What to Expect from Chemotherapy

I first drafted this post when I started chemo, and I meant to finish it just after finishing chemo, but it fell by the wayside. By now, I think I've forgotten some useful things I might have said if I had posted it earlier, but here goes.

These are my thoughts on what to expect if you're getting chemotherapy. Of course, experiences and treatments vary. I got 12 weekly infusions of a "low dose" of Taxol, plus Herceptin because I was HER2-positive. After that, I got a higher dose of maintenance Herceptin every 3 weeks for the remainder of a year. 

I think I was relatively lucky in terms of side effects, and I definitely got off easy in terms of not experiencing any nausea at all.

Understand Your Regimen and Schedule

Chemotherapy was recommended at my first meeting with my medical oncologist, and things moved quickly from there. Within days my husband and I had a "chemo teach" appointment with an oncology nurse who explained the process and answered all our questions. She provided complete information on my treatment schedule, all the drugs I would be getting (including pre-medications), expected side effects, and the prescriptions I would have to help manage side effects. This meeting was critical in setting my expectations for chemotherapy. She emphasized that my regimen was tailored to me, and every person experiences side effects differently, so I shouldn't compare my experience with that of others.

Two days after that meeting, I got my port installed. The aftermath of this procedure was actually more painful than I anticipated, but I felt better in about a week. 

The day after port placement, I got an echocardiogram because Herceptin can weaken the heart's pumping action. This echocardiogram would be my baseline, and my heart would be monitored by an echocardiogram every 3 months while on Herceptin. Getting the echocardiogram just one day after port placement, and 4 weeks after my double mastectomy surgery, I really couldn't lie on my side without pain, but the technician was very kind and accommodating, and was able to get the images without too much discomfort.

Before I knew it, one week later I was getting my first chemotherapy infusion.

Day of Treatment Routine

On the day of treatment, I made sure to wear a top that would allow easy access to my port. I could wear any shirt that was kind of stretchy, or had a V-neck, as long as it could be easily pulled aside to expose the port. Also, I made sure it was short-sleeved, since my blood pressure was taken at every visit, too.

About an hour before my appointment time, I used the prescribed numbing cream (lidocaine-prilocaine) for my port. The cream was thinner than I expected, and I was instructed to cover the bump of the port, located under the incision scar, so that it looked "like toothpaste". Over the weeks I found that it worked best if I didn't try to conserve it; just slather it on.

Then I covered the area with a square of Glad Press 'n Seal, so that the cream would stay in place and not get on my clothes.

At my Cancer Center, I usually first met with a nurse who accessed my port. With the numbing cream, I didn't feel a thing when the needle went in. (Sometimes I felt just a tiny poke if I presumably didn't use enough cream.) She drew blood via the port for blood work, which was checked each treatment to make sure I would be able to receive chemotherapy that day. (My numbers stayed within acceptable range, so I never needed to miss a dose.)

About every 2 or 3 weeks, after my port was accessed, I had an appointment with my medical oncologist. This was my opportunity to discuss any side effects.

Once in the infusion room, a medical assistant took my vitals.

My infusion room was set up with "bays". Instead of one big room where patients sit amongst each other, each patient had their own space that could be curtained off for privacy. Each bay had one recliner for the patient, an extra chair or two for company, and a TV.

Once in my bay, I got settled in my recliner. I liked having a pillow and one of the heated blankets provided by the hospital. Then, I basically just sat for the next few hours. All the medications that were administered through the port were hung on an IV pole, so I could get up and walk to the bathroom, pushing the IV pole along with me.

Line Up Drivers As You Go / Invite a Friend

My hospital usually provided me with at least 2-3 appointments at a time, so I had time to plan ahead. I was advised to not drive myself to chemo, at least at the beginning. One of my pre-meds was Benadryl, which could make me drowsy, and another was Decadron, a steroid that could make me jittery! Who knows how I would end up reacting to all the meds. 

My husband was able to work out a schedule at work so that he could drive me to most of my first several treatments, but I was also fortunate enough to have a few friends who volunteered to drive me. I decided to take up each friend's offer only once, so as not to burden any one person too much. On average, my treatments lasted about 4 hours, not including driving time, which added another hour at least (round-trip), so it was a pretty big commitment. As it turned out, having friends with me during treatment was one of the best things I did for myself during chemo. Even though I was hooked up to an IV and getting pumped full of toxic drugs, it was downright fun to have a solid chunk of time to just sit and chat with a friend. 

Towards the end of my treatments, I got a pretty good feel for how the drugs affected me, and with my infusion nurse's blessing, I did a trial run of driving home, with someone in the passenger seat just in case. After that, I was able to drive myself to my last few appointments.

