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.

Side Effects

Dry, dry, dry! That's how my mouth and throat feel all the time now. One of the wonderful side effects of my chemo is a consistent dryness that won't go away by taking a drink. The only relief I get is when I have a piece of hard candy in my mouth. That gets the saliva flowing, but once the candy is gone, the saliva stops and I'm sucking on the floor of the Sahara again.

I've also been dealing with mental fatigue and what you might call "brain fog" lately. It's been really hard to focus at work, at home, while driving. Don't worry...I stay off of the freeway when I drive to and from work.

Other than a couple other minor side effects I won't get into, life on chemo keeps humming right along. The hardest part is accepting the fact that there are so many things I just can't do anymore due to weak bones or low energy levels. It's frustrating to not be much of a help around the house and to not be as productive or effective at work. I've always derived great satisfaction from being one of the ones who leads the way professionally, and that's not the case now. I've always hated the times when Noelle has felt like a single mother because I have worked nights or traveled for work and not been around to help. Now I am around, but can't help with a lot of things, so she still feels like a single mom a lot. I think that's the worst side effect of my chemo. Noelle gets the worst one an she's not even the one with cancer. Cancer sucks.

The Tender Mercies of the Lord

This is one of my favorite General Conference talks ever. Elder Bednar will be at our Stake Conference next weekend to reorganize our Stake Presidency. I won't be able to be there, due to my cancer and my weakened immune system, but his words encourage me now. This was his first full-length General Conference address after being called to the Quorum of the Twelve in October 2004. It is still referred to and discussed regularly today among Latter-day Saints (Mormons) in passing or in detail. The impression left on the Church by the Lord's newest apostle was striking and unique. In his first address the previous October, Elder Bednar had said of himself, "As one of the weakest of the weak, I testify that God lives. I testify and witness that Jesus is the Christ. He is our Redeemer and our Savoir, and He lives. ...And, brothers and sisters, the heavens are not closed." The tender mercies of the Lord spoken of by Elder Bednar just six months later exemplify that "the heavens are not closed." I have likewise felt to testify, "as one of the weakest of the weak," of the same as I've contemplated the tender mercies of the Lord shown to me and to my family surrounding my cancer diagnosis, early stages of treatment, and the positive attitude I have been able to maintain through it all. I thought I would share this with any who are interested. You can read it, watch it or just listen to it. Watching it is my preference.

Elder David A. Bednar: The Tender Mercies of the Lord

Eight Weeks Down. Eight Weeks to Go...?

It was eight weeks ago Tuesday afternoon that I received a phone call from my orthopedist that changed my life and that of my family forever. I called him and told his receptionist I didn't need to come in to review the results of the MRI on my shoulder, because I knew it would heal with time and was 99% sure there was no structural damage. He called me back that afternoon to tell me I was right that there was no structural damage...but that there were issues with my bone marrow. That led to blood work the next day and, eight weeks ago today, a phone call from the orthopedist on my way home, saying that my white blood cell counts were through the roof and my blood pathology was abnormal. Eight weeks. It's amazing how life and what is considered "normalcy" can turn on a dime. 

Now, "normalcy" for me consists of medicine every morning and night, chemotherapy infusions four times a month, weekly blood work, a big, filtered face mask everywhere I go, and a constant fear of anyone around me being sick with anything. A simple cold or flu, for instance, that your body can fight quite well could land me in the hospital simply because I don't have sufficient healthy white blood cells to fight it like you do. Whenever one of my kids has a fever, I can't be around them, can't put them to bed, can't hold them or rock with them, can't help my sweet Noelle take care of them. The things I want to do as a parent, I can't. Every day is full of constant reminders that I have cancer, from my medications to my face mask, from the doctor's bills I'm trying to get put on a payment plan to the fact that I can't even stop off at the store to pick up milk on the way home. 

Over the past few weeks, I've found myself getting pretty perturbed with people who smoke. I walk around the outside of my building on my lunch break, or leave the building to go to my car at the end of the day, and am so grateful to not have to wear my blasted face mask. But what do I encounter? Smokers. And all I can think is, "Are you kidding me?!? I have done NOTHING to get this awful disease. I've never been exposed to high amounts of radiation. I've not led a physically destructive lifestyle. I didn't want cancer. I don't deserve cancer due to anything I've done. I'm fighting for my life every moment of every day. People ask me when they see me wearing my face mask if I'm contagious, when I wear it because they might be and aren't considerate enough to stay home or put a face mask on their own face. Cancer sucks big time and has turned my and my family's life on its head. AND HERE YOU ARE, DOING SOMETHING THAT INVITES CANCER! If you only knew how awful what you are inviting is, I wonder if you would find a way to work as hard to convince yourself that you have to kick the nasty habit as you work to convince yourself that the addiction you've created against your better knowledge is stronger than your willpower. What a cop out. What a sad, sad joke you play on yourself." To my friends and family members who smoke, I do not apologize for what I feel, or for my candor in writing about it. Smoking ultimately led to the cancer that ended my biological father's life at the age of 60. Are there other self-destructive, cancer-inducing behaviors that people participate in that I could harp on? Of course. But those are not as evident, and don't put others who are physically close by at risk for the same consequences. Smoking is a nasty, expensive habit that I wish would go away. Why someone would choose to do it, inviting the thing I have to fight every day to overcome and that scares my wife and children to such a degree that they can't even articulate it, I'll never understand. Please know that I don't condemn you; I just don't understand your choice and I never will. When and if the cancer or other health effects from the smoking come, know that I'll be able and willing to empathize with you over the awfulness of chemotherapy, treatments, hospitalizations and knowing far too many medical terms for someone who has never stepped foot inside medical school, but I will not be able to sympathize over what led you to that point. I will only have sadness for you and your loved ones that it is something you could have and should have avoided. Phew! I'm glad I got that all out!

So, after eight weeks of fighting this fight, now I look ahead eight weeks to mid-January, which is when I will complete my third cycle of my current 21-day chemotherapy regimen of Dex, Velcade and Revlimid. At that point, Dr. Petersen is anticipating that I'll be ready for my auto stem cell transplant (Read my last post if you want the low-down on auto vs. allo transplants). On certain levels, the past eight weeks have flown by; on others, they've been the longest eight weeks of my life. The next weeks don't figure to feel drawn-out, though, as we're now in the midst of the Christmas season, and that always tends to fly by. My parents are coming out for Christmas for about 10 days and staying here, so that'll add to the busyness and speed with which the days go by. The fourth quarter in the equipment finance industry is the busiest of the year and so the last six weeks of the year will be very busy for me as well. So it's not eight long weeks; its just eight weeks before I probably stay in the hospital for two to four weeks, then at home for another two weeks. If my life is different now, then oh, how different it will be then! As I've mentioned before, the doctors, nurses and aides at LDS Hospital's East 8 (the half-wing devoted to the BMT program) are wonderful. However, I HATE BEING THERE! I hope I'll be able to sleep away a good portion of my time there or watch a million movies to help the time pass. The possibility of spending the better part of a month in the hospital is just not something that excites me. In fact, it upsets me a great deal. And, knowing that an allo transplant is the second step (though perhaps not immediate), with a much longer hospital sojourn ahead of me after that, is really not exciting. BUT in the end, if it's what I have to do to cure my cancer and do what I need to get done before leaving this earth, then so be it. I just hope that I'll be able to thrive post-transplant by focusing my energy on healing. We won't know for sure if mid-January is when the auto transplant will occur until we get there, but Dr. Petersen sounded pretty optimistic about it when I spoke with him last Wednesday.

