In this post here, I mentioned I was three weeks post-op, drain free and ready for my first fill. Some of you might be wondering what a “fill” is and what’s a “tissue expander”?
Women like myself who wish to reconstruct their breasts after a mastectomy but who do not have enough body fat to use their own tissue usually use one of two methods.
The first being a newer technique called a “one-step”. The "one step" requires the least amount of surgeries and downtime as implants are placed immediately following the mastectomy.
The second technique is a two-phase approach using tissue expanders later exchanged for implants. This is the reconstruction technique that was right for me.
After my bilateral mastectomy, a tissue expander was placed on each side behind the chest muscle. My surgeon utilized support matrix called alloderm. Alloderm is donated tissue that was stitched to my pectoral muscle to help support the expander and eventual implant.
The tissue expanders are filled with saline over time to slowly expand the muscle and skin to accommodate the implants. I’m pretty tiny so my surgeon only placed 50ccs of saline in each expander at the time of my initial surgery. Most women get more than 50ccs. Since I wasn’t larger chested to begin with and because I had my areola and nipple removed, I had a lot less skin remaining than women who had larger breasts or who had a Nipple Sparing Mastectomy.
When it was time for my long awaited first “fill”, I asked how much we were going to place in the expanders. The surgeon said it’s different for everyone but fill amounts can be anywhere from 30 to 150ccs. It depends how much the patient can tolerate.
I was feeling great, and a bit bold, so I asked for 100ccs. My surgeon's PA inspected my incisions and examined my skin. She then agreed to the 100ccs in each expander as long as I was feeling okay during the fill.
She swabbed the entire breast area with alcohol that stained my skin blue. This easily removable dye is added to visually aid and confirm that everything was sterilized. She used a little magnetic tool to confirm the location of the port, and marked me with an X on each side where the needle from the syringe would go in. It's critical not to puncture the expander.
She started on the left side with a syringe full of 50ccs of saline. The needle went in (I looked away) and she placed 50ccs in the tissue expander. I didn’t feel a thing and was doing great. She then paced another 50ccs for a total fill of 100ccs.
Now for the right side. She placed the needle in and OUCH! That hurt! It caught me off guard as I didn’t feel anything on my left side. She said it’s actually a good sign that I have any feeling at all. And that it’s not uncommon for feeling on one side and not the other but that it wasn’t out of the question that I may regain feeling in both breasts.
The fill of 100ccs on the right side didn’t hurt, but I could feel it going in. It was a very strange sensation. Even more so was the sight of such a large change in the size of the breast mound in just a matter of minutes. I couldn't help but giggle at that. If only puberty had been so easy.
My remaining fills went the exact same way. I never felt anything on the left and I always felt that darn needle going in on the right. I tried to remember that it was good though because it meant that I had feeling in that breast. I can’t complain about that!
My fills were pretty uneventful with the exception of one, my third fill that filled my tissue expanders to their suggested fill volume of 350ccs. I did take some ibuprofen that night as I was a bit sore. Nothing extreme and easily controlled by the little bit of ibuprofen I took. I really feel the botox mentioned here greatly assisted in my expansion process.
For anyone going through this, know that tissues expanders do not look like natural breasts. It's more shaped like a football and the saline will collect in areas of least resistance. They are certainly odd looking; but in all honesty, the look of them really didn't bother me. I knew it was temporary. The feel of them was much more difficult to cope with. They are so hard and expand laterally right underneath the armpit. That was annoying to say the least. For me however, they were not necessarily painful, but certainly uncomfortable.
I had a total fill of 460ccs when I was done. Here’s how my fills progressed.
Now 460ccs on me would look very different than 460ccs on a woman larger or smaller than me. Sizing really depends on your height, weight and rib cage. I’m going to talk more about that in a separate post, but this was my expansion journey. Now that my fills were done, all I had to do was wait to exchange the tissues expanders out for implants.
Monday, October 17, 2011
In this post here, I mentioned I was three weeks post-op, drain free and ready for my first fill. Some of you might be wondering what a “fill” is and what’s a “tissue expander”?
Friday, September 16, 2011
After my double mastectomy, I left the hospital with two drains, one under each arm. The management of these two drains has been the worst part of this whole procedure. You wouldn’t think two little drains could be so uncomfortable, limiting and down right annoying but they were.
