Kalhwa7alap! Hello all! Hope everyone has had a great holiday- at least better than mine. As you can tell by the title, my holidays were all but ruined. Before I can tell you the reason, I need to provide a little background info.
First off, I’m not a wuss. I had a stroke at a young age, two emergency surgeries, and a cranial nerve lesion (vestibular neuritis). None of that compared to this kind of fear. This event was something that would potentially affect all my loved ones, not just me. So I was absolutely terrified. It was a brutal enough experience that it has taken me over a month to write this post, as I’ve had to do it in small “doses” at a time.
I’m St’at’imc and Unangax, I was adopted, and my bio mother was also adopted. I’ve always known I was Native, but never got a chance to meet my mother, as she died tragically at a young age. Her adoptive family is very kind, and they loved her very much. They, along with my own adoptive family, have been there for me throughout the process of finding where and who my mother and I came from. With their help and support, I found my family just over a year ago, and it’s been an incredibly emotional and enlightening experience.
One of the things I discovered was that both sides of my Native family, St’at’imc and Unangax, are prone to cancer. When I met my grandmother, I found out that not only did she survive breast cancer, but her mother, my great grandmother had breast cancer, too. Additionally, her children, siblings, and many other relatives have suffered, or are currently suffering, from various types of cancer, many having died.
Several years ago, despite not knowing my family health history, my provider recommended a mammogram every other year due to being Native. So far, all had been “normal,” with nothing to worry about. But when I went for my annual physical in the fall, since I now know more health history, and with my grandmother and great grandmother having had breast cancer, I was told I should get yearly mammograms, and they scheduled one for me on December 3rd. I thought, no big deal, I haven’t had any problems or felt any lumps, but it’s good to be proactive, right?
Someone from the walk-in clinic was filling in at the regular primary care clinic I go to, but made sure to note on the paperwork that the results should be sent to my regular provider, a nurse practitioner named Tina. When I arrived at the hospital, it was a different tech than I’d had previously, but she was still pretty efficient. Throughout the short process (it only takes a few minutes), I could just tell something was “off.”
I can’t say whether it was having a different tech, or what was up with the whole situation. She was friendly and seemed like she knew what she was doing, but despite this, I just knew something was different this time. As per the norm, the tech told me that they’d send the results to my doctor, and I’d be getting a letter in the mail. This was December 3rd, a Tuesday.
The hospital has an online portal where patients can access health records such as results, reports, etc. Any kind of blood work, tests and visits are uploaded to the portal so it can be viewed any time. Usually the nurse (where I’m regularly seen), Peggy, calls me as soon as they get the results, even before they’re uploaded to the portal. So, I was expecting a call Wednesday morning- but the call never came.
I had mentioned to Jerry when I got back from The Mammogram that something just wasn’t “right.” He kind of brushed it off, said it was probably just that I had a different tech than normal, and that threw off my senses. But when Wednesday, then Thursday, came and went, I told him again that something just wasn’t right. He attributed this to taking longer due to them “probably just being really busy.” I knew he was trying to make me feel better, but it wasn’t working!
By Friday, I’d decided I would call Peggy, the nurse, on Monday. But then on Friday evening, I got an email with a notification that there was a new record in my patient portal. Woo-hoo! Finally! I logged in to check, and read the radiologist’s report, and it said there was an “architectural distortion” in my left breast. The clinic was closed for the weekend by now, but no problem, I have Google, right?
Having been a surgical assistant, deputy coroner, and death investigator, I immediately had to know what this meant. My curiosity was NOT going to allow me to wait to call on Monday. The first thing I read was that an “architectural distortion” is usually a finding that is NOT a mass of any sort. I thought, well that’s good!
But… I also knew that not all breast cancer manifests as a lump or mass. As it turned out, this architectural distortion seemed to be a likely indicator of invasive carcinoma or more rarely, ductal carcinoma in situ (DCIS). I also found that breast cancer is more commonly found in the left breast- and this distortion was in my left breast. At first, I was kind of in disbelief; then panic ensued.
All I could think of were the people in my life. What would Jerry do? My family? I thought of my nephews and Jerry’s grandchildren, how I wanted to see them grow up. I thought of how my dad died of cancer, and my sister and I were the only close relatives my aunt had left; how my older nephew panicked at the funeral, and my younger nephew never even got to meet his grandpa. My grandpa on the Sexton side had just died, and a cousin died at a young age, so I worried about my grandma. My cousin on my McNeil side is a breast cancer survivor, and her brother died of a rare form of cancer. My St’at’imc grandma had breast cancer, and has already lost so much family. They’ve all already endured more than their fair share of loss. I dreaded the thought having to tell them all “Me, too.”
