Hey everybody, it’s been awhile! In fact it’s been exactly 6 months to the day since my last chemo infusion. Time for a few quick updates.
My cancer is still in remission! I’ve had two CT scans so far (one in May and one in August), and a blood test two weeks ago and things are looking good. I have my next CT scan the beginning of January. This is the new normal for me, periodic monitoring to make sure the cancer isn’t coming back. The blood tests/CT scans still cause some anxiety, but I think I’m getting better at dealing with the anxiety.
I’m doing Movember, but not quite in the traditional sense. I shaved off my recently re-acquired and beloved beard, and am re-growing the beard for the month of November. We have a family photo shoot November 24th, then I’m shaving the beard to a mustache. I didn’t want a mustache in the family photos (sorry Dad, I know it was cool in the 90’s). If you’ve been living under a rock for the past few years, Movember is a movement/organization/event that aims to bring awareness to and raise money for men’s health with a goal of “tackling Prostate Cancer, Testicular Cancer, Mental Health AND Suicide Prevention.” It’s not too late to grow a mustache dudes!
Look at this dude: 6-months in remission and all clean shaven!
I also recently started rock climbing. I joined a local climbing gym, Mesa Rim, with my friends Keegan, Nancy, and Alex. I am not very good and at times it is super frustrating, but I LOVE IT. Like seriously love it a lot. I love it so much I’ve been going 3 times a week, and twice a week I wake up at 5:30 in the morning to hit the climbing gym at 6am with Alex and Keegan!
My first day climbing. Ignore the terrible form, I didn’t know how to use my feet!
I have big goals for this climbing hobby, and those goals include someday climbing in Yosemite.
Six years ago my friend Chris Reynolds and I went backpacking in Yosemite. We backpacked the High Sierra loop near Tuolumne Meadows, and it was wonderful. Near the end we camped at Cathedral Lake, which is at the base of the famous Cathedral Peak that John Muir first climbed in 1869. It’s a stunning place (see below). Our last full day of backpacking was pretty chill and I attempted to summit Cathedral Peak solo, but failed. It’s a fairly intense, dangerous class 4+ hike/climb and I’m glad I turned around.
Cathedral Peak from the shores of Upper Cathedral Lake
The next day hiking out from Cathedral Lake, we passed two female rock climbers with their full racks of climbing gear headed to climb Cathedral Peak. I was jealous, and realized I was woefully under-skilled and not at all prepared or equipped to climb Cathedral Peak. Since that failed summit attempt and seeing those two female climbers I’ve wanted to start rock climbing but have never gotten into it. Thanks to my friends and my company who pays for my gym membership, I am now training with the ultimate goal of doing a number of famous climbs in Yosemite! Cathedral Peak is the near term (probably about 2 years out), but there are more famous difficult climbs I would eventually like to try.
Lisa and Elliot are both doing well, and the little dude is starting to talk a lot! We had a great quick family vacation to Palm Springs a few weeks ago. It was our first “real” vacation of the year, since 9 weeks away from work for chemo doesn’t really count as vacation, ha!
That’s what’s been happening lately. I’d love to hear from you so feel free to text, call, comment, or email if you’d like to say hey!
Ugh. It’s been a long, tough week. Last Monday (one week ago) I started cycle 3, and it’s been a physically and emotionally challenging week, to say the least. This cycle really brought me to my knees – it has definitely been harder than the first two cycles. I mean I knew it was going to be hard but I didn’t realize this past week would be the hardest one yet. That’s the main reason I haven’t posted in a while, I just haven’t had the energy. But today I finally feel like I’m starting to turn a corner! I feel maybe 75% myself, but not quite at 100% normal. Hopefully in the next couple days that will happen.
Ready to HAMMER DOWN cycle 3!
I’ll start with the good: Saturday before cycle 3 started Lisa’s mom, Jevne, arrived to help! She was a key reason we made it through the week and has been amazing. Jevne even watched Elliot for us on Saturday night (her first night here!) so Lisa and I could have a date night! We had a nice dinner at one of our favorite restaurants in North Park, The Smoking Goat. Then Jevne watched Elliot during the day throughout the week so Lisa could take me to my all day infusion appointments. Clutch.
