How to Help a Friend with Breast Cancer

I am sincerely grateful for the support and encouragement of my friends and family. Many of the suggestions below were generous acts of kindness that I received but never expected. Thanks to their example, I hope I can pass along some ideas that might make someone else's cancer journey just a little less lonely. (I first drafted this post in pre-COVID times, so I hope it goes without saying that all COVID-related precautions should be taken when necessary.)

When you get diagnosed with breast cancer, a lot of people say, "Let me know if there's anything I can do to help." Most people will mean it. But still, a lot of people's support tends to end with that offer, because they really don't know what they can do to help. And unless they are in the patient's inner circle and/or live very close by, they are unlikely to be called upon with specific requests for help. Here are some ideas to bridge the gap.

Really Try to Understand Them

Even the most well-meaning people can think they "get it", when they might not really. I thought this essay, written by an oncology nurse who was diagnosed with cancer herself, captured the sentiment well:

 Dear Every Cancer Patient I Ever Took Care Of, I'm Sorry. I Didn't Get It

Talk to Them, and Let Them Know They Can Talk to You
Most people are well-meaning, but not all words are helpful. While saying something is arguably better than saying nothing, some words just really aren't helpful. There are lots of articles written about this already, so before you reach out, take a few minutes and Google "what not to say to someone with cancer".

Then again, seeing all the things you shouldn't say can be intimidating, and that might make you feel even more at a loss of what to say. So, what should you say to someone with cancer? Personally, I appreciated it when people did the following:

1. Acknowledge the cancer / diagnosis / treatment.
2. Show love, e.g., with words of caring, a hug, extra emojis in a text, or a little something in the mail. (See below for ideas.)
3. Let the person with cancer lead the conversation.

You could say something as simple as, "I am so sorry about your diagnosis / surgery / chemo / radiation. Do you want to talk about it?" The person then knows the door is open if they want to tell you how they are really doing, and if not, they can easily say no and re-direct the conversation to something else.  

Maybe reading all this makes interacting with someone with cancer seem even more daunting and fraught with possible mistakes. The truth is, there is no "right way" to talk to someone with cancer because everyone is different. In Facebook support groups, I've seen both the following complaints, and everything in between:

"My friends don't understand me. They keep asking about my cancer. I don't like to think about it, I just want to live life normally! I wish they would just treat me like nothing is wrong."

"My friends don't understand me. They treat me like nothing is wrong. Everything is different now, every day is a challenge! I wish they would ask me about what I'm going through and how I'm doing."

If you don't know what kind of person your friend is, just ask them. 

Be optimistic, but also acknowledge the gravitas of the diagnosis.
Regarding what to say, or not say, I hope I can describe one particular concern without seeming ungrateful or judgmental. In my experience, some people, out of an abundance of good intentions, actually respond with a little too much positivity. They're sympathetic, but characterize cancer as a mere bump in the road of life. If they personally know more than one breast cancer survivor, they may inadvertantly give the impression that having cancer is No Big Deal. They might even come across as unintentionally dismissive, referring to cancer treatment as "just a phase". While every ounce of positivity is welcome and appreciated and even necessary for survival, the bottom line is that cancer - in any form, in any stage, regardless of what type of treatment is needed - is deadly. Having cancer is a Big Fucking Deal. It is immensely helpful and essential to be optimistic, but please also acknowledge the fear and anxiety that comes with any diagnosis. It's scary, it's altogether life-changing, and the uncertainty of prognosis, especially in the early days of diagnosis and treatment, should not be downplayed.

Give Them Practical Gifts

Breast cancer treatment usually involves some kind of surgery to remove a tumor. In my experience having a double mastectomy, the hospital will provided everything that is needed, but there are plenty of nice-to-have items that can make recovery a lot more comfortable. Consider giving your friend items for their hospital stay or for their post-surgery recovery.

Even though I knew about some of the recommended items, I was hesitant to purchase things that would only be used for a brief period of time. And that's exactly why some of those items make perfect gifts - they are things a patient could use and appreciate, but might not buy for themselves. 

Give them self-care items.
I had a handful of thoughtful friends who brought me nice-to-have, pick-me-up items that I never would have gotten for myself, but which certainly went a long way in cheering me up. Things like motivational socks, coloring books, a super soft blanket, stuffed animals, scented candles, chocolates, balloons, magazines, tea, etc. Sometimes the best gifts can be the ones that aren't necessarily useful, but bring a lot of comfort, and just lets your friend know you are thinking of them. 

Spend time with them throughout their active treatment.

During surgery, radiation, and chemotherapy, some people tend to stay away, not knowing what to do or what to say. Try to resist that feeling, and maintain your usual level of contact. If you live close by, one of the best things I received was simply my friends' time. Whether or not we talked about my cancer, it was just good to go out and be distracted from my own worries and anxieties. 

Don't wait for your friend to reach out to you. Take the initiative and ask if your friend would like to go out for a walk, see a movie, or out to eat. If they aren't up for going out, offer to visit them in their home. If they need to have surgery, consider scheduling some time to visit them during their recovery. If they're getting chemo, volunteer to drive them and keep them company during treatment. 

All that said, don't be pushy. Sometimes, I just didn't feel up for being social. Some days, or even whole weeks, I just wanted to hibernate and be alone. It can be a delicate balance of giving your friend space, but also letting them know you are available to hang out whenever they are ready. 

Send supportive texts / emails / phone calls / old-fashioned cards in the mail.
For me, it was really meaningful simply knowing that my family and friends were thinking of me. It truly was uplifting to know that people were praying for me, wishing me well, and just holding me in their positive thoughts. Of course, the only way for me to know that I was being thought of was for people to tell me so!

It helps to consider your friend's personal preferences. As an introvert, I sometimes shied away from phone calls, and I didn't always feel up to texting. Emails were nice, because I could reply on my own time. I particularly appreciated receiving cards in the mail. Unlike other outreach methods, I could just bask in the thoughtfulness of the sender, knowing they were thinking of me, without having to worry about responding. I lined up the cards I received on my dresser, and they were a daily source of encouragement for me; the support they provided lasted long after the day of receipt.

Offer food during post-surgery recovery and chemotherapy / radiation therapy.
So many people equate food with recovery. If you live close by, and you like to cook, definitely offer it up. Ideally, make sure your meals freeze well, so your friend can use them according to their own schedule of needs. Also, ask your friend if they would prefer you to bring over food at a particular time; if everyone gives food right before and after surgery, your friend may actually run out of fridge and freezer space! A meal delivered a week later may be more convenient. During chemo, it might be most helpful to offer to prepare meals for the day of treatment, or on whatever day of the cycle your friend feels the most tired. If there is a large circle of local friends who are looking for ways to help, ask your friend if they would like for you to set up a meal train for them.

If your friend repeatedly declines offers of food (beyond the well-meaning, "Oh, you don't have to do that!"), please respect their wishes. Maybe they really do already have enough food.

In my case, it wasn't a no-brainer to accept all offers of food because my kids have life-threatening food allergies. If you don't live with a food allergy, you may not realize that instead of bringing comfort, food prepared outside the home can actually be a source of stress. Instead of just being able to graciously accept everyone's homecooking, I had to think about whether or not the person offering us food fully understands how to prepare allergen-free food, including being aware of cross-contamination risks. If you are going to offer food, please reassure your friend that you will respect all dietary restrictions, and take any additional steps to set their mind at ease. A couple of my most thoughtful friends even snapped photos of ingredient labels on all packaged products, and then emailed them to me, so I could rest easy knowing their lovely meals were safe for the whole family.

