Road to Singapore

About a month ago I was contacted by the President of the Breast Cancer Foundation of Singapore. She had discovered my book on Amazon (Beyond the Pink Ribbon: What I Wish I Knew About Breast Cancer Before I Got It) and wanted to know if I would be interested in participating in two events with their foundation. I was, of course, honored to be asked and, after researching their organization, agreed to do both.

One of the events is to be a speaker (pre-recorded message) at BCF’s Breast Cancer Awareness gala in October. The second, more-recent event was to participate in a panel discussion as part of International Women’s Day.

For those of you who know me well, being on video of any kind is not something I will readily sign up for, but I am really proud of this opportunity, as well as the final result. The moderator of the event is Singapore’s only female race car driver (Formula 1), Claire Jedrek. Joining me on the panel were Julianne Danielle Lim, ex-private banker, founder of Bold Strong Grateful Inc, and a breast cancer survivor, and Dr. Trishna Ramesh, breast imaging radiologist and advocate.

Here is the link to watch the event: https://www.youtube.com/watch?v=D3iJaYepbIA

I encourage you to watch all of it, as there is a lot of great information shared, but if you want to skip ahead, my first speaking part is at around 21:25. Yes, I was nervous. And tired! It was 10 pm here, while 10 am in Singapore (Thanks Daylight Savings Time). But I’m pretty happy with how it came out and I am excited for the upcoming opportunity in October.

Many thanks to Staphnie, Claire, the fellow panelists, and the entire staff of Breast Cancer Foundation of Singapore!

IMDb: Road to Singapore (1940)

One Year

A year ago today I was at the University of Pennsylvania Hospital in Philadelphia having surgery for my breast cancer recurrence. It’s so hard to believe it’s been a year already. 2020 was one of those years that flies by and feels like like 100 years at the same time. So much has happened in the world that this anniversary wasn’t even on my radar until I was updating my 2021 calendar.

David and I had gone down to Philadelphia the day before, trying to enjoy ourselves for a bit and enjoy a nice dinner before I had to start fasting. The day of surgery included a whole lot of hurry up and wait, as we waited about 4 hours or so before things got started. Having a procedure done at a big teaching hospital is a very different experience than our local hospital, including lots of attention from nurses, anesthesiologists, residents, and surgeons. I did have two surgeons for this event – the oncology surgeon removed the cancer, and the plastic surgeon made everything look pretty.

The surgery went much longer than planned because they found more breast tissue than they expected. The plastic surgeon had expected to do a simple liposuction and remove the excess skin, but the prior surgeon had left behind 1-2″ of actual tissue. I wrote at the time that my Penn surgeons were shocked and horrified by this, but since that time, I am finding that it is more and more common. Most surgeons are in there to just remove the cancer, and that’s it. This makes no sense to me, especially when you ask and expect a specific result, AND especially when you are having a prophylactic breast removal. If there’s no cancer in it, how does the surgeon decide how much to take? All I can say is, if you ever need a mastectomy and expect a certain result without reconstruction, definitely go to a big city hospital and make sure you get someone who understands what you want.

Some day I may be brave enough to share before and after photos on this page, but not yet. I know women who share pictures very comfortably, but every time I think about it, I chicken out. Right now, my chest is enormously improved (and flatter) than after my first surgery. The only thing that takes some getting used to is that my rib cage is pretty exposed on my right side (the cancer side). To ensure I had clear margins, the surgeon was extra cautious and removed as much as she could. Now I basically have a rib cage with some skin over it. There’s not much, if any tissue, in between. So sometimes I freak out, thinking it’s a lump, and then I trace it and go “ok, it’s a rib! Whew.”

Following my surgery, I had drains to care for at home for a few weeks, a most uncomfortable situation. But outside of that, I am grateful that I did not require chemotherapy or radiation. I am just on my daily dose of Aromasin for 5-10 years. So far, the side effects are completely manageable.

So January 21, 2020, I restarted my clock. One year down.

The longer you can go cancer free, the better. I made it 7+ years after the first go-round. I’d love to break that record, and then some. But the fear is always lurking.

