Well I have started my maintenance program of remission and so far all has gone well. My new medication has proved to be very successful and in meeting with my doctor, all my critical numbers are above the safe range, which makes her happy and me ecstatic. Everyone continues to be amazed at the tremendous progress I have made and many call me the miracle child, but I will hold my glee for several years. I did have one unfortunate blip when I again broke out in hives last Tuesday after my first treatment back after two week off all drugs, so I am off to the allergist tomorrow (monday). Could be something I ate or a reaction to one of the monthly drugs - I get (Zometa) which helps build strong bones monthly, so it could be that. I have had three times now, but who knows. This body of mine is quite sensitive to anything foreign that goes into it... a word to the wise for all you "Bosh" decedents. I remember my mother having reactions to drugs too. The other news is that I have a growth on my thyroid that the doctor has been tracking for almost 3 years and I know it is time to be sure it is fine, so I am having a CAT scan and biopsy done in the next few weeks. It hasn't grown in 3 years, so they assure me that it is probably nothing serious. Can't take another scare for sure.
So for those of you who watch TV and have Showtime (I actually don't), I have rented the "Big C" with Laura Linney. They filmed it in a friend's house a few blocks from us in Shippan Point, so seeing the location was quite fun. But it is about a mother who is diagnosed with melanoma (that is the skin cancer) and her journey of not only realizing the disease, but sharing it with others and finally submitting to treatment. Interesting show if you like a drama/comedy. Season 2 begins next week, so you can rent season one from netflix or iTunes.
Well that's the latest. My maintenance is now 4 weeks on and 2 weeks off, which is very easy. but the good news is that since I am in remission, I can get a trainer for 6 months and a free membership to the exercise facility at the hospitals health center! YEAH! Finally I can get back into shape and tone those long overdue need for exercise muscles. And they have a pool so back to swimming again.
Thanks again for reading this, love having someone who cares to know what is going on!!
xoxo
Sunday, July 31, 2011
Friday, July 8, 2011
July 7, 2011
Latest Update:
So they have officially put me on "maintenance" drugs and declared it remission. I really hate to say the word for fear it will change, but hey, they are using it! They have changed my meds quite a bit, so I am a little apprehensive that it won't continue to be an easy road. to begin... they added one more medication: cytoxan, so I did my usual research and yikes... one of its side effects is you lose your hair. So in total anxiety, fear, and worry, I called the doctor and said no way am I doing this. I have come this far without it happening and it just won't work for me. She assured me that the dosage was so low that it wouldn't happen. Well the warnings say 3-6 weeks and I am approaching week #3. She also said that if my hair does start thinning they will readjust the medication. Phew!! (But I did check out wigs and the one I want is $1100.) wonder if Medicare will cover that??? So I am now weaning off of the Prednisone from the awful May I had. It takes 8 weeks to withdraw from the drug with little increments every 10 days....Oh the fun of medications. NOW with the cytoxan, they feel I don't need the methotrexate, which is what caused the problems of May (taking me off the methotrexate). So am I nervous...you bet. I am slowly reaching the limit of trusting everyone to know what medications I take. Therefore, I bring the list and check on which one is for what and dosage and days- to be sure I am taking it then correctly. But luckily I am down to only three medications, of which one is only once a week.
So things are great. I feel good, not great, energy is still a challenge, but all the numbers keep going up, which everyone finds amazing. Even me! The neuropathy in my left hand fingers is still there, so I am careful not to pick up anything hot with it. But it is a nuisance. so I read and read about what helps it. B12, acupuncture, massage - there is a remedy out there for everything.
So that is the latest. Thanks to all of you who read this and follow it! love you all....
So they have officially put me on "maintenance" drugs and declared it remission. I really hate to say the word for fear it will change, but hey, they are using it! They have changed my meds quite a bit, so I am a little apprehensive that it won't continue to be an easy road. to begin... they added one more medication: cytoxan, so I did my usual research and yikes... one of its side effects is you lose your hair. So in total anxiety, fear, and worry, I called the doctor and said no way am I doing this. I have come this far without it happening and it just won't work for me. She assured me that the dosage was so low that it wouldn't happen. Well the warnings say 3-6 weeks and I am approaching week #3. She also said that if my hair does start thinning they will readjust the medication. Phew!! (But I did check out wigs and the one I want is $1100.) wonder if Medicare will cover that??? So I am now weaning off of the Prednisone from the awful May I had. It takes 8 weeks to withdraw from the drug with little increments every 10 days....Oh the fun of medications. NOW with the cytoxan, they feel I don't need the methotrexate, which is what caused the problems of May (taking me off the methotrexate). So am I nervous...you bet. I am slowly reaching the limit of trusting everyone to know what medications I take. Therefore, I bring the list and check on which one is for what and dosage and days- to be sure I am taking it then correctly. But luckily I am down to only three medications, of which one is only once a week.
So things are great. I feel good, not great, energy is still a challenge, but all the numbers keep going up, which everyone finds amazing. Even me! The neuropathy in my left hand fingers is still there, so I am careful not to pick up anything hot with it. But it is a nuisance. so I read and read about what helps it. B12, acupuncture, massage - there is a remedy out there for everything.
So that is the latest. Thanks to all of you who read this and follow it! love you all....
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