1/9/23: NP Appointment

Today's appointment was my annual check-in with the Breast Center.

I think it took all of 5 minutes! Maybe 8. Definitely not 10.

I was impressed, again, that my NP had read enough of my file to know that I had switched from Tamoxifen to anastrozole. We talked briefly about that, which led me to mention my oophorectomy in June, which she had not seen in my records, for whatever reason. She said she hadn't ever heard of Lupron not working, and I said my oncologist had given me the same impression, since she had called it "a little weird" and couldn't explain it. 

After going over everything that happened last year, she said she hoped everything else is going well. I said yes, other than getting covid over Christmas! I didn't expound upon my covid illness, I just said I'm better now, and optimistic that my medical situation might finally become stable.

She did a clinical breast exam, and said my double mastectomy scars are healing really well, specifically mentioning that the "dog ears" (the extra skin at the outer ends of each scar) look better, i.e., smaller. I said I do think my scars are less bumpy than before, especially around the dog ears, and she said that probably means there's less scar tissue. She asked if I massage the area, because that would help. I said I don't do it on purpose to help the scars, but my underarms still frequently feel numb and tingly and tight (particularly on the right side), so I do now have this funny habit of rubbing the area any time I'm just sitting around watching TV or using the computer. She joked how my kids are probably like, "Oh, that's just mom, rubbing her armpits again!" Haha. Apparently, though, all that rubbing is good for healing, so great!

I was relieved when she said everything looked fine. I wasn't anticipating any problems, but there's always that small part that is fearful of recurrence. 

She said I'll have one more appointment with her in a year, and then that'll be the end of my 5 years of post-diagnosis follow-ups! I honestly can't believe it's almost been 5 years... It sounds like a long time, but it feels too short because so much has happened and I can't believe my surveillance window is close to ending. Again, I didn't ask what happens after that; I suspect they will cut me loose, and I hope that by the time next year rolls around, I'll feel ready for that step.

Throughout the appointment, I think I spoke very matter-of-factly about everything, which perhaps gave the NP the impression that I accept and understand the whole of my situation. I think I do, and I never really considered that that might be unusual. I can't remember her words verbatim now, but the last thing she said to me was something like, "Well, you definitely have a good attitude, and that's, like, 99% of doing better." I'm assuming she used the "99%" number metaphorically, but I was immediately struck by how much that one sentence echoed the message in the book I just read!

9/24/22: (3 Years Post-DMX) Breast Surgery Scars

It's been over 3 years since my double mastectomy (DMX) surgery. After posting about my BSO scars, I figured I'd circle back and also post about my DMX scars.

To be honest, I don't spend much time worrying about my DMX scars because 1) they aren't visible to others, and 2) I have an "out of sight, out of mind" attitude about them, and I just don't look at them much. I mean, why would I want to? I still have zero regrets about going flat, and I have no interest in getting reconstruction, but I am not exactly happy to be flat. It's still a difficult reminder of having had cancer, and feels like a permanent loss, the cost of getting rid of that cancer. Three years later, and I'm still getting used to it. 

The most notable thing is that my dog ears (extra skin at the outer edges of both incisions, near the armpits) have gotten a lot smaller. They are not totally gone, but the puckering is minimal, and there is only a slight bulge. The flesh under the dog ears used to feel thick and hard, and I used to massage the area frequently. Now I think it must have been scar tissue, because even though I haven't massaged it in a while, the area feels soft, more like just regular skin.  

Around each armpit, there's a broad area - including back muscles behind the underarm, the dog ears, and muscles at the edge of my clavicle - that's still numb and tight. I'm always having to stretch my arms and massage the area, especially on the right side, which had more lymph nodes removed than the left.

I think the scars themselves look good, as far as scars go. The skin is flat and smooth, and the scars are kind of wobbly-looking horizontal lines, just a lighter color than the rest of my skin. Each scar is about 6 inches long and the width varies, but is generally like 1-3 mm. It's still tingly if I touch it. 

Apropos of nothing, but kind of interesting to me, each breast scar is about the same length as my C-section scar. But my C-section scar is dark, rather than light, and it's a very thin, straight line all the way across, no real width or wobbliness to it like my breast scars. 

7/4/22: (18 Days Post-BSO) I'm Okay

The giant bruise near the left incision continues to get noticeably better, which is reassuring. 

The left incision area, however, is still a little swollen and tender. I've been taking ibuprofen just to help with the inflammation, and I keep wondering when I should stop.

I've noticed "new" bruising below my bellybutton. It's not really new because my doctor saw the area was bruised at my incision check appointment, but at the time I couldn't really see it. Now it's in the stage where, as it gets better, the color has spread and changed to light purple, green, and yellow. 

The pubic bruise is still kind of a mystery to me. It hasn't changed very noticeably; maybe it looks lighter and less defined? It still doesn't hurt or feel swollen to me. 

