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...