What Now?

(wrapping it up, I guess)

What now? How does one move forward after any life-altering diagnosis, loss, or upheaval? The short answer is: I’m figuring it out, each day. As one does.

When I think about it, I had no idea I had cancer until just over six months ago. And now, I’m basically back to normal, whatever normal is. And also when I think about how to deal with a) my propensity to be a depressive and b) my previous experience with loss and upheaval, I think the answer lies in being patient with myself and others, reaching a hand back for others to hold when they receive similar news, and absolutely grasping for and wallowing in gratitude for the lessons and privilege of living every single day.

How does this look right now?

As I mentioned in the previous post, it begins, middles, and ends with my connection with God. God has been my constant strength, healing, and peace through not only cancer, but through every high and low in my life. And let’s be serious – most of us (me, me, me) are much better at connecting with him when we feel like we really need him, than when times are easy. And that’s okay, because he is infinitely patient, and he knows that I am always in great need of his grace and mercy, regardless of how I think things are going.

I am not patient. But he gives me patience. Patience to process all the feelings, both physical and emotional. Patience to smile at people who say dumb things to me because I say dumb things.

I am not selfless. But he gives me eyes to see, ears to hear, hands and feet to serve, a wallet to share from, and a heart to love. I can be kind and loving not only to other people with cancer – certainly them – but also to others with illness and pain, which is often invisible to what we can see. As I said before, you wouldn’t know I had cancer unless I told you. How many other things are people walking through, not only, but ESPECIALLY during these last two years? Depression at trying to pivot to serve others in their workplace while making sure their kids are receiving an education, in person or remotely? Loss of a income? Loss of family member or friend? Anxiety? Addiction? In fact, I would dare say that most of what we humans endure is under a cloak of invisibility. So one big lesson in my life lately is this: just be kind. I’m not inherently kind, but when I think about how much kindness I seek from God and want from others, I realize my need to BE kind is great. Smile. Give to a cause. Give grace.

I am not inherently grateful, but God shows me so many reasons to say “thank you!” Here are a few: For sparing my life. For giving me words so that I can process my experience and give a kind word for others. For providing me with the experiences of other sojourners along the cancer path, for never taking, and in fact enhancing my sense of humor, just when I need a laugh. For those who have loved me well. For science and caring hospital staff. For healing. For faith. For hope. For love. Amen.

How It Started, How It’s Going, Part 2

Overall, I think you could say that it’s going very, very well. At this moment in time, I don’t currently have cancer. I was able to handily get diagnosed and treated without missing any work. My case is fortunate in so many ways. This is not lost on me.

Now I’m going to interview myself, and ask some Frequently Asked Questions or Questions You Might Wish You Could Ask But Won’t…

Question 1: Why didn’t you lose your hair?

Answer: I didn’t lose my hair (at least that which is not already going due to hormonal fluctuations, but that’s a headache for another day) because my cancer treatment did not include chemotherapy.

Also, disclaimer: I am not a medical doctor, just a woman with one experience. Check with your doctor about any treatment plan.

When breast cancer is non-invasive, or has micro-invasions (right around the tumor), it is localized, and can respond to localized treatment. When it begins to spread around the body, it typically needs more systemic treatment, like chemotherapy. Many breast cancer survivors endure both local and systemic treatment, to kill the beast and make sure the f****r stays away for good.

Question 2: How are you feeling?

Answer: On any given day, it’s different. If you ask me in passing, to be nice and check in, even though we’re busy and at work, I will likely give you one type of answer. “I’m doing really well. Thanks for asking.” However, if we are at lunch or dinner together and you ask, I might say, “Well, my boob’s been hurting a lot this week, and has begun peeling for the second time, but it’s better than it was.” It depends on our closeness and the situation. It’s not that I’m lying in the first answer, I’m probably just weighing the social appropriateness of the situation. But again, that’s me. “How are you feeling?” is also a broad question, too. Physically? Mentally? Emotionally? At the current moment in time? Don’t we all have different answers for these? I do. However, I am ALWAYS grateful to be asked.

Question 3: How is your husband doing?

