This last week has been nothing but a whirlwind for me. Saturday the 16th was my dreaded day three following my first treatment and the symptoms did not disappoint. It is hard to truly explain the progression of symptoms. One of the things that i struggled with the most right out of the gate was extreme intense bloating and cramping in my abdomen to the point were the level of bloat was baking it difficult for me to move. I blame this on the shot i was given to help protect my ovaries. When i say i have never experienced anything so intense i mean it. No amounts of medication or heat could sooth away the discomfort. Not to worry new symptoms started to surface going into the afternoon, my skin hurt, EVERYWHERE. My skin and muscle tissue over my entire body hurt to even be brushed against by my fingertips, let alone... sitting, laying, clothing, all of it was excruciating. The build up of discomfort and total exhaustion left me in bed early in the afternoon with tears of frustration. It was a gorgeous day outside and there i was laying in bed feeling completely useless. I knew i was doing my job, allowing my body to rest and fighting cancer but i did not want to accept what i was sacrificing in that moment.
Around quarter of 10 at night i hit a bit of a breaking point and called the cancer center's on call physician. I was told that the full body pain was from the Neulasta Onpro and one of the best ways to counteract the discomfort was to take Claritan.. naturally i did not have Claritan on hand so off Tyler went after 10pm in search of some! I took Claritan and went to bed hoping for the best, thankfully the next morning most of my symptoms were tolerable. I did have extreme fatigue and sensitivity but to be honest most days i am used to living with chronic headaches, muscle and joint pain from chiropractic issues so i try to compartmentalize these things and push forward with things i need or want to get done. In other words something needs to be at a pretty severe level before it is going to stop me from being productive. I realized quickly as the day progressed that i was not at a level where i could tolerate running errands and ended up staying at home while Tyler ran all of our errands. I laid low the majority of the day relaxing without feeling too completely miserable.
Monday started out pretty well, despite easy fatigue i thought i was feeling pretty good. I ran errands and got a few things accomplished while Tyler was at work. One thing that i noticed throughout the day was the onset of the metallic taste in my mouth as well as a couple of sores on my tongue despite doing everything i could to prevent them. When i went to take my 1st bite of food from a silver metal fork at dinner time i was revolted by the overpowering taste of metal, switching to plastic solved the problem...mostly. That evening i decided it was time to tackle some of the piles of paperwork i had been putting off and dove into the office. After a couple of hours at my desk i realized i had developed an excruciating head and neck ache. I took a few ibuprofen and laid down on the couch, it did not take long to realize i was freezing. Goose bumps shivering freezing despite my heating pad and blanket. It was then that it dawned on me... fever.. my stomach curled into knots. Memories of my chemo class started swirling around in my brain, i remembered being told any temp of 101 or higher was to be considered an emergency and to call right away. I also remember being told to avoid the emergency room at all costs and knew i would have to go there because it was after hours. My stomach cinched in knots i took my temp (mind you 40ish mins after meds at this point) and i was over 101. I grabbed a couple of cold packs, called Tyler to let him know i had a fever and settled in on the couch. I knew Tyler would be home from work soon and decided to monitor my temp to see if it would go down before calling.
Tyler naturally was extremely worried when he got home, it is hard to describe genuine fear but it was written all over his face. The docs at the cancer center had really drilled home the dangers of fever and what it could potentially mean, especially considering i just had a port placement. My fever climbed more, almost to 102 so i called the online provider at the cancer center, luckily my oncologist was on call, she asked that i go to the er so that my blood counts could be checked. She was going to call ahead and let them know that i was coming and why. Of course it is pouring rain, because why not... HAH, Tyler and i load up into the vehicle at 9:30pm to go to the er. I was feeling so cheated honestly, i thought i was having a wonderful day until in the blink of an eye it changed. A simple low grade fever means a rushed trip to the emergency room for me now.
When we arrived at the er it did not look extremely busy, i masked up, purrell.. you name it. The fear is real once you are immune compromised to even catch a simple cold. I sit down to check in, i explained why i was there and that my doc had called ahead. (the woman at the desk is staring at me blankly) Instantly i thought to myself, well this is going to be a good experience. I am then told that Tyler could not wait with me in the waiting room, i asked if i could wait in my car and be called in due to being immune compromised. The receptionist was instantly irritated and said "well no one is going to come get you", Tyler was the most irate i have ever seen him be in public. The waiting room is partitioned into tiny receptacles with three chairs in each one, i was to sit with two other people in one of the areas. Me being me i told Tyler not to worry and had him go out to the vehicle, i refused to cram in near the other patients and stood against the wall. After some time i glance down and wallah ... dried blood on the floor! I asked the other two patients how long they had been waiting and they stated it had been hours. I knew i was not about to sit there for hours and potentially catch something else to worry about. I went to the front desk and told the woman to take my phone number and call me when it was my turn. I did not leave an option for anything else and went out to my SUV. If i was going to wait for hours i was not about to stand in dried blood while doing so!
