Hello to all those who follow and enjoy reading what I have to say and write. I'm back. A LOT has happened this year and since I haven't been writing. I was having a bit of trouble with my blogger in the beginning of the year trying to write. It kept shutting down on me and that got me so frustrated that I took a break for awhile. And in taking a break, I began to slide back down into a dark place. The same dark place I was just in and had started to find my way out of that I wrote about. It's amazing how fast that happens. I was just writing before this post I am writing now how I was coming back up from a dark time. I was doing well with my physical energy and that had a direct effect on my mental and emotional rise in moods. But no matter how hard I tried to keep up with this new energy and view of life, I felt myself slipping again. And I couldn't believe it. How could I be slipping again ALREADY?!! This was too fast of a turn over.
For a long time, years and years, I would wake up every morning and live through each day not feeling good. It wasn't symptoms of a cold or a flu or any other kind of sickness, but I just didn't feel well and I couldn't quite put my finger on it. I knew I was always tired. And not like I didn't get a good nights sleep type of tired. My muscles in my legs were so exhausted that I could barely stand for very long before I needed to sit down. Even sitting down was too much energy output. All I wanted to do was curl up in my bed and there I could finally rest...sometimes. I didn't want to hang out with my brother or my mother or my friends. I didn't want to eat. My mother would have to force me to drink something. Every once in awhile I would have just enough energy to come out of my room and sit in a chair and watch something with my family. I would try to pretend that I had more energy than I had and put on a smile, play around with my brother, talk to my mother so they wouldn't worry too much. But to be honest, I felt like I was slowly dying. And it turns out, I was right. I will come back around to that.
For a couple years now, I had been thinking very seriously on getting a double mastectomy. In the fight to save my life in 2008 when the doctor was working on me after I had been flown in by life flight he had a moment to come out and give my parents an update. Many things were discussed including my breasts. He said he could not do anything for my nipples. They were already burned off when I got here. This devastated my mother and father and when they regained their strength to ask if my breasts would be saved, my doctor said it would be very difficult for they were burned quite badly and he was having a hard time working the grafts on them. My mother pleaded to save them if he could. Eventually, my doctor was able to save them. My mother pleaded to save them because she worried that with everything else that was going to scare and shock me from the extent of this injury, she didn't want me to have an even bigger shock when I found out I had lost my breasts on top of everything else. Looking back now, I wish they had just taken them because of the problems with contractures and such excessive scarring I had with them that they caused me incredible pain and enormous discomfort that they caused on my chest. Soon, because of my intensely aggressive contracting and scarring, my breasts began to be pulled down and flat and the most annoying and uncomfortable of all, into my armpits. Not only were they painful and uncomfortable like this, it was unbelievably aesthetically displeasing and downright embarrassing for me because I couldn't even get them in a bra to look at least a little normal. I was embarrassed going out anywhere and I was even embarrassed just being at home. I felt I made my brother and father uncomfortable with these breasts that were pulled down and oddly into my armpits. My breasts were so tightly pulled and scarred that there would be no way to get a mammogram when it came time to do that, I would have to go through an MRI every year.
After going through all of that for six years - the pain, the discomfort, the intenseness of the pull of the contractures and scar bands that just got worse and worse, uncomfortable going anywhere in public and even being uncomfortable at home around my family - I began to think very heavily and seriously in the past two years about going through with a very difficult procedure both physically and even more so emotionally, a double mastectomy. Once I had made about a 90% decision on my own to do it, I talked with my mom. She really wanted to make sure that this wasn't a rash decision. Once I explained everything and how awful I have been feeling with these breasts for six years, that I had been thinking seriously about doing this for the last two years, she truly understood my decision and most of all why I had made this decision, she was on board. Next I talked to my dad and it went really quite smooth. He was immediately and completely on board with my decision to do this and thought that I would be much more comfortable. And as everyone was informed of my decision to get a double mastectomy, I got nothing but positive feedback and there was always one common belief among everyone in the family - I would be so much more comfortable without those "lumps" being pulled every which way and causing my own discomfort and pain gone. With all this awesome support from my family, I had made my decision and I felt good about it.
