The Breast Cancer Diaries, vol. 2, issue 22

Cancerversary, Back to Work on Campus, and Personal Victories

It's now over a year since my diagnosis (Sept. 2021). I had a mammogram, which led to another mammogram and ultrasound, then a biopsy, then a breast surgeon, then a uterine biopsy, then a lumpectomy, then radiation, then some really bad burns and treatment, then a new dermatologist, then Tamoxifen, then terrible non-stop migraines and hot flashes, then no Tamoxifen, then lymphedema therapy, then an oophorectomy, then menopause, then Letrozole, then ALL the painful side effects, then no Letrozole, then a trip to the emergency room, then damage to my right hand, then another mammogram, then loads of tests. And, here we are. 

Of course, from reading all of these diary entries (and if you're a FB friend, you also get the Quickies) you know there has been much more to it than that, but if you wanted a cut and dried summary, that's the driest one I can provide. It's hard to believe a year has passed already, although during it, I was aware that my life had become a fairly nuts and painful runaway train. At least for now, life is greatly improved. More on that below. 

Back to the Archives and Special Collections

Beginning in September, I returned to campus on Mondays and Wednesdays from 10-2 and worked the other weekdays at home. It was a good way to ease my transition back to in-person work. I've been working from home all this time, but I missed being with the materials and colleagues on site. Coming back in person was exciting, anxiety-producing, and exhausting. Also, a big learning experience.

I learned that being there only 4 hours (plus the 2 hours of commuting time) was inefficient. Also, with that schedule, I didn't get a lunch, which was difficult because I need to eat nutritiously more frequently for better healing. So, starting in October, I split my hours between three days in the office Monday, Wednesday, and Friday. But that will change in December.

A couple of weeks ago, the Grants folks, who had helped me write a big grant application (also with help from the Dean of the Library), let me know that we did, in fact, land this whopper of a grant. If you're interested, a summary is here: https://www.imls.gov/grants/awarded/st-252518-oms-22. And, now I'm on another runaway train, which is trying to manage the big project that is this grant. It is essentially a three-part series of projects, some of which overlap. 

More importantly, I'm figuring out what I need to manage the stress of it (MEDITATION, very good diet, and exercise), as well as the fatigue that comes with radiation -- the gift that keeps on giving. Lymphedema causes fatigue, too, but not anywhere near as rough as the radiation. Having the days off in between is incredibly helpful. But, come December 1, I will gain another 9 hours, thanks to the grantors. My plan is to serve those additional hours at home on Thursdays. 

Overall, I'm glad to be back. However, it is unnerving that I am in a teeny minority of people who still wear masks. I wear mine all day in the Archives because there are study rooms adjacent to the Archives space, and when folks are wearing fragrance, I can smell it. So, shared air. I know some folks think that I may be overly cautious, and that's OK. I'm good with that. A secondary benefit is that my allergies are much improved by being masked in the Archives. 

 

Since my in-person return (and prior to it, but much more so now), I have been open about the breast cancer, as well as the lymphedema. Because I wear an arm compression sleeve, I am visible in a different kind of way than just being the archivist with the blue or purple crew cut. I take it as an opportunity to raise awareness of lymphedema as a secondary disease from breast cancer treatment. 

Personal Victories

Speaking of lymphedema, I went to see Lisa the bra fitter this week to try a smaller compression bra. Miracle of miracles, I dropped an entire size! She was very happy for me and said that she could tell right away that I had lost some weight. Don't get me wrong, I still carry significantly more me than I did last year, but I can now see results from the exercise and better dietary choices. 

 

Importantly, the inframammary fold burns have improved so that I use compression every day for most of the day. I know. That is big news, too. For the last month or so, I stopped using all the ointments and switched to baby powder to keep it dry and chafe free under my left breast. It took a while to be able to do so. Previously, I tried powder, and the burns just flared right back up. So far, I am cautiously optimistic, and Dr. Singh was happily surprised. The skin remains very discolored, which he said would take a year or more to clear up. But, for the past few weeks, I have felt much better in the burn area. It is such a relief. It also makes me feel hopeful. 

Back to the bras, this morning, I fit into an athletic bra that I couldn't fasten in more than a year. I wore it on a walk. It was a tight fit, but as you can guess, I'm still happy about it. 

Other Stuff

I still experience pain in my right hand. Physical therapy helped, but then Cigna denied my continuing the therapy, which isn't helpful at all. The physical therapist is trying to sort it out, but in the meantime, it hurts and feels tight all the time.

 

I am a member of a few breast cancer and lymphedema (and breast cancer with lymphedema) Facebook groups. Like all of the members, I have a cancer story to tell with all its pain, ugliness, and moments of triumph, however small.

 

It amazes me that I'm already to the point where time has tempered some of the experience. Which doesn't mean that my journey with BC is over. Far from it. I'll be monitored with blood tests every 6 months; mammograms on my left breast every 6 months and both annually; and every time I go to any kind of doctor, there are many more tests just because I have cancer and had a positive lymph node. There's also the daily wearing of compression garments, which I'll do for the rest of my life. 

 

By the way, Cigna isn't paying for the compression bras despite having said they would. The ones I wear are $75 a pop. Thankfully, they pay for the arm sleeves, which are custom and cost a lot more. There's a bill up before Congress to get Medicare to pay for them. Once they do, we all get a break. 

