Saturday, August 25th, 2012 marked EZ's 2nd birthday, post stem cell transplant. It's quite sobering to look back not only to the day of transplant in 2010, but to all the events that led up to that point. From the MRI that first indicated "abnormal cells in the sacrum", to the sacral biopsy that defined the cells as a plasmacytoma, to various other tests confirming multiple myeloma, to radiation, to chemotherapy, to 26 days bedridden in the hospital, to home physical therapy to regain strength, to stem cell preparation and collection, to high dose chemotherapy taking everything to zero, to receiving those healthy stem cells and starting over, it has been quite the journey. You can read about transplant day here, and EZ's first birthday here. We both feel it is so important to remember where we've been, in order to never stop appreciating where we are today.
We began our celebration with a special dinner Friday night. The Dew Crew joined us for many of EZ's favorites: crackers and cheese, grilled beef, sauteed mushrooms, homemade mashed potatoes, peas and carrots, and chocolate cream pie. The grands were so ready to party that they put their hats on the minute they arrived and wore them most of the night! Love them to pieces!
Nick wasn't able to stop by Friday night, so we met him for lunch Saturday at Red Lobster for some "Endless Shrimp". Thankful he took a little break from studying, following his first week of dental school!
For a little walk down memory lane we drove Mom by the apartment we called home for 16 days, and then headed to the Clinic to show her where the transplant took place. (She actually hadn't visited us during that process because she contracted shingles while we were away!) We met some amazing people during those daily visits to the ABMT Clinic, from fellow patients, to doctors, physician assistants, nurses and staff. We feel nothing but gratitude for the treatment EZ received at Duke.
As we reflect on the past year there is MUCH to be grateful for. Here is our short list, not all-inclusive by any means:
1. NO HOSPITALIZATIONS.
2. EZ started doing all the driving again.
3. We have been able to occasionally dine out.
4. We went to two movies.
5. We attended a UNC basketball game.
6. We sat through Cirque de Soleil and thoroughly enjoyed it.
7. We traveled to our nephew's wedding on Duck Key, and then drove all the way to Key West.
8. EZ's M-spike remains at 0 (non-detectable).
9. No need for a walking stick or cane anymore.
While EZ has enjoyed complete response for these past two years, with stable blood counts, we certainly realize that the "myeloma monster" could decide to rear its ugly head again sometime in the future. All we can do is remain diligent in his care and pray it doesn't. Daily life isn't pain free, or without maintenance chemotherapy and the constant management of side effects. Consistent, uninterrupted sleep is difficult and elusive. Fatigue is a real battle. EZ simply does the best he can every day. His current regimen as far as prescription medication is:
Revlimid, 10 mg daily (for the past two years)
Oxycontin 60 mg 3 times a day
Hydrocodone 10-325 as needed for breakthrough pain
Lyrica 150 mg 2 times a day
Metanx 2 times a day
Valtrex 1000 mg once a day (through December)
Zoloft 100 mg once a day
Aredia infusion every other month (through December)
(Taking Miralax and stool softeners daily keep constipation from the medications at bay)
For those whose bodies have succumbed to this blood cancer, our hearts go out to their families. We especially miss Sean and Paula from the UK, and will forever feel they were our friends across the pond, who fought valiantly to live, bringing us a touch of humor whenever they could. We are thankful for our blog readers, both those who we feel we now know, and those who stop by anonymously. We hope you have gotten to know our family and that we can be an encouragement to you, in both the good days and in the days when we struggle. EZ and I appreciate your prayers more than you will ever know, and we believe they make a difference.
Being a UNC grad, Nick never cared for this hat much, but EZ wore it to cover his bald head when he went to the clinic during the transplant process. Here is a look back at one handsome "Blue Devil" two years ago at the Duke ABMT Clinic.
Nick wasn't able to stop by Friday night, so we met him for lunch Saturday at Red Lobster for some "Endless Shrimp". Thankful he took a little break from studying, following his first week of dental school!
For a little walk down memory lane we drove Mom by the apartment we called home for 16 days, and then headed to the Clinic to show her where the transplant took place. (She actually hadn't visited us during that process because she contracted shingles while we were away!) We met some amazing people during those daily visits to the ABMT Clinic, from fellow patients, to doctors, physician assistants, nurses and staff. We feel nothing but gratitude for the treatment EZ received at Duke.
As we reflect on the past year there is MUCH to be grateful for. Here is our short list, not all-inclusive by any means:
