Finally I am awake enough to feel like writing about what has been going on the last two days. Honestly it feels like it has been a week and I can’t believe it is only Tuesday night.
I’m thinking just a timeline/list type update will be the best.
Monday
8:30: appointment with Dr. Breckler (my new family doctor) she was great…she asked me if they had told me anything and I said no…she said that they think it is some kind of lymphoma, that there are many types of lymphoma, and that it is very treatable. She said that she will be here for me through everything and that if I needed anything explained to just call her.
11:15: arrived at Dr. Mandal’s office (the oncologist in this story) he was running behind so we waited a long time to see him, (I started coughing up blood again as we were waiting, it seems when I do too much, get hot, or have to talk too much is when the coughing starts and it is hard to stop sometimes) during our appointment he went and looked at my CT scan…he said that I have enlarged lymph nodes in my neck chest and upper stomach (Wednesday I have a CT scan of the abdomen and pelvis to see how far these masses have spread). He said we need to get a true diagnosis of what is going on and again mentioned it is possibly a form of lymphoma…when I asked him what else it could be he rattled off a bunch of things I have never heard of, and he said that the treatment is based on the diagnosis and that there are very different treatments for Hodgkin's verses non-Hodgkin's lymphoma, or cancer verses the other more rare things it could be. He sent me to Radiation
Time doesn’t matter at this point: We go to radiation and see a Dr. Reed…she explains the process, that I will have a radiation treatment everyday (except weekends) for 14 days. They are starting radiation without a diagnosis because the masses on my chest are pushing on my airway resulting in all the trouble I’m having breathing. They said that in contrast to my CT scan from a little over a month ago these masses are growing and spreading rapidly.
I have learned the hard way that radiation is a very precise process…my first treatment took over a half and hour, which doesn’t sound too long until I tell you how I had to be positioned. They have to make sure they are treating the entire mass they said because it is growing so fast they need to make sure they get it all.
Here are some pictures I found on a google image search…
This is pretty much what the radiation machine looks like (the one at the hospital is black)
This is basically the position I had to lay except my arms were more stretched above my head and I had to hold onto this handlebar thing. Because of the masses in my neck and chest when I lay like that it feels a little like I am choking and when I get up I am very lightheaded…you also have to lay there with your gown down around your middle…I left traumatized at having to lay there topless for so long…it was the hardest part of the day and I was not O.K. after..,
4:30: Home after a LONG LONG day
Tuesday
9:30: Finally was a good girl and went to the DMV and registered my car in Indiana…I don’t know why but I kept putting it off, now I can stop being scared of getting pulled over.
10:00: Appointment with the surgeon Dr. Vennekotter…he had some medical emergencies with other patients and was running VERY behind so we did not get in to see him until 11:45…The morning was spent talking to some people on the phone and just relaxing in the waiting room. I have decided instead of getting frustrated about having (because I know there will be a lot of waiting) to wait I am going to take every opportunity I have to close my eyes, breathe, pray, and relax…
Dr. Venekotter felt my neck and said that the lymph node would not have been able to be removed by Dr. Moss today because it is too big and ‘fixed’. He took about 5 core biopsy samples…using an ultrasound machine he first numbed the area, then he took the ultrasound and found the right place to take the sample…after that he made a 5/8ths cut in my neck and put the needle in…it is like a gun thing and POPs and grabs tissue…he did this about 5 or 6 times so I am expecting the area to be really sore tomorrow…It hurt a little while he was doing it really just a lot of pressure.
We will know the results of these tests on Thursday...4:00 on Thursday should be ‘THE’ appointment with Dr. Mandal to find out what this is…
12:45: I had a CT scan specifically to map out the radiation spot again…so it was another 1/2hr 45 min. of holding my hands above my head, without my shirt on, having to readjust microscopic amounts to get the scan EXACTLY where it needed to be. I hated every second of it!
1:45 ish: Had my second radiation treatment…found out after my treatment that the images from the CT scan I JUST had were not coming up and that I would have to go back and do it again…
2:15: Back in radiology for a 2nd try at the CT scan…this time it only took one try and 10 min…I was SO relieved because I’m not sure I could handle another 45 min…
3:00: Home where we made some tacos, and watched some shows on DVR relaxing
The agenda for the rest of the week is…
Wednesday
CT scan of my abdomen and pelvis…and my third radiation treatment…also I will be meeting with someone from the claim aid office…
Thursday
Fourth radiation treatment and appointment with the oncologist.
Friday
Fifth radiation treatment.
O.K. was that enough information for you? I know I’m at capacity…I’m staying awake until 1:15 because I have to drink a HUGE container of something in preparation for the CT scan tomorrow…then I am going back to bed fred!
