Control

Life as we know it has been irretrievably altered these past few months, with no specific end in sight. There is no one unaffected by what is happening in the world today. I pray that we do the right things, stay safe, and come out the other side changed for the better.

As a three-time cancer survivor who recently started new medication, I consider myself a higher risk than most, although not as much as many others. So for me, social distancing is a no-brainer. Other than for two hikes outside, I have not gone anywhere since, well, I’m not really sure. I’ve sort of lost track of time. But it’s safe to say, I’m not going anywhere. My fear of getting this virus is palpable, as is my fear of being denied treatment in a rationing situation.

As someone who is, at times, a bit of a control freak, it’s tough when something this big is out of my control. I’m sure we’re all feeling that anxiety when the big picture is so overwhelming. For me, the best way I can get through this is to focus on those things I can control, with my focus on things that will keep me and my family as healthy as we can be.

I CAN control what and how much I eat. Being home all day every day, in such close proximity to the fridge and the pantry, it would be easy to just say “what the heck?” and eat to my heart’s content. But that’s not the healthiest thing I can do. I still try to make nutritious, plant-based meals every day. It requires some creativity these days (I’ll save that for another post), but we’re doing pretty well. That’s not to say that we don’t have some treats, as well, but the focus is health.

I CAN control my movements. I have been getting on the treadmill every day since our social distancing started. I try to increase duration, speed, and/or incline each day, and I’m at the point where I’m doing a little over 3 miles a day. It’s been good cardio for me, which can only help keep my heart and lungs strong. I’m also getting some exercise through gardening on sunny days and cleaning my house. I’m not really a big fan of the latter, but I find it gives me peace of mind to know I’m doing something to keep germs at bay.

I CAN control what and how things enter my house. We are using online grocery shopping (and grateful for the ability to do so), and David is doing the pick up. What we can leave in the garage stays there for a day or so, and what has to come in the house gets the appropriate cleaning and repacking. Likewise with any other online ordering of supplies and our once a week take out (trying to support our local businesses!).

I CAN control what I focus my mind on. I was all-news-all-the-time in the beginning, but that wasn’t healthy. So now, I try to limit who I listen to, and how much. I’m trying to focus my time and energy on more fruitful activities like reading, crafting, and taking an online class. (Yale’s The Science of Well-Being, if anyone is interested… it’s free!) When I do think about the virus, I try to focus on praying for those who are sick, and for all of those people on the front lines helping us to stay healthy and keep our country moving – the medical community, first responders, grocery store workers, truck drivers, delivery people, restaurants, and so many more. (Yes, David, bankers, too!)

I CAN control ensuring I have social interaction. Technology has made this super easy for us; there’s no reason not to be connected. I try to reach out to 2 or 3 people every day. Phone, text, Facebook Messenger, Zoom, Google Hangout, email, and more. We’ve been able to visit with our grandson (and his parents!), go to church, meet with our church small group,  play games, have a few drinks, and watch Netflix with friends. Staying connected is super important in this time of isolation.

I’d like to say I can control sleep. But that’s pretty hit and miss with me. I do try to go to bed at a reasonable time and I try to allow my body to sleep as needed. However, Aromasin is not always cooperative in that regard. So I CAN control bedtime and when I get out of bed, but what happens in the middle is not always controllable!

I CAN control trying to bring some enjoyment into our lives. We’ve done game nights, even teaching Ethan how to play poker! We’ve watched our share of Disney movies and recently started watching “Tiger King”. I’m bingeing “The Handmaid’s Tale” while walking, although I’m sure those last two items can be debatable as to their entertainment value…! 🙂

So how is everyone else holding up? How are you managing your isolation? What tips are working for you to stay safe and healthy – and sane – during this crazy time?

Be well!

 

IMDb: Control (1987)

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)

Incidentals

Many of us have things happening in our bodies that we’ll never know about:  growths of cysts and nodules, scar tissue, even cancer cells. Those things might someday grow into a health issue, or you might live happily ever after without ever knowing those things existed.

