It's only been a few days, but I wanted to post an update on how things are going with my GVHD. It seems to be going away, or at least subsiding quite a bit. My appointment at the BMT clinic went well. I was given a new prescription for that cream I talked about in my last post...only this time it was for a 1-pound vat of the stuff. My skin is nowhere near as rashy or dry as it was, and I don't itch quite as regularly. Then again, I was itching 24/7, so any improvement in that regard is a good one. I'm hoping that with the continued use of the cream it'll go away completely so I don't have to bump up my Cyclosporine again or go back on steroids. That would be a huge bummer because it would delay further my re-entry into society...able to work, able to attend church, able to go to public places without my mask, etc.
Good news...My friend Rebecca is finally out of the hospital. She had a really rough go of things following her second transplant which was necessitated by her relapse. I discussed her relapse in a post on February 15th called "When Science Isn't Enough." When I went into the clinic on Friday, she and her mom were there in the infusion room while Rebecca was getting a dose of Vidaza. She looks tired and worn down still, but so much better than she looked a week and a half before when we stopped by to see her as an inpatient at my previous clinic visit. It did my heart good to know that she was out of the hospital and able to sleep in her own bed...and not be hooked up to a pole constantly. That, my friends is one of the most frustrating things about being an inpatient. You've got to take that blasted pole with you everywhere you go...on your walks around the unit, to the bathroom, to the shower. Ugh. Anyway, I'm thrilled that she's out of the hospital. Recovery goes so much faster out of the hospital than in.
I get to see Mike Myatt (the kingpin of "the guys") this afternoon and Friday evening, as he's traveling through Salt Lake City between Sacramento and Boston. He has some business stuff going on in Boston this week and was able to get flights that had layovers here in SLC. It's always good to see him.
That's it for now. One of my shortest posts ever is in the books...
Monday, April 28, 2014
Wednesday, April 23, 2014
GVHD and Some Candor About Loss, Grief and Therapy
Well, it's here...again. I've got Graft vs. Host Disease. So fun. Actually, compared to how it was just after my transplant last spring, this really isn't that awful. My allogeneic (donor) transplant was on May 29th last year. While recovering in the hospital over the next couple weeks, I got some GVHD throughout my GI tract...mouth and throat sores that made it very hard to eat and swallow and necessitated a pain pump, and issues with my gut and bowels I won't describe in any detail. =0)
Now I've got GVH of the skin. My donor's cells are viewing my skin system as something foreign - remember that no one told my donor's cells they were "moving" - so they're attacking it. I have bumpy, rashy skin all over my body...well...not really all over. The soles of my feet, the palms of my hands, my...um..."stuff," and the majority of my face have been spared...to this point, at least. There are a couple splotches that look like dry, raised little lesions on my legs, the back of my left hand, and one on my bum by my waist. Around my eyebrows, eyelids and around my hairline, the skin is dry and flaky.
At my clinic visit last week Tuesday, the GVH wasn't quite as bad as it is now. A cream-based medicine was prescribed for me, but I'm just about out and my insurance won't allow a refill until the end of this week. Ugh. I can't put the cream on my face, so I just have to live with it there, I guess. There's a pill I can take for the GVH, but my doctor wanted to just stick with the cream and bump up my Cyclosporine (immuno-suppressant) and see if the symptoms subsided. Bummer. Now, there's the possibility that I'll have to go back on steroids...my favorite. Remember how grotesquely swollen my head and body got last summer and fall? Yeah, that was the steroids' wonderful work. I'm really NOT excited about that prospect. That'll just delay my ability to re-enter society as a whole even longer. Once you're on steroids, you have to taper them gradually. The tapering process feels like it takes forever, and the steroids also sap my energy. I really hope they can find another way to manage this GVH. I've scheduled a clinic visit for Friday to reevaluate my GVH and determine what we're going to do.
The GVH really doesn't hamper my daily activities...it just makes me itch a lot right now. It can get a lot worse, as I understand. The skin can thicken and get really tight and inflexible. At every clinic visit since my transplant, I've been asked to put my hands palm-to-palm in front of my chest with my fingers pointing up like I'm praying. They always look at how flexed my wrists can go to see if I've been losing any flexibility. I hope it never gets so bad that walking, cooking, typing, showering and other activities become terribly difficult.
Hmmm... Let's see... What else has been going on?
Sarah, the therapist I've been seeing since last September for mood/temper/grief issues is moving to Connecticut with her husband and son for a job transfer for her husband. I had my last visit with her a couple weeks ago. Sarah's been so great for me. Gratefully, she's referred me to a colleague of hers named Kathy. I've had a couple visits with her now, and it looks like that will be a good fit, too. The amount of grieving I was going through last summer had begun to become oppressive and I was trying to keep it all bottled up and stay strong. I wasn't succeeding. My mood spiraled downward and my temper got a little hot. You see, there's a lot of loss you go through with leukemia and stem cell transplants and such. Let me just innumerate some of the key losses I've experienced, either for a while or on an on-going basis...
I lost my health. Though I've never been svelte and muscular - what might fit the classic definition of being "fit" - I've always enjoyed pretty solid health. Several years ago, when working five consecutive stressful weeks in Hayward, CA, one day I thought I was having a heart attack and was rushed to the Kaiser Emergency Room. After a litany of tests, the ER doc came in and said, "Mr. Philpott, we've checked everything. You're the healthiest 'sick person' I've ever seen. My prescription: some Tums and a lot less stress." Well, with the cancer came chemotherapy, which wasn't really awful for me (thankfully), but did sap my energy and strength a bit. Then came my transplants, my "three weeks of hell" last June and July, and my subsequent loss of virtually all strength, energy and semblance of health. I felt like death just barely warmed over almost all the time.
I lost the freedom to make concrete plans for the future. When you're diagnosed with cancer, plans kind of go out the window...at least for a while. The reality of that all set in and slapped me in the face right away when my test results came in, changing my working diagnosis of ALL to PCL, receiving a call from LDS Hospital to schedule me for admittance to begin my chemo, being told I'd be there for about 6 weeks starting that day, then within a couple days of admittance being told it'd only be about a week, being released then admitted again with pneumonia less than a week later and only two days before my daughter's baptism. Yikes! If that whirlwind didn't teach me to not fill my calendar with anything that wasn't related to my cancer and its treatments for a while, I don't know what would have. Everything became about "when's my next chemo appointment," or "when's my next test," or "when do I have to take more blasted pills?" With my transplants, planning anything became even more difficult. I didn't even know how long I'd be in the hospital. I haven't even mentioned long-term plans. There was a pretty consistent fear related to all of the "what-ifs" that crept in. What if I don't make it through transplant? What if the transplant doesn't work? When I was in the hospital with failing kidneys and liver and unable to communicate with anyone, I wondered, what if I'm a vegetable the rest of my life? With those kinds of negative "what-ifs" running through my brain, I had a difficult time planning to do anything or looking forward to anything that was very far down the road. Getting back to work someday, seeing my kids graduate high school and college, going on missions, getting married, having children of their own...sometimes it was nearly impossible for me to imagine actually being around for those things. I've always been a dreamer. I've always loved looking ahead to things. The excitement and anticipation have always been about as much fun as the actual thing I'm looking forward to. Having that taken away was devastating.
I lost my job. February 14, 2013 was the last day I worked my day job. I've been taught all my life that one of my primary roles is to be a provider for my family. I've always worked hard to do so, and losing the opportunity to even try was terribly frustrating. Losing my income was tough, too. We went seven months after leaving my job before my first Social Security Disability payment finally came in, and I felt like I was failing my family. I knew it wasn't my fault that the cancer had taken away my ability to fulfill my role as provider, but it's hard to look at the bills coming in every month and not feel like it's your fault you have to struggle so hard to pay them.
I lost my temper a lot more regularly. With the frustration and anger about all of the various losses I was experiencing, coupled with the steroids I was taking, my patience always seemed to run paper-thin. I found myself spending a ton of time apologizing to Noelle and the kids for losing it so often. I love my family. Anyone who knows me well knows how devoted to them I am. I just struggled with reflecting my love and devotion to them in my words and actions.
I lost my ability to do a lot of things around the house. Because my immune system is so compromised, I can't be around anything dusty or any heavy-duty cleaning agents. I can't vacuum, dust, or mow the lawn. I can't clean the bathroom. I can't cut my boys' hair. I enjoy cooking, and wanted to do it a lot for my family seeing as I was home all the time, but just didn't have the energy to be in the kitchen and on my feet all day or even for just a couple hours. It's hard to want to help with all the time you have, but be denied the opportunity, either by your doctors or your body. Which leads me to the next thing...
I lost a lot of my self-worth. It's hard to not feel kind of worthless to those around you when they spend so much time and energy serving you and doing things for you and others you feel like you should be doing, and you don't feel like you can give anything of yourself back to them. I struggled with feelings that if I weren't around, life would be a lot more pleasant for everyone I care about. I felt like I contributed nothing of value to my family, my church, my community, or my relationships with others while draining them of all of their time, talents, resources and energy. That's really hard for someone who has always needed and derived a great deal of satisfaction from a sense of belonging...being a contributing and valued member of a family, a church congregation, a group of friends, etc.
I lost my ability to go to church with my family every Sunday. Members of the Church of Jesus Christ of Latter-day Saints (aka the Mormon Church) spend at least three hours every Sunday in regular church meetings...not including choir practice or any other special meetings. Some people outside the Church suggest that's excessive, but I've always enjoyed it. There's a great deal one learns when they attend three solid hours of sharing thoughts, feelings and testimonies of Jesus Christ and His gospel with others. This weekly tradition, along with personal and family scripture study and prayer, has helped me to develop the faith that has been my foundation through the struggles of the last 19 months. The learning and development of faith is one thing. The sense of fellowship and the relationships one develops is also incredibly important. My family moved to our new home, and thereby changed our ward (or congregation), just three months before my diagnosis. That's just not enough time to really get to know many people and become immersed in the social aspect of the Church. Our ward has been wonderfully supportive through our cancer journey, but it's hard - really hard - for me to not know many of the people with whom my family attends church and to not feel connected to my "ward family."
I lost my looks. I'm not vain, but when I looked in the mirror following transplant, hairless and weighing in at a scant 170 pounds, I didn't see myself. I saw my father just before his death from cancer in 2006. When I went on steroids, and my body ballooned from 170 pounds to nearly 250 pounds in just a couple months, I didn't look much like myself, either. My skin was stretched to the limit and I have the stretch marks to prove it. It's not that I wanted to look movie-star handsome; I just wanted to look like myself.
Anyway, that's a lot to lose. During one clinic visit in late August or early September of last year, I ended up opening up to my PA about the stresses and emotional problems I was having. I finally owned up to the fact that I needed some help dealing with it all. Gratefully, I was told that this issue is very, very common among BMT patients - and I'd imagine all or most cancer patients. That helped me feel better. I was given an anti-depressant medication called Effexor (sp?), and began seeing Sarah. Change didn't dome right away, but gradually things have gotten better - much better. Do I still lose my temper? Yes, but nowhere near as often as I used to. Do I still get down sometimes, grieving for the things I've lost? Yes, but I have some tools to help me get through it now. I'm so incredibly grateful for the therapy I've been through and will continue to go through and for the patience of my wife and children as I work on me.
I guess the last thing I should mention is that I've decided to write a book. I'm still working out the kinks when it comes to the book's scope and focus. Just in making some early notes, I've realized that this thing could really get out of hand when it comes to the quantity of material/pages. I hope to keep the size down to a size that's not intimidating to anyone, but still have enough substance to be of worth to its target audience. Now...whether anyone in the target audience would ever chose to buy or read it, let alone whether or not I can even get it published, is left to be seen. I'll write more about the book as time moves on and I get further into the process.
I guess that's it for now. This post is long enough. =0)
Now I've got GVH of the skin. My donor's cells are viewing my skin system as something foreign - remember that no one told my donor's cells they were "moving" - so they're attacking it. I have bumpy, rashy skin all over my body...well...not really all over. The soles of my feet, the palms of my hands, my...um..."stuff," and the majority of my face have been spared...to this point, at least. There are a couple splotches that look like dry, raised little lesions on my legs, the back of my left hand, and one on my bum by my waist. Around my eyebrows, eyelids and around my hairline, the skin is dry and flaky.
At my clinic visit last week Tuesday, the GVH wasn't quite as bad as it is now. A cream-based medicine was prescribed for me, but I'm just about out and my insurance won't allow a refill until the end of this week. Ugh. I can't put the cream on my face, so I just have to live with it there, I guess. There's a pill I can take for the GVH, but my doctor wanted to just stick with the cream and bump up my Cyclosporine (immuno-suppressant) and see if the symptoms subsided. Bummer. Now, there's the possibility that I'll have to go back on steroids...my favorite. Remember how grotesquely swollen my head and body got last summer and fall? Yeah, that was the steroids' wonderful work. I'm really NOT excited about that prospect. That'll just delay my ability to re-enter society as a whole even longer. Once you're on steroids, you have to taper them gradually. The tapering process feels like it takes forever, and the steroids also sap my energy. I really hope they can find another way to manage this GVH. I've scheduled a clinic visit for Friday to reevaluate my GVH and determine what we're going to do.
The GVH really doesn't hamper my daily activities...it just makes me itch a lot right now. It can get a lot worse, as I understand. The skin can thicken and get really tight and inflexible. At every clinic visit since my transplant, I've been asked to put my hands palm-to-palm in front of my chest with my fingers pointing up like I'm praying. They always look at how flexed my wrists can go to see if I've been losing any flexibility. I hope it never gets so bad that walking, cooking, typing, showering and other activities become terribly difficult.
Hmmm... Let's see... What else has been going on?
Sarah, the therapist I've been seeing since last September for mood/temper/grief issues is moving to Connecticut with her husband and son for a job transfer for her husband. I had my last visit with her a couple weeks ago. Sarah's been so great for me. Gratefully, she's referred me to a colleague of hers named Kathy. I've had a couple visits with her now, and it looks like that will be a good fit, too. The amount of grieving I was going through last summer had begun to become oppressive and I was trying to keep it all bottled up and stay strong. I wasn't succeeding. My mood spiraled downward and my temper got a little hot. You see, there's a lot of loss you go through with leukemia and stem cell transplants and such. Let me just innumerate some of the key losses I've experienced, either for a while or on an on-going basis...
