So I just wanted to write alittle update from me before many of you take off somewhere wonderful for Easter. I am jealous and hate you all! :)
The low point of my week was a meeting with a thoracic surgeon at the hospital on Thursday. I didn't know him and he had not operated on me. He informed me rather curtly that all he was there to do was check my incision. There was hardly a hello before he made me pull up my top and proceeded to tear off the little pieces of tape that had held my whole wound together. When I inquired about the pain I had been experiencing, he told me rather abruptly that he couldnt tell me anything about it or help at all and that I had to consult "another member of my team" for help. I quote him "I don't know anything about nerve pain." Really buddy? I find it hard to believe given that he is an actual doctor. And when I asked about capacity and working again he said I could work tomorrow. I was gobsmacked. I struggle to make it out of my bathrobe some days! Maybe I am used to my physicians exhibiting some kind of empathy towards me and my story. This guy however had no desire to find out anything except what my scar looked like. When I left the appointment, I was really angry and couldn't shake it for most of the evening. It just made me feel so small and insignificant. I would most definitely not want this person to be the one to tell me I had cancer! (Interesting side note - Norway is a small place. On a little shopping trip this weekend to find some new furniture I did actually see the doctor/surgeon who did tell me 2 years ago that I had cancer waiting in line at IKEA. Hello small world!) Upon further reflection, Thursday's events made me thankful for the most amazing doctors that I been fortunate enough to have on my team.
The high point (or rather points as it happened every day) was waking up to the pitter patter of my daughter walking down the hallway to our bedroom like clockwork at 7am each day. She would arrive laden with blankets, 3 monkeys, one doll, and some books. She would have a big smile when our eyes met and ran around to my side and hopped right in alongside me. She would tell me that I had to wake up because it wasnt dark anymore outside which I couldn't argue with really. We would cuddle and talk about how well we slept. And this morning she treated us to an impromptu sing and dance to Gangnam Style! It was in that moment that I realized that this was the favorite part of my day and one of the silver linings to my life. I forget about the pain, the tiredness and the cancer. For those 20 or 30 minutes each day, I am somewhere else surrounded by the people I love and just feel happy. Takes some of the sting out of the other "harder" parts for sure. And for that I am lucky.
My alarm clock of choice:
Happy Easter everyone! Go out into the world and eat as many Mini Eggs as you can. I know I will.
Wednesday, March 20, 2013
This is my third attempt this week to write a blog entry. The creative juices just aren´t flowing this week. I feel blocked. I feel tired. I just don´t feel that inspired to be honest. My life is not all doom and gloom of course but I am just kinda hanging out in this limbo land again and I don´t like it. When I think about where I was 2 weeks ago today (1 day post recovery and in trememendous pain) and then how I felt one week ago (readmitted to hospital and throwing my guts up), I am miles ahead and have improved so much. I can do lots more and actually feel that I am able to contribute in some way. It has also been so lovely having my mother here to look after me. I don´t know what I would have done had i been home all alone. Perhaps starved? Her mission is to feed me and get some meat on my bones and she has succeeded. I have an appetite again and ice cream is definitely back on the agenda. I also love the company and the fact I have someone here to talk to and be with. And there is this effortlessness that comes along with being with family. We never get too old to be looked after by our mothers do we?
Recovery wise it is a slow road my people. The surgeons warned me it would be unpredictable and I have not been disappointed. I had an especially bad day today and the pain just spiked. I felt like I was 5 steps back from where I was yesterday. Nothing could take it away and my softest tshirt felt like sandpaper on my skin (the joys of nerve pain my friends). I also keep having these nightmares that started after the operation. All the dreams focus around me being unable to breath - either through choking or water. I wake up out of breath and afraid. Only the stillness of the night surrounds me as I try to shake off my anxiety and get back to sleep.