 

All of these medical garments I wear have a life of about 6 months. The first two arm sleeves have already stretched in length despite my handwashing and babying all of the compression gear. Since I've changed to a smaller compression bra, I'll now need to replace the two I've been using (which are now 6 months old). So it goes. Another line in the budget. 

Lastly, I have been living my life in CAPITAL LETTERS as I said I would. I took a road trip to see my very dear friend Jane in Erie, PA, and this time next week, I will be on another adventure with another dear friend Joy. I travel a bit differently than I have in the past. Now I pack baggies of turkey tail mushroom powder to eat in my morning oatmeal. I also bring my lymphedema and post-surgical exercise handouts with me.

 

As ever, I am grateful for your continued reading of these diary entries. Thanks especially to those who have sent love, prayers, hugs, very silly gifts, very timely gifts, and shared their own experience.

 

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

 

The Breast Cancer Diaries, vol. 2, issue 21

A New Chapter in Many Ways

It took me about a month since the last BCD to come to terms with the emotional load I've been chewing on since the last meeting with Dr. Omene. [Quick recap: I can't tolerate the medications to prevent a cancer recurrence. One also happens to be what they give to women with my kind of breast cancer that becomes metastatic. Given my reactions to medications, I likely won't be able to tolerate chemo, either. So, if metastasis occurs, I'm f*©ked.] Although, while I'm clear about the possibility of a ticking clock, I have come to espouse the following view, expressed in questions: "What if it works out alright? What if I don't have a recurrence?" 

It's a bit of a take off on Rose's "just in time worrying" practice, meaning worrying when there's actually something to worry about. In short, I'm making a decision not to live in the probability of metastasis, instead preferring to LIVE MY LIFE. Yup, live it in capital letters, my friends and family. 

Don't get me wrong, as I've been working my way through this emotional journey there have been moments that were unexpected and knocked me off my pins for a day or so. Some songs hit me a completely different way now. Recently, I was exercising on the treadmill, listening to one of my favorite artists, Neko Case. She sang a cover of the Harry Nilsson song "Don't Forget Me." Now, this wasn't the first time I've cried to that song. It used to wreck me during and immediately after the divorce. This time, when I heard the line about being old and full of cancer, I lost it. Wept all over the treadmill. Makes me a bit tender just writing about it now.

I could go on about songs, but I'll just share on one more and move forward. On one of my recent walks in the park, I was listening to U2's album All That You Can't Leave Behind. After 9-11, I had it on constantly. This time, when I heard the song "Walk On," it made me profoundly sad (look up the lyrics). Afterward, I had the epiphany that I needed to stop living as if recurrence was a foregone conclusion. Sure, it's likely because I had 1 positive node (and cancer seems to get all of us sooner or later). But I really needed to shake off this way of thinking otherwise I wouldn't be able to live the life I do have to the fullest. 

Which doesn't mean that I put all the health stuff aside. I won't and haven't. But much more on that below. 

Starting Ongoing Surveillance

Dr. Gwozdz, my primary care guy, ordered all kinds of tests to set a baseline for my post-treatment surveillance. Nearly all of the results were normal, and the 3 that weren't were just outside of the normal ranges. So, he's not concerned about any of it. We'll test again in another 6 months. 

All the Updates

Left Breast and Arm Lymphedema and Right Hand Physical Therapy

Two weeks ago, Manasee discharged me from the lymphedema drainage massage treatment. We had gotten to the point of my knowing what to do (wear compression garments, do my 2x daily exercises and massage, and protect my left arm, hand, and breast from any injury) and being able to do it with results when able. She is confident that I'll be able to increase lifting to 5-8 lbs, but not more, which makes me a bit sad. However, I accept it because I now know what happens when I lift too much.

I had a small flood in my kitchen and tried to flatten my laminate floor before it curled up badly. With my friend Jim's help, I took all the heavy things I own (mostly books, bottled water, pavers, etc.) and placed them on wood on top of the floor. When it became clear that it wasn't going to help, I didn't wait for Jim, and instead carried all the heavy stuff back to whence it came. The next day, I experienced such profound breast pain and swelling that I was down for a whole day. It took a week to fully recover. You can bet that I won't be doing that again.

What remains is the daily balance between compression and burn care (more on that later). 

I've also been working with Lisa the fitter to get set up with more compression bras. There has been a bit of an issue with her external biller saying that they won't file because insurance won't cover them. Turns out, insurance (or at least Cigna) does cover them with the correct codes. I had to call Cigna and go through a bit of a rigamarole there, but they said they would cover them. It's a good thing, too, because I'll need at least 8 of these per year (yes, I do hand wash them and baby them to make them last as long as possible). They cost at least $70 a piece, depending on the model. I'm awaiting a few reimbursement checks.  

Speaking of insurance, my oncology nurse navigator Becca has discharged me. If I need her, I can always call, but since I'm no longer being treated actively, she must close her services. I'll miss her monthly calls. She will help me in November, though, when it comes to requesting ongoing insurance because the divorce COBRA ends in December.

