The Breast Cancer Diaries, vol. 2, issue 16

The Bra Fitter

Yesterday, at the urging of my lymphedema physical therapist Manasee, I met with Lisa Lindenberg, the awesome certified mastectomy and lumpectomy bra fitter at the Steeplechase Cancer Center at Robert Wood Johnson University Hospital in Somerville, NJ. We had spoken on the phone on Wednesday, so she had an idea of what was happening with the burns and the lymphedema.

Lisa has many years of experience and has seen it all with regard to post-surgical breast cancer patients. She took one look at me and pulled out a bin with Prairie Wear compression bras. She fitted me with one called the Hugger Prima, which has adjustable straps.

It's definitely a snug fit across the breasts. It comes with inserts, but more importantly, it fits the Swell Spot pad that Manasee wants me to wear. The Swell Spot is a large, ungainly thing. It's a soft, quilted piece that covers the breast and wraps around the side, under the arm to my back. It contains small pieces of foam that provide a specific kind of compression to move the lymph fluid away from the breast and armpit.

I previously had been using it in that wraparound compression tube top kind of garment. It's a much better fit in the Hugger Prima. There's a YouTube video of someone inserting the Swell Spot into the openings where the inserts go, but since I'm big, so is my Swell Spot. It doesn't fit into my Hugger's insert section.

Regardless, Lisa had one that she demonstrated in the fitting. I was able to wear it myself in the Hugger for an hour (so far) this morning. I'll try it again later to limit the amount of time I could possible disturb the burn site.

Two of these Huggers cost me $150. While Lisa told me they would not be covered by insurance, my friend Tom suggested that I try my insurance company anyway because they are being sold as medical devices, from a hospital, to manage my lymphedema, a medical condition.

I wouldn't wear these out because they zip up the front, and the zipper can be easily seen under a shirt. Also, they don't provide the level of support I need. But, I can wear them to sleep, if possible, and at home to manage the symptoms.

The bottom line is that we know that compression works for me. I just need to figure out how to do it without angering the burns in inframammary fold. I'm really hoping that these bras provide the answer. So far, the bottom portion doesn't come in contact with the burn area, which is a really good start.

Letrozole Updates

I'm now a week into taking the Letrozole, and the side effects have been manageable. I have experienced bad heartburn 3 of the 7 days (especially the first two days), but each time, I was able to treat it fine. On Wednesday, ginger alone kicked its butt. The previous two times, it was Nexium. I use ginger in my morning smoothies, and have added 1 teaspoon turmeric to try to deal with the inflammation of the burns.

The hot flashes have increased in number, length, and severity. Which means that they went from my feeling very hot from my chest upward for a minute or two a few times a day to occurrences throughout the day and night lasting up to 10 minutes, sometimes with my becoming sweaty (although not all the time).

The nighttime ones are the worst because they wake me up. This ties into the insomnia. For the first three days on Letrozole, I slept soundly, even after waking up in the middle of the night -- something I'd not experienced since Sept. 2021. It was wonderful. It also helped me figure out that my memory problems are due to lack of sleep because during those days, I had ZERO memory issues.

But, now I'm not able to fall asleep easily, which is new. I didn't have a problem falling asleep, just staying asleep. And as of Sunday, it's both. On average, the past few days have seen 2-3 hours of sleep each.

Finally, there is some joint pain here and there. That's not actually supposed to hit hard until month 2, but I'm keeping an eye on it. To date, all of it has been easily addressed with movement.

All said, 1 week into it, not so bad. Mind you, it took two weeks for Tamoxifen's side effects to take me down. This time around, I strongly hope that eventually, my body will even out with the side effects, especially the hot flashes.

Otherwise, I've had to put a dent in the credit cards even more than the lymphedema bras. Letrozole and sun exposure do not mix well, so I've been purchasing UPF 50 clothing and a new sun hat to try to deal with that. Wearing extra layers and hot flashing will be a challenge. But, I'm willing to deal with it if it means I can tolerate Letrozole and just know that's my medication to prevent future breast cancer.

As ever, thanks for your kind thoughts and words, useful feedback, funny comments and private messages, adventure day company, prayers, love, good vibes, and gifts.

Remember to get your screenings, folks. Early detection is key.

The Breast Cancer Diaries, vol. 2, issue 15

The Next Leg of Treatment and Some Updates

Yesterday, I met with Dr. Omene to map out my treatment now that I've had the oophorectomy and am menopausal. She answered all of my questions and explained what I can expect moving forward.

