We decided to sell our home of 26 years. That means sifting through years of memories and boxes of stuff. It means discarding the old to make room for the new. I see a lot of similarities in this move and my preparing for life with an incurable cancer.
Apparently I’m not content to let life settle into a routine. Even though I’ve entered a very happy holding pattern with my disease and maintenance therapy, I’ve learned life is never that simple.
We’ve decided to sell our family home of 26 years and move. The move will be short in distance (only a few miles north), but far in change of life. The process has consumed a great deal of my time, energy, and attention.
We raised four wonderful children, now all adults, and welcomed our first grandchildren to this home. We host nearly 30 family members here every Thanksgiving, a cherished tradition for everyone. A lifetime of happy memories was created within these walls and the hidden corners of the woods surrounding the home. The time has come, however, to move on.
Of course, moving means packing and sorting through years of trinkets, toys, children’s art projects, and photos. We’ve been so busy, I haven’t had much time to be sentimental. However, memories are thick. As I come across a special item, I smile, remember, and place it in the coveted position of being preserved and carried forward to our new home. Only a few special items get saved.
Not everything is a valued treasure. I can’t count the number of trips we’ve made to donate items to the local thrift store, or to the dump to simply dispose of junk.
What things go?
Souvenirs and memorabilia that were gathered, but hold no value today. Gifts received and gifts never given, that were never used or shared. The broken and bulky things that should have been thrown out the day they were put aside when we promised to “get to it one day.” The parts and pieces of things I thought I would need in the future, but now I can’t even identify. The old and used items that were replaced, but were saved in case they might be useful for someone some day. All of it, shoved in the back of a closet, placed high on a shelf, or in the attic; out of sight and out of mind, until we were forced to confront and deal with it.
The move to the new house is exciting. It will be a new adventure. We are already picking out colors for carpets and walls. We are thinking about minor remodels and improvements we can do right away to make the home ours. We are imagining ourselves in our new home, with our family and friends, entertaining again this coming Thanksgiving. This home provides us opportunities our old home didn’t, new views, and a fresh perspective.
I’m sure there is a metaphor lurking here.
My diagnosis two years ago made me reevaluate so much of my future life. What I thought might happen over the next twenty or more of my “golden years” shifted dramatically. Not that I’ve decided those years are lost, but I don’t want to sit idly today expecting those years to come. What I do today, how I live right now, has become increasingly important, and I want to be sure I’m doing the things that will make me and my family happy.
For instance, I assessed some of my work projects and dropped commitments I’d had for several years. I realized the time I was spending on the projects just wasn’t worth it to me. My continued effort on the projects was not necessary to the projects’ success and wasn’t something I enjoyed doing. Over the last two years, I’ve evaluated the projects I’m working on, or I was asked to contribute to, with a more critical eye.
Today, I savor every moment I spend with my grandkids. They make me smile. They make me happy. Very simple things, like watching them play with a toy by themselves, or using their imagination, warm my heart. I share in their wonder when they witness the simplest things for the first time. My four adult children all live within an hour, and I see them frequently. We all just shared another holiday meal together. The time I spend with family is the most precious gift I have.
I’m also looking at relationships with people past and present. I want to stay close to people who are important to me, who know me and support me. While I don’t need to pare down my list of friends, it’s important to spend time with the special people in my life and perhaps avoid confrontations with others who are less than fulfilling.
Multiple myeloma has focused my vision to see the clutter of my world. I can identify things I’ve just let hang around me that take my time and energy but bring me little joy. By sorting through and ending my attachment to the projects and commitments that are less important, I can devote more time to the more meaningful and joyful parts of my life.
Living with maintenance treatments is new and challenging. While I could choose to focus on the possible dangers of the toxicity of the drugs or the relapse of my disease, I choose to understand how my body reacts to a treatment cycle, adjust to that, and move forward.
I have a disease that needs to be treated and may ultimately shorten my time here. But it also gave me the opportunity to clean out my life, discard things I’ve been carrying with me for no good reason, and bring the people I love closer to me. A focused future is exciting, making every day more meaningful.
Perhaps most important, my life has never been “settled” or routine. There is no reason to begin now. Every day is an adventure and an opportunity.
Photo Credit: (c) 2014 Mark Pouley
The orchards are blooming again in Washington State. To keep the trees healthy and productive, farmers must constantly prune the trees back, removing old limbs. As the blooms turn to fruit, workers thin the fruit, removing some fruit from the tree so the remainder has more room to grow.
Taking a look back at everything that has happened, the ups and the downs, in the two years since I was diagnosed with multiple myeloma.
It’s been two years since my multiple myeloma diagnosis and the beginning of this journey. So much has happened since then.
When you watch events day-to-day, it’s easy to miss their significance – even in the case of big events. Given more perspective, however, the challenges and changes become more clear, and I now recognize the many new beginnings I’ve encountered in my myeloma life.
I’ve already written about the challenging months following my initial diagnosis, when I faced debilitating fear and anxiety. I don’t know if time will ever make those feelings fade completely, but I’ve moved well beyond the weight I felt with the news. I can’t identify a specific turning point when the haze of the diagnosis was lifted, because it primarily came with time and education.
