I called the oncologist's office today to see if she had heard any test results.
On the good news front, we know once and for all that both tumors are HER2-.
On the no news front, no Oncotype results are back yet. The breast surgeon is the doctor that technically ordered the test, so the results will go there first. Her office knows to send the results immediately to the oncologist. I really wish the sample had been sent for testi g right after my survey since we would know by now but there is nothing I can do to change things now. there is some confusion as to when the lab actually started the testing, which can take 10 or more days. They called me last week to tell me insurance had approved the test and they were just waiting for the sample but the breast surgeon's office thinks maybe the approval just came through. The oncologist office told me to call back on Friday if I have not heard from them yet. I just want to know so we can figure out my chemo schedule so we can plan out the next 5 months! (I have a Type A personality - I have a compulsive need to plan!). So we continue to wait!
I am supposed to have my second expansion tomorrow but i think I will have to cancel the appointment because Emily is running a fever and will be coming home from daycare as soon as she wakes up from her nap. She will then be home for at least tomorrow and probably Thursday too since her fevers typically last more than 1 day. We went a whole month with no sick days for her which might be a record since last Fall. Of all the months for her to be healthy, March 2011 was that month so I am thankful for that. Hopefully, with Spring coming, there will be fewer viruses floating around!
Tuesday, March 29, 2011
Monday, March 28, 2011
Monday, Monday
Three weeks ago today, I returned home after 3 nights in the hospital after my surgery. With each Monday that has passed since then, I wake up each morning feeling MUCH better than I did the day before. It is really odd that Monday is such a magical day, especially since the weekends are more exhausting than weekdays with the kids home to entertain. Next Monday, I expect to start chemo so my Monday feeling better might come to an end!
I started driving yesterday, so I was able to get out of the house by myself today which was nice - a Reiki appointment at the hospital, Walmart and CVS. Thrilling stuff! I spent the rest of the day finishing the Twilight book series. Thanks to Micah for the suggestion! I actually like reading on the iPad more than I thought I would. Next up is Northanger Abbey by Jane Austen which was recommended by my cousin Kara and friend Trang.
Not much else to report. Still waiting for the Oncotype results, praying for a very low score so maybe I won't be starting chemo next week. I need to call the oncologist tomorrow to check in and see if she has heard anything. I have been inhaling water since my appointment with her last week, which I have termed "Operation Hydration." I am trying to drink 96oz of water a day so my veins are prominent enough to avoid getting a port for chemo. I don't think my veins look any better but it does not help that it is still so bloody cold here - temperatures hovering around freezing every day for the last week. We might hit the 50s this week - woohoo! I have had enough of winter. Somehow it is unseasonably warm in Florida (in the 90s) and unseasonably cold here. I hope Spring comes soon!
I started driving yesterday, so I was able to get out of the house by myself today which was nice - a Reiki appointment at the hospital, Walmart and CVS. Thrilling stuff! I spent the rest of the day finishing the Twilight book series. Thanks to Micah for the suggestion! I actually like reading on the iPad more than I thought I would. Next up is Northanger Abbey by Jane Austen which was recommended by my cousin Kara and friend Trang.
Not much else to report. Still waiting for the Oncotype results, praying for a very low score so maybe I won't be starting chemo next week. I need to call the oncologist tomorrow to check in and see if she has heard anything. I have been inhaling water since my appointment with her last week, which I have termed "Operation Hydration." I am trying to drink 96oz of water a day so my veins are prominent enough to avoid getting a port for chemo. I don't think my veins look any better but it does not help that it is still so bloody cold here - temperatures hovering around freezing every day for the last week. We might hit the 50s this week - woohoo! I have had enough of winter. Somehow it is unseasonably warm in Florida (in the 90s) and unseasonably cold here. I hope Spring comes soon!
Thursday, March 24, 2011
Mom
Mom is headed to the airport for her flight to Orlando after spending the last 3 weeks with us. She leaves behind some lovely New Jersey "spring" weather - almost a foot of snow between a small storm on Monday and a bigger storm yesterday and overnight (which resulted in no school yesterday and a delayed opening today). I know she is looking forward to getting back to her husband and her much quieter life. I am not going to lie, our house can be really loud at times, mostly because of the 2-year-old girl child! ;)
I am SO blessed to have a mother who was willing and able to give up a month of her life, including a week in January right after the diagnosis, to be here for us. She was my shoulder to cry on, my nurse to deal with all the yucky post-biopsy and surgery stuff, my chauffeur, my masseuse, our chef, our laundry-doer, etc. She made sure Sam was fed and had water. She packed lunches and took the kids to and from school. She told me to rest when I needed it. She played with the kids. I am sure I am leaving many things out. She has always been an incredibly supportive mother but this went above and beyond the call of duty. I really am so lucky to have her in my life and I love her so very much.
I miss her already!
I am SO blessed to have a mother who was willing and able to give up a month of her life, including a week in January right after the diagnosis, to be here for us. She was my shoulder to cry on, my nurse to deal with all the yucky post-biopsy and surgery stuff, my chauffeur, my masseuse, our chef, our laundry-doer, etc. She made sure Sam was fed and had water. She packed lunches and took the kids to and from school. She told me to rest when I needed it. She played with the kids. I am sure I am leaving many things out. She has always been an incredibly supportive mother but this went above and beyond the call of duty. I really am so lucky to have her in my life and I love her so very much.
I miss her already!
Tuesday, March 22, 2011
Final pathology report and unexpected visit with my breast surgeon
I now have a copy of my final pathology report from the surgery and can now confirm the following:
When we stopped at the breast surgeon's office to get a copy of the report and to make my follow up appointment and my breast surgeon happened to be in the office between surgeries. It was nice to see her and she asked if I wanted to "flash her" so she quickly examined me. She literally winced when she saw how "full" I was from the expansion. She was happy with how everything is healing (as was the plastic surgeon). We decided I did not need to come back for a formal follow-up appointment, which was nice.
