It has been a tough 2 weeks in between treatments 2 and 3. After the last round of treatment, I caught a cold. With my compromised immune system, I just haven't been able to shake it. I have been coughing nonstop. Of course, I can't help but wonder if anything else is wrong with me. I have googled my symptoms. Not a good idea! I have been advised by my doctor that because my immune system is weaken, it will take my body a little longer to fight off. Once again, I wish there was a fast forward button to this phase. I'll want a pause button once I'm healthy again. 😊
I did manage to have a little fun during the past two weeks. I accompanied my siblings to a charity event that I agreed to participate in prior to knowing my chemo cycle. I was extremely worried I wouldn't be in any shape to go but somehow I managed. I wish I had better memories. I also was able to visit Carter's classroom for a Halloween event. Unfortunately I wasn't able to take the kids trick or treating but they had a good time with neighbors. Thankful for our awesome hood!
I lost pretty much lost all my hair as nurse Nikki warned me. It happened rather fast. I don't know why but this second time around was a tad harder for me. I was sad to see it fall out. I had grown attached to the fuzzy duck hair!! I am also thankful that it held on for the charity runway walk!
I went back to see my plastic surgeon, Dr. Liao, last week. Unfortunately my left arm motion, where the lymph nodes where removed, is not where it should be so he's recommending OT. The referral is rather aggressive of 3x a week for 90 days. With all my appointments and just not feeling well, it is not high on my priority list. I will go for an assessment since I know my arm movement is not normal and where it should. I'm hopeful he/she will provide some exercises I can do at home without having to go in nearly as often.
This journey has been incredibly hard, especially this regime, but I dig deep and try to to focus on the positives. I have met and/or been put in touch with wonderful people. When I first started, a colleague put me in touch with his mom. She battled and beat this awful disease twice! She has been one of my biggest cheerleaders! Thank you Patricia! I also was put in touch with one of Carter's friend's grandmother, who is on the tail end of battling the illness. It has been helpful to have such support system, including my sister, who has been in remission 6 years now. Most recently, I reached out to a teacher aid at Carter's school, who was recently diagnosed. I don't know how but there was an instant connection. My heart breaks for her that she's just starting this journey. We share the same medical oncologist, Dr. Comander. It feels good to be able to pay forward somehow someway. Cancer sucks but it isn't all necessarily bad. It's an exclusive club that bonds people who are fighters! I hope once I'm healthy again that I can somehow and someway give back more.
Wednesday, November 23, 2016
Friday, October 28, 2016
50% down! Slowly getting there...
Restless once again at 3:45am so here we go.
I received my second round of the awful AC chemo drug yesterday. I first met with Dr. Comander to talk about the first round. She was incredibly supportive and apologized that I have to go through all this but there is still just not enough evidence for me to forgo this round despite being clinically disease free. She's hoping some years down the road there is enough evidence to skip this phase for future patients, if there is enough data to support it but as of now everyone is still administering the AC drug. It's a way to dot the i's and cross the t's in my case.
We reviewed protocols after my last round of treatment. I have to take a few drugs a few days after treatment to help with nausea. I wasn't aware I was missing a medication last week so really hoping this week will go a bit better than last. We have an action packed weekend ahead filled with the normal weekend commitments of dance, soccer, etc. in addition to a few special events including a charity fashion show, school's monster bash, Spooktaular outing in the time common and Halloween fun with friends! I am really bummed to be potentially missing out on the fun but hopefully I can make it to some festivities.
While in the infusion room, I had nurse Nikki again. I had her last week and she was great! I miss nurse Ann from MGHW but feel very lucky to be cared for by great, caring providers. I truly think it takes a special someone to be able to work in this profession. They have so much compassionate, empathy, and just incredible people. I also saw nurse Diane today. She previously worked at MGHW but recently joined NHW. It was great to see a familiar face. She came over and to say hi and said Ann told her to look for me! 😊
The treatment process was fairly uneventful. I sat towards the front of the infusion room so wasn't sitting next to anyone. My chemo buddy, Mike, was in and out. He left to take calls. I was left with a book, trashy magazines (thanks Zhanna!), random snacks (I came prepared because you never know when beast mode happens! Unlike MGH, NWH does not have endless snacks.) and my good ole phone.
