Quite a bit has taken place since the surgery. Last Friday afternoon, I heard from Dr. Specht regarding the pathology results. She said my tumor showed a complete pathological response to the chemotherapy and that my lymph nodes all came back negative. I heard the words she was saying but couldn't believe them. I asked questions but wasn't sure I was asking the right questions. I was stumbling for words and Dr. Specht knew it. She kept reinforcing that these are results doctors want for their patients. I was cautiously excited.
We met with my medical team out in Boston on Monday, the 26th. I was excited and anxious leading up to these appointments. I wanted confirmation of what I heard on Friday was correct. I was also hoping, perhaps that I'm now cancer free, the treatment plan would be shorten or change. We first met with Dr. Comander who was kind enough to print out the pathology results. She confirmed what Dr. Specht called and told me. I was beyond excited! We then talked about next steps. I had shared that I had hoped that the treatment plan would somehow change based on these results. Unfortunately, even though I'm clinically cancer free, there is not enough data to support ending my treatment at this stage so I will need to complete the standard of care.
I was crushed and the tears starting flowing as she painted the long road map which consisted of 8 more weeks of chemo (once every 2 weeks) starting mid October, 6 weeks of radiation (once every day) starting mid January and infusion of herceptin once every 3 weeks for a total of 39 weeks beginning mid January to complete a year of the herceptin treatment. There was some confusion as I have always assumed the end date to this journey would be a year since I heard the phase 'a year of treatment.' I was as best prepared for May 2017. With the infusion of herceptin resuming in mid January, my completion date is looking more like end of September or beginning of October 2017. :( A little difficult to explain but I had already had 4 dosages of herceptin during the initial 12 weeks of treatment. I need to have a total of 17 to complete a full year so need 13 more treatments, which equates to 39 weeks since it's once every 3 weeks.
If I look at the entire road map, it is overwhelming and I can't help but cry. I am going to approach as how I have got to this point. I'm simply going to focus on what's next. With that said, I am focused on recovering so that I can take on this next round of chemo. Unfortunately I have been told by many people this next round of chemo will not be easy. I will not get as lucky as the first round as the drug will be more toxic with many side effects (vomiting, lost of appetite, loss of hair, fatigue, etc). I will most likely feel sicker and may not be able to work. I truly do not know how to prepare for such so praying that somehow I get through this next phase as easy as possible.
In the back of my mind, as always, I think about the kids. It has not been easy. Carter and Katherine have been so incredible! They are very understanding of my limitations since surgery and have been so great! Katherine loves helping me put on and take off my jacket. They both enjoy helping me get off from the couch by pushing my back. I should be helping them but the roles have been reversed lately. My heart, at times, hurts for them but other time is beaming with pride. It has been a long few weeks...what I miss the most is hugs from the kids. They have been giving me hugs but are too scared to hurt me. I can't wait until I'm able to get and give them hugs again!
I was so excited about the cancer free news that perhaps I jumped the gun in sharing this news. We all danced around the house when I shared this news. We generally have dance parties at each milestone. I believe Carter has shared this cancer free news with everyone under the sun who has asked. He has asked some tough questions about what is next and we have been honest. I don't know how to answer why we have to continue with the treatment plan other than explaining it is as if your doctor prescribes antibiotics...you just have to see the prescription through. I'm mostly worried about the sick part in this next round of chemo. We have never used the word sick to describe my illness so I'm worried they'll see me truly sick with vomiting and/or other sick like symptoms :(
My last round of chemo was August 18th. My hair is slowly growing back and the kids have noticed. It's pretty exciting stuff! I too am excited but am sad to think that the hair will fall out again once I resume chemo. We have best prepared the kids for the hair loss again. This part of the treatment process seems pretty cruel.
With the drains out this week, I am feeling slightly human again! I have decided to return to work. Since I can not drive, I'm working remotely. I had initially wanted to try out an hour or two but have been doing okay with longer duration. For now, I'll take each day as it comes and do the best that I can...
Thursday, September 29, 2016
Surgery, tubes and drains
It has been roughly two and a half weeks since I had surgery. I'm still in a bit of pain but feeling better each and every day! I had my first set of drains removed a week after surgery. I finally got the last two sets removed this past Monday and am feeling free and overall better with the exception of limited mobility to my arms. My right arm is doing a lot better than my left. I am able to move about 90 degrees. The doctors say this should improve as the weeks progress. If not, I may need OT. Let's hope this isn't the case! I have more than enough doctor's appointment already. :)
The drains were very challenging. They had to be stripped and the fluids had to be measured twice a day. Thanks Mike for being my personal nurse! The process at time was painful. In case you don't know what these drains look like...here's a pic.