For the arm/hand compression, I've been having a very positive experience with the pros at Luna Medical. Amazingly, my insurance covers 8 gloves and sleeves per year (I don't generally need the gloves except when exercising, but Manasee is concerned with possible swelling.). Luna hipped me to some very cool designs by Juzo that fit me better than the Lymphedivas sleeves. They are pretty comfortable and helpful. I wear them for at least 4 hours a day at home, especially when I exercise, and any time I leave the house (I also wear a silicone bracelet that says "No needles or BP in this arm." People have been really complimentary about them.

The week following my lymphedema discharge, I began physical therapy for the damage done to my hand thanks to the blood draw in the RWJ emergency room. I've had all kinds of nerve testing and x-rays and none show any permanent damage, except mild carpal tunnel. My hand specialist, Liz Henriquez, thinks it is likely soft tissue damage from the blood draw that's causing the tingling and numbness in my hand when I do most things. 

Liz gave me a handful of exercises to do. She also looked at photos I'd taken of my home office set up and the wrist splints I've been wearing. Turns out, I had to get a different splint. She also said that she doesn't expect me to get 100% better. Hoping for 60% is what we're aiming for now. That also makes me sad, but at least I know what life is going to be like for my right hand moving forward. I'll be meeting with her 2x weekly for the next few months.

The Inframammary Fold

Three weeks ago, Dr. Singh took a look at the continuing flare up. I mentioned that Dr. Omene thought there might be a fungal infection. Although he said he saw no sign of one, he gave me another steroid to try that comes with an antifungal: clotrimazole/betameth cream. He also said that if doesn't improve significantly by the next time I see him (at the end of this month), he will take a biopsy. I dread the thought of the lymphedema hell that's going to unleash, but this has been going on for long enough to take a sample of the skin.

Like all the steroids I've used, they turn the affected area much redder. I used it for two weeks, and the burn area did improve. As per usual with all of these treatments, when I switched back to tacrolimus, I underwent a painful peel. 

I've also begun to use cornstarch baby powder in the area (after cleaning first) prior to putting on a jog bra for exercise. So far, that hasn't been a problem (with the exception of some minor peeling on occasion). I'm going to try using it more frequently in an effort to use tacrolimus less often.

All the Rest

I met with Dr. Rihacek, the rheumatologist, last month. He also sent me for all kinds of tests and x-rays. I'll meet with him at the end of this month to talk about the outcomes. But Dr. Gwozdz look at the blood tests and explained a few things I had questions about. 

My next doctor's appointment is with the awesome Dr. Goldstein, my gastroenterologist. I'm overdue for a colonoscopy (a little cancer got in the way), and I'm sure she'll want an update on all the cancer business. Other than physical therapy, it will be nice to get through a few weeks without medical attention.  

I return to work in person (on a limited basis) next week, and I'm excited and a little anxious about it. I'm going to need help lifting heavy things, and that will need to be worked out. I'm looking forward to the hands-on work, as well as seeing folks in person once again. 

Last, but not least, I will take my first vacation in a long while. I will head north and west to visit my very dear friend Jane in Erie, PA. There will be stops at a couple of gluten-free shops on the way. 

As ever, I am grateful for your continued reading of these diary entries. Thanks especially to those who have sent love, prayers, hugs, very silly gifts, very timely gifts, and shared their own experience.

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

The Breast Cancer Diaries, vol. 2, issue 20

The End of the Line for Now, and Other Updates

Yesterday, Monday Aug. 1st, was a tough one. I met with my oncologist to talk about what's next.

Intellectually knowing that I'm out of options as far as medicines go is a bit different than being there in the moment and hearing "Now, we focus on monitoring for changes, signs, and symptoms." It felt a bit odd because I had expected that Dr. Omene might try to sell me trying on another aromatase inhibitor. She did not. In fact, she said that, with my sensitivities, I would likely experience side effects from the medications that she would give me to treat the AI side effects.

She won't be the one doing the monitoring, although the results will be shared with her every 6 months (or sooner, if there's something abnormal). Instead, I'll visit my primary care physician more frequently to order blood tests, monitor all manner of vitals, and generally have him pay close attention to even subtle changes. I have an appointment with him in two days to kick off this regimen. 

There also will be the 6-month interval mammogram nightmare. Since my recent mammogram 2 weeks ago, I've had a really bad burn flare up and lymphedema swelling in the left breast. I've also developed a rash in the inframmamary fold that I'm having Dr. Singh take a look at tomorrow. It's very red, inflamed, painful and itchy. 

Consequently, physical therapy for the lymphedema in the breast is difficult for Manassee to do. We're moving away from every week to every other week because we know what works. Unfortunately, while I'm this inflamed from the burns, very little progress can be made because inflammation leads to swelling and pain. It all depends on healing the burns. 

But back to the oncology...

After I left Dr. Omene at the Cancer Institute, I felt a range of different feelings. There was relief about not having to defend my choices, but at the same time, I realized that we had exhaused the choices that might help prevent future recurrences. It's not a given that just because someone takes one of these hormone blockers they won't have a recurrence/metastasis. From spending time in breast cancer support groups (including one for those of us with lymphedema), there's an unfortunately high number of people who talk about their metastatic breast cancer after having taken AIs, as well as tamoxifen (whether with chemo or without, mastectomy or lumpectomy).

