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.
The first holiday season after my stem cell transplant offered me many reasons to be thankful, and many people to share my gratitude with.
We are in the holiday season and I recently enjoyed our annual prompt to be thankful for all the joys in our life. As a multiple myeloma patient, it’s a good reminder for me to appreciate all the people that help me fight this disease.
I discovered with my diagnosis that it’s easy to become self-centered. What is happening to my body? What treatments do I need? When are my appointments? How does my health impact my schedule and obligations? For the most part, I think this is understandable, natural, and unavoidable. Even before multiple myeloma entered my life, I sometimes forgot to consider how my words and deeds affected others, and sometimes I forgot the simple act of saying “Thank you.” Now that I owe so many so much, I hope I can correct this oversight.
I’ve described how shocking my multiple myeloma diagnosis was to me. I honestly don’t know how my wife, family, and close friends felt when they heard the news. Did I ever really consider their feelings as I processed my own? How difficult was it for them to keep their emotions in check for fear of upsetting me? I don’t think I completely considered how hard it was for them when anxiety and depression overwhelmed me and disconnected me from my work and my family. I know I wasn’t always there for them to be the husband, father, and colleague that I should have been.
Almost immediately after my diagnosis, many of my responsibilities shifted to my wife and family. Because I couldn’t lift anything and I had to avoid exposure to everything that might cause an infection, I could no longer perform so many chores that were once ordinary. One by one, my family had to pick up my slack. Individually the tasks were minor, but cumulatively, our lives changed. The restrictions only grew over time.
Before and after my autologous stem cell transplant, the work load for my wife grew exponentially. She cleaned every inch of our living space, washed linens, and sanitized our bathroom and kitchen daily. She quickly learned nursing skills, flushing my central line, changing my dressings, and offering me a cold cloth when the drugs and my gastrointestinal system didn’t see eye-to-eye. Above all else, she was there for me always. I know this wasn’t an easy task.
I often felt guilty not helping more, and I tried to do what I could to chip in, but I fear it was too little to show how much I appreciated what was being done for me.
To my wife and children, I say “Thank you” for your hard work, support, and boundless love.
I have a great relationship with my brothers. It is marked by endless joking and laughter. When I told them I had multiple myeloma, they offered me strength and humor, sometimes dark, and it was always welcome. My brother and sister-in-law opened their home to me for a peaceful respite during my recovery from my transplant. My siblings are always reminding me I’m loved and part of a great family.
To my brothers, I say “Thank you” for a lifetime of smiles through thick and thin.
When I told work colleagues that I was ill, and that I would miss all of the summer, they understood. They stepped up and made sure that my work, and the people I serve, would not be left in the lurch. Many of them took on extra responsibility to cover for me, often sacrificing their own time or compensation to make sure I could give my full concentration to my recovery.
To my colleagues, I say “Thank you” for giving of yourselves so freely to continue our work.
I’m lucky to live near one of the nation’s leading cancer treatment centers. I have a better chance of beating this horrible disease because I have a gifted medical team working for me. They clearly possess great knowledge and experience that will help me. They also have great compassion, understanding the difficulty my family and I face fighting this cancer. During my visits, after we’ve discussed lab results and treatment options, we talk about life. We chat about what we are doing at home, what makes us happy, and the questions we have about the future. We joke, we laugh, and we remember there is life outside the clinic walls.
To my medical team, I say “Thank you” for treating all of my conditions, physical and mental, and remembering the humanity of your patients.
The Internet is remarkable. We literally have access to all knowledge of mankind at our fingertips. Of course, that isn’t always good, because a great deal of the information is inaccurate, hurtful, and wrong. I had never heard of multiple myeloma before my diagnosis, and turning to the Internet for answers was often more harmful than helpful. Then I discovered The Myeloma Beacon. Here I found accurate information about what was happening to me, the science of the disease, what treatments were available, and a realistic reason to be hopeful about my future. In the Beacon’s forums I found caring, polite, and informed participants whose only interest was to help fellow patients, caregivers, and family.
