When the mastectomy was preformed the surgeons are unable to tell how many lymph nodes were infected with the cancer. The surgeons could only tell me that the tumor in my breast was about 7 cm and that there are 3 levels of lymph nodes in the armpit which she could reach and she took out levels 1 and 2. It would be a couple of weeks before the pathology report indicated how far the cancer had spread into the lymph nodes. The surgeon was confident she had been able to remove all the breast tumor and lymph nodes.
I had a follow up appointment with the breast surgeon in order for her to monitor my wound healing. She informed us that 12 of the 14 lymph nodes removed were cancerous. She then gave us the news that my cancer is now a stage 3. We were in shock.
I know that it is just a number, but it is not the number we wanted to hear. I cried and grieved all weekend. The next week I had a follow up appointment with my oncologist as well. Fresh from a weekend of tears and grief I didn't go into the appointment with a smile on my face. I was tearful and distraught. My oncologist spoke sternly to me, which was out of character for her, and told me that I can't worry over things that I don't have control over and that if my mind is not in the right frame then my physical body will not heal. Really, really, does she know who she is talking to? I, of all patients, understand the benefits of mediation, balance, but don't forget I am in therapy for my anxiety and control issues. I left that appointment with Sean driving and I was crying. I said,"what the fuck do they want me to do? I see a psychiatrist, a psychologist, and I have a fucking workbook my therapist gave to help me with my anxiety/control issues. Do they forget that I am a 31 year old woman trying to fit cancer into her fucking planner!"
The next day I signed up for a yoga class for chronically ill patients, which makes me feel like the cream of the crop in society. There is an organization called Turning Point, that is for chronically ill patients and their co-survivors that provides many different types of classes for free. So I looked at several different classes and signed up for a few. I ended up really liking the yoga and the Jin Shin Juysitshu. So when I saw my therapist that week I told her about the stage 3 news and my odd appointment with my oncologist. My therapist reminded me that even healthcare professionals have difficulty with seeing a young person struggling and maybe my oncologist reacted this way b/c she was trying to manage her own emotions. Okay, whatever. No I am kidding. I get it. I also get, that the day I was diagnosed with cancer everyone in my life got diagnosed too and we all carry it around with us differently and we all grieve differently and at different times.
So my therapist then asks me how things are going with the Anxiety Workbook. I said do you want my honest answer...of course she does. I say,"I feel like a fucking idiot!" I don't think that is the response she expected to get. I explained to her that I have a master's degree in this, I counsel patients to do these skills in order to cope. I am pissed that I have this fucking workbook. She explained to me that when going through college I was able to always view "them" as patients and that I could never be one of "them", yet that is exactly what I am. Awesome, I am pretty sure she just labeled me as crazy. We spoke of other things that day and I said several curse words, and told her I felt like a fire has been ignited within me and I have found my voice. Her response,"I know you are going through an angry stage right now, and you have the right to do that, but just keep this in mind....don't leave slaughtered bodies behind you." If I were unsure if she had labeled me as crazy before, I am sure of it now! I'm kidding, I get it, and I told her I am assertive, I am not a total bitch that no one wants to be around and that will not be my intention, but I'm glad she brought it to my attention with those words.
badass self is draped across the exam table. There is a nurse on each side of me and they tell me they will pull drains now. Before they begin to pull I say,"Let's be honest here ladies, is this going to hurt, I don't care if it is, I just want to brace myself." Their response was no it won't hurt, it's just going to feel weird. My response,"Okay with that being said, I want you to recognize that you have not restrained my arms, so if this does hurt there is good probability that I will reach up and choke both of you and/or pull your hair." I was serious. I scared them...they made a nervous laugh! I win! It didn't really hurt.
Sunday, May 29, 2011
Here's my voice!
