As hard as I try, I still can’t properly manage the rollcoaster emotions most days as it is so hard to process gratitude yet sadness and fear in one thought. But…feeling super lucky as I share the past month of thoughts and reflections on my journey.
I left Philly for immunoembolization (IE) #2 in December with a date already booked to return for IE #3. In the moment I was so hopeful I’d be returning for #3 as that would mean nothing new found (no new tumors) and some progress to say this treatment may be working.
We booked our hotel and flights back to Philly and proceeded to the holidays – all was good and a week later we left for the Bahamas for two weeks.
Returning back to reality (from our dream Bahamian vacation) in Jan was an adjustment – Labwork, 2 CTs, 2 MRIs.
Blood work since Immunoembolization (IE) continues to be good which is a nice relief as that has not been the case on other trial drugs.
Scan outcomes since treatment could pan out three different ways:
1. No new tumors and treated tumors shrinking – treatment will go on hold and scan again in a few months
2. No new tumors are found but continue 2 more rounds of IE treatment to keep killing what’s there and may be lurking
3. New tumors found, treatment not working – come up with plan B.
I’ve been having scans for almost 5 years and they don’t get easier.
The day of scans in January was so bittersweet – the bitter: I had no desire to function. Tired, scared, just numb. The premedication drugs I have to take per contrast allergy don’t help, but I was so blah and ended up being at the hospital for over 5 hours getting through them all.
The sweet – I had the best nurse insert my IV. Let’s just say, I have had some horrible…yes horrible experiences as I am not an easy stick. It usually takes a couple sticks to insert – my record is 4 different nurses/techs and 7 sticks:-( but today it was 1 stick and 1 great conversation. Thank you to all nurses out there BUT truly thank you to the ones that truly care and radiate compassion and empathy. Also- huge win that my tech buddy was there. My scans (MRI to my liver with a specific contrast and then MRI to orbits with another contrast) + 2 CTs is not the normal. I can’t tell you how many times I have had tears coming down my face when the techs and radiologist have pushed back on what is supposed to be done. Yes, my cancer is super rare and yes my scans and directions are not normal but this is what the best of the OM experts say and no one is telling me no so please just read my history – I am rinse and repeat….follow the scan orders please!
Anyway – my tech buddy that knows my story and my crazy deal found me and told me he had to leave but he relayed to the techs to follow the plan and don’t ask questions. For someone to proactively remember me and then fight for me, and share with others the plan and don’t deviate – I am forever grateful to him!!!
The next day my scan reports came back and I was so relieved to read there were no new Mets found and my current tumors appear to be stable so I knew right away it was option 1 or 2 and I was so lucky. Major celebrating was underway.
The following week my Philly team reviewed the scans and let me know they wanted me to come back for IE #3. Keep in mind, this is what I had planned for (for over a month) – knew this was one of the best case scenarios (truly prayed for this to happen) but when getting confirmation I was to return it was like a bomb went off in my head and I could not control my emotions. Sadness, fear, anxiety…all the emotions I did not expect but here they came raging in and a really crappy reminder of my reality. And then the mixed emotions – grateful I have the best care team, grateful I only have a few tumors we are dealing with, grateful for this wonderful life I live and have but so mad – so mad this has to be a focus in my life – but so lucky things are stable. This back and forth of gratitude, knowing how lucky I am yet so much fear and just frustration this is my life.
Luckily my village is strong and a super close friend picked me up – quick lunch and laughter and helped me prep for the trip. Staying focused and blessed I can continue – breathe and move on.
One of my new favorite quotes I found – pretty much sums up how I feel a lot of the time and then try to be on the flip side “You don’t always have to be strong. Sometimes you need to scream, cuss, throw shit, or have a really good cry. But you always, always, always need to pull yourself back together, then go back to being the badass you were meant to be.” Unknown Author
Before I headed to Philly for treatment I completed my mandatory Covid test THEN BOOM again…a curveball. My Covid test came back positive and I couldn’t travel for treatment. Too be honest – I was in total shock as felt great and I could only laugh and feel lucky and maybe someone was looking down on me because I was really not mentally prepared for the journey. Looking back the week of my scans I was numb, tired and that is probably when I had Covid (luckily and so blessed on my mild symptoms).
My Philly care team is truly amazing and rescheduled me to return a few weeks later.
Fast forward two weeks – Paul and I are currently in Philly. We met with my oncologist and one of the rotating interventional radiologist. Wonderful to meet in person and confirm the plan. We reviewed my scans and cool to see the how the treatment is highlighted in my liver (it’s there doing it’s thing) while also seeing stability. I will have immunoembolization #3 tomorrow am, come back again in 6 weeks for #4 and then scans and plan for the next few months after that. Love my Philly team and the amazing collaboration and support and communication between CO and Philly.
Biggest thing now is stay stable and pray nothing new appears and continue to reevaluate the path forward every few months. I’ll never be in remission, I’ll never been in the clear, but there is HOPE…
Accepting prayers for my treatment tomorrow, arriving back home to my kiddies and to Paul for being my muscle through this all – always being so raw, always providing so many laughs and a hand to hold.
Other exciting news this past month – ‘If there are options there is HOPE’ and January 26, 2022 was FULL of so much HOPE!!! On 1/26/22 the FDA approved the first treatment for metastatic melanoma for OM! Unfortunately, I do not qualify for this drug (that’s also a bag of mixed emotions) BUT this research, this foundation, and the passion for those evolving the OM landscape is unbelievable. This foundation of this research and FDA approval provides hope to so many immediately and the foundation for so many more drugs/treatment to come. 10 years ago there was 1 approved treatment for cutaneous melanoma and now there are 16! Excited to see where OM will be in the days, months, years to come!
To those that have donated to the MRF and OM research, you are making a difference! You are saving lives and I am forever grateful! Living with OM is beyond scary BUT I will continue to focus on HOPE! Huge win! Thank you to the OM community – we are small yet mighty and some of the most driven, inspiring, passionate folks I know!!!!