8/31/19: (8 Days Post-DMX) The Drains Tubes are Irritating My Skin

The discharge nurse said I should wear the compression band until I see my breast surgeon for follow-up within a week. The nurse on the phone corrected that misinformation and said I wouldn't see my breast surgeon for a few weeks, but I should wear the compression band until my drains come out "if I can tolerate it." She also said I could take it off at intervals for relief.

Well, it's getting harder to tolerate. Even when I fold over the compression band, it occassionally slips down, covering part of the drain tubing. My skin continues to be irritated, even a little blistered, where the tubes rub against my skin. I've been using Neosporin to relieve the itching and minor pain, but today I also put on band-aids to keep the skin protected.

I'm planning now to wear the compression band during the day, but take it off when sleeping at night. I suspect that's when most of the irritation occurs.

Also, for the last couple days, my drain output has apparently plateaued at about 35 mL each per day. So maybe I won't get them out as early as I had hoped.

8/30/19: (1 Week Post-DMX) I Stopped Taking Tylenol

For the first several days after surgery, I felt a little better every day.

The last couple days, I've felt mostly the same. Still no pain, just some achiness and soreness, which is tolerable. Mostly it's my underarms that are sore and swollen, especially my right side, which also feels numb.

Yesterday I took 500 mg of Tylenol upon waking and just before bed.  But today I didn't take any Tylenol, and I still felt pretty much the same. Going forward I'll take it as needed.

I also asked Ken to very gently rub my shoulders and upper arms and omg, it felt SOOOO good! He said my muscles felt like I had been working out.

8/29/19: Phone Calls

I called my nurse today.

First, I wanted to see about getting an appointment with a medical oncologist. This is the doctor who will provide further treatment if I need chemotherapy, radiation, or hormone therapy. She said to expect a call today or tomorrow to schedule the appointment. I did receive a call later in the day, and I now have an appointment on the calendar.

I also asked if the Breast Center is open on Labor Day Monday, because I am expecting my drains to meet the requirement for removal (less than 30 mL each for 2 consecutive days) over the weekend. She confirmed they are closed on Labor Day, but also said my breast surgeon actually prefers the drain output to be less than 20 mL each for 2 consecutive days, so the long weekend probably won't be a problem.

8/28/19: (5 Days Post-DMX) I Took a Shower

Warning: This post includes a photo of my surgical drains.

I am mostly up and about now, but I do get tired out. I'm able to spend more time sitting up in bed, and here's the set-up I came up with.

The husband pillow is placed on top of the wedge pillow to give it more height. I have two large, firm pillows behind the husband pillow to provide more stability to support my back. I'm still using the two underarm mastectomy pillows; my underarms and the areas just in front of them have been swollen and bruised, presumably from the sentinel lymph node biopsy. The stuffed animals are there to provide extra support for my arms so I can rest them comfortably, especially when holding a book. (Any small thing feels like a weight on my arms.)

My skin has been irritated where the drain tubes press against my skin. This is where most of the itchiness occurs. Last night I put some Neosporin on it. It includes an analgesic ingredient which helped a lot.

I also folded over the bottom of the compression band so that the drain tubes are now exposed and not pressed against my skin. This way I get relief from the irritation while still keeping my chest area compressed.

I'm tapering off my Tylenol so that I'm taking 500 mg every 8 hours instead of 1000 mg.

I was allowed to shower 2 days after surgery, but I didn't feel ready yet. Yesterday, I decided I would shower today, so I had time to mentally prepare.

I've seen photos of scars from a double mastectomy with no reconstruction, mainly from posts in Facebook support groups. So, I know there's a wide range of possible outcomes, from really flat, clean, symmetrical results to unfortunately lumpy, uneven, disappointing results. The uncertainty of how my scars will look has been a big source of anxiety for me. I think having satisfactory results would go a long way in helping me to accept not having breasts.

I waited for Ken to come home, which was critical because I really needed his help.

