Not The Weekend We Had Planned

Warning - this is a long story. :)

Well this past weekend was meant to be one of celebration. I had finished my last radiation session on Friday and my husband´s best friend was getting married on Saturday up in the mountains. Everything seemed set for a child free weekend of fun and a glass of bubbly or two. But the gods of fate had other plans for us unfortunately.

I had not had the best of weeks leading up to this past weekend and had spent much of my time feeling exhausted, nauseous and hanging onto the toilet for dear life. The doctors weren´t sure what was going on but chalked it up to nausea related to radiation and general exhaustion. So perhaps I was being over ambitious going to this wedding but I so wanted to participate in something fun and support my husband as best man and of course his friend who served as "minister" for our own wedding. So we went for it and drove the four hours with our friends to this beautiful place in the mountains. I remember saying how I had imposed a hospital ban on myself for at least a month and wanted to reconnect with the world outside of those white sterile walls. Hmmm...had I tempted fate with those words?

So back to my story - the wedding ceremony was beautiful and I fought back tears in a superficial attempt to not ruin my eye makeup. Always the vain one! Afterwards four of us sat in a nearby restaurant waiting for the drinks reception to begin and I suddenly felt a pain in my left shoulder and chest. It came out of the blue and I remarked on it out loud. Not a big deal - probably some pulled muscle or nerve i thought. We made our way to the reception shortly after and chatted with everyone. A short while later, I was sitting at a table beside my husband and a friend and out of the blue, I felt very unwell very quickly. I felt hot and suddenly my heart starting beating a mile a minute and I thought it would beat right out of my chest. I felt I was collapsing and in all honesty, I thought I was dying. My immediate thought went to my father and I thought - "I am going to die the same way he did." Everything becomes alittle cloudy after that and I can´t tell you how long it took for my heart to stop racing. Next thing I was lying on the floor covered in blankets with breathing problems and I couldnt feel my arms or legs. I was so scared and my anxiety went to stratospheric levels which definitely didnt help at all. Luckily there was doctor at the wedding and she was truly amazing and brought me some reassurance. She actually reminded me of Dr Sunshine which helped calm me. The ambulance was called and now all we could do was wait. My body was shaking uncontrollably and I just didn´t know what was happening. My husband was my rock and kept it together so well - not showing a hint of how unbelievably terrified he really was. We were far from anything and that distance was scary. Then I found myself bein wheeled into an ambulance and once they had done enough tests to prove I was stable enough to make the drive to the closest medical centre, we were off. I remember hearing my husband on the phone in the front seat speaking to his father and also our daughter. She asked him if she could talk to mama and he calmly said that I was in the bathroom and couldn´t talk. I think we both had lumps in our throat at that moment.  Forty minutes later, we arrived at a tiny medical centre tucked away in the mountains and after reviewing my complex history, it was not long before we were put back in the ambulance and off on a 1.5 hour trip to the closest major hospital. I started to feel bit better then and the odd sensations were wearing off and I just felt so tired and just plain scared.  We pulled into the hospital and a whole new slew of tests began again. It was kind of funny actually - my husband looking so spiffy in his suit and me with no clothes on but a blanket, seeing as a cocktail dress and heels doesn´t quite lend itself to hospital examinations. We didn´t have anything with us and everything was in a hotel room 2 hours away including phone chargers and toothbrushes!