I can walk almost normally now, but it still helps to support my left incision when going up and down stairs, and if I'm trying to walk at a completely normal pace. I've resumed most of my usual household activities (except daily cooking), but I also feel I need to properly rest after exerting myself. It's not clear to me if I should still be icing the swollen and bruised areas, but I'll do it every now and then when I'm in rest mode.

Incidentally, I'm getting hot flashes again. It's an interesting observation, suggesting that my body really did have a not insignificant amount of estrogen, so that removing that amount clearly made a difference. 

1/6/22: NP Appointment

Today I had my yearly follow-up with an NP in the Breast Center. 

A few weeks ago, checking my appointments online, I noticed that this appointment had been switched from my usual NP to a different one. Turns out, my old NP is on maternity leave! Yay for her! I love babies. Also, when she returns, she'll be working only at the main hospital in the city. Not surprisingly, I'm a little sad about the change, because of that "everyone is moving on but I'm still here" feeling. 

This was my first time meeting this new NP, and I like her. I was impressed by how thoroughly she read my file before my appointment. She knew all about my current medications and the side effects I reported at my last oncology appointment. 

I was really happy to hear her say that my chest looks "fantastic". I mean, I'm sure she would never say anything negative, but she sees a lot of surgery results and she could have just said nothing, right? Or, who knows, maybe she is very good at her job and knows how valuable it is for patients to be reassured. But I have seen photos of both really great and really poor results, and I think mine are in the A- range. Like my old NP, she did point out the little "dog ears" at the outside edge of each incision, and reminded me that I could get them removed if I want. It might even be an office procedure, not a real surgery, but at least right now, I don't feel any urge to get it done.

She asked how I felt about not getting reconstruction. Some people do choose to reconstruct later, but I said I am really satisfied with my decision, I don't regret it at all. I can't say I love being flat, and I'm still struggling with clothes, but I never wish I had gotten reconstruction. Being flat just feels, to me, like the natural consequence of having had a double mastectomy. She was generally supportive and reminded me that I could wear prosthetic inserts if it helps with the clothing dilemma. (I literally had forgotten I had that option!) 

I did not feel rushed at all during the appointment, and was a bit surprised to realize, after it was over, that it was only 15 minutes total. 

My next appointment will be in another year.  She said I'll have yearly follow-ups for 5 years after diagnosis, so I guess a couple more years. I didn't ask what happens after 5 years; right now I don't think I'm ready to hear that they'll just cut me loose. She confirmed that I'll continue to only get manual breast exams, and that imaging will only be ordered if necessary.  

5/14/21: Lupron

I saw another new nurse today. She said she usually works at the main hospital in the city, but sometimes works per diem at my location. She was especially thorough in asking me if I had any concerns or questions or new symptoms, if I needed any new prescriptions or additional appointments, if I was eating well and exercising and taking care of my mental health. It seemed a little much, but I have to admit, after the last few appointments feeling so routine and unremarkable, it was nice to have someone appear to take an interest, even if she was just doing her job.

The hospital pharmacy was slow in sending up my Lupron, so I had to wait about half an hour for my shot. The visit wasn't as quick as usual, but everything went fine, and the nurse was good at giving a painless injection. 

Besides this appointment, I happened to notice over the last couple days that my chest doesn't feel quite so numb as before. It's still numb in areas all across my chest and armpits, it just feels somewhat less weird. But I honestly can't tell if it's actually getting better, or if I'm just getting used to it. 

I stopped doing daily physical therapy exercises a long time ago, but I definitely still need to stretch my arms regularly, or else I start to feel some tightness, particularly in the muscles surrounding my underarms, and my right shoulder blade. I don't know anything about the musculoskeletal system, but I do find it interesting how my surgery has affected all sorts of muscles, not just those in my chest. 

1/7/21: NP Appointment

Today's appointment was a routine follow-up with my NP in the Breast Center. I don't get any regular imaging to look for cancer recurrence, just these physical breast exams.

I had forgotten how thorough my last appointment was, so I was pleasantly surprised when she asked me how all my various side effects and treatments are going. I told her about my recent spotting and upcoming pelvic ultrasound, and she seemed to think I will most likely still be able to continue with Lupron. I couldn't tell if she was basing that on experience and what she's seen in patients, or if she was just trying to be encouraging because I said I wasn't excited about potentially having to get my ovaries out. 

During the physical exam, I was happy to hear her say that my DMX incisions look good. She asked if I'm using anything on them to reduce the scarring, and I said no, because I don't really care how they look since no one sees them but me. I asked if I should be using any products for healing purposes, but she said no, only for aesthetic reasons. I told her I am using Mederma on my port scar, and she said the port scar is always worse than the mastectomy scars! She said she sees it all the time and doesn't understand why. I said, only half-jokingly, that maybe my breast surgeon is just that much more skilled than the port installation/removal surgeons. 

