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.

Crushed

I'm still at a loss for words after what happened this past week. I'm still trying to cope. I'm still grieving and still very bitter. My body is quite exhausted after all the stress I have taken on and everything I went through, that it's been a struggle every morning to get out of bed or even talk to friends and family members. I understand everyone is concerned and trying to find solutions for me....but at the moment I just need to breathe, gather my thoughts, and build myself up again. I feel like people are shoving things down my throat, telling me what to do and what not to do with my body...telling me I need to do this and that....criticizing me for doing this and not doing that. I'm not avoiding people...I just don't have any words and I'm still very numb. Even the tiniest things set me off now. I feel broken, my body crushed.

I found out that the reason I would have to wait 6 months to do this clinical trial is most likely because the numerical sequence found in the cancer that the T-cells would attack, can also be found in the uterine lining in women who have normal estrogen levels (which I have despite several treatments I've done). Therefore, to prevent that attack and my possibly bleeding out during the procedure, I would need to do lupron shots or some kind of hormonal therapy for 6 months to prevent the numerical sequence from showing before I undergo this type of clinical trial.

I don't know if I have 6 months. I don't know if it's worth the wait. People are telling me "oh just get a hysterectomy"...but I don't think people really understand how that was never supposed to be on the table, it will definitely have an impact on me as I'm only 24, and I'm not mentally prepared to even consider it yet. I have sent out 2 emails desperately asking my oncologist to send me any other options in terms of treatment...I have been waiting by the phone all day with nothing so far. I'm waiting to hear from the nurse at NIH to see if I can have my scans sent over so I don't have to wait another month and a half to have another PET scan (as the one I had was unnecessarily done in the end). I'm looking into other places, but it would be nice to hear back from SOMEONE before I make any decision on what to do next.

So here I am stuck in this limbo...waiting...impatiently...riddled with anxiety. Wondering how much my cancer has already progressed over the course of the past month or so. Wondering what options are left for me...if there are any. I'm so much more scared than I've ever been and trying not to let it show 24/7. I can't sleep well because of that. I'm trying to hold onto what little strands of faith I have left, but I feel like it's slipping through my fingers. I know I'm not alone but oh how I feel it, all the time now.

NIH Update

Just as I posted my last blogpost, I received a call from NIH. It was a call I was hoping never to get. Despite the screenings and tests I have already gone through...I was told I can't partake in the clinical trial after all. Apparently they need me to be on hormonal therapy with my gynecologist for 6 MONTHS before I can be on any clinical trial. So after all of the processing, tests, scans, the mental preparation of the upcoming month.....I'm told that it was all for nothing. I was ready for it and on the eve of the first biopsy with the trial starting on Monday...I'm told I can no longer do it. And the doctor even had the nerve to say "Oh I understand how upset you are".....I actually started to yell back on the phone. No they don't. They don't understand that I waited a month to hear from them after finding out my cancer was practically terminal and that this was my only hope. They don't understand that I said yes to a clinical trial knowing full well it could potentially speed along death in the hopes that I might live. They don't understand the impact this decision has had on my family and how it was literally the only prayer answered...now taken away. I am a mix of so many emotions right now and I can't even compute it all right now. I need time but I don't even have that. I have already sent a message to my oncologist to see if there is ANYTHING I can do and begged for help. I will even travel to the ends of the earth for an answer. But this is the biggest setback I've ever had and I feel incredibly hopeless.
So please disregard that last post...it means nothing now.

Iron Man Saved The Day

One day before my lymph node biopsy, and I have already had a major break down. I knew from the moment I got my schedule of this whole ordeal that this week was the first week of this hellish month. It started off easy with simple blood work, CT scan, heart ultrasound, a trip to see a dermatologist and an endocrinologist...all things I was able to do on my own. This was just the calm before the storm.

I left the house, with my mom, at 6:30 in the morning in order to reach NIH by 8am (traffic's a killer when you live out in the country and have to go into the city). I dressed for the occasion with my Deadpool socks on...the thought of "get it over with" racing through my mind. First I had a PET scan...I've lost count as to how many of these I have had in the past. For those who don't know what the protocol is, you are taken back into a room where they test your blood sugar (the finger prick test) and then hook you up with an IV. Next thing you know, they are giving you an injection of radioactive tracers and then they leave you alone for an hour so the tracers can work their way around your body. Then after an hour goes by you go and get a full body CT scan. This whole process takes about 2 hours. 

