The last 7 days have been some of the most uncomfortable of my life.
I had my 2nd Ipi Infusion even though 2 days before I had been having low grade fevers and flu-like symptoms. Things only got worse after the infusion.
We thought that my fevers would end with my interferon treatment. When I was treated with interferon, we were told fevers and flu-like symptoms are an expected side effect. Fevers and flu-like symptoms are NOT listed as a common side effect of Ipi, and my healthcare team (and all the research) do not list them as primary symptoms. Ipi is more notorious for causing serious GI issues (which you may have read about in my Update #11 – All about Ipi ). Welp, it turns out that I am just a fucking special flower. For the last 7 days I have had unexplained fevers. For 2 of those days (the 2 days before my 2nd Ipi infusion) I was having low grade fevers (no higher than 100.2°) and was still able to function as a human in society. By Wednesday evening and the following 4 days I have been suffering from high fevers (up to [oldies]103.3°) that ravage my body when I don’t have ibuprofen in my system. What’s worse is that when I was on interferon, the fevers would resolve after the first dose of antipyretics (tylenol or ibuprofen). The fevers I have now immediately come back after the ibuprofen or tylenol has been flushed from my system. Sometimes recurring as soon as 4 hours after taking them. I have had a high fever every single night and every single morning.
On Wednesday night my fever went up to 102.5° and Lege and I were really scared so we called the on-call oncologist. lolz. I never noticed how funny those words are together until I typed them just now. Dr. Lawrence called us back within 10 minutes. He advised me to continue taking ibuprofen around the clock and to touch base with him later on, or he would call me if any of my blood cultures came back suspicious. Friday night and Saturday morning I was sporting fevers in the 103’s and we had had enough so finally Dr. Lawrence suggested we go to the MGH emergency room for more testing. Again all the tests ruled out any chance of possible bacterial infection. This leads us to believe that the Ipi infusions are causing my immune system to be so revved up that it is causing my high fevers. My labs did reveal that my WBC and platelets were low (2.55 K/uL and 78 K/uL respectively) but I guess this is not a big deal. I was also pretty depleted in the electrolyte department despite chugging Gatorade whenever I could get my hands on it.
A trip to the MGH Emergency Department
My trip to MGH ED was one of the most efficient I’ve ever had. They did a great job getting me in there and seen right away. I met a ER Doctor, a PA, and they paged Dr. Lawrence. After all my cultures and blood work came back negative for infection again, we all concluded it was Ipi’s fault. They tested me for influenza, which is where they stick a probe up your nose and it was extremely uncomfortable. I realized just now that they forgot to repeat my liver tests because I remember Dr. L wanted to see if they had gone back up but I didn’t get those results…. Also, initially I was worried about meningitis or an autoimmune meningitis because my neck was really stiff, sore, and I had strange localized headaches that I’d never had before. However all these symptoms would go away when the fever went away so everyone concluded it was probably not meningitis and I didn’t have to have a spinal tap which I know are extremely unenjoyable. So Dr. Lawrence started me on the dreaded prednisone today. I have said before that I am terrified of prednisone because the side effects on taking systemic corticosteriods long-term are pretty awful. However I am glad to finally, hopefully make these fever stop for good. Prednisone is prescribed because it should hopefully blunt my immune response and stop my fevers from occurring. I am really sick and tired of feeling like death. Not to mention I am extremely anxious about all the school work I was unable to do over the break.
cue Katy Perry’s “Hot N Cold”
When I had the fevers I would have fully body chills and rigors (intense and uncontrollable shaking). I would be wearing multiple layers of sweatpants and sweatshirts under 3 heavy blanket with wool socks and still be shaking and freezing all over. I had to keep no less than 3 towels and 3 t-shirts next to my bed because when my fever would break (I would wait to take my last dose of 600 mg of ibuprofen before bed so I could sleep though the night, which is silly in retrospect) I would get intense night sweats and would wake up 3 times a night completely drenched in sweat and would have to put towels down on the bed, dry myself off and put a new t-shirt on and get a new blanket. Again this happened at least 3 times a night. By the morning, my fever would go up again in my sleep and then I would start shaking and needing to add layers of clothes, but was so cold and sick most of the time I couldn’t bring myself to even bring one of my toe’s out form under the covers. One night I weighed myself before bed and then again the next morning and I had lost 2 lbs of water weight from all the sweating. In addition to theses symptoms I was also having neck/back and muscles aches, pressure headaches where it hurt to move my head at all bend over, or even walk, as well as general fatigue and malaise. Also when my fevers got really high I started to hear this humming/buzzing noise somehwere in the room. it sounds like a bee was stuck between our window and the screen and it would happen in bursts. It also affected my visions, like my peripheral vision would get fuzzy for a split second when I heard the buzzing noise. Very strange and very scary.