The type of drains I had are called Jackson-Pratt or JP Drains. The drains were literally stitched into my skin. Every time I moved my arm the stitch would pull. It was not pleasant.
I couldn’t wear shirts with sleeves very well so I was living in Hanes men’s tank tops. They were large enough that I could step into them so I wouldn’t have to raise my hands over my head. These tanks were a great minimal investment. They were very comfortable and cheap so I didn’t care if they got stretched out, bled on or anything else that could damage them.
I couldn’t have the tube of the drain on the inside of the tank top because it tugged at the stitch. So I had to have them on the outside. I simply pinned the drain to the bottom of the tank. It worked perfectly as the arm cut out of the tank was low enough that it didn’t rub against the drain tube or stitching.
I did have to be really careful though as one drain got caught on a chair. Ouch! And apparently I’m not a quick study as the same drain got caught on a doorknob about a week later. Thankfully neither incident resulted in the drain being pulled out. Well done stitches! Well done!
I found this handy little drain belt after the fact of course but I really like those tanks and continue to wear them every day.
Showering With Drains
My plastic surgeon said to wait 48 hours, but that I could shower with the drains after that. I hear time and time again from other women that their surgeon said no showering with drains. Each seem to have their own guidelines.
I was able to lean over the sink and wash my hair for the first week or so. During that time I also sat in the tub to bathe but never submersed my upper half. I just used a washcloth sort of like a sponge bath.
Now this sounds crazy and I'm sure it looked just as crazy as it sounds, but when I sat in the tub, I pulled my hair in a low ponytail and took two long hair pins and secured each drain to the pony tail. That's how I managed the drains while in the tub.
By the second week with drains, I decided to follow my surgeon’s guidance and showered with the drains. I took a cloth white ribbon and tied it around my neck. I then safety pinned the drains to the ribbon. It worked like a charm! Again, I looked completely ridiculous but felt like a new woman after that first shower since the surgery!
A week before my surgery and for a couple of months after, I only used antibacterial Dial soap. I did shampoo my hair in the shower but only used conditioner if I washed my hair over the sink. I was afraid that the conditioner may possibly cause an infection if it got to my incisions.
Time Frame With Drains
Most people get their drains out in 5 to 10 days but mine were in for three long weeks.
No matter what I did or as little activity that I had, I simply couldn’t get the output down to less than 30ccs in a 24 hour period which was required for two consecutive days before they could be removed.
The last week I never had an output more than 32ccs over a 24 hour period of time. I was just hovering around 30. Seriously, I can not tell you how many days 1 tiny cc of fluid dashed my hopes of getting these darn things removed. But I was taking no chances of having the drains removed too soon and risk my reconstruction due to an infection or complication such as seroma.
It was decided at the three week mark however that the risk of infection now outweighed the benefit of the drains. So the surgeon decided to remove the drains. Hallelujah!!
The surgeon’s PA both removed the drains and completed my first fill at the same appointment. They felt giving the fluid less room to collect by beginning to fill my tissue expander was a good idea and it worked. I never had any complication even though I was still outputting around 30 to 32ccs a day.
My breast surgeon mentioned that sometimes the drains themselves are the culprit for the continued drainage. I’m not sure what caused it but I was so grateful to be able to move forward without these drains.
I shouldn’t really complain. There are plenty of women who have had it much worse. But I think we would all agree; drains are evil. A necessary one but evil nonetheless.
Thursday, September 15, 2011
Wednesday, September 14, 2011
While exploring options for my prophylactic bilateral mastectomy, both my breast surgeon and plastic surgeon asked me if I wanted a Nipple Sparing Mastectomy. There are different types of mastectomies performed depending on the situation. My situation allowed me to choose if I wanted a Nipple Sparing Mastectomy that would enable me to keep my nipples.
I already knew going in that I didn’t. I mean, yes of course I “wanted” them. Who would choose to remove their nipples if they didn’t have to right? Well I guess I did.
The risk of having breast cancer in the nipple is quite low but it does occur. So I wanted to remove as much tissue as possible that may increase my already high risk of breast cancer. Keeping them wasn’t an option for me. I wanted to know I did everything possible to eliminate my chances of this disease that has devastated my family.
