Tuesday, May 10, 2016

the schedule

so one more day to go and it all begins.

not sure what i will feel like writing tomorrow night so i figured that i would write now about the schedule for thursday.

once i check in mid day, i get my iv put in and have my blood drawn. then i have my check with the nurse. next i have a counseling appointment. then i start the first drug which will take over 2 hours to get through my iv. then i take the second drug which should take just under 2 hours to get through my iv. and so if all goes exactly according to their timing, i should be there for just over 7 hours. we will see how the timing works out, clearly, i am not leaving until they tell me i am done.

the two drugs that i am going to be on are ipilimumab and nivolumab which are known as opdivo and yervoy. i am not looking at info on the internet (but i am guessing you might be searching on google right now) because it isn't helpful for me and often there are more horror stories than good stories. if you see some good news, take comfort in that, and send me some good vibes. if you see some some bad news, send me some good vibes. but please don't send me links or data or stats, depending on my mindset and how my day is going, seeing info on the drugs isn't going to be helpful for me. i need to mentally believe they are kicking cancer's ass and anything that distracts me from that doesn't help me to keep my head in the fight.

i haven't yet read through all of the pages of side effects. i will. probably tomorrow night as a final way to mentally check my head into the fight. but not yet. this is still my time, not the drug's time, and i want to savor it. living in slight ignorance (though i clearly know what is ahead but not reading it all in black and white has made it seem a little less real) has helped a bit with coping up until this point. i will probably crack my last cider tomorrow night while i read what lays ahead, that will likely be fitting don't you think?

so more tomorrow night, but this gives you a sense of what thursday will look like. i have thought about this blog a lot since we got this latest news. and why this has happened to me. and i hope that sharing all of these glimpses of my story through these years has helped. maybe helped to understand better what cancer patients go through. the sadness. the grief. the day to day battles. the appreciation for the things that really matter in life. the mental ability to keep your head in the fight, when your body is doing all it can to fight. the losses. some you move on from, some you never forget.

my story. i don't know why this one is mine. i wish that it wasn't (i don’t want it be anyone’s story). i don't really even know after all these years why i share so much of the story in this space. i guess that maybe at the end of the day, i hope that it will make a difference in what you will think about when you think about cancer. and how you will think about those that are affected by it. and you will understand it a little better. and maybe you will feel a little more than you would have otherwise. that you will recognize when you are holding the shit in one hand and joy in the other, and you will be so damn thankful that in the midst of all that can and does go wrong, there are so many incredible things that can and do go right.

and that those are the things you must hold on to the tightest. because they are the ones you hold closest in your heart, and they are the ones that can never be taken from you.

not even by cancer.









7 comments:

  1. Alli,
    You stated why you share so much on this blog so I thought I would state why I check it daily and read every post you post.

    You know how I came across your blog and how I got started. But I continue to read it because I feel like I know you and your family even though we have not met. I care about you and wish you well. I really don't know what to say about what you are going through now. Just know that you are always in my thoughts and prayers.

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  2. Oh friend, I am so very thankful that your story and my story have intertwined and I get to call you friend. Thank you for sharing this update with the details for tomorrow. I am holding you close in thoughts and prayers and I like that I can think specifically about how the day is unfolding. All the love and light heading your way.
    I'm pretty sure I'll drink a cider over here tonight and send some cancer ass kicking vibes your way.
    Xoxo

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  3. Like Wallace, I check in daily to hear your voice. Your blog has made a larger impact on your village than you'll ever know. Keep up the tremendous fight friend. We will be with you all day tomorrow and in the days ahead. Fight Alli Fight!

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  4. When I stumbled upon your blog along my melanoma journey I was in awe of your grace,, truth, and matter of fact way you so perfectly described YOUR experience. You own it and it is clear to anyone who reads it (at least it should be) your intent is to chronicle the highs and lows cancer brings with it and what a life altering event it is-not always for the bad-you always point out how cancer has made you appreciate the little things-EVERY thing! I am so happy to call you my melahomey, melapeep, molemate, but most importantly-friend! FIGHT, LAUGH, LOVE!

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  5. Alli, my thoughts and prayers to St Jude for your health and comfort have been with me for you all week.
    Reading your blog for the last couple of years has helped me to understand what cancer patients go through. I am so thankful to you for this blog.
    Last November, I had to have an aorta aneurysm repair and I was scared silly. I wouldn’t allow anyone to talk to me about it. I did think of you a lot and how brave you are. I wanted to be brave, too. I was so calm when I went to the hospital for the surgery, I didn’t even take the Valium they told me to take before I arrived. I was so happy to accomplish being brave like Alli.
    I wish you all the best tomorrow. Kick it, darling girl.

    Scarlett from Oak Brook

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  6. Alli,

    I have followed your journey for a while now. Daily I check for blog updates. When they are there I read and admire the bravery and honesty you display as you travel this journey. When days go by without updates I pray a little harder that all is ok and the time just isn't there for you to write. As you embark on this next phase of your treatment know that many people far and wide are on your side. We pray daily for your successful defeat of the cancer beast. It is tough, but you are tougher. Prayers for strength for all of your family as you begin treatment tomorrow.

    A friend (you've never met) in New England.

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  7. There is not a day that goes by that I do not, in some way, reflect on your thoughts - either for my own thoughts or sharing with a patient that may be struggling. So, THANK YOU, for blogging. I'm listening..."i guess that maybe at the end of the day, i hope that it will make a difference in what you will think about when you think about cancer. and how you will think about those that are affected by it. and you will understand it a little better. and maybe you will feel a little more than you would have otherwise. that you will recognize when you are holding the shit in one hand and joy in the other, and you will be so damn thankful that in the midst of all that can and does go wrong, there are so many incredible things that can and do go right." All good vibes your way.

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