Sunday, June 23, 2013
This week has been tough. No way to sugar coat or spin it in a positive way. I hit a new low.
So after trying twice to get chemo and not being allowed due to low blood counts, I managed to get it done Monday. But I think the emotional and physical toll of preparing myself day after day to do it took that much more out of my reserves and boy did I feel it. It was just me and the captain this week as the man and monkey were on holiday. In some ways it was good they weren´t here to witness my demise but I also think that I didn´t have the usual distraction that I have when they are here. All I could focus on was how god damn awful i felt and I felt AWFUL! This week I finally understood why people reject treatment. I remember watching cancer specials on TV and being in total shock when people rejected treatment following a relapse. How could they give up? How could they say no? It made absolutely no sense to me. But yesterday when I was on day 6 of feeling like sheer hell, I sent a text to my unofficial doctor - Dr Sunshine. It said " I don´t think i can do this again. I have nothing left." She literally phoned me within 30 seconds of my sending the text and I couldn´t even get words out as I was crying. Being able to have a cancer specialist on call like this who also gets me is invaluable and it helped talk me back from the ledge yesterday. Because I didnt want to go through this again and even though i have only one left, I can´t imagine being able to get through even "only one" right now. I have a new perspective on "quality of life" and the importance of it. But I am pleased to report that after our conversation, I felt slightly better and she reminded me why I was doing this and that right now everything feels so very dark but that there is light. Somewhere down this deep hole, it is there - I promise she says.
Today I have woken feeling better then yesterday. I managed to put on jeans today instead of track pants which I take as a huge sign that things are getting better. I am trying to look ahead and know that with every day, I will feel better. I really can´t think about the next round or what comes after that. It just isn´t helpful. I think things go minute by minute, hour by hour and day by day in this marathon. My focus now is to recover from the last round and nothing else. I think in some ways my body and mind protects me by forgetting how bad each one has been. The lines blur between what was worse and why. Call it selective memory or call is survival.
So I will enjoy having my family back with me and the welcome distractions it brings. I will focus on tomorrow being better then today. That is all I can do...take it one step at a time.
But cancer sucks. I hate it.
Sunday, June 16, 2013
"A waiting person is a patient person. The word patience means the willingness to stay where we are and live the situation out to the full in the belief that something hidden there will manifest itself to us." Henri J.M. Nouwen
Well I am on what should be day 4 of round 3 but instead I am sitting here in front of my computer pondering life. I have been lucky I guess in some ways - most of my treatments have gone off without a hitch and maybe because of that I didn´t really think anything would get in the way this time either. I went through the motions Thursday morning preparing myself and everyone else for the day and week ahead. The stress and anxiety that arise from this experience can be tough to manage but I am used to it and just soldier on. My mother joined us this time for round 3 and when we arrived at the hospital in the pouring rain, I knew it was game time. After putting my port in and taking the necessary blood samples, we waited. We waited and waited in the patient lounge which to be totally honest is so utterly depressing. There are many people there who are very sick and many of them (if not most) have more then a few decades on me. They smile at me and probably wonder why I am here and what is wrong with me. Or maybe they don´t and it is just my own self consciousness making assumptions. We met the doctor who I hadn´t met before but he definitely knew me. He said that he had heard about me and had wanted to see me in person. When I asked why, he said "We all take a special interest in our younger patients and you also have a very unique patient history." We went through my list of issues that have arisen since the last treatment and he delved into my mental status. He asked me a question that I thought was kind of strange. "Do you want to continue with the treatment", he asked. Well of course I wish I didn´t have to be here and there are a million other things I want to be doing but I most definitely would never give up. No matter how hard and horrid it is, I want to be here and be given the best chance possible to one day be healthy again. "No - most definitely not opting out doctor. It isn´t even a choice for me," I responded. He seemed convinced. An hour or so later, he came to get me again and took me into an empty room. It was then that he informed me that I would not be getting any chemo today. I was shocked and surprised. The funny thing about white blood cells is that you can´t feel them if they are low or high nor can you do anything to bring the numbers back up. Time is the only healer. I felt slightly defeated as I take pride in my blood values and have a little internal competition with myself to better my numbers every time. Looks like the chemo won this round. Even with the bone marrow booster shot, I had dipped below the sacred 1.0. Chemo was too dangerous for me to do. So we picked up our things and headed home slightly defeated - tails between our legs.