While the fear subsided gradually, starting treatment in November 2015 was an event – a new beginning – that dramatically altered the journey for me. I was finally “doing something” about the threat I faced. I was empowered to wrest control of my life away from the cancer that seemed to take control a few months early.
Even though that initial treatment was not as successful as we all wished, I didn’t feel fear as much as I felt encouraged to explore my options. I innately knew we would find a successful treatment. This was the end of my days as a passive and fearful patient just waiting on the unknown. I truly felt like I was actively attacking the cancer.
My stem cell birthday on July 22, 2016 was another new beginning for me. A big one.
Up to that point, I never really felt I was sick, even while I was going through my induction therapies. That is one of the odd things about multiple myeloma for me; I’ve never felt ill in any way from the disease. I’ve also only experienced mild side effects from the treatments. If anything, the diagnosis created a “mental health” challenge for me coming to grips with what was happening.
The transplant moved me to a new place. The daily blood draws and clinic visits, intended to immediately alert us to the first signs of infection or other ailments, made me feel vulnerable. Reporting to nurses and doctors everything that went into my body, and what came out, was sometimes embarrassing. The loss of appetite, constant fatigue, and drastic restrictions on my life made me feel disabled. While I was extremely lucky to avoid severe side effects during this time, and I responded well to the treatment, my transplant moved me to a new category of patient and it all became very real for me.
As I recovered, I decided I wanted to be more involved with the multiple myeloma community. Following my transplant, and the fulfillment I experienced documenting my treatment in The Beacon forum, I decided to try my hand at writing a column. I have a story to share, I enjoy writing, and I wanted to give back to the community that helped me survive. The experience of writing has encouraged me to get involved in other ways. This new beginning has moved me beyond a personal journey with myeloma to addressing a community cause. I will always be a patient, but for now I feel I’ve left the restraints of the clinic.
At this point in my journey, I’ll be receiving maintenance treatments indefinitely. My labs are generally normal, and the multiple myeloma is well at bay. Unlike the earlier treatments that aimed to kill off as much of the cancer as possible, maintenance is intended to preserve the status quo. This is a bit odd, in that I will undergo a lot to simply see no change in my health. But I recognize it signals my newest beginning – the start of what I hope will be a very long stretch of my life with myeloma.
My family has been season-ticket holders for the Seattle Sounders FC soccer team since its inaugural game in 2009. Going to the Sounders’ matches from March to October every year is a major family activity. As season-ticket holders, we’ve enjoyed the same seats every season, and we’ve grown very close to several people who sit around us.
Unfortunately, the restrictions of my stem cell transplant robbed this activity from us last year. The last live match I attended pre-transplant was in July. I was unable to attend the remainder of the season, which the team capped by capturing the league championship. I watched all the matches on television, but I really missed being part of the crowd. Last month, the Sounders opened their 2017 home stand, and I returned to my seat. After the match, my wife and I both experienced an unexpected feeling of accomplishment.
Looking back two years, I’ve never really felt my life was threatened. Each day was unique, and we just did what we needed to get to the next. We attended the appointments and meetings that were scheduled. We sat patiently for the blood draws and treatment infusions. We cleaned the house, prepared our meals, and followed the instructions to help me avoid getting ill.
While we understood that multiple myeloma was a killer, I don’t think we ever really felt threatened. But on the day we returned to our familiar stadium seats and cheered our favorite team, I think we realized what we had done. The malignant cells in my body are nearly immeasurable. I avoided serious complications. I’m generally very healthy and active. Our lives are returning to a new normal, and that includes returning to important and meaningful experiences we had lost for a time.
Two years ago, everything about multiple myeloma was a frightening mystery. Since the day of my diagnosis, I’ve stepped through changes and challenges.
Today I truly feel I’ve started anew. I’m ready to go wherever this road takes me next.
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Photo Credit: (c) 2014 Mark Pouley
April brings us the annual Skagit Valley Tulip Festival and our yearly reminder of spring and nature’s new beginnings. Hundreds of thousands of visitors to the valley arrive to take in the beauty of the flowers. The spectacle also offers endless opportunities for photographers. This image is a favorite I call “Early Bloom” because it was early in the season and these buds are just preparing to open to their full glory.
Bruce Springsteen’s music is the soundtrack of my life. I saw him live March 2016, just before my stem cell transplant. As usual, the Boss shared a meaningful message about life and doing something meaningful before it ends.
“Is there anyone alive out there?”
The call from the darkened stage is met with a cheer from the crowd.
The call is repeated with greater passion, “Is there anyone really alive out there?”
A thunderous roar erupts, the stage lights rise, and Bruce Springsteen lifts a hand to greet the assembled masses.
While Bruce’s customary concert rallying cry energizes his fans, it is also a promise to be fulfilled that night. A Springsteen concert is part rock show, part revival meeting, part philosophy class, and always a shot of adrenaline. Live or recorded, his music is a lesson in what it means to be alive.