If you're not one to cook, or if your friend isn't comfortable with offers of homemade food because of dietary restrictions, ask them if they have a favorite restaurant that meets their needs, and give them a gift card. Ordering take-out is just as helpful as having prepared foods at home. And after being cooped up recovering from surgery, or being too tired from chemotherapy or radiation therapy to cook, going out to eat is a nice, low-key way for the whole family to have a sense of normalcy.

Another option is to have something delivered. For those with food restrictions, fruit baskets can be a great option. I did receive a few goodies that weren't safe for my kids' allergies, but I still enjoyed them myself, and they were perfect for setting out for visitors who came to see me.

Send flowers.
Not long ago, I came across this article about how flowers can actually have measurable positive therapeutic effects on people recovering from surgery, including lower ratings of pain and anxiety. All I know is that I was instantly heartened at the sight of fresh flowers; they were a sure-fire pick-me-up, and were a welcome bit of cheer.

Provide household assistance.

If you live close by, offer very specific assistance. General offers like, "Let me know how I can help," are well-meaning, but seldom called upon. It also puts the burden on the patient to reach out to you. Instead, say something like, "I would like to take you to one of your chemotherapy / radiation treatments. What does your treatment schedule look like?" Or, "I can drive your kids to/from school any day, just text me when they need a ride." Or, "I have time to rake your leaves this weekend. When is a good time for me to come over?"

I'm a very private person, so I did not reach out for nor accept much help around the house. But I know for sure that many people would love it if someone could do their grocery shopping or weed their garden. Of course, if they politely decline, respect their privacy, and don't take it personally.

Support family members and others who are affected.
Of course the person who was diagnosed needs your attention, but your friend's closest family members might also need some help. Is there a spouse, children, or parents who could use some support? It can be very difficult to watch and feel helpless while a loved one undergoes cancer treatment. If you are close with your friend's family, touch base with them and check in. Send them an encouraging note, or offer to take them out. 

Provide support from diagnosis to surgery, throughout chemotherapy and/or radiation, and afterwards. 
When a person reaches out to share their diagnosis, that's when most people respond with supportive messages. But try not to let your support end there. If you know your friend's surgery date, send a gift or a card, and check in with them. Surgery is scary, and it helps to know that people are thinking of you and wishing you well. Even if they aren't up for visitors, or even talking on the phone or texting, just let them know you are cheering for them.

Besides surgery, some breast cancer patients may need radiation or chemotherapy. Whatever the regimen, active treatment is hard. Even if someone looks good, and is lucky enough to experience minimal side effects, the disruption to their normal routines, the emotional burden of simply living with cancer, can weigh heavily on them. If hormone therapy is involved, treatment may drag on for many years. Chances are, your friend needs just as much support throughout radiation and/or chemotherapy as they did getting through surgery, or when announcing their diagnosis.

Even for the most well-meaning of friends, attention tends to fade away over the long course of radiation and/or chemotherapy, which can last weeks or months. It's understandable that life goes on for everyone. A lot of cancer patients actually feel the most in need of support once active treatment ends. After spending the majority of their time and energy focused on fighting cancer, for however long, suddenly not having that focus can be disorienting. This meme that I saw posted in a Facebook support group sums it up.

Many cancer patients will always live with a fear of recurrence. While active treatment takes its toll on the patient's physical health, the long-term burden of cancer can have a significant emotional and psychological components as well. There isn't always a sense of "returning to normalcy" or "putting it all behind you." Many patients need to find a "new normal", one that may include persistent side effects from treatment, or surgery scars that are a daily reminder in the mirror. 

There are some people who just want to move on from cancer, they put it behind them and forget about it. And there are others who live with it daily, and might appreciate talking about it every now and then. There is no one-size solution. If you think your friend might be feeling the lingering burden of cancer, check in with them, and let them know you are still thinking of them.

8/7/20: Lupron

I overslept this morning! I had a 10:00 appointment, which means I'd normally leave the house at 9:15; the drive is a solid 30 minutes, and I like to leave a little extra time in case of traffic, plus I like being early. 

Well, I woke up at 9:25. I sat up in a panic thinking, "What day is it?! Where am I supposed to be?!" It took me a few moments before I realized I had 5 minutes to get ready and be out the door. I rushed around and left the house a little after 9:30. I literally walked through the hospital doors at 10:00 exactly. 

I wasn't late, and I'm sure this story doesn't seem like a big deal to most people. But I am just the type of person who likes to arrive early to everything, and being late stresses me out. Especially now that I'm hyper-conscious of my blood pressure, I'd just like to avoid unnecessary anxiety!

Anyway, today's appointment was just for Lupron, so it was a quick 15-minute visit. 

My infusion nurse asked how my cardiology appointment went. I said I was given the green light to continue with Herceptin. I also mentioned how the appointment made me aware of how every part of my health, including my cholesterol and blood pressure, might have a connection to my cancer treatment. There wasn't much for her to say, though she gave me a few words of support, reminding me that no matter how "normal" going to the Cancer Center may seem to me now, it's still a stressful thing to have to do, on top of the pandemic, so basically I shouldn't be too hard on myself, that these developments are understandable in my situation. 

5/17/20: Maybe Herceptin is Causing Carpal Tunnel Syndrome?

I'm still pushing through with side effects. It's been very frustrating and discouraging, but today, in one of the Facebook support pages, I came across a post that tied carpal tunnel syndrome to Herceptin.

This wasn't a connection I made before, even though "numbness or tingling in the hands, feet" is listed as a side effect for Herceptin. (I do also sometimes feel tingling in my toes, particularly when lying down on my back or sitting in a reclined position.) I think I didn't associate the numbness and tingling with Herceptin because those side effects started over 3 months after I started Herceptin, but it's only now that I've realized that the timing coincided with when I started the larger, 3-week dose of Herceptin! How did I miss that!?

Wearing wrist braces to sleep seems to be an effective piece of managing my symptoms, so it feels more and more like carpal tunnel syndrome is part of what's going on.

None of the formal-looking lists I found for Herceptin side effects named carpal tunnel syndrome specifically, but a Google search returned a handful of less official-looking pages that linked the two. My oncologist did mention carpal tunnel at the appointment when I first reported the numbness and tingling in my hands, but she didn't suggest it was because of Herceptin. Maybe she made the connection in her head. I wondered at the time why I would suddenly have carpal tunnel syndrome.  

Anyway, it's remarkable how a bit of hope can change one's attitude. As if life during a global pandemic isn't hard enough, every day I spend a significant amount of mental and physical energy trying to manage my symptoms. It's disheartening to think about living with these symptoms forever, or for as long as I'm taking Lupron (which is presumably until I reach natural menopause, or decide to remove my ovaries, which would come with its own set of side effects). My numb and tingly hands may or may not be caused by Herceptin, but just having the hope that they might go away when my Herceptin treatments end helps me to stay positive and optimistic.

2/27/20: I Wore Wrist Braces to Sleep and Added a Nerve Glide Exercise

In one of the Facebook support groups, someone posted a question about chemo-induced peripheral neuropathy. In the thread, there was a comment from someone whose symptoms and medication history sounded very similar to mine. Like me, she couldn't figure out the cause. Honestly, it was a relief just to know someone else was going through something similar. Anyway, she said her PCP suggested a wrist brace, thinking it might be carpal tunnel syndrome. 

I suddenly remembered that my medical oncologist had made the same suggestion when I first reported my symptoms. At the time, the problem pointed more towards generic swelling and pinched nerves, so I basically forgot about the wrist brace idea. But now that the swelling is down, and I'm still getting symptoms, I figured the wrist brace was worth trying out. If it works, great! If it doesn't, maybe I can rule out carpal tunnel syndrome. 