Today is Thanksgiving Day in the United States, so I figure it would be appropriate to end this post with some things I'm thankful for. I'm thankful for the family I have created for myself (with Noelle's and God's help, of course), and for the joy they bring me. Noelle, Abigail, Michael, Emma, Jenna and Isaiah are all inspirations in multiple ways. I'm thankful for parents who taught me the Gospel of Jesus Christ from the time I was very young, and showed me the value of faith that is simultaneously simple and profound through the way they have lived their lives. I'm thankful for friends, both new and old, near and far, who motivate me and cheer me with words of encouragement and humor. I'm thankful that friends, family and God have not forgotten my wife and children as they have remembered me. I'm thankful for medical professionals who are dedicated to the process of my treatment and ultimate healing, and for the technology, knowledge, medications and facilities that allow them to work with me to that end. I'm thankful for an employer that has been overwhelmingly supportive, when they have every legal right to limit my pay and benefits to protect themselves. I am thankful for the gift of music, which has a very unique way of lifting my soul when I'm down or helping me express the feelings in my heart when words alone won't do. I'm thankful for the gifts of technology, which allow me to blog, learn, and communicate "in real time" with others. I'm thankful for the injury to my shoulder which led to my cancer diagnosis. I'm thankful for food, and that I can still eat it and enjoy most of it. I'm thankful for my home, my car, and the other material goods with which God has blessed me. I'm very, very thankful for the beauties of the world around me here in Utah. The beauty of the mountains, canyons, lakes, waterfalls and changing of the seasons are amazing. I love California and what it offers from a natural perspective, but Utah has some unique qualities that have grown on me quite a bit. I'm thankful for good books, including God's words revealed to His prophets as recorded in the Scriptures. Those precious words lift my heart, inspire me, and grant me added perspective and strength every day. Most importantly, I'm thankful for my Father in Heaven, for His Only Begotten Son, Jesus Christ, and for the Holy Ghost, who testifies of them. I'm grateful for their eternal love and support. I'm thankful  for the knowledge I have of how they work together for the good of their children, for my understanding of why they allow their children to suffer from time to time, and for the faith I have at the foundation of who I am that allows me to accept their will and avoid needlessly wasting time asking the question "why me?" and instead ask "what do you need me to learn and do now that I'm in this situation?" I have but one life to live on this earth. I'm thankful to know that with their help, I can make it as full of meaning - for me and for others - as possible.

Chemotherapy Cycle #2 Begins

On Wednesday, November 14th, I began my second cycle of chemotherapy. There's been a slight change to my "chemo cocktail." One of the meds, known as Cytoxan, has been swapped out for Revlimid, the one that the doctors wanted to start me with in the first place. unfortunately, Revlimid takes a while to order in, and isn't a med that even hospital pharmacies have handy, as it's a highly controlled chemo med that the company that makes it makes people jump through a bunch of hoops to get. Supposedly, it'll be worth it, though. Revlimid, Velcade and Dexamethazone together make up the most commonly-used "chemo cocktail" for all forms of Multiple Myeloma (MM), including Primary Plasma Cell Leukemia (pPCL). But now that the cocktail has changed, so may my side effects. Hair loss is a potential side effect that went away with the Cytoxan, so it looks like I'll be keeping my hair. =0) Other side effects I'll be watching for with my medical team at the LDS Hospital Blood and Marrow Transplant and Acute Leukemia program are peripheral neuropathy (loss of sense of touch coupled with chronic pins-and-needles and/or burning sensations) in the hands and feet, and gastrointestinal issues. There are other side effects that may come, but most are pretty manageable...with other meds. It's kinda funny. I have a plastic container about the size of a shoe box on my bedside table shelf that's about 3/4 full with my regular daily meds and my "what-if" meds. What if I can't sleep? I've got Ambien. What if I have pain (and don't need to work or drive)? I've got Oxycodone. What if I get hiccups from my steroids (Dexamethazone)? I've got Baclofen. What if I'm nauseous? Yeah...I've got 3 different pills for that, too. What if...what if...what if...? Pills...pills...pills.

On Wednesday, I ended up spending about 3 hours at the clinic for blood work, Zometa (a monthly bone-strengthening infusion to help with the bone brittleness caused by MM), Velcade, and an hour-long personal consultation with Dr. Finn Petersen, the director of the BMT program at LDSH. Awesome. I couldn't believe he took all that time just with me. He discussed my new cocktail and it's cycle (21 days in stead of 28 days), side effects, and my projected plan for bone marrow stem cell transplants. He brought in a couple articles from different Oncology journals and discussed everything from mortality and morbidity rates with the two different kinds of transplants to different time-tables between transplants, from a couple months to a few years. He shared the results of research that has been done specifically regarding pPCL. He shared a very recent (Sept 20, 2012) article with me called "How I treat plasma cell leukemia," written by four of the world's foremost experts on the disease. All very informative. Now, Noelle and I have to come up with a plan. We're 99% sure we'll go with an autologous, or "auto" marrow transplant (using my own stem cells) first. Then would come the allogeneic, or "allo" (donor stem cell) transplant a number of months to a number of years later. We have to decide which option is the best for us. One of the benefits to waiting a longer time between transplants that was highlighted in the "How I treat plasma cell leukemia" article is that the patient is allowed a longer remission (in most cases) between transplants with a pretty high quality of life. Also, waiting allows for further research and the development of newer, more advanced treatments and post allogeneic-transplant care. With an allo transplant, there are a lot of risks involved, up to and including relatively high morbidity (illness) and mortality (death) rates. It can be difficult to discuss these things, but it's important to know and understand what's involved. The truth of the matter is that the only real option if we want a long-term (potentially decades-long) cure is to go with an allo transplant. With an auto transplant, there's typically a state of remission following the transplant, but the cancer will ultimately come back, as my stem cells will begin to produce the cancerous plasma cells sooner or later. Some pPCL patients (typically the older ones) simply opt to do two or three auto transplants until their bodies begin to reject all chemo meds they're given, at which point they just pack it in. With the relative age of me and my family and the things we still want and need to accomplish before I leave this earth, that's not the route we want to take. So, we have some decisions to make regarding the timing of the allo transplant, as there are some suggested benefits elsewhere to doing the allo transplant very closely following the auto one. Lots of prayer and fasting will go into these decisions, as you might imagine. I was SO INCREDIBLY GRATEFUL that Dr. Petersen took so much time out of his day to spend directly with me. He had even made a personal phone call to the primary expert among the authors of the "How I treat plasma cell leukemia" article, and they discussed MY specific case "for quite a while." Amazing.

I feel so blessed to be the unique patient being treated by the folks in the BMT program right now. pPCL is such a rare form of MM that in all their years treating MM, they've never had a patient with pPCL. They're doing so much to both learn for themselves and instruct me on their findings. I feel like every doctor, physician's assistant, nurse practitioner, nurse, nurse's aide and receptionist knows me personally. It's kinda fun to feel so "special," though I must admit I wish it were for different reasons. =0)

Right now, based off of how well my cell counts have been responding thus far, Dr. Petersen is anticipating that we'll be ready for my auto transplant in mid- to late-January, after my third Revlimid cycle (and 4th chemo cycle overall). That seems so soon - just two months away. Wow. It's amazing how quickly life changes. In my first 40 years of life, I've had no major surgeries (only had a couple moles removed as a precautionary measure), and been medicated only for flu, bronchitis and pleurisy. In the last five weeks, I've consumed more medications than in my entire life leading up to that point. Life is different, but I'm so glad I was born when I was, to be able to benefit from modern medicine and techniques to combat my cancer. 

