A bone scan (bone scintigraphy) is a nuclear medicine procedure that creates 3-D images of the bone. An x-ray shows what the bones look like, a bone scan shows how they work. A radioactive tracer is injected into the body and is absorbed more by active cells (ones that are being broken down or repaired) and emits gamma rays. The rays are detected by a gamma camera and sent to a computer to create the images. The scan can highlight different areas of bone activity and detect changes in bone metabolism showing fractures, disease, infection, and in my case, if the cancer has metastasized (spread) to the bones.
There’s no eating/drinking restrictions or prep for a bone scan. OOPS, looking back into the prep, I just now realized that you should tell them if you have taken any bismuth (Pepto) or barium as it can interfere with the scan results. I had my CT scan two days before and had to drink the barium chalk shake. I wonder if that matters. Too late now to tell them, so it’s good for you to know at least.
The procedure actually has two parts. The first part is the IV injection of the hulk juice. I was pretty pumped finding out I’d be like a super hero (Go gamma rays!), until the IV. It’s like any other IV, except watch out, it burns. Then they tell you to go have fun and come back about 4 hours later. I tried to make the best use of my time while in town that day so I piggy backed it with my echo and chemo port pre-op appointment. I’d rather go to Costco.
They tell you to drink a liter of water before you come back. The plus is that you get to pee, as they want your bladder to be empty before the scan. So I may or may not have caught that little part, that you were allowed to pee prior to coming back. Let’s just say that would have been especially good to know so you can avoid the potty dance.
You can stay dressed for the scan but need to remove any metal bits. It’s not the best day to wear underwire if you don’t want to take it off. After that, there’s nothing else to do but nap. In fact, it’s encouraged. The room was dark and there was this aquatic scene, like a fish tank background taped up to the halogen light above my head to stare at. I can’t remember if they had offered music but I didn’t have any so I just laid still. It’s a big, non-cozy machine you have to lie in, but it’s not too claustrophobic because you start feet first, and the machine moves so unbelievably slow.
The tech left the room and so I was basically there with my thoughts for the hour. I was trying to think warm, fuzzy thoughts, rather than glow stick radiation popping up all over my body for the camera to collect. Until my alarm went off. A vibrating, loud humming, chair rattling, never stopping pick up the kiddo from the bus alarm. I had arranged for a neighbor to pick her up, but I didn’t remember to turn off the alarm. So for about the last 15 minutes of the scan it went blaring off, and never shut off. It felt like eternity. Needless to say no more napping for me. I called out randomly in the dark for the tech (Hello, hello, anyone???) but they stranded me there. They left the room, like really left, because there was NO ONE to turn off the friggin’ alarm. I totally wanted to get up but I didn’t want to have to do the whole thing again. It was a long 15 minutes of my life. Don’t forget to turn off your alarms!
Chemotherapy can create cardiac chaos, specifically congestive heart failure, where the heart cannot pump or fill the chambers strong enough to effectively circulate blood throughout the body. EKGs and ECGs are done prior to treatment to obtain baseline measurements of the heart. They are done during treatment (I’m getting them every three months) to monitor heart function and to track heart damage to ensure it is safe to continue treatment.
Echocardiogram (ECG)
An echocardiogram is an ultrasound of the heart. High frequency, ultrasonic sound waves are transmitted through a hand held wand (transducer) on the chest. The echo waves bounce back against what they run into, create moving images. The images show the structure and function of the heart including heart size, chamber size, valve function and blood flow.
Electrocardiogram (EKG)
An electrocardiogram traces electrical activity of the heart. Little sticky pad electrodes attached to wires are placed on your arms and chest. The wire are attached to a computer on the other end that reads the the electrical impulses and records them as a graphic image. The images gives information on heart rate, rhythm, muscle thickness, and chemical activity in the body.
What to expect
Painless procedures and no restrictions day of-unless you are hairy, and the sticky pads could pull some hairs. If you are really hairy you’d have to be shaved. You don the gown after undressing waist up. The electrodes are placed and the wires are hooked up to the computer. You lie on your left side for most of the the time. The technician applies gel to the wand and probes different areas of the chest. Bonus points for warm gel. And again with the breathing, they tell you when to breathe and remind you to stay still while they are measuring and recording images. They had to remind me to stay still when I talked. Either that or they just like it quiet. See if you can get your tech to laugh, there is literally nothing else to do while laying there. I did. The procedure takes between a half hour and an hour to complete.
A CT (Computed tomography) or CAT (Computed axial tomography) scan is a diagnostic imaging procedure. The machine uses thin x-ray beams that travel in a circle around the body (or body part) to take an array of images, from multiple directions and angles. The images are then sent to a computer and processed into detailed, cross sectional 2-D or 3-D pictures. Areas of dense tissue and bone appear white, soft tissue and organs appears grey, and air filled areas are black.
CT scans can help determine cancer staging, tumor type (liquid or solid), size, blood supply, and the possibility of removal with surgery. They can also be used to see if there are any additional masses or tumors or cancers and if the cancer has spread. Contrast material taken either intravenously or ingested can be used to help the organs be seen more clearly and is also absorbed by cancerous cells, making them appear white.
You pick up the contrast drink, READI-CAT2, an oral 2% Barium Sulfate suspension, before your scan. It is shelf stable but tastes much better chilled. It can come in flavors including vanilla, chocolate, mocha, berry, and banana (eww, apparently this was the favorite?!? GAG!!!). I tried the mocha. It most definitely not mocha. It was more like drinking a coffee scented liquid chalk paste with an after-burp of imitation chocolate flavored syrup. Maybe try it with crushed ice for a delectable treat? No, seriously, drink it through a big straw and put the straw as far back as possible into your mouth to avoid as much tongue/taste as it goes down.
You aren’t supposed to eat or drink 4-6 hours before the scan, and for a morning appointment, nothing to eat after midnight. I was told to drink the first bottle before bed, and then the next one in the morning, an hour before the appointment. You are allowed to use the bathroom at least. Take advantage of it, because, well, read below.