I lost my health. Though I've never been svelte and muscular - what might fit the classic definition of being "fit" - I've always enjoyed pretty solid health. Several years ago, when working five consecutive stressful weeks in Hayward, CA, one day I thought I was having a heart attack and was rushed to the Kaiser Emergency Room. After a litany of tests, the ER doc came in and said, "Mr. Philpott, we've checked everything. You're the healthiest 'sick person' I've ever seen. My prescription: some Tums and a lot less stress." Well, with the cancer came chemotherapy, which wasn't really awful for me (thankfully), but did sap my energy and strength a bit. Then came my transplants, my "three weeks of hell" last June and July, and my subsequent loss of virtually all strength, energy and semblance of health. I felt like death just barely warmed over almost all the time.
I lost the freedom to make concrete plans for the future. When you're diagnosed with cancer, plans kind of go out the window...at least for a while. The reality of that all set in and slapped me in the face right away when my test results came in, changing my working diagnosis of ALL to PCL, receiving a call from LDS Hospital to schedule me for admittance to begin my chemo, being told I'd be there for about 6 weeks starting that day, then within a couple days of admittance being told it'd only be about a week, being released then admitted again with pneumonia less than a week later and only two days before my daughter's baptism. Yikes! If that whirlwind didn't teach me to not fill my calendar with anything that wasn't related to my cancer and its treatments for a while, I don't know what would have. Everything became about "when's my next chemo appointment," or "when's my next test," or "when do I have to take more blasted pills?" With my transplants, planning anything became even more difficult. I didn't even know how long I'd be in the hospital. I haven't even mentioned long-term plans. There was a pretty consistent fear related to all of the "what-ifs" that crept in. What if I don't make it through transplant? What if the transplant doesn't work? When I was in the hospital with failing kidneys and liver and unable to communicate with anyone, I wondered, what if I'm a vegetable the rest of my life? With those kinds of negative "what-ifs" running through my brain, I had a difficult time planning to do anything or looking forward to anything that was very far down the road. Getting back to work someday, seeing my kids graduate high school and college, going on missions, getting married, having children of their own...sometimes it was nearly impossible for me to imagine actually being around for those things. I've always been a dreamer. I've always loved looking ahead to things. The excitement and anticipation have always been about as much fun as the actual thing I'm looking forward to. Having that taken away was devastating.
I lost my job. February 14, 2013 was the last day I worked my day job. I've been taught all my life that one of my primary roles is to be a provider for my family. I've always worked hard to do so, and losing the opportunity to even try was terribly frustrating. Losing my income was tough, too. We went seven months after leaving my job before my first Social Security Disability payment finally came in, and I felt like I was failing my family. I knew it wasn't my fault that the cancer had taken away my ability to fulfill my role as provider, but it's hard to look at the bills coming in every month and not feel like it's your fault you have to struggle so hard to pay them.
I lost my temper a lot more regularly. With the frustration and anger about all of the various losses I was experiencing, coupled with the steroids I was taking, my patience always seemed to run paper-thin. I found myself spending a ton of time apologizing to Noelle and the kids for losing it so often. I love my family. Anyone who knows me well knows how devoted to them I am. I just struggled with reflecting my love and devotion to them in my words and actions.
I lost my ability to do a lot of things around the house. Because my immune system is so compromised, I can't be around anything dusty or any heavy-duty cleaning agents. I can't vacuum, dust, or mow the lawn. I can't clean the bathroom. I can't cut my boys' hair. I enjoy cooking, and wanted to do it a lot for my family seeing as I was home all the time, but just didn't have the energy to be in the kitchen and on my feet all day or even for just a couple hours. It's hard to want to help with all the time you have, but be denied the opportunity, either by your doctors or your body. Which leads me to the next thing...
I lost a lot of my self-worth. It's hard to not feel kind of worthless to those around you when they spend so much time and energy serving you and doing things for you and others you feel like you should be doing, and you don't feel like you can give anything of yourself back to them. I struggled with feelings that if I weren't around, life would be a lot more pleasant for everyone I care about. I felt like I contributed nothing of value to my family, my church, my community, or my relationships with others while draining them of all of their time, talents, resources and energy. That's really hard for someone who has always needed and derived a great deal of satisfaction from a sense of belonging...being a contributing and valued member of a family, a church congregation, a group of friends, etc.
I lost my ability to go to church with my family every Sunday. Members of the Church of Jesus Christ of Latter-day Saints (aka the Mormon Church) spend at least three hours every Sunday in regular church meetings...not including choir practice or any other special meetings. Some people outside the Church suggest that's excessive, but I've always enjoyed it. There's a great deal one learns when they attend three solid hours of sharing thoughts, feelings and testimonies of Jesus Christ and His gospel with others. This weekly tradition, along with personal and family scripture study and prayer, has helped me to develop the faith that has been my foundation through the struggles of the last 19 months. The learning and development of faith is one thing. The sense of fellowship and the relationships one develops is also incredibly important. My family moved to our new home, and thereby changed our ward (or congregation), just three months before my diagnosis. That's just not enough time to really get to know many people and become immersed in the social aspect of the Church. Our ward has been wonderfully supportive through our cancer journey, but it's hard - really hard - for me to not know many of the people with whom my family attends church and to not feel connected to my "ward family."
I lost my looks. I'm not vain, but when I looked in the mirror following transplant, hairless and weighing in at a scant 170 pounds, I didn't see myself. I saw my father just before his death from cancer in 2006. When I went on steroids, and my body ballooned from 170 pounds to nearly 250 pounds in just a couple months, I didn't look much like myself, either. My skin was stretched to the limit and I have the stretch marks to prove it. It's not that I wanted to look movie-star handsome; I just wanted to look like myself.
Anyway, that's a lot to lose. During one clinic visit in late August or early September of last year, I ended up opening up to my PA about the stresses and emotional problems I was having. I finally owned up to the fact that I needed some help dealing with it all. Gratefully, I was told that this issue is very, very common among BMT patients - and I'd imagine all or most cancer patients. That helped me feel better. I was given an anti-depressant medication called Effexor (sp?), and began seeing Sarah. Change didn't dome right away, but gradually things have gotten better - much better. Do I still lose my temper? Yes, but nowhere near as often as I used to. Do I still get down sometimes, grieving for the things I've lost? Yes, but I have some tools to help me get through it now. I'm so incredibly grateful for the therapy I've been through and will continue to go through and for the patience of my wife and children as I work on me.
I guess the last thing I should mention is that I've decided to write a book. I'm still working out the kinks when it comes to the book's scope and focus. Just in making some early notes, I've realized that this thing could really get out of hand when it comes to the quantity of material/pages. I hope to keep the size down to a size that's not intimidating to anyone, but still have enough substance to be of worth to its target audience. Now...whether anyone in the target audience would ever chose to buy or read it, let alone whether or not I can even get it published, is left to be seen. I'll write more about the book as time moves on and I get further into the process.
I guess that's it for now. This post is long enough. =0)
Tuesday, April 1, 2014
Work? Really? Not yet.
Here we are...it's April 1st. I can't believe we're 1/4 of the way through the year! I guess it's good that things are just moving along with no really big news.
I'm only visiting the BMT clinic every other week now with no blood work being done at the Intermountain Medical Center on the off weeks any more. I continue to take fewer and fewer meds every day. At one point, I took close to 50 pills a day, and now it's under 20. The numbers we're seeing in my blood work are about as stable as could be. Nothing remarkable at all. I'm so blessed. There are so many people with Plasma Cell Leukemia who never make it to transplant, through transplant, or beyond transplant with any semblance of decent health. A lot go into the hospital and never come out alive. Every day I thank God that I'm doing so well.
At today's clinic appointment, Noelle and I were talking with Dr. Hoda, and he said I could return to work now if I want or feel the need to. Noelle had asked when it might be safe to do so, and she and I were both anticipating he'd say something like "after you've been reimmunized," or something like that. Surprise! And it wasn't an April Fools Day joke, either. We all agree that part-time to begin is the best option, so we don't overtax my energy levels. Here's the thing...I'm kind of working part-time already with the voice lessons I've been giving for the past two months. AND...I really don't feel the need to go back to a traditional job right now. We've learned how to live off of the Social Security Disability payments I'm receiving, and I'm not interested in taking the chance of getting sick from someone at work for some "job."
I don't remember if I've blogged about this decision yet, but I've decided to not go back to sales if I can avoid it. I'm good at it, but the passion I once had for it is gone. I want to go to work for an organization like the Leukemia and Lymphoma Society, the National Marrow Donor Program (BeTheMatch.org), the Multiple Myeloma Research Foundation, the American Cancer Society, or an organization like those. Working in advocacy, fundraising, public speaking, marketing, event planning, or something like that would be awesome...and something I could be incredibly passionate about. I just need to develop and work my connections in those organizations so when something comes up I can be the first one they call.
I have 12 voice students now and things are going well with that. On May 1st, Amanda VandenAkker and I will be holding a joint recital for our voice students at Riverton Music's recital hall in West Valley City. Abby (who studies voice with Amanda) will be singing "Spark of Creation" and five of my students will be singing as well. I'll also be singing "Agony," a duet from Into the Woods with Ryan Lee (who also studies with Amanda). It will be the first time I've sung in a vocal recital in 11 years - since my graduate recital at CSU Sacramento. Amanda and I have decided to perform together in a joint recital later this summer. We'll each perform a couple sets on our own, then finish with some duets. It's gonna be so fun.
I've also decided, after discussing it with Noelle, that committing to do three 1/2 marathons this year might be a little too aggressive a goal. I mean, really. After what my body has been through, 13.1 miles in one shot is a lot to train for. I've decided to start with a 5K (3.1 miles, which I know I can walk with basically no training at all), then do a 10K (6.2 miles) or two, and later a 15K (9.3 miles). If I can manage that this summer, then maybe we'll shoot for a 1/2 marathon next summer. I just need to take this in steps, I think.
My friends who relapsed and had to go through the transplant process again are doing well. Houston is back home and Rebecca is doing well and should be returning home soon. Miracles keep happening for both of them. Rebecca was sent to the ICU with lungs that were hemorrhaging, and doing really poorly. They honestly weren't sure if she was going to make it. Then one day her condition improved dramatically. It was the same day her family and some others held a special fast for her. Fasting and prayer work. Christ explained to his apostles once that in certain cases, prayer and even priesthood blessings (the laying on of hands) is not enough, and that fasting is a necessary act of faith.
Well, I can't think of anything else to say. There once was a time when updates came fast and furious, sometimes multiple times a week. Gratefully, we've reached a point in which there's just not a lot of news. I'll be hitting one year post-transplant at the end of May, and that will be a more active time for updates. I'll be holding my second annual donor drive, attempting to make contact with my donor, and going through a bunch of tests to ensure that the cancer is still gone. In the mean time, I'll just keep doing what I'm doing and praying for continued wellness every day. It's in God's hands, and I'm good with that. =0)
I'm only visiting the BMT clinic every other week now with no blood work being done at the Intermountain Medical Center on the off weeks any more. I continue to take fewer and fewer meds every day. At one point, I took close to 50 pills a day, and now it's under 20. The numbers we're seeing in my blood work are about as stable as could be. Nothing remarkable at all. I'm so blessed. There are so many people with Plasma Cell Leukemia who never make it to transplant, through transplant, or beyond transplant with any semblance of decent health. A lot go into the hospital and never come out alive. Every day I thank God that I'm doing so well.
At today's clinic appointment, Noelle and I were talking with Dr. Hoda, and he said I could return to work now if I want or feel the need to. Noelle had asked when it might be safe to do so, and she and I were both anticipating he'd say something like "after you've been reimmunized," or something like that. Surprise! And it wasn't an April Fools Day joke, either. We all agree that part-time to begin is the best option, so we don't overtax my energy levels. Here's the thing...I'm kind of working part-time already with the voice lessons I've been giving for the past two months. AND...I really don't feel the need to go back to a traditional job right now. We've learned how to live off of the Social Security Disability payments I'm receiving, and I'm not interested in taking the chance of getting sick from someone at work for some "job."
I don't remember if I've blogged about this decision yet, but I've decided to not go back to sales if I can avoid it. I'm good at it, but the passion I once had for it is gone. I want to go to work for an organization like the Leukemia and Lymphoma Society, the National Marrow Donor Program (BeTheMatch.org), the Multiple Myeloma Research Foundation, the American Cancer Society, or an organization like those. Working in advocacy, fundraising, public speaking, marketing, event planning, or something like that would be awesome...and something I could be incredibly passionate about. I just need to develop and work my connections in those organizations so when something comes up I can be the first one they call.
I have 12 voice students now and things are going well with that. On May 1st, Amanda VandenAkker and I will be holding a joint recital for our voice students at Riverton Music's recital hall in West Valley City. Abby (who studies voice with Amanda) will be singing "Spark of Creation" and five of my students will be singing as well. I'll also be singing "Agony," a duet from Into the Woods with Ryan Lee (who also studies with Amanda). It will be the first time I've sung in a vocal recital in 11 years - since my graduate recital at CSU Sacramento. Amanda and I have decided to perform together in a joint recital later this summer. We'll each perform a couple sets on our own, then finish with some duets. It's gonna be so fun.
I've also decided, after discussing it with Noelle, that committing to do three 1/2 marathons this year might be a little too aggressive a goal. I mean, really. After what my body has been through, 13.1 miles in one shot is a lot to train for. I've decided to start with a 5K (3.1 miles, which I know I can walk with basically no training at all), then do a 10K (6.2 miles) or two, and later a 15K (9.3 miles). If I can manage that this summer, then maybe we'll shoot for a 1/2 marathon next summer. I just need to take this in steps, I think.
My friends who relapsed and had to go through the transplant process again are doing well. Houston is back home and Rebecca is doing well and should be returning home soon. Miracles keep happening for both of them. Rebecca was sent to the ICU with lungs that were hemorrhaging, and doing really poorly. They honestly weren't sure if she was going to make it. Then one day her condition improved dramatically. It was the same day her family and some others held a special fast for her. Fasting and prayer work. Christ explained to his apostles once that in certain cases, prayer and even priesthood blessings (the laying on of hands) is not enough, and that fasting is a necessary act of faith.
