So since my last post many things have occurred. I am going to break this up into several different post so it is easier for me to write down, remember details, and for you all to follow.
At my last post I was preparing for my double mastectomy and lymph node dissection surgery that was scheduled for April 13th. The surgeon had explained that one night in the hospital would be sufficient in most cases and it was simply done for pain management. Also, my plastic surgeon had explained that he was ready and prepared to manage ANY pain once released from hospital. The plastic surgeon was included in the surgery because he placed skin expanders under my skin and muscle in order to stretch my skin back out for reconstruction later. He also placed a pain pump that had two lines feeding me morphine into each side of my chest. The pain pump was held in a "fanny pack" kind of thing around my waist. I would stay in the hospital over night be released from hospital, go directly to plastic surgeon's office for wound care instructions and then happily go home to recover. So that was the plan. Now let me tell you what really went down!
Remember, when my last round of chemo had been scheduled for March 21st and I almost didn't get to have that treatment because my white blood cells were so low, but on the day of the last treatment the cells were just enough for me to complete my last round of chemo on that day. Well, my mastectomy was scheduled for April 13th which was on a Wednesday, the doctors had given my body about 3 weeks to recover/calm down from the chemo that is why that date was selected. On Friday April 8th I was scheduled to have lab work done to ensure I was able to withstand the upcoming surgery. I had been feeling fine, and didn't have a second thought about the lab work. About 20mins after I left the cancer center my oncology nurse called my cell to inform me that my white blood cells were so low that they basically didn't exist. She explained to me that if the cell count didn't improve that I would be unable to have surgery until my counts came up. ARE YOU KIDDING ME! Let me explain one thing to those of you that have not had to prepare for a mastectomy. I had been emotionally preparing for this loss for some time. I am not saying I am a woman because I have breast, but shit, they are a piece of my body and I was going to feel a bit deformed afterwards. I'm already bald with not eyelashes or eyebrows, I guess you would think loosing a pair of boobs wouldn't really matter, but again the emotional preparation was extensive. The nurse says to me that the morning of surgery they will draw labs again just prior to surgery to see if they had recovered any, and if not the surgery would have to be rescheduled. Oh right.....let me get the fucking straight. I am to emotionally and physically prepare for a surgery over the next few days that may not occur. I had to fast, I had to wash my body with special supplies, I had to have people rearrange their schedules to help take care of me afterwards, and they just act like well hope for the best honey. Fuck that! I asked if there were any things I could do to bring my white cells up to an acceptable count, all the time I knew the answer she would be giving me, "NO" there is nothing you can do! Awesome, great, I should have expected something like this....why b/c I am always the 5% of the cases that stuff goes unplanned or NEVER happens!!!!!
Here is the other thing, my brother-in-law Ryan had planned this entire bowling fundraiser on April 9th, it was going to be a great time,we would be able to see all of our friends and hang out. The nurse promptly told me that I shouldn't even go, 1) b/c bowling allies are filled with germs 2) and even if I did decide to go against medical advice that I would need to wear a surgical mask and bring plenty of hand sanitizer for anyone who wanted to touch me. Again, what the fuck! I was sick to my stomach at this point. Of course, I begin calling Sean, my girlfriends, and my mom to devise a plan, all while snot nose crying pissed/sad!
I get home and I tell Sean that I want to go to the bowling fundraiser for a bit, but I am embarrassed b/c I will be in my wig, with painted on eyebrows, and no eyelashes...oh and now a fucking mask....jesus will any of our friends even recognize me...I know that's a bit dramatic but that is how I was feeling. And you all know, I hate feeling like the "poor little sick girl". So I sat a the kitchen table with Sean and he let me cry about it for some time and then he thought of a great plan. Everyone will wear masks and we will decorate them with funny sayings! God I love him! So masks were bought and crafting supplies filled the kitchen table and we began decorating masks.
So the bowling fundraiser was amazing and I didn't care, b/c it was so obvious how lucky we are to have so many people that love us and it would be worth risking an infection or moving a stupid surgical date in order for me to enjoy our best friends and family!
I had the best massage every on Monday, the therapist was able to use special techniques that took into consideration that I might still have chemo stored in some muscles and she didn't want to disturb too much and have too many toxins released from my body. I told her before the massage began that I was open to all alternative therapies and whatever she felt would be beneficial I would be open to that. As I laid on her table I began repeating the positive affirmation "my body is healing", "I am open to my highest good", and ultimately I was able to begin meditating, which was the first time in 5 months! When I got off of that table I was floating. I was centered within myself and allowing the healing energy to flow within me! I was Home! On Tuesday I had the healing touch and it went well also.