Watch out for:
Allergic reactions to contrast dye, Iodine, seafood
Medication interactions- ask your provider
Pacemaker, or chemo port?- let them know ahead of time
Claustrophobia- not terrible because you are only going through a donut thingy, not completely enclosed
Interesting tidbit, barium sulfate can make your poop white
At the scan they make you remove your clothes, jewelry, and any metal. This includes fitness watches you never bother to take off, and underwires… just sayin’. You don a gown, but can keep your underwear on if you don’t have any metal on it. No judgement here if you do.
For abdominal/pelvic CT you get additional contrast material through through an IV. The tech injects the contrast dye through a small cannula in your arm and warns you that you may get hot, taste metal, and all of a sudden feel like you wet your pants. You do, and it was a good thing that she told me and that I already went pee, so I knew I didn’t actually pee.
The tech leaves the room so they don’t get zapped with radiation and speaks to you over a speaker. The table moves you though the donut and it makes whizzing/buzzing sounds. The machine/or the tech tells you to hold your breath at certain times. It’s quick and painless and over before you realize it. The hardest part can be laying on your back for an extended period of time if the table is uncomfortable for you. You can go about your day after the scan. Drink lots of water after to help flush the gunk out of your body, and don’t be worried about the white poo.
Chemo Nurse Angel- If there ever was a person who was perfectly placed in her field, she was it. She took me to an infusion chair, had me sit and started explaining. First, she showed me how the chair worked. They recline and have heat settings. (What, no massage? Now that would be wicked awesome!). She told me the prescribed lidocaine cream would need to be put on the port about an hour before every treatment, so that it would numb the skin so you wouldn’t feel the needle when it was inserted. She had some clear tegaderm dressings and told me to put one over the cream so it wouldn’t get all over my clothes. If you can’t afford the patches you can use saran wrap. Once the poke you, you basically spend the rest of the time in the chair.
What it normally looks like leaving the house in the morning.Watching the sunrise
She then went through each drug I would get infused with and how long it would take. She said the first infusion would be the longest, as they start with a 90 min infusion that would drop to 60 mins the next time. She spoke slowly and sweetly, calmly and compassionately. While the anti-cancer drugs would destroy the cancer in my body, my other cells would be damaged too. She explained all the side effects of each drug, and the premeds they would have to give me to combat the sickness caused by the drugs and to prevent my body from rejecting them. She told me that my immune system would weaken, such that if my temp was ever above 100.4 it was a cause for real concern. Like go to the ER concern. Not 104, 100.4! She told me about extreme fatigue I would experience, like never before. That only cancer patients and similar would understand. She told me about cancer brain fog, and peripheral neuropathy, and to bring in ice packs to my very first treatment to wear on my feet and my hands to prevent it.
While she talked, I started to cry. So she gave me tissues and continued on. While she talked, I started to shake. So she held my hand and continued on. She continued on, and on, until she talked me through it all and then, when I could hear no more, she reminded me that I would go through this and so much more so I would survive. She knew.
When I was composed enough to start breathing again, she showed me around the infusion suite. They have a counter with drinks and snacks to get you through your treatment. There was a hat basket constantly refilled from local knitters for the taking, and then there was a wall of wigs. Blonde, brunette, short, long, curly- mannequin heads with hair of all shapes and sizes, for if you couldn’t afford your own. I looked at that wall in horror and almost passed out. I took a step back. There was a scarf basket and she asked me if I would like a scarf, which I politely declined. She offered me bits and pieces and then told me I had to at least accept one thing. Then she handed me a port pillow. I didn’t know what it was for. It was to protect your port from the seatbelt strap when you drive. Who knew? I thanked her and then ran like hell back to my car.
A port pillowMasks don’t cover red eyes
I jumped in my car, backed out of the spot and sped out of the lot. I jumped back on the highway to head back home as fast as I could get there, wheels and head spinning the whole way. The further I got, the worse I felt. I started salivating like crazy and the veins were throbbing in the back of my neck, up the right side of my head. Just keep moving, just keep breathing. I needed to get home. Actually, I really needed to get home. The mobile vet was coming to check out my dogs and give them their vaccinations. My little, ancient, fugly dog (named Goat) had been really ill. I think he suffered a stroke. I took him on a long walk a few weeks ago and he couldn’t move after. He had lost movement on the left side of his body and had to be fed with a syringe. I had tried to take him to a vet earlier but they were booked out, so while we waited for an appointment he miraculously recovered. I need him.
The GOAT
I passed several towns and the Gorilla fireworks stand. My head was spinning, but I was doing great until just outside of Houston, when I could no longer see straight and had to pull over to puke out my guts. It could have been the coffee, or the early morning hours, but I just couldn’t stop. And it didn’t stop. I watched my puke freeze as it hit the snow at 15 below. Doubled over, I was impressed by how the vapor from my breath turned to crystals. Then I realized that I was freezing, without any coat or gloves on, but kept heaving anyway. Exhausted, I pulled myself up and took a huge breath. Icy acid air burned my lungs, and I thought “well that was awesome, yeay me!” Contemplating my existence while looking over my puke pile, I looked around and noticed the sun had risen, and there were fresh moose tracks. At least the moose are back I thought, as I frigidly ran back to my car.
I pulled over one more time but got to my house just behind the vet mobile. I ran up my stairs and shouted to them that they could come in. I ran to the bathroom because I had to puke again. I let the dogs out and then realized the vet had not come in. I walked out to their van and realized they had masked up. I wasn’t sick before this morning and I didn’t think projectile puking was a sign of COVID. They asked if I would rather the dogs come out or if I was exposed to COVID. Don’t worry, it’s not COVID, it’s only cancer I told them, and again invited them.
Drive back home with Denali popping out to say hi
I was nauseated the rest of the day. Couldn’t manage my video counselling session because I kept having to go to the bathroom to puke during the session. Laid down a bit and then had a video consult with the second oncology group.
This oncologist was amazing. He knew my history, read through all the reports and had a game plan ready to present. He explained to me that since I had two different cancers, that he would be dealing with each independently, treating me first for HER2+ cancer, and then going from there. He set up a bunch of tests and scans because he wanted to know why I had cancer so young, and whether or not there was cancer anywhere else in my body. He told me he wanted me not to just recover from cancer fully but to get back to the quality of life I was currently living. He told me I could still teach fitness, still be me, and I knew instantly I wanted him on my team.
