recently become more widely used? Or maybe Lupron and Taxol are less common these days? I don't know.

Because this book is more like a reference book, I have not read it in its entirety. I certainly plan to use it as needed moving forward.

Being Flat (No Reconstruction): Prosthetics and Clothing

I didn't expect to make this post until a bit later. But now that chemo is lurking on the horizon, I expect DMX-related concerns will take a back seat, so I figured I might as well post these thoughts now.

It's taking a while to get used to having a new body, a new image of myself. But each time I see a friend, or go out in public, I gain a little bit of confidence.

Prosthetics

I'm about 4 weeks post-DMX. My chest is still tender, bruised, and numb, and the numbness still extends into my right underarm. It feels weird and uncomfortable placing anything up against my chest, so I haven't worn any prosthetics yet. I'm getting more comfortable in my flatness, but I'm still open to the idea of prosthetics. Anyway, it makes me feel psychologically better knowing I have the option.

Before my surgery, I had read that you shouldn't bother shopping for prosthetics until after recovery, because the shape of your chest may affect the fit and feel of the prosthetics. Since I ended up a bit concave on one side, that advice seems appropriate. Still, even before surgery, I wanted something, even if it wasn't perfect, just in case. Again, it just made me feel less anxious, having them available.

Below are a couple options I found. I have not yet asked my NP for a prescription for contoured, custom-made prosthetics. I know that's an option, but I figure there's no need to spend the time and money (even if it's insurance money) unless I think I will really use them.

• Knitted Knockers - An organization that provides light-weight, knitted prosthetics free of charge to anyone who requests them. I requested a set via their web site a few weeks before surgery. They arrived a week before my surgery date, and I felt better just knowing I had an immediate prosthetic option in case I needed it. (If you or a friend are a knitter, the web site also has knitting patterns available. You'll need to know the patient's bra size.)
• Athleta Empower Mastectomy Bra Inserts - Also available online, these are only $10 for two forms for one side (left or right), so $20 for 2 sets. 

Of course, in order to wear these prosthetics, I needed bras that accommodate inserts. Athleta has a whole line of post-mastectomy bras priced in the $40-60 range. I also realized that a couple of my old bras just happened to have pockets for inserts, so maybe I can still use those, too.

Like I said, I expected to make this post later, and I haven't actually worn any of the forms for any length of time yet, so I really can't comment on their look or feel.

Clothing

Since I'm not wearing prosthetics yet, I definitely need new clothes to wear as a "flattie". Clothes that will fit and flatter my new shape with no bust while not accentuating my "Buddha belly"! Maybe one day I will be comfortable showing off my flatness, but at this point, I'm looking for clothes that will hide it. I have a few items in my closet that I think can still work - especially if I throw a scarf over it - but I really want more options. Generally speaking, I'm looking into ruffles, cowl necks, cardigans, layers, and scarves.

I'm not a fan of shopping, so I renewed my Stitch Fix subscription. About a week before surgery, I re-activated my account to request a fix about 2 weeks after surgery (hoping my drains would be out by then), and I signed up for the most frequent delivery option. (I should have waited more like 3 weeks after surgery for that first fix, because I had a hard time getting shirts on and off over my head!) I entered a note in my "Style Profile" explaining my double mastectomy without reconstruction and how I'm looking for tops that will hide my flatness.

11/22/19 Update: As it turned out, Stitch Fix didn't work out for me. I still appreciate having gone through the process, because it gave me a much better idea of what kinds of clothes work and don't work for me, and what I'm looking for. Another option I ended up trying was Amazon Prime Wardrobe, with which I had a much better success rate. The difference is that Amazon Prime Wardrobe allows you to choose your own items.

The other thing I had to shop for is camisoles. One of the pros of going flat is not needing to wear a bra anymore! But since I still have some swelling in the underarm area, my incisions are still healing, plus the fact that I'm a bit concave on one side, I just feel better wearing something like an undershirt, at least for now. Wearing a camisole prevents clothes from rubbing against my incisions, and it gives the illusion that my chest is nice and smooth.