There had been some disagreement between Craig/my Mom and I about the breast surgeon's thoughts on my lymph nodes going into the surgery. I thought she was not worried until she got in there and saw them but Craig/Mom thought she was worried there would be lymph node involvement before she even started the surgery. Turns out Craig/Mom were right. She did think the cancer had spread to the lymph nodes but never let on, which I appreciate! She also was worried during the surgery she could not get clean margins to the skin so was happy to see the pathology results. I am happy I went with the "meticulous" surgeon as she worked her butt off to get me these awesome results!
I don't have to see her again until a month after the implants are done. At that point, she'll teach me how to do self-exams, since I do still have breast tissue left in my chest. Then, I will see here annually. I am so happy that the Breast Center referred me to her on January 14 and I told her so yesterday. She has been such a wonderful doctor and person in literally my darkest days. I am kind of sad that I won't see her again for a few months!
- There were 2 primary tumors (not 3 or 4 as we originally feared) measuring 2.0cm and 1.1cm. The tumors were 1.5cm apart and in the same quadrant of my breast, not different as originally thought.
- Once again, the pathologist only tested the HER2 status on 1 tumor, arguing that the tumors were so close together they would have the same characteristics. The medical oncologist did not like this line of thinking and is making the pathologist do the test over. Dr.E gets things done and does not care who she pisses off in the process!
- Margins were clear/negative - 1.0cm to the chest wall (which is a HUGE margin) and 0.6cm to the skin.
When we stopped at the breast surgeon's office to get a copy of the report and to make my follow up appointment and my breast surgeon happened to be in the office between surgeries. It was nice to see her and she asked if I wanted to "flash her" so she quickly examined me. She literally winced when she saw how "full" I was from the expansion. She was happy with how everything is healing (as was the plastic surgeon). We decided I did not need to come back for a formal follow-up appointment, which was nice.
There had been some disagreement between Craig/my Mom and I about the breast surgeon's thoughts on my lymph nodes going into the surgery. I thought she was not worried until she got in there and saw them but Craig/Mom thought she was worried there would be lymph node involvement before she even started the surgery. Turns out Craig/Mom were right. She did think the cancer had spread to the lymph nodes but never let on, which I appreciate! She also was worried during the surgery she could not get clean margins to the skin so was happy to see the pathology results. I am happy I went with the "meticulous" surgeon as she worked her butt off to get me these awesome results!
I don't have to see her again until a month after the implants are done. At that point, she'll teach me how to do self-exams, since I do still have breast tissue left in my chest. Then, I will see here annually. I am so happy that the Breast Center referred me to her on January 14 and I told her so yesterday. She has been such a wonderful doctor and person in literally my darkest days. I am kind of sad that I won't see her again for a few months!
Medical Oncologist appointment
Yesterday, after the expansion appointment, we headed to the hospital to meet with the to talk about next steps. I was really dreading this appointment as I am still in the surgery recovery stage and not looking forward to the chemo phase and its related side effects.
The oncologist opens the appointment by saying something like, "If we can avoid chemotherapy for you, that is my goal." At that point, I said, "Thank you very much" and tried to walk out the door. Unfortunately, in my post-expansion pain, I definitely could not outrun her (or even Emily) so we all laughed and started talking about chemo.
First up, they will run the Oncotype DX test on my removed tissue. This test predicts the likelihood of recurrence in the next 10 years. It comes up with a score and a percentage. If the percentage is 10% or less (give or take a few percentage points), chemo would not be necessary as hormone therapy (tamoxifen) will do enough to lower my recurrence chances to a livable percentage (6%-ish). We are PRAYING for a low score on this test. Unfortunately, the oncologist does not think I will be so lucky - she thinks I will fall more in the mid-range of scores. (According to her, she is pretty good at guessing where people will fall with only a few exceptions.) In this case, she would recommend chemo for some and not others. Given my age and the fact that I had 2 tumors (and therefore some really messed up DNA in my right breast), she would recommend chemo for me.
Then our conversation turned to the type of chemo. Previously, she recommended a pretty aggressive regimen - cytoxan, taxotere and adriamycin - given together for 6 cycles, every 3 weeks. When we got the great pathology results from the surgery, I was all prepared to go in and fight her to tone down the chemo regimen. I am all about being aggressive and making sure this NEVER comes back but I don't want to needlessly kill myself with chemo for no reason. Luckily, I did not have to fight her at all.
The chemo regimen she is proposing is cytoxan and taxotere for 4 cycles, every three weeks. Common side effects are hair loss (a certainty in 3-6 weeks), nausea and vomiting (manageable with drugs) and fatigue (which I just need to trudge through). She is very supportive of my staying out of work for the duration of my treatment so I can focus on feeling my best. (I am lucky to work for a company where this is possible.) She would want to get started it the next 2 weeks - so the week of 4/4 or 4/11. Even with starting the week of 4/11, I think I will have JUST enough time to swap out my expanders for implants and heal before our Disney trip at the end of the summer. That would be OUTSTANDING! While I am obviously not happy about having chemo, this is the best scenario from a regimen perspective so I left the appointment much more positive than I thought I would.
Given that there will likely only be 4 cycles, I am leaning towards not getting a port. The oncologist looked at my veins and I guess I am really dehydrated so I need to plump myself with water if I want to avoid the port. She told me the chemo nurses would not be happy if I walked in for a treatment with my veins! So, now I need to drink a TON of water for the next 2 weeks and WOW her at my next appointment!
The Oncotype DX test takes 10 days if she rushes it, which she has, so hopefully we'll know next week. We (and the oncologist) are a little annoyed the slides were not sent for the test right after the surgery since we would have the results by now, but oh well... it gives me more time to recover from surgery before starting chemo.