I ordered 2 ComfyBrace wrist braces and have slept with them every night since Sunday.

Before the braces, I was waking up in the middle of the night with numb and tingly hands. Usually I can make my hands feel better just by rolling onto my side, a trick I figured out after I realized that lying on my back triggered symptoms. With the wrist braces, I don't think my hands feel quite so numb and tingly at night. It's a little hard to tell in the braces, but I think it's an improvement.

I still wake up in the mornings with the "tightness" in my fingers. But I think it's not as bad, and it's wearing off more quickly than before.

Over the last few days, my pinky and ring fingers have actually felt pretty normal, and it's mostly just my thumb, pointer, and middle fingers that feel numb. It's no longer limited to just the fingertips, though. I've been doing my nerve glides, but now that the numbness seems centered around my thumbs and first two fingers, maybe I should be exercising my radial nerve? The nerve glides my physical therapist gave me target the median and ulnar nerves, and since I won't be seeing my physical therapist for a while, I looked up some videos for radial nerve glides to add to my regimen.

I still get occasional mild tingling in both hands, especially when using them, but overall, after the morning "tightness" wears off, my right hand feels a lot better, almost normal. Symptoms in my left hand are worse, but both hands are definitely loads better than before.

2/7/20: Maintenance Herceptin #3 + Physical Therapy Appointment #18

Today I arrived just in time for my 10:30 appointment. The medical assistant took my vitals, then helped me get settled into a bay.

My infusion nurse came in shortly after and asked about my legs and hands. I told her my legs were the lesser issue of the two; they still feel tired and stiff, maybe even more so since starting the exemestane, but mostly they just make me feel like an old person. I'm doing additional leg stretches every day, but still, any time I get up to stand, it feels like I've been in one position for hours, even if it's only been a few minutes. 

Then I told her all about my hands, my observations and how I've been managing the symptoms. She said it sounded like the symptoms were "taking over my life", by which she meant, the symptoms aren't getting worse, they may even be getting better, but only because I'm following all these rules all day (e.g., sleeping in specific positions, doing my morning routine, limiting my arm and hand use to ward off the tingling). She said it sounded exhausting, and not sustainable, and we need to try to figure out how to address the root problem.

Around this time, my nurse stepped out to take a call from my medical oncologist. Not the new one, but my original one, who is still working at the Cancer Center through February. When she came back, she said my doctor wants to see me for an appointment, to try to get a handle on what's going on with my hands. I scheduled it for next week.

My medical oncologist also suggested a one-time dose of Lasix (general name furosemide), a pill that would make me pee a lot, to help eliminate excess fluid. The idea is, if my symptoms are from nerves being crowded because of swelling, let's see if reducing the swelling can improve the symptoms. It might also help me to figure out if the discomfort I feel when making fists, and a new pain I sometimes have in the joints of my thumbs, are from swelling or joint pain (a side effect of exemestane). I took the pill this afternoon, so we'll see how things feel tomorrow morning.

My nurse accessed my port around 11:00. She said she would draw blood to see if anything in my blood work could help explain the swelling, or at least rule things out.

I told her that I've been thinking about getting my port out after all. We're thinking of taking a trip later this summer, between my treatments, and I'm uneasy about travelling too far from my Cancer Center with a sort of open wound that is at risk of infection. She agreed that it would make sense to get the port out, maybe in April, giving me a couple months to heal before the summer. She counted out the number of remaining treatments for which I would need to get an IV in my arm, and she even put a tourniquet on my left arm to count the accessible veins. She said it would be "totally doable". (The IV would be limited to just my left arm, where I had 1 lymph node removed, to minimize the risk of lymphedema on my right side, where I had 5 lymph nodes removed.)

I started the Herceptin at 11:30, and finished around 12:00.

I went in for my physical therapy appointment around 12:30. She re-measured my arms and found that they are less swollen than they were last time, but still swollen compared to my original measurements.

She had some ideas for helping to alleviate the swelling in my hands, like kinesio taping and compression sleeves (even if I don't technically have lymphedema). We decided to first see how the Lasix works out, and also see if my doctor has any other ideas, but it was reassuring to know that there are a number of options still in the wings if we need them.

We talked a bit about how I'm not even sure if some of the discomfort in my hands could be from joint pain, rather than swelling. She did say that joint pain, as a side effect of exemestane, does commonly appear in fingers and thumbs.

She worked on my cording, which continues to improve. She'll be away next week, and I hope my cording won't get worse without the weekly massage. I'll have to be sure to keep up my stretching!

Finally, she had me do some exercises to try to isolate the source of some of the hand tingling. It didn't seem like she could make any clear conclusions, but she did give me one more exercise to do to help relieve tension along my spine.

All told, I think I spent almost an hour in physical therapy today. I left the Cancer Center around 1:30, so it was a 3-hour visit.

Oh, I wanted to mention. During my infusion, my nurse brought me a free gift. Quite frequently, the Cancer Center receives donations to give to cancer patients. People can be so nice! Today's gift was a toiletry/cosmetic bag filled with little useful items.

My posts are usually so focused on my medical journey that I guess I'd forgotten to post about these little gifts. This is actually the third free gift I've gotten. The other two were both like free sample kits from Beautycounter.

1/17/20: I Called My Social Worker

Since I didn't see my social worker during my visit to the Cancer Center today, I gave her a call this afternoon to thank her for calling me the other day.

It was a brief phone call, but even in that short amount of time, she helped me to feel supported.

She said she wasn't able to come by during my appointment time today, but she checked in with my infusion nurse, who told her about my dad being in active cancer treatment. She was very sympathetic about how many Big Things I am dealing with all at the same time.

I told her how not many people know the full extent of everything that's on my plate. I mean, first with the breast cancer, then with the loss of my mom, and now my father has cancer, too? It's just a bit much. Like how much more sympathy or support can I expect from people?

My social worker completely validated my feelings. Just hearing someone else say that they think I have a lot going on made me feel seen and understood. She said again that I can make an appointment with her to talk things through, if that's something I think might help. I appreciate that she was very careful to not insist on an appointment, but just wanted to remind me that that option exists. 

I told her that I am definitely aware that I need time to process everything. She, and others, have talked about how, sometimes, the hardest part of cancer treatment is when it's over. My last chemo was December 20, the last day of school before 2 weeks of school vacation, and I had been looking forward to having 2 weeks of low-key down time to focus on myself and how cancer and cancer treatment have affected me. Well, I didn't get the time that I expected, so I'm going to have to look ahead to set aside some time later. In the meantime, I just need to keep my head down, and take life one day at a time.

So I didn't schedule an appointment with her yet, but it helps just knowing that I have a kind of safety net; if I get to feeling overwhelmed, I know I can reach out to my social worker.

1/15/20: My Social Worker Called Me

My physical therapist told my social worker about my mom's passing, and my social worker called me today to offer her condolences. I missed the call, but she left a message.

Besides just really appreciating the fact that she reached out, I also appreciated how much she understood the big picture. She said she was sorry, she recognized that it was especially difficult because it happened over the holidays, and she expressed how challenging it must be to deal with the loss while going through my own cancer treatment. 

She doesn't even know about my father being in active treatment for prostate cancer.

She asked if I wanted to schedule an individual appointment, otherwise she might try to stop by to see me the next time I'm in the Cancer Center.

I am pretty phone averse, so I decided not to call her back just yet. I'll wait and see if she comes to visit me in the infusion room during my next appointment on Friday. If she doesn't, I'll give her a call.

1/6/20: The Cancer Center Sent Me a Card

People can be so kind. It's really encouraging.

I assume it was my physical therapist who sent the card, since she's the only person I told at the Cancer Center.