So Shelly and Carol drove me home and Sean was waiting to help me inside the house. My prescriptions were filled, our big bed was prepared with nearly 20 feather pillows, and feather comforter. I had the nightstand with my pillbox filled, and any possible medical supplies I might need. I was drained, I slept for some time. The pain was getting to be unbearable and we all just kept with the plan the plastic surgeon had given us and I used my alternative therapies. We managed through the night. Saturday came and the story was the same. The plastic surgeon called my cell and Shelly answered it and explained that the hydrocodone, as we had told him, was not sufficient and this was unacceptable. His response was for us to meet him at his office as soon as we could. I have 2 things to say about this. Listen dick, you could have seen me yesterday on discharge and listened to me when I said this wasn't a good idea, and second dick, you can come to my house, your office is 20 mins away. We get me in the car and this time it was Lil Bit and Carol. Let me explain to you that the mere feat of getting out of the bed, down the stairs, and into the car would be nothing to the overwhelming pain I was about to feel with every turn and pothole on the road. I am sure Lil Bit was about to have a heart attack herself b/c with every bump the tubing from my drains rubbed against my raw muscles inside. And little do they tell you that with each drain there is about one foot of tubing "s"ed and circled around your chest to suck the fluid off. So to say that I was tearful, holding my chest, and breathing in a manor that would mimic childbirth by the time we arrived at the plastic surgeon's office is an understatement. We three had pre-determined that if the plastic surgeon did not listen to us or "fix" the problem we would leave his office and drive the few blocks back to the hospital that I had just been discharged from yesterday...that's how bad it was.
So the plastic surgeon meets me at the door and the first thing he says to me is,"you have to slow your breathing down or you will hyperventilate." My thought was,"Asshole you better fix this or your about to get a right hook!" His next statement was,"wow I didn't realize you were so tall" as if that were the reason why the pain medication was not sufficient. I have 2 problems with this. 1) I was on your operating table for 4 fucking hours and you didn't realize how tall I was nor my weight to prescribe medication. 2) I had seen you twice before the fucking surgery, wasn't like we just met, you idiot. Those thoughts were my pain talking....I pull it together soon...bear with me. My only statement to him was this exactly,"You either fix this now or I am re-admitting myself to the hospital because this is unacceptable." He quickly got on the phone with the pharmacy and got better medication. He then made some comments that made me feel like maybe I had a low pain tolerance or that I was maybe a baby about the situation. I didn't have the emotional or physical energy to deal with him at that moment, but his moment would be coming soon. Really, really, a fucking baby, do I need to remind everyone of the breast biopsy incident in November...if you don't remember go back and read it. Oh and do I need to remind him that I am mentally grieving many things right now, which includes but is not limited to MY HAIR, MY EYEBROWS, MY EYELASHES, MY BREASTS, potentially MY FERTILITY, MY INDEPENDENCE....do you need me to go on, you dick. We got the medication and left with his instructions to come back in on Monday.
And here comes Monday and I am of the right mind now because the medications he gave me worked. So I am sitting on the exam table, which I hate because you just feel like this weird piece of meat and/or that you could have some weird disease and should be kept at a safe distance from the other respectable humans in the office. Anyway, the nurses prepare me for the doctor to come in and see me. Oh let me just tell you about the nursing staff in a plastic surgeon's office. They all look like supermodels, dress in designer clothing, shoes, and jewelry, and appear to be aging backwards. Now with that said, let me paint this picture for you. I have just had my tits cut off, I am still fat from all the fluids retained from chemo and surgery, I can't move my arms enough to wear anything other than "old man" button down pajama tops and sweatpants, oh yeah and don't forget the bald head and eyebrows/eyelashes. So these supermodel, robotic nurses have my sexy ass out on the exam table waiting for the doctor, oh and telling me my wounds look great....really, really, that's what you think....you are lucky I don't bitch slap your supermodel ass right now....but I can't move my arms too well so I will have to rethink that. Okay, so doctor walks in, he is all happy and opens my gown up immediately to start the exam and says,"let's see what we have here." I immediately say,"No, we are going to talk for a minute." and I immediately close my gown back up.
Bahahahaha I win people!!!! I have found my voice and I know myself, so shit will get done!!!!