I took off the compression band, then the surgical bra... then I took a deep breath and removed the padded dressing. I'm not going to lie, I cried. The unhealed scars are ugly. My entire chest area is bruised, some areas yellow and green, other areas black and blue. My underarms are swollen and one side is numb.

But it's nothing I didn't expect. Really, the incisions look good. They're closed with surgical glue. They are clean and straight and there's no excess skin. It's what I wanted. I would recommend my breast surgeon in a heartbeat, it's clear he's got skillz.

Anyhoo, after a good cry I went on with the shower. In terms of logistics, once I took off the compression band and surgical bra, I had to figure out what to do with the drains so they wouldn't dangle unsupported from the incisions during the shower. I had read some posts in a Facebook support group about pinning the drains to a lanyard around my neck, so that's what I did, and it worked really well.

The shower felt fantastic. I took it slowly, so I had a nice, long, hot shower. What I didn't know, though, is that I should have had a shower chair...

When I stepped out, I was pat-drying as instructed, and I very suddenly felt light-headed. Ken was right there, so he helped me sit down on the toilet seat. I took slow deep breaths. My heart raced, and the feeling did not pass. I knew I needed to lie down, but how would I get to the bed?!

Ken supported me as I slowly made my way to the couch in our bedroom; it's closer than the bed. I made it as far as the bathroom door, and then I had to stop. I didn't pass out, but the light-headedness got worse, my vision got dark, and Ken later said my knees weakened. I closed my eyes, we paused for a bit, but knew I had to get to the couch (just a few steps), so we forged ahead. The second I sat down and could lean backwards, I felt better. Ken got a stool for me to put my feet up, and I felt even better. Drinking water got me feeling almost back to normal.

I sat like that for maybe like 10-15 minutes. I think the shower just took a lot out of me.

So, once recovered, I applied clean padded dressing (given to me during hospital discharge), and Ken helped to tape them in place with medical tape. Replacing the surgical bra wasn't trivial because it's elastic, and I didn't have the arm strength to pull it enough to close the hook fasteners. Ken had to do it for me, and he helped me with the compression band, too.

So now I'm fresh and clean, and also tuckered out. I think I'll sleep well tonight.

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!!

8/27/19: (4 Days Post-DMX) I Limit Computer Use and Sleep Odd Hours

I occasionally feel a twinge of pain in my right breast area. I assume it's located somewhere along the incision. (I can't tell for sure because I still haven't taken off the surgical bra and compression band...) I actually think it's from over-extending myself on the computer. You don't think that using a mouse would be very taxing, but moving and clicking the mouse seems to strain my right pectoral muscle! After sitting at my computer for a while, I'll get that twinge of pain. It goes away if I just sit still. So if I feel it, I take it as a sign to get off the computer and lie down to rest for a while.

I think I'm getting enough sleep, even though I'm keeping odd hours. Since I'm napping and resting during the day, sometimes I'll wake up in the middle of the night and not feel a need to go back to sleep. I frequently wake up with a dry mouth, feeling very thirsty, and drinking lots of water means I'm waking up to pee more than usual, too. If I can't get back to sleep right away, I might just read or surf the web for a while. I don't have to keep any real schedule during the day at this time, so I figure it's okay.

Things to Bring to the Hospital for a Double Mastectomy

Before my double mastectomy (with no reconstruction) and bilateral sentinel lymph node biopsy, my friend's friend gave me some suggestions on what to bring to the hospital. It was super helpful because some of the items I definitely would not have thought to bring otherwise.

Generally speaking, the hospital provides everything you'll need, but there are some things you might want to consider bringing if you would like to try to make your time in the hospital more comfortable.