While administering the Adriamycin drug, since it has to be pushed, I got to catch up with Nikki. We talked about family, mostly the kids, and the planner in me asked questions about what's ahead. I asked her when she thought I would lose my hair again. She said as quickly as this weekend. I'm a bit sad about this because I have grown a little attach to the fuzzy duck hair. 😕 Soon enough, it will return and stay! Nikki also told me I could start herceptin 2-3 weeks after this round of chemo. I assumed I couldn't until I started radiation in January. I was also looking forward to having the month of December 'off' from treatment but in typical Lynne fashion as soon as I heard this, the thought of the quicker we start, the quicker we will be done!! Nikki is going to touch base with Dr. Comander on this. I jokingly said I have December off but my calendar is jammed packed with doctors appointments already. It will be nice to not have treatments so I'll focus on that. I will be meeting with Dr. Tillman, radiology oncologist and again with Dr. Comander. I have to also follow up with Dr. Liao, surgeon, on my left arm. I'm still not sure if I will be needing OT. They were delaying this referral because it would have been too much with chemo.
This past week, I met with Dr. McDonough, my new primary care physician, who specializes with cancer patients and survivors. She came highly recommended and didn't disappoint! Before this cancer diagnosis, I truly had a boring medical history. I made this quick realization when I was completing the new patient survey form. I use to fly through them but now I actually have information to include. I also have more doctors than on my hand!!
Dr. Mc.Donough and I spent a lot of time talking about me. It's hard to articulate but I'm constantly scared yet remain forever hopeful. I heard the great news from the pathological results several time and by many doctors but I continue to worry what if something was missed. I probably really need to stop reading blogs of random strangers! They are a source of inspiration, yet plant random seeds in my head of the worse! How can I truly know I'm disease free? I think anyone who has gone through this can relate. I don't think I'll ever be the same. I scan my body everyday to make sure I'm not missing something. I develop a cough, I worry! I know all this is my new reality. It will take me some time. One the flip side, I learn to cherish each and every day more these days. I often stop and pause to look at Carter and Katherine, give them my undivided attention even if it's just for a few mins daily. I did this before but not often enough. I love their ages. They still think we are cool and enjoy spending time with us so I'm going to try to maximize it while I can!
I received my second round of the awful AC chemo drug yesterday. I first met with Dr. Comander to talk about the first round. She was incredibly supportive and apologized that I have to go through all this but there is still just not enough evidence for me to forgo this round despite being clinically disease free. She's hoping some years down the road there is enough evidence to skip this phase for future patients, if there is enough data to support it but as of now everyone is still administering the AC drug. It's a way to dot the i's and cross the t's in my case.
We reviewed protocols after my last round of treatment. I have to take a few drugs a few days after treatment to help with nausea. I wasn't aware I was missing a medication last week so really hoping this week will go a bit better than last. We have an action packed weekend ahead filled with the normal weekend commitments of dance, soccer, etc. in addition to a few special events including a charity fashion show, school's monster bash, Spooktaular outing in the time common and Halloween fun with friends! I am really bummed to be potentially missing out on the fun but hopefully I can make it to some festivities.
While in the infusion room, I had nurse Nikki again. I had her last week and she was great! I miss nurse Ann from MGHW but feel very lucky to be cared for by great, caring providers. I truly think it takes a special someone to be able to work in this profession. They have so much compassionate, empathy, and just incredible people. I also saw nurse Diane today. She previously worked at MGHW but recently joined NHW. It was great to see a familiar face. She came over and to say hi and said Ann told her to look for me! 😊
The treatment process was fairly uneventful. I sat towards the front of the infusion room so wasn't sitting next to anyone. My chemo buddy, Mike, was in and out. He left to take calls. I was left with a book, trashy magazines (thanks Zhanna!), random snacks (I came prepared because you never know when beast mode happens! Unlike MGH, NWH does not have endless snacks.) and my good ole phone.