Easter Sunday we had a few friends over for dinner to celebrate. It was nice to have a normal gathering with friends before cycle 3 started, but I was still dreading the treatment that was going to start on Monday. I made the best of our time and enjoyed the food, but I’ll admit my mind was burdened with the weight of the week to come. I’m thankful for understanding friends who are willing to walk alongside me during this time.
A few other highlights of the week:
Monday night, our friend Philip and his mom Margie bought groceries and cooked dinner for us!
Our friend Nicole brought us a delicious dinner on Tuesday night even though her husband Joe, was away on a work trip all week.
My friend Jon took the day off work and drove all the way from Escondido to North Park and back to take me to infusion on Thursday so that Lisa, Elliot, and Jevne could have a fun half day at SeaWorld! Jon basically sat in traffic for me all day on Thursday, and I am so thankful for his help!
Our friend Kristen brought us our absolute favorite Thai food on Friday night!
Our friends Graden and Elle came over and cooked us dinner on Saturday night!
Our friend Olivia brought fantastic, deconstructed sweet potato tacos over for dinner Sunday night!
Several people from our North Park community group showed up for us in ways that we seriously can’t even wrap our heads around this week. You know who you are and you are incredible!
Our friend Adam Bartels happens to know Tyler Trent’s parents, so he shared my Purdue blog post with them and they graciously sent me a copy of Tyler’s new book! I started reading it at the beginning of last week when I still had energy and love it so far!
Tyler Trent’s new book. So far so good, this book has been a big encouragement to me!
There’s a lot to be thankful for here. The support we have been shown recently has been astounding and we couldn’t have made it this far without all your help.
Now onto some of the bad for the week. The veins in my arms are completely jacked up by the chemo drugs. The chemo has bruised the main veins on my inner forearms (yes veins do bruise and yes they hurt) and made it impossible for the nurses to start a new IV on any of those veins. I’ve said it before, and I’ll say it again: I HATE GETTING THE IV. It’s the worst part of each visit. I’m so stressed that the nurse won’t get it right and they will have to make multiple attempts to get a good IV (which has happened before). Thankfully, I had an amazing nurse that found an invisible vein on the top of my arm and started a good IV on Monday. I saved that IV for Tuesday (kept it overnight, which also sucks pretty bad but only slightly less than getting a new IV) and then got a new IV on Wednesday. The same nurse as Monday found the same invisible vein on the top of my right arm (previously it was the left arm) and successfully started my IV! Yeah that was a real stressor for me, but glad I made it through the week okay with the IVs. My arms look terrible now, but the worst is over.
Finally, I have just been super drained of energy this cycle. I feel like the chemo hit me harder this time. I’ve been zapped of energy and it really takes a toll on me both physically and emotionally. By Wednesday I’m basically reduced to a vegetable. All I can do is just sit around and space out. Everything takes an enormous amount of energy, even thinking, reading, and eating. As someone who spends a lot of time inside my head, you can imagine how horrible this is for me. To not even be able to think straight or read is very taxing and makes me really sad. So I just sit, and sit, and sit, and sit, …
Until finally I wake up with a bit more energy like today. Thankfully.
This week has been hard on our entire family. Lisa has had a lot of work to take care of with two busy projects going on, all while juggling Elliot duties and my daily infusion visits. There’s also the emotional component she’s been dealing with of seeing me sad and without energy and not being able to do anything about it which I know isn’t easy. She has been INCREDIBLE and is my ROCK!
BABY STEPS. I can make it through today. Tomorrow I’ll be a little better, and a bit better the day after that. Baby steps. Less than two weeks to go with cycle 3!
Day 1 of cycle 2 is complete, and I’m feeling good! I know that the chemo is going to hit me harder this week since I go in every day Monday through Friday. By tomorrow night I will probably be napping in my ugly ass amazing recliner!
