Mixed Feelings

Surgery is just two days away and I want to thank all of you who have called, texted, FB messaged, sent a card or positive vibes, taken me to lunch/coffee, and/or prayed for me these past several weeks. It’s such a great feeling to have such a wonderful tribe of friends and family to get me through the dark times.

As people check in, the most common question I get is some variation of “how are you doing?”  A very fair and caring question. To be honest, it changes by the moment. I try to keep busy and feel like I’m going through some weird form of nesting — cleaning and organizing and purging… anything to keep my mind off the impending surgery.

As you can imagine, surgery comes with anxiety. Any time you are under anesthesia, with someone cutting your body with sharp instruments, it’s never wracking. I worry more about the anesthesia than the scalpels, for some reason. It’s that whole lack of control. One minute you’re chatting with the OR staff and then *poof*. You wake up hours later without a clue as to what happened. It’s just freaky. On the plus side, I’m ready to have this cancer out of my body.

Having cancer is scary. Having cancer for the third time is downright petrifying. So, yeah, there’s a lot of fear going on. The fear isn’t limited to “am I going to die this time?”, but includes worrying about the results of the surgery, as well. Will I have range of motion issues, will I be satisfied with the plastic surgeon’s work, what will they find when they cut me open, how big will the tumor be, what if it’s spread after these few months…? Lots of things to keep me up at night. And it doesn’t help that they ask you to bring your advanced directive with you to the surgery…

On the flip side, I am grateful. So very grateful for my amazing tribe. Grateful I am pretty healthy (what irony!) and should get through through everything just fine. Grateful for the means to be able to go out of network, allowing me to have two surgeries in one. Grateful for all the blessings in my life.

I am feeling confident in my surgical team. I’m positive for the things to come and I’m energized and re-committed to 100% healthy living. (Moderation is a danger concept.) I’m ready for battle and looking forward to good times in 2020.

It’s a mixed bag of emotions, for sure. Fear. Anxiety. Relief. Gratitude. Determined.

Thanks for asking!

 

IMDb: Mixed Feelings (1995)

A Delicate Balance

With estrogen positive tumors, trying to understand how to balance your hormones so your very own body doesn’t kill itself is an every day mindset. My tumors are “highly estrogenic”… I recall reading 96% on my original pathology. As you all know, I do my best to research as much as I can so I can positively influence my health, but it’s tough to keep up with all the latest information.

Recently, when lunching with one of my plant-based besties, Lori J., I learned about a new book by Dr. Neal Barnard titled “Your Body in Balance.” The Amazon description says, in part, “Hidden in everyday foods are the causes of a surprising range of health problems: infertility, menstrual cramps, weight gain, hair loss, breast and prostate cancer, hot flashes, and much more. All of these conditions have one thing in common: they are fueled by hormones that are hiding in foods or are influenced by the foods we eat.” Hormones and food? Tell me more…

The book isn’t coming out until February 4, 2020, but, luckily, Lori also shared with me a link to a two-part interview with Dr. Barnard by Jeanne Schumacher of Simply Plant Based. The links to both videos are below.

Can I just tell you that these videos were eye-opening and mind-blowing to me? Yes, I know the benefits of a plant-based diet. Yes, I know there is a link between fat cells and excess estrogen, etc. But what I didn’t quite understand is how diet helps regulate our hormones. How our body knows how to get rid of excess estrogen, but needs the mechanisms to help it along. This “estrogen dominance” is what contributes to so many of our health issues as women and fiber is one of the keys to getting rid of the excess. If we don’t eat enough fiber (the amount is higher than you think), those hormones just get re-absorbed into the body. And, again, the more fat/extra weight you have, the more estrogen that is stored/created.

What was even more eye-opening for me was the impact of this fiber, and a healthy diet, on pretty much all those things we women struggle with: cramps, PMS, PCOS, endometriosis, breast cancer, menopause… Dr. Barnard doesn’t just talk about “what”, but “why”, which is so important to motivation. If you don’t know why you are doing it, it’s easy to lose focus. Over the past seven years, I did allow things like cheese to creep back into my diet, along with a few extra pounds. I have been extra diligent since my recurrence diagnosis, but shit got real. There is no more “creeping back”. I need to feed my body the right foods to help find that delicate balance between enough and too much. I need to give my body the tools it needs to do what it already knows how to do.

The videos are about 2 hours total, but it can be life-changing for those of you who struggle with any of those issues. I  cannot wait for this book to show up on February 4th! I implore all the women who read this blog to watch these videos, or to order the book.

Many thanks to Lori for the information!!

