6/25/24: Cardiology Appointment

Today I had a 1-year follow-up appointment with my cardiologist.

The first thing they did was do an EKG. Without being specific, my cardiologist said the results were "weird in the same way as last year." In last year's appointment notes, she called it "inferior and anterolateral ST depressions". In this year's appointment notes, she mentioned only "NS diffuse STT changes", which I looked up and appears to refer to "non-specific" changes in the "ST-T wave" that are "seen in all or most of the leads". 

I have no idea how to read an EKG printout, but in the past I still liked to keep them for my records. Now my hospital has moved to a new online system, which doesn't give me access to EKG results! Too bad. 

The cardiologist asked me a bunch of questions to see if I have any symptoms of heart trouble. Do I get winded going up a flight of stairs? Do I get tired while grocery shopping? Do I ever get dizzy? I don't seem to have any symptoms, so she'll just continue to recommend EKGs every 6-12 months while I'm on hormone therapy. I don't think it's clear whether these EKG abnormalities are related to hormone therapy or covid, so I guess there's not much to do but monitor it.

I asked her about magnesium supplements. I had previously asked my medical oncology NP about taking magnesium for anxiety, and she was supportive of the idea, though my PCP was not keen on it. My cardiologist said she's not concerned about heart issues as long as I took a "typical" dose, but then went on to say things similar to what my PCP said, like instead of supplements, she favors getting more magnesium naturally via diet, and trying to manage anxiety via lifestyle changes.

Anyway. We talked a lot about my blood pressure, which is just borderline high. She said the goal is for my blood pressure to be below 130/80. My top number is very consistently below 130, but my bottom number hovers around 80. I like that she talked about wanting to lower my chances of needing medication some day, which means I really need to make more of an effort to consistently exercise / walk for 150 minutes a week. We also talked about minimizing sodium intake, eating more vegetables, and staying hydrated.

Finally, she ordered an echocardiogram, which I scheduled for August, to make sure my ejection fraction is stable in the normal range. She said as long as it's in normal range, even if it's low, we'll just monitor it via echocardiograms "periodically," which I assume means some frequency less often than yearly.

8/8/23: Cardiology Stress Test

Yesterday I had my cardiology stress test, which was recommended at my last cardiology appointment.

My cardiologist had told me that the doctor on duty to attend to the test may not be her, and it wasn't. It was another woman, who was masked! She was the only other person in the office, besides me, to wear a mask. 

I was told to avoid caffeine for 2 hours before the appointment, and to wear sneakers and comfortable clothes.  

There were 2 people in the room with me the whole time, a nurse (I think, she may have been a medical assistant, I'm not sure) and a technician. They were both very nice, but not talkative, which was okay with me. 

They had me change into a johnny from the waist up. The nurse put a bunch of leads onto my torso, all of them connected to a belt they had me wear, so the wires didn't get tangled. They did an echocardiogram and an EKG and also took my blood pressure, for baseline values.  

Before we could start, we had to wait for the cardiologist to come in and give the okay. The nurse told me the doctor was in with another patient, and we actually waited for like 15 minutes, in almost complete silence. Haha. It was fine. I really don't mind when doctors are late, because I always figure, if I'm the patient the doctor is with, I'd want them to take the time to make sure I got the care I needed.

The stress test was divided into 3-minute intervals, designed to quickly increase a person's heart rate while they walk. There was a treadmill right next to the examination table, and in front of the treadmill was a big poster showing a numerical scale, with numbers corresponding to descriptions like "very light" and "very, very hard". During each 3-minute interval, the nurse asked me to describe the level of exertion I felt, and she also took my blood pressure while I walked.

First, the treadmill was set to a slow speed and small incline.  For this first part, I think I said the effort felt "light".

After 3 minutes, the treadmill incline and speed automatically increased. I described the exertion at this point as in between "fairly light" and "fairly hard" - it wasn't either, it just felt fine.

After 3 more minutes, the treadmill incline and speed automatically increased again. This time, I think I said the exertion felt "fairly hard". Towards the end of this 3-minute interval, the cardiologist said I was doing well above average! 

The nurse asked if I wanted to do the next level, which many people don't even get to. She said the setting would be very fast, and some people choose to jog it. I was curious to see how fast the last setting would be, so I said yes to trying it. At the 3-minute mark, the treadmill incline and speed increased again. I did it as a very fast walk, which I described as "very hard"! They had me do it only for 2 minutes, instead of 3.

