NED!!!

NED...you've finally asked me to dance!!

Thursday September 20, 2012 will be another date forever etched in my mind! It's still seems surreal, I can't believe I'm in remission! I read about other women getting here just a little part wasn't sure I would be lucky enough to get here! I had hope but the real thing is friggin amazing!

Just as a recap I had the damn buggers in my lungs and liver but as of right now the tumours in my liver are completely gone and the tumours in my lungs are too small to identify and my doc said they were more than likely scar tissue!!! I also had some fluid in my lungs that also disappeared!!!

So I'm hoping I've had my second to last chemo as we thought two more just because it kinda sounded like my doc hadn't dealt with this a lot and she wasn't sure where to go next!! As I was jumping for joy I didn't care what she through at me!!

I'm new and improved and cancer-free!!!

Ned, Reggie and the stable boy!

Chemo again...
Well it's been a little while since I updated so at the request of my dear cousin Brenda here's my update! So just when I was at the point of possibly in the near future of going without a scarf as my hair was growing back, I end up back on chemo! So I'm back to not working, no hair and living my life in 2 week increments as the week after chemo is a write off between the nausea/vomiting, no taste buds and body pain! I realized the other day that I've been living this shit for almost 18 mos!!! I'm happy to say that at least I'm dancing with the stable boy but I'm really holding out for NED! Every cancer patient  wants to be friends with Ned as he's also known as no evidence of disease! or there's also Reggie regression!! So as I look forward to another ct scan in September, as I also have to live my life in 3 month increments as well, I'll be happy to still be dancing with the stable boy but I'm going to be hoping that dear Ned is waiting just around the corner!!

Hi Ho back to work I go!!!

First off, my brain ct showed no brain mets....yippeeeee! Went for a heart scan which showed my heart functioning at 45-50%...another yippeeee!!!  and thirdly I can go back to work!!! No more chemo for now, my oncologist seems to think I'll only get a few herceptin doses in before I have to go back on chemo again but I intend to prove her wrong!  I'm going to do everything in my power to make sure my heart function stays up and I can continue to work at least for 6 mos to a year...who knows maybe longer if my 3 mos ct scan shows no evidence of disease or NED! My other goal to finally be cancer-free!  So whoever reads this and what greater power you pray to please keep me in your prayers as I intend to be a miracle!! 

Chemo Break!!!

Have been suffering more and more everyday with nausea so I asked my doctor for a chemo break.  She thought the idea was good as my last scan showed I was stable....so as of now no more chemo for at least a few months that's what I'm hoping for!

Only scary thing is she also sent me for a CT of my brain because I shouldn't have this much nausea with this chemo so Tuesday I find out the results for that.  I'm just praying that the scan is clear is I don't want to do battle on that front too!

This journey seems to have a neverending of BS to deal with, I'm getting through but just barely!  I'll be back when I know the results for Turesday...anybody who is religious reading this please pray for me my brain scan is normal, I know I'm not lol!!! but I want my scan to be!!!

Chemo Break!!!!!

Well got the latest results from my last CT.  Word is all is left is little tiny tumours in my lungs and no new tumours in my liver.  A friend asked it that meant the tumours were gone in my liver, I'm really hoping that's what it meant, unfortunately I never thought to clairfy that with my doctor. I was too busy hearing the part where she said we would do 2 or 3 more chemos and then take a break...yipppppeeeee!  So I'm counting, one down, possibly two more to go!! I'm guessing that my doctor will put me on herceptin again (the drug that hates my heart) but I frankly don't won't to go without nothing for insurance!  Although if no tumours are left, I'll definitely chance it!

My rwo favourite words right now are SPONTANEOUS REMISSION!!! That's my goal...or No Evidence of Disease...that's my favourite saying!!  Even though I'm not deeply religious I have faith that I will someday reach one or the other of my sayings!!!!You need FAITH to have a HOPE and I have both!!!!

Spoon Theory

Well finished chemo 3 and 4!! and what a ride! Nausea and pain for 7 days! I realised during chemo week I do nothing except crawl under a rock till I feel normal. I can't eat anything but applesauce or popsicles and pop meds until I find something that works to make me feel better!  What a life! Which brings me to the "spoon theory", on one of the websites I frequent a lady had posted this analogy of what people with chronic illness have to go through, please forgive it is rather long but definitely thought provoking...in it the author speaks about having lupus but I'm sure it can relate to any chronic illness!

The Spoon Theory
by Christine Miserandino www.butyoudontlooksick.com

 My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

 I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

 When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

 After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.
© Christine Miserandino

Round 3 all aboard the chemo train!

 January 13, 2012 I started chemotherapy for the third time.  This time I'm getting Abraxane, my oncologist assured me it was of the same family as I what I was getting before but a lot less harsh.  I didn't need steroids because the side effects were supposed to be milder! Yeah right! Once again I experienced nausea, vomiting for two days followed by an achy body for the next five days!  At my next visit I requested better anti-nausea medication but was told I had to work up to the good stuff...give me a break!

So here I sit, I had my second infusion of the abraxane and once again spent two days being nauseous followed by unbelieveable joint pain that had me popping tylenol 3's every four hours!  Turns out somewhere along the line I had caught the flu so it was hard to distinguish between chemo pain and flu pain...needless to say I was not a happy camper!! I still continue with the aches and pains and now I just have a runny nose and cough! Btw my last ct scan said that I was stable with no new tumours in my lungs or lymph nodes and the tumours in my liver in one quandrant they can't even see them anymore and another place they continue to shrink. My goal is to be dancing with NED (no evidence of disease), I even bought the t-shirt for that day!!  So that's my story up until now I will continue to update as time goes on!