This week Monday, I met with an oncologist, Dr. Delmastro for the first time. He was very kind and patient with us as we had A LOT of questions. I am thankful that Jon's sister was able to come to this appointment and help ask some good questions as well as take notes. She has been an invaluable resource to us. We talked with the doctor for about 3 hours, and it was definitely information overload. We came away from the appointment feeling good about using him as my oncologist, as well as with a basic idea of a treatment plan. It was determined that I was probably a stage 3a, but that I would need a PET/CT scan the next day to add more clarity and complete staging. The plan included chemo first (a drug called AC (Adriamycin & Cytoxan) for 8 weeks, followed by Taxol for another 8 weeks). I will be given these drugs, once every two weeks, which is called a dose dense chemo - which is the most aggressive option. After chemo I will have surgery, which will then be followed by radiation. It was decided that I should start as soon as possible, either later this week or the beginning of next, depending on the PET scan results.
Tuesday morning I had the PET/CT scan, followed by an echocardiogram to get a baseline reading of my heart (a potential side effect of chemo can be damage to heart, so they monitor that closely). Dr. Delmastro called me himself Tuesday afternoon about 4:00. He had the results of the PET scan. The good news is that the cancer had not spread to another region of my body (which would have meant stage 4), the bad news was that it had spread to another lymph node system, called the internal mammary chain. This set of lymph nodes is deeper within the chest, underneath the ribs/sternum, so harder to reach. This effectively stages my cancer at stage 3c. Dr. Delmastro encouraged me to get a second opinion at this point, because this news may change our treatment plan...whether that would involve a more complex surgery, or a different type of radiation. I told him that we had had an appointment set up at Mayo-Rochester for a second opinion, which we had decided to cancel because we felt so comfortable with his original plan and using him as my oncologist. I wasn't sure if Jon had already made the call to cancel that appointment at this point, so he told me to check with Jon and if it had been cancelled to call and get the appointment back if at all possible. I'll be honest, this phone call shook me up quite a bit. I think mentally I was ready to move forward with a treatment plan, and then to hear this news was a pretty big setback. I called Jon, and we still had the appointment for Rochester, so I was relieved at that.
Wednesday I went into the lab to get a blood draw at noon. At about 12:30, Dr. Delmastro's office called and said they were able to get me in to see an oncologist at Mayo-Eau Claire (Dr. Basu) at 4:00. So we did some quick phone calls and our family stepped in to care for the kids and we were able to make this appointment. Dr. Basu's opinion was that we could proceed with the original treatment plan, but it would include a more targeted radiation to this internal mammary chain. He said surgery of this area is not an option, because it is too difficult to reach, and the risk would outweigh the benefit. He did say we should keep our Rochester appointment, if we wanted to consult with a few more specialists. He also encouraged starting chemo as soon as possible.
Thursday morning (today) Dr. Delmastro's office called to see when I would like to start my first chemo appointment. We decided on Monday, so that I will hopefully have my worst days right after chemo during the middle of the week while the girls are gone at school. Dr. Basu also called me back and said he had consulted with another oncologist at Mayo-Rochester and he agreed with the plan of treatment. It is reassuring to have several doctors agreeing on the same plan :) We still have our appointment schedule for Rochester for next Thursday. We have a few more appointments in the next few days that will determine whether we feel this appointment is necessary or not.
Tomorrow (Friday) I have an MRI scheduled for 7:45 (this should give a better image of the internal mammary chain lymph nodes that are deeper in the chest) followed by an appointment with the radiation doctor at Marshfield clinic.
After that, I plan to have a fun and normal weekend with the kids :) I feel like Monday will be the start of my new "normal" and do feel afraid that I will never feel the same again.
I have been reminded throughout this week to look for things to be thankful for, and there are so many:
-the timing of my appointments (being able to get in so quickly!) has definitely been miraculous
-I have an amazing support network of friends and family in this area. I am getting lots of texts and email messages which is so encouraging and we feel so loved.
