3/28/23: Blood Draw and LFT Results

I have definitely crossed some kind of inflection point in my cancer journey. Up until now, I had gotten so used to frequent medical treatment that appointments felt typical and routine. Today, for the first time in a long time, I went to get my blood drawn in advance of a hepatology appointment next week, and I felt like it was an aberration from my schedule, an inconvenience. Even though my actual feelings were kind of negative, I figure it's a positive development overall, a sign that cancer is not such a central fixture in my day-to-day life anymore. 

Anyway, I looked up my results online, and my LFTs (liver function tests) are essentially back to my pre-Tamoxifen values. Yay! (Numbers in red were problematically out of range.) 

DATE       ALT  AST  AROMATASE INHIBITOR
03/28/23   19   20   Anastrozole
11/10/22   23   22   Anastrozole
08/16/22   26   22   Anastrozole
08/08/22   26   26   Anastrozole
06/10/22   46   34   Anastrozole
05/13/22   57   41   Anastrozole
04/15/22   78   56   Anastrozole
03/18/22   86   63   Anastrozole
02/18/22   79   65   Tamoxifen
02/08/22   74   51   Tamoxifen
01/21/22   62   53   Tamoxifen
12/23/21   65   49   Tamoxifen
06/10/21   25   22   Tamoxifen
12/23/20   18   18   Exemestane
07/24/20   19   19   Exemestane

Hopefully this means next week's hepatology appointment will be my last.

11/10/22: Medical Oncologist Appointment

My oncology appointments are getting more spread out, which is a good thing; fewer problems means fewer appointments. My last appointment was exactly 5 months ago, and my next appointment will be in about 7 months. After that, my oncologist said I can move to yearly appointments, ideally timed in coordination with my yearly breast NP appointments so that I alternate between the Breast Center and oncology every 6 months. My oncology appointments will continue to be scheduled with either my oncologist or oncology NP. I am acutely aware of how I used to feel when going 3 months in between appointments felt "too long", and it's interesting how I'm clearly in a new place now, able to welcome the longer time in between appointments.

But I'm getting ahead of myself.

I arrived 15 minutes early, guessing that I would need time for a blood draw, which I did.

Checking in at the registration desk, I felt a weird sense of sadness when I looked around and recognized nobody. I had gotten so used to seeing familiar faces that seeing no familiar faces at all made me feel kind of lonely. What's more, as I was getting my blood drawn, my old port nurse was in the room, too, but did not recognize me. Granted, I was masked, and back when I used to see her, I always wore a hat to hide my hair loss. Still, I did not say anything to her, for fear that she would still not recognize me even if I reminded her.

Speaking of masks, I'm very glad that medical facilities in my area still require masks, which I know is not the case across the country. Still, I will never understand why, 2 1/2 years into this COVID-19 pandemic, medical facilities continue to provide only surgical masks to staff and patients, knowing that they do not provide sufficient protection against airborne viruses. I was impressed that many, if not most, of the patients I saw were wearing high-quality N95 / KN95 / KF94 masks, though there was one guy who did not wear a mask at all. I think he was the escort for a patient who was wearing a mask, and I don't understand why he was not asked to wear a mask, or denied entry for not wearing a mask.

Anyway, during my blood draw, the phlebotomist had a difficult time filling the tubes. By now I well know the drill of having to drink extra water starting the night before a blood draw, but I just plumb forgot! I felt pretty sheepish about making the phlebotomist's job harder. 

As usual, I got my vitals taken, and was relieved that my blood pressure was fine, since it's given me a little trouble in the past.

I was glad to see my oncologist. I know she's not a friend, but she was a familiar face and has always been supportive. 

I asked if I would be getting an EKG today, and she seemed surprised at the question. I have learned to not hold it against my doctors when they don't know my whole medical file; I figure, they have so many patients, and only a few minutes to review each file before an appointment, so it's okay if they don't remember everything, as long as they think things through after I bring something up. In this case, I reminded her that the cardiologist who did my pre-surgery clearance said I should get an EKG every 6-12 months while on hormone therapy. Once she confirmed that note in my medical file, she went ahead and arranged for an EKG to be done at the end of the appointment.  

We then discussed my concerns. First, I said I'm still feeling the same very mild neuropathy in the first three fingers of both hands, presumably a remnant of chemo. At this point, I mostly ignore it, but it's there.

Then, I told her about various menopause-related side effects, presumably from taking anastrozole and having had my ovaries out. Stiffness in my fingers, hot flashes, and vaginal dryness are not new, and my doctor reminded me that if my side effects start to interfere with my daily living, I don't have to suffer, there are options, including trying another aromatase inhibitor called letrozole. 

I did tell her about a new concern, which is that my thumbs sometimes hurt now. They are stiff like the other fingers, but additionally, whenever I try to grasp or squeeze something (like a bottle), the thumbs hurt and feel weak. Sometimes it's mild and is just an inconvenience, but other times it's more severe, like I end up using both hands to hold a bottle to make sure I don't drop it. My doctor said arthralgia (pain in joints and muscles) is common with anastrozole, but there's always a chance it could be arthritis. Again, it came down to how bothersome the symptom is: if it's very problematic, I could get imaging to rule out or diagnosis arthritis, and/or get physical therapy to help manage the pain, and/or try letrozole and see if side effects improve. Otherwise, I can just monitor it and live with it. At this point, it's not so bad, so I figure I'll just put up with it.

Lastly, I mentioned the mild numbness and tingling in my right foot and leg that has been happening on and off since July. Sometimes it's just in the last 2 toes of my right foot, and it feels similar to the neuropathy in my first 3 fingers. Other times the numbness and tingling extend up my leg to some degree. Because the sensations are always concentrated in the same area, essentially in a line down the outside of my leg, my doctor thinks it's nerve-related, especially since I had a lot of similar nerve-related problems in the past. She suggested I add regular stretching to my daily routine, and see if that helps. 

After all the talking, I changed into a gown (top only) for a physical exam. Everything was fine!  