While administering the Adriamycin drug, since it has to be pushed, I got to catch up with Nikki. We talked about family, mostly the kids, and the planner in me asked questions about what's ahead. I asked her when she thought I would lose my hair again. She said as quickly as this weekend. I'm a bit sad about this because I have grown a little attach to the fuzzy duck hair. 😕 Soon enough, it will return and stay! Nikki also told me I could start herceptin 2-3 weeks after this round of chemo. I assumed I couldn't until I started radiation in January. I was also looking forward to having the month of December 'off' from treatment but in typical Lynne fashion as soon as I heard this, the thought of the quicker we start, the quicker we will be done!! Nikki is going to touch base with Dr. Comander on this. I jokingly said I have December off but my calendar is jammed packed with doctors appointments already. It will be nice to not have treatments so I'll focus on that. I will be meeting with Dr. Tillman, radiology oncologist and again with Dr. Comander. I have to also follow up with Dr. Liao, surgeon, on my left arm. I'm still not sure if I will be needing OT. They were delaying this referral because it would have been too much with chemo.
This past week, I met with Dr. McDonough, my new primary care physician, who specializes with cancer patients and survivors. She came highly recommended and didn't disappoint! Before this cancer diagnosis, I truly had a boring medical history. I made this quick realization when I was completing the new patient survey form. I use to fly through them but now I actually have information to include. I also have more doctors than on my hand!!
Dr. Mc.Donough and I spent a lot of time talking about me. It's hard to articulate but I'm constantly scared yet remain forever hopeful. I heard the great news from the pathological results several time and by many doctors but I continue to worry what if something was missed. I probably really need to stop reading blogs of random strangers! They are a source of inspiration, yet plant random seeds in my head of the worse! How can I truly know I'm disease free? I think anyone who has gone through this can relate. I don't think I'll ever be the same. I scan my body everyday to make sure I'm not missing something. I develop a cough, I worry! I know all this is my new reality. It will take me some time. One the flip side, I learn to cherish each and every day more these days. I often stop and pause to look at Carter and Katherine, give them my undivided attention even if it's just for a few mins daily. I did this before but not often enough. I love their ages. They still think we are cool and enjoy spending time with us so I'm going to try to maximize it while I can!
Tuesday, October 25, 2016
Next phase, one down..
The doctor's visit and the first round of the second treatment went as well as it could. I had a lot of anxiety and nerves walking into the infusion room for the first time at NWH. The environment was completely different than at MGH, where the treatment rooms are private. NWH is open concept so you are in a room filled with other patients all receiving care. I wasn't prepared to see the number of people that I became overwhelmed and started to tear up. I was also scared of the reaction to the new drugs. I was full of emotions but the nurses were incredibly kind and helped me through the process. During treatment, I sat next to a lady, Vivian, who shared her story. She said she has metastatic breast cancer and has been going in for herceptin treatment for the past 9 years! I couldn't believe it but it definitely helped put things into perspective.
To help pass time at the treatment, I was bored and took a few pics.
This round of chemo was my toughest yet. I was warned this round of chemo would hit me hard but didn't realize to what extent. I was pretty much out of commission starting Friday afternoon until Tuesday. I was alive but not living. I thought I would be given a grace period of a few days but the drug hit me almost immediately. On Friday morning, I did get to see one of my college girlfriends, Sandra, who was visiting from GA and her sister, Nikki. We had a fun quick visit. That afternoon, I remember feeling pretty tired and crashing hard until part of Monday when my parents came to visit. I remember sitting up and talking to them but would fade in and out. I actually don't have many recollections of those 4 days. I slept a ton. I felt miserable and was very angry. What did I do to deserve this??!
On Tuesday morning, I started feeling slightly better, except I couldn't shake the nausea and developed a cough. I slowly feeling like myself again but I couldn't stop thinking about food for the past few days. All I wanted to do was eat! I was told that it was the steroids that's making me hungry. It's so bad because I would dream about food. Unfortunately when I actually ate, I would feel sick. Fun times!
One of the best news of this past treatment was instead of having to give myself shots, I was able to receive this medication through the use of a pod that stayed on my body for 27 hours after treatment. The pod injected me with a needle and the medication had a timer that went off after the set time. It blinked green and eventually turn yellow and then red so I know when it was safe to take off. The pod is actually nifty and looked like this. Because the chemo treatment depleted me of white blood cells, this medication provided me with a boost of white blood counts.