So the plastic surgeon meets me at the door and the first thing he says to me is,"you have to slow your breathing down or you will hyperventilate." My thought was,"Asshole you better fix this or your about to get a right hook!" His next statement was,"wow I didn't realize you were so tall" as if that were the reason why the pain medication was not sufficient. I have 2 problems with this. 1) I was on your operating table for 4 fucking hours and you didn't realize how tall I was nor my weight to prescribe medication. 2) I had seen you twice before the fucking surgery, wasn't like we just met, you idiot. Those thoughts were my pain talking....I pull it together soon...bear with me. My only statement to him was this exactly,"You either fix this now or I am re-admitting myself to the hospital because this is unacceptable." He quickly got on the phone with the pharmacy and got better medication. He then made some comments that made me feel like maybe I had a low pain tolerance or that I was maybe a baby about the situation. I didn't have the emotional or physical energy to deal with him at that moment, but his moment would be coming soon. Really, really, a fucking baby, do I need to remind everyone of the breast biopsy incident in November...if you don't remember go back and read it. Oh and do I need to remind him that I am mentally grieving many things right now, which includes but is not limited to MY HAIR, MY EYEBROWS, MY EYELASHES, MY BREASTS, potentially MY FERTILITY, MY INDEPENDENCE....do you need me to go on, you dick. We got the medication and left with his instructions to come back in on Monday.
And here comes Monday and I am of the right mind now because the medications he gave me worked. So I am sitting on the exam table, which I hate because you just feel like this weird piece of meat and/or that you could have some weird disease and should be kept at a safe distance from the other respectable humans in the office. Anyway, the nurses prepare me for the doctor to come in and see me. Oh let me just tell you about the nursing staff in a plastic surgeon's office. They all look like supermodels, dress in designer clothing, shoes, and jewelry, and appear to be aging backwards. Now with that said, let me paint this picture for you. I have just had my tits cut off, I am still fat from all the fluids retained from chemo and surgery, I can't move my arms enough to wear anything other than "old man" button down pajama tops and sweatpants, oh yeah and don't forget the bald head and eyebrows/eyelashes. So these supermodel, robotic nurses have my sexy ass out on the exam table waiting for the doctor, oh and telling me my wounds look great....really, really, that's what you think....you are lucky I don't bitch slap your supermodel ass right now....but I can't move my arms too well so I will have to rethink that. Okay, so doctor walks in, he is all happy and opens my gown up immediately to start the exam and says,"let's see what we have here." I immediately say,"No, we are going to talk for a minute." and I immediately close my gown back up.
Bahahahaha I win people!!!! I have found my voice and I know myself, so shit will get done!!!!
Feeling Physically and Emotionally Raw: My voice will be heard now!
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....
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....
Wednesday, April 6, 2011
8th and final chemo, my 31st birthday, and little angels
So my final chemo was on March 21st, my counts were just good enough for me to complete my final round. I was so happy! When the nurses made the announcement to the entire chemo room and presented me with my graduation certificate I had tears of joy streaming down my face! Another great thing happened on my final treatment. I was able to meet one of my other Young Survivor chicas that I had only been communicating with via emails. It was her final chemo treatment that day too. It was awesome to meet her face to face and give her a giant hug! Seeing other young women being strong and beautiful during their treatment definitely encourages me!
Completing chemo seems to have lifted a giant weight of my shoulders as well as Sean's. I know that I have more treatments, trials, and tribulations to conquer. However, there is something about not having to go every other week to prepare your body for the side effects and knowing that you will be weak, and bed bound.
I turned 31 on March 30th and I have never been one who gets too excited for birthdays, however, from now on I will be happy and grateful for the gift of each year of life and I will celebrate accordingly! On my birthday I was feeling emotionally and physically great. Sean took me to a nice dinner and I was even able to enjoy a bottle of wine with him. The best part was that we were able to laugh and get a glimpse of our "normal" life versus our "chemo/cancer" life we have been living the last 5 months. We had a great time, we laughed so much that night! For a bit more celebrating I requested that we all go camping, because I love camping and since being a captive of chemo and indoors for the past months I was yearning to be outside in the fresh air. When I say we went camping, I mean we rented a small cabin. We went to a small little lake outside Kansas City, which was appropriately named Lake Paradise! I am telling you right now it was the best time ever! We had a campfire, yard games, lawn chairs, and music! Our friends were there and of course my brother-in-law Ryan provided ample entertainment. We all laughed until our stomachs and faces hurt. Even on the way home on Sunday Sean and I were laughing hysterically about the whole experience! I really felt like the old Ashley and that for one night I didn't have breast cancer! To everyone that was there, you gave me the best birthday present ever!
