Disclaimer: In my first post, I believe I said there were 3 rounds….well, I feel like there were really 4.  Sooooooo.   Round Two.   We had been living the cancer free life for 9 months, and John even got the all clear CT scan in March of 2014.  A month or two later he started having some abdominal pain.  We went to the ER a few times, convinced that he needed his gall bladder removed.  While he did, in fact, need his gall bladder removed, he also had a mass of lymphnodes in his abdomen.  In June, we spent 3/4 Tuesday’s at the OSF surgical floor.  One to have a needle biopsy of the nodes in his abdomen, a second to have an ACTUAL biopsy of the nodes and have his gall bladder removed, and a third getting a port placed so that he could start chemo again.  By the end of the month he looked like a horrible stabbing victim.   As if I, or someone, had tried to stab him to death, and did a REAL bad job!  A few side stories before we move on here.

A) Don’t EVER let a doc talk you into a needle biopsy!  I believe over the course of the 4 year cancer journey, John had 3 different needle biopsies, and all were inconclusive!  Two of which, he had to go back under the knife  a week later!

B) If someone you love needs chemo…. just bite the bullet and get a port!  It was FAR easier for the chemo to be administered as John was a hard stick.  The port can also be used for blood draws and comes in real handy if there are any hospital stays, as long as the nurse accesses it properly.  For those unfamiliar with a port it is inserted into a “pocket” in the chest, somehow connects into a big vein, and then has a small part that sticks out, which is what a nurse would feel to be able to access the port.  It’s good for the patient, is a tad freaky for the wife/caretaker to touch.   Its like an extra nipple or something.   I touched it once…. and it was weird.

OK, back on track.  During this time, John was in severe pain and couldn’t eat worth a hoot for a good month.  We had to go get hydration and electrolytes for 4 and 5 days in a row to keep him from getting dehydrated as every time he ate, he would get sick.  Back in the day I would totally gag at the sound of someone puking.   By the time he started chemo, I would just keep eating my dinner as if everything was perfectly normal.   I actually grossed myself out just thinking about this right now!   Bleh.   Anyway, it was recommended for us to see a Dr in Chicago to determine if he should have a Stem Cell transplant, a form of bone marrow transplant.  John had originally had Non-hodgkins Lymphoma (There’s like 70 different subtypes) and then relapsed with Hodgkins Lymphoma.   What’s the difference?  I still can’t explain it…..and don’t ask an oncologist to explain it to you!  That’s just a bad idea.  Typical patients would have hodgkins, and then relapse later with non-hodgkins. Clearly, John was FAR from typical!

Dr Smith at the University of Chicago recommend that John have an autogulous transplant.  After undergoing several doses of chemo and a PET scan to ensure that the cancer was gone, he started harvesting his own stem cells.   They put in a central line, and he harvested inpatient for a total of 6 days.  He had a central line for about a month and a half prior to being admitted for transplant.  Here’s a fun fact.  He actually had the central line in place at his 20 year high school reunion!  Don’t worry, even though I was super drunk, we still got it flushed when we got home from Steak N Shake!  =)

He was admitted on October 22, 2014 and on October 29, 2014 after a week of miserable strong chemo, he had his first re-birthday.  That day he got a new immune system. He spent 19 long days in his hospital room, and was not allowed to leave the floor.  They wanted him to walk, so he would feel better, but his comment to the nurse was “Now I know what a lion feels like in the zoo!”  Only he was hooked to an IV pole as he paced the room.  After a total of 22 days, he was discharged.  In shorts and a winter coat, and demanded that I take him to Taco Johns.  Taco Johns is really not what I think of as the most sanitary of places, but all he wanted in life at that moment, was a bean burrito, so I obliged.  He tore into it as we headed home, and was immediately pissed that they gave us a beef burrito!  On December 22, he was declared cancer free, yet again!  What an AMAZING Christmas gift.  Cancer Free, and ready to take on the new year ahead of us…….or so we thought.