What to Bring

Here's a list of what I brought to my infusion treatments:

• Port Pillow for the Car - If needed to cushion the port from the seat belt. My port was placed on my left side, so the seat belt laid right over it if I was driving; I didn't need a port pillow if I sat in the passenger seat, with the seat belt over my right shoulder. My port pillow attached to the seat belt, but it didn't stay in place very well; I had to re-position it every now and then. Still, it worked well if I placed it basically on my shoulder, lifting the seat belt away from my body so it didn't touch the port at all.
  
  
• Water Bottle with Straw Lid - I was advised to drink 2-3 quarts of water a day. I really loved the convenience of the straw lid.
  
  
• Lip Balm - My written take-home instructions after chemo said to use lip balm to keep my lips moisturized. I didn't always use it, but brought it just in case.
  
  
• Hand Sanitizer - It's important to be diligent about preventing illness during chemo. I always ate at some point during my infusion, so having a handy bottle of hand sanitizer made it easy to clean my hands before eating, without having to get up and drag the IV pole into the restroom to wash my hands. 
  
  
• Treatment and Reaction Log - I wrote down the date and time of all medications, plus all side effects I experienced. Each week I kept my infusion nurse informed of my side effects, and how I was managing. She gave me specific advice and suggestions based on how I was doing each week.
  
  
• Things To Do - I always brought my cell phone (my hospital had free Wi-Fi) and a book. Sometimes the Benadryl (one of my pre-medications) would make me feel loopy or tired, so I'd just sit and rest, or nod off. If I had a friend with me, we easily passed the time talking. Sometimes my social worker or my physical therapist (for my double mastectomy recovery; I had cording in one arm) would meet with me during my infusion time. Consider bringing a laptop, an iPad, a knitting project, anything to help pass the time.
  
  
• Snacks and Lunch - My Cancer Center actually provided snacks, drinks, and a lunch for me and a friend. But I would still pack a few snacks just in case.
  
  

Side Effects

My oncologist called my regimen "chemo lite" because I only got one chemo drug, and my dose was apparently very low. There are a whole slew of possible side effects you might experience, from acne to blurry vision to skin rash. I think I got off pretty easy; I had a lot of side effects, but they were mostly just annoying.

The side effects people most worry about seem to be the following:

• Fatigue - After a few weeks, I was able to see a pattern in my weekly cycles. I got my infusions on Friday. That night, I was up late and got very little sleep (sometimes as little as 3 hours), thanks to the steroid pre-med. Saturdays and Sunday mornings I felt pretty normal, and then would start to feel tired come Sunday afternoon. I'd go to bed early, making up for lost sleep. I was always most tired on Mondays, and would continue to drag on Tuesdays. On Wednesdays I would feel increasingly better, on Thursdays I would feel practically normal again, and then the cycle started all over again on Friday. In some ways I preferred to just be a hermit during chemo, but I quickly learned that any activities were best limited to Saturdays, Sunday mornings, and Thursdays; Mondays and Tuesdays were totally out.
  
  
• Nausea - Dr. Susan Love's Breast Book recommends that if you experience nausea, take your prescribed medications as instructed, don't try to "tough out". Just in case, I bought saltines, ginger ale, and a friend gave me some ginger candies in preparation for chemo. I truly lucked out and didn't experience any nausea at all.
  
  
• Hair Loss - Dr. Love's book also says that hair loss is always traumatizing, but the people who do the best are the ones who prepare for it. I'm not sure about that; I tried to prepare, and was still very affected. I was not given a prescription for a wig because my oncology nurse didn't think I would need it; she said I should expect thinning, but not total hair loss. Still, I prepared for the worst and bought a couple headcovers just in case. I felt better just knowing I had a plan, especially since a lot of people say that hair loss happened very dramatically, essentially overnight.
  
  My experience was different; the thinning was gradual. There were a couple days after my 4th treatment when my hair fell out at an alarming rate. The amount of hair that fell out increased every week, and after the 6th treatment, I became self-conscious. After the 7th treatment, it was undeniably noticeable, and I started wearing a hat. After the 10th treatment, I couldn't even stand to look at my straggly hair in private, so I shaved it.
  
  In the months after chemo ended, my hair slowly grew back, but 5 months out I was still wearing hats in public. I was 8 1/2 months post-chemo when I finally felt comfortable going out without a hat.
  
  
• Weight Change - Some chemo patients lose weight because of the nausea. I didn't experience any nausea, but since my chemo regimen included a steroid, I was told to expect weight gain. My medical oncologist advised me to not worry about losing weight while on chemo; it was more important to eat well and maintain good nutrition. I ended up finishing chemo about 5 pounds heavier than when I started.
  