Sky of blackness and sorrow (a dream of life) Sky of love, sky of tears (a dream of life) Sky of glory and sadness (a dream of life) Sky of mercy, sky of fear (a dream of life) Sky of memory and shadow (a dream of life) Your burnin’ wind fills my arms tonight Sky of longing and emptiness (a dream of life) Sky of fullness, sky of blessed life
Come on up for the rising
Come on up, lay your hands in mine
Come on up for the rising
Come on up for the rising tonight
These are lyrics from Bruce Springsteen’s song “The Rising.” The song was recorded following the tragedy of September 11, 2001. It relates the feelings of sadness being overcome by great hope.
I was lucky enough to hear Bruce perform the song live in 2002, bringing many of the audience to tears. At a time when our nation was still in pain, Bruce’s music was there to move us beyond the despair.
In 2002 Bruce spoke to the nation like he has spoken to me all of my life. As is true for so many other fans, Bruce wrote the soundtrack of my life. For every big event, every up and every down in my life, there is a Springsteen song I associate with that time.
During this new phase of my life, my life with multiple myeloma, he is here again.
In 2016 Bruce’s live tour included a complete performance of his 1980 double-album “The River.” It was released the year I graduated from high school, started college, and met my future bride. The songs on this record elicit strong memories for me.
“The River” is unique because it includes every type of Springsteen’s music. As Bruce describes it, the record is as big as life, and contains fun, jokes, dancing, laughter, good friendship, love and faith, lonely nights, and, of course, teardrops. His songs touch the full gamut of life, all the good and the bad.
When the tour was announced in December 2015, it looked like I was going to have to miss it. Initially he didn’t announce a Seattle concert, and the closest show for me would have been in Oakland in March 2016. A true fan would have figured out how to get to Oakland from Seattle.
However, the real problem was that it looked like I would be somewhere in the process of an autologous stem cell transplant at that time. I felt sad that my condition, and scheduling, would prevent me from attending the show. As Bruce and I both get older, it isn’t clear how many more chances there will be for me to attend one of his shows.
It was also about this same time that I stopped responding to the Revlimid (lenalidomide), Velcade (bortezomib), and dexamethasone treatments that I’d started in November 2015. This was definitely a low point for me, but things turned around in January.
I started on Kyprolis (carfilzomib), Pomalyst (pomalidomide), and dex and had a good response, so good that my doctor decided to extend the treatment and push my stem cell transplant to June.
Days later, Bruce announced a March 24 appearance in Seattle. The fates aligned. I was responding well to the new treatment and I was going to see The Boss.
During the show, I felt happy, sad, thoughtful, hopeful, inspired, and alive.
At the conclusion of the roller coaster of emotions ushered in by the 20-song performance, Bruce summarized his work this way:
“One of the things ‘The River’ was about was time, time slipping away. And how once you enter the adult life, you chose your work, you chose your partner. The clock starts ticking. And you walk alongside not only the people that you’ve chosen to live your life with, but you walk alongside your own mortality. And you realize you have a limited amount of time to do your work, to raise your family, and to try and do something good. Try and do something good.”
I felt as though Bruce was talking directly to me that night. How many times since my diagnosis a year earlier had I contemplated my mortality? What have I accomplished in my life? What regrets do I have? Could I have done more? Do I have time to finish what I’ve started?
How many times before my diagnosis did I think, “Oh well, today may slip away, but there is always tomorrow.” It shouldn’t take a cancer diagnosis, or a rock-and-roll show, to remind us that our time is finite. We owe it to ourselves to make something of every moment.
While some people might hear the negative in Springsteen’s remarks, in the context of all his music, I believe it is hopeful. Springsteen’s music encapsulates all of life’s balances. Loss balanced by love. Challenge balanced by opportunity. Sadness balanced by unbridled joy. Life is full, but bounded by time. Every moment is valuable and part of the next.
But living well doesn’t have to be so deep.
Bruce closed his nearly four-hour show with a rousing, get-out-of-your-seat cover of the Isley Brother’s party tune “Shout.” Even after standing all night, my bones didn’t ache, I wasn’t tired, I wasn’t thinking about my chemo treatment the next day.
That night in Seattle, Bruce reminded me how important it is to let go and to dance and sing because it feels so good.
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Photo Credit: (c) 2013 Mark Pouley
Like the lyrics from “The Rising,” the sky above North Twin Lake is a beautiful reminder of the balances of life. Moments after a torrential downpour and lightning storm, the winds calm and the sunset breaks through the clouds.
I was lucky in that I avoided many of the complications of a stem cell transplant that many patients suffer. Beyond luck, I think there are things my caregiver and I did before and during the process that contributed to my success. I share some of the lessons I learned in the process.
I received an autologous stem cell transplant in July 2016. I chronicled the day-to-day progress of my transplant so I won’t repeat that account here. Instead, I’ll share some of my general thoughts and feelings about the process.
My stem cell transplant was performed outpatient, but because we live over an hour away from the clinic, we relocated to apartments reserved for transplant patients. While I didn’t like being away from home, this arrangement was a nice balance. It was better than being confined to a hospital room, but we were in a controlled environment conveniently located for my daily blood draws and consultations with the medical team.
Before the actual treatment, I completed three weeks of tests and meetings. The tests were to make sure I was ready to endure the transplant, and the meetings were to prepare me to do the things necessary to recover. This schedule was physically and mentally exhausting because of the number of appointments crammed into a short period.
