So, now what?

Written November 3, 2016

I’m one week from being discharged from the hospital and am doing fairly well.  My energy levels vary each day but I am finally eating normal again and going on walks with Dad while he’s in town.  There’s this beautiful arboretum right behind the apartment.  It was founded in 1872 and has over 200 acres of 4,000 different types of trees, bushes, plants, etc.  It really is the biggest perk to living where we are.

Historic Carriage House we’re living in built in 1885 – Made into 3 apartments in 1980s
Dad hiking in the arboretum
Posing for a picture with the beautiful foliage in the arboretum

But, the heaviness is still there.  The first few days of being released from the hospital were super emotional as it usually is.  I’m usually on cloud nine when I’m getting discharged, but I’ve gained a rapport and friendships with these people that I see for 12 hours a day.  They’ve become my social life since I don’t have my friends up here. It is comforting being checked on and having many be concerned about your wellbeing, albeit it sometimes can be extremely annoying, but there’s a sense of security too.   Now that I’m home, it’s up to me to make sure I do everything by the book to avoid any kind of infection.  So that means avoid public places, stick to my diet restrictions, try to get out and walk everyday, rest and repeat.  It will be like this for the first 100 days post-transplant and right now I’m on day 28. I’m only a week out of the hospital and getting real anxiety about how I’m going to keep my sanity for the next few months. Especially with winter right around the corner.  I need to find some serious indoor hobbies.

Then there’s also the stress of the transplant itself and all of the things that can happen even if I do everything exactly how I’m told.  There’s always the risk of graft vs host disease which can occur at anytime within the first year.  Excuse me, what?  I read through my recovery booklet today and it says multiple hospitalizations in the first year are common and shouldn’t be seen as a set back.  I could and probably will get pneumonia at some  point.  Ok, awesome.  It’s basically 70 pages of all of the could happen to you in this recovery process.  It makes it really difficult to try to look into the future and make plans or have expectations because you really don’t know.  I’ve said it before, the unknown is the worst.  But then again, our whole lives are an unknown so it should be no different but it is.  It’s knowing shit is going to go down but you don’t know when, or how badly. I just have to enjoy each day that I’m feeling good and have energy and take those days as a win.  As for the bad days, I need to give into them and hope the next day will be better.  I’m still having issues with some nausea and vomiting, which is to be expected.  I literally take 26 pills a day right now plus this nasty liquid, twice a day.  I have this giant pill sorter that is a lifesaver.  I pretty much feel like I’m in my 90s and I don’t know when that will go away.  The handbook says that part of the struggle is you feel like you’ve traded one illness for another and while I still have a long way to go to see the long term effects of this transplant, I can already relate.

They say a year recovery at least.  6 months of it has to be spent up here and then hopefully if all is well I can return to Florida.  Once I get out of my 100 days of lockdown, I can start living life a tad more normal but still on the cautious side.  But it’s also going to be middle of winter so not sure how much I’ll really be able to do.  People don’t leave their houses right? Lol this is all so new to me.  It’s constantly working on not getting extremely homesick for my friends, my house and pup and all of the great things I’d be doing if I were home and healthy. But, I’m not and this is my reality and I need to keep that in check.

Mom, Dad and I took a mini road trip to Hampton Beach, New Hampshire this week.  It’s only about an hour drive and we just went to have our packed lunch on the beach and then
drove home.

Mom and I at Hampton Beach

I cried the second we got on I-95 North wishing we could just go South and keep going all the way home.  Cried again when we got to the beach because I would normally be there with Bumper by my side, in the sunny heat, not 50 degree overcast weather.  Crying aside, it was still nice to do something different and have an experience.  We’re trying so hard to make this time in our lives not only have a negative connotation.  Maybe we can create some fond memories in the process.  Hell, I’m lucky I’m doing this well so far.  A mere 2 weeks ago, I was in complete agony unable to eat or drink and here I am having lunch on the beach.  I need to bask in the wins when I can.

Dad posing in front of the hotel he used to stay in when he vacationed here as a child
Dad and I on Hampton Beach

That’s the funny thing about this process, good day or bad day, there’s just an emptiness inside. I don’t feel like myself, I don’t look like myself, I don’t act normal.  It’s difficult to get a laugh out of me these days.  I know time will heal these wounds but how much time? I’m impatiently waiting for that day where I feel like me again.  Maybe this is how it should feel.  Hell, I have a whole new person’s immune system.  I really am not me anymore on a cellular level which is so crazy to think about still.  I’m doing the best I can and I have to give myself credit for that.  I am put into perspective everyday when I read the Saving Karter updates.  Not sure how you’d miss this little boy’s story but he’s a local 2 year old fighting stage 4 cancer and his treatments and surgeries are so intense.  That little boy doesn’t even understand what’s happening to him.  My heart breaks with each update, even though he’s doing as well as could be expected, but it reminds me that so many others are fighting.  Not only others but children and if they can do it and still smile and play, then I can continue to push forward and not feel sorry for myself.  Yes, I think I’m allowed to occasionally but it’s a really slippery slope.

I started this post a couple days ago and it was littered with why me’s? That is a pointless question to ask and I shut it down real quick because I will never have an answer.  You have to save yourself from going down those paths because they’re dead ends and they will only hurt you more.  I’m doing okay and I’m pushing through and that’s all that matters. Many, many tears and some days its hard to get out of bed but I do.  I push forward because it’s the only way I know how.

Hope y’all liked this post.  I wasn’t feeling very inspired but I know a lot of you are curious for an update so I figured I’d give ya something!  A little insight on how I’ve been. With all of your support and love, it truly makes this easier.  So keep the prayers coming!

Living day by day,



3 thoughts on “So, now what?

  1. DeLaine says:

    Love you girl. Wish I could be there at times to offer that shoulder to cry on so I could also be there to hear that cute laugh. Love and prayers to you from us❤️

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