Well, I can't think of anything else to say. There once was a time when updates came fast and furious, sometimes multiple times a week. Gratefully, we've reached a point in which there's just not a lot of news. I'll be hitting one year post-transplant at the end of May, and that will be a more active time for updates. I'll be holding my second annual donor drive, attempting to make contact with my donor, and going through a bunch of tests to ensure that the cancer is still gone. In the mean time, I'll just keep doing what I'm doing and praying for continued wellness every day. It's in God's hands, and I'm good with that. =0)
Sunday, March 9, 2014
Thank you, Southern California!
Well, it's been a few weeks. I guess it's time for an update. Hmmm...
At my clinic visit nearly four weeks ago, a test was run to look at my Kappa and Lambda light chains. In simplest terms, these light chains are markers in the blood that can be a sign of Myeloma. If the Kappa-Lambda ratio is above a certain level, it's a good indicator that the Myeloma has returned. The test was done on the 11th of February. It takes about a week for the results to come in. That was a week of nervousness for me. Finding out on the 14th that Rebecca's Leukemia had returned didn't help settle my nerves either. Finally, on Monday or Tuesday, the results came in and there was no phone call from the BMT unit. Noelle and I looked at the results and thought we understood what they meant. The ratio looked totally different from when I was diagnosed. As far as we could tell, everything was fine. Unfortunately, I was still worried. Why? No good reason. Noelle had to talk me off the ledge, so to speak. Finally, when we had our pre-vacation clinic visit on the 21st, Dr. Hoda was able to confirm what Noelle had been telling me for days. I was relieved and felt a little foolish for having been so worried even after the results were in.
This past Tuesday, I had a good clinic visit. My numbers were all great, even my liver numbers, which had been "tickled" at my last couple clinic visits. I guess the only number I'm concerned about is my weight. Ugh. I've been picking up a pound here, a pound there, and now I'm really not in good shape. I need to exercise regularly, starting tomorrow. Anyway...my doctors have begun the long-awaited taper of my Cyclosporine. That's the immuno-suppressive drug I've been on since leaving the hospital last July. As a reminder, the reason we're suppressing my immune system (my donor's immune system, actually) is to avoid GVHD (Graft vs. Host Disease). My donor's immune system can attack various of my systems, such as the gut and GI tract, the skin, the eyes, the liver, the kidneys, the heart, etc. Basically, it can view my different systems/organs as foreign and attack them, similar to how a patient's immune system can view an organ recipient's new organ as foreign and attack it. So, the good thing about tapering my Cyclo is that I can begin to have a functioning immune system. The bad thing is I can have GVHD and be miserable. I had some GVHD in June while in the hospital following my transplant. Unfortunately, that's a good indicator that I'll get it again. We tapered my twice-daily dose from 125 mg to 100 mg, and will continue tapering gradually over the next several months. Slow and steady gives us the best chance to catch and deal with any GVHD symptoms as they come little by little, rather than all at once, which could throw my body into a tailspin.
I've had really low energy this week, and I'm not really sure why. I've been really tired during the day and have fallen asleep every night except Friday without my sleeping pill. Huh.
Over the past two days, Noelle, Abigail and I moved back into our original rooms. It was an even bigger project than moving all our furniture and other "stuff" because Noelle had promised Abby that when she moved back into her room Noelle would paint it. It's a bright blue now. I mean really bright. Noelle is an amazing, multi-talented woman. She does so much for our family. I feel like an absolute worthless bonehead sometimes. Anyway...I'm happy to be back in the master bedroom. David (my brother) is almost done tiling our shower, too. There's just one little thing that needs to be done to finish. For a year and a half, we've been in this home with no shower in the master bathroom, and that problem is almost in the past. Thank you, David! The shower is beautiful!
The last week of February was our family's long-awaited and much-anticipated vacation to Southern California and Disneyland to celebrate my remission. It was EXACTLY what the doctor ordered. Not really - my doctors were pretty nervous about it and about me being around so many people. Anyway, we drove down on Saturday, February 22, the 1st anniversary of my autologous transplant. We left around 5:00 in the morning, and got to North Hills around 4:00. We visited Tim and Kelly (Tim is Noelle's cousin) for their son Camden's birthday party. After a couple hours, we left for Oceanside, where my parents have a timeshare that we were able to use (THANKS, MOM AND DAD!!!). We got in around 8:00 or so, checked in and crashed.
On Sunday, we went to La Jolla, where Noelle's sister, Blair, lives. We hung out on the beach for about 6 hours and the weather was perfect. Brenda, an old friend from Stockton and Sacramento, came to the beach with her boys while her husband, Matt, was in work meetings. So we hung out with them til about noon (I'm not exactly sure - I was napping when they left), and then Blair came with her housemate and best friend, Jo. They brought us lunch and hung out with us for a few hours. After I took my nap and ate some lunch, I decided I wanted to take a walk along the shore. My feet, ankles and legs were swollen and hurting from my blood pressure medication, but I didn't care. On my walk, I was able to reflect a bit on why we were there and how tremendously blessed my family and I have been throughout our cancer journey. Feeling the warm sun on my back, and enjoying the water lapping at my feet, I felt an outpouring of love for and from my Father in Heaven. He has been so good to me and my family. I am so blessed to have my head six feet above ground in stead of six feet under. The statistics for people with Plasma Cell Leukemia and Multiple Myeloma are not good. Every day I wake up with air in my lungs and a pulse in my wrist, I buck those statistics. Sometimes I lose sight of that. Well, the beauty of it all was not lost on me in that 20-minute walk along the shoreline. Sunday evening, an old friend from BYUH came to our timeshare to have dinner with us and visit for a while. Jennifer was in Showcase with us our first year at BYUH, and was Noelle's best friend (and roommate for a while) while I was on my mission. It was so good to catch up with her and laugh a lot. She is so fun.
Monday was day #1 at Disneyland. I love that place! I got my "Disability Pass" when we got there. It was awesome. With the pass, someone who is unable to wait in line with everyone (like me, who can't be surrounded by tons of people breathing their germs on me) can go to guest services booths around the park and tell them which ride they want to ride next and get their pass marked to go to the ride in a certain period of time based on the current wait time for the ride. When you go to the ride at that time, you get to walk through the Fast Pass entrance or through the ride's exit and basically walk onto the ride without waiting in line. It was fantastic. By the time we took a break around 3:30 to walk to the Rainforest Cafe for dinner, we had already done all the must-do rides that were open. When we got to the restaurant, we had a big surprise for the kids...Erick and Linzi Crans had driven down that day, met us for dinner, and were going to hang out with us Tuesday through Friday. The kids (ours and theirs) were all SO excited. Dinner was good, and after dinner we went back into Disneyland to ride more rides and re-do some of our favorites.
Tuesday was day #2 at Disneyland for Noelle and the kids, and a scheduled rest day for me. I'm really glad we had the foresight to do it that way, because after a full day of walking around Disneyland, my feet were swollen and desperately needed a break. That morning, we called the BMT clinic and asked if I could forego my blood pressure medicine for the duration of the trip in hopes that I could get some relief from the swelling. We were told that as long as I checked my blood pressure every day and it stayed below a specific level, I could leave it out of my daily pill-popping routine. Well, the Southern California coast must be good for blood pressure, because mine stayed well below where it needed to be throughout the rest of the trip. In fact, in the week we've been back from our vacation, it's still staying below where it needs to be without my medication. Yippee!!! So, while the rest of my family spent the day at Disneyland with the Crans family, I put my feet up in bed, watched a couple movies, spent some time massaging my feet in the jacuzzi, and just had a really nice, relaxing day.
Wednesday was a scheduled day for the beach and pool. Abby, Michael and I went to the San Diego temple that morning to do some baptisms for the dead (If anyone reading this is confused, please click here to clarify). It was a particularly special experience this time, as we had 21 of our own ancestors for whom we were able to perform baptisms, rather than for people whose names were had by the temple. It was the first time I have ever performed baptisms for my own ancestors who I had personally researched and prepared for the work. It was a very emotional experience for me. I felt their presence there as their ordinances were performed. I knew that they accepted those ordinances and were so happy. Michael and Abby both had a neat experience as well. After getting back from the temple, the Crans family came and we went to the beach to take some family pictures. We got some good ones. Then Erick and I went and played 9 holes of golf. Using clubs we borrowed from the course and the fact that it had been 9 months since I last swung a club made for a long nine holes. Erick and I played "best ball" and still didn't score very well. But we did have fun, and that's the most important thing, right? Wednesday night, we took some more pictures at the beach and made tacos for dinner. It was a good day.
Thursday was our day for California Adventure. We got my disability pass for the day, met the Crans family, and were off. The first thing we wanted to do was go to the new Cars Land and ride the Radiator Springs Racers. Wow. So fun! Then our families split up and we went to the Aladin show with Noelle's Aunt Gail. She got us VIP seating, so we were able to go in first and have our pick of seats. After the show, we waited in the lobby to meet with one of Gail's clients who Gail helped get into the cast of the show about ten years ago. She surprised us by bringing out all of the principles from the show with her - Aladin, Jasmine, Jafar, Iago, the Genie, and the Magic Carpet. We talked for a couple minutes and then took pictures with everyone. So cool. The rest of the day was great. My swollen feet were worth it.
Friday was a scheduled beach/pool day, but the weather was bad. I mean REALLY bad. High winds and rain didn't stop Noelle and the kids from going to the pool and jacuzzi in the morning, though. Seriously, I think they're nuts. I just hung out in the room. Friday afternoon, Noelle and the kids met Jennifer and her kids to see The Lego Movie. The kids really enjoyed it; Noelle thinks it's been over-hyped and that made it less enjoyable for her. She says it's good, but not THAT good. Friday night, the Crans came over for dinner, and the kids all watched a movie while the adults talked. We love the Crans so much and wish, as Linzi has said, that Nevada would disappear so we could be closer. Sorry to our friends who live in Nevada - there's just SO MUCH wasted space that you have to drive through to get from Utah to Californina.
Saturday was our day to travel home, but Noelle decided it was more important to spend just a little more time enjoying the pool, seeing that the nice weather had returned. We hung out at the pool and jacuzzi for a couple hours before heading home. It made for a long, long day, but we were OK with it. It had been a good vacation, and Noelle and I really enjoyed the "down time" we scheduled for the family. Thank you, Southern California, for the respite from the day-to-day life in Utah and for getting me out of the Salt Lake Valley for the first time in a year and a half.
Well, that's about it for now. I'm grateful to know that even though I'm doing pretty well, people are still praying for me on a daily basis. The truth is that with cancer, you're never really "out of the woods," so to speak. It can always come back. We can hope, pray, have faith...but the cancer is never completely out of your life. When we finished our clinic visit on Tuesday, Noelle and I spent some time visiting with Houston and Denise, and Rebecca, in their respective rooms on East 8. Rebecca said some things that struck me. One of them was that she had made the decision to live as though she's going to live, not as the walking dead. That's where goals come into play. Making plans for the future isn't something a person does when they know they're about to die. Noelle and I are planning a week in Park City with our kids this summer - the kids don't know this, so please don't say anything to them. I'm going to take Noelle to Paris, France for her 40th birthday next year. I'm going to walk three 1/2 marathons this summer. These goals will help me focus on the future that I will have...not that I might have...that I will have. It's not about the time you have in your life...it's about the life you have in your time. There's something to think about.
At my clinic visit nearly four weeks ago, a test was run to look at my Kappa and Lambda light chains. In simplest terms, these light chains are markers in the blood that can be a sign of Myeloma. If the Kappa-Lambda ratio is above a certain level, it's a good indicator that the Myeloma has returned. The test was done on the 11th of February. It takes about a week for the results to come in. That was a week of nervousness for me. Finding out on the 14th that Rebecca's Leukemia had returned didn't help settle my nerves either. Finally, on Monday or Tuesday, the results came in and there was no phone call from the BMT unit. Noelle and I looked at the results and thought we understood what they meant. The ratio looked totally different from when I was diagnosed. As far as we could tell, everything was fine. Unfortunately, I was still worried. Why? No good reason. Noelle had to talk me off the ledge, so to speak. Finally, when we had our pre-vacation clinic visit on the 21st, Dr. Hoda was able to confirm what Noelle had been telling me for days. I was relieved and felt a little foolish for having been so worried even after the results were in.
This past Tuesday, I had a good clinic visit. My numbers were all great, even my liver numbers, which had been "tickled" at my last couple clinic visits. I guess the only number I'm concerned about is my weight. Ugh. I've been picking up a pound here, a pound there, and now I'm really not in good shape. I need to exercise regularly, starting tomorrow. Anyway...my doctors have begun the long-awaited taper of my Cyclosporine. That's the immuno-suppressive drug I've been on since leaving the hospital last July. As a reminder, the reason we're suppressing my immune system (my donor's immune system, actually) is to avoid GVHD (Graft vs. Host Disease). My donor's immune system can attack various of my systems, such as the gut and GI tract, the skin, the eyes, the liver, the kidneys, the heart, etc. Basically, it can view my different systems/organs as foreign and attack them, similar to how a patient's immune system can view an organ recipient's new organ as foreign and attack it. So, the good thing about tapering my Cyclo is that I can begin to have a functioning immune system. The bad thing is I can have GVHD and be miserable. I had some GVHD in June while in the hospital following my transplant. Unfortunately, that's a good indicator that I'll get it again. We tapered my twice-daily dose from 125 mg to 100 mg, and will continue tapering gradually over the next several months. Slow and steady gives us the best chance to catch and deal with any GVHD symptoms as they come little by little, rather than all at once, which could throw my body into a tailspin.
I've had really low energy this week, and I'm not really sure why. I've been really tired during the day and have fallen asleep every night except Friday without my sleeping pill. Huh.
Over the past two days, Noelle, Abigail and I moved back into our original rooms. It was an even bigger project than moving all our furniture and other "stuff" because Noelle had promised Abby that when she moved back into her room Noelle would paint it. It's a bright blue now. I mean really bright. Noelle is an amazing, multi-talented woman. She does so much for our family. I feel like an absolute worthless bonehead sometimes. Anyway...I'm happy to be back in the master bedroom. David (my brother) is almost done tiling our shower, too. There's just one little thing that needs to be done to finish. For a year and a half, we've been in this home with no shower in the master bathroom, and that problem is almost in the past. Thank you, David! The shower is beautiful!