Here is the little angel part....as we were sitting by the campfire we had some random other campers stroll by our cabin to say hello. In this group of other campers a girl approached me and asked me if I was Ashley and if I were the one who had breast cancer. She introduced herself as Nikki and that she was exactly one year to the day of completing her chemo for breast cancer. Nikki and her friend went with Lil Bit and I and sat in my cabin and spoke about our journeys. Nikki is an angel because she gave me hope that night. She graciously showed me her scars and gave me tips on "feeling normal". She was honest and open about anything I wanted to ask, oh and the weird thing is that she live in the same city and Lil Bit and she has the same oncologist as I do. Awesome! and what are the odds that we would all be there at the same time! I have another Young Survivor that is inspirational and another support!
So after battling the physiological effects of chemo and the steroids, my oncologist recommended that I seek a psychiatrist and psychologist for more emotional support. I agreed because I felt as though I was losing my mind and the effects of chemo on my brain/moods were not easy to live with. I have been in counseling for a few weeks now and I have really appreciated the support. The psychiatrist has provided me with medications to combat the steroid/chemo effects and the psychologist has allowed me to talk about all the emotions that I am going through. Mainly we have spoke about all the loss I have experience and anticipate losing because of breast cancer. I am feeling better and preparing for the next leg of this journey.
I am scheduled for my double mastectomy and lymph node dissection on April 13th. I have decided to have the plastic surgeon place the skin expanders at that time too, so it is one surgery versus two. I am trying to emotionally prepare for my breast to be gone. When they told me I would lose my hair with chemo, I was devastated. Now I have emotionally progressed to a point were I want to go bald, and I only wear my wig when we go out to were it would be more socially acceptable to wear it. Otherwise, I rock my baldness, I feel like,"Hell yeah I'm bald, I have earned it, going through chemo hell and back, what are ya gonna say!" I DID chemo, and I know I will DO this next step. I am prepared that it will take some emotional work to get comfortable with my body again, but someday I will feel comfortable showing some other young breast cancer patient my scars and telling her, "Hell yeah I did it and so can you!"
Completing chemo seems to have lifted a giant weight of my shoulders as well as Sean's. I know that I have more treatments, trials, and tribulations to conquer. However, there is something about not having to go every other week to prepare your body for the side effects and knowing that you will be weak, and bed bound.
I turned 31 on March 30th and I have never been one who gets too excited for birthdays, however, from now on I will be happy and grateful for the gift of each year of life and I will celebrate accordingly! On my birthday I was feeling emotionally and physically great. Sean took me to a nice dinner and I was even able to enjoy a bottle of wine with him. The best part was that we were able to laugh and get a glimpse of our "normal" life versus our "chemo/cancer" life we have been living the last 5 months. We had a great time, we laughed so much that night! For a bit more celebrating I requested that we all go camping, because I love camping and since being a captive of chemo and indoors for the past months I was yearning to be outside in the fresh air. When I say we went camping, I mean we rented a small cabin. We went to a small little lake outside Kansas City, which was appropriately named Lake Paradise! I am telling you right now it was the best time ever! We had a campfire, yard games, lawn chairs, and music! Our friends were there and of course my brother-in-law Ryan provided ample entertainment. We all laughed until our stomachs and faces hurt. Even on the way home on Sunday Sean and I were laughing hysterically about the whole experience! I really felt like the old Ashley and that for one night I didn't have breast cancer! To everyone that was there, you gave me the best birthday present ever!