Once I was cleared to move forward, I received Neupogen (filgrastim) injections twice a day for a week to mobilize stem cells so they could be harvested from my peripheral blood. As expected, the drug caused aches and bone pain, mostly in my hips. I took daily doses of Claritin (loratadine) to deal with the pain, but I only found true relief after the stem cells had been harvested from my body.
Eight days after my stem cell harvest, I started the actual stem cell transplant process. First, I received a high dose of the chemotherapy drug melphalan (Alkeran). The drug infusion was uneventful, but the preventative measures practiced were torturous.
One of the known, and significant, side effects of melphalan is that it can cause sores in the mouth and the rest of one’s digestive tract. These sores can be painful enough to prevent eating. To avoid this, I was instructed to hold ice chips in my mouth for six hours (the infusion took about four hours). By the end of the day, the accumulation of IV hydration and melted ice made me feel bloated and sick. I still don’t want to see an ice chip today. I didn’t, however, suffer a single mouth sour. So, as horrible as it was, I recommend the process to all transplant patients.
After taking a day’s break, my previously harvested stem cells were reintroduced to my body. Despite receiving several preventative medications, the preservatives the cells are stored in caused nausea and vomiting. Happy (second) birthday to me.
I consider myself very lucky in that my recovery from the transplant was relatively easy and uneventful. During the first 30 days, I slept a lot. Other than that, I experienced rather mild gastrointestinal issues, and I only received one transfusion of platelets. I was never hospitalized, I never ran a fever, and I never experienced any emergent problems. Going in, my “best case” expectation was for something like a two-week flu. It wasn’t even close to that bad.
I know my experience may not be the norm, and I don’t want to diminish the difficulty others endured. I can only share my story, and it simply wasn’t that difficult. I’ve said I was “lucky,” but I believe I learned some lessons that may help others avoid some of the negative effects of a transplant.
I had a great caregiver. I owe a huge debt to my wife. She is my caregiver and spends extraordinary energy keeping me healthy. Following the transplant, she continually and thoroughly cleaned and sanitized everything I could contact. Bathroom and bedroom linens were changed daily. Food was prepared and served with the utmost care. The information we received in the classes seemed somewhat overboard, but we followed the instructions carefully and I remained in good health. It could be coincidence, but I doubt it.
My medical team was proactive. Instead of reacting to conditions as they appeared, they acted to prevent those conditions from ever developing. I was given supplements and hydration not because my numbers reached alarming levels, but because the doctors know from experience it is easier to keep the numbers safe than it is to recover from them after they fall.
I listened to my body, but pushed as hard as I could. I rested – frequently. I also walked every day, even if I didn’t really feel like it. The most surprising thing to me after getting home was how weak I had become. I can’t imagine the condition I’d be in if I didn’t stay active during the transplant.
I ate. When I didn’t feel like eating, I grazed through the day to make sure I got some nutrition. I drank when I really didn’t want to drink, but I carefully tracked my hydration and made sure I reached my daily goals.
I considered my recovery my summer job, and I worked hard to make sure I was successful.
I continued to follow the rules, even when I thought I was outside the window of risk. I was sent home on Day 28 after my transplant, and I couldn’t have been happier, but going to familiar surroundings created temptation to ease up on the cleaning and diet restrictions. I did my best to resist that temptation.
During the months leading up to my transplant, I felt scared of the procedure that loomed ominously on the horizon. Nearly six months post transplant, the details of the treatment are becoming vague memories, and the transplant is in the rearview mirror of what I hope is a very, very long journey.
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Photo Credit: (c) 2016 Mark Pouley
Before my wife and I started the hard work of the transplant, we were able to spend a couple days at our favorite lake to relax and prepare. I spent a quiet morning on the lake in my kayak and captured this photo.
I kept a journal of my stem cell transplant from the day they started collecting my stem cells to the day six months post transplant.
I underwent an autologous stem cell transplant (ASCT) in the summer of 2016. I kept a journal to chronicle the experience. I started my journal on June 21, 2016, the day I officially checked in with the clinic. My last journal post was on January 17, 2017, one hundred and eighty days after my stem cells were transplanted into my system.
June 21, 2016
Today I check in with the Seattle Cancer Care Alliance (SCCA) transplant team. This is day one of a battery of tests and meetings in preparation for an autologous stem cell transplant. Blood tests start today, a bone marrow biopsy on Thursday, and a plethora of other tests and consultations.
The preliminary schedule has a central line going in July 6. Because I’ve had 9 cycles of induction therapy (including 4 cycles of Revlimid and 5 of Pomalyst) and my M-spike plateaued at about 0.5 g/dL (5 g/L), I’m prepared for a combination of chemo and growth factor medications for mobilization in early July. My actual transplant date is targeted for about August 10.
As I learned today, this is all preliminary depending on testing and my response.
Q (from a forum reader): Do you live close enough to be able to stay at home or will you have to relocate as we did for the time?
A: We live about an hour away and we will need to relocate. We hope to get an apartment in clinic housing, but rooms are limited. There are also a few hotel options. While I don’t want to impose on family, I also have siblings within a half hour if other options don’t work.
