The day before my second opinion was difficult. You're hopeful for best case scenario but preparing yourself for the worst. In fact my minnd was racing all day, and that evening wasn't much better. An 8 am appointment meant I was up at 6, and out of the door by 6:50.
My follow up appointment was slightly uneventful, but still very emotional. Giving your story, your account of everything you're able to put pieces together and a pattern became very evident, even though it wasn't at the time. My case was quickly reviewed and a diagnosis was made with a plan of action. I was going to undergo chemotherapy treatment. After a series of questions about side effects and the likelihood of symptoms I would experience, we decided that time was important and treatments would start by weeks end.
The first doctor I happened to see thought that having a port installed would be beneficial for the treatments. However the second opinion doctor didn't feel the urgency to have a port installed but with my history of having blood drawn I decided that there was no other option. I needed a port if I wanted to make this experience as good as possible.
So just like that, appointments were made and my chemotherapy journey begins. I ultimately decided to go with my second opinion doctor. With a rare form of cancer, I felt that I needed to see a team who is familiar with my particular type and has seen it often enough. I'm scared, and I'm hoping I'm making the right choice by using a nationally and regionally ranked hospital.
The Biopsy
Friday, January 27, 2017
Classic Hodgkin's Lymphoma is generally detected early due to the symptoms it manifests into. The way this particular cancer spreads, it's considered one of the most treatable cancers. The most noteable side effect is swelling of the lymph nodes in the neck or under arms. This was the symptom that led me to advance radiology for an ultrasound. At the time this was my primary symptom, but as time progressed my symptoms became much worse. Shortly after an abnormal ultrasound reading, I was sent to a surgeon who specializes in breast cancer. She suggested a biopsy, stating it would be the best method for ruling out cancer and would allow us to hopefully get answers quick.
The biopsy was an interesting processes. I'd have to say I think the anticipation leading up to the actual test was much worse than the test itself. To prepare for the biopsy, which is a test that collects cell samples from multiple sites within a space for sample, a needle is injected to numb the area. I was told this was the not painful part, however except for a quick prick it was relatively painless. The actually biopsy itself is a click followed by a short buzzing, in my instance, the biopsy machine collected 10 samples from two lymph nodes under my armpit. A small titanium clip was also placed in one of the lymph nodes as a marker. This is a controversial subject, but so far I haven't had any adverse reactions. My understanding of these clips is to make the lymph node that was biopsied distinguishable for future reference. For instance in the future if I had another swollen node it would be easy to tell if the same node was swollen again or if another node now swollen. Biopsies are treated as out-patient surgeries. You dress in a hospital gown, they prep the surgical sight and send you home with recovery instructions. The list was relatively simple; ice for 4-6 hours, no heavy lifting and keep the bandages on for 24 hours.
And then you wait. There was an interesting Article by the New York Times that discusses how women's cortisol levels fluctuate during the great waiting game. Woman who have been diagnosed with cancer and woman who have yet to hear any news regarding their delayed biopsy results on days 3-5 without being told of the hold up, have levels that measure the same as those that were given a cancer diagnosis. My point with this story is to tell you that the waiting game is brutal. I had my biopsy completed on a Friday, Friday the 13th to be exact. I should have known never to have surgery on Friday the 13th. All kidding aside, I received my results back on Wednesday. With the weekend, it ended up being 5 days of waiting. And then the call came, the call you hope results with an "everything is normal" response. However in my instance, the surgeon calls as I'm loading up two kids in the car after an amazingly wonderful lunch with my aunt on a remarkably windy day. I hear the words cancer, lymphoma and I'm being sent to see a specialist, an oncologist, someone who knows more. I just needed to make the call, as I scrambled to write down the correct name and number, as I know had a job to do. The oncologist had already been informed of my case and an appointment time lined up for me the following week. I think it's safe to say this was not quite how I imagined my day would go.
The oncologist visit in my instance was surprisingly uneventful. I would have to say the most eventful part of the visit was scheduling all follow up appointments that would allow us to stage the cancer and prepare for chemo.
The biopsy was an interesting processes. I'd have to say I think the anticipation leading up to the actual test was much worse than the test itself. To prepare for the biopsy, which is a test that collects cell samples from multiple sites within a space for sample, a needle is injected to numb the area. I was told this was the not painful part, however except for a quick prick it was relatively painless. The actually biopsy itself is a click followed by a short buzzing, in my instance, the biopsy machine collected 10 samples from two lymph nodes under my armpit. A small titanium clip was also placed in one of the lymph nodes as a marker. This is a controversial subject, but so far I haven't had any adverse reactions. My understanding of these clips is to make the lymph node that was biopsied distinguishable for future reference. For instance in the future if I had another swollen node it would be easy to tell if the same node was swollen again or if another node now swollen. Biopsies are treated as out-patient surgeries. You dress in a hospital gown, they prep the surgical sight and send you home with recovery instructions. The list was relatively simple; ice for 4-6 hours, no heavy lifting and keep the bandages on for 24 hours.