They began tests to rule out the obvious culprit - a heart attack. Thankfully there appeared to be no signs of that so next was a blood clot. It was then that I got to experience a whole new medical procedure that was so frickin awful! Ever get an arterial blood test? Guess what - it sucks eggs and I was lucky enough to get four attempts at getting a sample. They put a needle into the inside of your wrist until they get to an artery. The anaesthesiologist said it was of the more painful procedures - I can concur on that. I seriously started crying when they told me they needed to do it a third time. My body started shaking uncontrollably after every attempt and the problem is that if your body isn´t relaxed no blood will come out. It truly sucked but as my tough love husband told me at the time - they are doing this for a good reason to find out what is wrong so grin and bear it girl. When that test came back negative, I was sent to intensive care for the night and round the clock heart monitoring. It was 2am by the time we were settled and my husband and I were wiped out. We joked that no one could have picked a better way of getting out of a best man´s speech and that it was one hell of a wedding if one of its guests was in intensive care before the dinner even started! Always gotta find the funny side of everything. So by morning, my heart had been stabile and instead of being picked up by our friends to go home, we were told we were taking another ambulance back to Oslo to be admitted to my "home hospital." The fun continues...So a 2 hour trip and another assessment in Emergency, we found ourselves back in C-Town again. At least it was familiar and all the nurses and doctors knew me and I felt especially pleased that I was not there to get chemo this time. After a good night of sleep, it was time for a round table with the doctors to figure out what the hell happened. They wanted a ultrasound of my heart to rule out damage from treatment but we were most likely looking at an unexplained and spontaneous panic attack. I am happy that it was nothing serious but I can´t help but be afraid of it happening again. I wasn´t worrying about anything, I wasn´t thinking the worst case - I was just trying to be normal and enjoy life. I keep thinking about it happening when I am alone or with my daughter. What do I do? I already felt so vulnerable already and with this latest episode, I feel even more so. I just want to get on with life and stop taking it easy and stop being afraid. My husband and I just don´t need anymore right now. We are at the max of what we can manage and the stress of it all takes its toll. One emergency after another it seems. I kept thinking that I needed to write a will while lying in the ambulance. That I hadn´t organised everything I needed to and no one would know what I wanted. It doesnt get more morbid then this people but even as the dust has settled and I am better now, I still feel the same way. No one knows what is going to happen - regardless of being healthy or sick. Maybe doing something like that will just make me feel more safe and secure. I was a girl guide after all and wasn´t our motto " Be Prepared"?

So after the last few days, I am forced to take the next week to rest and not do anything. My body has clearly sent me a message that enough is enough. I have to listen to it. I gueAnd seriously universe - can you please give my husband and I some kind of break? We just can´t handle anymore right now and just want a few moments together where we can forget about all the bad stuff. So we can just be. I think we more then deserve at least an evening???

Long story I know but it was a long weekend. And I want to congratulate Hege and Halvor on their happy wedding day. I so hope that our crisis didn´t take anything away from your special day. We are so happy for you and hope to properly celebrate with you both soon.

Love,

OBB

Dream Big or Go Home

“No matter how your heart is grieving, if you keep on believing, the dreams that you wish will come true.” Walt Disney Company
 
 

I am now 7 sessions away from finishing radiation and I think I can truly say that I am in the final stretch now. But I don't exactly feel that surge of energy that runners talk about when they start to make out the finish line. I am feeling quite the opposite really – utter exhaustion. I had been doing so much the last few weeks – enjoying life post chemo and feeling good. Gone were the sweat pants replaced with skinny jeans again, the blowdryer came back out to play and makeup become mandatory. I was feeling really good and people were noticing. Many people talked about me having this glow about me again and it made me feel positive because maybe it meant I was turning the corner because sick people just don't glow do they? But as the days passed and my skin grew redder and redder, the energy levels dropped. This past weekend I got home from a full day of activities and just couldn't move. My body forced me to realise it was running on empty when I woke up Monday with a pounding headache and couldn't stop throwing up. It wasn't the flu – it was my body's way of telling me it needed to stop and rest. I totally panicked though and started imagining horrible things while sitting alone in my living room trying to figure out who to call and how to get myself to the hospital for treatment. I sometimes imagine myself collapsing out of the blue and how I would get help. You could say there was some definite catastrophising going on. I burst into tears at the hospital that day and the technicians were quick to notice my messy hair, ashen face and sweat pants. I was not myself. You could say that again. I felt safer when my husband arrived...less alone, less vulnerable. We discussed things with them and decided that driving myself to and from the hospital every day was proving too much for me so alternate arrangements needed to be made. If I think back to the last time I did this, I did have a breakdown at the same exact point. That is how radiation works – it starts out slowly at first, unsuspectingly sucking little bits of energy here and there, but with every week the momentum increases until you feel on the brink of collapse. I have found myself here this week and I need to listen to my body. I have to be strict with myself - only doing the most important things and allow my body to rest every single day which is something I find so difficult to do. There is so much living to do out there and the thought of wasting it in my bed just feels so useless. But my body is resisting so much more this time and every morning I wake up feeling worse with literally every part of me aching down to my knuckles. I feel like a 90 year old woman most days. I know it isn't forever and I need to remind myself this is temporary. But god is this hard.