July 1, 2016
Last week I completed two weeks of rather grueling tests, classes, and meetings. It was exhausting, but I felt it was all necessary.
I’m sure I will forget something, but the appointments included:
A bone marrow biopsy, 3x blood draws (about 8 vials each), EKG, echo cardiogram, pulmonary testing, full body MRI, full skeletal x-rays, 2 dental visits, culture swabs, food safety classes, nutritionist consultation, pharmacy consultation, social worker meeting, and many doctors’ visits.
The good news is that the bone marrow biopsy showed only 3% involvement in the marrow (i.e., 3 percent bone marrow plasma cell percentage) and my other tests were very good. This led the team to decide we do not need the previously planned conditioning chemo and I can go straight to mobilization of the stem cells.
I’ll get a final treatment plan on Tuesday and placement of the central line. Growth factor injections should start on Friday and harvesting could start as soon as Monday the July 11th. That might put the transplant into the week of July18th.
I’m happy to hear the good test results and the shortening of the schedule.
July 5, 2016
Today I had my data evaluation meeting with the transplant doctor. He confirmed that all of my tests were very good and we will move directly to mobilization of stem cells. I had my Hickman central line inserted today. My first Neupogen injection will be Friday morning (I’m still waiting to learn if my insurance company will let me do injections at home). Harvesting starts on Monday July 11. Depending on how well harvesting goes, it looks like the week of July 18 for the transplant.
The central line procedure itself was not bad. I was given “conscious sedation” I believe they called it “awake, but drugged enough to avoid any anxiety and no pain at all.” I’m sore tonight, but it is much too early to pass judgement on the line.
July 10, 2016
I’ve been receiving Neupogen injections twice a day since Friday. On the advice of folks on the forum and my own nurses, I took Claritan daily. I’ve experienced some pain and stiffness in my lower back and hips. At its worst, in the evenings, it is a dull throbbing ache that seems to be in time with my heart beat. I’ve also felt a bit sluggish (hard to pin down). I was told some people describe it as “flu like” symptoms and that seems accurate as far as the general achiness. It’s not terrible, but noticeable.
I begin harvesting cells tomorrow. SCCA wants to collect enough for two transplants, so about 10 million cells. The goal is to do it in one day, but I’m prepared that it may take two or three. I’m told I may get relief from the achiness since we’ll be making room in the bones again
July 11, 2016
We harvested 5.9 million of the goal of 10 million stem cells today. We will return to work tomorrow morning. The good news is that I have enough for a single transplant and I’ve avoided the extra- strength mobilizing drugs I’ve heard so much about.
The collection process for me was very uneventful. We were on the apheresis machine from about 8:30 a.m. to 1:15 p.m. I experienced no pain or other issues, except I did get hot the last half hour or so. That is because my blood was warmed before being returned to my body. I also had to take a couple of pills to keep my potassium level up. I believe my platelets and red cells stayed high enough that we can get to work right away tomorrow, but they will take labs first to be sure
July 14, 2016
We collected 7.4 million cells on the second day of harvesting. I’m happy we have plenty of cells to move forward.
I’m scheduled for chemo on Wednesday July 20 and infusion of my cells on July 22.
My team would like me to begin taking Zometa, so I’m scheduled for my first infusion today. I have mixed feelings about this only because my regular oncologist hasn’t made this recommendation before.
July 20, 2016
Today I received my high dose melphalan. The chemo infusion was all of 15 minutes, but there was about 5 hours of hydration before and after. It was a long and fairly boring day. The hardest part may have been eating ice chips the entire time. Between the ice and the hydration I needed a few trips to the rest room. We broke up the monotony of ice with fruit popsicles, and apple juice and sport drink my wife froze in ice cube trays.
As of several hours later I’m exhausted. I’ve avoided nausea so far (knock wood). Unfortunately, my creatinine was slightly elevated, so they will infuse fluids tomorrow (so much for a day of rest).
July 21, 2016
I went to the clinic to have labs drawn, to check in, and to receive IV fluids. I’ve vomited without warning twice today. I hope this is not a sign of what is to come in the next few days and weeks. This is the first time I’ve really felt like I’m a chemotherapy patient, or at least what one expects to feel like.
July 22, 2016 = Day 0
Today was the big day, I’m told it’s my second birthday. It was a long day in bed, mostly getting hydration before and after the infusion of the stem cells. The clinic infused 3 bags of cells (probably about 6.5 million cells, but I didn’t ask).
Yesterday on my “day off” I was generally doing well, but did have my first bout of vomiting (without nausea, it just hit me almost instantly). Even so, I was able to get out and walk a few blocks to get some fresh air and exercise. Apparently the preservative the cells are in can cause nausea. It was suggested I cut an orange and sniff it during the induction. Well, during the first bag of cells, nausea won, but I was good the rest of the time.
It feels great to have this part of the journey complete. I know the short road ahead may be full of surprises, but I’m going to keep a positive attitude and get the other side.
The medical technician delivers a bag of my previously harvested stem cells for infusion.
I’m feeling well this morning. I’ve been able to eat light meals and keep drinking. I seem to have the nausea under control now that I’m taking meds on a schedule as opposed to “as needed” since I wasn’t getting any warning.