And then you wait. There was an interesting Article by the New York Times that discusses how women's cortisol levels fluctuate during the great waiting game. Woman who have been diagnosed with cancer and woman who have yet to hear any news regarding their delayed biopsy results on days 3-5 without being told of the hold up, have levels that measure the same as those that were given a cancer diagnosis. My point with this story is to tell you that the waiting game is brutal. I had my biopsy completed on a Friday, Friday the 13th to be exact. I should have known never to have surgery on Friday the 13th. All kidding aside, I received my results back on Wednesday. With the weekend, it ended up being 5 days of waiting. And then the call came, the call you hope results with an "everything is normal" response. However in my instance, the surgeon calls as I'm loading up two kids in the car after an amazingly wonderful lunch with my aunt on a remarkably windy day. I hear the words cancer, lymphoma and I'm being sent to see a specialist, an oncologist, someone who knows more. I just needed to make the call, as I scrambled to write down the correct name and number, as I know had a job to do. The oncologist had already been informed of my case and an appointment time lined up for me the following week. I think it's safe to say this was not quite how I imagined my day would go.
The oncologist visit in my instance was surprisingly uneventful. I would have to say the most eventful part of the visit was scheduling all follow up appointments that would allow us to stage the cancer and prepare for chemo.
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One Small, Scary Word.
Monday, January 23, 2017
It's funny to think how one can go from only knowing the name of a disease to knowing everything about that disease (or a virus or an illness) in only a few hours. Learning symptoms, triggers, statistics. It's kind of interesting to think how quickly one can immerse themselves when the information pertains to them, or someone they care about.
For me that disease was Hodgkin's Lymphoma. I was given a diagnosis of Hodgkin's Lymphoma on Friday, January 20. A diagnosis like this leaves you feeling small and vulnerable and having so many questions but very little answers. That's where the google searching begins...
I've learned about a virus that nearly all adults have, Epstein Barr Virus or EBV, a virus that 95% of the American population has, but never has a single symptom. Those that it does effect have a slew of symptoms. There is a strong correlation between EBV and Hodgkin's Lymphoma. I've learned that Hodgkin's Lymphoma is rare. It's slightly hereditary, but because it's so rare (approximately 8,500 Americans will be diagnosed with it this year) it only increases the risk slightly for my children.
What I'm learning about a cancer diagnosis is how quickly things move. In the last week I was able to meet with a wonderful oncologist, and have a slew of testing completed (pet/ct scan, echo-cardiogram and lung test) to verify where the cancer extends to and to ensure my body is healthy enough for chemotherapy. The irony in that statement...What I can say is, I'm eager to begin a regimen, the sooner I begin, the sooner I hope to be cured.
I've had many feelings about my diagnosis over the last few days. The most common thought I've had is how fortunate I feel to have a cancer that is treatable. A curable cancer, one that if you were given a choice of cancers is likely the one you'd pick because it's considered to be so treatable. I've had every imaginable emotion wash over me, but I think the hardest one to swallow is how I truly cannot do this alone. I'm constantly reminded of what a wonderful spouse I have and how amazing my children are. They have taken this diagnosis in great stride and I'm proud of the understanding and maturity that they have shown.
For me that disease was Hodgkin's Lymphoma. I was given a diagnosis of Hodgkin's Lymphoma on Friday, January 20. A diagnosis like this leaves you feeling small and vulnerable and having so many questions but very little answers. That's where the google searching begins...
I've learned about a virus that nearly all adults have, Epstein Barr Virus or EBV, a virus that 95% of the American population has, but never has a single symptom. Those that it does effect have a slew of symptoms. There is a strong correlation between EBV and Hodgkin's Lymphoma. I've learned that Hodgkin's Lymphoma is rare. It's slightly hereditary, but because it's so rare (approximately 8,500 Americans will be diagnosed with it this year) it only increases the risk slightly for my children.
What I'm learning about a cancer diagnosis is how quickly things move. In the last week I was able to meet with a wonderful oncologist, and have a slew of testing completed (pet/ct scan, echo-cardiogram and lung test) to verify where the cancer extends to and to ensure my body is healthy enough for chemotherapy. The irony in that statement...What I can say is, I'm eager to begin a regimen, the sooner I begin, the sooner I hope to be cured.
I've had many feelings about my diagnosis over the last few days. The most common thought I've had is how fortunate I feel to have a cancer that is treatable. A curable cancer, one that if you were given a choice of cancers is likely the one you'd pick because it's considered to be so treatable. I've had every imaginable emotion wash over me, but I think the hardest one to swallow is how I truly cannot do this alone. I'm constantly reminded of what a wonderful spouse I have and how amazing my children are. They have taken this diagnosis in great stride and I'm proud of the understanding and maturity that they have shown.
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