12/13/19: Chemo Cycle #11 of 12 + Social Worker Visit + Echocardiogram Report + (Almost 4 Months Post-DMX) Physical Therapy Appointment #10

Warning: This post contains a photo of my unhealed port incision.

I drove myself again today. It was totally fine.

At my 10:00 port access appointment, the port nurse wasn't happy with the look of my port incision. It's not infected, which is always the primary concern, but it's definitely not closed. I don't know if it looks "better" than before, but maybe the stitches stimulated the skin layer to regenerate and start filling in the gap? I hope so. I just want it to heal, even if it heals into an ugly scar.

11 weeks after port placement.
1 week after stitches removed.
Entire incision not closed.
Using A&D ointment lightly.

I stopped by the restroom on my way to the infusion room, and by the time I saw my infusion nurse, the port nurse had already called her to talk about my port incision. It's not really in the wheelhouse of either nurse to know how best to handle an unhealed surgical incision, so my infusion nurse said she'd take another photo and send it to the doctor who stitched me up. She said at this point, maybe it would be helpful to have more information, like whether or not the scar could be "cleaned up" during the port removal surgery, and whether or not a plastic surgeon should be involved.

She confirmed that next week will be my last chemo session. Yay! I'm due for a Lupron shot the week after on December 27. She said I'll have one more weekly Herceptin at that same appointment, then starting from that date, I'll have maintenance Herceptin every 3 weeks. I'm still not clear on exactly how many maintenance Herceptin treatments I'll get, but she did say I'll get them until October 2020, one year from when I started Herceptin.

My nurse said I should expect the chemo side effects to linger for a few weeks, but once they go away, getting the maintenance Herceptin should be a lot easier. Almost all the side effects I've had are related to the chemo drug, Taxol. With only Herceptin, the only real concern is my heart function, which is monitored periodically with echocardiograms.

I mentioned that the neuropathy was more frequent than usual this week, but my infusion nurse said it wasn't a problem unless the neuropathy interferes with my ability to do regular activities, like walk or write. I didn't realize neuropathy could be so severe; it was a reminder of how lucky I am to have only mild neuropathy that's not disruptive to my quality of life. All I get is tingly toes that last a short while.

I started my pre-meds around 10:40. At 11:00 I started Herceptin, and my social worker came in shortly after for a brief visit.

We debriefed on Thanksgiving, and I told her how I've decided that for me personally, I would much prefer that other people say something rather than nothing. I get that some people don't say anything out of fear of saying something wrong, but ignoring the elephant in the room feels awkward to me, and honestly, it makes me feel like they don't care. In some cases, other people might not know if I'm the type of person who is okay with talking about cancer, but I would think that at least the people who know about this public blog would see it as an indicator that yes, I am comfortable talking about it. My social worker suggested I come up with a few lines I could say in case the other person doesn't say anything; something to acknowledge the elephant, show that it's okay to mention it, and either invite them to ask me questions if I feel like talking about it, or change the subject if I don't.

Preferably, though, it would be nice if the "burden" wasn't on me to break the ice. My infusion nurse actually said something before similar to what my social worker suggested, though she was addressing the question of what other people might say. She said ideally, in just a few lines, other people could acknowledge the cancer in some way (e.g., refer to the diagnosis, recent surgery, or current treatment), show love (e.g., give a hug, or say something supportive), and then move on (e.g., make a light comment that could potentially re-direct the conversation, which gives me an opening if I don't want to talk about it). I like those guidelines. I like that in both cases, whether it's me or the other person speaking, the elephant is acknowledged, and then you can play it by ear regarding whether or not to talk more about the cancer.

My social worker pointed out that the bottom line is that it's complicated. I get that. A person having cancer complicates relationships, and it's new territory for most people. I have to say, it makes sense that some of my most comforting and supportive interactions have come from people who have already had some kind of personal experience with cancer.

Before she left, my social worker asked if I've given any thought to requesting support from the Ellie Fund, since all requests need to go through her. I actually think I'm doing alright, but still, it's nice to know that kind of support is out there.

I ate my lunch during the Taxol, which started around 11:40. An hour later, my infusion nurse de-accessed my port, took a photo of my port incision, and gave me some printouts.

I am just realizing now that I forgot to post about my first echocardiogram report. I accessed it via the online patient portal a few days after the procedure. When my infusion nurse mentioned that my latest echo looked good, I asked for a copy of the report. I don't understand any of it, but I know the most important thing is the "ejection fraction". The report states that "normal" range is 54-73%. In my first echo, my ejection fraction was 63%. In my second echo, the ejection fraction was 61%. From what I've gathered in Facebook support groups, it's normal for the percentage to go down while getting Herceptin, just not too much. I assume I'm doing fine since my percentage only went down a little, and it's still in normal range.

My infusion nurse also gave me my blood work results. Today's report probably had the most measurements out of range, but almost all were only very, very slightly out of range. TotProt (Total Protein), Globulin, and Monos (Monocyte) were all very slightly low, similar to numbers in Cycle #7. Baso (Basophil) was slightly high, as it was in Cycle #6. And Im Gran (Immature Granulyte) continues to be a little high, as it has been in every cycle since Cycle #6. The only new one was RDWSD (Red blood cell Distribution Width Standard Deviation). This value is a measurement of red blood cell size, and my number was very slightly out of range on the high side. Apparently, the RDWSD value is typically compared to the MCV (Mean Corpuscular Volume), the average size of red blood cells, which was normal for me. High RDWSD and normal MCV could be an early sign of some kind of vitamin B12, folic acid, or iron deficiency. I'm figuring all these slightly out of range numbers might have something to do with the effects of chemo being cumulative. Good thing I'm almost finished.

I left the infusion room at 12:45, but I still had a physical therapy appointment at 1:00, which took place in the physical therapist's exam room. She worked on my cording while we chatted about the upcoming holidays. My right arm really feels a lot better after the cording massage!

I left the Cancer Center at 1:30, so altogether this visit was 3.5 hours.

11/24/19: This Bible Verse Resonated with Me

In one of the Facebook support groups, someone posted this Bible verse. It's exactly what I needed to hear, at just this time.

Losing my hair totally sucks. It's traumatic and distressing.

If I take this Bible verse literally, I can only hope that if the chemotherapy is killing my hair follicles, laying waste to my outward appearance, then it's killing the cancer cells, too, inwardly renewing my health.

11/22/19: Chemo Cycle #8 of 12 + Medical Oncologist Appointment + Social Worker Visit

Today my cousin drove me to my treatment. She brought her laptop and worked remotely while I was in my appointments, and the rest of the time we had plenty to chat about. Really, so funny that the time spent getting chemo for cancer can be spent in such an enjoyable way with good company!

We budgeted for traffic, and still arrived a bit early for my 8:15 port access appointment. The port nurse noticed the irritated skin around my port right away. She expressed frustration because the port should have healed long ago; I shouldn't need to be using dressings with adhesives this far out, and for so long. She said the incision doesn't look infected, so she recommended I stop using the antibiotic ointment, and leave the incision uncovered for a while. I should just be sure to regularly wash it with soap and water.

My appointment with the medical oncologist wasn't until 9:00, so we had a bit of a wait. When the medical assistant took my vitals, she skipped height and oxygen. (Every other time until today, they've always measured height, weight, blood pressure, oxygen, and temperature.) I asked why, and she just said it wasn't necessary to take those measurements every week.

