12/30/20: My OB/GYN Called Me

She called to tell me that some routine GYN tests came back negative, and also to make sure I've scheduled the ultrasound she ordered.

I jumped on the chance to ask her some questions. Since my appointment, my estradiol number did come back, and it's 31. There is some overlap in the normal range for post-menopause and pre-menopause, depending on where you are in the menstrual cycle, and 31 is in that overlap. It's low, but not very low. She said my medical oncologist will have to weigh in on whether or not that number is "low enough" for cancer treatment purposes. I pointed out that my estradiol had increased from a value of "less than 5" in July, and she said that the value can fluctuate, but agreed it's noteworthy that it went up. 

I also asked if the ultrasound will help shed any light on whether or not the Lupron is working. She said the ultrasound will measure the uterine lining. In post-menopause, the lining should be on the thin side; a thick lining could indicate that my body is producing more estrogen, which causes the lining to grow. 

I think she sensed that I was trying to think a few steps ahead in this process, i.e., what does it mean if the Lupron isn't working? She emphasized that we are at a "to be continued" point in the discussion, and the pelvic ultrasound will give us more information. She'll touch base again after she gets those results, and then I'll circle back with my medical oncologist.

12/28/20: I Checked My Insurance Claims Online

The staggering cost of health care never ceases to amaze me. I am so thankful we have insurance. No one should have to go through cancer while also worrying about how to pay the medical bills.

9/4/20: Maintenance Herceptin #13 + Lupron: $15,322.48
9/24/20: Medical Oncologist Appointment: $260
9/24/20: Maintenance Herceptin #14: $14,856.32
9/29/20: Exemestane: $1,499.99
10/1/20: Port Removal Surgeon: $748
10/1/20: Port Removal Hospital: $2,616.67
10/2/20: Lupron + Flu Shot: $875.97
10/30/20: Lupron: $571.16
11/24/20: Echocardiogram Cardiologist: $243
11/24/20: Echocardiogram Hospital: $1,886
11/27/20: Lupron: $571.16
12/3/20: Cardio-Oncology Appointment: $288
12/3/20: Cardio-Oncology Hospital: $248

Total cost to date: $414,734.93
With insurance, cost to me: $8,254.63

12/28/20: OB/GYN Appointment

I assume this post's title is sufficient warning for potential TMI in this update...

Today's appointment was initially scheduled for April, but was re-scheduled 4 times due to COVID-19. Then I re-scheduled it one more time to get an earlier date after I had that unexpected spotting. 

My monthly Lupron shots for ovarian suppression are supposed to put me in chemically-induced menopause, so any bleeding is unusual. My OB/GYN put in an order for a pelvic ultrasound, just to make sure there's nothing else going on.

She looked at my recent blood work, and apparently my FSH (follicle-stimulating hormone) level is not in the post-menopausal range. I learn something new every day, and today I learned about FSH. The pituary gland makes FSH to stimulate estrogen production. As menopause nears, the ovaries produces less estrogen, but it's like the body instinctively tries to put up a fight, and the level of FSH actually increases in an effort to get the ovaries to keep making estrogen. So, if the Lupron is working properly, I should have a high, post-menopausal level of FSH. But I don't. My FSH level is very low and in the normal range for pre-menopausal women. (1/12/21 Update: Actually, this is completely wrong. I correct my own misunderstanding in this post.)

(I guess when my oncology NP took a quick look and saw that all my blood work came back "normal", she forgot that my FSH isn't supposed to be in the "normal" range.)

I told my OB/GYN that my NP had also put in an order to test for estradiol, but those results still weren't available. The OB/GYN agreed that seeing the estradiol number would help determine whether or not my body is actually producing estrogen again. I also mentioned that I haven't had any hot flashes in a while, and I noticed around the same time as the spotting that my vaginal dryness had improved. She said both those things could be additional signs that my body is producing estrogen.

