Acceptance Does Not Mean Defeat

Yesterday I went to what may be my last chemo for a while. About three days ago I was getting ready to go to bed and noticed that my collarbone felt somewhat strained...not hurting but like something was pulling on it. I ran my fingers down my neck to the location only to find fear and disappointment. One collarbone seemed raised like there was a mound sitting atop of it. At first, I thought I must be imagining it as it didn't feel like the usual marble lumps that I've had in the past, but as the fear settled in I could tell something wasn't right.

My first instinct was to try to rationalize it by saying I didn't know if it was something leftover from last month's growth and it's slowly fading away. But wouldn't I have felt it then? I'm not sure. All I know is that anything I feel at this point, with the PET scan just around the corner, is not supposed to be there. At chemo, I had my nurse feel it and she confirmed something was definitely there. We continued chemo as usual but I sense it will be my last. My oncologist was very clear the last time I spoke with him that if I'm not in remission by the time this PET scan is supposed to happen, then transplant is no longer an option. My body is rejecting chemo all together which leaves me no other option but a clinical trial which is still in its early phase with little odds and few statistics. Now I know I'm not supposed to pay attention to statistics, but the last time NIH (the facility doing the trial) gave me an option (immunotherapy) it had absolutely no effect on me. Why should this option be any different? People have actually died from this clinical trial and it's still very risky.

I sent my oncologist a desperate email 2 days ago with my concerns and begged him to see if there were any other viable options that could give me the same reaction as this past chemo and can still make transplant a possibility...but I am worried that this email will just return with a giant no. I'm still waiting to hear back from him. In the meantime, I've already taken the first steps towards this clinical trial and set up another appointment to resume the hormonal therapy that I stopped back in the spring when I saw good results from the chemo. I was really hoping to avoid going back on it since I gained 30 unwanted pounds alone from it.

Yesterday after chemo my strength collapsed and I broke down very hard from it all. I feel like this is all my fault. I know my doctor is going to tell me I should never have gone travelling to see my family because then this may have been avoided. I could be recovering from a transplant right now instead and looking towards at least a temporary remission. But instead, I didn't and these are the consequences I have to face. I still don't regret the decision I made because mentally it put me in a better place and I needed to see my family who have had my back through all this overseas. I needed it...but was it worth the risk? I don't know anymore. I feel like I just threw my life away and I didn't mean to.

That being said, although I accept the consequences of my actions, it doesn't mean I'm defeated. If I must abandon the transplant, then I will use whatever remaining power and strength I have towards this clinical trial. I have no idea if it will work or if I will survive it...but I won't go down without a fight. I want life. I want to move on. I want to finish school. I want to have a family of my own someday (which is something I've already fought against cancer through fertility treatment). I will not throw my hands up. The anticipated news still stings and God knows I've cried buckets since yesterday. I know there are going to be people siding with the doctor saying "this is what you get" and I respect it. But to those who still support me, I embrace and love you all.This fight doesn't end here and whatever happens, I will never stop until all of this is over...whether it's my last breath or a cancer-free life.

When I was in France visiting the Pantheon, I came across a statue with the engraving "Vivre libre ou mourir"...live free or die. I was so empowered by this and it's something I intend to go forward with this in my head.

A Metabolic Miracle

Yesterday was truly an eventful day. To start off, I woke up to the sound of La Marseillaise playing on the television. It was Bastille Day, so I dressed head to toe in my blue, white, and red. My nails still had the lingering colors from the 4th of July. I was completely overwhelmed with fatigue, despite sleeping for several hours, but nothing would stop me from getting out of the house to meet with my friend Tara. I had reason to party!

On my way over to meet up with her, I got stuck in rush hour traffic, literally moving at 2 mph. Listening to the soundtrack of Midnight in Paris, I started tapping my fingers on the steering wheel. A pang started increasing on my middle finger where I was pricked before my PET scan. The stupid nurse at the time tested the very center of my finger which was now bruising and super sensitive. Suddenly, I started to wonder if the results had come in yet. They say no news is good news, but the anxiety I felt was increasing. In the standstill traffic, I eagerly commanded Siri to call my oncologist's office on speaker phone.