I love when my medical oncologist hugs me hello and goodbye! When she asked about my recent side effects, I told her about the hair loss, and she was careful to validate my feelings. She reassured me that everything I'm feeling is normal; in fact, the timing is in line with the progression of emotions experienced by other patients, too. She asked if I was interested in a wig, and I said no. I was surprised myself that I didn't take longer to hem and haw, or ask for a prescription just in case. I think in an effort to make me feel better about my response, she talked about how wigs are not always the be-all and end-all solution they are sometimes made out to be, because some people find them hot or uncomfortable or itchy, and sometimes they cause a rash on the scalp. She also mentioned the possibility of shaving my head, but I am just not feeling that option, either.

Regarding my port incision, she agreed with the port nurse that there is an unusually high number of port incisions that haven't been healing properly. She said the appropriate people are being informed, and hopefully they will figure out what is going on. I hope they get everything resolved before I get my port removed, so I won't have so much trouble with the incision healing from that surgery! (I won't get my port out for almost another year, so they have time.)

During the physical exam, I mentioned that my belly feels flabbier. I haven't had a flat tummy since having kids, so I'm used to a little belly fat, and it's not that it's getting bigger, it's just flabbier, not as firm. I know weight gain is a side effect of Lupron (because weight gain is a side effect of the menopause that the Lupron causes), so I was surprised when the doctor said the flabbiness was probably from the steroid pre-med. She said it's temporary while taking the Decadron. I hope she's right!

We got to my bay around 9:45, and I started my pre-meds around 10:00.

About 10:30, my social worker came in, and my cousin stepped out. The social worker wanted to follow up on our conversation last week about hair loss. I told her how I found her words last week very helpful. We talked some more about how visible hair loss is as a side effect uniquely associated with cancer patients, and how even efforts to hide the hair loss (like with a wig or hats) are themselves visible, so it's the one side effect that just can't be masked.

She specifically asked how Ken and the kids are doing. I said I think the kids are doing remarkably well, but maybe Ken could use a bit more support. I know he appreciates having work as a way to compartmentalize, but being a caregiver is a huge weight to carry, and also a role that is often overlooked. The infusion nurse was in the bay at this time, having just started my Herceptin, and she suggested I help brainstorm friends he could go out with. Even if they don't talk about feelings, it would be good for him to get a break.

The social worker also asked me about Thanksgiving coming up next week. It'll be my first time seeing many family members since starting chemo. I'm not exactly anxious, but there's uncertainty in how I will feel. Finally, she encouraged me again to attend the in-person support group, perhaps when my weekly chemo ends. The group meets at an inconvenient time for me, but I agreed it might be more doable when I'm not getting treatment quite so often.

I started Taxol around 11:00, and finished up just around 12:00.

When the infusion nurse de-accessed my port, she took a photo of the incision to show her colleague who specializes in port care. (This person calls herself the "Port Authority"!! Hahahaha. I love it.)

My nurse said it looks like the incision won't be closing up tightly, which I assume means a more visible scar. She said when I get my port out, I should tell the surgeon that sutures may work better than Dermabond skin glue to close the incision. But that's a much later conversation.

She also suggested using Aquafor on the irritated skin around my port. She gave me a couple large gauze pads to place over the area, to keep the ointment from getting on my clothes. She figured the pads are large enough that maybe they will stay in place just being tucked under my camisole, without using any adhesives.

Finally, she gave me my blood work. Two values were out of range. Im Gran (Immature Granuloyctes) continues to be a little high, a little higher than last week. And AbsLymp (Absolute Lymphocyte) was a little low, which I saw before in Cycle #6.

All told, this visit was about 4 hours. We did order lunch, but finished and left before it was delivered! We decided to eat at a local restaurant nearby. It was nice spending the time together, even if it was precipitated by chemo!

11/19/19: A Community Member Died of Breast Cancer

Today I got news that a former teacher in our school district has died of breast cancer. I did not know her. She was first diagnosed 9 years ago with early stage breast cancer. She underwent surgery and chemotherapy, but had a metastatic recurrence about 5 years later. She is the second person in my community (that I know of) to die of breast cancer in as many years.

Two years ago, a mother of children in my kids' elementary school died at age 43, the same age I am now. I did not know her, either. I do know many people who knew her well, and I heard only that she had a very aggressive form of breast cancer.

Generally speaking, 5-year relative survival rates for breast cancer are very encouraging; on average, the 5-year relative survival rate is 90%. Farther out, the 10-year relative survival rate drops to 83%. My cancer was localized, so the statistics look especially good for me. But the fact is, statistics aren't predictions; they only give an idea of possibilities.

(Frankly, any of us could get hit by a bus at any time, so there's that perspective to keep in mind, too...)

While I appreciate optimism - indeed, having a positive attitude is essential to good health and recovery - I also think it's important to be realistic. The way some people responded to my diagnosis, it's like they thought it was No Big Deal because breast cancer has such an encouraging survival rate. But cancer is cancer, and there is no cure for breast cancer.

I know it can be difficult to figure out what to say to someone with cancer, and I know everyone means well, but these kinds of comments I do not find to be helpful:

"I know 2 other women who had breast cancer and beat it. You will, too!"

"Breast cancer is very treatable now, there are lots of new therapies. You will be fine!"

"This is just a temporary phase of your life. You will go through treatment and come out stronger!"

While it is inspiring to hear about women who are thriving after breast cancer, the truth is, there are different kinds of breast cancer, different stages and different grades. Each patient lives a unique life, with different habits of exercise and nutrition, and their own genetic history. My cancer and my prognosis can't be compared to anyone else's story based solely on the fact that we both had "breast cancer".

There is no way to know if I will ever have a recurrence, so reassuring me that I won't does not help. In fact, it minimizes the fear and anxiety of living with a constant threat of recurrence.

I think more compassionate comments might sound like:

"I know a few other women who have been through breast cancer. I don't know how their diagnoses compare to yours, but would you be interested in talking with them?"

"I'm so sorry you are going through this. It's a hard path, and it sounds like some days are a real struggle. Do you want to vent? I'm here to listen."

"I know I can't really understand what you're going through. I'm cheering for you, and I'm proud of you for facing the challenges of each day. I hope it gets better soon."

11/22/19 Update: A couple days after I posted this entry, a friend on Facebook posted this related article, which speaks to the difference between the two types of comments above.

Therapist Explains the Important Difference Between Support and "Toxic Positivity" in One Simple Chart 

(Book Review) Dear Friend: Letters of Encouragement, Humor, and Love for Women with Breast Cancer by Gina L. Mulligan

I received this book in the mail from a friend. It's the perfect gift to encourage and support someone living with breast cancer, especially if they are newly diagnosed or currently undergoing active treatment. It's not really a book in the traditional sense, so it was hard to rate, but I gave it 4 stars on Goodreads. 

A lovely collection of short letters to encourage and support women who have breast cancer. (Though men can and do get breast cancer, many of the letters assume the reader is a woman, as the book's subtitle indicates.)

A friend gave me this book when I was undergoing chemotherapy for breast cancer, and it was just what I needed to feel supported. It makes a perfect gift.

Most of the letters are written by women, some of whom are fellow survivors. There are a few letters here and there from men and children. I was impressed to find that letters from teenagers showed remarkable wisdom. In my reading, for every letter that did not quite resonate with me, there was at least one other that said exactly the words I needed to hear/read.

It's probably best not to read this book cover-to-cover in one sitting; instead, keep it nearby and pick it up whenever you need a little comfort.  

Overall extremely uplifting, but with a twinge of bittersweetness with the realization that complete strangers were able to provide more meaningful support than some of my own friends and family. Then again, these letters must have been carefully curated out of thousands to include only the most powerful and heartfelt words.

It's worth noting that all the letters in this book are printed as they were originally handwritten. I loved the beautiful pages of colorful stationery and doodles, and I enjoyed each letter-writer's unique penmanship. It occurs to me that maybe a younger generation of survivors might not appreciate the handwriting as much, since many schools no longer teach cursive.

