Husband with AML facing a stem cell transplant

Hi Lori,
Your words and encouragement are so soothing and exactly what we need now. My husband is so grateful to you for all your wisdom and positive attitude! I talk about you with him like you are one of our friends. 😊 Thank you for confirming the timing of your last chemo cycle before transplant. That’s so reassuring!

Yes, it can all be so overwhelming for me sometimes. I am grateful that things are aligning for the transplant, but there are so many details to attend to. I am anxious about a lot of things, mostly a good outcome for my husband. I have a deep faith and need to keep my heart focused on that. I so appreciate hearing things will get better.

We have a full day of appointments and a couple of tests with the stem cell team later this week. Today was the last day of oral chemo on this cycle! Yahoo! Here’s hoping we see his counts start to climb and his faitigue start to wane a bit so he can enjoy some activities over the next few weeks. Another biopsy is scheduled next week. Praying for best results possible.

I just signed a lease for an apartment located a half mile away from the hospital so I can walk back and forth instead of driving 30 miles each way in notorious traffic. Our dog is going to stay with a friend for the duration. I’ll miss her very much.

We have another amazing blessing coming our way as well in June. Our daughter is due with her second child and is scheduled to be induced on my husband’s actual birthday at the end of June. By that time, it will be his second birthday. 😊 The timing is extraordinary. So in the midst of all this hard stuff, we look forward to the birth of another grandson.

Lori, I believe your mentoring of all of us seeking refuge and hope in the dark days of diagnosis, alarming prognosis, and scary treatments, comes from a divine place. Thank you for your generous spirit, steady guidance, and sense of humor. Our burdens are a little lighter because of you.
Mary

Hi Mary, That’s great news about being able to stay in Chicago for the transplant. Much easier than relocating to Texas for a few months, though I know you’d both do it in a heartbeat if it was the better option.

Regarding your husband having another round of chemo before June, if it helps, my transplant doctor had also recommended that as well. As you said, with his last chemo early in May, this gives your husband time to recover his blood counts and some energy again before transplant in June. It also helps assure that he has minimal disease. The cleaner going into transplant, the better. My transplant was June 28th (2019) so basically a similar time frame. My last week of chemo was May 16-21, so I was feeling pretty perky again by the time I got to Rochester June 13th for testing and admission.

There is also one more round of chemo, called Reconditioning, the week immediately prior to transplant. The goal of this chemo is to clean out the bone marrow and lymphatic system. It creates a blank canvas for the new stem cells. In the event that there are any bad actors left, the new immune system should recognize those leukemic cells and quietly take them out as they reemerge from dormancy.

Excellent news on the donor too! Love it when a plan comes together! Now’s the challenge for everyone to stay healthy and keep the anxiety level down, huh? LOL I know!! Easier said than done. The thing that cracked me up the most was all of this drama leading to transplant and it basically takes about 20 minutes for the actual event of transfusing the stem cells! Pretty anti-climactic. But what a gift of a second chance at life! We get new birth certificates! 😉 And yes, tell your husband he will get to celebrate 2 birthdays every year now!

I hope you two are able to get away for a little break somewhere to just veg out and try not to think of anything medical for a while. This does become all consuming with so much focus centered on your husband’s condition. This gets better I promise and then life resumes again for both of you. It all can feel overwhelming with the responsibilities of most everything falling on your shoulders, Mary. So just choose your priorities and if some inconsequential things fall through the cracks, let them go and rest when you can.

Right now it’s so gorgeous with all the spring blooms. I hope you’re both able to relax and enjoy the healing benefits of Mother Nature. Sending a hug!

Hi Lori!
Thanks for checking in. Well, we had a great visit at MD Anderson. They recommend we stay in Chicago for the transplant which I am very relieved with.
They also agreed with the treatment path this far with a little difference of opinion about treatment between now and transplant. The transplant doc down there strongly encourages continuing chemo until just before transplant. We reported this to our team at NW and they are going to consider this and let us know their thoughts. He is currently due to end cycle 3 on May 5. The projected admission date is June 5. So there is a month in between which is good for allowing his counts to rise but the concern would be whether the cancer has time to rebound. He will have another biopsy May 14 so we’ll know more about how complete his remission is at that point. His last biopsy showed great improvement with minimum residual disease except for a small percentage of one of the mutations.

We received great news today that his donor and his medical center have agreed to the end of May stem cell collection! The only hurdle left is the clearance portion of the donor’s testing. We’ll know more about that on May 22. Plus we are working extra hard to keep my husband healthy and safe with his low immunity. His energy is good and we are happy to have a clearer path. The doc at MD Anderson gave us hope as well, which is everything.
I’m feeling exhausted from all of this and am working on building up my strength for the long haul. We are hoping we can take a little time away together before he is admitted.

Hope you are doing well, enjoying the beautiful blooms all around us and looking forward to summer.

I’ll keep you posted as things progress.

Thank you,
Mary

Hi Mary, just checking in with you to see how things are rolling along for your husband’s pending transplant. I know you were in the process of getting second opinions. Any decisions?

Thank you for kind wishes and advice. I appreciate you sharing your perspective and experience.