Overall, it's been a good week. I have been able to work every day and get some things done there. Some accounts I've been working on for several months are finally going to pan out with some nice sales. Here's hoping, as I'll be needing those commissions to help us through financially when I'm recovering from my auto transplant in a couple months. My recovery time should be from 4 to 6 weeks long, between time in the hospital and time convalescing at home.

A HUGE blessing that I recognized yesterday is that my diagnosis came this year, rather than last. Last year, I was self-employed and WAY under-insured for something like this. We're talking about tens of thousands of dollars difference in medical costs. Like I said, it's a HUGE blessing that I'm working where I am with the insurance I have.

Earlier this week, I received a large padded envelope from my old high school friend, John Lang, and his wife Kathy. They have San Francisco Giants season tickets, and attended the first World Series game this year. That night was Stand Up To Cancer night. John and Kathy sent me the World Series official program (about the size of something like Cosmopolitan Magazine), two StandUpToCancer.org rubber bracelets (which Noelle and I put on immediately), and two pins commemorating the Giants' postseason run. What a great, thoughtful gift. The photo below is from the World Series game they attended. Thanks, John and Kathy!

Energy Levels, Side Effects and Blessings

This week has been pretty good, overall. As I mentioned at the end of my last post, my hair had been holding strong. I was told that if it was going to fall out, it would be by about 3 weeks into my chemo cycle. That was Wednesday, and I've still got a full head of hair. Last night, a friend of ours who is about to graduate with her cosmetology license came over and cut my hair, which was beginning to look like a bush. Thanks, Sam!

At lunchtime on Wednesday, I got a phone call from my old professor, voice teacher and friend from my days at BYUH, Dr. Jim Smith. He and his wife, Linda, were planning to come up to visit Linda's sister in a nursing home here in Taylorsville that day, and they wanted to stop by to see us, as well. Jim was surprised that I was at work, but I told him I'd be home around 5:30. I invited them to join us for dinner, and he said, they wouldn't let us feed them, but instead they would feed our family. They're just like that. Always giving. So, they came Wednesday night, brought us pizza, got to know the kids a little (the kids all love them now), and we talked for quite a while. It was so good to have them here. Dr. Smith was always a lot more than just a professor to me at BYUH. I viewed him as a father figure while I was out there, over 2,500 miles away from my home in California. Noelle, the kids and I look forward to our next visit. This picture was taken on Wednesday night.

I worked every day this week, but every day I struggled with low energy. I'm finding that I get light-headed and have trouble focusing. In the past, any time I've gotten light-headed, it's been due to getting up too fast or something like that. I've always been able to "clear it" by sitting down and starting over. Now, I can't "clear it." It comes and it stays, every time I move around, or sometimes when I'm just sitting there. It's like all of the activity that typically goes on in my brain kinda gets washed out. I get this "hollow" sensation in my head and feel like there's no connection between what I'm thinking and what I'm doing. I think I finally understand how blondes feel. =0) Sorry to all my blonde friends. I couldn't resist. So, that issue has made it difficult to be as productive at work as I would like to be, but I have been able to get some things done and make some headway on some accounts I've been working on.

While the hair loss hasn't come, there are some other side effects of the chemo that have come over the past week or so. The most frustrating one is that I've begun to lose my sense of taste. Not completely, but enough that certain foods don't taste “right.” For example, acidic foods like oranges, strawberries and pineapple don't taste good, and they hurt my tongue as well. Bitter things are more bitter than ever. Unfortunately, THAT means that I don't enjoy my beloved dark chocolate any more. I don't get bitter-sweet...just bitter. Chocolate in general isn't as good. My tongue is less sensitive to spices and seasonings like onion and garlic. Gratefully, sweet things are still sweet and carbohydrates and mildly salted things still taste good. Those who know me well know how much I love good, flavorful foods, and can understand how incredibly depressing this loss of taste is to me. Some of my favorites are no longer favorites. Bummer.

Wednesday evening, the Webelos den showed up on our doorstep unexpectedly. They brought us three big boxes of food for Thanksgiving dinner, along with a gift card so we can get a turkey. I wasn't quite home when they got there, but Noelle told me that the boys were all grinning from ear to ear. The leaders told Noelle that it was the boys' idea to do this for our family. Michael just left the Webelos den a week before when he turned 11, and Noelle and I were so overwhelmed with their thoughtfulness. She said she could see in their eyes and in their smiles how good they felt to be able to do that for us. The medical bills from my two hospital stays, the chemotherapy and all my other tests haven't started coming in yet, but knowing that they soon will makes gestures like this all the more meaningful.

We continue to be blessed by the thoughtfulness of others. Just this morning, a member of our Bishopric came over with his son to shovel our driveway, walkway and sidewalk. No advance notice. No “do you need help with that?” Just a desire to serve and take matters into their own hands. Something I've become known for saying lately is, “And the hits keep coming.” There are far too many ways in which friends, neighbors and family members reach out to us in service and love to enumerate. I wonder sometimes if anyone who helps us knows just how much their kindness means. I pray every morning and night that they will be blessed for their love and service to at least the same degree that we have been blessed by it.

The Sacrament Was Never So Important to Me

Well, it's been six days, so I figured I should blog a little. Thankfully, the last six days have been largely uneventful, from a medical standpoint. I'm down to the last eight days of my first chemo cycle, and I'm feeling really well. My energy levels are up, and my PICC line is doing well. I'm on my fourth consecutive day back to work, and getting some things going again on that front.

One of the highlights of the past several days came yesterday, when I was home from church. I have to do my best to stay away from all of the people there, due to the incredible amount of bacteria and viruses being breathed out by everyone around me. But with staying home from church, I lose the opportunity to partake of the Sacrament - the bread and water blessed and passed to the members of the congregation each Sunday. It's the most important part of my Sundays, as I am able to renew the covenants I've made with my Father in Heaven, and re-commit to working each day to become the husband, father and man He would have me become. The words to the Sacramental prayers are as follows:

Blessing on the Bread:
O God, the Eternal Father, we ask thee in the name of thy Son, Jesus Christ, to bless and sanctify this bread to the souls of all those who partake of it, that they may eat in remembrance of the body of thy Son, and witness unto thee, O God, the Eternal Father, that they are willing to take upon them the name of thy Son, and always remember him and keep his commandments which he has given them; that they may always have his Spirit to be with them. Amen.

Blessing on the Water:
O God, the Eternal Father, we ask thee in the name of thy Son, Jesus Christ, to bless and sanctify this wine to the souls of all those who drink of it, that they may do it in remembrance of the blood of thy Son, which was shed for them; that they may witness unto thee, O God, the Eternal Father, that they do always remember him, that they may have his Spirit to be with them. Amen.

What a great blessing! As I renew my covenants to take upon myself Christ's name (or live as he would live; do as he would do), always remember him and keep his commandments, I am promised the blessing of having the constant companionship of the Holy Ghost, a member of the Godhead. He is the one Christ called "the Comforter," he "whom the Father [would] send in [Christ's] name, [who's mission is to] teach you all things, and bring all things to your remembrance, whatsoever I have said unto you" (John 14:26).

