The decision seemed quite easy on what do once metastatic disease appeared in my liver. Luckily there are currently many options but deciding the best is looking at the number of tumors, size, locations in the liver/body, ability to travel out of state, desire on aggressiveness, downtime, etc.
Based on all the above and consulting with my CO, NY and PA ocular melanoma (OM) oncology teams it seemed like immunoembolization (injecting cytokines – drugs which stimulate or modulate immune responses) was the most reasonable first option to try and travel would be to Philly for the treatment.
Paul and I arrived in Philly Sunday and was greeted by my dear friend I have known and worked with for years. Having a friendly face in an unknown location was so nice. We enjoyed a fabulous Italian dinner and tour of the city – Kendra is one heck of a host and tour guide! Our motto has been with treatment travel since day one (San Fran, UC Davis, New York City and now Philly) – take lemons and make lemonade during the day and Titos with lots of squeezed lemons at night – new restaurants, new sites, new unplanned adventures and memories.
Monday, we met with Dr Eschelman, co-director of the Interventional Radiology for Thomas Jefferson focusing on OM metastatic patients. I had heard him speak at an OM conference in Denver in 2018 but prayed I would never meet him in person. He’s the interventional radiologist heading up my case and his team will conduct the procedure. In his office, we reviewed the options and then focused on the treatment I planned to have. I was so grateful for his humor and ability to ‘Lindsay’ dumb down what was going on with my tumors, the procedure, and the outlook. The analogies he made about my path – processing my reality much more simplistic. As Paul and I left the office we both said how much he reminded me of my grandfather. I would do anything to have my grandfather here to help navigate my medical path, speak in his physician’s ways, medical guidance to help lead the path and just give a hug to. The good news though – we always seem to stumble along some penny and if you believe in the penny reference you’ll know that my grandfather and others are def helping us along our journey. I felt confident in the plan, so Paul and I took off for the day to enjoy a new city and time together.
From the Reading Terminal Market (my new favorite market place), Independence Hall, LOVE Park, running the Rocky steps and everything in between – we hit the full city. One of my favorite stops was a draft oat latte at La Colombe (aunt Lisa for recommendation) and then a delicious last dinner at Parc (thank you Crawford family for the recommendation).
Tuesday was GO time. Arrived at Thomas Jefferson hospital and I have to say … what a well-oiled machine they have there. Everyone had a role; everyone knew their role and was happy. When one is scared out of their mind – a new city, a new treatment, a treatment that could ultimate save my life OR not – and all the emotions in between the care experience truly makes a difference in your outlook and ability to breathe and be positive – SO although I know the Thomas Jefferson team will more than likely never read my post, I hope I have the ability to always share real time my gratefulness and gratitude for their ability to make a scared girl from Colorado able to breathe and enjoyed speaking with them – their professionalism, laugher throughout the hospital and kindness I was given!
I was called right back to pre op and got the little things out of the way. (Covid negative, not prego, labs, etc). I always joke and tell Paul – guess what, I am not prego and his response is good as the amazon driver owns me rent if so. It’s the stupid, silly, small things that keeps Paul and I getting through a day sometimes and I appreciate his way to calm my down and laugh.
Luckily another OM friend told me to keep my phone with me the whole time so I could communicate along the way. Thank goodness Chad (my OM friend) having the same procedure the same week shared that as I went about 10 hours with not seeing Paul.
I said goodbye to Paul having no idea when I’d see him again.
They then whisk me off to another pre op room – this was for just OM patients having some form of embolization. Crazy – there was (I think) 8 patients having some form of embolization. Immuno, radio and chemo that day. All options are determined by the size, number of tumors, location, previous treatments that have worked or not worked, etc.
As I arrived on my roll away bed, I was greeted by my nurse for pre op/ post op and asked how I was. I said great…then I stopped and said no, I am not great. I was not ready to say goodbye to my husband, but I did, I am scared for the treatment, I am scared for what my future holds – I am just anxious, scared and every emotion in between. It is so hard to show true colors, but I have learned in these moments I don’t have to be strong – I can be scared and showing vulnerabilities is ok. The nurse kneeled at me, looked me in the eyes and said – Lindsay, I know but we got you. It helps and I guess (my little advocacy advice) because I can’t always be strong and I am also not a number. I am a wife, mom and have so many titles and going through this is so scary. Although I would never deserve or expect extra care because everyone surrounding me has their story – they have their own network of friends, family and those cheering them on but again we are real people and showing our realness is a way to show we are people and not a number. The little gestures, the little acts of kindness go so far.
