Stem Cell Transplant: Then

Hi Keep Pounding Rob Team!

Stem Cell Transplant: Then

We wanted to pick a few pictures that signify a year ago today, when Rob began the stem cell transplant for Multiple Myeloma.

Side note: For those new to Rob’s blog, welcome! Feel free to read Rob’s journey on this blog, from diagnoses to stem cell transplant, to living with Mulitple Myeloma through the 1 year anniversary of the transplant today, 2/27/20!! ๐Ÿ™‚ ๐Ÿ™‚

Please don’t hesitate to contact us at KeepPoundingRob@gmail.com if you’d like to talk with another Multiple Myeloma patient and/or caregiver. ๐Ÿ™‚

Part of the stem cell transplant. We are so thankful to the stem cell transplant team!!

Stem Cell Harvest, a two day procedure that harvested one million stem cells. 1/3 to be used for the transplant, 1/3 to be used for research, and 1/3 to be stored in reserve. The Apheresis Unit at Levine is outstanding on so many levels!

Each foot represented a walk down the hall, often times with great difficulty but incredible determination. The caring teams at Atrium 4B had these feet that Rob picked up after each walk. They were so encouraging, and helped Rob gain a new appreciation for walking in general, and they are truly angles here on earth.

Playing some cards during his 2 1/2 week stay (the first time, and his 1 week stay the second). If anyone new to the stem cell transplant world is reading this, cards and board games help pass the time after transplant.
Ringing the bell on 4B, on the way home from Rob’s stem cell transplant!

Thankful

Happy Thanksgiving Keep Pounding Rob friends and family! ๐Ÿ˜Š

A quick update on labs and eyes (yep, plural).

The monthly labs look great!! The multiple myeloma remains inactive. We are so thankful beyond words!

Rob’s right eye that had the detached retina is healing well, though taking longer to heal. He hopes to have full vision in that eye around the New Year.

Now on to Rob’s left eye. Rob started seeing spots, swirls and a black curtain in his eye after the hematologist appointment two days ago.

When we called the retina specialist, they said to come in and not eat or drink anything between that time and the appointment.

Luckily, what Rob was experiencing was not a detatched retina, but retina tears. The retina specialist was able to perform a laser procedure to repair the tears.

We are so thankful it didn’t involve surgery! Rob’s vision should be clear in that eye in a week or so.

Despite these setbacks, we are so thankful to have made such progress from this time last year!!

I mean this with all of the sincerity I can express on a blog- we could not have gotten this far without the Keep Pounding Rob team!! Ya’ll are the most kind, loving and thoughtful people ever, and we are so fortunate to have each of you on our side!!

Happy Thanksgiving, and much love to you all!!โคโคโค

Monthly Labs and Eye Update

Hi Keep Pounding Rob team!

Rob’s monthly lab work looks great! He will will continue chemotherapy, 3 weeks on, 1 week off.

“If your disease re-appears, we have trials!” A heartfelt quote from Rob’s hemtologist, during the appointment today.

Without the past multiple myeloma drug trials, patients would not have had as good outcome now verses 10 years ago.

Rob told his doctor today he is ready to participate in a trial if his cancer relapses. It feels good having that plan and mindset in place- especially as he remains in “Very Good Partial Response.” Not as good as complete response, and thankfully not as bad as no response.

On a much  lighter note- check out this creative and fun surprise that one of his nurses gave us:

A Halloween hand filled with candy!๐ŸŽƒ๐Ÿ˜Š๐Ÿ‘

On to the eye update:

Rob has been following the surgeon’s orders of lying down all day and night on one side with the exception of 3 10-minute breaks. He is able to walk up the street and back once a day- using the cane as a precuation since he still can’t see out of that eye.

The longer time to get his eyesight back is due to the many other tears they saw during surgery, in addition to the detached retina.

He probably won’t be able to see out of that eye for another few weeks. We will know more on this Friday, along with an update on positioning restrictions. I’ll post an update here after the appointment.

While Rob wasn’t able to go to the Multiple Myemoma Research Foundation (MMRF) 5k this past weekend, I went and picked up our shirts and some other goodies. More about this awesome event in the next post. ๐Ÿ˜Š

Thank you to all that supported us in the walk! We have big plans for MMRF 5k next October (date to be announced) including team shirts for our Keep Pounding Rob walkers and runners!๐Ÿšถโ€โ™‚๏ธ๐Ÿšถโ€โ™€๏ธ๐Ÿƒโ€โ™‚๏ธ๐Ÿƒโ€โ™€๏ธ๐Ÿ‘๐Ÿ‘Š๐ŸŽ‰๐ŸŽ‰๐ŸŽ‰

Thank you so much for your thoughts and prayers!!!

Darn Bump in the Road

Rob has a detached retina and hemorrhage, and will have surgery tomorrow.

The stem cell transplant put him at increased risk for it, as did family history.

We are thankful to add an excellent eye surgeon to his care team!

Surgery is scheduled for 11:45 tomorrow, and I will update afterwords.

Thank you for your continued thoughts and prayers!!

Keep Pounding Room at LCI

Levine Cancer Institute (LCI) has a new room for patients and caregivers to relax in, while in between appointments and testing.

We stopped in briefly this morning and took a few pictures. This is a welcome addition for cancer patients and families!!

More pictures and much more information to come. For our new friends to LCI, this is located next to Lori’s gifts, in between LCI I and LCI II buildings, on the 3rd floor (right around the corner from Caribou Coffee).