I will begin taking Letrozole, an aromatase inhibitor, once daily as a pill. The enzyme aromatase is found all over the body in muscle, skin, and breast tissues, as well as in fat. Its job is to convert hormones known as androgens into estrogen. By blocking aromatase, my cancer, which loves estrogen (and progesterone), won't have fuel to feed new tumors.

Letrozole has a really good record of preventing recurrence, so, if I can tolerate it, that's the way I'm going to fight cancer recurrence for the next 7 years. Like every other drug, it has its share of side effects. Most commonly, these appear as menopausal symptoms.

I'm already experiencing those, especially hot flashing. A couple of days ago, I discovered that Dijon mustard brings on a hot flash. Rest assured, that will not stop me from using it.

Other common side effects include difficulty sleeping (have I mentioned my insomnia?), fatigue, nausea, loss of appetite, arthritis in the hands, rash, hair loss, depression, vaginal dryness/bleeding, high cholesterol, and osteoporosis.

To combat the last one, I'm taking calcium and vitamin D supplements. On Saturday morning, I will have a bone density scan to get a baseline early in treatment. I had one of these scans back in 2017, when I was having trouble with my back, and I know there's nothing to it. I'll be horizontal on a table for about 15 minutes as they run the X-ray machine over my body. A part of me wonders about all of this radiation I'm experiencing. Causes cancer, you know.

Before my next regular appointment with my endocrinologist, I'll get my cholesterol checked, as well as my thyroid numbers. We do that every 6 months anyway.

I did ask Dr. Omene what kinds of monitoring she'll be doing. Turns out, periodic blood tests are not the standard anymore. Oncologists found that they did not impact the patient's survival. Instead, she'll be looking for "signs and symptoms." Whether that's a indicative rash, other changes in the same breast, fluid in the lungs, profound headaches that just won't pass, or something else, as always, I'll be keeping a diary of exactly what I'm experiencing on a daily basis.

I will receive a bone density scan every 2 years, though, because once you start tinkering with estrogen, brittle bones can become a thing. In the beginning, I will see Dr. Omene every couple of months (2 to start). Then, it will be every 6 months, if all goes well. In the meantime, my other docs will do their monitoring.

Sad News

It's not really sad news; I'm just bit bummed about it. When I saw Dr. McManus (also yesterday), she said that she will be retiring in July. This visit, my 6-month follow-up, would be my last one with her.

She introduced me to Valerie Shander, my new nurse practitioner from here on out. She impressed me as being attentive and sharp, and asked all the questions you'd want your medical professional to ask (and in the right way). My new breast surgeon will be Dr. Lisa Hopkins, whom I haven't met yet.

Dr. McManus was dismayed to see that the burn inflammation, redness, and irritation in the inframammary fold have returned. There had been so much improvement since I started using tacrolimus. But, since late last week, there has been a gradual return of the radiation burn symptoms. It's disappointing and painful.

My hypothesis is that because I've been wearing compression garments to deal with the lymphedema, the skin in that area hasn't been getting the kind of airflow that it has enjoyed previously. In any case, it's inflamed and sensitive. I've resumed using the clobetasol ointment to deal with it. Most importantly, I'm off compression for a bit until it heals up, and the physical therapist needs to avoid the area.

The good news about the compression, though, is that it works. I dropped a full cup size of swelling, from DDD to DD. That's a big deal. Unfortunately, I have to find some kind of balance with compression and the burn area.

Dr. McManus had asked if I had been exercising. I do the post-surgical and lymphedema exercises every morning and night. I get out and walk daily, and have been gradually increasing my pace. I'm nearly at my regular walking rate, and will likely be there next week, all things being equal. I've also begun to try basic yoga stretches. Some I can do, some I can't yet. But, I'll keep at it, slowly.

Otherwise, I am still healing up from the oophorectomy. There is still some discomfort when I bend or move certain ways, but each day, I feel a bit more like myself. The crazy mood swings are gone, thankfully. The hot flashes are mostly unpredictable. Some days, I'm hot all the time. Today, not so much.

I have been having headaches most days, which sucks. Whether hormones, allergies, or weather, it's painful and annoying. Thankfully, they have been treatable.