Now I had to go wake up Jerry from his nap and tell him. I think we both were just in shock, and we just laid there staring at the ceiling for a couple hours. Once I had calmed down and slept, the next day Jerry and I both started reading peer-reviewed journal articles regarding architectural distortion. The general consensus was that most mammogram call-backs are NOT cancer, BUT, it seemed that with architectural distortion, there was a 22% chance it would be cancer. To me, this meant about 1 out of 4 would have cancer, and that didn’t sound like very good odds, especially considering my newfound family history.
The report in my portal recommended a follow-up diagnostic mammogram with magnetic compression and an ultrasound. On Monday, I called the doctor’s office so Peggy and the nurse practitioner, Tina, could get me scheduled. I was so distraught that I didn’t realize that Tina herself had actually answered the phone. I just started telling the person on the other line what had happened.
Then the woman on the phone said, “This is Tina,” and she was absolutely mortified, and extremely apologetic, that they had not received the results. I felt so bad for her as none of this was her fault. I let her know that the one filling in had even made sure to note to send the results there, that something must have just gotten mixed up. I’m not sure if the results were even sent to the walk-in clinic, as I never received a call or anything from them, either- and they always follow-up, even after a flu vaccination! This seemed to be just some sort of technical “glitch” that just so happened to occur with me, and unfortunately, with this particular mammogram.
Tina was very reassuring to me, and said this was a pretty common occurrence, and not to worry just yet. Literally moments later, less than five minutes, Peggy was calling me back regarding the next steps. As we’d already had airline tickets to Iowa, the soonest I could get in for further testing was December 26th.
The wait was horrible. Everywhere I turned there was a television commercial, billboard, social media post, all about cancer. It was everywhere. I couldn’t seem to go even an hour without being reminded that cancer exists, and that I may have it. Even in daily conversations, something always came up that we would do “later.” Like a desire to go on another beach vacation, to go visit my peoples’ homelands. Would I even still be around to do these things? Would I ever get to “return home” to St’at’imc Territory, Unalaska, and Atka? Would I get to see the young ones in my life graduate?
Little things that were normally mundane became emotional triggers as well. I always color my hair in the early winter, as it’s usually drab looking from being sun-stripped, and the roots look darker than the rest that was exposed to the sun. But it seemed pointless. My hair is very long, and coloring it is labor and time intensive. I was convinced I was either going to die, or lose all my hair, so there was no point in coloring it.
Some of my sports bras were wearing out; and I normally would have bought more for running and working out. But, would I even have a need for this type of garment? Would I even be alive by the time they completely wore out? Why was I even going on runs or lifting weights, anyway? Everything seemed either pointless, or was a reminder that “something” showed up on my mammogram.
With it being Q4, and being so busy with work, I just didn’t have time for all the extra stuff. But it still loomed over me like a dark cloud I just couldn’t get away from. I was already at my breaking point, and now I was scared $hitless. I caught myself several times a day having to take deep breaths just to stop from bursting into tears out of fear and being so overwhelmed.
Of course, as Murphy’s Law would have it, it seemed like everyone wanted my time. I was literally working from the moment I woke each day until the moment I went to sleep. Since my work involves social media posts, I made sure to check in and click “like,” etc. when online so people knew I was still alive. But it was almost like people took this as an invitation of sorts…lol. Nobody wanted to leave me alone! Or so it seemed, anyway.
Outside of emergencies, each November through January, I’m unavailable. I love my family and friends, but my bills don’t pay themselves. Family and friends deserve better than what I can do for them or give them during Q4, and I don’t want to end up snapping at people, or for them to think my crankiness is their fault. So, I’ve always made this time period one where I’m just not available.
I elected not to tell anyone what was going on, as I didn’t want to worry anyone- at least not until I knew more about what was happening. Other than Jerry, I told one person, a female Alaska Native friend who has become like family, who also understands the increased risk of cancer for Natives, and knew of my family history. I trust this person because she’s straight forward and doesn’t just tell me what she thinks I want to hear- she’s honest and rational. I struggled with the idea as it wasn’t fair to burden her, but I needed someone who would “get it.”
