Before launching into my results today, I just have a few general announcements:
Page updates: I realize there are a lot of new characters involved in my care/life. Clearly we’re not at Game of Thrones status, but there have been enough additions and enough nicknames to prompt some confusion from readers. Thus I have updated the About Me section to include a roster and description of most people involved in the blog, which includes family, friends, and my healthcare team. This will be especially helpful if you are new to me or my blog. Also for new readers, the quick and dirty details my entire situation are most efficiently understood by reading through my Timeline page which starts from the beginning and moves chronologically to my current/future situation. For more details you can click on each blog post separately or read them from the home page.
I have also added in “read more” links to older blog updates so that the homepage doesn’t go on for eons.
Reading these posts: Many of you get the blog updates sent to your e-mail inbox. However, usually after publishing blog posts, updates and edits tend to happen almost immediately due to people pointing out huge gaps in my writing or me forgetting something or someone sending me something that goes great with current blog post. So I’d recommend just going to my live blog for the most current version if you want the most funny/accurate information. ok that’s it for housekeeping.
Edit: @11:47AM EST on 12/9/16 – I have updated/edited this post 6 times already since it was published 4 hour ago.
Well hello there,
The Liver Biopsy Experience:
Before I get into the results I figured I should share a tiny bit of my experience of going through the actual liver biopsy… so here it is:
The liver biopsy itself was a piece of cake. Honestly the hardest part was having multiple nurses fail at getting an IV in my arm and not being able to eat for 14 hours prior to the procedure. They gave me some conscious sedation and told me I could go to sleep but I wanted to watch the whole thing, so I did in a sort of woozy state. First an ultrasound technician took a series of pictures to find the best spot on my liver for the biopsy (as to not hit any arteries and such that are on your liver). Then the surgeon guy numbs me up specific to my liver site and then sticks a needle in my liver for 5 seconds and extracts a tiny piece of liver tissue (for biopsy). They made me stay in the recovery room for 2 hours after that to monitor for bleeding. There was none. So I went home eventually and that was that. It was pretty painless and by 1.5 days later I was back to fully functional schwam (AKA I could laugh without much pain and run down the street to catch the T).
Liver Biopsy Results: A mixed bag
Co-written by Dr. Eric Schwam and myself
So we got the results – and things are complicated, but what else is new!? I have asked my Dad (Dr. Eric Schwam) for a 3rd time to help me write this post for a number of reasons: 1) we make a great blog team (IMHO), 2) I am trying to spend a majority of my time studying for the NCLEX, 3) This shit is complicated and my dad is good at being succinct/clear without using too much medical jargon (although there’s a spectrum and I have lost sight of the layperson version these days), and 4) I can spend days writing these posts which brings us back to reason #2
So my Dad has sent me his his version of a blog post and I have edited and added to it as I see fit. Most of what I type is in teal italics, but I also have done some general editing to my Dads writing that will not be obvious. Just figured I’d say that to cover my ass in case I mess something up.
Dr. Schwam – Thursday Dec 8, 2016:
Hi folks. Elana has asked me to write part of her update again, while she studies for the nursing boards (AT LEAST THAT IS WHAT SHE TELLS ME SHE IS DOING!) I’m becoming a regular contributor. Maybe I will rethink my decision to avoid social media.
Elana: Ha. Ha. Nice one dad. Also, I AM STUDYING.
Today we met with Dr. Lawrence, Riley, and Dr. Carolan (Elana now has her own hepatologist, or liver specialist). We received and discussed results of her liver biopsy and today’s liver test results.
The liver test function test (LFT) results were very encouraging. Her AST (29) is within normal range and her ALT (65) is still mildly abnormal but MUCH improved. Her Alk Phos (111) is still mildly elevated but nobody is concerned. This is very good news.
The liver biopsy was most consistent with a liver injury with evidence of regeneration (healing – this is good) but also very little evidence of an autoimmune hepatitis reaction. Rather than producing clarity as we’d all hoped, the results introduced additional uncertainty. According to Dr. Carolan, the most straight forward interpretation of the results is that the ipilimumab (“ipi”) or one of its breakdown products was directly toxic to the liver (i.e. a drug-induced hepatotoxic reaction).