Answer: Again, this is very individual. I would probably tell you, “he’s doing fine” or “he’s okay”, generally speaking because he is. It’s been very important for me to try to check in with him and see how it’s going because caregivers don’t always readily share their feelings (because they don’t want to burden the person with cancer). My husband and I have the gift of a well-seasoned, 31 year marriage. We have celebrated and endured together, growing closer with each year. In fact our anniversary fell just two days before all of the consultation appointments. We are solid, and grateful for each other. I leaned on him for my cancer, and he leaned on me for the loss of his mom in July. But I’m sure he wouldn’t say no to an all expense paid trip to anywhere without two big life events for at least a year.

Question 4: How do you look? Feel about your body?

Answer: My kids might see this blog, so I’m keeping this private, except for this: I am significantly smaller on one side than the other. I am grateful for my beloved’s patience, love, respect, and cheerleading. I feel like my body is healing and I am ready to focus on being as nice to it as possible and getting as healthy as I can.

Question 5: What’s next for you in terms of treatment?

Answer: I will have a mammogram in January. I am currently on a low dose of tamoxifen for 5 years. I believe I am now going to have breast MRIs and mammograms in offsetting years. E.g. Mammogram this year, MRI next year as part of a high risk monitoring plan of care. I wish I could say, “Anxiety as you go through each test not included.” But you know…it’s hard not to worry.

Question 6: So are you fine, now?

Answer: I am fine today, and have a good chance of being fine tomorrow. But only God knows the number of my days, and he gives me a peace which surpasses understanding (Philippians 4). I am ever grateful for the places to park my brain each day (which I don’t always do because: human) which include the psalmist’s , “Turn my eyes from worthless things” (Psalm 119) and Paul’s (Philippians 4) and Peter’s (1 Peter 5) exhortations to give my anxieties and my thanksgiving to God because he cares for me. Cancer is a beast. I hate it entirely. In fact, because I am hateful and vulgar, I want the t-shirt on Etsy which says, “F— you Cancer, you f—ing f—k!” No, I haven’t purchased it. But man. Thisclose.

But I don’t hate what it has brought to my life.

I am more focused on being in the moment, more focused on making what time I am on this rock worth something. Did I love well? Did I focus on others? Was I even the tiniest bit of the hands, feet, eyes, ears, or heart of Jesus today? I suck at the above all too often, but I’m at least thinking about it and praying about it more. Although I am one who needs to have something to look forward to on the calendar, I am also ever mindful of the fact that I only have today. I can pray for today’s bread and protection and forgiveness, but only God knows about tomorrow. I’m not sure I would have recognized my true inability to control anything but my responses if I had not had cancer. And I also realize that not everyone has my faith, nor wants it. Again, this is my experience. No judgment for others who do not profess to be Christian or have any faith. For me, I have always needed Jesus, but this rotten disease reminded me just how much.

Thank you for reading. I will be wrapping up this series, with a humble heart and lots of gratitude, tomorrow.

How It Started, How It’s Going, Part 1

Have you seen those pictures on social media which are captioned, “How It Started/How It’s Going”? If you haven’t, the gist of it is that people pick some time regarding a certain subject in their lives, say marriage, and show a picture of the beginning and the current status.

How it started: I was completely unaware that I had a time bomb growing in my body. I was living the way many of us were during this pandemic, getting by and doing my best to pivot with the changing responsibilities of my job and the sadness of not only missing gathering with my people, but not being able to hug anyone. That sounds trite, perhaps, but it’s true. I had just been vaccinated for COVID-19, 10 days prior to my yearly mammogram. When I went for my mammogram last winter, it was just prior to receiving information that the COVID-19 vaccine could produce false positives on a mammogram because of enlarged lymph nodes. Welp, it would have been nice to have known that before I went in, but these were early days, and the doctors were just putting that together after a bunch of women had false positives.

***Disclaimer: I am sharing this bit about my vaccine to help other women in scheduling their mammograms at least 2 weeks out (or whatever their clinic suggests) from their vaccination for COVID-19, should they decide to become vaccinated. I am not here for debate regarding vaccination. I know there are really BIG FEELINGS surrounding COVID-19 vaccination. I don’t have the mental or emotional capacity to argue with anyone right now about vaccination. I have friends and family on both sides of this issue, and it’s a complex one. ***

Guess who had a mammogram which needed a recheck? Guess who was hoping it was due to the vaccine?

