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!!
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