One week post-op. I’m feeling pretty good in general. My body is sore, but it’s nothing I can’t handle. Both my spirits and my energy level are high. I’ve spent this first week crocheting while going down streaming rabbit holes, searching for obscure movies and TV shows. One of my favorites being “Nightbitch”, based on a novel by Rachel Yoder, starring Amy Adams. I’d put it in the category of relatable Black Comedy with a horror vibe. In a nutshell, it’s about an installation Artist who gives up her career just as it’s gaining momentum in order to be a stay-at-home Mom. The story illustrates her feelings of lost identity & wasted talent, her pursuit of new meaning & purpose. There is much more to this story, but I’ll shut my trap to avoid being a spoiler. You’ll just have to watch it…you won’t regret it!
I’m wearing compression garments 24/7 (chest and abdominal)…only to be removed while showering. Showering allows me to check the state of my bruising, which is still gnarly. It is the worst bruising I’ve seen in my lifetime. Even my lady parts are deep purple, due to blood pooling. But, I’m told this is very normal, and to be expected.
I keep this in mind upon noticing that the bruising on my reconstructed breast (the mastectomy side) is starting to appear darker, while the bruising on my augmented breast (the healthy breast) is fading. I’m sure this is all part of the healing phase, no need to worry.
11 days post OP, and I’m feeling like my recovery is reverting, I’m going backwards. I feel like total shit, and I can’t seem to get comfortable no matter what position I’m in. The pain is deep and all encompassing. I can’t muster the energy to do anything other than breath. I can’t even stand to look at my iPhone, the light from the screen hurts my eyes…reading nauseates me. The bruising on my reconstructed breast looks far worse now than it did a few days ago. Once again, I convince myself that it’s normal and carry on. As evening falls, the urge to vomit becomes harder to suppress, so Brian gives me an anti-nausea pill that the surgeon sent me home with. The pill was useless. I hurled my guts out like Regan MacNeil in the Exorcist….multiple times throughout the night. Early the next morning, Brian calls my Surgeon in Rochester to report what was happening, and to seek her guidance. She tells Brian to get me to the Emergency Room in Red Wing immediately. We arrive to the ER, and to our surprise, they wheel me back to an exam room before we even had a chance to sit in the waiting room. Red Wing Mayo ER is notorious for making patients wait multiple hours before being seen. I have a hunch Rochester may have called Red Wing to tell them I was in-route, why else would they act as if the were prepared for my arrival?
The first order of business is an IV to pump fluids back into me. They also give me an intravenous antiemetic (anti-vomiting agent), and an intravenous painkiller. I don’t know what painkiller they are giving me, I’m too sick to retain all they are telling me. I just trust they know what they are doing. Well, whatever they gave me worked, because I’m feeling like a normal human again at a pretty fast clip. The nurses and attending physician run through a barrage of questions, and test me for a multitude of infections and viruses. The testing came back negative for all suspected causes. I was clean as a whistle. They do have one theory, though. Just a couple of days prior, Brian was hit by a stomach bug that gave him the old Hershey Squirts. It was suspected that I may have caught that same bug, except the evacuation came from the other end. The attending physician took off my abdominal compression garment to check my healing progress. He makes note of the dramatic bruising, but says it’s normal. He opts out of examining my breasts, assuming they were healing at the same rate. Once I’m stabilized, I am sent home with no aftercare instructions other that to stay hydrated and take it easy.
