This morning my youngest daughter, Kaylee (8) managed to push her older sister, Ashley (10) down while attempting to knock a hat off of her head. Chaos ensued. As Jodie escorted them out the front door to school I heaved a big breath and thought to myself, “It’s going to be one of those days…”.
Later, after I settled in at work, Jodie surprised me by emailing a picture of an assignment that Kaylee had done in her class for Martin Luther King’s birthday…
An assignment for Martin Luther King’s birthday given to my youngest daughter, Kaylee (8) in her classroom.
… I immediately got teary eyed ( I blame the hormone therapy ).
Words are powerful, especially those from your 8-year old daughter.
I really like the UCSD Medical Campus on Campus Point Drive in La Jolla, California. It makes seeing my oncologist just a little more palatable. It’s open, airy, and refreshing compared to some other campuses that I’ve set foot on. Today was my fifth appointment with Doctor Stewart. The last time he laid out some potential therapies to treat my prostate cancer. This time I expected some more concrete plans. My wife, Jodie, waited with me in a small familiar exam room. Doctor Stewart was running behind schedule. Living with cancer has made me realize that “late” is subjective. He very well could be comforting another cancer patient in an exam room next door. Thirty minutes later he walked in, right on time.
One thing I like about my oncologist, and UCSD in general, is that a team of doctors work on your case. I’ve mentioned it in prior posts, but UCSD has a standing “Tumor Board” where all of the oncologists meet to discuss the cases for the week. It’s incredibly reassuring. Last week, the Tumor Board discussed my case and refined my treatment plan.
Continue Hormone Therapy
The first decision was to continue with the 2 years of hormone therapy. I wasn’t too surprised as after two months my PSA, or Prostate Specific Antigen level was now within the normal range. I can almost picture hundreds of thousands of emaciated prostate cancer cells, cinching their belts, sitting on their haunches, starving in a dry, barren wasteland. Testosterone? Fresh out, sorry.
I created a chart for my PSA level and will start including it at the bottom of future posts. Keep in mind that PSA measures inflammation, and by extension, indicates cancer. However, after talking to Dr. Stewart, I realized that it doesn’t always measure how much cancer. Dr. Stewart told me that once prostate cancer metastasizes the scale diverges. As an example, he described one patient of his with bad metastasis to the bones who only had a PSA of 7.0. As far as my prior scans indicate, my cancer hasn’t metastasized in such a way, but my PSA was much higher at 103.
Side Effects
To menopausal women everywhere : I feel for you. I haven’t caved in and started fanning myself in public out of pride, but I have been tempted. The hot flashes, particularly at night, are bad. However, in a weird twist, I haven’t slept so soundly or have had such vivid dreams in years. Typically I wake up about four times a night in a sweat, stumble to the bathroom to drain my angry prostate, collapse into bed, and immediately fall back into a deep slumber to catch the latest of what’s playing on “Scott’s Twilight Cinema”. It’s bizarre and Dr. Stewart was more than a little concerned that I wasn’t getting enough sleep. When he asked if I wanted him to prescribe anything I just smiled back and shook my head “no”. I can only assume that my convenient narcolepsy is a result of sheer exhaustion from the hormone therapy as well as a result of my bedtime ritual of yoga, meditation, and prayer.
It’s not all “good” though, hormone therapy will totally mess with your emotions.
Now, I find myself crying for no reason, anywhere, anytime. I’ve never been the stoic emotionless type, but it’s a little ridiculous. To my friends and family, if you ever catch me with tears in my eyes, rest assured I’m likely having a medically induced man-o-pausal melodramatic moment.
And your libido …
Hormone therapy will destroy anything resembling libido. And, ( cough, cough ) it might even cause shrinkage. Now, I don’t make a habit of cupping my balls, but I’m pretty sure that they don’t hang so low or swing to and fro like they used to. Fortunately, I have read that this “condition” is temporary and is a direct result of the hormone therapy. In the meantime, I’ll just have a little extra real estate in my underwear.
