The Post I’ve Been Avoiding

IMG_0815Most people know that I don’t shy away from much.  In the grand scheme of things that’s very true.  However, when it comes to subjects that might seriously embarrass or humiliate people I love, even I have a filter.  (NOTE TO ALEXIS:  I said “seriously embarrass’…in my book, that does not include telling your high school friends that you are the fruit of my loins.)

So it is after great thought and contemplation that I write today, knowing that although the subject is delicate, it is also such a huge part of the chemotherapy side effect menu that it must be addressed.  With Steven’s blessing I share a little more insight into this transplant process, particularly for those who walk the path behind us.  This is a documentation of our journey.

As you can see, this has been a journey and in the two weeks since the transplant, Steven’s physical appearance really shows all the stress that his body has endured.  The hair and beard that had been growing back has fallen out again, his weight has dropped by over 20 pounds and his voice has taken on that rasp that always comes after chemo.  He sounds like an old man.  The chemo brain has him grasping for his words a little and making his speech much slower.  But the real bane of our existence is a lot more boring…

STEVEN ON TRANSPLANT DAY - MAY 27, 2015

STEVEN ON TRANSPLANT DAY – MAY 27, 2015

STEVEN TODAY -

STEVEN TODAY (2 WEEKS AFTER TRANSPLANT) – JUNE 14, 2015

To Paraphrasing the great poet Meghan Trainor, it’s all about the poop. In the last two weeks, Steven has run the gamut of side effects. After his fever spiked, he had the nausea, vomiting, diarrhea, headaches, body pain and more hair loss. The new side effects commandeered his days as expected, and the bout with a c.Diff infection made diarrhea the main event. Slowly over the past two weeks, the C. diff infection was eradicated, the nausea, vomiting and pains have disappeared as his body starts multiplying the good stem cells, and Steven is feeling better.

And then there’s the diarrhea. Steven’s whole world has been all about the poop for 2 weeks and it’s been the scourge of room commode7122! At first it showed up with the C. diff infection and it was the WTF explosive kind of diarrhea that nobody wants or wants to hear about. But this is part of the transplant vacation package that shows up only in the fine, fine print in the brochure. Not everyone gets this little side trip, but as we learned on the BMT wing, nothing was unusual about it. Actually on this floor it seems nothing is ever a reason to panic. The staff has seen everything over the years and are calm, cool, collected and have antidote for just about everything. I firmly believe that if a unicorn flew out of Steven’s ass they would have some Skittles on hand to feed it! (I think that’s what unicorns eat)

Meghan & Steven

STEVEN & NURSE MEGHAN

Just as a little side bar, here is a very interesting observation about the staff. The nurses here are just as active in treating and educating the patients as the PAs and the MDs. And when I say “treating” I mean that in addition to the great care they provide, these men and women are always watching and evaluating their people. The nurses begin their shifts with rounds and then come back to the patient’s room with a cornucopia of all the medications that each patient needs during their 12+ hour shift. The coveted drugs with street value are combination locked up in a little drawer built into the patient’s room. All of the available doses of everything are monitored by the nurse and access is immediate for pain meds, nausea relief, diarrhea control, etc. Unlike other hospitals, the nurses don’t call down to the pharmacy once the patient has an issue, so there is no waiting necessary when controlling problems. And, the nurses know stuff! If something isn’t working or is causing a bigger problem, they are incredibly proactive in calling the PA or doc to make a change or tweak a medication. This is the most impressive group of nurses that Steven or I have ever seen. And unfortunately, we seen A LOT!

So with all the knowledge, experience and care that is the norm here at Shands, it is baffling that a minor issue like diarrhea hasimodum not been able to be controlled. We thought the problem would clear up once the c. Diff was gone. It didn’t. However after it cleared up they were able to add Imodium to Steven’s day and after the first couple of doses, it seemed to help…until it didn’t. And then the nurses tried almost every combination of times and dosages to get Steven some relief. They would show up at the beginning of shift with 8 little pills that were meted out hourly, or one every two hours, or two every four hours, or after every bowel movement or when it started to rain. There was no great success and the most honest dosage suggestion came from Dale the night charge nurse who has been at Shands for 30 years. (I really like Dale, he’s a little snarky, too.) His thought was to take all 8 pills, group them together and shove them up the ass. The situation was so dire that we considered it…or maybe that was just me. In the end, lol, we passed.

