Monday, July 14, 2014

Let's Try New Drugs (or chemo arrived in the mail today, woo hoo)!

Today my much awaited new chemo arrived via UPS. We're trying our own trial of sorts with a drug called Cometriq....I canceled the trial I was going to do in Portland, feeling that it was going to drain me with lots of travel and unknowns. After doing a genetic test on my tumors, we learned that my cancer has traits similar to thyroid cancer, so this specific drug is very targeted. We know what I'm getting. The Portland trial wouldn't guarantee what drug I was getting as I would be either in a control group or not. My oncologist and I are hopeful this drug, although never tried with Sarcoma, has potential for good. Wouldn't it be a wonder if it works as we could make history and help someone else? ;-)

The white cooler of pills arrived this afternoon and I read through the usual side effects, nothing too different than the doxo. I was on. It came from an East Coast pharmacy with a packet of sunscreen, lotions, lip balm and a note: call us anytime. We hope this works too! They'll ship it every month, no cost to me what so ever. Miracle courtesy of my insurance company bending over backwards to help get this drug!

I hit a dark place last weekend but I think I'm coming through it. After getting home from Hospice House, I had managed to pull my groin and was in some of the most excruciating pain I have ever experienced...let's add insult to injury. I could barely move all weekend, but pushed through trying to get some grounding beneath me again. To feel, slightly, even if temporarily, normal. I realized there are about two days while at Hospice House that I do not remember in any way shape or form...my family came from Portland and I have no recollection of the entire experience...I remember other guests, but those days that I was really flying high on morphine are completely gone (no offense, family). It is a strange thing to  be made aware of a gap in one's memory...

The home health nurse came on Friday to officially sign me up. That's when it hit me. This is real. Before, I could go to doctor's appointments, watch them pump red chemo into my port and say the words "I have cancer," but it still felt surreal, like any minute the nightmare would be over and I would wake up to my old life. I had been working and trying to carry on as if all I had to do was take some drugs and it would be ok. The nurse (whom I like a great deal) made it real though...she asked questions about how home bound I am, what I'm able to do for myself vs. what my family has to do, and it hit like a ton of bricks. This is my real right now. Cancer is part of it. I got scared. The weekend turned into a dark place and I fell into a funk of wondering how soon I should be responsible for getting my affairs in order and still maintain a sense of hope and expecting miracles. It's a delicate balance. Everyone should have their affairs on track in the 30s, but who really does that?

Sunday my sis took me to the mountains for a little drive, loaded me up on morphine and we at least let the sunshine kiss our heads as we talked and cried. She made me aware of the darkness I had let sink it...I'm shaking it off and I know it will come and go, and I can be both responsible for me and expectant of miracles at the same time. All these things collide in this odd and beautiful dance unlike anything you can imagine if you have never walked it. It is a lonely place, and yet, the support I have is incredible...I'm in a strange paradigm.



My friend Nancy shared her survivor story with me again last night, and the switch went off: I still have time. I am not in my grave yet. The voice in my heart told me to fight, to make goals, to nurture myself and to put on my bad ass armour and fucking fight like hell (excuse my language). Today all I could do, thanks to being doped up on morphine for the groin pain, was lay in bed, ogle Pinterest and watch Facebook; there were no doctor's appointments, nothing that had to be done. Family friends graced my bedside chair all day encouraging me with hugs, love and laughter. I am not alone and I feel alone at the same time. BUT I feel stronger, more hopeful and more authentic knowing this is my story, crappy as it is, it is not finished! Both the struggle and the calm are beautiful and now being able to recognize that this is truly real, freely empowers me to process it, to feel the rawness of it and to move forward into both good days and challenge. I will have equal numbers of both and I am so very deeply thankful that I am never truly alone! The tribe that I have is bigger, more enormous in loving me than I will ever understand, and Spirit, is still here. As always. Bring on the new drug, the adventure, the eff off cancer attitude and a willingness to rest, fight and be in the battle. Here we go!

12 comments:

  1. You are right, you are not alone Sarah. With every word you write, we are right there with you. Thank you for that. You are still here, you are still writing and taking trips to the mountains with your sister, and that is a really great thing! Moment to moment to moment to moment, you are LIVING your moments. I can tell through your words. I'm grateful for that. Hugs! --Stacia

    ReplyDelete
    Replies
    1. Thank you so much Stacia!! Hugs right back to you! :)

      Delete
  2. Girl you have too much life, love and kick ass spunk to let the sad weakness of darkness to get the better of you. Keep hoping for forever and planning for tomorrow. You are a brave warrior my dear, courage is standing in the storm, afraid but not running away. I'm here and your always in my heart and frequently gracing my mind with your courageous spirit. Can't wait to see you soon!

    ReplyDelete
    Replies
    1. Thank you for being one of my besties and I cannot wait to see you soon!! Love you bunches! Hope you are getting some rest! xoxo

      Delete
  3. Thank you for sharing the darkness and the light. You touched my soul. Much love and strength to you.

    ReplyDelete
    Replies
    1. Thank you so much! I'm glad my story is touching people. If it inspires anyone else, then it is worth it! :)

      Delete
  4. You are a beautiful woman Sarah, inside and out. Thank you for sharing your heart!

    ReplyDelete
    Replies
    1. Thank you sweet Lauren!! I so appreciated your care package the other day! Thank you!!

      Delete
  5. Stacia is right, Roo... you are not alone! Thanks for sharing your heart and allowing us to walk with you through this valley. Love you and am praying for you as you start this new chemo.

    ReplyDelete
    Replies
    1. Thank you Roo!! Miss you lots! I appreciate all the prayers! Hope all is well!

      Delete
  6. Fight like hell sweet girl. I am sure the support system you have is easy to see as they have all done such an incredible job of helping you through but do not under estimate the power of the fight inside of you and the power of positive thinking. Easier said than done- just know, it works. Stay strong.

    ReplyDelete