Moose, since no one wants to see my puke
I cancelled my fitness classes that evening, still having bouts of nausea and went straight to bed. I spent that afternoon and evening in bed, or in the bathroom hurling, even when there was nothing left to hurl. In-between bouts of dry heaving, I slowly let the feelings sink in. This was real. This was really happening to me. Actually, it already had happened and now I had to do something about it.
When I woke up the next morning I figured that had been the worse nausea I had ever experienced, and that I absolutely HATE being nauseous. Like really hate it, like I would rather have constipation and diarrhea at the same time than be nauseous. I had never been that nauseous in all my life, and I was pretty much morning sick all 9 months of all 3 of my pregnancies, and projectile vomit the whole time whenever on a boat. Cancer nauseous could not possibly be as bad as the night I just went through, so if I lived through that, I could live through this too.
This day was for oncology. I had scheduled two consults, one in person, and the other virtual, so I managed to get them both on the same day. I worked to schedule these appointments as soon as I received my pathology results. Depending on insurance, you need referrals from your primary care, so it can take some time. I did find out however, that when your primary care has to tell you that you have cancer, they do whatever they can to help.
I decided to get back on Zoloft (Sertraline). Zoloft is an SSRI- A selective serotonin uptake inhibitor. Serotonin is a neurotransmitter, a chemical messenger that transmits messages between neurons and the brain. It’s also a happy hormone, the feel-good hormone, that helps stabilize mood and I definitely needed me some happy. As an uptake inhibitor, Zoloft works by maintaining/increasing the levels of serotonin in the brain, instead of letting it get reabsorbed by the neurons. This helps prevent panic attacks, anxiety and depression.
Cancer is stressful. I was starting to have a hard time sleeping with my mind racing all night. I was anxious, irritable, and cranky. My blood pressure was also starting to skyrise. I think it’s called white coat syndrome, but it was through the roof anytime I was at the doctor’s. As I was seeing lots of doctors now, I quickly added this to my list of worries too.
I remembered the last time when my life was a total disaster. I completely spiraled out of control, and lashed out at everybody and anybody in my way. Especially at my family, and they deserved so much better. I tried everything to stop. From praying and meditation, to insanely exercising daily, but nothing seemed to help. I finally caved in, realizing I had nothing left to fight this on my own.
That’s when I started counseling and Zoloft. I used to think that if you prayed enough or was maybe strong enough, you could get through anything. No one, except the weak, needs mental help. This belief is held especially high within some Christian groups or Asian cultures. Furthermore, you simply don’t talk about such things. It’s considered gossip or taboo. The problem is that you just simply aren’t strong enough, or don’t believe enough, and must try harder. You are a failure and show weakness if you can’t manage it on your own, quietly suffering alone.
But the Zoloft, it helped me breathe. It helped me stop. I could pause before I saw all red. Before all the freaking and effing and blinding ensued, sometimes I could freeze and try a better way. Sometimes I could use a coping mechanism instead of steamrolling over the entire universe and then remorsefully attempt to pick up all the shattered pieces in vain. Sometimes I would even manage not to explode. These times I could speak calmly and clearly, or had the peace to simply walk away. I wouldn’t have to be racked with guilt, apologizing to everyone profusely for being out of control.
Changing my environment allowed me to manage without my mental helpers for quite some time. My diagnosis quickly brought them back.
When picking your treatment team it’s important that you trust them completely. It literally is your life, your future, entirely in their hands. I am no specialist, so I needed the ones who sincerely have me and my best interests in mind, on my team, and in my boat. For my team, I needed to be able to ask them every single one of my questions, and not feel stupid when I needed time to process each response. I needed to be a name, a person, and not just a number in their care. If you aren’t sure what to do or think at your consults, focus on seeing how knowledgeable the provider is, not just about the specialty, but regarding your case specifically, and how comfortable you feel talking to them about your care.
I drove to town as soon as I dropped my dd off at the bus stop. I am not a morning person, so it was way too early for me. The first appointment was in the valley, about an hour away. The office was modern and clean. The staff was friendly and efficient and I was seen to a room directly. After my vitals were taken (high bp again) I waited a bit for the oncologist to come in. I looked around the room and saw these MaryKay gift sets on a side table. They were wrapped in clear cello bags with little pink ribbons printed all over. I waited a minute, and then I grabbed a bag to take a closer look. They contained a card, lotion, some lip balm, an eye mask, fuzzy socks, and body cream. It took me another minute to process what those little pink ribbons were for. The symbol, it now stood for someone like me. Or maybe I now identified with it? Oh boy, just breathe.
I Party in Pink. I support breast cancer awareness. I even co-instruct a group fitness event at my gym during Pink Week yearly to help raise awareness and funds for research. The event was actually not too long ago. I baked cookies, made scones, donated prizes, and got dressed and partied in all pink, never realizing I was supporting a cause that now supported me.
I’ve known some women who have gone through treatment for breast cancer. I saw what it did to them, how tired they were, how they survived but were not quite the same, and how their families had to cope. I felt bad for them and tried to offer support. I knew enough to know it sucked for them, and that I couldn’t really do much to make it any better. I didn’t know what to say to them so I told them they were amazing. I was impressed by all they had to persevere through just to get through each and every day. Looking at that bag, I realized how my life was about to change.
The oncologist who came in was brusque to say the least. She looked tired, and hurried, and not happy. Personally, I need more happy in my life. She read through my chart and then presented me with a cookie cutter treatment for my plan of care. She started spewing out terms, and a bunch of drug names that I couldn’t even pronounce and told me that since I was HER2+ I would be going through 5 cycles of chemo and that the nurse would explain it all to me later. She then started telling me about side effects and writing me out scripts.
She wrote a script for lidocaine, to be used an hour before each infusion so it wouldn’t hurt as much when they jabbed the needle into my chest port. She added Doxy something, two different anti-nausea meds , over the counter anti-acids, diarrhea, and constipation meds to the list. The effects of chemo sickness hit me precipitously.
This was also the first time I even wondered about the cost of cancer, and I realized how quickly this would add up. The doctor told me I would get infused weekly and would have to come back twice the second week for an antibody treatment if my insurance covered it. She told me my hair would fall out, my skin would crack, my nails would bruise, and my lips would chap. All of a sudden I saw the true value of each item in that pink ribbon gift set.