I had a post-op appointment for my latest surgery, surgery #45, on my lip and a small release underneath my chin so I decided I would bring up the problems I was having with my breasts and the possibility of getting a double mastectomy at this appointment. Everything looked really great with my lip actually so I was quite thrilled with that. There was, unfortunately, a problem with the graft underneath my chin on my neck that I had been dealing with ever since the surgery - I was leaking a clear liquid out of the left bottom corner of the graft. When he examined it, he became very upset with himself because he's a bit of a perfectionist (which is good in a doctor). Somehow he had nicked a salivary gland when removing the contracture there underneath my chin. And one of the reasons he was so upset about this mishap is because it's actually a serious and complicated situation. It's not so easy to fix and the risk of infection was prominent. He was going to have to consult with some of his colleagues about how to proceed with this. I had decided to make an appointment with my first burn doctor who knew me and my body the best at this time with Vangelisti now gone and see what he had to say about me getting a double mastectomy. He was quite worried about my healing process with such a large wound because my body does not heal well. That seemed to be his main concern. He also had some worries about trying to do a double mastectomy on grafted skin. When my appointment with Kim was almost at its end I took the opportunity to talk to Kim about what Pulito had to say and see if he had anything further to say on the matter. He listened to what I told him Pulito said and then Kim took another better look at my chest and decided that he would be happy to talk to Pulito on the matter.
Not too much time had passed since that appointment that the leak in the graft just under my chin suddenly seemed to stop leaking completely so I emailed Kim's PA and let him know. Not much time had passed when I heard back from Steve saying first that he was glad to hear about the leaking salivary gland healing and then he asked that I call and make an appointment to come back up to talk with Kim about the process of the double mastectomy. So once again, we were headed down I-84 west towards Portland.
The appointment with Kim went good. He leaded off with saying that he and Pulito had a discussion about my request for a double mastectomy. They had a lot of worries but they also knew that I was in a great deal of pain and discomfort so they decided to go ahead and accommodate my request. When I heard that I felt happy and scared at the same time. However, he said that this wasn't going to be a normal mastectomy. Because they would be working with grafted skin and a unique patient that contracts and scars like no other patient they've seen, they would have to start with tissue expanders. My body tensed at the mention of tissue expanders. I thought I was done with them for awhile. And then it got worse. I was going to have to have four tissue expanders inserted into my chest. FOUR!!!! FOUR TISSUE EXPANDERS!!! I think my jaw dropped and I was silent for a few minutes. Two expanders in each breast. This was going to be brutal. And because Pulito requested that he be in on this operation they were on a timeline counting down to Pulitos retirement at the end of June, so surgery was scheduled for the next week to put the expanders in.
The surgery went well. No complications. But my recovery did not go so well. My recovery after this surgery was god-awful. All I wanted to do was sleep. I felt utterly exhausted. As if I hadn't slept in 3 weeks. The only time I really opened my eyes was to take meds, press the nurse button for pain meds, and to get out of bed to go to the bathroom, which was like some medieval Chinese torture after a surgery like this. It was like my chest muscles had been ripped apart and even just attempting to scoot to the side of the bed was a mountainous feat. That part alone took 15 minutes. Then there was standing up off the bed. Who knew that standing used your chest muscles? Of course, your legs are the primary source of power, but let me tell you, your chest comes into play as well cause when I just tried to stand up from the bed the first time, I fell right back down on the mattress because I wasn't prepared for it. Next, came the challenges of getting my pants down and getting sat down on the toilet, all of which required help. Now imagine this: I can't even wipe my own bottom my chest hurts so fucking bad. And it's not just the pain, I'm so weak I can't wipe my own bottom. Then I've gotta do it all again, in reverse. This whole process could take up to 25 painful and torturous minutes. It was so awful to try and get out of bed and go to the bathroom that when I felt that first inkling that I was gonna need to go soon, I tried to suppress it, ignore it, fall into a deeper sleep, anything! just so I wouldn't have to go through the pain and agony of just sitting up and getting out of bed and then everything involved in the actual process of going to the bathroom. This went on for the first two days out of surgery. My poor mother. Just sitting beside me, just reading, basically by herself cause I was out of it. Finally, the third day out, I was starting to wake up a bit and was able to convince the doctors and nurses that I was ready to go home. I just wanted to be in pain and miserable in my own home, in my own bed.
