Well wow, since my last update was almost a month ago, there’s lots to discuss.
It’s been a roller coaster but that’s nothing new. I won’t be able to go into as much depth as I normally do because I’m typing this from my phone as I sit on an airplane to Cuba! Also prob lots of spelling/autocorrect issues so I apologize in advance.
Head to the Timeline for a quick summary.
Prednisone taper: this started about early December. Everything went really smoothly and my LFTs continued to trend down towards normal at my biweekly blood tests. I finished the taper ceremoniously on my 30th birthday!
While this is good short term news, in that I was able to taper quickly and turns out I don’t have autoimmune hepatitis, but likely my liver just had a toxicity reaction to the ipi. It is somewhat disconcerting long-term news in that we no longer are sure that my immune system was activated, and if it was if was activated long enough to kill all the undetectable cancer cells. We don’t really know.
Discontinuing ipilimumab (or any systemic treatment for that matter)
Since I’ve had such severe reactions to the Ipi treatment my healthcare team and I feel that it doesn’t make any sense to keep trying treatment because the risks now potentially outweigh the benefits. We’ve exhausted all the available treatment options for stage 3 melanoma.
Obviously I am happy to be done dealing with all the craziness of systemic treatment, but I am honestly a little more nervous than I was prior to starting Ipi about my chances of recurrence. The uncertainty of not knowing if Ipi worked makes things a little more difficult to deal with than I initially anticipated.There is no way to know, the data is so new. So just watching and waiting for now, and that to me is a little bit scary.
The good news is I have no evidence of disease currently! Other good news is that melanoma treatment is advancing rapidly so likely if I ever do have a recurrence there will be better, safer, more effective drugs that can at least help me survive a lot longer and even be cured. Only 3 years ago a stage 4 diagnosis was essentially a death sentences, with a few months left to live. People are being cured now with new drugs like Keytruda (pembrolizumab)and many people are living for many years at stage 4. Anyway, not worrying about that now.
For me, even though I have no evidence of disease (NED). Melanoma is known for its high rate and risk for reoccurrence. We don’t call ourselves survivors because we could probably still be fighting it. That’s how I feel now. I’m still fighting and I’m not going to give up. I obviously have the trauma of misdiagnosis and strange and random complications in the past so I still have my guard up and I’m not gonna let it down until I’m NED for 10 years.
Follow up: For now watching and waiting means scans every 6 months and blood work a little more frequently.
for the first time in this graduate program, I got straight motha fuckin A’s this semester. Hot damn.
The major reason for my delay in updates were due to me trying to focus most of my time on studying for the NCLEX (Nursing Boards/ Licensing Exam). And any free time was spent trying to move my body in something resembling athletic motion remembering to eat food and interact with humans other than Lege at least a couple times a week.
Schwambomb RN, BSN
Welp, it all paid off because I PASSED MY NURSING BOARDS and you can officially CALL ME an actual Registered Nurse! After the exam I freaked out. It’s an adaptive test so it gets harder as you go. The minimum amount of questions you can get is 75. The max is 256 and your time limit is 6 hours. I had been practicing and preparing vigorously so that I could pass in 75 questions because I know I would move slow. The test shut off at 77-78 questions and I didn’t feel good about the last few questions so I went into “post NCLEX psychosis mode” and convinced myself I failed and cried for the rest of the day. Everyone I’ve spoken to since has felt the same way (at least that’s what they tell me). But I passed and I’m so glad it’s over!
Believe it or not, my program doesn’t end here and I’ll be spending the next 1.5 years working towards getting my masters and becoming a Nurse Practitioner specializing in both Women’s Health and Adult Gerontology Primary Care. But passing this exam is a huge milestone and also a huge burden lifted, and I will be ceremoniously be burning my NCLEX books since I can’t sell them back to Amazon. Other nursing friends, please join me.
I can’t end this section without throwing some shoutouts to all my nursing homies at MGH and beyond who supported me along the way, and after they passed scoffed at me and told me I’d be fine. Lege’s family and my family for allowing me to study even during some holiday celebrations.
It sounds like everything is great… what’s the roller coaster?
FEVERS RETURN WITH A VENGEANCE
unfortunately the morning I woke up to take the NCLEX, I wasn’t feeling very well. I assumed it was stress and nerves and pre-medicated myself before the exam. Obviously I was a wreck after the exam but then I started getting chills. I took my temp, low-grade fever. By the time I went to bed it was 101.2. I woke up several times during the night to change after my night sweats left me feeling like I was sleeping in a swamp. I called my oncologist first thing in the morning even though my fever broke on it’s own. I had an appointment to see them the next day. The whole rest of the day I had fevers/headaches and Lege took care of me.