Here are the things I definitely needed:

• Food/Snacks - In case you get hungry between hospital meals, or in case you don't like the hospital's food.
• Phone with extra-long phone charger
• List of people to update directly, and how to contact them - If possible, delegate this to whoever is accompanying you in the hospital. 
• Medication and Drain Log with pen/pencil - No need to keep track of anything while in the hospital, but I recorded the time of my last in-hospital medications so I would know when I would be due for my next doses at home. Once home, 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.)
• Mastectomy shirt (or any loose-fitting button-down shirt) to wear home - A mastectomy shirt's inside pockets to hold your drains may not be necessary because the drains can be pinned to any piece of clothing, but they were convenient for keeping the drain bulbs comfortably away from my skin. Plus the snap buttons were easy to manage. (I honestly did not own any other short-sleeve, loose-fitting, button-down shirts anyway!) 
• Clean underwear
• Easy-to-put-on shorts/pants to wear home
• Slide-on/Easy-to-put-on sandals/shoes to wear home
• Flat-ish pillow to pad chest from seat belt for drive home - I ended up using a squishy flat stuffed animal!

And here are some things you don't need to bring, but having them might help you to be a bit more comfortable during your hospital stay, especially if you expect to stay more than 1 night:

• Water bottle with straw lid - Drinking lots of water is supposed to be good for recovery. The hospital of course will provide water and cups, but the water bottle with straw lid would enable you to drink while lying down.
• Lip balm - My lips were dry after surgery.
• Mouth wash or breath mints - My hospital provided a disposable toothbrush and toothpaste, but manually brushing my teeth that first day would have been a challenge for me.
• Cleansing wipes - In case you want to freshen up.
• Hair brush & hair tie - If you have long hair and want to pull your hair back, but you'll probably need someone else to do it for you because of the limited range of motion of your arms. Another idea is to braid your hair before surgery. (I got this piece of advice too late to use for myself!)
• Socks - If you're not fond of the one-size-fits-all hospital grippy socks. (I actually liked the grippy socks because they provided traction for safety when walking.)
• Tissues - No tissues in my hospital room.
• Hand sanitizer - My room had a wall-mounted dispenser, but I appreciated having a small bottle of my own so I wouldn't have to get out of bed.

I am so fortunate to have some very thoughtful friends who gifted me some of these items in advance, before I even knew I needed them!

I spent one night in the hospital, and most of that time I was sleeping or just resting. I didn't need anything besides the in-room TV and my phone to help keep me occupied for small intervals of time.

For a list of items that I found useful for post-surgery recovery at home, check out my post about Things to Have for Double Mastectomy Recovery. 

8/26/19: I Tried Dry Shampoo

I was allowed to shower yesterday (2 days after surgery), but I don't feel psychologically prepared to look at my scars yet.

I can usually go about 2 days without washing my hair before I start to look and feel like Professor Snape. I'm fine not showering during these early days of recovery, and I have cleansing body wipes to use in the meantime. But my oily hair was really starting to bug me.

I have no prior experience with dry shampoo, so Ken just picked a couple products randomly for me. I used Dove. It seemed to get the job done, though it's much too fragrant for my liking. My hair still looks kind of shiny, but it definitely got rid of the greasy look. It feels clean enough, but not like a just-showered clean. I can see how dry shampoo could be a good option if I am unable to take a shower - like now - but I don't see myself using it as a regular alternative if I could just as easily wash my hair in a shower.

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.

8/25/19: (2 Days Post-DMX) I'm Settling In

I can't explain it, but I really feel okay. More sore than in pain. I'm still only taking 1000 mg Tylenol every 8 hours. I guess maybe so far I'm 50/50 in and out of bed.

Here is a picture of my set-up, with a comfy new super soft blanket that my friend gave me just before surgery.

The 12" wedge pillow is critical. Without it, I think it would be literally 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 are getting a serious workout! And my neck is sore, too, maybe from using my neck muscles to help me sit up from a lying down position.

I've got one pillow on each side to prop up my arms.

The two red heart-shaped pillows are underarm mastectomy pillows, another thoughtful gift from my cousin. They are perfect for providing a gentle cushion for my very tender underarms. The area just in front of my armpits, below my collar bone, is pretty swollen, so I'm using cold packs there, and the underarm pillows are great for holding those cold packs in place when I'm lying down.

The squishy dragon pillow turns out to be a perfect chest pillow, where I can rest my cell phone while using it, so my arm doesn't have to hold the weight of the phone, which is not negligible!

The tray (Ken's idea), propped up on a pillow, is where I keep things I want in arm's reach, like my phone, the TV remote, and reading material.