And your liver …
Hormone therapy, particularly Zytiga, also messes up your liver function. During the first few weeks of being on the hormone therapy I saw my Bilirubin, ALT (SGPT) and Bi-Carbonate levels rise above normal. Bilirubin and ALT (SGPT ) are used to measure liver function. Bi-carbonate measures carbon dioxide in your blood. Jodie reminded me that when our oldest daughter Ashley was born, the doctor placed her under an artificial lamp to bring down her Bilirubin levels. She suggested that I try to get more sun and start taking walks throughout the day to bring mine down. Her advice seems to have worked because as of my last blood test my liver function has returned to normal.
And, it’s expensive …
Hormone therapy is outrageously expensive. Dr. Stewart initially started me on Firmagon, a monthly shot, to the tune of $3,837.23. The insurance company only covered $3,380.40 of this. I ended up paying $456.83 out-of-pocket. Since switching to Lupron, a shot that lasts three months, the cost has been reduced to $2,978.26. The insurance company covered $2,623.19, leaving me to pay $355.07 out-of-pocket. What a deal, right? Zytiga? Zytiga costs roughly $10,000 per month. I end up paying $10 per month after insurance, discounts, and financial aid.
Chemotherapy is off the table for now
The second decision made by the “Tumor Board” was to not do chemotherapy.
“For you, there is insufficient evidence that the benefits of chemotherapy would outweigh the risks.”, Dr. Stewart told me.
“My youngest daughter is going to be pissed”, I replied.
“How so?”
“She hates my beard. She was hoping chemotherapy would make it fall out.”, I replied.
Honestly, I was more than a little relieved. Chemotherapy works by poisoning the entire body with chemicals. The weaker cancer cells die. The stronger, non-cancer cells eventually recover. Chemotherapy affects all cells – including those belonging to the immune system. The immune system is responsible for fighting off colds, viruses, and most importantly, cancer. As I have spent the last few months attempting to cleanse and strengthen my body to fight my cancer, poisoning it just didn’t seem right. At least not at this point in my treatment. For now that particular arrow will remain in the quiver.
Surgery has been fast tracked
At the end of the month I have a consultation with Dr. Christopher Kane to discuss a radical prostatectomy, or the removal of my prostate.
I’m ready.
Three months ago when Scripps suggested it to me I wasn’t. Now I am. In fact, during my appointment, when Dr.Stewart told me that he wanted to discuss options for the next steps in my treatment, I interrupted him.
“Surgery”, I blurted out. “Even if we don’t get all of the cancer out, it will make me feel better knowing that the biggest source of it is no longer in me.”
“Is that what you would have chosen?”, I asked.
“Yes, if it were me I would choose surgery, too”, he replied.
Re-staging the Cancer
Before surgery Dr. Stewart wants to re-stage my cancer. When I asked why, he told me that cancer is re-staged to determine how it has responded to treatment or, to determine how much it has metastasized. Within the next few weeks I’m to undergo yet another CT Scan of my abdomen, chest, and pelvic region as well as another MRI of my prostate. The scans will act as a “map” for the surgeon during surgery. They might also show “scarring”, or places on my bones and tissue where the cancer has receded from as a result of the hormone therapy.
This will be my 3rd MRI and 3rd CT Scan in less than six months. I really need to ask if they have a rewards program.
Coffee enemas and other alternatives
Abruptly, Dr. Stewart turned to Jodie and asked, “So, what are you not letting him eat now?”
Ouch. I must have told him about the Thanksgiving Tofurkey.
I quickly butted in.
“The thing is, doctor, we’ve read a lot of articles on how a plant-based diet can be a good complementary treatment for cancer.”, I replied.
“Look, I just want to make sure that you’re not making yourself miserable. You should eat whatever makes you happy. There’s not a lot of evidence that a plant-based diet helps…”, he said.
I quickly glanced at Jodie, knowing that she was thinking exactly what I was thinking.