11/1/19: Chemo Cycle #5 of 12 + Lupron + (10 Weeks Post-DMX) Physical Therapy Appointment #6

Today another friend drove me to my treatment. We have a lot of shared interests, so there was plenty to talk about! Again, it was a really pleasant way to pass the time, catching up with a friend. Just so funny that it's chemo that helped enable it.

My appointment was earlier than usual, so we budgeted extra time for traffic. The drive did take longer than usual, but we still arrived early. My port nurse called me in early at 9:00, but then we had a bit of a wait in the infusion room. 

After getting my vitals measured, we were shown to a bay around 9:30, the time of my appointment. My usual nurse, with whom I had the appointment, was out, so I had a different infusion nurse for the first time. 

I asked if there are any objective means to determine when I'm able to drive myself to treatments? Or if it's just a matter of me "feeling" like I can do it? She basically said it depends on whether or not I am still experiencing any side effects of Benadryl by the time I go home. I mentioned the weak arms I get after taking the pre-med pills. I think they're fine after a couple hours, but I'll pay more attention over the next couple weeks, when Ken will be driving me. I'll try to imagine if I would be okay driving myself. And I'll ask my usual nurse this question, too, to get her opinion.

I also told the nurse about my hair falling out. My friend said she couldn't tell my hair had thinned, so that was reassuring. The nurse gave me some suggestions on how to manage hair loss (e.g., put a towel on my pillow to help collect hairs that fall out while sleeping, consider cutting my hair short), and then also reminded me that it's entirely up to me to do what feels best for me. She had a gentle, compassionate way about her, and she ended her sentences with a friendly, supportive (not sympathetic) smile, and an occasional pat on my arm. 

I started my pre-meds around 10:00, same regimen as before.

At 10:30, while I was still getting the Pepcid via my port, my physical therapist came in, and my friend returned to the waiting area. The physical therapist worked on my cording, and said she felt a few "snap". She seems to think the cording may subside in a few weeks. 

I told her I hadn't really done much massaging of my scar tissue, as she instructed, because it feels weird. She said there's no rush to do that massaging now, I can wait until it's healed some more. She mentioned that if I wanted, I could pick up physical therapy again after chemo ends, and she could work on the scar tissue for me, and help me with stretching my chest muscles even more, beyond range of motion exercises. 

About 10:50, during my physical therapy, the infusion nurse came in and started my Herceptin.

Started Taxol at 11:30, and started to wonder if we'd get our lunches before I was finished. I have to say, I really enjoy their chocolate chip cookies! 

We did get our lunches, and my friend was able to eat hers when she stepped out to the waiting area again while I got my Lupron shot. That was around 12:45, and we packed up and left just before 1:00. I carried my lunch out and ate it at home.

Today's visit was about 4 hours, not including driving time.

10/25/19: Chemo Cycle #4 of 12 + (9 Weeks Post-DMX) Physical Therapy Appointment #5 + A Stitch is Poking Out

Last night I discovered a little pokey thing sticking out of one of my incisions! It's tiny, I can't actually see it, but it feels like a tiny fishing wire. Thanks to some helpful posts I saw in Facebook support groups, I suspected it was a stitch sticking out, but wasn't sure what to do about it. I called the Breast Center this morning, but no one answered. I left a message, and told them I'd be in the Cancer Center later today.

Today was the first time a friend drove me to chemo instead of Ken. Ken is able to take off as much time as he needs, but practically speaking, it's difficult to juggle his lesson planning if he misses too many classes. I'm still hopeful that I may be able to drive myself eventually, but in the meantime, it's super helpful to have friends who have offered to drive.

I am pretty bad at asking for help. I just don't like inconveniencing other people. And this is a big inconvenience, potentially taking several hours. But as my infusion nurse pointed out today, if it's something I would do for someone else, then it's okay to let someone else do the same for me.

The friend who drove me today is one of my dearest friends. It was actually really fun spending the day with her. I mean, I would call it a pleasant way to pass the time, if only I wasn't getting cancer treatment at the same time. Hahahaha.

Ideally, my appointment in the infusion room would be 15 minutes after my port access appointment, so I can go directly from one appointment to the other without delay. That has pretty much been the case up until today. Today my 1:00 PM infusion appointment was 45 minutes after my 12:15 PM port access appointment, and all 10 infusion bays were occupied when we arrived. There's a small waiting area, and we had plenty of time to chat! We were given menus to order our lunches while we waited.

Also, my infusion nurse used this time to ask me about my side effects, so we could jump right to the meds when I got to my bay. I said I seem to always feel fine on Saturdays (day 2), and she said that's because of the Decadron steroid; it takes a few days to wear off.

I told her about the blood in my stuffy/runny nose, and she said that was not surprising if my platelet count goes low. (My platelet count has been on the low side, but still in the normal range.) If my nose feels irritated or dry, she said it might help to put a humidifer in my bedroom.

I also told her about the tiny pokey thing. She said it's probably a stitch, and she would consult with another nurse who previously worked in the Breast Center.

Once I got assigned to a bay, I started the pre-meds around 1:30. The regimen was the same as last time.

I got Herceptin starting at 1:45, then Taxol starting at 2:15.

During the Taxol, my physical therapist came in, and my friend stepped out and went back to the waiting area. The physical therapist worked on my cording while talking to me about ways to manage my tiredness. She referred to cancer-related fatigue and emphasized the importance of getting my heart rate up. Like if I take a nap during the day, I should get my heart rate up for a few minutes afterwards; I could go up and down the stairs a few times, or even just swing my arms around for a while. She reminded me that my walking should be "moderate" exercise, a brisk pace while still being able to carry on a conversation; it's all about the heart rate.

She also said I can start massaging my incisions to help break up the scar tissue, which can help make scars less noticeable. At this point, most (but not all) of the surgical glue and scabbing have come off, exposing the pink scars underneath. She showed me how to very gently massage my scars, basically the "vertical" and "circle" methods described in this "Managing Your Scar" document from the Moffitt Cancer Center that I found online. But my physical therapist said not to use lotion while massaging for now because it's important to maintain the friction between my fingers and the scar. I didn't think to ask if I should use any lotions otherwise.

Finally, I asked the physical therapist about the pokey thing in my incision. She didn't look at it, but she said it sounded just like a stitch. She said she's seen it a few times, and the first time she encountered it, she was advised by a nurse to recommend applying triple antibiotic ointment (besides preventing infection, it helps to soften the stitch), and covering it with a band-aid to keep the ointment in place.

I finished the Taxol at 3:15. The infusion nurse gave me my blood work report (nothing remarkable this time), and also took a look at my pokey thing. She confirmed it's a dissolveable stitch, and the other nurse who had worked in the Breast Center had advised her to snip it as close to the skin as possible! It was really tiny. She did the best she could, and now I can only feel the stitch if I run my finger over it in one particular direction. She said to use the triple antibiotic ointment and band-aid at night when sleeping.

We left around 3:30, so today's appointments were about 3 1/2 hours total, not including driving time.

10/18/19: Chemo Cycle #3 of 12 + Medical Oncologist Appointment + Social Worker Visit + (8 Weeks Post-DMX) Physical Therapy Appointment #4

This post is going to be a long one. I had kind of a packed schedule today.

Ken dropped me off at the Cancer Center at 12:30, went back to teach one class, then returned and joined me in my bay in the infusion room.