If that's the case, I think the problem goes back to my medical oncologist, to figure out what to do about it. I'm wondering if there is a higher dose of Lupron I could get, or if I'll have to get my ovaries removed after all. I reminded my OB/GYN about the concerns we discussed at my last visit, and she said that even if the possible long-term risks are valid, she thinks breast cancer is the bigger threat right now, and should be prioritized over possible problems that might develop later. If I do get an oophorectomy, she'd refer me to a gynecologic oncologist to do the procedure.

Maybe I'm getting ahead of myself. I guess my next steps right now are to wait and see what the estradiol number is, and what the pelvic ultrasound shows. Then I'll circle back with my medical oncologist and see what she says.

My OB/GYN did say that the internal exam looked fine, and she doesn't expect anything to come up in the ultrasound. She clarified, too, that my exam looked normal for my age, not for someone in menopause, which is another piece of data pointing to estrogen.

Back at home, I called to schedule my appointment for the pelvic ultrasound, which will be in a couple weeks. Apparently I need a full bladder for that procedure. I'm supposed to void my bladder 90 minutes before my appointment time, and then drink 24 oz. of water within the next 30 minutes, giving the water 60 minutes to get to my bladder. (I think "void the bladder" is a funny phrase. Why not just say "empty the bladder"?) 

I have to say, I really appreciate it when people on the phone are kind and patient. I feel like the scheduler I spoke with understood that chances are, if someone needs to schedule a pelvic ultrasound, there is some amount of anxiety and fear involved, and just being nice can go a long way in making the caller feel better.

So all of this kind of feels like a blow. I had hoped that after I finished Herceptin and got my port out, I would finally settle into a stable phase of treatment with far fewer medical appointments. I've used this analogy before, that it feels like I am just being carried along on a river of cancer treatment. The DMX surgery and chemo felt like white water rafting, and this past year still felt like rough waters while I tried to manage my side effects. I was looking forward to having a nice stretch of smooth sailing, but it's like the river took an unexpected turn, and there might be more rocks up ahead. 

12/26/20: I am Posting Photos of Clothes on Instagram

Unlike this blog, my Instagram account (which I just started this summer) is not compartmentalized to focus only on breast cancer. But, I've used it as a place to post photos of flat-friendly outfits. 

When I look through other people's photos, it seems like most women who post are happy with their flatness; at least, their outfits don't try to hide it. It also seems like a lot of them are more on the thin and slender side, and don't have to worry about a "Buddha belly," that problem when having no breasts make your belly stick out more. 

Anyway, I do have a little Buddha belly - or a Pooh belly, as I will sometimes call it - and I'm not interested in calling attention to my flatness, so I'm still dressing in layers to hide both my flat top and flabby middle. I honestly never gave much thought to clothes before, but now I can really appreciate how having the right outfit can make me feel more confident going out, and more comfortable in my own skin.

12/23/20: Lupron + Medical Oncology NP Appointment

This was my first medical oncology appointment since finishing Herceptin and getting my port out. It actually felt a little weird! I had to get blood work done, and instead of going in to see the port nurse, I saw the phlebotomist for a regular blood draw. She commented positively that all patients eventually "graduate" to her, but it's funny, it felt more like coming around full circle, since I started with her before I even got my port.

The Cancer Center felt like a well-oiled machine today, maybe because there are fewer appointments this close to Christmas. I went straight from the reception desk to my blood draw, from there to getting my vitals taken, and then I was brought directly to the exam room. I don't think I had to wait even 5 minutes for my NP to come in. 

Today was the first time I felt really comfortable with my NP. We started with general topics, like how my family and I are doing in this pandemic, what we're doing for New Year's, and then she had a list of items to ask me about - basically she asked for a update on each of my major side effects - and I was pleased that her list was a spot on match for things I wanted to talk about anyway. 

