Remember that part about the initial lymph node pathology being 85% accurate with a 15% chance of it changing on final pathology? Judy got the news yesterday afternoon from her surgeon that there are miniscule cancer cells in the sentinel lymph node. This means that she will have to return to the hospital for surgery to have the rest of the lymph nodes removed. She will also require chemo and possibly radiation. The Surgeon feels that since the number of cancer cells are miniscule, the chances are very good that they have not gone beyond the first lymph node, but they can't take that chance. Judy was hit pretty hard by this latest development, says that she doesn't want to hear that the chances are good because they have been wrong every time so far. She wants to wait for the FINAL pathology this time before getting her hopes up.
Her 2nd surgery will be on Friday January 2nd at 2:00 PM.
Tuesday, December 30, 2008
Saturday, December 27, 2008
Hello!
I am typing to you with my left hand. I decided to write while I have a little bit of energy.
I came home on Christmas. They tried to send me home on Christmas Eve but I said no way. I was in too much pain. I was still getting Morphine from an IV and pushing the button to get more Morphine almost every ten minutes. I was very glad I stayed one more day.
Nothing has really sunk in yet. People keep telling me how wonderful it is about my lymph nodes and I believe them but like I said, It hasn't sunk in yet. My awake time which is only a few hours a day is focused on not throwing up and getting the pain under control so I haven't been able to process the good news. I figured that it took me over a month to cry in the first place about having cancer that it might take me a while to deal with this. Plus I am so out of it from the Vicodin. We think the nausea is either from the pain and/or the vicodin and having it on an empty stomach. I am eating but not a whole lot yet. When I do eat I crave saltine crackers or chocolate shakes.
I am kind of thankful that I only have a limited view of my reconstructed breast. When I look down I see a lump for a breast which is more than I expected so that pleases me. I can not see my scars when I look down which I am ok with. All the doctors and nurses say that it looks great so I will trust them on that. I am not ready to look at the scar yet.
I am recovering quickly. As of yesterday I have been able to get out of bed by myself. For some reason the pain is more tolerable when I have a pillow under my arm. I still need help with that.
Thanks again for all of your love and support. It has been amazing and so helpful!
Judy
I came home on Christmas. They tried to send me home on Christmas Eve but I said no way. I was in too much pain. I was still getting Morphine from an IV and pushing the button to get more Morphine almost every ten minutes. I was very glad I stayed one more day.
Nothing has really sunk in yet. People keep telling me how wonderful it is about my lymph nodes and I believe them but like I said, It hasn't sunk in yet. My awake time which is only a few hours a day is focused on not throwing up and getting the pain under control so I haven't been able to process the good news. I figured that it took me over a month to cry in the first place about having cancer that it might take me a while to deal with this. Plus I am so out of it from the Vicodin. We think the nausea is either from the pain and/or the vicodin and having it on an empty stomach. I am eating but not a whole lot yet. When I do eat I crave saltine crackers or chocolate shakes.
I am kind of thankful that I only have a limited view of my reconstructed breast. When I look down I see a lump for a breast which is more than I expected so that pleases me. I can not see my scars when I look down which I am ok with. All the doctors and nurses say that it looks great so I will trust them on that. I am not ready to look at the scar yet.
I am recovering quickly. As of yesterday I have been able to get out of bed by myself. For some reason the pain is more tolerable when I have a pillow under my arm. I still need help with that.
Thanks again for all of your love and support. It has been amazing and so helpful!
Judy
Tuesday, December 23, 2008
Surgery Update
2:08 PM
Judy is out of surgery and in her room. She did great through both surgeries! Both surgeons said that she will most likely be going home tomorrow. She said that she was crying when she went into the operating room at the thought of losing her breast. Her surgeon comforted her and held her hand until she was asleep under anesthesia. She is already asking how soon she can see what she looks like. She is still very groggy but refuses to go to sleep. She is uncomfortable but in good spirits or at least pretending to be. They expect to have the final pathology report by Monday which will determine what treatment will follow. Keep sending love and prayers.
Judy is out of surgery and in her room. She did great through both surgeries! Both surgeons said that she will most likely be going home tomorrow. She said that she was crying when she went into the operating room at the thought of losing her breast. Her surgeon comforted her and held her hand until she was asleep under anesthesia. She is already asking how soon she can see what she looks like. She is still very groggy but refuses to go to sleep. She is uncomfortable but in good spirits or at least pretending to be. They expect to have the final pathology report by Monday which will determine what treatment will follow. Keep sending love and prayers.
