Today has been a lot of phone calls and managed to come into the office for a little while. I even got to take a 'real' shower today - no one had to wash my hair in the sink!
The next few days will keep me nice and busy. I am scheduled to get another chest x-ray tomorrow morning (9:15am), I think they want to make sure my lungs are clear pre-treatment. The nature of what I have, the first place it could go would be my lungs.
Friday, (8:15am) I am going to be meeting with Dr. Chen, my oncologist to talk about everything and to have all the questions answered, so it's getting closer! Both Dad and Mom will be joining me for the appointment.
At about (10:30am) on Friday, I will also check back into the hospital to get my port put in. I think the surgery is actually scheduled for noon, but they will be putting me under again...
At first, they were having a hard time getting everything in this week. They tried having me move the oncologist appointment to Monday, but there was NO way I was going to sit on this for another few days....each day everything waits is another day that I am not being treated. So I pleaded my case and they moved things around for me :)
So it looks like things are getting done and starting to fall into place......
Wednesday, April 30, 2008
Tuesday, April 29, 2008
Diagnosis
The verdict is:
Nodular Sclerosis Hodgkin's Disease (NSHD)
Here is a little information about it: is the most common subtype of HD and accounts for 65% to 80% of all cases. It tends to occur in adolescents and young adults (under 50 years), and it is the only form of HD that strikes more women than men. The disease typically arises in the lymph nodes of the chest and other sites above the diaphragm, the large abdominal muscle that controls breathing. Bulky tumor growth may occur in the mediastinum (organs and tissues of the middle chest) and it may spread to the tissues of the lungs. Many NSHD patients are diagnosed with Stage 2 disease.
I have an appointment with an oncologist - Dr. Chen, on Friday (10:30 am). He will be able to answer all my questions; when treatment will start, what it will be, how long and so on...so still don't have answers. I will be getting a port put in my chest and I am waiting on pre-approval for that right now. I am hoping to get in this week for both the port and onocologist meeting so I can get this thing going.
My plan, for the time being, it to roll into work for a few hours each day, and to try to keep my life up beat. That's all for now...........
Nodular Sclerosis Hodgkin's Disease (NSHD)
Here is a little information about it: is the most common subtype of HD and accounts for 65% to 80% of all cases. It tends to occur in adolescents and young adults (under 50 years), and it is the only form of HD that strikes more women than men. The disease typically arises in the lymph nodes of the chest and other sites above the diaphragm, the large abdominal muscle that controls breathing. Bulky tumor growth may occur in the mediastinum (organs and tissues of the middle chest) and it may spread to the tissues of the lungs. Many NSHD patients are diagnosed with Stage 2 disease.
I have an appointment with an oncologist - Dr. Chen, on Friday (10:30 am). He will be able to answer all my questions; when treatment will start, what it will be, how long and so on...so still don't have answers. I will be getting a port put in my chest and I am waiting on pre-approval for that right now. I am hoping to get in this week for both the port and onocologist meeting so I can get this thing going.
My plan, for the time being, it to roll into work for a few hours each day, and to try to keep my life up beat. That's all for now...........
Monday, April 28, 2008
The Waiting Game
It's Monday and tomorrow will be the day I will finally have a plan. Not much has changed, still feel strong, my neck isn't as tight (mobility is coming back) and have the same ADD as usual. I am just trying to stay busy with work emails and crappy TV. It's been a long wait and definitely having the emotional ups and downs of the unknown. When we know, we will let you all know.
Mom is flying right now and should be here soon. Dad has called me at least three times today as well as Brent - love those guys. I wanted to thank everyone for the notes, messages etc. I really appreciate it and want nothing more to have this be nothing. More tomorrow............
Love, E
Family time with the Howarth's - This is Brent feeding Akira Beer (doesn't get better then that)
Mom is flying right now and should be here soon. Dad has called me at least three times today as well as Brent - love those guys. I wanted to thank everyone for the notes, messages etc. I really appreciate it and want nothing more to have this be nothing. More tomorrow............
Love, E
Family time with the Howarth's - This is Brent feeding Akira Beer (doesn't get better then that)
Sunday, April 27, 2008
Friday Surgery
This morning went smooth. I was at the hospital by 6:30 this morning. Matt and Dad both spent the night. Matt didn't come to the hospital, just Brent, Dad and I. I was taken in for surgery about 8:30 am. They knocked me out and the surgery was over before I knew it. I woke up with a 2-3 " scar around my colar bone. It's pretty swollen, stiff, but not painful. I have some good drugs and went on my way. The doctor came and spoke to both Brent and Dad and said it looks like Hogkins and he thinks I will be doing both Chemo and radiation. I am going to go see him on Tuesday (i guess the 48 hour rule only applies to Business days) On Tuesday will be the day to come up with the plan and the best options based on all the facts. My mom is planning on flying here on Sunday so she can be with me through Tuesday to help come up with the plan...especially because she always knows the right questions to ask :)
That's a picture of the scar....