So April 13th arrives, I had fasted, meditated, and packed my hospital bag with my aromatherapy oils, meditative music, and left home with a peace about me that this day would be a day of healing! Normally with surgeries I am really anxious and nervous accompanied with plenty of tears and literally shaking with anxiety. Not today. Sean, my mom, Sarah, my dad, Charles, and the chaplain's wife Joanna were in the waiting room as the nurses began surgical prep. First things first, they drew labs. As they waited for results they began to hurry/rush around as the doctors had finished the surgery prior to me early. I could feel the nursing staff's nervous energy filling the room. I was was still managing to stay in my meditative state, and I asked them nicely if it would be possible for them to continue the work quickly, but in a quiet and soft manner as I was attempting to remain centered in mediation. I was listening to my music and the nursing staff graciously agreed. Here is the thing, since cancer has been in my life I am finding my own voice. In my work profession it has been my job to empower patients to find their own voice and better communication with others, and it was easy for me to do this as a professional, but in my personal life I now know that I had struggled with it....not anymore!
Then the news came, my white blood cell count was damn near close to normal! We all cried, literally, out of happiness. The breast surgeon came into speak to me prior to me being wheeled into the operating room. She explained again what was about to happen and as she turned to leave, I asked her if I could see the tumor after the removal. It literally stopped her in her tracks, she turned around and said, "I have never been asked that, and I don't know, but I will see what we can do." I explained to her that I wanted to see what was in my body that has changed my life forever. She smiled and agreed. As I kissed all my family good-bye, the chaplain's wife Joanna said a prayer, and I shed a few tears, a sense of peace came over me again. As they rolled my bed to the operating room I looked back at my husband with tears down his face, I raised my fist and said with confidence,"Today is a day of healing!"
I had excellent nurses just prior to surgery and post surgery. I had a male nurse Jim who simply sat next to my head and stroked my arm as he told me all the things all the other people in the operating room where doing to me, he consistently reassured me that all would be well, I told him specifically, my gratitude for his kindness, then I feel asleep. I awoke in recovery with another male nurse named Jose, who was gently feeding me ice chips as he reviewed how the surgery had gone. Again, I made sure to tell him specifically, of my gratitude for his kindness, his reply,"oh you are sweet, this is my job." My response was,"it is your job to take care of me but your compassion is something not listed in your job description." After repeated phone calls to my doctors Jose got the permission to move me to my room.
My loved ones were already in my private room waiting, which they said seemed like a lifetime..to me it felt like 30 mins. Again, with the mind set of healing and mediating, I asked for the lights to be lowered, my aromatherapy oils and meditative music/speakers to be prepared. My loved ones were amazing, everyone was quiet and I felt as though the energy in the room was as I wanted it....ready for healing. And here comes the pain. I was able to get morphine every hour in my IV, and the pain pump that was attached to me was releasing morphine in my chest continuously. As the night progressed the nursing staff was great, and they jokingly said they wanted to stay in my peaceful room all night with me, but they couldn't help to dismiss the fact that they were having to come into my room every hour to give me morphine. Finally, one of the nurses in the early morning lifted my gown to check the pain pump....someone had forgot to unclamp the lines and none had been flowing into me. Now during this time, to manage my pain I had asked my loved ones to use my lavender aromatherapy oil on my feet and hands while meditative music was played and I focused on my breath....it was almost as if I were giving birth, but it worked, I would be able to focus and get through the pain. Now, I am not saying there were not some silent tears, a few moans, nor the benefits of the morphine in my IV, but all those things combined I did it...we did it!
I know it was very difficult for my loved ones to see me in the amount of sickness. Each of them had there times to breakdown and each of them would leave the room to do so and someone else would step in. I could feel such love in that room, and I am so grateful for the compassion and experience.
With the pain management/pain pump being and issue I was unable to be discharged after one night. The first night I had to utilize a bedpan. Now working in healthcare, I have seen it plenty of times, but now I am the patient and this was such a humbling experience, that is all I can say. I felt so child like and helpless, which is not my preference...we all know that! The next day I would be able to utilize the restroom with max assist but I did it. Now let me tell you about my second day in the hospital.