I bought a variety of camisoles and tank tops from Jockey, a brand I've had good luck with. I got them about 3 weeks post-DMX so I could wear them once I stopped wearing my surgical bra and compression band. I like them all, and they are stretchy enough that I could get them on even without full range of motion in my arms.

• Jockey Supersoft Camisole - Material is thin and lightweight, I can barely feel I'm wearing it; seems the most like an undershirt.
• Jockey Modern Tactel Cami - Slippery smooth; I ordered up a size so it's more loose-fitting and can be worn as a visible layer under another shirt or a cardigan. 
• Jockey Rib Tank - Material is heavier, would make a nice under layer in the winter, or could be worn alone in the summer, if I ever get to the point of being comfortable showing my flatness.
• Jockey Eco-Comfort Tank - Lightweight; runs small and is snug even though I ordered up a size; makes for a good undershirt.

9/19/19 - 9/20/19: Insurance Letters Denying and then Approving Oncotype Testing

I didn't even realize that Oncotype DX testing required pre-authorization from my insurance company. I learned from the MRI and genetic testing that all the pre-authorization business is between the doctor's office and the insurance company; there's nothing for me to do.

I know my cancer was tested because we discussed the results with my medical oncologist. On the same day as that appointment, I got a letter saying the Oncotype testing was denied by my insurance. I didn't worry about it too much, because the testing already happened, though I wondered if I'd get hit with a giant bill later.

Today I got a letter approving the testing.

Can't say I understand how the insurance industry works.

9/19/20 - 9/20/19: Phone Calls

The last few weeks since surgery have been relatively slow-paced and calm. I had a few medical appointments here and there, but mostly I just laid low and rested and focused on physical recovery and mental well-being. The medical oncologist appointment was like the marker for when I would have to start thinking about "further treatement."

Now that there's a plan, things are happening quickly. 

Yesterday I got separate phone calls to schedule next week's port placement and echocardiogram. The port placement is done in the radiology department, and the echocardiogram is in cardiology. I also called the physical therapy department to re-schedule an appointment to make room for the informational meeting with the oncology nurse.

I got a call today that turned out to be the pre-operative call for my port placement. It's an outpatient surgery, so I have the same instructions to not eat or drink anything after midnight the night before, and to shower the night before and morning of with Hibiclens. This time I was told I would get a bottle of Hibiclens at my nurse appointment on Monday.

Yesterday, in calls to help coordinate my appointments, the oncology nurse saw that I had a physical therapy appointment scheduled for the day after my port placement. She thought that would be too soon, that I would be too sore, so she said she would talk to the physical therapist about that concern. I spoke with my physical therapist today, and we cancelled that appointment, and will just see how things go at my next appointment and go from there.

The oncology nurse also called today to schedule another appointment with my medical oncologist, plus my first two chemo infusions. I start the first week of October. So soon!

9/19/19: (~1 Month Post-DMX) Medical Oncologist Appointment - I Need Chemotherapy

I really like my medical oncologist. She was just the right balance of knowledge and caring. A nurse sat in on the entire meeting, and she will be the person helping me navigate upcoming appointments and procedures.

So much information to process.

I will be getting chemotherapy.

I cried a bit at this news, but actually I am on board with the recommendation; I feel my oncologist really gave my case a lot of thought, and is giving me the best treatment for my unique situation. Going into this appointment, because I was in a grey area, I was most worried that the doctor would not be able to confidently recommend a clear course of treatment. She said my case is indeed unique. Two tumors in my right breast, one tiny tumor in my left, two different types of cancer.

The two tumors on the right were ER-positive, PR-positive, and HER2-negative. The larger of these two was sent for Oncotype DX testing, which predicts the likelihood of recurrence and whether or not the patient would benefit from chemotherapy. The result came back "intermediate to low risk", which is basically another grey area with no clear recommendation in terms of chemotherapy. The actual number was 18. The above link gives this not super helpful explanation of results: "If you have a score of 16 or above and are aged 50 or under, your specialist will discuss your test result with you to help decide if you’re likely to benefit from chemotherapy."

