In reading message boards and asking the DIEP Support Group on Facebook one item I saw talked about a lot was a hospital bed. Many ladies said they rented either a hospital beds or a recliner with a lift. Like I mentioned in my last post, I found a used hospital bed for a killer price. Tonight the sellers delivered it and as Josh and I put it in its place and put the sheets and blanket on, that is when I felt it. My chest tighten, my heart rate increase and I felt myself start to zone out.
I want to run and hide. Maybe this has been a 8 1/2 month long nightmare. Someone come shake me while I hope that it will wake me up from this bad dream. Tonight it is all coming back. Seven slow motion rolls down the hallway, seven last minute prayers that God would see me through another procedure, seven times waking up in recovery in horrible pain. Countless days spent in hospitals, countless days away from my family, so many days spent wondering where in the heck this all went so wrong.
As I have told my story, over and over, to friends, family, strangers, I put on my pretty pink "brave cap" and portrayed a strong woman who could get through just about anything. With each time I have shared my journey with someone, I speak through a rapid heartbeat, a feeling of panic from head to toe......but my voice somehow managed to finish the narrative each and every time.
This time its very different than before. I am FREAKING OUT!!! In all honesty I don't know how I am getting through this minute by minute. I have heard it......"You have so many people thinking about you", "Everyone I know is praying for you", "This time is going to be different", or "You are going to ROCK this!". Sure, I know all those things are true. But right now I am a weak, scared, tired, fragile, very uncertain girl.
I HATE asking for help, and this time I really don't have a choice. To everyone that has volunteered to help me and my family get through the next 4-6 weeks, I will NEVER be able to thank you enough. I am going to need a lot of love and support to get through this, and I am truly blessed to know I will be surrounded by just that.
Check in time is 5:30 AM on Monday. Really?!?!?! So we are making arrangements for the kids and we will make a VERY early morning trip to the other side of the water to do this thing. I am going to spend the next thirty or so hours preparing physically and mentally as best I can. Thanks again for EVERYTHING!
Reality is setting in. I'm pretty much freaking out! There is so much going on and its adding so much stress to all of this. I feel like my body is shutting down. I just want to curl up in a vall and sleep through the next couple months.
I have been reading stories on the DIEP Flap Support Group on Facebook. I don't think I should have looked at the pictures. Pretty freaky looking! I know that the scars will eventually fade, but still. I decided it might be a good idea to ask the ladies what they considered "must have" items for after the surgery. I got some awesome ideas from them. Here are some of the items that they mentioned that I plan on picking up:
- Cotton tank tops (dark colors so that if I leak or bleed it won't stain)
- IPad loaded with books and movies
- Little pillows (have some in the car to put between me and the seatbelt)
- New wash cloths to wash and dry incisions (maybe baby wash cloths because they are soft)
- "Grabber" (for if I drop something, so I don't have to get up out of my bed or chair. Also because I will not be able to raise my arms above my head for several weeks)
- Lollipops (for the two days post op that I won't be able to eat or drink other than ice chips. The lollipops will help relieve the dry mouth)
- Camera
We found a hospital bed on Craigslist for $150. This was another thing that several of the DIEP ladies suggested. Now I just need to decide if I want the bed upstairs or downstairs. If I have it downstairs I will either sleep downstairs or we will move the recliner upstairs for me to sleep in at night.
The biggest Godsend I will have will be my dear friend Jen being here for two weeks. She will be flying in from Texas and I am so excited to see her! Having her here to help get the kids off to school and help me as needed will be wonderful. The kids will get out of school the same day that she leaves so I will have the kids around to help me a little.
So, the countdown begins.......just five more days.
7:02 am
I'm sitting on the ferry waiting to head over to Seattle. Today I have my pre op appointment and also have to do an abdominal CT scan. I guess during the scan they use dye to locate the main artery and veins that they will connect to my tissue during the surgery.
Just 13 days until the the big surgery. I've had a lot of anxiety the last week or so. Its becoming real that its right around the corner. This is the big one, and its a little scary. Josh will only be home for the first week or so after my surgery so I won't have the support around the house afterward and that worries me.
10:13 am
The CT scan went well. The dye causes a weird feeling. A warm feeling starts at your head and really heats up between your legs, which makes you feel like you are actually peeing on yourself. Oh yes, LOADS of fun!
I visited the gift shop on the way through to get food. I picked myself up a new breast cancer awareness bracelet. I have a hard time passing up Breast Cancer products, especially when donations are made with each purchase. After I left the gift shop I stopped at the cafeteria and grabbed breakfast. I couldn't eat before the CT scan so my tummy was a growlin. Feeling much better now.