I chose to have a bilateral “simple” or “total” mastectomy that would remove the entire breast including the nipple.
The decision wasn’t easy. The loss of feeling and sensation of natural breasts and nipples is something I knew I would struggle with. I was and still am sad at the loss of them.
But in all honesty, that loss doesn’t compare to the happiness and relief I feel about reducing my chances of breast cancer to single digits. I had such a huge and heavy worry erased in a matter of hours thanks to this procedure.
And again, my procedure was prophylactic. I was lucky that I didn’t have any lymph nodes or muscle removed. Other women like my Mom and two aunts weren’t so lucky. All three sisters had a diagnosis and were battling Breast Cancer. My procedure was done to prevent it.
There are so many facets of this process that are deeply personal and individual. What was right for me would not be right for someone else. I’ve met plenty of women who kept their nipples and they don’t lose any sleep over it.
Choosing not to keep my nipples was the right decision for me.
I don’t regret my decision for one minute. Not one.
Tuesday, September 13, 2011
I’m excited to share my journey with you as I recover from my Prophylactic Bilateral Mastectomy (PBM) and immediate reconstruction in June. I’ve updated a little bit here and there but have been working on a few posts to provide more information over the next few days.
I’ve had some women contact me who are either recovering from or preparing for a PMB of their own. I’m really happy that by sharing my story, I may help someone else on their own journey. I certainly know it helped me when I was getting ready for this life changing procedure.
So coming up, I plan to share with you my experience of the following.
Drains: Drains are evil.
Expansion: The process of using Tissue Expanders to reconstruct my breasts.
Size Matters: From A to B. Or maybe C.
Thursday, July 21, 2011
Wednesday, July 20, 2011
To anyone who finds my blog because of the journey I'm sharing of my Prophylactic Bilateral Mastectomy, I wanted to share what I believe to be the reason I'm experiencing a lot less pain than what I hear about from others.
I know everyone tolerates pain differently. Prior to this surgery, I would have never considered myself of having a high tolerance for pain, but I am doing great!
My plastic surgeon used Botox at the time of my immediate reconstruction following my bilateral mastectomy. I was out of the hospital less then 24hours after my surgery and couldn't believe how little pain I was in. Uncomfortable? Yes. But not a lot of pain.
I took prescribed painkillers for two days and that was it. I really haven't needed anything at all. Not even for my first fill of the tissues expanders (TE). I received 100ccs in each TE and needed no pain medication at all. I've read so many stories of women receiving a lot less leaving them in extreme pain and discomfort.
I don't know if the rest of my journey will remain as pain free as I am now but I wanted to share this as something to explore with your surgeon if you are having a mastectomy. My hope is that it will save a lot of women from unnecessary pain.
Here is a link that explains the use of the botox in breast reconstruction and a trial of women following their mastectomies. I sure hope this can help others too!!
Friday, July 8, 2011
I'm 17 days post op and doing fabulous! :) I'm so happy. The surgery went well and less than 24 hours later I was back home. I was on some pain medication for a couple of days but really didn't need anything after that.
I don't consider myself to have a high tolerance for pain so I'm very surprised to how well I'm doing. Now don't get me wrong. I am uncomfortable, sleep deprived, limited movement in my arms and have pain from time to time, but overall I'm doing really well.
The first few days were a challenge but I feel good now. I can not wait however to get these darn drains out of me! I have two tubes coming out on my sides below my arms emptying into a little collection device. They are stitched into my skin and that is uncomfortable and at times painful.
I guess most people get the drains out in about 5-10 days but here I am 17 days later still attached. They are awful and I can't wait to see them go. However, the surgeon is looking for consistent days of less than 30cc drainage and I have been hovering around 30-32 for several days now. They don't want to remove them too soon or I could develop seroma which increases my chances of infection which places my reconstruction in jeopardy.
They said however at the three week mark they start to look at the risk versus benefit of drains. There is more of a risk of infection if left in too long. So I am set to go in next Tuesday to remove the drains regardless if I'm still hovering around 30 and I will start my first fill. I'm going to talk more about my reconstruction later.
For now I wanted to give you a quick update and more importantly thank you for all of your support. I have no doubt that the prayers I received and continue to receive are helping me tremendously.
Thank you so much!!!