At dinner the night before my surgery in Philly. (City Tavern)

IMDb: One Year (2010)

Motivation

Back in April, I posted about my progress with finally making exercise a priority. When I think about all the things that I have worked on to improve my health, the one area that I always fell short on was exercise. Over my lifetime, I had never been able to stick with an exercise routine consistently or for any real duration. I don’t like to be hot, I find most exercise to be boring and unproductive, and there are a hundred other things I’d rather be doing.

Like most of us, I knew that exercise benefits overall health. It helps with weight loss, improves mood (or so they say…not historically MY experience!), reduces your risk of heart disease, strengthens your bones and muscles, and actually helps you live longer. These alone seem like pretty good motivating factors, but did not motivate me.

Exercise also helps lower cancer risk. In fact, it is associated with lower risk of 13 different cancers!

Diet and exercise are the top two things you can change to lower your cancer risk (well, right after you quit smoking, if you still do that…). When you lower your weight, you are getting rid of excess fat that make all that extra estrogen which contributes to risk of some breast cancers. Extra fat cells also contribute to chronic inflammation, another risk factor. Physical activity regulates the hormones and insulin levels that can fuel breast cancer growth, including lowering stress hormones. It also strengthens your immune system, allowing your body to more effectively fight off illness and disease.

And still, despite knowing this, motivation was lacking for me.

As I stated in April, the coronavirus really helped motivate me. I wanted to strengthen my lungs and my immune system. And quarantine allowed for the time to build a routine. I am so excited to report that today is the *100th* day in a row of exercising for me! Yep, for the past 100 days, I have walked on my treadmill (3-4 miles a day), hiked, and/or done major household projects that allowed me to hit my step & move goals. Do you even know how huge a milestone that is for me? And now that I’m doing it, I can’t imagine NOT doing it.

I’m down about 8-10 pounds since quarantine started (depends on the day), and I feel stronger, with greater endurance. I have an appointment this afternoon for a dexascan to check my bone density and I’m interested to see if there’s any improvement, given the exercise. Of course, my meds are lowering my density, so I’ll be happy with status quo as well. Stay tuned for those results!

As for those household projects? I have mowed, weeded, mulched, planted, and weeded again (like every day!). I have power washed the entire house and fencing. I have washed windows (still some to be done), and scrubbed the entire second floor front of the house from the porch roof. I have painted doors and trim around the house. All great exercise and often done after my 3-4 miles, and the house looks great, may I add!

Sorry if I sound like I’m bragging. Ok, I am a little! I just never thought I’d ever figure out how to make the exercise thing stick. And I did. It took me a long, long time, but it’s never too late for any of us. Check out April’s blog for more tips, and just start, wherever you are in your health journey. And then start again when you lose motivation. And again. You can do it!

IMDb: Motivation (2016)

Genetic Me

Back in early March (which seems a lifetime ago), I met with a genetics counselor at Penn Medicine. I had blood drawn for testing and have been waiting for the results.  Last week I received a call from the counselor with the results of my testing.

The good news is that there was nothing of significance found, only 2 variants of uncertain significance, or VUSs. (I can’t help but think of ROUSs… from Princess Bride… Rodents of Unusual Size!) It is great news for my family to know that there are no genetic mutations being passed on.

If there is to be any down side to this news it was my hope to maybe have an answer as to why cancer would take root in my body on three separate occasions. I knew it was unlikely that anything would be found. There were really no patterns in my family history and I know that only 5-10% of all cancers are due to genetic mutations. That leaves 90-95% due to unhealthy diets and lifestyles and environmental influences.

Without a magic answer, so to speak, I’m left to continue to examine and re-examine all those other influences. Diet, exercise, alcohol intake, stress levels, toxins, and more. As if I haven’t examined that enough in the past 12 years, but I will continue trying to live the healthiest life I can.

For those who might be interested in the VUSs, they are as follows:

APC – associated with colon cancer, which has existed within my family on a limited basis. Also associated with significant numbers of colon polyps, starting at an early age.

BARD1 – has been reviewed for possible links to ovarian and breast cancer. According to recent studies of this gene, along with a few others, it does not appear that this particular gene is a risk factor for ovarian cancer. There is a possible association with increased risk of breast cancer, but any studies have been quite small and without control patients. Additional research is needed on this particular genetic link.

A VUS designation means that there is limited and/or conflicting evidence to suggest the mutation may cause a disease. My counselor said I can check back with them on an annual basis to see if the classification of those two mutations might have changed at all. She indicated that, most of the time, they are usually downgraded over time and additional studies.