The last week of February was our family's long-awaited and much-anticipated vacation to Southern California and Disneyland to celebrate my remission. It was EXACTLY what the doctor ordered. Not really - my doctors were pretty nervous about it and about me being around so many people. Anyway, we drove down on Saturday, February 22, the 1st anniversary of my autologous transplant. We left around 5:00 in the morning, and got to North Hills around 4:00. We visited Tim and Kelly (Tim is Noelle's cousin) for their son Camden's birthday party. After a couple hours, we left for Oceanside, where my parents have a timeshare that we were able to use (THANKS, MOM AND DAD!!!). We got in around 8:00 or so, checked in and crashed.
On Sunday, we went to La Jolla, where Noelle's sister, Blair, lives. We hung out on the beach for about 6 hours and the weather was perfect. Brenda, an old friend from Stockton and Sacramento, came to the beach with her boys while her husband, Matt, was in work meetings. So we hung out with them til about noon (I'm not exactly sure - I was napping when they left), and then Blair came with her housemate and best friend, Jo. They brought us lunch and hung out with us for a few hours. After I took my nap and ate some lunch, I decided I wanted to take a walk along the shore. My feet, ankles and legs were swollen and hurting from my blood pressure medication, but I didn't care. On my walk, I was able to reflect a bit on why we were there and how tremendously blessed my family and I have been throughout our cancer journey. Feeling the warm sun on my back, and enjoying the water lapping at my feet, I felt an outpouring of love for and from my Father in Heaven. He has been so good to me and my family. I am so blessed to have my head six feet above ground in stead of six feet under. The statistics for people with Plasma Cell Leukemia and Multiple Myeloma are not good. Every day I wake up with air in my lungs and a pulse in my wrist, I buck those statistics. Sometimes I lose sight of that. Well, the beauty of it all was not lost on me in that 20-minute walk along the shoreline. Sunday evening, an old friend from BYUH came to our timeshare to have dinner with us and visit for a while. Jennifer was in Showcase with us our first year at BYUH, and was Noelle's best friend (and roommate for a while) while I was on my mission. It was so good to catch up with her and laugh a lot. She is so fun.
Monday was day #1 at Disneyland. I love that place! I got my "Disability Pass" when we got there. It was awesome. With the pass, someone who is unable to wait in line with everyone (like me, who can't be surrounded by tons of people breathing their germs on me) can go to guest services booths around the park and tell them which ride they want to ride next and get their pass marked to go to the ride in a certain period of time based on the current wait time for the ride. When you go to the ride at that time, you get to walk through the Fast Pass entrance or through the ride's exit and basically walk onto the ride without waiting in line. It was fantastic. By the time we took a break around 3:30 to walk to the Rainforest Cafe for dinner, we had already done all the must-do rides that were open. When we got to the restaurant, we had a big surprise for the kids...Erick and Linzi Crans had driven down that day, met us for dinner, and were going to hang out with us Tuesday through Friday. The kids (ours and theirs) were all SO excited. Dinner was good, and after dinner we went back into Disneyland to ride more rides and re-do some of our favorites.
Tuesday was day #2 at Disneyland for Noelle and the kids, and a scheduled rest day for me. I'm really glad we had the foresight to do it that way, because after a full day of walking around Disneyland, my feet were swollen and desperately needed a break. That morning, we called the BMT clinic and asked if I could forego my blood pressure medicine for the duration of the trip in hopes that I could get some relief from the swelling. We were told that as long as I checked my blood pressure every day and it stayed below a specific level, I could leave it out of my daily pill-popping routine. Well, the Southern California coast must be good for blood pressure, because mine stayed well below where it needed to be throughout the rest of the trip. In fact, in the week we've been back from our vacation, it's still staying below where it needs to be without my medication. Yippee!!! So, while the rest of my family spent the day at Disneyland with the Crans family, I put my feet up in bed, watched a couple movies, spent some time massaging my feet in the jacuzzi, and just had a really nice, relaxing day.
Wednesday was a scheduled day for the beach and pool. Abby, Michael and I went to the San Diego temple that morning to do some baptisms for the dead (If anyone reading this is confused, please click here to clarify). It was a particularly special experience this time, as we had 21 of our own ancestors for whom we were able to perform baptisms, rather than for people whose names were had by the temple. It was the first time I have ever performed baptisms for my own ancestors who I had personally researched and prepared for the work. It was a very emotional experience for me. I felt their presence there as their ordinances were performed. I knew that they accepted those ordinances and were so happy. Michael and Abby both had a neat experience as well. After getting back from the temple, the Crans family came and we went to the beach to take some family pictures. We got some good ones. Then Erick and I went and played 9 holes of golf. Using clubs we borrowed from the course and the fact that it had been 9 months since I last swung a club made for a long nine holes. Erick and I played "best ball" and still didn't score very well. But we did have fun, and that's the most important thing, right? Wednesday night, we took some more pictures at the beach and made tacos for dinner. It was a good day.
Thursday was our day for California Adventure. We got my disability pass for the day, met the Crans family, and were off. The first thing we wanted to do was go to the new Cars Land and ride the Radiator Springs Racers. Wow. So fun! Then our families split up and we went to the Aladin show with Noelle's Aunt Gail. She got us VIP seating, so we were able to go in first and have our pick of seats. After the show, we waited in the lobby to meet with one of Gail's clients who Gail helped get into the cast of the show about ten years ago. She surprised us by bringing out all of the principles from the show with her - Aladin, Jasmine, Jafar, Iago, the Genie, and the Magic Carpet. We talked for a couple minutes and then took pictures with everyone. So cool. The rest of the day was great. My swollen feet were worth it.
Friday was a scheduled beach/pool day, but the weather was bad. I mean REALLY bad. High winds and rain didn't stop Noelle and the kids from going to the pool and jacuzzi in the morning, though. Seriously, I think they're nuts. I just hung out in the room. Friday afternoon, Noelle and the kids met Jennifer and her kids to see The Lego Movie. The kids really enjoyed it; Noelle thinks it's been over-hyped and that made it less enjoyable for her. She says it's good, but not THAT good. Friday night, the Crans came over for dinner, and the kids all watched a movie while the adults talked. We love the Crans so much and wish, as Linzi has said, that Nevada would disappear so we could be closer. Sorry to our friends who live in Nevada - there's just SO MUCH wasted space that you have to drive through to get from Utah to Californina.
Saturday was our day to travel home, but Noelle decided it was more important to spend just a little more time enjoying the pool, seeing that the nice weather had returned. We hung out at the pool and jacuzzi for a couple hours before heading home. It made for a long, long day, but we were OK with it. It had been a good vacation, and Noelle and I really enjoyed the "down time" we scheduled for the family. Thank you, Southern California, for the respite from the day-to-day life in Utah and for getting me out of the Salt Lake Valley for the first time in a year and a half.
Well, that's about it for now. I'm grateful to know that even though I'm doing pretty well, people are still praying for me on a daily basis. The truth is that with cancer, you're never really "out of the woods," so to speak. It can always come back. We can hope, pray, have faith...but the cancer is never completely out of your life. When we finished our clinic visit on Tuesday, Noelle and I spent some time visiting with Houston and Denise, and Rebecca, in their respective rooms on East 8. Rebecca said some things that struck me. One of them was that she had made the decision to live as though she's going to live, not as the walking dead. That's where goals come into play. Making plans for the future isn't something a person does when they know they're about to die. Noelle and I are planning a week in Park City with our kids this summer - the kids don't know this, so please don't say anything to them. I'm going to take Noelle to Paris, France for her 40th birthday next year. I'm going to walk three 1/2 marathons this summer. These goals will help me focus on the future that I will have...not that I might have...that I will have. It's not about the time you have in your life...it's about the life you have in your time. There's something to think about.
Saturday, February 15, 2014
When Science Isn't Enough...
Sometimes science and all the medical advances in the world just aren't enough...
I've had a cold for the past several days, and yesterday was running a temperature of about 100 degrees all day. I woke up this morning a little after 3:00 and figured I should check my temperature. I grabbed my phone to use it's flashlight function so I wouldn't wake up Noelle with my bedside table lamp. On my phone I saw that Rebecca Dutson, a friend who Noelle and I met walking the halls of East 8 several months ago, had "tagged" me in a Facebook post 2 hours before. I wasn't prepared for what I read.
Her Leukemia is back.
I laid awake in bed for nearly two hours, crying off and on. How is this possible? I know the statistics. Not everyone makes it. Now, with Rebecca and our friend Houston Holbrook, I have two friends - people who have strengthened me and whom I have grown to admire so much - who are having to go through transplants again because the first one didn't work. Will the second go-around be any different? Were their first donor's cells just not strong enough to fight the cancer, or is the cancer too strong for any stem cells to fight it off? Will they be able to beat the odds stacked against them?
What does Rebecca have to say? "What now? We move forward with hope. My family and I are united in our understanding that God STILL knows best, even after being blindsided today. He knows my capacities and won't push me beyond, and knows where I need to be." Part of what makes Rebecca such an incredible person is her perspective. It's a big part of why she is loved by Noelle and I and who-knows-how-many others. We're leaving for a week at the beach and Disneyland next Saturday, and I wish we could take Rebecca and Houston (and Houston's wife, Denise) along with us. They are both suiting up for a battle they've already fought. It's a battle no one should ever have to fight, and they're having to do it twice. I wish I could give them my tickets to Disneyland and let them enjoy it and get some extra smiles in before they walk through the valley of the shadow of death...again. I almost feel guilty that we're taking this trip to celebrate my remission while two dear friends are wondering if they'll ever get to hear the words, "you're in remission" again.
Rebecca is only about 160 days post-transplant. I'm 100 days ahead of her, and as far as I know, I'm still cancer-free, but for how long? For life? A decade? A year? A week? Cancer is so unpredictable. When I had my clinic visit on Tuesday, they took an extra vile of blood to test for Kappa and Lambda light chains, which are leukemic cancer markers in the blood. If my blood is clear, I'm still cancer-free. If not...well, in the words of Dr. Ashe, "Let's not think about that." Now, with this news and the light chain results still not in, it's hard to not think about it. It's hard to avoid fearing the worst.
When we sent out our Christmas cards at the beginning of December, we sent one to Elder Bednar (The member of the Quorum of the Twelve Apostles who visited us in our home a year earlier (see the post about it here)). He replied with a nice letter, telling us he's happy to hear of my remission. He also enclosed with his letter a copy of a CES fireside talk he gave on March 3, 2013. It's called "That We Might 'Not...Shrink' (D&C 19:18)." In part of his talk, he speaks about a 23-year old young man who was diagnosed with bone cancer just about three weeks after his marriage to his 20-year old sweetheart. When Elder Bednar visited them in the hospital, he asked them a very interesting question: "do you have the faith not to be healed? If it is the will of our Heavenly Father that you are transferred by death in your youth to the spirit world to continue your ministry, do you have the faith to submit to His will and not be healed?" That's a hard question - albeit an important one - to answer. I've pondered on that question several times since first reading Elder Bednar's talk. Do I have faith sufficient to accept my Father in Heaven's will for me, whatever it may be? Some days I feel strong enough to say I do. Other days I wonder how I would respond if given the same news that Houston and Rebecca have been given. Would I be strong enough to "move forward with hope," like Rebecca is committed to do? Or would I just fall apart?
I'm a "Type A" personality. Having no control over things is really, really hard for me. It's been one of the hardest things about my cancer, even since being declared in remission in September. The fears of a relapse are real...not pervasive on a daily basis, but something I think about regularly. I think it's natural. I'm sure that most, if not all, cancer survivors deal with it in their own way. I was counseled earlier this week that one of the best things I can do to mitigate my fears is to "live in the moment" as much as possible...to be aware of and grateful for the blessings of each moment. Having goals that I'm working towards, like my 1/2 marathons I'll be walking later this year, is something that can also be very therapeutic and can distract me from the "what-ifs" over which I have no control. I think that's great advice. In her post last night, Rebecca ended with this thought: "Just a reminder - enjoy every moment, dear friends. Life is good." That's a great message.
Cancer sucks, but life is good. Thanks, Rebecca.
I've had a cold for the past several days, and yesterday was running a temperature of about 100 degrees all day. I woke up this morning a little after 3:00 and figured I should check my temperature. I grabbed my phone to use it's flashlight function so I wouldn't wake up Noelle with my bedside table lamp. On my phone I saw that Rebecca Dutson, a friend who Noelle and I met walking the halls of East 8 several months ago, had "tagged" me in a Facebook post 2 hours before. I wasn't prepared for what I read.
Her Leukemia is back.
I laid awake in bed for nearly two hours, crying off and on. How is this possible? I know the statistics. Not everyone makes it. Now, with Rebecca and our friend Houston Holbrook, I have two friends - people who have strengthened me and whom I have grown to admire so much - who are having to go through transplants again because the first one didn't work. Will the second go-around be any different? Were their first donor's cells just not strong enough to fight the cancer, or is the cancer too strong for any stem cells to fight it off? Will they be able to beat the odds stacked against them?
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| Rebecca and I at last October's LLS Light the Night Walk |
When we sent out our Christmas cards at the beginning of December, we sent one to Elder Bednar (The member of the Quorum of the Twelve Apostles who visited us in our home a year earlier (see the post about it here)). He replied with a nice letter, telling us he's happy to hear of my remission. He also enclosed with his letter a copy of a CES fireside talk he gave on March 3, 2013. It's called "That We Might 'Not...Shrink' (D&C 19:18)." In part of his talk, he speaks about a 23-year old young man who was diagnosed with bone cancer just about three weeks after his marriage to his 20-year old sweetheart. When Elder Bednar visited them in the hospital, he asked them a very interesting question: "do you have the faith not to be healed? If it is the will of our Heavenly Father that you are transferred by death in your youth to the spirit world to continue your ministry, do you have the faith to submit to His will and not be healed?" That's a hard question - albeit an important one - to answer. I've pondered on that question several times since first reading Elder Bednar's talk. Do I have faith sufficient to accept my Father in Heaven's will for me, whatever it may be? Some days I feel strong enough to say I do. Other days I wonder how I would respond if given the same news that Houston and Rebecca have been given. Would I be strong enough to "move forward with hope," like Rebecca is committed to do? Or would I just fall apart?
