Nothing like cancer to get you thinking about all the things you're thankful for. I'm truly thankful for so many people and things in my life. My family and friends are such exceptional people and I've found out recently how much they really care about me. I guess normally, I go around just knowing they're always there if I need anything, but in my current circumstance, I am so grateful at their outpouring of love and support. Whether right around the corner, towns away or across the country, I know they're praying for me and they're ready to help with whatever comes my way. I am truly blessed!
Happy Thanksgiving!
Thursday, November 27, 2008
Update
I am meeting with a radiation oncologist on December 8th. He will decide whether or not I am eligible for a radiation treatment called a mammocyte. Mostly it is used in women over 50. However, it is not unheard of to use it in someone younger. This type of radiation is a balloon that gets inserted into the cavity of where the lump is removed. It then releases the radiation over a number of days and then radiation is complete. It sounds like a much better alternative than traditional radiation which takes place an hour a day, 5 days a week, over a course of about 6 weeks.
The biopsy was inconclusive, so now I have to wait for the lumpectomy when they pull the sentinel node, to find out if there is cancer in the nodes. If so, then I need chemo. If not, I won't. Let's hope for NOT.
Good news--my cancer is estrogen and progesterone positive. This means that they will know how to treat it. Probably with a 5 year dose of Tamoxifen, which pulls out the estrogen in the body. UGH--instant menopause--can't wait (can you hear the sarcasm). I guess if it gives me the best chance of survival, that's the way to go.
The biopsy was inconclusive, so now I have to wait for the lumpectomy when they pull the sentinel node, to find out if there is cancer in the nodes. If so, then I need chemo. If not, I won't. Let's hope for NOT.
Good news--my cancer is estrogen and progesterone positive. This means that they will know how to treat it. Probably with a 5 year dose of Tamoxifen, which pulls out the estrogen in the body. UGH--instant menopause--can't wait (can you hear the sarcasm). I guess if it gives me the best chance of survival, that's the way to go.
Tuesday, November 25, 2008
Cancer info
Dave and I met with the breast surgeon, Dr. Borden, today. He went over all of the details that he had gotten thus far, in layman's terms. He also did the biopsy of my lymph node--measured it first with ultrasound--it was 1.5 cm. We'll get those results the beginning of next week. Usually it only takes two days, but because of Thanksgiving, it will take longer.
There are a few scenarios:
Scenario 1: If the cancer is just in the breast, they will do a lumpectomy and pull the sentinal node at the same time. The node will be tested for cancer. If negative for cancer, I will begin just radiation.
Scenario 2: If the cancer is in the nodes as well, then they will do the lumpectomy, pull the sentinal node as well as other nodes in the area to see how far the cancer has spread. Then I will have chemo and radiation and will be sent for a PET CT to see if the cancer is anywhere else.
IF I am a candidate, I could get a new type of radiation where they set a balloon in place of where they take out the tumor. It is connected to a catheter and releases the radiation gradually over a period of 12 days and then radiation is done. This sounds preferable to having to go 5 days a week, an hour a day for weeks at a time. HOWEVER, they usually do this procedure on people over age 50. Dr. Borden will be speaking with the radiologist, Dr. Silverstein, to see if I can qualify at age 42. We'll see.
I have to decide between a lumpectomy and mastectomy before my surgery. Neither gives me a better chance of survival, so I figure I'll go for the lumpectomy...I could always have a mastectomy later on if needed.
We're still waiting on the results of the cancer being estrogen or progesterone receptive, or Her2, or something called TRi___. It is an invasive ductal carcinoma, stage 1 if no lymph nodes are involved, stage 2 if lymph nodes are involved, stage 3 if lymph nodes are involved and it has spread elsewhere...don't even want to talk about stage 4. So far I'm happy with stage 1, but I'll know more next week.
I've got lots of literature to read, and some tylenol to take for that lymph node biopsy. This should keep my mind occupied for a while.
Also, my brother-in-law, Gary had some really horrible news. His cancer has not gotten better and the doctors say there is nothing else they can do. I pray that they find something to take his pain away. It's just awful how much pain he's in.
PRAY, PRAY, PRAY! I'll be doing the same.