After receiving the news of a needed re-check, I waited till one month after my 2nd vaccine to be totally sure any inflammation had passed. Spoiler alert: mine wasn’t due to inflammation. To those who might be in this same situation one day, I want to share the next parts. The next mammogram was more lengthy and involved, filled with many different poses and types of compression trays. Ol’ Lefty felt like a model. In fact, for one image, I had to stand, in light compression, for 2 minutes “to let any possible old milk settle” before taking the actual image. Um, ewww. The last milk I was aware of was meted out 23 years ago. Nevertheless, I stood there and waited (awkward). Hey anyone know any jokes?

And, as expected (because I had gone through this once before with a benign result), I was told that they wanted to follow up by taking ultrasound images.

The ultrasound was painless, and shortly thereafter, the radiologist came in and suggested I undergo a core needle biopsy because she saw a grouping of calcifications which looked suspicious. Let me remind the reader that calcifications in and of themselves are benign; however, when they begin to party together, rather than in random locations, they can signify cancer.

Trigger warning for squeamish people. Step away, I’ll wait.

And that brings me to the biopsy. I have had two core needle biopsies. The first was for an area on my “underboob”, and I needed to be lying down to have that one done. It was a major lesson in contortionism because they do the biopsy under compression and mammography. However, we got it done. That one was five years ago, was relatively painless, and again, it was benign. This biopsy was done while I was standing, again in compression.

This one hurt. A lot. Turns out location, location, location is a big deal not only for where we want to live, but also where we want our biopsies to be. Gonna be really frank here, because it may help someone. My spot was at 3:00 right near the nipple. In order to get the best look for the most accurate area to biopsy, the compression needs to be exact and needs to be fairly tight. They numbed me for the actual biopsy, but that particular positioning for the big squeeze, if you will, was painful because: lots of nerve endings! I am not ashamed to say that I wept (while standing very still). The actual biopsy itself–no big deal. I know that anxiety likely heightened my pain experience. I figured that I might not be as lucky this time, so I know even though I tried to be calm and like, “It’s no big deal…” with me standing, facing a machine, three people in the room, one of whom was tugging, and squeezing, one looking on the monitor, and one who was wielding the needle. It was a big deal. It was a necessary step. I’m utterly thankful for this test and the insurance to allow for it. And, it was fairly short – less than 30 min. But it was still a lot to process.

Please: if your doctor prescribes a biopsy, do it. Don’t let any fear of pain or embarrassment or fear that you might find out something you don’t want to hear, etc. I am alive because of diagnostic imaging. Full stop.

And that brings us back around to when I found out about my DCIS. I think I’ll wrap up this series in two more posts – the second part of this one, and some tips I’ve learned in my experience and wish to share. Thank you for reading. I needed to get this story down for myself, and I may bind it one day, so I have a journal of it to keep. But one way or another, I knew the words were pouring out. I dearly hope it helps even one person. That is my prayer.

Support Can Be Beautiful

(and it sure has been for me)

When someone we love encounters any speed bump in life, the impulse to solve their problem or take their pain can feel crippling at times because it’s not possible, even though we wish it were so. On this side of heaven, we will suffer, full stop.

I am a woman rich in friends and family who have been incredibly supportive during this odd time of life. Chief among my cheering squad and support team has been my rock, my Beloved. He has unwaveringly stood by my side, asked questions I wouldn’t think to ask, encouraged me when I was sad, assured me that I was still beautiful regardless of the number of boobs with which I was left by the end of this, and whether or not they were the same size. He held space for me to be sad, sat with me when we were both nervous, and just allowed me to feel the feelings as I felt them for however long I needed to feel them. He took on as much as he could take on, and was a soft spot for me to land when I had to take on the rest alone. And of course, because I love Jesus, I know I was never alone, but I’m talking about the physical experiences and medical needs.

My friends and family will never know what their kindnesses meant to me. There are so many people who reached out, and in doing so, they made me remember that I wasn’t alone. They were God’s hands and feet to me during this process.

As I want to help others who come behind me, I’m sharing what was helpful to me, since I was so well supported, and what I would recommend as both a patient and remind myself to do as a friend (based on my experience with cancer).