Regardless of my good prognosis, because I had 1 positive node, some cancer traveled outside the breast. It's difficult not to think about that as a ticking clock.

However, after I finished work, I reached out to a couple of very close friends and one of my dear BC sisters to talk through my feelings and cry about it a bit. Today, I'm in a state of acceptance. I've put away the ticking clock for the time being, mainly because no one knows what the future brings.

There is a whole lot of research underway in the field of breast cancer recurrence treatment, and hopefully, someday soon, one I can tolerate will be developed. Dr. Omene said that it was a good thing that I had my ovaries removed. That will greatly lessen the amount of estrogen to tempt any errant IDC cells that escaped the surgery and radiation. 

Otherwise, I've been walking nearly every day for an hour, whether outdoors (if it's cool enough in the early morning) or on the treadmill downstairs. Manasee gave me more excercises to do, and in addition to doing those twice daily, I have been exercising with the yoga ball and lifting 2 lb weights. Now that I've got my lymphedema sleeves and gloves for my left arm, I can start back up with home yoga again. Although, I've been warned to take it slow (as with everything, it seems). 

I wear the sleeves daily, but do not sleep in them. They come in some pretty cool designs. I tried Lymphedivas, because they have so many great designs, but found that the top band tends to roll down. Lisa, my fitter (for compression bras and sleeves/gloves) ordered me some Juzo sleeves. They are more comfortable and never roll down.

Luna Medical is in network for my insurance provider, and they had many more fun designs and colors for the Juzo sleeves. Since I met my deductible early, I'll be set for sleeves for a while. These medical devices have a lifespan of about 6 months. I'll have a few of them to rotate in use to try to stretch the life of them longer.

Later this week, I'll go back to Lisa for more compression bra fitting. 

Lastly, I have mapped out what my return to campus (partially) will look like for the month of September. The plan is to be in the archive two days a week, 4 hours each day. I will start later (at 10) to accommodate all the extra exercises, lymphatic massage, and radiation burn care that must be done in the mornings. I'm really looking forward to being among my colleagues again, but at the same time, I have some anxiety about folks not masking. I'll be wearing my KN 95. 

Thanks, as ever, to everyone who takes the time to comment on these posts. It means a lot to me that you do. Thanks also for all the kind words, thoughts, prayers, good vibes, funny jokes, love, and gifts. I appreciate all of it.

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

 

The Breast Cancer Diaries, vol. 2, issue 19

The Good News and the Not-Great News

Good news first. When I saw Dr. Busono, the neurologist, on Friday, he tested my right hand for permanent nerve damage (from that blood draw in the emergency room 3 weeks ago). I'd never had a nerve study, but had heard it would hurt. It did, but only for the moments when he was stimulating various nerves in my hand and arm.

Prior to starting, the doc wanted to test my left arm as well. I had to tell him 4 times (FOUR TIMES) that he would not be touching my left arm because I have lymphedema in that arm. He finally got it, and we moved forward with the test.

He had me lie down on a low, padded examination table and attached an array of electrodes to my right arm and hand. He said that my right hand was too cold. (I'd been hot flashing on my short drive over to Princeton and Rutgers Neurology, and had been blasting the A/C.) He asked a nurse to fill a glove with warm water for me to hold to warm my hand. Five minutes later, my hand was warm enough for the test.

He used a device to measure the nerve responses as he activated the electrodes. It felt like painful, little shocks. Then, he used needles similar to acupuncture needles to test the nerves around my hand and arm. The pains were momentary and also felt like needle jabs, then shocks. The only one that really hurt was the one in the fleshy part of my hand between my thumb and index finger.

The good news is that there's no permanent nerve damage, and that over time, my hand will feel better. Currently, my fingers and thumb on my right hand are sore and stiff, and go very tingly when I use the hose (even with the trigger locked on the sprayer) to water the garden, when I'm writing with a pen/pencil, and when I'm holding my phone in my right hand. Also, when I'm driving. It doesn't bother me much when I'm knitting or typing.

The not-great news is that the doctor saw clearly that I have carpal tunnel in my right hand. I need to get a splint. I already have an ergo setup at my desks at home and at work, and have been using a mouse with my left hand for 20 years+. I will learn more about what I need to do to care for this syndrome when I meet up with my neuro nurse in a couple of weeks.

Lymphie Deb and the Burns

Until I receive the lymphedema sleeves that Lisa, the fitter, ordered, I'm wearing Lymphediva sleeves. They are very colorful (at least the ones I ordered) sleeves that look somewhat like arm tattoo sleeves. They provide some compression and fit reasonably well, although the end rolls down a little around my armpit despite the gripper material around the top of the sleeve.

I've been limiting the time I'm wearing compression garments on my breast to avoid another burn flare up. Currently, the burned area is much improved, and I want to keep it that way.

To help with the breast compression, I have been inserting Swell Spot chip pads inside my cotton bras, when I'm wearing them instead of the Hugger or the binder (the garment that looks like a tube top from the 1970s). The chip pads are exactly that. They are pre-formed pads with channels sewn into them to move the lymph fluid away from the swelling. Inside the pads are cut up pieces (chips) of polyurethane foam that massage the tissue to also help drain the fluid. They come in all kinds of shapes and sizes for specific uses, especially after surgery where lymphnodes were removed and swelling has occurred.