Yesterday I got distracted from my primary cancer and found myself at another hospital for my “other” cancer screening appointment. It is so difficult to worry about so many body parts that are seemingly ticking time bombs. One cancer is stressful enough! I had forgotten about my other threat the last 6 months with everything that had gone on but reality came racing back to me again. I always make jokes with my doctors and this serious German one was no exception. I think she was surprised by my upbeat mood considering the gory details that she had just read in my journal. But that is how I survive – it is my way of continuing on this long lonely road. I joked that I was running out of body parts to remove! Cancer patients are permitted to have fairly morbid senses of humour. I told her how I lucked out and ended up with the full cancer spa package as well – lucky me can they throw in a pedi as well? When we got down to business, we talked through things and she brought up the discussion of my ovaries again. “So what discussions have gone on regarding the removal of these?” she asked. Hmmm....simple question long answer. What I said next came straight from my heart, from that place where hope still lives. I told her that we had discussed this is exhaustive detail many times and that I had fought my oncologists to keep them in longer. I had the support of some of the specialists who believed there was no urgency for now and that making a young 33 year old woman menopausal potentially held greater risks. I explained that I was fully aware of the seriousness of my situation and my absolute first priority was to stay alive. However I still had dreams and in those dreams maybe just maybe one day I would get the chance to bring another child into this world. I almost feel naïve and silly saying this out loud considering I have been fighting for my life but like I said to the doctor – I need to believe in the future and in doing so I also need to hold onto my dreams because they are the things that keep me from falling into that deep dark hole. If I don't allow myself to dream then what the hell is the point of living? I just wasn't mentally prepared to close that door forever. She nodded and told me she understood where I was coming from. I think I shocked with my honesty but after being in this cancer game for so long, I realised that you just can't waste any more time beating around the bush. Honesty is everything.

I told her I needed time. Time to process things, time to make decisions and time to recover from all these traumas. I told her I was imposing a 4 month cancer break on myself when I finished radiation. I don't want to set foot in a doctors office until the New Year unless I absolutely have to. No scans, no bloodtests, no controls. I need to step out of this world for a little while or I am afraid I will drown under the pressure of it all. There is so much riding on that next scan for me. My life is depending on it so I need time to prepare for that moment when I will need to be the bravest and strongest I have ever been. And when was a holiday ever a bad idea? :)

OBB

Once a Soldier Always a Soldier

I need to talk. I need to write down all the things running through my head today, yesterday and last week. It seems like the last few days my brain has kicked into overdrive and there is a fire under my feet. I have come up with all these ideas that i want to do of all of sudden which most likely coincides with my body actually starting the healing process from chemo.   Instead of coming up for air this week after another hit of poison, I am just simply coming up for air. I decided I wanted my doctors to apply for me to go away to a rehab centre (not the drug kind where Lilo would be my roomie) after radiation so I could actually take a chunk of time on my own to focus on getting better. The thought of two weeks away from my family feels like a long time but it is about time I prioritised my health and for those of you who are parents, you will understand how easy it is to put yourself second, third, tenth...Right now I actually don´t want to take the proper time out of my day to rest as there is always something else I want to do that seems much more interesting. I actually loathe taking naps and sitting watching tv all day which is pretty much what one days while sick. I have also been thinking about when and how I will return to work as that is something else I feel i need to sort out. I have no idea how my body and mind will react to that change but I am itching to make at least a plan. And then I decided I needed a physical change and I had this urge to want to dye my hair...blond. I didn´t stop there...I also made some calls and found out how i could participate as part of this cancer charity in the Oslo Marathon next month. Ok I am not totally crazy people - I am not actually going to do a marathon. I want to try and do the 10K distance and I would be walking which will be a big enough challenge. I relayed all of these things to Dr Sunshine yesterday and quizzed her about each one and whether they were all possible. Questions ranged from "Will my hair fall out if I dye it now?", "Can my body handle a 10K walk now?", "When is best time to go back to work?" and "When will my legs stop aching"? Her response was simple. Wait. She told me to wait a few months before I did anything dramatic or that constituted a big change. My impatience and desire for change was common for people in crisis, she told me. Crisis? Who me? I am as cool as a cucumber! To be honest I am even struggling to stay focused enough to write this entry out as i am actually itching to get on with the next activity. I think a big deep breath is in order...for everything. I do think she is right and let´s face it, she has been right most of the time. I have been in crisis for over 2.5 years now and my body is recognising this hyped up crazy feeling as normal. I even feel it when I have a near fall on the steps, when my daughter trips down a hill, when I nearly drop a plate or someone brakes suddenly in front of me - I feel this jolt and shock of energy-like pain ripple through the right side of my chest. The side that held my dark passanger. It is a new sensation but I clearly recognise it as anxiety and stress. It is like my body has adapted into this kind of soldier on the battlefield - always alert and ready for the next attack. Being enemy ready also makes it impossible to ever truly relax. And I constantly feel like I have to face different fears on a near daily basis. The problem is that I don´t know when the enemy will retreat forever. I don´t know when I will be allowed to put my weapon down and walk off into the sunset without looking over my shoulder again. I so want the relief of knowing it is well and truly over. So i guess jumping into all these things could be my way of dealing with this ongoing Cancergate crisis - distractions that allow me to get some kind of control back in my life. Because unlike the cells in my body, I can control my recovery and rehabilitation. I can go to physio to get stronger, I can do yoga to settle my mind, I can get enough rest to allow my body to regenerate, I can eat healthy clean food to provide the right fuel to move forward and I can dye my hair whatever colour I fancy...these are things I can do. The real challenge lies in letting go of those things that I have no control over and just continuing to live my life one day at a time.

