#RoundFour

SPOILER ALERT:  This one doesn’t end well.   On January 6, 2016, John was admitted at the University of Chicago.  He would be inpatient for about 3 weeks, so we had rented an apartment about a mile from the hospital as we were required to stay nearby for 100 days post transplant.  He started chemo to rid his bone marrow, and then on January 14th, he received the first bag of Cathys stem cells, with a cord blood chaser.  Only special people get to have one re-birthday, but REAL special people think they need a second re-birthday!  Its pretty amazing how what takes 6 hours to harvest, takes only 10 minutes to infuse.  For those wondering, the actual transplant itself is pretty anticlimactic!  John wound up with RSV while he was inpatient, so he was placed in a negative pressure room so he could keep his cooties to himself.  Visitors had to wear a mask and gown as to not spread the virus to the other patients.   U of C actually now has FORTY transplant beds!  John being John signed up for a study in which he could have gotten a real treatment, or a placebo drug.   That’s the thing about him.   He ALWAYS thought about what he could do to help others who were also sick, or those in the future.  Ironically, he ended up being discharged after transplant on January 31st.  4 years to the day of when he start chemo for round 1!  (yeah, I have a thing with dates)  About a week later we ended up back at the hospital for a fever, and what ended up being an infection landing him in the ICU.  It was pretty scary, because we went from the general oncology side of the floor to the transplant side, and within 10 minutes, there was about 15 people in his room, pumping him with fluids, and shipping him to the ICU.   I wasn’t sure what to think, but where the hell is my xanax!  (yes, I function b/c I have been medicated for years!!)

Once John was about 60 days post transplant he was feeling like getting out and about.  We made a trip into the city on a windy day (weird for Chicago) and saw the bean and got a Starbucks.  We drove around to many of the places where John Hughes movies were filmed, or went to a mall just to get a little exercise, and get him out of the apartment.  As we approached day +100, we got to come home for “a day”   Clearly John wanted to push it, and we stayed home for two nights before driving back up for his clinic appointment.  A bunch of friends were out in Olivers garage watching baseball, and I will never forget the looks on their faces when we walked in.  We hadn’t told anyone that we were heading home…….I just remember shouting “be gentle, don’t hug him!!, he still has a central line”  A central line that you could nearly jump rope with!  Ha!  April 22, on day +99, we got to move home for good, but were still required to go to Chicago for weekly appointments.

Between the time living in Chicago, and the times we had to drive up for clinic visits, and the additional hospitalizations, I drove to Chicago 40 times that year.   That doesn’t include the trips that Tom made with him.  John ended up with Graft vs Host disease in the form of a rash, and then GVHD of the gut.  I found it funny that when he had the rash, they did a small biopsy in clinic and put a stitch in it.   But when he had a bone marrow biopsy about 2 hours prior, they just slap some gauze over it.  The dermatologist who did the skin biopsy asked if he wanted me to hold his hand.   Ummm no thanks, those bear paws will crush me!  Anyway, about a month later he ended up testing positive for influenza.  They treated him with multiple medications over the course of roughly four months.  He spent Thanksgiving in the hospital, but insisted that I come home to spend the day with my family.  I did that, and then crashed the Thanksgiving at the Martins, which we now joke that its not a holiday unless I show up!  He was released to come home a few days after, but he was so super weak we had to have several friends come over to help get him into the house…..he sat in a lawn chair, and the guys carried him inside.  A few days later, after a call to Dr G’s office and texting the nurse some pics of johns horribly swollen legs, we were told to go back to Chicago.  I took the call from the clinic down in the basement, and immediately started sobbing.  It was so bad that the nurse started crying with me before Dr G took the phone from her.  He explained that us being with the transplant team was the best thing for us to do, and that he thought if he could help John, that he would do it.  I went back upstairs still sobbing and John asked what was wrong.   I said “we have to go back to U of C” and his reply, through tears of his own, was “Christ, I thought someone died, don’t do that to me.”

Upon his discharge from that U of C visit, he went to a “rehab” facility, which in Peoria is a nursing home.  He spent about 2 weeks in that shithole and I collaborated with both Dr G and Dr B via a direct line to the bat phone.  We were there until Christmas day, when he was so sick, he couldn’t keep food down, and was very weak.   We went to the hospital after having the nursing staff call for an ambulance.  He was admitted straight to the ICU.  After the holiday, I was able to talk to the nurse in Chicago, and John was transferred back to Chicago, by HELICOPTER!  I frantically packed and drove to Chicago and when I arrived, John said, “Well, you made good time”   Uh, yeah, I had made the trip so many times, I could drive it in my sleep, and lets be real, I’m not a good driver by any means!  While I HATED the time we had to spend at U of C, I am beyond grateful for the care he received there.  The staff was AMAZING, and I was always recognized by the nursing staff when we were there.  When John was admitted to the ICU, one of the charge nurses stopped down to see him and tell John they are sending us good vibes from upstairs.  Dr B is the most amazing Dr.  He always stopped in to see John, even when he wasn’t on service, and I mean, who gives a patient their cell phone number?

After spending 22 days in ICU, I was preparing to leave to head home for a couple days, as my mom was going to come the next morning to stay with him.  He hadn’t been eating much for the entire time he was in ICU.  He was very week and sleeping a good bit of the time.  He had been getting very sad when I would leave at night, and didn’t want me to go,  He had made comments that I can’t even recall, which is crazy since I can remember seemingly everything.  The night I was planning to head home, he had what I can only describe as an episode.  It was by far the most frightening time of my life.  Remember how he had been sent to ICU before?   Yeah, this was 10 times worse.   One of the drs took me to the waiting area so that they could do some testing.  I called both sets of parents and they packed bags and came to Chicago.  It seemed like an eternity… the only thing that kept me sane was Sherrie.  My go to in every situation.  My safe zone.  She just understands things like nobody else.  I talked to her, sobbing, and waiting.   Waiting for parents to get there, waiting to hear from a doctor.  We left the hospital at 3 am, and were all back by 8 or 9 the next morning.  We talked with the doc who had been following him during his time in ICU.  Ultimately, had they not intervened the night of the episode, John wouldn’t have made it.  Our parents wouldn’t have gotten to talk to him, or hold his hand before he let go.  His last communication with me was when he had my mom come get me from the waiting area.  He pointed at me, and gave me a thumbs up.  Yes, I was going to be ok.  A little over 24 hours later, he took his last comfortable breath with us all in the room with him.   It is the absolute most miserable 3 days of my life.  With that being said, I live my life with no regret.   I know, with no uncertainty, that he fought as hard as he could, and when he couldn’t fight, I fought for him.

This post by far is the most difficult to type.  This blog is therapeutic for me.  I want people to know John’s story.  I know its somewhat “raw”, but this is my life.  I’m a 37 year old widow, who lost my very best friend, my best drinking buddy, and yeah, I’m gonna say my soulmate, far too soon.   I thank God every day for the time that I had with John, and the people who are in my life because of John.  I have the most amazing support system, and most of them are because of John.   I mean, EVERYBODY LOVED JOHNNY MAC!  I can’t imagine what my life would be like had John not been in it.   He made an impression on everyone he met, lived life to the fullest, sick or not.  He was 100% go big or go home in everything, including cancer.  And lets remember, he did marry me, and I feel like I’m a pretty good catch!  Who else would plan a St Patricks day wedding and allow, no request, green beer?  With this being said, I miss him every day, and still find myself wanting to text him when something funny happens, or maybe when i drive by the tye dye tent.   When did they move to Pekin?   Is there a better customer base on 8th St than in Creve Coeur?