So yesterday, after Sacrament Meeting was over, Noelle sent me a text message, telling me that some priesthood holders would come across the street to administer the Sacrament to me, as I couldn't be there to partake with the congregation. It was an immensely special occasion to me, as I was able to focus on the very intimate and personal nature of these covenants and contemplate the love my Father in Heaven and my Savior have for me personally. I wept openly and was so grateful for the opportunity to renew the covenants I made 32 years ago when I was baptized, the covenants I have made in receiving priesthood authority, and the covenants I have made in the temple. My Savior Jesus Christ and my Heavenly Father have supported and sustained me through my entire life, and I feel their love for me even more now as I lean on them and the angels in human form they send my and my family's way to comfort, lift and support us.

By the way, my hair (for now) is still holding strong. I actually check it every day by tugging on it a few times, but nothing seems to be falling out. No guarantees that it will stay that way, of course, but with the cold weather coming, I'm grateful to think that there's a chance I'll be able to keep it.

I'm looking forward to continuing this journey and ensuring that the progress that's been made with my treatments continues. My cell counts are coming down precipitously and I hope to be ready for a bone marrow transplant by February or so. We'll see...

A Few Good Days, LDS Hospital Stay #2, a Baptism, Blown Veins and a PICC

Alright, so it's been over a week since my last post. Here goes...

Last Monday, the 22nd, I stayed at home and rested after 5 1/2 days in the hospital. I went to work from 10:00 to 5:00 on Tuesday, and from 8:00 to 1:15 on Wednesday. Overall, I was feeling pretty good those days, with the exception of some aches and pains in my joints and muscles, predominantly my hips and back. Wednesday afternoon, I went in to have a check-up, receive my third dose of Velcade and my second of Cytoxan (both chemo drugs), and check my blood and electrolyte levels. All was looking pretty good. And then...

Wednesday night, I went to bed feeling really fatigued. I woke up around 1:15 feeling nauseous. After sitting and kneeling by the porcelain throne for about 15 minutes, my time was at hand. Everything I had consumed since dinner (at least) came up and out. Aside from the foul taste in my mouth, I actually felt a little better after I was done, contrary to my norm. I usually feel more nauseous as a product of the process, the "taste" and the effects of the violent heaving my body goes through. Noelle says she always feels better. For the first time in my life, I almost understood. We took my temperature, and found I was at about 100 degrees - just below the 100.4 which is the trigger for a phone call to the BMT staff. I took an anti-nausea pill and went back to bed. My nausea subsided a little through the duration of the night, but my sleep was fitful at best, and I continued to hang out about 100 degrees. Then I woke up at 5:45, went to the bathroom, and realized I was feeling better overall. I decided to check my temperature...102.2! I was bummed. So, so bummed. Noelle called the BMT Triage Nurse line and they asked to have me come in immediately. Well, 6:00 a.m. isn't particularly the easiest time for Noelle and I to just hop in the car and run down to the hospital, so we called Jeff, who got ready for work (very early) and took me in.

By the time I got in to the hospital on Thursday morning, it was 7:00 and they were opening the clinic. They brought me in and Jeff left. They began by checking my vitals, and what do you know? My temperature was a whopping 97.8 degrees. Yeah, I know. I was thinking, "If only I had waited an hour and checked my temperature again, I could have avoided this visit. I'm fine now." Uh...wrong. I believe the spike in my fever at the time it came was a tender mercy of my Heavenly Father to get me into the hospital. After a couple hours of tests, which were inconclusive as to what was causing my fever in the first place, Dr. Ford (my new medical best friend) suggested we have some chest x-rays done. What do you know? Pneumonia. I was admitted to the hospital and told I'd be there at least 48 hours - probably 72. I explained that my daughter had a baptism on Saturday afternoon, and they said they'd see what they could do to get me there, perhaps "on a pass." So, back to prayers and faith...

By Friday afternoon, I was being told that if I could steer clear of further fevers and my Saturday morning chest x-rays were the same as or better than Thursday's, then I could be given a full discharge before the baptism and put on antibiotics that could be easily administered at home. Now, more focused prayers and faith...

Saturday morning I felt great, was fever-free, and sure they'd let me go. My chest x-rays were done a few minutes after 8:00, and I was incredibly anxious to get the good news of my official discharge. The wait over the following hour was excruciating, but finally, mercifully, came the words I needed to hear. After my fourth and final dose of Velcade on this chemo cycle, followed by a 30-minute infusion of antibiotics at around 10 or 10:30, I would be discharged and set up with Home Health for an IV placement and home administration of an IV antibiotic and a pill-form antibiotic over the coming 7 days. Noelle and I ultimately got home a little after noon.

Shave, shower, eat something. Dressed and ready to go by 2:30 for the 3:00 baptismal service. I was moving pretty slowly after a couple days in the hospital (par for the course, I'm learning), but there was no way I'd have missed the opportunity to baptize my daughter for the world. Not only did I baptize Jenna as a member of the Church of Jesus Christ of Latter-day Saints, and bestow upon her the Gift of the Holy Ghost, I sang the song I wrote for Abby's baptism 4 1/2 years ago ("Follow Me Into the Water"), and our family sang "Teach Me to Walk in the Light" together. By the end of it all, I was very, very tired. My body hurt, and it was hard to walk or stand. The Lord helped me get through what I needed to, then I was done. As soon as the closing prayer was over, my mother drove me home so I could rest and avoid contact with well-wishers and children who could expose me to stuff I can't afford to be exposed to.

Saturday night, I watched the Giants go up 3-0 on the Detroit Tigers in a World Series almost no one expected the Giants to win, and went to bed.

Sunday, the 28th of October, was Noelle's 37th birthday. That morning, I got up and dressed in time to go to church just for Sacrament Meeting, as it was the annual Primary Program, with music and the spoken word given by the children under 12. The four younger kids did pretty well, and Michael was part of a bell choir on one song. That was pretty cool and he did really well with it. I sat there in church with my hospital-grade, filtered face mask on, as I was surrounded by a bunch of adults and children breathing who-knows-what into the air around me. Sunday afternoon, I had an appointment with a Home Health nurse at about 1:00, who would come in and place an IV in my arm that would last me until the middle of the week. Around Wednesday, it would be replaced with another one to last me through Saturday, when my last IV antibiotic was to be given. If only it had gone that way...

Tina (the nurse) came. Her first attempt failed. The vein just wouldn't take the needle. On the second site she attempted, the needle went into the vein and then blew. In other words, instead of the needle poking a neat little hole in the vein for the IV catheter to feed through, the vein wall would split open, leaving antibiotic or saline or anything else to go into the muscle and fat tissue in the arm instead of into the vein itself. No good. So, Tina got on the phone and got a second nurse scheduled to come out to try and get me going. Tami showed up around 3:30. She tried one vein; it blew. After a heated rice pack to open things up and some time to help the veins calm down (they were spasming and very unhappy), on the fourth try of the day, she finally got an IV in that looked good. She helped me get hooked up to my antibiotic around 4:30, and prepared to go. Then, before leaving, she said casually, "Tina got your vitals earlier, didn't she?" "Uh...no." "Oh. She was supposed to." She took my blood pressure, which was understandably high (go figure, after what I'd been through), and then checked my temperature. It was over 101 degrees! Ugh! That typically means we need to call the triage nurse and possibly have to go back to the hospital. I was so, so angry. I saw myself going BACK to the hospital for the third time in two weeks, and only a day after leaving. If the IV hadn't been in my right wrist, I would have thrown something (I throw like a pansy with my left hand). I went out to the living room to try to calm myself down. All I could think was, 'I'm ruining Noelle's birthday.' Noelle and I decided that it was possible I had simply gotten so worked up and my body had gotten so taxed by all the poking and prodding in my already bruised and sensitive arms, that my fever had shot up because of it. We decided to wait a couple hours and see what happened. Later that evening, Noelle got on the phone with Steve, the PA working at BMT. He told her that because I was already on a couple different antibiotics, and wasn't experiencing any chills or any other "sick" symptoms, she should just watch me through the night and give him a call if those conditions changed or if the fever didn't go down by morning.