When working with tissue expanders, you have to wait two weeks or at least 10 days before you can begin starting the expansion process. So my two weeks go by and my father and I begin our weekly roundtrip Friday journey to Portland and back to go see the doctor and his PA who pump 80-100cc's in each expander. To give you an idea of the size of that, it's like going in each week to have 200cc breast implants put in each breast and continue adding those 200cc implants on top of each other every week. Completely painful and uncomfortable. We continued on with this for about 8 weeks. But something was wrong. Something was weird because with that amount of expansions for that long, I should have had as big of breasts as the woman in the Guinness Book of World Records has. But my breasts were not expanding like that. And as I went in for the last couple of expansions, something felt weird that I couldn't quite put my finger on. It hurt and it didn't feel normal. I just had a feeling something was wrong. How wrong I didn't know until I went in for surgery to have my breasts removed on June 20th.
As it was told to me by my doctors, the tissue expanders did an unusual thing - instead of expanding outward stretching the skin like they were suppose to and designed to do, they expanded inward against my breast tissue, which explains why they never felt right and why my breasts never looked bigger from the expansions. This was not a good thing. So as they opened up each of my breasts, there was no extra skin to use that they really needed so they had to pull pretty tight to close the wounds, particularly the outer corners. And with how tight they had to pull those outer corners to come together, there was great worry that they would lose the blood supply and the skin would die.
I can't quite find the words to describe how I felt when I woke up from that surgery and then back in my room where I started to wake some more. Something felt odd about my arms. I couldn't figure out what it was that was weird about how my arms felt. And then I figured it out. Before, with my breasts pulled to the sides into my armpits basically, I could never get my arms comfortable at my side because my awful breasts were in the way. But now, I felt my arms right close touching each side of my chest as I lay there. To feel my arms at my sides was a feeling I haven't had for over six years. It felt comfortable for once. I also noticed that my hands lay on top of my barren and flat chest. And then it hit me. I couldn't take it back now. They were gone. A part of my female anatomy was gone. I began to feel a little empty, wondering if this was another setback in my life for finding a mate someday. But I didn't linger on those feelings too long as it just felt too good to have them gone. My breasts were hideous after the fire and they caused a great deal of pain and discomfort and embarrassment. They also always made me look bigger than I was and with them gone now, I didn't look so big and my body took a slimmer shape. Because of that, there was a little bit of confidence restored in seeing people.
The next day, I saw the doctors. As I had already taken a look down my gown to see if any skin was dying, I knew they were not going to be happy. They took down my gown from the shoulder snaps and did not like what they saw. What they feared would happen because of the failure of the tissue expanders came to be and came to be quite badly. The corners of each of the flaps of the mastectomy were turning a deep purple and you could see a hint of black coming through. The areas of the dying skin were too big to be left to heal on their own. I was hoping to go home in a couple days as my doctor originally said I would but having seen that color, I knew there was going to be another surgery to take out that dead tissue. I would not be going home. Instead, I would be going under again.
The surgery for my double mastectomy happened on Friday and I had another surgery scheduled to take care of the dying tissue that following Monday. And that surgery was going to expose a whole 'nother problem, a very large problem that could have killed me one day and the reason why I just never felt good day after day. In that surgery when they went to take out the dead skin on the corners of my mastectomy flaps, they discovered something rather odd. The dead tissue wasn't limited to just those corners. It was everywhere on my chest underneath where my breasts were. My doctor said they would just cut and cut, cutting out the dead tissue and there was no blood. They hoped they would be able to contain the dead tissue they unexpectedly encountered in my chest but as they kept cutting out, there just seemed to be no end to it. So after some time of just cutting out dead tissue (debridement) they had to stop and have another go at it in another couple of days. Hearing this news, I was devastated and scared. I was slowly dying as toxins built up in that dead tissue unable to be flushed out of my system. Plus it was an unexpected problem that had to now be dealt with which meant a longer stay in the hospital.
After that surgery on Monday, I was taken into the burn center as a bed opened up for me. I was so glad to be there. I felt so much more comfortable there where the rooms were bigger and more comfortable and of course, the staff there is family. I know EVERYONE there, not just the nurses. And they are always happy to see me and as my mother had to rearrange her schedule with this unexpected turn of events and go home to go back to work, I would feel better being in the OBC by myself with people taking care of me that I knew and could have a bit of fun with rather than floor 45 with my mom gone.