  • Texts are great. Why? Sometimes patients have to share so much over the phone or have so many appointments that having a sweet text come in is just comforting. It’s always nice to know you’re on someone’s mind. I was often too mentally exhausted to want to speak to anyone. Especially right after diagnosis. I tend to turtle-in and retreat until I feel safe again. I suspect I’m not alone in this.
  • Cards and letters are great. They encourage and can be re-read in low moments.
  • It’s tempting to rush in and give help right away, and I was lucky in that I had tons of support right away. But cancer is also a marathon, not a sprint, and sometimes we won’t need help right away, but could really use a meal or a visit or a note a month down the road. For example, I was diagnosed in May, but most of August and September was in significant pain and fatigue from radiation. Was super grateful for a dinner brought by then, and for those who continued to check in.
  • It can be awkward (for both sides) not knowing what to say. Here are some ideas of what worked for me and allowed me to share or not share as I felt able: “How are your spirits today?”; “How is your pain level?” ;”Do you want to go for a short walk?” ; “I’ve been thinking of you and want to know if there is anything specific I can pray for.”
  • As a patient, it’s also hard to say the following, because you don’t want to hurt someone’s feelings or be a drag on the friendship, but here are things I wanted to say sometimes: “I want to see you, but I am so slap worn out that I’d rather be in bed.” ; “I have nothing to give you right now, but please still check on me, because I’m feeling fragile and need to know you care.”
  • Ideas for how to help/love/serve?
    • Gift cards for Door Dash or Uber Eats are fabulous because they can be used by anyone in the house.
    • Gift cards or sweat equity for yard work or housework or home caring- e.g. if it’s fall and you’re decorating your porch, grab a pumpkin for someone who isn’t feeling well. Or, if it’s Christmas time and you can afford it, grab an extra wreath for their door.
    • If you have a tangible gift or service, just bring it or do it – do this rather than asking if they need anything. I almost always said I didn’t need anything because I didn’t NEED anything–or couldn’t think of a need offhand. But often those things we don’t need are still nice. “I’m bringing you dinner tomorrow. Do you have any allergies? Oh, tomorrow doesn’t work? Cool. I’ll freeze it and bring it by and you can eat it whenever.”; “I am taking your kids to the park and to ice cream tomorrow at 2 if that works for you.”; “These were my favorite reads over the summer, here. NO rush getting them back to me.” ; “I’m going to Costco. Do you need coffee, dog food, etc.”; “I’m dropping off margaritas in 20 minutes.” ; “I’m going to have a pedicure this Wednesday evening. Can I make an appt for you to come too?”
  • By far, though, the biggest blessing was simply receiving any acknowledgement done in love. Truly. My feelings were very hurt when some people didn’t acknowledge what I was going through. But this was ever so eclipsed by those who did. Any gesture is better than nothing at all. I promise.
  • Lastly, it was drilled into me to write thank you notes to people. “If you can accept the gift, you can write a thank you.” In theory, this is true. With the exhaustion of cancer, I often fell short in this department and felt so badly about it. Please know that your friend is very much grateful for anything you give. When they are feeling better, I know they will love you back in kind.

Topless and Toasted

(radiation therapy)

The first day of radiation, I walked in, got my temperature checked, and gave an attestation to the nurse at the door that, other than cancer, I was the picture of health. I entered the dressing room, changed, and sat in the waiting room with the other radiation customers. It’s in this instant that I felt the ugly fullness of cancer’s grasp and I was emotional on behalf of the people in that room who had cancer. Over my weeks of treatment, I sat among some who were going through painful chemo or immunotherapy treatments, as well as radiation. Their visible weariness pained me on their behalf. I felt lucky, guilty, even for my relative ease. Perspective. I chatted with a dear woman who had lung cancer, despite never having smoked (more common than you might think). We just talked about her grandchildren as she sat with her eyes closed and a smile on her face. I sat near a guy who was on his 22nd of 40 treatments, but he was grateful they didn’t hurt. I sat among other breast cancer patients. The Cancer Club is a club no one wishes to join, but as I sat among the fellow sojourners, I felt the powerful presence of the grace of God. Everyone there had families, stories, wishes, hopes, dreams. And cancer. Each, in their own way, was living with cancer – managing the speed bump or road block handed to them one treatment at a time with courage and grace.

As I entered the radiation suite (it sounds grander than it was), I lay in the same position as in my sim appointment, arms up, head turned, keeping company with 3 of the kindest people on the planet. They would ALWAYS ask me how I was, whether I needed a blanket (always no thank you!), and verbally walked me through every part of the process. Then they would yell out a bunch of coordinates and roll my body into just the right position (millimeters of adjustment), and leave for the safety of the radiation booth. I had to hold my breath during each 15-30 second blast shot zap whatever it is when they shoot cancer causing beams into your body which are used to kill cancer. Why? Because my tumor was on the left side, and friends, under your left breast and left chest wall and left lung is your heart. They had me hold my breath to protect my heart. The techs even put a fancy device right near my diaphragm to measure how I was breathing, and I was instructed to either inhale or exhale just a bit until I was holding in just the right amount of air.

