Early Morning Catch Up

It's 1:15 AM.  For some reason, I can't sleep.  Too hot, too tired, too sore, too busy in the brain... It all amounts to the same thing.  And since updating the blog has been on the top of my To Do list for far too long, that has become the priority this sleepless night.  Sorry for the delay.

Thursday, March 28, was my final iron transfusion at Huntsman.  Again, I will say that it was not the magic elixir I hoped and prayed for.  There was no outpouring of strength & energy like I wished, but that may have been a dream anyway.  The port worked like a charm, though, and I am more grateful each visit that I have it.  We'll see if I still love it when it comes time to draw blood.  So far, it has worked putting things IN...how will it be taking things OUT?  I was also grateful to have "T" as my nurse that day.  She was the nurse I had for my first visit to the Infusion Center when I started the IPI and she remembered me.  She wanted to know all the news--what was happening, why was I back, etc.  Very sweet girl.  There are certainly mixed blessings at being recognized there.

On Tuesday, March 26, I had an awesome experience that I have shared with quite a few already.  I was in the last half hour of my infusion when I overheard some people visiting in one of the infusion "pods" (there are 8 or 9 pods in the Center, each with four infusion chairs with their own TV, IV pole, etc.).  These people were joking and laughing as they discussed treatments & other related cancer subjects, and over the top of the pod "walls", I could see a young-ish man talking to whomever was sitting in the infusion chair.  I thought he was a doctor by the way he talked and joked.  I also heard him offer candy to the patient sitting in front of him, and I remember thinking, "Well, that's different!"  I was doing some surfing on my iPad, so didn't realize that he had made his way over to my pod and was talking to the guy receiving treatment behind me.  Now I started thinking he was a volunteer or something like that--once again, he offered this guy candy or chocolate.  Everything he said was hopeful and positive and affirming, just what a cancer patient wants to hear and just what a doctor or volunteer should offer.  The guy behind me was telling him that he was the father of 8, was currently unemployed, and that he had decided his "job" was to get better for his kids.  I heard Mr. Candyman say that he, too, had battled colon cancer and was first diagnosed when his daughter was about six months old, and that at the time, he wondered if he would ever see her do any of the normal things kids do.  Now, she was five and he loved being there to see her grow up.  Next thing I know, he has walked into my pod space.  Nice-looking guy, 30-ish, earring in one ear, tattoos, wearing a black tee shirt that says, "#%*$ Cancer" across his chest...and he is wheeling around his OWN IV pole!  He's actually receiving his chemo treatment as he visits each pod!  On the pole are three bags of candy--Laffy Taffy, Kit Kat bars, and M&Ms.  He asks me if I'd like a piece and I go for the Kit Kat.  He asks me how I'm doing and I tell him that I'm okay.  He laughs and says something about when a cancer patient says they're okay, they're really not okay; if they were really okay, they'd say something like, "I'm doing great!"  I laugh, too, and give him the Reader's Digest version of the past two years.  He says he's sorry and I can tell it's sincere.  "Being a member of the Stage 4 club is not something you want to aspire to," he says, and I agree.  He tells me a little bit of his story, aware that I've probably heard snippets of it already as he's made the rounds, and then tells me how he uses laughter and humor to make it through this ordeal.  He admits to being a jokester and that he loves to prank his doctors the most.  He says he comes to most scans in costume--once as a lion, once as Cupid, once as a black cat--and that one time, he was chased through the building by security, who thought he was just some nut case on the prowl at Huntsman!  I laughed and laughed.  Then, he got serious and said that people are always asking him if he ever has "bad days", and he says, "Of course.  There are times I'm driving home from another round of chemo and I'm just bawling my eyes out.  But, then it passes and I say, Screw cancer, you're not going to beat me.  I'm fighting, so just get used to it."  He's had numerous surgeries, countless rounds of chemo (thousands over the past 5 years!!), and "still, there are mets to be conquered."  Wow.  I'm blown away.  I don't know if I could do what he does.  I sit in my pod and read and play on my iPad and allow time to pass, but this guy...this guy is improving the very air around him by sharing himself.  He asks me what my next steps are and I tell him about the scans coming up and the trial we want to get into and he sincerely says that he hopes and prays the scans are "clean" and I'm able to do the trial and get all the help available to take away the cancer.  It touches me deeply.  I wish the same for him.  As he leaves my pod and runs into my nurse, he stops and tells her thank you for the fantastic job she's doing and for all the help she is to her patients.  I can feel the love from where I sit.  And it's not just her--he reaches out to techs and other nurses and tells them how much he loves them, too.  And they all love him.  I love him now, too.  He is a powerful inspiration.

So, after I've told a few people about my experience with this guy, I'm reading on Facebook the next day, and there he is!  "Beautiful celebration for Daffodil Days at Red Butte Garden, cancer survivor Dov Soporin brought tears to everyone's eyes as he spoke of love..."  I know Dov! (pronounced "dove", as in the bird)  I wish I had been there to hear him speak.  I posted a comment and later someone from the radio station sponsoring the event said they were going to try to get a transcript of his speech.  I immediately asked for a copy.  It was amazing and certainly no coincidence that this all happened and involved me at the same time.  I needed his strength to boost my own and I am so proud to say I know him.  Thank the dear Lord for people like this who cope with their disease by lifting others.  I hope to get to meet him again someday and thank him for his great service to all of us.

I'm doing fine, really.  Maybe not great, but well enough for now.  Still trying to eat and gain weight--wow, didn't think I'd ever be saying THAT.  Sometimes, I catch a glimpse of myself in the mirror (usually when I've stepped out of the shower) and I think I look like a Holocaust victim.  Much too skinny, no muscle in my puny arms, and "elephant skin" hanging all over in the worst places.  And then there's the port that sticks out below my collarbone...  Happily, the pancreatic enzyme pills are still working and the diarrhea is gone.  Now that the spring weather is upon us, I'm hoping to get out more--maybe teach Einstein what it means to be on a leash and WALK instead of trying to trip me up with his jumping and leaping.  CT scans, brain MRI, and blood work are Friday, April 12, with a follow-up visit to Dr. Grossmann on April 16.  Pray for good results.  Iron up, weight steady, no new mets (metastatic tumors) anywhere, and progress for the trial.  Simple requests, right?  Heavenly Father can do it.  He can do it all.  And He will, I know it.