Battle of the Buns

It has been a few weeks now, but what a weekend that was! I think we almost needed this much time afterwards to breathe and properly reflect on the entire experience. I would like to once again thank all who participated, attended, donated, volunteered or sponsored. We really do consider our first event a success and it would not have been possible without all of you!

Altogether, the event raised more than $20,000 for Love Your Buns, and furthering the cause of educating, empowering and improving survivorship for all colorectal cancer patients, caregivers and families! Thank you!

If you missed it, here are some links to the band performances, big thanks again to these performers who truly made it the battle of the buns!

Link to Video 1

Link to Video 2

Link to Video 3

In addition to the money raised through sponsorship, free will donations, and band votes, the silent auction also raised a good amount of funds for Love Your Buns. Thanks once again to all who donated silent auction items! Many photos from the event can be found here so check it out!

Trial Update - Stupid Neoantigens

As I mentioned in my update in February, we were very hopeful for involvement in a trial being held at Columbia University that would leverage a Neoantigen Vaccine therapy. Unfortunately after visiting Columbia, registering for the trial, then going through a number of weeks of fighting to get the correct samples from Sanford and MSK, and additional lab work to the trial coordinators, and then yet waiting additional weeks for the initial vaccine testing, we got the email we certainly weren’t hoping for:

I wanted to pass on that, unfortunately, we heard today from [the study sponsor] that production of a potential vaccine was not successful… Because this is new technology, it is not clear exactly what caused vaccine production to fail, but it may be related to a relatively low number of mutations in the tumor from what we could learn. I’m sorry to give you this news.

I do want to thank the team at Columbia for their efforts. They were very kind throughout the process and were very good about keeping us informed of progress throughout and answering our questions. So onward we go in the search for additional treatment options and trials.

Treatment Plan - FOLFIRI Sucks

In the meantime, I’ll be proceeding with the standard second line chemotherapy, FOLFIRI and Avastin. So far I’m six cycles in, and needless to say, I am not a big fan. Between the hair loss, the truly debilitating nausea and vomiting, the strange nerve popping on infusion days, the acid reflux throughout chemo weeks, this ‘medicine’ is not easy to take.

Never-ending Nausea
Most cycles, it’s a toss-up of either being fully knocked out for days by anti-anxiety or anti-psychotic meds (which really do seem to help cut the nausea) or be stuck with nausea that easily surpasses any I’ve faced before. The nausea and vomiting from the 5th cycle was so traumatic, that in that moment I contemplated stopping this treatment. Obviously I continue onward, but I need it to not be like that!

The good news is in the latest cycle, I think we finally found the right mix, which included a new anti-nausea patch and a single push of an anti-anxiety med that seemed to help on cycle 3. It hasn’t been perfect, but this week I even worked from the office for part of a day! (Normally, for chemo weeks I have had to work from home for the entire week)

Thanks Crystal! (Velvet Secrets Hair Extensions)

Hair Loss
So yes, Irinotecan causes hair loss. While the speed of loss isn’t as extreme as some other chemo drugs, it’s been taking its toll and I finally made the decision to purchase some wigs and shave my head. While this has been a little different and brought some funny reactions from my kids, it has actually been kind of freeing and we think it looks pretty good!

Scan Update

After four cycles, we did another CT scan to check on progress. Everything about the scan went as it normally does. Not terribly invasive, but a bit boring to have to deal with the two hours of drinking to prep, and of course I don’t love the continual exposure to CT radiation. But then I got a call from my oncologist at about 9:30pm…Never a good sign...

It seems the results of your CT scan showed a small blood clot/pulmonary embolism in your lungs…

Pulmonary Embolism
Oh that’s just lovely.

So we got to have a fun evening in the ER, checking out my heart and making sure everything else is going OK. And all was fine, but now I will be on blood thinners for the foreseeable future, and will be at risk for bleeding. We were glad it was found though, and appreciate that we did another scan at 4 cycles instead of 8.

The Tumors are Shrinking
There was a fair amount of good news from the scans:

No new spots were found
None of the spots grew
Overall the lung tumors shrank by about 20%
The liver tumor shrank by about 50%, maybe more

The liver is still a funny one and we still wonder if it is actually active cancer. If you recall from previous posts, the MRIs actually didn’t show that there was anything there, while the CT showed a suspicious area approximately 2 x 3.5cm. Obviously we’ll continue therapy due to the lung nodules, but if they weren’t there, we’d probably be asking for further diagnostics on this liver thing.

Managing the Crap Nature of Current Treatment

So yeah, this treatment sucks. And we’re on the lookout for other options. Including ways to manage the pain, anxiety, and of course nausea that comes along with it.

Medical Marijuana
As many know, North Dakota has recently started its medical cannabis program, which has been approved for various medical conditions, stage IV cancer being one of them. The process hasn’t gone without kinks, and it was a little challenging to convince my oncologist initially that he should approve it. But living in North Dakota, I get that he likely faced a lot of pressure and actually I might have been the first to be approved at Roger Maris.

It’s actually quite odd, that cannabis has been criminalized for so long. I am not going to try to get political in any way here, but although cannabis is not without side effects, it’s comparatively a very safe substance, and many recent studies show patients who are given medical marijuana are often able to be slowly weaned off of potentially dangerous or addictive pain medications (i.e., opioids) or anxiety medications (i.e., benzodiazepines). Of course we have all heard the headlines that it also can stop cancer in its tracks. All of these are great claims, which need more studying to prove out how and where it could be most beneficial.

In my own case, I have used it to attempt to manage nausea, maybe help a bit with anxiety. Most times it just makes me drowsy. Maybe if I increase dosage it can help me in other ways, but so far I’ve been taking it pretty slow.

Jarod is Still Looking for a Job

Jarod still has no job and now seems to fancy himself as some kind of professional composer of music for films and video games. If you know of any organizations who might need a strategy consultant or someone to help with music for their next TV or radio ad, please feel free to let them know he is available!

While we’re doing our best to be patient and I want him to find the right next job, COBRA insurance is not cheap! Please pray that the right opportunity shows up soon.

What’s Coming Up for Love Your Buns

Walk & Talks
We’re back at it with our twice weekly Walk & Talk series. Anyone is welcome to join us for this therapeutic venting session. We will likely have a session or two this summer that includes live band performance, and as such may be a Rock & Talk. Please join us when you can and stay tuned for more info!

Love Your Buns is a non-profit initiative aiming to remove stigma and improve awareness around rectal cancer, its prevalence and its symptoms. A growing epidemic in young adults, rectal cancer is easy to remove if caught early, however due to a variety of reasons, young adults are not likely to seek screening options like colonoscopies. This gap in screening is leading to more advanced disease at diagnosis and more challenging and strenuous treatment. We're working to Educate young adults to increase awareness of the signs and increasing prevalence of Rectal Cancer and to Empower informed decision making and Improve quality of life in Survivorship.
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Love Your Buns, even if they don't produce enough neoantigens