So sexy it hurts
I wanted to fill you in on my chemotherapy regimen and give you a little bit more info and what my treatment is like. My oncologist prescribed three cycles of BEP chemo, where each cycle is three weeks, or 21 days. BEP is short for Bleomycin, Etoposide, and platinum, or as it is commonly referred to now, Cisplatin. These three drugs in combination are HIGHLY EFFECTIVE at curing testicular cancer. BEP chemo in combination with the surgery I might need afterwards has a 95% CURE RATE. That’s the highest cure rate of any type of cancer. Pro tip: if you have to get cancer, choose testicular cancer, it’s the best. Sorry ladies!
Three chemo drugs in total on a 21 day cycle. The infusion schedule based on the day of the cycle for these drugs is as follows:
Days 1 through 5: Cisplatin and Etopiside (Monday through Friday every day during the first week of my cycle)
Days 2, 9, and 16: Bleomycin. On day 2 Bleomycin is an additional infusion along with the Cisplatin and Etopiside.
I just completed the first cycle yesterday, Sunday March 31st, and today, April 1st, I started cycle two. Today was cycle 2, day 1 so it was only Cisplatin and Etopiside and the side effects haven’t quite kicked in yet, hence why I feel so good.
So how do these chemo drugs kill cancer you might ask? Great question!
Basically, Cisplatin – a chemical composed of platinum, ammonia, and chlorine – is the heavy hitter in my treatment. Cisplatin works by interfering with DNA replication, which effectively kills any and all fast growing cells in your body. Obviously that includes cancer cells, since they grow fast, but also includes things like hair, white blood cells, stomach lining, the outer layer of skin, and taste buds. Hence, many of the worst side effects of this drug. Also, Cisplatin has the potential to damage the kidney.
Fun fact about Cisplatin: the use of this drug to treat testicular cancer was pioneered in the early 1970’s by Dr. Lawrence Einhorn, a researcher at INDIANA UNIVERSITY!!! BOO, IU SUCKS! Note for those who didn’t know me in my Purdue days: Purdue and IU are bitter rivals and generally dislike or hate each other. Purdue hates IU so much they chant “IU SUCKS!” at home football games, regardless of the opponent. This past season though, for Tyler Trent, they changed the chant to “CANCER SUCKS!” I like to think they were chanting for me even though I didn’t know I had cancer yet, haha.
Before Dr. Einhorn started using Cisplatin to treat testicular cancer, the overall survival rate was only 5%!!! An article on the IU website summarizes his groundbreaking achievements and contributions to cancer research:
” Dr. Einhorn minimized the extremely toxic side effects of treatment; shortened the duration of two years of therapy to nine to 12 weeks; and established a model for a curable tumor, which has served as a research roadmap for generations of oncologists.”
Anyways, Dr. Einhorn was the dude that discovered that Cisplatin works really well when treating testicular cancer and I am ETERNALLY GRATEFUL for his discovery despite the fact that he is (still) at IU. That means 50 years ago this cancer would have probably ended up killing me. Thanks IU! Just so you know, I will probably still chant “IU SUCKS!” when Purdue plays them but I will try to be nicer now.
Ok, moving on. The second drug, Etoposide – a partially synthetic drug made from the mandrake tree rhizome – is more complicated, but basically screws with the DNA sequencing of cancer cells. I’ll just quote wikepedia because it summarizes how Etoposide works better than I could:
“Etoposide forms a ternary complex with DNA and the topoisomerase II enzyme (which aids in DNA unwinding), prevents re-ligation of the DNA strands, and by doing so causes DNA strands to break.[8]Cancer cells rely on this enzyme more than healthy cells, since they divide more rapidly. Therefore, this causes errors in DNA synthesis and promotes apoptosis of the cancer cell.”
Yeah, more cool science bro, it’s saving my life here.
Finally, the third drug, Bleomycin, is some really crazy stuff. It’s a “nonribosomal peptide,” which is essentially a chain of amino acids that are produced by bacteria and fungi. Researchers don’t fully know how this drug works, but it basically causes cancer cells to split, then the Cisplatin and Etoposide attack and kills these cells. I’m not gonna quote wikipedia here because the article is too intense. You can read it if you’re interested though.