Good report with a slight detour

Great news, the labs from today look great!! Once again, no active multipe myeloma! Thank you for your prayers and thoughts, Keep Pounding Rob team!!๐Ÿ˜Š๐Ÿ‘๐Ÿ˜Š๐Ÿ‘

Now for the slight detour:

Today at Rob’s monthly infusion, Rob began having trouble seeing out of his right eye. It came on fast, and he could not tell you how many fingers you held up, and then couldn’t tell you the color of your hair. Right now, he can’t see you wave at him standing a foot away.

After consulting with the hematologist, we were worked into the ophthalmologist office. We learned that Rob had an eye bleed, causing Rob to not see out of his right eye. The good news is that there is no damage to the optic nerve.

They think the blood should drain within 48 hours, and then his vision should return. Rob will then see a retina specialist.

He doesn’t think it is multiple myeloma related, thankfully!

He did mention wanting Rob off of the daily aspirin that he is on (to prevent blood clots caused by the chemo), but also understands this might not be possible. We’ll know more on that next week.

Hopefully, this is a minor issue that comes with age and nothing else. We will know more Wednesday, and post an update then.

Thank you for the continued prayers and thoughts, Keep Pounding Rob team!!

Multiple Myeloma Teams for Cures Walk/Run 5k!

Hi Keep Pounding Rob team!!

A quick update, and then on to some EXCITING news!!!

Rob had a great monthly report from Levine today! His cancer remains inactive. He will have a lung scan next week, as a proactive approach to keep an eye on an area there. Heโ€™s continuing monthly IVIG infusions, labs, palliative care and oncology appointments.

Thank you for your continued thoughts and prayers!!

EXCITING NEWS!!!

What: Multiple Myeloma Research Foundation Team for Cures 5K Walk/Run

When: Saturday, October 26th, 2019

Where: Clanton Park 1520 Clanton Rd. Charlotte, NC 28208 

Keep Pounding Rob Walk Page: https://walkrun.themmrf.org/Charlotte/KeepPoundingRob

On October 26th, 2019, Rob and I are participating in a walk to raise funds for the Multiple Myeloma Research Foundation. (MMRF).

A brief explanation directly from the MMRF website of how amazing this organization is in the fight for a cure:

โ€œThe mission of the MMRF is to relentlessly pursue innovative means that accelerate the development of next-generation multiple myeloma treatments to extend the lives of patients and lead to a cure. Nearly 90% of total budget goes directly to research and related programming. The MMRF has been awarded Charity Navigatorโ€™s coveted four star rating for 12 consecutive years, the highest designation for outstanding fiscal responsibility and exceptional efficiency. The MMRF has facilitated unprecedented accomplishments including helping to bring ten new drugs to market that are now standard therapies for patients with multiple myeloma and being used or explored as treatments for other cancers.โ€

We are excited to join other multiple myeloma fighters on October 26th!! If youโ€™d like to participate in the walk with us, either in person or as a “virtual” walker, please visit Robโ€™s Keep Pounding walk page here:

https://walkrun.themmrf.org/Charlotte/KeepPoundingRob

All donations go directly to the Multiple Myeloma Research Foundation.

Thank you, Keep Pounding Rob team!!! We never dreamed Rob would be preparing to walk a 5K, and appreciate your thoughts and prayers that helped him get to this point!!

A picture’s worth a thousand words!

Hi Keep Pounding Rob team!

Before I explain the pictures, Robโ€™s monthly cancer labs look good! The multiple myeloma remains inactive at this time. We are so thankful! Chemo continues with three weeks on, one week off.

He had excellent reports from his cardiologist and rheumatologist, and will follow up in six months.ย 

We are monitoring blood pressure regularly, and we have found a good balance with one medicine helping lower the high heart rate while another is helping raise the low blood pressure (due to chemo and stem cell transplant).

Now to the pictures: The pictures above are incredibly significant and we wanted to share. The picture of Rob on the stairs (which he had no idea I took), says so much about his recovery.ย 

This is the first set of steep steps (other than the ones leading to our back yard) that he has mastered. While going up and down steps is still tricky, he now can attempt-and succeed โ€“at walking up and down stairs in public.ย  We have always said slow and steady wins the race-and now the staircase!ย  ๐Ÿ˜‰

The second picture was taken recently with our dog, Dexter. This is significant as a year ago, Rob was throwing the tennis ball for Dexter.ย Thatโ€™s when he first felt pain in his shoulder, and he thought he had injured it throwing the ball.ย 

When he became unable to lift his arm, we knew something more was going on. Granted, we had no idea it was cancer, as that was the furthest thing on our mind.ย  Looking back at a year ago, we would have never imagined that Rob would have been diagnosed with cancer, have 8 cancerous tumors, undergo chemo (including high dose), a stem cell transplant, and continuing chemo today.ย  After the diagnosis, we never thought that less than a year later, the multiple myeloma would be inactive and under control.ย  We also would have never imagined the support, love and kindness shown to us by our amazing Keep Pounding Rob team!!

Thanks to his amazing medical teams and all of you, we can enjoy and embrace these pictures of everyday life on a whole new level!! A picture really is worth a thousand words!!

Up Next:ย 

Rob continues chemotherapy, and can venture out more, with caution (having hand sanitizer and masks nearby, and avoiding anyone is who is knowingly sick). Heโ€™ll get re-vaccinated this month. Anyone who goes through multiple myeloma, chemotherapy and a stem cell transplant losses significant portions of his or her immune system, including the protection provided by all vaccinations received as a newborn.ย  The other vaccinations occur 1 and 1 ยฝ years after transplant.

Lung scans will occur in the fall, to keep a proactive eye on an area there.ย 

Weโ€™ll continue to provide updates here, along with some information about resources that LCI offers cancer patients and families.ย 

Good luck to everyone preparing for (or already at) school and college!

Thank you for helping us Keep Pounding!!