The oncologist also agreed with the breast surgeon that there is no need for me to see a radiation oncologist so radiation is OFFICIALLY off the table. Woohoo!!!!
The oncologist opens the appointment by saying something like, "If we can avoid chemotherapy for you, that is my goal." At that point, I said, "Thank you very much" and tried to walk out the door. Unfortunately, in my post-expansion pain, I definitely could not outrun her (or even Emily) so we all laughed and started talking about chemo.
First up, they will run the Oncotype DX test on my removed tissue. This test predicts the likelihood of recurrence in the next 10 years. It comes up with a score and a percentage. If the percentage is 10% or less (give or take a few percentage points), chemo would not be necessary as hormone therapy (tamoxifen) will do enough to lower my recurrence chances to a livable percentage (6%-ish). We are PRAYING for a low score on this test. Unfortunately, the oncologist does not think I will be so lucky - she thinks I will fall more in the mid-range of scores. (According to her, she is pretty good at guessing where people will fall with only a few exceptions.) In this case, she would recommend chemo for some and not others. Given my age and the fact that I had 2 tumors (and therefore some really messed up DNA in my right breast), she would recommend chemo for me.
Then our conversation turned to the type of chemo. Previously, she recommended a pretty aggressive regimen - cytoxan, taxotere and adriamycin - given together for 6 cycles, every 3 weeks. When we got the great pathology results from the surgery, I was all prepared to go in and fight her to tone down the chemo regimen. I am all about being aggressive and making sure this NEVER comes back but I don't want to needlessly kill myself with chemo for no reason. Luckily, I did not have to fight her at all.
The chemo regimen she is proposing is cytoxan and taxotere for 4 cycles, every three weeks. Common side effects are hair loss (a certainty in 3-6 weeks), nausea and vomiting (manageable with drugs) and fatigue (which I just need to trudge through). She is very supportive of my staying out of work for the duration of my treatment so I can focus on feeling my best. (I am lucky to work for a company where this is possible.) She would want to get started it the next 2 weeks - so the week of 4/4 or 4/11. Even with starting the week of 4/11, I think I will have JUST enough time to swap out my expanders for implants and heal before our Disney trip at the end of the summer. That would be OUTSTANDING! While I am obviously not happy about having chemo, this is the best scenario from a regimen perspective so I left the appointment much more positive than I thought I would.
Given that there will likely only be 4 cycles, I am leaning towards not getting a port. The oncologist looked at my veins and I guess I am really dehydrated so I need to plump myself with water if I want to avoid the port. She told me the chemo nurses would not be happy if I walked in for a treatment with my veins! So, now I need to drink a TON of water for the next 2 weeks and WOW her at my next appointment!
The Oncotype DX test takes 10 days if she rushes it, which she has, so hopefully we'll know next week. We (and the oncologist) are a little annoyed the slides were not sent for the test right after the surgery since we would have the results by now, but oh well... it gives me more time to recover from surgery before starting chemo.
The oncologist also agreed with the breast surgeon that there is no need for me to see a radiation oncologist so radiation is OFFICIALLY off the table. Woohoo!!!!
Monday, March 21, 2011
First expansion
I saw the plastic surgeon today for the first expansion of the tissue expanders I have in preparation for the insertion of the implants later this year. Luckily, he was able to expand me a lot during the actual surgery so I should not need many additional expansions. Good thing, because today was NOT a pleasant experience. He had told me the actual expansion would be easy but I would be sore after. The actual expansion was quite unpleasant and now I feel like I have basketballs glued to my chest, rather than softballs. After the expansion of the first side, I got incredibly dizzy and thought I was going to pass out. This is not the first time this has happened to me during a medical procedure but it s definitely my worst incident. Then, he had to do the second side which made me feel even worse. I basically just laid there taking deep breaths for a while, with a cold compress on my head and a garbage can next to me. Luckily, I got myself calmed down before I needed the can! Somehow, I tolerated the sentinel node biopsy dye injection so well and nearly lost it with this. Very unexpected! It is going to take a lot for me to do another expansion...
I had to recover kind of quickly so we could get to the appointment with the oncologist on time. That went really well and I will provide an update on that later. The Valium I took is kicking in and I need to rest...
I had to recover kind of quickly so we could get to the appointment with the oncologist on time. That went really well and I will provide an update on that later. The Valium I took is kicking in and I need to rest...
Friday, March 18, 2011
Cleaner!
I took my first post-drain shower today and I feel cleaner than I have felt in 2 weeks. I actually used shampoo, TWICE, and conditioner. I was able to use soap on most of my body. (I am still avoiding the healing incisions.) It felt wonderful and I could have stayed in there for hours! My mean mother would not let me put deoderant on until the doctor approves it so I will probably be stinky again in hours but it is nice to be clean for now!
Everything seems to be healing well and I am feeling pretty good. I still get tired by the end of the day and am definitely sore but I am down to just Tylenol during the day and Advil at night, so I feel like that is an improvement. I still am not ready to drive and not sure when I will feel ready to. My chest area and arms are still so tight that I worry about my reaction time. Luckily we have Mom here until next Thursday so chauffeur me around!
It is a beautiful day in NJ - our first taste of Spring. I think it is currently warmer outside than it is in the house! Of course, the temps are supposed to go back down into the 50s for the weekend, but I'll enjoy today while it lasts!
Everything seems to be healing well and I am feeling pretty good. I still get tired by the end of the day and am definitely sore but I am down to just Tylenol during the day and Advil at night, so I feel like that is an improvement. I still am not ready to drive and not sure when I will feel ready to. My chest area and arms are still so tight that I worry about my reaction time. Luckily we have Mom here until next Thursday so chauffeur me around!
It is a beautiful day in NJ - our first taste of Spring. I think it is currently warmer outside than it is in the house! Of course, the temps are supposed to go back down into the 50s for the weekend, but I'll enjoy today while it lasts!