It is now Tuesday on the week of chemo and I'm feeling human again! I'm no longer crazy hungry or nausea. I'm finally better almost in time for the next treatment! :( The nerves will set as Thursday approaches closer. I'm not looking forward to the next round of treatment but after I get through it, I'll be half way there. I can't wait for all this to behind me and my family. It really has been incredibly hard but I choose to focus on my blessings instead. I continue to be amazed by what a loving, supportive and caring partner I have in Mike. I am forever grateful for my amazing family, close and supportive friends. I feel incredibly blessed to live and am part of a wonderful community and being cared for by amazing doctors and nurses.
It's weird to me when people say I've been a rock star during this journey. Honestly, I feel like anyone in my shoes would do the same. All I'm doing is simply fighting to stay alive. I don't think I'm doing anything exceptional or out of the ordinary. I simply choose to focus on the positives. There will always be people out there who are far worse off than you. This mindset is not easy at times but am quickly reminded when I see these two little rugrats!
To help pass time at the treatment, I was bored and took a few pics.
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| My chemo buddy and rock. Smiling and working hard while I'm receiving treatment. Thank you for adjusting your schedule and for always being there for me and the kids. We love you more than you know it! |
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| Took a selfie to capture what hair I have! I was told after the second treatment, I would lose everything again. :( |
This round of chemo was my toughest yet. I was warned this round of chemo would hit me hard but didn't realize to what extent. I was pretty much out of commission starting Friday afternoon until Tuesday. I was alive but not living. I thought I would be given a grace period of a few days but the drug hit me almost immediately. On Friday morning, I did get to see one of my college girlfriends, Sandra, who was visiting from GA and her sister, Nikki. We had a fun quick visit. That afternoon, I remember feeling pretty tired and crashing hard until part of Monday when my parents came to visit. I remember sitting up and talking to them but would fade in and out. I actually don't have many recollections of those 4 days. I slept a ton. I felt miserable and was very angry. What did I do to deserve this??!
On Tuesday morning, I started feeling slightly better, except I couldn't shake the nausea and developed a cough. I slowly feeling like myself again but I couldn't stop thinking about food for the past few days. All I wanted to do was eat! I was told that it was the steroids that's making me hungry. It's so bad because I would dream about food. Unfortunately when I actually ate, I would feel sick. Fun times!
One of the best news of this past treatment was instead of having to give myself shots, I was able to receive this medication through the use of a pod that stayed on my body for 27 hours after treatment. The pod injected me with a needle and the medication had a timer that went off after the set time. It blinked green and eventually turn yellow and then red so I know when it was safe to take off. The pod is actually nifty and looked like this. Because the chemo treatment depleted me of white blood cells, this medication provided me with a boost of white blood counts.
It is now Tuesday on the week of chemo and I'm feeling human again! I'm no longer crazy hungry or nausea. I'm finally better almost in time for the next treatment! :( The nerves will set as Thursday approaches closer. I'm not looking forward to the next round of treatment but after I get through it, I'll be half way there. I can't wait for all this to behind me and my family. It really has been incredibly hard but I choose to focus on my blessings instead. I continue to be amazed by what a loving, supportive and caring partner I have in Mike. I am forever grateful for my amazing family, close and supportive friends. I feel incredibly blessed to live and am part of a wonderful community and being cared for by amazing doctors and nurses.
It's weird to me when people say I've been a rock star during this journey. Honestly, I feel like anyone in my shoes would do the same. All I'm doing is simply fighting to stay alive. I don't think I'm doing anything exceptional or out of the ordinary. I simply choose to focus on the positives. There will always be people out there who are far worse off than you. This mindset is not easy at times but am quickly reminded when I see these two little rugrats!
