Been on a little writing hiatus while health issues were addressed, and I promise I will get back to the blog challenge prompts, but I need to say something–
Cancer is stupid.
Cancer sucks.
I’d like to throat-punch cancer.
OK, got that out of my system for the moment. So let’s have a little personal history lesson.
When I was a child, I was covered in moles. No biggie. But then when I was a young teen, the ones on my neck started doing something weird–they would pinch themselves off and dry up and fall off. Doctor was like “Hmm, they aren’t supposed to do that.” So off they came–pathology always came back benign, and I added another battle scar here and there. I have a lot of scars, because my body really doesn’t like being cut–I can still count the number of stitches on biopsies performed decades ago.
Then in my late 20s, I started gaining weight and feeling blah. Had a family history of thyroid issues, but the doctors just told me to limit my calorie intake and exercise more. I was raised to trust doctors to know what they are doing, so I didn’t push it.
When I was pregnant with my second son in 1998, I found a lump on my upper right thigh. It was roughly the size of a ping pong ball when I went to the dermatologist. Dermatologist looked at it and declared it was just an ingrown hair and sent me away with not even a poke. My (now ex) husband didn’t give a crap, because it wasn’t all about him. So I had my son and buckled down to raise 2 baby boys under the age of 2 and didn’t have time to worry about this bump on my leg. Realized I was already a single parent for all practical purposes and ditched the husband.
Met my now husband in November 2001. This boyfriend was a different breed than my ex, and when he saw the now golf ball sized lump on my leg, he FREAKED. It was coming off, no argument. So I made the arrangements, and my dad took me to the hospital for the surgery in December 2001, then treated me to lunch and sent me home to take it easy after making sure the boys were settled in for the evening. 2 days later I was at work (high school special education teacher) when the secretary told me I had a phone call. I went to the faculty break room and took the call, and the room got a little fuzzy around the edges as the nurse said “So, it’s malignant, and we didn’t get it all, so we need to go back in a month and take more off.”
This was the first time I hadn’t heard “benign.” It took me a good hour to process what I was hearing.
Went back a month later and got the rest of the dermatofibroma sarcoma removed–learned what “clean margins” means.
Cool. We’re done with this nonsense, right?
Ha.
My husband and I welcomed our daughter to this world in December 2003. Went in for my 6 week check-up, and the doctor discovered pre-cancerous cervical cells. Unfortunately for the doctor, he did this biopsy with no sedation, and I nearly kicked him into the wall. When it came time to remove the cells with the LEEP procedure, I was sedated. Smart man.
At this point, I was starting to mistrust my body. 2 cancer diagnoses in 2 years was not my idea of fun. Especially when they were not even remotely related to each other, so it wasn’t even a recurrence of the first one.
And I am still gaining weight, feeling blah, etc. Also had a few aunts die of breast cancer, so the doctors decided I might warrant watching closely–welcome to yearly mammograms starting at age 35. Doctor still claimed I just needed to cut calories and exercise and ignored my concerns about the family history of thyroid issues.
Got a hysterectomy in 2010 and breathed a sigh of relief that at least uterine or cervical cancer wasn’t going to take me out. But I still felt like crap.
I was getting nowhere with my family doctor, so I went to my rheumatologist in 2011–she had been treating my rheumatoid arthritis with methotrexate tablets for years, which is a low dose of chemotherapy. I am pretty sure she saved me from any cancers really going gangbusters. She took my complaints seriously and referred me to an endocrinologist. Endocrinologist was skeptical, because my bloodwork was great, my thyroid levels looked wonderful, and she couldn’t feel anything odd when she pushed my throat.
BUT.
She listened to me, and to make me feel better, she ordered an ultrasound. Well, it didn’t feel odd, but it sure looked odd. So I came back and they did a biopsy. No anesthesia and hurt like hell, but I didn’t kick this nice woman who was finally listening to me.
She didn’t like the biopsy results, so I went under the knife in 2011 and they removed my entire thyroid that was riddled with cancer. 8 of the 10 surrounding lymph nodes were also cancerous and removed. As slow growing as thyroid cancer is, this meant that it had been there for years.
I fired my family doctor and found a new one for our entire family, cuz f*ck that.
Returned to the hospital in January 2012 and had radiation therapy. That was a wild experience. I had to swallow this giant pill and then stand in front of the hospital room window as doctors in hazmat suits waved a Geiger counter wand at me for a couple days until they declared I was no longer radioactive enough to be isolated (sort of) and sent me home. For 10 days I had to sleep in the spare bedroom and my kids had to visit with me standing at the doorway 10 feet away–the cats didn’t care and came in and kept me company. All of my chairs and computer keyboard and phone had to be covered in plastic so I didn’t contaminate them. I couldn’t cook, and all of my eating utensils, etc., were disposable. But my kids are used to being raised by a village, so between my husband and my parents, everything was OK.
On one of my first outings when I could rejoin the living and not make anyone get radiation poisoning by being near me, we went to the store. I walked past a table at the entryway where people were selling “Cancer is stupid” shirts and my son called me out on it–he said of all people, I deserved to wear that shirt, so I donated $20 and wore that shirt until it fell apart.