I’m continuing on IV fluids this weekend, but they set us up to do it at the apartment with a portable pump. This is much better than lying in the clinic bed for 4-5 hours. I’ve also been able to get out and walk a bit.
I know my numbers are still coming down and I expect it will get worse before it gets better, but right now I’m doing ok considering I’m working on a reboot of my entire system.
Today is one week out from my high-dose melphalan. My blood counts continue to dip and yesterday showed I have become neutropenic. The doctor started me on antibiotics. I’m still getting a liter of IV fluids daily, but I’m able to do that at home. I’m still feeling generally ok, but extremely tired. Last night the expected diarrhea arrived. I have been able to eat small meals and drink fluids. I find not letting my stomach feel empty is best way to avoid nausea.
It’s early this morning and I have a blood draw and doctor visit ahead to see what today’s adventure will be.
I think the most interesting part of this trip for me so far is expecting symptoms and other “bad things” (low blood counts, bodily functions) to happen, know that it is “normal,” and be somewhat relived that it is happening. If the treatment goes as expected, you hit the lows and then start recovering. The lows become a marking point of progress.
“Remarkably well” were the words describing my recovery from the physician’s assistant today. I’ll take that!
I’m still extremely tired. I seem to have the nausea under control. I don’t have a great appetite, but I’ve been able to eat small portions, and graze a bit during the day. I’ve only lost about half a pound. I’m still receiving 1 liter of IV fluids daily at home.
All of my numbers indicate I’m staying well hydrated and have good kidney function, but the team seems set on keeping the extra hydration going. I’m generally able to drink about 2 liters a day, but it’s challenging. Water tastes bitter, and frankly it is mentally exhausting to keep forcing myself to drink when I don’t really feel like it.
I’ve had diarrhea for a couple days, but stool cultures show I have no infection, so I can begin taking Imodium (loperamide) to get some relief.
I feel very lucky to have so far (knock wood) avoided some of the severe effects I was prepared for.
We read a lot about the physical side effects, but I also would comment on the mental effects. I’m exhausted; paying attention to so much information, reporting daily about what goes into and out of my body, waiting for reports and getting to appointments. The monotony of having limited freedom and living in an unfamiliar location is draining. Yesterday I just felt really rattled. I’m trying to focus on each day, knowing that I just need to work through that day. If it is a good day (and generally they have been)I need to enjoy it.
My progress continues along well. We keep telling the nurses we are striving to be the most boring patients in the transplant department.
I’ve produced a small number of white blood cells three days in a row. I take that as a good sign of progress. My platelets keep dipping and I’ve been penciled in for a transfusion the last two days, but so far I haven’t dipped low enough to require that.
This morning’s big surprise was a wash cloth full of hair when I was cleaning up. I didn’t really think I would avoid hair loss, but it was still a little disappointing to see it has started to fall out.
My appetite is still pretty light, but I’ve been able to eat little bits all day. I find “grazing” is the best way to keep a little something on my stomach and avoid nausea.
I’m still doing well, but my platelet count finally dropped to the point that I need an infusion. I had to come to the clinic to receive one unit of platelets. Luckily this is a pretty uneventful process, just more time in bed while the platelets are added to my system.
Celebration. I produced neutrophils. I was at zero for about 3 days, but today showed my first little bump upward. Obviously I’m still neutropenic, but this is such welcome news. Hopefully everything just keeps going up.
My appetite has been pretty light, but I’ve only lost 2 pounds. We’ve stuck with pretty soft and pretty bland foods. Today was a bit of a watershed again when I had a small slice of ham with my eggs for dinner. Ham is one of my favorite foods and it was a real treat to eat it tonight.
I’m still very, very tired and sleeping a lot. I hope I start seeing some energy soon. But I won’t rush things. I feel so lucky to have made it to Day 12 so easily, I won’t rush things.
I had this day marked on my calendar from the beginning since it seems like a pretty standard milepost. It’s been a good day, but getting here wasn’t easy.
Yesterday I had some rough GI issues in the morning and evening. It actually was one of my hardest days.
Today I am MUCH better and there are signs my GI tract may be working its way back to normal. The big news is that I’m no longer neutropenic. I hit 580 neutrophils. Depending on my math, that means I was neutropenic 11 days. I’m sure based on this, and the other numbers slowing working their way up, the physician’s assistant said I am engrafting.
I’m still doing home IV fluids with potassium. This really seems like the clinic’s common practice. They will be cutting the dose in half (from 1 liter to ½ liter on Sunday)
On a lighter note, here in Seattle it is SeaFair weekend (hydroplane races, parades, etc). Each year the Blue Angels come to town and perform during the boat races. They practice several days before and today I got to go to our rooftop garden and watch them practice. This isn’t something I’d get to see if I were home. (Always looking for the silver lining.)
Yesterday I really felt like I turned a corner. Everything just started feeling much better. It helped that my wife and I celebrated our 34th wedding anniversary at my brother’s house visiting some of our kids. It was a very nice day.
