At the very beginning, when first starting this blog, I said that if I didn't post that it was because my family and I were busy loving on each other and making memories. And in the last 9 months since the last blog post, by a dear friend - that's exactly what we have done. But I think it's only fair to start where we left off.. I understand that it will be lengthy, however I don't think leaving anything out is fair to the journey, or to those who truly want to know. And it make take a few blog updates. So again I will say, that if the truth, and reality of what this disease brings is not something you care to know, please don't read any more.
There is something that I want you to keep in the back of your mind as you continue reading. The question "Then what?", because it wasn't ever a question I thought I would ask myself throughout this process.
I have been thinking for MONTHS now how I would start updating again - and catching up from where we left off. I never knew when it would be, just that I would know when the time was right. Learning that someone else, a young woman, who I have never met but imagine is incredible, has been recently diagnosed with breast cancer sometimes will strike your cord. Don't get me wrong - I have heard of several women being stricken with this awful disease since last updating here, but sometimes it's just different.
Please remember as you read, that I was on very high pain medicine during this surgery and during my stay in the hospital. I am recalling it the best that I can and how I understood the situation at the time being so medicated.
The latissimus dorsi flap procedure that I explained in an early post, was not at all how I imagined. I thought I would stay in the hospital 3 days, I was there 4. I had already had my chest cut open once, so to say that I was nervous wouldn't be a fair statement. I had a pretty good idea of what it would feel like, or so I thought. When I woke up I remember being in a room with a fan on high blowing right on me, then I realized I felt like I must have been under a heat lamp! Then I quickly realized that I was not going to be moving anywhere anytime soon. I was hooked up to suction on the wall, from 6 drains. 3 on each side. And when I managed to become coherent enough to turn and look, I would see that they were full of blood. There are vague memories from those 4 days in the hospital. I remember having a few visitors from Catholic Charities. And my friends coming and seeing me. My family coming and seeing me. I remember being in pain. I remember taking a picture of my chest with my phone so I could see it. And leaning forward and making my brother take a picture of my back so that I could see that too. And having to lift myself off the bed so that I could go to the bathroom in a bed pan. Which happened a lot more frequently than I desired because I was hooked up to IV fluids. And my dad staying the night with me. And my brother staying the night with me. And insisting that my mom go home and sleep in her own bed. :) I remember walking laps around the unit with my brother so that I could go home. I think one time I did 9... which for some reason I remember being pretty proud of.
I remember at one point thinking "What in the hell did I do? Why did I think that getting reconstruction was even a remotely good idea? I could have easily gone my whole life without breasts"... and then just as fast as it all began, I got to go home. And while there is no comfort like that of your home, there is also no comfort like the 24 hour care that the nurses provide. I got to go home on my 26th birthday which was never how I envisioned spending my golden birthday, but I was happy none the less.
I had managed 4 drains before from the mastectomy. Sure it wasn't easy but I had a tank top that had pockets for each drain and 2 on each side really isn't that terrible. But SIX?! 6?! Plus a pain pump on each side that would come out in a few days. 8 tubes. And of course the only thing I wanted to do was take a hot bath and relax. Which is absolutely not allowed when you have drains. I think this surgery probably humbled me to my core.
I used a shower chair because standing up with 4 tubes coming out of each side of your body was simply not an option. When I had my mastectomy I had a beaded necklace that I attached them to with safety pins, however the weight of more and the fact that they didn't move easily and pulled on my sides required me to sit down. So a lot of days I would sit in the shower chair, underneath the hottest water I could stand, and try and relax. Sleeping was a whole different story. As you know I slept in a recliner for almost 8 weeks after my mastectomy, and I knew there was absolutely no way that I could do that again, especially with more accessories to carry around. So we ordered a hospital bed before I came home and had it delivered and set up. Being able to raise my legs and lower the bed so I could get out of it easily was absolutely worth the money. I don't think I would have been able to heal as well as I did if I had not had it. I had it for a little over a month.
Like with the mastectomy I had fills to inflate the tissue expanders. And it wasn't any more fun the second round than it was the first. I think because I was choosing to have larger breast than I initially had it made it harder and a little more painful. Now that I have perspective, I know why I chose reconstruction and I do not regret it but more on that later.
My sweet brother was not yet employed so he happily drove me all over for doctors appointments. I was still getting herceptin every 3 weeks, getting fills weekly after my 2 week post op mark and getting drains out as their output went down. We were decently busy :).
So like fertility, chemo, my double mastectomy, and radiation somehow I made it through. There were tough days, like when I stopped taking pain pills, and wasn't particularly aware of how much I was taking and that it would be good to ''ween'' myself off them. I didn't. And I had the worst body aches I've ever had in my entire life. That's what they call withdraw, and its not a joke. My mom realized about halfway through the withdraw process what I was probably experiencing and it didn't make sense to start taking medicine again, so I pushed through.
I was off of work for 8 weeks total and I honestly needed every bit of that time. When you have radiation it takes a long time for your body to rid itself of it so I was having basically back to back treatment, whether that was surgery or active chemo or radiation for almost a solid 12 months at this point. I was tired....
All of this didn't happen without a hiccup though. Yes withdraw from pain medicine when you don't realize that is a risk isn't fun. But neither is getting fluid on your breast. For some reason my left side collected more fluid after taking my drains out - and I was pretty adamant about not going back in to have another drain put in. My own doctor had to have surgery - so she was out of the office and I had to see another doctor. I didn't have a great experience and realized how much you truly develop a relationship with your physicians. In the end I ended up having 120 cc of fluid drained off my left side and I didn't have to have a drain put back in. I continued my fills and my doctor and nurse were extremely supportive and did not ever do anything to put me or my reconstruction in jeopardy.