Since they were unable to get all the dead tissue out in that one try cause they had taken out so much already, they planned to go in for another debridement surgery later that week. Meanwhile, I was now hooked up to a wound vac on each of the dug out holes on my chest where my breasts used to be. So I had five tubes coming out of my body, four of them out of my chest alone. It was now an even bigger feat to get out of bed to go to the bathroom because of having to be careful of all the tubing, permanently attached to two large machines that I had to roll with me everywhere I went, and not to mention just trying to get up out of bed alone as my chest was even weaker than it was before having had not only a double mastectomy but then soon after a lot of tissue dug out of my chest as well.
With my mom now gone home to go back to work for a few days before coming back for my next surgery, I was feeling alone. Having familiar nurses and CNA's taking care of me helped but sometimes there was a float that took care of me and didn't know me well and those were hard days and hard nights to get through. I had to have a wound vac change before my next surgery so I was nervous about that. Because it's a smaller procedure they were able to set up and do it in the tank room just down the hall in the OBC. But it's not very comfortable. I had to ease myself up on to a flat, hard steel slab and lay on it. There's nothing comfortable about it. And it brought back some bad memories of when I was first in the hospital after my accident and the days when I would have to go to the tank room and get washed and dressings changed. It was not a pleasant experience in any way shape or form. There were always about five nurses working on you at the same time on different areas of your body so it was just constant torture. And then every once in awhile a doctor or resident, intern or occupational therapist or physical therapist would come in, with me completely naked with this horrible looking swollen and scarred body, to take a look and see how the grafts were doing and how I was healing. The difference in the wound vac change though was I was still clothed and put under anesthesia. But still, feeling that awful uncomfortable slab beneath my body and looking up at the ceiling where the shower heads extended from brought back those terrible memories before the anesthesia took me away and I was lost in blackness.
My mother came back up for the third surgery I was scheduled for so I was very happy to see her again. In this third surgery they did more debridement - cutting away of the dead tissue. And I came back out of it with a new wound vac and the news that I would need to stay longer and look forward to another surgery. My doctor had had to cut so much dead tissue away that he had dug clear down to my pectoral muscle so that it was actually showing through the holes he had cut away. At this time I was staying into my second week and my mother was going back home again on Sunday to work through the week until my next surgery. When my mother left for the second time on that second Sunday I was there, something in me darkened and I suddenly began feeling the same kind of feelings from when I was first admitted into the hospital. Things were happening in my current situation that were so similar to those first near four months, both in the events that were taking place and how I felt emotionally and physically. For one, my mother was getting into the rhythm of coming up to see me on the weekend and then leaving on Sunday to go back home to work on Monday. I would then be alone for the week missing my mother and family so much. There was the unknown of the doctor knowing how to proceed next because my body kept throwing them for a loop. My body not healing accordingly; as they dug out dead tissue they would put the wound vac on which was in the hopes that it would activate my blood vessels to start pumping blood into the surrounding tissue as well as for new tissue to grow so that they would be able to get a graftable surface to graft and get me closer to going home. This, of course, was not happening and it was frustrating everyone. I was being thrown into surgery after surgery, wound vac change after wound vac change. My body was being put threw the ringer and just being beat up. I began to feel so overwhelmed with all these emotions about everything that was happening to me that it all felt so much like 2008 all over again. Then suddenly I began having a low blood sugar attack. So I'm calling the nurse to tell her what's happening and I need juice and cookies while at the same time, I'm starting to having a real, serious nervous breakdown. Which, only made my low blood sugar attack worse. Tears were flowing from my eyes. I couldn't get a control on my breathing. When my nurse came back with the necessities to bring my blood sugar back up, I was in a full blown nervous breakdown with the added torture of a low blood sugar attack and my mother had just left to go back home so I was facing another week alone. It was awful. I've never had a real nervous breakdown before. I've had small panic and anxiety attacks but this was full fledged loss of physical and emotional control. And to put the cherry on top, I was alone when I lost it. I had no family or friends around to help me through it.