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| Always a silly face edition! |
Thursday, October 13, 2016
Insomnia
Insomnia is the pits! But insomnia combined with nerves may be 10x worse. I'm laying here wide awake when the rest of the house is quiet as a mouse. I should be sleeping but I can't. The harder I try, the more awake and alert I become. It's 3:30 am and infomercials are on. I decided to blog instead of being tempted in buying something that doesn't work. So here goes my random rant. 😊
Well the next big day is here. I've been a ball of nerves. Information is power and key but I'm simply scared. I have heard so much about what is called AC drugs. I have heard they have a cumulative effect so it will become more taxing on my body as the weeks progress. I have been warned, during this treatment, I will have to give myself shots. I freaking hate needles! And supposedly the portion of the AC drug is red in color so I'll be peeing what appears to be blood. Can't wait! Gross!! To my family and friends, I apologize in advance for my behavior during the next few weeks. Buckle up, it should be interesting!
The journey so far, I feel like I've been in drive mode. When we started with the first round of chemo, I jumped right in and didn't have much time to think or really process the information. Perhaps it was a blessing! I was nervous about surgery as well but it didn't dawn on me how invasive or how my body would change. I'm still getting use to these new things they call boobs! I know this all sounds crazy but perhaps this has been how I have been coping. This round of chemo has been different. I have had a lot of idle time, recovering from surgery that the mind wonders.
I'm trying really hard to focus on the positives. I'm beyond blessed to have the results of the first round of chemo. Some people are not nearly as lucky so instead of complaining or being scared I'm trying to focus on that! This next round will help knock out what is left. If I do get sick, it simply means the medicine is working. Some people would love such a response. I have been reading this one other lady's blog. She has metastatic breast cancer. She said that because the chemo no longer works, she has no side effects. Whenever I think I'm struggling, I read her blog and she really help puts things into perspective. So to this lady who I have not met, thank you for blogging and sharing your journey. I admire your strength and courage. You are beyond amazing and inspirational!
It's crappy luck that I got cancer. No one deserves cancer! I never feel sorry for myself. My heart often breaks for the kids but they are also the reason why I can't mope around and feel sorry. They are the engine to what makes this body run. I choose to focus on the positives and fight! Cancer has taught me a lot about myself and will continue to shape who I am. It has also taught me that it is important to live life with no regret and to live each day like it could be my last. It has taught me to treat my body well. It has showed me my many blessings and has showed me what true friendship looks like. The journey isn't over but I no longer look at the six little letter word, cancer, as pure evil. I associate it more with HOPE. I remain forever hopefully all the time, not just for me but for everyone. Cancer has taught me how to have grace, and empathy for all people. 'Everyone you meet is fighting a battle you know nothing about. Be kind.ALWAYS!'
We have best prepared the kids for this next round. We talked at dinner about mommy having to go in for treatment and that I may feel tired. Tonight while tucking Carter in bed, he asked can you get cancer twice? I was honest with him and pray every day that I'm truly cancer free.
Real tv is about to come back on so I'll watch a little bit and hopefully get a little shut eye before the kids get up. Thanks to all the family and friends who have reached out to show your love and support. I'm okay. Chugging along. The quicker I get started, hopefully the quicker it will be over. After today, I will be a quarter done with this round. I can do it! 😊
Well the next big day is here. I've been a ball of nerves. Information is power and key but I'm simply scared. I have heard so much about what is called AC drugs. I have heard they have a cumulative effect so it will become more taxing on my body as the weeks progress. I have been warned, during this treatment, I will have to give myself shots. I freaking hate needles! And supposedly the portion of the AC drug is red in color so I'll be peeing what appears to be blood. Can't wait! Gross!! To my family and friends, I apologize in advance for my behavior during the next few weeks. Buckle up, it should be interesting!
The journey so far, I feel like I've been in drive mode. When we started with the first round of chemo, I jumped right in and didn't have much time to think or really process the information. Perhaps it was a blessing! I was nervous about surgery as well but it didn't dawn on me how invasive or how my body would change. I'm still getting use to these new things they call boobs! I know this all sounds crazy but perhaps this has been how I have been coping. This round of chemo has been different. I have had a lot of idle time, recovering from surgery that the mind wonders.
I'm trying really hard to focus on the positives. I'm beyond blessed to have the results of the first round of chemo. Some people are not nearly as lucky so instead of complaining or being scared I'm trying to focus on that! This next round will help knock out what is left. If I do get sick, it simply means the medicine is working. Some people would love such a response. I have been reading this one other lady's blog. She has metastatic breast cancer. She said that because the chemo no longer works, she has no side effects. Whenever I think I'm struggling, I read her blog and she really help puts things into perspective. So to this lady who I have not met, thank you for blogging and sharing your journey. I admire your strength and courage. You are beyond amazing and inspirational!