The challenge with being a cancer patient is that ever square inch of your body is likely to be scanned, poked, prodded, and examined. The doctors are looking for signs of metastasis, but they are also finding those odd ball things you would never have looked at unless symptomatic. So what happens when there are “incidental findings”? They need to be followed up.

Back in November, I had my bone scan, head to toe, and CT scans of my neck, chest, abdomen and pelvis. The good news was that there was no sign of metastasis. Unfortunately, there were numerous “incidentals”. These were non-urgent  follow ups, but have resulted in more tests and more fears.

The first was “ground glass nodules” in my lungs. These are “hazy lesions” that may or may not become something more. They could be benign, but may become malignant, so we need to watch. Just more scans in the future to see if anything changes.

Next was thyroid nodules. The presence of these meant I needed to go for an ultrasound of the thyroid which was easy enough. Unfortunately, the ultrasound showed a 2.2 cm nodule that now needs to be biopsied. This I kind of knew was there, because sometimes I can feel it when I swallow. But, yeesh, another biopsy? Everyone seems to think this will be fine, but still, it is one more appointment, one more experience of being stabbed with sharp objects, and one more thing to freak out about.

Lastly, the scariest one to me, was a thickening of my uterine lining “for my age”. Back in November, it was 9mm, but I had to go for a lovely trans-vaginal ultrasound, which showed it was 12mm. Anything over 11mm requires a biopsy. (Are you f***ing kidding me?) I called my gynecologist Friday morning to set that up, and they said, “we can squeeze you in today!” I was not quite mentally prepared for it, but I went anyway, just to get it over with. I’m so done with being poked and prodded, and a biopsy of my uterine lining did not sound remotely pleasant. (I suggested to my gyn that if men had to do this, they would find a better way. He said that if men had to do this, they would all die!) Anyway, I talked to some of my girlfriends who had this procedure and the mix of pain levels varied. I felt like nothing could be worse than those damn sentinel node biopsy injections from 2012, so I was hoping I could handle it.

I will tell you it was not the worse thing ever. I was expecting a needle or the gun-like thing that they use for tumor samples, but it was actually a small plastic tube that gets inserted up through your cervical opening and that uses suction to pull out samples of tissue/fluid. I’m not going to lie… it hurt like hell, like your worse labor contraction, but I’ve had worse. The sharp pain subsided as soon as it was done, and I only had some light cramping afterwards. There was the possibility of spotting, but that did not happen. I will have the results of this test early next week, but my gyn thought everything looked good. Sometimes the thickening changes based on hormone levels, and sometimes it’s just a measurement thing. After all, the difference between November’s CT scan and my ultrasound was only 0.11 inches. Sometimes the fluid gets picked up in the measurement. So more praying that all is ok.

These incidentals have been very stressful and have me emotionally spent. While they may, very likely, end up as nothing burgers, the stress of the additional appointments and procedures and waiting for results has had me crazed and on the verge of tears for a few weeks now. I’ll be glad to get past these tests and results so I can focus on “just cancer”.

 

IMDb: Incidentals (in development)

A.I. Artificial Intelligence

Most people, when they hear the term “AI”, automatically think of artificial intelligence. Unless, of course, you are a breast cancer survivor. Then AI means something completely different. For us, it stands for “aromatase inhibitor”.

What exactly is an AI? Susan G. Komen defines AIs as follows:

“Hormone receptor-positive breast cancers need estrogen and/or progesterone (female hormones produced in the body) to grow. (AIs) lower estrogen levels in the body by blocking aromatase, an enzyme that converts other hormones into estrogen. This slows or stops the growth of the tumor by preventing the cancer cells from getting the hormones they need to grow.”

The three aromatase inhibitors are Anastrozole (Arimidex), Letrozole (Femara), and Exemestane (Aromasin).

For those of you who have been following along here from the get-go, you remember that I took Femara/Letrozole. You also remember how very unpleasant it was for me and how, after about 6 months, I stopped taking this drug. I felt like $h*t and struggled with insomnia for several months straight. I was in pain all the time and the lack of sleep made me feel like a zombie. It was pretty nasty. I sought a second opinion at that time, reviewed a bunch of statistics, and was given permission by all my doctors to stop taking the Femara.