I took a trip to C-Town today to see my oncologist (not the one I have written so much about but my head honcho one who runs the show down there). He is extremely good at what he does but he scares me. I am not sure why as he is quite lovely and pleasant. I am always afraid of what he will say and feel that there is no way i could totally lose it in front of him. I am always terrifyingly calm and put together when i see him...maybe he sees the cracks I try so hard not to show? Well unfortunately my pathology results (tests to confirm all the cancer was removed and the margins were clear) are not ready and we most likely wont know anything until after Easter. If you are not Norwegian - Norway shuts down for the entire week leading up to Easter including your neighborhood pathology lab. More waiting for me and after our chat regarding all possible outcomes, I don´t feel quite out of the woods. The goal posts seem to move constantly and I can´t keep up. I want it all to be over and I don´t want to worry anymore. I know I wax lyrical about how uncertainty is just an essential part of the cancer experience that you have to accept but god some days it sucks! My body is oh so tired of all this and I don´t have any more parts left to give. I have already lost two breasts, some ribs, some sternum, muscle, nerve, and my peace of mind. Before this recent setback occured, I was trying so hard to live life in the future and not be afraid to think long term. It wasn´t easy to think this way after having cancer. I remember booking that trip to Canada in January thinking - what the hell I will be fine let´s do it. And now I am 2 days away from what would have been our departure date and I am stuck in this cancergatory. We had to cancel it because cancer got in the way. I don´t want to have to continue second guessing decisions and wondering how I will be next month, next summer or next year. I want to close my eyes and jump off that cliff with not a worry in the world. But there are results to return, scans to schedule and appointments to make. Did you know I get nearly bi weekly letters from the hospital summoning me in to see this doctor, that specialist etc...And I am not exaggerating. We also got the keys to our new house over the weekend which was both exciting and terrifying. It all happened rather quickly at the same time that we found out I was sick again and I worried whether this was the right time. But my mother in law gave me sound advice and told me we couldn´t keep living life on pause mode. We had to start living and building our life again. We couldn´t wait around for everything to be just right or else we would be most likely waiting forever. I guess life doesnt wait for us or anyone. We also have to be willing participants. So we did it and you know what? If something doesn´t work, there is always some way out. I just don´t want to waste any more time waiting...
I wanted to make a special mention of how kick ass team OBB has been the last few weeks and months. The comments, the messages, the flowers, the gifts, the cards and the positive thoughts. With all of you around me, it is difficult to ever feel alone and I am astounded by the infinite amount of kindness that exists in the world and more specially within my circle of people. Opening the newspaper or turning on the tv, it is so easy to think that there is so much bad out there but I have been reminded of how much good there is too. I have been on the receiving end of it time and time again and for that I am lucky. So thank you.
Wednesday, March 13, 2013
This is my first post op entry back at my command center (AKA the living room) so as you can gather I am home again. It was so utterly wonderful to be reunited with my daughter again who picked me up from the hospital along with her grandfather. Apparently when she was told Monday morning she was going to see mama and pappa she furiously started packing up all her things and stood by the door dressed, back pack and jacket on - ready to go. How can that kind of love not warm you heart? I just held her hand the whole car ride home as she chatted on about everything she had done and learnt. She knew mama had been at the hospital but other then that I was the same person I was 8 days earlier as far as she was concerned. Though it is really nice being at home, I am glad I was in the hospital as long as I was. Home is comforting but it is much harder to relax and take time to rest when real life surrounds you. I feel the need to go sit on the floor with my daughter and try and play with her and her toys. I feel the need to help my tired and stressed husband with the dust and mess everywhere. I feel the need to be there. Who knew it would be so hard to just lie in a bed and just rest? Who knew it would be me that would be making it the most difficult to do? And I am experiencing real capacity challenges right now that I haven´t felt since the old C´Spa days. I have nothing in the tank, I have pain, the medicine I take to make me feel better wreaks havoc on my stomach and I am just so utterly worn out. I feel so sick and literally taking a walk up the stairs is taxing. I feel like a 90 year old woman right now.
But let´s look at the positives - as my oncologist put it yesterday to me " You have earned your one week post thoracotomy badge." Geez if you would asked me a few years ago if I would ever actually use the word "thoracotomy" in loose terms, I would have told you that you were mad. But this is my life now. Luckily I have some pretty amazing people who are along for the ride right alongside me. My mother in law came up with a great metaphor (or is it an analogy?) for my journey - she said it was like I was commanding this train. There were the people who were sitting up front beside me experiencing it all first hand, those sitting behind supporting me in different ways, those outside cheering me on from afar from the platform and the people figuring out how to make the train work faster and better. The image makes total sense to me and a common comment from many readers and friends has been that many of you have felt like you were sitting right along with me on this wild ride - feeling the shock, relief, fear, hope and every other emotion on the wide spectrum that is the cancer experience. My train is running low on gas right now and adjusting to its new structural design but rest assured I will be back and running well again soon. Let´s call it a "work in progress" for right now.