10:49 am
Sitting in the Surgical Specialties Clinic. I'm way early for my 11:30 appointment, but I found some Avon catalogs on one of the side tables so it's time to start shopping!! Josh just showed up so it will be nice to have him in the room when they are giving me all the info today. I am in a daze and he is so good at remembering details.
1:00 pm
The appointment went well. I didn't actually get to see my surgeon, it was a Resident I believe. I am a little disappointed about that, but I guess I just need to keep the faith in my surgeon and the hospital staff. The Resident went over the way things are going to happen. This is going to be a really tough recovery. They gave me a thick folder of reading materials and told me that I would hear from someone on Friday to tell me when my check in time would be. This is really happening!!
I spent the weekend worrying for no reason! Thank GOD! I emailed my previous Plastic Surgeon and he took care of it right away. Everything is a go for June 4th. I have my preop appointment tomorrow to go over the details. It will be here before I know it!
Josh is telling me not to worry, that is most likely a big mistake, but how can I NOT worry. When I opened the letter my eyes seemed to scan directly to the words "Bilateral Breast Reconstruction with DIEP.......our physician/peer review have DENIED request." I instantly felt sick to my stomach and my heart start racing. I could hear my voice screaming in my head "This CAN'T be"! Not after all the last eight months of enduring HORRIBLE pain, my body getting through numerous infections, not after FINALLY feeling like the end of this terrible ordeal was possibly in sight.
I know he is probably right. They wouldn't have scheduled my surgery if they hadn't gotten the approval right? I know they had called and told me that they needed me to contact Dr P and have him send them a referral for the actual procedure because they only referral they had was just for the consult. He emailed me and told me that he had sent what they said they needed. UWMC sent me a letter with my upcoming appointments on there, so this HAS to be a mistake.
I will have to go through the weekend TRYING not to worry........sure. :( Lots of prayers and positive thoughts would be appreciated. I really need this to be a mistake.
Again, I am super behind on blogging. Sorry! One of these days I will get caught up with typing out the entries that I have written in my paper journal and it will help fill some of these gaps.
My plastic surgeon basically gave up on my reconstruction. He basically said that it looked like my body was yet again rejecting the tissue expanders and he wasn't sure what else to try. He chose to refer me to the University of Washington Medical Center to hopefully have a procedure done called the DIEP (deep inferior epigastric perforator). The DIEP flap is a tissue flap procedure that uses fat and skin from your tummy to create a new breast mound after a mastectomy. This procedure takes its name from the deep inferior epigastric perforator artery in your tummy area and is a form of autologous reconstruction -- a surgery that uses your own tissue. This is a pretty specialized surgery and UWMC is one of the few hospitals in the Northwest that perform this surgery.
There were only a couple surgeons that were recommended to me, one was a male and one was a female. I chose to go with the female surgeon, Dr C, because I felt like she might try a little harder to give me something as normal as possible in the end.....because she is a woman too. I had my initial consultation with my new plastic surgeon on April 27th. I spoke to a resident first. He explained the DIEP surgery in depth and then brought out a binder that had before and after pictures. It's a little different than what I had pictured in my head, but mostly just the scars will be different, and I plan on eventually tattooing over my scars, so it won't matter. At one point he said "After going over your info I can see you have been through ALOT in the past several months. I just want you to know that you are at the right place and are in very capable hands." that was very comforting, for sure. After he went over everything he left the room and then returned with the surgeon. My first impression of her was a good one. She was very sweet and told me that she does the surgery all the time, and not to worry.
The tentative date for the surgery is June 4th. I am scared.....BIG TIME, but I know that the love and support from all my family and friends will carry me through this. The surgery itself will take 4-6 hours and I will be in the hospital for probably 3-5 days. The recovery will be a rough one. Most likely won't be feeling very good for 2-3 weeks and the full recovery will take closer to 4-6 weeks.
I have been through SOOOOO much through this journey and I am hoping and praying that the new surgeon and hospital will be just what I need. I have my pre op appointment on the 22nd so I will have a little more information on exactly what is going to happen.
Please keep me in your thoughts and prayers as I try to prepare myself emotionally for this next phase.