 

 

 

 

Let’s start from the beginning, shall we?   It was January 2004…..ok, I kid.  This WAS when I first put the moves on John.   He told the story differently, but if, “I’m going home, are you coming with me?” isn’t the greatest pickup line ever, I don’t know what is!  (Sorry, Mom!)  I feel like for people to get the full concept of where I am in life, I need to start from the beginning, and go through each round of the big C, and I will try to give the Reader’s Digest version.  John’s diagnosis wasn’t easy.  It started with a cough that wouldn’t go away in the Fall of 2012.  He was prescribed antibiotics for walking pneumonia, and then a CT was ordered.   We should have known something was up when he missed a call from OSF only hours after his scan.  His family Dr called him the next morning (yes, the DOCTOR, not the nurse) and said “worst case scenario” this could be lymphoma.  We saw a pulmonologist, Dr W…who is AMAZING, and he did a brochoscopy to get some biopsies of the enlarged nodes in John’s lungs.  When I say amazing, I mean we pushed off the procedure for two days because we were headed to a Dave concert…… and sure as shit he played Dave in the procedure room as he was put under!!   While all of this was happening with John, I had a few issues myself.   I ended up with an MRI of my BRAIN (yes, there’s one in there), and was put on medication to reduce my prolactin levels, as well as meds for PCOS.  Yeah, we have this trend of having more than one thing happening at a time.  At any rate, we ended up at the oncologists office, a few biopsies later, samples sent to Mayo clinic and with a final Stage IV diagnosis and chemo started on January 31, 2013.  I have this thing with dates……..I just remember them for some reason.  I wasn’t at the clinic with him when his treatment started.  He called me as they were preparing to start the drugs.  We had to have a difficult conversation, as the nurse had informed him that this drug could potentially sterilize him.   We could have delayed treatment, but made the decision to proceed since he was literally coughing about 45 minutes out of every hour at this point.  Yeah, try watching TV with that going on!  We didn’t know at the time, but we became the most favorite patients of this nurse…..and she quickly became one of our favorites too!

John took these rounds of chemo like a champ!  Six rounds of RCHOP and we should have been done, but after round 4 he ended up in the hospital for 8 days.  On the second or third day, the Boston Marathon bombing happened.   He had nothing better to do than watch TV, and we joked that he could have had the case solved just by watching the media!  He ended up having some treatments with a friends mom, who also had lymphoma.  I can still hear their conversation clear as day, “Man, chemo farts are the worst!” to which John replied, “I thought it was just all this Mexican food we have been eating”   While I HATED every second of John being sick, I was so happy to know he had someone to talk to about his treatment, who knew exactly how he felt.  In fact, every time he was sick, we knew someone who was also going through treatment.  July 8, 2013, we got the “complete response” news.  Ya see, with lymphomas, the word remission isn’t used until you are cancer free for 5 years.  (sidenote, lymphomas and leukemias are staged differently than other cancers!)   At any rate, we celebrated that complete response with a party with family and friends, and said Peace out Lymphoma, see you never!

In celebration of John being healthy, we took a few trips to Tennessee and hung out with great friends.  We went to the Grand Ole Opry, toured Jack Daniels, and shut down Nashville!!  A month or so later we were in Memphis, drinking on Beale St, and touring Graceland.  We were thankful.  We never enjoyed our time together more.  We learned during Round One that we have awesome friends and family.  We learned that only you, (or perhaps your nagging spouse) knows your body the best, and if something isn’t “normal”, freaking get it checked out!   Cancer didn’t define us, it didn’t keep us trapped in the house. (we had to get all that mexican food from somewhere!)  It taught us that you have to put one foot in front of the other, and make it work!  We stayed in the couple of days after treatment, and then resumed normal activities until the next appointment  More than anything, we learned we had to Just keep livin’.  Maybe I use it too much… but it’s more than a movie quote to me.  Yes, people, its a line from Dazed and Confused!!  When I met John, he had JKLIVIN on his license plates…..it resonated with him LONG before cancer.   It just became our motto because that’s all we knew how to do!   And there ya have it…. Round One.