Most of my lingering side effects (very mild neuropathy in my fingers, mild fluid retention, joint stiffness) aren't disruptive to my daily living, they're just annoying. The only new thing I had to report was some unexpected spotting last month, which was concerning because the Lupron is supposed to put me in chemically-induced menopause. She said it's unusual, but not unheard of, and she referred me to a gynecologist. As it turns out, I actually already have an OB/GYN appointment scheduled on Monday, so we'll just see how that goes. 

She also pulled up my blood work and added a request to test for hormones. Apparently, estradiol is an estrogen hormone, and by measuring it, you can see whether or not the Lupron is working, i.e., whether or not it's sufficiently suppressing the ovaries to not produce estrogen. 

Some good news is that all the routine blood work came back normal.

I also asked about the COVID-19 vaccine. I haven't heard much in terms of whether or not it's been tested in cancer patients, or whether or not a history of cancer counts as a comorbidity for vaccine priority. She said having a history of cancer is definitely a risk factor, and she and her colleagues are advocating for patients with a history of cancer to be included in the "individuals with one comorbidity" group. But the logistics of getting just the first round of vaccines out to health care workers is still being ironed out, and there's no way to say how things will go later. I'm not really worried; I figure I'll just do whatever is recommended, whenever it's recommended.

Anyway, after that appointment, I went directly to the infusion room to get my Lupron shot. The nurse was someone I think I had never even met before, so we didn't chit chat much, she just gave me the shot, and I was done within minutes. Today's whole visit was less than an hour. 

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.  

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! 

12/3/20: Cardio-Oncology Appointment

Everything's fine!

The appointment started with a quick EKG. It took longer to attach the sensors to my legs, arms, and torso than it did to actually take the recording. 

I had already printed out my echocardiogram report from the online patient portal. The ejection fraction is now 57%, which is well within the normal range of 54-73%. My baseline was 63%, so I asked the doctor if my ejection fraction might continue to improve and return to baseline? She said maybe, and I got the impression that it really doesn't matter, since the number is already considered normal. Anyway, I won't be getting any more echocardiograms, so I'll never know!

The doctor did a brief physical exam, took a listen to my heart, and said everything sounded great.

I asked about my blood pressure, since my bottom number is sometimes in the 80s and 90s. She said to monitor it for a week or so, and ideally I should be calmly sitting down for 10 minutes before taking a measurement! If it's consistently above 90, then I should let my PCP know.

She said there's no reason to worry about any long-term side effects to Herceptin, so she can graduate me from cardio-oncology. Yay! That's one less thing to worry about. If I have any symptoms like heart palpitations, shortness of breath, or fluid retention in my legs, I can reach out to her again.

11/27/20: Lupron

I went in for my monthly Lupron shot today. There's nothing to report, I just chatted a bit with the nurse, who I hadn't seen in a few months. 

Incidentally, I think the Mederma Advanced Scar Gel is giving me a rash. The port incision feels itchy, and the surrounding area looks red. I've been using both the scar gel and the Mederma PM Intensive Overnight Scar Cream, applying the gel in the morning and the cream at night. They have different active ingredients. I'm going to stop using the gel and just use the cream at night. 

11/25/20: I Have a Lot of Joint Stiffness, and Other Side Effects

Joint stiffness is a common side effect of exemestane. The longer I don't move a joint, the worse the stiffness. Every morning when I wake up, this is as far as I can go in making a fist:

It's a little painful pushing through the stiffness. I have to slowly, gradually open and close my fingers until I can make a fully closed fist. 

If I don't use my hands for a while, or stay seated or standing in the same position for a while, the joints stiffen. Just the amount of time it takes to cook dinner makes sitting down afterwards feel like a huge relief on my legs. It's all manageable, but it's a nuisance, and makes me feel decrepit.

The tips of my thumb, index, and middle fingers on both hands are still very slightly numb and tingly all the time. It's just another nuisance now. It doesn't affect my ability to do any daily activities, but I do think I'm a lot clumsier than I used to be, like I always have butterfingers. 