I insert mine by the underarm, were the seroma was. That area still experiences swelling, and the chip pads, as well as the binder, work well to move that fluid. However, I have to do some kind of compression every day. Otherwise, lymph builds up, which makes Lefty, my armpit, and left arm hurt.

Notes on Lefty

Speaking of Lefty experiencing pain... I figured out why I was getting the recurrence of the lightning/zingers. I was overstretching the pecs and the lats. Instead of stopping when I felt a gentle stretch (as directed), I kept going. No pain, no gain. Well, I was wrong. Pain = more pain later. I have learned my lesson and have been stretching those muscles properly now. Subsequently, no more zingers.

I continue to try to find the balance between the compression and healing the burns. Other than the obvious reasons, I also go for my first post-lumpectomy 3D mammogram on Tuesday (2 days from today). I'm a bit worried about tearing the skin where the burns are. The clobetosol has thinned my skin in the inframammary fold, and it remains sensitive.

For those who haven't experienced it, the mechanics of mammogram machines is that the bottom plate goes right up against the ribs under the breast (where my burn area is), and the tech pulls the breast as forward as possible, trapping it between the top, plastic plate. Then, the tech squeezes the top plate down further than you think possible and asks you to hold your breath as she goes behind a protective area and takes the image. Then, she raises the plate to free the breast temporarily before turning the whole squeezing mechanism to other, uncomfortable positions for additional views of the breast. It sucks and hurts under normal conditions.

Manasee has warned me that it will suck, and I that will swell up afterward. I'll be bringing my most compressive garment (the binder) to wear after the mammogram.

Regardless of how much it will suck, I have to do it because I can't get an MRI (not even sure insurance would pay for it, if it were an option for me). Really, after all this time reading these posts, it surprises you that I can't get an MRI?

Over the years, I've had a lot of metal inserted into my mouth and jaw. Yes, I know people with extensive dental work get MRIs all the time. Believe me, I tried it before I knew any better. It felt as though my upper jaw was being pulled out of my head. Scared the daylights out of me. Suffice to say, I stopped the procedure.

Yes, I know. It's long been on the ever-growing list of things that make me tough to treat.

Other Topics

After calling Dr. Omene a second time, I spoke with a nurse who asked a few questions and said she'd relay the information to Dr. Omene. I haven't heard from the doctor, but I have a follow up appointment with her in a few weeks. I'm not sure there's all that much to say, except that on the whole, I feel much better off the Letrozole.

I have been working to increase the amount of exercise I'm doing each day to lose (eventually) the weight I gained since I was diagnosed last September. I still walk nearly every morning, either outside before it gets hot or on the treadmill (which I like less. I much prefer the elliptical trainer, which will, hopefully, be repaired and returned to me soon).

I also picked up a set of 2 lb barbells to start building strength back in my arms. Manasee said I have to start small, otherwise face the wrath of lymphedema.

A new addition to the exercise routine is another yoga ball. Besides the one I use at my desk, I also have a larger one. This new one is sized so that I can sit on it and have my legs parallel to the floor. It makes doing different exercises more ergonomic correct. In the evening, after I've done my lymphedema drainage massage and exercises, I also do yoga ball exercises targeted to the core. Again, I am starting slowly to work myself up to more repetitions and harder exercises.

Finally, since I've been feeling better, I'm back to cooking/making most of my own food again (just looking at my FB feed, that's easy to see). My goal is to greatly diminish the amount of processed food in the house. I'd gotten used to a lot of pre-made meals and foods, as well as snacky foods after the surgeries because I just didn't have the energy or interest in cooking for myself the way I typically do.

Now that I have lymphedema, I have to watch all kinds of stuff that I didn't previously. Like salt. Also, now that I'm menopausal, I have to watch my cholesterol. During the month that I was on Letrozole, my cholesterol rose significantly. I'll be tested again in 5 months. My guess is that it will be closer to my normal by then. (My triglycerides are good and my HDLs are high.) While I haven't given up cheese, I've cut way back on how many times and how much I eat of it per week.

I'm still on track to begin returning to work in person in September. It will be partial at first, but I'm really looking forward to being back in the archives and on campus in general. I'll be wearing my KN95, which should help with the dust allergies. It will be especially good to see my colleagues in person once again.

Last, but not least, I made a decision to get out and live my life (more than I have been, and much more like I usually do). I've made plans for two road trips. One small one to visit my dear friend Jane in Erie, PA in September, and the other to have a big adventure driving through New England to Prince Edward Island, Canada with another dear friend, Joy, in October.

Thanks, as ever, to everyone who takes the time to comment on these posts. It means a lot to me that you do. Thanks also for all the kind words, thoughts, prayers, good vibes, funny jokes, love, and gifts. I appreciate all of it.

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

The Breast Cancer Diaries, vol. 2, issue 18

When It Rains... or Running the Gauntlet
You know how it feels when you don't know where to begin because there's just been so much going on, and it's a bit overwhelming? That's how I've been feeling when catching up with folks I haven't spoken with/written to in a while. It's very much how I feel writing this BCD entry right now.

There's some catching up, an emergency room visit, and new issues. Told you there was a lot.