Based on these results, no clinical changes are in order.

For those of you who might consider genetic testing, please note that it was super easy, very interesting, and not terribly expensive (in case you end of paying out of pocket).

 

IMDb: Genetic Me (2014)

Star Trek (?)

You would think, with all the time on my hands these days, I would have more time to write. Somehow, despite social distancing and nowhere to go, my days fly by. Maybe that will change over time, but I have to be honest and say that March whooshed by for me. There’s so much to write about but, for now, I’ll just provide an update on my health journey, since so many have been checking in and asking. (thank you, as always)

Back on March 18th, I was supposed to have a follow up appointment with my plastic surgeon, who is in Bryn Mawr. It’s a 2-3 hour drive, depending on traffic, and it would have required at least two stops (one each way) at the rest area for a potty break. Since I was feeling pretty good, I thought it would be more prudent to cancel. I was intrigued when they said that they were working on a way to do virtual appointments and that they would be in touch. The thought of a virtual doctor’s appointment seemed very 21st century and a step towards the future. I had visions of Star Trek and was curious how it would work. I wondered if I would have to pass my phone over my scars so he could closely inspect them. Would there be a way to do vitals using the apps on my phone? And so many other questions.

They called me the day prior and instructed me to download Vidyo and said I would receive a link from them the morning. My appointment was at 10:30, and I had to give them a window of 10:30-11:30 for the appointment to start. New technology! I was ready!

Imagine my disappointment when my appointment ended up being nothing more than a phone call. I didn’t even get to try out the new software! My Star Trek experience was not to be. We spoke briefly about pain (I only still have sensitivity where my drains were), scar care (silicone gel and massage, check), and if I was happy with the results (I am). He then said that I no longer needed to see him, and that was that.

* * * *

In other news, today is Day 24 of taking my aromatase inhibitor, Aromasin (aka Exemestane). I’ve been doing much better on this than I did on the Femara way back when, and only just recently started experiencing a few side effects. Specifically, I am starting to deal with night sweats and a bit of insomnia. These go hand-in-hand since you can’t really sleep when you sweating then freezing because you kicked the covers off, and back and forth through the night. It hasn’t been to the magnitude of 2013’s experiences, and I’m hoping it doesn’t get any worse. When I do sleep, I am having crazy bizarre dreams, and then remembering 2-3 of them every morning. Normally I don’t recall any of my dreams. I guess this is neither good nor bad, just different.

I was scheduled for a Dexascan on March 25th to check my bone density, since the AIs can cause osteoporosis, but I canceled that appointment, as well. I didn’t bother to reschedule it yet since I didn’t want to reschedule multiple times. We’ll see how long this social distancing goes on. My oncologist called me last week to check in and said she’ll see me in May and that I can do the Dexascan in June. It’s really just a baseline so we know if the Aromasin is impacting me over time. It’s not like my bones will disintegrate in a few months time.

Otherwise, there is not much else to report on the health front. I’m feeling good and doing everything in my power to remain so (more on that in a future post).

Stay well, my friends! Live long and prosper!

 

IMDb: Star Trek (1979)

One Month Out

One month ago today, David and I were in Philadelphia, impatiently waiting for my local recurrence excision and revision surgery. My 90 minute surgery ended up taking closer to four hours, as my surgeons encountered more than they bargained for when planning the surgery. It’s been a learning experience ever sense.

On top of learning that my first surgeon had left so much breast tissue behind, I learned that my drains were not properly handled the first time. When I explained that they were only in for two days the first time, all of my medical practitioners sort of rolled their eyes with incredulity. Two days was not enough to measure the fluid to hit the criteria for removal. So, was it laziness or incompetence again?

Scar care? Not discussed at all first time around. This time, I am learning all about silicon gels and scar massage. Silicone gel (or sheets) is used to soften and flatten the scars. I’ve only been using it for a few days and I already see an improvement. Plus, because the scars are soften, I am finding that my chest is not as tight and I have more range of motion. It makes you wonder why this would not have been discussed with me previously. Again, lazy or incompetent?

I have not yet learned how to do the scar massage, but it was mentioned at my last visit to the plastic surgeon that they would be discussing it at my next appointment in mid-March.