Wednesday, March 16, 2011
I am DRAIN-FREE!!!!!!!
One of my drains was not operating as it was supposed to this morning so I called the plastic surgeon's office to find out what to do about it. Since they were not putting out much and I was scheduled to have the last 2 taken out tomorrow, they told me to just come in today for the removal. It feels AWESOME to have them gone. I can't shower for at least 24 hours, so Friday I plan to take the longest shower of my entire life. It was impossible to get myself really clean with those things in and I am not going to lie, I don't smell very good and my hair is scary but by Friday mid-morning, I will be a whole new woman! Hurray for the little things in life!
Monday, March 14, 2011
Pathology Results are In :) :) :)
My breast surgeon called a little while ago with GREAT news about my final pathology results:
Two months ago today I found out I had breast cancer - the worst day of my life. I won't say today is one of the best days of my life since I still, you know, had cancer, but I think it is the best day since January 14th!!!
Thank you SO MUCH for all the prayers and good wishes over the last 2 months!!!!
- NO cancer in the left side
- Lymph nodes on both sides are totally CLEAR
- NEGATIVE (or clear) margins in the right side which should mean no radiation
- Invasive tumors (cancer broke through duct wall) were 2-ish and 1.1cm in size with evidence of DCIS (ductal carcinoma in situ - additional cancer that had not yet broken through the duct wall) in the right side
Two months ago today I found out I had breast cancer - the worst day of my life. I won't say today is one of the best days of my life since I still, you know, had cancer, but I think it is the best day since January 14th!!!
Thank you SO MUCH for all the prayers and good wishes over the last 2 months!!!!
2 drains gone!
I saw the plastic surgeon this afternoon for a quick follow up visit. He says I look "great" and he was able to take out 2 of the 4 drains - of course not the 2 drains that are bothering me the most but it does feel great to have 2 of them gone!!! He said I am so close to being drain-free that I was able to make an appointment for this Thursday where hopefully he can take out the other 2 rather than having to wait until Monday. I would be beyond happy to get rid of these things by the weekend. No more hiding them under bulky clothes AND I would finally be able to sleep on my side. Ahhhhh, nirvana! It is amazing what you get excited about after a bilateral mastectomy! :)
I am feeling so much better today - the best I have felt since before the surgery but the visit to the doctor did kind of wear me out so I am going to nap before the kiddies get home!
I am feeling so much better today - the best I have felt since before the surgery but the visit to the doctor did kind of wear me out so I am going to nap before the kiddies get home!
Saturday, March 12, 2011
The hospital stay
My surgery finally wrapped up late Friday night - maybe 10:30ish? Craig and Mom saw the breast surgeon when she was done at 9ish and learned the good news about the clear lymph nodes. Turns out the surgeon was worried that there would be cancer in the nodes when she first got in there because they were "hard" or something like that AND she had to call the pathologist back in because she identified a few more nodes on my right side (along the rib cage rather than under my armpit) that she wanted tested. In all, I lost 5 nodes on the right side and 2 on the left. Not bad at all! She also was able to save my left nipple because no evidence of cancer was shown in that part of the tissue. (I knew going into the surgery that the right one would be removed due to the location of the tumors.) A while later when the plastic surgeon was done, he went to see Craig and Mom to let them know his part of the surgery had gone well too.
I was in recovery for a while. I remember the final time I woke up, as I am sure I had probably been in and out a few times before I really woke up. The first thing I said was "ouch." I was a tad bit sore. I kept trying to get the attention of the nurses wandering around and when I did, my next word was "family." I really wanted to see Craig and Mom. They came in not long after and it was so great to see them. I was so happy the surgery was done. The time flew by for me :) not so much for them! They finally wheeled me up to my room at around 1am. Luckily I was in my own room! It was tiny but no roommate.
The weekend is kind of a blur. My plastic surgeon was not lying when he told me the recovery from this kind of surgery was painful but I had lots of meds for the first day - morphine, valium, zofran (anti-nausea because my system did not like the anesthesia and/or morphine) and others, I am sure. I was REALLY loopy that first day - I would be talking and then all of the sudden stop because I had no idea what I was talking about and neither did the other people in the room. It was a bit scary to me but normal, I guess. My vision was also blurry for a little while - I could read a sign across the room with no issues but had trouble reading stuff on my Blackberry. That cleared up after a while.
Day 2 (Sunday) was really rough. They shut off the morphine pump because the plastic surgeon thought that was partially responsible for the nausea but no one really explained to me that (1) pain medication would only be given on an "as needed" basis and (2) what kind of medication was available to me. I basically got behind in the pain management and the nurse and nurses aides were not particularly helpful or sympathetic. By mid-afternoon, I wanted to talk to my plastic surgeon because of the pain and something else I was worried about and the nurse really did not want to call him, telling me he'd check in that evening and they would talk to him them. My Mom went all "Mother Hen" on her and the nurse finally called him. (Thank God for my Mom!!) Within 2 minutes, my cell phone rang and it was the plastic surgeon. He totally talked me down from the ledge and asked me if they had been given me any valium (which helps relax the muscles along with its other function) which they had not so he told me I should have some. I could not completely tell but I think he was a bit annoyed with the nursing staff. He did not seem at all annoyed with me that I insisted on talking to him. (I could hear his 16-month-old daughter in the background.) Have I mentioned how much I LOVE my plastic surgeon?
Things got a little better from there but I could not wait to get the hell out of the hospital. My advice to anyone having surgery - try to have it during the week. The nurse I had for just the few hours I was in the hospital on Monday morning was AMAZING! Nice and caring and attentive. (My weekend overnight nurse was very nice but I did not see him much since I was sleeping for most of that time.) My other advice is make sure (with a competent other adult in the room who is not in pain) that you completely understand what medications they are automatically giving you, what meds are available, what they are for and how often you can take them. Don't let yourself get behind in the pain because it really sucks to try and get caught up!!!
