COVID-19 won’t stop me…

It has been over a year since I have written here. A lot has happened since, but I think that is to be expected given a year has passed. There have been both highs and lows, but I continue to cherish the highs to get me through the lows.

My cancer returned last fall, but thankfully it is only a small mass in one of the lymph-nodes they left in my pelvic region, so there wasn’t great fear of metastasizing. Treatment was started right away and was going as expected: rough. I faced the fatigue, constant widespread pain, dizziness, and even lost some chunks of hair. These were all things I have faced with my other chemo treatments. Even with the return, I pushed through and continued my college career, determined to finish my senior year and graduate on time. I ended my fall semester with grades I was ecstatic about, given the challenge of cancer treatment again.

Over winter break, I really focused on applying to grad school. Of course I have my dream schools, but for me I wanted to be realistic in cost and distance from home; I don’t want to be at home, but I want to be close enough that I would not hate the drive. I took my chances and applied to one school: Bloomsburg University. Given that I did not have the highest GPA in the class and that my GRE scores were landing me in the mid-percentiles, I knew I was risking it only applying to one, but I went through with it anyway. In the beginning of March, I received an email from the graduate admissions office and I held my breath as I opened it. I had to reread it a few times to grasp the fact that I was accepted into their Audiology Doctoral program and that my college career is going to continue in the upcoming fall. This was the highest of highs that I have experienced this school year as I was not sure if it was really going to happen, but here I am!

Around that time, before my spring break, COVID-19 was really starting to make an appearance and I was one of the students that thought we would not be returning to in class teaching after spring break. Still going through treatment, my oncology team didn’t want me returning whether classes continued in person or not. Preparing not to return after spring break, I packed my car to the brim with everything I could fit; I knew I would need a second trip, but the less I had to get later, the better. Spring break began with everyone boarding flights and getting in their cars heading out for their vacation while I was home gathering the supplies I would need to protect myself like gloves, hand sanitizer, and face masks. I knew that once this picked up speed, there would be panic buying, and sure enough, that’s how it went down.

Mid-break, we all received the email stating that our spring break was extended while other schools were already going online for the remainder of the semester. With so many students still thinking we would return, I took this time to go pack up the remainder of my things, and I am thankful I did. Half way into the second week of our break, they announced the semester would continue online and all hell broke loose with all the students trying to get all their things packed and home. At this point, all my things were home and I was prepared to be home for awhile.

The week our classes started, was also the week that my final round of chemo started up. This week is my third week out of eight total. The side effects have already started to settle in with fatigue, pain, and nausea being the top three. It sucks, but I am so thankful to be home for this whole round. I am also thankful that classes are online so I can still finish my final semester, while finishing my final round of chemo. If all goes as planned, my last final will be on May 8, chemo will end May 15, and surgery will be sometime the week following.

Yes, I have already been down the road of “this is my last chemo” on two different occasions, but this time I truly have faith that this will be it for me. That this will be the time that I get to say goodbye to cancer and hello to life as a survivor. I have these plans to celebrate graduation and surviving chemo by going on a trip and skydiving this summer, but with COVID-19, those may need to be put on hold, but that is ok. It will not stop my from reaching my goals and celebrating my accomplishments. It will not stop me from planning for my future. It will not stop me from enjoying the simple moments. Nothing can stop me but myself, and I do not plan on stopping anytime soon. I still have a life to live, but I will continue to do it in a way that not only protects myself, but those around me. So for now, I can be found at home looking forward to what my future holds..

To my daughter: I am sorry

(Trigger Warning: Child loss)

So many things can leave a lasting impact on anyone. Everyone is affected differently as well. Loss can be really difficult for anyone to face, no matter who it was.

When I found out I was pregnant with you after the rape, I planned to keep you and raise you as my own. The thought of you brought so much joy in my 14-year-old life. I was so excited to see you, hold you, and watch you grow into who you would become, but I didn’t get to do that.

I carried you for 23 weeks and did not face any complications along the way until the end. I had a really good beginning to my pregnancy, but I started to get really sick around week 16 and almost lost you then. The doctors planned to keep me for observation and monitoring until birth because they said you were affected, too. We tried to keep you in as long as possible to give you the best fighting chance possible, but I guess it wasn’t meant to be. You were stillborn on December 1, 2011, at 8:58 PM. You were 8 inches long and only weighed 9 ounces. They are numbers I will never forget. We did everything we could for you to have a possibility of survival. I did everything I could for you. I feel like I failed you, though. I know that I didn’t, but it’s always the “I could have done more” mentality. How much would you have weighed if you were full term? How long would you have been? What would your first cry have sounded like? Would you have a full head of hair like I did? So many questions, but there are no answers. I am sorry I couldn’t have done more.