OBB

Musings from the Radiation Chapter

I have now completed four sessions of my new full time job - the 2013 radiation project. In case some of you aren´t familiar with the whole radiation dealio (or rads if you are more intimately acquainted with it), I can fill you in.

So radiation is meant to be the final clean up act following chemo and should kill off the cancer cells that were weakened by chemo. That is definitely my preferred game plan and I try to channel it by whispering during every rads session, "Die cells, die!" God I hope they are listening. The thing about rads is that the actual process of lying down on a very uncomfortable table resembling a spinal board and having this radiactive beam shot at you is completely painless. I still half expect to feel some kind of pain when the huge ass machine starts wizzing around me and I can almost visualise this bright yellow beam reaching into my chest wall seeking out the enemy. But of course radiation is invisible. The process for me is 25 sessions every day with the exception of weekends. So you see - it really is like a full time job and equally as exhausting. One of the main side effects of rads is fatigue so naps become daily protocol. I found myself feeling quite anxious about it all when I showed up on Monday for round 1 as I felt kinda in the dark about the whole thing. The last time i did this, I felt prepared and my network had informed me of what to expect, how to treat side effects and what would happen longer term. But this round 2 (similar to my chemo regime) was uncharted territory as my doctor said. They genuinely couldn´t really tell me what would happen and we would have to deal with things as they came. The radiation tech gave me a mini anxiety attack by telling me that we would need to see how things go and if I started to develop open sores we would have to consider stopping. Awesome! Welcome to leprosy island folks. There is so much worry in this game and I hate not knowing what will happen and pondering all the possible scenarios. And you know what? There is this screen on the ceiling in the rads room that lights up when the machine is on and goes dark when it´s off. The scene on the screen is straight out of the rainforest filled with lush greenery. I am guessing this tranquil scene is meant to distract and relax you however I could not help but notice that a number of leaves had burn marks on them. It made me think of my own skin sizzling under the radiation beams and definitely didn´t leave me feeling at peace. Now it is all i can focus when I am lying there every single day...burning. Oh the places our minds go.

So as I continue to get the job done, my mind is already focusing on the future and what will happen next. The plan is to finish the radiation, wait three months and do another PET. That scan feels so ominous to me and holds so much hope and fear tangled all together. I want to believe it will be okay and that I will be free from this monster but I find it so hard to think that way when everything has gone so terribly wrong. In the last two and half years every time we have been given two possible outcomes, we always have ended up with the worst one. When will our luck change? I seriously need about a million four leaf clovers, a thousand horse shoes and a pot of gold at the end of my rainbow. Do you think they deliver? :) It just all feels so final right now - we have done everything we can again and now we have to wait and see what happens. There is so much helplessness in the situation and so much fear. I am so damn scared of that monster under the bed. That it wont disapear when I turn on the lights again.

OBB

Too Busy for Cancer

Hi Everyone,

I realise again that time has escaped me and it has been weeks since I wrote. I think summer is such a busy time and having my monkey at home full time really makes it near impossible to find time to write. I have never been able to just sit down with distractions all around and write something worth reading. So I am trying to write today despite the multitude of things happening around me and give you an update. I know how many of you interpret my silence as something bad so I don't want anyone to worry.

