Friday, September 5, 2014

Long time, no post

I have 6 days left of cycle 3.  Yes, that means I had positive results from cycle 2.  I had my scans and doctor appointment mid August but because I had my CT and doc appt back to back, there wasn't ample time for the trial team to do the measurements.  I had a EKG, a muga scan, my CT and blood tests.  The EKG and muga were due as they are every other cycle.

The doctor, who wasn't my regular trial oncologist, was able to confirm that all of my tests, with exception of the CT, were good.  He was able to tell me that he had eyeballed the CT quickly and from what he could tell things were at status quo or better.  I was sent to the pharmacy to pick up cycle 3 and was waiting for the official results within the next week.  I was also put on Zantac 300 every night for my (wicked) heartburn.  There are better drugs out there, except that they interfere with the trial drug so I take my Zantac, tums, avoid acidic foods/juice and suck it up.

I got the call on Friday, August 15, the day before my birthday, from the trial nurse telling me that one tumor in my lung had grown by 2 mm, although she told me to take it with a grain of salt because sometimes it's hard to measure from the image.  The other tumor had stayed the same.  The tumor on my sacrum, which nothing has been able to touch in over a year went from 54mm to 49mm.  So after 2 cycles of the clinical trial drug I went from 113mm of tumor to 96mm after the first cycle and then to 93mm after cycle 2.

I can't complain this cycle about side effects.  I started to bruise a few days ago, whereas it would be right away in the last 2 cycles.  My BP has been relatively stable.  Aside from the heartburn which progressively got worse, up until today I didn't have any fatigue.

I was lucky this cycle as it was a busy month for me.  I had my birthday, went to a friend's wedding in St. Andrews, went to see Shania Twain in PEI and just got back from Saint John yesterday as my sister had her second baby, making me an auntie again to the cutest little boy ever, Sawyer. During this entire time too I've been living at my parents' as the entire top floor of my house is being renovated.

I go back for my next CT, blood work and Doc appt the 22/23 of this month.

To cap off my semi-short post I have included a piece of writing I had done recently.

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What cancer CAN actually do... Change you.


How are you supposed to remain focused, determined and true to yourself when you've been sick for so long that even you don't know who you are anymore?  I have been in this what I call "living hell" for almost 4 years now and every single day is worse. By a tenfold. I know who I used to be: a sassy little blonde girl who loved to laugh, play sports, workout, continue my education to advance the career I had just started. When you're given a cancer diagnosis at any age it is difficult to deal with, but somehow I feel that at 24, it couldn't have come at a worse time. I have been robbed of the life I wanted and was working hard on obtaining for myself. I wanted a solid, challenging, rewarding career, I wanted to continue to challenge myself to stay physically fit and had just completed instructor training at the YMCA. I was coaching and playing soccer, I wanted to keep my hand in the speed skating pot as that has been my passion since the moment I had my first pair of (plastic) skates tied up. I wanted a house, to get married and have a family of my own. 

I just turned 28. I haven't worked in over 3 years, except for the 6 month stint I was able to do before this disease haunted my dreams again. I sit at home while everyone is busy with their day today. My biggest decision most days is if I will wear w bra or not because honestly who cares no one will see me! I did buy a house, which keeps me busy with renovations and I do have a dog. But knowing that the amount of chemo and radiation I had and now being on a clinical trial the rest of my dreams are washing away. 

I no longer know who I am. I know who I was and who I want to be. I spend every day doing the same things (SSDD- same shit different day). I never was one for tv, now I can't find a show I haven't watched. I tried to get back to the gym but just cancelled my membership as I hadn't been there since April due to side effects. I have read more books in the past 3 years than a small village would in a lifetime. I taught myself to knit and keep busy with other arts and crafts. 

So many of my friends and family are fulfilling their dreams, and no it it's easy for anyone, although It can't be any more difficult than being a bench warmer in this game of life. I'm ready to fulfill the dreams I had for myself. I just don't know if I will ever get there. I am exhausted. Physically, emotionally and mentally drained. I have gone through the "traumatic" events of a cancer patient: hair loss, weight gain (both repeatedly), losing friends, dwindling out of social circles. The times I used to be out for a beer with friends are now spent alone at home juicing. Not quite as enjoyable. No one ever seems to know how to react around you. Just because a person has cancer does not mean that cancer has them. Cancer doesn't have me. It won't ever win no matter what the outcome. I am still the 4'11 spitfire, potty mouth, brutally honest girl who is happiest in sweats or yoga paints, eating her face off while crying from laughing so hard. Although that girl may be buried in the turmoil of her current situation, she is still there. Please don't ever treat someone with an illness any differently than how you'd wish to be treated if the shoe were on the other foot. Unfortunately the statistics are not in any one's favor these days. It's so important to educate yourself on what you're eating. I have learned so much on this journey. I have grown as a person. I have changed. I know what is important in life. I honestly wish everyone could have cancer for a single day in order to discover what their life is truly about almost instantly. 

If or when I am ever better I won't have a sweet clue where to start. I will be so lost and not know how to adjust the new Laura in with her old life and routine but that is one "problem" I'd love to encounter.

4 comments:

  1. Hi Little 4'11" spitfire. Your spirit continues to shine through. It is good to hear you have a response to the clinical trial and here's hoping it continues to shrink the tumours. If you ever come through our way again (Saint John) and have a moment to spare, I/we would love to meet you. Patricia Bullock, mom to Mathew

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  2. So glad to hear that you had a response from cycle 2. Good luck with cycle 3.

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  3. That's an excellent write up on life with cancer esp from a young person's perspective. I wish everyone young & older could read it. You have have to deal with so much. I admire your spirit. I have cancer too, a rare sarcoma in my liver. I'm on my 2nd course of chemo & next step would be a trial drug but I mananged to get on the liver transplant list so my hope is that will work out. I'm 48 yrs old, so much older than you tho I can totally relate to feeling more like a bystander rather than a participant in life. I've been off work for over 2 1/2 yrs. It is the strangest way to live and I can only imagine how hard it is for you with all your dreams & goals ahead of you. I pray for your continued perseverance. Keep dreaming!

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  4. Hi Laura

    I hope you are doing well and had positive results from cycle three.

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