Here is the little angel part....as we were sitting by the campfire we had some random other campers stroll by our cabin to say hello. In this group of other campers a girl approached me and asked me if I was Ashley and if I were the one who had breast cancer. She introduced herself as Nikki and that she was exactly one year to the day of completing her chemo for breast cancer. Nikki and her friend went with Lil Bit and I and sat in my cabin and spoke about our journeys. Nikki is an angel because she gave me hope that night. She graciously showed me her scars and gave me tips on "feeling normal". She was honest and open about anything I wanted to ask, oh and the weird thing is that she live in the same city and Lil Bit and she has the same oncologist as I do. Awesome! and what are the odds that we would all be there at the same time! I have another Young Survivor that is inspirational and another support!
So after battling the physiological effects of chemo and the steroids, my oncologist recommended that I seek a psychiatrist and psychologist for more emotional support. I agreed because I felt as though I was losing my mind and the effects of chemo on my brain/moods were not easy to live with. I have been in counseling for a few weeks now and I have really appreciated the support. The psychiatrist has provided me with medications to combat the steroid/chemo effects and the psychologist has allowed me to talk about all the emotions that I am going through. Mainly we have spoke about all the loss I have experience and anticipate losing because of breast cancer. I am feeling better and preparing for the next leg of this journey.
I am scheduled for my double mastectomy and lymph node dissection on April 13th. I have decided to have the plastic surgeon place the skin expanders at that time too, so it is one surgery versus two. I am trying to emotionally prepare for my breast to be gone. When they told me I would lose my hair with chemo, I was devastated. Now I have emotionally progressed to a point were I want to go bald, and I only wear my wig when we go out to were it would be more socially acceptable to wear it. Otherwise, I rock my baldness, I feel like,"Hell yeah I'm bald, I have earned it, going through chemo hell and back, what are ya gonna say!" I DID chemo, and I know I will DO this next step. I am prepared that it will take some emotional work to get comfortable with my body again, but someday I will feel comfortable showing some other young breast cancer patient my scars and telling her, "Hell yeah I did it and so can you!"
Monday, March 14, 2011
You know I am sexy with my wig and surgical mask on!
So the 7th round of chemo went much easier than the previous. The doctor and nurses were prepared with all the right medications in case I had another reaction. They gave me so much medication that I was able to sleep through most of the chemo session. We were still there for most of the day, Sean will never let me go without him again, and he patiently sat with me all day as I was tethered to the chemo pole and sleeping away. I was really tired and emotionally all over the place from the chemo and the steroids. I vacillate between crying and being raging pissed, so Dr.Rabe(oncologist) recommended that I go see a psychiatrist...appointment has been made for March 17th! I know I need to go, I am eager to seek the help. It is torturous to feel the chemical imbalance throughout your mind and body. Now I know what it is like to feel helpless and in so much emotional/mental pain that punching something or cutting would sound like a viable option....don't worry I'm not going to hurt myself or Sean, but this is the only way to explain it.
I continue to have about two days of body aches/pain within the week after receiving chemo, which is no fun, but just another part of this journey. I am focused on the next steps of this journey and that is my last scheduled chemo session on March 21st!
I had blood work done today, as I do every Monday, in order for the doctor to monitor my white blood cell count because if these go to low then chemo will be postponed until my body can withstand chemo again. Unfortunately, we found out that my counts are drastically low and that I have been quarantined to the house and away from people in order to avoid any infections. I had an appointment with the breast surgeon this morning and had to wear a super sexy surgical mask into the hospital, again to avoid contact with germs! I just hope that my body gets things together so I can have chemo on the 21st, I don't want to postpone it, I am ready to move on.