She also mentioned that if I ever feel uncomfortable with my dog ears, I can have them removed with revision surgery. My dog ears are pretty small, they're a bit of extra skin at the end of my mastectomy scars, under my armpits, that pucker out a little. They're annoying, but relatively minor, and I'm okay just living with them, at least for now.  

It was something of a relief to have a medical appointment that went so smoothly, with no new or on-going issues to manage. My next NP appointment in the Breast Center will be in a year, the longest stretch I'll have had between appointments. I think it's noteworthy that at this point, I do feel comfortable with yearly appointments; that "baby bird" feeling is subsiding, and in its place, I'm feeling an increasing eagerness to get to a point where I just have a stable schedule of routine appointments without any new concerns.

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.

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

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

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

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

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

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

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

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

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

7/9/20: Physical Therapy Virtual Appointment #20

My physical therapist called on Monday about scheduling a virtual appointment, but she called my cell phone, which I don't always keep at arm's length, so I missed the call.

I called the Cancer Center on Wednesday, and the scheduler said the physical therapist is doing both virtual and in-person visits. But she's not seeing patients on Fridays, the day I usually go in for treatments. I'm still wary when it comes to the coronavirus, plus I figured, I don't have any urgent concerns, so I decided to schedule a virtual visit.

The virtual appointment was today, and we spoke on the phone for 30 minutes. I told her about my current baseline: I wear wrist braces to sleep every night, and my thumb, pointer, and middle fingers are mildly numb and tingly all the time, but don't disrupt my daily activities. I also described the painful flare-ups that led me to take a break from basically everything.

She asked me a bunch of questions along the lines of: Am I getting headaches? Do I have any pain in my shoulders? Do my arms feel tired? Do I have symptoms in my legs or feet?

After all that, she was very confident in saying that she would like me to get an MRI. She said that symptoms that are side effects of medication usually do not change with a person's activities, so the fact that lying down on my back seems to be a trigger for making numbness and tingling worse is an indication of a non-medication-related problem. (My medical oncologist said the same when she first proposed the MRI.) She also thought that the symmetry of my symptoms, and the existence of some numbness and tingling in my toes, suggested something going on in my neck. If we had had an in-person visit, she would have performed some physical tests on my neck, and even then, she still would have wanted an MRI so that we could have all the pieces of the puzzle. Ideally, an MRI will either confirm or rule out a neck problem.

As for why I might be experiencing neck problems, she explained how my double mastectomy resulted in major changes to my chest wall that ultimately affected my chest, shoulder, and neck muscles, which are all interconnected.

I told her how I had been leaning towards not getting an MRI until after my Herceptin treatment ends, in case Herceptin is causing some of the symptoms, but she said not to wait. If the problem is not Herceptin, the sooner it's treated the better; if the problem is nerve-related, letting it go unaddressed now might make it harder to treat later.

She said she would email my medical team about scheduling me for an MRI. Then I can schedule an in-person appointment with her after we have the MRI results.

As always, I really appreciated my physical therapist's insights. Getting her professional opinion felt very reassuring.

6/25/20: NP Appointment

Today I had my "6-month" surgery follow-up. It was originally supposed to be in March but was re-scheduled due to the coronavirus.

Unlike at the Cancer Center, I didn't get a pre-screening phone call in advance. When I arrived at the hospital, a check-in desk was set up just inside the main entrance. I was given a slip of paper with instructions to call the Breast Center from my car. The waiting room isn't open yet, so they're only letting in patients when exam rooms are ready. I went back to my car to call the number. They asked me some COVID-19 screening questions, then said I could come in.

Re-entering the building, the check-in desk had me sanitize my hands before heading to the Breast Center. Masks were required at all times, but they didn't ask me to swap out my cloth mask for a surgical mask, as the Cancer Center does. In the halls, any place where people were likely to line up, new markers on the floor showed where people should stand in order to maintain distance. Checking in for my appointment, new pexiglass dividers were installed in the reception area, and they had me verbally give consent for treatment instead of signing a form. A medical assistant brought me directly to an exam room and took my vitals. 

I was pleasantly surprised when the NP asked me about all aspects of my treatment, not just my recovery from surgery. She asked whether or not I was considering removing my ovaries instead getting the monthly Lupron injections. I have some reservations about getting an oophorectomy, and I'm hesitant to opt for an elective surgery. She said most women opt for the oophorectomy eventually, sometimes just to avoid having to come in for monthly appointments. Still, even though I have variants of unknown significance in genes linked to ovarian cancer, it's not advised to make medical decisions based on VUS-es, which is what my genetic counselor and my first medical oncologist had told me, too. She reassured me that I can continue to think about it and always make a decision later. She also suggested I ask my new medical oncologist, and the oncology NP, for their thoughts, too. 

