Goodbye, Plasma Cells; Hello, Neuropathy and Pneumonia

Ok. It's been two weeks since my last post, so here's an update to what's been going on.

The most important development is the confirmation that my blood tests show NO TRACEABLE CANCEROUS PLASMA CELLS remaining in my blood stream. There actually haven't been any found since Mid-November. I think it's amazing that modern medicine can target things so well and command the body to destroy and filter out the cancer so quickly. I'm so blessed to live when I do. If I had been born 100 years earlier, I would likely have not had any idea about the cancer and would have died at age 40 from pneumonia or some other ailment that became too severe for my body to handle because of a sorely deficient immune system. What a blessing to live now! Anyway, my blood being cancer-free should not be confused with being cured, as I am not. My DNA is still "broken," and without continued chemo and my planned stem-cell transplants, there will be no cure for me.

Last week Monday, the 17th, I began experiencing some pain in my hamstrings and the back of my knees. over the next few days the pain moved lower and lower through my legs until it reached my feet and stayed there. Now, my hands and the soles of my feet are frequently (if not, regularly) in pain unless I take Ibuprofen, Oxycodone, or a combination of the two. When I was at the BMT clinic this Wednesday, Dr. Mitchell said it's probably Stage 1 Peripheral Neuropathy. Nothing to be too worried about right now, but we need to keep tabs on it. The neuropathy is brought on by cumulative damage to my nervous system caused by Velcade, one of my chemo drugs. If the problem continues to get worse, they can modify my dosage, as stage 1 and stage 2 neuopathies can be reversed, but stages 3 and 4 are rarely reversible.

Last Thursday afternoon and evening, I began to show signs of a heavy cold and chesty cough. It failed to go away or even subside, and Sunday night I began to run a fever. Over the next few days including Christmas (Tuesday), my temperature fluctuated between 99.0 and 101.7 degrees, my cough became more persistent, and I began to hear and feel fluid in my chest...yes, even without a stethascope. On Wednesday, I was scheduled to go into the cancer clinic at Intermountain Med Center for bloodwork in the morning, then LDSH's BMT clinic in the afternoon for Day 1 of my final chemo cycle before my first transplant. I called the BMT clinic, and told them about the cough and fever, and they told me to come in that morning. When I left the clinic at about 2pm, I had been diagnosed with my second case of pneumonia since my cancer diagnosis and had my chemo cycle suspended by at least one week. I'm now on 750mg/day of Levaquin (an antibiotic) and am currently sitting in the BMT clinic as I write this for an IVIG infusion. IVIG is Intravenous Immunoglobulin, an almost-clear blood product that contains the combined immunities of over 1,000 people. As you might imagine, it's given to bolster my immune system not just for the pneumonia, but for whatever else it may have to fight, as its effects can last anywhere from a couple weeks to a couple months. They've suspended my chemo because, by nature, chemotherapy meds wipe out my system's infection-fighting ability with the destruction of my white blood cells.

One of my favorite nurses, a gal named Samantha, or Sam for short, is moving away and today is her last day here at LDSH. She became a favorite nurse a couple weeks ago when I was in the clinic for chemo and had to wait a while for the pharmacy to get it upstairs. She went on break and told Tony she was going to get some ice cream. When she asked him if he wanted some, I joked that I could really use some to help with my dry mouth and throat. I didn't think she'd take me seriously, but she went and got me a big scoop of vanilla ice cream. Here's a picture of Sam and Tony...

...And the ice cream Sam brought me. =0)

That's about all I can write right now, as they gave me some Benadryl before starting the IVIG. That just adds drowsiness to drowsiness, as I took an Oxycodone for the pain in my hands and feet before I came in this morning. I think I need to take a little nap now.

Cancer sucks!

This image was posted on Facebook by an old high school friend of mine. It prompted the following "little" rant from me:

Thanks to my old friend, Kym Chambers, for sharing this. I am so grateful to many of my old and new friends who "get" this. Cancer brings a completely new perspective to those who battle it every day. People compliment me on my positive attitude and outlook. People tell me they're inspired by me. People tell me the KNOW I will beat my cancer (as if I'm some pro football team playing against a bunch of 10 year-olds).

The truth is that cancer is the most frightening thing I've ever faced. I lie awake at night sometimes, not because of some side effect of the chemotherapy, but because I'm afraid of what life will be like for Noelle and my children if the cancer beats me. I'm inspired by my God and by my desire to be with my family for many more years before I "move on," and wonder how others can possibly be inspired by me, a 40 year-old man who hates the fact that he can't exercise, wrestle with his kids or bend over to tie his shoes without worrying about whether one of his bones will break because his cancer has made them so brittle; a man who has always taken pride in being among the hardest-working, highest-achieving people in whatever company he's worked for, who now struggles to work a full day or hit 50% of his daily goals. Everywhere I go, I have to wear my stupid mask - a constant reminder of the cancer - not because I'm sick, but because others who are don't know or care that they're breathing germs all over the place and that I could be hospitalized over something that their body fights so effortlessly that they may not even realize that they're sick or give it a second thought if they do.

