After my official diagnosis, I was told that my treatment would be 6 months of chemotherapy (ABVD). Before treatment could begin, they needed to check my heart and lungs (since the chemo drugs can be hard on the heart and lungs), and get a "port" installed to allow the injection of the chemo drugs without hooking-up an IV.
I ended-up pushing the date of the tests and the surgery to the following week partially because I had plan with my girlfriend that week, but also because I felt I needed one more "normal" week to emotionally prepare for what lay ahead.
The heart and lung tests were on 6/30, and the surgery was 7/1. My friend Tawni took me to the surgery and back home again afterwards.
Everything came out fine for the tests (lung functionality was actually above average), and the surgery went smoothly, and I was scheduled for my first treatment on 7/3.
Tuesday, July 22, 2008
Saturday, July 19, 2008
My story pre-diagnosis
Although I was not diagnosed with Cancer until June 13th, 2008, my story actually begins in December of 2007 when I got my first swollen lymph node on my neck following an odd viral illness. I didn't think much of the swollen node, associating it with the illness I had previously.
In January the node was still swollen, so I went to my regular doctor, who was concerned enough about the node to refer me to a head and neck specialist for a biopsy. I got the biopsy, and never heard back from that office, so I assumed that no news is good news. Also, the node reduced in size on its own following the biopsy.
In April, I started having strange physical symptoms: fever and chills during the evening before bed, and drenching night sweats. I just thought I was on the verge of catching something for a long time.
By May I still had these symptoms, but also developed a persistent cough and more swollen lymph nodes on my neck. That's what finally brought me back to the doctor. The doctor gave me an antibiotic thinking I had a low-grade infection, but also ordered a CT Scan to rule out anything more serious.
While the antibiotic didn't do anything other than make me feel run down, the CT scan showed enlarged lymph nodes throughout my entire body. At this point my doctor suspected some kind of lymphoma (Hodgkin's or non-Hodgkin's), and referred me to an oncologist.
(As a side note, he checked with the head and neck specialist about the biopsy in January only to find out that it never occurred - they apparently failed to get enough cells from the node to do the biopsy. They also failed to tell me or my doctor this!)
In early June I had my first appointment with the oncologist who also suspected a lymphoma, and ordered a PET scan (to check for Cancer, and where it resided if present), and surgical removal of an entire lymph node from my right armpit for a definitive biopsy.
The surgery to remove a lymph node for biopsy was on 6/9. They removed one from my right armpit, as that was the only one that was swollen and externally accessible. I was quite glad to get it removed, because it hurt like crazy. This was also my first surgery ever, at 34, and I was quite frightened. I hated the idea of being put under. Other than my fear, the surgery went smoothly, however. My brother was the one tot ake me to and from the surgery.
The PET scan results came first, revealing that I did indeed have Cancer, so she scheduled a bone marrow biopsy in her office to see if the Cancer had spread there. Even with the local anesthetic, this procedure was quite painful, as it involved puncturing the back of my hip bone and extracting some marrow with a needle from there. This was Thursday 6/12 I think.
When I got my biopsy results back, I found out that it was Hodgkin's lymphoma, mixed cellularity subtype. Based on the PET scan results and my symptoms, it was determined to be stage 3B - which means spread through the body on both sides of the diaphram, and that "B" symptoms were present (night sweats, fever, etc). The bone marrow biopsy showed the the Cancer had not yet spread there, however. I was told that the odds of me being alive and Cancer free in 5 years was 65%.
(Here's a good reference for Hodgkin's Lymphoma, including an explanation of subtypes and disease stage.)
As a side note, I got my diagnosis on Friday, June 13th. That's right: Friday the 13th!
In January the node was still swollen, so I went to my regular doctor, who was concerned enough about the node to refer me to a head and neck specialist for a biopsy. I got the biopsy, and never heard back from that office, so I assumed that no news is good news. Also, the node reduced in size on its own following the biopsy.
In April, I started having strange physical symptoms: fever and chills during the evening before bed, and drenching night sweats. I just thought I was on the verge of catching something for a long time.
By May I still had these symptoms, but also developed a persistent cough and more swollen lymph nodes on my neck. That's what finally brought me back to the doctor. The doctor gave me an antibiotic thinking I had a low-grade infection, but also ordered a CT Scan to rule out anything more serious.
While the antibiotic didn't do anything other than make me feel run down, the CT scan showed enlarged lymph nodes throughout my entire body. At this point my doctor suspected some kind of lymphoma (Hodgkin's or non-Hodgkin's), and referred me to an oncologist.
(As a side note, he checked with the head and neck specialist about the biopsy in January only to find out that it never occurred - they apparently failed to get enough cells from the node to do the biopsy. They also failed to tell me or my doctor this!)
In early June I had my first appointment with the oncologist who also suspected a lymphoma, and ordered a PET scan (to check for Cancer, and where it resided if present), and surgical removal of an entire lymph node from my right armpit for a definitive biopsy.
The surgery to remove a lymph node for biopsy was on 6/9. They removed one from my right armpit, as that was the only one that was swollen and externally accessible. I was quite glad to get it removed, because it hurt like crazy. This was also my first surgery ever, at 34, and I was quite frightened. I hated the idea of being put under. Other than my fear, the surgery went smoothly, however. My brother was the one tot ake me to and from the surgery.
The PET scan results came first, revealing that I did indeed have Cancer, so she scheduled a bone marrow biopsy in her office to see if the Cancer had spread there. Even with the local anesthetic, this procedure was quite painful, as it involved puncturing the back of my hip bone and extracting some marrow with a needle from there. This was Thursday 6/12 I think.
When I got my biopsy results back, I found out that it was Hodgkin's lymphoma, mixed cellularity subtype. Based on the PET scan results and my symptoms, it was determined to be stage 3B - which means spread through the body on both sides of the diaphram, and that "B" symptoms were present (night sweats, fever, etc). The bone marrow biopsy showed the the Cancer had not yet spread there, however. I was told that the odds of me being alive and Cancer free in 5 years was 65%.
(Here's a good reference for Hodgkin's Lymphoma, including an explanation of subtypes and disease stage.)
As a side note, I got my diagnosis on Friday, June 13th. That's right: Friday the 13th!
Friday, July 18, 2008
Intro
My name is Karl, and I have been diagnosed with Hodgkin's Lymphoma (Cancer of the lymphatic system). I am 34, and otherwise in good health, so this diagnosis was quite a shock to me. I have started this blog to talk about my feelings and experiences all in one spot (and not clutter up my "regular" blog). Also it seems like a good place to keep track of specific information that may get lost in the shuffle along the way.
Any post with the label "boring" is mostly dry and factual, serving as a reminder to myself of the order of events, specific dates for appointments, etc.
All visitors are welcome, friends, family and strangers with an interest in the topic alike.
Any post with the label "boring" is mostly dry and factual, serving as a reminder to myself of the order of events, specific dates for appointments, etc.
All visitors are welcome, friends, family and strangers with an interest in the topic alike.
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