By the grace of god i was called in about twenty minutes later, Tyler and i both went in as we were told previously he would be able to come into the room with me but could not wait in the waiting room. I am sure you will be surprised to be told that this was not true and Tyler was sent back to the vehicle to wait for a call once the doctor confirmed whether or not he could come in. Picture all the running back and forth in the down pouring rain! I am brought to a room and told to change, moments later i am having my blood drawn. Mind you i am still working on not getting nauseated every time i needle appears. If there is one thing i can do well is advocate for myself, i explained my aversion and what helps me cope with the situation. I ended up having to call Tyler myself to tell him that he could come in as it just simply was not happening and i got sick of asking for them to make the call. The doctor and a gentleman with a laptop were in the room when Tyler arrived. I remember the interaction with the doctor not being very confidence boosting, i hated feeling like i was there wasting everyone's time.
So with vitals checked and blood drawn i thought i was in the clear, NOPE the nurse comes in with 4 large bottles for blood cultures and explains needing to draw blood from two separate locations. I am mentally spiraling at this point as she also mentioned an IV. I told her that one of the blood draws needed to be combined with the IV as i was not going to tolerate 4 needles back to back to back. The 2nd blood draw took FOREVER i do not know if the nurse used a needle too small or what but it did not do me any favors with the length of time she spent pulling blood. I told her i needed a break before the 3rd attempt. It was at that point that the triage nurse came in. I cannot stress enough how thankful i am for this woman, she had me laughing the remainder of my visit, she put both Tyler and i at ease and just made the experience 10000% better.
So after the blood draws we were left waiting for a bit, i learned it would be a late night and sent Tyler to McDonalds before they closed as it was going on 11:30pm. I am sitting in the bed and i swear i keep catching a whiff of poo.. at first I decided it must be coming in through the cracked door. More time goes by and i start to investigate... to my absolute horror the smell was coming from MY bum area. This is funny now but instantly i am like OMG was i so worked up about the needles that i somehow pooed myself and didn't realize?!? Has anyone else smelled it?!? instant embarrassment, i'm getting up wires in tow checking my pants nothing, sniffing nothing... i go back to the bed...nothing. I sit back down, Tyler arrives with dinner, what does one do? Ask their partner to check, that's right picture it! Tyler sniffs my bum, the bed, and repeat. Well...folks it WAS the bed and NOT my poo. So now i'm sitting on my jacket on the bed and i can STILL smell the odor, Tyler is trying to convince me it is okay to day something. I'm looking back at this story now and it is hilarious, but what if i was truly ill or injured and was put in this odorous bed! Our nurse came in an i told her which resulted in us all laughing and me instantly getting a new bed. We joked that i would be the new hospital "sniffer". Not long after i had chest xrays completed once my covid testing came back negative, more waiting, a urine test, more waiting. Around 1am a nurse came in to give me fluids, just before 2am a new doctor came in and told me that all of my tests came back fairly normal with only a slight elevation in my white blood cells. The blood cultures which would determine if there was any form of blood infection would take several days.
We were discharged just after 2am and went home, i basically fell into bed thinking i would fall asleep. NOPE i laid there with the chills shivering for hours despite meds, i gave up in the morning and got up to lay on the couch. Tyler too was up all night and did not want to leave me home with a fever in case i needed more medical care so he stayed home. I touched based with my oncologist and piggy backed tylenol and ibuprofen for the day which helped keep the fever low. Tuesday Consisted of me sleeping almost all day and just profusely sweating. It was an improvement as i knew it meant whatever i was fighting was working its way through. I ended up waking up on the couch at 10pm feeling great but drenched in sweat. I showered and went to bed thinking sweet, i had beat this thing! I woke up Wednesday morning feeling achy and bam still had a low grade fever. Luckily at this point i took tylenol and my fever never returned. Wednesday i kept very uneventful trying to insure i would not have a fever for my impending trip to Boston the next day for three biopsies.
One thing i forgot to mention was that i had a highly anticipated appointment at Madelines Hair Replacement to start the process for my real hair wig on Tuesday. I had to call and reschedule for a 2nd time, i am hoping that i still have my hair so that they can try and match it by when i go next Wednesday.
I have had a lot of people ask me what events are happening for fundraising and how they can help, followmegsfight.com includes donation links, but most importantly there is a direct link to my Facebook group! If you join the group and click events there is a virtual calendar of what is happening!! I love each and every one of you, and i cannot wait to be back in a place where i can return the favor.
Keeping the faith,
Meg
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