Today’s blood tests show steady increase in all of my blood counts. I’ve been pulled off the anti-fungal medication and antibiotics I’ve been taking. My GI seems to be getting much closer to normal. The best news came after my morning clinic. We got an email that said my schedule was cut back to only two blood draws and clinics per week. Wednesday and Thursday of this week will be the first days “off” since July 17. Yay!
It’s been another very good week. I checked in with the clinic Tuesday and had the rest of the week off until this morning. I felt better each day. My appetite is getting better (I had a great meal Thursday night), and my GI and other functions seem to be getting much closer to normal. I’ve tapered off the anti-nausea meds.
All of the blood counts increased this week except neutrophils which plateaued a bit at 680. The clinic said they see this at times with patients and they are not concerned, especially since all my other numbers, including white count, are moving well and are closer to normal.
The IV fluids were stopped on Tuesday. They encouraged me to drink more, which I was able to do, and they are happy with my hydration and electrolytes today. They also dropped the potassium supplement today (yay, it’s a horse pill).
My next clinic visit isn’t until Wednesday when I have an exit consult with my doctor. I’m scheduled to have the central line pulled on Friday and then HOME.
I can’t tell you how excited I am to see the light at the end of the tunnel. I know I have a good deal of recovery to go, but it is going to be so nice to do that in my home.
I met with my doctor today. I don’t know what else to say – we were cleared to go home and I couldn’t get there fast enough. Best. Nap. Ever. In my own bed.
Actually, I don’t have much else to report. Since last Friday, I get better each day. My appetite and GI are maybe 75%. I’m still fatigued a great deal, but better each day. Friday I developed a minor fungal infection. I was given a powder to deal with it. Today, after talking to the doctor, he didn’t seem surprised or worried about it. It is clearing up without much trouble.
I will get a blood panel Friday to see how well I’m at producing cells. My Hickman line gets removed Friday. Thank goodness (hot shower scheduled Saturday)
I will be released from the transplant unit and returned to my myeloma doctor next week. Ironically, my myleoma doctor rotated into the transplant team last week, so I also saw him today. He was very happy with the pre-transplant biopsy. I misreported the results here saying there was 3% cancer. In fact, it was 3% plasma overall and 0.11% abnormal cells (he said that number is always underestimated, but it is still a small fractional number)
Thankfully my central line was removed today. It was very uneventful. I’m looking forward to a long hot shower tomorrow.
My blood counts continue to climb, but are still not “normal.” Of note, my neutrophils (ANC) are back to the normal minimum. My hematocrit is still a bit below normal, but getting so close.
Feeling as well as I do, and being home, the hardest thing to do is remember I need to take it easy and be careful. I want to do everything I did before, but I can’t. Soon.
Today I met with my regular hematologist, nurse practitioner, and nurse. It was great to get back with the team I felt so comfortable with (the transplant team was great too, but this is the team that’s been fighting myeloma with me for a year).
My blood tests look great. Both my white and red blood counts are just a fraction below the “normal minimum” My hematocrit is 40 and above the average minimum. In fact, that is as high as it has been since July 2015. My neutrophils (ANC) are 2.05 and “normal”. My platelets are at 160, above the average minimum. I’m feeling better every day.
As I’ve said before, I’m considered a “high risk” patient because of my del(17p) abnormality. Because of this, my doctor wants to take an aggressive approach to maintenance, regardless of my level of response following the transplant. This means starting maintenance before the 90-100 day post-transplant, probably day 45, and administering Pomalyst, Kyprolis, and dex again. The doses will be adjusted to accommodate my tolerance and to give me a small break on the schedule. I will also have a port installed tomorrow to ease all the blood draws and infusions.
Mentally I’m doing well and celebrating how well I did in the transplant. I know other myeloma patients will relate to the nagging gremlin in the back of my head; “I’m not ‘done’ and I won’t ever be ‘done.'” It isn’t a strong emotion, but it is there and now that I’ve moved past the transplant I see that I’m at a different point of my new normal and I need to deal with this.
I’m still doing really well. About the only lingering effects of my stem cell transplant are my continued lack of energy (but that has improved a lot) and my very thin hair (I was lucky in that it came out fairly evenly, so now I just look like I have a close crop).
My Tuesday blood tests were still very good. Only my red cell count is still a fraction below the normal minimum. Everything else looks great.
The best news; I have more then a week between doctor’s visits, giving me the opportunity to come to the lake to rest and recover. This has been the best medicine yet.
I don’t have enough energy to make it across the lake, but this felt GREAT for Day 44.
My first post-transplant kayak run on the North Twin Lake.
All is well and progress continues.
I started maintenance therapy last week with my first dose of Kyprolis, Pomalyst, and dexamethasone. I’m currently receiving half the dose that I received prior to my stem cell transplant. I’m going in for Kyprolis 1 day per week (instead of two), 3 weeks in a row with one week off. Today was dose two of this first cycle. The current plan is to follow this regimen for at least a year.
So far so good. I’m handling the treatment as well (or better) than I did before the transplant. That is, I really don’t notice any side effects. Dex makes it tough to get to sleep, but it doesn’t keep me up all night. I’m feeling a bit tired, but I’m still getting my energy back from the transplant, I’ve been waking up at 3:00 and staying awake about 30 minutes (my pre-multiple myeloma normal) and my wife started back to work this week so our alarm goes off at 6. It’s hard to pin down why I’m tired.