So the appointment with the breast surgeon went well. Dr. Ballanoff is completely confident that she can remove all the cancerous breast tissue and lymph nodes! She told me that I should only have to stay in the hospital one day if all goes well and that she has high regards for my plastic surgeon and radiation oncologist! She asked me how I felt about our fertility options after meeting with the fertility specialist in November. I think about it constantly. We desperately want children and with every chemo treatment I just sit and hope that there is a chance for us after all of this. Sometimes I think you know what Sean and I are good people and we deserve children and I will be crushed if that is a gift that is taken from us. So the next time you want to complain about your children or the daily tasks of life, stop and think what it would be like if you didn't even get the option. Be grateful for life! I told Dr. Ballanoff that in our opinion we will be so blessed to have children, but the other thing that weighs on my mind is that I will be blessed if I am a healthy breast cancer survivor with no recurrences too. I told her that sometimes I just wonder, will there be a day that cancer is not the center of my life, her response was honest, it will be a long time but it will happen. I told her that being 30 years old gives me, hopefully, a long life to worry about having a recurrence, again her response was honest, and she said that was true but if I can make it to the 5 year mark without a recurrence my odds will get better and better. Never thought I would be dealing with this at 30 years old. This journey is shaping my character and allowing me to appreciate things in my life that may have been overlooked a little more otherwise...there are silver linings when you stop and recognize them.
I continue to have about two days of body aches/pain within the week after receiving chemo, which is no fun, but just another part of this journey. I am focused on the next steps of this journey and that is my last scheduled chemo session on March 21st!
I had blood work done today, as I do every Monday, in order for the doctor to monitor my white blood cell count because if these go to low then chemo will be postponed until my body can withstand chemo again. Unfortunately, we found out that my counts are drastically low and that I have been quarantined to the house and away from people in order to avoid any infections. I had an appointment with the breast surgeon this morning and had to wear a super sexy surgical mask into the hospital, again to avoid contact with germs! I just hope that my body gets things together so I can have chemo on the 21st, I don't want to postpone it, I am ready to move on.
So the appointment with the breast surgeon went well. Dr. Ballanoff is completely confident that she can remove all the cancerous breast tissue and lymph nodes! She told me that I should only have to stay in the hospital one day if all goes well and that she has high regards for my plastic surgeon and radiation oncologist! She asked me how I felt about our fertility options after meeting with the fertility specialist in November. I think about it constantly. We desperately want children and with every chemo treatment I just sit and hope that there is a chance for us after all of this. Sometimes I think you know what Sean and I are good people and we deserve children and I will be crushed if that is a gift that is taken from us. So the next time you want to complain about your children or the daily tasks of life, stop and think what it would be like if you didn't even get the option. Be grateful for life! I told Dr. Ballanoff that in our opinion we will be so blessed to have children, but the other thing that weighs on my mind is that I will be blessed if I am a healthy breast cancer survivor with no recurrences too. I told her that sometimes I just wonder, will there be a day that cancer is not the center of my life, her response was honest, it will be a long time but it will happen. I told her that being 30 years old gives me, hopefully, a long life to worry about having a recurrence, again her response was honest, and she said that was true but if I can make it to the 5 year mark without a recurrence my odds will get better and better. Never thought I would be dealing with this at 30 years old. This journey is shaping my character and allowing me to appreciate things in my life that may have been overlooked a little more otherwise...there are silver linings when you stop and recognize them.
Monday, March 7, 2011
Feb. 22, 2011, sixth chemo, and genuine friends and family!!!!
Sorry, I am a bit behind, but don't worry Carol (my mom) took the opportunity to let me know that she thinks I need to update my blog more regularly. I'm not going to lie, it may not be too much more regular until I'm done with chemo, but I will try.
So on Feb 22 I had my fifth chemo, and it was rather eventful. It began with me having chemo on Tuesday versus the typical Monday, but the cancer center was too busy and they bumped me to Tuesday. Sean was unable to get off work to take me, therefore Mike (Sean's dad) took me. Since it takes so long for my chemo to drip into my body, I had told Sean that there was no sense in Mike sitting there with me all because it would be so boring for him. Sean was insistent that Mike stay the entire chemo, I think it is because Sean worries about me and wants everything to go as smooth as possible thus causing less anxiety for everyone. However, you know me and my amazingly stubborn ability as a patient, I fought him on the issue. It had nothing to do with Mike keeping me company, I love him and he is so easy to get along with, I just know that an 8 hour day tethered to a chemo pole is not my idea of fun and I didn't want to torture him either.