Saturday, November 22, 2008
What a Week
By Tuesday, November 18th, I still had not gotten any further with the doctors' offices, nore the insurance company. So I called the healthcare advocate that our union had bought into last year. Within an hour they had me on the phone with a breast surgeon's office at Mather Hospital's Fortunato Breast Care Center. In minutes of speaking with them, I had an appointment for Wednesday morning at 10:15. Called the substitute service for another 1/2 day off and called the first two parents on my conference list just in case my appointment ran late.
Dr. Borden took a good amount of time going over all my films, explaining each one as he went along. He then did a clinical exam and couldn't find the lump that way, but he did find a swollen lymph node under my left arm. Then, he used his ultrasound to find the lump in my breast. He marked it on the pictures he took. Then, he said that while I went back to work, he would bring all my films over to the Fortunato Breast Care Center to have the radiologist there look over everything.
An hour after leaving his office, he called. Of course, I missed the call because my phone was in my pocketbook, and with everything I've been through with phone calls and doctors, I did not expect a call that soon. I called back and his service put me right through to him. Dr. Borden told me that I had to call Fortunato for an appointment the next day. They were going to do a stereotactic biopsy.
Fortuato gave me an appointment the following morning at 9am. They explained the sterotactic biopsy, too. While laying face down, They would compress my left breast, and take some mammographic type pictures. Then, once the nodule was found, they would begin to insert the needle--numbing me as the needle goes in.
The nurses-Colleen and Lorraine, and radiologist-Dr. Michelle Price, were all wonderful. They talked me through each step of what they were doing and told me that if I felt anything at all to tell them and they would administer more lidocaine. The last minute of the test I was a bit uncomfortable but it was over soon enough. The worst part was laying there belly down with my face to the side. My neck was in agony after--and I have to wait until Monday before I have therapy again.
Friday at 1:10, I received a phone call from Fortunato letting me know that the pathology came back positive for cancer. I was, surpisingly, fine. I think that I was expecting this anyway. I was told to set up an appointment with Dr. Borden (who was in surgery) which I did for Tuesday, Nov. 25th at 1:45. Dr. Borden called me back at 2:45 to give me some more details. Bad news: the cancer is invasive (Cassie looked this up--it means that it has already spread into the surrounding tissue). Good news: it's only .6cm in size, and it's borders are differentiated (whatever that means)--which suggests to the doctor that it's estrogen positive (easily treatable). I'll know more on Tuesday when he goes over the full pathology report. He will also be doing a biopsy on that swollen lymph node under my arm.
So, overall, I'm feeling okay. I keep waiting to 'lose it'. The only time I get upset is when I tell other people and they get upset. But, crying is good sometimes as well.
Say some prayers please.
Dr. Borden took a good amount of time going over all my films, explaining each one as he went along. He then did a clinical exam and couldn't find the lump that way, but he did find a swollen lymph node under my left arm. Then, he used his ultrasound to find the lump in my breast. He marked it on the pictures he took. Then, he said that while I went back to work, he would bring all my films over to the Fortunato Breast Care Center to have the radiologist there look over everything.
An hour after leaving his office, he called. Of course, I missed the call because my phone was in my pocketbook, and with everything I've been through with phone calls and doctors, I did not expect a call that soon. I called back and his service put me right through to him. Dr. Borden told me that I had to call Fortunato for an appointment the next day. They were going to do a stereotactic biopsy.
Fortuato gave me an appointment the following morning at 9am. They explained the sterotactic biopsy, too. While laying face down, They would compress my left breast, and take some mammographic type pictures. Then, once the nodule was found, they would begin to insert the needle--numbing me as the needle goes in.
The nurses-Colleen and Lorraine, and radiologist-Dr. Michelle Price, were all wonderful. They talked me through each step of what they were doing and told me that if I felt anything at all to tell them and they would administer more lidocaine. The last minute of the test I was a bit uncomfortable but it was over soon enough. The worst part was laying there belly down with my face to the side. My neck was in agony after--and I have to wait until Monday before I have therapy again.
Friday at 1:10, I received a phone call from Fortunato letting me know that the pathology came back positive for cancer. I was, surpisingly, fine. I think that I was expecting this anyway. I was told to set up an appointment with Dr. Borden (who was in surgery) which I did for Tuesday, Nov. 25th at 1:45. Dr. Borden called me back at 2:45 to give me some more details. Bad news: the cancer is invasive (Cassie looked this up--it means that it has already spread into the surrounding tissue). Good news: it's only .6cm in size, and it's borders are differentiated (whatever that means)--which suggests to the doctor that it's estrogen positive (easily treatable). I'll know more on Tuesday when he goes over the full pathology report. He will also be doing a biopsy on that swollen lymph node under my arm.