After the plastic and breast surgeons both cleared me, we headed home. They kids were at daycare so I had time to get comfortable and nap before they came home. It felt great to be home and taken care of by Craig and my Mom. No more waiting for pain meds. The service was quick and kind! ;) It was great to see the kids on Monday night although the flurry of activity was a bit exhausting.
On Tuesday, a visiting nurse came by the check me out and all was good except I was still having stomach issues with the pain medication (vicodin). I decided to stop taking it and just take advil and tylenol for the pain and the valium to relax the muscles. At this point, I only take the valium overnight as it makes me a bit tired during the day. I am definitely still quite sore especially because I have these 4 drains that get the post-surgical fluid out of my body. They are incredibly annoying to hide and cause some major soreness where they come out of my skin. I hope to get rid of 2 of them when I see the plastic surgeon on Monday and the other 2 a week later.
I must say the recovery has been harder than I thought it would be. It hurts and I am tired but I am CANCER-FREE so it is worth every ache and pain I have and continue to go through! Each day really is better and better. Yesterday I even walked to the end of the driveway to get the mail - my first venture outside the house. It was thrilling! :) After 2 days of horrible rain, it was nice to get some fresh air!
I was in recovery for a while. I remember the final time I woke up, as I am sure I had probably been in and out a few times before I really woke up. The first thing I said was "ouch." I was a tad bit sore. I kept trying to get the attention of the nurses wandering around and when I did, my next word was "family." I really wanted to see Craig and Mom. They came in not long after and it was so great to see them. I was so happy the surgery was done. The time flew by for me :) not so much for them! They finally wheeled me up to my room at around 1am. Luckily I was in my own room! It was tiny but no roommate.
The weekend is kind of a blur. My plastic surgeon was not lying when he told me the recovery from this kind of surgery was painful but I had lots of meds for the first day - morphine, valium, zofran (anti-nausea because my system did not like the anesthesia and/or morphine) and others, I am sure. I was REALLY loopy that first day - I would be talking and then all of the sudden stop because I had no idea what I was talking about and neither did the other people in the room. It was a bit scary to me but normal, I guess. My vision was also blurry for a little while - I could read a sign across the room with no issues but had trouble reading stuff on my Blackberry. That cleared up after a while.
Day 2 (Sunday) was really rough. They shut off the morphine pump because the plastic surgeon thought that was partially responsible for the nausea but no one really explained to me that (1) pain medication would only be given on an "as needed" basis and (2) what kind of medication was available to me. I basically got behind in the pain management and the nurse and nurses aides were not particularly helpful or sympathetic. By mid-afternoon, I wanted to talk to my plastic surgeon because of the pain and something else I was worried about and the nurse really did not want to call him, telling me he'd check in that evening and they would talk to him them. My Mom went all "Mother Hen" on her and the nurse finally called him. (Thank God for my Mom!!) Within 2 minutes, my cell phone rang and it was the plastic surgeon. He totally talked me down from the ledge and asked me if they had been given me any valium (which helps relax the muscles along with its other function) which they had not so he told me I should have some. I could not completely tell but I think he was a bit annoyed with the nursing staff. He did not seem at all annoyed with me that I insisted on talking to him. (I could hear his 16-month-old daughter in the background.) Have I mentioned how much I LOVE my plastic surgeon?
Things got a little better from there but I could not wait to get the hell out of the hospital. My advice to anyone having surgery - try to have it during the week. The nurse I had for just the few hours I was in the hospital on Monday morning was AMAZING! Nice and caring and attentive. (My weekend overnight nurse was very nice but I did not see him much since I was sleeping for most of that time.) My other advice is make sure (with a competent other adult in the room who is not in pain) that you completely understand what medications they are automatically giving you, what meds are available, what they are for and how often you can take them. Don't let yourself get behind in the pain because it really sucks to try and get caught up!!!
After the plastic and breast surgeons both cleared me, we headed home. They kids were at daycare so I had time to get comfortable and nap before they came home. It felt great to be home and taken care of by Craig and my Mom. No more waiting for pain meds. The service was quick and kind! ;) It was great to see the kids on Monday night although the flurry of activity was a bit exhausting.
On Tuesday, a visiting nurse came by the check me out and all was good except I was still having stomach issues with the pain medication (vicodin). I decided to stop taking it and just take advil and tylenol for the pain and the valium to relax the muscles. At this point, I only take the valium overnight as it makes me a bit tired during the day. I am definitely still quite sore especially because I have these 4 drains that get the post-surgical fluid out of my body. They are incredibly annoying to hide and cause some major soreness where they come out of my skin. I hope to get rid of 2 of them when I see the plastic surgeon on Monday and the other 2 a week later.
I must say the recovery has been harder than I thought it would be. It hurts and I am tired but I am CANCER-FREE so it is worth every ache and pain I have and continue to go through! Each day really is better and better. Yesterday I even walked to the end of the driveway to get the mail - my first venture outside the house. It was thrilling! :) After 2 days of horrible rain, it was nice to get some fresh air!
Friday, March 11, 2011
The surgery
I cannot believe it was a week ago that I was passing the time, waiting to go to the hospital for my "4pm" surgery. I am starting to feel like a semi-human again, so I am ready to recount the events of the day.
The posse (Craig, Mom, Dad, Aunt Patty) and I headed to the hospital for our planned 12:30pm arrival. That is about the ONLY thing that was on time all day. We waited until almost 2pm before they finally took me into the pre-surgical area. I was supposed to be at nuclear medicine at 2pm for my radioactive dye injection so I was a bit nervous that things were already late. I had to go into the pre-op area by myself (with the nurse, of course) and it was a bit overwhelming. I felt really, really alone. (I had just read in one of my cancer books that morning that there are times in your journey when you really are on your own and that was one of those times.)