It's crappy luck that I got cancer. No one deserves cancer! I never feel sorry for myself. My heart often breaks for the kids but they are also the reason why I can't mope around and feel sorry. They are the engine to what makes this body run. I choose to focus on the positives and fight! Cancer has taught me a lot about myself and will continue to shape who I am. It has also taught me that it is important to live life with no regret and to live each day like it could be my last. It has taught me to treat my body well. It has showed me my many blessings and has showed me what true friendship looks like. The journey isn't over but I no longer look at the six little letter word, cancer, as pure evil. I associate it more with HOPE. I remain forever hopefully all the time, not just for me but for everyone. Cancer has taught me how to have grace, and empathy for all people. 'Everyone you meet is fighting a battle you know nothing about. Be kind.ALWAYS!'
We have best prepared the kids for this next round. We talked at dinner about mommy having to go in for treatment and that I may feel tired. Tonight while tucking Carter in bed, he asked can you get cancer twice? I was honest with him and pray every day that I'm truly cancer free.
Real tv is about to come back on so I'll watch a little bit and hopefully get a little shut eye before the kids get up. Thanks to all the family and friends who have reached out to show your love and support. I'm okay. Chugging along. The quicker I get started, hopefully the quicker it will be over. After today, I will be a quarter done with this round. I can do it! 😊
Tuesday, October 11, 2016
Serendipity
The second round of chemo will start this week and I'm once again restless. So many thoughts are lurking in my head that I can't quite shut down. I often wonder if I'm clinically cancer free, is this next round of chemo and radiation necessary? What is the chemo targeting? I'm mostly scared as I will be receiving treatment of new more toxic drugs at a new hospital with new nurses. The only familiar face will be my medical oncologist. I decided I to follow Dr. Comander to her new practice at NWH.
As much as I have tried to beat the planner out of me, I'm a mom and a planner! The unknown of how I'll feel at this next go has me freaked out. I'm mostly scared that I'll be so sick that I can't care for the kids. I'm holding onto hope that somehow someway I will make it through the next 8 weeks as quickly as the first 12 weeks.
It has been 4 weeks since my surgery. I'm pretty much back to my ole self with the exception of limited range to my left arm, where the lymph nodes where removed. I have been doing strengthening exercises and have made progress. It unfortunately isn't quite there yet and therefore haven't received the clearance to drive. I am hoping the arm improves without OT. I have enough doctor's appointments that I don't need more.
I'm incredibly thankful for my parents during this whole ordeal, especially during the past 4 weeks while I'm recovering. They have been so incredible with making sure the fridge is full, we have prepared meals, the house is tidy and helping with the kids. Mom and dad, we hope you realize how much we appreciate you and your selflessness! From the bottom of our hearts, THANK YOU!
My last chemo treatment was August 18th. It will be roughly 2 months since I will receive treatment on October 13th. The past 2 months flew! I love that I'm feeling normal and like me again (well maybe not the chest area! I'm still getting use to these things they call boobs!) I continue to be amazed with the hair regrowth. It has come back and I kinda like it! Maybe I'll rock the pixie haircut for awhile after my hair grows out and stays (haha...not like it's a choice but I will have to for awhile until the hair grows back). I will be sad to see if go again in a few days but know it will return again soon enough.
I have been so overwhelmed with all the medical bills. We decided back in July to explore Mike's insurance. My policy carried a steep co-payment at every doctor's visit of $90 since it's a tiered system. Mike's was more reasonable at $25 across the board. My policy also had a large deductible for labs, scans, etc., which Mike's did not. We carried both insurances for a bit just to make sure. We finally dropped my insurance and thought Mike's policy was better. Unfortunately we received a recent bill for a whopping 6k for the surgery. In the whole scheme of things, this is a very small percentage of the actual bill but came as a surprise since we didn't anticipate it. Mike's policy has what is referred to as coinsurance and we are responsible for this portion first along with the deductible. I was prepared for the deductible, I wasn't familiar with the coinsurance. Just prior to this bill, I just got through squaring away lab and scan bills from my old policy of 1k. As much as all this sucks, I'm trying to focus on the positive that soon enough, I'll have my health back and can work to pay it off. I feel very fortunate but often feel overwhelmed during these quiet times.