The doctor then stepped out and a medical assistant came in to do my EKG. She put one lead on each of my calves, one on each of my forearms, and 6 on my torso. She printed out the EKG on the spot and left it on the computer table for my doctor. I took a look and jotted down my QT/QTc numbers: 442/438 ms. Normal QT is 350-450 ms, and normal QTc is 360-460 ms, so it looks like I'm back in the normal range! 

When my oncologist returned to wrap up the appointment, she gave me the business card of the new social worker in the Cancer Center, in case I ever want to talk with her. Apparently, the amazing social worker who helped me through chemo retired.

Back home, I checked my lab results, and my LFTs and estradiol are both within the expected range! Yay! Maybe things are really finally settling down. 

6/16/22: Bilateral Salpingo-Oophorectomy (BSO) Surgery

I feel pretty fortunate that I've been so pleased with the care I've gotten from my hospital network, and today was no exception. It really felt like they were taking good care of me. My post-op nurse especially made me feel like I was in good hands.

We arrived at 6:00 AM for my 7:30 AM surgery time. Actually, we arrived a bit early, and saw 2 other cars with patients waiting inside. Apparently, the entrance doesn't even open until 6:00 AM. 

When I had my pre-operative phone call, the nurse had told me that I would not be allowed to wear an outside mask, and I'd have to swap it out for the hospital-provided surgical mask. Since I always wear a KF94, I was worried I'd have to downgrade my mask, a problem that has happened in other hospitals. But I just quietly put the surgical mask on top of my KF94, and nobody stopped me or said anything. 

I had a short wait, then was taken to a pre-op room. I changed into a gown, and a nurse took my vitals and put an IV in my left hand. She also had me take 2 Tylenol to get a jump on pain relief. I've been trying to steer clear of Tylenol to help my liver situation, but figured it'd be okay to take a few doses for surgery.

One of the anesthesiologists, as she read through my medical notes and asked me questions, paused and said one sentence that actually meant a lot to me: "I'm sorry you've had to go through all this." I've seen a LOT of healthcare workers outside oncology, including imaging technicians and staff from cardiology, hepatology, GYN, and my PCP's office. Every time my medical history is reviewed, the person is generally kind and professional, but they have always stopped short of being compassionate or acknowledging that all the cancer treatment and complications might actually be taking some kind of toll on me - until today. I don't blame them, and I understand the need to stay objective and even stoic, but just having a medical professional look at my history and validate that it is a lot for someone to go through was comforting. (I should mention that my entire oncology team has always shown compassion and understanding, that's just one of many reasons why I appreciate them.)

Anyway. I got the anesthesia. One second I'm sitting in the hospital bed, being transported to the operating room, not even feeling drowsy, and then bam, the next thing I know, I'm feeling groggy in a post-op recovery bay.

There was no clock in my pre-op room, so I don't know if the surgery started on time at 7:30 AM. The GYN surgeon had estimated 1 hour, but Ken said she called him around 9:15. I don't know if we started late or if the surgery took longer than expected, but she said everything went fine. Ken said the surgeon told him I'd be ready for pick-up in about an hour, but I didn't get discharged until roughly 2 hours later, around 11:15. 

When I woke up, I noticed right away that I didn't have a mask on. I figured it was okay because I was in my own bay, my nurse was masked, and she had set out some water, apple juice, and biscuit-type cookies for me. Once I finished eating and drinking, I asked for my glasses, took a new mask out of my bag at the same time, and looked at the clock.

It was just after 10:30 AM, so I think I must have woken up around 10:15 AM. I'm guessing I stayed under longer than the GYN surgeon anticipated. I was in the PACU (Post Anesthesia Care Unit) for about an hour, with a dedicated nurse.

There was an ice pack on my abdomen, covering the three incision areas. Also, there were inflatable sleeves on my calves, I assume to prevent blood clots.

The nurse warned me that my shoulders might hurt, a consequence of air being pumped into my abdomen during surgery, to make room for the surgeon to perform the procedure! I don't see how air in the abdomen affects the shoulders, but indeed, my right shoulder started to ache in the car ride home, and later my left shoulder started to ache too. In fact, the pain in my shoulders made it very difficult for me to sleep that night. This very helpful page about BSO surgery says the shoulder pain should go away in a few days, and walking around will help.

Also, presumably because of that air (actually, I later saw in my online medical notes that it was carbon dioxide) my belly felt bloated.  The bloating caused a lot of discomfort and was also a factor in not sleeping well.

On the drive home, I used a small pillow to cushion my abdomen from the seat belt, a trick the pre-operative phone call nurse had recommended.

The anesthesia definitely hit me harder this time than when I had my double mastectomy. I was still groggy and nauseated when I was discharged, and it took several hours to go away. I even threw up as soon as I got home. (The nurse had anticipated this and had given me a barf bag for the ride home, though it was labeled "emesis bag," so I learned a new word!)

Once I was home and settled into bed, I noticed the area around my left incision was bruised, which was a new development. The bruise was about 4 inches across and dark purple. The PACU nurse hadn't warned me about that, so I was relieved to find bruising mentioned on this BSO informational page. She did give me 2 cold compresses, which I promptly put to work over the incisions.

Walking is difficult, but since walking helps the recovery process in many ways, I've been making an effort to get up and putter around the house a bit. 

After a while, I noticed an increase in mucus in my lungs. Moreover, it's hard to cough up because coughing makes my incisions hurt. I found this web page that says anesthesia can hamper normal breathing and cause mucus to build up in the lungs. Moving around and coughing should help. Interestingly, both the Memorial Sloan Kettering Cancer Center and the WebMD web sites mention an "incentive spirometer," but I didn't get one. I found this laparoscopic oophorectomy informational page that mentions "breathing exercises", then finally found a related page describing specific breathing, coughing, and leg exercises that I can do.