My assigned nurse was Conny, a 15 year breast cancer survivor. She was so nice and caring and exactly the person I needed at that moment. She was a little confused at first when looking at my file. She started by asking me what I had already had done up to that point. I was not sure how to answer the question so I told her the plastic surgeon had marked me up the night before. She was still confused so she asked me basically what I was there for. I was a little unsettled by the question but I told her a bilateral mastectomy with tissue expander reconstruction. It turned out that she only had the paperwork from my plastic surgeon (so the reconstruction) but nothing from the breast surgeon (so the actual mastectomy). We had a chuckle over that and she went off to find the complete paperwork. Once she had that, she asked me the standard medical questions, got my IV in and rushed me off to nuclear medicine since I was already 45 minutes late.
The dye injection was SO much easier than I had thought it would be. I am not sure if I just had a really good surgeon who did it or I had let my imagination run wild. It was not the most comfortable injection but totally bearable. The surgeon looked a bit like Grizzly Adams - maybe that distracted me! ;) I had to wait there for a while until the dye made its way to the nodes so the surgeon could find them with the scanner and then mark their placement with an "X" on my skin. Pretty high tech! :)
Then it was back to pre-op to wait and wait and wait... Unfortunately, Craig had left by the time I got back there because he had to take Raymond to golf class so I was bummed I did not get to see him but my mom and dad kept me company, until dad had to leave to take care of the kids so Craig could come back. We saw my breast surgeon at around 4pm (my surgery time) and found out she still had 1 more procedure before me. (The first surgery of the day in my OR had run late or started late so they whole schedule was off.) So we just kept waiting as more and more people got taken for their procedures. At the end, there were only 2 or 3 other people in pre-op and they all seemed to be people who had come from the ER - no other scheduled surgeries.
I was feeling a bit impatient and frustrated. I had my "cheering crowd" all ready for the 4pm start and now it was nearly 6pm. I felt like no one was thinking about me anymore - I know not true but you are not exactly rational while waiting for major cancer-related surgery. The man in the pre-op area right next to me was in for some hand surgery after an injury at work. To confirm they have the right person, doctors and nurses are always asking for your name and date of birth. His date of birth was June 11, which is the day my cousin Cathy lost her battle with melanoma in 2010. I immediately knew I was not alone and it was the most comforting feeling. I knew my angel cousin (and everyone else she was hanging out with in heaven that night) were right there beside me.
At some point, my plastic surgeon and breast surgeon came by to make the final determination on how to do the surgery. The night before the plastic surgeon had done 2 mark-ups on my chest so he could get the breast surgeon's advice. The prodded and squished and pulled at me (nicely apologizing the whole time) and made their decision. I am pretty sure the way they did it made the breast surgeon's job a bit more difficult but will result in a better cosmetic outcome. I am SO happy I went with my breast/plastic surgeon pair. It was so clear that they work well together and respect each other as physicians. Friday was the first time I had ever seen them together.
Not long after that the anesthesiologist came by the introduce himself and gave me something fun that calmed me down even more :) and then they took me into the OR at almost 6:30pm! I was not awake for long in there but I remember a lot of activity from everyone except my breast surgeon. She stood right next to me, holding my hand and stroking my arm until I fell asleep. It really helped put me at ease. And then I was out!
To be continued...
The posse (Craig, Mom, Dad, Aunt Patty) and I headed to the hospital for our planned 12:30pm arrival. That is about the ONLY thing that was on time all day. We waited until almost 2pm before they finally took me into the pre-surgical area. I was supposed to be at nuclear medicine at 2pm for my radioactive dye injection so I was a bit nervous that things were already late. I had to go into the pre-op area by myself (with the nurse, of course) and it was a bit overwhelming. I felt really, really alone. (I had just read in one of my cancer books that morning that there are times in your journey when you really are on your own and that was one of those times.)
My assigned nurse was Conny, a 15 year breast cancer survivor. She was so nice and caring and exactly the person I needed at that moment. She was a little confused at first when looking at my file. She started by asking me what I had already had done up to that point. I was not sure how to answer the question so I told her the plastic surgeon had marked me up the night before. She was still confused so she asked me basically what I was there for. I was a little unsettled by the question but I told her a bilateral mastectomy with tissue expander reconstruction. It turned out that she only had the paperwork from my plastic surgeon (so the reconstruction) but nothing from the breast surgeon (so the actual mastectomy). We had a chuckle over that and she went off to find the complete paperwork. Once she had that, she asked me the standard medical questions, got my IV in and rushed me off to nuclear medicine since I was already 45 minutes late.
The dye injection was SO much easier than I had thought it would be. I am not sure if I just had a really good surgeon who did it or I had let my imagination run wild. It was not the most comfortable injection but totally bearable. The surgeon looked a bit like Grizzly Adams - maybe that distracted me! ;) I had to wait there for a while until the dye made its way to the nodes so the surgeon could find them with the scanner and then mark their placement with an "X" on my skin. Pretty high tech! :)
Then it was back to pre-op to wait and wait and wait... Unfortunately, Craig had left by the time I got back there because he had to take Raymond to golf class so I was bummed I did not get to see him but my mom and dad kept me company, until dad had to leave to take care of the kids so Craig could come back. We saw my breast surgeon at around 4pm (my surgery time) and found out she still had 1 more procedure before me. (The first surgery of the day in my OR had run late or started late so they whole schedule was off.) So we just kept waiting as more and more people got taken for their procedures. At the end, there were only 2 or 3 other people in pre-op and they all seemed to be people who had come from the ER - no other scheduled surgeries.