-We have had family and friends calling anyone they know in the medical field, looking for ways to help us.
-My family is amazing, period.
-All of the doctors/nurses/staff that I have seen so far have all been so kind and encouraging. They seem to really want to know me as a person - not just as a cancer patient.
-People have already been showering me with meals, I have not had to cook all week! Even though I am still feeling fine for now, this is a huge blessing because with all of the extra appointments and spending half of the day on the phone, I would not have had time to cook.
-There are so many other small moments where God is showing up. He is ever present.
The verse that I has been coming to mind a lot this week is Psalm 36:18
This God-- his way is perfect; the word of the Lord proves true; he is a shield for all those who take refuge in him.
Wow, if you have read this far, you deserve an award. Sorry for the long boring posts, I am mostly just trying to record this so I remember what these first few weeks were like. Starting next week, there will be a lot less information to absorb, I hope :)
Thursday, December 10, 2015
Saturday, December 05, 2015
Diagnosis
It's hard to believe that the journey we are on, has not even been 3 weeks. It is a bit of a blur. Here is the long version of the story:
In the middle of September, I remember feeling an obvious lump in my breast. At the time, I was still nursing Andrew, so I did not think too much of it. I was mostly concerned that I was on my way to having a plugged milk duct, which I have had in the past and is definitely not fun. I did a little bit of googling and wasn't too concerned. Fast forward a month to the middle of October, I remember waking up and feeling an enlarged lymph node in my armpit. At the time, I just thought I was maybe coming down with something. Somewhere around that time, I had made an appointment with a doctor to establish a primary care doctor. I have only seen an OB since we had moved back to Eau Claire in 2005, and since we are done having kids I figured it is time that I find a general doctor. I went in to see Dr. Reesman on Tuesday, November 17 at 12:00. She was very kind but also very concerned about the two lumps. She got me in that afternoon to Sacred Heart hospital for a mammogram and an ultrasound. I heard back from her two days later, on Thursday. She said that the mammogram & ultrasound looked suspicious and that she would like me to see a surgeon to see if he would want to do a biopsy or go ahead and do a lumpectomy. I met with Dr. Daniels out of the Evergreen Surgical group the next day. It was a very quick check up, and he said he wanted to biopsy the breast lump as well as the lymph node. He made me two appointments, the biopsy for the next Wednesday (November 25, the day before Thanksgiving) and then a follow up appointment with him, on Tuesday, December 1. At this point, obviously cancer is in the back of my mind, but the doctor had said breast cancer is rare for my age, and that lymph nodes can be swollen for a number of different reasons. I was trying to stay positive, but the waiting between appointments was very hard!
I had an ultrasound guided core needle biopsy the next week. The radiologist was very nice, but it was a longer and more uncomfortable procedure than I expected. I was pretty tender and sore afterward, but nothing that some tylenol and ice couldn't help. My first clue that this was maybe more serious than I was hoping for, was that after the biopsy he placed a titanium micro clip in each biopsy site. He mentioned that those would come out when I had the lumps removed. I also had an additional mammogram after the biopsy. A few others who have had biopsies before had not had that. After the procedure, there was 6 days of waiting, so thankfully we had a busy and fun-filled weekend with Thanksgiving and family visiting us...it was the perfect distraction.
Monday, November 30, at about 10:30 am, I received an email that my online patient record had been updated. Evergreen Surgical has a handy app that I was able to download on my phone called "follow my health." It helps keep track of appointments, but also posts the doctor's notes, etc. So anyway, I logged-in and saw that the new update was my pathology report. I probably shouldn't have read it then, but I did.
That is how I discovered that I have invasive ductal carcinoma in my left breast and metastatic adenocarcinoma in my axillary lymph node. I was home with the boys at the time, so we did our normal daily routine. We had lunch, went to the library for a bit. The boys played with the train set while I looked for books on breast cancer. During nap time, I spent time doing some googling to try to figure out what the rest of the pathology report meant. The girls came home from school and Jon came home from work. Greta made us french toast for dinner and then we spent an hour decorating our Christmas tree. After the kids were in bed, I told Jon about the diagnosis. We spent the next two hours processing, crying and praying.