Overall, I'm doing alright. I am taking prescription-strength ibuprofen (600 mg), which keeps pain at bay as long as I take it on schedule. I've also been taking prescription-strength generic Colace (100 mg) to help with constipation. I can walk around slowly, standing a little hunched over. The only other thing worth mentioning is that it feels kind of hard to talk, like I have to talk slowly; I figure it's somehow related to the bloating and/or mucus in the lungs, and needing to take deep breaths.

6/10/22: Last Lupron + Medical Oncology NP Appointment + Phone Calls

I got my blood drawn. 

A super friendly new-to-me medical assistant took my vitals, then brought me to an exam room for my EKG. I changed into a gown (top only), and the medical assistant put a bunch of electrodes on my arms, ankles, and torso. I had almost forgotten that getting an EKG means more time spent attaching and detaching the electrodes and changing my clothes than actually getting recorded. 

Next I saw my medical oncology NP. Usually I have a long list of concerns, but today it just felt like we were touching base on a few known issues. No change in my side effects (slight neuropathy in first 3 fingers on both hands, tightness in joints), and they aren't so bad that they disrupt my activities of daily living. Actually, I've noticed I haven't had as many hot flashes lately, but I forgot to mention that.

My NP was very sympathetic about my upcoming surgery, but I assured her that I understand and accept the rationale, and I'm okay with it. It actually felt a little comforting to know that she was treating the surgery like a Big Deal, because I do think both my usual GYN and the GYN surgeon gave the impression that the surgery is No Big Deal. In a way, that's a good thing, because it implies that to them, the surgery is commonplace and nothing to worry about. Still, surgery is surgery, and I'm getting organs removed from my body!

My NP reiterated what my GYN surgeon has already said, which is that after the surgery, I should not expect to experience many new symptoms of menopause since my body has already gone through the effects of losing estrogen. 

During this appointment, some of my blood work results came in, and my NP was super excited to show me that my ALT and AST (the liver function tests) went down again! Not only that, but the AST actually fell to within normal limits!! Yay!! I've been making a real effort to exercise more, drink more water, drink less alcohol, eat better, and stay active after eating, but given the steady rate of decline of the LFTs, I'm guessing none of that really matters as much as the simple fact that I stopped taking Tamoxifen. But it's not all for nothing, because my NP commented that I look like I lost weight! I did lose something like 3-5 pounds, not enough to really be noticeable, but it's something. 

At the end of the appointment I asked if I was "all set" with that "medical clearance" the hospital wanted, but my NP didn't seem to know what that was all about. She wondered aloud if I should get a chest X-ray, and then decided it wasn't necessary at my age. I left feeling a bit uneasy about whether or not I was "all set" for surgery next week. 

I almost forgot that I still had to get my Lupron shot after this appointment. In a way it felt a little bittersweet seeing my treatment nurse for probably the last time. I mentioned that next week's surgery would make this my last injection appointment, and the nurse expressed encouragement and wished me luck. I was feeling a bit emotional about never seeing this nurse again, but I also felt silly because the nurse was pretty matter-of-fact about it, so I just kept the sentimentality to myself and cheerfully told her I've enjoyed talking with her at my appointments. 

On my way out, I scheduled my next appointment with my oncologist. It was supposed to be in 3 months but the earliest available was in 5 months. 

Back at home, I was still feeling unsettled regarding that "medical clearance", so I made some phone calls. First I called the hospital's Pre-Admissions Testing. They said if I need medical clearance, it's something I get from my PCP. I explained that the pre-operative phone call person said it could go through my oncologist, who I was already scheduled to see, but when I asked my oncology NP today, they didn't seem to know what it was all about. So then they said I should call the office of the doctor performing the surgery to find out if I'm "all set" or not. So I called the GYN surgeon's office, and the surgery coordinator did not know what kind of "medical clearance" was needed either! She said she didn't know if I was "all set" or not, but she'd put in a message with the doctor and get back to me next week. I expressed concern that this all might not get resolved in time for my surgery, and the surgery coordinator said, "We'll get to the bottom of this. Don't worry." So okay. I guess I won't worry! (Of course I will, but I will tell myself not to.)

Oh, one last thing. My blood work came back showing my estradiol as <5, which is where it should be. My NP said maybe they'd check it one more time after surgery, just for fun, but once the ovaries are out, the whole point is that we won't have to worry about the estradiol anymore. 

5/13/22: Lupron + Blood Draw and Results

After more than 2 years of monthly Lupron appointments, if the BSO surgery goes according to schedule, today will be my second-to-last Lupron injection. 

During check-in, the receptionist who is always extra friendly to me (not the original receptionist who always recognized me, who's long gone by now) was training a new person, and I waved to another familiar receptionist. The new hire remarked that I appeared to be well-known in the hospital, and I explained that I've been coming in at least once a month for almost 3 years! Ironically, I then told them about my upcoming surgery, which will put a stop to my monthly visits. The extra friendly receptionist was happy for me, that I might finally reach a point of stability in my treatment, with no more new interventions.

I got my blood drawn, and then went upstairs for the Lupron shot. The nurse who gives me the shot is not always the same, but most times it's the one who was trained by my old infusion nurse. I like her because her shots are the least painful - sometimes even pain-free - and she's always easy to talk to. She saw in my medical records that I have a surgery coming up, and I told her how the surgery means I won't be coming in for shots anymore, after the next time. She, too, expressed support and wished me luck. 

It's funny, you do something long enough, and you feel a sense of loss, even if that thing wasn't exactly something you enjoyed. I know I will appreciate not having to schedule my life around monthly appointments, but at the same time, it's a big change to my routine. In a good way, of course, but still a change, and I will miss the kindness and support of all the people I've been seeing regularly.

The good news is that my LFTs have continued to go down. Yay! They are now the lowest they've been while still being "high". (My first "high" results came in December 2021.) I don't know if lower LFTs automatically means the steatosis is also improving, but I certainly hope so. I will ask my hepatologist when I see him in August.

Meanwhile, my estradiol is back down to <5, which is where it should be. I guess it doesn't matter, though, since we know that it fluctuates and can get "too high". So it just happens to be low this month, but I don't think that will change my BSO plans. 