When you were born, I refused to hold you, or even look at you. I was so furious about the situation. You would have brought me so much happiness in my life, but you were dead. How could you bring me happiness? I didn’t hear you cry. I didn’t hear your heartbeat on the monitor. All the doctors and nurses were silent because they knew and didn’t know what to say. What even do you say to a hopeful mother waiting to meet her child when you know for sure that the baby is dead? How does the mother even cope with that? I don’t even know and I’ve been through this loss with you. I just wonder how light and small you would have been in my arms. What if holding you and seeing you gave me some closure? Or would it have made it worse? I will never know. I still love you with all my heart and will never forget you. You are apart of my life, even if you are in a different and better place than here.

So, I am sorry for not giving you the love and attention you deserved from me on your birthday. I’m sorry that I let my anger overtake the love I have for you. You deserve so much more my love.

On the night I lost you, one of the nurses took me over to the windows and the stars filled the sky that night. “She may not be here with you, but she will always be looking down on you from the stars”, she said. I will never forget that. Every night I look for the stars. I will always wish that there could have been more with you, but I will never forget you.

I love you, Jocelyn. That will never change.

Striving to Thrive

I get started with these plans to keep up with my blog, but as everything else seems to go, it doesn’t go as planned. But, I am here and will persevere.

A few weeks ago I finished another semester of my undergraduate college career. This semester was challenging as I expected, but I still managed to keep my 3.5 GPA, so I can’t complain too much. The hardest part of this semester was “running” the Student Veteran Association that I am currently president of. It’s not a position I ever thought I would hold, but have enjoyed all the opportunities that have come with it. I have met so many new people and have had the chance to make a difference in some people’s college experience all while building a community to support the military personnel on campus. It truly is amazing what can get done if you have the right people with the right motivation to make a difference. The challenge I faced in this position was being inadequately prepared for the tasks it involved; I was not given any notes, contacts, or tips on how to get things done. I was trying to manage and plan for this wonderful organization with no known knowledge of what I was doing except for anything I could remember from last year. Sure this was a challenge, and I wish it wasn’t that way, but it also forced me to build myself as a professional individual and better problem solver to get events organized for our members to participate in and to hopefully build the community. There are always positives to be found.

Since I held this position and I have the wonderful diagnosis of cancer that I am still battling, the majority of the work I did for the organization and school was done in a hospital setting. Wasn’t the ideal place, but things are to get done so I can continue moving forward. It’s becoming normal to see me in a hospital bed surrounded with books, my laptop, and of course the medical supplies that are needed. I have adapted pretty well to what I need medically though, so it doesn’t bother me as much any more. Everything takes time, it’s just finding the patience to wait.

I did take a trip out to NM this past November though and did manage to get on a clinical trial and I am very excited to see what the results will be, even if they are not what I hope for. So far, from what I am told, the trial is going well and as planned with the results they were hoping for, so that’s nice to hear for once. I have to go out to NM one weekend a month for the 6 months the trial will span, but other than that, all the medication and treatment with the trial can all be done at home. I also starting my (hopefully) last round of chemo about 2 weeks ago. They still have me doing every Friday as chemo day which I can work with. It’s a heavy dosage and my body has really struggled with every chemo round I’ve been through, so they don’t want to overload my body and give time between each dose for my body to prepare for the next. I guess that’s part of why I’ve been fighting for over a year and half now.

I am currently on a plane making my way down to Orlando for a SVA conference and I am so thankful that I was medically cleared to fly, even if it requires wearing a face mask, disinfecting everything, and packing a crap ton of medical supplies into my luggage. Attending events like this keeps me feeling somewhat of a normal, healthy human who can do these things. It is frustrating to get the stares as I walk through the airport with everything, but I want to stay active and I gotta stay healthy and alive to keep active. I do know that I have to keep aware of my limits though and try not to overdo it. I need to take time for my body to rest and recoup, including doing my IV fluids in my room and taking all the joyous medications. Just trying to survive so I can thrive in this thing called life.

That’s about all I got right now for this update. Life is going as good as it can right now and I’m “comfortable” and aware of the steps I need to take to get to the end and final conquer this battle. It’s been a long time coming and there’s still a ways to go, but I will make it. I will survive.

I’m Still Here

Hello to all those who read this!

I know, I have been silent for some time, just have so much that I am working through in life. So many changes and new challenges to face, but that’s life. Right? I hope I have something right.