Shifting gears to something a bit more joyful. This past weekend...something a bit serendipitous happened. We went to The Local in Wayland with some friends. We have never been to this restaurant prior or really ventured to Wayland. As we parked, we noticed a car reverse. I assumed the car was trying to pull into the spot next to us. To our surprise, it was nurse Ann from MGH!! She saw us and reversed to say hi! I was so happy to see her as I didn't get to see her on my last day of treatment. We caught up quickly and I finally had the courage to ask her for her contact. I didn't ever really have the chance or did I think it was appropriate while I was receiving treatment. It truly was meant to be because Ann said she's never area there either and just happened to be there today. Thanks Ann for stopping to say hi!! You are stuck with me. 😉
As much as I have tried to beat the planner out of me, I'm a mom and a planner! The unknown of how I'll feel at this next go has me freaked out. I'm mostly scared that I'll be so sick that I can't care for the kids. I'm holding onto hope that somehow someway I will make it through the next 8 weeks as quickly as the first 12 weeks.
It has been 4 weeks since my surgery. I'm pretty much back to my ole self with the exception of limited range to my left arm, where the lymph nodes where removed. I have been doing strengthening exercises and have made progress. It unfortunately isn't quite there yet and therefore haven't received the clearance to drive. I am hoping the arm improves without OT. I have enough doctor's appointments that I don't need more.
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| The kids helping me with strengthening arm exercises. Katherine gets excited when she's able to reach as far up on the wall as me. Carter is the time keeper. I'm smiling here because the right arm is a breeze! |
My last chemo treatment was August 18th. It will be roughly 2 months since I will receive treatment on October 13th. The past 2 months flew! I love that I'm feeling normal and like me again (well maybe not the chest area! I'm still getting use to these things they call boobs!) I continue to be amazed with the hair regrowth. It has come back and I kinda like it! Maybe I'll rock the pixie haircut for awhile after my hair grows out and stays (haha...not like it's a choice but I will have to for awhile until the hair grows back). I will be sad to see if go again in a few days but know it will return again soon enough.
I have been so overwhelmed with all the medical bills. We decided back in July to explore Mike's insurance. My policy carried a steep co-payment at every doctor's visit of $90 since it's a tiered system. Mike's was more reasonable at $25 across the board. My policy also had a large deductible for labs, scans, etc., which Mike's did not. We carried both insurances for a bit just to make sure. We finally dropped my insurance and thought Mike's policy was better. Unfortunately we received a recent bill for a whopping 6k for the surgery. In the whole scheme of things, this is a very small percentage of the actual bill but came as a surprise since we didn't anticipate it. Mike's policy has what is referred to as coinsurance and we are responsible for this portion first along with the deductible. I was prepared for the deductible, I wasn't familiar with the coinsurance. Just prior to this bill, I just got through squaring away lab and scan bills from my old policy of 1k. As much as all this sucks, I'm trying to focus on the positive that soon enough, I'll have my health back and can work to pay it off. I feel very fortunate but often feel overwhelmed during these quiet times.
Shifting gears to something a bit more joyful. This past weekend...something a bit serendipitous happened. We went to The Local in Wayland with some friends. We have never been to this restaurant prior or really ventured to Wayland. As we parked, we noticed a car reverse. I assumed the car was trying to pull into the spot next to us. To our surprise, it was nurse Ann from MGH!! She saw us and reversed to say hi! I was so happy to see her as I didn't get to see her on my last day of treatment. We caught up quickly and I finally had the courage to ask her for her contact. I didn't ever really have the chance or did I think it was appropriate while I was receiving treatment. It truly was meant to be because Ann said she's never area there either and just happened to be there today. Thanks Ann for stopping to say hi!! You are stuck with me. 😉
Thursday, September 29, 2016
Post surgery--Clinically Cancer Free!
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...
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...
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!
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