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.