My hands are still puffy, and my feet feel bigger, too. At least, my shoes and socks feel tighter. I don't know if it's fluid retention or actual weight gain, but if it persists, once this pandemic is over, I'm going to see about re-sizing my rings, which I haven't been able to wear since January. 

11/24/20: Echocardiogram

Today's echocardiogram was ordered by my cardio-oncologist. I think the idea is to make sure my heart function has returned to normal after finishing Herceptin. 

Instead of going to my usual hospital, this echocardiogram was at the cardio-oncologist's office, at a different suburban satellite location. I don't know if it was the doctor's orders or the technician I had, but the echocardiogram took longer than usual, like 20-25 minutes instead of 10-15 minutes. It seemed like the technician was taking more measurements than at previous appointments. 

Anyway, it was uneventful. I have the follow-up appointment to discuss the results with the cardio-oncologist next week. 

11/22/20: (7 Weeks After Port Removal) Incision Closed

Oh, that was much quicker than I anticipated! I thought it would take months for my incision to fully close, but it only took a couple weeks. I guess it made a big difference that the opening after port removal was much smaller than the opening after port placement. 

Here's what it looks like now:

It's prominent enough that I'm thinking of trying some scar-reducing cream on it. During chemo, my port nurse recommended Mederma. There's a whole line of products, I'm thinking of trying both the daily scar gel and the overnight scar cream.

11/12/20: I have Lyme Disease!!!!!

OMFG!!!!!

Can I not catch a medical break?!?

I know this is supposed to be a cancer blog, but I figured I'd make this post anyway, since I already mentioned the tick bite. 

So here's what happened, with pictures. 

The tick bite was on my waist. According to this very informative web site that dispels myths about Lyme Disease, "Ticks don’t jump, fly, or drop from trees. They crawl up." The tick probably climbed up the outside of my pant leg until it found some flesh to bite. Ugh. Gross! This is why you're supposed to tuck your shirt into your pants, if you want to prevent tick bites. 

This is what the bite looked like after the tick was removed:

The area just around the bite stayed a bit red, and the bite itself scabbed over. After a couple days it settled down to look like this, and stayed that way for about 2 weeks:

I figured, once the scab falls off, I'll be out of the woods. But no! After 17 days, I saw this:

An early symptom of Lyme Disease is a rash that appears between 3 and 30 days at the site of the tick bite. The CDC says the rash "may feel warm to the touch but is rarely itchy or painful"; mine is definitely warm to the touch and also definitely itchy. The rash gradually expands, and sure enough, 2 days later (today), it looked bigger:

But where's the bullseye?! The same myth-busting web site linked above says that less than 50% of cases involve a bullseye-shaped rash. In fact, according to the CDC, 20-30% of cases don't even have a rash at all. I guess I should be thankful that I did develop a rash; if my Lyme Disease symptoms started with a fever, I would have been worried about COVID-19 first, which would have delayed my Lyme Disease diagnosis for sure. If it started with fatigue and joint aches, I'd have chalked it up to my daily dose of exemestane, and who knows how long it would have taken to diagnose Lyme Disease!

Anyway. So today, 19 days after my tick bite, I called the doctor. My regular PCP wasn't available, so I saw another doctor in the same practice. I liked him; he was very calm and patiently answered all my questions. I told him the whole story, then he took one look at the rash and said, "I think we should treat you for Lyme Disease." He said it's possible I could have some other tick-borne disease, but the treatment would be the same, the antibiotic doxycycline.  

I said maybe it's not Lyme Disease, because as far as I could tell, the tick was probably attached for less than 36 hours, and some web sites say that Lyme Disease is "unlikely" unless the tick is attached for at least 36 hours. He said there's always a chance of transmission, it's just more likely the longer the tick is attached. Back at home, I found this web site that confirmed, "The risk may be low the first day, but it’s not zero... The longer a tick stays on you, the more likely it will transmit disease."