What has happened since round 4 concluded? Well I am still trying to find my "normal" and am realising what a number this chemo has done to me. Every day I wake up, it is a lottery in terms of how I will feel. Some days are better and others awful. I honestly feel my body screaming out in protest to the abuse it has been through. My stomach will never been the same again and the tiniest imbalance sets it off. It makes it hard to make plans as I dont know what the day will bring. I think my daughter is really picking up on what is happening with me as she has said to me quite often (in an exasperated tone) "Mommy - you can't lie down and rest all the time! You have to be with me!¨ Her playing has also evolved and she informed me earlier this week that the mud concoction she was making was in fact medicine to make my tummy feel better. Bless her little soul. I love her so much and she continues to make me push myself to be here...living in the present and hoping for the future.

My doctor called me last week with the update from the CT planning session which was to determine whether I could get anymore radiation. If you remember, we tried to do this back in February but it was deemed too dangerous at the time. You know it is funny when I think back to the beginning of chapter two when we were told it was cancer again. My doctors gave me three possible treatment options and we would give me the best and safest option. But now nearly 4 months later, I somehow ended up getting all three things - surgery, chemo and now radiation - lucky me...not! Yes my doctor has found a way to give me more radiation. Perhaps it is due to time passing and more healing happening from my initial radiation or the new organic material they put in during the operation. Whatever it is - I am starting 25 sessions of radiation in a week and half. It will suck big time as my skin is still so sensitive and I will burn more easily then before. When I asked about the risks involved, he told me that the risk of not doing it outweighed the potential side effects I could get. And the side effects are potentially major but we hope I get lucky and dont end up with necrosis (this is essentially tissue death and can be very serious) or god forbid another type of cancer. He also told me to not bother googling anything about this as it was new territory and there was little to no literature on it. He knows me so well! I joked about how my case will make a great paper one day for them to publish. He laughed and said that they never saw me in that way - as in a patient and an opportunity for publicity. But I reassured him and told him I was more than happy to be a part of the future - a part of furthering research in this specific area of breast cancer treatment. I want my story to help others and make a difference somehow. What he said next surprised me so much as he has always been incredibly conservative in terms of what he has told me about my situation. He has been the harbinger of bad news for so long and I know it is impossible for him to promise something he has no guarantee on but he told me ¨I will look forward to publishing something about how I cured you.¨ I was so shocked by his words but they provided such a comfort to me and gave me hope. Hope is everything to a cancer patient and feeling that your doctor believes in you can help you get through the darker times. So I will face the next hurdle as best I can and try to imagine a time when cancer might not feel like such a big part of my life. A time when things will be different for me...a better life far far away from cancer island. Like I said - hope is everything.

Hope everyone is enjoying summer. We are seeing lots of sun in Norway. Me likey alot.

OBB xxx

Goodbye 2011

“When you have completed 95% of your journey, you are only half way there.” Japanese proverb.

Hello everyone,

It is OBB checking in with 4 radioactive sunbed sessions to go and feeling decidedly “uncomfortable.” My skin is burnt now and red all over but that is not the worst part – the itching! OMG – it is driving me crazy and I can’t do anything about it. I have literally smothered myself in the one cream I am allowed to use (no fats or oils for me) and staying hydrated but nothing helps and every day it feels worse. Bit annoying for me and I am currently drugging myself in order to be able to fall asleep at night. And I know it will have to get worse before it gets better so I am feeling a little demoralized today! In some ways this is harder than the last round of chemo as I just wasn’t so “uncomfortable” nor were my side effects as visible as this. In addition, having a monkey of a 2 year old running around me when my skin is as fragile as tissue paper makes thing that much more challenging. But I do tell myself that this will all be over soon and I just need to tough it out for that extra bit longer.

So with only 4 days left of my main treatment plan to go, I have been thinking a lot about the last year and also the new one that is just around the corner. Wow it is mind blowing to think about all the things I have done – the fears I have overcome, the strength I never knew I had and the journey I have walked, at times perhaps crawled through. I started the year with cancer in my body moving at a swift speed invading my cells and my body - undetected by anyone or anything. Now 12 months later I am in theory cancer free now and have undergone one the most grueling medical treatments out there. I think the most important thing to remember is that I am here. That is a victory in itself. But in other ways I am fearful of the next 12 months that lie ahead of me. Now that we have done everything we can do to fight this beast in my body, we must now put down our weapons and wait. I of course think positively and want to imagine only the happiest of outcomes but the reality of the situation now is that I am no longer in control. No one is. I need to put faith in my treatment and hope that my body responds the way it needs to and I remain free of this poison passenger. I think in some ways the first year post cancer will be the hardest and often reveals the true personality of your disease. After such a hard year one cannot even fathom the possibility of hearing those three words again and I never ever want to hear them again. Once was more than enough thank you very much. I have so much and so many people to live for. So I must accept my lack of control over the situation and assure myself that I am surely due some good luck. I have never ever felt such a strong desire to be alive in my whole life until now – when there is something that poses a threat to something we often take for granted – you are changed by it. So though it has taken every ounce of courage, bravery and strength to get through the last year, I know it will require even more pink power to get me through the next one. Then, maybe, just maybe I can exhale and breathe a little easier.