My throat is dry and a bit scratchy. I think because they did stick some kind of tube in my mouth during surgery. The water bottle with straw is essential for drinking while lying down.

8/25/19: Ken Filled My Prescription

Ken filled my prescription for oxycodone, just in case.

The retail price is listed as $15.29, but our prescription co-pay was $5.11.

Total cost to date: $18,116.00
With insurance, cost to me: $895.67

8/24/19: (1 Day Post-DMX) I'm Home

Warning: This post includes a photo of my surgical drains.

I had one overnight visit from the nurse to attend to my IV antibiotics, but otherwise I slept alright.

A doctor checked in with me in the morning. He didn't examine me, just talked to us about what to expect as I recover from surgery.

Both the day and overnight nurses were more forthcoming in recommending the oxycodone, talking about being "free from pain". One of the nurses said that being pain-free would allow me to move around more, and being mobile is important to recovery. But on a scale of 1-10, I feel like I range from 2-4. And it isn't quite so much pain, as it is a kind of achy feeling. It's tolerable, and it isn't keeping me from getting up and walking around. When I got discharged, they gave me a printed prescription for oxycodone to fill as needed, but in the meantime, I think the Tylenol is sufficient.

Before I got discharged, the nurse gave me some cold packs to apply to painful areas as needed over the next couple days.

She also gave us two specimen cups and showed us how to empty and measure my drains. The fluid collected is expected to lessen each day, and at some point the drains will come out.

Prior to my surgery, one of my cousins gave me a wonderfully thoughtful gift, including a couple mastectomy shirts. I changed into a mastectomy shirt to wear home, but it turned out I didn't need the inside drain pockets because the drains are safety pinned to small loops on a compression band that's wrapped around my chest.

Still, the mastectomy shirt is a life saver. I do not own any other short-sleeve, loose-fitting, button-down shirts! Without this mastectomy shirt, I would have resorted to an old oversized long-sleeve button-down shirt, which would not have been nearly as comfortable. The mastectomy shirt has the added bonus of having snap buttons, which is much easier to manage in my current limited capacity. I think it will be a while before I can wear anything besides this mastectomy shirt!

For the drive home, I needed to cushion my chest from the pressure of the seat belt. I had brought a small pillow, but found it was much more fun to use the soft squishy dragon that my friends gave me just prior to surgery.

We were home in time for lunch, and I was happy to enjoy a bowl of Taiwanese beef noodle soup that my dad had made for me in advance. (Protein is supposed to be good for wound healing.)

I'm following advice and drinking lots of water! Which means I'm also peeing a lot.

Mostly I feel fine, just my arms make me feel like a T-Rex. I can move my arms freely from the elbows down, but anything involving the movement of my upper arms causes soreness in my chest. 

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.

(Ken) Surgery Success

This is Ken posting for Irene.

Irene was up and walking (assisted) this afternoon after her three hour surgery.
Everyone said that it went well, nothing unexpected!

The kids and I are visiting her in the hospital right now - they are keeping her overnight to make sure everything is good.  So we should be home tomorrow!

Irene will post details when she is up for it.

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.

(Book Review) The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee

After I was diagnosed, I felt an odd compulsion to read this book, which had sat unread on our bookshelf for years. I think I saw it as a kind of opposition research. Anyway, it was worth the read. I gave it 5 stars on Goodreads and posted the following review.

This book is impressively approachable. I found the author's writing exceptionally concise and engaging, though admittedly I got a bit muddled in trying to understand the DNA research towards the end.

It's a sweeping account chronicling everything related to cancer from causes and prevention to detection and treatment, from laboratory scientists making discoveries to physician researchers running clinical trials to the individual patients facing down cancer with bravery and dignity.

As the author lays out the history of cancer, there are incredible stories of pathologists and chemists and physician-scientists whose individual contributions came together over many decades to eventually result in the discovery of a new cancer or a new chemical to treat cancer. It was nothing short of fascinating to follow the history of chemotherapy through textile dyes and mustard gas. Ideas changed and developed and were tied back to concepts first proposed centuries earlier.