I went through an overview of the symptoms in my hands. She agrees with my medical oncologist that the stiffness in my fingers is probably from the exemestane. She was just as perplexed about the numbness and tingling as everyone else. She seemed to think it's reasonable to wait and see how my hands feel after I finish Herceptin before investigating it too deeply. And she said she'd contact my physical therapist about scheduling an appointment for me when she starts seeing patients again, in case some physical therapy might help. 

I also mentioned that my arms get tired and sore more easily. When I hold a phone to my ear, the inside of my elbow, maybe even my bicep, starts to feel tight pretty quickly; I have to extend my arm for relief, and I end up switching the phone back and forth between my left and right hand. Also, things that I wouldn't have considered "heavy" before now feel heavy. She said my arm muscles have probably weakened from having to use them less while recovering from surgery. I remembered that my physical therapist was just starting to give me strengthening exercises when the pandemic hit, so that's another thing to bring up with her when I can get an appointment.

She finished the appointment with a physical exam, and said my scars are healing fine. I reported feeling patches of numbness and tingliness across my chest, and she said it's normal. She reminded me I can ask for a prescription for contoured prosthetics any time. 

At first she said my next follow-up appointment would be in 1 year, and in between I would see my medical oncologist, so that I'd see one or the other every 6 months. I think she saw right away that I was surprised at the schedule. Another baby bird leaving the nest feeling! She immediately offered to see me in 6 months, through the end of my Herceptin treatments, and I'd start with yearly visits after that. 

To minimize interactions due to the coronavirus, there was no check-out process, and someone is supposed to call me later to schedule my next appointment.

I hadn't seen my NP in so long, I left feeling pretty good knowing that she's another person on my medical team with whom I can discuss my treatment.

2/21/20: Lupron + (6 Months Post-DMX) Physical Therapy Appointment #19

I took another dose of Lasix and potassium yesterday. I think these last 2 doses did reduce the swelling in my left hand, but it's still not entirely gone. It's like a residual puffiness that just won't go away.

I don't think I'll take Lasix again unless my symptoms relapse. Right now, it's just a little swelling in my left hand. I still wake up with "tightness" in my fingers (my joints feel tight when making a fist), plus mild numbness and tingling in both hands. The bulk of it goes away after getting up and moving around, and everything improves during the day, but a mild tingliness persists, and just my fingertips feel numb. Occasionally, I get shooting nerve sensations (not painful) when using my hands. Also, my thumbs feel a little achy. And my left hand is worse than the right.

So today I went in for my monthly Lupron shot. Got my vitals taken, got settled in a bay, then had a bit of a wait. My regular infusion nurse wasn't there, and I was seen by my original oncology nurse. The shot itself took only a minute, but we spent quite a bit of time going over my numb and tingly hands.

I told her how frustrating it has been not being able to identify a primary source for all the symptoms, which means not knowing how best to approach the problem. I think I definitely had pinched nerves from swelling, because reducing the swelling (with Lasix) did help a lot. But why was I swollen in the first place, and how can I eliminate the swelling completely? Or would that be impossible, because it's a side effect as long as I'm on Lupron? Could the remaining numbness and tingling actually be a completely different issue, like carpal tunnel syndrome from the exemestane? Or are they related to nerve-regeneration from my DMX? Could the tightness in my fingers be joint pain from the exemestane? I wish I could know if I'm getting symptoms from a problem that can be addressed and fixed, or if I'm having side effects from medication or surgery that might just go away in time, or won't go away and need to be managed.

In March I have appointments scheduled with both my medical oncologist and my Breast Center NP. Hopefully one or both of them will have some insights. If not, my nurse said it might help to see a hand specialist, like an orthopedist or neurologist. I really hope it doesn't come to that.

I also saw my physical therapist today. Regarding my hands, she said that chemo-induced peripheral neuropathy sometimes feels like numbness in just the fingertips. I didn't have neuropathy in my fingers during chemo, but she said sometimes side effects can be delayed and appear even after chemo ends. Well, that certainly was true about my hair, the way I lost my eyebrows about a month after chemo ended. So, I guess I can add chemo to the list of possible causes.

She worked on my cording and said that if it's not bothering me in any way (not causing pain, not limiting my range of motion), then we can consider the problem resolved, even if the actual cord is still there under the skin. At this point, I can only feel the cord in my right underarm if I go looking for it.

She said I've regained full range of motion. Yay! I'm capable of moving my arms (slowly) any which way, but I still feel a bit of discomfort when driving, and sometimes when I need to reach for something. I should continue with stretching every day (I can feel the difference if I skip a day or two), and can start adding in some strengthening exercises. She gave me a modified plank exercise, using a counter-height surface, to add to my regimen.