After a few rings I got a hold of a nurse and after explaining to her my reason for calling, she asked for my medical record number. As I started reciting my memorized label I heard a click and silence on the other end. She hung up on me. 

Thinking she might have accidentally pressed a button, I commanded Siri again to redial. A few more rings and a different nurse answered the phone. Before I could explain what happened she told me there was another patient ahead of me and to hold. Hesitantly I said ok...my mistake. As I sat there in the sluggish traffic with the agonizing elevator music playing on a loop, I started to notice a GIANT rain cloud creeping over me. I literally sat like this for 30 minutes before anyone bothered to pick up my line...only to be told that my oncologist wasn't in his office today and they already left a message. At that moment the downpour hit.

By the time traffic started moving again the thunderstorm started to calm down. When I finally met up with my friend, all that was left from the storm was the muggy humidity. Despite the heat, we went out for lunch and toured a local library for books...I had to get some more material and inspiration for a book I'm trying to write. After I dropped her off at her house and was about to head home, I decided that since it was the 14th of July, I would treat myself to a crepe at a little french restaurant...as is tradition in my family.

It was around 7 pm when I started heading home when, in the middle of Edith Piaf singing in the car, my phone went off. It was a call from my oncologist, Dr. Oh. There wasn't anywhere to pull over and talk, so I had to hurry and find a parking lot to listen to his voicemail...it couldn't possibly wait until I got home. I came up to a building that used to be my old pre-school, pulled into a parking space, and frantically reached for my phone. Dr. Oh's meek voice excitedly came over the car speakers...

"Congratulations Miss Madeleine! The PET scan results are back and although the lymph nodes are still there and haven't changed much, there is no longer any cancerous activity. It's a metabolical success!"

I wanted to scream with excitement! I never thought I would hear this. It's a temporary remission but remission nonetheless!
"I will contact Dr. Meade at Johns Hopkins to see what to do to begin the transplant process and will be in touch with you when I hear from him. Enjoy your weekend!"

I was so excited that for the remainder of the ride home I had the windows rolled down and screamed "I'M CANCER FREE!!!" every other mile.

It was truly the best Bastille Day I've ever celebrated. Not only do I get to look towards a possible finish line, but now I get to bypass the clinical trial altogether. Admittedly, I'm a little disappointed since I did this stupid hormonal therapy for absolutely no reason. Now the real battle begins. These next two months I will be mentally preparing myself for the battle of a lifetime. I will most likely be jumping straight into my transplant the day after I return from seeing family in France. I will be inpatient in a hospital on my birthday and spending Thanksgiving and Christmas in Baltimore, fighting to stay alive. 

I don't know how many visitors I will be allowed to see (let alone the fact that my friends live far away and are busy). I'm also struggling to find a/some caregiver(s) for the 6 months I will be staying in Baltimore. Neither of my parents can financially afford to take off work for that long amount of time and both my siblings are in school....but I will ultimately cross that bridge when it gets here. For now, I just need to focus on my strength physically and mentally. The finish line is there and I can feel it. I want to move on. Whether it's life or death...I don't even care, as long as I get there. My will to live has been renewed since my last post...so despite the odds, I like my chances.

Active April

So this past Friday, I started my second cycle of this chemo regimen. Woohoo!! At the end of this month I get my PET scan and see if it's working. I'm having very good vibes about this treatment (despite the horrific mess that happened on day one) so I'm hopeful that I'll get good results...for once.

But that's not the only thing I've started. Apparently, I've been gaining weight like CRAZY this past month. Now most people think cancer patient=sick person=losing weight....and while that may be the case for some people, especially before they are on treatment...other people tend to gain weight during chemo. This is because of the steroids that are given to you as your pre-meds. For me they are these two little green pills I take and they taste like chalk in my mouth. Thankfully my nurse gives me some apple juice to take them so the taste doesn't linger...bleh!