“We’ve both read a lot of books and studies that say that it does help. I’ve even read that cancer hates ginger and have started adding it to my tea.”, I said.
Doctor Stewart smiled.
“I add ginger to my tea, too…”. He started.
“…and you don’t have cancer!”, I joked.
“…the thing is, if you conduct a study enough times, chances are you’ll eventually get the results that you are looking for.”, he said, adding, “We’ve had at least a couple of patients that have refused treatments. One of them ended up at a clinic in Mexico getting coffee enemas.”
“Doctor Stewart”, I replied, “I told you from day one that I would do whatever you recommend. I realize that it is my best chance at being cured. However, Jodie and I are having a lot of fun with our plant-based diet. It’s delicious and I’m fortunate to have a wife that is a really good cook.”
“Okay, sounds good Just tell me if you start taking Saint John’s Wort or something crazy…”, he said.
Another DNA Test
Before we parted ways, Dr. Stewart brought up the results from my DNA testing.
“I don’t trust the results and want to send in another sample of your blood.”, he said.
Looking down at the bandage wrapped around my right arm I replied, “I had a blood draw this morning but I still have my left arm. Why don’t you trust the results? What are you looking for?”, I asked.
“Your last blood draw didn’t show any mutations and, given your family history and that the lab that we used took way too long with the results, I want to make sure that they are accurate.”, he said, “It will probably cost another $100.”
Sigh. What’s another hundred bucks.
To put it in perspective the grand total billed to our insurance company for my cancer treatment for 2019 was $75,857.70, and that does not even include the cost of medications. Shocking, right?
After shaking hands and parting ways I walked over to Moore’s Cancer Society to have a small vial filled with my blood. As I sat in the waiting room I couldn’t help but notice another lady my age, bald, wrapped in warm towels, slumped in a chair. I wanted to go over and talk to her, to compare war stories, to comfort her, but before I could muster the courage I was called in to have my blood drawn. When I was done, she was gone.
Having a Personal Chef Helps
I think what Doctor Stewart didn’t realize is that I have an excellent personal chef. There was definitely a learning curve. For the first few weeks of my transition to a plant-based diet I thought I’d be doomed to salads for the rest of my life. Fortunately, Jodie stepped up to the plate and I greatly appreciate it. It takes a lot of effort, too. She needs to shop for fresh produce at least twice a week. Now our freezer is mostly empty and our vegetable drawer is spilling out into the rest of the fridge.
Doctor Stewart is right. I shouldn’t put too much faith in my new diet, but it makes me feel better knowing that I am doing everything I can to beat my cancer.
I’ve yet to run across a plumber or electrician that, when asked, “Do you do drywall?” responds with, “Why, yes! I love drywall! No problem!” Coincidentally, I’ve repaired more holes than there are windows in my house. At least when I get tired of software development I’ll have new skills to transition into.
Jodie was enthusiastic when I exited the bathroom a couple of weeks ago.
“Hey, that was a good pee! It sounded like it was coming out fast!”, she said.
“Uh, thanks. I’ve been feeling a lot better…”, I replied.
I was inclined to give her a fist bump, but quickly withdrew when I realized I hadn’t yet washed my hands. Honestly, I don’t know if this is a new high in our relationship, or a new low.
The day after our rendezvous I received the first of my bi-weekly PSA tests since starting hormone therapy. It was 10.70. To put in perspective, the last time I had my PSA measured was on Halloween, and it came back at 103. As of my appointment with my oncologist earlier this week, my score was 3.85. PSA scores under 4 are typically considered “normal”. The hormone therapy is working, at least for now ( more on that in a bit ).
This week I had my third appointment with my oncologist, Dr. Stewart.
Since my last appointment I had a full-body MRI as part of a research study. I was eagerly awaiting the results of this as well as the results of the genetic testing performed on my biopsy. As with my last two appointments, Jodie and my mom joined me in a small exam room.