Part I

Part II

 

IMDb: A Delicate Balance (1973)

Family History

When consulting with my doctors, both locally and in Philadelphia, I asked about getting genetic testing. In 2019, the American Society of Breast Surgeons recommended genetic testing for all newly diagnosed breast cancer patients. As treatments become more and more targeted based on genetics, it’s great information. Plus, it may help researchers to locate other mutations that may be contributing to cancer rates. I was denied genetic testing previously because they didn’t see a genetic link. (News flash: Insurance companies don’t want to pay for anything!)

All of my doctors were on board with proceeding with the testing. It was recommended that Penn handle the testing, since they can look at more things and have better resources to complete this work.

When I was in Philadelphia last month, I was given a packet of information and a questionnaire to complete. I sat down to work on this the other day and spent about an hour doing my best to remember the date of my first and last mammograms, first and last colonoscopy, first and last transvaginal ultrasound (yes, really.), and all sorts of dates that are long gone! The packet had a page for mother’s family history, but seemed to be missing the father’s family history page, so I inquired with Penn. Apparently there was an online version I was supposed to be completing and that a lot of questions were missing from the packet, so I had to start over.

Today I sat down to work on the online version, which said it would take about 30 minutes to complete. Almost 3 hours later, and I was not quite done…!

I did, indeed, have to include my father’s family history… and that included his 10 siblings, and all their children! Thank God my older brother is a genealogy buff and had done a lot of work on Ancestry.com. I used that to fill in names, dates of birth, dates of death, and age/age at death. And then I had to try to figure out if any of them had cancer. My dad was the baby of this clan of 11, and the oldest sibling was born in 1909! Many of the cousins, too, were closer to my parents’ age, so I didn’t even know many of them. I reached out to the cousins I do have relationships with and was able to gather some confirmed information, but it’s been a very time-consuming and sketchy process.

My advice to all of you is to try to gather your family’s health history now. You never know when you’ll need it. When relatives are complaining about ailments, pay attention and take notes! This may be important information some day!

For the record, there is absolutely no history of breast cancer anywhere in my (known) family…

In other news… I finally got my surgery date: January 21st.

 

IMDb: Family History (2019)

Vision

It’s really hard for me to think of the year 2020 without thinking of the word “vision”! While I certainly do not have 20/20 vision in my old age, I’d like to think I do have vision... “the ability to think about or plan the future with imagination or wisdom.” I have always struggled thinking about 5 or 10 years out, but I do always like to start the new year thinking about my goals and aspirations for the year ahead.

What would I like to accomplish, professionally and personally? What have I been putting off? Where have I been wasting time or talents? Who would I like to spend more time with? What do I need to clear out to make room for the new?

Right now, my vision is a bit short-term, needing to get through surgery and recovery in January. I may do “New Year’s Revisited” after all that, to re-focus and set more specific goals. Being in limbo with the dates makes it a little challenging to plan too far ahead, but that doesn’t mean I’m not thinking about it or planning beyond that. Health scares do help with prioritizing what’s important… if this was your last year on Earth, what would you want to accomplish? What would you want to leave behind? (Don’t worry, I’m not planning on going anywhere anytime soon, but we never know, do we?)

I think it’s important to take a look back, as well. What worked, what didn’t? What should you do more of? When did you feel your best? What motivated you? Where did you find your joy, and how do you get more of that going forward?

2019 was pretty awesome for us: Book release, senior year “lasts”, musical achievements, graduation, Italy, Virginia, college, speaking engagements, a grandbaby, photography, concerts galore, time with family and friends… and so much more! Yes, cancer stepped in, as well, but that doesn’t take away from all the wonderful things we got to experience in 2019.

So where do you see yourself in the New Year? What’s your vision?

Happy New Year, everyone! And thanks for your loyal readership! Here’s to good things in 2020!

IMDb: Vision (2009)

The New Plan

While I do not yet have specific dates, I do have my new plan for treatment after two trips to Philadelphia. (Yes, two, in a matter of five days…) I thought it would be easiest to break it up by modality in more detail below but first I wanted to mention how wonderful University of Pennsylvania was: Appointments on time. Doctors who listened attentively and spent significant amounts of time with us. Detailed explanations on each step of the game plan. Patient listeners. In total, we spent 3 1/2 hours with 3 separate doctors – my oncology surgeon, my oncologist, and my plastic surgeon. David and I both felt very comfortable with all of the doctors (despite the fact that they all looked too young to be doctors!), and felt a sense of relief and encouragement when we left.