These little green pills are not just monstrous in gaining weight, but they also seriously mess with my sleeping schedule. The first night after my treatment, my body doesn't know what to do to get to sleep. It's very difficult to describe to someone who hasn't taken steroids before. The best way I can describe it is, my body feels like it just ran a marathon and it's tired...but at the same time my mind is awake and I feel like I have a huge rush of adrenaline that I can't bring myself to a state of calm long enough to fall asleep. I've never really had coffee before, but I would assume this is what it feels like to consume 3 cups of coffee just before bed after being awake for hours.

In addition to this, I found out another contribution to weight gain is that my last treatment, the immunotherapy I did this past winter, caused my thyroid to freak out and now it's under-working. Originally my doctor thought it might bounce back, but after doing more bloodwork, it's been confirmed that I have hypothyroidism, which if not treated can cause fatigue and weight gain. DOUBLE WHAMMY!

So facing this new month of April, I've decided to take some action towards that. Even though chemo is quite a bother, I've come up with an "Active April" workout routine for the entire month as well as taking daily medication for my thyroid. Hopefully by doing this, I'll see some improvement and get back to where I was originally. This month is definitely going to be a busy and challenging one, but at the same time I feel confident about it. Just gotta take one day at a time. Eventually...I'll get there...to that finish line.

Click here: https://www.youtube.com/watch?v=hUgmp2STrNg

GoFundMe: https://www.gofundme.com/maddies-travel-fund

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.

Congrats! You're A Mom!

After my procedure last week I entered my healing and rest phase. I'm still technically in that phase, but it's nowhere as bad as what it was originally. Two days after my procedure my stomach had swelled quite a bit and I felt like Violet from Willy Wonka...minus the blueberry of course.

It's called Ovarian Hyper-Stimulation Syndrome...otherwise known as OHSS. It's fairly common after this procedure and I had only a mild state of it. Things seemed to be settling down after a couple days until Sunday evening rolled in. I woke up in the middle of the night with absolutely crippling lower back pain. However, this wasn't a new pain I was experiencing. I have been dealing with this back pain for the last 2 weeks, but kept putting off seeing someone about it because the fertility treatment was my first priority. I know...stupid me. I had only myself to blame for the complete agony I was facing. And although this back pain only lasted about an hour after taking some over the counter meds and a FLAMING HOT bath at 4 am, it still kept plaguing me and my sleep.

So I made the decision to go to Urgent Care the next day since my usual doctor was unable to see me. They decided to run some tests to see if I had any infections and checked my back to see if there was any bone problems. I told the doctor that this had been ongoing and it only happens late at night for about an hour then goes away. They figured it's not the cancer or anything but probably something to do with my muscles. (Seriously I cannot express how painful it is when it comes...it's almost labor pain, it's that bad).

Then the doctor got the results of the urinalysis and came back looking quite concerned. As she closed the door behind her she started off by saying how everything looked normal and that there were no infections or anything. They scheduled an appointment with my primary doc and gave me some pain meds in the meantime. Then she told me something else came up on my tests. It was then when she dropped the P-word: Pregnant.

I was like OH HELLLLLL NO! IMPOSSIBLE!!! I think I may have even had a mini heart attack when she told me this because it was absolutely not possible. Unless there was some sort of divine intervention, there was no way this was accurate. She then calmed me down and told me that it was most likely to do with the fertility injections I was taking and that it was lingering in my system. I relaxed a little but then realized...shoot....they aren't going to let me do my immunotherapy this week if I come up positive for a pregnancy test despite it being a false positive.

So today I spent all day at the doctors...getting my back checked again, getting prescriptions, getting blood work re-done, and confirming my immunotherapy appointment. Thankfully my oncologist is well aware that it was due to my fertility treatment and she knows I'm not pregnant. So Friday is still a go for treatment! And not only that, it is confirmed that my back pain is a result to muscle related injury. Yay!...I guess? But I have the all clear! This Friday I start my first immunotherapy treatment and my first step on this uphill battle for my life.