I had to mention something one of my "technical support team" said to me a few days ago. This is again the same oncologist who has really gone above and beyond for me. She took time to explain everything to my brother in law last week in Canada (who he is a doctor as well) so he and my family could really understand the situation. She came to see me every day I was in the hospital and spent the time to listen and talk to me. And she made sure I had everything I needed. A few weeks back when I was ill leading up to this operation and I went to see her, worried I would be to ill to operate, she sensed my low spirits and said "We are fighting for you. You need to know that and in no way are you a lost cause." Just hearing that awoke the inner warrior in me and I felt better. Again her support shone through when after getting home on Monday and feeling lost and overwhelmed, she told me this:
"I think it is easy for us docs to forget what a priviledge it is to be trusted by people at their most vulnerable, so thank you for your trust and confidence! You´ve figured out that I don´t believe in angel therapy or magic dust by now, but statistically every doctor has a few "solskinnshistorier" (English translation - happy success stories) and I´ve decided that yours needs to be mine!"
I was so touched by this honest yet incredibly hopeful declaration from my doctor. I just don´t think you see that kind of support often and oh god do I want to be that story. The one with the happy ending that she can tell others who are afraid or need hope. It was exactly what i needed to hear. A different kind of medicine.
So for now I am trying to take the time to rest and tell myself that everything else can wait. The dust will be here when I am better and my daughter is most likely just happy being with me. I don´t need to worry about anything else but getting better right now. And my mom is arriving tonight so that will be a big help. I am looking forward to her healing soups, back massages and getting some of my favorite things from across the pond!!
I also had a dream last night and it was strange. There were so many people in it from all walks of my life - I don´t usually use names in this blog but Charlotte, Dee, Lara, Steph, Rupert, Andrew, Angela, Marissa, Crystal, Janka, Elaine, Birte, Maija, Catherine, Valerie and many many more...you were all there. It was strange but nice and we were eating the most wonderful macaroons in the most amazing colours. Maybe it was the Oxy? Maybe it was the pain? Or maybe it was my subconscious´s way of reminding me of everyone who is sitting in the seats behind me supporting me as I try to navigate my way back to health.
Love and hugs,
Saturday, March 9, 2013
“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” - Khalil Gibran
I am finally checking in with everyone who follows the adventures of OBB. The keys are not being stroked as fluidly as before and I am strugggling sometimes to find the right word. The brain is slower, the body more fragile. But writing means that I am coming back faster and that the worst is over. I am now a whole 6 days post operative and I am managing well. I actually have enough energy to be bored of the hospital and its food of course which is a fantastic sign. But I have found that the recovery process is very unpredicable as I can feel one moment like I could most definitely go home and then a bad pain cycle rises up and I am reminded why it is best to be here.
So what happened? Well things went according to plan and there were no surprises which was definitely a good thing. They didnt take as much of some parts but more of others so all in all I am structurally sound now. I do have to say that the first night was one of the worst in my life. I was in so much pain and nothing seemed to take it away but instead pulled me into this crazy state of total confusion and drug haziness. I actually remember thinking I was in London. The nurses came in and out of my room constantly trying to give me some relief but there was none to be had. But when the sun started to rise, some of the pain let up. I discovered sitting was a far less painful exercise then lying down. I was then transferred to the medium level ward and was again very well looked after. Lots of pain killers and someone always there to help me move or sip a drink. After the first few days, things really started to get better for me. But the thing about this kind of surgery is that you can feel really good and then BAM! You feel like that darn bull kicked you smack dab in the sternum again. Because that is what it feels like - like a china doll who has been all smashed up. But out of all this pain and crappiness also comes relief. They took everything and then some and sampled everywhere and everything. The surgeons feel confident that the cancer has been removed. I am lucky. And you know what? My surgeon looked like he had stepped off the surf beaches of Sydney - definitely a smooth operator who my oncologist informs me is the new poster boy of thoracic surgery. So I was definitely in good hands. Now I have two more days in hospital before I can go home to my own bed. Being home will be nice and having my things around me will make me feel less like a patient and more like me. There will be a slow recovery that will require me to patient and not push myself too hard - neither of my strongest points. I wont be able to everything I want to do and I will need to learn to accept that...at least for right now. I also will see my daughter again who I miss so much. She came to visit briefly on Thursday and it was so wonderful to see her delightful face but it was so hard to not be able to pick her up and cuddle her as close as could be. She entertained herself by pushing me around in my wheelchair. WHen I told her that I couldn´t come home yet with them, her little face got sad and her eyes teared up and these big silent tears started to fall down her cheeks. God it nearly broke me. SHe understands so much but at the same time so little. When I went back to my lonely hospital bed, I just cried. So I look forward to being with her again - my little angel.
I also think Mr OBB deserves a pretty big round of applause as he has been by my side every step of the way. It is not easy just watching the person you love the most suffer and be unable to do nothing to take that pain away. But just knowing he was there eased some of my pain. It reminds me time and time again how precious he is to me.
