My Story
Hi, my name is Barbara Bee and this is my bump story…
On October 2, 2012 I went to the doctor’s office to check out a bump I had found on my left clavicle. At the time, I thought it was truly nothing, but have always thought in my head “bumps are bad”, so I had to go get it looked at. I now look back, and know how incredibly lucky I am.
So rewind a few weeks prior…I had slept on my side funny and woke with a crink in my deck. Instinctively I rubbed my neck to find a hard and fixed bump on my left collar bone. I didn’t think much of it at the time, and thought I had pulled a muscle or something. After it didn’t go away I wanted to get it checked out and see why this bump was not going away on its own! Wrote my doctor and asked him to do a physical but also to look at this bump on my neck. My doctor scheduled an x-ray prior to my visit so that we can look at the results together.
Ten days after realizing I had a bump on my deck, I was sitting in my doctor’s office looking at the results of my x-ray. The x-ray showed that it was “soft tissue”, which had my doctor’s face drop as he was reading the results…and instantly I was worried. Of course, only at that moment does he turned to me and said “Don’t worry………yet. It could be an infection or something else….”. I was thinking “something other than what?!” “Something like the ‘C’ word ?!?!” “Something, like CANCER?!”. Ummmm, No, no way…not me.
So the doctor assured me not to worry, however he had to do all the appropriate tests to rule out cancer. What? Ugh? Fine. The following week I had a neck CT. Then, two days later, one day before I was supposed to go to Cancun for vacation, I got a call from the hospital. ‘Barbara, you have a growth from your left lymph node in your neck down to the middle of your chest’. Numbness. Shock. White Noise. Is this really happening??….
Needless to say the doctor insisted I cancel my travels, and 2 days later I had a second CT of my chest. A few days after that, I went to the chest surgeon who brought up my scans. The surgeon told me he wouldn’t be my doctor moving forward (no surgery needed), but he will give me the preliminary results from my scans. “See….here….and then here and here” He says to me as he is scrolling through the CT scans that are impossible for a normal human being to comprehend. He was showing me 3 places where I had swollen lymph nodes: 1 on my neck and 2 by my thymus gland (chest). “Basically you have Hodgkin’s Lymphoma. Probably Stage 1 or 2 but the biopsy and PET scan will tell you for sure”.
And that was that….I was just told that I have cancer. Crap!
That Friday, on 10/2
6/2012, I had my lymph node biopsy. A week later, 11/2/2012 the final results came in that I have Non-Hodgkin’s Lymphoma– (Diffuse Large B Cell w/ features compatible with Primary Mediastinal). So the doc was incorrect about Hodgkin’s vs. Non-Hodgkins….yet he wasn’t mistaken about ‘cancer’. Next he brought up my CT scans again. He showed me the diseased areas (diseased just sounds so horrible!). Most of it appears in my mediastinum, which means my chest – and this is where there is much concern. It was explained to me that Non-Hodgkins (NH) Diffuse Large B Cell is the most common NH lymphoma, however it deriving from the Primary Mediastinal is rare and makes this a bit more complicated. See, the primary mediastinum is basically the center of my chest and very near the heart. From my scans, it shows that these aggressively growing nodes are beginning to, if not already pressing against my heart. MY HEART! So now what?!
Deep breath….ok, so my first appointment with Oncology came next, on November 7, 2012. I took as my ‘Orientation to Cancer’ day. Sounds like pretty exciting stuff, huh?! *screaming inside*. In all seriousness, I learned a lot, and so much more moving forward.
My brother, David, and (other mother) Pam joined me. I even had the coordinator from Thoracic surgery there to support me. It was a crowded room but I did not mind, I wanted the support. The doctor finally came in; his name is Dr. Yeh (pronounced “yay”). Kinda funny, if you think about it….nothing “yay” about this. Good thing was, he was more humanized than most doctors, thorough and honest. The thorough and honest part is what I wanted, and appreciated – yet so hard to take in much of the news that came my way. It was, to say the least…a truck load of information.
We went over my diagnosis again. He asked me what I knew, and I rambled off the medical title given to me “I have Non-Hodgkin’s Lymphoma, Diffuse Large B Cell w/ features compatible with Primary Mediastinal”. He eyes perked up a bit, I can tell he was surprised or a bit amused that I was able to repeat it all back to him. “I know that it is an aggressive growing cancer”. He nods in agreement.
Percentages came next…this is where it got very scary and very real. This type of disease has a 30-50% curable rate (not survival rate). This means 30-50% are fully cured with no remission, after 5 years. My doc told me that because of my age, good health, and that it appears to be early detection that I am 50/50. Wow…50% sounds like a coin flip, rush and roulette, paper rock scissors, black or white…yep for the first time I felt the fear rush through my body…I cannot believe he is talking about ‘me’. Ludicrous! Absurd!! Preposterous!!! But no….no, this IS me…I have to digest, I must acknowledge, it is accepted, and now I have to put on my big girl chonies.