  
• Neuropathy - I had what seemed to be an unusual situation; at least, no one could give me any straight answers. I did not experience any neuropathy while receiving chemo, but about a month after stopping chemo, while still getting Herceptin, I started to get numbness and tingling in my hands. These symptoms came and went, and were sometimes debilitating and painful. My medical oncologist prescribed a "water pill" in case fluid retention was a factor, I started sleeping with wrist braces, and my physical therapist gave me new exercises. It was entirely unclear what was causing the symptoms. Was it delayed neuropathy from chemo? Or the Herceptin? I was also on Lupron and exemestane, so was it related to fluid retention or menopause? Who knows. After about 8 months, the symptoms gradually subsided. Now, about a year after finishing chemo, I still have a very mild tingling in the thumb, pointer, and middle fingers on both hands, but it's like I've gotten used to it, it's just there. Of course, I'm curious to see if it ever goes away!
  
  

Bottom Line

Every person is going to have a unique experience with chemo. Reading about my experience may or may not help someone else, who will probably experience completely different side effects. No matter what your particular experience is, I think the following advice is universal:

• Drink Lots of Water - Just keep a water bottle with you at all times and drink, drink, drink! Yes, you'll need to pee more often.
  
  
• Rest When You Need to Rest - It's okay to lie down in the middle of the day, or go to bed right after dinner.
  
  
• Stay Active - Take a walk to get fresh air, and also to get your blood and lymph circulating. I aimed for 30 minutes a day, 5 days a week, but even 10-15 minutes a day is good. If that feels like too much, my physical therapist recommended doing just a little something any time you get up from resting; swing your arms, or go up and down the stairs a few times.
  
  
• Look Forward - Sometimes chemo can feel like a slog, like it's just dragging on and on. Remember, you are prescribed a regimen, and there is an end in sight!! You can do it! 

9/2/20: I Checked My Insurance Claims Online

Our insurance coverage year starts in July, so we paid the full deductible on the first appointment in the new coverage year. After that, insurance paid all claims in full. I will never change my mind: everybody deserves to receive medical treatment free from financial worry and stress. 

5/20/20: Medical Oncologist Appointment: $368

7/2/20: Maintenance Herceptin #10: $15,122.75, I paid $4,000

7/9/20: Physical Therapy Virtual Appointment #20: $372

7/10/20: Lupron: $571.16
7/24/20: Maintenance Herceptin #11 (Including Medical Oncology NP Appointment): $16,468.75
7/27/20: Echocardiogram Cardiologist: $243

7/27/20: Echocardiogram Hospital: $1,133

7/30/20: Physical Therapy Appointment #21: $348 

8/6/20: Cardio-Oncology Appointment: $288

8/6/20: Cardio-Oncology Hospital: $227

8/7/20: Lupron: $571.16

8/14/20: Maintenance Herceptin #12: $14,750.21

Total cost to date: $374,748.18
With insurance, cost to me: $8,254.63

7/30/20: Physical Therapy Appointment #21

My physical therapist spent almost a full hour with me today. 

She did a whole bunch of tests on my wrists, arms, and neck to try to learn more about the numbness and tingling in my fingers. Nothing in my neck seemed to cause any trouble, and she conceded that maybe the MRI isn't needed just yet. 

She was pretty confident that the problem is my median nerve, leading to some kind of carpal tunnel syndrome. 

I guess the big question is what is causing the carpal tunnel syndrome. At first, she still seemed to think there might be a musculoskeletal explanation, partly because the symptoms are symmetric. Also, I get intermittent tingling in my toes. It could be related to Herceptin, or Taxol. One possibility that seemed to make the most sense to me is the old idea of swelling; maybe the hormone therapy is causing fluid retention, which is squeezing some nerves in both my hands and feet. My hands and feet do look a bit puffy, but when the physical therapist actually measured my arms, they were not swollen compared to my previous measurements. 

She apologized for not being able to pinpoint the root problem. I appreciated her efforts, and completely understand the difficulty. I have so many medications and treatments, it's impossible to definitively link one thing to another! 

Anyway, she advised me to do a median nerve glide and two upper body stretches. I didn't schedule another physical therapy appointment; I figure I'll see how these exercises go, and I can always call if things get worse.

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.

6/12/20: Maintenance Herceptin #9 + Lupron

I arrived at 9:15. There was a new pexiglass barrier on the reception desk between me and the person checking me in. She handed me a surgical mask and didn't ask me for my name. Through all the crazy uncertainty of the last few months, my visits to the Cancer Center have been a surprisingly grounding routine.