I'm a "Type A" personality. Having no control over things is really, really hard for me. It's been one of the hardest things about my cancer, even since being declared in remission in September. The fears of a relapse are real...not pervasive on a daily basis, but something I think about regularly. I think it's natural. I'm sure that most, if not all, cancer survivors deal with it in their own way. I was counseled earlier this week that one of the best things I can do to mitigate my fears is to "live in the moment" as much as possible...to be aware of and grateful for the blessings of each moment. Having goals that I'm working towards, like my 1/2 marathons I'll be walking later this year, is something that can also be very therapeutic and can distract me from the "what-ifs" over which I have no control. I think that's great advice. In her post last night, Rebecca ended with this thought: "Just a reminder - enjoy every moment, dear friends. Life is good." That's a great message.
Cancer sucks, but life is good. Thanks, Rebecca.
Friday, January 31, 2014
Another Month Gone...
Well, it's January 31st. Somehow the first month of the year is over. I'm thinking it has something to do with getting older that time is just flying by.
I mentioned in my last post that I'm beginning to teach voice lessons. I'm up to 6 students, but still have room for more. My website and my Facebook page are doing well, and my voice studio (where I now sit) is done. I'm teaching lessons on Wednesdays and Thursdays for now. If my schedule becomes such that I need to add another day, I will, but for now I'm keeping it to just two days a week. I'm really happy to be able to be teaching again.
Jenna is upstairs in what used to be Isaiah's room, and Isaiah is sharing Michael's room with him until the upstairs project is finished. The upstairs project...yeah... So, we were going to put in two rooms - now it's one very big room that'll be put in. It'll measure about 19' X 12'. The boys will share the room, and the basement room they're in now will become the play room. I'll be doing some of the work myself...at least the work that I know how to do and that isn't dust-intensive. That includes the framing of the wall and the closet (I'll have to get someone else to cut the wood to avoid my exposure to the sawdust), the painting, and the installation of the ceiling fans. Someone from our old ward will wire the electrical because I don't want to electrocute myself or burn down the house. We'll also have to get someone else to do the drywall and texturing because that can be a very dusty project. Unfortunately, our tax return will be about $1,000 less than we thought it would be, so the project will get started and done a little later than we had hoped. We'll be using income from the voice lessons I teach to buy the materials, so I need to get as many students as I can as soon as I can. I wish we had the money to just hire someone to do it all, but it's just not realistic right now.
I talked about my 1/2 marathon goals in my last post. Instead of doing the Utah Valley 1/2 on June 14th, I'll be doing the American Fork Canyon 1/2 on June 21st. It benefits cancer patients, and there are some others from East 8 who will be doing the race, so Noelle and I figured it was the better race to do.
If you didn't know already, CANCER SUCKS. On Monday, Noelle and I moved Jenna and Isaiah from where they were to where they are now. I took Jenna's mattress and went to carry it up the stairs, and I had to stop and take a break about 1/3 of the way up the stairs. I just wasn't strong enough to do it in one shot. I got kinda upset...no...really upset. It just hit me how abnormal my "new normal" is. Because I've been feeling so healthy lately, I just don't think about how different my strength levels are until the reality of it smacks me in the face. I threw a little temper tantrum right there on the stairs, pounding my fist into the mattress a few times and burying my face in my hands. It can be pretty hard to accept what cancer has done to me sometimes.
Last night was the awards banquet for last October's LLS Light the Night Walk. It was held at the Market Street Grill in Cottonwood. Great event. Really good food. Next year, I want to earn an award for my fundraising efforts. I've already named my team for this October's walk: Philpott's Fighters. Not really original, but it works. I think my fundraising goal is going to be big...like $10,000 or something like that. I have more time and energy to work on it and plan a strategy to hit a very aggressive goal. Katie Kersys, who is the campaign manager for Light the Night, says she'll work with me on my goal and how to reach it.
I've also tentatively scheduled another Be The Match donor drive for Saturday, May 31st. I'm still waiting to hear back from Trina, who's the lady at the National Marrow Donor Program who helped organize last summer's drive.
On the health front, things are going pretty well. We're tapering my Hydrocortisone pills, hoping that my adrenal gland kicks in and starts producing the hormones it normally would produce on its own without the help of the Hydrocortisone. After tapering the Hydrocortisone, or possibly as we taper it, we'll also taper the Cyclosporine I'm on. That's my immuno-suppressive drug that's limiting the possibility of GVHD. Because I had some GVH of the gut in the hospital following my transplant, there's a good chance I'll get some more GVH as we taper the Cyclo. We don't know for sure, but there's a good possibility of it. We'll see...
That's about it for now. I just need things to do to keep me from going stir crazy. I've already filed my taxes and organized my office/voice studio. I don't know what to do now. It's hard to not have an 8 to 5 for almost a year and still be looking ahead to another year of the same. Here's hoping I can stay out of a straitjacket. =0)
I mentioned in my last post that I'm beginning to teach voice lessons. I'm up to 6 students, but still have room for more. My website and my Facebook page are doing well, and my voice studio (where I now sit) is done. I'm teaching lessons on Wednesdays and Thursdays for now. If my schedule becomes such that I need to add another day, I will, but for now I'm keeping it to just two days a week. I'm really happy to be able to be teaching again.
Jenna is upstairs in what used to be Isaiah's room, and Isaiah is sharing Michael's room with him until the upstairs project is finished. The upstairs project...yeah... So, we were going to put in two rooms - now it's one very big room that'll be put in. It'll measure about 19' X 12'. The boys will share the room, and the basement room they're in now will become the play room. I'll be doing some of the work myself...at least the work that I know how to do and that isn't dust-intensive. That includes the framing of the wall and the closet (I'll have to get someone else to cut the wood to avoid my exposure to the sawdust), the painting, and the installation of the ceiling fans. Someone from our old ward will wire the electrical because I don't want to electrocute myself or burn down the house. We'll also have to get someone else to do the drywall and texturing because that can be a very dusty project. Unfortunately, our tax return will be about $1,000 less than we thought it would be, so the project will get started and done a little later than we had hoped. We'll be using income from the voice lessons I teach to buy the materials, so I need to get as many students as I can as soon as I can. I wish we had the money to just hire someone to do it all, but it's just not realistic right now.
I talked about my 1/2 marathon goals in my last post. Instead of doing the Utah Valley 1/2 on June 14th, I'll be doing the American Fork Canyon 1/2 on June 21st. It benefits cancer patients, and there are some others from East 8 who will be doing the race, so Noelle and I figured it was the better race to do.
If you didn't know already, CANCER SUCKS. On Monday, Noelle and I moved Jenna and Isaiah from where they were to where they are now. I took Jenna's mattress and went to carry it up the stairs, and I had to stop and take a break about 1/3 of the way up the stairs. I just wasn't strong enough to do it in one shot. I got kinda upset...no...really upset. It just hit me how abnormal my "new normal" is. Because I've been feeling so healthy lately, I just don't think about how different my strength levels are until the reality of it smacks me in the face. I threw a little temper tantrum right there on the stairs, pounding my fist into the mattress a few times and burying my face in my hands. It can be pretty hard to accept what cancer has done to me sometimes.
Last night was the awards banquet for last October's LLS Light the Night Walk. It was held at the Market Street Grill in Cottonwood. Great event. Really good food. Next year, I want to earn an award for my fundraising efforts. I've already named my team for this October's walk: Philpott's Fighters. Not really original, but it works. I think my fundraising goal is going to be big...like $10,000 or something like that. I have more time and energy to work on it and plan a strategy to hit a very aggressive goal. Katie Kersys, who is the campaign manager for Light the Night, says she'll work with me on my goal and how to reach it.
I've also tentatively scheduled another Be The Match donor drive for Saturday, May 31st. I'm still waiting to hear back from Trina, who's the lady at the National Marrow Donor Program who helped organize last summer's drive.
On the health front, things are going pretty well. We're tapering my Hydrocortisone pills, hoping that my adrenal gland kicks in and starts producing the hormones it normally would produce on its own without the help of the Hydrocortisone. After tapering the Hydrocortisone, or possibly as we taper it, we'll also taper the Cyclosporine I'm on. That's my immuno-suppressive drug that's limiting the possibility of GVHD. Because I had some GVH of the gut in the hospital following my transplant, there's a good chance I'll get some more GVH as we taper the Cyclo. We don't know for sure, but there's a good possibility of it. We'll see...
That's about it for now. I just need things to do to keep me from going stir crazy. I've already filed my taxes and organized my office/voice studio. I don't know what to do now. It's hard to not have an 8 to 5 for almost a year and still be looking ahead to another year of the same. Here's hoping I can stay out of a straitjacket. =0)
Wednesday, January 15, 2014
Mid-January Update
It's been a while, so I figured it was about time for an update.
I've got high blood pressure. Not on my own, but my cyclosporine (my immuno-suppressive drug) has given it to me. As we taper the cyclo gradually, we should see my BP drop to more healthy levels. In the mean time, though, I've now got a BP medicine on board. We'll see how it works.
I need a goal for physical health/fitness right now to get me off of my butt and working out. A number on a scale has never been enough of a motivator for me. I really don't care if I weigh 190 or 220, as long as I and my doctors are convinced I'm healthy. So, here's what I've decided to work towards: I've decided to walk at least one, and possibly three half marathons this year. As a reminder to anyone who may be reading this and has forgotten, the myeloma has made my bones very, very brittle, so I'm not allowed to run...ever...unless my life depends on it from a safety standpoint. I'm currently considering the following:
I've got high blood pressure. Not on my own, but my cyclosporine (my immuno-suppressive drug) has given it to me. As we taper the cyclo gradually, we should see my BP drop to more healthy levels. In the mean time, though, I've now got a BP medicine on board. We'll see how it works.
I need a goal for physical health/fitness right now to get me off of my butt and working out. A number on a scale has never been enough of a motivator for me. I really don't care if I weigh 190 or 220, as long as I and my doctors are convinced I'm healthy. So, here's what I've decided to work towards: I've decided to walk at least one, and possibly three half marathons this year. As a reminder to anyone who may be reading this and has forgotten, the myeloma has made my bones very, very brittle, so I'm not allowed to run...ever...unless my life depends on it from a safety standpoint. I'm currently considering the following:
- June 14 (Saturday) - Utah Valley Half Marathon - This one starts in the canyon and ends in Provo. Nice, gentle decline in elevation.
- August 16 (Saturday) - Park City Half Marathon - Starts and ends at the same location. 460 feet up and 460 feet down. This one's at a higher elevation, so it may be the toughest of the three, but it's still not very bad with elevation gain/loss.
- September 27 (Saturday) - Layton Half Marathon - The flattest of the three courses. Starts on the bridge to Antelope Island in the Great Salt Lake, and ends in Layton.
The biggest challenge with doing these races is the logistics of it all. They all start in the morning, and with 5 kids, that can end up being a challenge on a Saturday. For example, the Utah Valley 1/2 requires that participants get on a bus from the finish line to the starting line by around 4:30am. That means I'd have to leave my home by about 3:00 in the morning to get there, sign in and be on the bus in time. That's no problem for me, but what about my family? I think the thing to do is to find at least one person to walk each race with me, preferably someone from the Salt Lake valley. That way, I can get to the race in time (with my walking buddy) and my family can come later to cheer us on along the course. Noelle wants to walk at least one with me, but that would mean that someone else would have to bring our kids to cheer us on. I'm not sure how we'll be able to do this all, but it's very important to me. Noelle and I were planning on doing the Layton one last year, and then my diagnosis came. Perhaps someone will read this and decide to walk one or more of these with me and the logistics element will go away. I don't know. I've started training pretty early. I walked 3.1 miles Tuesday morning in the "balmy" 44 degree weather. I need to do 2 miles today and begin a regimen that will have me ready (but not burnt out) come June. More details to follow as we get closer.
I've decided it's time to begin teaching voice lessons again. I was teaching before my diagnosis and loving it, but with the diagnosis, and specifically the stem cell transplants, I had to stop. I'm ready to get back on that horse again. I've developed a Facebook page (facebook.com/PhilpottVocalStudio) and website (philpottvocalstudio.wix.com/philpottvocal). In just a few days, I've gotten over 100 "Likes" on my Facebook page (still hoping for more...) and a couple students for voice lessons. I won't be doing this full-time. I'm just doing it (and not charging anywhere near what other voice teachers are charging) mostly for the creative outlet. We're going to convert Jenna's bedroom into my studio - probably this weekend if anyone wants to help us move the piano =0) - and building two bedrooms in what is now the upstairs entertainment/play room. That will probably/hopefully happen by the end of March. I have a basic floor plan ready for the upstairs conversion, but NONE of the know-how to do the work myself. Also, with the dust, etc from the construction, I think my doctors would have a cow if I were to attempt to do the work myself. It's just putting up a couple walls, two closets, and doing some electrical work. We also need someone who knows how to do tile to do the tile in our master bathroom so Noelle and I can move back upstairs. If anyone has any experience in either of those fields, or knows someone who does, please let us know. We'd love to get this done by the end of March, like I said.
I'm feeling pretty dang good. My energy levels are good and I feel pretty healthy. I've battled a cold and also something new to me...Human Metapneumo Virus. the virus was only discovered in 2001, from what I've found online, and acts much like the common cold. The problem is it's closely linked to RSV, which is a bad one for me to get with no immune system. So, I've been very careful around others, 'cause I'm contagious, but also, I've been extra careful about not going anywhere where I could get worse. We're planning to take our family to Disneyland the final week of February - just over 5 weeks away!!! I can't afford a hospital stay which would possibly prevent me from going. Our tax return and income from the voice lessons I teach should pay for the trip with some money left over to help us pay for the renovation upstairs.