Surgery Progress
11:06 AM
The first part of the surgery is over. The sentinel lymph node had no cancer cells on preliminary pathology. This is great news! The plastic surgeon is doing his part now and expects to be in surgery for 1 1/2 - 2 hours. Mention was made that they may let her go home tomorrow. More updates to come.
P.S. Judy wanted to make sure we noted that that she hates the surgery socks and wants to know why she couldn't wear her underwear her own socks to surgery!!! Why does she have to be naked from the waist down when they are working from the waist up?! Another one of life's mysteries!!
The first part of the surgery is over. The sentinel lymph node had no cancer cells on preliminary pathology. This is great news! The plastic surgeon is doing his part now and expects to be in surgery for 1 1/2 - 2 hours. Mention was made that they may let her go home tomorrow. More updates to come.
P.S. Judy wanted to make sure we noted that that she hates the surgery socks and wants to know why she couldn't wear her underwear her own socks to surgery!!! Why does she have to be naked from the waist down when they are working from the waist up?! Another one of life's mysteries!!
Monday, December 22, 2008
Getting closer
My hospital bag is packed...mostly with books and magazines and crosswords that I don't think I will touch but packed anyway. I also packed my ipod, pictures of Daphne, some candy (because let's face it - I am still me), a journal, very few clothes, pez dispensers that Andy and Becky gave me (they are all of Disney princesses. I packed two of them: Mulan because she is a strong warrior and Jasmine because she is hot) and a few dvds.
My call time has now been changed to 6am! Then at 7am they will take me to the nuclear medicine department and inject into my breast a nuclear substance and then observe where it goes so they can track which is the first or sentinel lymph node where the lymph system travels from the breast. The cool part is that they will then take something like a Geiger counter and hold it against my arm pit that will signal the flow of the lymph system from the breast and help them identify the sentinel node (the first node to which the lymph travels). My mom said that this is an uncomfortable procedure but to that I had to laugh because I can't imagine it hurting more than taking off my breast.
From there I go back to day surgery which should be around 8am and wait until 9am. I am sure that I won't just sit there and wait. I am sure they will be taking my blood pressure, start an IV, meet the anesthesiologist and things like that. I am hoping that my mom can go with me wherever I go until it's time for surgery. I also hope that since she works there and knows most of the doctors and nurses working on me that she can pull some strings. Apparently she requested that certain nurses and anesthesiologist work on me. So, that's good.
Thank you to everyone who is sending me love via thoughts, texts, phone calls or e-mails. I truly appreciate and welcome them all.
Going to go eat dinner with my family now and then go chill out and get some me time. I am pretty ready to call it a night even though I didn't wake up till 9am and then took a two and a half hour nap and it's only 8:30pm!
There is a waiting room with a computer so my mom said that she and my sister will update the blog from the hospital. FYI.
Love you.
Judy
My call time has now been changed to 6am! Then at 7am they will take me to the nuclear medicine department and inject into my breast a nuclear substance and then observe where it goes so they can track which is the first or sentinel lymph node where the lymph system travels from the breast. The cool part is that they will then take something like a Geiger counter and hold it against my arm pit that will signal the flow of the lymph system from the breast and help them identify the sentinel node (the first node to which the lymph travels). My mom said that this is an uncomfortable procedure but to that I had to laugh because I can't imagine it hurting more than taking off my breast.
From there I go back to day surgery which should be around 8am and wait until 9am. I am sure that I won't just sit there and wait. I am sure they will be taking my blood pressure, start an IV, meet the anesthesiologist and things like that. I am hoping that my mom can go with me wherever I go until it's time for surgery. I also hope that since she works there and knows most of the doctors and nurses working on me that she can pull some strings. Apparently she requested that certain nurses and anesthesiologist work on me. So, that's good.
Thank you to everyone who is sending me love via thoughts, texts, phone calls or e-mails. I truly appreciate and welcome them all.
Going to go eat dinner with my family now and then go chill out and get some me time. I am pretty ready to call it a night even though I didn't wake up till 9am and then took a two and a half hour nap and it's only 8:30pm!
There is a waiting room with a computer so my mom said that she and my sister will update the blog from the hospital. FYI.
Love you.
Judy
Counting down the hours
Hi. I have been counting down the hours till surgery since I woke up this morning. 20.5 hours from right now. I will be waking up Tuesday morning around 4am to take a bath in hibicleans before I head to the hospital. I will leave my parents house around 4:45am to get to the hospital and check in at 5:30am! Today I have been packing my hospital bag and doing laundry, etc. to get ready.