Cancer sucks, in case you haven't heard or experienced it personally. I hate stupid cancer. There. How's that for attitude and perspective? Some might respect me less now. Fine. If you do, you weren't real friends anyway. Some may respect me more. Fine. You needed to hear this. Others may just be grateful to learn that I'm human and that I struggle with this. You're welcome.

Phew! So glad that's off my chest!

A Personal Visit from David A. Bednar

Today, my family had an experience that will stay with us for the rest of our lives. At 2:11 this afternoon, I received a phone call from our current Stake President, who will be released from his calling tomorrow morning in our Stake Conference. "John, it's President Tindle. How are you?" "I'm doing well, thank you." "John, are you and Noelle home this afternoon?" "Yes." "Good. I'd like to stop by and visit with you for a few minutes in a little while with Elder Allen and Elder Bednar. Would that be alright with you?" "Uh...yes, of course." "Great. We'll be by some time between 2:45 and 3:00...maybe a little after that. Will that work for you?" "Of course." "Great. We'll see you then."

Elder David A. Bednar is one of 15 men in the Church of Jesus Christ of Latter-day Saints who is sustained and ordained as an apostle of the Lord Jesus Christ today. These men are the president of the Church, his two counselors in the First Presidency, and the twelve men who make up the Quorum of the Twelve Apostles. If we were living in the year 45 AD, it would be as if I had been told that one of the apostles like Matthew or Peter or James would be visiting my home. Elder Bednar has been commissioned, as the apostles of old, to "go...into all the world, and preach the gospel to every creature. ...And they went forth, and preached every where, the Lord working with them, and confirming the word with signs following" (Mark 16:15, 20).

I called my family together and told them that we were to be visited by Elder Bednar in half an hour or so. Gratefully, Noelle keeps a very clean house, so there were no issues there. I shaved. Noelle did her makeup.  We and the kids all got dressed in Sunday dress. We had the kids all go to the bathroom, because we didn't want them to have to go during the visit. =0) Then, we waited. Isaiah was bored. Jenna was feeling sick. Emma, Michael and Abby were fidgety. Noelle and I worked really hard to keep ourselves calm so we could help the kids do the same.

When they arrived, I met President Tindle at the door. He smiled and said, "John, it's good to see you. Thanks for letting us come." (Like I would have said no...) "This is Elder David A. Bednar." (Uh, yeah. I know who he is.) "And this is Elder Stephen B. Allen, who's traveling with him." Elder Allen is an Area Seventy, and is assisting Elder Bednar with the reorganization of our Stake Presidency. They came in and introduced themselves to Noelle and the kids, asking them their names and ages, and paying them little compliments as they did so. I offered the couch to Elder Bednar, and he said with a smile, "That's alright. I think I'll just take the piano bench, if that's OK."

Their visit was wonderful. Elder Bednar began by asking me about my battle with cancer and the prognosis, and then asked me and then Noelle what has surprised us about our own selves as we've been going through this. He then counseled us to remember that the Atonement of Jesus Christ is not just about being made clean. It's also about being strengthened and comforted by the our Lord to accomplish things we could not accomplish on our own. Elder Bednar said that that is the very definition of the grace of God.

Elder Allen recognized Noelle for the burden she carries and told her that the fact that God trusts her with that burden is evidence that she is a choice daughter of God and that God trusts her.

My favorite moment of the visit was when Elder Bednar looked us straight in the eye and said, "I witness that the Lord is personally aware of you. He is mindful of you and all of your needs." When he said, "I witness..." the intensity in his countenance turned up a notch or two, and I could tell that he was speaking for the Lord as His commissioned representative. He assured us that blessings will continue to come to our family as we continue in faith.

There were a lot of other things said, and counsel given, but those are some of the things that stick out. Elder Bednar closed the visit by praying with and for our family. It was beautiful. No flowery language. No over-used rhetoric. Just a child of God praying to his Father in Heaven with sincerity and love. The prayer was not short, but all of the kids - yes, even Isaiah - were super good and super quiet and reverent. Before leaving, he gathered with all seven of us for a picture.

Well, it's only 8:45 at night, and I'm already fighting to stay awake. I really hope this post is coherent. I'll re-read it in the morning to see if I need to edit anything.