Then to top off the pain in my hip, I've been dealing with increasing muscular lower back pains from God only knows what I did...something obviously stupid. Anyway this pain has been keeping me up at night and only happens when I'm sitting, resting, and sleeping. I've dealt with this EXACT same pain before when I had shoveled too much snow last year after giant blizzard, and when that happened the doctor gave me some pain meds and told me I had to wait it off. So after I did some routine bloodwork, I went upstairs to urgent care expecting the same thing. This time however I got a new person and she looked at my chart and told me that because she noticed I had cancer, she wanted to "rule things out". She wanted to have me do more bloodwork and a CT scan...it was 9:30pm. I was like OH HELL NO!!
I already felt uncomfortable doing any kind of scan, as I had already underwent a CT, PET, and MRI all in one week at NIH. That's A TON of radiation and I didn't have my doctors ok for this. I told her this and she kept insisting that she knew better and that it was the only way I'd get relief. Considering I was tired and had been waiting for her from 7pm to 9:30pm, I just wanted to get out of there. So she gave me minor pain meds (which didn't quite work all that well) and I bolted out of there.
Two days later I was scheduled for my first round of my 4th chemo treatment. The purpose of this chemo is to try to reduce any progression and any current tumors between now and when my clinical trial starts up. I had been given the choice of either chemo or radiation, and I chose this due to the fact that I'm not crazy about the idea of radiation as it's actually one of my phobias. I was also told that this chemo regimen was very similar to the first chemo I did (the only one to have the biggest response back in 2015) and was less toxic compared to it. So I figured it was definitely worth the shot and if after two rounds of it there was no improvement, I could switch to radiation where I'm pretty much guaranteed a chance at a temporary remission. So I went into this treatment not thinking much of it. Just get in and out...(granted the whole ordeal was supposed to take 3.5 hours).
After getting hooked up through my chemo port, and pre-meds were taken, they got the ball rolling. First drug took about an hour. No big deal as I spent that time watching a little bit of the news and doing connect the dots. Second drug was practically a breeze as it lasted only 10 minutes....boy do I wish all chemo treatments were that fast. Then all of a sudden I see them hooking me up to this big reddish-orange bag of what looked like freakin Fruit Punch!!
I was rather amused at it and watched as it took FOREVER for it to slowly go through the tubes up to my port. I actually was encouraging it as if watching a race since it was the last drug in the sequence and then I was homebound.
However what seemed like the fun drug turned out to be the drug from hell. Not even 5 minutes passed when all of a sudden my connect the dots were making more little dots all over the page. They were multiplying and I felt flushed. I looked up and started seeing stars and immediately pressed the help button and with my last full breath screamed for my nurse in desperation. This had happened before while taking a previous treatment...twice. So I knew the drill. Just keep trying to breathe, focus on the nurses as they took me off the drug and hook me up to an oxygen tank, and most importantly try not to panic. But then I started losing function of my body...my blood pressure jumped to the high 150's, my oxygen dropped to the mid 50's, my head started to want to pass out and everything was spinning...I wasn't getting enough air and I'm surprised I stayed conscious at all.
Then one of the nurses said "oh my god, look at her arms!"...and with all of my will power I managed to get my head up long enough to see it...the most disturbing skin mutation I had ever seen had appeared. My hands and arms started to form a splotchy bright purple rash under my top layer of skin. Apparently it was also on my face. Now if it had been some cool looking X-men superhero mutation I might be ok with it. Something like this:
Or like this:
Almost immediately panic set in. The first thought was, "oh my god...I'm dying". Then when I started to recover from the oxygen mask my next thought was "oh my god...this isn't going away...it's permanent!". Just then the nurse took hold of my arm and was telling me that it was starting to fade away. In my hysterics, I couldn't see it for myself and I didn't believe her at first. It wasn't until about 5 minutes of my mixed crying and deep breathing that I noticed it was starting to slowly disappear. Then the thought processed changed to "I need this to work. I don't want to do radiation. Please tell me there is something that can be done." One of the doctors on site told me he got in touch with my oncologist, who was at a different clinic at the moment, and said he was going to give me a call back. He also said that if I didn't hear from him, then to call him back after 12:30 pm the next day. I still haven't heard from him and by the time I post this I'll be picking up the phone to call him.
I'm desperately hoping to hear that something can be done. I don't want to hear the word radiation. Not only that, I'm still incredibly traumatized by what happened and keep looking at my hands and arms every other hour to make sure they are the translucent pale skin they always look...bleh...stupid Irish genetics. Thankfully the only reaction I've been battling is fatigue...I basically spent the whole day sleeping yesterday when I got home. I don't know what today has in store for me in terms of plans or symptoms...but I'm going to try to remain as upbeat as possible. Wish me luck on my phone call...
UPDATE!!! My doctor told me that I will be continuing chemo treatment just not with the third drug. So I've still got a chance that it could work without having to kill myself or undergoing radiation. Yay. lol!! Your amazing.
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