Based on emails that my parents sent and communication with other people that saw me during Fever Week, people said “I didn’t complain.” (WOW!) When socializing is over and my ibuprofen drains from my body, Lege was the only one there who saw the extent of my pain and illness, and I know for a fact that I complained repeatedly to him, a lot. And he took care of me for the most part, except for one time when I was feverish and needy he went to “meditate” in bed and really he just went to sleep, but I do not blame him. The kid deserves an award of great honor for dealing with me during Fever Week.
Lege has been a huge support, throwing blankets on me, calming me down when I get hysterical and start “telling stories”, taking me to the ED and dealing with and communicating to all the doctors/my parents/his parents when I was unable to, feeding me when I’m able to get food down, getting layers and putting them under the covers with me so I could eventually bring myself to put them on, and comforting me when I was losing my good damn mind. He even tried to lead me through some meditation at night when I was most anxious but that lucky ass has been gifted with falling asleep as soon as his head hits the pillow so it only lasted about 2 minutes. Every night before falling asleep I would have delirious dreams/hallucinations where I was in this purgatory state of not quite being asleep but not quite being awake either. I would try to distract my brain by meditating but my brain was turning into scrambled eggs. At one point I was purgatory fever dreaming about seeing a bright teal light in the distance and I felt myself floating towards it. I went willingly at first, until in my half dream state I thought, “maybe this is heaven” and then “holy shit I’m not ready to die”, which would allow me to catapult out of fever dreams back into reality and finally sign from relief. I woke up Lege to tell him and then we realized how hilarious this was that a delirious schwam would make “heaven” a bright shining teal light. This happened 2-3 more times. #tealsquadforactuallife
Sorry if this irreverent story offends anyone, but all I can do is laugh about it right now and Lege understand me and that’s important.
This year the Freedmans (Lege/A2’s family) hosted my parents, Sadie (my family dog), and me for Thanksgiving at their house in Carlisle. Karen (Lege’s mom) slaved away in the kitchen and produced a wonderful thanksgiving spread. I have been lucky enough to avoid any nausea/vomiting for the most part and am able to eat when my fevers are not too high so I was able to enjoy it and the delicious pies made by Edie (Lege’s Aunt) and Casey (Lege’s sister). David (Lege’s dad) did all the cleaning and refused help as usual so we could all relax and enjoy our full bellies. I was able to take lots of ibuprofen during the day which would blunt my symptoms and bring my fever down to 99-100 so I was able to enjoy most of the festivities involved. I spent the night there so we could celebrate Casey’s birthday the next day. We went to a cool museum featuring SHOES, and saw the movie Moana, which helped me have less scary fever dreams that evening. Lege’s family was very accommodating to me and worked around my fevers which was amazing and super helpful.
Who have continued to support me and advocate for me without overhwhelming me during a time where they probably feel more helpless than ever. They encouraged me to call Dr. Lawrence and have helped calm me down and figure out a plan of action, whithout scaring me too much. I am forever thankful for my parents and that my parents and Lege’s parent get along so well, because I know not every is as lucky as I am. Also it doesn’t hurt that my dad is an ER physician and my mom a clinical social worker.
Thanksgiving pictures courtesy of David and Karen ❤
Other things/humans I am thankful for this week
–I have not been itchy since last Tuesday
-I have not had any GI issues (especially considering all the ibuprofen I was taking) and also colitis still sounds worse
-That my cancer has not progressed
-that it’s possible my fevers may a good prognostic sign that my T-cells are activated
-I have somehow been able to maintain my weight the past few week
– That I get a few hours each day to feel somewhat normal
-That my oncologist will return my phone calls quickly even if it’s 10:30pm the day before thanksgiving or a Saturday morning
-That my healthcare team actually cares about me
-That I was able to take a standing shower today without fear of shivering for 3 hours afterwards
-That I’ve done well in school so far and that my teachers continue to be flexible with me about due dates
-that you guys won’t care that I didn’t proofread this blog post because I have too much work to do to edit it the way that I want to
-that these blog posts make a difference in other peoples lives (so I’ve been told)
-that you are all willing to listen to my story without judgement
-that my heaven may be teal afterall
– that I am still receiving so much love and support from family and friends who also don’t ask for much in return (and I can’t wait to return the love once I get my head above water, which I will, one day, but not in 2016).
I don’t know if Dr. Lawrence is going to end my Ipi infusions because of the fevers, but I am sure there are going to be some changes in my treatment plan. I have an appointment with him Monday morning, so I will know more then. I am no longer allowed to take Ibuprofen because it could interact with the prednisone, but I am allowed to take tylenol. I took my first dose of prednisone and Tylenol this morning and my fever has gone down for now so we’ll see how I feel in 6 hours. Here’s to hoping the fevers start to go away for atleast a little longer than a few hours. Now that I haven’t done any work all week, I’ll be trying to do that while I feel good and will try to update briefly again when I can.
love you all,
(though febrile schwam loves you too).