Nothing Equals Hope

Just thought I'd pop on real quick with a bit of an update. So after that horrific nightmare, which I desperately tried to describe in my last post, my doctor decided that he was going to modify my chemo treatment. Instead of doing the standard 3 drug sequence, he was going to remove the third drug (the one that I had an extreme allergic reaction to) and just continue with the other two. I felt somewhat comforted knowing that I could continue with this chemo regimen with two drugs that I know my body could withstand, instead of switching to drastic radiation therapy. But I literally spent the entire rest of the week frequently looking at my arms and hands to make sure they didn't turn purple again. I was most definitely traumatized.

Not only was I still getting over what had happened, my hormone levels were all over the place due to the shot I got earlier that week. It didn't take very long for it to kick in...I was having panic attacks left and right and crying at the most petty things. My anxiety was so high I didn't want to be alone in the house and was an emotional wreck when we got a snowstorm and I was stuck inside for a few days. Though looking back on this week, a lot of it feels like a blur. All I know is that my body was so overwhelmed with stress that I slept A LOT following that chemo appointment.

Before I knew it, I was walking back into the doctors for the second dose of chemo this past Friday...one week after the incident. I was dreading every minute getting there, but to my amusement, this was one of the most easiest and quickest chemo treatments I've ever had. My nurse and I were talking about what had happened during my previous allergic reaction. It was so severe it actual scared her quite a bit. It was at that moment that I just started giggling. I told her there's not much to do about the situation but laugh at it. Sure it was the scariest thing that had happened to me and my vital signs were approaching cardiac arrest levels, but there's nothing that can be done about it now. It happened and hopefully never will again. All I can do is laugh at how insane it is that despite everything my body has gone through these past two years, it's still pushing forward.

Now I have two more chemo appointments and then I go in for my PET scan to see if there is any response. Normally I wouldn't really anticipate anything with this scan, as I've never had good news come from one. However, just the other day I was driving home from a mini reunion with a few high school friends, and as I was leaving I put my hand to my neck and noticed nothing. Nothing. A spot where there was normally a firm lump...I couldn't feel anything. I went to check the marbled lump that formed on my collar bone a few months ago and noticed that too was significantly smaller. I don't want to get my hopes up for anything, especially since I've been prone to bad news. Maybe it's too soon to say anything...maybe it's all in my head....but I'm actually feeling a bit confident about this chemo regimen. A feeling I haven't felt for a while now...hope.

So say a little prayer that perhaps I may have found an temporary answer leading up to a potential remission! I am not going to stop fighting...even if it kills me. Life is too beautiful to let go of.

So I Almost Died...

This week started off as planned...and then started going south...and then into oblivion. I went to the gynecologist for my first out of three Lupron shots (thankfully I get it only once every 3 months). This is the hormonal therapy I will be taking leading up to the NIH trial that I wasn't ready for last month. I have already had this shot before to try and salvage any fertility during my first chemo treatment, so I already knew what to expect. It's an intramuscular shot that they normally give you in the butt. This time they tried to go up a little higher close to the side of my hip so my butt wouldn't hurt every time I had to sit down and drive somewhere. Still, about an hour after receiving the shot, my hip area was incredibly sore. I mean it's a BIG shot...no joke.

                                                   "I got shot in the buttocks"
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:

But instead it looked like this but PURPLE all over my arms and both sides of my hands:

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.

A Little Ray of Hope

After not hearing from my oncologist for almost a week, I decided to schedule the earliest possible appointment to speak with him face to face. This meant waking up at the crack of dawn to beat rush hour traffic for an 8:30am appointment. I would be his first appointment of the day. I showed up incredibly exhausted after spending the previous evening walking around DC (it wasn't even the original plan, but I wasn't going to pass up hanging out in the city with friends). Anyway, the nurse called me in, and after taking my vitals, she put me in the room to wait for what seemed like ages. I probably would have fallen asleep on the exam table if it wasn't completely upright in chair position.

Eventually my doctor came in and apologized for the delay in response. Apparently one of the oncologists at another clinic dropped out and he's been overworked (he normally works at two locations...now 3...and does hospital rounds). According to the nurse he's been in demand. However he said he's been able to look over everything on my case, and he has looked at other locations to see what they have to offer. Sadly the only other options are other immunotherapies as well as CAR T-cell projects. However he said since the immunotherapy I tried this past fall/winter didn't work at all, it significantly decreases my options in that form of treatment. He says my best option is doing the clinical trial at NIH in six months. This means I will be on some form of hormonal therapy (a shot in the tushie) until I resume my trial (assuming I still fit the protocol and am healthy enough)...fun.

However I'm not cutting treatment cold turkey...totally out of the question since this cancer is determined to see me dead. My doc offered me two options. There is one more chemo I can try which is similar to the chemo I did at the beginning of all this. It's called GVD and it's less toxic and symptoms are mild if any. I would go in once the first week, once the second week, and rest the third week...this is one cycle. I do two cycles and do a PET scan to see if it works. If it shows that it is shrinking any of the tumors, or stabilizing it at the very least, then I would resume this treatment until one month before my clinical trial. If not, then I would need to do radiation (something I've been trying to avoid). Not only do I have a serious phobia with radiation as it is (no idea why), it will also be every single day for 4 weeks...that's a lot in terms of money and energy. Another reason I'm not crazy about it is it will be covering a large area; meaning I could only do this option once. If for some reason I would need radiation down the line...I would no longer have that option besides pinpoint radiation. So I'm a bit hesitant on this idea and hope that the chemo works. Fingers crossed it does.

                                                                      Fourth time's the charm right???
All in all...I guess it's good news that I will definitely be trying for the clinical trial in the fall, and at least I won't be the guinea pig anymore as I'm sure they will do a study on someone in the meantime. I have the comfort and confidence in knowing I will most likely live another 6 months at the very least (knock on wood)...I just hope I can conserve whatever energy I have as fatigue is both a major side effect of both the chemo and radiation. But now I have a plan and I will definitely try to stick with it. Oh and should something go wrong, I now have my doctor's personal phone to call after hours if I have any questions or concerns. I feel a little more relaxed and have 6 months to prepare my mind for this clinical trial instead of feeling stressed and rushed into everything. I can finally breathe a little deeper.

                                               My deep breathing exercises...
So starting next week, I get my first shot on Tuesday and my first go at this chemo on Friday. The one take away from this I have is that there is still some hope for me yet. If all goes well, I can still do the trial. Sure it's a long ways away, but I'm not giving up the fight.