Emotionally speaking, I'm feeling more like myself, but a much calmer me thanks to a lot of meditation. Recently, during my solo walks, I have been listening to inspiring guided meditations on an app called Insight Timer.

Even though there are the ongoing challenges of the burn resurgence and lymphedema, I feel as if I've emerged from a long haul of difficult days. Which is not to say that trying the new medication won't have it's own challenges, but I'm really hoping that they are manageable enough to stick with it for the 7-year treatment.

As always, I am grateful for all your support, love, kindness, funny jokes, silly comics, in-person visits, calls, texts, letters, adventure day company, shares of experience, prayers, and gifts.

Remember to get your screenings, folks. Early detection is key.

The Breast Cancer Diaries, vol. 2, issue 14

OOPH!

On Friday (today is Tuesday), I had my ovaries and fallopian tubes removed in a laparoscopic surgery known as an oophorectomy. The purpose of the surgery was twofold: 1. to cut off the majority of my body's supply of estrogen and progesterone because my cancer LOVES those two hormones, and 2. to put me into menopause so that I can try taking aromatase inhibitors because I couldn't tolerate Tamoxifen.

Because the human body also produces estrogen in locations other than the ovaries, it will be necessary for me to try the other therapies to avoid breast cancer recurrence in the future. All that said, it's still possible to experience recurrence or metastatic breast cancer (or even a different cancer from the treatment itself or some other reason). But, my medical team and I will try to do what we can to avoid that from happening.

How Am I Doing Post-surgery?

When I started working with Dr. Cernadas on this surgery, she told me that I'd feel like a truck hit me for the first three days. I'm not sure I'd describe it that way. Let me know if you think what I'm describing fits her description.

It's been 4 days since the ooph, and I'm pretty sore in the incision areas, especially at the belly button and the 2-3 inches below it. It's a tough spot because that's where pants hit me. Forget about wearing jeans or garments that use buttons to fasten for a month or so until I'm healed up. It's elastic-waist garments for the time being.

It's also going to be very loosely fitted garments because I'm still distended from the surgery. The doc used gas to blow up my belly like a balloon to better see and perform the surgery. They vacuumed most of the gas out, but immediately after the surgery, there was some left. That whole area may take a couple of weeks to get back to normal. According to this site: https://goldcoastprivatehospital.com.au/blogs/tips-and-tricks-laparoscopic-surgery, my intestines were shocked a bit and became distended by the surgery. It's just going to take time for everything to settle back down again. Until then, it's uncomfortable, and I look like I'm pregnant. Oh the irony.

The twin side incision points are about an inch north of where each leg meets my torso. They are lower than expected, but small. They're not as bruised as the belly button area is. Thanks to the arnica I've been applying, the very large bruise surrounding my belly button and extending 3 inches south is gradually fading. (The very large bruise, about 4 inches in diameter, on my right forearm from the IV is a different story. That's still dark purple and taking longer to fade.) Dr. Cernadas removed the ovaries and the tubes from the middle incision, which it why it had to be larger (and, consequently, more uncomfortable).

As you'd expect if you've been following along, I did not take any narcotics, nor opiates as part of the surgery or afterward. It's been Alleve and SIU (sucking it up) for me. Thankfully, the pain has been manageable enough that way.

After the Alleve, what has been helping the most has been walking around. I posted one of the walks I took with Patty the day after the surgery at Leonard J. Buck gardens (if you're in the NJ area for the next few weeks, it's a must-see). It was a slow, painful walk around the bottom of the garden, but the weather was so fantastic, and so many plants and trees were blooming that it made for an excellent distraction for a while. Did a lot for my spirit.

The following day, Sunday afternoon, Patty and I met up with Jim at Colonial Park for another slow walk. It was a nice, long walk with a rest on one of the many well-placed benches in the rose garden. Today, I took two slow walks around my neighborhood. The second walk, also with my pal Jim, was shorter because I was hurting a bit and needed to get home and rest.

Sitting is very uncomfortable. In fact, I've been writing this entry over the course of 12 hours, with some long breaks in between (especially when Jim came for dinner). Mainly, I've had to get up and walk around because it becomes painful after a few minutes sitting in front of the computer.

The first night of the surgery, I was instructed to sleep sitting up in the recliner so that I wouldn't end up with back or shoulder pain from the inflation gas. I tried it until 1 am, but gave up because I was so uncomfortable that I ended up pacing around the first floor until I was utterly exhausted. (I watched the Andy Warhol Diaries on Netflix, which wasn't adequately distracting, but interesting nonetheless, especially from an archival point of view.) Finally, I very slowly and painfully climbed the stairs, and thought long and hard about how I would get on top of my bed.