The tumor on the left was ER-positive, PR-positive, and HER2-positive. Usually, a HER2-positive cancer is treated with Herceptin in conjunction with chemotherapy. But since this tumor was so small (4 mm), it wasn't clear if Herceptin and chemo are still necessary.

My oncologist brought my case to 3 additional oncologists at the main hospital in the city. All 3 oncologists said that yes, I should be treated with Herceptin. Moreover, they all agreed on administering it via chemotherapy with Taxol, which interferes with the growth of cancer cells. My oncologist said their agreement is noteworthy; in a non-straightforward case like mine, it's more common to get differing opinions. I do find it very reassuring to know that even though I started in a "grey area", my course of treatment was actually recommended by 4 oncologists, including my own.

Ultimately, my age played a large factor in the decision. Because I am considered young, the likelihood of recurrence is high. Since I am healthy and have no other health issues, I should be able to handle the chemotherapy.

My medical oncologist said my regimen will be like "chemo lite". My treatment will last a year total. For 12 weeks, I will get Taxol and Herceptin once a week. Then I'll get a maintenance dose of Herceptin every 3 weeks for the rest of the year.

Before starting chemo, I need to get a baseline echocardiogram. I also need to get a port placed in my upper chest, which is how the chemo will be administered. Both these appointments will happen next week.

I will also be getting hormone therapy.

All 3 tumors were ER-positive and PR-positive, which means the cancer's growth is fueled by estrogen and progesterone. I'll be getting both Tamoxifen and Lupron. Tamoxifen is a pill that blocks the estrogen receptors in the cancer cells. Lupron is a type of ovarian suppression. It's an injection that stops estrogen production in the ovaries. I'm not entirely clear on this, but it sounds like I may need to take Tamoxifen and Lupron until menopause.

I do not need radiation.

Mainly, I think, because I had clear surgical margins and my lymph nodes were clear.

All my treatment moving forward is to prevent recurrence. Chemotherapy and hormone therapy are both systemic treatments, and as this video explains, they are needed to address any cancer cells that already escaped from the breast and may grow into cancer later.

Finally, we discussed my variants of unknown significance in my BRCA2 and PALB2 genes. BRCA2 is also linked to ovarian cancer, and PALB2 may be linked. Ovarian cancer is very difficult to detect, and tends to already be late-stage when it's found. If I had known mutations in BRCA2, an oophorectomy (removal of ovaries) would be recommended. Since my mutations aren't known to be problematic, they're not sure if there is enough reason to worry about ovarian cancer. My medical oncologist said she would confer with the genetics specialist, and I should also discuss this question with my OB/GYN. (I have an appointment in October.) There seems to be a lot of negative side effects when getting ovaries removed pre-menopause, so I hope I can avoid it.

On Monday morning Ken and I will meet with the oncology nurse to review my entire treatment plan. It'll also be a chance for us to ask questions.

Incidentally, at the start of this appointment, I had a blood draw. In retrospect, I'm sure it was to get a baseline before I start treatment.

It's all very overwhelming. I really feel like I'm just being carried along on this river. I don't know where it's going. Whatever comes up, it is what it is. I just have to do whatever I have to do.

9/18/19: (26 Days Post-DMX) Physical Therapy Appointment #1

My physical therapist works out of my hospital's Cancer Center, so all her patients are cancer patients. All the breast surgery referrals in this location go to her, which makes me feel confident that she is a good match for my needs.

She said my range of motion is within reason for where I am post-surgery. She gave me 7 exercises to do daily.

I mentioned that there is a particular tightness in my right underarm. It feels like there's some kind of connective tissue stretched taut. She said it's cording. It's treated with stretching and massage, but the massage isn't something I can do myself because you need two hands to massage the "cords" in a particular way. She massaged the area for a few minutes, and some of the cords "snapped", which is a good thing. You would think I'd get ticklish with someone massaging my underarms, or that I might feel a bit of pain or discomfort with the "snapping", but that whole area is still numb! So I didn't feel a thing.

(Incidentally, I'm reading a book on breast cancer that says the numbness in my underarm area is caused by nerves being cut or stretched during surgery. If it's still numb after "a few months", it may be permanent!)