So, overall, I'm feeling okay. I keep waiting to 'lose it'. The only time I get upset is when I tell other people and they get upset. But, crying is good sometimes as well.
Say some prayers please.
Friday, November 14, 2008
Venting
While waiting for my echocardiogram appointment (for an hour and a half), I decided what better time to make phone calls to Stony Brook. I get switched over to 3 different people only to find that the person I need to book the MRI guided biopsy with, is not available until Tuesday. I then call Colleen who gives me the number of the head RN at the Breast Center. She tells me they'd probably have me come in as a new patient to be evaluated with all the films and reports I currently have. She suggests I go back to Medical Arts Women's Imaging for the procedure. Then, if the biopsy comes back suspicious, I can bring everything with me to Stony Brook and meet with the breast surgeon.
I call Medical Arts. They give me an appointment for this Thursday, Nov. 20th. They just need the script from the doctor and an approval from my insurance company. I call my primary care physician and tell the receptionist what I need. They call me back and leave a message on my cell phone. While that's happening, I am getting my echocardiogram--the tech actually checked two other places that have never been checked before--one was the carotid artery and the other was the place where your ribcage comes together.
I call the primary back. They say that they can't order the mri guided biopsy, so they can't call for authorization. The doc just wants me to get evaluated over at Stony Brook. UGH. I call back Medical Arts, crying. They tell me that I should call my insurance company directly and the fact that it says 'bi-rads 4 suspicious abnormality' I should have no problem getting authorization. She asks me to try to calm down and to call back if I need further assistance. I cry all the way home now wondering what bi-rads 4 means.
I get home...still crying...now I can't even dial the phone because I don't know what my voice will sound like when someone answers. After calming down and explaining why I'm crying to a sympathetic Cassie, I call the insurance company. I get disconnected 3 times. On the 4h try, I speak with someone who wants the insurance code for the procedure and the referring doctor. I tell her I don't know the code and my ob/gyn, who should be the referring doctor, is out of town until November 24th...I start crying again. She tells me to call Medical Arts Imaging and get the code from them. I call and get put on hold while they try to locate the person who I was speaking with earlier. Ali texts me to pick her up and I, frustrated, hang up the phone and drive, while sobbing at times, to get her.
At this point I am beyond done. I think to myself, maybe I need to take one step back before I can move forward. While waiting for Ali to come to the car, I put in a call to Stony Brook and leave a message. Ali looks at me and I start crying again. She volunteers to drive and I'm more than happy to hand over the keys.
When I get home, I'm calm enough to call Dave. He says, "Why don't you call the ob/gyn's service and see what they have to say." I think, why didn't I think of this in the first place? I call and give as little explanation as I can to the girl on the other end. I tell her I need an script from Dr. Loy to get the procedure done, as well as an authorization number from Empire. I give her my numbers to call if there is a problem and tell her the date and place of the procedure to give to Annette when she comes in on Monday (the office staff is there checking messages everyday).
Stony Brook calls and I tell her my plan of action. I have decided that, if there is a problem with getting the script and/or the authorization, I will be getting all of my tests and results (I have all except the rest of the MRI pics) up until this point and I will make an appointment as a new patient at Stony Brook. She said, ideally, I would have the biopsy report before coming in, but this could work too.
THIS SHOULDN'T BE THIS DIFFICULT!
I call Medical Arts. They give me an appointment for this Thursday, Nov. 20th. They just need the script from the doctor and an approval from my insurance company. I call my primary care physician and tell the receptionist what I need. They call me back and leave a message on my cell phone. While that's happening, I am getting my echocardiogram--the tech actually checked two other places that have never been checked before--one was the carotid artery and the other was the place where your ribcage comes together.
I call the primary back. They say that they can't order the mri guided biopsy, so they can't call for authorization. The doc just wants me to get evaluated over at Stony Brook. UGH. I call back Medical Arts, crying. They tell me that I should call my insurance company directly and the fact that it says 'bi-rads 4 suspicious abnormality' I should have no problem getting authorization. She asks me to try to calm down and to call back if I need further assistance. I cry all the way home now wondering what bi-rads 4 means.
