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.

Something To Hope For

Bear with me when reading this...I'm still recovering from yesterday's adventure.

It was a very long day for both my mom and I. We woke up with very little sleep yesterday morning at around 5am to head over to the fertility center where my finish line stood waiting for me. Soon after I signed in and sat down in the waiting room, we were whisked away to the pre-op room. I may have looked dead to the world but on the inside I felt like the energizer bunny. So many thoughts were going through my head: Is it worth it? Will it be successful? Will I have any complications? What if the anesthesia doesn't work? Will I be in pain?....you get the picture.

Thankfully when the anesthesiologist came in he was very quick about putting the IV in and explained everything in a manner that was very calm yet entertaining. I admire him for that since it was 7am and he seemed to be rather chipper. He even joked with me saying he needed my other arm for the second IV and for a brief moment I was like WHAT??

Shortly afterward I was brought into the OR and before I knew it I was out like a light. My brain is still kind of fuzzy after that. I remember the doctor coming in telling me that they were able to get 13 eggs which was pretty remarkable especially after 6 months of chemo I did last year. Of course then he followed up by saying he won't know how many will be able to freeze since they have to be tested to see if they are mature enough. The next thing I remember is the nurses asking if I could walk a straight line which I seemed to have mastered quickly as the next memory I have is waiting in the pharmacy for pain killers. Then I remember being in the car and feeling sick to my stomach every time we went over a speed bump...seriously hate those things. And then I slept pretty much the rest of the day.

But then I woke up this morning to the best news I could have asked for. One of the nurses called to tell me that they were able to freeze all 13 of the eggs. They said that this was pretty much a miracle as normally not all the eggs that are retrieved are mature enough to freeze. She also said that since I am very young doing this, it definitely improves my chances of having at least 1 or 2 pregnancies!! I am gonna be a mom one day!! And the sweetest thing about this is tomorrow is Mother's Day. I felt so happy that I had to go and celebrate the most fitting way possible....by going to see Marvel's Captain America Civil War movie.

I'm still in recovery though. My insides feel all messed up and I'm bloated which is incredibly uncomfortable. But I can now say, after the news I got this morning, I have no regrets. Now I can climb this uphill battle with cancer with some light at the end. A family of my own and a life to hope for.

Wow That Was Quick!!

Yesterday was truly a major accomplishment for me. Like I'm still in such a state of shock right now but absolutely relieved. I went to my blood work and ultrasound at Shady Grove Fertility yesterday and at first they were having serious difficulty detecting measurements. I went home that day expecting to hear I would have to come in again, wait even longer for my procedure and felt very discouraged until I got a phone call at home a few hours later from my nurse....Trigger time!

Now the whole point of a trigger shot is to prepare for egg retrieval. It's the last thing you are pretty much responsible for before the procedure in terms of shots. Now when I got this call I was at first ecstatic! This means I go in for my fertility procedure this Friday morning and then I get to start on my immunotherapy next week!! I was finally getting the ball rolling! And then it dawned on me...this isn't like all the previous daily injections. As opposed to those, this was an intramuscular shot which meant big freakin needle....red flag alarm went off just as I hung up with my nurse.

It took me about an hour to get over my fears of needles just for the daily injections but I wouldn't be allowed to do that this time. The nurse tells you the exact time you have to take it and if you miss your time, you're screwed. I knew my limits and I knew that I would never be able to come up with the strength to do this on time. I looked up at the clock and I had about an hour and a half to prepare myself. I had to come up with a plan and fast!

The nurse who taught the injection class offered an outside source of nurses who do "at-home injections" with a separate fee. I decided to call them up and see if 1) they could make it here on time and 2) if I can even afford it. Right off the bat they told me it was a $130 fee for this one time only shot and I left the conversation there....ridiculous!!

Hahahahaha!!!! No.

Then I had an epiphany! Since, as I stated in a previous post, anxiety is indeed a real thing and it would interfere with this medication, I decided this was an urgent care matter. Thankfully my insurance covers trips to urgent care while I'm dealing with cancer so I was definitely going to take advantage of that. I immediately packed up my needle kit and everything and drove straight into rush hour to get to urgent care. Now I live practically in the middle of nowhere so there would be no turning back...I was definitely going to either have a nurse do it for me or I would have to do it myself somehow while I was there....which was really not an option.

I got there with about 25 minutes to spare and the nurse, let's call her Tina took me right away for vitals (standard procedure of course). I start explaining my life story to her and that this shot had to be taken at exactly 7pm on the dot and I needed help in any way possible. I also mentioned the situation with the nurse who would charge $130 for this and she was completely shocked. She went and got the head nurse who then told me that since the drugs didn't come from my insurance (since my insurance doesn't cover fertility treatment), no one could give me the shot and they could only walk me through it. I started to panic until Tina pulled me aside and said "there are laws and rules but we'll work around it" with a wink.