I asked if I should get tested for Lyme Disease, and he said it's not necessary because the rash is clearly related to a tick bite, and he would prescribe the same antiobitic no matter what the specific diagnosis is. He said testing is usually used when a patient has symptoms but no known tick bite, to figure out what's wrong.

He gave me a 10-day antibiotic prescription. The rash should go away, and no follow-up is needed. I should call again only if the rash doesn't go away, or if any symptoms persist after 10 days.

I've heard of people having chronic Lyme Disease symptoms, so I asked if Lyme Disease is curable? His answer was in line with what I later confirmed on the CDC FAQ: "Although most cases of Lyme disease can be cured with a 2- to 4-week course of oral antibiotics, patients can sometimes have symptoms of pain, fatigue, or difficulty thinking that last for more than 6 months after they finish treatment." I guess I will just cross my fingers that I fall under "most cases". 

11/7/20: (5 Weeks After Port Removal) The Steri-Strips Came Off

Following my nurse's recommendation, this past week I actively washed the port removal area, instead of just letting soapy water run over it in the shower. The steri-strips finally came off today. 

I don't know why this area is so slow to heal! As you can see in the photo, the top half of the incision is fully closed and healed, but the bottom half is not! I wouldn't call the bottom half "open", but the edges definitely were not pulled close enough together by the steri-strips. 

I guess this scar will need to heal in the same way the port placement scar healed; skin will need to grow in to fill that gap. At least the gap is not as big as it was before. But it will presumably take a loooooooong time to heal. Like, months instead of weeks. Again.

I'm pretty bummed. I was hoping this would be a smoother recovery, so that "port removal" could be a thing I could put behind me, instead of something that will drag on and on. So weird that my two massive mastectomy scars healed just fine - not to mention my C-section incision, twice! - and this small little incision has given me so much trouble. 

I feel validated in my decision to ask for a new doctor for the port removal. If I hadn't had a different doctor from my port placement surgery, I would totally blame this lack of incision closure on that doctor. I mean, maybe it's still the doctor's fault; maybe both doctors aren't very good at closing incisions. Or maybe it's just me, I'm just not healing well there, who knows why. 

10/30/20: Lupron

Got my monthly shot. Nothing too exciting there.

The steri-strips over my port removal incision still haven't come off. It's been almost a month. The discharge papers say the strips will fall off on their own, but don't say how long it should take. Google tells me they usually fall off in about 2 weeks, but my nurse today said it's okay if they take 4-6 weeks. She suggested I could help them along a little by gently washing the area with a washcloth in the shower. I'll do that; so far I've just been letting soapy water run over them.

I also decided to show the nurse the tick bite I got last Saturday. I walk in the area behind my house, and there's a short path through some light woods. I was wearing long sleeves and long pants (though the top wasn't tucked in), and I certainly didn't rub up against any branches or leaves. So this means a tick somehow fell on me, and crawled on my clothes and body until it found a spot on my waist to bite. Ugh! Gross. I'm not even sure if the tick bit me on Friday or Saturday, but I found it on Saturday. Ken pulled it out with tweezers. There was a tiny hole where the tick was, a small dark purple dot around the hole, and then a larger red patch around that. I've taken pictures of it almost every day since, and it looks like it's getting better, but I figured I'd show the nurse just in case. I showed her the photos and she agreed it looks like it's improving. She said to watch out for fever, chills, warmth in the area, and a growing rash. If I get any symptoms, I should contact my PCP.

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.

10/4/20: I Took the Dressing Off My Port Incision

The port removal team was so careful not to use chlorhexidine, but it looks like I got a rash after all, this time from the Tegaderm dressing.

It's pretty itchy, I keep rubbing it gently through my shirt, trying not to scratch it.

10/2/20: Lupron

I woke up with the port area feeling sore and achy, but not enough to take another Tylenol. 