After my surgery last Monday I never really started feeling better. By the end of the week I started hurting really bad on my left side and just felt really crappy. On Thursday night I decided it was time to make a trip to the ER just to make sure everything was ok. They got me right back into a bed and gave me pain medication to help me get comfortable. When the doctor came back to talk to me he said that he was going to call down to Madigan and see what they suggested we do. He came back not to long after with the answer......they wanted to have me transferred down to them because of my history of complications. So that is what happened, I was transfered by ambulance and admitted.
Friday morning the plastic surgery team, minus my doc, came in to talk to me. I guess my doc was on leave so the head of Plastics was the one that came by to see me. That wasn't so bad! They sent me to have an ultrasound done so that they could get a better idea of what was going on inside my left breast. During the ultrasound they found a small pocket of fluid which they decided to aspirate so they could test the fluid. They could also see that the tissue around my expander was all very inflamed.
Lucky me, I have been in the hospital all weekend basically because my doctor wasn't around. They came in today and told me that they have put me on the schedule for Wednesday to take the expander out. I pushed for the surgery because 1) There is no reason for it to be in there because it will have to come out for the DIEP anyways, and 2) I didn't want to risk going home and having to come back in a week or two because things have gotten worse. So Wednesday afternoon I will have my 7th surgery, my 3rd in the last six weeks. Crazy! The good news though is that my body will be free of everything and I can heal and repair for the next several months before my big surgery.
So, thats my update for now!
Surgery went well, I guess. I went to sleep and I woke up.....without a boob! Of course, when he opened me up and took out the expander, the fluid in the pocket was cloudy/murky. They are testing the fluid but he had to assume that there was lingering infection and could not put a new expander in. So, once again I am lopsided and if I thought my right breast looked crazy before it looks even more disturbing now!
I was too groggy after the surgery to carry on a conversation with my surgeon but Josh spoke to him and passed on the information. What he relayed to me was something I wasn't prepared to hear. Basically he said it sounds like Dr. P has kind of thrown up his hands. I guess that he is starting to think that this form of reconstruction is not going to work because it looks like my body is rejecting the expander's. He is suggesting that I go with The DIEP flap (deep inferior epigastric perforator) procedure. The DIEP is a tissue flap procedure that uses fat and skin from your tummy to create a new breast mound after a mastectomy. This procedure takes its name from the deep inferior epigastric perforator artery in your tummy area and is a form of autologous reconstruction -- a surgery that uses your own tissue. The surgery will take about 6-8 hours, will require a probably 5 day hospital stay and will be about a 4-6 week recovery. This is a MUCH bigger surgery than I had ever imagined having to endure during this journey. My doctor will be sending me to University of Washington Medical Center for this surgery. They are among the few places in the Northwest able to offer surgeons with DIEP flap expertise; patients come to the hospital specifically for this procedure. So at least I know that I am going to be in VERY good hands.
Thank you to everyone once again for your continued prayer and support! Love you all!
Yes, you read that right! Over the last week or so I have been experiencing a lot of pain on my right side and the tissue expander feels like it has rotated or something. I can feel a hard edge across the front of my breasts along the incision scar. I have NO clue what is going on under there but when I lay on my back, it seriously looks like an alien boob! I am not joking! This afternoon I was laying on my back watching TV and was feeling around on my breast when I discovered the odd misshaped mess that was going on. LOL
I saw Dr. P on Tuesday and he agreed that it did feel and look a little strange but he didn't really know what could be causing it. He suggested that we do an expansion to see if adding some saline solution into the expander would help the shape normalize. Right after he finished the expansion it did look a little better and I went home hoping that we were on the right road and that the alien boob was just a temporary thing.
Unfortunately the way the hard edge was pushing up against my breast it felt like it had bruised the tissue inside and having the stupid expander moving against it really hurts. I emailed Dr. P and he decided that he will take the right tissue expander out tomorrow morning. He told me that if everything looks pristine when they open me up, he will replace the tissue expander. But, if there is any sign that there is a lingering infection he will not be putting anything else in there. Of course I am frustrated. I don't understand why things are not improving. I just want to start feeling better. :(
I will update you after the surgery, see you on the other side!!!
I have decided to post some progress pictures. I don't want people to HAVE to look at them if they don't want to, so I have made a separate blog to use for pictures and then I can include the link in a post here. That way people can continue to follow my blog without having to look at my breasts the way they are. Doing it that way will also keep this blog G rated. lol
So, here is a link to the first picture. It is from a couple days ago and shows my nippleless scarred breasts, :(
Pictures
Still have quit a bit of pain. I think some of my pain is from over using my arms. I am really bad about adjusting myself in the bed or even on the couch. I push myself up with my hands or elbows too much I think, so that could definitely be playing a part in some of the pain.