Last week she was at a conference for cancer-related physical therapy, and she said she learned a lot about deep breathing, which involves breathing through the diaphram and belly. She said deep breathing can help move lymphatic fluid, which might help with the swelling, which in turn could help with the nerve-related symptoms. She instructed me on how to do deep breathing, gave me a new exercise, and also suggested adding deep breathing to my stretches. Apparently, deep breathing can also help with stress and anxiety, so maybe there will be lots of benefits.

Looking ahead, she scheduled my next appointment for a month from now, which actually made me feel a little nervous. Of course the goal is to be in good enough health to be released from all these medical appointments. But I have gotten so used to going to the Cancer Center that not going as often feels like a big transition. Even when I stopped chemo, I still came in almost every week for physical therapy. Without these weekly physical therapy appointments, there is no automatic time set aside for me to check in with a medical professional about how I'm doing. I feel kind of like a baby bird, not quite ready to leave the nest. My physical therapist was very reassuring, saying these feelings are normal, and she sees it all the time. She said if the cording comes back, or if my existing symptoms get worse, or if I'm concerned about anything new, all I have to do is call and set up an appointment. Well, when she put it like that, it sounds perfectly reasonable and doable.

2/18/19: I Took Another Dose of Lasix + Potassium

Being on more than one medication at a time (Herceptin, Lupron, and exemestane) and still recovering from DMX surgery makes for a real challenge when trying to figure out what is causing which side effect or symptom.

I know the numbness and tingling in my hands, and the stiffness in my legs, all started before I began taking exemestane, but I wonder if the exemestane is making them worse.

"Aching or pain in the joints and muscles" is listed as a side effect for exemestane. Every time I stand up, I feel like an old person. I've also been feeling some achiness in the joints of my fingers, and a very localized pain in the joints of my thumbs; maybe it's from the swelling in my hands, or maybe it's from the exemestane.

Carpal tunnel syndrome, which can cause tingling and weakness in the hands, is also listed as a side effect. It makes me wonder if symptoms of carpal tunnel syndrome might be overlapping with the symptoms from nerves being pinched from swelling, which itself could be related to DMX recovery or Lupron.

These days, I wake up with mild numbness and tingling in both hands. My fingers feel tight if I make a fist, but it's not difficult to make a fist, which used to be a problem. My hands don't feel weak anymore, and they no longer feel like they are constantly on the verge of getting worse. Mostly my hands feel better after moving around for a while, but I still have mild tingling, and numbness in just my fingertips, throughout the day. And my left hand feels worse than my right.

Even though the overall swelling has gone down a lot, I can tell that my left hand is still swollen compared to my right. I didn't feel any difference after taking the second dose of Lasix, but since my left hand still looks and feels puffier, I went ahead and tried a third dose today, along with the prescribed potassium supplement. 

2/8/20: My Hands Felt Better After Taking Lasix

After I took the Lasix yesterday, I expected a dramatic increase in having to pee, but that didn't happen. I don't even think I had to go more often than usual, but maybe the volume was higher.

Anyway, I did wake up with my hands feeling better!

I first noticed a difference in the middle of the night. Usually if I have to pull my covers up, it actually hurts my hands to get a firm grasp on my blankets. But last night, I didn't have that problem.

When I woke up, my hands still felt tight, especially when making a fist, but unlike before, I wouldn't say it was difficult to make a fist.

I did feel some tingling, at times isolated to my pinky and ring finger, but it was a lot more mild, and didn't come with any numbness.

I was even able to linger in bed a little while, without my hands feeling worse, instead of having to jump up as soon as I wake up, as I've had to do recently.

I still did my morning routine, and I still felt some mild tingling throughout the morning, but it didn't actually disrupt my activities, like I didn't have to stop brushing my teeth to keep symptoms from getting worse.

I'm happy to see some improvement! Will have to see how the next couple days go...

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.

2/3/20: Sleeping on My Right Side Helped

I've been sleeping on my back for so long, I honestly forgot that sleeping on my side was an option.

Since my hands feel worst in the mornings, I wondered if sleeping on my back was part of the problem. I've noticed that even when I try to lean back while sitting, or lie down on the couch to rest, any reclining position makes my hands feel worse.

Sleeping on my right side actually did seem to help. I was able to find a kind of natural position for my arms, keeping them mostly straight, and they felt better than when I sleep on my back. Even now, my right arm and hand feel better than my left.

Still, I woke up a couple times because of my hands, and the only way to really get relief is to get up and walk around.

After one waking, going back to bed, I tried sleeping on my left side. My numb and tingly chest makes sleeping on either side a little weird, but the port on my left side makes it feel even weirder. Plus, I couldn't find a comfortable position for my arms. I'll keep trying, though.

Meanwhile, during the day, my hands definitely feel best when I am walking around and being active. But I still suspect that being too active is a factor in the swelling in the first place. So I'm trying to find a balance of keeping active, but not too active.