7/3/21: (1.5 Years Post-Chemo) Hair Update

I can't believe it's been 1.5 years since I finished chemo. It feels much closer. I am finally now - 1.5 years later - starting to feel like "myself". 

A huge part of that is because my hair continues to grow in. At first I was worried that it was coming in too thin, because I still had a "bald line" in the back similar to when I was losing my hair during chemo. Thankfully, as my hair gets longer, it's also been coming in thicker.

6/10/21: Lupron + Medical Oncologist Appointment

I expected to have blood drawn today to check the estradiol number, but there wasn't an order for it when I checked in. As it turned out, my oncologist decided during my appointment that we should check the estradiol again, so I got my blood drawn after seeing the doctor, before getting my Lupron shot. The results should show up on the online patient portal later. 

During my appointment, I told my oncologist about one new concern. About a month ago, I noticed that a spot on the right side of my torso felt bruised, but when I looked, there was no bruise. Poking around, I could feel a round bump that felt tender when touched. Was it a bone? An organ? Was it something to worry about? I laid down on the examing table, and the doctor spent a good amount of time feeling around. She said she definitely could feel the bump, but she wasn't sure what it is! 

On one hand, it's disconcerting when the doctor doesn't know something. On the other hand, I do appreciate her honesty. She said it might be a "floating rib" - one of the lower couple ribs that don't connect to anything in front - and then she Googled it right there in the office. She suggested we keep an eye on it, and if it gets worse or continues to be worrisome, maybe she'd order a CAT scan. But in the meantime, I should try not to poke around at it, which might be aggravating it unnecessarily.

I told her that I am aware that maybe my worrying has a psychological component. I've been hypervigilant about my body for a couple years now, first in finding the breast cancer myself, then in trying to keep tabs on the many side effects of treatment. After all this time, it's like I'm looking for things to feel wrong. Plus, the typical aging process and Lupron-induced menopause are confounding factors, reminding me that I shouldn't even expect my body now to feel like it did pre-cancer. Anyway, my oncologist said all that sounded perfectly normal, and I appreciated that she didn't make me feel like a hypochondriac.

Anyway, I also reported that I've been getting hot flashes again. I hadn't been getting them for a while, but they're back, and I wonder if the hot weather is a trigger. Interestingly, I think eating sugar is a trigger; at least, I seem to get hot flashes any time I eat the fudge I got for Mother's Day. 

For the record, the first three fingers on both hands still feel very, very mildly numb and tingly. I never notice it anymore unless I tap my thumb and fingers together, so it's just something I've accepted as permanent. My joints still feel stiff sometimes, especially in the mornings, but it doesn't interfere with my daily activities, so it's also not something I worry about anymore.

She said since there aren't any treatment-related issues, we can stretch my next appointment out to 6 months instead of 3. I remember when 3 months between appointments made me feel a little nervous, but now I think I'm okay with it. I'm ready to put more distance between me and cancer treatment. 

Finally, I got my Lupron shot. The nurse was one I've had before, but the shot felt like it was in the wrong place! The location was much higher than where it's usually given, closer to my hip than actually in my butt. I didn't say anything, but as soon as I got home, I Googled, "What if a shot is given in the wrong place?" I found this Quora entry, with one answer that includes a helpful image showing the safest place in the butt for a shot. Apparently, the place I got the shot today looks to be more squarely in the safe area, all the other shots were probably on the low side!

12/20/20: (1 Year Post-Chemo) Cancerversary

One thing I did not expect going into this whole cancer journey was having so many new dates seared into my memory. June 17, 2019 was the day I was diagnosed, a.k.a. the day I found out my boobs were trying to kill me. August 23, 2019 was the day of my double mastectomy, a.k.a. the day I had to start figuring out how to accept being permanently disfigured. And December 20, 2019 was the day I finished chemotherapy, the end of the most grueling part of active treatment.   

It doesn't really feel like it's been a whole year since I finished chemo. This past year has been such a mess with the coronavirus and the presidential election, time didn't really seem to pass in a normal manner. 

Mostly I can't believe that even after a whole year, my hair is still so short. I still don't like it, and I still don't feel like myself.

As with all my other cancer milestones, I don't really know how I feel, exactly. My short hair, flat chest, and persistent side effects of hormone therapy are daily reminders that still make me feel like a cancer patient. The pandemic is making this time of year feel more somber than festive, but I have to admit that I don't mind not having any big holiday gatherings; I am pretty sure that if we were expected to go to social events and be merry, emotions would be masked, and participation would feel obligatory. There's also the added weight of the anniversary of my mom's passing (December 29), so really, I am very content to stay home every night and enjoy some peace and comfort. The extra quiet of this year's holiday season suits me just fine.  

How to Help a Friend with Breast Cancer

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

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

Really Try to Understand Them

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

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

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

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

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

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

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

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

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

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

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

Give Them Practical Gifts

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

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

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

Spend time with them throughout their active treatment.

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

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

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

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

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

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

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

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

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

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

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

Provide household assistance.

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

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

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

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

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

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

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

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

10/1/20: Port Removal

The port is out! 

It's covered with dressing that I can't take off for 2 days, and I'm told there are steri-strips under that, so it will be a while before I can tell what the scar will look like.

Ken drove me into the city for this appointment, and the first thing we noticed is that the mask compliance rate of people walking around in the city is WAY higher than in our suburban hometown.

Ken walked me into the hospital but then waited outside for the duration of my appointment.

The area I was brought to in the interventional radiology department was a big open space with a nurse's station in the middle and bays of hospital beds along the perimeter, separated by curtains. A nurse took me to a bed and had me change into a gown. She took my vitals and then gave me an IV. It took her two tries! The first time she stuck the needle in, poked it around, said it's not working, and then pulled it out. She then tried again in a different place, and it worked, though there was some bleeding. I've had several IVs by now, and that's never happened before, but I just shrugged it off.