Around the time the San Francisco Giants scored what proved to be the winning run in the decisive 4th game of their World Series sweep of the Detroit Tigers, I broke into a sweat that lead to my fever breaking. I was able to sleep through the night in relative peace. Monday I didn't even consider going into work after what my body had been through the couple days before. Monday afternoon, around 4:00, I went to flush out my IV in anticipation of my next antibiotic dose, and what happened? By now, you should know the answer: the vein blew and I realized I needed a new IV...again. We called Home Health and they said Tami and another nurse (Karen) were out together that night and that they'd be by around 7:00. So, two more nurses came together to attempt to solve the problem with John's veins. Three potential IV sites later, they congratulated one another on how marvelous they were for finding a second "good" site in SEVEN attempts over two days. "This one will hold for as many days as you need it," they said. Then they flushed it and hooked me up to my antibiotic and said farewell. About 10 minutes or so later, I began to feel a burning sensation near my new IV. Would you believe it (yes, you probably would believe it by now)? The vein had...wait for it...blown. My sister in law, Rachelle, who is a nurse at Primary Children's Hospital, came over to take a look at it. After she and Noelle got on the phone with the BMT folks, they decided to have Rachelle pull the useless IV and take care of it today when I came into the clinic for a follow-up on my pneumonia. I told Rachelle and Noelle I was done trying with IVs and just wanted a PICC. They set me up to come in to the hospital a couple hours before my clinic appointment so I could get a PICC placed.

What is a PICC? It's a Peripherally Inserted Central Catheter. In my case, it enters my body into the vein that runs along the inside of my arm between the biceps and triceps, then up through my shoulder and chest, and emptying down into the vein just next to my heart, where the vein is huge, and the blood flow is so intense it will diffuse the meds going into it virtually instantaneously. The process of placing the PICC line was not terribly painful, but now that it's over, I can just say how happy I am. No more pokes, pricks or prods in my arms for quite some time. It will take some getting used to, having a couple little tubes hanging out of my inner arm. But it's a much easier way to go, compared to wondering if the next IV will take or not, and if so, for how long before it blows.

So now, I'm heading back to work tomorrow, on my second attempt to restore some semblance of normalcy since chemo began two weeks ago tomorrow. I'm so grateful for all of the prayers, fasting, love and support from family, friends, co-workers and neighbors who support me and my family through this journey. I just don't know how we'd do it without them.

LDS Hospital Stay #1

So, after 5 1/2 days at LDS Hospital, I'm home. I got home last night (Sunday) around 6 or so (I don't even remember). The days I spent at the hospital were important for a few reasons:

1. I got my first "hospitalization" of my life out of the way and gained an appreciation for what it's really like. It's funny - you watch movies and TV shows and think they're based on some degree of reality. For some people, I guess they are, but for me it was very different than what you see. My first stay helped me understand that the staff at LDSH is fantastic, and that there's nothing about being in the hospital that's naturally frightening or scary. It's just a place where good people take care of sick people. The staff members who were assigned to me were all pretty great, and they grew on me a lot. I'll be back at LDSH when I need my marrow transplant, so I'm glad I got to know the staff pretty well and get comfortable with them.
2. We began my chemotherapy. I'm on a 28-day cycle that is designed to wipe out as much of my cancer as possible over the course of a handful of cycles before the results diminish and ultimately hit a plateau. When I got in on Tuesday, 70% of my white blood cells were cancerous; as of yesterday morning, only 29% are cancerous. Over those 5 1/2 days, however, about 74% of my white blood cells - cancerous and non-cancerous - were killed. I lost a high percentage of platelettes (the thickening part of the blood that causes scabbing, clotting, and keeps a person from bleeding uncontrollably) and red blood cells (which carry oxygen through the body), as well. So, I have lower levels of energy and immunity, and feel kind of fatigued. The steroids I blogged about in my last post are only given on 12 of the 28 days in the cycle, so those are the days when I'm typically going to feel most energetic. Today is not one of those days. My side effects to the chemo have been pretty minimal to this point - actually, the only side effects I have experienced are a mildly metallic taste in my mouth - particularly noticeable when I drink water - and hiccups. Yes, hiccups. That is actually a result of the steroids and not the chemo at all. The steroids mess with a nerve that tells my diaphragm to contract for a hiccup...over and over again. On those days when I have been on the steroids, I've had as many as eight hiccup "episodes" lasting as long as 45 minutes. With a broken 5th left rib, that's not a very comfortable thing to deal with. They do, however, have a pill for hiccups. It's called Baclofen. I also expect to lose my hair in another couple weeks.
3. We learned through daily blood tests that I have a deficiency in phosphorous, a key electrolyte. While I was there, they were able to add a Sodium Phosphate "rider" (or boost) to my IV drip. Now that I'm out of the hospital, I have to take this phosphorous powder and mix it into orange juice or something every day to ensure I don't drop to dangerously low levels. 

Here are some pictures of me from when I was able to get outside for a walk with Noelle a couple times:

Hopefully, it will be several months before I'm back at LDS Hospital for a transplant. As nice as everyone was, there's really no place I'd rather be than home.

A New Diagnosis - A New Reality

On Monday morning, Noelle and I went in to start chemotherapy for my Chronic Lymphocytic Leukemia. The only problem is...that's not what I have. With the CT scan, bone scan, and bone marrow biopsy last week, the diagnosis has changed. My diagnosis has been changed to an advanced form of Multiple Myeloma which has turned into Plasma Cell Leukemia, or PCL. PCL is a very, very rare form of Myeloma which seems to occur in only 1-2% of Myeloma patients. Gee, aren't I the special one. It's a very aggressive cancer, so the treatment has to be aggressive, as well. A different diagnosis means a different treatment regimen. Instead of getting my first dose of chemo on Monday, I was given a 20-minute IV infusion of a drug called Zometa. It's a bone strengthener, meant to counteract the fact that my bones are being made more brittle, and hollowed out by the Myeloma (which explains the three broken ribs in the past two months). After that infusion, Noelle and I were sent home and told that we'd be getting more information later in the day, after Dr. Rick got the remainder of the results from Friday's bone marrow biopsy and could determine the best treatment option for my case.

Monday afternoon, I was called by Dr. Rick and told that he would be transferring my care to the Cancer Center at LDS Hospital, where I would begin my chemo on an inpatient basis. He said I should receive a call from LDSH on Tuesday morning to schedule me for a consult and possible admittance that day, "so bring a toothbrush to the consult." Now my head was swimming. Just how advanced and/or aggressive is my cancer? How long will I have to be in the hospital? How will Noelle and the kids do with all of this? How will I work and earn a living to support my family? If I miss a ton of work, how will I keep my insurance? How will I pay the medical bills, which will surely be in the thousands of dollars, or, more likely, tens of thousands (or more), when we're already living paycheck to paycheck? After a while, I was able to calm myself down and focus on the most important thing for Monday...Jenna's 8th birthday. We enjoyed our evening together as a family, but we did explain to the kids that I'd probably be going into the hospital on Tuesday, and it might be for a while.