14 days post op: Off to Rochester Mayo I go for my first post-op follow up with Plastics. My reconstructed side looks like a blackened chicken breast with a single pepperoni slice in the center (nipple joke..I’m hilarious!). The healthy augmented breast look perfect. I cross my fingers that the surgical assistant will tell me it looks normal, but my instinct screams otherwise. My instinct proves to be right. The surgical assistant’s face drops and she audibly gasps as she examines me. It’s a hematoma…and a bad one. It could very well require another surgery to correct. She grills me about my physical activity, assuming I deviated from my physical restrictions. I tell her the only thing I’ve been doing is crocheting and watching Netflix. She tells me that crochet is absolutely off limits, as it is far too much repetitive motion for my upper body. The surgical assistant left the exam room to talk directly to my Plastic Surgeon, Dr. V, to determine the next steps. I forgot to tell her about my Exorcist-level vomit marathon, shit! As soon as the assistant reenters the room, I fill her in on the vomiting episode from a few days prior, and she responds: “Yes, Dr. V told me she instructed you to go the ER in Red Wing for a vomiting spell. She believes this is what caused your hematoma: the pressure from the violent vomiting burst your freshly cauterized veins.” The plan of attack: HEAVY compression on my reconstructed breast and ZERO physical activity for the next 2 weeks. No crochet, no typing, no writing…and of course, no housework or exercise. I cannot let my blood pressure exceed 100 bpm (which is tricky considering my resting heart rate is right around 90 bpm). My surgical assistant tells me I can read books and watch TV…and that’s about it. I’m instructed to come back in 2 weeks for another follow-up. If the hematoma does not show signs of resolving itself, I will need another surgery to scrape out the old lingering blood, and swap out the existing implant for a new one. She went on to explain that I may develop a capsular contracture (scar tissue) in the reconstructed breast, so she prescribed a medication proven to prevent it in some patients. I’m sent home feeling defeated and imprisoned by the severity of my physical restrictions. What the fuck! How the hell and I supposed to entertain my brain for the next 2 weeks? I can’t just sit and do NOTHING!!!
I manage to develop a routine of Do-Nothingness during this time. I power through a bunch of books which had been collecting dust for the past few years. The books I buy, but never get a chance to read…well, they finally get their time in the spotlight! It’s nice having an excuse to actually READ my books, rather than relinquish them to the Dust Bunnies. These two weeks are turning into a fun cognitive adventure.
Tag: Breast cancer
Chapter 22: Back In The Saddle
4 weeks post-op, and my driving restrictions have been lifted!
IT’S MOTORCYCLE TIME, BABY!!!
The mastectomy couldn’t have been timed out better, being recovered by the time riding season came back around. Being March 28th, it’s still a bit chilly here in Minnesota…but under my full-face helmet and cold weather gear, I manage just fine. I actually prefer riding in crisp, cool weather. I’ve always thrived in the cold…likely a carry-over from my Scandinavian ancestral roots. Minnesota winters don’t faze me a bit, aside from the fact that my motorcycles go into hibernation. I’m always running hot, and with endocrine therapy in full swing, I’m running like a locomotive full steam ahead: Choo Choo, muthafukas! The cold air is a nice antidote to my smoking hot body temperature.
It’s been over a month since I last rode. My husband and I managed to get the bikes out for a pre-surgery ride 2 days before my mastectomy. Which in itself was amazing considering it was February 27. An unseasonably mild winter.
I dust off my helmet & bust out my gear, and give my Road King a pre-ride check. All geared up, I fire up my trusty steed. That big thumpy Milwaukee Eight motor growls at me as if to say: “Where you been, Bitch? Let’s fuckin’ GO!”. I peel off on my Road King like an escaped convict down the highway. It feels like nothing else, to be on two wheels. I am in total control. the master of my own universe. No one is bothering me, no one is barking orders at me, no one is hounding me for favors, no one is begging for my attention. I am FREE.
Yet, at the same time, I am alone. Even with my husband riding along side me, I am alone on my bike: solely accountable for every move I make. Motorcycling is inherently a solo sport (unless you ride with a passenger). There is no room for error. I must be decisive and quick to action. There is no time to second guess myself. One wrong move, and I am road kill. This may sound unappealing to some, but to me it’s an excersize in self-sufficiency….and it reminds me that I’m ALIVE. And baby, after cancer, I need to feel alive more than ever! And, that’s what makes this maiden post-mastectomy ride so sweet!
