I have my doctors appointment next week, I am nervous to see what my platelet count will be. I have felt okay, minus the pins and needles sensations, that I'm still experiencing from time to time.
Most days, I feel okay, some fatigue but that could be the kids not necessarily my Essential Thrombocythemia. Sometimes, I actually forget that I will have this disease for the rest of my life and that there is no cure.
I hope that I will get to have many years symptom free but I am still scared for the future.
One day at a time, one day at a time.
I hope everyone is doing well -
Shayna
March 28, 2011
March 16, 2011
PURIM
Purim is coming up and this is one of our family's favorite holidays!
This year, the girls are dressing up in kimonos and my son is dressing up in a silk outfit, with dragons on it. The costumes were purchased by my in-laws who took a trip to China last year. The costumes are very beautiful and the kids are excited to wear them.
When I was telling the kids about the costumes, I stressed the fact that they were actually made in China. My husband stepped in and said "Hon, we can find lots of things that were made in China, right here in the US!" =) I guess I should have stressed the fact that they were bought in China.
Below is a post from last year that explains the holiday.
I hope everyone is doing well -
Shayna
Our Beautiful and Messy Life: A Purim Celebration: "For those who are not sure what Purim is, here is a little about it: Purim (Hebrew: פורים) is a festival that commemorates the deliv..."
This year, the girls are dressing up in kimonos and my son is dressing up in a silk outfit, with dragons on it. The costumes were purchased by my in-laws who took a trip to China last year. The costumes are very beautiful and the kids are excited to wear them.
When I was telling the kids about the costumes, I stressed the fact that they were actually made in China. My husband stepped in and said "Hon, we can find lots of things that were made in China, right here in the US!" =) I guess I should have stressed the fact that they were bought in China.
Below is a post from last year that explains the holiday.
I hope everyone is doing well -
Shayna
Our Beautiful and Messy Life: A Purim Celebration: "For those who are not sure what Purim is, here is a little about it: Purim (Hebrew: פורים) is a festival that commemorates the deliv..."
March 10, 2011
Paresthesia / Pins and Needles and Essential Thrombocythemia / ET Update
I went to the neurologist last week to talk to him about my Paresthesia (Pins and Needles sensation). He said my CAT scans were negative and that my MRI showed some very minor TIA but nothing to worry about. He thinks the Paresthesia is a direct result of my platelet levels being so high. Now that my numbers are coming down with the Hydroxyurea (HU), he thinks that the Paresthesia will calm down.
He did say that if he continues and is very bothersome, they can run a more specific MRI with contrast called an MRA. The doctor and I agree, we are going to take a watch and see approach.
My hematologist and I also met last week and because my numbers look so good now - they're 500,000 - we are going to reduce my HU to 1500mg per day! Also, instead of every two weeks, now I can go every month. I am so HAPPY! Not only do I not have to get poked with a needle, I don't have to sit in a waiting room with my two year old! Trying to entertain him at these appointments is so exhausting! Once the nurse stuck me with the needle and he bumped into my arm, lets just say it was not pretty!
I asked the doctor the question I am sure all ET patients ask, "Since my numbers are coming down and everything is looking better, does this mean that the Essential Thrombocythemia is going away forever?" I knew the answer but I still had to ask. He told me the following, "It never goes away, this form of Cancer has no known cure. Science is working very hard but for now, you will have it for the rest of your life. Hopefully we can continue to manage it with the meds and I may even be able to give you a drug vacation from time to time but eventually your platelet count will go back up again. I am sorry, lets just take it day by day or now, month by month."
The doctor is right, of course I need to remember to celebrate the small successes but I still can't help but think about what lies ahead. In the beginning of my journey, I wanted to see my kids grow up. Now that I know I can control this Cancer, I want to be able to control it long enough to see my grandchildren grow up. I just hope the meds don't have lasting consequences. I am sure it can't be good to be on HU (chemotherapy) for 20 plus years.
I need to keep reminding myself, small successes, small successes!
I hope everyone is doing well -
Shayna
He did say that if he continues and is very bothersome, they can run a more specific MRI with contrast called an MRA. The doctor and I agree, we are going to take a watch and see approach.
My hematologist and I also met last week and because my numbers look so good now - they're 500,000 - we are going to reduce my HU to 1500mg per day! Also, instead of every two weeks, now I can go every month. I am so HAPPY! Not only do I not have to get poked with a needle, I don't have to sit in a waiting room with my two year old! Trying to entertain him at these appointments is so exhausting! Once the nurse stuck me with the needle and he bumped into my arm, lets just say it was not pretty!
I asked the doctor the question I am sure all ET patients ask, "Since my numbers are coming down and everything is looking better, does this mean that the Essential Thrombocythemia is going away forever?" I knew the answer but I still had to ask. He told me the following, "It never goes away, this form of Cancer has no known cure. Science is working very hard but for now, you will have it for the rest of your life. Hopefully we can continue to manage it with the meds and I may even be able to give you a drug vacation from time to time but eventually your platelet count will go back up again. I am sorry, lets just take it day by day or now, month by month."
The doctor is right, of course I need to remember to celebrate the small successes but I still can't help but think about what lies ahead. In the beginning of my journey, I wanted to see my kids grow up. Now that I know I can control this Cancer, I want to be able to control it long enough to see my grandchildren grow up. I just hope the meds don't have lasting consequences. I am sure it can't be good to be on HU (chemotherapy) for 20 plus years.
I need to keep reminding myself, small successes, small successes!
I hope everyone is doing well -
Shayna