And that was it. The machine whirred, I held my breath, and in less than 10 minutes, it was over. Repeat x5. Each week.

Oh, and at that time, it was impressed upon me that I needed to begin to protect my skin from the effects of radiation. Time to lube the boob. Apparently skin breakdown occurs (if it’s going to) after about 2 weeks in, but you’re supposed to start your skin protection before then. So, I bought the recommended vitamin E oil, and some other creams, and moisturized the whole left side of my chest 3x a day from day one.

Also, as a member of the bustier side of people with breasts, I had to get used to a non-underwire existence. This was actually suckier than you might think, because either you go the sports bra route which squishes them into unibreastdom, or find soft “normal” unwired bras which give the support of a limp noodle. Both of these options look so fetching under one’s clothes. BUT the key is they didn’t want any wires causing skin breakdown on already impacted skin. My poor husband said nothing as all the packages from Walmart, Nordstrom Rack, and Zulily came in for me to find bra Nirvana. Related: there is no bra Nirvana.

Reader, I’m so happy to be back to more supportive bras these days.

It’s the little things. And speaking of the little things, that’s where I’ll pick up again next.

Radiation

(oh, the ear worms)

When I began radiation, two songs kept playing in my mind, because I am, apparently, weird. I heard Queen’s Radio Ga Ga (the chorus only, because that’s what makes it an ear worm) repeatedly in my head. And for younger folks, I also heard the chorus of Imagine Dragons’ “Radioactive” rolling around in my head.

Why, Lord?

I had healed for about three weeks when our most of our little family, including the dogs, drove down to the Oregon Coast for a much needed vacation. It wasn’t so much a scheduled vacation with lots of things to do as it was an exhale–time to relax and enjoy the beauty, take walks, and simply be. Up to that point, our whole late spring and summer were busy with cancer: diagnosis, appointments, and surgery. The following Monday, I was scheduled to have my radiation follow up appointment, when the Radiology Oncologist would give me my plan, based on my path report. Gratefully, my pathology showed that they got the cancer they were chasing and I had clear margins surrounding it (no microinvasions). However, the Friday prior to that on the last day of our trip, we received a call that my mother in law was gravely ill, and my husband needed to leave to be with her right away. I wanted to go, too, but he was adamant that I wouldn’t miss my meeting with the doctor. So, I stayed, with plans to fly out as soon as my appointment was finished. I’m so glad he got to go when he did, because my mother in law passed away right before my appointment. I hated being away from him and the rest of the family during this time, but wanted to honor his wishes that I get my treatment started as soon as possible. I had wanted to be finished with radiation before my school year started, if possible, so I wouldn’t have to juggle. Here’s where I believe God intervened, holding those treatments in perfect timing. Had I already been in the midst of treatments, it would not have been good for me to skip them for travel (or probably even to travel at all). But since I hadn’t yet begun, I was free to participate in the very important (to me) funeral planning and subsequent service for my mother in law.

I began radiation the Monday after we returned from the funeral.

I was prescribed twenty visits of radiation (or XRT as the cool kids abbreviate it), with the first 15 being broad blasts to the entire breast area, and the last five being a “boost” (it made me nervous to hear the words “boost” and “radiation” in the same sentence) to the tumor site, itself.

The first part of radiation treatment is the “sim” visit. The sim visit is the set up for all of the subsequent appointments. For me, that meant lying down on a table, with my shirt off, and my arms over my head, in arm holders, head turned slightly to the right. Everyone was super nice, but I must share that lying like that felt very vulnerable.

It’s in this position that I received my radiation tattoos. These were landmarks, if you will, to help the radiology techs line up the blast zone radiation treatment area. I received pinpoint tattoos on the lateral sides of my chest, under my arms, and one right between the girls, on my sternum. These didn’t hurt, and one is barely noticeable. The one on my sternum is pretty noticeable, but that’s okay. It’s a reminder that I had cancer, and now I don’t.

The sim appointment took under an hour, and then my daily appointments were set up. Monday through Friday, about 15 minutes each day, except on Thursdays when I would have a doctor visit right after radiation. Reader: that’s when they would check to see how “well done” my boob was baked. After that, I visited the nurse who told me which lotions to purchase to protect the skin in that area. She noted that everyone reacted differently. Some people had no skin breakdown at all, and others basically got a sunburn to the area. Guess which one I was?