IV line set and the nurse and Interventional Radiologist resident came by and shared what would happen in their own words. I thought I knew but thank goodness they explained and help my mind be blown even more. As I waited, I heard a young voice next to me – she then heard me, and I pulled the curtain back and we started to talk. She was dx in 2011 – and I having chemo embolization. Always nice being around my OMies because we all have our own story, our own crazy details but we get each other. We get the disease, we get how aggressive and scary it is, we get it. Please send your prayers to my new friend too, she is young with a young daughter and such a wonderful, beautiful person. We laughed, cried and it was truly amazing to talk.
It was then my turn, and I was taken back to the room. As they prepped me up there were laughs and I said no judgment on what I may say while sedated.
I was in and out consciences as they inserted the catheter through my groin. After the catheter enters it moves up my arteries into my left lobe. I have tumors in my left and right lobe but the biggest concern is the left, so we started there. Only one side (lobe) at a time. But….it’s me though right – the girl that likes to cause my doctors to think. My artery anatomy was quite unique (they say) and I could hear the doctors re brainstorming the plan. As the catered goes up, I am under a CT X-ray to see my anatomy and map to the right location. The main artery they planned to use went to my stomach (are you kidding me right). So, the docs had to go back to the drawing board and find the right path. Mrs. Captain Ron and my treasure map, lol! The best part, the day before I warned my care team that I am never easy and something would go wrong. Once they had to brainstorm I could hear the interventional radiologist team say….Lindsay – you are right and not easy, (all sedated) I laughed. After my left lobe was found I was inserted with the immune drugs and then more drugged up more to lay flat for 6 hours.
Post procedure, the doc applies pressure for about 20 min on my groin (the insert site) to heal. They said there is always a small chance the site will open back up after the 20 min and the healing of site will begin again. Yep – that was me. After coming too, I yelled out I was in pain and sure enough the small chance happened to me, and I started bleeding again. More pressure was applied for another 20 min, that hurt like a mother ‘beep’ – so painful.
But I got through it with more drugs and then stayed in the OM post op area lying flat unable to move for 6 hours. Once a room was ready in the hospital for my overnight stay – poor Paul was awaiting the call to know I was ok and what room to meet me in.
About 10 hours later Paul and I were reunited. Just in time for a kiss and the nurse to kick him back out since past visitor hours as he couldn’t stay (Covid rules) and I had a shared room.
The hardest part post procedure was I had to lay flat for 6 hours, no moving to prevent the site from opening and bleeding again. The night in the hospital was horrible – let’s be honest….no Paul, couldn’t move and super nausea. The side effects started to kick in – but luckily, I had the ability to self-medicate my pain and sleep.
Next am – due to the complication during the mapping of my arteries, I had CT to verify all was good and the immuno drugs landed in the right spot. Good news they did! #1 of Immunoembolization (IE) completed!
Mid-day I was discharged and walked back to the hotel – 2 blocks. Nice to breathe the fresh air but exhausted when I arrived. Back to lying in bed. Extreme pain moving and nausea.
We returned back home the following day and was greeted by my closest college girlfriends – it was nice to laugh, and the treatment side effects were flu/horrible hang over. There is no other group of friends that knows me best and I’d like to lay around and connect with then my college friends – they know that hung over Lindsay all too well, lol. AND amazing gratitude to my CO momma friends….my house was filled with the most beautiful flowers, spa/relaxing gifts and etc.
Between Paul, my kids, my whole family, my girlfriends, our friends across the country, and Paul and I’s work – we’ll get through this with so much more gratitude. I have found reflecting on gratitude makes the fears and unknowns of the future more manageable. Thank you to those that love and support us daily!
- Head back to Philly for #2 for early December treatment.
Most looking forward to: the humor and confidence of my care team, a draft latte (this was my first experience and LOVED it) and all the niche food options at the Reading Terminal market. It’s steps from our hotel and a great go to for local niche specialty goodness in one city block.
- Scans in January to determine future steps. Options: (1) No new lesions – IE treatment is working and continue to scan for changes (2) No new lesions and signs it’s working but more treatment needed and back to Philly (3) more lesions are found and venture down another path. Although I am positive and appreciate everyone’s positivity – I must always have worse case in the back of my head. This dx is so mean, so unpredictable, so aggressive and I have to mentally prepare for anything.
Love to all! Thank you for being on my journey!
Each day is a gift – give those you love some extra love today!