Fight Like a Girl

Aplastic Anemia Journey

[fightlikeagirlaa]

It’s been a while..

Hello all, it’s been so long since i’ve posted an update. I wanted to post more, but got really busy with school and adjusting to being able to really live again. I am now two years and 4 months and 3 days post transplant. I had an unrelated 10/10 matched donor. One in the entire world. (just a recap) After my diagnosis with ITP which ended up being Evan’s Syndrome i did a couple of rounds of IVIG. After that my platelets and neutrophils normalized and I was pretty much as good as new. I started school about 9 months post transplant, i did some online classes (cause i was still on isolation) I also started dating again, which was a rocky weird road for a while. lol. Getting back into dating and being allowed to kiss someone was very weird, but it was nice to be able to do that without being fearful of getting sick again. 

After I started feeling so much better and no longer needed anymore transfusions i started a dog walking business. It started off really slow, but it was nice to make money again and feel like i was doing something with my life. After my first birthday, January 22, 2015 (the year of purple hair and then silver) It really started picking up. It picked up to the point that i was making really good money every week, so i decided i was going to move from the nest into my own place. Which I did May 2015. I also got to travel to Colorado in May to check out a college and then to Canada in June for a cousins wedding. Life felt exhilarating. After moving out I got a kitty cat named her Willow and she got along great with my dog Bailey. I also met a guy and started dating him few months in I found out I was PREGNANT.

It was such a happy surprise (a quick one). I had thought after my transplant i wouldn’t ever be able to have children which is why i saved my eggs before i got my transplant in November 2013. I saved 16, 11 viable ones. They are still happily frozen waiting to be used one day. After my transplant i went into ovarian failure induced menopause due to chemo and radiation. February 2015 i found out i was coming out of it after being in menopause for a year. I was told i could try and have children and might be successful but it would probably take lots of trying and take a while. Well my ovaries must’ve made a full recover cause later that year in September i found out i was pregnant.

So i’ve now been busy with my dog walking business and waiting for my little bundle of joy to arrive which she will be here next month (May 2016) 

My situation definitely didn't go as planned but i’m making the best of it, as all of us who have gone through aplastic anemia tend to figure out. 

My health is still going great, no relapses (knock on wood) and no dips in counts even with pregnancy! I hope all of you who read this are doing good and know that if you one day want a baby, that there is hope and i hope one day you become as blessed as i feel to be able to have one of my own in my body.

I will try and update more!

(also i contacted my hospital to try and meet my donor once that is set up i will definitely be writing a post) 

[fightlikeagirlaa]

ITP

I was officially diagnosed with ITP in august when we thought my marrow was failing.... but instead we got ITP which is an auto immune disease. i'll just add it to the list but thank goodness i'm not failing. I'm actually 98% donor! I do have some ebstein-barr virus floating around in my blood which could've sparked the ITP, i'll take that over GvHD 

other than that i've been doing really good! Also will be being featured on a tv show coming up! i'll keep all updated! 

[sarasglamorous]

day +132

sorry I haven’t updated!! I’m alive! I’ve been completely fine, transplant has been smooth I got my central line out and all my appts are now every two weeks!! :)

[mermaidkiwi-deactivated20150430]

“Normality is a paved road: It’s comfortable to walk, but no flowers grow on it.”

— Vincent van Gogh

[fightlikeagirlaa]

Day -3

Finally the road seems to be getting a bit smoother. After yesterday which has burned like a hole into my memory, i don't even feel like it was real we have added ATGAM to my allergy list and are totally going to avoid it. Now we're using Rabbit ATG, and it went much better. I spent the day in the ICU as extra precautionary just because we weren't sure if anything crazy would happen after yesterday. Luckily all i got was the usual symptoms. High blood pressure and a headache. Nothing that some medication couldn't help with! I got to take a nice nap today, only got to eat once though. My mouth feels good and i feel pretty good for getting three nights of chemo, 1 day of Rabbit ATG and one day of crazy anaphylactic shock! I'm kind of flushed so my nails and cheeks are very pink! My counts are weird and have gone up a little a bit which they said is normal and i'm trying to eat and drink as much as i can! i don't feel like i have lost my appetite. I do miss my doggy though... But soon enough i'll be coming home to her! My central line is in such an awkward spot, so i've literally have been braless since i've gotten here. a little bit weird for me but what can ya do?! So hopefully tomorrow will end up okay, i start cyclosprine again and starting a new chemo. so hopefully all will be well! goodnight! :)