My bed is pretty high off the ground thanks to a tall mattress and a 3-inch memory foam topper, plus bedding. I'm 5'2" on a good day, so it's normally a bit of a challenge. I hauled myself up there, trying not to make noise from the pain and wake Patty sleeping in the room across the hall. I lay on my back for several hours, not sleeping. I did breathing exercises and meditated. It was a rough first night, but being in my bed rather than trying to make a go of it on the couch any longer was an improvement.

Lower abdominal surgery is no picnic, even laparoscopically. In addition to the belly pain, I also have some groin pain and stiffness on the right side due to my right leg's position during the surgery, according to Dr. Cernadas' fellow. It makes going upstairs more challenging than just the surgical pain. Same with sitting.

There's another piece of this whole experience that made it even more of a challenge. On the night before the surgery, I got my period. If I said my body betrayed me yet again, I probably wouldn't get an argument from most women. Insult to injury? Sure, I'd go with that. Going out with a bang? Well, now you've gone too far.

The thing about having your period at any time, not just during surgery, is that your body is so much more sensitive to pain. Just try going to the dentist for a cleaning or a procedure during your cycle. It sucks.

For the first two days after the surgery, I was uncomfortable in many ways. The nature of dealing with the hygienics of being in my cycle and not being able to bend my body without a great deal of pain really sucked. I'm so glad it was my last period ever.

Things They Didn't Tell Me

I didn't know I'd be catheterized. I should have expected it. I had been for the breast surgery, but didn't feel a thing afterward. Not so this time.

You know how after you've gone through recovery and the nurses won't let you leave the hospital until you've peed, eaten something, and had something to drink (not necessarily in that order)? That's never been an issue for me, and wasn't this time either, until I sat down and experienced burning I've never felt before. I thought there was something seriously wrong. I couldn't tell if I was bleeding from my urethra or not because I was already bleeding menstrually.

Turns out, it's pretty common to have this painful pee burning afterward. And, you know what relieves it (EVENTUALLY)? Drinking lots of water and peeing more. Here, have some more pain with your pain! The burning lasted all night. Thankfully, by Saturday morning, it was hardly there and eventually disipated completely.

While we're down there, I also wish I'd been warned that my intestines might go on strike for a few days. Which they did.

When you're already bloated from menstruation and surgery where they literally blow you up with gas, it's hard to tell if some of the swelling might also be because you haven't evacuated your bowels since the morning of your surgery. By Sunday, I was getting a bit nervous because I'm one of those very regular people. I eat a high fiber diet and drink kefir. You can set your watch by me.

A fellow librarian, whose mom is a pharmacist, recommended a stool softener. I settled on a laxative that didn't look too bad chemically and took a teeny pink pill with a bottle of water Sunday evening. It didn't agree with me, and I felt queasy and crampy, but I was determined to jumpstart my system. At midnight, it was only minimally effective, so I took another teeny pink pill (the instructions said 1 to 3 for an adult dosage) and drank another bottle of water. I didn't sleep the entire night for feeling poorly. At 6 a.m. on Monday, same deal. I took the last pill. By 9, I was in and out of the bathroom feeling like total crap (I know) and having an "everybody out!" day.

The cramps were so painful and my body was already so pissed off at me that I cried a bit. Then, I accepted my fate and put a good novel in the bathroom to try and distract myself. It helped some. Finally, by around 6 pm on Monday, it stopped, and I was completely wrung out.

On the flip side of that coin, I slept better last night than I have in many months. I awoke feeling somewhat like myself with a bit of energy despite the pain in my abdomen and groin.

Thanks tons to Patty Scott who stayed with me from Thursday to Monday, took me to the hospital and told me good things while I was anxious, cared for me in so many ways in the days after the surgery, and showed up for me as my spiritual sister. I'm very grateful to have such a dear and kind friend.

Thanks also to Jim Nordhausen for being an exceedingly helpful dear friend, too.

Thanks to everyone who has sent good vibes, kind words and thoughts, love, hugs, funny bits, and caring comments. Thanks especially to those who continue to check in on me. I appreciate all of it.

Don't forget to get your screenings. Early detection is key.