Chapter 20: Follow Ups – and Downs
Two weeks post-op, and I head back to Rochester go for a few days of fun filled follow-up visits. I’m still under restrictions, so I cannot drive myself there. Both Brian and my Mother-In-Law tag team chauffeur duties. The first appointment is with my Surgical team to check my post-op progress. The second is with my Oncology team to discuss my pathology report and further treatment. The third is with Radiology to discuss potential radiation. The forth is with Plastic Surgery to go over my Reconstructive options. The fifth is back to the Surgical team to remove my drain. And the sixth is back to Plastic Surgery to begin the first stage of the reconstruction process.
During the follow-up with surgical team, they toss me the standard line of questioning regarding my physical condition, and examines my surgical sight. I am healing like a champ, no signs of infection or distress. They are satisfied with the results of the robotic mastectomy. I am a Blue Ribbon, text book case study for the robotic clinical trial. They are content with handing me over to Plastics to handle my “body work”. I am cleared to proceed with reconstructive surgery…YES!
Next is a visit with Oncology to go over Lumpty Dumpty’s full pathology report. A barrage of fancy terminology and numbers: Word Salad with a splash of Math Vinaigrette. To put it simply, my numbers are good. So good in fact, that there is no benefit to chemotherapy. My tumor, although the invasive type, had only spread to 1 auxiliary lymph node which was also removed during surgery. There is no cancer left over for Chemotherapy to kill-off, rendering it unnecessary. I can undergo chemo as an extra precaution if I choose so, but it won’t affect my odds much. My rate of recurrence WITH chemotherapy is 3%. My rate of recurrence WITHOUT chemotherapy is 4%. That 1% difference is not enough for me to justify putting my body through that shit. I witnessed what chemotherapy did to my Mother. Her body wasted away, she lost her hair, she lost her strength, she lost her quality of life, and the cancer still killed her. Knowing the hell my Mom endured, I am elated to discover that chemotherapy is not in my cards. The Oncology team informs me that I may need radiation to kill off any remaining cancer cells that may be lingering in my artpit area. Radiology would need to run my numbers to determine this.
Oncology informs me that endocrine therapy is the next logical step, considering my Cancer is receptive to estrogen. They explain that my cancer feeds off estrogen, so they want to stop my estrogen production as a preventative measure. The easiest way to do this, is to stop my ovarian function. I undergo a blood test to determine my estrogen levels and my menopausal stage. My bloodwork reveals that I’m pumping out copious amounts of Estrogen. I essentially have the ovaries of a 20 year old…which seems odd considering I’m 47. As a result, I am prescribed a drug called Goserelin: an implant placed in my abdomen every 12 weeks which shuts down my ovaries. With the Goserelin, I’m literally being put into a state of medically induced menopause…hot flashing my pant off. I’m also prescribed a daily oral pill called Tamoxifen, an estrogen blocker, which I am to take for the next 10 years. My Oncology team explains that my body will be entering into a menopausal state very fast, and that my symptoms will be hard & fast compared to that of a woman entering natural menopause. On my behalf, they schedule an appointment with the Women’s Clinic at Mayo, explaining that they will be able to help me through the process. I do not qualify for hormone replacement for obvious reasons, but there are other treatments to ease my symptoms if they become problematic. Hearing this freaks me out a bit, until I consider the alternative: chemotherapy. The way I see it, menopause is a natural part of a woman’s life cycle. I will hit that biological milestone at some point regardless, so I might as well get it over with early. I’d much rather deal with an inevitable process like menopause than rot away on chemotherapy.
Next up is a visit to Radiology. They throw a bunch of calculations at me, which sound very similar to Oncologies Math Salad. Their numbers add up to me NOT needing radiation…hell yeah! Much like the chemotherapy determination, the benefit of Radiation is so minuscule, that it’s not even worth putting my body through it.
I immediately recognize my good fortune amidst this gutter of bad luck: no chemo, no radiation, low chance of recurrence, and a high survival rate. I’m not taking it for granted.