While waiting for the port nurse, the social worker happened by. She greeted me by name, and I felt bad that I couldn't come up with her name right away. There's actually a thing called "chemo brain", a chemotherapy-related cognitive impairment. I think I have it. I've had trouble coming up with the right word since even before being diagnosed with cancer, so I can't blame chemo for all my mental fogginess.

But there are two things in particular I've noticed over the last several months. First, I am taking a lot longer than usual to read books. I find myself frequently re-reading sentences, so much so that it sometimes feels like I read every sentence twice in order to process it.

Second, I can't follow complex, fast-paced TV shows anymore. We recently watched the series Star Trek: Picard, and I had trouble keeping up, even my kids (in middle school) rolled their eyes at my questions. Then, inspired by Picard, I went back and re-watched episodes of Star Trek: The Next Generation. I specifically remember watching an episode maybe just a couple years ago, and being impatient with how slowly the story unfolded, how every detail was explicitly spelled out, as if the audience couldn't be trusted to make inferences. Watching the show now, I am practically relieved at how clearly events and dialog explain what is going on; the exact thing that used to bother me is now something that helps make the show enjoyable for me.

Anyway, the social worker was on her way to somewhere else, so we only exchanged pleasantries. I think it would have been nice to chat with her for a while, but I guess I don't feel "in need" of talking to her, so it's okay.

For the first time during this pandemic, the port nurse accessed my port (which used to be routine), instead of having the infusion nurse do it (presumably to minimize exposure risks). Even with the orange "Allergy" tab hanging off the "Screened" sticker on the front of my shirt, I had to remind her to use the Betadine instead of chlorhexidine. I think I've gotten more comfortable with speaking up for myself, and less indignant at this kind of oversight. I don't know if it's because I have general confidence in the port nurse, or if it's because I feel a sense of familiarity with her, or if I've just become more understanding that medical providers are human, too, and can make mistakes.

With my port accessed, I didn't have long to wait before being called into the infusion room. Apparently, the forehead thermometer was broken and sent off for repair, so the medical assistant was back to using an oral thermometer.

My infusion nurse came in pretty much as soon as I got settled into my bay. I told her all about the flare-up with my numb and tingly hands, and how doing nothing has gotten them back to baseline.

While getting me started on the Herceptin, she briefly wondered if maybe I should take a break from the hormone therapy, thinking it might be the cause of my hand troubles. I immediately felt uneasy about that option. Stopping my hormone therapy might give the cancer just the chance it needs to start growing again... Also, I pointed out that the first time my hands felt numb and tingly was before I even started exemestane. So maybe the exemestane has exacerbated the issue, but it definitely wasn't the initial cause. Still, that didn't rule out Lupron as the culprit.

I told her how I had found some web sites that link carpal tunnel syndrome with Herceptin. Like my medical oncologist, she didn't seem familiar with the connection, but didn't discount it either. I told her how I've been thinking that maybe if I can just get through my year of Herceptin treatment, then I'll also be almost a year out from chemo (so any residual effects from Taxol should be gone, too), and maybe the problem will just go away! At least I'll have fewer variables by then; after Herceptin is over, I'll only be getting hormone therapy with Lupron and exemestane.

My infusion nurse said the problem with my hands was clearly interfering with my life, and she suggested it might be time to see an orthopedic hand specialist. Maybe they can actually diagnose carpal tunnel syndrome, or rule it out. Again, I felt a little reluctance. That's yet another specialist, another referral, more appointments, maybe more imaging. I don't want to get bogged down chasing this symptom if there's a possibility it might just go away on its own in the fall? But I guess I don't want to risk the symptoms getting worse, either... Anyway, she said she'd touch base with my doctor about making a referral. I think I will be extra vigilant about not over-using my hands and arms, and I'll consider the specialist if my symptoms take a turn for the worse again.

I asked my nurse if she knew when my physical therapist would be accepting patients again. My medical oncologist had said that commonly one of the earliest treatments for something like a pinched nerve is physical therapy, so maybe it would help if I could see my physical therapist again, before turning to a hand specialist? But she didn't know when my physical therapist would be available.

Once my Herceptin was finished, I didn't have any wait at all to get my Lupron shot. I washed my hands and was out of the building by 10:45. Only ninety minutes total! I think that may be a record.

4/30/20: Still Managing Numb and Tingly Fingers

The baseline condition of my hands is that they are always very mildy numb and tingly. They always feel worse in the morning, more puffy and tight, and I have to open and close my fingers repeatedly to loosen them up. I also usually wake up with my arms feeling tight on the insides of my elbows (specifically, in that space between my elbow and biceps), and in my underarms, so I have to extend my arms and straighten them out, which also helps my fingers to feel better. My hands are especially sensitive to temperature now, and holding a cold drink or a hot dish makes my fingers feel super tingly.