Here’s to a year that taught me who I really was and here’s to the coming year that will show me who I can become.

Love,
OBB

Sometimes I Get Angry

Hi Everyone,

It has been a busy week for me thereby making blogging updates a bit more challenging to do. Between visitors, my daily radioactive sunbed sessions and a sick child - I guess a bit of real life has been getting in the way but I am here and ready to dish.

So I am officially half through radiation as of this morning and doing alright. I now affectionately refer to it as my radioactive sunbed as it sounds much better – in my mind at least. I can pretend I am working on my “base” for a sun holiday on some exotic island. I can blissfully ignore the fact that I am actually going to the cancer center every morning rather than the Canary Islands and sipping green tea instead of a pina colada! Every day I ask my radiation technicians how my skin is faring as each day it is getting redder, tighter and more sensitive. “Is it more red then most people?” or “Are you sure my skin can handle 13 more times?” I think I always think I am abnormal however I am assured that everything that is happening is completely normal. It is quite like a sunburn and every time I lie there watching the machine swirl around, emitting beeps every now and then… I still expect to feel pain. But of course I don’t. I try and imagine the rays zapping any stubborn c-cells that could be lingering and see the cell imploding on themselves like dead stars do in the sky. Radiation is easier then the C-spa but the daily commute is tough and I am really finding myself lagging in the energy levels.

I am also still struggling with my new pills which are still giving me lots of issues. I saw one of the on call doctors this week to tell them about all my side effects and they told me I had to tough it out! I actually was unlucky enough to get the one doctor who didn’t speak English so the two of us struggled through a broken conversation about my symptoms. I guess my Norwegian is better than I thought as I clearly understand her tough love approach despite the language barrier! But I continually tell myself that I am lucky to be able to take these pills (as not everyone is able to) and they provide another line of defense against my dark enemy.
I am also now sporting a baby Mohawk this week and was able to buy an actual hair product today! It was exciting to say the least and I am now planning on coloring it this weekend. It will feel so good to shed the wig and just be me again.

Aside from that, I have been feeling a different emotion this past week that I don’t tend to feel that often or write about. Through my C-story, I have been careful to control and think about everything I say or feel. I have tried to live each day with courage, positivity and acceptance. I realized early on that I couldn’t focus on my life pre-C or wish I never got cancer because these were things I had no power to change. It would only frustrate me to battle the what if’s so I fought to focus on today. But I am feeling angry these days. If I were to think of my emotion in terms of the Kubler-Ross model – anger seems to be only number 2 in the five part grieving process so it appears I have a ways to go. I had this urge to want to smash a crystal vase a few days ago (though the mother in me even thought against it in my fantasy world as how could I ensure I picked up all the shards so as to not endanger my child!). I have also wanted to scream out into the wind and just let some of this anger go. I am angry at the situation I have been given, I am angry at the challenges that still lie ahead, I am angry at the fact I cannot just focus on being a mother and a wife, I am angry parts of my body have been taken from me and I am angry at all the things that I have been robbed of. I know I can’t change things and I rarely spend energy thinking this way but sometimes just sometimes, I long for that woman…the naïve yet fun loving one with the long brown hair, two pert boobs and a big smile who had the world at her finger tips and didn’t know what real suffering meant. I am still that woman – as I am sure many of you will say – but sometimes it just all feels unfair.

So that is a abit of where my head is at this week – just writing about it already makes me feel better and releases some of the tension. The best thing to do is recognize the emotion and then let it go so I am acknowledging and moving on.

Your friend,
OBB

The Final Phase

I first wanted to thank you all for your comments on last week’s blog. I think it garnered the most attention so far. Looking back on my entry a week on, I do see that I was probably not looking at the whole picture and instead “catastrophising” slightly (bad habit of mine!). My husband even gave me new information that I missed in the appointment! I think once you hear one bad thing, you can sometimes stop listening completely and the selective hearing kicks in. I also wanted to say that 36 is not too old to have a baby! Just that if I needed to lose my ovaries at that age, it would prove challenging however many of you have shown me that nothing is set in stone and there are still options. So thank you for your support!