I got my Lupron shot, and also asked if I could get a flu shot today. I had to wait around a while for the order to go through, but I got it.  

From now on, I only need to go to the Cancer Center every 4 weeks for the Lupron. My next medical oncologist visit is in 3 months, too. Still, my calendar isn't totally empty; in the meantime, I have an echocardiogram, a follow-up with the cardio-oncologist, and an appointment with my OB/GYN. 

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.

9/24/20: Last Maintenance Herceptin! + Medical Oncologist Appointment

Today was my last infusion!!!!!

I am talking excitedly about it, but I'm not really sure how it feels yet. Maybe a little anticlimactic? Maybe a little scary? Or disorienting? It's a little weird to have a certain routine for a year, and then stop it suddenly. Of course, all the time not spent at the hospital is mine again, so that's good. 

Some hospitals do this thing where you ring a bell on your last day of treatment. It's a pretty big deal to a lot of people, and bell-ringing photos and videos regularly pop up in the Facebook support groups I'm in. But my Cancer Center doesn't have a bell, and I'm okay with that. I don't like being the center of attention, and I think I would feel self-conscious. But part of me does wonder if ringing the bell would provide a kind of closure, to help in the moving forward process. 

Anyway, I made chocolate lava cupcakes to celebrate. And Ken will be making paella for dinner. Yay!

Okay, back to my appointments today. The port nurse was behind schedule so the medical assistant took my vitals while I waited to get my port accessed. (For the last time!) 

My medical oncologist appointment went well, I think because I didn't have any open-ended concerns. 

I reported that my thumb and first 2 fingers on both hands are still numb and tingly, but now only very mildly so. Occasionally, for brief moments, my left hand even feels normal! Ever since my last appointment with my physical therapist, I've been doing only the prescribed stretches, and I haven't had any flare-ups of pain or discomfort. 

Thanks to the exemestane, the stiffness in my fingers has increased significantly so that I need to pump my fingers regularly throughout the day, to keep the rigidity at bay. It's a crazy feeling every morning, waking up to fingers that won't bend, and having to slowly work my fingers until the mobility returns. 

My left hand still looks puffy to me. Shoes that used to feel loose now feel snug, and my old watch is tight on my wrist. Even my face looks a little puffy to me, so either I've gained weight all around, or I'm retaining fluid. Either way, I think I can blame the Lupron.

Also because of the Lupron, I still get hot flashes, but not nearly as frequently as before. I used to get them at least several to many times a day, but now it's more like 0-2 times a day. I don't know if the side effect is wearing off, or if the cooler weather and colder household temperature are a factor. 

As suggested by my PCP, I asked about getting a colonoscopy before age 50. Contrary to what I found online, she said I don't have an increased risk of colon cancer due to breast cancer. Interestingly, however, several organizations, including the American Cancer Society, have recently changed their recommendations to say that even people with an average risk of colon cancer should get screened at age 45. Apparently there are many types of screening besides colonoscopy, but a colonoscopy is the most thorough option. I'm 44 now, and I'll be 45 by the next time I see my PCP, so I guess I'll go ahead and ask for some type of screening and see what my PCP suggests.

My oncologist was very nice and excitedly congratulated me on finishing Herceptin. No hugs because of COVID-19 but I think if we weren't in pandemic it would have been a hugging moment.

Up in the infusion room, I saw the "new" nurse that my regular nurse had trained. I had to wait a long time for the Herceptin to be delivered from the pharmacy, but that's not a complaint, I didn't mind just sitting and reading my book. 

When everything was finished, I wanted to say it felt great, but I didn't really feel much at the time. The nurse de-accessed my port, and then confirmed my upcoming appointments, including next week's Lupron shot. I guess that's part of why I don't really have a sense of completion; I'll be back again next week, and every 4 weeks after that, until menopause or until I opt for an oophorectomy, whichever comes first. 

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!!