Monday night and Tuesday morning, I was feeling the primary side-effect of the Zometa - bone and joint pain. I couldn't sleep at all. I woke up at least a dozen times between 11 pm and about 6:45 am, when I got up. Actually, saying that I "got up" at 6:45 isn't completely accurate. I got out of bed and then promptly sat down next to the bed in the recliner we got a couple weeks ago for just this type of situation. I was not only exhausted from a long, fitful night in bed, the bones in my body felt like I had been run over by a tractor in my sleep. I wanted to give each of my children a priesthood blessing before they went to school (and I to the hospital for who-knows-how-long), so I had Abby come in to my room and sit on the floor in front of me, as I couldn't stand without a lot of pain. I gave her a blessing of comfort and counsel which seemed to flow straight through me from Heaven. I was too weak to bless the other children. Noelle asked me if I would like a priesthood blessing as well. I agreed it was a good idea. Within 15 minutes or so, Matt Moore and George Throckmorten were at my side. I was anointed with oil and given a blessing that my pains would subside. I was also blessed with the ability to respond well to the cancer treatments that would be prescribed for me. I was blessed with a few other things that I won't mention here. As soon as the blessing was over, I stood up with no substantial pain. Some of my bones and joints were still tender, but about 80% of the pain was gone...immediately! I was able to get a SlimFast shake down and give priesthood blessings to my younger four before they left for school.

A little after 8:30 yesterday morning, I received a phone call. Condensed version: "John, this is Rachael at LDS Hospital. We'd like you to come in for admittance this morning around 10:00. Bring comfortable clothes. Today's going to be a long day." "How long do you expect me to be there, Rachael?" "We figure it'll be about 4 weeks." Shower, dress, pack, Holy Cow! I didn't even have time to freak out about it with only an hour to get ready. Before leaving the house, I gave Noelle a priesthood blessing as well. I think that constitutes the first time in the history of the Philpott Family that all seven of us have received blessings on the same day, let alone, within less than 3 hours of each other. We all needed them, though.

After checking in on the 8th floor at LDSH (Room E-848), things started moving pretty fast: MRI of my head/skull, chest x-ray, blood tests (about 15 vials on the first round), an IV pick, pills, finally getting to eat some very forgettable food, another IV pick (yes two available to the staff here), more blood tests, more pills, etc, etc, etc. Oh! I nearly forgot: Noelle and I met Rachael (who is my care coordinator), a doctor from my team, three social workers, a few nurses, nurses' assistants, phlebotomists, and...I can't even remember everyone. Coming off of what had already been a very long night, the day seemed like two or three. At one point yesterday Dr. Hoda told me he figured he'd only need me to stay here for a few days. That was very good news when compared to the four-week stay we had initially been told to anticipate. All in all, it was an extremely long day. Noelle was with me through the late afternoon, which was very comforting.

Today (Wednesday) was much more calm - my chemo regimen has been solidified and begun. I'm on a 3-ingredient "chemo cocktail," though none of the ingredients are the same as what had been previously prescribed when we thought this was CLL. I'm feeling fine - no major side-effects other than elevated blood sugar levels and occasionally tingly lips from the steroids I'm on (move over, Schwarzenegger). Other side-effects will come with time: nausea, hair loss, etc.

I'm blessed to know how well Noelle and the kids - and I - have been taken care of through all of this. I'll have to talk more about that in my next entry. Right now, it's past midnight on Wednesday night / Thursday morning and I am tired. I'm going to bed.

Chemotherapy, Here I Come!

I weighed myself this morning, and because I'm not a girl, I'm going to share my weight. I weighed in at 217.2 pounds. We'll see how that changes over the next six months...

We're off to my first day of chemo. I just want this darned process to get started. Here we go...

Now I know what a '10' is like...

So, on Friday, I went in for a bone marrow biopsy. I had been given a prescription for Lorazepam, which Dr. Rick called "happy pills," to make me loopy and relaxed so I wouldn't feel much pain. So, Noelle and I got there at 9:30 for the procedure, I having already taken the first Lorazepam pill at 9:00, per doctor's orders. At around 9:40, I was taken back to have my blood drawn. As they were taking 5 viles of blood from me, they asked if I'd taken either or both Lorazepam pills. I told them I had taken one at 9:00. I was told, "Oh...it typically takes about 45 minutes for them to start taking effect, and that's about when you want to take your second one." So after drawing my blood, they had me take the second pill, then they ushered me back to Room 11 to wait for the doctor who would perform the procedure.

I waited for a while, but he finally came and asked me how I was feeling, and I told him "fine." He paused and said, "OK, well, let's get under way." I lied down on my front side on the table and pulled my pants down just a couple of inches to expose the area to which he needed access. Now... someone had told Noelle and I that the shot to inject lidocaine to numb me up would be the worst part of the procedure. I have one thing to say to them... LIAR!!! The shots were no problem at all. I figured, "wow... if that's the worst part, this shouldn't be bad at all." Well, the shots weren't the worst part.

The next thing I know is I feel some pressure - obviously the needle going through the skin, fat, muscle, etc, on it's way down to the top-rear of the pelvic bone - no pain, though. And then... WHAM-MO!!! The needle goes through the bone! Yikes. "Phew! I'm glad that's over," I think. Then the doctor says, "Now, you're going to feel some discomfort as I remove some marrow." TRANSLATION: "You're going to wish we had made you a lot more numb." I felt like crying and immediately began to sweat profusely as the first bit of marrow was extracted. I literally felt it being sucked through the bone from the lower-outside portion up to the top. It was only as he was about done that I became aware that I had been uttering a prolonged groan from deep, deep within my body through the whole thing. Then the doctor has the nerve to say something like, "We're almost done. You're doing great." I think that's when I told him and the nurse that I was feeling like I was about to puke all over the wall I was facing. That's how "great" I was. They put some kind of puke bucket next to me and I held it next to the table for the duration of the procedure.

Next, the doctor said, "Now I'm just going to get a little bit of the bone to add to the biopsy. You will feel some pressure." TRANSLATION: "You're going to wish we had knocked you out completely in a second." Then, I feel this awful KA-CHUNK! Though I'm sure it was a very specialized surgical instrument, it felt as though chisel and mallet were at work. KA-CHUNK! KA-CHUNK! KA-CHUNK! KA-CHUNK! At least five times, maybe six, before the sadist had finished his work. "Alright, we're done," he said casually.

I've passed out twice in my life - once, when I was incredibly stressed at work; the other, when I was malnourished, dehydrated and performing on stage in China. I was sure this would be my third time, but somehow, I stayed alert throughout, much to my chagrin. After bandaging me up and turning me over on my back to add some pressure to the wound and help the bleeding stop, the nurse asked me if I'd like them to bring in my wife. I said yes, and they went to get her. When she came in and saw me sweating and with a cool cloth over my head, I knew I looked bad. She tried to sound calm, but I could see it in her face. I looked about how I felt. She then told me that while I was going through all this, she was getting a 15-minute seated massage in the lobby. Nice.