Anyway, I was getting my IV hooked up, and for some reason I started to become anxious and teary-eyed. When the technician (who looked to be in his 50's) asked me what was wrong, I told him that I was very nervous and quite scared about my upcoming clinical trial this next week and how it's incredibly risky. He then responds with "I know how you feel...my mother is having heart problems and will have to do a clinical trial"...my jaw almost dropped, and not because of his mother. First of all, you don't tell a cancer patient "I know how you feel" because 99% of the time YOU DON'T. Every cancer case is different and everyone handles it in their own way. Secondly, he was comparing me, a 24 year old facing a terminal diagnosis, to his mother who I would assume is over the age of 65...WHAT?!?!? That was enough to set me off first thing in the morning.

After I got through my PET scan and met up with my mom in the cafe for a light brunch, I had to make my way back to the radiology department where a nurse could check my veins to see if they would be ok for the upcoming trial. Now I had been told by the research nurse a few days ago that I will most likely not have any complications here and have no need to worry...therefore I didn't think much of it when I walked over to the appointment. Unfortunately...the moment I sat down and the nurse looked at the veins in my arms and hands, she told me that they wouldn't be able to put catheters into my arms for the clinical trial...instead I would need to have a catheter line surgically inserted into my neck or groin the Monday morning before I start the 4-6 hour long clinical trial procedure.

At this point I had just about had it. I pulled my beanie over my head so no one could see the pure anger heating up on my face. I literally wanted to scream. Here I am, trying to be strong, trying to be brave, doing what I have to do in an attempt to save my life...and yet it feels like no matter what I do, nothing can stop this snowball of bad luck/news from growing. I'm already trying to wrap my head around the fact that despite having a chemo port implanted in my chest, the folks at NIH want to put a picc line (an implant catheter) into my arm for extra measure. Now I have to go an extra mile to get ANOTHER procedure to get a catheter placed in my neck. Not to mention I still have no idea what the timetable is for this upcoming week, I don't know my odds, and my family is struggling with the possibility of my having complications. I immediately broke down and I wish I had a pillow to scream into.

Finally I had one last appointment for the day...an MRI. I had only had one of these before and it wasn't a pleasant experience as my ear plugs fell out half way through and the technician didn't want to stop to help. I had to lie still with the clanging noises blasting in my ears while stressing over the thought of having cancer at the age of 22. When I was brought back to get my second IV hooked up for the scan, I told the tech everything that had happened before. I was kind of an emotional mess remembering that and also because of what had happened at the last appointment. He was very quick at reassuring me by giving me a buzzer to press in case that should happen, so they could stop the scan and help me. He then put my ear plugs in and placed a rather comfy set of headphones over top. I joked saying, "You should hook up some music to these!"
To which he replied ,"No problem! What music do you want us to play?"...in disbelief I said ANYTHING!!! He laughed and asked me what genre of music I like to listen to when I'm down. I blurted out classic rock. All of a sudden I started hearing music in my ears...and through the welled up tears I started to laugh as well. The moment came when I was told the scan was going to begin and just as the table started rolling me into the machine I heard it.....
"*click* *click* *click* *click* I AM IRON MAN!!!!".....I found my strength again.

I left that appointment feeling so much better thanks to the AWESOME experience the technicians gave me. I even gave them high fives on the way out. Not only was this day ending on a better note, but it gave me new confidence going into this. This month is only going to get harder, each day being more difficult than the last. I'll admit...I'm scared, vulnerable, and still worried about what the future holds for me if I have one, but I'm going into this clinical trial with guns blazing and a determination to fight.