Fast forward to today, literally this morning, when I started a new AI. I am terrified of the side effects, but agreed to give the AIs another whirl given my recurrence. My Penn oncologist has opted for Aromasin, since it is molecularly different from the Femara and Arimidex. Since these last two closely resemble each other, it stands to reason that if I had trouble with one, I would have trouble with the other. It’s hard to believe that I would be terrified of something so tiny and unassuming:

But one glance at the side effects and it’s easy to understand the fear: hot flashes, muscle and joint pain, headache, fatigue, nausea and/or vomiting, osteoporosis (I have to go for a dexascan in a few weeks to baseline), heart problems, changes in mood, depression, insomnia, vaginal dryness/atrophy, and loss or thinning of hair. So your risk of dying is lower, but when I was on this previously, I felt like I was dying already.

On the plus side, my Penn oncologist thinks my side effects may not be so severe this time. She indicated that women who are thrust into menopause by chemotherapy have a harder time, as was my experience back in 2012. There was no opportunity for my body to gradually decline on hormone levels; it was more like “bam!”, you’re in menopause. So the drop in levels from the AI was significant, resulting in more severe side effects. This time it’s 7 years later, so I’ve had the chance to settle into menopause. Theoretically, the drop will not be as significant and the side effects more tolerable. Fingers crossed that is my experience.

If it turns out not to be the case, there are still other options to consider, but I need to give it at least 30 days.

I did recently learn that soy is actually an aromatase inhibitor, which might explain why those who follow standard Asian diets have lower incidence of breast cancer. If things get really bad, perhaps eating soy every day will be an option. Stay tuned.

Day one of my AI is here. Wish me luck!

 

IMDb: A.I. Artificial Intelligence (2001)

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

Toxicity

As I continue to heal from my surgery, I was focused on the next step: radiation. I was so hesitant to do radiation the first time around (see my Silkwood post from 2013!). Radiation is this invisible scary thing to me, and I’ve heard about all sorts of side effects, like fatigue and crispy heart valves. But I agreed to it, with evidence that it was an important tool in lowering my recurrence risk.

Well, here we are, with said recurrence. So much for that! I thought that radiation was a once-and-done thing, because of lifetime limits. I was somewhat surprised that it was being considered for my treatment plan this time around and my fears resurfaced. I worried about the additional toxicity of this second round. What would it do to my internal organs and, specifically, my thyroid (which already has nodules and has to be checked out – non-urgently). I worried about what would happen if I used up my lifetime limits but needed it for something else in the future.

But, again, I was prepared to proceed based on the recommendations of my new team of doctors.

So imagine my surprise, and delight, to find out yesterday that my radiation oncologist is NOT recommending radiation! Woo hoo! He was very pleased with the pathology report and my clean margins. Like me, he didn’t think the benefit outweighed the risk of the additional toxicity to my body AND he agreed it was best saved for future use. We both hope and pray that it is never needed again, but it’s comforting to have options in my back pocket, given my history.

I am relieved and encouraged by this news.

I met with my local oncologist yesterday, as well. She spent a lot of time focusing on what she referred to “academics”, trying to determine if my latest cancer is a local recurrence or a new Stage 1A primary. She feels strongly it is the latter because the tumor was not in the scar, but rather in the residual breast tissue. In the end, the treatment plan doesn’t change either way, but she stated that my prognosis was better if it’s a new primary, rather than the recurrence.

So next steps: the above referenced thyroid check (ultrasound), an ultrasound of my uterus (based on prior CT scans and a thickening of the lining… also non-urgent), and a stop at the dermatologist. My oncologist saw a mole on my chest that she didn’t like the looks of and she wants it removed. I’m not terribly concerned, as I do go for regular full-body skin checks, but getting it checked/removed is prudent.

After all that, I will see my Penn oncologist and the genetics team on March 5th and I’ll start my endocrine therapy at that time. Healing continues to go well… a bit sore and tight, but no complaints.

 

IMDb: Toxicity (2019)

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)