I will not fear that which I can’t control.

This is what I have been repeating to myself over and over again each day through the last week or so. It has been a busy week full of major events, emotions and news. Friday was a huge day for me as I had my last trip to the C-spa. It was a great day and my daughter joined us for the special day. The cake went down a treat and the nurses were so touched by the gesture. They even put out a little Norwegian flag on my table to mark the milestone. I actually couldn’t believe when my infusion was over. It almost went too fast – I wanted to stay in this moment. Every other time I would always ask how much longer, when can I leave, how much is left? But today of course I was so thrilled to finish this part of the treatment; however I was a little sentimental about saying goodbye to the nurses and to the routine that had been my job for so long. They all said they would miss me too! There is also a slight niggle in my mind that I try to suppress as well. There are no guarantees in life and I almost feel like I am tempting fate by saying I will never have to do this again. Because the truth is going through chemo again is something I don’t want to think about but with this whole cancer business – there are no guarantees, just hope. So I hope I never have to see the C-Spa again!

Now it is Monday and the first week of my post C-spa life. How does it feel? Well not too much different as I am still very tired and have developed some strange fingernail pain and soreness. Am hoping my fingernails aren’t thinking of jumping ship especially now that I am finished and my eyebrows seem to be thinning more each day. I have been lucky I know by the fact that I still have some eyebrows and eyelashes left! And my hair is growing fast though the recent drug has ensured the top stays thin and yucky. I also have been able to see what my real hair colour is after having it lightened since I was 12 and it isn’t pretty folks. It is a grayish mousey brown mess and I plan on dying it as soon as I have enough hair! I am also hoping a month from now I can start sporting a Mia Farrow “Rosemary’s baby” style as I am sick of my wig!

So what happens next? Well next week I have some planning sessions with the radiologist where they plan and map out where they will zap me with the radiation. I am then a free agent until November 17th when I begin my daily radiation sessions. What to do with my time? Well my husband and I are having a child free weekend this week courtesy of some wonderful grandparents. It is actually the first time we will have alone together since I was diagnosed that wont involve an operation or cancer treatment! I am looking forward to going out for a meal to a restaurant that isn’t child friendly, sleeping in, getting a massage, and of course having some champagne! I am also preparing to give a talk to some nurses training to be cancer specialists next week. I will tell my story and discuss my involvement in this health and wellness project I have been participating in (what I refer to in the blog as Cancercise). I am attempting to do half of it in Norwegian so quite a lot of prep work will be done in the coming week. I will also be getting the results of my genetic test shortly and it is weighing on my mind considerably. I have a feeling about it but regardless of the outcome, I will just do what I do best and get on with it. There is some peace in knowing and not living with uncertainty.
So the next and final phase of this long ride is fast approaching and I am inching closer and closer to the end. I am realizing how much focus and strength it will take to transition from patient to person. Thank you for reminding me that I am still the same girl you knew last year, five years ago or even 15. I never want cancer to make different from who I was and who I am but as I have said before, just better.

So I will end with a special quote for everyone who has been there for me through this roller coaster ride through visits, emails, phone calls, cards, flowers, care packages, comments on the blog and FB…the list is endless. I am so lucky to have such amazing people behind Team OBB.

The greatest healing therapy is friendship and love. Hubert H. Humphrey, Jr.

A Sentimental and Appreciative,
OBB

A Slight Curveball

So here I am 3 days before my final c-spa trip fighting this cold that I have had for about 7 weeks now and digesting a lot of new information.

I have been looking forward to this day for a long time. It goes back to May 19th when it was my first trip to the C-spa which feels like a lifetime ago. I remember writing a blog entry the night before and being full of fear of the unknown and dread of what was to come. Now fast forward 6 months later and I have been through the worst nausea of my life, shaved my head and lost all my hair, managed to get 16 IV needles put in, struggled through all sorts of odd side effects and emotions and learnt to be fairly functional on extremely compromised levels of energy. I was actually walking to pick my daughter up from daycare a few days ago and literally had that “Aha” moment when the magnamity of the last year hit me suddenly. I couldn’t believe everything I had been through and managed to deal with. I mean I have been bald and managed to make it work! Go me! So as I look towards my last needle on Friday, I wonder how I will feel? Will I be relieved, will I be scared, will I be oddly sentimental? I mean this cancer business has been my life and there is comfort in the routine of it so I am unsure of my reaction to the conclusion of it. My daughter will be joining us for this final c-spa trip and I am ordering the cake today! I want to make sure the nurses know how much I have appreciated all their support through this process. The cake will say TUSEN TAKK CANCER SUCKS. For the non Norwegians reading this, tusen takk is Norwegian for thank you. I thought it was cute and hell it rhymed too! I really think sometimes we need to laugh about cancer as it has already had too many tears shed for it. And let’s face it cancer does well and truly suck!

