lan8390 started followingabout 3 years ago
lan8390 shared an experience
Procedure or Surgery (Surgery): I went through so many procedures it's hard to generalize them all...
I first went through a bronchoscopy to see if they could get a sample of my lymph nodes in my mediastienum, where the disease seemed to be most present, but that didn't prove to be successful because I'm such a small person the scopes were too big for my body. I stayed overnight since the ordeal was a bit harsh on my body and it had taken an hour to get an iv in me. I hated needles and use to faint each time I got poked so of course I was very nervous and didn't have a fun time. I'm lucky to have had my boyfriend and family there to distract me by playing Angry Birds while they kept poking me. I think that's how I survived getting poked and pricked for and hour.
The second bronchoscopy procedure was a success in that they were able to get a sample but was unsuccessful in yielding a diagnosis. So we began to plan the next phase.
I chose to do a needle biopsy over surgery because I was afraid of getting too many scars but that all changed as you shall see. The needle biopsy wasn't a walk in the park but it wasn't as bad as I thought it would be since I was terrified of needles. The hospital staff and my boyfriend were able to keep me calm and distracted. I wasn't sedated but they numbed the area they performed the biopsy at, my neck region. I talked and joked with everyone to keep things light.
Since the night of when I first found out I had my lungs covered in masses and my lymph nodes were incredibly large, I always told myself that everything was going to be ok. The thought of cancer never crossed my mind. I think I went into survival mode to make sure my family didn't see I was scared. I knew I had to stay strong or else my family would suffer.
Well, the needle biopsy didn't yield a diagnosis either because the sample was crushed from the needle. It was frustrating but I knew there was a process to a diagnosis so we went to another option- surgery. I had a mediastinoscopy performed where they made an incision between my clavicles right under my neck and took a few samples from the two lymph nodes in my mediastinum. And yet again, it didn't give me a diagnosis. I had the pathologist from two hospital look at all the samples and no one could give us a clear diagnosis.
So we finally decided to remove a lymph node from my left side of my neck under my clavicle and that gave me a diagnosis of Hodgkin's Lymphoma.
The whole process of trying to find my diagnosis was very difficult because there was a whole month of my family and I left guessing. So many scenarios crossed our minds but I really didn't think about it being cancer. Again, I think I was in survival mode and I tried to keep things really light so that my family wouldn't worry. I had an amazing pulmonologist that really pushed so that we could get the diagnosis and treatment I needed. I believe you sometimes have to be aggressive if you want things done in the health care system and he was definitely my advocate. I wouldn't have changed anything that happened. Well, I might have drank a lot more water before my surgeries so that it wouldn't have been so difficult to find my veins. I also would have ate more of the jello from the hospital because I find myself craving their jello these days.
In total, it took a month of procedures and operations for them to finally give me a diagnosis. I had lost three pounds from not being able to eat before my surgeries and gained a couple of scars. At first, I was a bit sad for having the scars but now I proudly show them because I see them as medals of all the things I've gone through. I think they are reminders of what I've had to endure to get here.
lan8390 shared an experience
Oh No (Misdiagnosed): I began showing symptoms when I was 20 but they weren't very traditional symptoms to those with Hodgkin's. I couldn't breathe and had severe chest pain constantly. I went to my primary and was told I had asthma without a pulmonary function test. I was given many inhalers and steroids to help with my breathing but they never helped. I went to 5 other doctors and they all gave me the same diagnosis, without any medical tests.
One night, at my father's birthday dinner, I turned purple from not being able to breathe and was taken to the emergency room. The hospital staff didn't seem to treat my symptoms very seriously since seeing my previous diagnosis of asthma until my boyfriend demanded at least an xray. I was finally given a chest xray which revealed my lungs where completely covered in tumors and my lymph nodes were 10 times larger than they should be.
I was given an MRI to see how extensive the masses were and where it had spread. I left the emergency room without a clear diagnosis, tons of questions, and so many scenarios in my head.