Our blog is the story of our little family. It is not a CF blog and not meant to be all about medical updates, but sometimes that is what our story is ….even if we wish it were not. These past few weeks we have embarked on a new part of this story. There is no cure for Cystic Fibrosis, just a life expectancy. For some just getting to that expectancy is a struggle or sadly, failure. For those families and sweet souls, we pray. We are part of the lucky group. Danny has been given time and options, and no matter the darkness of the path - it continues.
For many years the path has always led to a transplant. This was the primary tool for survival for CFers, but as new development of drugs and therapies continue - the options for survival are growing. Danny is 29 and his lungs have endured a lot. The many promising drugs and treatments are extremely optimistic for those younger or whose lung disease are not as advanced, however right now we still look to a transplant as the ultimate step in treatment. In fact two years ago we thought that moment was just a matter of months away. We were preparing to move to Chapel Hill, where Danny was currently seeing a CF team, and trying to imagine life during that experience and after. That story is for another post, but the short version is just a few months later Danny had not changed much and we were told, actually with some serious effort and hard work maybe transplant is not so near. Again that was two years ago and since that time Danny has gained weight, increased his treatments, and we look at transplant as a potential future option, but not nearly as imminent.
Since that time our lives have changed considerably, again for another post. But for purposes of this story the important part is insurance has led us to Johns Hopkins for additional CF team care. Danny primarily sees docs at our VA hospitals, but with no local CF team we look to Hopkins for CF expertise. We had been seeing them for a year and Danny decided to try a tune-up with them last spring. Experiencing an exceptionally healthy summer the time for said tune-up did not come until two weeks ago. Heading to a new hospital was already a large change, then mix in some of Danny’s vein issues - this tune-up would be extremely different because it wold be completely unpredictable. Making this hospital stop a large part of our story….and a large post.
When you start a new phase you can’t help to look back - I think it goes “how do you know where you are going, if you don’t know where you came from” - or something like that. So where did we come from on the tune-up train? Well Danny came from a place of very experienced. He had done them many times and they were pretty cut and dry…..until they weren’t and then they were and now we were back to they aren’t. So he is accustomed to unpredictable. Me? Well unpredictable has never really been my thing. Which goes hand in hand with the reality that when we did start, hospitals was not really my thing either.
Danny and I started dating in June. As you may have guessed by now, summer is usually pretty good for Danny. That summer was no exception and although I knew Danny had CF - had known LONG before we started dating, and I knew he did tune-ups, it was not on the agenda for that summer, and neither was CF really. Every once in awhile I would be having a “first dating moment” - kiss, whisper at a movie, staring up at the stars and my nose would catch a unique scent…that of the meds. And even a few times I was transported out of my love story to reality, where I realized Danny’s body was using the meds in that moment to fight CF. But those moments never lasted as long as my butterflies and were merely a passing thought.
However as our love grew and traveled through the various seasons, winter came and so did that first tune-up. We were still new-ish and I never wanted him to have to think about explaining CF - nor did I want to really have to deny acknowledgment. Say what? Well, the reality was I thought of CF so little I did not want Danny to have to think about addressing it. Or worse ask me if I thought about it….leading me to say no, I did not really think about it and his reaction being, - well what else is she gonna say? Truth? I did not think of it and didn’t want him to either. So when that first tune-up came we had never talked about how hospitals FREAK ME OUT. The smells make my stomach queasy and I pretty much assume death or blood or vomit is bound to run into me at any moment.
Needless to say the first time I would ever see Danny in that hospital room - the guy that always said “he would sleep when he was dead”, had endless adventures and jokes and dimples forever - I could not go alone. My brother Grant joined me and it was not bad - once I got to Danny’s room and was comfortable knowing what I could expect to see - I was good. In fact once you got to his room - in those days they placed him the cancer ward for people that had to live there long term - it was like a mini, sterile hotel. There was a couch and TV and end tables….it was easy. Now I would not DARE exit that room (remember the blood and vomit and death - yea….no thanks!), but once I was there I was okay. That stay also happened to be the first and last time I slept at the hospital until this last trip. It was New Year’s Eve and I just had to be there to kiss the most amazing guy I had ever dated at midnight….so I stayed over.
Since that first trip there have been dozens more. We have celebrated Christmas Eve, birthdays, Easter in the hospital. We have watched three weeks of summer pass by from the ninth floor of the cancer wing. We learned how to pass the time - and even how to escape when it involved a Redskins play off game of O’s versus Yanks tickets! In fact an excuse to binge watch movies or TV series was welcomed! I got to know the hospital well and our food choices were pretty cemented - we had it all worked out. I even got better with my medical issues…..well after I almost passed out the first time I watched them put in a picc-line (see here for what that is) and the nurses all left Danny hanging (like IV only half in his arm, to get me water and a seat! Ooops! One week Danny left telling a nurse he had bought a ring to propose…..only to land back there a week or two later, but she was thrilled to hear my answer and see the ring. This is not easy reality and I don’t wish it on anyone, but really the hospital has become part of our story….and even some fond memories, well at least worth a laugh.
This time was different though….this time decisions would have to be made about Dan’s veins, we had no idea what to expect in terms of hospital, docs, nurses and plans. And the elephant in the room - this could give us a peak of what it may feel like to transplant at Hopkins. This time was different.