I was feeling a bit impatient and frustrated. I had my "cheering crowd" all ready for the 4pm start and now it was nearly 6pm. I felt like no one was thinking about me anymore - I know not true but you are not exactly rational while waiting for major cancer-related surgery. The man in the pre-op area right next to me was in for some hand surgery after an injury at work. To confirm they have the right person, doctors and nurses are always asking for your name and date of birth. His date of birth was June 11, which is the day my cousin Cathy lost her battle with melanoma in 2010. I immediately knew I was not alone and it was the most comforting feeling. I knew my angel cousin (and everyone else she was hanging out with in heaven that night) were right there beside me.
At some point, my plastic surgeon and breast surgeon came by to make the final determination on how to do the surgery. The night before the plastic surgeon had done 2 mark-ups on my chest so he could get the breast surgeon's advice. The prodded and squished and pulled at me (nicely apologizing the whole time) and made their decision. I am pretty sure the way they did it made the breast surgeon's job a bit more difficult but will result in a better cosmetic outcome. I am SO happy I went with my breast/plastic surgeon pair. It was so clear that they work well together and respect each other as physicians. Friday was the first time I had ever seen them together.
Not long after that the anesthesiologist came by the introduce himself and gave me something fun that calmed me down even more :) and then they took me into the OR at almost 6:30pm! I was not awake for long in there but I remember a lot of activity from everyone except my breast surgeon. She stood right next to me, holding my hand and stroking my arm until I fell asleep. It really helped put me at ease. And then I was out!
To be continued...
Thursday, March 10, 2011
Clean(ish)
I took my first shower in a week which felt nice. It is not easy to get really clean with the mobility restrictions and bandages and stuff, but it felt nice to just stand under the warm water. I am SO happy I chopped my hair pre-surgery because the new do is incredibly easy to style.
After the shower, I passed out in the laz-y-boy for a little snooze. It took a lot out of me!
After the shower, I passed out in the laz-y-boy for a little snooze. It took a lot out of me!
Wednesday, March 9, 2011
Slow recovery
It is great to be home and my recovery is progressing slowly - definitely more slowly than I would like but I guess I did have pretty major surgery less than a week ago. I am trying to wean myself off the harsher drugs so that I am not so tired (and weepy).
We are still waiting on the final pathology report which hopefully will come back on Friday or Monday. Then we will know definitively about whether or not I will need radiation. The breast surgeon is hopeful with the lack of lymph node involvement that hopefully the chemo regiminem won't have to be quite to aggressive. she is unsure about radiation but did her best to get clean margins.
Each day is a bit better than the last and I am sleeping ok, which is great. Will update more someday. I have plenty of free time over the next few weeks! :)
We are still waiting on the final pathology report which hopefully will come back on Friday or Monday. Then we will know definitively about whether or not I will need radiation. The breast surgeon is hopeful with the lack of lymph node involvement that hopefully the chemo regiminem won't have to be quite to aggressive. she is unsure about radiation but did her best to get clean margins.
Each day is a bit better than the last and I am sleeping ok, which is great. Will update more someday. I have plenty of free time over the next few weeks! :)
Monday, March 7, 2011
Home sweet home
I made it. Feeing much better than yesterday but still in rough shape, as expected. Loved the nurse I had this morning and wish she had been there all weekend. More at some point later this week.
Sunday, March 6, 2011
Day 2 post surgery
Had kind of a rough day. I'm still pretty sore. Still hoping to go home tomorrow. Thanks for all the emails and blog comments, they really mean a lot to me. Hope to give more of an update tomorrow.
Saturday, March 5, 2011
Day 1 Post-Surgery
Just wanted to let everyone that I am okay. Pretty weak and uncomfortable and acting really loopy The drugs are helping but my affected muscles feel like they have been all stretched out, as expected!
I'll try do a longer post tomorrow or Monday, once I am a little bit back back to my normal self from a mental capacity perspective.
Thanks again for beeing part of my cheering crowd. I Felt your presence me.
I'll try do a longer post tomorrow or Monday, once I am a little bit back back to my normal self from a mental capacity perspective.
Thanks again for beeing part of my cheering crowd. I Felt your presence me.
Out of surgery
Amanda is out of surgery. Everything went fine. Good news is that the lymph nodes came back clear. Other than the surgery starting 2.5hrs late, all went fine. I'm off to bed - more in the morning - Craig.
Friday, March 4, 2011
Time to kick a little cancer ass...
Twenty-seven months ago today, on December 4, 2008, Craig and I woke up early and headed to Naistenklinikka ("Women's Hospital") in Helsinki for my last surgery - the c-section that welcomed Emily into the world. I have a feeling that c-sections are a way more fun "surgery" than a bilateral mastectomy but I am ready for this to be done and dusted. I am ready to be cancer free and an official breast cancer survivor. I am ready to move on to the "maintenance phase" of my treatment plan - chemo. I still cannot believe this is happening but Craig's funny attempts to Jim Bakker-style "HEAL" me have not worked so I guess we have to go the surgical route. :)
We have to be at the hospital at 12:30pm ET and I have my radioactive dye injection at 2:00pm ET for the sentinel node biopsy. The surgery is scheduled for 4:00pm ET but the plastic surgeon warned me it could start later than that. The surgery will be 4-5 hours. Craig will post an update when he can after the surgery but it likely will not be until quite late, after they have seen me in recovery and driven home. But I promise he will post something at some point.
Thank you for all the cheering so far. I will see all of you in the OR as I close my eyes and go to sleep!
We have to be at the hospital at 12:30pm ET and I have my radioactive dye injection at 2:00pm ET for the sentinel node biopsy. The surgery is scheduled for 4:00pm ET but the plastic surgeon warned me it could start later than that. The surgery will be 4-5 hours. Craig will post an update when he can after the surgery but it likely will not be until quite late, after they have seen me in recovery and driven home. But I promise he will post something at some point.
Thank you for all the cheering so far. I will see all of you in the OR as I close my eyes and go to sleep!