Yes, the indecision about finding the best fit with the hematologist and the cancer center for most optimal transplant experience and medical outcomes adds another layer of uncertainty and stress.
The social worker and other professionals advise to find the care he is most comfortable with and avoid the regret down the line of “I wonder what it would have been like if we had checked out a different option.” We will hopefully make the appointment today to visit MD Anderson sometime in the next couple weeks.
Little setback last night though….my husband developed a blood clot in the arm he has his PICC line. This happened with the first PICC line he had put in a couple months ago. He started a blood thinner last night. Hope that helps and he won’t need to have this one removed and replaced.

Thanks again for your kind words.

Take care,
Mary

@mary612 Mary, I really feel for you and your husband and all of these difficult decisions!! I’m glad there are some positive signs for you to hold onto, amidst all the uncertainty and anxiety.
That doctor would be a tough one for me: There are great advantages to an expert, and bedside manner is not important if they get the job done… But for me, good communication, hearing and respecting my ideas and questions, and keeping me in the loop as part of the treatment team is essential for my healing as a patient.
So if you factor out the bedside manner, are you feeling communicated with and listened to?
And if you are nervous about being in a strange city without support, have you considered temporarily moving someplace with a good amyloidosis center that is close to one of your kids or good family friends?
Sending you and your husband support and healing energy! Sherry

Thank you for kind wishes and advice. I appreciate you sharing your perspective and experience.

Yes, the indecision about finding the best fit with the hematologist and the cancer center for most optimal transplant experience and medical outcomes adds another layer of uncertainty and stress.
The social worker and other professionals advise to find the care he is most comfortable with and avoid the regret down the line of “I wonder what it would have been like if we had checked out a different option.” We will hopefully make the appointment today to visit MD Anderson sometime in the next couple weeks.
Little setback last night though….my husband developed a blood clot in the arm he has his PICC line. This happened with the first PICC line he had put in a couple months ago. He started a blood thinner last night. Hope that helps and he won’t need to have this one removed and replaced.

Thanks again for your kind words.

Take care,
Mary

You have some difficult decisions to make. I had my chemo and transplant in Indianapolis and lived in southern Michigan, so it took good 3,5 hours to get to the hospital. My husband was my caregiver and made that drive to Indy numerous times. It was still doable, since we could schedule an early appointment, get everything done by noon and be back home by the end of the day.

Bedside manners are very important, since you feel like the doctor doesn’t care about you or doesn’t have your best interests in mind if they don’t have that skill. I recommend talking to a social worker on your team about your concerns. They may be able to give you good advice about how to navigate your experience with this doctor.

I had an excellent transplant doctor at IU Health. His name was Dr. Farag. It made such a difference and helped reduce stress for me. I was also hospitalized at a local hospital and had a very negative experience with a hospitalist there. I couldn’t wait to get discharged and never see him again.

Wishing you all the best!

Good morning Lori,
Yes it’s been a whirlwind couple of days! My emotions are all over the place.
You make a great point about our doctor not needing to be our friend. However I am also a bit frustrated by the communication with our primary hematologist. She is busy, has a huge practice, and isn’t warm and fuzzy to begin with. But we know she is a leading expert. So there’s that.

We are going to pursue a visit to MD Anderson. But thinking about all of that, being away from home by myself as a caregiver in a new city really makes me anxious. And thoughts about the aftercare post transplant is really starting to creep in and make me anxious. And then there’s the fact that we were advised at RUSH that there could be a change in direction in his treatment (clinical trial?) if they don’t clean up the cytogenetics in his blood.
So, although I’m trusting, or at least trying to trust and keep the faith, this will all be revealed to us soon enough I’m really struggling with all the uncertainty.
You see he has mutations and chromosome changes that are very difficult to treat and relapse is a real possibility after transplant. Thanks again for holding positive thoughts and encouraging me. Shared your email yesterday with my husband and he was very encouraged and impressed. Your kindness and commitment to all of us, complete strangers, is such a blessing.
Mary

Good morning Lori,
Yes it’s been a whirlwind couple of days! My emotions are all over the place.
You make a great point about our doctor not needing to be our friend. However I am also a bit frustrated by the communication with our primary hematologist. She is busy, has a huge practice, and isn’t warm and fuzzy to begin with. But we know she is a leading expert. So there’s that.

We are going to pursue a visit to MD Anderson. But thinking about all of that, being away from home by myself as a caregiver in a new city really makes me anxious. And thoughts about the aftercare post transplant is really starting to creep in and make me anxious. And then there’s the fact that we were advised at RUSH that there could be a change in direction in his treatment (clinical trial?) if they don’t clean up the cytogenetics in his blood.
So, although I’m trusting, or at least trying to trust and keep the faith, this will all be revealed to us soon enough I’m really struggling with all the uncertainty.
You see he has mutations and chromosome changes that are very difficult to treat and relapse is a real possibility after transplant. Thanks again for holding positive thoughts and encouraging me. Shared your email yesterday with my husband and he was very encouraged and impressed. Your kindness and commitment to all of us, complete strangers, is such a blessing.
Mary