No More Cancer Drugs for a While
The last time I wrote a full issue and not just a Quickie for Facebook, I was still on Letrozole. Since then, the side effects had become so painful and/or difficult that they interfered with my being able to keep on with daily living. After I called and spoke with her nurse, Dr. Omene took me off the Letrozole for 2 weeks and told me to call her on July 5 (yesterday). I left a message yesterday, letting her know that I am much improved.

She hasn't yet returned the call, but when she does, I will let her know that I will be taking a break from trying more medications. At least a 6-month break to let my body heal from the 2 surgeries, radiation and its burns, two separate trials of medications that my body couldn't tolerate, and lymphedema. It's been a rough go since last September, and hoo boy could I use a rest.

After stopping the Letrozole, at first, there was little difference. But after a week, I started feeling better. Today, more than 2 weeks later, about 80% of the joint and muscle pain is gone or greatly lessened. There's still issues with my right hip, wrist, and shoulder, and my left thumb. But they are not nearly as bad as they were 3 weeks ago. I did make an appointment to see a local rheumatologist, though because one of the side effects of Letrozole is arthritis/RA.

The hot flashes are much improved. There are far fewer and, for the most part, they pass in about half the time. They aren't as intense, either. If I must, I can sit through one without disrobing or sticking a fan in front of me. They are nearly back to what they were prior to the Letrozole.

I'd been having headaches nearly daily. Last week, I didn't have a headache until Sunday, when the weather changed.

Energy was at a premium. Doing anything was a real struggle, especially sleeping. I might have slept 2-3 hours total between waking frequently from hot flashes and/or the joint pain. It was brutal.

I'm glad that more people don't experience it so badly. Mind you, more than 1/3 of people who take aromatase inhibitors stop due to side effects, so I'm not alone. Still, it doesn't make it any better. I do want to know where all those folks are. It doesn't seem that anyone is doing any studies on how they are doing (Mom looked).

Importantly, I had been sinking into a pretty bad depression. Beyond blue. I hadn't been in a funk like that since 2003. Thankfully, that lifted pretty quickly after stopping Letrozole, and now I'm back to feeling much more like myself.

Lymphie Deb and the ER
A week ago, I had a pretty scary experience. I'd just taken a decent morning walk around the neighborhood and started watering the garden when I had a pain in my left arm that I'd never experienced before. It was swelling and feeling tight from it, moving up my arm from my wrist. I thought I might be having a heart attack. Instead, I was experiencing my first lymphedema swelling in that arm.

The way I experience lymphedema in my breast is very different, so I was completely taken off guard. I knew I was seeing Manasee for physical therapy in a couple of days, so I waited to contact her. In the meantime, I found a YouTube channel created by an oncology physical therapist who specializes in breast cancer and lymphedema. I used some of her methods of lymphatic drainage massage to some success.

When I saw Manasee last Friday, she measured my arm in a handful of places and saw that it was somewhat larger than when I'd started with her. She put in a request to Dr. Hopkins for prescriptions for arm sleeves and compression bras (I hadn't gotten a prescription before I went to Lisa, the fitter, last time.).

She also was very concerned at the speed of my swelling and asked me to call Dr. Omene's office while I was receiving treatment from her. I had it on speaker, and Manasee spoke with the nurse about what was happening and her concerns. The nurse contacted Dr. Omene, and then called me back 40 minutes later, just as I was arriving home from PT.

She said that Dr. Omene wanted me to get to the emergency room right away because I might have a blood clot in my arm, and they needed to check. I hadn't eaten yet that day, so I told her that I was going to have something to eat before leaving for Robert Wood Johnson hospital. I'm glad that I did because I didn't get home from that trip until hours later.

After going through a screening process, I was taken back to a relatively quiet section of the ER (with the exception of a LOT of beeping monitors). I was wheeled to a gurney stationed in front of the nurses' station to wait. It wasn't long before a hospital admissions person walked over, pushing a computer atop a mobile standing desk. She reviewed my information and got me further into the system than the front desk nurse did at the screening area.

Not much later, a doctor came to see why I was there and put in the orders for the Doppler ultrasound procedure. He also put in for blood work, although I'm not sure why, but I guess for a potential blood clot situation, you have to cover your bases.

A nurse came by to take blood. When he inserted the needle into my right hand, he hit a nerve, and I felt as if all the electricity in the room went through my hand and out my pinky. I was in so much pain that I nearly fainted (and I'm not a fainter or someone who can't handle pain).

(Today, I'm still having pain in my right hand, tingling, and pins and needles in my fingers. I will have someone take a look at it because that's not right. Yesterday morning, I could hardly write with a pencil. Today is better, but there's still pain. I've been using Arnica gel very frequently to bring down the swelling and bruising. It has been effective.)

Afterward, I was taken to another part of the hospital to the Vascular Lab for the Doppler ultrasound. There, I was wheeled into a curtained cubicle by a nice tech who told me what she would do. She asked me to remove my shirt (as I had a compression garment on underneath, I was pretty well covered) so that she could take the measurements of my vascular activity and check out the state of my veins and arteries in both arms, around my shoulders, and under my arms.

She pushed pretty hard into my left armpit, and I knew I'd be feeling that later. But, it didn't take longer than about 10-15 minutes to complete the whole test. No blood clots or any other issues, thankfully.