A few days later I meet with my Plastic Surgery team. I only want to be restored to my original size, to look like cancer never even happened. The Plastic Surgeon informed that she would have a hard time making my new breast match my existing breast due to my small size. The simplest route would be to add a small implant in my existing breast to make it symmetrical with my future new breast, so I would be a larger size regardless. I can go as large as I please, as large as I’m comfortable with. I don’t need to settle on a size yet, as I still need to go through the expansion process. To explain the expansion process, I need to backtrack a bit. During my mastectomy, after my breast tissue was removed, a tissue expander was placed where my breast used to be. This expander is inflated with saline in stages to slowly stretch the skin to make room for the final implant. I return to Mayo every 2-3 weeks to get my expander inflated until I’m satisfied with the size.
Learning that I can pick my new breast size rocks my world a bit. I’ve always been content with my tiny boobs. So small, they don’t even fill an A cup…if they were to be graded, they’d get an A minus. My tiny boobs never got in the way. I didn’t need to wear a bra. The only reason I wore a bra at all was to keep my nipples from being noticeable through my shirt when I was cold. I never considered anything different…until now. After a discussion with my husband, I decide that the prospect of a new set of big, beautiful breasts is a consolation prize for cancer taking away what I once had, my silver lining. Go Large or Go Home!
A few days later I return to meet with the surgical team to have my drain removed, followed by another appointment with Plastic Surgery for my first expander inflation. My Mother-In-Law, Janet, did the driving this particular day, which was very sweet of her considering she hates driving in cities as large as Rochester. While sitting in the waiting room, we joked around about my last moments with my Love Sack. I asked Janet if she wanted to give my Love Sack a farewell squeeze, which she did…and, of course, I had to take a photo of!
Unfortunately, Janet was having issues with her leg, rendering her nearly unable to walk after while..and there is a lot of walking to be had at Mayo Clinic. I found a wheelchair for her. We laughed at the irony: I’m the patient, yet she’s the one in the wheelchair.
After finishing up with my appointments, I treated my Mother-in-Law to Victoria’s Italian Restaurant to show my appreciation for driving me around and keeping my company. We had such a good time hanging out, in spite of the circumstances. I’m lucky to have her! Love you, Ma!
Chapter 13: Dichotomy of Fortunes
Welcome to 2024! It’s been nearly 2 months since my invasive breast cancer diagnosis, and I’m still in the consultation faze, waiting for treatment to begin. Patience has never been a virtue I possess. I am a very impatient patient, so to speak. If I were to write the script, I would ride my Harley-Davidson right through the emergency room doors and demand an immediate mastectomy…by way of brute force and intimidation. Although an epic scenario, that’s not the way this works. Be patient, trust the process.
My best course of action now is to focus on things within my control and be grateful for the good fortune I do have.
During this time, my mind weaves through my dichotomy of fortunes. The unfortunate state of my internal health, intermingled with the fortunate circumstances of my external world.
The full extent of my cancer is still unknown. I may need additional surgeries, I may need chemotherapy. This will be determined after my initial mastectomy, once a full pathology is conducted on my tumor. This situation is out of my realm of control. I will attempt to put it out of my mind and cross these bridges if/when they present themselves.
What I do know: I will be out of commission for an extended time after my mastectomy, so I am relishing my able-bodiedness while I still have the luxury. Simple things like washing my own hair has now become a ritual I savor, because I will not be able to lift my arms above my head during my recovery. Thankfully, I have a loving husband who is willing to take over such tasks. But hey, on the plus side: I’ll still be able to wipe my own ass! The last time I was this excited about the ability to wipe my own ass, I was about 2 years old.
Among my fortunes, I have a devoted husband who is my comrade in arms, battling along side me in all aspects of adversity and crisis. My husband, along with my adult Son, my Dad, my Aunt Marie, my extended family, my In-Laws, my close friends, my work friends…they are my shield wall, they fortify me. My people are my strength. I am not alone.
I work for a great company that allows me the flexibility to work from home anytime it’s necessary, and gives me the time off needed to attend to my health. They provide excellent health insurance coverage, which grants me access the best cancer care available.