She asked when my port surgery was scheduled and booked me in the week after for treatment. Since I had just learned about them yesterday, I asked her about the port. The huge questions that came to mind were how and when I could get back to teaching group fitness with a port in my chest muscle. Have people done it before? Would it heal? Would it bounce? What about repetitive motions? You can easily do anywhere from 800-1,000 punches and jabs in each cardio kickboxing class. Can you do that with a port? She glanced up at me and said “How am I supposed to know. I’m not a surgeon.” Oh.
So I asked her an oncology question. Why is it specifically 5 cycles of chemo, no less and no more. She looked irritated, responding with “That is what the clinical trials say, why would we do any different.” I asked her if it was common for women to have cancer in both boobs, and if that was in the trials, and she said no. Um, Okay.
Then I asked her a question that got her visibly annoyed. I asked her about birth control. I was told to get off my hormone based pills as soon as I was diagnosed, so I asked her about hormone free options. She looked at me like I was stupid. “Well of course you can’t have hormones you have cancer, ever heard of condoms?” And I got really embarrassed. I figured there might be IUDs or something else as an option, but didn’t know if the anti cancer drugs would affect them in any way. She then succinctly told me to take it up with my primary care, and I knew I was done with her.
Personality matters, even having a tiny bit of compassion, when it comes to medical care. Or at least expertise. I didn’t see either here. I really wanted to like the clinic as it was much closer a drive to my home, but this provider did not give me any positive vibes to say the least. Instead, I started hamster heading side effects and got a bit dizzy from holding my breath to try to calm my head.
As we left the room to view the infusion suite. I asked her about the care bags and she said they were there for breast cancer patients, so I snagged one on my way out. She walked me down the hall, to a windowed room full of reclining chairs, she dropped off my chart and scurried away, leaving me with a chemo nurse angel.
My amazing friend came with, and we decided to make a day of it, so treated ourselves to VIP (amazing Korean food 🙂 for lunch. We had found and printed a bunch of questions from breastcancer.org to ask the different specialists who would become my cancer care providers. We wanted to be prepared. We had been listening to podcasts and searched for unknown knowledge that would soon become our common, and read through the questions during lunch. Truth is, I didn’t even look at those questions at the appointment.
Parking at Providence
Cancer during COVID, so they wouldn’t even let my friend into the waiting room. She had to walk the hospital halls instead (what irony!). So in I go alone. I had filled out all the initial paperwork ahead of time (always a good idea as you are stressed out about being there and can’t think straight enough to fill it out day of), so I got to get naked, don a robe and wait.
At first, the surgeon seemed attentive, but dispassionate. I wasn’t quite sure what to think. She didn’t ask about my sob story and she didn’t really give me any time to digress or to explain my unstable mental and emotional states. What’s up with that???
The surgeon didn’t coddle or pity me. She didn’t let me digress into depression. What she did do was stick to the science and thoroughly explained my diagnosis. I was given a highlighter and we went over the pathology report line by line marking everything I needed to know clearly. She then presented an action plan for treatment and pushed it forward into motion.
She focused on the facts, not the feelings. On reflection, I believe she did this because she realized that I couldn’t focus on anything else. She knew what I was experiencing was more than overwhelming. The most successful patient outcomes are from those who focus on staying both mentally and physically healthy and fit. She reminded me who I was (a single mum of an amazing teenage girl who needs me), and what I did (personal trainer and group fitness instructor), and what I was made of (grit and strength). And she told me I could do this, and I knew I had to, because there was no other choice.
Happy Homer Beaches
I was told about this incredible woman/cancer survivor warrior, Kikkan Randall. Check out the awesome public vlog of her cancer journey here:
I find it awesome and inspiring that such an amazing person had gone through this before me. She went from being a gold medal athlete to a giving a platinum performance through cancer treatment, smiling all the way. At first I was astounded. Still am. Kikkan is a rock star. She’s even more than that. I FB messaged her some questions when I found out I actually went to the same high school as her, and she was so kind and caring in her responses back.
I then asked the surgeon my question of how/when I developed the cancer and she explained to me that the tumor cells grow exponentially. When you find a lump it doesn’t mean that the cancer just showed up overnight, it’s more like cell division has reached a point where you can actually feel a mass that’s already been there for quite some time. Cancer growth is rate dependent, and there are many factors that can effect the rate: your age, tumor grade (what it looks like), receptor status, type, etc. So a cancer you can feel actually got started with a single cell that divided over 5 years ago. Where was I 5 years ago???
I heard the dreaded words: “We will start with the chemo.” At this point I had researched treatment plans but had no idea (because I had no specialist providers yet) what was going to take place. Would I have radiation, chemotherapy, or mastectomy. Could I be having the cancer cocktail of all three? Researching online shows you there are lots of different types of treatment and all involve different things. I was hoping to maybe avoid chemo, at this point. Anything but chemo. Everything I have ever found or heard about chemo sucks. I’ve never ran across anyone or any site that says chemotherapy is awesome! I actually found lots of cases of people who managed to avoid chemotherapy, but I didn’t know if this would apply to me. I had this sneaky foreboding that since I was winning it on all fronts of losing recently, I was cocktail lucky. Girl can hope though, right?
When I asked about the possibility of not doing chemo she gave me the “only if you want to die” look. Oh. Radiotherapy? That’s definitely on the table for after surgery. Double Oh. So then I got up enough nerve to ask about mastectomy… no answers. No one wants to give you answers you definitely don’t want to hear. Let’s wait and see.
I did not want to wait and see. I just wanted to know. Knowledge is definitely power, especially when it comes to what plays out for your future; and I don’t know how to not know. How do you not know?
Okay, so what does this mean for now? I told her about my fears for the future. How can I teach going through chemo? Chemo basically kills all your cells as they are dividing in attempt to kill the cancer cells. Over and over again. How would I be able to train anyone or in anything after frying my body to bits? How do I live if my job is physical exercise and chemo makes you too tired to move?
Her look of incomprehension astounded me. She told me, quite matter-of-factly, that there was nothing I couldn’t continue to do as long as I felt up to doing it. She then mentioned Kikkan again and how she was able to bike to treatment and back and train everyday. And while I am totally all about Kikkan, I looked back at the surgeon in disbelief.