Alternatively and less likely, it could still be autoimmune hepatitis because of 3 reasons:
1) the biopsy was done early in the course of the illness
2) the biopsy was done after a week of treatment with prednisone (which could have altered the evidence of immune reaction)
3) occasionally ipi-induced autoimmune hepatitis can look like this on biopsy anyway.
Elana: What is clear is that, these drugs are so new, nobody really has any idea exactly what the fuck is going on. We do to a degree but, as you may have noticed, things tend to change rapidly over here all the time.
Dr. Carolan feels that Elana can taper her prednisone rapidly over 2 weeks (as one would do for a drug induced hepatotoxic reaction) instead of the 6-8 weeks that the autoimmune hepatitis would require. This is also good news; you need to take as much prednisone as you need, but the less prednisone you have to take, the better…
If this is, in fact autoimmune hepatitis masquerading as a drug induced hepatotoxic reaction (like a a wolf in sheep’s clothing) then as the prednisone is tapered, Elana’s LFTs will start climbing again. Therefore her doctors and Riley will be monitoring her closely for this. They will be checking her liver tests twice a week. If there is such a rise, she will go back to Plan A and take the prednisone for the 6-8 weeks.
Elana: NOOOOOOOOOOOOOOOOOO. However decently good news is that so far, the only side effects of prednisone I am experiencing are transient mood swings, which range from great joy to intense & irrational anger (which really only my poor dear mother has had to experience first-hand – if you see her give her a hug, she takes the brunt of my worst because we are so close. I love you mom and I’m sorry I got so frustrated) – to deep sadness and grief related to all of the above.
A photo tribute to my mother because we are so photogenic
So yes, I am very excited to taper the prednisone quickly because It’s really difficult not to be able to control or predict your own emotions. Even though it’s possible prednisone has helped me OCD clean my apartment and finish my school work in record times, I would much rather be a stable emotional human. Also send your love to Lege because he’s the other person that has to deal with me everyday at the end of the day when I am my most hangry and unpredictable.
So did Immunotherapy (Ipi) treatment actually work?
Dr. Schwam: The problem is that to some degree this throws into doubt the issue of whether Elana has had “enough” ipi to fight the cancer or not. This is a complex and nuanced issue that is based as much on gut feeling as on science. My sense is that Dr. Lawrence feels that she is probably done, but he has not decided for certain. As for me, I don’t think she should get any more ipi, but the decision is Elana and Dr. Lawrence’s to make and I will defer to them.
Particularly with cutting-edge medicine, there are so many decisions that have to be made by educated guess, rather than hard evidence. An educated guess can turn a 50-50 decision into a 60-40 one; better odds of being right, but not by much. As a result, this kind of sudden unexpected change in the clinical situation is very common. One minute, you have adjusted to a health crisis and are moving forward with your hopes and despite your fears. The next moment, the littlest thing can turn you upside down , you become emotionally destabilized, and you find yourself struggling to readjust again. Kind of like having your sailboat capsize in a big gust of wind and having to right it, rescue yourself, and start sailing again. Elana and I have been through that situation together before. We will all get through it this time, too.
More of Elana’s Thoughts:
The rest of this blog post is written and edited by yours truly (Elana/schwambomb/Lany) and I’m stopping with the teal italic font because there’s no need for it.
All of this was somewhat unexpected news for me. If you read my last post you know that I was settled on the fact that I was done with Ipi, that I thought my immune system had responded. But now that this is unclear I am conflicted again. I will ultimately take the advice of my healthcare team after discussing it more with Dr. Lawrence, if it even comes to that. However, I am clearly traumatized from having a “missed” diagnosis more than once in my life. The other issue is that Ipi just may not ever work for me, no matter how many doses I get, because that’s part of its “lock & key” mechanism. Either it works or it doesn’t and if it works, then you hope you get it al with how many infusions you get. It is clear Louise is irritated by ipi, but we don’t know why. So here I am just typing out my thoughts. I am probably not going to get another Ipi infusion. I am scared of creating new unnecessary health problems. We have therefore exhausted all our options for stage 3 Melanoma so it’s possible after all the liver bullshit settles (assuming nothing else pops up which is actually a possibility because autoimmune side effects can occur as late as 3 months after the last infusion) – that we will be done with active systemic treatment of Melanie and will continue only with vigilant watching/waiting and scans every 3-4 months for the next 5-10 years.