I am finding myself getting angry about the loss of my nipples and the length of my scars a lot. I have a feeling that the way my scars look have a lot to do with how upset I feel about my nipples being gone. It's just too shocking of a sight. When I feel myself getting worked up about my nipples I try to remind myself that they are gone, there is NOTHING I can do about it.
Sacrificing my breasts is something that not many people in my life can fully understand. Thinking back about my breasts, my fondest memory I have is of nursing my babies. I was not able to nurse my first born son very long because of lack of knowledge. I thought because he wanted to nurse so often, he must be starving. So I started supplementing with expressed breast milk and formula and at 3 months he refused the breast. There was nothing that was going to get that baby to take my breast. With my next two children was much more educated and breastfeeding was natural from the start. I chose to nurse an extended time with my second and third children. I had done lots of research and was aware that the longer I nursed them past the age of two, the more it would decrease my chances of getting breast cancer.
There is nothing like nursing your baby. Such a special bond to have with your child. I will hold the memories I have of my years of breastfeeding very dear to my heart. They are wonderful, happy, loving memories that nothing can take away, not even the loss of those very breasts. In fact my memories if nursing my children played a big part in me being able to move forward with the mastectomy. I courageously said "I have nursed my children, my breasts have done their job. Knowing my risk, I feel it would be selfish of me to keep my breasts at this point.". More than anything I wanted to be able to live my years, watching my children grow up, marry, and become a grandmother hopefully never having to go through cancer. If keeping my breasts would increase my chances of not being around for part of that, then TAKE THEM!!!!
I did it. I sacrificed my breasts. What has come in the months that have followed.....I could NEVER have prepared myself for that. Recovering from my fourth surgery in almost 5 months, it's exhausting! I hear over and over again, "You are the strongest chick I know!" or "I don't know anyone else so brave". I don't feel that, yet. I appreciate the kind words very much, don't get me wrong, but right now I am in the middle of a painful journey and I like so many days I just want it all to be over because it's "too much". That doesn't feel very strong, or brave.
So I am going to try to get comfortable in bed, and hopefully get some rest. Tomorrow is another day of healing, another day closer to less pain. Goodnight.
With each passing hour the pit in my stomach feels like its getting bigger and bigger. There are no words that can describe what I am going through right now. I am NOT ready for this surgery, AT ALL. I can't stop thinking about the moment that I will see myself in the mirror for the first time. I don't think there is any way that I can prepare myself for that.
I spoke to my dear friend tonight, who had her mastectomy last week. It meant so much to me that she called to check in on me, and how I am feeling. The feelings that that come after these surgeries are emotions that I am pretty sure only fellow mastectomy patients can understand. I feel so blessed to have an inner circle of friends that I can cry to and they KNOW my pain.
I am also blessed with amazing family and friends who have supported me through these last several months. Where would I be without my "Pink Army"? I have drawn so much strength and encouragement from the messages, calls, cards, etc that I have received from so many.
In the coming days/weeks/months I will need everyones love and support more than ever. I know that I will get through it, I have to. I will continue to remind myself why I started this process in the beginning. By having the double mastectomy I have decreased my chances of getting breast cancer by approximately 95%. That's a pretty dang good reason, right?!?!?!
Thank you again, so much, for everything.
I made another appointment with General surgery today. At this appointment I will set my surgery date and also get a referral to see the plastic surgeon to go over the reconstruction part. I have been blessed to have found a blog that a young lady shares her journey. Reading her story has both scared me and has given me a valuable insight. I will be speaking to the surgeon about whether early May is an option for my surgery date. Josh's schedule will include several times away when the ship comes out of dry dock later this year, and so I need to do it earlier rather than later so that I can have his help.
The initial surgery will be removing all my breast tissue and then they will put tissue expanders in behind my pectoral muscles. I will have to go back in as often as once a week for them to slowly inflate the expanders to stretch my muscle and skin. After they have inflated them to the fullness they need for the implants, I will have to go in for another surgery. Hopefully that will be the only other surgery, but there might be need for additional surgeries for various different reasons.
From what I have read on this ladies blog, the recovery process is painful and slow. She said for 6-8 weeks she couldn't lift more than 5 lbs, she couldn't push or pull herself, she coulnd't raise her hands over her head. Even little things like pulling the door to the fridge was too much, because the suction was so tight. So, yeah, its going to be a long road.
Please continue to pray for me as I start this journey.
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