Yesterday and today, I had a couple worrisome mornings. I woke up suddenly and my hands were VERY numb and tingly, to the point that it felt like something was squeezing some of my fingers so tightly that it hurt, like my circulation was being cut off. Yesterday it was both hands, but today it was just my right hand. Yesterday it was my middle, ring, and pinky fingers that felt squeezed. Today it was my thumb, pointer, and middle fingers. Both mornings this happened before I was ready to get up, so I was still so tired, I didn't want to get out of bed, but I sat upright and extended my arms and moved my fingers, trying to get my hands back to baseline. 

The feeling gradually wore off in about half an hour to an hour. Getting out of bed, walking around, and doing nerve glides definitely helped, but it was so hard to bring myself to do those things when I felt so tired, not ready to start the day.

Of course I've been brainstorming possible explanations for this new problem. I'm still walking, drinking lots of water, and doing nerve glides, but I will admit that I have recently been slacking off on my physical therapy stretches. I need to make a point to get back to doing them every day. 

Something similar, but to a much lesser extent, actually happened a couple weeks ago; I woke up one day with my right hand feeling noticeably more numb and tingly than baseline. That time, I wore my wrist brace the next night, and it helped. So, I'll try that again, too.

For the record, my hands continue to be puffy, my left more so than my right. It's hard to know for sure, but I still figure the root problem is water retention from Lupron (not exemestane, because all of this started before I started taking exemestane) causing my nerves to be pinched. I'm a little worried that it might be lymphedema, but I remember my physical therapist saying that lymphedema tends to get worse as the day goes on, and my symptoms always get better over the course of each day. I will definitely ask my physical therapist about it at my next appointment, once I can get that scheduled.

4/14/20: My Physical Therapy Appointment was Cancelled

The Cancer Center called to cancel my physical therapy appointment. They said they are cancelling all appointments until further notice, no re-scheduling until everything calms down and they are actually seeing patients again.

Thankfully, I think I'm in a relatively good place, so I don't mind the cancellation. The cording has not returned, and my range of motion is good. I admit, I have not been doing my strengthening exercises as instructed, so I do need to work on that.

I definitely want to re-schedule when it's possible, because my physical therapist has been a huge help in giving me ways to manage the numbness and tingling in my fingers. Also, I still have some puffiness in my hands, and it's reassuring having my physical therapist monitor me for lymphedema.

3/20/20: I Checked My Insurance Claims Online

As usual, these are the "Claim Total" amounts. We've already met our deductible for our coverage year, so the "You Pay" amounts were all $0.

2/7/20: Maintenance Herceptin #3 (Including Blood Work, Physical Therapy #18): $16,472.32
2/10/20: Medical Oncologist Appointment: $260
2/10/20: Medical Oncologist Hospital: $84
2/21/20: Lupron (Including Physical Therapy #19): $978.16
2/28/20: Maintenance Herceptin #4 (Including Blood Work): $15,840.75
3/4/20: Medical Oncologist Appointment: $260
3/4/20: Medical Oncologist Hospital: $147
3/9/20: Bone Density Test Hospital: $674
3/9/20: Bone Density Test Radiologist: $44

Total cost to date: $241,393.11
With insurance, cost to me: $4,254.63

3/20/20: Maintenance Herceptin #5 + Lupron

Everyone at the Cancer Center was wearing a mask, both patients and staff. Checking in, I was given a mask and asked 3 screening questions. I got a large sticker to place on my hoodie to show that I had been screened.

I had a 9:00 appointment to get my port accessed and blood drawn.

Regarding the coronavirus pandemic, my port nurse said that disinfectant wipes and hand sanitizers are being stolen from exam rooms. She didn't say if people were taking them for use in other parts of the hospital, or if individuals are taking them home, but she said she is locking hers up at night, since she needs them for use with her patients.

Upstairs, a sign in front of the infusion room said to check in at the information desk. There was no one at the desk, and since I had already checked in at the main reception desk downstairs, I figured I was all set and went in as usual. Turns out, with the increased security for the coronavirus, they want patients to wait outside until called. Yesterday they had someone standing guard, but no one was there this morning.

Anyway, the medical assistant took my vitals, then got me settled in a bay.

My infusion nurse came in around 9:45. She asked me how my hands were feeling, and I told her I've basically gotten used to the mild puffiness, numbness, and tingling that persists in my fingers. She looked at my hands and said she could see they are just a bit swollen, especially in the fingers. I mentioned that I sometimes feel shooting nerve sensations (no pain) when doing something that requires fine motor skills, like sewing a button.