The next day we went through the same motions again and trekked back to the hospital. Is this getting boring yet? Same procedure again. Longer wait. Mental status questionable. After 5 hours, we find out that my white counts are even lower then yesterday and my potassium levels have dropped too. I had been having heart issues the last week which they think could be related to this. So another prescription and we are off home for the weekend. Hello sushi time! I was partly relieved but also frustrated as I just wanted to get this bugger over with. Instead everything will be that much longer and waiting just makes it all feel worse. What was additionally frustrating was that all of this had been planned to a t with my mother´s arrival and my husband and daughter´s departure to Turkey today (sunday). Originally we had bought this holiday in January and it was meant to be our family summer holiday. However when life threw us one giant curveball, I had to bow out but I still wanted them to be able to have some fun. But now my husband was leaving and we hadn´t been able to check this off our cancer to do list. And to add additional fuel to the fire, I got a phonecall at 10pm on Friday evening just as I was ready to head to bed. It was the Cancer Centre and they doctor needed to speak to me (okay so who would not go crazy balls over that?). Additional blood results were back, something else was low and they needed me to come in first thing in the morning. I freaked out of course. Apparently having low values in these two areas can cause some heart issues of which I had been having. The doctor told me if my problems got worse in the night to call them. I told her my problems were worse right now as a result of what she just told me and I was terrified. This is serious stuff people and chemo can cause serious problems. I went into total panic mode and took a valium to try and sleep. I just don´t want anything else to go wrong and I just want to finish this. But my body appears to have other plans. So for the third straight morning, I set my alarm for 6:15 and we headed back to the hospital again. I hate that place! Thankfully things were much faster this time and within 2 hours, we were out with a new prescription in hand. To be honest, when i got home I collapsed into a deep sleep - utterly exhausted by the drama of it all.
So this morning I drove my husband and monkey to the airport and it was so hard not to feel sad. Like I was meant to be there with them but instead cancer ruined everything and I was stuck here waiting for my chemo number to be called. If I were just here chilling out, it would be different. Chemo just sucks full stop people especially when compared to an all inclusive holiday in the sun. But I want them to have an amazing time and get away from all of this crap. And perhaps recovering with just myself to worry about will be better for me and I have my mom here to make me soup and just be with me so I will be okay. Things could be worse right?
I will enjoy what remains of the day and then get myself ready to do it all again tomorrow. I don´t know what the day will bring - poison or not. I will accept what will be. I will do what is required because there is nothing else to do. Patience is most definitely a virtue I need.
Friday, June 7, 2013
"There is always a lot to be thankful for, if you take the time to look. For example, I´m sitting here thinking how nice it is that wrinkles don´t hurt". Author Unknown
I am checking in with you all and having an all around pretty good day. After spending the last week or two, permanently stuck under a black cloud of despair, the sun has come out again. And boy does it feel good. I was getting abit worried about myself and wondered if I might be in a darker place then I thought. It is impossible not to feel down or depressed when you are facing cancer and I have no problem admitting that I sometimes wrestle with the big D sometimes. How could I not? The last week and half just sucked. My hair was falling out, my body hurt, I felt ill, I couldn´t do anything, and I felt like a prisoner in my own body. Some days I wish so much that I could just unzip myself out of this body and get out to have a day without cancer or pain or tiredness. Because no matter what I do, I never ever really get away from it. There is always something that pulls me back to the present...the situation at hand. And I have been dealing with alot of anger at so many things. I feel like I am living this cancer type of groundhog day where nothing changes. It is the same every day and I find the repetition of it all so hard to bear. I also feel like everyone else seems to be moving forward with their lives and doing all the things I want to do. Instead, we have fallen behind again. When I had begun to work again and be part of the normal world, I felt like I had made up for the some of the lost time from my first diagnosis, but suddenly I feel even further back then I was when it all first kicked off. And god does it make me crazy and often sad. Cancer girl in waiting I guess.
But onto the matter at hand that I has been on my mind the past few days. June is a month full of birthdays of both family and friends. Some people are turning 5 and others are turning 40. Everyone is dealing with the prospect of getting older in different ways. Some of us can´t wait to grow up whereas others would like to press some imaginary pause button before they truly start to feel old or god forbid - middle aged. I also watch alot of the Real Housewives shows (don´t judge as this is pure escapism tv) and those women are obsessed with stopping the clock and will go whatever length possible to remain youthful. I started to get annoyed if not angry with all these people worrying and fretting over the ageing process. You know why? Because growing old is not a right but rather a priviledge. I have people I am fortunate to call friends who are dealing with the reality that they wont get to their 50th birthday, or have Christmases surrounded by their grandchildren, play bridge at the seniors center or enjoy the peace of retirement. That is a tragedy. Not a wrinkly forehead or saggy bottom. I myself live in constant fear of losing out on the chance to grow old. Never have i wanted a face covered in wrinkles, hands peppered with liver spots, and a head of silvery shining white hair more then I do now. I want to be there to see everything come together in the end. The future is sure to be an amazing place full of new discoveries and adventures and I want to be there to see them. So next time you worry or complain over your scary next birthday or try and fight the hands of time, remember what a luxury it is to have that time. In the end, nothing else really matters. Time with your loved ones, time to fulfill a dream, time to discover exactly who you are...these are the treasures of life. And I am certain none of these things can be found in a $300 jar of miracle wrinkle cream made from whale sperm! :)
Now I will get off my soapbox and stop with the lecturing. The greatest waste of a life is someone who doesn´t appreciate what they have - right now. So get out there and live.