My care has been turned over to the Mayo Clinic in Rochester, MN., which is the top ranked hospital in the world based on multiple surveys. There are people who travel as far as half-way around the world to receive care at Rochester Mayo, while I am a mere 40 minute drive away. The best cancer treatment I could possibly receive is in my metaphorical back yard. I won the Lottery of Proximity.
Another fortune I do not take for granted is my material prosperity. My husband and I earn a comfortable income, and have managed to squirrel away a decent nest egg. Because of this, we are prepared for the financial set-backs my cancer may cause us. We have a safe, well-maintained home. We have a pantry full of food. We have dependable vehicles. We have a garage filled with Harley-Davidson motorcycles waiting for me to commandeer once my cancer is killed.
Mentally, I’m tough as nails. You would never guess I was sick unless I told you. I do not wallow, I do not pout. I carry on as if I’m healthy. For example, I never call-out sick from work. The only time off I take is scheduled in advance: doctor’s appointments & vacation. The world doesn’t pause for me, so I must keep up. Sink or swim. I do not slow down unless I’m forced to. So, when it comes time for me to go under the knife (or undergo chemo if needed), it’s not going to take me long to get back in the saddle.
In a strange way, I am probably the best person to end up with cancer, as I have the all the ingredients to slay this shit!
Chapter 9: No News Is Good News…MY ASS!!!
Tom Petty said it best: The waiting is the hardest part. I’m still in cancer limbo, waiting for my genetic testing to be completed. Invitae (the lab conducting the testing) sent me a text 2 days ago informing me that they received my blood sample, and that it’s currently being processed. Like most things in the internet age, they provided me with an online account to track the progress of my testing. I find myself checking in every half hour or so, not wanting to miss a status update. I do this knowing full well that it can take up to a week for the lab to complete the testing. I realize I’m being irrationally overeager, but I still check in like a manic freak. The reason for my preoccupation: Mayo will not schedule my Double Mastectomy until the first round of genetic testing is released to them. I am walking around with a time bomb sitting on my chest, unable to get rid of it until this formality is completed. Another factor in my frustration: genetic testing is not a prerequisite for cancer treatment, it is optional, voluntary. Had I opted out of genetic testing, I would have still qualified for surgery. But, because I requested genetic testing, surgery must wait until after the results are released. At this point, I still do not know how far along my cancer is, or whether or not it has metastasized, or if I will need chemotherapy. I will not know any of this until after the post-surgical pathology of the tumor. Answers…I want answers so I can plan my life accordingly. I need to know how much time off work I’ll need to prepare for. I need to prepare my finances. I need to adjust my pre-planned motorcycle trips if need be. There are a lot of variables to consider here, and I’m a long-term planner. Once I can put cancer on my calendar, I can feel a semblance of control again. Stay tuned…
Random ramblings:
While discussing my upcoming double mastectomy, told my husband that I’ll have my old tits taxidermied and mounted on a placard. This way he’ll have a trophy commemorating the fun he once had.
Chapter 8: Old Crohn
It’s been a little over a week since meeting with my surgeon regarding my projected cancer treatment. I had my blood drawn for genetic testing 4 days ago. Once those results are in the hands of Mayo, I will be on deck to receive a phone call from Rochester regarding my upcoming Double Mastectomy. The waiting….I know to expect this, but it still wears my patients thin. Things are a bit more complicated than just the breast cancer limbo, though. I am also in the middle of some Crohn’s related bullshit that’s affecting my quality of life. I am experiencing consistent pain and bleeding in my posterior region. A lot of pain, the sort of pain that makes me double over, pain that Tylenol doesn’t touch. My general mood is affected. I find myself edgy and short tempered during conversations. Thankfully, my husband understands that it’s not him that aggravates me, it’s the physical pain I’m trying to power through. Lately I’ve been keeping to myself at work to spare my coworkers of my agitated state. I’m grateful that I’m only in-office 2 days per week, so I only need to fake it for 16 hours. The remainder of the week I work from home, so no one has to bear witness to my immediate misery. I made my Gastroenterologist aware of these developments a couple of weeks ago. He had all of my blood levels evaluated, and a sample of my shit put under a microscope…and everything checked out as normal. I am not satisfied with this determination, so I will be requesting a colonoscopy and pelvic MRI. I need to figure out what is causing these issues and get them resolved as soon as possible. This way I can focus on healing from my mastectomy without doubling over in gut pain and bleeding butthole. These days, living in my body is quite literally a pain in the ass.