We traded in our beloved 2005 Chevy Suburban for a 2012 Dodge Grand Caravan on New Year's Eve. The decision was purely logical (more legroom for the growing kids)/financial (lower cost of ownership every moth with HUGE gasoline savings, lower mileage, less maintenance/repairs, etc. I could see us driving to Disneyland with the Suburban that has over 96,000 miles on it and having it break down somewhere along the way. On the other hand, the Caravan has just over 35,000 miles on it, so the chances of a breakdown are minimal. Also, the Caravan is still under warranty til we hit 100,000 miles. We got AN AMAZING DEAL on the Caravan from Larry H. Miller Dodge in Sandy - I highly recommend you go see Nate there if you want/need a new car. Let him know John Philpott sent you, and he'll take extra special care of you...
There's really not a lot else to discuss at this point. Things are slowly returning to a point where I feel more and more "normal" every day. The biggest challenge for me is remembering that I have NO IMMUNE SYSTEM. I still can't go where I want to go or do what I want to do. For example, all seven of us, along with my brothers David and Jeff and their families, have the Pass of All Passes from Seven Peaks. On this coming Monday, which the kids have off of school for Martin Luther King Jr's birthday observance, people with the Pass of All Passes can get into the Utah Grizzlies (minor league) hockey game FREE. I can't go. My whole family will be there except me. It sucks rotten eggs. I wanted to do a half marathon in Las Vegas in November, but I can't because there's nowhere for me to stay in a hotel because they're all germ-ridden, filthy holes. I have some friends in Vegas, but I can't expect them to clean their home to the degree that it would need to be cleaned for me to crash with them. I still can't shop where/when I want to shop or eat at restaurants at normal meal times. Life isn't easy, but it's a life. It's so much better than being six feet under, and I have to remind myself of that regularly to keep the proper perspective. Here's to being above ground. =0)
Thursday, January 9, 2014
Darned Prednisone!
Sorry to anyone who may be reading this...
This post was originally written on August 27, 2013, but I just corrected a typo, and the post was re-dated with today's date. Lame...
Well, it's been a couple weeks, and I figure about time for an update. I'm writing this from my iPad I got for my birthday/Father's Day because I'm not allowed upstairs. My medicine regimen currently has me on 110mg/day of a steroid called Prednisone. Dr. Peterson, the head of the BMT program at LDS Hospital, says a low daily dose of Prednisone is 7.5 mg, and I'm almost 15 times that amount. With all the fuss over steroids in pro sports, I figured steroids would make me stronger, but they make me weaker...extremely weak. I think I've actually gotten weaker - not stronger - since my release from the hospital on July 12. Due to this weakness and the fear of falling down the stairs and breaking my neck, Noelle and I had to move downstairs from our master suite into Abby's room and now Abby has the master bedroom and bath a week or so ago. My doctors are tapering the level of steroids I'm on (we began at 180mg/day), but we'll get down to about 80 or 90mg/day and have to slow or stop the taper until we feel like my body is ale to progress without GVHD getting in the way. Gratefully, there have been no signs or evidence of any GVHD in the eyes, skin, gut, etc. since a couple days following my release from the hospital last month. Just some dry skin (no rash) and that's it.
This post was originally written on August 27, 2013, but I just corrected a typo, and the post was re-dated with today's date. Lame...
Well, it's been a couple weeks, and I figure about time for an update. I'm writing this from my iPad I got for my birthday/Father's Day because I'm not allowed upstairs. My medicine regimen currently has me on 110mg/day of a steroid called Prednisone. Dr. Peterson, the head of the BMT program at LDS Hospital, says a low daily dose of Prednisone is 7.5 mg, and I'm almost 15 times that amount. With all the fuss over steroids in pro sports, I figured steroids would make me stronger, but they make me weaker...extremely weak. I think I've actually gotten weaker - not stronger - since my release from the hospital on July 12. Due to this weakness and the fear of falling down the stairs and breaking my neck, Noelle and I had to move downstairs from our master suite into Abby's room and now Abby has the master bedroom and bath a week or so ago. My doctors are tapering the level of steroids I'm on (we began at 180mg/day), but we'll get down to about 80 or 90mg/day and have to slow or stop the taper until we feel like my body is ale to progress without GVHD getting in the way. Gratefully, there have been no signs or evidence of any GVHD in the eyes, skin, gut, etc. since a couple days following my release from the hospital last month. Just some dry skin (no rash) and that's it.
So, for now, I have once-weekly outpatient physical and occupational therapy appointments, along with weekly clinic visits with a nurse, a PA or NP, and a doctor (or two) and bi-weekly blood/lab tests. In mid-September, I'll have another bone marrow biopsy. That will be a big defining moment for me, as it will show weather we are in or heading into remission or if the cancer is back. If I'm in remission, that's good, and we continue to just check in with my body through the regular clinic visits and watch for Graft vs. Host Disease. If the cancer is back in force, then there's really nothing that can be done, as we have already exhausted our treatment options with the two transplants. I'm optimistic, as my body has responded very well thus far to everything we've done to/for it. I came out of three months with no "maintenance chemotherapy" following my autologous transplant with only 1% cancer cells in my blood. Dr. Ashe said that was much better than expected. Now that my donor's stem cells are producing my blood, we can hope that it's all clean. If not, we'll cross that bridge when we come to it.
It will be about a year before I begin to feel "right," as I'm without an immune system and have to wait until next May/June to receive my first immunizations. Yes, I'll have to be immunized like a baby, starting from scratch. MMR, tetanus, everything a baby gets. I have to start over.
A few weeks ago, I was blessed to have another visit from "the guys." They were here for about 2 1/2 days, and it was great. We ate some really good food and had a great time hanging out together. We went to a Salt Lake Bees game, took a walk along the Jordan River Parkway. Oh, also around Silver Lake, now that it's not covered in snow like it was back in March when they came then. Tanks for your visit, Mike, Steve, Tim and John. Here's a shot of us up at Silver Lake.
Well, somehow, I can't think of anything else to write right now, perhaps other than this... The Philpott family is and has been extremely blessed through these past ten months. We recognize and acknowledge the hand of the Lord in our lives every day. He has been so good to us in sending people to our aid when we have most needed their help. From gifts and food left on our doorstep during the holidays to annonymous deposits into a trust account that was set up for us at Key Bank to people coming over just to check in and say hello and let us know they're thinking about us. We're grateful for it all. It just goes to show that God uses us as His hands and feet for Him on earth.
Saturday, December 21, 2013
Scattered Pictures
Over the past few days, I've been having some memories come to me from my "three weeks of hell" back in June and July. I feel the need to get them down here in my blog for posterity's sake. For anyone besides myself who may be reading this, you can go to my post from July 12, 2013, called "An Unexpected Hiatus" if you want to know (or need a reminder of) what I reference by "three weeks of hell." Here are a few memories I now have...
I remember dreading night time. I had trouble communicating and knew I needed to sleep. Unfortunately, sleep is hard to come by when you have limited ability to move your own body or readjust your own position in bed. I remember wanting to have my feet raised or lowered, or being too hot or too cold, or needing to have my position in bed changed, and only being able to groan or grunt at my aide or nurse. Inside my head, I was screaming complete sentences at them, but grunts and groans were all that would come out. They had to play a guessing game with me and they got so frustrated that I couldn't communicate exactly what I needed. Other times, I knew I was uncomfortable, but couldn't even figure out for myself what I needed changed. My brain just wasn't working well enough.
My brain functioning at only about 1/2-power caused countless other issues. I had little to no warning for when I needed to use the bathroom, so I had to have a Foley catheter "placed." =0S After a few days with it in, it was taken out, and I didn't want it back in. I still had trouble knowing when I had to go, but refused to have one put back in. Any time Noelle and a nurse would discuss it, I'd become lucid enough to cry out in protest, "Foleys suck!" Noelle says it was funny because there would be days when that was all I could say that was intelligible. I guess if something was important enough, I could break through the fog of incoherence just enough...
I remember trying to communicate with my nurses and aides and having them try to spell what I wanted or needed. Unfortunately, they would start with, "What does it start with?" and they'd have to guess. It was so weird to me that a) I could spell the word in my mind without a problem, but I couldn't speak it, and b) that my nurses and aides couldn't read my mind. I also got really mad when part-way through a word, it would change in my mind because the process took so long. Then the nurses would get REALLY confused! Someone told Noelle once that I had them spell something that wasn't even a real word.
I remember calling one of my CNA's (sorry, Kara) a moron. Why, I do not recall. She didn't deserve it, and I'll owe her forever for putting up with me and not holding it against me, except in jest. She knows I wasn't "with it," so she never got angry about it. Also, there was a time when my nurse, Ashley, and Noelle were helping me walk to the nurses' station to request a certain nurse for the next day, and I got a cramp in my calf. Ashley asked if I wanted her to massage it and I said I did. She began, and then I asked her to massage a little higher, then higher still. After 3 or 4 requests to massage higher up my leg, I shouted out, "Are you trying to get FRESH with me?!?" Noelle tells me that was a good moment because some of "the real John" came out. I was just joking with her after baiting her for the punchline, and it's one of the few truly happy memories from those three weeks.
As I mentioned in my post back in July, I had lots of tests run on my over the first two weeks to try to determine what could be done to fix the fact that the toxins weren't filtering out, or to determine what possible long-term effects they were causing or could cause. I don't remember many of the tests, but I remember being taken to various floors of the hospital in my bed or in a wheelchair. Noelle tells me that the vast majority of the tests were done with me in my bed, and only a couple were with me being transported in my wheelchair. I remember two MRIs. One was a regular one, but the other was one where they locked my head in place for close to an hour. That was THE WORST!!! Noelle sat outside the machine for that one, just touching and stroking my lower leg to let me know that she was there. I remember having a feeding tube put down my throat into my stomach and needing Noelle there because the techs that were trying to place it couldn't understand me. I gagged and gagged on the tube as it went through my nasal passages and down my throat. It was a pretty awful experience.
I remember Noelle leaving me one night and me crying because I felt so much better with her around. I didn't want to be babysat overnight by some orderly. I felt like Noelle was the only one who understood what I needed.
I remember when one of my doctors, Dr. Ashe, was playing the "squeeze my hand if..." communication game with me, and somehow she was doing it wrong. I don't remember what was "wrong" about the questions she was asking me, but there was a definite difference between how she was doing it and how Noelle did it. I got so frustrated that I looked at Noelle and shouted something like, "She's doing it wrong! Help her do it right!" And then I went back to not speaking. It was sort of like the issue with the Foley.
Another really good memory is when I started doing better with my physical therapists and started walking. The first time I made it to the nurses' station, Kim (one of my favorite nurses) was there. I said in my high, squeaky voice (from lack of use), "Hi, Kim." and then I started to cry. I was so happy to be out of my room and beginning to be mobile again. I remember Dr. Ashe walking a lap around the floor with me and giving me a big hug and telling me she was proud of me. I also remember the smiles on the nurses faces when I would pass the nurses' station. They were SO happy to see me up and about, and I felt so proud that I cried.
I remember playing Five Crowns with Noelle once, and being so confused and unable to think strategically. I finally gave up, showed my cards to Noelle, and asked, "would you tell me what to do?" I just couldn't figure it out.
I remember some visits from family and friends. On my birthday, my family members came to say hello. I remember hugging Christy (Linda) and telling her, "When I hug you, I see a purple frog." Then after hugging Gwen, I said, "When I hug you, I see a purple frog in dreadlocks." I vaguely remember George and Uraisa coming into the room, but I don't remember speaking with them or hugging them. I remember Noelle bringing the kids (against my protests), and having a hard time hugging them or talking with them. On other days, I remember the visits of others. For example, my home teacher, Jeff Kendall, came with Jeff (my brother) to give me a priesthood blessing by the laying on of hands. I remember Matt Moore and Joseph Scott each coming for a night. I vaguely remember Larry Hiller coming, as well. I also remember a day when Jeff brought his boys and talked with me for a little while. I remember having some trouble putting together sentences or staying focused on what I was trying to say from the beginning of a sentence to the end of it. But I remember telling him that I knew I was starting to get better and that I felt the Holy Ghost with me, comforting me. After a few minutes, I just couldn't focus on our conversation anymore. It was too hard for my brain. Jeff told me it was OK as I just sat there crying. Yes, I did a lot of crying.
Well, that's about as much as I can remember for now. Merry Christmas, and whether you're in the hospital or not, be sure to count your blessings.
I remember dreading night time. I had trouble communicating and knew I needed to sleep. Unfortunately, sleep is hard to come by when you have limited ability to move your own body or readjust your own position in bed. I remember wanting to have my feet raised or lowered, or being too hot or too cold, or needing to have my position in bed changed, and only being able to groan or grunt at my aide or nurse. Inside my head, I was screaming complete sentences at them, but grunts and groans were all that would come out. They had to play a guessing game with me and they got so frustrated that I couldn't communicate exactly what I needed. Other times, I knew I was uncomfortable, but couldn't even figure out for myself what I needed changed. My brain just wasn't working well enough.
My brain functioning at only about 1/2-power caused countless other issues. I had little to no warning for when I needed to use the bathroom, so I had to have a Foley catheter "placed." =0S After a few days with it in, it was taken out, and I didn't want it back in. I still had trouble knowing when I had to go, but refused to have one put back in. Any time Noelle and a nurse would discuss it, I'd become lucid enough to cry out in protest, "Foleys suck!" Noelle says it was funny because there would be days when that was all I could say that was intelligible. I guess if something was important enough, I could break through the fog of incoherence just enough...
I remember trying to communicate with my nurses and aides and having them try to spell what I wanted or needed. Unfortunately, they would start with, "What does it start with?" and they'd have to guess. It was so weird to me that a) I could spell the word in my mind without a problem, but I couldn't speak it, and b) that my nurses and aides couldn't read my mind. I also got really mad when part-way through a word, it would change in my mind because the process took so long. Then the nurses would get REALLY confused! Someone told Noelle once that I had them spell something that wasn't even a real word.
I remember calling one of my CNA's (sorry, Kara) a moron. Why, I do not recall. She didn't deserve it, and I'll owe her forever for putting up with me and not holding it against me, except in jest. She knows I wasn't "with it," so she never got angry about it. Also, there was a time when my nurse, Ashley, and Noelle were helping me walk to the nurses' station to request a certain nurse for the next day, and I got a cramp in my calf. Ashley asked if I wanted her to massage it and I said I did. She began, and then I asked her to massage a little higher, then higher still. After 3 or 4 requests to massage higher up my leg, I shouted out, "Are you trying to get FRESH with me?!?" Noelle tells me that was a good moment because some of "the real John" came out. I was just joking with her after baiting her for the punchline, and it's one of the few truly happy memories from those three weeks.
