Three Years Post Transplant Appointments...All is Well!

It has been a busy couple of weeks with doctors appointments, but it makes it all worthwhile when the news is good! Both our local oncologist and the team at Duke continue to be pleased with EZ's stability, numbers and undetected M-spike. For now, he continues with visits every other month to the Cancer Centers of North Carolina to see Dr. Alan Kritz, and the Duke ABMT Clinic to see Dr. Cristina Gasparetto (only once a year now). They both agreed he should stay on 10 mg Revlimid as maintenance.

Why not take a little snooze while you wait?

Here is the happy patient with Dr. Gasparetto (sorry it's blurry!). She is such a wonderful, caring oncologist and spent real quality time with us:

After EZ's appointment we took a victory lap down and around the clinic hallways. How well we remember being in the position of so many we saw that day... no hair, feeling so weak and sick, sleeping, receiving stem cells, or harvesting stem cells all hooked up to that amazing aphresis machine! (For a look back on our journey, you can click on the "Stem Cell Transplant" label.) I was deeply touched by a nurse hugging and comforting a wife/caregiver who was in tears in the hallway, out of her husband's sight. We saw them walk into the clinic, and he was so weak that a staff member followed along behind him with a wheelchair fearing his strength would give out. It brought back memories of a day I felt exactly like her...scared to death! Hopefully EZ can give others hope that they too will be taking a victory lap one day. They certainly are in good hands at Duke!

Below is a look back on what I wrote the day EZ's stem cells were harvested for transplant on August 17th of 2010:

What a day of celebration this is for us as we look back on all the steps it took to get us here...23 chemotherapy treatments, 22 radiation treatments, 8 months of doctor's visits, 31 days hospitalized at Rex, 26 days unable to get out of bed, 5 months of walking with crutches or a walker, surgery to have a port put in, surgery to have the port taken out and a Hickman catheter put in, echo-cardiogram, EKG, chest x-rays, 3 bone marrow biopsies, a failed intrathecal pain pump, 2 great physical therapists, brilliant oncologists, long bone x-rays, MRIs, CTscans, and Neupogen injections. But most of all, we are here because of the power of your prayers and a mighty God who loves us and has a perfect plan for us, all in His perfect timing! Here is Ernie with his stem cell harvest after 6 hours of aphresis.

We always have to take a picture of EZ beside his pic on the Hall of Fame in the Transplant Clinic. It is encouraging to see so many survivors on that wall!!

So very thankful that, for now, all is well.

Wordless Wednesday - EZ Makes Wall of Fame at Duke

 

Two Years Post Stem Cell Transplant!

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.

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

14th Annual Patient Reunion for the Duke ABMT Program

Saturday, October 29th was a day of celebration. A day to look back on difficult days, and to look ahead to better days. A day to catch up with new found friends who shared a common experience at the clinic. A day to once again thank the amazing staff at the Duke Adult Blood and Marrow Transplant Clinic. A day to share a meal and rejoice with patients and donors. A day to look around a ballroom full of survivors and find hope.

This event has been taking place for 14 years and it was a joy to be attending for the first time. I pray we will be in attendance for many years to come. It took place at the beautiful Washington Duke Inn and Golf Club on a drizzly Saturday morning.

We checked in, got our nametags, stood as a boutineer was pinned on Ernie's shirt, received a free raffle ticket, grabbed a muffin, and began to search for a few familiar faces. Here we are with Cookie and Paul, friends from Charlotte who we met at the Clinic following Paul's allogeneic transplant for a form of leukemia. He is doing wonderfully and although Cookie and I keep in touch by e-mail, it was great to see them and enjoy a delicious lunch together.

October 2011

September 2010

We also re-united with Rick and Nena, from Charlotte. Rick had an autologous transplant shortly after Ernie, for Multiple Myeloma. He is in complete remission, back to work and feeling well. We have kept up with Rick via his Caring Bridge sight. What a difference a year makes!

October 2011

September 2010

And here EZ is with his oncologist at the Clinic, Dr. Christina Gasparetto, the leading Multiple Myeloma researcher at Duke. We feel very blessed to have her as his doctor.

One cannot walk down the hallways of the ABMT Clinic without noting the photographs of survivors that line the walls. Ernie and other first year survivors proudly lined up for their individual photos, and then all survivors posed for a group shot. What a blessing to see so many smiling faces gathered in one place, dominating blood cancers!