We waited for the pharmacy to deliver the Herceptin, which got started around 10:15.

About the same time, my physical therapist checked in with me. I had cancelled today's appointment, so I really appreciated that she stopped by. She asked about my hands, and I told her the same things I told my infusion nurse. She asked if my arms felt heavy. (I think this is a symptom of lymphedema.) I said they don't, and the only time my arms really get involved is when I'm bending my elbows, like when I'm holding a phone to my ear, and then my whole hand goes numb, but feels better after I extend my arms again. She said it sounds like the residual swelling just continues to pinch some nerves. She reminded me that it's important to keep up with my exercises and walking. She also said that even if we can't have in-person appointments, she's available for questions, so if anything changes, or if I feel like I need new exercises, I can give her a call.

I got my Lupron shot, and my nurse handed me my visit summary printout. My port nurse had told me that the only blood test ordered was for vitamin D, but the results weren't back yet. My infusion nurse confirmed that I should keep taking the 2000 IU of vitamin D prescribed by my old medical oncologist.

I washed my hands in the restroom just outside the infusion room. I left the Cancer Center around 11:00, so today's visit was a little over 2 hours.

After I got home, I saw I had a voice mail message from my social worker. She was just checking in to see how I'm doing, especially in light of the pandemic, and wanted to make sure I know that I can still call her if I need anything. I appreciated the reminder.

I also checked my blood work online, and my vitamin D is still low, only slightly higher than when it was first checked.

3/16/20: I Re-Scheduled Some Appointments

During this COVID-19 pandemic, my state has closed all schools and banned all on-premise dining for restaurants and bars. There is a major push for social distancing, and as an introvert and homebody, I am happy to comply.

This upcoming Thursday, I was scheduled for a 6-month follow-up appointment with my NP in the Breast Center. I was planning on calling them to re-schedule, but even before I had a chance, they called me. They asked me to move my appointment out by at least 4 weeks, which is fine with me. Now it's in late April. 

When this appointment was first scheduled, I felt uneasy because 6 months seemed like a long time to wait to have a medical professional evaluate my post-surgery recovery. But now that it's been 6 months, and I've had my physical therapy appointments in the meantime, I think I'm in a stable place. I have no pressing questions or concerns. 

I decided, too, to re-schedule Friday's physical therapy appointment, which I also moved to late April. When this appointment was first scheduled, I was nervous about not seeing my physical therapist for a whole month. But now that the time has passed, I'm okay. I am relieved that my cording has continued to improve, so seeing my physical therapist doesn't feel necessary. Anyway, the point of the appointment was really just to check in, and to give me some new strengthening exercises. I'm comfortable just continuing with my walking, deep breathing, and stretching exercises for now. 

I also have 2 appointments that I did not cancel because they are time-sensitive. On Thursday I'm scheduled for an echocardiogram. I thought a lot about whether or not to re-schedule this appointment. I decided to keep it because the point of the echocardiogram is to make sure my heart is functioning properly while on Herceptin, and the results determine whether or not I should continue with Herceptin treatments. I am also keeping an appointment on Friday for both an Herceptin infusion and a Lupron shot, since those treatments should stay on schedule to be most effective. 

It does make me wonder under what circumstances the hospital might call to re-schedule those appointments... Interestingly, I did get a recorded message from the hospital, regarding my echocardiogram appointment, saying that no visitors other than patients themselves are allowed in unless medically necessary.  

Meanwhile, I've been doing a lot of research to try to figure out if I am in a "high-risk" category for COVID-19. I am NED, so there is no known cancer in me at this time. None of my medications are immunosuppressants. My immune system was compromised during chemo, but I finished that almost 3 months ago, and my blood work has already returned to normal. I did have a total of 6 lymph nodes removed, but that seems to be more of a concern regarding bacterial infections if the skin is broken on the side of the body from which lymph nodes were removed. In the Facebook support groups, though, a number of people insist that anyone with any history of cancer is immunocompromised... This article says people with a history of cancer "probably" do not have an increased risk, however, this study that analyzed COVID-19 patients in China says that patients with a history of cancer do have an increased risk. The study does not distinguish between different kinds of cancer, though, and I'm sure that must be factor. Still, I figure I should adopt an attitude of extreme caution, just in case.

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

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

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

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

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

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

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

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

2/21/20: 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.

2/10/20: I Checked My Insurance Claims Online

As usual, these are the "Claim Total" amounts. We've already met our deductible for our coverage year, so the "You Pay" amounts were all $0.