She sat me by a window in the corner of the urgent care, pulled a screen divider and set everything up. Where it takes me about 5 minutes to prep my shots, it took her 30 seconds. I was in awe. She said to me that I had some time to kill and so she was going to tend to other patients but at exactly 7pm she would "help me" with my shot. As time passed I was just doing deep breathing and calming myself down. When the time came found a spot on my leg to do it (which would have taken me forever) and said "Now you're gonna do this and I'm going to walk you through this as quick as I can" as she was wiping my leg with an alcohol swab. She asked if I was looking and as I was looking the other way I said yes just as the pinch happened and it was done in literally a second.

I was floored. Not only as to how quickly it was done, but how painless it was despite how large that needle was. I kept telling her thank you over and over again and when was heading out she was like "stupid rules aren't going to stop us nurses from doing what it right". Tina was truly an angel I'm so very grateful for nurses like her. I found myself driving home with a little soreness in my leg but I couldn't care less. I was just too thrilled with the thought that, my injections were over and now all that's left is the procedure early Friday morning. I felt so accomplished and proud that I made it that far.

Hopeless (Hormonal) Romantic

Sorry for not posting much recently...not much going on. Ever since I started my hormonal shots, it's just been routine...wake up, do 2 shots, try to go back to sleep and fail, get ready for the day, go to an ultrasound/bloodwork appointment, go home and find out I need to up my doses, take two more shots in the evening, go to sleep and do the whole thing over again. Not much has changed and the shots aren't exactly getting easier but the anxiety isn't as bad....so there's the lack of a story for you.

However I have noticed some very strange changes in my thinking and behavior. Not only am I more tired but I've also been having very bizarre thoughts lately. The moment I noticed this was when I was watching one of The Hobbit movies and thought to myself "I think I like Aidan Turner so much more than Tom Hiddleston"......GASP!

"....what?"

"Haha! I'm the favorite now!"

"WHAT?!"

"BAHAHAHAHAHAHA"

I'm sorry Tom.....I'm so so sorry....Haha!!! But that was just the beginning. I have been feeling a drastic range of emotions throughout the day and to such an extreme that it's very confusing to my family. They don't really know how to handle me. So lately I've just been keeping to myself and hanging out with the pug (he's a great secret keeper).

But I'm finishing up Day 10 of daily hormonal injections tonight and hopefully will be done by the end of this week. I'm sure I'll have more interesting things to talk about then as I will be going in for my fertility procedure and then the following day I start my uphill battle with cancer by taking my first dose of immunotherapy. FINALLY!!!!!

Third Time's Not A Charm

Well I'm on Day 4 of fertility treatments and so far so good. I went in for an ultrasound and bloodwork and everything seems to be going as planned. But since I'm injecting myself with hormones and all this good stuff, I have been told to set aside all supplements (primarily the Biotin to help with hair regrowth) and my anxiety meds temporarily. And oh boy...I definitely experienced the effects of that last night.

I had just finished watching the season premiere of Game Of Thrones and now it was time for my third stabbing with daily injections...and even though I had already done it to myself the past two days prior, I couldn't manage to get the strength to do it right then and there. It was like I was fighting with my mind. Part of me was like "Oh please! You did it before! You know it doesn't hurt besides a little pinch. What are you waiting for? Just do it and you can go to sleep" And then just when I thought I gathered myself and took some deep breaths, I'd go in for it and then just...stop. Then my mind would just freak and be like "OH HELL NO!!! Needles are pointy! Look at that 1 cm needle!!! You aren't actually gonna stick yourself, are you? It's gonna hurt and you know it!"....And then I'd end being so frustrated with myself that I'd have to prep my skin again, do the deep breathing and repeat...

I even had my sister try to calm me down, play some waltz music, and even feed me a piece of sugar-free hard candy to suck on during my attempts. Even my fingers started going numb from pinching my skin for so long. It took me an hour of absolute frustration to finally get the guts to do it. 5 seconds. Painless and quick! Then the moment I dumped the needle in the sharps bin...it happened. PANIC ATTACK!!!

Hyperventilating and dizziness quickly took over and I had to sit and talk myself out of it. Thankfully it didn't last very long and my sister was there to compose me so I could take the second shot. The whole time I felt a mix of guilt, fear, hopelessness, and tiredness. What was funny was that I spent about 45 minutes on the first needle but spent about 5 (including prep time) on the second. I felt like a total chicken but I couldn't explain why my brain acted the way it did that night until it dawned on me...I haven't been taking my anxiety meds and needles happen to be a major phobia for me...not to mention I'm the one doing them to myself.