The MRI results showed no more metastasis other than the sole lymph node that “lit up” in my prior scans. The good news is that the lymph node had actually shrunk from 18mm to 11mm. Normal is less than 10mm. Awesome! More evidence that the hormone therapy is working.
So what is a lymph node? Lymph nodes collect fluid, waste material, and other things (like viruses and bacteria) that are in the body tissues, outside the bloodstream. There are about 600 lymph nodes in the human body. They are spread throughout our body and interconnected by a series of lymphatic vessels. If cancer metastasizes to a nearby lymph node, it can traverse the lymphatic vessels like a highway and spread elsewhere.
My genetic screening results are still not in. There is only one prostate biopsy, and three different labs have been vying for it. Everyone wants a piece of me. The genetic screening lab, being last in queue, is still waiting. Dr. Stewart did however, tell me that there were no tumors detected in the blood of my biopsy.
Then we started discussing my future treatment.
My prostate cancer, due to it having spread to a lymph node, is an early Stage 4. This usually means treatable, but not curable. Dr. Stewart told me that he believes that there is a tiny chance that he might be able to cure me. In my prior appointments he told me that due to my age and general good health that he wants to be very aggressive in treating my cancer. At this appointment he was more specific as to what those treatments might be.
The thing about cancer treatments is that they have to be carefully orchestrated. Some treatments can only be performed once. Others can adversely affect future treatments. A friend of mine who is also fighting prostate cancer referred to treatments as arrows in a quiver. You only have so many arrows to shoot, so make each one count.
My treatment is to span roughly 2 years. During that time I will continue hormone therapy.
Hormone therapy, as I have mentioned in prior posts, starves the prostate cancer of testosterone which prevents it from metastasizing. Hormone therapy is also referred to as “chemical castration” as it blocks the production of testosterone in the ( cough cough ) testicles. Hormone therapy works well, but after a couple years the prostate cancer can start to adapt and either becomes more adept at slurping minute amounts of testosterone or, starts producing it on its own. At this point the cancer is referred to as Castration Resistant Prostate Cancer (CRPC). Hormone therapy is not entirely a single-shot “arrow”, but it’s close. It’s performed through a variety of medications and when one medication fails, another might still work.
Three months in I will start Chemotherapy.
The chemotherapy will be performed in 6 cycles over 18 weeks using a medication called Docetaxel which, from what I have been told, is generally well tolerated. While undergoing chemotherapy my hormone therapy might be reduced by eliminating Zytiga, which is rough on the liver. Chemotherapy is a systemic treatment in that it affects the entire body. It is administered through the bloodstream and kills cells that are undergoing mitosis, or cell division. Cancer cells tend to divide much faster than normal cells, so they are the most susceptible to the treatment. That’s not to say that healthy cells aren’t affected as well. Hair cells, among others, divide quickly as well.
“So am I going to lose my hair?”, I asked.
“You will only lose the hair you want to keep.”, Dr. Stewart replied with just the hint of a smile.
“Seriously?”. I replied, chuckling.
Humor, I imagine, is a fine line for medical professionals when dealing with cancer patients. I am fortunate that Dr. Stewart knows how to walk that line with skill. The truth be told, most men can pull off bald heads; no one can pull off the lack of eyebrows or eyelashes. That’s not to say my daughter Kaylee, isn’t looking forward to it. Nightly, I get asked the same question from her …
“Dad?”
“Yes?”, I replied.
“Are you going to have chemotherapy?”
“More than likely.”, I replied.
“Yay!”
“Why are you so excited?”, I asked.
“Because I don’t like your scratchy beard!”
Chemotherapy typically becomes less effective the more it is used. Similar to hormone therapy, the cancer cells adapt to it. However, like hormone therapy, chemotherapy is not necessarily a single-shot “arrow” either, as there are a variety of different medications that can be used.
After chemotherapy Dr. Stewart plans to run additional CT Scans on me to see how my prostate cancer has responded to the treatments. The CT scans will also prepare the surgeon for yup, you guessed it …
Six months into my treatment I will have my prostate removed through a radical prostatectomy.