She was only person I really communicated with to any extent, aside from Jerry. She had her own stress – it was the holidays and a busy time for all, yet still made time for me. If I didn’t reply right away, she understood (still does and always has), and texting and messaging with her really helped get me through all this. No offense to anyone else, but I didn’t have anything to hide from her, she knew what was going on, so she’s the only one I didn’t try to avoid…lol.
My mind was distracted from being able to enjoy anything- communication such as emails, texts, phone calls, absolutely everything I normally really enjoyed, became unwanted, downright dreaded. I had zero ambition or desire to communicate with anyone, due to this dark cloud. On top of that, was the added stress of “having” to avoid all these people and their attempts to reach out. I couldn’t tell them why, other than that I was just very busy. This was absolutely true- I do always kind of go into “hiding” during the holidays due to Q4 being when I make the majority of my income for the year. But this time it was compounded by The Mammogram results.
There were a few phone calls with family, regarding our trip “home” for Christmas, but those were brief. There was also the added stress of not knowing how I would handle the whole “dark cloud thing” while in Iowa. I didn’t want it to cause me to be gloomy around everyone, and I didn’t want them to suspect anything was wrong. Thankfully, my 6 year old nephew was with us the whole time, and he kept me busy- physically and mentally!
The flight back from Iowa on the 24th was filled with both sadness from saying “goodbye” to my family, and apprehension about the further diagnostic procedures that were two days away. Then a snafu with Christmas here, and Jerry and his son’s fam almost not even getting to have a Christmas (for other reasons, not having to do with me). I felt bad for them, as they deserved a good holiday celebration- especially Jerry, given all that he’d been through with me. He deserved to come first for once (and one day, I’ll see to it that he DOES).
Christmas night, the 25th, the night before my appointments was filled with both numbness and fear. As I had done several times more than usual throughout the month, I smudged with sage and sweetgrass, and invoked not only the Creator, but every ancestor I have. Asking, begging, pleading for peace, comfort, health, and strength to get through whatever was to come- and for that to be nothing bad. (I actually felt selfish, and also begged for forgiveness for thinking I knew better than them. What if this was important lesson they were trying to teach?)
I work nights and sleep days, and my first appointment for the 26th was at 9:30am, basically the middle of the night for me. This sucked, but it was better than having to wait until January. When we got to the hospital, the “normal” tech who did my first two mammograms, also named Renee, was there. She has always been so compassionate, so despite the friendliness of the one who did my mammogram on the 3rd, I was relieved that Renee would be the one doing this first diagnostic procedure.
She asked how I was, and I just broke down and started crying. The overwhelming busy-ness, panic, fear, and apprehension of the unknown had all but destroyed the month of December for me. The hospital is so lucky to have Renee working there, and I was even luckier to be taken care of by her that day. Having worked in the medical field in several positions, I know almost everyone cares immensely for their patients. But Renee just has something special- she has genuine, true concern and compassion for others, she’s a rarity.
I had just had a whirlwind year of new family discoveries, meeting family I didn’t know I had, finding out I descend from the most resilient people to have ever walked this earth. But also the bittersweet knowledge of all the heartache they’ve endured, both health-wise and from colonial government atrocities. I also had fresh knowledge of cancer history, and… it was Q4. Let’s just say I was an emotional mess. Renee spoke with me in a calming way throughout the whole process, and I was truly grateful for her compassionate support.
After the first procedure, she walked me back into the private room where Jerry was waiting, and said the radiologist would immediately look at the results and decide what to do from there. She even hugged me, and it was so reassuring that she viewed me as a human being who was really scared, not just a patient with a potential disease.
Neither Jerry nor I spoke. I just remember staring into space, for what seemed like an eternity, and being numb but absolutely terrified at the same time. When there was a knock on the door, I could feel my heart- it felt like it was going to leap out of my chest.
The door opened, and Renee was there, along with the radiologist, and both had huge grins on their faces. I think I was still “frozen.” The doctor said, “I knew you were scared and I wanted to tell you the good news myself,” and the results were benign. They had gotten enough images and information that they didn’t even have to do further testing, so the other appointment for that day was cancelled. (I would later read the report, which was BIRAD 2, benign finding.)
Crazy as it may seem, I again broke down and just started sobbing- tears of joy, of release, of being grateful to Renee, the radiologist, my nurse practitioner and nurse, to Jerry, to my Alaska Native friend who was there for me, to Creator, to my ancestors, to everyone, every entity who made these results benign. I think I actually pinched myself while in that room to make sure I wasn’t dreaming!