I had two on both sides. The best way for me to describe them is that they look like little hand grenades with tubes attached to the body. The fluid is the excess liquid that your body is putting out around the wound. Once the drains are removed, your body retains this excess fluid so it is important to get the fluid level down before removing them to avoid infections.
I wasn't able to take a shower until the drains were removed. Dr. Liao told me to remember 3 things during recovery--keep the area dry, take my antibiotics, and protect my chest area with soft things. To help me remember, I told Dr. Liao I remembered the word SAD (S-Soft, A-Antibiotics, D-Dry) because partially this was how I was feeling during recovery. He laughed and said in his years of practice no one has said this to him. Mike said ADS might be a slightly better word. We had a good laugh. I have a feeling Dr. Liao will remember me. :)
Quick recap of my surgery is it went as well as it could. Dr. Specht removed 14 lymph nodes and performed a double mastectomy. Everything looked good but we needed to wait for the pathology results. My skin was healthy enough for Dr. Liao to go direct-to- implant. The good news is I do not have to get a secondary surgery. The negative thing about direct-to-implant route is that the implants that they used is smaller than my actual size prior to surgery.
Here are some pics with the family from my hospital bed.
Dr. Comander happened to see my name on the board and stopped in to check in on me and say hi. It was a nice surprise.
THANK YOU FAMILY AND FRIENDS FOR ALL YOUR LOVE AND SUPPORT! We are truly touched to be surrounded by so many loving and caring people. We are beyond blessed!
The drains were very challenging. They had to be stripped and the fluids had to be measured twice a day. Thanks Mike for being my personal nurse! The process at time was painful. In case you don't know what these drains look like...here's a pic.
I had two on both sides. The best way for me to describe them is that they look like little hand grenades with tubes attached to the body. The fluid is the excess liquid that your body is putting out around the wound. Once the drains are removed, your body retains this excess fluid so it is important to get the fluid level down before removing them to avoid infections.
I wasn't able to take a shower until the drains were removed. Dr. Liao told me to remember 3 things during recovery--keep the area dry, take my antibiotics, and protect my chest area with soft things. To help me remember, I told Dr. Liao I remembered the word SAD (S-Soft, A-Antibiotics, D-Dry) because partially this was how I was feeling during recovery. He laughed and said in his years of practice no one has said this to him. Mike said ADS might be a slightly better word. We had a good laugh. I have a feeling Dr. Liao will remember me. :)
Quick recap of my surgery is it went as well as it could. Dr. Specht removed 14 lymph nodes and performed a double mastectomy. Everything looked good but we needed to wait for the pathology results. My skin was healthy enough for Dr. Liao to go direct-to- implant. The good news is I do not have to get a secondary surgery. The negative thing about direct-to-implant route is that the implants that they used is smaller than my actual size prior to surgery.
Here are some pics with the family from my hospital bed.
Dr. Comander happened to see my name on the board and stopped in to check in on me and say hi. It was a nice surprise.
THANK YOU FAMILY AND FRIENDS FOR ALL YOUR LOVE AND SUPPORT! We are truly touched to be surrounded by so many loving and caring people. We are beyond blessed!
Sunday, September 11, 2016
Normalcy...glorious but unfortunately short lived!
For those who have been following this blog...sorry I have been a delinquent in blogging. It has been a glorious few weeks without treatments! I'm happy to report, although I'm scared to jinx it, I haven't been blogging because I have been able to sleep! :)
We have done so much as a family and I loved each and every moment! We took one last trip of the summer to visit Mike's parents in GA. My parents came along to lend a helping hand so the kids were in their glory with both sets of grandparents. We were able to piggyback a road trip to FL while we were in GA. It was so nice to 'forget' and live life somewhat normal! Unfortunately my new reality includes constants of calls and emails from the hospital. So if I'm able to block such, it does feel somewhat normal.
When we got back, Carter started school on Wednesday. I can not believe he's in first grade now! The first week of school was been action packed! Carter started his first fall soccer season practice (Thursday) and then lost his first front tooth (Friday)!! We also took family pics over the weekend to wrap up an already busy week.
When I started blogging this draft...surgery was a week away! Now it is a day away! The past week flew by with great memories. Throughout the week, I kept thinking..next week, at this time...and now on the night before the surgery...I can hardly believe it is really happening!
I have been so incredibly blessed to be surrounded by so much love and support. I have been showered with packages and flowers in addition to texts, emails, notes and cards from people near and far. I'm truly humbled by the outpouring of support.
