(Current Updates Below Introduction)
When I received this card January 24 2020, it seemed like the perfect graphic to launch this page.
Yes. Cancer absolutely 1000% sucks. I read that “you don’t have cancer, until you do.” And boy, is that true. One minute, you’re living your everyday life, then overnight, the diagnosis forever splits it into Before Cancer and Treatment/Fear of Recurrence Cancer time blocks. It changes everything.
For new visitors, I am way too close to 60 years old and I have stage 3 endometrial cancer. My lymph nodes tested in December were clean, but it’s a grade 3 (aggressive) cancer so now it’s necessary to endure six chemo treatments and 6 weeks of radiation treatments spread out over 6 months.
Sometimes I write a full post about cancer, but I created this page for frequent, shorter updates. Questions? Email me at: email@example.com
Dennis and I met for the first time with the nephrologist at 8:30 this morning. It was an interesting meeting. When my chemo doctor had first contacted him, he theorized that it might possibly be some type of ureteral obstruction that had caused my creatinine clearance levels to go from a healthy 77% to 17%. When he saw my CT scan, however, it showed that there was no obstruction. He also wondered if Carboplatin (the chemo drug I have now received 3 times) played a role. It has been known to affect the kidneys. But when he saw the medications that I am on for high blood pressure and diabetes, the diagnosis began to take shape.
I take 2000 mgs/day of Metformin to control blood sugar levels. The kidneys have to work harder to remove it from my system. I also take Losartan and Triamterene which are both diuretics (works in the kidneys to increase urine to remove extra salt and water.) So, combining the effects of Carboplatin with drugs that are not kidney-friendly along with chronic diarrhea from the radiation causing dehydration just became a cumulative burden…or so we think. The first step is to stop taking those drugs for a month and get lab work done in two weeks. I will monitor my blood pressure daily to see if there is a marked increase. We will meet with him in a month to see if my kidney function numbers have improved. He did specifically say that this is reversible which was a huge relief. I may have to stop taking the drugs permanently, or try new ones, it is hard to say.
I don’t currently know the magic number that will allow my chemo doctor to comfortably resume my treatment, but if it doesn’t get there, we’ll have to weigh the pros and cons of finishing my last three rounds. But baby steps. At least, there is a plan now to get my kidneys back on track.
It’s 8:13 am and I am hitting the keys. I feel a strong desire to get what I have to share down on digital paper.
My virtual meeting with my medical oncologist was yesterday. He oversees my chemotherapy. His assessment is always based on a blood test taken the previous day. If those numbers look good, I’m a go for my next round.
We said our hellos and he focused on the lab results. He started by saying that I was anemic and that I was probably feeling tired. This news didn’t surprise me since I haven’t eaten well in weeks. Side effects of radiation (diarrhea) forced me to adhere to a low-residue diet – which is not always healthy. No fruit (except bananas) no raw veggies, nuts, salads, milk, multi-grain breads etc. I had lost 11 pounds over the previous six weeks.
Then he hit us with the completely unexpected news. My creatinine clearance level (kidney function) was extremely low. He said he was going to have to send me to a kidney specialist and literally pulled out his phone and texted a colleague. The colleague immediately called him and they briefly discussed my case as we virtually sat there, watching. It was unusual, but I appreciated the swift action.
He said he wanted me to come in and get fluids “stat” both that afternoon and today. He wanted a CT scan of my abdomen immediately. We hopped in the car and one hour after that meeting began, my port was reopened and I was receiving one liter of saline solution. It took an hour.
The CT scan was not as easy. In fact, it didn’t happen. They were aware of the “stat” status, but by that time of day, it was impossible to fit in. As I had stood in line with the order, I had read it. I was dumbfounded. It said that I am in kidney failure. Kidney FAILURE?? My numbers 10 weeks ago were in the normal levels.
With no scan time available, we went home and I soon received a phone call. It was central scheduling and they found an opening on Friday. The CT scan would have to wait 48 hours.
I have an overwhelming number of questions. How soon until I can get in to see the specialist? Is this diagnosis permanent? Will this lead to dialysis? And here’s a question: What happened?