Originally, Dr. Stewart was torn between surgery or radiation therapy. I asked him why and he told me that the “standard of care” dictates that surgery is typically not recommended for prostate cancer that has metastasized to a lymph node if the lymph node has exceeded 20mm. If you remember from earlier, my lymph node at its worst was on the cusp at 18mm.
For now Dr. Stewart has chosen to leave the radiation therapy “arrow” in the quiver and I agree, wholeheartedly. If radiation therapy is performed prior to surgery it can make surgery more complicated or not possible because of scar tissue/tissue damage. Radiation therapy is also typically a single-shot “arrow”; it can also be performed only once on a particular area. Leaving it in the quiver preserves a very effective treatment if the other treatments fail.
I have an appointment scheduled with a urological surgeon early next year to discuss what, exactly, surgery entails. Until then I’ll leave you with two words : incontinence and impotence. In a weird twist of irony, my kids will be carrying a diaper bag for me for once. Fortunately, from what I have read, both are usually temporary conditions.
If I seem a little cavalier about having my prostate removed, I have my reasons. From a purely psychological perspective it’d be reassuring to have the “bag of disease” removed from my body even though I am well aware that the cancer has metastasized outside of it. There are also physical issues as well. As I have mentioned in prior posts, my prostate has also caused numerous urination problems ranging from pain, to urgency, to a weak stream.
And that, in a nutshell, is my treatment plan. Piece of cake, right?
But that’s not all…
Next, Dr. Stewart had me sit on the exam table and breathe while he probed me with his stethoscope. He then he had me pull up my shirt and lay down while he palpated my abdomen.
“Your hands are freeeeezing”, I yelped.
“It’s the alcohol .”, he replied.
“Uh, you drink at work?”, I asked.
He just laughed at me. I laughed back, confused.
“Hand sanitizer!”, Jodie added.
“Oh…”, I said, sheepishly. Okay, so maybe the hormone therapy is dulling my mind a little.
“Originally, I started you on Degarelix, or Firmagon, because I was concerned about a testosterone spike making your symptoms worse. Now, I want to start you on Leuprolide, or Lupron. It’s administered as a single shot every three months instead of monthly.”, Dr. Stewart told me.
“And where is this shot administered?”, I asked.
Before Dr. Stewart could answer, his nurse materialized in the doorway, blocking my escape route.
“Drop your pants a little and put your hands on the exam table.”, the nurse told me.
“Ohhhhhhh….”, I replied.
“Uh, I’ll talk to you guys later…”, my mom said as she squeezed past the nurse and made a hasty escape out the door.
“And, you’re staying for this?”, I asked Jodie.
“Sure!”, Jodie replied, a little too enthusiastically.
I shot a glance over my shoulder at the nurse, who was now wearing what looked like a hazmat suit and gloves. She held a transparent bag marked with a biohazard symbol that contained a syringe full of what I imagined, was Lupron.
“Wow! I honestly didn’t think it was possible to make syringes where the needle is bigger than the barrel.”, I told the nurse, “Be gentle, or I’ll kick like a mule.”
The nurse was fantastic. I barely felt a thing, well, not until later on that day anyway.
“Have you ever been tempted to slap on a cute pink heart-shaped bandaid back there while no one was looking.”, I asked the nurse while pulling up my pants, “That’s what I’d do…”
“No, but maybe next time!”, she replied with a smile.
By the time I got home it felt like someone had kicked me in the ass where the shot was administered. Oh, well. It’s still far better than two shots to the belly.
So, that’s all for this year, folks!
2020 is going to be rough year for me, and to be honest, I’m scared. I’ve been feeling the best I have felt in months, and now with these new upcoming treatments, I am worried about relapsing. Fortunately, I have my family and friends. Their love and support have helped me more than they could possibly imagine. Thank you, it’s the best gift I could receive.
Take care. Stay healthy. Live life. And have a happy holidays!