I didn't have much anxiety about the surgery but spoke to the nurse about pre-admission registration last Tuesday. It was then that it started sinking in that I'm actually going to have surgery! This will be the first time in my life that I will have surgery so it feels surreal and scary at the same time. I'm trying to block it out but as the days approaches, the nerves definitely linger during those quiet time when I'm alone. I have hope that everything will work out. I have an amazing team of doctors.
My incredible family surprised me with a good luck surprise party this weekend. JD coordinated with Mike to come over on Saturday afternoon. I didn't think anything about it since this is something we do from time to time. We had a very busy Saturday with ballet for Katherine, soccer and karate for Carter and the town was hosting a fair. The Saturday adventures flew and we headed to JD's and Luke's a tad late. We entered their apartment and my entire family jumped out and shouted SURPRISE!! Everyone was wearing pink! Mike, Carter, Katherine and I did not get the memo (well maybe Mike did but didn't share, ;)) Van bought an extra pink dress for me. I was so touched that everyone came together and did this for me! We enjoyed a nice catered meal and yummy desserts! Thanks JD for coordinating, hosting and being the best little brother a sister could ask for!!
It is the night of the big surgery day. It has been a tough day mentally as I did the best I could to try to not think about the day ahead but also wanted to best prepare the kids for the surgery and my recovery time. Carter was super sweet as usual and prepared multiple cards and drew on chalkboard and signs throughout the house! How did I get so lucky to have such a sweet and thoughtful boy?!
I am full of emotions but wanted to get this post out there as I haven't had a chance to blog. I probably will not have an opportunity to blog again anytime soon but hopefully one of my guest bloggers will help me out. Please keep me in your thoughts and prayers tomorrow!
We have done so much as a family and I loved each and every moment! We took one last trip of the summer to visit Mike's parents in GA. My parents came along to lend a helping hand so the kids were in their glory with both sets of grandparents. We were able to piggyback a road trip to FL while we were in GA. It was so nice to 'forget' and live life somewhat normal! Unfortunately my new reality includes constants of calls and emails from the hospital. So if I'm able to block such, it does feel somewhat normal.
When we got back, Carter started school on Wednesday. I can not believe he's in first grade now! The first week of school was been action packed! Carter started his first fall soccer season practice (Thursday) and then lost his first front tooth (Friday)!! We also took family pics over the weekend to wrap up an already busy week.
When I started blogging this draft...surgery was a week away! Now it is a day away! The past week flew by with great memories. Throughout the week, I kept thinking..next week, at this time...and now on the night before the surgery...I can hardly believe it is really happening!
I have been so incredibly blessed to be surrounded by so much love and support. I have been showered with packages and flowers in addition to texts, emails, notes and cards from people near and far. I'm truly humbled by the outpouring of support.
I didn't have much anxiety about the surgery but spoke to the nurse about pre-admission registration last Tuesday. It was then that it started sinking in that I'm actually going to have surgery! This will be the first time in my life that I will have surgery so it feels surreal and scary at the same time. I'm trying to block it out but as the days approaches, the nerves definitely linger during those quiet time when I'm alone. I have hope that everything will work out. I have an amazing team of doctors.
My incredible family surprised me with a good luck surprise party this weekend. JD coordinated with Mike to come over on Saturday afternoon. I didn't think anything about it since this is something we do from time to time. We had a very busy Saturday with ballet for Katherine, soccer and karate for Carter and the town was hosting a fair. The Saturday adventures flew and we headed to JD's and Luke's a tad late. We entered their apartment and my entire family jumped out and shouted SURPRISE!! Everyone was wearing pink! Mike, Carter, Katherine and I did not get the memo (well maybe Mike did but didn't share, ;)) Van bought an extra pink dress for me. I was so touched that everyone came together and did this for me! We enjoyed a nice catered meal and yummy desserts! Thanks JD for coordinating, hosting and being the best little brother a sister could ask for!!
It is the night of the big surgery day. It has been a tough day mentally as I did the best I could to try to not think about the day ahead but also wanted to best prepare the kids for the surgery and my recovery time. Carter was super sweet as usual and prepared multiple cards and drew on chalkboard and signs throughout the house! How did I get so lucky to have such a sweet and thoughtful boy?!
I am full of emotions but wanted to get this post out there as I haven't had a chance to blog. I probably will not have an opportunity to blog again anytime soon but hopefully one of my guest bloggers will help me out. Please keep me in your thoughts and prayers tomorrow!
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