Dennis (my husband) reassured me that if I was in a life-threatening situation, they would hospitalize me. I tried to stay away from Google, but I couldn’t. I had to look up symptoms of kidney failure. I had some that were listed (weakness, fatigue) but others (swelling around ankles, confusion) not at all. There was one listed symptom, however, that concerned me. Nausea. I rarely feel it. Three rounds of chemo hadn’t make me sick. But I have had multiple moments of nausea over the last three weeks. Enough so, that I made Dennis buy me some ginger ale.
We also hold onto the possibility (however slim) that the test or printout was somehow a false negative or even a typo. We think (hope) this because it all happened so incredibly fast. I thought kidney disease took years to reach kidney failure.
Needless to say, my next round of chemo has been put on hold. The last thing my kidneys need to process are strong chemicals in my system. How this will affect my overall treatment, I do not know. I’ll keep updating as I learn more.
(May 27 update)
The two liters of saline solution proved to be a powerful boost. I gained significant energy, the nausea dissipated and I began to eat normal meals again. I weeded a little and cleaned the house. I felt like Wonder Woman.
I was also informed yesterday that the CT scan results showed no cancer. This is excellent news and we can cross cancer off the list as the reason why my kidneys showed major distress. I will be seeing the kidney specialist tomorrow to learn more on that. I’m hoping a blood test will be taken that will show my numbers are on the rise. It’s hard to reconcile “kidney failure” with how well I am feeling.
Yesterday was my last external radiation treatment. I walked into the treatment room and there were smiles all around.
“It’s your last day!” Carrie exclaimed as they had me lie down and cover me with the sheets.
“I feel like it’s graduation day” I responded, laughing.
“She needs a quarter roll on your side” Carrie said to Stacy who quickly adjusted my position. They have to line up the tattoos with the equipment exactly.
Suddenly, Prince’s “When Doves Cry” started on IHeart radio. As they left the room, I found myself smiling, grinning really, under my mask. “This is what it sounds like …when doves cry” I’m practically singing out loud. I had to stop my foot from moving to the beat. I had just watched the Prince tribute on television and the song was fresh in my head.
While the machine rolled around me, I lay there so incredibly grateful that this was my 25th and final time. Radiation had not been kind to me. Daily stomach and intestinal cramping, sometimes severe, left me in bed many afternoons. I hated eating, knowing that I would pay the price even though I followed the low-residue diet.
The song changed to Billy Joel’s Piano Man. I stared at a small, nondescript mark on the corner of the ceiling tile above me. I had looked at it many times wondering how many patients kept their eyes open or kept them closed during treatment and did anyone ever look at that same spot.
When Billy got to “they put bread in my jar and say “man, what are you doing here?”” The machine stopped. Through my peripheral vision, I saw the familiar sight of the therapists’ feet moving closer and it was over. I was done.
As I sat up, they handed me this wonderful “Certificate of Completion” along with their names and congratulatory notes. Not for one second did I think “I’m too old for this or that’s silly.” I LOVED that piece of paper. I EARNED that piece of paper. It proved that I had done the work and that this leg of the journey really was over. Leaving that day was the best damn feeling in the world.
I’m over a week into the new diet (see April 8 post below) to calm my intestines from the radiation and the results are so-so. God, what I would give for some almonds and a cold glass of milk (not necessarily simultaneously.) I’ve lost 4 pounds in a week. When you think you’re going to lose the food you ate prematurely, you tend to avoid eating. After fighting it for days, I finally gave up coffee too (the plan said “go easy” on coffee) and I do notice a change. There is more stabilization. Or, maybe the pros of the diet are finally kicking in. It’s hard to say. Imodium remains a staple.
So that was the backdrop to receiving some good news when I met with the radiation oncologist this week. I will have only five weeks of radiation instead of six. “Yay” I think, but the news is tempered. For this type of cancer, they typically do Radiation Phase One and Radiation Phase Two. Lucky me. Or, they are also called external and internal radiation.
Internal radiation will mean a new doctor and a drive to the main hospital 4 times. It’s about 35 minutes away. On one interesting note, I was able to teleconference with that doctor. We zoomed on Tuesday. It’s a crazy world right now, but this was one, small convenience.