So the second day in the hospital starts out like this. I order breakfast, the surgeon visits me and she kindly brought pictures of my tumor on her phone. Again, she kind of laughed about it because no one had ever asked her for that. We spoke about discharge plans and that she would have physical therapy come in and show me the best way to get out of bed. My mom had gone down to the cafeteria to get breakfast and Sean sat next to my bed and fed me my pancakes and sausage, Lil Bit had gone home that night to take care of Deacon for us and she would be returning this morning.
Okay, remember when I said I have been finding my voice because of cancer, well this is where I really begin to find it. So Sean is feeding me breakfast and the occupational therapist Joy walks in, glances at us, and mumbles something disapproving under her breath and gives us a disapproving look. She introduces herself and says she is there to give me information about lymphedema. She continues to talk and I am not making eye contact with her from the moment she step foot into my room with her negative energy. So I stop her mid-sentence and look her right in the eye and say,"You know what Joy, before we go further, I need you to explain to me what that disgusted look and mumbling voice you entered the room with is all about." Joy responds that she disapproves that Sean is feeding me breakfast. Now inside my head I was saying some unpleasant things to this lady, let me fill you in. Thought: "Bitch don't you think I want to feed my fucking self, do you think my 32 year old husband is happy that his wife is in so much pain that she can't move her arms to even utilize a fucking fork, or use the bathroom. Bitch I just had my entire chest cut off and my armpit dug out! Bitch I have not had any food for over 24 hours because I got out of surgery late at night after dinner, so I am hungry and you know that I am already pissed about that. Oh and bitch if you would have read my chart at the nurses desk like most professional healthcare employees do you would know all of this and the fact that I am a hospice social worker, oh and that my pain has not been managed because they forgot to open the fucking pain pump tubing." Again, that was my thought process, but this is how I managed to condense that version and allow my voice to be assertively heard. Meanwhile,Lil Bit walks in with a smoothie and I tell her that Joy is upset that Sean is feeding me, Lil Bit knew by the look on my face that shit was about to get real with Joy. So Lil Bit leaned over my bed rails and said assertively, as she placed the straw of the smoothie in my mouth,"I will feed you all damn day!" We are winning this battle Joy...here we go.
So I am laughing inside, because this lady doesn't know what she is about to get. I talk with my eyes to Sean and basically tell him to continue feeding me, and he graciously does, because he can see where this is about to go. And the unprofessional and utterly annoying middle aged Joy continues to go on and on about lymphedema and how she is a breast cancer survivor blah, blah. I swing my head around and said assertively, not aggressive,"Joy, you can stop now. If you would have read my chart at the nurses desk you would have already have known that I am a hospice social worker, I know exactly what lymphedema is. You need to leave the pamphlets at the end of the bed because we are done here. I am waiting for physical therapy to educated me on getting in and out of bed so we can go home, good-bye." Joy stood in shock, stuttered a few times and said arrogantly well I can show you how to do that. Me knowing this was not true I, went along with her suggestion just to see what this idiot really thought she could teach me. She basically told me to cross my arms over my chest and "just roll out of bed". Now anyone with sense knows this is not acceptable. And for those of you that have not had a double mastectomy and lymph node dissection let me inform you there will be no crossing of arms over your chest for at least a week or so, but this dumb bitch thinks she knows everything. I look at her and simply repeat,"We are done here."
It's not that I am trying to be a bitch myself, but quite frankly, I have had it, I am done, I don't have time to put up with nonsense and now I have the voice to say so. None of us should have time for things that are unacceptable for us, because life is precious. Who knew I would have lost some boobs but gained a pair of balls...watch out world here I come!
So then later in the morning the physical therapy team came in and educated all of us on the best way to get in and out of bed. They were great and compassionate. Because let me just tell you, even with a shot of morphine in my IV, I felt like getting out of bed and shuffling to the bathroom was some awful pain. I was pretty sure at that point that straight fire was running through my chest! Oh and the best part was that I had the 2 drains going to my fanny packed pain pump, and 3 drains running out of my chest with large balls on the end of about a 12 in tube each to collect the drainage from wounds. So, as I was shuffling to the bathroom with fire rushing pain through my chest I was trying to manage holding all my fucking balls and focus on breathing with tears streaming down my face I felt like the expanders in my chest were so heavy they were going to bust through my skin. Let me just tell you this was not a pretty sight for anyone. My mom and Lil Bit helped the nurses make my bed and pick up the room while I sat on the toilet and cried holding my balls, drains, and pain. Poor Sean, had to help me and watch me sit there and cry. He just kept petting my newly fuzzed head, wiping my tears and saying,"it will be okay, and that he loved me" he probably repeated that statement with each stroke of my head 50 times.