To the editors of The Myeloma Beacon, my fellow columnists, and the many participants in the Beacon’s forums, I say “Thank you” for providing hope and support to this community.
I will never be thankful this wicked disease invaded my body, but I am grateful to be reminded of the many compassionate, strong, and loving people in my life.
The shock of my diagnosis caused a lot of anxiety and I didn’t always respond in the best way. In particular, I lost my passion for photography. I hope to take that back from this horrid disease.
I live in the pacific northwest of the US and one of my life’s passions is photography. You can see my work, read about my activities as a photographer, and pick up a tip or two at my professional site www.twinlakesimages.com.
I started seriously shooting photographs in 2009. By 2011 I was printing the best of my work and showing it regularly in regional art shows, first for judged prizes and soon offering them for commercial sale. I developed my presence on the internet and actively sought representation in galleries in the Pacific Northwest. Granted, in that time I’ve only earned slightly more than my expenses, but I don’t consider profitability the only measure of success. While I’m not paying a lot of bills with professional photography, I have transitioned beyond a mere hobby.
Unfortunately, my myeloma diagnosis in 2015 significantly cut into my ability to promote my photography. Between the time lost to appointments and the precautions necessary to avoid infections, particularly as I got further into treatment and closer to my transplant, I was unable to interact with the public in the way I need to promote my art. Sadly, I also allowed myeloma to interfere with the act of creating my art, and there is no excuse for that.
My portfolio primarily includes nature and landscape photography. There are many reasons for this, but the simplest may be that I enjoy getting out by myself, often before others are out of bed, to take in the beauty of nature. We regularly spend vacations and long weekends at the Twin Lakes in northeast Washington and that is where I draw much of my inspiration. When I’m out shooting alone I’m able to absorb nature, examine the light, and concentrate on interesting compositions. My full attention is on my environment and the photograph I’m going to create. I don’t think about work or other issues that may be vying for my attention in the real world. Simply put, photography is very therapeutic.
Understanding this makes it all the more ironic that following my diagnosis I found it incredibly difficult to get out and shoot photographs on a consistent basis. I explained in my first column that the shock of the diagnosis, the fear and anxiety that I felt, paralyzed me and separated me from doing the things I loved. Photography was one of those things. I knew intellectually this was happening, my doctors and family encouraged me to reengage with my work, but I didn’t.
Up until my stem cell transplant there was no physical disability preventing me from getting out as often as I had before my diagnosis but I just didn’t feel motivated. I really can’t explain why I let myeloma deprive me from enjoying a great passion. I can only speak for myself, but I’m guessing other patients have found it difficult to engage in activities they enjoyed before myeloma impacted their lives. I think it may be natural to let such a dramatic change in one’s life deprive you of otherwise joyful things.
Unfortunately, recovery from my recent stem cell transplant still prevents me from having the kind of close contact with the public that promotion of my art requires, but I can return to producing my art. In fact, I have all the incentives I need. It is important for me to get out and walk and get some light exercise. Fresh air (clean air) is good for me. Quiet contemplation of nature is, as I said, therapeutic and helps me be more mindful of the beauty of each day I’ve been given. Maintaining good mental health and staying happy is one of my best tools to fight this disease. I have every reason in the world to regain my passion.
It’s not enough for me to say it, I must do it.
This cancer has taken so much from us already, we can’t let it deprive us of everything that makes us happy. There is so much in life I no longer control, but I have not lost control of my photography. I am determined to recapture my passion.
I took this photo of the sunrise breaking through a tree in May 2016 during the break between my induction therapy and my stem cell transplant. It was one of the few early mornings that I got up early and out to shoot photos like I have in the past. The image is a great reminder to me why I love doing this and how rewarding it can be.
A routine physical led to the shocking news that I have an incurable cancer, multiple myeloma. The news sent me down a very dark hole that I struggled to get out of. Time, knowledge, and counseling helped me escape the depression and move forward.