Once Radiation Phase Two starts, I’ll feel like I crossed over into some sci-fi movie where radioactive material, sealed in a source no larger than a pencil dot, is positioned internally next to the targeted area and then removed after several minutes. The procedure will be repeated in three separate visits. It is called brachytherapy. As the doctor mentioned, we are fighting this cancer at a microscopic level. If it’s still there, then it’s too small to see, so they’re going to Chernobyl it; just to be on the safe side.
In the meantime, I’ve just completed round 17 of radiation. Only 8 to go.
I have now been through ten treatments of radiation. It’s been going so well that I haven’t felt the need to write an update. We get up, have breakfast, shower and head over to the medical building and wait in the parking lot for my “green light” text. This is another COVID-19 precaution to prevent anyone from waiting in the waiting room. I then walk through the main doors, get my temperature taken and walk to the radiation department. I receive my treatment (average time about 4-5 minutes) and head home. Then it’s rinse and repeat. It truly had been going well. Until three days ago.
I had been warned that the rays could scatter a bit around my intestines and they have certainly found them. There is irritation. It hasn’t helped that my typical diet includes things like Raisin Bran, almonds, multi-grain breads, crunchy peanut butter etc. During treatment, this is the exact opposite of what I should be eating if one is experiencing intestinal issues. I’ve been given a list of both foods to avoid and eat:
Armed with my new N95 mask my son sent from painting his apartment over a year ago, we went shopping for the item I consider gold right now: Imodium. I was worried whether I would find it. You never know these days what is going to be on the store shelves (I mean, who knows whether there is a correlation between the availability of Imodium and empty toilet paper shelves?) Thankfully, they were well-stocked. I also landed some bananas, applesauce, Crispex cereal (rice and corn), soup and crackers.
I only have a month remaining for radiation, so these sacrifices are temporary. It’s just important to me to share my experience, with all its variables, as it unfolds.
I have to laugh. I just came home from my first radiation treatment and realized that my March 18th post is entirely irrelevant. The machine they used on me that day is not the machine for treatment! I had been worrying about getting claustrophobic for nothing.
First, I want to mention that the large medical plaza now has a COVID-19 desk outside by the main entrance. Manned by a friendly face, the woman was asking questions such as “have you traveled recently?” etc. as people approached. She was busy when I walked up so the security guard asked me “Why are you here?” and I replied “The Cancer Institute” and he waved me through.
Ok. The machine. There is no tube. I still lay down on the same type of thin, hard surface, but this time there are three primary pieces that circulate around you. Two “arms” may periodically change position, but there are frequent stops too. I can see plenty of open space and white tiles in the ceiling at all times. They even have a radio station set to 50’s/60’s oldies which was a nice distraction.
When one of the radiation therapists announced that they were now leaving the room to begin and she didn’t mention how long it would take, I had to ask.
“Will it be 5 minutes? 2 minutes?” I am nothing if not hopeful. Either way, I needed to know in order to gear myself.
“With the initial x-rays and then the treatment, it should be about 10-15 minutes” she replied.
“You can do this” I silently repeated to myself. At that point, I didn’t know what those arms were going to do or how close they would get. I gripped my large rubber ring they gave me to hold onto with both hands and focused on “That Will Be the Day” by Buddy Holly playing somewhere behind me and the green light cut into the ceiling above me.
And then it was over. The radiation therapists reappeared, removed the tape covering my X’s (March 18th post) and using a needle, gave me three new tattoos. One on each hip and one on my abdomen. Now, I really am a badass. And I LOVE this comic strip my son sent:
So now I’ll be there every weekday for six weeks. On Mondays, I will see the doctor afterwards. I can only imagine what visit number 30 will feel like. That’ll be the day.
I had my simulation radiation appointment this week. The goal was to take a scan for my oncologist to use in mapping and measuring precisely where the moving, multiple beams will go during my daily sessions. After meeting with her first, I headed over to the Radiology department.
Two lab technicians requested that I lay down on a long, thin, hard bed after I lowered some of my clothing. They immediately placed a large warm blanket over me. One placed a comfortable brace under my lower legs and they both began to position me into the exact spot they wanted. It was literally an inch to the left, a fraction of an inch to the right etc.
Then they began to mark my hips with giant blue X’s with a paint marker. They covered the X’s with waterproof tape since the marks have to last 2 weeks. At that time, they will create a tiny tattoo at the center of each X which will be the entry angle for the machine to radiate into my pelvic region. (There was one false start. They returned to tighten the position which required moving the X’s once.)