Not much else to write right now but I just wanted to share.
Not much else to write right now but I just wanted to share.
Friday, December 19, 2008
Physical and pre-op testing
I went to the hospital yesterday to get a physical to get a medical clearance in order to have surgery. They took some blood and a urine sample and a chest x-ray. Everything came back good! Apparently I am a little dehydrated. That is because I now have a cold. I have been trying to do nothing but rest because my doctor said that they would not put me under if I have cough because it is not good for my lungs. I have never panicked this much over a cold before. Neither has my family.
I have started counting down the days till the surgery. What seemed so far away a few weeks ago now seems way too soon. I guess you could say that I am getting anxious.
I have started counting down the days till the surgery. What seemed so far away a few weeks ago now seems way too soon. I guess you could say that I am getting anxious.
Saturday, December 13, 2008
Final Meeting with Plastic Surgeon
Hi. Yesterday I met with my plastic surgeon (Dr. B.)for the final time until the big day. It was interesting to meet with him again (after not having a good experience with him the first time). I definitely felt better with him this second time around. Although his personality was a little bit harsh, I realized that a good amount of me not liking him the first time was because of where I was at emotionally in this process.
I came to the meeting more aggressive than the first and more prepared for his chuckles toward my questions. I think I also realized that the majority of the women he works with do not have breast cancer. I am going to him to feel whole again and he does not understand that. He looks at the world and sees how he can make it more attractive where I look at the the world and see how I can make fun of it. So, really he is doing his job. I just wish he was a little bit compassionate about it.
He gave me kind of vague answers to my questions. Mostly saying that it all depends on me and my pain level and what I feel up to. Some bullet points below:
*He said that some women come spend only one or two nights in the hospital. He said depending on my pain level that there is a chance that I could be home for Christmas.
*He said I will probably not feel like doing much at all for five to seven days.
*He said no driving for ten days to two weeks.
*He showed me some arm and shoulder exercises to do so that my arm and shoulder does not get stiff and said I should be able to raise my arm all the way above my head in four weeks.
*I will see him every week or two and he will add about 60ccs of saline each visit.
*They will send me home in a binder and that I should wear a light sports bra for a while after the surgery.
He wrote out a prescription for me for vicodin and synthetic penicillin that he suggested that I have ready for when I come home from the hospital and they went over what pain meds. I can and can not have from now until the surgery. They told me not to eat eight hours before surgery and that the night before and the morning of the surgery I will need to shower with hibiclens.
He also reviewed the stages:
1st stage: Putting in the expanders and visiting his office every one to two weeks to slowly fill the implant with saline.
2nd stage: The temporary implant is removed and the real implant put in.
3rd stage: Tattooing the areola and constructing the nipple.
So, my next step is to complete a physical and get a medical clearance from the physician saying that I can have the surgery. There are also some pre-op test I need to have done. My physical is this upcoming Thursday and I am hoping to get my pre-op tests done that same day.
Thanks for reading! Take care.
I came to the meeting more aggressive than the first and more prepared for his chuckles toward my questions. I think I also realized that the majority of the women he works with do not have breast cancer. I am going to him to feel whole again and he does not understand that. He looks at the world and sees how he can make it more attractive where I look at the the world and see how I can make fun of it. So, really he is doing his job. I just wish he was a little bit compassionate about it.
He gave me kind of vague answers to my questions. Mostly saying that it all depends on me and my pain level and what I feel up to. Some bullet points below:
*He said that some women come spend only one or two nights in the hospital. He said depending on my pain level that there is a chance that I could be home for Christmas.
*He said I will probably not feel like doing much at all for five to seven days.
*He said no driving for ten days to two weeks.
*He showed me some arm and shoulder exercises to do so that my arm and shoulder does not get stiff and said I should be able to raise my arm all the way above my head in four weeks.
*I will see him every week or two and he will add about 60ccs of saline each visit.
*They will send me home in a binder and that I should wear a light sports bra for a while after the surgery.
He wrote out a prescription for me for vicodin and synthetic penicillin that he suggested that I have ready for when I come home from the hospital and they went over what pain meds. I can and can not have from now until the surgery. They told me not to eat eight hours before surgery and that the night before and the morning of the surgery I will need to shower with hibiclens.
He also reviewed the stages:
1st stage: Putting in the expanders and visiting his office every one to two weeks to slowly fill the implant with saline.
2nd stage: The temporary implant is removed and the real implant put in.
3rd stage: Tattooing the areola and constructing the nipple.