I have a bone marrow biopsy scheduled for October 21. That will probably be the first time we evaluate how well we did against this stinking disease. I’m planning to ease back into work the first week of October. I have the luxury to really play with my schedule and listen to my body. October 22 is my granddaughter’s first birthday, and my clearance day to start eating real food again. I think I have a date with a big cold cut sandwich.
Today I returned to work for the first time since mid-June. It is just lunchtime as I write this. While I’ve been very productive, I’m feeling very tired. I miss nap time. I have the luxury to ease back in. Everyone at work is very understanding and concerned for my well being. All in all, it feels like a huge accomplishment to be here.
Today is a major milepost and sign of the next stage of my journey.
I completed a full skeletal x-ray, bone marrow biopsy and the first labs in over 90 days to measure free light chains and protein markers. I have reasonable confidence the news will be good next week when I have complete results.
The best news for the day is that nearly all dietary restrictions have been lifted and I can start eating more of what I enjoy. I’ve started my mental list – mostly restaurants and take-out – but a delicious cold cut sandwich from a favorite sub shop is first. It’s funny the things you find out you miss most.
The word for today is “perspective.” I know I can share my true thoughts with the Beacon forum because you understand the science of multiple myeloma and the emotional confusion it sometimes puts us through.
I spoke to my doctor today about the results of my bone marrow biopsy and blood tests. I think for most people I talk to I’ll say “The transplant was very successful and the doctors are really happy with my response. We will continue my current maintenance treatment to make sure we solidify the results”. That is one perspective and the easiest to understand.
My blood test showed an M-spike of 0.3 g/dl (I was 4.9 before any treatment and 0.6 pre transplant). My bone marrow biopsy was even better. They could not conclusively identify any cancer, but found 0.001% of white blood cells to be abnormal. Put another way, not definitively zero. Another perspective.
As I said, the doctors are really pleased with the result. There was no result that we expected that would have changed our current treatment plans. Most importantly, I’m feeling very good and gradually going back to work. Admittedly, part of me is struggling with not achieving a “complete response”, but it’s a label. The statistics might move a bit, but my future remains as uncertain as it was a week ago. My present remains unchanged. It’s all perspective
I learned a lesson about the the new “normal” on Day +129. All day I felt a bit more fatigued than normal and just kind of “blah”. By 6 p.m. I noticed I was running a fever of 99.7 F (37.6 C). An hour later it was 99.9 F (37.7 C) and by 9:20 I hit the magic number of 100.9 F (38.3 C). Magic because that is the point my doctors say I MUST call in. I did and was directed to the ER associated with the cancer clinic because they have my records. That meant an hour drive to the ER. We got there about 10:30 p.m.
Of course, by the time we arrived, my fever had broken and it was back to normal. Still, I underwent a battery of labs and a chest x-ray to be sure there wasn’t something that needed immediate attention.
There wasn’t, I was sent home at 3 a.m.
I’m happy it turned out to be nothing (maybe a virus they say), and I know others here have had much worse experiences in their recovery. Still, this was my first time reacting to the new requirements of my health condition, and it wasn’t very fun.
January 18, 2017: Day +180
It is hard to believe I’m 6 months post transplant. Sometimes it seems like yesterday, other times it feels like it didn’t really happen.
I started aggressive maintenance therapy in September 2016 and I’ve completed 5 cycles since then. I’m currently receiving a “half-dose” of Kyprolis, Pomalyst, and dexamethasone (KPD) as compared to the dose I received in initial induction. I’ve had very few issues with this, only some continued fatigue. We have actually seen a continued response to treatment. My post transplant biopsy showed a very small, nearly immeasurable, number of abnormal cells. My blood work, however, showed an M-spike of 0.3 g/dL (3 g/l). My last SPEP test on December 31 showed an M-spike of only 0.1 g/dL.
Since coming home I made one trip to the ER for an unexplained fever. The fever had broken by the time I was seen and I was sent home. I’ve been basically healthy at all other times.
I was weak when I returned home and I’m still not back to my pre-transplant condition. Not that that condition was optimal. I’m working hard to exercise regularly and eat better. Last week I started seeing a physical therapist at my cancer center so that I can begin incorporating exercises that will account for my back issues and other bone issues (none too serious, but I don’t want to risk injury).
It’s flu season and I’ve been very careful about avoiding sick people at home and work. Since I’ve been doing this a while, it is starting to feel like habit, and I’m not having to think so hard about it anymore. I’m sure I could afford to be more careful, but I think I’m being prudent most of the time.
Passing 6 months I’m now able to go to “water zumba” with my wife at our local health club. I did that on Monday and it was great to be back. I like the water exercise because it is so low impact and still a good work out. I’m one of the only men there, but I’m ok with that.
One final note, my hair has completely returned. Where once I had thin and very straight hair, I now have full curly hair. I don’t know if this will last, but I’m taking advantage of it for now. I didn’t let my hair stylist cut it off last week so I can see how curly it will get.
Overall, I feel great and hope this new phase lasts a very long time.