Here are the details of our plan forward…

Surgery

My surgery will likely be scheduled in mid-to-late January. The surgeon will remove the mass and does not think that the muscle will be impacted, as Invasive Lobular Cancer does not typically attach itself to the muscle. No lymph nodes will be removed since there is no evidence of disease in them. Additionally, because I already have lymphedema, she did not want to risk impairing the use of my arm for merely exploratory reasons.

She agreed that doing revision surgery as part of the excision surgery and submitted the referral to the plastic surgeon while we were meeting with her on Friday morning. By Friday afternoon, I had already heard from the plastic surgeon’s office and was scheduled to meet with him on Christmas Eve (hence, the second trip). The plastic surgeon was understanding of my dissatisfaction with my original surgery and noted lots of extra skin and “dog ears”.  (For your edification, dog ear is a term used to describe a characteristic puckering of the skin that can occur after surgical wound closure. These are a common and generally preventable problem, but for some reason, many women have them after mastectomy. I believe that surgeons can be either lazy, or under the false assumption that most women will return for implants, so who cares?)

The oncology surgeon will simply remove the tumor, and then the plastic surgeon will take over, removing the extra skin and performing liposuction to remove the excess tissue/fat within those pockets of skin. He was very clear about setting expectations. It will NOT be perfect, for the following reasons.

1. He is fixing someone else’s surgery. It’s always easier and better to do it right the first time.
2. It is unclear how much skin the first surgeon will remove, or how deep she may need to go, as part of the tumor removal.
3. The right side has been radiated, and radiated skin does not stretch as well, nor does it heal as well.
4. Because of my existing lymphedema, he will have to be much less aggressive on the right side, so as not to further damage the lymphatic system.

I was grateful for his honesty and, while it won’t be “perfect”, it will look remarkably better.

Surgery will be done on an out-patient basis and should only take 60-90 minutes! I may possibly have drains in for about a week.

 

Chemotherapy

Because my recurrence is the exact same cancer that I had previously, chemotherapy will not be effective. If this had been a new primary cancer, chemo would have been on the table. However, since it’s the same one, these cells have already seen chemo and survived it. The oncologist also expressed that I had received one of the harshest and most toxic combinations of chemo, which is no longer given in the manner I received mine, so if the cells survived that, they surely won’t be impacted by something less than that. I am relieved to not have to do chemo again!

 

Radiation

There is such a thing as a lifetime limit on radiation. Generally speaking, once you have played that card, you cannot play it again. However, at UPenn, they do re-radiate if it’s appropriate. So this will be looked at in terms of how much radiation I received previously. If there is any room between what I received previously and the lifetime limit, I may have some radiation. Perhaps it will be at lower doses or fewer sessions, but they will give me what they can and believe there is some benefit in this. I did not meet with a radiologist at Penn, but they said they often work with my local radiologist and he will make the final determination.

 

Systemic Treatment

This is the part I worry about the most because I struggled with the Femara so much the first time around. As some of you remember, I dealt with insomnia for months on end, had bad night sweats, and was constantly in pain. I could barely move on this drug and felt like I was 100 years old. That said, because my cancer is “highly estrogen positive”, taking anti-estrogen drugs will have benefits in staving off future cancer growth. She explained that, because I was not menopausal at time time I was taking the Femara (or rather newly menopausal), the drop in estrogen was significant and had greater side effects. Now that I have been menopausal for seven years, after being thrust into menopause by chemo, the drop in estrogen will be less and perhaps, the side effects will not be as severe.

She promised not to start me the Femara, though, and we will keep trying until we find one that I can tolerate without loss of quality of life. Options include aromatase inhibitors like Arimidex or Aromasin, Faslodex (a very painful shot in the butt!), Exemestane, or even Tamoxifen (normally given to pre-menopausal women, but better than nothing). Ibrance is a drug approved for metastatic breast cancer (you’ve all seen the commercials) and that’s in our back pocket, if needed. While I am not technically “metastatic”, the local recurrence could be seen as such if we needed to go that route.

This treatment will start after any radiation. The goal is to get me to power through five years of this type of systemic therapy.

 

Other

My case will be reviewed by the UPenn “Tumor Board” in coming weeks. They are a brain trust, of sorts, with all their Breast Cancer team experts (oncologists, surgeons, radiologists, pathologists, etc.) reviewing cases. If anyone comes up with any different thoughts than what is presented above, they will let me know.

I was impressed that they reviewed every little thing that was on my tests. Thinning of uterus lining, so let’s do a non-urgent transvaginal ultrasound in the future. Scattered bone foci (also referred to as bone islands) that they don’t see as concerning. Possible diverticulitis or epiploic appendagitis. Nothing to treat with that, but awareness that it’s there. They were just so very thorough, with all my tests and pathology slides being reviewed by all the respective experts on their team.