Went back in February 2012 to do a scan to see if anything was glowing to indicate that the thyroid cancer cells had spread. The radiology techs were scratching their heads, because they expected glowing in the lymph nodes–not my lungs. So now I got to add a yearly CT scan of my lungs to the testing regime.
A little lung history–I developed a mild cough when I was 18 (1986). I grew up on a farm with crop dusting in the area, and every once in awhile I would find little blobs of white powder in the yard that made a cool purple cloud when stomped. I also grew up with a dad who smoked, so secondhand smoke was a constant companion. So who knows what might have been an underlying factor–either way, I was coughing. It started out occasionally, and usually ramped up from November to March–that was odd, since that is not peak allergy season. Over the years, it got worse. This cough isn’t a tickle. I cough until I throw up. I cough until my legs and arms go numb. I cough so hard that I pull the muscles that hold my eyeballs in place. I cough until my ribs dislocate. If my costochondritis flares up and I cough, I’m done–I head to the ER and get prednisone, stat. Covid hasn’t done this cough any favors–I have had Covid at least 3 times now, despite being vaccinated (really need to go get a booster someday), and each time my cough has gotten worse.
I go to the doctors constantly to see what they can do about this cough, because it is annoying and makes my quality of life suck. I go to a pulmonologist, an ENT specialist, an allergist, an infectious disease specialist, and I even went to Mayo Clinic for a bunch of testing–Mayo in Rochester, MN, is lovely and I want to go back as a tourist sometime to that area. What all of this has shown is that it is not GERD. My diaphragm is a little weak on the left side. I have achalasia, which is a fancy word that means food gets stuck in my throat sometimes. My lung function is abysmal–on a good day, it’s around 40%. I can’t walk up stairs, bend over to pick stuff up, carry heavy items, walk for long distances, or skip my meds unless I want to cough for a good 30 minutes while trying to breathe. I take Zithromax 3 times a week to prevent bronchitis. I take glycopyrrolate twice a day to keep my airways dried up. I take Zyrtec and Singulair on the off chance that it is allergy-related. I live on Dayquil and Benadryl to keep mucus thin and dry up what is left. I always have cough drops in my pocket. I have 3 nasal sprays I do twice a day. I have the Navage nasal rinse system. I have multiple nebulizer medicines. And that is just all so I can function minimally. I struggle to walk through a store to do shopping without stopping at least once to catch my breath. I haven’t seen the last few places my kids have lived because they are not on the first floor and there’s no elevator. If sightseeing involves walking and inclines, I am not able to do it. Gave up a lifelong dream to tour European castles because I would never be able to climb the stairs. I have to choose carefully the days I do laundry, because that means bending over and lifting wet clothes out of the washer and up into the stacked dryer. I had all of my teeth pulled years ago, because cough drops cause decay.
So yeah–this cough has made a mess of my life. And I kept going to doctor after doctor after doctor asking them to make it stop and figure out what is causing it.
Every year the scan showed the spots on my lungs, but since they weren’t growing at all or just barely, the pulmonologist kept a “wait and see” stance. Finally last month I hit my limit on how much this cough is wrecking my life and the doctor agreed to do a biopsy.
Neuroendocrine tumor
Carcinoid tumorlet
Synaptophysin positive
INSM1 positive
Pankeratin positive
Ki-67 is pending.
Well, well, well… would you look at that. As I mentioned before, I haven’t trusted my body for years–it’s a traitor and I just wait for where cancer is going to crop up next. Every year my endocrinologist checks me for thyroid cancer recurrence and says “Cancer free!” and I think “yeah, sure.”
Now I have an appointment with the oncologist on June 6th. My kids have done their research, so we know treatment options are going to be surgery, chemo, and/or radiation or all 3. They tell me the world record for different types of cancer in one person is 12, so we’re about halfway there. I’m up to about 5 or 6 different types of cancer at this point. In 2023 I noticed I had a pimple on my left temple that was not going away; it finally clicked that this was probably not a pimple and I should go get checked for basal cell carcinoma since I had seen similar spots on my dad and his mom. Got that removed and confirmed as not benign, added a facial scar to my collection, and carried on with life.
It’s annoying that my kids have never been old enough to remember a time when I was not a cancer survivor. They have grown up with me always getting surgeries and scans and taking meds. It is frustrating for me that I haven’t been able to be more active with them. I make a great spectator and can cheer from the sidelines (as long as I don’t have to climb too high in the bleachers) and drive them any place they need to be, but I can’t DO stuff. Luckily, coughing doesn’t stop a sense of humor (although laughing can trigger it), and my family uses dark humor to cope. I’m glad my kids are resilient and pragmatic–they make a great team when it comes to facing whatever we are dealing with. And I’m glad they have colleagues and friends who keep them entertained and busy and able to enjoy life. We don’t do collapsing and refusing to get back up well around here–we might sit down and ponder, but then we slap our knees and say “welp” and get up and power forward.
I’ll probably be back with an update on this latest adventure at some point, but for now, it’s time to get up and go forward.