I feel like I was weak throughout the wait, but that the experience made me stronger. It forced me to see what I would miss, affirming what was most important in life. The immediate sense of dread and panic when it came to my loved ones the moment I read those initial mammogram results told me what I needed to know. My family and friends, all my loved ones, mean more to me than anything else in the world. They’re worth everything to me.
As for my family and friends trying to get in touch with me, as long as I’m in the line of work I’m in now, I’ll still be unavailable during Q4 going forward…lol. But, at least now they know why it was especially bad this time. I promise I don’t avoid people because I want to- and I hope they all now have a better understanding of why I was doing so.
I honest cannot even begin to fathom how those who get positive results for cancer must feel. When Jerry and I discussed the immense fear throughout the month, we both noted that during all our research sessions, we couldn’t really find anyone who wrote about a similar mammogram finding being benign. There were a few anecdotal message board posts, but no one elaborated unless the results were found to be cancer. I can read scientific journals, research results, and statistics all day long, but nothing compares to human experience.
I completely, 10000000% understand why people don’t share experiences such as mine. I spent the entire month terrified, and Jerry felt it, too. We were both scared enough for everyone, so there was no need to have even more people scared, especially since I, myself, didn’t even have further diagnostic information or results. So, I know many people may feel their loved ones might be upset about being kept in the dark.
I think if I’d been able to find articles and stories from people whose results were benign, I may have had more hope and less anxiety. It’s an awful feeling to know that many women go through this type of thing every single day. While this post may be TMI for some, I’d like to think it will bring a sense of hope to others. If I can alleviate just one person’s panic by a tiny bit, it will have been worth it. It’s for this reason Jerry and I decided I should write about my experience.
Do I regret the mammogram? No, absolutely not. I won’t go so far as to say my fear was irrational, but in hindsight, I think the waiting exacerbated the fear. Even with my stroke, I had answers a lot sooner, so there wasn’t as much waiting, therefore less time to dwell on it. And if my nurse practitioner had received the results as would normally have happened, they could have explained things to me without my having to do my own digging. With my previous health issues, I also wasn’t already stressed from Q4!
I recognize that I’m not “out of the woods,” and never will be. With my family history of cancer, as long as I have breasts, I will always be at risk. I will always have an underlying fear, and likely more mammogram call-backs. But I also now know that “something showing up” on a mammogram doesn’t always mean something bad. It may be benign, nothing, and chances are that’s the case. And Tina, Peggy, and Renee all said I can always reach out to them- so if and when it happens again, I know I’ll have an outstanding support system with the providers here.
Get your mammograms as directed by your provider. Be proactive with your health. If you have concerns, contact your provider before you panic. And, if you experience a cancer scare, and it turns out to be benign, please consider writing about it, even anonymously. Taking the time to post your experience for others to see or read could potentially help relieve someone’s fear and anxiety, even provide a sense of hope.
As for me, I’ve been wanting to “check out” for a while, and be away from work or obligations. Haven’t had the chance yet, but it’s going to happen. We went to Dallas for a quick getaway, but did work stuff. Jerry will be off for a few weeks soon, so I’m going to set aside time away. He doesn’t know it yet, but we’ll be heading to an undisclosed location, and I’ll be ignoring my phone and other devices.
If you find yourself being ignored… no worries. For those who may be concerned- I really am okay. I just want time to simply “be.” To enjoy life, to spend time together, without having to answer the phone or respond to any form of communication. I really truly need this, just to recuperate from Q4 and The Mammogram. This is going to be my selfish time.
As for daily life? We tend to place ourselves at the center of everything. Many of us tend to expect the rest of the world to fall into place around us and our situations, without regard to others, or how it will affect others. This is when we need to be unselfish.
A friend is currently enduring a scary situation with her loved one right now, and it makes my experience look like a cakewalk, yet she still sees others’ hardships. I also know there are many others in situations similar to mine, who are very scared right now, and awaiting further information and diagnoses. I’m not going to share my initial BIRAD number (a number used for mammograms to report results), as I don’t want anyone to assume that if theirs is different or the same, that the further testing results will be different or the same. We’re all different, with differing circumstances.
Life will throw hardballs, and we all will have dark days. Things aren’t always what they seem, and outcomes will vary with each person and situation. Communication is key, as well as being sensitive to what others need. (Good EQ can help in determining whether to press someone, or leave them be.) If your experience may help others, please consider sharing. Take time for yourself, as good self-care will allow you to be a better partner, friend, sibling, etc. Be considerate and kind to others. You never know what battle they may be experiencing. Live life.