I take turmeric daily. I thought the odds of me getting cancer were slimmer than say, me getting a heart attack or dying in a car crash involving a rideshare.
I have always had a tiny bladder. “Hold me closer tiny bladder,” I would hear in my head as I would tell people I had to pee. Their eye-rolls and sighs of “not again” would only spear me on to think…this is me – take it or leave it. But seriously, don’t leave…you’re my ride and I really have to pee. BRB.
Last year, my husband and I were in Hawaii. Only two years before, we were getting married on Oahu and it was a fun, exciting, chaotic time. So visiting again last year was like taking all the best moments of our wedding week and expanding and treasuring them, just for the two of us. Our last day, we had an evening flight so the day was going to be filled with wandering, lunch, drinks, more wandering and sitting by the beach. The morning of our last day, I woke up with a terrible burning sensation. I felt like every time I peed, I still needed to. And the pain!!!!!
I called my doctor and asked if she could prescribe me something to make the pain ease up. I had never had a UTI, but I figured this was one. The doc wouldn’t prescribe me anything until I came in to get tested (damn ethical doctor! j/k I love her). I finally went to the drug store to see if there was an OTC remedy which there was. It helped. But our last day in paradise was kind of a mess since I had to be near a toilet and seated.
Upon returning home, I got tested. The results were negative for UTI.
Weird.
There was still pain. But it came and went.
When I talked to the doctor, she said that it was possible that my body was changing and maybe this was part of aging for my body. She said that some medicines for bladder issues made people feel worse than the thing they were trying to cure.
We waited.
It continued.
I went back.
Got tested again.
I told her I needed to see a urologist since this waiting game was yielding no winners.
I meet with the urologist. The conclusion is there is some kind of blockage in my bladder. I assume it’s a cyst that will need to come out eventually. This is good news.
We schedule a cystoscopy for November 7 (a year ago TODAY), where he goes in with a camera to see what the block is and its size.
My appt is in the morning. That same night, I will be heading to LACMA for an event with Shaka, Mads, Jazzy and JRo. I head to the appt. I even have the strangest thought: I am not a person that will ever get cancer. Weird, right? And cocky. But more weird. And cocky.
The nurse numbs me and tells me this is not gonna hurt. She swabs iodine and lots of fluid down there. Doc comes in. Guess what…that camera going up my hoo hoo…it hurts. A lot! He is showing me the live version on a monitor. “There it is…that’s the tumor.”
“What? But but like a benign tumor, right” I laugh
“No, that’s cancerous. And it’s half a golf ball size.”
Those words float in the air as I deal with the pain of the actual camera and the new news of my bladder having a cancerous tumor.
I go to clean up. I use the toilet and out of habit, I put a seat cover down. I am not aware that my whole ass is wet from the fluids they pumped in me. As I stand up from the toilet, I have wet seat cover sticking to my iodine stained butt. I would laugh but I am trying to get dressed to meet with the doctor. But I can NOT figure out how to be an adult at this moment AND get my skin paper-free. I finally work it out and meet with the doctor.
“I didn’t expect THAT news,” I say.
“I didn’t either. Your symptoms weren’t indicating that it was that large or that it was a cancerous tumor.”
He went over the next steps we would take. I would not need radiation or chemo.
We will, instead, do immunotherapy with BCG treatments. It’s a form of TB that when coating the bladder (after they do surgery to remove the tumor), helps the bladder keep any cancerous tumors from recurring. Who was the person who was like, let’s see what happens when I shoot a TB strain into the bladder? Sick person. But I am glad they tried it. Success rate is supposed to be good. Also, bladder tumors happen for the most part, in older men. Who smoke. Or who are around a lot of toxic fumes. I am wondering…how did I get this? Last I checked…I am none of those things. Do toxic people count? Ha, I kid. But seriously…how did I get this?
We schedule the surgery (I will have another doctor since I want it done sooner and mine isn’t available). I have never had surgery. I have never even been under.
After meeting with the doctor, I call Shaka and break into sobs. It’s hitting me in fits and starts. I tell him I still want to go to the LACMA event.
“Are you sure?”
“Yeah, the only thing different right now is that I know what’s wrong with me.”
We head there. I tell Mads and Jazzy. Their reaction is confusion, like mine was when the doctor announced it to me. Only theirs has the added bonus of me saying it as if I am telling them about my new hair cut. Like that scene from “The Room” (go to :30), I just slip it in nonchalantly while I stand up to get more tacos and wine.
We take pictures and check out the cool exhibit and cough at the prices of wine! GASP!!!!
It is exactly the kind of LA night I love and the kind of outing I need to remind myself I am more than this news.
SKIP SKIP SKIP
I go in for the surgery. I am told by friends and relatives that I will wake up and be amazed that it’s over and that I will feel dreamy. My pre-op nurse is a jokester and keeps saying things like, “I don’t know how to put an IV in…just kidding. I DO!” I love a good joking nurse, but am all but looking like I belong on a fainting couch with requisite wrist to my forehead as I see the IV needle out of the corner of my eye. On the upside…I am in a toasty gurney with cute socks and I feel comfortable. They give me something (they equate to a cocktail) so I will relax as I am wheeled to the OR where they will do the countdown. But as it turns out…I was out before we left the pre-op room. I only vaguely remember them wheeling me and me seeing fuzzy figures around me as I try and lift the oxygen mask and yell, “Is this an oxygen mask????”