After a total of 11 minutes, they stopped the treadmill, and I was instructed to keep walking until the treadmill came to a complete stop. Then I had to lie down on the exam table and roll onto my left side as quickly as possible so that the technician could do an echocardiogram while my heart rate was at its peak. The nurse also took some EKG readings and measured my blood pressure.

The cardiologist looked at all the data in real time and said nothing jumped out at her as problematic. She was very reassuring, but was also careful to say that it would take a few hours to review the details, and she would send the report to my cardiologist.

Back at home, later the same day, I was able to see my report in the online patient portal. The word "normal" appeared a lot, so I hope it means everything is fine! The only thing I really noticed was that it said my ejection fraction is 50-55%. Back when I was getting regular echocardiograms while on Herceptin, my baseline pre-Herceptin ejection fraction was 63%, and my last measurement after stopping Herceptin was 57%. So, it does appear that my ejection fraction never fully recovered from Herceptin. I'll have to remember to ask my cardiologist if this is something I should be concerned about.

3/9/20: Bone Density Test

My medical oncologist ordered a baseline bone density test because both Lupron and exemestane are reducing my estrogen levels - actually, together, the goal is to eliminate estrogen completely - and that puts me at risk for osteoporosis.

Because of the coronavirus, when I checked in, I got asked whether or not I am having respiratory symptoms and also whether or not I've travelled anywhere within the last 14 days. These questions actually show an evolution from a few weeks ago, when I was asked only whether or not I'd travelled to China in the last 14 days.

Anyway, I filled out a questionnaire about my bone health, and was instructed to change into a gown. I laid down on a table, and the imaging machine above me moved up and down my body making scans. The whole procedure was a lot shorter than I expected, I think it took like 10 minutes.

When I got home, I went for a nice long walk with my neighbor. By the time I got back, my doctor's office had already called with the results. I have osteopenia! I got 3 T-scores:

• Lumbar spine: -0.5
• Right proximal femur: -0.7
• Left proximal femur: -1.2

Only the -1.2 number falls within the osteopenia range, but the nurse who called me said it's enough to consider my overall results to be osteopenia. She said my doctor is prescribing 1200 mg of calcium daily and 1000 IU of vitamin D daily.

My old oncologist already had me taking 2000 IU of vitamin D, so I figure I'll stick with that. The calcium supplement I've been taking is 600 mg, so I'll just take 2 of those from now on.

I'm already trying to walk at least 30 minutes a day, 5 days a week, for breast cancer recurrence prevention. Apparently, walking counts as a weight-bearing exercise that is beneficial to bones, so that makes me doubly motivated to keep it up. 

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.

1/10/20: Physical Therapy Appointment #14

The cording in my right arm has gotten worse. I don't mean just this week, but over the last few weeks. It used to feel like a thin, taut wire, but now it feels like thick connective tissue. And I can sometimes feel the pull all the way down to my wrist. (Previously, I could only feel it in my upper arm, half-way to my elbow.)

I didn't have the time or energy to walk for about 2 weeks over the holidays, and I just re-started walking this week. I mentioned to my physical therapist that the cording actually seems better after I re-started walking, and she said it's possible the exercise helps get the lymph fluid moving, which might help with the cording.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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. 

12/5/19: Cycle 9 Side Effects

Side effects remain consistent, though I've actually been feeling more tired than usual.

I think it's partly because I haven't been exercising as much. My goal is to exercise (usually that means walking) at least 30 minutes a day at least 5 days a week. But last week I didn't walk on my usual days, first because of my port appointment, and then because we were busy with Thanksgiving. This week I skipped a couple days, too. It was too cold and snowy to walk on some days, and I could have used our indoor stationary bike, but I just felt too tired. Or maybe I was unmotivated. I remember my physical therapist telling me that "movement begets movement", especially during chemotherapy, and that the opposite is also true, i.e., being inactive makes you more likely to stay inactive. Anyway, I need to try harder to keep up with my exercising!

I also haven't been sleeping as well, maybe because I haven't been exercising enough. But I've also been waking up warm in the middle of the night. I don't think they're hot flashes, because it's not like I'm sweating or anything. Maybe we just need to adjust the thermostat.