The research study that I volunteered for required a full-body MRI. Instead of injecting me with a contrast dye, the technician encased my chest in a rigid plastic vest and my head in a two-piece vinyl helmet. After handing me a couple earplugs ( no music this time) the adventure began! Within 15 minutes I had an itch on my nose. By 30 minutes I had to pee … badly. It was a long hour. Towards the end of the scan I started recognizing the different sequences of the equipment by the noises it made. Go here for more.
One of the easiest yet hardest things you can do to improve your health is to change your diet. This seemingly innocuous statement deals a harsh blow on Thanksgiving Day.
“No, sh**”, I thought to myself as Jodie served me a plate of Tofurky alongside a tiny slice of pumpkin pie.
Sigh.
For the longest time I strongly believed that diet didn’t matter
This sage advice was given to me during my first year of college by a senior who, from the perspective of a lowly freshman, was the wisest person in the world.
“Trust me, Scott…”, he said while tearing chunks out of a McDonald’s Big Mac, “…it doesn’t matter what you eat as long as you burn the calories.”
“You can eat a dozen of these things,” he said while waving the burger at me, “and as long as you exercise you’ll be fine!”
540 calories and 28 grams pf fat of “frankenfood” deliciousness.
Blessed with a fast metabolism ( and an exercise routine ) this advice carried me for a very long time. I stayed away from fast food, but for the most part I ate pretty much whatever I wanted. After being diagnosed with Prostatitis I did some research on the web and began to realize that some foods that I was eating might be making the inflammation and subsequent urinary problems worse. I started a rudimentary “elimination diet”, and cut out spicy foods, red meat, caffeine, alcohol, and an assortment of other foods from my diet.
While I was experimenting with my elimination diet, my wife, a real estate agent, discovered a book titled, “How Not to Die” on the bedroom nightstand of a house she was showing to some clients. After laughing at the morbid title, she did a quick search on Amazon and realized that the book was a cleverly named and highly rated guide on how to prevent disease through a plant-based diet. She bought a copy and quickly read it from cover-to-cover. Since finishing “How Not to Die” Jodie has also read “Anti-Cancer: A New Way of Life”, “Radical Remissions”, “The China Study”, and watched the documentary “Forks Over Knives”.
Thoroughly convinced and armed with the empirical evidence that a plant-based diet is a possible treatment against cancer, my wife volunteered to be my own personal nutritionist and chef in my battle against prostate cancer.
In addition to feeding me more fruits, vegetables, and whole grains she also wanted to :
Greatly reduce my refined sugar consumption to starve my cancer cells.
Eliminate processed grains due to their high sugar content.
Only buy organic foods to eliminate pesticides.
Eliminate dairy entirely as it has been shown to increase prostate cancer risk.
Eliminate meat, red meat in particular, due to the hormones and antibiotics used in its production.
My wife isn’t alone. Since being diagnosed with prostate cancer I have talked to a handful of other prostate cancer patients and all of them highly recommended a vegetarian or vegan diet to me. It’s not just a “cancer thing”, either. I have several friends who have changed their diets as well in an effort to reduce inflammation and they have had a lot of success as well.
The odd thing is, when I talk to medical doctors, or even nurses, the majority of the time they are undecided. It turns out there just isn’t enough quantifiable large scale studies on how a plant-based diet affects cancer. Doctors work on facts – not theory. It’s not that they don’t believe that such a diet doesn’t work, there just isn’t enough evidence to back it up.
Convincing studies would be huge, long term, expensive projects. They would be complicated, too, as there are so many meals a day and so many variations and levels of commitment. Some people are strictly vegan, some are pescatarian, others are vegetarian or flexitarian. The results could be devastating to a wide variety of food producers, too. Can you imagine the impact on the dairy and meat industries if such a study determined, without a doubt, that their products cause cancer? I hate being a conspiracy theorist but I feel it would be highly unlikely that the government would ever spearhead such a study and risk the fallout. As diet is likely not patentable I doubt any private industries would pony up the cash, either.