1/31/20: Physical Therapy Appointment #17

Today's appointment went well. I find these weekly appointments reassuring. I like knowing that I have someone to check in with regarding anything new that might come up. Of course the ultimate goal is to be released from all these appointments, but right now, it's comforting to have them as part of my routine.

I told my physical therapist about how sometimes only the pinky and ring finger get numb and tingly on my left hand. Apparently those two fingers are related to the ulnar nerve. She gave me a new nerve glide exercise to do, but I should only do it if I continue to feel numb and tingly in just those two fingers. She said exercising the nerves too much can actually irritate the nerve and make symptoms worse.

I mentioned my theory about why I suddenly have these symptoms, and she said it's very typical for cancer patients - especially women with kids - to jump too quickly back into old routines, causing set-backs. I said I was mentally prepared for all the side effect during chemo, but didn't expect to feel so poorly even after chemo ended. She said chemo can actually advance the aging process, and regular exercise is the best way to help combat that possibility.

She worked on my cording, and again, it helped a lot! This is what it looks like now. (It's quite a bit more extensive than at first.)

The "cord" runs in a straight line from my armpit through the inside of my elbow up to my inner wrist (the same side as my thumb). I can sometimes feel a "pull" along the cord, usually near my wrist, even though that's where it's least visible. It's most palpable in the armpit, where it feels like a taut wire under the skin. Actually, in the armpit, it has kind of a webbed look, which I guess is why cording is also called axillary web syndrome.

1/30/20: My Hands Continue to Have Symptoms

Another week of paying very close attention to my hands and arms. When I wake up, I'm in 1 of 3 possible states:

• Guarded - My hands feel "puffy and tight", and it can be hard to make a fist. This state can take several hours to wear off.
• Moderate Alert - My hands feel "numb and tingly and puffy and tight" a.k.a. "weird". Sometimes only a couple fingers (usually the pinky and ring finger) feel tingly.
• High Alert - One or both hands feel like they "fell asleep". This feeling can sometimes also be limited to just a couple fingers. It's worrisome. I basically can't use my hands. 

In each state, the goal is to improve the status, or at least not make it worse. I need to get up, walk around, swing and stretch my arms. I have to avoid gripping things (e.g., cell phone, knife, toothbrush), which can trigger the next worse state.

I've started a new morning routine that includes arm and shoulder exercises (arm swings, arm circles, shoulder rolls, head rolls), the nerve glide exercises from my physical therapist, and rubbing each arm with moisturizer. My hands and arms definitely feel better after going through all that.

I have a theory about why I'm experiencing this weird arm swelling and nerve-related numbness and tingling. All the symptoms came on after school was back in session (after the holiday break), and after I started driving my dad to radiation daily. Up until then, from surgery through chemo, I was really taking it easy; Ken and the kids helped with household chores, and I only did light driving. For some reason (I think I felt like I ought to be getting back to "normal" by now), when we picked back up after the holidays, I jumped in with full pre-surgery routines, plus I'm driving my dad every day. (It's worth noting that when I drive, I still can't turn the steering wheel hand-over-hand without feeling some discomfort.) I think my arms are swelling from being over-used. Also, my chest and underarms were already feeling "weird", presumably from nerve regeneration. So maybe those two things combined - swelling causing pressure on my nerves - is what I am feeling. I don't know. Just an idea.

Unrelatedly, but for the record, I'm still losing hair. My eyebrows are almost gone, I've got just a few hairs hanging on. So weird. Interestingly, though, eyebrow hair must grow quickly, because I can already see tiny new hairs coming in.

1/24/19: Lupron + Physical Therapy Appointment #16

Since I only needed a shot today, I expected to be in and out of my nurse appointment in a matter of minutes. It turned out to be almost half an hour, in a good way.

The medical assistant took my vitals as usual, then walked me to a bay.

I had to wait a bit for my infusion nurse, and then I was pleasantly surprised when my nurse took the time to ask me for an update on my hands feeling numb, tingly, puffy, and "tight". Not sure how to summarize all that into one word, as it's really all those feelings at once; I'll just say it feels "weird".

I've been paying close attention all week. I'm most worried when it feels like it's "asleep". This feeling can last as long as 20 minutes, and I get nervous about permanent damage. Even when the "asleep" feeling wears off, the "weird" feeling can last a couple hours.

Things I've noticed this week:

• Every morning I've woken up to one or both hands feeling weird or asleep.
• If my hands feel weird, using my cell phone before getting out of bed can trigger it to feel asleep. Not sure if this is related to my elbow bending, or my hands gripping the phone.
• If my hands feel asleep, the feeling won't go away on its own. I have to get out of bed, walk around, stretch and swing my arms.
• If my hands feel weird, actions like using a knife or a spatula while making breakfast will make it worse, including feelings of pain and weakness. I have to stop and shake my hands out before being able to continue.
• If I sleep with my forearms propped up on pillows, in a "natural" position, it's possible to wake up without my hands feeling asleep. But they'll still feel weird.
• Getting out of bed immediately to walk around, stretch and swing my arms, seems to help. I feel like I'm warding off the asleep feeling. 