Port Access

When I get my port accessed, the port nurse starts by laying out all the necessary supplies. She usually sets out 3 packets of Betadine, the antiseptic she uses instead of the usual chlorhexidine, to which I seem to have an allergy. Chlorhexidine is now listed on my medical record, and I get a special orange band every time I check in to indicate that I have an allergy.

But today, as the port nurse was finishing up her preparations, I noticed she hadn't put out the Betadine. In previous appointments, she's told me very openly that I should feel free to remind her that I "need the brown stuff". At first I wondered if maybe she'd always remember, since she helped diagnose my allergy in the first place! But I know she sees scores of patients every week, so I don't hold it against her that she forgot, or didn't see the orange bracelet. (I was wearing a long sleeve sweater that may have hid the bracelet. I'll try to be more diligent about keeping my medical bracelets visible!) Anyway, I spoke up, and the port nurse thanked me for reminding her. Everything was fine, but it was a clear example of how I need to be fully engaged in my own medical care!

Medical Oncologist Appointment

After my port was accessed, a medical assistant took my vitals. My medical oncologist was running late by 20 minutes, but she was as warm and attentive as always when I saw her. I love that she's a hugger! Besides going over all the medical stuff, she gave me lots of encouragement and words of support.

One thing I mentioned is that when I was given a printed list of my medications to confirm, it listed docetaxel (Taxotere) instead of paclitaxel (Taxol). It looked like it was added by my OB/GYN. Somehow she entered the wrong drug, so my oncologist just deleted it. Said she doesn't like to list chemo drugs on prescription lists anyway. Again, another reminder for me to be vigilant in every part of my medical care!

The oncologist wanted to know all about my side effects. I reported that the continued sporadic, dry cough is not as bad as the first week, and I don't consider it bothersome. She was a bit concerned; I think she is on hyper alert for anything that might indicate a possible infection. She wants me to take loratadine (brand name Claritin) daily to see if that helps. Interestingly, even though it's an over-the-counter medication, she submitted a prescription to my pharmacy; she said if they can provide a generic pill, it might be cheaper than what is available on the shelves. I really appreciate how she took this step to try to address my out-of-pocket costs.

I also told her about not being able to focus my eyes on Monday. She said it does sound like a sensitivity to sunlight, which is expected on Taxol but not usually a big issue. Everybody is different, and this is just how my body is responding. In fact, now that I think about it, it's not that surprising because I do think I have sensitive eyes; I tend to squint a lot if I'm not wearing sunglasses, and my night vision is pretty poor. The oncologist said I should be careful even on cloudy days, because it's the UV light that's problematic. I should also wear long sleeves and pants when going outside; I know for sure I already have a sun sensitivity that appears as a rough, red, itchy rash on my forearms, and I'm not interested in finding out how it reacts to sunlight while on chemo!

Very interestingly, my oncologist pointed out that pretty much all the medical studies and clinical trials for chemotherapy drugs, including their dosing and side effects, have generally involved predominantly white women, and in her practice, she has noticed that her patients of Asian descent tend to respond differently than white patients! So that might be a factor in why I'm experiencing less common side effects. In fact, she said her Asian patients tend to have a harder time with chemo in general, so she was pleased that I'm doing relatively well so far.

She confirmed that she didn't want to give me the flu shot last week because of the cough, but since the cough seems mild, she would order a flu shot for today. With chemo compromising my immune system, I definitely don't want to get the flu!

Finally, she did a physical exam. She listened to my lungs and heart, and she looked at my port and surgery incisions to make sure they are healing well.

Social Worker Visit

I got to the infusion room late for my appointment, but they knew I was meeting with my medical oncologist. I got settled in my bay, and while waiting for my infusion nurse, my social worker came in for a visit.

She asked how each of us are doing - me, Ken, and the kids - and we talked about expectations regarding the level of support I might be receiving from friends and family. I told her how this is the first week I've had since surgery that I wasn't completely focused on recovery or overwhelmed with doctor appointments all week. It's like I am finally popping up for air, and now we can hopefully start to settle into a kind of routine, even if it does include Friday chemo appointments. I mentioned my blog and how it's kind of therapeutic for me; she was very supportive and encouraged me to keep it up.

She also told me about an amazing organization called the Ellie Fund, which provides support services for breast cancer patients in active treatment. Incidentally, a couple friends have told me about Cleaning for a Reason, an organization that provides free house-cleaning services to women undergoing treatment for any cancer. I appreciate these organizations so much! Right now I feel like we are in good shape, but it's great to know these options exist.

Chemotherapy + Targeted Therapy

Soon after the social worker arrived, my infusion nurse got me started on my pre-meds. This time, I had the same dose of Benadryl as last week, but I got it via a pill. The nurse said the side effects should be less pronounced when taking the medication orally rather than via the port. My Decadron dose was also the same as last time, and I again took it orally via 3 pills. Pepcid was the only pre-med that was administered via the port.

I started Herceptin at 2:30, and then started Taxol at 3:00.

Some time during the infusions, I noticed my arms started to feel kind of weak, like it was an effort to hold them up. This happened in previous visits, too, but what with feeling loopy from the Benadryl, I sort of wondered if maybe I was imagining it. Anyway, turns out, muscle weakness can be a side effect of both Benadryl and Decadron. The feeling was temporary, and my arms felt mostly fine by the time we left.

I also continued to experience a bit of loopiness and drowsiness, which I think is typical for Benadryl, so it's good Ken is still driving me for now. I'm still hopeful that maybe I'll get used to all the drugs so I can drive myself at some point; it would just be so much more convenient.

Physical Therapy Appointment #4

Soon after I started the Herceptin, the physical therapist came by. She closed the curtain for my bay and asked me how things were going.

I told her how pleased I've been with the improvement of my range of motion. She wasn't able to take any measurements with me in the infusion chair, but it's definitely something I can easily describe, even if we can't quantify it with numbers. She thinks maybe next week she'll give me new exercises since some of the current ones might be too easy now.

She spent most of the time working on the cording in my right underarm. I could definitely feel some discomfort as she massaged the areas, including the new length of cord in my upper arm. She said she will schedule herself to come during my infusions on Fridays to work on the cording. (I checked the online patient portal, and she already scheduled next week's session. Yay!)

Ken arrived during the physical therapy visit. He saw the curtain was closed, so he waited in a nearby waiting area. He met the physical therapist as she was leaving. I knew Ken was driving back and forth and teaching during his usual lunch period, so he was glad that I had ordered him a lunch! (The medical assistant who brought me to my bay asked if I was alone today, and when I told her Ken would be arriving late, she thoughtfully suggested I still order food for him!)

Flu Shot

At 4:00, the infusion nurse de-accessed my port.

I mentioned that I thought the medical oncologist had said I should get a flu shot today. The nurse checked the computer system. Turned out, we had to wait for the oncologist to put in the order, and also for the pharmacy to send up the shot. Once again, I had to take responsibility for my own health care!

I got the shot just before 4:30, and we headed home. All told, today's visit was 4 hours.

Blood Work

This week's blood work showed a decrease in my white blood cell count outside the normal range. Chemotherapy works by killing cells that divide quickly, which includes not only cancer cells, but also the fast-growing cells of hair (resulting in hair loss), the digestive track (resulting in nausea), and bone marrow, where blood cells are made. The white blood cell count is expected to decrease below the normal range, and then level off. My infusion nurse said they don't worry when the count simply dips below the range; instead, they look to see if the count levels off and then suddenly dips again, or if it continues to dip without leveling off.

Since my white blood cell count is lower than normal, even if it's not yet concerning, it does mean I have an increased risk for infection, so I need to be careful not to injure myself or get sick! In the TMI department, I'll mention that I'm not shaving during chemo because I don't want to risk nicking myself by accident with the razor. 