I am not a vegetarian or vegan in the strictest sense. I love animals. They taste delicious. I just choose not to eat them for health reasons.
Although I try to stick to a plant-based diet, I still eat fish about once a week. Sushi is Jodie and my comfort food ( Kaylee is no slouch, either ). In an odd twist, while we were staying in Mission Beach during the summer we had a craving for it and found a nearby restaurant called, “Now Sushi”. While looking through the menu Jodie noticed that all of the seafood was listed in quotation marks and quickly realized that the restaurant only served Vegan Sushi! We didn’t mention it to the kids, and they didn’t notice. And the food? It was great!
It’s getting easier and easier to find restaurants that serve delicious plant-based meals. A couple of weeks ago my mom and stepfather took Jodie, my daughters, my brother, Todd, and I to a vegan restaurant ( yes, on purpose this time ) called “Peace Pies”. It was an eccentric little hole-in-the-wall off of Voltaire Street in Point Loma. The front counter was overloaded with stacks upon stacks of little plastic containers with clever names inked on them. Each container held what we thought looked like marijuana? We ordered a variety of dishes: wraps, pasta, and quesadillas . After our meal, everyone agreed that the food, although entirely plant-based, was very good. And the marijuana? It turned out to be Kale Chips, and delicious at that!
While the girls and I were trying to decide on a vegan dessert ( Chocolate, it turns out, can be vegan, too, if not low-sugar ) my brother and Jodie had a short conversation.
“So, did you like it?”, Jodie asked.
“Yeah, it was okay. But, once Scott gets better he can go back to his old diet.”, my brother replied.
“He could, but I don’t think he will want to.”, Jodie told him.
Jodie is right. Following a whole food, plant-based diet is not as bad as you would think. The food is actually quite delicious. There are a lot of good recipes out there, and fortunately, Jodie is really good at making them. And, if the diet helps keep my cancer in check, why would I ever risk stopping?
Sometimes you miss certain meals though – even the simple sandwich.
You can imagine how excited I was when Jodie messaged this picture to me at work the other day :
Our conversation went like this …
“I’m perfecting the Vegan Sandwich. This one is on organic sprouted grain bread. It has hummus, avocado, micro-greens, lentils, spinach, cucumber, tomato, and red onion”, she wrote.
“That looks delicious! Can you take some better pictures so I can share it on my blog?”, I replied.
“…I ate it.”
“You seriously ate my blog post?”
“It was my lunch…”
Fortunately, she’s since gathered more ingredients and made me my own sandwich. And yes, it tastes delicious.
Last but not least, my hormone therapy appears to be working, although I won’t know for sure until I get the results back from my monthly PSA test. From a symptomatic perspective using the bathroom has become easier. Urination is no longer restricted or painful, and I can actually stand at the urinal again ( ladies, this is BIG, trust me ). Admittedly, I wouldn’t impress the smallest of fire departments with my flow, but it’s a huge relief to me. In retrospect it’s a little unnerving how slowly and stealthily the prostate cancer symptoms crept up over time. Like a lobster in a pot of boiling water, sometimes I feel like I never knew the temperature was ratcheting upward. So far the only downsides are a lack of energy in the evenings and, yes, hot flashes. But both are a small price to pay for the benefits. I have an upcoming appointment with my oncologist, Dr. Tyler Stewart in the next couple of weeks. I’ll be sure to keep everyone updated with the latest on my privates.
In the meantime, as we roll into the holidays I’d like to wish everyone a Merry Christmas and a Happy Hanukkah! Thank you for all of your support. It helps a lot!
Take care. Stay healthy. Live life.
-Scott
P.S. If you want Jodie to start sharing some of her recipes, so do I. Send me a message and I’ll see if I can twist her arm.
My oncologist, Dr. Stewart, encouraged me to enroll in a research study to learn how to improve MRIs ( Magnetic Resonance Imaging ) for the detection of metastatic cancer without using an injected contrast dye. The study is funded by the Department of Defense (DoD) and the Prostate Cancer Foundation (PCF).