So, my next step is to complete a physical and get a medical clearance from the physician saying that I can have the surgery. There are also some pre-op test I need to have done. My physical is this upcoming Thursday and I am hoping to get my pre-op tests done that same day.
Thanks for reading! Take care.
Friday, December 5, 2008
Miscellaneous notes from Mom Fabjance
I am so proud of the way Judy has investigated all of her options, weighed her choices, recognized her needs, and made her decisions. This is a strange & frightening new territory she is exploring which use a foreign language all it's own. The process she has used and is using to maneuver her way through it has been impressive.
She came full circle on the reconstruction issue and decided on the implants rather than on using her own tissue. The reasons that led her to this choice were: 1) The reconstruction process will be started immediately although it will be many months before the finished product is seen. 2) The incision to her abdomen if she were to use her own tissue would prevent her from lifting Daphne and holding Daphne on her lap during the healing process. 3) Using her own tissue would leave her with a very large abdominal scar. I think her friend Elizabeth's insights helped her when she commented that it sounded like she would be damaging one part of her body to make another part of her body better.
She decided to stay with the first plastic surgeon, even though personality wise he was definitely not her favorite. Choosing the second plastic surgeon who was on staff at another hospital would have required finding another general surgeon at this same hospital, which would have slowed down the whole process. Also she has been assured by many people (people ranging from the Oncologist to previous patients of his) that the first plastic surgeon has excellent surgical skills with good outcomes. He also is in her insurance network where the second plastic surgeon was not, so financially he is a better option (which wouldn't matter if he were not a good surgeon).
We were initially very concerned about the late date of the surgery, given the fact that she had been told by the general surgeon and by the oncologist that she needed to have her surgery by this week. After talking with the Breast Health Specialist and the General Surgeon at Good Shepherd, we were assured that there is no danger in waiting until 12/23. They always give patients a target deadline because if they didn't, people would delay indefinitely making decisions and arranging surgery. Since Judy's tumor is hormone receptor positive, this means that is a less aggressive tumor and therefore more slow to grow and spread.
The genetic testing has been put on hold for now since the company that performs the test (and there is only one company), requires an advance payment of $1600.00 before they run the test. This $1600.00 is equal to Judy's deductible of $1300 + $300 which is the portion of the test (after the deductible) which her insurance does not pay. She decided to wait until her 2009 deductible has been met, which should happen some time in Jan or Feb after radiation therapy/chemo are started. She needs to have the genetic testing done, but the results will not impact anything immediately, so she can wait.
She came full circle on the reconstruction issue and decided on the implants rather than on using her own tissue. The reasons that led her to this choice were: 1) The reconstruction process will be started immediately although it will be many months before the finished product is seen. 2) The incision to her abdomen if she were to use her own tissue would prevent her from lifting Daphne and holding Daphne on her lap during the healing process. 3) Using her own tissue would leave her with a very large abdominal scar. I think her friend Elizabeth's insights helped her when she commented that it sounded like she would be damaging one part of her body to make another part of her body better.
She decided to stay with the first plastic surgeon, even though personality wise he was definitely not her favorite. Choosing the second plastic surgeon who was on staff at another hospital would have required finding another general surgeon at this same hospital, which would have slowed down the whole process. Also she has been assured by many people (people ranging from the Oncologist to previous patients of his) that the first plastic surgeon has excellent surgical skills with good outcomes. He also is in her insurance network where the second plastic surgeon was not, so financially he is a better option (which wouldn't matter if he were not a good surgeon).
We were initially very concerned about the late date of the surgery, given the fact that she had been told by the general surgeon and by the oncologist that she needed to have her surgery by this week. After talking with the Breast Health Specialist and the General Surgeon at Good Shepherd, we were assured that there is no danger in waiting until 12/23. They always give patients a target deadline because if they didn't, people would delay indefinitely making decisions and arranging surgery. Since Judy's tumor is hormone receptor positive, this means that is a less aggressive tumor and therefore more slow to grow and spread.
The genetic testing has been put on hold for now since the company that performs the test (and there is only one company), requires an advance payment of $1600.00 before they run the test. This $1600.00 is equal to Judy's deductible of $1300 + $300 which is the portion of the test (after the deductible) which her insurance does not pay. She decided to wait until her 2009 deductible has been met, which should happen some time in Jan or Feb after radiation therapy/chemo are started. She needs to have the genetic testing done, but the results will not impact anything immediately, so she can wait.
Thursday, December 4, 2008
SURGERY DATE IS SET!
The date has been set! I am scheduled to have my surgery on Tuesday, December 23rd at 9am. Merry Christmas everybody!
