From Clinical Trial to BMT

It’s the week we’ve been waiting for. This Friday, Justin will be admitted into the Bone Marrow Transplant unit to start his treatment process, ultimately resulting in the transplant of donor stem cells and a three week stay in the hospital.

On a daily basis I am asked how Justin is doing and if he is nervous about what comes next. I never really know how to answer so my response is usually: “he’s doing well, I think he’s excited to be moving forward and finally getting it done.” Last night, while we were eating dinner I finally asked him myself.

hes-been-waiting-for-a-year-since-january-2016-when-we-were-first-told-about-the-possibility-of-a-transplant-for-this-to-begin-hes-ready-hes-been-briefed-by-doctors-nurses-social-wor“So, are you nervous about the transplant?”

I wasn’t surprised by his nonchalant response.

“No, not really.”

I told him that I get asked this question a lot and never really knew how to respond, but he approved of my canned answer.

With one more pre-transplant treatment left tomorrow, Justin will be saying goodbye to his clinical trial team, who have been so incredibly supportive and steadfast throughout this process, and by Friday we’ll be meeting his next medical crew: The BMT Team. We’ve toured the unit, been given the tricks of trade, and have a much better idea of what to expect. We are confident that he will be in excellent hands as he goes through the chemotherapy, radiation, and other initial treatment processes before the transplant, and will be well looked after as his body adjusts to his new immune system.

In addition to his healing, Justin’s days in the BMT unit will be filled with video games, walks, word searches, movies, and fighting fatigue. I will be working remotely, from my little pullout couch, reading, writing, and most likely, learning how to play video games.

As always, I will be updating Project: Transplant as things progress – if you’d like to reach out please feel free to send us an e-mail or comment on a post! To get these updates straight to your inbox, be sure to hit the subscribe button!

Posted in Bone Marrow Transplant | 11 Comments

T-Minus: Three Weeks

The University of Michigan gives patients access to something called “The Patient Portal” – it is an online system to track appointments, blood work and test results, and documents. Fortunately, for Justin and I, this portal also comes with a smartphone app that we both have on our iPhones. It allows us to log it at any time and see what is on the horizon. My uber organized and logistic-focused brain appreciates the ability to have this information any time, anywhere.

As we get closer to the transplant, more and more appointments have been added to the portal. Blood work, PET scans, regular treatment appointments, a bone marrow biopsy, pre-transplant meetings… it seems that we will be very familiar with the halls of U of M Hospital over the next couple of months.

In the event that Justin’s donor clears all required medical tests in January, Justin will be admitted into the hospital the third week of January, to start the regimen of treatment and preparatory procedures required for the transplant that is scheduled for the following week.

We have been told that if all goes according to plan Justin will spend a total of 3 to 4 weeks in the hospital, to then come home for the remainder of his care.

Once Justin is home I will be his primary caregiver, I’ve even had to sign paperwork dedicating myself to that role and responsibility. It seemed odd to me, that as a wife, I had to sign paperwork saying that I would commit myself to taking care of my husband. I suppose all of the policies have been put into place for a reason.

As we prepare for the uncertainty and the hardship that January will undoubtedly bring, we are enjoying time at home and with our families. Over the coming weeks I will be cleaning the house, organizing paperwork, getting my work life and schedule organized, and getting us ready for the day we get in the car and head to the hospital for admission. We don’t anticipate a lot of updates to share over the next couple of weeks but I will be sure to pop in, and give you the signal that all is well on our end.

Thank you, as always, for your continued support!

happy-new-year

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Project: Transplant

When you think of the word transplant, typically you think of an organ, or other tangible body part. It’s hard to imagine transplanting something you are relatively unaware of. When we originally met Justin’s hematologist, he said that a bone marrow transplant would someday be down the road, it would be a last resort to get him to remission. It wasn’t until four years later that we heard that term come up again in his office. This time it was part of the proposed treatment plans, even now, almost a year later, I am still not entirely sure what it means scientifically, but the headline is: a bone marrow transplant replaces the patient’s immune system. Justin will be getting a new immune system.

As you can imagine, going through such a dramatic medical procedure can bring about a lot of attention, always well intentioned, but sometimes overwhelming. In the last year, I have been doing my best to only share my story as a caregiver, limiting the personal information about Justin and his medical journey. A long time ago, Justin and I decided together that my blog [THE CORNER OFFICE] would be used for me to share my story. Together, we continue to decide the details of what is shared there, which is not much. We understand, that for the people that make up our support system, that can be difficult.

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It was with that support system in mind that we decided it was time for a second blog, one specifically designed to archive Justin’s experience as he heads into his transplant. This will be a space for you, our support system, to stay updated with Justin’s progress, and connect with us as we make our way through the next 13 months. It won’t be easy, and I can’t promise I will update as much as I’d like, but I am dedicated to using this space for you.

Feel free to look around, leave a comment, shoot us an e-mail, or share the link with anyone that you know that is interested in keeping up with this aspect of our lives. The Corner Office will continue to be my space for my story as a caregiver, but I will also be focusing content on self-care, self-improvement, health, and creating a supportive online community – my personal mission for that blog.

Stay tuned later this week for more formal updates on Justin’s progress. We just finished up an appointment with his treatment doctor and will be gearing up for a January full of appointments before his admission at the end of the month. We’ve got a long road ahead of us, but we are incredibly grateful to have you along for the ride.

 

Posted in Bone Marrow Transplant, Gratitude | Tagged , , , | 2 Comments