Next was my treatment cocktail:
So rewind a few weeks prior…I had slept on my side funny and woke with a crink in my deck. Instinctively I rubbed my neck to find a hard and fixed bump on my left collar bone. I didn’t think much of it at the time, and thought I had pulled a muscle or something. After it didn’t go away I wanted to get it checked out and see why this bump was not going away on its own! Wrote my doctor and asked him to do a physical but also to look at this bump on my neck. My doctor scheduled an x-ray prior to my visit so that we can look at the results together.
Ten days after realizing I had a bump on my deck, I was sitting in my doctor’s office looking at the results of my x-ray. The x-ray showed that it was “soft tissue”, which had my doctor’s face drop as he was reading the results…and instantly I was worried. Of course, only at that moment does he turned to me and said “Don’t worry………yet. It could be an infection or something else….”. I was thinking “something other than what?!” “Something like the ‘C’ word ?!?!” “Something, like CANCER?!”. Ummmm, No, no way…not me.
So the doctor assured me not to worry, however he had to do all the appropriate tests to rule out cancer. What? Ugh? Fine. The following week I had a neck CT. Then, two days later, one day before I was supposed to go to Cancun for vacation, I got a call from the hospital. ‘Barbara, you have a growth from your left lymph node in your neck down to the middle of your chest’. Numbness. Shock. White Noise. Is this really happening??….
Needless to say the doctor insisted I cancel my travels, and 2 days later I had a second CT of my chest. A few days after that, I went to the chest surgeon who brought up my scans. The surgeon told me he wouldn’t be my doctor moving forward (no surgery needed), but he will give me the preliminary results from my scans. “See….here….and then here and here” He says to me as he is scrolling through the CT scans that are impossible for a normal human being to comprehend. He was showing me 3 places where I had swollen lymph nodes: 1 on my neck and 2 by my thymus gland (chest). “Basically you have Hodgkin’s Lymphoma. Probably Stage 1 or 2 but the biopsy and PET scan will tell you for sure”.
And that was that….I was just told that I have cancer. Crap!
That Friday, on 10/2
6/2012, I had my lymph node biopsy. A week later, 11/2/2012 the final results came in that I have Non-Hodgkin’s Lymphoma– (Diffuse Large B Cell w/ features compatible with Primary Mediastinal). So the doc was incorrect about Hodgkin’s vs. Non-Hodgkins….yet he wasn’t mistaken about ‘cancer’. Next he brought up my CT scans again. He showed me the diseased areas (diseased just sounds so horrible!). Most of it appears in my mediastinum, which means my chest – and this is where there is much concern. It was explained to me that Non-Hodgkins (NH) Diffuse Large B Cell is the most common NH lymphoma, however it deriving from the Primary Mediastinal is rare and makes this a bit more complicated. See, the primary mediastinum is basically the center of my chest and very near the heart. From my scans, it shows that these aggressively growing nodes are beginning to, if not already pressing against my heart. MY HEART! So now what?!
Deep breath….ok, so my first appointment with Oncology came next, on November 7, 2012. I took as my ‘Orientation to Cancer’ day. Sounds like pretty exciting stuff, huh?! *screaming inside*. In all seriousness, I learned a lot, and so much more moving forward.
My brother, David, and (other mother) Pam joined me. I even had the coordinator from Thoracic surgery there to support me. It was a crowded room but I did not mind, I wanted the support. The doctor finally came in; his name is Dr. Yeh (pronounced “yay”). Kinda funny, if you think about it….nothing “yay” about this. Good thing was, he was more humanized than most doctors, thorough and honest. The thorough and honest part is what I wanted, and appreciated – yet so hard to take in much of the news that came my way. It was, to say the least…a truck load of information.
We went over my diagnosis again. He asked me what I knew, and I rambled off the medical title given to me “I have Non-Hodgkin’s Lymphoma, Diffuse Large B Cell w/ features compatible with Primary Mediastinal”. He eyes perked up a bit, I can tell he was surprised or a bit amused that I was able to repeat it all back to him. “I know that it is an aggressive growing cancer”. He nods in agreement.
Percentages came next…this is where it got very scary and very real. This type of disease has a 30-50% curable rate (not survival rate). This means 30-50% are fully cured with no remission, after 5 years. My doc told me that because of my age, good health, and that it appears to be early detection that I am 50/50. Wow…50% sounds like a coin flip, rush and roulette, paper rock scissors, black or white…yep for the first time I felt the fear rush through my body…I cannot believe he is talking about ‘me’. Ludicrous! Absurd!! Preposterous!!! But no….no, this IS me…I have to digest, I must acknowledge, it is accepted, and now I have to put on my big girl chonies.
Next was my treatment cocktail:
- 6 cycles of R-CHOP chemotherapy, 1x3weeks
- Radiation post chemo at the mediastinum and neck