Thursday, March 3, 2011
The highest praise
I met with my plastic surgeon tonight so he could mark me up for the surgery tomorrow. He likes to do it the night before since surgery day is generally very rushed. He has not completely decided the best way to do the reconstruction in order to get the best cosmetic results (something about excess skin after nursing 2 kids and my recent 20 lb weight loss). Anyway, I look like one of Emily's art projects but I trust the doctor. (He'll decide the best approach in consultation with the breast surgeon tomorrow.)
As I was leaving the appointment, the plastic surgeon told me something that has made it clear in my mind that I picked the right breast surgeon. His mother-in-law was recently diagnosed with a breast cancer recurrence. She lives near my Dad in NY and since the plastic surgeon did a fellowship at Memorial Sloan-Kettering he has access to ANY of the best breast surgeon's in the area. He chose MY breast surgeon to do his mother-in-law's surgery. I am not sure there could be higher praise for her! I feel a lot more relaxed having that knowledge.
As I was leaving the appointment, the plastic surgeon told me something that has made it clear in my mind that I picked the right breast surgeon. His mother-in-law was recently diagnosed with a breast cancer recurrence. She lives near my Dad in NY and since the plastic surgeon did a fellowship at Memorial Sloan-Kettering he has access to ANY of the best breast surgeon's in the area. He chose MY breast surgeon to do his mother-in-law's surgery. I am not sure there could be higher praise for her! I feel a lot more relaxed having that knowledge.
Spiritual alignment
I have had a very spiritual morning - both from a religious and a "new age" perspective. First thing this morning I went to 8am Mass and had a chance to talk to the pastor, Fr. Dan Murphy afterwards. I love Fr. Dan. We share a last name and went to the same college, Holy Cross. We have a connection. This was the first time since my diagnosis that I was able to tell him about what is going on. I wanted to ask him to pray for me tomorrow and he of course agreed to. He also performed the sacrament of the sick (or anointing of the sick). According to Wikipedia, "Anointing of the Sick is one of the seven Sacraments recognized by the Catholic Church, and is associated with not only bodily healing but also forgiveness of sins." So I am on the road to health AND have been forgiven of my sins. Great start to the day!
Then I had an appointment at the hospital for reiki - "a hands on healing technique designed to create balance and harmony in the body." It focuses on your "chakras" and the practitioner places hands on you in various positions. It was a little new age-y for me but I was very relaxed afterwards!
In 24 hours, I will be at the hospital!
Then I had an appointment at the hospital for reiki - "a hands on healing technique designed to create balance and harmony in the body." It focuses on your "chakras" and the practitioner places hands on you in various positions. It was a little new age-y for me but I was very relaxed afterwards!
In 24 hours, I will be at the hospital!
Wednesday, March 2, 2011
Cancer 'do
So, I have needed a haircut for a while - since probably December but then January happened and life took a little detour. I finally made an appointment for this week in my quest to get my life as tightened up as possible before the surgery. Kind of like "nesting" before you have a baby but for a WAY less fun reason!
Back to the hair... Since I am going to lose all of it in April anyway, I decided to do something a little different. I did not have any ideas before I went for the appointment so I talked to my stylist and told her what was going on. She brought out some books and we picked a hairstyle. It is definitely different and will be very easy to take care of through the surgery and recovery!
Before...
After...
Back to the hair... Since I am going to lose all of it in April anyway, I decided to do something a little different. I did not have any ideas before I went for the appointment so I talked to my stylist and told her what was going on. She brought out some books and we picked a hairstyle. It is definitely different and will be very easy to take care of through the surgery and recovery!
Before...
Tuesday, March 1, 2011
An assignment for all of you
Last week I met with the oncology social worker at the hospital and she gave me a guided imagery CD, "Meditations to Promote Successful Surgery." The creator is a woman by the name of "Bellaruth Naparstek." Doesn't she sound like someone that would narrate a guided imagery CD??? She has the most soothing voice! Anyway, studies have shown that listening to this CD will help speed up healing after surgery so I am giving it a try.
At the start of the recording, I am supposed to picture myself in a special healing place. My place is the overwater bungalow where Craig and I stayed in Bora Bora on our honeymoon - beautiful and very relaxing. While picturing myself there, I am transported to my operating room. While there, I see my "cheering section"watching over and protecting me during the surgery. YOU are my cheering section so I need your help on Friday. I'll be headed to the hospital at around 12pm EST. Please start thinking about me then and then try to really focus positive energy at around 3:30pm as I enter final preparations for the surgery at 4:00pm. I guess there have been studies of people (mostly heart patients) who knew there were people praying for and thinking about them during their surgery. They did better than those who did not know people were people praying for and thinking about them during their surgery. The surgery is expected to last 4-5 hours so keep the positive energy going whenever you think of it. (For my friends in Finland, try to have some good dreams about me! I don't expect you to stay up all night!)
Thanks for all your support and comments! In approximately 72 hours, I will be cancer free!!!
At the start of the recording, I am supposed to picture myself in a special healing place. My place is the overwater bungalow where Craig and I stayed in Bora Bora on our honeymoon - beautiful and very relaxing. While picturing myself there, I am transported to my operating room. While there, I see my "cheering section"watching over and protecting me during the surgery. YOU are my cheering section so I need your help on Friday. I'll be headed to the hospital at around 12pm EST. Please start thinking about me then and then try to really focus positive energy at around 3:30pm as I enter final preparations for the surgery at 4:00pm. I guess there have been studies of people (mostly heart patients) who knew there were people praying for and thinking about them during their surgery. They did better than those who did not know people were people praying for and thinking about them during their surgery. The surgery is expected to last 4-5 hours so keep the positive energy going whenever you think of it. (For my friends in Finland, try to have some good dreams about me! I don't expect you to stay up all night!)
Thanks for all your support and comments! In approximately 72 hours, I will be cancer free!!!
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