A physician's assistant came to speak with me, and it was the same one I saw in January. He was easy-going and more of a jokester this time, which actually came across as less personable to me, like he was using the humor as a kind of shield. I told him about both of my concerns - the leftover non-dissolveable stitch and the messiness of the ugly scar. I felt like he was dismissive about both things. Of course he said, "If there's something in there we'll take it out," and, "We'll do our best to make it look nice," but they just felt like "the right thing to say," I didn't get a sense that he really cared.  

I was rolled into the operating room, where 4 nurses busied themselves getting me ready. They were all very nice. I was pleased that multiple people along the way took note of my chlorhexidine allergy, and one of the nurses said right away that they would use Betadine instead. 

The doctor came in after I was already prepped, and he didn't introduce himself to me at all. I was reminded that I actually liked the doctor who performed my port placement; he was friendly and he explained what he was doing while he was doing it. This doctor didn't say anything at all; I hope that means he was concentrating on the procedure.

I was given some kind of sedative for the procedure, so my mind was foggy, but I think I did try to mention the leftover stitch. I have a vague notion that I said something just as the doctor was getting started, so that I could be sure he was aware of the stitch, but I can't remember the details. I think I dozed off during the procedure. As he was finishing up, I asked him if he found anything, and he said no. Maybe it wasn't a stitch after all? Maybe it was, and it's still in me? It occurs to me that maybe he would say no even if he did find something, like maybe they shouldn't admit that they left a stitch in me for almost a year.  

The procedure went fine in that the port was removed and nothing went wrong, but I didn't leave feeling like my concerns were addressed. I think I would have gotten a more satisfying experience at my local satellite hospital, but I still think if I end up having any kind of healing problems later, if the port was removed by the same doctor as before, I'd blame him. So, I don't regret going to the main hospital for this procedure; this way, if I have problems later, I won't feel like it's anyone's fault, it's just what happened.

Anyway, I was given some ginger ale and graham crackers while waiting for some of the sedative to wear off. After maybe 15-20 minutes, they had me call Ken, and someone walked me to the main entrance to meet him. The whole visit was less than 3 hours.

Every person I encountered during my appointment, when they found out I was there to get my port removed, gave me a hearty, "Congratulations!" But somehow, instead of wanting to cheer, I felt like crying. I don't know if it's a sense of relief that a big part of my treatment is over, or what, but I do feel kind of discombobulated. In a weird way, I sort of feel the same as I did when I got the port placed. Like something has changed, and something else is about to start, and I don't know what it's going to be like. 

The area where my port was is sore and stings a little. Maybe I will take a Tylenol before bed tonight.

9/9/20: The Hospital Called Me

My port removal is scheduled for October 1!

At first it was scheduled for September 25. I asked if it's possible to know which doctor I would be seeing, and the scheduler said no, there are multiple doctors on duty. She asked if I had a request to see a particular doctor, and I explained how I actually have a request to NOT see a particular doctor. She said this doctor is scheduled to work that day, but she could put in a note for me to see someone else. That seemed like it had the potential to get awkward, so I asked if I could be scheduled on a day that this doctor isn't even working. 

Now I just have to hope that the procedure goes well, and the final incision heals cleanly. I have some anxiety over the possibility of having another poor outcome, and I keep trying to tell myself that beyond asking for a new doctor, there's nothing more I can do about it. It's out of my hands. 

I know I should try to focus on the good news, which is that my infusions will soon be ending! But part of me is not sure how to feel about that. Yes, it's something to celebrate for sure. It will be nice to not have an appointment every 3 weeks! But it also feels kind of weird. After more than a year of active treatment, I'll have to settle back into some sort of normal life.

I think a lot about this meme, which I posted before at the start of my treatment. It seems like there should be a sense of empowerment and completion, but what I'm feeling is more like disorientation, and helplessness.  

Practically speaking, I am looking forward to being off Herceptin because I'm hoping it will lead to an improvement in the numbness and tingling in my fingers and toes. Or if not, at least I'll be able to eliminate one possible cause for those symptoms. 

Maybe I don't feel that sense of completion because even though I can check off surgery, chemotherapy, and targeted therapy, the hormone therapy part of my treatment is still on-going. 

Well, maybe I just shouldn't think about it too much. I don't need to be spending time analyzing myself when there's plenty of other things for me to think about, e.g, the kids starting school, the pandemic, the upcoming election!

9/4/20: (8.5 Months Post-Chemo) No More Hats!

For the first time since last November, I went out today without a hat!!

It felt amazing. I really felt just a little more like myself. 

I interacted with 5 people at my appointment today, and 3 out of 5 noticed and complimented my hair. Of course they will say something positive whether it looks good or not, but it just felt really great to be one step closer to having chemo behind me. 

My last chemo was December 20, so apparently it took over 8 months for my hair to grow long enough just to be held in place by a headband. Even now, without the headband, my hair pretty much sticks straight out. I am grateful, of course, that it is coming in thick and black!

The headband in the photo has pink flowers, it's my daughter's and not exactly my style. It fits well and stays in place, so I went ahead and ordered a few more simple headbands from the same business.

Yay!!

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

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

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

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

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

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

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

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

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

6/17/20: Cancerversary

Well, a year ago today, I was diagnosed with cancer.

Just a little more than one year ago, life was pretty normal. There was still a chance that my cyst was just a cyst, nothing more. But in the year since 6/17/19, cancer has been front and center. My mother's passing, my dad's cancer, and COVID-19 have all made mortality loom even larger. What a year.

It's been a year of regular, sometimes weekly visits to the Cancer Center. A year of doctor appointments, treatments, and physical therapy. A year of surgeries, medications, and side effects.

I was up late and typed up a long post, but upon re-reading, I was basically just wading knee-deep in the pity pool. So I deleted it. I mean, suffice it to say, having cancer is no fun.