As I mentioned in my post back in July, I had lots of tests run on my over the first two weeks to try to determine what could be done to fix the fact that the toxins weren't filtering out, or to determine what possible long-term effects they were causing or could cause. I don't remember many of the tests, but I remember being taken to various floors of the hospital in my bed or in a wheelchair. Noelle tells me that the vast majority of the tests were done with me in my bed, and only a couple were with me being transported in my wheelchair. I remember two MRIs. One was a regular one, but the other was one where they locked my head in place for close to an hour. That was THE WORST!!! Noelle sat outside the machine for that one, just touching and stroking my lower leg to let me know that she was there. I remember having a feeding tube put down my throat into my stomach and needing Noelle there because the techs that were trying to place it couldn't understand me. I gagged and gagged on the tube as it went through my nasal passages and down my throat. It was a pretty awful experience.
I remember Noelle leaving me one night and me crying because I felt so much better with her around. I didn't want to be babysat overnight by some orderly. I felt like Noelle was the only one who understood what I needed.
I remember when one of my doctors, Dr. Ashe, was playing the "squeeze my hand if..." communication game with me, and somehow she was doing it wrong. I don't remember what was "wrong" about the questions she was asking me, but there was a definite difference between how she was doing it and how Noelle did it. I got so frustrated that I looked at Noelle and shouted something like, "She's doing it wrong! Help her do it right!" And then I went back to not speaking. It was sort of like the issue with the Foley.
Another really good memory is when I started doing better with my physical therapists and started walking. The first time I made it to the nurses' station, Kim (one of my favorite nurses) was there. I said in my high, squeaky voice (from lack of use), "Hi, Kim." and then I started to cry. I was so happy to be out of my room and beginning to be mobile again. I remember Dr. Ashe walking a lap around the floor with me and giving me a big hug and telling me she was proud of me. I also remember the smiles on the nurses faces when I would pass the nurses' station. They were SO happy to see me up and about, and I felt so proud that I cried.
I remember playing Five Crowns with Noelle once, and being so confused and unable to think strategically. I finally gave up, showed my cards to Noelle, and asked, "would you tell me what to do?" I just couldn't figure it out.
I remember some visits from family and friends. On my birthday, my family members came to say hello. I remember hugging Christy (Linda) and telling her, "When I hug you, I see a purple frog." Then after hugging Gwen, I said, "When I hug you, I see a purple frog in dreadlocks." I vaguely remember George and Uraisa coming into the room, but I don't remember speaking with them or hugging them. I remember Noelle bringing the kids (against my protests), and having a hard time hugging them or talking with them. On other days, I remember the visits of others. For example, my home teacher, Jeff Kendall, came with Jeff (my brother) to give me a priesthood blessing by the laying on of hands. I remember Matt Moore and Joseph Scott each coming for a night. I vaguely remember Larry Hiller coming, as well. I also remember a day when Jeff brought his boys and talked with me for a little while. I remember having some trouble putting together sentences or staying focused on what I was trying to say from the beginning of a sentence to the end of it. But I remember telling him that I knew I was starting to get better and that I felt the Holy Ghost with me, comforting me. After a few minutes, I just couldn't focus on our conversation anymore. It was too hard for my brain. Jeff told me it was OK as I just sat there crying. Yes, I did a lot of crying.
Well, that's about as much as I can remember for now. Merry Christmas, and whether you're in the hospital or not, be sure to count your blessings.
Tuesday, December 17, 2013
The Best Way Out Is Always Through
Last night, I went to see the show "The Forgotten Carols" with Abigail. She earned a date with Noelle or I for getting straight A's in the first quarter of the school year. The show was great. I expected good, but not great. It was so good for me to get out, particularly to see a live, professional theatrical performance. After the show, the south end of the school was locked, and so Abby and I had to walk around from the north end of the school, where the auditorium is to the south end. It's a pretty big high school, so the long walk to the car in 17 degree weather kinda wore me out, but oh well.
I've been doing OK lately. Not great, but not awful. My central line is out, which is awesome. After 14 months of having to shower with something hanging out of my arm or my chest, having to always cover it with Saran Cling Wrap and/or medical tape, it’s so nice to not have to worry about it. The spot where the catheter entered my chest is now completely healed up, with only a scar to show for it. Yippee Skippee! I get poked once a week now for my blood tests, but I can deal with that. It’s definitely a worth-while trade-off. The past few days, I've woken up feeling pretty nauseous. Today I wasn't able to eat anything until noon, and even then, it was just a piece of toast with some strawberry preserves. I was warned by my doctors that my appetite might drop off a bit when we got off of the prednisone (the steroid that was making me look like the elephant man), but I wasn't prepared for the nausea and the near-complete lack of an appetite. Hopefully it doesn't last forever.
I found this meme on Facebook today, as posted by the organization, StandUp2Cancer.org.
It got me thinking...
Early on in my cancer struggle, somebody told me, "John, it isn't fair." I told them, "If God feels it's fair, then it's right." Since then I have gone through hell and I have come back. My journey is one that has taught me much. I would never give back what I've learned about God, my Savior, and myself through this journey. I agree wholeheartedly with Robert Frost who said, "The best way out is always through." Going through my trial has given me perspective and knowledge and understanding that I never could have gotten any other way. I have seen the selfishness that used to infect and pervade my soul. Now I see the selflessness that blesses and enlarges the souls of those around me. I have been forced to receive as those around me have felt compelled to give. Simon Peter said that Jesus went "went about doing good." So many of Jesus' angels in human form have done the same thing in behalf of me and my family. Their example has not been lost on me. So don't pity me for this thing called Cancer which infected my body, because it did not infect my soul, my spirit or my life. On the contrary, it taught me. It inspired me. It made me dig deep to find out who I really am, and determine who I really can become, want to become and vow to become. Some people view Cancer as a premature end to mortal life. I view it as an early preview and precursor to my immortal life which is yet to come. I am learning now how to live for eternity. I thank God for trusting me to learn from this experience by going through it.
I have had a change of heart about something. Easter used to be my favorite holiday, and Christmas my second favorite. You see, Christmas - the birth of Jesus of Nazareth, really - gains its meaning in the atonement that Jesus wrought 34 years later. Easter is when we celebrate Christ's victory over death (through the resurrection which we will all now receive) and over sin (through his suffering in the Garden of Gethsemane and on the cross, granting us the opportunity to repent of our sins and be forgiven). Without the atonement, the birth of Christ would have been far less meaningful, almost insignificant. For that reason, Easter has long been my favorite holiday. NOW, however... for the second Christmas in a row, I have been first-hand witness to, and the recipient of, such tremendous generosity and kindness that my heart has been changed. Christmas is and always has been Noelle's favorite holiday because there's an entire month or so of kindness and people going out of their way to be generous and giving to others. Now that I've had two Decembers in a row of experiencing that first-hand, plus one very special Christmas when I was 11 when people took care of our family when my dad was laid off, I can't help but say that Christmas is now my favorite holiday. Easter hasn't lost its meaning, but Christmas seems to inspire more goodness in people. I wish people would be this selfless and nice year-round, but in our society of increasing self-centeredness, where things that are fleeting and meaningless are adored and even idolized, one month of people turning outward and thinking of others first is pretty remarkable. Some friends (both known and anonymous) have given us money and gifts to help us provide a very memorable and merry Christmas for our children. It's humbling. It's inspiring. Noelle and I are already discussing how we can pay it forward in years to come. I'm sure I'll post more about it all after Christmas.
Anyway, I guess that's about it for now. If anyone else but me reads this, I hope you have a very merry Christmas!
Saturday, December 7, 2013
November
So, November was a good month. It's a month when my thoughts always turn to the many things I have to be grateful for. We made our annual Gratitude Turkey poster, shown below, where we write down many of the blessings we're thankful for throughout the month. This year's poster was more full than I remember any previous years' posters being.
For every day of the month (some days I was a few behind), I made a Facebook post about something I was grateful for. Here's a list of the things for which I publicly expressed my gratitude:
1. Being cancer-free
2. Noelle
3. My membership in the church
4. My five kids
5. The scriptures
6. My siblings
7. My parents
8. My education
9. My home
10. Blessing the sacrament / Michael passing the sacrament for the first time
11. Food
12. Hand Sanitizer =0)
13. Utah
14. Santa Rosa
15. "The Guys"
16. Medicine
17. Music
18. Noelle's friends
19. Electronics
20. BYUH
21. Autumn
22. My ward
23. Opera
24. Books
25. My doctors, mid-levels and nurses on East 8
26. The removal of my central line
27. Faith and hope
28. (Thanksgiving) My Stem Cell Donor
29. The Christmas Season
30. Jesus Christ
When you have cancer and meet and get to know others with cancer, you're bound to meet with some bad news from time to time. Noelle and I have gotten to know some amazing people who are in the fight with various types of blood cancers, as well. November brought some bad news to a couple Noelle and I have gotten to know pretty well, Houston and Denise Holbrook. Houston went through absolute hell just to get to the point that they could do a transplant, and a few weeks after his transplant they did a bone marrow biopsy to find out if the graft was "taking" or not. The results showed that his leukemia had returned in force. 69% of his marrow was leukemic and this meant his transplant wasn't working, or at least wasn't working yet. For a young guy who had endured so much - four solid months in the hospital, several weeks of which were absolute hell - just to get to transplant, it made me want to scream out, "THIS ISN'T FAIR! WHY IS THIS HAPPENING TO HIM?!?" Honestly, it made me feel guilty for how relatively easy my path to remission has been. I just got so mad. Gratefully, over the past few weeks, things have gotten better for my friend, and there's still hope.
One of the things that sucks about knowing an increasing number of fellow cancer patients is that you know we're not all going to make it. That's just the reality of the statistics we face. So far, I've been one of the fortunate ones. But how many of my fellow patients whose stories I follow through blogs and Facebook posts and personal visits WON'T be among the fortunate ones? There's not a single one of us that's an awful person who deserves to die, so why will some of us have to? It makes me absolutely sick to think about it. I have always felt an assurance that I'd be OK in the end and that God has a few more things for me to do on this earth before I say goodbye. But one of the patients whose story I follow has always had a rather pessimistic view of things since their diagnosis. They don't seem to feel any peace about what they're going through or what outcome will come their way. Is that attitude reflective of a pervading sense that they will not be one of the fortunate ones, or is it that the pessimistic attitude may actually lead them to a poor outcome. I don't know. I do know, however, with whom I'd rather converse and spend my time, and it's not the chronically pessimistic. Cancer is hard enough without someone always moaning, groaning and complaining about it in your ear.
On a much more positive note, I got my Central Line removed from my chest last Tuesday. It was a pain to deal with when I showered, and with my chest hair growing in, the dressing around it always itched like poison ivy. So now it's out and I've got a big hole in my chest, like someone shot me with a .22. Well, actually I HAD a hole in my chest but now I've got a big scab. Soon I won't even need a band aid over it. And, a really fun thing about getting that darned thing out of me is that we can soon travel outside of the 45-minute radius from LDS Hospital, as my risk of infection drops significantly without a central line. The last week of February, we intend to go well outside that 45-minute radius as a family with a celebratory trip to Disneyland, one of the few things I love about Southern California (the other two are the beaches and that my sweetheart has roots there). Here's hoping all goes well and I can avoid any hospital stays or major setbacks that could derail plans for that trip. Positive thinking and steering clear of sick people should get us there. =0) Crossing my fingers...
For every day of the month (some days I was a few behind), I made a Facebook post about something I was grateful for. Here's a list of the things for which I publicly expressed my gratitude:
1. Being cancer-free
2. Noelle
3. My membership in the church
4. My five kids
5. The scriptures
6. My siblings
7. My parents
8. My education
9. My home
10. Blessing the sacrament / Michael passing the sacrament for the first time
11. Food
12. Hand Sanitizer =0)
13. Utah
14. Santa Rosa
15. "The Guys"
16. Medicine
17. Music
18. Noelle's friends
19. Electronics
20. BYUH
21. Autumn
22. My ward
23. Opera
24. Books
25. My doctors, mid-levels and nurses on East 8
26. The removal of my central line
27. Faith and hope
28. (Thanksgiving) My Stem Cell Donor
29. The Christmas Season
30. Jesus Christ
When you have cancer and meet and get to know others with cancer, you're bound to meet with some bad news from time to time. Noelle and I have gotten to know some amazing people who are in the fight with various types of blood cancers, as well. November brought some bad news to a couple Noelle and I have gotten to know pretty well, Houston and Denise Holbrook. Houston went through absolute hell just to get to the point that they could do a transplant, and a few weeks after his transplant they did a bone marrow biopsy to find out if the graft was "taking" or not. The results showed that his leukemia had returned in force. 69% of his marrow was leukemic and this meant his transplant wasn't working, or at least wasn't working yet. For a young guy who had endured so much - four solid months in the hospital, several weeks of which were absolute hell - just to get to transplant, it made me want to scream out, "THIS ISN'T FAIR! WHY IS THIS HAPPENING TO HIM?!?" Honestly, it made me feel guilty for how relatively easy my path to remission has been. I just got so mad. Gratefully, over the past few weeks, things have gotten better for my friend, and there's still hope.
One of the things that sucks about knowing an increasing number of fellow cancer patients is that you know we're not all going to make it. That's just the reality of the statistics we face. So far, I've been one of the fortunate ones. But how many of my fellow patients whose stories I follow through blogs and Facebook posts and personal visits WON'T be among the fortunate ones? There's not a single one of us that's an awful person who deserves to die, so why will some of us have to? It makes me absolutely sick to think about it. I have always felt an assurance that I'd be OK in the end and that God has a few more things for me to do on this earth before I say goodbye. But one of the patients whose story I follow has always had a rather pessimistic view of things since their diagnosis. They don't seem to feel any peace about what they're going through or what outcome will come their way. Is that attitude reflective of a pervading sense that they will not be one of the fortunate ones, or is it that the pessimistic attitude may actually lead them to a poor outcome. I don't know. I do know, however, with whom I'd rather converse and spend my time, and it's not the chronically pessimistic. Cancer is hard enough without someone always moaning, groaning and complaining about it in your ear.