In retrospect, I am glad I was able to read the report the day before my appointment. I feel like it helped me to be able to go in to see the doctor with some more educated questions, and to take the shock and emotion out of the appointment. We met with Dr. Daniels at 1:00 on Tuesday. If you are going to find out you have cancer, he is a good doctor to hear it from. He was very empathetic and reassuring to us, but at the same time didn't give false hope. He was honest that the next 6 months are going to be hard. He seemed to be confident that we will be able to get rid of this cancer, but the problem with being 34 years old and having cancer, is to keep it from coming back. The bad news is that the size of the tumor I have is significant (over 5 cm) so I will need to have chemotherapy first and then he recommended a bilateral mastectomy after I have recovered from chemo. He said it was too soon to give the cancer a stage or a prognosis. I had a previously scheduled trip to visit my sister in NY with Greta & Addie, so I asked if it was okay for me to still go on that. He said if I was emotionally able to handle it, that would be fine.
Honestly, even knowing the news ahead of time, we left that appointment in a bit of shock. We went to the Coffee Grounds and had a coffee and processed together a little more. We decided that we wouldn't tell the kids until after New York, so we could go and have a fun time together, without them having any worry. That night, we began to tell some family and friends. People have been awesome and supportive with many emails and texts. We are feeling loved.
So, that is the end of the story of the last 3 weeks. I am still in New York visiting my sister. I will come home tomorrow (Sunday) and then I have my first Oncologist appointment with Dr. Delmastro at Sacred Heart on Monday.
My emotions have been a roller coaster. I know of several people who have beaten breast cancer, and I plan to be one of them. There are a few moments, of "what-ifs", but I am trying to stay positive and focus on what the next 6 months hold for me. I can feel that people have been praying for me to not be anxious, because I am very much at peace about this.
The day of my first mammogram, I decided to memorize Philippians 4:6-7:
Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving, let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.
A few other verses that I find comfort in right now:
Exodus 14:14...
The Lord will fight for you, and you have only to be silent.
Psalm 46:1-2
God is our refuge and strength, a very present help in trouble. Therefore we will not fear though the earth gives way, though the mountains be moved into the heart of the sea.
Psalm 46:10-11
"Be still, and know that I am God. I will be exalted among the nations, I will be exalted in the earth!" The Lord of hosts is with us; the God of Jacob is our fortress.
In the middle of September, I remember feeling an obvious lump in my breast. At the time, I was still nursing Andrew, so I did not think too much of it. I was mostly concerned that I was on my way to having a plugged milk duct, which I have had in the past and is definitely not fun. I did a little bit of googling and wasn't too concerned. Fast forward a month to the middle of October, I remember waking up and feeling an enlarged lymph node in my armpit. At the time, I just thought I was maybe coming down with something. Somewhere around that time, I had made an appointment with a doctor to establish a primary care doctor. I have only seen an OB since we had moved back to Eau Claire in 2005, and since we are done having kids I figured it is time that I find a general doctor. I went in to see Dr. Reesman on Tuesday, November 17 at 12:00. She was very kind but also very concerned about the two lumps. She got me in that afternoon to Sacred Heart hospital for a mammogram and an ultrasound. I heard back from her two days later, on Thursday. She said that the mammogram & ultrasound looked suspicious and that she would like me to see a surgeon to see if he would want to do a biopsy or go ahead and do a lumpectomy. I met with Dr. Daniels out of the Evergreen Surgical group the next day. It was a very quick check up, and he said he wanted to biopsy the breast lump as well as the lymph node. He made me two appointments, the biopsy for the next Wednesday (November 25, the day before Thanksgiving) and then a follow up appointment with him, on Tuesday, December 1. At this point, obviously cancer is in the back of my mind, but the doctor had said breast cancer is rare for my age, and that lymph nodes can be swollen for a number of different reasons. I was trying to stay positive, but the waiting between appointments was very hard!
