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Scanxiety

January 16, 2014 Uncategorized

Screen Shot 2014-01-05 at 5.10.34 PM

I felt like I was getting better dealing with the stresses of MRI’s every two months.  My last MRI in November I was able to stay quite confident and not stress as much as the previous few.   That all completely went out the window these last 2 weeks.  

I seem to get this build up on anxiety leading up to my scans.  I get more into my head and everything becomes a symptom.  These last two weeks have been extremely hot, windy and dry.  I used  have fairly bad allergies which seemed to diminish when I changed my diet and lifestyle, but the last few weeks I started getting headaches again.  Don’t get me wrong I still get headaches, but they are typically seldom, few and far in between.  Leading up to my MRI done on Tuesday night, they started getting worse and worse.  It seemed as though the closer I go to that giant tunnel the more my head wanted to remind me just what I was in for.  I tried not to focus on them, but lets be honest… Impossible.  

Like I always do I toughed it out, stayed strong, confident, a little nervous,  and went in for my MRI.  Like always, once I got in that little tunnel and the all too familiar pattern of clicks, beeps, vibrations, buzzes and what I can only describe as laser sounds I was able to breathe again.  After having my 10th-15th? MRI I now have the entire process nearly memorized.  It starts out with a few small clicks, then turns into what sounds like a GIANT cellphone vibrating on a table with some random clicks strewn in.  The next part switches to an almost ping pong ball sound with clicks that you can hear coming from different areas of the tunnel.  These go back and forth for about 15 minutes until the laser sounds kick in.  Once the laser sounds get going the actual bench I am laying on begins to vibrate in sequence with the laser sounds, only a second or two with about a 4 second delay in between.  The machine then takes about a 30 second break and starts on what sounds like what you heard as a child watching Bill Nye the Science Guy when he had his electricity experiments (picture those two large metallic poles separated by about a foot with the bolt of electricity slowly climbing up to the top and disappearing into nothing).  A few minutes of this sound then the technician comes in and injects gadolinium dye into me for the final 10 minutes.  We start from the beginning again, but it changes to a constant buzz towards the end with clicks starting in sequence then slowly working their way to an irregular pattern only to end in sequence again.  Laying in that chamber I feel at peace, it might sounds strange but for some reason when I am there I have the assurance that I will at least have an answer.  The hardest part about cancer is simply not knowing one way or the other.  I have accepted whatever fate has in store for me, but having to stress every 8 weeks waiting for an answer grows tiring.  

Once I complete my scans I typically am able to leave with a copy of the MRI so I can go over it at home.  I am in no way formerly trained in anything that has to do with reading MRI’s, but it doesn’t take a PHD to look at two different images and find differences.  This MRI I was not so lucky however.  I scheduled my MRI for 8pm, which I always do- this time I got there and they were running over an hour behind due to emergency MRI’s that had to be done.  By the time I went in and completed my scan, the IT guy had already gone home.  No CD for Ryan.  To add to the stress my oncologist was at a conference yesterday so I got to wait a whole extra day to find out if my lease on a ‘normal’ life had been renewed for another 8 weeks.

I got home after my MRI and had dinner and was relaxing when i scratched the back of my neck.  What I felt sent me in a tumble of anxiety, flashbacks and panic.  There was a pretty significant 2-3 cm lump and a smaller tiny pimple like lump on the back of my neck where I know there are tons of lymph nodes.  Now with Primary brain tumor (meaning the cancer started in your brain and did not metastasis there) there is almost no chance for the cancer to leave your brain.  That is not what I was worried about.  