Chapter 7: Tits Ahoy!
One full torturous week has finally passed. Today I learn my fate. What is my particular flavor of cancer? How far (if at all) has this cancer spread? Will I need surgery? Will I need chemo? What is my prognosis? All of these things I will learn today.
Brian took a half-day to take me to my 1pm appointment. My Dad called a few days prior, letting me know he was driving up from Austin, MN to accompany me, as well. So, I have good support along side me. I worked from home today, a half-shift. My Dad arrived at the house a couple of hours early, so he was stuck watching me work for a while. That’s OK, though. It gave him the opportunity to see what I do for a living. Plus, he’s good company.
We arrive to Red Wing Mayo early, as I had to drop off shit samples to the Lab before heading down to Specialty Medicine. I’m also dealing with some Crohn’s issues, so I’m killing two birds with one stone at the hospital today. The waiting room time seems abnormally long. Let’s go! Tick Tock, Muthafukas! Of course, the “watching paint dry” effect is more psychosomatic than the passing of time itself. Anxiety will do that. Time this entire week has passed like molasses. “Erin!……Erin!” Finally! The nurse takes me and Brian back to the exam room to speak with the Surgeon, as my Dad hangs back in the waiting area. The Surgeon cuts right to the chase. He knows me well enough by now, that I’m not a fan of fluff and sugar coating. I’m not a child, I prefer to face reality head on. Just give me the facts, Jack!
So much information is being thrown at me. It’s a good thing Brian is here, my second set of ears….my second brain. The Surgeon sums up my pathology report taken from the breast biopsy. He tells me what I already know, that I have Invasive Ductal Carcinoma. The lymph node biopsy yielded no results, as they missed the mark and failed to collect any tissue samples from that mass. The stage of my cancer and whether or not it has begun to spread is unknown. Had the lymph node biopsy been successful, they’d have more information. A full pathology will need to be conducted on the tumor once it’s removed from my body to determine the full scope of my cancer, and to determine my need for chemotherapy. They will need to remove the problematic lymph node, as well. The surgeon went on to explain the first course of action: surgery. He gave me three options: Lumpectomy with radiation, removal of the cancerous breast with reconstruction, removal of both breasts with reconstruction. The survival rate is the same with all three options, but the rate reoccurrence significantly decreases with the removal of both breasts. My immediate gut instinct is towards the removal of both breasts: double mastectomy. My reproductive days are 27 years behind me, so I don’t need my tits anymore. I have a very active lifestyle, and we have a lot motorcycle trips planned for this summer. I don’t have time to fuck around with reoccurring breast cancer. Just cut the puppies off and let me move on with my life. I turned to Brian and tell him my initial gut instinct, and he agrees. It’s his gut instinct as well. I turn to my surgeon and tell him I should give myself time to consider the options, but I’m leaning towards double mastectomy w/ reconstruction. He then went on to tell me some of what to expect if I were to move forward with the double mastectomy. I would be referred to Rochester Mayo for the surgery, as they have Plastic Surgeons on-site for the reconstruction. I would have to consult with Rochester for a full run-down of their specific modus operandi. I was told there are 2 forms of reconstruction: using my own tissue (particularly from my abdomen) to rebuild my breasts, or implants. Which form of reconstruction I’m a good candidate for will be determined by Rochester. So, basically, the surgeon wasn’t telling me much other than: “You have cancer.”, and “Rochester will be able to tell you more.” What he was able to tell me, is that due to my age, weight, fitness level, and overall good health, my recovery time should be fairly fast. And, based on the same factors that predict my recovery time, the chances of needing chemotherapy is fairly slim. He told me that due to my family history, I qualify for genetic testing if I wish to do so. This would not play a factor in my current situation, but it would be good information to have for future reference. So, if it turns out I have a genetic disposition to other types of cancer, I can be proactive. Also, it’s information I can give to my Son…so he can be proactive towards his own health and the health of his children. I immediately said yes to the genetic testing. With that, the surgeon told me he would send a referral to Rochester, and to wait for their call. That is one thing I have learned to expect in this process: to anticipate the WAIT.