She said based on just my range of motion, she would typically schedule me for another appointment in a week. But because of the cording, I've got two appointments next week.

9/16/19: Phone Calls (Insurance Referral)

Ah, insurance.

Glad I have it, but it's still a headache trying to figure it out.

When making my physical therapy appointment, my physical therapist double-checked with a managed care coordinator, who said I was "all set" with a doctor's order, and I don't need a referral. I was wary, because the front desk at the Breast Center also told me the same when I made my appointment for the breast surgeon, but then it turned out I did need a PCP referral. 

I called my insurance, and they confirmed I do not need a referral for physical therapy. I do need a doctor's order, and the physical therapist needs to be in-network. The insurance representative agreed that I do normally need a referral for specialists (except OB/GYN), but a physical therapist is like a separate category or something. I don't know. 

Just glad to have things clarified so I can move forward with appointments.

(Book Review) The Cancer Journals by Audre Lorde

Someone in one of the Facebook support groups recommended this book. I actually had a hard time finding a copy. It was listed on Amazon at exorbitant prices, and not in stock at Barnes & Noble. The entire library consortium to which our local library belongs had only 1 copy, with a short hold queue. I finally found it available at the University at Buffalo Bookstore, because it's taught in one of their classes. I gave it 4 stars on Goodreads and posted the following review.

The actual book is a very brief 79 pages. The special edition additionally includes 20 pages of photos and posthumous tributes to Audre Lorde, who died of liver cancer in 1992. I am reviewing only the content written by Audre Lorde; I admit I did not read all the tributes that followed.

Audre Lorde was a black lesbian feminist poet. Her writing is at times poetic or edgy. It's important to keep in mind that this book was written in 1978, and the landscape of breast cancer detection, treatment, and prognosis has changed significantly since then; genetics as a factor in the occurrence of breast cancer was not yet known at the time. She advocated for going flat after a mastectomy, and was against wearing prostheses. She was sometimes skeptical of the medical establishment, and she supported exploring alternative therapies.

The book started out non-linearly. On page 26, Audre Lorde began to tell her story narratively.

One speech reprinted in this book was given after Audre Lorde had surgery for what ultimately turned out to be a benign growth, before she was diagnosed with breast cancer and had to undergo a mastectomy. Her speaking at this point in time is powerful. Many women experience the fear of breast cancer, and are thankfully spared. Their experiences and voices are valid in conversations about breast cancer. For every woman with breast cancer, the path began with that fear of suddenly becoming "forcibly and essentially aware of [your own] mortality" (p. 17), and a hope to be spared.

I don't think I would automatically recommend this book for anyone diagnosed with breast cancer and undergoing a mastectomy, but it's certainly worth a read if you have been diagnosed and are working through emotions, or are considering going flat. Reconstruction was still a relatively new post-mastectomy procedure back in 1978, but it's no surprise (given her feelings on prostheses) that she referred to it as an "atrocity". (p. 70) If you've already decided to go flat, this book can be a strong affirmation of your decision.

This book was a very personal read for me, so the rest of this space I will use to identify quotes that were especially meaningful to me, and why.

"These selected journal entries... exemplify the process of integrating this crisis [of breast cancer and mastectomy] into my life." (p. 8)

Having cancer is not a "phase". It's not something you "get over" or "put behind you". Being diagnosed with breast cancer and undergoing a mastectomy changes you forever. The non-existence of your breasts is a constant, daily reminder. There's always a chance the cancer will return, and you live with that "background noise of fear" (p. 12) and anxiety for the rest of your life.

"...[W]hat is most important to me must be spoken...the speaking profits me, beyond any other effect." (p. 17)

Well, I'm glad Audre Lorde spoke, because her speaking profited me, too. As a woman with breast cancer recovering from a double mastectomy without reconstruction and having a whole lot to process, reading this book assured me that I am not alone. So much of what she wrote - about fear, mortality, self-identity, pain (both physical and emotional), even the feeling of support when showered with the care and concern of others - resonated with me personally, even as the details of her experiences differed from mine.