I get home...still crying...now I can't even dial the phone because I don't know what my voice will sound like when someone answers. After calming down and explaining why I'm crying to a sympathetic Cassie, I call the insurance company. I get disconnected 3 times. On the 4h try, I speak with someone who wants the insurance code for the procedure and the referring doctor. I tell her I don't know the code and my ob/gyn, who should be the referring doctor, is out of town until November 24th...I start crying again. She tells me to call Medical Arts Imaging and get the code from them. I call and get put on hold while they try to locate the person who I was speaking with earlier. Ali texts me to pick her up and I, frustrated, hang up the phone and drive, while sobbing at times, to get her.
At this point I am beyond done. I think to myself, maybe I need to take one step back before I can move forward. While waiting for Ali to come to the car, I put in a call to Stony Brook and leave a message. Ali looks at me and I start crying again. She volunteers to drive and I'm more than happy to hand over the keys.
When I get home, I'm calm enough to call Dave. He says, "Why don't you call the ob/gyn's service and see what they have to say." I think, why didn't I think of this in the first place? I call and give as little explanation as I can to the girl on the other end. I tell her I need an script from Dr. Loy to get the procedure done, as well as an authorization number from Empire. I give her my numbers to call if there is a problem and tell her the date and place of the procedure to give to Annette when she comes in on Monday (the office staff is there checking messages everyday).
Stony Brook calls and I tell her my plan of action. I have decided that, if there is a problem with getting the script and/or the authorization, I will be getting all of my tests and results (I have all except the rest of the MRI pics) up until this point and I will make an appointment as a new patient at Stony Brook. She said, ideally, I would have the biopsy report before coming in, but this could work too.
THIS SHOULDN'T BE THIS DIFFICULT!
Thursday, November 13, 2008
Results of MRI
When I spoke to the gyn office today, they told me that the doctor would not be in until November 24th--and they could not give me the results! I, thinking quickly and smartly (not quite sure how this happened--usually I think about many things after the fact) said, "Can you send the results to my primary care physician and they can then give me the results?" They said, "Yes". So I called over to Dr. Shah's office to get the fax number. Called gyn office next and gave them the fax number. Gyn office says, "Call Dr. Shah and give them a heads up that we're sending this and why we're sending it". I do so and an hour later, Dr. Shah's office calls and wants me to come in so they can go over the results with me. A wee bitty alarm goes off in my head--why can't they give me these results over the phone like they've done with so many others? I made the appointment for 5:15 this evening.
The results read: There is an enhancing nodule seen in the medial aspect of the left breast at approximately the 9 o'clock position measuring a centimeter in size and appears to correspond to the mammographic density. The remainder of the right and left breast show no other areas of enhancement. The kinetic features of this mass are plateauing. It has some minimal irregularities of its borders. Therefore we recommend an mri guided biopsy. Then it says 'Bi-Rads 4--suspicious abnormality'...biopsy is recommended.
SOOOOO...the doctor recommended I go to a breast care center for these additional tests. She said that way, if there was anything going on, I could continue with the surgeon who does the biopsy. I called Cassie's best friend, Nicole's, mom Colleen, who works at Stony Brook University and has some connections at the Carol Baldwin breast center there. My doctor had also given me two names of surgeons there and Colleen confirmed both of them. I'll be calling first thing tomorrow morning.
The hurry up and wait continues...
The results read: There is an enhancing nodule seen in the medial aspect of the left breast at approximately the 9 o'clock position measuring a centimeter in size and appears to correspond to the mammographic density. The remainder of the right and left breast show no other areas of enhancement. The kinetic features of this mass are plateauing. It has some minimal irregularities of its borders. Therefore we recommend an mri guided biopsy. Then it says 'Bi-Rads 4--suspicious abnormality'...biopsy is recommended.
SOOOOO...the doctor recommended I go to a breast care center for these additional tests. She said that way, if there was anything going on, I could continue with the surgeon who does the biopsy. I called Cassie's best friend, Nicole's, mom Colleen, who works at Stony Brook University and has some connections at the Carol Baldwin breast center there. My doctor had also given me two names of surgeons there and Colleen confirmed both of them. I'll be calling first thing tomorrow morning.