My nurse said walking around might be helping with my blood and/or lymph circulation. She suggested having a kind of arm exercise routine to do first thing every morning. She also suggested asking my physical therapist if I should consider wearing some kind of sleeve, not exactly a compression sleeve, but maybe something like arm warmers.

So the shot itself took only a minute, and the rest of the time was spent talking about all that.

I had my physical therapy appointment right after, and basically went over everything again with my physical therapist.

My physical therapist figured it's nerve related. She stretched each arm in three specific ways to see which positions might trigger the weird feeling. It was hard to tell because my hands were still feeling weird from this morning's episode, but definitely a couple positions made it worse. She also moved my head and neck in specific ways, but none of those positions triggered any weird feelings.

She gave me "nerve glide exercises" to help release any pressure on my nerves. Not these exactly, but along those lines.

Regarding my nurse's sleeve suggestion, she said it probably wouldn't hurt to try it, but wearing something tight on my arms, and not my hands, might actually make my hands feel worse.

It occurs to me that if these problems are nerve-related, then maybe it's a side effect of the double mastectomy, not any of my medications. But why now, 5 months later? Maybe some nerves are having trouble growing back?

Anyway, my physical therapist also worked on my cording, and it helped a lot!

I have to say, I'm kind of annoyed at this "two steps forward, one step back" kind of progress. I'm moving forward in my treatment schedule, and my cording finally seems to be improving, but now I'm hit with this very concerning numbness and tingling and swelling in my hands.

1/17/20: (1 Month Post-Chemo, 5 Months Post-DMX) Side Effects and Symptoms

Both my cancers were hormone receptor-positive, which means estrogen and progesterone fueled their growth. Chemotherapy was supposed to kill any existing cancer cells that may have escaped from the tumors, but there's always a chance that whatever conditions in my body that produced the cancer cells in the first place still remain, and so could produce a new cancer. My hormone therapy is supposed to prevent recurrence; the goal is basically to eliminate the presence of estrogen, so there won't be any estrogen to fuel any new cancer growth.

My monthy injection of Lupron is for ovarian suppression; it stops my ovaries from making estrogen (and puts me into a chemically-induced menopause). However, other parts of the body also produce estrogen. So today my medical oncologist prescribed exemestane, a daily aromatase inhibitor pill that will stop any remaining production of estrogen.

I seem to have a compulsion for tracking my side effects and symptoms. So before I take my first exemestane pill tonight, I wanted to record my current baseline of how I'm doing.

It's been about a month since my last chemo infusion, and since then, I've been on just Herceptin and Lupron.

Interestingly, even after chemo ended, I continued to lose body hair, like on my legs and in my armpits. Like the hair on my head, though, it's not complete hair loss, so a few hairs remain.

Meanwhile, the hair on my head has started to grow back. I can see tiny new hairs interspersed with the slightly longer hairs that grew from shaved hair that never fell out.

I stopped noticing blood in my nose about 2 weeks after chemo ended. My sense of taste also seems to have fully recovered.

My eyesight still feels off. The blurriness isn't quite as bad as before, but it's still there.

The acne hasn't really gone away, either, but it's improving.

My belly still feels flabby. I remember being told that menopause makes losing weight more difficult. I haven't made a conscious effort to lose weight yet, though I am about 5 pounds heavier than I was before chemo.

I'm not as tired anymore, as evidenced by my ability to stay up past 9:00 pm on a regular basis. Also, during chemo, I almost always needed to lie down at some point in the late afternoon, but I haven't been doing that lately. (Perhaps relatedly, I've started to drink coffee again, and usually have a cup in the mid-afternoon.)

At 5 months out from my DMX, my chest and right underarm still feel weird, but to an even greater extent than before. The areas are still numb, but also tingly, especially when touched, and my chest actually feels tighter. I think this is what others refer to as the "iron bra" feeling. My upper right arm, particularly around the underarm area, sometimes feels like pins and needles. I wonder if all the increased sensations means that some of the nerves are growing back. And/or maybe I need to do my stretches more frequently and/or consistently.

The cording persists. It comes and goes, but is overall worse than it was at first.

For the record, the stitch that poked out from one of my incisions is finally gone. It was significantly smaller and less noticeable about a month after I first discovered it, but it took over 2 months to fully go away. Now there is a tiny hole where the stitch used to be. I'm assuming it will close up in time.

Recently I've noticed a couple new side effects / symptoms, as I reported to my medical oncologist today. There's the leg stiffness that I first noticed a couple weeks ago, and also the numbness and tingling in my fingers and swelling of my arms (possibly fluid retention) that just started this week.