Anyway, when I finally lost my nausea I got my own massage and we went home. I'm so glad it's over.  Those darned "happy pills" didn't bring me much happiness, that's for sure. They say a man can never tell a doctor he's at a '10' when asked to rate the level of their pain on a 1 to 10 scale. I'm convinced that I now know what a '10' feels like. If it turns out that I need to receive a bone marrow transplant, I will ask to be knocked out completely, as there's no way I want to go through that pain again.

Chemo Class. Chemo Cocktail. Chemohawk???

Today Noelle and I went to a Chemotherapy Class, where we learned a lot. We discussed some things I had already considered, like side effects and their timing relative to treatments, and some that I hadn't considered, like diet, exercise, and the fact that different chemotherapy medicines are put together for a patient's treatment, like fruit cocktail. 

So, on that last point, here's my Chemo Cocktail recipe. It's called the FCR recipe:

• Fludara (Fludarabine) - disrupts the growth of cancer cells (and some normal cells)
• Cytoxan (Cyclophosphamide) - disrupts the growth of cancer cells (and some normal cells), which are then destroyed.
• Rituxan (Rituximab) - attaches to certain cancerous white blood cells (and some normal cells), then brings other immune cells to help kill the cancer cells.
• A few other meds: one to fight nausea, one help the anti-nausea medicine to work better, and a third to prevent or decrease allergic response.

This FCR Chemo Cocktail will likely include many of the following side effects in varying degrees:

• Nasal and sinus congestion during infusion
• Chills
• Fever
• Allergic reactions
• Decreased white blood cell count with increased risk of infection
• Decreased platelet count with increased risk of bleeding
• Hair loss
• Nausea
• Vomiting
• Loss of appetite
• Fatigue
• Headache
• Diarrhea
• Constipation
• Difficulty sleeping
• Moodiness / Irritability
• Mouth sores

Not bad, right? =0)

My kids all wanted to know when I'd begin to lose my hair so they can shave my head. I was told that my FCR Cocktail should produce the first hair loss by day 14, with all of it gone by day 21. So sometime before Halloween, my hair should be gone. So, I may or may not have any hair on my head for Jenna's baptism on the 27th of this month. We'll just have to wait and see. One of my old mission companions suggested that I wear a mohawk and call it a "chemohawk," as did one of his friends. Unfortunately for me, if the chemo takes any of my hair, it will take it all. Perhaps my kids will want to go to that point in shaving my head and take some pictures before shaving it all. Stay tuned for pictures to be posted before the end of the month.

Moving forward, my diet needs to be high protein (limiting beef and pork), low fat and low carb. I need to eat 5 or 6 small meals each day with high-protein snacks in between, as chemo causes an increase in stomach acid. Keeping food in the gut (even when I don't want to eat at all) reduces the chance of acid reflux and heartburn. I need to exercise for about 30 minutes a day, even if it's just walking around the house on the days I'm feeling the worst.

Everyone in my home needs to get a flu shot, sooner than later, because my catching the flu can be dangerous as my immune system will be severely weakened against viruses. If anyone in my house gets a fever, I need to wear a face mask around them. 

Now, lest you think that it's all doom-and-gloom, there are some fun things we learned about some free services that are offered to us. For example, once a month, Noelle and/or I can come in and get a free therapeutic seated massage. There are support groups for me (the patient), for Noelle (the caregiver), and for the kids in different age groups. Meditation, yoga, even housekeeping services are also available. The one I'm actually most excited about is the men's cancer support group. Aside from having monthly meetings to discuss a variety of topics, every fall and spring, they receive a fly fishing trip...FREE! Are you kidding me?!? I've heard before that fly fishing is incredibly relaxing, and have thought several times that I'd like to try it, but this was totally unexpected. The trips are in September and March, complete with a river guide, all the equipment and gear we would need, food and accommodations. And did I mention that it's free? Pretty cool, I must say.

Anyway, I'm very glad we went, and I learned so much. While I'm not thrilled about all of the side effects the chemotherapy may produce, I'm comfortable going through them in order to save my life and extend my time on this earth with my family.

Radioactive Lemonade vs. Barley Green

So, today I had a CT scan and a bone scan to determine if the cancer has spread to any of my bones or vital organs. It was a very interesting process. I entered the doctor's office under orders to have not eaten for four hours - water only. I checked in and was told to go upstairs to the Nuclear Medicine department. They put a flexible IV catheter kink of tube into my left arm (they were thrilled that my veins are about the size of Interstate 80), then shot some kind of radioactive liquid into my arm at noon. Over the following 3 hours, the chemical would gradually seep into my bone tissue so it would scan better. Then I went back downstairs to drink my "radioactive lemonade." With all this radio-active stuff coursing through my veins, I was sure I'd be able to pick up radio stations in Europe when I was done just by twisting my ear or pushing my belly button or something.

So, I get downstairs and they give me a large bottle of yellow liquid that looks like lemon gatorade in color - a very, very unnatural yellow. The ladies upstairs who put my IV in told me it was "awful" and that it tasted "like sludge with crystal light powder mixed in." I might have feared the taste more if my parents hadn't made me try Barley Green (just think liquified barley, spinach, leeks and seaweed with a touch of manure for flavor) when I was a teen. I figured there was NO WAY this stuff could possibly be worse than that. Guess what? I was right. Barley Green is far worse...by a landslide. My radioactive lemon cocktail wasn't that bad at all. It had a somewhat bitter after-taste, but other than that, it was no problem chugging down 8 oz. every 20 minutes for an hour and 20 minutes. Granted, I had to use the boy's room before my scan - and after - but no big deal. The CT scan was fine. Not very different from my MRI, other than the CT scanner is a lot quieter and I had to hold my breath for about 10 to 15 seconds a few times. A small price to pay for the information it will provide.

I was then allowed to go find something to eat, as it was only about 2:00, and I didn't have to be fasting for the bone scan at 3:00. I went down to the cafeteria and had a rather yummy double cheeseburger and fries and read a book. It was a nice break for a little while.

The bone scan was pretty cool, because I got to see the images as they were being taken. They took images of my pelvic bones, then my chest and skull, then they did a head-to-toe scan in six sections. It was actually very cool, because I could see bright spots on the image where I had broken ribs recently. My left shoulder was a little brighter as well, showing the stress it's been under as it's been healing from the injury 4 weeks ago. Anyway, they weren't giving any diagnoses then and there, but were happy to explain what the spots on my ribs meant. It was very intriguing, actually. I'm sure I'll hear by Monday when I'm in for Chemotherapy if there's anything from either of these two scans to be concerned about.

A funny thing happened when I was getting ready to leave. One of the lady's there was telling me I was done and that Dr. Rick would have the results sent to him in short order. I asked if I could see them too. She got this funny little smile on her face and said, "Well...if you call the front dest and tell them that you need your images from both scans put onto a CD...for your doctor...then they'll make one for you that you can pick up...for your doctor. They won't charge you anything for it...because it's for your doctor." So, I think I'll be picking a CD of the images from both scans tomorrow...for my doctor, if the originals he's sent somehow aren't enough. =0)

Isaiah has been in quite a mood lately. He's throwing a fit every five minutes, it seems, and now he says he's doing it because he's "worried about the cancer." Do I believe him? Well, maybe a little, but it's not the only reason. He's been acting like this for a few weeks now, and now I think he has his scape goat. The kids are all still trying to work this all out in their minds and hearts right now on their own levels.

Nothing else to report now, apart from the consistent support that continues to come in via email, Facebook, phone calls, etc. I appreciate them all. Tomorrow, Noelle and I have our Chemotherapy Class, to tell us what to expect and how soon I'll be needing to shave my head. =0)

Love, Prayers, Meals and a Half Marathon

While there's really nothing new to report, I wanted to summarize some of the incredible responses I've received to the spreading of the news.