The hurry up and wait continues...
Tuesday, November 11, 2008
MRI
The bilateral breast mri was a blast. The table was actually quite comfortable--I thought it would be one of those cold, metal ones(shoulda known better--metal in an mri place is quite unlikely), but it was plastic and cushioned with some sort of memory foam.
After getting the iv, I had to somehow keep my left arm straight while sliding down over the two holes provided for each breast. The table is built up with foam covered plastic parts on the head side end and is actually quite comfortable. I was worried about neck pain from being in an awkward position, but after laying there for 25 minutes, I think I'd like to have my bed fashioned similarly--it has the spot like at the p.t. where your head faces down (like a massage table).
I do have to say that it was the loudest MRI I've ever had--even with earphones and a radio station. Also, I knew exactly when they did the iv push for the contrast. I had the sensation of cold in my arm, then a funny taste in my mouth, along with my lips tingling, and a strange smell which kind of reminded me of having sweet air. It made me panic a bit, thinking I was having a reaction, but I stayed calm and made sure I could swallow and breathe.
At the end of the exam, they gave me just two sheets of films to take with me--they said something about them being the 'bips'--these films show the abnormalities of my breast tissue. From what I can see, there are some definite parts that show up brightly in the areas indicated on the mammo and sono reports, but I have no idea whether those parts are good or bad. My sister-in-law Theresa made sure I got the mammo and sono pics and reports as well as these current films. She and Diana were great to have around today. I think having them there kept me calm.
Leaving the place, I began to put all my jewelry back on in the car. Of course, as I am unscrewing the back of my earring, the diamond stud drops in between my seat and the center console. I could see it right inbetween my mri envelope and the seat. So I tried to pull up the mri envelope, but the earring dropped down to the floor. UGH...after searching and searching, with a flashlight, neither Diana, Theresa, nor I could find it. It can't have gone far, but it's proving impossible to find. Crazy. Especially since I had lost this same earring and found it only two months ago. The back had fallen off and I ordered two new backs which cost $35 just for the backs! That's platinum for you. I have no doubt it will be found eventually.
Diana treated us to lunch at Panera Bread and then we wandered around Costco for a while. Of course we couldn't get out of there without spending money. I am now the proud owner of a large roll of Christmas wrapping paper, six cans of Amy's soups, and many other items.
After getting the iv, I had to somehow keep my left arm straight while sliding down over the two holes provided for each breast. The table is built up with foam covered plastic parts on the head side end and is actually quite comfortable. I was worried about neck pain from being in an awkward position, but after laying there for 25 minutes, I think I'd like to have my bed fashioned similarly--it has the spot like at the p.t. where your head faces down (like a massage table).
I do have to say that it was the loudest MRI I've ever had--even with earphones and a radio station. Also, I knew exactly when they did the iv push for the contrast. I had the sensation of cold in my arm, then a funny taste in my mouth, along with my lips tingling, and a strange smell which kind of reminded me of having sweet air. It made me panic a bit, thinking I was having a reaction, but I stayed calm and made sure I could swallow and breathe.
At the end of the exam, they gave me just two sheets of films to take with me--they said something about them being the 'bips'--these films show the abnormalities of my breast tissue. From what I can see, there are some definite parts that show up brightly in the areas indicated on the mammo and sono reports, but I have no idea whether those parts are good or bad. My sister-in-law Theresa made sure I got the mammo and sono pics and reports as well as these current films. She and Diana were great to have around today. I think having them there kept me calm.
Leaving the place, I began to put all my jewelry back on in the car. Of course, as I am unscrewing the back of my earring, the diamond stud drops in between my seat and the center console. I could see it right inbetween my mri envelope and the seat. So I tried to pull up the mri envelope, but the earring dropped down to the floor. UGH...after searching and searching, with a flashlight, neither Diana, Theresa, nor I could find it. It can't have gone far, but it's proving impossible to find. Crazy. Especially since I had lost this same earring and found it only two months ago. The back had fallen off and I ordered two new backs which cost $35 just for the backs! That's platinum for you. I have no doubt it will be found eventually.