Some people have tried to be encouraging by saying things like, "Now that surgery / chemo is over, you can put cancer behind you and move forward!" I can't speak for everyone, but for me, it doesn't seem like having cancer is something I'll ever be able to "put behind me." Side effects and missing boobs are a constant reminder. Six months after my last chemo, my hair is still too short for me to go out in public without a hat. (I am really so relieved that COVID-19 provides the perfect excuse to stay home and not be seen. Dodging Zoom calls takes a bit more effort.) Even after my Herceptin treatments end this fall, I'll still be getting daily and monthly hormone therapy indefinitely. And, of course, there is always the fear that the cancer will return.

Okay, I guess I'm still in the pity pool. Don't worry, I'll get out eventually. But sometimes you just need to sit in it for a while.

5/20/20: Maintenance Herceptin #8 + Medical Oncologist Appointment

Yesterday, the Cancer Center called to pre-screen me for today's appointment. Over the last few months, the number of COVID-19 screening questions has grown, and the questions have evolved. At first, they asked only if I'd travelled to China in the last 2 weeks, then they asked if I'd travelled internationally, and now they ask if I've left the state. They used to ask if I'd had a fever or respiratory symptoms, and now they also ask about other possible symptoms, like if I've lost my sense of taste or smell. And in terms of exposure, not only do they want to know if I've been in contact with anyone who has been diagnosed with or tested for COVID-19, they also want to know if I've been in contact with anyone who just shows symptoms of COVID-19.

I had an 8:45 appointment to get my port accessed and blood drawn, but around 9:00, the port nurse came out and said she had to check with my doctor because she didn't see any lab orders for me. Meanwhile, a medical assistant took my vitals.

It turned out that my oncologist did not require any blood work today, which threw me off a little because I was hoping to see if my vitamin D levels have improved. (The last time I checked, they were slightly better, but still below normal range.)

In the exam room, the medical assistant let me know that the doctor was running late. I had a book to read, so I didn't mind the wait.

The doctor came in around 9:45. We started out talking about how I've been feeling emotionally, and it occurred to me to say, "I bet you hear this kind of stuff from your patients all day long, just the same type of complaints from different people." She told a story of something that happened to another patient, along the same lines of what I had been saying, and it really helped in that "you are not alone" type of way. She said some supportive things, and it really felt strengthening.

I asked if my vitamin D deficiency was something I should be worried about. My vitamin D number is in the mid-20s, but normal range is 30-60. She said if my number was in the teens, then that would be concerning, and she might temporarily prescribe a weekly uber-dose of vitamin D to get the number back in the normal range. But with a number in the 20s, my 2000 IU supplement should be enough, plus we're coming up on summer, and the added sun exposure should help, too. She said she'd check my levels next time.

I also asked about my most recent echocardiogram. I checked my results online, and the primary number of interest, the ejection fraction, wasn't listed exactly. My first report had an ejection fraction of 63%, and the second report said 61%. This third report said only >=55%, with a note saying it was "visually estimated". The ejection fraction is affected by Herceptin, and some people have to discontinue treatment if the number gets too low. My doctor didn't know why this report didn't have an exact number, and she said she'd look into it. She pointed out that the range might not be informative enough; if my ejection fraction was actually as low as 55%, even though that's in the acceptable range, the precipitous drop would be concerning.

Then, I gave a full report on what's going on with my hands. She said the fact that symptoms get worse when I'm lying down makes her think it could be a pinched nerve in my spine. Apparently, sometimes one of the first things to try for a pinched nerve is physical therapy, so it's too bad I'm not able to see my physical therapist because of the coronavirus. She asked if doing yoga was within the realm of possibility. I said I used to do it a long time ago, so it's possible... She suggested doing yoga 3 or 4 times a week between now and my next appointment, and if there's no improvement, she might want to order an MRI.

There are medications that can be used to address numbness and tingling, but I said I am not too keen on taking medication for a side effect of another medication. I'd rather try to manage the symptoms in other ways.

I asked if she thought my symptoms might be related to Herceptin. She didn't seem familiar with a link between Herceptin and carpal tunnel syndrome, but she also said she "never says never", because the range of reactions to medication is so broad; it's not impossible. She said there's a stronger connection between Taxol and neuropathy, and it's possible for neuropathy to start even after finishing Taxol. In fact, she said that she usually advises patients to allow a full year for the effects of Taxol to subside. Either way, if I can just push through until next fall, maybe things will get better after I'm done with Herceptin, and with chemo farther behind me.

I also described the stiffness I've been feeling in my legs. Recently I've noticed that in the time it takes me to cook dinner, my legs feel so tight that when I sit down, it's a huge relief. But then, if I sit for even just a few minutes, standing up takes effort, and I feel a lot of discomfort in my legs for the first few seconds, until I'm able to walk it off. My doctor seemed confident that these symptoms are a side effect of the exemestane. I remember I first reported this symptom before I even started exemestane, and at the time she said it could be the Lupron. If it's hormone-related, maybe it's both. It's definitely gotten worse, so maybe the exemestane exacerbated it. In any case, she recommended doing leg stretches, which could also be accomplished with the yoga. Also, if the stiffness gets to be too much, I could try taking ibuprofen to relieve it.

Up in the infusion room, around 10:15, I got settled in a bay, and was immediately annoyed with myself because, despite having written down all my questions, I forgot to mention one of the symptoms that I thought was important. I felt like maybe it wasn't worth mentioning now, but my infusion nurse said if it was important to me, then I should say it. I appreciated that reassurance so much. I told her about the couple incidents when I woke up feeling like my fingers were being squeezed to the point of my circulation being cut off. She said she'd put it in her notes so my doctor would be aware of it. Also, she suggested wearing the wrist braces every night.