In March of 2015 I was your basic healthy 53 year-old man, but I figured it was time for a check up. I made an appointment with my doctor and he ran all the usual tests. I left that appointment with a clean bill of health and a recommendation to exercise more. Four days later my doctor called me. You know it isn’t good if your doctor calls. I remember his words distinctly. “Your lab tests show monoclonal gammopathy, which may be early multiple myeloma.” None of those words meant a thing to me, until he said it was a type of cancer and he referred me to a hematologist. I couldn’t have been more stunned.
That phone call kicked off a series of increasingly frightening and confusing doctor’s visits. On my first visit I learned the increased proteins could be nothing, but I may have something called MGUS. The doctor explained the condition and softened the blow by explaining the small likelihood of MGUS becoming myeloma. A few tests later and another visit to the doctor I was told I may have smoldering myeloma, which meant closer monitoring. I had progressed from, “don’t worry about it” to “don’t worry about it now.” Then I was referred to a myeloma specialist.
Luckily I live near Seattle, Washington where some of the world’s best myeloma specialists practice. I made an appointment, my records were transferred and I waited an agonizing two weeks.
My myeloma specialist was very direct about my test results and diagnosis. I definitely had multiple myeloma. There was nothing smoldering about it. He then asked, “Did your other doctor discuss your cytogenics with you?” The blank stare on my face told him I didn’t have a clue what cytogenics even meant. He explained I had an abnormality called “del17” which meant that I was a “high risk” patient.
Instead of watching and waiting, my previous treatment plan, he believed I’d begin treatment before the end of 2015. He also explained the science of myeloma in a way I hadn’t heard before. Not that relapse may happen, but that it most assuredly will happen. Then he spoke the words that seared into my brain. With my cytogenics my average survival was six to seven years. Did my doctor really just tell me I might not see my 60th birthday?
In less than a month I went from being totally healthy to learning I had a deadly and incurable form of cancer. The kicker is that I still didn’t feel sick at all.
Honestly, at this point I was a wreck. My wife was by my side for all the appointments and we shared the news with my adult children, but that was it. I couldn’t even tell my closest family and there was no way I was going to tell colleagues at work.
The secret knowledge ate at me, and I felt something I can only describe as shame. I was scared. Scared of dying and scared of living with the disease. I mourned the future I thought I’d lost. I felt jealous of people I thought would outlive me. While I did my best to stay productive at work, hiding my fear in the presence of colleagues, in the privacy of my office I often succumbed to paralyzing anxiety. I let thoughts of what might happen in the future deprive me of the present and separate me from the people I cared about.
I knew I couldn’t continue on this path. I sought help from my doctor and started seeing a counselor. My immediate family was my greatest support and I slowly started telling more family and close friends. When my colleagues learned about my condition they demonstrated great compassion. Instead of becoming “cancer guy” as I’d feared, I discovered a wealth of kindness and comfort. In fact, I found that my closest friends and family aided my recovery from fear and anxiety by refusing to treat me any differently than before.
When I was first diagnosed the Internet was a very scary source of information so I avoided it. My specialist pointed me to The Myeloma Beacon and I found an informative, reasoned and compassionate resource.
I’ll never forget the shock I felt leaving my specialist’s office after that first visit, but over time I’ve grown to have complete faith in him and the team. He is not locked into the statistics and he has great hope for my future. I learned about the amazing advances in myeloma treatment that I believe will keep me alive and kicking well beyond the previously stated expiration date.
With my willingness to share my experience with those close to me, and after learning more about the science of myeloma, I was able to accept the reality I’ve been handed. The fear hasn’t completely subsided, but the impact I let the fear have on my life has.
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Photo Credit: 2014 Mark Pouley.
This photograph of the North Fork of the Stillaguamish River was taken on March 21, 2014.
Less than 24 hours after I took the photo, a massive landslide destroyed a neighborhood a mile upstream from the location, killing 43 people in its path. The location was severely flooded, and the river flow was forever altered.
Almost exactly one year later, I received the phone call that set off my own personal landslide and forever altered my own personal path.