Much of the history of cancer research has taken place in Boston, and growing up in this area, it was particularly enlightening for me to learn about the stories behind well-known institutions and individuals like the Dana-Farber Cancer Institute, the Jimmy Fund, and Vannevar Bush. (As a student at MIT, I walked by a room named for him almost every day, and attended events in the room, but never had any idea who he was.) I even learned that a nearby town, Framingham, is the site of a massive epidemiological study that has led to a number of medical findings.

Remarkably - and this is altogether beside the point of the book - I could not help but take note, especially in today's political climate, how a great many of the researchers in the U.S. who made strides in the fight against cancer were immigrants or from immigrant families. I also saw parallels between the tobacco industry's refusal to acknowledge the dangers of cigarette smoking and the present-day gun industry's refusal to acknowledge the dangers of gun violence. If Big Tobacco, "an industry once thought virtually impregnable," (p. 267) could eventually be well-regulated, then maybe there is hope that the gun industry could one day be well-regulated, too.

On a personal note, this book was a gift to my husband (a teacher) from a student who wanted to share the book that had an outsized impact on him, inspiring him to want to become a doctor. The book sat on our shelf for years, and I didn't pick it up until I was diagnosed with breast cancer myself. Suddenly, I felt drawn to the book, and reading it felt like a kind of opposition research. While the book discusses many different cancers from leukemia to breast cancer to prostate cancer, a good portion of the history of cancer centers on breast cancer. I repeatedly felt that much of the information was directly relevant to me. I certainly now have a better understanding of how surgery, radiation, chemotherapy, and hormone therapy are all tools in an oncologist's toolbox, but figuring out which tool will work, and how exactly to use it, is highly dependent on the specific stage and type of cancer being treated.

What is clear from this book is that I am thankful for - indeed I feel deeply indebted to - every person ever drawn to study, treat, and attempt to cure cancer, every patient whose diagnosis, illness, treatment, and death helped to further the understanding of cancer and push the community towards a cure. Poignancy abounds in the history of cancer. Scientists who discovered the healing properties of radiation, only to succumb themselves to radiation-induced cancer. Patients who made up the statistics that drove the research towards a cure, but who were all individual persons with families and interests and full lives they weren't ready to leave.

It's been a very long, arduous, terrifying fight. The descriptions of the earliest mastectomies are horrifying, and I feel immensely grateful for being lucky enough to be diagnosed in 2019, when anesthesia, sterilization, and pain killers are customary parts of the procedure. Particularly astonishing to me was the realization that much of my treatment as a cancer patient is heavily reliant on discoveries and advances in cancer medicine that took place relatively recently, over the course of my own lifetime.

I would not go so far as to recommend this book to cancer patients. I might be a weirdo in the extent to which I am curious about what I am up against. But it's definitely a book worth reading for anyone who wants to know more about cancer, for whatever reason.

8/19/19: Phone Call + Email

Hm. I know people are only human, and tasks can sometimes fall through the cracks. My surgery on Friday is like the Main Event for me, but of course I'm just one of many, many patients in the hospital.

I'm just trying to manage my anxiety. Right now it's not bad, and I'd like to keep it that way!

On the pre-operative phone call last week, the nurse said she would send me an email with complete instructions. I didn't get the email on Friday, so I called the hospital this morning. The nurse who answered the phone sent me the email immediately and had me confirm receipt while on the phone.

Interestingly, contrary to what the nurse said on the phone, the printed instructions clearly state, "Do not shave near where you will have surgery. Shaving with a razor can irritate your skin and make it easier to develop an infection."

The email also does not include full instructions for how to use Hibiclens. In fact, it says, "Hibiclens solution and instructions for how to use it will be given to you at your pre-admission visit." But I don't have a pre-admission appointment. So I found these instructions posted by the Memorial Sloan Kettering Cancer Center. And it sounds like I can buy it myself at a pharmacy.