Inbetween surgeries and wound vac changes I would watch a lot of TV. When I'm in the hospital there's a lot of reality TV shows on and not much else so I kind of become a reality TV junkie watching shows I would never watch at home. But I did a lot of channel surfing always looking for something better to hold my attention. I read when I felt I could concentrate. Because I had all these tubes coming out of my chest, I wasn't able to shower. So, once in awhile I would get my hair washed in those caps that they use to wash your hair in bed. Depending on who was washing my hair, they would attempt to keep my spirits up with fun conversation. I wasn't too fond of getting my hair washed in the caps though because even though it did feel good afterwards, it always ended up feeling a little greasy. When certain CNA's were on that love me and I them, they would actually get me out of bed and lean me over the sink in the bathroom and wash my hair with actual water and shampoo. Boy, I would feel so good then. It's amazing what a good hair washing can do for ya. I remember one of the nights when shift change came on and my night nurse came in to see me, it was Glen, one of my absolute favorite nurses there. He would take care of me a lot when I was still in a coma in the ICU and he was one of the only nurses that would wash my hair. He thought that was important even though I was in a coma. And my mother told me he would put that cap on and massage it on my head and just talk away at me like I could hear him. He's very special to me for that. So when I saw he was to be my night nurse one night I was overjoyed. It was one of my better nights there I remember. He's a blast to talk to, very attentive and of course, he offered to wash my hair that night. While he was washing my hair, some tears welled up in my eyes as I thought of him doing this for me when I was in a coma and talking to me, believing I could hear him. And hear he was, doing it again for me and we were just chatting away like two girls. Another similarity to 2008 that tugged at my heart and brought back memories.
Everyone who worked at the OBC from nurses to wound care to the manager always loved coming in my room cause despite how I felt on the inside, which was a big emotional mess, I always had a smile and a hug for everyone. I have a bit of a loud laugh and everyone would always be telling me how they could hear me out in the halls and how they knew that laugh was mine and how much they loved to hear it. I always liked to make the nurses and CNA's days go a little better by making jokes and being silly whenever they came into my room to attend to me. They all told me constantly how much they loved taking care of me and how I was everyone's favorite patient. This would always make me feel better when I was feeling low and lonely.
I had another surgery coming up and a lot was riding on how I had healed and what they would find when they went back in again. They desperately needed healthy tissue to grow because they couldn't graft right on my exposed pectoral muscle. It first needed to be covered with healthy tissue to make for a graftable surface so I would finally be on the track to going home. This fourth surgery was early in the morning just after the fourth of July. My mother was there and had risen bright and early to get there to be with me prior to them taking me into the OR. I was very anxious and worried about this one because I feared that I had not grown the healthy tissue they needed to graft on and they would end up doing more debridement and I would be facing more time in the hospital and more surgeries. By now there were too many similarities to 2008 that were upsetting me terribly, I was incredibly beat up both physically and emotionally and I was ready to go home and be done with this.
The left side of my chest had luckily grown just enough healthy tissue and a good blood flow to graft on but my right side was still open to my muscle. So, my doctor decided to stitch together whatever tissue was surrounding the hole that exposed my muscle so that it would also have a graftable surface on which to graft. And because there was grafting done, that meant a donor site to deal with on top of it. I didn't know where they were going to take the donor but when I woke, I could definitely feel where they had taken it - my left outer thigh. And the surgery was a success in what they did. So despite the terrible pain I was in and this having been my fourth surgery in a matter of only two weeks, I felt that perhaps I would finally be going home soon...I thought.
I was now into my third week at the hospital, having spent the fourth of July in the OBC. My family and I were supposed to go camping over the Fourth holiday. I felt that I had screwed that up for everyone. Later that week, the doctor decided to remove the wound vac and see how the grafts underneath were doing. I was anxious to see how they were healing. So the wound vac came off and underneath on each side were healthy looking grafts. I could feel a great sigh of relief from my doctor when he saw the grafts were healthy after everything we had gone through. I also had a great feeling of relief sweep through my body and mind that finally something went right in this whole mess.