I don’t get paid to train! Well, I kind of do, as I get paid to work but no work, no pay! In that moment, reality started to sink in a bit further, and I realized who I am not. I am no survivor. I am not just a label. And I most definitely am not a cancer warrior. I’m no trophy winner, have no sponsorships, no medical team, no fan club. It’s just me, and I definitely don’t want in for this race.
More Happy in Homer
Up goes the blood pressure and so I automatically jump to just wanting to know when this would END. I do so well with goals. Short goals, long goals, any goal. Give me something. Anything? Even before I got started I needed to know when it would just be over–No comment.
Okay so how about timelines? Can you give me a timeline? I wanted to know when/if to send for help to care for my dd and her schooling. I wanted to know when treatment would be starting, when surgery was, and again, when this would end. I got no dates, no times, no answers. I was reminded to take one step at a time. I HATE taking things one step at a time! Breathe.
When I asked her about getting a second opinion there was no hesitation. She gave me the names of some other surgeons was completely confident that they would come up with the same treatment plan as she. I asked her if I should go back to Boston and Dana Farber. She explained while they might be a prestigious cancer center, she reminded me about the beauty of Alaskans. People aren’t here because they have to be. She reminded me that the same resources and caliber of professionals were available here as elsewhere. People with the same level of expertise, but choose to live life differently, same as me.
What she did offer was her experience and expertise. And to schedule my first surgery. First surgery??? I had no idea I needed more than one! She then offered to personally put in my chemo port. What’s a chemo port? She showed me.
A chemo port is a plastic device about the size of a quarter, with a tube that goes into your vein to your heart. It’s put under the skin into your chest so that your blood can be drawn and IV meds distributed more easily. She said it was more efficient than using PICC lines in the arm. And then I freak. “A what in my chest, with a tube to the vein in my heart???” Total tune out, total zone out, no comprehension. No plastic in my chest. Oh, no way. Deep Breath.
She had someone come in to take a picture of my boobs for the files. With my back up against the wall and my upper body all exposed, I started wondering what it felt like to have your picture taken when you are about to be convicted to be on death row.
A myriad of medical checking, prodding, and tumor measuring ensued. She then did something special that showed me her heart. She explained to me why she offered to put in my port. While it’s simple enough a procedure for any surgeon to do, she asked if they would do it in the correct place. Most surgeons would put it in your chest, somewhere under your clavicle, in an easily accessed location where you’d have a visible scar, for the whole world to see. You could be at the grocery store one day just trying to check out and some curious person might randomly ask you about your scar. You might not want to explain. She then showed me where she’d put the port in on my chest. Under my bra line. She showed me where my skin lightened and where it was covered up. She then told me that this journey was my story. Mine to keep or mine to disclose however, whenever, and to whomever I chose. Or not.
So I chose her. I knew then that she was the right surgeon for me. I thanked her for everything and told her how grateful I was that she was available to be my surgeon. She gave me her A team, adding on a wicked smart oncologist for expertise. She told me about how she was looking forward to seeing me this yearly event she held for cancer survivors, and watching how my personal training business would flourish, in spite of it all. I breathed a little sigh of relief knowing that I had her in my boat.
And then she touched my hair. My long, flowing, purple tinted hair, and and said you know it will all grow back, right?
One second feels like one thousand when you are waiting for results. You fill your days with activity to make the time go faster, but do you really want to hear what comes after? The “what if” permeates every breath you take, no matter how hard you try to ignore it. The thoughts keep coming, changing you and how you perceive life, even before you know anything at all. You picture your life with cancer, and what that means to you. How would you handle it? What kind of cancer patient would you be? Would you want to roll over and die? Would you be a poster child for awareness and support?
You wonder what it will mean for your family. How it will affect them. And then you start to wonder how others will treat you. I don’t know why that matters so much- how others treat and look at you pre and post diagnosis- but it does, a lot.
East End Road Homer, AK
Then you start to wonder what’s wrong with you. Why are you blowing it out of proportion? Are you this sad little attention seeking, over-exaggerating person? It’s probably just nothing. Can’t you just be patient and wait?
I wonder how other people deal with the calm before the storm. Do they find peace through prayer and mediate? Do they reflect on their path in life and current life choices? Me, I just get cranky and bite people’s head’s off.
I had my biopsies on Thursday and was told I would hear back by Tuesday. They had to send the samples to Seattle for pathology. I managed to stay busy all day Friday with my regular work. I didn’t know what to do at my lifting class on Friday evening as I was told not to lift my arms over my head. Try teaching a lifting class without lifting the bar, it’s a lot harder than you think. I also didn’t know what to tell my students, and what they would ask.
I tried teaching the class with a non-weighted bar for the above the head portions. I think I told my students I had an injury so was modifying but that they should use regular weight on the bar. I had one student in the back use the demo bar, and at one point I could see them laughing and throwing the bar into the air and catching it on the clean and presses. I was like come on, use weight! They were totally taking the mick as I usually lift heavy.
I started considering why I was so embarrassed to tell people what I was going through. It’s the boobs, I realized! If I told the class I had a knee biopsy they’d be like oh, okay, and move on. But what if I told them about my boobs? Awkward silence? No one wants to talk about their private body parts in public.
By the time we got to the chest track I was done. I was modifying pushups on my knees and the class was still laughing and going easy. So I shouted out “Okay, so I got my boobs biopsied! What’s your reason for modifying today?” And then I got that awkward look. And silence. Not just from the one poor male student who was probably thinking WAY TMI, what am I doing here #%$???, but from everyone else as well. After class, a rather astute student approached me to inform me that all I really had to say to get them to leave me alone was that I had a “medical procedure”. Um Oh. Maybe that would have been best.
So I filled the weekend with busyness, going to dinner, sleepovers for the kiddo, lots of gym/training. I think we even went to the movies one night. By Sunday evening, I was tired from trying to stay busy. Exhausted from trying to be brave or not brave, from reacting or overreacting, from thinking or pretending not to think.
I spent the weekend not telling but wanting to tell my dd what I was going through. We talk about everything, but I didn’t want to talk about this. I didn’t want to scare her or tell her something that would cause her worry, or fear, or change. I kind of wanted to tell her so she wouldn’t give me such a hard time over the weekend, with her lack of sleep/cranky teenager ways, but that wasn’t fair to her either.