With that, we bid the Surgeon fair-well, and walked to Scheduling to set-up a Zoom meeting with a Geneticist in Eau Clair, WI. A genetic consultation is required before the testing can be administered. I was able to get the genetic consultation scheduled the very next day, during my lunch break, which works out perfect: no need to take time off work!
By the time we left the hospital, the three of us were famished. So, we treated my Dad to dinner at Liberty’s in Red Wing. Liberty’s holds a special place in our hearts. My Mom, Brian, and myself had all worked at Liberty’s in the past. We know the owner & his family, and know quite a few of the employees on a first name basis. I ordered myself an Old Fashioned in an attempt to melt away some of my tension, and to celebrate the fact that I finally have a plan of action! Our moods were high. This cancer isn’t going to kill me. I’m going to kill it before it has a chance to kill me, It’s the Viking way! SKÄL!
Chapter 6: Fun Bags
My maintenance infusion to treat my Crohn’s Disease landed in the middle of Hell Week. Remicade (Infliximab) is the name of the drug. It’s pretty hard core stuff: a low grade type of chemotherapy that’s no longer used to treat Cancer, but works wonders for autoimmune diseases such as Crohn’s. I’m on a “slow drip” to prevent an allergic reaction, so the entire appointment takes about 3.5 hours. “Fun Bag” is my pet name for the intravenous bag that contains my Remicade. The nurses get a good laugh anytime I bust “Fun Bag” out of my vernacular arsenal. I’ve been getting this infusion every 4-to-6 weeks for the last 6 years now. Because there is no cure for Crohn’s, I’m projected to receive these infusions for the remainder of my life. I receive my Remicade in the same Infusion Center where Cancer patients get their chemo. It’s the same Infusion Center I used to take my Mom to when she was receiving chemo. I’ve always felt a sense of guilt that I’m sharing this space with people who could potentially die of their disease. Cancer is a killer. Crohn’s itself will not kill me, but complications from Crohn’s can kill if it goes untreated. In all of the years I have been coming to this Infusion Center, I rarely see repeat patients coming through (not on my schedule, anyway). No long-term Frequent Flyers like me. I like to think this means a good share of the Cancer patients coming through here defeat the beast and get to ring that bell. Crohn’s patients never get a chance to ring that bell. The Infusion Room is our purgatory. Today’s infusion is different, though. It’s my first infusion since my Cancer diagnosis. The irony is not lost on me, that I may soon be joining the ranks of the Cancer patients in here (assuming I’ll need chemo). Will the nurses be able to keep my infusions straight? Will I have to clarify what I’m coming in for: Crohn’s or Cancer? Maybe I’ll wear a different name tag for each appointment, so they know which RX to give me: “Hi, my name is Crohn’s.” and “Hi, my name is Cancer.” At least I get a cool combo-name out of the deal: “Crancer”.
The nurse finally calls me back, one of the regulars. All of the infusion nurses are great. Most have been on board the entire time I’ve been coming in for my Crohn’s. We all know each other life stories for the most part. We keep each other updated on our families and our adventures. As the nurse was prepping me for my IV, I asked her whether the records accessible to them show my new diagnosis. She checked: no record on their files. So, I give her the update. I figured, maybe they can give me some insight as to what to expect from their end of things. At this point, I know nothing other than my diagnosis, so I’m still feeling a bit lost at sea. As soon as I said the words “Invasive Ductal Carcinoma”, she told me she had the exact same cancer in her right breast (mine is in the right breast, as well). She told me how she had a double mastectomy followed my a few rounds on chemo, and she’s been cancer free for the past 5 years. Oh, this is what I needed: the real-life experience of someone who’s been exactly where I’m at! I felt so much better after talking to her. She was the right nurse at the right time, indeed!