They handed me a medium size rubber ring to hold against my chest as the machine began to move and cover the upper half of my body. My head was now deep in the tube (although if I rolled my eyes back, I could just see outside of the machine.)
The ring is used so there is a place to put your hands, but I also think it’s there so that you have something to grip and focus on as the machine whirs and spins. I’m not claustrophobic, but I’ll admit, that there was a moment where I thought it was taking too long and I got anxious. I was actually never told how long it would take; my guess is that it was 3 minutes or so. That was enough for me. I’m a little nervous to find out how long the daily treatment will be. The next step is to return in about 10 days for a trial run of the mapping. I begin really radiating after that.
There was another interesting take-away from my meeting with her unrelated to radiation. I asked her whether it was advisable for me to cancel a dental cleaning later in the week because of COVID-19. I had gone back and forth on it. There were no cases in our county and aside from the waiting room, it is a very sterile environment. And she made an interesting point. It wasn’t so much about that day or that appt., but rather if I catch it anywhere then it would delay my radiation for weeks and weeks thus diminishing the effectiveness of my entire 6-month treatment schedule. Treatments are staged and timed in a very specific way.
I’ve already been cautious, but this remark upped my personal safety protocols even further. It’s ironic that radiation treatments will take me into the hospital every single day – a potentially high risk venture. But I’ll bring my sanitizer to use after every session and trust that the hospital is using every protocol to keep us safe; especially those with compromised immune systems.
Chemo again in four days. How can that be? My energy level is finally rising, I’m sleeping well and the aches are gone.
In fact, I even had enough energy this week to sort through and make calls on various doctor, lab and treatment day bills. Some are residual from the end of last year and some are current. My favorite this week was the medical group that failed to submit “tumor analysis” in their line items to my insurance company and just decided to bill me $1000.00 directly instead. It will be reviewed. On the plus side, one medical group had requested prepayment for a service last November, but ultimately overcharged by $688.00. I just got that refunded. Thankfully, my deductible has been met, but some bills were in the pipeline before that was official so I have to figure out who pays them and/or how do I get reimbursed. Insurance is a lesson in patience, but I am grateful I have it.
The great news is that my son and his wife are flying in today for a visit. So, my four remaining “good” days will be filled with good family time and good laughs. I’ll carry that into treatment day as they leave that morning.
After my next chemo round, I go into a month-long break to have the drugs leave my system in order to prepare for radiation. I’ll start that leg of the journey at the beginning of April. I have an intriguing appointment in the middle of March where I will lay on a table, get scanned, get tiny tattoos on my hips and get microscopically measured in the pelvic region to calculate the path of the radiation pulses. More on that when it happens. I’ll receive radiation five days a week for six weeks. Then, it’s back to chemo for another nine-week cycle.
And on a completely random note, it was such a nice surprise to recently receive a lipstick sampler in the mail from a close friend. Since I always try to post a photo, here’s one where I’m wearing “Red Heels” by Guerlain. (This is not a paid advertisement.)
Win! I got out the garden tools today and successfully planted this Bougainvillea. I needed to remove the previous plant, pull some deep-rooted, scary-looking weeds surrounding it, remove the store’s wood trellis and ties, plant and then tie it to the metal trellis.
Ok. I get it. That doesn’t exactly sound like an impressive four hour project, but I was winded in 20 minutes. My last chemo treatment was 12 days ago and my reserves are still low. I wake up thinking I can do three projects then I curb it back. Everyday. It’s the nature of the beast.
But the point is, that between treatments, life goes on. We went out to dinner last night with some friends. Tomorrow I have to spend some time cleaning. I just refuse to let this horrid disease dictate what I can and can’t do. And maybe most importantly, my visible signs of productivity make me feel good and feeling good helps me heal faster. I love looking at this new plant. It’s a good day.
Last Wednesday I had my second chemo treatment. I had a much lower anxiety level going in because the first treatment day had gone relatively well; primarily due to the help of pre-medications including anti-nausea drugs and steroids (to prevent allergic reactions). They even do a 30 minute, slower “test” drip of the drug to ensure tolerance. The protocol to avoid side effects is impressive.
Having been through Round 1, I felt confident enough to invite a friend to come sit with me for an hour or so while Dennis went and got some lunch. It would be a nice break for him.