I am glad to be going to Penn for my treatment. I feel as comfortable as I can about the game plan, and I’m actually very happy about being able to get the revision surgery done as part of this. I know David felt more comfortable after meeting with everyone and, of course, we were happy to hear the word “curable”.

For now, I’m just waiting for my surgery date and enjoying the holidays!

As always, thank you, all, for your support and encouragement.

 

IMDb: The New Plan (2018)

Make the Best of Every Moment

Having to travel to Philadelphia the Friday for Christmas wasn’t on the list of our busy to-do list, but if we had to go, I was determined to make the best of it! We knew we had a long day of doctors’ appointments on Friday, but we were able to make the trip Thursday night and squeeze a few holiday things in!

Traffic was horrible (Philadelphia. Rush hour. Totally expected!), so we didn’t arrive until about 6:45 pm. There wasn’t a lot of time, but I had intentionally booked a hotel in center city so we could walk to a few sites. The man checking us into the hotel (Philadelphia Marriott Downtown) asked me the purpose of our visit. When I explained that I had doctors’ appointments the following day at University of Pennsylvania, he promptly booked us with a corner room on the 19th floor, with a lovely view of City Hall.


After getting settled, we walked down to City Hall to catch the sites. Unfortunately, the marketplace was closed and the carousel and ferris wheel were not running, but we did get to see this beautiful tree

and also caught the 7:30 pm light show on the facade of City Hall. Pretty cool, if you’ve never seen it. It reminded me a bit of how Disney changes the castle during fireworks. It was worth standing out in the 25 degree temps!

At the conclusion of that show, we headed down to Macy’s to catch their light show and hear the Wanamaker Organ at the Grand Court. (Someone told us it was just a recording, and I don’t know if that’s true or not, but it was still pretty impressive!) I’d love to hear more or catch a tour!

We ended our night with dinner and drinks at the Iron Hill Brewery, after unsuccessfully attempting to get into one of the many vegan restaurants in Philadelphia. We’ll plan better for that part next time!

The beer was pretty good… we definitely recommend!

On Friday, we had a delicious gourmet breakfast in 13 Restaurant at the hotel and we lunched a White Dog Cafe in University City between appointments. Delicious vegan food for me, and non-vegan food for the others. We got to spend some time with cousin, Cassidy, for lunch, and I’d definitely go back. I need to figure out how to prepare tofu like they do! 🙂

My appointments went great, and I’m so happy I ended up at UPenn. I’ll provide more details tomorrow. We need to run back down in the a.m. (yes, on Christmas Eve), for a 9 am appointment with the plastic surgeon!

So, make the best of it, my friends! Every moment! That doesn’t mean it has to be perfect, and “best” means different things based on the situation, but you can certainly find joy in the small things at any moment.

IMDb: Make the Best of Every Moment (2011)

The Philadelphia Story

I just wanted to provide a quick update since my last post. I know I left you hanging without any of the new details, but life has been quite busy with wonderful things like Christmas concerts and parties!

In my last post, I indicated that my December 20th surgery was cancelled and my Penn date would likely change, and that still held true. My new Penn date is, ironically, December 20th. We’ll be heading down to Philly Thursday night, hoping to check out some Christmas sites at City Hall and Macy’s in the limited time we’ll be there. And then Friday I’ll have two appointments at the Perelman Center for Advanced Medicine.

The first appointment will be with the surgical team at 10 a.m. The nurse navigator told me I should expect that appointment to last an hour and a half, which seems like a seriously long time! I’m sure there will be lots to discuss. Items on my list: Can I have revision surgery to fix the lumps and bumps from the last surgery? How deep do they think they need to go (i.e., how much muscle and do any ribs need to be removed?!)? What about lymph nodes? How long will I be in the hospital? Is it still out patient? What will recovery look like if they have to remove a lot of muscle?

The second appointment is at 2 p.m. (she said we should definitely go for lunch in between!) and this is where I expect to consult on my treatment plan. Do I need chemo (I think the answer is no)? What about radiation (this is a “probably”, I think)? Do I need to be concerned about lifetime limits on radiation? What systemic treatment is recommended? I’d like to discuss the problems that I had with Femara in the past, as well as a game plan for managing side effects if they should occur on any new meds. And what does this recurrence do to my long-term prognosis?

I’m not sure how long the second appointment will last, but I’m hoping to be home in time for another Christmas party! 🙂

Stay tuned for more details over the weekend.

 

IMDb: The Philadelphia Story (1940)