We discussed upcoming appointments, and she said my next oncology appointment would probably be with my doctor's NP, and after that, my appointments would alternate between the doctor and the NP. She must have sensed I was caught off guard by this news, because she then listed a series of positive things, like she was trying to allay my concerns. She said she thinks I will really like this NP, that it will be easier to get appointments (I won't have to move my infusion appointments from Fridays to Wednesdays, like I did today, in order to accomodate the doctor's schedule), that it's always good to have another point person for communications with the Cancer Center, and I can always request to see my doctor, if I want. I am actually pretty comfortable with the idea of seeing an NP, but I was feeling like I was just getting comfortable with my new oncologist, and now I'll have to get used to yet another provider. It felt like another "baby bird" moment. It's all fine. Just another step in the process.

I started the Herceptin just after 11:00. The infusion took the usual 30 minutes, then the infusion nurse de-accessed my port, I washed my hands in the restroom, and I was out by 11:45. So, 3 hours total, not including driving time.

5/19/20: (5 Months Post-Chemo) Still Wearing Hats

Thanks to this global pandemic, I'm actually quite content to not have any social outings at which I might have to explain why I am still covering my head 5 months after I finished chemo. My hair is growing in, but it's so thick and straight that it grows literally outward, like each hair is radiating from my head. Sure, it's funny. But I hate it. And I'm much too vain to let others see it. Here, I'm willing to post only a side view.

When I wear a hat, it flattens the hair, but the hair gets flattened every which way, so it just ends up looking like bed-head.

Besides the rimmed hats I got from Headcovers Unlimited, I've also been wearing slouchy beanie hats around the house. Those knit hats are getting too warm for spring, though. I'll need to find something cooler for the summer. Still, what with the pandemic going on, I'm actually relieved I don't need to worry about being seen too much.

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

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

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

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

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

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

4/10/20: Maintenance Herceptin #6 + Social Worker Phone Call

Yesterday I received a phone call confirming my appointments today. They pre-screened me with the usual 3 questions, but also said I would be asked the same questions again when checking in. I asked if I should arrive wearing my own cloth mask (wondering if this might help the Cancer Center preserve PPE); she said I can if I want, but I would still be given a surgical mask to wear when I arrive.

I figured there's no need for a cloth mask just for the drive in, so I checked in without a mask and immediately put on the surgical mask they gave me.

The person checking me in recognized me and didn't ask for my name. She said my appointment with the port nurse, who accesses my port, was cancelled. I wondered if maybe the appointment was cancelled in an effort to minimize person-to-person interactions, since the infusion nurse can access my port, too.

Usually I am given a wristband with my name, birth date, and medical record number, and also a second wristband to show that I have an allergy (to chlorhexidine). Today, instead of putting the wristbands on my wrist, the wristbands were trimmed (to cut the straps off) and attached to hang off the sticker that identifies me as having been screened. They were visible on the front of my shirt, presumably to eliminate unnecessary touching.

I went directly to the second floor, but instead of going straight into the infusion room, I waited outside in the waiting area until I was called.

Around 9:30, the medical assistant called me in. I know the staff is under more stress these days, so I brought them a big bag of Lindt truffles. (I did the same at my last visit, too.)

She took my vitals and brought me to a bay. I see the same medical assistant at almost every visit, and I appreciate how she always helps me settle in with a pillow and a warmed blanket. With the check-in person knowing my name, and the medical assistant giving attention to my preferences, coming to the Cancer Center actually makes me feel seen and cared for.

My infusion nurse came in around 9:45. We chatted first about the struggles of adapting to this crazy new life, both at work for her and also at home, juggling at-home child care and online schooling.

She asked about the tingling in my hands. I told her how having mild numbness and tingling in my fingers is like my new baseline. I noticed this week that if I'm not diligent about staying active (stretching, walking, and doing nerve glides), the numbness and tingling (and tightness and puffiness) can still get worse, but not as bad as before. Currently, even when it's "bad", I don't feel any weakness or pain, so that's still an improvement.

About 10:00, my infusion nurse asked if it would be okay to allow a new nurse to access my port. I met this new nurse last time; she's new to the Cancer Center but is an experienced nurse coming from an inpatient position. She needed to be "checked off" for doing a port access. So that's why my port nurse appointment was cancelled! It was fine with me, and also kind of interesting to hear them talk through the process.

My infusion nurse also wanted to talk about my Lupron injections. Looking for ways to reduce patient visits, she asked me if I would be comfortable giving myself the monthly shots at home! She made it clear I can say no, that it's just part of her job to ask. She said she's not even sure if my insurance would allow it; asking the patient whether or not to pursue this option was just the first step. She said a pharmacy would deliver the medication to my home, and she would train me today on how to do it. The injection is usually given in my butt, but if I did it myself, I would use my thigh. She said, too, that Ken could be the one to give the shot, if that was a possibility.

My initial reaction was to say no, but I felt I should give it a fair thought before responding. I asked what could possibly go wrong? She said if I make a mistake, it's possible the medication might not get fully injected, which means it wouldn't be as effective. Or, if I don't clean the injection site properly, it could get infected. I definitely don't want to do anything that might increase my chances of needing even more medical intervention. And I didn't say this at the time, but in retrospect, I also don't want to take on anything that would add to my anxiety, and I think trying to self-inject my Lupron would produce more anxiety than going out for an in-person visit.

I asked if I could get the 3-month dose of Lupron, which I've read about. She basically said I wasn't prescribed the 3-month dose, which tends to lose efficacy towards the end of the 3 months. I don't know under what circumstances the 3-month dose is acceptable (maybe it's more commonly used for other purposes other than breast cancer), but in my Facebook support groups, monthly doses do seem to be the norm.

My infusion nurse has always been very observant, and she said that since I showed hesitation, I shouldn't do it at home. I was relieved, and she was completely understanding, adding that giving herself an injection wouldn't be easy even for her. The other nurse who accessed my port agreed. I don't know if they meant it, but I appreciated the reassurance. Anyway, they are still trying to reduce person-to-person interactions, so she instructed me to call her from my car when I arrive next week; she said she could check me in herself, bypassing the reception desk.

I started the Herceptin at 10:45.