Mike took me and stayed until the chemo was running fine, my friend Kressy stopped by to smuggle me some soda and chips into the building...just kidding I could eat it she didn't need to smuggle it. The chemo had been running for some time and things were going well. As soon as Mike and Kressy left within about 15-20 mins I began to go into anaphylatic shock. It was awful, however, this is the exact reason that all the cancer patients sit in this giant room to get their chemo treatments. The infusion nurses can monitor a larger number of patients this way, in order to be prepared for adverse reactions. On a whole though there are minimal patients to no patients that suffer with adverse effects, until we all get home and then we deal with the effects.
So all of the sudden I felt really flushed, difficulty breathing, vomiting, and as though I was having a heart attack. The infusion nurses were working on me within seconds and the doctor was paged and they were all surrounding me and working on me. I could talk, and I was shaking as I vomited into this tiny bag contraption. I was scared. They immediately stopped the chemo from dripping into the body and began pushing all kinds of meds from syringes directly in to my port. As I sat there vomiting and unable to talk I kept thinking to myself, "Oh shit, Sean is going to kill me because he told me not to be here by myself!" Then my very next thought was, "if Sean doesn't kill me I am pretty damn sure I am dying right here tethered to a damn chemo pole!" And let me just say that during the chaos of my episode all the other patients were looking at me with that look on their face like, "oh shit, that's girl is having a reaction and two things, its bad and I hope that doesn't happen to me!" It was so quiet you could hear a pin drop! The medical staff were able to get my reaction under control and I passed out sleeping in the chemo chair. I woke a bit later with an uncontrollable feeling to scratch my skin all over, they had started the chemo drip again and I sat up in the chair to plan my attack on itching my skin. As I sat up and pulled my sleeve up I discovered I was COVERED in large hives. Right at this time the nurse happened to glance my way and she ran over and stopped the chemo again in hopes that I would not have another reaction. My eyes were not blood shot the whites of my eye were filled with solid red blood....let me tell you I was a crazy site, no wonder all the patients had those looks on their faces and were not making a sound. Again, they began working on me. I stabilized and they began the chemo again. I was at the cancer center from 9:30AM to 5:00 PM, it was an exhausting day for me. Let's just focus on that I survived.
The steroids and medications that they had to give me during this round definitely effected my emotional well being. I was vacillating between raging pissed to where I wanted to hurt something to uncontrolled crying. I jokingly had told my friend Shelly that if we were able to see each other that she could see me as long as she didn't give me any access to sharp objects! I felt and still do feel like I am losing my mind. The emotions are beyond my control and again I hate that! I think that going to the Young Survivor's Coalition meeting in March will help and I decided to make an appointment with a psychologist who works with a majority of cancer patients. However as the week wore on, my emotions kept get more out of control. I finally called the cancer center and my oncologist gave me a prescription to help. When discussing things with her, she informed me that the emotional mood swings were due to the effects of chemo on my body chemistry, the steroids, and the overall emotions of going through cancer treatment.
To help with my emotional well being I got to spend some amazing time with Lindsay and Sarah and we sat around and talked and had snacks on a Saturday night, the laughter was good medicine! And a little phone psychotherapy from Shelly never hurts, and I even got to see Cora and Kressy too!
During this process it is amazing to know you have some really amazing friends and family who are willing to put their own needs aside in order to support you! In the same thought process, it is amazing that you have some friends and family who you thought would have been more supportive and genuine. I just know that this process make me really appreciate the relationships in my life for what they really are, good or not so good. This also makes me think about how I am as a friend and how I can be encouraging and supporting to others in their time of need. People have made comments about me being strong, but I know I could not get through this rough journey without my amazingly loving, genuine, and supportive friends and family! I will never forget!
So on Feb 22 I had my fifth chemo, and it was rather eventful. It began with me having chemo on Tuesday versus the typical Monday, but the cancer center was too busy and they bumped me to Tuesday. Sean was unable to get off work to take me, therefore Mike (Sean's dad) took me. Since it takes so long for my chemo to drip into my body, I had told Sean that there was no sense in Mike sitting there with me all because it would be so boring for him. Sean was insistent that Mike stay the entire chemo, I think it is because Sean worries about me and wants everything to go as smooth as possible thus causing less anxiety for everyone. However, you know me and my amazingly stubborn ability as a patient, I fought him on the issue. It had nothing to do with Mike keeping me company, I love him and he is so easy to get along with, I just know that an 8 hour day tethered to a chemo pole is not my idea of fun and I didn't want to torture him either.
