So, I met with my oncologist yesterday for the first time yesterday. I really like the guy... He's warm, reassuring and didn't talk down to me. He ordered a battery of tests (no surprise there) which we are waiting for insurance to approve, and will be scheduled for next week. Our first step will be a PET scan ( http://en.wikipedia.org/wiki/Positron_emission_tomography ) which will be used to figure out what stage of cancer I have. I will also have to have both heart and lung function tests to ensure that I am ok for chemotherapy, as it tends to damage those organs. Tuesday morning I will be having a surgical procedure to place a port in my chest, that can be accessed to draw blood and deliver chemo without having to constantly treat me like a pin cushion or burn up all of the veins in my arms. The following Monday (April 7th) I am scheduled for my new patient chemotherapy orientation, which will be an hour session telling me what to expect. I will be starting chemo that week. Somewhere in between I am being referred to a fertility specialist, as chemo tends to have a negative effect on fertility, and my doctor would like me to discuss options there, just in case. Seems like things are so many things to get together in a short amount of time, but I am glad that the long wait times seem to be over, and we can get down to the business of sending Bob packing.
When I was waiting for my diagnosis, I spent a lot of time on Dr. Google, and read a lot about people's experiences with Hodgkin's. I was scared to death of one of the diagnostic tests that they mentioned -- the bone marrow biopsy. Essentially, this test is performed while you're awake, laying face down on a table, while a doctor numbs you, then goes deeper and numbs you further, then does it again until they can reach the bone, then they take and essentially core out a piece of your bone to get at the marrow, so that they can tell if the cancer has gotten to the bone marrow. Sounds awesome, right? Well, while talking to my oncologist yesterday, I asked about that test, and he said that I will NOT have to have it done! Essentially the treatment wouldn't change if it did reach the bone marrow, as chemo will reach it there as well, so the only reason I'd have to have a bone marrow biopsy would be if I needed a bone marrow transplant. Woo hoo, good news!
I got a mini tour of the facility where I will be spending quite a bit of my time over the next few months having chemo. My doctor also mentioned that there were FOUR other women, all right around the same age as me, that all have Hodgkin's now and are going through treatment. So, I may be making some new friends.
I think that's it for now. I will update next week as the testing goes along. Now, who wants to come keep me company for my chemo?
Friday, March 28, 2014
Meet Bob
This is Bob.
I'd like you all to meet him now, while he's still around. Hi Bob!
Looking forward to getting rid of you!
I'd like you all to meet him now, while he's still around. Hi Bob!
Looking forward to getting rid of you!
Symptoms and diagnosis.
First, thank you you for coming to visit my blog. I decided that I would put this together for my family and friends so that I could update everyone in one place about what's going on, what we have done so far, and what's next. Also, maybe someone else that is just starting their journey with Hodgkin's may find my experiences helpful. I'm just starting myself, but I find it cathartic to write it all out.
Before we delve in, I just wanted to say that I am extremely fortunate. Hodgkin's lymphoma is one of the most curable types of cancer. If I had to have any type at all, I am extraordinarily thankful that it is this one.
A few months ago, I noticed a lump on the left side of my neck. I figured that it was likely just a swollen lymph node, and didn't think too much of it, but decided to keep an eye on it -- just in case. I mostly forgot about it, but occasionally I would do something or move in a certain way and my hands would brush against the lump, and I would think about it again. As I continued to work out and lose weight, and it became more and more visible. I finally decided that it was time to get it looked at.
Bright and early on February 20th I made my way to my appointment with my primary care doctor. He went through my chart, and examined me, asking me tons of questions. He decided to send me for blood work and a chest X-ray, and referred me to an ENT doctor.
The following Friday I met with my ENT. She examined me, felt the mass, scheduled me for a CT scan, and said that there were a few different possibilities for what it could be, including a brachial cleft cyst, an infection or lymphoma. I filled with dread when she said lymphoma. My primary care doctor had mentioned it as well, but only as a small possibility.
The wait between each appointment began to feel like an eternity... I waited another week for my CT scan, the results came back that my lymph nodes were involved and it wasn't a cyst. I had a needle biopsy done 4 days later, but the results came back as non diagnostic (not enough tissue to determine what it was) and I was scheduled for an open biopsy to remove a tissue sample for diagnosis. Then they were sent out for a second opinion. I was pretty sure when I came in the following Thursday, March 20th, that I wasn't getting good news.
I can't really describe the feeling of having your doctor tell you that you have cancer. It didn't matter that I had been mentally preparing myself for it, researching it every day obsessively and staying up every night consumed with anxiety. I was still floored. In the back of my head, a small part of me was just thankful to finally know what it is, but mostly I just sat and listened to my ENT telling me about Hodgkin's lymphoma, and referring me to my new oncologist.
I met with my oncologist yesterday, and will post all about that in a little while. In the mean time, though all of this is a bit overwhelming, I am positive that I have the strength to beat this and come through stronger than ever. Oh, and in reference to the name of this page -- A close friend mentioned earlier that the word cancer is scary and taboo... So in an effort to minimize some of that I have decided that my mass has a name, and it is Bob. How can Bob be scary?
Before we delve in, I just wanted to say that I am extremely fortunate. Hodgkin's lymphoma is one of the most curable types of cancer. If I had to have any type at all, I am extraordinarily thankful that it is this one.
A few months ago, I noticed a lump on the left side of my neck. I figured that it was likely just a swollen lymph node, and didn't think too much of it, but decided to keep an eye on it -- just in case. I mostly forgot about it, but occasionally I would do something or move in a certain way and my hands would brush against the lump, and I would think about it again. As I continued to work out and lose weight, and it became more and more visible. I finally decided that it was time to get it looked at.
Bright and early on February 20th I made my way to my appointment with my primary care doctor. He went through my chart, and examined me, asking me tons of questions. He decided to send me for blood work and a chest X-ray, and referred me to an ENT doctor.
The following Friday I met with my ENT. She examined me, felt the mass, scheduled me for a CT scan, and said that there were a few different possibilities for what it could be, including a brachial cleft cyst, an infection or lymphoma. I filled with dread when she said lymphoma. My primary care doctor had mentioned it as well, but only as a small possibility.
The wait between each appointment began to feel like an eternity... I waited another week for my CT scan, the results came back that my lymph nodes were involved and it wasn't a cyst. I had a needle biopsy done 4 days later, but the results came back as non diagnostic (not enough tissue to determine what it was) and I was scheduled for an open biopsy to remove a tissue sample for diagnosis. Then they were sent out for a second opinion. I was pretty sure when I came in the following Thursday, March 20th, that I wasn't getting good news.
I can't really describe the feeling of having your doctor tell you that you have cancer. It didn't matter that I had been mentally preparing myself for it, researching it every day obsessively and staying up every night consumed with anxiety. I was still floored. In the back of my head, a small part of me was just thankful to finally know what it is, but mostly I just sat and listened to my ENT telling me about Hodgkin's lymphoma, and referring me to my new oncologist.
I met with my oncologist yesterday, and will post all about that in a little while. In the mean time, though all of this is a bit overwhelming, I am positive that I have the strength to beat this and come through stronger than ever. Oh, and in reference to the name of this page -- A close friend mentioned earlier that the word cancer is scary and taboo... So in an effort to minimize some of that I have decided that my mass has a name, and it is Bob. How can Bob be scary?
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