PS: Hair update - still have a significant amount that is remaining attached however there is a small bald spot forming on the top. We will be monitoring it for further developments and decide what to do should it come to a case of "old man head". I am banking on keeping what I have now so I can go to my Onco and tell me "Hey buddy - you were wrong." :)
Sunday, June 2, 2013
Just wanted to post two pics I took from yesterday. I feel like getting your haircut short isn't the biggest deal in the world nor should I get a medal for it - especially considering I have already been bald. However it is the reasons behind it that make it different. The fact it wasn't my choice. Perhaps you see some of that in the first pre cut pic. Hair musings....
And the end result! Very cancer chic I think. Now to see what those little strands decide to do...
A lighter OBB xxx
And the end result! Very cancer chic I think. Now to see what those little strands decide to do...
A lighter OBB xxx
Saturday, June 1, 2013
It has again taken me much longer then intended between entries. So here I am over a week past my second trip to the C-Spa and starting to rejoin the land of the living again. How did it all go? Well it was different then the first. It all started out abit silly when we shipped our daughter off Thursday to her grandparents, I took the anti nausea pills and we headed to the hospital ready for the second torture session. The mental preparation required for these types of events is massive so you can imagine my upset when they told us that I was not actually getting any chemo today and it was only tests and dr talks. However this anti climax was quickly flipped into something good when we decided to head out for sushi and enjoy an evening at home without kids.
Knowing more about what was coming this time removed some of the anxiety over the what ifs but I was still so afraid of things going wrong. I worry that my port isn´t working properly and the toxic poison will spread through my body. I worry that I will react to some medication and start having anaphalactic fits. I worry about what other side effects could show up (tinnitis is one of those terrors). Such a bloody catastrophiser I am! But I am happy to report that everything went according to plan. My bloodwork was actually really good and everything seems to be going as well as can be expected. I actually felt pretty good the first two days and thought maybe my luck had changed. But the reality fairy unfortunately showed up Monday and things started to get really tough. Not only was the physical toll of this so awful, the emotional toll started to weigh down heavily on me. I am a chemo veteran and have been through this before but this seems so much harder then the last time. I remember feeling bad for about 3 or 4 days and then bouncing back but this time...It never ever feels like I get back to much of anything. There is of course improvement and today I am testament to that in the things I can do today that I couldn´t do a few days ago. But I had a breakdown day. Wednesday. The weather was crap. I had a headache like I do most days during treatment. There was a major nausea party going on in the tummy and my body just had nothing. The smallest thing took any energy I had and I spent the entire day on the couch drifting in and out of sleep. This feeling of just having nothing is new to me and it feels downright crap. I am a young woman and I should not be feeling like this. I have always had the little reserve of energy to get me through. Not this time. And to make matters worse, the hair has started to fall out. Everything came crashing down on me and it was just too much. I was on my own which doesnt help and I was just was so angry. This is a struggle like none I have experienced before and it feels like every treatment digs me deeper and deeper into this hole. So as you can see it was a tough week for OBB.
But there is always light in the darkest of moments and it came to me in a variety of forms.
I received a hand knit quilt in the post this week, organised by my fellow cancer blogger and all around super hero, Anniken Rokseth veientilbakeigjen.blog. Every patch on it was knit by someone different across Norway and it was put together for the sole purpose of providing comfort to a cancer patient. In this case it was me which was amazing but also kind of different for me. I have never been on the receiving end of charity before. I am happy to report that I used it for every single one of my naps this week (and there were many). For more info on this project check out Ull og om tanke
I came home from the acupuncturist on Thursday to a beautiful bouquet of flowers that brightened my day and my living room.
My daughter got sent a huge box full of the most wonderful Princess and Fairy inspired outfits to suitably distract her for a few days!
When I wrote a depressing status update on Facebook at the height of my black hole of despair moment, my army rose to the challenge and went into battle mode. I am not going to lie - I needed some sympathy and boy did I get it. I received messages from around the world at once. One friend told me she was going to clean my house and bring groceries next week, another brought soups and sauces to stock my freezer and another organised a food surprise to lighten the load on my husband. Because let´s face it - if he doesn´t cook, we starve in this house. So many people were happy to drop everything and be here for me in whatever way they could. Many of you have sent amazing care packages to me that make a bad day frankly amazing. I just find it amazing how you can become so isolated by illness but the world of blogging and facebook allows you to still feel part of something and in the company of others. And I am amazed by how many awesome friends I have in this world. You guys are really tops and I am so fortunate to have you on my team. I continue to be blown away on a daily basis by the kindness and generosity of you all.You spoil me, my daughter and my husband!
I am off shortly to the hairdresser and will be cutting the hair short. No buzz cut yet but I need to take some of the power back and stop watching these strands falls all over the place. What will be will be...
Love to you all! Thank you for helping me back from the dark side. xxx