That being said...there's one thing I want to discuss before I end this post. In the past several days I've been getting a lot of people acting like I'm already on death's door...just so you know, I'm still kicking and walking on my own. I also deal with people who CONSTANTLY tell me to stay positive and don't stop fighting....as if I haven't been positive for the past two years! I never stopped staying optimistic and I have NO intention on stopping this fight. The one thing I can't stand more than that, is the people who are delusional or in denial about the severity of the situation. I am in a spot where if I don't do anything, I die...but if I go into this clinical trial there is also a 50/50 chance of dying as well...only quicker. Now I am hoping that I pull through and survive, but I'm not going to dismiss the feelings I have about the possibility of dying and just pretend that everything is hunky-dory. So to address these people and pretty much everyone...if you want to talk to me, then talk to me as if cancer doesn't play a role in my life. Talk to me like I'm still Maddie, because believe it or not, I still am. And especially don't tell me things like "oh I can't believe it's as bad as you say it is" or "you're going to be cancer-free soon enough"...it honestly doesn't help me to think like that. I think I might elaborate a little more on this topic in my next post...and if all goes well, I plan to write even more often this coming up week and the next. For now, I need to call it a night as I have my 4th lymph node biopsy to go to at the crack of dawn....yay....

Guinea Pig

It's been quite sometime since I've been able to say this on the blog, but....I got good news!! In the afternoon on Valentine's Day I got a phone call from one of the research doctors at NIH. They said they have a start date for the first round of the CAR T-cell clinical trial.

February 27th is when things will get underway. Although it's very good news, and this could potentially change my life if all goes well (50/50 shot)...I feel very uneasy about the whole ordeal after learning all the details.

Tomorrow I go in to meet with the doctors again at NIH and to get blood work done...woo....I did this back in the fall of last year when I was looking for answers, so this is the easy part. Then starting next week I begin the cycle of scans. I have to get a PET scan (so used to these), an MRI of my brain (obnoxiously loud but doable), EKG (the thing where they put stickies on your chest and they get squiggles on a paper of my heart and stuff), Eco cardiogram (which is an ultrasound of my heart), and last but not least ANOTHER neck lymph node biopsy (these are NOT fun and I've already had 3). And I may very well be getting my THIRD Bone Marrow Biopsy (which is incredibly painful, they don't knock you out, and I remember everything from the last two...even got sick the last time...so fun). Most of these scans and tests will be taken place over a day or two...I will be leaving NIH feeling miserable every freakin time.

Then first thing on the 27th, I go in to start the project. They will be putting 2 catheters in (one in each arm), and hooking me up to a machine that takes blood out of one arm, cycles it through the machine to take out the T-cells, and returns my blood in the other arm. Not too bad, right? Well the following three days I go in for chemotherapy....again.

It's a low dose of chemo so I won't be losing my hair or have to take steroids...I'll just feel kinda nauseous. During this time however, they are genetically modifying the T-cells they extracted, so that they will specifically target my cancer and kill it. The moment they are put back into my body, they will replicate and start attacking. It'll be an army of T-cells!

That same week I go in to retrieve my T-cells with a simple infusion. It's all over right? NOPE! Due to the likelihood that I will be experiencing "reversible but intense" symptoms, I have to stay overnight as an inpatient in their hospital for 9 freakin days. It's not as bad as the 6 month stay of a bone marrow transplant at Johns Hopkins, but I already feel like a major lab rat at NIH...only I've been promoted to guinea pig instead. Let's face it, I'm going to go mad.

And yes I know what everyone is going to tell me...read books, bring your laptop, watch movies, talk on the phone, etc....all the things I'm already planning on doing. But I'm a social butterfly...I need to be around people (preferably people who are not my doctors or nurses). Don't take this post the wrong way...I'm SO INCREDIBLY happy that I got this phone call, and that I'm starting on this clinical trial ASAP so that if it doesn't work, I can try it again but with bigger doses. I'm so thankful that ONE of my prayers have been answered and this has the potential to save my life...even if I am the only statistic for Hodgkin's Lymphoma. I will fight this cancer to the bitter end and will do whatever it takes to cure myself. I'm very optimistic and going into this procedure with a positive outlook...but it still doesn't fix the fear that I have going through it all.

I'm going to feel very scared, alone, and worried everyday of this procedure. I expect I will be writing in here daily while I'm staying in the hospital. I may even do live videos (if I don't look too horrendous). I hope my friends and family will keep in touch during those days, as I will most likely be alone in the hospital through a good part of it. The one thought that is pushing me forward is "well...hopefully this time next month, I may have found an answer, and it will have been worth the pain"....I hope it's true. So....