So went the weekend. My boobs were, bruised, painful, and sore. I figured I would have healed by now and was tired of hurting from a procedure that was ‘really not a big deal’. They made the recovery sound simple- like you can go about your normal business after 48 hours, but I was still swollen and irritated, and bruised.
So sitting in an auto parts parking lot that night I cried. My bf and I had pulled in to get something for one of my dong chas (crap cars). He pulls over, I start crying. And not just crying, but ugly crying. Poor guy. He didn’t even see it coming. (Except for the fact that I was cranky and biting his head off all day.) I’m sure he didn’t know what to think or never figured going to get coolant would make someone cry. I so I ugly cried and he frantically found some take out napkins to help mop it up.
Looking back on that moment, I can see how things played out. So much is bottled up inside that you are trying to ignore or forget, but it seeps out. All weekend I was cranky and irrational and irritable and all the most inopportune times. And scared. No matter what results you are waiting for you are probably always scared to hear results. I was acting all fine on the outside, but was filled with uncertainty within. Sometimes, when people are going through scary crap that you can’t fix or do anything about, is to just let them ugly cry. Don’t bother telling them to be strong and that everything will be okay, because do you really know that everything will be okay? Maybe the best you can do for someone is to forgive them for their inappropriate outbursts, and hold them as they cry.
Spot the glacier!
Then there was Monday, and Tuesday. Super fun, waiting some more. I trained a lot and made it through those days by mindlessly scrolling through FB when I didn’t want to think about my own life, and I was jumpy all day on Tuesday, waiting for the call. The call that didn’t come.
When the call didn’t come by Wednesday, I finally got up the nerve to call. I figured no news was good news, right? But the longer you wait for results like this, you start to hesitate. First, I tried the Imaging Center, where after a long hold was told that their advocate (special room lady, oh yay!) should have called (she didn’t) or my doctor should be calling me with results. So I left a message for the avocate and waited some more. Then I called my doctor and left a message for them. I waited until the end of business day.
The Doctor’s office rang me right before 5 to say that they got my message and then put me on hold. Another long hold. Then they got back to me and apologized profuseley and said the doctor was still waiting to go over the results and would call me by the end of business that day. I thought it was already the end of the day, but they work late on Wednesdays.
At this point I knew something was wrong. And I was beyond annoyed. I was tired of waiting and tired of being put on hold. Having worked in the medical field before I knew what those long holds mean. And the super sweet polite voice change. That was the big giveaway. It means “Oh crap, this isn’t something I want to/am allowed to deal with so I have to wait for the doctor to call them back. It means that the results were in and they REALLY did not want to be the one to relay them. If it meant nothing, the receptionist would have been more than happy to say that your results look normal and if you need a call back, the doctor will be following up with you in the morning. And that super sweet voice? Know, it always means more.
My doctor called me right at 7pm that evening. The two hours in between took 2 years. Waiting for that call ages you. It’s that call, the bad news call, that you can’t do anything to stop and once it comes you know your life will never be the same. I used to think that call correlated to a tragedy/illness/death of a loved one. I never before considered that it could be for myself.
I was diagnosed with two different breast cancers:
Right breast: A 20x16x22mm irregular mass at 1 o’clock. Estrogen Receptor (ER) positive, Progesterone Receptor (PR) positive, Her2+ negative: invasive ductal carcinoma.
Histological Grade: High
Tubule Formation: Low
Nuclear Grade: High
Miotic Rate: Intermediate
Left breast: A 33x21x36mm irregular mass with angular margins at 4 o’clock. ER positive, PR positive, Her2+ positive: Invasive ductal carcinoma, DCIS (in situ) present.
I scheduled the biopsies for the next week. You tell yourself they are no big deal but you really don’t believe your own lie. I had convinced myself that the lump on the left was just an infection that needed to be cleared. I then convinced myself that the one on the right was merely bruising.
Let’s back it up to January. Long story short, there was an ice dam on my roof and when it got unseasonably warm, drip drops started falling on my head. I was sitting in the living room in my two story cabin and knew my bed was above me so it didn’t make any sense. So I put on my trusty headlamp and went out in the dark (since it’s pretty much always dark in January), only to find that water was pooling under the ice. It was seeping under the metal roofing, down the walls, into the insulation, then back through the ceiling, and on to my head. Yay for me!
So the next day, up I go with my neighbor’s kiddo onto the roof. He is a He-Man who helps me now and again. I had made calls to hire a roof shoveler, but they were booked out, and I was impatient and am super cheap, I mean frugal. So we strapped in to the propane tanks over the top of the house and got to work.
He-Man got a call to go save his dad, so I continued on my own. A few hours later, the whole side of the roof slid with me on top of the ice sheet. I was 20 feet up. There was about 4 feet of soft snow on the ground beneath. I woke up on the ground.
I had clipped into to a waist harness but not a locking one. Instead of catching, the clasp slipped when I fell, so I plummeted straight down. I landed on my right side, chest down, arms bent. Lots of bruising- including my right boob (see I had a point!), but miraculously nothing broken. I seriously believe that regular strength training completely saved me here. Talk about giving you strong bones! It was a miracle that I could walk away from that. It was at least a 16 foot drop.
What a bruise from falling off the roof looks like
So back to the biopsies and my logical explanation of both lumps – an infection from a bee sting and a fatty mass from a fall. Not a problem. Problem is, you still get the niggling.
After my episode in the special room, I scoured the internet for what exactly was going to happen at this procedure. I found stats that literally over a million women have breast biopsies each year and that 80% of breast biopsies are actually benign. I wish I was told that in the special room. It might have eased some of my trepidation with the procedure.
I had ultrasound guided core needle biopsies. Due to COVID, no one could come to support me. They weren’t even allowed in the waiting room, so I went in alone. With the front open gown on, I laid on my back and blocks were used to help arrange my body for the ultrasound. The radiologist cleaned and numbed the areas and then used the ultrasound to navigate through each mass. I followed the path of the needle as it moved through the breast tissue into each mass, watching it leave channels through each breast. The needle then makes a loud clicking pen sound as it takes a sample, or leaves a marker. It happened 6-8 times on each side. The needle didn’t really hurt as it entered the masses, but the samples taken did. They felt a bit like a pinch or sting.
