Thursday, February 21, 2013

february 20th

so now february 20th joins july 16th as a day i will never forget. there are other days as well - the days i had surgery, the day i started treatment, etc. - but 2/20 and 7/16 are the standouts.

let me tell you a little about how the appointment went.

we were in the room waiting for 45 minutes. yes, 45 long and painful minutes.

then one of the residents came in. she looked very nervous, that made us very nervous. she asked where we live. that made us more nervous. she then looked at my incisions. she then asked if we knew that my surgeon wasn't in. yes, we know that. she told us one of the other doctors would be in to see us. when she walked out, we both knew. but, we still tried out best to hold on to hope.

twenty more long and painful minutes later, the surgeon came in. he asked where we live. confirmation that bad news is for sure coming next. he asked if we knew that my surgeon wasn't in the office. yes, we know that. he then told us it was melanoma, and that "melanoma is pretty much what we expected." don't take it easy on us - how about you just cut to the chase? unbelievable. he said other things, and it actually pissed me off even more because his words didn't help. his words didn't make me feel better. i didn't need to hear anything from someone who doesn't know us, and doesn't specialize in melanoma. i just wanted him to get the hell out of the room and to leave us alone. if i ever have to do it again, i will make sure that we get the results from my oncologist and not the surgeon. that experience couldn't have been worse than it was. i take that back - it could have been worse had he told us that they didn't get all of the melanoma out with the surgery.

so since hearing those words "it was melanoma", there have been a hell of a lot of tears around here. i am sure you aren't surprised. the tough conversations have begun. next steps. priorities on how our time is spent. ensuring malena's routine stays in tact. keeping life as normal as possible for her. it is damn hard to act like everything is ok when everything is absolutely not ok. but that is what you do when there is simply no other choice. for us, there is no option to but to keep life as normal as possible for her. if a time comes when another decision is necessary, we will make those decisions as we have to.

so, stage iv --- what does that mean? i will talk about it next week, not quite ready to crank out those words yet. we are going to meet with my oncologist on monday, although we already walked through this scenario with him so we knew what to expect. but, i need the comfort of seeing him again now and walking through all of this one more time that we know it is the reality of what are dealing with.

in the meantime, we are just tying to breathe. to make it through the day. to get some fun in our days. this weekend barrett, malena & i are just going to lay low and spend the time together. the weekend will include our new givens - s'mores and campout nights by the fireplace. it will also include a birthday party for one of malena's new school friends and the start of a new series of swim lessons. i am pretty sure that it will also include at least one glass of reisling for me.

there will be fun, and i know there will be tears. but it will all be part of us going on and finding our way forward.

we will go on from here, we are barely starting to piece together how that might look. i expect that we may never have this new puzzle put together as i anticipate we will need to keep moving the pieces to make our lives work within this unbearable reality.

thanks for all of the support, good vibes, kind words, thoughts and prayers. one of the things that barrett and i talked about last night is how lucky we are that we don't have to go through this by ourselves. we are so lucky to be surrounded by so much love. we are grateful for that everday, and we will draw from it everyday.

have a good weekend peeps. hug your loved ones. tell them you love them. spend time with your kids. spend time with your friends. spend time with your pets. call someone you love. send a card to just let somebody know that you appreciate them. send a text message or an email to someone you haven't talked to lately.

do it just because you can, that is all the reason you need. xo

5 comments:

  1. Hi Alli, one of your blog followers, Mary, posted a prayer request for you on Melanoma Prayer Center on Facebook just now and I've posted that prayer with a link to your blog. Many prayers as you and your family face this. https://www.facebook.com/MelanomaPrayerCenter

    Grace and peace,
    Carol

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  2. Hi Alli...I just saw your blog from the prayer link listed above..I will be following you but first I wanted to give you hope...I know in the midst of this storm it looks bleek and the waves are pretty rough but I am living proof god has everything under control. I am St4 met. Melanoma too and oh how I remember those words from my surgeon too. Its scary and no we dont know the future but there is hope. I have it in my brain and lungs along with over 14 sub q tumors but I have done a lot of treatments and it is stable and has been for a yr. I have had it for 3. Try to take a deep breath and do what they tell you and fight!!!! My prayers are with you..

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  3. Aloha Alli,
    Just want to let you know our prayers continue. It is difficult to find the right words to let you know how our hearts break for you. We could never imagine what you are going through or how you go through it. Your blog is our only peak. You are incredibly brave and special for providing that window for us and the many people that care for you. Thank you, we love you and we are watching your back. xoxo/Charlie and Doreen

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