Stephen Gray, a caregiver for his son, Kyle, who underwent a transplant for aplastic anemia as a college student, was the guest speaker. He educated and entertained us as the caregiver and parent of both a patient and a donor (Kyle's 16 year old brother, Evan, donated his stem cells). Kyle looked fantastic and praise the Lord he, and his brother, are doing well! A few things Stephen said really struck a chord with me as a caregiver:

The pay for a caregiver? The health of your loved one.

Never stop learning...keep your spirit young.

Live your new life to the best of your ability.

If you think my hands are full, you should see my heart!

Laugh more. Children laugh on average 200 times a day. Adults...30-40 times a week.

There are four kinds of people in the world:  current caregivers, those who have been caregivers, those who will be caregivers, and those who need a caregiver. (Rosalyn Carter - Helping Yourself Help Others)

A wonderful buffet awaited us, which made everyone chuckle since transplant patients are often told to steer clear of buffets! I guess this could be an exception since there were no children at the event who might be prone to touching everything. Of course I had to take some pictures of the desserts...

A special moment occured when 47 year old Linda Davis, fighting acute lymphoblastic leukemia three years ago, met her donor, 26 year old Ryan Dunham. Ryan was an Air National Guardsman who joined the registry in 2007, getting the call just one year later that he was a match. He said his family always taught him that if you have something, give it! It was said that 60 percent of patients who need a transplant can't get one and will most likely die. Willing donors are critical as 70 percent of patients do not have a tissue match in their family. Though Ernie was able to have a transplant using his own filtered stem cells, many don't have that option. If you are healthy, please take the time to register with Be The Match and perhaps you could give someone else the gift of life. 

Various baskets and items were raffled off throughout the day, and our ticket proved to be one of the lucky numbers. We received a $20 gift card to Jason's Deli (one of the sponsors for the reunion), and look forward to trying it for the first time! Any recommendations?

Many thanks to the staff from the Clinic for a wonderful reunion. We are forever connected, and indebted! 

  

Celebrate! One Year Post Transplant Appointment at Duke

Wednesday was a joyful day! We headed to the Duke ABMT Clinic with EZ's test results in hand, knowing they had also been sent ahead to Dr. Gasparetto (the oncologist) and Amanda (her nurse practitioner), for their review. We were excited to once again visit the place where Ernie was given a clean start, free of multiple myeloma cells. A place where we spent a month preparing for, and recovering from, the transplant. To help show our gratitude, I baked cookies to share with the nurses and doctors, and we looked forward to seeing every one of them and giving lots of hugs. It felt, in some ways, like going back home for a reunion. And best of all, we already knew we were going to celebrate good news! Everyone was  elated to see Ernie looking so well, especially walking  around without a walker or cane! Remember, for the most part, they see patients during the worst of times. I guess I was so busy handing out cookies and hugging, that I forgot to take pictures!

In layman's terms, the MRI, Skeletal Survey, Urinalysis, Bone Marrow Biopsy and Blood Work all showed that EZ remains in complete response! Therefore, the transplant and other treatments have been a success! Hallelujah! We know that the stem cell transplant and maintenance therapy he is on, are his best hope for long term survivorship, so for now, we know they are working and we must simply pray it stays that way. His check-ups at Duke will now be every six months, rather than every three. Of course, until we hear otherwise, he will continue to see Dr. Kritz at our local cancer center for monthly labwork and bone strengthener. Ernie has dominated Multiple Myeloma!

Picture of EZ in his dominate t-shirt one year ago!

We are looking forward to attending  the 14th Annual Patient Reunion for the Duke Adult Blood and Marrow Transplant Program on October 29th. There are, sadly, a few faces we met walking the halls, that will not be at the reunion, losing their battle with leukemia. But we hope to see many others that fought blood cancers alongside us.

We take it one day at a time, satisfied to live with the side effects of the disease and treatments, being grateful that the cancer is no longer multiplying out of control, invading EZ's body. In the struggles of the the past year, we have certainly found this to be true..."So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10 

Thank you to everyone who has prayed for Ernie's healing. Once again, let us say that your love and support mean the world to us as we continue to fight multiple myeloma. Have a blessed weekend and find something to celebrate!

DOT+30!

This is a big day for anyone who has had a transplant. It marks the point after which the doctors say we can become a bit more relaxed about Ern's exposure to people, as long as they aren't sick. We are celebrating today from the beautiful NC mountains where we are counting our blessings and enjoying some continued rest and relaxation.

At this point Ernie's platelets stand at over 316,000 from a low of 8,000. His white blood cells are now 4.2 up from a low of <.1. He has never run a fever or had an infection during this process. His kidneys continue to function great, he never developed mouth sores, and his lungs remained clear. And now, he is walking with only a cane, and seeing an increased ability to sit for short periods. Thank you Lord for being his Great Physician, and walking with him every step of the way!