[fightlikeagirlaa]

Day -4

Today started off as a good day. I woke up and my wonderful boyfriend was here and we played some games and relaxed, it was a very nice morning. I woke up feeling very sore on my upper body and my throat hurts but I guess that's just from getting my central line yesterday. Hoping to wake up feeling way better. We tried Horse ATG today and though my arm skin test was negative for reaction, I had anaphylactic shock. My skin started to burn my heart raced and tunnel vision began I leaned forward and the next thing I know I'm surrounded by a bunch of doctors and nurses helping me breath, putting epi pens in my legs and putting Benedryl through my IV, I puked everywhere and the other end too which was a good sign my body was trying to get rid of the ATG. I've always been so fearful of anaphylactic shock... so I go to the ICU in the am to try rabbit. Hopefully the reaction was just because I've had horse ATG before. it was so scary though, I never want anything like that to happen to me again! I'm praying that this is one and only bump in my road to recovery! I must sleep now goodnight, see you on day -3

[sarasglamorous]

heart shaped bandage they gave me after surgery! :) day -5 so far so good!

[fightlikeagirlaa]

So today is day -5. Workup has been finished and I got Thursday to spend with my family and my awesome boyfriend! Everyone has been so supportive! I got my central line today, which feels really weird and it took hours to get me into the BMT unit. Got my first round of chemo, no side affects so far! knocking on wood! Decorated my room with a random burst of energy, and Corey's spending the night which is awesome cause he's so helpful and supportive! I seriously am the luckiest girl in the world.

[h-i-t-c-h-c-o-c-k]

[fightlikeagirlaa]

Got my first transfusion yesterday. Platelets just to start some fertility treatments to freeze my eggs. I am not transfusion dependent again yet but I am slowly sadly getting there... Had a benefit last Friday the day after Halloween my family and friends through for me and it went amazing! so amazing to see all the support I have. I am so anxious for what my future holds but trying so hard not to think about it. Anti depressants and anti anxiety pills are helping but I'm sad I have to be on them! Trying to be positive though!

[fightlikeagirlaa]

Also I had a bone marrow biopsy with only local anaesthetic, it was horrible the next time I insisted on a general.

even though it was horrible, i've done both ways. I'm too much of a control freak, so i like to stay awake with a little bit of fetenol. Still really uncomfortable but it eases my mind to know i'm in control! 

[fightlikeagirlaa]

Genetics Doctor

Today i met with the genetics doctor... one of my many appts i've had and of the many i have to come. My transplant doctor wanted me to meet with him because she wanted to see if he could tie together the fact i have b12 deficiency, hypothyroid, aplastic anemia, and lipomas. They're worried i could have PTEN a genetic mutation that pretty much just causes cancer.... but it's not related to my aplastic anemia... but unfortunately it may hold up my bone marrow transplant until we find out if i actually have it. 

We won't know for a few months.. which is when my transplant was suppose to happen. Well, bad luck keep coming my way. I must've broken a couple of mirrors and walked under some ladders. Oh well.

One day at a time right?

[fightlikeagirlaa]

Feeling Brighter.

Sorry about not updating in the past few weeks. I have been busy with doctors appointments and doing things to make myself feel better in general. So everyone dreads the day in their disease when they're told they need a Bone Marrow Transplant... that day has come for me. Last week I became an official Dana Farber patient. My hematologists at childrens have been looking for a HLA matched donor for me. Good news is i have a good donor pool, i'm still waiting however to see if i have any perfect matches, i heard this part of the process can take a while, but not to be discouraged. 

Other than that i have been meeting with my hematologists to talk about my marrow and why it is important for me to have this transplant. They set up an appointment last week for me to meet with the transplant doctors which ended up going very well. I got a lot of my questions answered and a lot of my worries were put at ease... not all of them. I still feel as though i am in denial and that this isn't really happening. It feels as though i am in a really weird dream that is sometimes on the verge of being a nightmare. Being in touch with other BMT survivors have been making me feel a bit better about this as well. I mean it is a cure... It will give me a chance to have a long life, unlike my other options which both bring my quality of life down and survival chances are much more slim. Trust me though, i've thought about them, i've thought about saying no to this whole ordeal and just taking the other two options. 