Mike took me and stayed until the chemo was running fine, my friend Kressy stopped by to smuggle me some soda and chips into the building...just kidding I could eat it she didn't need to smuggle it. The chemo had been running for some time and things were going well. As soon as Mike and Kressy left within about 15-20 mins I began to go into anaphylatic shock. It was awful, however, this is the exact reason that all the cancer patients sit in this giant room to get their chemo treatments. The infusion nurses can monitor a larger number of patients this way, in order to be prepared for adverse reactions. On a whole though there are minimal patients to no patients that suffer with adverse effects, until we all get home and then we deal with the effects.
So all of the sudden I felt really flushed, difficulty breathing, vomiting, and as though I was having a heart attack. The infusion nurses were working on me within seconds and the doctor was paged and they were all surrounding me and working on me. I could talk, and I was shaking as I vomited into this tiny bag contraption. I was scared. They immediately stopped the chemo from dripping into the body and began pushing all kinds of meds from syringes directly in to my port. As I sat there vomiting and unable to talk I kept thinking to myself, "Oh shit, Sean is going to kill me because he told me not to be here by myself!" Then my very next thought was, "if Sean doesn't kill me I am pretty damn sure I am dying right here tethered to a damn chemo pole!" And let me just say that during the chaos of my episode all the other patients were looking at me with that look on their face like, "oh shit, that's girl is having a reaction and two things, its bad and I hope that doesn't happen to me!" It was so quiet you could hear a pin drop! The medical staff were able to get my reaction under control and I passed out sleeping in the chemo chair. I woke a bit later with an uncontrollable feeling to scratch my skin all over, they had started the chemo drip again and I sat up in the chair to plan my attack on itching my skin. As I sat up and pulled my sleeve up I discovered I was COVERED in large hives. Right at this time the nurse happened to glance my way and she ran over and stopped the chemo again in hopes that I would not have another reaction. My eyes were not blood shot the whites of my eye were filled with solid red blood....let me tell you I was a crazy site, no wonder all the patients had those looks on their faces and were not making a sound. Again, they began working on me. I stabilized and they began the chemo again. I was at the cancer center from 9:30AM to 5:00 PM, it was an exhausting day for me. Let's just focus on that I survived.
The steroids and medications that they had to give me during this round definitely effected my emotional well being. I was vacillating between raging pissed to where I wanted to hurt something to uncontrolled crying. I jokingly had told my friend Shelly that if we were able to see each other that she could see me as long as she didn't give me any access to sharp objects! I felt and still do feel like I am losing my mind. The emotions are beyond my control and again I hate that! I think that going to the Young Survivor's Coalition meeting in March will help and I decided to make an appointment with a psychologist who works with a majority of cancer patients. However as the week wore on, my emotions kept get more out of control. I finally called the cancer center and my oncologist gave me a prescription to help. When discussing things with her, she informed me that the emotional mood swings were due to the effects of chemo on my body chemistry, the steroids, and the overall emotions of going through cancer treatment.
To help with my emotional well being I got to spend some amazing time with Lindsay and Sarah and we sat around and talked and had snacks on a Saturday night, the laughter was good medicine! And a little phone psychotherapy from Shelly never hurts, and I even got to see Cora and Kressy too!
During this process it is amazing to know you have some really amazing friends and family who are willing to put their own needs aside in order to support you! In the same thought process, it is amazing that you have some friends and family who you thought would have been more supportive and genuine. I just know that this process make me really appreciate the relationships in my life for what they really are, good or not so good. This also makes me think about how I am as a friend and how I can be encouraging and supporting to others in their time of need. People have made comments about me being strong, but I know I could not get through this rough journey without my amazingly loving, genuine, and supportive friends and family! I will never forget!
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