And that’s where we’ll end it for today. Up next: the actual treatments.

In Which I Get Antennae

Part 5 – Surgery

Well, sort of.

In order to prepare for surgery, I had to have a bracketing procedure, to guide the surgeons specifically to the tumor area. Because, remember, it was small, and probably didn’t look much different to the eye than all the other tissue in its environs. But they needed to be able to not only get the tumor, but take margins around it, as well, to check for invasive cancer.

Trigger warning for squeamish ones: I had to have this done under compression, kind of like how my biopsy was done. *”Dig if you will the picture…” of me standing in front of a 3D mammography machine, squeezed in ouchly snuggly, not moving, and receiving not one, but two long-ass needles around the target area, acting just like little orange batons guiding in an airplane…”can you my darling, can you picture this?”

Cool. Except for the 4 hours before surgery, know what I had hanging out of ol’ Lefty? Feelers. Antennae. Thankfully the surgeon would remove these while I was in surgery, so I didn’t have to become a pupa.

I have to give it to the medical assistant who was with me that day in the mammography suite. She rigged up a little frame out of the bottom of a styrofoam cup and added a whole.bunch.of.tape. to make sure those suckers didn’t move. Because the only thing worse than boob antennae is boob antennae which get bumped or jostled out of place.

And because it’s not enough fun to experience both pre-op and surgery at the same location, My antennae and I had to be transported from the mammography suite via cabulance to the actual hospital where I’d have my lumpectomy.

About 30 minutes after I got to the final destination, my beloved came, with an abundance of PPE. Poor guy steamed up his shield a few times. I’m so glad he was with me.

After 5 people came in and asked for my name and birthdate, and what medications did I take, and if I knew what they were doing and did I have any questions, the anesthesiologist came in. These just may be my favorite people. I mean, sleep, am I right? I told them I tended to be pukey with anesthesia, and they gave me every anti-nausea drug known to man. Good people, those anesthesiologists.

Next thing I knew, I was in recovery, and taking sips of water.

No. More. Antennae. Thank you, Jesus.

I was discharged less than an hour later.

No big dressing, no drama, just a big blue stripe of glue 1/2 way around my *”gloriola”. Also, a few tiny ice packs, a few oxy, and tylenol.

How lucky was I? I mean it.

Here’s where I really do give thanks for this simple (not necessarily easy) procedure. I was in and out in 6 hours. Had I undergone a mastectomy, the stay might have been at least overnight, and I would have been sent home with drains. But for me? Ace bandage around the sports bra and dreamland for an evening and part of the next day. I even showered the next day.

I was to have about three weeks to recover, and then I would begin radiation treatments, which is where we’ll pick up again. #summerofhealing.

*(apologies to Prince and Seinfeld)

Genes, Genes, the Magical Fruit

(So this is cancer, part 4)

Turns out I had one more person on my team – the genetic oncology nurse practitioner. She was lovely and so patient with us. Basically, she took all my family history, and turned it into a family tree of the probabilities for disease and death. She also explained the fact that when I chose to get a genetic panel, I wasn’t just looking for BrCA1 or BrCA2, we were looking for other genes which could be culprits in both breast and other cancers. Aside: BrCA = Br stands for breast, and CA stands for cancer. Not only was this testing important for me, if I carried any of these genes, I had passed them on to my kids.

If I was positive for any of the let’s just call them “shitty” genes, then my plan would change from lumpectomy with radiation and Tamoxifen to double mastectomy. Why? Because the likelihood of recurrence would be significant. Now, a double mastectomy was not something I looked forward to, but some of my friends had done well with them, so I figured I would, too. I was learning and still am learning to keep my heart and hands open. I control next to nothing except my responses in life.

Thankfully, all genetics were negative for cancer causing genes.

As thankful as I was about this – and I was – I was also filled with a bit of guilt and shame that I hadn’t treated my body better, and that probably meant that I caused my cancer. I mean, if it wasn’t genetic, then???????? Environmental, anyone? I’m sharing this thinking because I am sure I’m not the only person who has gone there, and it’s a hard place to be. Here I was given this incredible body, and because I love Taco Bell, and have a hard time saying no to comfort eating at all times, but especially during COVID-19, I gave myself cancer.

