Monday +33 (9:30 PM)

Today was kind of a tough day for Jackie. Her energy level is lower and her nausea was bad most of the day. She has also been depressed about missing Mother's Day and the kids. Talking to them on the phone just isn't the same as seeing them.

Her energy level is low due to decreases in her RBC (Hgl) counts. For reasons unknown her counts continue to decline. Her RBC count was down to 9.5 from 9.6. Her WBC count has declined to 1.20 from 3.2. Her platelets have declined to 85 from 99. These are counts from Saturday. I will have Monday's counts tomorrow. Jackie also received another chest X-ray today. It was routine and we don't expect any surprises.

A lot of things can cause the decline. They have discontinued a couple of the pills she is taking. This may help but only time will tell. The counts can also be altered due to the suppression regimen. These will need to be kept at their current levels for the time being. The suppression also is the likely cause of her shakiness. This seems to be a bit better, however. For whatever reason she has resumed losing some hair. It has thinned even more over the last several days. It has been highly unusual for her to retain her hair and it would be highly unusual for her to lose it at this point. But, as they continue to remind us each patient is different.

She is not to the point of requiring the wheelchair again, but she isn't too far away. Today we went to the grocery store and she was only able to make it down a few of the isles before returning to the car. Part of the problem is the energy level and part of the problem is nausea. Beginning tomorrow we are going to start using some of the stronger nausea meds on a regular basis. We've tried to move away from them because they tend to make her sleepy. I think at this point we have no choice but to continue them for awhile.

I continue to think the nausea is partially caused by a small amount of GvHD in the stomach. The major cause is likely to be due to the continued lack normal taste buds. Things just don't taste right. For example, I bought (and sterilized) two different types of fresh grapes. She couldn't even take one bite because they were too sweet. One of the types of grapes was not ripe. They were actually sour and I couldn't eat them for that reason. For her the sensation was sweet. Really sweet. So until this resolves the nausea will likely continue.

She is still doing much better than many patients at the same stage. We had hoped to graduate to clinic visits today. Perhaps it would have happened, but the doctors rotated shifts today.

There are two things we don't like about the Mayo Clinic. Anyone reading my posts knows my biggest gripe has been the lack of quality food. The other gripe is that doctors are rotated through the various hospital departments on a two week basis. The idea is that all doctors have to get frequent hands-on experience in a hospital environment. From what I can tell each doctor ends up doing a 2 week shift about once per year. This probably works great and is a good idea for most departments. However, for long term care patients (like transplant) it leads to a sense of discontinuity. On Saturday the doctor (who was fantastic by the way) told us to count on graduating to clinic visits probably on Monday. On Monday (today) we had to re-educate a brand new doctor (a lady). In two weeks she will be very familiar with us, our problems, and our needs. Just as she really gets to know us she will rotate out? I think the Mayo Clinic needs to rethink their policy with regard to the transplant portion of the hospital. I've talked with other patients and my gripes are universal. Maybe they will read my blog and something will change:)

Upon return from the grocery store our electronic room key failed to open the door. This signaled another 30 day period had ended here in Rochester. For what it is worth, it seems like only yesterday that our key failed to work and signaled the end of the first 30 day period here. You wouldn't think time would pass so quickly in such a tiny apartment!

If we compare the first 30 day period to the second 30 day period things are definitely better. I think the 3rd 30 day period will see a big improvement in Jackie's condition.

Until Later,

Bruce and Jackie
From Rochester, MN