Diana treated us to lunch at Panera Bread and then we wandered around Costco for a while. Of course we couldn't get out of there without spending money. I am now the proud owner of a large roll of Christmas wrapping paper, six cans of Amy's soups, and many other items.
Saturday, November 8, 2008
Phone Tag Accomplishment
Last Monday, November 3rd, I called the gyn office to make sure they got the message I had left about having an approval for the mri. Of course, they did not. The gyn office told me I have to make the appointment first, then they can call to get the approval. After making the appointment - and being persuasive because they didn't want to give the appointment without the approval (don't you love the run around?) and went so far as to tell me that if they didn't have the approval by this Friday, they would automatically cancel my appointment - I called the gyn office back and by that time Empire was closed for the day (4:00). They gyn office said they'd call as soon as they got in Tuesday morning. Now, I know with my knee, shoulder and neck mri's it took a good 5 days to get approval, so at this point, I begin to panic and call the healthcare advocate. She tells me to give her a call if they have trouble getting the approval the next day.
Well, Annette from the gyn office calls me Tuesday around 1 and tells me I'm all set-she got everything I needed and sent it over to the mri place. She got the approval in 15 minutes! GO figure. I think this is God's way of telling me not to worry unnecessarily.
My sister in law, Theresa, volunteered along with her sister in law, Diana, to go with me to my mri appointment this Tuesday. I said we could make a day of it and have a nice lunch afterward. I think having Theresa there is so great because she is good at asking the right questions...the ones I usually think about after I leave the doctor's office! With her there, I know I will be waiting for all my pictures and reports before I go home too (something I neglected to do the last time I went). At least this mri place is affiliated with the first one I went to, so it shouldn't be a problem for them to print out everything I need.
Well, Annette from the gyn office calls me Tuesday around 1 and tells me I'm all set-she got everything I needed and sent it over to the mri place. She got the approval in 15 minutes! GO figure. I think this is God's way of telling me not to worry unnecessarily.
My sister in law, Theresa, volunteered along with her sister in law, Diana, to go with me to my mri appointment this Tuesday. I said we could make a day of it and have a nice lunch afterward. I think having Theresa there is so great because she is good at asking the right questions...the ones I usually think about after I leave the doctor's office! With her there, I know I will be waiting for all my pictures and reports before I go home too (something I neglected to do the last time I went). At least this mri place is affiliated with the first one I went to, so it shouldn't be a problem for them to print out everything I need.
Saturday, November 1, 2008
Sweet 16 coming this May
Dave's dad booked the banquet room of the firehouse for Cassie's Sweet 16. She'll be having it on Saturday, May 16th. She's leaning towards a beach theme, but she'll make her decision tonight with the input of a couple of her close friends. My friend, Kim (Ali's friend Steff's mom) is an amazing artist/construction person. She said she'll help me create items for the party, such as a life-sized cut out face lifeguard stand and beach scene for students to take pictures with their faces poking through, and some great table centerpieces, and she just found a castle cake recipe--although for that, I'll probably ask our friend Robin who is a fabulous baker.
Now it's a matter of creating a guest list. It's always difficult trying to figure out who to invite. Family who live close by are easy enough, but I always feel bad inviting far away (an hour or more) family, wondering if they think they're invited them just for a gift...but then again, I'd feel badly if I didn't invite them and they found out, from another family member that there was a party, and they weren't invited. So, my theory is to invite everyone, near and far so that no one's feelings are hurt.
Trying to keep the costs down should be interesting.
Now it's a matter of creating a guest list. It's always difficult trying to figure out who to invite. Family who live close by are easy enough, but I always feel bad inviting far away (an hour or more) family, wondering if they think they're invited them just for a gift...but then again, I'd feel badly if I didn't invite them and they found out, from another family member that there was a party, and they weren't invited. So, my theory is to invite everyone, near and far so that no one's feelings are hurt.
Trying to keep the costs down should be interesting.
Rock Band Party
Ali and Cassie are having a bunch of friends over for a Rock Band Party tonight. It should be a loud, wild, but fun time. We've got chips and dips and some brownies ready and waiting for them. What will Dave and I be doing? I guess trying to stay out of their way, for the most part. One of these days we're going to have an adult-only Rock Band party and invite our friends over and keep the kids up with our loud noises :)...until then, I'm not planning on sleeping too much tonight--I'll post some pics of their party tomorrow.
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