Entrance to the Infusion Center (Red Wing Mayo).
Chapter 5: Hell Week
November 20, 2023. 12:16pm. My phone rings. It’s the same Rochester MN number that always shows up when Red Wing Mayo calls. It’s the call I’ve been simultaneously anticipating and dreading. My heart palpitates. I suck in my breath. I answer with the same fake customer service voice I use at work: “Hello, this is Erin speaking!” Please be a female voice. It’s a male voice. It’s my surgeon. If the surgeon calls, it’s bad news. That’s what he had told me on biopsy day. The Surgeon started out with fluff small talk: “Hello Ms. Karlstad! How are you doing today?”, at which I responded: “Well, I’m talking to you, so not very good.” He immediately cut the shit and gave it to me straight: “Unfortunately the breast biopsy…blah, blah, blah.” His voice trailed off in my ears as the dread washed over me. I only heard key words: Invasive, Breast, Cancer. Despite my best efforts, I began to cry while the Surgeon was spewing his devil words at me. Is this really happening? I don’t want to hear this shit! Fuck you, dude! Eventually he quit talking, and I realized he must have asked me a question. I asked him to repeat his last statement. “How soon can you come back in to see me? We need to go over the next steps for treatment.” I responded: “When is the soonest you can get me in?” The Surgeon: “Let me look at my schedule here. Umm, the next availability I have is next Thursday at 1pm. Does that work for you?” Me: “It’s going to have to work, not much of a choice. See you next Thursday.” Click. A whole week? I have to sit and spin for a whole fucking week!?
I was working from home that day. Upon hanging up the phone, my first order of business was to message my supervisor to let him know that shit just got real. He immediately gave me the option to call it a day, but I opted to stay on the clock. I wanted to try to power through, try to distract myself with work. I then emailed my husband, Brian, who was also at work (in-office). He emailed me back immediately, letting me know he was coming home at once. I turned my focus back on to my work, tears streaming down my face, hoping my work phone wouldn’t ring. Yeah, this isn’t going to work. I need to throw in the towel. So, I finished up my current project, cleared out my work emails, and told my supervisor that my husband was on his way home, I was calling it a day. I needed to process this shit. I needed my husband. I needed to collect my bearings.
Brian walked through the door about 30 minutes after he emailed me. I was just logging off of my work computer. He found me hunched over my desk. I didn’t want him to look at me…his cancerous wife. I didn’t want him to see my fear, my weakness. Most of all, I didn’t want to see his fear, his worry. I didn’t want any of this. But, it was happening, I had to face it head on. So, I stood up, faced my husband, and fell into his arms. We both cried.
We were both scared. Scared of the unknown. Is this going to kill me the same way it killed my Mom? Do we start planning my funeral now? Eventually, I told myself to shake the doom & gloom. I had to adjust my mindset, otherwise I would drive myself insane. I need to plan on living, not dying. This is not a death sentence, it’s a test of my fortitude. I had to think about the people in my life who need me alive. My Son, Ethan, is an independent grown man now, but he will need be around to help with his future children. Brian and I are very much in love and invested in each other. If I were to let this kill me, his broken heart would likely kill him. I can’t fold and let this swallow me, I have to charge forward. I decided it was best to proceed as normal, business as usual, until I got more information. I need to focus on something I can control. Knowing I would likely miss work due to treatments and appointments, I started planning ways to make money in the event I lost income. I’d take freelance work, draw some commissioned portraits, make some chainmail jewelry, sell some stuff online…granted I’d have the energy to do so. I just want to be useful. The thought of being useless is just as dreadful as being sick in itself. My mind was spinning, I needed to chill out. I needed some normalcy for the night. So, Brian and I ordered delivery from Liberty’s restaurant, cracked open a couple of Maiden Rock Hard Ciders, and watched an episode of Kill Tony. This bit of normalcy was extra sweet.
Sour Tits 