Monday, June 20, 2011
Tomorrow is the big day! In less than 24 hours I will dramatically reduce my chance of getting breast cancer.
I am ready!
I will update everyone as soon as I can. Thank you all so much for your support!
Love & Hugs, b
Friday, June 17, 2011
Thursday, June 16, 2011
Okie dokie, I'm going to be completely shameless and ask you all to pray for me. And ask everyone you know to pray for me. And ask everyone they know to pray for me. Okay, just kidding, well sort of.
My upcoming surgery has me thinking a lot about my Mom. I keep thinking how I wish my Mom was the one going in for a surgery that would save her from a battle with cancer that ultimately took her life. But she's not. She's in heaven now.
When she was battling cancer, I would have given anything to trade places with her. Anything. But I couldn't. I stood completely helpless. Completely powerless. The only thing left to do was pray.
No one believed in the power of prayer more than my Mom.
And I know with certainty in her final moments, that she felt the prayers that were pouring in for her. Countless churches, homes, communities, prayer groups, friends, relatives and strangers were all praying for my Mom. I will forever be grateful at the outpouring of love and support for my Mom.
I too believe in the power of prayer. Which is the reason for this post.
I ask that you please pray for a successful surgery for me with no complications and a quick recovery. Please pray for the surgeons, the operating staff, the reconstruction team, the anesthesiologist, any and everyone you can think of involved in this procedure.
Please pray one silent prayer or Tweet it, Facebook it, Blog it to ask others to do the same. Whatever you are willing to do, I would really appreciate it.
I feel a little silly asking for prayer for myself but to be completely honest, I'm scared.
This surgery is so deeply personal. And this surgery is so very important. It is critical to get every possible cell that could turn into cancer. I figure it couldn't hurt to ask for prayers to ensure that happens.
So if you wouldn't mind sending a prayer my way, I would be most grateful.
Wednesday, June 15, 2011
I've been spending a lot of time on the FORCE (Facing Our Risk of Cancer Empowered) Message Boards lately. It has been so helpful to hear other women's experiences going through their prophylactic bilateral mastectomy and reconstruction procedures.
A frequent topic of discussion is the difficulty sleeping post surgery. This seems particularly difficult while going through the tissue expansion process for breast reconstruction. Sleeping on your back is really the only option. But I HATE sleeping on my back. So I'm a bit worried about the inability to get some much needed rest after my surgery next week.
One common recommendation from the women who have gone before me was the use of the Leachco Back 'N Belly Body Pillow. It's a bit of an investment but unquestionably a good one. It appears to be largely used during pregnancy so I'm guessing some of you may be familiar with this uniquely shaped sleeping aid.
I haven't used it yet but what I can tell you is that this thing is huge! And really quite awkward. I'm going to give it a trial run tonight to see how well I can sleep on my back with it.
It feels kind of weird trying to snuggle up to this thing. And since it will be sharing my bed with me, I feel like I should name it. :) Any suggestions?
Tuesday, June 14, 2011
I'm busy doing everything I can to make my surgery and recovery as successful as possible. One thing I've been researching is the use of vitamins and minerals to both prepare for and recover from my prophylactic bilateral mastectomy and immediate reconstruction.
I've never really even taken a multi-vitamin regularly so I did a bit of research after reading a section in my "Pre-Operative Instructions" on certain vitamins and minerals that were encouraged prior to and after surgery.
I discussed with my surgeon which supplements were recommended and even more importantly which ones were not. With his approval, I decided to give it a try and purchased the following nine supplements.
7. Vitamin A
8. Vitamin C
9. Vitamin K
I was instructed to take these two weeks prior to my surgery and for two weeks after. Several of these require multiple doses throughout the day. Some were to be taken with food and some without. It could easily get confusing so I purchased this pill box to make it easier to manage.
While researching all of this I came across two kits created specifically for recovery and healing after surgery. I'm not using them so I don't really have an opinion or recommendation, but I thought I would link to them here in case someone may want to explore them.
IMPORTANT: I'm sharing this as something I'm doing after much research and talking with my surgeon. I don't recommend taking any supplements without first speaking with your doctor. Certain medications and procedures may make the use of some of these harmful, so you'll want to be sure to discuss taking any of these with your medical team first.