I already started up on my Pre-BMT workup, the goal is to get me into the hospital with in two months. Hopefully i'll be able to be home before Christmas, but if i'm not i could make the best of it there.

[fightlikeagirlaa]

Results....

So i am officially relapsing...

cellularity last October (2012) was 70-75% now it is 20-25%

[fightlikeagirlaa]

i think i'm depressed...

So for the past few weeks i've been kind of a loner. I have been avoiding people and talking to people and doing things, things i normally enjoy doing. Everytime i get invited out i decide to stay in. I don't like it... When i force myself to do those things sure i have fun for a bit, but then i convince myself i'm being boring and ruining everyone elses time or i start thinking about my potential future... I have a hard time opening up to people, i really do, so to do this again is making me close up even more. I'm so worried that this is going to affect my friendships and especially my relationship. I feel so lucky i'm dating a really understanding guy, but how can he understand everything if i'm not telling him everything about how i'm feeling. I'm worried about being a downer and this whole situation has been wearing on my self-esteem. I feel like i'm becoming a hermit. I feel like i don't know how to converse with people anymore and it's led me to just ask questions about everything, which gets annoying to people.... i just don't know what to do.. I feel very blah lately. I'm worried this whole ordeal will make my friends and the guy i'm dating distance themselves from me, because that's what i'm doing. I feel like i need people to really understand and force me to talk and go out and be understanding when i just refuse. But most of all i think i need people to try and talk to me more, about anything other than whats going on and keep the conversation going so idon't feel like i'm incapable of doing so...

does any of that make sense? i don't even know.

[fightlikeagirlaa]

Ouch!

So today i got my bone marrow biopsy and aspiration and i do not remember it being like this. Definitely a lot more pressure and pain than last time. Like shooting pain down my leg and for some reason my butt hurting? lol. I'm hoping to find out by friday what the results are! I have a bunch of bone marrow matches, so now it's just about finding the most perfect match that's close to me (less preservatives) I'll know more next week when i go back in. 

Counts went down a bit today, but definitely slowed.  Red cells went from 12.4 to 11.8 

WBC went up from 4.2 to 5.2

and Platelets went from like 78 to 62

So again platelets are still the only thing declining significantly, everything else is really not significant.

[fightlikeagirlaa]

Biopsy!

So i have scheduled my biopsy! It will be this upcoming Wednesday at 10am, hopefully i'll have the news of what's going on inside my failing factories (bone marrow) and hopefully it'll either be some good news or what the doctors will consider good news, which would be relapse and nothing else going on (leukemia, MDS, etc.) I am nervous though this will be my fourth! They have offered me sedation again though i will probably only do the fetenol once again like last time because i am champ! :) i don't even think the fetenol did much, maybe help numb a bit more. I think i can handle it all but the anticipation of going in and have a needle in my back and a piece of bone cut out is ahhh not the greatest thing to have on your mind! 

In other news this past weekend my friend Kayla held a benefit for the Leukemia Lymphoma Society! She raised $730 which is amazing! I am so proud of her and she is an inspiration in my upcoming project! I am right now trying to host a dual drive. A blood drive and a bone marrow drive! I have already contacted Pints for Half Pints (Children's Hospital Blood Donation Center) and Be The Match. I have already heard back from Children's and have started collecting names of people. Be The Match has e-mailed me but i'm waiting for a representative in my area to call. Nerves. But this for me won't be so much about raising money as it will be to get people on the donor list to save lives and to get blood for all the people who need it! I mean having AA we get lots and lots of blood transfusions (knock on wood i'm not there yet) So i'm trying to show people the importance of donating! I'm hoping to get 90 people to donate blood which is the max for the blood truck! But the biggest goal is to get 400 people to sign up for Be The Match, i know it will be a challenge, but i've already gotten two people to sign up through the website! I'm just going to network, network, network! 

[fightlikeagirlaa]