Well, on the first day of April I posted an image from one of my favorite instagram pages about overcoming obstacles and being ready for change. I posted it with a caption about how April was going to be the hardest month of my life so far and honestly I was right. April was the hardest month of this journey so far but not in the ways I ever expected it to be. I thought I would have already started the transplant process and I assumed the pain I would describe would be mostly physical but that’s honestly just not the case.
April has been the most emotionally traumatizing month of my whole “cancer journey” thus far. I not only lost my job and my insurance but it has been one thing after another. When someone tells you that you won’t lose insurance coverage if you do all the right things you tend to believe them. I don’t know when I’ll learn that nothing for me ever comes easy. Not only did my insurance lapse but it took both my husband and my mom calling Ulta HR numerous times to get it fixed. It wasn’t just an ordinary day that I needed it, no, it was the day of my Stem Cell Transplant consultation that I needed it. The day I could have had some peace of mind and have received a scan to show the brutal ICE regimen was working but that’s not how my day went. I also went into that appointment thinking I knew how it was going to go but boy was I wrong about that too. Not only that, I was told that the Lupron I have been receiving is basically pointless at this point which no one in Nevada told me that. I am struggling so hard with this, so fucking hard. The one thing in life women are meant to do LITERALLY our bodies are meant to do it, and I’m being told it’s off the table for me. Why wasn’t I given a chance to do something about it this time? Why didn’t anyone tell me I could get my eggs harvested and frozen? I was robbed of those choices because I was told Lupron would protect me and my ovaries all for another doctor to say absolutely not. I know that there are other options I know that, but honestly keep those thoughts and opinions to yourself because unless you have been told you will no longer be able to have children at 27 years old I don’t really care or value what you have to say about it.
I so desperately want to write a blog filled with positivity and uplifting words but I just can’t these days. Especially after this week. It has been 10 days since my consultation and on Monday it had almost been a week and I had not heard from a single soul on what was going on with my pre transplant tests. So, I decide to call because apparently no one cares about the well being of my life besides me. I call and the most frustrating thing is when people act like they have no idea what you’re talking about and connect you to different people and say “I’ll have them give you a call back” my life is the definition of side effects and waiting and more side effects. Finally I get a call back and they say they’ve received the orders and then ask this “Did they say when they want this by?” Oh, I don’t know YESTERDAY? It’s honestly so frustrating the lack of urgency in the medical field and even more frustrating is the lack of communication to us as patients. Finally I get a call back from the scheduler who schedules my PET scan for Tuesday (scanxiety has already begun) and I ask her about the other tests and she says “you should be expecting a call.” Which is code for no one is going to call you so you’ll have to take care of it yourself….again.
Here’s where it gets fun, no one calls which I’m not even surprised at this point so Chris and I decide to show up at the hospital in the morning before my apt at the cancer center because well they’re next to each other and I need my shit handled. We walk in and explain what we need all to be told “two of those tests don’t need to be scheduled.” Okay, well the Bone Marrow Biopsy does so we need to figure that out. She connects us to someone named Karen (I’m putting her name because she’s an asshole, sorry not sorry) Karen is on the phone with us 3 feet from where were standing and she has absolutely no idea that we are staring at her while on the phone with her watching her roll her eyes the entire time until finally Chris says “hi, yeah were right here” She gets off the phone and continues to lecture me about what the radiologist needs to see for a biopsy to be approved while interrupting me as I explain to her it’s for my transplant pre work and she needs to check her files. “We don’t have anything but I’ll check” Yeah, she comes back and has it scheduled (because I’m not an idiot) we ask her about the other tests that we need and she proceeds to tell me that the bone marrow biopsy is the only one she has. I say okay because I don’t have time to argue with her but I let her know I’m going next door to get my blood taken and I’ll find out, Then the other woman chimes in “I understand they’re taking your blood, but well still have to take your blood when you come in for your biopsy” At this point I’m doing everything in my power to remain calm because that isn’t at all what I was trying to say. I simply tell her I know it’s not my first time doing this and we leave. Low and behold the scheduler faxed over the tests with its entirety and they failed to see or look for it. After the scheduler at the cancer center argues with them she just decides to re send it because like us she doesn’t understand what is even going on over there. Now everything is supposedly scheduled for Wednesday and they want me to do my heart and lung tests after my bone marrow when I’ll be sedated…makes sense….
Then all I wanted to do was get some glasses because I cannot wear my contacts during the transplant process and SURPRISE the insurance only pushed through medical not vision so after two more days of dealing with those phone calls I have officially ordered glasses and they’ll arrive in 2 weeks ( I know you wanted to know)
The point is I’m tired I am so exhausted from fighting all the time. I now torture myself on a daily basis with my Time Hop memories to look back on what I view as better times. I find it so hard to remember what it feels like to not be dealing with cancer. To be a “normal” human being. As much as you guys are probably over hearing me talk about cancer I am tired of it being my life. This is not what I had planned for myself in a million years, but life isn’t fair sometimes and although I don’t have the words to even describe how grateful I am to be alive, I am tired. I will never give up though because it’s just not in my nature, and I will make something out of this shitty experience and I will own it for the rest of my life. But I so desperately need this to be it. I need this transplant to cure me because although this seems like “only a few months or only a year” as people love to point out. It’s so much longer and more than that. Cancer doesn’t just end after you receive treatments and transplants. It has life long damages and effects, but for now I’ll honestly be perfectly grateful and content with the words “cancer free.”
XOXO Your very tired Bechtold Badass