About half way through the procedure I decided I was done. I was done watching, done with the clicking, and I wanted to go home. I looked up at the ceiling with my chest exposed and the tears started to come. I couldn’t make them stop. I wasn’t in any real pain or anything, I just didn’t want to be there doing this anymore.
I silently watered my eyes while they did the other side, and they gave me a tissue and a moment to collect myself. Didn’t work. I was a bit of a basket case and totally embarrassed because the tears wouldn’t stop coming. I kept telling myself it was silly for me to be so emotional about this all, but when lying on your back staring at the dots on the ceiling foam, you really start to think. You think about everything you were pretending not to think about over the last week while you waited for this procedure. You start to think of the pathology results and how long it will take them to come back. You take a breath and allow yourself to ask the dreaded “What If?”. What if? What if I am one of the 20% that doesn’t come back negative? What then? What do I tell my dd? It’s just us. If something happens to me, what are we supposed to do then? And when the thoughts start to come, just try making them stop.
After they stab your boobs, you get to squish ’em. Again. They take you right back to the mammogram you had at square one. They do the mammogram to make sure the magic metal markers are in the right place. Luckily, my mammogram tech was the same one as before, and just as lovely. It was like visiting an old friend now and she even gave me a hug after my biopic ordeal. She understood the fear and panic I was going through, could sense I was losing it, so she shut the door and gave me some space and told me it was okay to cry, and so I did as I hugged her. She truly cared, and was full of compassion. She even snuck me some extra bon-bons for boobies, when no one was looking.
My mammogram tech was amazing. She was kind, caring, and basically everything one would hope a boob tech would be. She understood the fact that at best, a mammogram is an uncomfortable procedure, and an emotional nightmare at its worst.
Even if you go in for a routine mammo, you get the niggling in the back of your mind. The “what if”. With some effort, most women can push it aside until they hear the results. If you go in for a diagnostic mammo though, you already know something is wrong, so then the “what if” inevitably turns into “what will they find”.
Bon-Bons for Boobies!
I knew there was a lump in my left breast. I knew it hurt at times and that it was not decreasing in pain or size. Externally, I had a small bruise that wasn’t going away and could now see a small dimple in the underside of my breast. I assumed the bug bite had somehow gotten infected so finally caved in and went to my primary care hoping for a magic pill/antibiotic that would make make it all go away, so I could go merrily on my way.
I was annoyed when my primary care doctor wouldn’t prescribe anything until she found out what it was. I kind of wanted her to do it the other way. Like if the antibiotic doesn’t work, then I will go get a mammogram.
I live in the boonies, almost an hour from town and I didn’t want to waste more time driving to unnecessary appointments. Subconsciously, I also knew that if they were interested in imaging they were going to want to prod more. This is why I didn’t want to go in. If you don’t want someone smooshing your boobs you definitely don’t want to think about them doing anything more.
I finally got enough guts to schedule my mammogram at the imaging center and just a couple of days prior, my appointment got cancelled. Apparently, if you’ve had one before, they won’t schedule you an appointment until they get the images from your last one. I had a mammogram at 40 (yeay responsible me 🙂 ) stating dense breasts, but with no abnormalities. Problem was that it was in MA and I now live in AK. Apparently they have to hand deliver/walk across the continental US to get me the scans as they have to send the hard copy on disk as it can’t be accessed digitally.
So I waited. Nothing the next week when I called to check in, and they hadn’t even gotten around to calling my previous pcp for the records. I waited the next week and called again, and it was still in process. So I searched online for the MA breast center info and called again with their details.
I waited a couple of more days and then started to think about it and got a bit annoyed. It didn’t make sense. Who tells someone with a lump in their boob (despite what it is) that they have to wait to be seen? What if it was cancerous, and the cancer kept growing all this time you had to wait? I called them back explaining that it was a diagnostic mammo and so even though I didn’t have a baseline image I still needed it done. I asked if they could take just schedule me in to take the images while I am in town (as I only try to go once a week) and wait for the baseline to come in for the comparisons. Still nada.
I went into my pcp the next week for bloodwork and complained to the medical assistant there. He was awesome and I could hear him right away on the phone explaining to them that it was a necessary procedure and they needed the results NOW. Still no. Nope, nada and no. I finally got frustrated enough to call to speak to a manager the next business day. I couldn’t believe that if a person found a lump and was freaking out that they could needlessly have to wait months for previous images until they could even schedule an appointment to see what it was. This time, the receptionist at the imagining center took pity on me and talked the techs into taking the images without the baseline at the end of the week.
Conveniently my scans were there when I went to my appointment. My tech at the appointment was brilliant. She explained everything clearly and walked me through when to stand still and when to hold my breath so the images would be clear. She then had me wait, still gowned, for the radiologist to review the results and determine if more images needed to be taken. She did both sides and then took additional images of both breasts.
She hesitated a bit when the radiologist wanted the additional images. She said that, if available, the breast care coordinator would go over results with patients after the radiologist reviewed the images when this occurred. After I got dressed, she found the coordinator and ushered me into that special room.
No one wants to be sent to the special room. You already know something is up when you have to go there. I already knew I had a lump in my breast so now I figured I was right, and now they were going to have to poke at it.
The Nurse Practitioner was busy in front of her computer when I came in. She glanced up, said hello and told me to have a seat in the chair. She then logged in, pulled up the images, and then turned around. She told me her name and said “Well, I assume you already know why you are here.” I figured she was going to tell me I had a mass in my left breast, which I already knew.
She started talking and said well the mass in your right breast is at 1 o’clock and is about 2-2.5cm. I said “You mean left.”, thinking she had the wrong breast. She glanced up at her computer and said “No, right.” I’m thinking at this point that I sometimes don’t know my left from my right (as I teach group fitness and always have to do stuff backwards) so I hold my left side and said “Left breast, right?”
She looks at me in frustration and is like yes, that is your left breast, your left breast mass is about 3-3.5 cm and is at 4 o’clock. At this point I am confused. I asked her what she meant so she tried explaining a clock face to me.
Her: The breasts are like a clock and the hands describe the location of the masses. So your right breast mass is at 1 o’clock. Me: You mean left breast? She looks at the computer again, gets more frustrated and asks if the radiologist had explained this to already. Me: Nope. What radiologist? I never saw one, only the tech. Her: Well did the tech tell you anything? Me: She said that was your job.