On a much more positive note, I got my Central Line removed from my chest last Tuesday. It was a pain to deal with when I showered, and with my chest hair growing in, the dressing around it always itched like poison ivy. So now it's out and I've got a big hole in my chest, like someone shot me with a .22. Well, actually I HAD a hole in my chest but now I've got a big scab. Soon I won't even need a band aid over it. And, a really fun thing about getting that darned thing out of me is that we can soon travel outside of the 45-minute radius from LDS Hospital, as my risk of infection drops significantly without a central line. The last week of February, we intend to go well outside that 45-minute radius as a family with a celebratory trip to Disneyland, one of the few things I love about Southern California (the other two are the beaches and that my sweetheart has roots there). Here's hoping all goes well and I can avoid any hospital stays or major setbacks that could derail plans for that trip. Positive thinking and steering clear of sick people should get us there. =0) Crossing my fingers...
Monday, November 4, 2013
October
October was a pretty good month.
Not a lot has happened on the medical front during October. My steroids have been tapered each week so now I'm down to 15mg/day. When I left the hospital in July after my 3 weeks of hell, I was on 180mg/day of Prednisone, a steroid with a "normal" dosage of 7.5mg/day. So, coming down from 180mg to 15mg is a big deal. If all goes well and I continue to be free of any infections or symptoms of GVHD, we'll be able to continue tapering the steroid. On Tuesday (tomorrow), we would drop down to 10mg/day, and then the following week, we'd go off of Prednisone and switch to hydrocortisone, which is something my body should be making on its own. After being off of the steroids, we would very, very gradually begin tapering my Cyclosporine (or "Cyclo"), which is the immunosuppressive drug I'm on right now. When I say very gradually, I mean about once every three months we would drop it down by 25mg/day. I'm currently taking 150mg in the morning and 125mg at night, so only tapering by about 25mg/day every few months, you can see it'll take a while before I'd be completely off of the Cyclo. We need to go slowly with the tapering of Cyclo because with every taper, my risk of GVHD increases. With decreased levels of the immunosuppressive drug in my body, the immune system I will acquire from my donor will be more able to attack my body's systems like my gut, bowels, skin, liver, eyes, etc. It just depends on whether or not my new immune system will view my other systems as "foreign" because it's used to my donor's body's systems. When I was in the hospital following my second transplant, I did experience some minor GVHD of the gut, which just makes me throw up a lot. I HATE throwing up, so I hope I can avoid more of that down the road. Gratefully, GVHD of the gut isn't life-threatening...just an annoyance.
The swelling and water retention I've gotten from the steroids continues, though it's mostly in my face, neck and torso now, and not so much in my legs, ankles and feet like before. every once in a while, I'll have a day when my ankles will decide to swell a little, but it's nothing like before. Noelle says the swelling in my head, neck and torso are coming down a little, but I don't see/feel it. I still look like someone stuck a bicycle pump up my nose and didn't know when to stop pumping. Oh well. It's only cosmetic. One of our favorite PAs at LDSH says the swelling will decrease even more slowly than it came on as we taper and ultimately remove the steroids altogether. Also, as we taper the Prednisone, there's some fatigue that comes with it. I think I've begun to exerience that, as this week I've been falling asleep on the couch or in bed in the mid-mornings. I wake up tired, and by around 9 or 10, I have trouble keeping my eyes open. I think it'll just take my body a while to get used to the lack of steroids.
Gratefully, with the tapering of the steroids, I've found it a little easier to keep my temper under control. That was a big issue in July and August, when my steroid levels were at their highest. They can cause undue levels of aggression and boy, did I feel it. Noelle had to put me in time out a few times. With some medication and counseling to go along with the tapering of the steroids, though, it's been much more under control of late.
I've been in the mood for Christmas for the past few weeks. I think it's because I missed out on Christmas last year. I was dealing with the onset of pneumonia and didn't feel very well. I was also going through chemotherapy last December, and not feeling like myself. Although I wasn't experiencing the worst symptoms chemo patients have to go through, I was fatigued, food didn't taste good, and I was pretty weak, so I couldn't help with all of the activities and decorating and cooking and cleaning like I would have wanted to. Gratefully, this year should be different. I've been listening to Christmas music a couple times a week for the past few weeks...during October! I've never been this ready for the Christmas season this early.
The Light the Night walk on the 12th of October was a really neat event. We look forward to being a part of it every year. My team was able to raise close to $1,200 to go towards leukemia and lymphoma research. We hope to be able to generate much more in donations in coming years. As for the event, there was food provided by Texas Roadhouse, games and activities for the kids and live music for everyone. The event is called Light the Night because everyone who raises $100 or more is given a lighted balloon to carry as they do the walk. The balloons are in three different colors: red for supporters of blood cancer patients, white for survivors, and yellow in remembrance of someone who has lost their battle with blood cancer. As I walked with my white balloon, and my family surrounded me with their red ones, I was overwhelmed to see all the yellow balloons around us. It was really humbling and sad. It gave me this immense feeling of gratitude that my family wasn't there - without me - holding yellow balloons.
I received my "working diagnosis" of CLL (Chronic Lymphocitic Leukemia) 13 months ago today, and my official diagnosis of MM/PCL (Multiple Myeloma/Plasma Cell Leukemia) 11 days later. The statistics I found over the first few weeks weren't encouraging. Less than 1/2 of PCL patients make it a year beyond diagnosis. I knew I had to ignore the published data and become my own statistic. God is a God of miracles. As my family and I have partnered with Him over the last year with lots of fasting and prayers, we have seen miracle after miracle. I attribute a lot of that also to the hundreds of prayers that have been offered in behalf of me and my family by so many others every day since word got out last October. My life could have been represented last month by a bunch of yellow balloons, but God has seen fit to rescue me from this disease and grant me some additional time on this earth before moving on. I'm unspeakably grateful to Him for that. Whatever He wants or needs me to do with the remainder of my life, I'll do it. I owe Him that. I just hope I'll be able to stay enough in tune with the Holy Spirit that I will always know His will for me.
Well, that's about it for now. It's funny sometimes when I sit down to blog and feel like I don't have much to say, and then the post ends up being several paragraphs long. Those who know me well won't be surprised by that. =0)
Sunday, September 29, 2013
Remission, Light the Night and Phil the Pott
REMISSION!!!!
What a great word! I am in remission! The results are in from my Day 100 blood tests and bone marrow biopsy. 100% of my bone marrow and stem cells are donor cells (my doctors were hoping to see at least 50%), and there is no sign of cancerous cells found in my marrow or blood! I am so incredibly grateful to my Father in Heaven for answering prayers and granting me this amazing blessing. I also owe a lot to my team of doctors, nurses and aides in LDS Hospital's BMT Unit, as well as all of the scientists, researchers, fundraisers and support staff at organizations like the Multiple Myeloma Research Foundation (MMRF) and the Leukemia and Lymphoma Society (LLS), who are responsible for the medical advances that have made possible what was not possible 10 years ago. The treatments, procedures and medications I have received have saved my life. Am I cured? Well, the doctors are hesitant to call it a cure for a few years, but for all intents and purposes, that's what it potentially amounts to. Can the cancer come back? Yes, but with 100% of my stem cells and marrow being donor cells, it's highly unlikely.Now, the key is to stay healthy. I still have no immune system. It's like I'm a newborn baby in that respect. Getting a donor's stem cells is kind of like hitting "reset" on the immune system and starting over in life. So, while I'm cancer-free, I'm not completely out of the woods yet. It'll still be about a year (at least) before I can return to work, and about two or three years before my checkups at LDS Hospital's BMT Unit are down to a quarterly schedule. With the cold and flu season upon us, I have to be extremely vigilant about exposure to anyone with a fever, runny nose, cough, sore throat, earache, or any other cold or flu symptom. Catching a cold or flu bug could easily turn into pneumonia and a stay at the hospital, perhaps even ICU. We check our kids' temperatures regularly to ensure they're not exposing me to anything.
OK, everyone. I know there are a lot of people who read this and that I'm not just keeping a personal journal here, even though, that's my primary focus. On Saturday, October 12 (just under 2 weeks away), the Leukemia and Lymphoma Society (LLS) will be hosting the Light the Night Walk at Sugar House Park in Salt Lake City. For those who are not familiar with the Light The Night Walk, here's some basic info about it from the LLS:
The Leukemia & Lymphoma Society’s Light The Night Walk funds treatments that are saving the lives of blood cancer patients (like John Philpott) today. LLS is making cures happen. And it’s all happening now. Not someday, today.
Friends, families and co-workers form fundraising teams and consumers help by donating at retail outlets. These efforts culminate in inspirational, evening walks in nearly two hundred communities each fall across North America.
Participants of all ages are welcome. Fundraising efforts help hundreds of thousands of blood cancer patients. And at the event, you will enjoy a fun, family friendly event, with music, refreshments and entertainment.
I have been blessed tremendously by what the LLS does. I'm raising funds to help others be blessed by the LLS's efforts in the same way I have. On the right side of this page is a link to my fundraising site for the Light The Night Walk. If everyone who reads this would donate just $5 or $10, that would go a long way in helping me and my team make an impact. Of course, the larger the donation, the larger the impact. Thank you in advance to everyone who makes a donation. So far, my "team" (those who are walking with me and raising funds with me) consists only of me, Noelle, our kids, and my brothers, Jeff and David and their families. I would love to have others join us on the walk. If you join the team and raise $100 in donations, you get a t-shirt, lighted balloon and food catered by Texas Roadhouse at the event, and more importantly, the knowledge that you're supporting something that saves lives like my own. Here's something else to consider...if you join the team, your personal donations count towards the $100 you need to raise for your t-shirt and other stuff. Please help. I'd love to have a huge group joining and walking with my team, which I've named Phil the Pott for Leukemia. Let me know if you'd like to participate or if you have any questions. Thanks so much.
My strength and energy continue to improve, as we continue to taper the amount of steroids I'm taking, and as I continue to be as active as my body will let me. I'm focusing my diet on high-protein foods, and trying to rebuild the muscle I've lost. If anyone has any great high-protein recipes to share with me, email them to me (philpott672@gmail.com) or share them with me on Facebook.
Well, that's about it for now. More to come soon.
Friday, September 6, 2013
Nothing Left to Do But Wait - Day 100 Has Come
This evening, we had some fun with pizza, root beer floats, a movie and Dance Party 4, which we picked up from RedBox and the kids want for Christmas. If tonight is any indication, I think they'll get it. They had a blast when I wasn't telling them to be careful about and shelves and everything on them falling onto kids who moved too far towards the wall on the right. I think we need to do something about the set-up in our rumpus room. I've got an idea for how to do it, but I can't move anything around right now because I'm still so weak. I wanted to upload a couple video clips from tonight, but the site is being difficult and isn't letting me. I'm hoping Noelle knows how to do it right and can help me. We had a lot of fun watching the kids shake their booties and laughed quite a bit. We need more laughter in our home.
I've been dealing (as has my family, unfortunately) with some mood issues caused by steroids and a bit of depression. I've begun working with a therapist who says it's natural for me to have mood swings and to suffer from depression and anger issues as my role at home has changed and as I've lost the ability to label myself with words that I've always associated with key aspects of my identity like "healthy" and "breadwinner." She says that those things can weigh heavily on a person and negatively affect self-esteem, self-worth and relationships as the anger and depression impact the ways we communicate with others. I've always had a bit of a temper, but it's gotten worse over the last several months and I've damaged the relationships I need to be able to rely on the most right now. My therapist used to be a social worker on East 8 and she's very familiar with the clinical, emotional and psychological issues and losses that BMT patients go through. I just had my first visit with her this week and I'm hoping weekly visits with her will help me (and my relationships with my family) a lot.
Yesterday was Day 100, post-transplant, which means it's time for a bone marrow biopsy and other tests to see how my body has responded. I try not to be nervous, but it's hard. There's nothing I can do, which is the most frustrating thing. We've done everything we can do. There are no other treatments, transplants or anything else we can do. If the transplant hasn't worked, we'll see a lot of cancer cells, a lot of my old marrow, and no real progress from where we began last fall, and I'll die. If there's been a partial response, we'll see some sort of progress (a good amount of donor cells, decreased cancer cell counts, etc.), but we won't necessarily know where it's headed, and future tests will have to be done to determine that. We could also see a tremendously positive response, with a very high level of my marrow cells being donor cells, few or no cancerous white blood cells in the marrow or blood stream, and a system that appears headed for a potentially long remission. There may even be some other options as far as what we may see, but I don't even know. I just know that what we find is what we find, and there's nothing we'll be able to do about it from a treatment standpoint. We just run with whatever my body is doing. At least that's my understanding at this point. I'm very hopeful about my prognosis, as I have been from the beginning, but right now, the whole it's-out-of-my-hands thing is very real. I've done everything I could possibly do. There's nothing left for us to do but wait to see where my body is and what comes next.
Noelle has been a saint and an angel through all of this. She has borne the brunt of everything over the past eleven months...nearly a year since my shoulder injury that started this whole adventure. Noelle's influence in my life and that of the kids can't be overstated. She has dealt with the kids' and my tantrums and moodiness with such a Christ-like attitude and demeanor. She inspires and surprises me, even after more than 16 and a half years of marriage. I worry about her melting down sometimes, but she finds a way to keep it together. I wonder if she ponders or reflects on the lyrics to one of my favorite hymns, as I do at times, to hold on when the rope gets slippery:
I need thee every hour, most gracious Lord;
No tender voice like thine can peace afford.
I need thee every hour; stay thou nearby;
Temptations lose their power when thou art nigh.
I need thee every hour, in joy or pain;
Come quickly and abide, or life is vain.
I need thee every hour; teach me thy will,
And thy rich promises in me fulfill.
I need thee every hour, most Holy One;
Oh make me thine indeed, thou blessed Son.
I need thee, Oh, I need thee;
Every hour I need thee.
Oh bless me now, my Savior;
I come to thee.
I'm sure I'll have that hymn in my mind on Monday, as I'm going through my biopsy and other tests.
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