Edited to add: I was able to buy Hibiclens at my local CVS. I don't have the receipt so I can't remember what I paid exactly, but CVS.com lists the price as $13.49.

Total cost to date: $18,100.71
With insurance, cost to me: $890.56‬

8/16/19: Pre-Operative Phone Appointment

As instructed by the letter with surgery information, I called the hospital this morning for a pre-operative interview.

Mostly the nurse asked me a lot of questions related to my medical history.

She also gave me some pre-operative instructions, some of which were listed on the letter I already received, but some which weren't.

No eating or drinking anything, not even hard candy or water, after midnight the night before my surgery.

To get a jump on pain management, I should take two 500 mg Tylenol tablets before leaving the house on the morning of the surgery. It's okay to have a sip of water with those pills. I should not take Advil before or after the surgery. (Something about an increase risk of bleeding.)

I'm supposed to take a shower the night before and the morning of using a special antiseptic soap called Hibiclens. The letter I received hadn't mentioned showering at all. The nurse on the phone said she'd email me additional instructions including information about the special soap.

On one of the Facebook groups I joined, there was a whole thread about whether or not it's okay to shave before surgery. Some women are instructed not to shave for a number of days beforehand. I asked about this, and the nurse said it's okay to shave, just be careful not to nick myself, especially in the underarm area, which is close to the surgery site. Well, since shaving nicks are accidents, and I can't very well ensure that I won't nick myself unintentionally, I'm just going to err on the side of caution and not shave the week before, just in case.

It's a little hard to believe that one week from now, I will be in the operating room.

8/15/19: I Got Billed for the Breast Surgeon Appointment

On July 1, our health insurance changed to a high deductible plan, so instead of paying co-pays, we basically pay everything out of pocket until we hit our deductible.

7/1/19: Breast Surgeon Appointment: $363.00
With insurance, I paid: $357.07

Total cost to date: $18,087.22

With insurance, cost to me: $877.07

8/3/19: I Miss My Mom

My mom has Parkinson's Disease. It's late-stage, very advanced. She can't move or talk, and she's 100% dependent on assistance for everything. Thanks to my dad, she's very well taken care of. I visit them once or twice a week.

I do a lot of compartmentalizing. I am easily overwhelmed in general, so I try to keep each Big Life Concern in a separate mental box. My mom's Parkinson's Disease is separate from my kids' life-threatening food allergies, both of which are separate from my breast cancer.

But sometimes the integrity of those compartments weaken, and the situations get conflated.

If my mom were healthy herself, I know she'd come to help us through my post-surgery recovery. She'd make me yummy soups.

It's fine, though. We'll be okay. My dad is an amazing cook, and he'll set us up with plenty of food.

Also, my mother-in-law will be here for the first week after sugery, and she's sure to be a big help. Even though I'm the patient, I know I'm not the only person who needs support, and I'm glad my husband will have his mom here with him.

The other night, a friend and I went to see the movie The Farewell. This is how AMC Theatres describes it:

After learning their beloved matriarch has terminal lung cancer, a family opts not to tell her about the diagnosis, instead scheduling an impromptu wedding-reunion back in China. Headstrong and emotional writer Billi rebels against her parents' directive to stay in New York and joins the family as they awkwardly attempt to rekindle old bonds, throw together a wedding that only grandma is actually looking forward to, and surreptitiously say their goodbyes. 

The Chinese-American main character, Billi, struggles with understanding how the family can keep such important news about her own health from her grandmother. I can't remember exact quotes, but one character says something like, sometimes the fear of cancer and dying is worse than the cancer itself. Another character tries to explain that in China, a person is not just an individual, they are a member of a family, and it's a kind of duty and honor to bear the burden of bad news for a loved one. (The movie explores the situation through the eyes of a Chinese-American, but it doesn't make a judgment of whether the decision is right or wrong.)

Anyway, the roles are kind of reversed for me and my mom, but I haven't talked to her about my diagnosis. It's not clear if she would even understand. When hospice care providers come to the house, they always remark on how comfortable my mom looks. So it's okay if my mom doesn't know, if her not knowing can allow her to feel more at peace.