So I made it through the second surgery... It wasn't easy. But I did it with the help of my family and friends. This was step 5 out of 6 for the treatment and reconstruction process... But.. Then what?
xoxo,
Mary Ann
There is something that I want you to keep in the back of your mind as you continue reading. The question "Then what?", because it wasn't ever a question I thought I would ask myself throughout this process.
I have been thinking for MONTHS now how I would start updating again - and catching up from where we left off. I never knew when it would be, just that I would know when the time was right. Learning that someone else, a young woman, who I have never met but imagine is incredible, has been recently diagnosed with breast cancer sometimes will strike your cord. Don't get me wrong - I have heard of several women being stricken with this awful disease since last updating here, but sometimes it's just different.
Please remember as you read, that I was on very high pain medicine during this surgery and during my stay in the hospital. I am recalling it the best that I can and how I understood the situation at the time being so medicated.
The latissimus dorsi flap procedure that I explained in an early post, was not at all how I imagined. I thought I would stay in the hospital 3 days, I was there 4. I had already had my chest cut open once, so to say that I was nervous wouldn't be a fair statement. I had a pretty good idea of what it would feel like, or so I thought. When I woke up I remember being in a room with a fan on high blowing right on me, then I realized I felt like I must have been under a heat lamp! Then I quickly realized that I was not going to be moving anywhere anytime soon. I was hooked up to suction on the wall, from 6 drains. 3 on each side. And when I managed to become coherent enough to turn and look, I would see that they were full of blood. There are vague memories from those 4 days in the hospital. I remember having a few visitors from Catholic Charities. And my friends coming and seeing me. My family coming and seeing me. I remember being in pain. I remember taking a picture of my chest with my phone so I could see it. And leaning forward and making my brother take a picture of my back so that I could see that too. And having to lift myself off the bed so that I could go to the bathroom in a bed pan. Which happened a lot more frequently than I desired because I was hooked up to IV fluids. And my dad staying the night with me. And my brother staying the night with me. And insisting that my mom go home and sleep in her own bed. :) I remember walking laps around the unit with my brother so that I could go home. I think one time I did 9... which for some reason I remember being pretty proud of.
I remember at one point thinking "What in the hell did I do? Why did I think that getting reconstruction was even a remotely good idea? I could have easily gone my whole life without breasts"... and then just as fast as it all began, I got to go home. And while there is no comfort like that of your home, there is also no comfort like the 24 hour care that the nurses provide. I got to go home on my 26th birthday which was never how I envisioned spending my golden birthday, but I was happy none the less.
I had managed 4 drains before from the mastectomy. Sure it wasn't easy but I had a tank top that had pockets for each drain and 2 on each side really isn't that terrible. But SIX?! 6?! Plus a pain pump on each side that would come out in a few days. 8 tubes. And of course the only thing I wanted to do was take a hot bath and relax. Which is absolutely not allowed when you have drains. I think this surgery probably humbled me to my core.
I used a shower chair because standing up with 4 tubes coming out of each side of your body was simply not an option. When I had my mastectomy I had a beaded necklace that I attached them to with safety pins, however the weight of more and the fact that they didn't move easily and pulled on my sides required me to sit down. So a lot of days I would sit in the shower chair, underneath the hottest water I could stand, and try and relax. Sleeping was a whole different story. As you know I slept in a recliner for almost 8 weeks after my mastectomy, and I knew there was absolutely no way that I could do that again, especially with more accessories to carry around. So we ordered a hospital bed before I came home and had it delivered and set up. Being able to raise my legs and lower the bed so I could get out of it easily was absolutely worth the money. I don't think I would have been able to heal as well as I did if I had not had it. I had it for a little over a month.
Like with the mastectomy I had fills to inflate the tissue expanders. And it wasn't any more fun the second round than it was the first. I think because I was choosing to have larger breast than I initially had it made it harder and a little more painful. Now that I have perspective, I know why I chose reconstruction and I do not regret it but more on that later.
My sweet brother was not yet employed so he happily drove me all over for doctors appointments. I was still getting herceptin every 3 weeks, getting fills weekly after my 2 week post op mark and getting drains out as their output went down. We were decently busy :).
So like fertility, chemo, my double mastectomy, and radiation somehow I made it through. There were tough days, like when I stopped taking pain pills, and wasn't particularly aware of how much I was taking and that it would be good to ''ween'' myself off them. I didn't. And I had the worst body aches I've ever had in my entire life. That's what they call withdraw, and its not a joke. My mom realized about halfway through the withdraw process what I was probably experiencing and it didn't make sense to start taking medicine again, so I pushed through.
I was off of work for 8 weeks total and I honestly needed every bit of that time. When you have radiation it takes a long time for your body to rid itself of it so I was having basically back to back treatment, whether that was surgery or active chemo or radiation for almost a solid 12 months at this point. I was tired....
All of this didn't happen without a hiccup though. Yes withdraw from pain medicine when you don't realize that is a risk isn't fun. But neither is getting fluid on your breast. For some reason my left side collected more fluid after taking my drains out - and I was pretty adamant about not going back in to have another drain put in. My own doctor had to have surgery - so she was out of the office and I had to see another doctor. I didn't have a great experience and realized how much you truly develop a relationship with your physicians. In the end I ended up having 120 cc of fluid drained off my left side and I didn't have to have a drain put back in. I continued my fills and my doctor and nurse were extremely supportive and did not ever do anything to put me or my reconstruction in jeopardy.
So I made it through the second surgery... It wasn't easy. But I did it with the help of my family and friends. This was step 5 out of 6 for the treatment and reconstruction process... But.. Then what?
xoxo,
Mary Ann