She opens a drawer and pulls out this long cardboard backed sheet thingy with some words and a bunch of metal bits in a long column. Her: These are the markers and they are going to put one in when they biopsy the masses. Me: Masses? At this point I’m touching both boobs, trying to imagine a clock. I look up at her and say, well isn’t there a lump here, isn’t that like 7 o’clock? I can hear her irritation now.
Her: Look at my computer. Here is an outline of of woman, marked with where your masses are on your breasts. This is your right breast, its at 1 o’clock, and this is your left breast, it’s at 4 o’clock. Me again: Masses?
Then I see it. I see it on the screen. There isn’t just one mass, but there are two. I stare at it for a second that feels like an eternity, and absorb the fact that there are two black ovals drawn in. One on each boob.
Me: I have two lumps? Her: Didn’t someone tell you this already? I quit listening. I sit and stare at her dumfounded as she starts talking about the size of the different markers and when the biopsy can be scheduled. I watch as she takes her pen and scrolls down the list to the different sized markers and points at one. I faintly hear her say that this is the marker they will put in my breast when they do the biopsy. Biopsies. I look at her and realize she just told me they were putting metal in my breasts. Me: You’re putting metal in my boobs? Her: Yes. Me: Does that mean I’ll be freakin’ Iron Man? Her: No, they are titanium.
I feel like this is some surreal sick joke and I all I can do or think about is that I just need to leave this room. I have to go. I have a class to teach and I don’t want to be late. I need to get out of this room so I can breathe. My students need me and I definitely don’t need to be here any longer.
When I moved back to AK I could hardly wait to hit the State Fair. It was always one of my yearly highlights as a child. I went with my brothers- not biological (but pretty much are as we are all halfies)- and their families.
Being the hottest summer in ages, the food court was swarming with bees. I was eating my favorite (yeay for funnel cakes!) when I got stung. Or bit. Whatever the difference (yes, I do know that the stinger is in the butt), but both hurt. So I got stung, and it hurt for ages. For pretty much the rest of the day it kept hurting and so I kept whinging until they finally told me to quit being such a girl (told you they are my brothers!) and to stop whining.
A few days later, my dd and I were doing our daily walk to the mailbox. It’s a mile away, so it’s a great way for us to get some steps in and to zap some energy out of our crazy husky pup. We stopped on the way back to visit with a neighbor, and I got stung again. Same arm, almost same spot
My arm swelled up like a turkey leg, and didn’t really go down. I asked my medical community friends and they kept telling me it wasn’t normal and that I should get it checked out for cellulitis. This, of course, I completely ignored (because we all used to work together and are used to ignoring each other) and then about a week later finally gave in.
As I didn’t have a primary care in AK yet, I made the drive to town and went to the clinic. The doctor evaluated me and determined that I didn’t have cellulitis (as there was no pus, or red blaring streaky things). He wrote me a prescription for an epi pen and welcomed me back to AK and with my new allergy to bees.
Fast forward a couple of years to the middle of this August, and our summer holiday in Valdez. Like a boss, I loaded everything for the camping trip the truck the night before. In the morning, dressed in jammies, I diligently popped the hood to check the fluid levels before embarking on our 6 hour journey. When I climbed up the front of the truck I felt a burning pain in my knee. I bent over and promptly felt a searing pain in my boob. I saw these little tiny brownish/blackish bees hovering around me. They weren’t like the bright black/yellow hovering demon wasps that live in the ground and at the state fair. They were much smaller, and the feeling didn’t hurt so much as burn. It didn’t feel at all the same as the wasp sting, so I rubbed it off, hoped I wouldn’t have to use my epi pen (which would then foil our plans and add in a trip to the urgent care), got the kiddos loaded, and we left.
My boob was a bit irritated, but mostly ignored :P. That night as I laid in the camper bed, I managed some time to feel my boobs. Much to my surprise I felt a huge hard lump so started freaking out a bit, and ran things over again in my hamster head. Why was this huge lump in my boob but not my knee. Was it really a bee sting? Could it have been there before?
A few weeks prior I had a women’s health preventative visit. Yeay! Way to go responsible me, establishing primary and specialist care (ahem, after 2 years, blame COVID). Okay, so I didn’t actually do it for me. My dd was coming of age for it, and I wanted to show her a healthy pattern of routine medical care. At the visit the doctor asked when the last time I did a breast self exam was. I mumbled something like “Ummm, well I have dense boobs so they always feel a little lumpy anyway”. She did the once over, did not feel anything suspicious but set me up for a routine mammogram- cuz I’m old.
Back to Valdez, it had been 2 weeks! THERE WAS NOTHING THERE TWO WEEKS AGO! What if it wasn’t from the bug bite? WAIT…what if it was from the birth control? The birth control… I started taking birth control about a month prior. A progesterone and estrogen pill. Could that be it, or could I be crazy? So I fretted all night and then checked it out in the mirror in the morning. I could see a puncture mark in the mirror and some red swelling. Maybe it was a spider bite instead? I called my PA friend to ask if I was crazy. She talked me down and told me to go get the mammogram, which of course I didn’t want to do, so I didn’t go. I figured if it was a bug bite it would heal.
I didn’t want to do a mammogram, well, because it’s kind of like cancer. No one really wants to get cancer, and likewise no one wants to get their boobs smooshed. I also had this premonition that if there is a lump somewhere, a doctor somewhere is going to want to biopsy it, curious creatures that they be, no matter what it was. For a woman, words like mammogram, biopsy, and cancer go hand in hand, and no one really wants to say or ponder any of those words. So I figured if I waited long enough the lump would go away. It didn’t.
I waited about a month and then went to my scheduled primary care visit. My blood pressure was high at this visit (white coat syndrome?) but other than that I told her I felt in good health, until she asked about self exams. So then I had to tell her about my boob. The lump was either the same size or larger. It never shrunk and I felt hot shooting pains through it at times. There was a small bruise underneath my boob. I thought maybe the bite was infected (hey, cellulitis anyone?) but the look on her face told me otherwise. She explained that maybe I had gotten stung or bit but the lump was not in the same location as the puncture site. This time she ordered me a diagnostic mammogram instead.
Bigger than Boobies 