Lately, it’s been primarily adjusting and refocusing back on my college education. Yes, you read that right. I am still attending college full time while battling cancer and recovering from a transplant. I have had people tell me that I am an inspiration for continuing my education through everything, but that’s not why I do it. My education is important to me, and when I am done and conquer this battle, I want to continue my life as “normal” and have the job that I want. So, I will continue going to school and gain the education I desire.

While I am not in school during the fall and spring, I am working. Yes, you read that right, too. I am also working while battling this cancer. I am in the Air National Guard and absolutely love it. They have been wonderful working with me and my needs. I am an aircraft mechanic, so sadly I haven’t been able to do much of my job the past year, but I have still been able to contribute where I can. I wish I could do more when I work though. I feel like that’s just a constant frustration. I feel like I am so limited in what I can do because I have cancer and how the treatment affects me. I am sure I am not the only one in this battle that feels that way. I can’t take trips to other bases for weekends because I have to stay close to home. I can’t work on planes because there are too many chemicals. Take away those two things and what am I going to do? I end up doing administrative duties and the like, which I don’t always mind, but I am in the military in a demanding job and I can’t do more. I know it’s not in my control. I have to work with what I got and in time I will be able to return to work. I just gotta get there. Everything takes time and sometimes my patience is thin.

As you may have picked up on through my recent posts, I did have a peritoneum transplant. I had about 75-80% of my peritoneum replaced. I was placed on the transplant list in July and only spent a few days on it. I did not, by any means, like being on the transplant list. Yes, I am appreciative of my donor. Yes, I am honored to have it to live. But at the same time, I still question why “I was worthy of it”. Why do I deserve it over the person behind me? I guess that’s my depression peering around the corner though. At first, the transplant went really well. My body was showing signs of acceptance and circulation. That’s what we wanted. But why would any of this be easy for me? A few weeks into August, I was having some issues: fluid buildup, lots of pain, swelling, and sensitivity in my abdomen. I was also struggling with eating and digesting anything I ate. Scans and tests then showed acute organ rejection. Really?! Since there wasn’t much damage to my new peritoneum at this point, they decided to do a month of trial medication and see if the rejection would stop. I am now reaching the end of my trial month and prepping for more tests to see if another transplant is in the books for me. It just never seems to end.

At this point, I can confidently say that I am aware and accepting of my current medical situation. I know I have cancer. I know it has now been 66 weeks since first diagnosed. I know I no longer have a reproductive system. I know I will be on hormone replacement therapy for the rest of my life. I know I had a peritoneum transplant and am risking another. I know I will be on anti-rejection medication for the rest of my life. I am aware of all of this, no matter how terrifying it all is.

But there are other things that I am aware of. I know I have an amazing support system. I know what to expect when I do my final chemo round. I know I will survive this. I know I will have a life after this. I know I will find someone who loves and accepts me for me at some point in my life. I know I will have the career I want. I know I will strive to achieve everything I desire in life. I KNOW I WILL LIVE!

I don’t know when I will post again. Between school and medical necessities, my life is pretty consumed, but I will do my best to post again in the near future.

Thank you for reading!

The Big 21

I know some people who make a big deal about their birthdays every year and have to go all out to celebrate each one. I’m not saying these people are wrong to do that, but that’s not me. Sure, growing up I celebrated every birthday with a pool party and sleepover, but as I got older, I didn’t find the big deal in them. My “sweet 16” included my three best friends at the time coming over for a movie marathon. Talk about big and exciting. My 18th was pretty much the same thing, except I was more focused on leaving for basic training than I was on celebrating my birthday. So, yesterday, July 11, I celebrated my 21st by going out for dinner and drinks with my dad and enjoyed downtown Harrisburg.

Here’s the thing, I couldn’t have alcohol yesterday. I’m the “rare” person who doesn’t drink on their 21st, and that confused a lot of people that didn’t know my situation. What the waiter or bartender didn’t know is that I can’t drink for two different reasons: going through chemo for cancer and recovering from a transplant. Don’t get me wrong, I would have loved to have a drink last night to celebrate, but I don’t feel like I missed out. If all goes as planned, I’ll be able to celebrate later, and I’ll be celebrating more than just turning 21.

When I was first diagnosed, it didn’t really hit me that I had cancer and would be going through treatment until a few weeks in. Starting that journey included many changes in my life including my diet, especially when my diagnosis was changed to stage 2 and chemo started. Towards the end of my “first round of cancer”, my diet was down to eating rice and fighting to keep it down with an NJ feeding tube to give me the nutrients I couldn’t eat. I lost the most weight at this time, and all I wanted was to be able to enjoy the food. I was in this state for a total of 3 months. It made me realize the difference in the mental state when I couldn’t feed myself by eating and had to “feed” myself through a tube. I was the girl on campus with a mask from my immune system being so down, a feeding tube from my backpack to feed me, and another two lines (one for fluids and one to monitor readings) leading to my arm. I was connected to my bag 24/7 and hated every minute of it. I was known on campus for what was seen, and I hated that too. “Oh, you were the one in a face mask and all the tubes/lines.” Yes, that was me. Glad that’s how you remembered me.

