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.

A Never-Ending Battle

So hey peeps! It's been a while since I've written in this blog...and I kind of failed at it last year during my chemo treatments. So I figured I might as well just do a recap of everything that took place last year up to now...cause it's a rather intriguing story and not to mention, an ongoing uphill battle. So hang on tight....it's quite the ride!

After my butchered biopsy (which I still have a pretty wicked scar on my neck from), I had my first PET scan and my first bone marrow biopsy. The PET scan wasn't as bad as what I thought it was...just very time consuming. Unlike CT scans and MRI's, you get injected with this radioactive dye and you have to stay in solitude for I think about 45 minutes or something like that. Then you go into a CT scanner and the radioactive dye picks up the glucose from the cancer cells in your body and confirm what is there. I find these easier than previous scans however there is a lot of radioactivity so they can't be done back to back. The bone marrow biopsy is definitely a pain in the rear...and I mean that quite literally. To be light on the subject, they stick a needle into your hip bone and extract bone marrow for testing. Luckily I opted to get some meds to make me a loopy and tired but I'm still awake during it which is a bit unpleasant.

However I made it through and got the good news that I didn't have any cancer in my bone marrow. This meant I can move on to the next step...chemo.

Now when you have to go in for chemo every other week, they suggest you get a chemo port put into your chest...this makes accessing a vein a breeze....the procedure is quite awkward but done rather quickly. Then I went to my first chemo treatment a couple days after that. I was on ABVD chemo...which are four drugs administered once every other week for 6 months. My mom luckily was able to work that in her schedule and brought me to every appointment from July to December. If it weren't for her, I don't know what I would have done...she was there holding my hand through it all...thanks Mom, I love you.

Anyway, as I went through every treatment I noticed my body didn't react like a standard cancer patient...which could be because I was generally in good health and I was young. I didn't loose ALL of my hair but lost about half and thinned to the point where I had awkward patches. I also didn't experience much nausea until the last two treatments in December...those were the hardest. Instead my biggest symptom was mouth sores but even went away with each treatment. And despite the emotional stresses I went through and the fact that I had to ultimately take disability leave in August, I was one of the lucky chemo patients. By the end of it all I celebrated Christmas with family with the thought that the new year would be better and had so many plans. I was going to go back to work, I wanted to travel to Europe in the summer, I wanted to get an apartment, and I wanted to go back to school. But everything was completely demolished the moment I had my first PET scan after chemo.

The scan came back with a little tiny acorn of a cancerous reading in my chest. We thought it could be a false positive so we aimed to try again after a month (you can't do PETs back to back). When I did it a second time, I got the awful call from my doctor telling me I had to skip work and come in. There she told me words no person ever wants to hear. Not only did my cancer come back, but it grew 3X it's size in one month and was past the point of chemo/radiation. I would ultimately need a bone marrow transplant with a donor and she left me with a 5 year life expectancy. This was coming from the same doctor who told me just last year that this was curable and all I needed was chemo. I was broken...and I wouldn't have it.

I sought a second opinion at Johns Hopkins in Baltimore and there they actually gave me options. They would put me on immunotherapy and then because my bone marrow came back negative for cancer a second time, I would be able to use that for my bone marrow transplant. It's quite complicated when explaining how it works, and I will probably mention it when the time comes. But for now....this is what I face....and this is latest update.

I start my immunotherapy on May 6th and I do this every 21 days for 3 months and then I go into prepping for my transplant. I'm very nervous, very scared, and very very on edge about this. But as I've learned this past year...I need to take one day at a time. If I do everything Johns Hopkins says, I will be able to stay alive for most likely longer than just 5 years...if I do nothing, I won't even make it to the end of this year....and that's not an option for me. This may be a never-ending battle...but what life isn't? And this is the thought that makes me feel normal.