"Once I accept the existence of dying, as a life process, who can ever have power over me again?" (p. 24)

Variations of this sentiment were repeated a few times throughout the book. Being diagnosed with cancer means being forced to face your mortality. It's just a really powerful idea that once you face the very real possibility of death, everything else is put into perspective.

"I am a post-mastectomy woman who believes our feelings need voice in order to be recognized, respected, and of use." (p. 7)

"I am also writing to...[set] down my artifacts, not only for later scrutiny, but also to be free of them. I do not wish to be free from their effect... but free from having to carry them around in a reserve part of my brain." (p. 54)

These words echoed my own feelings of why I decided to keep a blog about my breast cancer experience. The "of use" part is why I made my blog public; I hope my experiences can help support and reassure another woman in her time of uncertainty, anxiety, and fear.

"[The] socially sanctioned prosthesis is merely another way of keeping women with breast cancer silent and separate from each other." (p. 14)

"Prosthesis offers the empty comfort of 'Nobody will know the difference.' But it is that very difference which I wish to affirm, because I have lived it, and survived it, and wish to share that strength with other women... [W]omen with mastectomies must become visible to each other." (p. 62)

1 in 8 women will eventually be diagnosed with breast cancer, but you wouldn't know that by looking around you. There is a whole sisterhood of potential support for one another, but we don't know who has borne the burden of breast cancer because we try to hide the evidence of having been through it. I get it. Social norms are hard to go against. Women are "supposed" to have breasts. But what if we could recognize our warrior sisters on sight? I think it would be empowering. Of course it's a very personal decision whether or not to get reconstruction, and if not, then whether or not to wear prostheses. I have chosen no reconstruction, and I'm not sure yet where I'll end up regarding prostheses, but certainly this book has inspired me to more boldly embrace being flat, and has reassured me of the power and peace of not wearing prostheses.

I think it's worth noting that while Audre Lorde doesn't spend a lot of time reassuring women who do choose to wear prostheses, she does say that prostheses "can still serve a real function for the woman who is free enough to choose when and why she wears one or not." (p. 68) She was not completely against prostheses; what bothered her was how much immediately wearing a prosthesis was considered the normal, default thing to do, and how it was a way for women to reclaim their "old selves" before even allowing them the time and space and opportunity to get to know and love their new selves, sans breast.

9/14/19: (22 Days Post-DMX) I Spent Time with Friends while Flat

For the first time since my surgery, I saw friends while being flat and wearing regular clothes.

I did receive post-surgery visits from friends, but in those early days I always wore my surgical bra, the compression band, and a mastectomy shirt, plus I still had my drains. I felt like I was in "recovery mode", so it didn't really matter what I looked like. 

Yesterday, for the first time, I went to a friend's house, and I wore regular clothes. In fact, this was the same friend who gave me the wrap I was wearing. I was a little self-conscious at first, but it was fine. 

Today, a long-time friend from college was in town for business, and he came over for dinner. I told him about my surgery in advance. I pondered all day about what I would wear. I am usually a casual dresser, so I felt it would be uncharacteristic of me to go out of my way to look fashionable with a scarf or wrap while simply being in my own home. I finally decided to wear a lightweight button-down plaid flannel shirt. My flatness was obvious. I do have a set of Knitted Knockers just waiting to be used, but I don't feel ready to wear them while my chest is still bruised and numb, and my incisions are still healing. It also just felt more natural to not wear them. 

I very much enjoyed both evenings, and I think I felt fine in my flatness. In both cases, I was apprehensive at first, but any uneasiness I had melted away as we got to talking. We talked some about my cancer, but mostly about other things. If you ask me, nothing beats good conversation with good friends over good food.

I know these private interactions with close friends are rather different from public outings with possible interactions with acquaintances, but I feel it's progress towards being more comfortable in my own skin. It was a bit of practice being flat in front of others. I feel like I am building my confidence incrementally, each interaction serving as evidence that I can do it.

Things to Have for Double Mastectomy Recovery

I had to wait over a month for my surgery date. At first, I was disappointed because I urgently wanted the cancer out of me. After a while, though, I came to appreciate that I had time to come to terms with my surgery, time to celebrate my "old self" before my life would be turned upside down by cancer treatment, and time to prepare for my post-surgery recovery.