And now, we are off to see if he can sit in the front porch swing...it's worth a try!

The New "Normal"

Everyone recovering from an illness wants things to return to 'normal'. With cancer, it's no different. For me, returning to normal starts with what I call the 'new normal'.

Today's post will be about my 'new normal' as I begin my recovery, post Bone Marrow Transplant (BMT).

• Sleep: I do this alot! At any moment, I can be found drifting off throughout the day. Used to be an early bird waking up naturally by about 5:30 or 6:00. Now I find the clock occasionally reading 8:30 when I wake up. The experts say fatigue is the number one side effect following transplant...they're right!

• Shampoo: Don't need that anymore...no hair to shampoo!

• Shaving: Used to shave with a razor every morning and still got a 5 o'clock shadow... now it's electric only, face and head, and a whole lot less often.

• Long Walks: What used to be a couple of miles walking in the woods with my dogs, has now been reduced to a few laps around the driveway with a walker. I miss that alot and hope that gradually over the next couple of months my endurance will build for longer walks, sans walker!

• Sitting: I used to sit to eat, sit to watch tv, go out to the movies and sit, sit at meetings for work, fly around the country sitting on airplanes, sit to drive and on and on. Well the new "sitting" is in my lift chair, very reclined, or in the bed, horizontal with head on pillows.

• Driving: Haven't done this since March...Linda is now my chauffeur.

• Dressing Myself: Putting on socks and tennis shoes are out of the question since I can't bend over. I'm pretty good with my grabber to help with shorts and shirts though, so they are no problem.

• Eating: I stand up to eat, though this is improving! No fresh fruits (I miss strawberries and blueberries) and raw veggies for now unless they are thick skinned. Some of the foods that taste really good to me include Cheetos, cantalope, watermelon, Whole Grain Cheerios or Honey Nut Chex cereal, English Muffins, ice cream, Italian Ice, and popsicles.

• Weight: Well, the new normal is alot less! I have lost about 45 pounds since my diagnosis in January. Another 30 and I might have to look into a new swimsuit!

• Work: Was a pretty big part of my life, from 20 years at IBM, to CEO of start-up companies, to starting a handyman business. Now I am forced into an early retirement and on disability, but I sure hope to exercise this brain for a long time to come, whenever the opportunity presents itself. Hey, I changed a doorknob out today and no telling what I'll accomplish tomorrow!

• Outlook: I don't know if I will be here three or thirty more years. I do know that I have turned my life over to the Lord and I am very content with His plan for me. He has carried us and provided everything we need. One thing I do know, I will enjoy every moment He gives me, I will try to live it joyfully, and hopefully bring glory to Him in the process.

The new normal isn't a bad normal...just different. Things continue to improve every day and I hope to return to driving, traveling, long walks beyond the driveway, using shampoo, sitting in church, a restaurant or movie theater, putting on my own shoes and socks, using my power tools, sitting on the floor with the grandkids, and sleeping better at night so I can once again be an early bird. Only time will tell...

"...for I have learned to be content whatever the circumstances." Philippians 4:11

Grandparent's Day 2010

Sunday, September 12 was National Grandparent's Day. In honor of this special day, I made Mom and Dad a picture book of their grandkids. All the pictures featured in the picture book were taken by Emily Collins Photography, and I hope they will enjoy having the family pictures bound in a book to carry with them wherever they go.

Click here to view this photo book larger

Stop to Smell the Roses...

Aren't these roses just beautiful? It was a gorgeous September day as we were leaving the Clinic, so we decided to take a little drive over to the Duke Chapel. I found these roses blooming their hearts out right in front of the chapel. I hope I never stop marveling in God's creation, and of course I never want to be so hardened or busy that I don't stop to smell the roses and thank the Creator.

I have always loved the architecture and beauty of the Duke campus and hopefully these pictures will show you what I mean. It brings me back to the months our family spent in England when Ernie worked for IBM...castles, wooden doors, archways, spires, flowers, leaded glass, and stonework. The craftsmen who create such structures amaze me and I never want to take them for granted. Just look at the detail...even if you're not a Duke fan!

I wonder how many students, faculty and staff walk through these doors every day and take them for granted...

On another note, there is a very recognizable part of the Durham landscape. It is often called the "Green Pickle"... I have no idea why. Being directionally impaired like I am, I was thankful whenever I saw this building as I knew that at least I was in the vicinity of the apartment! As we navigated Durham during our time there I often said to Ernie, "See, I would literally be lost without you!" and it is the honest to goodness truth.