When I signed up for the chemo, radiation and trial drug I had to sign about 30 documents and waivers saying that I acknowledge the potential for almost any and everything under the sun to occur post treatment and one of the things they made pretty clear was the fact that all these treatments could in turn cause another form of cancer to occur, typically a blood born cancer which most always affects lymph nodes…  Well when you have Grade IV cancer everything is bad news- especially a lump that turned up out of nowhere.  After stressing, worrying and trying to calm myself down I finally was able to go to sleep- for a couple hours.  I ‘woke’ up around 6:15 and just laid in bed till around 7.  I tried eating a little breakfast, but that was not going to happen until I got some answers so I went down to visit Dr. E and asked her opinion on whether or not I should go see my oncologist.  I was able to see her around 9:30 and after about 5 minutes she assured me that it is nothing serious and most likely drainage from both the dye they inject into me during the MRI to help differentiate tumor from normal tissue along with some dry skin/acne I had on my scalp.  This was obviously a huge relief, but now I had to wait another 24 hours to hear about how my scan looks.

Today I went in for my second ever teleconference with my oncologist (this saves me from having to drive to LA and back) and he gave me the all clear!  Another 2 months of life granted.  Each MRI I get a little more confident, but not over confident.  Each clean scan adds a notch on belt and better vision of the future.  Hearing him say the word “stable” is like the most magnificent music to my ears.  I consider myself lucky, I get Christmas every 8 weeks! 

When I was panicking about the lump on the back of my neck I lost my focus.  I have been so strong through all of this and I let a tiny little bump sway me.  I kept telling myself it was nothing and I think I honestly did believe myself.  I have been pretty much spot on with everything that has to do with this cancer from the second I realized something was off in my head, but this bump threw me.  All I could picture were those pages of documents talking about all the potential for other cancers and I got scared.  I was genuinely scared for the first time since the day I got the call from my primary care doctor at work that hot day in October.  After calming down I started thinking of the road that I have been on for the last 14+ months.  Things have been terribly hard and I was able to stay strong.  I went through a craniotomy, radiation, 2 chemos, blood counts almost too low to function, countless IV’s, swallowed about a million pills, dealt with all the side effects that go along with it while trying to find a job, work and maintain some type of normalcy and all that time I never flinched.  Yes I got nervous, but nothing like how I was after feeling that lump.  It took me a while to settle down, but once I did I realized what I had forgotten.  I forgot the most important thing that has kept me strong this whole time and that is the fact that I have already accepted my fate- no matter what it is.  The day I found out what type of cancer I had was rough, but before the sun set that night about a year ago I made a vow that no matter vow to myself that no matter how this plays out I will stay strong till the end, not only for myself, but for those I love and those whom love me.  I forgot that in a moment of weakness and once I remembered what I had forgot I felt peace again.  

I want to say a special thanks to everyone at Stupid Cancer for sharing my story (if you haven’t yet, check them out on FB at https://www.facebook.com/stupidcancer or www.stupidcancer.org and thanks for all who have supported me from day one and those who are just joining!  Have a great weekend everyone!  :) 

FTGF
Ryan.
xo

“The harder the struggle, the more glorious the outcome.”

 

Disco Rollerskating.  Yea, they still have a couple!

Channeling our 70′s and 80′s past lives disco rollerskating Yea, they still have a couple!

 

 




5 thoughts on “Scanxiety

  • Elise

    Hi Ryan,

    I just started reading your blog not too long ago– first off, congrats on the good results from the scans! Secondly, thank you for sharing this, it’s good to know I’m not alone in that feeling of anxiety… I am 21 with leukemia, & finally in the maintenance part of chemo where I just take daily pills and go in for monthly blood tests, spinal taps, and chemo injections. However, I still feel that anxiety even after just three weeks as my monthly test comes around, and those thoughts race through my head, too– especially the ones about secondary cancer from all the dozens of chemo drugs they’ve given me. I’ve had several MRIs as well to check for bone and joint damage to my hips from one of the heavy drugs they gave me, and I remember the whole scan process you described so perfectly. Anyways, thanks for writing this. I was actually starting to freak out a little tonight about my upcoming tests and chemo, and reading this helped calm me down some. Sometimes all we really need to know is that we’re not alone and we’re not crazy for feeling anxious. Thank you, and best of luck to you– and please keep writing! :)


    • Ryan Coffelt

      Glad I could help calm you a little. I know it’s not fun, but it’s the hands we were dealt and all we can do is hope for the best! I wish you all the luck on your journey and stay strong!