Now that I'm a few weeks out from my double mastectomy (no reconstruction) and bilateral sentinel lymph node biopsy, here's a list of things I've found helpful during my recovery period at home. (For the actual surgery, I made a separate post about Things to Bring to the Hospital for a Double Mastectomy.)

• Pre-Prepared Foods - I made plenty of meals that could easily be frozen and re-heated so my family would have some go-to options when needed. If you have a group of local friends who are looking for ways to help you, consider asking them to start a meal train for you. 
• Medication and Drain Log - Once home from the hospital, I recorded the date and time of each medication so I would know when I would be due for my next dose. I also kept track of how much I was draining, because the drains will be removed when the output decreases to a certain amount per day that your surgeon will determine. (My surgeon wanted 30 mL or less - 20 mL or less was even better - per drain per day for 2 consecutive days.)
• Water bottle with straw lid - This item was essential. After the surgery, my throat was dry and scratchy for a while, and drinking lots of water is supposed to help promote healing. I kept my water bottle with me 24-7, and I drank water religiously for weeks, with a goal of 64-80 oz. of water a day. The straw is important because it allowed me to easily drink without spilling while lying down in bed.
• 12" wedge pillow - Another essential item. Without it, it would have been impossible for me to gently lie myself down flat or get up from a flat position without using my arms. Even with the wedge pillow, my abs got a serious workout!
• Extra pillows with pillow cases - I kept one pillow on each side of me, to prop up my arms while lying down. Sometimes I liked having an additional pillow under my knees, or another behind my head. I also had a small pillow to pad my chest, on which I could rest my cell phone while using it, so my arms wouldn't have to support the weight of the cell phone. (In the first few days, even the smallest items felt heavy.) Additional pillows of various sizes - or a variety of mid-sized stuffed animals! - helped to fill in the gaps, especially under my arms when sitting up in bed.
• Husband pillow - For sitting up in bed. I placed the husband pillow on top of my wedge pillow, with large firm pillows behind the husband pillow for stability to support my back.
• Underarm mastectomy pillows - Perfect for providing a gentle cushion for my very tender underarms. I slept with these every night for weeks. In the first few days after surgery, also great for holding cold packs in place near my underarms when lying down.
• Tray - I kept a tray next to me in bed (propped up on a pillow) to hold everything I wanted within arm's reach, like my phone, the TV remote, and reading material.
• Things to pass the time while in bed - Being mobile is good for healing, so you'll want to be up and about as much as you comfortably can, but you'll also need plenty of rest. Prepare a few things to help pass the time pleasantly, like access to Netflix, books, magazines, Sudoku puzzles, coloring books, etc. 
• Mastectomy shirts, or any comfortable, loose-fitting button-down shirts - I had two mastectomy shirts, one more simple and one more stylish. My drains had loops that allowed them to be safety-pinned to any clothing, but still the drain pockets were useful for keeping the collection bulbs comfortably away from my skin. I also appreciated their snap buttons and/or velcro closures, which were easy to manage. (I honestly did not own any other short-sleeve, loose-fitting, button-down shirts anyway!) Even after the drains come out, I still needed button-down shirts until the range of motion of my arms improved enough for me to put on pullover shirts. This shirt, available in short and long sleeves, was widely recommended for its comfortable, loose-fitting fit, perfect for hiding drains. (I didn't get these for myself because I didn't know about them until well after my surgery.)
• Electric toothbrush - I already had one so this wasn't a new purchase, but I was really glad to have it. Especially in the first couple days, manually brushing my teeth would have been a challenge, and I even had to hold the electric toothbrush with both hands.
• Cleansing wipes - To freshen up before you're able to shower.
• Dry shampoo - To freshen your hair before you're able to shower. (I had never used dry shampoo before, and I used it only once before showering, so I have no brand to recommend. I just picked one randomly and it got the job done.)  
• Lanyard - When taking a shower with drains, I safety-pinned the drains to a lanyard around my neck, so the drains wouldn't dangle unsupported from the incisions. 
• Shower chair - I did not have one, but I wish I had. I had a bit of an episode when I took my first post-op shower. I waited a few extra days after I was allowed to shower to mentally prepare for seeing my scars, but I should have also thought about the physical toll. A shower seat would allow you to sit during your shower, to help make sure you don't unintentionally overextend yourself.
• Back scratcher - I also did not have one of these at first, but I wish I had! The limited range of motion of my arms meant I couldn't scratch my back, which was especially itchy under the surgical bra and compression band. Until I got a back scratcher, I had to ask my husband and kids to scratch my back for me, or else I made do with a wooden ruler!
• Step stool - Once I start regaining range of motion in my arms, having a step stool in the kitchen really helped me to be more functional, allowing me to reach things just a little higher in the fridge or in the cabinets that I wouldn't have been able to reach otherwise. 
• Mastectomy seat belt pillow - Any small, flat pillow will work to cushion your chest from the seat belt when you're in the passenger seat, but once you start driving, if your chest still hurts, a pillow that attaches to the seat belt would be more stable. The first kind I had didn't really sit in one place very well. A larger version stayed in position much better and spread the support across the whole chest area. (Incidentally, the smaller pillow became more useful when I eventually got my chemotherapy port; I actually positioned the small pillow on my shoulder, to lift the seat belt away from my port entirely.) 
• Comfort items - Not only are you recovering from major surgery, but you're also dealing with losing your breasts. That's a big deal. You need to think of your emotional and psychological well-being as well as your physical well-being. Be sure to surround yourself with things that bring you comfort, whether it's your favorite childhood stuffed animal, a new super soft blanket, music by your favorite artists, scented candles, whatever works for you.