Late Friday night, I posted a "Life Event" about my diagnosis on Facebook. Very quickly, comments and words of encouragement and support began flooding in. Some representative comments include:

• Prayers and hugs for you and your family.
• John, you're stronger than you know and this will only prove it to yourself and make others wonder where you get your strength. Let it be your testimony. Love to you and yours.
• Knowing you, with your positive energy you'll beat this thing in no time! Sending you love and good energy.
• I love you sooo much! If love alone could heal, you would be well tomorrow.
• Our hearts, love, and support are with you and your family John!!! We have included you and your family in our prayers and want to know we are here to help out in ANY way, shape or form! (That's what GREAT neighbors are for right?) We are right next door and are willing to help with anything at a moments notice. If you need help with kids, meals, housework, yardwork, let us help! I know Noelle is one AMAZING Super Mom, but just know we want to help out in ANY way, if we can help lighten the load. What a GREAT weekend for general conference to fall on! I'm sure you will find peace and comfort in the messages shared. You and your family are such examples of FAITH....I have felt that as we have come to know your family and your testimonies you have shared. Sending love and support your way!
• The prayers of me, my family, and I'm sure all of the Santa Rosa 1st ward (or whatever it's called now) are with you. Stay strong!!!
• You've got this buddy, you can beat it!!!!!!

There are lots of well-wishers and supporters. Thursday, Friday and today, meals were provided for my family so we wouldn't have to worry about it. My name has been added to prayer rolls at LDS temples and among members of the Navajo Nation. Word is spreading among current and former friends, neighbors and ward members.

One of the sweetest expressions of support and love has come from Amy Myatt, a dear friend and the younger sister of my best childhood friend. Her initial comments late Friday night warmed my heart:

• I love you like you were my brother. Lots & lots of love & prayers coming your way. I'll have my kids pray for you too. Give my love to Noelle too.

Then, yesterday afternoon, she posted something as her own Facebook status that was so thoughtful and sensitive:

• Some people who are our friends for a long time cross over to feel more like family than friends. My brother has a group of best friends that he has been friends with since they were kids... these 4 guys all feel like extended family, like big brothers to me. Last night I found out that one of them was diagnosed with Chronic Lymphocytic Leukemia. Please add him to any prayer lists you know of, pray for him yourself, send him positive & healing thoughts. Please keep his wife & 5 beautiful children in your prayers as well. Whatever you got, whatever you do in these circumstances, please do it. He is a great guy, a strong man & I just know he can beat this!

I couldn't even finish reading the post in one shot because of the tears of gratitude. Thank you, Amy. Her post spawned several well-wishes from among her friends who don't even know me. In fact, this morning, Amy forwarded to me another sweet message one of her friends sent to her last night:

• Just wanted to dash off a note to let you know I'll think of your friend John tomorrow while I run my first-ever half marathon. It's a Lymphoma & Leukemia fundraising event. He can be my inspiration when I start to feel a bit tired! I'm sorry for him and for his family that they have to face this ugly trial and I wish him the best!  xoxo, Hayden

I am truly blessed to have so many wonderful friends.

The semi-annual General Conference of the Church of Jesus Christ of Latter-day Saints was held yesterday and today. Abigail had a once in a lifetime opportunity to sing in a youth choir at the Saturday afternoon session. That was wonderful. Also, many of the talks seemed to be spoken directly to me and added some comfort and perspective to what I have already received through the Holy Ghost. I feel a deep sense of peace as I begin this journey...this fight. All is well.

Feeling Good

Today has been a pretty good day. Work was typical. After returning home, we sat down for dinner, then after completing "Peaches and Pits" (our daily discussion of each of our highs (peaches) and lows (pits) for the day), Noelle and I told the kids what's going on. We were both impressed with their initial reactions. Lots of questions. Lots of concerns. Lots of opportunity for Noelle and I to reassure them that the reason we're going to fight this cancer is because there's a good chance we'll win the war against it. We told them some of the things they can expect, i.e. Dad's going to get more sick before he gets better, Dad's hair is probably going to start to fall out, etc. Actually, we told the kids that as soon as my hair starts to fall out, the boys can shave my head, as they're the ones who have to put up with me cutting their hair. Michael wants to shave a smiley face into the back of my hair, and I think Isaiah wants to give me a mohawk. I'll post some pictures when that day comes. Overall, though, the kids took the news pretty well.

I had a great phone conversation with Mike Myatt tonight after putting Abby to bed. Over the past several years, he and Frances have become very active in their church, which is so good to see. They and their boys really seem to enjoy it all. Mike and I were able to see eye to eye and talk a bit about how I feel that (without our knowledge) God has been preparing me, Noelle and our kids to be able to handle this trial. I don't suggest that it won't be difficult. I only suggest that it is something that we will be able to get through. Anyway, it was so good to talk about this with the man who has been there for me through so many things in life, to feel his incredible love and support, and to know that he'll be praying for my recovery just as much as my own family will be. He's even going to be adding my name to the "prayer chain" at his church. Time may pass, and distance and life's busy-ness may separate us, but true friendship never dies. I love Mike as fiercely as a brother. I'm honored to call him my friend and to have that feeling reciprocated. He is a "salt-of-the-earth" kind of guy, a devoted son, brother, husband, father, uncle and friend. Thanks for everything, Mike, over 3 decades...and counting. =0)

Tonight I'm feeling a tremendous amount of gratitude...
   ...gratitude for parents, teachers, leaders, a wife, children, friends, a Father in Heaven, and a Savior who have all worked hard to teach and show me what life is all about.
   ...gratitude that I'm not falling apart emotionally, psychologically and/or spiritually at the news of my disease, as many do.
   ...gratitude that I've been tremendously blessed with great health throughout the course of my first 40 years of mortality.
   ...gratitude for the love and support of those closest to me who will sustain me when I need it (and probably won't want it because I'm stubborn like that).
   ...gratitude for the gift of music, which has absolutely lifted and encouraged me over the past week and communicated to my spirit things that can't be put into words.
   ...gratitude for an amazing woman who has stood (and will continue to stand) by my side through every trial and affliction that comes our way. I know that not all husbands and wives are so fortunate and my heart aches for them.
   ...gratitude for my Savior, Jesus Christ, who suffered both in the Garden of Gethsemane and again on the cross for my sins and my afflictions. I've reflected several times over the past week and a half on the following words from the Book of Mormon:

    "And he shall go forth, suffering pains and afflictions and temptations of every kind; and this that the word might be fulfilled which saith he will take upon him the pains and the sicknesses of his people.
   "And he will take upon him death, that he may loose the bands of death which bind his people; and he will take upon him their infirmities, that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh how to succor his people according to their infirmities."
                          - Alma 7:11-12

In addition to suffering anguish of body and spirit for the sins that I commit, so that I may be forgiven as I repent and continue in my efforts to accept his invitation to follow him, he also suffered for my pains, sicknesses and infirmities so he who was without sin can know perfectly how to succor me in my hour of need. All he asks of me is to seek him, and he'll be there for me. The Savior has given us the following promises:

   "Draw near unto me and I will draw near unto you; seek me diligently and ye shall find me; ask, and ye shall receive; knock, and it shall be opened unto you."
                          - Doctrine and Covenants 88:63

I trust those promises with all my heart.