Hangin' with the Dolly Lama

Simple pleasures. After a rocky road last week, it is nice to sit and relax this afternoon with JoJo and Pastor John, basking in the warmth of good news. Our girl has taken giant steps from her lows last week, and is focused on doing all she can to insure a quick dispatch from Unit 4B. She added stairs to the Occupational Therapy regimen today. The doctors are impressed and have begun weaning her off IV meds and switching to oral, which is one requirement for going home. She has a bit of blood with her cough that they are keeping an eye on, but there are many irritants she has had to deal with so we will hope for a quick resolution. Neither of us were quite prepared when the doctor hinted this morning that home may come sooner than originally anticipated.

This is making me look bad. I have been trying to convey how difficult and dangerous transplants can be. Here we are at Day 14, 21 days after admission, and there is the chance that JoJo could get home in the coming week. It is hard to believe she has come this far from last weekend. And yet, in talking with the doctors, they still comment on how "exciting" that event was. There are still hurdles to overcome both short and long term, but we see reasons for considerable optimism. I talked with Bill, JoAnne's brother and donor, and he is recovering slow but sure. Giving up 4.5 million stem cells tends to take it out of a guy! 

The infections have been identified and are under control. She has a pseudomonas and a CMV and they are treating them appropriately. In the most basic terms, CMV is the chicken pox and shingles virus. Lying dormant in a large segment of our population, it is usually not a problem. When the immune system is compromised, CMV can blossom and wreak havoc. It can't be eradicated, but it can be suppressed. That is the current game plan. Keep a foot on its neck and give JoJo's immune system time to rebuild and keep it in check.

Her blood chemistry is responding in strong fashion. At present, much of that is from JoAnne's remaining stem cells that are responding to growth factors she is receiving. As these cells die a natural and normal death, the expectation is that Donor Bill's stem cells will step in and replace them. It is a gradual process. In the coming days and weeks, there will be a DNA test to measure the prevalence of new cells. There will also be daily clinic visits for many weeks and a few more bone marrow biopsies. It is also not unusual for transplant patients to experience additional neutropenic fevers that require  hospitalization. There are a host of other maladies that can befall JoJo, but for now, let's revel in the blessing that is her current status.

It is not my intention to rain on the parade. With today's news, I learned that it is just as easy to get overly excited about good news as it is to get frustrated with bad. We are trying to enforce a policy of never too high, never too low, so bear with us as we try and talk ourselves down to earth.

As an example of how far we have come, we need look no further than the ANC or absolute neutrophil count. Followers of the blog may recall that I refer to this as the Nookie Number. When JoJo was going through treatments last fall, we were told that if the number fell below 1.5, all forms of intimacy were put on hold. It sometimes feels like the ANC has been below 1 for a year, but JoAnne tells me I am wildly exaggerating. After chemo and radiation, the ANC was down to .10. Aaaarrrggghhhh! The doctors were in yesterday bragging about her numbers, and I quite naturally inquired about the ANC. It is up to 3.8! I could not restrain my glee! "Alright honey! We can have sex again!" The doctor, the female doctor and JoAnne, all turned to me with what I can only describe as horrified expressions. Some people can't take a joke.

Over the past 12 years, JoAnne has endured 4 bouts with chemotherapy. In all cases, she has managed to avoid hair loss. Round 5 brought that streak to an end. While it is true that hair grows back, the emotional and identity issues connected with chemo related hair loss, particularly for women, cannot be easily dismissed. It had been weighing heavily on her and by Day 9, she was finding hair on her pillow. JoJo took matters into her own hands and had a nurse do the deed. 

 

When I came to Room 222, she was sitting in the recliner by her room window. With her bald head and tortoise shell rimmed glasses, my first reaction was.............Dalai Lama, although her hospital "robes" weren't nearly as regal. To her credit, she has adjusted quickly and well. After a long search, JoJo came upon Beau Beaus, stylish silk scarves that will temper some of the uneasiness about her lack of hair.

http://www.4women.com/fabrics/silk

She even sounds excited about it and has begun to grasp the freedom that comes with not having to worry about hair, color, styles, maintenance, etc. You have to find those rays of sunshine wherever you can these days. She is getting Black & Bloom, Amazing Grace and Bohemian Vintage to get started.

We continue to thank each and every one of you for your support and prayers. It is abundantly clear that if there are no atheists in foxholes, you won't find many in bone marrow transplant units either. JoJo keeps putting one foot in front of the other and displaying an inspiring level of courage. Keep the faith!

Cancer Sucks