I’ve been getting involved in the support groups and chats through Reddit and Facebook lately. I think some of you probably know how I feel about my Facebook usage.
It’s been important for me as a survivor to start being involved. There’s a lot of people that are really confused and scared about the process that goes on after you’ve been diagnosed or as you are being diagnosed.
There are a number of things that go on when you start down this road. And there’s a lot of fear that goes on because you are jumping into the unknown. The good news is you might start getting some answers into what is going on with you. Why you might be feeling as bad as you have.
I want to share a little bit of my story about the first couple of days within my diagnosis.
The intention that it’ll help give you an idea of what to expect.
When I went into the hospital, I went in because I had what felt like gas pains. I had a cramp in my right side underneath my rib cage, right around where your liver sits. The pain came on very unexpectedly on a sunny day in November. As the day went on, it didn’t get any better and things transpired from there.
I told myself if it doesn’t get any better by the next day, I’m going to go to the hospital emergency room. And that’s what ended up happening the next morning. I woke up, and moved around, that cramp came right back.
Mom drove me down to the emergency room the following morning. That’s where my story really started to unfold. I did a CT scan of my chest area and we were able to determine that the scan of my liver did not look right. And it actually looked like a bag of birdseed. That is what the consistency looked like. Just really kind of spotty. There was no solid consistency to it.
So we end up getting me down to Saint Anthony’s Central hospital in Denver that night.
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That’s where everything started to get real.
Within the first three days, I had a liver biopsy, and a lymph node surgically removed under my armpit. and by day five, the pathology came back saying I was diagnosed with Hodgkin’s Lymphoma.
My First PET Scan and Chemo
This is when I underwent my first pet scan and that was just absolutely crazy. And By day 10, my first round of chemotherapy. And that’s where my world of reality became absolute mayhem.
Over time, it got a little bit easier for me to process. I started to understand the routine and was able to move forward and learned to zone everything out. But was still dealing with a lot of fear from my own mortality. And I didn’t know how to deal with that stress. I talked to counselors about what I was going through. Fortunately, there were some resources at hand to help me deal with that. So that was one of the biggest things.
I want to really focus back on the biopsy side of my experience. Some of the questions that I’ve been answering are on Reddit and Facebook about biopsies and if they’re painful. I vividly remember the needle going into my side right below my lower right rib.
“The liver biopsy felt like I was being stabbed, slowly”.
The surgeon taking pieces of my liver. I could feel him just in there. It was the weirdest, painful thing I’ve ever felt in my life. I could feel a little grabber is coming in and, and just grabbing and tearing pieces. The surgeon took six little pieces of my liver. Immediately after the sixth biopsy was taken, they knocked me out.
It took a little bit of mental preparation for me. Fortunately, I had a friend that had gone through a liver biopsy due to a different disease. He informed me about it and that it’s going to suck, but there’s just no way around it.
Always a mental challenge
So prepare yourself mentally to have the biopsies done.
Once I had a recurrence, I had another biopsy done. At a different place in my body.
We tried to do a bronchoscopy at first. THat biopsy is where you go through the nose. We tried to get a sample of a lymph node that was essentially right above my heart in my chest. The best way the doctor wanted to go was through my nose to see if they could get it. But because it’s in such a precarious place, they couldn’t do it.
The next procedure was called a mediastinoscopy.
They ended up opening me up in my neck where a tracheotomy would be. We were able to get a biopsy of that lymph node and confirm that my Hodgkin’s came back. Fortunately, I was knocked out for this biopsy because of the incision in my neck.
And that’s where everything kind of led down the road to my autologous stem cell transplant.
With the Liver biopsy, because the liver metabolizes drugs so quickly, that is the main reason why they didn’t knock you out. And I just had to endure the pain of it. It taught me that this is something that you deal with when you’re going through cancer.
Everything that could happen, can happen. It doesn’t mean it will, but it’s good to shift that focus, mentality and that mindset into.
I got to do what I gotta do to make sure that I can get through this as quickly and is health-wise as I possibly can.
So just remember, you’re going through diagnosis and if you have to do biopsies, just mentally prepare yourself that it’s going to suck. And if you can your mindset that way, it’s going to make the entire experience a little bit better.
You will start to feel a little more comfortable knowing that once you do this, you can move on to the next challenge.
I’ve always been kind of one to just jump in and take action to get this thing done. I want to do this now. I want to get it over with. So if I can do that and if I can make that happen as fast as possible, then so be it.
And that’s how I approached my liver biopsy.
And the rest of it for me is history. Take the time to really prepare yourself for biopsy because there’s undoubtedly a lot of fear that goes on and a lot of confusion and anger.
And I mean you will go through the entire gamut of feelings, not only because you’re going through cancer, but now you have to do all these surgical procedures that really keep you on your toes. And if you can, prepare yourself for all the anxiety that comes up and when you’re first starting out, understand there is no easy way to approach cancer.
It’s not easy. None of it’s easy!
A lot of positive self-talk, a lot of meditation, a lot of doing your best to be around people that can support you as best as you can. And I know that there are a lot of you out there that don’t have the support.
So this is where you have to dig really deep and be your own best support group. Fortunately there starting to be some more survivor and patient resources online starting to pop up, which is really good. Facebook has a couple of good ones, Reddit has some really good ones too. Also, Quora is also a good place to ask questions.
So please take a look at those and ask your questions because there are plenty of people that have been out there.
Unfortunately, the medical industry has not done a very good job of helping with survivorship issues, psychological problems, and other physical problems. You kind of must go at it alone, but I want you to know that you’re not alone.
Be prepared, start doing a little bit of research. You’re going to be okay and you’re just gonna fight as you’ve never fought before.
Thanks for reading and If you have any questions, hit me in th comment section below.