I am curious if anyone has any experience with this or supplement use in general. I know a healthy diet is the best way to get the vitamins and minerals we need. However, I keep reading about the benefits of vitamin D for example and have been really interested in the pros and cons to supplement use. If you have an experience to share, I'd love to hear it!
Monday, June 13, 2011
I've acquired some reading material to entertain me while I'm recovering. I'm big on memoirs. I love learning whether through my own experiences or others'. Out of all of these books, I'm most excited to read this one.
I've been begging my boyfriend to read this with me for a while. Although an avid reader, he has no interest whatsoever in Dewey, full name, Dewey Readmore Books. However, yesterday he actually appeased me and read one chapter. Yep, one. But hey, it's a start right? :)
So how about you? Any great reads lately?
Saturday, June 11, 2011
Friday, June 10, 2011
A person who does not have cancer, but has precancerous cells or a genetic mutation known to increase the risk of developing it: a pre-survivor.
With the rise in genetic testing and groups like FORCE (Facing Our Risk of Cancer Empowered) that encourage women to find out whether they're likely to develop breast or ovarian cancer, some previvors are taking such drastic measures as getting preemptive mastectomies or hysterectomies.
Previvor: Past, Present, Future
Thursday, June 9, 2011
After my appointment mentioned here, I spoke with more women who had undergone breast reconstruction locally and set up appointments with two other plastic surgeons.
The second plastic surgeon I saw was fantastic. He was really nice, spent a lot of time with me and was authorized to perform surgeries in the hospital where I was scheduled to have the prophylactic bilateral mastectomy. The only thing he didn’t do was use AlloDerm which is donated tissue attached to the pectoral muscle during the reconstruction process. Using AlloDerm (or Strattice) is not an entirely new procedure; he just did reconstruction without it. It's my understanding that I'm someone that could really benefit from using it.
About an hour later, I went to see the third plastic surgeon and quickly knew he was the one I wanted to do my reconstruction. I'll refer to him as Doc S. Doc S spent an enormous amount of time with me covering all options and addressed each and every one of my concerns. He also utilizes some techniques that no other surgeon had even mentioned such as using botox in the muscle to aid in the tissue expansion process.
One problem; Doc S was not able to perform surgery in the same hospital I was scheduled to have the prophylactic bilateral mastectomy.
However, Doc S works at the same hospital I had had my last biopsy at that required a surgeon to do a lumpectomy. That surgeon I'll refer to as Doc W. I adored Doc W and felt completely confident and comfortable with him. So I made an appointment with him to see if he would perform the prophylactic bilateral mastectomy.
He reviewed the mammograms and ultrasound of my latest breast mass mentioned here, and we discussed at length my risk factors including the most recent development of a known BRCA gene mutation in my family on my mother’s side. He agreed wholeheartedly with my team of doctors at the other hospital and was willing to do the surgery.
I was so happy I even clapped my hands! He just smiled. I know most women don’t applaud at getting their breasts removed. For me however, I really look at it as saving me a battle with breast cancer if not even possibly saving my life. I said it before, but I think my Mom’s passing has something to do with me living.
I now have two of the best surgeons around lined up to guide me on this journey. My doctors at my new hospital are working really well with the surgeons at the other hospital to get me on my way to doing everything I can to prevent the cancer that took my mother away way too soon.
Wednesday, June 8, 2011
I mentioned yesterday that I should be recovering from my bilateral mastectomy right now but my surgery was canceled. It was canceled because I was sick but guess what? I would have canceled it anyway. Here’s why.
I was required to see a plastic surgeon by my breast surgeon to explore options of breast reconstruction. I went into the first appointment not really prepared for anything. I thought my mind was already made up that I would NOT have reconstruction after having watched my best friend and two other close friends struggle through their reconstruction process.
They had undergone DIEP, TRAM and Latissimus Dorsi Flap procedures which use your own body tissue to reconstruct the breast. I was not interested in going through that at all. Turns out I'm not a candidate for those procedures anyway.
We discussed another route of using tissue expanders followed by implants to reconstruct my breasts. That seemed totally doable to me. I began to get excited about being able to do this and immediately began researching and speaking to numerous women who had done the same.
A week before my surgery, I went for the follow up and final appointment now armed with a bunch of experiences (both good and bad) from women who had undergone this procedure and a page full of questions.