1. NO HOSPITALIZATIONS.
2. EZ started doing all the driving again.
3. We have been able to occasionally dine out.
4. We went to two movies.
5. We attended a UNC basketball game.
6. We sat through Cirque de Soleil and thoroughly enjoyed it.
7. We traveled to our nephew's wedding on Duck Key, and then drove all the way to Key West.
8. EZ's M-spike remains at 0 (non-detectable).
9. No need for a walking stick or cane anymore.
While EZ has enjoyed complete response for these past two years, with stable blood counts, we certainly realize that the "myeloma monster" could decide to rear its ugly head again sometime in the future. All we can do is remain diligent in his care and pray it doesn't. Daily life isn't pain free, or without maintenance chemotherapy and the constant management of side effects. Consistent, uninterrupted sleep is difficult and elusive. Fatigue is a real battle. EZ simply does the best he can every day. His current regimen as far as prescription medication is:
Revlimid, 10 mg daily (for the past two years)
Oxycontin 60 mg 3 times a day
Hydrocodone 10-325 as needed for breakthrough pain
Lyrica 150 mg 2 times a day
Metanx 2 times a day
Valtrex 1000 mg once a day (through December)
Zoloft 100 mg once a day
Aredia infusion every other month (through December)
(Taking Miralax and stool softeners daily keep constipation from the medications at bay)
For those whose bodies have succumbed to this blood cancer, our hearts go out to their families. We especially miss Sean and Paula from the UK, and will forever feel they were our friends across the pond, who fought valiantly to live, bringing us a touch of humor whenever they could. We are thankful for our blog readers, both those who we feel we now know, and those who stop by anonymously. We hope you have gotten to know our family and that we can be an encouragement to you, in both the good days and in the days when we struggle. EZ and I appreciate your prayers more than you will ever know, and we believe they make a difference.
Being a UNC grad, Nick never cared for this hat much, but EZ wore it to cover his bald head when he went to the clinic during the transplant process. Here is a look back at one handsome "Blue Devil" two years ago at the Duke ABMT Clinic.
From EZ:
The last two years have proven again that the "little things" in life are so important. I have learned to cherish every moment with my family as they have shown me unwavering love through those times of loneliness or difficulty. I cannot express the joy that my children and grandchildren have brought me or ever repay my wonderful caregiving wife for the sacrificial love she shows me every day. The prayers of friends and family have made such a difference in my battle with this silent killer, and I owe those prayer warriors more than I can ever repay. My second year was better than my first, and I look forward to enjoying the blessings that our Lord provides me during my third.
"The Lord is good, a stronghold in the day of trouble; And He knows those who trust in Him." Nahum 1:7
I'm in tears as I read this post! I'm so thankful for your family and your testimony! Praise God for all that HE has done!
ReplyDeleteI, too, feel tearful - tears of joy for you and your family! I have never met you, except through our blogging and occasional emails, but I do feel you are a part of my life. Thank you so much for sharing the good times and the challenging times. It uplifts me and shows me a path to guide me through my life with myeloma. Blessings to you!
ReplyDeleteSusan
The Lord is my Shepherd, I shall not want. Psalm 23
Thank you Susan, and we too feel you are a part of our lives! Congrats on one year post transplant! I love the 23rd Psalm...memorized it as a child.
DeleteI am so happy for EZ and your beautiful family. I had 4 great years after my SCT. At ths time maintenance was not given so I was drug free except aredia. Having relapses am on rev/dex now, undetectable m protein ,.
ReplyDeleteBut what I really wanted to say is I too am grateful for every day, my wonderful husband and children.
I really enjoying your pictures, and your big beautiful family.
Although, I am not of the religious persuasion, I truly feel blessed everyday.
Thanks for sharing your family and thoughts with us all.
Thanks Christina for dropping in and sharing a bit of your own story. Four years drug free, except for Aredia, must have been wonderful! Thankful your m protein is still undetectable and that we both feel blessed every day. Now, if they could only cure this beast!
DeletePraise God! This is wonderful news!
ReplyDeleteWhat a great post! Congrats!! I loved seeing your celebration and all the things you are grateful for.
ReplyDeleteI loved reading this post as well and am so glad y'all had such a big 2nd Birthday Celebration!! Wish we could have been there but count us in for the 3rd! Love y'all!
ReplyDeletePraise the Lord! Happy Two Years Mr. B!!!
ReplyDeleteMeredith are you still at Rex? If so, please pass the good news on to those who so lovingly cared for Ernie during our 31 day stay, and give yourself a big hug from us! Those were some pretty dark days...
DeleteRejoicing with you. Isaiah40:31 "Those who wait on the Lord will find new strength...."
ReplyDeleteLove this verse as well...renewed strength is a great blessing! Thanks for rejoicing with us and may things continue to go well for you!
DeleteWhat a wonderfully happy post! I think you will have many more happy SCT birthdays, EZ.
ReplyDeleteWhat a wonderful post... I truly enjoy reading your blog almost every day and the family pictures are wonderful. Keep those birthdays coming and keep blogging!
ReplyDeleteCongratulations EZ on your 2nd SCT Birthday. Wishing you many years of health and happiness. You have a beautiful loving family and a great support team. You are truly an inspiration to me. I enjoy reading your blogs and viewing your family pictures. Thanks for sharing. I am 8 months post SCT and feel so blessed. You take care!
ReplyDeletePraying for continued good reports for you too Suzanne. Your one year anniversary of SCT isn't far away!
DeleteFantastic! Praise the Lord for His goodness! Blessings! Charl
ReplyDeleteWe are so glad you are in the place you are today after the rough journey you've had. We've followed you for a while through Leah's blog and can see what a wonderful family you have! It has put cherishing the ones we love in the forefront of our minds each day. We wish you only the best.
ReplyDeleteThank you so much for following our story,and for your well wishes!
DeleteCongratulations on the two-year mark! My relative with MM is coming up on a two-year mini allo SCT accomplishment as well and we well know the struggles of maintenance with Rev, etc., and the sleeplessness, sick stomach feelings, fatigue that go along with it. We are grateful for the blessings that have made it possible for the twins to come into this family and bring so much joy that makes taking the maintenance meds worthwhile. I know you cherish your family, EZ, and they in turn cherish you as well. May these days and weeks stretch into months and years of comfortably managing for you!
ReplyDelete