The next thing I remember is waking up with a lot of pain and a calmer post-op nurse. And Shaka there with all my meds. The doctor comes and tells me it all went well and we will find out the results of if it reached the walls of my bladder later that week and I will have the catheter in for several days. SEVERAL DAYS!!!!! This is almost as horrific to me as the news about the cancerous tumor.
Thanksgiving was 2 days after the surgery, where I will binge-watch episodes of “The Office”, while perusing everyone’s holiday photos on social media. The catheter is making me so nervous. I also worry because my cat, Buster, likes to chew cords and I am a heavy sleeper. I imagine waking up with the catheter all chewed to bits and me having to get another one!!! But Buster behaved and that didn’t happen.
10 days later, the catheter comes out and the doc says they got all of the tumor. It was a pretty aggressive tumor but still contained (which he found unusual). It hadn’t spread to the bladder walls. I ask the doctor, “so I had a cancerous tumor but going forward, what should I tell people or list on forms? Like, what would you say I had?”
“You had cancer”
“Oh”
I wasn’t trying to be stoopid. I was trying NOT to overthink it.
A co-worker of mine says, “what did you think you had? Cancer with a “K”?
I guess I kind of did.
In the new year (this year), I have to go through the treatments. They insert a catheter into the bladder to administer the medicine. The first nurse (whom I adore), says, your urethra is easy to find. This shouldn’t hurt. Though I love this nurse, I realize she is a LIAR! It hurt so badly. I will say, that was the last time my urethra was easy to find cause I tense that shit up from the pain, every subsequent appt. The next 5 treatments have varied results. Crying, calming meditation, calming medication, me yelling OW OW OW! I must have a mark by name that I am difficult but it might also be that I announce it if I get a new nurse. Finally the 6 weeks are up.
In my naiveté, I assume the pumpkin bread I made them to apologize for my behavior was all I would need to part ways.
But the doctor informs me (and maybe he had before and I hadn’t realized it), I will need a regular cystoscopy every 3-4 months (remember iodine-butt) and then BCG treatments every 3 months and then it moves to every 6 months (3 sessions only instead of 6) and this will happen for 3 YEARS!!!
I almost cry again. But that same day, I hear the news that a healthy friend of mine who had gotten out of a bad marriage and had found the love of his life and was thriving had been working out, felt weird, went home, felt weirder, called 911 and died on the way to the hospital (I think an undiagnosed heart condition). I mean, tomorrow is not promised to anyone, but DAMN!
So, I turned my idea of feeling sorry for myself into self care and gratitude that I had a doctor who wanted me to get better. And that I was surrounded by so much love and family and friends. And yeah, tomorrow isn’t promised, so I better like today. I better like this moment. Every moment.
So the second round of 3 treatments happens and on the second one, I get a new nurse. I go through my usual, “I am a bad patient, so you will want to make sure I am blah blah blah and yadda yadda yadda…” I see her eyes get big with concern.
I feel her poking around down there and I think, Damn it, she is new at this.
I ask, “have you found the urethra yet?”
And she says, get this, she says, “We are almost done!” WHAT!?!?!?!?!
There was absolutely no pain.
The next and final treatment of that session, I have her again. I wonder if that pain-free session had been a one off.
But nope. Same thing! No pain!
I think, she must be a witch and has put a spell on me to make this easier. Whatever, I will take it!!!!
So with my gratitude and my summer plans, I enjoy my life.
In September, I go back in for another follow up cystoscopy (iodine-butt).
He says, “Hmmmm, there’s a tiny growth there. It’s not anything serious but it wasn’t there before, so I want to remove it.”
I have to go in for ANOTHER surgery. I am happy it’s benign but I am not happy that I have to go through this again.
I have the surgery. It goes well. The first 4 days after, I am pain free and feeling amazing (no at-home catheter this time – YAYAYAYAYAYAYAY!)
Then the 5th day, the pain starts up. OUCH.
In fact, I am just NOW, nearly 6 weeks later, just feeling the pain subsiding.
A few weeks after the surgery, I have a post-op appt with the doc.
He tells me that they biopsied my tiny little growth and it was indeed, CANCER (FUCK! Again!). It was a different kind than the last one. This one is the more aggressive kind (apparently there are various KINDS that get to invade my bladder like some messed-up video game with Bladder Monsters). The doc is shocked since, like with the first one, this growth wasn’t acting like the usual kind of aggressive tumor.
But now I have to start all the treatments again. Like from the beginning.
My first session of 6 starts next Friday.
I am not happy about it. In fact, I have been feeling very uneasy that I don’t know what’s to come, since my poor bladder has been through the ringer already. I write this today and can’t believe it’s only been a year since I got the news of the diagnosis. I had been planning on writing this post for awhile, but that was before the second diagnosis.
On this day, 4 years ago, our kittens came home with us (after they had almost died due to an infection)
That is a good memory of this day. And my sister told me today is the day my teenage niece came home from the hospital 2 years ago after being very sick for like 2 months. So it’s a strange day of highs and lows in my family, I guess.
The other thought I had was that since my tumors (gosh, plural) have not acted or behaved like NORMAL bladder tumors and since these have been caught early and I have a good team, I will take it, that perhaps, I do have Cancer with a K.
Maybe it’s the imitation kind of cancer.
Wish me luck that I get the witch nurse again.
Wow – quite a story! I’m hoping for the best.
Thx, Wil!
I’m so sorry you are going through all this. This is a lot. I love your heart and strength. I am sending you much love and very good thoughts.
Thank you!
You are so brave and strong and vulnerable and incredible!! What a journey…
Aw, thank you!!!!
Love you and love that you shared this. It’s so clear and so heartfelt. Thank you!
Thank you, Penelope!!!!