Now Friday’s celebrations have been tainted slightly following my appointment with my oncologist yesterday. I seriously find these check ups terrifying and nearly started hyperventilating once we were in the room waiting for him. Once you are told you have cancer once, you can never truly rest easy when meeting your doctor because the unimaginable has already happened. I gauged his face as he walked in to see whether he would tell me something good or bad, however I think oncologists must have the best poker faces in the world. I couldn’t tell anything and he sat down and asked me how I was. Hmm… how I am? Sick of cancer, tired, frustrated and wishing none of this ever happened, terrified! We talked through the next phase of treatment which will involve 25 radiation sessions and what side effects to expect. It will be much easier then chemo in my mind as there are no needles! Radiation involves trekking to the hospital every day for 25 days straight (weekends are off) for a zap of radiation to the area where my lymph nodes were. It is an extra treatment to give you the best chance of killing off any remaining nasties lurking around the area. So according to my calendar, I will get my get out of jail card on December 20th! There will be lots to celebrate this Christmas.

Our discussion then shifted to hormone therapy which I had been dreading. In the beginning, my diagnosis was a non hormone related cancer which is one of the most aggressive but has one bonus of not requiring the five years of hormone therapy that comes with most hormone related breast cancers (which make up the bulk of breast cancer diagnoses). It was a small break amidst a lot of crap and also meant I could go on to have another child two years after my treatment had concluded. But now the fact that my cancer had a slight progesterone receptor (I don’t understand all the pathology or chemistry behind this!) meant that it was advised to do the five years of hormone therapy! I was upset to say the least as it meant taking a pill every day for the next five years, dealing with more side effects and this whole nightmare not being entirely over. Now I of course know hormone therapy is not the end of the world and the side effects are minimal compared to everything I have been through, but it feels like a continuation and it also means I cant have a baby any time soon. And when you have had cancer, time is your most precious commodity and you never know when it will be taken away from you again. I was also angry. Angry at the crappy deal I had been dealt of having this aggressive cancer whose only break was not being given to me!

And our final discussion surrounded the genetic testing of the BRCA genes which I have mentioned in an earlier posting. I bit the bullet and decided to have the test done on Friday. No sense in waiting now as it is there or it isn’t. I am getting a fast version of the test and if it is positive I will know in two weeks. If it is negative it still doesn’t mean I don’t have it but will require further genetic testing. Now the implications of a positive test are pretty major for me as the gene is passed through families. Children of parents with the gene carry a 50/50 chance of having the gene. If I carry either of the genes (there are two BRCA1 and BRCA2 with 1 being the more aggressive of the two), I will need to have another mastectomy imminently and lose my ovaries by 35. Yeah it sucks the big one people! Does this roller coaster ever stop? In my mind I was calculating numbers and 5 years of hormone therapy would take me to 36 and then the possibility of another child seemed to be slipping through my fingers. I hope I don't come across as greedy when I talk about my anger over not being able to have another child because I know many people never get the chance to even have one child. I know how lucky i am to have my daughter! Of course my husband and I want my health to be the number one priority and we are prepared to do everything possible to ensure I remain in remission. But it is a lot of information to process for anyone especially after having already been through what we have. I am praying that I don’t carry this gene but if I am then of course we will deal with it just as we have been dealing with every curveball so far. And how lucky am I to have this gorgeous little girl in my life! The doctor discussed again how strange my case was and the fact my cancer was undetectable which he hadn’t seen before. It made me thankful again for her in the fact that she truly saved my life and that I was in fact able to have her in the first place. She is my little angel and I will tell her every day how I am here because of her.

So after a bit of a shock yesterday, I had a cry while talking to Captain AC and let myself have one day of feeling upset and angry. Then I woke up today and just picked up where I left off. Life keeps going and you either decide to stand still and lament or look forward and continue walking. I want to keep walking because who knows what is around the bend. I am hoping it’s a big glass of champagne and some fabulous cake!

Thank you again for all your support through this journey.

Love to you all,
OBB