My mode of operation for the elephant in the room, for uncertainty, even for an experience that is a foreshadowing of what’s to come? Well - anxiety, need for perfection, talk it death…..and then probably a little more…and to crumble under worry, soar under pressure and keep that cycle going. I will obsess over minutia and then wonder if that is right or wrong…then wonder why Danny is not obsessing? Is he obsessing and not telling me? Wait - don’t we need to obsess together? O crap, am I a bad wife because he is not supposed to obsess or be stressed? And cue the panic and tears……for this trip - I had to dial it back. So I had conversation with myself (cue the crazy….or maybe you already thought of that?) - if I want this to go well for Danny and I want us to feel comfortable about the future….it is up to me. Be strong, be loving, be smart and remember to use your ears and not always your mouth.
That discussion came early - like our drive up there - and thank God it did because I needed my big girl panties right away. In admitting there were other CF patients….and all I can say is that we are lucky. Danny walked himself in - heck carrying his bags better than I carried my own. He was able to answer questions, speak up for himself, stifle his coughing fit, and when the time came, walk to his own hospital room unassisted. Other CFers - they were not doing as well. The tears stung my eyes as I watched these other patients…..you could literally feel their pain. I bit my cheek hard and thanked God for the wake up call…I guess he was really going to help me find those big girl panties after all.
Already this trip was feeling different and I knew I had to be different. So on top of nonemotional I made it a point to constatntly think of what Danny might need ahead of time. I wish I could say I am the world’s best wife and I do that already anyway…..but I am human, the hospital thing is not new, and if Danny needs anything he usually says it and I am more than happy to oblige. But nope, not this time - I figured if I was consistently considering what he may want to feel more comfortable or pass the time or make him feel “normal” or at a mimiim like it was not that bad - I had to step up my game. Drinks, food, movies, chargers, tolitiries, nurse questions, doc notes….I was ALL OVER IT! If I was being sure to plan out how much water Danny had consumed or when that last meal tray had been oreded I just did not have time to wonder if the hospital room floor was clean enough. And I am happy to report, it worked! Wow - I was able to survive 48 hours there, without a shower, my bed, my favorite pillows and feel pretty darn good about it…..go me!
This first wave of focusing on Danny helped me take it up a notch. If I want Danny to feel normal, if I want this trip to be pleasant and I wanted to help myself feel like I was living - I should look like I want to feel. When we were first dating and Dan had tune-ups I always made sure I had my make up bag in the car, my perfume was ready and my PJs or sweats were cute (Cue Cameron Diaz in the movie “My Sister’s Keeper” - effortless chic in sweats and uggs…and beautiful) …..but then the years passed and life got crazy and the hospital was always just part of the routine. I mean I came dressed from the day or whatever, but touch up my make-up - WHO HAS TIME FOR THAT???
But this trip I thought, what the heck - I will try and look presentable - sans shower and still in sweats. Well Danny said, wow - you really look cute for the hospital. SCORE - was this plan of mine working or what??? Now I will say by day three and I was leaving that afternoon for my break, the baseball cap went on but until then - I was feeling normal and I think so was Danny.
Food was an adventure and getting to and from the car a bit of “uncharted waters” for us. The hospital is in a dangerous part of town and I was constantly reminded to not walk outside after dark, don’t be on my phone, be aware of my surroundings. So some days we thought I would head home - yet waiting on a doc or test result would quickly push the afternoon into early evening and the sun wold be setting - so I would need to stay. For an A-type….unscheduled start and stop times - YIKES!!!!! But I made it a point to always say - well, I will just see. And then if I had to stay - I was very happy I brought my snuggie - even if I really missed my own bed. (Side note: for any hospital bound folks, my snuggie was PERFECT as bedding, just to warm up in the afternoon - and to think Danny got it as a joke for my birthday, when he was particularly poor after a ring purchase!).
This post was a bit long and covered a lot of terrain…but I felt it was really important. It highlights for our readers - but even just for us, what we have overcome in the past and how we can continue to learn and grow, together as we move forward. All these new experiences, the completely unknown which left me actually staying at the hospital with Danny - I really appreciated what he goes through - waiting on docs and food and answers and a light at the end of the tunnel. For Danny it highlighted that I am here, I am with him and I will be here through it all - even if I am scared, I still take scared with him than not scared and without him. We both believe part of being together is that we make the other person the best version of themselves….and this time, in a tiny hospital room, no showers, no answers, no end in sight and a lack of familiarity - we still held hands, we still said I love you at night, and we left the same way we entered that hospital - together.
Since starting this post that has been in the draft file for a bit, we have had two ER visits and Danny has landed back in the hospital. The test of my focus on him, my patience, my faith - it is all there and week three - it is hard. However, I am still feeling the strength found in Baltimore and if we made it through that much unknown - and perhaps even stronger together, then this patch too can only strengthen us. And if all else fails, I might try to make a business on hospital handbooks and supplies - a special version of snuggies, a bag that gives lots of options for what you could need (diaper bag for hospitals?), how to “shower” without a shower and make three day hair look OK under your fav ball cap! :) Silver lining…..its always there.