The next morning was the scariest thing that’s happened to me thus far. My fevers tend to run really high at night. I checked it and it was 103.5. I woke up at 5am to use the bathroom. When I was washing my hands I started to feel really weird and had this horrible feeling. I ignored it at first and then when I tried to walk back to bed I just remember everything going black. Luckily somehow was able to peep out to Lege (who was fast asleep). I apparently said “boo I can’t see” in a tone that he says lit his brain on fire. Lege popped out of bed and found me backwards holding onto the door pane. He got his arms under me just as my knees buckled and half carried/dragged me until he realized I was no longer conscious and he fireman style launched me onto our bed. I came to to him being like “so we should probably go to the hospital” but I was confused and wondering how I got to the bed. So first I made him explain to me what happened. After a few minutes and profuse sweating by me, I actually started to feel better. We rang Dr. Schwam and he said it prob just made sense to wait until my appointment with Riley rather than go to the ED for no reason.
Lege spent most of the day with me walking me around like a 90 year old lady with a high risk for falls. At my appointment they took a million blood cultures and tests and UAs. My LFTs were elevated but only mildly. They were worried I had hypophysitis (enlargement/swelling/inflammation of the pituitary gland), which is an uncommon side effect of ipi. All my endocrine labs were either mildly low or within the normal range so I didn’t have to have an “emergent MRI” which was nice. The worst thing was my oncologist recommended that I not go to Cuba. I immediately told them that I was going to go to Cuba unless they thought I was going to die. They understood and helped me prepare so that I can be a physically stable as possible while I’m there. So I’m back on the prednisone train! While I was there they also gave me a liter of fluid and some snacks.
We started with a small dose of 20mg. But the very next morning I had another raging fever and the worst chills I’ve ever had. I was trying to spoon feed myself some yogurt (have to eat before you take prednisone) and my hands were shaking so bad I kept missing my mouth. It was scary. I spoke with Riley later on and she agrees to increase the prednisone to 30 mg and also take 600 mg of ibuprofen. Since then my fevers have been controlled, no more syncope episodes and I’m off to Cuba! I’m meeting with Dr. Lawrence as soon as we get home to discuss taper and get more labs. While I hate being back on prednisone, I want nothing more than to feel well so I can have a really great time in Cuba which I have been looking forward to for forever.
It was amazing! I was so touched at how many people came out to celebrate with me and I was even allowed to have a few birthday dranks (which we luckily found out didn’t effect my LFTs at all!
CHRISTMAS IS COOL
By the way it turns out Christmas is a really fun holiday to celebrate. I went to Lege’s family’s house where they house 15+ extended family members. They showered me with gifts and it was really lovely to hang with the Freedman’s, Rosenblatt’s, and Trittipo’s.
Lege and I will be traveling around Cuba for a week doing fun things like waterfall hikes, scuba diving, white sand beaches, and of course interacting with the locals and visiting some of Lege’s friends from when he spent a semester abroad there in college. After several delays we made it on our first leg of the flight! Can’t wait!
Late October I signed up to participate in the story project at MGH. It’s a place where patients, providers and family members share their stories about cancer and treatment and everything else.
It turns out I was completely mistaken about the process of The Story Project. I thought I was about to share my story (live audience style) with a bunch of random patients/caregivers/providers at the MGH cancer center. There was no stage or microphone – you can imagine my confusion when they directed me into a tiny room. Instead I had a really intimate interview with 1 woman while another woman snapped over 300 awkward pictures of me. Seriously, she was really excited about her new camera and as you might guess I am pretty bad at/highly dislike taking serious photos so it got pretty weird.
Mostly I’m happy to have another avenue to share my story to inspire others to fight for hope as well as advocate for everyday patient empowerment.
Thank you to everyone who has shared it.
I think that about sums everything up. There are some other school related updates I’ll share when I return home. 2016 was fucking terrible but I made it through and couldn’t have done it without all of you. I had planned on sending out some thank you’d and emails but thanks to the fevers I wasn’t able to get anything done but pack. I’m so grateful for all the support and I love you all. I’m still fighting, and I’m going to win.
Enjoy some random funny pics from the last month: