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Just diagnosed. Heck of a week...

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  • Just diagnosed. Heck of a week...

    Recently, I noticed that my left testicle felt harder than the one on the right. I went to my doctor and she could not feel what I was reporting but to be safe, she ordered an ultrasound. Given the fact that she could not feel any difference between the two, I figured I was in the clear but because of my complicated health history, I agreed that it should be checked out. The ultrasound was at noon last Friday and I could just tell that they had found something. I have enough experience with medical professionals that I've figured out their tells. The radiologist was chatty at first, but she got quiet when she reached my left testicle. She seemed tense and even after I got dressed, she averted eye contact. It reminded me of a few years ago when my pregnant wife had to go to the ER because she just knew something was wrong. The radiologist on that day started out pleasant and chatty, but then he saw something that he knew but could not tell us directly. We sat in silence and dread until the resident came to tell us the fetus was dead.

    A few hours after my ultrasound, my fears were confirmed. Experience has taught me that when a doctor calls just a few hours after a test, that its going to be bad news. 11 years ago, I felt like I was finally entering adulthood. I had just recently moved in with my girlfriend after dating over long-distance for 2 years. I had two jobs and biked all over the up and coming city where we lived. My girlfriend and I were in love and building a life together. She had recently graduated from college and I planned on living there a year and gaining in state status and completing the degree I that I had been putting off. I felt like I was finally getting it together when I suddenly began to fall apart.

    I started having strange fevers and night-sweats. I fell into a deep depression and my joints ached. I developed a strange rash under my eyes. I knew something was wrong. Life was so good and yet I was coming apart at the seams. Things got worse. I couldn't eat. My short-term memory started to decline and the fevers and night sweats became an everyday experience. I finally went to the hospital and my blood counts were dangerously low. They tested for HIV and took a bone marrow biopsy. They seemed utterly stumped by what was happening to me. They discharged me from the ER and told me to follow up with an oncologist, but things got worse and I was back the next day. They ran every test and scan. They took a lymph node out of my armpit and I was probed in every horrifying and humiliating way. Still, my blood counts got worse and worse. After a week, I was discharged and again referred to an oncologist. I didn't have cancer, it turned out. I had lupus and it was destroying my kidneys. I was too sick to return to the house where my girlfriend and I had made our home.I moved back into my mom and dad's house and they took turns caring for me. My girlfriend drove 4 hours every weekend to be with me. For months, everyone looked at me like I was going to die at any moment.

    I was put onto a very high dose of prednisone to suppress my over active immune system. I descended into psychosis as the medicine prevented me from sleeping for weeks on end. I heard voices and had hallucinations. I had my blood drawn every 3 days so that doctors could see if the treatment was working. It was not. One Friday, I had my blood work drawn and as I entered my parents' house the phone was ringing. It was my doctor and I'll never forget what she told me. "Your blood counts are dangerously low. You need to get someone to drive you to the hospital now. If no one is there to drive you, call an ambulance. I'll be waiting there for you." I learned the meaning of the word anguish when I told my mother what the doctor had said. I'll never forget seeing her fear for her son's life.

    By the time I got to the hospital, I my vision was so blurred that I signed the paperwork sideways. I had a crushing migraine and was barely capable of standing. I later learned I was in TTP. I was moments away from dying. I was rushed to the ICU where I was given multiple blood transfusions over the course of 3 or four days. Still, my blood counts wouldn't rise. I was given IV steroids and a chemotherapy drug to suppress my immune system. I was eventually transferred to a world class hospital and spent three weeks clinging to life. I survived, but it would be a long time before recovered physically or emotionally.

    It took years before I could even deal with what I had been through. My girlfriend stood by me throughout and we are now married. She suffered such a psychological toll that our relationship nearly ended. It took 9 more years to finish the degree that I had been planning to finish when lupus got in the way. I got my first real job and we had our first child. I finally felt as though I had put all of that behind me when I felt that lump just a couple weeks ago.

    So when the phone rang, I knew that I was sick. My PCP informed me that they had found something and that I needed to see a urologist ASAP. Naturally, I spent the whole weekend dreading the news. How I wish I had scheduled the ultrasound on a Monday so that I didn't have a weekend of silence where my imagination could run wild. The urologist called Monday afternoon and set an appointment for the next morning. I checked in to the clinic an hour early and they called me back immediately. They were anxious to see me and I knew what it meant. The doctor got right to the point, I had a tumor and she was 99 % sure it was cancer. The only way to diagnose was to remove it and she wanted to perform the surgery the next morning. I wasn't shocked. I wasn't scared. I was angry. Here I was feeling safe and secure in my wellness only to have my bubble burst once again and my loved ones would once again be dragged along with me.

    I hope that surgery took care of it, but I'll find out next week. Thanks for reading this and sharing all of your experiences.

  • #2
    Wow, you have been through a heck of a journey. You should have CT scans and tumor marker tests to go along with your diagnosis. Please let us know those results when you get them! Chances are good that your TC ride won't be as wild and scary as your Lupus ride, thankfully.
    6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
    6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
    7/7/15: bHCG 56, AFP 42, LDH 322
    7/13/15 - 9/18/15: 4xEP
    10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
    10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
    4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
    4/20/16: RPLND @ IU - teratoma only!
    9/18/2017 all clears up to this date!

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    • #3
      Will do. CT is Monday and waiting on results from yesterdayís orchiectomy. Thanks for the encouragement. Iím glad to have found this community. Iíll post results as I get them.

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      • #4
        My urologist just called to give me the pathologistís report. I had a seminoma and there was so sign that it had spread beyond the testical. She told me that my blood work was good but I was to relieved to really hear the details. Nevertheless, she indicated that I may be able to avoid chemo/radiation. Iíll have a CT scan on Monday and a consult with urology sometime later in the week.

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        • #5
          So far so good! TC can spread without elevating markers, although that mode isn't as common. This is why the CT is also an important part of staging. Let us know when you get the CT results!
          6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
          6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
          7/7/15: bHCG 56, AFP 42, LDH 322
          7/13/15 - 9/18/15: 4xEP
          10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
          10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
          4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
          4/20/16: RPLND @ IU - teratoma only!
          9/18/2017 all clears up to this date!

          Comment


          • #6
            Crazy story!! Hope this story ends with this surgery. It will never be fair or just or make sense, but itís so important to have your loved ones there for you, it makes all the difference in the world! Not everyone is lucky to have the support they need

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            • #7
              You have been through a lot! Hopefully, you will be able to go on surveillance after CT Scan. Keep us updated.
              Son Grant
              dx 12/21/16 at age 17

              BEP x3
              Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
              2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
              Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.
              Grant is enjoying his senior year in High School Cancer Free!

              Comment

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