After I reached remission after my surgery, relapsed, and was able to eat a variety of foods (2 months after my last chemo), I went out with a few of the people I’m closest with on campus for lunch. I had a steak, and it was wonderful. I enjoyed every bite of it because I just went through 44 weeks of chemo and had no clue when I would be able to eat another steak after learning that I relapsed. At that lunch, we all made the plan that we’d do it again once I was back in remission. I didn’t realize at that point that I wouldn’t be able to drink on my 21st, so I guess I’ll be getting a steak and a drink when I get in remission. That’ll be a nice thing to celebrate, but I won’t be celebrating my 21st, I’ll be celebrating remission. I gotta get there first.

I never thought I’d be in this position. Never thought I’d be in many positions: rape, child loss, loss/suicide of those close to me, and cancer are the top situations. Here I am. I’m still alive. I may not always feel alive, but I’m still living, breathing, moving, and eating. I’m surviving. I don’t think life was meant to ever be easy. I have learned so much about the people around me and myself through everything that I have faced, good and bad. I have grown so much as an individual from going through what I have. Yes, I hated every bad situation and still do, but I know that they have matured me and taught me so much that has made me the person I am. This is me. I will be honest, raw, and open about what I faced to help someone else because I know what it’s like to feel like there’s no one else who knows what you’ve been through. If you feel alone, you are not. I promise you that.

So, here’s to being 21. I’m ready to see what the world holds for me, at least as prepared as I’m going to be.

A journey within a journey

For me, it always seems as though every journey, whether trial or triumph, has smaller journeys involved in the process. My journey through cancer diagnosis and treatment has had a multitude of journeys including, but certainly not limited to, diagnosis, different treatments, remission, and relapse. Each journey required learning, adapting, and overcoming. This past week started a new journey for me that I never expected.

After my most recent surgery including a complete hysterectomy and a peritonectomy, my stomach continued to grow more distended. I was in excruciating pain, couldn’t keep food down from said pain, didn’t fit the majority of my clothes, as well as a whole list of other related issues. I was able to gain access to some more wonderful medication that helped ease the pain and allow me to eat enough to sustain myself without another feeding tube.

I was scheduled to have an MRI and more blood work done to figure out what the complication was. Last week I got the results: my organs do not have enough support to function properly, nor do I have the proper circulation needed for the fluid buildup that was happening. Back track a bit, after my surgery, they did not replace my peritoneum because they calculated that my body would be able to adapt to this change. Well, they were wrong! So here I sit with supports in my abdomen to temporarily hold my organs in somewhat order until I can get in for another procedure to replace.

The hope is that I will not need an artificial replacement. This is where that journey comes into play. My information was submitted to be placed on the transplant list. I know quite a few people that needed different organ transplants and I never thought I’d be on that list, but here I am. I got the official notification that I was on the list yesterday. If I can’t get a transplant in a month, then I will have to get an artificial because it could cause too much damage to my organs if I wait longer than that. The fear is that my body won’t accept the artificial due to previous issues, plus they’d have to remove more of my peritoneum instead of attaching the transplant to what still exists. This is still sinking in. For me, I need a peritoneum without damage and ,of course, matches my blood type with some other specifications. This isn’t something I can go ask someone alive to get tested, why would it be that easy? I actually have to wait for someone that matches what I need to die. I find that a bit out there for me. I never thought I’d be in the position where I’d be waiting for someone to die just so I can get their abdominal cavity lining. Then again, I never thought I’d have cancer either, yet here I am.

With all of this this past week, there was a positive that came out of it. I was able to start back at work this week, which is a massive blessing, even if I can’t do anything and just sit all day. Having an income will be wonderful to help ease the impact of upcoming costs. It will also give me the ability to pay bills and not worry about food for the month. No, I won’t be able to live a thrilling and filled life, but I can go to the extra appointments to help alleviate pain and discomfort and other symptoms and not worry about not having the money to pay the copay.

I have two different parts to me right now: (1) I am ready to call it quits because it’s been over a year since my first diagnosis and I am tired of fighting, and (2) I’ve made it this far, I’m going to keep fighting till the end. I’m trying to stay optimistic. I’m trying to look for the future. I’m trying to enjoy what I have in my life. It’s so hard! It just feels like every accomplishment is followed by another trial.