12/20/19: Medical Oncologist Appointment: $258
1/10/20: Physical Therapy Appointment #14: $393
1/17/20: Maintenance Herceptin #2 (Including Blood Work, Medical Oncologist Hospital, Physical Therapy Appointment #15): $15,858.27
1/17/20: Medical Oncologist Appointment: $260
1/24/20: Lupron (Including Physical Therapy Appointment #16): $964.16
1/31/20: Physical Therapy Appointment #17: $393

Total cost to date: $206,632.88
With insurance, cost to me: $4,254.63

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

1/31/20: 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.

1/24/19: 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: Maintenance Herceptin #2 + Medical Oncologist Appointment + Physical Therapy Appointment #15

Port Access and Blood Draw Appointment

I saw my port nurse at 11:00 to get my port accessed and blood drawn. I told her about the interventional radiologist not wanting to re-open and re-suture the port incision. She nodded her head decisively and said she agreed. I mentioned how I just hope they can get a clean closure when my port comes out, and she suggested I ask about whether or not a plastic surgeon could do it. I don't know how the scheduling works for these port appointments, but I guess it wouldn't hurt to ask, when the time comes.

Medical Oncologist Appointment

After a little wait, a medical assistant took my vitals, and I was taken to an exam room to wait for the medical oncologist who was filling in for my regular oncologist, who was out sick. The substitute doctor was young and friendly.

She asked me generally how I'm doing, so I jumped into two recent concerns I've had. First, a couple weeks ago, I noticed my legs feeling tired and stiff. Literally any and every time I shift my leg position, or stretch them out in any way, I think, "Wow, that feels good, I really needed that." I mean, maybe it's just aging, but it seems a bit much for 43 years old. The doctor said she's about my age, and kind of laughed at the idea of being considered "old". But the only thought she had was that maybe I was feeling some kind of bone or muscle or joint pain from the Lupron.

Also, just within the last few days, when I wake up in the mornings, my hands feel like they've fallen "asleep". That feeling passes after a few minutes, but my fingers feel numb and tingly and "thick" for quite a while longer, sometimes as long as a couple hours. This morning I got so nervous about my wedding ring getting stuck on a swollen finger that I took it off, with difficulty. Once I'm up and moving around, my fingers feel better, but a mild tingliness and "thickness" linger kind of on and off all day. The doctor thought the swelling sounded like fluid retention, again from the Lupron. She also suggested trying a wrist brace, like something used for carpal tunnel syndrome, to see if that helps with the numb and tingly feelings.

(Back at home, a Google search told me that not only is fluid retention a possible side effect of Lupron, but it's also a possible symptom of menopause, which is relevant because Lupron puts me into a chemically-induced menopause. Even more specifically, both swollen fingers and tingling in fingers could be symptoms of menopause.)

While doing my physical exam, the doctor of course noticed the unhealed port incision. I gave her a quick run-down of the history of the incision. To my surprise, she asked if I've considered taking the port out. I told her I had mentioned it to my regular doctor, who didn't think it was a good idea. But this doctor thinks that maybe the port itself, being a foreign object so close to the wound, is what's preventing the incision from healing properly. If I took the port out, I would finish my Herceptin treatments via a regular IV inserted into a vein. She agreed that with 5 lymph nodes removed from my right arm, she would want to be cautious about preventing lymphedema and limit the use of IVs to my left arm. I guess I'll think about it, but my first instinct is to just leave it alone. The port works, after all; it's just an ugly wound.

Finally, the medical oncologist prescribed the exemestane that my regular oncologist and I discussed at my last appointment. She made sure to mention that if the price is outrageous, I shouldn't pay it; I should call the Cancer Center, and they can help figure out a way to get the price down. Apparently, if the prescription has already been picked up and paid for, it's harder for them to manage.

At this point, I figured the appointment was over, but the doctor said she had one more thing to talk about. My regular oncologist is leaving the practice! Ahhhh!!! The substitute doctor said my usual doctor really is out sick (who knows...) but she's also taken another job somewhere else as an in-patient oncologist. Sigh.

She said she could take me on as a patient, and I said that would be fine. From this one appointment, I like her well enough, and I don't know any of the other oncologists at all. Looking back on the appointment, I kind of wish she had led with the possibility of changing doctors because if I had known, I think I would have approached the appointment differently. I definitely would have answered some questions differently. I feel like I was kind of dismissive and not as thorough as I would normally be in some of my answers because I figured, "This substitute doctor doesn't really need to know everything, I'll just give her the gist of it, and catch up my regular oncologist at my next appointment." Oh, well.

At first she said our next appointment would be in 9 weeks. I hesitated a bit; she noticed, and encouraged me to say what was on my mind. I said I've had regular oncology appointments every 2-3 weeks since I started treatment, so having 9 weeks until my next appointment seemed like a long time. Without a thought, she said, "Okay, let's make it 6 weeks." Well, that really made me feel better, that she was so responsive on the spot.