There is such a stigma for people who have to deal with anxiety and depression and I truly wish people would finally learn that it isn't just something that they "get over". It sticks with them and it messes with them to the point where daily function can be interrupted. And even though I have a fear of needles, it doesn't normally bring me to the point of tears and hesitation...usually I just don't look as a nurse gets it over with and I'm fine. But it was something about doing it to myself and my brain not understanding that there really wasn't anything to be afraid of. It's scary experiencing these panic moments because your brain just shuts down. I know it was a panic attack too because the two previous nights were not anything like this. Perhaps it was adrenaline...who knows....but it truly was a nightmare.

So when I went in today for my monitoring appointment, I asked one of the nurses what her thoughts on the best thing to do is before a self injection to make sure you are calm and not worried about anything. And her response was just the most obvious response and I felt so incredibly stupid for not even thinking of it in the first place. She giggled a little and said "Just put an ice cube on it until the skin goes numb and then just do it!".......

....And right at that moment I could think of only two things....One, I'm an idiot...and Two, I know what I'm doing tonight!!!

UPDATE: The ice worked.

The Pointy End

There is a lot of preparation that goes into doing a Bone Marrow Transplant...one of which are daily injections. Now for the transplant, these don't happen until the 2 weeks leading up to being admitted into the hospital for a month. However, because the chemo that they will be using during the transplant is supposed to be SO INTENSE that it will completely wipe out not just my immunity but my fertility, they decided to give me the opportunity to seek out fertility preservation. Last year I decided to take my chances with the chemo and not do any fertility treatment since it's not covered by insurance and it's completely out of pocket. But cancer has already taking so much from me...my time, my hair, my immunity, etc....I didn't want it to take a giant chapter of my life that I had so looked forward to (motherhood). Of course I can always adopt, and I plan to...but I also wanted at least one child of mine.

So now I find myself, sitting at a desk with two syringes sitting right in front of me. Now people close to me will know I already have a giant fear of needles...they don't really hurt too bad anymore since after getting blood work practically every week last year made me immune to it...but the thought of something sharp and pointy entering my skin makes me VERY uneasy. And now not only do I have shots to do for the next few days, but I have to do them myself.

I did my first set last night after quite the adventure. The nurses at the fertility center said they all wanted to pitch in for my cause and covered my first four days of shots. They gave me these little boxes with the meds and I assumed I had everything I needed....HA!!! I opened the boxes last night when I felt prepared to begin my 10 days of shots....to find that I had everything BUT the syringes.

Now when dealing with fertility treatment, you are working on a time table...and the fact that I was rushing to get this done in a timely manner so I can start my immunotherapy on time made this a prime reason for a panic attack. It was already 9 pm on a Friday and I had no idea what to do. I had to call the emergency nurse line because if I didn't get these drugs in last night then I would be off my schedule which could easily ruin everything. Thankfully the people at this clinic are all super angels and this nurse who I spoke with was willing to meet me half way where she was, so she could deliver my syringes. I could breathe.

So I drive across town to meet up with her and we decided to meet outside of a Panera that just closed for the night. It was really kind of sketchy meeting up with someone I don't know for needles....but they came through and I raced back home so I could stab myself in the gut. I get home open up the bag of "goodies" that my nurse gave me to find that not only did she give me syringes but also provided me with another sharps bin, some alcohol swabs, and a little cheat sheet on what to do. I felt so loved...lol!

So with my mother sitting by me, I prepped my first injection. I had taken an injection class 3 days prior to this but this would be the first time I would be injecting something into myself and not into a stress ball. I pinched an inch of my skin not far from my belly button and I think I counted to three about 20 times before I had the guts to really do it....I'm such a chicken. But seriously, I would normally look away at shots being given...but when you're the one doing it, you have to watch or else you could stab yourself in the hand...which I did not want to risk.

So the first one was done and the moment I took the needle out I was in a complete state of shock. Shortly afterward I started prepping the second. This time it was one of those pen injections (like an epipen). This was was easy as all I had to do was put it in and press the button. This time I think I was pinching my skin so hard out of shock from the last shot that I didn't even feel it at all. For the next hour I would be saying "I can't believe I just did that" over and over...and only the leftover chocolate cake in the kitchen would be able to calm my nerves enough to let me go to sleep that night.

Now it's the next day I get to look forward to doing that ALL OVER AGAIN!!! Woo! Luckily Outlander is on tonight so I'll have a slight distraction from the anxiety.

But yeah...that's my lovely needle story...only 9 more days of this torture for what is a pretty good cause, in my opinion.