I made it back into bed, and the nice physical therapist said,"It will get better each time." In my mind, I thought, this bitch must be crazy if she thinks I am getting out of this bed anytime soon, I will go back to be humiliated on the bed pan! We all know that wasn't true and I did do what I needed to do to go home, which brings me to my next story of my hospital stay.
The next physical therapist arrives in my room to inform me that I would need to walk the hallway and the STAIRWELL to be discharged. Now let me just give you a mental image of this physical therapist. His name was Norman and he wore rather large and thick glasses, he appeared a bit socially awkward, he was maybe 5 foot tall and maybe weighed 120lbs soaking wet. Really, Really, they sent this guy to help me, I mean come on, one false step and I would crush this little dude! So I calmly look at this timid little creature standing in my room telling me I'm going to need to walk a fucking STAIRWELL, and say,"Norman, you have lost your damn mind if you think that I am going to walk a stairwell right now. I will be able to do a few steps and the hallway, but not a stairwell." I am pretty sure he may of pissed himself just a bit as he scurried off to see what the nurses and doctor suggest he do. He comes back a bit later and informs me that he has devised a new plan....great....this plan was more acceptable but there was still a huge potential that I might crush this little dwarf they sent me for physical therapy. So here we go shuffling down the hall, I was trying to just focus on my breathing and channeling my pain out that way, it really wasn't working but oh well, I wanted to go home. So we make it to the physical therapy room and I simply have to go up the "old people" 3 step stairway and back down then shuffle back to my room and Norman would be done with his task at hand, which I am sure he was grateful for, b/c I think I could feel him anxiously shaking as he walked next to me....he knew...I might crush him. So the steps, well let's be honest they sucked so bad. It hurt and again I was pretty confident that my breast expanders would bust through my skin b/c they hurt so bad. So it seemed to take me forever to walk those 6 steps, but I did it. I didn't complain but I had snot, and silent tears streaming my face. Norman graciously allowed me to be pushed in the wheelchair back to my room.
So then it was time for discharge. Here is the next story. They had to wean me off the IV morphine, but I still had the morphine pain pump to go home with. They were going to give me some pain medication in pill form in order to take as break through medication. My plastic surgeon was the one ordering what I would be sent home with. The nurse comes in to inform me that I will be going home with hydrocodone. For those of you who don't work in healthcare let me explain what she just said to me. I would be going from IV morphine to glorified Tylenol. Have they lost their damn minds...yes. Here is why, I explain to the nurse that during chemo and my Neulasta shots(bone pain) I was taking hydrocodone like M&Ms, so this was not going to work for me because they just cut my chest off and scooped out my right armpit so I would need more. I told the nurse to call the doctor and tell him this and get something different. At this time my best girls Kressy and Shelly arrive, who are both hospice employees, and get wind of what is about to go down. Those 2 girls stayed at the nursing station and advocated for me like nothing I have ever seen....okay I had seen it before b/c they advocate for their hospice patients just the same. In the end the plastic surgeon was set on me going home with the hydrocodone, and so it was.
So Shelly and my mom take me to the plastic surgeon's office as soon as I was discharged from the hospital so they could give us wound care instructions. Little did we know that the office closes at noon on Fridays and his nurse was there waiting for us. I was out of my mind for most of that ride and appointment. I will tell you this though. The nurse looked like she was 12 years old, it was hot as the devils ass in there, and I was going to be sick from pain and the heat. So I am laid out in this chair as she cuts the bandages off, I am not mentally prepared to look at my chest at this point, so I don't. Shelly is taking notes and Carol is patting me on the shoulder saying,"oh they look fine, they are "A cups". Carol said this repeatedly over the visit. Shelly was telling the nurse that my pain was not currently nor will not be managed with current medication, the nurse argued with her and refused to call the doctor again. At this point I was done. I told them I was going to vomit. The nice 12 year old nurse opens the window for me and hands me a 4x4x4 basin to vomit in. Really, Really, I thought to myself, listen bitch I hope I vomit and you have to clean this up....who in the hell gives anyone a 4x4x4 basin to vomit in....midgets/hobbits they vomit more volume than that! So I say again I am sick I am going to vomit. Without warning the 12 year old nurse literally sticks a smelling salt stick nearly up my nose. I looked at her and said,"what are you doing get that away from me!" She informed me that is was smelling salt to stop vomiting. I said,"well, if I wasn't going to vomit then I am now, damn. We are done here, Shelly, Mom get me into the car now!" And so it was.
More to come....
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