A Northwest Lens On Myeloma: Celebrating My New Birthday
Happy Birthday to me!
On July 22, 2016, the medical team at my transplant center infused my own stem cells back into my body. Only two days before, I received a massive and otherwise deadly dose of the chemotherapy drug melphalan. This was day one of my recovery from that treatment and, hopefully, an end to the myeloma cells that invaded my body.
I’m pleased to announce on this anniversary that all reports are positive.
It amazes me that it’s been a year since my autologous stem cell transplant. I can truly appreciate the saying “time flies.”
Prior to my transplant, I feared a long bout of serious illness and hospitalization. As it turns out, the side effects were mild, and I mostly slept my way to engraftment 14 days later.
When I returned home 30 days later, I felt well and I couldn’t wait for Day +90 when I could eat whatever I wanted. Driving home from the clinic that day, I stopped at a favorite sandwich shop and ordered a cold-cut sandwich I’d been craving.
During the last year, there have been other mile posts, like my post-transplant biopsy and SPEP blood test to see if the myeloma cells had disappeared. The day I could more safely enter a crowd and watch my favorite sports team play. The day I could enter a public pool and exercise with my wife. As markers were set, the calendar days whizzed by.
Now that my one year anniversary is here, I don’t have any new markers to set. I’m hoping time will slow down a bit so I can savor my health and my family. Everyone is hopeful this stage of the journey will be long and uninterrupted.
While it may have seemed that time rushed by, the changes in my body and my health were a bit more gradual.
When I started back to work part-time in October, a busy day exhausted me. Today, while I still work a reduced schedule, and I sometimes feel tired at the end of a busy day, it doesn’t seem much worse than before my treatment.
I’ve always enjoyed a good nap. These days, however, I often feel I need a nap. I don’t think it’s a bad thing, but I’ve accepted this as part of my routine most days.
When I returned home from the transplant, I discovered how much strength I’d lost. I’ve tried to get back into shape, but my fatigue and lifting restrictions make it difficult. Admittedly, I may be making some excuses, but I know my loss of strength was unavoidable and it is simply slow to return.
Fatigue and weakness make me feel older, but they are really the only constant reminders – other than regular trips to the clinic – that I have multiple myeloma.
For the last 25 years or so, my family has spent the last week of July and first week of August at North Twin Lake in the far northeast corner of Washington State. In 2016, on the day we would have normally been driving to our vacation, I was receiving my stem cells. Our schedule was interrupted last year.
As this anniversary approached, I was trying to decide how I should mark it. I didn’t really come up with anything clever, but we headed to the lake again this year. As soon as we arrived, I realized that this is the perfect way to celebrate my new lease on life.
Many of my photos are of the Twin Lakes area of Washington State. My images best depict the area where my words will fail. It is a very remote and nearly undisturbed part of the country.
In the morning, the lake is glass smooth. The area is home to the common loon (actually a rare animal), and the bird's call echoes across the water. Eagles and osprey glide above, suddenly diving to the surface to capture a fish for an early meal. Occasionally, a moose can be spotted getting a drink at the lake’s edge.
I treasure the time just after sunrise when I run the boat to my favorite corner of the lake, silence the motor, and sit. Everything is still with only the sounds of nature in the air. “Peaceful” doesn’t do justice to the feelings I have on these mornings.
During the day, the sun bathes the beach and the lake invites us to play. The water is clear and cool and ideal for swimming. The lake is large and the perfect playground for our boat, wave runner, and kayaks.
It’s berry season, and my wife takes to the hills with her family to gather wild huckleberries. If the harvest is good, huckleberry cobbler and pancakes are on the vacation menu. If it is very good, we will enjoy huckleberries throughout the year.
My wife’s family has lived in this area for many generations, and a visit here is a reconnection with those people and that special history. Our children learned to swim here, as did their mother, grandmother, great-grandmother, and ancestors past. Some of my siblings will join us here to share in the peace and the beauty, and it has become part of their lives as well.
My body is not as strong as it was pre-transplant. Fatigue will remain a regular part of my life as long as it’s necessary to take medications to keep the evil myeloma cells at bay. But none of this matters when I’m here.
I forget about the physical limitations, the changes, and the future risks.
Time slows down here. This is how I mark this special day.
Because of the work we did a year ago, as well as before and since, I can sit in my boat on the lake this early morning and listen to the loons and watch the eagles. I can swim and jet across the water. I can enjoy the company of family and friends.
I’m reminded that it is good to be alive.
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Mark's Photo For The Month
I much prefer my view in 2017 to the view from my bed in 2016.
Photo copyright © 2017 Mark Pouley.
Mark Pouley is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month. You can view a list of his columns here.
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I congratulate you on your 1st birthday. I hope you enjoy many more without medications. In June I celebrated my 5th birthday. It is nice to have the doctor tell me I am still in remission. I hope you have a lot of those reports. Happy Birthday.
Congratulations Mark! I'm just 11 days ahead of you in the process. You've captured your feelings and mine so well. Let's hope for many more family vacations and memories to be made. Love your photographs of a beautiful part of the world. Ps. I had a cupcake with my grandsons for my 1 year anniversary. It was the best ever!
Thanks for the great column.
Wonderful and inspring column, Mark! Congratulations on making it to your new birthday. That is certainly great news. It is also good news that you are feeling well, getting your strength back and enjoying life. I pray that continues for you. My husband is approaching his second new birthday on August 31 and your experiences parallel one another.
Congratulations Mark,
Your story is very inspiring. I am 6 months out from my diagnosis of multiple myeloma and renal failure. It’s great to read stories like yours because it gives me hope that I will be able to respond to treatments and be able to enjoy my favorite things in life again.
I am very concerned about my renal failure because my numbers seem to be stuck and not moving up or down. I have read that the chemotherapy drug melphalan may reverse my kidney condition while putting multiple myeloma into remission.
I have faith in God that this will happen and now that I have read your story I know He is at work blessing the doctors with their abilities to help me get better and live a longer enjoyable life.
Thank you for your story. I am looking forward to the day I can begin my transplant process. My local oncologist seems to think I may not need a stem cell transplant to get my myeloma into remission. I will soon visit with experts in multiple myeloma and stem cell transplants and faithfully they will have good news for my multiple myeloma and kidneys and I can establish an anniversary day.
Thank you for the congratulations.
Loveparis: no cupcakes, but a lot of play time with the grand babies was great.
Irv: I'm sorry to hear about your renal failure. That is an experience I avoided so I can't give any advice. All I can say is good luck and work hard. It should be worth it in the end.
Thank you Mark,
I am working hard and God willing my renal failure will reverse itself. Thanks again for your great article!
Congratulations on your rebirth day. It's a good feeling when we look back to those days prior and after our stem cell transplants knowing that we are survivors. Don't worry, that fatigue will eventually go away and one day you will just say, "I really feel good today." That day, for me, took 6 years. I hope that your day will be much sooner, you have a beautiful place to go to each year for your special day. May God bless you and keep you healthy. Keep up the good numbers! Seven-year survivor, Pat
Mark,
So glad to hear you're doing well and back to a relatively normal life. You were instrumental in encouraging me to go through the transplant and I will be forever grateful for your encouragement and willingness to share your knowledge and experience. I'm back to my regular life and in complete remission. May God bless you and grant you many more summers at the lake!!!
Congratulations on your 1-year anniversary. You write beautifully on the place you are in right now. Both your surroundings and your reflections. Remission is to be celebrated. I am 7 years out of my stem cell transplant and I am still very alive and living large.
Thank you for your column, Mark. Your transplant story has been my guide and inspired me. You are an excellent writer and super awesome photographer!