Or maybe it's just all the chemo catching up to me. I really felt like I started this whole business with a pretty good attitude, but I have to say, after 9 weeks of it, and 3 more to go, it's kind of feeling like a slog.

A couple people have asked me if I'm planning to throw an end-of-chemo party. Nope. First, I'm not really a party person. But also, I'm not sure I'll feel like celebrating. Yes, it'll definitely be good to be finished with chemo! But I will still be getting targeted therapy via port infusions every 3 weeks for the rest of a year. Plus I will still have ongoing hormone therapy, including a daily pill, with all its own side effects, starting after chemo ends. And it's not like all my chemo side effects will suddenly disappear; I have read that it can take weeks, in some cases months, to feel "normal" again after chemo ends. The hair alone can take months just to start growing back, and then it'll take even longer to actually grow to a desirable length. The day I can stop wearing hats, maybe that will be a good day to celebrate.

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.

10/2/19: (~5 Weeks Post-DMX) Physical Therapy Appointment #3

I like my physical therapist a lot. Like many others I've encountered in my hospital, she is not just professional and knowledgable, she has a warm and kind personality as well. 

Most of today's session was spent massaging the cording in my right underarm. It hurt a bit as she rubbed the cords, but it also felt better afterwards. There are still a couple stubborn little cords that haven't snapped. 

Every week she measures the range of motion of my arms in degrees. She takes two measurements for each arm. First, while lying down, I raise my arm straight up and as far back over my head as possible. Then, still lying down, I hold my arm at my side and sweep it outward like I'm doing a snow angel. I like that there is a quantifiable way to track my progress.

Each week so far there has been some improvement in all measurements. I can also feel some muscles being used where I usually feel numb, so I hope that's a good sign. Anyway, my forward range of motion is improving more quickly. The sideways range of motion is still pretty limited; I can just barely hold my arms at shoulder level.

The physical therapy room is right across the hall from the chemotherapy infusion room. My physical therapist said she may be able to visit me and work on my cording while I get my infusion. She'll check her schedule against my infusion schedule to see if she can make that work. 

For my range of motion, I just need to keep doing the exercises. I'm not sure if the physical therapist can take measurements during infusion, too, or if I'll end up having separate appointments, which might not be needed every week.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Lots to report today!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

9/1/19: (9 Days Post-DMX) Should I Be Doing Arm Exercises?

After realizing how great the massages from Ken felt, I wondered if I should be doing any sort of arm or shoulder exercises.

According to posts on the Facebook support groups, there is a wide range of experiences. Some women got physical therapy information at the hospital before discharge, including both exercises to start immediately and exercises to do after drains come out. One person posted photos of the printed instructions for post-mastectomy exercises that they received in the hospital. Another posted photos of the pamphlet they received for exercises to do after a sentinel lymph node biopsy.

On the other hand, some women got no exercise information from the hospital. A couple people said they never felt the need for physical therapy, and the exercises they did on their own were sufficient. A few others said they started physical therapy about 2 weeks after surgery. Still others said they had to request physical therapy a few weeks after surgery when they felt they needed it.

I have not gotten any exercise instructions. I wish I had thought to ask about it in the hospital. It's on my list of questions to ask when I get my drains out, which I still hope will be this week.

In the meantime, I downloaded and printed the instructions other people posted. They are clearly labeled as post-surgery exercises, in one case with the hospital's name, so I feel like they are legit. But I'm also definitely wary of doing too much. And maybe my hospital purposely doesn't mention arm exercises until drains come out for a reason? Or maybe having the DMX and bilateral sentinel lymph node biopsy together means that exercises recommended for just one procedure or the other aren't wholly appropriate when you get both?

Well, it makes me feel psychologically better to have printed instructions in case I want to refer to them. It's useful information to have; for example, I had already tried gently reaching my arms over my head, which one set of instructions said I should not do with drains!

I won't bother with any formal exercises until I talk to someone in the Breast Center. I'm certainly more conscious now of the muscles that are stiff, and will try to engage in movements that will address my range of motion comfortably within my limits. Like I can easily do head rolls a few times a day. And I'll ask Ken for more massages. Haha.

7/29/19: Waiting

All this waiting is really hard.