No. It’s not healthy to think that way. I knew at a brain level that this was flawed thinking, but my heart was still so sad. Thankfully my husband and a few friends with whom I shared these shameful, embarrassing feelings told me that if cancer were caused by being heavier than usual, no thin people would get it; conversely only fat people would get it. And we know that’s not true. And furthermore, no one deserves cancer -fat, thin, young, old, NO ONE. Again, I’m sharing this because I’m a 52 year old woman who couldn’t just be happy that she didn’t have the genetics for cancer – I had to pull my poor body image and sense of failure at being whatever weight and size culture says I should be into my thinking.

Speaking of thinking, I DO actually give thanks for this ride I’m on, because it has given me time to think. I’m often thinking about how each day truly is a gift, and how I spend my days matters. Cancer is a great perspective shifter and clarifier. It also helps me think about whom I would like to be and what my dreams and priorities are. And yes, one priority is to treat my body better – all of my body – including my mind. So, that’s a project in progress.

After receiving the genetics news, we went ahead and scheduled my surgery for 29 June.

There was a little hiccup called the Seattle Heat Dome (100+ degree temps for days in a region where fewer than 50% of people have a/c) around the time my surgery was scheduled, so it was canceled, not 24 hours before it was due. The emergency room experienced a huge influx of visits from people suffering from heat related illness. Reader, I am not proud, but I did not handle this news well. For about two hours, I vacillated between having a tantrum and being distraught because my surgery was canceled and I wasn’t given a new date. Again, brain vs. heart. I knew that the heat dome sent many to the hospital with heat related illness, and that they absolutely deserved to be seen. I also knew that anyone with an emergent situation should go ahead of me. And yet, it takes so much mental energy to prepare for any kind of surgery that it was tough news to swallow. In the next day or two, I received a new date, 6 July, 2021. And that was fine. It ruined a planned visit we had with our family from CO for July 4th celebrating, but meh, COVID times had gotten us pretty used to disappointments, so…we were just grateful I had a new date.

Tomorrow, I’ll talk about surgery, and surgery prep. So much fun. And yet. I’m oddly glad they’re behind me.

Oncology, oncology, oncology!

Meeting the team…

No sooner than had I begun to wrap my mind around the words cancer and oncology, I was sent to three types of oncologists: radiation oncologist, medical oncologist, and surgical oncologist. This was my team.

I needed a team now.

On 4 June, the COVID-19 regulations had relaxed such that no one gave me side-eye when Beloved accompanied me to each consultation. I had a 1/2 day of appointments, with approximately an hour with each practitioner. And each practitioner wanted to examine my breasts. Why? Did they not read the report? Surely, there was no need to look and palpate. Nope. Apparently, they all needed to see what they were working with.

Reader, my doctors were all men. Aside: I have always chosen women doctors-even when I had my babies. So, guess who had to get over herself quite quickly when she realized every last one of them would want a gander?

Now, I KNOW that we are all comfortable with different things. Many people would be absolutely fine with having male doctors. And, I really was, too, as long as they didn’t have to, you know, look at my boobs! Listen, I know that they are professionals. I know that to them, parts is parts. But these are my parts. And having these perfectly professional MEN doctors was one of those experiences which reminded me that we lose a little bit of agency when we’re sick or injured. We go where we need to go, and do what we need to do.

I ended up really liking my team. They were all kind, gentle, and answered all of my many questions as if I were the first they’d ever heard ask them.

I was surprised and a bit embarrassed that I started crying when I was with the radiology oncologist. He told me I would have a great outcome, but that I would likely need radiation. I guess I thought we were still at the “here are your options” phase, when really we were at the (his words, “Spoiler alert: you’re going to need radiation.”). I think I was just still mystified that a teeny tiny tumor could up-end my life so much. It hadn’t spread. It was “best case scenario” (other than not having cancer), and yet, here I was talking to someone about radiation.

My meeting with the medical oncologist reviewed the fact that my tumor was positive for estrogen and progesterone. What this means is that this type of tumor feeds from those hormones, and the key for preventing further growth or recurrence is taking a medication to block those hormone receptors. Tamoxifen. Tamoxifen has been shown to decrease a person’s likelihood of recurrence significantly – up to half. And yet, side effects can be as “mild” as mood swings, hot flashes, and night sweats, and as dire as blood clots and uterine cancer. Well, that took a turn quickly. The plan was for me to begin Tamoxifen after my radiation, which was to be scheduled three-four weeks after my surgery.