Around 11:00, my social worker called my cell phone. She said she is not visiting patients in person (to maintain social distancing), but wanted to check in to see how I'm doing during this whole pandemic. It was hard to know where to start. I said I feel lucky in a lot of ways, compared to what I know others are going through. Everyone in my household is able to stay home and isolate. My kids are old enough to be self-sufficient with their school work, but not too old that they are rebellious and giving us a hard time about not seeing friends. In light of all the lonely deaths due to coronavirus, I feel especially fortunate that my family was at my mom's side when she died, and that our friends and relatives were able to gather for her funeral; we had all the traditional means of comfort and mourning that are now being denied to victims of covid-19 and their families. Also, I'm grateful that my dad's radiation just happened to end when the stay-at-home advisory started, a very lucky coincidence.

She said, "I hear that you are putting events into perspective, which is good, but that doesn't negate the fact that you are still in cancer treatment, and mourning the loss of your mother. Even though the world is going through a pandemic, you are also experiencing a personal crisis, and I give you permission to feel all the things you are entitled to feel." Those weren't her exact words, but pretty close. I teared up. I don't want to be all "woe is me", but I do still feel like I have a lot going on. As if a pandemic isn't overwhelming enough, I'm worried about my dad being alone, I am anxious about the dual risk of coronavirus and cancer, and I'm still trying to adjust to my new body, including my flat chest (still numb in some places, swollen in others, and also a challenge now that layers aren't as easy to pull off in warm weather), my hair (that is growing back but looks awful so I'm still wearing hats), and the medication side effects that just make me feel old and not well (tingling in my fingers, tightness in my legs and hips any time I stand up, and overall tiredness).

My social worker also pointed out that because the pandemic is rightfully at the forefront of everyone's minds, I'm likely not getting the kind of support that I might otherwise get from others, so it's all the more important that I work through my thoughts and feelings, and preferably not by myself. She says talking things through really does help to lighten the burden a person feels because it changes the way our brain processes the events. And I have to say, hanging up the phone after our conversation, I did feel a huge sense of relief. I'm so glad she called today, just talking to her for that short amount of time made me feel so much better!! She reminded me again of the breast cancer support group, which is now meeting virtually. I'm such an introvert, I've never been a fan of group settings, but I'll think about checking it out.

I got off the phone with my social worker just before my Herceptin finished at 11:15. The new nurse de-accessed port, and I left by 11:30. Altogether, today's visit was about 2 hours.

4/8/20: Cancer and the Coronavirus

At first I wasn't sure if having a history of cancer counted as a pre-existing condition that would put me in a high-risk category if I contracted the SARS-CoV-2 virus. Being NED means there is no evidence that I currently have cancer, and since my blood work already returned to normal after finishing chemo, I figured I'm not immunocompromised. 

This article, "Cancer Patients in SARS-CoV-2 Infection: A Nationwide Analysis in China," describes a study that looked at coronavirus patients with cancer in China. Compared to patients without cancer, "patients with cancer were observed to have a higher risk of severe events." Okay, that makes sense. But what about patients who have a history of cancer?

The article goes on to say that "patients who underwent chemotherapy or surgery in the past month had a numerically higher risk (three [75%] of four patients) of clinically severe events than did those not receiving chemotherapy or surgery." Okay, that makes sense, too. It can take several weeks for your body to recover after chemo or surgery. For me, both surgery and chemo were completed well over a month ago, so does that mean I'm in the clear?

Well, apparently, "cancer history represented the highest risk for severe events." Great.

The article did not differentiate between different types of cancer, but I wonder if some cancers, like lung cancer, might have a greater risk for complications than other cancers.

Anyway, going with what is known, I've been isolating pretty strictly since my town closed schools on March 13. Most days I do go outside to do yard work, or to take a walk in a secluded area behind my neighborhood. The only other time I leave the house is for treatment. Ken does the grocery shopping, and we take all the recommended precautions when he returns.

Whenever I have an appointment, I feel anxious. I know I am increasing my chances of getting the virus every time I go out, but I don't want to miss any treatments, either. Delaying or missing treatments could increase my chances of recurrence. It's a trade-off between risks related to the coronavirus and risks related to cancer recurrence. 

I'm thankful that I've already had my surgery and chemo. The timing of my diagnosis, and subsequent treatment, was pure luck. From what I'm seeing in Facebook support groups, some women are having their treatments delayed or discontinued, either because the risk of getting the coronavirus while on chemo was deemed too high, or because the treatment or procedure was deemed "elective", or at least "non-urgent". In this article, a man describes how the coronavirus is delaying his cancer surgery, a clear detriment to his prognosis. 

Today I read this article, "Between Scylla and Charybdis — Oncologic Decision Making in the Time of Covid-19." I admit, I had to look up the reference. Wikipedia tells me that "between Scylla and Charybdis" means to choose between the lesser of two evils. (Scylla and Charybdis were monsters on either side of narrow waters travelled by Odysseus in Homer's Odyssey.) In the article, the oncologist writes, "To survive SARS-CoV-2 only to then succumb to an undertreated cancer would be a Pyrrhic victory. The acuteness of infection and the chronicity of malignancy are the Scylla and Charybdis between which oncologists and their patients must now chart a very cautious course indeed."

My next treatment is this Friday. I sort of hold my breath in between appointments, wondering if the Cancer Center will call to delay or cancel. 

I know everyone is struggling with something during this pandemic. This is an unprecedented time with new and unfamiliar challenges for everyone. All the quiet time at home is finally giving me the space to process my cancer, the surgery, my mom's passing, and my dad's cancer. And that's on top of the pervasiveness of the fear and anxiety surrounding the coronavirus itself, the heartbreaking sadness and loneliness of people dying and mourning alone, the combined worry and gratitude for the front line workers, the feelings of distress for the many vulnerable groups who are most affected, and the unrelenting anger and frustration at the current administration for handling the pandemic response in the worst way possible. 

So, it's one day at a time. We're going through a collective trauma, but each person is experiencing it and handling things in their own way. I think the best advice I've heard is for everyone to be more compassionate and more gentle, with themselves and with each other.