We are getting into the swing of Summer time!! Woooooooo! I love summer in Oceanside; the beach is buzzing while the hot sun helps perfect that golden shade of brown (gotta get your tan on!)Downtown Oceanside offers plenty of stuff to do (including foods and drinks), ice cream on the strand is another highlight, and of course, some late night bonfires along the water or at Nevada House. Also, summertime brings visitors! I’ve had both of my folks out here, another visit from my Uncle Mike and his family, and we’ve got the Big Bach Party coming up this weekend! Lots of adventures for summer ‘22, with more to come in July and August. Gotta get to work though if having this much fun during summer.
And with these summer adventures, I’ll continue with my usual schedule in regards to cancer treatments. Since January, I’ve been taking a new Immunotherapy pill 2x/day; I also receive an infusion every 4 weeks of two other immunotherapy drugs. The goal is for these three to synergize and help fend off the cancer for as long as possible. So far, things seem to be working well. My oncologist has been pleased with scans and bloodwork and overall, the day to day isn’t horrendous. In terms of prognosis, not a ton has changed. Manage the disease, keep the body moving, and stay alive as long as possible while maintaining a decent quality of life.
I am continuing to receive Home Health services 5x/week to help with challenges such as pain management, wound care, and the overall general maintenance that comes with having a terminal disease. I’ve been so fortunate to have a tremendous support system; I’ve been working with the same nurse for three years now and he has been a literal life saver; a true guardian angel in the flesh. Without his support, coupled with my roomies saving my ass (literally and figuratively), there’s no chance I’d be around today to experience the love, beauty, and adventures that this life has to offer. Cheers to you guys!
The whole Medical Aid in Dying situation got a lot more real about 4 weeks ago after I went ahead and ordered my end of life drugs. After a discussion with the pharmacist and some necessary paperwork, the drugs were delivered under lock and key back in May. Let me be clear- I don’t plan on using the medication anytime soon (and it’s always been my hope that I will never have to use it, I hope to simply die in my sleep when it’s my time), but having it on hand and available as an option is very important to me.
The reason I decided to obtain the MAiD medication is because of the current lawsuit, or “preliminary injunction” that is going through the California legal system. To summarize, a group of doctors in Tennesee (the Christian Medical and Dental Association), are suing the state of CA based on the recently amended End of Life Option Act. I will be involved in the lawsuit as an “intervenor”, and am fortunate to have the support of Compassion & Choices during this legal process. The reason I decided to participate is because if the preliminary injunction goes through, terminally ill Californians will no longer have access to their Medical Aid in Dying medication until the legal process has concluded, which can take years in some instances. I encourage you to read the Compassion & Choices press release regarding the matter.
My rationale behind obtaining the medication was that if the opposition won the preliminary injunction, at least I would still have the medication on hand. Even this scenario poses a problem; the medication has a shelf life of 6 months, and naturally this case and preliminary injunction will take much longer than 6 months. For example, they were supposed to make a ruling on May 27th, which was delayed to June 10th, and then delayed again to July 10th! This was right after I obtained my medication, which means I’ve essentially already burned 2 months off the shelf-life (I would have waited to fill it in July had I known the case would be delayed). Not only that, but the medication isn’t cheap, costing $708 out of pocket. After becoming more involved in the End of Life advocacy, I’m starting to recognize the tremendous barriers and inequalities that obstruct people from being able to obtain this medication. Everything from the price of the prescription, oppositional groups with different beliefs, even to finding a doctor who will support your cause- it can be a grueling process.
As I reflect on my cancer odyssey, I have to admit I never imagined it would present these different scenarios; the DwD Podcast, working with Compassion & Choices, and being involved on the advocacy frontlines through the preliminary injunction lawsuit. I understand it sounds odd, but these are some of the good things that come with having a terminal disease. I’ve met so many new individuals who have such a desire and passion for making a difference, it’s inspired me to try and be better. I’ve had the chance to advocate for a cause that I firmly believe should be a medical choice available for all people who have a terminal illness, and this advocacy has led to unique projects and opportunities, such as participating in an online Webinar about living life with a terminal disease (shoutout to all of those online attendees, love ya!), or being interviewed for the Compassion & Choices magazine which was released this summer!. It was such a cool experience and I hope you get a chance to check out the article. Please email me if you’d like online access to the whole magazine, they had some amazing stories in it this month with really spectacular people involved.
Finally, related to advocacy, the cancer journey seems to be directing me back home to Illinois. Illinois doesn’t offer Medical Aid in Dying as an option, so even if I wanted to move back home to be with my family, I haven’t even had a chance to flirt with the idea because I am set on living in a place where I can have MAiD as an option. As Illinois is lagging in this department, I’ve been able to get involved by contacting local legislators (with the help of my mom, we are connecting with her reps!), in an attempt to bring the discussion of MAiD to Illinois. C & C has been so helpful with this process by developing this short video which shares my story and passion for choice regarding MAiD (look for Jaxson to make an appearance, he’s the real star of the video!) in Illinois. Check it out and let me know what you think!
Ultimately friends, things are taking off! These little items continue to add up, compound, and make this life more meaningful. I have a feeling Summer ‘22 is shaping up to be a beauty, maybe THE ULTIMATE summer! I look forward to the many adventures ahead and always look forward to hearing from YOU, so don’t hesitate to reach out via text, phone call, email- whatever floats your boat!
Thinking of you and love you tons.