Speaking of which, the surgeon’s appointment was pretty simple. According to this doctor, a lumpectomy was going to be sufficient–with equal outcome to having a single mastectomy, and my insurance might not even cover a mastectomy – because it wasn’t medically indicated. So, lumpectomy it was. When I asked how much tissue he would need to remove (again, for this teeny tiny tumor), he said, oh, just about two ping pong balls’ worth.

Okay, then. Two ping-pong balls’ worth.

So that was the plan…unless the genetic testing revealed that I had the genes for breast cancer. Then I would plan for a double mastectomy. (pivot!) For about three weeks, while I waited for my test results, I vacillated between wanting one option or the other (not that it was in my hands) until I heard back from the genetic oncology nurse practitioner.

And that’s where we’ll pick up for next time.

Part 2 – So This is Cancer

Diagnosis and Sharing

After telling the kids, there was “the big appointment” where I was supposed to find out my results.

Aside: The security folks at the hospital nearly did not let my husband of 31 years come in with me to my appointment. You know the one – where you’re supposed to bring someone because in your shock, you won’t remember all the details? If I had been having a baby, he would have been welcome; but because I was only hearing life changing news, he wasn’t allowed to join me. Just another service COVID-19 provides. Reader, I fought this. Sometimes being your own advocate means questioning a dumb rule, and asking if your husband, who is fully vaccinated and willing to wear a hazmat suit can join you. “I’m finding out about my cancer today. Can he please come in?” They finally relented and let him join me. I’m so glad, because you know what? Caregivers matter, too. He was facing this just as much as I was. Another aside: The healthcare staff in my appointment was all very kind and welcoming. They don’t like the COVID-19 precautions any more than I do. And they are exhausted. I give them all so much credit for showing up to work.

The nurse practitioner was an older millennial, so she knew that I had access to my results. So she quite appropriately greeted me, and then said, “What do you know?”

I said, “Well, can I just blurt out everything I think I know, and have you tell me whether I’m right?”

“Absolutely.”

So I did. And it turns out, I was pretty on target. I had a very small tumor, which had been caught early. It was housed in the milk duct, with no spread, and it could only have been found on my mammogram. Basically, it was a detected due to a group of calcifications growing in a cluster. Calcifications on their own are benign. When they grow in certain patterns, they signify possible malignancy. To be clear: I never would have found this as a lump, as it was the size of a small pea in the midst of a fatty, lumpy breast. So, my cancer stage was zero. Typically cancer is staged 1-4. So having a zero stage cancer was good news. That meant that there was a small tumor with no spread. Soapbox moment: Some people have the audacity to call this pre-cancer or not cancer at all because the nature of cancer is that it spreads. I call bullshit on that. If even one cell would have burst through my milk duct, I would have had stage 1 cancer, or “real” cancer. Let me tell you, my treatment program was for cancer. Moving on…the stage was 0, the grade was 3. That means I was correct; it was a quick grower (grades are given 1-3). And, my tumor was highly positive for estrogen and progesterone. So, my low dose birth control pills, used for a little relief from hot flashes and night sweats did not CAUSE the cancer–but they fed the cancer. Bummer. Had to stop those.

By the end of that appointment, I had several more on my calendar: consults with the radiology oncologist, surgical oncologist, and medical oncologist. And shortly thereafter, with the genetic counselor for oncology. I was so grateful to have a team which would work together to treat this, but I also grew a new label and became a new statistic in a pink sisterhood. Breast cancer patient. Oncology would be a new vocabulary word which I would see often, as well as cancer. I went to a cancer partnership for treatment. I saw oncologists. Shit was real. Cancer, cancer, cancer. For someone who had “the best case scenario”, my life sure was about to change a lot. Lumpectomy, mastectomy, hormone positive, Tamoxifen, perimenopause, post-menopause, side effects, and radiation were also new vocabulary words.

After my big appointment, it was time to make phone calls. I am pretty transparent on social media, but I didn’t want my closest friends and family members to find out that way. I did post on social media after a point, because I was so tired of making calls and telling the same story. In many cases, I felt like I had to be brave and comforting when I told people. It’s hard for folks to hear bad new about people they love. I get this. But it’s exhausting to the person sharing the news. At least it was for me.

Tomorrow, I’ll share about my appointments. Woohoo!