I had read about many of these things before my surgery, but I wasn't sure if they were needed, or if they were all just "nice to have" items. Truth be told, I felt uneasy about spending money on things that might only be used for a few weeks. If you're wondering what you could do to help out a friend who is scheduled for a double mastectomy, I think anything from the above list would be a welcome gift! In fact, I was lucky to have received some of these items from friends and family before I even knew I needed them.

I'll also mention that there were a few other things that were widely recommended that I did not end up using. For each item, I can definitely see their value, and if I had them, I probably would have used them. But in their absence, I still managed just fine.

• Power recliner - I can see why a power recliner would be useful, because getting in and out of bed was not easy, even with the wedge pillow. However, a recliner isn't exactly the type of thing most people can just run out and buy or rent. My wedge pillow, along with other assorted pillows, were sufficient for me, though my abs definitely got a workout!
• Whole body pillow - Like the kind you might use during pregnancy. Again, I can see why this item would be helpful; it would likely cut down on the number of extra pillows you need! But I didn't already have one from my pregnancies, and I had plenty of pillows of various shapes and sizes, so I didn't miss it.
• Mastectomy pillow - This wrap-around pillow cushions both your chest and underarms, and I imagine it would be particularly useful while sitting. Without one, I got by with 2 underarm mastectomy pillows and a soft chest pillow. The chest pillow I only used when lying down.

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.

9/11/19: (19 Days Post-DMX) I Removed the Wedge Pillow

Last night I slept without the wedge pillow. I had the longest stretch of sleep since surgery!

My abs aren't really strong enough for me to comfortably get up from a lying down position without using my arms, so I had to wait until my arms felt strong enough to support at least some of my body weight.

My chest is still bruised, the area just in front of my underarms are still swollen, and the underside of my right arm, from my armpit almost down to my elbow, is still numb. So, I think it's best to continue sleeping on my back; I'm keeping one or two pillows next to me, to help prevent me from rolling onto my side or stomach.

Physical recovery seems to be progressing slowly but surely. Some days I feel like I'm in a holding pattern, but other days I can see improvement in my range of motion or arm strength.

9/9/19: (17 Days Post-DMX) I Drove

Today I picked the kids up from school. Ken came with me just in case. It went fine!

I definitely found myself driving slower than usual because I was being so careful. It wasn't effortless; I could feel muscles being stretched as I turned the steering wheel. Also, backing out of the driveway was non-trivial because I couldn't turn my torso as far as usual to look behind me. And I did feel kind of worn out afterwards.