I would have taken an earlier surgery date in a heartbeat, but since that's not actually an option, I just have to deal.

The silver lining of a late surgery date is that my family was able to keep all the summer plans we made before I even got diagnosed. It's nice that we can still have a normal summer. In June, we had a wonderful family trip to Niagara Falls. In July, we joined my in-laws for a very relaxing week-long beach vacation in North Carolina. On the drive there and back, we visited with family and good friends, old and new. And still to come we have a family reunion in Connecticut for my father's side of the family.

I read somewhere that a piece of advice patients are given is to take a trip to get away before starting treatment. Maybe it's a chance to celebrate your "old self" one last time before being forever altered. Or maybe it's a way to distract yourself from the anxiety of waiting. I think our trips have served both purposes, and I'm glad we took them. It's fortunate we already had them planned because I suspect I might not have taken the advice otherwise.

Another problem that comes with a late surgery date is a feeling of helplessness. There's nothing I can do to address the cancer now, I just have to sit around and wait?!?? Well, from the day I got diet and exercise advice from my friend who is a dietician, I have walked for at least 30 minutes almost every day. (I walk at least 5 days week, I am keeping track on my Fitbit!) I'm also trying to eat a more low-fat diet, though that effort has been much more of a challenge because I love food. Even though I haven't even gotten the original cancer out of me (and these recommendations were to help reduce recurrence rates), at least I feel like I'm doing something, rather than just simply waiting. I'll take any small feeling of empowerment anywhere I can get it.

I'm also planning ahead for my post-surgery recovery. I'm gathering items that I'm told will help make my recovery more comfortable, e.g., wedge pillows, cleansing wipes. I'll cook and freeze some meals like lasagna and wontons.

I still don't have access to the online patient portal, either, so I want to resolve that and get all my paperwork in order.

And on top of everything, there's the usual back-to-school business for the kids. I guess the timing is good after all so I can still tackle that to-do list. School supplies and new clothes and new shoes to shop for, not to mention the paperwork and phone calls and running around needed to authorize and acquire EpiPens / Auvi-Qs for both my kids for the upcoming school year.

So really, there's plenty to keep me busy while I wait...

7/12/19: Phone Calls + Medical Records + Diet and Exercise Recommendations

I called the Breast Imaging location to cancel my annual screening mammogram, which was on the calendar from being scheduled months ago, before all this happened. No breasts means no more mammograms for me!

I called my insurance company to ask if I needed to do anything for them in advance of my surgery. They confirmed that they have my breast surgeon referral on file, and it's the doctor who handles submissions for any authorizations that are needed.

At the suggestion of one of my cousins, I logged into my online patient portal intending to print out any official medical records related to my cancer. All the information I've gotten so far has been verbal, and it just seems like maybe it would be a good idea to have actual reports. But for some reason, the only records I could see online were ones related to my PCP.

I poked around on the internet and realized that even though my PCP's practice is a division of the parent hospital, there are actually two separate online patient portal systems, one for PCP practices, and one for the main hospital. I went through the steps to register for a main hospital account, which apparently takes 5-10 business days to be processed.

Meanwhile, in between figuring out the patient portal sites, I put a call in to my nurse navigator asking how I could get copies of my records. By the time she called me back, I had discovered the main hospital portal site. I said hopefully that account will give me the access I'm looking for. But since that might take up to 2 weeks, the nurse said she'd go ahead and mail me what's in my medical file already. She mentioned that she didn't see my genetic testing results in my file, so she'd follow up with the genetic counselor about that.

I also got a call today from a very dear friend who I've known for about 30 years. She's a dietitian, and has worked on clinical studies with breast cancer patients. She gave me some helpful advice on diet and exercise.

Regarding diet: Studies show that eating a low-fat diet can reduce recurrence rates, but it's not clear if that's due to eating more fruits and vegetables, or eating less junk food, or losing weight overall, or what. Without knowing exactly what has the most benefit, general recommendations include eating a more plant-based diet, minimizing consumption of red meat and processed foods, and eating whole grains. Okay, I can do that.

Regarding exercise: A recent study showed that 30 minutes of "moderate" walking 5 times per week can reduce breast cancer recurrence by 40%. (My friend said "moderate" is like walking at a pace where you can talk but can't sing.) I can do that, too!