I’m thinking just a timeline/list type update will be the best.
Monday
8:30: appointment with Dr. Breckler (my new family doctor) she was great…she asked me if they had told me anything and I said no…she said that they think it is some kind of lymphoma, that there are many types of lymphoma, and that it is very treatable. She said that she will be here for me through everything and that if I needed anything explained to just call her.
11:15: arrived at Dr. Mandal’s office (the oncologist in this story) he was running behind so we waited a long time to see him, (I started coughing up blood again as we were waiting, it seems when I do too much, get hot, or have to talk too much is when the coughing starts and it is hard to stop sometimes) during our appointment he went and looked at my CT scan…he said that I have enlarged lymph nodes in my neck chest and upper stomach (Wednesday I have a CT scan of the abdomen and pelvis to see how far these masses have spread). He said we need to get a true diagnosis of what is going on and again mentioned it is possibly a form of lymphoma…when I asked him what else it could be he rattled off a bunch of things I have never heard of, and he said that the treatment is based on the diagnosis and that there are very different treatments for Hodgkin's verses non-Hodgkin's lymphoma, or cancer verses the other more rare things it could be. He sent me to Radiation
Time doesn’t matter at this point: We go to radiation and see a Dr. Reed…she explains the process, that I will have a radiation treatment everyday (except weekends) for 14 days. They are starting radiation without a diagnosis because the masses on my chest are pushing on my airway resulting in all the trouble I’m having breathing. They said that in contrast to my CT scan from a little over a month ago these masses are growing and spreading rapidly.
I have learned the hard way that radiation is a very precise process…my first treatment took over a half and hour, which doesn’t sound too long until I tell you how I had to be positioned. They have to make sure they are treating the entire mass they said because it is growing so fast they need to make sure they get it all.
Here are some pictures I found on a google image search…
This is pretty much what the radiation machine looks like (the one at the hospital is black)
This is basically the position I had to lay except my arms were more stretched above my head and I had to hold onto this handlebar thing. Because of the masses in my neck and chest when I lay like that it feels a little like I am choking and when I get up I am very lightheaded…you also have to lay there with your gown down around your middle…I left traumatized at having to lay there topless for so long…it was the hardest part of the day and I was not O.K. after..,
4:30: Home after a LONG LONG day
Tuesday
9:30: Finally was a good girl and went to the DMV and registered my car in Indiana…I don’t know why but I kept putting it off, now I can stop being scared of getting pulled over.
10:00: Appointment with the surgeon Dr. Vennekotter…he had some medical emergencies with other patients and was running VERY behind so we did not get in to see him until 11:45…The morning was spent talking to some people on the phone and just relaxing in the waiting room. I have decided instead of getting frustrated about having (because I know there will be a lot of waiting) to wait I am going to take every opportunity I have to close my eyes, breathe, pray, and relax…
Dr. Venekotter felt my neck and said that the lymph node would not have been able to be removed by Dr. Moss today because it is too big and ‘fixed’. He took about 5 core biopsy samples…using an ultrasound machine he first numbed the area, then he took the ultrasound and found the right place to take the sample…after that he made a 5/8ths cut in my neck and put the needle in…it is like a gun thing and POPs and grabs tissue…he did this about 5 or 6 times so I am expecting the area to be really sore tomorrow…It hurt a little while he was doing it really just a lot of pressure.
We will know the results of these tests on Thursday...4:00 on Thursday should be ‘THE’ appointment with Dr. Mandal to find out what this is…
12:45: I had a CT scan specifically to map out the radiation spot again…so it was another 1/2hr 45 min. of holding my hands above my head, without my shirt on, having to readjust microscopic amounts to get the scan EXACTLY where it needed to be. I hated every second of it!
1:45 ish: Had my second radiation treatment…found out after my treatment that the images from the CT scan I JUST had were not coming up and that I would have to go back and do it again…
2:15: Back in radiology for a 2nd try at the CT scan…this time it only took one try and 10 min…I was SO relieved because I’m not sure I could handle another 45 min…
3:00: Home where we made some tacos, and watched some shows on DVR relaxing
The agenda for the rest of the week is…
Wednesday
CT scan of my abdomen and pelvis…and my third radiation treatment…also I will be meeting with someone from the claim aid office…
Thursday
Fourth radiation treatment and appointment with the oncologist.
Friday
Fifth radiation treatment.
O.K. was that enough information for you? I know I’m at capacity…I’m staying awake until 1:15 because I have to drink a HUGE container of something in preparation for the CT scan tomorrow…then I am going back to bed fred!
Zapolski Family said...Still praying for you! I hope you get some more answers soon! Keep the good attitude during all of the annoying waiting time!
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