I received a call from my plastic surgeons office today saying that I need to meet with the plastic surgeon one week before the surgery and that I need to get a physical and get a note from the physician saying that I can physically have this procedure. There will also most likely be pre-op blood tests and other tests that need to happen before my surgery.
I received a call from my plastic surgeons office today saying that I need to meet with the plastic surgeon one week before the surgery and that I need to get a physical and get a note from the physician saying that I can physically have this procedure. There will also most likely be pre-op blood tests and other tests that need to happen before my surgery.
Tuesday, December 2, 2008
Radiation Oncologist Appointment
On Monday December 1st Judy met with Dr. Ruffer, a radiation oncologist at Good Shepherd Hospital. At this time we are not sure if radiation will be needed – that will be determined after the Mastectomy, once they look at the tissue. We wanted to get his opinion as to whether or not having implants before getting radiation (if needed) would hinder the effects of the radiation in any way. Also, if he saw more recurrences of breast cancer in patients who got breast reconstruction before they did radiation.
Dr Ruffer explained that the need for radiation would be determined after surgery. The staging process included getting the cancer out, seeing the lymph nodes and then deciding on treatment options – local & regional (surgery/radiation) and systemic (chemotherapy). This would depend on the size of the tumor, if there are positive margins after the breast is removed, and if it has spread to the lymph nodes. She has a greater chance of needing radiation because the cancer is multi-centric (that even though they are removing the breast there is still a chance that there can be cancer cells on the chest wall).
She would do chemo first and then radiation. Radiation would be for 15 – 20 minutes per day, 5 days per week for 5 – 6 weeks. Dr. Ruffer suggested that Judy do radiation with his partner at Illinois Masonic in Chicago, Dr. Yajnik so that she does not have to make the trip from the city for that many days in a row. Radiation will make her tired and may take weeks if not months to get better however it is usually not debilitating and she should be able to continue working while getting radiation.
It was Dr. Ruffer’s opinion that the implants would have no effect on their ability to get to the cancer with radiation and that it would be better for her to get immediate reconstruction if she was getting implants. Radiation can cause thinning of the skin and scar tissue which can make it more difficult to do reconstruction after radiation. If Judy decided to go with a TRAM, it would be best to do a delayed reconstruction due to the effects of the radiation on the skin.
Now the decision is up to Judy . . . which procedure does she want to get? Which plastic surgeon? Immediate or delayed reconstruction? And the decision had to be made today because the surgery has to happen this week. As Judy told the doctor, “I can’t usually decide what I want for lunch and now I have to decide what kind of breast I want?” Overwhelming doesn’t begin to describe it.
As of Monday night, Judy has decided to go with implants and immediate reconstruction. At this point we are just waiting to hear back from the surgeon as to when surgery will be scheduled.
Dr Ruffer explained that the need for radiation would be determined after surgery. The staging process included getting the cancer out, seeing the lymph nodes and then deciding on treatment options – local & regional (surgery/radiation) and systemic (chemotherapy). This would depend on the size of the tumor, if there are positive margins after the breast is removed, and if it has spread to the lymph nodes. She has a greater chance of needing radiation because the cancer is multi-centric (that even though they are removing the breast there is still a chance that there can be cancer cells on the chest wall).
She would do chemo first and then radiation. Radiation would be for 15 – 20 minutes per day, 5 days per week for 5 – 6 weeks. Dr. Ruffer suggested that Judy do radiation with his partner at Illinois Masonic in Chicago, Dr. Yajnik so that she does not have to make the trip from the city for that many days in a row. Radiation will make her tired and may take weeks if not months to get better however it is usually not debilitating and she should be able to continue working while getting radiation.
It was Dr. Ruffer’s opinion that the implants would have no effect on their ability to get to the cancer with radiation and that it would be better for her to get immediate reconstruction if she was getting implants. Radiation can cause thinning of the skin and scar tissue which can make it more difficult to do reconstruction after radiation. If Judy decided to go with a TRAM, it would be best to do a delayed reconstruction due to the effects of the radiation on the skin.
Now the decision is up to Judy . . . which procedure does she want to get? Which plastic surgeon? Immediate or delayed reconstruction? And the decision had to be made today because the surgery has to happen this week. As Judy told the doctor, “I can’t usually decide what I want for lunch and now I have to decide what kind of breast I want?” Overwhelming doesn’t begin to describe it.
As of Monday night, Judy has decided to go with implants and immediate reconstruction. At this point we are just waiting to hear back from the surgeon as to when surgery will be scheduled.
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