Targeted Therapy Appointment

When I got to the infusion room, the usual medical assistant wasn't at the front desk. I was directed to a bay, and I got myself settled with a warm blanket.

When my infusion nurse came in, the first thing she did was sit down and say that my social worker had told her about my mom. I teared up, and she was very sympathetic. I wasn't really sure how much I wanted to talk about it, so I turned the conversation to how I was sad about losing my medical oncologist. She said she knows the doctor I saw today, and she thinks I'm a good fit with her. She went on to say that she also knows the doctor who is coming in to replace my old oncologist, and she thinks I would be a better fit with the doctor I saw today than with the new doctor. So that was reassuring.

We talked about the future appointments I need to have set up. When she started to confirm that I like my appointments in the middle of the school day, I said, "Well...." and told her about my dad's daily radiation treatments. I said early morning appointments would be better now, so I could get back in time to drive my dad to his appointments. She was immediately sympathetic again, and said she'd do her best to get me appointment times that make my life easier.

I told her about the stiff legs, and the numb and tingly fingers. She didn't have much to say about the legs, but regarding the possibly swollen fingers, she said we should ask my physical therapist to take measurements of both my arms. I guess those baseline measurements she took before will be put to use after all.

My infusion nurse also asked for an update on my port incision. I told her about my interventional radiology appointment, and also about the new medical oncologist's suggestion to remove the port. The infusion nurse took a look at my left arm - confirmed that the whole arm did look puffy - and said it "wouldn't be a breeze" to use my veins directly, but it was doable. She said it's not something that needs to be decided right away; I can think about it for a while, and re-visit the idea later as the weather gets warmer (at which time I may want to wear cooler tops that would expose the incision site).

My physical therapist came in at 12:45, just before I got started on the Herceptin.

Physical Therapy Appointment

My infusion nurse and I got my physical therapist caught up on my numb and tingly fingers. She took measurements on both arms; from my wrist to my shoulder, every 4 cm, she measured the circumference, for a total of 11 measurements on each side. She had a printout of my previous measurements, and wrote down each new measurement alongside the old one; every single measurement was bigger this time.

So we knew for sure that both arms were a bit swollen, but she also wanted to see if one arm was bigger than the other, which would be a sign of lymphedema. She went back to her office to put the numbers into her computer, and she came back to report that my right arm is now 7% bigger than my left arm. That's still within the normal range, not quite the 10% that would indicate possible lymphedema. She said she even called up a colleague who is a lymphedema expert, and they agreed that given my description of the problem, it doesn't sound like lymphedema. Most notably, lymphedema tends to get worse during the day, whereas my swelling starts first thing in the morning, and gets better during the day. She said we'd keep an eye on the swelling, and she'd continue to do measurements.

(Later at home, I realized I never asked anyone what I should do about the fluid retention. Google tells me I should drink more water, eat less salt, and keep active.)

The physical therapist also worked on my cording. During this time, she told me how she has a blood condition, and my new medical oncologist is her hematologist. (Hematology/oncology is one combined specialty.) She talked about how much she likes this doctor, and it was definitely reassuring to know that this doctor is someone her colleagues would trust to manage their own care.

The Herceptin infusion finished first, and the infusion nurse let us stay in the bay until we were done. I left at 1:30, making my visit 2 1/2 hours.

1/16/20: I Checked My Insurance Claims Online

Since we've already met our deductible, the "You Pay" amounts for these claims were all $0. The numbers listed below are the "Claim Total" amounts.

11/22/19: Medical Oncologist Appointment: $258.00
12/5/19: Medical Oncologist Appointment: $258.00
12/5/19: Medical Oncologist Hospital: $84.00
12/6/19: Chemotherapy Cycle #10 (Including Blood Work, Physical Therapy Appointment #9): $7,473.23
12/11/19: Echocardiogram Cardiologist: $240.00
12/11/19: Echocardiogram Hospital: $1,133.00

12/13/19: Chemotherapy Cycle #11 (Including Blood Work, Physical Therapy Appointment #10): $7,535.23

12/20/19: Chemotherapy Cycle #12 (Including Blood Work, Medical Oncologist Hospital, Physical Therapy Appointment #11): $7,640.23
12/26/19: Maintenance Herceptin #1 (Including Blood Work, Lupron, Physical Therapy Appointment #12): $16,323.62
1/2/20: Physical Therapy Appointment #13: $393.00

Total cost to date: $186,964.59

With insurance, cost to me: $4,229.43

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.

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

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

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