Where do we go from here? Well I spend the following weeks recovering and I will also wait to get all the results back from everything they removed. I am hopeful we wont run into any more surprises. My nerves just honestly can´t take anymore curveballs. I feel tired this time. I remember writing a month earlier about how much the previous operation had wiped me out - but this time I feel really broken. It will take time to rebuild me and find all the pieces again. And I will need to learn to live with that dark shadow that I cannot seem to shake. Uncertainty. We have again done everything we can do to fight this monster. Now it is time to put our swords down, rest and hope against everything that we have won.
I want to thank all of you for the massive amounts of support you have given to me and my family during the last few weeks. It really matters and makes a difference. I kept telling myself everyday this week - Ok I need to get better so I can write an entry to let everyone know that I am ok. So here it is - perhaps not my most eloquent or thought provoking piece but an update all the same. Please everyone enjoy your weekend and make the most of each moment. Forgive those who need to be forgiven, tell those you love that they are loved, buy that amazing dress if it makes you feel beautiful, give someone a hug just because, and just appreciate the fact that you are living. Life is far from perfect and we all carry our own baggage and pain that can seem to much at times, but it is what it is so just remember to breath in and out (even if it hurts sometimes).
Monday, March 4, 2013
"Bravery is being the only one who knows you're afraid." Franklin P. Jones
So I am spending my last hour at home before we begin to make our way to the hospital to begin our second cancer journey. I am on edge, I can barely sit still, everything irritates me and I just don´t want to have to do this. Yesterday was worse. I was angry, sad and feeling emotions I could not quite define. I also got very sad news yesterday that one of my pink sisters had lost her battle with the beast. It was a total shock as she had only been diagnosed with a relapse in January and two months later...she is gone. Leaving behind a husband and three children. How in the hell is that ok? How can this sort of thing keep happening? So I am feeling alot of anger and animosity towards cancer and want to smash its little head into a million pieces. I have already known too many great women - mothers, daughters, aunts, cousins and friends who have left this world far too soon. It just isn´t fair. But that is cancer. It just doesn´t care. Rest in peace dear Vanja.
As I try to shake off the negative feelings of yesterday, I am trying to get myself battle ready for the big challenge standing in front of me. Today is the first step. Tomorrow is game day and I have to be ready. But how can I be when I don´t feel like it all? I just want to hide under the duvet until it is all over. Millions of worries are circling around my brain like a cyclone. I am terrified of them not finding a vein or picking one that is too small and it hurting. I worry about how I will feel when I wake up and what they will tell me they have done. Because my surgical plan is open ended right now. They really wont know how much they have to take out until they get in there. Nothing like alittle more uncertainty to add into the mix. I love not knowing what will happen! It just gives you that warm and fuzzy feeling...yeah not quite. So I have to be open minded and put my body in the hands of the skilled surgeons. Once the needle goes in and I fall into a deep sleep, I am no longer in control and I can let go. I will focus on the image of my family and the fact that hopefully when I wake up again all the cancer will be gone. You know this is the first time I have ever had actual anxiety over the operation itself - I am a surgical frequent flyer (words of my brother in law who is a doctor!) and have been through it all many times before. I have never worried about never waking up or of something going wrong. All I cared about was how much pain I would feel when I wake up. But it feels different today. This is not so routine all of sudden and there are so many unknowns. It makes me more afraid. I like plans and this one is just abit too vague for my liking.
When I think about all of this - it just makes me so angry that this happening. Why do I have to do this? Again? Did you that yesterday was my 2nd cancerversary - 2 years since I was first told I had cancer. When I wrote the entry last year marking this milestone last year, I never thought I would have to go through it again but here I am earning my 2nd survivor pin. I don´t want a frickin´pin - I want to be alive and healthy. I want to enjoy life. I don´t want cancer anywhere near me. Is that so much to ask for?
So this morning I kissed and hugged my daughter goodbye. It was so hard - I had to hold her extra close as I didn´t know when I would be able to cuddle and hold her like that again. It will take time for me to recover so I had to savour the moment. I will miss her so much. She doesn´t know where I will be but she knows I am with Pappa so I will be okay. And I told her she was going on holiday with her grandparents. I can tell her more when I see her again and when the worst is over. No need to cause her any undue stress or worry. I will keep her bright shining little face in my mind and the endless love I have for her in my heart to guide me through the next few days.
I hope to be able to update you all as soon as I am able to sit up and type on a keyboard as I am sure you will all be wondering how "Operation Bionic Woman" goes. But if you want to help at all - just send me some super hero powers and thoughts my way tomorrow morning. I know I will need them. I will continue to tell myself that I can do this, I am strong enough, and admitting how terrified I am is merely a sign of my bravery. Let´s do this.
Hugs from OBB