The rest of the week was attempting to get my pain under control which is always one of the hardest things they face when operating on me. By this time I was able to go to the bathroom on my own. It was still hard for me to stand up straight though. I walked hunched over. But I was released from the wound vac and the IV fluids finally so I didn't have all these tubes coming out of my chest and I could freely move about, walk in the garden easier than having to take that awful pole with my machines attached to them. Then there came a rumor that I may be going home that coming weekend. Possibly Saturday but more likely Sunday. All the nurses and everyone else at the OBC were happy to hear I was finally going to get to go home after all I had been through in those three weeks but they were sad at the same time because they loved having me there and hearing my laughter float through the halls as well as the fun we always had when they each took care of me. Sunday came and I was anxious to see the doctor and hear if I would be discharged or not. The residents came in before Kim did and they told me I would be staying longer to deal with my pain and my heart sank. This meant my mother would be going home again by herself and leaving me in the hospital for another week. I was in tears when I called my mom after the residents left to give her the news. She came to my room not much longer after that and tried to calm me when Dr. Kim entered my room. He asked how I was feeling and then asked if I felt ready to go home that day. I must have had the most stunned look on my face because he looked at me and said, "I don't want you to feel evicted or anything but if you are feeling the pain is better I think you are ready to go home." To which I told him that it wasn't a feeling of being evicted but rather of confusion as the residents had come in earlier and told me I would be staying longer. He seemed completely confused by this and said no, no, if I felt ready, I could finally go home. So I said, "uh, YEAH!"
As my mother and I were gathering my things and getting me ready to leave, nurses and other members of the OBC were coming into my room to say goodbye and that they would miss me. And as I walked slowly through the hall to leave, those that had not made it yet to my room to say goodbye, stopped me to hug me and wish me well. It took quite a long time to get down that hall to the doors with everyone that stopped me. But it was a good feeling to know that I made an impression on everyone in the burn center six years ago and all the times since then that everyone is always excited to take care of me again or just to have me back. They are not happy for the reason I am back, but happy to see me and brighten their days while I was there. To make them laugh and hear my laughter once again echo through the halls and put smiles on their faces.
Those three weeks in the hospital were very tough on me making it possibly the second hardest hospitalization I've had there. The first being when the accident happened. I was constantly being beat up both physically and emotionally. My body was just put through the ringer with four surgeries in two weeks, several wound vac changes, dressing changes, and awful pain and stress. So much of my time in those three weeks was so similar to the three and a half months I first spent there and those similarities caused two serious nervous breakdowns and other emotional hardships. It was also very hard on my folks with the money spent to go back and forth from La Grande to Portland and back as well as the weary drive itself and sleeping in hotels, having to bear bad news with me, seeing my rather awful chest wounds with four tubes coming out of my chest, to see me in pain and wait in the waiting room for every surgery I went through hoping the doctor would come out with good news for once but always got somewhat bad news and the uncertainty from the doctors what their next action would be to help me. Not to mention the time they both had to take off work to be down there with me. I felt so guilty about it all. But being the wonderful parents they are, they always told me there was nothing bad to feel about, to think nothing of it. No one expected this kind of disaster to happen and in a way, it was a blessing in disguise because had my double mastectomy actually healed ok and I'd gone home without the discovery of all that dead tissue in my chest, I would have gone on feeling horrible each day as I had been for years and may have possibly gotten septicemia and died one day. And that's the raw truth of my situation.
Since those three weeks I have felt so much different, so much better. But there have been times since I've been home that I've been taken quickly by grief over it all from losing my breasts to the hardships I went through day after day for those three weeks. I think I had unconsciously forced myself to stay strong through everything that kept happening to me and tell myself I was OK with the double mastectomy while I was there in the hospital that when I had time to really relax and breathe, in my own home and familiar surroundings, I would get hit with grief like a punch to the stomach. My energy levels are low one moment and high another and once in awhile I get upset and then I get mad at myself for feeling so weak. But I have to remind myself of everything I went through, how beat up I was and yet, how strong I was to get through it. Somehow, I willed to get through every day I was there, every goodbye to my mom, every pain, every stress, every surgery and wound vac change, every thing that put me back to 2008, every piece of bad news, every low and every tear that fell from my eyes. I look back on those three weeks and wonder how I got through it all. Sometimes, just sometimes, I give myself the credit of having the strength to have done so cause I'll tell ya, it was a most terrible and lonely experience. But I also have a belief more so now since then that I'm gonna be OK. At least for now.....