Unfortunately, this appointment turned very quickly. The plastic surgeon got extremely defensive when I mentioned a gal who had an unfavorable outcome and needed another surgery when her implant slipped to her navel. His posture completely changed and the direct words out of his mouth were "I take offense to that." when I was explaining to him how a different plastic surgeon needed to step in and help this girl.
I was really taken off guard and I didn’t understand why he took offense to this. I was simply trying to understand possible complications and determine how probable they were.
I got the feeling he thought plastic surgeons could do no wrong. He said he felt the surgeon who did the mastectomy likely caused the problem. He kept repeating that all he could do with me was work with what the breast surgeon left him. While I’m sure that’s at least partially true, it nonetheless left me with a feeling that he didn’t hold himself accountable for any unfavorable outcome.
I don’t expect my reconstructed breasts to look perfect. Not by a long shot. But I need to feel comfortable with the surgeon. I need to feel comfortable asking any question, sharing any experience and working together without feeling like I have to walk on eggshells not to say something he may take offense to. I was not about to enter into the very long process of reconstruction with someone who made me feel this way. So the search began for a new surgeon.
Tuesday, June 7, 2011
Two weeks from today I will be in the operating room at this very moment undergoing a bilateral mastectomy followed by the first stage of reconstruction. I'm growing more anxious by the day but still know with certainty it's the right thing for me. I'm busy getting ready for my surgery but thought I would give a quick update on some things.
1. My surgery is on Tuesday, June 21st. It was suppose to have taken place on May 20th but I got sick and was also unsure of somethings so the surgery was canceled. I'm very happy how everything has turned out and pray I can be healthy enough to have the surgery as scheduled.
2. My sweet Harley is doing great! I do believe (knock on wood) I finally have him potty trained which has made my life so much easier. I just fall more in love with him every day!
3. My Dad is doing fantastic! It's been five months since his open heart surgery and he is doing so well. I'm so grateful each and every time I get to hug him and thank God for the surgeon that was able to replace the torn valve in his heart to help him heal.
4. Overall, I am doing much better. I had shared how much I was struggling in this post here. For a few months after I wrote that post, things got even worse. In time however my heart began to heal and I'm in a much better place emotionally now that I have been in a very long time. I thank you all for helping me through that process.
I hope to post more before my surgery but if time gets away from me, I would like to thank you now for all the support you have all given me since starting this blog over a year ago. I can not accurately put into words how much your friendship means to me. I love you guys!!
Monday, April 25, 2011
Hey, remember when I was thinking of adopting a kitty from the shelter? Well, I held off about a week, went back and saw this little guy.
I had already seen him on the shelter's website and knew there was a fairly good chance if I went in that day, I would not be leaving without him.
It was obvious to everyone including me that his resemblance to Buddy was no accident. Was I trying to replace Buddy? I don't know. All I knew is that after the loss I had suffered the previous few months, I was too heartbroken to act rationally and rather than drown my sorrows in alcohol or some other destructive behavior, I impulsively adopted a puppy from the shelter who just happened to look a whole lot like my sweet Buddy.
But he is NOT my perfectly behaved, non-barking, mild mannered Buddy.
He is more than a handful. He is hyper, messy, pushy, destructive, loud and a complete slob when he drinks. I've never seen a dog be able to displace water about a three mile radius around his bowl while attempting to drink it. And he does not have an "off" button when it comes to food. Sweet Jesus this dog loves to eat!
But I'll tell you what, he is sweet. He is so, so sweet.
All he wants to do is be by me. He will drop his favorite toy, favorite treat or excitedly jump out of a sound sleep just to get the chance to snuggle up and kiss me.
And this may sound odd, but I began to feel quite quickly that my Mom and Buddy had a hand in this. While I'm sure they're busy enjoying the sideshow of me trying to manage this dog on a leash, I'm convinced they knew how much he was going to help me.
The previous year led me down a path the resulted in me pushing everyone I cared about away. But now this puppy was doing the pushing.
He really has helped me heal and move forward. He also has this uncanny ability to remind of things I should be doing by his own behavior. I look forward to sharing some of those stories with you in the days to come.
For now, I would like to introduce you to my sweet Harley.