On Monday, Halloween day, I was in a plane headed to Chicago for the week to work. It felt epic, in that it was my first flight, first week, away from Wil since diagnosis. And I was holding back tears already.
The day before we had marked 2 years since discharge from his stem cell stay (10/30/14). Two years ago, after many times of thinking he would never leave that hospital alive, he stood up in that parking lot feeling the breeze on his face for the first time in almost 3 months. But during the weekend, our celebration was cut short and we headed for what used to be a typical "date night," circa 2013-2014: hours together at UTSW. In the ER.
In October, when we received Wil's anniversary test results, we found out that, although the transplant wiped him of HIS chicken pox immunities, they are back. From his donor cells. This was actually OK news at the time. Post transplant folks cannot get live vaccinations (ever again) and adults who contract chicken pox, let alone someone like Wil, are at high risk for complications. So, we thought, SCORE! One less scary thing to worry about down the road.
Fast forward to the Thursday, before I left for Chicago. Wil, in the middle of midterms, was feeling off. Headaches, watery eye, fatigued. Friday, he noticed a few smallish bumps on his right eye lid and forehead, along with continuing headaches on just the right side. Now, post transplant he has had lots of pimples as he often breaks out from his oil glands acting like they are teenagers again. He chalked the headache and eye puffiness up to seasonal allergies. But by Saturday, his eye was swollen, his eye painful now, and clusters of bumps appeared. He called the on call oncologist and we headed into the ER.
Side note: Whenever there is the unexpected I worry about two things: GvHD, or worse yet, the return of this leukemia. A moment. A text. A phone call. And I am suddenly transported back to the land of cancer via the Death Valley expressway. I know that may sound so full of gloom, but this is life after and why it's hard to let down your guard all the way. I realize my brain, like all of us, is negative tilt, looking for the scary in an effort to avoid anything lethal. My brain wants me to survive. And so, in these times, there are only 3 immediate choices: fight, flight, or freeze. Usually I go through all of them before I can ground myself again. Post cancer fun times.
This didn't look like GvHD (been down that road!) and shingles? On the face? Google images provided some direction, but his just looked...different. One look at it from the ER doctor and it was confirmed: Shingles of the eye. They ran tests, blood work, and he saw an ophthalmologist (since it can cause blindness)...all of which came out good. He was sent him home with medicine and strict advice to stay away from other until he recovered. What's funny is that he was prescribed the same freaking medicine he had been on for 18 months, as a protective measure, post transplant. So strangely it felt too familiar--Hello old Valtrex friend...it's just you, me, shingles, and a lot of couch time.
Side note about shingles: If you are in good health, with a normal immune system, and have had chicken pox, you are not at risk to be around someone with shingles. The shingles virus, if you have had chicken pox, is already a part of you! But it you have not have chicken pox, are pregnant, or immunocompromised, stay away from someone with shingles until they are no longer contagious (oozed and crusted over, lovely!). I was in no risk, but certainly others could be in one of those categories, so it was stay home for 1-2 weeks. And the face? Not the most likely place, as it's usually on one side of your torso. Wil....never doing things the likely way!
So I shopped and prepped the apartment for Wil's quarantine. I tried to think of Wil as my kitty.
Food. Check.
Litter, I mean toilet paper. Check.
(Calming breaths) "He will be ok, for a few days, of me across the country"...Check???
The mere thought of getting on the plane was, emotionally, almost as hard has leaving him at the SNF that first day. I told myself this is not the same thing AT ALL. But that dang brain stem...was all about the anxiety. Leaving him for the first time was already going to be hard enough, leaving him like that was so much harder. Admittedly, we are connected at the hip most days, for the past three years. He was trying to keep his spirits up, joking about keeping this "in focus" and any other eye joke he could think of at the time. I knew though, he was being brave and this was a hard time for me to be away.
So, having cooked more food than he could possibly eat, having set up a few back up plans should things get too bad, I walked on to that plane, missing him already.
He sent pics daily to update me (I will protect you from the horror of what his face has looked like...people say they can imagine, but honestly, I could not! It is far more gruesome and painful than all those shingles medication commercials makes it out to be). It was so hard to see the progression. Every day got worse.
I managed a few beautiful days in the north though, saw some lovely souls from the past, and got to absorb the energy of the city the night they "flew the W" on game 7. And was SO ready to be home with my favorite person in the whole big world who needed me. He had put on a brave front, but looked so worn out when I returned. He had survived on fruit snacks and crackers and canned chicken. He barely left the bed, other than taking the dogs out.
(Chicago)
(The pups stayed by him the whole week)
He's still in considerable pain. He has near constant nerve pain that he describes as deep inside his eye socket. He crusted and peeled early on. He had pink spots everywhere those blisters had been and now they are starting to even out to his normal skin tone. And he's sore. Fatigued. He still has headaches all day long. But it's slowly getting better. He has managed to drag himself to class, after he was no longer contagious, and even made it to vote (they were able to come out to the car to let him vote...yay accessibility!). But man, this has been such a long few weeks for him and may continue a bit longer. Fingers crossed the nerve pain it doesn't go months.
Taking off. Landing.
All of these old-new experiences are so fresh and scary. Not because I haven't done them before. Not because we are afraid of the flight. But because this new life is a destination unfamiliar. Not as the new Jenny or Wil 2.0. Not with the new circumstances that make up our daily life or the realizations of things that may be out of reach forever post cancer. It's just we seem to have no map, other than just a grid piece or two, ahead to guide our steps. In fact, often, we feel like our total distance we can plan out is as far away as the next oncology appointment. The distance is starting to lengthen, but life is still lived a few months out. And then...life takes us down some more unexpected ER visits...and back to a feeling, a sense of urgency and fear, that we know too well.
I'm not certain that will ever change. Just as the feeling in my stomach, as the plane lifts off the ground, defying gravity, will always happen...the acceleration, rock and sway, that is but a normal part of takeoff...will happen. The turbulence, bumps. We will hold our breath, lean back into the headrest, engage our bodies in the defiance, and take off anyway.
I guess that's what we've been doing this whole time anyway.
Much Love.
All of these old-new experiences are so fresh and scary. Not because I haven't done them before. Not because we are afraid of the flight. But because this new life is a destination unfamiliar. Not as the new Jenny or Wil 2.0. Not with the new circumstances that make up our daily life or the realizations of things that may be out of reach forever post cancer. It's just we seem to have no map, other than just a grid piece or two, ahead to guide our steps. In fact, often, we feel like our total distance we can plan out is as far away as the next oncology appointment. The distance is starting to lengthen, but life is still lived a few months out. And then...life takes us down some more unexpected ER visits...and back to a feeling, a sense of urgency and fear, that we know too well.
I'm not certain that will ever change. Just as the feeling in my stomach, as the plane lifts off the ground, defying gravity, will always happen...the acceleration, rock and sway, that is but a normal part of takeoff...will happen. The turbulence, bumps. We will hold our breath, lean back into the headrest, engage our bodies in the defiance, and take off anyway.
I guess that's what we've been doing this whole time anyway.
Much Love.
