Day 123 Maintenance Chemo Started - Tacrolimus Stops

On my last post I failed to mention that Dr. Champlin started me on a maintenance chemo treatment.
The same drug, Vidaza, I received during the 5 months of "gentle chemo" before I was ready to go to stem cell transplant. My dosage is not as strong now and I receive it through an injection into my stomach. The treatments last for 5 straight days and only happen once per month. This is projected to take place for about a year. The doctor explained that not only will this potentially increase my odds of not having a recurrence of the MDS, but also could help the odds of not developing GVHD (graft versus host disease)...at least some research has indicated this potential benefit.

So I had my treatments the first week of August. I am due to start another set of injections on September 2nd. My primary side effects during that week were the constipation I get secondary to the anti-nausea medicine and some lingering nausea. My stomach has not cleared up all together anyway and the digestive issues, nausea persist. It seems to come in waves with not much predictability.

The doctor discontinued my tacrolimus (the anti-rejection medication) yesterday after a tapering back period. He is still pleased with my blood counts and I'm hoping we will be able to have my central line removed soon. I start physical therapy tomorrow for a pretty sever pain that will not go away in my right shoulder. I first started having it during my hospitalization, but it went away shortly before being discharged. It returned again around a month later and hasn't gone away.

So all else is well. Thanks for the continued support and prayers. I'm getting back to my normal routines and finding it hard to stay within my restrictions placed because of my suppressed immune system:
1. No hugging- except for my immediate family.
2. Lots of careful hand washing and sanitizer.
3. Wear a mask in crowds if you are less than two arms lengths from the person next to you.
4. Hand shaking is ok as long as you sanitize your hands afterwards.
5. No working around dirt or lots of dust --- which means no gardening for now...no renovating our  cabin which I had hoped to get back to finishing what I had started before my diagnosis.
6. Traveling out of the city is OK. Airplane travel should be limited to places with a major hospital and always wear a face mask during the flight.
7. Avoid any visitors with any infections or even a runny nose.
8. Foods restrictions continue, but are not nearly as restrictive as before.
9. Sunscreen and protective clothing (hats and long sleeve shirt) when out in the sun for more than a few minutes.

So my return to work as a speech and language pathologist is still not advisable. I'm debating about whether I will go back at all right now. My newly acquired golfing interest is still on hold during this summer heat....I can't imagine wearing long sleeves and a wide brimmed hat and even a game of 9 holes is probably longer than my doctors would advise. Not sure when I will be able to pursue that again....I miss my lady golfing friends at Jersey Meadows :(
I still am unable to be an Extraordinary Minister of Holy Communion at my church. The cleaning and consuming the communal cup of wine and the close proximity with people just isn't advisable yet.
I'm learning a lot of patience and doing a lot of in home projects which never fit into my busy schedule before....so I guess that's what it takes to get an "on the go woman" to slow down!!

A Fun Time with Old Friends

I am purposely not reporting on any thing about my illness. This weekend was about getting away from my Cancer struggles and taking time to have fun and laugh with old friends. I am so thankful that I am feeling up to these visits now! Four of my old speech buddies from Austin were able to come to Houston for an overnight visit at my house. We all worked together at what used to be called Healthcare Rehab Center in Austin. It now goes by the name of "Texas Neuro Rehab" It was an unusual place in that we had some very difficult patients (many with traumatic brain injury and some were adolescence with severe emotional and psychological issues) to work with,,,,many were patients that were sent to our facility because no other facility in their state could handle them. These patients call this facility home for an extended period of time.
This group of about 10 speech and language pathologist have stayed connected for some 25 plus years. Most of us didn't have children at the time we started working together and now many of our kids are out of college and leaving home! Two of our group have passed away. But there has always been a bond between us that was unexplainable. We just connected, and have stayed connected although many of us have been separated by distance and work environments for numerous years. Here are four of my good friends from Austin and the surrounding area: From left to right:
Cydney, Diana Kim and Barbara. I enjoyed the weekend guys...till our next "girls weekend"!

Love, Gail

Day 107 - Bone Marrow Biopsy Results

On Tuesday I met with the Infectious Disease Doctor, Doctor Chemaly. He reviewed the results of my CT scan of the chest that I had done on Monday. And though the spots on my left lung showed improvement, the spot on my right lung looks about the same or possibly a little worse.  Dr. Chemaly said this infection, called MAI, is something many people are exposed to. It just takes someone like me with a suppressed immune system a long time to get rid of. He said it could take up to a year or two. So I am staying on the antibiotics for now.

Thursday I met with Dr. Champlin. He was very pleased with the results of the bone marrow biopsy as well as my blood counts. He is tapering down the tacrolimus (anti-rejection medication) to one time a day. When I asked the intern if the biopsy indicated that I was in remission, he said "Yes".
I realize though that the fact that you're

 

in remission does not mean I am out of danger for the disease returning, it only means that there is no sign of disease at this time. Praise God!

This week I enjoyed a visit from my old college roommate (May) and her husband (David). We lived together my senior year along with my good friend Becky. May moved to the Toronto area and it's been about 30 years since we have seen each other. So I made sure they got their fill of my Texas twang and had some good Tex-Mex food at Lupe Tortilla's.