So, I finally admitted defeat and bought one of these beauties.
Sexy, right? Amazon sells a model with a larger pill capacity but this one screams “minimalist and sleek” to me. Why a pill box? Because my medications keep increasing in number and complexity. As food can have a big effect on how a medication is absorbed in your body, it’s important to take some medications based around meals. The most logical way to do this is to organize pills by mealtime in cute, colorful, OCD-inducing plastic boxes.
This week is Thanksgiving.
Thanksgiving, as everyone knows, is a time to reconnect with family and friends by filling your plate with food and then sitting down at the dinner table to compare illnesses.
Up until this year I’ve been the underdog in these conversations. However, this year is different! This year I get to slap my new pill box down and insert myself into the conversation with gusto! Maybe I’ll even raise the ante a bit and sneak a couple of placebo pills in as well!
Honestly, it’s a little disconcerting. In less than 6 months I’ve gone from no medications at all to enough to require, well, a pill organizer. My friend, Missy pointed out that it’s not forever. Retired from the Navy she used deployments as an analogy. She told me, “Deployments take two years. They suck, but in the end you get to come home and return to your normal life.” Coincidentally, my friend Pat who also has prostate cancer just ended his “deployment” and is doing great after concluding two years of treatments.
So, what goes into my pillbox?
The latest medication is Zytiga. Zytiga is used to treat aggressive prostate cancer, like mine. It along with Prednisone and the Firmagon shots that I started last week, complete the hormone therapy cocktail prescribed to me by my oncologist, Dr. Stewart. Dr. Stewart told me that Zytiga stops my adrenal glands from producing testosterone. If you remember from my prior post, testosterone feeds prostate cancer. Without testosterone the cancer should stop metastasizing and shrink. Zytiga is just another way of crimping the fuel line. One of the side effects of Zytiga is that it lowers the amount of cortisol produced by the adrenal glands. Cortisol, known as the “stress hormone” helps regulate blood pressure, metabolism, and stress levels. Sounds important, right? The Prednisone is a synthetic cortisol to replace what is lost when taking Zytiga. I also need to take vitamin supplements such as calcium to maintain bone density and prevent muscle loss. Zytiga can also cause high blood pressure and liver problems. While taking it I will need to monitor my blood pressure daily and have blood drawn every two weeks to check my liver function.
Oh, and Zytiga costs $10,000 per month.
Yes, the zeros are in the right place. That’s roughly $160 per pill. I take two pills per night. My prostate cancer cells apparently have very very exquisite tastes. In retrospect maybe I should have bought a pill box with a padlock…
Zytiga isn’t even a cure for prostate cancer – it’s a treatment.
I wish I could peg the blame solely on some greedy pharmaceutical executive somewhere pricing these things. In reality, I know that the truth is a lot more complicated than that. Zytiga, being approved in 2011, is a relatively new medication. Newer medications can take up to a decade and well over a billion dollars to get approved. Of all potential candidates only 10% are ever approved by the Food and Drug Administration ( FDA ) for the market. That’s a lot of money and a lot of risk.
Thankfully, my health insurance helps a lot with the costs. I now understand why insurance rates increase annually as treatments like this skyrocket in price. No, it’s not okay and it’s definitely not sustainable but I’m at a loss how to fix the problem.
Fortunately, there are people smarter than me working on solutions.
Last night after I choked down my jagged little pills Jodie showed me a study that she had found with an innovative solution for cutting costs. Earlier I mentioned how some medications are absorbed differently based upon what they are taken with. Zytiga, for this reason, is taken on an empty stomach. The study found that if Zytiga were instead taken with food, the dosage could be halved and have the same overall effect. At $160 per pill the study estimated that the savings per patient were in the hundreds of thousands of dollars. Although the study hasn’t been clinically approved it is refreshing and a step in the right direction.
Take care. Stay healthy. Live life. Have a Happy Thanksgiving!
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