I had an ultrasound guided core needle biopsy the next week. The radiologist was very nice, but it was a longer and more uncomfortable procedure than I expected. I was pretty tender and sore afterward, but nothing that some tylenol and ice couldn't help. My first clue that this was maybe more serious than I was hoping for, was that after the biopsy he placed a titanium micro clip in each biopsy site. He mentioned that those would come out when I had the lumps removed. I also had an additional mammogram after the biopsy. A few others who have had biopsies before had not had that. After the procedure, there was 6 days of waiting, so thankfully we had a busy and fun-filled weekend with Thanksgiving and family visiting us...it was the perfect distraction.
Monday, November 30, at about 10:30 am, I received an email that my online patient record had been updated. Evergreen Surgical has a handy app that I was able to download on my phone called "follow my health." It helps keep track of appointments, but also posts the doctor's notes, etc. So anyway, I logged-in and saw that the new update was my pathology report. I probably shouldn't have read it then, but I did.
That is how I discovered that I have invasive ductal carcinoma in my left breast and metastatic adenocarcinoma in my axillary lymph node. I was home with the boys at the time, so we did our normal daily routine. We had lunch, went to the library for a bit. The boys played with the train set while I looked for books on breast cancer. During nap time, I spent time doing some googling to try to figure out what the rest of the pathology report meant. The girls came home from school and Jon came home from work. Greta made us french toast for dinner and then we spent an hour decorating our Christmas tree. After the kids were in bed, I told Jon about the diagnosis. We spent the next two hours processing, crying and praying.
In retrospect, I am glad I was able to read the report the day before my appointment. I feel like it helped me to be able to go in to see the doctor with some more educated questions, and to take the shock and emotion out of the appointment. We met with Dr. Daniels at 1:00 on Tuesday. If you are going to find out you have cancer, he is a good doctor to hear it from. He was very empathetic and reassuring to us, but at the same time didn't give false hope. He was honest that the next 6 months are going to be hard. He seemed to be confident that we will be able to get rid of this cancer, but the problem with being 34 years old and having cancer, is to keep it from coming back. The bad news is that the size of the tumor I have is significant (over 5 cm) so I will need to have chemotherapy first and then he recommended a bilateral mastectomy after I have recovered from chemo. He said it was too soon to give the cancer a stage or a prognosis. I had a previously scheduled trip to visit my sister in NY with Greta & Addie, so I asked if it was okay for me to still go on that. He said if I was emotionally able to handle it, that would be fine.
Honestly, even knowing the news ahead of time, we left that appointment in a bit of shock. We went to the Coffee Grounds and had a coffee and processed together a little more. We decided that we wouldn't tell the kids until after New York, so we could go and have a fun time together, without them having any worry. That night, we began to tell some family and friends. People have been awesome and supportive with many emails and texts. We are feeling loved.
So, that is the end of the story of the last 3 weeks. I am still in New York visiting my sister. I will come home tomorrow (Sunday) and then I have my first Oncologist appointment with Dr. Delmastro at Sacred Heart on Monday.
My emotions have been a roller coaster. I know of several people who have beaten breast cancer, and I plan to be one of them. There are a few moments, of "what-ifs", but I am trying to stay positive and focus on what the next 6 months hold for me. I can feel that people have been praying for me to not be anxious, because I am very much at peace about this.
The day of my first mammogram, I decided to memorize Philippians 4:6-7:
Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving, let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.
A few other verses that I find comfort in right now:
Exodus 14:14...
The Lord will fight for you, and you have only to be silent.
Psalm 46:1-2
God is our refuge and strength, a very present help in trouble. Therefore we will not fear though the earth gives way, though the mountains be moved into the heart of the sea.
Psalm 46:10-11
"Be still, and know that I am God. I will be exalted among the nations, I will be exalted in the earth!" The Lord of hosts is with us; the God of Jacob is our fortress.
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