Then, they wheeled my gurney all the way back to the ER, where the waiting began. Well, waiting and panicking because there were two other people on gurneys behind me with no masks. No masks in the ER while our numbers here in Jersey are rising once again. I nearly checked out AMA, and pestered the nurse who jabbed me about my blood test results. Eventually they came (everything was fine), and the doctor released me.

I'm glad my medical team was cautious, but now my hand really hurts, and I'm concerned that there may be permanent nerve damage.

The last bit about lymphedema -- heat and humidity makes it worse. I am counting down the days until fall.

The Burns
While recuperating from these events over the weekend, the burns flared up (when it rains...). I'd been using compression often because the burned area was doing really well. (Oh, the hope!)

I guess it was only a matter of time because Sunday night, it started getting itchy, red, and bumpy as it does at the beginning of a flare up. Continuing the tacrolimus, I waited until Monday to restart clobetasol because it really does a number on my skin, but it has brought down the bumps and gave me some relief. I'm going to return to the tacrolimus to prevent the big, painful peel that happens with clobetasol. Fun.

Lightning Strikes Again
So, this morning, Lefty must have been feeling left out because I awoke to feeling lightning strikes in my breast again. It's been months since these pains! This time, they were only in one spot under my breast, where radiation scar tissue is located. When pressing in the area, it feels like a horizontally oblong lump about an inch long. There are a couple of these in the inframmamary fold, along the underside of the breast, under the burned tissue.

When I went to see Manasee today at noon, she called the pains "zingers," which is a lot less cumbersome than saying "lightning strikes," and expresses the sentiment pretty well. I had been having them throughout the morning. I felt a couple while she was doing her manual lymphatic drainage massage.

She told me that I need to massage my scars, both in the armpit and along the side of the breast. The scars are tightening everything up, which may be causing the zingers. I had been doing it, but when I had to switch up exercises, I forgot to continue. Suffice to say, when I arrived home today, I wrote myself a note on the lymphatic drainage exercises sheet that Manasee gave me last week after the whole arm swelling debacle.

I definitely feel as if I've been running the gauntlet. Thankfully, I'm not in the same emotional space I was a couple of weeks ago. I have come to a place of acceptance with the lymphedema and will learn how to wear compression sleeves. At least they won't cause my radiation burns to act up.

It's all been a bit exhausting, frankly. Taking a break from medication side effects is a welcome change. Now, if the rest of my body would get in line, I'll be set.

Thanks everyone for all your kind thoughts, good vibes, hugs, private messages of hope, jokes, adventure days, and love. I always get so much out of your comments and feedback, whether in the Comments section below or privately.

Remember to get your screenings, whether mammograms, colonoscopies, or whatever you need. Early detection is key!

The Breast Cancer Diaries, vol. 2, issue 17

Caveat: You might want to settle in with a nice cup of tea and a cookie. This one is long and detailed.

Almost a Month on Letrozole

It's a milestone and should be marked. In the past two weeks, some side effects have intensified while others have disappeared. First, the good news, the heartburn and nausea are gone. Also gone are the mood swings that I had been dealing with after the oophorectomy. In general, my mood has been much better and very even since having my ovaries out, despite the challenges you'll read about below.

Joint Pain

I thought it would have taken longer for the serious joint pain, but it arrived last week. The worst of it lives in the right hip and shoulder. Starting two days ago, the knuckle of my left thumb has been fairly stiff and has required frequent bending, flexing, and massage to loosen up. I switched back to my left hand for mouse use because the right wrist pain became too much. I'm also feeling it in my elbows and knees. Most days, the pain is greatest early in the morning, especially in the hip and shoulder (no matter which side I'm sleeping on). I make lots of noises getting out of bed. There's cursing involved.

What helps the most is movement. If I'm sitting (for work, etc.), I get up and walk around every 15 minutes, and flex my joints. It's also more comfortable to sit on an exercise ball than in a chair, although I switch them after a few hours. Yes, I do bounce and roll from left to right on the ball to keep from stiffening up.

I keep a grip strengthener for my hands on my desk and in my car. For many years, I've kept one in the car for squeezing during traffic lights and other stops. It's calming and very helpful with any hand-related issues.

Yoga stretches also help, although the hip pain takes a while to ease. The other tricky part is when I'm dealing with a radiation burn flare up, which has been the case for weeks now. More on the flare up later.

Way Too Much on Hot Flashes

The hot flashes are much hotter now and are lasting about 3-5 minutes most times. For a couple of days this week, I documented the time and duration for each flash. Consequently, I can predict some of the times when I'll have them. During the daytime hours, I average 1-2 per hour.

If I have ginger, such as in a ginger soda, that will bring one on almost immediately (but I will not give up ginger because I enjoy it in food, and it calms my stomach like nothing else). Nearly any time I eat, I'll have at least one hot flash. Although, when I'm drinking my cold smoothie (with ginger), I don't have one. Drinking water or anything cold, especially when it starts, helps.

My bestie, Joy, gave me a truly useful gift when I had the oophorectomy -- a fan worn around the neck. It has vents along two arms (it looks a bit like a headset, but horizontal) that send air straight up to cool my neck and head. I keep it downstairs to use when I'm eating at the table or knitting on the sofa. I also have worn it on a walk or two.

