I'm all bloggity bloggity until I'm feeling down and/or depressed. Then I climb under the covers and hide. When isn't that the heart of all writing? Pain? Anguish? Torment? Well, its not something I like to share but I may never write again if I have to say, "Everything is getting better and let me tell you about the hilarity of hospital pajamas." I'm starting to hermit out which Brett says is not healthy so here I am. Since getting home from the hospital, I have felt the worst I've ever felt. The level of fatigue I feel is one I in no way knew existed. I would spend all day in bed if I could, but I have to go to the clinic where I fall asleep in assorted chairs. At home, I can be awake for about 3 hours before heading back to bed. Even Luna knows I can only read her books; I'm pretty useless as a mom besides that. The exhaustion makes me emotional...I mean sobbing and heaving like a five-year-old with snot everywhere about- get this- something different EVERY DAY. I cry in almost every doctor appointment I have. I told them I was pretty sure I needed psychiatric examination, but there is a 2 month wait and "Believe it or not, this is very, very normal." says my nurse, who has been doing this for 30 years. I want to scream, "Are you kidding me? And this is the best you can do? Aren't there pills for this? I'm taking 40 pills a day with horrible side effects and you haven't managed one that will make me a little happy?"
I'd be lying if I didn't say some things haven't improved. The rash I had in the hospital turned out to be Graft-vs.-host disease of the skin, but it seems to be resolving itself, strangely. I am fully expecting GVHD of the gut next, and I'm scared. I have have been crackling and peeling everywhere from the radiation burn, and that is on the decline, so I look a little less monstrous. Also the rash is off my face. I'm serious, I didn't look in a mirror for almost a week, I looked like the CryptKeeper. One of my meds makes my blood pressure sky high, so now I"m on another med to lower it. But I may be dropping another one of my meds next week which would be 6 fewer pills a day. My counts are sky high: WBC is 5.2 and ANC is 3500. I get shots in my stomach every day to help these numbers come up, but tomorrow is my last one. This is good, because now the marrow can have more resources to make platelets and red blood cells. It's currently not making any, so I have transfusions of these every other day. Which means Benadryl every other day to prevent reactions, which means more fatigue. Ah, well. I had a 30 day post transplant bone marrow biopsy and they found no leukemia, and I am 100% donor cells. My derelict cells are all gone. These baby cells have a lot to learn. For example, they don't like Pad Thai. But generally I can eat without too much nausea which puts me ahead of a lot of people. I've seen a couple of people that got released about the same time as I did and it's clear they are having good days and bad days too.
Intellectually, I know I'm lucky to be alive this long, and possibly cured forever, but it is so hard to see the end of this. I feel like I will never feel "normal-ish" again. So sorry to be such a wanker this post but I didn't want to lie and I had received so many wonderful gifts and messages and I couldn't just ignore everyone forever. I miss you all too, I suppose that's part of it.
We took Luna to a pumpkin patch the other day and she chose a very small, clean pumpkin to carve and made friends with a chicken. It was almost a normal day, except that I threw up 4 times for no apparent reason. I also managed to help Brett take her to the park the other day. My physical therapist has a whole regimen for me and I can tell Brett is excited to be my coach. I see a lot more tears coming. We have lots of plans for Halloween, I hope I can do them. Pictures to follow, regardless. So I'm sorry for the long silence, then feeling sorry for myself. I hope you all are doing well and enjoying the fall.
17 comments:
Being a little hard on yourself there Quinn.
It is healthy to vent. I am just glad that your numbers are good. The rest will pass. Sending you all a double dose of positive thoughts.
Nothing about this sounds easy -you are a rock star for getting through it. No need to feel bad about feeling down (at least you have a good excuse - recovering from a life threatening illness, I get down when someone pushes me on the subway). Keep on fighting the good fight!
No such thing as a movie-style recovery. Can't wait to be with you tomorrow, Babe!
Jessie, I appreciate your honesty and I wouldn't expect that you would be feeling positive and great all the time. You have been through so much. Thanks for sharing your experience with us. I agree with Brett and Dirk's comments. Much love to you, friend! Please keep us posted as often as you can...whether it is positive or negative. I love you!
Thanks for sharing your intermost thoughts, Jesse. Your nurse is SO right, all the shit you are feeling is normal, just not the kind of normal anyone wants. I know it's going to seem trivial, but keep hanging in there. You have come so far and will get through the rest in due time. Who cares if you look like a bald measled Michael Jackson right now - the rash and the radiation peeling will end. Giving yourself shots is kinda cool! And I'm sure you will kick ass at any pill popping contest - drug addicts beware! And the fatigue - well it just F_CKING SUCKS! Who cares if you fall alseep everywhere - you obviously need it. Keep trying to set mini goals for yourself and in no time you will be doing more each day. Sending you warrior-like healing energy!
love to you Jessie.....I think of you often and hope you are back in Sac soon. In the mean time take what you need, even if it is a swift kick in the butt by your trainer Brett! You will feel better afterwards. And hug and kiss that sweet babe. xo, guinevere
Dude, that sounds like a major suckfest. But sometimes you need to touch the bottom to get back to the top. As for the fatigue and crying, you are basically a newborn and think about how much they sleep and scream. Hang in there. Love, The Yaskos
I wish we could all take just a little piece of your misery to live out so that you didn't have to take it all on yourself. When this is over you will have the best of yourself to share with your family and friends. Until then we will send the best of ourselves to you.
You know, that is why they gave each of the Chilean miners six months of therapy - if I may continue with my comparison. While you have been in the hospital, we have all been hearing about how difficult it is to transition to "normal" life after a near-death and long-lasting suck-y event. And to feel like crap on top of it. Surviving is the best mommy-thing you can possibly do for Luna. So keep reading her those books, keep getting better, and remember that "it will get better" (another very emotional campaign you missed in the hospital for teens). The message is right on - keep pushing on through - it is sooooo worth it on the other side. It WILL get better.
Can't think of one meaningful thing to say except that it is a great thing to be gifted with your words, to thank you for being you in this post, and to send all of you my love. Can hardly wait to see you!
What Mary Jo said! And Nurse Brett/Ratched is on the right track. And so are you.
hey jess, i'll buy you some new shoes when you stop throwing up...soon i hope
I don't know...does anyone else think she's being a little whiny?
(Man, I hope that brought a smile. We love you Jessie!)
Wow! I just got this link from Sarah and read through it all. You are one brave and powerful woman! Our thoughts and prayers are with you, Brett, Luna and everyone else close to you - including all the docs, nurses, etc. Can't wait to read your next post. Thanks so much for sharing your journey. Anne
Wish I was there but will be soon. So glad Patt is there for a little bit anyway. Thinking and praying, thinking and praying. Lots of people here who don't even know about you always ask how you are so they're thinking about you too. You'll get through this even though my saying so may not make you feel better. Drink coffee if you can stomach it and don't be hard on yourself for feeling so bad.
Jessie,
I can tell you from my own story of a 2 year chronic illness that resulted in one of the top 10 most complex surgeries, that what you are feeling is normal. We tend to believe that once all the hard stuff is over that we will bounce back. We do but it takes time. In my case it was a full year of fatigue which included clinical depression and 4 years of drug treatment for that. Give yourself the permission to be tired, I know how hard that must be with a child but hopefully Luna won't remember this period of her life the same as you will remember it. And believe the nurses; they are so astute. Hugs.
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