I’m exhausted all around. I’m drowned in bills and loans. I’m in pain. I don’t want this. This is not the life I want to live, but I’m not going to end it. I know that as long as I’m able, I will fight. I will survive this. I may not know how, but I will.

As always, thanks for reading.

The good with the bad

WARNING: this post may cause triggers related to sexual assault

Welcome back!

I know I’ve been MIA for a bit, but life just keeps on going. There has been good news mixed in with the bad, and that’s what’s running through my mind. Lately, my life has not been the easiest. I have been given more bad news than good, but I’ve adapted and continued on.

May 31 I had my procedure to remove the rest of my reproductive system as well as the majority of my peritoneum. The procedure went well without complications (good), but the healing process has been long and hard with complications after surgery (bad), but I’m still going. Two days post-op, I was still bleeding heavily and later found that I ended up tearing stitches again and would have to have another procedure to close up and place a drain. Once this was completed, I was placed on restricted bed rest and was not able to move for 72 hours to give my body a chance to catch up. Let me just say, not moving for 3 days definitely tested my sanity, especially since I can’t personally do visitors.

My goal with this blog is to be able to open up about what life has given and taken from me to help others, so with that, here’s some background with visitors for me:

This does not come from a bad experience with visitors for me, per say. My parents ended up divorcing when I was 13. After the divorce, my dad came out gay, and back then it was terrible for anyone who was gay, or, in my case, related to a gay person. I lost majority of my friendships from either them or their parents not wanting them to be around gay person or someone related to a gay person. This left me very isolated and in search of any acceptance. I had one friend who stayed with me and I thought it was out of true care and support for me; his name is Jake. Jake was someone I thought I could always trust and felt safe around. I’d hang with him at his house or out-and-about and enjoyed his company. One night, I went to his place like normal to talk about the divorce and how I was managing it. He gave me a glass of water like normal and woke up a few hours later tied to his bed, naked, with him standing over me; I was drugged. That night, Jake raped me, beat me, and did everything his heart desired. He never loosened the restraints during the rape, he just told me all he wanted to do to me and proceeded to follow through with his words. How can someone who has always been there for me tied me to a bed and rape me?

After he was done with me, he got up and walked away. He came back a little while later and threw a sheet over me, untied me, and carried me out to his car. I fought with all the energy I could muster, but he easily managed to restrain me in his arms. At this point, I was terrified of where he’d take me and what he was going to do next. Is he going to rape me again? Is he going to kill me? I was honestly terrified for my life because this guy I thought I knew just took advantage of me.

We drove for about 30 minutes and he seemed to debate on what he should do. We eventually stopped in a place I was not acquainted with and he pulled me out of the car and drove off, leaving me in a heap of blood and tears with only a sheet to cover myself on the sidewalk. It was around 0200 at this time. I stayed there for what seemed like forever until someone finally stopped and helped me; thankfully it was a women. I cannot remember any of the conversation we had that night. We only had to walk two blocks to the nearby hospital where they admitted me and started the tests and screenings they needed to perform. I left a few days later with a hairline fracture in my cheek bone, a severely bruised jaw, and various cuts and bruises covering my body; when I left, I was told I was not impregnated.

During this time in the hospital, I only saw my parents when they had to sign papers and take me home. They didn’t visit me when they had the chance and wouldn’t look at me when they signed the papers. I’d understand if they didn’t want to see me, but my mom refuses that I was ever raped and my dad just doesn’t talk about it. This is how it has always been and continues to be.

I’ve eventually accepted this for what it is. I am more independent than I ever thought I’d be, and I’ve become very good at managing all my medical necessities on my own. But with Jake destroying my trust and my parents, the people who should always be there for their kids, not giving a shit and showing up, I no longer feel that I can trust anyone that enters my hospital room. Also, being in a hospital bed puts my PTSD on high alert for anything out of the ordinary. So with all this considered, it is easier for me to not have visitors during my hospital stays.

Going back to the beginning of this post, I spent a total of 12 days in my most recent hospital stay. It consisted of everything needed for recovery and provided an environment for me to focus on what I needed to do to recover the quickest and healthiest. I’m now at a little over two weeks post-op. I have received news that surgery removed everything that was needed out (good), but I’ll have to have more tests and scans to figure out why my stomach is still as distended as it is (bad). But, all I can do is keep going and do as I’m told to recover and be able to continue living my life.

I will live and I will be a survivor. To me, that is not a choice. I have to put all I can into fighting this fight so I can live the life that is in front of me. I know I have so many opportunities in front of me. There are things I want to do and so many places to see. That is my motivation to push through and win this fight. I will win, even if I lose parts of me along the way.