Catching you up.........
I found a mass in my neck last tuesday, the 15th. I called Dr mom and kept an eye on it for about 24-48 hours and after no change, I called my PCP. I was in there thurs am. She was very surprised at the size, started me on antibiotics and scheduled me for a ct scan friday. We were thinking possible thyriod or lymph node....no alarms yet.
I got a call monday morning that the ct scan indicated a swollen lymph node and that she wanted me to see a surgeon and for him to assess it.
The surgeon felt around my neck, armpit, and stomache on Tuesday morning and immediately sat down - it's lymphoma. He began talking about Hodgkins and non-hodgkins and i just sat there staring at him. I was in shock, a single tear went down my face and he began asking about if I came there alone, who do I have for support, he gave me a number of a shrink I could call. All I was thinking was WTF! It's a swollen lymph node, not cancer...How can he know this by just feeling my neck, he hasn't tested anything!
I just wanted out of there. So I wandered to my car, breaking down in there for a while and called mom. She called the surgeon right away - he gave me his personal cell number. She called me back and he said (to her) there are more lumps, besides the one I can see, that he felt - so he's "definitive" it's lymphoma.
To be safe, I have had blood work taken twice, went in for a chest x-ray yesterday and had a pregnancy test (no worries, not pregnant). I am scheduled to have the mass and nodes removed tomorrow morning. Both my dad and Brent will be there and we have lists of questions to ask. We should have the results of the biopsy on Sunday. I am planning on retreating to dads house most of the weekend to wait for the results.
If you want to learn more about it all, check out: http://www.leukemia-lymphoma.org/all_page?item_id=7030
For me, right now, I am on a roller coaster ride. One second I am fine, next I am crying my eyes out. I think the hardest thing for me to swallow is that my life could change. Plans and things I was looking forward to are quickly getting pushed aside (aka. Spain). It's the not knowing that is killing me.
There are three possible things that may happen: 1) nothing, he was wrong and I am fine; 2) Hodgkins, the better cancer, which would allow me to live my life as "normal" with just radiation a few times a week and if it is still stage 1 cancer, would be finished with all treatment by June; 3) Non-hogkins and we won't talk about that one, because it's not an option.
I got a call monday morning that the ct scan indicated a swollen lymph node and that she wanted me to see a surgeon and for him to assess it.
The surgeon felt around my neck, armpit, and stomache on Tuesday morning and immediately sat down - it's lymphoma. He began talking about Hodgkins and non-hodgkins and i just sat there staring at him. I was in shock, a single tear went down my face and he began asking about if I came there alone, who do I have for support, he gave me a number of a shrink I could call. All I was thinking was WTF! It's a swollen lymph node, not cancer...How can he know this by just feeling my neck, he hasn't tested anything!
I just wanted out of there. So I wandered to my car, breaking down in there for a while and called mom. She called the surgeon right away - he gave me his personal cell number. She called me back and he said (to her) there are more lumps, besides the one I can see, that he felt - so he's "definitive" it's lymphoma.
To be safe, I have had blood work taken twice, went in for a chest x-ray yesterday and had a pregnancy test (no worries, not pregnant). I am scheduled to have the mass and nodes removed tomorrow morning. Both my dad and Brent will be there and we have lists of questions to ask. We should have the results of the biopsy on Sunday. I am planning on retreating to dads house most of the weekend to wait for the results.
If you want to learn more about it all, check out: http://www.leukemia-lymphoma.org/all_page?item_id=7030
For me, right now, I am on a roller coaster ride. One second I am fine, next I am crying my eyes out. I think the hardest thing for me to swallow is that my life could change. Plans and things I was looking forward to are quickly getting pushed aside (aka. Spain). It's the not knowing that is killing me.
There are three possible things that may happen: 1) nothing, he was wrong and I am fine; 2) Hodgkins, the better cancer, which would allow me to live my life as "normal" with just radiation a few times a week and if it is still stage 1 cancer, would be finished with all treatment by June; 3) Non-hogkins and we won't talk about that one, because it's not an option.
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