IMG_1185So here’s the touchy part. Last weekend, Steven was finally so frustrated that I had to wash all his clothes each day of my visit that he asked for some Depends. In an effort to make it less humiliating, the staff calls them Adult Briefs, but that is just a code and it doesn’t really make it any less embarassing. I will admit that I was even more impressed with Steven after his request because I knew he was putting his dignity aside briefly…or adult briefly…to make it less work for me and the staff. And I gotta say, I still think he’s the man of my dreams even in Depends. I guess you could say he’s the most Dependable man I know! (He had me take a pic, but I just can’t bring myself to share…sorry)

Among the highlights, this past week showed a fungus among us…in Steven’s blood. Not sure how it got there but they were worried it might have been something connected to his tri-fusion port. So after they ran some unit-fungal meds through him and the problem was contained, they removed the port on Thursday night. Unfortunately, now he has one of those arm IVs in addition to the basic port that was surgically installed in his chest under Dr. Sprawls care. So since the Alaskan Pipeline of ports is gone, Steven has tubes running through every opening in his shirt bringing meds and fluids into his body. In addition he’s wearing a portable heart rate monitor that’s housed in his pocket with all kinds of wire leads running to his chest. More on that later.

Worse news of all is that Steven really thought he was getting out on Friday. I came up here Thursday with enough stuff to holdHope Lodge us over for another week in Hope Lodge, but the whole plan has gone to shit…literally. In addition to the diarrhea, another confounding wrinkle is that Steven’s blood pressure is fine when he’s in bed, prone. When he sits it goes down. When he stands it REALLY goes down. Like 59/37 down. That’s about 2 pumps away from dead. Luckily his pulse goes up to compensate, and he doesn’t feel dizzy so he doesn’t fall down, even though he should. Because of that, he spent most of last week on lock down because he was SO expected to fall that his bed alarm was set so he couldn’t get up without supervision. Which is a great parlor game for someone with diarrhea. We’ll call it Spin the Potty. How long can you wait to get to the commode? I’m sure you get the picture so I’ll make the rest of the game description as (adult) brief as I can. You hit the bell to alert anyone that you have to get up and then gamble that it was enough time to get to the room and turn off the alarm before the shit hits the fan, so to speak. So that’s one way to pass the time in a hospital!

With everything tied together (you do know that the leg bone is connect to the ankle bone, right?), and after a SWAT team of nurses showed up the one night when Steven’s pulse dropped down to the same rate yogis achieve to recline on a bed of nails, the big guns were called in. Cardiology was in here yesterday. They can’t find anything wrong with Steven’s heart and suspect that low blood pressure is linked to the dehydration that comes with 2 weeks of diarrhea. So then Gastroenterology showed up. They are perplexed as well and need to take a closer look. Which means that tomorrow Steven will be getting a side trip on the Colonoscopy ride. And today, to add insult to injury, my incredibly patient husband will be given drugs to GIVE him the shits. Seriously, I don’t even have a quip. I’m at a total loss. So for now I will conclude with what said this when I started this post:

I share a little insight into this transplant process for those who walk the path behind us. This is just a documentation of our journey…but if you’re walking behind us, watch out where you step!

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widgetTHIS IS IT!  Unfortunately, we don’t know when Steven will be released from Shands or how long we’ll be at Hope Lodge afterwards.  What that means is that I don’t know how much time I’ll be away from work without pay. I’ve only got 2 sick days and 1/2 a vacation day left and our bills still keep coming!  If you think you’d like to help us, we’d really appreciate it.  Visit our GO FUND ME page and drop a bit in the hat if you have some to spare.

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4 thoughts on “The Post I’ve Been Avoiding

  1. Love you guys so very much sending prayers several times daily, tell Steven he is an awesome Dependable guy, you have blessed each other, never cease to amaze me with your strength, God Bless

    Sent from my iPad

    >

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  2. Your the shit! (No pun intended) your always on my mind, praying daily for a full & faster recovery & hoping when I get back to FL you’ll be a new & improved you. Thank you for the updates Alexandra ❌♥️❌♥️

    Liked by 1 person

  3. During our transplant process my husband had to resort to “depending” as well. It was a great day when I finally was able to avoid that aisle in the drug store. My mantra was this too shall pass – quite literally. I used to tell him that one day we will look back on this and laugh nervously while I was emptying the trash of used depends. I really think you need to make this into a book, Alexandra. Your observations are spot on!! Prayers sent your way!! – Celeste

    Liked by 1 person

    • Thanks, Celeste. It makes me feel good to know I’m getting it right. It makes me feel even better to know people who have gone through this and came out on in good shape the other side!

      Like

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