So the day moved forward, the pre-meds were done and the nurse returned with the Taxol (Paclitaxel) bag just after my friend arrived and Dennis said goodbye.
There was no need to test this time. She hung the bag and I continued to chat. In less than 5 minutes, however, my stomach felt queasy. And in an instant, I felt faint and said “I think something’s wrong. I think I’m going to pass out.” I started to see stars. Literally.
My friend jumped up to grab a nurse and suddenly there were several nurses surrounding me. Apparently, my face was beet red. I was having an allergic reaction. I was short of breath. They immediately stopped the drug and gave me an emergency steroid in my IV while a nurse was coaxing me to “take deep, slow breaths” which I could barely do.
I was much better within minutes. The incident was short-lived and is not that uncommon. Apparently, this can happen with the second dose as the body has been exposed or “sensitized” to it. It’s similar to food allergies. What they didn’t know, however (and why would they?) was that having an allergic reaction had become a phobia for me, ever since I had first heard about it. It was my primary concern before the first round. I was on uber high alert as the drug entered my system that first day. I think my fear touches on how fast you can deteriorate; how seconds count.
My cognitive side understood that the nurses are right there and would counteract the reaction immediately, but my emotional side couldn’t get over that wall of logic. I was kind of half-hanging on it, shaky and unsure.
They returned to start the treatment again. They call it “re-challenging.” I wasn’t sure I was up for re-challenging. I asked if there was any way we could return to the 30 minute “test” drip to ease into the process again. I suspect that request is unusual, but to their credit, they did agree to do it. I appreciated that so much.
What’s ahead? I still have four more treatments to go. And a wall I’m trying to get over.
I guess it’s time to tell the rest of the hair story. On the day that I took that photo of my thinning hair, it got even worse by nightfall. And still, I wasn’t sure about shaving it. I wasn’t against it per say, but I wasn’t embracing it either. I think that I had some romantic notion that it should fall out naturally; that I should respect the integrity of the process and see where it goes (besides the floor.)
But when I went to brush my teeth that night, I glanced in the mirror and was horrified. The hair was so straggly and the bald spot had grown. I thought that I looked like a 102-year-old woman.
I woke the next morning, brewed my coffee and began watching the news. Then suddenly, I stood up, went to get a pair of scissors and began to cut the remaining hair short. This was not a conscious plan. My brain had just caught up to reality that it was time.
I was in the middle of cutting when Dennis walked in.
“Oh.” He said. “Is the next step shaving? Do you want me to get my shaver out?”
I nodded yes. Suddenly, I wanted it gone. All of it.
Dennis said it was weird for him to shave my head. In fact, he did it in phases with the numbered combs they offer in the kit. First, it was an 1/8 of an inch, and then it was 1/16 of an inch.
I got in the shower and felt my head. It was prickly. Rough. Completely foreign. When I was done, I wrapped my head in a towel by habit and had to laugh. Those days are over for a while. I pulled it off and stared in the mirror. There was no going back. “So” I thought. “I could look at myself and see a victim, or I could look at myself and feel like I’m Sigourney Weaver in Alien 3.
I’m going to go with what’s behind door #2. Who doesn’t want to be a kick-ass heroine? Here are my various looks now:
My hair is on its last legs. I’ve been calling it dead hair walking since the day after chemo. The first photo below was taken Friday Jan. 31st. By Monday, Feb. 3rd, small clusters were coming out in the shower. I brushed my hair a few times in the course of that day, and enough hair came out to half-fill my bathroom wastebasket. And yet, it still looked pretty good. I am blessed with a thick head of hair.
By Weds. Feb. 5th, I was losing the battle. It came out in clumps in the shower and my comb continued to take out chunks with every comb-through. I just put my head over a wastebasket and watched the hair cascade into it. My husband Dennis walked in, stood by watching and teared up; not for the hair, but for me.
And it’s not just falling into the basket. I’ll be walking into the kitchen and feel something on my bare arms, like a spider web. I immediately brush it off, then realize it’s just hair falling out on its own and landing on me. I just removed a strand from my keyboard.
I’ve added a current photo. I still have some, but it looks drastically thinner.
I probably need to just shave it at this point, but I’m not quite ready.