10/4/19: Chemo Cycle #1 of 12 + Lupron + Social Worker Visit

Warning: This post contains photos of my accessed port.

The actual process of receiving chemotherapy turned out to be pretty uneventful. That's good, because it means I didn't have any kind of allergic reaction to any of the drugs today. Ken came and stayed with me the whole time. He got a lot of grading done.

My physical therapist did not pop in, but the social worker did.

When we arrived at the Cancer Center, the familiar face at the reception desk recognized me and checked me in without asking my name. On the one hand, it's a little depressing that I am there so often that she knows who I am; but on the other hand, it definitely makes for a much more warm and welcoming experience.

I had a 10:30 appointment with the port nurse. She accessed my port in preparation for chemo, but did not draw blood today because she said they got all the lab work done yesterday. I had put the numbing cream on a little over an hour earlier, and it again worked like a charm; I didn't feel a thing when she inserted the needle. I'm a little curious to know how much it might hurt without the numbing cream, but the area is still bruised, and I guess that's not something I really need to find out. Haha.

We went upstairs to the infusion room. A medical assistant took my vitals (height, weight, blood pressure, oxygen, and temperature), gave me a tour of the facilities (there's a cabinet with warmed blankets, and a small kitchen with snacks and drinks and water), and brought me to my "bay" (a private curtained off area with infusion equipment, a recliner for me, two simpler chairs for company, and a TV).

Looking around, at first I thought I might be the youngest patient by a couple decades. But then I saw a young woman, maybe in her 20s, with an older couple I assume were her parents. It wasn't clear at first who the patient was, but later on I saw the couple sitting in guest chairs.

Around 11:00 my infusion nurse came in. The same nurse is listed on all my upcoming appointments that are already scheduled, but I don't think it's guaranteed that I'll always get the same nurse for future appointments. She was friendly and knowledgeable, maybe with a kind of business-like way about her. I wonder if sometimes, having that kind of demeanor is a conscious decision for someone who works with cancer patients all day.

We started with the pre-medications that the oncology nurse had told me about. First I took 2 Tylenol by mouth (to ward off fever), and then the infusion nurse delivered the pre-meds one by one via IV through the port. First the steroid (name brand Decadron), then the Benadryl, then the Pepcid.

Around 11:40, after I had just finished the Benadryl, the social worker came by. The infusion nurse told her my Benadryl was about to kick in, so I might be kind of out of it, but she knew I hadn't had any contact with the social worker yet, so it was still a good idea for us to meet when she had the time.

I'm glad the infusion nurse had given the social worker the heads up, because not 5 minutes into our conversation, I realized I was focusing really hard to understand what she was saying. When I opened my mouth to answer a question, I was surprised at how quiet my own voice was, and how slow my words were coming out! I felt kind of loopy, and it took a lot of effort to talk and stay awake. I am sure that if she hadn't been there talking to me, I would have fallen asleep!

Anyway, she was really nice, and she gave me information about a breast cancer support group that meets at the Cancer Center. I know that at least half a dozen friends of mine have mothers who had/have breast cancer, but I don't personally know anyone my age who has been diagnosed. I'd be interested in seeing if there are any women around my age in the support group, but the meeting times are actually pretty inconvenient for me, so I'll have to see if I can make it work.

We spent most of the time talking about how to talk to our kids about my cancer. She gave us some helpful resources, including a book list which might work well for our kids, since they are both avid readers. One really important piece of advice she gave us is to not assume that our kids are fine just because they aren't talking about it with us. We should make a point to check in with them at a time when they feel safe and comfortable, and give them opportunities to ask questions, so they know it's okay to talk about it.

Towards the end of the social worker's visit, just before 12:00, the last pre-med finished, and they started the Herceptin. This is the targeted therapy that they deliver in 90 minutes the first time to make sure it's well-tolerated. Since it went well today, in future visits they may be able to decrease the delivery time to 30 minutes.

After the Herceptin I got the Taxol, which takes 60 minutes to deliver. When the infusion nurse handled the Taxol, besides just putting on gloves, she also put on a protective gown, a precautionary measure because topical exposure is harmful. It seemed kind of funny because, gee, I'm getting that toxic drug pumped directly into my veins!

All this time, I was diligent about my water intake. One of the informational handouts I received on chemotherapy said to drink 2 to 3 quarts of water every day. That's a lot of water! I met the goal today, but it did mean having to pee a lot. I literally had to pee like every half an hour. The IV system can run on battery power, so I just walked the IV pole into the bathroom with me. I know this is no time to feel self-conscious, but I felt self-conscious wondering if everyone who could see me thought it was amusing or weird how frequently I was using the bathroom. Haha.

I should mention, too, that since we were in the infusion room during lunch hours, we both got free lunch! There was a menu from which we could order a soup or sandwich, fruit, chips, dessert, and a beverage. It was a nice perk.

I read a few pages of a book I brought, and nodded off here and there. A lot of the time I felt kind of foggy, so really couldn't do much but just sit and rest. I could hear people in other bays watching TV or talking with their support people. Maybe once I get used to the meds, I can use the time to read or play my online games, like Scrabble and Boggle and Candy Crush! They do have free wi-fi in the hospital.

The infusion nurse also said that if I handle the meds well, I might be able to drive myself to future treatments! That would be a huge help, if Ken doesn't have to take as much time off from work. Mostly they are worried about the Benadryl causing drowsiness, which would be dangerous if I drove myself. Today, I definitely felt out of it, and would not have been able to drive myself home safely. But if I handle the chemo drugs well, they might be able to reduce the pre-med doses, and I might be able to take some orally instead of through the port. We'll have to see how things go.

Around 2:30, the infusion nurse de-accessed my port.

The only thing left was to give me my Lupron injection, but we had to wait for it to get delivered from the pharmacy department. While we waited, the infusion nurse gave me my blood work report that I had requested, an informational handout about Lupron, a visit summary with future appointments, and a super helpful printout of guidance regarding when to use which medication, what to do if I develop particular symptoms, recommendations on how to maintain my health during chemo, and when to call the doctor.

The Lupron injection was just a quick shot in my butt. I'll be getting it every 4 weeks, and the infusion nurse said we would alternate which side to use for the shot.

We left the Cancer Center at 3:00. All told, it was almost exactly 4 1/2 hours, just as the oncology nurse had estimated.

So here's a photo of me in the infusion chair, next to my IV pole. And then a close-up of the accessed port, which is covered in protective dressing.

I might still post a photo of the bare port, if it ever calms down. Right now, the incision still looks raw, the area immediately surrounding the port is bruised, and the wider area is rashy with redness and bumps. I've taken photos for my own records, and they aren't pretty!

Back at home, the only thing I noticed is a bit of dry mouth, which I think is a side effect of the Taxol. That's just more reason to keep up with my water drinking!

Apparently a lot of chemo side effects tend to show up a day or two later, but the one that might come up on the day of treatment is that feeling of "being wired" due to the steroid pre-med. I wouldn't say I feel "wired" in a jittery way, but I am up at almost 11:00 PM on the day of treatment, so maybe that is something. (Though I am usually a night owl anyway.)

I was encouraged that the infusion nurse echoed the other oncology nurse and said that with my low dose of Taxol, the risk of nausea is low, especially because I did not get morning sickness when I was pregnant. She said women who had bad nausea during pregnancy tend to get nausea with chemo as well. I did get nausea, but not to the point of vomiting, and I seem to remember it being more like nausea triggered by specific smells and food, not necessarily like a stand-alone, all-present nausea. So I hope that counts for not being at a particularly high risk for nausea now, especially if I take care to stay hydrated, and am careful about what I eat.

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

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

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.