  • RichardKaren Johnson

    Hi Ryan,
    My name is Karen and I’m married to Richard who was diagnosed with GBM IV last February 2013. He is 55 years old and we have two young daughters R (13) and O (9). We started this odyssey with the traditional initial treatment resection, temadar and radiation then maintenance temadar (March-Sept 2013). The cancer started progressing in Sept 2013 so we quit temadar and moved on to Avastin and Carbo (chemo). Were you ever giving the Avastin option and if so why did you pass it up?

    We started the Avastin/Chemo early October 2013 with the inspiration from our Doctor that Richard would be feeling great in not time. This was not the case and Richard continued to decline and in January 2014 our MRI showed a significant progression so we are not on the Novacure program as of Jan 22, 2014.

    We are interested in the HD VIT C and I am trying to get a referral/prescription for that and also Dichloroacetate (DCA) right now. Is there any secret to getting the HD VIT C referral or prescription? Is it only offered in certain hospitals or do all hospitals typically offer. Do you know much about the DCA treatment?

    We live in Alaska and are going through our savings fast traveling to the lower 48 for treatment. We did apply for his SS benefits immediately and that was the smartest thing we ever did. He was immediately approved, but took six months to activate.

    I love your story and it is similar to Richards. He has never ever felt self pity, he’s never even cried. He just wants to kick some cancer arss. We all do and hope our connection will help many. Thank you for fighting and sharing and inspiring. I feel a new lift after reading your story. Many new blessings to you, young man. Karen


    • Ryan Coffelt

      Hey Karen,

      Sorry to hear about your husband. With children it must be exceptionally tough. I am glad you are looking into alternatives, but I am kind of shocked that your doctor told you your husband would be up and healthy with the change to Avastin. Avastin is a much more potent and expensive drug so for the typical standard of care it is only given for recurrences or inoperable tumors. It is a great chemo for brain tumors, but to my understanding it is still in no way a cure.

      I do my HD vit c. at my integrative naturopath doctor in Southern California. I think your best bet would be to find a natural doctor willing to write a referral, many western doctors still think HD vit c is a waste of money. My doctor is very familiar with cancer and actually ran the Burzynski Clinic in Texas when he had to take a leave. If you are not familiar with Dr. Burzynski you can find his web site online and there is a documentary out on Nextflix as well, although quite biased. I would not recommend it for your husband as my doctor who ran the clinic did not recommend it for me. She said with GBMs there is just not enough cured cases to justify the price tag that can reach nearly $100k.

      At this point, with the tumor still being nasty there are other options you can explore. There are numerous studies on medicinal marijuana (specifically high CBD strains) that show great benefits to slowing tumor growth. Also limiting or actually cutting out all sugar and carbs and switching your body into Ketosis has shown potential to stop tumors by cutting off their much needed food source which is sugar. This diet is extremely hard and it takes a while for your body to get used to it. You will have huge spikes and drops in glucose levels for the first few weeks while your body adjusts and if he attempts to make the change, don’t be surprised if he passes out once or twice from low blood sugar levels so make sure he is not too active while the transition is being made. You can read more about the Ketogenic diet if you google it. I attempted this road, but it was far too hard for me to stay strict enough so now I am on a ‘paleo diet’ which limits my carbs to around 100g per day (I started at 65.) I completely cut out all added sugars and all I drink is water. I take multiple supplements to compensate for the fact that I no longer even eat fruit- Juice Plus as well as reishi mushrrom, tumeric, muscadine grape seed, pro-biotic and pre-biotics as well as digestive enzymes after every meal, a proprietary blend anti-inflammatory called vytalzyme, lots of b vitamis, vitamin d, fish oil and coconut oil- (all capsules.)

      Good luck to you all and if you have any question please don’t hesistate to ask.

      FTGF,
      Ryan


  • Jess

    Ryan, I am SO relieved and excited about your MRI results! God, I just went through complete fear, and horrible nausea about the lymph node, then hung on the line with you for results, finally, happy tears flooded my eyes with the news! You are courageous, and an inspiration. Thank you for continuing to share your story.
    - Your tumor fighting friend Jess


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