The side effects of Bleomycin are different than the last two drugs. Bleomycin is the drug that gave me a fever during week 2 and sent me to the ER. It also causes scar tissue to form in the lungs that might make breathing difficult and potentially cuase long term lung damage. The Oncologist is closely monitoring my lungs to hopefully make sure this doesn’t happen. So far I havent’ had any issues with my lungs from the Bleomycin. I read tonight that Bleomycin causes a long term increase in toxicity to Oxygen, so I will need to tell that to any doctor if have surgery and need general anesthesia. It also means I probably shouldn’t ever scuba dive again. Bit of a bummer but I’m not a huge scuba diver.
That’s the summary of my chemo drugs and how they work. All of these drugs are given intravenously, which means I have to get an IV every day I have an infusion, or try to keep the IV from the previous day (or days) overnight. I HATE getting the IV. It’s probably the worst part for me. One nurse had to poke me three times on the third day of cycle one and then my arm was all bruised up. Ugh. But keeping the IV overnight presents a different challenge: I can’t get it wet, so showering is problematic. I ended buying some arm cast bags today on amazon so I can try and shower and keep my IV dry.
The benefit of the IV though, is that they give you the chemo drug slowly over the course of an hour so it doesn’t all immediately hit your bloodstream. If taken orally, the 45mg of Cisplatin I get every day would likely cause me to barf my guts as soon as I digest it and it enters my blood. So that’s the benefit of the intravenous infusion. I have to sit there all day but side effects are minimized.
I also get an extensive cocktail of drugs to manage the side effects: kytrol, steriods, and amend. These are given intravenously prior to the first chemo drug (usally Cisplatin). Additionally, because Cisplatin can mess up my kidney, they give me a full liter of intravenous hydration (basically saline solution) at the beginning and end of each infusion on days 1 through 5. On these days my schedule at the infusion center will typically look something like this:
Arrive at the infusion center, check in, and wait (depending on how busy it is).
Take my vitals: blood pressure, temperature, oxygen level, weight.
Get called back to the infusion center, start an IV if I don’t already have one.
One liter of intravenous hydration over the course of an hour.
Pre-meds (the three drug mix above for side effects above) for half an hour.
Cisplatin, typically 45mg dissolved in a liter of saline, for one hour.
Etoposide, weight based, somewhere around 1mg per pound of body weight, dissolved in a liter of saline, for one hour.
Bleomycin (days 2, 9, and 16 only), for 15 minutes or so. I don’t remember the dosage. I also get tylenol to help counteract fever and also Zyrtec for some side effect, not sure what that is, ha.
BOOM, that’s it folks! Today the above treatment (no Bleomycin today) took just under 5 and half hours. In addtion to the standard treatment above, I had to get blood drawn to make sure I was healthy enough to start cycle 2 and also visit the Oncologist to check in on me and make sure everything is ok. Turns out everything was fine so I started cycle 2! The blood draw people were running behind by an hour, which pushed everything else back today. My infusion ended at around 7:20pm and we got home just in time to see Elliot before his bedtime.
Even though today was a long day and ran late it was a really good day, much better than day 1 of cycle 1 where I was emotional wreck. Now I know what to expect so it was easier mentally and emotionally. I felt great and full of energy all day so I got some stuff done (still writing this blog post as of 11:50pm!), but better yet I had VISITORS! Five of my co-workers drove half an hour from the office to see me! Peter, Jon, James, and Scott stopped by for an hour and a half to chat, see what my typical day at the infusion center is like, and lift my spirits. It was a great visit. I’ve gotten nothing but love and support from my company during this time, they are really taking care of me well! I’m thankful I have a good job and work for a company that’s supportive and just wants me to get healthy.
These are some really awesome dudes that I work with. I work with some other really awesome people asd well who aren’t pictured here.
My good friend Philip also came by infusion center later to hang out, shoot the breeze, and give me crap. That’s how Philip loves on me, by teasing me. I have other friends who do this as well. YOU KNOW WHO YOU ARE. It was also great visit with Philip and I was glad he got to come by and experience my new normal.
Anyway, I’m up to over 1700 words now on this blog post. Kudos to you if you’re still reading! I’ll post another update soon with details on my brother and sister’s trips and some fun photos with them. Until then stay tuned!
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