While it's very effective at cooling my head, I'm now feeling the hot flashes from my waist up. In fact, about half of the time, that's the sensation -- intensifying heat rolling up my body (the other half of the time, the high heat hits me all at once). The rolling feeling is a bit of a warning and gives me time to turn on a fan or take off a layer of clothing before I heat up in earnest.

I say "layer" because I've had to keep the a/c on higher than ever due to all the hot flashing and the lymphedema (more on that later). All the library/archives cardigans have come in handy, though. Whichever I'm wearing will be taken off and put back on all day and night. It's like having an broken internal thermometer swinging from hot to cold.

If I experience an emotional stressor, I'll have a hot flash. Almost every time I share in a recovery meeting, I have one. It also happens when I'm on work Zoom meetings. Thankfully, I have a pretty powerful fan in my home office blowing cool air when I need it. I'll probably wear out the power switch from turning it off and on, and off again several times an hour.

I have at least 3 hot flashes throughout the night, and they wake me up. I'll turn on the ceiling fan, kick off the sheet and light blanket, and wait it out before trying to resume sleep. Sometimes I can, sometimes I can't get back to sleep.

Otherwise, it's hard to tell if I'm having one when I'm outside walking or if it's just the exertion and ambient heat. I'm much more sensitive to heat than I had been previously (give me a snowstorm any day). I've begun getting out earlier for walks, although sometimes, I'm just so exhausted that I don't get out of bed until 6.

Fatigue

There's my transition to writing about fatigue. Whether it's the Letrozole; still healing from 2 surgeries within six months (it's now 8 months from the lumpectomy and 2 from the ooph); radiation treatment and the burns that don't want to heal; lymphedema; interrupted/little sleep; or, more than likely, all of the above, it's been a real struggle to deal with the fatigue. Some days, I wake up and have loads of energy. I feel like ME again. Then, I crash in the afternoon and evening, or it hits me a day or two later. Then, I'm horizontal for as long as I can be. The hip pain increases when I'm horizontal, though.

Last week, in an effort to retrain my body, I changed to my old work schedule, while working at home: Monday and Wednesday 8-4, Thursday 8-12. I was completely done by the end of the days. I crashed on Friday and Sunday. I'm hoping that my body evens out and gets used to it. This week, it was a bit better, although (more on this later) the radiation burn flare up has been particularly painful and required more care.

The Burns and Lymphedema

Well, there's not a lot to say except that I've had an ongoing flare-up since the last time I wrote one of these BCD entries (May 27). Some days are better than others. Today is not one of those days.

I was back on clobetasol for a two weeks, then tacrolimus, then clobetasol. This week is a tacrolimus week. I've endured yet another big peel. It's red and angry in the inframammary fold these days. Today is one of those days when I feel like I'm on fire under my left breast.

Maybe it's the heat. The burns definitely improve the more I'm on my back exposing the fold to circulating air. Maybe it's the compression to deal with the lymphedema. I'm not sure. But, what works for the burns doesn't work for the lymphedema and vice versa.

Manasee, the physical therapist, told me that hot weather increases lymphedema swelling. She also said it worsens when the burns are bad because there is increased inflammation. As a result, I have to do lighter and less frequent compression to help with the burns. When they look like they are improving, I use more compression. Then, the lymphedema really improves, but the burns flare up harder, usually the following day.

It's frustrating and painful. It's really frustrating because the burns had really been improving. It's a big challenge because compression works well on the lymphedema. There's big pain relief in the left breast and arm, as well as improvements in range of motion in the arm when I'm able to use the tighter compression.

There's also the matter of getting out and walking in the warmer weather. Sweat causes problems with the burns. I try to get out earlier in the day (as I mentioned earlier) to avoid the issue, but sometimes, it's not possible.

Just to circle back to the hot flash discussion. Wearing the compression gear and dealing with hot flashes sucks. It provides an extra layer of insulation. I generally just take it off when the flash happens, and put it back on after it passes. Although, sometimes, it sets off the burns at the same time. In that case, I stop the compression altogether for the day. As Manasee says, some compression is better than no compression.

Closing Thoughts

Sometimes, I don't want to share this kind of detail with you, Dear Reader, because I know it's difficult to read, especially for those who know and love me well. But, if you've been reading along since the beginning, you will remember that I lean heavily on "this too shall pass," or what the Buddhists refer to as "impermanence." It won't always feel this way.

And, sometimes it just sucks until it's done sucking.

Getting out into nature helps. Just going outside my house to look at the garden (and occasionally do a bit of clean up) does wonders for me. Meditation and online recovery meetings are key. Talking with friends and family, and visiting with folks in person go a long way toward taking my mind off my physical self.

As you know, I've been through much worse. Although, I won't lie to you. Sometimes, it's a lot. And, sometimes self-care looks like a plate of nachos and a night of watching "Whose Line Is It Anyway" while knitting.

Thanks everyone for all your kind thoughts, good vibes, hugs, private messages of hope (I'm looking at you, Valerie Messina), jokes, adventure days, and love. It makes my day when people comment on these posts.

Remember to get your screenings, whether mammograms, colonoscopies, or whatever you need. Early detection is key!

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.