The ups and downs of cancer and Melanie are not new. Just like my Dad says, we will get through this, and the craziness seems like it should be slowing down soon. I will continue to post and have many people now lined up for guest posts including the momschwam herself, Lege, and my Aunt Val. If you too are are interested in guest blogging, let me know!
I have sooooo much love and gratitude for everyone. I get emotional every time I think about all the wonderful friends and strangers that have impacted my life since this diagnosis. You all mean everything to me. Don’t be afraid to talk to me or ask me questions or tackle me out of the blue.
Below is just a very small portion of the love I have received from people the last 5 months. Also the most recent one from Paula is pretty amazing.
In an attempt to not repeat myself or my Dad you can just go to the Timeline and scroll to the bottom for a summary of what the future plan is.
So the medical/necessary updates end here. If you want, below this line you can read about some of my escapades and semi-interesting things related to my life that do not involve cancer.
Life Updates and Upcoming events:
GHHH Ultimate Tournament: I went, I played, I saw lots of old and current (and made new) friends. It was a blast. I also got really stoned at the after-party and briefly considered the notion that cancer was a social construct. I also spent a majority of the night hiding and eating ice cream and pizza and looking for my lost water bottle. I have decided that I will not be ingesting marijuana anytime soon as it just makes me question EVERYTHING. Also, Anthony – (a friend of mine but also the fiancé of one of my closest friends and former Brute TEAMmates, Sara Jacobi) made me a replica of his league hockey jersey and it’s amazing. It should be duly noted that I am breaking all sorts or rules as I was wearing my 2Pac tank underneath it, but we don’t have to go into the biggest East vs West Coast gangster rap rivalry of the 1990’s (and arguably of all time). But since we’re here I’ll just tell you I’m a bigger 2Pac fan, based solely on his music and poetry.
I SURVIVED ANOTHER SEMESTER OF GRADUATE SCHOOL:
On Tuesday I turned in a 15 page research paper with a very long title: “The Effects of Multiple Kinds of Exercise on Health Related Quality of Life in Female Breast Cancer Patients Actively Undergoing Systemic Treatment.” In case you were wondering, the research concludes that exercise (yoga, pilates, high/low intensity aerobic exercise, resistance exercise, etc) are both safe and very beneficial for those patients.
I also performed my final practical (Head to Toe assessment – essentially every body system on a patient in under 30 minutes) in front of my Advanced Assessment instructor on this same Tuesday. I had originally planned to move my practical date back due to the fevers but I practiced it 1 time and decided I just wanted to get it over with and I got a mother-fucking A. After that I went home, cleaned my apartment like a crazy person and then had a very long, loud, and cathartic sobbing episode that was made up only of pure tears of joy and relief. It happened twice actually, once when Lege got home and then again when I called my parents to tell them the news. Technically I have one more quiz on Friday (today by the time you all read this) for Policy class and then I am done (Hi Dr. Hoyt).
Therapy: Something I decided I needed very much. After 2 weeks of waiting/searching I was finally matched with a clinical social worker whom I connected very well with and am very happy to speak to a professional whom I am not related to. This also brings me great relief.
Boston Ultimate Formal: happening tonight 12/9 – I have been approved to drink 1 glass of wine. YOLO.
Dec 22nd: Believe it or not, (I don’t), I am turning 30. Yes I said “thirty.”
Incoming Shameless plug for Lege’s band: My very talented boyfriend, Lege and his amazing band Baeja Vu are playing a much anticipated show to celebrate the release of their EP on my birthday (Dec 22) at Thunder Road Music Club in Somerville. EVENT DETAILS HERE. I highly encourage you all to come especially if you like soul/hip-hop/funk/jazz and have any dancy bone in your body. I will be there with an entourage (they don’t know it yet, but will soon). $10 @ the door. ages 21+.
Listen to a few of their tracks on Spotify or watch their submission to NPRs Tiny Desk. Or generally just follow them on social media: Instagram
Hanukkah/Christmas: The Freedman clan has graciously offered to take this lonely jew into their already crowded abode for the holidays. Excited to hang with everyone when I don’t have ridiculous fevers.
Now-Jan 2nd: NCLEX class and studying like a lot.
Jan 3rd: send good vibes
Jan 8-14th: Lege and I go to Cuba
hit up the timeline for more dates if you so desire
**Special thank you to Cassie Wong for reading this post and convincing me that what I type makes sense and is potentially understandable to other humans.