Geez. When I lay it all out like that, it's depressing. I can hardly recognize my own body. It's hard to believe that one year ago, I felt perfectly healthy. Now, is there even a single part of my body that's come through cancer treatment unscathed?

Honestly, when I think about it, I think my ears, and my sense of hearing, are literally the only things that have not been affected.

From another perspective, of course, I know I'm lucky. I'm still here, and my prognosis is good.

12/6/19: Chemo Cycle #10 of 12 + (3.5 Months Post-DMX) Physical Therapy Appointment #9 + Nurse Removed Port Incision Stitches

Warning: This post contains photos of my unhealed port incision.

Today I drove myself to chemo. I think it went fine! I'll plan to drive myself for the last two treatments.

I had a 10:45 appointment to get my port accessed, but the port nurse was running about 30 minutes behind schedule. The Cancer Center was super busy today, even the parking area was full. The port nurse said it's because the flu is going around early this year; patients are supposed to call their oncologist if they get a fever during chemo.

After getting my port acccessed, I was 30 minutes late for my physical therapy appointment. Luckily my physical therapist didn't have another appointment immediately after my original time, so she could still see me without much disruption to her schedule. She purposely scheduled this appointment before my infusion appointment so that we could meet in her exam room, making it easier to take measurements of my range of motion. It was very satisfying to see objective evidence of improvement!

Meeting in her exam room also gave us more privacy for her to look at my DMX incisions. She massaged them to help break down the scar tissue. The area is still numb, and tingly when touched, so it felt weird, but not in a ticklish way. She said I've healed really well; my incisions are nice and smooth, no bumpiness or puckering, which can sometimes happen. (There's a bit of extra skin at the outer end of each incision... They bother me, but I'm working on accepting them.)

I told her I was still feeling a kind of tightness in my right arm. She took a look and said it's cording again. She massaged the area, and it did feel a lot better afterward. She said she'd schedule me for another physical therapy visit next Friday, while I'm in the infusion room, to work on the cording some more.

I got to the infusion room around 12:00. My usual nurse had told me she'd be out, and I had the same substitute nurse I had once before.

I started my pre-meds around 12:15. Started Herceptin just after 12:45, and then Taxol at 1:30.

After the Taxol finished around 2:30, the nurse took out the port incision stitches. It took a while because the nurse said the stitches were really tight, she had a hard time cutting them. I figured that was a good sign that the stitches were done well, but when I finally had a chance to look at the incision at home (no mirror in the infusion bay), I was disappointed. The bottom half, maybe 2/3, looks closed. But a portion at the top is still open.

At this point, maybe a series of photos would be helpful. Here's what the incision looked like over time:

6 weeks after port placement.
Not healing, 2 spots not closed.
Started using antibiotic ointment.

8 weeks after port placement.
Entire incision not closed.
Stopped using antibiotic ointment.

9 weeks after port placement.
Incision closed tightly with stitches.

10 weeks after port placement.
Stitches removed after 9 days.
Inside circle, not closed.
Left of circle, a scab spans opening.
Left of scab, skin is closed.

I guess when I compare the little opening after stitches to the big opening before stitches, it's definitely an improvement. It's just kind of ironic how the two giant DMX incisions healed so smoothly, and this 1-inch incision is having so much trouble.

I wonder if the stitches were taken out too soon. From what I can gather, stitches on the chest area are generally removed in 7-14 days; mine were removed in 9 days, clearly within the range, but on the early side. I did some Googling, and I guess wounds opening up after stitches are removed is not uncommon. It sounds like, if "too much time" has passed, the opening won't be re-stitched, and the person just has to wait patiently for the wound to heal across the gap, which takes a long time (could be months) and results in a more prominent scar. In my case, these stitches are already the re-stitch, so a re-re-stitch seems unlikely. The re-stitch was a solid 2 months after the original surgery, too, so maybe it was already "too late", but they tried.

I was lamenting the potential scar, and my son said, "No, it's good to have battle scars! They prove that you've gone through hardships. You're badass!" (Reminds me of the meme I posted about my DMX incisions.)

I assume I will get another incision in essentially the same spot when my port comes out in about a year. However it heals now, it is what it is. The port removal procedure will leave me with the final scar, and there's still a chance to get a better result then. It's just unfortunate, and annoying, that it's not healing smoothly.

Anyway, circling back, I left around 3:00, so my visit today was over 4 hours, one of the longest. Thankfully, lunch was included.

Oh, there was something new on my blood test results. I had a value very slightly out of range on the high side for Phos (phosphate). As far as I can tell, phosphate is one measure related to kidney function. I guess it's weird that I want to look at my numbers when I don't understand them. But I like to check just in case some numbers go way out of whack. It's reassuring when they are mostly within or very near normal ranges.

12/7/19 Update: Spoke too soon. Woke up this morning to find the bottom part of the incision has opened up. Not as much as the top part, but it's definitely not closed, there's a gap. OH, WELL.