A Day in the Life

28 Day Testing on Wednesday

Visit with Dr. Ustun

Nice Lungs

Incredible Shrinking Lymph Nodes

A Little Shaky

This Caregiver Needs Practice

It's not the first time I have poached a post title. Actually, regular readers readily recognize that I rarely have an original thought.  JoAnne's 28 Day tests are scheduled for Wednesday and not tomorrow as previously noted. A PET scan, a bone marrow biopsy and IVIG are a heavy load for one day, but her doctor said she could do the PET without contrast. She has a history of nausea problems with that glop so she was anxious about starting off a long day on the wrong foot. She is much relieved.

The primary doctor came by today while JoJo was doing IVIG. Dr. Celalettin Ustun has a gentle smile and manner that is very comforting. We haven't seen him since before entering the hospital due to the rotation schedule that is employed by the BMT program. However, the entire team meets regularly to discuss each patient so he has been completely in the loop on JoAnne's progress. She will now see him again on a regular basis. I might also add that JoJo ventured out for her appointments today without her walker. She is gaining confidence! 

Throughout her care, I have noticed that one of the first questions out of each physician or physician assistant has had to do with her lungs and cough. It was clear that they were all on guard. When listening to the lungs, they often seemed surprised when the breath sounds were clear. Dr. Ustun came in today, and he was taken aback by her condition in a good way. He used words like "amazing". It takes a while to figure it out, but it seems apparent there was much trepidation about starting JoAnne on the transplant, because of the pulmonary issues she has dealt with in the past. Everybody seems much relieved that she has progressed to this point. ID of the CMV in her lungs is a bigger deal than we may have previously understood. It is hard to suppress, but Dr. Ustun feels like we may now have the upper hand.

Prior to transplant, JoAnne had considerably enlarged lymph nodes in her neck and armpits that were easily felt. Those have diminished significantly due to the chemo and radiation she received in preparation for the transplant. Encouraging news. The PET scan will provide a more accurate assessment of the current cancer burden and how active it is. It will also show the level of donor vs host cells. As Dr. Ustun explained, there is no expectation at this point, that all of the cancer cells will be gone, although we'd take it. The same can be send for the percentage of cells that are from the donor. The goal is for the donor cells from her brother Bill to propagate and replace all of JoAnne's cells, regardless of whether they were normal or cancerous. It will take many months. If my notes are accurate, we will discuss the results of Wednesday's tests early next week.

Besides fatigue, JoAnne is experiencing some freaky hand tremors. The dose of her cyclosporine for anti-rejection is still too high based on tests this morning. They don't seem worried about it, but please fix it! That drug is not kidney friendly so the sooner corrected the better. JoAnne can help by consuming large quantities of fluids; about 2 liters a day. For the next few days, she can be found in close proximity to the bathroom.

I take a certain level of pride in my ability as a caregiver. One of my responsibilities is to change the dressing on the catheter that protrudes from JoAnne's chest. Because we were regularly visiting the clinic, they were taking care of it until this weekend. My first chance! I set up the sight, got organized and removed the old dressing. With gloves on, I wasn't rattled that the gauze dressing was different than she had previously received. It was large, and I didn't want to cut it in the interests of sterility. Once taped on, it seemed porous. There was a 3 x 4" adhesive transparent dressing in the kit so I stuck that on top. By the time I was done, JoJo looked like she'd taken a bullet in the shoulder and been treated in the field of battle. No blood, just a large, shlocky looking dressing that started to fall off in the middle of the first night. On top of it all, I found the correct dressing I should have used when I was packing up. We went in today, and the nurse did a double take when she saw my artwork. She was kind, but almost had to call in reinforcements to get it completely removed. I will do better next time.

No appointments for Tuesday. We will just hang at home. In the coming days, some of the antibiotics and anti-rejection drugs will be reduced or discontinued. The challenge is to manage them in a balance against the growth of the new immune system so that infection and rejection is kept to a minimum. So far, these folks seem to know what they are doing! We are certain that your prayers and the grace of God follow us wherever we go. Keep the faith!

Cancer Sucks