Stretching exercises were also provided to me by the plastic surgeon to help return my range of motion to normal. I’ve been doing this (mostly) religiously since provided. First time? You guessed it. Not provided, and, in fact, I ended up at physical therapy and occupational therapy as a result. *sigh*

I’ve gotten back to walking to the treadmill each day, although not to the duration I was pre-surgery. I’m trying to add a minute or two each day to work my way back up. You don’t realize how much surgery takes out of you until you try to do what you did before. I was easily doing 45-60 minutes each day, using inclines; I am now at less than 20 minutes, with no inclines. But something is better than nothing, and I’ll keep working at it.

Sleep is still a challenge. I’m still not quite back to being able to sleep on my side. I have to find the sweet spot between not all the way on my back and not all the way on my side, but then my spine gets twisted so I can’t do it for too long. Sleeping on my back only results in a sore back by morning, but I’m managing. I’m thinking in a few weeks I’ll be back to normal.

This week I went to get that pesky mole removed from my sternum. The dermatologist agreed with my oncologist that it looked abnormal, but she didn’t seem too concerned that it was a melanoma or anything. She did remove it, though, so now I have a new little sore spot in between my two breast scars. It’s like Morse Code…  —- * —-  (The letter K). 🙂

Upcoming: Next week I go for my “non-urgent” ultrasounds of my thyroid and my uterus. (Prayers, please, that all is normal with both.) March 5th I’m back to Philly to meet with my UPenn oncologist, and March 18th, it’s back to the Plastic Surgeon in Bryn Mawr for a check up.

Thanks for following along, and thanks, as always, for your support and encouragement!

 

IMDb: One Month Out

Risky Business

For those of you who have read my book, Beyond the Pink Ribbon, you know that I have spent a lot of time and energy trying to understand all of the risks associated with breast cancer. So, when my cancer came back, I really needed to understand why. Unfortunately, there isn’t as much information available on recurrence risks, but here’s what I found…

• Size of tumor
  It stands to reason, the larger tumors carry the greatest risk. My tumor was 8 cm, which is about 3 inches long. So it’s pretty big by most standards.
• Involvement of lymph nodes
  If you have invasion of the cancer into your lymph nodes, recurrence risk is greater. Despite the larger tumor size, I was lucky to have only micro-metastasis in my lymph nodes. So it wasn’t significant at all.
• Positive margins, or close margins
  When your cancer is removed, the pathologist looks for clear, or negative margins, which means that all the tissue around the cancer was clear. Thus, they got all of it. If you have a positive margin, or really small margins, you are at greater risk for the cancer to return. This makes sense, since, technically, they may not have gotten it all the first time. In my case, my margins were all good.
• Lack of radiation following a lumpectomy
  This did not apply to me because I did have radiation. (And, allegedly, I had a mastectomy, not a lumpectomy, but more on that in a minute.)
• Younger age
  Women who are under the age of 35 have a higher risk of recurrence, I’m guessing because they have a lot more time to get it back. I couldn’t really find a reason.
• Inflammatory breast cancer
  Women with this type have a higher risk of recurrence. Again, this did not apply to me.
• Certain types of cancer cells
  Women with “triple negative” cancer have cancer that tests negative for estrogen receptors (ER), progesterone receptors (PR), and excess HER2 protein. My cancer was ER+, PR+ and HER2-, so I was not “triple negative”.

So, really, other than the size of my tumor, none of the other risks apply.

But let’s go back to that whole mastectomy / lumpectomy thing. By definition, a lumpectomy is the removal of the tumor and some surrounding tissue. A mastectomy is removal “of the entire breast”. So with a lumpectomy, you would continue to have imaging done, like mammograms or MRIs. With a mastectomy, there is no imaging; you only have physical exam to go by. But, since you should essentially be skin on muscle, a recurrence would be easy to identify. By not removing “the entire breast”, I sort of had a lumpectomy, but without the benefit of imaging. It put me at greater risk of a recurrence because of a) the amount of tissue left behind, and b) the lack of imaging.

For the record, the amount of tissue left behind…

Right breast: 14.3 x 9.7 x 2.6 cm (5.6 x 3.8 x 1″)
One whole inch deep on the side with cancer!!