I think driving will be good for me; it'll force me to use my arms in ways that they are normally used.

I'm going to ease myself back into driving, though. I'll only pick up the kids for a few days, and then I'll add in dropping them off, and then I'll work up to longer drives.

My chest is still bruised and sensitive, so I did use a mastectomy seat belt pillow that I received as a gift from my cousin. It worked well enough, though it didn't quite stay put, so I had to occasionally re-position it. I think a larger version may work even better, being more stable and spreading out the support across the whole chest and shoulder area.

Also, I think I will try to gradually reduce my use of the compression band. I'm going to start by taking it off only to sleep, continuing to wear it during the day. 

9/8/19: (16 Days Post-DMX) I Took a Walk and Tried on Clothes

Today was the first day I left the house. I don't think going to get my drains out counts because it was medically necessary.

There's no medical reason keeping me from going out. Even with drains in, I could have gone out, as long as I didn't drive.

I just haven't felt ready to face the world yet. Family and friends have visited me at home, which I've loved, but I don't feel ready to see anyone who doesn't already know about my cancer and surgery. I don't care about strangers, just people who I actually know.

If I don't wear prosthetics, won't they notice my flat chest? Even if they don't notice, I'll be self-conscious about it. Would they dare ask? Should I explain it pre-emptively? If someone asks, "How was your summer?", it would feel disingenuous to not mention the diagnosis and surgery. But if I do mention it, wouldn't that be "TMI" for a casual run-in? Am I just supposed to fake it to avoid uncomfortable conversations? That doesn't feel right either.

I could wear prosthetics and altogether avoid any inquiries, assuming they look natural enough to pass. But then will I feel like I'm hiding a secret? Might that also feel inauthentic? Anyway I don't feel ready to wear prosthetics yet because my chest is still sore and numb and nothing in that area feels natural right now.

So my family and I went for a walk. Well, my husband and son biked while my daughter and I walked. I have avoided walking in my neighborhood because I don't want to have to face either of the above scenarios with neighbors who don't know. So we went to a local biking/walking trail.

I'm still wearing the surgical bra and compression band (as recommended by my NP), and I wore a light button-down flannel over that. I'm glad the weather is getting cooler; at this point, I'd prefer clothes that hide, or at least don't bring attention to, my flatness, and maybe bulky fall and winter clothes will make that easier than light and breezy spring and summer clothes.

The trail is fairly well-used, and I dreaded running into someone I know, but luckily I didn't. I generally just avoided eye contact altogether. There was this one older gentleman on a bike, slowly coming towards me, who looked me right in the eyes and said a friendly, "Good morning." Just this one interaction made me start to tear up, I don't even know why. I'm just really emotional right now.

Anyway, I walked for a little over half an hour, and my Fitbit tracked just under 4,000 steps. I just took it nice and slow, and it felt really great to be active and outdoors.

I'm hoping now to start walking again every day, to get back to walking 30 minutes a day. I won't worry about keeping a "moderate" pace just yet; I'll start by just getting in the time, at whatever pace is comfortable. There's a secluded area behind our house where I used to do my walking, where I'm unlikely to run into other people. I hadn't gone walking there since the surgery because it entails going up and down a couple steep hills, but Ken and I walked it today to make sure I can handle it.

The other thing I did today was try on some clothes. I really dislike shopping, so in preparation for my new flatness, I re-activated my Stitch Fix account. I made a note in my "Style Profile" that I had a double mastectomy with no reconstruction and specifically want new clothes that "fit and flatter" my new body. I'll have to update my profile to be more clear, though, because two tops they sent me actually accentuate the flatness, rather than hide it. Haha. Maybe one day I will be ready to flaunt my flatness! But not now.

It was probably a bit early for trying on clothes because the limited range of motion of my arms made it difficult to get pullover tops on and off. I could not do it alone; I got kind of stuck and needed Ken's help! Ha.

I did keep a pretty scarf. I am not really an accessory person, but I figure it's worth a try.

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.