Left breast: 18.5 x 9.1 x 3.7 cm (7.3 x 3.6 x 1.5″)
What would be the point of prophylactic mastectomy of the non-cancerous breast to leave THIS much behind?

You won’t find this risk on any risk list, but perhaps it should be.

 

IMDb: Risky Business (1983)

Drained

It was an early morning departure for Bryn Mawr this morning, where I had an appointment at the plastic surgeon’s office to (hopefully) get my drains removed. I had met the required threshold of fluid output for one day, and was sure I would achieve it the second day, so the appointment was made. There was only one snag… one of the drains had stopped and it’s output was 0. Until this morning, when it unclogged and let out 18 ml of fluid. So, of course, since the blockage had prevented anything from being released, it was determined to be safest to keep that particular drain for a few more days.

But, hey, at least I got one removed! It was still worth that 5 am wake up and 2 hour drive. As a bonus, I got to spend 8 hours with my bestie, Leann. We had hours filled with great conversation, and a wonderful breakfast, to boot. (If you’re ever in Bryn Mawr, I highly recommend the Turning Point. We will certainly be returning there next trip!)

For those of you unfamiliar, drains are long tubes that are inserted into your body to collect excess fluid that can accumulate in the space where the tumor or breast tissue was. The tubes have plastic bulbs on the ends to create suction, which helps the fluid to exit your body. After the drains are inserted, they are stitched to the holes where they exit your body.

They are not supposed to be removed until the output is less than 30 ml over a 24 hour period, for two consecutive days. The bulbs are emptied into a container a few times a day and the fluid measured and tracked. My 18ml this morning messed me up because that was skewed by the prior clogs. If you assume the same output for another 12 hours, we were looking at 36 ml. So better safe than sorry. It was interesting to watch the Nurse Practioner’s face when I told her that, for my first surgery in 2012, my drains were removed before I left the hospital, only 2 days post surgery. She seemed a bit surprised about that… it’s right up there with the amount of breast tissue left behind. The more I learn, the more I realize how messed up that first surgery was. 😦

The fluid is sometimes red, sometimes an amber-is color. It contains some weird stringy white stuff that I can only assume is tissue of some sort, And when this morning’s blocked drain finally released, it had along with it a long, worm-like clot that had to be about 10 inches long! It was gross, but interesting!

My drain tubes protrude from under my armpits, but more towards the back, so I’ve been a bit of a contortionist trying to get them re-bandaged after my showers each day. In the shower, there’s nothing to attach them to, so I actually tie a ribbon around my waist and attach them there so they aren’t just flailing. Once dressed, I attach them to my clothing; but I have to be careful not to wait too long to use the bathroom when they are attached to my pants! Everything with drains is a bit of a process and feel like I’m constantly attaching, removing, attaching, removing…

They aren’t super comfortable to sleep in, so I’ve been sleeping on the couch, on my back. It would be crazy uncomfortable to try to sleep on my side with the drains in. Now, at least with one removed, I can hopefully return to my own bed and side-sleeping!

Removal was uncomfortable and a bit painful for about 30 seconds. She slapped a band-aid on the hole and that was that. Leann and I were both curious how much tubing was inside my body, so the NP showed us. It looked to be about 6-8 inches. It was removed quite quickly as I was doing some deep breathing. It burned for a bit and now is just fine. The second drain will be removed by my oncology surgeon on Monday when I see her for follow up.

While I am a bit disappointed I am not free and clear, I also understand the benefit of not rushing on the second drain until we are certain it’s good to go. And, after seeing that big clot, I’m thinking there’s some more fluid to come. I think I can make it to Monday!

Thanks to my wonderful friend for driving me to and fro, and for the wonderful company!

 

IMDb: Drained (2012)

Pathology

My surgeon called me Friday to give me the results of my pathology report, and I received an official copy today. To quote the doctor, things were “very favorable”. Whew.

The tumor was 1.6 cm, about the size it was when identified. So I was relieved there was no major growth. With my first surgery, the estimated size was much smaller than the 8 cm actual size, so I’m glad we didn’t have a repeat of that.

The excision results: “Soft tissue with biopsy site showing infiltrating poorly differentiated carcinoma with mixed ductal and lobular features and necrosis adjacent to scar.”

Poorly differentiated the cells are abnormal in behavior and appearance.

Mixed ductal and lobular features is a new thing for me. My original cancer was lobular, and since I had a mastectomy, I’m not sure how I would get ductal features mixed in, but that’s a question for another day. The surgeon didn’t think  it would impact my treatment plan, but she would obviously be sharing all the results with my oncologist.

Necrosis refers to the debris left behind when cells die. In the context of breast cancer, necrosis may be an indicator of a more aggressive breast cancer.

Adjacent to scar… it’s not unusual for a recurrence to start from a rogue cell hiding out in the scar tissue.

The surgeon did take a bit of my pectoral muscle because she thought the tumor seemed adherent to the muscle and she wanted to ensure that I had absolutely clean margins. I would never have known that she did this if she didn’t tell me. I don’t have any noticeable issues with my muscle.

She had taken a number of tissue samples from other places and all of those came back clean. She said nothing was left behind.

The left breast tissue removed had no signs of cancer.

* * * * *

My drains are starting to slow down and I’m hoping to get these appendages removed Wednesday. Fingers crossed!! Otherwise, I’m doing pretty well. I’m sleeping on the couch so I can put myself in a comfortable position that won’t result in me rolling over on my drain sites. My skin is still pretty numb in many spots, but that usually comes back after a period of time. I get tired every now and then, especially if I overdo it (like this weekend). My steri-strips are starting to peel off, so that’s usually a good sign, too!

 

IMDb: Pathology (2008)

Healing

It’s two days out from my recurrence/revision surgery and the healing process has begun. Rest, relaxation, incision and drain care, good food, and the love of family and friends. Thank you to all who have reached out to check in. I am doing pretty well, with good energy and only a bit of discomfort, particularly where those darn drains are.

David and I went to Philadelphia on Monday and enjoyed some historical sightseeing, visiting Independence Hall and The Museum of the American Revolution. Being Martin Luther King Day, as well, so much of what we saw just his me emotionally. We enjoyed some good food and a few drinks and prepared ourselves for Tuesday’s surgery. We learned on Monday that my report time to Penn Medicine SurgiCenter was a very precise 11:53 am. That was later than I hoped, but earlier than I feared.

Worried about traffic, we arrived early. 11:15 am. We checked in and sat in the waiting room. And we waited and waited and waited… It was almost 2 hours before we were called to pre-op. Everyone we encountered was super nice and professional. I was made comfortable, had an IV inserted without pain (a first!), and I met with my surgical team one at a time: the plastic surgeon (who drew on me just like you see on all those TV shows!), the plastics resident, the oncology surgeon, and the anesthesiologist. They were behind schedule, so there was a lot more waiting and I think I finally went to surgery between 3 and 4:00.

What was supposed to be a relatively easy surgery actually ended up being a lot more involved. Why? Because my original surgeon, back in 2012, did a crappy job and left SO much breast tissue behind. One of the surgeons told David that they basically had to do a double mastectomy, and not just a local recurrence and clean up. They indicated that they have never seen anyone leave so much breast tissue. So now I am left wondering how much that influenced my recurrence.

Recurrence rate for breast cancer with mastectomy and radiation is 6%. Recurrence rate with lumpectomy and radiation is as much as 15%. So did leaving all that breast tissue double my risk? Or even more? What was the point of a prophylactic left breast removal (the non-cancer side) if he left half the breast anyway? I am really pissed about this information and look forward to further conversations with my surgeons at check up.

As a result of having so much tissue removed (as opposed to just some extra skin and fat), I now have the dreaded drains. I have to keep those in until the drainage output is less than 30 ml over a 24 hour period. Then I call the plastic surgeon and they’ll fit me in to remove them. So an extra trip to Philly to boot. I will go back to see my oncology surgeon in a few weeks.

Since the surgery started late and went longer than expected, we didn’t get home until Tuesday night about 11 pm. Yesterday was a restful day and, as I said, I do feel pretty good. My drains are itchy and bulky, but otherwise, I’m managing pretty well. It’s day two post-surgery, so it is shower day! I am looking forward to feeling human again after washing off the hospital stink and stickiness! I’m also looking forward to checking out the work that was done. (I thought about posting before and after photos, but I’m really just not that brave!)

Thank you again for all your positive vibes, good energy, prayers, gifts, texts and phone calls! I am feeling the love!

 

IMDb: Healing (2014)